Apparently, people are still checking into my Blog (thanks), unfortunately, it seems that I have been neglecting my duties to update it. If I had to give an excuse, it would simply be that things have just been moving along so slowly lately that I don’t see (or feel) there is anything to report. Nothing has really gotten all that worse, I just don’t see any leaps forward and I guess I am looking for a leap. So the status…
· “Graft versus host disease” (GVHD) of my gut (diarrhea)– this seems to be back under control. GVHD is my biggest issue as it typically starts the treatment/medication loop. The doc’s need to give me meds to help my body from rejecting my very own organs, but the meds have some big side effects so I then need to take meds to help control the other meds. You can see the loop starting for form…
· Eyes – It turns out that these guys have been an issue ever since my first GVHD encounter back in the hospital (about day 25). The GVHD back then was more severe than we had thought and had in fact created scar tissue on my eye lids but the pain and steroid meds had been keeping things at bay and I didn’t feel any issues. As we start to lower levels of what I will call “maintenance meds,” we learn more about how my body has (or is) reacting to the transplant. We are sure there are more discoveries to come as we work towards removing as many medications as possible. As of now, my eye had felt like someone had placed a burlap sack in it, now it’s more like a piece of tissue paper - still annoying and a bit irritating but much more tolerable. It is about 50% better and I am applying different medicated drops 4 times a day to try and remove/improve the scar tissues. I have to tell you this eye issue made for an interesting 2 weeks of listening to the Olympics- it was challenging. There is a lot of “did you see that!”, “let’s see the replay…”, I am just saying it loses its effect when you just listen to TV especially the Olympics.
· Joint pain - we have had great improvements with this issue however the fear is that this relief may be due to the increase of steroids and not true progress. As we decrease the steroids again, we’ll see.
· Energy levels / Working – This one is hard to describe, there has been some increase in energy however I am “using it up” at work. This might seem a little crazy, but I need to go to work again. I need to think of and deal with “other things”, let alone I am running out sick and vacation time. After work, I am wiped out, but it does feel good to feel the accomplishments of the day. Simple stuff, I know but it’s helping me in the “mental” process of this transplant. I need to know that I can still do the work and that I can be at work. As far as overall energy level is concerned, I hope to get things up a few more levels soon and start back at some daily walks and build up some body strength.
· Driving – I left this one for last as this has been my greatest joy, I have been driving myself to work and to some doctor visits as of late. I did not realize (or remember) the independence driving can offer. Just the ability to listen to the music of YOUR choice, or stopping for a “big gulp” along the way just because you “want one” has been liberating.
· Karen back to work – Karen went back to work 2 weeks ago. That is going well. The kids from last year keep stopping in to ask how I am and so are Karen’s co-workers. There is a lot of support there for us and that is so great. Karen is pretty pooped each day, but still taking care of the home front as I am so tired each day. It’s working out though!
OK is it about time to end this turns out I have a lot more to say then I expected. Just to end things, I am doing well, but I am still waiting/hoping for that jump to being Tony again. These slow changes are getting tuff.
Thanks everyone for reading this and for your always-encouraging notes and thoughts, we ALWAYS appreciate it.
