Long pause between posts! Hair week turned into “is something wrong” week—spoiler: everything’s fine—so I got a little sidetracked from my hair adventures. Here’s last week’s recap.
Health stuff first: The day I got my hair cut, I started having GI symptoms that don’t really merit details here because I think we all know what that category entails? These issues aren’t a huge shock when you’re on a bunch of drugs. But I started having pretty bad stomach cramps and wound up on the phone with my girl Dr. K at 11 PM. The concern with actual pain is that it’s a sign of inflammation, which could mean that the immunotherapy drugs have turned my immune system on my organs. They worry about colitis, pancreatitis, gut, kidney, and liver inflammation. She told me that we’d need to run tests to make sure I could stay on immunotherapy; if something was wrong, I’d be pulled from the study and start chemo once they got the inflammation under control. So Thursday and Friday I had blood work and a CT with contrast and the delicious barium shake to check on stuff. Being a little sick wiped me out-the immunotherapy makes your body work so much harder, and fighting off something causes pretty intense fatigue. But we knew by late Friday that I was fine, and by Saturday/Sunday I was finally feeling better. So I went into treatment today feeling like my normal self! I celebrated by wearing heeled boots and real jeans instead of leggings and trainers. Small victories.
Family time: my niece was here! She’s almost 3, and she was a tiny adorable delight all week. We share a love of food and dancing around (she’s hilariously partial to 80s music?), so we had a great time. While I got my hair cut, she sat behind me and watched me in the mirror, continuously telling me how pretty I look and how much she likes the short hair. Highly recommend this kind of affirmation, it’s an excellent mental health booster.
Wigs: You guys they’re so expensive! We’re figuring out if insurance will cover anything, but I didn’t get to that last week. The wigs are almost bizarrely realistic (we’re not allowed to take photos, sorry!), but at $3,000 for the Cadillac wig and $2,000 for the lesser quality one, I’m not sure I want one. In terms of affordability, we could figure it out, there are just a lot of things I’d rather do with that money when this is all over (specifically go to the beach). If I needed to keep going to work instead of this happening during a weird in-between school and jobs phase of my life (and if I wasn’t incredibly lucky and privileged that Nico’s job can short term support both of us), and wanted/needed to regularly appear like my old self, that would be different. Or even if losing my hair was something I was really upset about—but oddly it’s not, even though I love my hair. For now I think it will be fine (I say all this now, I’ll let ya know in a month), so I probably won’t do a good wig unless a huge chunk is covered by insurance.
Update because this was originally misleading: This doesn’t mean I’m not getting ANY wigs! I’m exploring less expensive options and will probably get some fun ones or even pretty normal ones that just aren’t as high quality. My cousin is a professional actor and asking her people about the best ways to get some–I’m not trying to go wig-free for the next year!
Hair cut: This part was fun! I’m close friends with my hair stylist, which is pretty much ideal when you’re getting an emotionally charged haircut. Lisa has known me since right after I moved to Chicago, so we’ve kind of done our 20s growing up together over many glasses of wine and many haircuts. She is one of the most generous, kind, and funny people I know, and I am so lucky that she was the one styling! My hair is also super lucky, because she did a great job. She knows me well enough to push back when I try to do too much at once, so my hair stayed long enough to just tuck behind my ears, and then shorter in back. There was a ton of hair on the floor (photo below of just one round of it) and it affirmed my decision to cut it on my terms and not find all that in my shower or on my pillow. We might go even shorter pre-chemo, but I’m going to wait and see. Everyday I adjust a little more to not having it long, and the short hair shower is amaaazing. Men have it so easy! Now that I’ve experienced the ease of not dealing with 10 pounds of soaking wet hair, I’m like wtf long hair is the patriarchy.
Closet redo: My friend Suzanne, who was responsible for my delightful throw down of a wedding, visited this weekend—she’s an organizer extraordinaire, so I asked her to help me put away all the clothes I won’t be able to wear for a while. Particularly my good blazers/work clothes that I had all set for post-grad interviews, and all the pretty clothes I would have worn to the eight weddings happening in the next six months. I held onto a couple things for Nico and my graduations, but everything else is out of sight so I don’t have to look at them while trying to find my daily athleisure outfits. Overall, I think I’m pretty accepting of all the things I’m going to miss for the next year, but not having the daily reminder is helpful.
As always, thank you to everyone for all of your support! I get such thoughtful cards, packages, notes, emails, and visitors, and it makes a difference in my strange day-to-day. So if you’re reading and wondering if it’s weird to reach out, it’s not! I love it. I’m slow to reply, but I get back eventually.
Here are some pics–the first four are from the day I chopped the hair, and the last one is at today’s infusion.