Sunday, July 27, 2014

Update

This is the f*cking crap I'm dealing with right now (skin rash photo below) and I want to crawl out of my skin. Literally. And I want to scream and beat on my pillows until I cry with exhaustion...

We think it's contact dermatitis but I won't know until tomorrow when I see the nurse.  My biggest concern is that it could be shingles since a lot of stage four cancer patients develop them towards the end. I really don't think it's shingles; didn't present with headache or fever. This photo may not be suitable for all viewers:




As for the regular update I went to MD Anderson and they agreed that the FGFR trial at Cedars was a good one for me. They didn't have anything for me that was in the immediate future. I asked about the vaccine trials but they said that one could become available in three days or three months but they weren't sure when... They would keep me on a wait list for when something opens up. 

Meanwhile I am supposed to start the screening for the trial, tomorrow and Tuesday, that includes all kinds of lab work, an echo, several EKG, a heart monitor I wear over night and skin biopsy. I'm worried about the skin biopsy part on Tuesday because if this stupid rash hasn't gone away then I might have to delay. 

I'm completely defeated and I just need a damn break. For the past three weekends in a row I have really wanted to do something with the kids but I have not been able to do anything. I lay in bed all the time, all day. I hardly see anyone because I am in pain and uncomfortable (even before the skin rash). I have no idea what Leo and Abby are thinking about me because they've spent very little time with me and when they do see me I probably look very fragile. Or like right now I have blisters all over my face. Lovely!



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