In late August, 2014, we were headed to the University of Chicago to meet with Dr. Salgia, a thoracic cancer specialist. I couldn’t figure out how we wound up with him as there was nothing in his profile to indicate that he had experience with Merkel Cell carcinoma (MCC). I’d reached out to the University of Chicago dermatology department, specifically to those doctors who were heading up clinical trials for melanoma. As MCC was a skin cancer, I thought that there might be a possibility of a different treatment for Michael in their arena. I’d ramped up my research and learned about the new immunological drugs that were in various stages of development. After Michael’s cancer had survived both radiation and chemo, it seemed like we needed something different.
That “different” might be a targeted therapy that would assist his own immune system in attacking the disease. We’d gotten our local oncologist to send blocks of Michael’s tumor tissue to a genetic analysis facility in Boston, Foundation 1. We hoped to find some clues that would make him eligible for one of these new drugs. Daily, I was watching the Clinical Trials website which listed which trials that were pending or recruiting. I learned that one drug called Yervoy or Ipilimumab, had shown some positive results with certain melanoma patients. When a trial with that drug went from pending to withdrawn, I wrote the principal investigator to find out if the trial was pulled because the drug was useless. I was relieved to find out it was a financing issue instead. I was grasping at anything that was an option, other than resigning ourselves to another round of chemo which was unlikely to do anything but buy a little time. In any case, I couldn’t figure out how my inquiries had gotten us to Salgia, but up we went anyway, on a bright, sunny day.
Michael was asymptomatic despite having three glowing cancer spots on his skeleton. A more refined scan report showed activity on the spine, a rib and a hip bone. He was pain-free. We were anxious to hear what this experienced doctor might tell us. When we arrived, Michael went through a physical exam and a lengthy interview with a young resident. When Dr. Salgia came in, I asked him why we were seeing him instead of someone in dermatology. He informed us that he knew everything about Michael’s case. He’d come to the University of Chicago from Harvard. A former colleague of his from Harvard, now working at the Seattle Cancer Care Alliance, was one of the researchers I’d￼ been writing about Michael. He’d forwarded all my emails to Salgia who wanted to have a look at this interesting case. The truth was, he didn’t have much to offer. The Seattle doctor was running a trial for MCC patients with a new immunological drug called a PD L-1 inhibitor. Essentially, that drug could interfere with cancer at the cellular level, blockading mutations that inhibited immune cells from doing their job. A much more individualized treatment in the category of what I called big science. But Seattle was far away and outside our economic wheelhouse. That trial would eventually become available closer to home. But for the present, Salgia asked us to forward him the genetic analysis of Michael’s tumor tissue when we got it and sent us on our way. In the meantime, I continued to share everything with Dr. Chris Bichakjian, the doctor at the University of Michigan who’d given us the second opinion after Michael’s initial diagnosis. This very busy man who we’d seen only once, had somehow turned into an attentive and trustworthy resource. He would remain on our team through everything.
We next met with our local oncologist, Dr. Luyun, who decided he was going to scan Michael more frequently. In the meantime, I’d found some articles which suggested that a big dose of radiation to each cancer hot spot could potentially have a cascading effect in holding disease progression at bay for awhile. He referred us to radiation oncology although our original team member in that specialty was gone, preparing for his own kidney transplant. We would be with his replacement, Dr. Stanic, for the duration of Michael’s treatment. Stanic seemed very smart and confident. While we were in a situation of no immediate intervention, we decided to skip town again, destination Lakeside, Michigan. We’d been traveling there every summer for years, staying at the historic Lakeside Inn and experiencing welcome relaxation there. We felt so lucky to get another chance to feel that again.
When we returned home, as we were between scans, Michael headed off for a camping/canoeing weekend with our son. I used this interlude to try finding some internal balance. Being engaged, full tilt, in the daily business of trying to be in the present, trying to appreciate the unexpected time we’d had since the dire prognosis of November, 2013, was a huge challenge for me. Michael’s job was to stay focused on trying to keep his body as healthy and strong as possible as he faced his mortality every day. Mine was to be his partner, his caregiver and his advocate. I felt isolated. I was climbing the mountain of my emotions every day by using my intellect to transcend the writhing, terrified part of me. There wasn’t much available locally in the way of support for dealing with an orphan cancer. After poking around on the Internet, I finally find a MCC support group. You had to submit an application to the administrators and agree to some rules before being admitted. After I joined, I realized that the group administrators were all based in Seattle where the doctor I contacted about Michael was located. There were numerous heart-wrenching stories posted but it wasn’t long before I noticed that most of the exchanges involved advising people who either themselves, or their loved ones, who were recently diagnosed with MCC, were all being encouraged to go to Seattle. The conversation I was looking for, which would focus more on emotional support and suggestions for undiscovered treatment options wasn’t there. Within a week, after I initiated the type of discussion I needed, I was informed that I was on probation as a group member. I was stunned, appalled and furious. I wrote a long point by point letter explaining myself but I realized that I was already actually banned from the group. I was a member for eight days. Getting kicked out of a cancer support group was stunning. I did come away with one friend who missed me when I disappeared and requested my email. Her husband,who was 10 years younger than Michael, would only have 15 months from his diagnosis to his death. But my online friendship with his wife Amy endured. One small comfort.
September 1, 2014
I just watched three American goldfinches drinking from my birdbath. Yesterday a hummingbird was drinking nectar from one of my potted lantana plants. Butterflies and bees are gorging themselves on my Mexican sunflowers, blue mist shrubs and anemones. The garden is alive with amazing critters. In the midst of my enormous anxieties about everything, I am grateful to be filled with wonder every day at the haven I created here.
Moving into fall, we were juggling trying to live our best lives while knowing that insidious MCC was parked in Michael’s body. We saw Dr. Stanic for a consultation which turned into the preparation for a blast of radiation to the active cancer spots. At the next appointment with Dr. Luyun, he asked if the burning has begun. He also revealed that when Michael was initially diagnosed, he’d wanted to do adjunct chemo but was outvoted by the surgeon and radiation oncologist. Michael and I were disturbed by that revelation because we’d never get to know if the cancer burden in his body back then was small enough that it might have been wiped out. Retrospect isn’t a good friend when you’re dealing with cancer. We’d already been wondering if we’d swapped our dermatology appointments in 2012, when mine was a month earlier than his, if the MCC could’ve been caught before it metastasized. That’s how fast MCC can grow. Then there was the long interval between scans – if caught sooner would things have gotten so dire? And now this window into the disagreements within the team had￼￼ been revealed. We realize that surgeons want to cut, radiation oncologists want to burn and medical oncologists want to prescribe systemic treatments. Knowing the vulnerabilities of the treating doctors would help inform our future choices. For now, radiation was happening. Dr. Luyun said Michael was still too healthy to be degraded by more chemo. He said , “you don’t want to be an interesting patient, but you are. You shouldn’t be here. The tumor board says, more power to you.” He suggested that the cancer was indolent, slow-moving and aimless, causing little pain. A rather peculiar description for this aggressive killer, in my opinion.
We learned a few more critical facts. The Foundation 1 genetic analysis came back and revealed that Michael’s tumor tissue had 5 mutations, 2 of which were being addressed in clinical trials, primarily with oral chemo. We decided send those revelations to Dr. Salgia for his analysis. We also had discovered that metastases to bone exclude￼ patients from clinical trials as they are not considered “measurable.” This news was very depressing. The MCC experts felt that a clinical trial was where Michael belonged, as he was still healthy enough to deal with the often daunting side effects of the treatments. However, a conversation with Dr. Stanic revealed that he saw and measured soft tissue involvement along the blazing spot on Michael’s rib. He wasn’t not a big fan of clinical trials that were risky and made patients guinea pigs who could get remarkably ill. We took that view with the proverbial grain of salt. We took his marked scans and said thanks, knowing that we’ll be the ones making the choice for what comes￼ next. Shortly after this consultation we heard from Dr. Salgia who has a suggestion for a targeted therapy for one of the genetic mutations, coupled with another drug which is supposed to help sustain bone health. He recommended that we proceed with the radiation and if there’s
was a change in Michael’s status, to begin this recommended regimen.
Michael and I processed all this information. At the end of September, we head to the Apple Pork Festival in Clinton, Illinois. We’d come upon this event decades earlier on a weekend drive through the back roads of central Illinois. We went for years but after a trying time there with our four year old daughter, we’d forgotten about it. Going back felt wonderful. Being in the crowd on a hot day, listening to music, looking at the wares of local artists while downing funnel cakes and lemon shake-ups pushed the cancer away.
Michael had the radiation treatments in October. They were primarily uneventful except for some discomfort he felt lying on the metal table. We were still doing our best at living a normal life, spending lots of time with each other along with our kids and grandkids. I watched Michael systematically working his way through his lists of things to do. I found it instructive. I continued looking for the next treatment steps which I knew were inevitable. The science was moving. I believed that the clinical trial in Seattle was branching out into the midwest hospitals. If it did, we thought it was the best next option. Michael was still very strong and healthy, which seems crazy but was true. The oral drugs or second line chemo would definitely be a physical beating for him. Remaining vigilant and watchful about what the MCC experts think is right seemed like the best plan. There were more scans at the end of the month. We decided to leave town again, this time heading for Pere Marquette State Park. We stayed in a lodge which was very similar to our winter refuge, Starved Rock.
October 20, 2014
The trip to Pere Marquette was so wonderful. The weather turned pleasant, mild and sunny, and the autumn colors were spectacular. The lodge food was good and we had the pool and hot tub to ourselves most of the time. We hiked in the woods although my version of hiking is pretty pathetic given the state of my knees. It was very quiet and peaceful; the views of the river from the bluffs were grand as were all the aquatic birds including white pelicans.
As usual, being away lets me momentarily set aside MCC and being with Michael, who looks and feels so good, is normal and comforting. I have to watch it though, because I can’t be lulled into complacency. I know I can’t take another hit like last November’s diagnosis. The hits will come but I’ll be more prepared. No more blindsiding.
We went to Grafton which is a cute little town and drank local wine on a terrace overlooking the water. We went to Alton where the Lewis and Clark expedition kicked off. A nice mixture of nature and history. I didn’t want it to end. On the way home we stopped at a decent barbecue place for dinner and￼ headed straight to the movies before going back to the house. Squeezing out every second of normal that we can get. But reality is still right here.
October 27th was the next￼ scan. Describing the anxiety which looms￼ between the actual imaging and the results is almost impossible. We tried to stay in our moments, but knowing that your daily life￼ can change in an instant is hard to carry. Teetering on the brink is torturous for me – Michael’s stoicism is a well-practiced skill for a man of his age. But he gets dark and withdrawn. We were both doing our best, most of the time. We’d learned to schedule the￼ follow-up appointment for the￼ day after the scan. And there wasn’t much new. Everything was stable with the three radiated spots still too irritated to know if they’d responded to treatment. None of the doctors wanted to introduce any new treatment when Michael was so stable. The dissonance between the nature of his cancer and his apparent well-being were disconcerting at the very least. I pondered the holes in his immune system along with his strength and longevity genes. The mystery of life felt very big.
The retired life was very much on my mind. I was wanting to give Michael his bucket-list dreams as much as I could. A life-long, diehard Cubs fan, and a former baseball and softball player, I remembered how much he’d always wanted to go to Cooperstown, New York to visit the Baseball Hall of Fame. He was worried about our finances but I insist that we go. And whoosh. We were suddenly driving east. We decided that we’d go to the Hall of Fame and￼ also to Hyde Park, home of Franklin and Eleanor Roosevelt. Despite all the cancer fear and distraction, we both maintained our interest in history. We drove through the beautiful Adirondacks and Catskills, through the Hudson River Valley, crossing the river on the Rip Van Winkle bridge. There was an absurdly beautiful Vanderbilt residence along the way.
Michael really enjoyed￼ the Hall of Fame. Both of us were fascinated by Hyde Park and the giant lives that both Roosevelts lived. Places like that are thought-provoking and help provide at least a momentary perspective on our places in the world.
At the Hyde Park gift shop, I found myself most interested in Eleanor and the principles she championed in the midst of challenging personal issues. As our trip was coming to a close, I could feel that both Michael and I were struggling to hold ourselves together. We were heading back home just about a year from that dreadful November diagnosis of 2013. He’d already outlived his prognosis. We were gamely living as best we could, but we were definitely eroded. I was inspired by Eleanor and I bought a magnet that resonated with me to bring home and to remember.
Our last stop was Niagara Falls. Michael had been there before but I hadn’t. While I stood marveling at the power of the water, Michael told me￼ that when he was a young boy, living in Rochester, New York, his family visited the Falls. At one point, his father lifted him up and dangled him over the fence, as if to drop him. At that point in his life, it was the scariest thing that ever happened to him. The symbolism wasn’t lost on either of us. We’d managed five trips in this perilous year. We were headed toward another Thanksgiving that we didn’t think we’d get. Scary times were still ahead.