The stereotype of the cancer patient is a fully bald, sickly, looking person, either in a hospital bed or gingerly walking through life and looking frail and vulnerable. That thought's been going through my head recently because it is of course not reality. It fits some patients - and I've looked at some photos from the early days of post transplant and I did look a little sick, and more than a little bald. With my hair (and weight) back, however, there are few if any outward signs that I'm recovering from a stem cell transplant.
As my day-to-day life slowly returns to normal, it becomes easier to disguise the effects and challenges of recovery. On the normal side, I can socialize outdoors, and we even were able to have a Christmas dinner with Stacy's parents! But that doesn't mean I'm not still physically vulnerable. I still can't dine at restaurants indoors, can't gather in a large group, and am masking in pretty much any indoor situation that doesn't involve my immediate family. I'm sill restricted from doing things that might kick up dust and other particles - like vacuuming, mowing the lawn, blowing leaves, etc. I can't spend a lot of time in our basement. I can't take public transportation. And there are some foods that remain off limits (deli meat, soft cheeses, sushi, e.g).
I'm also dealing with a couple of mostly minor physical challenges - perpetually chapped lips and taste buds that, nearly 10 months out, are still not quite 100%. None of that concerns me. But I've been struggling a bit with lung stuff. That's my scientific description. In the summer, I had built up my running distance to a very slow, start-and-stop 2.5 miles. But in the last month or so, I haven't been able to run as I just don't have the wind. Walking our 100-pound not-so-well trained dog, mind you, doesn't faze me.
At my next visit in the end of January, we'll do a lung volume test, which is standard protocol for the 9-12 month window post-transplant. I'm not sure what we will find, but I'd venture to guess that it won't be as good as it was pre-transplant. Now if the end result of all of this is that I can't run for a while, or even for a very long time, that's fine and I can live with that. But to be honest, I just don't know what this would mean if I do have diminished lung capacity. Is it typical post-transplant? Is it something that naturally resolves itself? Is it more of a permanent thing that needs to be addressed? How do we address it if we need to do so?
This has all been running around inside my head these past few weeks. But I'm trying my best to not let thoughts spin out of control. It was great having both boys home for the holidays, and spending time with the extended family as well.
As we close out the year, it's tempting to cast 2023 as an out-with-the-bad kind of year. And we've had our share of challenges. But we've also had our fair share of things to celebrate, not the least of which, of course, was my stem cell transplant. That's always the case; some years are better than others, but in each year there is almost always bad mixed with good - darkness mixed with light.
So rather than start the New Year with resolutions, I'll close instead with this quote I came across at Thanksgiving. It's a good reminder, and a simple but powerful thought.
“I am grateful for what I am and have. My thanksgiving is perpetual.”
-Henry David Thoreau
Here's to a year full of light. Happy New Year!
--michael
