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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.

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.

Baseball is a game that requires patient players and fans. Like lung cancer treatment, there is a lot of waiting for something to happen. Also like lung cancer, the game is unpredictable. A single pitch can change the outcome of a game like a single cell can change the outcome of treatment. And like lung cancer, baseball has many uncertainties and these are defined by odds. The best hitters succeed a little better than one in three times; the best teams winning about six in ten games. Baseball players need to persevere against low odds of success to achieve victory. So do lung cancer patients. A lung cancer diagnosis is devastating. Recurrence after treatment is common and traumatizing. We ought to prepare for the distress of recurrence. Treatment, even for those diagnosed at early stage, is not likely to be a walk-off home run. I was not prepared for treatment failure. How common is recurrence? A National Cancer Institute study suggests about 33 percent of stage IA and IB patients experience a reoccurrence. Up to 66 percent of stage IIA, IIB, or IIIA experience a reoccurrence. Interestingly, these percentages are virtually identical for both adenocarcinoma and squamous cell lung cancers. What about stage IIIB or IV disease? The study reports recurrence about half that of lower stages but suggests this is due to competing risk of mortality. Including surgery, my treatment success average was a dismal 1 for 5. That translates to a baseball batting average of .200, yielding a quick trip to the minor leagues. I had four recurrences after no evidence of disease (NED) treatments. We didn’t know perseverance was a requirement and we were not prepared. How should we prepare? Here is what I didn’t do. Have a frank conversation with my oncologist seeking information on recurrence likelihood. Share this information with my family to ensure they were prepared for bad news. Finally, celebrate my NED state by fully engaging in life. NED is that extra life treatment buys and we did not take maximum advantage of it. A sidebar benefit of surviving is accumulating lessons learned. I now completely understand that lung cancer is a persistent malady that is difficult to eradicate with unpredictable treatment outcomes. Like the best baseball players, we need to take our turn at each new treatment with a fresh perspective, forgetting our last experience and striving only to put the ball in play and arrest our disease. Stay the course.

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.

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

Today marks 4 years of survival! By most standards, my path hasn't been as difficult as others. There have definitely been highs - when my hair grew back, my lashes grew in longer - and lows - two recurrences and a secondary cancer diagnosis. But as I say often - I'M STILL HERE! I tell my story to anyone who will listen. People need to know that lung cancer doesn't have to be an automatic death sentence. Does it suck? Yes. Will it change your life? Definitely. But you move forward, one step at a time. Forward is forward ,no matter the speed. I am looking forward to the Breathe Deep Denton event in April. I enjoy visiting with the other survivors and bringing attention to this cause. I've also been asked to speak at a function in March so I'll be sharing my story again. The more the public understands lung cancer and all of its causes, the better our funding will be for research. Most importantly, though, is this: I stumbled across this site one night when I was looking for answers. I have met wonderful friends - in person and online - here. Those friends have made this journey easier. Thank you, all.

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.

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

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.

Today I celebrate three years of survival! I am so happy to have found this community of people. You all make this journey so much better.

Twenty years ago, on this date, I was handed a surprise diagnosis of lung cancer in an emergency room. The X-ray showed a very large tumor in my right lung that perfectly explained hemoptysis, the reason for my ER visit. My GP admitted me for a diagnostic work-up, and I spent 4-days inhaling albuterol while being scanned, poked, and prodded. In the hospital, I met my medical oncologist and pulmonologist who told me I had about a 7 x 2.5 cm tumor filling the main stem bronchus of my right lung. The tumor was bulging into my airway causing vigorous coughing and complicating an unsuccessful flexible bronchoscope biopsy. Several drama-filled weeks later, my thoracic surgeon performed a biopsy to reveal squamous cell carcinoma. Unusually, no lymph nodes were involved. Staging was complicated; no lymph node involvement suggested IIIA but size pointed to IIIB. There were few resources in those days explaining lines of treatment or prognosis. The American Cancer Society suggested smoking cessation as a treatment method. Dr. Google revealed I might have 6 months of remaining life. Treatment started with chemoradiation to shrink the tumor and allow a pneumonectomy and ended with precision radiation to fry a reluctant tumor camping in my left lung (metastasis after surgery). I had 4 recurrences and 5 lines of treatment before achieving no evidence of disease (NED) in March 2007. My medical oncologist deemed me cured of lung cancer in March 2021 and then retired from practice. What have I learned? Medical statistics predicting remaining life by stage and type of lung cancer are imprecise and inaccurate, even today. Why? Listen to this elegant essay “The Median isn’t the Message” by Professor Stephen J. Gould that kindled the first ray of hope for a good outcome. Depression does not improve by ignoring symptoms. Thankfully, doctors who treat lung cancer today are assessing for depression and referring to professionals. Expect to be depressed and cooperate with treatment. Faith and hope matter and I believe they influence outcomes. I am a man of religious faith, but faith is an innately human trait. Religion is not required to believe treatments not seen are working to combat lung cancer, and faith fosters hope, and “hope is a good thing and good things never die.” Finally, consider that if I can live, so can you! Stay the course. Tom

Hello Everyone! I'm not new. In fact, my Adenocarcinoma (Pancoast) lung cancer journey began in October 2004. I was diagnoised at State IV. Mets to chest wall and liver. I was given 2-6 months with treatment and 1 to 2 years with treatment. I've had reocurrences. One time, I was told to get my affairs in order. Yes, I'm still here. Thank God. It started off crazy (as I would imagine, everyone else did too). But, what I am searching for are connections. People like myself. Someone to relate to. Anyone who has the same issues (or close) as mine. I have had my share of issues over the past (soon to be 17 years). The feelings, the thoughts they keep coming back to a word I discovered a few years ago. Guilt. Then there is the treatment. I'm still on Tarceva. I've been on Tarceva since 2005. Sometimes I feel stuck in time. The world moves on. My issues might be unique. I don't know. Sooo.... I have lost so many friends and family members during this 17 year survivorship. I can no longer count them on my fingers. I meet people at my checkups and I want to encourage them. But, I know in my heart they are asking WHY NOT ME??? You see, there is no reason. There is no medicine. No answer. Nothing I've done or didn't do. It was all out of my control. I've got nothing to say. No support. No advice. No secret. Nothing. That leaves me feeling like a failure. Like I'm not doing what was intended for me to do. But, what exactly is it I'm supposed to do? Doctors see me at my checkups. They read the scans. They check out new areas of interest. They say I am a miracle. I go back and forth between 3 month checkups to 6 month checkups and now again I have graduated to a yearly checkup. Please do not misunderstand, I am grateful. I am scared too. I am always scared. When I was diagnosed, my son was 6 years old. I grieved all the things I would miss. I have a 9 month old granddaughter now. Imagine that. I have everything to be grateful for. Yet, this old feeling seeps in. I think it's called Survivor Guilt. And I know it's a lonely place to be because there aren't many. I want more! I want you to know that I cry for you. All of you. I am so sorry that many of you are going through the worst fight of your life. Make everyday count. That's all I can do. That's all I did. I talk to God alot! I no longer take things for granted. I am not a miracle. I am so much less. And Everything and Everyone I see is so very beautiful and so precious. Life has it's share of hard times. This body, this Cancer did not define me! I continue to turn it into a Blessing. Not an End. My body may end one day, but I won't. Since I am always searching for the Why (because I am human) I ran across this and I thought it would be worth sharing... Isaiah 57:1-2 King James Version "The righteous perisheth, and no man layeth it to heart: and merciful men are taken away, none considering that the righteous is taken away from the evil to come. He shall enter into peace: they shall rest in their beds, each one walking in his uprightness."

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

“You know, I heard that green tea/apricot pits/jogging/apple cider vinegar/kale/broccoli/mustard greens/fresh avocados/yoga/this miracle powder/oil/salve/etc., etc., etc. will cure your mom’s cancer. You really need to try it. It worked for my cousin’s friend’s stepmom’s brother. Let me get you the information!” If you have ever had a loved one with cancer, you’ve heard these offers. You know exactly how they sound. The personal heroism of a friend or neighbor or acquaintance or coworker, offered bravely to your face, can feel so affrontive and offensive. This is especially true when medical treatment plans are not working; when your loved one is especially vulnerable for any number of emotional or physical reasons; or— wait for it— when the person offering the miracle cure is otherwise uninterested, uninvolved, and/or unhelpful in the actual caregiving of the patient. There. I said it. Do not come up to me offering miracles, period. I don’t have the energy to explain to you that, while broccoli is great and we should all definitely get more exercise, they alone are not going to abate the tumors in my mom’s lungs. I don’t have the emotional wherewithal to be polite to you while staring in disbelief that you yourself have fallen victim to believing some scheme. And if you have not asked if we need anything, or brought us a cake or pie or casserole or loaf of bread in the four years since she’s been diagnosed, then you have an especially low level of credence or gravitas with me in terms of your interest in my mom’s well-being. If you are a caregiver, you know exactly what I mean. We are on the same page right now. We are all preachers and choirs (or pots and kettles) at once. But…that doesn’t mean we know what to do about these offers of help. As annoyed or hurt or exhausted as we may be, the fact remains that these are relationships we may need to maintain. Telling folks exactly how we think or feel about their unhelpful “help,” using all the words we want to use, is not exactly conducive to maintaining the relationships. So, we need a coping mechanism. We need a tool. At some point, off the cuff, in one of my more emotionally raw moments, when faced with one of these offers, I let slip from my mouth: “you know what would actually be helpful?” And, just as if in a sitcom, I jumped; surprised at my own words; time slowed to a crawl; I turned my head; I looked at my acquaintance, as if in molasses-slow-motion, terrified that she would be offended; and… She wasn’t! She looked right back at me, unaware of my sitcom-terror-moment, and said “what? What do you need? Let me help!” And my world shifted from a sitcom to a Disney princess movie. Time sped back up, birds chirped, the sun came out, the clouds parted, and music started to play. Well, that’s how it felt, anyway. Seriously: I was floored. Her genuine interest in helping had been proven, and I realized: she just didn’t know HOW to help, or WHAT to offer, so she had reverted to the only tip/trick/hack that she knew of on the topic. My point is: as caregivers, we are so consumed by all that we have to do that we cannot imagine anyone in our lives or networks being oblivious to our reality. But, my friends, they are. All of our friends (and relatives and acquaintances and neighbors and coworkers) are understandably consumed by their own realities. When they occasionally can fall out of their own orbits to see what we are up against, it takes a lot of time to catch up with the status of things, let alone to study up on what we might need or not need. This is time that the folks in our networks usually don’t have, my friends. So, if they are aware of some one-size-fits-all grab-and-go panacea, of course that’s what they’re going to offer. These are, after all, unfortunately readily available and highly advertised. Here’s the point: on that day that the skies cleared and my friend stopped in her tracks to ask what I actually needed, I learned that her heart was in the right place. Her intentions were good, even if ill-informed. And, I would venture to guess, that's the case 9x/10. And so, the “pivot” was born. This became my tool, and I offer it to you here in hopes that you can make use of it as well. (If you're a fan of the movie or musical "Legally Blonde," or if you love "Clueless" or "Mean Girls" or anything like that, this can alternatively be referred to as the "bend and snap." Don't ask). The “pivot” is just the name I give to my blatant usury of the assumed good intentions of the poor soul who offers me snake oil. Here is the script: Person: “I’m sorry to hear about your mom’s lung cancer. Have you tried making a smoothie from donkey fur? I hear that cures cancer.” Me: “OH my gosh, thank you, that’s so nice of you to tell me. Hey, ya know, I’m really covered up on Thursday. Can you bring mom some lunch?” BOOM. Done. Weapon deployed. (The caveat, of course, is that you have to have a ready-made mental list of assistance that would be useful to you. Frankly, I think this is always good to have, so that you can always respond productively when folks ask what they can do, no matter how they actually ask the question). Anyway: my favorite part of using the pivot tool? You will *very quickly* separate the wheat from the chaff. You will immediately be able to gauge whether the person offering the unhelpful help was actually interested in helping, or only being unhelpful after all. And, at the end of the day, they might actually come through.

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.

“I’m sorry, sweetheart these are tumors in your lungs and a form of lung cancer”. These were the words spoken to a vibrant, healthy 36-year-old female on October 19, 2017, by the thoracic surgeon. I knew that things were probably not good when he came in and asked if I was alone. Unfortunately, I was alone. Looking back, that day seems like a blur. I remember the ladies at the checkout desk asking how I was doing as they ask so many patients all day long. It’s mere customer service, right? I never made eye contact and mustered enough energy to say the word “fine”. I was far from fine, but I just wanted to get out of there. I never cried in the doctor’s office that day, but walking down that winding hallway and through the parking lot felt like I was carrying cinder blocks for shoes around my feet. The minute I got in my car and closed the door was the moment that I completely lost myself. I have cancer. I am going to die. My parents are going to have to bury their only child. My world felt like it had crashed. The days and weeks ahead were just amazing considering my new circumstances. People loved on me like I had never been loved on before. I received cards and texts and all sorts of support, but a part of me wanted to tell them that I was still the same person and I appreciated the cards of support, but that I wasn’t dead yet. Please hold the flowers too. My lung cancer diagnosis was a complete shock as it is to so many. However, I was asymptomatic and cancer was the last thing on my brain. I was hospitalized for a Bartholin Cyst. I had my yearly exam already scheduled with my OB/GYN and this exam was far from routine. I explained to the nurse that I was in pain and was running temperatures between 101-103⁰. I visited the local emergency room twice to attempt to acquire some relief and was incorrectly diagnosed. My OB/GYN admitted me to get antibiotics started quickly and mentioned a minor surgery, but before I went to the hospital, he wanted me to have a CT of my abdomen to identify the cyst prior to any procedure. Thankfully, the tech caught just the lower portion of my lungs on that scan and the radiologist noted lung nodules. When I went back to my OB/GYN for my check up, he mentioned the lung nodules and ordered a full chest scan. He informed me that people had benign nodules and they could be there from my severe infection, but that he wanted to just make sure that it wasn’t anything. The next day he called me to inform that the nodules were still there and he would like for me to see a Pulmonary Specialist. I agreed and the Pulmonary Specialist was very concerned about the number of nodules in my lungs which were over 100 scattered across both lungs. He conducted a bronchoscope and a needle biopsy for which both were non-diagnostic and I was then punted to the Thoracic Surgeon. The Thoracic Surgeon removed three wedge sections and sent the pathology off to Mayo Clinic in Arizona. After further molecular testing, my oncologist educated me on the different mutations and the path of treatment that would be taken for each of them. It was determined that I was Stage IV due to both lungs being involved and was positive for T790M. I began Tagrisso as a first line on November 11, 2017. After 6 months on this drug, my last scans read “barely perceptible”. I will keep taking Tagrisso until resistance occurs and hopefully there will be another inhibitor to take its place. When I was first diagnosed, I would literally wake up in the night in a panic. I couldn’t sleep, eat or function normally. I started browsing the internet for support groups and pages as well as social media. I found the LUNGevity private patient groups on Facebook and asked to be added to every single one of them. I began telling my story and people started responding to me and sharing their stories. Strangers were sending me encouraging private messages. I saw people living and thriving with an incurable, life-shortening disease. I found hope. I started sleeping and not crying so much. Finding those support groups really made the initial journey a bit easier. Although we were strangers, we were brought together by a common bond. I’ve since been able to meet some of those people in person through the HOPE Summit and my “family” has grown by leaps and bounds. I would have never met these incredible people without lung cancer. Receiving a lung cancer diagnosis is not something any of us would have willingly signed up for, but I am thankful that I was able to find out before it spread all over my body and treatment options were expunged. I am also thankful for the perspective shift. I now know what it means to live each day with intent. The days of merely existing are over. It’s time to live and love life to the fullest because I now understand the value of each day that I am given.

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

This is story I did with LUNGevity - I was very honored to be given the opportunity to share my how Covid has changed my life, especially as a Lung Cancer patient. I'm sure most of you can relate. COVID and Me By Lisa Haines When I was diagnosed with Stage IV lung cancer in 2015, I was extremely sick and my prognosis was pretty grim. I decided then, with the time I had left, I was going to live each and every day to the fullest. I wanted to do all the things that my husband and I had always talked about doing when we retired, such as travel and spend more time with family and friends, while I was still healthy enough to do so. Luckily, I responded well to treatment and have since been stable and doing well. I have been able to do a lot of the things I decided I would do and crossed many things off my bucket list. In fact, I had planned to celebrate my 5-year Cancerversary in Vegas with family and friends in March 2020. Unfortunately, that’s when the COVID-19 pandemic began. The pandemic has really inhibited my mentality to “live each and every day to the fullest” and taken away my ability to do my bucket list items. I imagine this change in mentality is something that many people with late stage cancer are facing right now. As cancer survivors, we are an incredibly vulnerable population. It’s important for people to realize how significant the risks for lung cancer patients are. Many pre-existing diseases are risky, but many of us with lung cancer have damage to our lungs already or have had a surgery and only have one lung, making the risk of serious illness worse for us. A lot of people don’t seem to understand this. Worse, some people seem to think that because we are so vulnerable, we should just stay home until the vaccine is available. What they don’t understand is that we already have our life expectancy cut shorter than we ever expected. It feels like COVID is stealing more precious time from me in so many ways. It’s a near-impossible catch-22 that this virus has put us in: try to protect your health but also live at the same time. That’s why this pandemic has been really difficult for me. The hardest part is what the virus doesn’t allow you to do. Prior to March 2020, I spent about 20-30 hours a week babysitting my grandkids, who live close by. I would see my 86-year-old mother, who also lives nearby, often. I would visit my son, who lives out West, several times a year. Once the virus hit, I stopped doing all of these things. I felt trapped in my house. As time went on, it was harder and harder to stay isolated. I would do video calls with my family, but it would just make me feel worse because it wasn’t the same. It became a quality of life issue for me. I am looking at my life in a shorter span to some degree, yet someone was telling me that I can’t see the people I cherish in the time I have left. Another added stress for me is that my husband is an essential worker and was still required to go into work each day. We of course took added precautious to ensure he wasn’t bringing home the virus, but there’s no way to be certain; there are just so many unknowns. I’m not sure what I would have done if he did get the virus. It’s really difficult to be in the same house and not touch things. All you can do is hope for the best and frequently hand wash. For me, managing the virus precautions while living with lung cancer ultimately became balancing living life and staying alive. I decided to talk to my doctor about the possibility of seeing my family again. He asked me many questions and ultimately, based on my responses, he was able to understand my need to be with them and gave me his blessing to do what I felt was safe for me. He explained that when COVID starts to affect our quality of life, it is important for lung cancer patients to make choices that they feel are best for them. I am lucky to be stable, off treatment, and not currently immunocompromised, so I decided it as best for me to see my family again. It was my choice to decide what I wanted; I made the choice to live my life. At first, I only saw my family outside and with masks. However, the day my youngest granddaughter cried because she didn’t recognize me, my heart broke. A week or two later, I started to go inside their home. I used extra sanitizer and washed my hands constantly. As I began to feel safer and the COVID case counts in our area went down, I resumed my normal life with them and go to their house on a regular basis. I consider it my second home. We do our best to take precautions, but I know I’m taking a risk. However, for me, quality of life wins out over COVID. I think the best advice I can give for someone struggling is to try to keep as busy as possible. I have used the extra time to keep more involved with advocacy for lung cancer. I even became a LifeLine mentor. I have also been joining the Virtual Meetups; they offer great support and are super helpful for people who might not have family nearby and feel isolation. While things have improved since the spring, I am starting to worry about winter. Right now, we spend as much time outside as we can. I’m not sure what we’ll do when it gets colder and that’s no longer possible. I will very likely need to isolate again this winter and that’s scary and sad. Currently, I have 5 airline tickets that are waiting for me to use. Every day I stay Stable I am hopeful that the time will come for me to be able to use them again. I hope for a safe and effective treatment for Covid, so that it’s safe for us all to get back out again. I look forward to the day that Covid is a bad and distant memory for all. It's not only stealing time, but as also taken far too many precious lives - such a devastating virus in so many ways. About me: Lisa Haines is a Stage IV lung cancer survivor who lives in Northeastern Massachusetts with her husband and two Rescue Chiweenie Dogs. She is Mom to two amazing adult sons, one living locally in MA and one living in CA. She’s been blessed with two sweet granddaughters, Harper now 3 ½ and Hazel who turned 1 this summer. Her grandchildren came into her life after her diagnosis and truly were a dream come true. At the time of her diagnosis, she did not have any grandchildren, but being a “Nanni” was something she dreamed of for many years and they have added even more joy and love to her life. They are now another huge inspiration in her cancer journey. She plans to be here for many years to watch them both grow up. Other than spending time with her granddaughters, family and friends, she also enjoy travel and can’t wait to be able to get back out to San Diego to see her son. She enjoys supporting other lung cancer patients and is very active with LUNGevity. She is also a moderator for two other Lung Cancer Support Groups on FB. Advocacy has become especially important to her and it’s something she wants to pursue long term.

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.

Facing a lung cancer diagnosis changes a person’s perspective about what matters in life and what doesn’t. Being diagnosed with cancer makes you put absolutely everything else to the side, or totally out of mind. You have the chance to let back in only the things that really matter back into your conscious mind. If you can do that, and spend more time focusing on things that really matter in the present moment, you will have completely changed and improved your mind and your life. I still get caught up in feeling anxious or scared about what might happen in the future and the negative impact it could have on my family, especially my wife and daughters. What’s helped me has been to realize that they are thoughts – they don’t have a physical presence anywhere and if you observe them but don’t chase after them, they go away. If I could give advice to someone newly diagnosed, I’d probably want to say a few things. 1. Slow down. Information is going to be coming at you really fast and it can be overwhelming, especially with the internet making everything move at hyper speed. Take your time to digest what’s out there in terms of treatment options, support systems, heavy medical information, etc. 2. Get yourself into a respected cancer center as soon as possible. Find an oncologist that you trust and have a good relationship with, and then TRUST that doctor. 3. Take everything, except what your oncologist tells you to your face, with a grain of salt. There is a ton of real, semi-bogus and totally bogus information out there about magical cures and treatments. Ask your doctor about all of them but, in the end, do what he or she advises. 4. Take a step back, look at the road ahead as objectively as you can and try to be practical. It is the “C” word but, after all, it’s an illness not a curse or a death sentence. Come up with a treatment plan together with your doctor, follow that plan and do what you need to do in order to stay healthy 5. Don’t give cancer more power than it already has by thinking you can’t face it and just giving up. You can face it. Maybe not today, or all the time, but eventually and most of the time you can. Lung cancer is just the same as any other kind of cancer. It will take the people you love just as heartlessly as any other form of the disease. It’s really good at taking people away; men and women, smokers and non-smokers, old and young, any race and origin. In fact, it’s better at that than most other cancers. We could all get cancer, and none of us would deserve it. We should fight it with research funding, trials, promoting new and existing treatments, by helping people pay for treatment, and everything else at our disposal. Not giving lung cancer the fight it deserves leaves us all that much more powerless to stop it from taking away someone we love.

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.

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.

"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.

I'm in the middle of my quarterly scan appointments. While I was waiting for my blood draw yesterday, I noticed a couple that was apparently new to the oncology clinic. The wife is the patient and, when she was called into the lab, her husband got up to walk with her and she told him she was fine, just going for a blood draw. I looked at his face and saw fear and I just wanted to give him a hug. This is the part I hate the most - when we look into our loved ones' eyes and see their fear. I just want to fix everything and I can't; we have so little control over this part of our lives. I have no idea why she was there or what her diagnosis is, but I definitely said a prayer for them last night.

My name is Eleanor I have cancer, but it is not who I am. I am not a number or the result of a lab test. My name is Eleanor I am a baby at my mothers breast. I am a toddler being thrown high in the air by my father and giggling. I am a young girl playing with my dolls and my trucks. I am a teenage girl going on my first date full of nervous anticipation. I am graduating high school and trying to figure out what next. I am a young woman walking down the aisle with the love of my life. I am an employee and a homemaker I am a new mother. I love my family, my friends, roses, cooking and reading. I love watching sappy old movies and going through a box of tissues while munching on popcorn. I love to dance and sing. I am a woman, a wife, a mother, a sister, a granddaughter,a niece, an aunt, I am a grandmother and a great grandmother. I am all of these things and more but what I am not is a disease. I have cancer and it may destroy my body but it cannot touch my spirit or my soul. So you see although my body may have cancer it does not have me. My name is Eleanor.

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!

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.”

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.

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.

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.

My story begins in May of 2013. I am a high school special education teacher and for weeks I had a nagging but dry cough, I wasn't worried about it at all as I was running 3 miles a day, just completed a 5k road race and was very rarely sick. I finally saw my primary care physician who put me on a Z-pack and I went back to my normal life. A few weeks later since the cough had not gone away, I went back to my doctor who gave me a prescription chest x-ray, which I immediately threw on the passenger side of my car and forgot about it. Fast forward 2 weeks later, on a whim I was passing by the x-ray facility and decided to run in and get and a chest x-ray. The next day my doctor called and said he saw something on my lungs that he didn't like and was pretty sure it was cancer. A few days later a bronchoscope was done, and as I was waking up from it I heard a doctor use the word malignant and I knew he was talking about me! Never have I been so scared, I actually made them show me the name of the person on the results, thinking this is a mistake. Non-smoker, 58 year old healthy individual, never gave a thought to lung cancer. It is now 2019 and I have seen targeted therapy, chemo therapy, have had 2 surgeries. I have been on immunotherapy for 2 1/2 years, which has kept me stable. I think maybe the key to success is exercising religiously and making the body stronger for each day that follows. With exercise comes a strong mental attitude… two winning combinations!

I was diagnosed with Stage IV lung cancer in September 2014. Like many people, my diagnosis came as a huge surprise to me and my family. A friend told us about the Breathe Deep Kansas City Walk that was happening in our area. We called our team The Village People because we like to say, “It takes a village” to fight this thing. The Breathe Deep walks provide an opportunity to raise awareness and money in your own community. It’s very powerful. I attended my first National HOPE Summit in Washington, D.C. in 2015. Lung cancer is so isolating and overwhelming. Then you get there and meet other survivors and caregivers and experts. I feel like I always leave HOPE Summit with 150 new friends and then I don’t feel so lonely when I get home. The next year my wife and I attended the 2016 Hope Summit together, she finally understood how these friends I had been talking about for the last year could be so intertwined with my health and healing. We made even more friends and keep in touch all year long through social media and other events around the country. Once you get to HOPE Summit, it’s so empowering that you want to get involved. I found out about the LifeLine Support Partner program at HOPE Summit. LifeLine is nice because you can work remotely and there’s an opportunity to give back. My mentor, Matt Ellefson, is one of those people who LF relies on to have multiple mentees and he was very inspirational for me because of our similarities and what we’ve been through. It was a very good fit. LUNGevity tries to match people based on age, gender, diagnosis and geographic location. It’s always felt very comfortable. I’ve had mentees assigned to me and we usually have a really good talk and maybe hear from them once or twice and that’s all they need at that time. We talk on an as needed basis. Hopefully, I’m encouraging people depending on where they are. A lot of the time, the person is newly diagnosed and it’s very fresh with them. As a mentor, you have to put yourself back in that frame of mind. It’s important to remember that you’re not there to fix their situation. You’re there to listen to what they need and let the conversation evolve. The most rewarding thing about being a volunteer is being able to help someone else by sharing my experiences and the ups and downs that I’ve had. If I give any advice it’s always to find a specialist who is an expert when it comes to your diagnosis type or mutation. It’s so important to be very confident in your medical team. Don’t be afraid to get a second opinion. If your doctor isn’t jiving with you, keep looking. It just feels good to help somebody through this because as we all say, it’s really hard for other people who haven’t gone through it to understand. When I was diagnosed, I was given 9-18 months. I’m coming up on 3 years and 11 months and my wife and I are going out to Los Angeles next month for the Stand Up for Cancer telecast on my 4th Cancerversary. I hope that my efforts as a LifeLine volunteer will inspire the people I mentor to do the same for others. I’m a big believer in paying it forward. It’s a big world and there are a lot of people affected by this disease.

Today, I happily paint two of my toes red, to celebrate two years of being a survivor. Some days I ask myself it has really only been 2 years because it feels like I got the diagnosis so long ago. Lots of scans and needles and chemo and radiation and....I'm still here! I woke up this morning, very cheerful, almost like I was celebrating a birthday. I realize that EVERY SINGLE DAY is a gift, whether we have lung cancer or not, but that cancer seems to make each day that much more important. While I was thinking about everything today, I was overcome with emotion. I know that I am blessed to have as much time as I've had. I think about the friends I've made in this "club" that are no longer here. For those friends, and for the rest of us, we continue to choose life.

“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.

Blog Entry is the Teamwork of both Michelle and Tom Gali: After receiving a lung cancer diagnosis, the last issue, one would expect is problems with health insurance. While it’s unusual to have a claim fully denied, delays that effect diagnostics or treatment are quite common. Here are my 10 tips for dealing with health insurance problems. 1. Get your companies Human Resources staff engaged. Find out who has responsibility for claim payment. If it’s the employer, then they are self-insured and typically have an insurance advocate to fight the battles on your behalf. Get them in the fight. If the health insurance company pays the claim, expect difficulty in authorization and payment. Read your policy about appeals. Every determination that denies or limits care can be appealed. For example, it’s possible to have a non-network provider paid at the in-network rates for a specialty physician. Be assertive, do not take the first “no”. Appeal, appeal and appeal again! 2. Realize each state has an office that regulates insurance. Find out their email address and provide copies of each claim to the office for “information and action as appropriate.” If you need them to act, they will have a ready record of your case on file. 3. Schedule a face to facemeeting with cancer provider’s financial team.Understand how they process insurance claim submittals. Who does what to whom and who is in charge. Get names, phone numbers and email addresses for key people in the claims department. Sometimes providers have a nurse who manages pre-certification requests. Get to know this nurse. Call or email this nurse first if insurance does not pre-approve a diagnostic or procedure. Insurance companies have definitive rules about receiving medical records. Sometimes the lack of a record becomes the log-jam. 4. Get to know the healthcare provider’s patient advocate.It’s important to establish a relationship with this office. They know how to work the health system bureaucracy. 5.Don’t accept “I’m waiting for a call back” as an answer.You will need to be assertive as the squeaky wheel gets the grease. Use a “five-why” response technique. Ask “why” the wait, then follow with another “why” question and another and so on. Provider or insurance company bureaucracy is their problem, not yours. You are paying for it to work efficiently. When it does not, they owe you and answer as to why not. 6. Do not sign any documents at the health system requesting foran “advance or estimated payment” until the insurance issues have been sorted out. Lung cancer treatment is expensive, you do not want to be on the financial hook for treatment that the insurance company is supposed to pay for as part of the benefit design. Sometimes there is a “step therapy” or pharmacy formulary requiring a treatment regimen be tried first. Step therapy can also be appealed through a “peer to peer” conversation with your doctor. 7. Create a log and document everything. When discussing your claim with an insurance company record everything. Record the claim number, date of service, date of claim, time of your telephone conversation and first and last name of each person you speak with. You may not actually be speaking to a member of the insurance company, but one of their “specialty care” vendors. It’s important to know who all the players are. Sometimes vendors do not follow the insurance company rules. 8. Ask the insurance company to assign a medical case manager. This is typically a nurse that can help navigate the health insurance system. Insurance companies often have free phone resources for cancer patients such as mental health counselors, dietitians and physical therapists. Find out what services are available since they are not typically advertised in benefit brochures. 9. Pay attention to your mail. You’ll soon receive a deluge of Explanation of Benefits (EOB) forms; they are all different and are confusing. Put someone in charge managing your EOBs. Create a log recording the date of treatment, the provider, the claim number, amount paid and amount denied. Read and understand the numeric codes explaining reasons for payment or denial. Sometimes, insurance will issue a “partial benefit” payment or apply financial penalties. This information is usually buried on the EOB. Do not pay any provider bills until the EOB has been received. Hospital billing errors are frequent. 10. Stay calm. Every problem has a solution. When discussing your problem and you get a techno-speak response, ask for a plain English explanation. Be ready to interrupt (it’s not rude if you don’t understand!) Save your energy for getting well.

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.

More like in my wallet. After worrying for the past 18 months about possibly losing my health insurance, I finally hit pay dirt - and it didn't hit back. I have received my Medicare card and after I "dissenroll" from my interim "Obama Care" within the next week or so, I will officially join the ranks of the millions who have insured their health - so to speak - with the Federal Government. No more will I ifs, ands, or buts about hospitals, doctors ("medical" actually) and prescription drugs (parts "A", "B" and "D" for those of you unfamiliar with the alphabet soup). Dental and vision coverage I'm not so sure about, but at present, I can live with the coverage that I know I have now because the worst case scenarios have been addressed. And as a former insurance broker, solving and/or protecting against worst case scenarios was always my main concern. To invoke "Speedy" from those long-ago Alka Seltzer commercials: "Plop, Plop, Fizz, Fizz. Oh, what a relief it is." And even though I'm not plopping or fizzing, I am effervescent nonetheless at my arrival. Reaching milestones (even destinations, sort of) is a way I've measured and evaluated my cancer experience. Not that I keep a chart or even a calendar with Xs marking the days but "I've looked at life from both sides now" (heck, I've looked at life from all sides now and in between, too) and my glass is still half full. I remain positive about my negative and despite having never having seen Joni Mitchell in concert (although I did have tickets to see her at Cole Field House in the 70s; once on stage, however, she realized she was too sick to perform and stage right she went. Occasionally, her songs have spoken to me. Right now, the United States Government is speaking to me in the form of a red, white, and blue card. They are telling me that I have made it to the promised land, a land whose existence was proposed in 1965 and which became law in 1966 fulfilling promises made to all Americans who reach age 65 that health insurance is their right and not because they were privileged. Nevertheless, I feel privileged to be "Medichere." For 10 years, 10 months and 20 days, dating back to late December 2008 when I first experienced the pain in my rib cage which precipitated my visit to the Emergency Room, I have been under the proverbial gun. Sometimes, it's been holstered. Other times, it's been locked and loaded. So far, no shots have been fired, even though occasionally I've been in very close range. I can't say for sure whether I thought I'd actually get here, but let's be realistic, we all had our doubts. But now it's time to gear up. A tremendous weight has been lifted from my shoulders. All I have to do now is live with the fact that I have stage IV, non-small cell lung cancer, an incurable disease if there ever was one. But here I am, alive and reasonably well. No more will I have to worry about who, what and where I'm going to be treated. From now on, I'm in charge (like Charles). As a result, I feel as if I've regained a little control of my life. And for a cancer patient originally diagnosed as "terminal," this control is an extraordinarily wonderful feeling. I wish I could bottle it like "Brighto:" "Brighto, Brighto, makes old bodies new. We'll sell a million bottles, woo, woo, woo, woo, woo, woo." (The Three Stooges in "Dizzy Doctors," 1937.) And that's just the kind of silly enthusiasm I'll need living forward. Hardly is the lung cancer I have on the run. I wouldn't even say I have it on the walk. A stagger, maybe. (Or maybe that's me who's staggering when I lose my balance because of the neuropathy in my feet.) Cancer is an adversary unlike any other. It's going to do what it does. I doubt Medicare is going to scare it into remission. Moreover, my not worrying about having health insurance anymore probably isn't going to have much effect on "the cancer" ("Forrest, Forrest Gump") either. The biggest effect will be on me, emotionally. I just hope that's enough. Because I'm going to need all the ammunition I can muster.

I know it’s happened to all of us at some point during our experience as caregivers: the “self-care” lecture. Eat a vegetable! Take a stroll! Get to the gym, even for fifteen minutes! Get a pedicure! And on, and on, and on… How do these conversations make you feel? I confess that they frustrated me immensely in the earliest days and weeks after my mom’s diagnosis. I was actively offended any time that someone had the audacity to suggest that anything was more important or more time-sensitive than navigating the maze of new information that we were tossed into. I just knew that anyone who could suggest I take time for frivolous activities was way out of touch with reality, and did not understand what I was up against. Worse: I had a feeling in my bones that they did not WANT to try and understand what I was up against. My family’s new normal was in conflict with the suggestor’s point of view on the world where everything was calm and copacetic and pedicures were still a possibility because there wasn’t too much else pressing. Long story short, my friends: I was a wreck anytime someone suggested I take care of myself first. Furious and righteously indignant. One of the most hurtful things I have ever taken to heart (perhaps unfairly, in retrospect) was an extended family member telling me to go get a manicure after I had texted her a photo of a cheap-but-cool new ring I had just bought while running errands. Her words cut me to the core. How dare she? After all, did she not know what was going on? Why did I deserve that amount of downtime, and how would I fit it in if I did, with all the stuff that needed doing? I was so close to saying “well, sure, if you want to fly here and relieve me for a couple hours!” Oh, hold on. Wait a minute. I just looked in a mirror. What’s this I see? I am STILL that person, still feeling those same feelings. They are hard to cast off, even four years after diagnosis, and even with our family somewhat regaining its sea legs and setting sail more confidently into the future than we did when lung cancer was new. I don’t feel this rage or umbrage as often anymore, especially since my parents themselves have been encouraging me to go and do and play and frolic, and I can honestly say I’ve had a few manicures since the “cruel” text. But, to this day, I definitely still build an immediate barrier between myself and any interloper who deigns to tell me to eat healthy and take more walks “because, after all, you can’t pour from an empty vessel.” (Ohhhh how the empty vessel analogy used to boil my blood!) I build the wall because something in my heart tells me that the person who would say those things does not understand me, my family, my parents’ illnesses, my priorities, my choices, or my daily schedule enough to be allowed to weigh in on what I do. Here’s my thinking: no adult is unaware of the need to eat more vegetables and take more strolls and get more sleep. Nobody in their right mind would deny that this is the ideal. But a serious diagnosis upsets every single ideal that a person and their loved ones have embraced and looked forward to. The anticipated and planned future of day to day or year to year fades away, and survival becomes moment to moment. Anyone who has been through it knows this intimately, and I can’t help but doubt the wisdom (not the good intentions, mind you, but the actual wisdom) of those who have not been through this minefield to understand the situation well enough to tell me to eat a vegetable and have it be sagely helpful to my needs. In fact, I recently told a good friend, a fellow caregiver, that “eat better and get more sleep” must have become society’s newest “bless you!,” because I’m hearing it given automatically after telling folks about my situation, just as automatically as they would bless me if I had sneezed. To put things more bluntly: anyone who has not experienced the particular choice of sacrifice for the sake of a loved one’s health/convenience/safety (etc) that a caregiver makes every day has no business telling me what to do, because they have no comprehension of the logistics of my day, and all that must fit inside it, and all the priorities that are NOT me or mine. Don’t get me wrong: I am not advocating for a lack of exercise, sleep, or vegetables. Do I even need to include that disclaimer? I don’t live under a rock and I wasn’t born last night. But that is precisely my point: we must appreciate the intelligence and common sense of caregivers enough to know that such vapid advice does not add information or value to the caregiver’s toolbox. Instead, we as caregivers must encourage more widespread awareness of our situations and all they entail and require, so that people who do have the desire and intention to help can contribute more meaningfully than by speaking platitudes. In other words: I frequently advise extended family and friends of cancer patients to refrain from instructing the caregiver, and to instead LEARN from the caregiver. Don’t tell a caregiver what to do. HELP the caregiver do what he needs to do. If you want him to have time to go fishing or get to the gym, then offer to cook a meal for his family. Better yet, just cook the meal and bring it over, without pressuring the afflicted family to socialize if they do not wish to. If you are trying to support a caregiver, and if you remember nothing else I say here, remember this: try and understand that checking things off the “to-do” list can often be the most satisfying “self-care” that there is. Don’t guilt me for not eating vegetables or not going to the coffee shop when that same thirty minutes could be used to do a chore that’s been bugging me for weeks. Please trust the person actually living in the situation to know what would de-stress the person the most. Do not insert your assumptions. In fact, feel free to ask how you can encourage the caregiver in completing that stressful task. Don’t automatically resort to the incentives system you might use with a child (“hey, let’s get ice cream if you finish that paperwork by noon!”), but ask the caregiver in a meaningful way what support structure he or she needs in order to knock it out (and, hey, it might just be ice cream—the point is to not assume, and not to place yourself in a position of authority). If you are a caregiver, and if you remember nothing else I say here, remember this: encourage those in your life (who honestly want to help) to think of a concrete skill they have or task they could fit into their own busy schedules, and offer them the advice that it would be lovely if they could use that favor as testament to their sincere intent to contribute to the team. Demonstrate that this is the way you could be given the extra thirty minutes in your day for rejuvenation. Empower and enfranchise yourself, caregiver friends: there truly are gems among your networks who want to assist you, but they’ve been given bad information by multiple sources and industries, so they don’t know any better when they suggest that extra piece of broccoli. Nobody is an expert in your situation except you. Nobody is an expert in your loved one’s experience except your loved one. You two should be the instructors, and everyone else in your circles should be the instructed. If I had thought of that earlier, it may have saved me months of anguish and isolation when dealing with friends and extended family members, because I would have broken my assumption that they did not care to “get” it, and I would have filled my toolbox with helpful resources (in the form of helping hands) much more quickly than I did. Come to think of it, I also should have divorced myself long ago from the notion that someone must fully understand my situation before helping me, but that’s a story for another time.

Most days, the cancer is buried somewhere in my thoughts, my work, my hobbies - not at the surface. But there are days when it hits me right between the eyes. Cancer. How the hell did I get here? Is this really my life? Wondering if anyone else has experienced this.

In 2013 started with pneumonia but wasn't getting over it, Dr. wouldn't give up something just not right he kept saying. Sent me to a pulmonary specialist who found a spot on my right lung. Immediately set up oncologist, surgeon & hospital within 7 days I was laying in the recovery room with minus -one lung. Come through with flying colors, home within 3 days, thought to myself piece of cake! Yeah wrong answer, started chemo 3 weeks later and within 24 hrs I was back in hospital dehydrated & sicker than a dog! Not going to sugarcoat it the next 4 months was hell! After that I refused radiation, oncologist wasn't happy, I didn't care. As of October 20 it has been 5 years & I was stage III B so don't believe the statistics, just never give up! and fight!

Happy Monday, my friends! (Yeah, I know, it’s weird, I said “Happy” Monday…it’s not necessarily an oxymoron…hear me out!) I was always the kid who enjoyed the first day of school. How about you? The first day of vacation was pretty great, too! There is great power in “firsts.” We are almost supernaturally (or superstitiously!) drawn to the gravitas of beginnings. I remember very clearly making a circle of hands around my mother when she began her first treatment: my dad, some close friends, the nurses at the infusion center. Some of us prayed, some of us stood silent, some of us spoke whispered encouragement. I’ve heard similar memories from many patients and caregivers. No matter the words on our lips or in our minds, the sentiment is the same: there is great awe when we begin an experience, a journey, a season. I’ve always thought that part of the particular joy unique to a beginning is the ability to cast off any detritus from the previous experience, journey, or season. If there is baggage or fear or angst (or anything else unpleasant) that is keeping us from advancing into the new moment, the changing chapter gives us permission to leave behind whatever we do not need—whatever will not service us as we move forward. In that way, a beginning is also a chance to reset. A couple of careers ago, I was a professional actor. I still do the occasional play, when the schedule is calm, and I recently closed a show with my small community theatre group. During rehearsals, when there is a problem in a scene, or a snag in a set change, there is always one perfect solution: we reset. “Reset” is shoptalk for going back to zero: we literally re-set the scene (actors AND scenery), start the scene over, fix the issue, and then move on with renewed confidence. Like a bone that breaks and heals stronger at the point of fracture, a scene that has been reset usually turns out much better and smoother than it was before. So, I’ve been thinking lately about the significance of beginnings and resets. That brings me back to Mondays… Mondays are the calendar’s “firsts.” For many of us, it’s the first workday after a (too-short) break. For others, it’s the first schoolday of the week. For most of us, it’s the first day we can expect business-hours productivity after the hectic rush that is (usually) Friday afternoon. And, for all of us, it’s the loop-point of the week. It’s the marker of how we count weeks backward or forward, between commitments and appointments. So, it’s a built-in reset. It’s a page-turner. It’s a blank slate. It’s a chance to start over: whatever didn’t get finished on Friday didn’t destroy us, and whatever has to get finished this week hasn’t yet come due. For those reasons, I love Mondays. They’ve become my mini-reset. From Sunday night into Monday morning (I’m an incurable night owl; I’m too old now to deny it!), I find poignant peace in the tiny resets I can enact around the house. I help Monday arrive with its blank slate by creating all the blank slates I can think of: leveling off the laundry pile, clearing the kitchen counter, emptying the sink, running the dishwasher, taking out the trash, refilling toilet paper rolls, cleaning cat boxes, loading drink cans into the fridge… You get the picture. I cannot emphasize enough how precious that time has become to me in the years I’ve been helping my parents. I now look forward to Sunday evening, which, in itself, is life-changing. Instead of fearing Monday morning’s potential onslaught of “stuff” to deal with, I try and push last week’s dirt into the bin (or under the rug, ha!) and set the stage for the week on my own terms. I don’t know why waking up to a sink full of Friday’s dishes on Monday morning is so soul-crushing (knowing the "why" is above my pay-grade), but it IS. It just is. At some point along the way, I learned this: I learned that the sink full of dishes represented everything that did not get “checked off” last week, and that it now stood between me and everything I needed to accomplish THIS week. This was one of the most satisfying epiphanies I ever had, my friends, because the problem was so easy to fix. We can’t change our circumstances, and that alone is the source of most of our stress as caregivers. There is so much about our current situations that we would change if we had the chance, but since we can’t, we need to channel that desire for control into the mountains we CAN climb. And that laundry pile over there is just the right mountain.

I am not a statistics wizard; an engineer, I value the predictive power of statistics. Indeed, if one can precisely control variables, a statistics-based prediction of the future is remarkably accurate. The joy of predicting end strength for a new carbon-nanotube concrete mix design melts the heart of this engineer. But, concrete is a thing with but 4 variables to control. Human beings have perhaps millions of variables, thus predictions about people are vastly more complicated and inaccurate. Statistically-based predictive power has a foreboding downside. The methodology is used by the medical profession to forecast life after diagnosis with late-stage lung cancer. Unfortunately, I have first-hand experience once predicted with but 6 months of remaining life nearly 13 years ago! My doom was forecasted with high statistical confidence and for a while, I believed it. In the dwell time between treatments, I searched for methods used to generate my projection of demise. Each patient’s type, stage, age, ethnicity, race, and date of diagnosis are reported to the National Cancer Institute on diagnosis. Deaths are also reported but not the cause of death. Nothing is captured on complicating health problems like cardio-pulmonary disease, diabetes, or other life-threatening maladies. The predictive data set appeared slim and uncontrolled. My doom and resulting gloom waned while mindlessly searching web pages for statistical good news. Ammunition in the form of a powerful essay by the noted Harvard biologist Stephen Jay Gould – “The Median Isn’t The Message” – contained: “…leads us to view statistical measures of central tendency [median or mean] wrongly, indeed opposite to the appropriate interpretation in our actual world of variation, shadings, and continua.” This meant the statistician seeks to combine data and express it as a median or mean to predict or explain. I’d forgotten that I was one inaccurate variable in a “world of variation.” One data point used to calculate a central tendency of survival for about 1.4 million Americans diagnosed in 2004. I might be the one holding the right-shifted curve from intersection with the axis of doom. Gould survived 20-years beyond his late-stage, nearly always fatal, abdominal mesothelioma cancer diagnosis. Ironically, he passed after contracting another form of unrelated cancer. A distinguished scientist, Gould eloquently described the limits of science and statistics by suggesting that “a sanguine personality” might be the best prescription for success against cancer. There is always hope, with high confidence. Listen to his essay here. Stay the course. ____________ Get your copy of Scanziety here https://www.amazon.com/Scanziety-Retrospection-Lung-Cancer-Survivor-ebook/dp/B01JMTX0LU

I've said it before and I'll say it again: cancer can be as hard, if not harder, on the loved ones than the patients. Our family is very close - I don't have any siblings and my husband and I don't have children. Our family unit is small. After 2.5 years, my husband and I have a process. He goes with me to all of my scan result appointments. As soon as Super Doc gives us the results, Neal steps out and texts or calls my parents with the updates. I always want to be with them if we have to give them bad news. My parents live 4 hours away; otherwise, I think they'd crowd into the exam room with us. Although we had to give them bad news a couple of weeks ago, we actually had something in our favor. A lifelong friend of mine was visiting with them on the way to take her daughter to tour a college. She was able to keep my parents somewhat balanced this time. I'd been preparing them for the results - figured this was coming. But no one wants to have to call their parents and tell them the cancer is back. Stupid cancer.

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.

Summer has ended and baseball is in World Series mode. I’m a long suffering Philadelphia Phillies fan — a Phanatic! To have a lifelong fascination with a mediocre baseball club requires supreme dedication, unusual perseverance, and a strong conviction that tomorrow will be a far better day. These attributes are prerequisites for facing a daunting lung cancer diagnosis and enduring the arduousness of treatment. Danny Ozark, once manager of the Phillies, took the team from perennial cellar dwellers to contenders. He explained his formula for success thusly: “Half this game is ninety percent mental!” Dismissing the missing half, the same can be said of life after lung cancer treatment. Presume diagnostic and treatment routines of lung cancer are largely similar; the unique and difficult challenges occur post treatment. Adding Ozark’s missing half, coping with post treatment life challenge "is ninety percent mental.” Individually, each will face a distinct challenge set but universally, life will be different than life before treatment. How so? First was a misplaced expectation to return to pre-diagnostic life. After NED, there were so many things I could no longer do. It took a while to realize I needed to carve out a new lifestyle. There is a new normal life after lung cancer, but the mental challenge is finding it. No one gives you new normal; you have to make it. Several side effects became chronic conditions. Coping becomes a mental challenge. Everyday, I play a round of mind over matter. Most days my mind wins but I have to live with losing days. Too many in a row and I need help. Fortunately, my wife is a godsend. Plan to have someone trusted close by. I’ve learned to go well out of my way to avoid confrontation. There are no “civil” discussion these days. There is disagreement, branding, insult and anger. My spin cycle goes one step farther to pain. If I walk away, I may have a good day. I won’t if I don’t. I’ve learned to control how I feel about something and not caring enough to have an opinion works well indeed. My new normal life is both challenging and enjoyable. Achieving that state involves application of Danny Ozark’s recipe for baseball success — new normal life “is ninety percent mental.” Stay the course.

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.

In March of this year I was diagnosed with stage IV NSCLC, Adenocarcinoma, as the result of a case of pneumonia. Already under the care of a Medical Oncologist as the result of having been treated for another type of cancer the previous year. That treatment went well, NED. On my first consultation he explained the standard treatment options for stage IV. What I was hearing ( and said to him), was, "So the bottom line is I'm dead." I have to admit that I taped the consult and was a bit ashamed of myself when I listened later. I actually like my Med. Oncologist but was very aggressive. Finally, he said, "Okay, you're young ( not really), and healthy and respond well to treatment, so let's go for a cure." He had done a study with some other doctors on treating Oligometestatic lung cancer with a curative intent. Oligometestatic means, in my case, that I had a nodule in my left lung and 2 in my right lung, but P.E.T. showed no spread outside my lungs. C.T.'s done since then still do not. Talked with my family and we decided within 24 hours to go with his plan. His plan was to give me S.B.R.T radiation on all 3 tumors followed by chemo. Then hit a snag with Radiology Oncologist. He didn't want to do rhis. His concerns were that it wasn't standard of care ( it has since come into standard of care) and that I'd had 33 standard radiation treatments to my right breast the year before, so he was considering possible toxicity issues. I persisted, my Med. Oncologist persisted, and by God's grave a new doctor had just come on board at my hospital about the time I was diagnosed with extensive experience in S.B.R.T. So, I got my treatment. I had 5 fractions of 1000-1500 centigrays of radiation for a total of 4500-5000 centigrays over a 2 1/2 week period. It was done twice a week. Normally S.B.R.T. is done daily or every other day. I'm thinking my Rad. Oncologist chose to do it this way because of his concern about toxicity. The physicist assured me when I ask that the fractions were too high for the cancer to develop resistance in that length of time. They treated all 3 tumors each time. This took about 1 1/2 hours and I was required to lay totally still the entire time. That was the only difficult part. Had no adverse reactions to the radiation at the time and have not had any to date. Next scheduled for 4 chemo treatments of Cisplatin/Alimta spaced 3 weeks apart. Am one week out from my second treatment. Can't say I've had no side effects from this. You guys know exactly what I mean. Lol. The only scans I've had were brain M.R.I. and 2 abdomen/pelvic C.T.'s since diagnosis. Both were clear. Med. Oncologist plans to scan lungs at the end of chemo as of now. So we will see what we will see. Hoping this works out for me and will also help someone else down the road. Many thanks to Tom Galli for suggesting I do this blog, all his support, and hanging in there with me until I could figure out how to get it done. Judy M.

Today we celebrate 13 years of surviving NSCLC. I'm borrowing three toes from Martha, my wife and caregiver extraordinaire, who deserves most of the credit for my continued life. Martha did the heavy lifting during treatment, asking the right questions at the right time, and prodding my medical team with just the right touch. By comparison, I was at wit's end during my nearly 4 years of continuous treatment. Doctors McK (GP), H (Oncologist) and C (Thoracic Surgeon) also deserve a lion's share of credit. Collectively, they share a trait that distinguishes them from the rest of medical community -- they treat people, not patients. The red toenail painting tradition was started by a Dr. Phillip Berman, radiologist and never smoker, who was diagnosed with Stage IV NSCLC. In an early Internet cancer website he founded, RedToeNail.org, he vowed to paint a toenail red for each year he survived what he called "this nastiness." He painted 5 before passing but taught me a great deal about living with lung cancer. During treatment, he was playing with his children, exercising, interacting with friends, and finding something to enjoy every day. In other words, he embraced the life he had and lived every day reveling in the joy he discovered. His lesson -- those who choose treatment choose life and the important thing is to do something with the life you have. I pass his powerfully evocative message to you. If you suffer with lung cancer then resolve to live every day and find something to enjoy. Realize that if I can live, so can you. Paint your toenails red! Stay the course. Tom

We often hear smoking gun used to describe the “ah ha” moment of a who done it. I was unsure of the meaning and asked Siri. My Apple genius defined it as “as piece of incontrovertible incriminating evidence.” I know two things with high confidence: (i) there is a very strong correlation between smoking and lung cancer, and (ii) implying smoking as a cause adds to the self-induced stigma that smacks down research for my disease. So, how do we address the stigma without pointing the smoking gun? I couldn’t stop because I was addicted to nicotine. When I was young and fearless, almost everyone smoked and I joined the crowd. In my 30’s, most quit. I tried, many times and ways, but couldn’t. My addiction was stronger than will power. Addiction is irrational. Most addicts recognize the harm, but recognition caves in the face of physical craving. How is addiction to nicotine different from alcohol, heroin, or cocaine? It isn’t but what do the health authorities call it? The Center for Disease Control (CDC) says smoking caused 480,000 deaths last year in the United States. Note absence of the word addiction. The CDC also says about 88,000 people die annually from alcohol abuse. Note abuse is not addiction. Almost 35,000 people died from heroin overdose in 2015, according to the National Institute of Health. Note again, overdose is not addiction. It is unreasonable to suggest these deaths resulted from one time or occasional use. I contend not using addiction to characterize the root cause is part of the problem. If I smoke, abuse or overdose, I am branded guilty of doing something wrong. I am causing the problem. There is no disease or medical abnormality; therefore, there is nothing to research. This individual guilt becomes a collective stigma. If our national health authority doesn’t treat use as addictive, it certainly won’t be prone to find new treatments. Nor, will there be interest in treating consequences. Thus, the paltry research funding for lung cancer. Many people experiment with addictive drugs and are fortunate to stop short of addiction. But, when one can’t stop, one is addicted and mechanisms must be found to treat the addiction. So, let’s change the nomenclature. I am addicted to nicotine and my addiction likely caused lung cancer. Where is the smoking gun pointed now? Stay the course.

Now, long after the commotion of active treatment, my wife and I often share recollections. Martha is my caregiver and for more than 3 years of near constant therapy she held the long thin line. In doing so, she had to confront my anxiety, discomfort and fear. These were variable; the constant foe was my general irascibility towards medical treatment. Now a 12-year survivor, we both laugh at some of my antics. But during treatment, there was high drama to deal with. It is not easy to watch someone you love encumbered by all manner of tubes and wires in intensive care. Nor is it pleasant to attend to the full-throttle roar of chemo-induced side effects. Moreover, there is recognition that the side effect bedlam will occur with the same progression and intensity a short time in the future. Add to that the burden of failed treatments and the inability to influence outcomes. These are the plight of the caregiver. While in the throes of treatment, most appreciated were the little things Martha did for me. Discharged from hospital with a chest tube in my lower back, scratching my back was a godsend. I was beset with “taxol toes” and rubbing my feet with Aspercreme provided immense temporary relief. But most appreciated was her homemade chocolate mint chip ice cream. This was an effective counter to a waning appetite, enormous attitude boost, and a relished wonderful concoction. There is a fundamental reality about treatment recollection: the patient and caregiver have vastly different memories of the same event. I find it useful to accept Martha’s version as a higher order truth for two reasons. She was an observer and not under duress, and I was normally at wits end totally undone by the experience. This difference in perspective points to the essential role of the lung cancer caregiver—a steady hand in a sea of turmoil. Stay the course.