Tuesday, December 6, 2016

Not Yet

As I get ready for tomorrow's MRI, I can’t help but think about why I shutter when they come since I am not afraid of dying or the results being bad.  But on days like the one before, the one of and and when waiting for results, when I'm perfectly honest, I know I'd be relieved either way of the results and I really don't know which one of the two would be more relief. 

In simple frankness, I despise MRI's. It's what told me I had cancer. It's where they took me too when I woke up on with a seizure on the side of the road. It's something that I'm legally required to talk to Kiana's mother every time I have one because of the custody decree. It's the last thing they do before we messed with new drugs or surgeries. But it is not the machine itself. In fact I fall asleep in there often. It's just like when you make associations with like a song or smell that it doesn’t take you forward but takes you back and with MRI’s all past memories there are at best stable and some very bad, I can’t really think of or remember any good MRI's so it's a traumatic flashback. However, with a smell or a song it’s momentary but with that magnetic resonance imaging it lasts a lot longer than a moment since I usually have to wait between 1-3 days for results. I’ve had my radio station in my car playing holiday music and the line that stuck out from Mr. Grinch was one I could easily sing or say to that machine, given a choice between the two of you I’d take a seasick crocodile!

I’ve long said that I’ve never once prayed to beat cancer, just to handle whatever comes with it right. I told a friend I run with, a political professor whose invited me to speak to his students about running and he said that he wished I hadn’t told him that because now he felt guilty about praying for me. But then again, I’m not superstitious but I am a little bit stitutious so me, the kid born 8/8/80 tries to schedule results as often as I can to arrive on the 8th just daring to dream my number won't betray me. When I told my professor that little bit of superstition, something I don’t usually acknowledge, he responded to my silly number wishing with a little faith of his own and said “Screw what you say, I'm praying for you.” We were chatting and while I did not type LOL it was one of the rare times I actually laughed out loud to a computer. Even MRI’s are better with a little bit of irreverent reverence. 

I’ve kept some of the same things I do every time like running but I changed some things like actively spending time with some people who I’d usually avoid trying to keep running but stop running away. I did cheesy little things like this week is the most lumosity I’ve played in weeks if not months kind of like when you brush or floss your teeth extra when you’re going to see the dentist. If I work on the neuropsychological rehab there’s no way this tumor could have grown! I tried to find happy silly little moment’s like listening to Weird Al’s “Amish Paradise.” The things that people do to get me to stop singing sometimes…

Still, today reminds me why I’m exhausted with the health care system or with the disease or some days they are hard to distinguish. Last month I had to deal with two phone calls to approve this MRI, between the two of them almost an hour to get a procedure approved. This customer service was rep was very kind and polite and so was I though I might have been a little more firm… Afterwards, I went for a solid track workout. Then the next day I got a card that my insurance had been bought out or absorbed or what have you with a new insurance card that was effective December 1st but that nothing should change except that it wouldn’t be continuing after January 31st and I needed to reapply through the government health care website… Today I got a call from both the MRI place and my neuro oncologist office that now my MRI wasn’t approved and everything might have to be delayed… I was more firm just as polite and got transferred, without exception each person having no clue why they had gotten me and me restarting the process with the last person me literally calling my insurance company and my doctor’s office and trying to get them to talk to each other with me on the line. After over an hour, 6 calls with 5 different people, the appointment for tomorrow morning and Thursday still stood, was re-established.

It is moments like these, days like these why I understand why the Hulk goes away to not be angry, why he avoids it, why he avoids people in that state. But it is also during those moments that I understand why the clothes get ripped. It is those moments where I remember that I’m the kid who grew up in a rough neighborhood; who knows that while I’ve never started a fight but I’ve finished a few. 

There are people who want to be held when they are in that state of mind, who want to put their head on the table and breathe and calm down. I recognize it it to some level and don't speed up. This evening is the slowest I've driven in months getting passed in many places and realizing I'm going below the speed limit and trying to speed up to it. But I also tried dealing with the aggressive emotions in a productive way and went to the track for 3.5 miles of speed intervals, at first trying to dissipate the anger but eventually just channeling it through running, through pounding on the ground, through music and pounding in my ears. By just coincidence of the iPod shuffle, I warmed up with a song about Being Good, how the lion belongs in the cage. Skipped songs once the work outs started, dealing with the emotions of it, thought about stopping at 2.5 and then Eminem's Till I Collapse Came on:

Music is like magic, there's a certain feeling you get
When you real and you spit, and people are feeling your shit
This is your moment, and every single minute you spend
Tryna hold on to it because you may never get it again
So while you're in it, try to get as much shit as you can
And when your run is over, just admit when it's at its end

I pounded hard and it was the fastest pace I'd kept all night and I thought well maybe it's time to admit that my run is at it's end. But I had planned for one more 800 and if there's anything I do is keep my commitments so I went out and the song that came on was of all things the Lion King's "Just Can't Wait to Be King." The last race I won of the year was a 10k last month at a zoo and both then and now fate had been nice enough to intervene to play at the right time as volunteers at the last water stop were kind enough to cheer. Then it was when I made sure to not do hubris and keep running until the actual victory arrived:

Everywhere you look I'm
Standing in the spotlight!
Not yet!
Let every creature go for broke and sing
Let's hear it in the herd and on the wing
Today though it was simply that no matter how well that second to last repeat had gone I was not yet done with the work so this creature went for broke to sing and heard it on the herd and on the wing. Turns our a song about how it's not yet time got me going further than admitting that my run is at it's end. Some of the anger will be with that machine tomorrow, some of the frustration but so will some of the good songs and the hope that it wasn't the immature lion that wins the day. I hope the win comes from the voice that says the finale, the arrival is at least not yet. 

Monday, December 5, 2016

Grown Up Child

Change is life's constant, they say. I've heard the more things change, the more they stay the same. Which one of those two is it exactly? I'm not really sure but this is the time of year that has become the unpredictably predictable one. 
I just finished all of my holiday cards. I've been doing this for a decade now, each holiday season I've had a kid cause she's cute ;). But the list has grown with very few drops since somehow life has been kind enough to let me keep most of my friends while getting new ones. Kiana does some of them, I do some of them. The postal service seems relevant for something besides bills. I'm cheesy enough to where as I sit there with stamps, I put them on and really hope that even though I don't see them regularly they are ones I share a little bit of forever with. Some of them become a little big embarrassing to me in realizing that I haven't put appropriate effort when I realize that the last time I talked to them was when I was getting their address. But with most, it is a moment to recognize and look back on their life and mine over the course of a year. 

For several years now, I've put a quote that I hope encapsulates the spirit of the year (though multiple people have pointed out I usually forget to put the actual year on there). And for the last 3 or 4 they've all been quotes from Doctor Who.The methodology is simple, I go through and grab pictures of significant things from the year, let Kiana whittle them down and then lay them out. 

The quote this year was "there is no point in being grown up if you can't be childish sometimes." Who that's referring to I honestly am not quite sure... because as I look back on this kid who is just 9 years old, I was still not sure which one of us is raising the other. Someone sent us our first two Christmas gifts for the years. I opened mine and started enjoying it day of. Kiana got hers and said well it's not Christmas yet so I'll just leave it under the tree till then. At that point,  it was fully confirmed which one of us was raising the other. That night we'd go to a social run that was post Thanksgiving and most of the options were pretty healthy, fruits, vegetables, nuts. Kiana got all that and I went for the chocolate covered almonds... Shortly after I wrapped the Christmas presents I'd already picked out for her and put them under the tree with full confidence she won't try to figure out what they are before officially opening time. And I thought I was made out of will power. 

But there was a pattern to the picture that I didn't realize till the whole card being printed out. While they kept highlighting our adventures, some established and stepped up (Spartan, speaking engagement, running races) and some new (her bicycle ride and her learning to play chess), they had one thing in common. Every single one of them was a local picture, at an Austin event. While we've had a chance to travel still and done races out of town again (including a Spartan and a 5k picture that were in the running to be chosen), somehow it was refreshing to realize that our favorites ones were right in our backyard. I often name my teams the scarecrows with the joke of 'if I only had a brain' but turns out maybe Dorothy was onto something that there's no place like home. It is the people you are open to share that with that mean more to me than just the big events. Perhaps it's why this year it's the most pictures there's ever been of me on my own holiday card, acknowledging that I was actually there sharing the events.

But it was also the fact that it's been a year where I've both loved and struggled with watching Kiana grow up. I've long said that my parenting philosophy was 'first you give them roots then you give them wings' but this was the year in which for the first time I didn't make Kiana a meal on the first day of school, she made it. It was one where ideas like me reading to her were so antiquated, where she was placing in the UIL chess competition, looking a few moves ahead. Those pictures of most of those events together were ones where I wondered whether I was trying to hold onto her childhood by enjoying rolling in the mud at Spartans or riding a bike with her just around the neighborhood with her. Yet those moments that to me harked back to childhood even if I hadn't experienced them were to her one more stepping towards growing up. It was riding next to her dad but trying to do it faster, getting to where she could do pull ups, taking him to a stalemate, reading books in 4th grade that he hadn't gotten to till late Jr. High, pointing out ingredients to purchase for her recipes that well he'd never cooked with, telling her about her school project while he pretended to check his email so that he could look up the words in the assignment so his smart phone didn't make him feel as dumb. Two childish grown up or was it two mature children racing, living, loving side by side was 2016. 

Some other things are almost identical to something that happened two years ago. Kiana and I did the Trail of Lights Fun Run. Two years ago ESPN was filming it and Kiana cried at the end because it hadn't been long enough (only run she's ever cried at the end of)... the concept that this was a fun run where 'I'll Walk, Yule Run' I hadn't communicated it well enough and she just wanted to get to the finish line. Two years later we started more like the back of the pack, jogging it out and stopping to take pictures with the lights, some without pictures just to point out the details and looking forward in the middle of the run to coming back to walking it and taking it in even more. Perhaps just if not more importantly, our approach of sharing it hadn't changed long after the cameras were gone. The hot chocolate at the end was still very good. 

When it was being filmed it was the day after an MRI. This time I have an MRI in about 48 hours. They were filming that then too along with the results. I was nervous then and now. With an anxious mind, I have made mistakes including then and other MRI's about relationships and just general approach to life. People sometimes advise me not to make them again but that's like saying just will power your way to a faster marathon. Being better prepared helps but to think anything in life is 100% certain by better preparation is a good way to trick yourself. Still, I am trying and hoping to show people I care and not make any drastic mistakes. This is one where the point is to be grown up not childish.

But the chess coach, as I do before each MRI, has made a list of what to do if things go awry and being a grown up requires me to see that things in my brain that are not good have grown. It doesn't help to do it when right now due to whatever, I have a letter that says I don't have insurance at the end of January and I need to go back to the market and apply. It does help actually that this weekend, I am helping put on the Decker Challenge, the half marathon that I did after getting out of the hospital, the one I have been a part of every year since I started running it, the one ESPN filmed me running the last time I did and that I have been behind the scenes. It was the one that gave me the randomly assigned 911 at my first half after finding out I had cancer and I joked 'I don't even have to put an emergency number on the back, you guys put it on the front.' No matter what the results are on Thursday I'll be out there at that event focused on a race that once upon a time helped me regain focus on that running was going to be my therapy. I hope me helping run the event now is the way it shows that the universe balances itself out in the end. 

But no matter how that MRI goes, and here's hoping it goes well, once that's done and the race is done, I'm going to end the weekend by being a little less than fully grown up and have some happy holidaze. 

Monday, November 28, 2016

Lost In Wonder

"Y es tanta mi fe que aunque no tengo jardin ya me compre una podadora"-Arjona

A little over 6 years ago, brain cancer officially started. It immediately shook up my life financially, emotionally, the kid who'd never called in sick having more medical appointments between a seizure in November and brain surgery in March than I'd had the rest of my life combined. A few months later, I was a single dad in debt. In life there are always questions marks, always ellipses, always parenthetical things but I can say that was the first time where the exclamation marks were missing. I've longed stated that if you'd told me from age 20 to age 30 to predict my life, I would have missed a lot of things but gotten many right. If you'd asked form age 30 to 31, I would have gotten pretty much all of them wrong. 

Brain surgery had disrupted my plans and while I put it off to run a marathon, there was only so much I could keep delaying it so I cancelled a trip to Brazil. A few years before in 7/7/07 they had announced the Seven New Wonders of the world and I had decided that despite me having only been to a couple I'd try to knock them all out in due time. In March of 2011 was supposed to be number 5, the statute of the Christ at Rio, one more dream come true, one more passport stamp. It got cancelled. Mentally I wanted to say it got postponed but to me postponement means you rescheduled it; if it's not anywhere in concrete plans it's just a hope that it gets 'uncancelled."
As I wondered out loud, quietly, painfully where the next stage would be, I wanted something, anything to believe that a brighter future still lied ahead because well wandering was definitely coming. So I painted a wall in my guest room. I chose a room I'm rarely in because I didn't want the constant reminder but I also didn't want to give up hope. Though hope is frail it's hard to kill. I painted it an ocean blue and I placed a map of the world out there with a single dot to everywhere I'd ever been. It somehow looked so empty then and yet so promising at least with potential. I put a quote from one of only two books I've ever read more than once, the Lord of the Rings: Not all who wander are lost. 

It would take me over 4.5 years to get to Brazil but I pulled it off last December and stood there with my arms lifted high. A few days later I got back and placing a dot on that map... well it'd never meant more. A few months later back in Austin one of the Livestrong leaders during the conference said I should come visit his home sometime. A few of us have offered that to each other and taken up on it but Louay was from Egypt. I told him he could count on it; he said a few people had said that to him but no one had followed up yet. I am if nothing else, a man of my word, I told him. Less than 2 months later, the same month I got out of medical debt and Brexit had dropped plane ticket prices across the Atlantic, I sent him my itinerary over the Thanksgiving holiday. He said he was surprised by how quickly I'd followed up and I reminded him I was known for being relatively fast. He was engaged at the time and when his wedding was set for that weekend he asked me, as his brother, to be one of the groomsmen. I've had a lot of good Thanksgiving perhaps because I try to follow the root of the word which starts with Thanks and then Giving but I was thrilled. It would be the first time in all of my 30's I wouldn't be doing a formal race Thanksgiving morning but somehow it would be okay.

I'd put together a good crew, the Bond girl, the executor of my will, the guy who'd given me the most rides when I wasn't allowed to drive. We took a slight detour on the way there and caught Petra hiking it all the way to the top to make sure we got the best view. Troy had a great caption to his picture of it on social media; check out this world wonder and some buildings behind me. While it was obviously tongue in cheek, I would never travel alone because there's isn't anything worth seeing to me that isn't worth sharing. Before Petra, I could count the world wonders I'd been to on one hand. While Petra now required me to use both hands, I hold that relationships are far more wonder than all of those buildings put together and I personally recommending building life effort in that order. My hope is that those buildings were made because humanity was trying to give proper credence to how awesome love and relationships are. 

Only one of the ancient world wonders remain, The Pyramids of Giza, the oldest one of the bunch. Both Petra, a little over 2000 years old and the Pyramids closer to 5000 were ways to remember the dead in rock. They are impressive monuments and memories, gigantic. I hope that those people I care about know they are in proportion to that and yes I mean in proportion to the oldest largest monument. Those guys left monuments well past their death but to anyone who I've ever made a promise to keep till my dying day, whether that's near or far, I'll be keeping it. I sit here and wonder how I got to see these world wonders and don't have more to say about it but I just realize that some things are so grand that words aren't apt for them. 

But the best part of the trip to me wasn't the phenomenal sites, not the amazing food but building up the relationships I'd brought with me and the ones I'd come to experience. I met Louay's family at dinner and had a driver who we hung out with. Being connected in the cancer community has gotten me to partake of too many hospital, hospice visits and funerals. When you say you're going to be there for people till your dying day, well sometimes you have to be there for theirs. But this was the first wedding I'd been to because of a cancer connection. I'd brought a special knife set for the couple which was the one that was used to cut the cake and I'm glad to be a small part of their first slice of life and dessert to each other. I was asked to speak, a bit overwhelming since my Arabic is less than adequate. I don't remember much of what I said other than my finish which was to encourage my brother that there shouldn't be a day he doesn't turn to that girl and Love her strong. I have full faith that he will. His father is part of the police there, the definition of a man's man and both Louay's wife and mother are brilliant women. They said as I departed that I was now part of the family and their handshakes and the men who we kissed each other on the cheek made it feel absolutely genuine. Moments of affection were my favorite world wonders on this trip. 
I'm back home now and it's about time to start putting up the Christmas decorations. It's also around MRI time with an appointment next Wednesday, 10 days away and results Thursday's. Last year as Christmas decorations were going down I decided to get rid of the artificial Holiday tree. Kiana had always wanted a real tree and this was over a decade old with light and broken branches that made it... shall we say less than adequate? I threw the other one away and while I didn't tell her I internly said next year, she gets her real one. The map with missing spots had an indefinite timeline but this one I wanted to believe I'd still be around one year later, one more Christmas, with a new real tree. We'll go shopping for it this week. I brought her back a souvenir from both of the world wonders. I'll give it to her and we'll decorate the tree and that will be far more important than anything that happens next week. Not all who wander or wonder are lost and having faith a little in advance about concrete things even if's a blank spot on a wall or where tree used to be makes me think that maybe just maybe 2016 is about to be have the most wonderful time of the year. 

Saturday, November 5, 2016

Imagination is the Only Weapon

Remember, remember
the fifth of November
The day my brain cancer showed its spot
I see no reason
Why left temporal treason
Should ever be forgot

I am not a man who acknowledges many days of personal history. I haven't had a birthday party most years of my life and certainly not most of my adult ones. Heck two of the most recent ones I've spent helping people move without letting them know I was aging. Yet there is one day, that I've given more than nods and winks to, the cancerversary, November 5, 2010 the day that life changed. One moment I was looking at a menu, later that day at an MRI. I wasn't far from my review at work and suddenly it seemed a little less concerning than the results of my blood work. I was bemoaning the fact I had just turned 30, never quite realizing that maybe the jokes about how everything goes down hill fast after you turn 30 would be a little too apt. I became physically and mentally aware that despite the fact that I had not stopped for death, that someday that seemed far too soon it was going to stop for me.

So I acknowledge it each time it comes, the time it passes. Most of that day was just questions but those questions weren't from me. They were from friends, from family to me and to my doctors. Looking at the dark matter on an MRI, being told I had a tumor that was possibly cancer and we'd do a biopsy in a couple of days. It's like that moment where the lights go out and you remember things being visible but you're just staring at the darkness. But days since the annual acknowledgement has varied.

See life and I had always co existed, gotten along well with it. But finding out you have cancer... maybe it makes you give up on some aspects of living because you're aware that they may end unexpectedly. But not me, while I didn't quite realize it that day, it was the day that I committed to holding onto life, for better or worse, richer or poorer, in sickness and health till death did us part.  I'm corny enough, no cheesy enough, no hopelessly romantic enough that I actually know that I love many people but I love life itself so I looked up the traditional 6th anniversary gift. It was sugar and iron... so for breakfast I had a chocolate skull.

This year it started with a 10k, a 6.2 mile race to start the day of Celebrating 6 years of Life Part II. It was a place I'd never been, Mule Shoe with a racing company I'd never been part of, Spectrum. There are exactly zero races where I'm not gunning it and I took 2nd place. So while there may have been 1 guy ahead of me, I like to think the grim reaper was well behind me. Most importantly irregardless of those two, there were people from the running community besides me, one of which was a brain tumor survivor herself. I loved the race and there were additional highlights like the fact that they offered coke at the finish line. With about a half mile to go they had offered rum for people. I didn't take that during the race but once upon a time when I was getting medical restrictions they said I should no longer take part in alcohol or caffeine.  I responded with sass, "what about rum and coke, don't they cancel each other out?" I rarely drink but when I do that's become my drink of choice, in fact it's a nickname of mine, R&C. I am sorry to break it to you mom, or nurse but I broke that restriction today.

The race was actually entitled Wonderland. The finishers all got a cup which said We are all Mad Men now. Near the finish line they had great quotes from Alice in Wonderland, including my favorite one "Imagination is the only weapon in the war against reality." I never imagined I'd be still standing so that wasn't the war I was fighting for, cancer wasn't and isn't the reality I'm fighting. But I go to new places, new events, meet new people to take the war to a different level.  Life not cancer has progressed because originally I had the same attitude as Alice did upon meeting the Cheschire cat,

“Alice: Would you tell me, please, which way I ought to go from here?
The Cheshire Cat: That depends a good deal on where you want to get to.
Alice: I don't much care where.
The Cheshire Cat: Then it doesn't much matter which way you go."

But I've picked directions that beating cancer was not so much about taking on the disease, that was a small part of the puzzle. It was about working on the relationships I want to keep.  In that Wonderful book, it's also written, “My dear, here we must run as fast as we can, just to stay in place. And if you wish to go anywhere you must run twice as fast as that.” My cancer hasn't gotten any better or any worse; it's just stable. But while it took a few years it's been almost exactly 3 years sine I had a seizure. The medical debt is settled. I've hit PR's in every distance from the mile to the marathon since cancer started. I've done new events. But above all those things, I've done those races next to behind, in front, besides with people I love. So I take the joy in daring to imagine I've done a lot more than just stay in place.

Speaking of puzzles, I've been part of a couple of studies. One had a fascinating caveat in it that this study may not help you but it may help people in your condition down the road. It said it more formal legal language than that. But I've thought I'd just get to be a piece of the puzzle that would get solved well after me. But I've seen progresses in cancer in general, in the day to day things that patients can do, in brain cancer in specific. I got to be part of the inauguration of America's first medical university founding since before I was born at the University of Texas. My doctors from Duke have found ways to develop the polio vaccine to fight cancer. Livestrong continues to innovate how to deal with living with cancer. Imagination of theirs I've gotten to be witness of because of team work. Imagining good things.

Still the day continued with a puzzle room. The only goal there I had was to experience the puzzle, a casino heist where we were trying to get away with robbing it (it's just a play room mom). There were people as
part of or part of the dinner who were absolute parts of the past and the present and the future. Two of the guys, the guys whose names I wear on my wrist for emergencies, the guy who gave me the most rides when I wasn't allowed to drive that gave me a hard time about being a man among men. The ladies were as brilliant as they come. The 5 of us who had gone to the puzzle room had actually gotten one of the 5 fastest times that puzzle had ever existed. Because I'd been on a Alice in Wonderland kick between the two I had actually spent some time listening to Mona Lisa's and Mad Hatters and as we shared food and drink I couldn't help but sing somewhere deeper than my temporal lobe, maybe down to the left side of my chest, "And I thank the Lord There's people out there like you".   Each of them were someone I could have said that about as I took in some eye contact. Or as one of them reminded me, the only reason I have such good friends is because only good people can put up with someone like me.  I know that moment and every moment that even those who weren't there that day, there are people who I could say that about. I'm particularly grateful that there may not be a table large enough for me to have all the people I could say that about to share with. But I'm glad life reflects that table. 

But I'm ready to turn around and say good morning to the night but I look back on a day where  we solved a puzzle, did a race, had some donuts, and I am not sure I would have imagined being alive 6 years into this journey but had I known I was going to be, could I have imagined it any better? I think these 6 years are better than believing six impossible things before breakfast. 

Tuesday, November 1, 2016

Not Throwing Away My Shot

Life has strange coincidences but I'm just a few days away from when it's been 6 years since the
cancer journey started for me, November 5, 2010. Just by nature of the calendar, it always falls a few days after Halloween and Dia De  Muertos, two days in which the two cultures my childhood was spent in play with death. Like the boogeyman or clowns or murderers, on Halloween we play like we are something like them, that we are just as scary or that perhaps in pretending to be them and handout candy we disempower them. As Kiana and I went trick or treating last night, some people had some very elaborate ways to frighten those who dared to come to their door. There was one Kiana both wanted and didn't want to go see and she looked up at me and said, "You know how you always say you're not sure you want me to grow up, hold my hand and let's go up to that one like I'm a little girl." If that hand holding heated up her hand it was because my  heart had been warmed and warned by that sentiment.

In Latin America, we have the Day of the Dead, a strange dance in Mexico, the country I was born, where we pray, remember, help people along their spiritual journey. Catholicism when it arrived almost anywhere seemed to incorporate the beliefs they found with the truth they proclaimed (some detractors have called that plagiarism at it's finest, defenders have called it clarifying what had been misconstrued). A simple walk through some neighborhoods shows the churches literally built on top of some ancient temples in places. This Aztec/Catholic tradition though is acknowledgement, one that we take so seriously it is  actually a public holiday. It used to be at the end of summer long before I was born but we made it match Halloween in due time even if it was a day apar like Mex-Tex Tacos we turned the candy into our own recipe of elaborate skulls. 

It is a rhythm of costumes and skulls and carved pumpkins and ghosts that comes as I get closer each year as I remember, remember the 5th of November, the day my cancer journey started. People take some of each of these 'holidays' with seriousness and lightheartedness both in acceptance and rejection. I see posts on social media and on the street with people just goofing off with it, people announcing the important of remembering the dead and of people proclaiming the 'truth' about what 'really'happens to dead people from their religious perspective. I take all of that in stride, absorb it all and reflect and on today in particular, I write.

Because I realize that I'm almost 6 years into this cancer journey and I am grateful and haunted. It was only a few days ago that I realized that for the first time since I won the marathon in March of 2013 I had no invitations to speak or race. I joked on social media that I might finally get to retire and both were fixed within 24 hours... no rest for the wicked, weary... which one is it? Retirement didn't last a full day. But I looked back on just the last month alone and continued to accept my fortune.

I looked back at October alone to keep acknowledging my blessings. I long ago said that if not another blessing came I'd give God praise for the balance of my days but they keep coming. I got to go back to Beaumont, that town I won a marathon to give a speech about raising money for Livestrong. I did it with a sad acknowledgement to that the speaker who had been there the year before hadn't made it one year later despite his health was in theory more stable than mine the previous year. This time I got to take Kiana and the girl who loves dressing up got me to do it for a change. 

I looked back at the St. George Marathon where I got to speak and race. Neither of those was the point for the trip. I loved them both but they were the byproduct of a thriller trip. It was one of the most scenic races I ever got to be a part of  and the longest speech I've ever been asked to give. I got to go to Mount Zion and see ancient rocks. I got to have dinner in one of those remarkable coincidences where I'd brought some of home with me but I also had someone there who was present at my first Livestrong Challenge in California, someone who was there at my first race speech in Idaho, someone who was there at my first Spartan Championship Beat in Vermont and we were all just having dinner where they met each other. We were all strangers who had become friends and were just joking over pasta, talking about sports and the weather in St. George, a town that none of us called home when we met. I definitely got a better bond while being there. What are the odds the gods would put us all in one spot?

I looked back at the Livestrong Challenge that the last blog was about. I looked back at the fact that in the 6 weeks previous to the cancer anniversary I had given 6 speeches, done 6 events. In the 6 years I had done 6 Spartan beasts, 6 Livestrong Challenges, 6 Brain Power 5k's. The kid born 8/8/80 can't resist looking for patterns. On that last beast, there were 6 of us doing it friends and family all of which we had known each other essentially if not all of our lives . While they all talked smack before hand I beat them all during but then went back and checked on them at the course, medalling each one that I could. I do enough events where I get called a beast but the Spartan is the toughest thing I do each year so I'm glad it gives me a chance to properly earn the title. But we are beasts that hunt together. Someone recently gave me the analogy of the lion and the dog. When there is someone waving a piece of meat, the dog notices the meat and tries to please the person holding it; the lion notices the person holding it. Maybe this is why this Leon doesn't take many breaks from going from more of the puzzle but perhaps my favorite part is that Leons are part of a group and I'm glad that in all of these events, I have found ways to share them, shall we say I take pride in that. I was amused that where the Spartan is located, a lodge, actually had signs up that said not to go into the hunting area. I don't know whether or not we did or whether we were the hunters or the hunted but we came out still alive. 

I looked back at the Ragnar Relay. We put together a team of all ages but really if I'm honest they were all recruited because of respectable speeds. We would come in 2nd over all and would be the first coed team. 120 miles together through the evening, night and sunrise. It was a really fun night around fire places, s'mores and practical medals. It was funny as I was chatting with someone about how I would bring the things from s'mores I got an auto correct that I would bring the amores. I think we brought the love out there and I think we brought it home. Though maybe my displays of affection are interesting because the happiest I felt out there and the fastest leg I had was one where I tripped in the dark on a branch and got up and powered it all the way to the finish. Perhaps the adrenaline perhaps the rough wake up call in the middle of the night but I'd say my teammates said I came in pumped or on edge or happy and the answer of which one of those it was and I'd say all of them. This lifestyle has kept me tried and tired. Still through it all, people often ask what my results are and I'll give you a simple confession. I have not checked my results a single time this year. Some of that is that almost always people send them to me or someone is there who tell me but on some races I honestly have no clue what they were. I am a kid who was valedictorian for many reasons but primary among those was because i kept track of who I needed to beat. I had some school records as well because I was and am competitive. So it may not make sense to some, myself included why at the end of a race I don't check where I stand. I have no grand explanation other than as I'm almost six years into this cancer journey, I am above all grateful to be still in the runnings. 

There are people who genuinely care about me who think I should take it easy and relax. They see the bruise from the fall in Ragnar, the cut from the rock at the Spartan.  For me taking it easy and relaxing are antonyms. This is how I relax by leaving it out there though there are days where my body does suggest I take it easy. But I still just work off the reality that there will come a time where I'm laid to rest. So the day after Ragnar I go bike 50 plus miles with some Livestrong friends. The day after the Spartan beast Kiana and host a pumpkin carving party where you grab the pumpkin by the face and make it what you want. I often wear a make him work for it shirt, of a runner in front of the grim reaper. The grim reaper eventually catches up to all of us and we turn into dust but why make it easy? On this Halloween, I carved him into a pumpkin and will discard him in the trash on Dia De Los Muertos. You'll get your turn buddy but today, today it's mine. I think that attitude has resulted in me getting showered with goodness.

So what am I doing for the 6th anniversary of my cancer journey this Saturday. I am joining a race, a 10k, 6.2 miles to celebrate 6 years and then some. However it's not going to be a road race, I'm moving over to a single lane trail run, something I hadn't even done less than 2 years ago. Every year I've added a new physical element and kept them, daring to dream that if I keep messing with the system it has to figure out what to do with this new energy being channeled elsewhere and that the ones for the cancer cells can't have any chance of having fuel to grow. There will come a time where I return to dust but my hope is that on November 5 I'm kicking it back through some trails. 

But don't worry I still fuel up because afterwards I'm grabbing dessert with my friend Todd. At one of my speeches during the Q&A, someone asked if getting cancer had changed my diet. I said that I usually ate pretty healthy but that was primarily for athletic reasons not 'health' reasons. However after getting cancer I have dessert more often since the disease I have has no known dietary, genetic, lifestyle or environmental components. If I'm really not likely to be 40, you better believe I'm having dessert once in a while. Like last night when I made sure to test that some of Kiana's Halloween trick or treating wasn't poisoned by trying it first. Man I am a good dad ;). We had some fun for Halloween last night with the first time we ever coordinated costumes. She went as a pirate and I went as her missing eye. I'll keep watching out for the things she doesn't see as long as both life and her are kind enough to let me. 

The title of today's entry come from the song My Shot, from the Musical Hamilton. I actually have not seen it but a parody of it on tv recently made me want to hear the original

Rise up 
I imagine death so much it feels more like a memory
When’s it gonna get me?
In my sleep, seven feet ahead of me?
If I see it comin’, do I run or do I let it be?
Is it like a beat without a melody?

   -My Shot, Hamilton Musical

The cancer journey has never been a delightful one. Choosing to be involved and public has come at a high emotional cost because without exception at the events mentioned and others there have been people who I've met who are no longer with us. Some of them are in the exact media as I am, some of them were cancer free at the time. One of them died the night before Boston. One of them died on November 5. George Clooney of all people said that that's a challenge of life, you're either closer to death or you're having to bury many of your friends. I've moved past part of some Clooney elements of my life, choosing to at least give better bonding a try but I can relate to that. 

I am grateful to have had connections and make new ones that made me focus on the living, both my own and those here. It's good to give nods to those who have come before us, to remember the connection to those who got to the finish line before us. It's likely healthy as well to acknowledge that our own finish line will come and that it's distance is not as predictable as those at events. It is perhaps why those particular lines jumped out at me that I've spent so much time imagining death that it feels more like a memory? If I see it coming do I run or do I let it be, is it like a beat without a melody? I have a damaged memory so I'm thankful the concept of dying and that damage keeps making me want to make some new memories. And I used to be in a marching band and a fair share of the time the drums were the only ones playing. However some of those times were an introduction to start the music even if it would be the exact same beats that would play at the end of the song.
I've long called this cancer journey life Part II. I've met cancer survivors who for whatever reason disconnect from their pre cancer life and that's their call. Mine is not a new life, it's a sequel and I can't think of any good sequels that didn't keep some of the original connections, make new ones and work character development. 

However we acknowledge the day of the dead and Halloween, I hope it's never a way to make up for opportunities to easily available while f fully alive. So I'll keep aging, raging, rising up in the hope that however few or many days of life with cancer are left that I have not thrown away my shot. 

Friday, October 21, 2016

Manifesto Destiny

I am not sure I'll ever quite balance my skeptical side and my hopeful side. My hedges are always on the skeptical side but my hopeful side somehow has been kind enough to keep over riding reality to be greater than any expectations. The Livestrong challenge weekend was definitely one full of hope.

Just a few days ago, it was a chance to once again do the Livestrong Challenge. It would be my 6th but this time, this time it was different. The other times I'd ridden a century, one hundred miles, sections with people but never the entirety with anyone. This time, I'd been training a young lady, Kiana Leon, the daughter the Universe was kind enough to let me stick around to raise after cancer to do her first ride. She would be doing 20 miles, the longest ride of her 9 year old life. This one would be the first one where my parents would be there for the ride (they visit a lot more since Kiana was born but somehow rarely when she's not around... I can't quite figure out why).  I love that an organization that helps people deal with the mortality reality that comes with cancer, sometimes with death itself labels itself Livestrong. Furthermore that they call their event 'the challenge' because they have helped me and many Challenge our limits.

While it was my 6th, it was the Livestrong Ride's 20th anniversary. It was just a coincidence that this was the one that I was riding 20 miles with Kiana or was it? It was the first time Kiana would make a fundraising dinner because while she had made a goal of $500 of fundraising, she had broken $600. I had family there, friends, people I loved to my side, directly across the table and all over the room; people who had come to life irregardless of a disease and high on that priority list of my most important value, showing up and working on the relationships I want to keep. They are friends who I'd met through cancer but the connection was deeper than any disease no matter how invasive; light always wins over darkness.

Before I get too far into the weekend, before the formalities of dinner, I'd taken the early arrivals to enjoy the pleasure of their company. I'd shown them some of the best parts of my town from formal things to the things that help keep Austin weird to even taking them to the swing that takes you into the river. There were meals with friends literally that I had met and had meals with from coast to coast and everywhere in between, Seattle, St. George, New Hampshire, DC and we reconnected. No 'reconnecting' is not the right description, we simply got to enjoy the connection in person.

But there at the formal dinner, while I had relationships of every level all around me, my eyes were primarily on Kiana during the speeches and videos. I wondered whether this was ever my best move with her being the only child. She sat and watched it all including videos we were in of people in treatment, in pain. She listened to people talk about how they took too long to share their stories from the CEO and President of the Organization, about how in trying to protect others they had damaged themselves and their relationship but they were glad they had stepped up. Not only that they were now advocates people who had helped people like me who started the same way to step into a lane with a solid pace about realizing that life, worry about death, vulnerability like the air we breathe is meant to be shared. I was impressed by the discipline Kiana showed as she watched people talk about their stories including people sharing stories about people who cancer had taken like children, spouses. I'd grab her hand often or rub her back as reassurance. She'd squeeze back or look up and I'm not sure in those moments who was reassuring who.

Perhaps because I don't know how to sit still but I like to think it's that no matter where life takes you it's good to stay connected with people who were there when things went right and wrong. I got up the next morning to run a 5k, taking 3rd in it. From there I'd go play ultimate frisbee with friends who had given me rides once upon a time. From there I'd go have lunch with my team, the Cyclists Combating Cancer who coincidentally had been the top fundraising team, then a happy hour with the Livestrong leaders, then another meal with my parents before getting everything ready to go in the car. Good food and good company all weekend and it seemed so fast and I couldn't seem to take enough of it in. But as I loaded up the car with 2 bikes and helmets and everything for the morning, I couldn't help but think,  I wouldn't have bet on this day coming. I thank Life for the blessings that help me believe the unbelievable, receive the inconceivable, and see beyond my wildest imagination. I thought well I'll get a good night's rest but my dream life is while I'm awake. 

So Kiana and I got ready to ride the next morning. As we did there'd be friends who were from so many places and phases and were they hugged with conviction. People from running who I'd met before cancer, people who I'd met after because of it, friends from Beaumont where I won the marathon, from Canada, from Michigan. It was Kiana's time meeting many of them for the first time and we both rolled our eyes at each other appropriately when someone told us how great the other one was with me ribbing about how she's jealous of her dad's coolness and her saying she helped pick out my outfit. We got ready to ride 20 miles which started with a serious uphill. Kiana never blinked, never stopped and despite several people passing us because of their larger bikes and general people size, anyone who addressed her was with a word of encouragement. I did my first Livestrong ride on my own a few years back but my company sure had improved on this one. Even it was a tough up hill to start several miles, turns out the right company keeps you focused on far more than the hill in front of you. We'd only step briefly at the power stop to take in some water and calories and perhaps because we knew we were on our way home, perhaps because it was more than downhill we powered it in. She finished smiling and I finished with the biggest smile of any challenge I've yet to have. Cancer has brought many 4 letter words to mind but it was nice to ride with my favorite word on two separate banners, HOPE. Hope was my only 4 letter word that day. 

My parents had done the 5k while we were done and they were there waiting. I'm pretty competitive so I hate conceding losses but if there's anyone who hugs Kiana with more conviction than me, it's  her grandparents. I tried to copy their style of hugging her into hugging them. There may come a day where our best days are behind us but as 3 generations sat there loving each other and in love with life resting from their adventure, rest assured that day was not on Livestrong's 20th anniversary. 

However, resting can only be handled for a few moments by a 9 year old with Kiana's energy so it wasn't long before we were cheering friends in or hearing about their bike ride or 5k. Kiana's new found friend who had sent her arts and craft was the one who gave us the survivor rose. Survivorship in this family is shared. Nanny who without legs had skateboarded the 5k became one more person who Kiana learned to share it with. Like any good party, after the formalities of the ride and the conversations about how things have grown as Livestrong has grown up, we went back to the shaningans of birthday parties. Kiana turns out has a decent throw and got me in the dunk tank on her 2nd throw. She would try it successfully a few more times just to make sure that I was appropriately cooled off and cleaned after the ride and testing that new iPhone waterproofness.

At the Friday night dinner, they had shown a new video of the Livestrong manifesto. During the video process, we had all read it all and I'm not sure how they chose which lines to highlight in the video. I wonder if the ones that I got to say were the ones I said with the most conviction because life has been kind enough to let me live them out. "We believe in energy channelled and fierce... unity is strength.... you're in the fight of your life... we're about the hard stuff...take no prisoners... this is Livestrong" I'd watch it again Sunday night after putting Kiana to bed. It felt like it was first time after the ride since the first time I'd primarily been watching Kiana watch it. 

After a few good snacks and a few more hugs, we said goodbye, no see you later to some of those good friends and my parents as we headed back to each of our homes. But I just kept thinking Kiana's 9, I'm not even at 6 years of my cancerversary, what I've always called Life Part II. The Livestrong Challenge was just celebrating turning 20. By any standard those are all pretty young. I wasn't sure I'd even get here but that day made me believe or at least dream that we're still just getting started let's see what destiny keeps manifesting itself. 

Thursday, September 29, 2016

Yes and...

A little under six years ago back in October of 2010, a couple of weeks before the grand mal seizure would start , I had just started training for my 2nd shot at the Austin marathon. My first go-around I had done my long runs entirely on my own, the idea of getting up at the crack of dawn on the weekend to run 10-20 miles seeming what it is, absurd. You go out on Friday night and Saturday night and thus get up after sunrise on the next day, not before it much less to pound pavement. I was out doing 20 miles not too long ago and there were some people playing pikeman go at 5 am on the Texas Capitol as we ran through and one of my runner friends thought that was silly. I said it’s arguable which one of us doing the less intelligent thing since we were running in near 80 degree weather 2 hours before sunrise.

But when I was new to this having been up since like 5:30 for the first time, I had lived a busy Saturday with a 3 year old child and Costco shopping and this dinner, I was fading and got home at 9:00 PM ready to go to bed on a Saturday night *yep I had just turned 30*. Todd, a great friend, the executor of my will and a guy who had gotten into improv called me up and invited me to go watch an improvised comedy show.  I was tired and immediately tried to defer but he quoted something to me that I often said “No one says on their death bed…” with whatever it is I was trying to talk people into after. He would say “on one says on their death bed I wish I’d gotten more sleep.” I dressed and we went out for improv.

During the improv show, one of audience members threw out to the improvisers “worst lines ever delivered at a funeral.” I don’t remember any of those lines but afterwards Todd and I went out to eat and we joked around about how we would deliver the worst lines at each other’s funeral. At mine, he reportedly is going to say “Psh, so what I’ve got two other friends.” I recently updated some minor details to my will and sent it to him and he wrote back “Don’t use this anytime soon; my other two friends are going to require longer eulogies and I still haven’t started working on them.” That same conversation we realized we actually had a mutual friend because we had both donated to her Race for the Cure. I had helped out with fundraisers for charities before this and he asked why I’d never helped out with a cancer one and I responded with the reality at the time, “I’ve never really been close to anyone who had cancer.”

Less than 2 weeks later I’d be in the hospital with a grand mal seizure, waiting for a biopsy to figure out what this brain tumor like material in my MRI was. He was one of several good friends who visited me, I mean one of 3 and he asked what I felt like eating and I don’t know where it came from but I said “Hooters wings.” He responded with “well there’s definitely something wrong with your brain, who gets Hooters to go?!? But all right if that’s what you feel like, I’ll have them for you… right after the biopsy.” There’s a picture of me waking up not long after the biopsy, no one has ever noticed it or at least not commented on it but there’s some chicken wings right in front of it.

He would continue to be part of improv even invited me to attend a beginner’s class (if he’s reading and so everyone knows he’s not nearly as funny or as smart as my blog or these speeches even if he has a Ph’d, has been quoted in Time magazine, or has bigger hands). The nature of single fatherhood’s time restriction made taking a full time class unrealistic but I was fascinated by a concept they introduced or at least explained. Comedy improvisers have to feed off each other, off of audiences, off strange situations or unseen circumstances. They introduced the concept as “Yes… and” you accept the addition and continue, hopefully bringing the right balance of pathos and ethos into it. The concept they introduced was about how you roll with it rather than try to get back to where you were headed with your story or act. It may tell you how much I like the concept that one of Austin’s best improv and story tellers is someone I would trust with my child and the Bond girl whose been written about in here was also an improviser. Maybe that’s why they like me too.

See, I love the attitude and the encapsulation of it better. It’s not “yes, when” “yes ,but” and not “no.” There’s obviously a time for all of these things but it is my hope, my motto, a mantra that ‘yes and’ has become my default for life. This has led to some mistakes but mostly for me in the last few years it has led to some really cool things and even when it’s led to mistakes I’d rather regret things I have done than things I haven’t. Like Frankie said I did it my way and I just want to live while I’m alive.  I don't know the etymology but perhaps improvise and improvement have a similar beginning for a reason. 

It’s been a good September of yes and. Kiana and I lined up for the Brainpower 5k early in the month. I paced her at PR pace for two miles and then let her go with 1 mile to go. She beat her fastest 5k by over a minute to just under 24 which means the kid has now taken more time off her 5k than I have off my marathon in 2.5 years. There were some new ‘survivors’ there and more ‘in memory’ of signs. I take Kiana to these things hoping that she shares, echoes some of the ‘yes and’ attitude. That we acknowledge that brain cancer is a thing that has affected too many of us adversely. Yes it has and we can still do something positive. I’m one of the very few people that has been at all 6 of them. Our team has been in various years the top fundraiser, the fastest. On the 2016 version, I just ran right next to Kiana for the first two miles holding the pace she needed to PR and then she left and her last mile she took off lots of time. Yes this is a brain cancer race and yes we are going to train for it and show ourselves and those affected that we can still use it for focus of honor and memory. Kiana won her age group and came in 10th over all female and our team took fastest once again. 

Kiana and I continue to train for the Livestrong Challenge her first 20 mile ride. She is at $400 of the $500 fundraising goal she set (if you want to donate go here). We train honestly, outside when we can and avoiding some of the lightning yes we get out of outdoors then and even so set up an indoor spot for those days. 

I am speaking at the St. George Marathon tomorrow. It’s the longest speech I’ve been asked to give so I’m hoping they hand out pillows because it's better than if they  hand out tomatoes. I’m staring with the joke about how the first speech I gave was when running for Parliamentarian of the student body in 7th grade and said “By George, I’ve got the best option.” I didn’t mean it as joke back when I was 12 but it was well received. It’s come full circle. Maybe I had the yes and attitude just no verbiage for it a good chunk of my life but when cancer started for me there was a whole lot of hampering it because this and that went wrong. It was well maybe, once I take care of this. But the reason it started all again was the yes and. Yes I’ll give a longer speech and I’ll take some questions after.

The first Livestrong ride was new to me back in 2011. I had never learned to ride a bicycle and had to learn when I was 31and had the opportunity. I said yes and I rode 100 miles 5 times in 5 years. The first one was out in California and I made friends with Steve, a Livestrong leader. I hadn’t done any proper upper body work since high school and still signed up for Spartans which both then and now kick my ass. Yet I made some friends including two who we ended up sharing a communal room the first time I did a Spartan beast on the east coast at the Vermont Championships. The universe is kind enough to where both Steve and Joanie somehow are coming to St. George to hear the speech. Yes and Steve’s also going to show me around his town and Joanie volunteered to be the sweeper on the course the person who finishes with the back of the pack. Life has provided many saints and a few angels in my life.

I fly in and out of Vegas, won’t be there long and I hear that what happens stays there but I have limited time so I’ll just catch a little gambling, a meal, and a show before a middle of the night flight out of there. The show is Cirque de Solei covering Michael Jackson music and dancing. Got a cute date even. Somewhere in the middle of all that I’ll be running a marathon. I try to remind myself what I say in most of my race speeches that the race is the reward not the work.

With that attitude and being out of debt I’ve set aside a small amount of money every month to just do something that looks towards the future. None of it is a big deal, it’s just a sign of hope that the future has more “yes ands” that I’ve dared dream of for too long. This month I bought new silverware from Costco since I didn’t even have a full set remaining from the past. Call it concrete, I meal medal dreaming about that many good meals are still coming and that they should be properly served. Going to college in Napa Valley made some impression. 

Kiana has adopted the attitude. I took her to a new swimming spot a friend introduced me to on Monday. It took me only till Friday to take her and a Spartan trainer who was visiting town. All I had done was jump on Monday but immediately she asked if she could dive; I responded with yes and if I don’t break my neck you can too (it was plenty deep enough). Then she asked if she could do flips into the water and I said yes and let me take some pictures of that. We went back to the rope swing which we’ve done many times where we kept swinging. What was supposed to be the last swing her foot caught on the the rope after she let go and she was flipped and landed badly into the water. She came out crying and I held her for a while. I asked her if we could do it one more time together with me on one tree and her on the other. She said yes and we went out on a high note, fear from a bad landing was a hesitation for just a split second but it didn’t win the day. 

We went to a marathon kids kick off the next day. She ran more laps than anyone in the entire school in the 25 minutes allotted. Then just for good measure she went back out after everyone was done cause she wanted to get a proper 5k in. We stopped and flipped some tires at a Spartan event, then drove hour hours to Beaumont to speak at  a Livestrong event where Kiana heard some things she’d never heard before. She had a smiling face at some points, a quiet one at others and a big hug at the end. 

I still wonder if I’ve gotten any of this right. I still get nervous about each race. I still worry about every medical appointment. Yes I do and that is why we keep going.