Saturday, April 2, 2011

one last hurdle

Yesterday I got a text from my brother. His abdominal sonogram was fine, or as fine as it could be with all he's got going on inside. But, fine enough to get a thumb's up. All he needs is an all clear from the many vials of blood he gave last week, to determine liver function and whether or not cirrhosis has shown up. We should hear results by Monday afternoon.

And then, we get a date.

Oh. My. God.

Getting to that all clear text came after a stomach-churning afternoon (anonymous #1, this isn't whining, but if you're looking for sunshine and rainbows, please stop reading now). He was supposed to hear from his doctor but it turned out she was off on Fridays, which wasn't what he'd been told. The report was then faxed to him, so he could forward it to his nephrologist.

He read the entire thing to me.

I don't know that either of us understood a word.

It didn't sound good though. Then again, it wasn't a report of a healthy mid-section. And, who were we to possibly interpret what any of it meant. A chill went through me as he rattled off cyst sizes and abnormalities and suggestions of further testing. My first thought was to send it to someone in the medical field who might be able to read and make sense of it for us. In that moment, it would have been a true gift.

But, there wasn't anyone to send it to.

And so, we waited.

I broke down. Which doesn't happen often. I may vent here, voice frustration, rail against the enormity of what's going on, but I don't let any of it take over, mostly for fear I won't be able to get it all back together after the storm.

That having no one to call was my tipping point. Tears started until I was sobbing so hard I had trouble breathing. What if everything fell apart? What if, at this point after months and months of testing, we couldn't continue. What would my brother do? Ice flowed through me, leaving me shaking with dread.

Facing the dark side of this is a place I never wanted to go. And I never want to go again.

Despite my fear of getting stuck in the storm, I survived. I had to pick Jack up at school. I couldn't talk to anyone in the yard though. I couldn't be light and social and present. I bought a huge piece of chocolate cake on the way home (I haven't done that in years), and ate it in one sitting. I drank too much hot chocolate. I shopped for more good luck talismans on etsy. I took a really long nap.

Waking up to find the good-to-go text.

Now? More waiting. And then, should all be ok, it's countdown to surgery and then many what ifs that go along with that.

Part of me feels like I deserve some major prize after all this is done, for having survived the experience. Truth is, there would be no bigger reward than my kidney becoming his and my brother feeling better.

Thursday, March 31, 2011

shutting down

I've been fighting something for weeks, living on sudafed and mucinex and apple cider vinegar tea. So tired every day I can't make it until bedtime without a nap. Forgetful and spacey, losing track of projects and taxes. It's hard to be social, to make plans, to chat which is usually effortless for me.

I'm shutting down. At least as much as I can with 2 puppies to tend to, 2 kids to take care of, meetings to attend, work to do. Just walking down the street in NYC requires vigilance. I can't ever really turn off.

And so, my body did it for me. My body recognized that where I am right now is huge and scary and intense and profound and is bigger than laundry and making dinner.

I'm giving away a piece of me. Forever.

To be able to cope with this I've intellectualized, minimized, negated all those sweeping emotions that can take over. I've slammed that door, locked it and flushed the keys down the toilet.

Only if doesn't work that way. No matter how much I want it to. No matter how hard I try.

This is beyond huge.

The waiting completely and totally sucks.

I want guarantees that my brother, the kidney and I will be fine in the end.

I want a crystal ball, a fairy god mother, a magic wand.

I want a happy ending.

I want to be past this, not still in it with no idea when or if things will happen.

I want someone else to be the strong one for awhile.

I want to be able to fall apart and trust that I'll be ok when the deluge is over.

Because there's a storm in me I'm afraid is too big for me to handle. But if I keep pretending it's not there I won't get better.

And this is not a place I want to stay.

Wednesday, March 30, 2011

today's ups and downs

This morning I wrote about families and estrangement and holding on or letting go of pain and frustration—part of this journey, for me, is dealing with all of that.

But, before I got around to posting, more transpired.

It's all left me too tired to make dinner for the kids, to pour dog food in a bowl without spilling it all over the floor, to finish a sentence or a thought.

So, here it goes, in abbreviated form:

My brother saw his gastrointerologist today, who's concerned about his liver. He's got Hep C, which can cause cirrhosos—something I knew nothing about, really, but now do. He had 9 vials of blood drawn today, has a sonogram tomorrow, and if all that comes back fine, the transplant is back on the table. If things aren't what they should be, a liver biopsy is next for him. And, should it be that cirrhosis of the liver is indeed present, a transplant may no longer be possible.


A possible date has been floated, should all be fine (which for god's sake please let it be already), which is the first day of spring break. The first night of Passover, which we always host. That means I'd have surgery and then come home to recover with 2 kids and 2 dogs 24/7. That would mean more meals to deal with, more bickering to navigate, more boredom to assuage.


I'm already wiped out and I haven't done anything yet. The emotional toll of these ups and downs is starting to wear me down. My body finally gave out—I'm battling my first sinus infection in longer than I can remember and at the moment it's winning.

While I'm writing this I'm listening to Jack monologue about Pokemon. I'm making dinner. I'm getting ready to walk the pups. I'm making sure Iz gets her work done. I'm organizing my taxes. I'm cleaning the apartment so I can finish designing a resume for a friend.

But maybe feeling under the weather and filling up time will help with another long night of waiting.

I'm hoping tomorrow brings good news instead of more maybes.

Tuesday, March 29, 2011


We're on hold. Again. 


My brother may now need a liver biopsy. The nephrologist needs to discuss things with the gastrointerologist, and once they figure out next steps, they'll let the transplant coordinators know who will pass on the information to us. 

Who knows when that will happen. 

And so, we wait. 

Last night I told my brother how badly I felt that things were delayed again. He said that for him it wasn't a big deal, that this is his life now. That he felt badly about how this was affecting me. 

The truth is, this is my life now too. I made this commitment. I'm in until the end. Yet again this reminds me of pregnancy - the unknowns, the waiting, the stress, the excitement, the unexpected things that come up, the emotional swings, the fear. And knowing it is what is until it's over. 

The difference is that my brother's not well and every day this is put off is another day he's not getting a chance to get better. For his body to stop fighting so hard. Maybe even to heal from all he's been dealing with. 

And for me to be able to help.

Monday, March 28, 2011

smacking back a panic attack

Last night, as I got into bed, late, I felt that familiar flush hit my head, a wave of claustrophobic heat that's not a hot flash but I've learned to recognize as a thumb's up that a full-fledged anxiety attack is on the way. 

I was both overly frazzled and totally exhausted. A sinus infection's dug its heels in. In spite of it I did yoga first thing in the morning and then ran around the entire day. Jon came down with either a stomach bug or food poisoning last night and so, in addition to the usual dinner, baths, walking dogs, and sibling and canine mediation, he needed some serious attention and care. 

On top of that, we should be finding out today what's up with the transplant. And let me say, again, that it's far easier to be brave about this when nothing's actually happening. 

On the surface I was trying to hold it together, afraid if I even mentioned the terror just under the surface, it would pull me under. 

I didn't want to go there. 

And this time I didn't. 

I fought back. Hard. Even though I was sure I didn't stand a chance. I clutched fuzzy pillows. I chanted sanskrit in my head. I went over the next day's to do list until I finally fell asleep. 

I woke up with a pit in my stomach and cramps rippling across my abdomen. Could be sympathy pangs. Could be from my period. Could be I caught something. My throat hurts. I'm so tired I could crawl right back in bed again. I'm still balancing on that sharp edge of panic - the air is so thin here it's hard to breathe.

But if I can face giving away a kidney, if I can do a headstand in the middle of the room, if I can ride the subway by myself, then fuck you anxiety. You can keep showing up. You can keep playing your game. You can shadow me forever. But I know you won't win.