day +23: being a baby during a pandemic

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.