I was a whiney, childish brat today. I woke up feeling totally upset with myself. My mouth and throat were as dry as the Sahara. My eyes were flakey and crusted shut. My skin felt so dry and thin I thought it would tear. My skin is so itchy I wanted to rip my face and limbs off. Daniel tried to get me out of bed to eat something, but I refused. What’s the point of eating if the experience is going to be unpleasant? Might as well just stop eating altogether. Yeah, my stupid mentality is causing me to lose weight again. I don’t ever remember being this light. Kinda looking like a runway model, just much shorter. Then, Daniel had to give me the talk, the talk about how compared to others, how well I am doing. I am still alive, I’m walking and talking and doing quite normal things. My GVHD is very mild compared to other patients and currently I am off all transplant medications. Then I think a bit and reluctantly agree with him. I AM doing well. I’m actually doing VERY well. In fact, I couldn’t be doing any better for a post-transplant patient. What more could I ask for? Well, I still felt like a brat. I still wanted to whine and complain about all the things I’m dealing with right now. But in the end, I got up and ate something and had 2 tall glasses of iced tea with lemon. Cold drinks seem to be keeping me alive these days. It’s the only thing that tastes right, and doesn’t hurt my mouth.
OK, I’ll stop whining now. So, I’m currently suffering from “mild” GVHD of the skin and mouth as in previous weeks. My doctor “threatened” to put me back on immunosuppressants if the condition got worse, but so far, he doesn’t think it got worse. I really don’t want to go back on immunosuppressants. They bring a whole host of side effects and it means taking a step backwards, so I really wish the condition doesn’t worsen. He wanted me to use some steroid creams for my itching but I tried not to. I don’t like steroids so I try to stay away as much as possible. I’ve just been using over-the-counter drug store stuff like Aveeno and Cetaphil for eczema – that’s why I’ve been wanting to rip my face and limbs off. They weren’t helping much with the itching. As for my dry mouth, I keep choking on food and they don’t taste good so I don’t like to eat anymore. That’s it, end of story. But I always end up eating a little bit cause I know I need it to survive.
My blood counts are generally rising nicely. Platelets, white blood cells, neutrophils are all on an upward trend. Red blood cells were on an upward trend last week, but they’re dropping again this week, so some good news and some bad news I guess. The doctor’s not worried about this though. At the moment, he’s more concerned about controlling my GVHD in a timely manner. That PCR test I told you about last post? Well, “something” happened at the lab and they don’t have the results, so the test was repeated and I’m STILL waiting for them. Recall that the PCR test monitors whether there are any CML cells detectable in my blood (i.e., if there is any relapse). So maybe I’ll have results next week.
Some very sad news. Jeremy Kong lost his battle with AML. I think he was only 3 years old. Please pray for his soul and for his family.
I received an email from Emily Walsh, Community Outreach Director for the Mesothelioma Cancer Alliance. She asked me to share a link in honor of Mesothelioma Awareness Day (Sept. 26). Oops, I’m late, but better late than never!!! So, if you have time, please click on the following link and find out a little bit more about this little known, but aggressive type of cancer: http://www.mesothelioma.com/blog/authors/emily/8-things-you-should-know-about-mesothelioma.htm