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Tom Galli

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Blog Entries posted by Tom Galli

  1. Tom Galli

    Ring That Bell

    By Tom Galli,

    There are advantages to receiving lung cancer treatments in small clinical settings.  Among them is everyone knows your name and treatment circumstances.  Scheduled for a CT scan with contrast yesterday, when I checked in I was routed to the infusion area to have my IV device installed.  Chris, the radiology technician who’s been scanning me for almost 14 years, is well aware of the difficulty of installing an IV.  So he passes me to the infusion nurses who yesterday managed to capture a vein, first try!
    But, the infusion area was packed and so I had my device installed in proximity to the treatment complete celebration bell.  In my day, the occasion was not a big celebratory photo op.  One would ring the bell softly because many were asleep during infusion.  Consequently, I never got a photo.  Yesterday’s photo will be added to my archives.  It is shared with you because it took three rings to find life. Lung cancer is persistent.  Treatment is often a marathon but one that can be won!
    Stay the course.

  2. Tom Galli

    The Stigma

    By Tom Galli,


    Stay The Course Blog
    "You have lung cancer. You don't belong here. You gave the disease to yourself!" Those words represent an admonishment bordering on scorn that greeted my first and only in-person cancer support group session. It was fortunately small, populated by ladies, all who had breast cancer. 
    I smoked; my entire family smoked. I also served as a career US Army officer. I spent months breathing oil fire smoke during the First Gulf War; have instant olfactory recognition of "burn barrel smoke" so prevalent in Army encampments; and lived 9 years in places with high radon gas concentration. I am the only one in my family with lung cancer. Might environmental exposure be my cause?
    We are entangled in a culture of blame. Devastation is not bad enough; we are compelled to make it worse by blaming. Then we shame! We do it over and over. To what end? What is solved? Here is one very sad casualty. Many who join our Forum these days are never smokers. Yet they are instantly branded by The Stigma! It starts early. Almost the first question asked by their medical team is: did you smoke? How does the answer change treatment or outcomes?
    There is another causality. Blame is a blocker to low-dose CT screening participation, particularly in the US veteran community. Who, after honorable service, wants to submit to a CT scan when the outcome leads to scorn? The chance of doing nothing appears preferable to the limelight of diagnosis.
    Even language used to characterize scan eligibility is blame-tinged. Who wants to admit to being a “20-pack year” smoker? No wonder less than 10% of the eligible population actually agree to a low dose scan. One must sign a piece of paper certifying smoking history, and that dresses the stage for blame and shame!
    We need to be done with this!
    Stay the course.
  3. Tom Galli
    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.
  4. Tom Galli

    Eighteen Years but No Toes

    By Tom Galli,


    Stay The Course Blog
    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
  5. Tom Galli

    Predicting Doom

    By Tom Galli,

    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 
  6. Tom Galli

    Voyage of Hope

    By Tom Galli,

    I am writing this from the pool deck of a cruise ship while on a transatlantic sojourn. Our fourth transatlantic and our favorite form of vacation, we cross then pick several countries and explore. This year, after docking at Barcelona, we fly to Ireland and tour the wild and unpopulated western coast, then spend a long weekend in Edinburgh, and fly home. The cruise and the touring after is wonderful. The flight back is a nightmare because my incision scars throb in pain in a pressurized aircraft. We need to make the return flight in two legs (overnighting in Boston) to recover from the pain. 
    The national hope summit concluded, and missed for the second time because of our annual spring migrations, I tell you about our cruise as two examples of hope.
    First, we undergo treatment and endure discomfort for a reason -- extended life. It is important to shelve the treatment and uncertainty mantle to do something enjoyable with this life extension. We enjoy these long (and reasonably priced) repositioning journeys on a cruise ship.  We step out of the mundane and into the lap of luxury and enjoy interactions with the international assortment of passengers we sail with. 
    Second, to the essence of hope, if I can survive to do this, so can you.  
    I will never go back to my lifestyle before lung cancer. But, I can have an enjoyable and meaningful life after lung cancer. And, my attitude dictates the amount of joy and meaning experienced. It is so important to realize this point. We endure treatments for a reason. Find your reason. Revel in your new normal. 
    Life indeed is what you make it. Make yours. 
    Stay the course. 
    Tom
  7. Tom Galli
    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.
  8. Tom Galli
    I like thinking about choice.  It is an interesting concept and can involve logical, rational thinking and irrational and illogical thought — sometimes concurrently.  Choice is not just a human phenomena.  Animals make choices, some deliberate and some random. But when all is said and done, a choice is a decision that has an outcome (or consequence).  When we make rational choices, we are said to be informed of the consequences. Irrational choices are those where consequences don’t matter.
    To digress for just a moment, consider the age-old saying involving cake.  It is generally cast as a statement of choice that resolves to a consequence: if you eat your cake, you can’t have it. Think about the statement for a moment.  If I truly want to possess a cake, I can’t eat it.  Both are desirable: having a cake is nice, eating it is better.  But, the consequence of eating involves the loss of cake and, for example, a further consequence if one planned to use the cake to celebrate a child’s birthday. Most would characterize eating this presentation cake as irrational. Disappointment is the consequence and it is known and understood before making the choice to eat.  
    Let’s extend our thought experiment to a choice between lung cancer treatment and continued smoking. Surgery, radiation and chemotherapy all irritate the lung, and presume the smoker realizes that tobacco smoke (indeed any smoke) is also a lung irritant.  Choosing smoking under these circumstances is irrational. The known consequences range from healing problems, surgical failure, and premature reoccurrence. Yet these don’t seem matter. The impact of consequences will also disappoint the treatment team and family who are praying and hoping for success.
    There are many choices in lung cancer, all with consequences.  Not choosing treatment because disease is at an advanced stage is rational. Implicit is the forbearance of side effects with little prospect of success but yielding a higher quality of end-time life.  But when one chooses treatment, one is choosing life extension.  Choosing also to continue smoking while undergoing treatment is not rational and puts at risk the opportunity for extended life.  Let’s make rational behavior choices and avoid undesirable and disappointing consequences.  Chose either to have your cake or eat it.
    Stay the course.
  9. Tom Galli
    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 
  10. Tom Galli
    Just reported is a Memorial Sloan Kettering Cancer Center and Cornell University study showing but 5% of terminally ill cancer patients understand the gravity of their disease and prognosis. Moreover, only 23 percent of these had a discussion about life expectancy with their doctor.
    At first pass, I questioned the validity of the percentages.  They were so low they bordered on unbelievable. This had to be mainstream press sensationalism at work! Then I spoke with an expert, and she convinced me I was not a typical lung cancer patient. The fact that I read about my disease after diagnosis was a big tell. Many do not.
    My education about lung cancer started the first night of my diagnostic hospital stay. The lesson delivered ⎯ a very pragmatic and frank discussion with my general practitioner. His words characterizing my prognosis were "slim odds." He didn't want me to give up but wanted to ensure I knew the enemy.
    After discharge from my diagnosis hospital admission, I burned up the Google Search Engine reading everything I could about lung cancer. In 2004 there were not a lot of sources, but there were enough to scare the living daylights out of me.  Research revealed a very low probability of living 5 years even with effective treatment. My bravery evaporated.
    My wife recalls that time. She reminded that my inquisitive nature departed with bravery. Martha asked questions. These explored diagnosis, treatment possibilities, and prognosis. I mostly stared at the clock in the consultation room. Or tried to change the subject.
    My oncologist was frank. He said even with successful surgery, I had high odds of reoccurrence. When tumors appeared after pneumonectomy, he was down to chemotherapy to combat my lung cancer. Chemotherapy would buy time but it wouldn’t eradicate. Time purchased allowed for CyberKnife technology to emerge that was a surer kill. But treatment opportunities were explored because Martha was persistent. After a year of surgical mayhem and two years of Taxol Carboplatin hardened with Tarceva, I was barely along for the ride.
    Sure, I knew my prognosis and life expectancy probability but knowledge did not empower me; it empowered Martha. So maybe the study numbers are low because patients understand their dire straits. Maybe we know and are afraid to talk about it.
    In case you are wondering, lung cancer is deadly. Mostly because it displays few symptoms and is often diagnosed at late stage. The treatment tool kit for late stage lung cancer is largely empty. Why? Now that is a good question; one deserving of academic study. I’ll start.
    Let’s hypothesize that lung cancer is a self-induced disease ⎯ people give it to themselves. If this is true, why should society invest in new diagnostic or curative means? As a logical extension of the hypothesis, society should never invest in curing maladies that are self-induced. How is taxpayer funded research for HIV/AIDS by the National Institute of Health to the tune of $3 billion a year explained? It is self-induced. Some will assert that a proportion of HIV/AIDS patients get the affliction accidentally. Yes, and some proportion of lung cancer patients are never smokers. But, drug abuse is completely self-induced and it garners just over $1 billion in yearly research. In the same data year, lung cancer was allocated but $225 million. No research for self-induced hypothesis fails.
    Let’s construct another hypothesis: society funds diagnostic and curative research for diseases that kill the most people. Seems reasonable. Scarce resources ought to flow to afflictions that take the most lives. Let’s examine the data. In 2012, HIV/AIDS claimed 12,963 deaths according to the Center for Disease Control (CDC). In that same year, lung cancer killed 157,425!
    Drug abuse is now anointed our national pandemic. Indeed prescription opioid overdose is “raging through the country.” CDC drug overdose deaths amounted to 38,538 in 2014 but in that year lung cancer deaths were 158,080. Lung cancer is our pandemic. It has been for a long time. The more-deaths-the-more-funding hypothesis is toast!
    Frankly, I’m getting tired of the medical research community squandering precious dollars studying what cancer patients think, feel, or understand. What is far more relevant is how to find, fix, and finish lung cancer.
    Stay the course.
  11. Tom Galli

    A Day of Thanks

    By Tom Galli,


    Stay The Course Blog
    It is a beautiful Thanksgiving Day in Texas. Amid COVID mayhem we are suffering, Mother Nature decided to intervene and give us this gorgeous day to remind me about the important things in life.
    I've been blessed in so many ways since my surprise lung cancer diagnosis in February 2004. I married the love of my life, walked my daughter down the aisle, experience the birth of my granddaughter, enjoyed glorious vacations, and perhaps most important found meaning and purpose for life after lung cancer. What is this meaning? 
    I've learned that yesterday is irrelevant, tomorrow is unimportant, only today matters. I can truly have a new life with each new day. Life is finding joy, and then relishing the moment. When I find my little piece of joy, I celebrate. I stitch together joyful moments as memories. I write about them. When life gets difficult, I review my joyful record. I am uplifted and fulfilled.
    Today I give thanks for the thousands of survivors on this Forum who teach me about life after lung cancer. The accumulated wisdom is an instruction manual for life. The most fundamental instruction: live in the day, find joy, and then celebrate. The montage shares a tiny fraction of joyful moments in nearly 17 years of life after lung cancer.
    Stay the course.
    Tom

  12. Tom Galli

    A New Chapter

    By Tom Galli,


    Stay The Course Blog
    Perhaps you've noticed. My activity on this treasured Forum has declined. Folks have inquired. I've been hesitant to respond; perhaps my faith and hope that things might be different caused a lack of candor. I'm nearing 20 years of surviving Stage IIIB diagnosed, Stage IV progressed squamous cell non-small cell lung cancer. Longevity after diagnosis in my day is a miracle. Thankfully it is much more commonplace today.
    No, I don't have a lung cancer recurrence. I'm cancer-free as far as I know. My annual oncology consult with low-dose CT is in September but I'm not concerned. My daily trial is pain. I've had chronic pain from taxol (burning toes sometimes called taxol toes) and a constant throbbing at my open thoracotomy incision site. Eighteen taxol infusions have left their mark; three open thoracotomies in the span of 7 months are the painful surgical side effects. Now nearing 73 years of life, 2 Army injuries have joined my parade: herniated disks in my neck and lower back. Moreover, muscle cramping, another taxol-induced problem causing low magnesium in my bloodstream, is worsening. I'm not sleeping, at least not having restful sleep. And yes, my physicians have tried every sleep remedy. My GP is still trying.
    In a recent consult with my GP, he advised that I not seek surgical care for my herniated disks. He is concerned about my pulmonary insufficiency, and I'm waiting for my pulmonologist's view. Of course, the orthopedic surgeon counsels little risk. But surgeons are surgeons. My neck and back may be correctable, but I might not survive the surgery. My GP also wants me to ask the pulmonologist about O2, 24/7. I'm currently using O2 at night (attempting to sleep), but 24/7 tethered to a leash would be a new chapter in my life. 
    I check the Forum every day and thankfully we have a team of folks who welcome and provide meaningful suggestions and support. I'll be in the wings cheering all on from the sideline. As always...
    Stay the course.
    Tom
     
  13. Tom Galli
    I'm writing this from a Florida Hospital radiation clinic waiting room. My daughter is having intensity modulated radiation therapy (IMRT) to treat her meningioma residual left over from surgery 3 months ago. This was her second brain surgery and in between was the birth of my granddaughter. Ironically, our greatest joy was sandwiched between our greatest fear. 
    She'll have at least 30 fractional sessions. I'm here doing grandfather and father stuff, the former fun, the latter hard as nails. 
    There are substantial risks. The tumor residual is lodged around her eye socket and the impact to her vision is of vast concern. We've talked about it. Mostly we try and forget. Daughter feeds back my mantra of only worrying about things that can be controlled but it doesn't ease my concern. Too much experience in this radiation domain to not worry. I find myself undone by uncertainty, again!
    Yesterday's clinical visit experience was my first in a long time. Things haven't changed. Quiet people waiting for their time with "the beast", families talking in hushed tones, most have lost hair indicating combination therapy. One change: the radio oncologist came out to greet my daughter. He supervised the fitting of the facial fixture and stayed through the entire dose application. That was unique in my experience and immensely comforting. Maybe the cancer community is learning to treat people not patients. 
    Passing on parental knowledge and experience is expected but not on this subject matter. We need to fry this tumor, but the potential vision side-effects are disconcerting. We've got one chance, twenty-nine radiation bullets left, and then scanziety and hope. Tumor is a word I need to discard from my vocabulary. 
    We will stay the course.
  14. Tom Galli
    Start with any whole positive number. If it is even, divide it by 2; if odd, multiply by 3 and add 1. After a string of calculations applying the even-odd method, regardless of the starting number, the answer will always be 1.  Well maybe because all numbers have not yet been checked. But up to 10 raised to the fourteenth power have been. And that is a very big number! This mathematical oddity is called the Collatz Conjecture. 
    For example, here is the calculation string applying the even-odd formula starting with 5: 16, 8, 4, 2, 1. (This is a great challenge for children BTW, especially if you require mental calculation.) Try a number. Don't try 33 or you will be up all night calculating till you reach 1, but you'll get there. 
    Why is it called a conjecture? The word is defined as a hypothesis that has been formed by speculating, usually with little hard evidence. I'm sure Collatz tried thousands of calculations before publishing his conjecture unlike the lady who questioned me about the origins of my lung cancer. 
    People are inquisitive. When I slip off my tee-shirt to enter the pool, people can't help but notice my "battle-scarred" chest. I've a distinctive banana-shaped scar along my back and missing ribs and a noticeable lack of a right pectoral muscle in addition to many suture scars front and back. I could easily claim a battle wound but tell the truth. When I did, my inquisitor said: "smoker right?" 
    This is the Lung Cancer Conjecture -- pure speculation. In my case, it is likely true but think of the never smoker encountering the same conjecture, then suffering the disdainful scorn of disapproval normally reserved for a badly misbehaving child. 
    It is of little value to take these people on. They have small minds that are already made up. It is however required we attack the attitude of deserving to die because we contracted a disease that settled opinion holds as self-inflicted. HIV/AIDS is largely self-induced and the ill are treated as heroes, reaping a bonus-budget of 10-percent of all NIH research dollars. This malicious Lung Cancer Conjecture must be contested if we hope to increase research funding from minuscule to meaningful. 
    The number 1 is the likely answer to Collatz's Conjecture. One also signifies a single entity, a whole person, a human being who contracted lung cancer. Does the reason really matter?  
    Stay the course. 
     
     
     
     
     
  15. Tom Galli

    Hospice For Sale

    By Tom Galli,


    Stay The Course Blog
    I’ve been raging against scam cancer cures for almost 2 decades. Now I learn there is an expanding for-profit hospice industry that is transforming hospice care into a world of fraud and incompetent “care”.
    Please read this November 28, 2022 expose in The New Yorker Magazine titled For-Profit Hustle.
    This forum exists to provide information and comfort to those diagnosed with lung cancer. When facing slim odds at the end of my treatment rope, I was comforted knowing a reputable and caring hospice provider would ease my end-of-life struggles. That was nearly 20 years ago. Things have dramatically changed, and this change is frightening!
    Here are excerpts from the expose.
    Hospice care is sold as alternative medical care. For profit hospice providers bribe physicians to bring new patients. Social media is mined to identify and enroll phantom patients. You might be surprised to find yourself enrolled in hospice! False Claims Act settlements resemble a protection racket: hospice executives keep their jobs, companies keep billing Medicare, whistle-blowers and their lawyers get a cut, and Justin Department attorneys cash in by moving to defend companies they once prosecuted. Hospice fraud trial judges are on the take! Turnkey-ready hospice business in Montana, Texas and Tennessee are on sale, now! How do we know a for-profit hospice provider is legitimate? After reading this expose, I don’t. Be very, very careful investigating a hospice provider. Find out who is the medical director. Ask every member of your medical team if they know the hospice provider and medical director. Ask if there are complaints. Run away from someone selling hospice care.
    Be careful out there!
    Stay the course.
  16. Tom Galli
    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.
  17. Tom Galli

    Scanziety

    By Tom Galli,

    Amazon Kindle Royalties Donated to LUNGevity.org During November:"I am not a doctor; indeed, I possess little medical knowledge.  I am, however, a very experienced and long-tenured lung cancer patient.  That gives me a unique perspective on the disease that kills more people­­—many times more—than any other type of cancer.  I do not intend to fill this story with statistics.  They are readily available from any number of reputable resources.  I have a firm belief, however, that lung cancer research is poorly funded because lung cancer is considered a self-induced disease. 
    We speak of those who suffer from or succumb to cancer as having engaged in battle; but in battle, one can choose to retreat.  When diagnosed with cancer, the only choices are treatment or death.  Statistically for lung cancer patients, the battle for life through treatment more often than not is lost.
    Treatment borders on barbaric torture that is endured repetitively, with uncertain outcomes and with death looming closely.  I claim no medals for bravery.  I was, and still am to some degree, overwhelmed by fear.  While in active chemotherapy, the time between a diagnostic scan and results was a nightmare to endure; thus, my name for this experience: Scanziety.  Several times, my treatment nearly killed me.  I survived, not knowing how or why.  My survival provides hope for those who suffer, particularly for the 230,000 Americans who will receive a lung cancer diagnosis this year.  If I can survive, so can you."
    Stay the course.
    Get your copy of Scanziety here https://www.amazon.com/Scanziety-Retrospection-Lung-Cancer-Survivor-ebook/dp/B01JMTX0LU 
  18. Tom Galli

    On Memorial Day

    By Tom Galli,


    Stay The Course Blog
    Could this be the day in America whose meaning has been forgotten?
    On this day, many in my neighborhood and small town knowing I'm a retired soldier will wish me "Happy Memorial Day!" While I appreciate the salutation; I'm befuddled by our collective loss of understanding and appreciation. Memorial Day is a day of remembrance and commemoration for those who died in the act of serving in our Armed Forces during war.
    There is a parallel of a lack of understanding and appreciation that applies to members of our forum. When folks learn of my lung cancer diagnosis, they retort, offhandedly-- "Oh you smoked!" Again, I am befuddled by that response. So, I'll add to my thoughts and commemoration, those who died by lung cancer because officials of our nation believe that smoking cessation is the only effective method for treating lung cancer.
    We commemorate those who have fallen, under arms or by lung cancer.
    Stay the course.
    Tom
  19. Tom Galli

    Trekking The Green With Seventeen

    By Tom Galli,


    Cancer Anniversary
    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.
  20. Tom Galli

    Contributors to cure

    By Tom Galli,


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

  21. Tom Galli

    The Smoking Gun

    By Tom Galli,

    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.
  22. Tom Galli
    Meet Charlett Emilyrose Wilson, my first grandchild.  Her parents, daughter Melissa and son-in-law Bill, are overjoyed.  I am ecstatic!  Proud would be a vast understatement!
    Charlett was born 12-years, 8-months, and 13-days after my diagnosis with NSCLC.  I celebrate this joyful milestone in my life for but one reason.  If I can live, so can you.
    Stay the course.
  23. Tom Galli
    “Squamous cell cancer offers distinct therapeutic challenges by virtue of presentation in older patients, its physical location in the chest, pattern of metastasis and association with comorbidities that can compromise treatment delivery and exacerbate toxicity.” This quote is from the article Targeted Therapy for Advanced Squamous Cell Lung Cancer.
    When diagnosed, almost 13 years ago, I didn’t realize lung cancer had types. Pathologists visually classify lung cancer cells seen under a microscope as small cell and non-small cell. From this simple delineation, further classification gets complicated introducing sub-type terms of adenocarcinoma, squamous cell and large cell. Large cell as a type of non-small cell? I recall dwelling on the large cell moniker and finally concluding a non-small cell can be a large cell.
    I remember the emergency room physician telling me I was lucky; my form of lung cancer was treatable compared to the other type. He didn’t say small cell, but I think that is what he meant. Indeed about 15-percent of us suffer from this nasty presentation that metastasizes rapidly.
    Adenocarcinoma sub-subtypes have morphed into an alphanumeric soup as research at the genetic level identifies biomarker profiles, mutations in an individual’s lung cancer that can serve as attack portals into the cancer cell by targeted therapy. Now adenocarcinoma survivors use terms like ALK, KRAS, EGFR and PIK3CA to further classify their disease and new targeted treatment drugs emerge to attack, like mutant Ninja Turtles! Some of these are so effective, they’ve moved to first-line therapy.
    Adenocarcinoma describes a type of cancer that occurs in the mucus-secreting glands throughout the body. Lungs naturally have an abundance of these glands but so do the prostrate, pancreas, and intestines. Squamous cells derive their name from the Latin squama meaning scale like those present on a fish. We have a lot of squamous cells including skin, the lining of hollow organs, and passages of digestive and respiratory tracts. The right main stem bronchus contained my squamous cell tumor. The location is what tipped-off the emergency room physician; he didn’t realize how lucky I was given the nature of my treatment and extent of survival.
    Speaking of treatment, the cited article reports: “therapeutic progress in squamous cell lung cancer has been relatively slow, with relative stagnation of survival numbers….Treatment for SqCC [squamous cell cancer] of the lung remains an unmet need, and novel strategies are needed including specific targeted therapies….” That’s not good.
    First-line therapy for many continues to be the dual recipe of some variation of taxol and carboplatin, the same drugs I was administered from 2004 through 2007. And, survival rates have not significantly changed despite chemistry changes in platinum and taxol based agents. Thankfully, these have lowered the incidence of peripheral neuropathy and this is helpful.
    Second and subsequent line therapies for squamous cell have benefited somewhat from research. Immunotherapy research has yielded some success in developing drugs that enhance our immune system’s ability to recognize and attack cancer cells. The alphanumeric monikers PD-1 and PD-L1 are starting to resonate with squamous cell survivors. I do like the names of these approaches ⎯ PD meaning programmed death! The idea of programming cancer cells to die is satisfying although that is not the means of attack. Nevertheless, the scientist that named this approach deserves recognition because a scheduled execution of squamous cancer cells would be well deserved payback. All squamous lung cancer cells are programmed to die tomorrow at high noon!
    But, progress in the genetic arena for squamous cell cancer has been slow because it is genetically more complex compared to adenocarcinoma and mutates faster. So it is a harder target to hit. When I think of hard cancer targets, I am reminded of Siddhartha Mukherjee’s superb book The Emperor of all Maladies. He aptly describes the challenge of chemotherapy as “finding some agent that will dissolve away the left ear and leave the right ear unharmed.”
    He also called cancer a “clonally evolving disease.” Cancer cells grow by cloning at a rate far faster than normal cells. Every new cohort creates mutants and some of these survive the assault of chemotherapy. All that need survive is one; it will rapidly grow now immune to the drugs targeted to kill it. Mukherjee said: “the genetic instability, like a perfect madness, only provides more impetus to generate mutant clones. Cancer thus exploits the fundamental logic of evolution unlike any other illness.” Cancer is pure evolutionary nastiness!
    “Better things for better living through chemistry” was the tagline of the DuPont Corporation. Growing up in southeastern Pennsylvania, many neighbors were chemists commuting to the company research center, just across the Delaware state line. DuPont changed our world evolving from an 1802 gunpowder maker to inventing Nylon, Mylar, Teflon, and Nomex to name a few. Squamous cell lung cancer survivors need better chemistry. The call goes out for a biochemist to step-up and shut down the perfect madness of the clonally evolving squamous cancer cell.
    Stay the course.
  24. Tom Galli

    Thanksgiving

    By Tom Galli,

    Today, in the United States, we celebrate the holiday of Thanksgiving.  Our first president, George Washington, called for an official “day of public thanksgiving and prayer” in 1789 and although the Congress heartily agreed, the proclamation was lost in the bureaucratic press of politics.  It fell to Abraham Lincoln to rekindle the Thanksgiving Holiday shortly after the pivotal battle of our Civil War—Gettysburg in 1863.  Thus in the mist of warfare and uncertainty, a holiday dedicated to thankfulness was founded.  
    Today, we gather to celebrate life and thank the Almighty for health and bounty.  Thankfulness for me, a lung cancer survivor, is particularly significant for I have been blessed to witness one of life’s most memorable events: birth of a first grandchild.
    During my recent visit, while cradling her in my arms, I felt a connection with my infant-offspring.  As the picture captures, Charlett Emilyrose was looking intently into my eyes, unusual for a three-week old baby.  She held my gaze for the longest time as if painting a mental portrait.  Her grandfather was joyous and delighted and thankful. 
    This touching moment is unfortunately rare for those with lung cancer.  By statistical expression, Thanksgiving 2005 should have been my last celebration.  Yet, nearing my 13th year of surviving a lung cancer diagnosis, I am so thankful to have witnessed the birth of a grandchild. Providence has indeed showered me with gifts.
    So today I give thanks for survival and in the spirit of George Washington’s original scope of holiday, I pray all who suffer the effects of this horrid disease experience the joy and delight I felt as I held my granddaughter in my arms.  Happy Thanksgiving all.
    Stay the course.
  25. Tom Galli
    I am a capitalist!  I firmly believe profit is a reward for good performance and indeed it is an expected reward.  Nothing is more important in business than making a profit.  Nothing!  My purpose for writing this is to acquaint you with a new type of business on the lung cancer scene — a for profit advocacy company.  That’s right, companies have been formed to advocate for and sustain those in lung cancer treatment and expect to earn a profit -- off us!  Let that sink in for a moment.
    Why a for profit seeking venture for lung cancer? Our disease kills three times more than any other type of cancer.  Research into breast cancer is making the “pink ribbon” disease a declining market.  And, perhaps lung cancer is finally getting a research break with the emergence of targeted therapy and advances in immunotherapy for types of non-small cell lung cancer.  Investment capital necessary to start the profit engine sees a growth opportunity -- from us!
    Let’s get down to business by creating 2 companies: call them Non Profit and For Profit.   Both have a revenue projection of $1,000.  Non Profit gets revenue from donations; For Profit from sales.  For Profit has a 20-percent profit expectation.  Non Profit has none.  Non Profit can spend all of its revenue — $1,000 — advocating for us.  For Profit can only spend $800.  Twenty percent of its revenue must be profit.  From the eye of the lung cancer patient and survivor, which company is more efficient and effective.  If dollars spent advocating and supporting are the measure, clearly Non Profit.
    That is the business case, but there is a more important case at hand.  For profit companies are establishing a business that makes money from our malady, our pain, our side-effects, our recurrences, our suffering.  They are not selling drugs or providing treatment, they are advocating, for profit -- on us!  You might want do a little checking before establishing a relationship with a new guy on the block.  Rest assured, LUNGevity remains a Non Profit. Private message me for details.  Be careful out there!
    Stay the course.
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