Tuesday, June 21, 2011

day +1400

I haven't yet posted about my follow-up with Dr. C-M last Thursday. Overall, it went very well. My blood counts continue to be very strong although my weight dipped a bit down to 126lbs. Yikes! I know I'm thinner than I've ever been but I was surprised by the rapid loss. My appetite has been normal although my taste buds have been slightly off. I'm eating three meals a day and snacking. I am more active than I was just two weeks ago, however. The weight loss, they conclude, is water weight which I still don't understand. Staying hydrated has been a challenge for me but they continue to emphasize its importance especially with the arrival of summer. At the minimum, I should aim for 2.5 liters per day. Increased perspiration and the use of these toxic drugs on my kidneys make for a disastrous combo. So, again the only way out is to just drink, drink, drink!

I was informed that the nasal swab, which was administered at my June 9th appointment with the nurse practitioners, returned positive for the rhinovirus, the most prevalent strain of the common cold. The rhinovirus probably explains why my white cell count was elevated earlier. But this all old news. The cold has since disappeared.

While the dark hypo-pigmented rashes remain visible on large regions of my back and chest and pockets on my face and arms, my oncologist was pleased because they are not getting worse. If anything, a few have shrunk while some others have gone away. It will be a long time, I imagine though, before my skin clears up entirely.

He went on to say that because the first two attempts at tapering me off the immunosuppressive Tacrolimus have not worked out as hoped, I will be on this drug for a long time. I don't know what a "long time" means exactly and didn't ask. Whatever the answer is suspect to change based upon conditions, so all is speculation at this point. At the very least, it was somewhat nice to have a sense that there would be some certainty in all this: good ol' Tacro. The newest additions to my medical cocktail, however, they do plan to take me off at some point once things stabilize but who knows when that might be right now.

And in the midst of all this prescription talk, a new one was added: Bactrim DS (800/160mg 3x weekly - M-W-F) to help prevent pneumonia which I'm more susceptible to due to the Budesonide, a steroid.

I return to Sloan on July 14th to see Dr. C-M for the next follow-up. Until then, I just gotta keep carrying on.

Now, while I'm very thin, much weaker, and get fatigued easily, I have enough muster to get out and about and I've been doing that. Experiencing a flurry of artistic inspiration since school concluded almost two weeks ago now, I've been taking advantage of the free time to photograph whenever possible, testing new techniques, re-shooting former subjects, and I've been achieving some very satisfying results.

What I want to shoot and when is on my mind constantly. Honestly, I can't even sleep well some times because ideas are flickering through my mind. Whether at rest or out and about, I'm thinking, planning, and scouting all the time. Some of this (maybe a large degree) is out of a sense (a race really) of trying to make up for the weeks of opportunity lost while I was sick and then, secondly perhaps an understanding that once graduate school and work begin in September my free time will be much reduced.

While I know and in fact, do feel physically, that I've exerted myself too much while photographing at times, being outside in the element doing something I love has meant so much. Both physically (despite the fatigue) and emotionally, it is positive. This explosive period of artistic creativity reminds me of when I first began photographing the Harlem River soon after my transplant in 2007. Unexpectedly, that one morning walk across the 145th Street Bridge into Harlem and back changed my world and thereafter, I wouldn't look back. Almost four years later, I continue to walk its banks and neighborhoods inspired eager to share its story. In the midst of my most serious challenge since 2007, it's an emotional escape (and also perhaps more importantly, a desperate grasp for a greater sense personal control of my body) even if after a shoot of two or three hours I return home depleted. Yet, at the same time I acknowledge I need to get more rest. I'm not going to get it magically. I need to sit still which has been hard.


Comment Blogger Veronica said...

Hey Duane, I know I'm a slacker on following blogs lately, but clicked on yours today and was concerned by what I read, so I read a few more entries to catch up......so glad that it isn't cancer related, but so sorry you're having to endure more GvHD difficulties.
Just wanted you to know that you're still in our thoughts and to send you lots of hope that this will pass soon.......Vx

7:28 AM  
Comment Anonymous EFG said...

the photo of the flower is simply spectacular!

2:32 PM  

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