Jump to content

Tom Galli

Moderators
  • Posts

    4,138
  • Joined

  • Last visited

  • Days Won

    549

Reputation Activity

  1. Like
    Tom Galli got a reaction from Marilyn Raven for a blog entry, A New Chapter   
    Perhaps you've noticed. My activity on this treasured Forum has declined. Folks have inquired. I've been hesitant to respond; perhaps my faith and hope that things might be different caused a lack of candor. I'm nearing 20 years of surviving Stage IIIB diagnosed, Stage IV progressed squamous cell non-small cell lung cancer. Longevity after diagnosis in my day is a miracle. Thankfully it is much more commonplace today.
    No, I don't have a lung cancer recurrence. I'm cancer-free as far as I know. My annual oncology consult with low-dose CT is in September but I'm not concerned. My daily trial is pain. I've had chronic pain from taxol (burning toes sometimes called taxol toes) and a constant throbbing at my open thoracotomy incision site. Eighteen taxol infusions have left their mark; three open thoracotomies in the span of 7 months are the painful surgical side effects. Now nearing 73 years of life, 2 Army injuries have joined my parade: herniated disks in my neck and lower back. Moreover, muscle cramping, another taxol-induced problem causing low magnesium in my bloodstream, is worsening. I'm not sleeping, at least not having restful sleep. And yes, my physicians have tried every sleep remedy. My GP is still trying.
    In a recent consult with my GP, he advised that I not seek surgical care for my herniated disks. He is concerned about my pulmonary insufficiency, and I'm waiting for my pulmonologist's view. Of course, the orthopedic surgeon counsels little risk. But surgeons are surgeons. My neck and back may be correctable, but I might not survive the surgery. My GP also wants me to ask the pulmonologist about O2, 24/7. I'm currently using O2 at night (attempting to sleep), but 24/7 tethered to a leash would be a new chapter in my life. 
    I check the Forum every day and thankfully we have a team of folks who welcome and provide meaningful suggestions and support. I'll be in the wings cheering all on from the sideline. As always...
    Stay the course.
    Tom
     
  2. Sad
    Tom Galli got a reaction from Izzy for a blog entry, A New Chapter   
    Perhaps you've noticed. My activity on this treasured Forum has declined. Folks have inquired. I've been hesitant to respond; perhaps my faith and hope that things might be different caused a lack of candor. I'm nearing 20 years of surviving Stage IIIB diagnosed, Stage IV progressed squamous cell non-small cell lung cancer. Longevity after diagnosis in my day is a miracle. Thankfully it is much more commonplace today.
    No, I don't have a lung cancer recurrence. I'm cancer-free as far as I know. My annual oncology consult with low-dose CT is in September but I'm not concerned. My daily trial is pain. I've had chronic pain from taxol (burning toes sometimes called taxol toes) and a constant throbbing at my open thoracotomy incision site. Eighteen taxol infusions have left their mark; three open thoracotomies in the span of 7 months are the painful surgical side effects. Now nearing 73 years of life, 2 Army injuries have joined my parade: herniated disks in my neck and lower back. Moreover, muscle cramping, another taxol-induced problem causing low magnesium in my bloodstream, is worsening. I'm not sleeping, at least not having restful sleep. And yes, my physicians have tried every sleep remedy. My GP is still trying.
    In a recent consult with my GP, he advised that I not seek surgical care for my herniated disks. He is concerned about my pulmonary insufficiency, and I'm waiting for my pulmonologist's view. Of course, the orthopedic surgeon counsels little risk. But surgeons are surgeons. My neck and back may be correctable, but I might not survive the surgery. My GP also wants me to ask the pulmonologist about O2, 24/7. I'm currently using O2 at night (attempting to sleep), but 24/7 tethered to a leash would be a new chapter in my life. 
    I check the Forum every day and thankfully we have a team of folks who welcome and provide meaningful suggestions and support. I'll be in the wings cheering all on from the sideline. As always...
    Stay the course.
    Tom
     
  3. Sad
    Tom Galli got a reaction from ChiMama for a blog entry, A New Chapter   
    Perhaps you've noticed. My activity on this treasured Forum has declined. Folks have inquired. I've been hesitant to respond; perhaps my faith and hope that things might be different caused a lack of candor. I'm nearing 20 years of surviving Stage IIIB diagnosed, Stage IV progressed squamous cell non-small cell lung cancer. Longevity after diagnosis in my day is a miracle. Thankfully it is much more commonplace today.
    No, I don't have a lung cancer recurrence. I'm cancer-free as far as I know. My annual oncology consult with low-dose CT is in September but I'm not concerned. My daily trial is pain. I've had chronic pain from taxol (burning toes sometimes called taxol toes) and a constant throbbing at my open thoracotomy incision site. Eighteen taxol infusions have left their mark; three open thoracotomies in the span of 7 months are the painful surgical side effects. Now nearing 73 years of life, 2 Army injuries have joined my parade: herniated disks in my neck and lower back. Moreover, muscle cramping, another taxol-induced problem causing low magnesium in my bloodstream, is worsening. I'm not sleeping, at least not having restful sleep. And yes, my physicians have tried every sleep remedy. My GP is still trying.
    In a recent consult with my GP, he advised that I not seek surgical care for my herniated disks. He is concerned about my pulmonary insufficiency, and I'm waiting for my pulmonologist's view. Of course, the orthopedic surgeon counsels little risk. But surgeons are surgeons. My neck and back may be correctable, but I might not survive the surgery. My GP also wants me to ask the pulmonologist about O2, 24/7. I'm currently using O2 at night (attempting to sleep), but 24/7 tethered to a leash would be a new chapter in my life. 
    I check the Forum every day and thankfully we have a team of folks who welcome and provide meaningful suggestions and support. I'll be in the wings cheering all on from the sideline. As always...
    Stay the course.
    Tom
     
  4. Sad
    Tom Galli got a reaction from LovingWife for a blog entry, A New Chapter   
    Perhaps you've noticed. My activity on this treasured Forum has declined. Folks have inquired. I've been hesitant to respond; perhaps my faith and hope that things might be different caused a lack of candor. I'm nearing 20 years of surviving Stage IIIB diagnosed, Stage IV progressed squamous cell non-small cell lung cancer. Longevity after diagnosis in my day is a miracle. Thankfully it is much more commonplace today.
    No, I don't have a lung cancer recurrence. I'm cancer-free as far as I know. My annual oncology consult with low-dose CT is in September but I'm not concerned. My daily trial is pain. I've had chronic pain from taxol (burning toes sometimes called taxol toes) and a constant throbbing at my open thoracotomy incision site. Eighteen taxol infusions have left their mark; three open thoracotomies in the span of 7 months are the painful surgical side effects. Now nearing 73 years of life, 2 Army injuries have joined my parade: herniated disks in my neck and lower back. Moreover, muscle cramping, another taxol-induced problem causing low magnesium in my bloodstream, is worsening. I'm not sleeping, at least not having restful sleep. And yes, my physicians have tried every sleep remedy. My GP is still trying.
    In a recent consult with my GP, he advised that I not seek surgical care for my herniated disks. He is concerned about my pulmonary insufficiency, and I'm waiting for my pulmonologist's view. Of course, the orthopedic surgeon counsels little risk. But surgeons are surgeons. My neck and back may be correctable, but I might not survive the surgery. My GP also wants me to ask the pulmonologist about O2, 24/7. I'm currently using O2 at night (attempting to sleep), but 24/7 tethered to a leash would be a new chapter in my life. 
    I check the Forum every day and thankfully we have a team of folks who welcome and provide meaningful suggestions and support. I'll be in the wings cheering all on from the sideline. As always...
    Stay the course.
    Tom
     
  5. Sad
    Tom Galli got a reaction from NikoleV for a blog entry, A New Chapter   
    Perhaps you've noticed. My activity on this treasured Forum has declined. Folks have inquired. I've been hesitant to respond; perhaps my faith and hope that things might be different caused a lack of candor. I'm nearing 20 years of surviving Stage IIIB diagnosed, Stage IV progressed squamous cell non-small cell lung cancer. Longevity after diagnosis in my day is a miracle. Thankfully it is much more commonplace today.
    No, I don't have a lung cancer recurrence. I'm cancer-free as far as I know. My annual oncology consult with low-dose CT is in September but I'm not concerned. My daily trial is pain. I've had chronic pain from taxol (burning toes sometimes called taxol toes) and a constant throbbing at my open thoracotomy incision site. Eighteen taxol infusions have left their mark; three open thoracotomies in the span of 7 months are the painful surgical side effects. Now nearing 73 years of life, 2 Army injuries have joined my parade: herniated disks in my neck and lower back. Moreover, muscle cramping, another taxol-induced problem causing low magnesium in my bloodstream, is worsening. I'm not sleeping, at least not having restful sleep. And yes, my physicians have tried every sleep remedy. My GP is still trying.
    In a recent consult with my GP, he advised that I not seek surgical care for my herniated disks. He is concerned about my pulmonary insufficiency, and I'm waiting for my pulmonologist's view. Of course, the orthopedic surgeon counsels little risk. But surgeons are surgeons. My neck and back may be correctable, but I might not survive the surgery. My GP also wants me to ask the pulmonologist about O2, 24/7. I'm currently using O2 at night (attempting to sleep), but 24/7 tethered to a leash would be a new chapter in my life. 
    I check the Forum every day and thankfully we have a team of folks who welcome and provide meaningful suggestions and support. I'll be in the wings cheering all on from the sideline. As always...
    Stay the course.
    Tom
     
  6. Sad
    Tom Galli got a reaction from BridgetO for a blog entry, A New Chapter   
    Perhaps you've noticed. My activity on this treasured Forum has declined. Folks have inquired. I've been hesitant to respond; perhaps my faith and hope that things might be different caused a lack of candor. I'm nearing 20 years of surviving Stage IIIB diagnosed, Stage IV progressed squamous cell non-small cell lung cancer. Longevity after diagnosis in my day is a miracle. Thankfully it is much more commonplace today.
    No, I don't have a lung cancer recurrence. I'm cancer-free as far as I know. My annual oncology consult with low-dose CT is in September but I'm not concerned. My daily trial is pain. I've had chronic pain from taxol (burning toes sometimes called taxol toes) and a constant throbbing at my open thoracotomy incision site. Eighteen taxol infusions have left their mark; three open thoracotomies in the span of 7 months are the painful surgical side effects. Now nearing 73 years of life, 2 Army injuries have joined my parade: herniated disks in my neck and lower back. Moreover, muscle cramping, another taxol-induced problem causing low magnesium in my bloodstream, is worsening. I'm not sleeping, at least not having restful sleep. And yes, my physicians have tried every sleep remedy. My GP is still trying.
    In a recent consult with my GP, he advised that I not seek surgical care for my herniated disks. He is concerned about my pulmonary insufficiency, and I'm waiting for my pulmonologist's view. Of course, the orthopedic surgeon counsels little risk. But surgeons are surgeons. My neck and back may be correctable, but I might not survive the surgery. My GP also wants me to ask the pulmonologist about O2, 24/7. I'm currently using O2 at night (attempting to sleep), but 24/7 tethered to a leash would be a new chapter in my life. 
    I check the Forum every day and thankfully we have a team of folks who welcome and provide meaningful suggestions and support. I'll be in the wings cheering all on from the sideline. As always...
    Stay the course.
    Tom
     
  7. Sad
    Tom Galli got a reaction from Steff for a blog entry, LexieCat, Esquire Rests Her Case   
    LexieCat joined us on June 29, 2017 after taking advantage of low-dose CT screening for folks at risk for lung cancer. That test revealed a small highly suspicious single nodule that was surgically removed. She had a successful lobectomy; we all hoped she was one and done.
    Lexie, a screen name for Teri Garvey, was a district attorney in Camden, NJ. In my younger years, Camden, across the Delaware River from Philly, where I lived, was an industrious town bustling with shipbuilding, soup making (the Campbells Soup Company), distilling, and iron working. The deindustrialization of America hit Camden hard and when the jobs left, crime moved in. Camden, now a hard-edged town, made enforcing the law a dangerous occupation. But Teri was a tough lady, fearless, courageous, and dedicated to justice.
    We met in person during the 2018 LUNGevity Summit. She a lawyer, master of words and ideals, and I the engineer, entrenched in physics and things, discovered a fond friendship. Summits are our “shining city upon a hill”. Surviving lung cancer is a mighty forcing function. Our bond of survival transcends differences.
    Teri became a bastion of support for our forum. A witty quip-master, her parody of new drug names was quintessential Garvey—“…it makes me think of Buzz Lightyear: “To Imfinzi and beyond.” On starting combination chemo with immunotherapy, she offered: “My motto, walk softly and carry a big drug.” After a clean scan report a member, knowing of her broken collar bone, suggested she not do a happy dance. Teri responded: “Sadly, you know me all too well. [My] Childhood nickname—‘Princess Grace.’”
    Nearly 3 years after surgery, a scan showed tumors in her lung and sacrum. Her second-line treatment in September 2020 was combination chemo (carboplatin, Altima and Keytruda). Scans in April 2021 showed progression. She decided to join the arduous and risky Ivoance Tumor Infiltrating Lymphocytes (TIL) trial which ended early for her after 5 of 6 scheduled infusions. A good news scan was joyfully celebrated in July but by October, cancer cells were found while draining a pericardial effusion. Her defenses down from the TIL trial, Teri struggled to return to good health. She experienced a series of exhausting hospitalizations from October though the New Year that sapped her energy but not her fortitude. Cancer was beating her body not her spirit. In a private message, she sent me this photo with the quip: “I finally love my hair!” Teri chose hospice care on February 19, 2022. She passed surrounded by loved ones on February 25th.
    Teri was one of those very special people I’ve met on my life’s journey. Like so many, her diagnosis was a surprise. Her attitude after diagnosis is one to emulate. Teri told me lung cancer would not change her. She lived every minute of every day caring for people, seeking justice for victims, and helping the unfortunate. She told me she chose the risky TIL trial because it might help someone down the road. It might indeed.
    Stay the course.

  8. Like
    Tom Galli got a reaction from hillham for a blog entry, LexieCat, Esquire Rests Her Case   
    LexieCat joined us on June 29, 2017 after taking advantage of low-dose CT screening for folks at risk for lung cancer. That test revealed a small highly suspicious single nodule that was surgically removed. She had a successful lobectomy; we all hoped she was one and done.
    Lexie, a screen name for Teri Garvey, was a district attorney in Camden, NJ. In my younger years, Camden, across the Delaware River from Philly, where I lived, was an industrious town bustling with shipbuilding, soup making (the Campbells Soup Company), distilling, and iron working. The deindustrialization of America hit Camden hard and when the jobs left, crime moved in. Camden, now a hard-edged town, made enforcing the law a dangerous occupation. But Teri was a tough lady, fearless, courageous, and dedicated to justice.
    We met in person during the 2018 LUNGevity Summit. She a lawyer, master of words and ideals, and I the engineer, entrenched in physics and things, discovered a fond friendship. Summits are our “shining city upon a hill”. Surviving lung cancer is a mighty forcing function. Our bond of survival transcends differences.
    Teri became a bastion of support for our forum. A witty quip-master, her parody of new drug names was quintessential Garvey—“…it makes me think of Buzz Lightyear: “To Imfinzi and beyond.” On starting combination chemo with immunotherapy, she offered: “My motto, walk softly and carry a big drug.” After a clean scan report a member, knowing of her broken collar bone, suggested she not do a happy dance. Teri responded: “Sadly, you know me all too well. [My] Childhood nickname—‘Princess Grace.’”
    Nearly 3 years after surgery, a scan showed tumors in her lung and sacrum. Her second-line treatment in September 2020 was combination chemo (carboplatin, Altima and Keytruda). Scans in April 2021 showed progression. She decided to join the arduous and risky Ivoance Tumor Infiltrating Lymphocytes (TIL) trial which ended early for her after 5 of 6 scheduled infusions. A good news scan was joyfully celebrated in July but by October, cancer cells were found while draining a pericardial effusion. Her defenses down from the TIL trial, Teri struggled to return to good health. She experienced a series of exhausting hospitalizations from October though the New Year that sapped her energy but not her fortitude. Cancer was beating her body not her spirit. In a private message, she sent me this photo with the quip: “I finally love my hair!” Teri chose hospice care on February 19, 2022. She passed surrounded by loved ones on February 25th.
    Teri was one of those very special people I’ve met on my life’s journey. Like so many, her diagnosis was a surprise. Her attitude after diagnosis is one to emulate. Teri told me lung cancer would not change her. She lived every minute of every day caring for people, seeking justice for victims, and helping the unfortunate. She told me she chose the risky TIL trial because it might help someone down the road. It might indeed.
    Stay the course.

  9. Like
    Tom Galli got a reaction from ChiMama for a blog entry, The Stigma   
    "You have lung cancer. You don't belong here. You gave the disease to yourself!" Those words represent an admonishment bordering on scorn that greeted my first and only in-person cancer support group session. It was fortunately small, populated by ladies, all who had breast cancer. 
    I smoked; my entire family smoked. I also served as a career US Army officer. I spent months breathing oil fire smoke during the First Gulf War; have instant olfactory recognition of "burn barrel smoke" so prevalent in Army encampments; and lived 9 years in places with high radon gas concentration. I am the only one in my family with lung cancer. Might environmental exposure be my cause?
    We are entangled in a culture of blame. Devastation is not bad enough; we are compelled to make it worse by blaming. Then we shame! We do it over and over. To what end? What is solved? Here is one very sad casualty. Many who join our Forum these days are never smokers. Yet they are instantly branded by The Stigma! It starts early. Almost the first question asked by their medical team is: did you smoke? How does the answer change treatment or outcomes?
    There is another causality. Blame is a blocker to low-dose CT screening participation, particularly in the US veteran community. Who, after honorable service, wants to submit to a CT scan when the outcome leads to scorn? The chance of doing nothing appears preferable to the limelight of diagnosis.
    Even language used to characterize scan eligibility is blame-tinged. Who wants to admit to being a “20-pack year” smoker? No wonder less than 10% of the eligible population actually agree to a low dose scan. One must sign a piece of paper certifying smoking history, and that dresses the stage for blame and shame!
    We need to be done with this!
    Stay the course.
  10. Like
    Tom Galli got a reaction from LilyMir for a blog entry, LexieCat, Esquire Rests Her Case   
    LexieCat joined us on June 29, 2017 after taking advantage of low-dose CT screening for folks at risk for lung cancer. That test revealed a small highly suspicious single nodule that was surgically removed. She had a successful lobectomy; we all hoped she was one and done.
    Lexie, a screen name for Teri Garvey, was a district attorney in Camden, NJ. In my younger years, Camden, across the Delaware River from Philly, where I lived, was an industrious town bustling with shipbuilding, soup making (the Campbells Soup Company), distilling, and iron working. The deindustrialization of America hit Camden hard and when the jobs left, crime moved in. Camden, now a hard-edged town, made enforcing the law a dangerous occupation. But Teri was a tough lady, fearless, courageous, and dedicated to justice.
    We met in person during the 2018 LUNGevity Summit. She a lawyer, master of words and ideals, and I the engineer, entrenched in physics and things, discovered a fond friendship. Summits are our “shining city upon a hill”. Surviving lung cancer is a mighty forcing function. Our bond of survival transcends differences.
    Teri became a bastion of support for our forum. A witty quip-master, her parody of new drug names was quintessential Garvey—“…it makes me think of Buzz Lightyear: “To Imfinzi and beyond.” On starting combination chemo with immunotherapy, she offered: “My motto, walk softly and carry a big drug.” After a clean scan report a member, knowing of her broken collar bone, suggested she not do a happy dance. Teri responded: “Sadly, you know me all too well. [My] Childhood nickname—‘Princess Grace.’”
    Nearly 3 years after surgery, a scan showed tumors in her lung and sacrum. Her second-line treatment in September 2020 was combination chemo (carboplatin, Altima and Keytruda). Scans in April 2021 showed progression. She decided to join the arduous and risky Ivoance Tumor Infiltrating Lymphocytes (TIL) trial which ended early for her after 5 of 6 scheduled infusions. A good news scan was joyfully celebrated in July but by October, cancer cells were found while draining a pericardial effusion. Her defenses down from the TIL trial, Teri struggled to return to good health. She experienced a series of exhausting hospitalizations from October though the New Year that sapped her energy but not her fortitude. Cancer was beating her body not her spirit. In a private message, she sent me this photo with the quip: “I finally love my hair!” Teri chose hospice care on February 19, 2022. She passed surrounded by loved ones on February 25th.
    Teri was one of those very special people I’ve met on my life’s journey. Like so many, her diagnosis was a surprise. Her attitude after diagnosis is one to emulate. Teri told me lung cancer would not change her. She lived every minute of every day caring for people, seeking justice for victims, and helping the unfortunate. She told me she chose the risky TIL trial because it might help someone down the road. It might indeed.
    Stay the course.

  11. Thanks
    Tom Galli got a reaction from Sallysh for a blog entry, 10 Steps to Surviving Lung Cancer from a Survivor   
    MY STEPS TO SURVIVING A LUNG CANCER DIAGNOSIS
    Step 1 – Invest in sophisticated diagnosics before diagnosis
    If you smoke, were a long-term smoker, or are in an occupation that exposes you to carcinogenic toxins (asbestos removal, auto mechanic, painter, etc.), I suggest getting a computed tomography (CT) scan, often called a CAT scan, of the chest once a year. Insurance now covers it and CT will detect tumors far earlier than a chest x-ray. Early detection of small tumors dramatically enhances your survival chances. I had a chest x-ray in January 2004 and was diagnosed with stage 3b, non-small cell lung cancer the following month. The tumor hadn’t shown on the x-ray; but at diagnosis, it was almost 3 inches long and ½ inch in diameter. The only symptom I had was coughing up blood the day before diagnosis. Learn more about early CT screening.
    Step 2 – Choose a good general practitioner 
    Your general practitioner may be the manager of your lung cancer treatment. The GP likely will pick your cancer team and may need to do a little arm-twisting to get things moving. Therefore, there can be great benefits to having a GP who is seasoned and well known in the medical community. I prefer doctors of osteopathic medicine to medical doctors. I’ve found that in my experience the former treat people, not patients. I believe a good physician shows kindness, consideration, and compassion toward those in his or her care. These characteristics are essential. Be sure you know your GP and your GP knows you. Such knowledge and trust will give you a survival edge. There are great health care professionals out there.
    Step 3 – Ensure your oncologist is a physician
    A doctor has a degree in medicine and a license to practice. A physician is devoted to restoring, maintaining, and promoting your good health. My physician oncologist does a complete examination (looks in eyes, nose, and throat, checks pulse in the extremities, checks reflexes, listens to breathing and heart rate) every visit. He reviews and explains all test results and asks how I feel. He looks at me as I speak, and he listens and makes notes on what I say. He carefully explains medical treatment alternatives that may arrest the disease, and together we choose each next step. He never rushes consultations and, consequently, often is late to scheduled appointments. Because his tardiness results from spending time with those he treats, I know he cares about me and every other patient. These are some characteristics your physician oncologist should possess.
    Step 4 – Learn about your disease
    At diagnosis, I had no idea what lung cancer was. Moreover, I didn’t know what an oncologist did, nor could I spell the word! After diagnosis, I read everything I could find about the disease; a good resource is the www.LUNGevity.org website. Then I read medical journals, government reports, research papers, and studies. I made notes about things I didn’t understand and asked questions at my oncology consultations. My wife attended every consultation, procedure, and test to ensure every question was asked and answered, and that we understood the answers. You need to know about type, stage, statistics, radiation, diagnostics, chemotherapy, side effects, surgical options, and so much more. Your chances of survival are improved if you are informed enough to ask highly perceptive questions.
    Step 5 – Acquire a sanguine attitude quickly
    Cancer is a disease of death; lung cancer kills more than all other cancers. Your attitude toward treatment is, I believe, essential to survival. When you acquire a sanguine attitude, your treatment team will notice your optimism. They will enjoy interacting with you; they will care about you. I strongly suggest you read Stephen Jay Gould’s essay “The Median Isn’t the Message” to help you understand survival statistics and find optimism about what appear to be bleak probability of survival projections. Join a cancer blog or messageboard. I am a member of several where I can broadcast my complaints and protestations to people who understand and have useful advice for coping. Find cancer support groups and join one. Most people who treat you have no idea how you are feeling. But survivors in cancer support groups understand; they know how you feel—you’ll fit right in!
    Step 6 – Any port in a storm
    There is no such thing as “a little stick!” During procedures and treatment, almost everyone will attempt to gain access to your veins with an intravenous device of some type. All such intrusions are uncomfortable, and unless the practitioner is good and lucky he or she will miss more often than not. If your treatment involves intravenously administered chemotherapy, you likely will get stuck at least once a week. A good way to avoid discomfort and frustration is to ask for a port. Installation involves simple, low-risk surgery. Once in place, you need to keep the area clean and exercise precautions when bathing—but access to your veins is no longer a storm but a port in a storm!
    Step 7 – Don’t believe the miracle cure
    The consequences of a lung cancer diagnosis are frightening. For most, it will be your first serious encounter with the prospect of death. When you type “lung cancer” into Google, you will be bombarded by advertisement that promises miracle cure at considerable expense. There is no such thing as a miracle cure! Before you invest time (now precious) investigating one of these “too good to be true” remedies, check it out on www.quackwatch.org and discuss it with your physician. Oncology is a medical science. Procedures, drugs, and protocols are tested using scientific methods that are published and reviewed by peers and regulating organizations. When science-based breakthroughs are discovered, they are broadcast very quickly throughout the practitioner community.Read about Steve Jobs—one of the smartest technologists and businessmen the world has ever known—who delayed his cancer treatment.
    Step 8 – Don’t try to tough it out
    I am a retired soldier and believed I was man enough to handle almost anything. Cancer proved to be the “anything” I could not handle! I suffered a long time trying to tough it out before I admitted I was depressed. My physician’s response: “Of course you are depressed—how could you not be?” He prescribed appropriate medication, arranged consultations with a psychologist, and suggested I attend support groups. Unless you are tougher than I, you will experience depression. Admit it and accept help. Here are some other things you might try. Ask for the “freeze spray” before an IV is used. If claustrophobic, get a script for Xanax and take it shortly before scans. Even in summer, wear warm clothing to diagnostic and infusion sessions. Some areas where these take place are kept very cold. Many treatment centers have volunteers—engage one in conversation. Many are survivors or caregivers and have a wealth of helpful information. During consultations, I was so frightened I couldn’t rationally ask questions about results or next steps, and I certainly couldn’t remember what was said. Consequently, I never go alone to a consultation. I suggest if you can, always have someone with you too.
    Step 9 – Become a calendar maniac
    If you have a smartphone with a calendar application, become an expert in its use. If not, keep a paper “cancer calendar” to record information. Your life after diagnosis will likely become filled with scheduled appointments, and given the nature of the disease and intensity of the battle, these are appointments you don’t want to miss. For example, my chemotherapy cycle required an infusion every third Friday. I had to record three rounds of steroid medication taken every six hours before each infusion. I had a scheduled blood test every Monday following infusion. Nausea started Sunday morning and lasted until Tuesday. Joint pain started Wednesday and lasted until Saturday. If I took the nausea medication about an hour before onset, symptoms often were minimal. Furthermore, if I started pain medication a couple of hours before onset, my pain was manageable. I used the alarm feature on my phone to warn me in advance. Plus, there was life to live, and the calendar helped me avoid conflicts between my cancer treatment schedule and my life events schedule.
    Step 10 – Choose to live
    When asked about my cancer experience, I often tell those in treatment that cancer is a disease of life or death. I believe if you choose treatment, you are choosing life. And if you choose to live, do something with the life you are given. The “something” will be different for each of us, but doing whatever you enjoy or find fulfilling is so important. If you enjoyed an activity before diagnosis, do it afterward. Look at yourself in the mirror every morning. If you don’t see an expiration date stamped on your forehead, then enjoy the day and look forward to the next! Oh, by the way, your hair will grow back! Baldness is a beautiful badge of courage.
    Stay the course.
  12. Like
    Tom Galli got a reaction from BridgetO for a blog entry, The Stigma   
    "You have lung cancer. You don't belong here. You gave the disease to yourself!" Those words represent an admonishment bordering on scorn that greeted my first and only in-person cancer support group session. It was fortunately small, populated by ladies, all who had breast cancer. 
    I smoked; my entire family smoked. I also served as a career US Army officer. I spent months breathing oil fire smoke during the First Gulf War; have instant olfactory recognition of "burn barrel smoke" so prevalent in Army encampments; and lived 9 years in places with high radon gas concentration. I am the only one in my family with lung cancer. Might environmental exposure be my cause?
    We are entangled in a culture of blame. Devastation is not bad enough; we are compelled to make it worse by blaming. Then we shame! We do it over and over. To what end? What is solved? Here is one very sad casualty. Many who join our Forum these days are never smokers. Yet they are instantly branded by The Stigma! It starts early. Almost the first question asked by their medical team is: did you smoke? How does the answer change treatment or outcomes?
    There is another causality. Blame is a blocker to low-dose CT screening participation, particularly in the US veteran community. Who, after honorable service, wants to submit to a CT scan when the outcome leads to scorn? The chance of doing nothing appears preferable to the limelight of diagnosis.
    Even language used to characterize scan eligibility is blame-tinged. Who wants to admit to being a “20-pack year” smoker? No wonder less than 10% of the eligible population actually agree to a low dose scan. One must sign a piece of paper certifying smoking history, and that dresses the stage for blame and shame!
    We need to be done with this!
    Stay the course.
  13. Like
    Tom Galli got a reaction from Justin1970 for a blog entry, The Stigma   
    "You have lung cancer. You don't belong here. You gave the disease to yourself!" Those words represent an admonishment bordering on scorn that greeted my first and only in-person cancer support group session. It was fortunately small, populated by ladies, all who had breast cancer. 
    I smoked; my entire family smoked. I also served as a career US Army officer. I spent months breathing oil fire smoke during the First Gulf War; have instant olfactory recognition of "burn barrel smoke" so prevalent in Army encampments; and lived 9 years in places with high radon gas concentration. I am the only one in my family with lung cancer. Might environmental exposure be my cause?
    We are entangled in a culture of blame. Devastation is not bad enough; we are compelled to make it worse by blaming. Then we shame! We do it over and over. To what end? What is solved? Here is one very sad casualty. Many who join our Forum these days are never smokers. Yet they are instantly branded by The Stigma! It starts early. Almost the first question asked by their medical team is: did you smoke? How does the answer change treatment or outcomes?
    There is another causality. Blame is a blocker to low-dose CT screening participation, particularly in the US veteran community. Who, after honorable service, wants to submit to a CT scan when the outcome leads to scorn? The chance of doing nothing appears preferable to the limelight of diagnosis.
    Even language used to characterize scan eligibility is blame-tinged. Who wants to admit to being a “20-pack year” smoker? No wonder less than 10% of the eligible population actually agree to a low dose scan. One must sign a piece of paper certifying smoking history, and that dresses the stage for blame and shame!
    We need to be done with this!
    Stay the course.
  14. Like
    Tom Galli got a reaction from LilyMir for a blog entry, The Stigma   
    "You have lung cancer. You don't belong here. You gave the disease to yourself!" Those words represent an admonishment bordering on scorn that greeted my first and only in-person cancer support group session. It was fortunately small, populated by ladies, all who had breast cancer. 
    I smoked; my entire family smoked. I also served as a career US Army officer. I spent months breathing oil fire smoke during the First Gulf War; have instant olfactory recognition of "burn barrel smoke" so prevalent in Army encampments; and lived 9 years in places with high radon gas concentration. I am the only one in my family with lung cancer. Might environmental exposure be my cause?
    We are entangled in a culture of blame. Devastation is not bad enough; we are compelled to make it worse by blaming. Then we shame! We do it over and over. To what end? What is solved? Here is one very sad casualty. Many who join our Forum these days are never smokers. Yet they are instantly branded by The Stigma! It starts early. Almost the first question asked by their medical team is: did you smoke? How does the answer change treatment or outcomes?
    There is another causality. Blame is a blocker to low-dose CT screening participation, particularly in the US veteran community. Who, after honorable service, wants to submit to a CT scan when the outcome leads to scorn? The chance of doing nothing appears preferable to the limelight of diagnosis.
    Even language used to characterize scan eligibility is blame-tinged. Who wants to admit to being a “20-pack year” smoker? No wonder less than 10% of the eligible population actually agree to a low dose scan. One must sign a piece of paper certifying smoking history, and that dresses the stage for blame and shame!
    We need to be done with this!
    Stay the course.
  15. Like
    Tom Galli got a reaction from Karen_L for a blog entry, Hospice For Sale   
    I’ve been raging against scam cancer cures for almost 2 decades. Now I learn there is an expanding for-profit hospice industry that is transforming hospice care into a world of fraud and incompetent “care”.
    Please read this November 28, 2022 expose in The New Yorker Magazine titled For-Profit Hustle.
    This forum exists to provide information and comfort to those diagnosed with lung cancer. When facing slim odds at the end of my treatment rope, I was comforted knowing a reputable and caring hospice provider would ease my end-of-life struggles. That was nearly 20 years ago. Things have dramatically changed, and this change is frightening!
    Here are excerpts from the expose.
    Hospice care is sold as alternative medical care. For profit hospice providers bribe physicians to bring new patients. Social media is mined to identify and enroll phantom patients. You might be surprised to find yourself enrolled in hospice! False Claims Act settlements resemble a protection racket: hospice executives keep their jobs, companies keep billing Medicare, whistle-blowers and their lawyers get a cut, and Justin Department attorneys cash in by moving to defend companies they once prosecuted. Hospice fraud trial judges are on the take! Turnkey-ready hospice business in Montana, Texas and Tennessee are on sale, now! How do we know a for-profit hospice provider is legitimate? After reading this expose, I don’t. Be very, very careful investigating a hospice provider. Find out who is the medical director. Ask every member of your medical team if they know the hospice provider and medical director. Ask if there are complaints. Run away from someone selling hospice care.
    Be careful out there!
    Stay the course.
  16. Thanks
    Tom Galli got a reaction from YU092022 for a blog entry, 10 Steps to Surviving Lung Cancer from a Survivor   
    MY STEPS TO SURVIVING A LUNG CANCER DIAGNOSIS
    Step 1 – Invest in sophisticated diagnosics before diagnosis
    If you smoke, were a long-term smoker, or are in an occupation that exposes you to carcinogenic toxins (asbestos removal, auto mechanic, painter, etc.), I suggest getting a computed tomography (CT) scan, often called a CAT scan, of the chest once a year. Insurance now covers it and CT will detect tumors far earlier than a chest x-ray. Early detection of small tumors dramatically enhances your survival chances. I had a chest x-ray in January 2004 and was diagnosed with stage 3b, non-small cell lung cancer the following month. The tumor hadn’t shown on the x-ray; but at diagnosis, it was almost 3 inches long and ½ inch in diameter. The only symptom I had was coughing up blood the day before diagnosis. Learn more about early CT screening.
    Step 2 – Choose a good general practitioner 
    Your general practitioner may be the manager of your lung cancer treatment. The GP likely will pick your cancer team and may need to do a little arm-twisting to get things moving. Therefore, there can be great benefits to having a GP who is seasoned and well known in the medical community. I prefer doctors of osteopathic medicine to medical doctors. I’ve found that in my experience the former treat people, not patients. I believe a good physician shows kindness, consideration, and compassion toward those in his or her care. These characteristics are essential. Be sure you know your GP and your GP knows you. Such knowledge and trust will give you a survival edge. There are great health care professionals out there.
    Step 3 – Ensure your oncologist is a physician
    A doctor has a degree in medicine and a license to practice. A physician is devoted to restoring, maintaining, and promoting your good health. My physician oncologist does a complete examination (looks in eyes, nose, and throat, checks pulse in the extremities, checks reflexes, listens to breathing and heart rate) every visit. He reviews and explains all test results and asks how I feel. He looks at me as I speak, and he listens and makes notes on what I say. He carefully explains medical treatment alternatives that may arrest the disease, and together we choose each next step. He never rushes consultations and, consequently, often is late to scheduled appointments. Because his tardiness results from spending time with those he treats, I know he cares about me and every other patient. These are some characteristics your physician oncologist should possess.
    Step 4 – Learn about your disease
    At diagnosis, I had no idea what lung cancer was. Moreover, I didn’t know what an oncologist did, nor could I spell the word! After diagnosis, I read everything I could find about the disease; a good resource is the www.LUNGevity.org website. Then I read medical journals, government reports, research papers, and studies. I made notes about things I didn’t understand and asked questions at my oncology consultations. My wife attended every consultation, procedure, and test to ensure every question was asked and answered, and that we understood the answers. You need to know about type, stage, statistics, radiation, diagnostics, chemotherapy, side effects, surgical options, and so much more. Your chances of survival are improved if you are informed enough to ask highly perceptive questions.
    Step 5 – Acquire a sanguine attitude quickly
    Cancer is a disease of death; lung cancer kills more than all other cancers. Your attitude toward treatment is, I believe, essential to survival. When you acquire a sanguine attitude, your treatment team will notice your optimism. They will enjoy interacting with you; they will care about you. I strongly suggest you read Stephen Jay Gould’s essay “The Median Isn’t the Message” to help you understand survival statistics and find optimism about what appear to be bleak probability of survival projections. Join a cancer blog or messageboard. I am a member of several where I can broadcast my complaints and protestations to people who understand and have useful advice for coping. Find cancer support groups and join one. Most people who treat you have no idea how you are feeling. But survivors in cancer support groups understand; they know how you feel—you’ll fit right in!
    Step 6 – Any port in a storm
    There is no such thing as “a little stick!” During procedures and treatment, almost everyone will attempt to gain access to your veins with an intravenous device of some type. All such intrusions are uncomfortable, and unless the practitioner is good and lucky he or she will miss more often than not. If your treatment involves intravenously administered chemotherapy, you likely will get stuck at least once a week. A good way to avoid discomfort and frustration is to ask for a port. Installation involves simple, low-risk surgery. Once in place, you need to keep the area clean and exercise precautions when bathing—but access to your veins is no longer a storm but a port in a storm!
    Step 7 – Don’t believe the miracle cure
    The consequences of a lung cancer diagnosis are frightening. For most, it will be your first serious encounter with the prospect of death. When you type “lung cancer” into Google, you will be bombarded by advertisement that promises miracle cure at considerable expense. There is no such thing as a miracle cure! Before you invest time (now precious) investigating one of these “too good to be true” remedies, check it out on www.quackwatch.org and discuss it with your physician. Oncology is a medical science. Procedures, drugs, and protocols are tested using scientific methods that are published and reviewed by peers and regulating organizations. When science-based breakthroughs are discovered, they are broadcast very quickly throughout the practitioner community.Read about Steve Jobs—one of the smartest technologists and businessmen the world has ever known—who delayed his cancer treatment.
    Step 8 – Don’t try to tough it out
    I am a retired soldier and believed I was man enough to handle almost anything. Cancer proved to be the “anything” I could not handle! I suffered a long time trying to tough it out before I admitted I was depressed. My physician’s response: “Of course you are depressed—how could you not be?” He prescribed appropriate medication, arranged consultations with a psychologist, and suggested I attend support groups. Unless you are tougher than I, you will experience depression. Admit it and accept help. Here are some other things you might try. Ask for the “freeze spray” before an IV is used. If claustrophobic, get a script for Xanax and take it shortly before scans. Even in summer, wear warm clothing to diagnostic and infusion sessions. Some areas where these take place are kept very cold. Many treatment centers have volunteers—engage one in conversation. Many are survivors or caregivers and have a wealth of helpful information. During consultations, I was so frightened I couldn’t rationally ask questions about results or next steps, and I certainly couldn’t remember what was said. Consequently, I never go alone to a consultation. I suggest if you can, always have someone with you too.
    Step 9 – Become a calendar maniac
    If you have a smartphone with a calendar application, become an expert in its use. If not, keep a paper “cancer calendar” to record information. Your life after diagnosis will likely become filled with scheduled appointments, and given the nature of the disease and intensity of the battle, these are appointments you don’t want to miss. For example, my chemotherapy cycle required an infusion every third Friday. I had to record three rounds of steroid medication taken every six hours before each infusion. I had a scheduled blood test every Monday following infusion. Nausea started Sunday morning and lasted until Tuesday. Joint pain started Wednesday and lasted until Saturday. If I took the nausea medication about an hour before onset, symptoms often were minimal. Furthermore, if I started pain medication a couple of hours before onset, my pain was manageable. I used the alarm feature on my phone to warn me in advance. Plus, there was life to live, and the calendar helped me avoid conflicts between my cancer treatment schedule and my life events schedule.
    Step 10 – Choose to live
    When asked about my cancer experience, I often tell those in treatment that cancer is a disease of life or death. I believe if you choose treatment, you are choosing life. And if you choose to live, do something with the life you are given. The “something” will be different for each of us, but doing whatever you enjoy or find fulfilling is so important. If you enjoyed an activity before diagnosis, do it afterward. Look at yourself in the mirror every morning. If you don’t see an expiration date stamped on your forehead, then enjoy the day and look forward to the next! Oh, by the way, your hair will grow back! Baldness is a beautiful badge of courage.
    Stay the course.
  17. Like
    Tom Galli got a reaction from LJH for a blog entry, 10 Steps to Surviving Lung Cancer from a Survivor   
    MY STEPS TO SURVIVING A LUNG CANCER DIAGNOSIS
    Step 1 – Invest in sophisticated diagnosics before diagnosis
    If you smoke, were a long-term smoker, or are in an occupation that exposes you to carcinogenic toxins (asbestos removal, auto mechanic, painter, etc.), I suggest getting a computed tomography (CT) scan, often called a CAT scan, of the chest once a year. Insurance now covers it and CT will detect tumors far earlier than a chest x-ray. Early detection of small tumors dramatically enhances your survival chances. I had a chest x-ray in January 2004 and was diagnosed with stage 3b, non-small cell lung cancer the following month. The tumor hadn’t shown on the x-ray; but at diagnosis, it was almost 3 inches long and ½ inch in diameter. The only symptom I had was coughing up blood the day before diagnosis. Learn more about early CT screening.
    Step 2 – Choose a good general practitioner 
    Your general practitioner may be the manager of your lung cancer treatment. The GP likely will pick your cancer team and may need to do a little arm-twisting to get things moving. Therefore, there can be great benefits to having a GP who is seasoned and well known in the medical community. I prefer doctors of osteopathic medicine to medical doctors. I’ve found that in my experience the former treat people, not patients. I believe a good physician shows kindness, consideration, and compassion toward those in his or her care. These characteristics are essential. Be sure you know your GP and your GP knows you. Such knowledge and trust will give you a survival edge. There are great health care professionals out there.
    Step 3 – Ensure your oncologist is a physician
    A doctor has a degree in medicine and a license to practice. A physician is devoted to restoring, maintaining, and promoting your good health. My physician oncologist does a complete examination (looks in eyes, nose, and throat, checks pulse in the extremities, checks reflexes, listens to breathing and heart rate) every visit. He reviews and explains all test results and asks how I feel. He looks at me as I speak, and he listens and makes notes on what I say. He carefully explains medical treatment alternatives that may arrest the disease, and together we choose each next step. He never rushes consultations and, consequently, often is late to scheduled appointments. Because his tardiness results from spending time with those he treats, I know he cares about me and every other patient. These are some characteristics your physician oncologist should possess.
    Step 4 – Learn about your disease
    At diagnosis, I had no idea what lung cancer was. Moreover, I didn’t know what an oncologist did, nor could I spell the word! After diagnosis, I read everything I could find about the disease; a good resource is the www.LUNGevity.org website. Then I read medical journals, government reports, research papers, and studies. I made notes about things I didn’t understand and asked questions at my oncology consultations. My wife attended every consultation, procedure, and test to ensure every question was asked and answered, and that we understood the answers. You need to know about type, stage, statistics, radiation, diagnostics, chemotherapy, side effects, surgical options, and so much more. Your chances of survival are improved if you are informed enough to ask highly perceptive questions.
    Step 5 – Acquire a sanguine attitude quickly
    Cancer is a disease of death; lung cancer kills more than all other cancers. Your attitude toward treatment is, I believe, essential to survival. When you acquire a sanguine attitude, your treatment team will notice your optimism. They will enjoy interacting with you; they will care about you. I strongly suggest you read Stephen Jay Gould’s essay “The Median Isn’t the Message” to help you understand survival statistics and find optimism about what appear to be bleak probability of survival projections. Join a cancer blog or messageboard. I am a member of several where I can broadcast my complaints and protestations to people who understand and have useful advice for coping. Find cancer support groups and join one. Most people who treat you have no idea how you are feeling. But survivors in cancer support groups understand; they know how you feel—you’ll fit right in!
    Step 6 – Any port in a storm
    There is no such thing as “a little stick!” During procedures and treatment, almost everyone will attempt to gain access to your veins with an intravenous device of some type. All such intrusions are uncomfortable, and unless the practitioner is good and lucky he or she will miss more often than not. If your treatment involves intravenously administered chemotherapy, you likely will get stuck at least once a week. A good way to avoid discomfort and frustration is to ask for a port. Installation involves simple, low-risk surgery. Once in place, you need to keep the area clean and exercise precautions when bathing—but access to your veins is no longer a storm but a port in a storm!
    Step 7 – Don’t believe the miracle cure
    The consequences of a lung cancer diagnosis are frightening. For most, it will be your first serious encounter with the prospect of death. When you type “lung cancer” into Google, you will be bombarded by advertisement that promises miracle cure at considerable expense. There is no such thing as a miracle cure! Before you invest time (now precious) investigating one of these “too good to be true” remedies, check it out on www.quackwatch.org and discuss it with your physician. Oncology is a medical science. Procedures, drugs, and protocols are tested using scientific methods that are published and reviewed by peers and regulating organizations. When science-based breakthroughs are discovered, they are broadcast very quickly throughout the practitioner community.Read about Steve Jobs—one of the smartest technologists and businessmen the world has ever known—who delayed his cancer treatment.
    Step 8 – Don’t try to tough it out
    I am a retired soldier and believed I was man enough to handle almost anything. Cancer proved to be the “anything” I could not handle! I suffered a long time trying to tough it out before I admitted I was depressed. My physician’s response: “Of course you are depressed—how could you not be?” He prescribed appropriate medication, arranged consultations with a psychologist, and suggested I attend support groups. Unless you are tougher than I, you will experience depression. Admit it and accept help. Here are some other things you might try. Ask for the “freeze spray” before an IV is used. If claustrophobic, get a script for Xanax and take it shortly before scans. Even in summer, wear warm clothing to diagnostic and infusion sessions. Some areas where these take place are kept very cold. Many treatment centers have volunteers—engage one in conversation. Many are survivors or caregivers and have a wealth of helpful information. During consultations, I was so frightened I couldn’t rationally ask questions about results or next steps, and I certainly couldn’t remember what was said. Consequently, I never go alone to a consultation. I suggest if you can, always have someone with you too.
    Step 9 – Become a calendar maniac
    If you have a smartphone with a calendar application, become an expert in its use. If not, keep a paper “cancer calendar” to record information. Your life after diagnosis will likely become filled with scheduled appointments, and given the nature of the disease and intensity of the battle, these are appointments you don’t want to miss. For example, my chemotherapy cycle required an infusion every third Friday. I had to record three rounds of steroid medication taken every six hours before each infusion. I had a scheduled blood test every Monday following infusion. Nausea started Sunday morning and lasted until Tuesday. Joint pain started Wednesday and lasted until Saturday. If I took the nausea medication about an hour before onset, symptoms often were minimal. Furthermore, if I started pain medication a couple of hours before onset, my pain was manageable. I used the alarm feature on my phone to warn me in advance. Plus, there was life to live, and the calendar helped me avoid conflicts between my cancer treatment schedule and my life events schedule.
    Step 10 – Choose to live
    When asked about my cancer experience, I often tell those in treatment that cancer is a disease of life or death. I believe if you choose treatment, you are choosing life. And if you choose to live, do something with the life you are given. The “something” will be different for each of us, but doing whatever you enjoy or find fulfilling is so important. If you enjoyed an activity before diagnosis, do it afterward. Look at yourself in the mirror every morning. If you don’t see an expiration date stamped on your forehead, then enjoy the day and look forward to the next! Oh, by the way, your hair will grow back! Baldness is a beautiful badge of courage.
    Stay the course.
  18. Like
    Tom Galli got a reaction from RonH for a blog entry, LexieCat, Esquire Rests Her Case   
    LexieCat joined us on June 29, 2017 after taking advantage of low-dose CT screening for folks at risk for lung cancer. That test revealed a small highly suspicious single nodule that was surgically removed. She had a successful lobectomy; we all hoped she was one and done.
    Lexie, a screen name for Teri Garvey, was a district attorney in Camden, NJ. In my younger years, Camden, across the Delaware River from Philly, where I lived, was an industrious town bustling with shipbuilding, soup making (the Campbells Soup Company), distilling, and iron working. The deindustrialization of America hit Camden hard and when the jobs left, crime moved in. Camden, now a hard-edged town, made enforcing the law a dangerous occupation. But Teri was a tough lady, fearless, courageous, and dedicated to justice.
    We met in person during the 2018 LUNGevity Summit. She a lawyer, master of words and ideals, and I the engineer, entrenched in physics and things, discovered a fond friendship. Summits are our “shining city upon a hill”. Surviving lung cancer is a mighty forcing function. Our bond of survival transcends differences.
    Teri became a bastion of support for our forum. A witty quip-master, her parody of new drug names was quintessential Garvey—“…it makes me think of Buzz Lightyear: “To Imfinzi and beyond.” On starting combination chemo with immunotherapy, she offered: “My motto, walk softly and carry a big drug.” After a clean scan report a member, knowing of her broken collar bone, suggested she not do a happy dance. Teri responded: “Sadly, you know me all too well. [My] Childhood nickname—‘Princess Grace.’”
    Nearly 3 years after surgery, a scan showed tumors in her lung and sacrum. Her second-line treatment in September 2020 was combination chemo (carboplatin, Altima and Keytruda). Scans in April 2021 showed progression. She decided to join the arduous and risky Ivoance Tumor Infiltrating Lymphocytes (TIL) trial which ended early for her after 5 of 6 scheduled infusions. A good news scan was joyfully celebrated in July but by October, cancer cells were found while draining a pericardial effusion. Her defenses down from the TIL trial, Teri struggled to return to good health. She experienced a series of exhausting hospitalizations from October though the New Year that sapped her energy but not her fortitude. Cancer was beating her body not her spirit. In a private message, she sent me this photo with the quip: “I finally love my hair!” Teri chose hospice care on February 19, 2022. She passed surrounded by loved ones on February 25th.
    Teri was one of those very special people I’ve met on my life’s journey. Like so many, her diagnosis was a surprise. Her attitude after diagnosis is one to emulate. Teri told me lung cancer would not change her. She lived every minute of every day caring for people, seeking justice for victims, and helping the unfortunate. She told me she chose the risky TIL trial because it might help someone down the road. It might indeed.
    Stay the course.

  19. Thanks
    Tom Galli got a reaction from PaulaC for a blog entry, 10 Steps to Surviving Lung Cancer from a Survivor   
    MY STEPS TO SURVIVING A LUNG CANCER DIAGNOSIS
    Step 1 – Invest in sophisticated diagnosics before diagnosis
    If you smoke, were a long-term smoker, or are in an occupation that exposes you to carcinogenic toxins (asbestos removal, auto mechanic, painter, etc.), I suggest getting a computed tomography (CT) scan, often called a CAT scan, of the chest once a year. Insurance now covers it and CT will detect tumors far earlier than a chest x-ray. Early detection of small tumors dramatically enhances your survival chances. I had a chest x-ray in January 2004 and was diagnosed with stage 3b, non-small cell lung cancer the following month. The tumor hadn’t shown on the x-ray; but at diagnosis, it was almost 3 inches long and ½ inch in diameter. The only symptom I had was coughing up blood the day before diagnosis. Learn more about early CT screening.
    Step 2 – Choose a good general practitioner 
    Your general practitioner may be the manager of your lung cancer treatment. The GP likely will pick your cancer team and may need to do a little arm-twisting to get things moving. Therefore, there can be great benefits to having a GP who is seasoned and well known in the medical community. I prefer doctors of osteopathic medicine to medical doctors. I’ve found that in my experience the former treat people, not patients. I believe a good physician shows kindness, consideration, and compassion toward those in his or her care. These characteristics are essential. Be sure you know your GP and your GP knows you. Such knowledge and trust will give you a survival edge. There are great health care professionals out there.
    Step 3 – Ensure your oncologist is a physician
    A doctor has a degree in medicine and a license to practice. A physician is devoted to restoring, maintaining, and promoting your good health. My physician oncologist does a complete examination (looks in eyes, nose, and throat, checks pulse in the extremities, checks reflexes, listens to breathing and heart rate) every visit. He reviews and explains all test results and asks how I feel. He looks at me as I speak, and he listens and makes notes on what I say. He carefully explains medical treatment alternatives that may arrest the disease, and together we choose each next step. He never rushes consultations and, consequently, often is late to scheduled appointments. Because his tardiness results from spending time with those he treats, I know he cares about me and every other patient. These are some characteristics your physician oncologist should possess.
    Step 4 – Learn about your disease
    At diagnosis, I had no idea what lung cancer was. Moreover, I didn’t know what an oncologist did, nor could I spell the word! After diagnosis, I read everything I could find about the disease; a good resource is the www.LUNGevity.org website. Then I read medical journals, government reports, research papers, and studies. I made notes about things I didn’t understand and asked questions at my oncology consultations. My wife attended every consultation, procedure, and test to ensure every question was asked and answered, and that we understood the answers. You need to know about type, stage, statistics, radiation, diagnostics, chemotherapy, side effects, surgical options, and so much more. Your chances of survival are improved if you are informed enough to ask highly perceptive questions.
    Step 5 – Acquire a sanguine attitude quickly
    Cancer is a disease of death; lung cancer kills more than all other cancers. Your attitude toward treatment is, I believe, essential to survival. When you acquire a sanguine attitude, your treatment team will notice your optimism. They will enjoy interacting with you; they will care about you. I strongly suggest you read Stephen Jay Gould’s essay “The Median Isn’t the Message” to help you understand survival statistics and find optimism about what appear to be bleak probability of survival projections. Join a cancer blog or messageboard. I am a member of several where I can broadcast my complaints and protestations to people who understand and have useful advice for coping. Find cancer support groups and join one. Most people who treat you have no idea how you are feeling. But survivors in cancer support groups understand; they know how you feel—you’ll fit right in!
    Step 6 – Any port in a storm
    There is no such thing as “a little stick!” During procedures and treatment, almost everyone will attempt to gain access to your veins with an intravenous device of some type. All such intrusions are uncomfortable, and unless the practitioner is good and lucky he or she will miss more often than not. If your treatment involves intravenously administered chemotherapy, you likely will get stuck at least once a week. A good way to avoid discomfort and frustration is to ask for a port. Installation involves simple, low-risk surgery. Once in place, you need to keep the area clean and exercise precautions when bathing—but access to your veins is no longer a storm but a port in a storm!
    Step 7 – Don’t believe the miracle cure
    The consequences of a lung cancer diagnosis are frightening. For most, it will be your first serious encounter with the prospect of death. When you type “lung cancer” into Google, you will be bombarded by advertisement that promises miracle cure at considerable expense. There is no such thing as a miracle cure! Before you invest time (now precious) investigating one of these “too good to be true” remedies, check it out on www.quackwatch.org and discuss it with your physician. Oncology is a medical science. Procedures, drugs, and protocols are tested using scientific methods that are published and reviewed by peers and regulating organizations. When science-based breakthroughs are discovered, they are broadcast very quickly throughout the practitioner community.Read about Steve Jobs—one of the smartest technologists and businessmen the world has ever known—who delayed his cancer treatment.
    Step 8 – Don’t try to tough it out
    I am a retired soldier and believed I was man enough to handle almost anything. Cancer proved to be the “anything” I could not handle! I suffered a long time trying to tough it out before I admitted I was depressed. My physician’s response: “Of course you are depressed—how could you not be?” He prescribed appropriate medication, arranged consultations with a psychologist, and suggested I attend support groups. Unless you are tougher than I, you will experience depression. Admit it and accept help. Here are some other things you might try. Ask for the “freeze spray” before an IV is used. If claustrophobic, get a script for Xanax and take it shortly before scans. Even in summer, wear warm clothing to diagnostic and infusion sessions. Some areas where these take place are kept very cold. Many treatment centers have volunteers—engage one in conversation. Many are survivors or caregivers and have a wealth of helpful information. During consultations, I was so frightened I couldn’t rationally ask questions about results or next steps, and I certainly couldn’t remember what was said. Consequently, I never go alone to a consultation. I suggest if you can, always have someone with you too.
    Step 9 – Become a calendar maniac
    If you have a smartphone with a calendar application, become an expert in its use. If not, keep a paper “cancer calendar” to record information. Your life after diagnosis will likely become filled with scheduled appointments, and given the nature of the disease and intensity of the battle, these are appointments you don’t want to miss. For example, my chemotherapy cycle required an infusion every third Friday. I had to record three rounds of steroid medication taken every six hours before each infusion. I had a scheduled blood test every Monday following infusion. Nausea started Sunday morning and lasted until Tuesday. Joint pain started Wednesday and lasted until Saturday. If I took the nausea medication about an hour before onset, symptoms often were minimal. Furthermore, if I started pain medication a couple of hours before onset, my pain was manageable. I used the alarm feature on my phone to warn me in advance. Plus, there was life to live, and the calendar helped me avoid conflicts between my cancer treatment schedule and my life events schedule.
    Step 10 – Choose to live
    When asked about my cancer experience, I often tell those in treatment that cancer is a disease of life or death. I believe if you choose treatment, you are choosing life. And if you choose to live, do something with the life you are given. The “something” will be different for each of us, but doing whatever you enjoy or find fulfilling is so important. If you enjoyed an activity before diagnosis, do it afterward. Look at yourself in the mirror every morning. If you don’t see an expiration date stamped on your forehead, then enjoy the day and look forward to the next! Oh, by the way, your hair will grow back! Baldness is a beautiful badge of courage.
    Stay the course.
  20. Like
    Tom Galli got a reaction from Lahalsa for a blog entry, 10 Steps to Surviving Lung Cancer from a Survivor   
    MY STEPS TO SURVIVING A LUNG CANCER DIAGNOSIS
    Step 1 – Invest in sophisticated diagnosics before diagnosis
    If you smoke, were a long-term smoker, or are in an occupation that exposes you to carcinogenic toxins (asbestos removal, auto mechanic, painter, etc.), I suggest getting a computed tomography (CT) scan, often called a CAT scan, of the chest once a year. Insurance now covers it and CT will detect tumors far earlier than a chest x-ray. Early detection of small tumors dramatically enhances your survival chances. I had a chest x-ray in January 2004 and was diagnosed with stage 3b, non-small cell lung cancer the following month. The tumor hadn’t shown on the x-ray; but at diagnosis, it was almost 3 inches long and ½ inch in diameter. The only symptom I had was coughing up blood the day before diagnosis. Learn more about early CT screening.
    Step 2 – Choose a good general practitioner 
    Your general practitioner may be the manager of your lung cancer treatment. The GP likely will pick your cancer team and may need to do a little arm-twisting to get things moving. Therefore, there can be great benefits to having a GP who is seasoned and well known in the medical community. I prefer doctors of osteopathic medicine to medical doctors. I’ve found that in my experience the former treat people, not patients. I believe a good physician shows kindness, consideration, and compassion toward those in his or her care. These characteristics are essential. Be sure you know your GP and your GP knows you. Such knowledge and trust will give you a survival edge. There are great health care professionals out there.
    Step 3 – Ensure your oncologist is a physician
    A doctor has a degree in medicine and a license to practice. A physician is devoted to restoring, maintaining, and promoting your good health. My physician oncologist does a complete examination (looks in eyes, nose, and throat, checks pulse in the extremities, checks reflexes, listens to breathing and heart rate) every visit. He reviews and explains all test results and asks how I feel. He looks at me as I speak, and he listens and makes notes on what I say. He carefully explains medical treatment alternatives that may arrest the disease, and together we choose each next step. He never rushes consultations and, consequently, often is late to scheduled appointments. Because his tardiness results from spending time with those he treats, I know he cares about me and every other patient. These are some characteristics your physician oncologist should possess.
    Step 4 – Learn about your disease
    At diagnosis, I had no idea what lung cancer was. Moreover, I didn’t know what an oncologist did, nor could I spell the word! After diagnosis, I read everything I could find about the disease; a good resource is the www.LUNGevity.org website. Then I read medical journals, government reports, research papers, and studies. I made notes about things I didn’t understand and asked questions at my oncology consultations. My wife attended every consultation, procedure, and test to ensure every question was asked and answered, and that we understood the answers. You need to know about type, stage, statistics, radiation, diagnostics, chemotherapy, side effects, surgical options, and so much more. Your chances of survival are improved if you are informed enough to ask highly perceptive questions.
    Step 5 – Acquire a sanguine attitude quickly
    Cancer is a disease of death; lung cancer kills more than all other cancers. Your attitude toward treatment is, I believe, essential to survival. When you acquire a sanguine attitude, your treatment team will notice your optimism. They will enjoy interacting with you; they will care about you. I strongly suggest you read Stephen Jay Gould’s essay “The Median Isn’t the Message” to help you understand survival statistics and find optimism about what appear to be bleak probability of survival projections. Join a cancer blog or messageboard. I am a member of several where I can broadcast my complaints and protestations to people who understand and have useful advice for coping. Find cancer support groups and join one. Most people who treat you have no idea how you are feeling. But survivors in cancer support groups understand; they know how you feel—you’ll fit right in!
    Step 6 – Any port in a storm
    There is no such thing as “a little stick!” During procedures and treatment, almost everyone will attempt to gain access to your veins with an intravenous device of some type. All such intrusions are uncomfortable, and unless the practitioner is good and lucky he or she will miss more often than not. If your treatment involves intravenously administered chemotherapy, you likely will get stuck at least once a week. A good way to avoid discomfort and frustration is to ask for a port. Installation involves simple, low-risk surgery. Once in place, you need to keep the area clean and exercise precautions when bathing—but access to your veins is no longer a storm but a port in a storm!
    Step 7 – Don’t believe the miracle cure
    The consequences of a lung cancer diagnosis are frightening. For most, it will be your first serious encounter with the prospect of death. When you type “lung cancer” into Google, you will be bombarded by advertisement that promises miracle cure at considerable expense. There is no such thing as a miracle cure! Before you invest time (now precious) investigating one of these “too good to be true” remedies, check it out on www.quackwatch.org and discuss it with your physician. Oncology is a medical science. Procedures, drugs, and protocols are tested using scientific methods that are published and reviewed by peers and regulating organizations. When science-based breakthroughs are discovered, they are broadcast very quickly throughout the practitioner community.Read about Steve Jobs—one of the smartest technologists and businessmen the world has ever known—who delayed his cancer treatment.
    Step 8 – Don’t try to tough it out
    I am a retired soldier and believed I was man enough to handle almost anything. Cancer proved to be the “anything” I could not handle! I suffered a long time trying to tough it out before I admitted I was depressed. My physician’s response: “Of course you are depressed—how could you not be?” He prescribed appropriate medication, arranged consultations with a psychologist, and suggested I attend support groups. Unless you are tougher than I, you will experience depression. Admit it and accept help. Here are some other things you might try. Ask for the “freeze spray” before an IV is used. If claustrophobic, get a script for Xanax and take it shortly before scans. Even in summer, wear warm clothing to diagnostic and infusion sessions. Some areas where these take place are kept very cold. Many treatment centers have volunteers—engage one in conversation. Many are survivors or caregivers and have a wealth of helpful information. During consultations, I was so frightened I couldn’t rationally ask questions about results or next steps, and I certainly couldn’t remember what was said. Consequently, I never go alone to a consultation. I suggest if you can, always have someone with you too.
    Step 9 – Become a calendar maniac
    If you have a smartphone with a calendar application, become an expert in its use. If not, keep a paper “cancer calendar” to record information. Your life after diagnosis will likely become filled with scheduled appointments, and given the nature of the disease and intensity of the battle, these are appointments you don’t want to miss. For example, my chemotherapy cycle required an infusion every third Friday. I had to record three rounds of steroid medication taken every six hours before each infusion. I had a scheduled blood test every Monday following infusion. Nausea started Sunday morning and lasted until Tuesday. Joint pain started Wednesday and lasted until Saturday. If I took the nausea medication about an hour before onset, symptoms often were minimal. Furthermore, if I started pain medication a couple of hours before onset, my pain was manageable. I used the alarm feature on my phone to warn me in advance. Plus, there was life to live, and the calendar helped me avoid conflicts between my cancer treatment schedule and my life events schedule.
    Step 10 – Choose to live
    When asked about my cancer experience, I often tell those in treatment that cancer is a disease of life or death. I believe if you choose treatment, you are choosing life. And if you choose to live, do something with the life you are given. The “something” will be different for each of us, but doing whatever you enjoy or find fulfilling is so important. If you enjoyed an activity before diagnosis, do it afterward. Look at yourself in the mirror every morning. If you don’t see an expiration date stamped on your forehead, then enjoy the day and look forward to the next! Oh, by the way, your hair will grow back! Baldness is a beautiful badge of courage.
    Stay the course.
  21. Like
    Tom Galli got a reaction from Shercares for a blog entry, 10 Steps to Surviving Lung Cancer from a Survivor   
    MY STEPS TO SURVIVING A LUNG CANCER DIAGNOSIS
    Step 1 – Invest in sophisticated diagnosics before diagnosis
    If you smoke, were a long-term smoker, or are in an occupation that exposes you to carcinogenic toxins (asbestos removal, auto mechanic, painter, etc.), I suggest getting a computed tomography (CT) scan, often called a CAT scan, of the chest once a year. Insurance now covers it and CT will detect tumors far earlier than a chest x-ray. Early detection of small tumors dramatically enhances your survival chances. I had a chest x-ray in January 2004 and was diagnosed with stage 3b, non-small cell lung cancer the following month. The tumor hadn’t shown on the x-ray; but at diagnosis, it was almost 3 inches long and ½ inch in diameter. The only symptom I had was coughing up blood the day before diagnosis. Learn more about early CT screening.
    Step 2 – Choose a good general practitioner 
    Your general practitioner may be the manager of your lung cancer treatment. The GP likely will pick your cancer team and may need to do a little arm-twisting to get things moving. Therefore, there can be great benefits to having a GP who is seasoned and well known in the medical community. I prefer doctors of osteopathic medicine to medical doctors. I’ve found that in my experience the former treat people, not patients. I believe a good physician shows kindness, consideration, and compassion toward those in his or her care. These characteristics are essential. Be sure you know your GP and your GP knows you. Such knowledge and trust will give you a survival edge. There are great health care professionals out there.
    Step 3 – Ensure your oncologist is a physician
    A doctor has a degree in medicine and a license to practice. A physician is devoted to restoring, maintaining, and promoting your good health. My physician oncologist does a complete examination (looks in eyes, nose, and throat, checks pulse in the extremities, checks reflexes, listens to breathing and heart rate) every visit. He reviews and explains all test results and asks how I feel. He looks at me as I speak, and he listens and makes notes on what I say. He carefully explains medical treatment alternatives that may arrest the disease, and together we choose each next step. He never rushes consultations and, consequently, often is late to scheduled appointments. Because his tardiness results from spending time with those he treats, I know he cares about me and every other patient. These are some characteristics your physician oncologist should possess.
    Step 4 – Learn about your disease
    At diagnosis, I had no idea what lung cancer was. Moreover, I didn’t know what an oncologist did, nor could I spell the word! After diagnosis, I read everything I could find about the disease; a good resource is the www.LUNGevity.org website. Then I read medical journals, government reports, research papers, and studies. I made notes about things I didn’t understand and asked questions at my oncology consultations. My wife attended every consultation, procedure, and test to ensure every question was asked and answered, and that we understood the answers. You need to know about type, stage, statistics, radiation, diagnostics, chemotherapy, side effects, surgical options, and so much more. Your chances of survival are improved if you are informed enough to ask highly perceptive questions.
    Step 5 – Acquire a sanguine attitude quickly
    Cancer is a disease of death; lung cancer kills more than all other cancers. Your attitude toward treatment is, I believe, essential to survival. When you acquire a sanguine attitude, your treatment team will notice your optimism. They will enjoy interacting with you; they will care about you. I strongly suggest you read Stephen Jay Gould’s essay “The Median Isn’t the Message” to help you understand survival statistics and find optimism about what appear to be bleak probability of survival projections. Join a cancer blog or messageboard. I am a member of several where I can broadcast my complaints and protestations to people who understand and have useful advice for coping. Find cancer support groups and join one. Most people who treat you have no idea how you are feeling. But survivors in cancer support groups understand; they know how you feel—you’ll fit right in!
    Step 6 – Any port in a storm
    There is no such thing as “a little stick!” During procedures and treatment, almost everyone will attempt to gain access to your veins with an intravenous device of some type. All such intrusions are uncomfortable, and unless the practitioner is good and lucky he or she will miss more often than not. If your treatment involves intravenously administered chemotherapy, you likely will get stuck at least once a week. A good way to avoid discomfort and frustration is to ask for a port. Installation involves simple, low-risk surgery. Once in place, you need to keep the area clean and exercise precautions when bathing—but access to your veins is no longer a storm but a port in a storm!
    Step 7 – Don’t believe the miracle cure
    The consequences of a lung cancer diagnosis are frightening. For most, it will be your first serious encounter with the prospect of death. When you type “lung cancer” into Google, you will be bombarded by advertisement that promises miracle cure at considerable expense. There is no such thing as a miracle cure! Before you invest time (now precious) investigating one of these “too good to be true” remedies, check it out on www.quackwatch.org and discuss it with your physician. Oncology is a medical science. Procedures, drugs, and protocols are tested using scientific methods that are published and reviewed by peers and regulating organizations. When science-based breakthroughs are discovered, they are broadcast very quickly throughout the practitioner community.Read about Steve Jobs—one of the smartest technologists and businessmen the world has ever known—who delayed his cancer treatment.
    Step 8 – Don’t try to tough it out
    I am a retired soldier and believed I was man enough to handle almost anything. Cancer proved to be the “anything” I could not handle! I suffered a long time trying to tough it out before I admitted I was depressed. My physician’s response: “Of course you are depressed—how could you not be?” He prescribed appropriate medication, arranged consultations with a psychologist, and suggested I attend support groups. Unless you are tougher than I, you will experience depression. Admit it and accept help. Here are some other things you might try. Ask for the “freeze spray” before an IV is used. If claustrophobic, get a script for Xanax and take it shortly before scans. Even in summer, wear warm clothing to diagnostic and infusion sessions. Some areas where these take place are kept very cold. Many treatment centers have volunteers—engage one in conversation. Many are survivors or caregivers and have a wealth of helpful information. During consultations, I was so frightened I couldn’t rationally ask questions about results or next steps, and I certainly couldn’t remember what was said. Consequently, I never go alone to a consultation. I suggest if you can, always have someone with you too.
    Step 9 – Become a calendar maniac
    If you have a smartphone with a calendar application, become an expert in its use. If not, keep a paper “cancer calendar” to record information. Your life after diagnosis will likely become filled with scheduled appointments, and given the nature of the disease and intensity of the battle, these are appointments you don’t want to miss. For example, my chemotherapy cycle required an infusion every third Friday. I had to record three rounds of steroid medication taken every six hours before each infusion. I had a scheduled blood test every Monday following infusion. Nausea started Sunday morning and lasted until Tuesday. Joint pain started Wednesday and lasted until Saturday. If I took the nausea medication about an hour before onset, symptoms often were minimal. Furthermore, if I started pain medication a couple of hours before onset, my pain was manageable. I used the alarm feature on my phone to warn me in advance. Plus, there was life to live, and the calendar helped me avoid conflicts between my cancer treatment schedule and my life events schedule.
    Step 10 – Choose to live
    When asked about my cancer experience, I often tell those in treatment that cancer is a disease of life or death. I believe if you choose treatment, you are choosing life. And if you choose to live, do something with the life you are given. The “something” will be different for each of us, but doing whatever you enjoy or find fulfilling is so important. If you enjoyed an activity before diagnosis, do it afterward. Look at yourself in the mirror every morning. If you don’t see an expiration date stamped on your forehead, then enjoy the day and look forward to the next! Oh, by the way, your hair will grow back! Baldness is a beautiful badge of courage.
    Stay the course.
  22. Like
    Tom Galli got a reaction from Laurel77 for a blog entry, 10 Steps to Surviving Lung Cancer from a Survivor   
    MY STEPS TO SURVIVING A LUNG CANCER DIAGNOSIS
    Step 1 – Invest in sophisticated diagnosics before diagnosis
    If you smoke, were a long-term smoker, or are in an occupation that exposes you to carcinogenic toxins (asbestos removal, auto mechanic, painter, etc.), I suggest getting a computed tomography (CT) scan, often called a CAT scan, of the chest once a year. Insurance now covers it and CT will detect tumors far earlier than a chest x-ray. Early detection of small tumors dramatically enhances your survival chances. I had a chest x-ray in January 2004 and was diagnosed with stage 3b, non-small cell lung cancer the following month. The tumor hadn’t shown on the x-ray; but at diagnosis, it was almost 3 inches long and ½ inch in diameter. The only symptom I had was coughing up blood the day before diagnosis. Learn more about early CT screening.
    Step 2 – Choose a good general practitioner 
    Your general practitioner may be the manager of your lung cancer treatment. The GP likely will pick your cancer team and may need to do a little arm-twisting to get things moving. Therefore, there can be great benefits to having a GP who is seasoned and well known in the medical community. I prefer doctors of osteopathic medicine to medical doctors. I’ve found that in my experience the former treat people, not patients. I believe a good physician shows kindness, consideration, and compassion toward those in his or her care. These characteristics are essential. Be sure you know your GP and your GP knows you. Such knowledge and trust will give you a survival edge. There are great health care professionals out there.
    Step 3 – Ensure your oncologist is a physician
    A doctor has a degree in medicine and a license to practice. A physician is devoted to restoring, maintaining, and promoting your good health. My physician oncologist does a complete examination (looks in eyes, nose, and throat, checks pulse in the extremities, checks reflexes, listens to breathing and heart rate) every visit. He reviews and explains all test results and asks how I feel. He looks at me as I speak, and he listens and makes notes on what I say. He carefully explains medical treatment alternatives that may arrest the disease, and together we choose each next step. He never rushes consultations and, consequently, often is late to scheduled appointments. Because his tardiness results from spending time with those he treats, I know he cares about me and every other patient. These are some characteristics your physician oncologist should possess.
    Step 4 – Learn about your disease
    At diagnosis, I had no idea what lung cancer was. Moreover, I didn’t know what an oncologist did, nor could I spell the word! After diagnosis, I read everything I could find about the disease; a good resource is the www.LUNGevity.org website. Then I read medical journals, government reports, research papers, and studies. I made notes about things I didn’t understand and asked questions at my oncology consultations. My wife attended every consultation, procedure, and test to ensure every question was asked and answered, and that we understood the answers. You need to know about type, stage, statistics, radiation, diagnostics, chemotherapy, side effects, surgical options, and so much more. Your chances of survival are improved if you are informed enough to ask highly perceptive questions.
    Step 5 – Acquire a sanguine attitude quickly
    Cancer is a disease of death; lung cancer kills more than all other cancers. Your attitude toward treatment is, I believe, essential to survival. When you acquire a sanguine attitude, your treatment team will notice your optimism. They will enjoy interacting with you; they will care about you. I strongly suggest you read Stephen Jay Gould’s essay “The Median Isn’t the Message” to help you understand survival statistics and find optimism about what appear to be bleak probability of survival projections. Join a cancer blog or messageboard. I am a member of several where I can broadcast my complaints and protestations to people who understand and have useful advice for coping. Find cancer support groups and join one. Most people who treat you have no idea how you are feeling. But survivors in cancer support groups understand; they know how you feel—you’ll fit right in!
    Step 6 – Any port in a storm
    There is no such thing as “a little stick!” During procedures and treatment, almost everyone will attempt to gain access to your veins with an intravenous device of some type. All such intrusions are uncomfortable, and unless the practitioner is good and lucky he or she will miss more often than not. If your treatment involves intravenously administered chemotherapy, you likely will get stuck at least once a week. A good way to avoid discomfort and frustration is to ask for a port. Installation involves simple, low-risk surgery. Once in place, you need to keep the area clean and exercise precautions when bathing—but access to your veins is no longer a storm but a port in a storm!
    Step 7 – Don’t believe the miracle cure
    The consequences of a lung cancer diagnosis are frightening. For most, it will be your first serious encounter with the prospect of death. When you type “lung cancer” into Google, you will be bombarded by advertisement that promises miracle cure at considerable expense. There is no such thing as a miracle cure! Before you invest time (now precious) investigating one of these “too good to be true” remedies, check it out on www.quackwatch.org and discuss it with your physician. Oncology is a medical science. Procedures, drugs, and protocols are tested using scientific methods that are published and reviewed by peers and regulating organizations. When science-based breakthroughs are discovered, they are broadcast very quickly throughout the practitioner community.Read about Steve Jobs—one of the smartest technologists and businessmen the world has ever known—who delayed his cancer treatment.
    Step 8 – Don’t try to tough it out
    I am a retired soldier and believed I was man enough to handle almost anything. Cancer proved to be the “anything” I could not handle! I suffered a long time trying to tough it out before I admitted I was depressed. My physician’s response: “Of course you are depressed—how could you not be?” He prescribed appropriate medication, arranged consultations with a psychologist, and suggested I attend support groups. Unless you are tougher than I, you will experience depression. Admit it and accept help. Here are some other things you might try. Ask for the “freeze spray” before an IV is used. If claustrophobic, get a script for Xanax and take it shortly before scans. Even in summer, wear warm clothing to diagnostic and infusion sessions. Some areas where these take place are kept very cold. Many treatment centers have volunteers—engage one in conversation. Many are survivors or caregivers and have a wealth of helpful information. During consultations, I was so frightened I couldn’t rationally ask questions about results or next steps, and I certainly couldn’t remember what was said. Consequently, I never go alone to a consultation. I suggest if you can, always have someone with you too.
    Step 9 – Become a calendar maniac
    If you have a smartphone with a calendar application, become an expert in its use. If not, keep a paper “cancer calendar” to record information. Your life after diagnosis will likely become filled with scheduled appointments, and given the nature of the disease and intensity of the battle, these are appointments you don’t want to miss. For example, my chemotherapy cycle required an infusion every third Friday. I had to record three rounds of steroid medication taken every six hours before each infusion. I had a scheduled blood test every Monday following infusion. Nausea started Sunday morning and lasted until Tuesday. Joint pain started Wednesday and lasted until Saturday. If I took the nausea medication about an hour before onset, symptoms often were minimal. Furthermore, if I started pain medication a couple of hours before onset, my pain was manageable. I used the alarm feature on my phone to warn me in advance. Plus, there was life to live, and the calendar helped me avoid conflicts between my cancer treatment schedule and my life events schedule.
    Step 10 – Choose to live
    When asked about my cancer experience, I often tell those in treatment that cancer is a disease of life or death. I believe if you choose treatment, you are choosing life. And if you choose to live, do something with the life you are given. The “something” will be different for each of us, but doing whatever you enjoy or find fulfilling is so important. If you enjoyed an activity before diagnosis, do it afterward. Look at yourself in the mirror every morning. If you don’t see an expiration date stamped on your forehead, then enjoy the day and look forward to the next! Oh, by the way, your hair will grow back! Baldness is a beautiful badge of courage.
    Stay the course.
  23. Like
    Tom Galli got a reaction from JuneK for a blog entry, Ninety Percent Mental   
    Summer has ended and baseball is in World Series mode.  I’m a long suffering Philadelphia Phillies fan — a Phanatic!  To have a lifelong fascination with a mediocre baseball club requires supreme dedication, unusual perseverance, and a strong conviction that tomorrow will be a far better day.  These attributes are prerequisites for facing a daunting lung cancer diagnosis and enduring the arduousness of treatment.
    Danny Ozark, once manager of the Phillies, took the team from perennial cellar dwellers to contenders. He explained his formula for success thusly: “Half this game is ninety percent mental!” Dismissing the missing half, the same can be said of life after lung cancer treatment.
    Presume diagnostic and treatment routines of lung cancer are largely similar; the unique and difficult challenges occur post treatment.  Adding Ozark’s missing half, coping with post treatment life challenge "is ninety percent mental.”  Individually, each will face a distinct challenge set but universally, life will be different than life before treatment. How so?
    First was a misplaced expectation to return to pre-diagnostic life. After NED, there were so many things I could no longer do. It took a while to realize I needed to carve out a new lifestyle. There is a new normal life after lung cancer, but the mental challenge is finding it. No one gives you new normal; you have to make it.
    Several side effects became chronic conditions. Coping becomes a mental challenge. Everyday, I play a round of mind over matter. Most days my mind wins but I have to live with losing days.  Too many in a row and I need help.  Fortunately, my wife is a godsend. Plan to have someone trusted close by.  
    I’ve learned to go well out of my way to avoid confrontation. There are no “civil” discussion these days.  There is disagreement, branding, insult and anger.  My spin cycle goes one step farther to pain.  If I walk away, I may have a good day.  I won’t if I don’t. I’ve learned to control how I feel about something and not caring enough to have an opinion works well indeed.
    My new normal life is both challenging and enjoyable.  Achieving that state involves application of Danny Ozark’s recipe for baseball success — new normal life “is ninety percent mental.”
    Stay the course.
  24. Sad
    Tom Galli reacted to LilyMir for a blog entry, I wish the world was a better place   
    The home phone suddenly rings startling me and causing quite a bit of alarm; we never use our land line, I don’t even remember our home phone number! My husband answers and the caller asks for me. I nervously pick up the almost archaic wired phone intrigued. Hi, the caller says, this is Astra Zeneca! My heart races and I ask, how can I help? The nice agent tells me that my Canadian province does not cover my (already approved!) targeted adjuvant therapy so far and thus I have to apply for their company’s compassionate use program. They want to see see if I am eligible.
    My heart, already racing from all the shocks of surgery and adjuvant chemo sessions, races even faster. I ask with a nervous laugh, how much is it? She says about $10K/month. Ten thousand dollars. Per month. For a pill-a-day that can save your life. My hands start shaking a bit, this flimsy stupid coil phone handle is so hard to use. The agent asks me if I have insurance. Luckily I do, through my work but I am not sure they cover this, so she gets busy taking all my info to chase up my insurance. My scientist brain immediately starts to think. Huh, even if insurances pays, if Tagrisso is actually good, and I live long, soon enough I will have to start worrying about my life maximum coverage. I tell my brain to settle down, that if I do live long, that this would be a good bridge to cross.  Let me see if I survive first.
    That night I could not sleep. I kept thinking of all those in the world who are told they cannot get their life-saving drug, or that they have to pay a horrendously large amount to stay healthy. I recoiled in horror as I remembered how my kid’s school is now refusing our request for him to remain masked in school. We want to protect him (as we did for almost 3 years now) from a terrible virus that killed many of our family members, that could cause him much short and long term harms, and that has the potential to cause his mommy who is formally designated Clinically Extremely Vulnerable untold harms, not only through infection, but also disruption of active treatment and more. The school thinks the pandemic is over and that it is time to get going with "normal life". To them and many in our increasingly ableist society, the school is telling my kid that his mommy is now expendable (to be clear, we never asked anyone to mask, just that we be given our own right to do so, and the administrators know all about my lung cancer situation).
    As the night went and my insomnia lingered, I recoiled even more remembering the news of the night before. A shameful milestone for Canada. Euthanasia is now the 6th cause of death in my country. SIXTH. There are Canadians who were approved for euthanasia for having hearing loss. Literally, hearing loss was the only listed reason for one poor soul that was put down! I weep in disbelief how of little value human life has become, and how now, as a lung cancer survivor, I am part of the underclass, the immuno-suppressed, the vulnerable, those who are told to watch out for themselves, to stay at home, to consider that life is not worth living. 
    I wish the world was a better place.
    P.S. I have yet to get confirmation of my drug coverage. It sounds the chances are high I will get the drug either through my insurance or from Astra Zeneca as they encourage our government to publicly cover the drug.
  25. Like
    Tom Galli got a reaction from LA NYC for a blog entry, Contributors to cure   
    From February 2004 to March 2021 I was a lung cancer patient. That is 17 years to reach the pinnacle outcome for our disease--cure! When I think of the people who did the heavy lifting but three rise to the top: wife Martha, oncology nurse Heather Belle, and oncologist Victor Horadam. Only these 3 were with me through every twist of my wild treatment ride. These are my contributors to cure.
    Long suffering wife is a wholly inadequate term for describing Martha's burden. I'm not an easy going guy; quite the opposite I can be intense, dictatorial, and completely convinced that my opinion is the only right one. To say that Martha tamed the raging bull is an understatement, in the extreme. Some suggest that spousal support comes with the "for better or worse" territory. But, consider Martha married me during my failed third-line treatment. Where was spousal duty at diagnosis, first, and second line? No, Martha's role cannot be explained by anything other than love. Our relationship was strained by treatment but love is unrestrained and unconditional. So are belief and conviction. Martha's strength of conviction that I would prevail was a mighty bolster against my slim odds. Her conviction saw me through long after I'd given up hope.
    Why is it that nurses seldom get the star billing for their important role in medicine? Physicians get all the glory but only diagnose and prescribe; nurses treat. In medical oncology we see our nurse every treatment. By contrast, in 18 weeks of a typical chemo cycle, we might see our physician at the midpoint and end of treatment. Nurses also answer the phone or return emails and text and portal messages telling us how to deal with a side effect or in my case to "calm my raging sea of anguish." While my oncologist retired from practice just after pronouncing me cured, Heather soldiers on, day-in and day-out, dealing with a score of patients each day in active treatment. Heather Belle and thousands like her are the bedrock component of our medical oncology system. Do we understand that? Do we appreciate it? Do we thank them? Thank you Heather!
    By virtue of modern medicine and recent advances cancer treatment, including lung cancer, is largely a "cook book" affair. Presenting with a stage and type, a physician will turn to the national standard of care for first and second-line treatments. When these fail and for many of us with lung cancer, they do; the physician needs to create a treatment strategy. The best physicians are applied scientists. They are current with science, understand theory, and use both along with insight to devise a treatment when the cook book runs dry. Insight is Victor Horadam's discriminating trait that produced my cure after 5 lines of treatment. If insight so important, how do we recognize it in our physicians? What are the indicators? What can we look for?
    Let's examine Victor's methods to understand how he acquired insight. Before seeing us, Victor spent time in his office reviewing my medical file, scan, blood work, and current treatment. He had perhaps a hundred active patients and as a general oncologist, he treated most forms of cancer. I believe, he used this period of quiet contemplation to focus on my disease.  Then at the beginning of each session was the pro forma question "how are you doing?" He listened to our answer and took notes on points we made. Then he examined me, using a stethoscope to listen to my breathing and heart. He checked my pulse at my feet. He felt lymph nodes in my neck, lower throat and arm pit. Next he consulted the latest scan or test result. He explained what the scan meant avoiding jargon. Finely, he described possible next steps explaining the benefits and risks of each. This examination process never varied during my 17 years of consultations! Process discipline, I believe, allowed Victor to form insight into what might work. Consider that insight defined is "the capacity to gain an accurate and deep intuitive understanding of a person or thing." I was the person and my lung cancer was the thing. What are physician behaviors that allowed Victor to acquire insight?
    Taking time to reacquaint, listen, examine, explain test results, and delineate possible next steps along with upside and downside of each all combined to generate insight. I believe insight comes from Victor's unique consultation process discipline. 
    This forum is a special place where people with lung cancer can share their experience. When people learn of my treatment history, they ask me how did it happen. Here is how. I have a wife who loves me and whose conviction never waned. I had an oncology nurse who had the endurance of Job, was diligent in administering treatment, and was responsive to my needs. I had an intuitive physician whose process discipline yielded time and opportunity to find a way to eliminate my lung cancer. These are my contributors to cure.
    Stay the course.
     
     

  26. Like
    Tom Galli got a reaction from Joycecotton for a blog entry, Contributors to cure   
    From February 2004 to March 2021 I was a lung cancer patient. That is 17 years to reach the pinnacle outcome for our disease--cure! When I think of the people who did the heavy lifting but three rise to the top: wife Martha, oncology nurse Heather Belle, and oncologist Victor Horadam. Only these 3 were with me through every twist of my wild treatment ride. These are my contributors to cure.
    Long suffering wife is a wholly inadequate term for describing Martha's burden. I'm not an easy going guy; quite the opposite I can be intense, dictatorial, and completely convinced that my opinion is the only right one. To say that Martha tamed the raging bull is an understatement, in the extreme. Some suggest that spousal support comes with the "for better or worse" territory. But, consider Martha married me during my failed third-line treatment. Where was spousal duty at diagnosis, first, and second line? No, Martha's role cannot be explained by anything other than love. Our relationship was strained by treatment but love is unrestrained and unconditional. So are belief and conviction. Martha's strength of conviction that I would prevail was a mighty bolster against my slim odds. Her conviction saw me through long after I'd given up hope.
    Why is it that nurses seldom get the star billing for their important role in medicine? Physicians get all the glory but only diagnose and prescribe; nurses treat. In medical oncology we see our nurse every treatment. By contrast, in 18 weeks of a typical chemo cycle, we might see our physician at the midpoint and end of treatment. Nurses also answer the phone or return emails and text and portal messages telling us how to deal with a side effect or in my case to "calm my raging sea of anguish." While my oncologist retired from practice just after pronouncing me cured, Heather soldiers on, day-in and day-out, dealing with a score of patients each day in active treatment. Heather Belle and thousands like her are the bedrock component of our medical oncology system. Do we understand that? Do we appreciate it? Do we thank them? Thank you Heather!
    By virtue of modern medicine and recent advances cancer treatment, including lung cancer, is largely a "cook book" affair. Presenting with a stage and type, a physician will turn to the national standard of care for first and second-line treatments. When these fail and for many of us with lung cancer, they do; the physician needs to create a treatment strategy. The best physicians are applied scientists. They are current with science, understand theory, and use both along with insight to devise a treatment when the cook book runs dry. Insight is Victor Horadam's discriminating trait that produced my cure after 5 lines of treatment. If insight so important, how do we recognize it in our physicians? What are the indicators? What can we look for?
    Let's examine Victor's methods to understand how he acquired insight. Before seeing us, Victor spent time in his office reviewing my medical file, scan, blood work, and current treatment. He had perhaps a hundred active patients and as a general oncologist, he treated most forms of cancer. I believe, he used this period of quiet contemplation to focus on my disease.  Then at the beginning of each session was the pro forma question "how are you doing?" He listened to our answer and took notes on points we made. Then he examined me, using a stethoscope to listen to my breathing and heart. He checked my pulse at my feet. He felt lymph nodes in my neck, lower throat and arm pit. Next he consulted the latest scan or test result. He explained what the scan meant avoiding jargon. Finely, he described possible next steps explaining the benefits and risks of each. This examination process never varied during my 17 years of consultations! Process discipline, I believe, allowed Victor to form insight into what might work. Consider that insight defined is "the capacity to gain an accurate and deep intuitive understanding of a person or thing." I was the person and my lung cancer was the thing. What are physician behaviors that allowed Victor to acquire insight?
    Taking time to reacquaint, listen, examine, explain test results, and delineate possible next steps along with upside and downside of each all combined to generate insight. I believe insight comes from Victor's unique consultation process discipline. 
    This forum is a special place where people with lung cancer can share their experience. When people learn of my treatment history, they ask me how did it happen. Here is how. I have a wife who loves me and whose conviction never waned. I had an oncology nurse who had the endurance of Job, was diligent in administering treatment, and was responsive to my needs. I had an intuitive physician whose process discipline yielded time and opportunity to find a way to eliminate my lung cancer. These are my contributors to cure.
    Stay the course.
     
     

  27. Like
    Tom Galli got a reaction from BridgetO for a blog entry, Contributors to cure   
    From February 2004 to March 2021 I was a lung cancer patient. That is 17 years to reach the pinnacle outcome for our disease--cure! When I think of the people who did the heavy lifting but three rise to the top: wife Martha, oncology nurse Heather Belle, and oncologist Victor Horadam. Only these 3 were with me through every twist of my wild treatment ride. These are my contributors to cure.
    Long suffering wife is a wholly inadequate term for describing Martha's burden. I'm not an easy going guy; quite the opposite I can be intense, dictatorial, and completely convinced that my opinion is the only right one. To say that Martha tamed the raging bull is an understatement, in the extreme. Some suggest that spousal support comes with the "for better or worse" territory. But, consider Martha married me during my failed third-line treatment. Where was spousal duty at diagnosis, first, and second line? No, Martha's role cannot be explained by anything other than love. Our relationship was strained by treatment but love is unrestrained and unconditional. So are belief and conviction. Martha's strength of conviction that I would prevail was a mighty bolster against my slim odds. Her conviction saw me through long after I'd given up hope.
    Why is it that nurses seldom get the star billing for their important role in medicine? Physicians get all the glory but only diagnose and prescribe; nurses treat. In medical oncology we see our nurse every treatment. By contrast, in 18 weeks of a typical chemo cycle, we might see our physician at the midpoint and end of treatment. Nurses also answer the phone or return emails and text and portal messages telling us how to deal with a side effect or in my case to "calm my raging sea of anguish." While my oncologist retired from practice just after pronouncing me cured, Heather soldiers on, day-in and day-out, dealing with a score of patients each day in active treatment. Heather Belle and thousands like her are the bedrock component of our medical oncology system. Do we understand that? Do we appreciate it? Do we thank them? Thank you Heather!
    By virtue of modern medicine and recent advances cancer treatment, including lung cancer, is largely a "cook book" affair. Presenting with a stage and type, a physician will turn to the national standard of care for first and second-line treatments. When these fail and for many of us with lung cancer, they do; the physician needs to create a treatment strategy. The best physicians are applied scientists. They are current with science, understand theory, and use both along with insight to devise a treatment when the cook book runs dry. Insight is Victor Horadam's discriminating trait that produced my cure after 5 lines of treatment. If insight so important, how do we recognize it in our physicians? What are the indicators? What can we look for?
    Let's examine Victor's methods to understand how he acquired insight. Before seeing us, Victor spent time in his office reviewing my medical file, scan, blood work, and current treatment. He had perhaps a hundred active patients and as a general oncologist, he treated most forms of cancer. I believe, he used this period of quiet contemplation to focus on my disease.  Then at the beginning of each session was the pro forma question "how are you doing?" He listened to our answer and took notes on points we made. Then he examined me, using a stethoscope to listen to my breathing and heart. He checked my pulse at my feet. He felt lymph nodes in my neck, lower throat and arm pit. Next he consulted the latest scan or test result. He explained what the scan meant avoiding jargon. Finely, he described possible next steps explaining the benefits and risks of each. This examination process never varied during my 17 years of consultations! Process discipline, I believe, allowed Victor to form insight into what might work. Consider that insight defined is "the capacity to gain an accurate and deep intuitive understanding of a person or thing." I was the person and my lung cancer was the thing. What are physician behaviors that allowed Victor to acquire insight?
    Taking time to reacquaint, listen, examine, explain test results, and delineate possible next steps along with upside and downside of each all combined to generate insight. I believe insight comes from Victor's unique consultation process discipline. 
    This forum is a special place where people with lung cancer can share their experience. When people learn of my treatment history, they ask me how did it happen. Here is how. I have a wife who loves me and whose conviction never waned. I had an oncology nurse who had the endurance of Job, was diligent in administering treatment, and was responsive to my needs. I had an intuitive physician whose process discipline yielded time and opportunity to find a way to eliminate my lung cancer. These are my contributors to cure.
    Stay the course.
     
     

  28. Like
    Tom Galli got a reaction from AleHondaa for a blog entry, Hope Is A Good Thing   
    Red, in white shirt and loose thin-black tie and sweating in Maine’s summer heat, is leaning on a rock-wall fence.  He’s just opened Andy’s letter found under the black obsidian rock.  In the background we hear Andy reading his evocative description of hope: “Remember Red, hope is a good thing, maybe the best of things and no good thing ever dies.” The movie Shawshank Redemption is a powerful story about hope and life with a message that should resonate with every lung cancer survivor.
    I watched the movie the other day and made the connection.  Andy was imprisoned for two life sentences with no possibility of parole.  He was wrongly convicted of murder and throughout the story of his day-to-day life in prison, everyone tells him “hope is a dangerous thing.”  On escaping, Andy proclaims that hope is “maybe the best of things.”  The movie story line is exactly parallel to the plight of the late-stage diagnosed lung cancer patient ⎯- an unforgiving disease with hope as the most effective means of avoiding consequences.
    For lung cancer, hope is not a medical remedy.  While new lung cancer treatments are emerging more frequently now, basic research funding to diagnose and treat lung cancer lags other cancers.  Perhaps the pace may pick up, one hopes.  Perhaps a treatment may emerge just in time to save a life, one hopes.  Perhaps a miracle remission occurs, one hopes.  Hope may not be a medical remedy but, for many of us, it is our only effective medicament.  And, in my case, hope is “maybe the best of things.” 
    Recall the story line of Shawshank.  Andy’s future is confinement in a mind numbing institution, but he makes a choice to live in a different reality and works diligently, every day, on a novel escape plan. He makes a conscious decision to live.  He embraces the hope of escape against all odds.  Andy’s poignant characterization about life reveals his reasoning: “I guess it comes down to a simple choice, really.  Get busy living or get busy dying.”  Exactly!
    Sometimes in the heat of lung cancer treatment, we forget its purpose ⎯- extended life.  No one knows how long but life for most is extended. So what do we do with the extension?  Re-read Andy’s characterization.
    We long for a period of life extending into satisfying old age.  But most without lung cancer do not dwell on the amount remaining on account.  Lung cancer patients take careful measure of the balance.  But, measure for what end?  I believe, if one chooses treatment, then one chooses life.  Rather than dwell on the remaining balance, focus on doing something you enjoy everyday.  I suggest a survivor forget the past, declare the future irrelevant, and live in the day.
    “Get busy living or get busy dying.”
    Stay the course.
  29. Sad
    Tom Galli got a reaction from SamGirl50 for a blog entry, LexieCat, Esquire Rests Her Case   
    LexieCat joined us on June 29, 2017 after taking advantage of low-dose CT screening for folks at risk for lung cancer. That test revealed a small highly suspicious single nodule that was surgically removed. She had a successful lobectomy; we all hoped she was one and done.
    Lexie, a screen name for Teri Garvey, was a district attorney in Camden, NJ. In my younger years, Camden, across the Delaware River from Philly, where I lived, was an industrious town bustling with shipbuilding, soup making (the Campbells Soup Company), distilling, and iron working. The deindustrialization of America hit Camden hard and when the jobs left, crime moved in. Camden, now a hard-edged town, made enforcing the law a dangerous occupation. But Teri was a tough lady, fearless, courageous, and dedicated to justice.
    We met in person during the 2018 LUNGevity Summit. She a lawyer, master of words and ideals, and I the engineer, entrenched in physics and things, discovered a fond friendship. Summits are our “shining city upon a hill”. Surviving lung cancer is a mighty forcing function. Our bond of survival transcends differences.
    Teri became a bastion of support for our forum. A witty quip-master, her parody of new drug names was quintessential Garvey—“…it makes me think of Buzz Lightyear: “To Imfinzi and beyond.” On starting combination chemo with immunotherapy, she offered: “My motto, walk softly and carry a big drug.” After a clean scan report a member, knowing of her broken collar bone, suggested she not do a happy dance. Teri responded: “Sadly, you know me all too well. [My] Childhood nickname—‘Princess Grace.’”
    Nearly 3 years after surgery, a scan showed tumors in her lung and sacrum. Her second-line treatment in September 2020 was combination chemo (carboplatin, Altima and Keytruda). Scans in April 2021 showed progression. She decided to join the arduous and risky Ivoance Tumor Infiltrating Lymphocytes (TIL) trial which ended early for her after 5 of 6 scheduled infusions. A good news scan was joyfully celebrated in July but by October, cancer cells were found while draining a pericardial effusion. Her defenses down from the TIL trial, Teri struggled to return to good health. She experienced a series of exhausting hospitalizations from October though the New Year that sapped her energy but not her fortitude. Cancer was beating her body not her spirit. In a private message, she sent me this photo with the quip: “I finally love my hair!” Teri chose hospice care on February 19, 2022. She passed surrounded by loved ones on February 25th.
    Teri was one of those very special people I’ve met on my life’s journey. Like so many, her diagnosis was a surprise. Her attitude after diagnosis is one to emulate. Teri told me lung cancer would not change her. She lived every minute of every day caring for people, seeking justice for victims, and helping the unfortunate. She told me she chose the risky TIL trial because it might help someone down the road. It might indeed.
    Stay the course.

  30. Like
    Tom Galli got a reaction from LilyMir for a blog entry, Uncertain Treatment Outcomes: A Baseball Model   
    Baseball is a game that requires patient players and fans. Like lung cancer treatment, there is a lot of waiting for something to happen. Also like lung cancer, the game is unpredictable. A single pitch can change the outcome of a game like a single cell can change the outcome of treatment. And like lung cancer, baseball has many uncertainties and these are defined by odds. The best hitters succeed a little better than one in three times; the best teams winning about six in ten games. Baseball players need to persevere against low odds of success to achieve victory. So do lung cancer patients.
    A lung cancer diagnosis is devastating. Recurrence after treatment is common and traumatizing. We ought to prepare for the distress of recurrence. Treatment, even for those diagnosed at early stage, is not likely to be a walk-off home run. I was not prepared for treatment failure. How common is recurrence?
    A National Cancer Institute study suggests about 33 percent of stage IA and IB patients experience a reoccurrence. Up to 66 percent of stage IIA, IIB, or IIIA experience a reoccurrence. Interestingly, these percentages are virtually identical for both adenocarcinoma and squamous cell lung cancers. What about stage IIIB or IV disease? The study reports recurrence about half that of lower stages but suggests this is due to competing risk of mortality.
    Including surgery, my treatment success average was a dismal 1 for 5. That translates to a baseball batting average of .200, yielding a quick trip to the minor leagues. I had four recurrences after no evidence of disease (NED) treatments. We didn’t know perseverance was a requirement and we were not prepared.
    How should we prepare? Here is what I didn’t do. Have a frank conversation with my oncologist seeking information on recurrence likelihood. Share this information with my family to ensure they were prepared for bad news. Finally, celebrate my NED state by fully engaging in life. NED is that extra life treatment buys and we did not take maximum advantage of it. 
    A sidebar benefit of surviving is accumulating lessons learned. I now completely understand that lung cancer is a persistent malady that is difficult to eradicate with unpredictable treatment outcomes. Like the best baseball players, we need to take our turn at each new treatment with a fresh perspective, forgetting our last experience and striving only to put the ball in play and arrest our disease. 
    Stay the course.
  31. Like
    Tom Galli got a reaction from Shari C for a blog entry, 10 Steps to Surviving Lung Cancer from a Survivor   
    MY STEPS TO SURVIVING A LUNG CANCER DIAGNOSIS
    Step 1 – Invest in sophisticated diagnosics before diagnosis
    If you smoke, were a long-term smoker, or are in an occupation that exposes you to carcinogenic toxins (asbestos removal, auto mechanic, painter, etc.), I suggest getting a computed tomography (CT) scan, often called a CAT scan, of the chest once a year. Insurance now covers it and CT will detect tumors far earlier than a chest x-ray. Early detection of small tumors dramatically enhances your survival chances. I had a chest x-ray in January 2004 and was diagnosed with stage 3b, non-small cell lung cancer the following month. The tumor hadn’t shown on the x-ray; but at diagnosis, it was almost 3 inches long and ½ inch in diameter. The only symptom I had was coughing up blood the day before diagnosis. Learn more about early CT screening.
    Step 2 – Choose a good general practitioner 
    Your general practitioner may be the manager of your lung cancer treatment. The GP likely will pick your cancer team and may need to do a little arm-twisting to get things moving. Therefore, there can be great benefits to having a GP who is seasoned and well known in the medical community. I prefer doctors of osteopathic medicine to medical doctors. I’ve found that in my experience the former treat people, not patients. I believe a good physician shows kindness, consideration, and compassion toward those in his or her care. These characteristics are essential. Be sure you know your GP and your GP knows you. Such knowledge and trust will give you a survival edge. There are great health care professionals out there.
    Step 3 – Ensure your oncologist is a physician
    A doctor has a degree in medicine and a license to practice. A physician is devoted to restoring, maintaining, and promoting your good health. My physician oncologist does a complete examination (looks in eyes, nose, and throat, checks pulse in the extremities, checks reflexes, listens to breathing and heart rate) every visit. He reviews and explains all test results and asks how I feel. He looks at me as I speak, and he listens and makes notes on what I say. He carefully explains medical treatment alternatives that may arrest the disease, and together we choose each next step. He never rushes consultations and, consequently, often is late to scheduled appointments. Because his tardiness results from spending time with those he treats, I know he cares about me and every other patient. These are some characteristics your physician oncologist should possess.
    Step 4 – Learn about your disease
    At diagnosis, I had no idea what lung cancer was. Moreover, I didn’t know what an oncologist did, nor could I spell the word! After diagnosis, I read everything I could find about the disease; a good resource is the www.LUNGevity.org website. Then I read medical journals, government reports, research papers, and studies. I made notes about things I didn’t understand and asked questions at my oncology consultations. My wife attended every consultation, procedure, and test to ensure every question was asked and answered, and that we understood the answers. You need to know about type, stage, statistics, radiation, diagnostics, chemotherapy, side effects, surgical options, and so much more. Your chances of survival are improved if you are informed enough to ask highly perceptive questions.
    Step 5 – Acquire a sanguine attitude quickly
    Cancer is a disease of death; lung cancer kills more than all other cancers. Your attitude toward treatment is, I believe, essential to survival. When you acquire a sanguine attitude, your treatment team will notice your optimism. They will enjoy interacting with you; they will care about you. I strongly suggest you read Stephen Jay Gould’s essay “The Median Isn’t the Message” to help you understand survival statistics and find optimism about what appear to be bleak probability of survival projections. Join a cancer blog or messageboard. I am a member of several where I can broadcast my complaints and protestations to people who understand and have useful advice for coping. Find cancer support groups and join one. Most people who treat you have no idea how you are feeling. But survivors in cancer support groups understand; they know how you feel—you’ll fit right in!
    Step 6 – Any port in a storm
    There is no such thing as “a little stick!” During procedures and treatment, almost everyone will attempt to gain access to your veins with an intravenous device of some type. All such intrusions are uncomfortable, and unless the practitioner is good and lucky he or she will miss more often than not. If your treatment involves intravenously administered chemotherapy, you likely will get stuck at least once a week. A good way to avoid discomfort and frustration is to ask for a port. Installation involves simple, low-risk surgery. Once in place, you need to keep the area clean and exercise precautions when bathing—but access to your veins is no longer a storm but a port in a storm!
    Step 7 – Don’t believe the miracle cure
    The consequences of a lung cancer diagnosis are frightening. For most, it will be your first serious encounter with the prospect of death. When you type “lung cancer” into Google, you will be bombarded by advertisement that promises miracle cure at considerable expense. There is no such thing as a miracle cure! Before you invest time (now precious) investigating one of these “too good to be true” remedies, check it out on www.quackwatch.org and discuss it with your physician. Oncology is a medical science. Procedures, drugs, and protocols are tested using scientific methods that are published and reviewed by peers and regulating organizations. When science-based breakthroughs are discovered, they are broadcast very quickly throughout the practitioner community.Read about Steve Jobs—one of the smartest technologists and businessmen the world has ever known—who delayed his cancer treatment.
    Step 8 – Don’t try to tough it out
    I am a retired soldier and believed I was man enough to handle almost anything. Cancer proved to be the “anything” I could not handle! I suffered a long time trying to tough it out before I admitted I was depressed. My physician’s response: “Of course you are depressed—how could you not be?” He prescribed appropriate medication, arranged consultations with a psychologist, and suggested I attend support groups. Unless you are tougher than I, you will experience depression. Admit it and accept help. Here are some other things you might try. Ask for the “freeze spray” before an IV is used. If claustrophobic, get a script for Xanax and take it shortly before scans. Even in summer, wear warm clothing to diagnostic and infusion sessions. Some areas where these take place are kept very cold. Many treatment centers have volunteers—engage one in conversation. Many are survivors or caregivers and have a wealth of helpful information. During consultations, I was so frightened I couldn’t rationally ask questions about results or next steps, and I certainly couldn’t remember what was said. Consequently, I never go alone to a consultation. I suggest if you can, always have someone with you too.
    Step 9 – Become a calendar maniac
    If you have a smartphone with a calendar application, become an expert in its use. If not, keep a paper “cancer calendar” to record information. Your life after diagnosis will likely become filled with scheduled appointments, and given the nature of the disease and intensity of the battle, these are appointments you don’t want to miss. For example, my chemotherapy cycle required an infusion every third Friday. I had to record three rounds of steroid medication taken every six hours before each infusion. I had a scheduled blood test every Monday following infusion. Nausea started Sunday morning and lasted until Tuesday. Joint pain started Wednesday and lasted until Saturday. If I took the nausea medication about an hour before onset, symptoms often were minimal. Furthermore, if I started pain medication a couple of hours before onset, my pain was manageable. I used the alarm feature on my phone to warn me in advance. Plus, there was life to live, and the calendar helped me avoid conflicts between my cancer treatment schedule and my life events schedule.
    Step 10 – Choose to live
    When asked about my cancer experience, I often tell those in treatment that cancer is a disease of life or death. I believe if you choose treatment, you are choosing life. And if you choose to live, do something with the life you are given. The “something” will be different for each of us, but doing whatever you enjoy or find fulfilling is so important. If you enjoyed an activity before diagnosis, do it afterward. Look at yourself in the mirror every morning. If you don’t see an expiration date stamped on your forehead, then enjoy the day and look forward to the next! Oh, by the way, your hair will grow back! Baldness is a beautiful badge of courage.
    Stay the course.
  32. Sad
    Tom Galli got a reaction from Curt for a blog entry, LexieCat, Esquire Rests Her Case   
    LexieCat joined us on June 29, 2017 after taking advantage of low-dose CT screening for folks at risk for lung cancer. That test revealed a small highly suspicious single nodule that was surgically removed. She had a successful lobectomy; we all hoped she was one and done.
    Lexie, a screen name for Teri Garvey, was a district attorney in Camden, NJ. In my younger years, Camden, across the Delaware River from Philly, where I lived, was an industrious town bustling with shipbuilding, soup making (the Campbells Soup Company), distilling, and iron working. The deindustrialization of America hit Camden hard and when the jobs left, crime moved in. Camden, now a hard-edged town, made enforcing the law a dangerous occupation. But Teri was a tough lady, fearless, courageous, and dedicated to justice.
    We met in person during the 2018 LUNGevity Summit. She a lawyer, master of words and ideals, and I the engineer, entrenched in physics and things, discovered a fond friendship. Summits are our “shining city upon a hill”. Surviving lung cancer is a mighty forcing function. Our bond of survival transcends differences.
    Teri became a bastion of support for our forum. A witty quip-master, her parody of new drug names was quintessential Garvey—“…it makes me think of Buzz Lightyear: “To Imfinzi and beyond.” On starting combination chemo with immunotherapy, she offered: “My motto, walk softly and carry a big drug.” After a clean scan report a member, knowing of her broken collar bone, suggested she not do a happy dance. Teri responded: “Sadly, you know me all too well. [My] Childhood nickname—‘Princess Grace.’”
    Nearly 3 years after surgery, a scan showed tumors in her lung and sacrum. Her second-line treatment in September 2020 was combination chemo (carboplatin, Altima and Keytruda). Scans in April 2021 showed progression. She decided to join the arduous and risky Ivoance Tumor Infiltrating Lymphocytes (TIL) trial which ended early for her after 5 of 6 scheduled infusions. A good news scan was joyfully celebrated in July but by October, cancer cells were found while draining a pericardial effusion. Her defenses down from the TIL trial, Teri struggled to return to good health. She experienced a series of exhausting hospitalizations from October though the New Year that sapped her energy but not her fortitude. Cancer was beating her body not her spirit. In a private message, she sent me this photo with the quip: “I finally love my hair!” Teri chose hospice care on February 19, 2022. She passed surrounded by loved ones on February 25th.
    Teri was one of those very special people I’ve met on my life’s journey. Like so many, her diagnosis was a surprise. Her attitude after diagnosis is one to emulate. Teri told me lung cancer would not change her. She lived every minute of every day caring for people, seeking justice for victims, and helping the unfortunate. She told me she chose the risky TIL trial because it might help someone down the road. It might indeed.
    Stay the course.

  33. Like
    Tom Galli got a reaction from CH29 for a blog entry, LexieCat, Esquire Rests Her Case   
    LexieCat joined us on June 29, 2017 after taking advantage of low-dose CT screening for folks at risk for lung cancer. That test revealed a small highly suspicious single nodule that was surgically removed. She had a successful lobectomy; we all hoped she was one and done.
    Lexie, a screen name for Teri Garvey, was a district attorney in Camden, NJ. In my younger years, Camden, across the Delaware River from Philly, where I lived, was an industrious town bustling with shipbuilding, soup making (the Campbells Soup Company), distilling, and iron working. The deindustrialization of America hit Camden hard and when the jobs left, crime moved in. Camden, now a hard-edged town, made enforcing the law a dangerous occupation. But Teri was a tough lady, fearless, courageous, and dedicated to justice.
    We met in person during the 2018 LUNGevity Summit. She a lawyer, master of words and ideals, and I the engineer, entrenched in physics and things, discovered a fond friendship. Summits are our “shining city upon a hill”. Surviving lung cancer is a mighty forcing function. Our bond of survival transcends differences.
    Teri became a bastion of support for our forum. A witty quip-master, her parody of new drug names was quintessential Garvey—“…it makes me think of Buzz Lightyear: “To Imfinzi and beyond.” On starting combination chemo with immunotherapy, she offered: “My motto, walk softly and carry a big drug.” After a clean scan report a member, knowing of her broken collar bone, suggested she not do a happy dance. Teri responded: “Sadly, you know me all too well. [My] Childhood nickname—‘Princess Grace.’”
    Nearly 3 years after surgery, a scan showed tumors in her lung and sacrum. Her second-line treatment in September 2020 was combination chemo (carboplatin, Altima and Keytruda). Scans in April 2021 showed progression. She decided to join the arduous and risky Ivoance Tumor Infiltrating Lymphocytes (TIL) trial which ended early for her after 5 of 6 scheduled infusions. A good news scan was joyfully celebrated in July but by October, cancer cells were found while draining a pericardial effusion. Her defenses down from the TIL trial, Teri struggled to return to good health. She experienced a series of exhausting hospitalizations from October though the New Year that sapped her energy but not her fortitude. Cancer was beating her body not her spirit. In a private message, she sent me this photo with the quip: “I finally love my hair!” Teri chose hospice care on February 19, 2022. She passed surrounded by loved ones on February 25th.
    Teri was one of those very special people I’ve met on my life’s journey. Like so many, her diagnosis was a surprise. Her attitude after diagnosis is one to emulate. Teri told me lung cancer would not change her. She lived every minute of every day caring for people, seeking justice for victims, and helping the unfortunate. She told me she chose the risky TIL trial because it might help someone down the road. It might indeed.
    Stay the course.

  34. Like
    Tom Galli got a reaction from Marilyn Raven for a blog entry, LexieCat, Esquire Rests Her Case   
    LexieCat joined us on June 29, 2017 after taking advantage of low-dose CT screening for folks at risk for lung cancer. That test revealed a small highly suspicious single nodule that was surgically removed. She had a successful lobectomy; we all hoped she was one and done.
    Lexie, a screen name for Teri Garvey, was a district attorney in Camden, NJ. In my younger years, Camden, across the Delaware River from Philly, where I lived, was an industrious town bustling with shipbuilding, soup making (the Campbells Soup Company), distilling, and iron working. The deindustrialization of America hit Camden hard and when the jobs left, crime moved in. Camden, now a hard-edged town, made enforcing the law a dangerous occupation. But Teri was a tough lady, fearless, courageous, and dedicated to justice.
    We met in person during the 2018 LUNGevity Summit. She a lawyer, master of words and ideals, and I the engineer, entrenched in physics and things, discovered a fond friendship. Summits are our “shining city upon a hill”. Surviving lung cancer is a mighty forcing function. Our bond of survival transcends differences.
    Teri became a bastion of support for our forum. A witty quip-master, her parody of new drug names was quintessential Garvey—“…it makes me think of Buzz Lightyear: “To Imfinzi and beyond.” On starting combination chemo with immunotherapy, she offered: “My motto, walk softly and carry a big drug.” After a clean scan report a member, knowing of her broken collar bone, suggested she not do a happy dance. Teri responded: “Sadly, you know me all too well. [My] Childhood nickname—‘Princess Grace.’”
    Nearly 3 years after surgery, a scan showed tumors in her lung and sacrum. Her second-line treatment in September 2020 was combination chemo (carboplatin, Altima and Keytruda). Scans in April 2021 showed progression. She decided to join the arduous and risky Ivoance Tumor Infiltrating Lymphocytes (TIL) trial which ended early for her after 5 of 6 scheduled infusions. A good news scan was joyfully celebrated in July but by October, cancer cells were found while draining a pericardial effusion. Her defenses down from the TIL trial, Teri struggled to return to good health. She experienced a series of exhausting hospitalizations from October though the New Year that sapped her energy but not her fortitude. Cancer was beating her body not her spirit. In a private message, she sent me this photo with the quip: “I finally love my hair!” Teri chose hospice care on February 19, 2022. She passed surrounded by loved ones on February 25th.
    Teri was one of those very special people I’ve met on my life’s journey. Like so many, her diagnosis was a surprise. Her attitude after diagnosis is one to emulate. Teri told me lung cancer would not change her. She lived every minute of every day caring for people, seeking justice for victims, and helping the unfortunate. She told me she chose the risky TIL trial because it might help someone down the road. It might indeed.
    Stay the course.

  35. Sad
    Tom Galli got a reaction from Deb W for a blog entry, LexieCat, Esquire Rests Her Case   
    LexieCat joined us on June 29, 2017 after taking advantage of low-dose CT screening for folks at risk for lung cancer. That test revealed a small highly suspicious single nodule that was surgically removed. She had a successful lobectomy; we all hoped she was one and done.
    Lexie, a screen name for Teri Garvey, was a district attorney in Camden, NJ. In my younger years, Camden, across the Delaware River from Philly, where I lived, was an industrious town bustling with shipbuilding, soup making (the Campbells Soup Company), distilling, and iron working. The deindustrialization of America hit Camden hard and when the jobs left, crime moved in. Camden, now a hard-edged town, made enforcing the law a dangerous occupation. But Teri was a tough lady, fearless, courageous, and dedicated to justice.
    We met in person during the 2018 LUNGevity Summit. She a lawyer, master of words and ideals, and I the engineer, entrenched in physics and things, discovered a fond friendship. Summits are our “shining city upon a hill”. Surviving lung cancer is a mighty forcing function. Our bond of survival transcends differences.
    Teri became a bastion of support for our forum. A witty quip-master, her parody of new drug names was quintessential Garvey—“…it makes me think of Buzz Lightyear: “To Imfinzi and beyond.” On starting combination chemo with immunotherapy, she offered: “My motto, walk softly and carry a big drug.” After a clean scan report a member, knowing of her broken collar bone, suggested she not do a happy dance. Teri responded: “Sadly, you know me all too well. [My] Childhood nickname—‘Princess Grace.’”
    Nearly 3 years after surgery, a scan showed tumors in her lung and sacrum. Her second-line treatment in September 2020 was combination chemo (carboplatin, Altima and Keytruda). Scans in April 2021 showed progression. She decided to join the arduous and risky Ivoance Tumor Infiltrating Lymphocytes (TIL) trial which ended early for her after 5 of 6 scheduled infusions. A good news scan was joyfully celebrated in July but by October, cancer cells were found while draining a pericardial effusion. Her defenses down from the TIL trial, Teri struggled to return to good health. She experienced a series of exhausting hospitalizations from October though the New Year that sapped her energy but not her fortitude. Cancer was beating her body not her spirit. In a private message, she sent me this photo with the quip: “I finally love my hair!” Teri chose hospice care on February 19, 2022. She passed surrounded by loved ones on February 25th.
    Teri was one of those very special people I’ve met on my life’s journey. Like so many, her diagnosis was a surprise. Her attitude after diagnosis is one to emulate. Teri told me lung cancer would not change her. She lived every minute of every day caring for people, seeking justice for victims, and helping the unfortunate. She told me she chose the risky TIL trial because it might help someone down the road. It might indeed.
    Stay the course.

  36. Like
    Tom Galli got a reaction from ChiMama for a blog entry, LexieCat, Esquire Rests Her Case   
    LexieCat joined us on June 29, 2017 after taking advantage of low-dose CT screening for folks at risk for lung cancer. That test revealed a small highly suspicious single nodule that was surgically removed. She had a successful lobectomy; we all hoped she was one and done.
    Lexie, a screen name for Teri Garvey, was a district attorney in Camden, NJ. In my younger years, Camden, across the Delaware River from Philly, where I lived, was an industrious town bustling with shipbuilding, soup making (the Campbells Soup Company), distilling, and iron working. The deindustrialization of America hit Camden hard and when the jobs left, crime moved in. Camden, now a hard-edged town, made enforcing the law a dangerous occupation. But Teri was a tough lady, fearless, courageous, and dedicated to justice.
    We met in person during the 2018 LUNGevity Summit. She a lawyer, master of words and ideals, and I the engineer, entrenched in physics and things, discovered a fond friendship. Summits are our “shining city upon a hill”. Surviving lung cancer is a mighty forcing function. Our bond of survival transcends differences.
    Teri became a bastion of support for our forum. A witty quip-master, her parody of new drug names was quintessential Garvey—“…it makes me think of Buzz Lightyear: “To Imfinzi and beyond.” On starting combination chemo with immunotherapy, she offered: “My motto, walk softly and carry a big drug.” After a clean scan report a member, knowing of her broken collar bone, suggested she not do a happy dance. Teri responded: “Sadly, you know me all too well. [My] Childhood nickname—‘Princess Grace.’”
    Nearly 3 years after surgery, a scan showed tumors in her lung and sacrum. Her second-line treatment in September 2020 was combination chemo (carboplatin, Altima and Keytruda). Scans in April 2021 showed progression. She decided to join the arduous and risky Ivoance Tumor Infiltrating Lymphocytes (TIL) trial which ended early for her after 5 of 6 scheduled infusions. A good news scan was joyfully celebrated in July but by October, cancer cells were found while draining a pericardial effusion. Her defenses down from the TIL trial, Teri struggled to return to good health. She experienced a series of exhausting hospitalizations from October though the New Year that sapped her energy but not her fortitude. Cancer was beating her body not her spirit. In a private message, she sent me this photo with the quip: “I finally love my hair!” Teri chose hospice care on February 19, 2022. She passed surrounded by loved ones on February 25th.
    Teri was one of those very special people I’ve met on my life’s journey. Like so many, her diagnosis was a surprise. Her attitude after diagnosis is one to emulate. Teri told me lung cancer would not change her. She lived every minute of every day caring for people, seeking justice for victims, and helping the unfortunate. She told me she chose the risky TIL trial because it might help someone down the road. It might indeed.
    Stay the course.

  37. Like
    Tom Galli got a reaction from WalkingHorse for a blog entry, LexieCat, Esquire Rests Her Case   
    LexieCat joined us on June 29, 2017 after taking advantage of low-dose CT screening for folks at risk for lung cancer. That test revealed a small highly suspicious single nodule that was surgically removed. She had a successful lobectomy; we all hoped she was one and done.
    Lexie, a screen name for Teri Garvey, was a district attorney in Camden, NJ. In my younger years, Camden, across the Delaware River from Philly, where I lived, was an industrious town bustling with shipbuilding, soup making (the Campbells Soup Company), distilling, and iron working. The deindustrialization of America hit Camden hard and when the jobs left, crime moved in. Camden, now a hard-edged town, made enforcing the law a dangerous occupation. But Teri was a tough lady, fearless, courageous, and dedicated to justice.
    We met in person during the 2018 LUNGevity Summit. She a lawyer, master of words and ideals, and I the engineer, entrenched in physics and things, discovered a fond friendship. Summits are our “shining city upon a hill”. Surviving lung cancer is a mighty forcing function. Our bond of survival transcends differences.
    Teri became a bastion of support for our forum. A witty quip-master, her parody of new drug names was quintessential Garvey—“…it makes me think of Buzz Lightyear: “To Imfinzi and beyond.” On starting combination chemo with immunotherapy, she offered: “My motto, walk softly and carry a big drug.” After a clean scan report a member, knowing of her broken collar bone, suggested she not do a happy dance. Teri responded: “Sadly, you know me all too well. [My] Childhood nickname—‘Princess Grace.’”
    Nearly 3 years after surgery, a scan showed tumors in her lung and sacrum. Her second-line treatment in September 2020 was combination chemo (carboplatin, Altima and Keytruda). Scans in April 2021 showed progression. She decided to join the arduous and risky Ivoance Tumor Infiltrating Lymphocytes (TIL) trial which ended early for her after 5 of 6 scheduled infusions. A good news scan was joyfully celebrated in July but by October, cancer cells were found while draining a pericardial effusion. Her defenses down from the TIL trial, Teri struggled to return to good health. She experienced a series of exhausting hospitalizations from October though the New Year that sapped her energy but not her fortitude. Cancer was beating her body not her spirit. In a private message, she sent me this photo with the quip: “I finally love my hair!” Teri chose hospice care on February 19, 2022. She passed surrounded by loved ones on February 25th.
    Teri was one of those very special people I’ve met on my life’s journey. Like so many, her diagnosis was a surprise. Her attitude after diagnosis is one to emulate. Teri told me lung cancer would not change her. She lived every minute of every day caring for people, seeking justice for victims, and helping the unfortunate. She told me she chose the risky TIL trial because it might help someone down the road. It might indeed.
    Stay the course.

  38. Like
    Tom Galli got a reaction from BridgetO for a blog entry, LexieCat, Esquire Rests Her Case   
    LexieCat joined us on June 29, 2017 after taking advantage of low-dose CT screening for folks at risk for lung cancer. That test revealed a small highly suspicious single nodule that was surgically removed. She had a successful lobectomy; we all hoped she was one and done.
    Lexie, a screen name for Teri Garvey, was a district attorney in Camden, NJ. In my younger years, Camden, across the Delaware River from Philly, where I lived, was an industrious town bustling with shipbuilding, soup making (the Campbells Soup Company), distilling, and iron working. The deindustrialization of America hit Camden hard and when the jobs left, crime moved in. Camden, now a hard-edged town, made enforcing the law a dangerous occupation. But Teri was a tough lady, fearless, courageous, and dedicated to justice.
    We met in person during the 2018 LUNGevity Summit. She a lawyer, master of words and ideals, and I the engineer, entrenched in physics and things, discovered a fond friendship. Summits are our “shining city upon a hill”. Surviving lung cancer is a mighty forcing function. Our bond of survival transcends differences.
    Teri became a bastion of support for our forum. A witty quip-master, her parody of new drug names was quintessential Garvey—“…it makes me think of Buzz Lightyear: “To Imfinzi and beyond.” On starting combination chemo with immunotherapy, she offered: “My motto, walk softly and carry a big drug.” After a clean scan report a member, knowing of her broken collar bone, suggested she not do a happy dance. Teri responded: “Sadly, you know me all too well. [My] Childhood nickname—‘Princess Grace.’”
    Nearly 3 years after surgery, a scan showed tumors in her lung and sacrum. Her second-line treatment in September 2020 was combination chemo (carboplatin, Altima and Keytruda). Scans in April 2021 showed progression. She decided to join the arduous and risky Ivoance Tumor Infiltrating Lymphocytes (TIL) trial which ended early for her after 5 of 6 scheduled infusions. A good news scan was joyfully celebrated in July but by October, cancer cells were found while draining a pericardial effusion. Her defenses down from the TIL trial, Teri struggled to return to good health. She experienced a series of exhausting hospitalizations from October though the New Year that sapped her energy but not her fortitude. Cancer was beating her body not her spirit. In a private message, she sent me this photo with the quip: “I finally love my hair!” Teri chose hospice care on February 19, 2022. She passed surrounded by loved ones on February 25th.
    Teri was one of those very special people I’ve met on my life’s journey. Like so many, her diagnosis was a surprise. Her attitude after diagnosis is one to emulate. Teri told me lung cancer would not change her. She lived every minute of every day caring for people, seeking justice for victims, and helping the unfortunate. She told me she chose the risky TIL trial because it might help someone down the road. It might indeed.
    Stay the course.

  39. Sad
    Tom Galli got a reaction from Susan Cornett for a blog entry, LexieCat, Esquire Rests Her Case   
    LexieCat joined us on June 29, 2017 after taking advantage of low-dose CT screening for folks at risk for lung cancer. That test revealed a small highly suspicious single nodule that was surgically removed. She had a successful lobectomy; we all hoped she was one and done.
    Lexie, a screen name for Teri Garvey, was a district attorney in Camden, NJ. In my younger years, Camden, across the Delaware River from Philly, where I lived, was an industrious town bustling with shipbuilding, soup making (the Campbells Soup Company), distilling, and iron working. The deindustrialization of America hit Camden hard and when the jobs left, crime moved in. Camden, now a hard-edged town, made enforcing the law a dangerous occupation. But Teri was a tough lady, fearless, courageous, and dedicated to justice.
    We met in person during the 2018 LUNGevity Summit. She a lawyer, master of words and ideals, and I the engineer, entrenched in physics and things, discovered a fond friendship. Summits are our “shining city upon a hill”. Surviving lung cancer is a mighty forcing function. Our bond of survival transcends differences.
    Teri became a bastion of support for our forum. A witty quip-master, her parody of new drug names was quintessential Garvey—“…it makes me think of Buzz Lightyear: “To Imfinzi and beyond.” On starting combination chemo with immunotherapy, she offered: “My motto, walk softly and carry a big drug.” After a clean scan report a member, knowing of her broken collar bone, suggested she not do a happy dance. Teri responded: “Sadly, you know me all too well. [My] Childhood nickname—‘Princess Grace.’”
    Nearly 3 years after surgery, a scan showed tumors in her lung and sacrum. Her second-line treatment in September 2020 was combination chemo (carboplatin, Altima and Keytruda). Scans in April 2021 showed progression. She decided to join the arduous and risky Ivoance Tumor Infiltrating Lymphocytes (TIL) trial which ended early for her after 5 of 6 scheduled infusions. A good news scan was joyfully celebrated in July but by October, cancer cells were found while draining a pericardial effusion. Her defenses down from the TIL trial, Teri struggled to return to good health. She experienced a series of exhausting hospitalizations from October though the New Year that sapped her energy but not her fortitude. Cancer was beating her body not her spirit. In a private message, she sent me this photo with the quip: “I finally love my hair!” Teri chose hospice care on February 19, 2022. She passed surrounded by loved ones on February 25th.
    Teri was one of those very special people I’ve met on my life’s journey. Like so many, her diagnosis was a surprise. Her attitude after diagnosis is one to emulate. Teri told me lung cancer would not change her. She lived every minute of every day caring for people, seeking justice for victims, and helping the unfortunate. She told me she chose the risky TIL trial because it might help someone down the road. It might indeed.
    Stay the course.

  40. Like
    Tom Galli got a reaction from Izzy for a blog entry, LexieCat, Esquire Rests Her Case   
    LexieCat joined us on June 29, 2017 after taking advantage of low-dose CT screening for folks at risk for lung cancer. That test revealed a small highly suspicious single nodule that was surgically removed. She had a successful lobectomy; we all hoped she was one and done.
    Lexie, a screen name for Teri Garvey, was a district attorney in Camden, NJ. In my younger years, Camden, across the Delaware River from Philly, where I lived, was an industrious town bustling with shipbuilding, soup making (the Campbells Soup Company), distilling, and iron working. The deindustrialization of America hit Camden hard and when the jobs left, crime moved in. Camden, now a hard-edged town, made enforcing the law a dangerous occupation. But Teri was a tough lady, fearless, courageous, and dedicated to justice.
    We met in person during the 2018 LUNGevity Summit. She a lawyer, master of words and ideals, and I the engineer, entrenched in physics and things, discovered a fond friendship. Summits are our “shining city upon a hill”. Surviving lung cancer is a mighty forcing function. Our bond of survival transcends differences.
    Teri became a bastion of support for our forum. A witty quip-master, her parody of new drug names was quintessential Garvey—“…it makes me think of Buzz Lightyear: “To Imfinzi and beyond.” On starting combination chemo with immunotherapy, she offered: “My motto, walk softly and carry a big drug.” After a clean scan report a member, knowing of her broken collar bone, suggested she not do a happy dance. Teri responded: “Sadly, you know me all too well. [My] Childhood nickname—‘Princess Grace.’”
    Nearly 3 years after surgery, a scan showed tumors in her lung and sacrum. Her second-line treatment in September 2020 was combination chemo (carboplatin, Altima and Keytruda). Scans in April 2021 showed progression. She decided to join the arduous and risky Ivoance Tumor Infiltrating Lymphocytes (TIL) trial which ended early for her after 5 of 6 scheduled infusions. A good news scan was joyfully celebrated in July but by October, cancer cells were found while draining a pericardial effusion. Her defenses down from the TIL trial, Teri struggled to return to good health. She experienced a series of exhausting hospitalizations from October though the New Year that sapped her energy but not her fortitude. Cancer was beating her body not her spirit. In a private message, she sent me this photo with the quip: “I finally love my hair!” Teri chose hospice care on February 19, 2022. She passed surrounded by loved ones on February 25th.
    Teri was one of those very special people I’ve met on my life’s journey. Like so many, her diagnosis was a surprise. Her attitude after diagnosis is one to emulate. Teri told me lung cancer would not change her. She lived every minute of every day caring for people, seeking justice for victims, and helping the unfortunate. She told me she chose the risky TIL trial because it might help someone down the road. It might indeed.
    Stay the course.

  41. Like
    Tom Galli got a reaction from DMiller for a blog entry, LexieCat, Esquire Rests Her Case   
    LexieCat joined us on June 29, 2017 after taking advantage of low-dose CT screening for folks at risk for lung cancer. That test revealed a small highly suspicious single nodule that was surgically removed. She had a successful lobectomy; we all hoped she was one and done.
    Lexie, a screen name for Teri Garvey, was a district attorney in Camden, NJ. In my younger years, Camden, across the Delaware River from Philly, where I lived, was an industrious town bustling with shipbuilding, soup making (the Campbells Soup Company), distilling, and iron working. The deindustrialization of America hit Camden hard and when the jobs left, crime moved in. Camden, now a hard-edged town, made enforcing the law a dangerous occupation. But Teri was a tough lady, fearless, courageous, and dedicated to justice.
    We met in person during the 2018 LUNGevity Summit. She a lawyer, master of words and ideals, and I the engineer, entrenched in physics and things, discovered a fond friendship. Summits are our “shining city upon a hill”. Surviving lung cancer is a mighty forcing function. Our bond of survival transcends differences.
    Teri became a bastion of support for our forum. A witty quip-master, her parody of new drug names was quintessential Garvey—“…it makes me think of Buzz Lightyear: “To Imfinzi and beyond.” On starting combination chemo with immunotherapy, she offered: “My motto, walk softly and carry a big drug.” After a clean scan report a member, knowing of her broken collar bone, suggested she not do a happy dance. Teri responded: “Sadly, you know me all too well. [My] Childhood nickname—‘Princess Grace.’”
    Nearly 3 years after surgery, a scan showed tumors in her lung and sacrum. Her second-line treatment in September 2020 was combination chemo (carboplatin, Altima and Keytruda). Scans in April 2021 showed progression. She decided to join the arduous and risky Ivoance Tumor Infiltrating Lymphocytes (TIL) trial which ended early for her after 5 of 6 scheduled infusions. A good news scan was joyfully celebrated in July but by October, cancer cells were found while draining a pericardial effusion. Her defenses down from the TIL trial, Teri struggled to return to good health. She experienced a series of exhausting hospitalizations from October though the New Year that sapped her energy but not her fortitude. Cancer was beating her body not her spirit. In a private message, she sent me this photo with the quip: “I finally love my hair!” Teri chose hospice care on February 19, 2022. She passed surrounded by loved ones on February 25th.
    Teri was one of those very special people I’ve met on my life’s journey. Like so many, her diagnosis was a surprise. Her attitude after diagnosis is one to emulate. Teri told me lung cancer would not change her. She lived every minute of every day caring for people, seeking justice for victims, and helping the unfortunate. She told me she chose the risky TIL trial because it might help someone down the road. It might indeed.
    Stay the course.

  42. Like
    Tom Galli got a reaction from Babs for a blog entry, LexieCat, Esquire Rests Her Case   
    LexieCat joined us on June 29, 2017 after taking advantage of low-dose CT screening for folks at risk for lung cancer. That test revealed a small highly suspicious single nodule that was surgically removed. She had a successful lobectomy; we all hoped she was one and done.
    Lexie, a screen name for Teri Garvey, was a district attorney in Camden, NJ. In my younger years, Camden, across the Delaware River from Philly, where I lived, was an industrious town bustling with shipbuilding, soup making (the Campbells Soup Company), distilling, and iron working. The deindustrialization of America hit Camden hard and when the jobs left, crime moved in. Camden, now a hard-edged town, made enforcing the law a dangerous occupation. But Teri was a tough lady, fearless, courageous, and dedicated to justice.
    We met in person during the 2018 LUNGevity Summit. She a lawyer, master of words and ideals, and I the engineer, entrenched in physics and things, discovered a fond friendship. Summits are our “shining city upon a hill”. Surviving lung cancer is a mighty forcing function. Our bond of survival transcends differences.
    Teri became a bastion of support for our forum. A witty quip-master, her parody of new drug names was quintessential Garvey—“…it makes me think of Buzz Lightyear: “To Imfinzi and beyond.” On starting combination chemo with immunotherapy, she offered: “My motto, walk softly and carry a big drug.” After a clean scan report a member, knowing of her broken collar bone, suggested she not do a happy dance. Teri responded: “Sadly, you know me all too well. [My] Childhood nickname—‘Princess Grace.’”
    Nearly 3 years after surgery, a scan showed tumors in her lung and sacrum. Her second-line treatment in September 2020 was combination chemo (carboplatin, Altima and Keytruda). Scans in April 2021 showed progression. She decided to join the arduous and risky Ivoance Tumor Infiltrating Lymphocytes (TIL) trial which ended early for her after 5 of 6 scheduled infusions. A good news scan was joyfully celebrated in July but by October, cancer cells were found while draining a pericardial effusion. Her defenses down from the TIL trial, Teri struggled to return to good health. She experienced a series of exhausting hospitalizations from October though the New Year that sapped her energy but not her fortitude. Cancer was beating her body not her spirit. In a private message, she sent me this photo with the quip: “I finally love my hair!” Teri chose hospice care on February 19, 2022. She passed surrounded by loved ones on February 25th.
    Teri was one of those very special people I’ve met on my life’s journey. Like so many, her diagnosis was a surprise. Her attitude after diagnosis is one to emulate. Teri told me lung cancer would not change her. She lived every minute of every day caring for people, seeking justice for victims, and helping the unfortunate. She told me she chose the risky TIL trial because it might help someone down the road. It might indeed.
    Stay the course.

  43. Sad
    Tom Galli got a reaction from LouT for a blog entry, LexieCat, Esquire Rests Her Case   
    LexieCat joined us on June 29, 2017 after taking advantage of low-dose CT screening for folks at risk for lung cancer. That test revealed a small highly suspicious single nodule that was surgically removed. She had a successful lobectomy; we all hoped she was one and done.
    Lexie, a screen name for Teri Garvey, was a district attorney in Camden, NJ. In my younger years, Camden, across the Delaware River from Philly, where I lived, was an industrious town bustling with shipbuilding, soup making (the Campbells Soup Company), distilling, and iron working. The deindustrialization of America hit Camden hard and when the jobs left, crime moved in. Camden, now a hard-edged town, made enforcing the law a dangerous occupation. But Teri was a tough lady, fearless, courageous, and dedicated to justice.
    We met in person during the 2018 LUNGevity Summit. She a lawyer, master of words and ideals, and I the engineer, entrenched in physics and things, discovered a fond friendship. Summits are our “shining city upon a hill”. Surviving lung cancer is a mighty forcing function. Our bond of survival transcends differences.
    Teri became a bastion of support for our forum. A witty quip-master, her parody of new drug names was quintessential Garvey—“…it makes me think of Buzz Lightyear: “To Imfinzi and beyond.” On starting combination chemo with immunotherapy, she offered: “My motto, walk softly and carry a big drug.” After a clean scan report a member, knowing of her broken collar bone, suggested she not do a happy dance. Teri responded: “Sadly, you know me all too well. [My] Childhood nickname—‘Princess Grace.’”
    Nearly 3 years after surgery, a scan showed tumors in her lung and sacrum. Her second-line treatment in September 2020 was combination chemo (carboplatin, Altima and Keytruda). Scans in April 2021 showed progression. She decided to join the arduous and risky Ivoance Tumor Infiltrating Lymphocytes (TIL) trial which ended early for her after 5 of 6 scheduled infusions. A good news scan was joyfully celebrated in July but by October, cancer cells were found while draining a pericardial effusion. Her defenses down from the TIL trial, Teri struggled to return to good health. She experienced a series of exhausting hospitalizations from October though the New Year that sapped her energy but not her fortitude. Cancer was beating her body not her spirit. In a private message, she sent me this photo with the quip: “I finally love my hair!” Teri chose hospice care on February 19, 2022. She passed surrounded by loved ones on February 25th.
    Teri was one of those very special people I’ve met on my life’s journey. Like so many, her diagnosis was a surprise. Her attitude after diagnosis is one to emulate. Teri told me lung cancer would not change her. She lived every minute of every day caring for people, seeking justice for victims, and helping the unfortunate. She told me she chose the risky TIL trial because it might help someone down the road. It might indeed.
    Stay the course.

  44. Like
    Tom Galli got a reaction from RJN for a blog entry, LexieCat, Esquire Rests Her Case   
    LexieCat joined us on June 29, 2017 after taking advantage of low-dose CT screening for folks at risk for lung cancer. That test revealed a small highly suspicious single nodule that was surgically removed. She had a successful lobectomy; we all hoped she was one and done.
    Lexie, a screen name for Teri Garvey, was a district attorney in Camden, NJ. In my younger years, Camden, across the Delaware River from Philly, where I lived, was an industrious town bustling with shipbuilding, soup making (the Campbells Soup Company), distilling, and iron working. The deindustrialization of America hit Camden hard and when the jobs left, crime moved in. Camden, now a hard-edged town, made enforcing the law a dangerous occupation. But Teri was a tough lady, fearless, courageous, and dedicated to justice.
    We met in person during the 2018 LUNGevity Summit. She a lawyer, master of words and ideals, and I the engineer, entrenched in physics and things, discovered a fond friendship. Summits are our “shining city upon a hill”. Surviving lung cancer is a mighty forcing function. Our bond of survival transcends differences.
    Teri became a bastion of support for our forum. A witty quip-master, her parody of new drug names was quintessential Garvey—“…it makes me think of Buzz Lightyear: “To Imfinzi and beyond.” On starting combination chemo with immunotherapy, she offered: “My motto, walk softly and carry a big drug.” After a clean scan report a member, knowing of her broken collar bone, suggested she not do a happy dance. Teri responded: “Sadly, you know me all too well. [My] Childhood nickname—‘Princess Grace.’”
    Nearly 3 years after surgery, a scan showed tumors in her lung and sacrum. Her second-line treatment in September 2020 was combination chemo (carboplatin, Altima and Keytruda). Scans in April 2021 showed progression. She decided to join the arduous and risky Ivoance Tumor Infiltrating Lymphocytes (TIL) trial which ended early for her after 5 of 6 scheduled infusions. A good news scan was joyfully celebrated in July but by October, cancer cells were found while draining a pericardial effusion. Her defenses down from the TIL trial, Teri struggled to return to good health. She experienced a series of exhausting hospitalizations from October though the New Year that sapped her energy but not her fortitude. Cancer was beating her body not her spirit. In a private message, she sent me this photo with the quip: “I finally love my hair!” Teri chose hospice care on February 19, 2022. She passed surrounded by loved ones on February 25th.
    Teri was one of those very special people I’ve met on my life’s journey. Like so many, her diagnosis was a surprise. Her attitude after diagnosis is one to emulate. Teri told me lung cancer would not change her. She lived every minute of every day caring for people, seeking justice for victims, and helping the unfortunate. She told me she chose the risky TIL trial because it might help someone down the road. It might indeed.
    Stay the course.

  45. Like
    Tom Galli got a reaction from Karen_L for a blog entry, LexieCat, Esquire Rests Her Case   
    LexieCat joined us on June 29, 2017 after taking advantage of low-dose CT screening for folks at risk for lung cancer. That test revealed a small highly suspicious single nodule that was surgically removed. She had a successful lobectomy; we all hoped she was one and done.
    Lexie, a screen name for Teri Garvey, was a district attorney in Camden, NJ. In my younger years, Camden, across the Delaware River from Philly, where I lived, was an industrious town bustling with shipbuilding, soup making (the Campbells Soup Company), distilling, and iron working. The deindustrialization of America hit Camden hard and when the jobs left, crime moved in. Camden, now a hard-edged town, made enforcing the law a dangerous occupation. But Teri was a tough lady, fearless, courageous, and dedicated to justice.
    We met in person during the 2018 LUNGevity Summit. She a lawyer, master of words and ideals, and I the engineer, entrenched in physics and things, discovered a fond friendship. Summits are our “shining city upon a hill”. Surviving lung cancer is a mighty forcing function. Our bond of survival transcends differences.
    Teri became a bastion of support for our forum. A witty quip-master, her parody of new drug names was quintessential Garvey—“…it makes me think of Buzz Lightyear: “To Imfinzi and beyond.” On starting combination chemo with immunotherapy, she offered: “My motto, walk softly and carry a big drug.” After a clean scan report a member, knowing of her broken collar bone, suggested she not do a happy dance. Teri responded: “Sadly, you know me all too well. [My] Childhood nickname—‘Princess Grace.’”
    Nearly 3 years after surgery, a scan showed tumors in her lung and sacrum. Her second-line treatment in September 2020 was combination chemo (carboplatin, Altima and Keytruda). Scans in April 2021 showed progression. She decided to join the arduous and risky Ivoance Tumor Infiltrating Lymphocytes (TIL) trial which ended early for her after 5 of 6 scheduled infusions. A good news scan was joyfully celebrated in July but by October, cancer cells were found while draining a pericardial effusion. Her defenses down from the TIL trial, Teri struggled to return to good health. She experienced a series of exhausting hospitalizations from October though the New Year that sapped her energy but not her fortitude. Cancer was beating her body not her spirit. In a private message, she sent me this photo with the quip: “I finally love my hair!” Teri chose hospice care on February 19, 2022. She passed surrounded by loved ones on February 25th.
    Teri was one of those very special people I’ve met on my life’s journey. Like so many, her diagnosis was a surprise. Her attitude after diagnosis is one to emulate. Teri told me lung cancer would not change her. She lived every minute of every day caring for people, seeking justice for victims, and helping the unfortunate. She told me she chose the risky TIL trial because it might help someone down the road. It might indeed.
    Stay the course.

  46. Like
    Tom Galli got a reaction from Jason 74 for a blog entry, 10 Steps to Surviving Lung Cancer from a Survivor   
    MY STEPS TO SURVIVING A LUNG CANCER DIAGNOSIS
    Step 1 – Invest in sophisticated diagnosics before diagnosis
    If you smoke, were a long-term smoker, or are in an occupation that exposes you to carcinogenic toxins (asbestos removal, auto mechanic, painter, etc.), I suggest getting a computed tomography (CT) scan, often called a CAT scan, of the chest once a year. Insurance now covers it and CT will detect tumors far earlier than a chest x-ray. Early detection of small tumors dramatically enhances your survival chances. I had a chest x-ray in January 2004 and was diagnosed with stage 3b, non-small cell lung cancer the following month. The tumor hadn’t shown on the x-ray; but at diagnosis, it was almost 3 inches long and ½ inch in diameter. The only symptom I had was coughing up blood the day before diagnosis. Learn more about early CT screening.
    Step 2 – Choose a good general practitioner 
    Your general practitioner may be the manager of your lung cancer treatment. The GP likely will pick your cancer team and may need to do a little arm-twisting to get things moving. Therefore, there can be great benefits to having a GP who is seasoned and well known in the medical community. I prefer doctors of osteopathic medicine to medical doctors. I’ve found that in my experience the former treat people, not patients. I believe a good physician shows kindness, consideration, and compassion toward those in his or her care. These characteristics are essential. Be sure you know your GP and your GP knows you. Such knowledge and trust will give you a survival edge. There are great health care professionals out there.
    Step 3 – Ensure your oncologist is a physician
    A doctor has a degree in medicine and a license to practice. A physician is devoted to restoring, maintaining, and promoting your good health. My physician oncologist does a complete examination (looks in eyes, nose, and throat, checks pulse in the extremities, checks reflexes, listens to breathing and heart rate) every visit. He reviews and explains all test results and asks how I feel. He looks at me as I speak, and he listens and makes notes on what I say. He carefully explains medical treatment alternatives that may arrest the disease, and together we choose each next step. He never rushes consultations and, consequently, often is late to scheduled appointments. Because his tardiness results from spending time with those he treats, I know he cares about me and every other patient. These are some characteristics your physician oncologist should possess.
    Step 4 – Learn about your disease
    At diagnosis, I had no idea what lung cancer was. Moreover, I didn’t know what an oncologist did, nor could I spell the word! After diagnosis, I read everything I could find about the disease; a good resource is the www.LUNGevity.org website. Then I read medical journals, government reports, research papers, and studies. I made notes about things I didn’t understand and asked questions at my oncology consultations. My wife attended every consultation, procedure, and test to ensure every question was asked and answered, and that we understood the answers. You need to know about type, stage, statistics, radiation, diagnostics, chemotherapy, side effects, surgical options, and so much more. Your chances of survival are improved if you are informed enough to ask highly perceptive questions.
    Step 5 – Acquire a sanguine attitude quickly
    Cancer is a disease of death; lung cancer kills more than all other cancers. Your attitude toward treatment is, I believe, essential to survival. When you acquire a sanguine attitude, your treatment team will notice your optimism. They will enjoy interacting with you; they will care about you. I strongly suggest you read Stephen Jay Gould’s essay “The Median Isn’t the Message” to help you understand survival statistics and find optimism about what appear to be bleak probability of survival projections. Join a cancer blog or messageboard. I am a member of several where I can broadcast my complaints and protestations to people who understand and have useful advice for coping. Find cancer support groups and join one. Most people who treat you have no idea how you are feeling. But survivors in cancer support groups understand; they know how you feel—you’ll fit right in!
    Step 6 – Any port in a storm
    There is no such thing as “a little stick!” During procedures and treatment, almost everyone will attempt to gain access to your veins with an intravenous device of some type. All such intrusions are uncomfortable, and unless the practitioner is good and lucky he or she will miss more often than not. If your treatment involves intravenously administered chemotherapy, you likely will get stuck at least once a week. A good way to avoid discomfort and frustration is to ask for a port. Installation involves simple, low-risk surgery. Once in place, you need to keep the area clean and exercise precautions when bathing—but access to your veins is no longer a storm but a port in a storm!
    Step 7 – Don’t believe the miracle cure
    The consequences of a lung cancer diagnosis are frightening. For most, it will be your first serious encounter with the prospect of death. When you type “lung cancer” into Google, you will be bombarded by advertisement that promises miracle cure at considerable expense. There is no such thing as a miracle cure! Before you invest time (now precious) investigating one of these “too good to be true” remedies, check it out on www.quackwatch.org and discuss it with your physician. Oncology is a medical science. Procedures, drugs, and protocols are tested using scientific methods that are published and reviewed by peers and regulating organizations. When science-based breakthroughs are discovered, they are broadcast very quickly throughout the practitioner community.Read about Steve Jobs—one of the smartest technologists and businessmen the world has ever known—who delayed his cancer treatment.
    Step 8 – Don’t try to tough it out
    I am a retired soldier and believed I was man enough to handle almost anything. Cancer proved to be the “anything” I could not handle! I suffered a long time trying to tough it out before I admitted I was depressed. My physician’s response: “Of course you are depressed—how could you not be?” He prescribed appropriate medication, arranged consultations with a psychologist, and suggested I attend support groups. Unless you are tougher than I, you will experience depression. Admit it and accept help. Here are some other things you might try. Ask for the “freeze spray” before an IV is used. If claustrophobic, get a script for Xanax and take it shortly before scans. Even in summer, wear warm clothing to diagnostic and infusion sessions. Some areas where these take place are kept very cold. Many treatment centers have volunteers—engage one in conversation. Many are survivors or caregivers and have a wealth of helpful information. During consultations, I was so frightened I couldn’t rationally ask questions about results or next steps, and I certainly couldn’t remember what was said. Consequently, I never go alone to a consultation. I suggest if you can, always have someone with you too.
    Step 9 – Become a calendar maniac
    If you have a smartphone with a calendar application, become an expert in its use. If not, keep a paper “cancer calendar” to record information. Your life after diagnosis will likely become filled with scheduled appointments, and given the nature of the disease and intensity of the battle, these are appointments you don’t want to miss. For example, my chemotherapy cycle required an infusion every third Friday. I had to record three rounds of steroid medication taken every six hours before each infusion. I had a scheduled blood test every Monday following infusion. Nausea started Sunday morning and lasted until Tuesday. Joint pain started Wednesday and lasted until Saturday. If I took the nausea medication about an hour before onset, symptoms often were minimal. Furthermore, if I started pain medication a couple of hours before onset, my pain was manageable. I used the alarm feature on my phone to warn me in advance. Plus, there was life to live, and the calendar helped me avoid conflicts between my cancer treatment schedule and my life events schedule.
    Step 10 – Choose to live
    When asked about my cancer experience, I often tell those in treatment that cancer is a disease of life or death. I believe if you choose treatment, you are choosing life. And if you choose to live, do something with the life you are given. The “something” will be different for each of us, but doing whatever you enjoy or find fulfilling is so important. If you enjoyed an activity before diagnosis, do it afterward. Look at yourself in the mirror every morning. If you don’t see an expiration date stamped on your forehead, then enjoy the day and look forward to the next! Oh, by the way, your hair will grow back! Baldness is a beautiful badge of courage.
    Stay the course.
  47. Like
    Tom Galli got a reaction from alascerca for a blog entry, Uncertain Treatment Outcomes: A Baseball Model   
    Baseball is a game that requires patient players and fans. Like lung cancer treatment, there is a lot of waiting for something to happen. Also like lung cancer, the game is unpredictable. A single pitch can change the outcome of a game like a single cell can change the outcome of treatment. And like lung cancer, baseball has many uncertainties and these are defined by odds. The best hitters succeed a little better than one in three times; the best teams winning about six in ten games. Baseball players need to persevere against low odds of success to achieve victory. So do lung cancer patients.
    A lung cancer diagnosis is devastating. Recurrence after treatment is common and traumatizing. We ought to prepare for the distress of recurrence. Treatment, even for those diagnosed at early stage, is not likely to be a walk-off home run. I was not prepared for treatment failure. How common is recurrence?
    A National Cancer Institute study suggests about 33 percent of stage IA and IB patients experience a reoccurrence. Up to 66 percent of stage IIA, IIB, or IIIA experience a reoccurrence. Interestingly, these percentages are virtually identical for both adenocarcinoma and squamous cell lung cancers. What about stage IIIB or IV disease? The study reports recurrence about half that of lower stages but suggests this is due to competing risk of mortality.
    Including surgery, my treatment success average was a dismal 1 for 5. That translates to a baseball batting average of .200, yielding a quick trip to the minor leagues. I had four recurrences after no evidence of disease (NED) treatments. We didn’t know perseverance was a requirement and we were not prepared.
    How should we prepare? Here is what I didn’t do. Have a frank conversation with my oncologist seeking information on recurrence likelihood. Share this information with my family to ensure they were prepared for bad news. Finally, celebrate my NED state by fully engaging in life. NED is that extra life treatment buys and we did not take maximum advantage of it. 
    A sidebar benefit of surviving is accumulating lessons learned. I now completely understand that lung cancer is a persistent malady that is difficult to eradicate with unpredictable treatment outcomes. Like the best baseball players, we need to take our turn at each new treatment with a fresh perspective, forgetting our last experience and striving only to put the ball in play and arrest our disease. 
    Stay the course.
  48. Like
    Tom Galli got a reaction from LeeLee1908 for a blog entry, 10 Steps to Surviving Lung Cancer from a Survivor   
    MY STEPS TO SURVIVING A LUNG CANCER DIAGNOSIS
    Step 1 – Invest in sophisticated diagnosics before diagnosis
    If you smoke, were a long-term smoker, or are in an occupation that exposes you to carcinogenic toxins (asbestos removal, auto mechanic, painter, etc.), I suggest getting a computed tomography (CT) scan, often called a CAT scan, of the chest once a year. Insurance now covers it and CT will detect tumors far earlier than a chest x-ray. Early detection of small tumors dramatically enhances your survival chances. I had a chest x-ray in January 2004 and was diagnosed with stage 3b, non-small cell lung cancer the following month. The tumor hadn’t shown on the x-ray; but at diagnosis, it was almost 3 inches long and ½ inch in diameter. The only symptom I had was coughing up blood the day before diagnosis. Learn more about early CT screening.
    Step 2 – Choose a good general practitioner 
    Your general practitioner may be the manager of your lung cancer treatment. The GP likely will pick your cancer team and may need to do a little arm-twisting to get things moving. Therefore, there can be great benefits to having a GP who is seasoned and well known in the medical community. I prefer doctors of osteopathic medicine to medical doctors. I’ve found that in my experience the former treat people, not patients. I believe a good physician shows kindness, consideration, and compassion toward those in his or her care. These characteristics are essential. Be sure you know your GP and your GP knows you. Such knowledge and trust will give you a survival edge. There are great health care professionals out there.
    Step 3 – Ensure your oncologist is a physician
    A doctor has a degree in medicine and a license to practice. A physician is devoted to restoring, maintaining, and promoting your good health. My physician oncologist does a complete examination (looks in eyes, nose, and throat, checks pulse in the extremities, checks reflexes, listens to breathing and heart rate) every visit. He reviews and explains all test results and asks how I feel. He looks at me as I speak, and he listens and makes notes on what I say. He carefully explains medical treatment alternatives that may arrest the disease, and together we choose each next step. He never rushes consultations and, consequently, often is late to scheduled appointments. Because his tardiness results from spending time with those he treats, I know he cares about me and every other patient. These are some characteristics your physician oncologist should possess.
    Step 4 – Learn about your disease
    At diagnosis, I had no idea what lung cancer was. Moreover, I didn’t know what an oncologist did, nor could I spell the word! After diagnosis, I read everything I could find about the disease; a good resource is the www.LUNGevity.org website. Then I read medical journals, government reports, research papers, and studies. I made notes about things I didn’t understand and asked questions at my oncology consultations. My wife attended every consultation, procedure, and test to ensure every question was asked and answered, and that we understood the answers. You need to know about type, stage, statistics, radiation, diagnostics, chemotherapy, side effects, surgical options, and so much more. Your chances of survival are improved if you are informed enough to ask highly perceptive questions.
    Step 5 – Acquire a sanguine attitude quickly
    Cancer is a disease of death; lung cancer kills more than all other cancers. Your attitude toward treatment is, I believe, essential to survival. When you acquire a sanguine attitude, your treatment team will notice your optimism. They will enjoy interacting with you; they will care about you. I strongly suggest you read Stephen Jay Gould’s essay “The Median Isn’t the Message” to help you understand survival statistics and find optimism about what appear to be bleak probability of survival projections. Join a cancer blog or messageboard. I am a member of several where I can broadcast my complaints and protestations to people who understand and have useful advice for coping. Find cancer support groups and join one. Most people who treat you have no idea how you are feeling. But survivors in cancer support groups understand; they know how you feel—you’ll fit right in!
    Step 6 – Any port in a storm
    There is no such thing as “a little stick!” During procedures and treatment, almost everyone will attempt to gain access to your veins with an intravenous device of some type. All such intrusions are uncomfortable, and unless the practitioner is good and lucky he or she will miss more often than not. If your treatment involves intravenously administered chemotherapy, you likely will get stuck at least once a week. A good way to avoid discomfort and frustration is to ask for a port. Installation involves simple, low-risk surgery. Once in place, you need to keep the area clean and exercise precautions when bathing—but access to your veins is no longer a storm but a port in a storm!
    Step 7 – Don’t believe the miracle cure
    The consequences of a lung cancer diagnosis are frightening. For most, it will be your first serious encounter with the prospect of death. When you type “lung cancer” into Google, you will be bombarded by advertisement that promises miracle cure at considerable expense. There is no such thing as a miracle cure! Before you invest time (now precious) investigating one of these “too good to be true” remedies, check it out on www.quackwatch.org and discuss it with your physician. Oncology is a medical science. Procedures, drugs, and protocols are tested using scientific methods that are published and reviewed by peers and regulating organizations. When science-based breakthroughs are discovered, they are broadcast very quickly throughout the practitioner community.Read about Steve Jobs—one of the smartest technologists and businessmen the world has ever known—who delayed his cancer treatment.
    Step 8 – Don’t try to tough it out
    I am a retired soldier and believed I was man enough to handle almost anything. Cancer proved to be the “anything” I could not handle! I suffered a long time trying to tough it out before I admitted I was depressed. My physician’s response: “Of course you are depressed—how could you not be?” He prescribed appropriate medication, arranged consultations with a psychologist, and suggested I attend support groups. Unless you are tougher than I, you will experience depression. Admit it and accept help. Here are some other things you might try. Ask for the “freeze spray” before an IV is used. If claustrophobic, get a script for Xanax and take it shortly before scans. Even in summer, wear warm clothing to diagnostic and infusion sessions. Some areas where these take place are kept very cold. Many treatment centers have volunteers—engage one in conversation. Many are survivors or caregivers and have a wealth of helpful information. During consultations, I was so frightened I couldn’t rationally ask questions about results or next steps, and I certainly couldn’t remember what was said. Consequently, I never go alone to a consultation. I suggest if you can, always have someone with you too.
    Step 9 – Become a calendar maniac
    If you have a smartphone with a calendar application, become an expert in its use. If not, keep a paper “cancer calendar” to record information. Your life after diagnosis will likely become filled with scheduled appointments, and given the nature of the disease and intensity of the battle, these are appointments you don’t want to miss. For example, my chemotherapy cycle required an infusion every third Friday. I had to record three rounds of steroid medication taken every six hours before each infusion. I had a scheduled blood test every Monday following infusion. Nausea started Sunday morning and lasted until Tuesday. Joint pain started Wednesday and lasted until Saturday. If I took the nausea medication about an hour before onset, symptoms often were minimal. Furthermore, if I started pain medication a couple of hours before onset, my pain was manageable. I used the alarm feature on my phone to warn me in advance. Plus, there was life to live, and the calendar helped me avoid conflicts between my cancer treatment schedule and my life events schedule.
    Step 10 – Choose to live
    When asked about my cancer experience, I often tell those in treatment that cancer is a disease of life or death. I believe if you choose treatment, you are choosing life. And if you choose to live, do something with the life you are given. The “something” will be different for each of us, but doing whatever you enjoy or find fulfilling is so important. If you enjoyed an activity before diagnosis, do it afterward. Look at yourself in the mirror every morning. If you don’t see an expiration date stamped on your forehead, then enjoy the day and look forward to the next! Oh, by the way, your hair will grow back! Baldness is a beautiful badge of courage.
    Stay the course.
  49. Like
    Tom Galli got a reaction from ToniH for a blog entry, 10 Steps to Surviving Lung Cancer from a Survivor   
    MY STEPS TO SURVIVING A LUNG CANCER DIAGNOSIS
    Step 1 – Invest in sophisticated diagnosics before diagnosis
    If you smoke, were a long-term smoker, or are in an occupation that exposes you to carcinogenic toxins (asbestos removal, auto mechanic, painter, etc.), I suggest getting a computed tomography (CT) scan, often called a CAT scan, of the chest once a year. Insurance now covers it and CT will detect tumors far earlier than a chest x-ray. Early detection of small tumors dramatically enhances your survival chances. I had a chest x-ray in January 2004 and was diagnosed with stage 3b, non-small cell lung cancer the following month. The tumor hadn’t shown on the x-ray; but at diagnosis, it was almost 3 inches long and ½ inch in diameter. The only symptom I had was coughing up blood the day before diagnosis. Learn more about early CT screening.
    Step 2 – Choose a good general practitioner 
    Your general practitioner may be the manager of your lung cancer treatment. The GP likely will pick your cancer team and may need to do a little arm-twisting to get things moving. Therefore, there can be great benefits to having a GP who is seasoned and well known in the medical community. I prefer doctors of osteopathic medicine to medical doctors. I’ve found that in my experience the former treat people, not patients. I believe a good physician shows kindness, consideration, and compassion toward those in his or her care. These characteristics are essential. Be sure you know your GP and your GP knows you. Such knowledge and trust will give you a survival edge. There are great health care professionals out there.
    Step 3 – Ensure your oncologist is a physician
    A doctor has a degree in medicine and a license to practice. A physician is devoted to restoring, maintaining, and promoting your good health. My physician oncologist does a complete examination (looks in eyes, nose, and throat, checks pulse in the extremities, checks reflexes, listens to breathing and heart rate) every visit. He reviews and explains all test results and asks how I feel. He looks at me as I speak, and he listens and makes notes on what I say. He carefully explains medical treatment alternatives that may arrest the disease, and together we choose each next step. He never rushes consultations and, consequently, often is late to scheduled appointments. Because his tardiness results from spending time with those he treats, I know he cares about me and every other patient. These are some characteristics your physician oncologist should possess.
    Step 4 – Learn about your disease
    At diagnosis, I had no idea what lung cancer was. Moreover, I didn’t know what an oncologist did, nor could I spell the word! After diagnosis, I read everything I could find about the disease; a good resource is the www.LUNGevity.org website. Then I read medical journals, government reports, research papers, and studies. I made notes about things I didn’t understand and asked questions at my oncology consultations. My wife attended every consultation, procedure, and test to ensure every question was asked and answered, and that we understood the answers. You need to know about type, stage, statistics, radiation, diagnostics, chemotherapy, side effects, surgical options, and so much more. Your chances of survival are improved if you are informed enough to ask highly perceptive questions.
    Step 5 – Acquire a sanguine attitude quickly
    Cancer is a disease of death; lung cancer kills more than all other cancers. Your attitude toward treatment is, I believe, essential to survival. When you acquire a sanguine attitude, your treatment team will notice your optimism. They will enjoy interacting with you; they will care about you. I strongly suggest you read Stephen Jay Gould’s essay “The Median Isn’t the Message” to help you understand survival statistics and find optimism about what appear to be bleak probability of survival projections. Join a cancer blog or messageboard. I am a member of several where I can broadcast my complaints and protestations to people who understand and have useful advice for coping. Find cancer support groups and join one. Most people who treat you have no idea how you are feeling. But survivors in cancer support groups understand; they know how you feel—you’ll fit right in!
    Step 6 – Any port in a storm
    There is no such thing as “a little stick!” During procedures and treatment, almost everyone will attempt to gain access to your veins with an intravenous device of some type. All such intrusions are uncomfortable, and unless the practitioner is good and lucky he or she will miss more often than not. If your treatment involves intravenously administered chemotherapy, you likely will get stuck at least once a week. A good way to avoid discomfort and frustration is to ask for a port. Installation involves simple, low-risk surgery. Once in place, you need to keep the area clean and exercise precautions when bathing—but access to your veins is no longer a storm but a port in a storm!
    Step 7 – Don’t believe the miracle cure
    The consequences of a lung cancer diagnosis are frightening. For most, it will be your first serious encounter with the prospect of death. When you type “lung cancer” into Google, you will be bombarded by advertisement that promises miracle cure at considerable expense. There is no such thing as a miracle cure! Before you invest time (now precious) investigating one of these “too good to be true” remedies, check it out on www.quackwatch.org and discuss it with your physician. Oncology is a medical science. Procedures, drugs, and protocols are tested using scientific methods that are published and reviewed by peers and regulating organizations. When science-based breakthroughs are discovered, they are broadcast very quickly throughout the practitioner community.Read about Steve Jobs—one of the smartest technologists and businessmen the world has ever known—who delayed his cancer treatment.
    Step 8 – Don’t try to tough it out
    I am a retired soldier and believed I was man enough to handle almost anything. Cancer proved to be the “anything” I could not handle! I suffered a long time trying to tough it out before I admitted I was depressed. My physician’s response: “Of course you are depressed—how could you not be?” He prescribed appropriate medication, arranged consultations with a psychologist, and suggested I attend support groups. Unless you are tougher than I, you will experience depression. Admit it and accept help. Here are some other things you might try. Ask for the “freeze spray” before an IV is used. If claustrophobic, get a script for Xanax and take it shortly before scans. Even in summer, wear warm clothing to diagnostic and infusion sessions. Some areas where these take place are kept very cold. Many treatment centers have volunteers—engage one in conversation. Many are survivors or caregivers and have a wealth of helpful information. During consultations, I was so frightened I couldn’t rationally ask questions about results or next steps, and I certainly couldn’t remember what was said. Consequently, I never go alone to a consultation. I suggest if you can, always have someone with you too.
    Step 9 – Become a calendar maniac
    If you have a smartphone with a calendar application, become an expert in its use. If not, keep a paper “cancer calendar” to record information. Your life after diagnosis will likely become filled with scheduled appointments, and given the nature of the disease and intensity of the battle, these are appointments you don’t want to miss. For example, my chemotherapy cycle required an infusion every third Friday. I had to record three rounds of steroid medication taken every six hours before each infusion. I had a scheduled blood test every Monday following infusion. Nausea started Sunday morning and lasted until Tuesday. Joint pain started Wednesday and lasted until Saturday. If I took the nausea medication about an hour before onset, symptoms often were minimal. Furthermore, if I started pain medication a couple of hours before onset, my pain was manageable. I used the alarm feature on my phone to warn me in advance. Plus, there was life to live, and the calendar helped me avoid conflicts between my cancer treatment schedule and my life events schedule.
    Step 10 – Choose to live
    When asked about my cancer experience, I often tell those in treatment that cancer is a disease of life or death. I believe if you choose treatment, you are choosing life. And if you choose to live, do something with the life you are given. The “something” will be different for each of us, but doing whatever you enjoy or find fulfilling is so important. If you enjoyed an activity before diagnosis, do it afterward. Look at yourself in the mirror every morning. If you don’t see an expiration date stamped on your forehead, then enjoy the day and look forward to the next! Oh, by the way, your hair will grow back! Baldness is a beautiful badge of courage.
    Stay the course.
  50. Like
    Tom Galli got a reaction from alascerca for a blog entry, 10 Steps to Surviving Lung Cancer from a Survivor   
    MY STEPS TO SURVIVING A LUNG CANCER DIAGNOSIS
    Step 1 – Invest in sophisticated diagnosics before diagnosis
    If you smoke, were a long-term smoker, or are in an occupation that exposes you to carcinogenic toxins (asbestos removal, auto mechanic, painter, etc.), I suggest getting a computed tomography (CT) scan, often called a CAT scan, of the chest once a year. Insurance now covers it and CT will detect tumors far earlier than a chest x-ray. Early detection of small tumors dramatically enhances your survival chances. I had a chest x-ray in January 2004 and was diagnosed with stage 3b, non-small cell lung cancer the following month. The tumor hadn’t shown on the x-ray; but at diagnosis, it was almost 3 inches long and ½ inch in diameter. The only symptom I had was coughing up blood the day before diagnosis. Learn more about early CT screening.
    Step 2 – Choose a good general practitioner 
    Your general practitioner may be the manager of your lung cancer treatment. The GP likely will pick your cancer team and may need to do a little arm-twisting to get things moving. Therefore, there can be great benefits to having a GP who is seasoned and well known in the medical community. I prefer doctors of osteopathic medicine to medical doctors. I’ve found that in my experience the former treat people, not patients. I believe a good physician shows kindness, consideration, and compassion toward those in his or her care. These characteristics are essential. Be sure you know your GP and your GP knows you. Such knowledge and trust will give you a survival edge. There are great health care professionals out there.
    Step 3 – Ensure your oncologist is a physician
    A doctor has a degree in medicine and a license to practice. A physician is devoted to restoring, maintaining, and promoting your good health. My physician oncologist does a complete examination (looks in eyes, nose, and throat, checks pulse in the extremities, checks reflexes, listens to breathing and heart rate) every visit. He reviews and explains all test results and asks how I feel. He looks at me as I speak, and he listens and makes notes on what I say. He carefully explains medical treatment alternatives that may arrest the disease, and together we choose each next step. He never rushes consultations and, consequently, often is late to scheduled appointments. Because his tardiness results from spending time with those he treats, I know he cares about me and every other patient. These are some characteristics your physician oncologist should possess.
    Step 4 – Learn about your disease
    At diagnosis, I had no idea what lung cancer was. Moreover, I didn’t know what an oncologist did, nor could I spell the word! After diagnosis, I read everything I could find about the disease; a good resource is the www.LUNGevity.org website. Then I read medical journals, government reports, research papers, and studies. I made notes about things I didn’t understand and asked questions at my oncology consultations. My wife attended every consultation, procedure, and test to ensure every question was asked and answered, and that we understood the answers. You need to know about type, stage, statistics, radiation, diagnostics, chemotherapy, side effects, surgical options, and so much more. Your chances of survival are improved if you are informed enough to ask highly perceptive questions.
    Step 5 – Acquire a sanguine attitude quickly
    Cancer is a disease of death; lung cancer kills more than all other cancers. Your attitude toward treatment is, I believe, essential to survival. When you acquire a sanguine attitude, your treatment team will notice your optimism. They will enjoy interacting with you; they will care about you. I strongly suggest you read Stephen Jay Gould’s essay “The Median Isn’t the Message” to help you understand survival statistics and find optimism about what appear to be bleak probability of survival projections. Join a cancer blog or messageboard. I am a member of several where I can broadcast my complaints and protestations to people who understand and have useful advice for coping. Find cancer support groups and join one. Most people who treat you have no idea how you are feeling. But survivors in cancer support groups understand; they know how you feel—you’ll fit right in!
    Step 6 – Any port in a storm
    There is no such thing as “a little stick!” During procedures and treatment, almost everyone will attempt to gain access to your veins with an intravenous device of some type. All such intrusions are uncomfortable, and unless the practitioner is good and lucky he or she will miss more often than not. If your treatment involves intravenously administered chemotherapy, you likely will get stuck at least once a week. A good way to avoid discomfort and frustration is to ask for a port. Installation involves simple, low-risk surgery. Once in place, you need to keep the area clean and exercise precautions when bathing—but access to your veins is no longer a storm but a port in a storm!
    Step 7 – Don’t believe the miracle cure
    The consequences of a lung cancer diagnosis are frightening. For most, it will be your first serious encounter with the prospect of death. When you type “lung cancer” into Google, you will be bombarded by advertisement that promises miracle cure at considerable expense. There is no such thing as a miracle cure! Before you invest time (now precious) investigating one of these “too good to be true” remedies, check it out on www.quackwatch.org and discuss it with your physician. Oncology is a medical science. Procedures, drugs, and protocols are tested using scientific methods that are published and reviewed by peers and regulating organizations. When science-based breakthroughs are discovered, they are broadcast very quickly throughout the practitioner community.Read about Steve Jobs—one of the smartest technologists and businessmen the world has ever known—who delayed his cancer treatment.
    Step 8 – Don’t try to tough it out
    I am a retired soldier and believed I was man enough to handle almost anything. Cancer proved to be the “anything” I could not handle! I suffered a long time trying to tough it out before I admitted I was depressed. My physician’s response: “Of course you are depressed—how could you not be?” He prescribed appropriate medication, arranged consultations with a psychologist, and suggested I attend support groups. Unless you are tougher than I, you will experience depression. Admit it and accept help. Here are some other things you might try. Ask for the “freeze spray” before an IV is used. If claustrophobic, get a script for Xanax and take it shortly before scans. Even in summer, wear warm clothing to diagnostic and infusion sessions. Some areas where these take place are kept very cold. Many treatment centers have volunteers—engage one in conversation. Many are survivors or caregivers and have a wealth of helpful information. During consultations, I was so frightened I couldn’t rationally ask questions about results or next steps, and I certainly couldn’t remember what was said. Consequently, I never go alone to a consultation. I suggest if you can, always have someone with you too.
    Step 9 – Become a calendar maniac
    If you have a smartphone with a calendar application, become an expert in its use. If not, keep a paper “cancer calendar” to record information. Your life after diagnosis will likely become filled with scheduled appointments, and given the nature of the disease and intensity of the battle, these are appointments you don’t want to miss. For example, my chemotherapy cycle required an infusion every third Friday. I had to record three rounds of steroid medication taken every six hours before each infusion. I had a scheduled blood test every Monday following infusion. Nausea started Sunday morning and lasted until Tuesday. Joint pain started Wednesday and lasted until Saturday. If I took the nausea medication about an hour before onset, symptoms often were minimal. Furthermore, if I started pain medication a couple of hours before onset, my pain was manageable. I used the alarm feature on my phone to warn me in advance. Plus, there was life to live, and the calendar helped me avoid conflicts between my cancer treatment schedule and my life events schedule.
    Step 10 – Choose to live
    When asked about my cancer experience, I often tell those in treatment that cancer is a disease of life or death. I believe if you choose treatment, you are choosing life. And if you choose to live, do something with the life you are given. The “something” will be different for each of us, but doing whatever you enjoy or find fulfilling is so important. If you enjoyed an activity before diagnosis, do it afterward. Look at yourself in the mirror every morning. If you don’t see an expiration date stamped on your forehead, then enjoy the day and look forward to the next! Oh, by the way, your hair will grow back! Baldness is a beautiful badge of courage.
    Stay the course.
  51. Thanks
    Tom Galli got a reaction from DMaddox for a blog entry, Uncertain Treatment Outcomes: A Baseball Model   
    Baseball is a game that requires patient players and fans. Like lung cancer treatment, there is a lot of waiting for something to happen. Also like lung cancer, the game is unpredictable. A single pitch can change the outcome of a game like a single cell can change the outcome of treatment. And like lung cancer, baseball has many uncertainties and these are defined by odds. The best hitters succeed a little better than one in three times; the best teams winning about six in ten games. Baseball players need to persevere against low odds of success to achieve victory. So do lung cancer patients.
    A lung cancer diagnosis is devastating. Recurrence after treatment is common and traumatizing. We ought to prepare for the distress of recurrence. Treatment, even for those diagnosed at early stage, is not likely to be a walk-off home run. I was not prepared for treatment failure. How common is recurrence?
    A National Cancer Institute study suggests about 33 percent of stage IA and IB patients experience a reoccurrence. Up to 66 percent of stage IIA, IIB, or IIIA experience a reoccurrence. Interestingly, these percentages are virtually identical for both adenocarcinoma and squamous cell lung cancers. What about stage IIIB or IV disease? The study reports recurrence about half that of lower stages but suggests this is due to competing risk of mortality.
    Including surgery, my treatment success average was a dismal 1 for 5. That translates to a baseball batting average of .200, yielding a quick trip to the minor leagues. I had four recurrences after no evidence of disease (NED) treatments. We didn’t know perseverance was a requirement and we were not prepared.
    How should we prepare? Here is what I didn’t do. Have a frank conversation with my oncologist seeking information on recurrence likelihood. Share this information with my family to ensure they were prepared for bad news. Finally, celebrate my NED state by fully engaging in life. NED is that extra life treatment buys and we did not take maximum advantage of it. 
    A sidebar benefit of surviving is accumulating lessons learned. I now completely understand that lung cancer is a persistent malady that is difficult to eradicate with unpredictable treatment outcomes. Like the best baseball players, we need to take our turn at each new treatment with a fresh perspective, forgetting our last experience and striving only to put the ball in play and arrest our disease. 
    Stay the course.
  52. Like
    Tom Galli got a reaction from Dona for a blog entry, Uncertain Treatment Outcomes: A Baseball Model   
    Baseball is a game that requires patient players and fans. Like lung cancer treatment, there is a lot of waiting for something to happen. Also like lung cancer, the game is unpredictable. A single pitch can change the outcome of a game like a single cell can change the outcome of treatment. And like lung cancer, baseball has many uncertainties and these are defined by odds. The best hitters succeed a little better than one in three times; the best teams winning about six in ten games. Baseball players need to persevere against low odds of success to achieve victory. So do lung cancer patients.
    A lung cancer diagnosis is devastating. Recurrence after treatment is common and traumatizing. We ought to prepare for the distress of recurrence. Treatment, even for those diagnosed at early stage, is not likely to be a walk-off home run. I was not prepared for treatment failure. How common is recurrence?
    A National Cancer Institute study suggests about 33 percent of stage IA and IB patients experience a reoccurrence. Up to 66 percent of stage IIA, IIB, or IIIA experience a reoccurrence. Interestingly, these percentages are virtually identical for both adenocarcinoma and squamous cell lung cancers. What about stage IIIB or IV disease? The study reports recurrence about half that of lower stages but suggests this is due to competing risk of mortality.
    Including surgery, my treatment success average was a dismal 1 for 5. That translates to a baseball batting average of .200, yielding a quick trip to the minor leagues. I had four recurrences after no evidence of disease (NED) treatments. We didn’t know perseverance was a requirement and we were not prepared.
    How should we prepare? Here is what I didn’t do. Have a frank conversation with my oncologist seeking information on recurrence likelihood. Share this information with my family to ensure they were prepared for bad news. Finally, celebrate my NED state by fully engaging in life. NED is that extra life treatment buys and we did not take maximum advantage of it. 
    A sidebar benefit of surviving is accumulating lessons learned. I now completely understand that lung cancer is a persistent malady that is difficult to eradicate with unpredictable treatment outcomes. Like the best baseball players, we need to take our turn at each new treatment with a fresh perspective, forgetting our last experience and striving only to put the ball in play and arrest our disease. 
    Stay the course.
  53. Like
    Tom Galli got a reaction from AleHondaa for a blog entry, 10 Steps to Surviving Lung Cancer from a Survivor   
    MY STEPS TO SURVIVING A LUNG CANCER DIAGNOSIS
    Step 1 – Invest in sophisticated diagnosics before diagnosis
    If you smoke, were a long-term smoker, or are in an occupation that exposes you to carcinogenic toxins (asbestos removal, auto mechanic, painter, etc.), I suggest getting a computed tomography (CT) scan, often called a CAT scan, of the chest once a year. Insurance now covers it and CT will detect tumors far earlier than a chest x-ray. Early detection of small tumors dramatically enhances your survival chances. I had a chest x-ray in January 2004 and was diagnosed with stage 3b, non-small cell lung cancer the following month. The tumor hadn’t shown on the x-ray; but at diagnosis, it was almost 3 inches long and ½ inch in diameter. The only symptom I had was coughing up blood the day before diagnosis. Learn more about early CT screening.
    Step 2 – Choose a good general practitioner 
    Your general practitioner may be the manager of your lung cancer treatment. The GP likely will pick your cancer team and may need to do a little arm-twisting to get things moving. Therefore, there can be great benefits to having a GP who is seasoned and well known in the medical community. I prefer doctors of osteopathic medicine to medical doctors. I’ve found that in my experience the former treat people, not patients. I believe a good physician shows kindness, consideration, and compassion toward those in his or her care. These characteristics are essential. Be sure you know your GP and your GP knows you. Such knowledge and trust will give you a survival edge. There are great health care professionals out there.
    Step 3 – Ensure your oncologist is a physician
    A doctor has a degree in medicine and a license to practice. A physician is devoted to restoring, maintaining, and promoting your good health. My physician oncologist does a complete examination (looks in eyes, nose, and throat, checks pulse in the extremities, checks reflexes, listens to breathing and heart rate) every visit. He reviews and explains all test results and asks how I feel. He looks at me as I speak, and he listens and makes notes on what I say. He carefully explains medical treatment alternatives that may arrest the disease, and together we choose each next step. He never rushes consultations and, consequently, often is late to scheduled appointments. Because his tardiness results from spending time with those he treats, I know he cares about me and every other patient. These are some characteristics your physician oncologist should possess.
    Step 4 – Learn about your disease
    At diagnosis, I had no idea what lung cancer was. Moreover, I didn’t know what an oncologist did, nor could I spell the word! After diagnosis, I read everything I could find about the disease; a good resource is the www.LUNGevity.org website. Then I read medical journals, government reports, research papers, and studies. I made notes about things I didn’t understand and asked questions at my oncology consultations. My wife attended every consultation, procedure, and test to ensure every question was asked and answered, and that we understood the answers. You need to know about type, stage, statistics, radiation, diagnostics, chemotherapy, side effects, surgical options, and so much more. Your chances of survival are improved if you are informed enough to ask highly perceptive questions.
    Step 5 – Acquire a sanguine attitude quickly
    Cancer is a disease of death; lung cancer kills more than all other cancers. Your attitude toward treatment is, I believe, essential to survival. When you acquire a sanguine attitude, your treatment team will notice your optimism. They will enjoy interacting with you; they will care about you. I strongly suggest you read Stephen Jay Gould’s essay “The Median Isn’t the Message” to help you understand survival statistics and find optimism about what appear to be bleak probability of survival projections. Join a cancer blog or messageboard. I am a member of several where I can broadcast my complaints and protestations to people who understand and have useful advice for coping. Find cancer support groups and join one. Most people who treat you have no idea how you are feeling. But survivors in cancer support groups understand; they know how you feel—you’ll fit right in!
    Step 6 – Any port in a storm
    There is no such thing as “a little stick!” During procedures and treatment, almost everyone will attempt to gain access to your veins with an intravenous device of some type. All such intrusions are uncomfortable, and unless the practitioner is good and lucky he or she will miss more often than not. If your treatment involves intravenously administered chemotherapy, you likely will get stuck at least once a week. A good way to avoid discomfort and frustration is to ask for a port. Installation involves simple, low-risk surgery. Once in place, you need to keep the area clean and exercise precautions when bathing—but access to your veins is no longer a storm but a port in a storm!
    Step 7 – Don’t believe the miracle cure
    The consequences of a lung cancer diagnosis are frightening. For most, it will be your first serious encounter with the prospect of death. When you type “lung cancer” into Google, you will be bombarded by advertisement that promises miracle cure at considerable expense. There is no such thing as a miracle cure! Before you invest time (now precious) investigating one of these “too good to be true” remedies, check it out on www.quackwatch.org and discuss it with your physician. Oncology is a medical science. Procedures, drugs, and protocols are tested using scientific methods that are published and reviewed by peers and regulating organizations. When science-based breakthroughs are discovered, they are broadcast very quickly throughout the practitioner community.Read about Steve Jobs—one of the smartest technologists and businessmen the world has ever known—who delayed his cancer treatment.
    Step 8 – Don’t try to tough it out
    I am a retired soldier and believed I was man enough to handle almost anything. Cancer proved to be the “anything” I could not handle! I suffered a long time trying to tough it out before I admitted I was depressed. My physician’s response: “Of course you are depressed—how could you not be?” He prescribed appropriate medication, arranged consultations with a psychologist, and suggested I attend support groups. Unless you are tougher than I, you will experience depression. Admit it and accept help. Here are some other things you might try. Ask for the “freeze spray” before an IV is used. If claustrophobic, get a script for Xanax and take it shortly before scans. Even in summer, wear warm clothing to diagnostic and infusion sessions. Some areas where these take place are kept very cold. Many treatment centers have volunteers—engage one in conversation. Many are survivors or caregivers and have a wealth of helpful information. During consultations, I was so frightened I couldn’t rationally ask questions about results or next steps, and I certainly couldn’t remember what was said. Consequently, I never go alone to a consultation. I suggest if you can, always have someone with you too.
    Step 9 – Become a calendar maniac
    If you have a smartphone with a calendar application, become an expert in its use. If not, keep a paper “cancer calendar” to record information. Your life after diagnosis will likely become filled with scheduled appointments, and given the nature of the disease and intensity of the battle, these are appointments you don’t want to miss. For example, my chemotherapy cycle required an infusion every third Friday. I had to record three rounds of steroid medication taken every six hours before each infusion. I had a scheduled blood test every Monday following infusion. Nausea started Sunday morning and lasted until Tuesday. Joint pain started Wednesday and lasted until Saturday. If I took the nausea medication about an hour before onset, symptoms often were minimal. Furthermore, if I started pain medication a couple of hours before onset, my pain was manageable. I used the alarm feature on my phone to warn me in advance. Plus, there was life to live, and the calendar helped me avoid conflicts between my cancer treatment schedule and my life events schedule.
    Step 10 – Choose to live
    When asked about my cancer experience, I often tell those in treatment that cancer is a disease of life or death. I believe if you choose treatment, you are choosing life. And if you choose to live, do something with the life you are given. The “something” will be different for each of us, but doing whatever you enjoy or find fulfilling is so important. If you enjoyed an activity before diagnosis, do it afterward. Look at yourself in the mirror every morning. If you don’t see an expiration date stamped on your forehead, then enjoy the day and look forward to the next! Oh, by the way, your hair will grow back! Baldness is a beautiful badge of courage.
    Stay the course.
  54. Like
    Tom Galli got a reaction from bang for a blog entry, 10 Steps to Surviving Lung Cancer from a Survivor   
    MY STEPS TO SURVIVING A LUNG CANCER DIAGNOSIS
    Step 1 – Invest in sophisticated diagnosics before diagnosis
    If you smoke, were a long-term smoker, or are in an occupation that exposes you to carcinogenic toxins (asbestos removal, auto mechanic, painter, etc.), I suggest getting a computed tomography (CT) scan, often called a CAT scan, of the chest once a year. Insurance now covers it and CT will detect tumors far earlier than a chest x-ray. Early detection of small tumors dramatically enhances your survival chances. I had a chest x-ray in January 2004 and was diagnosed with stage 3b, non-small cell lung cancer the following month. The tumor hadn’t shown on the x-ray; but at diagnosis, it was almost 3 inches long and ½ inch in diameter. The only symptom I had was coughing up blood the day before diagnosis. Learn more about early CT screening.
    Step 2 – Choose a good general practitioner 
    Your general practitioner may be the manager of your lung cancer treatment. The GP likely will pick your cancer team and may need to do a little arm-twisting to get things moving. Therefore, there can be great benefits to having a GP who is seasoned and well known in the medical community. I prefer doctors of osteopathic medicine to medical doctors. I’ve found that in my experience the former treat people, not patients. I believe a good physician shows kindness, consideration, and compassion toward those in his or her care. These characteristics are essential. Be sure you know your GP and your GP knows you. Such knowledge and trust will give you a survival edge. There are great health care professionals out there.
    Step 3 – Ensure your oncologist is a physician
    A doctor has a degree in medicine and a license to practice. A physician is devoted to restoring, maintaining, and promoting your good health. My physician oncologist does a complete examination (looks in eyes, nose, and throat, checks pulse in the extremities, checks reflexes, listens to breathing and heart rate) every visit. He reviews and explains all test results and asks how I feel. He looks at me as I speak, and he listens and makes notes on what I say. He carefully explains medical treatment alternatives that may arrest the disease, and together we choose each next step. He never rushes consultations and, consequently, often is late to scheduled appointments. Because his tardiness results from spending time with those he treats, I know he cares about me and every other patient. These are some characteristics your physician oncologist should possess.
    Step 4 – Learn about your disease
    At diagnosis, I had no idea what lung cancer was. Moreover, I didn’t know what an oncologist did, nor could I spell the word! After diagnosis, I read everything I could find about the disease; a good resource is the www.LUNGevity.org website. Then I read medical journals, government reports, research papers, and studies. I made notes about things I didn’t understand and asked questions at my oncology consultations. My wife attended every consultation, procedure, and test to ensure every question was asked and answered, and that we understood the answers. You need to know about type, stage, statistics, radiation, diagnostics, chemotherapy, side effects, surgical options, and so much more. Your chances of survival are improved if you are informed enough to ask highly perceptive questions.
    Step 5 – Acquire a sanguine attitude quickly
    Cancer is a disease of death; lung cancer kills more than all other cancers. Your attitude toward treatment is, I believe, essential to survival. When you acquire a sanguine attitude, your treatment team will notice your optimism. They will enjoy interacting with you; they will care about you. I strongly suggest you read Stephen Jay Gould’s essay “The Median Isn’t the Message” to help you understand survival statistics and find optimism about what appear to be bleak probability of survival projections. Join a cancer blog or messageboard. I am a member of several where I can broadcast my complaints and protestations to people who understand and have useful advice for coping. Find cancer support groups and join one. Most people who treat you have no idea how you are feeling. But survivors in cancer support groups understand; they know how you feel—you’ll fit right in!
    Step 6 – Any port in a storm
    There is no such thing as “a little stick!” During procedures and treatment, almost everyone will attempt to gain access to your veins with an intravenous device of some type. All such intrusions are uncomfortable, and unless the practitioner is good and lucky he or she will miss more often than not. If your treatment involves intravenously administered chemotherapy, you likely will get stuck at least once a week. A good way to avoid discomfort and frustration is to ask for a port. Installation involves simple, low-risk surgery. Once in place, you need to keep the area clean and exercise precautions when bathing—but access to your veins is no longer a storm but a port in a storm!
    Step 7 – Don’t believe the miracle cure
    The consequences of a lung cancer diagnosis are frightening. For most, it will be your first serious encounter with the prospect of death. When you type “lung cancer” into Google, you will be bombarded by advertisement that promises miracle cure at considerable expense. There is no such thing as a miracle cure! Before you invest time (now precious) investigating one of these “too good to be true” remedies, check it out on www.quackwatch.org and discuss it with your physician. Oncology is a medical science. Procedures, drugs, and protocols are tested using scientific methods that are published and reviewed by peers and regulating organizations. When science-based breakthroughs are discovered, they are broadcast very quickly throughout the practitioner community.Read about Steve Jobs—one of the smartest technologists and businessmen the world has ever known—who delayed his cancer treatment.
    Step 8 – Don’t try to tough it out
    I am a retired soldier and believed I was man enough to handle almost anything. Cancer proved to be the “anything” I could not handle! I suffered a long time trying to tough it out before I admitted I was depressed. My physician’s response: “Of course you are depressed—how could you not be?” He prescribed appropriate medication, arranged consultations with a psychologist, and suggested I attend support groups. Unless you are tougher than I, you will experience depression. Admit it and accept help. Here are some other things you might try. Ask for the “freeze spray” before an IV is used. If claustrophobic, get a script for Xanax and take it shortly before scans. Even in summer, wear warm clothing to diagnostic and infusion sessions. Some areas where these take place are kept very cold. Many treatment centers have volunteers—engage one in conversation. Many are survivors or caregivers and have a wealth of helpful information. During consultations, I was so frightened I couldn’t rationally ask questions about results or next steps, and I certainly couldn’t remember what was said. Consequently, I never go alone to a consultation. I suggest if you can, always have someone with you too.
    Step 9 – Become a calendar maniac
    If you have a smartphone with a calendar application, become an expert in its use. If not, keep a paper “cancer calendar” to record information. Your life after diagnosis will likely become filled with scheduled appointments, and given the nature of the disease and intensity of the battle, these are appointments you don’t want to miss. For example, my chemotherapy cycle required an infusion every third Friday. I had to record three rounds of steroid medication taken every six hours before each infusion. I had a scheduled blood test every Monday following infusion. Nausea started Sunday morning and lasted until Tuesday. Joint pain started Wednesday and lasted until Saturday. If I took the nausea medication about an hour before onset, symptoms often were minimal. Furthermore, if I started pain medication a couple of hours before onset, my pain was manageable. I used the alarm feature on my phone to warn me in advance. Plus, there was life to live, and the calendar helped me avoid conflicts between my cancer treatment schedule and my life events schedule.
    Step 10 – Choose to live
    When asked about my cancer experience, I often tell those in treatment that cancer is a disease of life or death. I believe if you choose treatment, you are choosing life. And if you choose to live, do something with the life you are given. The “something” will be different for each of us, but doing whatever you enjoy or find fulfilling is so important. If you enjoyed an activity before diagnosis, do it afterward. Look at yourself in the mirror every morning. If you don’t see an expiration date stamped on your forehead, then enjoy the day and look forward to the next! Oh, by the way, your hair will grow back! Baldness is a beautiful badge of courage.
    Stay the course.
  55. Like
    Tom Galli got a reaction from Marilyn Raven for a blog entry, 10 Steps to Surviving Lung Cancer from a Survivor   
    MY STEPS TO SURVIVING A LUNG CANCER DIAGNOSIS
    Step 1 – Invest in sophisticated diagnosics before diagnosis
    If you smoke, were a long-term smoker, or are in an occupation that exposes you to carcinogenic toxins (asbestos removal, auto mechanic, painter, etc.), I suggest getting a computed tomography (CT) scan, often called a CAT scan, of the chest once a year. Insurance now covers it and CT will detect tumors far earlier than a chest x-ray. Early detection of small tumors dramatically enhances your survival chances. I had a chest x-ray in January 2004 and was diagnosed with stage 3b, non-small cell lung cancer the following month. The tumor hadn’t shown on the x-ray; but at diagnosis, it was almost 3 inches long and ½ inch in diameter. The only symptom I had was coughing up blood the day before diagnosis. Learn more about early CT screening.
    Step 2 – Choose a good general practitioner 
    Your general practitioner may be the manager of your lung cancer treatment. The GP likely will pick your cancer team and may need to do a little arm-twisting to get things moving. Therefore, there can be great benefits to having a GP who is seasoned and well known in the medical community. I prefer doctors of osteopathic medicine to medical doctors. I’ve found that in my experience the former treat people, not patients. I believe a good physician shows kindness, consideration, and compassion toward those in his or her care. These characteristics are essential. Be sure you know your GP and your GP knows you. Such knowledge and trust will give you a survival edge. There are great health care professionals out there.
    Step 3 – Ensure your oncologist is a physician
    A doctor has a degree in medicine and a license to practice. A physician is devoted to restoring, maintaining, and promoting your good health. My physician oncologist does a complete examination (looks in eyes, nose, and throat, checks pulse in the extremities, checks reflexes, listens to breathing and heart rate) every visit. He reviews and explains all test results and asks how I feel. He looks at me as I speak, and he listens and makes notes on what I say. He carefully explains medical treatment alternatives that may arrest the disease, and together we choose each next step. He never rushes consultations and, consequently, often is late to scheduled appointments. Because his tardiness results from spending time with those he treats, I know he cares about me and every other patient. These are some characteristics your physician oncologist should possess.
    Step 4 – Learn about your disease
    At diagnosis, I had no idea what lung cancer was. Moreover, I didn’t know what an oncologist did, nor could I spell the word! After diagnosis, I read everything I could find about the disease; a good resource is the www.LUNGevity.org website. Then I read medical journals, government reports, research papers, and studies. I made notes about things I didn’t understand and asked questions at my oncology consultations. My wife attended every consultation, procedure, and test to ensure every question was asked and answered, and that we understood the answers. You need to know about type, stage, statistics, radiation, diagnostics, chemotherapy, side effects, surgical options, and so much more. Your chances of survival are improved if you are informed enough to ask highly perceptive questions.
    Step 5 – Acquire a sanguine attitude quickly
    Cancer is a disease of death; lung cancer kills more than all other cancers. Your attitude toward treatment is, I believe, essential to survival. When you acquire a sanguine attitude, your treatment team will notice your optimism. They will enjoy interacting with you; they will care about you. I strongly suggest you read Stephen Jay Gould’s essay “The Median Isn’t the Message” to help you understand survival statistics and find optimism about what appear to be bleak probability of survival projections. Join a cancer blog or messageboard. I am a member of several where I can broadcast my complaints and protestations to people who understand and have useful advice for coping. Find cancer support groups and join one. Most people who treat you have no idea how you are feeling. But survivors in cancer support groups understand; they know how you feel—you’ll fit right in!
    Step 6 – Any port in a storm
    There is no such thing as “a little stick!” During procedures and treatment, almost everyone will attempt to gain access to your veins with an intravenous device of some type. All such intrusions are uncomfortable, and unless the practitioner is good and lucky he or she will miss more often than not. If your treatment involves intravenously administered chemotherapy, you likely will get stuck at least once a week. A good way to avoid discomfort and frustration is to ask for a port. Installation involves simple, low-risk surgery. Once in place, you need to keep the area clean and exercise precautions when bathing—but access to your veins is no longer a storm but a port in a storm!
    Step 7 – Don’t believe the miracle cure
    The consequences of a lung cancer diagnosis are frightening. For most, it will be your first serious encounter with the prospect of death. When you type “lung cancer” into Google, you will be bombarded by advertisement that promises miracle cure at considerable expense. There is no such thing as a miracle cure! Before you invest time (now precious) investigating one of these “too good to be true” remedies, check it out on www.quackwatch.org and discuss it with your physician. Oncology is a medical science. Procedures, drugs, and protocols are tested using scientific methods that are published and reviewed by peers and regulating organizations. When science-based breakthroughs are discovered, they are broadcast very quickly throughout the practitioner community.Read about Steve Jobs—one of the smartest technologists and businessmen the world has ever known—who delayed his cancer treatment.
    Step 8 – Don’t try to tough it out
    I am a retired soldier and believed I was man enough to handle almost anything. Cancer proved to be the “anything” I could not handle! I suffered a long time trying to tough it out before I admitted I was depressed. My physician’s response: “Of course you are depressed—how could you not be?” He prescribed appropriate medication, arranged consultations with a psychologist, and suggested I attend support groups. Unless you are tougher than I, you will experience depression. Admit it and accept help. Here are some other things you might try. Ask for the “freeze spray” before an IV is used. If claustrophobic, get a script for Xanax and take it shortly before scans. Even in summer, wear warm clothing to diagnostic and infusion sessions. Some areas where these take place are kept very cold. Many treatment centers have volunteers—engage one in conversation. Many are survivors or caregivers and have a wealth of helpful information. During consultations, I was so frightened I couldn’t rationally ask questions about results or next steps, and I certainly couldn’t remember what was said. Consequently, I never go alone to a consultation. I suggest if you can, always have someone with you too.
    Step 9 – Become a calendar maniac
    If you have a smartphone with a calendar application, become an expert in its use. If not, keep a paper “cancer calendar” to record information. Your life after diagnosis will likely become filled with scheduled appointments, and given the nature of the disease and intensity of the battle, these are appointments you don’t want to miss. For example, my chemotherapy cycle required an infusion every third Friday. I had to record three rounds of steroid medication taken every six hours before each infusion. I had a scheduled blood test every Monday following infusion. Nausea started Sunday morning and lasted until Tuesday. Joint pain started Wednesday and lasted until Saturday. If I took the nausea medication about an hour before onset, symptoms often were minimal. Furthermore, if I started pain medication a couple of hours before onset, my pain was manageable. I used the alarm feature on my phone to warn me in advance. Plus, there was life to live, and the calendar helped me avoid conflicts between my cancer treatment schedule and my life events schedule.
    Step 10 – Choose to live
    When asked about my cancer experience, I often tell those in treatment that cancer is a disease of life or death. I believe if you choose treatment, you are choosing life. And if you choose to live, do something with the life you are given. The “something” will be different for each of us, but doing whatever you enjoy or find fulfilling is so important. If you enjoyed an activity before diagnosis, do it afterward. Look at yourself in the mirror every morning. If you don’t see an expiration date stamped on your forehead, then enjoy the day and look forward to the next! Oh, by the way, your hair will grow back! Baldness is a beautiful badge of courage.
    Stay the course.
  56. Like
    Tom Galli got a reaction from Suzanna for a blog entry, Uncertain Treatment Outcomes: A Baseball Model   
    Baseball is a game that requires patient players and fans. Like lung cancer treatment, there is a lot of waiting for something to happen. Also like lung cancer, the game is unpredictable. A single pitch can change the outcome of a game like a single cell can change the outcome of treatment. And like lung cancer, baseball has many uncertainties and these are defined by odds. The best hitters succeed a little better than one in three times; the best teams winning about six in ten games. Baseball players need to persevere against low odds of success to achieve victory. So do lung cancer patients.
    A lung cancer diagnosis is devastating. Recurrence after treatment is common and traumatizing. We ought to prepare for the distress of recurrence. Treatment, even for those diagnosed at early stage, is not likely to be a walk-off home run. I was not prepared for treatment failure. How common is recurrence?
    A National Cancer Institute study suggests about 33 percent of stage IA and IB patients experience a reoccurrence. Up to 66 percent of stage IIA, IIB, or IIIA experience a reoccurrence. Interestingly, these percentages are virtually identical for both adenocarcinoma and squamous cell lung cancers. What about stage IIIB or IV disease? The study reports recurrence about half that of lower stages but suggests this is due to competing risk of mortality.
    Including surgery, my treatment success average was a dismal 1 for 5. That translates to a baseball batting average of .200, yielding a quick trip to the minor leagues. I had four recurrences after no evidence of disease (NED) treatments. We didn’t know perseverance was a requirement and we were not prepared.
    How should we prepare? Here is what I didn’t do. Have a frank conversation with my oncologist seeking information on recurrence likelihood. Share this information with my family to ensure they were prepared for bad news. Finally, celebrate my NED state by fully engaging in life. NED is that extra life treatment buys and we did not take maximum advantage of it. 
    A sidebar benefit of surviving is accumulating lessons learned. I now completely understand that lung cancer is a persistent malady that is difficult to eradicate with unpredictable treatment outcomes. Like the best baseball players, we need to take our turn at each new treatment with a fresh perspective, forgetting our last experience and striving only to put the ball in play and arrest our disease. 
    Stay the course.
  57. Like
    Tom Galli got a reaction from Deb W for a blog entry, Uncertain Treatment Outcomes: A Baseball Model   
    Baseball is a game that requires patient players and fans. Like lung cancer treatment, there is a lot of waiting for something to happen. Also like lung cancer, the game is unpredictable. A single pitch can change the outcome of a game like a single cell can change the outcome of treatment. And like lung cancer, baseball has many uncertainties and these are defined by odds. The best hitters succeed a little better than one in three times; the best teams winning about six in ten games. Baseball players need to persevere against low odds of success to achieve victory. So do lung cancer patients.
    A lung cancer diagnosis is devastating. Recurrence after treatment is common and traumatizing. We ought to prepare for the distress of recurrence. Treatment, even for those diagnosed at early stage, is not likely to be a walk-off home run. I was not prepared for treatment failure. How common is recurrence?
    A National Cancer Institute study suggests about 33 percent of stage IA and IB patients experience a reoccurrence. Up to 66 percent of stage IIA, IIB, or IIIA experience a reoccurrence. Interestingly, these percentages are virtually identical for both adenocarcinoma and squamous cell lung cancers. What about stage IIIB or IV disease? The study reports recurrence about half that of lower stages but suggests this is due to competing risk of mortality.
    Including surgery, my treatment success average was a dismal 1 for 5. That translates to a baseball batting average of .200, yielding a quick trip to the minor leagues. I had four recurrences after no evidence of disease (NED) treatments. We didn’t know perseverance was a requirement and we were not prepared.
    How should we prepare? Here is what I didn’t do. Have a frank conversation with my oncologist seeking information on recurrence likelihood. Share this information with my family to ensure they were prepared for bad news. Finally, celebrate my NED state by fully engaging in life. NED is that extra life treatment buys and we did not take maximum advantage of it. 
    A sidebar benefit of surviving is accumulating lessons learned. I now completely understand that lung cancer is a persistent malady that is difficult to eradicate with unpredictable treatment outcomes. Like the best baseball players, we need to take our turn at each new treatment with a fresh perspective, forgetting our last experience and striving only to put the ball in play and arrest our disease. 
    Stay the course.
  58. Like
    Tom Galli got a reaction from Chris S. for a blog entry, 10 Steps to Surviving Lung Cancer from a Survivor   
    MY STEPS TO SURVIVING A LUNG CANCER DIAGNOSIS
    Step 1 – Invest in sophisticated diagnosics before diagnosis
    If you smoke, were a long-term smoker, or are in an occupation that exposes you to carcinogenic toxins (asbestos removal, auto mechanic, painter, etc.), I suggest getting a computed tomography (CT) scan, often called a CAT scan, of the chest once a year. Insurance now covers it and CT will detect tumors far earlier than a chest x-ray. Early detection of small tumors dramatically enhances your survival chances. I had a chest x-ray in January 2004 and was diagnosed with stage 3b, non-small cell lung cancer the following month. The tumor hadn’t shown on the x-ray; but at diagnosis, it was almost 3 inches long and ½ inch in diameter. The only symptom I had was coughing up blood the day before diagnosis. Learn more about early CT screening.
    Step 2 – Choose a good general practitioner 
    Your general practitioner may be the manager of your lung cancer treatment. The GP likely will pick your cancer team and may need to do a little arm-twisting to get things moving. Therefore, there can be great benefits to having a GP who is seasoned and well known in the medical community. I prefer doctors of osteopathic medicine to medical doctors. I’ve found that in my experience the former treat people, not patients. I believe a good physician shows kindness, consideration, and compassion toward those in his or her care. These characteristics are essential. Be sure you know your GP and your GP knows you. Such knowledge and trust will give you a survival edge. There are great health care professionals out there.
    Step 3 – Ensure your oncologist is a physician
    A doctor has a degree in medicine and a license to practice. A physician is devoted to restoring, maintaining, and promoting your good health. My physician oncologist does a complete examination (looks in eyes, nose, and throat, checks pulse in the extremities, checks reflexes, listens to breathing and heart rate) every visit. He reviews and explains all test results and asks how I feel. He looks at me as I speak, and he listens and makes notes on what I say. He carefully explains medical treatment alternatives that may arrest the disease, and together we choose each next step. He never rushes consultations and, consequently, often is late to scheduled appointments. Because his tardiness results from spending time with those he treats, I know he cares about me and every other patient. These are some characteristics your physician oncologist should possess.
    Step 4 – Learn about your disease
    At diagnosis, I had no idea what lung cancer was. Moreover, I didn’t know what an oncologist did, nor could I spell the word! After diagnosis, I read everything I could find about the disease; a good resource is the www.LUNGevity.org website. Then I read medical journals, government reports, research papers, and studies. I made notes about things I didn’t understand and asked questions at my oncology consultations. My wife attended every consultation, procedure, and test to ensure every question was asked and answered, and that we understood the answers. You need to know about type, stage, statistics, radiation, diagnostics, chemotherapy, side effects, surgical options, and so much more. Your chances of survival are improved if you are informed enough to ask highly perceptive questions.
    Step 5 – Acquire a sanguine attitude quickly
    Cancer is a disease of death; lung cancer kills more than all other cancers. Your attitude toward treatment is, I believe, essential to survival. When you acquire a sanguine attitude, your treatment team will notice your optimism. They will enjoy interacting with you; they will care about you. I strongly suggest you read Stephen Jay Gould’s essay “The Median Isn’t the Message” to help you understand survival statistics and find optimism about what appear to be bleak probability of survival projections. Join a cancer blog or messageboard. I am a member of several where I can broadcast my complaints and protestations to people who understand and have useful advice for coping. Find cancer support groups and join one. Most people who treat you have no idea how you are feeling. But survivors in cancer support groups understand; they know how you feel—you’ll fit right in!
    Step 6 – Any port in a storm
    There is no such thing as “a little stick!” During procedures and treatment, almost everyone will attempt to gain access to your veins with an intravenous device of some type. All such intrusions are uncomfortable, and unless the practitioner is good and lucky he or she will miss more often than not. If your treatment involves intravenously administered chemotherapy, you likely will get stuck at least once a week. A good way to avoid discomfort and frustration is to ask for a port. Installation involves simple, low-risk surgery. Once in place, you need to keep the area clean and exercise precautions when bathing—but access to your veins is no longer a storm but a port in a storm!
    Step 7 – Don’t believe the miracle cure
    The consequences of a lung cancer diagnosis are frightening. For most, it will be your first serious encounter with the prospect of death. When you type “lung cancer” into Google, you will be bombarded by advertisement that promises miracle cure at considerable expense. There is no such thing as a miracle cure! Before you invest time (now precious) investigating one of these “too good to be true” remedies, check it out on www.quackwatch.org and discuss it with your physician. Oncology is a medical science. Procedures, drugs, and protocols are tested using scientific methods that are published and reviewed by peers and regulating organizations. When science-based breakthroughs are discovered, they are broadcast very quickly throughout the practitioner community.Read about Steve Jobs—one of the smartest technologists and businessmen the world has ever known—who delayed his cancer treatment.
    Step 8 – Don’t try to tough it out
    I am a retired soldier and believed I was man enough to handle almost anything. Cancer proved to be the “anything” I could not handle! I suffered a long time trying to tough it out before I admitted I was depressed. My physician’s response: “Of course you are depressed—how could you not be?” He prescribed appropriate medication, arranged consultations with a psychologist, and suggested I attend support groups. Unless you are tougher than I, you will experience depression. Admit it and accept help. Here are some other things you might try. Ask for the “freeze spray” before an IV is used. If claustrophobic, get a script for Xanax and take it shortly before scans. Even in summer, wear warm clothing to diagnostic and infusion sessions. Some areas where these take place are kept very cold. Many treatment centers have volunteers—engage one in conversation. Many are survivors or caregivers and have a wealth of helpful information. During consultations, I was so frightened I couldn’t rationally ask questions about results or next steps, and I certainly couldn’t remember what was said. Consequently, I never go alone to a consultation. I suggest if you can, always have someone with you too.
    Step 9 – Become a calendar maniac
    If you have a smartphone with a calendar application, become an expert in its use. If not, keep a paper “cancer calendar” to record information. Your life after diagnosis will likely become filled with scheduled appointments, and given the nature of the disease and intensity of the battle, these are appointments you don’t want to miss. For example, my chemotherapy cycle required an infusion every third Friday. I had to record three rounds of steroid medication taken every six hours before each infusion. I had a scheduled blood test every Monday following infusion. Nausea started Sunday morning and lasted until Tuesday. Joint pain started Wednesday and lasted until Saturday. If I took the nausea medication about an hour before onset, symptoms often were minimal. Furthermore, if I started pain medication a couple of hours before onset, my pain was manageable. I used the alarm feature on my phone to warn me in advance. Plus, there was life to live, and the calendar helped me avoid conflicts between my cancer treatment schedule and my life events schedule.
    Step 10 – Choose to live
    When asked about my cancer experience, I often tell those in treatment that cancer is a disease of life or death. I believe if you choose treatment, you are choosing life. And if you choose to live, do something with the life you are given. The “something” will be different for each of us, but doing whatever you enjoy or find fulfilling is so important. If you enjoyed an activity before diagnosis, do it afterward. Look at yourself in the mirror every morning. If you don’t see an expiration date stamped on your forehead, then enjoy the day and look forward to the next! Oh, by the way, your hair will grow back! Baldness is a beautiful badge of courage.
    Stay the course.
  59. Like
    Tom Galli got a reaction from Deb W for a blog entry, Hope Is A Good Thing   
    Red, in white shirt and loose thin-black tie and sweating in Maine’s summer heat, is leaning on a rock-wall fence.  He’s just opened Andy’s letter found under the black obsidian rock.  In the background we hear Andy reading his evocative description of hope: “Remember Red, hope is a good thing, maybe the best of things and no good thing ever dies.” The movie Shawshank Redemption is a powerful story about hope and life with a message that should resonate with every lung cancer survivor.
    I watched the movie the other day and made the connection.  Andy was imprisoned for two life sentences with no possibility of parole.  He was wrongly convicted of murder and throughout the story of his day-to-day life in prison, everyone tells him “hope is a dangerous thing.”  On escaping, Andy proclaims that hope is “maybe the best of things.”  The movie story line is exactly parallel to the plight of the late-stage diagnosed lung cancer patient ⎯- an unforgiving disease with hope as the most effective means of avoiding consequences.
    For lung cancer, hope is not a medical remedy.  While new lung cancer treatments are emerging more frequently now, basic research funding to diagnose and treat lung cancer lags other cancers.  Perhaps the pace may pick up, one hopes.  Perhaps a treatment may emerge just in time to save a life, one hopes.  Perhaps a miracle remission occurs, one hopes.  Hope may not be a medical remedy but, for many of us, it is our only effective medicament.  And, in my case, hope is “maybe the best of things.” 
    Recall the story line of Shawshank.  Andy’s future is confinement in a mind numbing institution, but he makes a choice to live in a different reality and works diligently, every day, on a novel escape plan. He makes a conscious decision to live.  He embraces the hope of escape against all odds.  Andy’s poignant characterization about life reveals his reasoning: “I guess it comes down to a simple choice, really.  Get busy living or get busy dying.”  Exactly!
    Sometimes in the heat of lung cancer treatment, we forget its purpose ⎯- extended life.  No one knows how long but life for most is extended. So what do we do with the extension?  Re-read Andy’s characterization.
    We long for a period of life extending into satisfying old age.  But most without lung cancer do not dwell on the amount remaining on account.  Lung cancer patients take careful measure of the balance.  But, measure for what end?  I believe, if one chooses treatment, then one chooses life.  Rather than dwell on the remaining balance, focus on doing something you enjoy everyday.  I suggest a survivor forget the past, declare the future irrelevant, and live in the day.
    “Get busy living or get busy dying.”
    Stay the course.
  60. Thanks
    Tom Galli got a reaction from LouT for a blog entry, 10 Steps to Surviving Lung Cancer from a Survivor   
    MY STEPS TO SURVIVING A LUNG CANCER DIAGNOSIS
    Step 1 – Invest in sophisticated diagnosics before diagnosis
    If you smoke, were a long-term smoker, or are in an occupation that exposes you to carcinogenic toxins (asbestos removal, auto mechanic, painter, etc.), I suggest getting a computed tomography (CT) scan, often called a CAT scan, of the chest once a year. Insurance now covers it and CT will detect tumors far earlier than a chest x-ray. Early detection of small tumors dramatically enhances your survival chances. I had a chest x-ray in January 2004 and was diagnosed with stage 3b, non-small cell lung cancer the following month. The tumor hadn’t shown on the x-ray; but at diagnosis, it was almost 3 inches long and ½ inch in diameter. The only symptom I had was coughing up blood the day before diagnosis. Learn more about early CT screening.
    Step 2 – Choose a good general practitioner 
    Your general practitioner may be the manager of your lung cancer treatment. The GP likely will pick your cancer team and may need to do a little arm-twisting to get things moving. Therefore, there can be great benefits to having a GP who is seasoned and well known in the medical community. I prefer doctors of osteopathic medicine to medical doctors. I’ve found that in my experience the former treat people, not patients. I believe a good physician shows kindness, consideration, and compassion toward those in his or her care. These characteristics are essential. Be sure you know your GP and your GP knows you. Such knowledge and trust will give you a survival edge. There are great health care professionals out there.
    Step 3 – Ensure your oncologist is a physician
    A doctor has a degree in medicine and a license to practice. A physician is devoted to restoring, maintaining, and promoting your good health. My physician oncologist does a complete examination (looks in eyes, nose, and throat, checks pulse in the extremities, checks reflexes, listens to breathing and heart rate) every visit. He reviews and explains all test results and asks how I feel. He looks at me as I speak, and he listens and makes notes on what I say. He carefully explains medical treatment alternatives that may arrest the disease, and together we choose each next step. He never rushes consultations and, consequently, often is late to scheduled appointments. Because his tardiness results from spending time with those he treats, I know he cares about me and every other patient. These are some characteristics your physician oncologist should possess.
    Step 4 – Learn about your disease
    At diagnosis, I had no idea what lung cancer was. Moreover, I didn’t know what an oncologist did, nor could I spell the word! After diagnosis, I read everything I could find about the disease; a good resource is the www.LUNGevity.org website. Then I read medical journals, government reports, research papers, and studies. I made notes about things I didn’t understand and asked questions at my oncology consultations. My wife attended every consultation, procedure, and test to ensure every question was asked and answered, and that we understood the answers. You need to know about type, stage, statistics, radiation, diagnostics, chemotherapy, side effects, surgical options, and so much more. Your chances of survival are improved if you are informed enough to ask highly perceptive questions.
    Step 5 – Acquire a sanguine attitude quickly
    Cancer is a disease of death; lung cancer kills more than all other cancers. Your attitude toward treatment is, I believe, essential to survival. When you acquire a sanguine attitude, your treatment team will notice your optimism. They will enjoy interacting with you; they will care about you. I strongly suggest you read Stephen Jay Gould’s essay “The Median Isn’t the Message” to help you understand survival statistics and find optimism about what appear to be bleak probability of survival projections. Join a cancer blog or messageboard. I am a member of several where I can broadcast my complaints and protestations to people who understand and have useful advice for coping. Find cancer support groups and join one. Most people who treat you have no idea how you are feeling. But survivors in cancer support groups understand; they know how you feel—you’ll fit right in!
    Step 6 – Any port in a storm
    There is no such thing as “a little stick!” During procedures and treatment, almost everyone will attempt to gain access to your veins with an intravenous device of some type. All such intrusions are uncomfortable, and unless the practitioner is good and lucky he or she will miss more often than not. If your treatment involves intravenously administered chemotherapy, you likely will get stuck at least once a week. A good way to avoid discomfort and frustration is to ask for a port. Installation involves simple, low-risk surgery. Once in place, you need to keep the area clean and exercise precautions when bathing—but access to your veins is no longer a storm but a port in a storm!
    Step 7 – Don’t believe the miracle cure
    The consequences of a lung cancer diagnosis are frightening. For most, it will be your first serious encounter with the prospect of death. When you type “lung cancer” into Google, you will be bombarded by advertisement that promises miracle cure at considerable expense. There is no such thing as a miracle cure! Before you invest time (now precious) investigating one of these “too good to be true” remedies, check it out on www.quackwatch.org and discuss it with your physician. Oncology is a medical science. Procedures, drugs, and protocols are tested using scientific methods that are published and reviewed by peers and regulating organizations. When science-based breakthroughs are discovered, they are broadcast very quickly throughout the practitioner community.Read about Steve Jobs—one of the smartest technologists and businessmen the world has ever known—who delayed his cancer treatment.
    Step 8 – Don’t try to tough it out
    I am a retired soldier and believed I was man enough to handle almost anything. Cancer proved to be the “anything” I could not handle! I suffered a long time trying to tough it out before I admitted I was depressed. My physician’s response: “Of course you are depressed—how could you not be?” He prescribed appropriate medication, arranged consultations with a psychologist, and suggested I attend support groups. Unless you are tougher than I, you will experience depression. Admit it and accept help. Here are some other things you might try. Ask for the “freeze spray” before an IV is used. If claustrophobic, get a script for Xanax and take it shortly before scans. Even in summer, wear warm clothing to diagnostic and infusion sessions. Some areas where these take place are kept very cold. Many treatment centers have volunteers—engage one in conversation. Many are survivors or caregivers and have a wealth of helpful information. During consultations, I was so frightened I couldn’t rationally ask questions about results or next steps, and I certainly couldn’t remember what was said. Consequently, I never go alone to a consultation. I suggest if you can, always have someone with you too.
    Step 9 – Become a calendar maniac
    If you have a smartphone with a calendar application, become an expert in its use. If not, keep a paper “cancer calendar” to record information. Your life after diagnosis will likely become filled with scheduled appointments, and given the nature of the disease and intensity of the battle, these are appointments you don’t want to miss. For example, my chemotherapy cycle required an infusion every third Friday. I had to record three rounds of steroid medication taken every six hours before each infusion. I had a scheduled blood test every Monday following infusion. Nausea started Sunday morning and lasted until Tuesday. Joint pain started Wednesday and lasted until Saturday. If I took the nausea medication about an hour before onset, symptoms often were minimal. Furthermore, if I started pain medication a couple of hours before onset, my pain was manageable. I used the alarm feature on my phone to warn me in advance. Plus, there was life to live, and the calendar helped me avoid conflicts between my cancer treatment schedule and my life events schedule.
    Step 10 – Choose to live
    When asked about my cancer experience, I often tell those in treatment that cancer is a disease of life or death. I believe if you choose treatment, you are choosing life. And if you choose to live, do something with the life you are given. The “something” will be different for each of us, but doing whatever you enjoy or find fulfilling is so important. If you enjoyed an activity before diagnosis, do it afterward. Look at yourself in the mirror every morning. If you don’t see an expiration date stamped on your forehead, then enjoy the day and look forward to the next! Oh, by the way, your hair will grow back! Baldness is a beautiful badge of courage.
    Stay the course.
  61. Like
    Tom Galli got a reaction from Eileen Kelly for a blog entry, 10 Steps to Surviving Lung Cancer from a Survivor   
    MY STEPS TO SURVIVING A LUNG CANCER DIAGNOSIS
    Step 1 – Invest in sophisticated diagnosics before diagnosis
    If you smoke, were a long-term smoker, or are in an occupation that exposes you to carcinogenic toxins (asbestos removal, auto mechanic, painter, etc.), I suggest getting a computed tomography (CT) scan, often called a CAT scan, of the chest once a year. Insurance now covers it and CT will detect tumors far earlier than a chest x-ray. Early detection of small tumors dramatically enhances your survival chances. I had a chest x-ray in January 2004 and was diagnosed with stage 3b, non-small cell lung cancer the following month. The tumor hadn’t shown on the x-ray; but at diagnosis, it was almost 3 inches long and ½ inch in diameter. The only symptom I had was coughing up blood the day before diagnosis. Learn more about early CT screening.
    Step 2 – Choose a good general practitioner 
    Your general practitioner may be the manager of your lung cancer treatment. The GP likely will pick your cancer team and may need to do a little arm-twisting to get things moving. Therefore, there can be great benefits to having a GP who is seasoned and well known in the medical community. I prefer doctors of osteopathic medicine to medical doctors. I’ve found that in my experience the former treat people, not patients. I believe a good physician shows kindness, consideration, and compassion toward those in his or her care. These characteristics are essential. Be sure you know your GP and your GP knows you. Such knowledge and trust will give you a survival edge. There are great health care professionals out there.
    Step 3 – Ensure your oncologist is a physician
    A doctor has a degree in medicine and a license to practice. A physician is devoted to restoring, maintaining, and promoting your good health. My physician oncologist does a complete examination (looks in eyes, nose, and throat, checks pulse in the extremities, checks reflexes, listens to breathing and heart rate) every visit. He reviews and explains all test results and asks how I feel. He looks at me as I speak, and he listens and makes notes on what I say. He carefully explains medical treatment alternatives that may arrest the disease, and together we choose each next step. He never rushes consultations and, consequently, often is late to scheduled appointments. Because his tardiness results from spending time with those he treats, I know he cares about me and every other patient. These are some characteristics your physician oncologist should possess.
    Step 4 – Learn about your disease
    At diagnosis, I had no idea what lung cancer was. Moreover, I didn’t know what an oncologist did, nor could I spell the word! After diagnosis, I read everything I could find about the disease; a good resource is the www.LUNGevity.org website. Then I read medical journals, government reports, research papers, and studies. I made notes about things I didn’t understand and asked questions at my oncology consultations. My wife attended every consultation, procedure, and test to ensure every question was asked and answered, and that we understood the answers. You need to know about type, stage, statistics, radiation, diagnostics, chemotherapy, side effects, surgical options, and so much more. Your chances of survival are improved if you are informed enough to ask highly perceptive questions.
    Step 5 – Acquire a sanguine attitude quickly
    Cancer is a disease of death; lung cancer kills more than all other cancers. Your attitude toward treatment is, I believe, essential to survival. When you acquire a sanguine attitude, your treatment team will notice your optimism. They will enjoy interacting with you; they will care about you. I strongly suggest you read Stephen Jay Gould’s essay “The Median Isn’t the Message” to help you understand survival statistics and find optimism about what appear to be bleak probability of survival projections. Join a cancer blog or messageboard. I am a member of several where I can broadcast my complaints and protestations to people who understand and have useful advice for coping. Find cancer support groups and join one. Most people who treat you have no idea how you are feeling. But survivors in cancer support groups understand; they know how you feel—you’ll fit right in!
    Step 6 – Any port in a storm
    There is no such thing as “a little stick!” During procedures and treatment, almost everyone will attempt to gain access to your veins with an intravenous device of some type. All such intrusions are uncomfortable, and unless the practitioner is good and lucky he or she will miss more often than not. If your treatment involves intravenously administered chemotherapy, you likely will get stuck at least once a week. A good way to avoid discomfort and frustration is to ask for a port. Installation involves simple, low-risk surgery. Once in place, you need to keep the area clean and exercise precautions when bathing—but access to your veins is no longer a storm but a port in a storm!
    Step 7 – Don’t believe the miracle cure
    The consequences of a lung cancer diagnosis are frightening. For most, it will be your first serious encounter with the prospect of death. When you type “lung cancer” into Google, you will be bombarded by advertisement that promises miracle cure at considerable expense. There is no such thing as a miracle cure! Before you invest time (now precious) investigating one of these “too good to be true” remedies, check it out on www.quackwatch.org and discuss it with your physician. Oncology is a medical science. Procedures, drugs, and protocols are tested using scientific methods that are published and reviewed by peers and regulating organizations. When science-based breakthroughs are discovered, they are broadcast very quickly throughout the practitioner community.Read about Steve Jobs—one of the smartest technologists and businessmen the world has ever known—who delayed his cancer treatment.
    Step 8 – Don’t try to tough it out
    I am a retired soldier and believed I was man enough to handle almost anything. Cancer proved to be the “anything” I could not handle! I suffered a long time trying to tough it out before I admitted I was depressed. My physician’s response: “Of course you are depressed—how could you not be?” He prescribed appropriate medication, arranged consultations with a psychologist, and suggested I attend support groups. Unless you are tougher than I, you will experience depression. Admit it and accept help. Here are some other things you might try. Ask for the “freeze spray” before an IV is used. If claustrophobic, get a script for Xanax and take it shortly before scans. Even in summer, wear warm clothing to diagnostic and infusion sessions. Some areas where these take place are kept very cold. Many treatment centers have volunteers—engage one in conversation. Many are survivors or caregivers and have a wealth of helpful information. During consultations, I was so frightened I couldn’t rationally ask questions about results or next steps, and I certainly couldn’t remember what was said. Consequently, I never go alone to a consultation. I suggest if you can, always have someone with you too.
    Step 9 – Become a calendar maniac
    If you have a smartphone with a calendar application, become an expert in its use. If not, keep a paper “cancer calendar” to record information. Your life after diagnosis will likely become filled with scheduled appointments, and given the nature of the disease and intensity of the battle, these are appointments you don’t want to miss. For example, my chemotherapy cycle required an infusion every third Friday. I had to record three rounds of steroid medication taken every six hours before each infusion. I had a scheduled blood test every Monday following infusion. Nausea started Sunday morning and lasted until Tuesday. Joint pain started Wednesday and lasted until Saturday. If I took the nausea medication about an hour before onset, symptoms often were minimal. Furthermore, if I started pain medication a couple of hours before onset, my pain was manageable. I used the alarm feature on my phone to warn me in advance. Plus, there was life to live, and the calendar helped me avoid conflicts between my cancer treatment schedule and my life events schedule.
    Step 10 – Choose to live
    When asked about my cancer experience, I often tell those in treatment that cancer is a disease of life or death. I believe if you choose treatment, you are choosing life. And if you choose to live, do something with the life you are given. The “something” will be different for each of us, but doing whatever you enjoy or find fulfilling is so important. If you enjoyed an activity before diagnosis, do it afterward. Look at yourself in the mirror every morning. If you don’t see an expiration date stamped on your forehead, then enjoy the day and look forward to the next! Oh, by the way, your hair will grow back! Baldness is a beautiful badge of courage.
    Stay the course.
  62. Like
    Tom Galli got a reaction from DebM for a blog entry, 10 Steps to Surviving Lung Cancer from a Survivor   
    MY STEPS TO SURVIVING A LUNG CANCER DIAGNOSIS
    Step 1 – Invest in sophisticated diagnosics before diagnosis
    If you smoke, were a long-term smoker, or are in an occupation that exposes you to carcinogenic toxins (asbestos removal, auto mechanic, painter, etc.), I suggest getting a computed tomography (CT) scan, often called a CAT scan, of the chest once a year. Insurance now covers it and CT will detect tumors far earlier than a chest x-ray. Early detection of small tumors dramatically enhances your survival chances. I had a chest x-ray in January 2004 and was diagnosed with stage 3b, non-small cell lung cancer the following month. The tumor hadn’t shown on the x-ray; but at diagnosis, it was almost 3 inches long and ½ inch in diameter. The only symptom I had was coughing up blood the day before diagnosis. Learn more about early CT screening.
    Step 2 – Choose a good general practitioner 
    Your general practitioner may be the manager of your lung cancer treatment. The GP likely will pick your cancer team and may need to do a little arm-twisting to get things moving. Therefore, there can be great benefits to having a GP who is seasoned and well known in the medical community. I prefer doctors of osteopathic medicine to medical doctors. I’ve found that in my experience the former treat people, not patients. I believe a good physician shows kindness, consideration, and compassion toward those in his or her care. These characteristics are essential. Be sure you know your GP and your GP knows you. Such knowledge and trust will give you a survival edge. There are great health care professionals out there.
    Step 3 – Ensure your oncologist is a physician
    A doctor has a degree in medicine and a license to practice. A physician is devoted to restoring, maintaining, and promoting your good health. My physician oncologist does a complete examination (looks in eyes, nose, and throat, checks pulse in the extremities, checks reflexes, listens to breathing and heart rate) every visit. He reviews and explains all test results and asks how I feel. He looks at me as I speak, and he listens and makes notes on what I say. He carefully explains medical treatment alternatives that may arrest the disease, and together we choose each next step. He never rushes consultations and, consequently, often is late to scheduled appointments. Because his tardiness results from spending time with those he treats, I know he cares about me and every other patient. These are some characteristics your physician oncologist should possess.
    Step 4 – Learn about your disease
    At diagnosis, I had no idea what lung cancer was. Moreover, I didn’t know what an oncologist did, nor could I spell the word! After diagnosis, I read everything I could find about the disease; a good resource is the www.LUNGevity.org website. Then I read medical journals, government reports, research papers, and studies. I made notes about things I didn’t understand and asked questions at my oncology consultations. My wife attended every consultation, procedure, and test to ensure every question was asked and answered, and that we understood the answers. You need to know about type, stage, statistics, radiation, diagnostics, chemotherapy, side effects, surgical options, and so much more. Your chances of survival are improved if you are informed enough to ask highly perceptive questions.
    Step 5 – Acquire a sanguine attitude quickly
    Cancer is a disease of death; lung cancer kills more than all other cancers. Your attitude toward treatment is, I believe, essential to survival. When you acquire a sanguine attitude, your treatment team will notice your optimism. They will enjoy interacting with you; they will care about you. I strongly suggest you read Stephen Jay Gould’s essay “The Median Isn’t the Message” to help you understand survival statistics and find optimism about what appear to be bleak probability of survival projections. Join a cancer blog or messageboard. I am a member of several where I can broadcast my complaints and protestations to people who understand and have useful advice for coping. Find cancer support groups and join one. Most people who treat you have no idea how you are feeling. But survivors in cancer support groups understand; they know how you feel—you’ll fit right in!
    Step 6 – Any port in a storm
    There is no such thing as “a little stick!” During procedures and treatment, almost everyone will attempt to gain access to your veins with an intravenous device of some type. All such intrusions are uncomfortable, and unless the practitioner is good and lucky he or she will miss more often than not. If your treatment involves intravenously administered chemotherapy, you likely will get stuck at least once a week. A good way to avoid discomfort and frustration is to ask for a port. Installation involves simple, low-risk surgery. Once in place, you need to keep the area clean and exercise precautions when bathing—but access to your veins is no longer a storm but a port in a storm!
    Step 7 – Don’t believe the miracle cure
    The consequences of a lung cancer diagnosis are frightening. For most, it will be your first serious encounter with the prospect of death. When you type “lung cancer” into Google, you will be bombarded by advertisement that promises miracle cure at considerable expense. There is no such thing as a miracle cure! Before you invest time (now precious) investigating one of these “too good to be true” remedies, check it out on www.quackwatch.org and discuss it with your physician. Oncology is a medical science. Procedures, drugs, and protocols are tested using scientific methods that are published and reviewed by peers and regulating organizations. When science-based breakthroughs are discovered, they are broadcast very quickly throughout the practitioner community.Read about Steve Jobs—one of the smartest technologists and businessmen the world has ever known—who delayed his cancer treatment.
    Step 8 – Don’t try to tough it out
    I am a retired soldier and believed I was man enough to handle almost anything. Cancer proved to be the “anything” I could not handle! I suffered a long time trying to tough it out before I admitted I was depressed. My physician’s response: “Of course you are depressed—how could you not be?” He prescribed appropriate medication, arranged consultations with a psychologist, and suggested I attend support groups. Unless you are tougher than I, you will experience depression. Admit it and accept help. Here are some other things you might try. Ask for the “freeze spray” before an IV is used. If claustrophobic, get a script for Xanax and take it shortly before scans. Even in summer, wear warm clothing to diagnostic and infusion sessions. Some areas where these take place are kept very cold. Many treatment centers have volunteers—engage one in conversation. Many are survivors or caregivers and have a wealth of helpful information. During consultations, I was so frightened I couldn’t rationally ask questions about results or next steps, and I certainly couldn’t remember what was said. Consequently, I never go alone to a consultation. I suggest if you can, always have someone with you too.
    Step 9 – Become a calendar maniac
    If you have a smartphone with a calendar application, become an expert in its use. If not, keep a paper “cancer calendar” to record information. Your life after diagnosis will likely become filled with scheduled appointments, and given the nature of the disease and intensity of the battle, these are appointments you don’t want to miss. For example, my chemotherapy cycle required an infusion every third Friday. I had to record three rounds of steroid medication taken every six hours before each infusion. I had a scheduled blood test every Monday following infusion. Nausea started Sunday morning and lasted until Tuesday. Joint pain started Wednesday and lasted until Saturday. If I took the nausea medication about an hour before onset, symptoms often were minimal. Furthermore, if I started pain medication a couple of hours before onset, my pain was manageable. I used the alarm feature on my phone to warn me in advance. Plus, there was life to live, and the calendar helped me avoid conflicts between my cancer treatment schedule and my life events schedule.
    Step 10 – Choose to live
    When asked about my cancer experience, I often tell those in treatment that cancer is a disease of life or death. I believe if you choose treatment, you are choosing life. And if you choose to live, do something with the life you are given. The “something” will be different for each of us, but doing whatever you enjoy or find fulfilling is so important. If you enjoyed an activity before diagnosis, do it afterward. Look at yourself in the mirror every morning. If you don’t see an expiration date stamped on your forehead, then enjoy the day and look forward to the next! Oh, by the way, your hair will grow back! Baldness is a beautiful badge of courage.
    Stay the course.
  63. Like
    Tom Galli got a reaction from Susan Cornett for a blog entry, 10 Steps to Surviving Lung Cancer from a Survivor   
    MY STEPS TO SURVIVING A LUNG CANCER DIAGNOSIS
    Step 1 – Invest in sophisticated diagnosics before diagnosis
    If you smoke, were a long-term smoker, or are in an occupation that exposes you to carcinogenic toxins (asbestos removal, auto mechanic, painter, etc.), I suggest getting a computed tomography (CT) scan, often called a CAT scan, of the chest once a year. Insurance now covers it and CT will detect tumors far earlier than a chest x-ray. Early detection of small tumors dramatically enhances your survival chances. I had a chest x-ray in January 2004 and was diagnosed with stage 3b, non-small cell lung cancer the following month. The tumor hadn’t shown on the x-ray; but at diagnosis, it was almost 3 inches long and ½ inch in diameter. The only symptom I had was coughing up blood the day before diagnosis. Learn more about early CT screening.
    Step 2 – Choose a good general practitioner 
    Your general practitioner may be the manager of your lung cancer treatment. The GP likely will pick your cancer team and may need to do a little arm-twisting to get things moving. Therefore, there can be great benefits to having a GP who is seasoned and well known in the medical community. I prefer doctors of osteopathic medicine to medical doctors. I’ve found that in my experience the former treat people, not patients. I believe a good physician shows kindness, consideration, and compassion toward those in his or her care. These characteristics are essential. Be sure you know your GP and your GP knows you. Such knowledge and trust will give you a survival edge. There are great health care professionals out there.
    Step 3 – Ensure your oncologist is a physician
    A doctor has a degree in medicine and a license to practice. A physician is devoted to restoring, maintaining, and promoting your good health. My physician oncologist does a complete examination (looks in eyes, nose, and throat, checks pulse in the extremities, checks reflexes, listens to breathing and heart rate) every visit. He reviews and explains all test results and asks how I feel. He looks at me as I speak, and he listens and makes notes on what I say. He carefully explains medical treatment alternatives that may arrest the disease, and together we choose each next step. He never rushes consultations and, consequently, often is late to scheduled appointments. Because his tardiness results from spending time with those he treats, I know he cares about me and every other patient. These are some characteristics your physician oncologist should possess.
    Step 4 – Learn about your disease
    At diagnosis, I had no idea what lung cancer was. Moreover, I didn’t know what an oncologist did, nor could I spell the word! After diagnosis, I read everything I could find about the disease; a good resource is the www.LUNGevity.org website. Then I read medical journals, government reports, research papers, and studies. I made notes about things I didn’t understand and asked questions at my oncology consultations. My wife attended every consultation, procedure, and test to ensure every question was asked and answered, and that we understood the answers. You need to know about type, stage, statistics, radiation, diagnostics, chemotherapy, side effects, surgical options, and so much more. Your chances of survival are improved if you are informed enough to ask highly perceptive questions.
    Step 5 – Acquire a sanguine attitude quickly
    Cancer is a disease of death; lung cancer kills more than all other cancers. Your attitude toward treatment is, I believe, essential to survival. When you acquire a sanguine attitude, your treatment team will notice your optimism. They will enjoy interacting with you; they will care about you. I strongly suggest you read Stephen Jay Gould’s essay “The Median Isn’t the Message” to help you understand survival statistics and find optimism about what appear to be bleak probability of survival projections. Join a cancer blog or messageboard. I am a member of several where I can broadcast my complaints and protestations to people who understand and have useful advice for coping. Find cancer support groups and join one. Most people who treat you have no idea how you are feeling. But survivors in cancer support groups understand; they know how you feel—you’ll fit right in!
    Step 6 – Any port in a storm
    There is no such thing as “a little stick!” During procedures and treatment, almost everyone will attempt to gain access to your veins with an intravenous device of some type. All such intrusions are uncomfortable, and unless the practitioner is good and lucky he or she will miss more often than not. If your treatment involves intravenously administered chemotherapy, you likely will get stuck at least once a week. A good way to avoid discomfort and frustration is to ask for a port. Installation involves simple, low-risk surgery. Once in place, you need to keep the area clean and exercise precautions when bathing—but access to your veins is no longer a storm but a port in a storm!
    Step 7 – Don’t believe the miracle cure
    The consequences of a lung cancer diagnosis are frightening. For most, it will be your first serious encounter with the prospect of death. When you type “lung cancer” into Google, you will be bombarded by advertisement that promises miracle cure at considerable expense. There is no such thing as a miracle cure! Before you invest time (now precious) investigating one of these “too good to be true” remedies, check it out on www.quackwatch.org and discuss it with your physician. Oncology is a medical science. Procedures, drugs, and protocols are tested using scientific methods that are published and reviewed by peers and regulating organizations. When science-based breakthroughs are discovered, they are broadcast very quickly throughout the practitioner community.Read about Steve Jobs—one of the smartest technologists and businessmen the world has ever known—who delayed his cancer treatment.
    Step 8 – Don’t try to tough it out
    I am a retired soldier and believed I was man enough to handle almost anything. Cancer proved to be the “anything” I could not handle! I suffered a long time trying to tough it out before I admitted I was depressed. My physician’s response: “Of course you are depressed—how could you not be?” He prescribed appropriate medication, arranged consultations with a psychologist, and suggested I attend support groups. Unless you are tougher than I, you will experience depression. Admit it and accept help. Here are some other things you might try. Ask for the “freeze spray” before an IV is used. If claustrophobic, get a script for Xanax and take it shortly before scans. Even in summer, wear warm clothing to diagnostic and infusion sessions. Some areas where these take place are kept very cold. Many treatment centers have volunteers—engage one in conversation. Many are survivors or caregivers and have a wealth of helpful information. During consultations, I was so frightened I couldn’t rationally ask questions about results or next steps, and I certainly couldn’t remember what was said. Consequently, I never go alone to a consultation. I suggest if you can, always have someone with you too.
    Step 9 – Become a calendar maniac
    If you have a smartphone with a calendar application, become an expert in its use. If not, keep a paper “cancer calendar” to record information. Your life after diagnosis will likely become filled with scheduled appointments, and given the nature of the disease and intensity of the battle, these are appointments you don’t want to miss. For example, my chemotherapy cycle required an infusion every third Friday. I had to record three rounds of steroid medication taken every six hours before each infusion. I had a scheduled blood test every Monday following infusion. Nausea started Sunday morning and lasted until Tuesday. Joint pain started Wednesday and lasted until Saturday. If I took the nausea medication about an hour before onset, symptoms often were minimal. Furthermore, if I started pain medication a couple of hours before onset, my pain was manageable. I used the alarm feature on my phone to warn me in advance. Plus, there was life to live, and the calendar helped me avoid conflicts between my cancer treatment schedule and my life events schedule.
    Step 10 – Choose to live
    When asked about my cancer experience, I often tell those in treatment that cancer is a disease of life or death. I believe if you choose treatment, you are choosing life. And if you choose to live, do something with the life you are given. The “something” will be different for each of us, but doing whatever you enjoy or find fulfilling is so important. If you enjoyed an activity before diagnosis, do it afterward. Look at yourself in the mirror every morning. If you don’t see an expiration date stamped on your forehead, then enjoy the day and look forward to the next! Oh, by the way, your hair will grow back! Baldness is a beautiful badge of courage.
    Stay the course.
  64. Thanks
    Tom Galli got a reaction from Daria for a blog entry, 10 Steps to Surviving Lung Cancer from a Survivor   
    MY STEPS TO SURVIVING A LUNG CANCER DIAGNOSIS
    Step 1 – Invest in sophisticated diagnosics before diagnosis
    If you smoke, were a long-term smoker, or are in an occupation that exposes you to carcinogenic toxins (asbestos removal, auto mechanic, painter, etc.), I suggest getting a computed tomography (CT) scan, often called a CAT scan, of the chest once a year. Insurance now covers it and CT will detect tumors far earlier than a chest x-ray. Early detection of small tumors dramatically enhances your survival chances. I had a chest x-ray in January 2004 and was diagnosed with stage 3b, non-small cell lung cancer the following month. The tumor hadn’t shown on the x-ray; but at diagnosis, it was almost 3 inches long and ½ inch in diameter. The only symptom I had was coughing up blood the day before diagnosis. Learn more about early CT screening.
    Step 2 – Choose a good general practitioner 
    Your general practitioner may be the manager of your lung cancer treatment. The GP likely will pick your cancer team and may need to do a little arm-twisting to get things moving. Therefore, there can be great benefits to having a GP who is seasoned and well known in the medical community. I prefer doctors of osteopathic medicine to medical doctors. I’ve found that in my experience the former treat people, not patients. I believe a good physician shows kindness, consideration, and compassion toward those in his or her care. These characteristics are essential. Be sure you know your GP and your GP knows you. Such knowledge and trust will give you a survival edge. There are great health care professionals out there.
    Step 3 – Ensure your oncologist is a physician
    A doctor has a degree in medicine and a license to practice. A physician is devoted to restoring, maintaining, and promoting your good health. My physician oncologist does a complete examination (looks in eyes, nose, and throat, checks pulse in the extremities, checks reflexes, listens to breathing and heart rate) every visit. He reviews and explains all test results and asks how I feel. He looks at me as I speak, and he listens and makes notes on what I say. He carefully explains medical treatment alternatives that may arrest the disease, and together we choose each next step. He never rushes consultations and, consequently, often is late to scheduled appointments. Because his tardiness results from spending time with those he treats, I know he cares about me and every other patient. These are some characteristics your physician oncologist should possess.
    Step 4 – Learn about your disease
    At diagnosis, I had no idea what lung cancer was. Moreover, I didn’t know what an oncologist did, nor could I spell the word! After diagnosis, I read everything I could find about the disease; a good resource is the www.LUNGevity.org website. Then I read medical journals, government reports, research papers, and studies. I made notes about things I didn’t understand and asked questions at my oncology consultations. My wife attended every consultation, procedure, and test to ensure every question was asked and answered, and that we understood the answers. You need to know about type, stage, statistics, radiation, diagnostics, chemotherapy, side effects, surgical options, and so much more. Your chances of survival are improved if you are informed enough to ask highly perceptive questions.
    Step 5 – Acquire a sanguine attitude quickly
    Cancer is a disease of death; lung cancer kills more than all other cancers. Your attitude toward treatment is, I believe, essential to survival. When you acquire a sanguine attitude, your treatment team will notice your optimism. They will enjoy interacting with you; they will care about you. I strongly suggest you read Stephen Jay Gould’s essay “The Median Isn’t the Message” to help you understand survival statistics and find optimism about what appear to be bleak probability of survival projections. Join a cancer blog or messageboard. I am a member of several where I can broadcast my complaints and protestations to people who understand and have useful advice for coping. Find cancer support groups and join one. Most people who treat you have no idea how you are feeling. But survivors in cancer support groups understand; they know how you feel—you’ll fit right in!
    Step 6 – Any port in a storm
    There is no such thing as “a little stick!” During procedures and treatment, almost everyone will attempt to gain access to your veins with an intravenous device of some type. All such intrusions are uncomfortable, and unless the practitioner is good and lucky he or she will miss more often than not. If your treatment involves intravenously administered chemotherapy, you likely will get stuck at least once a week. A good way to avoid discomfort and frustration is to ask for a port. Installation involves simple, low-risk surgery. Once in place, you need to keep the area clean and exercise precautions when bathing—but access to your veins is no longer a storm but a port in a storm!
    Step 7 – Don’t believe the miracle cure
    The consequences of a lung cancer diagnosis are frightening. For most, it will be your first serious encounter with the prospect of death. When you type “lung cancer” into Google, you will be bombarded by advertisement that promises miracle cure at considerable expense. There is no such thing as a miracle cure! Before you invest time (now precious) investigating one of these “too good to be true” remedies, check it out on www.quackwatch.org and discuss it with your physician. Oncology is a medical science. Procedures, drugs, and protocols are tested using scientific methods that are published and reviewed by peers and regulating organizations. When science-based breakthroughs are discovered, they are broadcast very quickly throughout the practitioner community.Read about Steve Jobs—one of the smartest technologists and businessmen the world has ever known—who delayed his cancer treatment.
    Step 8 – Don’t try to tough it out
    I am a retired soldier and believed I was man enough to handle almost anything. Cancer proved to be the “anything” I could not handle! I suffered a long time trying to tough it out before I admitted I was depressed. My physician’s response: “Of course you are depressed—how could you not be?” He prescribed appropriate medication, arranged consultations with a psychologist, and suggested I attend support groups. Unless you are tougher than I, you will experience depression. Admit it and accept help. Here are some other things you might try. Ask for the “freeze spray” before an IV is used. If claustrophobic, get a script for Xanax and take it shortly before scans. Even in summer, wear warm clothing to diagnostic and infusion sessions. Some areas where these take place are kept very cold. Many treatment centers have volunteers—engage one in conversation. Many are survivors or caregivers and have a wealth of helpful information. During consultations, I was so frightened I couldn’t rationally ask questions about results or next steps, and I certainly couldn’t remember what was said. Consequently, I never go alone to a consultation. I suggest if you can, always have someone with you too.
    Step 9 – Become a calendar maniac
    If you have a smartphone with a calendar application, become an expert in its use. If not, keep a paper “cancer calendar” to record information. Your life after diagnosis will likely become filled with scheduled appointments, and given the nature of the disease and intensity of the battle, these are appointments you don’t want to miss. For example, my chemotherapy cycle required an infusion every third Friday. I had to record three rounds of steroid medication taken every six hours before each infusion. I had a scheduled blood test every Monday following infusion. Nausea started Sunday morning and lasted until Tuesday. Joint pain started Wednesday and lasted until Saturday. If I took the nausea medication about an hour before onset, symptoms often were minimal. Furthermore, if I started pain medication a couple of hours before onset, my pain was manageable. I used the alarm feature on my phone to warn me in advance. Plus, there was life to live, and the calendar helped me avoid conflicts between my cancer treatment schedule and my life events schedule.
    Step 10 – Choose to live
    When asked about my cancer experience, I often tell those in treatment that cancer is a disease of life or death. I believe if you choose treatment, you are choosing life. And if you choose to live, do something with the life you are given. The “something” will be different for each of us, but doing whatever you enjoy or find fulfilling is so important. If you enjoyed an activity before diagnosis, do it afterward. Look at yourself in the mirror every morning. If you don’t see an expiration date stamped on your forehead, then enjoy the day and look forward to the next! Oh, by the way, your hair will grow back! Baldness is a beautiful badge of courage.
    Stay the course.
  65. Like
    Tom Galli got a reaction from MarieE for a blog entry, 10 Steps to Surviving Lung Cancer from a Survivor   
    MY STEPS TO SURVIVING A LUNG CANCER DIAGNOSIS
    Step 1 – Invest in sophisticated diagnosics before diagnosis
    If you smoke, were a long-term smoker, or are in an occupation that exposes you to carcinogenic toxins (asbestos removal, auto mechanic, painter, etc.), I suggest getting a computed tomography (CT) scan, often called a CAT scan, of the chest once a year. Insurance now covers it and CT will detect tumors far earlier than a chest x-ray. Early detection of small tumors dramatically enhances your survival chances. I had a chest x-ray in January 2004 and was diagnosed with stage 3b, non-small cell lung cancer the following month. The tumor hadn’t shown on the x-ray; but at diagnosis, it was almost 3 inches long and ½ inch in diameter. The only symptom I had was coughing up blood the day before diagnosis. Learn more about early CT screening.
    Step 2 – Choose a good general practitioner 
    Your general practitioner may be the manager of your lung cancer treatment. The GP likely will pick your cancer team and may need to do a little arm-twisting to get things moving. Therefore, there can be great benefits to having a GP who is seasoned and well known in the medical community. I prefer doctors of osteopathic medicine to medical doctors. I’ve found that in my experience the former treat people, not patients. I believe a good physician shows kindness, consideration, and compassion toward those in his or her care. These characteristics are essential. Be sure you know your GP and your GP knows you. Such knowledge and trust will give you a survival edge. There are great health care professionals out there.
    Step 3 – Ensure your oncologist is a physician
    A doctor has a degree in medicine and a license to practice. A physician is devoted to restoring, maintaining, and promoting your good health. My physician oncologist does a complete examination (looks in eyes, nose, and throat, checks pulse in the extremities, checks reflexes, listens to breathing and heart rate) every visit. He reviews and explains all test results and asks how I feel. He looks at me as I speak, and he listens and makes notes on what I say. He carefully explains medical treatment alternatives that may arrest the disease, and together we choose each next step. He never rushes consultations and, consequently, often is late to scheduled appointments. Because his tardiness results from spending time with those he treats, I know he cares about me and every other patient. These are some characteristics your physician oncologist should possess.
    Step 4 – Learn about your disease
    At diagnosis, I had no idea what lung cancer was. Moreover, I didn’t know what an oncologist did, nor could I spell the word! After diagnosis, I read everything I could find about the disease; a good resource is the www.LUNGevity.org website. Then I read medical journals, government reports, research papers, and studies. I made notes about things I didn’t understand and asked questions at my oncology consultations. My wife attended every consultation, procedure, and test to ensure every question was asked and answered, and that we understood the answers. You need to know about type, stage, statistics, radiation, diagnostics, chemotherapy, side effects, surgical options, and so much more. Your chances of survival are improved if you are informed enough to ask highly perceptive questions.
    Step 5 – Acquire a sanguine attitude quickly
    Cancer is a disease of death; lung cancer kills more than all other cancers. Your attitude toward treatment is, I believe, essential to survival. When you acquire a sanguine attitude, your treatment team will notice your optimism. They will enjoy interacting with you; they will care about you. I strongly suggest you read Stephen Jay Gould’s essay “The Median Isn’t the Message” to help you understand survival statistics and find optimism about what appear to be bleak probability of survival projections. Join a cancer blog or messageboard. I am a member of several where I can broadcast my complaints and protestations to people who understand and have useful advice for coping. Find cancer support groups and join one. Most people who treat you have no idea how you are feeling. But survivors in cancer support groups understand; they know how you feel—you’ll fit right in!
    Step 6 – Any port in a storm
    There is no such thing as “a little stick!” During procedures and treatment, almost everyone will attempt to gain access to your veins with an intravenous device of some type. All such intrusions are uncomfortable, and unless the practitioner is good and lucky he or she will miss more often than not. If your treatment involves intravenously administered chemotherapy, you likely will get stuck at least once a week. A good way to avoid discomfort and frustration is to ask for a port. Installation involves simple, low-risk surgery. Once in place, you need to keep the area clean and exercise precautions when bathing—but access to your veins is no longer a storm but a port in a storm!
    Step 7 – Don’t believe the miracle cure
    The consequences of a lung cancer diagnosis are frightening. For most, it will be your first serious encounter with the prospect of death. When you type “lung cancer” into Google, you will be bombarded by advertisement that promises miracle cure at considerable expense. There is no such thing as a miracle cure! Before you invest time (now precious) investigating one of these “too good to be true” remedies, check it out on www.quackwatch.org and discuss it with your physician. Oncology is a medical science. Procedures, drugs, and protocols are tested using scientific methods that are published and reviewed by peers and regulating organizations. When science-based breakthroughs are discovered, they are broadcast very quickly throughout the practitioner community.Read about Steve Jobs—one of the smartest technologists and businessmen the world has ever known—who delayed his cancer treatment.
    Step 8 – Don’t try to tough it out
    I am a retired soldier and believed I was man enough to handle almost anything. Cancer proved to be the “anything” I could not handle! I suffered a long time trying to tough it out before I admitted I was depressed. My physician’s response: “Of course you are depressed—how could you not be?” He prescribed appropriate medication, arranged consultations with a psychologist, and suggested I attend support groups. Unless you are tougher than I, you will experience depression. Admit it and accept help. Here are some other things you might try. Ask for the “freeze spray” before an IV is used. If claustrophobic, get a script for Xanax and take it shortly before scans. Even in summer, wear warm clothing to diagnostic and infusion sessions. Some areas where these take place are kept very cold. Many treatment centers have volunteers—engage one in conversation. Many are survivors or caregivers and have a wealth of helpful information. During consultations, I was so frightened I couldn’t rationally ask questions about results or next steps, and I certainly couldn’t remember what was said. Consequently, I never go alone to a consultation. I suggest if you can, always have someone with you too.
    Step 9 – Become a calendar maniac
    If you have a smartphone with a calendar application, become an expert in its use. If not, keep a paper “cancer calendar” to record information. Your life after diagnosis will likely become filled with scheduled appointments, and given the nature of the disease and intensity of the battle, these are appointments you don’t want to miss. For example, my chemotherapy cycle required an infusion every third Friday. I had to record three rounds of steroid medication taken every six hours before each infusion. I had a scheduled blood test every Monday following infusion. Nausea started Sunday morning and lasted until Tuesday. Joint pain started Wednesday and lasted until Saturday. If I took the nausea medication about an hour before onset, symptoms often were minimal. Furthermore, if I started pain medication a couple of hours before onset, my pain was manageable. I used the alarm feature on my phone to warn me in advance. Plus, there was life to live, and the calendar helped me avoid conflicts between my cancer treatment schedule and my life events schedule.
    Step 10 – Choose to live
    When asked about my cancer experience, I often tell those in treatment that cancer is a disease of life or death. I believe if you choose treatment, you are choosing life. And if you choose to live, do something with the life you are given. The “something” will be different for each of us, but doing whatever you enjoy or find fulfilling is so important. If you enjoyed an activity before diagnosis, do it afterward. Look at yourself in the mirror every morning. If you don’t see an expiration date stamped on your forehead, then enjoy the day and look forward to the next! Oh, by the way, your hair will grow back! Baldness is a beautiful badge of courage.
    Stay the course.
  66. Like
    Tom Galli got a reaction from jack14 for a blog entry, 10 Steps to Surviving Lung Cancer from a Survivor   
    MY STEPS TO SURVIVING A LUNG CANCER DIAGNOSIS
    Step 1 – Invest in sophisticated diagnosics before diagnosis
    If you smoke, were a long-term smoker, or are in an occupation that exposes you to carcinogenic toxins (asbestos removal, auto mechanic, painter, etc.), I suggest getting a computed tomography (CT) scan, often called a CAT scan, of the chest once a year. Insurance now covers it and CT will detect tumors far earlier than a chest x-ray. Early detection of small tumors dramatically enhances your survival chances. I had a chest x-ray in January 2004 and was diagnosed with stage 3b, non-small cell lung cancer the following month. The tumor hadn’t shown on the x-ray; but at diagnosis, it was almost 3 inches long and ½ inch in diameter. The only symptom I had was coughing up blood the day before diagnosis. Learn more about early CT screening.
    Step 2 – Choose a good general practitioner 
    Your general practitioner may be the manager of your lung cancer treatment. The GP likely will pick your cancer team and may need to do a little arm-twisting to get things moving. Therefore, there can be great benefits to having a GP who is seasoned and well known in the medical community. I prefer doctors of osteopathic medicine to medical doctors. I’ve found that in my experience the former treat people, not patients. I believe a good physician shows kindness, consideration, and compassion toward those in his or her care. These characteristics are essential. Be sure you know your GP and your GP knows you. Such knowledge and trust will give you a survival edge. There are great health care professionals out there.
    Step 3 – Ensure your oncologist is a physician
    A doctor has a degree in medicine and a license to practice. A physician is devoted to restoring, maintaining, and promoting your good health. My physician oncologist does a complete examination (looks in eyes, nose, and throat, checks pulse in the extremities, checks reflexes, listens to breathing and heart rate) every visit. He reviews and explains all test results and asks how I feel. He looks at me as I speak, and he listens and makes notes on what I say. He carefully explains medical treatment alternatives that may arrest the disease, and together we choose each next step. He never rushes consultations and, consequently, often is late to scheduled appointments. Because his tardiness results from spending time with those he treats, I know he cares about me and every other patient. These are some characteristics your physician oncologist should possess.
    Step 4 – Learn about your disease
    At diagnosis, I had no idea what lung cancer was. Moreover, I didn’t know what an oncologist did, nor could I spell the word! After diagnosis, I read everything I could find about the disease; a good resource is the www.LUNGevity.org website. Then I read medical journals, government reports, research papers, and studies. I made notes about things I didn’t understand and asked questions at my oncology consultations. My wife attended every consultation, procedure, and test to ensure every question was asked and answered, and that we understood the answers. You need to know about type, stage, statistics, radiation, diagnostics, chemotherapy, side effects, surgical options, and so much more. Your chances of survival are improved if you are informed enough to ask highly perceptive questions.
    Step 5 – Acquire a sanguine attitude quickly
    Cancer is a disease of death; lung cancer kills more than all other cancers. Your attitude toward treatment is, I believe, essential to survival. When you acquire a sanguine attitude, your treatment team will notice your optimism. They will enjoy interacting with you; they will care about you. I strongly suggest you read Stephen Jay Gould’s essay “The Median Isn’t the Message” to help you understand survival statistics and find optimism about what appear to be bleak probability of survival projections. Join a cancer blog or messageboard. I am a member of several where I can broadcast my complaints and protestations to people who understand and have useful advice for coping. Find cancer support groups and join one. Most people who treat you have no idea how you are feeling. But survivors in cancer support groups understand; they know how you feel—you’ll fit right in!
    Step 6 – Any port in a storm
    There is no such thing as “a little stick!” During procedures and treatment, almost everyone will attempt to gain access to your veins with an intravenous device of some type. All such intrusions are uncomfortable, and unless the practitioner is good and lucky he or she will miss more often than not. If your treatment involves intravenously administered chemotherapy, you likely will get stuck at least once a week. A good way to avoid discomfort and frustration is to ask for a port. Installation involves simple, low-risk surgery. Once in place, you need to keep the area clean and exercise precautions when bathing—but access to your veins is no longer a storm but a port in a storm!
    Step 7 – Don’t believe the miracle cure
    The consequences of a lung cancer diagnosis are frightening. For most, it will be your first serious encounter with the prospect of death. When you type “lung cancer” into Google, you will be bombarded by advertisement that promises miracle cure at considerable expense. There is no such thing as a miracle cure! Before you invest time (now precious) investigating one of these “too good to be true” remedies, check it out on www.quackwatch.org and discuss it with your physician. Oncology is a medical science. Procedures, drugs, and protocols are tested using scientific methods that are published and reviewed by peers and regulating organizations. When science-based breakthroughs are discovered, they are broadcast very quickly throughout the practitioner community.Read about Steve Jobs—one of the smartest technologists and businessmen the world has ever known—who delayed his cancer treatment.
    Step 8 – Don’t try to tough it out
    I am a retired soldier and believed I was man enough to handle almost anything. Cancer proved to be the “anything” I could not handle! I suffered a long time trying to tough it out before I admitted I was depressed. My physician’s response: “Of course you are depressed—how could you not be?” He prescribed appropriate medication, arranged consultations with a psychologist, and suggested I attend support groups. Unless you are tougher than I, you will experience depression. Admit it and accept help. Here are some other things you might try. Ask for the “freeze spray” before an IV is used. If claustrophobic, get a script for Xanax and take it shortly before scans. Even in summer, wear warm clothing to diagnostic and infusion sessions. Some areas where these take place are kept very cold. Many treatment centers have volunteers—engage one in conversation. Many are survivors or caregivers and have a wealth of helpful information. During consultations, I was so frightened I couldn’t rationally ask questions about results or next steps, and I certainly couldn’t remember what was said. Consequently, I never go alone to a consultation. I suggest if you can, always have someone with you too.
    Step 9 – Become a calendar maniac
    If you have a smartphone with a calendar application, become an expert in its use. If not, keep a paper “cancer calendar” to record information. Your life after diagnosis will likely become filled with scheduled appointments, and given the nature of the disease and intensity of the battle, these are appointments you don’t want to miss. For example, my chemotherapy cycle required an infusion every third Friday. I had to record three rounds of steroid medication taken every six hours before each infusion. I had a scheduled blood test every Monday following infusion. Nausea started Sunday morning and lasted until Tuesday. Joint pain started Wednesday and lasted until Saturday. If I took the nausea medication about an hour before onset, symptoms often were minimal. Furthermore, if I started pain medication a couple of hours before onset, my pain was manageable. I used the alarm feature on my phone to warn me in advance. Plus, there was life to live, and the calendar helped me avoid conflicts between my cancer treatment schedule and my life events schedule.
    Step 10 – Choose to live
    When asked about my cancer experience, I often tell those in treatment that cancer is a disease of life or death. I believe if you choose treatment, you are choosing life. And if you choose to live, do something with the life you are given. The “something” will be different for each of us, but doing whatever you enjoy or find fulfilling is so important. If you enjoyed an activity before diagnosis, do it afterward. Look at yourself in the mirror every morning. If you don’t see an expiration date stamped on your forehead, then enjoy the day and look forward to the next! Oh, by the way, your hair will grow back! Baldness is a beautiful badge of courage.
    Stay the course.
  67. Like
    Tom Galli got a reaction from Lisa Haines for a blog entry, 10 Steps to Surviving Lung Cancer from a Survivor   
    MY STEPS TO SURVIVING A LUNG CANCER DIAGNOSIS
    Step 1 – Invest in sophisticated diagnosics before diagnosis
    If you smoke, were a long-term smoker, or are in an occupation that exposes you to carcinogenic toxins (asbestos removal, auto mechanic, painter, etc.), I suggest getting a computed tomography (CT) scan, often called a CAT scan, of the chest once a year. Insurance now covers it and CT will detect tumors far earlier than a chest x-ray. Early detection of small tumors dramatically enhances your survival chances. I had a chest x-ray in January 2004 and was diagnosed with stage 3b, non-small cell lung cancer the following month. The tumor hadn’t shown on the x-ray; but at diagnosis, it was almost 3 inches long and ½ inch in diameter. The only symptom I had was coughing up blood the day before diagnosis. Learn more about early CT screening.
    Step 2 – Choose a good general practitioner 
    Your general practitioner may be the manager of your lung cancer treatment. The GP likely will pick your cancer team and may need to do a little arm-twisting to get things moving. Therefore, there can be great benefits to having a GP who is seasoned and well known in the medical community. I prefer doctors of osteopathic medicine to medical doctors. I’ve found that in my experience the former treat people, not patients. I believe a good physician shows kindness, consideration, and compassion toward those in his or her care. These characteristics are essential. Be sure you know your GP and your GP knows you. Such knowledge and trust will give you a survival edge. There are great health care professionals out there.
    Step 3 – Ensure your oncologist is a physician
    A doctor has a degree in medicine and a license to practice. A physician is devoted to restoring, maintaining, and promoting your good health. My physician oncologist does a complete examination (looks in eyes, nose, and throat, checks pulse in the extremities, checks reflexes, listens to breathing and heart rate) every visit. He reviews and explains all test results and asks how I feel. He looks at me as I speak, and he listens and makes notes on what I say. He carefully explains medical treatment alternatives that may arrest the disease, and together we choose each next step. He never rushes consultations and, consequently, often is late to scheduled appointments. Because his tardiness results from spending time with those he treats, I know he cares about me and every other patient. These are some characteristics your physician oncologist should possess.
    Step 4 – Learn about your disease
    At diagnosis, I had no idea what lung cancer was. Moreover, I didn’t know what an oncologist did, nor could I spell the word! After diagnosis, I read everything I could find about the disease; a good resource is the www.LUNGevity.org website. Then I read medical journals, government reports, research papers, and studies. I made notes about things I didn’t understand and asked questions at my oncology consultations. My wife attended every consultation, procedure, and test to ensure every question was asked and answered, and that we understood the answers. You need to know about type, stage, statistics, radiation, diagnostics, chemotherapy, side effects, surgical options, and so much more. Your chances of survival are improved if you are informed enough to ask highly perceptive questions.
    Step 5 – Acquire a sanguine attitude quickly
    Cancer is a disease of death; lung cancer kills more than all other cancers. Your attitude toward treatment is, I believe, essential to survival. When you acquire a sanguine attitude, your treatment team will notice your optimism. They will enjoy interacting with you; they will care about you. I strongly suggest you read Stephen Jay Gould’s essay “The Median Isn’t the Message” to help you understand survival statistics and find optimism about what appear to be bleak probability of survival projections. Join a cancer blog or messageboard. I am a member of several where I can broadcast my complaints and protestations to people who understand and have useful advice for coping. Find cancer support groups and join one. Most people who treat you have no idea how you are feeling. But survivors in cancer support groups understand; they know how you feel—you’ll fit right in!
    Step 6 – Any port in a storm
    There is no such thing as “a little stick!” During procedures and treatment, almost everyone will attempt to gain access to your veins with an intravenous device of some type. All such intrusions are uncomfortable, and unless the practitioner is good and lucky he or she will miss more often than not. If your treatment involves intravenously administered chemotherapy, you likely will get stuck at least once a week. A good way to avoid discomfort and frustration is to ask for a port. Installation involves simple, low-risk surgery. Once in place, you need to keep the area clean and exercise precautions when bathing—but access to your veins is no longer a storm but a port in a storm!
    Step 7 – Don’t believe the miracle cure
    The consequences of a lung cancer diagnosis are frightening. For most, it will be your first serious encounter with the prospect of death. When you type “lung cancer” into Google, you will be bombarded by advertisement that promises miracle cure at considerable expense. There is no such thing as a miracle cure! Before you invest time (now precious) investigating one of these “too good to be true” remedies, check it out on www.quackwatch.org and discuss it with your physician. Oncology is a medical science. Procedures, drugs, and protocols are tested using scientific methods that are published and reviewed by peers and regulating organizations. When science-based breakthroughs are discovered, they are broadcast very quickly throughout the practitioner community.Read about Steve Jobs—one of the smartest technologists and businessmen the world has ever known—who delayed his cancer treatment.
    Step 8 – Don’t try to tough it out
    I am a retired soldier and believed I was man enough to handle almost anything. Cancer proved to be the “anything” I could not handle! I suffered a long time trying to tough it out before I admitted I was depressed. My physician’s response: “Of course you are depressed—how could you not be?” He prescribed appropriate medication, arranged consultations with a psychologist, and suggested I attend support groups. Unless you are tougher than I, you will experience depression. Admit it and accept help. Here are some other things you might try. Ask for the “freeze spray” before an IV is used. If claustrophobic, get a script for Xanax and take it shortly before scans. Even in summer, wear warm clothing to diagnostic and infusion sessions. Some areas where these take place are kept very cold. Many treatment centers have volunteers—engage one in conversation. Many are survivors or caregivers and have a wealth of helpful information. During consultations, I was so frightened I couldn’t rationally ask questions about results or next steps, and I certainly couldn’t remember what was said. Consequently, I never go alone to a consultation. I suggest if you can, always have someone with you too.
    Step 9 – Become a calendar maniac
    If you have a smartphone with a calendar application, become an expert in its use. If not, keep a paper “cancer calendar” to record information. Your life after diagnosis will likely become filled with scheduled appointments, and given the nature of the disease and intensity of the battle, these are appointments you don’t want to miss. For example, my chemotherapy cycle required an infusion every third Friday. I had to record three rounds of steroid medication taken every six hours before each infusion. I had a scheduled blood test every Monday following infusion. Nausea started Sunday morning and lasted until Tuesday. Joint pain started Wednesday and lasted until Saturday. If I took the nausea medication about an hour before onset, symptoms often were minimal. Furthermore, if I started pain medication a couple of hours before onset, my pain was manageable. I used the alarm feature on my phone to warn me in advance. Plus, there was life to live, and the calendar helped me avoid conflicts between my cancer treatment schedule and my life events schedule.
    Step 10 – Choose to live
    When asked about my cancer experience, I often tell those in treatment that cancer is a disease of life or death. I believe if you choose treatment, you are choosing life. And if you choose to live, do something with the life you are given. The “something” will be different for each of us, but doing whatever you enjoy or find fulfilling is so important. If you enjoyed an activity before diagnosis, do it afterward. Look at yourself in the mirror every morning. If you don’t see an expiration date stamped on your forehead, then enjoy the day and look forward to the next! Oh, by the way, your hair will grow back! Baldness is a beautiful badge of courage.
    Stay the course.
  68. Like
    Tom Galli got a reaction from Claudia for a blog entry, Hope Is A Good Thing   
    Red, in white shirt and loose thin-black tie and sweating in Maine’s summer heat, is leaning on a rock-wall fence.  He’s just opened Andy’s letter found under the black obsidian rock.  In the background we hear Andy reading his evocative description of hope: “Remember Red, hope is a good thing, maybe the best of things and no good thing ever dies.” The movie Shawshank Redemption is a powerful story about hope and life with a message that should resonate with every lung cancer survivor.
    I watched the movie the other day and made the connection.  Andy was imprisoned for two life sentences with no possibility of parole.  He was wrongly convicted of murder and throughout the story of his day-to-day life in prison, everyone tells him “hope is a dangerous thing.”  On escaping, Andy proclaims that hope is “maybe the best of things.”  The movie story line is exactly parallel to the plight of the late-stage diagnosed lung cancer patient ⎯- an unforgiving disease with hope as the most effective means of avoiding consequences.
    For lung cancer, hope is not a medical remedy.  While new lung cancer treatments are emerging more frequently now, basic research funding to diagnose and treat lung cancer lags other cancers.  Perhaps the pace may pick up, one hopes.  Perhaps a treatment may emerge just in time to save a life, one hopes.  Perhaps a miracle remission occurs, one hopes.  Hope may not be a medical remedy but, for many of us, it is our only effective medicament.  And, in my case, hope is “maybe the best of things.” 
    Recall the story line of Shawshank.  Andy’s future is confinement in a mind numbing institution, but he makes a choice to live in a different reality and works diligently, every day, on a novel escape plan. He makes a conscious decision to live.  He embraces the hope of escape against all odds.  Andy’s poignant characterization about life reveals his reasoning: “I guess it comes down to a simple choice, really.  Get busy living or get busy dying.”  Exactly!
    Sometimes in the heat of lung cancer treatment, we forget its purpose ⎯- extended life.  No one knows how long but life for most is extended. So what do we do with the extension?  Re-read Andy’s characterization.
    We long for a period of life extending into satisfying old age.  But most without lung cancer do not dwell on the amount remaining on account.  Lung cancer patients take careful measure of the balance.  But, measure for what end?  I believe, if one chooses treatment, then one chooses life.  Rather than dwell on the remaining balance, focus on doing something you enjoy everyday.  I suggest a survivor forget the past, declare the future irrelevant, and live in the day.
    “Get busy living or get busy dying.”
    Stay the course.
  69. Thanks
    Tom Galli got a reaction from G.A.M. for a blog entry, 10 Steps to Surviving Lung Cancer from a Survivor   
    MY STEPS TO SURVIVING A LUNG CANCER DIAGNOSIS
    Step 1 – Invest in sophisticated diagnosics before diagnosis
    If you smoke, were a long-term smoker, or are in an occupation that exposes you to carcinogenic toxins (asbestos removal, auto mechanic, painter, etc.), I suggest getting a computed tomography (CT) scan, often called a CAT scan, of the chest once a year. Insurance now covers it and CT will detect tumors far earlier than a chest x-ray. Early detection of small tumors dramatically enhances your survival chances. I had a chest x-ray in January 2004 and was diagnosed with stage 3b, non-small cell lung cancer the following month. The tumor hadn’t shown on the x-ray; but at diagnosis, it was almost 3 inches long and ½ inch in diameter. The only symptom I had was coughing up blood the day before diagnosis. Learn more about early CT screening.
    Step 2 – Choose a good general practitioner 
    Your general practitioner may be the manager of your lung cancer treatment. The GP likely will pick your cancer team and may need to do a little arm-twisting to get things moving. Therefore, there can be great benefits to having a GP who is seasoned and well known in the medical community. I prefer doctors of osteopathic medicine to medical doctors. I’ve found that in my experience the former treat people, not patients. I believe a good physician shows kindness, consideration, and compassion toward those in his or her care. These characteristics are essential. Be sure you know your GP and your GP knows you. Such knowledge and trust will give you a survival edge. There are great health care professionals out there.
    Step 3 – Ensure your oncologist is a physician
    A doctor has a degree in medicine and a license to practice. A physician is devoted to restoring, maintaining, and promoting your good health. My physician oncologist does a complete examination (looks in eyes, nose, and throat, checks pulse in the extremities, checks reflexes, listens to breathing and heart rate) every visit. He reviews and explains all test results and asks how I feel. He looks at me as I speak, and he listens and makes notes on what I say. He carefully explains medical treatment alternatives that may arrest the disease, and together we choose each next step. He never rushes consultations and, consequently, often is late to scheduled appointments. Because his tardiness results from spending time with those he treats, I know he cares about me and every other patient. These are some characteristics your physician oncologist should possess.
    Step 4 – Learn about your disease
    At diagnosis, I had no idea what lung cancer was. Moreover, I didn’t know what an oncologist did, nor could I spell the word! After diagnosis, I read everything I could find about the disease; a good resource is the www.LUNGevity.org website. Then I read medical journals, government reports, research papers, and studies. I made notes about things I didn’t understand and asked questions at my oncology consultations. My wife attended every consultation, procedure, and test to ensure every question was asked and answered, and that we understood the answers. You need to know about type, stage, statistics, radiation, diagnostics, chemotherapy, side effects, surgical options, and so much more. Your chances of survival are improved if you are informed enough to ask highly perceptive questions.
    Step 5 – Acquire a sanguine attitude quickly
    Cancer is a disease of death; lung cancer kills more than all other cancers. Your attitude toward treatment is, I believe, essential to survival. When you acquire a sanguine attitude, your treatment team will notice your optimism. They will enjoy interacting with you; they will care about you. I strongly suggest you read Stephen Jay Gould’s essay “The Median Isn’t the Message” to help you understand survival statistics and find optimism about what appear to be bleak probability of survival projections. Join a cancer blog or messageboard. I am a member of several where I can broadcast my complaints and protestations to people who understand and have useful advice for coping. Find cancer support groups and join one. Most people who treat you have no idea how you are feeling. But survivors in cancer support groups understand; they know how you feel—you’ll fit right in!
    Step 6 – Any port in a storm
    There is no such thing as “a little stick!” During procedures and treatment, almost everyone will attempt to gain access to your veins with an intravenous device of some type. All such intrusions are uncomfortable, and unless the practitioner is good and lucky he or she will miss more often than not. If your treatment involves intravenously administered chemotherapy, you likely will get stuck at least once a week. A good way to avoid discomfort and frustration is to ask for a port. Installation involves simple, low-risk surgery. Once in place, you need to keep the area clean and exercise precautions when bathing—but access to your veins is no longer a storm but a port in a storm!
    Step 7 – Don’t believe the miracle cure
    The consequences of a lung cancer diagnosis are frightening. For most, it will be your first serious encounter with the prospect of death. When you type “lung cancer” into Google, you will be bombarded by advertisement that promises miracle cure at considerable expense. There is no such thing as a miracle cure! Before you invest time (now precious) investigating one of these “too good to be true” remedies, check it out on www.quackwatch.org and discuss it with your physician. Oncology is a medical science. Procedures, drugs, and protocols are tested using scientific methods that are published and reviewed by peers and regulating organizations. When science-based breakthroughs are discovered, they are broadcast very quickly throughout the practitioner community.Read about Steve Jobs—one of the smartest technologists and businessmen the world has ever known—who delayed his cancer treatment.
    Step 8 – Don’t try to tough it out
    I am a retired soldier and believed I was man enough to handle almost anything. Cancer proved to be the “anything” I could not handle! I suffered a long time trying to tough it out before I admitted I was depressed. My physician’s response: “Of course you are depressed—how could you not be?” He prescribed appropriate medication, arranged consultations with a psychologist, and suggested I attend support groups. Unless you are tougher than I, you will experience depression. Admit it and accept help. Here are some other things you might try. Ask for the “freeze spray” before an IV is used. If claustrophobic, get a script for Xanax and take it shortly before scans. Even in summer, wear warm clothing to diagnostic and infusion sessions. Some areas where these take place are kept very cold. Many treatment centers have volunteers—engage one in conversation. Many are survivors or caregivers and have a wealth of helpful information. During consultations, I was so frightened I couldn’t rationally ask questions about results or next steps, and I certainly couldn’t remember what was said. Consequently, I never go alone to a consultation. I suggest if you can, always have someone with you too.
    Step 9 – Become a calendar maniac
    If you have a smartphone with a calendar application, become an expert in its use. If not, keep a paper “cancer calendar” to record information. Your life after diagnosis will likely become filled with scheduled appointments, and given the nature of the disease and intensity of the battle, these are appointments you don’t want to miss. For example, my chemotherapy cycle required an infusion every third Friday. I had to record three rounds of steroid medication taken every six hours before each infusion. I had a scheduled blood test every Monday following infusion. Nausea started Sunday morning and lasted until Tuesday. Joint pain started Wednesday and lasted until Saturday. If I took the nausea medication about an hour before onset, symptoms often were minimal. Furthermore, if I started pain medication a couple of hours before onset, my pain was manageable. I used the alarm feature on my phone to warn me in advance. Plus, there was life to live, and the calendar helped me avoid conflicts between my cancer treatment schedule and my life events schedule.
    Step 10 – Choose to live
    When asked about my cancer experience, I often tell those in treatment that cancer is a disease of life or death. I believe if you choose treatment, you are choosing life. And if you choose to live, do something with the life you are given. The “something” will be different for each of us, but doing whatever you enjoy or find fulfilling is so important. If you enjoyed an activity before diagnosis, do it afterward. Look at yourself in the mirror every morning. If you don’t see an expiration date stamped on your forehead, then enjoy the day and look forward to the next! Oh, by the way, your hair will grow back! Baldness is a beautiful badge of courage.
    Stay the course.
  70. Like
    Tom Galli got a reaction from TMC for a blog entry, 10 Steps to Surviving Lung Cancer from a Survivor   
    MY STEPS TO SURVIVING A LUNG CANCER DIAGNOSIS
    Step 1 – Invest in sophisticated diagnosics before diagnosis
    If you smoke, were a long-term smoker, or are in an occupation that exposes you to carcinogenic toxins (asbestos removal, auto mechanic, painter, etc.), I suggest getting a computed tomography (CT) scan, often called a CAT scan, of the chest once a year. Insurance now covers it and CT will detect tumors far earlier than a chest x-ray. Early detection of small tumors dramatically enhances your survival chances. I had a chest x-ray in January 2004 and was diagnosed with stage 3b, non-small cell lung cancer the following month. The tumor hadn’t shown on the x-ray; but at diagnosis, it was almost 3 inches long and ½ inch in diameter. The only symptom I had was coughing up blood the day before diagnosis. Learn more about early CT screening.
    Step 2 – Choose a good general practitioner 
    Your general practitioner may be the manager of your lung cancer treatment. The GP likely will pick your cancer team and may need to do a little arm-twisting to get things moving. Therefore, there can be great benefits to having a GP who is seasoned and well known in the medical community. I prefer doctors of osteopathic medicine to medical doctors. I’ve found that in my experience the former treat people, not patients. I believe a good physician shows kindness, consideration, and compassion toward those in his or her care. These characteristics are essential. Be sure you know your GP and your GP knows you. Such knowledge and trust will give you a survival edge. There are great health care professionals out there.
    Step 3 – Ensure your oncologist is a physician
    A doctor has a degree in medicine and a license to practice. A physician is devoted to restoring, maintaining, and promoting your good health. My physician oncologist does a complete examination (looks in eyes, nose, and throat, checks pulse in the extremities, checks reflexes, listens to breathing and heart rate) every visit. He reviews and explains all test results and asks how I feel. He looks at me as I speak, and he listens and makes notes on what I say. He carefully explains medical treatment alternatives that may arrest the disease, and together we choose each next step. He never rushes consultations and, consequently, often is late to scheduled appointments. Because his tardiness results from spending time with those he treats, I know he cares about me and every other patient. These are some characteristics your physician oncologist should possess.
    Step 4 – Learn about your disease
    At diagnosis, I had no idea what lung cancer was. Moreover, I didn’t know what an oncologist did, nor could I spell the word! After diagnosis, I read everything I could find about the disease; a good resource is the www.LUNGevity.org website. Then I read medical journals, government reports, research papers, and studies. I made notes about things I didn’t understand and asked questions at my oncology consultations. My wife attended every consultation, procedure, and test to ensure every question was asked and answered, and that we understood the answers. You need to know about type, stage, statistics, radiation, diagnostics, chemotherapy, side effects, surgical options, and so much more. Your chances of survival are improved if you are informed enough to ask highly perceptive questions.
    Step 5 – Acquire a sanguine attitude quickly
    Cancer is a disease of death; lung cancer kills more than all other cancers. Your attitude toward treatment is, I believe, essential to survival. When you acquire a sanguine attitude, your treatment team will notice your optimism. They will enjoy interacting with you; they will care about you. I strongly suggest you read Stephen Jay Gould’s essay “The Median Isn’t the Message” to help you understand survival statistics and find optimism about what appear to be bleak probability of survival projections. Join a cancer blog or messageboard. I am a member of several where I can broadcast my complaints and protestations to people who understand and have useful advice for coping. Find cancer support groups and join one. Most people who treat you have no idea how you are feeling. But survivors in cancer support groups understand; they know how you feel—you’ll fit right in!
    Step 6 – Any port in a storm
    There is no such thing as “a little stick!” During procedures and treatment, almost everyone will attempt to gain access to your veins with an intravenous device of some type. All such intrusions are uncomfortable, and unless the practitioner is good and lucky he or she will miss more often than not. If your treatment involves intravenously administered chemotherapy, you likely will get stuck at least once a week. A good way to avoid discomfort and frustration is to ask for a port. Installation involves simple, low-risk surgery. Once in place, you need to keep the area clean and exercise precautions when bathing—but access to your veins is no longer a storm but a port in a storm!
    Step 7 – Don’t believe the miracle cure
    The consequences of a lung cancer diagnosis are frightening. For most, it will be your first serious encounter with the prospect of death. When you type “lung cancer” into Google, you will be bombarded by advertisement that promises miracle cure at considerable expense. There is no such thing as a miracle cure! Before you invest time (now precious) investigating one of these “too good to be true” remedies, check it out on www.quackwatch.org and discuss it with your physician. Oncology is a medical science. Procedures, drugs, and protocols are tested using scientific methods that are published and reviewed by peers and regulating organizations. When science-based breakthroughs are discovered, they are broadcast very quickly throughout the practitioner community.Read about Steve Jobs—one of the smartest technologists and businessmen the world has ever known—who delayed his cancer treatment.
    Step 8 – Don’t try to tough it out
    I am a retired soldier and believed I was man enough to handle almost anything. Cancer proved to be the “anything” I could not handle! I suffered a long time trying to tough it out before I admitted I was depressed. My physician’s response: “Of course you are depressed—how could you not be?” He prescribed appropriate medication, arranged consultations with a psychologist, and suggested I attend support groups. Unless you are tougher than I, you will experience depression. Admit it and accept help. Here are some other things you might try. Ask for the “freeze spray” before an IV is used. If claustrophobic, get a script for Xanax and take it shortly before scans. Even in summer, wear warm clothing to diagnostic and infusion sessions. Some areas where these take place are kept very cold. Many treatment centers have volunteers—engage one in conversation. Many are survivors or caregivers and have a wealth of helpful information. During consultations, I was so frightened I couldn’t rationally ask questions about results or next steps, and I certainly couldn’t remember what was said. Consequently, I never go alone to a consultation. I suggest if you can, always have someone with you too.
    Step 9 – Become a calendar maniac
    If you have a smartphone with a calendar application, become an expert in its use. If not, keep a paper “cancer calendar” to record information. Your life after diagnosis will likely become filled with scheduled appointments, and given the nature of the disease and intensity of the battle, these are appointments you don’t want to miss. For example, my chemotherapy cycle required an infusion every third Friday. I had to record three rounds of steroid medication taken every six hours before each infusion. I had a scheduled blood test every Monday following infusion. Nausea started Sunday morning and lasted until Tuesday. Joint pain started Wednesday and lasted until Saturday. If I took the nausea medication about an hour before onset, symptoms often were minimal. Furthermore, if I started pain medication a couple of hours before onset, my pain was manageable. I used the alarm feature on my phone to warn me in advance. Plus, there was life to live, and the calendar helped me avoid conflicts between my cancer treatment schedule and my life events schedule.
    Step 10 – Choose to live
    When asked about my cancer experience, I often tell those in treatment that cancer is a disease of life or death. I believe if you choose treatment, you are choosing life. And if you choose to live, do something with the life you are given. The “something” will be different for each of us, but doing whatever you enjoy or find fulfilling is so important. If you enjoyed an activity before diagnosis, do it afterward. Look at yourself in the mirror every morning. If you don’t see an expiration date stamped on your forehead, then enjoy the day and look forward to the next! Oh, by the way, your hair will grow back! Baldness is a beautiful badge of courage.
    Stay the course.
  71. Thanks
    Tom Galli got a reaction from Major Tom for a blog entry, Uncertain Treatment Outcomes: A Baseball Model   
    Baseball is a game that requires patient players and fans. Like lung cancer treatment, there is a lot of waiting for something to happen. Also like lung cancer, the game is unpredictable. A single pitch can change the outcome of a game like a single cell can change the outcome of treatment. And like lung cancer, baseball has many uncertainties and these are defined by odds. The best hitters succeed a little better than one in three times; the best teams winning about six in ten games. Baseball players need to persevere against low odds of success to achieve victory. So do lung cancer patients.
    A lung cancer diagnosis is devastating. Recurrence after treatment is common and traumatizing. We ought to prepare for the distress of recurrence. Treatment, even for those diagnosed at early stage, is not likely to be a walk-off home run. I was not prepared for treatment failure. How common is recurrence?
    A National Cancer Institute study suggests about 33 percent of stage IA and IB patients experience a reoccurrence. Up to 66 percent of stage IIA, IIB, or IIIA experience a reoccurrence. Interestingly, these percentages are virtually identical for both adenocarcinoma and squamous cell lung cancers. What about stage IIIB or IV disease? The study reports recurrence about half that of lower stages but suggests this is due to competing risk of mortality.
    Including surgery, my treatment success average was a dismal 1 for 5. That translates to a baseball batting average of .200, yielding a quick trip to the minor leagues. I had four recurrences after no evidence of disease (NED) treatments. We didn’t know perseverance was a requirement and we were not prepared.
    How should we prepare? Here is what I didn’t do. Have a frank conversation with my oncologist seeking information on recurrence likelihood. Share this information with my family to ensure they were prepared for bad news. Finally, celebrate my NED state by fully engaging in life. NED is that extra life treatment buys and we did not take maximum advantage of it. 
    A sidebar benefit of surviving is accumulating lessons learned. I now completely understand that lung cancer is a persistent malady that is difficult to eradicate with unpredictable treatment outcomes. Like the best baseball players, we need to take our turn at each new treatment with a fresh perspective, forgetting our last experience and striving only to put the ball in play and arrest our disease. 
    Stay the course.
  72. Like
    Tom Galli got a reaction from Sillycat1957 for a blog entry, Hope Is A Good Thing   
    Red, in white shirt and loose thin-black tie and sweating in Maine’s summer heat, is leaning on a rock-wall fence.  He’s just opened Andy’s letter found under the black obsidian rock.  In the background we hear Andy reading his evocative description of hope: “Remember Red, hope is a good thing, maybe the best of things and no good thing ever dies.” The movie Shawshank Redemption is a powerful story about hope and life with a message that should resonate with every lung cancer survivor.
    I watched the movie the other day and made the connection.  Andy was imprisoned for two life sentences with no possibility of parole.  He was wrongly convicted of murder and throughout the story of his day-to-day life in prison, everyone tells him “hope is a dangerous thing.”  On escaping, Andy proclaims that hope is “maybe the best of things.”  The movie story line is exactly parallel to the plight of the late-stage diagnosed lung cancer patient ⎯- an unforgiving disease with hope as the most effective means of avoiding consequences.
    For lung cancer, hope is not a medical remedy.  While new lung cancer treatments are emerging more frequently now, basic research funding to diagnose and treat lung cancer lags other cancers.  Perhaps the pace may pick up, one hopes.  Perhaps a treatment may emerge just in time to save a life, one hopes.  Perhaps a miracle remission occurs, one hopes.  Hope may not be a medical remedy but, for many of us, it is our only effective medicament.  And, in my case, hope is “maybe the best of things.” 
    Recall the story line of Shawshank.  Andy’s future is confinement in a mind numbing institution, but he makes a choice to live in a different reality and works diligently, every day, on a novel escape plan. He makes a conscious decision to live.  He embraces the hope of escape against all odds.  Andy’s poignant characterization about life reveals his reasoning: “I guess it comes down to a simple choice, really.  Get busy living or get busy dying.”  Exactly!
    Sometimes in the heat of lung cancer treatment, we forget its purpose ⎯- extended life.  No one knows how long but life for most is extended. So what do we do with the extension?  Re-read Andy’s characterization.
    We long for a period of life extending into satisfying old age.  But most without lung cancer do not dwell on the amount remaining on account.  Lung cancer patients take careful measure of the balance.  But, measure for what end?  I believe, if one chooses treatment, then one chooses life.  Rather than dwell on the remaining balance, focus on doing something you enjoy everyday.  I suggest a survivor forget the past, declare the future irrelevant, and live in the day.
    “Get busy living or get busy dying.”
    Stay the course.
  73. Like
    Tom Galli got a reaction from RonH for a blog entry, 10 Steps to Surviving Lung Cancer from a Survivor   
    MY STEPS TO SURVIVING A LUNG CANCER DIAGNOSIS
    Step 1 – Invest in sophisticated diagnosics before diagnosis
    If you smoke, were a long-term smoker, or are in an occupation that exposes you to carcinogenic toxins (asbestos removal, auto mechanic, painter, etc.), I suggest getting a computed tomography (CT) scan, often called a CAT scan, of the chest once a year. Insurance now covers it and CT will detect tumors far earlier than a chest x-ray. Early detection of small tumors dramatically enhances your survival chances. I had a chest x-ray in January 2004 and was diagnosed with stage 3b, non-small cell lung cancer the following month. The tumor hadn’t shown on the x-ray; but at diagnosis, it was almost 3 inches long and ½ inch in diameter. The only symptom I had was coughing up blood the day before diagnosis. Learn more about early CT screening.
    Step 2 – Choose a good general practitioner 
    Your general practitioner may be the manager of your lung cancer treatment. The GP likely will pick your cancer team and may need to do a little arm-twisting to get things moving. Therefore, there can be great benefits to having a GP who is seasoned and well known in the medical community. I prefer doctors of osteopathic medicine to medical doctors. I’ve found that in my experience the former treat people, not patients. I believe a good physician shows kindness, consideration, and compassion toward those in his or her care. These characteristics are essential. Be sure you know your GP and your GP knows you. Such knowledge and trust will give you a survival edge. There are great health care professionals out there.
    Step 3 – Ensure your oncologist is a physician
    A doctor has a degree in medicine and a license to practice. A physician is devoted to restoring, maintaining, and promoting your good health. My physician oncologist does a complete examination (looks in eyes, nose, and throat, checks pulse in the extremities, checks reflexes, listens to breathing and heart rate) every visit. He reviews and explains all test results and asks how I feel. He looks at me as I speak, and he listens and makes notes on what I say. He carefully explains medical treatment alternatives that may arrest the disease, and together we choose each next step. He never rushes consultations and, consequently, often is late to scheduled appointments. Because his tardiness results from spending time with those he treats, I know he cares about me and every other patient. These are some characteristics your physician oncologist should possess.
    Step 4 – Learn about your disease
    At diagnosis, I had no idea what lung cancer was. Moreover, I didn’t know what an oncologist did, nor could I spell the word! After diagnosis, I read everything I could find about the disease; a good resource is the www.LUNGevity.org website. Then I read medical journals, government reports, research papers, and studies. I made notes about things I didn’t understand and asked questions at my oncology consultations. My wife attended every consultation, procedure, and test to ensure every question was asked and answered, and that we understood the answers. You need to know about type, stage, statistics, radiation, diagnostics, chemotherapy, side effects, surgical options, and so much more. Your chances of survival are improved if you are informed enough to ask highly perceptive questions.
    Step 5 – Acquire a sanguine attitude quickly
    Cancer is a disease of death; lung cancer kills more than all other cancers. Your attitude toward treatment is, I believe, essential to survival. When you acquire a sanguine attitude, your treatment team will notice your optimism. They will enjoy interacting with you; they will care about you. I strongly suggest you read Stephen Jay Gould’s essay “The Median Isn’t the Message” to help you understand survival statistics and find optimism about what appear to be bleak probability of survival projections. Join a cancer blog or messageboard. I am a member of several where I can broadcast my complaints and protestations to people who understand and have useful advice for coping. Find cancer support groups and join one. Most people who treat you have no idea how you are feeling. But survivors in cancer support groups understand; they know how you feel—you’ll fit right in!
    Step 6 – Any port in a storm
    There is no such thing as “a little stick!” During procedures and treatment, almost everyone will attempt to gain access to your veins with an intravenous device of some type. All such intrusions are uncomfortable, and unless the practitioner is good and lucky he or she will miss more often than not. If your treatment involves intravenously administered chemotherapy, you likely will get stuck at least once a week. A good way to avoid discomfort and frustration is to ask for a port. Installation involves simple, low-risk surgery. Once in place, you need to keep the area clean and exercise precautions when bathing—but access to your veins is no longer a storm but a port in a storm!
    Step 7 – Don’t believe the miracle cure
    The consequences of a lung cancer diagnosis are frightening. For most, it will be your first serious encounter with the prospect of death. When you type “lung cancer” into Google, you will be bombarded by advertisement that promises miracle cure at considerable expense. There is no such thing as a miracle cure! Before you invest time (now precious) investigating one of these “too good to be true” remedies, check it out on www.quackwatch.org and discuss it with your physician. Oncology is a medical science. Procedures, drugs, and protocols are tested using scientific methods that are published and reviewed by peers and regulating organizations. When science-based breakthroughs are discovered, they are broadcast very quickly throughout the practitioner community.Read about Steve Jobs—one of the smartest technologists and businessmen the world has ever known—who delayed his cancer treatment.
    Step 8 – Don’t try to tough it out
    I am a retired soldier and believed I was man enough to handle almost anything. Cancer proved to be the “anything” I could not handle! I suffered a long time trying to tough it out before I admitted I was depressed. My physician’s response: “Of course you are depressed—how could you not be?” He prescribed appropriate medication, arranged consultations with a psychologist, and suggested I attend support groups. Unless you are tougher than I, you will experience depression. Admit it and accept help. Here are some other things you might try. Ask for the “freeze spray” before an IV is used. If claustrophobic, get a script for Xanax and take it shortly before scans. Even in summer, wear warm clothing to diagnostic and infusion sessions. Some areas where these take place are kept very cold. Many treatment centers have volunteers—engage one in conversation. Many are survivors or caregivers and have a wealth of helpful information. During consultations, I was so frightened I couldn’t rationally ask questions about results or next steps, and I certainly couldn’t remember what was said. Consequently, I never go alone to a consultation. I suggest if you can, always have someone with you too.
    Step 9 – Become a calendar maniac
    If you have a smartphone with a calendar application, become an expert in its use. If not, keep a paper “cancer calendar” to record information. Your life after diagnosis will likely become filled with scheduled appointments, and given the nature of the disease and intensity of the battle, these are appointments you don’t want to miss. For example, my chemotherapy cycle required an infusion every third Friday. I had to record three rounds of steroid medication taken every six hours before each infusion. I had a scheduled blood test every Monday following infusion. Nausea started Sunday morning and lasted until Tuesday. Joint pain started Wednesday and lasted until Saturday. If I took the nausea medication about an hour before onset, symptoms often were minimal. Furthermore, if I started pain medication a couple of hours before onset, my pain was manageable. I used the alarm feature on my phone to warn me in advance. Plus, there was life to live, and the calendar helped me avoid conflicts between my cancer treatment schedule and my life events schedule.
    Step 10 – Choose to live
    When asked about my cancer experience, I often tell those in treatment that cancer is a disease of life or death. I believe if you choose treatment, you are choosing life. And if you choose to live, do something with the life you are given. The “something” will be different for each of us, but doing whatever you enjoy or find fulfilling is so important. If you enjoyed an activity before diagnosis, do it afterward. Look at yourself in the mirror every morning. If you don’t see an expiration date stamped on your forehead, then enjoy the day and look forward to the next! Oh, by the way, your hair will grow back! Baldness is a beautiful badge of courage.
    Stay the course.
  74. Like
    Tom Galli got a reaction from Deb W for a blog entry, 10 Steps to Surviving Lung Cancer from a Survivor   
    MY STEPS TO SURVIVING A LUNG CANCER DIAGNOSIS
    Step 1 – Invest in sophisticated diagnosics before diagnosis
    If you smoke, were a long-term smoker, or are in an occupation that exposes you to carcinogenic toxins (asbestos removal, auto mechanic, painter, etc.), I suggest getting a computed tomography (CT) scan, often called a CAT scan, of the chest once a year. Insurance now covers it and CT will detect tumors far earlier than a chest x-ray. Early detection of small tumors dramatically enhances your survival chances. I had a chest x-ray in January 2004 and was diagnosed with stage 3b, non-small cell lung cancer the following month. The tumor hadn’t shown on the x-ray; but at diagnosis, it was almost 3 inches long and ½ inch in diameter. The only symptom I had was coughing up blood the day before diagnosis. Learn more about early CT screening.
    Step 2 – Choose a good general practitioner 
    Your general practitioner may be the manager of your lung cancer treatment. The GP likely will pick your cancer team and may need to do a little arm-twisting to get things moving. Therefore, there can be great benefits to having a GP who is seasoned and well known in the medical community. I prefer doctors of osteopathic medicine to medical doctors. I’ve found that in my experience the former treat people, not patients. I believe a good physician shows kindness, consideration, and compassion toward those in his or her care. These characteristics are essential. Be sure you know your GP and your GP knows you. Such knowledge and trust will give you a survival edge. There are great health care professionals out there.
    Step 3 – Ensure your oncologist is a physician
    A doctor has a degree in medicine and a license to practice. A physician is devoted to restoring, maintaining, and promoting your good health. My physician oncologist does a complete examination (looks in eyes, nose, and throat, checks pulse in the extremities, checks reflexes, listens to breathing and heart rate) every visit. He reviews and explains all test results and asks how I feel. He looks at me as I speak, and he listens and makes notes on what I say. He carefully explains medical treatment alternatives that may arrest the disease, and together we choose each next step. He never rushes consultations and, consequently, often is late to scheduled appointments. Because his tardiness results from spending time with those he treats, I know he cares about me and every other patient. These are some characteristics your physician oncologist should possess.
    Step 4 – Learn about your disease
    At diagnosis, I had no idea what lung cancer was. Moreover, I didn’t know what an oncologist did, nor could I spell the word! After diagnosis, I read everything I could find about the disease; a good resource is the www.LUNGevity.org website. Then I read medical journals, government reports, research papers, and studies. I made notes about things I didn’t understand and asked questions at my oncology consultations. My wife attended every consultation, procedure, and test to ensure every question was asked and answered, and that we understood the answers. You need to know about type, stage, statistics, radiation, diagnostics, chemotherapy, side effects, surgical options, and so much more. Your chances of survival are improved if you are informed enough to ask highly perceptive questions.
    Step 5 – Acquire a sanguine attitude quickly
    Cancer is a disease of death; lung cancer kills more than all other cancers. Your attitude toward treatment is, I believe, essential to survival. When you acquire a sanguine attitude, your treatment team will notice your optimism. They will enjoy interacting with you; they will care about you. I strongly suggest you read Stephen Jay Gould’s essay “The Median Isn’t the Message” to help you understand survival statistics and find optimism about what appear to be bleak probability of survival projections. Join a cancer blog or messageboard. I am a member of several where I can broadcast my complaints and protestations to people who understand and have useful advice for coping. Find cancer support groups and join one. Most people who treat you have no idea how you are feeling. But survivors in cancer support groups understand; they know how you feel—you’ll fit right in!
    Step 6 – Any port in a storm
    There is no such thing as “a little stick!” During procedures and treatment, almost everyone will attempt to gain access to your veins with an intravenous device of some type. All such intrusions are uncomfortable, and unless the practitioner is good and lucky he or she will miss more often than not. If your treatment involves intravenously administered chemotherapy, you likely will get stuck at least once a week. A good way to avoid discomfort and frustration is to ask for a port. Installation involves simple, low-risk surgery. Once in place, you need to keep the area clean and exercise precautions when bathing—but access to your veins is no longer a storm but a port in a storm!
    Step 7 – Don’t believe the miracle cure
    The consequences of a lung cancer diagnosis are frightening. For most, it will be your first serious encounter with the prospect of death. When you type “lung cancer” into Google, you will be bombarded by advertisement that promises miracle cure at considerable expense. There is no such thing as a miracle cure! Before you invest time (now precious) investigating one of these “too good to be true” remedies, check it out on www.quackwatch.org and discuss it with your physician. Oncology is a medical science. Procedures, drugs, and protocols are tested using scientific methods that are published and reviewed by peers and regulating organizations. When science-based breakthroughs are discovered, they are broadcast very quickly throughout the practitioner community.Read about Steve Jobs—one of the smartest technologists and businessmen the world has ever known—who delayed his cancer treatment.
    Step 8 – Don’t try to tough it out
    I am a retired soldier and believed I was man enough to handle almost anything. Cancer proved to be the “anything” I could not handle! I suffered a long time trying to tough it out before I admitted I was depressed. My physician’s response: “Of course you are depressed—how could you not be?” He prescribed appropriate medication, arranged consultations with a psychologist, and suggested I attend support groups. Unless you are tougher than I, you will experience depression. Admit it and accept help. Here are some other things you might try. Ask for the “freeze spray” before an IV is used. If claustrophobic, get a script for Xanax and take it shortly before scans. Even in summer, wear warm clothing to diagnostic and infusion sessions. Some areas where these take place are kept very cold. Many treatment centers have volunteers—engage one in conversation. Many are survivors or caregivers and have a wealth of helpful information. During consultations, I was so frightened I couldn’t rationally ask questions about results or next steps, and I certainly couldn’t remember what was said. Consequently, I never go alone to a consultation. I suggest if you can, always have someone with you too.
    Step 9 – Become a calendar maniac
    If you have a smartphone with a calendar application, become an expert in its use. If not, keep a paper “cancer calendar” to record information. Your life after diagnosis will likely become filled with scheduled appointments, and given the nature of the disease and intensity of the battle, these are appointments you don’t want to miss. For example, my chemotherapy cycle required an infusion every third Friday. I had to record three rounds of steroid medication taken every six hours before each infusion. I had a scheduled blood test every Monday following infusion. Nausea started Sunday morning and lasted until Tuesday. Joint pain started Wednesday and lasted until Saturday. If I took the nausea medication about an hour before onset, symptoms often were minimal. Furthermore, if I started pain medication a couple of hours before onset, my pain was manageable. I used the alarm feature on my phone to warn me in advance. Plus, there was life to live, and the calendar helped me avoid conflicts between my cancer treatment schedule and my life events schedule.
    Step 10 – Choose to live
    When asked about my cancer experience, I often tell those in treatment that cancer is a disease of life or death. I believe if you choose treatment, you are choosing life. And if you choose to live, do something with the life you are given. The “something” will be different for each of us, but doing whatever you enjoy or find fulfilling is so important. If you enjoyed an activity before diagnosis, do it afterward. Look at yourself in the mirror every morning. If you don’t see an expiration date stamped on your forehead, then enjoy the day and look forward to the next! Oh, by the way, your hair will grow back! Baldness is a beautiful badge of courage.
    Stay the course.
  75. Like
    Tom Galli got a reaction from eric byrne for a blog entry, 10 Steps to Surviving Lung Cancer from a Survivor   
    MY STEPS TO SURVIVING A LUNG CANCER DIAGNOSIS
    Step 1 – Invest in sophisticated diagnosics before diagnosis
    If you smoke, were a long-term smoker, or are in an occupation that exposes you to carcinogenic toxins (asbestos removal, auto mechanic, painter, etc.), I suggest getting a computed tomography (CT) scan, often called a CAT scan, of the chest once a year. Insurance now covers it and CT will detect tumors far earlier than a chest x-ray. Early detection of small tumors dramatically enhances your survival chances. I had a chest x-ray in January 2004 and was diagnosed with stage 3b, non-small cell lung cancer the following month. The tumor hadn’t shown on the x-ray; but at diagnosis, it was almost 3 inches long and ½ inch in diameter. The only symptom I had was coughing up blood the day before diagnosis. Learn more about early CT screening.
    Step 2 – Choose a good general practitioner 
    Your general practitioner may be the manager of your lung cancer treatment. The GP likely will pick your cancer team and may need to do a little arm-twisting to get things moving. Therefore, there can be great benefits to having a GP who is seasoned and well known in the medical community. I prefer doctors of osteopathic medicine to medical doctors. I’ve found that in my experience the former treat people, not patients. I believe a good physician shows kindness, consideration, and compassion toward those in his or her care. These characteristics are essential. Be sure you know your GP and your GP knows you. Such knowledge and trust will give you a survival edge. There are great health care professionals out there.
    Step 3 – Ensure your oncologist is a physician
    A doctor has a degree in medicine and a license to practice. A physician is devoted to restoring, maintaining, and promoting your good health. My physician oncologist does a complete examination (looks in eyes, nose, and throat, checks pulse in the extremities, checks reflexes, listens to breathing and heart rate) every visit. He reviews and explains all test results and asks how I feel. He looks at me as I speak, and he listens and makes notes on what I say. He carefully explains medical treatment alternatives that may arrest the disease, and together we choose each next step. He never rushes consultations and, consequently, often is late to scheduled appointments. Because his tardiness results from spending time with those he treats, I know he cares about me and every other patient. These are some characteristics your physician oncologist should possess.
    Step 4 – Learn about your disease
    At diagnosis, I had no idea what lung cancer was. Moreover, I didn’t know what an oncologist did, nor could I spell the word! After diagnosis, I read everything I could find about the disease; a good resource is the www.LUNGevity.org website. Then I read medical journals, government reports, research papers, and studies. I made notes about things I didn’t understand and asked questions at my oncology consultations. My wife attended every consultation, procedure, and test to ensure every question was asked and answered, and that we understood the answers. You need to know about type, stage, statistics, radiation, diagnostics, chemotherapy, side effects, surgical options, and so much more. Your chances of survival are improved if you are informed enough to ask highly perceptive questions.
    Step 5 – Acquire a sanguine attitude quickly
    Cancer is a disease of death; lung cancer kills more than all other cancers. Your attitude toward treatment is, I believe, essential to survival. When you acquire a sanguine attitude, your treatment team will notice your optimism. They will enjoy interacting with you; they will care about you. I strongly suggest you read Stephen Jay Gould’s essay “The Median Isn’t the Message” to help you understand survival statistics and find optimism about what appear to be bleak probability of survival projections. Join a cancer blog or messageboard. I am a member of several where I can broadcast my complaints and protestations to people who understand and have useful advice for coping. Find cancer support groups and join one. Most people who treat you have no idea how you are feeling. But survivors in cancer support groups understand; they know how you feel—you’ll fit right in!
    Step 6 – Any port in a storm
    There is no such thing as “a little stick!” During procedures and treatment, almost everyone will attempt to gain access to your veins with an intravenous device of some type. All such intrusions are uncomfortable, and unless the practitioner is good and lucky he or she will miss more often than not. If your treatment involves intravenously administered chemotherapy, you likely will get stuck at least once a week. A good way to avoid discomfort and frustration is to ask for a port. Installation involves simple, low-risk surgery. Once in place, you need to keep the area clean and exercise precautions when bathing—but access to your veins is no longer a storm but a port in a storm!
    Step 7 – Don’t believe the miracle cure
    The consequences of a lung cancer diagnosis are frightening. For most, it will be your first serious encounter with the prospect of death. When you type “lung cancer” into Google, you will be bombarded by advertisement that promises miracle cure at considerable expense. There is no such thing as a miracle cure! Before you invest time (now precious) investigating one of these “too good to be true” remedies, check it out on www.quackwatch.org and discuss it with your physician. Oncology is a medical science. Procedures, drugs, and protocols are tested using scientific methods that are published and reviewed by peers and regulating organizations. When science-based breakthroughs are discovered, they are broadcast very quickly throughout the practitioner community.Read about Steve Jobs—one of the smartest technologists and businessmen the world has ever known—who delayed his cancer treatment.
    Step 8 – Don’t try to tough it out
    I am a retired soldier and believed I was man enough to handle almost anything. Cancer proved to be the “anything” I could not handle! I suffered a long time trying to tough it out before I admitted I was depressed. My physician’s response: “Of course you are depressed—how could you not be?” He prescribed appropriate medication, arranged consultations with a psychologist, and suggested I attend support groups. Unless you are tougher than I, you will experience depression. Admit it and accept help. Here are some other things you might try. Ask for the “freeze spray” before an IV is used. If claustrophobic, get a script for Xanax and take it shortly before scans. Even in summer, wear warm clothing to diagnostic and infusion sessions. Some areas where these take place are kept very cold. Many treatment centers have volunteers—engage one in conversation. Many are survivors or caregivers and have a wealth of helpful information. During consultations, I was so frightened I couldn’t rationally ask questions about results or next steps, and I certainly couldn’t remember what was said. Consequently, I never go alone to a consultation. I suggest if you can, always have someone with you too.
    Step 9 – Become a calendar maniac
    If you have a smartphone with a calendar application, become an expert in its use. If not, keep a paper “cancer calendar” to record information. Your life after diagnosis will likely become filled with scheduled appointments, and given the nature of the disease and intensity of the battle, these are appointments you don’t want to miss. For example, my chemotherapy cycle required an infusion every third Friday. I had to record three rounds of steroid medication taken every six hours before each infusion. I had a scheduled blood test every Monday following infusion. Nausea started Sunday morning and lasted until Tuesday. Joint pain started Wednesday and lasted until Saturday. If I took the nausea medication about an hour before onset, symptoms often were minimal. Furthermore, if I started pain medication a couple of hours before onset, my pain was manageable. I used the alarm feature on my phone to warn me in advance. Plus, there was life to live, and the calendar helped me avoid conflicts between my cancer treatment schedule and my life events schedule.
    Step 10 – Choose to live
    When asked about my cancer experience, I often tell those in treatment that cancer is a disease of life or death. I believe if you choose treatment, you are choosing life. And if you choose to live, do something with the life you are given. The “something” will be different for each of us, but doing whatever you enjoy or find fulfilling is so important. If you enjoyed an activity before diagnosis, do it afterward. Look at yourself in the mirror every morning. If you don’t see an expiration date stamped on your forehead, then enjoy the day and look forward to the next! Oh, by the way, your hair will grow back! Baldness is a beautiful badge of courage.
    Stay the course.
  76. Thanks
    Tom Galli got a reaction from JenG for a blog entry, 10 Steps to Surviving Lung Cancer from a Survivor   
    MY STEPS TO SURVIVING A LUNG CANCER DIAGNOSIS
    Step 1 – Invest in sophisticated diagnosics before diagnosis
    If you smoke, were a long-term smoker, or are in an occupation that exposes you to carcinogenic toxins (asbestos removal, auto mechanic, painter, etc.), I suggest getting a computed tomography (CT) scan, often called a CAT scan, of the chest once a year. Insurance now covers it and CT will detect tumors far earlier than a chest x-ray. Early detection of small tumors dramatically enhances your survival chances. I had a chest x-ray in January 2004 and was diagnosed with stage 3b, non-small cell lung cancer the following month. The tumor hadn’t shown on the x-ray; but at diagnosis, it was almost 3 inches long and ½ inch in diameter. The only symptom I had was coughing up blood the day before diagnosis. Learn more about early CT screening.
    Step 2 – Choose a good general practitioner 
    Your general practitioner may be the manager of your lung cancer treatment. The GP likely will pick your cancer team and may need to do a little arm-twisting to get things moving. Therefore, there can be great benefits to having a GP who is seasoned and well known in the medical community. I prefer doctors of osteopathic medicine to medical doctors. I’ve found that in my experience the former treat people, not patients. I believe a good physician shows kindness, consideration, and compassion toward those in his or her care. These characteristics are essential. Be sure you know your GP and your GP knows you. Such knowledge and trust will give you a survival edge. There are great health care professionals out there.
    Step 3 – Ensure your oncologist is a physician
    A doctor has a degree in medicine and a license to practice. A physician is devoted to restoring, maintaining, and promoting your good health. My physician oncologist does a complete examination (looks in eyes, nose, and throat, checks pulse in the extremities, checks reflexes, listens to breathing and heart rate) every visit. He reviews and explains all test results and asks how I feel. He looks at me as I speak, and he listens and makes notes on what I say. He carefully explains medical treatment alternatives that may arrest the disease, and together we choose each next step. He never rushes consultations and, consequently, often is late to scheduled appointments. Because his tardiness results from spending time with those he treats, I know he cares about me and every other patient. These are some characteristics your physician oncologist should possess.
    Step 4 – Learn about your disease
    At diagnosis, I had no idea what lung cancer was. Moreover, I didn’t know what an oncologist did, nor could I spell the word! After diagnosis, I read everything I could find about the disease; a good resource is the www.LUNGevity.org website. Then I read medical journals, government reports, research papers, and studies. I made notes about things I didn’t understand and asked questions at my oncology consultations. My wife attended every consultation, procedure, and test to ensure every question was asked and answered, and that we understood the answers. You need to know about type, stage, statistics, radiation, diagnostics, chemotherapy, side effects, surgical options, and so much more. Your chances of survival are improved if you are informed enough to ask highly perceptive questions.
    Step 5 – Acquire a sanguine attitude quickly
    Cancer is a disease of death; lung cancer kills more than all other cancers. Your attitude toward treatment is, I believe, essential to survival. When you acquire a sanguine attitude, your treatment team will notice your optimism. They will enjoy interacting with you; they will care about you. I strongly suggest you read Stephen Jay Gould’s essay “The Median Isn’t the Message” to help you understand survival statistics and find optimism about what appear to be bleak probability of survival projections. Join a cancer blog or messageboard. I am a member of several where I can broadcast my complaints and protestations to people who understand and have useful advice for coping. Find cancer support groups and join one. Most people who treat you have no idea how you are feeling. But survivors in cancer support groups understand; they know how you feel—you’ll fit right in!
    Step 6 – Any port in a storm
    There is no such thing as “a little stick!” During procedures and treatment, almost everyone will attempt to gain access to your veins with an intravenous device of some type. All such intrusions are uncomfortable, and unless the practitioner is good and lucky he or she will miss more often than not. If your treatment involves intravenously administered chemotherapy, you likely will get stuck at least once a week. A good way to avoid discomfort and frustration is to ask for a port. Installation involves simple, low-risk surgery. Once in place, you need to keep the area clean and exercise precautions when bathing—but access to your veins is no longer a storm but a port in a storm!
    Step 7 – Don’t believe the miracle cure
    The consequences of a lung cancer diagnosis are frightening. For most, it will be your first serious encounter with the prospect of death. When you type “lung cancer” into Google, you will be bombarded by advertisement that promises miracle cure at considerable expense. There is no such thing as a miracle cure! Before you invest time (now precious) investigating one of these “too good to be true” remedies, check it out on www.quackwatch.org and discuss it with your physician. Oncology is a medical science. Procedures, drugs, and protocols are tested using scientific methods that are published and reviewed by peers and regulating organizations. When science-based breakthroughs are discovered, they are broadcast very quickly throughout the practitioner community.Read about Steve Jobs—one of the smartest technologists and businessmen the world has ever known—who delayed his cancer treatment.
    Step 8 – Don’t try to tough it out
    I am a retired soldier and believed I was man enough to handle almost anything. Cancer proved to be the “anything” I could not handle! I suffered a long time trying to tough it out before I admitted I was depressed. My physician’s response: “Of course you are depressed—how could you not be?” He prescribed appropriate medication, arranged consultations with a psychologist, and suggested I attend support groups. Unless you are tougher than I, you will experience depression. Admit it and accept help. Here are some other things you might try. Ask for the “freeze spray” before an IV is used. If claustrophobic, get a script for Xanax and take it shortly before scans. Even in summer, wear warm clothing to diagnostic and infusion sessions. Some areas where these take place are kept very cold. Many treatment centers have volunteers—engage one in conversation. Many are survivors or caregivers and have a wealth of helpful information. During consultations, I was so frightened I couldn’t rationally ask questions about results or next steps, and I certainly couldn’t remember what was said. Consequently, I never go alone to a consultation. I suggest if you can, always have someone with you too.
    Step 9 – Become a calendar maniac
    If you have a smartphone with a calendar application, become an expert in its use. If not, keep a paper “cancer calendar” to record information. Your life after diagnosis will likely become filled with scheduled appointments, and given the nature of the disease and intensity of the battle, these are appointments you don’t want to miss. For example, my chemotherapy cycle required an infusion every third Friday. I had to record three rounds of steroid medication taken every six hours before each infusion. I had a scheduled blood test every Monday following infusion. Nausea started Sunday morning and lasted until Tuesday. Joint pain started Wednesday and lasted until Saturday. If I took the nausea medication about an hour before onset, symptoms often were minimal. Furthermore, if I started pain medication a couple of hours before onset, my pain was manageable. I used the alarm feature on my phone to warn me in advance. Plus, there was life to live, and the calendar helped me avoid conflicts between my cancer treatment schedule and my life events schedule.
    Step 10 – Choose to live
    When asked about my cancer experience, I often tell those in treatment that cancer is a disease of life or death. I believe if you choose treatment, you are choosing life. And if you choose to live, do something with the life you are given. The “something” will be different for each of us, but doing whatever you enjoy or find fulfilling is so important. If you enjoyed an activity before diagnosis, do it afterward. Look at yourself in the mirror every morning. If you don’t see an expiration date stamped on your forehead, then enjoy the day and look forward to the next! Oh, by the way, your hair will grow back! Baldness is a beautiful badge of courage.
    Stay the course.
  77. Thanks
    Tom Galli got a reaction from Barbitu for a blog entry, 10 Steps to Surviving Lung Cancer from a Survivor   
    MY STEPS TO SURVIVING A LUNG CANCER DIAGNOSIS
    Step 1 – Invest in sophisticated diagnosics before diagnosis
    If you smoke, were a long-term smoker, or are in an occupation that exposes you to carcinogenic toxins (asbestos removal, auto mechanic, painter, etc.), I suggest getting a computed tomography (CT) scan, often called a CAT scan, of the chest once a year. Insurance now covers it and CT will detect tumors far earlier than a chest x-ray. Early detection of small tumors dramatically enhances your survival chances. I had a chest x-ray in January 2004 and was diagnosed with stage 3b, non-small cell lung cancer the following month. The tumor hadn’t shown on the x-ray; but at diagnosis, it was almost 3 inches long and ½ inch in diameter. The only symptom I had was coughing up blood the day before diagnosis. Learn more about early CT screening.
    Step 2 – Choose a good general practitioner 
    Your general practitioner may be the manager of your lung cancer treatment. The GP likely will pick your cancer team and may need to do a little arm-twisting to get things moving. Therefore, there can be great benefits to having a GP who is seasoned and well known in the medical community. I prefer doctors of osteopathic medicine to medical doctors. I’ve found that in my experience the former treat people, not patients. I believe a good physician shows kindness, consideration, and compassion toward those in his or her care. These characteristics are essential. Be sure you know your GP and your GP knows you. Such knowledge and trust will give you a survival edge. There are great health care professionals out there.
    Step 3 – Ensure your oncologist is a physician
    A doctor has a degree in medicine and a license to practice. A physician is devoted to restoring, maintaining, and promoting your good health. My physician oncologist does a complete examination (looks in eyes, nose, and throat, checks pulse in the extremities, checks reflexes, listens to breathing and heart rate) every visit. He reviews and explains all test results and asks how I feel. He looks at me as I speak, and he listens and makes notes on what I say. He carefully explains medical treatment alternatives that may arrest the disease, and together we choose each next step. He never rushes consultations and, consequently, often is late to scheduled appointments. Because his tardiness results from spending time with those he treats, I know he cares about me and every other patient. These are some characteristics your physician oncologist should possess.
    Step 4 – Learn about your disease
    At diagnosis, I had no idea what lung cancer was. Moreover, I didn’t know what an oncologist did, nor could I spell the word! After diagnosis, I read everything I could find about the disease; a good resource is the www.LUNGevity.org website. Then I read medical journals, government reports, research papers, and studies. I made notes about things I didn’t understand and asked questions at my oncology consultations. My wife attended every consultation, procedure, and test to ensure every question was asked and answered, and that we understood the answers. You need to know about type, stage, statistics, radiation, diagnostics, chemotherapy, side effects, surgical options, and so much more. Your chances of survival are improved if you are informed enough to ask highly perceptive questions.
    Step 5 – Acquire a sanguine attitude quickly
    Cancer is a disease of death; lung cancer kills more than all other cancers. Your attitude toward treatment is, I believe, essential to survival. When you acquire a sanguine attitude, your treatment team will notice your optimism. They will enjoy interacting with you; they will care about you. I strongly suggest you read Stephen Jay Gould’s essay “The Median Isn’t the Message” to help you understand survival statistics and find optimism about what appear to be bleak probability of survival projections. Join a cancer blog or messageboard. I am a member of several where I can broadcast my complaints and protestations to people who understand and have useful advice for coping. Find cancer support groups and join one. Most people who treat you have no idea how you are feeling. But survivors in cancer support groups understand; they know how you feel—you’ll fit right in!
    Step 6 – Any port in a storm
    There is no such thing as “a little stick!” During procedures and treatment, almost everyone will attempt to gain access to your veins with an intravenous device of some type. All such intrusions are uncomfortable, and unless the practitioner is good and lucky he or she will miss more often than not. If your treatment involves intravenously administered chemotherapy, you likely will get stuck at least once a week. A good way to avoid discomfort and frustration is to ask for a port. Installation involves simple, low-risk surgery. Once in place, you need to keep the area clean and exercise precautions when bathing—but access to your veins is no longer a storm but a port in a storm!
    Step 7 – Don’t believe the miracle cure
    The consequences of a lung cancer diagnosis are frightening. For most, it will be your first serious encounter with the prospect of death. When you type “lung cancer” into Google, you will be bombarded by advertisement that promises miracle cure at considerable expense. There is no such thing as a miracle cure! Before you invest time (now precious) investigating one of these “too good to be true” remedies, check it out on www.quackwatch.org and discuss it with your physician. Oncology is a medical science. Procedures, drugs, and protocols are tested using scientific methods that are published and reviewed by peers and regulating organizations. When science-based breakthroughs are discovered, they are broadcast very quickly throughout the practitioner community.Read about Steve Jobs—one of the smartest technologists and businessmen the world has ever known—who delayed his cancer treatment.
    Step 8 – Don’t try to tough it out
    I am a retired soldier and believed I was man enough to handle almost anything. Cancer proved to be the “anything” I could not handle! I suffered a long time trying to tough it out before I admitted I was depressed. My physician’s response: “Of course you are depressed—how could you not be?” He prescribed appropriate medication, arranged consultations with a psychologist, and suggested I attend support groups. Unless you are tougher than I, you will experience depression. Admit it and accept help. Here are some other things you might try. Ask for the “freeze spray” before an IV is used. If claustrophobic, get a script for Xanax and take it shortly before scans. Even in summer, wear warm clothing to diagnostic and infusion sessions. Some areas where these take place are kept very cold. Many treatment centers have volunteers—engage one in conversation. Many are survivors or caregivers and have a wealth of helpful information. During consultations, I was so frightened I couldn’t rationally ask questions about results or next steps, and I certainly couldn’t remember what was said. Consequently, I never go alone to a consultation. I suggest if you can, always have someone with you too.
    Step 9 – Become a calendar maniac
    If you have a smartphone with a calendar application, become an expert in its use. If not, keep a paper “cancer calendar” to record information. Your life after diagnosis will likely become filled with scheduled appointments, and given the nature of the disease and intensity of the battle, these are appointments you don’t want to miss. For example, my chemotherapy cycle required an infusion every third Friday. I had to record three rounds of steroid medication taken every six hours before each infusion. I had a scheduled blood test every Monday following infusion. Nausea started Sunday morning and lasted until Tuesday. Joint pain started Wednesday and lasted until Saturday. If I took the nausea medication about an hour before onset, symptoms often were minimal. Furthermore, if I started pain medication a couple of hours before onset, my pain was manageable. I used the alarm feature on my phone to warn me in advance. Plus, there was life to live, and the calendar helped me avoid conflicts between my cancer treatment schedule and my life events schedule.
    Step 10 – Choose to live
    When asked about my cancer experience, I often tell those in treatment that cancer is a disease of life or death. I believe if you choose treatment, you are choosing life. And if you choose to live, do something with the life you are given. The “something” will be different for each of us, but doing whatever you enjoy or find fulfilling is so important. If you enjoyed an activity before diagnosis, do it afterward. Look at yourself in the mirror every morning. If you don’t see an expiration date stamped on your forehead, then enjoy the day and look forward to the next! Oh, by the way, your hair will grow back! Baldness is a beautiful badge of courage.
    Stay the course.
  78. Like
    Tom Galli got a reaction from Faith&Hope for a blog entry, 10 Steps to Surviving Lung Cancer from a Survivor   
    MY STEPS TO SURVIVING A LUNG CANCER DIAGNOSIS
    Step 1 – Invest in sophisticated diagnosics before diagnosis
    If you smoke, were a long-term smoker, or are in an occupation that exposes you to carcinogenic toxins (asbestos removal, auto mechanic, painter, etc.), I suggest getting a computed tomography (CT) scan, often called a CAT scan, of the chest once a year. Insurance now covers it and CT will detect tumors far earlier than a chest x-ray. Early detection of small tumors dramatically enhances your survival chances. I had a chest x-ray in January 2004 and was diagnosed with stage 3b, non-small cell lung cancer the following month. The tumor hadn’t shown on the x-ray; but at diagnosis, it was almost 3 inches long and ½ inch in diameter. The only symptom I had was coughing up blood the day before diagnosis. Learn more about early CT screening.
    Step 2 – Choose a good general practitioner 
    Your general practitioner may be the manager of your lung cancer treatment. The GP likely will pick your cancer team and may need to do a little arm-twisting to get things moving. Therefore, there can be great benefits to having a GP who is seasoned and well known in the medical community. I prefer doctors of osteopathic medicine to medical doctors. I’ve found that in my experience the former treat people, not patients. I believe a good physician shows kindness, consideration, and compassion toward those in his or her care. These characteristics are essential. Be sure you know your GP and your GP knows you. Such knowledge and trust will give you a survival edge. There are great health care professionals out there.
    Step 3 – Ensure your oncologist is a physician
    A doctor has a degree in medicine and a license to practice. A physician is devoted to restoring, maintaining, and promoting your good health. My physician oncologist does a complete examination (looks in eyes, nose, and throat, checks pulse in the extremities, checks reflexes, listens to breathing and heart rate) every visit. He reviews and explains all test results and asks how I feel. He looks at me as I speak, and he listens and makes notes on what I say. He carefully explains medical treatment alternatives that may arrest the disease, and together we choose each next step. He never rushes consultations and, consequently, often is late to scheduled appointments. Because his tardiness results from spending time with those he treats, I know he cares about me and every other patient. These are some characteristics your physician oncologist should possess.
    Step 4 – Learn about your disease
    At diagnosis, I had no idea what lung cancer was. Moreover, I didn’t know what an oncologist did, nor could I spell the word! After diagnosis, I read everything I could find about the disease; a good resource is the www.LUNGevity.org website. Then I read medical journals, government reports, research papers, and studies. I made notes about things I didn’t understand and asked questions at my oncology consultations. My wife attended every consultation, procedure, and test to ensure every question was asked and answered, and that we understood the answers. You need to know about type, stage, statistics, radiation, diagnostics, chemotherapy, side effects, surgical options, and so much more. Your chances of survival are improved if you are informed enough to ask highly perceptive questions.
    Step 5 – Acquire a sanguine attitude quickly
    Cancer is a disease of death; lung cancer kills more than all other cancers. Your attitude toward treatment is, I believe, essential to survival. When you acquire a sanguine attitude, your treatment team will notice your optimism. They will enjoy interacting with you; they will care about you. I strongly suggest you read Stephen Jay Gould’s essay “The Median Isn’t the Message” to help you understand survival statistics and find optimism about what appear to be bleak probability of survival projections. Join a cancer blog or messageboard. I am a member of several where I can broadcast my complaints and protestations to people who understand and have useful advice for coping. Find cancer support groups and join one. Most people who treat you have no idea how you are feeling. But survivors in cancer support groups understand; they know how you feel—you’ll fit right in!
    Step 6 – Any port in a storm
    There is no such thing as “a little stick!” During procedures and treatment, almost everyone will attempt to gain access to your veins with an intravenous device of some type. All such intrusions are uncomfortable, and unless the practitioner is good and lucky he or she will miss more often than not. If your treatment involves intravenously administered chemotherapy, you likely will get stuck at least once a week. A good way to avoid discomfort and frustration is to ask for a port. Installation involves simple, low-risk surgery. Once in place, you need to keep the area clean and exercise precautions when bathing—but access to your veins is no longer a storm but a port in a storm!
    Step 7 – Don’t believe the miracle cure
    The consequences of a lung cancer diagnosis are frightening. For most, it will be your first serious encounter with the prospect of death. When you type “lung cancer” into Google, you will be bombarded by advertisement that promises miracle cure at considerable expense. There is no such thing as a miracle cure! Before you invest time (now precious) investigating one of these “too good to be true” remedies, check it out on www.quackwatch.org and discuss it with your physician. Oncology is a medical science. Procedures, drugs, and protocols are tested using scientific methods that are published and reviewed by peers and regulating organizations. When science-based breakthroughs are discovered, they are broadcast very quickly throughout the practitioner community.Read about Steve Jobs—one of the smartest technologists and businessmen the world has ever known—who delayed his cancer treatment.
    Step 8 – Don’t try to tough it out
    I am a retired soldier and believed I was man enough to handle almost anything. Cancer proved to be the “anything” I could not handle! I suffered a long time trying to tough it out before I admitted I was depressed. My physician’s response: “Of course you are depressed—how could you not be?” He prescribed appropriate medication, arranged consultations with a psychologist, and suggested I attend support groups. Unless you are tougher than I, you will experience depression. Admit it and accept help. Here are some other things you might try. Ask for the “freeze spray” before an IV is used. If claustrophobic, get a script for Xanax and take it shortly before scans. Even in summer, wear warm clothing to diagnostic and infusion sessions. Some areas where these take place are kept very cold. Many treatment centers have volunteers—engage one in conversation. Many are survivors or caregivers and have a wealth of helpful information. During consultations, I was so frightened I couldn’t rationally ask questions about results or next steps, and I certainly couldn’t remember what was said. Consequently, I never go alone to a consultation. I suggest if you can, always have someone with you too.
    Step 9 – Become a calendar maniac
    If you have a smartphone with a calendar application, become an expert in its use. If not, keep a paper “cancer calendar” to record information. Your life after diagnosis will likely become filled with scheduled appointments, and given the nature of the disease and intensity of the battle, these are appointments you don’t want to miss. For example, my chemotherapy cycle required an infusion every third Friday. I had to record three rounds of steroid medication taken every six hours before each infusion. I had a scheduled blood test every Monday following infusion. Nausea started Sunday morning and lasted until Tuesday. Joint pain started Wednesday and lasted until Saturday. If I took the nausea medication about an hour before onset, symptoms often were minimal. Furthermore, if I started pain medication a couple of hours before onset, my pain was manageable. I used the alarm feature on my phone to warn me in advance. Plus, there was life to live, and the calendar helped me avoid conflicts between my cancer treatment schedule and my life events schedule.
    Step 10 – Choose to live
    When asked about my cancer experience, I often tell those in treatment that cancer is a disease of life or death. I believe if you choose treatment, you are choosing life. And if you choose to live, do something with the life you are given. The “something” will be different for each of us, but doing whatever you enjoy or find fulfilling is so important. If you enjoyed an activity before diagnosis, do it afterward. Look at yourself in the mirror every morning. If you don’t see an expiration date stamped on your forehead, then enjoy the day and look forward to the next! Oh, by the way, your hair will grow back! Baldness is a beautiful badge of courage.
    Stay the course.
  79. Like
    Tom Galli got a reaction from LaurenH for a blog entry, Hope Is A Good Thing   
    Red, in white shirt and loose thin-black tie and sweating in Maine’s summer heat, is leaning on a rock-wall fence.  He’s just opened Andy’s letter found under the black obsidian rock.  In the background we hear Andy reading his evocative description of hope: “Remember Red, hope is a good thing, maybe the best of things and no good thing ever dies.” The movie Shawshank Redemption is a powerful story about hope and life with a message that should resonate with every lung cancer survivor.
    I watched the movie the other day and made the connection.  Andy was imprisoned for two life sentences with no possibility of parole.  He was wrongly convicted of murder and throughout the story of his day-to-day life in prison, everyone tells him “hope is a dangerous thing.”  On escaping, Andy proclaims that hope is “maybe the best of things.”  The movie story line is exactly parallel to the plight of the late-stage diagnosed lung cancer patient ⎯- an unforgiving disease with hope as the most effective means of avoiding consequences.
    For lung cancer, hope is not a medical remedy.  While new lung cancer treatments are emerging more frequently now, basic research funding to diagnose and treat lung cancer lags other cancers.  Perhaps the pace may pick up, one hopes.  Perhaps a treatment may emerge just in time to save a life, one hopes.  Perhaps a miracle remission occurs, one hopes.  Hope may not be a medical remedy but, for many of us, it is our only effective medicament.  And, in my case, hope is “maybe the best of things.” 
    Recall the story line of Shawshank.  Andy’s future is confinement in a mind numbing institution, but he makes a choice to live in a different reality and works diligently, every day, on a novel escape plan. He makes a conscious decision to live.  He embraces the hope of escape against all odds.  Andy’s poignant characterization about life reveals his reasoning: “I guess it comes down to a simple choice, really.  Get busy living or get busy dying.”  Exactly!
    Sometimes in the heat of lung cancer treatment, we forget its purpose ⎯- extended life.  No one knows how long but life for most is extended. So what do we do with the extension?  Re-read Andy’s characterization.
    We long for a period of life extending into satisfying old age.  But most without lung cancer do not dwell on the amount remaining on account.  Lung cancer patients take careful measure of the balance.  But, measure for what end?  I believe, if one chooses treatment, then one chooses life.  Rather than dwell on the remaining balance, focus on doing something you enjoy everyday.  I suggest a survivor forget the past, declare the future irrelevant, and live in the day.
    “Get busy living or get busy dying.”
    Stay the course.
  80. Like
    Tom Galli got a reaction from DrBee for a blog entry, 10 Steps to Surviving Lung Cancer from a Survivor   
    MY STEPS TO SURVIVING A LUNG CANCER DIAGNOSIS
    Step 1 – Invest in sophisticated diagnosics before diagnosis
    If you smoke, were a long-term smoker, or are in an occupation that exposes you to carcinogenic toxins (asbestos removal, auto mechanic, painter, etc.), I suggest getting a computed tomography (CT) scan, often called a CAT scan, of the chest once a year. Insurance now covers it and CT will detect tumors far earlier than a chest x-ray. Early detection of small tumors dramatically enhances your survival chances. I had a chest x-ray in January 2004 and was diagnosed with stage 3b, non-small cell lung cancer the following month. The tumor hadn’t shown on the x-ray; but at diagnosis, it was almost 3 inches long and ½ inch in diameter. The only symptom I had was coughing up blood the day before diagnosis. Learn more about early CT screening.
    Step 2 – Choose a good general practitioner 
    Your general practitioner may be the manager of your lung cancer treatment. The GP likely will pick your cancer team and may need to do a little arm-twisting to get things moving. Therefore, there can be great benefits to having a GP who is seasoned and well known in the medical community. I prefer doctors of osteopathic medicine to medical doctors. I’ve found that in my experience the former treat people, not patients. I believe a good physician shows kindness, consideration, and compassion toward those in his or her care. These characteristics are essential. Be sure you know your GP and your GP knows you. Such knowledge and trust will give you a survival edge. There are great health care professionals out there.
    Step 3 – Ensure your oncologist is a physician
    A doctor has a degree in medicine and a license to practice. A physician is devoted to restoring, maintaining, and promoting your good health. My physician oncologist does a complete examination (looks in eyes, nose, and throat, checks pulse in the extremities, checks reflexes, listens to breathing and heart rate) every visit. He reviews and explains all test results and asks how I feel. He looks at me as I speak, and he listens and makes notes on what I say. He carefully explains medical treatment alternatives that may arrest the disease, and together we choose each next step. He never rushes consultations and, consequently, often is late to scheduled appointments. Because his tardiness results from spending time with those he treats, I know he cares about me and every other patient. These are some characteristics your physician oncologist should possess.
    Step 4 – Learn about your disease
    At diagnosis, I had no idea what lung cancer was. Moreover, I didn’t know what an oncologist did, nor could I spell the word! After diagnosis, I read everything I could find about the disease; a good resource is the www.LUNGevity.org website. Then I read medical journals, government reports, research papers, and studies. I made notes about things I didn’t understand and asked questions at my oncology consultations. My wife attended every consultation, procedure, and test to ensure every question was asked and answered, and that we understood the answers. You need to know about type, stage, statistics, radiation, diagnostics, chemotherapy, side effects, surgical options, and so much more. Your chances of survival are improved if you are informed enough to ask highly perceptive questions.
    Step 5 – Acquire a sanguine attitude quickly
    Cancer is a disease of death; lung cancer kills more than all other cancers. Your attitude toward treatment is, I believe, essential to survival. When you acquire a sanguine attitude, your treatment team will notice your optimism. They will enjoy interacting with you; they will care about you. I strongly suggest you read Stephen Jay Gould’s essay “The Median Isn’t the Message” to help you understand survival statistics and find optimism about what appear to be bleak probability of survival projections. Join a cancer blog or messageboard. I am a member of several where I can broadcast my complaints and protestations to people who understand and have useful advice for coping. Find cancer support groups and join one. Most people who treat you have no idea how you are feeling. But survivors in cancer support groups understand; they know how you feel—you’ll fit right in!
    Step 6 – Any port in a storm
    There is no such thing as “a little stick!” During procedures and treatment, almost everyone will attempt to gain access to your veins with an intravenous device of some type. All such intrusions are uncomfortable, and unless the practitioner is good and lucky he or she will miss more often than not. If your treatment involves intravenously administered chemotherapy, you likely will get stuck at least once a week. A good way to avoid discomfort and frustration is to ask for a port. Installation involves simple, low-risk surgery. Once in place, you need to keep the area clean and exercise precautions when bathing—but access to your veins is no longer a storm but a port in a storm!
    Step 7 – Don’t believe the miracle cure
    The consequences of a lung cancer diagnosis are frightening. For most, it will be your first serious encounter with the prospect of death. When you type “lung cancer” into Google, you will be bombarded by advertisement that promises miracle cure at considerable expense. There is no such thing as a miracle cure! Before you invest time (now precious) investigating one of these “too good to be true” remedies, check it out on www.quackwatch.org and discuss it with your physician. Oncology is a medical science. Procedures, drugs, and protocols are tested using scientific methods that are published and reviewed by peers and regulating organizations. When science-based breakthroughs are discovered, they are broadcast very quickly throughout the practitioner community.Read about Steve Jobs—one of the smartest technologists and businessmen the world has ever known—who delayed his cancer treatment.
    Step 8 – Don’t try to tough it out
    I am a retired soldier and believed I was man enough to handle almost anything. Cancer proved to be the “anything” I could not handle! I suffered a long time trying to tough it out before I admitted I was depressed. My physician’s response: “Of course you are depressed—how could you not be?” He prescribed appropriate medication, arranged consultations with a psychologist, and suggested I attend support groups. Unless you are tougher than I, you will experience depression. Admit it and accept help. Here are some other things you might try. Ask for the “freeze spray” before an IV is used. If claustrophobic, get a script for Xanax and take it shortly before scans. Even in summer, wear warm clothing to diagnostic and infusion sessions. Some areas where these take place are kept very cold. Many treatment centers have volunteers—engage one in conversation. Many are survivors or caregivers and have a wealth of helpful information. During consultations, I was so frightened I couldn’t rationally ask questions about results or next steps, and I certainly couldn’t remember what was said. Consequently, I never go alone to a consultation. I suggest if you can, always have someone with you too.
    Step 9 – Become a calendar maniac
    If you have a smartphone with a calendar application, become an expert in its use. If not, keep a paper “cancer calendar” to record information. Your life after diagnosis will likely become filled with scheduled appointments, and given the nature of the disease and intensity of the battle, these are appointments you don’t want to miss. For example, my chemotherapy cycle required an infusion every third Friday. I had to record three rounds of steroid medication taken every six hours before each infusion. I had a scheduled blood test every Monday following infusion. Nausea started Sunday morning and lasted until Tuesday. Joint pain started Wednesday and lasted until Saturday. If I took the nausea medication about an hour before onset, symptoms often were minimal. Furthermore, if I started pain medication a couple of hours before onset, my pain was manageable. I used the alarm feature on my phone to warn me in advance. Plus, there was life to live, and the calendar helped me avoid conflicts between my cancer treatment schedule and my life events schedule.
    Step 10 – Choose to live
    When asked about my cancer experience, I often tell those in treatment that cancer is a disease of life or death. I believe if you choose treatment, you are choosing life. And if you choose to live, do something with the life you are given. The “something” will be different for each of us, but doing whatever you enjoy or find fulfilling is so important. If you enjoyed an activity before diagnosis, do it afterward. Look at yourself in the mirror every morning. If you don’t see an expiration date stamped on your forehead, then enjoy the day and look forward to the next! Oh, by the way, your hair will grow back! Baldness is a beautiful badge of courage.
    Stay the course.
  81. Like
    Tom Galli got a reaction from Roz for a blog entry, 10 Steps to Surviving Lung Cancer from a Survivor   
    MY STEPS TO SURVIVING A LUNG CANCER DIAGNOSIS
    Step 1 – Invest in sophisticated diagnosics before diagnosis
    If you smoke, were a long-term smoker, or are in an occupation that exposes you to carcinogenic toxins (asbestos removal, auto mechanic, painter, etc.), I suggest getting a computed tomography (CT) scan, often called a CAT scan, of the chest once a year. Insurance now covers it and CT will detect tumors far earlier than a chest x-ray. Early detection of small tumors dramatically enhances your survival chances. I had a chest x-ray in January 2004 and was diagnosed with stage 3b, non-small cell lung cancer the following month. The tumor hadn’t shown on the x-ray; but at diagnosis, it was almost 3 inches long and ½ inch in diameter. The only symptom I had was coughing up blood the day before diagnosis. Learn more about early CT screening.
    Step 2 – Choose a good general practitioner 
    Your general practitioner may be the manager of your lung cancer treatment. The GP likely will pick your cancer team and may need to do a little arm-twisting to get things moving. Therefore, there can be great benefits to having a GP who is seasoned and well known in the medical community. I prefer doctors of osteopathic medicine to medical doctors. I’ve found that in my experience the former treat people, not patients. I believe a good physician shows kindness, consideration, and compassion toward those in his or her care. These characteristics are essential. Be sure you know your GP and your GP knows you. Such knowledge and trust will give you a survival edge. There are great health care professionals out there.
    Step 3 – Ensure your oncologist is a physician
    A doctor has a degree in medicine and a license to practice. A physician is devoted to restoring, maintaining, and promoting your good health. My physician oncologist does a complete examination (looks in eyes, nose, and throat, checks pulse in the extremities, checks reflexes, listens to breathing and heart rate) every visit. He reviews and explains all test results and asks how I feel. He looks at me as I speak, and he listens and makes notes on what I say. He carefully explains medical treatment alternatives that may arrest the disease, and together we choose each next step. He never rushes consultations and, consequently, often is late to scheduled appointments. Because his tardiness results from spending time with those he treats, I know he cares about me and every other patient. These are some characteristics your physician oncologist should possess.
    Step 4 – Learn about your disease
    At diagnosis, I had no idea what lung cancer was. Moreover, I didn’t know what an oncologist did, nor could I spell the word! After diagnosis, I read everything I could find about the disease; a good resource is the www.LUNGevity.org website. Then I read medical journals, government reports, research papers, and studies. I made notes about things I didn’t understand and asked questions at my oncology consultations. My wife attended every consultation, procedure, and test to ensure every question was asked and answered, and that we understood the answers. You need to know about type, stage, statistics, radiation, diagnostics, chemotherapy, side effects, surgical options, and so much more. Your chances of survival are improved if you are informed enough to ask highly perceptive questions.
    Step 5 – Acquire a sanguine attitude quickly
    Cancer is a disease of death; lung cancer kills more than all other cancers. Your attitude toward treatment is, I believe, essential to survival. When you acquire a sanguine attitude, your treatment team will notice your optimism. They will enjoy interacting with you; they will care about you. I strongly suggest you read Stephen Jay Gould’s essay “The Median Isn’t the Message” to help you understand survival statistics and find optimism about what appear to be bleak probability of survival projections. Join a cancer blog or messageboard. I am a member of several where I can broadcast my complaints and protestations to people who understand and have useful advice for coping. Find cancer support groups and join one. Most people who treat you have no idea how you are feeling. But survivors in cancer support groups understand; they know how you feel—you’ll fit right in!
    Step 6 – Any port in a storm
    There is no such thing as “a little stick!” During procedures and treatment, almost everyone will attempt to gain access to your veins with an intravenous device of some type. All such intrusions are uncomfortable, and unless the practitioner is good and lucky he or she will miss more often than not. If your treatment involves intravenously administered chemotherapy, you likely will get stuck at least once a week. A good way to avoid discomfort and frustration is to ask for a port. Installation involves simple, low-risk surgery. Once in place, you need to keep the area clean and exercise precautions when bathing—but access to your veins is no longer a storm but a port in a storm!
    Step 7 – Don’t believe the miracle cure
    The consequences of a lung cancer diagnosis are frightening. For most, it will be your first serious encounter with the prospect of death. When you type “lung cancer” into Google, you will be bombarded by advertisement that promises miracle cure at considerable expense. There is no such thing as a miracle cure! Before you invest time (now precious) investigating one of these “too good to be true” remedies, check it out on www.quackwatch.org and discuss it with your physician. Oncology is a medical science. Procedures, drugs, and protocols are tested using scientific methods that are published and reviewed by peers and regulating organizations. When science-based breakthroughs are discovered, they are broadcast very quickly throughout the practitioner community.Read about Steve Jobs—one of the smartest technologists and businessmen the world has ever known—who delayed his cancer treatment.
    Step 8 – Don’t try to tough it out
    I am a retired soldier and believed I was man enough to handle almost anything. Cancer proved to be the “anything” I could not handle! I suffered a long time trying to tough it out before I admitted I was depressed. My physician’s response: “Of course you are depressed—how could you not be?” He prescribed appropriate medication, arranged consultations with a psychologist, and suggested I attend support groups. Unless you are tougher than I, you will experience depression. Admit it and accept help. Here are some other things you might try. Ask for the “freeze spray” before an IV is used. If claustrophobic, get a script for Xanax and take it shortly before scans. Even in summer, wear warm clothing to diagnostic and infusion sessions. Some areas where these take place are kept very cold. Many treatment centers have volunteers—engage one in conversation. Many are survivors or caregivers and have a wealth of helpful information. During consultations, I was so frightened I couldn’t rationally ask questions about results or next steps, and I certainly couldn’t remember what was said. Consequently, I never go alone to a consultation. I suggest if you can, always have someone with you too.
    Step 9 – Become a calendar maniac
    If you have a smartphone with a calendar application, become an expert in its use. If not, keep a paper “cancer calendar” to record information. Your life after diagnosis will likely become filled with scheduled appointments, and given the nature of the disease and intensity of the battle, these are appointments you don’t want to miss. For example, my chemotherapy cycle required an infusion every third Friday. I had to record three rounds of steroid medication taken every six hours before each infusion. I had a scheduled blood test every Monday following infusion. Nausea started Sunday morning and lasted until Tuesday. Joint pain started Wednesday and lasted until Saturday. If I took the nausea medication about an hour before onset, symptoms often were minimal. Furthermore, if I started pain medication a couple of hours before onset, my pain was manageable. I used the alarm feature on my phone to warn me in advance. Plus, there was life to live, and the calendar helped me avoid conflicts between my cancer treatment schedule and my life events schedule.
    Step 10 – Choose to live
    When asked about my cancer experience, I often tell those in treatment that cancer is a disease of life or death. I believe if you choose treatment, you are choosing life. And if you choose to live, do something with the life you are given. The “something” will be different for each of us, but doing whatever you enjoy or find fulfilling is so important. If you enjoyed an activity before diagnosis, do it afterward. Look at yourself in the mirror every morning. If you don’t see an expiration date stamped on your forehead, then enjoy the day and look forward to the next! Oh, by the way, your hair will grow back! Baldness is a beautiful badge of courage.
    Stay the course.
  82. Like
    Tom Galli got a reaction from PaulaC for a blog entry, Ninety Percent Mental   
    Summer has ended and baseball is in World Series mode.  I’m a long suffering Philadelphia Phillies fan — a Phanatic!  To have a lifelong fascination with a mediocre baseball club requires supreme dedication, unusual perseverance, and a strong conviction that tomorrow will be a far better day.  These attributes are prerequisites for facing a daunting lung cancer diagnosis and enduring the arduousness of treatment.
    Danny Ozark, once manager of the Phillies, took the team from perennial cellar dwellers to contenders. He explained his formula for success thusly: “Half this game is ninety percent mental!” Dismissing the missing half, the same can be said of life after lung cancer treatment.
    Presume diagnostic and treatment routines of lung cancer are largely similar; the unique and difficult challenges occur post treatment.  Adding Ozark’s missing half, coping with post treatment life challenge "is ninety percent mental.”  Individually, each will face a distinct challenge set but universally, life will be different than life before treatment. How so?
    First was a misplaced expectation to return to pre-diagnostic life. After NED, there were so many things I could no longer do. It took a while to realize I needed to carve out a new lifestyle. There is a new normal life after lung cancer, but the mental challenge is finding it. No one gives you new normal; you have to make it.
    Several side effects became chronic conditions. Coping becomes a mental challenge. Everyday, I play a round of mind over matter. Most days my mind wins but I have to live with losing days.  Too many in a row and I need help.  Fortunately, my wife is a godsend. Plan to have someone trusted close by.  
    I’ve learned to go well out of my way to avoid confrontation. There are no “civil” discussion these days.  There is disagreement, branding, insult and anger.  My spin cycle goes one step farther to pain.  If I walk away, I may have a good day.  I won’t if I don’t. I’ve learned to control how I feel about something and not caring enough to have an opinion works well indeed.
    My new normal life is both challenging and enjoyable.  Achieving that state involves application of Danny Ozark’s recipe for baseball success — new normal life “is ninety percent mental.”
    Stay the course.
  83. Like
    Tom Galli got a reaction from Judy M. for a blog entry, Ninety Percent Mental   
    Summer has ended and baseball is in World Series mode.  I’m a long suffering Philadelphia Phillies fan — a Phanatic!  To have a lifelong fascination with a mediocre baseball club requires supreme dedication, unusual perseverance, and a strong conviction that tomorrow will be a far better day.  These attributes are prerequisites for facing a daunting lung cancer diagnosis and enduring the arduousness of treatment.
    Danny Ozark, once manager of the Phillies, took the team from perennial cellar dwellers to contenders. He explained his formula for success thusly: “Half this game is ninety percent mental!” Dismissing the missing half, the same can be said of life after lung cancer treatment.
    Presume diagnostic and treatment routines of lung cancer are largely similar; the unique and difficult challenges occur post treatment.  Adding Ozark’s missing half, coping with post treatment life challenge "is ninety percent mental.”  Individually, each will face a distinct challenge set but universally, life will be different than life before treatment. How so?
    First was a misplaced expectation to return to pre-diagnostic life. After NED, there were so many things I could no longer do. It took a while to realize I needed to carve out a new lifestyle. There is a new normal life after lung cancer, but the mental challenge is finding it. No one gives you new normal; you have to make it.
    Several side effects became chronic conditions. Coping becomes a mental challenge. Everyday, I play a round of mind over matter. Most days my mind wins but I have to live with losing days.  Too many in a row and I need help.  Fortunately, my wife is a godsend. Plan to have someone trusted close by.  
    I’ve learned to go well out of my way to avoid confrontation. There are no “civil” discussion these days.  There is disagreement, branding, insult and anger.  My spin cycle goes one step farther to pain.  If I walk away, I may have a good day.  I won’t if I don’t. I’ve learned to control how I feel about something and not caring enough to have an opinion works well indeed.
    My new normal life is both challenging and enjoyable.  Achieving that state involves application of Danny Ozark’s recipe for baseball success — new normal life “is ninety percent mental.”
    Stay the course.
  84. Like
    Tom Galli got a reaction from MBinOregon for a blog entry, 10 Steps to Surviving Lung Cancer from a Survivor   
    MY STEPS TO SURVIVING A LUNG CANCER DIAGNOSIS
    Step 1 – Invest in sophisticated diagnosics before diagnosis
    If you smoke, were a long-term smoker, or are in an occupation that exposes you to carcinogenic toxins (asbestos removal, auto mechanic, painter, etc.), I suggest getting a computed tomography (CT) scan, often called a CAT scan, of the chest once a year. Insurance now covers it and CT will detect tumors far earlier than a chest x-ray. Early detection of small tumors dramatically enhances your survival chances. I had a chest x-ray in January 2004 and was diagnosed with stage 3b, non-small cell lung cancer the following month. The tumor hadn’t shown on the x-ray; but at diagnosis, it was almost 3 inches long and ½ inch in diameter. The only symptom I had was coughing up blood the day before diagnosis. Learn more about early CT screening.
    Step 2 – Choose a good general practitioner 
    Your general practitioner may be the manager of your lung cancer treatment. The GP likely will pick your cancer team and may need to do a little arm-twisting to get things moving. Therefore, there can be great benefits to having a GP who is seasoned and well known in the medical community. I prefer doctors of osteopathic medicine to medical doctors. I’ve found that in my experience the former treat people, not patients. I believe a good physician shows kindness, consideration, and compassion toward those in his or her care. These characteristics are essential. Be sure you know your GP and your GP knows you. Such knowledge and trust will give you a survival edge. There are great health care professionals out there.
    Step 3 – Ensure your oncologist is a physician
    A doctor has a degree in medicine and a license to practice. A physician is devoted to restoring, maintaining, and promoting your good health. My physician oncologist does a complete examination (looks in eyes, nose, and throat, checks pulse in the extremities, checks reflexes, listens to breathing and heart rate) every visit. He reviews and explains all test results and asks how I feel. He looks at me as I speak, and he listens and makes notes on what I say. He carefully explains medical treatment alternatives that may arrest the disease, and together we choose each next step. He never rushes consultations and, consequently, often is late to scheduled appointments. Because his tardiness results from spending time with those he treats, I know he cares about me and every other patient. These are some characteristics your physician oncologist should possess.
    Step 4 – Learn about your disease
    At diagnosis, I had no idea what lung cancer was. Moreover, I didn’t know what an oncologist did, nor could I spell the word! After diagnosis, I read everything I could find about the disease; a good resource is the www.LUNGevity.org website. Then I read medical journals, government reports, research papers, and studies. I made notes about things I didn’t understand and asked questions at my oncology consultations. My wife attended every consultation, procedure, and test to ensure every question was asked and answered, and that we understood the answers. You need to know about type, stage, statistics, radiation, diagnostics, chemotherapy, side effects, surgical options, and so much more. Your chances of survival are improved if you are informed enough to ask highly perceptive questions.
    Step 5 – Acquire a sanguine attitude quickly
    Cancer is a disease of death; lung cancer kills more than all other cancers. Your attitude toward treatment is, I believe, essential to survival. When you acquire a sanguine attitude, your treatment team will notice your optimism. They will enjoy interacting with you; they will care about you. I strongly suggest you read Stephen Jay Gould’s essay “The Median Isn’t the Message” to help you understand survival statistics and find optimism about what appear to be bleak probability of survival projections. Join a cancer blog or messageboard. I am a member of several where I can broadcast my complaints and protestations to people who understand and have useful advice for coping. Find cancer support groups and join one. Most people who treat you have no idea how you are feeling. But survivors in cancer support groups understand; they know how you feel—you’ll fit right in!
    Step 6 – Any port in a storm
    There is no such thing as “a little stick!” During procedures and treatment, almost everyone will attempt to gain access to your veins with an intravenous device of some type. All such intrusions are uncomfortable, and unless the practitioner is good and lucky he or she will miss more often than not. If your treatment involves intravenously administered chemotherapy, you likely will get stuck at least once a week. A good way to avoid discomfort and frustration is to ask for a port. Installation involves simple, low-risk surgery. Once in place, you need to keep the area clean and exercise precautions when bathing—but access to your veins is no longer a storm but a port in a storm!
    Step 7 – Don’t believe the miracle cure
    The consequences of a lung cancer diagnosis are frightening. For most, it will be your first serious encounter with the prospect of death. When you type “lung cancer” into Google, you will be bombarded by advertisement that promises miracle cure at considerable expense. There is no such thing as a miracle cure! Before you invest time (now precious) investigating one of these “too good to be true” remedies, check it out on www.quackwatch.org and discuss it with your physician. Oncology is a medical science. Procedures, drugs, and protocols are tested using scientific methods that are published and reviewed by peers and regulating organizations. When science-based breakthroughs are discovered, they are broadcast very quickly throughout the practitioner community.Read about Steve Jobs—one of the smartest technologists and businessmen the world has ever known—who delayed his cancer treatment.
    Step 8 – Don’t try to tough it out
    I am a retired soldier and believed I was man enough to handle almost anything. Cancer proved to be the “anything” I could not handle! I suffered a long time trying to tough it out before I admitted I was depressed. My physician’s response: “Of course you are depressed—how could you not be?” He prescribed appropriate medication, arranged consultations with a psychologist, and suggested I attend support groups. Unless you are tougher than I, you will experience depression. Admit it and accept help. Here are some other things you might try. Ask for the “freeze spray” before an IV is used. If claustrophobic, get a script for Xanax and take it shortly before scans. Even in summer, wear warm clothing to diagnostic and infusion sessions. Some areas where these take place are kept very cold. Many treatment centers have volunteers—engage one in conversation. Many are survivors or caregivers and have a wealth of helpful information. During consultations, I was so frightened I couldn’t rationally ask questions about results or next steps, and I certainly couldn’t remember what was said. Consequently, I never go alone to a consultation. I suggest if you can, always have someone with you too.
    Step 9 – Become a calendar maniac
    If you have a smartphone with a calendar application, become an expert in its use. If not, keep a paper “cancer calendar” to record information. Your life after diagnosis will likely become filled with scheduled appointments, and given the nature of the disease and intensity of the battle, these are appointments you don’t want to miss. For example, my chemotherapy cycle required an infusion every third Friday. I had to record three rounds of steroid medication taken every six hours before each infusion. I had a scheduled blood test every Monday following infusion. Nausea started Sunday morning and lasted until Tuesday. Joint pain started Wednesday and lasted until Saturday. If I took the nausea medication about an hour before onset, symptoms often were minimal. Furthermore, if I started pain medication a couple of hours before onset, my pain was manageable. I used the alarm feature on my phone to warn me in advance. Plus, there was life to live, and the calendar helped me avoid conflicts between my cancer treatment schedule and my life events schedule.
    Step 10 – Choose to live
    When asked about my cancer experience, I often tell those in treatment that cancer is a disease of life or death. I believe if you choose treatment, you are choosing life. And if you choose to live, do something with the life you are given. The “something” will be different for each of us, but doing whatever you enjoy or find fulfilling is so important. If you enjoyed an activity before diagnosis, do it afterward. Look at yourself in the mirror every morning. If you don’t see an expiration date stamped on your forehead, then enjoy the day and look forward to the next! Oh, by the way, your hair will grow back! Baldness is a beautiful badge of courage.
    Stay the course.
  85. Like
    Tom Galli got a reaction from Kathy P. for a blog entry, Ninety Percent Mental   
    Summer has ended and baseball is in World Series mode.  I’m a long suffering Philadelphia Phillies fan — a Phanatic!  To have a lifelong fascination with a mediocre baseball club requires supreme dedication, unusual perseverance, and a strong conviction that tomorrow will be a far better day.  These attributes are prerequisites for facing a daunting lung cancer diagnosis and enduring the arduousness of treatment.
    Danny Ozark, once manager of the Phillies, took the team from perennial cellar dwellers to contenders. He explained his formula for success thusly: “Half this game is ninety percent mental!” Dismissing the missing half, the same can be said of life after lung cancer treatment.
    Presume diagnostic and treatment routines of lung cancer are largely similar; the unique and difficult challenges occur post treatment.  Adding Ozark’s missing half, coping with post treatment life challenge "is ninety percent mental.”  Individually, each will face a distinct challenge set but universally, life will be different than life before treatment. How so?
    First was a misplaced expectation to return to pre-diagnostic life. After NED, there were so many things I could no longer do. It took a while to realize I needed to carve out a new lifestyle. There is a new normal life after lung cancer, but the mental challenge is finding it. No one gives you new normal; you have to make it.
    Several side effects became chronic conditions. Coping becomes a mental challenge. Everyday, I play a round of mind over matter. Most days my mind wins but I have to live with losing days.  Too many in a row and I need help.  Fortunately, my wife is a godsend. Plan to have someone trusted close by.  
    I’ve learned to go well out of my way to avoid confrontation. There are no “civil” discussion these days.  There is disagreement, branding, insult and anger.  My spin cycle goes one step farther to pain.  If I walk away, I may have a good day.  I won’t if I don’t. I’ve learned to control how I feel about something and not caring enough to have an opinion works well indeed.
    My new normal life is both challenging and enjoyable.  Achieving that state involves application of Danny Ozark’s recipe for baseball success — new normal life “is ninety percent mental.”
    Stay the course.
  86. Like
    Tom Galli got a reaction from LexieCat for a blog entry, 10 Steps to Surviving Lung Cancer from a Survivor   
    MY STEPS TO SURVIVING A LUNG CANCER DIAGNOSIS
    Step 1 – Invest in sophisticated diagnosics before diagnosis
    If you smoke, were a long-term smoker, or are in an occupation that exposes you to carcinogenic toxins (asbestos removal, auto mechanic, painter, etc.), I suggest getting a computed tomography (CT) scan, often called a CAT scan, of the chest once a year. Insurance now covers it and CT will detect tumors far earlier than a chest x-ray. Early detection of small tumors dramatically enhances your survival chances. I had a chest x-ray in January 2004 and was diagnosed with stage 3b, non-small cell lung cancer the following month. The tumor hadn’t shown on the x-ray; but at diagnosis, it was almost 3 inches long and ½ inch in diameter. The only symptom I had was coughing up blood the day before diagnosis. Learn more about early CT screening.
    Step 2 – Choose a good general practitioner 
    Your general practitioner may be the manager of your lung cancer treatment. The GP likely will pick your cancer team and may need to do a little arm-twisting to get things moving. Therefore, there can be great benefits to having a GP who is seasoned and well known in the medical community. I prefer doctors of osteopathic medicine to medical doctors. I’ve found that in my experience the former treat people, not patients. I believe a good physician shows kindness, consideration, and compassion toward those in his or her care. These characteristics are essential. Be sure you know your GP and your GP knows you. Such knowledge and trust will give you a survival edge. There are great health care professionals out there.
    Step 3 – Ensure your oncologist is a physician
    A doctor has a degree in medicine and a license to practice. A physician is devoted to restoring, maintaining, and promoting your good health. My physician oncologist does a complete examination (looks in eyes, nose, and throat, checks pulse in the extremities, checks reflexes, listens to breathing and heart rate) every visit. He reviews and explains all test results and asks how I feel. He looks at me as I speak, and he listens and makes notes on what I say. He carefully explains medical treatment alternatives that may arrest the disease, and together we choose each next step. He never rushes consultations and, consequently, often is late to scheduled appointments. Because his tardiness results from spending time with those he treats, I know he cares about me and every other patient. These are some characteristics your physician oncologist should possess.
    Step 4 – Learn about your disease
    At diagnosis, I had no idea what lung cancer was. Moreover, I didn’t know what an oncologist did, nor could I spell the word! After diagnosis, I read everything I could find about the disease; a good resource is the www.LUNGevity.org website. Then I read medical journals, government reports, research papers, and studies. I made notes about things I didn’t understand and asked questions at my oncology consultations. My wife attended every consultation, procedure, and test to ensure every question was asked and answered, and that we understood the answers. You need to know about type, stage, statistics, radiation, diagnostics, chemotherapy, side effects, surgical options, and so much more. Your chances of survival are improved if you are informed enough to ask highly perceptive questions.
    Step 5 – Acquire a sanguine attitude quickly
    Cancer is a disease of death; lung cancer kills more than all other cancers. Your attitude toward treatment is, I believe, essential to survival. When you acquire a sanguine attitude, your treatment team will notice your optimism. They will enjoy interacting with you; they will care about you. I strongly suggest you read Stephen Jay Gould’s essay “The Median Isn’t the Message” to help you understand survival statistics and find optimism about what appear to be bleak probability of survival projections. Join a cancer blog or messageboard. I am a member of several where I can broadcast my complaints and protestations to people who understand and have useful advice for coping. Find cancer support groups and join one. Most people who treat you have no idea how you are feeling. But survivors in cancer support groups understand; they know how you feel—you’ll fit right in!
    Step 6 – Any port in a storm
    There is no such thing as “a little stick!” During procedures and treatment, almost everyone will attempt to gain access to your veins with an intravenous device of some type. All such intrusions are uncomfortable, and unless the practitioner is good and lucky he or she will miss more often than not. If your treatment involves intravenously administered chemotherapy, you likely will get stuck at least once a week. A good way to avoid discomfort and frustration is to ask for a port. Installation involves simple, low-risk surgery. Once in place, you need to keep the area clean and exercise precautions when bathing—but access to your veins is no longer a storm but a port in a storm!
    Step 7 – Don’t believe the miracle cure
    The consequences of a lung cancer diagnosis are frightening. For most, it will be your first serious encounter with the prospect of death. When you type “lung cancer” into Google, you will be bombarded by advertisement that promises miracle cure at considerable expense. There is no such thing as a miracle cure! Before you invest time (now precious) investigating one of these “too good to be true” remedies, check it out on www.quackwatch.org and discuss it with your physician. Oncology is a medical science. Procedures, drugs, and protocols are tested using scientific methods that are published and reviewed by peers and regulating organizations. When science-based breakthroughs are discovered, they are broadcast very quickly throughout the practitioner community.Read about Steve Jobs—one of the smartest technologists and businessmen the world has ever known—who delayed his cancer treatment.
    Step 8 – Don’t try to tough it out
    I am a retired soldier and believed I was man enough to handle almost anything. Cancer proved to be the “anything” I could not handle! I suffered a long time trying to tough it out before I admitted I was depressed. My physician’s response: “Of course you are depressed—how could you not be?” He prescribed appropriate medication, arranged consultations with a psychologist, and suggested I attend support groups. Unless you are tougher than I, you will experience depression. Admit it and accept help. Here are some other things you might try. Ask for the “freeze spray” before an IV is used. If claustrophobic, get a script for Xanax and take it shortly before scans. Even in summer, wear warm clothing to diagnostic and infusion sessions. Some areas where these take place are kept very cold. Many treatment centers have volunteers—engage one in conversation. Many are survivors or caregivers and have a wealth of helpful information. During consultations, I was so frightened I couldn’t rationally ask questions about results or next steps, and I certainly couldn’t remember what was said. Consequently, I never go alone to a consultation. I suggest if you can, always have someone with you too.
    Step 9 – Become a calendar maniac
    If you have a smartphone with a calendar application, become an expert in its use. If not, keep a paper “cancer calendar” to record information. Your life after diagnosis will likely become filled with scheduled appointments, and given the nature of the disease and intensity of the battle, these are appointments you don’t want to miss. For example, my chemotherapy cycle required an infusion every third Friday. I had to record three rounds of steroid medication taken every six hours before each infusion. I had a scheduled blood test every Monday following infusion. Nausea started Sunday morning and lasted until Tuesday. Joint pain started Wednesday and lasted until Saturday. If I took the nausea medication about an hour before onset, symptoms often were minimal. Furthermore, if I started pain medication a couple of hours before onset, my pain was manageable. I used the alarm feature on my phone to warn me in advance. Plus, there was life to live, and the calendar helped me avoid conflicts between my cancer treatment schedule and my life events schedule.
    Step 10 – Choose to live
    When asked about my cancer experience, I often tell those in treatment that cancer is a disease of life or death. I believe if you choose treatment, you are choosing life. And if you choose to live, do something with the life you are given. The “something” will be different for each of us, but doing whatever you enjoy or find fulfilling is so important. If you enjoyed an activity before diagnosis, do it afterward. Look at yourself in the mirror every morning. If you don’t see an expiration date stamped on your forehead, then enjoy the day and look forward to the next! Oh, by the way, your hair will grow back! Baldness is a beautiful badge of courage.
    Stay the course.
  87. Like
    Tom Galli got a reaction from JustMe for a blog entry, Hope Is A Good Thing   
    Red, in white shirt and loose thin-black tie and sweating in Maine’s summer heat, is leaning on a rock-wall fence.  He’s just opened Andy’s letter found under the black obsidian rock.  In the background we hear Andy reading his evocative description of hope: “Remember Red, hope is a good thing, maybe the best of things and no good thing ever dies.” The movie Shawshank Redemption is a powerful story about hope and life with a message that should resonate with every lung cancer survivor.
    I watched the movie the other day and made the connection.  Andy was imprisoned for two life sentences with no possibility of parole.  He was wrongly convicted of murder and throughout the story of his day-to-day life in prison, everyone tells him “hope is a dangerous thing.”  On escaping, Andy proclaims that hope is “maybe the best of things.”  The movie story line is exactly parallel to the plight of the late-stage diagnosed lung cancer patient ⎯- an unforgiving disease with hope as the most effective means of avoiding consequences.
    For lung cancer, hope is not a medical remedy.  While new lung cancer treatments are emerging more frequently now, basic research funding to diagnose and treat lung cancer lags other cancers.  Perhaps the pace may pick up, one hopes.  Perhaps a treatment may emerge just in time to save a life, one hopes.  Perhaps a miracle remission occurs, one hopes.  Hope may not be a medical remedy but, for many of us, it is our only effective medicament.  And, in my case, hope is “maybe the best of things.” 
    Recall the story line of Shawshank.  Andy’s future is confinement in a mind numbing institution, but he makes a choice to live in a different reality and works diligently, every day, on a novel escape plan. He makes a conscious decision to live.  He embraces the hope of escape against all odds.  Andy’s poignant characterization about life reveals his reasoning: “I guess it comes down to a simple choice, really.  Get busy living or get busy dying.”  Exactly!
    Sometimes in the heat of lung cancer treatment, we forget its purpose ⎯- extended life.  No one knows how long but life for most is extended. So what do we do with the extension?  Re-read Andy’s characterization.
    We long for a period of life extending into satisfying old age.  But most without lung cancer do not dwell on the amount remaining on account.  Lung cancer patients take careful measure of the balance.  But, measure for what end?  I believe, if one chooses treatment, then one chooses life.  Rather than dwell on the remaining balance, focus on doing something you enjoy everyday.  I suggest a survivor forget the past, declare the future irrelevant, and live in the day.
    “Get busy living or get busy dying.”
    Stay the course.
  88. Like
    Tom Galli got a reaction from Julie in SoCal for a blog entry, 10 Steps to Surviving Lung Cancer from a Survivor   
    MY STEPS TO SURVIVING A LUNG CANCER DIAGNOSIS
    Step 1 – Invest in sophisticated diagnosics before diagnosis
    If you smoke, were a long-term smoker, or are in an occupation that exposes you to carcinogenic toxins (asbestos removal, auto mechanic, painter, etc.), I suggest getting a computed tomography (CT) scan, often called a CAT scan, of the chest once a year. Insurance now covers it and CT will detect tumors far earlier than a chest x-ray. Early detection of small tumors dramatically enhances your survival chances. I had a chest x-ray in January 2004 and was diagnosed with stage 3b, non-small cell lung cancer the following month. The tumor hadn’t shown on the x-ray; but at diagnosis, it was almost 3 inches long and ½ inch in diameter. The only symptom I had was coughing up blood the day before diagnosis. Learn more about early CT screening.
    Step 2 – Choose a good general practitioner 
    Your general practitioner may be the manager of your lung cancer treatment. The GP likely will pick your cancer team and may need to do a little arm-twisting to get things moving. Therefore, there can be great benefits to having a GP who is seasoned and well known in the medical community. I prefer doctors of osteopathic medicine to medical doctors. I’ve found that in my experience the former treat people, not patients. I believe a good physician shows kindness, consideration, and compassion toward those in his or her care. These characteristics are essential. Be sure you know your GP and your GP knows you. Such knowledge and trust will give you a survival edge. There are great health care professionals out there.
    Step 3 – Ensure your oncologist is a physician
    A doctor has a degree in medicine and a license to practice. A physician is devoted to restoring, maintaining, and promoting your good health. My physician oncologist does a complete examination (looks in eyes, nose, and throat, checks pulse in the extremities, checks reflexes, listens to breathing and heart rate) every visit. He reviews and explains all test results and asks how I feel. He looks at me as I speak, and he listens and makes notes on what I say. He carefully explains medical treatment alternatives that may arrest the disease, and together we choose each next step. He never rushes consultations and, consequently, often is late to scheduled appointments. Because his tardiness results from spending time with those he treats, I know he cares about me and every other patient. These are some characteristics your physician oncologist should possess.
    Step 4 – Learn about your disease
    At diagnosis, I had no idea what lung cancer was. Moreover, I didn’t know what an oncologist did, nor could I spell the word! After diagnosis, I read everything I could find about the disease; a good resource is the www.LUNGevity.org website. Then I read medical journals, government reports, research papers, and studies. I made notes about things I didn’t understand and asked questions at my oncology consultations. My wife attended every consultation, procedure, and test to ensure every question was asked and answered, and that we understood the answers. You need to know about type, stage, statistics, radiation, diagnostics, chemotherapy, side effects, surgical options, and so much more. Your chances of survival are improved if you are informed enough to ask highly perceptive questions.
    Step 5 – Acquire a sanguine attitude quickly
    Cancer is a disease of death; lung cancer kills more than all other cancers. Your attitude toward treatment is, I believe, essential to survival. When you acquire a sanguine attitude, your treatment team will notice your optimism. They will enjoy interacting with you; they will care about you. I strongly suggest you read Stephen Jay Gould’s essay “The Median Isn’t the Message” to help you understand survival statistics and find optimism about what appear to be bleak probability of survival projections. Join a cancer blog or messageboard. I am a member of several where I can broadcast my complaints and protestations to people who understand and have useful advice for coping. Find cancer support groups and join one. Most people who treat you have no idea how you are feeling. But survivors in cancer support groups understand; they know how you feel—you’ll fit right in!
    Step 6 – Any port in a storm
    There is no such thing as “a little stick!” During procedures and treatment, almost everyone will attempt to gain access to your veins with an intravenous device of some type. All such intrusions are uncomfortable, and unless the practitioner is good and lucky he or she will miss more often than not. If your treatment involves intravenously administered chemotherapy, you likely will get stuck at least once a week. A good way to avoid discomfort and frustration is to ask for a port. Installation involves simple, low-risk surgery. Once in place, you need to keep the area clean and exercise precautions when bathing—but access to your veins is no longer a storm but a port in a storm!
    Step 7 – Don’t believe the miracle cure
    The consequences of a lung cancer diagnosis are frightening. For most, it will be your first serious encounter with the prospect of death. When you type “lung cancer” into Google, you will be bombarded by advertisement that promises miracle cure at considerable expense. There is no such thing as a miracle cure! Before you invest time (now precious) investigating one of these “too good to be true” remedies, check it out on www.quackwatch.org and discuss it with your physician. Oncology is a medical science. Procedures, drugs, and protocols are tested using scientific methods that are published and reviewed by peers and regulating organizations. When science-based breakthroughs are discovered, they are broadcast very quickly throughout the practitioner community.Read about Steve Jobs—one of the smartest technologists and businessmen the world has ever known—who delayed his cancer treatment.
    Step 8 – Don’t try to tough it out
    I am a retired soldier and believed I was man enough to handle almost anything. Cancer proved to be the “anything” I could not handle! I suffered a long time trying to tough it out before I admitted I was depressed. My physician’s response: “Of course you are depressed—how could you not be?” He prescribed appropriate medication, arranged consultations with a psychologist, and suggested I attend support groups. Unless you are tougher than I, you will experience depression. Admit it and accept help. Here are some other things you might try. Ask for the “freeze spray” before an IV is used. If claustrophobic, get a script for Xanax and take it shortly before scans. Even in summer, wear warm clothing to diagnostic and infusion sessions. Some areas where these take place are kept very cold. Many treatment centers have volunteers—engage one in conversation. Many are survivors or caregivers and have a wealth of helpful information. During consultations, I was so frightened I couldn’t rationally ask questions about results or next steps, and I certainly couldn’t remember what was said. Consequently, I never go alone to a consultation. I suggest if you can, always have someone with you too.
    Step 9 – Become a calendar maniac
    If you have a smartphone with a calendar application, become an expert in its use. If not, keep a paper “cancer calendar” to record information. Your life after diagnosis will likely become filled with scheduled appointments, and given the nature of the disease and intensity of the battle, these are appointments you don’t want to miss. For example, my chemotherapy cycle required an infusion every third Friday. I had to record three rounds of steroid medication taken every six hours before each infusion. I had a scheduled blood test every Monday following infusion. Nausea started Sunday morning and lasted until Tuesday. Joint pain started Wednesday and lasted until Saturday. If I took the nausea medication about an hour before onset, symptoms often were minimal. Furthermore, if I started pain medication a couple of hours before onset, my pain was manageable. I used the alarm feature on my phone to warn me in advance. Plus, there was life to live, and the calendar helped me avoid conflicts between my cancer treatment schedule and my life events schedule.
    Step 10 – Choose to live
    When asked about my cancer experience, I often tell those in treatment that cancer is a disease of life or death. I believe if you choose treatment, you are choosing life. And if you choose to live, do something with the life you are given. The “something” will be different for each of us, but doing whatever you enjoy or find fulfilling is so important. If you enjoyed an activity before diagnosis, do it afterward. Look at yourself in the mirror every morning. If you don’t see an expiration date stamped on your forehead, then enjoy the day and look forward to the next! Oh, by the way, your hair will grow back! Baldness is a beautiful badge of courage.
    Stay the course.
  89. Like
    Tom Galli got a reaction from Judy M. for a blog entry, Uncertain Treatment Outcomes: A Baseball Model   
    Baseball is a game that requires patient players and fans. Like lung cancer treatment, there is a lot of waiting for something to happen. Also like lung cancer, the game is unpredictable. A single pitch can change the outcome of a game like a single cell can change the outcome of treatment. And like lung cancer, baseball has many uncertainties and these are defined by odds. The best hitters succeed a little better than one in three times; the best teams winning about six in ten games. Baseball players need to persevere against low odds of success to achieve victory. So do lung cancer patients.
    A lung cancer diagnosis is devastating. Recurrence after treatment is common and traumatizing. We ought to prepare for the distress of recurrence. Treatment, even for those diagnosed at early stage, is not likely to be a walk-off home run. I was not prepared for treatment failure. How common is recurrence?
    A National Cancer Institute study suggests about 33 percent of stage IA and IB patients experience a reoccurrence. Up to 66 percent of stage IIA, IIB, or IIIA experience a reoccurrence. Interestingly, these percentages are virtually identical for both adenocarcinoma and squamous cell lung cancers. What about stage IIIB or IV disease? The study reports recurrence about half that of lower stages but suggests this is due to competing risk of mortality.
    Including surgery, my treatment success average was a dismal 1 for 5. That translates to a baseball batting average of .200, yielding a quick trip to the minor leagues. I had four recurrences after no evidence of disease (NED) treatments. We didn’t know perseverance was a requirement and we were not prepared.
    How should we prepare? Here is what I didn’t do. Have a frank conversation with my oncologist seeking information on recurrence likelihood. Share this information with my family to ensure they were prepared for bad news. Finally, celebrate my NED state by fully engaging in life. NED is that extra life treatment buys and we did not take maximum advantage of it. 
    A sidebar benefit of surviving is accumulating lessons learned. I now completely understand that lung cancer is a persistent malady that is difficult to eradicate with unpredictable treatment outcomes. Like the best baseball players, we need to take our turn at each new treatment with a fresh perspective, forgetting our last experience and striving only to put the ball in play and arrest our disease. 
    Stay the course.
  90. Like
    Tom Galli got a reaction from Suzanne for a blog entry, Uncertain Treatment Outcomes: A Baseball Model   
    Baseball is a game that requires patient players and fans. Like lung cancer treatment, there is a lot of waiting for something to happen. Also like lung cancer, the game is unpredictable. A single pitch can change the outcome of a game like a single cell can change the outcome of treatment. And like lung cancer, baseball has many uncertainties and these are defined by odds. The best hitters succeed a little better than one in three times; the best teams winning about six in ten games. Baseball players need to persevere against low odds of success to achieve victory. So do lung cancer patients.
    A lung cancer diagnosis is devastating. Recurrence after treatment is common and traumatizing. We ought to prepare for the distress of recurrence. Treatment, even for those diagnosed at early stage, is not likely to be a walk-off home run. I was not prepared for treatment failure. How common is recurrence?
    A National Cancer Institute study suggests about 33 percent of stage IA and IB patients experience a reoccurrence. Up to 66 percent of stage IIA, IIB, or IIIA experience a reoccurrence. Interestingly, these percentages are virtually identical for both adenocarcinoma and squamous cell lung cancers. What about stage IIIB or IV disease? The study reports recurrence about half that of lower stages but suggests this is due to competing risk of mortality.
    Including surgery, my treatment success average was a dismal 1 for 5. That translates to a baseball batting average of .200, yielding a quick trip to the minor leagues. I had four recurrences after no evidence of disease (NED) treatments. We didn’t know perseverance was a requirement and we were not prepared.
    How should we prepare? Here is what I didn’t do. Have a frank conversation with my oncologist seeking information on recurrence likelihood. Share this information with my family to ensure they were prepared for bad news. Finally, celebrate my NED state by fully engaging in life. NED is that extra life treatment buys and we did not take maximum advantage of it. 
    A sidebar benefit of surviving is accumulating lessons learned. I now completely understand that lung cancer is a persistent malady that is difficult to eradicate with unpredictable treatment outcomes. Like the best baseball players, we need to take our turn at each new treatment with a fresh perspective, forgetting our last experience and striving only to put the ball in play and arrest our disease. 
    Stay the course.
  91. Like
    Tom Galli got a reaction from LindaD for a blog entry, 10 Steps to Surviving Lung Cancer from a Survivor   
    MY STEPS TO SURVIVING A LUNG CANCER DIAGNOSIS
    Step 1 – Invest in sophisticated diagnosics before diagnosis
    If you smoke, were a long-term smoker, or are in an occupation that exposes you to carcinogenic toxins (asbestos removal, auto mechanic, painter, etc.), I suggest getting a computed tomography (CT) scan, often called a CAT scan, of the chest once a year. Insurance now covers it and CT will detect tumors far earlier than a chest x-ray. Early detection of small tumors dramatically enhances your survival chances. I had a chest x-ray in January 2004 and was diagnosed with stage 3b, non-small cell lung cancer the following month. The tumor hadn’t shown on the x-ray; but at diagnosis, it was almost 3 inches long and ½ inch in diameter. The only symptom I had was coughing up blood the day before diagnosis. Learn more about early CT screening.
    Step 2 – Choose a good general practitioner 
    Your general practitioner may be the manager of your lung cancer treatment. The GP likely will pick your cancer team and may need to do a little arm-twisting to get things moving. Therefore, there can be great benefits to having a GP who is seasoned and well known in the medical community. I prefer doctors of osteopathic medicine to medical doctors. I’ve found that in my experience the former treat people, not patients. I believe a good physician shows kindness, consideration, and compassion toward those in his or her care. These characteristics are essential. Be sure you know your GP and your GP knows you. Such knowledge and trust will give you a survival edge. There are great health care professionals out there.
    Step 3 – Ensure your oncologist is a physician
    A doctor has a degree in medicine and a license to practice. A physician is devoted to restoring, maintaining, and promoting your good health. My physician oncologist does a complete examination (looks in eyes, nose, and throat, checks pulse in the extremities, checks reflexes, listens to breathing and heart rate) every visit. He reviews and explains all test results and asks how I feel. He looks at me as I speak, and he listens and makes notes on what I say. He carefully explains medical treatment alternatives that may arrest the disease, and together we choose each next step. He never rushes consultations and, consequently, often is late to scheduled appointments. Because his tardiness results from spending time with those he treats, I know he cares about me and every other patient. These are some characteristics your physician oncologist should possess.
    Step 4 – Learn about your disease
    At diagnosis, I had no idea what lung cancer was. Moreover, I didn’t know what an oncologist did, nor could I spell the word! After diagnosis, I read everything I could find about the disease; a good resource is the www.LUNGevity.org website. Then I read medical journals, government reports, research papers, and studies. I made notes about things I didn’t understand and asked questions at my oncology consultations. My wife attended every consultation, procedure, and test to ensure every question was asked and answered, and that we understood the answers. You need to know about type, stage, statistics, radiation, diagnostics, chemotherapy, side effects, surgical options, and so much more. Your chances of survival are improved if you are informed enough to ask highly perceptive questions.
    Step 5 – Acquire a sanguine attitude quickly
    Cancer is a disease of death; lung cancer kills more than all other cancers. Your attitude toward treatment is, I believe, essential to survival. When you acquire a sanguine attitude, your treatment team will notice your optimism. They will enjoy interacting with you; they will care about you. I strongly suggest you read Stephen Jay Gould’s essay “The Median Isn’t the Message” to help you understand survival statistics and find optimism about what appear to be bleak probability of survival projections. Join a cancer blog or messageboard. I am a member of several where I can broadcast my complaints and protestations to people who understand and have useful advice for coping. Find cancer support groups and join one. Most people who treat you have no idea how you are feeling. But survivors in cancer support groups understand; they know how you feel—you’ll fit right in!
    Step 6 – Any port in a storm
    There is no such thing as “a little stick!” During procedures and treatment, almost everyone will attempt to gain access to your veins with an intravenous device of some type. All such intrusions are uncomfortable, and unless the practitioner is good and lucky he or she will miss more often than not. If your treatment involves intravenously administered chemotherapy, you likely will get stuck at least once a week. A good way to avoid discomfort and frustration is to ask for a port. Installation involves simple, low-risk surgery. Once in place, you need to keep the area clean and exercise precautions when bathing—but access to your veins is no longer a storm but a port in a storm!
    Step 7 – Don’t believe the miracle cure
    The consequences of a lung cancer diagnosis are frightening. For most, it will be your first serious encounter with the prospect of death. When you type “lung cancer” into Google, you will be bombarded by advertisement that promises miracle cure at considerable expense. There is no such thing as a miracle cure! Before you invest time (now precious) investigating one of these “too good to be true” remedies, check it out on www.quackwatch.org and discuss it with your physician. Oncology is a medical science. Procedures, drugs, and protocols are tested using scientific methods that are published and reviewed by peers and regulating organizations. When science-based breakthroughs are discovered, they are broadcast very quickly throughout the practitioner community.Read about Steve Jobs—one of the smartest technologists and businessmen the world has ever known—who delayed his cancer treatment.
    Step 8 – Don’t try to tough it out
    I am a retired soldier and believed I was man enough to handle almost anything. Cancer proved to be the “anything” I could not handle! I suffered a long time trying to tough it out before I admitted I was depressed. My physician’s response: “Of course you are depressed—how could you not be?” He prescribed appropriate medication, arranged consultations with a psychologist, and suggested I attend support groups. Unless you are tougher than I, you will experience depression. Admit it and accept help. Here are some other things you might try. Ask for the “freeze spray” before an IV is used. If claustrophobic, get a script for Xanax and take it shortly before scans. Even in summer, wear warm clothing to diagnostic and infusion sessions. Some areas where these take place are kept very cold. Many treatment centers have volunteers—engage one in conversation. Many are survivors or caregivers and have a wealth of helpful information. During consultations, I was so frightened I couldn’t rationally ask questions about results or next steps, and I certainly couldn’t remember what was said. Consequently, I never go alone to a consultation. I suggest if you can, always have someone with you too.
    Step 9 – Become a calendar maniac
    If you have a smartphone with a calendar application, become an expert in its use. If not, keep a paper “cancer calendar” to record information. Your life after diagnosis will likely become filled with scheduled appointments, and given the nature of the disease and intensity of the battle, these are appointments you don’t want to miss. For example, my chemotherapy cycle required an infusion every third Friday. I had to record three rounds of steroid medication taken every six hours before each infusion. I had a scheduled blood test every Monday following infusion. Nausea started Sunday morning and lasted until Tuesday. Joint pain started Wednesday and lasted until Saturday. If I took the nausea medication about an hour before onset, symptoms often were minimal. Furthermore, if I started pain medication a couple of hours before onset, my pain was manageable. I used the alarm feature on my phone to warn me in advance. Plus, there was life to live, and the calendar helped me avoid conflicts between my cancer treatment schedule and my life events schedule.
    Step 10 – Choose to live
    When asked about my cancer experience, I often tell those in treatment that cancer is a disease of life or death. I believe if you choose treatment, you are choosing life. And if you choose to live, do something with the life you are given. The “something” will be different for each of us, but doing whatever you enjoy or find fulfilling is so important. If you enjoyed an activity before diagnosis, do it afterward. Look at yourself in the mirror every morning. If you don’t see an expiration date stamped on your forehead, then enjoy the day and look forward to the next! Oh, by the way, your hair will grow back! Baldness is a beautiful badge of courage.
    Stay the course.
  92. Like
    Tom Galli got a reaction from Janetp129 for a blog entry, 10 Steps to Surviving Lung Cancer from a Survivor   
    MY STEPS TO SURVIVING A LUNG CANCER DIAGNOSIS
    Step 1 – Invest in sophisticated diagnosics before diagnosis
    If you smoke, were a long-term smoker, or are in an occupation that exposes you to carcinogenic toxins (asbestos removal, auto mechanic, painter, etc.), I suggest getting a computed tomography (CT) scan, often called a CAT scan, of the chest once a year. Insurance now covers it and CT will detect tumors far earlier than a chest x-ray. Early detection of small tumors dramatically enhances your survival chances. I had a chest x-ray in January 2004 and was diagnosed with stage 3b, non-small cell lung cancer the following month. The tumor hadn’t shown on the x-ray; but at diagnosis, it was almost 3 inches long and ½ inch in diameter. The only symptom I had was coughing up blood the day before diagnosis. Learn more about early CT screening.
    Step 2 – Choose a good general practitioner 
    Your general practitioner may be the manager of your lung cancer treatment. The GP likely will pick your cancer team and may need to do a little arm-twisting to get things moving. Therefore, there can be great benefits to having a GP who is seasoned and well known in the medical community. I prefer doctors of osteopathic medicine to medical doctors. I’ve found that in my experience the former treat people, not patients. I believe a good physician shows kindness, consideration, and compassion toward those in his or her care. These characteristics are essential. Be sure you know your GP and your GP knows you. Such knowledge and trust will give you a survival edge. There are great health care professionals out there.
    Step 3 – Ensure your oncologist is a physician
    A doctor has a degree in medicine and a license to practice. A physician is devoted to restoring, maintaining, and promoting your good health. My physician oncologist does a complete examination (looks in eyes, nose, and throat, checks pulse in the extremities, checks reflexes, listens to breathing and heart rate) every visit. He reviews and explains all test results and asks how I feel. He looks at me as I speak, and he listens and makes notes on what I say. He carefully explains medical treatment alternatives that may arrest the disease, and together we choose each next step. He never rushes consultations and, consequently, often is late to scheduled appointments. Because his tardiness results from spending time with those he treats, I know he cares about me and every other patient. These are some characteristics your physician oncologist should possess.
    Step 4 – Learn about your disease
    At diagnosis, I had no idea what lung cancer was. Moreover, I didn’t know what an oncologist did, nor could I spell the word! After diagnosis, I read everything I could find about the disease; a good resource is the www.LUNGevity.org website. Then I read medical journals, government reports, research papers, and studies. I made notes about things I didn’t understand and asked questions at my oncology consultations. My wife attended every consultation, procedure, and test to ensure every question was asked and answered, and that we understood the answers. You need to know about type, stage, statistics, radiation, diagnostics, chemotherapy, side effects, surgical options, and so much more. Your chances of survival are improved if you are informed enough to ask highly perceptive questions.
    Step 5 – Acquire a sanguine attitude quickly
    Cancer is a disease of death; lung cancer kills more than all other cancers. Your attitude toward treatment is, I believe, essential to survival. When you acquire a sanguine attitude, your treatment team will notice your optimism. They will enjoy interacting with you; they will care about you. I strongly suggest you read Stephen Jay Gould’s essay “The Median Isn’t the Message” to help you understand survival statistics and find optimism about what appear to be bleak probability of survival projections. Join a cancer blog or messageboard. I am a member of several where I can broadcast my complaints and protestations to people who understand and have useful advice for coping. Find cancer support groups and join one. Most people who treat you have no idea how you are feeling. But survivors in cancer support groups understand; they know how you feel—you’ll fit right in!
    Step 6 – Any port in a storm
    There is no such thing as “a little stick!” During procedures and treatment, almost everyone will attempt to gain access to your veins with an intravenous device of some type. All such intrusions are uncomfortable, and unless the practitioner is good and lucky he or she will miss more often than not. If your treatment involves intravenously administered chemotherapy, you likely will get stuck at least once a week. A good way to avoid discomfort and frustration is to ask for a port. Installation involves simple, low-risk surgery. Once in place, you need to keep the area clean and exercise precautions when bathing—but access to your veins is no longer a storm but a port in a storm!
    Step 7 – Don’t believe the miracle cure
    The consequences of a lung cancer diagnosis are frightening. For most, it will be your first serious encounter with the prospect of death. When you type “lung cancer” into Google, you will be bombarded by advertisement that promises miracle cure at considerable expense. There is no such thing as a miracle cure! Before you invest time (now precious) investigating one of these “too good to be true” remedies, check it out on www.quackwatch.org and discuss it with your physician. Oncology is a medical science. Procedures, drugs, and protocols are tested using scientific methods that are published and reviewed by peers and regulating organizations. When science-based breakthroughs are discovered, they are broadcast very quickly throughout the practitioner community.Read about Steve Jobs—one of the smartest technologists and businessmen the world has ever known—who delayed his cancer treatment.
    Step 8 – Don’t try to tough it out
    I am a retired soldier and believed I was man enough to handle almost anything. Cancer proved to be the “anything” I could not handle! I suffered a long time trying to tough it out before I admitted I was depressed. My physician’s response: “Of course you are depressed—how could you not be?” He prescribed appropriate medication, arranged consultations with a psychologist, and suggested I attend support groups. Unless you are tougher than I, you will experience depression. Admit it and accept help. Here are some other things you might try. Ask for the “freeze spray” before an IV is used. If claustrophobic, get a script for Xanax and take it shortly before scans. Even in summer, wear warm clothing to diagnostic and infusion sessions. Some areas where these take place are kept very cold. Many treatment centers have volunteers—engage one in conversation. Many are survivors or caregivers and have a wealth of helpful information. During consultations, I was so frightened I couldn’t rationally ask questions about results or next steps, and I certainly couldn’t remember what was said. Consequently, I never go alone to a consultation. I suggest if you can, always have someone with you too.
    Step 9 – Become a calendar maniac
    If you have a smartphone with a calendar application, become an expert in its use. If not, keep a paper “cancer calendar” to record information. Your life after diagnosis will likely become filled with scheduled appointments, and given the nature of the disease and intensity of the battle, these are appointments you don’t want to miss. For example, my chemotherapy cycle required an infusion every third Friday. I had to record three rounds of steroid medication taken every six hours before each infusion. I had a scheduled blood test every Monday following infusion. Nausea started Sunday morning and lasted until Tuesday. Joint pain started Wednesday and lasted until Saturday. If I took the nausea medication about an hour before onset, symptoms often were minimal. Furthermore, if I started pain medication a couple of hours before onset, my pain was manageable. I used the alarm feature on my phone to warn me in advance. Plus, there was life to live, and the calendar helped me avoid conflicts between my cancer treatment schedule and my life events schedule.
    Step 10 – Choose to live
    When asked about my cancer experience, I often tell those in treatment that cancer is a disease of life or death. I believe if you choose treatment, you are choosing life. And if you choose to live, do something with the life you are given. The “something” will be different for each of us, but doing whatever you enjoy or find fulfilling is so important. If you enjoyed an activity before diagnosis, do it afterward. Look at yourself in the mirror every morning. If you don’t see an expiration date stamped on your forehead, then enjoy the day and look forward to the next! Oh, by the way, your hair will grow back! Baldness is a beautiful badge of courage.
    Stay the course.
  93. Like
    Tom Galli got a reaction from adam for a blog entry, 10 Steps to Surviving Lung Cancer from a Survivor   
    MY STEPS TO SURVIVING A LUNG CANCER DIAGNOSIS
    Step 1 – Invest in sophisticated diagnosics before diagnosis
    If you smoke, were a long-term smoker, or are in an occupation that exposes you to carcinogenic toxins (asbestos removal, auto mechanic, painter, etc.), I suggest getting a computed tomography (CT) scan, often called a CAT scan, of the chest once a year. Insurance now covers it and CT will detect tumors far earlier than a chest x-ray. Early detection of small tumors dramatically enhances your survival chances. I had a chest x-ray in January 2004 and was diagnosed with stage 3b, non-small cell lung cancer the following month. The tumor hadn’t shown on the x-ray; but at diagnosis, it was almost 3 inches long and ½ inch in diameter. The only symptom I had was coughing up blood the day before diagnosis. Learn more about early CT screening.
    Step 2 – Choose a good general practitioner 
    Your general practitioner may be the manager of your lung cancer treatment. The GP likely will pick your cancer team and may need to do a little arm-twisting to get things moving. Therefore, there can be great benefits to having a GP who is seasoned and well known in the medical community. I prefer doctors of osteopathic medicine to medical doctors. I’ve found that in my experience the former treat people, not patients. I believe a good physician shows kindness, consideration, and compassion toward those in his or her care. These characteristics are essential. Be sure you know your GP and your GP knows you. Such knowledge and trust will give you a survival edge. There are great health care professionals out there.
    Step 3 – Ensure your oncologist is a physician
    A doctor has a degree in medicine and a license to practice. A physician is devoted to restoring, maintaining, and promoting your good health. My physician oncologist does a complete examination (looks in eyes, nose, and throat, checks pulse in the extremities, checks reflexes, listens to breathing and heart rate) every visit. He reviews and explains all test results and asks how I feel. He looks at me as I speak, and he listens and makes notes on what I say. He carefully explains medical treatment alternatives that may arrest the disease, and together we choose each next step. He never rushes consultations and, consequently, often is late to scheduled appointments. Because his tardiness results from spending time with those he treats, I know he cares about me and every other patient. These are some characteristics your physician oncologist should possess.
    Step 4 – Learn about your disease
    At diagnosis, I had no idea what lung cancer was. Moreover, I didn’t know what an oncologist did, nor could I spell the word! After diagnosis, I read everything I could find about the disease; a good resource is the www.LUNGevity.org website. Then I read medical journals, government reports, research papers, and studies. I made notes about things I didn’t understand and asked questions at my oncology consultations. My wife attended every consultation, procedure, and test to ensure every question was asked and answered, and that we understood the answers. You need to know about type, stage, statistics, radiation, diagnostics, chemotherapy, side effects, surgical options, and so much more. Your chances of survival are improved if you are informed enough to ask highly perceptive questions.
    Step 5 – Acquire a sanguine attitude quickly
    Cancer is a disease of death; lung cancer kills more than all other cancers. Your attitude toward treatment is, I believe, essential to survival. When you acquire a sanguine attitude, your treatment team will notice your optimism. They will enjoy interacting with you; they will care about you. I strongly suggest you read Stephen Jay Gould’s essay “The Median Isn’t the Message” to help you understand survival statistics and find optimism about what appear to be bleak probability of survival projections. Join a cancer blog or messageboard. I am a member of several where I can broadcast my complaints and protestations to people who understand and have useful advice for coping. Find cancer support groups and join one. Most people who treat you have no idea how you are feeling. But survivors in cancer support groups understand; they know how you feel—you’ll fit right in!
    Step 6 – Any port in a storm
    There is no such thing as “a little stick!” During procedures and treatment, almost everyone will attempt to gain access to your veins with an intravenous device of some type. All such intrusions are uncomfortable, and unless the practitioner is good and lucky he or she will miss more often than not. If your treatment involves intravenously administered chemotherapy, you likely will get stuck at least once a week. A good way to avoid discomfort and frustration is to ask for a port. Installation involves simple, low-risk surgery. Once in place, you need to keep the area clean and exercise precautions when bathing—but access to your veins is no longer a storm but a port in a storm!
    Step 7 – Don’t believe the miracle cure
    The consequences of a lung cancer diagnosis are frightening. For most, it will be your first serious encounter with the prospect of death. When you type “lung cancer” into Google, you will be bombarded by advertisement that promises miracle cure at considerable expense. There is no such thing as a miracle cure! Before you invest time (now precious) investigating one of these “too good to be true” remedies, check it out on www.quackwatch.org and discuss it with your physician. Oncology is a medical science. Procedures, drugs, and protocols are tested using scientific methods that are published and reviewed by peers and regulating organizations. When science-based breakthroughs are discovered, they are broadcast very quickly throughout the practitioner community.Read about Steve Jobs—one of the smartest technologists and businessmen the world has ever known—who delayed his cancer treatment.
    Step 8 – Don’t try to tough it out
    I am a retired soldier and believed I was man enough to handle almost anything. Cancer proved to be the “anything” I could not handle! I suffered a long time trying to tough it out before I admitted I was depressed. My physician’s response: “Of course you are depressed—how could you not be?” He prescribed appropriate medication, arranged consultations with a psychologist, and suggested I attend support groups. Unless you are tougher than I, you will experience depression. Admit it and accept help. Here are some other things you might try. Ask for the “freeze spray” before an IV is used. If claustrophobic, get a script for Xanax and take it shortly before scans. Even in summer, wear warm clothing to diagnostic and infusion sessions. Some areas where these take place are kept very cold. Many treatment centers have volunteers—engage one in conversation. Many are survivors or caregivers and have a wealth of helpful information. During consultations, I was so frightened I couldn’t rationally ask questions about results or next steps, and I certainly couldn’t remember what was said. Consequently, I never go alone to a consultation. I suggest if you can, always have someone with you too.
    Step 9 – Become a calendar maniac
    If you have a smartphone with a calendar application, become an expert in its use. If not, keep a paper “cancer calendar” to record information. Your life after diagnosis will likely become filled with scheduled appointments, and given the nature of the disease and intensity of the battle, these are appointments you don’t want to miss. For example, my chemotherapy cycle required an infusion every third Friday. I had to record three rounds of steroid medication taken every six hours before each infusion. I had a scheduled blood test every Monday following infusion. Nausea started Sunday morning and lasted until Tuesday. Joint pain started Wednesday and lasted until Saturday. If I took the nausea medication about an hour before onset, symptoms often were minimal. Furthermore, if I started pain medication a couple of hours before onset, my pain was manageable. I used the alarm feature on my phone to warn me in advance. Plus, there was life to live, and the calendar helped me avoid conflicts between my cancer treatment schedule and my life events schedule.
    Step 10 – Choose to live
    When asked about my cancer experience, I often tell those in treatment that cancer is a disease of life or death. I believe if you choose treatment, you are choosing life. And if you choose to live, do something with the life you are given. The “something” will be different for each of us, but doing whatever you enjoy or find fulfilling is so important. If you enjoyed an activity before diagnosis, do it afterward. Look at yourself in the mirror every morning. If you don’t see an expiration date stamped on your forehead, then enjoy the day and look forward to the next! Oh, by the way, your hair will grow back! Baldness is a beautiful badge of courage.
    Stay the course.
  94. Like
    Tom Galli got a reaction from Lydia V for a blog entry, 10 Steps to Surviving Lung Cancer from a Survivor   
    MY STEPS TO SURVIVING A LUNG CANCER DIAGNOSIS
    Step 1 – Invest in sophisticated diagnosics before diagnosis
    If you smoke, were a long-term smoker, or are in an occupation that exposes you to carcinogenic toxins (asbestos removal, auto mechanic, painter, etc.), I suggest getting a computed tomography (CT) scan, often called a CAT scan, of the chest once a year. Insurance now covers it and CT will detect tumors far earlier than a chest x-ray. Early detection of small tumors dramatically enhances your survival chances. I had a chest x-ray in January 2004 and was diagnosed with stage 3b, non-small cell lung cancer the following month. The tumor hadn’t shown on the x-ray; but at diagnosis, it was almost 3 inches long and ½ inch in diameter. The only symptom I had was coughing up blood the day before diagnosis. Learn more about early CT screening.
    Step 2 – Choose a good general practitioner 
    Your general practitioner may be the manager of your lung cancer treatment. The GP likely will pick your cancer team and may need to do a little arm-twisting to get things moving. Therefore, there can be great benefits to having a GP who is seasoned and well known in the medical community. I prefer doctors of osteopathic medicine to medical doctors. I’ve found that in my experience the former treat people, not patients. I believe a good physician shows kindness, consideration, and compassion toward those in his or her care. These characteristics are essential. Be sure you know your GP and your GP knows you. Such knowledge and trust will give you a survival edge. There are great health care professionals out there.
    Step 3 – Ensure your oncologist is a physician
    A doctor has a degree in medicine and a license to practice. A physician is devoted to restoring, maintaining, and promoting your good health. My physician oncologist does a complete examination (looks in eyes, nose, and throat, checks pulse in the extremities, checks reflexes, listens to breathing and heart rate) every visit. He reviews and explains all test results and asks how I feel. He looks at me as I speak, and he listens and makes notes on what I say. He carefully explains medical treatment alternatives that may arrest the disease, and together we choose each next step. He never rushes consultations and, consequently, often is late to scheduled appointments. Because his tardiness results from spending time with those he treats, I know he cares about me and every other patient. These are some characteristics your physician oncologist should possess.
    Step 4 – Learn about your disease
    At diagnosis, I had no idea what lung cancer was. Moreover, I didn’t know what an oncologist did, nor could I spell the word! After diagnosis, I read everything I could find about the disease; a good resource is the www.LUNGevity.org website. Then I read medical journals, government reports, research papers, and studies. I made notes about things I didn’t understand and asked questions at my oncology consultations. My wife attended every consultation, procedure, and test to ensure every question was asked and answered, and that we understood the answers. You need to know about type, stage, statistics, radiation, diagnostics, chemotherapy, side effects, surgical options, and so much more. Your chances of survival are improved if you are informed enough to ask highly perceptive questions.
    Step 5 – Acquire a sanguine attitude quickly
    Cancer is a disease of death; lung cancer kills more than all other cancers. Your attitude toward treatment is, I believe, essential to survival. When you acquire a sanguine attitude, your treatment team will notice your optimism. They will enjoy interacting with you; they will care about you. I strongly suggest you read Stephen Jay Gould’s essay “The Median Isn’t the Message” to help you understand survival statistics and find optimism about what appear to be bleak probability of survival projections. Join a cancer blog or messageboard. I am a member of several where I can broadcast my complaints and protestations to people who understand and have useful advice for coping. Find cancer support groups and join one. Most people who treat you have no idea how you are feeling. But survivors in cancer support groups understand; they know how you feel—you’ll fit right in!
    Step 6 – Any port in a storm
    There is no such thing as “a little stick!” During procedures and treatment, almost everyone will attempt to gain access to your veins with an intravenous device of some type. All such intrusions are uncomfortable, and unless the practitioner is good and lucky he or she will miss more often than not. If your treatment involves intravenously administered chemotherapy, you likely will get stuck at least once a week. A good way to avoid discomfort and frustration is to ask for a port. Installation involves simple, low-risk surgery. Once in place, you need to keep the area clean and exercise precautions when bathing—but access to your veins is no longer a storm but a port in a storm!
    Step 7 – Don’t believe the miracle cure
    The consequences of a lung cancer diagnosis are frightening. For most, it will be your first serious encounter with the prospect of death. When you type “lung cancer” into Google, you will be bombarded by advertisement that promises miracle cure at considerable expense. There is no such thing as a miracle cure! Before you invest time (now precious) investigating one of these “too good to be true” remedies, check it out on www.quackwatch.org and discuss it with your physician. Oncology is a medical science. Procedures, drugs, and protocols are tested using scientific methods that are published and reviewed by peers and regulating organizations. When science-based breakthroughs are discovered, they are broadcast very quickly throughout the practitioner community.Read about Steve Jobs—one of the smartest technologists and businessmen the world has ever known—who delayed his cancer treatment.
    Step 8 – Don’t try to tough it out
    I am a retired soldier and believed I was man enough to handle almost anything. Cancer proved to be the “anything” I could not handle! I suffered a long time trying to tough it out before I admitted I was depressed. My physician’s response: “Of course you are depressed—how could you not be?” He prescribed appropriate medication, arranged consultations with a psychologist, and suggested I attend support groups. Unless you are tougher than I, you will experience depression. Admit it and accept help. Here are some other things you might try. Ask for the “freeze spray” before an IV is used. If claustrophobic, get a script for Xanax and take it shortly before scans. Even in summer, wear warm clothing to diagnostic and infusion sessions. Some areas where these take place are kept very cold. Many treatment centers have volunteers—engage one in conversation. Many are survivors or caregivers and have a wealth of helpful information. During consultations, I was so frightened I couldn’t rationally ask questions about results or next steps, and I certainly couldn’t remember what was said. Consequently, I never go alone to a consultation. I suggest if you can, always have someone with you too.
    Step 9 – Become a calendar maniac
    If you have a smartphone with a calendar application, become an expert in its use. If not, keep a paper “cancer calendar” to record information. Your life after diagnosis will likely become filled with scheduled appointments, and given the nature of the disease and intensity of the battle, these are appointments you don’t want to miss. For example, my chemotherapy cycle required an infusion every third Friday. I had to record three rounds of steroid medication taken every six hours before each infusion. I had a scheduled blood test every Monday following infusion. Nausea started Sunday morning and lasted until Tuesday. Joint pain started Wednesday and lasted until Saturday. If I took the nausea medication about an hour before onset, symptoms often were minimal. Furthermore, if I started pain medication a couple of hours before onset, my pain was manageable. I used the alarm feature on my phone to warn me in advance. Plus, there was life to live, and the calendar helped me avoid conflicts between my cancer treatment schedule and my life events schedule.
    Step 10 – Choose to live
    When asked about my cancer experience, I often tell those in treatment that cancer is a disease of life or death. I believe if you choose treatment, you are choosing life. And if you choose to live, do something with the life you are given. The “something” will be different for each of us, but doing whatever you enjoy or find fulfilling is so important. If you enjoyed an activity before diagnosis, do it afterward. Look at yourself in the mirror every morning. If you don’t see an expiration date stamped on your forehead, then enjoy the day and look forward to the next! Oh, by the way, your hair will grow back! Baldness is a beautiful badge of courage.
    Stay the course.
  95. Like
    Tom Galli got a reaction from bdp hopewell for a blog entry, Hope Is A Good Thing   
    Red, in white shirt and loose thin-black tie and sweating in Maine’s summer heat, is leaning on a rock-wall fence.  He’s just opened Andy’s letter found under the black obsidian rock.  In the background we hear Andy reading his evocative description of hope: “Remember Red, hope is a good thing, maybe the best of things and no good thing ever dies.” The movie Shawshank Redemption is a powerful story about hope and life with a message that should resonate with every lung cancer survivor.
    I watched the movie the other day and made the connection.  Andy was imprisoned for two life sentences with no possibility of parole.  He was wrongly convicted of murder and throughout the story of his day-to-day life in prison, everyone tells him “hope is a dangerous thing.”  On escaping, Andy proclaims that hope is “maybe the best of things.”  The movie story line is exactly parallel to the plight of the late-stage diagnosed lung cancer patient ⎯- an unforgiving disease with hope as the most effective means of avoiding consequences.
    For lung cancer, hope is not a medical remedy.  While new lung cancer treatments are emerging more frequently now, basic research funding to diagnose and treat lung cancer lags other cancers.  Perhaps the pace may pick up, one hopes.  Perhaps a treatment may emerge just in time to save a life, one hopes.  Perhaps a miracle remission occurs, one hopes.  Hope may not be a medical remedy but, for many of us, it is our only effective medicament.  And, in my case, hope is “maybe the best of things.” 
    Recall the story line of Shawshank.  Andy’s future is confinement in a mind numbing institution, but he makes a choice to live in a different reality and works diligently, every day, on a novel escape plan. He makes a conscious decision to live.  He embraces the hope of escape against all odds.  Andy’s poignant characterization about life reveals his reasoning: “I guess it comes down to a simple choice, really.  Get busy living or get busy dying.”  Exactly!
    Sometimes in the heat of lung cancer treatment, we forget its purpose ⎯- extended life.  No one knows how long but life for most is extended. So what do we do with the extension?  Re-read Andy’s characterization.
    We long for a period of life extending into satisfying old age.  But most without lung cancer do not dwell on the amount remaining on account.  Lung cancer patients take careful measure of the balance.  But, measure for what end?  I believe, if one chooses treatment, then one chooses life.  Rather than dwell on the remaining balance, focus on doing something you enjoy everyday.  I suggest a survivor forget the past, declare the future irrelevant, and live in the day.
    “Get busy living or get busy dying.”
    Stay the course.
  96. Like
    Tom Galli got a reaction from Monica7 for a blog entry, 10 Steps to Surviving Lung Cancer from a Survivor   
    MY STEPS TO SURVIVING A LUNG CANCER DIAGNOSIS
    Step 1 – Invest in sophisticated diagnosics before diagnosis
    If you smoke, were a long-term smoker, or are in an occupation that exposes you to carcinogenic toxins (asbestos removal, auto mechanic, painter, etc.), I suggest getting a computed tomography (CT) scan, often called a CAT scan, of the chest once a year. Insurance now covers it and CT will detect tumors far earlier than a chest x-ray. Early detection of small tumors dramatically enhances your survival chances. I had a chest x-ray in January 2004 and was diagnosed with stage 3b, non-small cell lung cancer the following month. The tumor hadn’t shown on the x-ray; but at diagnosis, it was almost 3 inches long and ½ inch in diameter. The only symptom I had was coughing up blood the day before diagnosis. Learn more about early CT screening.
    Step 2 – Choose a good general practitioner 
    Your general practitioner may be the manager of your lung cancer treatment. The GP likely will pick your cancer team and may need to do a little arm-twisting to get things moving. Therefore, there can be great benefits to having a GP who is seasoned and well known in the medical community. I prefer doctors of osteopathic medicine to medical doctors. I’ve found that in my experience the former treat people, not patients. I believe a good physician shows kindness, consideration, and compassion toward those in his or her care. These characteristics are essential. Be sure you know your GP and your GP knows you. Such knowledge and trust will give you a survival edge. There are great health care professionals out there.
    Step 3 – Ensure your oncologist is a physician
    A doctor has a degree in medicine and a license to practice. A physician is devoted to restoring, maintaining, and promoting your good health. My physician oncologist does a complete examination (looks in eyes, nose, and throat, checks pulse in the extremities, checks reflexes, listens to breathing and heart rate) every visit. He reviews and explains all test results and asks how I feel. He looks at me as I speak, and he listens and makes notes on what I say. He carefully explains medical treatment alternatives that may arrest the disease, and together we choose each next step. He never rushes consultations and, consequently, often is late to scheduled appointments. Because his tardiness results from spending time with those he treats, I know he cares about me and every other patient. These are some characteristics your physician oncologist should possess.
    Step 4 – Learn about your disease
    At diagnosis, I had no idea what lung cancer was. Moreover, I didn’t know what an oncologist did, nor could I spell the word! After diagnosis, I read everything I could find about the disease; a good resource is the www.LUNGevity.org website. Then I read medical journals, government reports, research papers, and studies. I made notes about things I didn’t understand and asked questions at my oncology consultations. My wife attended every consultation, procedure, and test to ensure every question was asked and answered, and that we understood the answers. You need to know about type, stage, statistics, radiation, diagnostics, chemotherapy, side effects, surgical options, and so much more. Your chances of survival are improved if you are informed enough to ask highly perceptive questions.
    Step 5 – Acquire a sanguine attitude quickly
    Cancer is a disease of death; lung cancer kills more than all other cancers. Your attitude toward treatment is, I believe, essential to survival. When you acquire a sanguine attitude, your treatment team will notice your optimism. They will enjoy interacting with you; they will care about you. I strongly suggest you read Stephen Jay Gould’s essay “The Median Isn’t the Message” to help you understand survival statistics and find optimism about what appear to be bleak probability of survival projections. Join a cancer blog or messageboard. I am a member of several where I can broadcast my complaints and protestations to people who understand and have useful advice for coping. Find cancer support groups and join one. Most people who treat you have no idea how you are feeling. But survivors in cancer support groups understand; they know how you feel—you’ll fit right in!
    Step 6 – Any port in a storm
    There is no such thing as “a little stick!” During procedures and treatment, almost everyone will attempt to gain access to your veins with an intravenous device of some type. All such intrusions are uncomfortable, and unless the practitioner is good and lucky he or she will miss more often than not. If your treatment involves intravenously administered chemotherapy, you likely will get stuck at least once a week. A good way to avoid discomfort and frustration is to ask for a port. Installation involves simple, low-risk surgery. Once in place, you need to keep the area clean and exercise precautions when bathing—but access to your veins is no longer a storm but a port in a storm!
    Step 7 – Don’t believe the miracle cure
    The consequences of a lung cancer diagnosis are frightening. For most, it will be your first serious encounter with the prospect of death. When you type “lung cancer” into Google, you will be bombarded by advertisement that promises miracle cure at considerable expense. There is no such thing as a miracle cure! Before you invest time (now precious) investigating one of these “too good to be true” remedies, check it out on www.quackwatch.org and discuss it with your physician. Oncology is a medical science. Procedures, drugs, and protocols are tested using scientific methods that are published and reviewed by peers and regulating organizations. When science-based breakthroughs are discovered, they are broadcast very quickly throughout the practitioner community.Read about Steve Jobs—one of the smartest technologists and businessmen the world has ever known—who delayed his cancer treatment.
    Step 8 – Don’t try to tough it out
    I am a retired soldier and believed I was man enough to handle almost anything. Cancer proved to be the “anything” I could not handle! I suffered a long time trying to tough it out before I admitted I was depressed. My physician’s response: “Of course you are depressed—how could you not be?” He prescribed appropriate medication, arranged consultations with a psychologist, and suggested I attend support groups. Unless you are tougher than I, you will experience depression. Admit it and accept help. Here are some other things you might try. Ask for the “freeze spray” before an IV is used. If claustrophobic, get a script for Xanax and take it shortly before scans. Even in summer, wear warm clothing to diagnostic and infusion sessions. Some areas where these take place are kept very cold. Many treatment centers have volunteers—engage one in conversation. Many are survivors or caregivers and have a wealth of helpful information. During consultations, I was so frightened I couldn’t rationally ask questions about results or next steps, and I certainly couldn’t remember what was said. Consequently, I never go alone to a consultation. I suggest if you can, always have someone with you too.
    Step 9 – Become a calendar maniac
    If you have a smartphone with a calendar application, become an expert in its use. If not, keep a paper “cancer calendar” to record information. Your life after diagnosis will likely become filled with scheduled appointments, and given the nature of the disease and intensity of the battle, these are appointments you don’t want to miss. For example, my chemotherapy cycle required an infusion every third Friday. I had to record three rounds of steroid medication taken every six hours before each infusion. I had a scheduled blood test every Monday following infusion. Nausea started Sunday morning and lasted until Tuesday. Joint pain started Wednesday and lasted until Saturday. If I took the nausea medication about an hour before onset, symptoms often were minimal. Furthermore, if I started pain medication a couple of hours before onset, my pain was manageable. I used the alarm feature on my phone to warn me in advance. Plus, there was life to live, and the calendar helped me avoid conflicts between my cancer treatment schedule and my life events schedule.
    Step 10 – Choose to live
    When asked about my cancer experience, I often tell those in treatment that cancer is a disease of life or death. I believe if you choose treatment, you are choosing life. And if you choose to live, do something with the life you are given. The “something” will be different for each of us, but doing whatever you enjoy or find fulfilling is so important. If you enjoyed an activity before diagnosis, do it afterward. Look at yourself in the mirror every morning. If you don’t see an expiration date stamped on your forehead, then enjoy the day and look forward to the next! Oh, by the way, your hair will grow back! Baldness is a beautiful badge of courage.
    Stay the course.
  97. Like
    Tom Galli got a reaction from THull for a blog entry, Uncertain Treatment Outcomes: A Baseball Model   
    Baseball is a game that requires patient players and fans. Like lung cancer treatment, there is a lot of waiting for something to happen. Also like lung cancer, the game is unpredictable. A single pitch can change the outcome of a game like a single cell can change the outcome of treatment. And like lung cancer, baseball has many uncertainties and these are defined by odds. The best hitters succeed a little better than one in three times; the best teams winning about six in ten games. Baseball players need to persevere against low odds of success to achieve victory. So do lung cancer patients.
    A lung cancer diagnosis is devastating. Recurrence after treatment is common and traumatizing. We ought to prepare for the distress of recurrence. Treatment, even for those diagnosed at early stage, is not likely to be a walk-off home run. I was not prepared for treatment failure. How common is recurrence?
    A National Cancer Institute study suggests about 33 percent of stage IA and IB patients experience a reoccurrence. Up to 66 percent of stage IIA, IIB, or IIIA experience a reoccurrence. Interestingly, these percentages are virtually identical for both adenocarcinoma and squamous cell lung cancers. What about stage IIIB or IV disease? The study reports recurrence about half that of lower stages but suggests this is due to competing risk of mortality.
    Including surgery, my treatment success average was a dismal 1 for 5. That translates to a baseball batting average of .200, yielding a quick trip to the minor leagues. I had four recurrences after no evidence of disease (NED) treatments. We didn’t know perseverance was a requirement and we were not prepared.
    How should we prepare? Here is what I didn’t do. Have a frank conversation with my oncologist seeking information on recurrence likelihood. Share this information with my family to ensure they were prepared for bad news. Finally, celebrate my NED state by fully engaging in life. NED is that extra life treatment buys and we did not take maximum advantage of it. 
    A sidebar benefit of surviving is accumulating lessons learned. I now completely understand that lung cancer is a persistent malady that is difficult to eradicate with unpredictable treatment outcomes. Like the best baseball players, we need to take our turn at each new treatment with a fresh perspective, forgetting our last experience and striving only to put the ball in play and arrest our disease. 
    Stay the course.
  98. Like
    Tom Galli got a reaction from Meloni for a blog entry, Uncertain Treatment Outcomes: A Baseball Model   
    Baseball is a game that requires patient players and fans. Like lung cancer treatment, there is a lot of waiting for something to happen. Also like lung cancer, the game is unpredictable. A single pitch can change the outcome of a game like a single cell can change the outcome of treatment. And like lung cancer, baseball has many uncertainties and these are defined by odds. The best hitters succeed a little better than one in three times; the best teams winning about six in ten games. Baseball players need to persevere against low odds of success to achieve victory. So do lung cancer patients.
    A lung cancer diagnosis is devastating. Recurrence after treatment is common and traumatizing. We ought to prepare for the distress of recurrence. Treatment, even for those diagnosed at early stage, is not likely to be a walk-off home run. I was not prepared for treatment failure. How common is recurrence?
    A National Cancer Institute study suggests about 33 percent of stage IA and IB patients experience a reoccurrence. Up to 66 percent of stage IIA, IIB, or IIIA experience a reoccurrence. Interestingly, these percentages are virtually identical for both adenocarcinoma and squamous cell lung cancers. What about stage IIIB or IV disease? The study reports recurrence about half that of lower stages but suggests this is due to competing risk of mortality.
    Including surgery, my treatment success average was a dismal 1 for 5. That translates to a baseball batting average of .200, yielding a quick trip to the minor leagues. I had four recurrences after no evidence of disease (NED) treatments. We didn’t know perseverance was a requirement and we were not prepared.
    How should we prepare? Here is what I didn’t do. Have a frank conversation with my oncologist seeking information on recurrence likelihood. Share this information with my family to ensure they were prepared for bad news. Finally, celebrate my NED state by fully engaging in life. NED is that extra life treatment buys and we did not take maximum advantage of it. 
    A sidebar benefit of surviving is accumulating lessons learned. I now completely understand that lung cancer is a persistent malady that is difficult to eradicate with unpredictable treatment outcomes. Like the best baseball players, we need to take our turn at each new treatment with a fresh perspective, forgetting our last experience and striving only to put the ball in play and arrest our disease. 
    Stay the course.
  99. Like
    Tom Galli got a reaction from RuthieThomas for a blog entry, Uncertain Treatment Outcomes: A Baseball Model   
    Baseball is a game that requires patient players and fans. Like lung cancer treatment, there is a lot of waiting for something to happen. Also like lung cancer, the game is unpredictable. A single pitch can change the outcome of a game like a single cell can change the outcome of treatment. And like lung cancer, baseball has many uncertainties and these are defined by odds. The best hitters succeed a little better than one in three times; the best teams winning about six in ten games. Baseball players need to persevere against low odds of success to achieve victory. So do lung cancer patients.
    A lung cancer diagnosis is devastating. Recurrence after treatment is common and traumatizing. We ought to prepare for the distress of recurrence. Treatment, even for those diagnosed at early stage, is not likely to be a walk-off home run. I was not prepared for treatment failure. How common is recurrence?
    A National Cancer Institute study suggests about 33 percent of stage IA and IB patients experience a reoccurrence. Up to 66 percent of stage IIA, IIB, or IIIA experience a reoccurrence. Interestingly, these percentages are virtually identical for both adenocarcinoma and squamous cell lung cancers. What about stage IIIB or IV disease? The study reports recurrence about half that of lower stages but suggests this is due to competing risk of mortality.
    Including surgery, my treatment success average was a dismal 1 for 5. That translates to a baseball batting average of .200, yielding a quick trip to the minor leagues. I had four recurrences after no evidence of disease (NED) treatments. We didn’t know perseverance was a requirement and we were not prepared.
    How should we prepare? Here is what I didn’t do. Have a frank conversation with my oncologist seeking information on recurrence likelihood. Share this information with my family to ensure they were prepared for bad news. Finally, celebrate my NED state by fully engaging in life. NED is that extra life treatment buys and we did not take maximum advantage of it. 
    A sidebar benefit of surviving is accumulating lessons learned. I now completely understand that lung cancer is a persistent malady that is difficult to eradicate with unpredictable treatment outcomes. Like the best baseball players, we need to take our turn at each new treatment with a fresh perspective, forgetting our last experience and striving only to put the ball in play and arrest our disease. 
    Stay the course.
  100. Like
    Tom Galli got a reaction from Enilorac for a blog entry, Hope Is A Good Thing   
    Red, in white shirt and loose thin-black tie and sweating in Maine’s summer heat, is leaning on a rock-wall fence.  He’s just opened Andy’s letter found under the black obsidian rock.  In the background we hear Andy reading his evocative description of hope: “Remember Red, hope is a good thing, maybe the best of things and no good thing ever dies.” The movie Shawshank Redemption is a powerful story about hope and life with a message that should resonate with every lung cancer survivor.
    I watched the movie the other day and made the connection.  Andy was imprisoned for two life sentences with no possibility of parole.  He was wrongly convicted of murder and throughout the story of his day-to-day life in prison, everyone tells him “hope is a dangerous thing.”  On escaping, Andy proclaims that hope is “maybe the best of things.”  The movie story line is exactly parallel to the plight of the late-stage diagnosed lung cancer patient ⎯- an unforgiving disease with hope as the most effective means of avoiding consequences.
    For lung cancer, hope is not a medical remedy.  While new lung cancer treatments are emerging more frequently now, basic research funding to diagnose and treat lung cancer lags other cancers.  Perhaps the pace may pick up, one hopes.  Perhaps a treatment may emerge just in time to save a life, one hopes.  Perhaps a miracle remission occurs, one hopes.  Hope may not be a medical remedy but, for many of us, it is our only effective medicament.  And, in my case, hope is “maybe the best of things.” 
    Recall the story line of Shawshank.  Andy’s future is confinement in a mind numbing institution, but he makes a choice to live in a different reality and works diligently, every day, on a novel escape plan. He makes a conscious decision to live.  He embraces the hope of escape against all odds.  Andy’s poignant characterization about life reveals his reasoning: “I guess it comes down to a simple choice, really.  Get busy living or get busy dying.”  Exactly!
    Sometimes in the heat of lung cancer treatment, we forget its purpose ⎯- extended life.  No one knows how long but life for most is extended. So what do we do with the extension?  Re-read Andy’s characterization.
    We long for a period of life extending into satisfying old age.  But most without lung cancer do not dwell on the amount remaining on account.  Lung cancer patients take careful measure of the balance.  But, measure for what end?  I believe, if one chooses treatment, then one chooses life.  Rather than dwell on the remaining balance, focus on doing something you enjoy everyday.  I suggest a survivor forget the past, declare the future irrelevant, and live in the day.
    “Get busy living or get busy dying.”
    Stay the course.
  101. Like
    Tom Galli got a reaction from RuthieThomas for a blog entry, Hope Is A Good Thing   
    Red, in white shirt and loose thin-black tie and sweating in Maine’s summer heat, is leaning on a rock-wall fence.  He’s just opened Andy’s letter found under the black obsidian rock.  In the background we hear Andy reading his evocative description of hope: “Remember Red, hope is a good thing, maybe the best of things and no good thing ever dies.” The movie Shawshank Redemption is a powerful story about hope and life with a message that should resonate with every lung cancer survivor.
    I watched the movie the other day and made the connection.  Andy was imprisoned for two life sentences with no possibility of parole.  He was wrongly convicted of murder and throughout the story of his day-to-day life in prison, everyone tells him “hope is a dangerous thing.”  On escaping, Andy proclaims that hope is “maybe the best of things.”  The movie story line is exactly parallel to the plight of the late-stage diagnosed lung cancer patient ⎯- an unforgiving disease with hope as the most effective means of avoiding consequences.
    For lung cancer, hope is not a medical remedy.  While new lung cancer treatments are emerging more frequently now, basic research funding to diagnose and treat lung cancer lags other cancers.  Perhaps the pace may pick up, one hopes.  Perhaps a treatment may emerge just in time to save a life, one hopes.  Perhaps a miracle remission occurs, one hopes.  Hope may not be a medical remedy but, for many of us, it is our only effective medicament.  And, in my case, hope is “maybe the best of things.” 
    Recall the story line of Shawshank.  Andy’s future is confinement in a mind numbing institution, but he makes a choice to live in a different reality and works diligently, every day, on a novel escape plan. He makes a conscious decision to live.  He embraces the hope of escape against all odds.  Andy’s poignant characterization about life reveals his reasoning: “I guess it comes down to a simple choice, really.  Get busy living or get busy dying.”  Exactly!
    Sometimes in the heat of lung cancer treatment, we forget its purpose ⎯- extended life.  No one knows how long but life for most is extended. So what do we do with the extension?  Re-read Andy’s characterization.
    We long for a period of life extending into satisfying old age.  But most without lung cancer do not dwell on the amount remaining on account.  Lung cancer patients take careful measure of the balance.  But, measure for what end?  I believe, if one chooses treatment, then one chooses life.  Rather than dwell on the remaining balance, focus on doing something you enjoy everyday.  I suggest a survivor forget the past, declare the future irrelevant, and live in the day.
    “Get busy living or get busy dying.”
    Stay the course.
  102. Like
    Tom Galli got a reaction from josie1961 for a blog entry, 10 Steps to Surviving Lung Cancer from a Survivor   
    MY STEPS TO SURVIVING A LUNG CANCER DIAGNOSIS
    Step 1 – Invest in sophisticated diagnosics before diagnosis
    If you smoke, were a long-term smoker, or are in an occupation that exposes you to carcinogenic toxins (asbestos removal, auto mechanic, painter, etc.), I suggest getting a computed tomography (CT) scan, often called a CAT scan, of the chest once a year. Insurance now covers it and CT will detect tumors far earlier than a chest x-ray. Early detection of small tumors dramatically enhances your survival chances. I had a chest x-ray in January 2004 and was diagnosed with stage 3b, non-small cell lung cancer the following month. The tumor hadn’t shown on the x-ray; but at diagnosis, it was almost 3 inches long and ½ inch in diameter. The only symptom I had was coughing up blood the day before diagnosis. Learn more about early CT screening.
    Step 2 – Choose a good general practitioner 
    Your general practitioner may be the manager of your lung cancer treatment. The GP likely will pick your cancer team and may need to do a little arm-twisting to get things moving. Therefore, there can be great benefits to having a GP who is seasoned and well known in the medical community. I prefer doctors of osteopathic medicine to medical doctors. I’ve found that in my experience the former treat people, not patients. I believe a good physician shows kindness, consideration, and compassion toward those in his or her care. These characteristics are essential. Be sure you know your GP and your GP knows you. Such knowledge and trust will give you a survival edge. There are great health care professionals out there.
    Step 3 – Ensure your oncologist is a physician
    A doctor has a degree in medicine and a license to practice. A physician is devoted to restoring, maintaining, and promoting your good health. My physician oncologist does a complete examination (looks in eyes, nose, and throat, checks pulse in the extremities, checks reflexes, listens to breathing and heart rate) every visit. He reviews and explains all test results and asks how I feel. He looks at me as I speak, and he listens and makes notes on what I say. He carefully explains medical treatment alternatives that may arrest the disease, and together we choose each next step. He never rushes consultations and, consequently, often is late to scheduled appointments. Because his tardiness results from spending time with those he treats, I know he cares about me and every other patient. These are some characteristics your physician oncologist should possess.
    Step 4 – Learn about your disease
    At diagnosis, I had no idea what lung cancer was. Moreover, I didn’t know what an oncologist did, nor could I spell the word! After diagnosis, I read everything I could find about the disease; a good resource is the www.LUNGevity.org website. Then I read medical journals, government reports, research papers, and studies. I made notes about things I didn’t understand and asked questions at my oncology consultations. My wife attended every consultation, procedure, and test to ensure every question was asked and answered, and that we understood the answers. You need to know about type, stage, statistics, radiation, diagnostics, chemotherapy, side effects, surgical options, and so much more. Your chances of survival are improved if you are informed enough to ask highly perceptive questions.
    Step 5 – Acquire a sanguine attitude quickly
    Cancer is a disease of death; lung cancer kills more than all other cancers. Your attitude toward treatment is, I believe, essential to survival. When you acquire a sanguine attitude, your treatment team will notice your optimism. They will enjoy interacting with you; they will care about you. I strongly suggest you read Stephen Jay Gould’s essay “The Median Isn’t the Message” to help you understand survival statistics and find optimism about what appear to be bleak probability of survival projections. Join a cancer blog or messageboard. I am a member of several where I can broadcast my complaints and protestations to people who understand and have useful advice for coping. Find cancer support groups and join one. Most people who treat you have no idea how you are feeling. But survivors in cancer support groups understand; they know how you feel—you’ll fit right in!
    Step 6 – Any port in a storm
    There is no such thing as “a little stick!” During procedures and treatment, almost everyone will attempt to gain access to your veins with an intravenous device of some type. All such intrusions are uncomfortable, and unless the practitioner is good and lucky he or she will miss more often than not. If your treatment involves intravenously administered chemotherapy, you likely will get stuck at least once a week. A good way to avoid discomfort and frustration is to ask for a port. Installation involves simple, low-risk surgery. Once in place, you need to keep the area clean and exercise precautions when bathing—but access to your veins is no longer a storm but a port in a storm!
    Step 7 – Don’t believe the miracle cure
    The consequences of a lung cancer diagnosis are frightening. For most, it will be your first serious encounter with the prospect of death. When you type “lung cancer” into Google, you will be bombarded by advertisement that promises miracle cure at considerable expense. There is no such thing as a miracle cure! Before you invest time (now precious) investigating one of these “too good to be true” remedies, check it out on www.quackwatch.org and discuss it with your physician. Oncology is a medical science. Procedures, drugs, and protocols are tested using scientific methods that are published and reviewed by peers and regulating organizations. When science-based breakthroughs are discovered, they are broadcast very quickly throughout the practitioner community.Read about Steve Jobs—one of the smartest technologists and businessmen the world has ever known—who delayed his cancer treatment.
    Step 8 – Don’t try to tough it out
    I am a retired soldier and believed I was man enough to handle almost anything. Cancer proved to be the “anything” I could not handle! I suffered a long time trying to tough it out before I admitted I was depressed. My physician’s response: “Of course you are depressed—how could you not be?” He prescribed appropriate medication, arranged consultations with a psychologist, and suggested I attend support groups. Unless you are tougher than I, you will experience depression. Admit it and accept help. Here are some other things you might try. Ask for the “freeze spray” before an IV is used. If claustrophobic, get a script for Xanax and take it shortly before scans. Even in summer, wear warm clothing to diagnostic and infusion sessions. Some areas where these take place are kept very cold. Many treatment centers have volunteers—engage one in conversation. Many are survivors or caregivers and have a wealth of helpful information. During consultations, I was so frightened I couldn’t rationally ask questions about results or next steps, and I certainly couldn’t remember what was said. Consequently, I never go alone to a consultation. I suggest if you can, always have someone with you too.
    Step 9 – Become a calendar maniac
    If you have a smartphone with a calendar application, become an expert in its use. If not, keep a paper “cancer calendar” to record information. Your life after diagnosis will likely become filled with scheduled appointments, and given the nature of the disease and intensity of the battle, these are appointments you don’t want to miss. For example, my chemotherapy cycle required an infusion every third Friday. I had to record three rounds of steroid medication taken every six hours before each infusion. I had a scheduled blood test every Monday following infusion. Nausea started Sunday morning and lasted until Tuesday. Joint pain started Wednesday and lasted until Saturday. If I took the nausea medication about an hour before onset, symptoms often were minimal. Furthermore, if I started pain medication a couple of hours before onset, my pain was manageable. I used the alarm feature on my phone to warn me in advance. Plus, there was life to live, and the calendar helped me avoid conflicts between my cancer treatment schedule and my life events schedule.
    Step 10 – Choose to live
    When asked about my cancer experience, I often tell those in treatment that cancer is a disease of life or death. I believe if you choose treatment, you are choosing life. And if you choose to live, do something with the life you are given. The “something” will be different for each of us, but doing whatever you enjoy or find fulfilling is so important. If you enjoyed an activity before diagnosis, do it afterward. Look at yourself in the mirror every morning. If you don’t see an expiration date stamped on your forehead, then enjoy the day and look forward to the next! Oh, by the way, your hair will grow back! Baldness is a beautiful badge of courage.
    Stay the course.
×
×
  • Create New...

Important Information

By using this site, you agree to our Terms of Use.