Hold Both Tightly: Pre-Transplant Assessment, April 11-12, 2022

Larry and I leave early Monday morning for the pre-transplant assessment at Cleveland Clinic, a two-day whirlwind of tests and meetings to confirm my body is healthy enough for transplant, and to learn about and prepare for all it entails. This includes an EKG, echocardiogram, pulmonary function testing, chest X-ray and bloodwork, as well as meetings with Katie, the transplant coordinator, Jane, the transplant social worker, Dr. Ricci from Apheresis, who is in charge of collecting my stem cells, and Dr. Rose, the neurology fellow working with Dr. Cohen.

Dr. Rose asks me to walk as far as I can, unassisted by my cane, to document my pre-transplant EDSS, the Expanded Disability Status Scale used widely in MS. I’ve never actually done this before, and I walk almost 350 metres, toddling at an almost reasonable pace at first, and then more and more slowly until I can’t will my left leg forward anymore. A little over a year ago, I could walk more than five kilometres before my left foot would start scraping the ground, the announcement of a very subtle foot drop and hip flexor weakness. I worked so hard after my relapses to be able to walk for that long - and have worked equally hard this past year for those 350 metres too. I feel in equal parts pleased and dismayed by this.

Overall, the assessment is harder for Larry than for me, I think because as a physician I have a better idea of what to expect. But it makes everything suddenly very real. Signing a contract that promises I will have someone available to care for me 24 hours a day in Cleveland and beyond. Speaking about advanced directives, about which days I can expect which side effects from which drugs, and which days I might be too sick to get out of bed. Delving deeply into our personal lives for the team to get a sense of how my family and I might cope with this massive event and the separation that comes with it.

Even though I’ve run out of good medical options to manage the MS, this transplant is still something I am choosing; it’s difficult not to listen at all to the whisper of doubt that asks if it’s really worth putting my family through this. Through all of it, and without any guarantees on the other side. It’s difficult not to feel that on some level my decision is selfish, even though I truly believe that there is no better gift to us all than a reprieve from the quicksand of the past year. And yet, what I’ve learned is that both can be true: I can be afraid, and I can also be certain that this is my best chance. That I can hold both feelings tightly in my hands at the same time.

So I move forward, trying to keep a firm grasp on all I know to be true.