A Day in the Life: Chemo Edition
Firstlies, I want to say thank you to everyone for your support and kindness after my last Bad News infodump. I can’t tell you how comforting it is to be surrounded by so many good thoughts and, maybe the most important thing: anger and curse words. Something I’ve been pretty A+ BAD at is responding to all the comments and messages we’ve received, and for that I’m sorry. I will say that I read every single one of them, and they really do bring a lot of comfort, so thank you for that.
The bulk of my thanks, however, goes to my mom, who dropped everything to come to Washington after we received the Bad News, so Joe didn’t have to cancel the trip he’d already planned to see his family for the first time since before COVID started (I KNOW). Mostly, Joe didn’t want to leave me all alone in case something happened but it turned out to be excellent timing, because my first chemo infusion was scheduled for my mom’s first day here. What a fun excursion! In all actuality, she did say she was glad she got to come with me so she could see what the cancer center was like, and because it gave her a closer look at what my appointments entail, because as she said, I tend not to go super in detail here about the medical stuff. (Mostly because I tend to spend so much time talking about FEELINGS, but I think I also tend to stay away from it because I don’t want it to seem like I’m whining about just “how hard” everything is because duh obviously it’s hard, Jennie, everybody gets it.)
After my mom mentioned it, though, it occurred to me that some people might be interested. I did talk about the surgery and radiation way back when and now that I’m crossing weekly chemo off the Cancer BINGO card (worst game ever), HEY let’s talk about it.
A Day in the Life of a Chemo Cancer Patient starts around 7am, when I roll out of bed at the last possible moment, get dressed, and eat whatever I can get down before it’s time to leave. Then it’s time to make the drive to Seattle, something that is OK on a good day and NOT SO GREAT on a bad day because TRAFFIC. The day my mom was here, we were actually late to my appointment because of an accident or because it was raining or because it was slightly dark, or all of the above WHO KNOWS.
Upon arrival at the cancer center, we go through the COVID screening area, I promise them that I haven’t been licking COVID patients, and they give me a sticker that says I’m clear. Then it’s time for the blood draw, which I have every week prior to chemo so they can make sure my body is strong enough to handle another dose.
The thing about the blood draw is, when you have your blood taken and IVs placed often enough, you can tell immediately, like as soon as you sit down at the tech’s station, if it’s going to be a good experience or not. It’s something about how confidently the tech gets all their supplies in order, or the look on their face when they look for a vein. Lately, I’ve had pretty good luck and this day was no exception: only one poke and my IV was placed and blood was sent off for testing.
Then we go upstairs to meet with my doctor. This is usually a bit of a wait, so there’s time for my lab results to come in. These appointments are fairly routine at this point. I get my vitals taken, head to the exam room, fill out a form about what symptoms I’ve been having, and then the doctor comes in, we talk, there’s a brief exam, and they give me the green light for my infusion.
After meeting with the doctor, provided all goes well, I go upstairs (so many upstairses) to check in for my infusion. Once I’m called back for my infusion, we go down long, twisting hallways to get to my room for the day. Because the infusions are a few hours long, I get a hospital bed and my mom (or whoever is with me) gets a comfy chair. They give us a menu in case we get hungry, and everyone who comes in the room asks if we need anything every time we see them. I ask for a warm blanket and an extra pillow, and proceed to get situated for a long afternoon of PUMPING MY BODY FULL OF DRUGS.
I’m now receiving two different drugs: one is a traditional chemotherapy drug, and the other is an antibody that the pharmacist told me, and I quote, “goes into your body and PEW PEW PEWS the cancer cells.” I receive the chemo drug every week, and the antibody every other week. Every fourth week, I get a break from both. Both have side effects ranging from serious to mildly annoying.
Before we get started with the infusion, my nurse (who I will call Jackie) tells me that a lot of people have an allergic reaction to the chemotherapy when they first start. Though, it’s not actually a reaction to the chemo, but to whatever they mix the chemo with to make it shelf stable. Therefore, I will be receiving a series of drugs before they give me the real stuff, and those drugs include: Pepcid, a steroid, an anti-nausea drug, and Benadryl. All of these are injected straight into my IV and if you’ve never had Benadryl injected straight into your bloodstream, well, you’re missing out. Jackie told me it’d make me tired but I didn’t think it’d be right away, so I was sitting there, trying to keep my eyes open and my head from hitting the pillow when she finally said, “You can go to sleep if you want,” and then I did immediately.
After the pre-meds, I get the antibody drug (not that I remember it, being passed out and all). If that goes well, then it’s time for the chemo. Unfortunately, I was one of the lucky people who had an allergic reaction despite getting all the drugs beforehand. At first, I didn’t realize anything was happening but Jackie had already told me she was going to stay in the room and basically stare at me during the beginning of the infusion, because that’s when most people have the reaction. For me, it started with a funny taste in the back of my throat. Then I got really hot and started having trouble swallowing, so Jackie wisely stopped the infusion. When she took my vitals, my oxygen had dropped and my blood pressure was high. They were prepared, though, with more Benadryl (dear lord), so she gave me another dose of nap-nap juice, and then tried the infusion again 20 minutes later. Unfortunately, I started having the same reaction again. She went to get the head nurse (I’m sure there’s a different name for this person but idk what it is), who came in and asked me a bunch of questions about how I was doing and what had happened.
“You’re remarkably calm,” she said. I just shrugged. After a lifetime of not being able to show how I’m feeling and what I’m thinking via my face, I’ve given up trying to explain.
“That’s just her,” my mom explained for me. I shrugged again and told them I figured they had it covered. (Also, just, at this point? Whatever happens happens, and it’s completely out of my hands. Shoot me up with whatever you got, especially if it leads to instant nap.)
They then gave me a big boy steroid and slowed down the infusion, and everything was fine. I’m still OK to receive the drug (I’ll just need all the pre-meds again, before every infusion, while most people get weaned off of those eventually), but YOU GUYS I got my first ever drug allergy in my chart. WHAT A DAY.
By the time my first infusion is over, it’s after 6, which meant my poor mother had to drive us home during Seattle rush hour IN THE DARK and IN THE RAIN while I tried not to fall asleep in the passenger seat. We got home about 12 hours after we’d left and I immediately changed into (different) pajamas, drank a smoothie, and collapsed on the sofa for the evening. We spent the rest of the weekend watching Downton Abbey while I drifted in and out of consciousness, battling just the slightest bit of nausea.
Can I tell you the most annoying side effect (so far)? It’s one from the antibody drug and it’s that it can cause a rash that looks like acne on your face. I thought I’d escaped it but then I woke up one morning looking like my 13-year-old self, “pimples” all over my nose. It got pretty bad and, because it’s not really acne, you can’t treat it as such. My doctor gave me a prescription to help and FINALLY it is. It might sound strange but that side effect was bothering me more than any of the others? I already feel like a weird monster most of the time, I really didn’t enjoy also looking like I had the plague. Also it hurt a surprising amount. So I’m hoping that it continues to go away and stay away and that the rest of the side effects aren’t too bad.
The best part of the entire experience (or...the only good part really?) was that my mom was here for all of this. We didn’t go anywhere (other than the doctor) or do anything (other than binge Downton Abbey) but I can’t explain how comforting it was to have her there, on the other end of the sofa, as I napped and rambled around the apartment. Even if, like the asshole I am, I still refused to let her do anything for me, even make me tea, because I am a monster who will never learn.
This feels like the most phoned in post ever but BIG SHRUG. At least it displaces the last one, which was just full of sads and feels and not a lot of room for hope. It’s understandable, it’s just the reality of the situation at this point, but as a real Optimist Prime, it’s hard for me to leave those difficult feelings and fears out on display. I will say that, while things are still hard, and every day is a struggle to crawl out of that deep, dark well and not dwell on the worst case scenarios, the chemo is showing signs of working (though we won’t know for sure until my next CT scan) and, if nothing else, the pain has gotten better. After the shit news I reported last time, it doesn’t take much to get to Slightly Better, but I’ll take it.