Day 12, and the depression hit with a fury. I felt bathed in hospital smells, the chemo burning out my pores, my mouth tasting of metal and dry of thirst. An unknown number of days stretched out in front of me. I couldn’t escape this sterile room. The one window to the world had a view of more buildings with more people in their rooms looking back at me. At least we were in this together. At least I’m getting out eventually. I thought of prison. Of Viktor Frankl. Of Jarvis Masters. Of our shared moments of hopelessness, of feeling like the walls are closing in around us. Us. There is always an us, and that soothes the dull ache some.

Dark days and high fevers during the first transplant (CAR-T).

The nurses know me by now. I don’t shy away from going deep quick, and neither do they. Each day we see one another is like unpausing a great movie, the small happenings in our lives updated for one another in vivid detail. Today, I’m crawling out of my skin. I want to go outside. Please, please. I just want to feel the wind on my face, to touch a tree, to take off my shoes in the grass for JUST a minute. They knew what I knew - I’m doing the work that needs doing right now, and the work of surviving is not to be taken lightly. Courtney, the nurse I’d developed the closest bond with, gave me the great gift of silence as she rubbed my back tenderly, and I wept into my hands.

I wake up to Courtney, day 13, handing me a gift bag. Inside, a tiny diffuser and six essential oils: campfire, rain, fresh cut grass, night air, ocean breeze, and dirt. “Since you can’t go outside and feel the grass, now you can at least smell it.” She filled it with water, we both chose dirt as a curiosity, and with that one act of kindness, she transformed the room and my attitude for the remaining days. Word got out that I was pining (pun intended) for the outdoors, and in another act of kindness, the PAs and physicians got together that next morning and allowed supervised outdoor time once a day. When I beam up and my life flashes before my eyes, the memory of mom and I belly laughing as she awkwardly wheelie’d me along the bumpy sidewalks, feeling like we were breaking out of jail together, will be near the top of the highlight reel.

In total, I spent 19 days in the hospital for CAR-T. This next transplant coming up in 16 days will likely be double that, and I’m determined to do things differently this time. To begin with, I’m trying to live these next few weeks outdoors as much as I can, burning my candle down to a nubbin every day. Yesterday I ran for the first time since January, moving almost 3 miles around a beautiful park near our house. On each loop around the park, I stopped to swing on the swings just for fun (I highly recommend). Today, Evan and I rode our bikes down to the river, and stopped downtown to eat cookies. I rest in the sunshine and walk out to put my bare feet in the grass whenever I have the strength. I sit on our porch and watch the wind blow through the trees, trying to absorb the feeling of it into a place within I can access when I’m behind those four sterile walls.

My bright teal cookie bag is ready to be filled.

In my indoor moments, I’m researching and stocking up. How does one simulate the outdoors? How do I fill the hours and days I have the energy to move? Below is my list of items that I’m muling up to the hospital:

The essential oil diffuser with all the outdoor scents, including these I added
A therapy light that simulates natural, outdoor lighting
An art easel for painting, coloring, etc.
A meaningful paint-by-number kit
Several gorgeous puzzles
The vision board I made by cutting out striking and meaningful images from magazines
As I always do, my totems of Buddha, Jesus, and Ganesh, along with a baker's dozen of my favorite crystals, will join the party
Stacks of books with a backup stack of books just in case.
Yoga mat
My own pillow and blankets that smell like home
Wild Lily Healing Hubby Rubby to rub on my feet before bed

The floor I’ll be staying on also has a PT room that is super secret and super awesome, set up with a treadmill and a few stationary bikes, and some light weights. I hope they will grant my request to use those machines as the loop around the ward is only .1 miles and gets old quickly.

What am I forgetting? Any suggestions/advice on building a hospital sanctuary, one that feels as outdoorsy as possible?

Above all, more important than any of the stuff I’m fortunate enough to have the means to surround myself with is that I don’t wish to be somewhere else. I can’t help but wonder how much the stress and anxiety, the wanting to get the hell outta that hospital, was a factor in the short 3-weeks of remission after the last transplant. The great gift that 19 days of inpatient gave me was knowledge of self, of how my fear shape-shifts me out of solution mode towards sadness, and how, while I give myself full permission to feel what I need to feel, the experience of living is richer when I stay in it. Stay with the fear. Stay with the discomfort and isolation that, even with all this shit around me, I am sure to feel. Stay with gratitude that I’m fortunate to have a 10/10 donor, an anonymous 22-year-old male whose blood and immune system will be mine…forever. We may even share parts of our DNA. Isn’t that wild?!

Awww, 10 years. What a dream to live that long. For now, I need to go outside and get my tootsies in that grass while I still can.

Outdoors: a simulation.

Swinging doors.

Independence.