The One Leper

Many years ago, back when I was younger and more innocent, okay maybe just younger, I volunteered in the South Pacific in the Marshall Islands as a High School Teacher. In case like I was, you were never taught that is where we tested the atom bomb over and over and measured it’s effects on humans and until recently some of those islands were left evacuated. More than one friend (including a couple who were there) have speculated that is where this cancer of mine comes from as they have a much much higher rate of cancer in general (http://www.ncbi.nlm.nih.gov/pubmed/20622547) however I remind them or try to comfort myself by saying this has no known dietary, lifestyle, genetic or environmental component.

The health care system, at least when I was there, was far less than adequate. And the funerals were interesting because since there really aren't big places they would take several days. A group of people would come in at a time. There were speeches were the family would speak and then the most important person of that group would address the family and the family would say thank you. A good percentage of that time because I was accompany a group of students on a small island where it seems everyone knows each other. I was the most important person in the room often since it was me and several students. Then we would pay respects to the dead by dropping off either a bar of soap or cash on top of the open casket (the soap for those who were most financially unfortunate).  And you had to look directly at the dead person as you were doing it and feel incredibly awkward (at least that was my feeling) or look away as socially inept.

I’ve wondered if the idea of dying from cancer bothers me less than most because of attending too many funerals there period, more than a few associated with cancer. It tells you something that the biggest birthday party there isn’t 18 or 21 or 30 but when a child turns one where they have a gigantic party because if you make one, odds are you’re going to get to make it to be an adult. While before all this started I'd been all over the world... the only thing that still or ever hung from my walls of anywhere I'd visited or lived was something from those islands. 

But while there in Majuro, it seemed that I often visited the hospital while I was there a lot and the first time we went I noticed a poster of a leper before and after treatment. In the first he looked bad and in the second he looked, well, normal. Before then, I didn't know that there was still leprosy in the world till that day nor did I know that we now have all but fully effective treatment for it. I was with a friend I’ve known since I was 15, Leandro, who was the one who had invited me to the Marshall Islands and in just a raw uncensored thought between friends I said to him, “Wow, we’ve gotten as good as Jesus” since the gospels tell stories of Jesus curing lepers.  He’s a good enough friend to where he came by a few days after I got back from Duke and that I may take an invitation to Boulder to see his family again.

The story I think of most with leprosy is the one in Luke 17 where Jesus heals 10 lepers. Somehow out of the 10, only one goes back and says thank you. Today, a check arrived from Virtual Fitness 4 Life (http://www.fit4liferaceseries.com) to Wonders and Worries (http://www.wondersandworries.org/) which was the donation they made for a father’s day virtual half marathon I did on the beach, the hardest half marathon I’ve ever done (http://pickingupahitchhiker.blogspot.com/2013/06/what-dad-cant-do.html). Wonders and Worries did counseling with Kiana alone and with me about how talk about this disease; they connected me with other people who are trying to parent people while dealing with serious disease (including one whose husband died of brain cancer). It continues to be the human connections that help me fear, hope and believe that there is meaning to much of this senselessness. Wonders and Worries were the ones who got me to take Kiana to her first princess ball, one of the happiest memories of my life (http://pickingupahitchhiker.blogspot.com/2012/04/i-had-ball.html). While the check took a while to arrive… I’ve worked for non profits and sometimes wheels move slowly but like the beast last weekend, if it gets done, it gets done.

I have no great answer as to why I’ve spent so much effort raising money for brain cancer research in specific and programs like the ones mentioned in various blog entries. While no one signs up for cancer or leprosy, since I've got it, I want to be like the one leper. Whether or not you believed Jesus existed or actually cured leprosy, we have a cure now. Whether or not a cure is ever coming for brain cancer… who knows and this blog mentions over and over that I’ve never prayed to beat it, just to do right with the time that’s given me. I am not a guy with a lot of money (September 2013, the first month without any cancer related appointments since November of 2010 is only the second month since then that the finances ended in the black, the first one being August 2013) but despite all the other things, my legs still work though they protested Wednesday's hilly bike ride and yesterday's hilly run. People are still silly enough to think that I am inspirational and I still correct their spelling that it's perspirational not really ever knowing what to say to that but if the fact that I’ll run a beast, or a half marathon on the beach or upcomingly bike 100 miles for Livestrong (http://laf.livestrong.org/site/TR/Challenge/Challenge?px=1004553&pg=personal&fr_id=1500), it that helps pay it somehow back and pay it forward is one of several reasons why I’ve kept doing it. The finish line photo from Spartan where I find out that my teammate won the charity race got me dancing more than any race I've personally won. The other reason is that it’s my therapy and how long I go, how often I go, and how hard I go keeps showing everyone how badly I need therapy.

So whether or not the day is coming that we beat brain cancer, I don’t know. But I know that I take medication that reduces my seizures (I picked it up yesterday and somehow that monthly reminder is harsher than the twice a daily taking it In). I believe that if nothing else those medications and the surgery and the awareness bought me some time. And the disease itself helped me focus on things like listening to a little girl and putting off mowing the lawn so she could pick the rain lilies to give to people (I don’t know if jealousy is the right word but it messed with me when she gave one to a “friend” in her first grade class and he also put it in her hair! Who does he think he is)
 And I believe these organizations and these sporting events and some great people and one amazing little girl has taught me even if I find no cure that I want to share at least one thing with that leper… to say thank you for all the ways they’ve saved my life. Even if all that means is that I appreciate picking flowers with a little girl. 

Epic Spartan Team Win

In my two previous Spartan races, I had done the course on both days trying to figure out how to let is kick my ass less the second time (both times my time was faster the second day than it was the first day). My first one was where Alexander Nicholas had led me into this world of pain http://liveepicbeepic.com/texas-spartan-race-with-iram-leon/. He owns a gym and it's guys like him that remind me why the incentive is fight or flight. Most of the time I'm running to the fight but I'm fairly certain hitting him would be harder than any wall I've ever hit during the race. He has won and places in some races and in the Spartan Beast he was in the top 20 and was the winner of his age group.

We were originally going to do the beast and then the Ultra Beast Sunday but Spartan announced it's first charity challenge. He put together a team pictured here to the side and was kind enough to let me choose the charity we'd be fighting. You can tell exactly from the team picture there why I wear a shirt during the spartan races and they don't... Obviously it's because they are less afraid of the obstacles cutting them because they run better through them ;). 

Most of the charity course was going to be some of the beast course but a much shorter. There are those who fight for only the prizes for themselves, there are those who only fight to finish and don't care where they place but neither I nor Alexander are cut from that cloth, trying to excel sometimes and share that with others.

I gunned out at the gate and someone caught a picture of us. Some girls have notice another of my teammates, Joey's face and abs (sorry ladies he's taken). Others have noticed that while Saturday I had a face of smiling and trying to figure it out, Sunday I went out looking a little more determined. I notice in the picture that the guy who started next to me was missing a leg. We weren't together for very long but we talked before and after the race and he finished it just like the rest of us and in the obstacles he missed, he did burpees in his own ways. Anyone who doesn't exercise in my book just ran out of excuses. Running is my forte. It had rained a good fair of Saturday and Saturday night after we finished so the course was a lot muddier and far more insane. But the first half mile or so was relatively flat and I was running with the top 3 in both the running and the obstacles. Then the steep hill began and I jogged as long as I could. At that point I was in 3rd and jogged up to almost second being the last to stop jogging before the hill just got too steep. And somehow there is when people started passing me but only Alex did out of my teammates. We got to the top of the hill... finally and there was the 8 foot wall which I swung over without my legs touching the top. Then I made a wrong turn but luckily Joey was right behind me and pulled me back. Then we had to start going down hill... and I quickly realized that for a guy who has had relatively unstable life, my stabilization leg muscles are less than adequate. I recognized why this was a ski hill as I skidded on my tailbone through mud and rocks and more people passed me down hill than had uphill including Cassidy, our third teammate chicked me. I kept going and I'm not quite sure but I think I made a wrong turn onto the beast course for about half a mile and then turned back. I got passed on the downhill again by the 14 year old winter whose team was fighting for her organization (https://teamwinter.org/). I'd be embarrassed about that but I've been beaten by a six year old in races before and this 14 year old has run a marathon in Antartica and been the junior championship in two time iron kids national triathlon champions. 

I wanted to run as hard as I knew how and miss no obstacles on Sunday. I got the first part right but did miss the spear throw on Sunday so had to get my 30 burpees in. And then it was the finish line downhill and I sprinted as hard as I could. In the end, my placement honestly didn't matter because the winner was decided by the first 3 people on your team to come through. Alexander would be the first overall winner, Joey would be our second placer and Cassidy would lead the women through. We would just inch out over team Winter with only a few seconds to spare. Fortunately, SpartanStrong who stated that we fight for those who can't was rewarding the top 5 teams. 

When I got to the finish line, I thanked Joe De Sena, the organizer/owner of all these  for putting on all the events and challenges he does even if they do involve burpees. I can't say I've practiced these much because why practice the punishment but he recently tried to break the world record for them (http://www.prweb.com/releases/2013/9/prweb11100551.htm). He asked if I was trying to win it and I said I was to new to this but I was glad my team had and he pointed back at the course and said, I think you left the grim reaper further back on that course cause if you struggled with it, I'm sure he struggled more (if you haven't watched the Spartan video I'm in, this will help you understand http://www.youtube.com/watch?v=auM8kK7qblg). 

Oddly enough, I ripped the shirt on the barbed wire, still the obstacle that terrorizes me the most because a seizure under there would be a nightmare. But I've never asked to skip it and I roll through it where I can since that's the fastest way. That comes with dizziness which is the sensation that has come before seizures. However, it's also a natural sensation from rolling. Anyone who thinks I'm always smiling needs to just see me under the barbed wire where I don't smile at all... But appropriately enough the rip it took out of my shirt was the grim reapers blade folding it some on itself which I hope means it will continue to be less and less effective. It certainly feels more so this way since this is the first month since November of 2010 that I don't have a brain cancer related appointment...

We were awarded a check for $2500 which Alexander without hesitation or pause said should be directed to the charities that have helped along the course of my journey. Like with the Spartans, I started pretty poorly along the course on cancer and had to have better more experienced people help guide me on how to do some things better. The Livestrong Cancer navigation center pointed me to Imerman Angels and connected me to someone else who had the same cancer (who while we've been in touch we had not met in person until the Spartan in Chicago), they pointed me to Wonders and Worries who provided Kiana counseling about the situation and me on how to share it with her, and together Seton hospital and Livestrong have created a committee which I help with that helps young adult cancer survivors, a group that because of various gets less attention than childhood and old age cancers. 

There are beasts who go through life alone and manage to do all right. No one can be there for everything. I am grateful to have earned 8 medals during the course of these spartans (2 sprints, 2 supers, 1 beast, 1 trifecta, and somewhere competing for one of my favorite two the charity race and the time I got to lead the kids race). But it seems to me that the majority of beasts and people we admire from lions to Lincoln's team of rivals are those who are able to somehow compete and collaborate for the best ideas appropriately. My journey has emphasized over and over that all the best things in life are shared with significant people. Even this race was better because one of my friends who regularly gives me a ride to the running workouts came up with me to do this event (we might have snuck over to Ben and Jerry's as well). I am pretty extroverted but even my introverted friends want to share their life with some people even if it's just one or two. So team sports are my favorite and I got better at running when I joined a team. I've been the guy who sits on the bench of teams, the guy who was the anchor on relays, and in this new Spartan adventures, I was just neither but felt closer to the benched player. I thanked Alex for helping me be a better athlete and in showing his kind spirit he thanked me for helping him be a better person. It's people like him and events like a spartan race, that remind you that sometimes you can have some good times even if it means you start running clean and finish rolling dirty... It was an Epic Spartan team that helped carry the win that I just happened to be part of. It has been an epic team that's helped me to keep standing through this cancer journey that just happens to be part of me and so it feels incredibly appropriate that the winning and winnings are a shared event. 

Beast Mode

Going to Killington for the Spartan Beast World Championships was unlike anything I've ever seen or experience, an incredibly awesome situation... It's tempting to leave that be the whole description because there's no way to catch it right. It started with attending a press conference where they were interviewing some of the athletes. They had some world class athletes from well... all over the world. There were there olympians who had won the New York Marathon, Olympic steeplechasers, a guy who had climbed the highest mountain in Alaska and trains in his garage when it's too cold by putting the machine on the highest grade and the highest speed, a guy from England who had climbed volcano's to take pictures, a 14 year old who had completed the ironman who had won a marathon in Peru in memory of her father who had passed from cancer when she was 9, guys who owned gyms and appeared to have more muscle in one arm than I have in my entire body... I am still new to this obstacle course racing and it's fascinating to see the variety of builds they have. There are guys there who have come in ahead of me that I would beat them on any road race. There are guys who come in behind me who could probably bench press me and what I can bench press but the guys who are at the very front have managed a combination of so many skills that it is incredibly impressive.


People have said when they see me running that I am in beast mode. I've never quite deciphered what that means but it was an opportunity to actually have a chance to earn the title of a beast. When I got to where the race was, only once in my life ever having gone skiing, I looked up at the mountain and just thought it was gorgeous until someone mentioned that we were going to be going up and down it at least 4 times in different ways. Then I realize I'd never seen an uglier mountain. I had tried to train on some of the steepest mountains in Austin Tx a few times and realize that was not nearly enough... I have been working on my upper body and doing some more hills up but didn't quite realize that a half marathon distance through that was possible but that didn't matter.

They announced a few people at the start including me as the last one. For the first time ever I was wearing a water backpack and they asked if I would wear a go pro camera on my chest for a while. Thinking it'd be kind of cool to capture your experience that way, I put it on. When you've never run with anything on at all and all of a sudden you're wearing both, it cramps both your style and your breathing but I figured it would be a way to help pace appropriately.

Then we were off... and it was about a half mile of running climbing over small walls and hale bays and rolling under them and then there was one hell of a hill. I'd ran heartbreak hill in Boston, I'd ran the hill of life in Austin and the steepest highway here from bottom to top, I'd ran some serious hills in college in Napa Valley, I'd placed in a race this year that went up 31 flights of stairs... let's just say there's a reason they save these for skiing (some a high difficulty) and there's a reason people take a machine up and slide down. There were times you could jog up, others were you picking up your legs higher than you did for stairs, crawling on all fours was faster on some parts. The Austin Spartan Sprint had less elevation on the entire course than that first half mile it felt like, the Chicago one in 8 miles had as much elevation change up and down as the Pocatello marathon had had over 26.2 and in Idaho those were mostly downhill. . This spartan beast course, in mileage about a half marathon, I would come to learn had over 5000 feet of elevation change and while at the end of the race I "would learn" that amount in my brain, my body learned it on the course a lot faster than that.

Some of the obstacles on the previous courses had been tough but they also were breaks at some levels in that they changed up the muscles. That would be true with some of the obstacles here but not often. I was proud that the obstacle I had practiced the most, the monkey bars was a breeze since I've finally gotten better at mostly from a cute 6 year old telling me I was too fat to do it well. I've done more pull ups and sits up and push ups and climbing on the playground in the last two months than I had in the previous two years combined and got the obstacles where it was just a matter of grip. But right around the halfway point there was a 60 lb bag carry all the way up a mountain in what felt like years though apparently it was close to half a mile up and half a mile down. Boy did the right song come up then, get rhythm when you get the blues. And in typical style some people smiled and others rolled their eyes when they heard me singing... I can understand both. While I still regularly carry my daughter since I figured the days are coming where she'll be too big physically or where she'll be too old to want to let me do it, Kiana's not quite up to 60 lbs. She's a lot more fun to carry and is a way better conversationalist than that sandbag was.

There were inverse walls, cargo nets, balance beams to climb over, tunnels to climb through. There were 6ft walls to climb, 7 foot walls to climb, 8 foot walls to climb. On the previous courses I had just thrown my legs up and used them to climb up the wall. On this one I had developed enough arm strength to where on one I hoisted myself enough and landed right on the wall between  my legs... let's just say that I sat up there for a bit absorbing the beautiful view at the top of the mountain realizing it was good I already had a kid because I was probably never having another one. But perhaps most comforting that on another obstacle I literally cleared and 8 foot wall without my legs ever landing on it.

There was a rope climb which was the least I'd ever struggled with it despite it being the latest I'd seen it on the course. I didn't get all the obstacles and so there were burpee interuptions. There was a water traverse that I have serious rope burns from. There was bucket full of rocks that you had to carry late in the game, tires and rocks you had to pull up on a rope. But somehow I am both proud to say that there has been exactly zero obstacles in the Spartan world that I've had more than one shot at that I've not gotten.  But perhaps my favorite/least favorite one was the one where at the top of a mountain they gave you a code 7 digit code that you had to remember and had no idea on the course when it would be asked. I've kept exercising because out there I don't have to think as much and now they were giving me a memory test. Boy do I wish I had the camera because over the next hour or two I said it two to three hundred times. But I'll tell you what when it came time for me to do that obstacle, I got it!!! The Spartan tested many of my weaknesses and memory was not one I was expecting but I was glad not to fail it that day. In case you're wonder it was Victor 053-8874 :)

On some of those hills, I fell on my ass (the toughest one was actually when I took a serious hit on a rock about mile 3 or 4, let's keep this PG but the tail bone is a rough place to feel bruised). There were obstacles over water like a Tarzan swing that I completely missed and landed in cold cold water on my ass. Under barbed wire and on certain hills, I rolled on my ass. At the end of the race, the guys with the batons knocked me on my ass. But what never ever happened was me staying on my ass. Each time I had to, I did keep going.

The Spartan races have a great logo on their shirt, established 431 BC. Out of curiosity I wondered if that was older than the marathon (it isn't, it's from 490 BC but the fact that my favorite events have been Spartan races and marathons, show that if I believed reincarnation was true, I had to be Greek in a previous lifetime) but I sat there and read about the Spartan race (pun intended), they definitely captured the spirit I fight for. While they fought with tenacity, they weren't fighting to conquer anything, they were just defending their homeland from a foreign invasion from the Persians. And the Spartan race of old and these Spartan races these days gave women more independence and freedom than anywhere near enough of the ancient or modern world does. Some of the fast girls put on these shirts for when they pass people that say "you just got chicked." I got chicked a lot.. And different battles and athletes have had different motivation, but mine has been the same as those ancient Greeks, to keep a foreign invasion away and to raise a girl who regularly chicks people.

Because there are points where moving fast is not possible (at least it wasn't for me) I chatted with more people on this race than every road race I've ever done combined (some before or after the race, some during, those during were mostly people who were taking a break to talk as they passed me)... there was a soldier who'd spent time in Afghanistan and was glad to be able to take on obstacles just for fun, a guy who had lost more weight than some of the most muscular guys out there weigh, a woman who was using this as her therapy for her mother's death, a kid with a cross country scholarship who ran with me a good chunk of it and we finished pretty close together. There was a dude who had ran a 50km trail race and said yeah this is seriously kicking my ass more.  There was a guy who had trained by hiking up and down a mountain with a bag pack. There were cross fitters who are more and enthuisiastic devout to their training than most people are about religion.

My life has had a lot of unpredictable obstacles over the last couple of years. It's had some serious hills with ups and downs.  There's been times where I just didn't hang the way I should have. There are obstacles like the barbed wire which scare the hell out of me because a seizure under there... But on these obstacle course races, it's somewhat comforting to know that I at least signed up for some of these, that I was running to them, through them instead of from them. If anyone goes out there and doesn't have their ass kicked they are beyond human to me. I'm in the best overall shape of my life right now and two days after the race I have more things hurting than anything else ever has.

There was a guy who we kept passing each other back and forth and he was like come on marathon man, you're falling behind. I don't know if he was trying to heckle me to get me to keep pushing but in the end it turned out he had dropped out. There was a point about mile 9 where I thought I could see the finish line and you could see it while you were climbing for quite a while... And I actually saw a guy that turned there and I don't know if he was deciding to drop out or was cheating to the finish line. And for just a second there, I thought about it. But then remembered going to Walden Pond after Boston and modified for myself...

"I came to these woods to move deliberately
I'll suck this water through this straw
And when it comes time for me to die,
I'll know that today, today I lived"

I don't know how much longer it was from there till the actual finish in time since I don't have a watch on but there were still more obstacles, more climbing, more pain. I had brought two packs of shot blocks but I had dropped the second pack somewhere and hadn't had any calories since the halfway point. I knew I had a charity race the next day (that will be covered in the next entry) I would actually make a slight wrong turn near the end and do two extra obstacles that were part of the sprint (a shorter race) finish but got back on and got the right finish because there was no way I wasn't earning the beast as an official title. It took me about six hours to do this beast, longer than brain surgery had taken, longer than a 100 mile bike ride had taken, longer than any marathon had taken... And Spartan has a challenge to do all three in a calendar year to get a trifecta which I did...While I am more sore, scratched, bruised and in pain in more places than I've ever been after anything but in the end, don't all beasts live like that as at least a part of their regular life? I don't know of anyone's life always clean and the path is sometimes where you can can't see much more than a few feet in front of you but in my book, the best, the beasts they keep going and I am grateful to have officially earned the title.  Arooo.

Spotless Mind

"How happy is the blameless vestal's lot!

The world forgetting, by the world forgot.

Eternal sunshine of the spotless mind!

Each pray'r accepted, and each wish resign'd ...:

I try to make these blogs mostly about capturing the present or looking forward but we'll call this a semi nostalgic once. A movie was made once, eternal sunshine of the spotless mind about a couple who after their break up continuously go back and get their memories erased of each other and yet somehow end up back together. The Eternal Sunshine of the Spotless Mind they titled it, borrowing from the poem above. 

It is strange to have memory problems when you had all but a perfect memory once upon a time... it is strange to imagine the premise of that movie that people would choose to forget the things in their life because the pain and the joy seem disproportionate to each other... and in trying to forget the pain... they are willing to forget the joy. Basic common sense would tell us that there are things where the pain isn't worth the joy and thus some things should not continue but I am not sure that even in those things I'd rather forget. I know some people see things through rose colored glasses and others seem to obsess over insignificant trivial details. Josh Billings said that there are people who mistake their imagination for their memory... and I think probably we all do to some degree which is why I always say as I write this blog... is this story true... no it's just what I remember.

There are things that other people do that I don't quite understand. Despite this massive tattoo on my arm, I remember the pain incredibly clearly and I can't imagine getting another tattoo again and it's been over 2 years. The first marathon I did I said I'd never do one again because it hurt so much but I did another one 13 days later... When are  our joys and pains worth each other is at best a personal decision. For me the pains of running and parenting are more than worth it but the ones of romantic love I've shown to be more than hesitant about. 

And so perhaps this is why I keep going back to my love affair with running, something I did since I was 8 and stopped and got fat, then started again and lost weight, then stopped racing and moved to sports and now for a guy who doesn't work seems like it is somehow both his passion and his occupation in a sense. It is a pain and a joy, never fully one, never fully the other, the equation tilting in both directions at different times. And so it is with life... but the reason this blog often has pictures is because those capture a moment and freeze it and own it. But every so often you get pictures later than expected... the one from the 2 miler that I won the non student division but went into with training mode and then realized I don't know how to not race, the pocatello marathon where I realized that for the first time ever running my first urban race that there's a beauty to that I'd never experienced. The fact that before the brainpower 5k group I was dancing trying to make sure everyone's smile was as genuine as I could get it not realizing someone was taking a picture of me... 

Those who talk to me most often realize that sometimes we have the same conversation more than once but only they are aware of it. Those closest to me and who get to engage with me more than randomly on occasion realize that my sense of time is incredibly off. This is a strange year because it seems light years since I won a marathon when it's barely been six months and since then I have ran in 5 different states with a sixth one coming up this weekend and possibly a 7th in November. And while most of these invitations have come with low costs they have also not paid any bills. There isn't a day that I'm not greatful that even if the bills don't lighten up that some of the thrills have been amazing. But the time between race to race is as far apart to me as it is to Kiana. It seems like forever because my memory is damaged but it's perhaps why I get along so well with a six year old because the simple joys of childhood aren't too far from the simple joys of my mind. 

And even while I nail down the George Clooney lifestyle... I still add songs to the hopeless romantic playlist, which is the longest playlist I've ever made. The latest song is Edwin McCain's I'll be wondering if I'll keep running away from these opportunities or at least embrace the possibility of an opportuinity...

I'll hang from your lips,
Instead of the gallows of heartache that hang from above.

I'll be your crying shoulder,
I'll be love's suicide
I'll be better when I'm older,
I'll be the greatest fan of your life.

And rain falls angry on the tin roof
As we lie awake in my bed.
You're my survival, you're my living proof.
My love is alive and not dead.

And I can't decide where in that song I want to cling more to... that I will hang to someone's lips instead of the heartache that hangs from above or whether I really have let my capacity to love in the romantic sense commit suicide. I do think the one line in there is that I'll be better when I'm older but I mostly translate it as I'll be better if I'm older... something that I have little confidence in but as the medical appointments get further apart perhaps a bit more. 

The pains of course are there... but the highs and low are ridicoulously apart. Brain cancer, divorce, custody challenges, finances going down the tube, somethings that will never be fixed, somethings that if they ever are will seem like it took as long as forever. And yet somehow by sharing my story... I've gotten to have some great experiences on the big scale but also sat and watched survivors and unfortunately watch people die from cancer... It's a strange life I lead and while I think we all want to believe we lead our own lives... that my 5k prs and my marathon PR with and without a stroller are both one second apart is a bit scary...

I keep up my "running slut" ways this weekend as I head to Spartan Beast in Vermont. Even some of my best running friends wonder why I don't just pick a distance and focus on that for a year or two... When you've woken up in ambulances a couple of times... for me at least... I'd rather different types of races and more of them than just spend hours and hours for a personal best of only one distance (though obviously I try to get the best personal time in every distance).  People have said the way I exercise I seem like I'm in beast mode but this is the first race that has that in it's title so I hope I earn it. As always, getting to the finish line is non negotiable.

Usually, because I have a six year old... I try to be the one behind the camera and it's rare I see/get pictures of me. If these are the choices this is simple realizing I get more joy and purpose when she wants me to update her pancake to look more like her so we add glasses and a bigger smiles. And well, I can't say I want eternal sunshine or a spotless mind. Yet while I would NEVER sign up for the last 3 years, I'd also not sign anyone the right to take away the memories whether or bad. But what I do suggest as I have all along is that anyone who reads this well... don't wait till your brain is as screwed as mine before you do better things with those who matter. And write some of them down to remember it and some pictures to semi relive them. And then the spots in my mind are somehow simultaneously the sunshine.

Hasn't Been Long Enough

Today is the 12th anniversary of 9/11. As I dropped Kiana off at school parents were doing what we humans do in moments of trauma, sharing where they were. Someone was on their honeymoon, someone was at work where nothing got done by the entire office, someone was actually on a plane that got planed in the midwest. I am more than embarrassed to admit that on 9/11 I was high. I hadn't been doing any illegal drugs but the day before I'd gotten my wisdom teeth pulled out and it was the first time ever in my life I'd taken any drugs of any sort. I had apparently taken more than most people to wake up from the gas sedative on 9/10. And the next day the mixture of the rough night, the vicodin, and pain was making me think less than clearly and I was just laying around watching TV when I saw the planes hit the buildings and mocked what I thought that was the most unrealistic soap opera plot I could imagine (that's what I had been flipping through). It the next few minutes as I realized it was new immediate sadness for anyone on that plane or on those buildings set in and immediate guilt for having derided someone else's tragedy.

I have mocked my own health issues right from the start and many times since then and encourage people to mock my brain because humor is my coping mechanism. But there has been more than once where other cancer people have struggled with my approach. In interacting with them or when doing things for different groups, I am more careful with the jokes than I am with my friends or doctors. But when something hurtful happens, we often wonder as we make jokes whether it's "too soon." And there are some things that like 9/11 the pain sits long enough to where humor in a large scale it will never be long enough.

And some of those things still sit through my head about the various trauma from this brain cancer/life part II experiences. The restaurant where I had the seizure that started this all I only returned to once. The second time I woke up in the ambulance it's a place we run by all the time on both races and training runs and it took me a while before I went out there again (ran by it again twice last Thursday). The George Clooney approach may well be as much about self protection from having been left in the middle of  night in the midst of the biggest mess of my life as it is about the righteous proclamation that it'll be easier to head to the Grand Canyon if I have less attachments. Even when there's rare times I think that maybe it's time to consider having a girlfriend, I have to deal with drama from Kiana's mother and realize no, it hasn't been long enough.

As I raised money for the brainpower 5k for the 3rd time, one of my friends whose donated some of the times said, man you've raised money for cancer stuff a lot since you got it, when will it be enough? I don't have a good answer for that but it is true that in less than 3 years I've raised money for 5 different organizations about a dozen times. I don't know when it will be long enough but that's not now.

I went and did a different type of workout this morning with trail running stopping for  pushups at the bottom and weights at the top hoping that translate into something in the Spartan beast coming up. I biked 35 miles in training mode for the first time in a while because I have the Livestrong century coming the month after that (http://laf.livestrong.org/site/TR/Challenge/Challenge?px=1004553&pg=personal&fr_id=1500). And I did my nails with Kiana with stickers for the first time. Because the question at my  medical appointments aren't about medical stuff nearly as much about can I keep raising a kid and can I keep exercising, the why and how I get through the day. And while I do my best at both... there are times I am more scared doing it than anyone besides me is ready to acknowledge. The long term insurance I'm on is deciding whether or not I qualify for renewal or if they've taken care of me long enough. And at the appointments towards the end of the year, they may let me drive because stability has been long enough.

I have never gotten near a PR on a race I've thrown up in. But I have finished them all, trying to listen to the heart that's not fully healed and perhaps will always have a hole or at least scar tissue, I don't know that it's about mental toughness because that one always has a hole and scar tissue, or the body which the way I push it probably  has some holes and scar tissues as well. There are those who say run through the fear; in simple frankness, I never have. I've just learned to run with the fear, despite it, from it.

The title from today's blog is from an Eric Hutchinson song (http://www.youtube.com/watch?v=A7j3u4b3lm4):

"i feel as if i spoke too soon and ruined the whole afternoon
a feeling that we're more than doomed is creeping up inside
and good as it was bound to be there's something about you and me
it's negative in chemistry which makes it hard to hide
and it's no surprise when lights are falling
it's bound to reawake some primal calling

it hasn't been long enough to even begin to think it's alright
i'm only concerned with the way we end up
so put up fight if you must but we know that our trust is undone
it hasn't been long enough "

The simple reality is that I trust, run, and love with all the conviction I've got left (or all that I have left that I can admit to myself) but some of those will never be fully back. I've wondered if I slowed down too much in the races where I threw up, I wonder if the walls are too high with the GC girls, I wonder if I over worry with headaches and dizziness that may just naturally come from the workouts I do. I don't have clear answers on whether or not to gun with more conviction for that because as the song says "put up a fight if you  must but know that our trust is undone. it hasn't been long enough."

But I got to catch the 9/11 memorial when I headed to New York and it's gorgeous. And I got to do some hill repeats with weights and push ups in between them to get into more Spartan mentality and it was painful yet gorgeous. And I made breakfast for a gorgeous 6 year old six this morning that made both of things pale by comparison.  And well, while this adventure of brain cancer started in November of 2010, it wasn't until November of 2012 that I didn't have a medical appointment (http://pickingupahitchhiker.blogspot.com/2012/11/thank-god-and-fuck-yeah.html)  and it won't be until this month of September of 2013 that will be the first one without any legal or medical appointments regarding cancer. That definitely took way too long but it has me smiling that it arrived. And so last night after Kiana said that I hadn't talked to her long enough when I was putting her to bed and as I continued to reflect that tragedies like 9/11 happen or brain cancer that affect too many people and individuals simultaneouslly, that things like loving Kiana well it will never be long enough. And even if I am never clear when it's been long enough to shake some of the trauma of the cancer, I know that I'll keep giving the good things in my life as much heart, body and brain as I can muster to make that time last a little longer.

The Rainbow Connection

The 3rd Brainpower 5k was today. The first year it was the first race that made me think it wasn't time to hang up the cleats. Somehow in Austin's first ever brain cancer research race a few months after all my story with brain cancer had started in 2011, I managed to win it and more importantly had enough friends to be the lead fundraiser but only took one friend with me.... The second year I got lost in the course and got second in my age group and second in fundraising. More importantly, it was the very first race Kiana, my mother and I all did together which kept me focusing on the best part of life part II, that life is better shared. We had several friends who came out and did it...

Then this year, I was one of two honorary co-chairs and with the help of some of those beautiful people, we created what will help the guy withe memory problems remember this as one of my favorite races ever. One of my shipmates send out the invite to the group two years ago. This year lots of them came up for it. I got up worried how well I could hold this since it was one week after a marathon and the legs were nowhere near back but even as I was getting dressed, I realized that this year, my team had almost 60 people on Team Scarecrow (if I only had a brain), people had been kind enough to contribute to where people had donated 150% of what they had two years ago (over $2400)  and totally my team had raised even more (over $4300)! I did a few pull ups to remember before I'd even walked out the door to get a ride from one of the shipmates that we had bigger wins before the race had even started.

And so we went to race... and there I saw some people that I've met through this journey, some much wiser, some much younger, some more, some less scared, some who are commemorating people who have not survived this disease. I met some new ones, one who had literally finished chemo two days before today's race.  We had the survivors walk through the crowd and both gratefulness for still being standing and some level of guilt were the emotions before the race kicked off.

I struggled with the playlist for this race... As with all races, I was going to gun it since that's all I seem to know how to do but didn't know how well the legs would hold since I hadn't been in 5k training mode and I'd ran a marathon this week. So I got home on a stormy night where when I'd headed out, I'd seen a rainbow. And I remembered the simple reality that every race I've managed to keep my gut together and not vomit was one where it had been overcast and/or rainy. The half marathon that got me bib 911 was a rainy one, the marathon I'd put off brain surgery one was an overcast one. The races I've thrown up on are the ones which there wasn't a cloud in the sky. Cloudy days aren't always the best in life for many reasons but they are the only ones in which rainbows happen. And even on the days with storm, somehow nature has conceived of that rainbow which splits up light and makes us just wonder at the beauty that can exist in thunder and fear. And so Kiana was with her mom this weekend so I called her the day before and started the race with a song her and I sometimes listen to on stormy rainy days:

Why are there so many songs about rainbows and what's on the other side?
Rainbows are visions, but only illusions, and rainbows have nothing to hide.

The three of us in the lead were together till mile 2. In the end the guys who would end up in 1st and 2nd had more kick then me and I came in 3rd over all in  18:18. This was first in my age group and while it wasn't my personal best, I realized that even exhausted and one week after a marathon, I had come in a faster time than I had 2 years before so it was my best time ever in the brainpower 5k. And embarrassed about the fact that last year upong being frustrated at being lost I'd walked away and not paid attention to teammates (which almost happened this year) I immediately turned around and cheered my teammates on one by one.

Last year we ran and then kind of all went home. This year we had a potluck at a friend's pool where we hung out most of the afternoon. This year we stayed and realized we had won and/or place in a huge percentage of the age groups, genders, divisions. We were the 3rd largest team, the 3rd best fundraising team in a race where I came in 3rd place and 3rd fundraiser on the races 3rd year. Jerry Seinfield makes a joke that he'd rather be the bronze medalist because then at least he placed rather try to have to explain why he didn't win. I don't know that I'd go that far but I'd rather come in 3rd with faster times 2 years later than come in first with slower times. I'd rather come in 3rd with more money raised than winning fundraising with less money raised personally or totally (the race as of today raised almost 78K).

There are days I recognize that in some financial, emotional aspects brain cancer has made some of my life worse. But today wasn't one of them. Do I think 78 thousand dollars will cure brain cancer? Probably not but I hope and dream that it's a powerful seed or tool along the way. There were some sweet couples on my teams, a couple of people who got their first 5k in, some people who dreamed and achieved their best time.
So with every ounce of me that matters, I am pleased this brainpower 5k means more to me than the first one I won two years ago. That win helped me focus on that while you better believe I'll keep pursuing them there are far bigger than things than first place medals. And while, I'm not sure we'll ever catch a rainbow of the cure to brain cancer or a perfect race or perfection connections sometimes for me it has been a colorful beauty in the storms of brain cancer or the breathing in hard races that makes me think that in my clouds of doubt

Someday we'll find it, the rainbow connection, the lovers, the dreamers and me.

Universal Health Care and the Bully Pulpit

Be warned that this blog is about how a guy hopes and copes. Today, we’ll call this one of the coping entries.

At Pocatello, a couple of people who are medical staff asked why I didn’t use the speech to advocate more for brain cancer research money… or for Livestrong… or for universal health care. I think all of those things have been done in here in one way or another but the other thing that I’m made clear is that core of my message is share a healthy life with people you love. That’s the number one priority in my life and number one messages and everything else is a far second, 3^rd etc. But there are days where you understand exactly why those other causes need more advocates and why some people make it their full time energy. And for me, today, today is one of them.

By coincidence, today was the first time ever that I had my latest medical bill and utility bill side by side. The utility bill had the last 12 months worth of usage, the rates at this level, that level and how it broke down into electricity, garbage disposal, water use and waste water use. The medical bill said office visit and the amount. For each one, the amount had been different than the previous three times. This is exactly the way the last 4 of each bill have used… the difference being that the utility bill explains why it is different and there’s some explanation, the medical bill says nothing. I am a guy without health insurance and in simple financial terms they are literally making more money from me now than they did when I health insurance. However, in Texas, you can’t get health insurance once again until you’ve been cancer free for 5 years, something I may never achieve (there are those who theorize this may change when universal health care kicks in but even our patient navigators say they aren’t clear as to how that will pan out in this state since our governor is a steady opponent of the federal law). I called and tried to get an explanation last time and the time before to no avail. I am brain damaged but still aware that there are things like restaurants milk and car gar and utilities that have ups and downs but they have to provide some explanation and you have some some choice in the matter and awareness before making the purchase.

It doesn’t have to be this way. Let me make this clear, all  my doctors, whether Friedman or Desjardin at Duke or here at Seton, Perurena and Valiant here in Austin are brilliant, trustworthy and amazing doctors and humans. Their character and the years they put in medical school make them worth their weight in gold. But there are multiple views of the health system I see. At Duke I pay when I get in and that’s the bill for that day with no set time or anyone feeling like we’re rushing things, at the MRI and at my pharmacy, there’s a way to budget because they charge consistently (a simple reality I knew what my MRI in December was going to cost at the beginning of the summer). At Seton, even though I asked since my last medical appointment, approximately what the next one would cost, no one would provide even an estimate. This was not an emergency appointment or an ambulance ride, just a standard scheduled one. Three of the four appointments felt exactly the same but the bills were all different.  

Just so it’s clear, I am not sure that universal health care is a clean cut equation. In car insurance, if I have accidents or tickets, my costs go up every six months for a while whether or not I have another claim during that time; I believe that to be fair. In health care, if I choose to engage in self destructive behavior like being lazy, drugs legal or otherwise, or slowly commit suicide with a spoon and a fork, and it eventually costs me some serious health benefits, I am not sure that the rest of society should have to underwrite that unevenly. With that said, if you have a cancer like mine which has no known genetic, lifestyle or environmental components, I’m not sure that it’s just that you should have to fund that either. How to balance that like car insurance or home insurance or which one is more unfair I will let more intelligent people than me debate.

There are those who thought that various government program like social security, world war 2 the Iraq war and now Universal Health care were shoved into the American world by various presidents’ bully pulpit. I don’t know what to say about all that but I’ve used most of my speaking circumstances to promote exercise and more efforts at relationships. With that said, I have turned down a couple of invites both local and otherwise that would have robbed me of time with Kiana because I’d rather do it than talk about it anytime. But I am well aware that those who have made some of the best mistakes and worst awesome decisions (yep you read that correctly) are absolutely neccessary for humanity to improve and for the good in humans to win. But I hope we invited electricity, the internet, better health care not because they are their own end but because they let the connection be easier and more long lasting. The worst cells in the body are things like cancer which just consume at the damage of everything else. There are those who would argue the best ones are the white blood cells which have a short life span in order to save other cells. Perhaps the argument is the best ones are the ones that find a balance between the give there. That can be said of the food chain etc. 

There were remarks made against universal health care having “death panels” about financially deciding what was worth giving medicare money to buy people a few more weeks or months versus costs. You can decide what you think about that but I have three things that I keep track of, two of which have been mentioned in here (even the guy who rarely censors has one very significant thing he’s never shared with anyone). If there ever comes a day where my neurological capacities go below a certain level or if there comes a point where the medical bills go above a certain point (as I’ve said multiple times, I am not leaving my kid broke. I’ve accepted limits in many areas even swallowing some of my machismo to get more time with my daughter but leaving my kid broke isn’t going to be one of them or watching people say goodbye to a guy whose been long gone and is only an echo inside a body won’t be another. Some good friends have said they would go into debt for the rest of their lives to spend more time with their parents who have illness and/or have passed away but I’ve not heard any who have said so about inflicting that on their child). If those or the third (insert whatever you want to imagine) that is the day that it’s time to take advantage of Texas’ other law, futile care which allows you to refuse medical treatment that you think is not helpful. That’s the day it’s time to realize I gave it what I had but you can only put off dying for so long. Then I pray and hope I have the courage to recognize all I've got left to give is to become a white blood cell and not a cancer one. 

With that said, I think like my utilities, or my grocery bills, my medical bills are for me a fact of life. But I do not think that it is unreasonable to ask for an explanation. So on a friend’s suggestion from the medical field who knows that I don’t want to just complain but to at least attempt to reach a goal, I am going to be working on a letter asking for an explanation of why bills all which state nothing other than office visit have such variance and why literally no two match. I am not arguing that I should not have to pay the bill nor that anything is unfair just asking why they all come with two words and different pricse. I have never missed a medical payment per the agreement we’ve got so. Will I get an answer? I don’t know but if I don’t ask, I certainly won’t. I am sure that it’s become money makes the world go around and even ESPN has said that they sometimes film pieces they decide not to continue for financial reasons. I may well decide one day that my dying is more financially beneficial than me living for my daughter so I have no great argument against that.  With Seton however, I don’t think it’s unfair to ask because literally my life, the custody of my child, my driving privileges, what substances I can and cannot take is based on their guidance but I am not six so can you give me some explanation as to why you bill me how you do?

And while we’re in the process of asking for things that may go unaswnered. When that lawsuit ended, one of the people commented on my facebook status that I had over a hundred likes and tons of people comment on my facebook status about court and that Andre Dumouchelle made a remark that had 5 likes and 4 comments (picture here in attached).  I sent him a message then stating plainly that while I don’t feel I owe him any apologies for any of the situations nor do I expect any, if he really wants to agree with the judge that we should focus on the best interests of my child that he could pick a place and we’d go grab a beer and that outing is definitely one I’ll pay for. Unsurprisingly, that offer went unanswered but the offer stands as long as I am standing and as long as he’s involved in Kiana’s life.

People have asked if I’m not angry about having cancer (who am I supposed to blame for that?). They have asked if the feedback I get from the “inspirational” stuff doesn’t make me think that maybe this is why this all happened (I don’t spend any time thinking about this). Or they have asked if the fact that the birthday I am so fond of 8/8/80 which is father’s day in some Asian country make me realize that I was supposed to be a good dad. I don’t know who makes those types of decisions in the universe and I certainly have no capacity to speak for them. In regards to those things, I simply think of Lord Tennyson that ours is not to question why ours is but to do and die.

Those things are beyond my scope but billing, parenting, communication are well within the human scope. So Seton will get a letter from a guy whose released medical consent for them to talk to the media, his exwife, a guy who unless I guess it pisses them off enough comes out in an ad for them in a couple of weeks asking for nothing more than an explanation. And Andre who says I publicly slander him now has a chance to show that he can be the bigger man and we can put aside our stupidities and if nothing else open up communication for the sake of Kiana.

I ran today and those were the thoughts I couldn’t dismiss. I put my daughter to bed and still hadn’t dismissed them. One of the shifts in my neuropsychological report is that I’ve become more impulsive and you may decide that writing this or committing those actions reflect that. Maybe the invitations will cease because I talk like this from my primary pulpit which is this blog (I’ve never said anything like this in an actual presentation, my social skills aren’t that bad in person among strangers). But today while limping from the marathon, I walked Kiana to class. Most days I can outrun a lot of humans and today I struggled to walk with six year olds. And on days, that I'm frustrated, and this blog and the running don't seem like quite enough therapy, I step back and breathe. And my memory is not bad enough to where I forget the only reason I care about my health is because Kiana is the brightest star in the Universe.

Disregard the Rest

Simon and Garfunkel's old classic The Boxer has many lines I relate to... Shortly after races that have gone bad for various reasons, I am very frustrated. After the first marathon I did after brain surgery where I did not get my best time (it would be a few hours later before I'd learned I'd won the cancer survivor's division), I went home and skipped the running group's party to... pout. This year, 2013,  went better but still no breaking 3 but I was proud of the fact and organized the party realizing that while I spend hours working on trying to take a few minutes off races that the only reason I've been able to get better at running is because I spend most of those hours with a running group. I really do believe in the dynamic and beauty of synergy.

But the line from that Boxer that's been singing through my head is "a man hears what he wants to hear and he disregards the rest." I take people to medical appointments with me because the simple truth is that they often catch things, some small, some important that I would have missed. They have told doctors to tell me that again on things from medication to shifts etc. I've been trying to analyze if there's anything else those races have and don't have that went well and I can find a couple of factors. There was a variety of factors in each one but the only I can think of besides my theory of that I gotta bring Kiana to the best ones :) is that everyone of the vomit ones were not a cloud in the sky day and ones where the meals were social ones rather than my standards at home. All the ones were there was no vomit were overcast days even though there was a huge range of temperature. My medication has a dizziness side effect which is where I think the vomit appears to come from and unlike in training where I stop and drink water and I have some say in running under the trees, here I wonder if the sun aggravates. I have a cancer that has no known genetic, lifestyle or environmental components... And this vomiting may be as random as that or why do I throw up somedays in normal life (part of the challenge of the puzzle there I just step out of what I'm doing and go back and pay no attention to the pattern).  I've never figured out and I only try to figure it out when it happens in races and there may be nothing I or anyone figures out in the end but you gotta try. That's how we arrived at science, theories and attempts (which speaking of if you read this and been meaning to donate to the BrainPower5k, this is the last week to do it, http://brainpower5k.kintera.org/faf/donorReg/donorPledge.asp?ievent=1058997&lis=1&kntae1058997=6BE831B950AB434895474C10F4A8AE46&supId=356919075).

But the mistake that I am proud to have realized is to never make the marathon only about the time at the end of clock. This was the first time in my life, I've ever gone somewhere I don't know without someone I know to stay in a hotel by myself. That actually had me nervous because I took this invitation for various reasons but one of them was definitely to explore some of Idaho, a place I'd never been. But even afraid with the face name recognition thing, I tried to meet more and more people. And while almost all of them were trying to ask me more questions about the brain cancer stuff or were incredibly kind about how the speech went, I tried fairly successfully to listen better and love the plethora of human stories. There was someone who had ran 200 marathons in 86 counties, someone here who completed their round the country in every state and this was their 50th marathon, someone whose wife had passed away from cancer and to raise money for the American Cancer society had ran 100 miles in just under 24 hours on the outside of a track, someone here who ran all the way up to top of the mountain to run the marathon back down with his brother and his father, a man whose young infant had just gotten diagnosed with the same cancer I have but he was grateful that at that age the survival rate is much much better, girl whose entire goal on her first marathon was to beat Oprah's time and achieved it, a 70 year old woman who is going through cancer treatment and her and her husband do a marathon shortly before the next round of chemo, the woman who broke the guiness book of world records by completing 129 marathons in a year this weekend.

I went to an Idaho state festival where, like I did in my age group for the marathon, I took 3rd getting beat by a rather young teenage girl and a large guy. So back to back bronze medals :). I played my first round of disc golf ever using actual disc golfs (3 over par). And one of the staff who saw me limping up and down the stairs pointed out that well, if I ran marathons I could probably move more smoothly everyday. But she also had only once left Idaho despite being a few years younger than me just saying she just works and goes home and I tried to explain to her that despite the marathon not going as well, as I'd hoped, that I was glad to catch a new place. Who knows if it's because she was staff and was being polite but she said she'd start thinking about taking a trip like I had to a new place for the experience of it.

I still recall that before this all started that it was the year I'd traveled the most. It was mostly international which is why one of my new year's resolution, still unfulfilled was to go to a new country this year. Between the trips to Duke and the invitations this year that came from Gusher, this year may pass that even if it's all domestic.  Today I head to the crater of the moon so maybe it's more like going to a whole other world with some new friends and then I fly home tonight. But while gimpy and with my brain not all it used to be, it's been a privilege to catch more of  humanity, far more of the world than I expected in one of the smallest towns I've ever been to. And I am pretty damn happy that while my brain may not catch all I use to, and even if I didn't get the time I was aiming for, there's a lot less I disregard.