"I am drowning. There is no sign of land." - The Mountain Goats (and also Depression!TikTok)
Before all of this happened, I’d never had a CT scan before. Now I’ve lost count of how many I’ve had, but even though the process feels rather routine at this point, it doesn’t take away the anxiety. There’s the anxiety you’d expect--what will the results be, when will I get them, what will happen afterward. But there’s the anxiety related to the scan itself. Getting the IV placed. Wondering if I’ll randomly have a negative reaction to the contrast. Hoping I do everything correctly during the scan so the results come through clearly. There’s not a lot I have to do. Just lie there, mostly, in the positions they tell me, and listen to the directions from the machine. “Breathe in,” says the robot man. “Hold your breath.”
After what feels like 45 minutes, he eventually tells you to breathe again, but I feel like I’ve been holding my breath since my scan two weeks ago, even though I already have the results. They weren’t good. The cancer has grown in all locations, meaning it’s no longer responding to immunotherapy. This isn’t great news. It’s pretty devastating, honestly. I don’t really know what else to say about it (she said, before writing 1000 more words.)
After we’d had some time to process the news, and my medical team looked into all the potential treatment options, we met with my oncologist to talk about next steps. This helped, not only because I love my oncologist, but because it feels good to have a plan. Even though the plan is...more chemo. (For a period of a few hours on the day I got my results, I thought it was just going to involve more radiation (to my chest, my face can’t have anymore) and when a friend asked how I felt about it, I said “at least it’s not chemo.” So. Yeah.) This time, I’m not going to get away with just two or three doses of chemo. This time, it’ll be once a week, for as long as it’s working. (Concurrently, I’ll be meeting with another doctor about a fancy clinical trial that I would hopefully be accepted into so keep your fingers crossed.)
I have a nervous tic that I’ve had...forever, really, that pops up whenever I’m stressed/anxious/thinking/bored. I twirl my hair. No matter how short my hair is, I’ll still manage to find a strand to twirl when needed. Since I haven’t had a haircut in over a year (except for the one I gave myself after watching a YouTube DIY haircut hack, which sounds like a terrible idea but ended up being fine?), I’ve had no trouble as of late finding all the hair I need to twirl. Which has been good, because I’ve had a lot of thinking to do.
Unfortunately, I’ll likely need to find a new self-soothing activity soon. I lucked out (???) during my last chemo sessions, because it wasn’t the kind of chemo that causes your hair to fall out (instead, it just potentially causes hearing loss, kidney failure, etc). But not this time. This time, all my hair is going POOF bye bye. I’m glad I haven’t sprung for an expensive haircut lately.
I honestly don’t know what to do with myself at this point. I’m still able to go about normal day-to-day life when I have to, but the in-between times are the worst. I can’t turn my brain off, which leads to anger or tears or both. I’ve been sleeping a lot, more than is probably needed, because if I’m asleep, I don’t have to think about all of this.
We’ve spent a lot of time lately trying to distract ourselves with TV, including the entirety of the Netflix show Maid. No spoilers, but there’s a point in the show where the main character crawls into the back of the couch (not literally, obviously) and finds herself at the bottom of a deep, dark well and when I tell you I’ve never related to something more…
To be honest, I feel trapped. I feel trapped in this failing body, like I’m on a sinking ship with no lifeboats and there’s nowhere to go but down with the ship. There are moments, when I’m very still, sitting on the sofa, staring at nothing while my brain keeps spinning and spinning, that I have the impulse to get up and just...move. Swing my arms around, throw things at other things until they break, start running and never stop. Like I can run away from myself, my body, this entire situation. But I can’t. I’m stuck.
I don’t want to be pessimistic, but the fact that no treatment has worked long term makes me not very optimistic about the future. I’m torn between wanting to stay positive and wanting to be realistic--to not get anyone’s hopes up (including my own) that there’s some miracle cure out there just waiting to be found. At my recurrence appointment back in April, my oncologist said we were heading into the unknown in terms of treatment. I still thought...I don’t know, I still thought things would feel more hopeful. More certain. Right now, it feels like we’re living two or three months at a time (the time in between scans) and it’s hard to go about real life in that way. It’s impossible to plan too far into the future when you don’t know how you’ll be feeling. It’s harder if you’re not sure you’ll even be here.
I still find myself stuck on how this happened. Every time I have an appointment, I catch myself asking questions that basically amount to “WHY” and “HOW” and “Can we please undo this?” It’s hard to wrestle with the fact that these brilliant doctors can come up with all kinds of state-of-the-art treatments, but there’s still so much they don’t know about cancer. They don’t know why mine is so aggressive. They don’t know what caused it. They don’t know why it stops responding to treatment. None of us know what’ll happen next.
Things I do know include:
I will be starting chemo this week. It will hopefully help stabilize things for longer than the immunotherapy did.
Turns out there are lots of fun wigs out there.
My medical team is on my side, ready to give me whatever I need to stay as comfortable as possible.
Joe = heart eyes.
Also important, I suppose...I know that, at this moment, I am safe. I am OK. I’m still able to do the things I like (if I can pull myself out of the depression hole long enough to do them). And that’ll have to be enough for now.