"Of all the timelines, this is clearly the darkest, which is why I propose we commit to being evil." -Abed Nadir

Last week was a rough one, for reasons I still cannot fully explain. Nothing NEW was wrong, but I don’t think there was a day where I didn’t feel tired and down in a deep, dark hole and there DEFINITELY wasn’t a day that didn’t end in tears, at least once. Things seem much better this week. I suppose this is the typical grief-cycle-roller-coaster but it’s very annoying.  

Sometimes I feel like I’m living in a slightly parallel universe than everyone else, especially as more and more people get vaccinated and COVID restrictions start to be lifted. While I was going through treatment, it was almost a relief to know that everyone else was living through a not-so-fun time, too. That it wasn’t just me suffering. It made it a little easier to get through the stage where I was feeling like garbage and couldn’t go to the places I wanted to. Now, everyone is inching their way back into non-pandemic life and I’m still stuck in cancer land. Still, I am thankful that I’m not currently dealing with surgery recovery or radiation or chemo and that, so far, immunotherapy has left me able to do what I want, even if everything is slightly more difficult. 

I was hoping immunotherapy wouldn’t hit me with any side effects, even mild ones, but alas, it was not to be. Nothing has been as bad as radiation or chemo, but the experience has not been without certain annoyances. The most noticeable have been things like an itchy rash on the backs of my hands (that is now gone), an almost constant bad taste in my mouth, and restless legs in the evening and at night, making me feel like my legs are coursing with energy and I just need to kick! (Stretch! Aaaaaaand KICK!) 

The worst thing, though, is that because immunotherapy can cause inflammation, it’s caused some swelling in my tongue, which has made it more difficult to speak. The doctor said that, optimistically, this is due to the drug triggering my immune system to ATTACK ATTACK ATTACK, which can cause swelling in areas where it’s fighting. We won’t know for sure until I have my next CT scan, but keep your fingers crossed that it’s that, otherwise I’m gonna be pissed that I’m going through this again for no raisin. 

Anyway, the swelling makes it harder to talk and sometimes it just plain hurts to talk, so I’ve been trying to avoid it when I can. It’s disappointing, because it feels like I’m backsliding and losing a bit of the progress I’d made. It’s really frustrating, to be honest. I’m hoping this side effect is temporary but if I’ve learned anything throughout all of this, it’s that WHO EVEN KNOWS WHAT WILL HAPPEN. 

I had my second immunotherapy infusion a few days ago, and the doctor helped shed some light on why things might have been so rough lately. Mostly it’s because I’m not great at listening to what my body needs sometimes. I haven’t been sleeping well for my whole life the last few weeks. I don’t remember the last time I slept through the night, or even most of the night, without waking up. Lately, I’ve been waking up from the pain in my mouth that radiates out to my ear. The pain (and don’t forget the Jimmy Legs!) is strong enough to then keep me awake. I’ve been trying to manage it with just Tylenol or Advil, even though I have stronger pain meds on hand to take when I need to. I don’t take them during the day, because they make me feel loopy, and I don’t really like taking them at night because they make me wake up with a hangover. But at my appointment, while explaining all of this to my doctor, I watched her nod for a bit until she finally interrupted me with, “Jennie, just take the pain meds. You don’t get a gold star for being in pain.” 

(“But what about stickers?” I almost asked.) 

My doctors really have me pegged. My surgeon took one look at my face the day of The Bad News, before they’d even told me anything, and asked if I was a bit of a worrier. (HA!) The doctor this week started explaining something by opening with, “I get the impression that you like to have a plan for everything.” So. They get me. Which is good, because they can call me out for doing dumb things like not taking the pain meds they prescribed me for a reason. 

Anyway, since taking the meds at night, I’ve been sleeping better GO FIGURE. My bloodwork all looked great, meaning the immunotherapy drug isn’t wreaking havoc on my internal organs. And the side effects aren’t anything they’d typically worry about, or anything that is really unexpected. The doctor let me ask a million questions (again) and helped point us in a direction (again) to start understanding this, to learn how to walk that line between being realistic and keeping hope alive. 

By the end of the day, Joe and I were both feeling better than we have in, I don’t know, over a month? I’d say things are going about as well as they could be, and things are moving right along.  We’re learning to live with the uncertainty of whether or not this treatment is working. That’s just how it’s going to be, probably forever, and I’m trying to get to a point where I’m OK with that. 

Until then, I guess I’ll just be here, in my slightly parallel universe. You’re all welcome to visit any time, but I hope you’re OK carrying on the lion’s share of the conversation because my face hurts.