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
How about this Tony. Hows about you think of your self in the Canyon going up the north rim Having already hiked down the south rim and across through Phantom Ranch and Cottonwood. You are looking for that little table like thing that marks (for me anyway) approximately the quarter mile left to hike. You are exhausted and the rain is blowing in your face so hard it pisses you off but there is only a quarter mile left to go. Look back across the Canyon my friend. Look at all the ground you have covered! Think of the flash flood you have gotten past and the blisters you have gotten. Now remember you are almost there. You may have to walk from the TH to the cabins if no one is nice enough to offer you a ride but you are almost to the north rim! If Collin or Tim haven't put any rocks in your pack that you don't know about suddenly your pack seems so much lighter as you round that last corner knowing there is a set of steps you will be taking that will lead you to the parking lot. If you wait for me at those stairs like you have in the past I will be there and we can walk together to the cabins. We all love you Tony and you are not going through this alone. Todd and I and all your friends and familiy will walk with you and help you be strong. Don't let this rain and sleet and hail get the best of you. The Canyon is amazing place and you have come so far!
ReplyDeleteGlad Dad's out there, and I know he's happy to be helping around with things! You may not be quite up to where you wanted to be, but I think you have come an amazing way, absolutely amazing!
ReplyDeleteLove you,
Auntie Betty
XXOO
Hang in there Tony, you've been through a lot. Kep your chin up.
ReplyDeleteAwesome analogy Diane!
ReplyDeleteTony - Guess what I went up to the Slot Canyon this past weekend & thought of you! I remembered the image you bought & I now have a new one that sorta reflects your personal journey! I just need to figure a way to get it to you!
I am counting down to your 100 day milestone :) & some good progress !
99...
ReplyDeleteMay 24th...99 days...but who's counting XXXOOO
ReplyDeleteMay 25th! 100 DAYS!!!!!!!!! You are amazing!!!
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Auntie Betty & Uncle Ron