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Tom Galli

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  1. Tom Galli

    10 Steps to Surviving Lung Cancer from a Survivor

    By Tom Galli,


    Stay The Course Blog
    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.
  2. Tom Galli

    Comprehending the PET

    By Tom Galli,

    Almost every lung cancer survivor has a positron emission tomography (PET) scan these days. Now, a PET is often given with a computerized axial tomography (CT) scan.  The diagnostician is a radiologist; a discipline that does not write in lingua franca. What do the report words mean? Here is a summary of my August PET-CT to interpret radiology speak.
    INDICATION: (Why am I getting this scan) “The patient…with non-small cell lung cancer of the right main bronchus diagnosed in 2003 status post pneumonectomy….He has undergone previous surgery for bronchopleural fistula repair…Chemotherapy last administered May 2006…Cyberknife therapy for recurrent disease in March 2007…He more recently has cough and chest discomfort.” That’s me, no doubt, but this summary is important.  Radiologists see many scans and sometimes results are misreported.
    TECHNIQUE: (Test scope and method)  Note details about the accuracy of the CT.  “These images do not constitute a diagnostic-quality CT….” The CT results help to precisely map or locate the PET results but cannot generate a diagnostic grade image.
    COMPARISON: (Other scans reviewed while looking at this one). “Report only (no image reviewed) from PET-CT 3/8/2013.  CT of chest and abdomen 8/22/17 (looked at image).”  A CT scan is normally performed first.  PETs follow and accuracy is enhanced if the radiologist has access to prior images. To improve access, have all your scans done at the same medical facility.
    FINDINGS: (The result) “…showed no convincing PET evidence of FDG-avid (fluorodeoxyglucose — radioactive tagged glucose seeking) recurrent or metastatic disease.” This is what we want to see in the first sentence.  Then, the radiologist peels back the onion with detail.  
    “There is mild heterogeneous hypermetabolism (diverse increased rate of metabolic activity)…with a few small superimposed foci (above the hypermetabolic area that is of particular interest)…more intense activity showing a maximum SUV of 3.5 (SUV — standardized uptake value)….When compared to [past reports] uptake…showed SUVs ranging from 2.6 to 2.9. This is strongly favored to be inflammatory.” Relief —this is my chronic pain site caused by 3 thoracic surgeries in the same location!  
    “A somewhat retractile appearing mass (drawn back into lung tissue)…in the left upper lobe is stable in size…This shows minimal uptake…and is most compatible with the site of treated tumor.” My CyeberKnife-fried tumor scar.  I do love precision radiation!
    What are concern ranges for SUV uptake? First, consider what is measured — cellular metabolic rate; more simply is demand for glucose, the fuel of metabolism.  Cells with high metabolism ingest more tagged glucose. The PET shows differences in consumption (uptake).  SUVs below 2.0 are normal.  SUVs above 2.0 are suspect but between 2.0 and 4.0, uptake could be from injury or inflammation.  Readings above 4.0 tend to be cancer but there can be other explanations. Higher than 4.0 is likely cancer, especially when paired with a CT find. Cancer demands glucose to fuel mitosis or growth by cellular division.  
    Get and keep copies of all your diagnostic imaging.  Keep track of the findings.  I use a spreadsheet to record date, location and indications.  Dr. Google is a great source for medical definitions. The best possible outcome for any scan is NED (no evidence of disease).  May NED be with you.
    Stay the course. 
  3. Tom Galli

    LexieCat, Esquire Rests Her Case

    By Tom Galli,


    Stay The Course Blog
    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.

  4. Tom Galli
    This is my fourteenth anniversary surviving a lung cancer diagnosis.  Granddaughter Charlett's decorated toes join mine to keep our right feet forward! I paint my toes every year as a celebration of the joy life brings. In early treatment, there was no joy.  There was fear, frustration, pain, uncertainty and scanziety. I'd not yet discovered Dr. Phillip Bearman who taught me the reason for lung cancer treatment -- achieving extended life.  Phil decided he would live every moment to the fullest despite the rigors of treatment, and he'd celebrate every year of survival with a painted red toenail.  He couldn't control his lung cancer, but he could control the way he felt about his lung cancer.  I started living when I internalized his message.  My first paint job was at my third anniversary and I'll never miss another.
    I am a lung cancer survivor. My message for those in treatment is twofold: enjoy the life extension treatment provides and if I can live, so can you.
    Stay the course.

  5. Tom Galli

    My Friend Randy

    By Tom Galli,

    It was mid-morning on a beautiful February Sunday in Texas when my phone rang.  Randy’s name flashed on my phone screen and on realizing who it was, my mind raced to recall the last time we spoke. Pam his wife greeted me, a mild surprise.
    Randy and I grew up in the same Pennsylvanian township and attended high school together.  Our lives parted with college and after an Army career took me everywhere but home. Randy settled in our hometown.  We had many things in common including surviving lethal cancer.
    Five years ago, Randy and I had a fortuitous meeting online in a cancer blog site.  Randy was diagnosed with Chronic Lymphocytic Leukemia (CLL).  We soon reconnected and were gabbling away during marathon telephone calls.  When we spoke, our wives went shopping!
    Our last conversation was shortly before the Super Bowl. Randy’s disease reoccurred and he was back in chemotherapy.  He’d seen blood work indicators during the fall, yet he remained hopeful that treatment would again arrest his cancer. Randy’s form of CLL was characterized by adverse prognostic factors. CLL is rarely cured; never cured applied to Randy.
    While recurrence and mortality were frequent topics, hope and joy always dominated our conversations.  We helped each other find meaning in our fragile lives.  We coached away depression.  We talked about everything: music, obtuse rock-in-roll lyrics, being young, high school girls, cars, motorcycles, politics, military tactics, bourbon, ballistics, physics, even the strength characteristics of bolts. We formed a bond of friendship experienced by few. 
    Pam’s voice was a tell and then instantly I knew Randy was no longer a survivor. Our friendship ended on February 17th.  Pam is without her beloved husband, and I am missing my dear friend.  Randy was a man of great wisdom tempered by uncommon common sense.  His virtues of kindness, selflessness, and courage stood like great pillars in our least-common-denominator world. Today, that world is smaller, colder, and far less interesting.
    For Pam.
    Stay the course.
     
  6. Tom Galli

    A Life Well Lived

    By Tom Galli,

    A lady with lung cancer passed early this morning. I knew her well. She survived two surgeries claiming a lung, radiation, and many many infusions of chemotherapy. Indeed, her disease was being treated like diabetes or heart disease — a chronic but controlled condition.
    Lung cancer did not claim her and death is not a celebratory event, but living a full and meaningful life despite lung cancer is indeed praiseworthy. In characterizing the lady’s life, full and meaningful are an enormous understatement.
    In recalling our years together, I am struck by how few times we talked about lung cancer.  We shared a disease but talked about stock shows, cars, fashion, movies, politics, family, travel, ranching, tomatoes, and friends. That she would not achieve NED didn’t bother her a bit. “I’ve got things to do and doing nothing ain’t gonna happen!” 
    I will morn her passing.  I will also strive to emulate her lifestyle.
    Stay the course.
  7. Tom Galli
    Chances are you pay attention to new treatment developments. I was aimlessly scrolling through a social media app when I happened on a dramatic interview.  Everything was staged to look legit.  The interviewer looked like a TV reporter, the background scene looked like a doctor’s office, and the set up question “doctor, let me talk about cancer a little bit” got my attention. 
    The camera changes views to the doctor as the reporter says, “what are some of the things you’ve seen in terms of your patients?”  Then we see the doctor.  He looks like a doctor, well dressed with a confident assuring voice.  He changes the subject saying “a better thing to talk about“ and his name and titles flash and disappear on the screen: Peter Glidden, BS, ND (note not MD).
    He cited an unnamed study published in the Journal of Clinical Oncology in 1994, a 12-year program that looked at adults who had developed cancer, further clarifying adult cancer as “the main type of cancer we get here in the United States.” He described the study as a “meta analysis of people all around the world for 12 years who were treated with chemo…and the result?”
    “Ninety-seven percent of the time chemotherapy does not work.”  Dramatically and shaking his head for emphasis, he repeats the same statement, then he asks “so why is it still used?”  “Money”, he answers. “Chemotherapeutic drugs are the only classification of drugs that the prescribing doctor gets a direct cut of…the only reason chemotherapy is used is because doctors make money from it…period…it doesn’t work…97-percent of the time.”
    Continuing, he says: “We have lost the war on cancer in the United States…why…when you try to bring a reductionistic phenomena like drugs and surgery to bear on a holistic phenomena, you will completely miss the boat each and every time.”  Further he emphatically states, “if every girl in this country took 200-micrograms of Selenium, in one generation, we’d eliminate breast cancer by 82%; now why aren’t we doing that?”
    So, let’s take a deep dive into Peter Glidden’s claims and supporting data.  First, consider his probability predictions: 97-percent of the time chemo doesn’t work and 200-micrograms of Selenium eliminates breast cancer by 82% in one generation. These predictions sound authentic, like there was a test to determine outcomes.  But, no scientist, doctor, or engineer would ever describe a statistically based probability outcome using just a naked percentage. 
    There is always uncertainty and professionals bound uncertainty with a confidence level.  An engineer might say that concrete will achieve a 6,000 psi end strength but will disclose the testing sample size, mean, standard deviation and confidence level that justify the end strength statement. Test results never exactly replicate. The end strength will vary between some acceptable range.  But Glidden’s claim is precisely 97-percent.  It is unsupported.  Moreover, it is debunked in the literature.  Here is a good on-line summary about the unsupported claim .
    But, to even make a 97-percent statement, one would need to know, with certainty, the cause of death of each of the thousands of people who had chemotherapy.  Were autopsies performed? Might some have died of natural causes, traffic accidents or other illnesses?  A statistically significant record of “meta data of people all around the world treated for 12 years” does not exist.  Do they have data in the Fiji Islands, Kenya, Somalia, Bangladesh or North Korea?
    How about his 200-microgram Selenium cure for breast cancer?  He says it would eliminate breast cancer by 82% in one generation.  I’m not even sure I know what eliminate by 82-percent means. Think about how imprecise this claim is.  How long is one generation? How did you determine it was 82%? How sure are you it is 82%? I could drive a main battle tank through the gates of this claim’s imprecision!
    Now to his claim that cancer is not a reductionistic phenomena, suggesting that drugs or surgery misses the boat “each and every time.”  I’m one of those “each and every time” and my survival from drugs and surgery proves him wrong.  Does naturopathic treatment actually cure cancer?  I don’t know but neither does Gladden.  Here is some interesting reading about Naturopathic Doctors. 
    Peter Glidden’s video extolling a simple nutritional supplement as a cancer cure is compelling. He is dramatic, confident and to a diagnosed lung cancer patient facing an arduous regime of chemotherapy, persuasive.  Why bother with the chemotherapy if I can take Selenium and cure my cancer?
    If you are reading this, you or someone you care about has lung cancer.  Time is of the essence.  You have but three choices: do nothing, conventional medicine, and holistic medicine or some derivative of the same.  Do nothing is the least expensive alternative.  You pay nothing and might live.  Miracles happen. 
    Conventional medicine and holistic medicine will cost your money.  How do I make the choice?  I put my money on science-based conventional medicine treatment because treatment outcomes are repeatable.  Mark Twain said it best: “It ain’t what you don’t know that gets you into trouble. It’s what you know for sure that just ain’t so.”  Gladden is trying really hard to convince us he’s 97-percent sure chemo doesn’t work.  It just ain’t so.
    Stay the course.
     
  8. Tom Galli
    Remember the western movie scene — the debonair dressed pitchman rides into a small frontier town in a wagon whose canvas sides are emblazoned with Dr. Arturo Pedic’s Acme Elixir.  He sets up a stage, draws a crowd, and delivers the pitch.
    Yessireeebob! My specially formulated Acme Elixir is a sure-fired medicament for any illness. One bottle of this miracle wonder is guaranteed to cure any malady.  It is an antidote for ablepsy, ague, apoplexy, barrel fever, biliousness, dropsy, camp fever, consumption, french pox, grip, and even bronze john fever. Step right up folks. Ten dollars buys this marvel medicine!
    According to an American Society of Clinical Oncology opinion survey, almost 40-percent of Americans believe alternative remedies alone can cure cancer — that’s right 40-percent believe in Acme Elixir! Oh my, we’ve been teleported right back to 1870 era medical idiocy! Our collective faith in evidenced based cancer treatment has taken a severe hit.
    Why? I see a parallel to the campaign against childhood vaccines.  In 1998, a fraudulent research paper published in The Lancet asserted combined measles, mumps and rubella (MMR) vaccine caused autism. Innumerable scientific studies proved vaccines harmless, but blaming autism on vaccines was a sensational and compelling newsworthy story, and I remember the stories! 
    The internet allows the easy creation of a sensational and compelling newsworthy event — a cancer cure.  Webpages abound with astonishing survival stories from treatment by this, that, or the other alternative medicine thing. One common thread: all promise a sure cure for cancer. These are very believable presentations with videos offering jaw-dropping testimony bolstered by pseudo-scientific mumbo jumbo.  The internet today functions like the 1870 era snake-oil salesman!
    When diagnosed with lung cancer, one has but three choices: do nothing, alternative methods, or evidence based methods. Do nothing costs nothing and may work because cancer sometimes stops metastasizing without treatment.  Alternative and evidenced based methods cost you money.  Evidence based methods have another seemingly unrecognized advantage: outcomes are repeatable. Surgery, targeted therapy, precision radiation or immunotherapy works the same way for a very, very large number of people. Funny how hard it is to rundown actual results for large numbers of people treated with sure cure Acme Elixir.
    Stay the course.
  9. Tom Galli
    The modern world is full of scams, lies, untruths, and junk science.  Indeed, for a lung cancer survivor or caregiver, finding truth about lung cancer in our Internet world of mis-information is extremely difficult.  How do we know what to believe?  Perhaps you've heard of Belle Gibson, the health food purveyor and wellness guru, who spent years convincing us she had a cure for cancer.  Don't know the story?  Read it here.  How did we buy into Gibson's claims?  How do we avoid another scam trap? Here is my list for sniffing out a phony lung cancer cure scam.
    1. Ignore anyone who broadcast-messages a cure for cancer.  No one discovering a cure to cancer will announce it on a daytime TV show, or a TV infomercial.  The person discussing the "cure" will more likely act and talk like a nerdy scientist rather than a TV or movie personality.  The announcement language will be hyper-technical, interspersed with statistical terms comparing this to that under a given circumstance. The announcement could be televised but the audience will be filled with scientists and physicians.  But before the telecast, there will be a series of journal articles discussing and critiquing the findings.  The announcement will likely follow the form and tenor of the CERN Higgs Boson "god particle" discovery.  Watch that coverage and mentally compare it to an episode of The Chew.  If you don't hear words like "the combined difference of five standard deviations", you are listening to a hoax.
    2. The cure announcement won't be a sales pitch.  Think of the biggest news event you've ever seen, say the announcement of 9-11.  Discovery of a cure to cancer will be bigger -- much, much bigger!  It will be a world-wide-headline-news story and will be announced by a government.  Following the announcement, there won't be a 1-800 number or world wide web address to buy the cure!  It won't be a pharmaceutical company announcement.  Yes, new drugs showing progression free survival improvement are announced in pharmaceutical company news releases, but these are clinical trial results for a new therapy, not a "cure" announcement. And recall what a new lung cancer treatment drug commercial looks and sounds like.  There are all these legal disclaimers, side-effect disclosures, and restrictions on taking the drug.  A lung cancer or any cancer cure won't be a commercial advertisement of a drug or treatment. It will be a celebration and the biggest news event of your lifetime!
    3. Be very wary of a dietary supplement touted as a cure.  Cancer is a disease of the human genome.  Each of us has the genetic predisposition to have every kind and type of cancer ever discovered. Science understands the genetic nature of the disease and a changes in diet or taking a dietary supplement does not change or effect our genetic make-up.  A change in diet to lose weight, avoid diabetes, or improve cardiovascular health is a good thing, but no one claims taking a dietary supplement or a change in diet cures diabetes, heart disease or cancer, except scam artists.  A healthy diet has many benefits; curing cancer is not one of them.
    4. Self-promoters touting heroic cancer survival stories are scammers.  If you want to read and believe heroic survival stories, they are in forums such as this one.  Our survival stories sell hope; they don't sell product.  No one here is seeking fame for surviving lung cancer.  Certainly, no one here is getting rich surviving this awful disease.  Real lung cancer patients know that cancer sucks, treatment sucks, scans suck, the whole process sucks.  No one here sits for a TV interview claiming to beat lung cancer by taking this, that or the other thing.  While the first rule to being successful in sales is to sell yourself,  we are not selling anything.  
    5. Social media promotion is a scam in the making.  Who is going to offer a product or treatment that cures cancer on social media -- a scam artist!  Social media likes and shares are not scientific peer reviews.  The Super Bowl Justin Timberlake selfie boy achieved overnight fame, but for what? Perhaps he could use that fame to sell tee shirts, but a lung cancer cure?  Seriously?  And be wary of news outlets who publicize these miracle cure announcements.  TV and newspapers sell scam promoters also.  They publicize sensationalism so a 30 second report on your 5 o'clock news of a wellness guru who discovered a cancer cure is what -- a scam!  Do you know of TV reporters with a PhDs in Microbiology or Pharmacology?  Where do they get the competency to evaluate scientific claims?  Here's the point; they don't care about scientific authenticity; they want to generate sensationalism.  Media sensationalism sells media, not cancer cures.  Social media clicks sell social media, not cancer treatments.  
    Lung cancer is a horrible disease.  Sadly, there are horrible people in this world who take advantage of our misfortune to rob us of time and money.  Only our vigilance and common sense can protect us.  Remember, there is no such thing as a cancer cure, yet!  When one is announced, the world will know and celebrate.
    Stay the course.
     
  10. Tom Galli
    "Count-off...One, Two...Count-off...Three, Four...Bring it on down now...One, Two, Three, Four, One-Two...Three-Four!" 
    My life is filled with counting.  As a young soldier on the march, we counted cadence to stay in step.  The rhythm of the cadence was an elixir to the mile-upon-mile-upon-mile of forced march in full combat load.  They always scheduled the forced march on the hottest day, or the wettest day, or the coldest day of the year.  One memorable march was the day after a hurricane!  Weather or not, we marched and counted.
    After diagnosis with lung cancer, my life embraced a different sort of cadence.  There was the countdown to scan day, then time stopped waiting for results.  One...what time is it...just ten in the morning...the clock battery is out...is it back...how bad...how many nodules...how big...ten-oh-two...mets in the bones...liver also...scan tech didn't smile...he saw something...ohGod....  Life just stopped waiting for results.  Time stopped!
    Waiting for scan results is absolute misery coupled with measured doses of agony and anguish, torment, despondency and gloom thrown in for good measure!  Each day was a twenty-five-mile forced march that started but never ended.  Cancer sucks but waiting for scan results sucks squared! 
    Stay the course.
     

  11. Tom Galli
    I continue the tradition of anointing my toes with paint for each year I survive this horrid disease. Till year 14, I applied red paint; now it is Lungevity blue. The tradition of painting a toes was started by Dr. Phil Berman, a never smoker radiologist diagnosed with Stage IV, NSCLC. He started RedToeNail.com, an early online cancer survivor blog and painted 5 toes of life before lung cancer claimed him.  My tenure of life is a message of hope. If I can live, so can you.
    Stay the course.

  12. Tom Galli
    We are "locked and loaded" for our fifth Transatlantic cruise since I was diagnosed with lung cancer. This Sunday, we depart from Ft. Lauderdale and fifteen leisurely pamper-filled days later, arrive in Southampton, England. Along the voyage, we'll visit Bermuda (a first), the Azores (an other first), Lisbon (been there), Bilbao, Spain (a first), and Le Harve, France (been there). And best of all -- no jet lag! We are serious cruisers and are thrilled to cross the pond in a brand new ship (Celebrity Edge christened in Dec 2018). 
    Once we arrive in Southampton, we'll pick up a rent-a-car and proceed to get lost driving on the wrong side of the road as we explore England's picturesque Cotswalds region. We really do love getting lost in countries where we can almost understand the language! Then, after a week of land touring, we fly back home to usher in our summer.
    Vacations are important for everyone; they are vital for lung cancer survivors.  I find I need about 7 days of state change that removes me from day-to-day life and stress. On the eight day, I float in a mental sea of serenity and on this trip, I do hope for calm seas throughout our voyage.   
    Stay the course...we will!
    Tom
  13. Tom Galli
    Using the words free and invaluable to characterize lung cancer medical care is a hard sell. I’ve seen so many scams promising this, that, and the other thing that deliver nothing more than a money pit.  So I was indeed skeptical when Dr. David S. Schrump introduced his National Cancer Institute Intramural cancer treatment program, at our April 2018 LUNGevity Summit, with the words “no cost to patients, including travel and lodging.”
    Why didn’t I know about this resource?  I’ve encountered so many newly diagnosed folks who had no or inadequate insurance and who had to forgo treatment because of financial concerns. Yet, there is a sophisticated, taxpayer funded, medical system that designs “unique to patient” protocols including surgery, radiation, chemotherapy, and newly emerging treatments. And, it is free! All patients at the NIH are on investigational protocols, including those who are receiving standard care, so that their tumor tissues, blood, etc can be used to develop new cancer therapies. Once a patient is enrolled onto a protocol, care is provided at no cost. There is no third party billing, deductables, etc.
    Then on the second summit day, I learned Dr. Schrump’s Surgical Oncology Team is developing unique vaccine-like immunotherapies using tumor material surgically removed from a patient — a tailored and individualized immunotherapy agent. In an ongoing vaccine study, Dr. Schrump’s team observed immune responses to lung cancer-associated proteins in 60% of patients; several responders have had unusually prolonged disease free-survivals, supporting further evaluation of the vaccine. Dr. Schrump hopes that personalized vaccines may one day be an alternative to adjuvant or post-surgical chemotherapy, the current standard of care. Much more work needs to be done to determine to feasibility and potential efficacy of this approach.
    Moreover, they are using aerosol delivery methods as alternatives to IV or oral administered drugs to increase the uptake of drugs into lung cancer cells, and “prime” them for attack by the immune system. Indeed, his presentation was filled with very innovative methods of attacking lung cancer with promising results.
    If you are an American and don’t have the financial resources for lung cancer treatment or if your medical team has run out of treatment ideas, contact the National Cancer Institute.  You don’t need a physician referral. Email jan.pappas@nih.gov, introduce yourself and your diagnosis stage and type and put your phone number in the email.  Free and invaluable may indeed be words appropriate to use in concert with lung cancer treatment.
  14. Tom Galli

    Scanziety Builds Character

    By Tom Galli,


    Stay The Course Blog
    My CT was on August 30th but I needed to wait till today to get the results—from a new medical oncologist. He’s my kind of guy achieving undergraduate and graduate degrees in engineering before going to med school. We talked a bit on how things have improved since the dark ages of my diagnosis. I told him of my rabid scanziety driven by a 12-day dwell from test to results. He told me I’d not receive the same treatment if I was diagnosed today. I told him I was happy I was not being diagnosed today, or was I?
    I find inspiration when encountering stirring words while reading. An article about Joshua Chamberlain, a professor of languages and rhetoric at Maine’s Bowdoin College, told of his exploits as the country slipped into the Civil War. Chamberlain knew nothing about soldiering when Maine stood up its first regiment and declined the governor’s offer to command claiming insufficiency. But, he joined the cause as a lower ranking officer to learn how to soldier. He learned well. His leadership and commandership at the battle at Little Round Top during the second day of Gettysburg is still studied by current-day Army officers. For his courage, skill and character in that battle, he was awarded the Medal of Honor.
    On dedicating a memorial to Maine soldiers at Gettysburg, 25 years after the battle, Chamberlain asserted “it is character that tells.” Similarly, the tell in surviving lung cancer is character.
    Chamberlain said: “What I mean by character is a firm and seasoned substance of soul. I mean such qualities or acquirements as intelligence, thoughtfulness, conscientiousness, right-mindedness, patience, fortitude, long-suffering and unconquerable resolve.”
    A “firm and seasoned substance of the soul” that results in “unconquerable resolve” to survive. That essence is built day-by-day as we endure treatments, sometimes cycles of treatment, sometimes cycles-upon-cycles all with uncertain outcome.
    What was my scan outcome, you ask? All the typical magic nodules waxing and waning from scan-to-scan showed up. He laughed about me charting their location by spreadsheet. And we had the hypo-dense vs. hyper-dense liver lesion discussion, and a remark about that kidney stone that has been hanging around for 10 years. Then he told me he was reducing my oncology appointments to 1 time-per-year and changing up my scan to a low-dose CT chest type without contrast. He said that interval and type of scan is fully appropriate for one cured of lung cancer. I guess scanziety builds character!
    Stay the course.
    Tom
  15. Tom Galli
    I'm the guy who paints a toenail for every year I live beyond my February 4, 2004 diagnosis day.  This year our toes are LUNGevity Blue to honor the foundation that is dedicated to changing outcomes for people with lung cancer through research, education and support.
    There are many people who've been instrumental in my survival and making a life after; none are more important than my loving wife -- Martha Galli. If I can live, so can you!
    Stay the course.
    Tom Galli
  16. Tom Galli

    Twice A Veteran

    By Tom Galli,

    I’m an armed forces veteran. Also, a late stage diagnosed lung cancer survivor veteran. A smoker, I once had little doubt that smoking caused my lung cancer. Yet almost everyone in my immediate family smoked and none developed the disease. Could the unique hazards of armed forces training and warfare played a role in my disease? 
    Looking back, early in my career were demolition projects involving World War II era structures that were filled with asbestos. On deployment, burn pits predominated and everything was mixed with diesel fuel and burned in cut-down 55 gallon drums. As an engineer soldier, we trained extensively with demolitions and smoke and dust was a common exposure. I also directed fabrication of aluminum armored vehicles that included fumes and vapor from aluminum welding and superfine dust from machining. Lest I forget, there was the omnipresent smoke filled haze that lingered for months after Saddam decided to burn the Kuwait oil fields. I’ve inhaled a lot of stuff during the course of my Army career and maybe that played a role in the development of my lung cancer.
    Fortunately, there are new tools and programs for armed forces veterans that might help avoid a late-stage diagnosis.  The Veterans Administration has two important programs to early detect lung cancer: VA-PALS, a low dose CT screening program for at risk vets and the Gulf War Registry Health Exam for veterans. LUNGevity is adding its weight to support veterans. We’ve just established a Veterans Forum in the Lung Cancer Support Community that is now open as a support and information resource. A low dose CT scan is a good idea for those who served.
    Stay the course.
  17. Tom Galli
    I've survived a lot of medical treatment. The most sophisticated and creative was while in the care of an extraordinarily gifted, courageous and talented surgeon. We invited him and his wife to dinner to renew our acquaintance and review the bidding.  The dinner was memorable.
    I could launch into the details of my 8 surgical procedures performed by this brilliant man but that story is told elsewhere. Of more interest to this community is what are the indicators of brilliance in a surgeon?  Unlike general medicine or oncology, surgical encounter time is brief.  One can ask about reputation, but thoracic procedures are risky and outcomes are variable involving heart, lungs, vessels, transplants and a myriad of complex procedures to the engine compartment of the body.  Using my surgeon as a model, it might be useful to develop a means test of thoracic surgical competence that a survivor might use to evaluate suitability during the span of a short pre-surgical consultation.  Here is my list.
    Is your surgeon friendly?  Is this man or women one you’d enjoy having a coffee or a beer with?  Does conversation flow easily?  Does the surgeon respond to your elements of conversation?  Does he or she listen?  Do other practitioners or office staff enjoy being around him?  A surgeon that is pleasant is likely to be a surgeon that is sympathetic, benevolent and a true believer of the tenants of the Hippocratic Oath. Is your surgeon inquisitive? Surgery is a melding of art and science. The art is “what” to do and the science is “how” to do it. Thoracic surgeons are a small tribe that practice in a complex environment. When something new is discovered, your surgeon should be very interested in investigating it for application. If your surgeon already thinks all the “what” questions are answered, find another. Is your surgeon respectful? In your pre-surgical consultation, you ought to feel like the important one. Your medical condition needs to be acknowledged as important and your feelings, fear, anxiety, and uncertainty should to be taken into account.  If your surgeon doesn’t use your name or look at you or attempt to help you relax during the consultation, find another.  If your surgeon makes a grand entrance, surrounded by a posse of assistants, and talks to them about your case, find another quickly! Is your surgeon decisive? At the pre-surgical consult, there is one key decision to be made: operate or do not operate.  This ought to be made then and there. If your surgeon feels the need to discuss your case with others, find another.  There is so much uncertainty in lung cancer surgery and each encounter will require a decision. Your surgeon needs to come equipped for making decisions, alone. Is your surgeon acutely intelligent? Compose a non-surgical question on the surgeon's interest or hobbies ahead of the consultation. Listen for passion and detail that indicates sincere interest and evidence of accomplishment. Intelligence starts with curiosity and leads to ability to assimilate knowledge and use it in cross functional ways.  A surgeon with a photography interest would know depth of field (the f-stop setting on a camera) is analogous to layers in skin, tissue structure, and visual focus precision.  Photography concepts relate to surgery yet it is a diverse field of intellectual pursuit. Avoid those who are interested only in surgery or who say they don’t have time for anything in their life but surgery.     We had a wonderful reunion made even more special by the attendance of my daughter, son-in-law and granddaughter.  My daughter met my surgeon 15 years ago while I was near death. She is also a beneficiary of his skills.  Ten years after my surgeries, I asked my surgeon to help find a skilled brain surgeon to remove my daughter’s complex meningioma. He moved heaven and earth to do so. Add compassion to my list.
    Stay the course. 
  18. Tom Galli
    “Drug-related deaths have grown to be a major US public health problem over the last two decades.  Between 2006 and 2015 there were more than 515,000 deaths from drug overdoses.…” This from a March 26 article in Science Magazine. The death rate averages 5,722 per year over the cited period.  Further, “the drug epidemic is a pressing concern among policymakers.” This concern translates to a $865 million research budget for the National Institute on Drug Abuse. This budget funds $151,117 per individual drug-related death.
    This year, 163,199 Americans are projected to die from lung cancer. The National Institute of Health Lung Cancer research budget for 2018 is $282 million.  This level of research amounts to only $1,727 per individual death. 
    Lung cancer kills 28 times more people per year than drug addition, but the drug addiction research budget is 87 times larger then lung cancer’s on a per-death basis.  Clearly, our public health policy makers fail to understand the meaning of the word major.  The major and largely unaddressed US public health problem is death from lung cancer.
    Stay the course.
  19. Tom Galli

    Tis The Season

    By Tom Galli,

    Today we pause to celebrate new life, life continued, and hope renewed.  For me this is a holy season but it has a much broader meaning, especially for those struggling with lung cancer. Christmas Day is a celebration of new life and a continuation of life. The new life is Christ while continuation is everyone alive.  Including especially, those who live with lung cancer. We have at first glance an insurmountable challenge: to live with a disease that consumes our body with cells made of our body.  Indeed, our disease is a paradoxical phenomena.  Yet, we live. We rise above the biological paradox, thus our celebration of life continued.
    The hope of the season is reflected in many ways. On earth's scale, each day length changes as we orbit towards spring. Thus hope is realized as we progress in day length and temperature change. On the lung cancer scale, we hope for good treatment outcomes and new treatment methods. Fortunately, outcomes are improving, sometimes dramatically as are methods. But the progression of seasonal change is neither smooth nor completely predictable. There will be uncertain days ahead.  Similarly, as lung cancer survivors we will face disappointment and perhaps reversals.  But like the season, treatment is a progression: a change over time.  And the renewal of hope for survivors is the belief that progression toward success will continue.
    My wish for all lung cancer survivors is the gift of life continued.
    Stay the course.
     
     
  20. Tom Galli

    Hope Is A Good Thing

    By Tom Galli,

    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.
  21. Tom Galli
    Early on, we learn Algebraic equations with only one solution. Then we encounter equations with two solutions -- Quadratic Equations. Consider: x2 + 3x – 4 = 0. This has two solutions:  x = -4 or x = 1. Both are correct; one is negative and one is positive. Algebra students get very comfortable with solutions having a positive and negative outcome -- lung cancer survivors are less comfortable!
    The positive outcome for lung cancer is extended life. But like quadratic equations, there can be negative outcomes that are less desirable.  Mine is chronic pain.  So to the question, how does one fit a negative outcome into the positive?  No, Algebra does not help.  But, for those in treatment or surviving after treatment, preparing for life with negative outcomes is helpful.
    My chronic pain has two primary and many secondary causes.  I have peripheral neuropathy -- numbness in fingers and toes including a burning sensation in toes and pain in the foot joints.  It is a common Taxol side effect, and we informally call it “taxol toes.”  Also, I have nerve damage caused by quite a few surgeries to my right chest that is chronically painful. How do I fit these negative outcomes into life?
    My strategy is to tolerate chronic pain until bedtime.  Then something must be done or I won’t sleep.  I’ve cycled through over-the-counter, then prescribed sleep medications.  Both worked for a while.  Doc found a study suggesting a therapeutic effect for Xanax on chronic pain.  He prescribed a 0.5mg dose at bedtime, allowing an increase to a total of 1.5mg.  This relaxes me and makes me drowsy.  It works about 6-in-10 nights. 
    A secondary cause sometimes drives pain above chronic levels. These are: chemotherapy induced joint pain; muscle cramps; stress, anger and excitement; sneezing and coughing; and flying on aircraft.  The joint pain, an in-treatment side effect, required narcotic medication in every case to relieve.  Reliance on narcotics has two downsides: an inability to think and function normally the next day and constipation. However, other secondary causes occasionally require narcotic medication to achieve relief.  Because of the downside to narcotics, we’ve developed a couple of unique pain abatement procedures that may be of interest.
    Our first strategy is to apply prescribed lidocaine transdermal patches to incision scars and or feet in combination with Xanax.  Since lidocaine dosage is limited to 2 patches, my wife cuts them into strips and fits them along my incision scars, and applies them to my feet.  A pair of tight fitting socks are stretched over my feet to keep them in place. When the offending pain spike is either in my chest or feet, a full 2-patch application is used.  The patches are applied in time to allow the Xanax to work and I sleep, hopefully.
    The next works only for feet and is a back-up strategy if lidocaine fails.  My wife uses an ace bandage to wrap reusable frozen Blue Ice packs to the bottom of each foot.  The cold is very uncomfortable for a couple of minutes, but in a short time my feet are numb and if I’m lucky, I sleep.
    Muscle cramping is a long term side effect from chemotherapy. It stems from low Magnesium blood levels.  I take at least 500 mg of Magnesium supplement per day.  My oncologist would rather I take 1000 mg, but I suffer digestive system revolt. I learned that almonds provide 75 mg of Magnesium per ounce so I snack in lieu of a second pill.  Regardless, I still experience one to two cramping events per day.  When they occur anywhere near my feet or chest, chronic pain soars.   There is however, no remedy for cramps.  The worst occur in the middle of the night and wake me up.
    Archimedes, the ancient Greek hydrologist, provided an explanation for why immersing up to my neck in a swimming pool eases incision pain.  The upward buoyant force of the water offsets the gravitational pull on chest incisions thus minimizing pain.  Almost every day our community pool is open, I spend hours in the water.  This does not eliminate pain but reduces it noticeably. On leaving the pool, the normal level returns but it is very therapeutic.  Lying in a bathroom tub, unfortunately, does not work because there is not enough water for complete submersion.  A hot tub works fine, but there is no difference in pain relief from water temperature. 
    Flying in a commercial airliner also spurs chronic incision pain.  Most airlines pressurize their cabin between 6,000 and 8,000 feet pressure altitude.  This lower-than-sea-level pressure expands my chest cavity increasing incision pain.  All commercial flights hurt but long flights are very painful often requiring a dose of narcotic medication in flight.  Not flying is the only remedy.  Those having thoracic surgery have long complained of incision pain after commercial air flights and cabin pressure is the cause.
    Another secondary cause is extensive coughing and sneezing.  Sneezing is particularly bad when it is a “surprise sneeze”.  During the worst pollen events, I stay indoors and I try and avoid school age children to keep the chest colds in check, especially when school is in session.  The last secondary cause I have the most control over: stress, anger and excitement.  Admittedly, excitement is the easiest to control except when the Dallas Cowboys are playing my beloved Philadelphia Eagles.  These two games a year are indeed stressful and since I live among cowboys, someone is going to be angry over the outcome.
    My wife reminds me when I complain too much that I am lucky to be alive.  What’s a little pain given the alternative.  She’s right.  Doc reminds me to avoid scheduling things in the morning so I can sleep-in late if pain interferes.  He’s right.  Football season is right around the corner and it is a good thing games are scheduled in the afternoon and evening.  
    Now if the Eagles start winning, everything will be fine!
    Stay the course.
  23. Tom Galli

    Breathe Deep

    By Tom Galli,

    How does one find joy in lung cancer?  I find some of mine by celebrating survival, and there is no better way than to attend a LUNGevity sponsored Breathe Deep event.
    Our's was a pleasant but breezy fall Texas day and about a hundred of us showed up to the celebratory walk-jog-run event.  Our pleasant jaunt around the Arlington Texas park also raised thousands of dollars to undertake LUNGevity focused research for new diagnostic and treatment methods for lung cancer.  But, while fund raising is vital, celebrating survival is even more important.  When we meet and walk together, we become a powerful symbol of hope.  We become energized.  We find a moment of joy.
    Forum moderator Susan Cornett and I met each other for the first time at today's event.  We've been internet connected for nearly 2 years but our in person meeting was a wonderful experience.  We talked about vacations taken and planned, survivor memories, and shared life experiences.  I took this photo of Susan with her mom and dad who turned out to help Susan celebrate life after lung cancer.  We had a grand time.
    Stay the course.
    Tom

  24. Tom Galli
    Perhaps you’ve heard?  The federal government is a large insurance business with a standing army.  Social Security is insurance — a specific kind of insurance called an annuity.  The insured and employer pay premiums every month to fund a defined benefit at a specified year (normally your federally mandated retirement year).  Everything is peachy-keen till a disability affects work because one has late stage lung cancer.  And, when a lung cancer survivor files for disability, allowed by law and regulation, the federal government almost always disapproves.  So, here are some suggestions for obtaining disability benefits by disapproval.
    1. Expect to be Disapproved. I know a lot of folks with lung cancer.  Among this population, only one was approved on initial application.  He passed before he received his first benefit check.  My company provided disability insurance carrier filed my first application.  I had an unresolved bronchopleural fistula after a pneumonectomy that required a second and third surgery and indications of tumors metastasized to my remaining lung.  My claim, filed by a former Social Security claims adjuster, was disapproved.
    2. Involve Your Doctors.  The disability application requires you to disclose all your physicians and medical providers.  Then, the administration asks for medical records, reports and observations. Doctors are busy folks; oncologists are bombarded by SSA requests for information, and for good reason.  Late-stage lung cancer (including treatment and side-effects) is often disabling.  Inform your medical providers of your application and ask them to help by responding to the request for information.
    3. Complete the Application. The Social Security Administration is a bureaucracy.  Bureaucracies love to find “nits” in applications and return with some very vague description of the problem. This delays a decision and delays payment, and these are typical insurance company behaviors. Read every word of the disability application process (it is all online at www.ssa.gov) and check your application closely to ensure it is complete and error free.  Have several family members check it also after reading the application instructions. Ensure you completely describe your symptoms including those caused by side-effects.  Also, completely describe how these symptoms affect your ability to stand, sit, walk, bend over, think, concentrate, and etc. (Hint - read the criteria that will be used to determine your disability finding and use those words as descriptors).
    4. Understand the Fine Print. There is payment delay: six full months after the date of disability (date shown on claim approval letter). Depending on other income sources, payments may be taxable. You are not found to be permanently disabled.  Regulations allow a review of your status after start of disability payments. It is not a good idea to join an adult softball team while receiving disability payments! You are not eligible for Medicare until 24 months after receipt of first disability payment. Your disability payment will be less than your full retirement benefit, and when you reach retirement age, your retirement benefit will not be increased. 
    5. Lawyering Up. Filing the initial disability application online is a good idea, as long as it is properly completed and supported by doctor reports and observations.  But when denied, it is time to level the playing field and retain a lawyer. Not any lawyer, but a law practice that specializes in Social Security Disability appeals.  By law, they cannot charge you for their services.  They collect fees directly from the Administration if an administrative law judge approves your appeal.  And, most important, they know what they are doing and it is in their financial interest to do a good job on your appeal!
    The disability process is deliberate, lengthy and frustrating. Like lung cancer, success involves persistence. Insurance companies don’t relish paying claims and every approved disability claim turns a premium into a disbursement.  But, Social Security is insurance with disability payment provisions that you pay for!  If you can’t work, apply, appeal and persist!  
    Stay the course.
  25. Tom Galli

    Second Opinions

    By Tom Galli,

    I had an interesting chat with my general practitioner over the Fourth of July holiday.  He’s a gentleman rancher with an abundance of tomatoes so I brokered an invite to his beautiful ranch to relieve him of his abundance.
    A social cup of coffee segued into a wide ranging conversation about medicine, ranching, politics, engineering and cancer treatment.  Doc has lots of opinions but they are founded on deep study and comparative analysis.  But, unlike most intelligent people, he rarely uses technospeak but rather explains complex topics in easily understood words and concepts. Thus fostering interesting conversation. The topic turned to patients seeking second opinions and physician egos.  His words are worth capturing: “I don’t mind a patient seeking a second opinion…I get paid.”
    Doctors are important people in our society. Our adulation of their skills causes us to forget that in a pay for service system, customers have a right to express dissatisfaction and seek alternative practitioners.  If you don’t like the medical service you pay for, find someone who provides better service.
    Stay the course.
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