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Tom Galli

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  1. Tom Galli

    A Life Well Lived

    By Tom Galli,

    A lady with lung cancer passed early this morning. I knew her well. She survived two surgeries claiming a lung, radiation, and many many infusions of chemotherapy. Indeed, her disease was being treated like diabetes or heart disease — a chronic but controlled condition.
    Lung cancer did not claim her and death is not a celebratory event, but living a full and meaningful life despite lung cancer is indeed praiseworthy. In characterizing the lady’s life, full and meaningful are an enormous understatement.
    In recalling our years together, I am struck by how few times we talked about lung cancer.  We shared a disease but talked about stock shows, cars, fashion, movies, politics, family, travel, ranching, tomatoes, and friends. That she would not achieve NED didn’t bother her a bit. “I’ve got things to do and doing nothing ain’t gonna happen!” 
    I will morn her passing.  I will also strive to emulate her lifestyle.
    Stay the course.
  2. Tom Galli

    Hope Is A Good Thing

    By Tom Galli,

    Red, in white shirt and loose thin-black tie and sweating in Maine’s summer heat, is leaning on a rock-wall fence.  He’s just opened Andy’s letter found under the black obsidian rock.  In the background we hear Andy reading his evocative description of hope: “Remember Red, hope is a good thing, maybe the best of things and no good thing ever dies.” The movie Shawshank Redemption is a powerful story about hope and life with a message that should resonate with every lung cancer survivor.
    I watched the movie the other day and made the connection.  Andy was imprisoned for two life sentences with no possibility of parole.  He was wrongly convicted of murder and throughout the story of his day-to-day life in prison, everyone tells him “hope is a dangerous thing.”  On escaping, Andy proclaims that hope is “maybe the best of things.”  The movie story line is exactly parallel to the plight of the late-stage diagnosed lung cancer patient ⎯- an unforgiving disease with hope as the most effective means of avoiding consequences.
    For lung cancer, hope is not a medical remedy.  While new lung cancer treatments are emerging more frequently now, basic research funding to diagnose and treat lung cancer lags other cancers.  Perhaps the pace may pick up, one hopes.  Perhaps a treatment may emerge just in time to save a life, one hopes.  Perhaps a miracle remission occurs, one hopes.  Hope may not be a medical remedy but, for many of us, it is our only effective medicament.  And, in my case, hope is “maybe the best of things.” 
    Recall the story line of Shawshank.  Andy’s future is confinement in a mind numbing institution, but he makes a choice to live in a different reality and works diligently, every day, on a novel escape plan. He makes a conscious decision to live.  He embraces the hope of escape against all odds.  Andy’s poignant characterization about life reveals his reasoning: “I guess it comes down to a simple choice, really.  Get busy living or get busy dying.”  Exactly!
    Sometimes in the heat of lung cancer treatment, we forget its purpose ⎯- extended life.  No one knows how long but life for most is extended. So what do we do with the extension?  Re-read Andy’s characterization.
    We long for a period of life extending into satisfying old age.  But most without lung cancer do not dwell on the amount remaining on account.  Lung cancer patients take careful measure of the balance.  But, measure for what end?  I believe, if one chooses treatment, then one chooses life.  Rather than dwell on the remaining balance, focus on doing something you enjoy everyday.  I suggest a survivor forget the past, declare the future irrelevant, and live in the day.
    “Get busy living or get busy dying.”
    Stay the course.
  3. Tom Galli
    Early on, we learn Algebraic equations with only one solution. Then we encounter equations with two solutions -- Quadratic Equations. Consider: x2 + 3x – 4 = 0. This has two solutions:  x = -4 or x = 1. Both are correct; one is negative and one is positive. Algebra students get very comfortable with solutions having a positive and negative outcome -- lung cancer survivors are less comfortable!
    The positive outcome for lung cancer is extended life. But like quadratic equations, there can be negative outcomes that are less desirable.  Mine is chronic pain.  So to the question, how does one fit a negative outcome into the positive?  No, Algebra does not help.  But, for those in treatment or surviving after treatment, preparing for life with negative outcomes is helpful.
    My chronic pain has two primary and many secondary causes.  I have peripheral neuropathy -- numbness in fingers and toes including a burning sensation in toes and pain in the foot joints.  It is a common Taxol side effect, and we informally call it “taxol toes.”  Also, I have nerve damage caused by quite a few surgeries to my right chest that is chronically painful. How do I fit these negative outcomes into life?
    My strategy is to tolerate chronic pain until bedtime.  Then something must be done or I won’t sleep.  I’ve cycled through over-the-counter, then prescribed sleep medications.  Both worked for a while.  Doc found a study suggesting a therapeutic effect for Xanax on chronic pain.  He prescribed a 0.5mg dose at bedtime, allowing an increase to a total of 1.5mg.  This relaxes me and makes me drowsy.  It works about 6-in-10 nights. 
    A secondary cause sometimes drives pain above chronic levels. These are: chemotherapy induced joint pain; muscle cramps; stress, anger and excitement; sneezing and coughing; and flying on aircraft.  The joint pain, an in-treatment side effect, required narcotic medication in every case to relieve.  Reliance on narcotics has two downsides: an inability to think and function normally the next day and constipation. However, other secondary causes occasionally require narcotic medication to achieve relief.  Because of the downside to narcotics, we’ve developed a couple of unique pain abatement procedures that may be of interest.
    Our first strategy is to apply prescribed lidocaine transdermal patches to incision scars and or feet in combination with Xanax.  Since lidocaine dosage is limited to 2 patches, my wife cuts them into strips and fits them along my incision scars, and applies them to my feet.  A pair of tight fitting socks are stretched over my feet to keep them in place. When the offending pain spike is either in my chest or feet, a full 2-patch application is used.  The patches are applied in time to allow the Xanax to work and I sleep, hopefully.
    The next works only for feet and is a back-up strategy if lidocaine fails.  My wife uses an ace bandage to wrap reusable frozen Blue Ice packs to the bottom of each foot.  The cold is very uncomfortable for a couple of minutes, but in a short time my feet are numb and if I’m lucky, I sleep.
    Muscle cramping is a long term side effect from chemotherapy. It stems from low Magnesium blood levels.  I take at least 500 mg of Magnesium supplement per day.  My oncologist would rather I take 1000 mg, but I suffer digestive system revolt. I learned that almonds provide 75 mg of Magnesium per ounce so I snack in lieu of a second pill.  Regardless, I still experience one to two cramping events per day.  When they occur anywhere near my feet or chest, chronic pain soars.   There is however, no remedy for cramps.  The worst occur in the middle of the night and wake me up.
    Archimedes, the ancient Greek hydrologist, provided an explanation for why immersing up to my neck in a swimming pool eases incision pain.  The upward buoyant force of the water offsets the gravitational pull on chest incisions thus minimizing pain.  Almost every day our community pool is open, I spend hours in the water.  This does not eliminate pain but reduces it noticeably. On leaving the pool, the normal level returns but it is very therapeutic.  Lying in a bathroom tub, unfortunately, does not work because there is not enough water for complete submersion.  A hot tub works fine, but there is no difference in pain relief from water temperature. 
    Flying in a commercial airliner also spurs chronic incision pain.  Most airlines pressurize their cabin between 6,000 and 8,000 feet pressure altitude.  This lower-than-sea-level pressure expands my chest cavity increasing incision pain.  All commercial flights hurt but long flights are very painful often requiring a dose of narcotic medication in flight.  Not flying is the only remedy.  Those having thoracic surgery have long complained of incision pain after commercial air flights and cabin pressure is the cause.
    Another secondary cause is extensive coughing and sneezing.  Sneezing is particularly bad when it is a “surprise sneeze”.  During the worst pollen events, I stay indoors and I try and avoid school age children to keep the chest colds in check, especially when school is in session.  The last secondary cause I have the most control over: stress, anger and excitement.  Admittedly, excitement is the easiest to control except when the Dallas Cowboys are playing my beloved Philadelphia Eagles.  These two games a year are indeed stressful and since I live among cowboys, someone is going to be angry over the outcome.
    My wife reminds me when I complain too much that I am lucky to be alive.  What’s a little pain given the alternative.  She’s right.  Doc reminds me to avoid scheduling things in the morning so I can sleep-in late if pain interferes.  He’s right.  Football season is right around the corner and it is a good thing games are scheduled in the afternoon and evening.  
    Now if the Eagles start winning, everything will be fine!
    Stay the course.
  4. Tom Galli
    "Count-off...One, Two...Count-off...Three, Four...Bring it on down now...One, Two, Three, Four, One-Two...Three-Four!" 
    My life is filled with counting.  As a young soldier on the march, we counted cadence to stay in step.  The rhythm of the cadence was an elixir to the mile-upon-mile-upon-mile of forced march in full combat load.  They always scheduled the forced march on the hottest day, or the wettest day, or the coldest day of the year.  One memorable march was the day after a hurricane!  Weather or not, we marched and counted.
    After diagnosis with lung cancer, my life embraced a different sort of cadence.  There was the countdown to scan day, then time stopped waiting for results.  One...what time is it...just ten in the morning...the clock battery is out...is it back...how bad...how many nodules...how big...ten-oh-two...mets in the bones...liver also...scan tech didn't smile...he saw something...ohGod....  Life just stopped waiting for results.  Time stopped!
    Waiting for scan results is absolute misery coupled with measured doses of agony and anguish, torment, despondency and gloom thrown in for good measure!  Each day was a twenty-five-mile forced march that started but never ended.  Cancer sucks but waiting for scan results sucks squared! 
    Stay the course.
     

  5. Tom Galli
    “Drug-related deaths have grown to be a major US public health problem over the last two decades.  Between 2006 and 2015 there were more than 515,000 deaths from drug overdoses.…” This from a March 26 article in Science Magazine. The death rate averages 5,722 per year over the cited period.  Further, “the drug epidemic is a pressing concern among policymakers.” This concern translates to a $865 million research budget for the National Institute on Drug Abuse. This budget funds $151,117 per individual drug-related death.
    This year, 163,199 Americans are projected to die from lung cancer. The National Institute of Health Lung Cancer research budget for 2018 is $282 million.  This level of research amounts to only $1,727 per individual death. 
    Lung cancer kills 28 times more people per year than drug addition, but the drug addiction research budget is 87 times larger then lung cancer’s on a per-death basis.  Clearly, our public health policy makers fail to understand the meaning of the word major.  The major and largely unaddressed US public health problem is death from lung cancer.
    Stay the course.
  6. Tom Galli

    My Friend Randy

    By Tom Galli,

    It was mid-morning on a beautiful February Sunday in Texas when my phone rang.  Randy’s name flashed on my phone screen and on realizing who it was, my mind raced to recall the last time we spoke. Pam his wife greeted me, a mild surprise.
    Randy and I grew up in the same Pennsylvanian township and attended high school together.  Our lives parted with college and after an Army career took me everywhere but home. Randy settled in our hometown.  We had many things in common including surviving lethal cancer.
    Five years ago, Randy and I had a fortuitous meeting online in a cancer blog site.  Randy was diagnosed with Chronic Lymphocytic Leukemia (CLL).  We soon reconnected and were gabbling away during marathon telephone calls.  When we spoke, our wives went shopping!
    Our last conversation was shortly before the Super Bowl. Randy’s disease reoccurred and he was back in chemotherapy.  He’d seen blood work indicators during the fall, yet he remained hopeful that treatment would again arrest his cancer. Randy’s form of CLL was characterized by adverse prognostic factors. CLL is rarely cured; never cured applied to Randy.
    While recurrence and mortality were frequent topics, hope and joy always dominated our conversations.  We helped each other find meaning in our fragile lives.  We coached away depression.  We talked about everything: music, obtuse rock-in-roll lyrics, being young, high school girls, cars, motorcycles, politics, military tactics, bourbon, ballistics, physics, even the strength characteristics of bolts. We formed a bond of friendship experienced by few. 
    Pam’s voice was a tell and then instantly I knew Randy was no longer a survivor. Our friendship ended on February 17th.  Pam is without her beloved husband, and I am missing my dear friend.  Randy was a man of great wisdom tempered by uncommon common sense.  His virtues of kindness, selflessness, and courage stood like great pillars in our least-common-denominator world. Today, that world is smaller, colder, and far less interesting.
    For Pam.
    Stay the course.
     
  7. Tom Galli
    This is my fourteenth anniversary surviving a lung cancer diagnosis.  Granddaughter Charlett's decorated toes join mine to keep our right feet forward! I paint my toes every year as a celebration of the joy life brings. In early treatment, there was no joy.  There was fear, frustration, pain, uncertainty and scanziety. I'd not yet discovered Dr. Phillip Bearman who taught me the reason for lung cancer treatment -- achieving extended life.  Phil decided he would live every moment to the fullest despite the rigors of treatment, and he'd celebrate every year of survival with a painted red toenail.  He couldn't control his lung cancer, but he could control the way he felt about his lung cancer.  I started living when I internalized his message.  My first paint job was at my third anniversary and I'll never miss another.
    I am a lung cancer survivor. My message for those in treatment is twofold: enjoy the life extension treatment provides and if I can live, so can you.
    Stay the course.

  8. 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.
  9. 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 
  10. Tom Galli

    Tis The Season

    By Tom Galli,

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

    Second Opinions

    By Tom Galli,

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

    Breathe Deep

    By Tom Galli,

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

  14. 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.

  15. 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 
  16. 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
  17. Tom Galli
    The other day, in conversation with a newly minted medical school graduate, he told me low-dose computed tomography (LDCT) was dangerous. Dangerous! If LDCT is dangerous, what is late discovery of lung cancer? He nearly fainted when I told him I had perhaps more than 40 CT scans in my treatment history, telling me I was a candidate for radiation induced cancer. It didn’t seem to register that I was a candidate for extinction by lung cancer.
    We are told the only effective way of treating our disease is early discovery. Few dispute this point. Why then would the Center for Medicare & Medicaid Services (CMS) want to reduce reimbursement for low-dose computed tomography (LDCT) screening by more than 40 percent? The Society of Thoracic Surgeons is concerned calling LDCT a “game changer in the battle against lung cancer.”
    Then I read: “Family physicians lack sufficient knowledge about recommendations for LDCT." Moreover, Doctors Patz and Chen, professors of radiology at Duke, say: “Not screening patients annually could save millions in health care costs and spare patients the radiation exposure and downstream effects of false positive screenings.” Something is very wrong. We have an effective tool for early discovery of life-threatening disease when not discovered early, and there is a campaign mounted against using it.
    CMS is a federal government-funded agency. In government programs there is a big difference between savings (cash you can put in the bank) and avoidance (cash spent elsewhere). CMS money is appropriated in broad categories. Once appropriated, fiscal managers move money around to address other needs or requirements. Appropriated federal funds are almost never returned to the Treasury. So the reduced funding for LDCT will be a bill payer for some other CMS program. No money is saved; it is spent on something else.
    Further, when making a valid cost avoidance argument, one must identify all cost. For example, the professors of radiology predicting savings for reduced screening do not identify the millions of dollars of increased cost for treating late-stage-diagnosed lung cancer. A cost avoided almost always results in cost added somewhere else, and without disclosing added burden, professionals are making very unprofessional arguments.
    Lastly, and most importantly, no one advocating reducing LDCT is considering the most important impact—suffering. There is a vast amount with late-stage diagnosis. Suffering affects more than the lung cancer survivor; it devastates families. While real and detrimental, suffering defies quantification in dollars. Several hundreds-of-thousands of us in the United States will suffer a late-stage lung cancer diagnosis this year. LDCT can eliminate some of this.
    In this light, it is hard to understand the assault against using LDCT to find, fix, and finish lung cancer!
    Stay the course.
  18. 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.
  19. 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.
  20. 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. 
     
     
     
     
     
  21. 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.
  22. 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.
  23. 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.
  24. Tom Galli

    Olympic Surgery

    By Tom Galli,

    The summer Olympics kindles an unpleasant anniversary.  I was in hospital recovering from a failed bronchopleural fistula surgery complicated by pulmonary embolism, further complicated by pneumonia, and then aspirational pneumonia. After surgical mayhem and ensuing coma, I settled into a nil per os or NPO recovery from a uncooperative epiglottis.  July, August, and early September of 2004 were clearly the worst days of my life.  The only joy was watching Katie Couric’s daytime TV Olympic broadcast from Athens.  Two weeks of Olympic distraction amid repetitive admissions to the ICU as my doctors, nurses, and respiratory technicians struggled to keep me alive.
    I don’t have specific memories of the games or any athlete.  I can only recall the TV setting for Couric’s broadcast -- a shoreline location framed by Greek coastal mountains in the background and the deepest blue ocean I’ve ever seen.  I’d wait for her show to come on and the camera to pan along breathtaking vistas while smelling coffee and food deliveries.  I longed for so many things in that time. The smell of hospital-grade coffee was so tantalizing, it almost undid me.  Till I met the hospital speech pathologist.  She delivered the undoing.
    Lung cancer patients learn a lot about hospitals.  Doctors, excepting surgeons and anesthesiologists, do very little hands on patient care.  This is the realm of nurses and medical technicians.  But, who treated my lazy epiglottis -- a speech pathologist.  A young woman, as I can recall, small in stature but with the confidence and swagger of an army SERGEANT MAJOR.
    For those not acquainted with a sergeant major, it is best you not cultivate a relationship.  They make the army THE ARMY.  They are not nice, friendly, kind or cuddly.  They are confident, demanding, curt, and irascible, in the extreme!  My speech pathologist was the hospital’s SERGEANT MAJOR.  She chewed out my surgeon for slipping me a cough drop.  “Can’t you read the NPO sign”, she barked in a voice that made doc jump out of his skin.  The ENT doc who scoped my defective epiglottis deconflicted his visits to stay out of her range.  
    She was the only one in the major medical center who knew anything about treating a uncooperative epiglottis?  And, like army sergeants major, she was a taskmaster.  Indeed talking (screaming) was the therapy.  She wrote out weird, difficult, nearly unpronounceable guttural sounds that I had to recite despite the discomfort of a nose-to-stomach feeding tube. She appeared 4 times-per-day to drill me, then often 2 or more surprise visits to ensure I was properly bellowing. This guttural workout, combined swallowed-thickened-liquid observed by a timid radiologist manning a fluoroscope in the presence of the sergeant major, lasted nearly a month.  But it worked.
    The 2016 Olympics are in Rio, but the games take me back to Athens and my speech pathologist sergeant major.  Thank you Sergeant Major!
    Stay the course.
  25. 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.
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