Saturday, March 26, 2011

good news!

I got the following text yesterday, on the way to yoga:

all good. it's a go.

I took that to mean my brother's blood was fine. FINE! Woohoo!!!!

He corrected my facebook post in which I shared that info:

Fine is an overstatement; with medication is sufficient for surgery.

Ok. I stand corrected. Regardless though, it's good news. Great news. It means wheels are turning again. That we move forward instead of standing still, that the transplant is literally back on the table.

That a new date is imminent.

Only, it wasn't. At least not yesterday. His doctor never called to talk about next steps. That means an entire weekend (not to mention all yesterday afternoon), waiting. And waiting. And waiting.

Doesn't anyone in the medical profession realize what a harsh thing it is to leave patients hanging on a Friday afternoon? It truly borders on cruelty. To know that people in the know have information you need and they're not sharing in a timely fashion? It sucks.

I had an amnio when I was pregnant with Jack—I was over 35 and so it was standard procedure. Heading uptown on a bus, I got a voicemail that all way good, the results were fine. And that if I wanted to know the sex of the baby, the office was open until 5. It was 4:40 and I immediately called back, heart pounding, desperate to find out boy or girl.

"The office is now closed," was as far as I got. They'd already shut their phones down for the day. I dialed over and over and over until well after 5, to no avail.

That was the longest night of my life. Time slowed until every second stretched before me like an endless desert. I couldn't sit still. I couldn't sleep. I couldn't concentrate on anything else. All I wanted was an answer. How could people know something so profound about me, with me having no access to the information?

In spite of the fact that the office opened at 8, no one picked up the phone until 8:20. By that point I was on a torture rack, my patience stretched until its almost breaking point.

To me? Information that would change my life. To them, not so much.

This wait isn't quite as dramatic. I'm not pumped up on pregnancy hormones. And I'm not the one whose body is failing. Knowing my brother, he's not in any way as unhinged as I was (he never is). But still, people out there, when you have info, make the call.

This is more than a test result.

This is somebody's life.

Friday, March 25, 2011

rating the wait

There's been seemingly endless waiting along this journey that's now been almost four months since my brother first asked if I was serious about being tested.

There was the wait for our initial appointment, about a week and a half after I decided I was in. At that point the experience was nothing but unknowns: a strange doctor's office in a neighborhood out of my comfort zone. Dealing with how I'd travel (my subway phobia was still steadfast). Nothing but imagining and worrying and spinning stories about what might be. I'm giving this a 6 out of 10.

Our first wait in the lab that turned into coming back the next morning to give up 6 vials of blood for cross matching tests—while there, the wait to find a viable vein in my brother's arm. Giving blood for him isn't easy. That first hour plus, knowing we only had so much time before our meter expired: 8.

One of the hardest waits was the two plus weeks after that to find out whether or not I was a match. The best of intentions would mean nothing if I couldn't continue. My life was going to change dramatically or stay exactly the same. And while part of me was committed to saying goodbye to my kidney, another part of me was silently hoping I wouldn't have to go through all that was necessary for that to happen. This was happening towards the end of December and I was going on a cruise over the holidays. I wasn't sure which would be harder—going away without a clue or spending a week dealing with the concrete fallout. I'm thinking this could only be a 10. Or even 11.


After that was another 2.5 weeks for my first big morning. Nephrologist, transplant coordinator, donor advocate, social worker. 9 more vials of blood. First pee test. During the first 5 minutes they thought my blood pressure was too high to continue. Turns out the machine wasn't working properly. Wait to find out the results of the manual reading: 9.5 (my heart was pounding).

Sitting still during the 3 hour glucose tolerance test: 4. I got to talk to some lovely people. But, finding out and then waiting for an improptu psych evaluation when that was over? 7.5.

The weekend after failing my 3rd urine test, hearing that colon cancer could be the culprit and waiting until Monday to find out if in fact having my period could have thrown the test: 27. And that's still out of 10.

The wait to find out if I'd passed my psych eval or if they'd deem me too unstable to continue . . . to be honest, I'm still waiting for an official thumb's up on that one. But, I'm assuming all was ok since all continued from there. At the beginning, taking my anxiety attack in the social worker's office and history of an eating disorder: 8.5. After a few weeks of hearing nothing: 3.

Waiting for the results of my 4th and 5th urine tests: 2 (I was pretty sure I'd been fine all along, I just didn't know how to properly do the test).

Lying on the cat scan table, knowing the dye was about to hit, causing waves of intense heat to travel from the top of my head to mid-thigh: 8.5. Waiting for the sensation to subside once it started: 12.

Waiting to meet the surgeon: 9. For some reason this was one of the most terrifying parts of this for me. It made it real, concrete. This person would be slicing into me when I was unconscious on a table.

Waiting for my brother's test results that he's getting at the hematologist today: 5. At this point I'm numb. Anxiety's been muffled by fatigue. I think my mind's protecting itself from letting the swings get out of control. But, as the day moves along, I know that number's going to keep creeping up. And so, right now, I'm going to take a nap, to kill an hour or so. I'll go to yoga when I wake up, to keep my mind off things. And hopefully, post class, there will be good news to share.

And then waiting for surgery will begin.

Thursday, March 24, 2011


Tomorrow my brother goes for his follow-up visit to the hematologist. He hasn't heard one word from anyone since he was there for testing 2 weeks ago.

Tomorrow we get news.

Tomorrow we find out if this kidney ride cranks back up again. Or if it stays in neutral.

Tomorrow we may get a new date. Or we may stay stuck in limbo.

Tomorrow questions will be answered.

This is starting to sound remarkably like a reality show.

Will we make it to Hollywood? Will we show at fashion week? Will we get our own chain of fast casual restaurants? Will we beat the Iron Chef? Will we be on the cover of Seventeen magazine?

Will my kidney finally move to its new home?

Of course, tomorrow won't end the questions. Question like:

Will my kidney fit? Will it work? Will it keep working? What happens to both of us if the transplant can't happen?

Will we still talk every day?

Will I go through with getting a tattoo?

Will he be ok?

Will I be ok?

I suppose, though, the above questions aren't new, they've always been there. None of them are easy to think about, talk about, acknowledge (even the one about the tattoo). Maybe these are questions that I need to keep locked away—getting lost in them invites anxiety over for a visit.

So, I'm hoping after tomorrow the questions will be more along the lines of:

What kind of matching slippers should we get?

What color bathrobe should I be searching for?

Will my brother bring vegan cupcakes to the hospital?

If so, I call the triple chocolate ones.

Wednesday, March 23, 2011

losing the battle

By 9:30 this morning I was done. I'd walked two dogs, in the snow. Gotten two kids, one of them exceedingly grumpy, up and out to school before 8. I had an impromptu meeting with the parent coordinator and then another with the guidance counselor. I made my bed, cleaned the kitchen, gotten loads of laundry together.

I filled up my hot water bottle (my favorite gift ever and most prized possession), surrounded myself with too many fuzzy pillows, and got back in bed. And slept.

I can't face anything right now.

I can't do, accomplish, plan, organize, create.

I'm shutting down.

It's not depression, but it's beyond lethargy.

I feel like there's nothing to look forward to. Nothing exciting coming up. No projects due. No work to immerse myself in. Yes, there's plenty I could do, but I can't.

I literally can't.

I can't remember what it's like to make things happen. And if there's one thing I know how to do it's that. But I've lost the ability, the drive, the impetus. It's like I've hit the middle ages of myself (OH, that just made me laugh) and don't know when the renaissance is going to hit.

No, this isn't a mid-life thing. I guess it's a mid-kidney thing. It's a gloomy day thing. It's a feeling lost thing.

I'm used to having a purpose, a goal. But right now I don't have one. I'm on the verge of a huge thing—but who knows when that'll happen. Or if. When I'm feeling like this, standing at the edge of negativity, it's almost impossible to fight its pull.

Today I don't want to fight.

I can't.

At least I know this won't last forever. Hopefully it won't last very long.

Tuesday, March 22, 2011


At the moment we're all fighting something. Jack had a fever last night after a day with a sore throat. Iz's nose is super clogged. I've been having trouble sleeping as my head's been congested for a few days, my nose is just starting to run. None of this is major—sudafed, tea, hot baths and showers and we'll be fine.

My brother's fighting something too. Only for a him a fever means intravenous antibiotics administered when he's at dialysis, adding even more time to the time he spends there. 

I can't begin to imagine what he goes through. 

After FLOW, I started working on a book about aging: WRINKLE. But I couldn't go through with it because the reading and research freaked me out. Too much. The thought of my body giving out, falling apart, failing was terrifying. Yes, I know it's inevitable. Death is a part of life. I'm kind of more ok with that than the illness part. The not being able to rely on everything working properly part. The phone calls with bad news. The waiting for test results. The potential doctors visits and medications and hospitals. The dread of cancer. Stroke. Dementia. 

For as open and accepting as I like to think I've become, I freeze inside when confronted with illness. Panic takes over. Fear quietly glides into my heart and into my brain and I can't breath the same way anymore.

I can't live in fearless when it comes to the thought of illness. I live in fear. Rampant, overwhelming fear. 

I hold on so tight to everything being ok, at least the ok that I can live with. My ok means sinus issues I've learned to deal with, muscle aches and pains I ice and rest, menstrual migraines that split my head open for 2 days at a time. I can handle emergencies really well but the thought of longer term issues bring me to my edge. When Jack was little he had febrile seizures. They destroyed me. Every time he had a fever I'd lose myself in hysteria. I couldn't cope. I couldn't be calm. I couldn't find my center I was so afraid of what might happen. After 5 of them, 4 emergency room visits, an ICU stay, a neurologist, a cardiologist and endless testing, he was fine. It took me years to accept that. In fact, last night after I took his temperature, I realized that I finally don't freak out anymore, worried his eyes would roll back in his head as he lost consciousness. 

My brother doesn't have that ok. He deals, every single day of his life, with medical issues. He doesn't know anything else—he's been battling since he was a baby. I suppose this is his reality and perhaps he's got an ok status quo that works for him.

But, right now, he's not there. He needs a kidney. He needs to get rid of that chest catheter. He needs to get to a healthier place where his body can gain strength and heal a bit instead of fighting so hard against so many things. 

Damn. I with there was something I could do right now to make it happen. Today donating a kidney is just a concept. It needs to be a reality.

So, universe. Please get this riding moving again. It's time.

Monday, March 21, 2011

the gratitude challenge

No surgery today. I'm both disappointed and relieved. No matter how much I convince myself I'm ready for this, I never truly will be. And that's ok. If I can face this without a breakdown, I'll be proud of myself. Hey, even if I do lose it along the way (which will most likely happen), that'll be ok too. In spite of my fears, my anxiety, my innate need to doubt and second guess I'm in this until my kidney and I part ways.

And so, instead of being knocked out on an operating table right now, I've been thinking about how grateful I am to be in this place.

Overwhelmingly, exceedingly grateful.

Grateful for my body for being healthy enough to actually give up am organ. Grateful for my soul which continues to persevere in spite of myself. Grateful for my brother who blows me away by how he just keeps going in spite of all the extra challenges he has.

I'm grateful for my husband who never gets annoyed (well, almost never) when I wake up in the middle of the night asking if everything's ok. For my kids, who are strong and resilient, thoughtful and supportive - much of the time. Grateful that Jack wrote me a song called "3 Magic Kisses" and that Iz wrote a story about me that just was awarded best in Manhattan in a picture book making competition.

My mom and stepfather love me without reserve and are always there for me no matter what's going on. I have remarkable family, friends and a community of people who are caring and concerned. My puppies explode with love every time they see me.

I am grateful.

Today I'm also grateful for my red polka dot umbrella. For hot mochas on cold mornings. For being alone on Mondays. For my ease in being able to write on my iPhone.

For all the love that is in my life. And  how much I appreciate it all.

So, here's my challenge. Spend a few minutes or a few seconds thinking about what you're grateful for. I'm pretty sure you'll end up smiling. I did.

Sunday, March 20, 2011

staring down a vaccuum

I am pissed. Angry. Frustrated. Roiled (I know that's not quite the way to use the word but I like the way it sounds). Stuck. Bored. Stumped. Lost.

Could be pms. Could be Sunday night blahs. Could be this low level cold that I can't seem to shake. Could be the mountainous pile of stuff on my desk that has proven impossible to reduce. Could be that it's been days since I've been to yoga. Could be all the things I have to do that I have yet to begin.

Could be because the transplant's been postponed and I'm staring at nothing.

I'm sure, beyond sure, surer than that shadow of a doubt  saying that if I was heading to surgery in the morning I'd be completely and certifiably unhinged. I can't begin to imagine what that will be like.

But, now I have more time to sit and wonder and wait.

I spend my life planning. Planning for me, the kids, Jon. The dogs. Extended family. School vacation trips. Camp options. Doctor appointments. Car inspections. What to do for birthdays. Book club dinners. PTA fundraisers.

I can't plan this. I have no say, no input, I'm not on any organizational committee.

I keep thinking that one of the lessons for me in this experience is learning to let go. To come to terms with what is and letting it be. When I'm a bigger person I can grasp onto that for a bit but it's so delicate it slips through my fingers and it's lost. From there I can plunge into, well, here. Bored. Gritting my teeth. On edge. Wanting something, anything but having no idea what it is.

Actually, I do know what I want. I want a guarantee that everything will be ok.

Sadly, that's not possible. And maybe that's the wall I'm battling against at the moment.