I made several visits to different doctors, one a specialist, to try and find out why I was always so tired and feeling so unwell, every single doctor said how strange it was that I was anemic but with high iron, gave me a pill or shot of B12 and sent me on my way. A single working mother of two young, active children, there were times after kids were fed, homework done, washed up and in bed that I would literally crawl into my bed, sometimes still fully dressed from the day. I didn't even have the strength to change for sleep. I figured that I was just lazy.
It wasn't until I worked as the Executive Assistant to the Chairman of Surgery at a major area hospital, that they offered a reduction in our health insurance premium if we would be a part of a biometric testing, which just involved a blood sample and then extensive blood testing, that I finally received a diagnosis. This was in 2018, two years after my initial downhill spiral. I have myelodysplastic syndrome (also called myelodysplasia or MDS), blood cancer. As I was looking through my test results, and seeing many red flags, I received an inside call from the head of our Hematology/Oncology department telling me I needed to come right over. After meeting with the doctor and having my first of several bone marrow biopsies, I was started on various treatments, none of which seemed to help, and one making me worse.
After over a year, I was referred to Yale Smilow Cancer Center to meet with their top specialist. After clinical trials, blood transfusions, and chemo, I was able to be transferred to their Leever Cancer center closer to my home, where I met the most amazing doctor I've ever known, Dr. Victor Chang, and his wonderful group of Oncology nurses. It's been almost 8 years now (after a prognosis of 5 years for Low Risk MDS) I continue to have weekly blood draws, am on a monthly 2-3 hour infusion of Imetalstat, and still needing 4 blood transfusions a month.
I never wanted the bone marrow transplant; I just didn't want to put myself through that extremely difficult recovery, living alone at that point and unable to hire help. So I continue with the plan I'm on. I know when I need a blood transfusion, usually 2 units, when my heart pounds out of my chest, working so hard with just mild tasks. It gets very scary.
I'm not sure what my future holds, I pray something more effective for me than Imetalstat comes out, although my blood draws show good numbers except Hemoglobin and Hemocrit...I was just hoping I'd be one of the people needing fewer blood transfusions to keep going.
I am now 71 years old and doing my best to stay hopeful. I have a brand-new 22-month-old granddaughter and a sweet 8-year-old step-granddaughter, and I pray so hard that I'll be around as long as possible to watch them grow up.
Kerry
myelodysplastic syndromes (MDS)
