Share Your MDS Story

My mother's MDS diagnosis was a shock to everyone. After having her annual blood work, her doctor called her into the office for a chat. She told her MD not to say she was sick because she felt too good. He quickly responded, "You are sick." That was 16 years ago.

My mother was the strongest woman I have ever known. Nothing stopped her from getting a job done. She lived on a farm with numerous horses and huge gardens. For a time, she ran a forklift in a warehouse, then was a commercial lobster fisherwoman, and ran a horse farm with multiple gardens. On top of that she raised six children! Even during her treatments for MDS, I had to remind her that the doctor didn't want her to do certain things like mowing her lawn, which was acres of grass. I caught her happily bush hogging; she was clearing away over-grown brush and small trees. She said the doctor didn't say anything about bush hogging. That was my mother!  She was not one to sit around. However, she did need a nap in the afternoon and received occasional b-12 shots before her dx. Who wouldn't be tired after all the jobs and tasks and children. In hindsight, perhaps there was something brewing years before her MDS dx.

My mother was a caregiver. She took care of my father who had heart issues. We always thought she would be around at least another 20 years beyond my father.  She unselfishly gave of herself knowing she would have her life later to travel and such. That didn't happen. 

She took chemo pills and injections. Had blood transfusions, bone marrow bx and later was approved for a clinical trial that was a 4-hour drive from her home. The clinical trial had the desired results, and we wished she could continue on it. She went home and enjoyed 4 months of feeling much better. However, her disease progressed to AML.

I miss her terribly. It is my hope that there have been many more advances over the last 15 years since she left us. I only hope that the clinical trial she was a part of led to some of those clinical advances.

Many of the stories I read on this site were inspiring and heart wrenching. This was mine.  God bless you all.