October 13, 2017: Follow Up

Matt was due for a follow up appointment at Columbia on Friday, October 13, 2017. We were hoping to learn the results of the bone marrow test and rule out, once and for all, the incredibly unlikely and terrifying possibility of a secondary cancer.

Getting Matt to Columbia proved to be a challenge. Or, in truth, I thought getting Matt to Columbia would be a challenge. I hadn’t seen him walk much during the week. At Kessler, the physical therapists assured me that he was getting stronger, but during my visits, he didn’t move from the bed or wheelchair. I was worried that I would not be able, on my own, to help Matt into and out of the car and into and out of the wheel chair, and navigate him through the city.

Matt’s parents and the administrative team at Kessler agreed and helped me secure an ambulance to transport him from Kessler to Columbia—about a thirty to forty minute drive.

Matt’s mom and I arrived before the ambulance, which was late. We waited in the front of the building, worrying that the ambulance had gone to the wrong location or had gotten stuck in traffic.

Matt had not enjoyed the ride. He’d sat in the wheelchair, which had been locked into the back of the ambulance by clamps. He told us that the ride had been long and bumpy, that he’d been miserable and uncomfortable. He was, in short, furious that I’d ordered an ambulance to drive him, rather than driving him myself.

In truth, Matt hadn’t needed the ambulance, though I couldn’t have known that when I made the reservation. Sometime between the time I’d left him the night before and the appointment that afternoon, Matt’s recovery had made a huge leap. He couldn’t have marched long distances, but he was steady enough that he could have walked the few steps from the car to the wheel chair on his own. He was mentally present enough to understand where we were and what we were doing, to understand what would be safe behavior and what wasn’t.

I remember the guilt. The last thing I wanted was to make Matt feel incapable of doing anything, especially to make things easier for me. I’d misjudged how quickly therapy and time would heal him. How quickly he’d heal himself.

While we waited for the appointment, Matt made his mother and me sign a makeshift contract saying we would never again force him to ride in an ambulance like that. We signed the contract. A very tiny iota of relief had joined the guilt. Matt had used a logical thought pattern, created a logical solution to solve a problem that upset him. But more than that, there was something quintessential Matt in creating the contract—stubborn and a little funny and so confident. It was looking more and more likely that yesterday’s psychic was correct.

The doctor arrived and performed the standard physical and cognitive exams. Matt stood from the wheelchair and walked across the room. His strength had significantly returned. He was relatively steady. He spoke with the doctor and he made sense. I have no memory of how he performed on the cognitive tests, but I think that means there was nothing wildly alarming. The definition of wildly alarming had changed. No longer was forgetting a few words during the memory portion of the cognitive exam worth worrying about. The cruelty of brain cancer: how quickly the threshold changes.

The visit overall was inconclusive and frustrating. Matt’s temperature was low—again. When I asked the nurse whether I should be concerned, she said no and he was probably just cold. I accepted the answer, but a thread of doubt remained–again. We discussed our options for treatment going forward. One year ago today, every option was on the table—surgery, more chemotherapy, even possibly radiation. But Matt had to get stronger before anything could truly be considered. We’d have to wait and hope the tumor didn’t get too large in the interim.

Finally, we discussed the bone marrow biopsy. Negative for lymphoma. That should have been a reason to celebrate, except that in Matt’s case, the negative result told us nothing. As it turns out, lymphoma seems to disappear for biopsy purposes under the influence of steroids. The negative result was therefore deemed inconclusive and the biopsy would need to be repeated in two to three weeks when Matt had tapered off the Dexamethasone.

We left with no more information than we’d come. No explanation for the sclerotic lesions on his spine and ribs, for the hydrocephalus, or for the unexpected response to Gamma Knife radiation. But the doctor did say one thing to end the visit—and this was something we heard at the end of every appointment for the next four months as Matt continued to get worse and continued to defy every expectation.

You’re a mystery, Mr. Roth. Whatever is going on with you, is a mystery.

5 thoughts on “October 13, 2017: Follow Up

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