Radiation is over!
Radiation. Is. Over.
I keep reminding myself, over and over again, to make extra sure it’s real. That it sticks. That I really don’t have to go to the hospital every day. Chemo is also over, but the radiation is really what has taken the most out of me, both physically and mentally, and it’s what I was most looking forward to being over. (Also, when I got chemo, I got to lie in a bed and watch movies or read, so at least that part of it was much more enjoyable, even if the after effects weren’t).
I’m still having lots of side effects, which will likely hang around for a while, but my doctors have all commented on how well I’m doing. My medical oncologist told me last week that I’m handling this treatment a lot better than most people (yay for my kidneys not shutting down!), and that they used to hospitalize people for this treatment, which is a bit terrifying. At my appointment yesterday, the nurse practitioner and I were talking about my pain and she said that she’s seen big, burly men come in crying because of the pain, and I’m getting by on minimal pain meds. (This is not to say I haven’t cried because of the pain, I just don’t do it in front of the doctors.)
Still, I have a hard time believing them when they say I’m handling things well. I don’t think they’d lie, but I also wonder if it’s just a way for them to keep my spirits up. I don’t feel anywhere near in need of hospitalization, but I also don’t feel particularly well. I feel incredibly run down most days, and they weren’t lying about the radiation side effects being the worst the first two weeks after radiation. Honestly, it’s been kind of a relief to be so tired because I can at least try to sleep through how shitty I feel.
My doctor also cautioned me to keep my expectations low in terms of my energy levels. She said a lot of people think that as soon as treatment is over, they’ll be able to jump back into real life like nothing has changed. She said not to be surprised if things that used to require little to no effort were now completely energy-depleting. It was like she read my mind, because as she was saying it, I was planning all the different hikes I wanted to go on now that radiation was over. And her words proved to be correct. I can do about 30 minutes of activity before feeling like I need a nap, or at least need to sit down for a while. I know it’s going to get better but it’s so frustrating not to be able to force my body into doing what I want it to.
But, in the meantime, at least radiation is over. The positives of that cannot be overstated. On my last day, everyone there knew it was my final treatment. I knew I’d be emotional that day, but I was surprised to find myself on the verge of tears any time anyone even acknowledged that it was my last day. Every time someone said congratulations or good job, I felt a lump grow in my throat and all I could do was nod and smile at them.
When it was over, I got to keep my radiation mask as a fun prize. It looks like this (brace yourselves):
I know it looks like...a lot. During treatment, I would lie down on the table (made of the hardest surface known to man) and they’d give me a heated blanket, which was the only pleasant part of the experience. There were pegs by my hips that I’d have to hold during the treatment, to keep myself still. Then they’d give me this weird mouthpiece on a big popsicle stick that I had to keep in my mouth the whole time. Only then would they fit the mask over my face, maneuvering it around the mouthpiece and then latching the blue part of the mask to the table. I’m fairly claustrophobic and I’d have to talk myself down from panic each time as I realized my head was literally strapped to the table, reminding myself that if there was an issue, all I’d need to do is motion to the team (since I was on camera) and they’d come in and help me. Music would play in the background (my favorites to request: Lizzo, Florence & the Machine, Beastie Boys, Queen, and 90s pop mixes), but it never really could get loud enough to drown out the machine that would rotate around me, beeping as it blasted radiation into my head.
When I got back to the lobby after the final treatment, Joe was there (obviously), but I was surprised to find my nutritionist and my radiation nurse were also already waiting. They asked how I was feeling and I immediately burst into tears. We chatted a bit and my nurse asked if I was ready to ring the bell. I didn’t mention that I’d been ready since treatment started. I rang the crap out of that bell, everyone in the lobby clapped, I cried some more, and that was that. We were done.
Since then, I’ve felt a bit lost, to be honest. It was different when we were going to the hospital every day. I had a bit of a routine. And now? While I still have appointments (I’m not getting rid of those any time soon), they aren’t every day, so a lot of the time, I wake up and am not really sure what to do with myself. I’m supposed to be using this time to heal, for sure (and if sleep heals, I should be healing A LOT), but like...what do I do all day? It’s been so long since I haven’t worked full-time. And sure, if I felt good and if COVID wasn’t a thing, it’d be super easy to fill each day. I could go on so many hikes! Go to the movies! Go visit people! Volunteer! (I mean, I know if I felt well enough to do all of those things, I wouldn’t HAVE all of this free time, but whatever.)
It’s something I’m going to need to get used to, though. Just because treatment is over doesn’t mean I’m back to normal. I still can’t talk very well, I’m still getting most of my nutrition via tube feedings, and I’m still unsure about what exactly the path back to normal looks like. I’ve got a lot of support via my medical team, but it’s still this big unknown. What will life look like a year from now?
I guess none of us really know. I certainly didn’t think a year ago that this is how I’d be spending the remainder of 2020. (I mean, I don’t think any of us could have predicted most of 2020.) Anyway. Wherever 2021 leads us all, I hope it’s somewhere good.
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