1/19/05 I have been thinking

Just those mere words must have scared the hell out of you. I got married in 1993 right after a hail storm and the place we were getting married at had a black out which I am sure many of you still sweat about when/if you ever think about it. 100% humidity, 100 degrees and no air conditioning, the food was not as we paid for, no electricity till after 10 PM that night, when the band played too loud the little emergency power we had would turn off and many of the older folks went out to their cars or back to their rooms which did have electricity or power to cool off. After a year of marriage we wanted children and had a number of procedures at Cornell over the next few years with no success. One 1/2 years (3/95) after our marriage I was diagnosed with Chronic lymphocites Leukemia (CLL). The few months prior to starting my chemo I had to go to Yale, wait in a line to use the bathroom and get myself off in a little plastic jar or what others might call, bank sperm. This was to insure our ability to have children. The elevator was right next door and you could always hear people talking; do you know how that feels with you pants down around your ankles? You could always tell there was somebody next in line because they were holding a little brown bag which only you and everybody else there new contained that sacred plastic container. The bathroom was just a regular bathroom with a few ripped up used magazines and nowhere even to put them down except the sink. These factors really made you feel relaxed. The best part was taking your sperm upstairs to a women technician to have her count it for you. I then went through 10 months of chemotherapy and a Bone Marrow Transplant (7/96) at a Harvard affiliated hospital, the Dana Farber Cancer Institute. Post transplant I had a lung biopsy, my thyroid burnt out, I became anemic and my vision went from perfect to nearly nothing due to wet macular degeneration with required multiple laser surgeries and cataract surgery on both eyes. During this time we proceeded with many unsuccessful attempts at conceiving and decided to adopt children choosing Russia as our country of choice. In 1998 we adopted a girl and in 2001 we adopted a boy. For the next year all was pretty good or as good as it can be with two young children. They were/are both adorable and we could not ask for any better children but kids will be kids. By February 2003 I came out of a 6 1/2 year remission. Over the next 18 months we tried 3 Donor Lymphocyte infusions (DLI's) including one utilizing Dendritic Cells. I was the first patient ever to have Dendritic cells infused into me. All three DLI's failed and my counts continued to rise rapidly after each failure. We were able to bring them down with a monoclonal antibody, but it would only work for about 6 weeks; not long enough for the DLI's to have a real chance. In July of 2004 I was faced with what to do next to keep my life going and decided to go for a Stem Cell Transplant referred to as a Mini Transplant. For the next 4 months from July 2004 I had 4 sessions consisting of 5 straight days of a combination treatment consisting of chemotherapy and another monoclonal antibody. The monoclonal antibody was supposed to be tough at the beginning session or 2 and most people had less problems as treatments went on. In my case as the treatments went on I had more issues and that was why we stopped at 4. Over the next 2 months I was busy getting tested in preparation for my second transplant. Three weeks prior I needed to get my sinus' rotor rootered. On 12/28 I was admitted to another Harvard affiliated hospital on, Brigham & Women's, which performs all in patient services for Dana Farber these days. The rest you can read about in this blog.

I guess I must be a very smart person having been educated by 3 different Ivy League Schools - Yale, Cornell and Harvard.

The past 11+ years have been quite a wild ride for me and my family. But here I am post transplant, feeling good, with a positive attitude and just looking forward to being able to do and go where, when and how I want to at my discretion.