Saturday, May 28, 2011

waiting is my middle name

Final test results were due back yesterday, to let us know if my brother's infection has been bested and the transplant would get a green light. Preliminary findings looked good but it was all about Friday's final ok. After being in the almost place so many times  I wasn't ready to let myself get pumped until we got an official yes. 

It never came. 

No phone call. No email. No update from anyone with access to any information. As the day wound to a close and I knew everyone involved must have fled their offices for the 3 day weekend, I realized it would be yet another weekend floating in the not-knowing. 

The land of maybe. 

Maybe surgery will be in 9 days. Maybe we'll go for pre-testing this coming Wednesday. Maybe I'll need to start scrambling for dog walkers and people to pick Jack up at school and volunteers to take my place at high school tours and middle school orientations and the countless meetings I have scheduled over the next few weeks. 

Maybe I'll need to schedule an accupuncture appointment, a massage, maybe I'll finally get my toes done. 

Maybe I'll get to do yoga for an hour 45 to nothing but Zep. Maybe I'll get to a class every day from now until I need to be in the hospital. 

Maybe the anxiety that I've been keeping at bay will come rushing back to take over. I feel it building strength at my edges. But maybe this time I'll be strong enough to not let it take over. 

It's almost fitting, after the past 6 months of craziness, that this last bit would be equally as cloudy and uncertain. What's different though, is how I'm handling it. 

Instead of getting swept away in panic, I'm staying present and am grateful for every moment. Every hug Jack wraps me up in. Every jump of excitement the pups give when they see me. Every time Jon walks through the front door. Every second Iz holds my hand while we walk down the street. 

Every night the sky glows at sunset. 

Every time I practice yoga with light streaming through orange silk curtains. 

Every first sip of a chocolatel-y, foamy decaf bahia from the new Brazilian coffee bar across the street. 

Every bite of watermelon Iz and I crunched through last night. 

Not to be a fatalist, but who knows what might happen. At night, my mind wants to go there as I fall asleep. I'm trying so hard not to go there though and to kick what ifs and maybes out of the room. 

And so folks, I'll finish with what my brother texted me this morning: I'll let you know when I know. 

Wednesday, May 25, 2011

antici . . . pation

I've been here before. Many times. Waiting to find out if we move forward or we're still stuck in transplant quicksand.

At the moment I'm relatively ok. Could be because these test results are small change compared to others we've waited for.

Just to recap for a moment (and this list includes results for both of us) we've waited to hear about: heart damage, kidney function, psychological stability, clotting issues, cirhossis of the liver, insurance coverage, abdominal masses, uterine health, parasites, infections, contaminated tests, a consensus from doctors who disagreed. There was a (minor) cancer scare, a moment or two of never before seen high blood pressure. Tests that needed to be repeated for a variety of reasons.

So, hoping to hear an infection's completely cleared after 3 weeks of antibiotics is far less stressful than most.

Still, there are no guarantees. And I've given up thinking a positive outcome means we move forward.

One thing I've learned over the past 6 months, or, more realistically, something that's been beaten into me, is to let go of expectations. Hoping, wishing, feeling anxious/angry/frustrated does no good. Am I good at it? Not even close. But I'm getting better. This wait isn't wrapping me up in neurotic knots the way it would have 3 months ago.

Having said that, I literally just found out that we won't have this latest round of results back until Friday, but if I'm not tested tomorrow for HIV etc, those answers won't be available in time to make our surgery date. This could be the second time I go through these tests only to find more vials of my blood will just be thrown away.

Transplants are messy. Unpredictable. Sometimes chaotic. Often confusing. Crammed with more unknowns in an abbreviated time span than one can almost contemplate.

But, here I am. Still sane. Still grateful to be a match. Still nervously looking forward to what's next. And still waiting.

Tuesday, May 24, 2011

the sun will come out . . .

If my brother's test results that are due back tomorrow are ok, I'll be at the lab first thing Thursday morning for HIV, plus hepatitis B/C testing. And should those be fine (which they should), and nothing else come up, a week from today we go for pre-surgery testing.

And if all looks good, and nothing else comes up, we've got a transplant date on the calendar.

It's still not on my calendar.

But it's starting to feel like it might actually happen this time.

Monday, May 23, 2011

the seven circles of waiting

I used to thinking of waiting as just that. It could be with excitement or dread or nervousness thrown into the mix but I never thought any deeper about it. 

All the waiting I've done over the past 6 months has sharpened my awareness of the subtleties and differences that this state can bring. Waiting to donate has distinct states that I'm now recognizing go with specific situations. And sometimes, like today, you can be stuck in several levels at the same time which makes it almost impossible not to give in to anxiety. 

And so, I thought perhaps writing through the seven circles of waiting would help me deal with, well, waiting. 

Circle 1: waiting for my brother's testing. There's a specific stress that goes along with this particular preamble. Testing for him is never easy. Even giving blood is problematic and so every test, whether big or small, has unique issues. 

Circle 2: waiting for my brother's results. At any and every step, the transplant could (and has been) postponed because of what the tests show. Not only that, the fear something even bigger could be discovered looms at the edges of each wait. 

Circle 3: waiting for the doctors to weigh in. This level was completely unexpected. I'd thought that should test results be ok, we'd move on. But no. Doctors don't always agree on what was found. And sometimes they're on vacation or taking care of their own families or postponing phone calls until after a weekend. 

Circle 4: waiting to be tested myself. From the beginning of this journey I've had to contend with my own neurotic fear that something life-threatening would be discovered. Something that would prevent the surgery from going forward. Something that not only would compromise my health, but my brother's as a result. Which leads to 

Circle 5: waiting for my own results. I've been treated for a urinary tract infection I don't think I had. Was on alert for possible renal or bladder cancer based on red blood cells found during a urine test that were the result of having my period. Was told I had high blood pressure because the machine wasn't working properly. 

Circle 6: waiting for surgery. I've been here before. Contemplating the hospital, the operation, the pain, the recovery, the what to wears, the post-surgery bad hair, the how to walk the dogs and move the car and feed the kids, the what if something goes wrong. 

Circle 7: waiting to be sliced open. I can't speak about that yet as it hasn't happened but I'd assume that waiting comes with its own nerve-wracking feelings. They already know to give me tranquilizers as soon as my IV is hooked up. 

And then, there's another circle or two of waiting involved. I won't know, until I wake up, whether or not my kidney's even been removed. There very well could be not enough room in my brother's compromised abdomen to fit another organ in. I've wondered, for a moment or two, how I'd handle that particular fail. But, I can't go there. 

As I can't go to the last wait. The wait, that should every test be fine, every doctor be on board, and the kidney finds its new home, that it'll stick. That's a wait that will be with us always. Even though this kidney will now be my brother's and this particular part of  journey will physically be over for me, emotionally it won't ever be.

Today I'm in Circles 1, 4, and 6 with the very last bonus level gnawing at my edges.  

I'm breathing. Deep. And trying not to let myself get swept under. 

Sunday, May 22, 2011

6 months

Last night, after a few insanely busy days during which we were in touch far less than usual for these days, I spoke to my brother. First, the usual chitchat. A recap of Iz's play and book award ceremony. The highlights of Jack's baseball game and an update on Jon's first mountain biking expedition. And then . . .

Me: So, maybe this new date will be it.

Him: Yeah, it's looking like it might be.

(note: the above is paraphrasing—I don't record or take notes while talking on the phone)

He has blood tests on Monday, to make sure the infection has been completely vanquished. Preliminary results are back Wednesday. Thursday I have an appointment for HIV and hepatitis blood testing. And then, a week from Tuesday we've got pre-surgery works ups on the conceptual calendar.

I noted my blood tests on my real calendar last night.

Yup, this could be it. 

I've been so worn down by the twists and turns, the upsets and changes, the starts and stops, the reality of the transplant actually happening is almost impossible to comprehend. I'd been so worked up by all that proceeded it but now, I know whatever happens, we'll deal. 

It could be 15 days until I'm in the hospital and the next part of this journey truly begins.

I'm thinking a monster to-do list should be at the top of my to-do list. 

Even before that I need to list: kicking into high gear.


Big thoughts for early Sunday morning. But, I'm liking the laid back approach much better than the rampant hysteria that's been biting my heels for months.

So, I'm going to drink my (decaf) coffee, watch pokemon videos with Jack and hang for awhile before I let that other part of me kick in.