Time for an update. First things first, I want to report that we had another changing of the guard as far as caregiver services. Its been a week now but last Saturday, Tracey headed back to Chicago and Sunday my dad flew in. It was a long stint for Tracey and I will never be able to express my graditute for all she did over the last 8 weeks. With Dad in town things have shifted quite a bit to projects, projects, projects. There have been so many little tasks that we have not been able to get to or are skilled to do and dad it has been able to “get things done”. I will not go into the list but wow has it been helpful to have him around. I feel bad that he has not been out to AZ in over 8 years and here he is working on my home and driving me around to clinical visits. I know he does not mind but I feel bad.
Now as for me. Things are not changing much, we are still lowering meds and I am still dealing with the BK virus and possible re-visit of GVHD. This has been disappointing, but as you have all been hearing, it is to be expected. We can expect sideffects to be an on-going issue for some time. We are getting more and more into the personal side of this transplant process. No one's body deals with the transplant the same and it is turning out to look like my body is looking to make things a bit more of an issue. As we get closer to the 100 day mile stone, it looks like this is going to be more of a process for me. I am still working through issues that we would have hoped would have passed by know. My personal expextations have been high all along and it has been difficult to meet many of my personal goals. Personally, I had expected to return to work “full time” by day 100, yet I am still taking pain pills and unable to drive a car. So my goals are still out there, they are just further out than I had been expecting. I don't want this to turn into a negative post, just trying to keep people informed as we come close to the big mile stone of 100 days from transplant. Don't get me wrong, this is a HUGE mile stone- it just is not an end and I am not where I wanted to be at this point; when I planned this all out in my head, so many months ago.
Alright enough for now. Take care all - I will post again soon,
Tony
