Keep your eye on the prize

I saw my doctor on Friday and he's less concerned about acute GVHD now that I'm almost at the 5-month mark since I got my transplant. 5 months already! When it's January 7th it'll be 5 months, meaning February 7th is 6 months since my transplant, and if all continues to go well, I might be able to go back to eating and going out like a normal person.

I'm so glad and grateful to have made it through the highest risk period for acute GVHD, but needless to say, this doesn't mean I'm out of the woods. Your body can reject the transplant at any point up to a year after you get it. But at the same time, of course it's still good news that I've made it to this point, and it feels wonderful to be here--and that sure is a freakin' understatement!

Other things I still have to worry about include colds, flus, and infections, all of which can be very dangerous to me still. Another thing I fear at the back of my mind is another relapse. It's not like much can be done for me if I relapse again. It would be extremely, extremely bad news indeed. So I try my best not to think about that.

So far, so good--and that's all we need to know, right?

(Ha, imagine it were that easy to keep your mind on the prize?)

That being said, I AM very excited for February. The 6-month point. I wonder if I'll be able to eat what I want then. I wonder if I'll be able to go to restaurants. I wonder if I'll be able to have sushi. I wonder if I'll be able to have alcohol.

It'll be around my birthday, so what perfect timing that would all be, huh?

Arrrghhhhh

If one more person tells me to "try to distract myself from my anxiety with hobbies" I will lose it. I'm so tired of explaining that when you're anxious, creative things are the most difficult things to do. Tonight I decided fuck it, let's get back into my hobbies, and tried playing Breath of the Wild. Forget it. I got stuck at what should be a relatively easy puzzle. The more I tried the more frustrated I got, so I stopped before I got too angry. So I go play piano instead. I can't figure out any new music. That makes sense, because how could I do that with this level of anxiety? No problem. So I try to play a medley of stuff I've always known and have a really, really hard time trying to remember The Land Before Time soundtrack, which makes no sense because I've been playing it on the piano since I was a little girl. I played a few other things and saved my favourite for last--Beethoven's 7th Allegreto--and I can't remember it. All I remember are a few broken parts. I've been playing this *non-stop* since I was in the 10th grade, where did it go? Playing it (and the Land Before Time soundtrack) gives me such a sense of peace. And now I can't even do that?

Not being able to figure out new music is one thing, but not being able to play old favourites is just torture. Not to mention, why is my long-term memory suddenly affected? I'm used to my short-term memory being rubbish these days, but my long-term memory shouldn't be affected like this.

So now I feel positively awful; 10,000x worse than if I had just watched TV all night like I had been doing. So I guess I'm back to being stuck watching TV shows and movies all day. It's just getting so repetitive. I'm tired of being so anxious all the time. It's so exhausting.

Needing some alone time

After having a constant revolving door of (super incredibly lovely) people constantly here, I had a day to myself yesterday. I can't find the words to explain how tired I got from having no alone time for so long. It's tough. Even if the people are awesome, it's draining, both physically and emotionally. I did my best and tried to balance out the constant company by making to sure to always give each other space, watch shows together and be on my phone a lot...but truth be told, that's pretty much all I had energy for anyway! Oh, I'm so very grateful for everyone who came and stayed with me, whether it was for a week (or more!), or just a few hours. So very, very grateful for all my amazing, terrific caregivers indeed, and that is an understatement. But I'm also grateful for alone time. It's just something the body and mind need, right?

I get tired so quickly still. Again, I feel it so hard so both physically and emotionally, but yesterday with all my alone time, I felt intensely physically exhausted in particular. I fried eggs (you know, something a 10-year-old could do), washed the dishes, and wrote one single Christmas card. I also organized some stuff in my purse for an appointment I had today. Well, wouldn't you know it felt like I had run a marathon. I mean, I guess I gotta count all the hand washings in between all those things. Like a hundred times a day. I'm so tired of washing my hands. Oh, and the taking of so many pills. And applying so many creams. Etc, etc. I know it doesn't sound like much, but when you add it all up, all these many, many little things, on top of everything else, when you're already so exhausted...it's a lot. It really gets to you after awhile.

Today I had my OBGYN appointment. She's a specialist for folks who've had bone marrow transplants, so I feel really safe with her. Anyway, so far so good on that front, so that was a very nice reassurance. Tonight I'll have the apartment to myself again so we'll see how that goes. I'm hoping to have enough energy to do some gaming. Breath of the Wild (one of the best things to happen to me in a long time--that's right, I typed one of the best THINGS to happen to me in awhile, not even "one of the best games") is pretty high on my list of ways I hope to spend my time tonight.

Getting there

I've been off immune-suppressants for 13 days now! So far the only signs of GVHD I have is GVHD of the skin; got a pretty huge rash on my face a few weeks ago that looked like I had a chicken pox! My doctor gave me the first line of intervention, which is steroid cream, and that seems to keep it under control. As gross as it looks, I don't mind GVHD of the skin as long as that's where it stays. Just don't go after my organs, and all will be well, alright?

Speaking of which, I need to be super vigilant every day about any little change that may occur in my body. What would just be a normal stomachache for most people could be something very dangerous for me, so I constantly have to be on alert. As such, I'm also constantly in a state of anxiety. It's pretty exhausting (to put it mildly) and I wish I could handle it better. I'm just trying to get used to it but I'm really tired all of the time. I'm seeing a therapist but he isn't very useful, unfortunately.
At least most of my blood tests have been giving good results, so there's that. Lots of ups and downs, to be sure, but mostly things have been good. In fact, my doctor even said that if my next appointment (that's tomorrow!) goes well and if all seems stable,  he might even change my appointments to every two weeks instead of the once-a-week schedule we have going now.

Also! I had my first vaccine last week. So we're already starting with that. Pretty exciting, huh? My first one protects against pneumonia and a bunch of other things I've already forgotten. I still need two follow-up vaccines for this one. In all, it's going to take 2 years to get through all my vaccines. In the meantime, I just gotta really hope that I don't run into any non-vaccinated folks. That would be pretty scary.