Thursday, April 7, 2011

this is it

I just got home from the hospital. Today I was my brother's designated pick up person after his liver biopsy. They kept him for a few hours to make sure all looked good and, fortunately all did. Not only that, he did. Before heading up town I grabbed a tranquilizer, just in case things turned out like the last time I saw him post-op. That time I was on the verge of fainting at one point and he was rushed to an emergency room, then spent several days in the ICU. 

This time though was non eventful. We shared family lore, watched you tube clips, I knit for a couple of hours. Then we hopped in a cab and headed downtown. 

This is it. The last test. The results determine everything that happens next. Yes or no. Transplant or not. Does the journey continue or does it end. 

That's too much for me to process right now. 

I'm so thoroughly exhausted I can't sit up straight anymore. And I'm not the one who had spent the day being poked and prodded and tested and drugged. 

I'm finding these days I'm living on the edge of total fatigue. I suppose it's my way of dealing with things too huge to deal with. 

Just a few more days though. Just a few more necessary afternoon naps. Just one more weekend of waiting. 

And then, the next part of the story begins. 

Wednesday, April 6, 2011

someone turned on a light

I currently have 3 blogs, which is nothing short of ridiculous. This one, one that's more about writing and everyday life, and then one devoted to my newest project, Yogavotion. 

Occasionally I'll have a crossover post that'll work on 2 but this is the first time I can cover all 3 bases. 

Here it goes:

Lately, especially the past week or so, I've been so wrapped up in waiting - waiting for test results, for doctor appointments, for phone calls and updates and what's nexts, that I'd lost track of everything else. 

My creativity? All time low. My breath? On hiatus. All healing systems failed and I got smacked, hard, by a hardy sinus infection who doesn't know when to leave. 

I was living on the edge, that anxious, falling apart, having no control edge. 

It was terrifying to be there again. 

But, yesterday, one of my dearest friends was in town - I don't think I'd seen her in more than a year. Just being with her, being out of my drama for awhile, doing something completely different for a few hours, helped me find my center. 

Sometimes it's easy to fall into old habits, to throw our hands up and feel helpless against all that's out there. To forget that while yes, there's so much we don't control, we are powerful beings who can choose how we deal. 

We can breathe. 

We can find space. 

We can look inside and remember how to nurture ourselves. Could be writing, music, dance, baking. Could be hanging with a dear friend, organizing a dinner party. Whatever it takes to get us back into that flow. 

The keep is on our tracks. 

The other day, my brother asked me why I needed to freak out about all this. Wouldn't it be easier to just let it be and deal as it comes. I was so busy being the drama queen who is so much a part of me, I couldn't hear what he was saying. 

But, I get it. Drama doesn't help. Railing against what I can't control takes control and I lose myself. 

Maybe, just maybe, I can remember how to stay calm, to let go of how I've always reacted and ride out each new storm without jumping into a churning ocean. 

Tuesday, April 5, 2011

a different kind of day

Today I met my brother for lunch. We headed to a new vegan place in the east village who cast a spell over us with its lure of cupcakes.

I don't know the last time the two of us met for lunch. In fact, I'm not sure we ever have.

We scarfed down grilled cheese and peanut butter and jelly before indulging in dessert.

And we talked. Chatted really. About stuff. Nothing big. Nothing intense. Nothing life changing or significant or profound.

We just hung out on a rainy Tuesday afternoon.

It was great. And it was just what I needed to put everything back in perspective. For the first time in too long it wasn't about kidneys and testing and results and plans. It was about cupcakes, which is sometimes the way it should be.

I found out later in the afternoon that his liver biopsy is on Thursday. And I'm fine with the wait. Perhaps it was that delicious frosting that's making the difference

Monday, April 4, 2011

teetering on the edge

The good news: my brother's blood tests came back ok. Good. Better, in fact, than they were expecting.

The bad news: he still needs a liver biopsy. Just to be sure, ultra sure, beyond sure, as sure as they possibly can that his liver is ok. Because, if there's any cirrhosis to be found, the transplant would be a disaster.

We talked for a minute or so. I said I'd call our mom to fill her in. And then I sat on the floor of the kitchen and sobbed. And sobbed. And sobbed so loud I was sure the neighbors could here me.

I barely slept last night, waiting to hear. I laid in bed for hours, wired as if I'd just had a pot of steaming coffee, fidgeting, twisting, my mind spinning out of control and me not able to reign it in.

I just needed a fucking answer. A yes or a no. A date or a cancellation. Something.


But, here I am, still waiting.

We had thought he was ok'ed for surgery. We thought we had a date. But, instead, in the past few weeks we had to wait for a hematologist visit, the results of those tests, the gastroenterologist visit, the sonogram appointment, the results from that, and then the results from the second set of blood tests.

We had thought with each of those, he'd be cleared. Every time, though, something new got added to the list. And now, after all this, this liver biopsy.

I don't know how he's dealing with this. I don't know how he gets up and faces every day. I can't imagine how he carries on and keeps going and lives his life with these non-ending question marks that keep appearing over his head. Because I now can't handle it. I'm not functioning. I can't stop crying. I don't know how much more I can take.

Waiting for those blood test results was supposed to be the last hurdle and I scraped the very dregs of my patience to get me through.

But, here I am, still waiting.

And not sure how I'll make it through this next one.

Sunday, April 3, 2011

to be a donor

I was dissed here the other day. An anonymous soul commented that I whine too much. What they actually said was: all you do is whine . . . enuff already (I'm a stickler for spelling and proper punctuation, thus my need to paraphrase).  

That slam brought up many feelings. Anger, hurt, disbelief, disgust, shock, disappointment, self-doubt. A couple of days removed though, it's inspired me to write about something I haven't here before. 

What it is to be a donor. 

I'm not talking just about those, post-surgery, who've given an organ to someone else. I'm talking about everyone who contemplates this journey. Everyone who confronts their fears and their doubts, who chooses the possibility of jeopardizing their own health to help someone else. 

Everyone who offers to be tested. Those who are matches and then go through arduous physical testing and emotional stress unlike anything else. And those who aren't yet continue to search and fight for the people they love, and, in many cases, for total strangers. Since my journey started I've come across such selflessness, such bravery, such good will and dedication and faith. 

Such heroism. 

Families coming together to raise money and awareness. Others putting their own lives on the line to save someone they don't know.  Children, parents, siblings, friends willing to sacrifice whatever it takes to help. 

People creating hope. 

Giving life back to those who've been  compromised in ways we can't imagine. 

To be a donor is to step out of your own life, to venture past your comfort zone, to give in a way few have the opportunity to do. 

You're giving yourself. You're putting you on the line for someone else. You're saving a life. 

The decision to donate is brave and selfless and true. 

Blessings and a huge karmic thank you to all of you who've been on this road. Every one of you is a hero. 

And thank you anonymous, for helping me get to this place.