Thursday, April 23, 2015

Icebergs and Penguins

There is an analogy I heard recently about how our brains are like icebergs and penguins... The brain is the iceberg and penguins are the things that occupy it. If you have too many some things are bound to be bumped off. If some penguins are bigger than others than there is room for a totality of less of them. The good days are the ones where there's a few less and the weather is more reasonable your penguins can be happy as they work and play with some smooth sliding. It was a fascinating little analogy. While some people have bigger or more capable icebergs, there are none of us who have infinite ones.

A few days ago, the cancer death that has messed with me the most ever happened. When this all started for me in 2010, I had had zero, ZERO friends and family who had ever had cancer. Then I woke up in an ambulance and found out that it was something that had no known genetic, dietary, lifestyle or environmental components and much too low of a survival rate, a very sad way to think of a losing lottery ticket. I have chosen to become involved in the cancer community since then in general and very specifically in the brain cancer world. My own aunt passed away since then from breast cancer and I've seen far too many friends I've made since then go far too soon. The ones that outlive the typical prognosis even by a year or two have called themselves the lucky ones, an interesting self concept.

If I am to be blatantly honest, something I am known for, I've not been entirely exempt from letting thoughts slip into inappropriate places when someone passes from cancer in trying to relieve my own fears... I think well they'd been a smoker their whole life or they drank all the time or it took a simple glance at them to tell their weight was less than ideal. They don't really work out or eat anything other than junk food. Even those who have the same type of cancer (of which I've personally met zero people so far who have beaten the average prognosis) you want to try to believe you're doing things better in the fact that I work out more, make better smoothies, love my kids more. While I bet on the odds and have lived accordingly, somewhere I've let glimmers of hope believe that something would be special.

I've been on the other end of this when people try to make sense of a guy who looks like me and runs like me wakes up in an ambulance in the middle of a restaurant or a run because of brain cancer. A friend who also runs marathons once asked which ear I held my cell phone to since my tumor was on the left side of my brain... another friend asked about my stay in the Marshall Islands where the US tested the atom bomb; something had to be a clear explanation of a guy who'd never called in sick and was athletic having cancer. The human brain wants to believe that if all facts were known, everything is a linear clean cause and effect A+B always equals C. My experience is that's the pattern but there are times when life is incredibly random sometimes in very bad ways like only having missed school in 12 years for the chicken pox and still 4.5 years later all bills from brain cancer not settled yet. Sometimes in very good things where you realize that at least you're still standing, that you won a marathon and there's a moment where someone says "I'm a hugger" before a medical appointment and in their arms despite a great resting heart rate you find it relaxing even more and remembering what it was like to breathe.

But then there are days where the reality of randomness, the chaos of cancer, the absurdness of life being affected by it... they hit hard enough to knock the wind out of you. The night before the Boston marathon I got news about Brian Conley. I've mentioned him many times in here but we met at Duke running a a race that raised money for the Brain Cancer Center and it was the only time that the Angels Among Us 5k had 1st and 2nd place be patients (may it be clear that at 40 years old he owned me despite that being my fastest 5k at the time; he owned me by so much that his father yelled at ESPN that they were filming the wrong guy). If the annoyingness of ESPN's scheduling and rescheduling had frustrated me, and even if they never air a piece about me, they completely won me over when they edited and sent a video of where they caught us interacting in that race and during ultimate the next day.

We would become friends over that weekend, playing ultimate, running together and having a barbecue. We kept in touch even if neither of us was particularly touchy feely guys. We met up in DC and New York when I went out there, our kids met and played together. Him and his wife both got the Make Him Work for It Shirt and my fastest 5k, by coincidence or divine guidance I'll let you decide happened to be on a day I was wearing a jersey his friends had made the Team Conley shirt which was branded with Ironman, something he liked.

And yet two years after he owned me in a race, with the exact same doctors at Duke that I had and the same cancer I have, he's gone. He got less time from prognosis to passing despite having been in better health his entire life and working till a few months ago. He'd had a seizure while driving and come out okay. He died with his family around him, a way so many of us dream of going but certainly not with kids so young. I found out how bad he was doing and that he likely wasn't going to make it more than I was going to be in Boston the night before the race. Some people can fuel that heartbreak into anger to run faster... for me it's always just a reflection of sadness to not give up till the end. A death like that is a break in the ice that takes up too much room on my iceberg to let any penguins play happy. I don't know to direct sadness to be what wins that day and use it to run fast. It's sadness that makes me say there's never coming a day where the legs work that I don't keep racing to try fight for both cancer research and cancer in the here and now. I tried to connect them with the counselors that Kiana used and I hope it's helpful.

He continued being a coach, a husband, a father, a friend... holding on with all he had to all he had as best as he could and the guy was in better shape than me so he could hold more with more conviction. In the end he spent much of it awake and I dare believe doing exactly what his family perceived, despite no ability to take much nutrition in, he was taking them in as best as he could and sending out affection. If from this much distance I feel those much loss from the ripple effect, those closer feel it much worse but I hope that's also true of the thankfulness for the connection which even his parents who knew him from birth recognize that it's much too short.

A picture of he and I has sat on my fridge for a long time both as a memory and as reminder of the delicateness of the situation, the beauty and delicateness of cancer connections and a reminder of the life and death cycle. The family from early on raised money for Brain Cancer research and perhaps in one of those ways that shows the universe is sometimes kind enough to repay kindness there has been a nice obituary and a fund set up for his kids. In the end, he and I had some similar stories of being decent runners with sometimes and a rare cancer that there's no way to not have some anger and sadness about. He kept trying to do what mattered with him and to his family even as he fought cancer personally and at a bigger level. We were hanging out at a museum in New York once and as we watched our kids do something together at the Museum of Natural History, he said I'm glad we're doing something that's all about the kids together. We all have different icebergs and different penguins but even in the unexpected cold that came by too fast, I am heartbroken by the loss but thankful for the opportunity that there was somedays where we lined up our penguins to slide and have some fun adventures together.

Wednesday, April 22, 2015

More Than A Feeling

I'm a guy with known memory and language deficits but there are weekends like the one filled with the Boston marathon that there just are not adequate words even while they are completely unforgettable. To return there three years from the first time I qualified and to see the enthusiasm, the excitement the energy of that place was somehow both easier and harder to take in the second time around, certainly far more appreciated.

The day before was perfect outside weather where I took in an orchard and apple donuts, a castle and a lake, I don't know if I have a sixth sense but I enjoyed the other five. I'd never had apple donuts before but if anyone is ever hunting for good will, I gotta tell you I really liked them apples. Still, pulling into this old historical down and seeing it's skyline I couldn't help but think, hello Boston my old friend, I've come to see you once again. The point of life, at least mine anyway, is people, relationships so the first stop was a meal with friends old and new.

The pre race meal was where I first got two officially meet two other brain tumor survivors who were going to be
running the marathon. The cute girl wanted to show off all her scars but she had longer hair but still wanted a way to show off our scars next to her... it should take you a second to come up with who came up with the idea that both of us kissing her cheek and showing off the scar was a win/win/win. There were friends from the world of the Austin Runner's Club, friends from Spartan, a friend from LA from over a decade ago who had now run marathons, a multiple world record holder Michael Wardian (who nudged me with the fact that he actually was the one who held the world record for a marathon with a stroller). There was one of the survivors of the Boston marathon bombing, the person who was kind enough to both make my entry possible and let me stay at her place. She also struggled with being called a survivor of happenstance, her with the bombing me with a tumor and the connections of it to a marathon. We couldn't decide which one of us more stubborn, more sarcastic but she was definitely the bettter looking one. Maybe it's happen stance, maybe it's perspective but all those people give you a level of admiration of fighting for something which somehow includes and so evasively exudes yourself. I floated around to all the tables which in those moments that the marathon revolved around getting to know these people and catching more than just a meal but knowing that I was lucky to have it. The meal ended with many hugs and with the other brain tumor survivor Tom who actually is about my speed saying that we hoped we saw each other on the course and would get to take a few strides together.

Packet pick up was special... I had to sign the wall knowing somewhere somehow I wanted to leave a little bit of
Boston since I knew I was taking so much of it with me the next day. I'm always amused at the cleverness of running jokes but in a tshirt that was very cute but not exactly my cut quoting Boston's more than a feeling made me smile the biggest.

I can't remember the last time I slept well the night before a race and this was no exception. I laid my stuff out trying to figure out what was missing but couldn't quite catch it (it was the pins for the bib which when it came time to put on I figured out). And then it was off to the race... a struggle with races like this is you get up at the same time but because of security and it being point to point, you hurry up to wait. Luckily the bus I was on was full of friends from Austin and mostly we made fun of each other with the only person who drew a bad seat was the person who was next to me. It was very very cool to have friends there who I'd known only a few months and those who were there before my first marathon ever happened in 2010. We were all in different corrals so we'd not get to start or race together but it was a touch of home before getting on the official road.

The race started with about decent but I've ran 12 marathons and know that I've had good marathon weather for zero of them. I simply tried to regulate and if you look at my first several splits up to 25k I was nailing the pace I intended, 6:46. The music was pumping, I high fived tons of people, did a bit of singing. At
mile 12 there were all the Wellsley girls offering their kisses with some incredibly creative signs like "If you think I'm a good kisser  you should meet Isabelle" and a few girls down, "I'm Isabelle."  I'd spend a bit of time the last time I was in Boston but I was 31 then and I'm 34 now so I figured it'd be creepy trying to kiss too many college girls at this age. There were some less than creative ones like "Cleavage" pointing at well... cleavage." "Is that a shot block in your pocket or are you  happy to see me." "You've got a great ass." "I use tongue." and perhaps slightly more creative "Oooh you've got stamina, call me." Probably my favorite in that section was actually a girl who you couldn't see anything besides skin of her legs, shoulder and arms. She was behind a big cardboard sign that said "if you run fast enough, I'll drop this sign." I guess I wasn't running fast enough. It's an amusing college tradition that made me both smile and make a mental note of where Kiana will not be allowed to apply in high school. 

I kept taking in signs... One I'd actually seen in preparation that I stole outright for my facebook status without giving any credit was "this is a lot of work for a free banana." There were a lot of good ones but I can't remember most of them but a  clever one I saw twice was "The patriots say it's okay to run it in right now." While I've often seen go random stranger go, this was the most I've ever gotten cheered for "Go shirtless guy." Still someone had a good spirit and a good sense of humor because they had wrapped a sign in great plastic on the kind of day that you watch TV that said, "You run marathons; I watch them on Netflix."

At mile 17, someone moving over to a water stop accidentally stepped on my shoes and I went down; nothing really critical but my shoes came untied and so I triple knotted them and got back up but it kind of messed with the mojo a little bit. It had been cold and rainy and windy and it kept getting worse. For the first time in any race, I was regretting not running with warmer gear. The humidity got to me to where I chocked back up a bit of breakfast and when a slight bit of vomit came out was near some college kids who cheered for me vomiting louder than I've ever been cheered for doing better things during  race... Didn't know what to do about that other than high five and fist bump them as they requested. They offered me a Samuel Adams beer to feel better... I passed.

At the beginning of heart break hill there were two cute girls holding signs for me and the crowd in general... that
definitely made my heart have no chance of breaking on the way up. I couldn't quite seem to hold speed for the rest of the race but kept trying from the encouragement. At the 23 mile market, a man who was wearing a sign
that said he was 60 slipped and I offered him a hand. He got up and bolted and I was wishing adrenaline was contagious. With about 2 miles to go, Tom the other brain survivor and I met up and we'd run a few strides together. About a mile to go, there were friends with Texas flags and signs for our running group and then I turned it on hoping to qualify for Boston at Boston, something I would miss by 32 seconds but my last mile was actually at the pace I started which is one if not my fastest closing mile so I'll take it. (Plus the kiss I'd planted on a really cute girl had to have taken at least that long right?) Two shipmates and I finished within seconds and we high fived. The other tumor survivor Tom and I hugged it out and while I finished ahead of him his time was actually faster at 51 and 6 years with a tumor than mine at 34 and 4 years with one and I assure you that made me smile. He said he'd never run without a shirt because hypothermia can cause a seizure (which I know) as can hyperthermia.... oddly enough the two times I've run Boston have been the hottest marathon I've ever run and the coldest one.

As I picked up my medal and my wrap around one of the volunteers said I had to go to the medical tent. I said I
felt fine but they thought I was shaking too much. They insisted and put me in a wheelchair. At the tent a few minutes later, they took my heart rate (77) and my pulse (110/86) and my body temperature (92.9).  When I was given some beef broth was when I realized how bad it was because I couldn't hold it to drink it without splashing it everywhere so a volunteer held it while I sipped it... When I answered if I had any medical history, they said I'd be staying till my temperature was better and they kept me till it was 97 degrees. As I was sitting there smiling in a medical tent where some people were struggling more obviously and I felt guilty about taking up a spot... a volunteer said why are you smiling so big in the medical tent and I said "I just finished the Boston marathon, what else would I be doing but smiling." She smiled back.

There were thoughts on the course like the 26 donors who had supported it. There were memories of that Boston was the first race that I'd ever stopped to hug someone, my mom and daughter. But 12 marathons in and 2 of them being Boston, all I can say is I'm incredibly thankful to still be going. A little later I got to the happy hour with local friends and we had beer and  happiness. While only three of the group there got their fastest marathon ever for a good chunk of the group including me, it was our fastest Boston which no matter what the weather is has an unusual difficulty of never being able to completely find your own rhythm because of the crowded narrow streets. There are zero times where immediately after I finish a marathon I wonder why I sign up for this and even less times where when we're trading stories after with friends I train with where I don't have an immediate answer. About half of the crowd there I knew last time I was in Boston and half I've met since. Like any marathon the better half to me is always the one you're currently running and I hope I still have half a lifetime left of making friends like this no matter how tough the weather or hills.  

Wednesday, April 15, 2015

Shut Up and Dance

Well the Boston marathon playlist is finally complete... it is the marathon with by far the most dance songs ever so I might be getting confused as to what I'm actually going out there to do... It's also got the most comical songs I've ever had on a playlist since I know I'll be smiling on that course but thought I'd reinforce it throughout the course... With that said, the final song I added on the playlist was Shut up and dance.  Unlike previous road races I don't have it in any order but will just be putting it on shuffle like I do on Spartans, accepting that something life being random can be a pretty good thing.

I'm honestly more excited about this marathon than any marathon in quite a while. There's been some incredibly happenstances that have made me look forward to it... the person who got the invitation to me, Megan, is someone who has connections to both the cancer community and was one of the people who had to be resilient to get through the Boston tragedy. From the tea party to the most recent response to those bombings, Boston has shown for a couple of centuries that it's not a town to be messed with or in. She's kind enough to host me during Boston. She's going to be on heartbreak hill with a sign she made that I honestly teared up when I saw it. I hope I catch it on the course itself but either way in my heart I know it's there.

Running was never how I fought cancer nor will it ever be... it was there long before cancer and it's nice to have something from Life part I that has continued to get better after it. But it is something I still try to utilize, like that music on that playlist during the race, to both focus and disconnect from difficulty; albeit the marathon is one I signed up for and cancer is not. However, I know it's a silly symbol but it made me happy that Duke, where I went for brain surgery. won March Madness and while it took some doubling down on bracket bets... I won something that really got my spirits up. I tried to teach Kiana how to slam dunk that day and she played along but mostly rolled her eyes at me.

My lumosity scores are still solid where I won the war of 1812. That was the highest LPI I'd ever achieved there and had never gotten anywhere near it till earlier this year and I've been on an upward trend to where it sits now with 1815...

And the fundraiser with First Descents, I signed up to do got 26 donors so in my heart and damaged
mind, every single mile is covered and don't you worry, that last .2 that one's for me. I've gone out and broken in the new shoes and watch that I'm going to be using. I got the special Boston shoes for it so that no matter what direction I'm looking even in my own two feet I can be reminded that once upon a time I put off brain surgery to try to qualify for Boston and I did though it would be 14 months before I could run it. It took 2.5 years later to qualify again but this time I'm doing it only 8 months later my kind of time frame. It's the habit of our running group to call the time and I honestly usually call a shot, often an over ambitious one and only once have I even been close. Still, I was the last one to call it and despite the jokes someone made on the worksheet about how the cameras would slow me down it's just the nervousness of starting later, it being more crowded I finally called one of 2:58.08 mostly cause that would have more 8's. That's the most ambitious goal because it would beat my fastest marathon by over five. The next goal is to get a PR which would be anything with a 3:03. And as I've stated before I really really hope to be able to say I qualified for Boston at Boston which would be anything that's 3:09 or under... (If you're one of those tracker stalker types my bib number is 5629) Predicting your time exactly right is not a science since there's too many factors but I gotta say that I'm actually fairly certain that no matter what this will be the most fun I've had for 26.2 miles because this is the relaxed I've been a few days before a marathon for a while. (Not to say that I'm relaxed just more relaxed and more excited and more grateful the second time around)

There will be meals and hugs and moments with a variety of people. Brain tumor survivors who while we're officially friends since we're friends on Facebook I get to see them in person. There will be friends I've made through media, through Spartan, friends from Austin we're joining up. The girl who I kissed at a finish line better be about as close as security will let her after this one if she wants another dehydrated kiss.

I said something during the ESPN interview that I don't know whether or not it'll make the cut (nor am I worried about it if it does). But I said that when I qualified for Boston on the race I'd put off brain surgery for, worried that it would be the last one, at the end I felt like that was the best race of my life. Then when I did Boston I called it the best of times even though it was my slowest one because that was the first my mom, little brother and Kiana would come watch. Then when I would do one besides each of them those were better than Boston. Still I said in the interview that somewhere I dare to dream now that my best race is somehow ahead of me... It doesn't have to be the fastest (though anyone who thinks I'm not gunning for that doesn't know me very well) but I get to do the Boston marathon in 5 days! And a couple of weeks after that I'm doing my cousin's first Spartan race in Austin, then the friend I've had the longest I'll be joining them in Dallas, then for the first time since before brain surgery I'm celebrating my birthday this year by having tons of the family do a race with me... I've woken up in ambulances too many times to assume that those days will absolutely arrive. But waking up in those ambulances somehow reminds me that you gotta put some bright things in the future and it makes me work harder to enjoy the present. It's a fine teetering act not unlike spartan balance obstacles or taking the right pace at a marathon to where you don't crash and burn too hard. So yeah my best races are in the future with the marathon in Boston being the one I look forward to and yeah Boston is on there because it'll be nice running where no one knows my name and yet those spectators definitely cheer like they are very glad you came.

I've had two friends die in the last two weeks of cancer and I'll be thinking of the privilege I had of being their friend while I run. They didn't lose to cancer in my book because they sure went down with conviction and they certainly never quit. We had an unexpected late freeze here which killed some of the outer parts of the tree. I worked on lawn work due to the excess energy of tapering and all the branches except one were dead all the way to the tip... That one had a few leaves at the end. Neither aesthetically nor organically was it the best decision but somewhere in me I just couldn't cut if off while it held onto the beauty of life. I can't promise you time but I promise you I'll be hanging onto till the very very end and I can't imagine anything that would stop me from getting across that Boston finish line.

But again, the playlist is mostly dance songs even if the only move I get for 26.2 miles is a very lame interpretation of the Texas 2step. And when it's over... no matter what the time is... I'll have a beer, a smile and I will shut up and dance.

Monday, April 6, 2015

Cooler Online

There are some great things about the internet but some ridiculously dumb dumb things (like this blog). Lately I've crashed into some moments that remind me that the internet is best used to keep track of life, not to have one there.  There was an odd phenomenon at a runner's happy hour where these three cute girls who I met that night spent and I'm not exaggerating 25-30 minutes of the roughly hour and a half taking selfies with their purple margaritas in different poses, taking them, retaking them, editing in order to be able to post them online and then spent a fair part of the next hour telling each other who was liking them... Maybe it shows my age but if you're spending the entire 90 minutes of a happy hour sharing it with people who aren't there and seeing their reactions of it... that's not my definition of happiness. I'm not saying social media is a bad thing since I'm a guy who posts on here too much and on Facebook too much though I've still not quite understood instagram (shows how square we are?) or twitter (I'm not good with limited characters) since on both of those I have more followers than post. I just think wouldn't it be better if it reflected a good reality not created a fake one where you spent more time creating your posts than people spend reading them or clicking on them?  Watching the March Madness game it was amusing to hear Charles Barkely talk about how the internet is where fools go to feel important (Oh Yeah! Duke is in the finals. Some people sent me congratulations which felt both odd and cool but my favorite one was Duke wins, congrats boy who lived. I've had a few nicknames in my life but that's definitely one of the top three. Oddly enough my bracket still is likely to come in second by one point and the bet I will have lost may be soon be reflected in my online life with them choosing my outfit for Facebook profile pic).
I've certainly had my moments where the internet is intriguing to me. The ESPN interviewer, perhaps just as a way to warm me up for the interview under the old guise that flattery will get you everywhere said he was intimidated by having read some of this blog. Then he interviewed me and I think was less intimidated because one on one sitting across I'm a lot less (not at all) impressive. If I'm completely honest, I get pretty pumped when I use lumosity and get into my top 5 scores or highest score ever on any games, especially the ones where I notice my deficits are getting better. But... BUT... those things only matter to me if they translate into something in real life. Like when my roommate and an old friend who I see regularly say they notice some things showing signs of progress. I try to take this concretely like with one of my New Year's resolution was to not use notes in speeches until I regretted it this year. It was also to make my speeches "better" whatever that means. I'm 3 for 3 and honestly the crowds that intimidate me the least are the runners, the media, and cancer ones which essentially signed up to be there. It's kids whether elementary, high school or college that are the ones that scare me the most since well they don't generally do courtesy laughs. Still in the only place that has had me speak three times, that premed
organic chemistry class, I had the nicest introduction I've ever received (the professor's daughter had introduced me once to another audience too and even offered if any of the single ladies wanted my number so they're obviously a cool family). I landed the speech without any major faux pas but I tried something new.. A joke that I use often here and in speeches with cancer audiences is "Statistically speaking I'm not likely to make 40 but statistics are like bikinis what they reveal is interesting but what they conceal is vital." Then I usually end it with and I don't see anyone here who wouldn't look good in a bikini to lighten the load of delivering news that reminds me and all of us of the reality of mortality. I'd actually never used that joke without a cancer audience nor had I talked about the long term prognosis because it just felt too depressing to people who hadn't really signed up to be there to be talking about my long term prognosis. But this time, I ended the speech with "And if there's any reason I keep running it's to keep fighting to be part of the minority who beats this... plus I want to look good in a bikini." And without notes as the students generally applauded while laughing (I think from relief that I was leaving the stage), I was grateful for that but also that lumosity scores mattered but that that was the best speech I'd given without notes since before brain surgery. I wondered if it was just me telling myself that but Dr. Iverson sent an email that if you'll allow me a bit of self indulgence read:

You were incredible!!! You are getting better and better at this.  One my TA's has seen all three of your presentations and said, "Wow, he is incredible now.  I cannot believe how much funnier he is!!"  Thank you. Thank you.  Thank you.  I am positive you will inspire many of those students just as you inspire me and my whole family.  Best of luck training for Boston. I was serious by the way, we will be tracking you during lecture on April 20!

He had mentioned they would be tracking me during the lecture and since the race is on 4/20 I said it was fine by me as long as they weren't tracking me while using organic chemistry. I'm not sure if I'll be invited back since making marijuana jokes while walking out of a college class might be pushing it further than I have yet. I imagine no matter what the weather is in Boston two weeks from today if I am running correctly at all, I'll be cooler by people tracking me indoors than I will be running a marathon outdoors... literally cooler. Still, if you're online and at races as often as I am, with all the cameras at finish lines, someone caught me on camera kissing a girl at a finish line (of course only time I'ver done it after finishing a race, what are the odds of that). They posted it online and my mom approved, so that's good right? I assure you that while that's available to view it was not cooler online. Well maybe it was cooler online cause it was a pretty hot kiss...

But like a good party, or the right shot of tequila, I hope internet connections are good social lubrications (and here the 7th grade version of me makes jokes about lubrication; actually if you want a pattern the blogs are usually are never reverent but they are far less so after media pieces hoping that anyone who suddenly finds me on the internet realizes that there are better people to keep track of). All of those things can turn bad but are not that inherently. Most of us need a little extra courage to dance better or ask for that girl's number. Sometimes the internet helps me seek out generic advice or help that would be annoying to do so one person at a time. It was entirely through social media that life was kind enough to have me hit $1000 for first descents as a connection with the Boston marathon. And more than once I have used it to figure out new songs for race playlists and I'm always amused at the variety of friends and recommendations that come (if you have one for Boston, send it now and send any song cause the one I'm about to talk about is from 2007 and I'd never heard it!). Most get put in a list of songs to consider since you know iTunes can't make infinite money off me but every once in a while, there is a song that immediately gets purchased. The title of this blog and a song on the playlist is from that request Online (if you go watch that it's a better use of your time than the last few moments) about being cooler online and the personas we put on there. It's a hilarious song still and if there's anything that I enjoy about the speeches it's the self deprecation.

I don't know if that "cooler online" is true for me but if it is I hope that its minimal... I hope the people and activities I love hear it more in person and one to one than in online posts. There is an old adage of confirmation bias that we tend to find people who will confirm what we say. I'm a mediator and sometimes that can be difficult because people don't listen to each other. Or I sat at a community organizing meeting about things facing the school district and got the only applause for the night when I said that maybe we should think about the bigger picture since in a pissing contest everyone gets wet. I actually think it's pretty cool that both of the executors of my will are polar opposite and have minimal online presence cause they stay too busy to post about it. It may well be that I still lack courage in sharing some of my emotions and that this blog is how I hide in public because someone at church on easter said to me they appreciate getting to know me better through Facebook... I tried to rectify that and invited them over to my house for a get together. So I hope as I listen to that song or anything else online that it's only a reflection of a real life not a creation of one. Cause I want to be cooler offline.

Thursday, April 2, 2015

Friends with the Monster

While never mentioned before, today's title is actually stolen from a song that has made almost every playlist in races for a while , Rihanna's Monster. I am not quite sure what it says that so many of titles come directly stolen from songs (with that said, it's because I was listening to it as I'm working on the Boston playlist so if you have any suggestions...). It's a strange frame of thought to try to make friends with the monster that lives inside of my head, a cancerous brain tumor that people expect me to be happy about is stable but those monsters in the closet or under your bed that you fear as a child, you don't fear them because they are constantly bothersome but because you fear they may pop out at anytime unexpectedly and then well that bedroom you called yours suddenly changes owner much too quickly.

I have a friend with a tumor who I've written about before many times. He went into hospice care much too quickly and I've received messages from people in his life regarding all of it, one of them literally the moment before the ESPN interview was going to start last Monday which sure kept it in perspective. He's a friend who beat me in a race once upon a time at Duke less than two years ago and has now stopped treatment after it was proving less than fruitful and the neuro oncologist we share said to the family that was the fastest they've ever seen the tumor grow... I think he's a far better guy than I've ever been and in these helpless moments you don't know what to say or do and wish there were moments you could trade places. This is probably the hardest cancer change I've had to take so far for many reasons: he's also a father of young children, he's a man of solid character but among those reasons, this guy beat me in a race and I'm no olympian but I'm certainly not known for being slow. PBS is currently doing a good series about cancer where they call it the emperor or all maladies... I suppose that's a more clever title than the one I would have come up with which would have had a few more swear words in it. We highlight the stories of success but it is perhaps when people who were genuinely healthy and young are robbed so quickly of life that keeps me motivated to work hard at the research again cancer. The picture of he and I at the front of a race has hung on my fridge for many reasons for a long long time and will be there even longer. I would say it's one of the few pictures in my house that's not family but that's not true because he's my brother.

And it is that and that alone why I've continued to let parts of my life be in reaction and proactive action to the monster, a vague attempt at being friends with it. ESPN was here and it was actually an absolutely human crew covering the human interest story... Tom Rinaldi, the guy who interviewed me before was incredibly apologetic about that it had dragged out so long and had some of the best questions I've ever been asked (though I assure you the answers were as bad as usual). He scored some points in the way he interacted with Kiana and the way he switched gears between asking me questions and asking her showed that while he might be a serious interviewer but would have been able to be a kindergarten teacher (I sincerely question which one of those jobs makes a bigger difference). The camera/sound crew somehow managed to come alive when off screen and become invisible when filming. They scored serious points when my mom made them dinner and that unlike the supposedly good father and son they were filming, they actually kicked her out of the kitchen so that they alone could do the dishes. And the producer asked me some questions in English that I was supposed to answer in Spanish which was confusing for my brain and tongue but hopefully I said something worthwhile. She actually had seen some other pieces I'd been in and previous filming and her simple pointer of this isn't a live interview you're allowed to take a second to think tip helped me be focused and as at ease as you can be under those circumstances. Or it might have been the fact that when the crew was setting up I went out to run right before listening to various songs ending with the last one being a great hymn. And while running is my therapy, humor is my coping mechanism so I couldn't resist when they asked me to try on what I would wear for the outfit so they could check the lights with it to come out with an outfit that for some reason they asked me to change while fully acknowledging they couldn't pick my outfit for me... I changed mostly cause you know my mom might watch it. I think this was the first crew that completely realized that I do this because well I hope in sharing it, it will highlight the right causes and the right people (which are not me).

Though while the media is certainly a monster of sorts to me, I've struggled that different ones mention different things and feel like they gloss over certain facts or details which my OCD wants to inset. But someone finally offered an explanation about tv pieces or movies that are about true stories that made it make more sense to me. They were talking about Monet and said "You don't fact check Monet's Water Lilies. That's not what water lilies look like, that's what the sensation of experiencing water lilies feel like. That's the goal of the piece." And somehow with how I and Kiana felt around this crew... I think they'll get enough of the facts to get the feel right... when it airs in 2024 at 2 am :). Still they seemed to be the most understanding about why I rarely watch these things. 

But ESPN was a hassle in someways of course but I hope that is the final time my house looks like a
reality show. I had other weekend plans that were the real joy and point of the weekend. Saturday was actually the first time I ran longer than a marathon in one day because I had gotten my last 20 mile Boston training run and we ended up running more than 6.2 for the filming... they were apologetic about and said well you know part of that was your choice to which I replied "Yeah but it wasn't the 20 mile training run." But Sunday's running was the best race yet... You know I thought once upon a time the race I'd put off brain surgery was the best one, and then the one I won with a stroller was the best one but the one with Head for the Cure this weekend was. For the 3rd month in a row my mom, dad and Kiana and I all did a 5k together. For the 3rd month in a row each of them got their fastest one. But for the first time ever each one of them placed in their age group (Kiana 2nd, mom 3rd, dad 2nd). It's little moments like that which make me think that maybe the universe will be kind enough that for at least a little while longer my best race is still in the future.  We had an interview for that as well if you're into that media stuff. It's a nice question to have no answer to whether you're more proud of your parents or your child for working hard at getting better. Still, there was a time when seeing the overwhelming odds or the low survival rates where it was temping to put my head in the sand and I'm thankful for the people who helped me keep looking forward and up the way Kiana did on the last hill of that race.

Still, the best parts of the weekend weren't ever when any cameras were rolling. There was easter egg dying and hunting after they dried... Turns out if you have a few spartan things set up in your backyard some of the hiding is easier and finding is harder. And turns out moments with flowers and Amy's ice cream and moonlight and being out on the deck make you just keep appreciating life. I've never had a good day but I've also never had a totally bad day that I can think of... so you try to balance it. In the latest Spartan piece, I talk about the beauty of signing up for challenges so that the ones you don't sign up for are easier to be relieved. This actually was a tough thing to see myself say as someone I was visiting with cancer who was in a lot of pain was asking in a less than happy fashion about how I didn't warn them about how much pain and misery this could come with. They said I probably liked the pain since I sign up for marathons and to crawl in dirt and under barbed wire. They added that crawling in dirt was where they were going to draw the line. It was an awkward moment for me but I gave them a hug since you know sometimes even us non huggers know that the only way to deal with the unexpected is to hug it out. But I am honestly not sure how hugs feel on the receiving end with friends who know that they are past the point of treatment being available... but on the giving end, I'm trying to scream with the squeeze on these arms that they weren't alone the way out. 

And so I get back to dealing with becoming friends with the monster, watching my doctors come out on Sixty Minutes about how we have finally made some progress with a more advanced form of the same type of tumor I have. These are not generic doctors, those are my actual doctors, the one whose hands I placed my life in. It was pretty emotional to watch. They had actually sent me the same study before but it was interesting to see it portrayed by other patients and the narrators. Watch the piece for a better understanding but they've finally gotten the immune system to attack the tumor by injecting people with a modified polio vaccine. I used to volunteer for a Post Polio organization in high school so I had a little bit more awareness of how it could work because polio like this tumor only attacks the cells that are in the brain and spine. Thing like that make my heart echo the sentiment that we maybe at a tipping point, a through shared from someone 6 years into this went-from-stage-2-tostage-4 friend whose on an experimental treatment that like this one only recently became available. I'm still a betting man and I know the odds are still stacked against me but this is the hand that was given to me and I'm glad I'm still at a place where I might have a chance to win and not have to fold. Who knows how it'll turn out but somehow it felt just right that it came on immediately after Duke made it into final four at March Madness... This is the first time they've made it since before I had brain surgery and so maybe they won't win it all but like their medical team, they've had past victories and are closer to a new one than they have been in years and like my parents and daughter's PR, progress matters. Like the obligatory I live in Texas so I have to take a picture of my daughter with bluebonnets in the spring, it's comforting to measure a new season with happy signs of life even if it can't last forever. 

And I am honestly finding new hope... maybe it won't be in time for me but I think we have a greater chance of getting there. Speaking of time, obviously it's because of my situations but I've bfileeen fascinated by the covers of time magazine that have echoed to me. We mapped out the human brain for the first time ever a couple of years ago and it was on the cover and the honest thought I had was well... yeah I'm definitely not beating this if we're just now figuring out the organ, how can we understand the disease. When uninsured that Time covered the Obamacare bit from a critical standpoint in the longest piece and the revisited the entire plan after the writer had gone through some health issues definitely created his view point to see a different angle. And one of the most recent cover of Time is two women with brain cancer and how they are doing very differently... the highlight is obvious about different places and treatments which is a critical point to, well, criticize... but there's also the reality that there's a gap at all is a good thing because before it wouldn't have mattered where you went. But if the magazine does a good job of measuring the passage of Time, I'm glad to see what the covers were and are because they are measuring progress and hope. I guess I'm old enough to remember that technology and progress use to move more slowly but my daughter has more information at her fingertips on her iPad than the president did when I was born and I'm not that old so... things can move quickly and perhaps I'm naive but I dare dream it will move in the right direction especially in the health direction.

But I'm not just daring to dream... I'm affecting in which ways I can but perhaps one of my favorites just occurred for the 3rd year in a row where I spoke to a bunch of premed students in organic chemistry at the University of Texas which will soon be the place where the first medical school is launched in the US since before I was born. I made jokes and my main point was to get them to sign up for the Longhorn Run which Kiana and I have done before. Still, somewhere I hope that the ones who become doctors or the ones who don't realize that exercise for performance or for fun or both health health and humanity to stay linked to the core.

So today I go do some hill repeats like Kiana did yesterday after swimming 300 meters. She's part of a school fundraiser and so I gave her incentive to work harder by saying I'd contribute more for extra hill repeats and it was the most expensive workout of my life. After my hill repeats tonight, I'm going to a happy hour with the group where people will talk about heart rates and repeats etc. and talk about the monster that training can be sometimes and that's all right. But, Kiana waved at me in the middle of each lap in the pool yesterday and high fived me in the repeats. So she's a long way from seeing exercise as anything other than just fun. That may have been my favorite part of the interview is that when they were talking to me they asked and got thought out and thorough answers about the why of running but when asking her the same question, she just said it was just fun to stay fit and had no more to say. So here's hoping I keep outrunning the monster that I've associated with running but much more, here's hoping Kiana realizes it was always her friends and stays with it every step of the way.