One Year

It’s my one-year transplant birthday! On February 14^th 2020, I was admitted to UC Davis to start chemo. The day before, I had brunch with my grandparents and went to a Mardi Gras-themed party at the Crocker art museum. I had my transplant on 2/21/20 and had absolutely zero immune system in an isolation room a few floors above one of California’s first community-transmission COVID cases. When I was discharged from the hospital in mid-March, my sister’s high school classes were cancelled, and the shelves of our local grocery store were bare. That brunch with my grandparents was the last time I ate inside a restaurant. I remember now that everyone at the Mardi-Gras mixer was wearing feathery masks. I was at a point in treatment where I was strong enough to not require an N95 in public, so I decisively didn’t wear anything covering my face.

It was crazy timing really. When I think about it, I get a little dizzy. Luckily, during my hospital stay I was able to have family and friends visit me, my treatment never got delayed or disrupted, and my boyfriend stayed with me every night. If my transplant was scheduled a few weeks later, if my donor was from outside the US, I would have had to wait, and if my donor could have donated, I would have been completely alone for the weeks-long hospitalization. I walked out of the hospital into a world hyper-focused on germs and illness. Everywhere I went, people sanitized their hands and wore masks, which is what my family and I would have been doing anyway. I was under strict medical orders to stay home, stay away from other people and their germs for at least 100 days; my friend Reily jokingly referred to this period as my “quarantine” when I told her about it in December.

Once I had the white blood cell capacity to go outside without worrying about fungal infection in my lungs, I laid on the wet, early springtime grass to read books and nap in the sun all day. I would come inside when it got dark and we would all eat dinner in front of the TV where we watched DJT give those awful daily press briefings, then Taylor and I would retire to my childhood bedroom to watch TikToks about making whipped coffee. I feel so weirdly nostalgic now for this time, even though I could barely eat anything that wasn’t liquified and taking a shower left me completely winded.

Tomorrow I get unhooked from the continuous drip of immunotherapy I’ve been connected to for the last few months. I’ve had a tube in my arm since I relapsed in September. If I add up the months, I spent the last seven connected to either an IV pole or a portable pump. The pump I have been carrying around is light, and I have very few side effects, which has allowed me to work on college courses, exercise, and even ski. The bag is light, but I still feel its weight on my shoulder, around my waist, under my seatbelt. It tugs at me at night, even in my dreams I can’t forget my Blin. I’ve developed a sort of cartwheeling motion with my arm that I do to make sure the tube doesn’t wrap around my neck while I sleep. Even during monthly breaks from the drug, I still roll over with my left arm above my head, feeling for tubing in the dark.

I go to the hospital once a week, sometimes twice, to get labs and have the bag of drugs in my fanny pack replaced. The phlebotomists ask me about my cat and my classes while they flush my PICC line. The nurses in infusion tell me where they’re going skiing this weekend and I chat with the older folks in neighboring chemo chairs. Coming to infusion is the highlight of our week, they get to talk face to face with real humans and show the nice girl in the chair next to them pictures of their grandchildren, and everyone compliments my hair. Outside of these few hours, my life is relatively normal. I clock in for zoom school, go skiing and hiking with my friends, and I even go inside the grocery store now that I’m not so neutropenic. I relish choosing from the seemingly endless options what I want to eat.

I don’t know if I’m still in remission after the incident this fall where my chimerism dropped and blasts popped up in my marrow, but everything looks good from the peripheral bloodwork. I won’t have official biopsy results until springtime, right before I graduate from college. I’m on the list to get the vaccine soon, but my doctors still aren’t sure how much immunity I’ll retain from it because my cells are potentially still immature. I have no idea what I’m going to do when I graduate, which I’m fine with. I’m graduating with a degree in Community Health and Human Development, basically public health. I hate to say that I feel a little disenchanted with public health after this year. It’s honestly hilarious that before I got sick, I thought I wanted to get my MPH and become a government health official. Maybe I still will. Our county health officer has a picket of protest signs outside his house and receives death threats in the newspaper’s comment section. I took a community organizing class last semester, during a one-on-one session with one of the instructors, I was told the thing I should prepare for most is for people to hate me. They must go over that in grad school.

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I watched a video where this self-help guru said there’s realistically no need to plan beyond the next 90 days. You can work towards long-term goals, sure, but who are you to say what your life will be like more than a few months into the future? Personally, I like 100 days. One Hundred. It’s a nice round number, and right now at least, one day is the only unit of time I’m concerning myself with.

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