Friday, March 11, 2011

sometimes dreams don't come true

Today is feeling like one of those best/worst of times days, which warrants my first ever double kidney post.

The surgery's been postponed. The 21st is not happening. The 28th is a distinct possibility. Seems like, should pieces fall into place, April is going to be it.

My brother has a follow up visit to a hematologist in 2 weeks and from there, we figure out next steps.

He had to make me feel better about the whole thing.

I know. How much of an idiot can I be? He's the one who's not well. He's the one with the tube sticking out of his chest, the dialysis sessions that last for hours, the more complicated recovery to contemplate. He's the one who should be feeling frustrated, pissed, let down, aggravated.

Instead, he went out and bought us vegan chocolate cupcakes.

Me? I was numb for most of the afternoon. For someone who is remarkably adept at figuring out how I feel, I've been frozen. This week, finally, I was getting comfortable with the actual transplant. Meeting the surgeon helped make it both real and accessible. The anxiety that's been surrounding the surgery was quieting a bit. I've been talking and tweeting and writing and sharing. Preparing for the reality of it all.

Plus, I dreamed this.


I loved that months ago the transplant date appeared in my dream. I loved that it was coming true. I loved the synchronicity, the forces of the universe putting the puzzle together.

Only, the pieces aren't fitting anymore.

So much for my psychic abilities.

So much for thinking I had any control over any of this.

I feel lost. Aimless. I don't know what to do with myself.

Intellectually, I know this is for the best. He needs as many balls in his court as there possibly can be. That his team is being so responsible, so attentive, so concerned, is a bonus.

I am exceedingly grateful for all this care and consideration.

But I'm still wallowing.


Life has been kidney-centric lately. Even if things aren't related to the upcoming transplant, they are. 

And so is this - at least where the story starts is. 

I was weighed at the surgeon this week. The last time I remember being weighed was while I was pregnant with Jack. I haven't owned a scale in years. They are dangerous to anyone who was or is anorexic. Back in the day I'd weigh myself as soon as I woke up, before and after every meal, before and after every trip to the bathroom. With clothes. Without clothes. Just my clothes. It was a painful obsession and that number would drive me to the edge of insanity. 

The doctor had me hop up on the scale. The slider kept sliding. To the right. It finally balanced out at 142, more than I thought I weighed. More than I've ever weighed except when there was a baby growing inside. 

I took a deep breathe. And discovered I was ok. 

Well, sort of ok. As soon as the doctor left the room I pulled my boots off and threw them on the scale. 4+ pounds. I figured my jeans and underwear brought that figure up to 5, so I sat with 137 for awhile. 


One hundred and thirty seven pounds. 

I used to viciously berate myself for being more than 125. More than 120. At my skinny skinniest I was 103. 

Yes, I was psycho. My hair was coming out. My feet were always numb. I had almost no immune system to call on. I lived on diet pepsi and tasti delite and salad. 

In the past, seeing 137 would have prompted hyperventilation, an anxiety attack, a 2 hour trip to the gym, days of extra starvation, hours of beating myself up in my food journal. 

Now? I am so fucking proud of my body. Proud that at soon to be 47 I've withstood this scrupulous donation testing and came out on top. And in the real world my pants fit. It doesn't take me 2 months to heal from a cold. I have energy. I wear bright colors. I can do a headstand in the middle of an empty room. And if my belly's a bit gushy and my knees are starting to sag and the line in-between my eyebrows resembles the Grand Canyon, I'm ok.

I am grateful to my body for all it does. And I'm grateful to my soul for all the growing and healing its done. 

Thursday, March 10, 2011

the stalled race

I've never run a marathon (and can honestly say I never will) but I'm thinking this donation experience has been something along those lines. Nervousness, excitement, plodding along when you think you can't anymore. 

Moments when you want to give up. 

Others of pure exhilaration. 

Meeting the surgeon felt like getting to a much-needed, well-stocked water table. 

But this? A tree fell across the road, blocking all movement. And electrical wires are tangled in its branches so there's no way over or around. We're waiting for firemen to come and assess the 
situation. For people from the parks department to clear the scene. 

Who knows how long that will take. 

I'd finally hit my stride. I had such momentum going. I was healthy, relatively calm, had worked out childcare and puppy walking, navigating school plays and test prep and work deadlines. 

Now? I'm sort of shaky. Adrenalin's pumping with nowhere to go. I'm full of nervous energy. Negativity's creeping in as my purpose, my goal, my plan has been abruptly halted. 

Instead of 11 days until the transplant there's now a giant question mark hovering over the entire thing. 


But the flip side is learning to live in what is. 

We'll see if I can. 

Wednesday, March 9, 2011

glitch in the road 2

Yesterday I met the donor surgeon for the first time. After an hour and a half I walked out of the transplant office more comfortable and confident than I've ever been about this entire experience. He was thoughtful, knowledgeable, patient—he started by reviewing my entire medical history (by now I've done this almost too many times), did a physical exam, and then answered all my questions, all Jon's questions, and continued fielding the many that kept coming up until we actually said good bye.


  • the diagram he drew of my soon-to-be incisions
  • when he said "donors do better" in terms of longevity and health (I'm holding on to that one hard)
  • how impressed he was that I gave birth with no drugs
  • that immediately put on the transplant button I gave him
  • the fact that he said, over and over, his first priority is to keep me safe and healthy

He was my last hurdle and he officially cleared me for surgery. He then said 21st was only a tentative date, that things weren't settled with my brother yet, that once that day was concrete someone would let me know.

That's all he knew. He had no more information.

I texted my brother as we left the building.

"Call me" appeared back on my phone in seconds.

The conversation was garbled (screw you at&t) but before I got on the subway I gathered there were issues from the test he'd had last week but he hadn't heard back about what came next.

The mom in me took over. I called my coordinator and asked/begged her to please have someone get in touch with him. She is an angel. He got a call seconds later.

When we got back downtown I learned that for him, next up is a hematologist. There are concerns about bleeding. And then possibly a liver biopsy. By the end of the night it was pretty clear the 21st is not happening.

The transplant isn't off, it's just most likely postponed for the moment.

My brother apologized for me having to wait.

I wish I could apologize for the extra suffering he's going through. I wish I could take away the uncertainty and the doubt and the unanswerable questions. I wish this was going more smoothly.

I wish this didn't have to happen at all.

I wish he could be well.

But since this is where we are, I wish I could guarantee he'd be fine, that this kidney would last 30 plus years in him, that the surgery would be uneventful, that recovery would be a breeze, that we'd grow old together laughing about Sidney and Ida (we've named mine that as a nod to some lovely cousins of our mom's).

Sadly, none of the above are possible. What I can do is I can be a cheerleader. Send silly texts. Tell distracting stories. Keep things light and breezy (I excel at this). But deep down, I'm begging/praying/hoping/pleading that this is the last glitch he has to encounter.

And I can ask everyone out there to hope beyond hope this path evens out and Sidney gets to continue his journey as soon as he possibly can.

(insert your prayers here)

Tuesday, March 8, 2011


Today I'm meeting my surgeon. This is a first - I've never had surgery before hence I've never had a surgeon. I've met surgeons. My best friend's father when I was growing up. Various people at parties. But no one who would be slicing into me in the near future. 

A quick aside: I'm very queasy. I couldn't do animal dissection when I was in junior high. I've been a vegetarian for 20+ years
I'm a firm believer that anything inside a body isn't meant for me to see. 

I'm nervous. Which has been happening a lot lately. This isn't just low level anxiety. This is my entire abdomen clenched and churning. My teeth grinding. My lungs constricted. 

This is fear. 

Fear of the unknown. Fear of a stranger slicing into me. Fear of being chemically knocked unconscious. Fear of not being in control. 

I love being in control or at least the illusion that I am. And while I've learned to ease up on that in a major way, stress ramps it way back up again. Which is a huge mind fuck because the angst is about situations completely out of my control. It's a classic lose/lose situation. 

I haven't found my way around that yet. Although I do know there is no way around. I have no choice but to live it. To get through it. To feel what I feel and know that I'll be fine on the other side. 

Sometimes though, I lose track of the other side. 

Oh. Maybe it's not waiting to get there to be fine. Maybe I'm fine here, underneath it all. 

Or maybe it's not a matter of fine. Maybe it's learning to live in it is what it is. 

Monday, March 7, 2011

why am I doing this

Giving a kidney away is quite the conversation starter. I suppose, in the day to day world, it's not something you come across often. I've never met anyone who's even contemplated this. Until now.

People have been incredulous. Shocked. Worried. Have felt sorry for me. Have called me a hero. Some have tears in their eyes. Others shake their heads at how stupid I am. Some have been outrageously supportive. Others have disappeared.

I have 2 weeks left of being a potential donor and when all is said and done I pray (hear that universe? yes, I'm praying) that "kidney donor" will be a part of what I've done, who I am.

I pray that this will work.

I pray that my kidney will fit, that the hook up goes smoothly, that it has a long and healthy life in its new home.

I'm praying. So damn hard.

How often in life do you truly get to help, to give hope, to make a difference?

People ask how can I do this?

But the truth is, how could I not.

Yes I'm scared. But I don't have doubts. Not that over the next two weeks I won't be all over the emotional map. I know me. There will be train wreck moments. I will be freaking, sobbing, panicking. I will second guess. I will fall into my black hole and there will be times that I won't see the way out.

But I love my brother. And I know deep down this I what I'm meant to do.

Sunday, March 6, 2011

going negative

I got my transplant buttons in the mail yesterday. Even though the image I sent looked great and the copy I printed at home was fine, the actual product?


And that plunged me into a really dark place that I can't get out of. 

If I can't do buttons right how can I do this transplant?

There was a moment or two when I actually considered giving up and saying I couldn't go through with it. 

I know, though, it's not about the buttons. Nor is it about my fear that no one will come visit me. I imagine my brother with a constant stream of friends stopping by while I'm alone in a corner, listening to feeling-sorry-for-myself songs on iPod. 

It's not about how disinterested much of my family is in what's going on (although, to be honest, it hurts). Yesterday, at a gems and minerals show - just about the geekiest place I've ever been - I asked one of the dealers about healing stones, sharing with him that I was about to give a kidney away and I was garnering as much strength from as many places as I could. 

His eyes closed and he went into sort of a trance, rocking back and forth. It was unnerving - Iz walked away. When he finally came back he showed me the goosebumps on his arms and blessed me, tears shining in his eyes. the woman next to him hugged me, thanking me for what I'm doing. 

All I could do was smile and be grateful for those kind thoughts. 

Meanwhile, back on the home front, one of my parents isn't talking to me. 

Here's another thing I'm afraid of: what will I do when this is over. This transplant has taken over my life for the last few months and soon this chapter will close. Then what?

I'll be starting from scratch, for yet another fucking time, trying to figure out which way my path is heading. 

What I really want is someone to sweep me away and take me to a beautiful beach somewhere so I can find peace and ease and space. Instead, I'll be hosting Passover, making costumes for a middle school play, dealing with tutors and test prep and PTA elections and taxes and summer plans and high school tours and puppy training. 

I feel like if my buttons had been perfect I could've put a different spin on all of the above. I would have seen that I can handle things, make them happen, control what's going on in my life. 

But today, I can't.