We sit anxiously in the waiting room, steadying ourselves as we prepare for sticking our toes into cancer waters. Our surgeon will be the lead doctor as the journey begins. He is Dr. John Brockenbrough, an young attractive man who exudes confidence. A man with a plan. Michael will be his first Merkel cell cancer patient. He describes the NCCN guidelines for staging Michael’s Merkel Cell cancer(MCC.) We don’t know what NCCN means – later I look it up online and find it is the National Comprehensive Cancer Network.
The first step is a sentinel node biopsy. Michael’s small tumor is located on his upper left cheek. Dr. B. will make a wide eye-shaped incision in the cheek and check out lymph nodes in the area. If any are malignant, a more dramatic flap surgery will be required.
Dr. B. is the head of a medical team that consists of him, an oncologist and a radiation oncologist. Their roles will be determined by the extent of the disease.
Michael and I are struggling for balance. We each have a tendency to be pessimistic rather than optimistic. Anything better than a death sentence will be a positive. We are balancing some complex life situations. My mother, who is 89 and showing signs of dementia, is a querulous roommate. She has had two different cancers, twenty years apart and doesn’t comprehend what’s the fuss with Michael’s cancer. To her, one cancer is the same as another. She’s jealous that she isn’t the center of attention. I am the primary caregiver for our grandson who’s been in my charge since he was seven weeks old. He is now 20 months. My daughter and her husband have challenging jobs and the last thing I want is to abruptly send them on a hunt for baby day care. Our son is in the middle of a PhD in tropical ecology which requires him to be in Panama for six months at a time. Fortunately he’s chosen to pursue this degree at the University of Illinois which means he’ll be home at least part of the time to share in this unexpected experience. Our kids are too young to deal with this blow.
I remember 1989, when both my parents received their bad cancer news, within 5 weeks of each other. Michael was struggling with a herniated disk and I was managing a job, two young kids and everything else. I was 37 and felt like Sisyphus rolling his endless boulder up the hill. But there are positives. The good news is that though Michael has stopped teaching for the remainder of the school year, he has plenty of sick time and our health insurance is reasonable. Our dermatologist is optimistic because she thinks the cancer was caught early. Michael and I are clinging to each other but our different styles and experiences are already beginning to emerge. Michael’s parents are both in their 90’s. He has one living sibling who is older than he is but he isn’t close with her.
His family is small, filled with conflict and lacking intimacy. He’s never experienced a death that hurt him deeply. He’s the babe in the woods. And he’s not aggressive although he appears to be due to a volcanic temper. Next to me, he is passive. Also quiet, and proud. Soon he sinks into his silent place which is familiar to me. I hate it. When I start spilling a myriad of ideas, his hand comes up to stop me. He asks if I would mind removing my feet from his back as I race over him. I emerged from a maelstrom of crazy. I’m a scrapper. I think pride is a waste of time. To get what I want or need I’m willing to try anything. I came from a noisy family with multiple health issues, both physical and mental. I experienced deaths during my childhood. I am one of the most aggressive people I know and I learned early in life that I needed to rise above my emotions and use my brain to keep from sinking into the lunacy around me. I have internal armor which I built over time. I don it fast. Michael’s cancer is a wall in front of me. I start to probe it, looking for some weakness that we can capitalize on as fast as possible. After learning about the NCCN, I begin to read everything I can find about the Merkel Cell protocols. Even though we don’t yet know what’s happening, I want to be ahead of the curve.
The doctor who wrote them is at the University of Michigan. That’s not too far away from where we live in Illinois. We are going to get a second opinion from someone with more knowledge of this disease. No one at our local cancer center has ever treated Merkel Cell. Three people with this cancer had presented themselves at the clinic but they were elderly and chose not to go through the prescribed difficult treatments at an advanced age. Michael is sixty two years old. The sentinel node biopsy takes place a week after seeing Dr. B. It was delayed because Michael was taking baby aspirin as many people in his age group did for heart protection. The doctor wanted to avoid potential bleeding issues. The procedure is done in a bright, modern outpatient surgery facility. The extra facial tissue is removed along with four lymph nodes. After a few days, the biopsy results come back. One of the lymph nodes is positive for MCC. This lymph node is located on the parotid salivary gland, located under the cheek below the site of Michael’s original lesion. That result which indicates metastasis means that the more complex flap surgery is required. A scant week later, Michael is admitted to the hospital for an exploratory surgery intended to unearth the extent of the metastasis. Dr. B. informs us that the surgery can take between four to five hours, depending on the number of lymph nodes to be removed, a number which can vary widely from individual to individual. Aside from the usual risks of any surgical procedure, there is an issue of skin lying folded on itself while the doctor attempts to locate and retrieve all the lymph nodes. Skin doesn’t like lying on itself. It can die, become necrotic. We have no choices here. We go to the hospital. Michael is prepped and taken to surgery.
My kids and I settle in a corner of the waiting room, anxiously watching the clock. Hours slowly leak away. After over four go by, Dr. B appears and says he’s removed 62 more nodes. He says only one of them looks funky. I find that’s a remarkable statement, but he exudes confidence. That means only 2 nodes out of 66 total look diseased. One was in and one was on the parotid salivary gland which is under the cheek, just below where Michael’s tiny cancer was located. That night, I stayed in the hospital with Michael. The room was small with only a hardbacked wooden desk chair for me to rest on. But I wouldn’t leave. Michael’s blood pressure and pulse were elevated even though he was still asleep. I rubbed his head and neck and held his hand all night. Every two hours the nurse came in to check his vitals. As they kept dropping, i felt less useful and less powerless. There was something I could do. I could comfort him. The next day he was eager to go home, even though I wished he’d give himself another day. I could have used one too. But home he came.
A few days later, the pathology report confirmed Dr. B’s assessment. Only two of the 66 nodes were metastatic. Michael’s Merkel Cell (MCC) was classified as Stage IIIA. The NCCN protocols for that stage called for 30 rounds of radiation to the draining basin closest to the lymph nodes, as MCC is carried via lymph and blood. His draining basin was his cheek and neck. Adjunct chemotherapy was an option but wasn’t considered effective in the long term. I’d been doing a lot of research by then and we decided to go for a second opinion. I was so relieved I’d found the MCC specialist who’d written the NCCN guidelines for Michael’s treatment. We made an appointment in Ann Arbor for June 5th, Michael’s 63rd birthday. In the following days, Michael’s incision was healing nicely. I thought he looked like a handsome pirate who’d taken a cutlass to the neck. We made plans for a romantic getaway in cabin on a lake that would follow our appointment in Michigan and precede his treatment. We were in a zone of cautious optimism as Dr. B. was convinced Michael could be cured. We were a tight unit. Next stop – Ann Arbor.