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.
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.
Almost every lung cancer survivor has a positron emission tomography (PET) scan these days. Now, a PET is often given with a computerized axial tomography (CT) scan. The diagnostician is a radiologist; a discipline that does not write in lingua franca. What do the report words mean? Here is a summary of my August PET-CT to interpret radiology speak.
INDICATION: (Why am I getting this scan) “The patient…with non-small cell lung cancer of the right main bronchus diagnosed in 2003 status post pneumonectomy….He has undergone previous surgery for bronchopleural fistula repair…Chemotherapy last administered May 2006…Cyberknife therapy for recurrent disease in March 2007…He more recently has cough and chest discomfort.” That’s me, no doubt, but this summary is important. Radiologists see many scans and sometimes results are misreported.
TECHNIQUE: (Test scope and method) Note details about the accuracy of the CT. “These images do not constitute a diagnostic-quality CT….” The CT results help to precisely map or locate the PET results but cannot generate a diagnostic grade image.
COMPARISON: (Other scans reviewed while looking at this one). “Report only (no image reviewed) from PET-CT 3/8/2013. CT of chest and abdomen 8/22/17 (looked at image).” A CT scan is normally performed first. PETs follow and accuracy is enhanced if the radiologist has access to prior images. To improve access, have all your scans done at the same medical facility.
FINDINGS: (The result) “…showed no convincing PET evidence of FDG-avid (fluorodeoxyglucose — radioactive tagged glucose seeking) recurrent or metastatic disease.” This is what we want to see in the first sentence. Then, the radiologist peels back the onion with detail.
“There is mild heterogeneous hypermetabolism (diverse increased rate of metabolic activity)…with a few small superimposed foci (above the hypermetabolic area that is of particular interest)…more intense activity showing a maximum SUV of 3.5 (SUV — standardized uptake value)….When compared to [past reports] uptake…showed SUVs ranging from 2.6 to 2.9. This is strongly favored to be inflammatory.” Relief —this is my chronic pain site caused by 3 thoracic surgeries in the same location!
“A somewhat retractile appearing mass (drawn back into lung tissue)…in the left upper lobe is stable in size…This shows minimal uptake…and is most compatible with the site of treated tumor.” My CyeberKnife-fried tumor scar. I do love precision radiation!
What are concern ranges for SUV uptake? First, consider what is measured — cellular metabolic rate; more simply is demand for glucose, the fuel of metabolism. Cells with high metabolism ingest more tagged glucose. The PET shows differences in consumption (uptake). SUVs below 2.0 are normal. SUVs above 2.0 are suspect but between 2.0 and 4.0, uptake could be from injury or inflammation. Readings above 4.0 tend to be cancer but there can be other explanations. Higher than 4.0 is likely cancer, especially when paired with a CT find. Cancer demands glucose to fuel mitosis or growth by cellular division.
Get and keep copies of all your diagnostic imaging. Keep track of the findings. I use a spreadsheet to record date, location and indications. Dr. Google is a great source for medical definitions. The best possible outcome for any scan is NED (no evidence of disease). May NED be with you.
Stay the course.
A lady with lung cancer passed early this morning. I knew her well. She survived two surgeries claiming a lung, radiation, and many many infusions of chemotherapy. Indeed, her disease was being treated like diabetes or heart disease — a chronic but controlled condition.
Lung cancer did not claim her and death is not a celebratory event, but living a full and meaningful life despite lung cancer is indeed praiseworthy. In characterizing the lady’s life, full and meaningful are an enormous understatement.
In recalling our years together, I am struck by how few times we talked about lung cancer. We shared a disease but talked about stock shows, cars, fashion, movies, politics, family, travel, ranching, tomatoes, and friends. That she would not achieve NED didn’t bother her a bit. “I’ve got things to do and doing nothing ain’t gonna happen!”
I will morn her passing. I will also strive to emulate her lifestyle.
Stay the course.
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.
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 [email protected], 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.
"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.
“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.
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.
Stay the course.
The modern world is full of scams, lies, untruths, and junk science. Indeed, for a lung cancer survivor or caregiver, finding truth about lung cancer in our Internet world of mis-information is extremely difficult. How do we know what to believe? Perhaps you've heard of Belle Gibson, the health food purveyor and wellness guru, who spent years convincing us she had a cure for cancer. Don't know the story? Read it here. How did we buy into Gibson's claims? How do we avoid another scam trap? Here is my list for sniffing out a phony lung cancer cure scam.
1. Ignore anyone who broadcast-messages a cure for cancer. No one discovering a cure to cancer will announce it on a daytime TV show, or a TV infomercial. The person discussing the "cure" will more likely act and talk like a nerdy scientist rather than a TV or movie personality. The announcement language will be hyper-technical, interspersed with statistical terms comparing this to that under a given circumstance. The announcement could be televised but the audience will be filled with scientists and physicians. But before the telecast, there will be a series of journal articles discussing and critiquing the findings. The announcement will likely follow the form and tenor of the CERN Higgs Boson "god particle" discovery. Watch that coverage and mentally compare it to an episode of The Chew. If you don't hear words like "the combined difference of five standard deviations", you are listening to a hoax.
2. The cure announcement won't be a sales pitch. Think of the biggest news event you've ever seen, say the announcement of 9-11. Discovery of a cure to cancer will be bigger -- much, much bigger! It will be a world-wide-headline-news story and will be announced by a government. Following the announcement, there won't be a 1-800 number or world wide web address to buy the cure! It won't be a pharmaceutical company announcement. Yes, new drugs showing progression free survival improvement are announced in pharmaceutical company news releases, but these are clinical trial results for a new therapy, not a "cure" announcement. And recall what a new lung cancer treatment drug commercial looks and sounds like. There are all these legal disclaimers, side-effect disclosures, and restrictions on taking the drug. A lung cancer or any cancer cure won't be a commercial advertisement of a drug or treatment. It will be a celebration and the biggest news event of your lifetime!
3. Be very wary of a dietary supplement touted as a cure. Cancer is a disease of the human genome. Each of us has the genetic predisposition to have every kind and type of cancer ever discovered. Science understands the genetic nature of the disease and a changes in diet or taking a dietary supplement does not change or effect our genetic make-up. A change in diet to lose weight, avoid diabetes, or improve cardiovascular health is a good thing, but no one claims taking a dietary supplement or a change in diet cures diabetes, heart disease or cancer, except scam artists. A healthy diet has many benefits; curing cancer is not one of them.
4. Self-promoters touting heroic cancer survival stories are scammers. If you want to read and believe heroic survival stories, they are in forums such as this one. Our survival stories sell hope; they don't sell product. No one here is seeking fame for surviving lung cancer. Certainly, no one here is getting rich surviving this awful disease. Real lung cancer patients know that cancer sucks, treatment sucks, scans suck, the whole process sucks. No one here sits for a TV interview claiming to beat lung cancer by taking this, that or the other thing. While the first rule to being successful in sales is to sell yourself, we are not selling anything.
5. Social media promotion is a scam in the making. Who is going to offer a product or treatment that cures cancer on social media -- a scam artist! Social media likes and shares are not scientific peer reviews. The Super Bowl Justin Timberlake selfie boy achieved overnight fame, but for what? Perhaps he could use that fame to sell tee shirts, but a lung cancer cure? Seriously? And be wary of news outlets who publicize these miracle cure announcements. TV and newspapers sell scam promoters also. They publicize sensationalism so a 30 second report on your 5 o'clock news of a wellness guru who discovered a cancer cure is what -- a scam! Do you know of TV reporters with a PhDs in Microbiology or Pharmacology? Where do they get the competency to evaluate scientific claims? Here's the point; they don't care about scientific authenticity; they want to generate sensationalism. Media sensationalism sells media, not cancer cures. Social media clicks sell social media, not cancer treatments.
Lung cancer is a horrible disease. Sadly, there are horrible people in this world who take advantage of our misfortune to rob us of time and money. Only our vigilance and common sense can protect us. Remember, there is no such thing as a cancer cure, yet! When one is announced, the world will know and celebrate.
Stay the course.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
Perhaps you’ve heard? The federal government is a large insurance business with a standing army. Social Security is insurance — a specific kind of insurance called an annuity. The insured and employer pay premiums every month to fund a defined benefit at a specified year (normally your federally mandated retirement year). Everything is peachy-keen till a disability affects work because one has late stage lung cancer. And, when a lung cancer survivor files for disability, allowed by law and regulation, the federal government almost always disapproves. So, here are some suggestions for obtaining disability benefits by disapproval.
1. Expect to be Disapproved. I know a lot of folks with lung cancer. Among this population, only one was approved on initial application. He passed before he received his first benefit check. My company provided disability insurance carrier filed my first application. I had an unresolved bronchopleural fistula after a pneumonectomy that required a second and third surgery and indications of tumors metastasized to my remaining lung. My claim, filed by a former Social Security claims adjuster, was disapproved.
2. Involve Your Doctors. The disability application requires you to disclose all your physicians and medical providers. Then, the administration asks for medical records, reports and observations. Doctors are busy folks; oncologists are bombarded by SSA requests for information, and for good reason. Late-stage lung cancer (including treatment and side-effects) is often disabling. Inform your medical providers of your application and ask them to help by responding to the request for information.
3. Complete the Application. The Social Security Administration is a bureaucracy. Bureaucracies love to find “nits” in applications and return with some very vague description of the problem. This delays a decision and delays payment, and these are typical insurance company behaviors. Read every word of the disability application process (it is all online at www.ssa.gov) and check your application closely to ensure it is complete and error free. Have several family members check it also after reading the application instructions. Ensure you completely describe your symptoms including those caused by side-effects. Also, completely describe how these symptoms affect your ability to stand, sit, walk, bend over, think, concentrate, and etc. (Hint - read the criteria that will be used to determine your disability finding and use those words as descriptors).
4. Understand the Fine Print. There is payment delay: six full months after the date of disability (date shown on claim approval letter). Depending on other income sources, payments may be taxable. You are not found to be permanently disabled. Regulations allow a review of your status after start of disability payments. It is not a good idea to join an adult softball team while receiving disability payments! You are not eligible for Medicare until 24 months after receipt of first disability payment. Your disability payment will be less than your full retirement benefit, and when you reach retirement age, your retirement benefit will not be increased.
5. Lawyering Up. Filing the initial disability application online is a good idea, as long as it is properly completed and supported by doctor reports and observations. But when denied, it is time to level the playing field and retain a lawyer. Not any lawyer, but a law practice that specializes in Social Security Disability appeals. By law, they cannot charge you for their services. They collect fees directly from the Administration if an administrative law judge approves your appeal. And, most important, they know what they are doing and it is in their financial interest to do a good job on your appeal!
The disability process is deliberate, lengthy and frustrating. Like lung cancer, success involves persistence. Insurance companies don’t relish paying claims and every approved disability claim turns a premium into a disbursement. But, Social Security is insurance with disability payment provisions that you pay for! If you can’t work, apply, appeal and persist!
Stay the course.
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.
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.
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.