The Challenge of Life
I'm Not in a Hurry
So, last month was the one-year anniversary of the MRI scan that showed worrisome areas that turned out to be a recurrence of my brain cancer.
Remember? We had to rule out a stroke first. That took a little while, so I didn’t actually start treatment for that recurrence until February, which means last month, I finished my tenth cycle of chemo.
When newly diagnosed, the standard of care protocol suggests six monthly cycles, but we’re way past newly diagnosed. We’ve reached the end of most available literature, and we’re writing my case in real time. When I was first diagnosed, since I brought it up, we went for 11 months. The plan was for 12 cycles this time, but that’s somewhat arbitrary, aka clinical judgment. The revised plan is to more or less stay on the drug as long as my blood counts rebound between cycles, which is already getting a little sketch, and the chemo continues to control the tumor. If either or both do not hold, it’s off the drug and onto the next chess move.
This year of living with recurrent disease hasn’t been a whole lot different than the other seven. This year has been a lot like the other seven, in fact, but concentrated into a distillate I’m micro-dosing while attempting to live my life. There are drops of existential dread here and a couple of drops of intrusive thoughts there.
Some things are different. In the past, I’ve been deeply involved in the science. I’ve made a pretty solid run of it as a patient advocate serving on scientific review panels and the sort. Really cool stuff. I love it. But I’ve distanced my biographical self from the Adam who serves on those panels and committees. I’m, oddly or uncharacteristically, putting off any research or consultations regarding my own case and just, well, doing other things.
I’m not in a hurry. That’s how I imagined myself saying this.
And I guess it’s true that my behavior suggests I’m not in much of a hurry. I haven’t followed up on a consult I was in the middle of setting up. I’ve pushed the whole conversation out of mind: What next after the chemo fails?
Depression, defeat, and acceptance are carved from the same block of wood. Or it seems that way, anyhow. Three blind folk rubbing different parts of the same elephant.
There’s a scan next week. We’ll get blood, too, after the MRI, and start chemo if the counts are in decent shape. I’ll see the doc the next day. That means that I may start chemo the night before getting good or bad news after the MRI scan. That’ll translate to a really good or really bad dose of chemo.
Maybe you see why I’m not in a hurry. This is serious stuff.
We pay attention to certain days, certain months, certain seasons, even years. All my favorite albums are turning 20, 25, 30 years old around now, and that’s making me pay attention to all sorts of things.
I just about missed it last month, but then it hit me. Well, I’ll be, guess it’s been about a year then, has it?
Maybe y’all got those days and months and years that you’re not in much of a hurry to see anytime soon. Keeping ourselves whole while we wait on ‘em is the challenge of life.