The five year anniversary of Michael’s death is looming, just a few months from now. In some ways, it feels like yesterday, in others like a hundred years. I wrote copiously through his illness, taking refuge in the blank pages which absorbed my pain, took the edge off the darkest days and allowed me to continue operating like a mostly sane person. The bonus byproduct of writing things down is that you get to see how you evolve over time. My number one coping skill is what I call “The Five Year Rule,” an aid in maintaining the perspective that what feels most impossible in any particular moment, will seem quite different five years down the road. I was interested to read my thoughts on Michael’s cancer at almost the five year anniversary of his death. Surprisingly, I wouldn’t change a word of what I felt when I wrote this brief essay back then. I didn’t realize that I would be left with PTSD when I was left on my own. I worked my way through that complication. But, I still feel the same love and emotional connection to Michael that sustains me as I move forward through life. And I think that for those coping with cancer in themselves or someone they love, that what I wrote might be at least a bit helpful.
Years ago I had a friend who was describing some symptoms that her mother had been experiencing recently. I listened carefully, recognizing that they sounded very similar to those my dad had before being diagnosed with bladder cancer. When she finished talking, I gently and carefully suggested to her that what I heard was sounding a lot like cancer. She looked at me rather nonchalantly and said, “we don’t get cancer in our family.” I was really surprised. She was smart and thoughtful and in a blink just dismissed the most non-discriminating killer on the planet. Within a year her mother was dead from her bladder cancer, after putting off appointments over and over because cancer wasn’t part of their history.
Cancer is the original equal opportunity employer. Cancer isn’t sexist. Cancer isn’t racist. Cancer is nondenominational. Cancer doesn’t care what you believe about life or death. Cancer doesn’t care about your looks or your smarts or your interests. Cancer just is. Cancer can fell anyone, no matter your strength or your attitude. Cancer isn’t a fight. At least not a fair one. When people die from cancer, they’re not losers. They haven’t lost their battles. They’ve just been overcome by an elusive, stealthy biological mystery that in their cases, had no true known answer to its mutable abilities. As cognitive beings, we naturally search for answers and reasons for what we can’t understand or didn’t expect. Everyone gets to decide what’s best for them. We found our own way.
Michael knew that skin cancer ran in his family and was vigilant about using sunscreen, seeing his dermatologist every three months and attacking any suspicious spots by excision or medications. My big, strong husband who was everyone’s hero was felled anyway. Cancer liked his body and his immune system couldn’t do a thing about it. We knew from the initial diagnosis that the likelihood of him surviving his orphan cancer was small. Reading the Merkel Cell website the day of our life-changing phone call was grim. We had an instant flash of recognition – our world was forever changed. Both of us, different in so many ways and virtually identical in others, got ready fast, an especially tough trick for Michael who always moved slowly. The big joke between us was him saying, “Would you mind removing your feet from my back?” as I blazed past him. But he knew this was different and that speed was mandatory. We learned everything we could and followed best practices, with multiple medical opinions from the top experts in their field. We had a genetic analysis of his tumor tissue. He tried one treatment after another. I wrote every principal investigator of every clinical trial I found on the Clinicaltrials.gov website. About half of them answered me and they consulted with each other about our case. We realized they were doing their best to brainstorm for a viable solution to this disease. But there wasn’t one.
Michael had eighteen rounds of a potent cocktail of chemo drugs. Over 5 years, he had 75 radiation treatments. For 45 of them he wore a molded facial mask which was then bolted to a table to keep him still while he was blasted with rays. He took shots to support his bones which weaken during treatment. He tried a targeted therapy, aimed at a genetic mutation. His skin erupted in an astonishing rash that covered his back and torso and eventually elevated his liver enzymes. Just as well, as the drug cost was astronomical and economically prohibitive. His tiny skin cancer jumped into his lymph system and over time, showed up in bones all over his body leading to an agonizing spinal cord compression.
More and more skin lesions popped up on his head, his neck and his groin. We went to Barnes in St. Louis to try to get him into a clinical trial for one of the new immunological drugs. He was rejected, an unconscionable decision that was impossibly hard to absorb. Eventually our local oncologist was so desperate, he applied for the drug pembrolizumab or Keytruda, which was magically approved because of Michael’s terrible prognosis. And suddenly, within less than two weeks, the tumors began to disappear. He was to be a miracle responder, one of the small number who manage to wind up in the success cohort.
Within a few months, he was well, normal even. All through the various treatments, he’d had positive responses which gained us months that we used as a compressed retirement. With the prospect of death always threatening in the background, we chose to spend lots of private time together, traveling and making memories which would sustain me. We spent as much time as we could with our family, reveling in the everyday moments, a dinner, lounging in the afternoon on our kids’ back deck, going to movies or just reading in the same room. Suddenly it seemed anything was possible. At least in the short term.
But with 6 months of remission in the books, Michael experienced a profound spike in his liver enzymes. Our doctor felt compelled to stop treatment. I argued vociferously against this as he was taking other medications which could be implicated in the liver issue. Knowing that his disease could get active at any time, the doctor thought we might do a challenge once the enzymes returned to normal, to see what would happen. But the next thing we knew, our doctor was gone, the second oncologist we lost in a few years. So we started over with a new one. Each oncologist has a personal perspective and I knew right away that our new one was a more cautious individual than the previous one. She was opposed to taking the risk of a challenge and instead recommended continued full body scanning every three months. The year 2016 was treatment-free and we cautiously continued to make the most out of our time. But any time Michael was ill, whether with a cold or a dreaded case of shingles, I was alarmed at what I saw as a failure of his immune system.
By December of that year, his behavior was getting a bit peculiar. I was hyper-worried and in January we had two doctor appointments and two CT scans which indicated absence of disease. I couldn’t believe it. Michael was behaving oddly and changing perceptibly. After 45 years together, there are the things you just know. After a scary night less than 4 days after receiving a clean scan, I called the oncologist the following morning to say I was going to get Michael into the ER for a brain MRI, the one test he’d never had. The doctor said that those were hard to get in emergency rooms but I was absolutely determined. I used all the trust between us that we’d built over the years to get Michael to go with me to the hospital. He was wary and resistant but he believed in me. By the end of the day, we had test results which showed a brain cancer presentation that could only be likened to meningitis. His brain was filled with a sludgy cancer that infiltrated the ventricles but was undetectable by CAT scans.
The doctors said he had central nervous system lymphoma. But I fought back because I knew it was Merkel cell which is what it had always been from his first biopsy to his last. Most people with that metastatic disease just didn’t live long enough for the medical professionals to see what it looked like in the brain. An average lifespan following his diagnosis was 4 weeks. Michael chose a combination of awful whole brain radiation and Keytruda and managed to survive for 17 weeks. After a long hospital stay of 32 days and nights together, we managed to get home. For years, we’d discussed how he wanted to die. First and foremost, he wanted to stay alive. But absent that option, he wanted to die as undiminished as possible, not wasted away to a shell. He also wanted to be in his home, not in a medical venue. He sadly wondered if he’d ever have another good day, one in which he could feel okay. His desires became my mission. With endless encouragement, prodding and the most ingenious protein shakes I could concoct, we stayed at home. One lovely April day, we managed to get across the street to our daughter’s home to spend the afternoon, to sit together with our grandchildren and then go back to our own house, content with that feeling of normalcy. Our son who was abroad working on a postdoc, managed to stop his work and get home so he could share the last days of Michael’s life. He died a year ago today, peacefully, quietly and unwillingly, with me beside him, holding his hand.
I will always wonder about the might-have-beens. There were so many steps in our journey when a small adjustment could have made a difference. I used all of my powers, intellectual, emotional and persuasive to push things outside the box of standard medical care. I learned more about cancer and medicine than any English major would ever have thought possible. I don’t know what could’ve happened, if only. All I know is that cancer ultimately presented its final invoice to us, the price being Michael’s life which he lived and loved so well. This past year has been filled with many different experiences for me. I’ve been out in the world with people and also on my own a lot. I’m deep inside myself exploring, probing and searching for my answers, for a way to live that feels right for me. I remain in love with Michael. I expect I always will be. We had a bond that could withstand everything life tossed against it.
One of his favorite movies was The Ghost and Mrs. Muir. He watched it almost any time it appeared on late night tv. The story is one of a widow who occupies the home of a sea captain who’s died, but insists on being in his house with her, as if she’s the invader of his personal space. Of course, this isn’t a perfect metaphor for what’s happened to us. But I often feel that we will be in our home until it’s my turn to be done with whatever lies ahead of me. I didn’t know I could survive a minute, a week or a whole year without Michael. But here I am, still alive and evidently destined to go forward. So I will, holding him in my heart and feeling the buoyancy of his presence which shows up unexpectedly and fills me with unexpected sensations I’m learning to accept as my new normal. As Eleanor Roosevelt said, “You must do the thing which you think cannot do.” That’s exactly what I’m doing. The magic that Michael and I built helps me. I expect it will forever. One minute, one week, one year. On I go, on we go.
