I first started to write my husband’s cancer story in 2018, just months after his death. I think it’s the most challenging writing effort I’ve ever made, including those complicated ones from back in my youth. I’m revisiting this now as I ponder whether to publish a book. Maybe reading it would help people navigate the nightmare. So here’s a look at the first chapter. I’ll see where I go from here.
Chapter 1
When I was a child, I remember the conversations at family gatherings when the adults invariably turned to the topic of health. Theirs, or that of friends and family. So boring. Endless droning about digestion, diabetes, heart disease and of course, cancer. My mother was especially talented at grisly descriptions of carbuncles, appalling surgeries, amputations and unexpected deaths. I tried to tune it out. All of this stuff had nothing to do with me. But the truth is, my mother was sick a lot, beginning in my early childhood, and continuing throughout my life. Anxiety about potential illness became my internal companion as the litany of problems expanded. My dad too, developed his own physical issues. By my late teens, I was always afraid.
Personally I was healthy and robust. But my body felt like a land mine which could explode at any moment. I was afraid of sickness. Even a cold was a threat. I was sure I was destined to die young. I spent way too much time thinking about the fragility of life. So I worked on myself to stay grounded in reality. Facts were facts. I was a decent athlete. I loved swimming. I had muscles. I started thinking I might make it past thirty. My interior conversations focused on survival. Eventually I developed hostility to the slightest physical problem that I developed. I figured that my burning hatred would douse any audacious bug that tried to get me.
When I met Michael and we fell in love, I was delighted to learn that he came from a crowd that had good healthy genes. Everyone lived to ripe old ages. I felt lucky to be with someone who’d most probably outlive me. He was big and strong and I figured I’d check out way before he did. My abandonment issues that were part of the constant fear from my mom’s illnesses receded into the background. I felt relief because no matter what happened to my parents, I knew I’d always have him. As we got older together, moving into our 40’s and 50’s, those gold-orange prescription bottles appeared on our shelves. We stood in front of them and laughed about the beginning of our inexorable decline. But aside from a few issues that Michael had, like a herniated disk or a torn Achilles’ tendon, we were still feeling pretty confident about our long range future. We were the boomers, after all. Destined to outdo our families at everything, including longevity. I referred to myself as sturdy peasant stock. In a former life I was the person sent to the Volga River with a wooden yoke across my shoulders, carrying back water-filled buckets on a ten mile trek back to the village. My now-aching knees held up well back then, until menopause hit and stole away the magic of estrogen and smooth gliding joints. And Michael? He was referred to as The Beast. He was invincible. He could lift anything, build anything and play multiple sports. He was like a superhero. As a teenager, he lifeguarded for three years. He saved a Boy Scout who fell off a raft into rushing white water. He hauled me to safety when I got stuck in a powerful undertow in the Gulf of Mexico. On his first day of teaching, he resuscitated a young girl with a heart condition and kept her alive until the paramedics arrived. He “loomed.” Once, when three drunken college students bumped into me on a sidewalk and cursed at me, he made them stand in a line and apologize to me. When the neighbor kid took all his money and bought a beater car from a bad egg who was taking advantage of him, Michael went and got the crooks to return the vehicle in addition to getting all the money back. An imposing man. I was safe and secure. All my jangly nerves, tuned over a lifetime, settled in his sphere. He was my omnipresent sedation. But there were some issues for both of us which stemmed from our youth.
We grew up during the years when being outside without sunscreen was the norm. We both suffered terrible burns. He was a fair skinned guy with reddish hair, the son of a blonde and the nephew of a carrot top. I was pink and white, but toasted myself regularly and had multiple blistering episodes. Being red or tan was supposed to be healthy. People looked better with a tan. We used baby oil and Bain Du Soleil to deepen our color. Coppertone and Sea and Ski were applied mostly for aroma. A history of skin cancer ran in both our families. Michael’s heritage was worse than mine as his parents had more leisure time spent sunning on vacations and living in Florida. His father was stationed in Hawaii during World War II and tanned constantly. They began developing basal and squamous cell carcinomas in their 50’s. When caught early, those cancers were rendered harmless by excision. Both his parents had regular dermatology appointments and were frequently treated with liquid nitrogen for pre-cancerous lesions and/or mini-surgeries. Eventually, the more dangerous melanoma showed up on his mother’s body twice, but the tumors were removed before they had a chance to metastasize from her skin’s surface. His parents were well into their 80’s when these cancers became a commonplace occurrence.
In my family, there were a few basal and squamous cell tumors which were dispensed with easily. But then, my older sister developed melanoma. Hers was caught before it spread but Michael and I realized we’d better get serious about having our skin checked on a regular basis. We both had numerous moles removed and were monitored every three to six months. We believed that the thinning of the ozone layer that occurred during our lifetime allowed for more ultraviolet ray damage to our tender major organ. Which is exactly what the skin is-a delicate organ. We laughingly called our regular doctor visits slice and dice appointments. I had one cancer and many pre-cancerous lesions burned or removed. Michael’s problems were almost always malignant. Our doctor prescribed numerous topical treatments for him to try fending off what was likely to become cancerous. We applied them to his face, back and chest which looked macerated and gory for periods of time. But we felt like these were manageable problems. We were being vigilant and cautious and felt that as long as melanoma could be avoided or treated before it got too aggressive we’d be ok. The price we had to pay for our careless youth wasn’t as bad as it could have been.
The spring of 2012 was a good time for us. We’d lived together for forty years by then. The struggles of young couples in sorting themselves out were far behind us. We were among the fortunate people who’d fallen more deeply in love with each year we spent together. Our first ten years were spent on our own so we had plenty of time for wonderful, carefree adventures. When our children came along, we were ready. We savored our family life, through the great times and the bumpy ones. Mostly we felt lucky that we had healthy, successful kids who were really decent people that grew up to care about the world. When they moved on in their lives, we didn’t go through an empty nest period, but rather returned to those first ten years’ of couple practice and picked up where we left off, truly reveling in each other’s company. Life is never perfect but our little cocoon was a happy place. One night in February, 2012, we were in our bedroom getting ready for sleep when I noticed a small reddish-blue blemish on Michael’s left cheek. It was tiny and unremarkable except for the fact that it was new. We looked at it with a flashlight and magnifying mirror and decided that if it was anything at all, a basal cell carcinoma was the most likely diagnosis. He’d had many of those before. But we were cautious. Both of us had our regular dermatology checks coming up, mine in March and his in April. I suggested that we switch appointments since he had a new lesion but he said he didn’t think that was necessary. And he noted that as long as he didn’t have melanoma, he wasn’t going to be worried. So we left our appointments as they were.
At this point in time, Michael was teaching high school government and history classes. In his 50’s, he’d walked away from his partnership in a music store that he’d built for 27 years. With the advent of big box stores like Best Buy and free music downloads from the internet, business was shrinking, frustrating and depressing. Michael had spent years as an alderman in our community, as the plan commission chairman and as an active participant in a variety of community service programs. But he was looking for something new and felt his political science bachelor’s degree was relatively useless. So he went back to college, took 30 undergraduate education hours and became certified to teach secondary school. Eventually he went on to graduate school for a Master’s in the teaching of US History. And he found his vocation. He literally ran to school every morning. He was usually the first one in the building. He took on the classes assigned in his department and eventually wrote his own class, Modern American History through Film and Music. A blend of all his favorite loves in one blaring classroom. He worked constantly, coming home late afternoons, resting for a bit, and eating dinner before retreating to his “cave” where he happily tweaked and refined his units with total intensity. I worried about his long hours but he was truly happy. I had retired from a thirty-plus years job as a public official. I was a certified professional but mostly loved having a flexible job working with one of my best friends who made sure I was comfortable and able to mother my kids without pressure. When she retired, I worked awhile longer, but when my daughter became pregnant, I left work to care for her baby, hoping she’d never have the early years day care woes that I went through as a young mom. In addition, we’d moved my elderly mother, who’d made it through her dictionary of diseases, into our home to care for her as she became less able to fend for herself. Life was good.
On April 17th, 2012, Michael went to his dermatology appointment and his doctor examined the new small blemish on his left cheek. She said she was 95% sure that it was a basal cell carcinoma and performed a biopsy immediately. Michael came home with a small band-aid and the usual instructions on how to keep his wound clean and ensure that it would heal with little scarring.
By this time I was sixty and Michael was sixty two. We’d begun to have conversations about mortality that go along with moving into the decades that suddenly feel older. My father, who died at a disappointingly early sixty-seven used to talk with me about how if you were lucky enough to avoid serious illness in your 50’s and 60’s and make it to seventy, you could often just cruise for awhile and be ok. His own parents had died at thirty-nine and fifty-four. So amazingly young. Both he and my mother had developed cancer just weeks apart in 1989. His was bladder, hers was breast. I remember the phone calls coming into my office informing me of the malignancies. I remember it was then that I realized we were all one phone call away from our lives turning upside down. A week after Michael’s biopsy, he was teaching. I was upstairs with my grandson, trying to get him down for a nap. My cell phone, which was in my pocket began to vibrate. When I looked at the incoming number, I realized that it was the dermatology office. I slipped out of my grandson’s room and in a whisper, answered the phone. I heard our dermatologist’s voice and felt a surge of fear. She told me I needed to sit down. My instant thought was “melanoma.” But then she said I needed to get Michael out of school immediately because he had an appointment with a head and neck cancer surgeon in two and a half hours. I said, “What in the world is this?” And for the first time in reference to my personal life, I heard the words, Merkel Cell Carcinoma. Unlike what we’re led to believe, melanoma is not the deadliest form of skin cancer. That title belongs to Merkel Cell which was what Michael’s biopsy showed. Time being of the essence in this case was a classic understatement. She told me she had hope because it still seemed he was in an early stage, based on the size of the lesion. She’d never had a Merkel Cell patient in all her years of practice. The rare bird, one of the orphan diseases. At that time, there were about 1500 cases diagnosed per year in this country. I hung up the phone, contacted Michael at school and ran to my computer. I’d heard of this disease which most often struck people who were elderly or who had compromised immune systems from a friend whose father had the disease. I remember her telling me that the website she found about it was so terrifying she could barely look at it. Michael arrived quickly from school and we sat and read together. At that time information was scant because so few people got the disease. Those who did and whose tumors metastasized had a limited lifespan. I remember looking at a small chart in a blue box that analyzed data on about 2600 patients gathered over several years. At the bottom it stated that 277 were alive 5 years after diagnosis. I turned to Michael and said, “You need to be 278.” We were now the people whose lives had been upended by the one life-altering phone call.
