Bone marrow transplant.
I’d don’t know what I expected, but a small, red Playmate cooler wasn’t it.
The logistics of getting that small red bag of stem cells to me and then unceremoniously plop the non-descript party cooler on a small tray table next to my bed set a “get a load of this” mood we didn’t expect. Months of DNA swabs, informative binders, tense uncertainty, rounds of preparatory chemo, and stacks of waivers. The tricky cold shipping from Europe and storage in super secret cold-storage facilities. The emotional buildup of the transplant, from preparing for the long hospital stay to preparing for this to be the last train on the tracks to a cure. Shit got heavy in there. Even my eyes were heavy from the pre-med Benedryl, from the strange pressure of how best to mark such a monumental occasion. Thank you, red Playmate cooler - you really took the edge off.
The bag of cells is smaller than you’d expect, only taking about 20 minutes from the time it’s hung to complete the transplant. Somewhere between a light red and pink, the cells themselves were visible through the tubing, tiny floating debris sparkling when they caught the light just right. Once it was hung, the tone became more serious. We hadn’t made a plan for this part. Knowing what this tiny bag of cells stands for - the generosity of others, my last shot at a cure, the mind-blowing innovations of science and technology - reverence felt necessary.
Evan came and sat on the bed next to me, one hand on my leg and another holding my hand. I turned on a Spotify playlist, a random mix of songs I’d been adding to since February’s relapse. It opened up with Get Better by Alt J, a sweet/sad song perfectly matched for our moment. Only his tear-filled eyes were visible behind his mask, I joined Evan in the moment's tenderness and tranquility. Thankfully, the nurse Tara, who was required to remain in the room with us for the entire transplant, stayed still and quiet. We did as well, not speaking a word the whole 20 minutes, just silent recognition as song after song played us through.
In the picture we took to commemorate the moment, I am swollen and sick, my face doing what it does during chemo and retaining all the liquids. Looking at it brought me back to how this is only the beginning, how the transplant is the easy part. Ahead of us, we have a long recovery filled with a flavor of uncertainty we’ve not faced up to this point. Over the coming weeks and months, as I work to accept this new and foreign immune system, the relationship with my body is more critical than ever. I’ll be watching for signs of Graft Vs. Host Disease (GvHD) a common condition following a donor (allogenic) bone marrow transplant. The first big milestone will be leaving the hospital, which will likely happen in 2-3 weeks once there are signs that my immune system is building itself back on its own and I’m out of the neutrophilic, high-risk-of-infection danger zone.
Physically, I feel unafraid and well taken care of. The University of Iowa has an excellent team that I’ll be seeing multiple days a week as more and more milestones are crossed over the coming months. What will feel new is the time spent without new treatments. As brutal as it felt, there was also real comfort in doing chemotherapy every few weeks. At least it felt like I was doing something to keep any illness at bay. As chemo wrapped up a few days ago, I’m now entering a phase of observation; a time of watching to discern what could be a symptom of GvHD and what could be the dreaded something more.
Maybe it will be none of it. The dream is I only get stronger, that slowly time will pass, and I’ll begin to feel more at peace with cure, with a life without treatment and 3x/week hospital visits and the cadence of illness we’ve been living in for the past 18 months. I dream in milestones. 100-days cancer-free. A full week without needing blood products. That one-year mark when I can learn who my donor is, when I would have lived all 4-seasons in a healthy body.
As I write this today, reaching a place where I won’t be afraid cancer is back may as well be a million years away. As I write this today, my head is lying back on the sofa in my room as the sun hits my forehead and the shadows of the tree outside dance across my face. It’s a beautiful fall day outside, one that I know Evan is enjoying with a bike ride, that Mom is happily cooking her food for the week in her lovely kitchen, and I don’t have cancer, and the transplant is over, and there is hope for us all.
I don’t have to live every day without fear for a million years. I don’t even have to go a full day without it. Aww, but now I can be in the sunshine, and all is well. I’m bursting with gratitude for this strange mix of circumstances, for the donor and the transplant and the view of a tree and the swollen face and the giggles I get thinking of the Playmate cooler (which I’m totally buying as a memento when I break out of this joint).
Do you know what else happened today? I took a 20-minute shower. Me. The water conservation queen of America. I also had a craving for peanut butter that was so strong I thought I might scream if I didn’t get some in my belly. Sure, I can observe for signs of c-bag…but what about signs that I’m picking up traits from my 22-year-old donor? Maybe he likes to take 20-minute showers and is obsessed with peanut butter. Those are the observations that really matter. Stay tuned. An X-box and Hot Pockets might be in my future.
