I haven’t written in a while, partially because every time I get halfway through a post, things (or how I feel about things) change, and I reread the post and am totally exhausted by the idea of rewriting it. And posting something that no longer rings true seems weird—particularly if I say I’m feeling good, I’d get texts from my loyally reading friends celebrating feeling good and have to reply “no no actually today I feel like total garbage but not posting felt like a waste,” so my Notes app on my laptop and phone just kept filling up with two paragraph-long updates. So here’s a recap! First, to situate where we are in treatment: Monday, October 22nd, will be my final chemo infusion. I started treatment in March with three immunotherapy infusions over nine weeks, followed by about six months of chemo (12 infusions each two weeks apart, two infusions per round, six rounds total). The clinical trial I’m in generally calls for between four and six rounds of chemo, and I’m special and got the larger end of that range. But I do not need to do radiation, so as long as this sticks and I don’t recur before my six-week PET scan, I’m completely done after this upcoming infusion. More on being almost done in a later post, though (maybe? I have cancer and am extremely unreliable so I don’t know why I’m making random post commitments. 50/50 chance?). This is more of a recap of the last week or so.
Right now, I’m feeling pretty okay, partially because Nico and I are back at the magical Michigan house for a few days. I desperately needed a break from our apartment, and we are getting our fill of this quiet, beautiful place—and pie—before we head back tonight for the final push.
About two weeks ago, I felt stronger than I had in a while: I ate almost what I wanted without major consequences, I slept well, my energy was up, and suddenly I could see the end of treatment ahead of me. I thought, two more infusions?? I can totally handle that! That one was no biggie compared to the last few, and I thought maybe my body just learned how to handle chemo after all these months. Obviously I knew that that’s not how chemo works, that every infusion is different, it’s cumulative, you can only adapt to it so much, etc etc science. But for a few days, I thought it wouldn’t be so bad for the last six weeks. I started planning post-chemo life, full of exciting things like leaving my house and going out to dinner in public places (bold moves!).
And then the morning of my second-to-last infusion rolled around (last Monday), and my body rebelled. On Sunday my gums were swollen, which is sometimes an indicator that my body is fighting a bug—but also seems to happen a little bit the day before every infusion so I didn’t worry too much about it. A friend of mine is a periodontist (super trained dentist who specializes in gums), and when I asked him about it (you’d be surprised how useful it is to have a personal periodontal consultant during chemo), he said that stress can cause inflammation and it’s possible that the reaction had to do with my knowing chemo is coming. Lots of chemo patients get anticipatory nausea, where their body freaks out before they get chemo from the stress of knowing how bad they’ll feel later. But despite being a naturally anxious person, I hadn’t had many anticipatory symptoms for the last few rounds, just light nausea when I smell the hospital.
Nico had to travel for work Monday-Thursday, which was hard on a chemo week but a rare time when he absolutely had to go. When I got diagnosed, he also got a new job within Google centered around building a brand new training program. It launched in New York (where we are supposed to be living right now for said job) last week, and the timing happened to fall around an infusion–and my best friend also had to travel for work that week. Such is life. And really, such is our life this year. We’re so used to things being annoyingly timed that we are no longer surprised when it happens. I woke up a little while after he left and didn’t feel great, but decided to wait until I knew he was through security to let him know. E, my roommate from when I lived in DC, was visiting with her husband, A, to help out while Nico was gone (because once again, I have the best friends), and I texted both of them that I wasn’t feeling great and asked if they could come over earlier than we’d talked about the day before. They got there fast, and by the time they did I’d thrown up twice and realized I was running a low grade fever— in the high 99s, not quite at the 100.5 threshold of a neutropenic (low white blood cell) fever. One of the interesting things about having cancer has been seeing how my friends deal with intense situations, and in this case E&A were awesome.
We have a mouse in our house, which had kept me up some the night before—I couldn’t sleep in general, which is normal for my chemo regimen, so I went out to the couch to read. Then I saw that bold little jerk run out from under our couch. WHAT IS HE EVEN DOING IN OUR LIVING ROOM?? I’d jumped up on the couch and then dashed into our bedroom, accidentally/on purpose waking up Nico in the process. He walked out to the bathroom and there was the mouse, just hanging out next to the couch. Eventually Mickey thought to be afraid and retreated, but mostly he seems unbothered by our presence. I relayed this to E&A, and A immediately went on a mission to check under the couch (which I didn’t even want to go near) and plug up any possible mouse holes. He went off to the hardware store, moved furniture around, searched our radiators for holes the management company missed, the full treatment. E made oatmeal, nudged me to eat and drink more water and a full Gatorade, made sure I messaged the medical team about my symptoms, and just stayed preternaturally calm about the whole thing.
They both acted like all of this was normal, like we always deal with cancer and rodents on Monday mornings, and that helped a ton. I was freaked out not about being sick, but about whether this would impact treatment. I worried that they would delay me by a week and started to do the math of when I’d be finished with treatment if they did—what would that mean for Thanksgiving? How long would they delay? Nine (time of my diagnosis) or even six (start of chemo) months ago, I would have pushed back on receiving chemo with a fever. I would have worried if my body could handle it, created scenarios in my head in which I become a clickbait story “YOUNG WOMAN SUDDENLY DIES CLICK HERE TO LEARN THE SHOCKING REASON WHY,” and asked my doctor 100 questions about whether I’d be okay. Instead I went in ready to make the case for getting chemo that day—I could handle it, my body would beat back whatever was happening, and if not they’d pump me up with antibiotics and antivirals and we’d hope for the best. But I didn’t need my arguments. Dr. K was in favor of going full steam ahead, appropriately attentive but not overly concerned about the fever. Her confidence calmed me, as it always does, and we moved forward with scheduling various post-chemo appointments. This is going to end, I told myself. I have the follow-up appointments to prove it.
And then the rest of the week was rough. My aunt flew in to take over when E&A headed out, and she pretty much beasted through the week. She is deeply terrified of mice but after our bold ass friend appeared again, she got more traps and continued the mouse-catching mission. Real love is braving your lifelong fears, I think? She also did all of our laundry, cleaned our house, cooked, and ran errands. I slept a lot, icing the swelling on my jaw from a mouth sore, another indicator that my body was fighting a virus. Daytime sleeping happens in kind of a haze, where sometimes I really want to get up but I can’t quite push myself to be fully conscious—a little like waking up from being sedated. My uncle is an amazing haiku writer (this is a weird sentence but it’s true, he has a gift!) and one that he wrote cracked me open a little and I cried, sick of not being able to do anything. My aunt headed this meltdown off with ice cream (which is also what that particular uncle would want, we share this coping mechanism), and watched To All the Boys I’ve Loved Before (I’m no longer disclosing my number of rewatches) and I had a decent evening for a while.
Then my old nemesis, nerve pain, set in and I spent the evening managing that with a foam roller and hot water bottle, trying to get comfortable enough to sleep. This always happens a few days after chemo because it takes some time for the Vinblastine, a nasty drug, to really hit my nerves—and even though it happens each time, it always seems to catch me off guard because it’s right as the worst of the fatigue starts to wane. What didn’t catch me off guard was Nico’s Thursday afternoon flight getting delayed and then cancelled. All week I’d had a feeling he wouldn’t make it home until Friday, and like I said before, we’re just kind of used to things shaking out that way lately!
After my aunt left the next day, Nico’s flight was again delayed and it was just me (and the mouse) at the house. I don’t mind being alone these days because any interaction takes a lot of effort, but I realized I was again too fatigued to get out of bed. I didn’t need anything, I was fine, but I had another little meltdown that escalated into kind of a big meltdown.
I’m just over this season of my life. I’m over being too tired to do everyday things like get out of bed. The nerve pain often hits in the backs of my calves, so I have to monitor for any swelling, redness, or heat in case of blood clots. I’m tired of looking at my calves, which I’ve wished were thinner since I was 16, and seeing them actually be thinner. I’ve kept my weight up in general and don’t look super sick overall, but my calves are the biggest physical change. The left one is thinner than the right, missing more fat and muscle for whatever reason, and my tibias are weirdly sharp—they protrude down the front of my legs when I move at certain angles. These are not the sexy, thin legs I always wanted. These are the legs of someone who doesn’t go many places or do many things, and I’d like my strong, athletic legs back. I’m tired of the fear that all of the monitoring—my legs, my temperature, my gums, my water intake, my port, my chest pain—comes with, that I feel just on the ledge of safe but never quite safe enough to relax. I’m tired of wondering if I could die if something goes wrong.
And then I feel guilty for being tired. Lots of people don’t get the chance to be tired of their treatment and see the end of it, lots of people don’t get to survive cancer or eventually live a life in remission. On Friday, too tearful and tired to get out of bed, I called a good friend and mentor and told her all of this; she suggested that today, maybe I give myself a break. Maybe I just let myself be tired of this. Maybe I don’t push myself to feel positive and all the stuff that I do to keep smiling and getting out of bed. Maybe today I just stay in bed and be angry and sad and done with the constant changes the toxins bring to my body each day. “You’re still afraid you’re going to die,” she said, “that’s not something everyone deals with everyday the way you do. You’re lifting something very heavy.”
So I stopped lifting the heavy thing, just for a little while. I cried and was angry and sad. And it turned out that I didn’t need to do that for very long until the worst of it started to pass. Eventually I got out of bed, took a long shower, and did 10 minutes on my little stationary bike to get my blood flowing. Then I opened some days-old boxes from a burst of forward-looking online shopping during my good period the week before (almost of all it’s going back, but whatever), and I watched most of a season of Younger, embracing the light escapism of fluffy TV. When I finally stopped lifting, and stopped trying to feel positive or brave or grateful, I found relief.