Thursday, December 31, 2015

Happily Ever After

As 2015 wraps up, I can easily say that it was the happiest year of my life. Now I am and hope to always be an optimist, a hoper of far flung hopes and a dreamer of improbable dreams. With that said, I am not someone given to superlatives, everything is not "awesome" in my book or "wow." Perhaps it may be more revealing that one of my close friends recently "I know you don't hand out compliments easily so when you give me one, I know it's sincere"(psychoanalyze the complex that leads me to heckle the people I like the most).

End of year always lends itself to reflection for me, a natural transition into measuring time and evaluating it. One of the traditions that we have in the Leon household is putting up an ornament representing the most important event of the year or more specifically one before December. It's incredibly obvious some years (Kiana's birth, college graduation,house purchase, getting a pet, the Gusher marathon etc) and incredibly hard other years where there were so many cool things, it's hard to pick one (last year I cheated and conglomerated a few). This year was the most traveled year of both mine and Kiana's life by far. That kid has seen more of the country and the world in 9 years of life than I saw till I was a real adult. I collect a shot glass from everywhere I go and I put them together and was blown away... I am a minimalist so that's usually all I bring back with on occasion something making it in that's an additional nod but a shot glass and something that fits in it is not a bad collection of travel.

With that, I thought about making it just like a plane or something but that was a little too generic because some trips were very different. I got to do races in many states (many with trophies and PR's and almost all of them to do with someone I care about), I got to help out with a couple of cancer causes (the one to DC was a lobbying one and this year DC gave the biggest fundraising to cancer since before Kiana was born, the one to Denver was a push the clinic one where our project is working on being prototyped).  But in the end I just chose one, the trip to Disneyworld with Kiana. It was 3 magical days where the running was more like running around to the next ride or magic. It was meals and ferris wheels and a little girl who would remember it and laugh and ask a thousand questions about what was real and what was magic. It was a dad smiling back at her and hoping that she never forgets what it took me to long to learn, that life itself is magic, the joy in it, a mystical thing that you hold onto with both hands, that love itself is the greatest special effect. That's certainly true when you are thankful to have a second chance. Disney captured that and represented it the best; thus, the ornament.

Still you look back and realize that this year, 2015, your daughter did her first 10k, 3 of them in fact and won one out right. You look back and realize that your dad did his first 5 right next to your mom, 3 of them in fact and both pr'ed at all three! And we're just getting started my dad at age 70 is about to do his first 10k with my mom right next to him (she's 29) and Kiana and I little ahead of them.

You look back realize that 5 years ago you had to cancel a trip to Brazil due to brain cancer surgery. Travel was always a passion of mine but it got cut out for a few years because there were medical debts to pay and no money to spare. I accepted this and fought it simultaounesouly. I knew it was gone and yet I put up a wall in my house of a giant map of the world everywhere I'd been committed to that someday, someday there would be additions! Not all who wonder are lost was the caption and I've loved the wondering this year because sometimes wondering in the wilderness is the best way to be found.

Here, almost exactly 5 years later, I got to go see my 5th World Wonder, the Statue of the Christ in Rio de Janeiro on Christmas eve. Most everyone took the bus, we climbed it. You saw snakes and spiders and bugs and beauty. I'm not a preachy guy but when you're there on Christmas eve in a Catholic country how can you not life your hands to the sky at a world wonder, oh my and not take a second and say thanks to the King? There are 8 wonders of the world and life was kind to me in life Part I, the part before brain cancer when life seemed a little more predictable and I had seen 4. It stung to have to cancel a trip to the 5th one back in 2010 but a few thousand miles south of my home, after a few thousand miles having been run on my feet, you start to wonder and dare dream that in Life Part II you'll get to catch the other 4. One down, three to go. (Just in case anyone is worried if I was too righteous in a very Catholic country, I still would have needed to go to confession for some of the sins and vices that I took part in. Though my doctors would be proud to not have a confession needed and it was tough to do but I did not play a soccer game nor go scuba diving following my medical restrictions.) Go big or go home some day but I'd like to play by go see the big things then go back home.

I got home literally about an hour and half before Kiana came home from spending the Christmas holiday with her mom. She turned 9 the very next day. My parenting philosophy, at least outloud, and most days at heart, is first you gotta give them roots than you gotta give them wings. I've encouraged independence in her both because of the fear/expectation that I wouldn't be around and in hope that even if I was, all she'll ever have to do is let me know once in a while what she's up to. Still my hopes and definition for is that she lives an honest helpful life. These days when she decides to read now on her own and tell me about the book if I haven't read it, it's tough even for a guy with a damaged memory, to not remember when she wanted me to read to her or her to me, something long ago by the wayside at least as a regular activity. So in a move I wasn't quite expecting when I reminded her she was supposed to be a baby forever and couldn't possibly be turning 9 the next day she asked to sleep in my bed for the first time in who knows how long not on a trip. I told her just as long as I didn't have to change her diaper. She rolled her eyes and smiled. Her 9th birthday started with dessert for breakfast when the girl decided to order cheesecake with ice-cream and strawberries, an early sophistication and dress already in place (none of which I had any say in). She was going to be 8 forever in my book but I got her to promise me to stay nine at least for an extra day next year.

I don't know whether 2016 will be the best year of my life. I've never had the best year of my life happen two years in a row like it did in 2014/2015 so a 3 peat seems unlikely. That doesn't mean I don't intend for it to be a great year but just like not every race is a PR or a win for anyone, sometimes you know that great is awesome but that it can't always be the best. It's on focusing, accepting this that I'm well aware that like those Disney movies, after brain cancer, I get to live happily ever after. It took a little slapping around or perhaps brain surgery that keen reminder of my mortality to understand that phrase. I thought it was an over simplification that you got to be happy forever but happily ever after doesn't mean forever, it just means a bit more time. It's the heart condition since my mind is damaged, when you recognize and absorb happiness ever-y day. So goodbye and thank you to 2015 and I promise I'll be living happily ever after in 2016 and beyond.

Thursday, December 10, 2015

Bottom Half of the Hourglass

"They say we are what we are but we don’t have to be"

Dealing with the scanxiety of sitting between an MRI and it's results makes for longer days than usual. Fortunately I had plenty to do in wrapping up some things from the race and it's results. You try to take it easy, to remember to breathe. Someone joked when this cancer journey started that I'll do anything for attention that this was all drama. It was funny at the time but I realize now that a lot of this has just simply ended up being trauma  The people who understand realize it's a tough shift to return to normal life after cancer. When you go from over two years straight without a full month's break from medical appointments to only have having had 3 in 2015 (or 5 if you count the MRI tests as separate but to me they're one and the same), it's odd that it doesn't feel normal to have life to get back closer to normal. Perhaps it's like someone who was raised by an abusive parent or was in an abusive romantic relationship, you start to see the things that are awkward, painful, invasive, and wrong as normal. You start to perceive the perversion of things that should not happen as just the cost of staying alive.  So when they go away when someone is simply checking in about how you are down the road, the trauma, the fears, the blood boils. You want to turn it off, you try it turn it off, you try to redirect it but if there are people who get to 100% back of it well... 100% of my tumor wasn't removed so I'm not one of them. 

"I’m bad behavior but I do it in the best way"

I know I'm nowhere near the top of my game between MRI and results. Me, the guy who loves the crowd and loves people stays away from one on one meetings. I still fulfill standing obligations, I coached chess twice, made my ARC president obligations completely on time, trying to believe that the scanxiety is toned down with being a man of my word. It got built up by an odd thing, shortly after the MRI I had a missed call with a reminder of the appointment but they left a voicemail. There was another call with no voicemail and somewhere my mind imagined something they'd rather not leave said. 

I never quite know how to respond to people saying they wish me well, or that they are praying for me, or sending good vibes. I've never once prayed/wished/vibed to be one of the outliers in the survival statistics of this... I've just tried, when appropriately focused, to live appropriately, live with conviction. Honestly I've always felt guilty about being one of the survivors because if there's any karma/deity/balance to the universe there's at least one guy where places got mixed up because I've seen far better people die of this exact and other cancers and if someone is running the show, I hope they explain to someone why I got to stand longer than they did. Still, it was some comfort as I coached chess club that it was the first time Kiana got a checkmate period. Once during a school meeting with a government representative as they mentioned things that has been promised for a decade out of Austin ISD, the PTA president tried to be more polite while I was a little more direct about how I'd sat in multiple meetings since Kiana was in school with no actual changes. I reminded her and the room that this is why she was the politician but I taught kid that it's good to go after the king. I hope Kiana balances it better than either of us but between the two I'd rather Kiana measure life by results. 

Still, it's always during this time that helps me evaluate relationships. Most of us, if we're honest, know that at any given time we have less than a handful of people who we can be completely honest with. I'm not sure you should do that at all times, we invented social cues and the game for good reasons. But there should be times, people who you can break down in front of, where you're not having to choose your words as carefully or at all when life is a little extra stressful. Like Job's friends even if they disagree with you they stay quiet for a while listening and argue down the road and you know they'll still be friends after even if you're all wrong at some level. Or perhaps it's like the old saying that "home is the place that when you go there, they have to let you in." It is the place that you know will life you up even if you're staring at the ground at rock bottom. The stroller races started because my mom said she'd do her first half marathon at age 60 if I'd do it with a stroller and I started running again. So, she's who I called on the day between the MRI and the results. And we stepped up our game together as family. Last year in January, I did a half marathon and my parents cheered me to win and then I cheered Kiana as she placed for the first time in a kid's race, taking 3rd in the kid's K. This year, my mom helped me look beyond the results and all four of us are now signed for their 1st 10k on 1/10. Life isn't always clean but sometimes it's good when the family branches all grow in the same direction. I do hope that like my parents, my child learns that if you can find people who accept your humanity at your worst while challenging at its best, that's my definition of a saint. 

I’m still comparing your past to my future
It might be your wound, but they’re my sutures

Still, I was sore from all the recent races so I actually took it lightly on the workouts. It's probably no coincidence that almost every single one of my fastest time at any distance is shortly after very good or very bad news, trying to gun from the happiness fuel or gun away from the frustration.

There were still some issues though with trying to make sure Kiana stays in shape if she wants to keep doing the 10k's (which she does). So as you try to deal with the thought that an MRI may show that your path to hell is closer than you think, you try to say 'what the hill' instead and Kiana got the most hill repeats she's ever done in one day. I never did them that young and we usually do them together but this time I was more coach cheer leader... I hope she sticks with them but she liked it and said we should do that again. 

For what it's worth if anyone doesn't think running is my therapy, I did 7 races in November and 4 in the first week of December and there are none scheduled again till January. Therapy takes a break when there's less to resolve. 

I am the sand, bottom half of the hourglass. 

Then the appointment day finally arrives. It was an odd day because as school started Kiana's teacher talked to me about a writing exercise they do. Well I knew about the writing assignment but that Kiana had been writing about a child whose parent dies young; apparently there is more than one Leon who uses writing as a way to deal with worry. Her teacher proceeds to tell me about how both of her parents died at a young age and so she understands that experience and wanted to be sensitive. It certainly makes me question whether or not I should have shared as much as I did with Kiana. How inappropriate was it to take her to MRI's, to bloodwork, to appointments? Did I add my own trauma to hers? Was I mistaken in fighting for custody when someone said they should have it based on my medical issues? Are the 'seizure drills' a bad idea? 

I've been living with the reality of both statistics that the 10 year survival rate of this is 12% and that the doctor said it specifically that odds are that I wouldn't make 40 and thought giving Kiana a view of that, limited of course, was the wiser way to live. Originally when the diagnosis hit, when I put off brain surgery to run a marathon, I resigned myself to the fact that my best days were behind me. I've had so many ridiculously good days to know that's not true but even so, the day still hasn't come where I believe that I have more days ahead of me than behind me, a strange thought for most people in their early 30's, that in my hour glass there was more sand at the bottom than there was at the top. Still, when I arrived at the medical appointment, there was a new sign up or perhaps one I only noticed because of the conversation that morning about how children under 13 weren't allowed in the infusion room. 

Still when the doctor came in, he did his usual preamble of how usually the MRI's may show some difference just because you're not positioned exactly the same. However apparently this is the most consistent I've ever been because both to he and I thought they were exactly the same. So visibly the tumor was stable. And then I breathed.

Sometimes the only payoff for having any faith
Is when it’s tested again and again everyday

We talked about some of the memory functions and how they were also just not getting any better. The spatial orientation hadn't gotten any better. Oddly there I can remember old routes with tons of turn even if they are 20 miles but struggle with short routes even with few turns just because with memory damaged and spatial orientation gone. I missed some of the memory tests that we did today. Sometimes I miss some of it, sometimes I don't which is exactly the damage that I try to describe to people. It's not that short or long term memory is gone; it's that if the memories stay or they don't; always confusing to wonder how much of your life is missing.

But then we talked about something which I rarely talk to people about, that odd facial recognition quirk. I told him about the Bond girl (the only girl I've ever taken on a date to a Bond movie and fortunately this is the one Bond movie where the girl was still alive at the end). Specifically I told him about how I didn't recognize one of her friends that I've met many times when I saw her at the beginning of an evening and once again at the end of the evening. I didn't remember meeting her about an hour apart! Of course, this is frustrating and I always try to get the few people I share this with that it's not that I don't remember their name, I don't remember them. This is when he corrected me and said do you remember how you know them, the context from which you know them, places you've been at together. It's funny how I've always known that's correct without realizing it; so I do remember them I just can't recall their face and well, it took till today to acknowledge it to myself, that it's one part of them even if it's a very important part. He explained to me how that was near where the surgery was. I told him I'm still trying to do it better, to study people's faces on social media in a way that would be odd if not downright creepy in person. He suggested I tell people that when I meet them, that other patients of his share that. He pointed out that most people would be patient and just share who they are and from that point forward the conversation and playing field would be more level. I'm a guy who likes working the room so I can't imagine doing that, swalloing my pride that much. Perhaps that day will come, like the way it took enough seizures before I finally put in a reminder on my phone and a pill container rather than just trusting my memory. But, well, that day is not today.

And if we meet forever now
Pull the blackout curtains down
We could be immortals just not for long.

And then he showed why I love him (is that weird to say about your doctor?). He asked about the races and then he talked about how he had been there for the Thundercloud stroller division this year and how he looked up my results since we were both doing the same race. He asked about other races and didn't reprimand me for the beer miles. We walked about my kid and his two kids and our running times. We talked about Kiana's hill repeats and the Austin Runner's Club and how I was helping out but it was only possible because of the team and we talked about his medical team. And for just a few seconds we took the curtain down between doctor and patient and we were just humans in the same room. 

Then the nature of the relationship got restored and we started talking about the next appointment. He said that obviously I could call him anytime if needed but he hoped next year we'd only have two appointments. As much as I like him the less I see him the more I like him. At the last appointment he said maybe I would be one of the people who would beat this, something he'd never said before. At this appointment, he said we would keep it at two appointments a year until the decade mark (we're only at 5 years). Then if and when we hit the decade mark we'd make it to only a once a year appointment... I've long assumed and believed that I'd not make 40. Honestly I've never thought about a long life for the last several years, I have very few dreams that are very far out and none that are even a few years down the road. I haven't imagined paying off my mortgage, or being there at Kiana's high
school or college graduation or at her wedding; just assumed I'd left her with enough connection to keep her going. I know saying if we get to a decade doesn't create any expectations but it created hope. Who knows if those are 'true' expectations but in my book there's no such thing as false hope.

Unsurprisingly, I had two meetings straight from there, one personal and one business. The personal one was actually with a friend whose a financial adviser. I had set it because it could go either way... if the MRI/appointment had gone bad, I could ask questions about how to sell the house and set up an estate for Kiana. If it went well, then I could figure out what to do with the 'extra' money that might be there next October if/when all old medical debts are settled. I didn't take it too far in but in that context well, I thought about the question of what I might do once Kiana's done with college. The second meeting was about ARC about a race a few months away but after that one I started thinking about the race we're in charge of next December... 4 days after we finished this year. 

The italics in this rambling of thoughts have been the quotes from "Immortals." Most of humanity, myself included, are unaware of our mortality for much of our lives. Then when we become aware of it, we tend to be in denial of it, sometimes even till death. The question of whether or not I'm going to die hasn't changed, I'm still going to die whether it be from or with cancer. We want to believe we are immortal in some form. I don't know whether or not that's true, whether or not this life is it or we continue in some afterlife. I don't spend much time thinking about it. But I am thankful that at least for one more medical appointment that I dare dream that the question of which half of the sand of the hourglass is a little more vague than I thought before. Or should I just say that I'm glad that for one more medical appointment where I get to be immortal even if it's not for long?

Monday, December 7, 2015

Keeping Pace

What are the right thoughts to have the night before an MRI? What are the right reflections... what are the wrong ones? I've had so many over so many years and that's mostly the one I try to have the more MRI's I have, that no matter how tomorrow goes... each MRI of yesterday means I got more tomorrows than I suspected at the last one.

If I'm completely honest... and well I'm always that, I know that no matter how the results come in on Thursday after a very long 48 hours, I'll be relieved. Which way I'll be relieved more, I'm not sure I even know and that's no joke... Still I try to make jokes, wondering when they'll finally do a frequent flyer card at that place. It's not ever the machine itself that worries me, I've fallen asleep in it multiple times. Though while I think about that it occurs to me that perhaps the reason I fall asleep in it is because I don't sleep as well before it and perhaps it's just exhaustion.

But the pattern of therapy continues, November was the most races I've ever done in one month, 7. Though no matter what amount of races besides one, it's the first time in my life I brought home hardware from all races done in one month. Not a single race matched in distance, 10 miler, spartan super, 5k, 10k, 25k, 5 miler and the Austin Beer mile was the last one. I won the last one, becoming the 3rd time Austin Beer Mile champion... Somehow that win wasn't one my mom was proud of.

Still of all things, it led to an invitation to the 2nd annual beer mile championship. I was amused when they did an interview for their web promotion. If she wasn't proud of the 1st beer mile my mom certainly couldn't have been proud of the second one where the headlines changed  from dad runs races with beautiful daughter.. to brain cancer dude gets babysitter to get wasted after daughters bed time on a school night...Let me make it clear that I am certainly not making the case for binge drinking but I would dare say that if every person who drinks beer regularly even without changing their drinking habit ran a quarter mile for each beer they drank the world would be a happier healthier place in many ways. 

If anyone thinks those beer miles stopped me from doing anything, well the day after the first one I went and ran 15 miles. And between the two (completely sober mind you) I won a Balega Dance off at the Running Event with, you guessed it, bib #8. I won an iPad mini which went to Kiana for her Christmas present. I was just doing it for fun but when it came down to the finalists, I might have taken off my shirt and thrown it in the competitors face while it was all sweaty... luckily that hasn't shown up on the internet yet. 

But if the 7 races in November didn't show up a pattern, in the first 6 days of December, I didn't just do a dancing competition. (By the way while we're on it, I've won two eating competitions this summer and a dancing one and neither of those got news coverage! I'm not just one dimensional!). I also did 4 running races, the beer mile and 3 5ks. They were all ones I Pr'ed on or placed. But I've never been running to beat the watch, I've been trying to make the grim reaper work for it. I also was lucky enough to lead a social run with a bunch of elite runners from all over the US. Right next to me one of them was a friend from Spartan which had come in for the running event. It was the first time Spartan was at a running event, my worlds coming together in my home town. 

But it wasn't the iPad or the athletic or dancing victories that brought the biggest smiles. They never were. It was little moments like when Kiana decided at Costco that she wanted to push the cart and the more "bulk material" we put in she didn't hesitate. And I couldn't resist asking her if she would push me in the cart and somehow she did for a couple of hundred meters. Less than a week after the stroller had been retired and was in another home, roles had been reversed. I've been trying to talk her into it for almost a week now to do a race with me in the costco shopping basket but she must wear glasses form a disorder that comes from rolling your eyes at your dad. Either way, I'm not a guy who takes selfies usually but how do you pass up that type of opportunity to capture Kiana pushing me in a cart for the first time!

Still, the  idea of the MRI on some midnights weak and weary still is sitting like the raven tapping on my chamber door. There's no quite shaking the fact that no matter how many go well you keep doing them ever more, hoping that the tumor's stable, the scar tissue is the darkness and that they find darkness there and nothing more. I try to take in the joys in simple things and distract myself with the races. I am amused that when asked to keep a 7 minute pace I do so almost exactly on a day I forget my watch even if it's the day after a beer mile. I find comfort in the fact that no matter how the MRI goes, the scores are all but settled. Medical debts, if all goes well, will be done in fall of 2016 instead of spring of 2017. And if the MRI doesn't go well, finances aren't the issue, let's not kid ourselves, there's not going to be any more treatment, normal experimental or otherwise. It will be time to try accept my head being bloodied but unbowed. There were mistakes the first time I had a bad MRI, called finding out I had brain cancer, that I would literally bet you my life will not be repeated in regards to finances and relationships. 

But you have to find the simple distractions... the intensity of the races and the quickness between them almost makes me think life is normal that these distractions are they've always been, an unemployed workaholic whose made running and staying happy and raising his kid his full-time jobs. Sometimes they become personal and awesome like when you get the coolest shaped bib with #8. Or the fact that a company asks you to run out in "nude" shorts and a women's top to "be the hustle." And you know the only reason you were the first in your family to go to college and perhaps the only reason you're still standing is because you've always been hustling. I keep a frantic pace in order to hide in public from myself or others I never quite know. But I keep going, and searching because while I may have done the most races I've ever done in one week in a habit that is incredibly well, predictable, one foot in front of the other. Not one, not one was a race I'd ever done before so if you keep the system moving, the muscles and brain having to take in novelty, there is no way a tumor can grow right, it has no room to since the energy to feed new growth is being used elsewhere, right? RIGHT!?!

So the old habits continue in the right thing, with my coping and hoping mechanisms being commended, my acts of desperation that are anything but quiet somehow regarded as more socially acceptable, perhaps more acceptable by the body itself. But even the guy with the damaged brain goes through emotions and deals with them well often with music. I try to keep pace in all my races, in all of my race but that pace seems to sift on me in both. That's the latest song I've been listening to to deal with the emotions, a song called "Sifters"

What if we hadn't been each other at the same time
Would you tell me all the stories from when you're young and in your prime
Would I rock you to sleep
Would you tell me all the secrets you don't need to keep
Would I still miss you
Or would you then have been mine

I think this in relation to the odd circumstances that have become defining moments that I was training for the first ever Livestrong branded marathon when I found I had cancer... That I won Austin's first ever brain cancer research race and was it's lead fundraiser... that I signed up for a race that I'd win with a stroller just a few days before an MRI and went out there relived it was stable.

But then again I think about that no matter how tomorrow goes or really how Thursday goes since that's when I find out the results all the scores will soon be settled. For the first time I've decided not to take a copy home of the MRI since sitting and trying to analyze it myself accomplishes not much. I will try to think of post MRI things no matter what. I am scheduled to go to Brazil in exactly 2 weeks, a trip I once cancelled due to brain surgery and the passport finally has something new in it for the first time in over 5 years. I am the ARC president and the two events that I did that got me into long distance running, the Austin Distance Challenge and the Decker Half marathon, I'm the president of that club and while not by much both grew this year in both participants and financial resources and that also feels like settling the score. I wish it had been infinitely more but the final participants in the first half marathon I've helped organize for the kid born 8/8/80 was 880... Put together by many many people but 8 board members. That's  8/8/80 taken to team working making dream work. A weekend so busy where I barely had time for a Facebook status (that's seriously BUSY!) but where I'm taking comfort in that somehow we were a good team.

There is no way in which I don't think I've beaten cancer even if all goes wrong tomorrow. I've already won but I'm competitive enough to where I don't mind racking up the score for at least a little while longer. So MRI in the morning, results thursday... It's funny how I try to stay hopeful I've scheduled chess club immediately before the test and a track workout has no chance of being missed later in the day trying to remind myself that my head is on fire but still has strategy and that my legs are still what gets me everywhere. I keep having sifting thoughts as I go to sleep knowing I haven't exactly kept a constant pace but thankful for the days I got to do it and hoping as I do on each night for at least one more good day of keeping pace.