I feel like my recovery is going backwards this week.
Last week’s mouth sores subsided in terms of pain. The swab results came back negative for any treatable virus or bacteria. The doctor can’t confirm if it’s GVHD of the mouth – it “could” be was his answer to me. Everything still tastes like cardboard. This may sound like not a big deal, and it isn’t, really, except that it is mentally quite devastating for me, much more so than my hair loss. I have to face the disappointment of eating cardboard 3 times a day and there have been many times where I just refused food outright. I know I’m an adult and I should know better, but I just can’t eat. Everything I eat must be slathered with sauce or be moist, or it just physically won’t go down due to my dry mouth. Please, please, please…let this recover soon.
My hands and feet started to get real puffy and itchy. The doctor thinks this is GVHD of the skin. Of course, there’s no definitive test, but he looked at it and thought it was. So, he told me to hold my cyclosporine (immunosuppressant medication) at current levels so that the situation doesn’t become too bad too quickly. In previous weeks, we were trying to wean myself off the cyclosporine. As soon as we did that, the mouth thing happened and now the skin thing. So far, nothing too painful or dangerous so I am grateful.
And I also found out that my cytomegalovirus (CMV) is positive again. It was positive when I was discharged from the hospital and was successfully controlled by medication. Now, it’s positive again, so I will be back on the same medication again. Not what I wanted to happen cause the medication can reduce my blood counts to dangerous levels and then we have to figure out what to do to bring it back up. Just more complications to deal with I guess.
OK, I should stop complaining. In the grand scheme of things, these things are nothing compared to some really bad things that could happen. I have to keep reminding myself that I must look at the big picture. What’s a few bumps in the road? I’ll survive these. I must remember to give thanks to God for keeping me safe and strong.