Six Months In: January 1st, 2023

The process of recovering after stem cell transplant presents its own unique challenges; in some ways it feels more difficult than the transplant itself. The timelines are longer and often nebulous, with endpoints that are weeks or months away, or sometimes nonexistent. You begin to resume your roles as a parent, partner, daughter, friend - and perhaps you even return to work - despite feeling not quite yourself yet, whatever that is. Whoever that will be when you have completed this work before you.

I’m a quiet part of a couple of HSCT Facebook groups, and I notice that some people remain active members for years - more than ten years sometimes - after their transplant. I assume this is because it becomes a piece of their identity that remains important, or perhaps people stay on in these groups to provide mentorship to others. Sometimes I wonder whether it’s because their work of recovering isn’t yet over. What defines the end point of recovery, anyway?

With six months of physio and functional training under my belt, my legs work at least as well as they did right before transplant. My balance is better too: not normal, but definitely improved beyond what I thought could ever be again. These gains have been steady when measured over weeks or months, even though the day-to-day variability I experience still feels a little unsettling. And although the rate of improvement is slowing, I believe I will continue to see progress, maybe out to a year, maybe even beyond that. Perhaps more important to my sense of self is the improvement in my cognition: having emerged from the underneath the bludgeoning effects of cumulative relapses and massive chemotherapy, my mind feels sharper. I am less easily distracted, make less mistakes, have a longer attention span, and - important to my ego - can do difficult Sudoku puzzles again.

There are frustrations, too, and these seem to fall into two categories: those MS symptoms that I wish would improve after transplant, and those that have worsened. The former are smaller disappointments, manifested only because of the gains I’ve experienced in other domains. I’d like to have less MS-related neuropathic pain: the burning/freezing feeling in my feet that keeps me awake at night, the squeezing sensation in my left limbs that has me slipping off my left sock and shoe on all possible occasions like a toddler. I still experience some mild spasticity in my left leg, and it would be nice not to wake up stiff-legged every morning, and to sleep through the night without waking to stretch my hip flexor, or reposition my left leg and ankle, or take an extra dose of Baclofen. But none of these are surprises, and none are as frustrating as fatigue.

Fatigue is an unreasonable dictator that does not bend to my will - so very different than feeling tired. No amount of rest or sleep will recharge me: I simply have less hours in the day to do. While fatigue is not entirely new to me, it now directs my days with a new insistence. I have to plan them carefully, weaving both necessary and chosen activities around the need for regular rest for both my brain and body. Occasionally I can borrow extra time with legally-prescribed stimulant medications, but I always seem to need extra rest on the other side, so I save this cheat for special occasions.

In Cleveland last month, the hematology team told me it could take up to a year for the component of fatigue that is transplant-related to subside. I am terribly impatient, yet the understanding that there might yet be some improvement was reassuring. I’m still not able to return to work, not able to consistently gather together the hours I need to run my clinics. Will I still be able to practice medicine? Virtually? In person? In a different clinical capacity other than returning to the hospital? And how important is that clinical work to my identity, really? In moments of self-doubt, I wonder if I will still be a physician if the outcome is medical retirement…but these thoughts are fleeting. I know I will carve out a space as a physician mentor and advocate, regardless of what else is possible. Or chosen.

Where is the endpoint in my recovery? Perhaps one doesn’t exist. For all the talk about going back - returning to work, returning to good health - the only way is forward. And forward is a vector whose path I cannot entirely direct. We don't get to choose all that happens to us in this life.

Never could I have imagined the enormity of all that has transpired during this past year, nor the abundance of gifts this year has brought me. I will not squander this second chance; courage, will, and an open heart will guide me as I enter 2023.