Now that we’re in the second half of chemo, here are some updates: first, my brain is fuzzy from the toxins and these blog posts might not be super well-written. I’ve finally decided it’s fine and I’m going to blog anyway. But that’s mostly why I haven’t written in a while: I write stuff and reread it and it’s jumbled and rambly and riddled with typos. Healthy people sometimes joke that they’re spacy all the time too, and while it is often funny, I generally encourage everyone to stop saying that to sick people/pregnant women/people on medications that cause these effects. The difference is what’s normal for you: I don’t feel like myself when I look at my phone and realize my text is missing three operative words or genuinely can’t remember something Nico told me just a day earlier. It’s not my worst side effect, but it’s pretty annoying. But thanks to some encouraging friends, I’m back at writing.
More importantly, treatment is working. The chemo is doing its job and we found out that it will put me into full remission by the end of this 6-month chemo course/9-month overall treatment—I’ve been very receptive to the immunotherapy and the chemotherapy, and so far (knock on wood because I’m sure the cancer is listening, plotting how to knock us all down a peg. Don’t worry cancer, I know you’re still in charge here) I seem to be a solid clinical trial participant. We are incredibly relieved. I won’t have to do radiation or a stem cell transplant, the two additional options that were on the table. The radiation was a greater possibility, and I’ve heard that whether you get it for Hodgkin’s can depend on your cancer center; a person I know in my clinical trial got her first opinion at another large cancer center, and they told her that basically anyone with Hodgkin’s gets radiation there. I should add that I don’t think there’s anything wrong with this. Radiation saves lives and if my doctor told me I needed it, I would absolutely have done it, so please don’t send me articles or messages about how you one time read an article on Facebook about it having bad effects. I, too, have the internet! While apparently Northwestern is not as radiation-heavy, it was still a possibility depending on how treatment went. In response to my repeated questions about whether I can end chemo early (the other person I know from the trial ended two months earlier than me and I went through a phase in which I was convinced I could too), Dr. K explained the numbers behind my plan: someone of my age with Hodgkin’s has about a 30% chance of recurrence (she has thrown around 40% before but we seem to be lower these days, which is v exciting) for a classical presentation of the disease. Since we didn’t catch this until my tumor was so large, I’m in a higher risk range, something like 36%. Before the end of chemo, my scans will technically be “consistent with someone in remission,” and for some people that might be enough to end. But we need get as far into the mass as possible, both to physically get rid of the structure and to hit the cancer as hard as we can to close that risk gap. The mass itself will become benign but may never fully disappear, and lymphoma (like many cancers) likes to hang out and restart based on any lingering, not always detectable cells. Essentially the choice was more chemo or adding radiation to my treatment—and the only reason she could even make that choice was that chemo has been so effective. After that talk, I finally stopped badgering her about my treatment plan (though she was incredibly patient with my persistent questions), and I settled in for the duration. I’m glad it’s working, and know I am incredibly lucky to be this responsive.
But I still have three months to go, and it’s been a rough few weeks. We’re now definitely in the phase where the cumulative impact of the drugs makes things harder—as of last week, my nerve pain (in my hips, knees, up and down my legs, in my chest) and chest inflammation are back most of the time, and I’m sick basically through Friday of chemo weeks. The weekend after chemo, my body seems to have a rebound effect where I feel pretty good for two days, and then I come back down the following week to a steadier fatigue/nerve pain/etc state. Sometimes I overdo it on the rebound days (because it is thrilling to feel a little normal even if I can feel the fatigue underneath) and then it takes me a long time to recover—when my cousins visited, I thought I felt almost normal on Saturday and Sunday, but was so worn out after that I could barely get out of bed for a day and a half. I spent our wedding anniversary laying on the couch without enough energy to even change out of my pajamas, which was depressing but also fitting for this strange year two of marriage. Still, other than one midnight ER visit, it’s been fairly uneventful—and that ER visit went fine; my calf was swollen and tender so we had to check for clots, but it turns out that a vein in my left leg is naturally twice the size of one in my right leg so it swells more in the heat. Fun things you learn about your body when you get all kinds of scans and tests, I guess?
Even with my symptoms intensifying, I’m enjoying this particular off-week. Someone told me when I got sick that things like cancer bring out people’s essential selves—generous people become more generous, self-involved people remain or become more self-involved. This is not a perfect rule; sometimes generous people have shit going on and really can’t do what they’d like to do—but in the case of my week, it’s very true. A friend’s parents (who have never even met me!) were generous enough to let me use their beautiful house on Lake Michigan for a weekend, and in the course of discussing logistics they wound up offering it to us as much as we wanted for about two and a half weeks. I kept asking if they were sure and they kept saying yes, yes, come and go as you please, you’ll love it! So here I am, in a large, lovely home with a well-stocked kitchen and giant screen porch. It happened to fall during a visit from my close friends from home (who are in the middle of a stressful cross-country move and are spending their “vacation” week hanging out with their sick friend who can’t go anywhere, because have I mentioned that my friends are the best?), so I basically got an accidental, unplanned joint vacation with one of my all-time favorite couples. Can you imagine getting to spend a week at a lake house with your oldest friends without sending a single email to plan it? Because through the magic of our friends’ generosity, that’s what I got right in the middle of chemo when I most needed it.
Until I woke up here for the first time, I didn’t fully realize how much constantly being in my apartment was taking its toll. After I counted that it’s been six months since I started treatment and was put on all these precautions, it seems obvious that I needed a break from those four rooms. I was going a little crazy, and it’s a huge mental break to be out here. I do have to miss time here because I go back home to do chemo…but right now, that doesn’t feel like it matters so much. We watch movies, take walks, they cook delicious meals, we all get a lot of rest in the quiet surroundings, and I’ll go home this weekend galvanized for more months at home. So this is a PSA: be generous when you can! People need it.
Finally: what’s next on the blog? I’m not teasing this or rolling this out like a lifestyle blogger (“This week we’re learning how to make one-bowl, sugar-free, gluten-free, dairy-free brownies that taste just like regular ones!”), but thought my next posts might need some context. My diagnosis experience was, for lack of a more imaginative word, crazy. I realized when my cousins visited that only the small number of people who I’ve relayed the long story to in person actually know what happened. So my next few posts will be explaining how we got here, both to share and because I wanted to write things down before chemo and life started to dull the details. It’s going to be broken into several posts because it is frankly a long story. It takes me a while to write each piece and no one actually wants to read a 5-page post at once anyway. So hopefully part 1 is coming tomorrow. In the meantime, here’s a photo from Fanny’s camp counselors—she seems to be luxuriating in her life in a carpeted high-rise with doting caretakers, but we miss that tiny weirdo.