“OK,” said Dr. A, as he pivoted away from the screen. “You don’t have to come back anymore.”
He said it without any great sense of ceremony. It was my annual appointment, about 4.5 years after my allogeneic bone marrow transplant for Aplastic Anemia, and I had had the usual panic leading up to the appointment.
I feel okay, but what if this fatigue is something more? If the constant colds I catch are a sign of something sinister?
My lifelong struggle with anxiety had been exacerbated by two years of disease treatment, and I was used to mounting terror leading up to my appointments. Waiting in the cold, windowless rooms, I would rock back and forth in my chair, shivering. It wasn’t until a doctor or nurse breezed in, booted up the computer and began to read off the numbers as they murmured “all good, all good,” that the knot in my stomach would loosen.
This time, I was just getting accustomed to full breaths when Dr. A said I didn’t have to return. I thought the moment would feel monumental, celebratory, complete with a brass band. But instead, it was a quiet relief.
I knew he must have been quite sure. Dr. A didn’t gamble with patients’ health. He advised strict post-transplant protocols. If he was telling me not to come back, it was because I no longer needed treatment for this particular disease. That didn’t mean I was done with illness forever; on the contrary, It’s likely that someday, like all of us, I will grapple with disease again.
But right then, at that moment, my treatment was complete. I haven’t been back.
Now, it’s been eight years since July 12, 2016, my transplant date. Now, the only visible scars that remain are on my chest, a tiny lopsided pair of marbled galaxies where, for a time, plastic tubes had transported blood and poison into my veins, and on my hips, where the bone marrow biopsy needle drilled in. These scars are hard to see even if exposed, which they rarely are. My transplant is no longer the most salient piece of information about my life, and most people who meet me will never know about it.
Yet, I find myself returning to write about it over and over, an itch that I scratch to process the experience. My partner, Eric, reads my work, and it helps him understand what I went through before we met.
“I learned more about you, and I liked what I learned,” he said, when I first showed him my writing about the transplant, weeks into our new relationship. It was important to me that he felt this way. It’s essential that my partner be willing to understand this experience, to sit with me through the difficult memories and the anxieties that still arise. When I told him about the bone marrow registry, he immediately joined, and now he has an opportunity to help others survive bone marrow disease.
For the year leading up to the transplant, I was constantly tired. First, I had undiagnosed Aplastic Anemia, which caused a fatigue so crushing that all I wanted to do was scroll endlessly through my phone, anesthetized by the words and images that glowed back at me. Then, I tried ATG therapy, which helped somewhat, but not enough to feel anywhere close to normal. By the time I was ready for transplant, I wanted so badly to be done with illness. I wanted to feel good, physically good, again.
That all happened sooner than I could have imagined. A few months after the transplant, I began to exercise again, to gain muscle, to feel energy. I still felt tired, but the amount of time I could spend outside wandering gradually increased; and in the spring after my transplant, I completed a 5K.
But long after I felt healthy, I struggled to process the experience. Every twinge or moment of fatigue felt like a bad omen, a sign that something was deeply wrong. For years after, I would cry when certain memories of the hospital, or of my families’ sadness, would bubble up. My baseline state is anxious, and the years of weekly appointments, the cycle of panic and relief, only reinforced my natural tendencies.
Writing about my experiences has helped; the memories no longer seem so tangible after I describe them on a page. Language siphons off the raw power of images and sensations, moving them from the primal, reptilian brain into the part that makes sense of it all.
And, eight years later, whole days, whole weeks, go by, when I do not think about illness at all. I find other things to be anxious about. I find other things to be joyful about.
I traveled to Scandinavia this summer with Eric and took a ferryboat through the sloping fjords, each jagged mountain edge reaching up to a shaded sky, the bright sun intermittently forcing its way through, illuminating everything: the gray seas, the painted cottages, the waterfalls. It was exactly the kind of moment I hoped I would have more of, stuck in a hospital room eight years ago, as bored and listless as I had ever felt in my life.
When I was sick, I had a wonderful mentor through the Imerman Angels program who I spoke with on the phone occasionally. He was ten years post-transplant. It seemed like an impossibly far off milestone. But now, that milestone is near for me. I remember asking him, out of desperation, “When does all the fear go away?”
“Well,” he said gently, “I’m not sure it ever fully does. I still hate going to the Doctor’s office.”
It’s true. None of it goes away. It lessens, it becomes manageable, it becomes just one piece of information that the body holds among many, as the years keep passing by.
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Read more about my experience at the Post-Transplant Chronicles: Sarah’s Substack: Post-Transplant Chronicles