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Susan Cornett

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  1. Like
    Susan Cornett got a reaction from EMandM for a blog entry, 6 years   
    Today marks 6 years since my diagnosis. In 6 years, I've had surgery, chemo, more surgery, thyroid cancer, more chemo, radiation and SBRT. But I have survived and (mostly) thrived. The path hasn't been easy and I have a number of side effects that are trying, but I'm here. At the end of the day, that's all that matters. 
    Looking forward to next year's cancerversary!
  2. Like
    Susan Cornett got a reaction from Joycecotton for a blog entry, 6 years   
    Today marks 6 years since my diagnosis. In 6 years, I've had surgery, chemo, more surgery, thyroid cancer, more chemo, radiation and SBRT. But I have survived and (mostly) thrived. The path hasn't been easy and I have a number of side effects that are trying, but I'm here. At the end of the day, that's all that matters. 
    Looking forward to next year's cancerversary!
  3. Sad
    Susan Cornett reacted to Tom Galli 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.

  4. Like
    Susan Cornett got a reaction from catlady91 for a blog entry, 6 years   
    Today marks 6 years since my diagnosis. In 6 years, I've had surgery, chemo, more surgery, thyroid cancer, more chemo, radiation and SBRT. But I have survived and (mostly) thrived. The path hasn't been easy and I have a number of side effects that are trying, but I'm here. At the end of the day, that's all that matters. 
    Looking forward to next year's cancerversary!
  5. Like
    Susan Cornett got a reaction from LouT for a blog entry, 6 years   
    Today marks 6 years since my diagnosis. In 6 years, I've had surgery, chemo, more surgery, thyroid cancer, more chemo, radiation and SBRT. But I have survived and (mostly) thrived. The path hasn't been easy and I have a number of side effects that are trying, but I'm here. At the end of the day, that's all that matters. 
    Looking forward to next year's cancerversary!
  6. Like
    Susan Cornett got a reaction from Tom Galli for a blog entry, 6 years   
    Today marks 6 years since my diagnosis. In 6 years, I've had surgery, chemo, more surgery, thyroid cancer, more chemo, radiation and SBRT. But I have survived and (mostly) thrived. The path hasn't been easy and I have a number of side effects that are trying, but I'm here. At the end of the day, that's all that matters. 
    Looking forward to next year's cancerversary!
  7. Like
    Susan Cornett reacted to Tom Galli for a blog entry, Eighteen Years but No Toes   
    Today, I celebrate 18 years of life after diagnosis with lung cancer. Normally, I'd paint my toes and post. Of course after 10 years, I had to invite more feet to the photo-celebration. But, on this day, indeed, in this week my hometown is ice-bound and my planning skills have waned because my celebratory bottle of Lungevity blue nail paint is exhausted. So, no photo this year.
    There are so many lessons I've learned during my diagnostic, treatment and survival journey. Two among them bear mention: The objective of treatment is life; do something you enjoy with the extension. And, if I can live, so can you. Indeed...
    Stay the course.
    Tom
  8. Like
    Susan Cornett reacted to LCSC Blog for a blog entry, And the "Scancer" Is ...   
    ... stable, with a side of shrinkage, however modest. No jeopardy here, final or otherwise. Simply more of the same here, but hardly ho hum. A  status quo with which I am fond of writing: I can live. Promises and guarantees left the building on that fateful day in late February, 2009 when an oncologist who I had previously never met summarized my condition and identified it as stage IV, non small cell lung cancer. A "terminal" disease if there ever was one, and of course there are many. And along with that bombshell came the excruciatingly unpopular prognosis: "13 months to two years." I was 54 and a half with no history of cancer in my immediate family.
    Much has happened and many medications prescribed since I infused my initial chemotherapy back in early March, 2009. Most of which you regular readers know. If you recall anything from my 12 years of weekly cancer columns, it is that regular diagnostic scans: CT scans, bone scans, P.E.T. scans and MRIs have been recurring nightmares. Every three months, I am scheduled for some type of scan, sometimes more than one ("BOGO," I call it), which based on its findings will determine my subsequent course of treatment. If the results are encouraging, a change in my treatment is unlikely. If, however, tumors are growing, newly appearing or spreading then it's "Katy bar the door," as we say in New England. Which means, hang onto your hat, among other things, as a new health situation presents, and one without an automatic solution. After years of conversations with my oncologist, I've learned: The best one can hope for is a definite maybe. It's this unpredictability which fills my day - and night.
    Nevertheless, my life has gone on way longer than my oncologist anticipated. It may be because I was misdiagnosed (as a Georgetown Cancer Center oncologist suggested) and had a slow moving form of papillary thyroid cancer rather than an aggressive form of lung cancer, which kills more often than it cures. Or, I may simply be my oncologist's "third miracle," as he's fond of saying. Presumably, my positive attitude and good humor about my circumstances in conjunction with the many supplements I ingest with alkaline water exclusively have contributed to my unexpected survival. Regardless, as Frankenstein might have said: "I'm alive."
    As scary as Frankenstein, Dracula or Lon Chaney ever was, a cancer diagnosis tops them all. Being told by a doctor you have never met that you have two years to live, at best, is as you might imagine, nearly impossible to process. It's not exactly what you had planned on or expected hearing when you sat in the doctor's office. Yet, as Ralph Edwards used to say, "This is your life." And as many others have said: "You're stuck with it." And as grim as you feel about your future, this is no fairy tale. As always, reality beats make-believe any day, and in this instance, not in a good way.
    But I am in a good way. I am still typing, among other activities. And after having just received a "looks good" comment from my oncologist concerning this week's CT and bone scan, my warranty has been extended for another 90 days, when the results of my next quarterly scan will be emailed. Until then, I am in high cotton. To say I'm not worried is of course naïve, but in the interim, between scans, I am in "the rocking chair, good buddy," to invoke a familiar CB-ism. This is how many cancer patients live: from one scan to the next. It's not ideal, but it is a living, and one for which I'm extremely grateful and fortunate to still have. It may not have been the life I expected, but I'm glad to live it nonetheless.
  9. Like
    Susan Cornett got a reaction from DMiller for a blog entry, 5 Years!   
    Today marks 5 years since my diagnosis. It seems like just yesterday but also a lifetime ago - at the same time. It brought me to the club I never wanted to join but introduced me to so many wonderful people. I am thankful for my medical team and all of the research and advancements that got me to this point. 
    Looking forward to marking next year's cancerversary with all of you.
  10. Like
    Susan Cornett got a reaction from Deb W for a blog entry, 5 Years!   
    Today marks 5 years since my diagnosis. It seems like just yesterday but also a lifetime ago - at the same time. It brought me to the club I never wanted to join but introduced me to so many wonderful people. I am thankful for my medical team and all of the research and advancements that got me to this point. 
    Looking forward to marking next year's cancerversary with all of you.
  11. Like
    Susan Cornett reacted to Roz for a blog entry, The Roscopal Effect   
    I’m telling this story so that others who find themselves in a similar situation, ask this question, “What about the “Roscopal effect?”
     
    When diagnosed with NSCLC-mucinous adenocarcinoma, in the summer of 2017, I believed that my medical team had all the answers when it came to my treatment. However, after a lower left lobe lobectomy in September 2017 (with an 8.3 cm mass), I started to ask more questions and gather more information. My thoracic surgeon and I decided together that the next course of action should be removal of my upper right lobe which was done in October, 2017 via open thoracotomy (with a 9.7 cm mass). Both surgeries had clear margins and did not have lymph node involvement. Biomarker testing revealed that both masses were basically identical, KRAS G12D. Surgery was followed by chemotherapy in Jan and Feb 2018, “to be sure any microscopic cancerous cells were killed.” I was NED (No Evidence of Disease) until about October 2018. Follow-up CT’s started to show gradually increasing “spots” in both sides of my lungs. Since there is not a targeted treatment for KRAS G12D, I went into a clinical trial in May 2019. This was for a personal cancer vaccine with immunotherapy (Tecentriq). Follow-up CT after 8 weeks on the trial showed accelerated growth of the cancer in both sides of my lungs so the trial was ended. After reviewing upcoming trial research, it seemed that the best course would be to wait for a trial to activate that included SHP-2 and MEK inhibitors. However, as more and more time crept by, the trial was not available. The Covid pandemic most likely contributed to this. At this time, I contacted a radiation oncologist to see if there might be a potential treatment for me with radiation. The day my radiation mapping was complete for standard radiation, the email about an available slot for the trial appeared and I needed to make a decision. So, in December, 2020, I started the Phase I clinical trial that involved taking oral medications (RMC 4630 and Cobimetinib). Follow-up CT after 8 weeks on the trial showed accelerated growth of the cancer on both sides. The mass in the lower right lobe was now about 9 cm in size. My oncologist suggested the next line chemotherapy (Taxotere/Taxol and Ramucirumab), but I remained skeptical about my odds of doing well with that approach. 
     
    Here is where the story gets more interesting. 
    Since my diagnosis I had been connecting with the online Lungevity forums. I found the supportive community helped me tremendously and I was also offering my own experiences to others. In the summer of 2020, I started attending the Friday night Lungevity zooms. Soon, I was participating, as often as possible, on Friday nights. One of my friends in the group, a 17 year lung cancer survivor, Tom Galli, suggested that I contact my radiation oncologist again, and ask about a form of SBRT or what Tom likes to call “precision radiation.” Tom explained to me about the abscopal effect, and somehow I knew that I had to give it a try. What did I have to lose? 
     
    The Wikipedia definition states, “The abscopal effect is a hypothesis in the treatment of metastatic cancer whereby shrinkage of untreated tumors occurs concurrently with shrinkage of tumors within the scope of the localized treatment.”
     
    I reached out to my radiation oncologist and his initial response was that the abscopal effect rarely works, so what’s the point in doing it? I suggested that since I didn’t have any other viable options, it would be worth trying, because I really believed that the “Roscopal effect” would work. After consulting with my medical oncologist, he called me back and agreed to try 7 sessions of VMAT, (Volumetric modulated arc therapy), aimed at the largest tumor in the lower right lobe, however, he further stated that most likely it would not be successful. From February 18-26, 2021, I underwent 7 VMAT sessions. Then, I had my follow-up CT on March 20th. 
    The results were available on the portal on Sunday March 21st. My instincts were correct. The CT showed reduction not only in the area targeted by the treatment (lower right lobe mass), but also in all cancerous areas in my right lung. In addition, the cancerous areas in my left lung also showed reduced size. When my doctors connected with me on Monday, they were amazed and surprised by the results. I was the only one who completely expected the “Roscopal effect” to occur. My radiation oncologist continues to be cautiously optimistic and is eagerly awaiting results of my next CT scan at the end of May to see if there is stability or further reduction. I want everyone out in the lung cancer community to know that it’s definitely worth the shot. Even if my joy in having my first CT that showed reduced size in the cancer might prove to be short-lived, it has been worth every moment. This needs to be studied and hopefully clinical trials will occur to find out which patients would benefit from this form of treatment. I believe that if it wasn’t for my Lungevity connections and Tom Galli specifically, this would not have happened. Everyone needs to be their own advocate and push for the treatment that feels right. I did that and the effect-”Roscopal.”

     
  12. Like
    Susan Cornett reacted to Lisa Zarov for a blog entry, LUNG CANCER, COVID AND GRIEF – IT’S COMPLICATED   
    Being part of the lung cancer community for almost 5 years now, I am often in awe of the fiercely close, supportive and loving connections that are made between its members. We learn together, advocate together, and celebrate life together. And, when someone in our community dies – which unfortunately happens often – we mourn together. For many, it is a deep grief we feel – for the person we lose, their loved ones, and ourselves.
    Yet during the COVID-19 pandemic, many survivors have had additional grief – grief over moments and experiences we have lost. And the pandemic has been a thief of so many of them. Like everyone in the world, we want to be with loved ones, hug, celebrate, and travel. And we want to be physically present when it is time to support a fellow survivor, or to mourn one. Losing moments and experiences like these can be much more devastating to those living with Lung Cancer. Our heightened value of the preciousness of time can make our grief more potent and complex.
    If you are experiencing grief, what can you to do to take care of yourself? Processing grief is a very individual experience. However, the most important thing I encourage is for you to experience every feeling, no matter how painful and disruptive. If you push your feelings aside, they will inevitably find their way back to you, and usually in ways that are more difficult to heal from. Talk to trusted friends about your grief. Write about it. Express your grief artistically, through art, music or poetry. And for those who are struggling, therapy can be so helpful, as most therapists have a great deal of experience working with grief and loss.
    Lastly, don’t forget to check in with your loved ones who are grieving.
    Connecting, even if not in person yet, can be a lifeline.
    Lisa Zarov, MSW, LCSW 
     
    __________________________________________________
    LUNGevity understands that a lung cancer diagnosis can be overwhelming.
    To answer your questions, the Lung Cancer HELPLine offers toll-free, personalized support for patients and caregivers at any time along your lung cancer journey. Our oncology social workers are available to help you manage your emotional, financial, and support challenges.
    Dial 844-360-5864, Monday through Thursday, 10:00 am to 6:00 pm, and Friday, 10:00 am to 5:00 pm (Eastern time). Call as often as you need—LUNGevity is here for you with tools to help you navigate your lung cancer diagnosis.
  13. Like
    Susan Cornett got a reaction from LouT for a blog entry, 5 Years!   
    Today marks 5 years since my diagnosis. It seems like just yesterday but also a lifetime ago - at the same time. It brought me to the club I never wanted to join but introduced me to so many wonderful people. I am thankful for my medical team and all of the research and advancements that got me to this point. 
    Looking forward to marking next year's cancerversary with all of you.
  14. Like
    Susan Cornett got a reaction from LexieCat for a blog entry, 5 Years!   
    Today marks 5 years since my diagnosis. It seems like just yesterday but also a lifetime ago - at the same time. It brought me to the club I never wanted to join but introduced me to so many wonderful people. I am thankful for my medical team and all of the research and advancements that got me to this point. 
    Looking forward to marking next year's cancerversary with all of you.
  15. Like
    Susan Cornett got a reaction from BridgetO for a blog entry, 5 Years!   
    Today marks 5 years since my diagnosis. It seems like just yesterday but also a lifetime ago - at the same time. It brought me to the club I never wanted to join but introduced me to so many wonderful people. I am thankful for my medical team and all of the research and advancements that got me to this point. 
    Looking forward to marking next year's cancerversary with all of you.
  16. Like
    Susan Cornett reacted to LCSC Blog for a blog entry, Cancerversary   
    I realize I'm cancer-centric, especially in these columns, but for some reason that centricity didn't acknowledge my February 27th cancer anniversary. That date, in 2009, is when I was originally diagnosed with stage IV, non-small cell lung cancer, the "terminal" kind. I remember it well. It was a Thursday. It was the initial Team Lourie meeting with my soon-to-be new best friend: my oncologist. A week or so prior, I had received the first indication - from my primary care physician, that my life was about to change: the results from the previous surgical biopsy confirmed a malignancy. It's rather an awkward dynamic to meet someone - for the first time, who immediately becomes the person who will control, manage and, in effect, be responsible for whether you live or die, and for how long. From then on, he becomes the most important person in your life; a person who is now entrusted with your most precious asset: your health.
    It was not an unfamiliar experience for me meeting someone cold and attempting to build a rapport. As a long-time salesman, that was my modus operandi. Whether in person or over the telephone, I have regularly been engaged in this kind of pursuit: trying to create an environment of trust and honesty in order to reach a shared goal. Previously, it was about making a sale; now, it was about understanding my options and agreeing on a course of treatment. However, the one major difference between these two pursuits was control, or rather the lack thereof. Cancer was now in control as compared to my life as a salesman where I chose it because it allowed me to be in control: who I called, when I called, scheduling appointments, et cetera. Soon it became apparent, I was no longer in Kansas anymore. I was in the hands - figuratively speaking, of my oncologist - in Maryland: my new boss. If I wanted to live beyond the "13 month to two year" prognosis I was given, I would have to be as attentive and compliant as possible.
    In spite of our shotgun-type of relationship, we have persevered together, which has enabled yours truly to acknowledge, albeit a week or so later, an amazing achievement: 12 years and still living. Not that my circumstances have become de rigueur, hardly; especially since the thyroid cancer diagnosis of late has put into question my original non-small cell lung cancer stage IV diagnosis. Apparently, after making a few inquiries, it appears unlikely that we can litigate the past any more than we can guarantee the future. It seems that cancer, whichever type, will be a part of my life and likely a part of my death as well.
    I'm surprised how it's (my life) all turned out and grateful to whomever for what I'm not entirely sure. Nevertheless, somehow it's worked and here I am: alive and reasonably well. Not cancer-free and never to be cured of my stage IV papillary thyroid cancer; still, it's a living and it sure beats a dying. Treatment and scans and all will continue, but so what? Originally it appeared my die was cast, but as it has happened, not nearly so fast.
    All of which is nothing new, really. A cancer diagnosis is all about change, ceding control, and hanging on for dear life as you will be up and down and all-round, emotionally, physically and spiritually. Expecting a normal kind of pattern to your future life ended the moment a biopsy confirms a malignancy. Either you adjust to the vagaries of your cancer life or you will die having failed. I think I have succeeded beyond my wildest expectations. So much so that I didn't even acknowledge my "cancerversary" last week. I guess I needed the week off from worrying about it and didn't even realize it. I have to admit though, it felt good not focusing on it for a change. Almost like I was a "normal" person.
  17. Like
    Susan Cornett got a reaction from LUNGevityKristin for a blog entry, 5 Years!   
    Today marks 5 years since my diagnosis. It seems like just yesterday but also a lifetime ago - at the same time. It brought me to the club I never wanted to join but introduced me to so many wonderful people. I am thankful for my medical team and all of the research and advancements that got me to this point. 
    Looking forward to marking next year's cancerversary with all of you.
  18. Like
    Susan Cornett got a reaction from jack14 for a blog entry, 5 Years!   
    Today marks 5 years since my diagnosis. It seems like just yesterday but also a lifetime ago - at the same time. It brought me to the club I never wanted to join but introduced me to so many wonderful people. I am thankful for my medical team and all of the research and advancements that got me to this point. 
    Looking forward to marking next year's cancerversary with all of you.
  19. Like
    Susan Cornett got a reaction from Curt for a blog entry, 5 Years!   
    Today marks 5 years since my diagnosis. It seems like just yesterday but also a lifetime ago - at the same time. It brought me to the club I never wanted to join but introduced me to so many wonderful people. I am thankful for my medical team and all of the research and advancements that got me to this point. 
    Looking forward to marking next year's cancerversary with all of you.
  20. Like
    Susan Cornett reacted to Tom Galli for a blog entry, Trekking The Green With Seventeen   
    Today I celebrate 17 years surviving lung cancer. COVID is a nightmare. But, I am celebrating nevertheless. Life after lung cancer is precious and most worthy of celebration.
    You might note I’ve run out of toes to paint. I do this to honor Phillip Berman, MD, a radiologist with Stage IV lung cancer, who was instrumental in my survival. Phil resolved to paint a toenail red for each year he survived “this madness.” He painted 5 before passing; I continue the tradition using LUNGevity Blue. My reason is: if I can live, so can you.
    Stay the course.
  21. Like
    Susan Cornett reacted to LCSC Blog for a blog entry, "And Awaaay We Go!"   
    As Jackie Gleason would say as he segued from his monologue into the sketch comedy that followed on his Saturday night entertainment hour on CBS. So too does my entertainment - or lack thereof, continue. Six weeks or so after my treatment for thyroid cancer (three pills a day) began, per doctor's orders, we have put a halt to the proceedings. Due to increasing values in my bi-weekly lab work (monitored exactly for this purpose), specifically my kidney and liver functions, I am standing down and standing by. We will retest this coming Thursday and then wait for further instructions (smaller dose, intermittent dose, no dose?). In addition, some of the side effects that I am experiencing (fatigue, shortness of breath, a little depression/a little malaise) also encouraged my oncologist to pause the treatment. Hopefully, it's "the pause that refreshes," as Bud Collins the long time tennis commentator for NBC once said to describe female tennis star, Amanda Paz.
    The lab work is the first line of defense and indicator, along with side effects as to what might be going on inside. A scan would be useful as well but due to the radiation exposure, the doctors try to keep its use to an absolute minimum. And since I'm not scheduled to be scanned for another month (every two months), my status is best determined by how I feel and what the lab work shows. In the interim, I will ride the roller coaster of emotions and fear and try to enjoy the reduction in the side effects (which I can do. I'm good that way). I just have to hope that the values in my next lab work go back down or I may very well go off the rails and onto some other ride that might not be so manageable.
    All that remains is "all that remains." Nothing in my life/caner routine is likely to change much. Again, what I have I've been told is that what I have incurable: stage IV papillary thyroid cancer, the kind that doesn't respond to radio iodine therapy, so every minute of every day will be spent hoping, praying, wondering and waiting to see if the end is near or thankfully not near at all, like a mirage, almost. Just another day in my cancer conundrum. As Tom Branson said on an episode during the final season of Downtown Abbey about something completely unrelated: "What a palaver!" But that's really what being a cancer patient is all about: confusion, lack of clarity, few guarantees and changes in your attitude along with your latitude if Jimmy Buffet were writing this column. If my wife were, it would be about going with the flow. However, since I'm writing it, it's about changes, constant change; sometimes more of the same, something completely different. and being prepared, always, to go up and down and all around and everything in between. It's highs, it's lows and its all-overs, too. It may not sound like a great way to make a living, but I can assure you, it sure beats the alternative.
    As my mother used to say: "enjoy poor health," especially since it doesn't seem likely I'll be changing horses anytime soon. But I can do it. I'm a Red Sox fan; I've lived with disappointment and determination my whole life - and thankfully, I've lived to see some World Championships, too. The goal is to try and keep moving forward and remain positive. Like my old friend Ray use to say: "my attitude is my blood type: B+." What's another blip on the cancer radar? I've been on it so long now, since Feb. 2009, that it would be abnormal not to appear. And since the experts have been telling me that it's unlikely I won't be off the grid until it's too there's either a new grid or a new drug, I am happy to take a break in the short term if it it helps in the long term. Because the goal is to finish, not to falter.
  22. Like
    Susan Cornett reacted to Tom Galli 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
    Susan Cornett reacted to LCSC Blog for a blog entry, Safeguarding My Future   
    Whether or not I'm certain about my attitude toward being a dual cancer threat (non-small cell lung and papillary thyroid, cancer), only my subconscious knows for sure. This was recently made clear to when I provided my supermarket shopping preferences to my wife, Dina, who for reasons she takes very seriously (my health) won't let me go into stores to buy anything. Ergo, my list. And I may add, there is much adieu about those preferences. It's like a negotiation. Though not exactly partisan, the debates rage on and I'm lucky if I see more than a handful of requests honored from my list. In effect, Dina is my gatekeeper (you'll note I didn't say jailor).
    There are some requests which are rarely obstructed: health and fitness, fruits and vegetables, meat and potatoes and any other non-dessert/snack-type item. I'm not going to bore you readers by saying how long it's been since I've had a Hostess cupcake or an Entenmann's cake or a TastyKake anything; I wouldn't want you to feel sorry for me. In spite of this food censorship, I'm hardly wasting away. Though I've lost some weight, mostly due to my low iodine diet a few months back (as part of my thyroid cancer treatment), it was weight I could certainly afford to lose.
    Now that I've lost it, Dina doesn't want me to gain it all back. Which I can understand and appreciate. Overweight often leads to any number of problems: hypertension, diabetes and even heart disease, to name a few possible complications. Still, I have my food requirements (OKAY, needs) and unless I get them, Kenny will become even more of a dull boy than he already is. So far, Dina is not budging. I wouldn't quite say she's the immovable object, but she definitely remains an obstacle to my caloric happiness.
    And the 'caloric happiness' to which I refer are basically Kenny's four food groups: cake, cookies, candy, and ice cream, which also explains my presumptive epitaph: "He never met a carbohydrate he didn't eat." But when the conversation moves to other, less controversial items, the conversation is much less problematic and maybe even indicative of who I am, what I've become, and how I assess my future prospects (life expectancy).
    When one receives a cancer diagnosis, your brain gets rewired (figuratively speaking) and your choices become sort of a window to your soul. Things you want/don't want become tells of what's being debated in your brain. Initially, after hearing your cancer diagnosis, it's unnatural almost to want what you used to want. It feels trivial. Your frame of reference and context, narrow and shorten. When the future you anticipated is snatched away, it's not only time which is taken. Hopes, dreams, and normalcy are snatched away as well. And sometimes, without even realizing it, a request is made which inadvertently illuminates the route to the light at the end of the tunnel.
    That moment occurred for me during last week's supermarket list discussion. Aside from the usual stuff that likely would need to be re-ordered, I ordered something new, without it being considered in the context of cancer (basically an abbreviated timeline). I asked Dina to order me an eight-pack of soap bars, an amount of soap that would probably last a few months, at a minimum. A 'minimum' which you don't necessarily anticipate. Not that a cancer diagnosis automatically shortens your life, but generally speaking, it is bad for business, if you know what I mean? A business which, apparently, I'm now willing to invest in. Maybe time is on my side after all.
  24. Like
    Susan Cornett got a reaction from PaulaC for a blog entry, Ready for yet another new normal   
    I haven't been on here much in the last few months, maybe a year. Work kept me much busier than usual but I *think* that is going to finally level out now that we've hired a new director and a couple of additional consultants. I also find it more difficult to break away from my work when my daily commute is now just a walk down the hall. I'm fortunate - and I know it - because I've been able to continue working without interruption. My employer has offices in CA, FL, NJ, OH, and TX and all of our offices were closed through May. They continue to encourage us to stay home through June and to come back at our new pace. 
    Now I have to figure out what this new "new normal" looks like for me. When do I return to the office? Should I return? When can I go see my parents? I know that we don't have a crystal ball but I'd love to have an idea of what's next. I take an annual beach trip with my girlfriends in September but I'm beginning to think that won't happen this year. Two of my friends have jobs that require them to interact with people all day. Even if I drive to our destination, they will all be coming off an airplane and possibly exposing me. I know the beach will still be there next year but this is one of those trips that I look forward to all year.
    I see Super Doc in a couple of weeks and Super Pulmonologist in July. Hopefully they'll have some thoughts on all of this. Until then, I'll continue to stay at home. Ugh.
    Please stay well, friends.
  25. Like
    Susan Cornett got a reaction from Roz for a blog entry, Ready for yet another new normal   
    I haven't been on here much in the last few months, maybe a year. Work kept me much busier than usual but I *think* that is going to finally level out now that we've hired a new director and a couple of additional consultants. I also find it more difficult to break away from my work when my daily commute is now just a walk down the hall. I'm fortunate - and I know it - because I've been able to continue working without interruption. My employer has offices in CA, FL, NJ, OH, and TX and all of our offices were closed through May. They continue to encourage us to stay home through June and to come back at our new pace. 
    Now I have to figure out what this new "new normal" looks like for me. When do I return to the office? Should I return? When can I go see my parents? I know that we don't have a crystal ball but I'd love to have an idea of what's next. I take an annual beach trip with my girlfriends in September but I'm beginning to think that won't happen this year. Two of my friends have jobs that require them to interact with people all day. Even if I drive to our destination, they will all be coming off an airplane and possibly exposing me. I know the beach will still be there next year but this is one of those trips that I look forward to all year.
    I see Super Doc in a couple of weeks and Super Pulmonologist in July. Hopefully they'll have some thoughts on all of this. Until then, I'll continue to stay at home. Ugh.
    Please stay well, friends.
  26. Like
    Susan Cornett got a reaction from Tom Galli for a blog entry, Ready for yet another new normal   
    I haven't been on here much in the last few months, maybe a year. Work kept me much busier than usual but I *think* that is going to finally level out now that we've hired a new director and a couple of additional consultants. I also find it more difficult to break away from my work when my daily commute is now just a walk down the hall. I'm fortunate - and I know it - because I've been able to continue working without interruption. My employer has offices in CA, FL, NJ, OH, and TX and all of our offices were closed through May. They continue to encourage us to stay home through June and to come back at our new pace. 
    Now I have to figure out what this new "new normal" looks like for me. When do I return to the office? Should I return? When can I go see my parents? I know that we don't have a crystal ball but I'd love to have an idea of what's next. I take an annual beach trip with my girlfriends in September but I'm beginning to think that won't happen this year. Two of my friends have jobs that require them to interact with people all day. Even if I drive to our destination, they will all be coming off an airplane and possibly exposing me. I know the beach will still be there next year but this is one of those trips that I look forward to all year.
    I see Super Doc in a couple of weeks and Super Pulmonologist in July. Hopefully they'll have some thoughts on all of this. Until then, I'll continue to stay at home. Ugh.
    Please stay well, friends.
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