Friday, February 4, 2011

a glitch in the road

This morning, after frantically looking for missing homework, getting everyone out to school on time, and walking an unwilling puppy across freezing sidewalks, I sat at my desk to catch my breath. The phone rang. It was my nephrologist, asking if I had a few minutes to talk.

That is never a good sign. He wasn't calling to chat about the superbowl or my weekend plans. He was calling to let me know I'd failed my third urine test. They found microscopic hematoria or, to those of us who have no idea what that means, there were red blood cells in my pee. And now we need to find out why.

My heart started pounding. My hands were shaking as I took notes. Renal cancer. Bladder cancer. Kidney stones. Irritated linings of various things. At a certain point I couldn't take anything else in.

We next talked next steps. The double dip kidney cat scan, both with and with contrast. The bladder scope during which a camera is inserted into my urethra to check out what's going on inside. Another 24 hour urine extravaganza. And then, perhaps, a kidney biopsy should they not be able to solve the mystery.

And the transplant? It wasn't sounding so good.

As soon as the call ended I burst into tears. Heaving sobs. I couldn't catch my breath. I couldn't process anything. And I couldn't tell which was worse - being terrified about what could be wrong with me or how desperately I didn't want to disappoint my brother.


I panicked. I called Jon and freaked.

But then, I breathed. I let go as much as I could. Instead of dwelling in what ifs, I went through my day. I met friends for coffee. I went to yoga. I talked to Jack's teacher, ironing out issues that have been building up over the past few weeks.

I can't change things. What I can do is live and deal and be, and handle whatever comes next.

As I spoke to the transplant coordinator, who was calling me sweetheart by our last conversation, we discovered I'd gotten my period right after the test and that could have thrown the results. I realized, after their office had closed, that I'd actually gotten my period the night before the test - I had no idea having it was a problem. No one asked. I didn't mention.

So here's the deal: I'm not going to panic this weekend. I've got cat scan mania booked for Wednesday morning. And pee test number four lined up after that. I believe, with all my heart, that all will be fine in the end.

And if there end up being more hurdles to overcome, they're part of this journey.

To throw in a Sanskrit word (in honor of my new book): swaha.

It is what it is.

Wednesday, February 2, 2011


I was talking to my brother a few minutes ago—these days we're in touch more often than we used to be. We chatted about a variety of relatively innocuous things when he said he had heard something that would blow my mind. Now that's an expression I often use and I found it funny coming from him, who's far less prone to exaggeration.

He'd gotten a call from his transplant coordinator, who isn't the same as mine, to see where he stood with testing. He's got one more big one this Friday and then he's done. She asked about me—I'm just waiting for the rest of my results to come in. And then, she said if all came through we could be on the schedule by the end of the month.

And in that moment, I got really happy.

Psyched. Excited.

Kind of thrilled.

Am I crazy? Sort of. But I am so relieved that I might be able to help, that I can make a difference, that I can share something healing and life-changing.

Oh. My. God.

I suggested that we get matching pajamas for the hospital.

And I have to say, my brother's been very good natured about all my ridiculous suggestions.

Tuesday, February 1, 2011

living in fearless

This morning I went uptown for my very last test—the three-peat urine sample.

I took the subway up to 116th and back. Now I realize that sounds like not a big deal for someone who's lived in NYC for just about half of my 46 years. But for me it was huge.


I generally don't take the subway. For many years, well over a decade, I never walked down those dirty grey stairs, stood on those poorly lit platforms, waited for the rumble that shook the concrete under my feet. The bus is my transportation of choice. A cab. I can walk for miles. We have a car that I occasionally do more with than parallel on the opposite side of the street. Three or so years ago I took a deep breath and hopped on a train if there were no other options available. I had to be with other people. I had to be distracted. If the train slowed down, I'd get off at the next stop. This happened so rarely I could probably count the times on two hands.

But today, today I traveled alone. And was fine.

I figured if I can stare down my first operation, my first time being wheeled into surgery, my first anesthesia, giving up an organ that's been a part of me for longer than I've been on this planet and that I use on a regular basis, if I can handle strangers slicing me open, knowing I'll be in serious pain afterwards and will have a significant recovery, if I can accept that possibilities of all that can go wrong, then fuck it—the subway shouldn't be a big deal.

I'm learning to live in fearless.

Fearless to me isn't the absence of fear. I know myself too well—I'll never live without fear completely. But it's facing fear head on and not letting it win. Not making those excuses I so usually make. Not keeping myself out of situations so I don't have to grapple with the what ifs that I excel at making.

People who don't suffer from anxiety have no idea how hard it can be to be brave. To fight with yourself. To survive those internal battles. To breathe instead of panic. To function instead of freeze.

I've come so far. And this kidney journey is challenging me to challenge myself in ways I'd accepted were just the way I was.

But maybe, just maybe, that's not how I have to be.

Now I have to conquer doing a headstand in the middle of a room.

Monday, January 31, 2011

exceedingly grateful

I just came from a mammogram, the last test needed to determine whether I can move forward as a donor. Well, almost. We're waiting for results from that, from a pap smear and there's still tomorrow's pee in a cup repeat for a third time, after having taken a round of antibiotics to knock out a possible UTI.

Then, we wait. We wait to see if the transplant and donor teams give us a thumb's up to go ahead.

This is all completely out of my control. And I'm not very good at that (although this process is teaching me to be).

But, as I walked home, slipping on icy sidewalks, as the sun went down over chilly NYC streets, I was grateful.

Truly grateful.

I am grateful to be healthy. I am grateful for every test result that comes back uneventfully.

I am grateful for my children who keep interrupting me even thought I've said over and over that I need 15 minutes of silence so I can write. Yes, I am grateful for these amazing beings who make me crazy and thrill me every day.

I am grateful to be married to someone who offered to be tested if I wasn't a match. Who's supporting me through all this. Who occasionally reads my blog and is touched by what I write. Who is smart and enthusiastic and curious. We've known each other for 27 years, which is INSANE, and there's still so much to do and say.

I am grateful for the many people in my life who are in my life. Who listen, understand, help, offer. Who love me. Or even just like me.

I am grateful at how often I laugh every day. I am beyond grateful for The Office on Netflix.

I am grateful for my parents, even though one doesn't talk to me anymore. I'm grateful that they're both here and relatively ok. And there's a step out there who loves me whole-heartedly and makes my life that much better because he's in it.

I am grateful for where I live. Not just that I live in the west village in NYC. But that I have a roof over my head, clean water to drink, steamy showers in the morning. Not to mention stunning sunsets out my bedroom window.

I am grateful for yoga. For the path I've now been on for more than 6 years that's made such a profound difference in my life without my meaning it to. I'm grateful for the studio I practice at, the amazing teachers I've met, the colors, the music, the movement. The flow.

I am grateful that I have health insurance. A lovely dentist. A gynecologist I adore.

I am grateful my creativity is creeping back. Slowly, so slowly, but I'm feeling glimmers after what I'd worried was an endless drought.

I am grateful for my puppy. To sit with her on my lap, scratching her belly as she rests her head on my neck is bliss. To be met with true love every time she sees me is precious beyond words.

I am grateful that I can write. That I've found my voice. That I've explored and delved into and tried on my beliefs. That I make a stand. That people listen.

I am grateful for my life.

And I am grateful that I can hopefully make someone else's better.

I am grateful that I've come so far on this kidney journey. And I am hoping to be grateful that my kidney will find a happy and healthy home with my brother.

Sunday, January 30, 2011

advice from unlikely places

Yesterday, as Iz and I were having a late lunch at Bruce's (the new diner that opened on 6th Avenue that has amazing potato pancakes and sweet potato fries and a greek salad that's insane), we talked about me and the slump I'm in.

I guess one could call this a slump.

I suppose I'm officially calling it a slump.

The Elissa Stein Slump of 2011 (although it went on for much of 2010 as well).

We talked about why I'm not creative anymore. Actually, I talked about that and she insisted that of course I am—it's all still there, it's just overwhelmed by everything else that's going on.

We talked about perhaps being on medication was what's taking away that drive, that insane drive that so often consumed me to make things happen.

She looked straight at me, hard, stopped eating the chocolate cake that they bring to the table before you even order, and told me I can't stop taking them now, not with this major operation in my near future. Very calmly, very wisely, she told me there was too much stress in my life at the moment, that when facing such a major event I shouldn't even think about stopping meds, but that after I'm healed and in a mellower place I could think about it and slowly see what it was like to stop knowing that if I could always go back on them if I didn't feel right.

Words of pure wisdom from my not-yet 13 year old.

Words of truth.

I'm finding, as I contemplate this surgery, that I'm shutting down in many ways. It's hard to get things done. Contemplating laundry, scheduling appointments, cleaning my desk (which always borders on disaster), can be too much. I want to escape into sleep but then wake up often during the night. Things that should be automatic and easy, like planning my dog's birthday party that's taking place later today, are almost impossible.

I'm slacking. The fridge is almost empty. I'm not on top of homework the way I should be. I haven't even started thinking about camp. I need a haircut. I can't get control back of my apartment. I still can't do a headstand in the middle of yoga class even though of course I can. I'm not eating well and can't seem to get back to a healthier place.

I think I'm scared, underneath it all. Scared of the surgery. Scared of being put under. Scared of being unconscious on that table for hours while strangers are slicing into me.

Scared of the pain. Scared I won't be able to handle it. Scared of the recovery.

Scared of waking up and finding out they couldn't do the transplant.

I have one test left—a mammogram tomorrow. That and a re-do of the urine test I keep failing. If these results, plus those from my gynecologist are good, my testing is done. Then it's waiting for the donation/transplant teams to sit around a table discussing whether to go forward or to say I'm not qualified as a candidate.


But, I suppose, in the scheme of things, this lethargy and turning inward isn't bad when I look at the bigger picture of all I'm facing at the moment.

My apartment's not that messy. The dogs don't have huge expectations of what a party is. We're all wearing clean clothes.

I'm learning to be kind to myself through all this - the opposite of the beating up anorexic mindset I had for so many years.

Damn. I'm taking care of myself, even healing, in the middle of this craziness.

That realization just left me speechless.