Tuesday, May 22, 2018

Walking Down the Aisles

Well, Elaine and I are finally getting serious as we're getting ready to walk down the aisles. That aisles is not a typo. We've been dating for the better part of 3 years, she moved in a little over year ago, and we've been engaged for about 6 months but this week we got a joint Costco membership. I mean now she will know just how much I like me some mass purchases. I've always said if they don't sell it at Costco, you don't need it (no I am not in anyway employed or sponsored by them but I really did buy my house partly because of how close it was to Costco). But I mean this is a serious commitment now. 

Actually, what is good is that the wedding on 8/18/18 is now 88 days away. What's important about that is that I know it, I have a reminder on my phone or a countdown really but what's fun with it is that I don't know exactly how many days till my next MRI. I've been measuring life for the last several years from MRI to MRI, really only until recently looking past it. I still get invited to speak and in the speech I gave to an all Hispanic Audience for the first time, I told a bit of our dating story and my proposal but I also ended with the reality that I still have brain cancer but between the MRI and it's results I have the Moonlight Margarita which is a 5k with good drinks at the end. I tried to be hispanically clever near the finish with the line of " I don't always get to control the beats and rhythms that life throws out at me but I figured these legs and that drink will make it a little easier to dance."" But actually while the speech was well received (it ended with people so cold afterwards that they stood up to stretch out and rubbed their hands together in a clapping motion), it was actually the toughest delivery I've ever had because dead center there was a table full of hispanic women crying. Somehow in my attempt to make eye contact and in the fact I still have emotions in this damaged brain I had to take 3 unexpected pauses to not cry at my own speech where I wanted to be like don't worry ladies, I don't die at the end of this story, at least not yet. 

It seems around this season I have at least one race scheduled every weekend. It's almost my tradition but before it was therapeutic. I think this time it's just for the run of it, wondering how long the legs will hold speed, not how long the brain will hold cancer back. The focus of the future has been the details of the wedding, some jokes about the silliness of the sacredness of this human ceremony. But in little races where Kiana PR's or Elaine PR's or we do a team scavenger hunt which last year we took 1st and this year we took 3rd and I go, okay hope we can do this again next year and still place but the if is just that there would be no conflict, not whether or not I'll be alive. Believe you me, I still wonder and worry but while I took Greek, I don't do Hubris. The honeymoon will be in Greece by the way, seems appropriate for people that met training for a marathon and got engaged at the beginning of a Spartan. But now the future is something that I dare to dream out loud. Someone who I hadn't talked to in a while even wondered how Elaine moved the mountains that I'd put to protect other people from my future. I don't have a good answer for that but I hope no one regrets it ever and certainly any time soon. I haven't completely forgotten about it, nor have my nightmares as I dreamed recently that in the MRI my tumor had grown and we were trying to decide whether or not to proceed with the wedding with a predictably shorter life span (we did) and whether or not to tell many people that this was coming (I woke up before that decision was made in the dream). Not a fan of the dream but in the scheme and pattern of the last few years, I prefer that my daydreams have more joy than my sleeping ones because in those I have a choice. 

The custody thing went almost entirely as I'd predicted and 98% in what I'd hoped for. It's still technically not done because legal documents aren't signed. The judge had a few cases and so it took almost two months to get to the ruling but while the facebook nod was that Kiana would still be spending most of her time here, the truth is that she'll now be having slightly more time at what I call home. The universe  has been kind enough to reward the one thing in my life I feel like I've focused correctly on and I'm thankful. 

Kiana has 5 days left of 5th grade and then she's no longer in elementary. She never calls herself the next grade till it has started but she'll enjoy being a 5 1/2 grader for the summer. She got perfect scores on her standardized testing so at least one brain in the household still works pretty well. But she keeps a fun balance as that picture on the swing shows with great grades, making the theater team at her junior high and recently doing her first timed mile at a 6:06. I don't recall but I'm not sure my first timed mile was that fast. Not that I'm bitter or anything. 

And all 3 of us are still swinging, running together sometime, sometime separately. Some are disciplined runs, some are philosophical runs, some are ones where we end up taking a break in the middle to swing into a river after a rain storm. Oddly enough the death in my household that I'm the most worried about is the 4th soul in my household, my 14 year old dog's, Puppy. It's funny the venue for our wedding stated that dogs can be there for the ceremony briefly and I thought that was so cheesy when we booked it. But now as she struggles when we get in the car and the stairs and the walks are still fun but growing shorter in her old age and Texas rising heat, I wonder if maybe someone is going to end up being my favorite guest by bringing her and taking her home. I don't think she'd care but if she's still around, why not have the whole family? Have I become one of those cheesy pet people? 

I guess I'll be in a machine in a couple of weeks to see if I keep being part of the minority with brain cancer. It may show the stressor of it that I have a 5k the night before the MRI by myself but I'm learning because between the MRI and the results, the 5k I'm doing it I'm being joined by both Kiana and Elaine and the ARC board as I start my 4th year as President. I'm looking forward to the fact that I have promises to keep and miles to go before I sleep. 

When Kiana says I love you, I often respond with I love you more etc in a cheesy back and forth. Somehow until recently with Elaine when she said it or I said it, it was always I love you too in response but recently I started with I love you more as the response once in a while. She joked that she wondered if it was me being competitive or affectionate and of course it can be both which is what I would call a win/win (for those of you who think life is not a competition, just realize that at your conception there was this big swim meet with thousands and thousands of swimmers and you won, that's how you were born! I just have kept that spirit up!). But believe you me with everyone I love, I'm always going to try to be the one who loves more because well I've been a costco member since I was in college, so I like to do things in bulk. And if every once in a while that gets messy because love can be complicated, well love is something I hope that those around me are willing to clean up in the aisle.

Tuesday, April 24, 2018

Hide Out Under There

On an evening such as this
It's hard to tell if I exist
If I pack the car and leave this town
Who'll notice that I'm not around
I could hide out under there
I just made you say "underwear"

I've never been comfortable with funerals or memorial services, perhaps very few people are but somehow I've ended up attending too many.The first personal death that made an impression on me was my great grandmother in 7th grade. She was, as is the nature of grandmothers, always old from my perspective so in a different category of humanity as me, still growing, in our youths we tend to be a little less mindful if not downright in denial of our mortality.

The first one that made an impression of that was in college. There was a friend who literally died on her job between in my early college years, the same age as me, not even old enough to drink. I intended to skip the funeral but went and even spoke briefly at it, quickly and quietly learning the lesson that a lot of people say at funerals what should have been said before the person was in a casket. This was as close to justified as I've ever seen it because it was someone young and a sudden death. 

In the Marshall Islands where I volunteered as a teacher after college, funerals a big event and I attended too many (is there a right amount?). It's a continual ceremony over several days with one group entering the family room where the casket is there and everyone sitting in silence for a while. There is some interaction between the family and the most important person in the group (this often defaulted to me as I went with students) and then leaving of cash or soap directly on top of the open casket window. 

The challenge though of the vast majority of funerals and memorial services I've attended over the last few years is that they have been friends who I've met through cancer circles. They are friends who our denial of our mortality had become, depending on the individual, sometimes much stronger and sometimes much weaker as they dealt with the disease. With only one exception, I've actually passed up any formal part in a funeral, big or small, other than attending. The things I need to say I say as long before as I can. The fact that I do not part take in the formalities says something but perhaps just as telling is the reality that the first time I got a babysitter after becoming a single father was so that Kiana would not have her first memorial service be that of a stranger to her. And while I'm less than 4 months from marriage, a few days ago was the first time I took Elaine with me to a memorial service. In far too many of these services, I am the only or only one of a few people in the audience that came out of their cancer circles. I've worried if perhaps I'm doing a disservice by attending, a reminder that cancer has been unfair and taken far better people than me faster. 

The memorial service we attended was for Minerva, someone who I've written about before. Like all good memorial services, there was laughter and tears expressed the exclamation parts throughout years. There were gaps that left question marks. Like all individuals there were moments that made the death a little too mistimed, her receiving her cancer diagnosis on the same day her daughter got accepted to MIT. She wouldn't even make it to her daughter's graduation but MIT was kind enough to have a private in advance ceremony video to send to her mom for her to view back in Austin hospice care. There was a slideshow during it, of a picture of the race we did together. I pushed her in a stroller for a 10k, where she own her age group. I always wear the 'you just got passed by a survivor' shirt to that race but that picture was somehow a great memory of remembering exactly how I had Minerva's back. But in total frankness, it was also a guilty moment that being shown at her memorial service where I was still standing and she was gone. Cancer changes many of us, especially brain tumor survivors where we lost part of who we were, because we literally lost part of our mind. Listening to those stories while someone is recovered or recovering from cancer can be inspiring when you've met someone after they had to relearn to walk or talk. Hearing them at funerals can have a comforting or discomforting effect, sometimes both simultaneously. 

It was a Christian ceremony, my own church was intrigued to see me in dress clothes at church but it was because I was going to the ceremony afterwards. There was the usual talk of heaven and some beautiful singing. But it did and has thrown me off since her death and memorial services as many of them do, this one more than most. She was a friend who I'd gone to her house, her hospital, her hospice, who I had cheered on in races. And yet when I was at her memorial service, there was literally about a handful of people I knew in the room. It can be odd at ceremonies where see that someone's circles are strangers to each other. At my wedding, I hope to bridge some of those gaps. At memorial services, I don't quite know how to approach it so the only people I talked to where the family members of hers I had already met, the person who introduced us and Elaine and even with those I didn't say much. 

I mean no disrespect to how anyone handles death and anyone who is easily offended should probably never read my blog or be my friend. But it seems at funerals and memorial services or perhaps the subconscious of this blog is to try to narrate, make sense of the story. It's what the human brain is literally wired to do, take points and weave them into a tapestry. At night when the brain does this we call these dreams or nightmares. During the day, it's a bit more complex and sometimes we call it history or politics, religion or philosophy, excuses or justification. There are some of those I think are true while others would believe the opposing belief is the real truth. I hold my convictions with conviction but I've been wrong enough to where I haven't achieved the arrogance to think 100% about anything. But when funerals or memorial services come, I listen to the ideas being proposed out there to make it a little easier to accept someone being gone. On some of those, I absorb the reality that the universe was around long before I came into it and will be around long after I'm gone. There are moments where, me the guy with a religion degree, remembers his comparative religion class where we all had to talk about if we knew we were going to heaven/hell, which religion's heaven or hell we would pick? (I'll tell you mine if you tell me yours.)

But oddly enough, the song that has recently been stuck in my head is the one quoted above. Making dramatic gestures at funerals can be comforting, our ideas and religion can be where we hide as well. Humanity wishes to control our destiny, even after death sometimes, or at least delay it. I mean I'm a guy who walked out of ambulances, put off brain surgery to run a marathon. It's why we like great doctors like mine and some would argue why certain religions were made up (this of course applies to every religion except the one you or I subscribe to, that one's universal truth).  I long ago gave up trying to impose too much meaning in death. It's beyond my imagination to make logical sense of it. But when I ran behind Minerva when I walked next to her, when I visited her in her home, in her hospital room, when we went out for breakfast, I knew that knowing her for just a few years due felt much too short. If I'd known her my entire life, it would still not be long enough. But I also know, that in the heartbreak of it all, like the greatfulness of the privilege of knowing her at all, those connections don't make death any easier for me but they do give meaning to life itself.

How we handle different things says something about us and the things we're dealing with. I wish to be cremated and flushed down the toilet and hope there is no funeral or memorial service. Or that if there is an the wish above is respected (the executor of my will has said he intends to ignore it) that everyone just line up to use the toilet sea that's already prepared for it. But ultimately funerals and memorial services are for the living, for self comfort, to tell and hear memories. I left Minerva's funeral and went home and then Elaine and I did a run/bike workout that we'd never done before with both of us going to places we'd never been in parts of it. Then we went and climbed a tree house. 

I also got home and sent some texts and emails and made some calls and with only one exception they were all people I regularly stay in contact with already, just wanted to make one more connection point. Yesterday Kiana and I went on a run and then went and climbed the same tree house. Those have been primarily the places I've hid to deal with my mortality, in exercise and in working on the relationships I want to keep to try to figure out what all this is for and seeing the humor in the situation. I am not suggesting that's a universal truth but if it ever rhymes with something you're interested in doing, you too can come hide with me under there. I hope you just said underwear. 

Monday, April 16, 2018

Shades of Gray

You can't change a stubborn mind You can't see the world if your eyes are blind 
What does it matter anyway In our darkest hour we're all just shades of grey

-Amanda Marshall

I was recently on a ride with two good friends, one has been a good friend for about a decade and one for about half that. We're all mature in life... and at the time we met we weren't in a serious relationship never going to get married and/or have kids for the first time or again. In the last 6 months, we've all gotten engaged and are engagements are lasting in length in negative proportion to our age...  Clearly we're people of conviction. We celebrated with a bike ride and burgers recently and did some heckling. 

It's a little over four months till the wedding and people keep asking if I'm stressed. We're not. We've both planned events on our own and have our good friend helping as a wedding coordinator. There is some concentration and energy and disagreements but that's called life. The other event that's taken up a lot of questions is what's going on with custody... and the answer is I have no clue. It's been seven weeks since the hearing and the judge still hasn't ruled so we're still waiting. Am I nervous? Of course, leaving your fate in a stranger's hands is well strange in my book but I've literally had to do with life and death issues with much longer wait periods with oh... brain surgery. I certainly have some different ideological approaches between how I parent and her mother does (and it takes no brain surgeon to realize we couldn't agree on our own and we both think our method is better enough  or else we wouldn't leave it in a stranger's hands). Still, while there's some anxiety, I have a hard time believing that anyone rational would make a big change in Kiana's life with her track history. Nonetheless, I try to follow my grandfather's approach to life, one day at a time, I get tired when I try to do two. 

It's been half a decade since I won a marathon and the media that followed. I honestly didn't think I'd still be alive today... the dreams them were just to get through the next MRI, getting to the next one was a question mark followed by an exclamation of relief. The dreams since then have become a little more fun since then. When Elaine moved in and we started living our life of sin a little over a year ago, we started doing some things on the house. I made this crazy list that I thought would take us oh a least a few years. There are 3 things left on that list with the latest one that got done being painting the outside of the house. Like a fair share of the remodeling we've done it ended up being shades of gray. It's one of our wedding decoration colors. The easy joke of course is that we'll eventually if we haven't already gotten to 50 shades. But actually the song that I have on a playlist that I'll have playing before the wedding has a song on there quoted above, that in our darkest hours we're all shades of gray. It's like when you're drunk people say it's who you really are... I disagree with that, it does show something about you but it shows your undisciplined self (I'm a philosophical drunk) but who you've become through discipline and choice is also worthy of consideration. But when your back is against the wall... when it's fight or flight... it says something. The guy who put off brain surgery to run a marathon is a story told often but the one the guy with a damaged memory remembers is the guy who focused on only the serious medical and financial stuff and neglected some relationships so I'm trying better on that end.  

I'm also having some fun with it. I've taken pictures of Kiana with bluebonnets since she was a kid. This was the first time I jumped in on it. Kiana's picked up my competitive edge and I'm trying to help her focus it. I'm still trying to contribute and train and gun. It's a fine but fun balancing act. We've each done fast 10ks in the last couple of weeks. Mine was not my fastest last week but I hit the elite standard. I was impressed in February when Kiana averaged a sub 7 pace for a 5k. Yesterday Elaine kept a similar pace for a 10k... Kiana did it just a few seconds over a 7 minute pace and beat her by less than a minute. That was a phenomenal individual accomplishment by both of them. But that wasn't even my personal favorite part. My parents came out for it and they ran the most they have in a 5k in a while getting good times. They've been married 3 decades or so now and perhaps the fact that they do all their races together tells you why. 

The Longhorn Run I was the 1st non student in 3 times and took third place the other time. The first time I ran it was with a stroller back in 2013 but here in 2018, I'm getting closer and closer to a dream that requires looking ahead far more than the next MRI.  It's getting to do the races that I did with a stroller with Kiana side by side (or these days often out kicking me). The Marathon I won, the one I put off brain surgery for, the one I won the stroller division in, and now the longhorn run are covered. We're going to keep going as long as I'm healthy and Kiana likes it. Turns out anyone who thinks running is a solo sport wouldn't rhyme with our approach that it's better shared. This running races ain't no thing but a family thing but the best time was that I started dreaming something up a while back and it's one of those times where the dreams that you dare to dream really do come true. 

I've taken 1st place male in another half since Beaumont (yep I got beat by a girl) by sprinting and winning it by less than one tenth of a second in my closest long distance win ever. I've kept supporting brain cancer races and took 3rd in the Head for the Cure race. I keep contributing to the communities that I'm a part of as best as I know. My 14 year old dog has good days and bad days and I've found new trails behind my house and we've been enjoying the spring weather out there. She has been off leash for most of it and even as she struggles more on some days than other and somedays she seems much younger than that, it takes a brief look at that tail wagging even when she struggles to climb up thing to reiterate to myself that there is zero chance that I'm going to fade away sitting in a nursing home if I have any say about it. You know during q&a after speeches, I get asked if I changed my diet after I found I had cancer. I respond with that I'd always eaten healthy for athletic reasons but I was taking in more dessert if I likely wasn't making 40... I might make it now so I'm not having as much dessert as a few years ago but puppy at 14 gets a treat pretty much on demand and I have no apologies for that. 

We're still taking on new adventures in our own messy way. Kiana did a spartan where she lost both her shoes in the mud very early on and did it anyway. I mountain biked for the 1st time since college and well whether or not I have any more kids may have gotten decided on one of those bumps. Kiana has gotten to ride on bumpy trails for the first time. I finally joined a gym for at least a bit to try to keep up with Elaine's workouts. People say I'm stubborn and I am but it turns out I can change my mind and occasionally aim that stubbornness in a new and healthier direction. 

What can I say but that life, life is good. I am never going to be perfect or handle stress without mistakes; I don't know anyone who has or does. But I'll tell you my darkest hours these days or any upcoming ones, I hope the stars shine a little brighter. 

Saturday, March 10, 2018

The Race That Doesn't Go to the Swift

I have seen something else under the sun: The race is not to the swift or the battle to the strong, nor does food come to the wise or wealth to the brilliant or favor to the learned; but time and chance happen to them all.

We like pretty packages in every religion. If you do A, it will get to B... eventually. In some religions, we call it heaven or afterlife or rebirth. In the religion of science, the ones most of my doctors and many of my friends practice fervently, we have this idea of perfect squares and circles for geometry (how many perfect squares or circles do you see in nature) or 2 is greater than 1 except I've seen a single tree or orange which is bigger than 2 or 3 of a different or its own kind. We explain the gaps in each religion with the same consistency that we approach politics or relationships that our country needs to be 'more perfect,' that the people we love are perfect for us if not perfect outright. It's easier to sleep at night if the world is clean and predictable, if we tune out the infrequencies. 

But that's not the way the world actually works. I knew this early from growing up in a rough neighborhood in a 3rd world country where some of my childhood friends are no longer with us from doing nothing wrong except being born in the wrong place. Life isn't fair and the art of the compromise of trying to change that while accepting it... it's at best an awkward two step. 

The balance and disbalance of my own life was shown as I returned to Gusher, the place I won a marathon with a stroller that was a life tipping point. I've long known and have emphasized that my win was the slowest win their marathon has ever had, the universe lined up. Last year, I went back with Elaine where I took 2nd place in the half and she took 4th in the women's division. We returned again two weeks after the Austin marathon, I went out more aggressively because I got suckered in by a couple of those young un's. I would end up winning the half, sort of. I was running with someone the vast majority of the way, the eventual marathon winner and well he crossed the 13.1 mark before I did on a double loop. Technically, that makes me the winner but I wondered out loud to many people including a reporter whether or not they shouldn't be giving him both trophies. A little while later Elaine came in and was the women's winner. It made for a romantic moment as it became clear and marked that out of the two genders in this relationship, she was clearly the better half. We moved on to the 40k cycling time trial where I came in 2nd to last in my category and she came in dead last again. We aren't good cyclists and I looked bad but on  there she looked horribly tired by the end. We're a little over 5 months for the wedding and while people may have called us a power couple for the double half win, we hugged and kissed at the end of both, and at say we're prepping well for that for better or worse vow. The Roughneck challenge at the end, we both did and she placed 2nd in her weight division but I won mine. I'd claim the victory but she had more people in her weight division and she beat me in 3 of the 5 events so I'd say this time she came out on top for the day. That's why we call it teamwork and why we have a shelf of joint medals and events. I love that girl. 

I've seen that dichotomy of life's fairness in a few ways in the last couple of weeks. The court hearing was interesting, two days after Gusher. I was actually a fan of the judge and let me be clear, I'm saying that without knowing the ruling. She decided she was going to not make a decision that day to give us more time to work out at least a school decision between Kiana's parents. But she seemed level headed to me, trying to figure out the issues. Even the fact she deferred, adding one more time where suspense is bothersome, is tough. We still have no ruling on custodial changes and educational decisions. 

Well we sort of don't. I literally got the last of Kiana's letters from middle school a few minutes ago. All of the schools have held different positions in her pecking order, Ann Richards having been 1& 2, Covington being 2 & 3, and Small being 1, 2, and 3. They are all at some level merit based but the Ann Richards school, consistently my first choice also has a lottery component. It was the only one she didn't make. At some level I had hoped she would mostly because it was my first choice but I hope she at least begins to learn the life lesson that many of us try to deny, that sometimes you do everything right and it doesn't work out. She has already accepted Small Middle School, a green tech academy and I hope it keeps feeding her scientific flair. The biggest struggle I'm having with is not the rejection but the fact that she's done with elementary in two months when just 5 minutes ago she was starting Kindergarten and like 20 minutes ago she was being born. 

In the balance of it all, middle schools and half marathons are small items in the life and death bit. The last BrainPower 5k I ran half with Kiana while other people pushed another survivor Minerva for the first half of the 10k. Then I took over and she said it was the most fun she'd had and she won her age group cause once I was behind her, we were flying. We both have a cancer that has no known dietary, genetic, lifestyle or environmental components. She got it after me and still in the misbalance of it all of life's unfairness to this disease, she passed away this morning. She had been aggressive about treatments but it kept coming back to where in the end she was in hospice at her moms care and her daughter and friends from all over came back to visit. There are survivors and family members who try to make sense of who goes and doesn't go from cancer or other things. I do not; it's all senseless to me. The only thing I try to do when someone I care about passes is knowing I'm ahead of billions of people in the history of humanity, because while I am heartbroken about their passing away, I've got something that those billions of people never did, a chance to get to know them. And that joy of their presence and the relationship is worth the heartbreak. I certainly think the people who had to live with ignorance of these great friends of mine are the ones who lost out on more. 

No the race is not always to the swift, the battle doesn't go to the strong. Chance and circumstance happens to us all. It is a curious analogue that when this brain journey started, I'd been playing poker for a while but we had a poker game at the hospital the first night. Then the night I decided to have brain surgery, when my doctors were divided about whether or not the surgery was worth the functional damage, I held a poker game, biggest one ever at my house. I presented the options to my friends and asked what they would and they were almost evenly split, with the two last people saying they would do opposite of the other. I joked that whoever won, I was following their advice. They decided to split the pot (and handed me both of their winnings to use towards medical bills). But that was the night I decided to go for it, to give life a chance because well, we're all going to die and I wanted to at least die trying. 

I've started recently to teach Kiana to play poker (she hasn't been involved in a money game...yet). But she has taken me out twice now with pocket A's in my hand and something else in hers. The most recent one was her pocket 5's to my pocket A's where she was behind till the very end and then got 4 of a kind while I had a full house. I've played poker for over a decade and had 4 of a kind twice. She's played the game twice and already gotten it. School rejections, winning poker hands, she's learning life's probability lessons are not full proof. There's no one 100% sure way to bet but I hope she continues to take risks, sometimes measured, sometimes less so. Probability is a strange thing with high risk sometimes yielding high rewards and sometimes risking huge disappointment. There is an old saying that the only certain things are death and taxes... Fair enough but that I'll get up and love people I've loved for years is more sure than 4 of a kind. There isn't a poker hand I'd bet on more than the people I've loved and certain people loving me back. I'll never become a cynic that talks about things like that always being unlikely. Heck, even if they are unlikely, I'll take it like Aristotle, it likely that unlikely things should happen. And I'm thankful I still have the life, love and liberty to bet it on. 

Friday, March 2, 2018

Rewrite the Stars

On a whim on a slow day, Elaine and I went and watched the Greatest Showman. I thoroughly enjoyed it. I've been amused at the fact the critics have panned it even as a critic within the movie itself did. An amusing anecdote is that people have derided its lack of factual accuracy... I'm a fan of history but a guy who went out and collected people who were different and exaggerated the stories. I imagine exaggeration and omission is jut one of the many ways its incomplete. Like Barnum himself, this is one of those movies that doesn't let facts get in the way of a good story.

Still, with that said, I own the entire soundtrack cause the girls in my house like it and we all sing along to it. We're even talking about including one song in a key part in our wedding. But there is one song that I seem to always skip, 'rewrite the stars.' It's a romantic notion and with less than 6 months to my wedding, I'm nothing if not a hopeful romantic but we didn't write the stars to begin with. And what we're starting at on nights with gorgeous darkness and brilliant points is past, a prologue of whatever the sky currently is. So it would be silly to spend too much time on things like that says the guy who started an astronomy club in middle school, who takes his daughter up to the roof on good nights or special evenings or has been telling her about how next week four planets will be visible in the sky.

It is perhaps why Elaine was kind enough to let our wedding have a bit of a logo for our save the date cards that went out recently. It is the Austin skyline a bit artsied up from when we started dating. Elaine picked out the wedding date of 8/18/18 to one up my birth of 8/8/80. The seals were hand applied by Kiana mostly cause fire and dripping wax are cool period but especially so when you're 11. We ignored and will ignore a lot of proper etiquette of names etc on invitations, putting on there what we call our friends and family. If being called on an envelope what we call them in person offends anyone, well they shouldn't come.  But there are less than subtle details in the skyline, in where we look up and aim highest that are there. Someone asked why there wasn't a small k or something there for Kiana who is part of our family that Elaine is marrying into. Kiana's the name of the Hawaiian moon goddess and look there's the moon. The other two are mine and Elaine's constellations. Mine has been one I've always embraced, how can a Leon whose high school mascot was the Lions not take Leo as part of his identity? Elaine doesn't quite have the same enthusiasm about hers but I make it up for her. It's honestly one I'd not paid much attention to till this project began but it's a crab, it's the cancer constellation. I've spent so much time energy and focus both internal and external, both giving and receiving about cancer that the universe was kind enough to say to me that if I had to deal with it in and its side effects till death, there was going to be good that also had cancer till death do us part. Maybe that's the real explanation of why I don't feel the need to rewrite the stars, both are about to be visible here for the next weeks in the northern Hemisphere, perhaps not coincidentally when I asked her to be my girlfriend.

The save the date cards had an infinity symbol as a seal, a side ways 8 which a few people gave me a hard time about but no one heckled her about that the stamp was a Chinese New Year Stamp! But see the sky keeps lining up nicely. Kiana and Elaine making from scratch dumplings for Chinese New Year's is a tradition I could get used to.

As I'll be looking at things that happened light years ago, March is an interesting month for me. Seven years ago today, I was checking into Duke for brain surgery on March 3rd. One year later I was waking up in an ambulance after a grand mal seizure in the middle of a 10 mile run. One year after that I was winning a marathon pushing a stroller. This year exactly 7 years after brain surgery, I will be back in Beaumont this time running the half, then doing a 40KM time trial on a bike than doing a roughneck challenge. It's the same thing Elaine and I did last year but she's been working out a lot more than me so we'll see how results change. But you
know what won't change, us going there together.

The tests seven years ago were blood work and an MRI etc.  I was worried about someone taking a slice of my brain, wondering just how much strangers the guy going onto that table and the guy coming off would be. This time, it's me on my own two feet, having learned to ride a bicycle, and then grunting through an upper body that lost a little bit of cancer but should have gained more muscle. The only thing I'm worried about a slice is something in a tire or in the muscles and I hope it doesn't happen but in the scheme of things...

When I won that marathon 5 years ago, there was a custodial case pending at that time her mother asking for me to go from primary caretaker to only have supervised visits due to my medical problems. Oddly enough, on Monday March 5th, we have another round of it with her mother now asking for more custody as well (the request is not quite as drastic this time). I am not quite sure how to not call it at least slightly silly that we allow strangers to make decisions about our children because parents can't work it out between themselves... I am handing the judge a few pictures early on so at least, at least he can put a face to the name. I slept well the night before brain surgery... perhaps because that doctor stranger had become a friend who I'd trust with my life. The judge and I won't talk before or likely after and it's a lot more nerve wracking to trust someone with any aspect of your child's life.

The stars aren't getting written today or tomorrow or Monday and how they shine through the future will not be fully known until the future itself. It would be dishonest to say that I am not worried about the possibilities and the path of unintended consequences. But I dare dream, no matter what there will be spots of light that line up, or at least that we imagine or impose patterns on. So tonight, tomorrow and every time my sleep is worried, the guy with the damaged memory will try to remember what Sarah Williams wrote, "I have loved the stars too fondly to be fearful of the night."

Thursday, February 22, 2018

Growing in Anger

For the 3rd year in a row, Kiana advanced to the regional science fair. This year's experiment tilted nurture or nature was about whether talking to plants in different tons affected their growth. The experiment title was intriguing enough cause she's such a great kid, I often joke about that I feel bad for whoever took mine home. But she tested whether talking in a happy tone, an angry tone, a neutral tone, or no talking would cause the best growth. They were all in the same light and room other than when she took them out to talk to them each day. I suppose like all of us who think the pursuit of happiness is the key to life would hope it was that positive tone that created the most growth. But it wasn't, it was the angry tone. They did matter, however, as the plant that didn't get talked to was the one that grew the least.

Kiana tried to theorize why the angry plant grew the most, perhaps it was because you speak louder when you're angry and more CO2 gets emitted. Still, Kiana is smart enough and scientific enough to do her experiment but realize a single data point is an anecdote so she researched more and while it has not been fully nailed down this experiment has been done with full green houses where they've done two with positive, two with negative, two with music and one without. In that experiment, the tones actually did not change but the one without sound once again grew the least. The one that grew the most was the one with music, seems right to me but maybe that's because everyone in my family seems to like to sing and dance, loudest in the shower it seems.

She'll present at the regional fair Saturday and we'll see how it goes. But it reminded me of times when I kept getting faster and faster on running. At least as an adult, it seems to be when I'm angriest at the circumstances of my life. I am not the type of person who thinks that we should try to get rid of anger or sadness or really any emotion. They are in the system for a reason and all of them should be channeled appropriately. I often wonder if the reason cancer hasn't killed me yet is that simple fight or flight survival mechanism. In the entire planet, most everyone who can outrun me, I could beat them in a fight and most everyone who could beat me in a fight, I can outrun them. Cancer took on a guy with great survival instincts and capacity and at least today, at least today, I am still winning.

I have a speech in a couple of hours at an event called Testify:Austin. It was actually an event where I heard Elaine speak a few years ago and the story she told there was probably the beginning of me realizing that we had potential. The theme is racy and most of the story tellers will be telling stories that rhyme more along with that while I was asked to share the story of when I put off brain surgery to run a marathon, no more, no less. There's no won a marathon down the line, just a self contained so I'll get to tell it with more details and more self reflection. They made us practice it in front of the producers and they gave feedback. The producer suggested I be a little more honest with the emotions I was feeling at the time. She says this to a guy who deals with his emotions so well that he hides them in a public blog! She messed with me enough to where I went back and re-read my first neuropsychological evaluation report which says that my "self-perception may actually represent utilization of denial as a psychological defense against anxiety." I'm telling a few parts of the story but sharing the line that I said on my goodbye tour as I finished dinners with old friends before brain surgery, "The guy going in may not be the same ones coming out; but this one loves you guys." Everyone then heard the affection and I meant that but it was as close as I came to acknowledging that I was very afraid that the guy going into brain surgery and the guy coming out of brain surgery were going to be strangers.

The running I was doing then was therapy; it was channeling the anger. It was why I qualified for Boston that day. I ran the Austin marathon Sunday and the weather wasn't great but you know what it wasn't great back in 2011 in either. But I'm just not angry and for better or worse, I don't channel happiness into better running. I loved running with a friend for a good section; it's the happiest I've ever been during a race. People always say they wave at me or cheer at me but I'm there with those angry songs (listen up, listen up there's a devil in the church... this is gonna hurt) looking intense and don't see them. This was the most signs I've ever seen, the most people I've ever waved at, the most happy I've been during a race. Someone who saw me with about a half mile to go genuinely expressed shock as they cheered for me and said..."you're smiling?"

Was it a mistake to run happy? I don't know but I don't think so. It certainly didn't lead to anywhere near my fastest marathon. I think I'll find the edge again and properly train but once my friend and I were running together the song that came on was "Despacito." While it's good to dance to and fun to run to, it means go slow. Usually I create playlists for races but I didn't for this one, I just put the ones on that I'm hoping the band or DJ plays at Elaine and I's wedding and I'm never in a rush to get off the dance floor and so I was singing and dancing for the second half of the Austin marathon, thinking about a cute girl, hoping I wasn't two stepping so slow that she would pass me... We've done a couple of marathons together where we caught up afterwards but on this one, I stayed at the finish line for a while until she finished and medalled her. This marathon was about looking forward to things with her. I planted a big kiss after cause I gotta start practicing for when they say you may now kiss the bride.

I'm not saying happiness isn't driving some growth in me. There have been many areas in my life that are growing again for the first time (though if you look carefully at those pics of me without the shirt, the happiness with Elaine and Kiana's good cooking may be the waistline). And I'm not saying there aren't things I'm angry. I went from finishing the marathon to visiting a friend from the Brainpower 5k who is now in hospice and has very little time left with the same disease. I was actually supposed to push her for this race like I did for that one and there were many times I thought of her. She got hugged a little tighter with my stinky self when I went by after the race. That anger has and will be aimed at being part of taking on cancer defeating efforts on a more global scale.

But the happiness is feeding good things. I'm trusting both Elaine and myself more...I think those are correlated. Some of the other things from my neuropsychological evaluation, the deficits are still there but I'm learning to cope with them, to work around them. I'm actually on quite a streak these days of hitting some high scores in brain rehab games that I hadn't hit in literally years.

I am hoping life keeps letting those parts of my brain grow. I am going to keep letting some fears go because as I heard recently there's no real point in tip toeing through life to arrive safely at death. And like sadness or anger, there's times I'll let those grow to and like happiness just try to channel them appropriately. And I dare dream, I dare hope, I dare believe and love that no matter which of those emotions I allow to driving growth it will be what prevents and deters this tumor from growing.

Saturday, February 17, 2018

Too Early In the Race

A week ago Kiana was racing her first race of 2018. While she had done other races including a 10 miler since then she had not done a 5k in 5 months. It was a small 5k and we went out there hoping to beat her previous PR of 23:00 with me hoping she'd get close to 22 but these days she has her own watch so I don't even turn mine on and she sets her own pace and well, I'm just running with good company.  Somehow, a little under halfway in an out back she was in 2nd place over all, 1st female. I turned to her and said you know if you keep this up, you might be the women's winner. Adding to the list of moments where it's a fair question of whose raising who, she turned to me and said, "Dad, it's too early in the race to be thinking that way."

She however started slowly speeding up and would end up holding that 2nd place overall and 1st female and hitting a PR of 21:37, taking off more time than frankly I imagined possible. As she out kicked me crossed the finish line, it was only a few steps beyond it where for the 1st time in any race she collapsed into my arms, clearly having left it all out there.  It was a valentine's themed race, Cupid's Chase where single people and unavailable people got different shirts but at least at this point, running with me is still her favorite guy. She would actually have a fever the next day and miss school for the 1st time in yers so I wondered (and felt guilty) if the illness had started or been contributed to by that 5k. She took it in stride. She's got a new training schedule starting next week based on her new time and it's going to be harder but she's not hesitant.

I, on the other hand, am a little more nervous. I am running the Austin Marathon tomorrow morning. It is momentous for many reasons to me. It's home... It was the first marathon that I completed and a year later it was the one that I would put off brain surgery for, the one I would first qualify for Boston wondering then if it would be my last. Because it was sponsored by Livestrong for the next two years, it was one in which on the 3rd and 4th tries at it, I won the Cancer Survivor's division in... something I'm still not sure I've appreciated or let sink in appropriately. The next year Kiana was with me and it would be the 1st time I'd skip it to run with Kiana, her first timed race and her first 5k (in case you're wondering, she has taken more time off her 5k than I have of my marathon). But tomorrow, for the 1st time in 5 years, I am back on the course.

It's an emotional thing for a variety of reasons. For better or worse, it's actually the 1st time I've signed up for a marathon since I won the Gusher Marathon with Kiana in a stroller. I've ran several by invites and loved it but somehow at the gut level since I give speeches and there's articles etc, I hadn't been able to just totally sign up for one. I put off brain cancer surgery to run a marathon, but winning one with cancer made me the cancer guy who runs marathons... it took 5 years for me to do it on my own. I kept running tons of other distances but the marathon... it took me a while. I mean don't get me wrong, I'm still running plenty. 2017 was the highest mileage year of my life and also the 1st one I didn't do a marathon. I signed up late in the game, and while I've been running a lot I haven't been training (as in the watch doesn't come on at the track or on tempo runs), I just get out there for the run of it. I get nervous that when I was going to consciously amp up my mileage in January I had a cough and didn't do as much mileage as I liked. None of those are excuses just for the record... I just don't know what kind of shape I'm in (except for round, round is a shape).

The guy I run the most with, my good friend Chris McClung is going to run the 1st half with me. I've told him I'll do it like I do all of our regular runs where I'm not looking at the watch or the mileage, just running next to him. I'm guessing like all good friends do he'll make his pace be one that makes me less conversational than our usual runs. I also know that once a bib is on me, I can't possibly pretend like I don't care about where I stand in the race so maybe once he fades, a competitive spirit will kick in. Okay so that's not a maybe. But I'm having some fun with it. While he and I are both Cowboys fans, he heckles me over wearing jerseys because it's weird to wear some other dude's name on your back. So I wrote his name on the back of the shirt I'm starting with a shirt that has his name on it. Elaine might have digitally altered it to show which team she knows I really belong on.

But the shirt actually is significance that I'm trying to make insignificant. It is literally the shirt that I was wearing when I won the Gusher Marathon. It's sat in a closet forever, too worn to keep using. It is and likely will always be the shirt I will be seen in the most ever since that win got a lot of media coverage. But the reason I'm wearing it tomorrow is because one it gets a little too sweaty, it's time to discard it and toss it to the side to be picked up and thrown away by whoever does that at races. I've long said I'm not sure if I'm running to or from something; I'm not sure I'm any closer to figuring that out. Tomorrow however, I am absolutely running from that I am the guy running marathons to get away from cancer, I am running marathons because I am me, the guy who put marathons before he had cancer and when he had cancer he put marathons before it's treatment. Marathons are back to being ahead of cancer forever and that shirt and any idea that competes with that will lay by the wayside.

Appropriately enough part of the reason I signed up is because the course has changed. There have been people who think the course is tougher (I concur) so that's why I signed up because as I've long said if you sign up for hard things in life, the ones you don't sign up for, are a little easier. Still, the changes feel so interesting. The last time I ran the course it was just emotionally draining because it passed by too many tough places, the job that fired me, the place that I had my first seizure treatment for, a courthouse that there's been too many legal places on, the medical establishment area that I had and have way too many treatments at. Only two of those still remain and they are the two earliest and they are both within the 1st three miles... Early on and moving on. So maybe the course isn't tougher after all.

We had a Valentine's themed run earlier this week and I said that my first marathon run I did on Valentine's Day but we didn't do a single training run together, we didn't run it together, no wonder we broke up. I've learned my lesson and proposed at the beginning of a race to Elaine. We're riding together tomorrow. We aren't running together (unless I have a really bad race I should come in ahead of her) but we've done several runs together and we'll be there for each other. We have done several races and have other ones planned but we enjoyed a good dinner last night and tonight we're headed to catch a movie together to get off our feet. Appropriately enough, not too long past the finish line will be the Paramount Theater, the place of our 1st date. The Save the Dates went earlier this week so believe you me, I'll be looking forward well past the finish line of tomorrow's race.

Anyway, I've got a hot date here in a bit and nerves that I'll try to dismiss to try to get some sleep.
Let's see what happens. While I'm always shooting for my best time, I can't guarantee I'll get it but I promise, if and when I get to the finish line, I'll be smiling to still be at home enjoying my life for the entire run of it. 

Saturday, January 27, 2018

The Judgement of Solomon

A few years ago, there were multiple blog entries here about an ongoing custody case in which Kiana's mother was asking for emergency custodial changes due to a seizure I had in the middle of the run. It would change where Kiana spends the vast majority of her nights in this house,one  I purchased a month before her birth, that. reality was true both then and now. The legal petition then was that I get two hours of supervised visits because as her attorney stated at the time, it wasn't that I was a bad father, it just wasn't safe with my health condition.

Multiple hearings would take place, a couple of mediations and a lot of failures. It resulted in little more than me having to say I'd sign over access to my medical records which was fine since I'm not exactly secretive about it. It helped that in the middle of that was when I won a marathon pushing a stroller and literally my doctors would not only write letters for court but be interviewed for international media of all sorts, how's that for going on the record?

That was shortly before Kiana started 1st grade that it was finalized and now we're getting closer to her entering junior high school and we are again in a custodial legal setting pending. I am doing it pro se, fancy words for being your own laywer, perhaps closely sticking to the adage of Abraham Lincoln that he who represents himself has a fool for a client. That's easier to absorb in that I honestly believe and hope I'm representing exactly what the legal paperwork says, the best interests of Kiana.

Let me be clear, I absolutely consider the my divorce from Kiana's mother the biggest failure of my life. There isn't even a close second and I hope there never will be nor anything that passes it. Kiana's mother I mostly consider a stranger since we've spoken so little since she left; her need to disconnect continues. Still my memories of her when were together are fond ones. Kiana's mother was impressive by any standard. She did things that are rarely done in the modern age like nurse till Kiana was almost 2. With a master's degree, she found an amazing middle ground when it was time to return to work, returning to Kiana's daycare where Kiana was not being taken care of by someone else literally a moment longer than she had to and always in the same building. We were in our late 20's, all but kids ourselves. And we'd both been smart kids in high school and college, perhaps leading at least me to a hubris that cancer would shake: to be able to acknowledge outside help is necessary.

It was around that time that she had returned to 'regular work' that I got diagnosed with cancer. Perhaps with my emotional mishandling of the awareness of my mortality and the bills that came with it, perhaps compound interest of things of marital mistakes created or showed cracks, it was literally a couple of weeks after brain surgery that she left. That's all written down here back in real time. It was a tough time. Surprising me, she would sign away primary custody and I had to learn to be a dad in a way I'd never planned, single. It's turned into an amazing and wonderful experience. I still have never understood why that happened. Walking away from me is something I can easily imagine; heck I want to do it sometime. Was it a need to escape, to do her youth more 'properly, to more fully disconnect from the marriage? She would miss her first mother's day weekend and her first extended visit Kiana would get left at grandma's so it would be a while before her mother would have an extended connection, that facing of reality.

There have been a variety of theories thrown out by friends and family as to that custody case and the current one going on. It could be many things but I think it really is one thing, Kiana's mom realizes that no matter what there was about us, walking away from Kiana and missing her from day to day has to be ridiculously hard to absorb; both five years ago and now as I imagine it, let's just say I've gone to bed with less ability to go to sleep calmly than usual if I were in her shoes. Both then and now, cancer is less stressful than that idea. People refer to either as custody battles; I've never one thought of it that way if for no other reason than I refuse to see my child's mother as an enemy, or even an opponent, a basic prerequisite for seeing things as a battle. I see as two perspectives that are so far from aligning that they've resorted to something that can easily be seen as absurd, a stranger listening to you for a bit and then making life decisions for you and your child.

How will it go? I don't know. There have been people who have suggested trying to work things out and of course I have. We tried a mediation that didn't get the job done (the same was true of two previous mediations 5 years ago). I offered extra time during non school times but that wasn't accepted. Some have called me stubborn or selfish for not being more flexible during school times but it's just logistics of two parents living 20 miles apart and routine is a good thing for most of us and certainly for a child who has homework and projects etc etc etc.  Others have tried to get me to have Kiana weigh in but is it not incredibly mean to ask a child to decide between her parents and how many 11 year olds really know what's best for them?

I keep thinking about the story of the judgement of Solomon from the Old Testament. Its two mothers with a baby child in a shared household who one rolled over their baby in their sleep. They go to him both claiming the live baby and that the passed away one is the other's. Solomon's edict is to cut the live baby in half and give half to both of them. The real mother says no give the baby to her while the other mother says fine. Solomon's wisdom guides him to give the baby to the woman who'd rather give him up.

I have no idea what will happen on March 5th if we don't settle it between us before then. But I do honestly think that between being stuck in the middle of a back and forth, it would be better for Kiana to go live in a place I mostly think of her as a visitor at (she visits there often enough I imagine she's got a softer stance on it). Of course on a scale of 1 to 10 that's a 2 and her staying where she has managed to keeps straight A's and perfect attendance is an 8. Her parents figuring out after 7 years apart how to communicate better is a 10 to the infinite power. That's the argument I'll make if necessary and we'll see how a stranger endowed with legal authority weighs in.

I believe I can make the case that I should continue to be the primary caretaker of Kiana but nightmares of things like Kramer vs Kramer sneak literally into my nightmares. But if it goes from where it is now to where I become a visitor, I'll keep doing my best at being Kiana's father from that place. I hope somewhere else the judgment of Solomon comes true that if you train up a child in the way they should go, they won't depart from it.