Wednesday, October 30, 2013

Wake Me Up When It's All Over

I guess showing how screwed up my brain is there are people who have tried to get me to change paths all along. They have, with rare exceptions, been good people with good intentions. Join a more elite running group, why would I do that instead of training with my friends? Focus on just one distance instead of doing all these different races, that sounds great except I like the races and I'm not just focused on one distance; I am about the journey more than the prize (I mean if college is only about the degree please send me 1/4 of whatever you pay in tuition and I'll print out a piece of paper to you). Come to my religion, try this herb or medication, try online dating (to each his own but somehow even with my George Clooney approach, I am not ready to have my love story began with, "How did you meet?" "I logged in and..."). I think those are all great ideas... for someone else but I really do generally like my life. I am am hour away from an interview which will be linked on here in due time but the reason I don't quite get why the media is interested in talking to me is because the things they ask me to talk about are things my six year old knows, put one foot in front of the other and hang out with people you love. That's as good as life gets. Well meaning people have said, hey get an agent or contact big races and let's be clear, I'm never going to do that. Doing basic first grade homework with Kiana is an amazing privilege. Making her breakfast, seeing the way she lights up about ice cream or going to the playground is more important to me than anything else I've experienced. I've done the other stuff. I've seen 4 of the 8 wonders of the world before all this started, I've met some famous people... but while life is an individualistic and lonely adventure, fighting to share specials moments with meaningful people is the meaning of it all to me.

I am not naive and I know that in doing the right things, some people have gotten screwed throughout human history. And some people in doing the wrong things have been richly rewarded by manipulating the system. Perhaps there is karma or heaven or hell to make it all right in the end; I don't know and I don't care. The universe isn't always clean nor fully predictable; I have a cancer that has no known dietary, genetic, lifestyle or environmental predictors (this is not true of all cancers, some cancers have some lifestyle predictors ie if you smoke you are more likely to get lung cancer, some have genetic predictors, if your mom had breast cancer, your odds are much higher etc). However, with all cancers, they also study survival factors. If you take this treatment, your chances are this much better. If you have this gene, your chances are that much better. If you chance this about your diet, if you are this age. It's why I went to Duke, the nationwide survival rate for brain cancer is 12% and at Duke it's 18% (that's 50% better).  On this cancer, I have drawn the short end of the string several times. I'm relatively old for it; if I'd gotten it as a kid, my stats would have been better. The reality that it's in the left temporal lobe period, the fact that it's so central, the fact that it wasn't fully removed, the fact that it's not fully visible through any modern imagery, the fact that a side effect in the wrong place alone  could kill you (a seizure when in the wrong place)... One things we know about health in general is that people who exercise and people who have good connections are healthier period so I'm very blessed on those account. But yesterday, yesterday I got good news. Who knows if this will pan out for me but a study was released in October of this year that people who run or walk long distances have a 40% lower rate of brain cancer death rate, 40% is not a small number ( As my little brother might have incredibly eloquently put it, boy did you pick the right sport. I've said all along that I have made decisions like I play poker (I play Texas hold em, not five card stud or 7 card stud) where each card can change the odds, and the right flop or turn or river can significantly change the odds. It was nice to see this study where it felt like odds were flipping in my favor.

So the races or at least the running will continue. And the loving Kiana will continue even more. We return to the community that was still the only marathon we've done together for their half marathon Pleasure Island Half marathon where I think this will be Kiana's favorite medal yet ( And then we get another privilege of doing a 5 mile run around NYC'S central park. It turns out the founder of the New York Road Runner's club died of brain cancer and they are kind enough to be giving me an award of courage ( The organization is called Join the Voices Against Brain Cancer and they raise money for brain cancer research at various places, including my personal favorite, Duke University. I am excited Kiana gets to see New York and that we get to be part of helping that organization (I need to raise $500 so if you want to be my hero)... but what I am also incredibly excited about is that the guy who beat me at the Duke 5k that ESPN was filming is also coming with his wife and kids and our kids get to meet each other. He is also a brain cancer patient and has joined my team. Unfortunately, he is not currently running so he'll walk it with his kids. The fact that a guy who older than me destroys me running is not in a place to where he can run well these days... is one thousands of reasons to shout against brain cancer, to be a voice against it, but each of those, to me, only matter because of what your voice should be for. Kiana and I use it for singing during races and screaming at the finish line but we also use it to do homework, to pick out that day's outfit, to say I love you. And in all my parenting lessons, I hope that she will learn to stand against many of the world's curses, but I hope that in each one, she's also standing for one of the world's many blessings.

And she's signed up for a Spartan kids race in December. Spartans are the only race she's never gotten to come to and the way it's set up I definitely can't do it with a stroller so we'll do the kids one and then cheer on other people doing it. And my first marathon ever was the Austin marathon and 2014 will be the first year I miss it because Kiana and I are going to do her first 5k together then and afterwards we get to hang out some medals. People have reprimanded me for some missed opportunities and invitations, that I'll regret it if I ever get older and wiser. Maybe they're right but I doubt it.

One of the guys from the ship who I admire more than most people is someone we call Big because he moved to running from the football world. He is a coach and was the person who gave me rides often when this all started. He was the one who gave me a ride to the first run I went to after the biopsy where I felt so off that I literally cried at the end of a 14 mile training run and he said just take it one run at a time. He was the first person who was the Shipmate of the Year in my running group and he would be the one who introduced it the next year when I got it. He tries to pretend he's a tough guy (which he is) but he also sets up the gatorade at every workout, stays till the last person leaves. He finally qualified for Boston (you can read much better writing at but my favorite remark there is that he qualified on the workouts more than the race. When I spoke at the Pocatello marathon, or in the video I said it less eloquently but I really do think the rhythm and rhyme of the song matters much more than the final beat... I hope to get both right but if I only get one.

As Kiana keeps growing up, I know I'll become less important and less necessary to her, quite frankly that's my goal. My parenting philosophy is that first you give your kids roots, and then you give them wings. But the fact that she braided her hair all by herself for the first time two days ago made me semi emotional that it was happening so fast. It also made me grateful that I've learned to pay attention to catching these moments more.

Obviously one of my coping mechanisms is songs and one of the latest favorite is Avicii's Wake Me Up ( The lyrics are brilliant (and it's pretty fun to dance to)

Feeling my way through the darkness
Guided by a beating heart
I can't tell where the journey will end
But I know where to start

They tell me I'm too young to understand
They say I'm caught up in a dream
Well life will pass me by if I don't open up my eyes
Well that's fine by me

So wake me up when it's all over
When I'm wiser and I'm older
All this time I was finding myself
And I didn't know I was lost

So if to catch more of Kiana's life, whether or not the turn gave me increased odds, I have to miss some other cool adult things is life passing me by... well that's fine by me. 

Monday, October 28, 2013

The Beauty of Family

There's an old saying that home is where when you go there, they have to let you in. Since that's true, perhaps the wisest sense of home in my view, it's good to have a home. Because home is where family is... where we belong... where the connection is one we're blessed to be stuck with.  Maybe it's just the logistics of birth and genetics but I really think that the human approach that we're generally stuck with those who are responsible for our being born is a very good thing. (I'm not naive and cancer patients like me have it easy compared to people who grew up in less than adequate homes and families that by far the healthiest thing they can do is get away from them and find literally or symbolically "adopted family" but even the adopted friends I have are among the most intent on making healthy connection).
Even as a couple more invitations have come to speak and/or run different places... I am both grateful and confused for the opportunities that have come from all this.  While I imagine the ride will end soon, I've passed down a couple of cool invitations because though they tried their insurance wouldn't cover a stroller (I also passed up one in Vegas that they'd let me do with a stroller but don't really think that's a fun city for Kiana and come on if I"m going to sin city, I'm going to sin). I had a gym thing I won but all the classes were in the evenings Kiana's with me or at 5:30 in the morning so... that was that. I hope and trust I can continue making sure it doesn't interrupt family time in an already split custody household keeps being my north star (let me keep reemphasizing that since I've been reprimanded for thinking no one should ever get a babysitter, it's that I have a built in babysitter some evenings and every other weekend because I screwed up my marriage). Last Thursday, there was a cancer event I was asked to be at, my running group meets on Thursday and Kiana's school had their fall festival (PC translation Halloween). It took the guy with a damaged brain no thinking time at all to decide which one to go because the only reason the runner and cancer survivor identities matter is for relationships, being a dad being my primary one. And like the other two, I am not anywhere near the best at any identity without conscious direction, time and effort. 

And I want to believe, dare to dream that it matters. Kiana and I went to go do her marathon kids workout where while we were doing quarter mile repeats on a sidewalk near the street,  she stopped in the middle of it to pick a flower to put in my hair. We come home and do homework each night and she got to be on the honor roll for her first 9 weeks ever and she recognized the excellence by wanting an extra treat instead of the one per day. She must have picked up her sweet tooth from me because the simple truth is that almost every month when I go to pick up my monthly anti seizure prescription from Costco, I pick up some ice cream to go with it to help the idea of it all go down. Saturday night we carved some pumpkins...And we had some classmates that came over and helped out with Kiana and she carved three pumpkins, one with me, one for herself and one with her mother. I am lucky to have a great kid... I should call her what she reminded me: "I am not a kid. That's for goats. You can call me a child or a cub since I am a lion."

But see, even as I'm about to come out in a couple more media pieces for putting one foot in front of the other while raising a princess, it was good to be reminded that family provides the best realistic perspective. On the days someone hands me a magazine with an article or a picture of me, Kiana still expects me to make breakfast and still calls me out if I burn the pancakes. On the days, she comes home with straight A's, she still has to straighten out her room. On the days we do our hilliest race for 10 miles in the rain she still expects me to keep up with her at another Halloween party shortly after (though it was kind of amusing that the usual "faster daddy faster" turned into "can you go around the puddles please? I'm getting splashed"; of course I took the direction). Family is the best at reminding you of the blessing and curse of being human. On that 10 mile race, grandma was in town and she hung out with Kiana after we finished and I wanted to get some cool down miles in but I got to run in my family. I wish I could have ran them all in but rather than just do extra miles as I have with many races, I'd go back out and find someone and ask if it was okay to run in with them since those things have always helped me. I did it for several friends, mostly from the Ship that I've trained with since before this started but also with some that I coached (you better believe all the girls I ran in were cute and charming).

Anytime I have gotten to sit in a relaxed presentation... when we get to the Q&A portion of it, I raise my hand and go "what's the meaning of life?" continuing my role as a class clown and usually drawing laughter from the class. Many speakers have said, mostly with smiles, that class is down the hall or something similar but a few have taken shots at it. My answer that the meaning of life is life, and I don't mean just to stay alive since even cancer is trying to just stay alive, but to be living and contributing for something and someone. My fighting against is cancer wouldn't matter if I wasn't fighting for running and for several people, Kiana chief among them. And in the end, I am no more and no less than what and who I spend my time with. No one bats 100% but I am grateful that on the days I think I'm a total badass, family point out something that makes me laugh and remind me that oooh look you put one foot in front of the other really fast but you forgot to take out the trash. And on the days, I'm disappointed with a race or with myself that I have some of those family members who remind me they are still there and I smile. I love this time of year because as things kick in between Halloween (I mean fall festival) and Thanksgiving and the Holidays (I mean Kwanzaa, Christmas, Hannukah or Festivus) there's lots of times that are intentionally just for doing some fun, some relaxed, some cheesy things they remind you to hang out with great people and take in their presence in different ways (plus they all come with delicious fattening food  items!). But while these days are holidays (yes I know it's not holy days), I'm glad I get to regularly and year round keep spending time with friends and family... because nothing is more sacred to me.

Monday, October 21, 2013


I’ve joked that since this year I’d done an obstacle race and become a Spartan, done 26.2 miles and become a marathoner and now I would go out and ride 100 miles and become a Centurion. These were all soldiers of old battles and ancient empires but in the end they fought for life as they best saw fit. So, I for a guy who commutes on a bicycle, I’ve actually only done 3 organized rides all 100 milers for Livestrong.
Centurions were the top of the ancient army and they became that way in many fashions. But this weekend, it was a privilege to be surrounded by Centurions. There is no great way to compare the ancient centurions with any modern army because in the Roman empire, Centurions could gain their position for a feat of valor like being the first over a wall, they could be elected, or appointed. They could also be promoted from the ranks for a variety of reason but most of them were significant acts of valor. And that’s what this weekend was like, a variety of valiant men and women some strong connections, some looser ones but with a common enemy of cancer and it’s side effects and the need/comfort of being part of a community that was focused just as much about living strong right now as they were about avoiding death.Some were there as all but full time volunteers, some as staff, some as enthusiastic cheerleaders. 

I got to attend some Livestrong events and like the honest folks I’ve always known them to be they acknowledged the difficulties of the last year but showed that their strength and resolve is about moving forward. There were men there who cried tears as manly as they came to terms dealing with the fact that even as they celebrated an anniversary of their cancer defeat their wife had just been diagnosed. There was a young man with brain cancer that I had met at the first century that with all that was going on was not attending school this semester because of growth and treatment. His parents were optimistic and hopeful, open about their hurt. At the Livestrong dinner, they were selling shirts that said Jimmy Strong and appropriately enough, he was the one that started the ride on Sunday. I got to be part of the dinner by having been invited to be on the team that had raised the most money. I raised a few hundred dollars for this event since I mostly focus on the running events since that’s my forte but I tried to have some humor about it and like my first century shaved my legs like a true cyclist. Between that and the Hawktober Mohawk, I couldn’t ask to be more aero dynamic. The simple truth is even on my best fundraising day I can’t hang with some of those guys and their connections for fundraising and on Sunday… well I couldn’t hang keeping up with them on the bike. But it was a privilege to be a foot soldiers even if they were the Centurions of that army.
here were nods and tears for those who had passed in the last year, some who had fallen too quick, and others who well outlived their prognosis but still passed away much too young. There was one of the staff who was gearing up to do her first marathon in honor of someone who had passed away from brain cancer much much too young in their early twenties.

The ride itself was about perfect. I rode with some people who it was not more than a bike ride because they wanted a century in every state or one every month that year. I rode with someone who was witty enough on a steep hill to shout out to his friends as he passed me and them standing on his bike as he pedaled up on a hill: “See I still stand for Livestrong.”  I rode and chatted with people honoring their father, their mother, their friend, their child, some their own triumphs. Because I’m not that great of a rider and because it doesn’t take as much lungs as running does, some people who were my speed were doing shorter or longer distance or stopping but I got to chat with more people than usual, thus why I like the cycling events because I meet more people during the event. They have several water and food stops along the way but the weather was cold enough to where I only took one in the 100 miles and did the ride at about 18 miles an hour in just under 5:30 minutes, fastest one yet. Best part was that cancer finishers at the end of events get a special rose and mine was given to me from a lady who is a saint so much so that even her name means that. I'd met her at my first century ride last year and it made the finish that much sweeter.

Two friends who I’ve made along this journey brought a gift for Kiana, someone they’ve never met. And yet seem to take in as their own nice/granddaughter. And that’s the beauty of Livestrong and organizations like it… even as nods and tears were given to those who had passed, those recently diagnosed, we were sharing the frustrations of the side effects of this medication or this insurance problem or the horribleness of a disease that comes so randomly and sometimes so mean and pathetically aggressively. And even for people like me who are getting a break from treatment or who it’s stable or in remission or achieve full removal, there is a nervous worry about that those screwed up cells which have taken time, energy, emotion and worry are just being passive aggressive. But rather than mope with those worries, these centurions, these leaders of the fight against cancer’s current effects besides just the medical ones, they fight. They fight sometimes with money, sometimes with long rides, sometimes with jokes and sometimes with drinks and dancing and we know that even in the midst of those silences or not talking about it, that there is a comfort to standing in the presence of those who get it a little bit more than most people.

 Until/unless science gets better, I will have a cancer that has no known dietary, lifestyle, genetic or environmental components but I am grateful to Livestrong because they’ve given me tools, directions, inspiration to fight back with each of those elements. It was certainly acknowledged that because of a cyclists cancelled wins, it’s been a rough year but they aren’t anywhere near done doing good and being good at it. And I was proud to have ridden 100 miles for and with them because of the hundreds of people they have helped in hundreds of ways.

Tuesday, October 15, 2013

The Gospel Truth

This blog has stated over and over that it is raw and uncensored... that if you're easily offended or anything in here bothers you... to not read it at all. be warned this is definitely just a remembering train of thought entry. I've made many references to my faith or my questioning thereof in this blog. There are people whose unshakable faith provies their comfort, their joys their meanings. For me, it has had many of those but its not something I do without question. Never once have I prayed to beat cancer... because in the end everyone dies and I trust/hope that if there's Anyone in charge of the universe he has more important things to attend to than my death. Nor once have I questioned or been angry with anyone as to "Why me" but I also have never taken well intended guidance to "simply let go and let God" since even the minister I meet with doesn't tell me what that means. No one has ever given me any application of that at least not with the specificity to actions like my doctors have with medical restrictions or my coach has about running guidance. Maybe it's why I listen to them so readily or maybe that's just because I'm using them for my body. But in regards to faith, I always echo Galileo "I do not feel obliged to believe that same God who endowed us with sense, reason, and intellect had intended for us to forgo their use."  Though I paraphrase it to say that I refuse to believe God gave us a brain and then asked us not to use it... but then again, I have a screwed up brain.

But I've been attending church more regularly this year than I had in quite a while. And currently the church I attend is doing the explore God series ( of people's questions and searches for truth. The church I attend the pastor is brilliant and while studies have shown over and over that people with higher iq's are more likely to be atheists, at their best and brightest, this minister could go toe to toe with anyone with the highest IQ. I am not anywhere near what anyone would call strong in their faith or someone who would say everything happens for a reason. Still I also don't have the type of faith that it takes to be an atheist. I mean who would come up against an ipod or a computer and say yep that got there by itself. The human mind alone is complex enough and the universe and gravity etc that I just don't have the faith to say yeah it just randomly got there over time. But on the opposite hand, I got in trouble with some Christian friends for sharing the comic copied here in. And while I got called out on it all I can say is trust in God but lock your car. But one of the issues the minister addressed there was an interesting difference in faith approaches within the Christian realm. Protestantism, the type of church I attend takes the canon as the highest truth. Catholicism places tradition on top and Greek Orthodox takes the individual experience as the highest. I have no great answer which one should reign and the fact that gigantic portions of the world choose the different options may say just as much about humanity as it does about faith...

I've tried to balance these three approaches to truth over the last year as best I can in regards to my life and cancer. I went to Duke because they have higher statistical survival than anywhere else but they also have a mediation room/chapel and counselors and navigators and will connect you with other survivors. I have raised money for what feels like each of those aspects with the cancer research and livestrong and imerman angels and wonders and worries etc. Tonight I attended a brain power hour, a meal support group for brain cancer survivors. I have attended several of these over the last year but tonight was the best attended one I can remember (but then again I have a bad memory... perhaps best reflected by what one of the George Clooney girls said to me as she hung out with me more... I wonder how much you remember of our relationship and I responded with I wonder that too).

Coincidentally everyone there was or had been on the same medication I'm on at some point, Keppra. They spoke of the different side effects, for some it was the nausea and vomiting (they pay more attention to the pattern than I have... I only seem to notice during races), some complained about their high dosage (none ever got to the level I take because the way I push the body makes it metabolize fast), some talked about how it gave them flat affect (I've never noticed that the way I did with dilantin where it felt like I was doing my personality from habit not from feeling it), for some it gave them depression, some how it made them more tired (I'm pretty high energy and have never noticed it during the day but I sleep more than I ever used to with serious conviction). One talked about how they've never really shared it with many people, another was frustrated that his sister had shared that he had cancer on facebook and he wasn't happy about that because he didn't want people to know. I can certainly relate to that as I once took a long time away from this blog and after winning the brainpower 5k and going to get my first mohawk I decided I was going to accept being known by the scars ( They talked about the different kinds of seizures they have, grand mal, blacking out, petite, etc. I have had grand mal and partial seizures, the latest one unfortunately being actually later in the day of the last blog entry (10/10). It was just my leg moving as it has before for a few hours and other epileptic patients have been like "oh my doctor would probably give you clearance to drive." Others have asked, they let you do all this athletic events and bike around but they won't let you drive. Well, part of that is Texas law which is meant to protect you and not me; the other part of is that I'm okay with it because I trust them and if they don't have confidence that the girl in the backseat is safe, I will follow their guidance. Others threw out stats about how they despite that they were given at best a 5 year survival rates, someone they'd met who had the same kind of cancer who was now in their 13th post diagnosis year wanting to believe, some fully doing so, that they would also be part of the minority. As with everything else, it seems they all wanted to believe that their attitude alone would be enough. Let me make this clear, while I have full respect and admiration for anyone who thinks that but I don't share that belief that attitude is the only thing. I really do bet on odds even as a race director recently, a single mom at school, and another cancer survivor were shocked to find out last week that unlike in most split custody households, that I had primary custody. While I wish Kiana had both her parents around most days... well if that's not true I am grateful to be the one who does. I get questioned on this by a friend with a Ph.D in math says "who wins marathons pushing a stroller with brain cancer? some of the things that happen to you don't happen to anyone so why do you think that your brain cancer will take a normal course." If I want to share in that attitude approach, I hope cancer realizes it picked the wrong guy to have a fight with because while I've never started a fight, I've finished a few.

Someone recently put up picture on facebook to say that it's never to late to be what you might have been. Even as I try to acknowledge attitude but not allow it to be the end all be all no more than one approach to faith, I like the hopeless romanticism in that. The guy committed to being single's longest playlist is "hopeless romantic" but to me the thought that it's never too late to be what you might have been is just neither simply true nor false. My degree is in psychology and mentally "normal" people want to believe that depression and schizophrenia or bipolar disorder is just a choice. To me that's as naive as to say you can be just as fast as me by trying really hard. The brain, as confusing as it is, is part of the body as much as the muscles are and each of us has a natural range that we can push and stretch. This may be illustrated by the fact that the Greek guy who ran the first marathon died. Now thousands of people do it  including a brain tumor survivor and some good friends at the Chicago marathon this weekend. And one of the brain tumor survivors at tonight's meal struggled with a seizure while he was playing softball. He had a 90 second seizure and then went back and finished the game. One of the people out there was a doctor and was shocked that with cancer they let him play. I am glad neither his nor my doctors come from the traditional doctor approach of let's ask cancer patients to sit on their ass.  Last Thursday when I had mine, I went out and came in first in a 5k... the leg was sore but... And speaking of sharing the value of experience we both acknowledged how great it was to have a group like that because well none of our doctors have taken the medications we've been through, had the seizures etc...

They shared their treatment stories about how this genetic radiation was $5000 a pop or this MRI at this place vs that place was $200 deductible vs $2000 out of pocket. They talked about how insurance wouldn't cover this treatment or how they asked for some treatments like neuropsychologicals that were denied by insurance. Perhaps showing how screwed up my brain is, it didn't appear anyone had a breaking point where the bill wasn't worth more than "reasonable." I am uninsured and with the way this government shutdown continues who knows what will come of that whole universal healthcare thing but there will come a day where between dying and leaving my daughter broke, it's an easy decision. To quote a musical, "I will not be the reason that my family can't succeed. I will do what it takes, they'll have everything they need."

Some were very urgent to get back to work, one to more gym workouts, one to retirement. One survivor was sure that her brain surgery had cost her no cognitive or physical skills (she was the only one) and I wondered if that was true or if like some of my denials it just took longer to sink in or to listen well enough for other people to point it out. They talked about some new treatments and specific genetic target. They they are far more excited about than is very realistic to me since we're a long way from understanding the brain. But perhaps as Mariah Carey once sang, "if there's one spark of hope left in my grasp, I'm holding with both hands. There is this burning to have a second chance." I am glad I have been given a second chance. And that just means I appreciate life like I always should have cheering on louder and high fiving everyone I could at that 5k time trial. It means I was thoroughly happy to watch two friends get married and realize that if life is a game... well love is the prize. And I'd take it for new experiences like yesterday taking a ride in a real roller coaster for the first time at age 33 with Kiana at age 6 and her sneaking around like scooby doo while I try to run from the ghosts in my head (I loved Scooby Doo as a kid because superstitions were explained through intelligence).  Hell I'd take it if all it meant was watching a little girl put on a sunflower hat and point out flowers.

Working from our traditions, our experience, the canon of data we call science. Which one of those reigns supreme can and has been argued. While none have full authority over the other, at least not in regards to my approach to brain cancer, data is definitely the highest in the pecking order. There are those in science, faith or any approach that would say that you should only take one instead of having a pecking order.  Perhaps but that's my current approach and balancing all of those with a pecking order is all I've managed to do so far and I'm a long way from shifting. I imagine I'll get in trouble for the title of this but gospel while it has come to mean talking about Jesus literally just means "good news." But for me, I am grateful that in the midst of the oddness of brain cancer there is the canon of science, the experiences of both mind and others and traditions like the brainpower 5k arranging groups like tonight. And to me, tonight, well that's very true good news.

Thursday, October 10, 2013

Filming the Wrong Guy

When they were filming the race at Duke, while I came in second, it was my fastest and the one I'd raised the most money for Brain Cancer research for, there was a spectator who realized that the camera was following me instead of the guy in the lead. He shouted at the camera guys "You're filming the wrong guy." It was part of several filming but if their intent had been only about the guy who wins the race then they were absolutely filming the wrong guy. If that's the only goal of any of the athletic events that have invited me... it's always the wrong focus. The guy who beat me at Duke was a stranger at the time. But since then he is a friend, also a brain cancer patient with plenty of spunk and speed and good skills at parenting. He's had to slow down some and get driving restrictions due to his treatment but I have full hope that any race we do together, his back side will be the best view I get of him.

But while that filming hasn't aired, today  my favorite video yet came out (if you want to skip this blog and watch that instead, you have my full permission). It's not my favorite because of what I say (honestly on that end I sound a little preachy to me but you can decide that for yourself) but because this is the one that the camera chose to skip the trophies and the races and just talk about the day to running with my daughter Kiana. This if course not complete because there are and always will be races and I have always been a competitive guy and likely always will be. But the biggest win of my life will not be a race against other runners, against the clock, against cancer, it will be that I won the perspective that for me, catching and sharing life is more meaningful than all of those combined. (And while I'm sounding preachy, let me make clear, I'm not saying everyone should go have kids and spend all their time on them. Because of not having appropriately taken care of my marriage, I have a built in free time on every other weekend and evening visitations. Good healthy relationships usually have some time where it's one on one. All I am trying to say is I don't know anyone who is happy and healthy without significant healthy relationships in their life).

I appreciate the kindness about the running and the compliments but I focus on that because one leg in front of the other still works fully. I work on the mental skills as much but those are far more frustrating and while I've made some ridiculously small steps towards opening up my heart to being less George Clooney like (or more George Clooney like? one friend pointed out that George Clooney at least has actual girlfriends), running gets praise because it's an outlet, a hobby. It is the means that gets me through the day to day. I have full respect and admiration for those who give time, discipline, and effort, hours to shave off some minutes and seconds off PR's. I am one of them but it's to share and hope for more time above ground with Kiana not just to take time off race.  Sometimes it's doing things she likes to do with her, sometimes it's just watching her at the playground, sometimes it's letting her share in some of my activities like running or teaching her to do it (she recently started marathon kids and on her first track workout did 2 miles of running. There were water breaks and pauses but no walking. I was impressed. We went opposite directions on the track, high fiving every time). And the honest truth is that it's not even at the cost of friends either; I think the reason it's gone well is because of friends. One of the magazines that is featuring me said out of all the runners they've ever profiled she thought she'd never met one for whom running was less about "me-time" than me. I stopped running after college cause I was no longer part of the cross country team (that's the jersey in the video) and I didn't start running again until I found this great running group I'm part of, the Ship of Fools who while we train together, we also have breakfast, and happy hours and heckle each other. And no one cheers louder or claps harder than we do on weekends like this last one where tons of friends got PR's in 5k's, 10k's, finished marathons, qualified for Boston for the first time, broke a 2:40 marathon, broke a 3:00 hour one. Because our group successes are individual ones and our individual ones are group successes. Synergy in running, in relationships is inspiring to me. I know some introverted runners that have gotten better by running more alone or more where less people are on the track but... I'd rather hang out with this crowd of friends because those are far better times than just to get my best time in a race. And it turns out, at least for me and lots of people at Tuesday's work out, that the two are completely mutually inclusive.

Most people contribute in some way or another in their job. I do miss my job so these days my "job" is to volunteer perhaps for no other reason than seeking meaning during the day while Kiana is in school. So I give my time in the day not to training harder on my own but to volunteering in things like the math tutoring that just restarted for this school school yesterday. These junior high kids struggled reading clocks more than fractions. They had to turn their cell phones off while Miley Cyrus played in the background on Pandora. They loved the Mohawk. Some things change, some stay the same. And speaking of the Mohawk, I am not nearly as good at braiding as the people who give the Hawktober mohawks ( so I took Kiana to get her braided feaux hawk. I accepted that I couldn't top last year's Livestrong color mohawk so I passed it on to the next generation. And like everything else she one upped me.

And if you check my facebook profile pics... or banner pages... the ways we choose to self identify and self portray, people have tried to get me to make it race wins or jumping over fire in spartan races. Those things are awesome but right now they are of me dancing at the Spartan Charity Win knowing I'd shared some of my good fortune with others and of me hugging Kiana, knowing that fathering that little girl is by far the best thing in my life. It isn't that I don't understand how impressive race wins and jumping through fire are greatand I have full respect and occasional jealousy for people who do those things better than me; that's just not my primary focus or self identification. There are people who can do that and do great at both. I didn't turn out so good at that balance so I've tried to prioritize correctly.  And my main goal is just to pass things better to my daughter than I had them in every way can, in every way I know how. Because if everything goes right and that's what I tried to accomplish or if everything goes wrong and that's what I died trying to accomplish, there is no bigger win/win that I could possibly imagine. And if I do that all right and have to find a new identity if I am still standing when she realizes I'm a dork, and says go away dad, I will never cry happier tears and will find another day to day identity.

 I know that there are some people that the wins are their main story. It's not mine, mine is simply parenting while exercising. It's relatively easy as a parent of young kid to exercise because just attending the school picnic last friday I got a workout by trying to keep up watching Kiana. I'd be in better shape than most people who don't have children whether or not I worked out just by trying to keep track of her. I've passed up races that wouldn't let me do it with a stroller on weekends she's with me. And even though she's gotten heavier we just signed up for a 10 mile run in Austin that is by far the hilliest run we've done because we aren't done yet. And while I'll never stop exercising if there ever comes a day where running in a stroller is no longer fun for Kiana, that's the day I retire from those races with apologies to no one. And if all I get to do for exercise is walk her to school or run up and down the sidelines of her events, sign me up, every time.

Lance Armstrong's initiation of Livestrong just passed by a few days ago, more quietly than last year and some people "virtually" acknowledged it while others did their shouting at him. I recently watched a video where he said he likes winning but he hates losing because losing is death or worse than death. I am a competitive guy and so is he but I don't even take things like protein powders trying to do off just basic foods because I'm not trying to compete on an international level or even serious race level. I just want to see what I can do naturally (if you watched the video, my most common breakfast is smoothies so it was cool that made the cut). Plus if you start taking substances where the right line is has been debated... and for Armstrong well we know how that story is playing out with him. But with that said, I still say thank you to him for starting Livestrong and I am still raising money for them because like each of us is somehow both connected and separate from our parents, Livestrong has made great choices both because and despite of the ones their founder made. For me, to quote a wise man, "Every life is a pile of good things and bad things. The good things don't always soften the bad things, but vice-versa, the bad things don't necessarily spoil the good things and make them unimportant." So I still support Livestrong despite some Lance Armstrong's less than admirable choices. If you want to make a donation to my 100 mile ride And if you notice the video the band is still on my wrist and those bands for people to wear are still at my house.

Still I am going to a 5k time trial tonight and I'll be trying to be the fastest one in the group. And I've got the 100 mile century bike ride in two weeks and I'll be trying to do it faster than last year. And I've got a 10 mile hilly run the weekend after that. I'll give those all I got like I have with the treatment and academics trying to beat both me and other. And while all of those things have been filmed... if they think that's my main or only focus, then they are filming the wrong guy. Because for me, my favorite part of life has been when i'm behind my iphone camera catching and sharing a little bit of Kiana's life.  But between those athletic events, I will make Kiana some pancakes (this weekend she'll share it with several of those running buddies as we have a pancake off... and if you think i'm not competitive, you're invited to come try Kiana's favorite breakfast and even there i'm trying to win). But in quiet days, I'll also hug her before going to bed and run with her to or from school. And even when no one is filming, that's the right guy.

Monday, October 7, 2013

Forget and Smile

A fortunate and unfortunate result of being involved in the cancer community of any sort, brain cancer or otherwise, is a far less than subtle reminder of the disease in your head and out of your hands. I think about it everyday on my own as it is. But these are external remidners. Even the song they caught me singing on you tube during the Gusher Marathons was echoing Bon Jovi,  "My life is like an open highway, like Frankie said, I did it my way. I just want to live while I'm alive." And while I sing, run and march to the beat of my own drummer, if you stay in this community you are privileged and forced to see how other people handle it.

So I reflect and think about the girl whose team came in second at the Spartan race (, she has become an advocate for prostate cancer because she says she will talk about it since apparently not enough men will. She doesn't attend regular school (attends some impressive online classes) and she is an incredible athlete and advocate. Her and her mother are clearly passionate, happy and healthy and good for this cause. I can't say what they do didn't mess with me some. I know my life is strange between the medical appointments, the athletic events and the media things but I've done, or tried to, keep my life as normal as I can for Kiana. I am trying to catch as much of her childhood as I can and hoping to let it be as normal as possible under these circumstances. I say this a couple of entries after I write that that the Spartan win got money donated for Wonders and Worries, a program that gave her counseling about it.

Someone made a donation to Livestrong recently for the 100 mile ride I'm preparing for. People who understand humor is a coping mechanism of mine have made donations in honor of the Scarecrow, George Clooney or praising commitment to non commitment. These references are of course easier to smile at and I'm a lot more comfortable with those jokes than I've ever been with someone calling me an inspiration. But the person who made the most recent donation was someone who I had met a few months before their mother got brain cancer and they have now passed and the remark they made... well even I couldn't make a joke about: "We met a couple of months after one of the darkest periods in my life, when my mom was diagnosed with brain cancer. When I learned of the odds of survival, I was devastated. Meeting you was no accident or mistake. Seeing how much you love life and your daughter helped me through my dark time. You are the epitome of the word survivor, and you are my biggest inspiration and greatest hero!"

The day after the donation I went to the 4th  birthday party of a little boy whose dad passed of brain cancer. They had formed a team for the brainpower 5k and the banner was still up at their house (not a huge deal since it's been less than a month) but his ashes were still there in the living room, a clear note as to acknowledge, remember, deal with his presence and passing. And for me I hadsympathy, empathy, fear in that presence. It was a party that me, the guy who doesn't know when to shut up... well I didn't say much during the entire party. 

I went to Hawktober again for the third time and got the Mohawk one more time... This haircut is still not my style but I'll always ready to be a good sport for the advocacy of it all. Someone who was there was present because of a close family relative passing away of brain cancer rather unexpectedly. And the next media piece that I'm coming out in we got to have a preview of last week. (It'll be out in a couple of weeks but if you're really brave email me and I'll give you a sneak peek). There are three of us young survivors in it and another one with a brain tumor also made a significant point about how art, her therapy, is what she wants to be remembered by. She makes some great art but that was the remark that struck me so poignantly... that that is how she'll live on. 

When I won the Gusher marathon between the screaming and throwing up, I said to the reporter what I've said in this blog over and over. That I am just hoping that some of the things I do with Kiana, if this is what kills me and eats away at my memories, that these good things I'm doing are the last things I'll remember and ones that I hope Kiana never forgets ( He ended the article  with the song I finished quoting, Fun.'s Carry On, "My head is on fire but legs are fine." The director of the marathon got me tickets to Fun for the concert they had last night. I've focused on those lyrics and the others from that song that state "May the past be the sound of my feet upon the ground." One friend said I should just assume that I am going to cheat death and focus on the lyrics from that same song "I'd like to think I can cheat it all, to make up for the times I've been cheated on" Amie James from the marathon said maybe I should focus on other lyrics found immediately after that "And it's nice to know when I was left for dead I was found and now I don't roam these streets. I am not the ghost you want of me." Let's just say that's one hell of a good song and listening to Fun in concert... well they lived up to their name and I was grateful to take the girl with me who was kind enough to talk me into asking the Gusher marathon if they would let me in with a stroller. 

The guy with memory problems is working hard at making some memories with his daughter but the simple truth is that when people ask how I want to be remembered... I don't know that I have a great answer. Kiana is as independent as six years olds come and I think we all know that under my circumstances her mother would never let her become much of an advocate for brain cancer if I pass anytime soon but I hope that her causes are her own. I've been out trying to perspire not inspire and accept the first far more than the second. When people ask if I want to remembered, I'm not sure I do. In fact there's been many times I've read Christian Rosetti's Remember. While I hope to be cremated and flushed down the toilet... if they do a service before flushing, this is the only thing I want read :).

Remember me when I am gone away,
         Gone far away into the silent land;
         When you can no more hold me by the hand,
Nor I half turn to go yet turning stay.
Remember me when no more day by day
         You tell me of our future that you plann'd:
         Only remember me; you understand
It will be late to counsel then or pray.
Yet if you should forget me for a while
         And afterwards remember, do not grieve:
         For if the darkness and corruption leave
         A vestige of the thoughts that once I had,
Better by far you should forget and smile
         Than that you should remember and be sad.

There isn't a day I've forgotten I have brain cancer. There are rare days that I don't smile. But in regards to others that poem really says it all. I'd much rather Kiana, my mother, anyone, everyone, forget and smile than remember and be sad.  I said this to a friend who got a mohawk with me and as we sat and had some fries to carb up for a practice ride, he was kind enough to say that just keep being honest and do the right thing and I bet most people will do what you seem to be doing with your memories, remembering and smiling. 

Tuesday, October 1, 2013

Worse Than the Disease

Yesterday was a day of a great amount of mixed emotions and many thoughts (be warned this entry will reflect as it meanders through that). I wish it had been only happy because it was the first month without any cancer related stuff and it finally happened. But it was also a day where congress and the President seemed to be fighting about universal health care. I’ve shared what I think about that here before ( and whatever else you think of the law, the one aspect that I like above all is that it lets you take out insurance with a pre existing condition (in Texas you have to be cancer free for 5 years, something that I’ll likely not achieve). Oddly enough, that fight was enough to shut the federal government down for the first time in 17 years.

Continuing that odd trend, it was the day Seton and I finally arrived at a conclusion about my medical bills which concluded in that this uninsured guy will have more standard pricing in future regular visits. And somehow a realization that they had overbilled me by $35 and will likely hold that for my  next visit. They asked if that was okay with me and I responded that I’d rather have it back since I prefer money in my pocket rather than theirs. However, it was my second month in the black in forever, even if that was less than $20 but progress is progress. I mean it rained last week and Kiana went and danced in it. 

It was a day where I biked 55 miles, the longest I’ve biked in almost a year preparing for the Livestrong challenge. I did a ride called the dam loop and at the end of it, I was sure that they had missed an n at the end of the first word with how that ride felt. People still give me a hard time about Spartan, marathon, 5k Spartan, 100 mile bike ride trying to remind me that if I would just focus on one, I’d do better at it. Let me state this, they are right. There’s an old phrase that if you aim for nothing you’ll hit it every time. I am aiming for better times in each of those events but I am not aiming at it for so long that I don’t get to do the others. But what I am aiming for did occur this month which was less cancer related deals, months where those appointments are the exception, not the rule. I hope this is a pattern that continues.

It was a day where Kiana tried the maple syrup I brought back for Vermont for the first time. She never puts anything on her pancakes or waffles so her deciding to do so was somehow exciting that she was venturing into new adventures of her own. And still she painted my toe nails a hideous green and picked flowers and put them in my hair. It was a day where she as she does often and yet each time it seems like a little miracle, she stopped and picked flower. While I’ve gotten her to sign a contract that she won’t have a boyfriend till she’s 20, I gotta wonder if she ever gets married if she won’t choose to be her own flower girl.

Somehow it was also a day became emotionally disturbingly clear during this month that while I am a guy who used to have his life planned 10 years in advance, I really don’t put anything on the calendar anymore besides school functions, medical appointments and sporting events. I was once the guy who’d reserve international flights the day after they opened up and who bought his house near a good school before his daughter was born.  Even the idea that the Gusher marathon being kind enough to start a scholarship fund for Kiana in light of my win was thinking ahead. Well, that wasn’t my idea. The honest truth is that they offered to help out with some current bills, medical or otherwise and I blew them off but when they offered that scholarship fund who says, no don’t help my kid out with a college scholarship? Perhaps, my day to day approach is reflected in that I signed up for the gusher marathon 9 days before it happened and had never heard of it 3 weeks before I won it.

Yesterday was also a day where I couldn’t find my anti seizure medications for quite a while. I spent hours looking for them and I’m still clueless as to how I misplaced them. I found them eventually but that created some serious anger and anxiety about when I miss things that should be so obvious and are so important.

So on a day that I hoped to just have a happy day (and overall it was) I was following news about Universal Health Care, settling things with a hospital and desperately searching for medication. Yet each of these things, even when I let them get me to my emotional worst where you just have to go outside and sit and breathe, make me at least want to try to focus on the bigger picture of raising a kid. I got to fulfill a lifelong dream last Friday, the simplicity of getting to watch Don Quixote. It was the first musical I’d wanted to see since I was a kid, mostly because it was referred to an episode of Quantum Leap. I also read it in college and understand why it’s often referred to as the greatest book in all of Spanish literature.  I referred to it here before since I thought about Don Quixote  when I kept running after the second time I woke up in an ambulance ( I’d never gotten to see the musical and really had no concept of what was coming other than the songs. It dealt into the writer’s criticism of many things and how a dreamer like Quixote was more than a little crazy. Some of the people who I think really did love him harmed him trying to get him to be more normal even as they sang I’m only thinking of him. They manage to cure him in the end but in the middle a priest wonders whether the cure would be worse than the disease. That phrase has haunted me since Friday. I would not be this good of a runner or this good of a father or this appreciative of friends and family without cancer ( I also somehow wouldn’t be this committed to George Clooney and so closed to the idea that I could find Dulcinea). I would not stress out over pills but neither would I be this focused on the living. For Quixote, the cure was worse than the disease because it was in his illusions that he found and gave hope. The cure left him a broken bitter man, perhaps reflecting his creator Cervantes. I’ve tried to be realistic and optimistic in all this, sometimes with massive failures and fears, others with hopeful ventures. But today, on the first day following the month that didn’t have any cancer appointments or obligations, I don’t know that I’m going to dream impossible dreams I want to keep dreaming more and more. If this does become the norm, I want the cure, or at least as close to it as I get, to always keep the focus that this disease has given. Missing that would be far far worse than dying young. 

Even the knight errant who sang “the wild winds of fortune will carry me onward oh whither so ever they blow” still chased castles and knighthood and didn’t just follow the wind. Between the Spartans and the marathons, maybe I should go to Greece or maybe I should go to Spain and chase Don Quixote or maybe get to that Brazil location I never got to because the trip got hijacked by the hitchhiker in my brain… But I got to watch him sing the impossible dream even thought it took me over half my life to do so. Today I am going to the German Town of Fredicksburg outside of Austin for the first time even though I’ve meant to for years.. I’m not quite as crazy as Don Quixote was at his best nor quite as broken as he was when he was healed… Perhaps it was sung best in his musical

A man can do quite anything, 
Outfly the bird upon the wing, 
Hold moonlight in his hand. 

Yet if you build your life on dreams 
It's prudent to recall, 
A man with moonlight in his hand 
Has nothing there at all.

 And yet how lovely life would seem 
If ev'ry man could weave a dream 
To keep him from despair. 

So I’ll keep dreaming. And even if these are just little dreams like having no appointments last month, Kiana trying maple syrup, watching Man of La Mancha at a local playhouse and Fredicksburg are all branching out to tilt at windmills and hold on to some of my crazy and sane simultaneously which is better than the disease.