"I don't have anything to remind you about..."

Ironic news for Ash Wednesday

The title of this post was messaged to me by my friend Trent this morning as I gave him the news that my cancer is officially in remission. He’s an Episcopal priest, and today is Ash Wednesday—the start of Lent.

A pin made by Trent—well before my diagnosis—that adorns the hip bag that accompanies to many appointments. Nestled beside my true faithful friend, Purell. Remember that you must die, indeed.

I started this website/Substack/blog back in June of last year, well after Lent and Easter. I fancied telling folks that for my Lenten fast I would be fasting from Lent, as all the tests and results and hospital visits were constantly reminding me how ashen my existence is. I still feel that way to some degree this year, despite receiving this news from my oncologist yesterday. But there are plenty of poignant Ash Wednesday posts floating around the Substackosphere, so I’m not going to belabour the point.

My scan a few weeks back was very good. I suppose that’s obvious if you know what the word “remission” means. But I’m used to scans that aren’t very good. Scans that reveal that the disease is still charging around, flipping tables in my guts. This time the scan said, “hey, it worked.” The first scan in December that I posted about proved to be accurate in that everything was headed in the right direction. Now, because the nuclear medicine team has sort of left the door open on their report, there will be another scan around the end of April/beginning of May. But this one will primarily serve to monitor the inflammation around the tumour site and not as much to check for cancer. They usually don’t like to do habitual rescans (and at this point my next scan would be something like six months out), but my oncologist joked that “if they’re offering, we’re going to take it.” I admittedly feel a little nervous about it—what’s not monitored cannot be worried about, after all.

The road to recovery is still somewhat fraught at the moment, however. My bone marrow is responding well to the injections I regularly give myself, which is very good. It’s just not great yet at producing the white blood cells on its own yet. But we’ll get there. Since CAR-T is relatively new, there’s not as much data out there about what’s “normal” for these sorts of things; I could be fine in another couple months, or it could take a year.

This is what happens when your bone marrow responds too well to growth-factor injections! You can see the normal scale of 2–7.5 way over on the left. Thankfully the reaction to this by my doctor was “Whoa! ok, I think we can back off the injections for a bit!”

A week before my scan back on February 20, I had to stop taking the injections as it could produce a false positive of activity in my marrow. Going a week without help meant I crashed out, hit 0.0, and was in the hospital for most of last week after spiking a fever. I’m fine now, and bounced back a little too well, as you can see by the image above. Part of the game now is figuring out how much to take and when, but I’m grateful that my team is going to keep monitoring me closely.

The other fun part of hitchhiking along this recovery freeway is managing my susceptibility to illness. Part of that is keeping my neutrophils up, part is continuing my immunoglobulin treatments, but the other part is vaccinations. At the moment I’m only cleared for “dead” immunizations, like flu. Vaccines that have live components, like for measles, are going to have to wait six months to a couple years from now. So…I won’t be visiting Texas any time soon, sadly. Also, I can’t get any more tattoos for a while, for a similar reason: tattooing is a risk for infection, and until I’m nearly back to normal, it would be incredibly unwise to test my system.

I did make a promise to someone about my next tattoo, though, and I will keep that promise. I just need to figure out the best design and wording. My friends Ryan and Seumas were trying to help me figure this out back in December.

It’s a good thing the third treatment was the one that finally nailed the cancer. If you can’t get it on the first try or the third, nothing else really has that poetic ring to it.

And if you’re wondering, no, I’m not done with this blog, and I still have much to write about. I’m still pondering the virtues, and especially what it means to be viscerally grateful to continue living.