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Tom Galli

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Blog Entries posted by Tom Galli

  1. Tom Galli

    Twenty Years of Life

    By Tom Galli,


    Stay The Course Blog
    Twenty years ago, on this date, I was handed a surprise diagnosis of lung cancer in an emergency room. The X-ray showed a very large tumor in my right lung that perfectly explained hemoptysis, the reason for my ER visit. My GP admitted me for a diagnostic work-up, and I spent 4-days inhaling albuterol while being scanned, poked, and prodded.
    In the hospital, I met my medical oncologist and pulmonologist who told me I had about a 7 x 2.5 cm tumor filling the main stem bronchus of my right lung. The tumor was bulging into my airway causing vigorous coughing and complicating an unsuccessful flexible bronchoscope biopsy. Several drama-filled weeks later, my thoracic surgeon performed a biopsy to reveal squamous cell carcinoma. Unusually, no lymph nodes were involved. Staging was complicated; no lymph node involvement suggested IIIA but size pointed to IIIB.
    There were few resources in those days explaining lines of treatment or prognosis.  The American Cancer Society suggested smoking cessation as a treatment method. Dr. Google revealed I might have 6 months of remaining life.
    Treatment started with chemoradiation to shrink the tumor and allow a pneumonectomy and ended with precision radiation to fry a reluctant tumor camping in my left lung (metastasis after surgery). I had 4 recurrences and 5 lines of treatment before achieving no evidence of disease (NED) in March 2007. My medical oncologist deemed me cured of lung cancer in March 2021 and then retired from practice.
    What have I learned? Medical statistics predicting remaining life by stage and type of lung cancer are imprecise and inaccurate, even today. Why? Listen to this elegant essay “The Median isn’t the Message” by Professor Stephen J. Gould that kindled the first ray of hope for a good outcome.
    Depression does not improve by ignoring symptoms. Thankfully, doctors who treat lung cancer today are assessing for depression and referring to professionals. Expect to be depressed and cooperate with treatment.
    Faith and hope matter and I believe they influence outcomes. I am a man of religious faith, but faith is an innately human trait. Religion is not required to believe treatments not seen are working to combat lung cancer, and faith fosters hope, and “hope is a good thing and good things never die.”
    Finally, consider that if I can live, so can you!
    Stay the course.
    Tom
  2. 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
     
  3. Tom Galli

    LexieCat, Esquire Rests Her Case

    By Tom Galli,


    Stay The Course Blog
    LexieCat joined us on June 29, 2017 after taking advantage of low-dose CT screening for folks at risk for lung cancer. That test revealed a small highly suspicious single nodule that was surgically removed. She had a successful lobectomy; we all hoped she was one and done.
    Lexie, a screen name for Teri Garvey, was a district attorney in Camden, NJ. In my younger years, Camden, across the Delaware River from Philly, where I lived, was an industrious town bustling with shipbuilding, soup making (the Campbells Soup Company), distilling, and iron working. The deindustrialization of America hit Camden hard and when the jobs left, crime moved in. Camden, now a hard-edged town, made enforcing the law a dangerous occupation. But Teri was a tough lady, fearless, courageous, and dedicated to justice.
    We met in person during the 2018 LUNGevity Summit. She a lawyer, master of words and ideals, and I the engineer, entrenched in physics and things, discovered a fond friendship. Summits are our “shining city upon a hill”. Surviving lung cancer is a mighty forcing function. Our bond of survival transcends differences.
    Teri became a bastion of support for our forum. A witty quip-master, her parody of new drug names was quintessential Garvey—“…it makes me think of Buzz Lightyear: “To Imfinzi and beyond.” On starting combination chemo with immunotherapy, she offered: “My motto, walk softly and carry a big drug.” After a clean scan report a member, knowing of her broken collar bone, suggested she not do a happy dance. Teri responded: “Sadly, you know me all too well. [My] Childhood nickname—‘Princess Grace.’”
    Nearly 3 years after surgery, a scan showed tumors in her lung and sacrum. Her second-line treatment in September 2020 was combination chemo (carboplatin, Altima and Keytruda). Scans in April 2021 showed progression. She decided to join the arduous and risky Ivoance Tumor Infiltrating Lymphocytes (TIL) trial which ended early for her after 5 of 6 scheduled infusions. A good news scan was joyfully celebrated in July but by October, cancer cells were found while draining a pericardial effusion. Her defenses down from the TIL trial, Teri struggled to return to good health. She experienced a series of exhausting hospitalizations from October though the New Year that sapped her energy but not her fortitude. Cancer was beating her body not her spirit. In a private message, she sent me this photo with the quip: “I finally love my hair!” Teri chose hospice care on February 19, 2022. She passed surrounded by loved ones on February 25th.
    Teri was one of those very special people I’ve met on my life’s journey. Like so many, her diagnosis was a surprise. Her attitude after diagnosis is one to emulate. Teri told me lung cancer would not change her. She lived every minute of every day caring for people, seeking justice for victims, and helping the unfortunate. She told me she chose the risky TIL trial because it might help someone down the road. It might indeed.
    Stay the course.

  4. 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.
  5. 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.
  6. 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.
     
     

  7. 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
  8. Tom Galli

    Scanziety Builds Character

    By Tom Galli,


    Stay The Course Blog
    My CT was on August 30th but I needed to wait till today to get the results—from a new medical oncologist. He’s my kind of guy achieving undergraduate and graduate degrees in engineering before going to med school. We talked a bit on how things have improved since the dark ages of my diagnosis. I told him of my rabid scanziety driven by a 12-day dwell from test to results. He told me I’d not receive the same treatment if I was diagnosed today. I told him I was happy I was not being diagnosed today, or was I?
    I find inspiration when encountering stirring words while reading. An article about Joshua Chamberlain, a professor of languages and rhetoric at Maine’s Bowdoin College, told of his exploits as the country slipped into the Civil War. Chamberlain knew nothing about soldiering when Maine stood up its first regiment and declined the governor’s offer to command claiming insufficiency. But, he joined the cause as a lower ranking officer to learn how to soldier. He learned well. His leadership and commandership at the battle at Little Round Top during the second day of Gettysburg is still studied by current-day Army officers. For his courage, skill and character in that battle, he was awarded the Medal of Honor.
    On dedicating a memorial to Maine soldiers at Gettysburg, 25 years after the battle, Chamberlain asserted “it is character that tells.” Similarly, the tell in surviving lung cancer is character.
    Chamberlain said: “What I mean by character is a firm and seasoned substance of soul. I mean such qualities or acquirements as intelligence, thoughtfulness, conscientiousness, right-mindedness, patience, fortitude, long-suffering and unconquerable resolve.”
    A “firm and seasoned substance of the soul” that results in “unconquerable resolve” to survive. That essence is built day-by-day as we endure treatments, sometimes cycles of treatment, sometimes cycles-upon-cycles all with uncertain outcome.
    What was my scan outcome, you ask? All the typical magic nodules waxing and waning from scan-to-scan showed up. He laughed about me charting their location by spreadsheet. And we had the hypo-dense vs. hyper-dense liver lesion discussion, and a remark about that kidney stone that has been hanging around for 10 years. Then he told me he was reducing my oncology appointments to 1 time-per-year and changing up my scan to a low-dose CT chest type without contrast. He said that interval and type of scan is fully appropriate for one cured of lung cancer. I guess scanziety builds character!
    Stay the course.
    Tom
  9. 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
  10. 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.
  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
    I continue the tradition of anointing my toes with paint for each year I survive this horrid disease. Till year 14, I applied red paint; now it is Lungevity blue. The tradition of painting a toes was started by Dr. Phil Berman, a never smoker radiologist diagnosed with Stage IV, NSCLC. He started RedToeNail.com, an early online cancer survivor blog and painted 5 toes of life before lung cancer claimed him.  My tenure of life is a message of hope. If I can live, so can you.
    Stay the course.

  13. Tom Galli

    Twice A Veteran

    By Tom Galli,

    I’m an armed forces veteran. Also, a late stage diagnosed lung cancer survivor veteran. A smoker, I once had little doubt that smoking caused my lung cancer. Yet almost everyone in my immediate family smoked and none developed the disease. Could the unique hazards of armed forces training and warfare played a role in my disease? 
    Looking back, early in my career were demolition projects involving World War II era structures that were filled with asbestos. On deployment, burn pits predominated and everything was mixed with diesel fuel and burned in cut-down 55 gallon drums. As an engineer soldier, we trained extensively with demolitions and smoke and dust was a common exposure. I also directed fabrication of aluminum armored vehicles that included fumes and vapor from aluminum welding and superfine dust from machining. Lest I forget, there was the omnipresent smoke filled haze that lingered for months after Saddam decided to burn the Kuwait oil fields. I’ve inhaled a lot of stuff during the course of my Army career and maybe that played a role in the development of my lung cancer.
    Fortunately, there are new tools and programs for armed forces veterans that might help avoid a late-stage diagnosis.  The Veterans Administration has two important programs to early detect lung cancer: VA-PALS, a low dose CT screening program for at risk vets and the Gulf War Registry Health Exam for veterans. LUNGevity is adding its weight to support veterans. We’ve just established a Veterans Forum in the Lung Cancer Support Community that is now open as a support and information resource. A low dose CT scan is a good idea for those who served.
    Stay the course.
  14. Tom Galli
    We are "locked and loaded" for our fifth Transatlantic cruise since I was diagnosed with lung cancer. This Sunday, we depart from Ft. Lauderdale and fifteen leisurely pamper-filled days later, arrive in Southampton, England. Along the voyage, we'll visit Bermuda (a first), the Azores (an other first), Lisbon (been there), Bilbao, Spain (a first), and Le Harve, France (been there). And best of all -- no jet lag! We are serious cruisers and are thrilled to cross the pond in a brand new ship (Celebrity Edge christened in Dec 2018). 
    Once we arrive in Southampton, we'll pick up a rent-a-car and proceed to get lost driving on the wrong side of the road as we explore England's picturesque Cotswalds region. We really do love getting lost in countries where we can almost understand the language! Then, after a week of land touring, we fly back home to usher in our summer.
    Vacations are important for everyone; they are vital for lung cancer survivors.  I find I need about 7 days of state change that removes me from day-to-day life and stress. On the eight day, I float in a mental sea of serenity and on this trip, I do hope for calm seas throughout our voyage.   
    Stay the course...we will!
    Tom
  15. 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
  16. Tom Galli
    Remember the western movie scene — the debonair dressed pitchman rides into a small frontier town in a wagon whose canvas sides are emblazoned with Dr. Arturo Pedic’s Acme Elixir.  He sets up a stage, draws a crowd, and delivers the pitch.
    Yessireeebob! My specially formulated Acme Elixir is a sure-fired medicament for any illness. One bottle of this miracle wonder is guaranteed to cure any malady.  It is an antidote for ablepsy, ague, apoplexy, barrel fever, biliousness, dropsy, camp fever, consumption, french pox, grip, and even bronze john fever. Step right up folks. Ten dollars buys this marvel medicine!
    According to an American Society of Clinical Oncology opinion survey, almost 40-percent of Americans believe alternative remedies alone can cure cancer — that’s right 40-percent believe in Acme Elixir! Oh my, we’ve been teleported right back to 1870 era medical idiocy! Our collective faith in evidenced based cancer treatment has taken a severe hit.
    Why? I see a parallel to the campaign against childhood vaccines.  In 1998, a fraudulent research paper published in The Lancet asserted combined measles, mumps and rubella (MMR) vaccine caused autism. Innumerable scientific studies proved vaccines harmless, but blaming autism on vaccines was a sensational and compelling newsworthy story, and I remember the stories! 
    The internet allows the easy creation of a sensational and compelling newsworthy event — a cancer cure.  Webpages abound with astonishing survival stories from treatment by this, that, or the other alternative medicine thing. One common thread: all promise a sure cure for cancer. These are very believable presentations with videos offering jaw-dropping testimony bolstered by pseudo-scientific mumbo jumbo.  The internet today functions like the 1870 era snake-oil salesman!
    When diagnosed with lung cancer, one has but three choices: do nothing, alternative methods, or evidence based methods. Do nothing costs nothing and may work because cancer sometimes stops metastasizing without treatment.  Alternative and evidenced based methods cost you money.  Evidence based methods have another seemingly unrecognized advantage: outcomes are repeatable. Surgery, targeted therapy, precision radiation or immunotherapy works the same way for a very, very large number of people. Funny how hard it is to rundown actual results for large numbers of people treated with sure cure Acme Elixir.
    Stay the course.
  17. Tom Galli

    Comprehending the PET

    By Tom Galli,

    Almost every lung cancer survivor has a positron emission tomography (PET) scan these days. Now, a PET is often given with a computerized axial tomography (CT) scan.  The diagnostician is a radiologist; a discipline that does not write in lingua franca. What do the report words mean? Here is a summary of my August PET-CT to interpret radiology speak.
    INDICATION: (Why am I getting this scan) “The patient…with non-small cell lung cancer of the right main bronchus diagnosed in 2003 status post pneumonectomy….He has undergone previous surgery for bronchopleural fistula repair…Chemotherapy last administered May 2006…Cyberknife therapy for recurrent disease in March 2007…He more recently has cough and chest discomfort.” That’s me, no doubt, but this summary is important.  Radiologists see many scans and sometimes results are misreported.
    TECHNIQUE: (Test scope and method)  Note details about the accuracy of the CT.  “These images do not constitute a diagnostic-quality CT….” The CT results help to precisely map or locate the PET results but cannot generate a diagnostic grade image.
    COMPARISON: (Other scans reviewed while looking at this one). “Report only (no image reviewed) from PET-CT 3/8/2013.  CT of chest and abdomen 8/22/17 (looked at image).”  A CT scan is normally performed first.  PETs follow and accuracy is enhanced if the radiologist has access to prior images. To improve access, have all your scans done at the same medical facility.
    FINDINGS: (The result) “…showed no convincing PET evidence of FDG-avid (fluorodeoxyglucose — radioactive tagged glucose seeking) recurrent or metastatic disease.” This is what we want to see in the first sentence.  Then, the radiologist peels back the onion with detail.  
    “There is mild heterogeneous hypermetabolism (diverse increased rate of metabolic activity)…with a few small superimposed foci (above the hypermetabolic area that is of particular interest)…more intense activity showing a maximum SUV of 3.5 (SUV — standardized uptake value)….When compared to [past reports] uptake…showed SUVs ranging from 2.6 to 2.9. This is strongly favored to be inflammatory.” Relief —this is my chronic pain site caused by 3 thoracic surgeries in the same location!  
    “A somewhat retractile appearing mass (drawn back into lung tissue)…in the left upper lobe is stable in size…This shows minimal uptake…and is most compatible with the site of treated tumor.” My CyeberKnife-fried tumor scar.  I do love precision radiation!
    What are concern ranges for SUV uptake? First, consider what is measured — cellular metabolic rate; more simply is demand for glucose, the fuel of metabolism.  Cells with high metabolism ingest more tagged glucose. The PET shows differences in consumption (uptake).  SUVs below 2.0 are normal.  SUVs above 2.0 are suspect but between 2.0 and 4.0, uptake could be from injury or inflammation.  Readings above 4.0 tend to be cancer but there can be other explanations. Higher than 4.0 is likely cancer, especially when paired with a CT find. Cancer demands glucose to fuel mitosis or growth by cellular division.  
    Get and keep copies of all your diagnostic imaging.  Keep track of the findings.  I use a spreadsheet to record date, location and indications.  Dr. Google is a great source for medical definitions. The best possible outcome for any scan is NED (no evidence of disease).  May NED be with you.
    Stay the course. 
  18. 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.
  19. Tom Galli
    I've survived a lot of medical treatment. The most sophisticated and creative was while in the care of an extraordinarily gifted, courageous and talented surgeon. We invited him and his wife to dinner to renew our acquaintance and review the bidding.  The dinner was memorable.
    I could launch into the details of my 8 surgical procedures performed by this brilliant man but that story is told elsewhere. Of more interest to this community is what are the indicators of brilliance in a surgeon?  Unlike general medicine or oncology, surgical encounter time is brief.  One can ask about reputation, but thoracic procedures are risky and outcomes are variable involving heart, lungs, vessels, transplants and a myriad of complex procedures to the engine compartment of the body.  Using my surgeon as a model, it might be useful to develop a means test of thoracic surgical competence that a survivor might use to evaluate suitability during the span of a short pre-surgical consultation.  Here is my list.
    Is your surgeon friendly?  Is this man or women one you’d enjoy having a coffee or a beer with?  Does conversation flow easily?  Does the surgeon respond to your elements of conversation?  Does he or she listen?  Do other practitioners or office staff enjoy being around him?  A surgeon that is pleasant is likely to be a surgeon that is sympathetic, benevolent and a true believer of the tenants of the Hippocratic Oath. Is your surgeon inquisitive? Surgery is a melding of art and science. The art is “what” to do and the science is “how” to do it. Thoracic surgeons are a small tribe that practice in a complex environment. When something new is discovered, your surgeon should be very interested in investigating it for application. If your surgeon already thinks all the “what” questions are answered, find another. Is your surgeon respectful? In your pre-surgical consultation, you ought to feel like the important one. Your medical condition needs to be acknowledged as important and your feelings, fear, anxiety, and uncertainty should to be taken into account.  If your surgeon doesn’t use your name or look at you or attempt to help you relax during the consultation, find another.  If your surgeon makes a grand entrance, surrounded by a posse of assistants, and talks to them about your case, find another quickly! Is your surgeon decisive? At the pre-surgical consult, there is one key decision to be made: operate or do not operate.  This ought to be made then and there. If your surgeon feels the need to discuss your case with others, find another.  There is so much uncertainty in lung cancer surgery and each encounter will require a decision. Your surgeon needs to come equipped for making decisions, alone. Is your surgeon acutely intelligent? Compose a non-surgical question on the surgeon's interest or hobbies ahead of the consultation. Listen for passion and detail that indicates sincere interest and evidence of accomplishment. Intelligence starts with curiosity and leads to ability to assimilate knowledge and use it in cross functional ways.  A surgeon with a photography interest would know depth of field (the f-stop setting on a camera) is analogous to layers in skin, tissue structure, and visual focus precision.  Photography concepts relate to surgery yet it is a diverse field of intellectual pursuit. Avoid those who are interested only in surgery or who say they don’t have time for anything in their life but surgery.     We had a wonderful reunion made even more special by the attendance of my daughter, son-in-law and granddaughter.  My daughter met my surgeon 15 years ago while I was near death. She is also a beneficiary of his skills.  Ten years after my surgeries, I asked my surgeon to help find a skilled brain surgeon to remove my daughter’s complex meningioma. He moved heaven and earth to do so. Add compassion to my list.
    Stay the course. 
  20. Tom Galli
    Using the words free and invaluable to characterize lung cancer medical care is a hard sell. I’ve seen so many scams promising this, that, and the other thing that deliver nothing more than a money pit.  So I was indeed skeptical when Dr. David S. Schrump introduced his National Cancer Institute Intramural cancer treatment program, at our April 2018 LUNGevity Summit, with the words “no cost to patients, including travel and lodging.”
    Why didn’t I know about this resource?  I’ve encountered so many newly diagnosed folks who had no or inadequate insurance and who had to forgo treatment because of financial concerns. Yet, there is a sophisticated, taxpayer funded, medical system that designs “unique to patient” protocols including surgery, radiation, chemotherapy, and newly emerging treatments. And, it is free! All patients at the NIH are on investigational protocols, including those who are receiving standard care, so that their tumor tissues, blood, etc can be used to develop new cancer therapies. Once a patient is enrolled onto a protocol, care is provided at no cost. There is no third party billing, deductables, etc.
    Then on the second summit day, I learned Dr. Schrump’s Surgical Oncology Team is developing unique vaccine-like immunotherapies using tumor material surgically removed from a patient — a tailored and individualized immunotherapy agent. In an ongoing vaccine study, Dr. Schrump’s team observed immune responses to lung cancer-associated proteins in 60% of patients; several responders have had unusually prolonged disease free-survivals, supporting further evaluation of the vaccine. Dr. Schrump hopes that personalized vaccines may one day be an alternative to adjuvant or post-surgical chemotherapy, the current standard of care. Much more work needs to be done to determine to feasibility and potential efficacy of this approach.
    Moreover, they are using aerosol delivery methods as alternatives to IV or oral administered drugs to increase the uptake of drugs into lung cancer cells, and “prime” them for attack by the immune system. Indeed, his presentation was filled with very innovative methods of attacking lung cancer with promising results.
    If you are an American and don’t have the financial resources for lung cancer treatment or if your medical team has run out of treatment ideas, contact the National Cancer Institute.  You don’t need a physician referral. Email jan.pappas@nih.gov, introduce yourself and your diagnosis stage and type and put your phone number in the email.  Free and invaluable may indeed be words appropriate to use in concert with lung cancer treatment.
  21. 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.
     

  22. 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.
  23. 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.
     
  24. Tom Galli
    The modern world is full of scams, lies, untruths, and junk science.  Indeed, for a lung cancer survivor or caregiver, finding truth about lung cancer in our Internet world of mis-information is extremely difficult.  How do we know what to believe?  Perhaps you've heard of Belle Gibson, the health food purveyor and wellness guru, who spent years convincing us she had a cure for cancer.  Don't know the story?  Read it here.  How did we buy into Gibson's claims?  How do we avoid another scam trap? Here is my list for sniffing out a phony lung cancer cure scam.
    1. Ignore anyone who broadcast-messages a cure for cancer.  No one discovering a cure to cancer will announce it on a daytime TV show, or a TV infomercial.  The person discussing the "cure" will more likely act and talk like a nerdy scientist rather than a TV or movie personality.  The announcement language will be hyper-technical, interspersed with statistical terms comparing this to that under a given circumstance. The announcement could be televised but the audience will be filled with scientists and physicians.  But before the telecast, there will be a series of journal articles discussing and critiquing the findings.  The announcement will likely follow the form and tenor of the CERN Higgs Boson "god particle" discovery.  Watch that coverage and mentally compare it to an episode of The Chew.  If you don't hear words like "the combined difference of five standard deviations", you are listening to a hoax.
    2. The cure announcement won't be a sales pitch.  Think of the biggest news event you've ever seen, say the announcement of 9-11.  Discovery of a cure to cancer will be bigger -- much, much bigger!  It will be a world-wide-headline-news story and will be announced by a government.  Following the announcement, there won't be a 1-800 number or world wide web address to buy the cure!  It won't be a pharmaceutical company announcement.  Yes, new drugs showing progression free survival improvement are announced in pharmaceutical company news releases, but these are clinical trial results for a new therapy, not a "cure" announcement. And recall what a new lung cancer treatment drug commercial looks and sounds like.  There are all these legal disclaimers, side-effect disclosures, and restrictions on taking the drug.  A lung cancer or any cancer cure won't be a commercial advertisement of a drug or treatment. It will be a celebration and the biggest news event of your lifetime!
    3. Be very wary of a dietary supplement touted as a cure.  Cancer is a disease of the human genome.  Each of us has the genetic predisposition to have every kind and type of cancer ever discovered. Science understands the genetic nature of the disease and a changes in diet or taking a dietary supplement does not change or effect our genetic make-up.  A change in diet to lose weight, avoid diabetes, or improve cardiovascular health is a good thing, but no one claims taking a dietary supplement or a change in diet cures diabetes, heart disease or cancer, except scam artists.  A healthy diet has many benefits; curing cancer is not one of them.
    4. Self-promoters touting heroic cancer survival stories are scammers.  If you want to read and believe heroic survival stories, they are in forums such as this one.  Our survival stories sell hope; they don't sell product.  No one here is seeking fame for surviving lung cancer.  Certainly, no one here is getting rich surviving this awful disease.  Real lung cancer patients know that cancer sucks, treatment sucks, scans suck, the whole process sucks.  No one here sits for a TV interview claiming to beat lung cancer by taking this, that or the other thing.  While the first rule to being successful in sales is to sell yourself,  we are not selling anything.  
    5. Social media promotion is a scam in the making.  Who is going to offer a product or treatment that cures cancer on social media -- a scam artist!  Social media likes and shares are not scientific peer reviews.  The Super Bowl Justin Timberlake selfie boy achieved overnight fame, but for what? Perhaps he could use that fame to sell tee shirts, but a lung cancer cure?  Seriously?  And be wary of news outlets who publicize these miracle cure announcements.  TV and newspapers sell scam promoters also.  They publicize sensationalism so a 30 second report on your 5 o'clock news of a wellness guru who discovered a cancer cure is what -- a scam!  Do you know of TV reporters with a PhDs in Microbiology or Pharmacology?  Where do they get the competency to evaluate scientific claims?  Here's the point; they don't care about scientific authenticity; they want to generate sensationalism.  Media sensationalism sells media, not cancer cures.  Social media clicks sell social media, not cancer treatments.  
    Lung cancer is a horrible disease.  Sadly, there are horrible people in this world who take advantage of our misfortune to rob us of time and money.  Only our vigilance and common sense can protect us.  Remember, there is no such thing as a cancer cure, yet!  When one is announced, the world will know and celebrate.
    Stay the course.
     
  25. 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.

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