Feb 11, 2018 Latest post:
May 24, 2018
About 25 years ago my doctor did not like my blood counts at my annual physical and referred me to a hematology specialist. After some tests he informed me that I had a blood disorder called myeloproliferative disease that there was nothing I could do about, but that some day I would have a problem, probably leukemia. He said to keep checking my blood closely and watch for any changes. Since then I was checked every six months and while my counts were always out of range, they were stable. Then in 2017....that day came!
In April I started noticing odd symptoms. Frequent fevers, night sweats, daily fatigue and my whole body ached all the time. I just assumed it was my thyroid acting up because I had just started on meds to control that. At my June physical my white counts were high as always, but based on my symptoms we thought it would be prudent to do further testing and I visited the hematology clinic at Roswell Cancer in Buffalo. After a few visits and some tests in the hospital in late September I had my diagnosis, Myelofibrosis. My bone marrow was not working to make blood and my spleen was double in size trying to convince itself it could do what bone marrow should. Unfortunately I was in the most advanced stage which forced me into a critical decision. See if I could live another 3-4 years and hope that the cure being worked on succeeds and is available or opt for a bone marrow/stem cell transplant which is risky and successful half the time, but could save me. The problem is that if I opted to stall and hope, I may either run out of time or be too old to get a transplant at a later date.
Since it was time to head to our home in Florida for the season, the prudent thing was to visit Moffitt Cancer in Tampa for a second opinion. It only took one meeting there for them to confirm what I had heard from Roswell. Based on my options, getting the transplant done was a no brainer to me. The more difficult decision was where to have it done and we looked at all the top specialists in the US before decided on going to Moffitt for a variety of reasons including where would I be most comfortable recuperating and the fantastic experience we had there when my wife fought her cancer battle. At that point I started on a chemo drug which while costing me a lot of hair has done wonderful things controlling my symptoms and making me feel as if nothing is even wrong. There have been numerous hospital visits to keep checking on my progress while I waited for the donor search to be concluded.
While unfortunately my brother did not match who would have been the optimal donor, I was lucky to have five other donors come through the national registry which were good matches. At that point testing is done and my transplant team actually dives into the cellular level to determine who should be the #1 candidate. That decision was made last week and now I am waiting for a schedule to be arranged for the process to begin. Of course I am not anxious to go through the chemotherapy regimen required, nor the 90 days of post transplant recovery and confinement, I really want to get started, get this behind me and return to what I hope will be the retirement years I planned on. So many people have reached out it really makes one appreciate the value of friends. So the purpose of this site is to make it easy for me to keep you in the loop without you feeling like you are intruding or bugging me to see how i am doing. I hope to make regular posts as things progress and If I am not up to it, Sheila can jump in with that. So more to come as the story unfolds!