Thursday, October 22, 2015

Humanizing Cancer

Once upon a time I had a chance to speak to the Livestrong leaders about why I appreciate the work of the organization and the people who do it, so it's always with endearing and enduring excitement that I like the weekends that are with the team, with my family. Perhaps there are those who would not understand how cancer can cause family but the birth process is a complicated mess in its own way and I've long called the cancer part of my existence, life part II. So both of my families, those who came from birth and those who came from cancer are because of a biological connection in their own way. Maybe it's an odd thing to say but while I certainly would never sign up for cancer, this second part of life, made me aware of my mortality more poignantly and gave me a greater appreciation for life. At the first part of life, just that being born, I was far too young and immature to appreciate the gift... With both there were fears and tears and a reaching out for holding hands and each year, I'm glad to still be holding on.

The weekend began as it had last year with me, the guy who once couldn't drive for the better part of
3 years, picking up some friends who are joys in life and having good old Texas BBQ since they were mostly from out of state because that's obviously the best nutrition for long bike rides. Time flies when you're having fun so lunch hadn't been done too long before it was time for the official "Ride for the Roses" dinner. There'd be old friends to catch up on, new friends to meet, new survivors. The survivors are always the easiest to talk to for me because you find encouragement in that not only are they standing; they're working to help others stand long. There are those moments where you see someone knowing that some are still grieving the losses that have come from cancer since the last time. A couple of them had lost spouses and you hug them a little higher commending them for having kept their word of the 'till death to us part' and encouraging the rest of their journey. Seeing them smile as they told stories of the spouse cancer had robbed much too early makes you know that love is stronger than death in its own way. The hardest ones are those who are their in honor of their children passing... I can't imagine the difficulty of this one not even try because we're supposed to be buried by our children not the other way around.

The formal part of the dinner where we tell jokes about the journey and shed tears along the way, the mix of pathos and ethos echoing the up and down hills we're getting ready for. There was the survivor who talked about his childhood cancer and how out of everyone on his childhood hospital wing, he was still the only one standing. There was the survivor who talked about how they went up Mt. Kilimanjaro after cancer, taking on a peak after a tough valley of life. There was the person who graduated nursing school on the same day they finished chemo treatment, if that's not balancing health care I don't know what is.

It's been a year of transition with Livestrong as the new CEO, Chandini Portteus, taking the stage about some of the things that have shifted, changed but while she gave many new details she focused on what is, was and will be always an important part of the Livestrong mission, they had helped more cancer patients this year. The upcoming Chairman of the Board also shared her experience with cancer in her speech she gave what to me was the line of the night, "just because cancer treatment is terrifying doesn't mean it has to be dehumanizing."

This is why I've always appreciated Livestrong because they help in the here and now. They helped me deal with the treatment part and connected me to the right doctors. While it would take time and it's not done yet for it all to absorb correctly, they would help line me up with a better approach to relationships from parenting to significant others. We have to throw out numbers to get a concept like that there's over 32 million people dealing with cancer right now, in my particular case the diagnosis is 3 in a million. But those numbers are abstract without a human face and on every Livestrong story, they connect the diseases to individuals, humanizing why we have to fight the disease. We are the faces of those who got to be better parents or were incapable of childbearing because of treatment. My friend Cisco is the one who had finished treatments years back but then realized he could be part of making the cancer journey easier. My friend Scott realized it immediately and has been a serious fundraiser every year because he'd beat cancer; whether that or the fact that he kept doing it after his wife passed away from it is more impressive. My friend Steve who is still doing the journey with cancer. These are not just statistics or numbers; they're people who I have hugged and heckled, had meals with, shared memories with. Cancer and Livestrong made each of us keenly aware of our mortality, helped us balance accepting it and fighting it simultaneously.

The ride itself is always a tough party (not a typo)... I've done 5 of these and each time signed up for the century, the 100 miler, simply believing that if you sing up for the long haul then maybe I'll end up with a  longer one on my own. I knew when I started that once I got across that finish line I would have biked 500 miles with and for Livestrong. There'd be moments where I'd ride next to people, a man who had just turned 30 doing it in honor of his father who he'd lost at age 20. I'd have a few miles with another runner pretending to be a cyclist where we weren't quite sure how to turn all the gears on all the hills but hey sometimes trying new things is what messes with the system enough to get new health going in the middle of challenges. Some were riding to support their friends and family. There were of course those who were just there for the ride and that's called life. While this is theoretically just a ride not a race, I might have only stopped once and biked as hard as I could cause the weather was perfect. I've never been good at taking it easy and maybe I'll learn that lesson someday but at least for now, I chose to believe that pursuing the right pace with passion is the better path.

When it was all said and done, there was a sign at the end that said "Cancer survivors move right." All that was supposed to imply was of course left vs right and I think it's been at every Livestrong event I've ever done and I've never really caught it. But on this 5th 100 miler, I went back and took a picture of it so that the guy with the damaged memory from a cancerous brain tumor, could remember that's why I love livestrong because from day one, they pointed me in the "right" direction. Somethings I ignored initially, others I'm still learning but they were a consistent force in sending me to the right places and people.

Still, I came to a quick stop at the end cause there was some good music playing and what do you do but dance... the bike wasn't the best dance partner I've ever had but luckily a lady who gave me hope the moment I met her, Linda Santos came out and danced with me. I got my survivor's rose and then went looking for friends who had done different and shorter distances because their brains weren't as damaged. We traded some more stories, some more hugs and were grateful for the weekend.

Still, when I came home, I didn't keep my rose. I never once have. I gave it to a little girl who I hope always appreciates flowers and life. Like me, like them, like all of us, how well we're planted, tendered will be a factor in how well we grow. Like all of that, nothing is 100% predictable but if we appreciate it more that's how we humanize cancer patients and how we love and Livestrong.

Wednesday, October 14, 2015

Magic & Special Effects

Once upon a time I asked Kiana what she wanted to be when she grew up and she said a princesses... I got more than a few reprimands when I redirected her and said there was no such things as princesses. It would take time, and perhaps  a cancer diagnosis before I understood that I don't know if my home is my castle but there's been a princess living there all along. And so while it's tough to watch her grow up somedays in the best of my hearts I think she's always been and always will be a princess. 

Kiana has picked up some of my slightly cynical "focus on reality" approach. Still she arrived at Disneyworld incredibly excited about all that we would do. Still she said something as we arrived and talked about the Hollywood themed park that I was a little sad to hear "Magic is just another word for special effects." Still, only moments after we arrived, we were staying in the Animal Kingdom Lodge where there were giraffes just outside our room window before going to sleep. In the morning there would be zebras and birds that I didn't recognize. We hadn't even gone to sleep when she said this place was amazing and this was going to be the best vacation.

When the day finally started, as the shows got greater she felt water splashed and smelled things during 3-dimensional shows that showed far more dimensions than she'd ever seen. It was during the Frozen sing along show that I realized that actually this was the first time in forever that Kiana and I got to take a trip that we didn't have a race to do (still with a late arrival and no alarm clock, Kiana woke up with conviction and woke me up first.  This was a surprise since wile she is always a beauty but can be a little grumpy after first waking up from sleeping). With each ride, she kept asking if it was real or how did they do that? I generally love trying to explain the world to her but a lot of the questions I didn't know the answer to or was so mesmerized I wasn't sure it was worth figuring out.

Part of it was that I grew up in Mexico without money or even the concept of theme parks really. So the scariest roller coaster or Twilight ride were first time for both of us. It seemed appropriately eery that the only day we had a dark cloud in the sky was right before we cross over into that Zone...There that little girl hung on with conviction to me like she never had before. She made it clear that no matter what I wasn't going to let her go. I might have pretended the entire ride since this was the scariest one I'd ever been on that I was holding onto her for her sake... Some of the people who recommended going there with her or calling it the happiest place on earth described the memories they had there with their parents, or siblings and how they'd go back as an adult to relive them even without children. With Kiana and I do it, it was two people of similar maturity enjoying it. She seemed the perfect age and on many of the rides she was so excited she was just exactly the right height to go on and some were frighteningly fun enough to where there was more than one way I wished she wasn't grown up quite so fast.

I couldn't even begin to describe the number of things we did and saw in any one day period because from the day we arrived on that planet and blinking stepped into the sun, there was more to see than could ever be seen, more to do than could ever be done. Still there were moments that amused me in all areas. There was a stroller parking area at almost every place... Kiana and I laughed that while we'd done many races in many places with a stroller, she was the one who was fast passing by me and telling me to hurry to get to the next thing, no stroller necessary. She had an autograph book but very rarely used it deciding that the waiting time was best saved for experiences than for a few moments with the disney celebrities. I've been in too many waiting rooms but the faces she got at the end of each of these were the best results I've ever seen out of any line I've stood in. The questions kept coming, how did they make that chocolate stamp of lady and the tramp, how did the water come on fire during fantasma, how did Mickey disappear from here to there and end up in a different outfit? Whether the hugs of fear on the ride or the hugs of thank you or affection were tighter, I can't really tell but I'm fairly certain they were all much tighter than the ones to the Disney characters because you know those you share home is where when you gotta love the most.

Still, in enchanted tales with Belle they chose many kids for many different parts but the first one was chosen was Kiana for the part of the beast. I am not sure I'd agree with that analysis other than that I don't know anyone who in the end chases beauty with more conviction than Kiana. They would choose two adults in the audience to play the guards based on how well we could march in place and the runner in me turned on. Turns out even in a guarded castle these legs have to keep moving to protect a princess. Don't believe me? Ask the dishes.

Still as we went wonder by wonder, over sideways and under, the place that we would spend the most time was on the very first day in Hollywood Studio. It wasn't in a line, or at a show or in a ride but in a place meant to replicate the scenery from Honey I shrunk the kids. One of the great beauties of it was that by then Kiana was letting me know it wasn't actually a gigantic place but that the machine really had shrunk us as we went in. I gotta say it's a good thing I work out because the tiny places she wanted me to join her and some new friends through, down and up were making me realize that Kiana had been shrunk more than me... it was great fun.

There'd be character parades, sing alongs where Kiana was singing at the top of her lungs, pirate performances, adorable aliens, light shows. Rides down Mt Everest in roller coasters where Kiana held on which endeared me even more to life.  I took and shared more pictures in 3 days than I ever had in anything ever. There was never a time Kiana needed a break and it was a good thing I knew how to buckle down and keep going when exhausted because we were there pretty much from when the park opened till it closed each day.

The last day was in the Animal Kingdom, the place where we'd see many real animals along with characters and animation and bones of creatures like dinosaurs long extinct.Still with a little girl who makes me walk around every single bug or snails she ever sees on the ground as she rescues them and puts them into safety, it was good to see her eyes wide open asking questions about every rock and tree and creature, their life, their spirit and their name. They had a safari expedition where we got to see real lions and zebras and hippos and alligators and Kiana pointing every direction. She realized that while she'd been to zoo this was the first time she'd seen many of these animals without glass or a fence. Those weren't approachable but the place we'd spend the most time was at the petting zoo and show where she raised her hand more to either answer or ask questions. Perhaps that's how you ever achieve any balance in knowledge in life... I bring back a shot glass from everywhere I go (though at DisneyWorld they don't sell those but they sell something similar called a toothpick holder). Reminded that somehow getting to be entirely on this adventure was entirely bonkers, I told Kiana a secret that some of the people are. We picked a toothpick holder with Alice looking into things that said curioser and curioser...

We were passing by Mickey and Minnie as they were ready to sign autographs between all these and even at 35 years old meeting them from the first time somehow felt pretty cool but I kept it together :). I actually was thinking about Jungle Book about how on the last day I'd reach the top and the vacation was about to stop but the privilege of the fun made it less likely that it was going to be bothering me. It honestly felt pretty cool and made it feel real what was posted in various places from Walt Disney "Never forget that this all started with a mouse."

The last thing we'd do before heading out of there is catching the Lion King festival... felt appropriate for the Leon's. Somewhere the combination of songs and lights and humans flipping was the grand conclusion. With some great meals and times, we'd gotten Hakuna Matuta, no worries for 3 wonderful days. She gave me a huge hug as we got on the plane and thanked me for the "best vacation ever!" She fell asleep on the plane hugging the stuffed animal she'd picked up. Those hugs, the affection having a chance to live uninterrupted and highlighted by such colorful fun surroundings was special. And if the effects of that had been just the experience and the laughter and the curiosity growing that alone was plenty special. But the memories have kept coming up of things I never knew I never knew she noticed. And those hugs before, there, after, those call backs meant Disney had some great special effects and that, to me, that's magic. 

Thursday, October 8, 2015

Race For A Reason

For a little over two years now, I've been in the world of Spartan obstacle course racing. Without exception, the hardest thing I've sat through each of these years is the World Championship Beast Course 3 times runnings. It turns out that the muscles I had neglected since high school are used there and I've tried to build them up, some of those are physical and some of them are mental.

For the first time in any Spartan or any race, I had to face a course that was completely uphill for the first half, essentially 7.5 miles up a mountain that people use to ski down, along roads, single track at the highest altitude I've ever raced. I've ran in Denver before but this was a higher altitude so even further up than joining the mile high club. The race started in the 30's which I haven't seen in half a year... I joked as the course started that due to this should be a low pressure chill out kind of race but knew that there's never a day where I do that completely. At the top of the mountain there was a swim across a lake whose temperature barely broke 50 degrees and appeared to break many racers with the number of people who took DNF's after it. There was barbed wire in the cold and wind that wouldn't let you get back on your feet in very long before you had to crawl but you had to crawl and then get up and get over walls or into water again... I don't know if misery loves company but we had some company while going through misery. There are times at the beginning, middle and end of these courses where I have to remind myself that the reason I keep doing these things is because I've fully internalized that if you sign up for some hard messy things in life, the ones you don't sign up for get a little easier. There might be a fine line between masochism and accepting a tough challenge; I suppose for me that line is called a Spartan finish line.

It would be the first time I ever got all weight based obstacles without taking a break to put them down, a serious log carry, a Herculean Hoist, a farmer's carry with handles attached to two logs. I
nailed the spear throw dead center, I got the rope faster than I ever had and just when you thought you didn't have too much left they threw in a bucket brigade where all of a sudden those riding up those ski gondolas and coming down on ski's seemed a lot more attractive.

Still when it was all said and done, 15 miles with some serious elevation change and the better part of 40 obstacle, it was heart warming to once again have earned the title of being a beast. Because if it hadn't been heart warming I would have gone into hypothermia. 

Still,  once in a while, the universe is kind enough to where you get to do your best after you've done your hardest task. Where I come from, the best thing you ever do is never entirely for yourself, it's to help others. This is how I got into the world of Spartan, a guy who is much better than me, Alexander Nicholas, had guided me. So we signed up once again for the charity challenge. That first year it was just a few of us and we won it by a few seconds. Last year we put together an even better team because we had more ladies being reminded that ancient Sparta was the place that was the most egalitarian. The charity challenge requires that one of the ladies count towards your score; they are necessary if you want to rule the podium. Like the ancient female ruler Gorgo answered why Spartan women were the only ones who could rule men, she answered, "because we are also the only ones who give birth to men" It's perhaps no coincidence that our first woman placer in the challenge and top 5 overall, Jackie, is a mother of five and had come in the top 20 at the beast the day before.  

Still, as we sat there some meeting for the first time before the charity challenge, some hugging out a reunion, some talking strategy, I felt honored to be part of the team and the event. The event itself as the announcer asked how many had done the beast before, the vast majority of hands went up. I think though perhaps for each hand in there they knew they were doing one of the best things simultaneously with the hardest things and certainly for many of us the best thing after the hardest thing might mean the exact same thing. There would be folks on my team who are personal coaches that use the strengths they have and make it contagious. They make it both Epic and Tough. There would be people who were doing it because they knew cancer survivors sharing the journey and they were ready to go up and down part of this mountain again to provide help with their own hands and feet. There would be there people with injuries who were joining the team some on the sideline, some on the course, knowing we needed each of them. There were those whose father, spouse, girlfriend were competing for the best picture. When we were taking the team picture, while not all conceded, I tried to get them all to jump in because there wasn't a second where I didn't think of them as part of the team. It was a moment to realize that they helped me fight my internal demon with a hard race. I knew some of them fought their anxiety, their worries, their fears this way and it sure beat any other way that I know of. Some of them were already parents, some of them were on their way to becoming one, all of them knew how to fight life for each other. It's fairly heart warming that almost all of our original team is still there for the 3rd time in a row. I sometimes dare to dream, perhaps just wishful mystical thinking, that the reason my tumor hasn't grown is because my body has spent it's energy growing muscles and friendships grow while keeping almost all of them. Perhaps for a little while at least, the negative things stay in the background because there's no room for them at all.  

I created my team with Livestrong, a way to help out survivors of various cancers across the country. It felt entirely appropriate that we had people from coast to coast and all points in between. There were other teams there fighting for other diseases including specific cancers. There were those standing up for veterans who had pushed their minds and bodies far longer and for far nobler reasons than just a medal. It took a few simple conversations and looks around to realize that the reasons all of us, any of us ever take on cancer or enemies is not for ourselves but because we know that losing any of us is losing part of all of us. I love that the charity challenge is a team challenge because aren't we all better together? The whole is always greater than the sum of it's parts and man we had some good looking parts ;). 

When it was all said and done I was a contender of the race for far longer than I ever had been but it
was my teammates that made sure we took home the title. At least that's what I told them and they reminded me it was a team title. They had handed out a band that said race for a reason to the charity challenge. I had looked down at it and it overlapped with my Livestrong and Hope band. This was after all the reason I raced, believing that I and others keep making life have a little more hope because our reason is greater than ourselves.

I coincidentally had worn my make him work for it shirt in all Spartan races and it's now expected of me which is fine. But on the charity challenge it feels right to look at that band and wear that shirt and remember an old spartan saying, "You should reach the limits of virtue, before you cross the border of death." For three years in a row, this team, this event has done that and I think continued to push higher the limits of virtue and thus keeping the border of death further away. And that, in my book, is the best reason to race.