Right now, I have a number of friends and family members who are coping with cancer. It’s been 13 years since Michael’s initial diagnosis of Merkel cell carcinoma and 8 years since his death. Those numbers seem so hard to believe as memories of those days are still so vivid. My conversations with those still coping with the morass of cancer led me back to these posts that I was writing to describe our experiences from back then. Maybe a few people will find something that resonates…
After completing a cancer treatment, our local oncology department has a tradition of having the departing patient ring a bell to signify the end of an arduous journey. Michael just wanted to get away and head into his old life. I don’t think he really believed that this radiation had cured him and he was anxious to get to get back to school, feeling like he wanted to attack all the work that he so very much wanted to do. “I’m not done yet, he’d say.” But he rang the bell anyway. He was also given the option of saving the hard facial mask he’d donned thirty times. That went straight into the garbage. He said he never wanted to see it again and would never use another one, ever. I think it may have been the first time he’d admitted how incredibly hard it had been for him to be bolted underneath that thing all those days. I thought it was positively medieval although I understood its real purpose.
We were now in the waiting period between treatment and the next scan. During the fall of 2012, the worst side effects of the radiation diminished and Michael regained weight and strength. Always an avid exerciser, he went back to running and biking.
Those hard, scary months between May and August receded into the past, rapidly replaced by what had been our normal life for so much longer. But there were subtle differences that we were aware of every day. Now cancer was lurking in the corners of our world, shadowing us, no matter what we were doing. I suspect there are some people who would go forward feeling that they’d put the trauma behind them, papering over the bad memories as fast as they could. With a diagnosis like Merkel cell, that was virtually impossible for us to do. We knew there had been metastasis, albeit a small one. But that fact was impossible for us to completely ignore. Michael, always the quieter of the two of us, was better at acting like our world was unchanged. Not me. As long as we’d be living on a three month check-up routine, both with his surgeon and our dermatologist, I was like the dog with the bone, gnawing away at this mysterious invader, trying to get a handle on what might lie ahead for us. I was already undone by the first misstep in our road, the fact that Michael could have swapped his dermatology appointment for mine which had been over a month earlier. I’d made the offer to him to switch his with mine but he didn’t realize that anything scarier than melanoma was out there.
His lesion was small and very different looking than melanoma. When we learned about MCC, one of its benchmarks was the speed with which it grew. I’ll always wonder if that extra month would have made the difference in stopping the cancer from exploiting those 2 little metastatic lymph nodes out of all 66 that he’d had removed. Only two. I have to smack myself in the head and say, spilt milk. Can’t go backwards, only ahead. After that early quick research that I’d done after the initial diagnosis, my studying took on a whole new life. An English major, I hadn’t spent much time immersed in science although I did love biology and the natural world. Because my mom had been sick so often in my life, I’d learned a lot about what can happen in our bodies and had gone through breast, thyroid and bladder cancer, respectively, with both my parents .
Knowledge was my antidote to fear and anxiety. This MCC beast was no garden variety cancer. So I buckled up and took the plunge into the real science you could dig for on the Internet. I used PubMed a lot to read about studies, experiments and theories. I read about clinical trials and joined groups whose topics were neuroendocrine cancers. I dug through every website that referred to Merkel cell. When I didn’t understand the scientific language, I looked it all up. Surprisingly, I started getting comfortable in what early in my life, had seemed an inaccessible part of the world. I also saw the names and locations of the doctors and research facilities that popped up regularly, the people who were focusing on Michael’s disease. This was a delicate time for us. Michael moved slowly in life while I tended to zip along fast. The amount of information I was accumulating would consume me as I cast about for answers. I needed to be careful not to overwhelm him and his very different approach to this nagging fear we had.
What seemed to work best was when I would come up with some practical things for him to do, like taking immune-boosting supplements and trying to get him to compromise about the crazy long hours he worked. That was a big issue between us. He was so in love with teaching that he worked every night until midnight or one a.m. and then got up at 6, generally arriving at school by 7 and staying until 4 p.m. He’d come home, take a short nap, eat dinner and start all over again. I argued with him about this schedule which I thought would be arduous for someone half his age. But he was stubborn and relentless and I attempted to keep my mouth shut to avoid stress between us. At least when I could. I knew he was mustering his resources internally for whatever lay ahead. He simply had a different style than me, not surprising after all our decades together. I was usually stamping my foot at the finish line while he meandered slowly along the road.
Meanwhile, fall moved along. He had a check-up in September and then the first big deal, a PET/CAT scan scheduled for November 8th. Having had no systemic treatment, this was scary, as any random cells that could have moved through his lymphatic system or bloodstream would have had an opportunity to grow. Such anxiety. We had to wait a few days for the results which was really hard. Life feels so out of control during those waits, which it always actually is, but this extra load felt so heavy. Eventually the surgeon himself called with the results, elated because the scans were clean. We were so relieved and yet, very cautious. MCC tends to return in the same vicinity in which it was first detected. Michael was being examined in his head and neck area. But he had a 6’4″ body with lots of room for nasty cancer cells to hide. I was not content. But for this time he was okay. He and I were learning to live in our moments, rather than planning too far ahead. We had our usual family gathering for Thanksgiving, Michael’s favorite holiday. We’d had to cancel a trip to Sanibel Island that we had planned for June, 2012, right after his diagnosis. We rescheduled it for June, 2013.
In December, 2012, we headed to Starved Rock for what had become an annual holiday trip for us and our kids. I don’t recall who went that year but we did and we savored every moment, from the hiking in the woods, to our favorite room in the lodge, to the big dining room fireplace and the homemade fudge. We swam in the big pool encircled by tall glass windows so you can watch the snow fall while you’re being beachy. We lolled in the hot tub. We came back to share our annual New Year’s Eve dinner with our family and friends at Biaggi’s boisterous restaurant. And then it was 2013.
Michael continued his 3 month checkups. I was still taking care of our grandson, so I didn’t join him for most of those 3-month appointments until a meeting in June, 2013, which included our entire medical team, the surgeon, the oncologist and the radiation oncologist. This meeting was an annual event provided for any patient who was still negative for disease after treatment. Interesting cases like Michael’s were routinely discussed at our clinic’s tumor board so that new perspectives and ideas could be shared. We had a new, younger radiation oncologist at this confab, as our original one required a kidney transplant and was off with his own issues. I’d had a whole year to do research and I walked into that room loaded with ideas and questions. Michael let me run point on this because I do well in confrontations. The conversation kicked off with our surgeon being pleased at Michael’s stability and progress. We even had a letter from our Dr. Chris Bichakjian, an MCC specialist in Michigan, who felt that since Michael was a year out from his initial diagnosis, his odds of surviving MCC were as high as 70%. But then there was me. I couldn’t understand the protocols for treatment. To me, a protocol meant that if you employed a series of measures, you could expect a cure, an absence of disease. But MCC was incurable. To me, that translated into the fact that if you were lucky and fell in the center of a bell curve, you could have certain expectations. But that’s not how cancer works for everyone. I was frustrated that Michael hadn’t been scanned since November of 2012. I asked the team how often melanoma patients were given PET/CT scans. They responded with “every three months.” If Michael’s cancer was so much more lethal, then why wasn’t he being scanned that frequently? Their answer was that only one post-surgical scan was recommended by the protocol. Around and around we went. I noticed that the new young radiation oncologist was sizing me up. His name is Dr. Sinisa Stanic. He finally proposed a compromise, a follow-up scan in November, 2013, a year from Michael’s last one. He said, let’s do this for peace of mind. I wasn’t exactly happy but this was better than nothing. I realized that doctors like staying in their proscribed lines. They need them to keep things stable, to give themselves a structure in which to manage what is basically the wild west, the individuality of a patient’s response. In my regular I was always pushing outside the lines, casting boundaries aside. I think that’s what advocates should be doing anyway. In any case, we scheduled scans for November 8th, 2013, an exact year from the last one.
School ended for Michael and we took off for Sanibel, at long last. I had the summer to care for my grandson who was scheduled to start day care in August at just under three years old.
He was ready and I was grateful to have been able to complete my commitment to my kids. In the meantime, my daughter was pregnant again and I would have a few months off before becoming a caregiver again. I had moved my mom into an assisted living facility and she was as okay as she could be.
I wished living together had worked out but the combination of everyone’s needs, including mine, was just too much. After our Florida trip, our whole family released our collective breaths and tried to enjoy being together with our relative good news. The next big event would happen in November. I was still in my mental trench, studying, learning more.
Michael was in his summer mode, exercising, gardening and tweaking his classes for the following year. Our relationship was strong and intimate, peppered by our life-long issues of different style and speed modes, but resilient. We made a good team and we moved forward.
