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Submissions to "Patients' Stories" cannot be verified for their accuracy. They do not necessarily represent validated medical research. The reader should understand that these stories represent only the opinions of the authors and not the Hairy Cell Leukemia Research Foundation.
My
story starts in September of 1981. My wife and I were married in May of
that year and we were both in our late 20's and wanted to start a family as
soon as possible. She was told she would have trouble getting pregnant
because she had such an irregular menstrual cycle. We traveled through
Europe for a month for our honeymoon using the Eurail system. The Dr
said he would start her on some fertility drugs when we returned from our
honeymoon. Little did we know that all through Europe, throwing luggage
to each other traveling from train to train, that she was pregnant!! We
found out when we returned to visit the Dr after our honeymoon.
That was a beautiful, happy time for us. Then is September I realized I wasn't sleeping well. I usually sleep on on stomach and was having a lot of pain. I visited the Dr and since I'm Italian he asked if there was anyone in the family with Cooley's Anemia, which I answered no. I returned home that day to tell my wife the news and that I had to be admitted to the hospital for tests. We were all very upset. I was admitted to the hospital where I met my oncologist. He was a very glum, unpleasant man. No bedside manner. He performed a bone marrow aspiration and after a few days gave us the news: Hairy Cell Leukemia. What the heck is that?? We were floored. My spleen was enlarged. I visited the Dr every month for CBC, platelets were getting lower as my spleen enlarged. After about a year of this I decided to go to Sloan Kettering hospital in New York for a second opinion. After a few more bone marrows (they are the worst) I was diagnosed with Acute Lymphocitic Leukemia and was scheduled for a splenectomy. These were some of our darkest days. We couldn't even enjoy the fact that my wife and I were expecting such a joy in our lives. Ramona was born on Valentines Day of 1982. That joy turned to even more sorry when we learned she had an infection. She had to stay in the hospital for 2 weeks after delivery. Thank God she was healthy after that. In May of 1982 I had my spleen removed. The experts at Sloan said their diagnosis was incorrect and that my Dr in New Jersey was correct with the Hairy Cell. I continue to see him every other month till this day for CBC. I do this just for my own benefit just in case something goes haywire it would be caught much sooner. I have been seeing this Dr for 25 years now. He does joke around now and is a little more mellow since we know each other so long. It does pay to get a second opinion. The people at Sloan are great, there is no question about that. But they did tell my wife and I that it was a good thing we had our daughter because I could never have any more children and with that I probably wouldn't be around to see them grow up. I am 52 now and I am so happy to say that I am a proud Grandpa of a 3 year old boy and a new baby granddaughter who is 2 months old. We also have another 20 year old daughter. I truly am the Luckiest Guy in the World also. I have never had any treatments, any kind of medicine at all. No blood transfusions. NOTHING!! After my spleen was removed my blood counts continue to be "normal" for someone with this disorder. I still have Hairy Cell and will always, but I am so lucky the way it turned out for us. NEVER GIVE UP HOPE. I AM SO BLESSED. Lukie47@aol.com
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