Friday, December 23, 2016

Saw that it was good

We live in an age where far too much is supposed to be epic, awesome, incredible, life changing, inspirational. Anyone whose life is that big of adventures journey, let's just say I'm jealous and not quite sure how anyone could handle that and not be constantly exhausted.

But speaking along big important lines, it is around this time of year that Kiana and I hang up an ornament representing the most important event of the year. It has gotten tougher and tougher over the last few years. This isn't because some of them have had rough spots, they absolutely have but it's because while once in a while there may be a night with no stars, there's never a full year of those types of nights. So our little tradition of hanging up an ornament is sometimes a clear outlying beacon and sometimes it's harder than others because there's too many stars in Orion and you need all parts of it to make the constellation come together.

I can say with certainty that 2016 was the best year of my life; that may seem a bit of old stale statement when I've made it when I'm about to make it for 3rd year in a row, never before having even done it two years in a row. I like to think I'm not prone to exaggeration neither forward nor backward. And I certainly don't spend a whole lot of time looking backwards neither while running or living since it's a bit of an absurd principle to trip on what's behind you if you want to keep going in the right direction. In races anyone who ever looks back at me, the chances that they are going to beat me decrease dramatically. In cancer, I run to try to keep the grim reaper behind me but you better believe I'm never giving him any confidence boost by checking out how close he is. There have been times where I was hoping he was tasting how my dust tastes but my hope these days, and there's no such thing as false hope, is that I've left him far enough behind that the dust between us has settled for a little while.

So when you've had a year where you struggled to pick pictures for your holiday card and there you had 5 places to work with, what do you pick as the ornament?!? I got to go to two world wonders. I pr'ed in the marathon and won a 5k, a 10k, a half, and multiple relays. I got to be part of March Madness. Kiana has kept straight A's and perfect attendance all year, learned to play chess, won the science fair at the District level. We got out of debt. I did the beer mile as Bond, James Bond. My family trifecta'd in the Spartan with me. The MRI's are still stable and past a six year mark. I learned my heart has more room than anyone including myself believe. It turns out Kiana's continues to show that because she learned to ride a bicycle this year and cruised up and down hills for 20 miles. Which one of those is the biggest, 2016's North Star? And once you've picked one, how do you represent it when you want it to be unique like a snowflake?

It's also a time where we wish each other a Happy (insert appropriate religious festival here from Hannukah to Christmas to Festivus etc). Me and my next door neighbor joked with each other Happy December to make sure we don't offend the other (in total honesty if someone wishes you a happy anything even if it's not accurate, I try to take it in stride. I mean if someone wished me a happy birthday on any day besides 8/8 I'd be glad they cared enough to share happiness not that they were not 100% correct on the details). So in the best and happiest year of my life, I tried to think about what brought the most happiness to the Leon household and oddly enough the answer came, like so many good things in life, from the right connection. Kiana has got a bit of an obsession with acorns and pine cones, like the dog in Up with "SQUIRREL" she picks them up inspects them and takes joy every time she sees one lights up and says ACORN! This girl has gotten to see the lights of New York, the rides of Disney, the Golden Gate Bridge, the Texas Capitol. But a simple acorn still gets her to beam and I love it. It is perhaps why children's movies like Frozen capture the reality of the little girl who sings karaoke and we make up songs about acorns and butterflies and flowers and daily life, some people are in fact worth melting for.

Because in a world where everything is supposed to be epic, I love the Genesis creation where the  story of the creator of the universe does it 'saw all that he had made, and it was good. And there was evening, and there was morning." The Guy makes the entire universe and knows thats what he's supposed to do in a days work but knows the way to describe it is nothing more grandiose than it was good. Another major religion the one who retroactively placed Jesus birthday on December 25th on a  probably connection to Hannukah or Pagan Holidays, says redemption comes from someone whose birth was considered possibly illegitimate who grew up to be a homeless preacher who hung out with the poor and unhealthy is now celebrating with hymns about Him. If that seems to preachy, let me quote that more modern theologian, Gandalf from the books of Tolkien, 'Some believe it is only great power that can hold evil in check, but that is not what I have found. It is the small everyday deeds of ordinary folk that keep the darkness at bay. Small acts of kindness and love.' I've gotten to meet serious politicians, world record holders, amazing accomplishment but for many of them just as me, it's a connection to a good human or two that motivates us to do those good things. 

Look I am a fan of 'epic' things, elite standards. It's why I run an arbitrary distance called a marathon at an arbitrary speed to qualify for Boston. It's why I sign Kiana and I up for adventures that are titled 'challenges,' others where at the end I'm proclaimed a 'beast.' But through it all, in the year that had so many of those, I love that Kiana still noticed acorns and saw that they were good. There's a steep steep hill here in Austin, called Wilke. I've done it many times, first as part of runs, then once as repeats with a stroller to see if I could handle the steepest marathon in Texas with a stroller. But yesterday, just yesterday, for the first time ever, I ran it side by side at Kiana's speed. She got to pick the speed and she got to pick the number of repeats (4). I did twice as many as her when she was done (8) while she sat and cheered me on. I reflected back on each of those and just couldn't think that all of this has helped my heart grow but we're only at two steps from the first Wilke repeat and didn't the Grinch's heart grow 3 sizes so looks like maybe I've still got room left to grow.

Still, when we got to the bottom of the hill after it was done she noticed a bunch of acorns on the ground and literally grabbed them by the dozen. I am a fan of both the discipline approach in running and materialism so I told her she could only take one home. Somewhere she's realized that life lets you bargain and I'm okay with her questioning authority (including mine) so she ended up with two and we were both smiling as she got them back as she entered in the car. 

So when tomorrow comes we'll be hanging out with my parents who just celebrated their 30th anniversary. We'll be hanging out with my grandparents who are over 60 years of being married. I'll have both of my brothers and my nephews and nieces and cousins and uncles. We'll have some tamales to unwrap and a few hugs to give. But in the middle of it all, I'll take a short short moment to hang up an ornament that someone who is a saint, someone who noticed Kiana's enchantment and turned a pine cone into an angel and it will represent what will be the best part of the best year of our life. That even among epic, awesome adventures we still notice that its the little things that make us see that life is good. 

Tuesday, December 13, 2016

The Enemy of Growth

JFK once said, "Conformity is the jailer of freedom and the enemy of growth." I am not much of a conformer. In fact for a guy who likes to plagiarize, I mean quote people, one of the most oft things I say, "The reasonable man conforms to the pattern of the world, the unreasonable man demands that the world conform to him; therefore all progress depends on the unreasonable man." But while that romanticizes non conformity, it takes a simple look at any days headlines to know that sometimes non conformists are the enemy, the danger. So conformity, like so many of life's beautiful things whether it's good or bad is not a black and white matter.

It's a gray zone which is also the case in the gray matter of my mind. The MRI results were relatively stable with the doctor going over all of the measurements as he always does. Showing that there was a slight growth in one section from 13.66 mm to 14.01 mm. My neuro oncologist said it wasn't enough to where he was worried about it and somewhere you understand and somewhere you go well why was it enough for you to mention it to me. We did some new memories tests and I told him about some of the ways I keep learning to cheat with iCloud, and iPhones and help from people where I hide it well. Some people spend their money and time doing makeup or hair to look better or hide aging or damage.  I spend it working on memory, spatial orientation, face recognition. We fight the damage of our mortality perhaps with as much conviction as another Leon sought the foundation of youth. 

We measured different things. My resting heart rate is still 42 so I've managed to continue to have the answer to the ultimate question of life, the universe and everything, at least in my heart.   I also managed to 'not age' in one area. They weigh me at every appointment, something I rarely do despite a scale in my bathroom. The medical scale is a little more precise there I imagine but I weighed exactly the same I had six months ago which got my oncologist to joke that maybe the scale was broken. No in the end he did manage to congratulate me on not letting the 'weight creep' get to me. There may be creeps that get to me but that one I've avoided... so far. He asked about my running life which is perhaps how I've not gotten any fatter and I talked about how there were still some wins and some PR's but that it was getting harder. 

He's talked about how he now runs up to 10 miles with his kids in a stroller and the section he doesn't like in that loop is the section I didn't. I told him about Kiana's races and mine. It was an appointment that was awfully close to lunch and while there has never been an appointment where he seemed unconcerned, this was the most relaxed time and longest conversation we've ever had during a medical session. We talked about a couple of mutual friends and even about my dating life which is of course all sex, drugs and rock n roll. If you want more details about that, just ask him oh wait there's that doctor/patient confidentiality thing. 

But he told me about the details of research that keep emerging, the progress that we've made on both learning more about brain cancer and where it comes from and where it's going. It's funny I have a cancer that we knew very little about when it started for me, at least not in a way that was being shared with patients. It had no known dietary, lifestyle genetic or environmental components. We've figured out a genetic component but it's not a gene that is passed down just a genetic abnormality so it's not much progress. But it turns out that there are at least two very different variations of this tumor, one of which is more likely to not grow as long as the body and brain are getting enough varied stimulation. In my public speeches, in this blog, in that hope that floats in me, that thing with feathers, I've long said that perhaps, perhaps the reason this hasn't grown hasn't just been the running, the thing that everyone knows me for. It has been that I've kept running and running harder but also perhaps, if not more so, importantly I've added a new exercise approaches every year  cycling,  spartan, crossfit, swimming, trail running and basketball. I want there to be an enemy of growth in this area and I hope it's that I keep making the mind and muscles take on new challenges and the good brain cells are using up too much energy so that the tumor doesn't have any to grow. There's not enough left of my tumor cells to do proper tests on them but I'll keep conducting tests in the field since they can't be done in the lab. 

The end of year tumor check up, MRI whatever you want to call it is always the toughest. Perhaps it's because it's interrupting the holidays. Perhaps because it's so close to when it all started, November 5 of 2010 it brings back many bad associations (Put the emphasis on the beginning of that. There are ways where a bad ass is a good thing but this is not one of them and I prefer nice ass...ociations anyway). But it's not the only place where the patterns were tweaked and changed for the better. 6 years ago, this weekend would be the one where the ultimate community would throw a hat tournament to help with my medical bills. This year Huck Cancer was putting it on to benefit Livestrong. There was a friend who was there for me at Duke and another who had flown in for the tournament. They didn't know each other back then and now they're roommates. There was someone from San Francisco who helped put together the tournament and a friend who helped teach me about proper bicycle maintenance and basketball and now we were all part of the same tournament where each of us shared why living with cancer has to be fought with more than just medical approaches. The person who they started the tournament for in 2010 has since passed away from Brain Cancer. When it was my turn to speak, I mentioned the name of the organization, Huck Cancer and acknowledged that the emotions that from that reality rhyme with that. It is my sincere hope and belief that both tournaments 6 years ago and a few days ago were ones that in the end were both beneficial to individuals and the greater good. 

6 years ago the day after that tournament I ran a half marathon in my fastest time ever. They had randomly assigned me bib 911 and I joked that they saved me the hassle of putting the emergency number on the back. Now I was the president of the club that put on that race, assisting the director put it together. I'd gotten up at 6 back then to run. I'd spent most of the last few days organizing it and somehow I was just as happy at the finish line holding the tape cheering and watching as both the men's and women's course records went down in the same day. Both to me were signs of very good growth. 

None of it, NONE of it came alone. There were signs of measured grown in that I didn't shy away from being from people that I care about before the MRI, between the results or after it. I certainly am not perfect and am still pretty damaged in the area but I honestly believe this is the best by far I've ever handled the pre during after MRI period. Those PR's matter too. 

The night before the MRI I had a meeting about that half marathon and it took me a second to shake the rest before addressing all the crew that would put it together but ultimately I reminded them that the shirts mattered, the timing mats, the finish line, the food but it was because for a lot of people this would be their first half marathon, or their first medal or their toughest one. If nothing else for all of them it would be their latest one and each day, each race should be special. The details matter of course but it's because each detail makes the angles, the direction that whispers itself into a beautiful picture in just the right language. The race grew in both registrants, finishers and what we will get to contribute as a non profit. We had the crew to get that together. Or as our race director likes to say  teamwork makes the dream work. There have been some very good dreams coming to life these days.

I was not nor likely will ever be completely selfless. I snuck into the Brown Santa 5k which was the hilliest short race I've done all year. I did it last year and took 2nd. This year I snuck in and won it in a faster time. But we were there cleaning and tearing down after it all and I saw the small tweak we'd make in the shirt. It's called the Decker Challenge but we'd snuck in 'your limits' under it to tweak it to say 'challenge your limits.' The tumor did that in a few ways a few years ago. Me, my friends, my family, the people I love we've challenged it back and we are winning. 

Tuesday, December 6, 2016

Not Yet

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

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

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

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

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

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

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

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

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

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

Monday, December 5, 2016

Grown Up Child

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

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

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

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

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

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

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

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

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