I like to read. It’s something I do every day. When I climb in to bed at night, I read before I turn off the light. It’s a rule. When I’m acutely tired and my heavy-lidded eyesight is filtered through more lash than ball, I still force myself to squeeze out at least one sentence. As I said, it’s a rule, and there just aren’t too many of those I choose to apply to my life.
Steven’ Rules to Live By:
- Read every night before turning off the light.
- Early is on time. On time is late. Don’t be late.
- Commandments 5 – 7
- Never invade Russia in the winter.
- There is no variety of sliced meat on bread for which mayonnaise is an appropriate condiment.
- Don’t be an asshole.
The only thing about reading I like better than reading is amassing reading material. My wife reads on a Kindle. I don’t. It’s too smooth. Reading should involve texture.
A good used bookstore is among my favorite places on earth. There is no better way to kill two hours on a weekend afternoon than sifting through the shelves of a used bookstore. Used bookstore dust has a smell unique among the dust varieties. It is a distinctive sense memory that explodes the moment I walk through the door of any such establishment regardless of its location, or whether I’ve been there before.
My Chemo sessions generally last four-and-a-half hours, and I manage to read for the first two before they give me the meds that make me not care. This past Tuesday, at my concluding Chemo, I was reading “Stuffed” and came across a word completely new to me. It wasn’t a multisyllabic behemoth of a word, but simple, concise and somewhat lyrical:
- Labile (lāˌbīl) - of or characterized by emotions that are easily aroused or freely expressed, and that tend to alter quickly and spontaneously
The perfect word at the perfect time.
As my final Chemo session loomed, people kept asking me if I was "excited". I don’t think it was really asked as a question, but more as an expression of the questioner’s excitement on my behalf, and a yearning for confirmation. The problem is that I wasn’t then excited, nor am I now. I was a lot of things, but I wouldn’t count excited among them. I was, well, labile. I went from weepy to apprehensive, unsure to resigned. I know why the people who care about me wanted me to be excited, and wanted to share in that assumed excitement, but that’s not where I was. I felt guilty about not being what they wanted me to be, and what, by all accounts, I should have been, and that just pissed me off. I didn’t want to rain on anyone’s parade, but through this whole process I’ve had zero interest in telling people what they want to hear. I have rejected the notion that I am somehow responsible for other people's relationship to my disease. When someone has asked me how I’m doing, I’ve told them.
I kind of sailed through my first three Chemo sessions. There were side-effects to be sure, but they were relatively easy to manage. With each subsequent treatment since my third, however, the side-effects have gotten progressively worse, and I’ve gotten progressively puny. Rather than bask in the milestone of finishing Chemo, I was thinking about the two weeks that follow. My infusion was over in four-and-a-half hours, but Chemo doesn't end when the infusion does. I’m still in it. It’s hard to see past that, and relatively impossible for anyone else to understand.
You may be familiar with the tradition of ringing a bell at the conclusion of your last Chemo session. The wonderful nurses at Levine Cancer Institute brought me a bell on Tuesday, the kind of handbell with which Laura Ingalls was summoned to school. The nurses stood around and cheered me as I rang it, the rapturous ringing expected of me. I thanked them and smiled, and did, indeed, feel happy in that moment, but let us not forget my inherent lability. I walked down the long hallway of the Infusion Center, and near the door there was another bell affixed to the wall, the kind you find at Trader Joe’s. No one else was around, and I just gave it one tepid ring for myself. My eyes welled up and I walked to the elevator.
I will get a PET scan toward the end of April. If everything looks as we expect it to look, I will enter the maintenance Chemo section of treatment. Every two months, or 3,000 miles, whichever comes first, I will have an infusion. It will consist of just one drug, Rituximab, instead of the five I’ve been receiving, and no ill side-effects are expected. Best of all, there will be no more cancer-induced house arrest. I can rejoin the world even with my compromised immune system. (In the pre-pandemic days, people on maintenance Chemo took cruises to Miami Beach and didn’t even catch cholera.) The maintenance phase could last up to two years and is necessary because of the two types of Lymphoma I have, Follicular – the lazy one, has a tendency to transform into Diffuse Large B-cell – the aggressive one. The maintenance treatments are to keep the Follicular from getting too full of itself.
So, excitement may come. Perhaps when I am able to visit a used bookstore again, undoubtedly when I am able to return to the theatre. For now, I’m focused on getting through the next two weeks, but please know how appreciative I am for your excitement on my behalf even if I’m not quite there yet. So, as not to be a
complete downer, I will reach into my pocket, pull out a handful of detached petals, and leave you with this iconic quote from Zuzu Bailey, “Every time a bell rings, some bald-headed dude finishes his last Chemo treatment.”
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| "It's A Wonderful Life (1946)" by twm1340 is marked with CC BY-SA 2.0. |
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