Merkel Cell Carcinoma slide
Years ago I had a friend who was describing some symptoms that her mother had been experiencing for several weeks. 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 as a possible cause for the nagging problems. 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. Cancer is endlessly surprising. As cognitive beings, we naturally search for answers and reasons for what we can’t understand or what we didn’t expect. Everyone gets to decide what’s best for them. We found our own way through cancer.
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. Cancer started growing and played a 5 year cat and mouse game with my guy.
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 astonishing and economically prohibitive.
His tiny skin cancer jumped into his lymphatic system, and over time, showed up in bones all over his body causing 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 in 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. But after 6 months of treatment, Michael had 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 have caused the liver issues. Knowing that his disease could get active at any time, the doctor thought we should do a challenge to see what would happen. The next thing we knew, he 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 doctor was a more cautious individual than the previous one. She was opposed to taking the risk of a challenge and instead recommended continued scanning every three months. The year 2016 was treatment-free and we cautiously continued to make the most of our time. But any moment when 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 frightened and in January, we had two doctor appointments and 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 in the morning to say I was going to get him into the ER for a brain MRI, the one test he’d never had. The doctor said that those tests were hard to get in emergency, but I was absolutely determined and used all the trust we’d built over the years to get Michael to go with me to the hospital. By the end of the day, we had the test results which showed a brain cancer presentation that could only be likened to meningitis. The doctors said he had central nervous system lymphoma. I knew they were wrong. 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 the disease looked like in the brain. An average lifespan following his diagnosis was 4 weeks. Most people go directly to hospice. But Michael had triumphed before. He 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, of course, he wanted to stay alive. But absent that option, he wanted to die as undiminished as possible, not wasted away to a shell. And he wanted to be in his home, out of a medical venue, in the space where we’d led our lucky life. 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 and for the most part he still looked strong, with good color, not wasted. 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 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 I ever dreamed would have been possible for me, always a wordsmith, never a scientist. 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 full of many different experiences for me. I’ve been out in the world and also by myself. A lot. I’m deep inside myself exploring, probing and searching for my own 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 happened to us. But I often feel that we will be in our home together, 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 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. One minute, one week, one year. On I go, on we go. I miss him every day. Almost another full year has passed since I wrote this blog post. I still feel virtually the same as I did back then. I remain in love with Michael and I’m still mystified by the incredible connection that lives on between us, though he’s been dead almost two years. I’m still thinking away. And I’ve learned some things about cancer and what it can and can’t do. I wanted to share my reflections in the hope that they’ll help someone out there who’s having a similar experience.
First, my interest in the biological underpinnings of cancer has stuck with me. I still read a lot of scientific articles and have taken a number of science classes in the past year. Molecular biology had a big impact on me. I recognize that Michael’s cancer was a remarkably successful organism. That may sound odd, but the truth is, it managed to adapt and survive multiple forms of treatment and roar back stronger time after time. More than ever, I understand the complexity of trying to cure a disease that’s alive and mutating constantly. Knowing that no matter what a person’s attitude and strengths may be, there are some creatures that survive no matter what, changes the way you think about cancer. People who die from cancer aren’t losers and didn’t do anything wrong with their attitudes. They’re just overmatched. Individualized treatment seems to be the only real solution and in American medicine, that’s a heavy lift.
Secondly, for some of us caregivers, the trauma of the illness and death process leaves a state of mind that can only be likened to PTSD. I see the vestiges of all those desperate days in myself. I have sleep issues and still find myself stunned to realize that Michael is really dead. I can roll over in the night and wake myself, worried that I might be disturbing my guy and then remembering he’s gone. I’ve turned into somewhat of a germaphobe. I was so worried all the time about some random infection that might hurt Michael. So I’m always looking at how people sneeze or cough into their hands and touch surfaces, wanting to spray everything with Lysol and carrying Purell everywhere. I wonder if I’ll ever stop doing this neurotic stuff.
But there is the upside. Learning to live in every moment has stuck with me. I’m much better at keeping my perspective and not getting bowled over by the small stuff. I’m more mindful about how I choose to spend my time and with whom. I don’t want to waste any of it. I want to be the best version of myself. I spend time with my family. I spend time trying to take care of my friendships that have proved sustaining and meaningful. I appreciate nature every day. I garden in my attempt to create habitat for lots of animals while donating beauty to my surroundings. I read and I listen to lots of music. I try to learn something new and every day. I’m politically and socially engaged and I share my views and feelings in multiple ways. My life isn’t empty – it’s just less full.
I didn’t know what I’d be like without Michael. After 45 years together, I’m keenly aware that there’s not enough time in my life to ever experience anything that will ever approach the magnitude of what we shared. But I’m making an effort to compile our stories and share them with our children and their children, the ones here and the ones to come. Our saga is rich, and while we will wind up as dust mixed together in our garden, our history will live on. I’m satisfied with that assignment I’ve given myself and it motivates me to work even on the saddest days. I’ve made it through our anniversary this month. Upcoming are my birthday, the anniversary of his death and Michael’s birthday. They’ll be hard but easier than last year. The magical and inexplicable presence I feel with me every day helps. As a pretty grounded, realistic person, I never imagined I could feel such an ethereal companion. But whatever. As Michael frequently said, it is what it is. The good news is I’m finding a way forward that has brought quality to my life. In the end, there is life after cancer robs you. Who knew?