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 When a trial with that drug went from pending to withdrawn, I wrote the principal investigator to find out if the trial was pulled because the drug was useless.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 at the cellular level, with 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 met with our local oncologist, Dr. Luyun, who decided he was going to scan Michael more frequently. In the meantime, I’ve found some articles that suggest that a big dose of radiation to each cancer hot spot can potentially have a cascading effect to hold 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 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 are between scans, Michael headed off for a camping/canoeing weekend with our son. I use 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’ve had since the dire prognosis of November, 2013, is a huge challenge for me. Michael’s job is to stay focused on trying to keep his body as healthy and strong as possible as he faces mortality every day. I am his partner, his caregiver and his advocate. I feel isolated. I am climbing the mountain of emotions every day by using my intellect to transcend the writhing, terrified part of me. There’s not 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 have to submit an application and agree to some rules before being admitted. After I join, I realize that the group administrators are all based in Seattle where the doctor I contacted about Michael is located. There are numerous heart wrenching stories posted but it’s not long before I notice that most of the exchange involves advising people who either themselves or their loved ones are recently diagnosed should try coming to Seattle. The conversation I’m looking for which would focus more on emotional support and suggestions for undiscovered treatment options isn’t there. Within a week, after I initiate that type of discussion, I am informed that I am on probation as a group member. I am stunned, appalled and furious. I write a long point by point letter explaining myself but I realize that I’m actually banned from the group already. 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. Her husband who was 10 years younger than Michael would only have 15 months from diagnosis to 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 are juggling trying to live our best lives while knowing that insidious MCC is parked in Michael’s body. We see Dr. Stanic for a consultation which turns into the preparation for a blast of radiation to the active cancer spots. At the next appointment with Dr. Luyun, he asks if the burning has begun. He also reveals 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 are disturbed by that revelation because we’ll 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’ve already been wondering if we’d swapped dermatology appointments in 2012 if the MCC could’ve been caught before it metastasized. 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 has￼￼ 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 helps inform future choices. For now, radiation is happening. Dr. Luyun says Michael is still too healthy to be degraded by more chemo. He says, “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 suggests that the cancer is indolent, slow-moving and aimless, causing little pain. A rather peculiar description for this aggressive killer, in my opinion.
We have 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 are being addressed in clinical trials, primarily with oral chemo. We will send that to Dr. Salgia for his analysis. We also have discovered that metastases to bone exclude￼ patients from clinical trials as they are not considered “measurable.” This news is very depressing. The MCC experts feel that a clinical trial is where Michael belongs as he is still healthy enough to deal with the often daunting side effects of the treatments. However, a conversation with Dr. Stanic reveals that he saw and measured soft tissue involvement along the blazing spot on the rib. He’s not a big fan of clinical trials that are risky and make patients guinea pigs who can get remarkably ill. We take that view with the proverbial grain of salt. We take his marked scans and say 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 recommends that we proceed with the radiation and if there’s a change in Michael’s status, to begin his recommended regimen.
Michael and I process 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 are doing our best at living a normal life, spending lots of time with each other along with our kids and grandkids. I watch Michael systematically working his way through his lists of things to do. I find it instructive. I continued looking for the next treatment steps which I know are inevitable. I believe that the clinical trial in Seattle is branching out into the midwest. If it does, we think it’s the best next option. Michael still is very strong and healthy which seems crazy but is true. The oral drugs or second line chemo would definitely be a beating. Remaining vigilant and watchful about what the MCC experts think is right seems like the best plan. There are more scans at the end of the month. We decide to leave town again, this time heading for Pere Marquette State Park. We stay in a lodge which is 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, the next￼ scan. Describing the anxiety which looms￼ between the actual imaging and the results is almost impossible. We try to stay in our moment 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 are both doing our best, most of the time. We’ve learned to schedule the￼ follow-up appointment for the￼ day after the scan. And there isn’t much new. Everything is stable with the three radiated spots still too irritated to know if they responded to treatment. None of the doctors want to introduce any treatment when Michael is so stable. The dissonance between the nature of his cancer and his apparent wellbeing are disconcerting at the very least. I ponder the holes in his immune system along with his strength and longevity genes. The mystery of life is very big.
The retired life is very much on my mind. I am wanting to give Michael his dreams as much as I can. 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 is worried about the finances but I insist that we go. And whoosh. We are suddenly driving east. We’ve decided that we’ll 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 maintain our interest in history. We drive through the beautiful Adirondacks and Catskills, through the Hudson River Valley, crossing the river on the Rip Van Winkle bridge. There is 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 find myself most interested in Eleanor and the principles she championed in the midst of challenging personal issues. As our trip is coming to a close, I can feel that both Michael and I are struggling to hold ourselves together. We are heading back home at just about a year from the dreadful November diagnosis of 2013. He’s already outlived his prognosis. We are gamely living our best lives but we are eroded. I’m inspired by Eleanor and I buy a magnet to bring home.
Our last stop is Niagara Falls. Michael has been there before but I haven’t. While I stand marveling at the power of the water, Michael tells 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 fence, as if to drop him. At that point in his life, it was the scariest thing that ever happened to him. The symbolism isn’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.