Thursday, August 21, 2014

Launching Change

Henry David Thoreau wrote about how we must "live in the present, launch yourself on ever wave, find eternity in each moment." How to do that quite that consistently may seem over ambitious but I imagine it's no different than good nutrition, good exercise or work habits, the pattern is predictable of impressive wave riding. But every once in a while there are those moment are where you see the seed that will launch tremendous waves. I had the opportunity, no the privilege of attending what I fully believe and hope will be just that in the world of health care. A few months back, I had previously been invited to the ground breaking of the new UT Dell Medical School. There were many cool moments about that but one of the things I was most impressed by was that the dean of the medical school said there was not going to be some ceremonial breaking ground with guys wearing suits using shovels and hard hats as is often the ritual in this type of circumstances. To each his own but somehow I was impressed by that, that he acknowledged and was prepared to think differently than putting shovels and hard hats in the hands of people who most likely ever only used them for ceremonial things.

Here, not too far down the road, actually it was slightly northwest up the road at UT's famous Main building, on August 18th, 2014, I was also invited to the launching of the Livestrong Cancer Institutes (http://www.livestrong.org/cancerinstitutes). I love Livestrong for many many reasons... the knowledge they've provided, the people they've united me with, the attitude they've helped me embraced... they're all bridges you feel safe with. They frame things differently, and not just differently but better. I've gotten to be part of their events before with the most recent one before this being a symposium back on June 12th, certainly an unforgettable day in my notebook, where they gathered people from all over to throw out ideas both from the stage and in discussion groups on patient centered care. I saw so many ideas with so much potential being discussed but potential and ideas are useless unless they are used. 

Here in my hometown of Austin, I saw two places I love joining forces and see some of those hope growing closer to reality. UT Austin is launching the first medical school that has been established in the US of A since before I was born. While the buildings and professors are set to start taking students in 2016, the concepts have been taking place for years. Within it, Livestrong is launching the cancer initiatives and pledged $50 million dollars to the Dell Medical School over 10 years taking them over the $3 billion dollar mark necessary for all this. The cancer tips Livestrong they gave me in regards to not just treatment but finances and just as importantly emotional and social things will now be part of that hospital experience with patients getting those options and advice as quickly as possible after they hear you have cancer. I know I was fortunate that a running friend connected me with them within a few days of my diagnosis... it's good to know that for future Austin patients it will be a normal part of the process not just luck that someone knows about it. 
When Kiana and I arrived at the building someone was kind enough to invite us to the front and center section of the press conference launch... (I can't say I didn't both feel unworthy and nervous of how was a 7  year old going to handle a bunch of older guys talking about many things that was above my level of comprehension much less hers. People were impressed with how well she behaved but let me just acknowledge that we were holding hands most of the time and playing a game where she had to keep track of how many times I squeezed her hand and squeeze it back that many times. It was a random amount that we got as high as up to my age, 34. I question my parenting often but if squeezing my princess hand keeps her smiling... I hope that means I'm doing something right. It was also fairly encouraging to have her ask questions about some of the things they were saying which I would answer later when we got home). There we would hear Senator Kirk Watson share about his own cancer experience, acknowledging that when he received it he got above average care and in gratefulness try to make that experience available to more and more people. I'd hear Jeff Garvey Chairman from Livestrong talk about the numbers that are impacted, the President of UT Bill Powers talk about the moment's historic authenticity of two Austin arenas that are committed locally to the University's Motto that "What starts there changes the world." The dean of the medical school Dr. Clay Johnson would talk about how they are unbound by any current rules of medical bureaucracy. There was conviction about how they intend to rewrite the playbook where they will teach their doctors that results matter more than procedures and educate them that the medical response will be more than dealing with the tumor and treat and help patients as humans who happen to have a tumor. A hero of mine, Doug Ulman, three time cancer survivor talked about the things that Livestrong has done for so many outside of the hospital experience and how Livestrong intends to and will be a part of it. If, no when this succeeds, well it will be one more methods in which example leads the way. 

Three of survivors were highlighted in a video presented in the conference (or five if you include our kids, Kiana and I were among them). Ceremonies are important and the public statements gave me much faith that this school is going to be the greatest medical school the world has ever seen. And I know some of the track record of these guys professional  from Livestrong's top brass to the volunteers and interns all showing that they have amazing hearts and incredible capacity. There was plenty of press there and I was asked to share some of my story with them for local news. I've crashed into enough people today who saw it on the news and told me about it but this one was the one that made Kiana the most happy (http://www.kvue.com/videos/news/2014/08/20/14156236/). One of the questions I was asked was what I thought about the $50 million dollar donation... while fortunately it didn't make the editing, I answered I have no concept of what $50 million is (though I am fundraising for Livestrong currently, https://www.crowdrise.com/EpicStrongChoosesJoy). Yet it was clear that the heavy hitters who had a lot more to think about and share than just their personal story, those who had captured the dynamically large vision, knew what they were talking about. 

Still with that said, after the launch, there was a lunch (maybe I thought that's what they said when they
inviting me to). Professional stories were also shared more informally there. The dean of the medical school I got to hear about his neurology focus and how his frustration with how little we knew about the brain. It had been slow enough to where he moved into research and then leading change into how that was done and now to the be the dean of a medical. That passion was evident as he talked about how they were going to do things a whole new way. But he also told me about his two young children and their reactions to some of his ideas and how they got wide eyes like he's seen on Kiana. Doug Ulman, the CEO of Livestrong, whose passion and impatience balance itself into his survival and his urgency wanted a story like his far more dramatically than mine about carrying his own medical records from doctor to doctors. He was kind enough to give me a ride from the event and as he mentioned his three year old, while my daughter Kiana was in the backseat of his car, he said a simple human thing don't worry about the ride, I'm not the talking and texting while driving type. The president of UT Bill Powers talked to me about his wife having pushed strollers and because she was faster than him running the first mile of races with him and then turning it on and being so impressed by how she would pass so many people while she was pushing a stroller. He also said with a twinkle in his eye that his staff was going to hear about how did they miss the opportunity of getting a press picture of him and such a cute little girl.  And so between their public media speech and the one on one human moments, I had full assurance and hope that two world forces have taken a giant step forward in making cancer specifically less relevant and the overall medical world better. 

Thinking through all this, I remembered some things about my own journey like I was amazed (in a bad way) that it wasn't until almost 3 years into this journey that the capital of Texas finally got a neurooncologist. While I could have driven to Houston or Dallas (I flew to Duke), I am glad that the best option will be here.   I've long joked that this is all worth the hassle if Kiana becomes a neurosurgeon and she'll have the option of studying right downtown (where she'll come home for her 9 o'clock till she's 30 curfew.)

Maybe my world won't keep being this stable or my health this solid. The dean of the medical school was kind enough to say maybe I'll have you talk to the medical students in a couple of years and I said, I hope I'm still standing then but that'd be great. I am appreciate of the front row at the launch and in no time at all when the medical school is standing, Kiana, Austin and the world will be better for it. 

Thursday, August 14, 2014

Personal Ghosts

There is an old idea that in a room where people are interacting there are always several ghosts. For each of us, there is the person we actually are, the person we are trying to portray and the person being perceived. The adage is that the more people are in the room the more ghosts there are. There are people who think they've found someone who fully understand them... perhaps such a case exists but I'm not sure that I've ever seen it and I've certainly never experienced it but I sure have appreciated those were it's been awfully close. Even me, a guy who theoretically writes a raw, uncensored blog knows why we invented shaving, collared shirts, gel, make up but also we made up special underwear, toilets... because we want some things to be highlighted and some things to be private. I've sat through enough medical procedures where almost no bodily function is left as completely private. On the emotional side, some people want more private and more public disproportionately to the other... some deal with their private ghosts publicly or their public ghosts privately. But at some level, I still echo George Clooney's idea that if you share too much of your personal life then it's no longer personal. But even now the eternal bachelor's getting married... a friend joked with me that this shows how the mighty can fall... all I have to say about that is if you love someone enough to dream and commit to spending all of your life with them, that's rising to something not falling.

I'm thinking about connections because today my "formal" relationship with my counselor ended. While I've had friends and family, some which have been there all of my life, some which have definitely been there through every part of the mess, and some which I have no doubt will be there for as long as I've got left. However, I've also met with this counselor 3 years, though less and less so recently. I am not too proud to admit I needed help and in fact only grateful to say that he was a very necessary God sent part to be standing where I am.

When the counselor and I started meeting back when I was a probation officer dealing with cancer's after math and a divorce. I would meet with him through the custody challenge, after the job loss. There was one time where I appeared so down he asked me if I was suicidal (I was not. In light of Robin William's suicide, I've been thinking about that. I met Mr. Williams once briefly at a Livestrong function. I don't make strong statements from getting short time with people but he seemed like an absolutely genuine and helpful person.) I watched Mork and Mindy, Dead Poet's Society, Good Will Hunting, Mrs. Doubtfire, Aladdin etc. He apparently was known for improvising many of his roles. But he struggled with his demons openly and publicly often with drugs and counseling and three marriages of his own. Probably the quote of his that has stuck with me the most was "I used to think the worst thing in life was to end up alone, it's not. The worst thing in life is to end up with people that make you feel all alone." I've experienced that and fear I've caused it but I am relieved and hopeful that both have been on the minimal scale. But I've never been suicidal and am thankful that I've never felt anywhere near that alone. But if you are please reach out to someone long before you get to that stage.

I try to take in the simple reminders like the ones that came on my birthday a few days ago. In the age of twitter and facebook and email texts, i was thankful for the messages I received through media. I tried to thank each one individual since each of them had individually taken some time to remind me I was born. I received some old fashioned in the mails cards all suggesting I was a non conformist... I had one where the kid born 8/8/80 whose favorite number is 8 had the 8 turned sideways... That's one of those moments where you  are happy enough hope life last 4 ∞. There were a few gifts which were all chocolate and/or alcohol... So the ghost that's being perceived is a chocolate addicted alcoholic. There are worst things to bond over I suppose but I was glad to have some bonds. 

Yet is is thoughts like that or echoes of those connections as to it why I've managed to make any progress at all. My best friends, my family, my church, this counselor were the ones where I could lay down honest thoughts. There are people who don't want judgement from people but I appreciate a good challenge so I always wanted them to say what they were thinking whether or not they agreed with me but my favorite ones are the quick witted, intelligent people who go to toe with me. A girl I'd climb walls with and I were having a conversation about why we choose the churches we do. Theology and community etc etc matter. But the short version for me is that my favorite parable of Jesus is about the two sons who were both told to do so something by their father one says he'll do it but doesn't and one says he won't do it but does... guess which one is the good son? And they are believers but they are also real... a good chunk of the time I come after a Sunday morning race literally reeking and people there literally embrace me. The latest sermon series has been about relationships and the last Sunday ended with a Q&A time. It was about how wives can get their husbands to pray more with them and another questions was about how husbands can get their wives to be physically intimate with them more. While he gave a more thorough answer, he quipped from the pulpit well maybe they can workout a deal where they trade it more :). That's the kind of church I go to.

And the connections I keep working on and am grateful that others are working on with me... still believing that the smartest thing I've ever said is that you have work on the relationships you want to keep. The executor of my will and I had lunch yesterday; to show why we're such great friends he still mocks me about the fact that despite the other media stuff, I'm not really relevant since I've never been in the onion. I am focusing on trip details with someone who can tell when I don't recognize people and is helping me with the speech; they help coordinate the things I struggle with. My daughter is at Camp Kesem with Livestrong so she can meet other kids whose parents have been through cancer (it is a minimal part of the experience because like all Livestrong things does, cancer is meant to be dealt with, belittled in a proper way so that life is better done). 

Appropriately enough, meeting with the counselor was the last thing I did before heading to Beaumont where I'd win a marathon last year,  that has turned into a ride I would have never imagined. (If you're wondering what I mean by that ride when I signed up for that marathon 9 days before winning it, I thought it'd be one more race with a stroller and that would be that. I never imagined invitations or media pieces or articles).

With that said, I try to take that seriously. I finished the logistics a few days ago of the speech at the Pocatello Marathon (http://www.pocatellomarathon.com/index.php?page=pasta-bar), the return to the Spartan Championships and Charity Race (https://www.crowdrise.com/EpicStrongChoosesJoy) and I just signed up to join Voices Against Brain Cancer for the New York marathon. My team is currently in the lead for most fundraisers and most participants for the 4th Brain Power 5k (http://bp5k.kintera.org/faf/donorReg/donorPledge.asp?ievent=1101528&supid=356919075). I believe none of this would have happened with the right people leading me to better at running but also better at being human. Some of that has simply been from meeting other people who shared parts of the journey that made the person you portray and the person perceived as closer to matching. I got to meet a family in Portland at the Spartan whose cousin died of brain cancer (He was hoping to beat the 5 year mark since none of the other doctor's patients had. He would not last the longest but he almost got there.) He also had seizures and it was somehow heart breaking and heart melting to hear them talk about him from the funny stories to one where hearing him late one night they rushed into his room to check if he was okay. They were wearing a hoodie and while first he was scared later, he would be relieved and laugh saying "When you came in with the hoodie, I thought it was the grim reaper." I hope when I go if people tell stories about me, they end in laughter.

I fully understand the desire to have some privacy (though not as much as say an extreme introvert since I can't completely relate to feeling the need to be alone to recharge). Wanting to share those moments and knowing that someone has a clue is probably more common than the desire for privacy. So I stand by the assertion that from birth we want to share life, be held, hold hands. That we want to know that someone, not just somewhere but that the connection with people is a desire from birth till death. Some of us are damaged enough by whatever experience where we try to do it more alone (I'm certainly an echo of that in at least regards to romance with the relationship approach I've taken until recently). But if there's anything I've learned from having a meal with the right person, friend, family or one of those relationships where you don't know where you stand, it's that the experience of life stays yummy longer when you're with the right person. The best connections make you cry sometimes but they also make you smile so big you're not sure if you're moving from double chin to triple chin territory. 

I'd put more about my counselor but some of that we will keep personal. I'll say that our last session had exchange of gifts (let's just say after we traded it showed why he was the counselor and i was the one needing guidance; his was a book; mine showed my brain was damaged). It was a handshake and a goodbye with an open door.

And let me state this clearly, I think sitting with a counselor was never once a sign of weakness though I'll concede that the fact that it's over showed that it was about that both he and I felt I didn't need as much guidance now. But it's like training; I go to running tonight where I have a customized plan on how to put one foot in front of the other. I don't quite understand the pride of not wanting to admit needing some guidance in some areas of life. People pay to be told how to more appropriately put one foot in front of the other; relationships matter a lot more. I went to counseling because I believe who I met with was smarter than me and I believe I'm walking away mentally healthier for it.

I started this with a reference to those personal ghosts. There's probably no way to eliminate those completely. But I am grateful that I  have the opportunity and the friends to where those ghosts keep getting smaller and smaller.  And the happiness that comes from good connections is like a room without a roof so they don't really have much room to haunt. 




Thursday, August 7, 2014

Grounding and Flight


I've long said I've kept running through my cancer journey because it's my therapy and how much I run and how long I run shows how bad I need therapy. However, in my sixth weekend doing Spartans which from the first one woke me up to so much more (https://www.youtube.com/watch?v=auM8kK7qblg) I think perhaps I realize I've been using the wrong word to communicate. Running isn't my therapy... It's one of the ways I've managed to stay feeling grounded... To stay connected to the beauties of life when so much has been up in the air... But even so as I've tried to get faster at running I love the (rare) pictures during road races when both feet are up in the air.


But another great way I've managed to stay grounded is because I'm fortunate to have great family. So I can't say that I've ever been more excited about Spartan than the one I would get to do with my little brother David. Speaking of therapy, at 33 years of age I've almost gotten over all the attention he stole when I was a small kid and he was born. But through some rough points of the last few years he's been rock steady but I knew it would be my turn to help him on his first race period, not just a Spartan, a race of any kind... And I couldn't help but feel grateful as we watched the sunrise on our way to the race that we both had been given the chance of being our brothers keeper.

I did the elite heat first trying to scope out the course before doing an open heat with him. Spartans are tough to not absorb the beauty... because you're sitting there taking in trees that make you want to look up and out. You may be hurting from the atlas pull but you can hear the river besides you and the birds therein. I don't know where man's desire to fly comes from but from the days of Icarus till today we've longed to do it. Not long after we invented cars we got to planes first wanting to taste the clouds... And then we were ready to fly to the moon, to dance among the stars, to know what life feels like on Jupiter and Mars. But even while birds and astronauts have to accept that much of life is spent in the nest you can't wait till the next flight. And thus I go back to Spartan races because while I rarely run on trails, I've gotten (a little) better and bolder at letting myself go on those down hills where falling feels like flying at least for a little while. This Spartan PAC northwest course was on a motorcycle/bicycle trick course. I've seen some of those stunts so it was thrilling where we got to do some of the parts on foot, some just running, others carrying heavy things, others leaping through. Maybe the image of flying bikes why the mentality of being airborne got to be what I wanted to try at the most on this course... I'd say that was my frame of mind but we know that my brain isn't great so we'll say it was my frame of heart. And while it was intimidating to sort some of the ups and downs, it turned out that wasn't a bad thing.

When I got to the hurdles obstacle, it was the first time I cleared them without landing either foot on any of the wooden part of it. When I got to the cargo net, I let myself go from pretty near the top after clearing it. When I got to the balance beam wall, since the rule is just to hit the bell without leaving the blocks, I left the furthest I ever have from the wall, and jumping gave it a flying ring. I threw the sandbag off my shoulder after that obstacle. I am a kid known for spatial orientation issues so sometimes I go the wrong direction... It's its own obstacle for me at Spartans. I did that for a brieft second and almost went to the barbed wire too early but someone pointed me back to the slide obstacle. This was an obstacle where you just went down a slide that was at least 300 years long and flew through the air for a few days to land in a mud puddle (did I communicate my issue with heights there effectively). The volunteer said if you slide sitting down you'll not go as far and you'll be able to see it coming. Let's just say I sat back and didn't open my eyes... Till I was chest deep in mud and my spibelt had gone from my waist to my chest.

But not long after that flight, the old adage of what goes up must come down was reversed.  I'm not complaining... If there's anything I've come to appreciate during Spartans and life itself,there are times when turning things sideways or backwards may feel like the wrong direction but it can make sense in its own way. But what went down had to come back up with the obstacle that I've never done cleanly, the barbed wire. Except this time it wasn't just across the ground it was going up a hill at angle... Got it done but not exactly cleanly unless you decide to call it clean cut and that's not my idea of being shaved well... The first cut was the deepest but the rest still flipping hurt. Still I was proud to get to the top not too gashed...

That was near the finish but the obstacle I am about 50/50 on was the spear throw. It hit the hay but it didn't stay so that doesn't count ... But even there as I was taking in my 30 burpee penalty, I couldn't help but think this is why Spartans love burpees... Because to do it correctly you have to both have your feet in the air and quickly come back down and get your chest to the ground... There is something to this ground and flight idea.

I finished the course and went looking for my brother. He let me catch my breath and then we were onto the 10 Am heat. ( I'd finished about 8:30. If anyone questions how bad ass some the women are out there let me point out the women's heat starts an hour later and the women's second place winner Amelia Boone who'd come in a little earlier 9:30 would also start with her sister at 10 AM). My brother is not a runner so we went at a different pace than I had on my own. Like I had on my first Spartan when a friend joined me, my brother when seeing how overwhelming Spartans can be said "go at your own pace". Like that good friend Alex that led me, there was no chance of that happening and we did it together. He got a deeper end of the gene pool in upper body strength and that was demonstrated over and over on strength based obstacles. Perhaps the best quip of the day was when he owned me on the ball and chain and it was pointed out that he handles that better is why he's the one happily married.

He took his own flying seriously taking my guidance that the mud pits and hills were easier if you jumped in as far as you could into the water rather than climb into the mud from pit to pit. He was less afraid of flying on the slides and flew further. I had never done the course in an open heat before but some of the obstacles were tougher because there was lots more mud. Let's just say that uphill barbed wire crawl after the ground had more wear, well on the second try it also gave my body more tear.

Speaking of that, when we were at the rope climb we started together but only I got to the top though more sloppily the second time. He was doing his burpees when I came down. There on course side watching a spartan race for the first time was my mother and Kiana. I've only stopped to hug anyone twice during a race in my life... The first time was at the Boston marathon where on the East coast I'd stopped to hug my mom, brother and daughter (http://pickingupahitchhiker.blogspot.com/2012/04/best-of-times-worst-of-times.html). It definitely felt like an upgrade to be doing it while sharing the course with my brother. While Kiana may have given me the softest hug and kiss she ever has because of all the mud on my face, my mom hugged me with conviction. I hugged her back with the same.

Like my mom has done with too many of my messes I think that hug cleaned up my hands and so the second time doing the spear throw, I nailed it. Mt brother did it too right by my side. He missed his and went on to his 3rd set if burpees; I tried to comfort him by saying the three obstacles he'd missed were ones I'd also missed on my first spartan. I'm not sure he heard that in the middle of burpees but I hope he remembers that I was doing each one of them by his side.

Still he got the last obstacle done, we jumped over the fire and finished. I've gotten medals from many cool people and given some to many more... But at this finish line, David and I had our parents, our kids, his wife and they were the ones who framed our hearts with love and our necks with medals... Reminding us that the reason we our able to be grounded and take flight ain't no thing but a family thing.

The unpredictability of Spartans in distance, terrain, obstacles remind me and comfort in acknowledging life's too short to pretend like it's always clean. If you sign up for some of the messy things, it makes the ones you don't sign up for easier and helps you embrace the right people in both circumstances. The families out there showed there's different ways. Amelia and I did it with our siblings first at our own pace and then at theirs. Matt Nokavich, the men's 2nd place winner, did it with his wife and 14 year old son (who holds the Boy Scout record for most pulls ups, 60!). While that family each did it at their own pace it was clear they were doing it together. The Unbreakable Jones, a father son team, were out there who did the course 7 times together in one day, once literally tied at the wrists. Amanda Sullivan, a "disabled" athlete who does some obstacles with her crutches, she was out there doing it with friends who were clearly her family. Stephen Sinek,better known as the painted Warrior whose wife spends hour making his body into a work of art. I noticed her catching him with the art of photography and the one he does with the obstacles all over the course.

Still despite all the adult athletics, I think my favorite sport is still being Kiana's dad. Not long after our finish it was time for the kids Spartan. Watching her and Jaden my brother's son do the kids spartan was my favorite part of the day. Kiana liked the course enough to where she did two miles worth of repeats on it... And when asked what her favorite part was...the obstacles. She particularly got muddy because the kids race director had said whoever splashed the most mud won that obstacle.

When Jaden and Kiana finished David and I medaled and hugged them. Then they hugged grandmothers. My parenting philosophy is first you gotta give kids roots than you gotta give them wings. As I watched Kiana hugging my mother, and her cousin after finished and as I hugged my brother I realized where we had gotten it and hoping, no ,believing we were passing on both the roots and the wings. And while each one has been great this was my favorite Spartan yet because at the start, middle and after I felt so firmly grounded and so free to take flight.

Thursday, July 31, 2014

Some Nights

I am a little while from my next trip and race, headed to the West Coast in a few minutes to fly to Portland to see my little brother David. We'll be filming once again for NBC sports for the Washington Spartan race. I still am amazed at the fact that cameras talk to me because of hanging out with my kid for a marathon (okay it helps that I won it). But Kiana will be doing the Spartan kids version and my little brother will be doing his first spartan and his first race in quite a while (I'll be doing the elite heat and then doing it again next to him, though I assure you we will do all the obstacles on our own and the running next to each other. My first spartan I had someone next to me and all they provided was mental help (http://liveepicbeepic.com/texas-spartan-race-with-iram-leon). I hope to be the same for my brother. 

I've sat here and thought of some of the things to say for the interview. It's usually answering questions but I often get to say a couple of things at the end. But it won't be about cancer even though I think cancer sucks. (In fact I'm involved in two fundraisers for it right now and if you want to donate as a gift for my upcoming 34th birthday you'll be my  hero, one is for Livestrong https://www.crowdrise.com/EpicStrongChoosesJoy and the other is for brain cancer research http://bp5k.kintera.org/faf/donorReg/donorPledge.asp?ievent=1101528&supid=356919075). But the reason it sucks is because it gets in way of life. And I go to church and am trying to get a couple of friends to join. But even as my counselor and I are "breaking up" or as one rather cute girl felt the need to mention, we are consciously uncoupling with only one more session left the week of August 10th, I think cancer sucks for the same reason "sin" does. Because it gets in the way of life. And by life in case this blog hasn't been abundantly clear and redundant is those connections you make that somehow are so much better in person but that we've invented photos, blogs, twitter and facebook to try to replicate.

There are times I've been encouraged, critiqued, (if you're a communications expert feel free to insert your word here to correct the guy with aphasia) for not delivering a more potent anti cancer, or pro Jesus or pro health care thing, or more exercise things though I believe I've done that to a responsible agree with that fundraising and with the videos etc. But the biggest message of my life, what the guy with the bad memory hopes to remember forever, is that connection you get, in a good conversation in sharing moments with meaningful people. Sometimes it's not just about a race, it's over a snow cone or under stars or things that aren't much more sophisticated than when someone tickled you. Look I'm a guy who likes to race, go fast and often win but sometimes it's about learning to slow down with them as you cross some bridges in life because like people have slowed down to speed me up in races and vice versa... there's something unsurpassable.

I've been working on my playlist for the Spartan race (these are a little different than road races so I play it on shuffle since like life I don't know what's coming on the course; there's another great song on there as I question whether George Clooniness or the new path is the better way for me but maybe that one's best left on the table for a bit). Oddly enough a couple of the songs that made the "Guy with a stroller wins a marathon"  were from Fun but there was a song of theirs I had not paid attention to that is on this playlist. It's "Some Nights." As I get ready for this interview and prepare a speech for a marathon three weeks after http://www.pocatellomarathon.com/index.php?page=pasta-bar

Some nights I stay up cashing in my bad luck
Some nights I call it a draw
Some nights I wish that my lips could build a castle
Some nights I wish they'd just fall off


But I still wake up, I still see your ghost
Oh, Lord, I'm still not sure what I stand for, oh
What do I stand for? What do I stand for?
Most nights I don't know anymore...


And trust me, I'm insecure/confused enough to wonder if when given literally chances to talk to strangers and share something  
if I'm delivering anywhere near the right message... Most nights I don't know. But when I get to hang out with my little girl or my little brother and his little boy. When I get to realize that this weekend, the three people who were there at the Boston marathon, the one I'd put off brain surgery to qualify for, and at medical appointments, my little brother, my daughter and my mother, that after this weekend, assuming it all goes well, that I will have done a race next to every person of some sort... then I dare to dream that will be some night I'll sleep with a little more rest from the exhaustion and a little more peace from the gratefulness. They all came out to Boston for me and I'll now have gotten to do a race with them in their hometown... so Bon Jovi maybe right, who says you can't go home. 

With next to no cultural sensitivity, when my little brother was born with his almond shaped eyes and we nicknamed him Chino. He embraced it and it would have to take someone really cool for me to ever get a tattoo again and maybe we'd get matching ones but maybe the right one would be the Chinese characters for faith hope and love. I know that the first person to write those said the greatest of those was love but they're all pretty great to me. 

So some nights... I wonder how all this happened... most nights I don't know. But I think the next few nights as I hang out with my brother and mother and spartans... faith, hope and love will remind me why and it'll know. So for the next few nights... yeah there's a race but this will be the longest trip I've taken since Boston with and for family. That'll make for some good days and nights. 




Thursday, July 17, 2014

If It Ain't Broke

There are some people who view my cancer appointments differently than I do. They are, at both some level logically and emotionally, more stable than I am. I've met cancer patients who just assume it's a regular check up but those are generally ones whose cancer treatment is about whether or not something has returned or metastasized, not whether or not something is stable. I've never been afraid of judgement so if me being stressed for a few days and working out extra hard or being atypically emotional is that bad... well, have at it. So in simple frankness, I do stress when they are coming up.

I went in to see the neurooncologist and just sat quietly in the lobby... well, I did a few things before that. I love photography and jokes but while all levels of them will make you smile or emotional, there are photographers who even when they look at their pictures the depth they have is what they try to capture, worth a lot more than a thousand words and that's often what looking at an MRI feels like. I let my imagination wonder to how much the "pictures" of my brain really capture my mind? I always take home a CD and look at it like I have some clue how to read it... I wonder since I've got them all if there is anyway to make a greatest hits album. For the first time ever during an MRI, I actually hit the panic button in between the contrast and no contrast session. I wasn't panicked but I felt like I was going to vomit after they injected the medal dye and figured they wouldn't be a fan of that in their machine. Different explanations were thrown out about my the medal contrast went in too fast or what have you... I didn't worry about the cause, just let it subside and we get the MRI done. There has been exactly one MRI I didn't vomit after and let's just say that the number did not double.

So, I'm not sure quite why things have gotten more and more stable for the last year and a half but in trying to keep with the pattern of previous medical appointments, I did the same thing I've done before the last few. I met with my counselor/minister and we had breakfast and prayed. Never before nor at this one have I prayed to beat cancer... I figured if there's a guy who runs the universe he can decide what he wants to do on that... I just asked that I do the best I could with whatever news came.

I also rode my bike to the doctors sinceI'm not superstitious but I am a little bit stitious. Actually, no I am not stitious at all but I do know that many of the ways we try to capture the universe are less than adequate. But there have been zero appointments that I've gone to on a bike that we've gotten bad news so I just kind of decided if it ain't broke, don't fix it and rode there in the Texas summer hoping that if the pattern of behavior got me here, well let's keep it going hoping for the same results. No such thing as false hope right?

The doctor has a new assistant (the old girl was a lot cuter and more clear spoken than than this new guy; guess which one of the two I'll remember better). A few friends lately have asked if I've lost weight (I think my spartan working out might be tricking them cause of my new massive biceps j/k) but the scale at the doctors office said I had not lost weight. In those type of circumstance, there are times you just have to trust your friends over a scale ;-).  At every doctor's appointments I read through whatever they print out or hand me. In previous ones with blood work, I'd noticed that I have no new std's (nor any old ones in case anyone was wondering). I asked why we were testing my blood for that and it turns out that a couple of STD's will break the brain/blood barrier and so if anything shows up in the MRI they want to know that it's cancer and not anything else. But it's kind of amusing to be tested for STD's. And while I certainly should be in no hurry to get engaged even if I've finally opened up my mind to being open to a relationship for the first time in years, I was rather amused that at this doctor's report the MRI report showed that I had no possibility of being pregnant. While that was obviously disappointing, I comforted myself by saying I've got a cute kid already anyway and maybe if I don't get pregnant eventually I'll just have to adopt.

Anyway, he showed me the MRI... On the side where the surgery occurred since it could only be "attacked from one side" without destroy language and memory functions, Dr. Vaillant said the tumor and scar tissue were no longer distinguishable which apparently is a good thing. I used to go to Duke before we had a neuro oncologist in town and one of the many remarkable things about Duke is that they had a brain MRI almost a decade before anyone else. I thought that was a bit of an exaggeration till this appointment where a secure log in for electronic records was being used since I first started this journey with them almost 4 years ago. Duke had it in place then and I don't know how long it had been true at that point but anyway, if this blog shows anything, whether records are kept electronically or in paper is only relevant in how you can access them. Maybe it's why some of those meaningful things in my life have to be emailed but others I decide are worthy of being hand written or pictures that should be printed out.

It was stable and I told him about the problems with pharmacy issues (for a drug I've been on since October) I am now on the 3rd pharmacy. Costco never had any problems with it but when I got new insurance, it wasn't covered by Costco. Out of the options, I switched to CVS because they had taken the stance they were no longer going to sell tobacco products at a pharmacy; a noble stance in my book. However, while there were never any serious issues customer service wise, they just stated they couldn't seem to find that drug and the pharmacist suggested that I move to another drug. I moved to HEB finally and the pharmacist there also acknowledged a new drug was easier to get. Still, there are many reasons I love my neuro oncologist. He's a runner, he wears bow ties, he's practical but as I talked to him about the suggestions from the pharmacists for moving to a new drug... he said that he thought there was a way to keep refilling it through the hospital itself and since we finally found a way that had stopped the seizures, it'd be better to continue with it because if it ain't broke... don't fix it. Unlike cancer, he keeps growing on me. And unlike any cancer growth, it's a good thing.

Then he said probably the most pleasantly surprising thing any doctor has ever said... we don't have any appointments, MRI's anything until 2015! In 2010 when this all started, I had a hospital stay and more appointments in 2 months than I had in my entire adult life combined and those were all for sports injuries. In 2011, it was 12 for 12. In 2012, it was 10 out of 12. In 2013, it was 7 out of 12. And in 2014, assuming, dreaming that there will be no more seizures or anything unexpected, there will be five appointments that all occurred in April and July. So for the first time since 2009, looking down the road starts to feel a little less crowded with doctors and I'll see them more at projects we're working on for cancer patients than I will for medical reasons... And that just feels crazy. I like the song "I want crazy" but it turns out this is the kind of crazy I want where normal feels like crazy.

Someone wanted me to go out and get a drink with them (I did not but they were nice enough to go out and have one for me; it's like my batchelor party once upon a time where a couple of friends were nice enough to go to a strip club for me without me). I let this medical news sink in for a while but I biked and took a nap. Then I went on a walk and sat under a bridge thinking, absorbing the thoughts and experiences of the greatest gifts of the universe (being under a bridge is safe from murderers right?). I certainly reflected on some of the mistakes I've made, some from rushing into things or not doing them properly, some from not being open to the possibilities, some from letting too much of the past or potential future conflict with the present. Who knows what's coming but the future but my dream for 2014 was that it would be more predictable then the last few years has been and I am waking up to that dream more and more. There are certainly things in my life that I've allowed to stay broken too long that I'm finally working on.There are parts of my heart that are broken but I think it's possible to love with all the pieces. There are parts of my brain that both the appointment in April and yesterday show haven't improved and are broken but holding.

 But afterwards I went and ran on the track... And I ran with conviction. Then I had a good meal and a good nights sleep with some good dreams. Because if it ain't broke, don't fix it.













Monday, July 14, 2014

Make Him Work For It in the Pursuit of Happiness


Every once in a while I get to do interview or  speeches or guest blogs  http://brainpower5k.blogspot.com/2014/07/iram-j-leon-survivor-story-on-bp5k.html) ... there I try to clean up the story some because I get the privilege of stepping back... of getting, giving, contemplating perspective  (and also because it's going to be complete strangers reading/hearing it as opposed to you, my friends, cause only my friends read this right? ;-). But here where we pick up hitchhikers,  this is just train of thought and a cursory reading of it will tell you that I've made mistakes, grammar emotional and otherwise in pouring my heart out to a blog... so maybe there were plenty of reasons why the George Clooney approach was moderately successful (or the most massive failure of my life depending on your perspective but I was amused that there's a picture of Clooney in a government museum in DC) because that intensity when dealing with someone should be done proportionally, properly paced remembering that a good relationship is more like a marathon and less like a track workout. And while marathons are hard, I also hear I won a marathon pushing a stroller once I... so...

While I still am blown away by the privileges, the opportunities  that came from that. The shirt that I wear during Spartans, the make him work for it shirts (makehimwork.com), the founder, David Landau was kind enough to get Kiana and I out to his home in Washington DC. I'm not going to get much into politics because I voted for Pedro (honestly because I think that both parties have some very valid points and some incredibly dumb ones but because it's such a divisional system with only two choices, it gets tough to be productive. I'm a guy with problems with gray matter and while some of the world is black and white I'm a bigger fan of the
rainbow, those moments where you stand in a museum with multiple colors flooding in light through various windows, even when you turn around for sunsets and catch that even lights that are fading create a beauty if reflected right.

Still, when in DC this weekend, we did a tour on a bus-turns-boat tour where we got to see the big monuments Kiana and saw some of the great museums. When you ask her to describe her favorite moments, she talks about some of the historical monuments but she also talks about the butterfly garden. And I loved the historical stuff, some of which I'd never seen before but I also enjoyed the 12 mile run along the Potomac. And perhaps what made my day just as much was that Kiana was smiling when we got on the plane home somewhere comparable to on the way there, where she realized home and trips were both worthy of excitement. We had moments there where strangers became friends and where one of the friends I've made through brain cancer at Duke and his family came out to have a meal with us.

Cancer and it's side effects differ for different people. I've seen two people I love whose treatment ended earlier than they thought and figured out or are trying to what to do in light of that. For me, the MRI because someone made a typo they wanted to delay my MRI today. Frankly, the sitting in suspense and having things on your calendar messes with you enough to where that's uncomfortable but that's a fairly  petty reason to be upset. The MRI was scheduled for today (mostly) because Kiana leaves to be with her mom for an extended summer visit. It is possible/likely that we may be tweaking the anti seizure medication either way. And of course if something shows on the MRI cause I have such a great track record of how I get emotionally detached during medical times, or if I have something to deal with the medication, I thought a 7 year old would be best having fun elsewhere. The time at which the MRI was to make it possible for someone to be there and in my best dreams they will show up in one form or another but either way...

Let's just say when they tried to delay it... well I showed up at their office and sat and waited and waited while they made phone calls and they tried to track down their mistake and asked why I wouldn't just be patient and have it happen another day. I said that today Kiana leaves for a couple of weeks and anyway, the MRI is happening today as scheduled even if they interrupted my days regularly scheduled programming to make it happen.

So whatever will show on the MRI has already been determined... like a good or bad photographer... this is just documenting it. But tonight sitting in suspense, I should go watch a movie or something to distract myself... maybe that new Jersey Boys one to remind myself that my life is just too good to be true or that Planet of the Apes ones to let out my inner monkey. Or maybe go do a track workout where I keep making him work for it. Either way now, lunch is done, the MRI is in a few hours, and whatever happens today and tomorrow I hope to keep giving it what I have to make him work for it in the pursuit of happiness.



















Wednesday, July 9, 2014

Relearning to Live

Any event that heavily disrupts a normal life jolts us... there are those who seem jolted by someone not turning fast enough after a light turns green, those who it seems it takes near death to budge them. But the last couple of months, I can honestly say I've just been waking up to a few parts of life.

Self image is an interesting thing...  most of us have the communication capacity to realize that the image we present to ourselves both to others and ourselves isn't always (ever) quite accurate. We digitize it when we look at our phone and our cameras and realize that the picture we were trying to capture it makes us smile even bigger than the selfie we caught or makes us look down in a bit of frustration that the thousand words that particular picture is worth aren't ones you should probably say out loud. 

A few entries ago when I wrote from dream to dream, I talked about how Kiana went back to bed to "finish a dream." But if there's anywhere God's been kind enough to give me wisdom and over it's through the eyes of what has to be His child because a few days ago, she said I was dreaming this and then I woke up and then this is how the story finished. And I loved that she recognized you could wake up and finish your dreams. There are many things the Universe has been kind enough to give us, cool summer nights where it's somehow just right to take in the stars, sunflowers, bluebonnets that against a green background and a blue sky make you realize that life doesn't have to be idealized to be appreciated. But whether or not the universe has a capacity to make choices for you, it still give us that free will to live with a great level of choice.

I am realizing that in some ways I'm just waking up from a long, long hiatus. Freud talked about regression when trauma comes up. You will meet no one from my entire academic career (despite the fact that I was in track and in cross country) that remembers me as a runner. Now there are many times where I get introduced as a marathon runner etc (in all profiles where I'm mentioned in the program I have had removed marathon to just runner because well I like plenty of distances). But the fact that I relearned the love of running and of hanging out with a small child was somehow both regression and progression. But there were some things I definitely suspended, quit trying on or believed were completely gone. Some of those are and always will be but to think that because several things are lost that none of them can ever be replaced wasn't my wisest emotional choice.

I've talked in speeches and on videos and on here about the big  cancer stories I've come in contact with. Those seem to get more attention, fair enough. But I've also talked about the little ones and those still keep moving me. I still continue to meet the girl who is gorgeous in every way who has a hard time seeing that because her self image still hasn't quite woken up from being the bald girl in the wheelchair. There's the guy who takes a chemo bag attached into work for a few months and then when he stops taking it in panics that he forgot it then remembers that it's done. There's the older guy whose cancer is slowing down but not enough so they are going to start a new regiment and so he starts making tapes to his daughter about some stories about his life that she barely knows. There are people who are so intent at their jobs, hobbies, passion that what drives them is the ability to get back to them and there are those who it makes them question many things if not everything and then shift accordingly. For some it's a short lived thing not much different than a fad diet where they lose the weight for a few months. For some that shift is permanent, training with more conviction for a spartan has me in the best over all shape in my life. Meeting these people, writing this blog, meeting with a counselor and praying, here's hoping that's true there too. 

Perhaps one of the reasons I'm starting to finally wake up is because they let me start driving again. I've biked everywhere I needed to go on my own to feel some level of independence. But anytime Kiana needed to go somewhere or when there was a race, I got a ride. People presume it was not that big of a deal because people carpool or ride the bus all the time and of course they're right but that self image of hey I'm going to be a contender in this race but can I get you to take me there. It's not even been three months yet but I finally sped and parallel parked all in one weekend and it was a cool little feeling (I mean speeding is bad, dont' ever ever do it). And perhaps it's because for the first time in almost 4 years assuming that the MRI and medical appointment go well... and I don't make that assumption but I am trying to take a lesson from Kiana and as I'm waking up from a dream, trying to write my own ending. But assuming it all goes well, for the first time since this started, I will have more months without a  brain cancer appointment then with one. And as I'm waking up to driving and each day getting less nervous, I need to balance remembering the daily "don't wake up in an ambulance" pills which make me think that today might be the last day and planning for tomorrow. And continuing to love the people I love to the moon and back but also if I ever manage to find someone to ask to see them on some tomorrow and maybe there will be a tomorrow where they let you borrow their heart.

So as I've talked about people who had to relearn to walk or talk, people who have had to make adjustments to learn to breathe in a more helpful way, to step away to feel bad for a little bit and find a bathroom, the ones who inspire me are the ones who did so and continue to do so. There are days I'm exhausted enough and other cancer patients are too where during a medical test, you have to be honest and acknowledge that on that day, you'd be relived whether the results came in as looking better or worse. As I've had to relearn that the side effects that I've accepted as normal of shifted sleep patterns and vomiting, a shifted sense of time due to memory issues, some spatial orientation issues (it's interesting to me that some people noticed this stuff shortly after meeting me but don't get around to telling me that till two years later because they think it would make me feel awkward). Still, for many of us the side effects of cancer affect the way we view how we see our life and ourselves on the emotional level as much on the physical one.

There is a video, posters and once upon a time internet banner that said, I was afraid the way I handled cancer meant I pushed someone I loved away... I've been on no fad diet to shift but I think the work I've been doing on that has finally woken me up to relearn to live, love and dream in ways I'd hidden from even myself. Here's hoping and trusting that's the exact same attitude I walk out of the neuro oncological appointment with next week. 

Sunday, July 6, 2014

Here in the Unknown

Anyone whose read this blog for too long knows that the entries get to be a bit more frequent and sometimes much longer  when the medical stuff is coming up... especially the MRI's... so be forewarned as you read this entry. Somehow I am the guy who lives with dizziness and will still roll under barbed wire for a race... I am the guy who puts off brain surgery to run a marathon, who wins one pushing a stroller, who wakes up in ambulances and runs 48 hours later... And because I happen to be fast it makes for good headlines... but as I've said all along, running is my therapy and how much I run and how often I run tells you how bad I need therapy, in case that's not obvious let's just say that on both days this weekend I ran more than my scheduled called for on two long runs. And while there are times all of us post on facebook because it's how we attune to our friends and/or feed our ego by the fact that getting some likes is  few seconds worth of social reward, it may tell you something that my cover photos recently have changed to pictures of me and Kiana or things about hope for no other reason than subtle reminders to remind myself to breathe.

I wish I could tell you I've mastered this medical appointment stuff. I'm not quite sure why there's this impression that I handle cancer greatly when I get like this around medical appointments but I am proud/relieved/happy to say that each time the stress before takes longer to set in and that the hope is greater ... That's progress isn't it?And sometimes that's the only measurement in life right, is progress (is that progress of growing hope or just accepting a disruptive machine that's checking whether or not something in your brain is growing as far too normal? I know I'm known for few victories (the only race I have all of July was today's annual church pie eating contest and I took first place and at some level the discomfort since then is on par with some of athletic victories) but when I used to be a probation officer I said sometimes the way we measure progress is that some of these kids grow up to be misdemeanor criminals instead of felons. Or as a great preacher Tony Campolo once talked about how he became friends with someone who was picked on a lot for being a "skinny wimp and then said, "yes I know people want to hear and I loved that wimp, and nurtured that wimp and today, today he is president of the United States" but the story was nothing more, which may be the greatest thing ever, but that "we became friends and had some great childhood memories together." I've not mastered my fears before medical appointments, just gotten better at them...

And on the dating scene or being open to romance that I've ignored for so long, I've just began to be open to improving. The first girl I've asked for their number, the first girl who I was honestly pursuing... the first girl who I would love to be taking to an MRI as a girlfriend... I think in the end the story will be as simple and as complex as that I scared her away with too much intensity too fast (the fact that the timing was around the MRI was unfortunate at best). Call that rust from not having really given dating a fair chance since i was 17 (cause we were all so good at it then), call it as one friend who put it slightly more bluntly than I will on here that they forget that despite the fact that I have other experiences with the George Clooney girls you can't really call that dating. I'm not an idealist even as I get from hopeless romantic to hopeful romantic stage but let's all be realistic that your chances of succeeding with someone you're dating are statistically a lot lower than my chances of beating brain cancer. But when you connect with someone the moment you meet them... well maybe it feels to good to be true and the awareness of that and the hope of that are both a thrilling and a tough roller coaster to ride. 

But I took the George Clooney bet that I'd never get married or have kids again not because of bitterness or hurt from my marriage collapsing to an affair during brain cancer (okay okay, not only because of that) but out of some 'obligation' that no one should ever have to sign up for this. As I've spent the last few months thinking about it, the idea of a real relationship was more realistic because at least the adult had a choice in the matter. But the idea of children I was truly closed off to because that person wouldn't have a choice in the matter. Livestrong has a strong fertility preservation program but I've wondered whether being open to the idea of having kids after/with cancer wasn't incredibly irresponsible or just a way to pass on life. My cancer has no known genetic factors but it's also not clearly going to be gone while our technology remains the same (people ask if this is a routine MRI. I don't know what a routine MRI is since We do them so often and if there's growth we'll talk about possible treatments and if there's not we'll just schedule the next one... I think people forget that they never took the tumor all the way out. They just reduced it and the doctors said then and all statistical data said, it was a waiting game and that odds were I wouldn't make 40. The median survival rate for this thing is 4 years without surgery, 7 with. I'm closer to the 4 year mark but obviously the outliers are all over the place). Still, I suppose if there's anyone who ever gives me the idea, the hope that the rest of our live could be shared... if they want to have kids, it should definitely not be a deal breaker right at the start. I imagine if there's anyone I could imaging living and dying to, even if it doesn't happen, the chemistry would be there to where I'd understand that line that you can see your unborn children in her eyes. Anyway, I worked at a nursing home in high school which had the worst logo ever, "when love just isn't enough." Maybe that's true but if i get a choice into what life philosophy to take from here forward it'll be what I wrote into a wedding book I attended recently, "Love conquers all."I don't know if I'll ever lose the George Clooney bet, I rarely lose bets but if I do, there will be no one who ever smiles while they are paying out a loss as much as I will. And while everyone has deal breakers in what relationships they want to pursue, for the time being, I've decided only two matter. They obviously need to get along with Kiana since those wicked stepmother stories are so horrible and they better be able to dance cause who wants to spend life with someone who can't dance ;). 

So the guy afraid of getting commitment is trying to get better. While I may be too little too late to get a successful yes on getting a girlfriend to an MRI, I choose to be grateful that they nursed your communication skills to addressing things that you wouldn't even say to yourself. And I don't know how the MRI or being open to romance will go. But one of the lines that got quoted a few times in the marathon media blitz was if everything goes right and all I did was hang out with my kid or if everything goes wrong and I all I did was hang out with my kid, to me that's a win/win. So for the journey that I've had in many areas, other than places where I owe apologies I have tried to deliver. But if the MRI comes out with scarier results or with the status quote,  well, let me quote Leonard Cohen, 

I did my best, it wasn't much
I couldn't feel, so I tried to touch
I've told the truth, I didn't come to fool you
And even though it all went wrong
I'll stand before the Lord of Song
With nothing on my tongue but Hallelujah


So I'm going to go to bed soon and then having a fun day with Kiana tomorrow and trying to sleep calmly. And trying to accept that the fear of the unknown is a poor way to tune in because the future is always unknown and always what's coming. And so here in the unknown, I choose to try to keep daring to dream that hope, faith, and love, the things the Universe has been kind enough to let me have some great experiences with, will keep being the known.