Right now I’m participating in a fundraising effort for some old friends of mine, who’ve been coping with a ratcheted-up metastatic cancer. In other words, after many years of going up and down with remissions and lapses, this man’s prostate cancer has taken off again, accompanied by a new bladder cancer as a further complication. They’ve had some decent years during those remissions. Hard ones too. They’ve raised kids, lost parents and siblings, aged, had financial problems and lived their lives with the good and the bad parts that are normal components of life. Meanwhile that “indolent” cancer, a favorite oncologist word, decided for inexplicable reasons, that hanging out was over and rampage time had arrived. When that happens, a tsunami of problems is unleashed, from the awareness that abnormal cells are devouring healthy tissue, to the confrontation with mortality, to fear and grief and a cloudy future. All the medical data that is alien and confusing jump on the pain train. Every day these tough issues become constant companions. If you live in the USA, your bonus terror is the money factor. For the lucky people who have seriously deep pockets and the subsequent clear field to acquiring the best treatments out there, a rotten situation becomes a bit less daunting. For the poor and uninsured, they are at the bottom of the medical Mt. Everest. And then there are the rest of us, somewhere in the middle of the morass of the staggering weight of what’s next physically, emotionally and psychologically, coupled with the business model of the medical and insurance twins which have to be navigated whether you are capable or not. I know about this. I lived it for five years. Now five years out from Michael’s death, I still remember how terribly difficult our life was, trying to stay balanced between what we knew was important, us and our family, while living in fear of insurance denials, outrageous pharmaceutical costs and whether we could avoid bankruptcy. I am not making fabricating this truth.
A study published in the American Journal of Public Health in 2019 found that 66.5% of bankruptcies in the U.S. were due to medical issues like being unable to pay high bills or due to time lost from work.3 Even with health insurance, high deductibles and copays, plus job loss, impact Americans. Rare or serious diseases or injuries can easily result in hundreds of thousands of dollars in medical bills—bills that can quickly wipe out savings and retirement accounts, college education funds, and home equity.
The photos above were taken two months apart. The top one was taken a few days before we got the biopsy results from the tiny lesion that had shown up on Michael’s cheek, the one under that little bandaid. Discovered to be the lethal cancer Merkel cell carcinoma, Michael required a lengthy flap surgery in which his parotid salivary gland and sixty-six lymph nodes were removed. That surgical procedure was to be followed by thirty radiation treatments to the closest lymph draining basin, in his head and neck, in the hope that any rogue cancer cells would be destroyed before spreading throughout his body. Two of his lymph nodes were malignant. Michael was 62 years old at the time, ineligible for Medicare. He had an HMO through his teaching job at the time. We were lucky – Michael had enough sick time banked to cover the last few weeks of school that he missed. We were able to come up with the maximum amount of out-of-pocket medical expenses because of that sick time and by canceling our planned summer vacation.
We were staggered by it all. Michael’s parents came from long-lived families, both of them living until their late 90’s. I always thought that I’d die first, the product of one of those family medical histories that included virtually every dreaded condition or illness. We were a lucky couple, still deeply in love after forty years and keenly aware that there would never be enough time to satisfy our desire to have more time together. The statistics about survival after Merkel cell had spread into lymph nodes were grim – fewer than 10% of patients survived as long as five years. Michael’s radiation destroyed his appetite by burning his mouth and throat, making eating a challenge. His skin was badly burned. We made it through the months of treatment and Michael, albeit thin and tired, determinedly returned to teaching in the fall. Slowly he rebuilt his strength and in November, a full body scan showed no evidence of disease. We went forward, trying to push our trepidation to the backs of our minds.
From November, 2012 through November 2013, we practiced living in the moment. Michael taught while I continued caring for our grandson. He saw his cancer surgeon every three months along with his dermatologist who both checked his skin for new lesions. The treatment protocols for his cancer stage had no further whole body scans, absent a recurrence of visible disease. I was always uncomfortable with this plan. If Merkel cell that had gone metastatic was so lethal, why no scanning when melanoma patients were scanned every three months? We pushed ahead. Michael, the class sponsor for his school’s seniors, was a chaperone who donned a tuxedo for their prom. We rescheduled our canceled trip from the year before and off we went. I sent him off to our biologist son’s field station in Panama for a trip alone together, which they’d never before shared. At our June appointment with the medical team assigned to his case, I argued vigorously for a scan. The protocol issue arose but I pointed out that protocols seemed a misnomer for an incurable disease. Finally they all agreed to a scan in November, 2013, one year from the last one. Waiting for scan results is one of the most nerve wracking experiences imaginable. Michael had his on a Friday, with a follow-up appointment with his surgeon the next Tuesday. But we received a call moving the appointment to Monday. An obvious bad sign, we met with the surgeon who showed us a lit-up view of Michael’s skeleton with cancer evident in eleven bones. He was as stunned as we were, convinced this was a new cancer. But a bone marrow biopsy confirmed Merkel cell and just like that we were moved from the cancer surgeon into the care of the oncologist, who we’d met exactly once the past June. He told us that absent treatment, Michael had two to three months to live. With a powerful chemotherapy cocktail, he potentially had one year. Michael rapidly departed from his job which was truly harsh for both him and his students. We got through what we thought was our last big family Thanksgiving at our home and in the beginning of December, he began his infusions. Still ineligible for Medicare, we began the cancer insurance process. Every treatment had to be approved by our insurance company, the ultimate arbiter of decisions. We quickly went through our out-of-pocket annual allowance, only to discover that chemotherapy was a “specialty drug” which by itself had a co-pay of $4500. Within a month, we’d used a year’s worth of the maximum amount of our required contributions, only to begin anew in January. Before you can blink, you suddenly find that you’re unexpectedly spending $15,000. In addition, the disruption of daily life, spending hours in the cancer infusion suites where delays are a matter of course, necessitates spending money on extra food because you’re too exhausted to cook. If you don’t have a big wad of savings, credit cards get used adding in more monthly expenses. All we wanted to do was focus on our lives together and Michael’s health, but money and bureaucracy quickly start demanding way too much attention. At the scariest time in your life, the business end of cancer gobbles up energy while increasing overall anxiety. This is health care in the U.S., the only modern country in the world without national health care. The psychological and emotional costs to patients and their families is immeasurable. I clearly remember thinking about the hideous school fundraisers like bake sales being required for necessities while having the defense budget overflowing with cash. The health care system is a bloated bureaucracy with patient care a line item, if that.
Michael’s cancer responded to chemo. You’re allowed a few rounds of misery, hair loss, fatigue and trauma. Then a scan is ordered. If there isn’t enough diminishing of the cancer, treatment can be halted by the physician, the insurance company or both. With enough cash, some patients can opt for a different treatment facility or if all the requirements for a clinical trial are met, more life can be available as part of a grand experiment. Qualifying for a trial isn’t easy, a fact we discovered when one of Michael’s remissions ended. Our local doctor thought he was eligible, but the principal investigator of the trial disagreed. Any semblance of control over options is dashed unless you have the financial resources to pay your own way. We wound up taking an incredible risk of taking an advance on Michael’s small life insurance policy through the school district. This required a document stating that the patient had less than a 10% chance of surviving two more years. Dealing with these business matters during such a crisis is surreal, not to mention cruel. But we decided to squeeze as much retirement time as we could into Michael’s healthy times because we weren’t going to have the future we’d hoped for so long ago. One of the worst parts of that plan was that if Michael unexpectedly lived to age seventy, the rest of that life insurance would be void except for a stipend that could help with funeral expenses. He worried constantly about leaving me broke if he lived too long. Absolutely hideous.
So we did what we could during the remissions which usually lasted a few months. We spent time with our family. Michael got to meet our second grandchild, to see our son complete his PhD and to watch our daughter get inducted into her university’s athletic Hall of Fame. We traveled to national parks, to the Baseball Hall of Fame, FDR’s Hyde Park and to the Civil Rights Museum, ticking off Michael’s bucket list items. We went to the Outer Banks and even made it to Puerta Vallarta. When the next bad scan came back, we hunkered down. Michael finally made it to Medicare which didn’t much matter as treatment options diminished. One suggested targeted therapy was $58,000 a month. The pharmacy gave us one 30 day supply under a special program. Michael’s body revolted against it with elevated liver enzymes and a terrible rash. We were relieved when he had to stop it as we had no idea how we’d have paid for it.
In 2015, declined by a trial with options shrinking, our oncologist applied for a new immunological drug being used in experiments with lung cancer and melanoma patients. We had no idea how he got it approved but Michael was failing and getting closer to death. Each infusion, every three weeks, was over $23,000. We were appalled, terrified and grateful because Michael was an exceptional responder to that medication, which bought him an extra year of life. By that time we’d procured the best supplemental Medicare insurance policy available which was covering that outrageous amount of money. We were able to do enough research regarding treatments, insurance and drugs for an almost impossible outcome, if not a cure. But the multiple levels of anxiety and stress are almost impossible to describe.
At the beginning of 2016, we got a new oncologist. Michael had a liver enzyme flare and had been taken off his expensive miracle drug. This doctor, who was observing that Michael was holding his own, wasn’t willing to re-challenge him with the effective meds to see if his enzymes would normalize. He was off treatment for that whole year, continuing to have negative scans. But he started behaving strangely at the end of that year. I knew something was terribly wrong and was begging for a brain MRI which the doctor felt wasn’t justifiable. At the end of January, 2017, I convinced Michael to go with me to the ER to get what hadn’t been prescribed. That brain MRI showed what’s most easily described as cancer meningitis, impossible to pick up on a CAT or PET scan. To me this was another example of opting out of a more expensive procedure according to the business model hospital management style. Although his immunological drug was finally prescribed along with hideous whole brain radiation, Merkel cell finally had its way. Michael died on May 28th, 2017.
Cancer can happen to anyone. In the U.S., the burdens placed on average families make coping with it infinitely more difficult than the already egregious task of losing loved ones. I was lucky to have Michael for longer than we thought. Of course we both wanted more time. And we both wished we hadn’t had the exhausting financial distractions complicating our emotions. I promised myself that I would try to be a helper as much as I could for others who are going through these tough times. Sometimes I can’t believe I came out on the other side of my most unforgettable painful experience. I remember all of it. Doing something positive for someone else feels right. The truth is, what would really be right is national health care, like that in other more civilized countries. If I figure out how to get it, I’ll let you know.
I can’t believe that it’s been almost 5 years. I miss him so much. Love you.
Me too.