Wednesday, June 18, 2014

Award Winning

(on an introductory completely unrelated side note, if you've ever doubted that this blog isn't raw, uncensored or unedited, Livestrong which I love and will support till my dying day wanted to share the majority of the content of the last blog but wanted to clean it up to sound smarter than I am,, compare those two and you can see why I will never ever write a book :)

While we're on that side note I'll never  completely quite understand why I get invited to speak at those types of events because everyone else their has their brain working, I'm even more confused why there is media pieces about a guy who puts one foot in front of the other. Still, two of the video pieces that were done about me have won awards, one print award has as well and a third news one is up for contention. They're nice enough to let me know they won it though I have no idea how all that stuff works and I'll tell you a secret other than the ones where I am there when they are shown to people I haven't watched most of the videos.  I figured it has to be how cute my daughter is that wins the awards in the media. Still,  while making good content is their game, I am working on stepping up my game in running, yesterday and the day before doing back to back track workouts for the first time in forever. My upper body is in the best shape it's ever been. I said that if all medical appointments went well in April and my pick up line no longer had to be will you pick me up if I was cleared to drive I'd be more open to relationships. So hear me here and hear me well, George Clooney's engaged and while I may not get married one year to the date of when I meet a girl like he did but there will be no more George Clooney girls in my life. If I am fortunate enough to make a connection well, we're going to do it the old fashioned way and you know go on a date and pursue her instead of running from relationships and maybe like you know get a girlfriend for the first time since high school. If anyone doubts I'm serious I met a cute girl and for the first time in my life, though it took 3 tries, I got her number and got a date. I honestly don't know what I'm doing and it's probably a little more complicated than putting one foot in front of the other or obstacle courses, but hey if we're talking about awards, if life is a game, love is the prize.

But with that said... let's talk about a prize I actually have achieved and not just one I'm dreaming about... while Kiana's in the middle of a two week summer stay with her mom, she came home for father's day weekend. A blog came out about me from spartan on father's day  which was incredibly kind. It was perhaps my favorite post because while I happen to be in three different Spartan things in June (the slow news day continues but the other two were about the Austin race and the charity challenge). I know good and well that part of the reasoning I'm getting parenting better than before was because I had so much room to improve before cancer. But like a medal at the end of a race, it's nice to get some kindness. It actually inspired me to do the workout of the day where I was supposed to carry a log for 1/2 mile increments where Kiana pretended to be a log. I hadn't carried her for anywhere near that long in probably a few years and let's just say she's growing.  Still, some of the workout was burpees and jumping  jacks and some of it was running side by side.

Still... that wasn't my favorite part of the weekend. We  had fun with flowers and yard work. We got a pedicure. But in a rare happenstance, she woke up before me on father's day and came and woke me up with her father's day present. Medals hang in her room of every race we've done together. There is a trophy case in the living room of the races I've managed to place in. And somewhere, somehow she'd thought of that making a trophy that said "Dad of the year" (though it's questionable whether it says dud of the year.). And I loved that she gave me that for many reasons but the main one is that it's "of the year." With the spartans, I try to get less obstacles failed and faster times. With the road races, I try to get a faster pace in. And what I loved about Kiana's father day present was that it was just "of the year." Not best dad ever or best dad of the century. Somewhere, whether consciously or unconsciously, she reminded me that relationship are something you should keep working on to keep them on top of their game. It now sits front and center in the trophy case. With all the races that I've ever won, I try to get back to defend the title. There's lots of those I haven't pulled off but some have been back to back titles. But in order to do it, it requires at least holding onto your game and usually improving it. That's what I hope to do with fatherhood and loving Kiana cause I wanna defend and keep nurturing in growing the qualities that let me get the title more than any others I've ever gotten.

Monday, June 16, 2014

Changing Centers

Maya Angelou once wrote "The need for change bulldozed a road down the center of my mind."  A woman known for many soft and hard words, that was the quote that couldn't quite escape me as I had the privilege of attending and sharing my story at Livestrong's Patient Centered Cancer Care Symposium.

For two days, there would be brilliant minds from doctors talking about new approaches in medicine to designers talking about the music centered teenage branch of hospitals about how to make the approach to cancer more "patient centered". The life stories of the speakers alone told you both about their personal history and the projects' potential. From the openers like Tom Kean who was retired and still dedicating himself at age 72 to help out with this cancer cause even after achieving some impressive awards to people like Randall Carter of Planetree and Ellen Beckford whose brains are much better me and whose selling point was somehow a great balance of both evidence and compassion, they shared bits of information of how the system could be much better.

But their characters were also revealed in that these guys here had turned down other "high power" positions to be the new dean of the UT medical school, to guys who had helped the YMCA become more family centered in tough communities in simple examples where people who had been randomly thrown together had suddenly joined to become a singular team the next season (though they would lose every single game definitely found one big definition of winning). The anecdotes would continue as they shared pictures big and large of how costs mattered at the macro scale (talking about projects that costs more money than I can imagine) to little things about why hospital gowns could change from design (there are medical procedures where your backside is irrelevant but for some reason the gowns are still one size fits all) to letting people pick out colors (raising a little girl, trust me this make a difference). The mission and respect they had with each other showed both in how they paid attention to each other when in agreement and how they learned in discussion and debate while in panel and table discussions.

From my perspective, there was an echo of a blog I wrote long ago ( about how a restaurant should be created where everyone got separate bills from the waiter, janitor, cook etc with undecipherable explanations. A speaker shared that it was amusing that this conversation was even being had since there was no restaurant where they would try to have a customer centered experience. What was the norm in most industries had a long way to go in health care. But even he conceded that he wished he had been invited to a hypertension patient centered care forum since cancer was much more complicated.

My invitation came to  share because of some of the best and worst parts of the story were relevant. I've long said that the only thing I cared about when this all started was the medical stuff and the financial things. Luckily for me, Livestrong was there at the beginning and while the seeds they planted would not get appropriate nurture for me initially. While that would delay in coming to fruiting, some of the very things that do matter as a chronic patient matter would come to matte  a lot more to me like  how it affects family, emotions, caretakers.

I shared my story about how I "fired" my original set of doctors and picked new ones because those first set didn't seem to care that the first set of anti seizure medications made me feel so much less of my personality (what's the point of healing if you lose so much of who you are?). They were fired because they wanted me to stop running but it turned out it was maybe because they weren't athletes themselves (a mystery to me that there are doctors who don't work out). For me, this had started in the emergency room for me with a cancer that has no known dietary, genetic, lifestyle or environmental component but I am glad that I learned the lesson early on that despite my cancer being a random draw, my choice of doctors didn't have to be. 

Our was a panel discussion where the three women I shared the stage with where all out of my league. The moderator was a professor at the University of Texas, Dr. Barbara Jones (Unfortunately, I forgot to start a debate about whether Ph.D's or Md's were the real doctors). The two women on the panel were both CEO's of Rallyhood INC and the Texas 4000. My speaking and sitting point was in between them and I'm not sure I've ever been surrounded by that much brilliance. As Patti, a 5 year cancer survivor, shared her story of she she found out about her breast cancer on Halloween while dressed as batwoman and her husband as batmen, she talked about both the good and the bad and the ugly . She also shared some of the humorous tidbits that are somehow best understood by those of us who sit in machines and take in chemicals. Somehow it's in those moments where you realize that being a patient is the loneliest thing and somehow still where you most appreciate friends and family. But she shared what definitely has to be one of the best breast cancer tshirts out there: of course these are fake, my real ones tried to kill me. 

Jen Garza who chose to spend her birthday in this panel would talk about how she met the love of her life and married him late in the cancer process. She shared some of the most touching and ugliest moment (perhaps the ugliest moment I heard about was someone showing up with a bill in the middle of a rough treatment session). She talked with an affection that was soft and kind and showed love really does have a capacity to break down some serious walls and overcome some odds. She talked about how we cling to humanity like when Ruben would not take music during treatment since he didn't want music ruined. She walked around sharing how they would leave hospice care to be able to go to concerts and how she got a doctor who told them when they had 3 days at best (it would be only one) who was also at the symposium. It showed the doctor was ahead of his time then and now that the approach hadn't changed. 

We had a question and an answer time where I shared a bit of my story about the running parts I got right and the relationships ones I got wrong and I answered an awkward question about marriage about how I got to change my approach to relationships after cancer with some guidance. It was a candid painful answer to give of how long it took to realize that cancer was affecting a lot more than my left temporal lobe. 

Throughout our presentation and others, there were human moments. There's only so "professional" you can be when you're talking about things wrong in your blood and your anus and your breasts and your brain. There was a woman at the back catching the humanity in the back with drawings of the presentations. There was a photographer who not long after I met her gave me a hard time about the fact that I was the only one speaking who there were two posters of on the wall (she said, "don't worry any pictures I get of you, I'll try to make sure you have a double chin in them, she was much cuter than me so I should have been taking pictures of her). There were people sharing beating odds and still standing much longer than expected and others who described lost battles to cancer. The second day was a breakout where we were told to design centers and while in each center there were 3 different groups for a total of six (health care providers, hospital administrators, insurances etc), in both rooms only one group came out of each, showing a merging of minds, heart and effort. 

Out of all the presentations, the three of us were the only ones that received a standing ovation. You could say it was our creativity, or our honesty, or the ladies' charming good looks. But I think it was because the attendees where there where focused on that the best part of present and future care is patient centered. So if you come in with the mentality that the patients are human and thus the center, how could they not stand up and applaud? I attend enough medical appointments to know that the model there is not quite normal enough but the people in that room gave me hope that the change will be something they bulldoze to get to the right center. 

Friday, June 13, 2014

Picturing Home

There has been a definite pattern to the trips I've taken since waking up brain cancer... some have been blatant exception where racing is the reason but without exception, without exception, I have never gone and just taken a trip without making refreshing or making some meaningful human connections. On some of these, I've learned the old adage is true that strangers are just friends you haven't made yet. Some of the people I've met through the Spartan were good to see because are charming and cute and a great part of the recent present and indefinite future. There were 3 friends who had come from Austin with me who had finished their Spartan beast. But it may tell you something that the place I've been to the most since getting cancer is California, the last place that had been a "permanent home," a place I'd given 5 years of my life to for a degree and an internship.

Because Kiana was spending the first couple of weeks of summer for an extended visit with her mom, I stayed almost a week made it up north to wine country (if you want the most amusing theory as to why I have cancer, while I was in college me and some friends stole a bunch of grapes my freshmen year of college, tried to ferment them, having made a deal that we each had to drink a shot. The internet was not what it is now and lets just say our 6 week method of fermenting wines was the worst thing I've ever drank, and I've taken some gross meds and done spartans where I ended up with river water and mud in my mouth. As I put that confession in a public I remember that stealing grapes in wine country is a crime and really hoping there's a statute of limitations from it having happened in 1998). I had done a similar trip shortly before the surgery and had 2 or 3 meals in the area where I'd said, hey I'm going to be here, can you make it and friends and college professors had shown up. In those, I'd taken the classic move that we do now of a big group picture of everyone smiling ;). This time I took a slightly different (and until now secret) goal. I took those pictures with me from the north Cali trip and did nothing except put them in my phone. I had reached out to every single one of those persons trying to make some time with them one on one in California. It was finals week at the college and I was there midweek so I knew that getting too much time was less than realistic but still I dreamed.
There would be some moments where I was staying where I was reminded that supposedly close only counts in horseshoes and grenades, a game I would play with two friends while there, having one on one, or one with family meals (the adage is wrong, close counts so much more, so much more in  relationships but just pick good people to have relationships since you don't want them throwing horseshoes or grenades at you if you get into a good fight. Luckily, I don't have to worry about if anyone around me is good people since only good people could ever put up with me) And so I went to Pacific Union College and got a parking permit and started walking to the three buildings where I'd taken what felt like 90 percent of my classes as I graduated with a BS in Psychology, a BA in Theology suma cum laude with honors. And there college professors I would sit in their office. Some of them had seen the media stuff so I couldn't resist but tell the joke that they had lecture me for hours, given me far more homework and projects than I thought myself capable of. And now what I became known for was putting one foot in front of the other with a little girl... boy had they been a waste of time and money ;). But the dream had come true that while we couldn't help but discuss some of this stuff, these were conversations where there was the beauty that I'd just driven up to see them for the same reason I hope I'll always do for the people I love and appreciate, not because I was having a medical appointment in a few days but just because. Oddly enough there were no pictures this time and it felt more like the normal college conversation you'd have with friends where you just crash into each other talk, say hello, say goodbye. We'd trade stories about kids, politics, cooking and retirement and well let's just say that even the guy who lives as publicly as I do knows that if you don't keep what's personal personal, then it's not personal. 

Did I get to see every friend and professor in those pictures? No, the universe is not that kind to anyone but I hit a higher percentage than the odds are that I have of beating cancer and while I'd hit my fastest spartan beast a few days before, making sure to make more time of these guys was the greater experience.

But even the guy with memory problems got one more beautiful moment that I'll definitely remember. There was a woman who long before she'd met me had lent her place ( to raise money for brain cancer research. She has done it three times for Austin and one time for the Duke race (I'll be raising money for the Brain power5k so be getting your wallet ready). I had won it the first time she had done it by being the lead fundraiser for the Brainpower 5k and she was beyond insistent that I come and bring Kiana which I did over two years ago. It was the first post cancer vacation really after dealing with the messes of then and oddly enough it was a trip I'd take and wake up in an ambulance two days later so it was a little slice of heaven in the middle of some messes, a reprieve and a breath of fresh air. Let's just say it was a special enough meal to where I definitely took a picture with an angel the universe had finally allowed me to meet. 

I don't know how the universe has allowed me to travel so much since winning Gusher but I'm grateful for it. But there was something very cool that made this California trip one of my favorites. This was the first time I'd rented a car in years and my friends left a day before I did but they gave me a hard time about how I kept walking to the passenger side most time (the two running friends that came are among those who had given me the most rides). While it tells you something about my brain that I finally get to rent a car and I use it to drive the most crooked street in the world with Lombard street in San Francisco, the last place I'd park it was at a trailhead. I'd walk up in late spring wearing a jacket to catch a view of the Golden Gate Bridge I never had taken in. And then as I got in the car, looking back at the bridge and the vacation knowing I was speaking at a Livestrong Conference the next day, and running a 5k that night and then off to a track meet the day after that, and then spending father's it was just an emotionally touching moment. Because I was both sad and happy to come and go because this trip felt as I got on the plane that I was both leaving and coming home. 

Tuesday, June 10, 2014

Rising and falling

There is some solid logic each of us receives when told to focus on our strengths, utilizing what the universe has been kind enough to hand you to do so. But life has been kind enough to expose me to some of my weaknesses some in my body and some literally in my mind.

So when it came time to do my second Spartan Beast in Monterey, CA I remembered that I do these challenges for many reasons like the great people I've met along this Spartan path. Still, the one main physical reason: because it challenges my weaknesses and it gives me a chance to do them better. PR's aren't as significant here because in trail running much less when obstacles vary, speed isn't the issue. Plus if how quickly I can put one foot in front of the other was the main goal... well I'd get on the easier road courses or on a bike. Here, while it's called technical running, to me, this is natural running. Oddly enough the song I was using as my pre race pump  up the 7 lions born 2 run was because of the following lyrics:

If the sky turns black, it don't matter
We know the sun, is coming up
Built so strong, it won't shatter
We-were-born-to run

But somehow just as the race was about to start I noticed lyrics that I'd never realized were there even though they are the opening to the song: 

Y'all know what it is
You gotta push though all your obstacles
Nah’ I mean?
No matter what the options are
There is no lose, there is no fail
Let’s Go!

So as has been the goal with every spartan, I wanted to fail no obstacles (something I have achieved only once despite having missed only 1 in 3, 2 in 2, and 4 in my first one. But because in Austin I had finally managed to nail them all, I had been seduced by the videos of some people who seem to do to the obstacles more aggressively, more quickly. There is a fair and valid argument that slowing down to not risk the 30 burpee penalty is important but hey when you're racing in Monterey, which translate as King of the Mountain and you're trying to earn the title of Spartan Beast, go big or go home.

So I started running, trying to learn how to do the technical side of running smoother, better where those hills made you wonder whether you were stepping or steeping your game up or down. The beauty of spartans is that I do it infrequently enough and they're creative enough to where there are always new obstacles. One of them was
taking a cargo net  and using it to get over a river. I nearly slipped because there was metal in the middle of it and I hadn't thought of the fact that the grip there should be "handled" differently. If you look at the picture of when we're about to get on the cargo net... you could see immediately behind me why while I do road races with a shirt and the ones with spartan with the make him work for it... it's because it's such a great looking shirt ;). I got all the way across, trying something I'd seen in pictures and video of hitting the bell with your foot to hit it quicker and then letting yourself go. I was proud when I landed it's arguable whether the look on my face is happiness or smugness.

Perhaps adding to the old adage that pride comes before a fall, not too soon after that was the obstacle of the balance beams. I'd never missed that one, not even come close so I took it quickly and most of the way through lost focus and fell off. I went over and did my 30 burpees (the thought going through my head during those starts with I hate burpees and by the time my brain has been up and down that much it's I burp hatees). Still, there was enough clarity of mind to where after I asked the person running the obstacle if I could try again after I did my burpees, even offering to do more if I failed again. She said I wouldn't have to do more but I could only try once. I did and got it.

There'd be more running, carrying buckets full of rocks, bags full of sands and places where it was really more climbing than running or even walking. The rope climb was the easiest and fastest I'd done it showing I could at least hold up my own weight. At the water stop there were some volunteers who were enthusiastically handing water bottles picking runners and others who were just waiting for a thicker crowd. Let's just say I might have taken the water from the enthusiastic ones and splashed some enthusiasm into the ones sitting around. We both left from that water stop smiling.

The running and obstacles continued where I was told that the sand I'd pulled up a pulley, I had not let gently down enough. 30 burpees, repeat till I did it right. The obstacle I've missed the most consistently (I'm just under 50/50 at it) is the spear throw since for some reason I don't have a spear sitting around at home and so that was 30 more burpees. And very near the end there was a 4 tire swing where you were supposed to swing over tires... this one wouldn't have been a problem except neither I nor the person next to me had ever done it before and when we crashed into each other on the second to last tire, it killed both of our momentum... we both tried to get it going but when they gave up on it and they looked more experience and dropped down and did burpees, I did as well. The second time with the tire swing I approached it with a lot faster of a run and swing and did it without issues. There are things in life you only get one chance at. But the Spartans both because they only happen 3 times in Texas per year and because the obstacles aren't available for me to train on anywhere, I wanted to assume that it was like life. I may not have another chance at that day. With each of the obstacles I got to do do again, I took the penalty, took a second shot and got it. On some of those, it required a short wait to make sure I wasn't in anyone's way who had not messed up, making sure to not slow anyone down. I've long called the post cancer area of my life, Life Part II but it wasn't till my 9th spartan race where that idea occurred to me.

As I shared the approach I'd taken to become an honest beast, there were those who question whether it was noble, creative, or dumb. Those are all words that were used about me running road races with a stroller so at least I'm consistent. There were someone who said I killed their buzz of finally having beaten me in a spartan and I told them they had beat me honestly... No one had told me to do it my way and add time and effort to my penalties. Still, while PR's are kind of less relevant in spartans

Spartan has this great goal of doing the 3 distances (short/sprint, medium/super, long/beast) to earn a trifecta. I had done it last year. And while I'd much rather do it without having gotten any penalties, I am greatful to have done it in a way that all the obstacles got done. I'd risen in some obstacles, failed in other, risen and fallen in a lot of burpees. But while I was nowhere near the winner, I think on this Spartan, I did not lose nor fail but at the end of the day it was a high note to rise to earn a trifecta.

Wednesday, June 4, 2014

The Lucky Ones

Perspective on life is a fascinating subject... there are people who seem to get incredibly upset about the all but unavoidable things in life like flat tires or traffic, who literally cry over spilled milk. I've long said that I take cancer like a poker game and you play the odds. People don't get to decide many of the cards life handles us but being conscious about choices as you get older is something that I just can't accept as destiny. Some of it is wiring, there is probably no way to downplay that some of our fatness or skinniness, our personality, our iq etc are programmed... I don't believe in the mythologies of you can do anything you set your mind to (perhaps because I have a damaged mind) but I do believe that you can choose how to approach it and do it better. And if I have to choose between someone who aims high and fails it's better than someone who aims low and succeeds. Or as my grandpa used to say, it's good to aim for the stars and land on the barn roof. And some of the people with some of the worst cards dealt with  in this poker game of life are some of the best reminders.

One of the groups I help organize and have helped raise money for is the young and strong adult survivor club. It's for people 18-39 who have gotten cancer. Cancer childhood rates have improved for obvious reasons cause kids are the best part part of somehow both the present and the future, older adults ones have survived because well that's where the money is and money does make much of the world go round. For over two decades young adult ones have become static. But psychologically, it's tough because everyone else is looking for college or a spouse and settling into their careers and all of a sudden you're dealing with a ridiculous number of appointments and a range of prognosis. So last weekend when I went to the most recent gathering, I was just amazed and humbled to be standing among the crowd of a phrase where a few different people referred to themselves as, 'the lucky ones."

There were two who were brought by their parents. One has a prognosis of 6 to 12 months from diagnosis and once she had heard I was a psychology major wanted me to psychoanalyze her, whatever that means. And she was fascinating and positive with some quirks about hair and make up that perhaps just from being male I'll never quite understand. But as she talked about how her job was her baby, how she had gone from working heavily to being unable to work and living with her parents, she said something that was very memorable. She is in month 7 of that 6-12 month prognosis and was glad to be one of the lucky ones that gotten that far. Not, hey I have a rare cancer that will cut my life shorter than most people but despite the fact that I have it... I'll outlive a fair share of the few people who have it.

There was a young man whose also got a brain tumor who lived with his parents and has dealt with it for years, whose dad was asking one of the navigators about some things going on. There was a girl with a brain tumor who had to have some things wired/piped (what's the right word here?) so that some of the excess fluid from her brain is being drained into her stomach to decrease some issues. There were people who  had to live with things attached exterior to their bodies for reasons that well I'll not go into too much detail but let's say that's part of why we have these types of groups so that you can share it and have people have sympathy and understanding more than grossed outness. There were those who were bald and proud, those who covered it up, those who worked harder than others at covering up the scars if they were anywhere obvious. But more than once from these survivors, some which won't have that term for much longer realistically speaking, they were glad to be the lucky ones.

There are times when I realized where I'm tempted to whine more about some of the things that have gone badly in my life. (Generally, I'm a positive guy, but when the crossguard recently asked how I was and I gave my pat answer "Oh I'm always good," Kiana corrected me and said "you're usually good not always" and the crossguard with a smile responded, "from the mouth of babes.") But certainly during those times I try to remember and share the attitude of some of the people here. 

Perhaps it's naive idealism or hopeless romanticism of the old quote that “You never know what worse luck your bad luck has saved you from.” But I think the simple act of choosing joy makes you one of the lucky ones. I'm converting more and more from hopeless romantic to hopeful romantic and choosing like these folks do to believe that despite unpredictable circumstances, I am one of the lucky ones.