Saturday, February 12, 2011

right now

I'm tired. So tired. Tired to the point of bone-crushing, if that's an actual expression.

I'm so tired I can't think of a reasonable analogy to use.

There are many reasons I could be feeling this way: the relatively constant whine of one child or another, the seemingly endless frigid winter, the foster pup who likes to get up before the sun, the day in day out of laundry/dinner/homework/play dates.

More likely, it's all the transplant ups and downs. It's been quite the week. In fact, it's been quite the few months since Thanksgiving when my brother asked if I was willing to be tested until now.

I spent much of last week panic stricken about a bad test result from the week before. Renal cancer floated just below the surface of everything I did, everything I thought, everything I felt. That, and that perhaps I wouldn't be a viable donation candidate anymore. Two horrendous possibilities trailing me for days.

Battling worry is debilitating.

I was at my internist this week, had a double kidney cat scan, did another urine test. And even though I finally got an all clear that my tests were fine, I'm not done.

Tomorrow morning I start another 24 pee collection which will culminate in yet another trip to the upper west side for pee test number 5.

To top it all off, my brother's insurance company doesn't cover the hospital we've been planning to have the transplant at. Could be we have to start all this over. Somewhere else.

It's all too much to process. To much to deal with. Too much to comprehend.

Right now I have one child in tears, dinner to get together, a play to go to, a dog to walk, cleaning up to do.

What I really want to do is crawl into bed and stay there until Monday. But that's not an option. On weekends I don't get 5 minutes to myself, let alone hours. 


I want to think tomorrow will be better but peeing in a cup isn't on my top ten list.

Friday, February 11, 2011

the power of facebook

Through this testing for donation process I've shared my story with just about anyone who will listen. There's this blog, postings on facebook and twitter. I email and text updates, both good and bad. People who know me generally know what I've been going through.

My brother's been just the opposite. He hasn't really said a word, at least not anywhere I've known about. We had one quick conversation about it and he let me know that while he appreciated my cheerleader, the glass is half full stance, he needed to be more realistic about it all.

He didn't want to get his hopes up.

When I step back and look at the bigger picture, it's because he has too much at stake. For me, this has been, and will be, quite the life changing journey. After surgery and recovery though (which I'm hoping will be as uneventful as possible), I'll be down one organ but I'm hoping here too that me and my remaining kidney will have a long and healthy life together.

For my brother, it's different. Different to the point I can't really comprehend. Right now he's tethered to a dialysis machine. Three times a week he's hooked up for hours and his life literally needs to revolve around this. He can't travel. He can't be more than an hour away from a hospital, as his chest catheter is prone to infection. During blizzards, when he's sick, when he just doesn't feel like it anymore, he still has to make it to his appointments. Dialysis is non-negotiable.

After surgery, should all work out (and I'm hoping beyond hope here too), that'll be over. He'll have a kidney that functions well for the first time in his life. One thing I learned is that dialysis doesn't replace full kidney function—it brings a body back to just above the failure point. A healthy kidney would blow dialysis out of the water. And would make him feel better than he has in a really long time.

Yesterday, as I checked my phone on the way home from yoga, I saw he'd tagged me in a facebook post, announcing that a transplant was in the works, that I'd been cleared to donate and that things were moving forward.

And now, it's real.

Seriously real.

More real than the 20 odd vials of blood, 4 urine tests, 2 cat scans, impromptu psych evaluation, hours in the lab, countless consent forms, phone calls with great and potentially disastrous news, weeks of waiting, living in the unknown . . . his saying it out loud and sharing it with people he knows?

It's real.

It was amazing to see the outpouring of support from the many friends who've shared his journey with him. Who have no idea who I am. Who were just learning this news that I've been living with for months, for the first time.

It's not just my story anymore. It's our story.

One that we're collectively hoping ends with happily ever after.

Thursday, February 10, 2011


That's it folks. Yesterday's test was fine.


how to pee in a cup

You would think peeing in a cup would be as easy as, say, peeing in a cup (which, as a woman is a bit challenging but not rocket science). Turns out, I had no idea that there was a greater picture to all this, and with proper instruction and prior knowledge, I most likely could have saved myself weeks of unnecessary aggravation, stress, subway travel, borderline panic, and testing.

And so, going forward, I'll be sharing what some (including my mother) will think is too much information. Also, if you're reading this and you're not a woman, none of this applies to you. But, should this enlighten one person and spare her the experiences I've had, exposing my ignorance will have served a greater purpose.

First—if you have your period, don't give a urine sample. Let me repeat that:


Should you have your period when you're at the doctor or the lab and no one asks if you're menstruating, or about to or if you're period's just ended, take the initiative and mention it yourself.

Why? You want to avoid getting that phone call telling you there are red blood cells in your urine. And should you have your period when peeing in that cup, there will be red blood cells in your urine. How could there not be? You're bleeding. Should you be attempting to donate a kidney, red blood cells are a major red flag (that couldn't be helped) that will lead to extensive additional tests, not to mention sleepless nights.

Moving on . . .


I got this sage advice yesterday, on my way to give my fourth urine sample. Before that, not one word of instruction. Perhaps, at some other time in my life, I was given those direction but I can't begin to imagine the last time I needed to leave a urine sample for anything. I'd suppose it was when I was pregnant but that was 1: over 10 years ago and 2: I was pregnant and my brain wasn't retaining anything.

Every time I went to the lab I was handing a cup with a lid and a packet of moist towelettes. And that was it. No words of wisdom from the technicians. No instructions posted in the bathroom.

(going forward my ignorance is astounding so please try not to judge me)

First visit I never opened the packet of sterile wipes.

Second visit I used them to clean my hands.

Third visit, they served to sterilize my hands yet again.

Fourth visit, after sharing my frustration with the transplant coordinator about the poor results from the above tests, she asked if I was making sure to wipe twice, front to back.

No. No I hadn't. I hadn't realized those wipes were for anything but my hands. I'd never given a thought to the fact that those parts of my body, generally covered by underwear, could harbor various bacteria and such that could throw a perfectly good specimen into turmoil. I'm relatively certain that should I have  known the above, I wouldn't be where I am now—terrified to get another phone call listing all the horrific diseases I might be suffering from.

I now know exactly how to produce a reasonable urine sample. And I'm hoping ladies, that going forward my experiences help you to avoid the ridiculous pee mistakes I made.

Wednesday, February 9, 2011

Fear vs excitement smackdown

This morning, as I headed to the subway, I was excited. Sort of happy. Anticipatory (love that word). I was on my way to stare down more fears and I was incredibly proud of myself for not freaking. 

At least I haven't yet. 

Both a local and express pulled into the station at the same time. I wavered. Local feels safer to me and this was only the third time I'd ridden alone in years. 

I took the express. I flew uptown. I got to the hospital early. Yes, the subway is amazing. 

I am amazing. 

I've filled out my forms. That's the part that unnerves me the most. There are so many questions that don't pertain to me but just skimming makes me uneasy. And then there others like: are you ok with tubes being stuck down your throat? Honestly, I'm grateful to not have had that experience but I'm thinking no. 

And now I'm sitting. Waiting. Playing apps on my phone. I could read. I could knit. I could meditate (that one's highly unlikely). Trying not to worry about being injected with dye. Trying not to imagine what that allergic reaction might feel like. Trying to keep my head together when fear is so close I can touch it. 

It's coming for me. It wants me. It wants to win. And it's really good at what it does. My fear knows me. It knows where to sneak in, how to lull me and then strike, how to freeze my brain, shut down my logic, destroy my calm. 

The battle is starting. 

But I'm not going to let it win this time. 

Tuesday, February 8, 2011

fear is setting in

Ok. I'm scared. Even though the double cat scan tomorrow shouldn't be a big deal, I'm freaking out inside.

I hate that there's a chance, even if it's remote, that they'll find something terrible wrong with me.

I hate that no one asked me if I had my period before I gave this last urine sample, as menstruating totally taints the results.

I hate that I didn't know my period would alter the outcome after spending 3 years working on a book about menstruation.

I hate that I never knew how to properly give a urine sample and that there are no instructions at the lab. It wasn't until my 3rd test that someone explained the proper procedure.

I hate that I even had to write that.

I hate that the cat scans weren't postponed until my urine sample came back clean.

I hate that I don't know if it'll be clean tomorrow.

I hate that I'll have an IV and there will be some sort of heavy duty dye coursing through my veins.

I hate all the radiation that will be smashing into my body.

I hate not knowing that everything will be ok.

I hate when my glass empties on its own.

On the bright side, there's a great yarn store down the block from the hospital that I haven't been to yet.

I'll be shopping after pee-in-the-cup round 4 is over.

Sunday, February 6, 2011

living in greek tragedy

Last night on my way to yoga, I called someone I talk to just about every day, and filled them in on my tests and all that had been going on for the past day and a half. I didn't want to cause unnecessary worry and so hadn't brought them up to date until I had more concrete answers about what was up. But, I was feeling pretty confident (and this could be totally delusional), that it wouldn't be a big deal in the end.

"I'm pretty sure all will be fine, but they found red blood cells in my urine," I said. 

"Oh. That's how they discovered X had cancer."

The tone was matter of fact, conversational. But that one statement shattered my shaky optimism into shards of fear. 

Yes, I know that last statement was ridiculously over-dramatic.

But, in that moment, and through the next few hours, that's exactly how I felt.

In fact, that's how I've felt for much of my life.

I've spent years trying to unlearn the fears I grew up with—waiting for disaster to strike, expecting the worst, knowing that evil or disease or pain was lurking around the corner, stalking me.

Being afraid has been my default mode for as long as I can remember. 

Yes, it could be cancer. Yes, they could have discovered that I've been harboring a fatal disease. Yes, this could evolve into life-ending tragedy.

That's still my automatic response. 

While speaking to the doctor my mind was already racing with epic what-ifs as I tried to stay calm and ask pertinent questions. 

The thing is, this isn't the way I want to be anymore.

And, I suppose, I've chosen paths that force me to choose between living half empty or half full.

These days, I usually am way up towards the brim. I'm grateful, so grateful for my life. In fact, it's hard to finish this post because I don't want to dip my toes back into the negative that wants so desperately to be back on top.

This kidney journey is a constant challenge—the unknowns, the what ifs, the out-of-my-control-ness of it all. But putting myself in situations like this seem to be the way I shore up defenses against my inherent dark side. 

I could choose to give up and wallow in fear. To be frozen and small and never take chances. That's as familiar as my favorite t-shirt. As I often say, there's comfort in the discomfort. 

Instead, I'm choosing the discomfort of the unknown. It's a different kind of terror. I'm still scared. I'm still frozen sometimes. I still stare down bleakness. But through it all I'm growing instead of shrinking. 

And the possibilities of that journey are limitless.