The Gift of a Second Chance After My Stem Cell Transplant

A woman diagnosed with multiple myeloma describes her experience undergoing a stem cell transplant, including the challenges and the hope for recovery.

Two years ago, I noticed some symptoms that seemed odd. Bruising on my arms and legs that I didn’t remember getting, feeling out of breath, extreme tiredness and, oh yeah, unexplained bleeding from my ear and nose. I was 51 and the perfect primary care patient, coming in once a year and generally, other than the odd prescription request here and there, not seeing the clinician until the following year. What followed were months of tests to figure out the underlying cause. I work at the hospital and jokingly told my boss that I visited pretty much every division in our department during this course of testing (there are 10) and that I was happy to report the care was stellar. It was exhausting.

I spent my 52^nd birthday at three separate medical appointments after they confirmed my diagnosis of acquired von willebrand and stage 2 multiple myeloma. What followed was seven months of a four-drug chemotherapy regimen consisting of Darzalex (daratumumab), Revlimid (lenalidomide), Velcade (bortezomib) and dexamethasone, as well as a host of other drugs to counter their side effects. I am a big fan of my primary oncology nurse right until he injects that large needle into my stomach with chemo drugs that takes 5-10 minutes to empty. Although that paled in comparison to both the bone marrow biopsy and the stem cell harvesting that got me ready for the autologous stem cell transplant.

Getting ready for the autologous stem cell transplant felt like getting ready for the vacation you didn’t want. I have two kids, a husband, a needy Boston Terrier and a job, so there was a lot of planning on what to do in my absence. In my absence, I had an amazing community, both far and local, who rallied and showed their love and support. Best of all I got to miss all that single digit Boston weather in January because I didn’t leave the inpatient unit for 16 days. 

I celebrated my 53^rd birthday dinner with my friends by taking off the baseball cap and just wearing my new baby hair without any covering. I felt naked and vulnerable at a moment when I should have been smiling and happy. It was hard to process and explain to others. I moved on to my next phase of “maintenance chemo,” which I never knew was a thing. I’m down to a two-drug regimen of Revlimid and Darzalex. My hair has come back curly, and I’m keeping it short for now. I don’t feel like I’m the same person I was before. And I suppose I’m not. The bone marrow transplant team calls it your new birthday when you receive the baby stem cells.

After what seems like months of just trying to get through the next day, the next drug or the next procedure, I’m finally at a stage where I can look into the future. It’s a little scary. Sometimes denial is not just a river in Egypt but a nice place to be. Friends and colleagues tell me I look amazing, and my medical team said I was a rock star. They seem so sure of the success of my future. I wish I could join them. I feel unmoored, adrift in a sea of uncertainties.

The hardest thing about all of this is to realize your own mortality. Once you see it you can’t unsee it. It’s hard not to fall apart when I think of my kids and if I will be present for their major life milestones. I am realizing that there is no right way to deal with this. Every journey will be different. For now, I’m keeping my focus on the short term, one year out. I am grateful for everything I have, and so I feel like my job now is to show up, be present, accept and give love. To laugh as much as possible, and to take care of the gift that the stem cell transplant has given me.

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