It figures that after my rant in the last post that the world would turn and bring about some change, not that I am complaining =-).
The last couple of days have brought so very good news and a lot of clarity to the whole future/life/SCT thing.
First, I found out that my brother, Troy, is a perfect HLA match. I have three siblings and not only is great to have one of them as perfect match (my youngest sister is 5 out 6) but my brother is probably the best candidate as a donor. My two sisters are much younger (7 and 10) which might have become a issue during harvest. My brother on the other hand is 20 and would have any trouble receiving great factors or under going surgery. Even though I am still hoping to get an auto, it's nice to have this ace in up my shelve for any possible twist of Fate.
Second, I got some encouraging news on the future/life/career front. Last Spring I was accepted as a Master's student at the Cincinnati Conservatory of Music after winning by audition the ONLY graduate spot open for the Fall of '06. I was pretty excited as this was my first choice for both it's academics and private teacher. Unfortunately, the neuropathy I experienced during my first struggle with Hodgkin's disease made it unlikely that I would be up to playing standards for this past fall, so I chose to defer my enrollment one year. The Conservatory's Dean was not to happy about the situation and made if clear that one year was all that I was going to get to recover. So when I was Dxed with a relapse I figured I would loose my spot for sure. I finally got a hold of my private professor at CCM, Mr. Winstead, on this past Tuesday and after a long conversation he felt that my deferment should be continued at least until Jan'08, giving me enough time to recover before a possible return to my musical life. I can't express how surprised I was by his answer. CCM had been pretty icy about my deferment this whole time and I got this impression that they really didn't have that much faith in my possible recovery. I has been amazingly up lifting to have something to look forward to that is not cancer related. So much of my life at the moment is talking to doctor's, learning about SCT's, keeping up with my health that this very important part of my life, my music, has largely fallen into disuse. It is vindicating to know that what I have to say as an artist might still be viable.
I am getting closer to getting the transplant nailed down. I went to the second transplant clinic in Colorado, RMCC P/SL, on Monday to meet with Dr. McSwenney. I'd had some past experience with RMCC, which I can say wasn't all positive. I had my radiation done at there Littleton office and after the warm feeling of my Peds. office, CHOA, I was not ready for the cold face of adult cancer wards. It seemed like they didn't really care if I got better or how I was feeling, only that my insurance was up to date and that I was on time to my appointments. I can't say that my experience with there transplant wing was any different. Maybe I was just spoiled about the amazing treatment I received at my visit to the other transplant center in Colorado, Children's Hospital. Being 22,having a Peds disease, I am in this grey area between Peds and Adult. At RMCC, there was about 35 minutes worth of paper work to fill out, lots of forms that didn't apply to my situation (ie forms I would need if I was a patience, form for newly DXed patients, etc.) After that my father and I were herded into a small exam room and waited 45 minutes past our appointment time for the doctor to arrive. Now, I have no problem with waiting, I can understand that a transplant doctor is probably a busy guy, but no one stopped in to check on us or to at least feed us some BS story about why he was late. If they leave waiting now are they going to be able to respond quickly enough when you have a real problem? It might seem like I am nit-picking here, but in the world of SCT's it's the little things that kill. Dr. McSwenny was a nice man, if not a little forward and cold. He was very intelligent and had that self-confidence you want in a surgeon or transplant doctor. He painted his version of what my treatment should look like, a very different one than I received from Dr. Giller at Children's. While his pitch was well thought out, I could tell that he hadn't read my file very clearly and suggested a CBV regiment based in part that I hadn't yet received a dosage of cytoxan, a drug that I actually got a lot of in my front line treatment. I got the feeling I was in a Cancer factory...
So, there are still somethings with the tranpslant to clear up. I am currently talking to Transplant Center's in Houston, Minnesota, and Nebraska trying to get a range of opinions about what should be done and trying to lay down some contacts in the off case that I need to Allo transplant. There is not a center in Colorado that has any experience with Hodgkin's Allo transplantation so at that point out of state is a pretty much must.
Thanks to everyone that has shown there support in the past weeks. Anna, Amanda, and Lauryn for driving me to chemo and sticking around to keep me company. I know it can't be all that fun, but sure does much the day move faster! Also thanks to SCT's Anne and Natalia for their comments, support, and most importantly for having journeyed on this path before me.
Only one more induction of ICE!
All the best,
Darrel
