Saturday, March 5, 2011


I am not one for symbolism, or at least I haven't been in the past.

Until now.

Now? I'm amassing as many good luck charms as I possibly can to let the universe know I'm not kidding around—I want this surgery to be all that it should be. Successful and easy with reasonable recoveries and healthy, long lives for all involved.

It started at Christmas/Hannukah. I bought me and my brother matching elephant bracelets strung on red cords. I wear mine all the time and have recently discovered he's been wearing his too. As the surgery's getting closer I've decided to make more of them for people close to us. I've been searching, obsessively, for just the right elephant charm for weeks. Finally, this morning, it appeared. Turns out the google search I needed was "silver vintage elephant button" and the perfect image popped up.

I'm making 18—a lucky number in Judaism. It represents chai (forgive my spelling), the 18th letter of the alphabet which represents life. I'm all for that. And so, today, I'm heading to the bead district to see if I can find these charms in person, along with cord and clasps.

Or, I could pop over to a gem and mineral show to search out even more gemstones with properties that might help. I know nothing about this but at the moment am sleeping with 12 or so rocks under my pillow, each supposed to help with either kidneys, or healing, or anxiety issues. Yesterday Iz put together a master list for me of what I need and we went rock shopping. Another thing on my to-do list is to crochet a pouch in the shape of a kidney to carry them in.

I'm (seriously) not kidding about that one.

I'm not one for praying and yet I'm asking everyone I know to send all positive thoughts, good wishes, healthy intentions in our direction. I blog here. I started a Sidney's Big Adventure fanpage on facebook. I tweet about the transplant all the time.

I designed a transplant logo and ordered buttons. My brother's having the logo put on t-shirts and mugs for the hospital team.

I've started working on a show based on this experience with a dear friend of mine.

I've got a list of things to bring to the hospital: photos of my family, the pups, a buddha statue, pink and purple mardi gras beads, a lava lamp, a needle felted ganesh Iz made for me, my bag of gemstones, rocks and shells from the beach . . . I'm sure plenty more will be added in the next couple of weeks.

Intellectually I know these objects won't really make any difference. But searching, making, shopping, planning is helping ease my anxiety right now. And I could use as much of that as possible.

Friday, March 4, 2011

there are no guarantees

Last night I found out a dear friend of mine, Jon's best friend, died.

He was the best man at our wedding. He was 3 days older than me. He has two kids, one the same age as Jack.

We were going to spend time together at the beach this summer.

We were supposed to see him two weeks ago but plans never came together.

The funeral is today.

I can't go.

I can't go because it's in Philly and I don't feel comfortable being so far away from the kids. I can't go because they have doctor appointments this afternoon, because Iz is now home sick, because who will walk the dogs.

But deep down, the real reason I can't go is that right now I can't face death. I can't sit, in real time, with devastating disease and what can happen when you don't expect it.

E had multiple myeloma and had just undergone a bone marrow transplant—we thought he was doing better. I heard from him a few days ago, he was wishing me well with my own transplant journey. And then an infection struck and he died in the hospital, 2 days after not feeling so well.

At the moment, it's not real. I can't cry. I can't feel it. I can only pack up that pain in a little box and shove it in the back of my emotional closet for now.

I need to hold on so fucking tight to everything being ok, that all will work out in the end.

There are no guarantees.

But for me, for right now, I'm hoping, praying, begging the powers that be, that my brother and I will both come through this and be fine.

Thursday, March 3, 2011

angry ranting

Before heading to yoga this afternoon I was in the middle of a pissed off post. It was accusatory, angry, hurt, twisted. I was having one furious moment.

I'm finding these days that my emotions are intense and flow through me like fast moving storm systems. I'm full of love, contentment calms me, anxiety revs up, frustration blackens my outlook. All in very short periods of time.

So, I was stuck in angst. It was for a very valid reason. But, it was because of someone else, a situation I have no control over.

I can't change that. I can't change them.

What I can change is how I deal.

(bear with me folks, I'm just working this stuff out as I write)

I used to define myself by things that happened to me: my parent's divorce, my eating disorder, my battles with anxiety.

And then, as I started owning my stuff more I became what I did: the books and projects I took on were all that I was. Motherhood became part of that too.

Now though, I'm learning how to be me. To live comfortably in my skin. To live without self-imposed adjectives. And to let go of other's negative actions and behaviors and words that break me down.

At least that's my goal.

I'm not there yet. Awareness though, is the first step.

I'm hurting because someone I feel should be sharing this profound donation experience with me, cut me out of their life recently. And that sucks beyond words.

Instead of wallowing in it though, sitting in blame, stewing in finger pointing, I'm working on letting it go.

It is what it is.

I'm surrounded by such love from so many other places. Just as importantly, I'm finally appreciating myself.

What a waste of time and energy to focus on the hate.

Wednesday, March 2, 2011

transplant branding

Getting a date changed things. It's really happening. It's not conceptual anymore. I'm meeting the surgeon next week. We've got pre-admission testing lined up. 

My head is spinning and I'm grasping at ways to stay grounded.  I need to be busy. I need to create. When overwhelmed by things too huge for me to handle I go to what I know. And so, this transplant has a logo. I've already ordered buttons and I think mugs and t-shirts will be happening as well. 

The transplant's color scheme is red and purple (my brother would like to add yellow, as a nod to pee—I'm not completely on board with that but as it's his experience too I'm staying open).

I'm making a book of everyone's good thoughts and wishes to bring to the hospital. 

I've thought a sort of altar would be nice to have in my room. I'm thinking a lava lamp, mardi gras beads, a buddha and some flowers (in appropriate colors) will do.

I'm putting together surgery and healing playlists.

Yes, I know this is all ridiculous, but it's helping me move through the unknown. 

And today I got the greatest compliment and thank you one could ever imagine. My brother said he's thinking about getting a tattoo of the transplant logo to commemorate one of the most important things he's ever gone through. 

Know what universe?

In the midst of craziness, life is good.

Tuesday, March 1, 2011

different points of view

Tonight I talked to my brother about the surgery and how differently we're approaching it. He seems rather mystified by my alternating positivism and anxiety while I can't grasp his comparing the experience to finding a good auto mechanic. 

He's had over 20 surgeries in his life. 

I've had none. 

He lost his first kidney at 9 months. 

I'm giving one away 3 months before my 47th birthday. 

He's known all his life he'd need a new kidney. 

I never imagined volunteering to be put under and sliced open. 

And there, I think, is the difference. 

He has no choice. 

I do. And I'm choosing this. I'm choosing to give away a piece of me. To have anesthesia for the first time. This will be my first major scar, my first planned hospital stay. I've given blood and pee, I've been tested over and over. I've been questioned and challenged in more ways than I could have imagined. 

I am confronting a list of what ifs that a healthy person shouldn't have to face. 

He and I are coming to this shared experience from such different places. 

It is what it is. And I have to be ok with that.  

feeling too much

One post a day right now can't possibly capture this experience. My moods are shifting so hard and fast I can't keep up - it almost feels like being I just inhaled 5 double espressos. 
I'm racing. Frenetic. Can't focus on anything. I went out for bagels this morning and ordered the wrong thing for Jon even though he always always always has a toasted everything with cream cheese. 

I can't breathe. 

I can't calm down. 

Last night I survived an anxiety attack but just barely. 

Next week I meet the transplant surgeon. The week after is pre-op testing: more cross matching blood work, EKG, chest X-ray. 

I don't have a bathrobe to bring to the hospital. 

I have a not-even-close to being trained puppy in my apartment. 

I can't find my laundry card and piles are piling up. 

I made a master to-do list this morning of all I need to take care of in the next 20 days. 

I have to finish my will, find a tutor for Jack, host a PTA meeting, make arrangements for the kids while I'm away. There's the dermatologist, dentist and waxing for me, haircut for Jack, shots for the new puppy, grooming for the bigger one, the orthodontist for Iz. 

I have to find elephant charms to make good luck bracelets for people to wear while we're in surgery. 

I'm having the most monstrous menstrual cramps right now that are just about doubling me over. 

My stomach's in knots. My hands are on the verge of shaking. 

I think I'll have tears burning at the back of my eyes from now on. 

And sleep is almost impossible.

I'm wishing I was that woman in the Calgon commercial and it was just as easy as taking a bubble bath.

And I'm hoping that yoga and dancing on the heads of my demons (in this case anxiety) will help.

Monday, February 28, 2011

something out there is moving these pieces

This morning I went back into my kidney blog archives to see exactly when it was I'd dreamed the transplant would be 3/21.

I dreamed it back in December, two weeks before I even found out I was a match.

At the time, the dream blew my mind—that when I woke up and checked my calendar, the 21st was in fact a Monday, the only day they do transplants on.

And from the vantage point of today?

Speechless doesn't cover it.

Not to sound too space-agey, but someone, something out there is helping put these pieces together.

We've still got a ways to go. Hopefully nothing will come up during the next 3 weeks. We've got more blood tests, EKG's, x-rays to get through. Then there's the actual surgery, whether my kidney will fit into my brother, and should it, will it work once it's hooked up.

But, we've made it this far. I'm a match. There were so many times and ways this process could have ended before and we're still on track.

As the waves of panic, doubt, fear, anxiety wash over me, I'm holding onto that this was meant to be.

I believe that from the very bottom of my heart.

This was meant to be.

And all will be fine in the end.

Sunday, February 27, 2011

staring down the dark side

Anxiety has moved in. Without an invitation. It showed up yesterday and I'm thinking we'll be together, nonstop, for the next 3 weeks.

I know anxiety well. We've spent much of my life together. But now that I know what life is like without its constant presence, it's more intense when it shows up.

The clenched teeth, pit in my stomach, shaking hands. The jittery feeling that I'm going to crack at any moment.

The hyper-awareness.

The fear.

The dread.

I rationally know these are just feelings. Intellectually I'm sure that they can't destroy me. The realistic part of me is holding on to the fact I've come out on top of just about every anxiety smack down. But facing surgery in 3 weeks, with the host of unknowns this experience comes with, is fuel for anxiety's fire.

It's hard not to plunge deep into the dark side. To worry about freak accidents, about things going wrong. About blood clots, about never seeing my kids again. About kidney failure in my future.

About getting my period during surgery.

About death.

Anxiety is throwing everything it has at me. And it has quite the extensive arsenal.

It's even got other forces cooperating with it. The drive home from Vermont in a snowstorm. The news that someone in my family was just in the emergency room. That another one is sick and I'm blood test support.

It's almost impossible to breathe deep, to stay focused, to grasp on to calm as it skitters out of my range.

Anxiety used to be my creative fuel. I used to channel it to accomplish what I couldn't on my own. But I don't want that anymore.

I don't need that anymore.

Anxiety isn't welcome.

Now I just have to figure out how to kick it out.