What follows is part news report and part personal tale. If you stick through to the end, you’ll see how the two relate. Or, at least, that’s what I’m hoping.
Regular readers know that I have recently been diagnosed with a serious form of cancer. It provided me with a firsthand introduction to the hospital industry, which led to a number of personal insights and observations that I’d like to share.
There are two things this article is not: 1, a commentary on health care access in America, which lags pathetically behind all other industrialized nations, or 2, a critique of the medical industry itself.
Virus and vaccines
A new Gallup poll finds that only about half of Americans are ready to take the newly developed COVID-19 vaccinations when they become available. If true, this number would not achieve herd immunity, protecting the nation from continued infection.
A large part of the reluctance stems from fear that the development process was rushed. Distrust of “big pharma,” and misinformation disseminated by ill-informed anti-vaxxer groups and conspiracy theorists have combined to sew public doubt about safety just when the medical world needs our confidence.
Here’s why you should feel safe taking the vaccine
You may have read that vaccines typically take at least two years or more to develop, so you might question one that took only eight months—under the moniker Operation Warp Speed. But there are reasons why several safe and highly effective vaccines were developed so quickly, none of which involve cutting corners.
Here’s a quick summary:
•Scientists have been developing a response to the next pandemic since the Ebola outbreak of 2014 using a revolutionary approach known as "plug and play," in which a cold virus was engineered to become the building block of a vaccine against almost anything. The virus is genetically modified so it cannot cause an infection in people, but it can be modified to contain the genetic blueprints for whatever you want the immune system to attack. This work was already done when COVID-19 arrived.
•It was good luck that it was a coronavirus. SARS-1, SAR- 2, and MERS were earlier coronaviruses that have been widely studied, so scientists were already familiar with their structure, and, more importantly, their Achilles heel, the "spike protein."
•Certain viruses have no natural immune response—HIV for instance. Because COVID-19 is a virus that runs a course, there is a natural response scientists can study and mimic.
•Using genetic sequences to develop a vaccine can be done much more quickly than earlier vaccine development processes.
•Developing a vaccine is costly, so pharmaceutical companies usually only fund one step at a time. When this coronavirus became a global pandemic, governments and foundation funding spigots opened immediately. Money was no object.
The Food and Drug Administration (FDA)
Many leading medical experts—especially Oncologists—see a problem with the FDA, and it’s not what you might think. Their concern is that rigorous FDA standards take too long, keeping too many promising drugs out of the market. New drugs receive extensive scrutiny before FDA approval. Only about thirty percent make it through.
Due to the urgency of the COVID-19 virus, the FDA expedited its review process for the Pfizer-BioNTech coronavirus vaccine, but it did not cut corners. FDA's scientific experts painstakingly and methodically combed the study data submitted by Pfizer-BioNTech. Everything is double-checked, nothing is taken for granted, and it’s all done transparently.
How studies work
In the peer-reviewed phase 3 trials of the COVID-19 vaccine developed by AstraZeneca and Oxford University involving 43,000 participants, half the test subjects were given the real vaccine and half were given a placebo. This means that 21,500 people got the vaccine now approved for use. Out of this group there were no serious side effects.
Reflect on that for a moment. If 21,500 people took the vaccine with no ill effects, would you expect to have a different outcome? Eventually, the vaccine will be given to hundreds of millions of people, and there will be extremely rare side effects—including potentially serious ones. This is true of almost any drug currently in your medicine cabinet.
Part 2: Cancer and me
On October 7, I was in the paint aisle at Home Depot when I got a call from my primary care physician. “How are you feeling?” she asked. “Fine,” I said; it had been a couple days since I’d had a chest CT scan for a minor pain that had since gone away. “We found a mass in your chest,” she told me. “We think it’s lymphoma.” I confirmed that this was cancer, “but very treatable,” she reassured.
A week later I met Dr. Basem Goueli, the clinical director of Hematology and Medical Oncology at Great Lakes Cancer Care, a newer division at Buffalo General Hospital. I found him to be extremely knowledgeable and caring. I mean, what doctor gives you their private cell phone number, and invites you to call or text anytime? And he always responds!
A biopsy was needed to confirm his guess as to the kind of lymphoma we were dealing with, so he set one up. Days before that appointment, I called his cell to say that I was feeling considerable chest pain with a chronic cough. He had me check into the hospital to expedite the tests.
You don’t just check into a hospital like a hotel; you have to be admitted through the emergency entrance. There, you wait for an examining room to be available. After a couple hours, I was in, and I was later admitted to a regular hospital room for a stay that turned out to last four days. One day was lost because the order to cancel a routine blood thinner came moments after it had been administered. The tumor and bone biopsies would have to wait until tomorrow. I also had a full body PET scan to confirm that the cancer was isolated in my chest. It was.
An unexpected turn of events
Four days later, Dr. Goueli informed me that—much to his surprise—I actually have thyroid cancer, also very treatable. The tumor uncharacteristically extends down into my chest in a way that misled everyone. One of the first line of attacks against thyroid cancer is radiation therapy; I would need to go to Roswell Medical Center, because Buffalo General does not have that equipment.
It took until Thursday, November 5, to meet with my surgeon of choice, Dr. Kimberly Wooten. She went over the most recent images of my tumor, and explained that because of its location, she would have a thoracic surgeon with her when she operates. She set up a preliminary test for the coming week and said she would do the surgery in December.
A fateful question
I asked Dr. Wooten about my symptoms: the cough, the chest pains that radiated into my arms. “Thyroid cancer doesn’t cause those symptoms,” she answered. “Well I have them,” I exclaimed! She set up an appointment for the pain management department, one of many Roswell care subdivisions.
After a night of particularly energetic coughing, I woke up with severe chest pains. I reasoned that it was the cancer, but what if it was a heart attack? Wouldn’t I feel foolish? Back to the Buffalo General Emergency Room, where I was taken in promptly (chest pains are privileged). Blood tests found no heart attack or other critical heart problems. But while I was there, my heart went into atrial fibrillation (Afib). This is not particularly problematic in itself; many people go in and out of Afib their whole lives without even knowing it. The real problem is that it caused my heart to race, which means it wouldn’t pump adequately. It was then that I formed the theory that the cancer was stressing the heart, causing the Afib. The doctor wasn’t sure.
Every hospital visit meant multiple blood draws, EKGs, blood pressure tests, oxygen absorption measurements, and stethoscope listens. And, today, another CT scan. The attending emergency room doctor expressed alarm; the tumor had grown dramatically since the last scan. He tried to call Roswell, but apparently, they don’t admit on the weekend, and he was unable to get hold of anyone to relate his concern.
Buffalo General kept me for six days while trying to stabilize my vitals so I would be fit for surgery. Another CT scan revealed that fluid was building up around my heart, so I was scheduled to have it drained. Apparently, I have a long sternum, so the needle wouldn’t reach. It could be done at Roswell, they told me, where Buffalo General was still attempting to communicate the seriousness of my condition. A liaison that works between the hospitals was enlisted, and I was assured that Roswell was well aware of my condition. Trouble is, they had no open beds.
Buffalo General released me on November 12, with an office appointment the next day at Roswell, but not with Dr. Wooten.
The appointment was with a medical oncologist, whose name I’ll withhold in case he was just having a bad day. The tumor had grown too large for surgery, he told me offhandedly. My cancer was stage four, meaning it had traveled throughout my body, including into my lungs. “But the PET scan showed that it hadn’t!” I protested. “The PET scan can’t see everything,” he said, leading me to wonder how he could be so sure.
I was told that my care now would largely be palliative. I would start with radiation therapy, which might shrink the tumor some, but the damn thing grows so fast that a very advanced chemotherapy would be needed too. It has many potential side effects—including that it can cause cancer, and, oh yeah, death.
What made this encounter so truly strange is that when the doctor learned that I taught art, he wanted to talk about seventeenth century Chinese painting and the theory that it might have been influenced by European artists. Then he showed me a painting on his phone that he had copied from one in the Metropolitan Museum. My wife, the nurse, and I all looked at each other with puzzled expressions. The guy just told me I was going to die. But, hey, what about those Chinese paintings?
While I was waiting for a bed to open at Roswell, I began having trouble breathing, along with pain in my chest that radiated outward, often down to the elbow on either or both sides. The breathing issue had developed over a few days, until I decided I had to go again to Buffalo General’s Emergency Room. My wife, or one of my sons, had always been with me on previous emergency room visits, but this happened to be the first day of the New York State orange zone lockdown. So, I sat on one of the socially distanced emergency room chairs alone for nine hours, before a room opened. Once that happened, my son was allowed to join me. It was about 9 a.m.
In the hospital, they want you to rate your pain on a scale from one to ten. I told them I needed a different scale. It wasn’t how severe the pain was that mattered; it was how widely it spread. Then too, there was an overwhelming feeling of malaise that didn’t neatly fit into the pain category.
This was the worst I have felt throughout my illness. It was painful and frightening, as I tried to find a position that allowed full deep breaths. I was admitted to the hospital again, and a cocktail of steroids and opioids facilitated breathing and eliminated pain.
On November 22, I was admitted from Buffalo General to the Roswell Intensive Care Unit (ICU). Fun fact: Buffalo General and Roswell are across the street from each other, and they have an over-street connecting corridor. But to be transferred, the hospital has to call an ambulance to drive you.
The next day I met Dr. Edwin Yau, a Medical Oncologist, for a third opinion. A friend had recommended him. Yau has a soft-spoken matter-of-fact way of delivering news, without sugar coating. He explained that I have anaplastic thyroid cancer, the most advanced and aggressive type. And it’s very rare.
He agreed that all my symptoms, including the heart problems, result from direct or indirect stresses caused by the tumor. They drained the fluid from around my heart (presumably with a longer needle) and checked later to see that it was not building back up. By now, I had also lost my voice, a result of the tumor pressing against vocal nerves. There’s only so much room in the human chest, and this growth was buying up real estate at a rapid rate.
Dance with the devil
With cancer, you want to be leading the dance. But I have a jitterbug tumor with waltz treatments. I started radiation the next day. Using CT imagery, a doctor mapped on my chest where my tumor is. Overnight, he created a computer plan to focus the radiation where it needs to be. As I lie on my back, they position my body using a projected center line, and then the machine rotates around me. It doesn’t take long.
It should be noted that for this and every procedure I’ve been going through, I sign an approval form. Typically, they hand over several printed sheets, and instruct you to sign at the bottom. I’m pretty sure no patient in the history of medicine has ever read them. If potential side effects are discussed, it’s often cursory. You simply trust that this person, who has dedicated his life to fighting cancer, knows what’s best, with the least risk. In any case, I had few options.
Five treatments—one every other day—must be the radiation limit a body can take. A week or so after the last treatment, I mentioned to Dr. Yau that I felt some surface pain around my breastbone. “That might be radiation burns,” he responded casually.
On the last day of radiation, I started chemotherapy. I was given a basic rundown of possible side effects, of which there are many. There was an attempt to put into place a peripherally inserted central catheter (PICC line), a tube running from the arm to the heart. But there was some sort of blockage. A tumor? A blood clot? Who knows? They ended up using a regular IV to administer the chemo.
Dr. Yau did not offer a lot of hope for the radiation/chemo approach, only that it may slow the tumor. However, both he and Dr. Goueli were sending my biopsy material for DNA analysis, which takes a couple weeks, in the hope that some cutting-edge gene therapy might be possible.
The big question
In all the time I spent in the hospital, I never heard the word “terminal.” But it was just a matter of time before the tumor’s impact on surrounding organs would become too severe for my body to handle. Lingering in the back of my mind was always the question, how long? I avoided asking though, until, one day, when I was speaking with a woman from the palliative care unit.
“Weeks,” she said, “maybe a few months.”
A stroke of luck
Dr. Yau walked in the room, and with the same vocal tone you might use to order Chicken McNuggets, he announced that there was some good news. The cancer turns out to have a specific genetic marker that makes it susceptible to a genetically engineered attack drug, one that causes it to shrink, but doesn’t impact the rest of the body. It’s been very effective, though there is so little research—especially on my rare cancer type—that they don’t really know how much the tumor might shrink, how long it might last, or if it will work at all. But Yau seemed pleased, so I was.
The chemo treatments stopped, and I was put on this new pill regimen the next day. As with everything, there are numerous potential side effects. And it’s insanely expensive (and that’s all I’ll say about the importance of health insurance). For the science buffs out there, an interesting tidbit: there are actually two medicines (magic pills we like to call them). If they only used one, the cancer might mutate and develop a defense. But alternating with two, it can’t work that fast. Gotta love science.
For eighteen days I bounced between Roswell’s ICU, the Intermediate Care Unit (IMCU), and a regular room. I was often tethered to a variety of tubes and wires, with blood pressure cuffs that activated on the hour, and 24/7 heart monitoring. I got so many blood draws that at one point, four nurses were simultaneously hunting for a usable vein. Due to the Afib, which was usually accompanied by a racing pulse, EKGs at all hours of the day and night were common.
ICU rooms have glass walls facing the hall. The only toilet is a commode in plain view. There’s a curtain that mostly covers the windows, but someone has to shut it. Often, I had to call a nurse to unhook me before using the facilities. Any residual sense of personal modesty dissipates under such conditions.
I watched hours and hours of TV, mostly news. I left it on twenty-four hours a day, as the drone of post-election updates lulled me to sleep at night. Bedding, gowns, and just about everything carried a chemical smell.
Hospital meals aren’t as bad as their reputation. At Roswell, you order room service from a menu. The food arrives in a half hour or less. I recommend the omelets, which you customize with your choice of cheeses, meats, and vegetables. Or you can concoct your own breakfast sandwich. There are a variety of deli choices and salads for lunch. Entrees include a nice pot roast and baked chicken breast. Vegetables are the weak link—overcooked and unadorned.
Studies show that bed confinement results in a decline in skeletal muscle strength at a rate of around twelve percent per week or more. I was more or less continuously in bed for five weeks. It wasn’t unusual for me to ask a nurse to hand me something sitting eighteen inches away.
Each department at Roswell performs a specialized function. I would be seen daily by dozens of staff: doctors, nurses, nurse assistants, medica students, and support staff. They came from internal medicine, oncology, palliative care, nutrition, cardiology, physical therapy, radiation medicine, pharmacy, pain management, and way more departments than I can recall. Each check your vitals, and asks the same questions: How do you feel? Any pain?
The staff at Roswell is a diverse group, each with their own unique personality. One ICU nurse greeted me with such cloying cheer that it made me recoil. “How are ‘we’ doing?” she inquired hyper-brightly as I was rolled into ICU, and I wanted to respond, “We’re dying.” Another started her shift with a litany of complaints about the previous staff. A third had a hypercompulsive need to clean and straighten up. But overall, I can’t say enough about the kindness, compassion, and conscientiousness of the folks at Roswell (The same is true of Buffalo General). Under constant pressure, they do a great job, never complaining when you call them to adjust your blanket.
My pain and breathing problems had been solved with a variety of drugs. But my tumor was still growing and causing my heart to go into Afib and race. There are medications that bring down heartrates. I’m on them. But they also lower blood pressure. The cardiac team searched for that sweet spot, where my pulse was regulated, but my blood pressure remained high enough that I don’t pass out.
Each of my final five days at Roswell, I was scheduled to go home the next day. Each night, my heart would race. “We have to keep you one more night,” they’d say.
I was finally sprung last Wednesday. I went home with nineteen prescribed drugs. Follow-up visits start this week. I have in-home appointments with physical therapy, two home nurse calls, and a palliative care visit. Walking feels like being on a planet with double the Earth’s gravity. When I stand up, my blood pressure drops, and I have to wait a minute until I stop feeling woozy before I walk with a cane or walker.
Three months ago, I was a very healthy sixty-eight-year old, with low cholesterol, sugar, and triglycerides, and good blood pressure. My liver and kidneys functioned like an eighteen-year-old’s. My parents both lived to ninety-five, so I figured I had genetic longevity on my side.
When I was told in Roswell that the end was near, I focused on the positive. I had time to make arrangements, make sure my family had necessary passwords, plan for my studio and existing artwork, explain how to take care of the pond, have those final conversations. I do not fear death, but I’m not crazy about the trip there. Being an atheist, I have no one to beg for mercy, but also no one to blame. This is how life is, full of random events with no cause.
Now the hope is that the magic pills will shrink the tumor, so it backs off my heart, and leaves my lungs and vocal nerves. No one is suggesting that it will shrink enough to be removed but hope springs eternal. In a week or so, I’ll have another CT scan and we’ll see what’s happening. If the pills work, I have more time.
My friend and noted neurologic oncologist, Dr. Laszlo Mechtler, has been very supportive, reminding me that the most aggressive tumors are the ones that react best to treatment. He points out that many people with similar cancers make that magic five-year-mark. So, my focus now is to get strong, using whatever time I have productively, while cancer research continues at breakneck speed.
Part 3: The lesson
If you dig deep enough, every story has a moral. Think about the procedures and medications I was given over the course of this illness. When they handed me the papers to sign, did I read them? Did I question the safety or efficacy? Did I say I have to see what Doctor Oz thinks about this? No, I trusted the experts to have my best interest in mind and I let them make the calculations. Their message: you have a better chance of living if you do this.
That’s the same message the medical world has now about COVID-19 vaccinations. You’re probably thinking, that’s different. Mine is a life or death situation. To which I say, oh yeah? Is my cancer killing three thousand Americans every day? Does any drug I take do anything for anyone but me? No. The coronavirus vaccine—if widely used—will save tens of thousands of lives. This holds true for vaccinations in general. Will you experience serious side effects? Almost certainly not, but that infinitesimally small risk is far less than the risk of not taking it.
Yeah, I know, big pharma is a huge capitalist industry, whose responsibility lies with its stockholders. Fortunately, the FDA, and millions of medical experts globally aren’t checking their stock portfolios before approving vaccinations. They’re checking the science. They’re examining the data, so we don’t have to apply our half-baked, misinformed, “common sense” ideas of what’s safe and what’s not.
When you have your chance, get vaccinated.
Long Story Short is an opinion column by artist and educator Bruce Adams, a longtime contributor to Buffalo Spree.
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