Helen

When I was first diagnosed with primary myelofibrosis in April of 2008, I was devastated and cried for months. I noticed my legs were tired one night at a dinner dance but that was my only symptom. My actual diagnosis came when I went for my annual physical a week later and my platelets were 100. Normal is between 140 – 400. My doctor of many years immediately sent me to a hematologist who did a bone marrow biopsy, or BMT. Living in NY, I went to Mt. Sinai to see another Hematologist, Dr. Lewis Silverman. Another BMT was done in July and I was entered into a study.

Eventually I got past the initial shock of having an incurable condition, though it remains in the back of my mind. I happened to catch a program by Randy Pauch who was dying of Pancreatic Cancer at the time. The show – titled The Last Lecture – couldn’t have come at a better time for me. Inspired, I decided to make every day the best day it could be. Unfortunately I also suffer from migraines which are devastating and no matter how good your intentions, a migraine will ruin everything.

I decided to no longer wear frumpy clothes. Instead, I’ll wear good clothes that show my figure. I’ve always worn make-up and done my hair. My husband always complains about the fancy pillows on the bed and having to take them off at night. But as long as I’m healthy I am motivated to make the room look good. I realized that at some point there will come a point I won’t be able to do it. Getting satisfaction out of small improvements in life makes each day just a little bit better.

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