Unfamiliar Territory

I saw my transplant surgeon last month for a routine check up. It was boring. The only news to report was that nothing major was wrong.

"She's had a normal summer!'" Nikki, sounding triumphant, announced my boring news to Dr Wali when he walked in. He looked over lab work, ordered a biopsy, and checked in with the resident on what he thought about my status. The resident, new to me and transplant medicine, was most concerned about my Parvo virus titer, which most recently was 15.000. He suggests treating it immediately with IVIG and hospital admission.

I stifle my laughter. I don't want to insult him. My titer has been upwards of 130 million. 15,000, although much higher than normal(0) seem like the best results ever and I'd like to do nothing about this number.  Dr Wali  falls between our two opinions and decides to  keep an eye on it, retesting in a month and taking action based on the trend as opposed to the actual titer.

We go over the nook-and-cranny details, the recurring skin issues and pesky infections, the underlying need to remain on prophylactic antibiotics, the tangible side effects of the medications I'm taking. He makes fun of me for asking about the tenderness in my transplanted kidney, assuring me I've created it in my head..

I leave the hospital quietly, listening to the echo of my steps on the long, familiar corridors,  smiling, but a little disappointed. I'm at a loss. Some ridiculous part of me misses the challenge of having a battle to fight. I can not be a valiant, conquering hero without an ominous foe to defeat.

How will I define myself now?
The freedom is daunting.

Show Your Scars Tour

I spent less than 48 hours in Vegas.
I didn't have a sip of alcohol.
I didn't drop a penny in a slot
Sleep was scarce.
Food was not.

Maybe out of desperation, I made the last-minute decision to head to Las Vegas for the annual Show Your Scars Tour(a weekend long event bringing together transplant friends, caregivers, donors and supporters of organ transplant). I needed to feel "not alone." I scrambled, reached out for help, hijacked my cousin's car and house, and went for it. I was going to Vegas; I was ALL IN.

I arrived late and joined the rest of the "Transplant Team" in the afternoon. I had trouble finding the group and after a failed attempt at one location and frustrating lack of confirmed details, I scoped out the second possible location, anxiously crashing the party as the remaining few finished lunch. I didn't know what to expect, and kept reminding myself that I was a big girl and would enjoy the weekend no matter what.  My ill-timed arrival and I were welcomed with smiles immediately.

Around the table, Cassie, Phil, Shelley, Mike and Mimi chatted me up, warm and inviting. I felt at ease. We didn't discuss a lot of transplant details, just some minor stuff to identify each other. Then we met more scarred friends for outside fun on the biggest ferris wheel ever - I think each pod held up to 30 people.

We spent 30 minutes circling the blue Vegas sky, taking pictures, getting to know each other and sharing hugs. Instant bonding. A pod full of giggling girls and a couple of boys who laughed along with us. I think more group selfies were taken than skyline shots.

Dinner a couple of hours later...even more warm, open and gracious folks. We smiled and laughed. I listened to some transplant histories. I shared some of mine. No one, not even Shelley, whose graft has failed and she's back on the waiting list, told a sad story. Every person at our tables was present and happy to be.

Aimee got emotional giving a toast. Mike teased Jake about his never-ending Facebook posts. Janet hugged new arrivals with genuine warmth. Darlene shed happy tears. Cassie shook her head, remembering how far Phil had come. Late-comers got a "Norm-from-Cheers" greeting. Paul subtlety got in one-liners you'd miss if you weren't paying attention. Lisa rolled her eyes playfully when her fake Happy Birthday dessert arrived. Mimi couldn't keep her contagious smile in check. I showed off my Scars-Are-Sexy shoes. Everybody posted pics on Facebook.

The rest of the evening and the next morning...the same. Smiles, Laughter. Appreciation. Repeat.

Too quickly, it was time for good-bye. A looong good-bye, an emotional good-bye. We hovered in the Peppermill parking lot for over an hour. I was in tears, and I wasn't alone.

I spent the flight back split between trying to catch up on sleep and trying to figure out why the Show Your Scars Tour was so meaningful to me. I've never been surrounded by a group of people affected deeply by something so many take for granted and no one was sad or regretful or angry or bitter. No one felt cheated. We ate and we joked and we laughed and we ate some more.

Looking back at the pics from the weekend, I'm still smiling, admiring each of us in our green Show-Your-Scar t-shirts. I'm so grateful for this time, to sit among people I admire and who don't need me to lead and be a shining example for the chronically ill.  I'm proud to look reflectively and introspectively at their faces, knowing we share an unspoken appreciation that eludes so many. We are people familiar with loss and strength and understand the power of living in the moment. 

Thank you for this moment, new and forever friends!