Once the initial novelty wears off, chemoradiotherapy becomes routine. You commute to the cancer center. You check in. You wait in the lobby to be called for your treatment session. You're led back to the treatment unit to get irradiated. If I timed it right, the entire excursion could take me less than two hours including commute time. These trips would eventually start to feel like a job. I'd see the same people day after day, at the same time, for about the same amount of time. If having terminal brain cancer can deliver any experience that seems normal, this was it.
On May 16, this comfortable routine I'd settled into would be disrupted by something whose cause I still don't know.
By this point I'd had about a dozen radiotherapy treatments. But even before they began I'd noticed progressively worse physical problems. In particular, my left leg felt increasingly imprecise. Chemoradiotherapy seemed to have made things worse. The imprecision meant that it was harder to stay balanced while walking. I knew this sensation well, because it's what drove me into the ER in the first place. To avoid falling while walking, the consequences of which had left a lasting impression, I'd started using a walker again.
This physical regression was demoralizing to say the least. I previously wrote about the euphoria of regaining lost abilities. There's also a dark flip side, the emotional crash that comes from losing regained abilities. No matter what I did to fight this demon, no matter how hard I worked, no matter how many lucky breaks I got or who helped me, I would eventually give back everything I had won, with interest.
As if this weren't enough, treatment was also wearing me down mentally. I felt tired all the time, despite getting plenty of sleep. Even so, I refused to nap during the day, suspecting that this would be the start of a slippery slope that ended with my spending most of the day in bed.
I didn't fully appreciate it at the time, but chemoradiotherapy had also affected me cognitively. What I mean by that is that my ability to work through problems was impaired. I would actually feel a physical sensation of fatigue as I tried to solve mundane problems such as navigating an unfamiliar building. I was worried that straining to solve problems like this would eventually yield bad solutions. As a countermeasure, I had asked a few people I trusted to tell me point-blank if I stopped making sense, or started to behave irrationally. Nobody had done that so far.
But on May 16, I would come closer than ever to doubting my ability to think for and take care of myself.
My commute to treatment involved some walking and a train ride. On the way to the station, I was stopped by a young man. He was about 5'6" tall, had long dark hair and a dark complexion. In his hand he held an expired movie ticket.
"Is this the United States of America?" the young man asked me just as I was about to exit a breezeway. He showed me the ticket, allowing me to see his thumb under the word "contract."
"Yes," I said.
Normally, I would have kept walking and thought no more of it. But things were different now. My brain surgery had cast an absurd light over many of life's events. The entire situation, from being diagnosed with an incurable, fatal disease, to the conversation I was now having with this total stranger, seemed unreal, even absurd. More practically, however, I was now using a walker. I could neither flee nor fight if it came to that. Seeing that it was just the two of us in the breezeway, and growing angry at this latest batch of manure life had thrown on top of me, I decided to play along.
I suggested that if the young man disagreed with the ticket's terms, he might speak with the theater manager.
"What's legal and what's right are different things," said the young man. I didn't disagree and said so. Just before I was about to push my way through the breezeway's double glass doors, the young man opened one of them for me.
At this point I noticed that the parking lot was completely empty of people in the early morning. I'd noticed this before without thinking much of it, but now the observation left a knot in my stomach. There were some cars, but not a soul around.
As we walked along the sidewalk, the young man asked, "Are you a drinking man?"
It's possible for a conversation to be both absurd and obvious. This one was a good example.
"No," I answered. It was true. I used to drink occasionally, but since my diagnosis, I hadn't had a drop. Something about knowing that my blood-brain-barrier had the consistency of Swiss cheese had taken all the fun out of recreational drugs.
"It used to be that sharing a drink with someone would have been a crime. You asked if the other guy was a drinking man so you knew where you stood."
The young man was, of course, talking about Prohibition. But by extension he was also talking about current US policy on other recreational substances. Obviously, the young man was interested in at least one of the following activities:
- selling me drugs
- buying drugs from me
- doing drugs with me
At this point that I realized the course I was on would lead to an elevator ride to the top of the parking structure where the station platform was. If I couldn't shake my new best friend, we'd be riding alone in that elevator together.
I decided that there was no way this was going to happen. I'd stall him outside the parking structure until either I saw someone, or he left in boredom.
Doing something completely out of character, I asked the young man his name.
"Jorge," the young man replied. "But I go by George. I'm named after my dad, who was a deadbeat."
"I can relate to that," I said. It was the truth.
George told me a lot of things. He said that he was abused as a child. He said he'd never gotten a lucky break in his life. He said he came to the US from Latin America. He implied that he was homeless. He said that the police hold open your eyes as they pepper spray you. I got the impression that George wasn't so much dangerous as desperate. It seemed like he wanted someone to listen. So I did.
Worried about missing my appointment, I explained that as a terminally-ill cancer patient with about a year to live, I had all the drugs I could take and then some. Anything I'd take recreationally would just end badly.
George told me, "Man, don't believe the doctors. There have been women who doctors said couldn't have kids, but they do anyway. I'll bet you could ditch that walker right now if you wanted to." He wasn't exactly wrong. I was using the walker for balance, not support.
Then George told me something I'll never forget: "I measure a man not from the ground to his head, but from his head to the sky."
I told George that I hoped his luck changed, and explained I was late for treatment. We parted ways and he didn't follow me.
Treatment itself was uneventful. But during the return trip something happened which led me to question whether George was even real.
As I rode the train back home, I suddenly heard the name of my stop. Realizing that I needed to exit immediately, I struggled to gather my wits and get the door open. This was, of course, much harder than usual because I needed to deploy a ramp to get my walker out. I'd fumed about how difficult it was to do this many times even without time pressure. Now I missed the stop, watching the station pull away into the distance.
I exited the train at the next stop, and took the next train back. On my way back I suddenly realized I'd missed my stop again. Despite my best efforts to pay attention, the station had been announced, and the train had stopped. But I had apparently just sat there, spaced out.
I ended up exiting one stop further along than where I needed to be. I had some time to kill, so decided to fill it by walking the length of the station. (This kind of impromptu exercise was part of my Principle of Least Convenience approach to always-on physical therapy). Unfortunately, as I paced I had absentmindedly crossed the tracks. As I waited on the platform I realized I was about the take the train headed in the wrong direction.
In the hospital I'd been asked to do cognitive assessments like drawing the hands of a clock pointing to a given time, or subtracting a number from another number, then from the result and so on. Although I didn't always know exactly what my mistakes were, I could always sense when I'd made one. Standing on the platform of that unfamiliar train station, facing what appeared to be the wrong direction, and without a clear idea of how I'd landed in this predicament, I had a similar sensation. I just stood there thinking and looking around for five minutes before I was sure of what I was doing.
Eventually I boarded the right train headed in the right direction, and exited at the right stop.
Dr. Neuro-Oncologist seemed only slightly concerned by my story. "You may have just fallen asleep on the train," they suggested. "The fatigue from chemoradiotherapy can come out of the blue. If something like this happens again, please be sure to call me. You might also consider scheduling some time to take a nap." It wasn't the worst idea I'd heard that day. All the same, I'd left George out of my story.