I'd been writing this morning, about how, knowing our track record so far, we wouldn't get any news today. That even though my brother's liver biopsy was fine, and the two liver tests before that were fine, and the hematologist gave an ok before that and that this was the absolute, very last hurdle he needed to get past before we'd get a new date, most likely, we'd be left hanging.
I was wrong.
He got news.
But not the news we were hoping for.
They want him to see another specialist.
Yes, yet another specialist.
Someone they hadn't mentioned before. An expert in infectious diseases.
Seriously, what the fuck.
Nope. That didn't do it. I don't think anyone can begin to grasp the enormity of what I'm feeling:
SERIOUSLY. WHAT THE FUCK.
Couldn't this have been brought up during the past month plus we've been waiting for all these results to come in? If there was something they thought was still an issue, why wasn't anything mentioned before now? How come, after he's been told over and over that each hoop he'd gone through was the very last one, there's always another?
This goes so far beyond the frustration of waiting it's almost indescribable.
This is agony. This is grossly unfair. This is insane, ridiculous, bordering on cruel. I get the whole no stone left unturned thing. Truly, I do. Making as absolutely sure as possible, before taking on something as huge as a transplant, that everything is in order is responsible and I'm all for that. This is a life on the line. Two, if we throw mine into the mix. But shit, did it really need to be dragged on this long?
Shouldn't this liver thing have been looked into before a donor even entered the picture? Couldn't any of these additional avenues been examined simultaneously? Why wasn't anyone laying out the big picture for the patients involved?
We are people. With feelings, expectations, fears, anxiety (ok, when it comes to the neurotic stuff I'm mostly talking about me). One of us is living on hold, the other one is getting progressively sicker.
We're not just cases at weekly round table discussions. Not just organs that work and that don't. Not just bodies to slice open and reorganize.
These are lives that are being lived in a strange, impossible to explain vacuum. My brother and I are facing life changing surgery, living with hopes beyond hopes that all will work, grappling with the reality that all might not. We have relatives and friends who are worried, concerned, stressed. Living with this huge unknown hanging over everything is getting progressively harder the longer it goes on.
I don't even care about how I feel anymore. I just want my brother to be better and it can't happen soon enough.
Only now yet another wrench has been thrown into our mix.