Friday, April 4, 2008

Another day in the life

Day +311

WBC 2.5 K/uL
RBC 4.08 M/uL
HGB 13.0 G/dL
PLT 460 K/uL
ANC > 1.0 K/uL

I'm feeling a bit brain dead, so I'm going to warm up by writing about something non-serious.

Last week while we were out running errands, Chris suggested that we get lunch, as in go into an actual restaurant and eat in public. Since we were in the vicinity of our old neighborhood, we decided to drop in on a friend who just happens to also own the New York Bagel on Jefferson. By happy coincidence, her name is also Ann and I hadn't seen her in close to two years.

We managed to get in ahead of the lunch rush so we were able to visit with Ann for a few minutes before she got slammed. It's still surreal to get to see friends in person with little restrictions and even stranger to be eating in public. Ann hasn't changed at all and if you're in BR on Jefferson, I suggest you have the New York club at her deli. She was hyper vigilant about making sure that my sandwich was a sterile as possible to the point of insisting that it was served in a disposable container. She's just one of those amazingly thoughtful people who would do anything for a friend without being asked. She certainly did a lot for us while I was in Houston getting treatment over the last year and I'm hopeful that we'll get the chance to have dinner together someday soon. Now, if I could just track down her hilarious brother Matt...

My brain still feels a little slow, but I'll blog on anyway.

I saw Dr. Hymes yesterday and another dermatologist who was doing rounds with her. There's been a slight change in plans as far as my GvHD diagnosis is concerned. Since the GvH issue with my eyes has cleared up and is under control, I'm only displaying symptoms of the dermal variety, which makes treating it slightly more complicated. My GvH of the skin is so minor that it's almost indistinguishable from eczema. Add to this that my last skin biopsy came back as inconclusive--Dr. Hymes did say dead cells were present, but in very small numbers, and it's hard to definitively say that I have GvH. Everybody still with me?

Dr. Hymes wants to change gears as far as my treatment goes. She is starting to suspect that I've inherited the skin problems that will be plaguing my donor. Poor little guy is probably a scaly little mess. She's hypothesized that we'll have to treat me as though I have a slightly worse than mild case of eczema, meaning that I've added a host of prescription creams and unguents to my cadre of medicines. She took another skin biopsy, this time from my hip and I got to add two new stitches to my collection.

I have a brand new lotion that gets applied to my abdomen and flanks and it's side effects are strangely similar to the condition it treats. Itchy, burning, peeling, red skin. Do the benefits really out weigh the risks? It does sting a little when I apply it and I have to do it twice a day religiously. There's a new steroid cream living in the medicine cabinet that I have to apply to my hands twice a day Monday through Friday. On the weekends I get to apply triamcinolone to my hands in lieu of the new cream.

Total body application of Cerave cream has been escalated to at least three times a day. Grrrrr.

As for the deformed fingernails and missing cuticles, the new diagnosis is paronychia. Chris googled it and I do believe that I'll be having nightmares for some time to come. If you like to live dangerously, google it so that you can peruse the truly disgusting pictures of other people's cases. The short list on this condition is that my nail beds have detached from the skin surrounding it and it can't heal because water is constantly getting trapped in the pocket that it's created. I've been instructed to keep my hands as dry as possible and if they do get wet, I have to use the blow dryer set on cool to help eliminate any water that might have crept in. Grrrrrrrr. I also have to use a prescription cream used to treat fungal and yeast infections twice a day for the just in case factor.

The new dermatologist took a skin scraping from a wickedly itchy patch of GvH located on the bottom of one toe and I wait with baited breath to see how the lab classifies it. I also get to use the anti-fungal cream here, just in case.

Dr. Hymes discussed other treatment options including light therapy and tacro cream. She's against both because the light therapy might treat what I currently have, but would most certainly cause a GvH flare up elsewhere. The tacro cream has been "black boxed" by the FDA because it might increase the chance of malignancies after treatment. It's essentially an immunosuppressant just like the prograf I was on. The danger here is that it could cause a flare up of my EBv which would lead to PTLD. Hello tumors. So, she's decided to take the safest course of action and we'll treat all of my little skin anomalies separately with the different creams. I've been warned to be patient with the paronychea as it could take a very long time to heal.

I've been allowed to cut back on the steroid oil used to treat my scalp, so I'm down to once every five days. I've been told that it could be up to six months before my hair fully grows in, if it ever does. Dr. Hymes is allowing me to use rogaine foam if I want to help things along. I'm thinking about it.

After the dermatology visit we went straight to stem cell transplant to see Dr. Kebriaei. We were very pleasantly surprised when she came out to tell us that my numbers were coming up and that she didn't feel the need to see me in a clinical sense since she felt that she would be charging me for nothing. I have to seriously love a doctor who is concerned with the total experience of her patients. My white blood cell count is still below normal, but it's climbed since my last visit. My red blood cell count in solidly normal as is my hemoglobin. The platelets are still above normal, so I'm still a clotting fool.

Chris will probably post the actual numbers after he reads this. I still feel really well, but I'm tired after such a long day yesterday, so that's the end of this.

1 comment:

pj said...

Strange to think we inherit the immune problems of our little guys. I used to have Raynaud's syndrome in my hands pre-transplant but it completely disappeared. It's thought to be an auto-immune issue, so it makes sense. I don't understand how they can separate auto-immune problems from gvhd; hurts my head to think about it. My skin issues are minor compared to yours, but definitely different from what I had before, which was just a little dry skin in winter. We'll see what my doctor says this week. Liked your deli story.