Saturday, December 25, 2010


Last night I was at my brother's for Christmas Eve, a sibling family tradition that goes back for years and years. It was the first time we've seen each other since we got the good-to-go donation news and we celebrated in our usual laid back style: a high five. We're not demonstrative or overtly mushy—but it was a heartfelt hand slap. He then said, "Thanks. And I'm sorry."

He's been saying he's sorry since he first asked if I'd be tested. That's a family tradition too. I suppose its roots lie in jewish guilt but I'm sorry comes as easily out of our mouths as good morning. I apologize for not throwing a frisbee well, for my apartment being too messy (it's generally pretty neat), for not being as on top of things as I should.

As we sat in the transplant office, waiting and waiting and waiting during our initial visit, he apologized profusely. A lull in the conversation? I'm sorry filled the space. As we waited and waited and waited to have blood drawn (we ended up coming back the next day), he texted sorries too, even though we were sitting next to each other. I'm sorries for the delays, the far away doctor's office, the potential donation road I was contemplating, the traffic, the parking. Huge or tiny, he's sorry.

I asked him to please stop. I was there because I wanted to be.

And now I know, after getting the good match news, I'm here because I'm supposed to be.

I have been blessed in my life with amazing things. I am amazed, just about every day, at where I am. I have been married for 22 years to someone I'm still delighted to see every day. We both came from divorced homes and forged something as unbreakable as we possibly could. We brought kids into the world who are thoughtful, wise, challenging, delicious. We live in a lovely apartment in a fabulous neighborhood in NYC. I've worked on project after project that thrilled me. Wrote my dream book and put it out into the world. Had experiences I never would have, could have imagined. After so many years of being heart-breakingly lonely, of anorexia, crippling anxiety, insane self-doubt, I have extraordinary friends and an extended family I'm just getting to know and appreciate.

I am grateful for all that my life is.

And even more grateful that I can give something back.

In a bigger, more spiritual way (not that I often think that way so forgive me if I sound too hippy dippy), I feel like the universe brought me to this point. My time is relatively free, my schedule is open. My bike fall last fall taught me that I can go through pain and injury and heal to be just as strong as I was before.

From another point of view, what's the point of being here if you can't make an impact, a difference? We're on this planet for a very short time, and I'd rather mine be constructive than wasted. Having said that, I can spend more time browsing etsy and ebay than anyone should.

Jon, my husband, said years ago if you have a choice to do something or not to do it, always choose to do. That way you won't wonder or regret or live with what ifs. Way back when that was almost impossible for me to contemplate but it's become something that now comes far more naturally.

This is one to do that I wouldn't miss for the world.

No matter what happens, I'm thrilled to be on this journey. I know it will be hard, scary, anxiety-provoking, stressful, irritating. I know I'll be freaked out and second guessing. I know I'll be scared.

That's life. That's the journey. My journey.

No apologies necessary.

Friday, December 24, 2010

Lewis and Clark

This morning, while in the shower (the place, more than any that ideas come to me), the idea that my kidneys needed a bit more personalization popped into my head. One of my favorite yoga teachers somewhat recently underwent a double hip replacement and she named her new ones. They'd been through a lot together and I suppose she felt the need to acknowledge that.

I get it.

My kidneys are about to be seriously scrutinized and if all goes according to plan, one won't be mine anymore.

The name Kent came first. I suppose it's the K connection. That didn't quite work but Clark Kent spoke to me. An innocuous individual who's secret identity helps people? I was moving in the right direction. But Clark Kent is one person. I thought Lois and Clark, as they're a known pair, but one was always in trouble while the other did the rescuing. Not an analogy I wanted to emulate. And then I hit on Lewis and Clark. Two explorers. Two adventurers. Scouting out situations that were new and different and unknown. It was all uncharted territory. Testing themselves. Pushing their boundaries. Discovering what they were made of along with the world at large.

Lewis and Clark works for me. Lewis is my left kidney, the one that will most likely be moving. Clark, on my right, will be the stay at home kidney. But what an adventure the two of them will have.

Stay tuned.

Thursday, December 23, 2010

initial results are in

I'm a match.

I found out about an hour ago. There was a voicemail on my phone from the transplant coordinator saying that all looked good and we'd move forward in January.

I'm a match.

I started shaking and couldn't listen to the end of the message. I'd been hanging out with a friend and I had to go back, not sure I could get home. Or walk. Or keep standing up without falling over.

I'm a match.

Tears burned slowly out of the corners of my eyes as I told my friend the news I'd just gotten.

I'm a match.

And I felt relieved. Tremendously relieved. A twinge of happiness with a twist of disbelief thrown in.

I headed up the street and called my brother, who didn't answer his phone. I texted. I called again. I wanted him to be the next person to hear the news.

I'm a match.

But, we're not quite sure exactly what that means. We both called the office back only to get a message saying no one would be available until next week. So, at the moment, and with copious online research I know our blood types match, there are no antigen issues, and we're a cross match, meaning his cells don't react adversely to mine. January 3rd I start setting up more testing.

I have to go through a rigorous physical to make sure that all is good and that I can withstand surgery. There's an EKG, chest x-ray, more bloodwork and urine tests. A mammogram and pap smear. Eventually a CT scan of my kidneys with that injected dye. If anything turns up during any of these tests . . . more tests. By the end I'll know exactly going on inside my body. There's also psychological counseling which unnerves me a bit more. I'm just hoping anxiety doesn't get the better of me.

When I told Jack he jumped up and down and gave me endless high fives of excitement. Iz's face stretched tight with a huge smile and then she hugged me, hard, and told me she'd be with me through the whole thing.

My family is amazing.

I am grateful.

I'm a match.

And I'm super grateful for that too.

Monday, December 20, 2010

2 weeks

Tomorrow it'll be two weeks since I left 6 vials of blood to be tested.

They said it would take two weeks to find out if my kidney is a match.

The math isn't hard.

I'm hoping to find out. I'm hoping I'm a match. I'm hoping things move forward.

Thursday, December 16, 2010

dreaming the future

I dreamed I was a match.

I dreamed the surgery was scheduled for 3/21. Actually, they booked it for another day and I reminded them all transplants happen on Mondays. So we checked the schedule and moved it back a few days.

Here's the freaky part. I woke up, checked my calendar, and 3/21 really is a Monday.

Nothing like that ever's happened to me before. My dreams are almost always anxiety-based and take place either in my home town of Massapequa or on a cruise ship. Whatever the locale, I'm always trying to get somewhere and can't. There are no dates, no times, no numbers, no logical conversations. No practicality. No real life references.


I'm still having a moment.

Tuesday, December 14, 2010

listen up universe

Here's the deal. I want to be a match. A good match. A solid match. Not a straddling the fence maybe-yes-maybe-no match.

I want to be able to help.

I want to be able to hope.

I want to be able to do something constructive, positive, tangible.

I feel like, and maybe I'm reading too much into this, that perhaps the space in my life right now is for this. Was anticipating this on some level. Is allowing me time to do this.

So I'm hope hope hoping that next week's results mean I'm not done yet.

Sunday, December 12, 2010

good luck charms

Today I got to the BUST craftacular—a super cool, annual hand-made crafts expo—at 9:15, waiting, in often pouring rain, for an hour before getting in. But, I was with 3 of my favorite friends who happen to be the mothers of 3 of Iz's best friends so the grey day didn't put any sort of damper on anything.

Once I got in, I wandered, often by myself, through aisles and aisles bursting with creativity and expression.

It was stunning. And daunting. I was blown away, over and over, by the originality on display.

And yet, I bought nothing. No, not quite nothing. I bought amazingly perfect holiday gifts for people in my family who are impossible to find things for (should they be reading, I won't mention here what I found).

But nothing for me.

The older I get, the more comfortable I am in my skin, my life, the less I want.

I never thought that was even a possibility, but here I am.

Having for the sake of having doesn't work for me anymore.

Having said that, acquiring for a significant reason is still totally justifiable.

I realized what I want, what I need, is a good luck kidney charm. Something to wear all the time, to remind me to be present, to be strong, to stay grounded in this experience.

I was then on a mission.

There wasn't a kidney inspired piece of craft to be found. Fortunately, it doesn't have to be quite so literal.

I am now on a quest.

Having something like this to focus on helps me not get stuck in the dark places I could go with this. Like, for right now, what if I'm not a match. I'm gearing up to do this and in the next 2 weeks I could easily find out my journey is over.

I don't want to even consider that.

So searching for my charm was, is, what's going to help get me through the now.

I'm off to etsy . . .

Friday, December 10, 2010


This potential donation isn't a decision. It is what is. If I'm a match then we move forward. Anxiously of course - that's my default mode. But I go as far as I can.

There were a couple of days over Thanksgiving when I grappled with it all, until I realized I wasn't sure what the grapple was about.

I breathed easier after that.

Reaction from others though has run the gamut. There's been support, incredulity, fear, sadness, shock, disbelief. People are proud of me. Touched by the gesture.

One person asked how could I do this knowing my kids might need a kidney one day.

Another wondered if I'd sat down and thought through probability of success charts.

My mother was fine about kidney but horrified that I wanted to commemorate the experience with a tattoo. This morning I thought a lotus by the scars could be cool.

My husband offered to be tested if I'm not a match. Amazing.

But yesterday I ran into someone who turned the whole thing upside-down for me. She asked if I was working on a new book and I explained that this was my project of the moment. Her eyes lit up. She exclaimed: how cool! And what a profoundly life changing experience this would be for me.

I LOVE that.


Her take gave me a whole new perspective. I'm finding out what I'm made of. I'm throwing myself into something unlike anything I've ever done before. I'm proud of myself for moving forward and not letting myself be frozen by what ifs.

Thank you Annie. You gave me a huge gift today.

Wednesday, December 8, 2010

straddling the fence

From this vantage point, waiting for blood and tissue type matching tests to come back, both possible outcomes are good and bad.

And that's not easy to sit with.

Should I be a potential candidate, we move forward. More tests. More scrutiny. More information. With surgery as the end result.

Should I not be a match, my part in this is over.


I wouldn't be doing this if I wasn't hoping beyond hope to be able to be a donor. But there's so much that comes with this, it's next to impossible to grasp it all.

I want to help. But I'm scared.

I want to know all will be fine in the end. But that's not possible to know.

I want my brother to be ok. But there are no guarantees.

And I want me to be ok too. That's also up in the air.

To have come this far, to have made this decision and commitment and then have the door shut tight would be frustrating. But, to be honest, it would be a relief too.

I would know. And could then move on.

But should the answer be no, I'd have to live with not having been able to help someone who truly needs it.

And that's tragic.

Right now I'm up and down, excited and nervous, hoping for good, anticipating bad.

Only I'm not quite sure exactly what good and bad are anymore.

Tuesday, December 7, 2010

giving up a piece of me

I've been thinking that there's something about donating a kidney that's not unlike being pregnant. Lots of tests. Lots of waiting. Many unknowns. The reality that things could go tragically wrong (I tended towards anxious while I was pregnant). The unrelenting hope that all will be uneventful and everything will be fine in the end.

Both require hospitals stays even though you're not sick. Both have periods of serious pain. Apparently both leave you with more abdominal gas than you should have. There's recovery time afterwards to contend with. the possibility of complications.

And in both you're losing a piece of yourself, something your body sustained and nurtured. Even though pregnancy is temporary and the being inside you isn't a part of you the way an organ is, it's an intrinsic part of you while you're its home.

And once this piece of you leaves, you want health and ease for it. You want to do everything within your power to make sure its ok.

No, I won't be able to take care of my kidney in its new home. It won't be mine anymore. But I'd want it to have a long, strong productive life. To make things better for my brother. To help systems work, to increase vitality, to re-energize his insides. 

The thought of a kidney shower just popped into my head. Should all go through, maybe a big party at the end would be just the thing. 

Or my Japanese cherry blossom tattoo.

Monday, December 6, 2010


Today was my first visit to the kidney transplant office.

I'm sort of numb.

It's a lot/too much information to process and when confronted with situations like that I shut down.

I'm shutting down.

I feel quiet. Small. Lost. Out of my element.

As I sat with the transplant coordinator, who was bubbly and charming, I was often at a loss for words, something that rarely happens. This is all new to me - the procedures, the tests, the vocabulary. I've never had an operation. Never recovered from anasthesia. Never confronted the possibility of being checked so thoroughly.

Her office had a huge wipe board on wall, listing patients and donors, keeping track of where each pair is in the involved pre-operation process.

I'm going to be on that wall.

I only hope I can handle this. Emotionally, psychologically. I remember this inner, low level doubt creeping in before I gave birth - was I strong enough, could I deal with everything it, would everyone be ok?

I'm not a taking chance sort of person, at least not when it comes to physical things. I will never helicopter ski or sky dive or ride a motorcycle. And this feels like jumping off a cliff in a way, without knowing what's down at the bottom.

But, this isn't just about me. Taking a leap into the unknown to help my brother makes all the difference.