While playing golf at the end of August, 2009, I noticed an unusual pain in the side of my neck where I had surgery several years ago. I go to our family doctor who wants an ultrasound to see what's going on. First ultrasound was inconclusive so I'm sent to the emergency room where they have better equipment. As a standard ER procedure, they drew blood upon admission and then sent me for the ultrasound. A short time later, the ER doctor comes out and says "I'm not worried about your neck: you have no white blood cells! You need to see an oncologist ASAP"!
After a very long weekend, I go to the oncologist who looks at the ER blood work as well as his labs blood work and has me lie face down on the exam table and draws marrow from my hip. (with a local anesthesia) I get a call that night from the oncologist; I have Acute Myeloid Leukemia, he wants to see me and my wife first thing the next morning so we can discuss the treatment for AML.
"Pack a bag and check in to the hospital in West Palm Beach and plan on being there for 30 days. If the AML goes into remission from the chemo, we will look for a bone marrow donor. The prognosis isn't good"!
Physically I feel absolutely fine, none of the symptoms normally associated with Leukemia; fatigue, weight loss, fever, and a few others. I'm not sure what would have happened if I hadn't had that pain in my neck.
About three days after the first dose of chemo, I was no longer feeling fine. It really knocks you for a loop but I didn't have a lot of problems with nausea for which I'm thankful. So after losing all of my hair, most of my appetite, 40 pounds, and experiencing a variety of pain medicines, we were approaching the 30 day mark and hopefully seeing the AML go into remission. Additional bone marrow biopsies weren't promising and there was concern that they would have to repeat the first (strong) chemo which could possibly kill me; but there weren't any other options. Another biopsy a few days later gave us the good news; remission. The search for a donor could begin. Based on my age (70) I needed a perfect match, 10 out of 10 of the parameters they use to determine compatibility. We were told to expect a delay of a few months before the actual transplant, assuming they found a donor. Those few months were spent with return trips to the hospital for additional chemo, only for a week at a time, and two trips for the expected problems with infections.
We found out in late February that we had a donor and should plan on checking in to the Moffitt Cancer Center (Tampa) in early April for even stronger chemo, and then the transplant followed by close monitoring to make sure my body doesn't reject the transplant. This would begin 6 months post diagnosis. If all goes well it would be one month in the hospital followed by two months in a "clean" apartment within 10 minutes of the hospital. At some point, we were told that the donor was a 21 year old female from the US but that was all we could be told at the time.
The month preceding the trip to Moffitt was actually pretty comfortable, I felt almost human. I also knew that this was about to change.
Stay tuned for the continuation of his perspective coming in Part 2!
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