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Did you make a New Year’s Resolution to make more art? 

Again?

Did you make less work in 2022 than you thought you might? Do you have all these creative ideas, but you just can’t make them happen?

Today I’m sharing five actionable tips to help you make more art in 2023. This is a text version of a video I made over on youtube! If you’d prefer to watch and listen, you can find that here.

1: MAKE SPACE 

Even if you’re a digital artist making work exclusively on an iPad or a tablet, you can’t make art without SPACE

Ideally you should designate a space in your home that is just for art making. Whether thats a corner of your bedroom, a desk in a hallway, or a full on art studio that you can close the door to and lock yourself inside (lucky!)

You need to have some space that you don’t have to clear off every time you have a creative idea. I recommend keeping your go-to art materials out and in eyesight.

Don’t hide away your sketchbook or paintbrushes in a drawer. Every time you walk past your desk, your colorful supplies will either inspire you to sit down and make art, or taunt you and make you feel guilty for not doing so.

This eliminates that extra step of having to get things out, especially if you have limited time and energy to make art (chronically ill artist gang). 

Get creative with how you delineate your workspace, in order to send the signal to those that you live with, maybe you put in a special set of headphones or earplugs.

2: STEAL TIME

In addition to clearing out your physical space, you also need TIME SPACE.

If you’re the type of person who thrives on routines, this is relatively easy: just add art making into your existing routine. I recommend habit stacking, where you add a new habit on top of an existing one.

If you have a cup of coffee or tea every morning, why not bust out your sketchbook and do some drawing while you’re at it.

If you’re like me, however, and your schedule changes every single day, and you thrive off of chaos and novelty, you might have to find different ways to squeeze in that art making time.

It’s taken me a long time to realize this, and I’m not joking- I make my best work when I’m procrastinating. That’s right, I’m giving you permission to put things off in order to make more silly drawings.

If you wait until every last thing on your to-do list is checked off (dishes, laundry, schoolwork) you’ll probably run out of time and energy before you even get the chance to sit down at your desk.

I don’t recommend putting off tasks like taking care of your pets or children, or if a housemate or family member is counting on you to get something done.

But if you’re waiting to make art until the conditions are absolutely perfect and your house is perfectly clean and organized, you’re doing yourself a disservice. 

3: CREATE A MENU

So now you a physical space, and you have time-space- NOW WHAT!

Sometimes you might find that you have so many ideas you can’t possibly make all of them happen, and other times you can’t even remember what you like to draw.

Personally I operate on a cycle of inspiration, sometimes I can’t stop thinking of ideas, and other times I’d rather have someone else tell me what to do.

So I’ve implemented a Menu. Unlike a to do list, a menu is not in order of importance, and it doesn’t really matter if you end up ticking every item off the list. Just like a menu in a restaurant, you can choose things more than once, and things can fall on or off the list (maybe even seasonally).

My menu is a combination of subject matter I know I like to draw, and specific ideas for projects I’d like to explore. Of course, you can do this however you want, whether it be a list in the front of your sketchbook or a note in an app on your phone. I keep my menus on sticky notes and put them up on the walls of my studio space. I recommend having a physical list, that way you don’t have to pick up the Distraction Rectangle.

Also remember that it’s okay to make the same thing over and over again. Many famous artists have explored a narrow range of subject matter, and each piece does not have to stand alone or be a unique masterpiece. No one is going to stop you from painting oranges or portraits every day. That’s art baby! 

The reason why these things work is because they eliminate decision making from the process. Decision making takes energy, and one might argue that art making is just a series of decisions. You can also eliminate decisions by creating boundaries or limits for your work. You can create limits within a project for your medium, subject matter, canvas size, or the time period in which you make your work. For example, you could create the boundaries that you’ll create one 5×7” watercolor painting every day, or one large painting on canvas a month, which is my personal goal for 2023.

Creativity can thrive within boundaries, but be cautious and forgiving with yourself when holding yourself to limits. In the past I have completed the 100 day project, which is where you create a piece of work every day for 100 days. I have also “failed” and given up on that project because it wasn’t suiting my needs the next year. 

4: GET INSPIRED.

As creative humans, we have input, and output. In order to increase our output, we need to have a balanced input.

If your issue is that you simply don’t know what to make, you might be uninspired or blocked.

In her book, The Artists Way, Julia Cameron suggests taking yourself out on a weekly artist date. An artist date is a weekly outing where your mission is to wine and dine your inner artist.

My favorite places to go for my artist dates are used bookstores, art supply stores, museums, parks, aviaries, anywhere I can experience new shapes, color, and textures.

Think about when you were last most inspired. Journaling and writing stream of consciousness helps me to catalogue and take note of what is inspiring me, and the more you do that process, the better you’ll get at noticing these things. Be careful though, that your’e not spending more time seeking inspiration than you are making art.

This ratio is obviously incredibly personal to every artist and every human. The internet is a great place to find inspiration, but it can also be a time suck, a distraction, and lead to destructively comparing yourself to others. Which leads me to my last tip:

5: EFF THE ALGORITHM:

The relationship that artists have with social media is probably it’s own separate post, but let me just say that tailoring your entire artistic practice to please the computer robots is a surefire recipe for burnout.

Not every sketchbook session needs to be a reel, and not every painting needs to see the light of day. Sometimes art is just for the human experience of making something with your hands.

In this day of ultra short video and punchy trending audio, it can be easy to forget that art making can often be really frustrating, messy, and time consuming.

Don’t get me wrong, sharing your work on social media can be really motivating, inspiring, and even lead to a sense of community and career success.

But its really easy to get hung up on numbers, and even let low engagement trick you into thinking your work isn’t worth making in the first place.

Let me know if you think I missed anything, or if you enjoyed this! Thanks for reading and Happy New Year!

Hi there! It’s been a while since I’ve made a post here, but I would like to utilize this blog more, especially as social media continues to be a weird, unpredictable place to share art!

This June, my parents invited Taylor and I to come along on a trip to Italy. I had never been outside of North America before, and seeing all of the renaissance architecture and art had been on my bucket list since I took art history in college. Post cancer & pandemic, I don’t think I’m alone in feeling like there’s no time like the present when it comes to crossing things off that ever growing list.

Before the trip, I envisioned spending every still moment drawing and painting, preferably plein-air masterpieces that would live in my handmade-specifically-for-the-trip-sketchbook. But between jet lag, walking miles every day to see the sights, and being with my parents and partner who don’t draw or paint, I didn’t have as much time as I thought I might to sit in plazas and paint beautiful marble churches.

Something I *did* have time for was the 4″x5″ pocket notebook that I picked up on impulse in the Vienna airport. The thin-papered gridded notebook lived alongside a Tombow Fundensuke brush pen in the little leather bag I picked up in a shop in Lucca. Those two simple tools served me well for quick observational sketches when I had a few minutes to sit in churches and museums, or when we were waiting for trains, rental cars, or food to arrive. You can see a few choice scans below!

This sketchbook practice birthed one of my major takeaways from the trip, I don’t need complicated tools or a lot of time to make sketches that inspire larger work, or even stand on their own. The drawings I made will forever remind me of the sounds, smells, and sights of Tuscany.

Here you’ll find the first installment of a monthly dispatch of recent activities and inspirations.

It’s officially the end of March, Spring is in full swing, and I’m so ready for a change in season and location: most notably our move from Montana to Salt Lake City! Our little studio was home for four years, and we had collected a lot of ~stuff~ in that time. After finishing radiation in mid-March, I flew from California to Bozeman, then we drove to Utah, me in the car with Norah, and Taylor following close behind with all of our belongings in a U-Haul.

Moving took up a lot of mental and physical energy, so the small amount of art I made this month was very simple, escapist and inspired by springtime.

As a little moving gift, I ordered myself a pair of rollerskates! I had been wanting to learn since early quarantine, when skating videos took over my TikTok FYP, but living at the end of a dirt road in Montana didn’t seem like the most conducive learning environment. Now, I can just roll out the door if I want to practice; the park near our new apartment has a paved loop that is perfect for getting my wobbly little legs under me. Listening to music while skating in the spring sunshine has been a much needed break from unpacking.

Now, onto some favorite things from March. Here’s what I’ve been watching, reading, listening to, and some artists that are inspiring me!

Watched:

Gerhard Richter: Painting: This documentary was so soothing and interesting, with slow real time shots of Richter’s intuitive process interspersed with interviews, it was the perfect watch at the end of a long day of unpacking. We watched it on Kanopy, the public library’s streaming service.

I also finally watched Encanto & Turning Red, which were as visually stunning and emotionally compelling as Disney/Pixar gets.

I’ve also been loving Tiffany Weng‘s content on Youtube. Tiffany is a RISD student who chronicles her class projects, she often makes books and polymer clay objects, both things I love.

Read: 

I finally got my hands on a copy of Austin Kleon’s Show Your Work, and read the entire thing in an afternoon. Kleon’s approach is so refreshing, stating that you can’t be discovered if you can’t be found. I especially loved the section on being part of a creative community, or “Scenius”.  

Listened to:

Lisa Congdon‘s podcast got me through some boring packing sessions, and I feel like I’m hanging out with friends when I listen to Sounds like a Cult. Also included are some albums on repeat, the Oscar Peterson Trio always cheers me up, Fetch the Bolt Cutters is an angsty emotional masterpiece, and the lofi environmental sounds of Resavoir have been keeping me company while I paint.

Artists:

Monika Forsberg is a Swedish artist who has been inspiring me lately. You can probably see the textile-inspired shapes from my recent sketchbook above in this piece. Her work can be found at https://www.walkyland.com/ 

Ariel Lee is an artist and illustrator living in Southern California. Her gouache and Flashe landscapes feel so warm and home-y to me in a very Californian way. Her website is https://leeariel.com/

I’ve been really into the lineless textures of gouache lately, something both of these artists do so well.

Speaking of which, my art-making space in our new place is almost all set up, my paints are calling me, and I must go!

Thank you for reading as always, and happy April!

– Kristen

Well, Hi.

The more time that passes between posts, the more I feel like I have to explain, which leaves a lot less space for unique observations or insightful insights or nice words about nice things. Please bear with me while we get caught up.

In my last post, published almost exactly a year ago, I reflected on the one-year anniversary of my bone marrow transplant.

My whole cancer experience seemed like such an Event at the beginning. Of course, there was the big Event of being diagnosed, walking through a doorway and never being the same again. At least for me, having cancer has been less like a car accident or an avalanche, and more like a slow moving brush fire. So scary and so boring, not unlike the pandemic. Often the heroes and innovators and fire fighters get things under control and the rain comes, but awareness of changing seasons keeps us vigilantly watching the embers.

After a summer of what felt like endless wildfire in Montana, my leukemia came back during a months-long upper respiratory infection. In October, I was airlifted out of Bozeman in the middle of the night for the second time, with my kidneys in near-failure. By November, I was back in California getting better treatment near family. Chemo was injected into my spine on a Friday. On Saturday, a dark, blurry spot appeared in my left eye. By Sunday I was stubbornly walking through an art supply store nearly blind. My best friend took me to the ER the next morning, and I didn’t leave the hospital for two weeks. Just before Christmas 2021, I was discharged from the bone marrow transplant unit after undergoing an experimental Car-T-cell transplant. At the time of writing, I am ten sessions into twelve daily sessions of radiation targeted at my eyes.

I’m in remission and can see fine now, though the last few months have been a blur. 

It’s somehow mid-March. I’ll turn 28 in a few weeks, just after Taylor, Norah, and I plan to move from Bozeman to Salt Lake City. The hope is that we can exist somewhere affordable and close to the outdoors, where I can walk or drive to the hospital instead of being loaded onto a helicopter.

Moving will definitely be bittersweet, I’ve spent ten years in Montana and have been so many different versions of myself there. But I’m ready for a new beginning, and so excited to explore Utah and be a little bit closer to the desert, the southwest, and a real airport(!).

I’m also excited to have enough room in our new apartment to set up a more legit studio space, as I’ve been making art out of a desk in the closet of my childhood bedroom, and the closet of our tiny chicken coop before that.

Once I get settled in, I’m looking forward to getting some prints and a collection of artwork I’ve been working on all winter available to purchase. I have a lot of exciting ideas that I just haven’t been able to execute because of… you know, see above.

If you’ve been following this blog because you’re my friend interested in Cancer Updates, that’s cool and I’m sure there will be plenty of that sprinkled in going forward. For now, I’m planning on posting a blog/newsletter style update each month with storytelling, art, and notes from my life.

Thank you for reading. I know there’s a lot going on in the world right now. I hope you’re hanging tight through it all.

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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• 

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. 

I’ve officially been home for a week. I don’t really count the day we got home (Saturday the 7th, day +15) because we didn’t get home until late, and both Taylor and I had a restless night full of phantom IV pole beeping and medical trauma nightmares. I kept waking up thinking people were trying to put tubes in my mouth, choking on my own spit. It’s crazy how after sleeping in two hour increments in a loud negative pressure room with all sorts of different monitor noises, a silent night in a regular bedroom can feel deafening.

The day I was sent home, it was on a very tentative basis. Although I had engrafted on day +11, I was still not really eating and barely able to take my pills on day +15. A viral panel had been done and it was found that I had Rhinovirus, also known as the common cold. Because I was laying down so much, my lungs were starting to sound like they were filled with fluid. A nurse practitioner was concerned that, although I was doing well in other regards, I might be developing pneumonia. Taylor and I sat over our “dinner” the night we got home (I had the broth from a ramen noodle packet and he had a bowl of cheez-its and a tumbler of whiskey) utterly exhausted, afraid of being readmitted the next day, feeling like we should be wrapped up in space blankets like refugees.

I suppose I should give some sort of timeline since my last post, especially since, while researching and reading about other people’s BMT experiences, I was very curious about what each day might have in store. 

Day +7: the day after my last post, I started an IV “pain control pump”. Basically an IV filled with Dilaudid (an opioid) that had a little remote control that I could push to administer a small amount of the drug. I needed this to be comfortable as my throat and mouth were almost unbearably painful. I couldn’t drink anything but the tiniest sip of water.

Day +8: the team upped my dose on the pain pump. I slept for 20 hours. 

Day +9: I was given a mucous sucker, like what the dentist has to suck up all of your spit. Except mine was hooked up to my bed and made a very loud and gross noise that annoyed Taylor so much, but was amazing for me. 

Day +10: easily the worst day, I began to engraft (my white blood cells went from basically undetectable to detectable) I had a fever, said some weird stuff in my sleep, had to have blood cultures taken in the middle of the night, and just felt really out of it. 

Day +11: I started to engraft! A new oncologist who loves nordic skiing came to say that I could basically go home whenever I met their requirements of being able to swallow pills and not needing any transfusions, and things should start looking up. I was tired but stoked. 

Day +12: Started to feel a little better, but started to develop some GI issues. A nurse reminded me that my insides were essentially sunburnt from radiation, so I shouldn’t feel too bad about spitting up and shitting my pants (TMI? Sorry.)

Day +13: Rhinovirus symptoms started. I felt really sick on top of being… really sick. 

Day +14: I was able to keep down all of my pills and not shit myself. Nice! I wrote in my journal: “really good day”. So that’s where the bar is for a really good day- in case you were wondering.

Day +15: Our cool nordic skiing doctor came in the morning to congratulate me on being discharged! Only one other patient had ever been discharged so early, and he was on the same clinical trial as me. (Another less in touch doc tried to explain that this particular patient was similar to me because he liked backcountry snowmobiling, but he didn’t quite have a grasp on what that meant so he said something like “this other guy was so badass, he drove his snowmobile to the top of mountains and snowboarded down. I still don’t get how he got the sled back, though”).

A few hours later, my doc returned with a nurse practitioner to have a debate with me about the pneumonia-like sounds they were hearing in my lungs. The doc wanted to send me home because people tend to recover better at home, but the NP was afraid of me going home and then being immediately readmitted potentially in the ICU or another ward of the hospital where my delicate immune system precautions might not be adhered to. At the time, all I wanted in the entire world was to go home, so I did what people have been telling me to do and advocated for myself. I did what I do best and went on a teary-eyed rant. “The reason why there’s fluid in my lungs is because I’m trapped in this tiny room contained to my bed because I’m hooked up to fluids and there’s nowhere for my IV pole to go. I’m only getting sicker being here.”  

In the end, the team decided that if I was able to sit up and walk around all day, really “push it”, and not spike a fever, I could go home. So I optimistically called my parents, we packed everything up from my room (quite a feat), and started loading the car. By the afternoon, the four of us were silently gathered in my empty room, staring out the window with anticipation, watching the first rainfall in a month darken the neighborhood. Gradually, the storm started to clear, and a giant, vibrant rainbow appeared. The sky got darker and the rainbow only got brighter as tears filled my eyes. I was exhausted. I just wanted to go home. In my mind, I couldn’t start healing until I got out. Eventually a nurse came in to take my temperature, which read as normal, and as we were picking up the last of our things to leave, a shriveled but hopeful party balloon floated past the window, in front of the massive rainbow, and I burst into tears.

Part of leaving the hospital was the notorious “bell ceremony” which I actually have some conflicting feelings about (it seems unfair to have a public “I’m done with treatment forever!” moment in earshot of other patients, for many of whom treatment will last forever), but I did it and we all cried. My mom tried to take a video and ended up with one blurry photo which is actually perfect because I might be tempted to share a video of myself crying and ringing a bell and in retrospect I’m not sure that moment was really for public consumption. We got on the elevator. I insisted on walking and not being wheeled out to the car, but I felt incredibly delicate. There was a sensation amongst us of bringing a baby out into the world for the first time. Or maybe an ancient, crumbling sarcophagus. I think I might be something in between. On our way down from the 8th floor, a man tried to get on the elevator with us. My dad, eyes full of tears behind his sunglasses told the man, “nope!”. Not really understanding, the man waffled back and forth. “Nope! Sorry. You don’t want to get on with us!”. Taylor pushed the close door button with his elbow and we all waved.

We drove home. I admired the fact that the world had bloomed and turned green while we were away. Our yard was all broken branches and dry, dead trees when we left. I was amazed to see a row of daffodils in our newly verdant backyard. The first few days after a long hospital stay are really weird. Part of me was convinced I had a fever and needed to be readmitted. Part of me wanted to rip out my central line and declare myself healed, maybe run off to the woods and never seek medical care again. Mostly, I felt like a russian nesting doll. The outside layers are a girl who has (had?) cancer. A girl who can barely walk because she’s so weak. A girl with the common cold and no immune system. A girl who has dark spots on her skin and sunburned insides from radiation. A girl who only has half of her armpit hair because the rest of it rubbed off. Layers and layers nested inside one another of all of the things wrong with me, the things I need healed. Deep down in the center, the impenetrable doll, hard as a rock, hidden underneath everything else, is a tiny pebble of anger, fear, confusion, and trauma. Undoubtedly she will be the hardest to heal. I hope I can reach her someday. 

This last week has been really quiet for me and my family. Amidst coronavirus news and fears, we have been staying inside except to go to my clinic visits twice a week. I take a short walk everyday either in the backyard or through the neighborhood. I’m taking spontaneous three-hour naps. I’m doing Yoga With Adrienne videos and oftentimes just straight up laying face down during half of the video. I’m eating more food and staying awake longer every day. Everyone on the outpatient side is amazed with how good I look. “You do not look like you just had a bone marrow transplant” is the sentence I keep getting from providers. I look in the mirror, and I do look good. The steroid puffiness in my face is going down, I have lost a few pounds, but I almost look like myself with no hair. I don’t feel like myself. I feel like an astronaut pulled from the wreckage of her little parachute pod, unable to walk, on a new planet. I feel like an infant, tired and fussy and bald. I feel like a 90 year old woman, nodding off during Elen with my elbows on my TV tray of mashed potatoes. Actually, I sort of feel like I did right before I was diagnosed with leukemia, exhausted and unfocused (not surprising considering my blood counts are still very low).

Wow, this was really long. Thanks for reading. The gist: I’m tired but getting better. I’m scared of getting coronavirus, but I’m doing all that I can to stay clean and away from people. I’m really excited for the day that Taylor and I get to go back to Bozeman, we ride our bikes to the Nova Cafe, and I get a big plate of eggs benedict before we meet up with friends at the public library. For now, N95 masks and naps and cardboard food it is. Here’s to healing.

When we checked into my isolation BMT room on February 14th, Taylor and I got to work hanging Christmas lights, pictures of friends, and a balloon banner. During the process, a nurse kindly hung up a color coded calendar on the inside of my door with the 21st highlighted as Transplant Day and spaces each day for staff to write my blood counts. If you know me, you’ll know that color coded calendars are My Thing. I love my calendar. I pester the staff to write down my counts, and every day I change the whiteboard to reflect what day of the process we are. Today is day +6. Tomorrow marks two weeks that we’ve been here.  

Last week, while my doctor was visiting during daily rounds, he made a sweeping motion towards today and tomorrow’s zone on the calendar and said, “I call this The Doldrums”. He even used a fake scary voice, which is not usually His Thing as a serious researcher/oncologist.

So far, The Doldrums have been just about what they sound like; a listless, uncomfortable period where it seems like I’m drifting more than sailing, sinking more than healing. Right now, the inside of my mouth feels like the aftermath of taking a reckless bite of a scalding hot pizza. Burned Pizza Mouth. Food tastes like cardboard when I can be convinced to try and eat. My tongue has been described as “scalloped” and there are a few scabby mouth sores on the inside of my mouth. Swallowing my spit and water feels pretty similar to swallowing a rogue unchewed tortilla chip. Swallowing my gross mucousy spit makes me pretty nauseous. Oh, and I have menstrual cramps for some reason. (More TMI- all of my pubic hair came out in the shower last night. The rest of my hair is hanging on inexplicably.) The bottom tier of pain meds available is a small dose of OxyContin, so I’ve pretty much been in an Oxy-induced half-nap the last twenty four hours.

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 My white blood cells are at an undetectable level, and I’ve needed potassium transfusions every night the past few nights. My platelets will continue to drop before things start to get better, and I’m told it’s more likely than not that I will need a platelet transfusion here soon. Regardless, I actually don’t feel that bad. If this is the extent of the Doldrums, I would be a very happy camper. A happy, bored camper. 

I don’t want to jinx anything, but if there were going to be massive complications with my transplant, they likely would have started already. Also, I’m told that another patient who was on the same clinical trial engrafted and went home on day +12, which is insanely early. According to my Nurse Practitioner, this person had a good 40 years on me, which gives me some hope that I won’t be trapped here for the full six weeks they told us to expect on the longer end. My goal is to not need a feeding tube because that may set me back a little bit, so choke down my pills I will. 

Chemo and radiation weren’t nearly as bad as I was expecting them to be. The chemo during the initial induction phase was a lot harder on my body than the cytoxan I received for two days on the 15th and 16th. I did have one day where I felt really sick, threw up a few times, and I had the posture of a scared animal- my shoulders wouldn’t relax down from near my ears. Radiation was more annoying than anything else. I had to be carted from the main hospital to the cancer center across the street nine times. The only thing is, they can’t just push you across the street in a wheelchair, you have to be transported via ambulance. I had nine appointments, so I had eighteen 0.2 mile-long ambulance rides last week. Eighteen. That’ll be a fun bill to receive.

During my eighteen ambulance rides I had to make small talk with the EMTs. On the last day, I was so annoyed and over it (it was also 6am, in my defense) that when asked what I did for work I rudely snapped, “I’m disabled, obviously”. Technically the truth but I really didn’t have to do it to him like that.

Radiation itself consisted of me half standing with a bicycle seat between my legs, holding on to arm supports, with a “one-size-fits-all” harness wrapped around my crotch and torso while a laser was pointed at me in ten minute increments. I didn’t feel anything, but I did have to hold very still. Lead blocks were placed on a velcro board to protect my lungs and were lined up with some paint marker on my chest that I could not wash off. The hardest part was just feeling pretty un-human during the whole process. Turns out, radiology techs can be notorious for moving your body around like you’re a literal hunk of meat. Somewhat related, Taylor and I tried to watch HBO’s Chernobyl while all of this was going on and that was a Mistake. Bad bad bad idea.

The transplant itself was incredibly uneventful. I didn’t even take a picture of the bag of cells. I was premedicated with benadryl and ativan, it was 8pm when the first bag of cells got here, and I slept through the second bag. Because I’m participating in a clinical trial, I had to have my vitals taken every thirty minutes for four hours after the last bag, so I was awoken until like 2 in the morning by my nurse that night. She felt bad, but it was for science so I wasn’t that annoyed.  

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Mentally, I can’t tell if I should feel like I’m out of the woods. I’ve decided that I’m either at the edge of a clearing, looking into a deep, dark forest, or somewhere in the forest, barely able to see the suggestion of a meadow in the distance. Either way, the meadow will come eventually, and that’s really the biggest thing keeping me going. That and the luxury of eating a runny egg once I get off immunosuppressants. And going outside. That’ll be nice.

My window has a view of a hospital parking lot and a neighborhood with lots of trees. The street I can see is a popular spot for hospital employees to take a smoke break, and homeless people are frequently pushing their carts down the sidewalk. I catch myself looking at the cart-pushing people with uncomfortable envy. Their heads bob under shadows of trees, they kick garbage into the street, they yell at birds– they’re out there living.

Cancer patients are strongly advised against Googling. WebMD is your enemy. I understand why, without basic scientific literacy, the information on the internet is incredibly overwhelming and can be seriously scary.

“Five-year survival rate” (So what happens after five years? Can I expect to live to 31?)

“Poor outcomes” (k, we talking death here or… ?)

“Secondary cancers” (Having cancer makes you more susceptible to… cancer? Great.)

“Treg and Tcon Haplo Allo MUD SCT for GVHD prevention” (Is this even English?)

The double edged sword is that the internet diagnosed my cancer, and gave me the impetus to seek medical help. I had no idea that the vague symptoms I was experiencing could be something serious, and was dismissive of my body, thinking that my fatigue and weariness could only be a personal failing. The nurse practitioner who felt my lymph nodes the day I was diagnosed laughed with me when I told her I googled my symptoms and the internet told me I had leukemia. “Never google anything,” she said lightheartedly, her hands around my neck, “WebMD always says it’s cancer.” (She later called me and apologized. I thanked her for saving my life). On a cancer forum I was reading recently, someone had the username: WebMD_was_right.

When I was first handed a thick binder full of bone marrow transplant information, I was under the impression that transplants had two outcomes: either you live or you don’t. I was optimistic: everyone involved in my care told me I was doing great, I was strong, young, healthy, positive, and had a great support system. I imagined that I would get the transplant, feel shitty for a little bit, then get on with my normal life.

A few weeks later, during my first meeting with my transplant doctor, I was shot down from my optimistic high horse. My doctor laid out the risks, the main concern being Graft-Versus-Host Disease.

GVHD is basically inflammation, and occurs when the donated cells attack the host’s cells and takes form as an acute or a chronic issue. Some people die from an acute GVHD attack on their organs. Some BMT recipients struggle with GVHD symptoms for the rest of their lives, with a chronic rash, joint pain, cataracts, gastro-intestinal issues, and on and on. The way GVHD is controlled is by immune suppressing drugs and steroids. Immunosuppressants tell your new immune system to chill out and stop attacking itself, but they also sorta suck. Some people are on them for the rest of their lives and live in isolation, any little bug or infection can lead to serious complications. Immune suppressed people are discouraged from travelling, being in crowds, eating out, and exerting themselves (hey, what’s up bucket list). Then there’s the steroids: personally I beef with prednisone for swelling my face into a perfect circle and stirring up a relentless hunger. Long-term steroid use can also lead to unhealthy weight gain, diabetes, and something called Avascular Necrosis, where bone tissue breaks up due to lack of blood flow. Many people with chronic GVHD treated with steroids like prednisone need total hip, knee, and shoulder replacements and can be disabled for life.

Contrast all of these side effects with the alternative: dying from a leukemia relapse, and a little rash or a bad hip doesn’t sound all that bad. However, I understand now that there are more than two outcomes, more of a spectrum ranging from good quality of life to really really poor. Being on immunosuppressants and unable to walk or see for the rest of my life doesn’t seem like a bright, shiny alternative to dying. And hopefully, after all is said and done, I have quite a few more years left to live.

Back in November, I received a happy text from my younger brother, Andrew. The transplant center had called him and explained that he was a 10/10 match and would be an ideal transplant donor. Although this isn’t quite as rare and magical as some people have thought (it’s about a 25% chance that a sibling is a complete match) we were ecstatic. In late December, after undergoing a litany of tests, it was revealed that Andrew would not be the best match due to some other health issues. (He’s fine, but that’s his story to tell). Luckily, I have multiple 10/10 matched donors from the international bone marrow registry and one of them agreed to donate. While who your donor is doesn’t seem to have an impact on the effectiveness of curing your cancer, research does suggest that an unrelated donor carries a larger risk of developing GVHD.

There is a possible alternative, my doctor explained. I could join a clinical trial. Scientists are learning to toy with the T-cells given during transplant, “regulating” them in a process that sounds really complicated and might not make much sense unless you have a firm grasp on cell biology. You can google it if you’re curious (I have, and I still don’t quite understand how it works). This new type of transplant could possibly eliminate the potential of GVHD. It also isn’t exactly proven.

At first, this seemed terrifying. Throughout treatment, I was mostly told what to do: “this is the protocol, the regimine, we’ve been doing this for years.” They gave me pamphlets with little calendars, flowcharts, algorithms. Now, I could make a choice: take a risk on something unproven, or potentially live my life chronically sick.

I turned to my friend Google: reading research papers and scientific articles I barely understand, but also reading the stories of those who struggle with post-transplant complications. Many people regret their transplant, are immobilized by GVHD symptoms, and feel that the complications often outweigh the rewards. Some people are doing just fine, have a little itchy patch on their elbow or whatever that reminds them that they survived. I’m not sure I would be aware of how debilitating GVHD can be unless I would have taken the time to do my own research.

So, I opted for the clinical trial. They only make the cells twice a month, during a specialized process that I don’t quite understand (sensing a theme here?). But, I got in, and will get my brand new immune system on February 14th, 2020. It seems significant somehow that it will take place on a holiday about love, though I’m not sure Taylor will be too stoked on my idea of sending my anonymous donor heart shaped valentines candies for the rest of my life.

Here’s a list of what will happen next:

• Sometime this week, I’ll be admitted to the hospital for two or three days to get hooked up to the 24/7 immunotherapy drug Blinatumomab. Last time, I didn’t experience anything too shitty besides some flu-like body aches and the general discomfort of having to be connected to a tube in your arm all the time. The Blin is usually administered in 30 day cycles, but they will cut it short this time just before I go in for transplant.
• I will have another bone marrow biopsy (my 4th one), not for any medical reason, just to give the researchers a sample (you’re fucking welcome, science)
• The week before Valentine’s day, I will be admitted to the transplant ward. I will receive a chemotherapy cocktail and total body irradiation every day for 5 days. The chemo is specially reserved for transplant patients, because it destroys your immune system irreparably. Lucky me.
• During this time, I will have my double-lumen PICC line pulled out of my arm and a triple-lumen Hickman line placed in my chest. More lumens, more fun.
• On February 14th, I will have my “re-birthday”. Apparently the actual transplant will only take an hour or so, and is no different that receiving a big bag of red blood cells. Hopefully, someone will bring me cake.
• After the transplant, we have to wait until the donor’s cells “engraft”, or find a home in my bone marrow. Once this happens, my blood counts will be monitored until I’m producing enough white blood cells to fight a teeny-tiny infection, then I will get to go home. The average patient spends 4-6 weeks in isolation.
• For 100 days afterwards, I will have twice weekly labs done to see how my new immune system is doing, and the transplant team will monitor me for complications. I won’t be able to return home to Montana until after the 100 days are over in late May.
• During this recovery period, I’ll essentially be in isolation. I won’t be allowed to leave my house without a mask on, eat fresh vegetables, use the vacuum, be around infants, touch any dirt, and so on.
• My blood type will change to that of the donors, I will essentially have the immune system of a newborn baby, and I will have to be re-vaccinated eventually. (I swear to God, if I get measles before I can get the vaccine because some essential-oil touting Karen thinks little Billy will get autism….)

Here’s a list of what might happen:

• I might get really bad mouth sores. The chemo and radiation wreak havoc on your mucous membranes and fast-generating cells like the ones in your mouth and gastrointestinal tract. Most people experience this during transplant, and the solution is copious amounts of fentanyl. I’ve never had mouth sores from chemo before, but I’m told there’s no way to predict or prevent them.
• The radiation might give me a new, exciting type of leukemia or even another cancer.
• I might relapse. About 50% of BMT patients relapse. Like I’ve said before, we try not to get hung up on statistics, but my age and the fact that I’m going into transplant with a negative MRD (No detectable cancer cells in my marrow) protect me a little bit.
• I might still get GVHD, about 15% of people with a T-cell regulated graft still get the disease (there I go with statistics again).
• I might get a really bad infection and have to have tubes put in my throat and my belly cut open and then maybe a parasite will crawl into my eyes and I’ll go blind and die.

It’s really not worth being too worried about what might happen, although I’ll be the first to admit the scary “maybe” thoughts do creep in from time to time. Usually at 3am when I’m trying to sleep while having a 25-year-old-in-menopause hot flash. I’m making a pact with myself to stop Googling, though. Like today. No more research papers I barely understand until I re-enroll in college courses. Cross your fingers for me that will happen sooner than later, please.

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P.S.- if you go to http://bethematch.org and click the big button that says “JOIN”, they’ll send you a mouth swab, you send it back, and you might get to save someone’s life. If you can’t or don’t want to donate marrow, go to redcrossblood.org to find somewhere to donate blood or platelets. Either of these would be a really sweet valentine’s gift to me.

“Young patients always want to be sedated,” the nurse told Taylor. 

I could hear their muffled voices through the thin hospital walls. They were talking about me. In retrospect, I think the nurse was just trying to express a pattern, something she had seen in her years of inpatient oncology work. What I heard, though, was judgement. “Young patients always want to be sedated.” She seemed annoyed, inconvenienced by my inability to just stick it out. The older patients are tougher than this. They don’t throw fits, they deal with their pain and suffering with the wisdom of age or something. Regardless of whether that was her point, I was pissed. 

 At 25, I was easily the youngest person on the ward. Six weeks earlier, I had gone to my university’s health clinic in Bozeman, Montana to have someone look at my bleeding gums and swollen lymph nodes. I was promptly sent to the emergency room, where a stern, stoic oncologist told me that I was having a “cancer emergency”. Five hours later, I was flown to the University of Utah’s Huntsman Cancer Institute where a bone marrow aspiration showed that abnormal blasts had crowded out my immune cells. 95% of my bone marrow was compromised by cancer: Acute Lymphoblastic Leukemia. I don’t think I fully grasped this at the time, but I now realize that without treatment, I would have had days to live. Ripped from our lives in the middle of the night on a Wednesday, my boyfriend Taylor and I were delivered a diagnosis on Thursday, and a four-week round of inpatient Chemotherapy started bright and early Friday morning. 

Leukemia is a disease that typically affects young children, the graph spikes at around four years old, with another peak later in life. Twenty-five years is basically the bottom of a shallow curve when it comes to contracting this already quite rare disease. We’re really good at treating Leukemia in children, with about a 90% cure rate for kids under 15. “Adults” don’t do so hot, about 40% live for five years after diagnosis. Doctors and nurses encouraged us not to give these statistics much weight, mostly because treatment has changed a lot in the last five years, and the five year survivability data is at least five years old. Say that five times fast.

I was also told that I was special (finally!). Though I am a “young adult”, my numbers are all tangled up with everyone else’s- ancient people, people on dialysis, people with diabetes and heart disease, people with no functioning organs, people with no legs who live in a cave and eat spiders, and so on.

A few weeks before a kind, birdlike doctor perched on my hospital bed and told me all of these math problems, I was routinely showing up late to my 8:00 am statistics class. I was waking up later and later each day, drenched in sweat, with dark circles under my eyes and strange bruises all over my legs, thinking that I was just burnt out or sleep deprived or depressed or some combination. The professor would show a slideshow that might as well have been hieroglyphs, my eyes glazing over as I traced my fingers over the swollen lymph nodes in my neck, chugging coffee and popping ibuprofen. I later understood that my hemoglobin was so low, not enough oxygen was getting to my brain. No wonder I felt like I was getting progressively dumber. 

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Treatment progressed in a blur, I spent 20 days in a beautiful corner room with a view of Salt Lake City. Because of my age and health, I received the more intense “pediatric regimen”- a weekly dose of peg-asparaginase, daunorubicin, and vincristine into a central line through my arm directly to my heart, and four lumbar punctures full of methotrexate and cytarabine to kill any lurking cells in my spinal fluid or brain. I was put on a high dose of prednisone, a corticosteroid that caused my face to swell into the shape of a full moon, my stomach to distend, my moods to swing dramatically, and the blood flow around my joints to weaken. My hair fell out after about 14 days, and my immune system dropped to basically zero. I wasn’t allowed outside my room without a mask, and was confined to the oncology floor. 

I watched NPR tiny desk concerts (Lizzo’s about ten times) and Portlandia and New Girl with Taylor, my mom flew out from California and we tried take-out from just about every restaurant within a ten mile radius. I laughed a lot in the way that you do when you’re sleep deprived and stuck with few other people. I told my nurses stories about how cool I used to be, vomited a few times, cried a little bit about how my life was being derailed, told my professors I would valiantly still graduate despite all of this, subsequently dropped out after trying to complete one homework assignment, and tried to read books and failed because I couldn’t comprehend a non-linear storyline (something about the toxic drugs floating around in my brain). Taylor slept on a padded bench by the window and I woke him up every time I had a bad dream about dying. We gave each other pep-talks in the bathroom. “Snap out of it, we can do this,” we would say to the other through gritted teeth. 

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My fingers went numb, my legs grew weak, and sometime around day 10, a team of people came into our room carrying a familiar, somber, news-breaking vibe. They explained that I would need a bone marrow transplant. Genetic testing had been done on my marrow samples, a weird chromosome that caused the cancer signaled to the researchers and scientists and doctors that even if I were to complete the standard two-year long cycle of chemotherapy, the Leukemia would pretty much always come back. The only way to stop my marrow from growing out of control and choking my cells is to kill every last immune cell with intense chemotherapy and total body irradiation, then to replace my shitty self-sabotaging immune system with somebody else’s. Side effects? Oh, you know, just more cancer. Sometimes the two immune systems will battle each other, leading to chronic joint pain, inflammation, blindness, etc. My fertility was a lost cause, and my prognosis was officially filed under “poor”. 

By this point, I had a splitting headache anytime I was upright, fluid in my ear caused me to be nearly deaf after a few minutes of standing, my speech and reaction times were growing slower and slower, and I wasn’t sleeping more than three or four hours at a time. I was laying on a padded bench next to the window, not bothering to sit up or even pay attention while the team of practitioners unpacked all of this news and fielded my mom’s and Taylor’s questions. They both cried. I don’t remember asking questions or even saying anything. I didn’t give a fuck. 

A few weeks later, after we decided to sublet our apartment in Bozeman, give our new kitten back to the animal shelter, leave Salt Lake, and move in with my parents in California, I was admitted to UC Davis for a session of a drug called blinatumomab. The Blin is designed to specifically target residual leukemia cells, is less harsh than chemotherapy, would get me ready for transplant, and all I would have to do was be connected to an IV pump full of it 24/7 for four weeks. Don’t worry! It’s in a fanny pack, and fanny packs are cool again! (I was told this by nurses and doctors over and over, to the point where I thought maybe people had been trained to say this. Is this Big Fanny Pack’s puppetry?) Oh, and an easy 9 day hospital stay while they ramped up the dose to monitor for neurologic symptoms was necessary. 

This is when the nurse said the thing about young people begging to be put to sleep. I believe my exact words were: “give me Xanax or get me the fuck out of here”. Yikes. I was coming down from what amounted to basically a steroid-fueled temper tantrum, after a nurse gave me a monstrous IV dose of Decadron (a corticosteroid that personally made me red and blotchy and feel like the Hulk) and told me that I would be moved from my tiny hospital room to a shared room for the remainder of the stay. It was the week of Thanksgiving, a holiday where I was fed cold turkey and a piece of pumpkin pie that tasted exactly like a pumpkin pie scented candle. My new roommate was an eldery woman with lung cancer. I never saw her face, but it was clear that she wasn’t exactly thriving. The door needed to remain open so that the nurses could hear her. She peed on the floor, coughed productively all night, and during her assessments told the nurse that she believed it was 1990. True crime shows blared from her television non-stop. Taylor tried to sleep and work on his laptop from a camping pad on the floor. I listened to music in headphones and stared meanly at passerby in the hallway while I cried. I felt profoundly too young to be there. If I were younger, I would have been in a children’s hospital, playing with legos and going to music therapy. Instead, when I asked to talk to a psychologist or counsellor, a social worker told me: “I think that’s a thing from the movies”. 

The next day, my insurance denied the blinatumomab pre-approval for outpatient. I was not allowed to leave until it was approved. A social worker explained that usually people receiving this drug were on Medicare (read: old people), and private insurance didn’t understand the logistics of the inpatient/outpatient infusion situation. I was enraged. I felt bored, trapped, and tortured. My mind was becoming more clear, I was feeling the effects of the chemotherapy fade, and reality set in. I have a deadly cancer and I’m being toyed with by the American healthcare system. The only way to escape my room was to pace the U-shaped hallway. I did hundreds of laps, looking into other patients’ rooms, searching, I guess, for someone like me. The hallway dead-ends in a set of heavy metal doors, creating a hermetic seal for the delicate immune systems housed in the bone marrow transplant unit on the other side. I would get to the end of the hallway, look into the quarantine section, searching for something, seeing nothing, then slowly turn around. I asked a nurse if she had ever worked on the BMT side. She explained that the patients on that side were “too sick” and it scared her and made her sad. 

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Eventually, we were permitted to leave, I carried around a fanny pack full of expensive cancer drugs for two weeks, and only occasionally woke up drenched in sweat with IV tubing wrapped around my neck. It’s now January, I’m supposed to have my bone marrow transplant sometime soon, I just don’t know when.

In this period of waiting, I’ve been searching for something. I scoured the internet for success stories and read just about every blog post, facebook comment, and reddit thread that exists about bone marrow transplants and the people who receive them. Some people die. Many have tales of permanent chronic illness and woe. Some people are doing just fine. Some people go back to running marathons and triathlons and go to cancer camp where you learn to surf and eventually grow out their pixie cuts and graduate from college and join the ranks of normal people. I think I was searching for someone I can relate to, someone that has gone through exactly everything I have and survived. Some guidelines to follow, a plan maybe. I didn’t find anyone. Unfortunately and fortunately, this is my story to tell. 

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I just finished my first book in months, a novel called My Year of Rest and Relaxation by Ottessa Moshfegh. The story is about a woman who wants to sleep for a year. She thinks that if she manages to sedate herself long enough, she will emerge on the other side, healed. In the end of the book, the narrator describes watching a woman on TV leap out of the north building of the burning twin towers. “I am overcome with awe,” she says, “her blouse untucked, hair flailing, like a dive into a summer lake. There she is, a human being, diving into the unknown. And she is wide awake.”