Reintegration

Updates from May to July & binging Severance

Jul 17, 2025

My last post may have been titled “It’s been a while,” but now it’s been even longer. I’m working again. It’s going okay, but I also haven’t really found my rhythm yet. They say it takes a year to really recover from brain surgery and radiation, and I restarted that clock three times. It’s a more gradual adjustment than I hoped. Progress takes a winding road. Some days, I find that the path looped back while I thought I was only moving forward. I’m making progress, but there’s still a lot of room for improvement.

Overall, I’m busy working on moving past baseline healing, figuring out what works and what doesn’t, and reintegrating. We’re watching Severance (my second time, Mike’s first) and I relate to the mindfuck of “reintegration” much more precisely than the show’s creators probably intended. I wonder if they consulted neuro doctors or patients. Don’t worry, I won’t spoil anything if you haven’t seen it. But also, am I an innie now? You guys would tell me if I’m an innie, right?!

I’ve been wanting to update you all, and I kept starting to write but never finishing and life kept happening. I don’t know how to manage my time and energy yet. I’m doing more in my daily life, which means I don’t usually have much left in the tank at the end of the day. My mental and physical capacity have increased substantially, although the bar for “better” functioning is still pretty low.

With the start of summer schedules, and now that I’m driving a bit, I’m back to being Marty’s daycare chauffeur. It feels good to be playing a more active role in caring for my family again. At this time last year, I was growing increasingly worried about feeling dizzy while driving and my headaches were becoming a daily occurrence. And then I was suddenly out of commission. The first anniversary of my diagnosis is coming up in 10 days. I’ve already started passing the days when my symptoms began amplifying exponentially, clamoring for my attention, and I was still brushing them off. It’s an odd feeling, approaching this milestone. Comparing now and then. Considering what I didn’t know yet. And then everything that’s happened since then. And yet—I can see the ways I feel much better now than I did then.

In other news, I had my 3-month post-radiation MRI a couple of weeks ago. And, drumroll…🥁🥁🥁

No signs of residual or recurring tumor! Not that anybody would expect recurrence so soon anyways, but it’s still a relief. Just “normal” post-treatment changes. And a cavity in my brain, which apparently I will always have. In case you’re wondering, none of my brain was removed in any of these procedures, as is the case for some. It’s just ✨damaged✨

So, I’m through the thick of it. Now what? I’ll have my next scan in 3 months, and then every however often for maybe/probably the rest of my life. I’m still processing everything and maybe/probably will be for the rest of my life. Writing about it is therapeutic and I want to keep sharing my experience. So, a couple of things:

I’ve shared a lot, but I’ve left out more. I’m thinking of shifting to a more topic-focused, essay-type approach instead of real(ish)-time updates. Anything you’re curious about? Let me know.
I’ve kept these updates somewhat private, even though I am open about it in real life. I’ve decided to flip the switch and make these posts public. Solitary Fibrous Tumors are so, so rare. And then on top of that, I’ve had some uncommon complications. And on top of that, it’s even less common at my age. When I google SFTs, let alone intracranial SFTs, next to nothing comes up besides scant, terrifying statistics. It’s almost never included on lists of types of sarcoma, which already account for less than 1% of adult cancer diagnoses. Lucky me. So, who knows, maybe by putting this out there I can help someone else feeling like the unluckiest unicorn in the world feel less alone.