life changing change

Yesterday morning, while having coffee with a friend, we spent a lot of time talking about potential change. Going back to a conventional job versus staying home with kids, what that juggle might be like, how we felt about where we are, where we could be, where we should be. And then, as we were walking home, we ran into another friend who looked stricken as we said hello. On the verge of tears. She'd found out the day before that her best friend had breast cancer.

Boom.

The trajectory of that woman's life changed in one sentence. Nothing would ever be the same. Out of nowhere she, her husband, her kids, her parents, her support system were plunged into the unexpected, the unknown, a dark, scary place where there were no guarantees everything would be ok in the end.

To be honest, no one can ever know all will work out but we live (or at least I do) in this place where we can pretend to have control. 

We don't. Not really. 

Not at all.

Another friend of mine lost his apartment this week. The recession hit him hard and he can't afford to keep his home. After years he's starting completely over. He'd tried, for too long, to maintain that everything was fine while his foundation was being worn out from under him. 

I too, am standing on a precipice. It's not coming out of nowhere—I'm choosing this road instead of it choosing me. No, actually, it's not that black and white. I'm not choosing this out of nowhere. I'm choosing it because I have no choice. There's no way I couldn't give my brother a kidney. Put more plainly, of course my kidney is his. 

Of course. 

But this road is fraught with unknowns. My first physical is next week. It could be that I'm a relatively healthy 46 year old. It also could be that there's all sorts of stuff going on in my body I don't know about. Yet. But soon I will. And after all that gets sorted out, once I have the green light to move forward, once we're tested and matched and tested again, once we're in the hospital and prepped for surgery, I still won't know. I won't know until I wake up whether I'll have one kidney or two. My brother's body is so compromised they won't know until they open him up whether he'll have room for a new organ.

All this could lead to nothing. Or a life, two lives, could be drastically, dramatically changed. 

Whew. 

Life smacks you in the head sometimes and leaves you reeling. But, still, it's better than the alternative.

reality settling in

I just woke up. At 10:40. For the second time today. The first go-round I walked the dog, got 2 kids out to school, threw in 4 loads of laundry. Answered email, waded through paperwork, hit the bagel store, then hit a wall.

I didn't sleep well last night.  Could be the stress of getting off a ship on Sunday, traveling home, and then plunging back into back to school and the rest of reality without a buffer. Could be the mellowness of steam rooms and massages and staring at the ocean wearing off.

Could be the voicemail I got from the transplant coordinator yesterday about next steps. I've had a week and a half or so to live with being a match—from a purely conceptual, not examining or looking too hard at the big picture, all is great. Exciting, enervating, gratifying. But I'm thinking her message popped the tiniest hole in my transplant bubble.

Next up is a comprehensive physical with my soon-to-be nephrologist. A quick aside: Last night, when updating everyone about the day, we had quite the enlightening discussion about necromancy and necrophilia, not that either are related to my kidney, but it was a good starting point for illuminating conversation.

By the end of today I should have my next appointment set up. Way up town. A full work up. More blood tests. A revisiting of every medical issue I've ever had. There haven't been many, thankfully. But I'm not a fan of going over things that went wrong.

There's a part of this that's revving my anxiety. My deep-seated, life-long, so strongly a part of me that it defines me fear that something terrible could be wrong with me. And then what?

Shit.

I'm trying so hard to take this in stride, to hold on to the positive, to keep my cup brimming.

But I'm scared too. Not even for the transplant part. For what they might find before.

There's a comfort in being oblivious. Less to worry about (although in my case I worry anyway).

Shit.

There's so much I could/should do to distract myself, to stay busy, to accomplish. It's a new year and usually I hit the ground running with goals.

Right now though I just want to curl back up under my blankets.

3 out of 6

I just found out today my brother and I are a 3 out of 6 match in terms of kidney compatibility. What does that mean exactly? Or even vaguely?

I have no idea. None at all.

Having said that, I was seriously disappointed at not having been a better match. I was hoping for at least 4 out 6.

Which apparently isn't possible. It's either 0,3, or 6.

Even so, I felt like I had failed somehow. Not done enough. Wasn't as good as I could have been.

It's not like this was a test I could study for. No cramming would have made any difference. My own expectations got in the way of what was realistic. Or even possible.

And that is something I have to let go of. This process is going to be long and mostly out of my control. Being a match at all is wonderful. Going forward it's got to be one step at a time and being able to accept what is, not what I want it to be.

giving

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.

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.

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.

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.