Saturday, May 21, 2011

timing is everything

Thursday night, as I sat on the aisle and watched Iz run past in the opening number of her middle school production of Grease, I remembered that, months ago, my brother and made a date to be there together. Post-surgery and well on the way to healing. Our first transplant date, 3/21, feels like a lifetime ago.

Yesterday, as a communication misunderstanding led to a transportation nightmare - not a cab to be found in the driving rain, not enough time for a bus ride in traffic to the upper east, that led to 2 subways and a frantic search for affordable shoes on Madison Avenue (Iz's were unwearable by the time we got uptown), all I could be was grateful that the 5/9 date didn't happen. There would have been no way I'd have been able to survive that journey 10 days post-op.

Sitting at the Metropolitan Museum of Art, as Iz's project was honored as best middle school in Manhattan in the Ezra Jack Keats picture book making competition, I was present, fully present, the widest of smiles stretching across my face as my child's creativity and imagination got a huge public shout out. From there we flew downtown for her second play performance during which she had to suffer through and eventually overcome anxiety of mountainous proportions.

The highs and lows of the day were epic. As we searched for a cab to get us home, relief filled me that the 5/23 surgery date wasn't happening. Heading to the operation exhausted would have been a disaster.

This morning, after having had to walk the dogs at 6:30, I'm passing on my favorite craft show in the world to spend time with Jack, who's had to be without me, much of the past few days. And I have to say, he was a trooper about all that's been going on.


All this time I'd been frustrated to no end at every delay. Through a very busy spring I'd spun schedules and scenarios trying to get all the pieces to work, hoping that I'd be post-surgery and would be able to handle Passover, the play, school testing, PTA elections, high school tours, and birthdays while recovering.

But, I wasn't. And perhaps knowing that I could have been living through all this with extra challenges, I've appreciated every moment of the tumult, the craziness, the ups and downs. The joy, the drama, the thrills, the exhaustion. Being fully immersed isn't something I'm usually good at. My head is generally spinning in different directions - keeping me from fully being where I am.

Right now though, I'm here. Grateful, thankful, soaking in, lapping up. Reveling, supporting, celebrating, listening.




And understanding that I can't go into this surgery with regret or angst or frustration. When the time is right, it will happen.

Could be in 2 weeks folks. We'll see.

Tuesday, May 17, 2011

One. More. Hurdle.

I thought we were there. I truly did. I thought all we were waiting for was the round table's final stamp of approval. That's the weekly meeting on Friday afternoons of everyone at the nephrologist's office when current cases are discussed and debated and next steps figured out. 

I figured that last week's positive results meant we were hopefully, finally, in the home stretch. 


Not. Quite. There. 

Yesterday my brother reminded me there's still one more round of blood tests he has to pass, making sure the infection is completely gone from his system. That happens early next week. And so, I'm assuming we won't come up for discussion until a week from Friday. And, the way things seem to work, we won't hear anything until the week after that. Which is after my HIV and hepatitis tests are scheduled for. Looking at my calendar, we'd most likely get the green light the day we've got pre-surgery testing. That is, if anyone gives us an official go-ahead. For the past six months, nothing like that's happened.

I don't have any of those dates on my calendar. I'm keeping those times loosely open, but not putting anything in writing. 

What I am doing is getting quiet. Withdrawing. 

Shutting down.

I've found—now that I'm perhaps actually approaching the surgery for the 5th time—that's what I do. 

I close off. Wall off. 

Stop talking. Stop thinking. 

Just about all I can do is float through the days and hope I'm getting to all I need to.

Only right now I can't do that. This week is cram-packed. I run a PTA meeting tomorrow night, the board election on Thursday at the first night of Iz's play. She's got her awards ceremony at the Met on Friday afternoon (!), with second night's performance directly afterwards. Jon's heading out of town so I'm designated parent at Jack's little league game on Saturday, practice on Sunday and at Iz's first high school tour on Monday. 

Before then I have to order planners and t-shirts and folders for middle school orientation. Get play programs from the printer. Wrap Jon's birthday gifts and get a cake. On top of the usual—pay bills, do laundry, park the car, food shop. Oh, and do all this with cramps that have me doubled around a hot water bottle at the moment.

All this busyness is almost a welcome distraction.


Sunday, May 15, 2011

with thanks to a stranger

Without sounding too non-committal, it seems as if a transplant could possibly be in my near future. Last week my brother passed both the hurdles in his path and as of now, all should be good to go. 

Been here before and this time I'm not jumping on any bandwagons. In fact, we even have a date - I have my pre-testing days on someone's master schedule but none of them have made it onto my calendar yet. 

So far I've been  getting psyched for (and let down from) 3/21, 4/18, 5/9, and 5/23. I've blogged, tweeted, emailed. I've sobbed, panicked, been filled with excitement. This time I'm working at balance. Observing. Surrendering. Being ok with what is. And accepting that it's out of my control.

Being better about sitting in unknown has been one of the silver linings of this experience. Another has been finding some truly remarkably people I never would have known before. I need to give a grateful shout out to someone who found this blog the other day and shared part of her own experience as a donor. 

She got it. The grappling with uncertainty. The inability to let go when you need to be in charge. The responsibility you feel for someone else's well being and the fears that come along with things not working out the way you think they should. 

The drama. The hardship. The relief. The intensity and sometimes insanity of the journey. 

I wonder is she too felt judged. I've been told here, to stop whining, to suck it up. I've been accused of scaring off potential donors with my negativity. I've been called brave, spineless, heroic, selfish. All I can say is that no one who hasn't been in this place can know what it's like. And every single experience is different - for every donor, for every recipient. 

As this new potential transplant date is in the offing, I can see that I'm shutting down. I couldn't meet a friend for coffee yesterday. I had to decline another's birthday party last night. My dreams are getting more vivid, fueled with anxiety. This morning I was in a plunging elevator, desperately trying to maintain calm by deep breathing while the other people in the car chatted away, seeming to not notice. 

But, it's ok. 

I'm trying something new this time. I'm imagining what it'll be like to be on a gurney, being wheeled to surgery. What the pain will be like when I wake up. How bad my hair will look. What I'll feel comfortable wearing home from the hospital. 

And how I'll feel hearing that my kidney is now happily working hard in its new home.