Day+156

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

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3 Responses to Day+156

  1. Cheryl Thornton says:

    Day +156 already…you know what that means don’t you…you are almost to 6months post transplant…half a year already!! That’s amazing…and it’s ok to be whiny for awhile…but much better to leave the pity party behind and send out positive energy – YOU ARE doing amazingly well compared to most transplant patients and there is no reason to think that you won’t keep getting better…the dry mouth thing lasts for a LONG time..I still get it some days – try lemonade or water with lemon – for me it’s tart and gets the saliva going – if you can’t eat, at least drink a protein shake – make your own or buy them – they are a great alternative for when you can’t get solid food in. You need to give yourself a break…your body needs time to heal and no drugs or immune suppressants at this stage is HUGE – REALLY HUGE – as I know some who are still on the meds 5 years post transplant. If your skin is itching try Benadryl cream or pills – they will help with the itch…I am almost 3 years post transplant and still having mild skin issues…I don’t worry about them – yes they are a pain – but remember that mild GVHD is what might be keeping the CML at bay – but don’t let it get out of hand, cause that can be bad

    Chin Up young warrior – YOU ARE ROCKIN’ IT!!!

    • helpsavewinnie says:

      Hey Cheryl, I think I’m starting to come to terms with the dry mouth thing slowly. I know that it may take a very long time to heal, if at all, so I’m just hoping and praying that it does eventually, that’s all I can do I guess. Although I still get whiney about it…

      Funny you call me “Young Warrior” – I certainly feel like a soldier in a battle that never seems to end. LOL! I guess I just have to be more like the Energizer Bunny, and keep go’in and go’in and go’in!

      Yeah, I understand that “mild” GVHD is the best type of GVHD to have (as opposed to no GVHD or severe GVHD)! I definitely should be grateful and I know it!

  2. Helen says:

    Hiya.you have just made me shift out of bed and stop feeling sorry for myself.tod my gvhd of skin is v v bad.My face and feet cracking and im flaking like a snow storm.I must be strong as I dont feel ill .Unlike you I can eat.It must be hard to enjoy youre food.Have you tried home made soups with extra seasoning.Tgats what Im having but Ive got piles ,ouch!!!.Are you able to go out,I hope so.Can you send me youre address.Perhas we should go back to old days and write and send pics

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