The Diagnosis

I’ve been wanting to write again about being diagnosed with primary plasma cell leukemia in 2015. I’ve been thinking about writing. And not writing. And feeling guilty about not writing. I kept telling myself that the first easy step to get my mind working on it would be just to google it and find a recent research article.

I thought about it again yesterday while walking in my favorite little urban park, Lorraine Cherry Nature Park Preserve. This time, I stopped in my tracks in the middle of the trail, pulled out my phone, got a data connection, and googled primary plasma cell leukemia (PPCL). I had not done that in three or four years.

My fresh motivation to write again about PPCL arose out of a recent conversation with my stem cell transplant doctor, Dr. B. I see him online every three months after my bloodwork — “just to see how things are going.”

After I was diagnosed, contrary to my habit of googling everything, I didn’t research PPCL for a few months. I had been feeling miserable. I didn’t know I was enormously anemic. It was hard to get to work, hard to think, and I was preoccupied with pain. There were probably unconscious reasons, too, why I didn’t want to research my diagnosis.

I put my attention on what my doctors told me. The first oncologist, Dr. P., met with my husband and me to tell us the news. (I liked Dr. P. a lot. I’ve been thinking about reaching out to him to let him know I’m alive and thriving.) Dr. P. didn’t answer my husband’s question about my prognosis. He equivocated with a comment about studies being too small to be predictive. That told me all I needed to know: the prognosis was Not Good.

There was a lot going on, what with tests and starting chemotherapy and discussing next steps. I did well to follow directions. I worried more about my insured status, having to come up with COBRA premiums. Soon there was a plan in place for repeated chemotherapy to wipe out my immune system and prepare for a stem cell transplant.

I finally googled PPCL a few months later. There was an article in 2015 or 2016 that summarized recent research with small cohorts. The graph showed almost no survivors five years after diagnosis.

I decided I would be the outlier, the exception. My survival would be a tiny dot on the upper right corner of the graph. I made that momentary decision early on. I also tried to stay aware that the future was uncertain.

I’ve been in complete remission since March 26, 2016, 10 days after my stem cell transplant. (One tends to remember such details.) The road has not been easy: lots and LOTS of side effects of the transplant and treatments for side effects and side effects of treatments. But I’m thriving. In February of 2022, I’m working full-time in a dream job as an editor for Johnson Space Center. I meditate, walk regularly, get lots of rest, and feel so well that I frequently complain about stupid stuff.

Dr. B. encouraged me to write about my experience with PPCL. People need hope, he said. The research is scary, but the future is open. I think the phrase is “beating the odds,” although I never bet on an outcome. I think the most significant thing I did was try to be present with everything that was happening.

As I walk through my favorite park, the view changes with every shift of light. New scents arise with the slightest breeze.

Every step is a fresh start. That’s the only way the future can be open.