Image: Eden and me, chemo #1
My first day of treatment (Feb 10) was scheduled as a joint chemo and radiation day. There will be one of these days per week and the remaining four will be radiation only.
Chemotherapy
There’s such cultural terror around this word. Before going through this experience, I didn’t know much about it except that it makes your stomach upset and makes you lose your hair. As my treatment day got closer, I started worrying about experiencing immediate discomfort from the medicine. I also imagined that as time wore on, I would begin to feel dread and resistance around going to the appointments.
In a practical sense, this is the only thing that happened during my first day of chemotherapy: I was given an IV, some blood was drawn and tested, and then I was given a series of infusions of anti-nausea meds, the chemotherapy med (called Cisplatin), and steroids over the course of about seven hours. No side effects that I immediately felt.
But in a more personal and awesome sense, I had an entire day with my daughter Eden, which we spent clowning, talking, playing chess, and having lunch together. Her husband Ian, whom I was also really grateful for, drove us and brought us lunch. Her chess game was ruthless. She’s only really started playing with him in the last several months, and she took me out in ways I didn’t expect both times. I was proud of her. At one point I took a nap while she read a book.
Radiation Therapy
I had been told, or mistakenly understood, that radiation appointments took an hour. Instead, what happens (at least so far) is that I get to the radiation, get into position on the table, the treatment starts, and it’s over in about ten minutes. Lots easier than I expected.
The tricky part is that, a couple weeks before this treatment begins, they made a polymer, thin cast of my head, neck, and shoulders, a very form fitting hard covering. When I lay on the table to get the treatment, the mask has to be stretched hard and clipped into about eight places on the table. One nurse said last week “It’s not like we’re locking you in. You can get out if you really need to.” It definitely feels like being locked in. It’s not comfortable for anyone who has claustrophobic tendencies, like me. When the people leave the room to be safely away from the radiation, I have to contend with the fact that I’m stuck there, and can’t easily get out without waving my arm or trying to make a sound.
So, this is where meditation comes in. I do my best to concentrate on my breathing and only that. Whenever thoughts or feelings come through my awareness, be they fearful or curious ones, I focus my attention back on my breathing. I remind myself that this will be over relatively soon, and that the only thing I have to do while I’m laying on the table is breathe. So, I just keep breathing, really intentionally.
Good news: they will play you whatever music you want in there. So far, during my simulation appointment (where they make the mask) and radiation appointments one and two, I’ve listened to Tracy Chapman, Marvin Gay (he was already on when I came in, and whose going to change that?), and Jean Dawson.
As with chemotherapy, there has no immediate pain that I’ve experienced from the actual radiation experience. Those effects, they keep reminding me, will be cumulative. So, you don’t “feel” the radiation.
Minor but observable side effects
I will say this: it seems true that the attention that the team wants me to place on diet and swallowing do already seem to be relevant. Yesterday, I realized that I only ate a protein smoothie and one meal (no snacking). It wasn’t out of feeling sick, but just not really thinking about it or wanting to eat (which is unusual because the first and second days after a chemo treatment, you take steroids which often make me eat). Additionally, by last night (day 2), I was already noticing some very small changes in how I was swallowing. This, I understand from all the orientation materials, is caused by the effect of the radiation on the muscles in my throat. I am glad that I stocked up on smoothie materials. Today, I’ll begin doing a series of exercises the team recommends to keep my swallowing muscles strong.
Lastly, weirdly: in just two days of treatment, I can already feel a significant change in the size of the tumor on my lymph node. It’s probably shrunk in size by half. I am reminded, though, that side is secondary, and the original site of my cancer is at the top of my throat. I never felt anything there until things moved to my lymph nodes, so there are much smaller, less obvious places where this cancer exists that I won’t be able measure any kind of shrinkage over the next 7 weeks.
I’m posting other content today about transportation hacks for getting to appointments and suggestions about how to be intentional about support with family and friends.
