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July 4, 2005…it was the eve of my twenty first birthday, and I had sprained my ankle. it didn’t seem like a very bad injury at the time so I blew it off as your standard sprained ankle. the next morning however it hurt so badly that I went into the hospital to get x-rays done. it was very swollen, and impossible to put pressure on it. I don’t know who was more bummed out, me, or my friends who wanted to take me out for the night of debauchery that is the twenty first birthday celebration. needless to say I wasn’t pleased either.

long story short, after hours at the hospital and a negative x-ray and MRI, the doctor I saw knew there was something wrong with my ankle due to how swollen it was. so he took some blood to test for gout, that was his last assumption. having been in the hospital for over 8 hours now I could not wait to get out of there with my crutches and pain killers. another hour or so had gone by and this time a different doctor came out to see me. a hematologist. he informed me that my ankle would be fine, and that there was a bigger issue at hand here. I had no blood. my dangerously low platelet count of 32 was the reason that my standard sprained ankle swelled up like a balloon. and due to a low white blood count of 1.2, he wanted to admit me to the hospital and keep me for a few days to run some tests and figure out what the deal was.

as a lovely happy birthday to me, they performed a bone marrow biopsy immediately, called my parents across the country (since I was away at school) and set me up in a room, much to my dismay. obviously I thought it was all a mistake because I had felt fine. I was very active, playing several sports at a semi competitive level. I didn’t feel that I was any more tired than the next college student that stayed up all night to study for a midterm. everything they asked, I could firmly say no. or so I thought. the results came back and they diagnosed me with hairy cell leukemia. I had no healthy marrow, it was packed tight with the leukemia cells. and my spleen was inflated. after they explained what it was and how it worked and all of that fun stuff, in looking back I guess the symptoms were there, they were just so subtle I would have never known.

everyone was devastated, I didn’t really know what to think. I was told if you want a leukemia, this is the one you want. I was also given a 2-6 month recovery time span, due to my age and good health previously. this thrilled me. in all I had a pretty positive outlook on the whole thing. I went on an 8 week cycle of pentostatin, one treatment every other Friday. it wreaked havoc on my white cells at first, dropping them to a .4 count. I was getting shots of leukine and epogen to help boost counts. I had three blood transfusions. I developed respiratory side effects and had a terrible cough that lasted 4 months long. whenever I would leave my bedroom I needed to wear a surgical mask as a preventative measure, and I went on a neutropenic diet (everything needed to be cooked).

but I was able to fight through it and go on with most of my regular activities. great friends, great faith, and mostly, the attitude of knowing you can and will be fine helped me through it all. after 3 months another bone marrow biopsy showed that I was in partial remission. I was able to attend class and even play some mild sports, even while on the final weeks of chemo. unfortunately it did take me the full 6 months rather than the two I unrealistically hoped for, then again nothing is unfortunate at all. today I am in full remission. I go in once a month right now to get my blood levels checked, because they want to make sure it does not develop again. the hardest part about being so young (youngest ever known case by the way…I will be in the journals…that’s right you can smile, it is one kind of cool thing about it all if you really have to look on the bright side) is answering the question: what is long term remission? 10 years? I am 21, 10 more years is nothing. so I foresee a long future of regular check ups since even the doctors don’t know what to expect.

however, for me, and anyone else out there that is reading this, time is on our sides. the way medicine is advancing, we will all be fine! and if you believe it, you really will. I shared my story, well the footnote version anyway, because when I needed someone to talk to, or needed information that I may have been too scared to ask, I felt great comfort in hearing stories of people that shared my experience. I realize I had it rather easy in comparison to some, but like I said, with things advancing technologically the way that they are right now, I hope all patients after me have it even easier. I hope my story was helpful and best of luck to you all!!

PJ Miles