I have multiple myeloma, but I don’t have an expiration date

The entrance to my local supermarket becomes a danger zone at this time of year. The danger is deceptive: girls dressed in brown and green, selling seriously addictive products.

Yes, it’s Girl Scout Cookies season in my part of the U.S. If you don’t think Girl Scout Cookies are addictive, then you’ve never had a Thin Mint!

Lent is also underway. I am a practicing Episcopalian, and I’ve always found it ironic that I begin my Lenten observation while being tempted by Thin Mints. Still, more than one priest has reminded me that this season is not just about deprivation. It’s about reflection, penitence, and acknowledging our mortality.

Multiple myeloma certainly hit me in the face with mine.

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The first question

There’s a stereotypical first question a person asks when diagnosed with cancer: “How long do I have?”

My first question was, “What?”

I’ve written before about hearing the words “multiple myeloma” from my first oncologist in 2019, before he sent me to the hospital for treatment. I didn’t ask anything more; I was too relieved I didn’t have pancreatic cancer, which took my father so quickly that it is the cancer I fear the most.

But on the short drive to the hospital, it sank in that I still had a form of cancer I knew nothing about — including the life expectancy. How long did I have?

So I started searching.

Searching for answers

The first bit of information I clearly recall finding had nothing to do with life expectancy. Instead, it focused on myeloma being very treatable, even in 2019, when we had far fewer options than we do today. That little bit of knowledge was a lifeline for me.

The next question I remember wasn’t mine. My brother asked, “What stage is it?”

I had no idea. The oncologist didn’t mention a stage. So I went back to the internet.

I quickly found out that myeloma is not staged the same way as other cancers. Solid tumor cancers are staged by whether they are still in the original location or have spread to other parts of the body. Myeloma staging is based on blood test results and a bone marrow biopsy. One particular combination of results puts a patient in stage 1 with the best prognosis. Another combination of results puts a patient in stage 3 with the worst prognosis. That leaves stage 2, which I call the “everyone else” stage for those who don’t meet the conditions for either stage 1 or 3.

But before you put too much weight on all of this, you need to know that a lot of myeloma doctors don’t bother with staging at all. Mine didn’t. He did give me enough information about my tests for me to understand that I am in the “everyone else” group.

He never told me how long I had, but after my stem cell transplant, he said he expected I’d get a 10-year remission, and then we’d see.

We’re not stamped with expiration dates

Over the years, I’ve learned it’s not unusual for doctors to avoid saying how long a patient might survive. Sometimes I think it’s because so many patients outlive predictions, and it’s happening more and more. Last month, I wrote about the latest data from the American Cancer Society, which showed that the relative five-year survival rate for myeloma patients was up to 62%, a 30-point increase from the mid-1990s. And even in 2019, the year I was diagnosed, some doctors were seeing patients live for 10 to 20 years.

A few years ago, I saw a social media comment saying no one has stamped our bodies with expiration dates. I remember that even during my Lenten contemplation of mortality, and remind myself that myeloma is currently a life sentence but not necessarily a death sentence.

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