post treatment (six months)
belated, but here we are.
i'm a couple months late on this one — my 6 month follow-up mri was actually in early march, but i'm only now getting around to writing it up. i'd like to think the delay is, on balance, a good sign: it means i've been busy living my life again. i started a new job at the beginning of the year, and i've been back to doing all the things i love — skiing, hiking, running, climbing — without my brain tumor being the loudest thing in my head every day. that, in itself, feels like a small miracle compared to where i was a year ago.
so apologies to anyone who has been refreshing this page since march waiting for an update. i'm here now.
the mri
the headline: the 6 month mri came back clean. 🎉
more specifically, the radiologist's report measured the meningioma at 5 x 17mm, down from 6 x 18mm at my pre-treatment scan. on paper that's a tiny bit of shrinkage, and a 1mm difference at this resolution could very easily just be a slight variation in how the radiologist is measuring the tumor, and could mean no change at all.
however, at this stage (6 months post gamma knife radiosurgery), no change is exactly what you're hoping for. the thing they're really looking for at this scan is (1) there's no additional growth, as any additional growth would signal that the gamma knife treatment was ineffective, and (2) that there's no swelling from the radiation — and there wasn't any. so by every meaningful measure, the scan was as good as it could've been.
my next mri will be at the 12-14 month mark, later this year.
side effects (the small things)
now that the big stuff is out of the way, i want to spend most of this post on the small things that have come up over the past 6 (well, technically now ~8) months. nothing here has been major, and i've still been able to live my life through all of it, but i'm documenting them in case any other meningioma / GK patients out there are dealing with weird little things post-treatment and wondering if they're going crazy. (you're not. or maybe you are. but at least you're not alone.)
a big caveat up front: my radiation oncologist said none of these are likely caused by radiation. but the truth is no one (including myself) really knows for certain. some of these could be radiation-related, some could be preexisting, some could just be random life things. i'm sharing them as data points, not as a definitive list of GK side effects.
feeling immunocompromised. for a big chunk of the past 6 months — mostly starting around month 2-3 post-treatment and dragging into months 5-6 — i felt like my immune system was just... off. i used to never get sick, but during this stretch i was getting sick really easily, and i was sick for almost an entire month during jan-feb with one thing rolling into another. for someone whose baseline is "i don't get sick," that was a noticeable shift.
headaches and migraines. i have a long history of migraines that started when i was a teen, but prior to the onset of my double vision a year ago, i had managed my migraines very well for almost a whole decade when i would rarely get one. in february of this year, i was getting headaches or migraines nearly every day for almost an entire month. that was the worst of it, but headaches and migraines have generally become a much bigger part of my life since the onset of my double vision a year ago and have persisted beyond treatment back in september. hopefully they will become fewer and farther between as more time passes.
GI issues. after the headache stretch, i had a fairly long period of GI issues — not going to get into specifics here, but it was a thing for a while and went beyond anything preexisting i had dealt with previously.
dysautonomia / pre-syncope. right around the 6 month mark, i had about a week of pretty extreme dysautonomia symptoms. i have a history of syncope and pre-syncope that started around 15 years ago, so this part wasn't totally new territory for me, but what was new was the duration. Usually my pre-syncope episodes last a few hours, but this time it was almost an entire week, continuously. that was new and a little unnerving, even with my history.
where i'm at now
if i had to put a number on it, my body feels like it's 85-90% back to what i'd consider my baseline. that last 10-15% is hard to describe — it's not anything specific, just a vague sense that i'm not 100% the version of me i was before all of this. but 85-90% is really, really great, especially looking back at how i felt this time last year, and i have full confidence the rest of it will keep coming back over time.
and again — i'm back at work, back on the trails, back in the mountains, back on the wall. i'm taking my dog to agility class. i'm doing all the things i was doing prior to all of this. compared to where i thought i might be after a brain tumor diagnosis, i'll take 85-90% all day.
if you're a fellow brain tumor / GK patient reading this and worrying about little things popping up that don't quite fit the textbook list of side effects: you're not imagining them, and you're not alone. the body is weird. recovery is weird. radiation is weird. all of it is weird. and it's normal for your body to change. give yourself grace, log the things, bring them up with your care team, and try not to spiral. (and if you do spiral, that's also part of it.)
thank you, as always, for the continued support, prayers, manifestations, good vibes — whatever flavor you're sending, i feel it and i appreciate it. i'll be back later this year with the 12 month mri update, and hopefully it'll be just as boring as this one.