Friday, May 22, 2015

Clouds be rolled back

To me life is magical, mystical, mysterious, wonderful. The simple act of getting up in the morning is the start of wonder as you try to make what dreams and fantasies life has let you have another chance at rising to them is a marvelous privilege.

This is the way I try to focus as MRI's get closer... I know people want to me to go just by how I feel but I felt fine moments before seizures everytime and it was MRI's that gave us a clue. Many cancer patients feel fine before imaging and the simple truth there are some things that some times feelings are not the indicators of truth. 

So to quell the nervousness... I try to focus on the positive. I've never had this rainy of a year in my almost 10 years of Austin and my lawn is in better shape so I capture a picture of my little girl and realize that the grass couldn't be any greener on any side of any fence. And she sits there and creates lions and giraffes and owls and monkeys out of toilet paper rolls and paper towel dispensers. I never had much of an artistic side (an elementary teacher once held up one of my assignments as an example of what not to do) but I sit here, trying to learn and absorb a girl who captures life better than any picture I've ever taken. She watches butterflies and snails with a care and wonder that I hope she never loses and that I dream, I hope I've contributed to in some way. 

And I realize that the things some of my family originally thought were crazy like races, they are now doing on their own and sometimes on the same course as me. All of the cousins who had done the previous weekend of Spartans came back and did it again the second weekend and improved their time and failure rate (myself included). And I went back and finished with all of them this time taking less time to find them on the course. Others are talking about doing races on their own again or joining me again. I don't know who to be more proud of among them, Cefy who did it all on his own long before he realized I did it and did it with an injury. Sammy who has been weight lifting all his life and is now signing up for 5k's and spartans which push him harder and he's moderating his diet and workout techniques to correspond, or Omar who was much smarter than me. It took me over 3 decades to realize that, yes some races you should do on your own but  the way you make some races special is to do it next to someone you love and in his son's first spartan they were a joint force that no obstacle would be enough for. I usually do the elite heat where we play for money and winner and all obstacles have to be done by themselves (sometimes figured out by yourself cause when you get there, there's no one else to watch in order to learn how it's done). And I'm competitive and I like it and realize that leaders in any field sometimes have to go a bit lonely to be innovators. They are extraordinary and should be commended as such but those of us who are just ordinary kids are glad to have some extra moments with each other.

And to head straight from the race to see my dad for his 70th birthday. It's not often that the three brothers are together but I was glad to have us there for a man who has been a force of nature for us, certainly for me or perhaps that would be better phrased as a man who has felt so natural to be part of the same family. He is not my biological father if we're arguing about genes but legally and more important at the heart of the matter, he is my dad. And like me, he grew up without a whole lot or too many birthday parties in Mexico and we had some very good serious conversations about many things including what he did with me, which was come into my life at a young age and then have a won with my mother which never have I perceived a difference in how much he loved and cared for each of us. But the man who gave me the Leon name we certainly had a good time cheering him hitting a Leon pi├▒ata. It's not often I head to west Texas but I went straight from the finish line to his party for a several hour drive thankful for a lifetime of support as well as him having joined me for his first 3 5k's at 69 years of age. Appropriately enough, the next time we're celebrating a birthday will be the only time I'll likely celebrate one in my 30's at my brother's house
in portland where once again we do a spartan, first time a race falls on my birthday. Pinatas, burpees, whatever way we want to swing at catching a few more years. I mean seeing him turn 70 and hugging my grandpa who was 84 that weekend and remembering my great grandfather who made it into his 90's that we should definitely question the idea that only the good die young. Here's hoping I live to an old age because if I die young so that I can discredit that idea that way rather than the not so good dying young (I'm still young right?!?). 

Still as I rode home and had my iPhone shuffling through the many hundreds (thousands) of songs rather than a genre or a playlist, I took those moments to look back at that obviously since my wife left in the middle of cancer that there were some relationships I had not taken care of appropriately but also that I am closer now to many of my family members than I was before cancer. I don't know whether it's a mistake or a reveal when jobs, circumstances, cancer disrupt your relationships or a tell but I'm thankful for the ones that obviously moved the right way. A couple of people had shared some of their health issues so I looked back to my previous MRI were somehow life was kind enough to where right before those nervous moments someone came up to me unexpectedly and said "I'm a hugger" and hugged me right before the meeting with the machine and maybe the hug had enough strength to get me through two MRI's, guess we'll find out soon. But the song that got put on repeat a few times was the old hymn that came on, "It is well with my soul." I couldn't help but focus on the lined comparing life to weather. The previous race in Boston was cold, and windy and rainy; I thought of it like an ice bath and figured it had to be good for my joints. The Spartan races in Burnettt due to the rain were muddier than usual but it was warmer than the east coast so I figured the mud bath was good for my skin. But as I listened to an old hymn that my mom sang and hummed so much I took in the glorious weather and realized that no matter what had happened and no matter what had come... that well some part of my faith had become sight because it really all was well with my soul.

And I arrived home exactly as I had the previous time from west Texas to an Austin Runner's club run, a club that as of yesterday I am officially the president of. Home is where the heart is and leaving from races with cousins, to see my brothers and parents and grandparents and returning to the club I run with, well if home is where the heart is, seems like I was at home the entire time. I came home to work on logistics and I've actually been dealing with some medical billing issues from a couple of years ago that were incredibly frustrating but I went out and ran stairs to remind myself that if you do an intense enough workout, even if temporarily, at the top of those stairs you've put your problems beneath you. 

So I go to parties where we fight brain cancer with a race as we kick off the Brainpower 5k. And I sit through questions that I didn't expect where a pastor wanted to ask some questions so he could share it in his sermon this Sunday... And as I get ready for my first honest 5k racing by myself (the ones with Kiana were more fun so far this year) with Voices Against Brain Cancer in New Jersey followed up being an advocate in DC for One Voice Against Cancer... Both more important on a massive scale but on a personal scale hopefully preceded by a stable MRI, a happy ending to Kiana's 2nd grade, and someone to hug that puts in perspective. 

So the only thing that will roll back like a scroll is the medical room changing, I don't know what that MRI will put into sight but I have some faith that whatever my lot, I'll be greatful to say, it is well, it is well with my soul.



Wednesday, May 13, 2015

Quiescent Orientation

I was seeing my internal medicine doctor last week on 5 de Mayo for a 6 month check up and to my disappointment they had neither chips and salsa nor margarita... It started with checking my weight and pulse as it always done... not sure how reflective it was but I went literally there from hill repeats and it turned out I had lost weight (170 lbs of pure muscle baby, yeah right )but my heart rate was the highest they'd ever measured it at, 61. From an appointment in March where it was 42 to 61 was explained by coming straight from a workout.

It would not be long before the nurse and the doctors were checking my internals. They're both great beautiful brilliant woman. Still two women talking about what's in my blood while this was informative not exactly my fantasy of two women and what my blood is doing. They threw out counts and various things, some of which I understood and some of which I just accepted that even if nothing was wrong with my brain I likely would have never understood. The doctor though kept using a word about how quiescent my tumor was... she used it enough times to where I tried to subtly google what it meant but couldn't figure out how to spell it so I finally asked. It means dormant and/or inactive and she said that she honestly believed that how active I've stayed plus taking onthe variety of activities that I've taken on is keeping my tumor quiescent because other healthy cells are the ones using the energy's body to regenerate. That was obviously a theory and she mused about how being part of group statistics was probably not going to be too helpful (I am unique just like everyone else) because of how different I live life than so many other cancer patients but that she'd be intrigued to have me as case study. We talked about Boston and the upcoming Spartans. The appointment ended with two surprises both of them being pleasant. The first was that the internal appointments were going to become annual instead of biannual as long as things stay steady or improving really. All this time in this battle against cancer, I've been playing to win and lately I've started to believe I think I just might. The other was that like my neuro oncologist she was also leaving her practice but also taking me with her as one of the patients she was taking. I try to take it as a compliment that they take me with them and hope that it's not like a train wreck where they just can't take their eyes off the mess....

Still... I went from there a little bit more pumped about the Spartan race weekend. I hadn't done a race since Boston and hadn't done the Spartan since before that. Now I was going to be doing two races in one weekend, the Super in the Elite heat where I went back and cheered friends into the finish line. The one that I was more excited with in case it's not obvious that my favorite races are the ones with company was Sunday where it was the shorter race with my cousins. Now it wasn't like my brother's first Spartan where I did it side by side with him. This was a cousin who could bench press more in junior high than I can now. There was a cousin who was always more athletic than me and to me this was going to settle a generational argument about who was the best athlete even if all the girls think they're taller, darker and more handsome. 

Sammy actually came in to stay at my house the night before. Spartan right now has a campaign going of #whyIrace (cause things are cooler with hashtags) but he's a guy whose not really been doing aerobic stuff till recently running 5k's for the first time and this Spartan sprint would be the longest and hardest event he'd ever done. I asked him why he had started doing this and he told me it was a way to get over a girl and then we traded girl stories, mostly he wanted to hear about the girl kissed in Boston and turns out he had figured out who it was from a previous conversation so I was impressed with all aspects. But it made me realize why we're family because we'd figured out a way to calm the demons of our heads, our hearts of our emotions with healthy things when they were most disturbing.

I love marathons and always will but spartans have a special appeal to me in that I've done them in different places but they tweak the obstacles, make them different, put in new ones, make them harder. On Saturday during the super I had missed 3 (resulting in a 90 burpee penalty) but they were all ones I'd never seen before so that was comforting at some level (I was far more excited about the new ones that I'd gotten on the first try). It was rainy and muddy so I'd hit some rocks seriously in the worst possible way I've ever gotten shin splints... still I'd had enough left to jump over a fire into water to finish with conviction. 

Sunday I was not far from the finish when I saw my mother not far with the last 5 obstacles left. I had already missed the one I'd missed the day before and the other two were at the end. And internally I was like oh come on, I gotta try to do better, mom's cheering now on mother's day (this is the place where I should get judged for my mom coming to me on mother's day and not the other way around... do I get any credit that I stopped and gave her a muddy hug and kiss in the middle?). Still, somehow with actually far more ease than the day before I failed exactly zero of the obstacles she was watching which was true in the last Spartan she cheered so turns out loving your mom and feeling it back on the course is very good for me. 

Then I went back to finish with my cousin, my cousin Omar was doing it with a friend of his and was showing his athleticism. Then I went back to finish with Sammy who had less than a mile left but had started to struggle... Still there wasn't a single obstacle where he even seemed to suggest anything other than finding some way to get it done never taking the option of walking around it or doing burpees without at least trying. Perhaps the hardest thing to watch was when he took a serious slide down a muddy rope wall... he didn't say anything and I had climbed it and looked down at where he had slid and said... "well at least you've  wiped off the mud for the second climb..." His mom and my mom cheered their heart out as he did it once again all the way to the top successfully. He'd miss the same two obstacles I'd missed the first day and even as he sat there cramping we sat there and did burpees. It occurred to me that we should face the finish line which was a frisbee throw away so that even as we went down, every time we came up we got to have a glimpse at the goal he'd reach for the first time, a Spartan finish line. He got across the line and while I'm not usually much of a hugger, I couldn't resist embracing him with the heart and conviction he'd faced the course with. 

Less than 48 hours later both of the cousins since it's in Austin back to back weekend had signed up one more time. I think this time I'll remember to hug them at the beginning of the course too. Omar is even bringing his son and they're going to do the course side by side and my cousin Cefy is coming from West Texas so 4 cousins from four cities. I guess for some people racing is an individual sport but for me, it's something I do with people I love. 

Kiana and I had dinner tonight with a friend whose dad died of brain cancer. She told me stories about him and their childhood memories. About how he had outlived the prognosis and made it to 15 years. She told me about the cool activities they shared and some of the ones he did on his own. Like me, he had lost spatial orientation due to it all (I usually run with friends or a phone but my latest GPS watch Vivo Smart has a built in feature which points you back to where you started). I'm known for getting lost which has happened in races and workouts and I take the jokes about it good natured. That and the fact that I've been mostly a runner makes the spartans particularly tough but also particularly rewarding.  She shared about her dad had always stayed active but there were certain things in water events like surfing that the spatial orientation had made for some amusing and nerve wracking moments. e had clearly oriented life for her into active healthy things and the heavy negative things he'd kept quiescent by doing so far longer than expected.  The way she spoke about her dad with such affection and warmth that if I do half that good a job of parenting I'll be fortunate.

People have questioned why I don't focus more or just strict running or strict spartans or strict anything... they don't realize that like today where I went on a trail run and we stopped in the middle of it to drink water from a natural spring or to jump off a swing that landed in the lake. Those things reminds you the running is the excuse, loving life that's the reason. I had no clue where we were and Joe and Ty helped me stay on track but never once did I have to look to my watch or anywhere but my heart for the right orientation. And those 8 miles were more fun than any training run in a while with company. 

So I don't know why the tumor cells or at the things that haunt me I try to remember that I want to feed the right cells and the right parts of my body which are the parts that interact and love others and not just like cancer are all about self replicating... or like CS Lewis said

"To love at all is to be vulnerable. Love anything and your heart will be wrung and possibly broken. If you want to make sure of keeping it intact you must give it to no one, not even an animal. Wrap it carefully round with hobbies and little luxuries; avoid all entanglements. Lock it up safe in the casket or coffin of your selfishness. But in that casket, safe, dark, motionless, airless, it will change. It will not be broken; it will become unbreakable, impenetrable, irredeemable. To love is to be vulnerable.”

But I think in being vulnerable in new activities and in life and in love, it's made the ghosts of me quiescent and kept my head, my health and my heart to stay correctly orientated.

Monday, May 4, 2015

F is for...

After my last MRI back in December, I was given a new computer for Christmas which resulted in some interesting mistakes. But a guy who makes memory mistakes keeps a pretty accurate calendar to not miss being where he's supposed to be... for most things I set up a reminder of 30 minutes before but by the nature of my life some things take a few days preparation for travel etc. I don't know if it was the fact that I didn't know the way to put in calendar things correctly, the relief of the MRI going well, or just not paying attention. However just because the computer was given to me that day it would be the first thing I'd put in the calendar program and this morning I woke up that my next MRI is 30 days from today (the warning has been changed to minutes since then). I did not want that reminder this far out but I'm here trying to absorb it. I try to remind myself about that there was time the MRI's were a month apart and then 2 months apart and now they are where they will remain until as long as things are stable, 6 months apart.

I try to be a planner so in simple frankness my MRI schedule revolves around one thing which will be no surprise to anyone who knows me.  The MRI's are always around the end of the semester in case there is something growing or something bad then I can enjoy the Christmas/Summer vacation with Kiana and if it's necessary for her to change schools it'll be a more "convenient/smoother transitional" time from her to having to change from the house she's lived in since birth and the only school she's ever attended. While some have called that planning sentiment cautiously noble on moments of more awareness or honesty, I have to acknowledge to me and well this blog that it may just be trying to have some say in the parts of my life that are uncontrollable. I've been commended for finding doctors which enabled my running and exercise habits despite other medical restrictions (scuba diving, soccer, being on a roof)... it's a delicate dance to me which parts of my life they and I are in charge of, people who I've literally placed my life in their hands and how we manage that trust. The two executors of my will have power of attorney over my entire life so that they don't have to defer to any doctor but rather to knowing me and doing what I would want (though many disagree with my approach but it's deferred to friends since waking up in ambulances reminds you that the technicians and doctors who end up working on you may be people who you have no say in and couldn't pick their faces out of a crowd literally not far down the road). There have been four cancer deaths in my life in the last 4 weeks with the one mentioned in the last blog the one that's messed with me the most in my entire life. I see the things people say and post and worry; one of them even triggered me to update the Facebook settings that apparently now will let you decide what happens with your page when you die (mine will do the same thing as the rest of me; it will cease to exist). It shows perhaps how good of a friend I have in that one of those executors when he sees me struggling with all this sincerely asks how I'm doing and then sarcastically uses my humor coping mechanism and says look if you do this too fast before we're like 80 years old, I'm not setting anything up for Kiana, I'm just going to Vegas.

Still, like birthdays, anniversaries, school years, months etc, the passing of time in the ways we've tried to define it gives us some measuring sticks so I let my mind wonder during today's about things that have changed since that last MRI... the last time for the first time ever I went somewhere I usually run at top of a hill and just took a city in while breathing at a regular speed with a cute girl who while nothing else happened in a place where lots of couples apparently do other things, she turned out to be a hugger at just the right time. That moment has sunk in and I've used that thought to go on walks with other people in places I'd previously only run including other cancer survivors... learning to appreciate places and people of different speeds at places I had associated only with training before.

I found about all this through an ambulance ride followed by imaging... some people find out things getting worse from no sensation but only through imaging... I could tell it more politely but that's really shitty. Since before the brain surgery I'd had a plan that I didn't want to drag out death; that if I didn't have responsibilities and promises to keep I would have just gone to the Grand Canyon and climbed in and out having seizures till I died. The Grand Canyon's been mentioned multiples times both in here and actual articles about me and the answer to why it's there is because while I'm a guy who loves company... to go die alone is a way that I hope will make it easier on other people and frankly for myself. One person who I was visiting in hospice once yelled at me that I didn't warn her enough about how miserable this was and that I would probably like it since I sign up for things that causes pain... Another person dealing with hospice more quietly said that they finally understood my Grand Canyon idea but didn't have any way to get to anything like that. A girl who is usually a better communicator and writer than I'll ever be was reprimanding me pretty strongly into what I've built it up. It made me reflect that I really had made a place into a monster of my own making; I'll let you decide whether or not it was better communication when she responded with, "it's your fucked up death fantasy." She apologized for that but I'm not sure an apology was due... It was one of my new year's resolution to go there in 2014 and I didn't go and I think about going this year to face my fears, perhaps even making it the first time I take a trip entirely on my own. Maybe breaking the association the fantasy would be to have some fantastic french kissing there or a fabulous race...

May is brain tumor awareness month... I'm never quite sure why we have so many faux days like siblings day and this awareness month but if it gets people to smile at some of the cheesy ones and do something positive for the other ones... that's not much of a price to pay. We kicked of the Brainpower5k registration with a marathon relay all by brain tumor survivors... Shocked I was that I got the longest leg out of anyone :). But anyone  who knows me know I didn't do it alone and Kiana did it with me riding her bicycle. It was on a crowded trail and so we had to maneuver and go a little slower so I actually had run 10 miles before since they don't let me get out of shape. When someone found that out that I had done that, gone home showered and was now back to do 4 more, they said "man, you have an illness." I couldn't resist apologizing with "Yeah that's why I'm here." The race director whose always been an older sister to me (I mean younger if she's reading this) wanted to talk to me about how I finally need to get a girlfriend still since it's her and the race committee's decision that I will step up my game like George Clooney did propose at the finish where we have a blown up brain every year. This year will be the first time I don't have a chance at winning it by the way since we're doing a fundraiser where I start behind all the runners and see how many I pass and are hoping people will donate anywhere from 1 cent to any amount for as many runners as I pass... if I and the race have a good day it should fall somewhere above 1,000 people. I hope Kiana will be running it to but it won't be next to me for the first time but maybe I'll have a girlfriend who can keep up with her by then in many ways. I'm sure Kiana will be fine with either.

But with the calendar reminder, it made me look at other things around then. Besides the MRI results coming in the last day of school and before Kiana goes to visit with her mother for the first 2 weeks of summer vacation, my next trip is to Washington DC. It'll actually be the first time I fly anywhere this year not for a race but I'll be joining many other good voices in One Voice Against Cancer. We're only there for a day and I've never done any government lobbying but no one should assume that me going is like when Mr. Smith went to Washington. I'm flying there the day after MRI results and there are no parliamentary rules or procedure that will accurately predict whether I'd be more or less effective depending on if the results are stable or less than so.


I have multiple races this month, currently 4 spartans and perhaps a relay leg of a triathlon so the body is going to be hurting but I just keep believing, hoping, dreaming that if I keep moving that when I have to sit in that magnetic machine that was so lifeless and dormant that they built a room around it that I'm still ahead of it. If there's a way to have no fear, I haven't entirely learned it. But there will people from the Spartan world, my family, running, the triathlon world, the ultimate frisbee world all there during one of those races and I think it's awesome and I hope it's one of many good ways to continue to relationships and say thank you for it. I've done races next to exactly a hand full of people and I'm a hispanic male who struggles with sharing emotions but I hope I made it clear that's a way I say I love you.When I attend church and they have baptisms they talk about people who faith not having fear but studies confuse me since Christians tend to stay on life support than any other religious/non religious group. No one should judge the church I attend in by me (which is why I'm not a member) but their grace and humanity continues to help me believe in both.

There are moments where the beautify of Kiana catching that just fascinate me... A butterfly landed on her and just kept landing on her. On her hand, on her shirt, on her hair... it just flittered and flirted with her and while I tried many times I was actually only able to get one decent picture of it with the butterfly on her hand.... Kiana was enthralled and enthusiastic and I couldn't help but smile and think (internally), I hope that catching beauty like this is always the only way my daughter gives life the middle finger.

This blog and certainly this entry have never served any grand purpose other than to remember the moments that mattered and try to make sense of them. It is not as clean or as effective of a therapy as running (or as seeing a therapist for that matter) but it helps when accident calendar reminders pop up 30 days before they should. This was certainly a stream of consciousness writing where we discussed a lot of f words, friendship, faith, fiancee, fantasies, finally, feelings, fingers but I am a cheesy guy and now the Star Wars previews are coming out and it's May so let's just go with that F is for me wishing anyone who reads this a good day and saying "May the 4th be with you."




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.