*This is a continuation of Chapter 11 – Be 278, my story of living through an orphan cancer with my husband who died in May, 2017. All previous chapters can be found on this site. They’re hard to write so there are time lapses between them.
The beginning of 2016. After the 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 are astonished that he is still breathing. Somewhere in the midst of the terror, my brother, my mother and my treasured dog died. A long intimate friendship between our family and another came apart. I haven’t had any real time to process all those events. I am intensely focused on Michael and anything I can 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. 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. Our friend Peg came from Denver for a visit. After a whirl of 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. Six months earlier, Michael’s body was carrying a huge cancer load. How much is still cruising around inside of him is our daily question. Between scans, there’s plenty of time to bounce between hope and fear.
I’m trying to practice living one day at a time. Shutting my brain down is hugely challenging for me. I’m constantly reading all the latest Merkel cell research, trying to stay current in case things quickly go south. I haven’t gotten over my bitterness about Michael having been denied access to the clinical trial in St. Louis, which was testing a 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, informs us that he will be departing our cancer clinic in the next couple of months. He recommends that we continue with his old friend and colleague, Dr. Zhao. We hear this news with a mixture of sadness, fear and trepidation. Zhang has 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 dash off letters of inquiry to other principal investigators of Merkel cell clinical trials to see what’s possible in case we run into trouble. I can scarcely believe my audacity in reaching out to these people. I tell myself that as the saying goes, necessity is the mother of invention. We move forward to the next appointment, living as well as we can 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 is not available for the next appointment so we meet with his colleague and our next oncologist, Dr. Zhao. The liver enzymes improved but she is convinced that Keytruda is too dangerous to administer again. My immediate sense of her is that she is a strictly “between the lines” type of doctor, which I view as a problem.
We move into a waiting period. On February 1st, Michael develops a cold and cough. What was once an average illness now carries the weight of a terrifying episode. Normal, whatever that was, has disappeared. Dr. Zhang orders a liver scan for mid-month. When Michael’s cold happily resolves, we hit the road to Chicago to just feel like we are taking advantage of the fact that despite all the uncertainty, we are still together, alive. The rhythm of our comfortability and love kick in and we shove away the fears for a few days.
For what seems like an eon, I’ve been feeling as if I’m living in the Mel Brooks film High Anxiety. The tension of the past year has been unrelenting. In addition to the tremendous pressure of Michael’s condition and treatment, I’ve been trying to pay attention to my own health. A visit to my doctor brings the news that thyroid nodules which she’s been monitoring in me have changed in size and now require a biopsy. As my mom had thyroid cancer, this feels unnerving to me. In addition, my knees are incredibly painful with intermittent swelling in both the front and backs of them. I think everything is cancer. I terrify myself trying to imagine that Michael and I are 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 are being exacerbated by our current situation. I am trying hard to push all the negative thoughts away so we can 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 is likely all we’re going to have together. Stoically we board a United Airlines jet in Chicago and fly southwest in early March.
The exit seminar is a success. We couldn’t be prouder of our kid. It’s the end of April. Our wedding anniversary is May 1st. It’s our fifth “last anniversary” which we count from Michael’s diagnosis. Will it be our last? Michael writes me a note to go with my 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 gives me a ridiculous Roger Federer satin pillow case as a gift. We’ve had a few great months. Next up is 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 is the awareness that we’re not going to live to a ripe old age together. I can’t say we are entirely without hope but that hope has small dimensions instead of unlimited vistas. As Michael needs consistent monitoring we can’t go too far away for too long. Choosing our destinations means 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 is to make sure that we see what we only want to share with each other. Every one of those places is obviously impossible. But in Memphis, the Civil Rights Museum is essential for us who’ve shared a lifetime of activism and belief in civil rights. And then there’s Elvis, Sun Records and the famous Memphis Recording Studio, another must for music lovers like us. There’s 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 cry 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 is over and we are in scan week. I am working on managing anticipatory grief. A tall order for me. Michael is working his way through a list of life goals, some small and manageable, others daunting. Some days, he’s quiet and dark. He always had days like that. I try imagining the alienation he feels from his own body and bearing the constant weight of imminent death. We know other people who’ve died recently or who are in hospice. One minute at a time. Miraculously the mid-May scan is NED, negative for disease. Michael hasn’t had treatment since December. Maybe his immune system is still amped up from Keytruda. We’ll take it.
During this health reprieve, we decide that we may finally have 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 happen. It feels like there’s not enough time between them but Michael is still stable, no change in disease load. No one on his care team understands this – the facility tumor board says, “more power to him.” I have convinced Michael to sell his music collection. We sold some collectibles when he’d gone back to school but we still had over 7500 pieces of vinyl and CD’s. 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 is likely to miss in the future. I watched my mom attend my kids’ events without my dad. I can hear her wistful voice saying how much he would have loved watching them play basketball, dad’s favorite sport. I push those thoughts away.
In August, we get back to our place in Lakeside, Michigan which is brief but wonderful. Before the next scan, we squeeze in a long weekend with dear old friends in Oconomowoc, Wisconsin. So much lake time. We feel otherworldly, living our best lives under the onus of his mysterious Merkel cell which is in a deep snooze. But we’re managing to enjoy ourselves except for the occasional times when we look too far ahead. Staying in the present must be easier for people who are more Zen than me.
Another clean scan in August. We decide to go for another big trip in September. I am obsessed with seeing the National Parks of Utah. And I want to share their majesty with Michael. So I make the plans, a flight to Denver, a car rental and then a big push through Arches, Canyonlands, Zion and Bryce. I feel nervous that it may be too big a stretch for us but how do I know if there’ll be another chance? The trip is set. Meanwhile, I get furious when Michael sheepishly sits me down to give me what he says is both bad and good news. I brace myself for hearing he’s found a new lump. Instead he tells me that￼ he sold the music collection for more than he told me and has bought himself a used Harley. The good news is that he has money left over to give me. I try remembering that I shouldn’t want to kill someone who’s got cancer. Given the circumstances, I manage to put aside my anger, knowing that his need to feel this thrill again may be the last time￼ he has￼ for it. A Harley. Unreal.
We head west. The Utah trip is magnificent and grueling. Michael develops gout and a cough. I waver between awe at what we’re experiencing and anxiety about his health. Both of us are glad we did it.
Michael recovers from the respiratory infection slowly through October. We have a big event that month – our daughter is being inducted into her university’s athletic hall of fame. The whole￼ family attends that event. A few weeks later, the Chicago Cubs, Michael’s beloved sports team finally win the World Series. Ticking that long-hoped for event off his list is a huge deal for him.
The national election happens and our whole family is stunned and grieving about Trump being president. Our son is getting ready to leave for a postdoc in Guam. But first there is another Thanksgiving and another scan. We get through the holiday, amazed that it’s our fourth since Michael was given only a few months to live without treatment which might buy a year. What a road we’ve traveled. The November scan is negative. December brings departures and family going in different directions for the holidays. Michael and I zip off to Starved Rock on our own for two days. Always magical, I take this happy photo of Michael at breakfast.
I am a little worried because he’s gotten sick to his stomach twice after eating his favorite seafood dish in the past few weeks. Maybe he’s suddenly allergic? Who knows? We are navigating the political situation, bumps in our kids’ lives and our own anxieties about his disease. Michael is featured in an article in our local newspaper which follows the course of his cancer journey. Both of us feel awkward about it. On ￼December 31st, we have our New Year’s dinner at our favorite restaurant alone for the first time in years. Our family and friends are all dispersed. The service is unusually lousy and the food disappointing. We’re both somewhat disgruntled but we go 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.