Thursday, April 14, 2011

a straightforward update

Biopsy results are in. And?

More waiting.

Waiting until my brother's gastroenterologist, who's on vacation until next week, can go over the findings and pow wow with his surgeon.

That's it. No drama. No railing against what is. No whining or complaining or frustration.

Just more waiting.

Wednesday, April 13, 2011

donor slam

Yesterday I was slammed, here, by a kidney donor no less.

Anonymous 2 please meet anonymous 1. This new poster accused me not only of whining, but of being exceedingly selfish.

After spinning a response in my head for too long my brother thoughtfully pointed out that this is my blog and there's no rule stating I must post all comments. Thank you bro—I deleted the missive.

This person also alleged that I spend far too much time talking, thinking, writing, pondering, discussing, exploring my experience.

Anonymous 2: I'm a writer. This is what I do. And while you mentioned you'd glanced through a few of my recent posts and deemed to judge me from those, I thought I'd share other parts of my life for those of you who only know me from here.

One of the many hats I wear is stay-at-home mom to kids young enough to be dropped off and picked up from school, to need help with homework, to be read to at bedtime, to be reminded (countless times) to brush their teeth. Any hesitation I have, with scheduling a date for surgery, is based solely on how it will impact them.

Not me.

As a mother, my needs generally come last on the list. Years ago, I wrote a book proposal called "How Many Vacation Days Come With This Job," because I'm on duty around the clock.

Donating isn't just about me and my brother. It affects my entire family. Can I go into surgery the day both my kids will be facing state wide testing - a far too huge a deal in NYC schools? Can I leave them with no parents at home those mornings and trust that they'll be mature enough to stay focused while I'm in the hospital?

Can I be 4 days post-op and handle 2 school plays, an awards ceremony at the Met, house guests, 2 kids, and 2 puppies while my husband is out of town on a trip planned months ago that he can't miss? I can handle a lot, but I'm also realistic about what I can't.

Yes, donating a kidney is a gift of life. I am here because I want to be and have never, for a moment, wavered in my decision to donate. This is one of the single most important things I will ever do. And so is being a mother. It's not easy to prioritize when people need you. It's almost impossible at times to create a structure that works for everyone.

Sometimes whining is the way I let steam off so I don't blow.

All I can do is do my best. And hope those around me know how whole-heartedly I'm there for them.

Tuesday, April 12, 2011

incomplete candor

Sometimes, when reading a particularly telling memoir, I wonder how the writer felt about sharing stories of the dark sides of people in their lives. Not only that, how did they live with the possible wrath of relatives and the enmity of friends whose secrets had been exposed?

I can't do that. I am never completely candid here. I am aware that by putting my words, my thoughts, my feelings into the world in this way, here for anyone and everyone to peruse, people could get hurt if I didn't censure myself. And hurting anyone is never my intention.

Meanwhile here, on this blog, is the most open and honest I am. I don't talk about what I'm going through in the real world. Perhaps, since this donor journey started, I've had 3 or 4 heartfelt conversations about what I'm grappling with deep inside. I can talk about dates and scheduling and testing and the mechanics of it all, but not how I feel.

But, today, I'm going candid. Or at least more candid than usual as I'm feeling more and more like this transplant life and my regular life are on course for a head to head collision. I'm tied to a train track with steam engines approaching from opposite directions and there's no white knight (I suppose a sheriff with a white hat works better for this analogy) to save me from impending doom.

If my brother's tests come back ok (which, as always, I'm hoping with all my heart that they do), the surgery won't be scheduled until May. But I have things in May that I can't miss. A school play. An awards ceremony at the Met. A double digit birthday. Events and celebrations in my family that are once in a lifetime moments.

Meanwhile, the prospect of someone's improved health is in my hands. Well, not really. It's not like I'm performing the surgery. But, it's my kidney that hopes are being pinned on.

How do I tell everyone involved in this process they all have to wait because I have other commitments? How can I live with myself, knowing my priorities are jeopardizing someone's health? But how can I go into surgery, if that's in the cards, not knowing if I'll be able to heal in time to make it to these things that are so important to my family?

How can I possibly put myself first, when staring down such enormous consequences for other people on all sides?

Last night someone accused me of being spineless. Spineless for not whipping out a calendar and making sure everyone on the transplant team took my needs into consideration. Spineless for letting myself be treated like a vessel, not a person. Spineless for not feeling that as a donor I have every right to open my mouth and shake things up.

Here's the deal for everyone who's judging me, condemning me, critiquing me: unless you're in my shoes, you have no idea what I'm going through. To know that a piece of my body could change someone's life, someone I've watched suffer for far too long. To have every fucking step of this process in other people's hands. To have to deal with miscommunication, ineptitude, mismanagement. To be afraid to open my mouth and complain, lest people in charge deem me too unstable to handle this. To juggle my own fears of surgery and what ifs. To still have to function in day to day life through this extra layer that's now a part of me. To hold on to my sanity in the moments I feel it slipping away. To not be speaking to one of my parents at one of the most stressful times in my life. To be as strong as possible for my own family who have their own issues with all of this.

To wait. And wait. And wait.

There is no handbook for this. No rules. No guidelines. I've never done this before and I'm doing the best I can under circumstances unlike anything I've ever experienced.

I'm hoping no one's been upset by reading this. But, right now, I need to put me first.

Monday, April 11, 2011

maybe may

I'm still hanging out in limbo city and I have to say, I've gotten much more comfortable here. I haven't freaked out in a few days. Fighting this cold and feeling under-the-weather have also been an effective distraction. In fact, I'm pretty sure my body gave out to give my mind a break. Or, all that worrying wore down my immune system. 

Either way, I'm napping like crazy and not accomplishing all that much. 

Rather, I wasn't. Yesterday I had an idea for a business that could actually be viable, inspired by all I've been going through. And today I went down my to-do list and checked off as many things as possible, set up meetings, arranged phone calls, made appointments. 


I'm gearing up for surgery. There's just this last test result to get and then we move forward. 


I'm even ok with accepting that there might be more before we get a date.

But, I found out today that no matter what happens, the surgery won't be until May. 

I was hoping to be healed and back to normal in May. May is the start of craziness for me. 2 out of 4 people in my family have May birthdays, which means presents, cakes, and parties (at least one) to arrange. Mother's Day. Both kids have serious testing going on at school. And this year there's Iz's school play. Her awards ceremony for her picture book. Jon has a bachelor party weekend away.

May is also perfect biking weather. 

It's full of delicious taking the dogs to the park afternoons.

It's the start of eating dinner up on the roof at sunset. 

But, what can you do. Maybe May is also a great month for surgery. For healing with windows thrown wide open. For recuperating in fresh air with flowers blooming. 

I'm starting to sound like a Hallmark card so I'll stop before things get out of control.

It's nice though, to be letting go.