I'm less than 2 weeks away from being above average in the diffuse astrocytoma world, the 7 year median survival rate is November 5, 2010. In different cultures, we make a big deal out of certain birthdays, quiñceaneras for hispanic females, sweet 16 for females here in the USA, bar mitzvahs for 13 year old Jewish boys, 18 and and 21 for legal reasons. I once was a volunteer in the Marshall Islands, where the biggest birthday party is the kemem, the 1st birthday party. In a country that once upon a time had much much higher child mortality rates than most places, they had figured out that if a child got to their 1st birthday party... well their chances of making adulthood were significantly higher. I didn't do much of anything for Kiana's 1st birthday party... didn't see a point in spending much energy in something she'd not remember and could barely figure out what it was but we've partied up a few since then.
I still don't do much for my birthdays since I was born I've gotten over it but I'm excited about November 5, 2017. It's funny for being born 8/8/80 my age for the 1st 10 years of Life Part I was the last digit of the year. When you get cancer on November 5, 2010, it's turned out to be true for Life Part II as well. I think some good things will come if I make it to 007... A few years ago I wouldn't have bet it on but less than 2 weeks out, I'm recklessly optimistic. What celebration plans do I have? My mom is coming into town to cheer on a race I've looked forward to and planned since this summer where Kiana will cover her longest distance yet, 10 miles at 10 years of age. Even with a damaged memory, remembering this upcoming 5th of November I think is likely.
But that's something I planned and trained for, the chess player in me thinking a few moves in advances trying to keep things in check. How we got here was team work and reacting correctly and that has absolutely showed for the last few weeks. The day after the last time I blogged I raced the 80's 8k and while I had talked a lot of smack to my bromance Chris about beating him, he actually would win the race outright a PR for him and his first overall win (and a faster PR than I have in that distance), something he credited my talking trash to (in an interview, in a podcast cause that's when you want your trash talk exposed when you're on the losing end). He did say it got him to check out the course more but I still had the cooler outfit and I mean that's what really counts in races right :)? Obviously I wish I'd beaten him but as I tried to catch up to him in the last mile I did finish with a 5:30 mile but so did he so I ended up in 3rd place overall.
I actually wasn't signed up for that race till after the Philly Half went rough. I was wondering if it was a mental collapse and I'm not the type to make excuses but we were trying a new medication to try to fix my piss poor problems which apparently can bring on exhaustion and lower blood pressure. Let's just say that's now in the trash and while we prescribed another medication to try... I have not. I like to think I'm alive due to moving so much so let me keep doing that and taking medications for side effects of the seizure one that have other side effects is not a price I'm willing to pay. I almost bought it when my doctor said look the side effects of the brain medication you're on are way more than this one but life comes with pain so accepting that will make it easier from here on out.
There was certainly an individual who put that in perspective. Last few years, a couple of UT professors have invited me multiple times to speak to their students. I used to think of it as flattering but it's probably like when I let Kiana help with the cooking or the librarian at school uses her as a librarian's assistant where you're going yeah I'm helping the overall situation and helping an individual by making my load lighter. But one of the students in there was a young man who was in a wheelchair, Archer. It was a political history class and after I spoke the professor did his lecture and then let students opt out of the end of class where they engaged in political conversations. Archer and the Professor were on opposite ends of the political spectrum and clearly thought the other one was wrong about their views on the role of government (despite that they somehow could think that without thinking the other was evil). Shortly after that, Archer asked to be pushed for the race that the professor and I had encouraged the student to run, 10 miles and we pulled it off in a solid time, the 1st time I'd been behind a stroller in about a year and Archer was a little tougher to take up hills than Kiana. This year Archer asked us to step up for more than a mile in his shoes in an event called, Archer's challenge. People had to do their regular tasks from a workday to a workout in a wheelchair. We put together a group of runners who did a relay, A RELAY!, of a little over 3 miles and it took 4 us more time to do that loop on a trail we all regularly run than it had taken 2 of us to run 10 miles behind Archer the year before. We appreciated Archer spending sometime in the middle talking to us in order to get the job done. It was not a timed event but someone on our team might have noticed we took 3rd place.
I'd go from there to an ultimate tournament where we won or lost every game by one point so they were long drawn out games (on the plus side there was an ice cream break in the middle of the tournament where I defended my title as the ice cream eating champion!). I got home to join Kiana for her longest training run yet, an 8 miler. The next day I got to pace a half marathon, 1st time doing so trying to keep 1:40 pace and I ended up with a 1:39.57, thinking I got my job done. But between the two days, my hamstring was cramping up bad at dinner. I went and laid out on the bean bag. Somehow life has been kind enough to give me some great family and my mom got me a drink while Elaine and Kiana came and just chatted with me as I tried to roll it out. My mom caught a picture of us all on the beanbag. That smile is nothing but thankfulness.
Unsurprisingly, the guy whose not sure whether or not he'll make 40, doesn't want to miss any chances. Last year we had a Ragnar relay team of 8 and we won the coed division and took the 2nd fastest overall time. Somehow a few days before the event, we collapsed and were down to 3. So I asked those who remained if we could just turn into an ultra team (so instead of 15.5 miles we'd all have to do 31 and find a 4th). Everyone agreed and we actually would end up with 2 people saying yes so Elaine whose been coming back from an injury bowed out and we turned into a men's ultra team. During the race, one the guys had a recurring injury come up and in order to fulfill our commitment we had to rebalance the rest of the over remaining 100 miles between 3 of us. Phil had never even done a half marathon, Mike was 2 weeks removed from a marathon, and I'd never done an ultra and this is the 1st year since I started that I haven't done a full... Low energy, high heat and humidity and Elaine turned into team manager/babysitter keeping track of where we were and needed to be. During my longest one time stint of 15.5 miles that started at 3 AM, I kept it going. We kept moving up in the rankings from 7th to 5th to 2nd but then back to 5th and then to 4th... I might be a bit competitive and I saw the rankings in the middle of my longest leg we were in second place. A song inspired from Hamilton was playing and I shouted it in transition to some cheering and then I went and lived it out knowing how far we'd come. I'd get about 3 hours till my next leg but when it was done, we'd won the Ultra Division and we'd gotten the job done.
But there were still promises to keep after a night of no sleep so we went home and went to bed at 5 PM to get up the next morning for the Livestrong Challenge. The first one I did was my fastest 5k at the time, not even owning a bike. The next 5 were all Centuries, 100 mile rides and I would even say that I have ridden 500 miles and I would ride 500 miles for Livestrong. Perhaps I will but you gotta ask why did I do those all by myself? For a guy who was in a video 5 years ago where I said the smartest thing I've ever said is, 'you have to work on the relationships you want to keep' it's a little bit odd that it wasn't till my 7th one where I rode with Kiana on her longest ride, 20 miles for the 20th anniversary. This year I rode with Elaine where she rode her furthest ever, 45 miles. I know we like individualism and I'm certainly proud of many individual successes but it's the team ones that are closest to my heart. Life is better with good teamwork. Relationships is my favorite why and how to get the job done.
'Take up my message from the veins
Speaking my lesson from the brain
Seeing the beauty through the pain'
I never can quite decide whether my approach to accepting that some of life will never makes sense is a sensical approach. Having a cancer that has no known dietary, genetic, lifestyle or environmental components is something I can never quite balance whether I've given it too much thought or not enough of it. It reminds me an old quote from college that there are things that if you think about too much you'll lose your mind but if you don't think about them at all, you'll lose your soul. They already took out some of my brain so I'm going to keep fighting for my soul.
But there's been a lot of things that challenge the mind and the soul, destructive forces in nature, some we call political, others we call man made, others natural. The labeling or fault is obviously an important part of an equation to avoid repetition or get better at preventing... but while the past is prologue, the prologue's point is to get to fully appreciate the current story.
I see people who say they have learned certain appreciative lessons from things that were destructive. In fact it's a regular occurrence in my life of people who say they are glad they got cancer because they learned to appreciate 'this' or 'that' because of it. I have a hard time saying that because I don't want to be thankful for something damaging. It's like I prefer learning from other people's mistakes, I just don't have enough time to make them all on my own. There is a friend who has heard me and another person tell their stories about cancer. He says it's very interesting to hear us talk about it and he wonders if the reason we sound so different is simply the age we got cancer. He says me getting at age 30 put it in perspective and made me appreciate the shortness of life and the reality of mortality. Our other friend beat it in childhood and he says it made him feel invincible to get through that and that our speeches come across that way even if some of it is the rhyme of getting through the challenges with the right company, the right attitude.
I was in New York last weekend with Elaine and we didn't throw away our shot at seeing Hamilton and Cats and Museums and memories that will last a lifetime. But while I was there I also had a few meals with people as I sometimes do when traveling that are I try to keep off the radar. It turns out if you're like me which is old fashioned (or perhaps just old) I can have very meaningful moments with people without hastags that I'm the only who has to like them. I had dinner with a friend's mom who passed away from cancer this summer. It happened too fast and I've kept in contact with her mom who says she appreciates and says often I'm the only one who checks this regularly on her. I've always thought that if I die of this there's no one I'd have more sympathy than my mother because we're not supposed to bury our children. I met her on a First Descents climbing trip which I raised money for the last time I wen to Boston. And when I'm completely honest with myself I wonder if staying in touch with some of the families those who have passed is a way to still try to reach out to them in a more tangible way. If it ever seems doing so brings on harsh reminders since I am also a cancer guy... I fade away but I try to make sure they never do. To this day, having been to too many cancer events, I've yet to go two full years without someone I met at one of them dying (and some of these have been events where no one was active and there were less than a dozen of us). I've raised money against cancer in general and brain cancer in specific hoping that eventually cancer goes the way of polio and leprosy where it's all but irrelevant globally and we just talk about the people who have to live with the effects of once having had it. Maybe this bar is too low but I just want to get to one where just two years later everyone from one event is alive, one day where everyone lives even if just a short while longer. She was supposed to be running the New York Marathon this year.
I also once again reunited with my friend Dave, the widow of someone who was supposed to be running the New York Marathon 3 years ago when I ran it. She would die on the 4th anniversary of my cancerversary of brain cancer, November 5, 2014. It is those type of events that always both increase the survivors guilt and the thankfulness to still be standing. The 7th one is less than a month away, a big one because it's the median survival rate of people with the surgery I had and I suppose the day after that I become above average.
I reunited with Alexander, the guy who volunteered to lead me through my first Spartan. I'm on my way to my 5th year of trifectas if all goes well at the end of the month. He was the first to hand me a medal something I've passed along plenty since then, handing out happiness. He heard about me from the media and was there to help a cancer guy but we became friends. He's become a father since then, entered the Guinness book of world records and well the evening before I headed to see Cats I might have been a little buzzed as we did a couple of chugging contests at the bar before going there (not the worst way to see Cats just for the record).
There were some precancer day friends to from Ultimate Frisbee. We'd catch some dancing and brunch and go to America's oldest pizzeria to try some New York style pie. It was good to realize we were still connected so far down the line. One lived there, one lives in Bahamas and just happened to be in town and there we met in NYC, a place I've now visited 8 times, every time with a new experience in what seems to be the center of the Universe.
For a few moments, I almost let myself believe that almost all of those friends came because I'm an athletic guy and I would have met them all somehow through the climbing, the ultimate, the Spartans, the New York Marathon. For a few seconds, I almost believed it because happiness and solid connections come from healthy things like exercise right? But at the end of the day, my heart was too honest to let that hole in my brain let that logic slip and I once again realized and accepted that it's okay for parts of life to come from pain, from gaps. The song quoted about and the blog title is from Believer, a song I jam out too once in a while. It has many great lines like the ones quoted above but it makes it easier to accept that sometimes our beliefs about life, love and God they come from pain.
The question isn't whether or not there is pain... we try to mask it with drugs both legal and illegal and activities. But while I was in New York, the only thing I've done every time is go see Van Gogh's Starry night. I also went and saw a few of his other pieces. Van Gogh also had a damaged mine, so damaged he would end his life by it but along the way he let his pain shout out beauty, in sunflowers, in churches, at night, in corn fields and even in his own version of selfies. I'll never have anywhere near his level of talent at anything but I hope that somewhere in between raising Kiana, and running races, and trying to be helpful in life that I'm expressing pain as hope, making them two sides of the same coin.
Kiana's in 5th grade now and I'm thinking about what junior high and high school would best suit her. Elaine and I keep messing with the house in ways that really there's no point unless you think you're going to be there for a while. The long term thoughts keep getting longer and longer, because maybe, just maybe you start to realize that you're a believer that some of the last things that have entered your life are going to last. I've got about a dozen athletic events between now and my next MRI in early December and I promise to thank life, love and God for them like a true believer.
But that's something I planned and trained for, the chess player in me thinking a few moves in advances trying to keep things in check. How we got here was team work and reacting correctly and that has absolutely showed for the last few weeks. The day after the last time I blogged I raced the 80's 8k and while I had talked a lot of smack to my bromance Chris about beating him, he actually would win the race outright a PR for him and his first overall win (and a faster PR than I have in that distance), something he credited my talking trash to (in an interview, in a podcast cause that's when you want your trash talk exposed when you're on the losing end). He did say it got him to check out the course more but I still had the cooler outfit and I mean that's what really counts in races right :)? Obviously I wish I'd beaten him but as I tried to catch up to him in the last mile I did finish with a 5:30 mile but so did he so I ended up in 3rd place overall. 
There was certainly an individual who put that in perspective. Last few years, a couple of UT professors have invited me multiple times to speak to their students. I used to think of it as flattering but it's probably like when I let Kiana help with the cooking or the librarian at school uses her as a librarian's assistant where you're going yeah I'm helping the overall situation and helping an individual by making my load lighter. But one of the students in there was a young man who was in a wheelchair, Archer. It was a political history class and after I spoke the professor did his lecture and then let students opt out of the end of class where they engaged in political conversations. Archer and the Professor were on opposite ends of the political spectrum and clearly thought the other one was wrong about their views on the role of government (despite that they somehow could think that without thinking the other was evil). Shortly after that, Archer asked to be pushed for the race that the professor and I had encouraged the student to run, 10 miles and we pulled it off in a solid time, the 1st time I'd been behind a stroller in about a year and Archer was a little tougher to take up hills than Kiana. This year Archer asked us to step up for more than a mile in his shoes in an event called, Archer's challenge. People had to do their regular tasks from a workday to a workout in a wheelchair. We put together a group of runners who did a relay, A RELAY!, of a little over 3 miles and it took 4 us more time to do that loop on a trail we all regularly run than it had taken 2 of us to run 10 miles behind Archer the year before. We appreciated Archer spending sometime in the middle talking to us in order to get the job done. It was not a timed event but someone on our team might have noticed we took 3rd place. 
