Inspirational Stories

I was diagnosed with chronic myelomonocytic leukemia (CMML) in February 2023. I was shocked, never having heard of this disease, and having always considered myself a healthy person.

At my annual physical in January 2023, I told my PCP that I seemed to be getting colds more often and they tended to linger.

My PCP ordered a CBC. When she got the results, she said they didn't seem quite right and ordered another blood draw. She then called me and told me to see a hematologist oncologist. My brother-in-law is a physician at the Brigham in Boston and arranged an appointment for me at Dana Farber.

I am no stranger to Dana Farber, having been diagnosed with stage 3 breast cancer in 2012. After surgery, chemo, and radiation, I was fine (although chemo and radiation treatment can be associated with a CMML diagnosis).

At my appointment, I had another blood draw and a bone marrow biopsy. My doctor told me I had CMML 1 and explained what that meant and my treatment options. She also arranged for me to meet virtually with a stem cell transplant doctor.

I learned that a stem cell transplant is the only cure for CMML, but that it is a grueling process. I also learned that the disease would get worse, but there was no predicting when or how. Given my age, 74, I was not too old for a stem cell transplant. but I was approaching the outer limit.

This put me in a quandary: I didn't feel sick so why should I put myself through the ordeal and uncertainty of a painful stem cell transplant? On the other hand, if I waited until things got worse, I might be too old or too sick to have a successful stem cell transplant.

I belong to a Facebook group called CMML Friends. I read people's stories on it every day. There are heartbreaking stories and uplifting, hopeful stories. But everyone who writes demonstrates support and love to everyone else in this community of people afflicted with a little-known and little-understood disease - and so much courage.

One frequent topic of conversation is quality of life now and in the future and how those considerations affect our decisions about treatment.

I just had my second bone marrow biopsy, and the results show that my disease is stable for now. I will be meeting with my oncologist soon to discuss my treatment plan. For now, it is watch and wait.

I want to live a long life and, especially, see my grandchildren grow. But I also want to be active and live life fully. What does that mean when I have been diagnosed with CMML? Knowing that I have this disease hovers over me like a dark cloud, always there. Mostly I ignore it and choose to look at the sun - the shining sun of my children, grandchildren, family, and the world around me.