A Second Stem Cell Transplant: Finding My Way (Again)

In a perfect world, I would have a pro wrestling announcer with a booming voice introduce me. That would go something like this:

“And now …
Coming into the waiting room…
Wearing a purple N95…
From the great state of Virginia…
The Old-Dominion diva…
Clocking in at 45 years of age…
It is none other than the double champion of AML…
Two-time transplant survivor…
Maarryyy Clarrrre!
A Suuuur-VIY-Vrrrr!
She’s been through hell more than once, keep your pity and your questions.”

I was first diagnosed in 2014. My husband and I had just bought our first condo. My daughter was four, and my career was moving up. It was summer, and I couldn't shake a cold. Then one day, I had the worst headache of my life, which brought me to urgent care.

I had acute myeloid leukemia (AML).

Everything stopped.

My family and friends surrounded me with support. Treatment was harrowing, with long hospital stays and scorched earth levels of chemo before I received my transplant.

Yet, I found so much to be grateful for, I was in awe of my anonymous stem cell donor, my nurses, and my brilliant doctors. There was also the promise that all of this would be over soon, and life would go back to normal.

And it did go back to normal.

Sort of.

Over the next three years, I went back to work, and I doubled down on therapy to process what happened. I found a community of survivors that understood, and we found creative ways to support each other.

My pride unwound when I relapsed, three years later. I was angry, scared, and not ready to die.

I found fragile solace in unexpected places. I left my job and clocked into being a full-time patient, again. I quickly fell back into a familiar routine, surrounded by nurses and staff that I knew well.

The first time around, I learned how all the messy and complicated systems of healthcare, insurance, and clinical trials work. I knew how to be a patient, and I was good at it. In other aspects of my life, it was clear I was living far outside the lines of normal. In my survivors’ group, I saw my friends’ eyes widen with fear for me and themselves.

I was the worst-case scenario.

I spent time comforting my friends who knew cancer well. It was also too much to bear for my friends and family. Some had fallen away the first time. Of those left, most were too rattled to support how they did before. Mortality loomed large for all of us. I could not escape the fear that I was a grenade about to blow up my husband and daughter’s world. I let go of the anxiety just long enough to plan my funeral. I felt a sense of control and joy, picking my favorite hymns and readings and deciding where I wanted my ashes to rest. That curious, morbid time helped me get out of my own head and push forward into the unknown.

This was supposed to be year three of being cancer-free. Which meant going from seeing my oncologist every few months to a yearly visit with the survivorship team. This was, statistically, the point where my chances of recurrence would be low. I had one visit with the survivorship team, and I appeared well in my exam. It took a few days to get the results of my blood draw, which was nerve wracking, even though I expected normal results. It was a shock to get the call that blast cells were found in my sample. The result was confirmed with a bone marrow biopsy. I was relieved to hear we caught it early. What I did not understand was that this would complicate things.

I relapsed with just 9% blast cells. It was unbelievably rare to catch it so early. The treatment protocols are designed for more advanced disease. So, at first, transplant was not part of the plan. So much had advanced medically since my first bout with AML. My treatment options were different. Over a year, I was treated with targeted therapies. Some were in clinical trial, which I tolerated. Over time, my cancer outsmarted them one by one. It was frustrating, and I knew transplant would be the last resort due to the extreme side effects and risks involved. That is, if I could even find a donor.

I had lost friends to this disease. Primarily, it was the treatment that destroyed their bodies. I knew all-too-well the risks involved and that there were no assurances. I was scared, but I trusted my team. It was not even a choice: I wasn't ready to die at 39.

I learned I had exhausted all other options. Another transplant was the only way. I felt defeated. I was tired of being my own advocate and pouring all my energy into just surviving. It felt like I was about to climb a mountain, pushing my body to see if it could take it.

I had to find my way by slowing down and taking it one step at a time, one breath at a time.

A new donor was found, and full marrow radiation was added to my pretransplant conditioning. My first transplant was difficult, but my body recovered with few long-term effects, which is why I was even a candidate for a second transplant.

My second transplant was a convoluted success. My body accepted the new stem cells, but every bodily system and organ was hit hard by treatment. The list is long: kidney damage, adrenal collapse, heart failure, neuropathy, and chronic graft versus host disease of my eyes and joints. It took years to even find the right specialist to manage my wild blood pressure swings that left me dizzy and often passed out on the floor.

I survived. Again.

Looking back, it is hard to fathom all that occurred. It has been almost four years since my second transplant, and I have healed and managed every complication with a sprawling team of specialists. My body has healed in ways I could never have predicted. My job as a patient is more part-time, most days.

Enough time has passed, and now I can see the path I carved. I hope by sharing my story, I can help others who venture into the unknown.