the man in the cap

I can’t stop thinking about the man in the cap.

There are two waiting areas in radiation oncology. The first is in the main lobby area. This is where you wait if you have just a regular check-up, or where caregivers hang out while patients are in with the doctor or back for treatment.

The second waiting area is down the yellow brick road. This is where you wait if you’re scheduled for radiation treatment. Typically, it’s just patients back there, no family, and there aren’t usually too many people waiting. I imagine they try to keep it as clear as possible due to COVID. So far, I’ve only run into a handful of other patients while waiting. One was an older man who also had cancer on his tongue, and was operated on by the same surgeon I was.

The other was the man in the cap. I don’t know his name. I wish I’d asked. He looked to be in his 60s, maybe. He was tall and thin, and had a baseball cap perched on what looked like a bald head. I could see the edge of his radiation tattoo peeking out from underneath the cap. He looked incredibly tired.

We sat in silence for a bit. The waiting area, the office in general, really, is a quiet space. Almost church-like. You can sometimes hear the sound of soft footsteps falling from down the hallway. Quiet voices from the rooms adjacent. Otherwise, you don’t hear much of anything at all.

After a few minutes of silence, the man looked over at me and asked how much longer I had. It’s a common question, I’ve found. A way to designate who knows what’s going on, who’s almost through it, and who has no idea what they’re really in for yet.

“I’m just at the end of my first week,” I explained. “I’ll have five more weeks of radiation and two more chemo sessions.”

(Sidenote: I can kind of talk now! It still doesn’t sound pretty, or like what I imagine I should sound like, but most people can at least kind of understand what I’m saying, even if I have to repeat myself a few times. It’s making life a bit easier, though the man in the cap did have to get up at one point and move somewhat closer to me in order to understand what I was saying. I imagine the mask doesn’t help.)

The man then mentioned that it was his last day of radiation. He’d traveled from Idaho to get treatment for brain cancer, and was headed back home once radiation was over, before coming back in order to take place in an experimental trial. Unfortunately, the treatment he’d gone through so far hasn’t worked.

I don’t know if this is common knowledge (it wasn’t to me before I started this bullshit journey), but when you finish chemo and/or radiation there is often a bell or gong you ring to signify the end of your treatment. From my meager research, the tradition started at MD Anderson with a patient named Irve Le Moyne, a retired navy admiral. He wanted to continue the navy custom of ringing a bell to signify the job was done. The practice stuck, and now it’s customary for cancer patients to ring the bell at the end of their treatment.

I’ll be honest. I know I’m still just at the beginning, but I get a little weepy when I think about getting to that moment. (I mean, what doesn’t make me weepy lately?) Part of it is certainly that I’m eager to signify a real end to all of this, though I know it’ll be something I have to monitor for the rest of my life. Part of it is absolutely that this man, Irve Le Moyne, was also battling head and neck cancer, so I feel a bit of kinship with him. He unfortunately died the year after creating this tradition, but wrote this before his death:

Ring this bell
Three times well
Its toll to clearly say,
My treatment’s done
This course is run
And I am on my way!

— Irve Le Moyne

I thought of this as I talked to the man in the cap, and asked him if he was going to ring the bell when his treatment was over. He put his head down and clasped his hands, and shook his head, smiling a sad, crooked smile. 

“No,” he said softly. “ I don’t think so. My journey isn’t over.” 

I nodded, pretending to understand, but how was I, just a baby on this treatment timeline, supposed to comprehend what this man was going through? What he had gone through? To go through an arduous cancer treatment only to come out on the other side still suffering from the same cancer…it’s unimaginable.

I looked for the right words, though of course there are none, and told him that I thought it’d be OK if he rang the bell. He’d made it through a huge part of the treatment, even if he was still fighting. It would be marking the milestone. He just shrugged and shook his head again.

“I don’t know,” he said. “It feels like cheating.” 

Our conversation paused as a group of medical types walked by and stopped to talk to him. It’s always obvious who has been coming to radiation for a while, because everyone who works there knows them, knows their cancer, knows what’s next for them. I tried to give them as much privacy as I could as they asked him how he was doing and wished him luck for his next step. 

When they left, the man and I chatted a bit more about how shitty all of this is. I asked if he was looking forward to going home and he said yes and no. He wasn’t looking forward to seeing everyone he hadn’t seen in weeks, and having to explain that his treatment hadn’t worked. We commiserated about how exhausting it can be to go into your cancer story over and over with people, how you’re feeling, and what information you want to share and what you want to keep private.

Eventually, they called him back for his final treatment. Before he left, he turned to me, clasped his hands, and said, “best of luck with everything,” seemingly on the verge of tears. I wished him luck, as well, struggling to keep my voice steady. After he left, I sat alone in the room, quietly waiting for my turn in the machine.

The man had told me his experimental trial was a blind trial, so he’s not even sure he’s going to get the potential life-saving treatment it could offer. I’m not really a religious person. I believe in being kind. In helping others. In trying to put as much good out into the world as possible. But I don’t pray.

Still. I’m an eternal optimist, despite the world so often showing me the very worst. I do wish. I hope. And over the past few days, I’ve found myself wishing and hoping, with all my might, that this man gets the non-placebo version of this trial and that it works for him. I hope he’ll be OK. I hope that, somewhere, somehow, someday…he gets to ring that bell.