Michael had a cyst on his eyelid which was drained by our eye doctor. He also had a visit with the dermatologist who observed some odd tissue on the crown of his head and performed a biopsy which showed precancerous cells. She asked him to return in December for a second look. Hyper vigilance continues.
We welcomed Thanksgiving with stunned gratitude. After the 2013 holiday, we thought we’d spent our last favorite family holiday together. That previous November, we’d been told that Michael’s Merkel cell cancer had returned, scattered throughout his bones, and that absent treatment, his prognosis was 2-3 months. With treatment, perhaps he’d have a year. And here we were, past that year with the family gathering again in our home. Michael had weathered his chemo well but despite that, we knew that the cancer, which had been undetectable for 4 months, was now visible again in a few spots on his skeleton. Thus far, he remained asymptomatic. We’d managed to take a few special trips and were doing pretty well at living mindfully. But we were also tired and stressed. The anxiety of living from scan to scan had worn both of us down. Life outside Michael’s cancer hadn’t stopped either. My mother, aged 91, was now showing signs of dementia. Her life in assisted living was getting harder to manage as she regularly confused her medications, causing dizzying symptoms. She was also having wild diabetic episodes which required frequent trips to the ER. My sister and I were trying to manage her problems together, but as her power of attorney for health care, I needed to be present much of the time. I resented having to be away from home at all when Michael was struggling with the disappointment of his scan. In the midst of everything, I was reminded of what I’d learned as a much younger woman – during times of crisis it’s likely that people will become more like themselves rather than developing new and better responses to stress. That certainly applied to both Michael and me. When the family dispersed, he went into a dark, irritable space. Facing his mortality every day was wearing on him and withdrawal was one of his go-to life management techniques. Mine was to begin probing and pushing, getting it all out on the table, aggressively trying to dissect every feeling and every thought. Michael had frequently said drily throughout our lives, “would you mind removing your feet from my back?” Yes. I was usually impatiently stamping my feet at the finish line before Michael got out of the blocks. In the best of times we tolerated each other’s differences pretty well. These however, were not the best of times. Being angry and alienated from each other is truly a dreadful feeling when you know that time is so limited by disease. Neither one of us could allow too many days to pass before limping back to each other, trying to find our common ground so we could reunite and face whatever was coming next. There’s no manual for dealing with terminal illness. We just kept going, trying to manage ourselves and our relationship in the best possible way.
December, 2014 was an intense month. Michael went back to the dermatologist who destroyed more tissue on the top of his head with liquid nitrogen. My mother continued to deteriorate both mentally and physically. She was in and out of the hospital every few weeks. I realized that assisted living was about to become a thing of the past. In two years she’d gone from living with me to the partial care facility – now she seemed destined for a nursing home.
Meanwhile Michael had his December scan. Not only had the three spots which were radiated failed to respond but there were two new ones. He was still pain-free but we knew he needed to get some systemic treatment before the cancer became more widespread. I had sent out a dozen inquiries to researchers across the country who all felt like Michael’s best bet was the clinical trial for a PD-1 inhibitor rather than the possibility of using Tarceva and Zometa which might affect one of the mutations in his tumor tissue. A branch of that PD-1 trial was starting in January at Barnes Hospital in St. Louis, only a few hours away from home. We were desperate for him to get approved for that before there was a decline in his overall physical condition. The learning curve about clinical trials was steep. In our naïveté, we thought having a proven incurable disease targeted by the experimental therapy was enough to qualify. Instead there were rigorous standards involving previous treatments, blood count levels and in Michael’s case, what was the most challenging – evidence of measurable disease. We found out that bone metastases were not considered measurable disease; rather there needed to be soft tissue that could sized for potential shrinkage from the treatment. I still can’t understand the narrow parameters of a trial to treat a rare and incurable disease. However, our local radiation oncologist informed us that the scans he used to develop his radiation plan for those first three recurrent cancer spots showed soft tissue involvement along Michael’s rib. He gave us copies of those scans with the rib area highlighted. We managed to get an appointment to see the principal investigator for the St. Louis trial in mid-January.
In late December, we ran off to Starved Rock for a brief two day vacation, keeping up with the tradition we’d practiced for years. I left town with my mom still in the hospital. I was exhausted from trying to deal with the logistics of her life and the bureaucracy of both her health insurance and the assisted living home. I was also exploring our own health insurance for the drugs Michael would need if he didn’t get into the trial. Our trip had a forced element to it although it was better than not going. When we returned, my mom was too ill to be anywhere but a nursing home.
December 26, 2014
Dorothy to the nursing home today. Dismal, depressing and a bitter end. I always said I’d never put my mother in a nursing home but I actually did it. Who can ever really know what they will or won’t do? Life is full of unpredictable and unimaginable changes. Those who can’t adapt belong on the losing side of natural selection. But the strong ones who survive are mutated. I am mutated. Some days I am unrecognizable to myself. Is there any girl left in me? Am I completely brittle from my experiences? Where are the soft unprotected innocent spaces? Can I find some velvety smooth place to nestle in for just a few minutes?
Our family went out for New Year’s Eve dinner as we did every year. We’d started 2014 in terror and were ending it only slightly less fearful. By January 5th, Michael started feeling pain in his hip at the site of one of the lesions which had shown up on his scan. A few days later we were frantically packing up my mom’s apartment as the assisted living facility wanted it available for a new renter. We were hoping that Merkel Cell would, as our Dr. Luyun had stated, remain at least a little indolent for another week or so as Michael’s intake appointment for the immunological PD-1 trial was looming at the cancer center at Barnes in St. Louis. With no systemic cancer treatment since March of 2014, we were certain that the slow insidious return of disease could soon escalate. We tried to stay optimistic, hoping that entry into the trial was imminent and that this new immunological drug, soon to called Avelumab, would have more benign effects than Tarceva or another chemo. Michael already needed a narcotic for the new pain. We were teetering on the edge of a cancer abyss.
On a glittering cold and sunny January morning we drove off to St. Louis. We carried the scans from Dr. Stanic, where he’d clearly marked and measured the soft tissue along the rib which was mandatory for entry into the trial. The Siteman Cancer center was huge, gleaming and bustling with activity.
We were ushered into an intake office where Michael filled out the application and waiver documents required by the trial. The principal investigator’s nurse, Joann, unfortunately reminded us a bit of Nurse Ratched in One Flew Over the Cuckoo’s Nest, although she was actually more brusque. She did a cursory vitals exam and quickly got a blood draw. We mentioned that we were concerned about Michael’s low platelet issues. She said, “oh that’s no big deal – you can just get an infusion before your treatment.” We stared at her, dumbfounded. That didn’t sound much like what the protocols said. Within a few minutes we met the doctor, Gerald Linette who went rapidly over the documents and then surprised us by already having the blood test results. They showed that all Michael’s counts were adequate for the trial. Things evidently moved much faster at this large cancer facility than at our community center at home. We felt relieved and hopeful. Although this very different atmosphere was somewhat antiseptic and cold, all we really cared about was getting into the trial. We handed Linette our scan copies. He quickly informed us that Michael would be scanned on-site and that only their local results would be considered as opposed to those done on off-campus equipment. He ordered the scan and said we’d be informed of his decision as soon as the results were read by a radiologist. Michael was in and out of the test within minutes and suddenly we were on our way back home. We were mid-way through our return trip when Joann called and informed us that the Barnes scan showed only 2 sites of active cancer versus the 5 on our local scan. In addition, there was no sign of soft tissue involvement. I started arguing with her because she was being so dismissive. She cut me off and said abruptly, “Michael needs to go home and get sicker. Have him scanned every two months and call us back when things get worse.” And that was that. We were so disappointed, angry and frightened. With this avenue closed off, all we had left was the Tarceva/Zometa combination or another line of chemo. Either an untested choice or a choice we knew wouldn’t do much. The Tarceva was incredibly expensive and we needed to get insurance approval before we could begin that regimen.
The advent of pain into Michael’s life changed everything. Prior to the end of his remission, the only pain he’d ever suffered from illness was a byproduct of radiation treatment. Almost three years from his initial diagnosis, he was hugely fortunate that Merkel cell had thus far been a mysterious abstraction that he knew was inside him. Now it made its presence known round the clock. His need for pain medication became a complicating issue. The meds caused stomach problems. They didn’t really provide thorough coverage so pain woke him at night causing fatigue and mental fogginess. In addition, there was no way to pretend that he was okay, even for a short time. Although we’d been looking at the possibility of death for more than a year, the physical symptoms made things much harder psychologically. We tried to continue making the most out of every day but we had dark times, both alone and together.
We went about the business of getting Tarceva approved by insurance. Tarceva was an oral medication and the adjuvant Zometa was administered by infusion. By the first week of February, Michael began this experimental treatment, hoping that it would target the primary genetic mutation in his cancer cells and halt disease progression.
After only a few days on this protocol, side effects hit with a vengeance. Michael developed an angry pustular rash on his face, chest and the back of his neck. He developed new pain which now involved both hips. We saw the radiation oncologist who zapped the first three spots of the returned cancer and he suggested that some of the pain might be attributable to arthritis. I was baffled by this suggestion as Michael had been through the pain of herniated disks in his life and never was as uncomfortable as he was in these moments.
He became very quiet, sighing a lot and saying he was trying to find his balance. On occasion he’d go back to teaching as a guest speaker, trying to feel like there was life outside cancer. I worried a lot about his being exposed to a broad community of germs but he needed to go there to stay sane. We’d always had differences about how much validation we got from external sources. So off he went while he could while I fussed away internally.
Within two weeks, the side effects went from bad to so bad that treatment needed to be stopped. His blood showed elevated liver enzymes and his dreadful rash covered his head and entire torso. He developed jaw and esophageal spasms, bloat and acid stomach. He grew so weak he could barely get out of bed. What a rapid and stunning reversal from the relative good health he’d maintained for so long. In addition, his pain was increasingly breaking through his meds. I found myself in the unenviable role of advocate and chief nag. Michael had little appetite and not much thirst. I knew that not eating and drinking would compound all the other issues. So it was up to me to push and prod, all day and all night, counting calories and ounces and driving my beloved husband crazy. Obviously I didn’t want this miserable job. But Michael wanted to stay alive and if he couldn’t manage his basic care, I would. Basically this failed treatment sapped his energy. He was prone day and night which only made him feel worse. Dr. Luyun suggested Michael try what was considered an “old people’s” antidepressant, Remeron. Its primary side effect was increased appetite and weight gain. At that point, anything was worth a try. By mid-February, Michael was like a shadow. Exhausted, in pain and spending lots of time sleeping. We set up appointments for X-rays to see if anything new would show up in his sore hips. Meanwhile, at the crown of his scalp where he’d had the biopsy and the liquid nitrogen treatment, there was a peculiar lump growing. At first, the doctors thought it was a keloid and then perhaps a cyst. It was scaly, about 3/4 inches tall and seemed spongy. Dr. Luyun recommended removal. When Michael saw the dermatologist, she felt it would be better to have the head and neck cancer surgeon remove it because of its size. Our original surgeon had moved away so we went to the young woman he’d suggested. We saw her and she scheduled an outpatient surgery. That morning, I sat in the waiting room waiting for someone to call me back to see Michael in recovery. After awhile, I realized too much time was passing. I went to the receptionist who managed to send a patient liaison to talk with me. She informed me that the surgeon was sending one frozen section after another to a hospital pathologist. I immediately realized that the growth was a Merkel cell that had gotten by all the doctors. My heart literally sank into my gut. How could I tell Michael that what we thought was an innocuous cyst was cancer? Even worse was realizing that this growth, which had been present, albeit smaller, since December, was actually on his head when we’d gone to Barnes to try getting into the trial. He’d had the trial-precluding soft tissue component for months. And indeed, he’d gotten so much sicker that his liver enzymes would disqualify him from the trial at this point. When the young surgeon came to speak to me I could see she was totally shaken. She’d had to cut almost to his skull before she found a clean margin with no cancer cells. She was barely able to seal his incision which had a large yellow bolster pressed down against it that would need cleaning while it stayed in place until skin regenerated.
I felt devastated. I pulled myself together for Michael’s sake but this trajectory, coupled with my mother failing in the nursing home, was a gigantic weight, so much to carry.
February 27th, 2015
How did this happen? In January, his scans were stable. What’s happening now? I feel so defeated. Where do we go from here? How much time is left? When my eyes pop open in the morning, my brain is instant tumult, running possibilities, turning flips, the pace so rapid that I am breathless. I continue to cast around for alternatives. I am so lonely.