Share Your MDS Story

In late 2020, my primary care doctor noticed that my platelet counts were a little under normal. At a following check-up, they decreased again. He sent be to a hematologist-oncologist who sent me for various tests, ultimately resulting in a bone marrow biopsy.

I swore to myself that I wouldn't read the results when the hit my chart, but I couldn't help myself. It said I had myelodysplastic syndrome. I thought that can't be too bad, it's just a "syndrome". Sure enough, I went out for my reference desk shift (I'm a librarian) and started my research and broke down crying. Yup, it's cancer. My oncologist referred me to a Center of Excellence for another opinion, which greatly helped. At this appointment in 2021 I was told I was very-low risk, and just needed to watch and wait. It was after this appointment that I became aware of the MDS-Foundation. I reached out to them, and they sent a wonderful package of materials explaining more about what MDS is, what the terms are, treatments, etc...

Because my primary MDS issue was low platelets, I sadly gave up cycling - the last thing I wanted to do was fall and deal with road rash with a low platelet count. Things continued for several years as watch and wait, until in 2024 my oncologist was concerned that my white and red counts were also now dropping. Another bone marrow biopsy revealed that I was one of the unlucky 1/3 whose MDS transitioned to AML. 

2024 was rough. After the AML diagnosis, it was a quick consult with a Center of Excellence doctor at Karmanos in Detroit, and then a month later I was in the hospital beginning conditioning chemo in preparation for a bone marrow transplant. Luckily, they were able to find an overseas donor who was a perfect match for me, and in August 2024 I had my transplant. I've had some downs since then, but more upside, and so far a little over a year on my blood counts are good and are 100% donor cells. I am thankful for all of the organizations that I reached out to for more information about this disease, including the MDS Foundation, for providing fact-based information about treatments, and encouragement along the way. While things are ok currently, I feel every day that I'm still walking on egg shells, and continually follow what's going on with this disease through MDS Foundation posts, mailings, and activism.