On the morning of January 31st, 2017, I was in my bathroom, thinking of this Eleanor Roosevelt quote, “You must do the things you think you cannot do.” I’d just hung up the phone after telling Michael’s oncologist’s nurse that I was bringing him into the ER for a brain MRI, which she told me would likely be impossible. That was the least of my problems. Defying the medical people and their incorrect scans was nothing to me. Trying to persuade my confused, yet stubborn husband to go with me to the ER was the real challenge. That, along with facing what I knew was true – I was going to lose my beloved partner. I’d been knowing it for awhile. He was no longer himself. I was thinking back to the night a few weeks ago when I was getting into our bed after a stretch of days when we’d been arguing about his food consumption. I felt terrible that we were being distant from each other. As I slid under the covers, I asked him if he wanted to make love. He politely responded that he really didn’t but that he would be happy to address any need I had. Right then, I knew he was going. Throughout our whole lives and even in the most challenging times of his treatments, we’d always shared a powerful physical connection. Lying there, listening to his breathing, I felt like death was already lurking nearby. Our intimate connection had often helped us bridge the difficult times in our life together. As I dug deep into myself in that bathroom, I realized I’d have to count on the iron trust we had for each other, hoping he’d remember to believe that what I was going to ask of him, would only reflect what I thought was best and healthiest for him. As for me, I was counting on some vestige of mental strength to help me stay firm with him while internally I was riddled with terror and despair. I went into the bedroom to find him awake, sitting on the edge of the bed. I sat next to him, put my arms around him and asked him to make eye contact with me. I explained that he wasn’t acting normal and that we needed an MRI of his brain to explain his mysterious behavior. I could see how averse he was to going, but there was also the familiarity of him recognizing my truthsaying. So he reluctantly agreed. He got up, dressed and off we went. We parked in the ER lot and he walked into the hospital under his own power. The oncologist had called ahead so we didn’t have to wait long for a room. Soon he was in a bed, his brow furrowed, exhausted while we waited for the tests to be ordered.
I understood my job – I was the advocate and caregiver. I geared up to make requests that were more like demands. I recognized the ER doctor with whom I’d interacted before, both on Michael’s behalf and my mother’s. He got the requisite labs done quickly and made sure I got to read them – I saw nothing particularly unusual was evident in the numbers I’d been studying these last years. After hours of waiting, Michael was taken to the MRI room. I sat waiting for his return, my heart banging away in my chest. When he finally returned, we were moved into an overflow area where patients were separated by curtains. A young man in the next space was screaming in pain from a kidney stone. Michael couldn’t rest and I thought I’d go mad listening to the relentless howling. The hours passed slowly, until finally, the doctor came in with the radiologist’s report in his hand. He gave it to me but when I started reading he told me to just turn to the summary on the second page. The diagnosis was carcinomatous meningitis, a manifestation of central nervous system lymphoma. In other words, another cancer. I explained what I’d read to Michael who started crying and said, “baby, we’re not going to get our time.” He was the most normal-sounding that he’d been in weeks. Our oncologist, Dr. Zhao, came rushing to the hospital from the cancer clinic. She looked stunned. She ordered a resident to set up a lumbar puncture and prepared admission orders. I called my daughter who soon joined us. The cancer floor was on 6 which confused me since that was formerly the intensive care floor. We were taken upstairs in the personnel elevator and brought to a spacious room with a small anteroom attached. I realized that was a space for donning sterile gear. I also realized we were in the same room where three years earlier, we’d stood with our neighbors’ and friends’ sons, watching the dad from that family die on a ventilator while his wife and daughter were frantically trying to get home from a trip to England. Our friend, who’d gone through a six year bout with a lethal leukemia, and two bone marrow transplants, had unexpectedly failed and was left to our care in his wife’s absence. As I watched him die in that very room, I remember feeling like I was in a dress rehearsal for my future. And now here we were, in the midst of what felt was like a very bad movie.
Our kids came to join us that evening bringing us clothes and personal items. I’d already decided I wasn’t leaving the hospital. Michael wasn’t mentally competent and would need my help in negotiating his care. The lumbar puncture was required to stage the cancer. But no one came that night to do it. I’d rapidly recovered my senses and didn’t really believe that this was a new cancer. For five years, every relapse was always Merkel cell. I thought it likely that this was another recurrence. Some quick research showed that the average life span for someone diagnosed with this disease presentation was approximately 4 weeks. Overwhelming. But there was still digging to be done.
By the next morning, I was furious. I was learning about the hospitalist system which allowed for an ever-changing group of residents to come in and out of the rooms of very sick patients, getting started with conversations, and then responding to their pagers, quickly departing to attend to someone else. The hospital’s policy was to do lumbar punctures at the patient’s bedside. Michael had back surgery almost thirty years prior to this time and I knew that scar tissue would be a huge problem for a procedure without imaging. A Dr. Shankar came in to attempt the fluid draw. I was fuming as he tried three times, poking this long needle into Michael’s back. I stood there with pen and paper, saying, “I’m taking names and taking notes.” He finally left and Michael was taken to interventional radiology for a guided procedure which should have been done in the first place. Late the same night, he was brought downstairs for an MRI of his spine which took over three hours. He came back exhausted, saying he felt disconnected, confused and very tired. Death was in front of our faces and despite being mixed up, he knew it. We were grieving.
That evening, our oncologist, flanked by our radiation oncologist and a team of neurologists and hospitalists, came into our room to deliver their prognosis and opinions. They confirmed that Michael’s life expectancy was perhaps a month and that his diagnosis was central nervous system lymphoma (CNSL.) Dr. Zhao felt he should be transferred to Barnes Hospital in St. Louis where they had the capacity to perform a brain biopsy that couldn’t be done locally. She was mystified at this “new cancer.” Michael was lying in his bed trying to follow the conversation. The doctors stared down at him while I stared up at them. Taking a deep breath, I told them that we weren’t going anywhere for a brain biopsy because Michael did not have a new cancer-this was again Merkel cell carcinoma. What none of them realized was that two years earlier, in 2015, Michael had a large tumor that had eaten through a thoracic disk and compressed his spinal cord, causing agonizing pain. Dr. Stanic, the radiation oncologist had recommended neurosurgery back then, but there was no time to seek out a doctor with the expertise to perform that procedure. Instead, Stanic attacked the tumor with a 15 round targeted radiation plan. Michael’s pain abated but his cancer was spreading everywhere within a few months. He was close to death when his former oncologist treated him with Keytruda, the new immunological drug off-trial. That medication saved his life and eradicated detectable cancer, all the way up to this dreadful new recurrence. Dr. Zhao said the brain and spinal cord were a closed system so how could the Merkel cell have invaded? I felt that some cells must have shed from the tumor during the cord compression and laid dormant until recently. He hadn’t had any treatment in a year. Suddenly Michael perked up and stated that he wanted treatment. What he didn’t know was that the chemotherapy for CNSL wouldn’t have any effect on Merkel cell.
Dr. Zhao said she’d think things over and stop by for morning rounds. Dr. Stanic offered to develop a plan for whole brain radiation which I thought sounded barbaric. He told us to talk things over and ket him know our decision in a few days. Then all the doctors left and Michael went to sleep. I copied the radiologist report and filed a request for his brain MRI to be forwarded to our expert at the University of Michigan to see, so we could get a second opinion. I’d already exchanged a few emails with him and he agreed that he’d suspect Merkel cell recurrence rather than something new. Finally I settled in quietly in my chair next to Michael’s bed. A few hours later, the youngest neurologist who’d consulted with us re-entered the room. I asked what he was doing back with us. He said that my fervent belief about the nature of this cancer piqued his interest. His curiosity sent him to the research journals. He said there were only six incidences of Merkel presenting as carcinomatous meningitis in the literature, most likely because most patients had died before it ever got that far. Michael was in his fifth year since diagnosis. A rare case. He believed me and said he would tell Dr. Zhao. I felt a strange relief as the outcomes were all still terrible, but yet no one would be kicking us out to have Michael’s head drilled open for a biopsy. The hospital phase for treatment had begun. Would Michael ever get home again?