Bad Day? Am I Still Allowed to Have Those?

So when I saw the doctor this morning she was like, "you're doing so great! you're amazing! We're so happy! You're doing SO well that we can't discharge you till Saturday!" They're spending these days getting me on to all medicines by mouth and this very important anti-rejection drug, Tacrolimus, dosage is measured by it's effect on your liver.  So each day they give you a dose and check how it's taxed the liver. Can't be too much or too little.  My liver keeps healing more and more everyday and so they can't catch the right number for me.  So I get to stay an extra day...

And then there's the crazy yellow paint medicine that has my face and neck in a rash that itches and burns. It's had me in tears all day.  If you read the literature on it, this is a side effect, but it's not on the severe list.  Plus, it's a medicine that prevents a deadly pnemonia. So as much wimpering as I do, I'm not going to get out of taking it. 

And then, more people today than ever have said things to me like, "Wow, I've been reading about you, you've had a really hard run".  Or "Wow, you got through one of the hardest protocol we offer here at Sloan Kettering. You had a tough time, but you did it!" Apparently my liver was filling with fluid and my heart was racing out of my chest and it cut supply to my brain and made me severely delusional. That was part of what bought me a week in the ICU. "Luckily those things return", said the informer of that news.  

In a way it was good to hear about some of the things that happened because I feel the effects of having gone through something really hard without knowing if that's true or not. Potentially a little crazy making.  Maybe a little delayed stress? Maybe just wigged-out and worn down by a rashy face. You see, the thing is that, yes I had a miraculous transplant, and so it makes me feel less entitled to any negative emoitions about it. It's kind of horrible.  Any time I have a complaining thought there's part of me, and other people too, that says, "Yeah but, you just got a do-over! You're so lucky! don't complain!" 

I feel like I got to go surfing in the hardest but most beautiful waters in the world, and got hit by a wave that knocked my ass back on the sand, sitting facing the ocean, thinking, "What is that?" And feeling bumped and bruised up and someone walks by and says, "Yeah man, but you just surfed the Great Kahuna Wuna!" Like if I'm not in this super grateful stupor at every moment than I've really missed the point of this...

I've never really been a naturally optimistic person. I'm more of a worrier and on the timid side of life. I'm semi-adventurous. Not out of choice. Just nature. Fear? I don't know. And I think part of me was hoping that the transplant would take away that fear and make me just a natural go-getter. I work really hard on trying not to pass this thinking onto my kids and I'm doing well at that, but when it comes to me, it doesn't feel at all like that "change-a-brain surgury" I thought I was coming here for. It feels like me, Dina, post-transplant.  Dina struggling with having a bad day.  Kind of making the whole thing worse, no? 

I feel like there's some reconciliation that needs to be made. I've been fighting so hard for three years for my life.  It can feel really discouraging when your own body, or life, works against you. But I don't have that anymore.  And I base that on the pure glee on the doctor's face today.  I do know that right now is crucial for me still and I got freaked-out, almost mad, today when I heard someone sneeze. Germs scare me. Having to be super-duper strong scares me.  Having a compromised immune system scares me. And I don't just naturally think, "don't worry. everything will fine..." I want to. I really do. Boy, am I having a bad day...