Saturday, October 7, 2017

My life, my love, my God, they came from pain

'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. 

Thursday, September 21, 2017

Middle Child

I am the second of three young men and while I have one, it takes no degree in psychology to diagnose some issues about middle children. I was never jealous of my older brother so of course I didn't super focus on soccer just because he was very good at it. I was never jealous of my little brother getting more attention when I was just a few years old nor do I care now that he's a better cook than me. I don't even remember that they took turns attending my graduations even though I attended both of theirs... but I digress ;). I may be showing why the strengths I have that are different than the ones I have are ones I'm super competitive in even if I'm the shortest of the three, the least handsome.

Seriously speaking though, in an age where we seem to struggle with self value and come up with ways to cope by labeling everyone as losers or winners or having a lot of participation trophies... my diagnosis is that most days, most times, almost all of us lie somewhere in the middle and well childhood prepared me well for that. While I've certainly heard some people who struggled with it, I don't really remember a moment where I felt a lack of my mom's attention or affection due to my birth order so somewhere in the middle wasn't so bad.

In fact, even as I get invited still for different cancer events or races or speaking engagements, I know that I get invited because I've won and placed in races. But with rare exception and probably still, I finish with the story of my mother finishing last in her first half marathon. Of course I always mention Kiana and how somehow this kid has never not PR'ed but perhaps... perhaps I'll find a way with the invitations coming up to to highlight that well just by the nature of it, while she's having personal victories and of course age group victories, she's usually somewhere in the middle and in my book there's nothing wrong with that as long as you're pushing.

Speaking of meeting in the middle and pushing, some races have gone very well recently. The BrainPower 5k, the race that was announced on my first birthday after brain surgery, the one where it was my first win since college, the one where I was the top fundraiser, all of which combined to make me realize it wasn't time to hang up the running shoes just yet was less than two weeks. Like a recipe that keeps improving or that small decoration or remodel that makes the house feel so much better, this race has continue to add in its special memories to me. It was my mom's first race one year, it was Kiana's first 10k. It's been one where I had the biggest team, the fastest team. It's one where I've met some great brain tumor survivors even as the frustration grows in seeing more 'in honor of' and 'in memory of' signs. But stressors and damage comes in life and that part of the story may be inevitable but we get to write how we react to it.

I won it in it's 1st year and thought that was an eye opener but it was just a blink in the end. But 3 years later in it's 4th iteration, I would win it again but when the awards ceremony came I wasn't around. Because there finishing last with some help from a nurse navigator and a member of my team was my friend Minerva, who diagnosed only a few months later and having sat through rehab was slowly moving forward and I was at the finish line cheering her on. I missed the awards ceremony that year but I saw something much more important. She's had 5 brain surgeries since being diagnosed, has had too sit through way too much rehab. I've visited her at her hospital, at her home and she reached out asking if I could push her in her wheelchair. We upped it one and there was an Ainsley's angel who had signed up to push someone in an adult stroller but thought they were just in shape for the 5k and I certainly didn't want to nudge them. It kind of was a good compromise cause I was planning on running with Kiana for her 5k. Minerva wanted to do the 10k because she had never gone the long distance the race offers and I said I'd push her for the 2nd half with it being a double loop. Kiana's race went very well. She now has her own GPS watch (my previous that looks gigantic on her but she loves it) and I did not pace her, just told her what pace to go. She got her fasted 5k by a little over 30 seconds for an exact 23:00.

I usually struggle with her growing up but this was one of those days I needed her to and we had talked before the race about what she needed to do afterwards while I went and did my second loop. I didn't include dancing in those instructions but somehow she managed to pull that in. But the second loop was magical. It was the fastest Minerva has ever moved on non motorized vehicles. The first loop well let's just say they were more polite than this guy because they would say excuse me and walk around or wait when there were large groups of people (probably the proper etiquette). On my loop, it was me shouting on your left, zig zagging, getting on the other side to move as fast as possible. I am not really in stroller shape these days and it would turn out I'd be sore the next day but Minerva said it was a lot of fun to move this way. Kiana won her age group, Minerva won her age group and even with me pacing these two lovely ladies, I took 3rd in my age group. But while Minerva credits me with her signing up for her first one and I think it an absolute wonderful memory to see her spirit take her to be the last finisher, meeting literally in the middle of this one, the story didn't end just that cleanly. Minerva I think thought that since she is not as mobile these days that I'd be pushing her across the finish line but that's not the way I view her capacity or the university so when we were to that last straight away that I once cheered her on, she got out of that stroller and slowly but surely, she got herself all the way across that final section of the course. There wasn't a moment I wasn't beside her in case something went wrong because us brain tumor survivors you better believe we've got each other's back. A local paper covered it in case you missed it but like pretty much everything ever written in this blog, it was far better experienced in person.

Only a few days later, I'd be headed to Philadelphia to run with Voices Against Brain Cancer in the Philadelphia half marathon. The guy who usually recruits us, Kevin Ogborn got motivated to run his own first half marathon as part of it. There were 3 of us out there who managed to raise almost $3000 for the cause (not to late to donate). It was a gorgeous and fun course and like with Minerva I was there cheering Kevin's finish at his longest distance yet. I was inspired by a guy literally stepping into new adventures for the cause.

 In both of those races because of my pace or pacing, I was somewhere in the middle but afterwards, Kevin was received by his wife and two daughters. Minerva would go home to a happy mother. In both Philadelphia and Austin, I'd have my girlfriend Elaine (who by the way placed 2nd in the brain power 5k and 4th in the Philadelphia 5k). Kiana and I were there for each other. I was part of and had a team in place for individual events everywhere. At the Brainpower 5k, my team might have taken plenty of the top spots overall and in age groups. Many of those people have been part of several of those races but I appreciate them all.

I mean there are people on my team who I've trusted with my daughter, with my dog, with my house, with financial things, with emotional things. I've passed by them in the middle of races and streets.
I've got a friend who jokes that he's really good at 2/3 of the relationships, the meeting them and getting a date and the breaking up part (ie there's no drama). I heckle him that that's like being good at the kick off and the closing play. Generally speaking it's the rest of the game that matters. The people who are there during big victories or big losses are memorable because those moments are easier to grasp in retrospect. But perhaps as I'm getting older or just plain getting old, I am more aware that it's the people who put up with you when you smell on the way home from an average slow long run or do those with you, the people who help you clean up after the party, the people who join you for the shopping or the picking up dog poop, the people who help you put away the dishes, those are the ones that matter the most, the ones that join you for the middle of the road stuff in life. It's too easy to overlook them sometimes but these are the relationships I most want to work on, these are the relationships I most want to keep.

Every once in a while when I share these stories on social media or in person, it has been suggested that I write a book. I always shrug it off because it takes a cursory reading of this blog to see how bad my writing is. Still someone recently suggested it on my facebook post that they'll pre order my book and I commented "Once upon a time, there was this guy who put one foot in front of the other. The end." Someone wrote a great follow up comment which was, you're nowhere the end. That comment, that moment, from childhood till today, I am thankful to realize that for me right now, the middle is a good place.

Tuesday, August 22, 2017

But Every Now and Then I Fall Apart

We can take it to the end of the line 
     Your love is like a shadow on me all of the time 
I don't know what to do and I'm always in the dark
     We're living in a powder keg and giving off sparks
I really need you tonight
     Forever's gonna start tonight

Yesterday was one of those spectacular events, a total eclipse... if you were in the right place at the right time with the right weather. Otherwise, it was another day/night and even in places, like here in Austin, it wouldn't be hard to miss since its peak was about a minute at 65% at 1:10. I got out there, set up my iphone to take a picture of it and it was pretty cool (hot actually since its Texas August). Its not like I was nerdy enough to watch other views and reactions to it on TV and social media and the internet before and after my own personal experience. (Also, in case anyone asks, there's no way I started an astronomy club when I was in middle school or decorated my daughter's room with glow in the dark star constellations or named her after the Hawaiian moon goddess, oh wait...).

But I sat out there on Kiana's first day of school with a little extra time to spare and reflect which is where most of this train of thought today is coming from. I'm almost at 7 years of cancer, the median for people with my type of brain tumor. Is that almost a passing grade for a kid who who liked straight A's? But the grade that was messing with me the most was that morning I had dropped Kiana off for 5th grade, the last year of my dear's elementary. Hadn't it only been 5 minutes since Kindergarten started and I was the one making pancakes, plain old ones, not the blueberry and chocolate chip ones that she had made into smiley faces that morning? Everyone else was thinking about the don't look at the sun without proper eyewear during an eclipse (by the way isn't that just good advice on say any day?) but the advice I keep giving myself as Kiana grows up also has to do with my eyes but it's even more basic, just don't blink.

We had just returned from a trip to Alaska Friday. Without exception we took a hike and adventure into nature everyday. There were boat, helicopter, train, bicycle, off road vehicle tooks you could purchase but if you're in the last frontier, it just felt right to do it on our feet (though to get to the different adventures it probably was the most I've driven in one week). It will go down probably as the one week of my life that without any injuries or impediments, I was walking more than I was running. We climbed up Glacier Exit for a 9 mile round trip where Kiana was shouting and singing snow and threw a snowball at me. We climbed Mt. Marathon, a hill so steep that when they do a 5k on it people like me who do a 5k at almost a 1/4 that speed can't break an hour on it. I kept insisting to Kiana that she had now done her first marathon, a premise she rejected since it wasn't 26.2 miles. We finally compromised and said her first marathon was a mountain climb. Elaine had put together the entire trip and we realized that this 10 year old had enough energy to where there were times we were struggling on keeping up with her on some of the hikes. On one of them she literally would run to a section and come back to our walking speed, run out again. We ate a variety of local foods from salmon to reindeer to picking wild blueberries (sorry mom we ate them right off the vine without washing them, neither they nor the salmon, gave us salmonella).

Due to the nature of often needing your hands on some of the climbing, that a lot of it was on rainy days, and that there was no reception on mountains, my phone was away from me most of the time, social media tucked away with great landscapes in front of us. A week with each other showed clear natural, organic connections on so many levels. It was never lonely at the top, the middle or the bottom. On the way back down from our last and most dangerous climb, I took a serious fall and slid down some rocks and let out a string of swear words that is rare for me. I am not sure I've ever sworn quite that many times in a row but I'd certainly never done it in front of Kiana. When I got to the bottom, I looked up at Kiana, semi apologized and told her if she ever thought she was about to die in a bunch of rocks slide and she let out a bunch of swear words that even if everything turned out all right, she would not be in an ounce of trouble. She said okay and who knows if it was out of relief or reflection she said, well if you did die, you always say you want to die in the middle of an adventure. I laughed internally and externally smiled and said, that's true but I'd rather it not be one that you and Elaine are having to watch and remember. Maybe just maybe that fall and the thoughts immediately around it shows something about the way this kid and I are raising each other. Kiana would often shout when we were in certain areas because there were solid echos and she was amused by them. I encourage people to generally not live in echo chambers but that one was okay by me and perhaps the resounding of my approach towards life was at that mountain top when someone had laid out in rocks, 'love life' and I think each one of us at the top reaffirmed that we did.

There were things we'd hoped to catch up there that didn't happen. Mt. Denali, the great one, was not visible in any of the 3 days we were near it. The Northern Lights or even any stars were hardly visible because of cloud coverage (we did get to see the Northern Lights on our way out because it was a midnight flight out of the plane window). We got rained on the majority of the hikes and even when it wasn't raining every one was muddy and wet. But it was an absolutely incredibly great trip.

Okay perhaps not absolutely or at least not perfect. This is something that always percolates in my mind how much we strive for perfect or absolutes or totality. (There was an amusing moment in Alaska of a business building that was for sale but on the sign that had it for sale they had "John 3:16" and underneath "for sale by owner.") There were people here expressing large disappointment in that we weren't in the totality zone and I've already got facebook events for when it's total in Austin in 2024. I'm still not placing high best on whether or not I'll get to 2020 but either way I don't know that I think quite that far ahead on looking up into the sky.

In an age where it seems political or too much discourse is so black and white, where if you disagree with my wedge issue or candidate or favorite color then you are evil, it was comforting that a day that had started with rain, had great sunshine in the middle ended with the biggest rainbow, I've ever seen. There are hunters and hunted out there in the wild and Alaska has decided to leave them in place and not protect one from the other. There are other not native things like rats they are trying to eliminate but it is a minority of things that they take that approach, that attitude with. With most of life, it's live and let live and also die when the time comes. On most of those hikes if something had gone wrong, well we were on our own.

With John McCain being diagnosed with a higher grade of the same type of cancer that I do, there has been something floating in the news, the cancer communities, social media etc that I'm not quite sure what to do with. A basic google search will say that tweets of support from people like the who guy who he ran with against President, should not happen, "Cancer doesn't know what it's up against, give it hell.since plenty of people who try hard and give it all they got, well many of those still die. With this type of cancer, most of us still die from it. I've been trying to balance that with one of the mantras from Livestrong, 'attitude is everything.' Ours is a cancer that has no known dietary, genetic, lifestyle or environmental component but even the ones that have cleaner causes or cleaner treatments, there's none that have a 100% batting average or perhaps strikeout average is the better term. Even if you have cars with every safety feature and always do the speed limit with your seat belt on, random luck can happen and you can die in a car accident. Actually, no matter what, aren't the two certainties in life death and taxes (that's why I headed to Alaska to relieve my nerves on Texas tax free weekend)?

But does attitude matter? Should we dismiss it or dismiss the discourse of fighting against something within our system that is betraying something else within it? I think so thought it's not black and white and in the last 48 hours I've heard total eclipse of the heart more than I had in the last several years, even kareoked it to Kiana last night. I grant that Partial eclipse of the heart probably would not be as catchy of a song. Maybe why Livestrong go with "attitude is a high percentage change effector or at least it makes your mind and friends capacity better in the short and long run' (yeah I should never become a marketer). To dismiss attitude of fighting as irrelevant... isn't that somewhere not too far from dismissing medicine, hope, faith etc? Aren't they all ways that have given us tools to navigate life even if none are absolutely successful? A lot of life from conception to death is random but many of the things in the middle don't have to be and I believe attitude is one of those.

Neither life nor cancer is a clear journey for me, perhaps for anyone? It has had some well publicized messes and successes. My tumor isn't fully removed, it's just stable. These days the medical appointments are the exception not the regular occurrence of each month but there are still twice a day pill. I see and cheer for the people who get the NED, no evidence of disease, markers and mourn with those who it gets worse or with those who pass from it. Mount Marathon didn't have a clean trail for us on the way up or down (there apparently was an easy trail that we skipped and the tougher trail we made a wrong turn and didn't go up it). This was the only hike in which after a while Kiana had any complaints and I offered her to turn around early but she stated unequivocally no we've gotta get to the top. And we got there, with conviction and turned around with the same. We had some funs and some slips and cuts on the way down. I looked up the speeds and names of the Mount Marathon 5k runners and thats a way I thought of climbing to the top back on 4th of July when the event is held but ultimately decided that I'd rather do it at a family pace rather than a race one. Partial eclipses may not be as easy to write songs about, non absolutes may not be easier proclamations but I'm thankful to love life and find beauty in their presence. So maybe that's why there's something I can do as I continue to turn around to find bright eyes and why there's still light in my life.

Monday, August 7, 2017

Generic faces and races

A frustrating challenge of being in video media and having facial recognition issues is that people often come talk to me and I don't recognize them. The convenient time is when they aren't quite sure who I am and my standard joke about it is "I just have one of those generic faces," and after the laughter we introduce ourselves (it can be strange when a stranger in another state who happens to behind you in a random line goes you were on that ESPN piece right?. Perhaps I should stick to things like the more recent Rogue Running podcast since my face was built for radio.

But through this summer, just because it's summer and there's more time Kiana and I have been riding, swimming and running and I couldn't help but notice that the one event that I had done ever that she hadn't was a triathlon (I've only trained for one and until yesterday had only done 2). I'm a horrible swimmer but she is not and so I signed us up for one which seemed perfect, Jack's Generic Triathlon where there byline is "where you're not just a number, you're a barcode." This year happened to be the 15th anniversary so they had a little fun with it and said they had brought 15 years of generic smiles (and you know generic smiles in the age of selfies, constantly posing for camera phones and showing everyone on social media that you're officially happy is quite important). This generic face couldn't resist that invitation and knew Kiana and I had to get signed up for one. Kiana's had some very cool experiences and so have I but I do hope that she enjoys the daily scenes and local races and moments as much as the big ones. It's arguably which ones matters more in life.

My parenting philosophy is you give kids roots, than you give them wings and this event would
embody at least the beginning of letting those wings spead. (It's not as easy as I thought it would be to encourage her to grow up. When I joked about how she should stop aging now that she was 10 because that's all she could count with her fingers. Without missing a beat, she said using binary code I can count to 1023. I'm not sure whether that or today's dental appointment where they said my baby only has 4 baby teeth left was harder to grasp). But in triathlons swimming isn't interactive and in cycling you're required to not be beside anyone unless you are actively passing them. In all racing, I train the way I intend to perform so as we trained for this, I didn't ride next to her and when we swam, like the person who trained me, I'd land a swimming arm or leg to prepare her for what would come. We even went and did the course on a hot summer day 3 weeks before and I honestly wondered how much she would dislike me at the end of the race.

Still when race day came, the weather was actually very good. The tweaks we'd work on like transition, dismounts, drinking while on a bike, brick workouts, well we were going to see how they all came into play. Her paternal grandparents, both of her parents and their significant others were there to cheer her on and dad was going to stay as close as he could. However, I'd forgotten with so little triathlon experience that they let you out both in age groups and gender and well... Kiana and I don't match in that. I tried to ask one of the course people if I could just start in the women 39 and under (I thought making a joke about how I hang out with her enough that maybe I identify as a 12 year old girl but who knows how that would go over in the current political climate). With Kiana standing next to me, they said that I would then be disqualified under triathlon rules for not starting with my heat and Kiana said no it's okay dad, just start with your heat cause I don't want you getting disqualifed for breaking any rules. I was amused at that because well to do a sprint triathlon you have to be 12 years old and the person who registered her (me) might have lied about her age to do that. I suppose it's not as bad as Spartan races where her first one she did at age 8 even though you're supposed to be 14, the age I might have said to everyone she was when asked (Part of this is me trying to get her into so many things at a young age because she's capable and I honestly fear there may be too much of her life I miss if and when my cancer grows. The other part of me fears that not too far down the road her justifying to herself that her dad letting her do things when she was officially too young for them).

So I started with the men's 39 and under heat and actually swam it fast enough to where I was back before her heat started and may have gotten lost on that 500 meter swim and done another 500 behind her. If you think it was because I was watching out for her well you would be wrong because 1000 meters was the most I've ever swam in one day and it turns out it's hard. But luckily I'm a little taller and was able to start walking a little earlier and make it up as we went into transition.

She had done three formal rides before, two of 20 miles and one of 25 miles. This one was 12.9 but on those others it was stop in the middle and get some snacks, rest and socialize. Now we were in race mode and many of the people doing the Olympic distance were doing their second loop. I stayed behind her and she got cheered on by many generic strangers who were impressed with a 12 year old taking this on (in triathlons you wear your age on your calf). We were actually keeping a decent 13 miles an hour on her mountain bike with the wind at our back but then it went down to 11 as we faced a strong headwind. She didn't fade at all and while she was passed plenty, she also passed a few people and her dismount was more gracious than any I've ever made.

Then we got to our game, the running game. The legs felt funny to Kiana but it wasn't long before she was moving pretty well. She was passing people and I mean passing people. If she started to slow down I did the old fashioned running backwards heckling of you want to get beat by an old man running backwards and all of a sudden she sped up and would say 'you're not old'. In the entirety of the run, while conceding she started in the very last heat of the day, she was passed by only one person and passed a lot of other people. With about a mile left, because I'd started the watch at my start and not hers I mistimed where she was and you're going to have to hurry if you want to do it under 2 hours. She said I'll hurry at the end. She turned it on at the end and... literally at the finish line passed the one person who had passed her on the run. As she huffed and puffed after we finished. I was like whoa you really sped up on the last bit, maybe you had too much left in the tank. She looked at me and said, 'that's not how it works dad. No matter what I find a way to finish strong and pass people at the end.' I don't know where she gets that competitive attitude from. She didn't place in any age group but she was the youngest finisher at...12 years old.

We've actually done several other races this year and we've both taken home some placement trophies but it was the first finisher's medal we had earned on the same race this year, over a year since the last one, longest gap since we started collecting them almost 3 years ago. But in a race where we weren't just a number, we were a bar code, it was great that the first medal of 2017 was on her first triathlon ever. By the way, while I have a generic face, out of all the little girls the universe has, she comes first  and helps an old man with a damaged brain know his heart's still working.

Tuesday, July 18, 2017

Producing character

"Suffering produces endurance, endurance produces character, and character produces hope."

Summer is an odd time in my already odd life. People who have a similar custodial arrangement to mine have different view points. It's standard Texas one for summer in which Kiana spends the longest time of the year with her mother, either two 15 days periods or one 30 day period with a weekend in between with me. I'm known for frankness so I've heard it both ways about parents who are thankful for the break, others who don't know what to do with themselves by themselves, and one mother, the one that gave me the most to think about was that they just see it preparation for empty nest syndrome. 

Until this year, I had actually not stayed in town for the entirety of it. In it's 5 versions, there have been three of the 2 two week period and 1 of the 30 day syndrome. I'm not much of a nester so I'd leave the nest completely empty for at least part of the time it wasn't shared. 
But that's not the case this year since my girlfriend and I are living in sin. We've been doing things to the house still, mostly little decorations and such. And with no races on the calendar, at least not of my own, for the longest times in several years, I've started running more. 

Part of that is what else should you do with your time but dehydrate more by running in
summer? Part of that is that I've had good company in all of those runs. 3 weeks ago was the highest mileage of my life with my girlfriend and my bromance joking around which one was going to the highest (she beat him by a mile in the first week I ever broke 60 miles in one week). Not to be outdone, last week, he and I did 60 miles in one week on the first time I ever broke 70 miles. People keep asking what I'm training for since I'm stepping up my mileage and doing the most intense speed workouts since high school. I keep joking that I'm retired, which I presume means really tired from all the extra fun stuff you need to do. But I keep in mind the study that long distance runners have a higher brain cancer survival rate than anybody including other athletes, the theory being that it's the chemicals that are released in the brain after a certain amount of continuous running (though I fully concede that those chemicals seem to alter other things like how many swear words come out of my mouth towards the end of those runs).

But it's also because I've been helping Kiana train for her first triathlon. It's a sprint and it's arguable whether that or the Spartan Super will be the hardest thing she's ever done in one day but when we went out to try the course on the weekend she was home, she was suffering in the end. That determination and the fact that I am a believer in do as I do not just do as I say that got me to do my hardest 3 weeks of training. There was never a time she asked to stop. We may not always have great race days where I come from but a DNF still doesn't exist in our file and I hope we never add it. I've also done the entire time without music since music isn't allowed in triathlons just to show her it can be done. 

It hasn't all been work since a life that's all work would be almost as difficult for me as a life that's all play. But part of the playing has been actual plays where we went to the opening night of the Wizard of Oz. We even made the donation to be in the official photo booth where of course I had to be the scarecrow (If I only had a brain), Elaine dressed up as the witch with a nod to a little bit of our history. Kiana went as Dorothy. It was raining before and somehow right before seeing an outside play of the Wizard of Oz, there was a rainbow over the area we were going to. Maybe, just maybe, there is a place where 'the dreams that you dare to dream really do come true'. 

Where the balance of work and play should be is a great deal of debate but for me, an unemployed workaholic, I always thing work should be the over riding factor. Maybe it's justifying my approach to life but I think work can be converted into play far easier than play into work. But my parenting philosophy is coming more and more into play and work. It's always give them roots, than give them wings. Part of the reason we're doing the triathlon is in triathlons, you're not really going to be next to someone during the swim and you're not allowed to be next to someone on the bikes (that's for passing only). We went and practiced the course and we did it where she was on her own, primarily. As she practiced, she was suffering (we were much later in the day than the race itself will be cause you know sleeping in is good) but she was practicing with conviction. Suffering produces endurance, endurance produces character and character produces hope. I suppose in the original writing it might have all been intended towards one person or community but I think Kiana's endurance character is a big factor in why my hope just doesn't blink. 

Her mom was a creative writing major and is into drama so she's sent Kiana to an acting camp the last couple of years. Before she headed over there she kept asking me what part she should try out for in Alice in Wonderland Along that giving wings approach, I told her that was her call. She would end up trying out for and getting Alice's part. She was on stage and had more lines than anyone else. It was a pleasure to watch her conviction, hear her 'British accent, to see her perform theatrically that 'imagination is the only weapon in the war against reality.' Luckily they had a rule that there were no cell phones allowed or video cameras, to let the plays be enjoyed the way they were supposed. It was 20 minutes that flew by too fast but then again forever is 'sometimes just one second."

Soon she'll be home again and just by nature of scheduling, many things will be back to familiar rhythms without yellow brick roads or long rides or long swims. But I think we'll find ways to keep the balance of not running away from suffering or perhaps its better phrased of running while suffering. We'll find the endurance, the character and the hope. Who knows how the triathlon or 5th grade will go but I am glad we've used the summer to build up a base. Carrol said every adventure requires a first step so I trust and hope that the balance of good adventures are still coming up. 

Wednesday, July 5, 2017

The Benefit of the Doubt

I think most of us like certainty.... High probability is comforting but there's something about certainty for humans even if it so very little of it exists in the real world . We make days 24 hours when there are exactly zero days in which sunrise to sunrise has been 24 hours. Just like there are zero months that correspond with the lunar cycle or 0 years that match exactly with the solar one... we divided things into clean kilometers and miles and speeds based on that. Us runners run with GPS watches and sometimes find ourselves running in a parking lot up and down till that watch beeps exactly. It's interesting how much heckling I've given and taken for the fact that so many looks of excitement and anticipation are marked by us by pressing a button at the start line. The finish line look of triumph or defeat are awfully similar for many of us, it's the pressing of that same button.

I like certainty too. The balance of utilizing it is certainly clear in concepts like geometry where we use perfect circles and squares to work within the natural elements (where no perfect circles or squares actually exists). But there are laws there like gravity and inertia etc that seem to reflect a universe that holds those rules so well in a vacuum and perfectly inconsistently within the actual universe. 

But I keep trying to give life, my life, my friends lives and opinions the benefit of the doubt. I am nervous about the echo chamber that I see in the universe online and in person where anyone who disagrees with my views or ideas of insert 'religion, political belief, ethnic views, sexuality views, diet, exercise approaches' is clearly wrong/evil/stupid. Because if we don't have the capacity for opening up to ideas there is a low chance of getting anyone to open up to ours and let them dance. Line dancing is entertaining but my favorite and the most intimate is interactive. I am known for being a bit arrogant but I don't have the arrogance to think everyone, heck anyone including my own child would be a better person if they thought exactly like me. I'm not even better for thinking exactly like me. 

That there's wiggle room in life is something I want to teach my daughter. Father's day we went to a lake we planned to swim at but it was closed to swimming due so bacteria so we sat and skipped rocks across it. I had my best rock skipping day and taught Kiana how to do it for the first time in her life. We didn't bemoan that we couldn't swim there, we just went with it and I skipped more rocks that day than the rest of my adult life combined. It even went from finding the best ones to skip to seeing if we could make this one that seemed impossibly big or uneven to skip. We managed more than I would have believed. We've done it a few times since then and I think Kiana and I will skip a few more days together. 

We went to another swimming hole a few days later which had a reasonable big jump. I have issues with heights and with a crowd heckling over and over as old men and small children jumped in I couldn't get up the nerve. Without fail when the heckling however good or mean natured came, I said I promise I'll get it done. I don't know how long it'll take me but I'll jump in (it was a 2 hour reservation). It took me half an hour of standing up there but I jumped. Kiana did it in just a few minutes. We both kept jumping off both the lower and the higher one and did the last one together. I've never hesitated in letting her see me afraid or letting her be. We don't have anywhere near 100%  success but I wonder if the fact we acknowledge doubt is why we're able to beat it. Not sure which one of us draws the courage from the other.

But summer started well with her and I having some adventures. Elaine has joined us for some though not all since she has a real job. But they both did their toughest bike ride ever, one that includes a serious hill. I had done it before them and said that it was okay if it had to be skipped on one of the turns. Kiana did it on all 6 of her 3.5 mile loops the time she went and Elaine did it on all 8 on the time she went. On both occasions I joined them pedal for pedal. For both it was the toughest ride of their life so far but maybe we're all just getting started. 

Maybe is a word you find in my vocabulary a lot. Statistically speaking is in here often and in almost all my public speeches. Doubt and hope are two sides of the same coin. They are bound together and both serve a function. We have negative associations with doubt usually because we associate it with uncertainty or even criminality like beyond a reasonable doubt. Hope is the positive side of the same idea perhaps. That's the trouble with hope; it's hard to resist.  With a disease that the median survival is 7 years, something I'm exactly 4 months away from my honest thought about it are I doubt I'll make 40 but I hope I will. 

I am watching 7 brain tumor survivors right now (8 if you include me) who are all around the same testing results that I am in very different stages. Two are marathon runners who had both surprising growth in their MRI's and are now dealing with the after math of that with new surgeries, chemicals etc. They both give great aura's of positivity in social media and in conversation and at least not there or to me, express much doubt. That positive vibe energy maybe very well what's keeping them going. I've hugged them at the beginning and ends of races before. I hope to again.  There are two others who were full grown adults that the tumor has gotten them bad enough to where they literally had to move back in with their parents at an age past mine (it's arguable whether it's the parent or the child who that's harder on on many levels). One was someone who had done races after relearning to walk but moved at such a pace that they were by far the last finisher except for the nurse and the other cancer survivor who did it next to her. I won the Brainpower 5k that year and everyone wondered why I missed the award ceremony; well now you have an answer. She asked me to come visit her as this was all starting and she was trying to grip her mortality. We walked some together that day even if it was slowly. Now she says we've gotta get a running date together where I'll push her in her wheelchair around the neighborhood. You better believe that run will rank up there with the stroller ones with Kiana. Two it has been stable for so long since it was fully removed that their odds look dramatically better with one even being declared cancer free and no longer having to do MRI's ever again. One is a small child whose the one I have the most sympathy for her and her parents. Cancer is a cruel disease. I am thankful each of us has been part of the other's journey. There's times, in complete frankness, whether I doubt if my sleep would be easier if I hadn't hidden more from this but I don't think so. 

My own doubts created some good decisions along the path as well as some horrible ones. Being careful with time and money when medical appointments were the norm helped get away from that debt sooner, live with more conviction. Being doubtful the resources would ever return made the impact be less and better for Kiana. Being doubtful that I would be around did and at some level still does make me nervous about being too engaged in relationships but I keep trying, I keep trying. Elaine and I are at almost two years since our first date. This year we've been doing more races and runs together. Last week, with this month being the first in 5 or 6 years that I've gone a full month without a race, it was my highest mileage week ever. It was in fact the 1st time I broke 60 miles in week. Not a single one of them was run by myself and I ran more miles with her than I have with anyone in week in my entire life. She's joined my enthusiasm for Spartans, with me having done now both a Super and a Sprint side by side with her. I do the elite heat and then repeat with her. The Beast is the hardest thing I do each year and this year will be her first. I don't have the capacity or time to do it twice in one day so when we do that in October it'll be one lap together. We even did an obstacle workout together for Independence Day. Even independence doesn't have to be done alone. 

We've continued to team up on house improvements. Until recently all the improvements had just been done in the bedroom (insert easy joke here). But now there's been improvements to some of the outdoor lights and furnitures. We've repainted and replaced a few things; not all but a huge percentage of the new bases are gray based and that definitely let to the easy joke of when are we going to get to 50 shades of gray in the house. In fact the most recent one was a new front door which like almost every improvement we've made, they let a lot more light in. I've actually started training with her for this month while Kiana's visiting her mother which led someone to say that it was to show people who usually run with her who her boyfriend is but that's incorrect. Relationships are based on trust; if you don't trust someone you shouldn't be in a relationship. It just turns out I enjoy being around her. 

I'm not going to give up hope but I'm also not going to give up doubt. I am going use them both to fuel decisions like you do in poker or anything involving probability. Hesitation can be good so can full propulsion and you need them both at specific moments. I'm going to keep giving people and situations the benefit of the doubt and perhaps continue to doubt cancer's ability to keep being too big of a factor on any given day. Maybe that's exactly how hope and doubt can work together.  I think doubt is hope's shadow and it's what happens when you have good light. I'll take that as the benefit of the doubt. 

Thursday, June 8, 2017

Russian Roulette

With a pending MRI on a recent run with a friend, someone asked if I got more confident or less confident with each MRI and potential results. In one of my less than eloquent answers perhaps because Russia has been so much in the news these days, I said it honestly feels like Russian roulette where the chances don't ever feel any better or any worse but at best you come out with another turn and at worst you're looking at death. I've only fired guns one weekend of my life and certainly never aimed one at myself so this isn't something I have much knowledge or experience with. 

I completely grant that was not one of my better choice of words but if there's anything I've ever shown in this approach to life and death it's that well I don't pull the trigger lightly. There were 3 events the weekend before. The first was the Atlas Ride where the Texas 400 did their first ride on their way to Alaska. Almost 70 college kids will go on 3 different routes form here to Anchorage on their bicycles... I did the 50 mile ride that day and while it was not officially a competition in anyway me and the two guys in the front when it got down to about 10 miles to go, one of them said it's always a race. I was the first to finish. But that wasn't anywhere near the main highlight of the day, I started the ride with two cancer survivors who mean a lot to me, Will Sweatnam and Mike Thompson, oddly enough Will was one of the guys who was there as I was learning basic things about a bicycle half a decade ago. Mike at the time was working in a bike shop and helped me maintain the bike I would use as my car when I wasn't allowed to drive. It may have been a point to point ride but it felt like some very good things were coming full circle my first time joining the Texas 4000 as they took on Atlas.

There were 25 and 70 mile options (the 25 one started two hours later) so after I got it done I headed back out and finished with my girlfriend. She looked good in the Livestrong gear of her own and while often when we have done trail races she has been doing the longer distance, twice or 3 times as long, it was nice to show I could last longer for a change. 

But we headed there for teamwork. We went to a trail race where arriving less than 30 minutes before the start of a running festival we would put together a team of the 4 by 5k relay. We had decided if we arrived on time we would put together a team and in worst case scenario we'd each run two legs. Let's just say we didn't just put together a team, we put together the winning one. It's the 4 relay we've placed in and the 3rd one we've won. It was a cool trophy and it resulted in a shelf now at the house for our joint medals and trophies. I hope that shelf keeps growing just like the ones with Kiana and I has kept growing. 

It was pouring rain at the trail and many people headed out before the 3rd race but well I wasn't one of those and took off for the 3rd race of the day. It was an evening 10k and well... I won it. When I originally got diagnosed with brain cancer I put off brain surgery to run a marathon and qualified for Boston. It seems I always race intensely before medical appointments... 2 years ago I did 4 races in 8 days and placed in none of them but enjoyed them all. Last year I did 3 races in 3 days and placed in two. This year I did 3 in 3 days and was in the lead of them all. Somewhere it may well be the subconscious but I want to know that if some trigger is being pulled that I had some say in how much conviction it got pulled with. There may be people who call that naive to think it's all just chance but I never quite forget that I have a brain cancer that has no known dietary, genetic lifestyle or environmental components. 

To pretend like I shook off the impending MRI would be a myth but I don't pause for it. We played a poker game the night before with some of the same people who had played in the hospital when this first started and a few new ones. As I prepared for it with stiff legs thinking that my exercise is habits is my way of fighting cancer I echoed the song that was playing the background 'luck ain't even lucky, gotta make your own breaks.' I'd end up taking home not the win from the poker game but more money than I had put in. I like that approach to poker but I hope it's the opposite in my life, that I put in more than I take out. Not quite sure how that works with the laws of the universe but that's my hope. 

Kiana and I are on a mission this summer to catch some things we've long neglected around our own home town. We found a tree house that I climbed up first and reminded Kiana that if she broke her legs she shouldn't come running to me. She got up and down from the tree faster than I did. I kept trying to find ways to stay busy till the moment of the MRI and then even busier between the results.

I've been to this MRI place for years (that's both a good and a bad thing I suppose). I have no idea what procedure was happening but from the moment I walked in and for a solid 10 minutes there were screams in the background, not muffled but just outraged screams from a child. They were those primal ones that you hear and you're not sure anyone can comfort because the procedures presumably necessary. It took plenty of focus to refill the documents I'm given every time as I just kept listening to those screams but when I to turn them in it was to a new front desk lady who was named of all things, Hope. That's what the MRI feels like, somewhere a balance of primal screams and Hope trying to be helpful through the process. 

There was actually something different about the machine this time. For the first time ever they said they could give me earphone to use in there as opposed to ear plugs. They asked me what radio station to put it on and I tried while we did the first set of imaging (the one without the contrast). But then I remembered during that first set and as I listened to my favorite radio station a piece of advice I'd been given when trying new drugs which was not to have some of your favorite foods because their taste might change for ever due to emotional associations and vomit associations. I'd listened to that then so I have no foods ruined for me. The contrast they inject with rare exception makes me throw up so as they came in I said thanks but no thanks and handed the earphones back since I didn't want any good songs associated with that machine or that vomiting feeling. That would result in me being in there for the first time without earphones... let's just say the machine is loud.
But the louder part is from when it was over Tuesday evening till results this morning. I tried appropriate and inappropriate distractions for the scanxiety as we call it. Did a track workout with heavy legs, a Marathon Kids Ambassador Training Day, a social run for Global Running Day. For the 3rd year in a row I've had an MRI between national cancer survivor day and global running day... I can't ever quite decide if it's appropriate or odd that I'm stuck between those two. 

But while it may feel like Russian Roulette and while there are suddenly arguments in the news and politics today about what things from Russia we should take, the one thing I hope to not be in life or social media or my approach to cancer is a Russian doll. I don't ever want to just be full of myself. Still as I perused through social media, there were 5 of us who were due for scans and or results within 24 hours of each other literally all doing scans in different cities and states. Three I've met through brain cancer events but one was a running friend. I reached out to them and was intrigued that we had all ended up on the same schedule. While none of them knew each other I wished them all well and the same in return. 

In complete honesty, my girlfriend has asked to come to the MRI all but insisted on it but I am just not there where I'm ready to let someone join me there. Perhaps it's damage, perhaps it's protecting others or even self protection. I mean I tried to kick my mom out of the hospital room before brain surgery... I appreciated the insistence and well a thought that went through my mind in that machine there's at least room in one area of my life for growth. 

When results were due, I took Kiana with me. She's stuck with me and my results for now and sat and listened as the doctor said everything was stable. The last time one of the measurements had gone up a millimeter. This time one went from 14.04 to 14.10 which was nothing to be worried about. 6
hundredths of a millimeter matters in very few areas of life including this one but I still noticed it. The doctor talked to me about recent races, about Kiana's races. I talked to him about how I needed a new primary care doctor due to the most recent appointments (she's great and so is her nurse but I've had so many ridiculous billing issues with Seton that I finally decided I'd rather not keep dealing with them. With the most recent billing problems it literally took hours of phone calls and 16 different people before we got it solved. I left on a voicemail and will put here in writing that I'd rather die than have this process play out every time I have to have an appointment. He gave me a referral.) I talked to him about how I'm serving help develop the new Livestrong Cancer center at the new medical school. We talked about my piss poor problem and we looked at my MRI different than I ever had before specifically how near the tumor was to my pituitary gland, something we've talked about before due to other side effects. 

The last several years worth of appointments have been on the 8th of something... so the next one is December 8th. If somehow the way you spin the barrel and hold things keeps consistently keeping you alive, I don't mess with the formula. But one way I did mess with the formula was usually I go to the Hope Outdoor Gallery before an appointment to 'just breathe.' Summer time is sleeping-in time so this time I went afterwards and for the first time ever either of us, both of us, spray painted. The first thing Kiana painted was a heart, something that somehow has in my view both stayed steady and kept growing for me. 

But the story may be that for me today but it doesn't end that cleanly. Because when I got home, I checked on everyone else. They almost all got stable or clean results. But Matt, a guy who I often refer to in speeches who I talk about in media interviews like the Spartan one, someone I met at my first brain cancer event. He's relearned to walk and talk and it was after that he did his first marathon. He's why I got mohawks and a little more comfortable both with being an advocate and living with the scars. He's the one I stole the joke from that if the brain cancer doesn't kill you the medical bills will. He's the one who always tell me to leave it all out there. He's been stable far longer than me but on his scan results today, there is now a new tumor at his skull base and will have to have another brain surgery next week and likely have do radiation and/or chemo not long after. As soon as I heard the news I offered condolences and he offered congratulations on my stable one. I said I wish I could trade him spots and he said he'd never let me do that with Kiana. 
I have another race tonight, the Moonlight Margarita Run 5k, a race that has honestly never gone that well in Texas heat but we present a check afterwards from the Austin Runner's Club. I have a Spartan on Saturday. I was going to take them a little less intensely than last weekend's races and it tells you something they are the last ones I presently have on the calendar till September. But I'll go out there and give it what I can with a little more conviction and a little more purpose. I'll see my family and friends at the Spartan. Kiana and Elaine will be home tonight. I'll hug them all with a little more conviction. 

The Russians have a saying that a bird is known by its flight. Matt texted me before either of us has results and said that he prayed for us to have clear results. The years and the symptoms and the struggles of brain cancer are something we've flown through or above, sometimes with mohawks to be a little more aerodynamic. I told him all I ever hope for is is to handle the results well no matter what they are. I think loving and living with conviction is something he shouts and I try to echo it and I think despite our different results that won't change and I really believe that for both of us that's handling it well.