We are on the road, headed for Ann Arbor, Michigan. The drive will be about five and a half hours. Michael and I have always gotten along really well on road trips. From the beginning of our relationship, we had this easy rhythm that was a part of the organic comfort that was established the first day we met. This Merkel cell(MCC) cancer diagnosis has shaken us, but the ties between us are strong. The day is sunny and mild, the day before Michael’s 63rd birthday. We would stay in a hotel in the city overnight before having our meeting the following morning. We listen to music, wondering what will happen at our appointment with the specialist who will analyze Michael’s case case files and surgical reports to confirm whether the treatment plan recommended at our local clinic is the right choice. The past few weeks are a blur, a curious combination of breakneck learning, a cancellation of a trip we’d planned following the end of Michael’s second semester of the school year, and a high finance dance as we are confronted with the economic realities of a cancer diagnosis. We have gotten past the tip of the MCC mountain and are now working our way through the practical realities that go along with disease management. We had trip insurance for our vacation so that’s lucky. Michael has enough sick time to miss the last few weeks of school without losing a paycheck. Fortunately he chose to get his nine months’ school salary paid over twelve months. Our health insurance has a hefty out of pocket maximum but at least there’s a ceiling. A group of our oldest and closest friends have pitched in with some cash to send us on a week long getaway immediately following our appointment in Michigan. We’ll head to a cabin on Kentucky Lake for a much-needed reprieve before starting whatever treatment lays ahead for Michael.
We are going in cold to our appointment in Ann Arbor. There were two doctors who were considered the best choices for our second opinion. We picked the one who was available first. Looking back, I remain awed at what turned out to be our dumb luck. Life can be so remarkably random. The doctor we chose was Christopher Bichakjian, a young man in his forties. He had,what to our inexperienced eyes, was an impressive resume.
This is his current title. Interim Chair, Department of Dermatology Professor, Department of Dermatology Chief, Division of Cutaneous Surgery and Oncology Director, Multidisciplinary Melanoma Program Director, Micrographic Surgery and Dermatologic Oncology Fellowship Back in June, 2012, he didn’t have as many titles.
When we arrived at the imposing University of Medical Center, we were led to an office where a resident met with us and went through what felt like the physical history of Michael’s entire life, along with that of his family. After an hour or so of this preliminary meeting, she left. Shortly thereafter, we met Chris Bichakjian for the first time. Unbeknownst to us then, this bright, interested, engaging young man would become the anchor we were tethered to for the next five years. This was mostly true for me as the point person in Michael’s disease. Michael’s job would be living through what had been and what was coming to his body. Mine was to keep digging into MCC and whatever other treatments might be available for what we had now learned was an “orphan disease,” a disease so rare that few doctors were studying it or its possible treatments. What a terrifying prospect. Dr. Bichakjian was in a loose confederation of doctors and researchers who were trying to consolidate their efforts to tackle this bewildering neuroendocrine cancer, which “acted” most like small cell lung cancer, which represents only about 20% of all lung cancers. A rare bird, indeed and hard to treat. Bichakjian had written the most recent NCCN protocols for MCC. A stage IIIA patient would be most responsive to radiation therapy, especially since the cancer seemed confined to the head and neck area. He told us that if Michael had only one metastatic lymph node instead of two, that no follow up treatment would have been recommended at all. Rather, the extensive Captain Hook-like surgery would have sufficed, followed by three month exams for at least the first year. But with two nodes, more intensive treatment was required. The recommendation was for thirty radiation treatments to the draining basin, his neck and face, six weeks for five days in a row, weekends off. He answered all of our questions and explained that chemotherapy had only temporary effects on Merkel cell which usually recurred mere months after treatment. But burning it had shown significant degradation of the disease. As we ended our appointment, it was clear that a bond between us had been established and we felt hopeful. He told us that he would bring Michael’s case before his tumor board at UM to get input from the various cancer specialists at the facility. Hopefully there would be a consensus. Our departure was warm, and Michael and I stepped giddily into a beautiful, early summer afternoon to celebrate his birthday. That birthday now seemed not like the last, but rather the first of many more.
We headed to a well known Ann Arbor food landmark, Zingerman’s Delicatessen, where you could walk in the front door, get tastes of your potential meals and dine outside in the sunshine. We managed to spend a reckless $75.00 on a few sandwiches and salads which to our elevated senses tasted like nectar of the mythic gods. Then we scrambled into the car to our getaway on the lake.
Trying to describe what we felt then is challenging. What did we really know about six weeks of radiation? How hard could it really be? We were too excited about the possibility of extended life to focus on what was ahead for us that would be hard. We were living in an exquisitely detailed awareness of now, of being together, of relishing how alive we were in the moment. This state￼ is almost dreamlike, each shared touch, each look almost as painful as they￼ were powerfully and intensely beautiful. We would do all the things we normally did on vacation but with greater awareness of how precious all the small moments were. We bought groceries and settled into our little house. The next morning, I was startled by my cell phone ringing at a ridiculously early hour but I recognized the phone number as one from Ann Arbor. It was Dr. Bichakjian calling to say that he’d already met with the tumor board and that everyone had agreed about the radiation treatment plan. I was so grateful for his personal attention. I turned to Michael and told him the news. Then I snapped the photo below.We spent our week quietly, reading, exercising, exploring the natural area around us and of course, sharing our love and intimacy.
We burrowed into our forty years strong fortress of support and determination to forge ahead together, scared shitless or not. We knew that when we returned home, our normal life would be flipped into the new reality of cancer people. But for that blissful week, we relished the space between the before and the future, when we were still just us.