Thursday, April 28, 2011

living in the moment

I just called my transplant coordinator, the one person who's been a voice of calm in this crazy situation.  From the beginning she's been the one with the answers, the one who makes things happen, the one who's keeping things on a semblance of a track.

Her voicemail said she'd be out of the office for an extended period of time.

All I can do at this point is laugh. Ok, not really laugh, more like shrug my shoulders at how improbable this has all become.

Yesterday I got an email from the donor social worker wishing me the best of luck - she's heading out of the country on vacation for a couple of weeks.

And then, last night, as I was sitting in a Japanese restaurant in Princeton, NJ, on my way to talk FLOW with 10 women who'd bid on an evening talking with me, I got a text from my brother that we were facing another postponement.

Yup. You read it right. Another postponement. As I finished my pineapple fried rice and headed to an evening of menstrual chatting that I was mentally unprepared for, I found out the infection that he had last week was still on his system. He needs 6 more IV doses of antibiotics but will only be at dialysis 5 times until surgery.

Meanwhile, I was supposed to be up at the lab at 8 this morning for blood tests (vials 23, 24, and 25). I got a call from the hospital yesterday about yet more blood work that needs to be done. I'm supposed to spend next Tuesday uptown for pre-op testing.

And, at this point, I have no idea what's happening. Or who's in charge. Or when there will be an answer. Or if there's an answer to be had.

But, it's looking like the 9th isn't happening. That the blood I had drawn this morning was for nothing. Most important though is that my brother has to be in the best shape possible as he goes into surgery and he's not there yet.

He will be. We'll get there. No one said this would be easy. So, for now, it's just more breathing and patience and trusting that all will be fine in the end.

And in my heart, I know it will be.

Tuesday, April 26, 2011

just before the free fall

I've been trying to think of what you call that last climb of the roller coaster, those moments when the car creaks to an almost halt before the last huge downhill that makes your heart pound, as wind rushes through your hair, skin pulled tight against your face as you careen out of control.

That's where I am. Right now.

The past few days have been the build up to this moment.

Thursday my brother's liver expert was back from vacation but he didn't hear anything. Saturday he found out the biopsy was fine.

Yesterday he was told he needed more testing by more specialists.

This morning I vented my frustrations to the donor social worker. An hour later my transplant coordinator called. With a transplant date. Which was a total shock. I had no idea the conversation was going in that direction. We were talking about the new testing, about communication lapses, about how much brother's been feeling lately. And next thing I know we're setting a time for me to go in for additional blood tests, to make sure I haven't contracted HIV or hepatitis in the past few weeks. I'll be at the lab first thing Thursday morning. And up at the hospital next Tuesday for pre-op testing.

Because, our transplant date is 5.9.11.

That is, as long as that worked for my brother. No one had spoken to him yet. And no one would for hours. I got the news at 12:30 or so and wasn't able to get in touch with him until after 4.

But I knew he'd be fine with the date.

Which is 13 days from today. And now, something entirely new is kicking in. But somehow, it's easier this time. Facing surgery, contemplating recovery, staring down the unknowns.

I'm learning to be ok with what it is. It will be what it will be and there's nothing I can do about it except bring myself to the table in the best shape I can be in, with the belief that this will work out.

And yes, I believe this will all work out. But man, I'm relieved to be at the top of the coaster, knowing I'm about to plunge into the unknown.

Monday, April 25, 2011

you can't make this shit up

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:


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.

Sunday, April 24, 2011

remembering to breathe

Yesterday my brother called. His gastroenterologist had just told him she's fine giving the transplant green light. His biopsy results were better than expected. From her perspective all is good to go. 

I was standing in the cold rain, jeans plastered to my legs, futilely searching for replacement glass shades down on the Bowery. That was after getting Jack to an early play date, doing 8 loads of laundry, much of that because of two dogs vomiting through the night, and extricating my car from an ineptly run garage. 

It had been a shit morning. That turned around so fast I felt whiplash in my neck. 

This was the last hurdle, the last issue, the last clearance we needed to get things back on track. 

And so, I did what I tend to do in these intense situations (anonymous 2: kidney donor, now is the time for you to head to another page), I crashed into a deep sleep. Woke up and had a major freak out. And then I went out to dinner.

I have to say, I've learned so much about myself through this process. I've also learned to accept myself more than I ever have. Instead of railing against who I am, berating myself for my weaknesses, feeling guilty or ashamed of who I am and how I react, I'm letting it be. Losing it is part of how I deal. The deep, sweeping emotions are who I am. When I don't let them flow, they eat away at me from the inside. 

I lived that for years. 

Not anymore.

I also am learning that even when, in the midst of it all it feels like I won't find my ground again, I always do. Always. And I think these endless delays have helped me get to a more grounded, realistic place to face surgery from.

I'm still scared. I'm still worried and nervous and anxious and shaky. I still visit what ifs. I still wish I had more control. I still, more than anything, want guarantees. 

I'm still me. 

But me with more tolerance for myself and acceptance for all the unknowns. Me with patience. Me with an ease in the moment I don't usually have.

This week we spent a few days at my brother's weekend house. I drove there myself—something I'd normally never do. I played catch in the backyard for hours with Jack. I rode Iz's bike to the beach and explored the boardwalk alone for miles. I even played Monopoly with a minimum of complaining. I slept really well. Swung in a hammock with a pit bull desperate to sit with me. I spent far less time online than I usually do. I stopped caring that my hair looked like I'd just exited a wind tunnel. 

And I know, that if tomorrow another wrench gets thrown in the process, it won't throw me this time. We could get a date. Or we could face another unexpected delay.

Either is ok at this point. 

The thumb's up biopsy result is what's now. And that's something to sit with I'm super grateful for.