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Tom Galli

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  1. 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.
  2. 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.
  3. Tom Galli
    I’m reading of a Yale University study that advocates we choose primary care physicians by testing their political views. It is political open season and medical reporters want to join in the feeding frenzy.  The danger is some will believe a political test (views on motorcycle helmets, pot smoking and firearms to name a few) is necessary physician competency criteria, especially since the test is aimed at our closest and most important connection to the medical system—the general practitioner.
    Although medical specialists (surgery and oncology) treat our lung cancer, we often develop illness unrelated to cancer, or just as likely, a side-effect runs wild.  So a general practitioner (GP) is a very important part of our treatment team.  Presuming you just realized you need one, what are factors a lung cancer survivor should consider in selecting a GP?  Here is my list.
    A Good Listener.  Does your GP listen?  This trait is essential for we have a serious ailment with complex symptoms. During chemotherapy, I didn’t have one symptomatic complaint, I had many and they overlapped and changed day-to-day. A listening GP will hear you out, then asks clarifying questions about symptoms before launching into an exam or grabbing the prescription tablet. Off The Clock.  Does your session seem rushed? Some I know complain their doctor is “on the clock” like a game show contestant during consultation.  That’s not good.  Part of the consultation should be reviewing the reports of specialists involved in your cancer treatment.  And, questions should arise after reports and test results are digested.  A proper review with understanding takes time, not a beat the clock contest. Renew Specialist Prescribed Medications.  Murphy’s Law of medicine is your nausea medication runs out just when your oncologist is booked solid.  Do you have a GP that will come to the prescription rescue?  Some doctors don’t want to intrude on practice privileges of other doctors.  That may be a fine philosophy but when you are suffering and a simple renewal script solves the problem, your GP ought to write the script.  This is a good question to ask when interviewing a prospective GP. Cancer Aware.  In lung cancer treatment, there are medical treatment effects—say radiation burns; medical side effects—nausea, pain, numbness; and related medical problems—depression, chest infections and even common colds.  Your GP should understand the complexity that a simple chest cold might mean to a lung cancer survivor.  Questions and observations to ferret out depression is an important diagnostic role and treatment or referral are essential.  Known and Respected.  My GP was the quarterback of my treatment team.  He selected the players (specialists), monitored their treatment, and intervened to steer the team to a solution that saved my life.  Your GP needs to know practitioners and be able to influence their actions when medical timidity breaks out.  That speaks to a seasoned professional well known in the local medical community. Politics and medicine should be like oil and water—never to mix.  Medical doctors have a higher calling and abide by the Hippocratic Oath.  They swear to share medical knowledge, act always to benefit the sick, and to treat those ill warmly with sympathy and understanding.  In stark contrast, I can name quite a few politicians who forgot taking an oath of office the instant after administration.
  4. Tom Galli
    I will donate all Scanziety Amazon Kindle Store sale royalties for the Month of November to LUNGevity.org to support much needed research. I wrote for the book for three reasons. First among them is “to raise a call to arms for funding lung cancer research.” Help me raise the call to arms! Read a book about surviving lung cancer and donate to sponsor research to find, fix and finish lung cancer.
    Stay the course.
    Get your copy of Scanziety here https://www.amazon.com/Scanziety-Retrospection-Lung-Cancer-Survivor-ebook/dp/B01JMTX0LU 
     
  5. Tom Galli

    Fearing Lung Cancer

    By Tom Galli,

    The lights dim, the announcer’s introduction complete, now all the stand-up comedian needs to do is be funny. We’ve all seen one bomb.  Even the best have a bad night.  Overcoming fear must be a prerequisite for a comedian. Comedian and author Jerry Gillies developed an excellent approach for handling fear: “Confront your fears, list them, get to know them, and only then will you be able to put them aside and move ahead.”
    This is very relevant advice for a lung cancer survivor.  I practiced a broader form of writing down fears by producing a journal of treatment experiences.  I still re-read that journal to keep connected to my treatment.  While I read the entire entry, I concentrate on what I was afraid of. So in a broader sense, I practiced Jerry Gillies' sage advice and benefited from it.
    The power of writing down fearful things is important because my fear quickly morphed into a monster by spawning a multitude activities that I may or may not have been frightened by. For example, chemotherapy infusions were frightful events — at least that is the way my journals in early treatment read.  But was the entire infusion process frightening?
    What I was afraid of was installing the IV, not the stick, but the wiggle to find the right place to situate the device.  An irrational fear because wiggling generates a mild discomfort but in my mind, wiggling is enduring torture. I have this mental picture of being strapped to a chair for interrogation while nurse-after-nurse “sticks and wiggles” on every extremity.  Just last week during a blood draw, the head phlebotomist had to pin me to the chair because I was “going down” during the procedure. A quick application of smelling salts saved the day!
    Following Gillies’ advice, I would write down “wiggle” on my list of fears.  Getting to know my fear of wiggling produced some ways to put it aside and move ahead.  My first way was Xanax.  One mg of Xanax about 30 minutes before a procedure and IV installs are a piece of cake.  Another way is to tell the nurse ahead of the procedure that I have a phobia and not to wiggle; pull it out and try another vein.  
    Another journal reveal is fear of pain caused by lung cancer progression.  Reading disclosed metastasizing tumors invading my spinal chord causing excruciating pain.  My oncologist dismissed this by explaining palliative radiation and hospice care. Thus, I was able to put this fear aside and continue on.
    A lung cancer diagnosis is the most frightening event in my life, treatment is a close second, and recurrence follows.  Lung cancer trumps everything else I deal with. But, I learned to face this fear.  Writing about fear helps me understand it and deal with it.  Jerry Gillies’ approach works.
    Stay the course.
  6. Tom Galli
    In the days before computers, college registration involved waiting in long lines.  Freshmen were last to register and my hope was an elective in social science, fine arts or music.  But when I reached the registration table, I was assigned the only open class, Theology 101—The History of Religion.  I was less than excited.  And, worse yet, it was a Monday-Wednesday-Friday 8:00 a.m. class.
    The professor was a Marianist brother, with PhDs in Ancient Languages and Cultural Anthropology, and five minutes into my first class, I realized he was a captivating lecturer. Possessing a gift for making the mundane interesting, he introduced each lecture with a compelling story. I was so fascinated by the depth and breath of the professor’s knowledge, I studied with him every semester earning me an unplanned a minor in Theology. I am not a theologian nor am I intensely religious. But Theology taught me a great deal about faith, hope and life.  Lung cancer interrupted my collegiate learning.
    Faith is more than a religious virtue; it is a distinctive human trait. Hope comes from faith. Thomas Aquinas, the noted 13th century Christian philosopher, explained the relationship with these words: “faith has to do with things that are not seen and hope with things that are not at hand.”  Faith and hope are essential virtues for lung cancer survivors.  We don’t see evidence of treatment at work, yet faith causes our belief they are, and we are ever hopeful of achieving extended life. Hope then is our bastion against things we cannot control like life threatening lung cancer.  
    Life has a beginning and an end. Both are uncertain and often beyond influence.  In between comes living, and we have some control over the nature and quality of life.  While in active treatment, I forgot my ability for self-determination resulting in 3 years of wasted life.  Almost everyday, someone comes to this forum expressing fear, uncertainty, and despondency. I well understand why, but I also know that a lung cancer is not the end of life; it is part of life.  In that vein, I recall a quotation by Saint Rose of Viterbo framed in my professor’s classroom. “Live so as not to fear death. For those who live well in the world, death is not frightening…”  Have faith, hope and live well.
    Stay the course.
  7. 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.
  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

    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
  10. 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. 
     
     
     
     
     
  11. 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.
  12. Tom Galli
    I'm the guy who paints a toenail for every year I live beyond my February 4, 2004 diagnosis day.  This year our toes are LUNGevity Blue to honor the foundation that is dedicated to changing outcomes for people with lung cancer through research, education and support.
    There are many people who've been instrumental in my survival and making a life after; none are more important than my loving wife -- Martha Galli. If I can live, so can you!
    Stay the course.
    Tom Galli
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