L Word: Transplant Games, Cleveland Ohio (June 10-15) Part I

My Cleveland Family and I before the 5K

This year, after much planning, preparation and pulling our hair out (another story entirely), my good friend Jess and I made it to the Transplant Games in Cleveland. Getting there, it turned out to be very true in our case, was a victory in itself - everything else was, well, pretty much the amazing experience we hoped we'd get out of it. We have some great stories, memories and new friends to show for it as well.

I was excited about the Cleveland trip not only because of the Games but because I also have family there - Mary Ann, my step-mother, Jay, my step-brother (and his wife, Kerri), Amy, my step-sister (and her significant other) and Elaina, Maria and Elise, my three step-nieces. Plus a few cool hounds among them. My father, whom most of you know, passed away in May of 2015.

I left for Cleveland a few days early. My step-mom and I hit a few of our usual haunts (a furniture/jewelry resale shop, always good for a new treasure or two), a high-end resale shop (run by these insane old women whose chatting and bickering makes the whole shopping experience worth it - and sometimes you can find a really great pair of pants or a cashmere sweater, too. We also hit a couple of new spots in this part of town I'd never been to called Coventry. It had some cool vintage clothing/uniquities shops (unfortunately no good iced coffee).

The family got together for pizza and hung out in Amy's back yard with her girls, we drank some wine, laughed a lot, you get the point. It was good summer visiting in the Midwest.

A chilly Southerner enjoying yard time with family and the bestest lap dog, Gracie

Opening Ceremonies

The Games started on Friday; the Opening Ceremony wasn't until Saturday though. On Friday night, Mary Ann and I went down to "Transplant Village" to get my registration packet and make sure we were registered for the 5K walk/race in the morning.

We made it!! Jess and I before the 5K

Saturday, we woke up bright and early. Mary Ann and I met Jay, Kerri and Amy down at the convention center. The whole family decided to do the walk together! It was so hot (by Cleveland standards, like 90 degrees) that everyone turned off at the one-mile mark except for Kerri and I who soldiered on! And it was on that leg of the walk that I heard one of the craziest stories of the Games - about a mother receiving a transplanted liver from her son and both had found out subsequently that they had Alpha-1 disorder. That's horrible!

We did finish the 5K! Although we were so slow that our family had started worrying about us and trying to call apparently. But we did it! Afterward, a proper celebration with the family at La Fiesta including the famous blue margaritas (which I had to try.)

"They felt as real as any family that would be here with
me and for that I am grateful." ~my journal

After a nap, we were off to the Opening Ceremony. Collected some state pins (Explanation: all of the state teams come to the Games with their own state pin, something about that state, etc. Our team brought enough pins to trade with all of the other teams, the objective being to collect all of the cool pins for the year!)

Pins, pins, pins!!

After some confusion, our team managed to all sit together. The ceremony was really good! One of the Cavs' announcers (SO HOT right then) was the MC. There were crazy stunt bikes, some music, acknowledgement of the donor families, people telling their stories and some live speakers. Ickey Woods (former pro football player) talked about losing his 18-year old son, the painful process of deciding to have him be an organ donor and starting a foundation in his son's honor. They even surprised him by bringing his son's lung donor to meet him in person. Very touching. (As a side-note, I liked how they included so many non-white people into the opening ceremony. I'm pretty sure this was deliberate as even though organ donation has started catching on as a whole, it is still not as popular for certain groups of non-whites who are disproportionately developing problems leading to the need for transplant - having more racial diversity in the pool increases the odds for these people especially.)

With Ickey Woods

Poker

My first event was Sunday at noon: Texas Hold 'Em Poker! I did not finish well, but I was extremely proud of how I played. I think I succeeded at being a more aggressive player than I used to be because some of the other people at the table were scared of me! I played very well the first hour, had some cards and had two or three times the stack of anyone.

The second hour didn't quite go as well. I underplayed and lost a couple of biggish hands. But the real problem was that I kept going head-to-head with this guy (total amateur) who was playing all hands, good and bad, the same stupid way. I shouldn't have let him get under my skin, but he seemed to have an agenda to stop letting me win big hands. I ended up going out against him, bastard, with pocket 10s (he had quad 7s) that I'd pushed really hard and eventually went all-in with - it was a 'go big or go home' moment that didn't go my way. Anyway, I met some other cool guys at the table including a guy who had beat leukemia twice with about 15 surgeries and another guy from Vegas who was a kidney transplant and does all kinds of work now with Donate Life and at-risk kids. And he's a crazy climber.

My poker table: it was a nice, easy game...mostly

Workshop Sessions

Monday I went to two really great workshop sessions: the first was on the increased cancer risk after transplant and what can be done about it. A man from the group TRIO (Transplant Recipients International Organization), also a longtime kidney transplant patient, came to speak to us about this important topic. The group talk mainly focused on skin cancer, as it effects ALL transplantees equally - we are about 50 times more likely than the general population to get basal or squamous cell carcinoma (fortunately not melanoma!) But there are all kinds of other cancers too, unfortunately for which we are at higher risk. Trios is working to put together an extensive website of cancer information and they are also interested in getting basic proactive checks more into the minds and practics of physicians who treat transplant patients.

The second workshop was about learning to tell your story (and advocate organ donation) when running into a stranger, chatting with someone at a party or telling your story as a speech or talk. Of course I loved those tips in terms of translating them into writing. This is something I've struggled with a bit - it's complicated (maybe another blog post one day.) But the whole thing inspired me to start thinking about how I could actually start composing a memoir.

I didn't have anything to do after that so I wandered a bit. Ended up running into a few old timers of the Transplant Games. One was the official mascot for the Georgia team, Mrs. Peanut! Another guy and his wife had been coming to the games for something like 20-plus years. I ended up following them to the Quilt Pinning Ceremony, which I thought would be hokey but turned out to be really cool. About 15 donor families had made squares in honor of their loved one they had lost. They came up one-at-a-time to the microphone and gave a teary summary of their loved one's situation. It was very touching.