Michael and I stepped off into 2013 with our new regimen in place. We were concentrating on figuring out how to adapt to the knowledge that he was harboring a potentially deadly disease that could rear its head at any time. Simultaneously, we were trying to practice real mindfulness, squeezing our best possible days out of the present. After his radiation treatments, he was examined regularly for any signs of tumor tissue on his scan. I was grumbling at his doctors, dissatisfied that he had no future scans ordered, the way melanoma patients did. If Merkel cell was worse than that where were the scans? The doctors said it wasn’t in the protocols. I argued that there can’t be real protocols for an incurable disease. I decided to bring it up at every appointment.
Some years earlier, I had gotten trained in the art of lymphedema massage, a technique used to relieve backed up lymphatic fluid which occurs when lymph nodes are removed and the fluid creates swelling. Michael’s swelling was in his face and neck. I’d had some practice doing this for my mom years earlier when she’d had many lymph nodes removed during her mastectomy. I felt glad to have a hands-on way to be helpful in relieving some of his discomfort. In early June, when school ended, Michael and I had our long-delayed trip to Sanibel Island, cancelled the year before. Then I surprised him with a birthday gift, a journey to Panama to have a “boys’ trip” with our son, who was working on his PhD there. A biologist studying the physiology of tropical birds, our son hadn’t ever had a private trip with his dad. We’d had plenty of family vacations, but all of us thought there was a long future stretched out ahead of Michael, with plenty of time for the two of them down the road. The previous year’s Merkel Cell cancer diagnosis and subsequent treatment changed all that. We were living in the now instead of the future. There was no more counting on limitless time. Michael the historian was eager to see the Panama Canal, in addition to observing what his kid was doing with his research. The night before Michael was supposed to leave, I developed lower back pain and bled when I urinated. I’d had a kidney stone once before which was quite painful, but this didn’t feel as bad as that one. We got scared because my father had died from bladder cancer which presented only as blood in his urine. Michael wanted to cancel his trip, but I said, no way. The previous year, our kid had learned of Michael’s disease while he was alone in the rainforest. If there was something severely wrong with me, I didn’t want him finding that out, alone again. Michael took off on Sunday. By Tuesday, I was relieved to learn that I, indeed, only had kidney stones, and was thrilled that Michael was traipsing around with our kid, having a lifetime experience for both of them.
When Michael came home, we proceeded with a normal summer. I deferred dealing with my massive kidney stones until after our grandson moved on from our house to day care. Michael seemed to be doing well at his regular exams and we edged cautiously forward, hoping against hope that his remission would stick around. Looking back on that past year and four months, it was hard to believe we’d gone through an orphan cancer diagnosis and treatment, moved my mother from our house to assisted living, had our son return from Panama with a scary dengue-fever like illness, while I walked around for months with kidney stones. In the meantime, our daughter was pregnant with a second child. After grandson one was safely ensconced in day care, the plan was for me to have my kidney stones removed, rest for a few months and then get ready to care for baby number two who was due in January. Michael would return to his classroom in the fall. His scan, the first since November, 2012, was scheduled for November 8th, 2013. Getting it was a miracle after months of wrangling with the doctors and their protocols. A new team member, younger and a radiation oncologist, had been studying me carefully during our team meetings. He said one should be done for peace of mind. Finally. As our￼ family was coping with these issues, our longterm neighbors across the street were also dealing with cancer. The husband in that family had been struggling with a lethal form of leukemia and had gone through a bone marrow transplant. His wife and I were sharing the stress and fear of losing our spouses and were both worn out. Our families got together and decided we really needed a break.
So in October, shortly after my kidney procedure, we were gifted with a long weekend at a cushy resort in Wisconsin where we’d be pampered from head to toe. I was surprised, grateful and very unhappy. The reservation began on Friday, November 8th, the day of Michael’s long-awaited scan. I really didn’t want to go. My deep concern over that long gap between PET/CAT scans was always hovering a few millimeters below my surface. Although I was practicing living in the present, my inherent instinct to look down the road was always operating covertly. Old habits are indeed hard to break. I tried arguing my way out of the trip. Michael really wanted me to get the break before Thanksgiving, always a big bash at our house and his favorite holiday. He made sense but I was very uncomfortable and nervous. He told me that being present for the scan wasn’t necessary, that I would be with him when he got the results. Everyone else was pushing for the trip, optimistic and really excited because they’d taken me off guard, always a tough thing to do because I usually sniffed out the best-laid plans for me. So, reluctantly, half-heartedly, I packed up and took off for my very unwanted vacation. I wanted to be with Michael but I made an effort to appreciate the luxury of having nothing to do but be the recipient of massages, pedicures and poolside service. I tried to submerge my worries and enjoy the moment.
When I returned, Michael told me that his post-scan appointment had been moved from November 11th to the 12th. All my nerves went jangly as I felt my radar detecting a problem. Michael seemed alright but I couldn’t wait to get to that late afternoon appointment at the end of his school day. We sat in the lobby of the head and neck oncology department for a bit and were soon called back to the office. Within minutes, our surgeon entered the room with the scans and it was instantly apparent that we were in trouble. Unable to shake the crestfallen look on his face, he shoved the films up on his light board which lit up with red flashes indicating widespread bony metastatic disease. The cancer bomb had detonated.
He said he’d looked at the scans three times in utter disbelief, unable to wrap his mind around the involvement of so many bones. He thought it must be a different cancer – of the 1500 cases of MCC diagnosed per year, only 10% of distant metastases were to bone. He’d already scheduled a bone biopsy for Michael with an interventional radiologist to confirm the diagnosis and we were being sent to oncology where the cancer doctor would assume the team lead from him, our surgeon and guide. His nurse slipped into the room and told us that he’d practically been in tears and was horribly disappointed that he hadn’t been able to stop the disease progression. We asked him for a prognosis. He said that absent treatment, Michael might have two to three months of life, with treatment perhaps a few more. He looked utterly defeated. When we left the office, I felt so sorry for him that I gave him a big hug. He said that was the first time a patient’s family member had taken the time to feel something for him. But I truly felt for him and his profound disappointment.
We stumbled toward the elevators, numb. We called our kids and decided to head over to our daughter’s law office. Our son joined us there and the four of us lay entwined on her couch, sobbing in disbelief. An unforgettable moment in time. There was our girl with her pregnant belly, wondering if her father would live long enough to meet the new baby. Eventually we all went home. That night Michael and I clung to each other in our bed, alternately crying, talking, comforting each other, trying to grasp what would happen next. We slept fitfully and rose the next day to make plans. He needed to resign from school and prepare his students for that eruption in their lives.
I was already thinking of what I could do to help him face his mortality and give him succor in this dreadful time. He went through the bone biopsy which confirmed the MCC. Then we met with our oncologist, Dr. Luyun, who was now our primary team leader. We talked with him about the chemo regimen which would be rigorous – a cocktail of carboplatin and etoposide, given back-to-back, three days per week, every three weeks.
This was not a protocol designed for MCC, but rather one for other neuroendocrine cancers, most especially lung cancer. Chemotherapy was not considered to be truly effective for this disease, except in the short term for some lucky patients. The day after the last treatment in the cycle, Michael would be given a Neulasta injection to help support his immune system as his white blood cell ￼production, along with red blood cells and platelets, would take a big hit from this toxic regimen. We asked him how long he might live with this plan. Luyun replied, “maybe a year.” We contacted Dr. Bichakjian in Ann Arbor to see if he felt the treatment was appropriate. He was disappointed for us but confirmed that this choice was our best bet for now. We touched on the topic of clinical trials but discovered that traditional treatments needed to be exhausted before going that route. We asked Dr. Luyun if we could take some time to let Michael make his exit from school and have a normal Thanksgiving. He said a few weeks wouldn’t make a difference.
So we proceeded to the tasks at hand. Michael offered his retirement to his principal who sadly accepted it. Then he had to tell his kids which was very hard for him and them as well. I immediately started a Facebook support group for him which the school graciously shared with the kids, their families and the building staff. The group’s numbers burgeoned so quickly that Facebook trolls started advertising on its page. After that, people needed approval to join. For Michael, who was not a big social media person, this group became an important lifeline to the people and the job he loved so much. In addition, I contacted the school district to help establish a scholarship in Michael’s name that would be awarded annually to a student who excelled in the study of history and government. These small, concrete actions made me feel like there was actually something I could do to help my partner as he stared at his mortality. I don’t think either of us could really believe the horrific prognosis. He had no pain. He did start losing a little weight after he heard the bad news but he still looked strong. Imagining death is such an ephemeral experience, even when there’s nothing critical going on with your health. I think conceiving of the world going on without you is just too hard. Michael wasn’t ready to leave his life. He said he’d be willing to try anything to stay alive. “I’m not done yet,” he’d say. “I still have so much to do.”
Our kids came to his classroom on his last day to help carry out his personal possessions. All day, administrators and other teachers sat through a period of his teaching, out of respect for his skills. Kids brought gifts, cards and notes. He gave away certain precious classroom items to his closest colleagues. As we packed and watched him gather up the symbols of his career, one lone student sat in the classroom, struggling away on the Constitution test, a senior with learning disabilities who worked very hard and needed this exam in order to graduate. Michael had given him study aids and steady encouragement as we all milled around him. When it was time to go, Michael sat down to grade the exam. When he got to the end, he looked up with a grin and said, “Congratulations! You passed.” The boy’s face crumpled with relief and joy and he threw himself into Michael’s arms, saying thank you and then, good luck with your sickness. I don’t know if he really passed or not. The beauty of the moment was enough.
We tried to squeeze in some normal life. We went to the movies and saw Twelve Years a Slave which was so somber we could barely speak afterwards. We took a quick trip to Chicago to go to the Field Museum to see some exhibits and to eat at two of our favorite restaurants, Greek Islands and the original Uno’s Pizza. We lay in bed for hours holding each other. My journal describes those moments – “I am enveloped in love and lonelier than I’ve ever been.”
Next came what we thought would be Michael’s last Thanksgiving. Our family came including cousins, second cousins and anyone else from far away who feared they’d never see Michael again. From my journal – “As I prepared the food I felt overwhelmed, disconnected, detached. The food turned out delicious, maybe some of the best I’ve ever made. I only cried twice. I guess it was the right thing to do.” Treatment would begin the following week. We were as ready as we could be.