My Platelets Drop

For more than two years I felt a certain amount of pride when they told me, "Your numbers all look stable," as if I had something to do with that.

Actually, maybe I did have something to do with it. I kept as active as possible. I cut down on alcohol, (though not to the level recommended by my first doctor). (Well, I did for about a year. Then it began creeping up. But still way lower than pre-diagnosis.)

But basically I was just lucky for a while, watching, waiting, watching, waiting, hoping it could go on for years or even decades.

It didn't. One day, expecting great results after ten or so days in the mountains, walking and taking gentle hikes, I learned that my platelets had crashed. For years they had hovered between 70 and 100. Now they were at 59.

My doctor ordered a second bone marrow biopsy. She laughed when I asked for sedation. "We can do sedation," she said. (She wouldn't have laughed it she'd been subject to my original bone marrow biopsy.)

They really could do sedation, well, but probably didn't need to. The technician used a needle and I never felt a thing. No hammer. But the tidings were not so good.

Before the needle I had a new set of labs. My platelets were now at 28.

And when the bone marrow report came out, I had a new "mutation."

Every person with CMML, or MDS for that matter, has a different combination of affected genes and blood components. For me the original genetic mutations were TET2 and SRFS3, and my affected blood parts were my red cells, my platelets, and a type of white cell called monocytes. Except for the monocytes, it was a good hand. Other genetic mutations are more dangerous. And as for the monocytes, people kept telling me not to worry. "These things go up and down," my first doctor told me.

I worried. My original diagnosis was low risk MDS, but I did some googling and realized those monocytes might mean CMML.

Still, for a time my second doctor also told me not to worry. "MDS or CMML, your numbers still say you are very low risk!"

Which was true until my platelets crashed and the new mutation revealed itself in my biopsy.

"The models still say you are low risk," my doctor told me. "But they don't account for the new mutation, or the platelets, so we have to assume your risk is higher than the models show."

About three years after my diagnosis, and five or so years into the disease, she ordered treatment and approved and recommended a bone marrow transplant.