Suddenly I’m 10 days out from chemo! It’s been two months since I was diagnosed, and these 9 weeks of immunotherapy have gone fast and slow all at once. Days feel really long because I’m home alone for hours at a time, but then suddenly another week has passed and I’m getting an appointment reminder for the next test. Time feels elastic in a new way that adds to the general surreal feel of this season of my life. Here’s the agenda for the next few weeks:
Every day: Anger at Trump’s immigration policies. It is becoming federal policy to separate children from their parents at the border—this goes against basic concepts of human rights and everything we know about child welfare. The policy even covers asylum-seekers, who have a legal right to enter the country. This is all traumatic and disgusting. My badass friends do immigration defense work for the groups linked, if you want to provide financial support to those fighting for immigrant families everyday: NIJC in Chicago; CDP in NYC.
Most days: Working on school stuff. Finals are due around Memorial Day, and I’m trying to finish everything before chemo starts because we don’t know how I’ll feel after. I’ve got two papers and one take-home final to finish, along with one lingering project for my field work. I’m tired and not doing my best work, but it’s still nice to have things to do. School is feeling more comforting than stressful lately, and I think I’ll be sad when it ends and another change comes in the midst of all this. I’m also trying to eat all my favorite things because chemo often affects your taste buds and everything tastes weird-fun!
May 18th: Morning PET scan. This is part of the clinical trial, and will evaluate how much work the immunotherapy got done on the tumor and general cancer. We got to see my first PET scan at my most recent appointment—the last time we tried to look at it, the computer wasn’t working. Some of you may know about my (and my sister’s) ability/curse of electronics not working around me, particularly if I’m distressed or worked up. I know a lot of people don’t believe in this, but if you’ve ever spent time with me or another energy-sensitive person on a daily basis you’ve probably seen it in action and it is real. Cancer has brought it out in a big way, and I am constantly waiting longer for tests, procedures, etc because electronics break. Like when they were administering drugs before my IVF procedure I heard someone yell from the OR (at the very fancy Northwestern fertility practice), “Keep her in there! All the computers randomly went down!” OF COURSE THEY DID. THEY SENSE ME.
Anyway, my original PET scan: there was a lot of cancer all over the top half of my body. Of course in my horcrux tumor, which was in the center of my chest and into my left lung cavity; it was about 13 cm x 6 cm, and I saw on the PET that it kind of wraps around my heart—this was more clear on the PET than the CT, and I’m glad I didn’t understand how close it was to my heart earlier. In addition to the horcrux, there were spots lit up under my arms and on my sides, and up and down my neck. I technically knew all of this, but seeing it was wild.
The new scan won’t change my course of treatment—even if it got rid of a lot, we’ll keep going with 6 months of chemo, and I’m glad I know that at the outset. I’m excited to see what the test shows, though, especially because a woman in the trial described her immunotherapy results as almost magical. So here’s hoping for some (science) magic.
May 20th: We hand off Fanny to her first volunteer temporary owners! Nico’s childhood best friend and his wife will be taking her for a while, and we are grateful and devastated to lose her all at once. It’s going to be a lot. My good friend D will be in town that weekend and I’m sure she’ll eat ice cream and help distract me, so that’s good!
May 21st: Chemo day! My mom will be in town for the week of treatment, and I’ll post more details about what chemo will look like soon. For now, I’ll be studying, eating, and spending time with the tiny dog before she goes away to camp!