Somehow we are in the beginning of 2016. After the cancer ravages of 2015, the devolution of Michael’s health from his excellent status at the beginning of the year, to his rejection from a crucial clinical trial, to his coming close to death before receiving the immunological drug Keytruda off-trial, we were astonished that he was still breathing. Somewhere in the midst of that year of terror, my brother, my mother and my treasured dog died. A long intimate friendship between our family and another came apart. I hadn’t any real down time to process all those events. I was intensely focused on Michael and any possible treatment I might unearth to keep him alive. The winter holidays were so unexpected. Michael met with many of his former students who were home visiting, on winter break from college. He had lunch with his school colleagues and arranged some guest teaching days, starved for more time in the classroom. He was still suffering from the toothache that had been haunting him since the previous September. He’d been on antibiotics several times in an effort to avoid any invasive procedures. In addition we were expecting company. People who were thrilled that Michael had survived were wanting to see him. Our friend Peg came from Denver for a visit. After a whirling through so many events, Michael, a master of understatement, said he didn’t feel 100% and collapsed with fatigue. We were expecting yet another visitor, our dear friend Brian from New Mexico. I was worried. He was living as hard as hr could and I understood that drive. But only six months earlier, Michael’s body was carrying a huge cancer load. How much was still cruising around inside of him was was daily question. Despite the positive activities, between his scans, there was plenty of time to bounce between hope and fear of the unknown.
Our son was temporarily home, soon to be departing for his field work in Panama, a critical part of his biology Phd. Michael had made a wish list of things he’d like to see before he died. Having our kid finish his doctorate was right at the top of it.
I was trying to practice living one day at a time. Shutting my brain down, even for short periods, was hugely challenging for me. I was constantly reading all the latest Merkel cell research, trying to stay current, in case things quickly went south. No cancer is easy, but the rare ones have so few treatment options. I hadn’t gotten over my bitterness about Michael having been denied access to the clinical trial in St. Louis, which was testing a targeted therapy drug, essentially quite like Keytruda. The Barnes principal investigator was disinterested in us and his nurse was absolutely cold and detached, telling Michael to go back home to get sicker and return another day. On the anniversary of that rejection, I finally wrote to that doctor and his supervisor, unleashing the hostility that had been eating away at me during the last painful year. Here are a couple of excerpts from that letter. The following year I looked up the trial and found that this doctor had disappeared as the principal investigator. I hope I had something to do with that.
To add to our worries, Dr. Zhang, our second oncologist in a year, informed us that he would be departing our cancer clinic in the next couple of months. He recommended that we continue with his old friend and colleague, Dr. Zhao. We heard this news with a mixture of sadness, fear and trepidation. Zhang had proven to be smart, a positive collaborator and a risk-taker, an important combination for a patient dealing with a little understood disease.
His help in getting Keytruda off-trial in 2015 was daring. I thought of him as kind of a medical gunslinger. More adjustments ahead for us. As a pre-emptive move, I dashed off letters of inquiry to other principal investigators of Merkel cell clinical trials to see what might be possible in case we ran into trouble. I could scarcely believe my audacity in reaching out to these people. I told myself that as the saying goes, necessity is the mother of invention. We moved forward to the next appointment, living as well as we could in the spaces between blood tests and scans.
On January 15th, 2016, Michael and I went to Dr. Zhang’s office to be greeted with the bad news that his latest blood work showed that all three of Michael’s liver enzymes were astronomically elevated, and that there would be no Keytruda treatment that day. Instead he was placed on a big dose of steroids to try to reduce the liver inflammation. Two more blood tests were scheduled along with another meeting with Zhang at the end of the week. We were completely baffled. Michael was taking antibiotics and pain meds for his toothache. Why was the doctor’s assumption that it had to be the life-saving Keytruda that was the culprit for the liver flare, rather than the other meds or a synergistic relationship between all of them? All the positive feelings about Michael’s incredible rebound seemed to fizzle away. I was filled with questions. What was certain was that steroids suppress the immune system, allowing an opportunity for the cancer to reassert itself. A nerve-wracking time, to say the least. Dr. Zhang was not available for our next appointment so we met with his colleague and our next oncologist, Dr. Zhao. The liver enzymes had improved but she was convinced that Keytruda was too dangerous to administer again. My immediate sense of her was that she was a strictly “between the lines” type of doctor, which I viewed as a problem.
We moved into a waiting period. On February 1st, Michael developed a cold and cough. What was once an average illness now carried the weight of a terrifying episode. Normal, whatever that was, has disappeared. Dr. Zhang ordered a liver scan for mid-month. When Michael’s cold happily resolved, we hit the road to Chicago to just feel like we were taking advantage of the fact, that despite all the uncertainty, we were still together, alive. The rhythm of our comfortability and love kicked in and we shoved away the fears for a few days. Years of practice at being us were balm to our jangled nerves.
Mid-February brought the liver scan. Tapered off the steroids, Michael’s his enzymes were almost normal but the scan showed the unexpected, a mild diffuse fatty liver. His primary doctor had weighed in with the opinion that a slightly abnormal liver which has a hard time metabolizing drugs, could mean any drug was a potential problem. We met for the last time with Dr. Zhang who was afraid that administering more Keytruda could bring on liver failure. With the virtual certainty of cancer returning without treatment, we argued for a moderate approach – trying a half dose of the drug, monitoring carefully for enzyme problems and quickly restarting steroids if there was another liver flare. Zhang agreed to this, provided we wait for a month to let Michael’s body rest. We concurred and prepared for another trip in our quickly devised retirement. Off we went to Puerto Vallarta, Mexico in the beginning of March.
For what seemed like eons, I’d been feeling as if I was living in the Mel Brooks film “High Anxiety.” The tension of the past year had been unrelenting. In addition to the tremendous pressure of Michael’s condition and treatment, I’d been trying to pay attention to my own health. A visit to my doctor brought the news that thyroid nodules which she’d been monitoring in me have changed in size and now required a biopsy. As my mom had thyroid cancer, that felt unnerving to me. In addition, my knees were incredibly painful with intermittent swelling in both the front and backs of them. Although I knew they were arthritic with no cartilage, I now am thinking everything is cancer. I terrified myself trying to imagine that Michael and I were simultaneously sick and in need of treatment. That actually happened to my parents in 1989 when they were both diagnosed with cancer within five weeks of each other. All my childhood fears associated with my mother’s constant health problems were being exacerbated by our current situation. I was trying hard to push all the negative thoughts away so we could live in the moments we have, yanking every second of intimacy and comfort out of them. I cast money anxieties away too, knowing that this accelerated and brief retirement was likely all we were ever going to have together. Stoically we boarded a United Airlines jet in Chicago and flew southwest to Mexico in early March.
We’d chosen the type of resort where relaxation is effortless. The place was beautiful as was our room. We intended to do nothing but stay in bed, make love, read, eat, sleep, swim and repeat the same routine every day. We threw in a little sightseeing, but mostly this time was for restoring our drained energy and forget all things medical. Michael had a sore shoulder from too much baseball and volleyball for many years, and his achy tooth. I had my bad knees. But the forgiving water helped. We lounged by the pool, ordering drinks and lunch. I lay in the water, staring up at the frigate birds which cruised overhead. Michael read and dozed. He looked healthy, regardless of what may have been happening below the surface. We soaked ourselves in the hot tub. For a week, we lived in a fantasy.
Then it was over. We went back home. Together we felt solid and reenergized, but indeed, we were right back in the same spot, looking￼ at the unchanged realities before us. I had my thyroid biopsy which was thankfully negative. Michael took advantage of being off treatment to have his teeth fixed. He also saw an orthopedic person about his shoulder and got a cortisone shot which provided relief. We were approaching the end of March with blood tests and a scan ahead. Michael went for long bike rides and looked like himself. I was reading books and planning my garden. Soon our son would return from his field work in Panama and present his exit seminar for his PhD. He’s told me he’s dedicating it to Michael who will cry when he hears that. One of his goals was to live long enough to see our boy finish his arduous work. Both of our kids have exceeded our accomplishments. Sharing in that together is priceless. Michael’s blood remained essentially normal and remarkably, his scan showed only two potentially cancerous spots that were tiny. Conservative Dr. Zhao didn’t want to re-challenge him with Keytruda until there was more disease. I was uncertain about this approach but decided to go with the flow. I was writing constantly in my journal. “Life is filled with such elevating joy and crushing pain. The poignance is too much.”
The exit seminar was a success. We couldn’t be prouder of our kid. Now we are at the end of April. Our wedding anniversary was May 1st. It’s our fifth “last anniversary” which we count from Michael’s diagnosis. Will it be our last? Michael wrote me a note to go with my anniversary flowers which says he’ll do anything to get another one. He’s already gone through so much. Watching him eat a hearty anniversary surf and turf dinner gives me such pleasure and satisfaction. He gave me a ridiculous Roger Federer satin pillow case as a gift. We’d had a few great months. Next up was a trip to Memphis to visit the Civil Rights Museum and Graceland.
Describing the reality of taking our very deliberately chosen trips is complicated. Always just below the surface was the awareness that we were not going to live to a ripe old age together. I can’t say we were entirely without hope, but that hope has small dimensions instead of unlimited vistas. As Michael needed constant monitoring we couldn’t go too far away for too long. Choosing our destinations meant evaluating what has been important in our lives, both as individuals and partners. We made it to the Rock and Roll Hall of Fame and the National Baseball Hall of Fame. We made it to presidential homesites and libraries, battlefields and major historic sites. We visited art galleries and oceans. The main thing now was to make sure that we saw what we only want to share with each other. Every one of those places was obviously impossible. But in Memphis, the Civil Rights Museum was essential for us who’d shared a lifetime of activism and belief in civil rights. And then there was Elvis, Sun Records and the famous Memphis Recording Studio, another must for music lovers like us. There was BB King and barbecue and a manageable drive. “We are excellent travel partners. Yesterday Michael said he felt￼￼ like we were the only two people in the world sometimes, in a rhythm that isn’t shared￼ with anyone￼ else. We still have a glorious intimacy on every level, especially amazing given all his treatments.”
We both cried at the pain and power of the museum. So much dreadful history that we grew up with, watching on our televisions while we were kids and then the history of all the horror that came before we were alive. We cried at Graceland too, thinking of how this innocent gifted singer was basically eaten alive by greedy manipulators and a ravenous, insatiable public. We spent some time at the studios where so many young rock and rollers got their big breaks, rode a riverboat on the Mississippi, listened to live music and ate at Gus’s Famous Fried Chicken restaurant. Then as fast as it came, vacation was over and we were in scan week. I was working on managing my anticipatory grief. A tall order for me. Michael was working his way through a list of life goals, some small and manageable, others daunting. Some days, he was quiet and dark. He’d always had days like that, a product of his unhappy early life. I tried imagining the alienation he felt from his own body, and bearing the constant weight of imminent death. We knew other people who’d died recently or who were in hospice. One minute at a time. That’s how we were living. Miraculously, the mid-May scan was NED, negative for disease. Michael hadn’t had treatment since December. Maybe his immune system was still amped up from Keytruda. We were glad to take whatever miracle was happening.
During this health reprieve, we decided that we finally had the time to adopt a dog. Flash had been gone almost a year. A shelter was having an adoption event at a local pet store. I went to look around and instantly fell in love with a tiny black puppy whose older, larger and beautiful sister had been adopted in advance. I called Michael who was annoyed that I’d picked out a dog without him but he came to meet her and could feel my happiness. So he agreed. We named her Gracie and brought her home. She seemed smart and easy to be with but by the next day, I could see she wasn’t healthy. The shelter had arranged a first free vet appointment with someone with whom they had a contractual arrangement. We took her in Monday morning and were given antibiotics for a respiratory infection. I felt like there was something more and arranged for her to see our own vet the next day. After her exam, the our doctor said she thought that Gracie had a neurological problem and that it didn’t bode well, especially considering Michael’s situation. We had to relinquish her the next day, after a difficult battle with the original shelter. I think that episode drained away all my reserves of love for a pet. I’ve never felt the energy of real pet love since that puppy. But we still had our little window of opportunity. There was a black cocker spaniel at the Humane Society. When Michael was a kid he had one that looked almost exactly the same, Pudding, who was hit by a car￼ and left a hole in Michael’s heart. I was neutral but wanted him to be happy. We were chosen as her new family and so we had Rosie. Michael was in bliss despite the fact that the Humane Society said she was five when she was actually eleven. He was in love. A day later, he developed a terrible case of shingles. I was immediately terrified. You get shingles when your immune system is suppressed. Was cancer coming right behind this painful condition?
The June scans happened. It felt like there wasn’t enough time between them but Michael was still stable, no change in disease load. No one on his care team understood this – the facility tumor board says, “more power to him.” So on we went. I have convinced Michael to sell his music collection. We’d sold some of his collectibles when he’d gone back to school but we still had over 7500 pieces of vinyl and CD’s from his 27 years of owning a record store. I knew I couldn’t face the task of unloading them when he was gone. He entertained several offers and finally chose a buyer who owned an independent store in St. Louis. Our music room would be emptied in a day, come August. That was one of the most sobering acknowledgements of the future that we faced together. Tempering the moment however, was his announcement that he really wanted to buy a motorcycle with some of the cash. I’d made him sell his first one once I became pregnant so many years before, hoping to shrink the odds of my becoming a single parent. So I said, no, don’t be absurd. Then I forgot about it. The July scan came rolling around and was again clean. Impossible to fathom but we moved forward, spending time with our kids and grandkids, taking a day trip to Indianapolis and trying to feel normal. I spend time trying not to focus on thinking about everything Michael was likely to miss in the future. I’d watched my mom attend my kids’ events without my dad. I could still hear her wistful voice saying how much he would have loved watching them play basketball, dad’s favorite sport. I pushed those thoughts away.
In August, we got back to our place in Lakeside, Michigan which was brief but wonderful. Before the next scan, we squeezed in a long weekend with dear old friends in Oconomowoc, Wisconsin. So much lake time. We felt otherworldly, living our best lives under the onus of his mysterious Merkel cell which was in a deep snooze. But we were managing to enjoy ourselves, except for the occasional times when we looked too far ahead. Staying in the present must be easier for people who were more Zen than me.
We got another clean scan in August. We decided to go for another big trip in September. I was obsessed with seeing the National Parks of Utah. And I want to share their majesty with Michael. So I made the plans, a flight to Denver, a car rental and then a big push through Arches, Canyonlands, Zion and Bryce. I felt nervous that this could be too big a stretch for us but how do I know if there’ll be another chance? The trip was set. Meanwhile, one afternoon Michael sheepishly sat me down to give me what he said was both bad and good news. I braced myself for hearing he’d found a new lump somewhere. Instead he told me that￼ he’d sold the music collection for more than he told me and had bought himself a used Harley. The good news was that he had money left over to give me. I tried remembering that I shouldn’t want to kill someone who had cancer. I was so furious. Given the circumstances, though, I managed to put aside my anger. He’d given himself a life wish, one I couldn’t feel but that I recognized. He was always wanting these rushes that I’ve never felt. I got it. A Harley at last. Unreal.
We headed west. The Utah trip was magnificent and grueling. Michael developed gout and a cough. I wavered between awe at what we were experiencing and anxiety about his health. In the end, both of us were glad we did it.
Michael recovered from the respiratory infection slowly through the month of October. We had a big event that month – our daughter was being inducted into her university’s athletic hall of fame. The whole￼ family attended that event. A few weeks later, the Chicago Cubs, Michael’s beloved sports team finally won the World Series. Ticking that long-hoped for event off his list was a huge deal for him.
The national election happened and our whole family was stunned and grieving about Trump being president. Our son was getting ready to leave for a postdoc in Guam. But first there was another Thanksgiving and another scan. We got through the holiday, amazed that it was our fourth since that awful one in 2013, when Michael was given only a few months to live without treatment. Maybe a year with chemo. What a road we’d traveled since then. The November scan was negative. December brought departures and family going in different directions for the holidays. Michael and I zipped off to Starved Rock on our own for two days. Always magical, I took this happy photo of Michael at breakfast.
I was a little worried because he’d gotten sick to his stomach twice after eating his favorite seafood dish in the past few weeks. Maybe he’d suddenly become allergic? Who knew ? We were navigating the political situation, bumps in our kids’ lives and our own anxieties about his disease. Michael was featured in an article in our local newspaper which followed the course of his cancer journey. Both of us felt awkward about it. On ￼December 31st, we had our New Year’s dinner at our favorite restaurant, alone for the first time in years. Our family and friends were all dispersed. The service was unusually lousy and the food disappointing. We were both somewhat disgruntled but we went home happy to be together to ring in a new year, even though it is fraught with unknown but expected challenges. Goodbye, 2016, the year of nerve wracking remission and joy. Just like life.