On Tuesday I got my first round of chemo.

Have I mentioned that, despite knowing so many people who have had cancer, I didn’t really know what “chemo” meant before my diagnosis? (I blame living outside the U.S. when I would have watched Grey’s Anatomy for all my lack of medical information.) So, if you still haven’t googled “chemo,” here’s the short of it: Getting chemo means you go in to the hospital to an infusion unit. Nurses spend a lot of time taking your blood, checking labs, ordering the meds sent up from the pharmacy (chemo meds are a set of toxic and highly regulated liquid medicines), getting an IV in if you don’t already have a port, injecting a bunch of “pre-meds” that will maybe coax your body into not rejecting the coming chemo, waiting some more, and then, eventually, hooking you up to a drip line. In my case, one “chemo” drug dripped into my arm for an hour, a second for half an hour. It was a lot, and it was relatively easy.

Burke spent the day with me, getting me snacks, helping my extremities stay iced (to reduce side effects), and distracting me with a documentary about pet cemeteries (“Gates of Heaven” — I recommend). When we left I felt something bizarrely between relief and elation. It was such an emotional ride getting here – to the decision, to the day – that once it was over, at least there was no more second guessing. But by that night I couldn’t sleep and felt off. I think the side effects I’m experiencing so far – highs and lows of energy and mood – are mostly from the meds that are meant to prevent the worst side effects of the chemo (wrap your head around that). 

Today is Day 3, the day that doctors and people who have had the same chemo as me say is when the worst side effects kick in. It is a eery feeling — waiting for an alarming list of side effects that may or may not arrive. I also have to inject myself once a day for seven days with another medicine to offset the way the chemo decimates my white blood cell count, and take another med to prevent the bone pain that can result from the injected medicine. I’ve never swallowed and injected so many things I do not want. I feel jittery, can’t sleep, and I wonder if it’s a side effect or just anxiety about what may or may not happen.

I keep reading other people’s cancer stories and poems and art and rants. It is helpful sometimes. And also, I can’t help but compare — notice that I don’t have it has bad as many other people do. (At least so far.) I’m not minimizing my suffering or even feeling grateful for my kind of cancer. Just noticing. Some people go through a lot more. Maybe specifically with a lot less paid days off from work. I guess what I’m getting at is some kind of rant about how this is manageable for me because Burke is with me, and not only is he an amazing person and partner, but also he has a job that allows time off for family care, and so can I lean on him so, so, so much and he won’t collapse under the burden of family care and paid work… and EVERYONE deserves that. I guess that’s what I’m saying about noticing some people have it harder. 

In case your brain needs a visual reminder of how messed up our country’s policy is, I looked for a good graphic. (I’m too tired to find a good graphic on paid family care leave country by country, but it probably looks close to identical to this one, on paid parental leave.) This is from Pew Reasearch.https://www.pewresearch.org/short-reads/2019/12/16/u-s-lacks-mandated-paid-parental-leave/

Go Estonia!

Thanks for reading my loves. Thanks to all of you who are trying to expand FMLA, expand access to all kinds of care, expand the legal definitions of family and care; to all of you who are advocating to make health care free and available to everyone… and working to smash the patriarchy while we’re at it. I love you all. 🙂