day +156: What do we do here?

My grandmother and I agree. The two of us are pandemic experts. We putter. Organize forgotten corners, go on meandering walks, email our friends, and read books we never thought we had the time for. I’m on Sapiens, and she’s on Shogun. I gave her a Joan Didion book in June, Blue Nights. She said she liked it, but it was a little sad. Apparently Nana and Didion are both 85, and we talked for a while about what it means to be 85, how Didion seems older, but isn’t that because she smoked cigarettes, and wasn’t that fashionable for young, smart women at Berkeley way back then (they were in the same class, but I figure Didion was bigger partier). 

I often feel closer to 85 than 25, then remember I’m actually 26, not 25. I don’t remember my 26th birthday very clearly because I had a bone marrow transplant about a month earlier. I was too nauseous to enjoy my cake. Somehow I managed to mount and ride my bike almost six miles that day, only losing balance once. I was crawling at a snail’s pace, gasping for breath, and merely tipped over. My oncologist wasn’t too concerned about the bruise on my butt cheek, as my platelets were pretty low anyway. Maybe it’s the low platelets that make months of recovery seem like a blur. Maybe it was the undetectable hemoglobin or the anemia or the unbusyness that turned days and weeks into one perpetual afternoon. 

I used to lay in my hospital bed and envy the bounciness of the nurses who all seemed to be my same age or have a daughter my same age. “I’m 26 too!” was a common phrase for nurses, M.A.s, E.M.T.s, and even P.A.s and med students. “Cool” I would answer, hating them with every fiber for being young and healthy and successful and busy.  Before I got sick, I relished my busy-ness. Telling people I was busy was sweet, it conveyed I had prowess; could juggle multiple things at a time while standing on a ladder supported by two border collies. Check me out, I take too many credits and have ten odd jobs and two internships. Aren’t I doing The Most. 

“I used to be like that,” I would scoff at the younger undergrads in my classes who would wait until the last minute to finish projects. Now, I’m like a child in a bathtub who doesn’t want to get out, fingers and toes shriveling into prunes. I’m a body at rest. I never rush people on the phone, even if it’s a nurse trying to suss out my medical history. I tell the whole story. I used to tell the nurse who checked me into the clinic I was “fine, thanks!” The other day I answered honestly: “I threw up and my boyfriend is a little grumpy because we’re late. He’s probably tired of me throwing up and making us late”. I turn and face Taylor when he talks to me about things he’s interested in instead of trying to saute veggies or fold shirts or text someone at the same time. I breathe and listen while hiking with friends instead of trying to fill silences. A friend and I walked to the river and decided to simply sit down in our clothes, freezing water up to our belly buttons, wiggling our fingers in the rocks, splashing her dog for hours.

I feel most at peace when I give up any expectations of what a day should be like. Sunsets used to make me anxious, what did I accomplish since the sun had risen? In the hospital Taylor and I started saying “another day done and dusted!” because an Australian woman I met through an online cancer community said it to me once and I loved the proper-yet-cowboy vibe of the phrase. Done and Dusted! (biiiiiitch!!!) I also like it because the only thing that is really ever Done and Dusted is a single day. Sickness? likely not done and dusted. Pandemic? Not too done and hardly dusted.  I’ve started to take comfort during uncertainty that I will never live specific days ever again. 

I look in the mirror and run my fingers through my short hair, growing in unevenly and curly. I have deep cavities under my eyes, my eyelashes haven’t grown back yet, and if I don’t wear enough sunscreen, I break out in a bumpy rash. I think I look sicker than I did when I was bald, but it is hard to tell. I have a sick girl vibe. Maybe it’s because my clothes are too big or because I prefer Taylor’s clothes lately. I got a “thanks, man!” the other day. I can’t tell if I’m losing weight. I don’t have a scale so I eat a lot of ice cream and peanut butter just in case. 

I think about my cells a lot. I wonder how they’re doing. I’m a chimera now, made up of genetically mixed material. Still only 70% new DNA, and 30% Kristen, which isn’t bad but isn’t really that good either. I call my donor’s immune system Craig. I look at my limbs and send Craig good luck. I try not to let the new cells feel disappointed that they’re not at 100% yet. You’ll get there, Craig. 

I got a zit in my armpit and it was really bothering me. Partially because nobody likes a zit in their armpit, but the beginnings of a zit feel a lot like a swollen lymph node and I was afraid my body was trying to remind me that it knows how to make cancerous cells and it’s not too afraid to do it again. I wonder if my cells know I think about them. I hope they find homeostasis or peace or balance or harmony or something. They need a break too. 

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Although I am stiff in the morning and need to take calcium because I have porous bones from steroid use, my days look a lot like the day of a six year old. I move when I want to, eat when I’m hungry, rest when I’m tired. Taylor caught me lost in thought at breakfast and said “you look like you’re thinking about something important.” 

I was just thinking about how much I like eggs.

I got to Zoom with my old Montessori class. In an exciting display, I showed them some of my colored paper clips and my hair and listened to their “questions” which are really more like statements about camping, fishing, and make-believe stories regarding “the virus”. I’ll always remember an especially lovable three-year-old boy at Montessori who used to repeat facts in a half awake state. Once I lifted him up from a nap and with his sweaty head resting on my shoulder, he whispered in perfect diction: “you know, early settlers used to call them buffalo, but they’re really bison”. T and I went to the Missouri Headwaters state park last Saturday to bike through the tall grass by the river, little placards reminding us of the “progress” that “early settlers” had made. 

I have an odd perspective on the pandemic, obviously. The “number of days since” a bone marrow transplant is a hot topic amongst BMT survivors. We don’t survive in years or even months. According to a journal article I read, 62% of BMT patients survived at least 365 days, and of those surviving 365 days, 89% survived at least another 365 days. Of the patients who survived 6 years post-BMT, 98.5% survived at least another year.” I really might be too dumb to decode what that might mean for me. Someone in an online group proudly proclaimed they were at Day 1000. 

I didn’t really celebrate my Day 100 because I was high as fuck after getting my hip drilled into during a bone marrow biopsy and napped the whole day. I always tell the nurses during a procedure that I’d like to listen to “Lo-Fi Study Beats” which is a playlist on Spotify, and sometimes they get it right, but sometimes they just play Drake or Kanye West. Drake proudly claims in “Sicko Mode” he took just half a Xanax, and was out “like a light” for *thirteen hours* on a flight! He should try some of the cocktails they give cancer patients. Unfortunately Lo-Fi Study Beats makes me nauseous now. 

Recently I’ve seen people on social media proclaim: “today is 112 days since quarantine” or “120 days since I’ve done x”. Today is day 156 since my transplant, which obviously coincides with how long I’ve been “quarantining”. I haven’t been to a grocery store since January. I haven’t touched anyone but Taylor, my parents, and medical professionals since January. When I reunite with friends, we stand six feet apart and sometimes cry facing each other, describing the glorious hugs we would give if we could. 

Most days, I read, pet the horses, listen to music, exercise a little bit, and draw or make art for a while. Lately it’s been playing with polymer clay and creating weird construction paper envelopes to send to people (let me know if you want one). We’ve been going on an after dinner bike ride through the neighborhood every night (to get the wiggles out before bed). My goal is to ride 100 miles in one week by the end of August, and I did just register for a full load of classes, my course-load is comically relevant: Epidemiology, Family Law & Policy, Health Disparities. I’m also working on a website about stressed out agriculture workers. It mostly entails searching for stock photos.

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My daily expectations for myself are very low. If I manage to take my meds and eat enough food and see a cool bird or make something I like, I feel completely satisfied by the time the sun sets. 

These are some pandemic habits I want to keep.