Seventeen days clicked by with deliberate moments of effort from an energyless body. The most difficult were the ones where the clock read 1:45 PM and all that I’d known to do with myself was done. The pills are taken. The cognitive questions asked. The hours without nurses when Evan or Mom, my two designated visitors for those weeks, would hold up items with hope. How about cards? Coloring? A TV show? Make a list of places to travel to when you’re done with this? Ugh, the idea of being done with this. The finish lines stretch out farther than I can see. Let’s get out of this hospital. Then finish the period of daily early morning infusions at the hospital (with finding the energy to get my ass put together and to the hospital in time). Then navigate the daily problem solving of the eight weeks of full-time babysitting watch, once again with my transplant posse, Evan and Mom, while I’m otherwise isolated rebuilding my immune system. Do I have a temperature? So what CAN you eat - you’ve got to eat something. It’s time to change bandages…you know, those sort of daily problems. I’ll have a PET scan and a bone marrow biopsy in four weeks to see if this all worked or is working. Will I be done then? When do I get to lay it all down?

Those seventeen days were the most difficult of my life. They were an endless equation of how to pass time based on what I was physically capable of, and loneliness while also never being alone. Even though this whole year of c-baggery, I’ve managed to remain a busy body, my bucket filled with the energy of others like a good extrovert, remembering birthdays and carrying up groceries from the car. Time meant something and that something was doing, moving, and structuring time into little meaningful chunks with an AM/PM routine that could not be stopped. Now, a single room with windows overlooking a closed kids playground in a small but beautiful transplant unit where 17 hallway laps = 1 mile of walking. There was an exercise bike called a Nu-Step outside my door, a chair, and a table for guests or if I wanted to get out of bed to sit elsewhere. Going to the bathroom meant making sure my IV pole was untangled then unplugged, that my neph (kidney) tubes were untangled from my heart rate monitor, and doing the little dance of throwing open the heavy bathroom door to slip in before it clanked against my pole, setting off some beeping - a beeping that never really seemed to stop for more than an hour or so day or night. This whole operation really puts a damper on my preferred AM/PM routine of washing my face, brushing my teeth, and drinking coffee (on the “inside,” I’d have to order it 45 minutes ahead of time from the cafeteria) before reading books in bed with a cozy blanket and a few cats. My new AM routine became the dance of not bashing the IV pole too hard setting off the chain of events of panic peeing my last good pair of dumpy sweatpants before I had a shot at zero energy teeth brushing with the hospital provided soft-bristled brush, a way to prevent bleeding gums as to not set-off a whole different chain of events.

Well cared for as I battle fevers during the tough days

I feel compelled to stop here and acknowledge how lucky I am to have health care, to be in a safe place where a nurse will come care for me at a click of a button, where my insurance approved the $750,000 potentially life-saving transplant I was in this hospital to get that is giving me a shot at cure, at life without cancer. I’m grateful to not be in a war zone or a country without opportunities for this kind of treatment or not having to fight my insurance so this cancer doesn’t bankrupt Evan and me. I was respected and loved by every nurse, some of who will be friends for a lifetime. One sat with me in a moment of darkness where I cried about missing the smell of the outside, and then that night bought me a diffuser with outdoor smelling oils. Another doctor advocated for me to have daily outside visits those last few days to help with my morale. These healthcare workers are angels and I am privileged to get this transplant and will NEVER forget that, especially in the moments of difficulty and darkness. I get a shot. So many don’t.

On day 1 of 17, I was right away hooked up to the IV pole, the clunky heart rate monitor, and started heavy liquids and intense chemo. Almost immediately the chemo made my eyesight all wonky, making it difficult to flip through channels or read or write or really do anything in my creative caddy I so thoughtfully packed with activities to keep me busy. I was left with the deep exhaustion of chemo and my thoughts, the beginning of what became so many hours of laying in the bed in quiet, absent of the doing that I believe(d) to hold the spark of who I am.

The creativity caddy stocked with idealism and markers.

Transplant day itself was the highlight of our stay and thirty of the most beautiful minutes of my life. I was through chemo, I was going to get back those cells harvested from me just weeks earlier and then genetically modified to be cancer seeker-outers-and-killers. These cells are the ones that can cure me, that can work in my body for a decade seeking out and killing cancer. Evan was there that day for the 9-5 visiting hours and the transplant was scheduled for 11:00 AM. I made a playlist with exactly 3 songs on it:

New Sensation by INXS
Eternal Light by Free Nationals
Freedom by Jon Batiste

The cells came to the room door frozen in a cryogenic container filled with liquid nitrogen. It had to be slowly defrosted in a water bath. For you Food Network fans, think medical-grade sou vide machine. Evan pulled up a chair next to my bed, face close to mine, holding my hand with both of his as we watched with awe as this little packet of clear cells came into the room. “This will only take about 10-minute and a lot of people say they smell creamed corn when they receive them.” I felt too sacred for the playlist, so we shut it off and quietly looked at one another for the nine minutes while the cells went into me, the smell of creamed corn sweeping over me right away and probably haunting me forever. We both cried those warm tears of gratitude and of hope. A moment of sacred in the middle of the muck, the spark of hope - of a future of not being sick. This is why we’re here. It’s not for nothing. We spent the afternoon dreaming of a life of not being sick, remembering who we were, enraptured by longing again. It had been a while since we’d gone there.

Then the days passed on and the spark to create, to paint, to read, or write was dulled by the fevers (expected with CAR-T transplant) or maybe the sadness; missing people, missing the smell of the outdoors, missing the freedom to walk without a pole. The world became very small as new routines replaced what I’ve always known. I loved the time when nurses visited to give me my pills so we could chat. There was the morning ritual of moving the commode back to the bathroom and I got really good at making it through the bathroom door to brush my teeth. As the days went on and I got more exhausted, I had to sit to brush them. It was, and is, the exhaustion that finds me most often, most acutely, in treatment. The miracle in those final days before Evan drove me home through the sunkissed warm air to a bed by an open window was the exhaustion slowing everything down to its bones; slowing life down to its very bones. I woke up and meditated, scanning my body, asking for what it needed. I’d tend to my bladder, and my teeth, and make sure to look directly into my own eyes at least once. I’d read my morning messages, do my Spanish lesson on Duolingo, then lay and watch outside the window until I felt like moving. Mornings I wasn’t too sick would be one of those short laps or 10 minutes on the Nu-Walk. I’d greet the nurses, always acknowledging I was having a great morning. Pills came at 8:00 AM where I’d chat with the nurses and stretch my body. A yoga mat came up in week two for those extra special days when I could get on the floor and extend my belly out, always so cramped in bed.

Guests would arrive around 9:15 when I’d eat cereal: 15 minutes.

Every other day there was a complicated shower with a linen change that involved many people: 1 hour.

Coloring while listening to a Tara Brach or Glennon Doyle podcast: 2 hours.

Cards or Yahtzee: 1 hour.

Watching Home Town on HGTV, planning details for our new house: 1 hour.

A nap: 2 hours.

Chatting about life: 1 hour

More cereal or another snack: 15 minutes.

Small increments of time. Passing. Passing.

I would think a lot about Viktor Frankl who wrote about living in a concentration camp, and how they can take your body but not your mind. How I wasn’t going to allow my mind to wander to what wasn’t available, that I was going to, as my mom says, “stay where my arms are.” I’d think about the elderly, retired with little energy and few relationships facing a new day. I’d think of those incarcerated facing down years, a lifetime, in a cell. I feel like in some small way I understand how time doesn’t move the same for all of us, whether that be the passing of 15-minute cereal breaks or the length of a lifetime and what it means. I can’t unsee this and I’m not sure how to live with it, work with it and remain upright and upbeat.

New routine of an AM (short) walk around 3rd floor

As I write this I am +21 days from transplant and I mostly feel exhausted all day, barely able to go for short walks to the end of the block, spending my days in a chair or bed gathering strength and trying to remember to eat. I still have cereal for breakfast most days and stare out the window although I’m coloring less since my eyesight has returned and reading books are back, baby! My hair started falling out today. Dangit. I thought I’d get out of that this time around. Mostly when I’m laying looking out the window feeling down it’s my spark that is on my mind. That part of me who is the most alive. You know, the one with the intense AM/PM routines and a dozen messages going with friends at once with big dreams about bike races and ice cream shops. The part of me that finds most things easily funny and throws my head back when I laugh. The beautiful, shiny part of me with a zest for, well zest - no passions are off the table and I’ll quit one almost as soon as I start if something new catches my fancy. Tens of thousands of new ideas and places to be, friends to make. That person isn’t with us right now. She is in a season of stillness and something shifted in those seventeen days in the hospital. Quiet is essential and zest feels a million miles away. I wonder when it will come back. When I will be hungry for dinner or can help carry grocery bags up the stairs or won’t need a heated blanket on my person even in 80-degree weather. I’m seeing behind the curtain enough with time to know the hunger will return, that I will be indelibly moved by this time and I don’t get to decide how, and strength will return. While the hunger may return, I think creamed corn may be ruined for life though. RIP creamed corn.

The transplant days.

Moving in & Moving on

The violent chapters.