When You're Home

Since the brain cancer journey started, I became more emphatic about being a simple and practical man often declaring one or the other or both. I expound on these definitions with phrases like 'home is where the house is' or quote my grandfather that 'if it's about money, don't worry about it, we don't have any.' But I know somewhere in me always lies the hopeful romantic, somewhere a wild spirit that both runs with and to his fears, to overcome them or to be overcome by them on occasion if I'm completely honest.

One of the places where the idealistic memory prone despite the memory being damaged in me is an annual tradition of hanging up an ornament representing the most important event of the year. Sometimes it is a singular event like Kiana's birth or marriage or how brain cancer was handled. Others it's a little more stretched like on a year that was the most travel we stuck an airplane ornament.

This year it was difficult. It was a heavily traveled year with 4 out of town weddings, two local ones plus a couple of cancer events, plus a couple of athletic events. It was the year we lost our dog though for whatever it's worth, no sad thing has ever made the tree (getting her once upon a time was the ornament). Nonetheless, I contend that sadness should and I hope will never be the most important part of my year. It's against my religion to have bad days and I rarely sin and I hope your faith can absorb that whether you celebrate Hannukah, Kwanzaa, Christmas, Festivus.

In the end, it was an ornament shaped like a piñata representing Kiana's 2nd trip, Elaine's first and my first return in quite a while to the country of my birth, Mexico. I am an immigrant by no choice of my own since I came very young. I taught Spanish for 3 years and yet have been inadequate at sharing it with those I share a house with. Still there I walked them around neighborhoods where the houses all had protection like the poor people still had broken glass up on their fences because no matter how little you had, you protected the people inside.

But I've been expanding my definition of home to something less simple, less practical. I've been working on many relationships, some that took me too long. I've been trying to connect more with my biological father who I didn't meet till I was 15 and he didn't know I existed till then. I spent almost a quarter of a century putting almost no effort and now that we've been talking, I realize he's been keeping track of me through social media. All this time I've been sharing on there what would allow me to call some people less (yes, a cheap copout I know) and it allowed him to get me to know me more. I've been trying to do the same with phone calls. There's a possibility that my grandparents will be having their 70th wedding anniversary there next year and whether it's that or trying to get him here, I am embarrassed to admit that it will be when Kiana's also a teenager when they meet. Somehow the furthest thing on my calendar to dream/plan is a race in the state I was born so finally the place I've been running from I get to run to.

I've been actively calling my brothers more and we've traded stories that we didn't know we didn't know (some I imagine my mother is not happy that we finally shared). I moved out when I was 14 and we've never shared residence in the same city in adulthood but family is family. I'm absorbing it and sharing it more. Some people have the privilege of being born and a part of a more traditional 'nuclear' family. Neither in childhood nor in adulthood has mine paired out that way but in the modern age we say love is love eh? Turns out loving with conviction is the intimacy I'm searching for not how people will judge me. Believe you me as I hear about Kiana's first break ups and her friends ask me my pronoun and jr high shows me that karma is real with some of the things I said to my parents...

I keep letting go of fears as best as I know how, I suppose that's how we stopped being caveman. Though now I'm fairly claustrophobic and not a fan of the dark so perhaps facing caves more often would be good for me (I'm taking Kiana to a cave over the Christmas break). Maybe I can get what's damaged in my head to go to a different level than I'm used to. I am also not great with heights and still Christmas eve started with going up on a hot air balloon on the last used wedding gift that Elaine and I received. I didn't know much about it before going up it but it turns out just a small percentage of height can take you in different directions. The pilot wrapped up the flight by saying that it was like marriage you don't know where you're going but you do the best with what you've got. He concluded the lesson with letting us know that the first hot air balloon was torched because people thought it was out of the world. In order to be more recognized on future flights, they started waving champagne on their way down. I'll tell you that champagne helps me feel more human on occasion and it has this Christmas and I presume will on New Year's.

Due to all the wedding travel though, we didn't go anywhere and no one was here with us. It was Kiana's turn to be with her mother. So a fair share of Christmas eve and Christmas day were spent on the phone calling people who I could shout I love you to out of a car window if they were passing by but sometimes saying it softly and repeatedly is more effective. But I realized as I called people in different states and countries that home is spread more than just my property, more than just walls. I've left a little bit of home in many places and many people have left a little bit of feeling like home in me. I've been all over the world and I don't have much to show for it but I have a lot of heart and soul take it in. Turns out Dorothy was right about the sentiment that there is no place like home.

Christmas Day started with a run where we crashed into Santa sitting on a bench. Then we went out to traditional Chinese/Jewish food of going to an Asian restaurant. I've done Christmas in many places but life has been kind enough to where I've never been alone so turns out I've always been home for Christmas.

Live A Great Story

All around my hometown of Austin there are these big stickers plastered with a simple caption of 'live a great story.' I love the idea, that concept. I've been thinking about why I blog a whole lot less this year than I ever have before. I could make an easy joke about how I've got less time and space because I've been filling it with sex, drugs and rock n roll. I could tell you that now the worry is less cancer and the fact that I'm still alive to watch my daughter go through Jr High with its awkward ups and downs.

But just as in back in 2016, when the blog entries got to be half of what they used to be and now they're about half of that, it's that the intrusive brain tumor intrudes less and less into my life well there's less need to write here because after all it's own subtitle would be betrayed by that "An Incredibly Raw and Uncensored Blog of how a Guy copes and hopes with brain cancer and life changes." The MRI's moved to once a year. This year instead of spending December 8th wondering how the MRI or it's results or the neuro oncological appointment was going to go, I was sitting around a fire watching a sunset snacking on some mushrooms realizing that while my memory isn't all it used to be there were still some things making great impressions.

But I suppose another reason I haven't been blogging is the same reason I didn't blog a lot before brain cancer. This was that story specifically. I know we are in the sharing age where there's this platform for your thoughts (given the write number of characters) or that one for your pictures (as long as they're square) or that one for your links or that one that will self erase etc etc... But when I'm most honest, I know that many of my fun stories are not ones that I'm going to share on social media (like that crazy bachelor party, or some questionable financial decisions, or how my bed broke once, or some things from international trips which aren't super PC). There are ones that for better or worse I'll have an easier time telling my daughter than my mother and some that I'll likely never tell either.

Still, there are some relevant ones that I want to share. There was a time where I was going to a musical in the park, Hairspray, with a friend and her parents. I only downloaded one song, I know where I've been. Now I took them who were now my in laws and my daughter to see Evan Hansen where again I only downloaded one song, Only Us. Change is life's constant but some things have shifted and upgraded.

I'm 9 years into cancer and it was around this time I was deciding whether or not to have brain surgery. I put off brain surgery to run a marathon and then appreciated the people who walked with me afterwards. Now a friend of mine has a part of his skull missing temporarily and we have regularly gone on walks and outings. The universe balances itself out in the end I suppose.

The better part of 7 years ago, I was winning a marathon behind my daughter in a stroller and a lot of media would come. A lot of invites have come since then but among my favorite was the one into the obstacle world. A stranger soon to be friend Alex would lead me through that in Austin when he'd flown in from New York. This year I flew to Florida for his wedding celebration. I also had the chance to run with a friend on her first Spartan in her hometown in Chicago. It is the only race I've ever done with snow and ice to deal with.

Some of the media stuff still continues I suppose. I've been in some articles and am currently the ambassador for the biggest 10k in Texas, the cap10k. It seems appropriate I suppose because it's the distance I raced the most in 2019, 7 of them, placing in all of them and winning 2 outright, one on the road and one on the trail.

But the greatest racing story that I've gotten to live this year isn't that I finally broke a 3 hour marathon or the ones I've won but one in which at best I can be described as a pacer, really a spectator.

10 years ago, I ran the Decker Challenge as my first half marathon. I never thought I'd do it again as it was just supposed be a way to get to my one and only marathon. I mean I had a two year old daughter at home and I was 29, the body would be falling apart soon at 30. But I fell in love with the sport of long distance running and signed up for the next year. A little over a month before it, I got news of brain cancer but decided to do it anyway. Bibs are assigned at packet pick up and I randomly got bib 911, where both then and to this day in speeches I joked about how I didn't have to put the emergency number on the back, they put it on the front. It would be the first time I won my age group and PR'ed, a helpful thing as I absorbed the brain cancer diagnosis, realizing that maybe not everything goes down hill after you turn 30. They'd give it to me again upon request the next year but the year after that, a friend gave me the better bib, bib 8 for the kid born 8/8/80. I'd hit my PR out there once more and thought there would never come a day I'd stop running that race. It was so meaningful to me it would be where 5 years after my first one, 5 years ago, I'd retire the stroller. With each of those meaningful moments, I at first gave a glance to the thought that this race doesn't get better than this.

Still, the next 4 years I did not get to run it because I was now the President of the Austin Runners

Club and we put it on so it was set up and tear down. I got myself to believe that running the course a day or two before hand counted so that the streak would not break. But this year, at age 12, it would be Kiana's first half marathon. It is a tough hilly course and she had conviction on all of them. She never faltered and went from 121'st place at the first timing chip to 119th to 117 at the last one to 115th place over all and first female age 19 and under. She did this in a time of 1:40.26. I'd spotted her a minute a mile on her first half, she didn't need that. I've had so many good times out on that course and each time I thought it can't get better than this. Yet, each time does and let me be clear running besides her, telling her stories trying to encourage her while pushing her, just watching her grit, well this was by far my favorite.

If I ever get back to writing too much on here, it's likely because cancer has become a bit too disruptive again. I'll still write here on occasion, upon relevance but as long as I've got breath and love and hope and once in a while wine or tequila, I promise to live a great story.

Smell the Color 9

"Sometimes finding you Is just like trying to smell the color 9"

Remember, remember the 5th of November. 9 years ago almost to the minute I was having a grand mal seizure in the middle of a coworkers birthday lunch. And so the brain cancer journey, in its official capacity would begin. A cancerversary is like a birthday, what we celebrate is our delivery when we'd been developing before that but conception is a harder thing to nail down for most. I'd compared getting cancer to being born before and it still feels apt, oddly enough for a guy who never celebrates his birthday 8/8/80 but loves the number also never celebrates it but not one November 5th has gone without acknowledgement.

Everyone of them has gotten a blog entry. Last year it was a big party at my house, an above average party because I'd beaten the median survival rate of 7 years and got to my favorite number, 8 years. This year the effort of today is not as much of a celebration but as an acknowledgement. Everything that I had some say in today, everything I dream up was quieter than usual. I am hoping to play ultimate, the sport I rarely do anymore but just as pick up. I'm having lunch with people who have been there all along, some of the first to show up at the hospital. I'm actually getting very little time with Kiana unfortunately due to her being on the longest day field trip of her academic career but even when I got that notice, it kind of felt 'appropriate' as the day this all started I barely got to see her because I was trying to 'protect' her from the hospital. I am having a basic dinner where the company is more important than the meal. And I'm getting a run in. In some of that there will be some tension but that's the crux of cancer isn't it? Some of your bodies cell not doing what they are supposed to, trying to hill its host and isn't some of the body fighting against that and somewhere we put together medicine and hope and will power daring to dream that the right balance of the universe plays out?

9 is an odd number. We don't ever quite make it a big deal as multiples of 5. 8 is my number, 7 is often referred to as the perfect number. Still once I got someone a card about how they were a 9 in my book, they took the compliment as serious because it acknowledged that imperfections are acceptable but that it was better than even my own claimed number.

The reference at the beginning of this is a song which captures well how I feel. While it's someone talking about how they try to relate to God is trying to smell the color 9 , they realize that 9 is not a color and even if it were you can't smell a color. It would be incredibly dishonest, perhaps delusional to not talk about that there's rarely a day and certainly no November 5th where I make peace on that I'm one of the fortunate ones. I don't understand it. I've watched someone who beat me in a short race die so it's not the speed. I've seen someone who runs Boston every year have to go back to Duke because it grew back and they have to do more check ups so its not the long distance running. I've seen someone who makes any positivity or hope I have look dim compared to the light they shine who is having to go to Europe for experimental treatments because they aren't approve here. I've seen children pass away from this much less people who adore their children. I appreciate the kind thoughts that friends share of why the universe has been this kind to let me stay alive. I get annoyed at the platitudes from strangers about it. Ultimately I feel confused thankful and guilty when I acknowledge that I'm still here.

In the last few days before this I ran 3 races in 8 days. I won two of them, the other one I was running with Kiana where she Pr'ed but I can't decide what my favorite part of that was. Was it her holding speed or the fact that despite having a head cold and not sounding well she didn't want to slow down? She would trip about mile 8 and get up and run with tears. And for the first (and maybe I hope last) throw up shortly after crossing the finish line. I said with as much conviction as I could muster... sometimes that's supposed to happen but the pictures showed what I loved, that we somehow run perfectly in stride. I see her stubborn competitive pride get her places on runs. I also see it get her in trouble at school and with me. I don't try to change it, just channel it because maybe it's part of the reason I'm still alive.

At that same race, I got to cheer on participants as they finished in as they were participants in our distance challenge which is exactly what it sounds like, a challenge to go the Distance. Elaine is one of the participants as are a few dozen friends and a few hundred strangers. The only win for most of us (and I am doing it this year because Kiana is) is just completion, knowing we held on for a commitment. It's a few months and 5 races but you have to be there and finish. The lines aren't quite as clear with cancer but the methodology rhymes.

I'd attend a day of the dead fundraiser concert a couple of days ago. I got my face painted. In display of my manliness, I was the only adult male who got his face painted. Everyone else was children or women. The artist asked me what I wanted and I said I trusted her. She asked for my favorite color and then went with it, asking if I wanted a full face paint or just a half which she described as more traditional. Again, I repeated I trusted her and she went with more traditional. She would add a spider after having it confirmed that I wasn't afraid of them. When I saw the picture afterwards as November 5th grew nearer and I struggled with how much to embrace and how much to let go, I wondered if this was what I was 9 years later, half gone, half living. The tumor, diffuse astrocytoma, has often been described as like a spider with no clear idea of how many legs it has that sometimes grow or become independent tumors of their own. It was tempting to sleep in it even but you know it stains the sheets and one should leave staining the sheets for nights of sex, drugs and rock n roll not just made up stuff. I washed that off even if I can't cleanse all of the tumor, I am glad it's disrupting my life right now less than it has in times past whether or hat's not the case in the future. Someone asked me if I think I'm winning. Well, I think it's past the 9th inning now, so let's just go with that I won but all competitions, games, life have to end at some point. And no one will ever be able to make the case that I didn't enjoy it, share it, and try to contribute while it lasted.


I can't believe I'm still standing. Then again, I haven't been standing still. I've been running, living, loving. I won't deny all the ways cancer disrupted the course of my life but I'm competitive so I've tried to disrupt its course. It all started a long time ago and being a guy with a damaged memory, I don't remember it all. Nevertheless, I am absolutely thankful that the story is not over.

The Windmills of Your Mind

Round 
Like a circle in a spiral Like a wheel within a wheel
Never ending nor beginning On an ever-spinning reel
Like a snowball down a mountain Or a carnival balloon
Like a carousel that's turning Running rings around the moon
Like a clock whose hands are sweeping Past the minutes of its face
And the world is like an apple Whirling silently in space
Like the circles that you find In the windmills of your mind

I have not written here in two months and one day. I don't know that I have a great answer as to why not. I mean maybe I finally found the right balance of sex, drugs and rock n roll to where I don't need the therapeutic blogging as much help. There have been some good days since that marathon that I pledged I wouldn't write what the time was (and I'm keeping that pledge) but I will tell you that something I loved from that race that I said my favorite start line was the next one and so because there was one for the half at 13.1, one for the 10k at 20 and one for the 5k at 23.1, I restarted my watch each time and actually did not know what my total time was until I was at the last finish line. That was a good life lesson. 

Cancer is not nor will it ever be irrelevant to my life. I mean I'm not kidding myself as to that it still scares me and that running and how cancer is related will be tied to my story at all times. I'm honest with that; it is why about a week after that marathon I came back to do the brain power race, a race I've done in all 9 years of its existence, the only person to do that. I took 3rd place on the 10k, hurting and sore that at 39 I'm holding a faster pace than at 31 but it also hurts more. Still, I always cross finish lines with a bit of a dance pep in my step. 

There were some non cancer running, watching my daughter Kiana start cross country. Elaine, Kiana and I are all doing this year's version of the Distance Challenge which will include Kiana's first half marathon. It's a loop that was my first half marathon in 2009, 10 years before Kiana's and that Kiana has done before in her last race in a stroller in 2014, 5 years ago. It's a big loop around Decker lake with some serious rises and falls that make you think what the hill quite often. 

And then there was the Livestrong 5.12 Brunch race two weeks after that got me shouting I got nothing but love for you baby. I won that and then enjoyed good food and drinks afterwards. Still unlike every other picture of me that has occurred for quite a while I wasn't wearing the Livestrong wristband. There are still plenty of shirts and decorations but that Distance Challenge comes with its own wristband and I traded a long sitting one for a temporary one. 

It was a clean moment but not necessarily a clean decision. Livestrong is focused on some re-branding right now and has changed headquarters down to its resizing. I know less of the staff as well and some of the specific ways they helped are not as much a part of the program. My loyalty has always been to people not some idea but I still look to them and feel life and love. Perhaps its just coincidence but within a couple of days of removing it (and I still have it in a very safe and important place, the Grand Canyon box) I happened to be running by the park where the Livestrong video was filmed and every single bit of playground equipment was being torn down. Within a day of that, Livestrong staff emailed me that they were throwing out the banner of the picture of me and Kiana because it wasn't really the rebranding but they felt bad throwing it out and offered it to me. I politely refused as I'm not sure what I would do with a gigantic banner of me... But it was odd for it all happen within a few days of each other. 

This was also the first time ever I missed the Livestrong challenge since I got the cancer diagnosis. This was due to being at a wedding in California. I had signed up and the hardest part of missing it was not missing the bike ride but missing people who come into town for that. Still the last few things I did before heading out of town was hearing someone speak that was in town for a health conference that I met at a Spartan due to both of us being in the media and then going and having lunch with some of the Livestrong leaders that were in town early. I had a moment who was doing her first century at a Livestrong Challenge and maybe felt I would be properly represented... at least until she told me she did it faster than I did mine ;). The smartest thing I ever said was in that video, you have to work on the relationships you want to keep. While I was in that wedding in California, I met with friends from half a lifetime ago. I can live and die with relationships being the primary driver of my life. But that video reflects on my divorce so obviously relationships themselves can die. 

I spoke recently at the University of Texas encouraging students to run for the 7th year in a row. I took out some of my lamer jokes and put in a couple of new ones and some nods and it went well. I've gotten to speak at corporate events, elementary events, middle school ones, high school ones, medical ones, cancer ones, running ones but somehow the college ones are high in the pecking order because college kids aren't easily impressed nor particularly polite if you aren't delivering. The day before I won a Halloween half marathon and I cracked the joke that other people had costumes but I had dressed as the winner. Not really that great of a joke but I had made enough other good ones to where it got some laughs. 

I recently got announced as the ambassador to the Cap10k, in it's 43 year. I'm in full page ads and press releases and lifesize posters. Two years ago it was an Olympic silver medalist, last year it was a gold medalist and this year they went with an international man of mystery, me (the mystery being why they chose me). Last year, despite its long history, it was the first time it fell apart due to rain. I went out there and helped clean up because isn't that what you're supposed to do when people you care about are in the middle of a mess? There's something about what you do when things are rained out and how you handle it afterwards that matters no? The honest truth is I hope this year is awesome and somewhere the race and I can rub some of each other's come back kid attitude. 

I've joked about retirement for years. Elaine mocks that because by that I mean trying to figure out a way to get back to typical employment, not how most people define retirement. I say well in April maybe as I pick my nose on a poster of me and have some fun with it, this public eye thing will cease and it will all come full circle with it being in the first and biggest race I've done in Austin. It would only be a few months after where the first place that invited me to speak (UT) and the first race that invited me for a paid speech (Pocatello) have had me back. I want to believe that it's all come to a full balanced circle, romanticize it a bit. I listen to the song quoted here at the beginning and realize its never ending nor beginning on an ever spinning real. I think I've gotten plenty wrong and plenty right and maybe in the next spin at the right Leon spot I'll improve, the circumstances will line up. It took me almost a decade to hit my initial goal time in the marathon and I've still never gotten good weather for it. A lot of the more important things in life are far more complex than putting one foot in front of each other, or so I try to say in a simple and practical fashion.

But that of course is not how the universe works. I know just by watching Kiana grow up. I've long said parenting kept getting purely more fun from birth but that would come with a break. Jr High the brakes have come. I'm not saying it's not still fun but there are moments where I am remembering some of the actions and attitude I took towards my parents in Jr High and boy is karma real. 


Keys that jingle in your pocket
Words that jangle in your head
Why did summer go so quickly?
Was it something that I said?
Lovers walk along the shore
And leave their footprints in the sand
Is the sound of distant drumming
Just the fingers of your hand?
Pictures hanging on a hallway
or the fragment of a song,
half-remembered names and faces
but to whom do they belong?

Still I can't help but reflect on the last two months even if I've been less faithful about writing some of it down. I assure you it won't be as long before I write again as the one day that gets faithful acknowledgement is just a few days away, the 5th of November, the day this cancer journey started. This blog won't be ending anytime soon I hope, the memories will keep coming but fading too and the windmills of my mind will take the wind to move and hopefully produce useful energy. I'm thankful I still have a mind, a heart, a soul and thankful they keep finding ways both to wake up and rest and be restless on some days. 

The Unmoved Mover

We all have ways to explain the universe. Many of us find our own ways adequate enough to at least get some sleep at night. But I have long struggled with the perception, projection of the unmoved mover. Aristotle started it trying to make sense of the simple laws of motion, that somethings move us but where were they moved from and ultimately concluding that a logical reasoning deduced an originator, a god/God that somehow was exempt.

I see this in my cancer world ("my cancer world" ... I wish I could explain that better) as we survivors deal with our mortality. Humans, the vast majority of us, are in denial of it; something I've seen on deathbeds. The unmoved mover is sometimes death itself, something that the fear and stakes we put on it doesn't seem to be with the force itself, or is life the force. Others have played with a concept that perhaps it was all one long cycle and therefore needed to be no originator; I've tried to never accept that as that's literally circular reasoning.

Why do we let the inevitable like death mess with us so much? And when we're truly honest for most of us is the thought of our own deaths or the thought of others harder to take? Why are we so often moved less by so much of life? I have turned 39 since the last time I wrote here, which now puts me less than 1 year away from the age, 40, that statistically I was not likely to reach. I avoid hubris and I don't want to be Icarus burned especially in the Texas summer sun but the even though the sun is also a star, the night ones seem closer now, a little brighter.

I've been doing a few more things in the cancer world perhaps because I'm a little less scared of it, some in groups, some one on one. While I was in Wyoming with TNT, I made a decision to make a conscious set of thoughts on a particular point in a familiar route that I've done at least weekly since returning. Tonight I am in Pocatello Idaho just having finished the speech of my favorite start line which like my favorite race is a simple answer, "the next one." It's the first marathon that invited me to speak after all the media and there was I talking about the race I won etc, and how I was focused to make sure that I die trying. But when I came the first time I came alone with no ability to drive. This time I came with my wife and I had friends here from back then and since then from other places. I took a rental car to the state fair the race director had been kind enough to take me to last time. I drove to a part of town to just walk around. I gave a speech where I didn't focus on my times or my wins but on just realizing that continuing to get to start lines is why it matters.

The last time I was in Pocatello I would qualify for Boston, PR. I didn't sleep well the night before. In fact I got up and wrote half this blog entry in the middle of the night to try to clear my head. Shall we call it progress that I'm writing this one before the race even starts because I just shared a conversation that for the vast majority of us, in regards to races, the journey to the start line often matters more than the journey from the start to the finish line of the race itself? I spend more time in my speech talking about why I put off brain surgery to run a marathon than I do talking about the 26.2 miles, I spend more time about why and how my mom started running, about how and why I started running with Kiana in a stroller than I do about the Gusher Marathon win. So suffice it to say that while there's a bib on me and my body is physically capable I'll always be competing, I'll always be trying to PR but right now I can't imagine ever writing about a finishing time in here and I'm going to focus on the start line. It feels particularly appropriate here because I found out after the speech that while the start line remains the same, the path to the finish line is not.

I do not think there are any unmoved movers, at least not any healthy ones. Death is an unmoved mover but death is the absence of light just as darkness is the absence of light. Its not it's own entity. I think even the creator of the universe has to be a moved mover because how could he create the beauty of life without being moved? Perhaps I'm romanticizing it too much but if someone messes with me and the connection isn't moving them back... that's not a dynamic I want to be a part of. I took pictures of some clouds from the plane coming in and thought that I've looked at clouds from both sides now from give and take and still somehow it's cloud's illusions I recall.

I have only ran 2 marathons in the last 3 years, this will be the first time since 2015 that I run 2 in one year because somehow I've never entirely shaken being the cancer guy that runs marathons but I think my own speech today may have moved me to  just focus on the start line and that retirement already came when I broke 3 but that retirement just means on the clock. So at least for tomorrow's marathon, no matter how good or how bad it goes, in this blog which is the last thing I intend to read before I die, the place where the most important things go either straight written out or have nods that I hope trigger the right confessions into my memory, whatever time I hit tomorrow will never ever be written out. Every marathon has a theme song I listen to as I prepare and this time it's the one from Hamilton Hurricane due to a couple of lines:

In the eye of a hurricane There is quiet
For just a moment A yellow sky

I'll write my way out Overwhelm them with honesty 

And the honesty is that what matters about tomorrow's race is that I'm still here, still somehow getting invited to share a story with strangers and with friends and more importantly still getting to live it.
Appropriately enough shortly after finishing a speech about the start line, I head to Wyoming immediately after the race where the exercise that conscious thinking came into view with a little bit of good luck. I've been running marathons for nearly a decade now, just a little longer than I've had cancer but in dealing with both, with life, with love, I'm going to try to take it as fine wine and let it improve with age, take it in and let it move me.

Emergency Contact

I just got back from a very intense conference at MD Anderson that was entirely for Brain Tumor

patients and their families. It apparently happens every two years which means I could have attended a few times now but it had never gotten on my radar. I say intense because of several reasons. There was emotional overwhelming because some of the people who are big advocates there shared early on how lucky I was still to be alive. There were several patients there some with staples and/or stitches still in their head. There were some brilliant doctors. There were stories, some with little I could relate to outside of the cancer experience and some where parts of our lives seemed like part of the same poem. There were others I thought maybe I could show them poems you read further down the line that even though I was a first time participant, the brain tumor experience felt more like I was alumni.

I suppose I was already prepared for this to be emotionally overwhelming as I was packing I wore my irreverent shirts that came along the cancer journey. I wore the seizure one of when my language functions freeze with the caption "sometimes I stop to think and I forget to start again," my going into brain surgery one (it's not rocket surgery) and my leaving one (gave him a piece of my mind) each day. The tumor hasn't faded but has also stayed stable and turns out the humor coping mechanism still matches. Hope I've always declared is my 4 letter word and the conference was titled "Together in Hope." 

There were stories of cold hard facts about longevity and prognosis, sometimes spelled out but often read between the lines that for a lot of these 120+ different types of tumor there is no known cause and no known cure. There was the advancement in science, some of which I've been privy to as it's developed about the gene mutations that now help predict things better. There was more coverage than I'd ever seen about neuropsychological evaluations and cognitive impairment and function. There was actually a spelled out line by line item of somethings that seem to increase the median survival rate for participants divided into a variety of categories about emotion, diet, exercise, mental and spiritual (I kid you not without knowing them I was doing all but one on the list; the intuitive force is unusually strong with me). There were general presentations, some breakout sessions and one of the ones I picked out was how to read an MRI better; I haven't taken a CD home in years and I don't know if I'm more or less tempted to do so after doing that. I even got to practice drilling into a skull with the tool that was used on me (on a fake skull) and doing brain surgery with a tool though I'm not sure whether or not that was the one they used one me (on a grapefruit)

But invariably my favorite part was the human part; the groups where we sat and traded stories. It's not the first I've sat in groups like that but for a guy who is as obnoxiously chatty as me, I usually sit through and don't say anything. I've got this place where the story has poured out plenty by hiding in public and I get to give it in public places (though that's got a little more polish) but in these circumstances I listen and listen and listen. There were groups for people with children, young adult cancer survivors and gender specific groups. I primarily focused on the mens one but was reticent enough to share to where I actually got nicknamed "the quiet one." Listening to people who also shared jobs lost, marriages broken, someone else who had become a single father, seizure stories, beating the odds stories, clinical trial stories and invariably friends they'd made along the way who were no longer on the path because their tumor grew and took their life just made me more attentive and more quiet. There were people there who genuinely surprised me with how much they valued not dying no matter what the quality of life; I don't share that value but it was good to hear it. 

There was another element that was a focal point for me; I was one of the few people who had come there alone. Most of the guys younger had come with their mother; only one with his wife. Most of the guys around my age or older had come with their wives or significant other. There was a disproportionate number of men in this group. While brain cancer is disproportionately male, it isn't as much as it was at that conference. A far bigger percentage of the women who had come were there on their own. I didn't know what all that meant and I'll let everyone draw their own conclusions but for me I wondered if maybe you know I should have brought one of the meaningful people in my life... I didn't give it much immediate thought as it wasn't correctable at that point but it did stick out. 

But it kept reflecting because another point stuck out. As people told stories organically, they would praise their doctors or medical teams a lot or tell points about their jobs or their circumstances. The reactions would be like "I'm sorry" or "what a great decision/outcome" or "that is a great doctor." It was not intentional but somehow my stories always ended up revolving around the ways people helped me, from walking me back into hospitals, running with me, driving me, flying out to Duke, helping with the medical bills. The response I got to a variety of stories almost word for word was "You have such great friends." The fact that I'd put off brain surgery to run a marathon came up but it's speed did not nor did the fact that I won a marathon pushing a stroller. It was refreshing to have it be where I was just a runner who ran to escape from cancer not a cancer guy who ran. And this, this was made possible my friends. 

Appropriately enough, the conference was about that. I had dinner with a friend on Friday after the first day who has his own brain issues. I was staying and hanging out at a friend's house who had been part of the fundraising efforts from the Ultimate crowd. I got up and ran 20 miles with a friend. Saturday night I had dinner with a relatively new friend from the Wyoming crowd that when someone asked if she was my wife who I'd been talking about pointed out that I was old enough to be her father (she's 23, I'm 38...). 

Still, hanging with her while thinking about the you have such good friends remark made me think about a conversation I overheard while in Wyoming. People were sharing some break up stories that coincided/overlapped/might have contributed to while cancer. One was relatively recent with the person they were breaking up literally moving out while they were backpacking with us. It ended up in a conversation about how at least a couple of them had kept their ex as their emergency contact. I didn't say a word but they explained that in that scenario that would be the person who knew the most. They however genuinely believed that their emergency contact was not and perhaps would never again be a regular part of their life. 

My emergency contacts and executors of my will have always been two friends; part of that is they are literally people with lots of financial information from their degrees (MBA, Ph'D in Math) but somehow I want to believe that their being close but not as close they could have an easier time making objective decisions or respecting my wishes. This was something that was shared at the conference as being clear with people. 

Nonetheless, the thought I left with was that if the story of my life is "you have such good friends," that's a life I'm rather pleased with. Today started with an old friend sending me a picture from exactly 10 years ago when we were playing ultimate in Boulder. I was a few days from 29 then and I'm now a few days from 39 and I like to think I haven't changed much in looks but a good chunk of the guys I played with are still my friends. Every single friend I called from the hospital is still in my life. 

On the better part of 3 hours on the ride home from Houston to Austin when there was cell phone coverage, I spent the vast majority of the ride on phone calls. Before brain surgery, I had gone on this tour over the places I lived and said hello to people from stages in life. I suppose like a tour of life or a funeral, it was the poignant moments and I wanted at least one more. For better or worse since then, the relationships that matter to more now are the consistent ones. Life doesn't always give you too many luxuries; I'm not naive but the friend who I ran 20 miles with we once had a conversation about when have you made enough money and he cited a study about how once you've got the basics covered and enough for a few frills, life satisfaction doesn't actually go up in proportion to huge wages. It stays all but flat but the improvements to life come from how many connections do you have that you can call at 2:00 in the morning when something goes wrong. I am pretty happy with that list but I didn't want to save it till 2 in the morning and spent from 12-3:30 or so just chatting about sports and the weather and... just things good friends talk about and saying thank you for the things from so long ago but also for how we hung out relatively recently. Any of those calls could be emergency contacts but I was glad they were just regular contacts, all people I had seen relatively recently and would see again soon. There's plenty of people I love to party with that I'll have a shot with late in the night but it's the people you could share the silence with, perhaps with a glass to share in the all but quiet, thats an A-frame picture right there no? 

I'll join some friends for a run in the morning but I still may share a glass or two tonight. There's still plenty about my brain tumor that no matter how much hope still lies in front of us, there are lots of answers where we don't even know the question. I don't know or where when I'll have my next emergency but I'll keep trying to never pass up the opportunity for good contact. 

The Backcountry With No Backspace

I've not been back long and my damaged brain knows it isn't adequate to describe from where I just returned. Was it an adventure, an escapade, a feat? A few months ago, I had the privilege of signing up for a program called True North Treks, the particular one I'd signed up for was for a week long trip of backpacking in the Wind River Mountains in Wyoming.

The trip started with us arriving, one or two at a time from places from opposite coasts and many places in between to Jackson Hole, Wyoming. As we sat in an airport lobby explaining motivations from remarks about being directed there by a therapist to just a desire to go the wild, the only common thread was that we were young adult cancer survivors (23-39 years old, yes I know I'm pushing it).

From there until the end, unimaginably, unbelievably, all it did was get better. The drive alone from Jackson Hole to the Wind River mountains had a change of scenery where someone said that felt like driving through a variety of states because each of the landscapes every few miles had its own beauty. When arriving at the trailhead, we set up camp and called it a night. With our own two vehicles there and those of another group, the reveal of what was to be was nature flirting with us, where you can just see someone's eyes, not even able to figure out the color when the rest of their internal and external beauty has barely winked at you.

The first day was just climbing and climbing. Theoretically it wasn't that long but when you're wearing the backpack with all of the week's food and haven't worn a backpack in forever and haven't gotten used to the elevation, I appreciated the guide's advice that it's a marathon not a sprint. Somewhere the marathoner in me wanted to correct that we weren't covering 26.2 miles that day but then again I didn't have enough lungs to spare to say it at the time. Still, we hit into a natural stride to where conversations were possible at least in short spurts.

But then again, I get ahed of my myself, each day would start with things that shall we say are not my style. There was yoga, poetry and mindful meditation introduced shortly after we woke up, setting the pattern for what would be each day. I was committed to trying it all honestly, to being flexible (at leas trying to be since well I still can't touch my toes). The counselor had a voice and genuinely believing what she was proclaiming as I sat or did downward dog on my yoga mat, I questioned what exactly I'd signed up for.

But after camp was set up and water was refilled and bleached, there was conversation. There were the simple elements of getting to know any human better, hobbies. There were the transitions into the cancer connections from the simple elements like dates and diagnoses to the complications. One of us was diagnosed at 9 and so cancer was really all she knew and it was her normal. There were comments about body parts and changes, job changes. There were relationships started because of those, some affirmed, some complicated, some broken up. Cancer is an unnatural messing of the system and here we were trying to make sense of it in a natural setting which ironically enough was foreign to most of our daily lives. It kept getting called the back country. Somehow the conversation about relationships moved to online dating and while that is an experience I never encountered, there was a line said that still sticks with me that someone was trying it but they had a commitment to doing it only if they didn't use backspaces. That was the approach I decided to use for the rest of the trip, no trying to erase, less hesitation, more going forward, at least for a week.

It made the thinking in the quiet spaces both easier and harder. It made the yoga poses less complicated but the mindful meditation more complex. The flowers stuck out more, the sunsets and sunrises were more colorful, the constellations and shooting stars more personal. The breaks seemed perfectly timed on the hikes. The persons and the mountains competed with each other for which seemed more grandiose to me. There was my tent mate who at 23 seemed more open to ideas than most people ever achieve. Yet in all that thinking he was always there to help someone across a river, running in if they slipped.  There was the 5th grade teacher who learned that how we tell ourselves stories about our lives can be productive or counter productive who focused on capturing stories with a camera more than most. There was the 6th grade teacher whose ridiculous idealism about human nature is exactly what I hoped my daughter picks up in middle school. There was the person who was still actively in treatment, struggling with tiredness but who instead of doing it alone helped everyone recover by leading stretching exercises.

There were the guides whose zense of humor and quiet balanced each other out as they watched for our safety and caught fish that we could cook on a stick. They would find the roses, the buds and the thorns while telling the jokes and playing the games that seemed to both distract from the pain as they helped us embrace the suck. There was the fitness trainer who worked for a cancer organization that under estimated herself even as she seemed to have energy to go up and down more to get pictures. We were all looking for a little more balance at different levels of self awareness. There was the girl who had genuine opinions about everything but the questions showed an openness to changing her own as much as those of others, other than maybe that her group had a better cook than ours. But unguarded opinions and questions without backspaces was exactly my style on this trip. And there was the friend whose therapist recommended it who kept resenting her therapist less and I kept appreciating her sense of humor more. It was the counselor who could mess with dynamics the most as some of her exercises were alone, others with the group, some still, some in motion, some talking some in silence. At first I thought it was to have cross appeal but I do wonder if it was almost to ensure that someone had some in-congruency to rewrite our oversimplified narratives. I am generally sorry most times when I make anyone feel uncomfortable but very thankful for all the ways this trip messed with me.

There were snowballs and cold water plunges, napping on rocks, bathroom au-natural. There was bonding over mosquito face masks, the net squad. I genuinely don't remember the insects but I remember the way some looked more like darth vaders and others like someone about to break into a store; surely one or the other scared the bugs away. There was beauty that I would call majestic but nothing other than the wind river's royalty could have made a palace with that much splendor. The week despite tough hikes and short nights since we stayed up star gazing everynight was flying by. There was genuine bonding with very early on the discussing already starting about when we were all going to get together again and another about which matching tattoos we were all going to get. I don't know whether or those will occur but it's shouting at the mountains hoping that somewhere down the road, a little further away we can still catch their echoes of us and of each other. We didn't speak in particularly loud tones out there but the mountains, water and wind will keep whispering back.

On one of the hikes, I found a horseshoe on the side of the trail. The day before my roommate had found some rusty pliers. Between the two, I made it a little safer. Everyone kept telling me that it was lucky with someone sharing that depended on how you hung it up. But I keep horseshoes as one of my yard games but it helped me redefine that maybe what it has in common with a grenade is that you don't quite get its full meaning till you see where it can be utilized. Just to be close to that beauty with that speed and power is something I will never fully comprehend but at least we had similar paths, that horse and I. We both left something we thought we'd come attached to out there and perhaps it made our path down both easier and harder.

On the way out, several of us tried to describe it and we all felt inadequate. Even as I write this, I am tempted to scrub it and tell you to go take it in but how could it compare when we had such great company? I mean we burst out into a group hugs and went around a circle sharing stories about each other to close it all up. I am back into the rhythm but still trying to share it here and doing some fundraising so other people can so in the future.

I miss the backcountry and I'd not take a single backspace key to the whole experience. I haven't had spatial orientation since brain surgery but somehow the sun and waterline and mountains were clear enough to where GPS was unnecessary perhaps why this is called True North Treks. I've lost some language skills from this but it didn't matter out there because it would leave anyone speechless. I've lost some memory skills but I have no confessions on what I don't remember. It doesn't matter that some of life might not have held in my brain because that scenery was one of those things that if you think about too much, your mind may get overwhelmed and so you absorb it and just let it sit in your heart and soul.

Gone but Used to Be Mine

It's not simple to say that most days I don't recognize me

It's not easy to know I'm not anything like I used be, although it's true

I was never attention's sweet center I still remember that girl

The above quoted line is from the only musical I've ever purchased only one song from. There are some I've purchased the entire album, some none and some several but this is the only song purchased from Waitress. She's reflecting on what her life comes from unexpected growth, in her case a child from an unplanned pregnancy. I was one of those and I've also had some unexpected growth that was life altering and as it theoretically at least is about to get a less regular part of life altering, I keep thinking about how the normal in my life has shifted so much. I say change is life's constant often but despite my good heart and lungs, even I have to catch my breath sometime when I sit and think about the last several years, the good parts, the mistakes, the variations. I had a goodbye tour before brain surgery; I didn't call it that to anyone but myself and most people heard the affection but it was also a whispered shout of fear what I said at the end of meals in places I'd lived: "I'm not sure if the guy going in is the same one coming out but this one loves you guys." I'm not sure I've yet acknowledged to anyone myself included how I don't recognize me on most days and somehow I still remember the pre-cancer, pre brain surgery guy. This blog is a faint attempt to do so. 


She's imperfect, but she tries 

She is good, but she lies

I'm so far from perfect there's no point in even trying to diagnose that. But there are moments where I realize the pursuit of perfection was an honest desire of mine. I was that nerdy kid who got the highest grade in the class, a 98 or a 99 and didn't care about the good great or it being the highest but about which questions I've missed. I don't know where I learned that but perhaps it's genetic because Kiana missed exactly one question on her standardized tests this year and she wanted to. know which one. Turns out now in the age of tech savviness I could actually look up all the questions and see which one she missed and what kept her from keeping a perfect score was appropriately a math question about absolute value. 


Now the amount of notes and calendar appointments and spreadsheets I keep makes me wonder would I have been a suma cum laude graduate with two degrees or valedictorian if it took anywhere near this much effort? I had a roommate who studied and studied as he was from Argentina and still working on his english and at the time was not getting as good of grades. He's now got a Ph'D but I gotta say there was probably never a point where his grades weren't more honestly earned. 

But speaking of honesty, I often say I have a lot of bad qualities but pretentiousness isn't one of them and I assure people at all levels that I'm never going to lie to them. This is perhaps the biggest deception I share. While it is true that I never lie in telling anything that's because lies take memory to recall and when your memory is this damaged... the truth was better anyway. But with general memory and the facial recognition issues I have, I lie to people all the time who wave at me clearly knowing who I am and I have no clue. The worst of these perhaps is when I am carrying on a conversation with someone who I've clearly talked to them but I am asking questions trying to figure out who they are (I have a decent batting rate). But I've been lying to their face because I don't recognize it and I wonder how many people were able to tell. The way I remember so many people is through distinctive marks or piercings or tattoos and others I study them on social media in a way that would be creepy in person. But I've deleted so many people on social media because I'm very overwhelmed by the strangers that keep track of me because of positions or media and thoroughly underwhelmed by what feels like replacing many likes and heart and shallow connections for more serious ones. 


I am never quite sure but there is not a day where I hope that these aren't good tries at life. 





She is hard on herself

She is broken and won't ask for help

I'm onto my 5th year as ARC president, a cause I took on this damaged because I believed the

running community was a huge component in saving my life. Like the fundraising I've done for Livestrong or Duke or Brain Cancer research, there was this responsibility to pay back. On Father's Day Kiana had worked and earned some money and kept insisting that the money was to be used to buy me steak. I told that story a few times because she wouldn't let it subside. Someone gave me a gift card for a steak house and Kiana was impressed at one of if not her fanciest restaurant experience. Like all of my other faults, I don't know whether encouraging or discouraging avoiding them will be particularly productive. On the cancer side, I still try to pass it forward. I still go to hospitals and hospices and funerals and a fair share of them on my own. Along that line of being honest, I am unclear as to whether having let Elaine come to a few is progress or adding more. I'm still broken and still don't want help.

We as a family have been playing games like Hanabi and Codenames more, my two current favorites. They are great games, games I would have liked at any point in my life but were just introduced later. They are cooperative games where you're working on winning together on beating the game, the other players aren't your competition. But they are also words that necessary skills are language and memory, the deficits I feel most painfully. I think there's times I've frustrated both my wife and my daughter at how the game is playing out. I've told them this but without literally being inside my head, I am not sure anyone could ever understand that I'm desperately trying to beat the impossible, a guy without brain damage.



She is messy, but she's kind

She is lonely most of the time

The local ARC election made me realize some of the gaps in my leadership. I took over an organization that had its own gaps and many of those improved due to good focused teamwork. However, there were some things I missed in the mess, some inherited plenty of my own making. I was genuinely surprised at how mean some people were about it, with some making direct remarks at my wife and my 12 year old daughter. I've tried to respond in emails and messages that have kindness and are above board but I am not in denial that some of the damage is done. Some may be irreversible like any damage but as a guy with a scar on the side of his head, I know healing is not always a clean process and hope that we can make some progress there.

Perhaps the very writing of this blog comes from summer's loneliness. Summer ends up being some of the happiest non productive times because Kiana's not in school and so we have a lot more adventures once she eventually gets up. But part of the summer is also the toughest time because she's gone to spend time at her mom's house. Almost invariably summer time is when I run the most because well I have more time to kill. However, until this year it was also when the dog and I would the longest walks in the woods. Not too long ago they were longer in distance and in her more tired years they were longer in time as we were talking slower. I keep staring at the dog door or where the dog bowl used to be and getting watery eyes. We moved a huge percentage of the decorations around to make that focal point shift and changed pictures in the frame but my memory, thank God, isn't that easily fooled.


It's not what I asked for sometimes life just slips in through a back door

And carves out a person and makes you believe it's all true

A friend from college recently asked me to help them as they train for their first half marathon. Another who hadn't ran since college just finished their first after some guidance on which one to pick. Neither remembered that I ran in college. I was also on the track team from 3rd grade through high school.  I've played some sports and been part of clubs  Like most kids, I had many interests but while I was in band in middle school and high school, running has been my most consistent side gig if you will. Yet because I was the nerdy kid that's where anyone who wasn't on the track team remembered me. My diplomas or academic certificate never once hung on a wall and yet tropies and medals are displayed in almost every room in my house. The story of the guy who put off brain surgery to run a marathon and who won one pushing a stroller are an identity that still exists and it's embraced me or is it the other way around?  I even had a running themed wedding less than a year ago. I both love it as a place for friends and family and as a coping mechanism and as a place where brain surgery didn't cost me losing a step. 

And now I've got you And you're not what I asked for

If I'm honest, I know I would give it all back

For a chance to start over and rewrite an ending or two

As I sat and decided whether or not to have surgery, or any major life decision, I generally try to not look back because time travel is not possible and unlike little life decisions, there's not room for correction. But I hear cancer survivors talk about the things that have come out of their disease or its treatment that made it worth it to them. The awareness of mortality shifts lives often and the brushes with death provide darkness in the painting on human eyes that are often searching for light. But I still remember the guy who was playing ultimate then, a government worker with his own office. The music jammed while I was doing paperwork not while I was pounding out miles. I wasn't running as much and TWICE tore my suit while bending over because it wasn't quite ready from the college days to the adult days to quite back that ass up. Some changes would have come from aging and

people getting married and having kids and general adulthood but it wouldn't have been this dramatic. I love the new stuff like the Spartan I did this weekend next to my wife but I also know the Spartan came out of the media and an invite out of then. Elaine and I did it together and this was one where we did it all on our own just quietly side by side. There something comforting about it being just to do it with each other (there was also something comforting about finishing at the same time as opposed to last year when we did it separately and she had a faster time). In the Cowboys stadium, maybe, maybe I would have heard of this then too and wanted to do one in a place where it's fun to be an athlete not just a spectator. This is where my father in law most impressed me in giving me Cowboys paraphernalia as a gift once. The day is not likely coming where I'm gracious enough to return Washing Redskins gear. 

Would I have been better to not have the surgery and risk death earlier but a sharper brain longer? I'd be less known by a disease or a forgotten pastime of running. I don't know but somehow whether better or worse, if I'm honest, I'd give it all back just to have more of the writing up to me. There is a distinct irony to that in that the writing of this blog came out of all that but Elaine was unimpressed with me when we first met because she'd read this unedited blog and joked/thought I was just a guy who napped and blogged. I'm not sure I've corrected that impression but she's read other writings from past days where it's a little sharper both from better language days and more editing. Now the editing about my life is from other people sometimes editing what I actually wrote or what's written about me. 

Who'll be reckless, just enough

Who'll get hurt, but who learns how to toughen up

When she's bruised and gets used by a man who can't love

And then she'll get stuck

And be scared of the life that's inside her

Growing stronger each day 'til it finally reminds her

To fight just a little, to bring back the fire in her eyes

That's been gone, but used to be mine

Still, I know I'm not fully gone. The weekend before I did a scavenger hunt. The game changed from when I did it pre brain surgery. It was app based and Elaine and Kiana and Troy were having to figure out a lot more of the clues. But some of the ones they couldn't get because they were in a construction area that was gated off. Somehow after they told me that's why they hadn't gotten it, we might have ended up with them somehow. It was the friend I've had the longest in Austin who was the best man at my wedding to Elaine. When Troy and I met, Kiana wasn't born and I was 25 and Elaine was 15. But now 13 years later, here we were as a team. I used to be competitive in scavenger hunts but the team names were always irreverent but now they reflect the desire to overcome those insecurities and are usually named "Smarter Than We Look." We won the scavenger hunt. Kiana and Elaine and I and Troy are in better shape than physically and perhaps emotionally and spiritually. From them it may well be true that it's mentally too. Three out of four ain't bad (I'll let you decide what the 3 is in reference too, people or qualities).

So yeah, there are tough days but there enough good ones, the majority of them to where I get a clue that the fire in my eyes keeps growing stronger each day and that things may be gone but the beauty of life, it's still very much mine.