Oh my god. I would say the past 20 some days after transplant have been a breeze, minus the few hiccups that I have had. But once you get into the 30 some days after transplant, that is when shit starts to get real. I have considered myself pretty lucky considering everything I have had to go through so far, which I still do. But once you actually start having things happen to you in result to the chemo, radiation, and transplant, it really starts to wear on you. I am pretty much in the “hot zone” to get any sort of Graft Vs Host Disease, which I have talked about before, and basically what it is, is when the donors cells don’t agree with your cells. In a way, I feel you want some sort of this to happen, that way you know something is at least happening in your body, and you can hopefully fix it with the million different meds they have for everything! So currently, what I have going on for my GVHD is a very, very itchy skin rash that is all over. I. Can’t. Stop. Scratching!!!! I have a cream they gave me to put on three times a day, but of course it’s not some miracle worker. It helps a little bit, but I just want it to go away! Haha. I also have developed another kind of GVHD that is attached to my GI Tract. So it’s effecting my upper and lower gut, which essentially just feels like really bad cramps and you can’t stay out of the bathroom. It’s a pretty shitty situation. (No pun intended) 😜 I would say this part is the worst. Just always feeling like you have a stomach ache. I have always had a weak stomach so this feels like a bad nightmare for me. So I am just trying to stay on top of my anti nausea meds to try and get some traction on this thing. They have started me on Prednisone that will help treat my GVHD, I haven’t noticed much help with it yet, but since this is a type of steroid, it should help me gain more weight, still haven’t hit triple digits. Yikes! But we are working on it. I still pretty much have an appetite, I just have to be careful of what I am eating so it doesn’t upset anything in my GI Tract. So I’ve been sticking to pretty bland food for now, and it seems to help a little, just trying to stay consistent. I just can’t wait until I can get ahead of this cause this has been by far the hardest part of this whole thing so far. I am still trying to stay positive, cause I know it’ll go away, I just do a lot of bitching in between cause it’s so so so uncomfortable! So I’m sure my dad and Tyler really appreciate it. My face also has been so dry and itchy, so I am trying to go through any sorts of lotions and scrubs I can to get that back to normal cause there is nothing worse than a dry face! It’s driving me crazy! My eyebrows are starting to come out because I keep scratching at them, ugh just the thing I didn’t want. I don’t want to be smooth! Haha but my hair is growing back, slowly but surely. Right now, it’s actually like a light brownish red color. Should be interesting to see what color it decides to come back to. #brunetteforlife.
Aside from those few things I have going on, things have been pretty good. My dad and I try to go on walks when I can, or go visit up to the rooftop that they have provided for us at our building. There is nothing better than fresh air! So that’s always nice when I get up and move around at a decent pace. It’s great because I only go to the clinic every Tuesday and Friday. So the rest of the time, we really have to ourselves. But I’m still on a lot of restrictions so that makes it tough. I just want to go home for a weekend and see my house, and my sweet puppy! Ugh I miss him so much. But maybe we can do that once I get rid of the GVHD and go from there. Oh! Also, I had a bone marrow biopsy a couple weeks ago, and I will get these done every 28 days until I am free to leave this place, but the first one came back awesome! There is no sign of any leukemia anywhere in my body, they do a few tests to measure and even the DNA test came back negative. So we just need the next 3 more bone marrow biopsies to go the same, and that would just be amazing!!! Just need to keep taking my meds and hope to god nothing else goes wrong.
Anyway, guess that is all that has happened so far, just scratching my damn skin off my bones and trying to stay sane. It’s been so great having my dad up here though. We go through our times of bickering, but he really is the best caregiver. He has everything so damn organized and it really makes things so much easier on all of us. I couldn’t be more grateful for that. So thank you so much, Daddy! It’s your birthday today, I wish we could go do something to celebrate but maybe just a nice walk or something. Or go play at the Tesla store again 😜 We will figure something out.
Anyway, thanks again for all the continued support. Hopefully soon I can start to feel normal and back to my regular self. I appreciate all the little gifts I have been sent, and kind words, it always helps make the time go by a little easier and bring a smile to my face. I only have about 2 more months of this crap, so I’m just trying to power through. If everything goes well, the docs goal for me to go home is by Thanksgiving. So fingers crossed!!!
I love and miss all my friends so much! Can’t wait until we can see each other again and get life back to normal! Soon enough, soon enough. until then, I’ll be scratching away and hoping this stuff goes away!
Much love!
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