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    Posted January 23, 2014 by
    toonafish1
    Location
    BIRMINGHAM, Michigan
    Assignment
    Assignment
    This iReport is part of an assignment:
    Living with a rare disease?

    PROTON MAN-LIVING WITH RARE BRAIN TUMOR AND EXPERIMENTAL RADIATION

     
    I am a 31 year survivor of a clival chordoma a rare brain tumor. I was first diagnosed in September of 1983. We found Mass General / Harvard Cyclotron by luck. There are about 300 of us in the United States. I was part of the original experimental group at the Harvard Cyclotron. I was given less than a year to live. In 1983 nobody had any idea what a chordoma was let alone any medical protocols. October 17, 1983 I had a transphenodial biopsy done at Mass General and then had 7000 rads of experimental proton bean radiation therapy at the Harvard Cyclotron in Cambridge.
    Over the 31 years I have terrible headaches every day, double vision, tinnitus and lately pituitary failure {hypopituitary}. I have also worked every day, play golf (not great) and have a great family. We found out that my wife was pregnant with our first child the first week of proton therapy. I want everyone to know that we do not have an expiration date just because we have a brain tumor let alone a rare tumor
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