“When I think back” on Kodak Radiographic x-ray film, exposed film was sent out for development. Then machines were invented to develop film at the clinic. Today the film is gone. With a nod to Paul Simon, mama took my Kodachrome away. But, we still have radiation. There is a lot of press about the harm of low dose CT scans with some asserting a risk of radiation induced cancer from yearly scans. Let’s take a closer look at radiation with the aim of achieving an unbiased understanding.
Meet the sievert (Sv) and his much smaller cousin the millisievert (mSv). First, understand that 1 Sv is a thousand times larger than 1 mSv. A sievert (and millisievert) is a derived unit of ionizing radiation dose (warning ambiguous scientific definition). That means it is a calculated approximation of the health effect of ionizing radiation on the human body. Why is it an approximation? Because of uncertainty in type, strength and duration of radiation, differences from human to human, and perhaps most important, the lack of actual test data on deliberate radiation exposure to humans. So, let’s call it a very good guess of the harm that radiation does to a person.
First explore very harmful radiation—say sieverts received during a thermonuclear explosion. How much is a lot, what’s the harm, and how lethal is it? The table answers the question.
It goes without saying that exposures greater than 30 Sv yield toast, literally and figuratively! Notice the lethality uncertainty. That results from the derived nature of the sievert. But, 1 Sv is radiation to be avoided. Who wants a 5-percent probability of dying? Moreover, literature cites a 5.5-percent chance of developing cancer from exposure to a 1 Sv dose.
Now lets compare and contrast the millisieverts (remember, 1,000 times smaller) received from common ionizing radiation for medical purposes. The table has the details.
Pay close attention to the third column of the table. Single doses of ionizing radiation for all these medical procedures are very small. Think of it this way, you’d need to have 1,000 x-rays, all at once, to approach the 1 Sv level of concern. Notice also how small the low dose CT rate is compared to the normal chest CT. The low dose CT screening guideline recommends the test for those 55 to 80 with a 30-pack year smoking history, and current smokers or those quit within the past 15 years. Given these criteria and assuming one receives a low dose CT every year starting at 55 and living to be 100, the total Sv received would amount to 0.07. Yes there is radiation, but the possibility of it causing radiation induced cancer is very-very-very small. Late-stage diagnosed lung cancer presents a much higher life-threatening risk.
The US Nuclear Regulatory Commission is on record stating “public health data do not absolutely establish the occurrence of cancer following exposure to low doses and dose rates below about 100 mSV.” Applying this level of safety threshold: “Mama don’t take my Kodachrome" (and low dose CT scans) away.
Stay the course.
Today, in the United States, we celebrate the holiday of Thanksgiving. Our first president, George Washington, called for an official “day of public thanksgiving and prayer” in 1789 and although the Congress heartily agreed, the proclamation was lost in the bureaucratic press of politics. It fell to Abraham Lincoln to rekindle the Thanksgiving Holiday shortly after the pivotal battle of our Civil War—Gettysburg in 1863. Thus in the mist of warfare and uncertainty, a holiday dedicated to thankfulness was founded.
Today, we gather to celebrate life and thank the Almighty for health and bounty. Thankfulness for me, a lung cancer survivor, is particularly significant for I have been blessed to witness one of life’s most memorable events: birth of a first grandchild.
During my recent visit, while cradling her in my arms, I felt a connection with my infant-offspring. As the picture captures, Charlett Emilyrose was looking intently into my eyes, unusual for a three-week old baby. She held my gaze for the longest time as if painting a mental portrait. Her grandfather was joyous and delighted and thankful.
This touching moment is unfortunately rare for those with lung cancer. By statistical expression, Thanksgiving 2005 should have been my last celebration. Yet, nearing my 13th year of surviving a lung cancer diagnosis, I am so thankful to have witnessed the birth of a grandchild. Providence has indeed showered me with gifts.
So today I give thanks for survival and in the spirit of George Washington’s original scope of holiday, I pray all who suffer the effects of this horrid disease experience the joy and delight I felt as I held my granddaughter in my arms. Happy Thanksgiving all.
Stay the course.
I am not a statistics wizard; an engineer, I value the predictive power of statistics. Indeed, if one can precisely control variables, a statistics-based prediction of the future is remarkably accurate. The joy of predicting end strength for a new carbon-nanotube concrete mix design melts the heart of this engineer. But, concrete is a thing with but 4 variables to control. Human beings have perhaps millions of variables, thus predictions about people are vastly more complicated and inaccurate.
Statistically-based predictive power has a foreboding downside. The methodology is used by the medical profession to forecast life after diagnosis with late-stage lung cancer. Unfortunately, I have first-hand experience once predicted with but 6 months of remaining life nearly 13 years ago! My doom was forecasted with high statistical confidence and for a while, I believed it.
In the dwell time between treatments, I searched for methods used to generate my projection of demise. Each patient’s type, stage, age, ethnicity, race, and date of diagnosis are reported to the National Cancer Institute on diagnosis. Deaths are also reported but not the cause of death. Nothing is captured on complicating health problems like cardio-pulmonary disease, diabetes, or other life-threatening maladies. The predictive data set appeared slim and uncontrolled.
My doom and resulting gloom waned while mindlessly searching web pages for statistical good news. Ammunition in the form of a powerful essay by the noted Harvard biologist Stephen Jay Gould – “The Median Isn’t The Message” – contained: “…leads us to view statistical measures of central tendency [median or mean] wrongly, indeed opposite to the appropriate interpretation in our actual world of variation, shadings, and continua.”
This meant the statistician seeks to combine data and express it as a median or mean to predict or explain. I’d forgotten that I was one inaccurate variable in a “world of variation.” One data point used to calculate a central tendency of survival for about 1.4 million Americans diagnosed in 2004. I might be the one holding the right-shifted curve from intersection with the axis of doom.
Gould survived 20-years beyond his late-stage, nearly always fatal, abdominal mesothelioma cancer diagnosis. Ironically, he passed after contracting another form of unrelated cancer. A distinguished scientist, Gould eloquently described the limits of science and statistics by suggesting that “a sanguine personality” might be the best prescription for success against cancer. There is always hope, with high confidence. Listen to his essay here.
Stay the course.
Get your copy of Scanziety here https://www.amazon.com/Scanziety-Retrospection-Lung-Cancer-Survivor-ebook/dp/B01JMTX0LU
Amazon Kindle Royalties Donated to LUNGevity.org During November:"I am not a doctor; indeed, I possess little medical knowledge. I am, however, a very experienced and long-tenured lung cancer patient. That gives me a unique perspective on the disease that kills more people—many times more—than any other type of cancer. I do not intend to fill this story with statistics. They are readily available from any number of reputable resources. I have a firm belief, however, that lung cancer research is poorly funded because lung cancer is considered a self-induced disease.
We speak of those who suffer from or succumb to cancer as having engaged in battle; but in battle, one can choose to retreat. When diagnosed with cancer, the only choices are treatment or death. Statistically for lung cancer patients, the battle for life through treatment more often than not is lost.
Treatment borders on barbaric torture that is endured repetitively, with uncertain outcomes and with death looming closely. I claim no medals for bravery. I was, and still am to some degree, overwhelmed by fear. While in active chemotherapy, the time between a diagnostic scan and results was a nightmare to endure; thus, my name for this experience: Scanziety. Several times, my treatment nearly killed me. I survived, not knowing how or why. My survival provides hope for those who suffer, particularly for the 230,000 Americans who will receive a lung cancer diagnosis this year. If I can survive, so can you."
Stay the course.
Get your copy of Scanziety here https://www.amazon.com/Scanziety-Retrospection-Lung-Cancer-Survivor-ebook/dp/B01JMTX0LU
I will donate all Scanziety Amazon Kindle Store sale royalties for the Month of November to LUNGevity.org to support much needed research. I wrote for the book for three reasons. First among them is “to raise a call to arms for funding lung cancer research.” Help me raise the call to arms! Read a book about surviving lung cancer and donate to sponsor research to find, fix and finish lung cancer.
Stay the course.
Get your copy of Scanziety here https://www.amazon.com/Scanziety-Retrospection-Lung-Cancer-Survivor-ebook/dp/B01JMTX0LU
Meet Charlett Emilyrose Wilson, my first grandchild. Her parents, daughter Melissa and son-in-law Bill, are overjoyed. I am ecstatic! Proud would be a vast understatement!
Charlett was born 12-years, 8-months, and 13-days after my diagnosis with NSCLC. I celebrate this joyful milestone in my life for but one reason. If I can live, so can you.
Stay the course.
The other day, in conversation with a newly minted medical school graduate, he told me low-dose computed tomography (LDCT) was dangerous. Dangerous! If LDCT is dangerous, what is late discovery of lung cancer? He nearly fainted when I told him I had perhaps more than 40 CT scans in my treatment history, telling me I was a candidate for radiation induced cancer. It didn’t seem to register that I was a candidate for extinction by lung cancer.
We are told the only effective way of treating our disease is early discovery. Few dispute this point. Why then would the Center for Medicare & Medicaid Services (CMS) want to reduce reimbursement for low-dose computed tomography (LDCT) screening by more than 40 percent? The Society of Thoracic Surgeons is concerned calling LDCT a “game changer in the battle against lung cancer.”
Then I read: “Family physicians lack sufficient knowledge about recommendations for LDCT." Moreover, Doctors Patz and Chen, professors of radiology at Duke, say: “Not screening patients annually could save millions in health care costs and spare patients the radiation exposure and downstream effects of false positive screenings.” Something is very wrong. We have an effective tool for early discovery of life-threatening disease when not discovered early, and there is a campaign mounted against using it.
CMS is a federal government-funded agency. In government programs there is a big difference between savings (cash you can put in the bank) and avoidance (cash spent elsewhere). CMS money is appropriated in broad categories. Once appropriated, fiscal managers move money around to address other needs or requirements. Appropriated federal funds are almost never returned to the Treasury. So the reduced funding for LDCT will be a bill payer for some other CMS program. No money is saved; it is spent on something else.
Further, when making a valid cost avoidance argument, one must identify all cost. For example, the professors of radiology predicting savings for reduced screening do not identify the millions of dollars of increased cost for treating late-stage-diagnosed lung cancer. A cost avoided almost always results in cost added somewhere else, and without disclosing added burden, professionals are making very unprofessional arguments.
Lastly, and most importantly, no one advocating reducing LDCT is considering the most important impact—suffering. There is a vast amount with late-stage diagnosis. Suffering affects more than the lung cancer survivor; it devastates families. While real and detrimental, suffering defies quantification in dollars. Several hundreds-of-thousands of us in the United States will suffer a late-stage lung cancer diagnosis this year. LDCT can eliminate some of this.
In this light, it is hard to understand the assault against using LDCT to find, fix, and finish lung cancer!
Stay the course.
I just completed a most unusual intellectual assignment—evaluating molecular biology and pathobiology research grant applications. When I learned of my assignment, I wondered how I’d make the academic stretch from civil engineer to biologist.
Sure, on a good day, I can spell pathobiology correctly without aid of a spell checker. Why would someone deliberately assign me to review molecular biology stuff? I’d forgotten. I was a lung cancer survivor and expert, not by education but by experience. Those who survive have relevant first-hand experience that can’t be learned in any university. Some research grant institutions require a “consumer” evaluator to assess the impact of applications. In the case of lung cancer, the consumer is a lung cancer survivor.
My experience came in handy. We were asked to score the impact of each proposal. Even basic science research has discernible impacts. Knowing, for example, Squamous Cell Lung Cancer does not benefit from adenocarcinoma-targeted therapy enabled me to assign higher impact scores to proposals aimed at immunotherapy advances against Squamous Cell Lung Cancer. Might scientific researchers know this? Perhaps, but I know it; I live with it every day.
In a pre-evaluation conference, a veteran consumer evaluator suggested I start a technical term dictionary, capturing definitions of technical terms in a spreadsheet for easy reference. My biology vocabulary is substantially expanded by understanding hypermethylation, epigenetic, methylation, and cytosine to name a few. Technology makes understanding these terms simple—Google the term and add the word “definition”.
Modern technology astounds me. I was a “slide rule jockey” through college going blind multiplying, dividing, and deriving roots and powers. But it was slide-squint-copy, and rinse and repeat. Now one Googles up the equation, substitutes values, and presses enter! Try it yourself. Google “what is the square root of 2356875.6” Simple!
So computer-aided understanding allows even a novice to discern the complexities of biological expression. And, our participation in evaluating research is essential. Why? Because there is a vast difference between experiments performed in vitro vice those performed in vivo. We are the in vivo! We should be a check and balance before a path of discovery is established that subjects us to poking, prodding, discomfort, or worse. After all, we are not concrete.
Stay the course.
LUNG CANCER ACCOUNTING—A METHOD TO WIN THE BILLING BATTLE
Treatment for lung cancer was, hands-down, the hardest thing I ever endured. What’s the second hardest? Without a doubt, it is settling treatment bills. After nearly 13 years, I still get them. Despite all of the advances in information technology, medical invoices, including medical insurance invoices, are the most unnecessarily complex documents ever created. Their level of useless intricacy bests even lawyer generated minutiae.
I've got a method, a foolproof way to organize, understand, and pay. This avoids both double payment and long periods on hold listening to elevator music while waiting to talk to someone who knows absolutely nothing about your problem. Here are my ten steps to winning the lung cancer treatment billing battle.
1. At your time of treatment, ask the treating physician to tell you the treatment code or codes to be reported on your medical record. Write this information down, including the date of service (DOS) for each code. A smart phone calendar application is the perfect way to capture this vital information. Just put the codes on the calendar.
2. Also ask if a third party provider (someone outside your doctor’s practice) will provide lab or diagnostic work. Get the names of these providers and treatment codes used for their services.
3. Build a record of information for data captured in steps 1 & 2. I use a computer spreadsheet but an old-fashioned pencil and paper ledger will work just fine. Here’s an example:
DOS - Date of Service, PC - Procedure Code, PROV - Provider, MS - My Share, PD BY - Paid By, PD DT - Paid Date
4. As bills come in, add new information to the spreadsheet. I record as I open so I don’t miss anything. Highlight the DOS and PC on each bill with a bright colored highlighter, then staple or paper clip together by DOS.
5. On arrival of your insurance statement, update your spreadsheet adding INS ALOW, INS PD and MS. Don’t worry about amounts insurance reduced or denied. If your provider accepts your insurance carrier, they must abide by insurance allowable charges. Attach the insurance claim to bills by DOS. You may need to make copies because insurance claims often cover multiple DOS.
6. Do not pay anything to anyone (exception COPAY) until your insurance pays. Then only pay (MS) and complete PD BY and PD DT on your spreadsheet.
7. Keep all this paperwork together in a single manila folder. I keep mine on my desk along with a supply of paper and binder clips to keep things together.
8. I use this method for hospital bills but there could be pages of procedure codes covering several dates of service. Make an entry for each DOS and record all the PCs per DOS. You’ll need to mine this information from the statement because hospital visits often consist of many dozens of PCs. Consulting doctors who treat you in the hospital must cite DOS and PC on their invoice. You may never meet these doctors (radiologist, pathologist and etc) but you’ll track them to the hospital stay by matching up the DOS.
9. Hospital invoices take months to arrive while attending physician invoices take weeks. Match them up and wait for the insurance claim before paying anyone.
10. This method simplifies claiming federal income tax medical expense deduction. Come tax time, filing will be a snap.
I’ve paid thousands of medical bills. The only thing worse than the assault of bills is assault by bill collector. In the days before organization, I’d hunt through piles of paperwork and bank records trying to find information on a bill I know I paid. Not being organized means I likely paid twice just to stop the telephone calls. I recall the day I received a bill collector call after I stood my method up. My data shut him down. I went from hello-to-cancelled-check-to-good-by in seconds. It felt so good!
Stay the course.
Chances are you pay attention to new treatment developments. I was aimlessly scrolling through a social media app when I happened on a dramatic interview. Everything was staged to look legit. The interviewer looked like a TV reporter, the background scene looked like a doctor’s office, and the set up question “doctor, let me talk about cancer a little bit” got my attention.
The camera changes views to the doctor as the reporter says, “what are some of the things you’ve seen in terms of your patients?” Then we see the doctor. He looks like a doctor, well dressed with a confident assuring voice. He changes the subject saying “a better thing to talk about“ and his name and titles flash and disappear on the screen: Peter Glidden, BS, ND (note not MD).
He cited an unnamed study published in the Journal of Clinical Oncology in 1994, a 12-year program that looked at adults who had developed cancer, further clarifying adult cancer as “the main type of cancer we get here in the United States.” He described the study as a “meta analysis of people all around the world for 12 years who were treated with chemo…and the result?”
“Ninety-seven percent of the time chemotherapy does not work.” Dramatically and shaking his head for emphasis, he repeats the same statement, then he asks “so why is it still used?” “Money”, he answers. “Chemotherapeutic drugs are the only classification of drugs that the prescribing doctor gets a direct cut of…the only reason chemotherapy is used is because doctors make money from it…period…it doesn’t work…97-percent of the time.”
Continuing, he says: “We have lost the war on cancer in the United States…why…when you try to bring a reductionistic phenomena like drugs and surgery to bear on a holistic phenomena, you will completely miss the boat each and every time.” Further he emphatically states, “if every girl in this country took 200-micrograms of Selenium, in one generation, we’d eliminate breast cancer by 82%; now why aren’t we doing that?”
So, let’s take a deep dive into Peter Glidden’s claims and supporting data. First, consider his probability predictions: 97-percent of the time chemo doesn’t work and 200-micrograms of Selenium eliminates breast cancer by 82% in one generation. These predictions sound authentic, like there was a test to determine outcomes. But, no scientist, doctor, or engineer would ever describe a statistically based probability outcome using just a naked percentage.
There is always uncertainty and professionals bound uncertainty with a confidence level. An engineer might say that concrete will achieve a 6,000 psi end strength but will disclose the testing sample size, mean, standard deviation and confidence level that justify the end strength statement. Test results never exactly replicate. The end strength will vary between some acceptable range. But Glidden’s claim is precisely 97-percent. It is unsupported. Moreover, it is debunked in the literature. Here is a good on-line summary about the unsupported claim .
But, to even make a 97-percent statement, one would need to know, with certainty, the cause of death of each of the thousands of people who had chemotherapy. Were autopsies performed? Might some have died of natural causes, traffic accidents or other illnesses? A statistically significant record of “meta data of people all around the world treated for 12 years” does not exist. Do they have data in the Fiji Islands, Kenya, Somalia, Bangladesh or North Korea?
How about his 200-microgram Selenium cure for breast cancer? He says it would eliminate breast cancer by 82% in one generation. I’m not even sure I know what eliminate by 82-percent means. Think about how imprecise this claim is. How long is one generation? How did you determine it was 82%? How sure are you it is 82%? I could drive a main battle tank through the gates of this claim’s imprecision!
Now to his claim that cancer is not a reductionistic phenomena, suggesting that drugs or surgery misses the boat “each and every time.” I’m one of those “each and every time” and my survival from drugs and surgery proves him wrong. Does naturopathic treatment actually cure cancer? I don’t know but neither does Gladden. Here is some interesting reading about Naturopathic Doctors.
Peter Glidden’s video extolling a simple nutritional supplement as a cancer cure is compelling. He is dramatic, confident and to a diagnosed lung cancer patient facing an arduous regime of chemotherapy, persuasive. Why bother with the chemotherapy if I can take Selenium and cure my cancer?
If you are reading this, you or someone you care about has lung cancer. Time is of the essence. You have but three choices: do nothing, conventional medicine, and holistic medicine or some derivative of the same. Do nothing is the least expensive alternative. You pay nothing and might live. Miracles happen.
Conventional medicine and holistic medicine will cost your money. How do I make the choice? I put my money on science-based conventional medicine treatment because treatment outcomes are repeatable. Mark Twain said it best: “It ain’t what you don’t know that gets you into trouble. It’s what you know for sure that just ain’t so.” Gladden is trying really hard to convince us he’s 97-percent sure chemo doesn’t work. It just ain’t so.
Stay the course.
The summer Olympics kindles an unpleasant anniversary. I was in hospital recovering from a failed bronchopleural fistula surgery complicated by pulmonary embolism, further complicated by pneumonia, and then aspirational pneumonia. After surgical mayhem and ensuing coma, I settled into a nil per os or NPO recovery from a uncooperative epiglottis. July, August, and early September of 2004 were clearly the worst days of my life. The only joy was watching Katie Couric’s daytime TV Olympic broadcast from Athens. Two weeks of Olympic distraction amid repetitive admissions to the ICU as my doctors, nurses, and respiratory technicians struggled to keep me alive.
I don’t have specific memories of the games or any athlete. I can only recall the TV setting for Couric’s broadcast -- a shoreline location framed by Greek coastal mountains in the background and the deepest blue ocean I’ve ever seen. I’d wait for her show to come on and the camera to pan along breathtaking vistas while smelling coffee and food deliveries. I longed for so many things in that time. The smell of hospital-grade coffee was so tantalizing, it almost undid me. Till I met the hospital speech pathologist. She delivered the undoing.
Lung cancer patients learn a lot about hospitals. Doctors, excepting surgeons and anesthesiologists, do very little hands on patient care. This is the realm of nurses and medical technicians. But, who treated my lazy epiglottis -- a speech pathologist. A young woman, as I can recall, small in stature but with the confidence and swagger of an army SERGEANT MAJOR.
For those not acquainted with a sergeant major, it is best you not cultivate a relationship. They make the army THE ARMY. They are not nice, friendly, kind or cuddly. They are confident, demanding, curt, and irascible, in the extreme! My speech pathologist was the hospital’s SERGEANT MAJOR. She chewed out my surgeon for slipping me a cough drop. “Can’t you read the NPO sign”, she barked in a voice that made doc jump out of his skin. The ENT doc who scoped my defective epiglottis deconflicted his visits to stay out of her range.
She was the only one in the major medical center who knew anything about treating a uncooperative epiglottis? And, like army sergeants major, she was a taskmaster. Indeed talking (screaming) was the therapy. She wrote out weird, difficult, nearly unpronounceable guttural sounds that I had to recite despite the discomfort of a nose-to-stomach feeding tube. She appeared 4 times-per-day to drill me, then often 2 or more surprise visits to ensure I was properly bellowing. This guttural workout, combined swallowed-thickened-liquid observed by a timid radiologist manning a fluoroscope in the presence of the sergeant major, lasted nearly a month. But it worked.
The 2016 Olympics are in Rio, but the games take me back to Athens and my speech pathologist sergeant major. Thank you Sergeant Major!
Stay the course.
“Terminal stage IV lung cancer patient miraculously cured by cannabis oil.” “Frankincense oil kills cancer cells while boosting immune system.” “The real reason pharma companies hate medical marijuana is because it works.” If you are a lung cancer survivor, you’ve read these pronouncements. Hopefully, you don’t believe them. The purveyors of miracle cures are so persuasive that some people avoid conventional treatment and rely instead on the unconventional.
I remember my frantic web search for treatments after diagnosis. I explored conventional methods and learned about lots of downside and little upside. Reading the benefits of aromatherapy, guaranteed to cure my lung cancer by simply breathing a fragrant substance, was so appealing. Then as others learned of my diagnosis, I was bombarded by emails suggesting holistic medicine, Breuss diet, and magnetic therapy, to name a few. All that need be done to cure my lung cancer was move a powerful magnet over my chest for 30 minutes a day! Of course, one needed to spend thousands of dollars to purchase the special magnet but it was a money-back guaranteed cure.
There are miracles. These are medically documented instances where cancer stopped growing and spreading without treatment. But those touting magnets, cannabis oil, or a multitude of other treatments, methods, or substances (check Wikipedia’s list of unproven and disproven cancer treatments) are selling miracles. A miracle, in case you are wondering, is an event that defies explanation. No one knows why, including the seller of miracle cures.
When stricken by lung cancer, time is of the essence. We are often diagnosed at late stage and effective treatment must be prompt. Consuming time to undergo Miracle Mineral Supplement or Orthomolecular Medicine at great expense eats into this now precious time. Here are three tests one can apply to sniff out a phony cure: (i) drugs and procedures not FDA approved; (ii) drugs and treatments not covered by insurance, and (iii) the patient needs to pay large amounts of cash in advance of receiving treatments. Oh, and check out Quackwatch.
Our world is plagued by conspiracy as in: “big pharma has a cure but is withholding it from the market to boost profits.” Sure! Think about it. A publicly traded corporation has a cure for cancer and is not selling it—that would never happen. Recall how quickly we learned of Cuba’s cancer vaccine, and Governor Cuomo’s ex-officio trip to Cuba before restoration of diplomatic relations to negotiate putting the vaccine under accelerated FDA testing. A sure-thing cancer cure would be front page news on every paper around the world!
Oncology is a medical discipline founded on science and grounded by rigorous studies that are openly published and reviewed by doctors and scientists around the world. New treatment and diagnostic methods are well vetted to ensure both safety and effectiveness. An oncologist dedicates his or her life to treating people with cancer. When a board-certified oncologist tells me about a miracle lung cancer cure, I’ll believe it.
Till then, it walks like a duck.
Stay the course.
I’m reading of a Yale University study that advocates we choose primary care physicians by testing their political views. It is political open season and medical reporters want to join in the feeding frenzy. The danger is some will believe a political test (views on motorcycle helmets, pot smoking and firearms to name a few) is necessary physician competency criteria, especially since the test is aimed at our closest and most important connection to the medical system—the general practitioner.
Although medical specialists (surgery and oncology) treat our lung cancer, we often develop illness unrelated to cancer, or just as likely, a side-effect runs wild. So a general practitioner (GP) is a very important part of our treatment team. Presuming you just realized you need one, what are factors a lung cancer survivor should consider in selecting a GP? Here is my list.
A Good Listener. Does your GP listen? This trait is essential for we have a serious ailment with complex symptoms. During chemotherapy, I didn’t have one symptomatic complaint, I had many and they overlapped and changed day-to-day. A listening GP will hear you out, then asks clarifying questions about symptoms before launching into an exam or grabbing the prescription tablet.
Off The Clock. Does your session seem rushed? Some I know complain their doctor is “on the clock” like a game show contestant during consultation. That’s not good. Part of the consultation should be reviewing the reports of specialists involved in your cancer treatment. And, questions should arise after reports and test results are digested. A proper review with understanding takes time, not a beat the clock contest.
Renew Specialist Prescribed Medications. Murphy’s Law of medicine is your nausea medication runs out just when your oncologist is booked solid. Do you have a GP that will come to the prescription rescue? Some doctors don’t want to intrude on practice privileges of other doctors. That may be a fine philosophy but when you are suffering and a simple renewal script solves the problem, your GP ought to write the script. This is a good question to ask when interviewing a prospective GP.
Cancer Aware. In lung cancer treatment, there are medical treatment effects—say radiation burns; medical side effects—nausea, pain, numbness; and related medical problems—depression, chest infections and even common colds. Your GP should understand the complexity that a simple chest cold might mean to a lung cancer survivor. Questions and observations to ferret out depression is an important diagnostic role and treatment or referral are essential.
Known and Respected. My GP was the quarterback of my treatment team. He selected the players (specialists), monitored their treatment, and intervened to steer the team to a solution that saved my life. Your GP needs to know practitioners and be able to influence their actions when medical timidity breaks out. That speaks to a seasoned professional well known in the local medical community.
Politics and medicine should be like oil and water—never to mix. Medical doctors have a higher calling and abide by the Hippocratic Oath. They swear to share medical knowledge, act always to benefit the sick, and to treat those ill warmly with sympathy and understanding. In stark contrast, I can name quite a few politicians who forgot taking an oath of office the instant after administration.
Baseball is a game that requires patient players and fans. Like lung cancer treatment, there is a lot of waiting for something to happen. Also like lung cancer, the game is unpredictable. A single pitch can change the outcome of a game like a single cell can change the outcome of treatment. And like lung cancer, baseball has many uncertainties and these are defined by odds. The best hitters succeed a little better than one in three times; the best teams winning about six in ten games. Baseball players need to persevere against low odds of success to achieve victory. So do lung cancer patients.
A lung cancer diagnosis is devastating. Recurrence after treatment is common and traumatizing. We ought to prepare for the distress of recurrence. Treatment, even for those diagnosed at early stage, is not likely to be a walk-off home run. I was not prepared for treatment failure. How common is recurrence?
A National Cancer Institute study suggests about 33 percent of stage IA and IB patients experience a reoccurrence. Up to 66 percent of stage IIA, IIB, or IIIA experience a reoccurrence. Interestingly, these percentages are virtually identical for both adenocarcinoma and squamous cell lung cancers. What about stage IIIB or IV disease? The study reports recurrence about half that of lower stages but suggests this is due to competing risk of mortality.
Including surgery, my treatment success average was a dismal 1 for 5. That translates to a baseball batting average of .200, yielding a quick trip to the minor leagues. I had four recurrences after no evidence of disease (NED) treatments. We didn’t know perseverance was a requirement and we were not prepared.
How should we prepare? Here is what I didn’t do. Have a frank conversation with my oncologist seeking information on recurrence likelihood. Share this information with my family to ensure they were prepared for bad news. Finally, celebrate my NED state by fully engaging in life. NED is that extra life treatment buys and we did not take maximum advantage of it.
A sidebar benefit of surviving is accumulating lessons learned. I now completely understand that lung cancer is a persistent malady that is difficult to eradicate with unpredictable treatment outcomes. Like the best baseball players, we need to take our turn at each new treatment with a fresh perspective, forgetting our last experience and striving only to put the ball in play and arrest our disease.
Stay the course.
“Squamous cell cancer offers distinct therapeutic challenges by virtue of presentation in older patients, its physical location in the chest, pattern of metastasis and association with comorbidities that can compromise treatment delivery and exacerbate toxicity.” This quote is from the article Targeted Therapy for Advanced Squamous Cell Lung Cancer.
When diagnosed, almost 13 years ago, I didn’t realize lung cancer had types. Pathologists visually classify lung cancer cells seen under a microscope as small cell and non-small cell. From this simple delineation, further classification gets complicated introducing sub-type terms of adenocarcinoma, squamous cell and large cell. Large cell as a type of non-small cell? I recall dwelling on the large cell moniker and finally concluding a non-small cell can be a large cell.
I remember the emergency room physician telling me I was lucky; my form of lung cancer was treatable compared to the other type. He didn’t say small cell, but I think that is what he meant. Indeed about 15-percent of us suffer from this nasty presentation that metastasizes rapidly.
Adenocarcinoma sub-subtypes have morphed into an alphanumeric soup as research at the genetic level identifies biomarker profiles, mutations in an individual’s lung cancer that can serve as attack portals into the cancer cell by targeted therapy. Now adenocarcinoma survivors use terms like ALK, KRAS, EGFR and PIK3CA to further classify their disease and new targeted treatment drugs emerge to attack, like mutant Ninja Turtles! Some of these are so effective, they’ve moved to first-line therapy.
Adenocarcinoma describes a type of cancer that occurs in the mucus-secreting glands throughout the body. Lungs naturally have an abundance of these glands but so do the prostrate, pancreas, and intestines. Squamous cells derive their name from the Latin squama meaning scale like those present on a fish. We have a lot of squamous cells including skin, the lining of hollow organs, and passages of digestive and respiratory tracts. The right main stem bronchus contained my squamous cell tumor. The location is what tipped-off the emergency room physician; he didn’t realize how lucky I was given the nature of my treatment and extent of survival.
Speaking of treatment, the cited article reports: “therapeutic progress in squamous cell lung cancer has been relatively slow, with relative stagnation of survival numbers….Treatment for SqCC [squamous cell cancer] of the lung remains an unmet need, and novel strategies are needed including specific targeted therapies….” That’s not good.
First-line therapy for many continues to be the dual recipe of some variation of taxol and carboplatin, the same drugs I was administered from 2004 through 2007. And, survival rates have not significantly changed despite chemistry changes in platinum and taxol based agents. Thankfully, these have lowered the incidence of peripheral neuropathy and this is helpful.
Second and subsequent line therapies for squamous cell have benefited somewhat from research. Immunotherapy research has yielded some success in developing drugs that enhance our immune system’s ability to recognize and attack cancer cells. The alphanumeric monikers PD-1 and PD-L1 are starting to resonate with squamous cell survivors. I do like the names of these approaches ⎯ PD meaning programmed death! The idea of programming cancer cells to die is satisfying although that is not the means of attack. Nevertheless, the scientist that named this approach deserves recognition because a scheduled execution of squamous cancer cells would be well deserved payback. All squamous lung cancer cells are programmed to die tomorrow at high noon!
But, progress in the genetic arena for squamous cell cancer has been slow because it is genetically more complex compared to adenocarcinoma and mutates faster. So it is a harder target to hit. When I think of hard cancer targets, I am reminded of Siddhartha Mukherjee’s superb book The Emperor of all Maladies. He aptly describes the challenge of chemotherapy as “finding some agent that will dissolve away the left ear and leave the right ear unharmed.”
He also called cancer a “clonally evolving disease.” Cancer cells grow by cloning at a rate far faster than normal cells. Every new cohort creates mutants and some of these survive the assault of chemotherapy. All that need survive is one; it will rapidly grow now immune to the drugs targeted to kill it. Mukherjee said: “the genetic instability, like a perfect madness, only provides more impetus to generate mutant clones. Cancer thus exploits the fundamental logic of evolution unlike any other illness.” Cancer is pure evolutionary nastiness!
“Better things for better living through chemistry” was the tagline of the DuPont Corporation. Growing up in southeastern Pennsylvania, many neighbors were chemists commuting to the company research center, just across the Delaware state line. DuPont changed our world evolving from an 1802 gunpowder maker to inventing Nylon, Mylar, Teflon, and Nomex to name a few. Squamous cell lung cancer survivors need better chemistry. The call goes out for a biochemist to step-up and shut down the perfect madness of the clonally evolving squamous cancer cell.
Stay the course.
Early on, we learn Algebraic equations with only one solution. Then we encounter equations with two solutions -- Quadratic Equations. Consider: x2 + 3x – 4 = 0. This has two solutions: x = -4 or x = 1. Both are correct; one is negative and one is positive. Algebra students get very comfortable with solutions having a positive and negative outcome -- lung cancer survivors are less comfortable!
The positive outcome for lung cancer is extended life. But like quadratic equations, there can be negative outcomes that are less desirable. Mine is chronic pain. So to the question, how does one fit a negative outcome into the positive? No, Algebra does not help. But, for those in treatment or surviving after treatment, preparing for life with negative outcomes is helpful.
My chronic pain has two primary and many secondary causes. I have peripheral neuropathy -- numbness in fingers and toes including a burning sensation in toes and pain in the foot joints. It is a common Taxol side effect, and we informally call it “taxol toes.” Also, I have nerve damage caused by quite a few surgeries to my right chest that is chronically painful. How do I fit these negative outcomes into life?
My strategy is to tolerate chronic pain until bedtime. Then something must be done or I won’t sleep. I’ve cycled through over-the-counter, then prescribed sleep medications. Both worked for a while. Doc found a study suggesting a therapeutic effect for Xanax on chronic pain. He prescribed a 0.5mg dose at bedtime, allowing an increase to a total of 1.5mg. This relaxes me and makes me drowsy. It works about 6-in-10 nights.
A secondary cause sometimes drives pain above chronic levels. These are: chemotherapy induced joint pain; muscle cramps; stress, anger and excitement; sneezing and coughing; and flying on aircraft. The joint pain, an in-treatment side effect, required narcotic medication in every case to relieve. Reliance on narcotics has two downsides: an inability to think and function normally the next day and constipation. However, other secondary causes occasionally require narcotic medication to achieve relief. Because of the downside to narcotics, we’ve developed a couple of unique pain abatement procedures that may be of interest.
Our first strategy is to apply prescribed lidocaine transdermal patches to incision scars and or feet in combination with Xanax. Since lidocaine dosage is limited to 2 patches, my wife cuts them into strips and fits them along my incision scars, and applies them to my feet. A pair of tight fitting socks are stretched over my feet to keep them in place. When the offending pain spike is either in my chest or feet, a full 2-patch application is used. The patches are applied in time to allow the Xanax to work and I sleep, hopefully.
The next works only for feet and is a back-up strategy if lidocaine fails. My wife uses an ace bandage to wrap reusable frozen Blue Ice packs to the bottom of each foot. The cold is very uncomfortable for a couple of minutes, but in a short time my feet are numb and if I’m lucky, I sleep.
Muscle cramping is a long term side effect from chemotherapy. It stems from low Magnesium blood levels. I take at least 500 mg of Magnesium supplement per day. My oncologist would rather I take 1000 mg, but I suffer digestive system revolt. I learned that almonds provide 75 mg of Magnesium per ounce so I snack in lieu of a second pill. Regardless, I still experience one to two cramping events per day. When they occur anywhere near my feet or chest, chronic pain soars. There is however, no remedy for cramps. The worst occur in the middle of the night and wake me up.
Archimedes, the ancient Greek hydrologist, provided an explanation for why immersing up to my neck in a swimming pool eases incision pain. The upward buoyant force of the water offsets the gravitational pull on chest incisions thus minimizing pain. Almost every day our community pool is open, I spend hours in the water. This does not eliminate pain but reduces it noticeably. On leaving the pool, the normal level returns but it is very therapeutic. Lying in a bathroom tub, unfortunately, does not work because there is not enough water for complete submersion. A hot tub works fine, but there is no difference in pain relief from water temperature.
Flying in a commercial airliner also spurs chronic incision pain. Most airlines pressurize their cabin between 6,000 and 8,000 feet pressure altitude. This lower-than-sea-level pressure expands my chest cavity increasing incision pain. All commercial flights hurt but long flights are very painful often requiring a dose of narcotic medication in flight. Not flying is the only remedy. Those having thoracic surgery have long complained of incision pain after commercial air flights and cabin pressure is the cause.
Another secondary cause is extensive coughing and sneezing. Sneezing is particularly bad when it is a “surprise sneeze”. During the worst pollen events, I stay indoors and I try and avoid school age children to keep the chest colds in check, especially when school is in session. The last secondary cause I have the most control over: stress, anger and excitement. Admittedly, excitement is the easiest to control except when the Dallas Cowboys are playing my beloved Philadelphia Eagles. These two games a year are indeed stressful and since I live among cowboys, someone is going to be angry over the outcome.
My wife reminds me when I complain too much that I am lucky to be alive. What’s a little pain given the alternative. She’s right. Doc reminds me to avoid scheduling things in the morning so I can sleep-in late if pain interferes. He’s right. Football season is right around the corner and it is a good thing games are scheduled in the afternoon and evening.
Now if the Eagles start winning, everything will be fine!
Stay the course.
Red, in white shirt and loose thin-black tie and sweating in Maine’s summer heat, is leaning on a rock-wall fence. He’s just opened Andy’s letter found under the black obsidian rock. In the background we hear Andy reading his evocative description of hope: “Remember Red, hope is a good thing, maybe the best of things and no good thing ever dies.” The movie Shawshank Redemption is a powerful story about hope and life with a message that should resonate with every lung cancer survivor.
I watched the movie the other day and made the connection. Andy was imprisoned for two life sentences with no possibility of parole. He was wrongly convicted of murder and throughout the story of his day-to-day life in prison, everyone tells him “hope is a dangerous thing.” On escaping, Andy proclaims that hope is “maybe the best of things.” The movie story line is exactly parallel to the plight of the late-stage diagnosed lung cancer patient ⎯- an unforgiving disease with hope as the most effective means of avoiding consequences.
For lung cancer, hope is not a medical remedy. While new lung cancer treatments are emerging more frequently now, basic research funding to diagnose and treat lung cancer lags other cancers. Perhaps the pace may pick up, one hopes. Perhaps a treatment may emerge just in time to save a life, one hopes. Perhaps a miracle remission occurs, one hopes. Hope may not be a medical remedy but, for many of us, it is our only effective medicament. And, in my case, hope is “maybe the best of things.”
Recall the story line of Shawshank. Andy’s future is confinement in a mind numbing institution, but he makes a choice to live in a different reality and works diligently, every day, on a novel escape plan. He makes a conscious decision to live. He embraces the hope of escape against all odds. Andy’s poignant characterization about life reveals his reasoning: “I guess it comes down to a simple choice, really. Get busy living or get busy dying.” Exactly!
Sometimes in the heat of lung cancer treatment, we forget its purpose ⎯- extended life. No one knows how long but life for most is extended. So what do we do with the extension? Re-read Andy’s characterization.
We long for a period of life extending into satisfying old age. But most without lung cancer do not dwell on the amount remaining on account. Lung cancer patients take careful measure of the balance. But, measure for what end? I believe, if one chooses treatment, then one chooses life. Rather than dwell on the remaining balance, focus on doing something you enjoy everyday. I suggest a survivor forget the past, declare the future irrelevant, and live in the day.
“Get busy living or get busy dying.”
Stay the course.
The nature of the World Wide Web is the essence of its creators. We’ve made a conduit of ideas and information that chronicles every facet of human behavior and lots of non-human behavior. One can find a searchable version of the bible and then click to something that would be an embarrassing find in the bible. The Internet is encyclopedia, newspaper, entertainment, and abstraction all available with only one precondition, access.
I was diagnosed with late-stage lung cancer in 2004. The Internet existed but people-to-people interactions were limited to mostly email. Nevertheless, the Internet allowed access to all kinds of information about lung cancer—some of it scholarly and some of it junk. As I recall, there was nothing resembling today’s cancer message boards where people could communicate, consult, and commiserate with one another. Today, there are many and I’ll reveal how one helped me recover from depression and find hope.
In March 2006, I was in active third line treatment, infused Taxol and Carboplatin hardened by the oral chemotherapy drug Tarceva. After three failed surgeries and twelve failed chemotherapy cycles. My lung cancer was persistent and I was depressed. Watching TV on a Sunday afternoon in the throes of side effects, I saw a CNN broadcast interview with Phillip Berman, M.D. Phil was a radiologist, never smoker, and lung cancer patient who ironically was diagnosed about the same time as me. He started a cancer blog to keep friends and family informed about his treatment. It morphed into RedToeNail.org. I joined, thus starting my therapy online.
Why does it work for me? First is recognition that I’m not alone. Cancer treatment is a slog through appointments and side effects. It is beneficial to be reminded that others are trudging that same ground. Next, these people understand my disease, its treatments and mistreatments. Moreover, they have useful tips and tricks that work! I recall to this day the suggestion I eat a steamed bowl of plain rice each morning before taking Tarceva. It laughed at Imodium, but respected the rice. Last, it is a channel for me to express my thoughts, ideas and uncertainties with people who completely understand. To say they’ve been there and done that is a vast understatement. They designed the tee shirt the experts purchased!
Today’s Internet has many opportunities to connect survivors and caregivers. There is the ubiquitous thumbs-up symbol, short sentence reply, and emoji of popular social media platforms. This is fast-paced therapy connecting hundreds, perhaps thousands quickly. It is useful, but I prefer message boards. I like to take the time to read, reflect, and recall my experience when someone reaches out for help. Both, however, are effective. It is interesting to explore why.
I’ve attended hundreds of cancer support groups. They are beneficial, but I well recall my first several sessions. Certainly I was made welcome, but the fear I had of my disease was bested only by the fear I felt talking about it. I’m a relaxed public speaker but not a public cancer speaker. As I grew comfortable with a group, I realized another downside. Regulars stopped showing up. The very nature of lung cancer makes support groups a population in decline. Moreover, treatment side effects always seemed to coincide with the support group meeting. People in treatment didn’t feel well enough to attend.
I’ve also been an individual support resource both in person and telephonically. First meetings are a bit awkward but these can be very effective for both survivors. There is a shared experience and in every case, this led to a meaningful relationship. There is that same downside of the support group; lung cancer claims a life and now it is a life I was personally and emotionally connected to. It takes a very special constitution to provide survivor-to-survivor support and mine doesn’t measure up.
So I work the message boards, mostly at the LUNGevity Forum but some others. I am relatively new to the LUNGevity Forum and it is fascinating to read the history of the survivors, year after year. Some move on to other activities but return after a long absence to a rousing welcome.
Why? For exactly the same reason online support resources are so effective. We celebrate life. Stop by and say hello.
Stay the course.
Just reported is a Memorial Sloan Kettering Cancer Center and Cornell University study showing but 5% of terminally ill cancer patients understand the gravity of their disease and prognosis. Moreover, only 23 percent of these had a discussion about life expectancy with their doctor.
At first pass, I questioned the validity of the percentages. They were so low they bordered on unbelievable. This had to be mainstream press sensationalism at work! Then I spoke with an expert, and she convinced me I was not a typical lung cancer patient. The fact that I read about my disease after diagnosis was a big tell. Many do not.
My education about lung cancer started the first night of my diagnostic hospital stay. The lesson delivered ⎯ a very pragmatic and frank discussion with my general practitioner. His words characterizing my prognosis were "slim odds." He didn't want me to give up but wanted to ensure I knew the enemy.
After discharge from my diagnosis hospital admission, I burned up the Google Search Engine reading everything I could about lung cancer. In 2004 there were not a lot of sources, but there were enough to scare the living daylights out of me. Research revealed a very low probability of living 5 years even with effective treatment. My bravery evaporated.
My wife recalls that time. She reminded that my inquisitive nature departed with bravery. Martha asked questions. These explored diagnosis, treatment possibilities, and prognosis. I mostly stared at the clock in the consultation room. Or tried to change the subject.
My oncologist was frank. He said even with successful surgery, I had high odds of reoccurrence. When tumors appeared after pneumonectomy, he was down to chemotherapy to combat my lung cancer. Chemotherapy would buy time but it wouldn’t eradicate. Time purchased allowed for CyberKnife technology to emerge that was a surer kill. But treatment opportunities were explored because Martha was persistent. After a year of surgical mayhem and two years of Taxol Carboplatin hardened with Tarceva, I was barely along for the ride.
Sure, I knew my prognosis and life expectancy probability but knowledge did not empower me; it empowered Martha. So maybe the study numbers are low because patients understand their dire straits. Maybe we know and are afraid to talk about it.
In case you are wondering, lung cancer is deadly. Mostly because it displays few symptoms and is often diagnosed at late stage. The treatment tool kit for late stage lung cancer is largely empty. Why? Now that is a good question; one deserving of academic study. I’ll start.
Let’s hypothesize that lung cancer is a self-induced disease ⎯ people give it to themselves. If this is true, why should society invest in new diagnostic or curative means? As a logical extension of the hypothesis, society should never invest in curing maladies that are self-induced. How is taxpayer funded research for HIV/AIDS by the National Institute of Health to the tune of $3 billion a year explained? It is self-induced. Some will assert that a proportion of HIV/AIDS patients get the affliction accidentally. Yes, and some proportion of lung cancer patients are never smokers. But, drug abuse is completely self-induced and it garners just over $1 billion in yearly research. In the same data year, lung cancer was allocated but $225 million. No research for self-induced hypothesis fails.
Let’s construct another hypothesis: society funds diagnostic and curative research for diseases that kill the most people. Seems reasonable. Scarce resources ought to flow to afflictions that take the most lives. Let’s examine the data. In 2012, HIV/AIDS claimed 12,963 deaths according to the Center for Disease Control (CDC). In that same year, lung cancer killed 157,425!
Drug abuse is now anointed our national pandemic. Indeed prescription opioid overdose is “raging through the country.” CDC drug overdose deaths amounted to 38,538 in 2014 but in that year lung cancer deaths were 158,080. Lung cancer is our pandemic. It has been for a long time. The more-deaths-the-more-funding hypothesis is toast!
Frankly, I’m getting tired of the medical research community squandering precious dollars studying what cancer patients think, feel, or understand. What is far more relevant is how to find, fix, and finish lung cancer.
Stay the course.
MY STEPS TO SURVIVING A LUNG CANCER DIAGNOSIS
Step 1 – Invest in sophisticated diagnosics before diagnosis
If you smoke, were a long-term smoker, or are in an occupation that exposes you to carcinogenic toxins (asbestos removal, auto mechanic, painter, etc.), I suggest getting a computed tomography (CT) scan, often called a CAT scan, of the chest once a year. Insurance now covers it and CT will detect tumors far earlier than a chest x-ray. Early detection of small tumors dramatically enhances your survival chances. I had a chest x-ray in January 2004 and was diagnosed with inoperable stage 3b, non-small cell lung cancer the following month. The tumor hadn’t shown on the x-ray; but at diagnosis, it was almost 3 inches long and ½ inch in diameter. The only symptom I had was coughing up blood the day before diagnosis. Learn more about early CT screening.
Step 2 – Choose a good general practitioner
Your general practitioner may be the manager of your lung cancer treatment. The GP likely will pick your cancer team and may need to do a little arm-twisting to get things moving. Therefore, there can be great benefits to having a GP who is seasoned and well known in the medical community. I prefer doctors of osteopathic medicine to medical doctors. I’ve found that in my experience the former treat people, not patients. I believe a good physician shows kindness, consideration, and compassion toward those in his or her care. These characteristics are essential. Be sure you know your GP and your GP knows you. Such knowledge and trust will give you a survival edge. There are great health care professionals out there.
Step 3 – Ensure your oncologist is a physician
A doctor has a degree in medicine and a license to practice. A physician is devoted to restoring, maintaining, and promoting your good health. My physician oncologist does a complete examination (looks in eyes, nose, and throat, checks pulse in the extremities, checks reflexes, listens to breathing and heart rate) every visit. He reviews and explains all test results and asks how I feel. He looks at me as I speak, and he listens and makes notes on what I say. He carefully explains medical treatment alternatives that may arrest the disease, and together we choose each next step. He never rushes consultations and, consequently, often is late to scheduled appointments. Because his tardiness results from spending time with those he treats, I know he cares about me and every other patient. These are some characteristics your physician oncologist should possess.
Step 4 – Learn about your disease
At diagnosis, I had no idea what lung cancer was. Moreover, I didn’t know what an oncologist did, nor could I spell the word! After diagnosis, I read everything I could find about the disease; a good resource is the www.LUNGevity.org website. Then I read medical journals, government reports, research papers, and studies. I made notes about things I didn’t understand and asked questions at my oncology consultations. My wife attended every consultation, procedure, and test to ensure every question was asked and answered, and that we understood the answers. You need to know about type, stage, statistics, radiation, diagnostics, chemotherapy, side effects, surgical options, and so much more. Your chances of survival are improved if you are informed enough to ask highly perceptive questions.
Step 5 – Acquire a sanguine attitude quickly
Cancer is a disease of death; lung cancer kills more than all other cancers. Your attitude toward treatment is, I believe, essential to survival. When you acquire a sanguine attitude, your treatment team will notice your optimism. They will enjoy interacting with you; they will care about you. I strongly suggest you read Stephen Jay Gould’s essay “The Median Isn’t the Message” to help you understand survival statistics and find optimism about what appear to be bleak probability of survival projections. Join a cancer blog or messageboard. I am a member of several where I can broadcast my complaints and protestations to people who understand and have useful advice for coping. Find cancer support groups and join one. Most people who treat you have no idea how you are feeling. But survivors in cancer support groups understand; they know how you feel—you’ll fit right in!
Step 6 – Any port in a storm
There is no such thing as “a little stick!” During procedures and treatment, almost everyone will attempt to gain access to your veins with an intravenous device of some type. All such intrusions are uncomfortable, and unless the practitioner is good and lucky he or she will miss more often than not. If your treatment involves intravenously administered chemotherapy, you likely will get stuck at least once a week. A good way to avoid discomfort and frustration is to ask for a port. Installation involves simple, low-risk surgery. Once in place, you need to keep the area clean and exercise precautions when bathing—but access to your veins is no longer a storm but a port in a storm!
Step 7 – Don’t believe the miracle cure
The consequences of a lung cancer diagnosis are frightening. For most, it will be your first serious encounter with the prospect of death. When you type “lung cancer” into Google, you will be bombarded by advertisement that promises miracle cure at considerable expense. There is no such thing as a miracle cure! Before you invest time (now precious) investigating one of these “too good to be true” remedies, check it out onwww.quackwatch.org and discuss it with your physician. Oncology is a medical science. Procedures, drugs, and protocols are tested using scientific methods that are published and reviewed by peers and regulating organizations. When science-based breakthroughs are discovered, they are broadcast very quickly throughout the practitioner community.Read about Steve Jobs—one of the smartest technologists and businessmen the world has ever known—who delayed his cancer treatment.
Step 8 – Don’t try to tough it out
I am a retired soldier and believed I was man enough to handle almost anything. Cancer proved to be the “anything” I could not handle! I suffered a long time trying to tough it out before I admitted I was depressed. My physician’s response: “Of course you are depressed—how could you not be?” He prescribed appropriate medication, arranged consultations with a physiologist, and suggested I attend support groups. Unless you are tougher than I, you will experience depression. Admit it and accept help. Here are some other things you might try. Ask for the “freeze spray” before an IV is used. If claustrophobic, get a script for Xanax and take it shortly before scans. Even in summer, wear warm clothing to diagnostic and infusion sessions. Some areas where these take place are kept very cold. Many treatment centers have volunteers—engage one in conversation. Many are survivors or caregivers and have a wealth of helpful information. During consultations, I was so frightened I couldn’t rationally ask questions about results or next steps, and I certainly couldn’t remember what was said. Consequently, I never go alone to a consultation. I suggest if you can, always have someone with you too.
Step 9 – Become a calendar maniac
If you have a smartphone with a calendar application, become an expert in its use. If not, keep a paper “cancer calendar” to record information. Your life after diagnosis will likely become filled with scheduled appointments, and given the nature of the disease and intensity of the battle, these are appointments you don’t want to miss. For example, my chemotherapy cycle required an infusion every third Friday. I had to record three rounds of steroid medication taken every six hours before each infusion. I had a scheduled blood test every Monday following infusion. Nausea started Sunday morning and lasted until Tuesday. Joint pain started Wednesday and lasted until Saturday. If I took the nausea medication about an hour before onset, symptoms often were minimal. Furthermore, if I started pain medication a couple of hours before onset, my pain was manageable. I used the alarm feature on my phone to warn me in advance. Plus, there was life to live, and the calendar helped me avoid conflicts between my cancer treatment schedule and my life events schedule.
Step 10 – Choose to live
When asked about my cancer experience, I often tell those in treatment that cancer is a disease of life or death. I believe if you choose treatment, you are choosing life. And if you choose to live, do something with the life you are given. The “something” will be different for each of us, but doing whatever you enjoy or find fulfilling is so important. If you enjoyed an activity before diagnosis, do it afterward. Look at yourself in the mirror every morning. If you don’t see an expiration date stamped on your forehead, then enjoy the day and look forward to the next! Oh, by the way, your hair will grow back! Baldness is a beautiful badge of courage.
Stay the course.
Now, long after the commotion of active treatment, my wife and I often share recollections. Martha is my caregiver and for more than 3 years of near constant therapy she held the long thin line. In doing so, she had to confront my anxiety, discomfort and fear. These were variable; the constant foe was my general irascibility towards medical treatment. Now a 12-year survivor, we both laugh at some of my antics. But during treatment, there was high drama to deal with.
It is not easy to watch someone you love encumbered by all manner of tubes and wires in intensive care. Nor is it pleasant to attend to the full-throttle roar of chemo-induced side effects. Moreover, there is recognition that the side effect bedlam will occur with the same progression and intensity a short time in the future. Add to that the burden of failed treatments and the inability to influence outcomes. These are the plight of the caregiver.
While in the throes of treatment, most appreciated were the little things Martha did for me. Discharged from hospital with a chest tube in my lower back, scratching my back was a godsend. I was beset with “taxol toes” and rubbing my feet with Aspercreme provided immense temporary relief. But most appreciated was her homemade chocolate mint chip ice cream. This was an effective counter to a waning appetite, enormous attitude boost, and a relished wonderful concoction.
There is a fundamental reality about treatment recollection: the patient and caregiver have vastly different memories of the same event. I find it useful to accept Martha’s version as a higher order truth for two reasons. She was an observer and not under duress, and I was normally at wits end totally undone by the experience.
This difference in perspective points to the essential role of the lung cancer caregiver—a steady hand in a sea of turmoil.
Stay the course.