Tuesday, December 23, 2014

The Most Wonderful Times of the Year

Tradition! I think as I fiddle through life, it's probably one of those things that helps you keep balance once in a while. So as Christmas Eve settles in, Kiana and I will keep a tradition that I've had pretty much my entire adult life, we will hang up an ornament representing the most important event of the year. In certain years, there is no competition, the year Kiana was born, college graduation, first puppy, and last year there was nothing that could have outdone winning a marathon with Kiana and what came with it.

This year was hard! Kiana did her first 5k, she won her age group in her 2nd one, she had some impressive school projects. I won a few races of my own and taken on new challenges in a triathlon and a duathlon. There were some incredible special people that entered life who have definitely framed lasting impacts. It was the most traveled year of my life (and Kiana's too who has seen more of the world since we won a marathon than I saw in my entire childhood). If getting the holiday card down to a few pictures was tough... getting it down to one ornament was much tougher. Over the years, the ornaments have been hung (and taken down when we leave) in hotels, other people's home because we have no tradition of where to be for Christmas but sometimes even when gifts are left back in our home to be opened when we return, the ornament comes. Because if nothing else, every year no matter how good or bad, you get to hang out with a memory of a good time, a good thing.

But without further ado (drumroll please), the ornament this year is... cheating a little. It's five ornaments in one! Appropriately enough, they are all from races but each one of them is a Spartan race. My friend Cookie from Spartan helped me "materialize" the concept (who wants a cookie). In chronological order, let me share the 5 parts of this ornament with you. Trimming the edges are finisher medals for the Austin super, the first spartan obstacle course (and only one of two) where I got all the obstacles. And like too many races, the first time I did a Spartan I went alone, this time it was more than one carload from my running group, still slow on the uptake that challenges and obstacles are better when we share the course. Appropriately enough, the evening of the race was finished with a dinner with friends both ancient and new.

The second part is the California beast medal. I in fact did not complete all of the obstacles successfully on the first try but I did my burpees and snuck back into the line and did it again (risking burpees in doing so), 120 burpees later. I enjoyed a trip where I made some new friends, three from Austin came with me, reconnected with some of the Spartan ones from 2013. It was also great that I saw several from college since I had studied in Napa Valley. The guy with a damaged brain was grateful that some of the friends he saw included the professors who taught me not just what to think but how to think for the first time in years.

The third part of the triangle is the Spartan sprint that I went to in Portland to do with my brother. If I had to have gotten it down to one ornament this probably would have been it. Because this was the race I did this year where my mom, my nephews and niece were all there. It also was my little brother's first race of any sort. And we did the obstacles, the burpees side by side which would have been a pleasure by itself but in my mind I realized that while there will be plenty of times where we're cheering on each other in our separate future adventures (he's not crazy enough to run a marathon, I'm not crazy enough to do some of the stuff he does on snow with boards), but it was cool to do one with him. It also has helped me sleep better at night that with that event, all three of the people who came to cheer me on at Boston, my mother, my brother and Kiana I've now done an event together. By self admission my little brother had mixed feelings about getting whooped so thoroughly but showing that we share the same blood, when they announced the date for next year's event near him, 8/8, my birthday, he said I should take it as a sign that we're supposed to do it again. And if there's no greater sign how much my mother loves she kissed me with affection while my face was all muddy. Kiana was there cheering and that may be the softest peck that kid's ever given me ;).


The center piece of the ornament, what binds them all together is the kids medal. Kiana would actually do the kids course twice out there in Portland with her cousin. She'd finished her first Spartan a few months before crying but this one she was flying and smiling at the end. Anytime Kiana's smiling like that it makes me smile bigger than anything else. It may be a competition as to who has more happiness from it and that's a race I wouldn't be too bothered in taking second place in.

Last but not least, in what is the biggest medal I own, it actually all hangs on the "necklace" from the charity race which team Epic Strong was able to defend and win $4000. That team had Alexander Nicholas who had introduced me into the world of Spartan, it had guys who have beaten me time after time, women from the great state of Texas all of which have also beaten me. We even had one kid from the area that I'd won the marathon at. I've handed out medals in a few places but that was learned from Alex who guided me through my first Spartan and then medalled me. I've encouraged people to sign up for their first race or athletic event or even just to walk more because while different levels show different levels of insanity, there's no one who couldn't use a little stronger heart and muscles.

Where the check itself went was pretty cool, to Livestrong, an organization that has helped me and thousands of other cancer survivors make cancer more manageble because it doesn't come easy. So this round ornament, I hope represents somehow coming full circle both literally and symbolically. It shows that the best year of my life, the most wonderful times. It was the year I was in the best shape and got the fastest times in pretty much every single road distance was shared with friends and family and passed forward to other people who I will likely never meet just as those who had provided while angels, are strangers. It certainly feels appropriate because I still hold close to my heart that if you sign up for some messy tough things in life, the ones you don't sign up for, are a lot easier to deal with. And it was great that it was done with people who whether they are friends or family is often indistinguishable. More practically speaking if you build some upper body, something I often neglect, it probably helps to push a growing kid and keep holding her up.

So I'm grateful that an ornament was created representing in a single thing events that represented friends, family, exercise, travel, giving back but as 2014 is wrapping up... and actually the first few races in 2015 are all road races with Kiana either behind or beside her... but as we hang up this ornament, I probably need to sign up for a Spartan or few (actually some of the people from both the running world, my family and the triathlon world I joined are ahead of me in signing up). But we'll worry about that on boxing day because on Christmas eve, I have an ornament to hang up and I am here with my family and we've got some tamales to get ready so we can unwrap them tomorrow.



Wednesday, December 17, 2014

Ruining Hell

During this most wonderful time of the year, I continue to wonder different organizations have been
kind enough to let us share their message or why media covers the story of a guy known for putting one foot in front of the other. Last night I helped speak at a running event for marathon kids since I'm one of their parent ambassadors. Kiana and I are currently on the cover of livestrong.org for fundraising (but if you're going to donate, donate to my fundraising efforts for the marathon since tax things are just around the corner and I'm just a few hundred shy of rasining 5k for Kiana's 5k http://www.livestrong.org/fundraising/kianaleon/-. But the thing that I am often curious about far more than that is how the universe has been kind enough to give me such good people as friends... that actually was not much of a mystery to solve because it became obvious that with who I am only the absolute best people could put up with me.

I'm a man usually made out of discipline in many ways and obviously the fact that I speak in public events knows that I know when to reel it in in front of a crowd but there are times in person and sometimes on social media where I can't resist. I fixed my own toilet for the first time entirely by myself recently, without the instructions, or youtube, or anyone's guidance because that's the definition of manly to not get anyone's help ;). A couple of weeks later it's still working but my first through both out loud and shared and tweeted etc was, I just fixed my toilet... shit's about to go down. So because I'm also known for that kind of silliness... and for this type of blog, sometimes people share things with me figuring the guy will give them if nothing else an honest opinion (I take that as the highest compliment when people say they ask me what I think because they know I'm one of those friends who will give it to them straight about what I think about their girlfriends, job decisions, etc). Still when a friend not too long ago was making some inappropriate
remarks about their inappropriate actions, I couldn't help but heckle them, "You know you're going to hell for that right?" They wittily responded with "Some of my favorite people are going to hell." I returned with the banter of "Some people you really don't like are going to hell too." Without missing a beat she said, "You just ruined hell for me!"

Our communal activities towards the end of the year from Thanksgiving to Black Friday to Christmas to New Year's often says much about us. Our shopping habits sometimes show our affection or practicality, at other times it show off our diving into a bit of materialism where black Friday is for some of us the day after we say how grateful for what we have we go crazy for wild deals. In extreme but too common case , we spend money we don't have for things we don't need to impress people we don't like. While the calories are probably more than anyone could burn off, I do love how much the getting together happens, the holiday
parties that are classy, the ones that seem entirely appropriate for trying to keep pace around the celebration of the First Noel with ugly sweaters and red dress run (speaking of witty, I loved when a friend said to me when I said I didn't have an ugly sweater that I could just bring a sweater since I brought the ugly with me). With the red dress run (it was a charity race for all of you who thinks this means that the sexuality found in the left temporal lobe finally got affected), I thought people would be proud of me for wearing matching shoes but instead I'm getting their therapy bills forwarded to me for the nightmares it's causing in people. But with all of these things, the meals, the goofiness, for me the events are just the excuse and getting to see good people relaxing is the true reason. 

And still I keep running but with my first duathlon the day after the dress run, I realized I'm pretty happy with my running finally perhaps because I finally figured out what (I hope) I've gotten right about introducing Kiana to running. You see me for me running was taken away as purely fun relatively early in life. I got spanked for running in 3rd grade in the hall and that's what landed me on the track team (I'd get spanked again for running in the hall in 7th grade so I don't know what your thoughts are on corporal punishment since I'm still running but then again, I'm not doing it in the hall anymore). But in the sports I played in conditioning was used as a punishment for getting things wrong (you made this mistake go run extra, I'm not quite sure why we don't say hey you got that right, practice getting it right). So an activity that we all try to do shortly after we start walking somehow gets a very negative association too early which for me was a spanking and disappointment if I didn't win. It's an association I've never quite completely shaken. 
So to share more briefly what I said with the marathon kids group last night, I've tried to get Kiana to embrace the love of running for many reasons. One is that it's something we can do together, two it's an activity that while I'm part of a running team, no matter where I'm at or how much medical bills or races are, you really do only need the basics to do. I thought I had arrived at "teaching it right to her" back when training her for her first 5k on a day she was supposed to do 2 miles (the longest I was going to have her do) she ignored my "coaching" and did 2.5 miles that day. Then again, I thought we had arrived when did a 5k side by side but while she smiled at the running and the medal but soon after she was playing with the hula hoop. I thought we had arrived when in her second 5k she had won her age group by 7 minutes! But it turns out that she was and is still teaching me because if there's any moment from all her runs that I can think of when I'm fairly clear that we've arrived, it's when at the end of the latest trail of lights run, when she had run the fastest 2 miles she'd ever ran, she cried because she couldn't get back out and run it again (we'd run again the next day). She didn't care about her time, there was no race, no medal, she just wanted to keep going because it was fun. I don't know when my fastest running times are behind me but that comes for all of us... and I don't know if Kiana will always keep the love of running but I am glad she has it at least for now for it's own sake. Because I hope she keeps the perspective on running and exercise that she does on life, love, relationships. I hope her perspective is not the one we often ascribe to movies or tv shows that they are made or broken by the endings but that it's more like a good concert or a good song, you're not just worried about the last note, you want to try to enjoy each and every beat, every step of the dance.

So I am going to keep signing up for new adventures. I tried that duathlon at Circuit of the Americas with team Radioactive which was the toughest short course I've ever ran and I have no idea how those drivers go around those curves at the speeds they do cause I was pretty scared and I was barely breaking 30 miles an hour. (I am actually not quite sure what it says about me that I am more comfortable in ugly sweaters and red dresses than I am in the tight fitting duathlon triathlon outfits).
I took10th overall and 2nd in my age group and I got appropriately whooped. But my annual most important event of the year hung up on Christmas eve ornament is almost ready but it rhymes with that. There there running events out there, all of which I would have been in the top 3 spots, some of which I would have won but even knowing that I'd do the duathlon again, still believing that if you sign up for some challenges that the ones you don't sign up for are easier to deal with. 

We all have faults and inadequacies. In the categories of people, I probably fit in with more of my friends are the ones with high goals that don't recognize their strengths and are sometimes very focused on their weakness but we keep trying. One of the ladies from my church said she would run her first race, a 2 miler if I'd sign up for some things I need to work on. I accepted that deal and now she's looking for a 5k to make me work harder. I would worry if I became in denial of where I could improve and just wanted to become idle in past good stuff. I am incredibly grateful to be standing at the strongest point I ever have at the end of a year but that was not true in 2010, or 11 or 12 or 13 even if they were each a little stronger than the one before. 

While I go to church, I'm not sure I know what hell is but just like my friend I wonder if heaven or hell would be ruined if the people I liked were missing or the people I didn't like were present (that may say why we think one is easier to get into than the other). But if you'll allow me a simple expression of my religious beliefs, I don't think it's a place where people burn forever. If the Guy who runs the universe created a place where people suffer longer than they could cause suffering on anyone (since that would be eternity), in simple frankness, that's not someone I could love or would want to spend much time with. But our sense of justice comes from somewhere and we hope somewhere the unfairness of this life is punished or rewarded. But perhaps, as people reach out to celebrate Christmas or Hannukah or festivus, one of the things they  have in common is a getting together to celebrate the human connection, that the heaven we feel we get sent to is when we're with each other. It is perhaps why we fear death so much and want to believe or embrace eternal life because with people you care about, no joint time could be enough and you wish the separate ones would be shorter.  While life can get in the way and is not controllable people, to me the people who are the most heavenly people are the ones who are working on it in the here and now and not just waiting till after life. I loved this weekend because in my house or bars or running events I literally saw people from the vast majority of aspects of my life.

Still there are certainly times over the last few years, big events where life felt like hell. Hospital stays, ambulance rides, brain surgeries custody hearing, divorce issues, work problems, financial and heck even during some of the athletic training.  In some of those I reached out for help; sometimes the right moment was when I was reaching for someone and they showed me to how to step for myself. In others, the universe was kind enough where I had stubborn friends who literally showed up at my doorstep and got as close as humanly possible to leading this lion to water and making him drink. And I think them doing so helped me incredibly to put out of those infernos. So they helped take me out or at least through many of those hells and if anyone wanted me there, I thank those angels for ruining hell for them.

Saturday, December 13, 2014

Resentment, resolution and resetting

The early Christmas gift I referenced from my roommate in the last blog was a new laptop, a MacBook specifically. If you think all of my travels are self financed lets just say the previous laptop was older than brain surgery. I actually joined the "smart" world back when brain problems started because one of my neuropsychologists recommended an iPad and some scientifically developed apps that would help restore or at least reveal the memory and language issues.  I could work on it in a way I could turn it on in a car or waiting room faster than a laptop or even pen and paper couldn't quite provided. I'm old or old school enough to where it took brain cancer for me to get internet access at home so that I could more properly research it. And it was a year with the iPad before I'd get an iPhone, smart phones still something I'm suspect of when at restaurants everyone at a table is on their phone instead of talking. I know there's entire classes on emoticons and non verbal communication but I still like the sound of people's voices and I don't quite understand the crowd where that seems like too much work across a table. I've joked with the people who have sent me handwritten holiday cards that I am confused as to how officially like it. But at the end of the day I love stuff like that... perhaps revealing that I am old soul even if its an immature one whose letter to Santa is questionable.

But in trying to make the transition from a cursed dell to a blessed Apple there was more emotion than I was ready for (I might have hinted to anyone in the world that my next computer would be a mac from the sticker I'd put on over that Dell). Transfusing the videos was relatively easy since I rarely do video. The pictures were overwhelming to say the least because they went back exactly one decade to 2004 when I got my first digital camera. They say it's a good exercise for all of us to predict where your life will be in 10 years... There are zero elements I would have gotten right. I mean I definitely wanted to be somebody but had I known what the world was going to have land on me, perhaps I should have been more specific. But there were pictures of the South Pacific, of Australia, of Peru, of Kiana literally from day one with both of her parents throughout the 8 years that have gone too fast till a few days before with her and I. Perhaps reflecting that I used to be a yearbook photographer or just how cute I think my kid is there were literally just slightly over 40 thousand pictures. For the guy who quotes songs on here regularly there were a few thousand songs as well... (If you think I bought all of those on I tunes, I ran over bridges in several cities in November; pick your favorite and I'll get you a good deal.) But the songs and pictures reminded me all the laughs I've had in the last 10 years including the 4 with cancer even if they were filled with cheap music, fast drinks and live women ;). 

But the real challenge I created from my computer ignorance of apple or perhaps computers period was that I didn't set up the gmail connection right and chose to delete all emails that were archived. Short version is that how I did it erased every single email I've ever kept archived. While tons that were spam or junk, they were however all together in the new program. I would spend two hours looking through them and restoring some but I could only view 20 at a time so it was not entirely pleasant. Actually it was an exercise in resentment... Not in the English meaning of resentment but in the Latin origin which translates into sense once more or feel again  (ie reinstall).

The simple truth is I didn't keep a single email ever before brain surgery. I used to have photographic memory back then... perhaps I still do, the film is just gone now. But I'd kept many from the divorce in what can be best described as confused intention. The simple truth is that my parents were not together for very long so I know only formalities (and one obvious reality) about how they interacted that is not told retroactively. So while it was tempting to burn every picture, notes etc between Kiana's mother and I (we were high school sweethearts who had been together for 14 years), I packed it all up in a box so that Kiana could look through it someday; it's still there and if she ever gets the curiosity of seeing her parents flirt, she'll have. It's sat undisturbed. While I hadn't read them since then and the emotions had been put aside if not forgotten, I also kept all the emails for the divorce proceedings, some of that was for memory reasons, some of it was legal reasons and some of it was because I wanted Kiana to know that I tried and that her mother had quit very easily and see it in each of our words. I am grateful that the specificity of self perceived righteous indignation will not be necessary and it's a good thing it'll be impossible.

But there were many many other emails, from various relationships and different points. It was comforting to see some old emails from friends and family that had sent some very heart felt sentiments when this journey started, some were tough to see how the relationships had shifted, changed, faded just because of circumstances. I still have friends from every stage in my life and I"m a fan of keeping them. Many (most) of these blog entries have nods, winks, nudges to people that to spell them out would probably be too long but they usually get it but it's also a way for me to test my memory when I go back and read them. But those nods were all spelled out in emails written to myself and now it will be only memory to test. Oddly enough it was harder to find the more recently received emails because there's so much more emails I "subscribe" to now. I do wish I could find all the funny personal ones both new and old because it seems a little bit of insanity runs in my circle of friends; unfortunately, instead of running, insanity took a stroll near me and got to know me pretty personally. 

After spending a couple of hours going through all the emails, I made a strange decision, I erased most of the ones that I had sat through and found except for ones that had possible measurable ramifications to the future (i.e. legal decrees, medical records). At the end of the best year of my life with the least medical appointments since 2010, I realized while I would have never gone and done neither brain cancer nor the deleting of all those emails, well it had happened and it was an opportunity to rest. I try to live in the present and for the future, no matter how good or bad the past has been. I'm proud of my running times but I am more proud of the fact they are still improving. I am proud of Kiana's progress but I want to keep challenging her. It's why I took on new challenges this year like my first triathlon in which I placed despite coming in 114th on the swim (but perhaps showing some awareness, realizing how bad I was at the swim, tomorrow I'm doing my first duathlon, run-bike-run). 


And I'm starting to think about New Year's resolutions as the year resets. I achieved 6 of the 8 for 2014 (I've never achieved them all in any year). The biggest one that I had made was one I didn't get to which was to try to get to the Grand Canyon this year... there was never a time where it was necessary, it didn't quite feel right at any point either thought a couple were close. 

So while I'd never kept a diary, the history of the last four years will primarily be this blog, social media, pictures and songs. Most pictures I take never are seen by anyone but I"m grateful for a bit of a photography background. In simple frankness, you can tell exactly how much something messed with my state of mind by how many songs are associated with it. So the memories aren't going to be totally gone but they will be filtered a little more retroactively and only in non verbal communication.

As importantly, I also used all my frequent flyer miles to do something I haven't done in way too long, I got a plane ticket to the northeast for New Years in the first trip in quite a while that has no race or anything to with cancer. I can't ever stop training but I think it'll be the longest I go without having to set an alarm clock in well over year. I'll be doing many things and catching many places but one of the ones I'm excited about is a return to NYC. While I try to take the wisdom of Elton John and rarely do things twice because there' more to be seen than can ever be seen and more to do than can ever be done, I'm excited about this trip for many many reasons. But one highlight is that it's going to be a sweet moment when I step there that it will become the place I've taken the most trips to surpassing Duke. That's not superstitious, just a simple acknowledgement or gratefulness that the place I traveled to for cancer is not where I will have visited most frequently. This started with 22 months of straight medical appointments and this year there were only 4 months that had any which is a relief. Anyway, all the details aren't worked out yet but who wants to bet me that I can find a girl to kiss at midnight? In 2010, when this all started I didn't go out for New Years because that had been the best year of my life back then (I've had many good years but to call one the absolute best takes a few special things) and back when 2010 ended with 2011 brain cancer stuff coming... I thought it would be (and it was) a much much worse year. But here at the end of the best year of my life, I'm excited about the transition believing 2015 will also be a great year and we'll find a way for it to come in with a bang. And it's an interesting thing that by the emails being gone that a whole lot of the past, the details of some of those dreams are erased. But whether they were great dreams or nightmares, if you focus too much on past dreams, in my book that's getting in the habit of oversleeping into life. So I want to keep focusing on waking up to making new dreams.




Tuesday, December 9, 2014

What the Fates Allow

It was almost exactly one year since two MRI's ago but the last one was before any of the Christmas stuff had kicked in for me so somehow I hadn't gotten into my listening to the seasonal music which I usually do after Kiana and I put up the tree. This MRI result appointment was after that and as a good friend called and said please let me know how today goes, A Merry Little Christmas was playing in the background (https://www.youtube.com/watch?v=nZ6yQgBvuoI) and I couldn't help but respond, "hopefully the fates allow us at least a few more years."

I have a more structured what I do before and after races than what I do before and after medical appointments. But I headed out to a run... I was pretty sore from the Decker challenge so I was going to just do an out and back for three miles, maybe 4, seeing how the body felt. Somehow in the middle of the run I remembered that well, I ran 4 miles to celebrate arriving to the 4 year cancer anniversary and I said, I'm trying to get at least five years with this thing so I ran 5 miles listening to more seasonal music...

I've always loved being busy... I am not good at standing still. But I had to cool down some after the race and just kind of sat at pictures. I looked at one of Kiana celebrating having made an ornament from Saturday.  And my friend and roommate Randal had come to the MRI to watch Kiana. While she's regularly seen all of them on CD, this is only the second time she's ever been there for the full MRI. She at first watched and then looked away when the needle was going in and luckily someone caught that moment from the picture. She would be interested in the machine a little bit more but in
between it all she'd keep going back to reading. We try to make sure we do something extra fun around the appointments she comes to so that while she realizes I have to deal with the hoking and poking, well, that's not what it's all about. I've been criticized by a few people for doing that but I think as much as I've put myself into being part of the community whether it be in fundraisers, Livestrong, races, and media, I want her to have a concept of part of it all. More importantly, if and when the results go bad on an MRI, I want her to have some clue... I don't know...is that bad parenting? (Perhaps the bigger clue of how bad of a parent I am was that for a biography project she had originally chosen Katy Perry but went back to someone similar a few decades earlier, Frida Kahlo whose art has at least lasted longer and made unibrows sexier).

Still, I can't say that this was the sharpest I've ever been pre MRI. I'd spent as I always do way too much time looking at the images between the MRI and the results. However, my habit is the same as what the doctor does to look at the current one and the previous. For some reasons, I couldn't find the recent previous ones and the only one I could track down was one of the pre-surgery. I literally cut and pasted the tumor section on a presurgery one and on a post surgery one, knowing that they couldn't possibly be the same because surgery obviously affects the brain. They looked so different but to me the MRI from Friday the tumor looked so much bigger.

 Anyway, on the way to the doctor I made an unexpected visit to an Austin spray paint park where the art regularly comes and goes. It's a place where it's allowed and encouraged but by the nature of the place, perhaps life life, it's temporary no matter how beautiful. It was only my third time to a place I'd never heard of... reminding you that sometimes you find beauty in unexpected places. But also reminding you that no matter how impressive it is, it's not designed to last forever since one of the pieces I saw the first time would be sprayed over by the second time. It was not a branch but an actual olive of love. I went not too long after to see it sprayed painted over. Now in an unplanned stop it was gone altogether and replaced with a whole new set of very different artistic beauty.

Still when I finally picked up Kiana from school and headed to the appointment it was what was going through my  head. And I hoped the only new thing in my head even as I looked once more at my obvious (to me anyway) not the same as before tumor. The doctor came in and immediately shared that everything was stable. I took him at his word and breathed for the first time in a few days. (I guess I'd been breathing while pounding during running and putting up the Christmas tree with Kiana but I really don't remember that part... must be the bad memory).

We would do the pulse (mid 40's) and the basic tests. He would ask about seizures and I would mention to him the one time since I last saw him where I forgot the meds twice in a row and almost had a seizure but recognized it and headed home. He asked if i was throwing up from the meds (it hadn't happened in three weeks and it's been happening less frequently). It had happened after the MRI as usual (which by the way I have no complaints about because with that metal dye I actually feel better after I throw up rather than sitting there with that feeling) and after the half (though it's debatable why I throw up after races to other people). I told him that I'd ran my fastest mile and marathon since I last saw him so obviously being away from him was good for me. And I reminded him that when he let me start driving again, I'd brought a bowtie to clip on and we took a picture together. I shared that I've grown more sophisticated since then and actually worn bowties twice properly since then and gave him a bowtie for Christmas. He asked if I had any questions and I showed him what I'd been looking at. He thought it was good that I look at them myself while my roommate was in the back shaking his head (I let them both know that Texas law lets me and no one was going to speak for me on that one and it would keep happening). Still, he showed me pre and post surgery MRI's and while there is change what to me was a bigger tumor he explained and compared why it was scar tissue from the surgery not tumor growth.

The next MRI was referred to at the office but the next appointment was set for June 1st and by 10 am this morning I'd set the MRI for May 31st that way, so that (I hope and dream) this is something I don't have to think about as much for a while.  In the end, I high fived Kiana and continued breather. My rooommate delivered an awesome Christmas present when we got home and said he was going to deliver it after the MRI no matter how the results and that I should go out after Kiana got to bed (I did to a fun night where let's just say leave it at that the results were absolutely nowhere near the best part of the day including catching another part of Austin I never had). While I'll be running plenty between now and then, I'm thankful that for right now our problems will be miles away.We went out for dinner and homework and reading as a way of hanging our shining star upon the highest bow. So I'm thankful for what the fates allowed. And while they do, I'll smile and muddle through somehow. But I imagine we'll have ourselves a Merry Little Christmas now.

Sunday, December 7, 2014

Accepting Change


Neibuhr is quoted for that famous prayer of asking for help in accepting things we cannot change. I suppose that can be the potential for the beauty and/or disaster of prayer is the idea that our requests can cause change in the universe to bend to our will. I've never prayed that particular prayer though at some level it can be a helpful attitude. Still an attitude I always admire in what we should desire out of our lives, out of the universe, is similar: we should work on changing the things we cannot accept.

I always appreciate the kindness of people who reach out when it's obvious I'm stressed with upcoming medical tests, races, media, life. I don't know that I always handle it well... in fact I know that I don't always handle it well but I try to always appreciate the kindness. So while people responded well to that E60 was coming out to watch the weekend's events that was by far the least consequential part of it (in fact the only change that inspired was be making my bed since my mom would heckle me immensely if somehow an unkempt bed by her son was shown but just for the record I rarely make my bed). The changes we made this weekend was getting our playlist ready which started with a first holiday music. It was some very intense but creative interpretations of Christmas classics from Frosty the Snowman, to Santa Claus is coming to town, to Rudolph the Rednose Reindeer and even Mary Did You Know (While it's a creative song, I think most parents know when we kiss our babies we have kissed a gift from God). Kiana made it clear between the beginning of holiday parties and picking out our outfit for one of the races which one of us was getting presents and which one of us was getting coal.

Still, the next day a strange thing happened that had never occurred before. Medical appointments always come with reminder calls (as to PTA meetings etc) and when the MRI rolls around there's
always two, one for the imaging facility and one with the oncologist office. But somehow literally
within minutes, perhaps moments of when the MRI reminder had called the neuro oncologist office called. With those two happening so close together, some others came to mind but let's just say we went with hope as my four letter word. I always try to put my frustration energy into something productive so I went and raked leaves with conviction, keeping the annual tradition of making a huge pile for Kiana to come home and play with. It's questionable when she does that which one of us correctly understand the purpose of raking leaves.

Still the next day I headed to the MRI and handled the needles better than I ever have. And then I went home and looked at the MRI, all 282 images as if I have some clue as to which one means what in relation to what. Still, I compared it older ones, wondering if it looks better or worse (clearly it looks better, no wait, clearly it looks worse). A nurse friend said to me that this is exactly why you should not look at your own medical things since you have no clue how to read them. But perhaps exactly because you have no clue how to read them is why you sit there and look at it, believing reading it gives you some control. The humor coping mechanism certainly came into effect and I said if anyone ever wanted to look at me straight in the eye or see inside my mind here was their chance. After Kiana's bedtime is almost always the lamest time in my life cause what do you do then? I come from west Texas but somehow starting at the way dye creates contrast on an MRI is probably not what they meant by Friday night lights. It's a moment where me, the guy who is not allowed to take alcohol or caffeine knows if a cute girl would share a rum and coke, he would love her still.

I assure you it was not a coincidence that this weekend was packed more than average with accepting every possible holiday party in between picking up race packets. In the digging up of old MRI's to
have something to compare it to, I found the first bib of the Decker Challenge that I did right after getting out of the hospital. I use this story in my speeches many times that on a randomly assigned bib I got 911 which I responded with "Are you kidding me, I don't even have to put the emergency number on the back, you guys put it on the front..." Looking on the back of that bib and seeing who the emergency contact back then was less than comforting. Still, in changing the things that I couldn't accept, it was a tiny but significant comfort that this year I'd be doing the race with bib #8 and it was the first time since on Decker, the sixth time I would run it that it would be customized to the race not just a generic bib print.

But before that was Kiana's first two miler not in a stroller and our first night time run. She would gun through the first quarter mile in a pace I thought she would not sustain. And I was right sort of because she ran the entire thing faster, bursting into unbelievable sprints in between displays or when she had accept doing the entire course in about 19 minutes. She started the course with 4 adults and
would beat every single one of us in because she put on some jets on at the end that I didn't recognize with the time to catch up to her. When the race was over, she definitely showed she was my daughter. She cried for the same reason I suppose I'll cry if anything has progressed on Monday because she thought the run was going to be longer and she wanted to go out there and run some more. Still before we left for home, she had gotten ready to get back into smiling mode and pointing out which one of us is the naughty one and which one of us is the nice one.

Still, when we got up Sunday morning to do the Decker challenge, what is the hardest half marathon I've ever done (this is how you know I'm not a fair weather friend because it has gotten extreme weather on both ends of the scale and I've done it six years in a row), we lined up with nervousness and happiness that starts at each race. She was wearing her Santa hat and I was amused she took it off for the national anthem... I know there's different rules about ladies hats but didn't quite know where a pink Santa hat falls into this. Still, the race started and I gunned it. I had a very specific goal of making this race faster than the one I'd done with bib 911. The music pumped and blared up and down lonely hills. Kiana's growth was felt both ways but she was very conversational and out of all things pointed out from her newly acquired 2nd grade division skills why 13.1 was a half and 26.2 was a full and showed me how the division worked out loud.

In the end, I actually had enough to where I went faster on the second part of the course. I would hit my goals with with my time being my 3rd fastest half marathon ever, my 2nd fastest on that course, and my faster stroller half or what you would call making it as easy as 1:23. If we want to take the amusing math details it was actually 1:23.08 with bib #8.  I would take 10th overall and take second in my age group. Perhaps fittingly, it was exactly between my fastest marathon and the marathon that had bib #911, a middle ground I'll make over and over again in changing the things I cannot accept. I will take a slower time with a stroller with cancer than a faster one without her even without cancer.

We'd actually go to an even with Livestrong and some young adult cancer survivors. At some of those events I'm more chatty than others... with my MRI in suspense I was quieter than usual and continue to be amazed that some of them don't realize that there isn't a doorman in the world who could handle how impressive they are when they walk in the door. It was a jewelry making event which frankly I mostly just watched but Kiana made more pieces of jewelry than I've purchased in my entire life. We'd stay out and about till her bedtime so that she could be less stressed about the MRI results tomorrow because clearly as she sang through a half marathon and made jewelry that was all she could think about.

So I don't know what's coming tomorrow but I do know that I may have to accept that. But I also know that, once upon a time I put off brain surgery to run a marathon. But as of today, there are exactly ZERO races left that I did between diagnosis and surgery that I haven't done with Kiana. And I hope that catching and sharing more moments with people I love is something that while I have breath never changes.

Monday, December 1, 2014

Man and Machine

November in the end was a pretty good racing month. I did not win the beer mile three years running, took second in it in 2014. While it earned me one, I had  to pass up the free entry to the world championships for the same reason I've passed up some other invites I'm not going to let races be an interruption to time with Kiana (though you gotta admit, "man does beer mile with a stroller" might also make headlines... though probably not good ones, speaking of headlines for those who keep track of the media stuff, ESPN will be following me around this weekend for events for something that will air later) But in the end there were 5 different distances in 4 different distances with 3 podium places with 2 personal best is 1 month of November racing... but no partridge in a pear tree.

I've actually done 4 races in one month two other times but that goes down as the most separate races in one month. When I do things like this people have called me two things that I think are compliments, a machine and a beast. Last name being Leon and having taken on the Spartan race by the same name, the beast one is kind of fun but I never quite knew what to do with the machine one. Maybe it's because I've never had great associations with machines... I'm not a complete idiot and know many (most?) are designed and help man be more productive or at least measure how productive they are being. In the best case scenario, it won't be man vs machine terminator style but man and machine finding a way to help each other. I mean look at all the cute pictures I get of Kiana with my phone!

It's funny I have so many friends who have a mild interest to an obsessive compulsive disorder with simple machines that measure their bodily function for running or calorie burning or step taking or heart rate. I used to keep track of that stuff more before my medical appointments but now I feel like I get poked, prodded and measured enough by machine that I only use a running watch 3 or 4 times a week tops and use nothing else. And so I'm just four days away from stepping into a machine that tells me if my tumor has grown.

People still ask why I've gone to almost all MRI's alone for the last four years. While I have friends accompany to many appointments for many reasons but one of them is certainly because they might focus better on what the doctor is saying, it's not like someone is going to crawl into the MRI with me. There are people who are bothered by the noise and it is very loud but that's never bothered me... It's the fact that the machine is an incarnation of the nightmare. I couldn't remember I had a seizure, just heard that story inside of ambulance. It was an MRI that would tell me I likely had brain cancer and that's the test most frequently run test, the one after ambulance rides, before biopsies, before brain surgeries and then at randomly assigned intervals, I mean logically thought out times based on the lunar and solar cycle. And frankly, if I am going to invite anyone to sit around while I have a nightmare, I'd rather it be someone who is someone I'm relieved to fall asleep next to the night before the nightmare and excited to wake up to the day after. There was a girl who if I've gotten anything close to experiencing love with that was invited to a recent MRI but we didn't make it through the medical appointment day together... I'm more than willing to take most of the responsibility for that since it's when this stuff comes up that I'm most anxious and therefore distant because of the fear of damaging someone with my own damaged brain. Simply put when it was all said and done realizing there was no one at that level of attachment made that MRI easier than most. It makes me wonder if sometimes the only way to tell if life and love are going in the right direction is how much you keep going with each other...

The neuropsychological tests that I used to work on fairly faithfully at home I do a lot more rarely over the last couple of months finally accepting what good doctors said that the language/memory etc functions are as good as they're going to get, at least all I can help to do them by myself. So the MRI is the big test and one you can't study for. Friends ask how I feel and I try to smile without being condescending because we all want to believe that everything that could go wrong gets felt in advance but I've met too many cancer patients period and certainly brain ones where that's not true in any form shape or fashion and one of them was me. The friend I'd mentioned in here who was the first person I'd met who had the same diagnosis as me stage 2 diffuse astrocytoma, she was in for a "routine" MRI and now has learned it's gone from  stage 2 to stage 4. In her academic years, she was a nerdy student like me and joked about how they ruined grade 4 for her since she'd always associated it with the kind of grades she used to make 4.0 rather than grade 4 cancer (These medical people ruined 4 for her, they better find no way to ruin the number 8!). I've met other cancer patients who on their way out say to those of us still stable don't worry this won't be you. Heck, if it says anything about her character this friend almost didn't let me know because she didn't want to worry me extra about my MRI and she seemed more concerned for her husband and her dog than for herself (they still one of the most romantic stories I've ever heard, where he proposed shortly after finding out she had cancer in the snow and are heading to six years now). Other cancer patients understandably try to tell me that I shouldn't worry that it will be me but and while I know there's no way to do so but given the choice, I'd rather it be me than people like who her who seem capable of so much more good.
video
Still, not long after the latest treatment my friend was on a biking machine working out. Another brain cancer patient friend was on an elliptical machine shortly after surgery. And a third was doing 17 miles on a treadmill (17 miles!, I couldn't resist calling him a machine on a machine)... I'm not a working out indoors kind of guy but I still  did all 3 of those machines after surgery though not too intensely because for safety/seizure reasons I was not allowed to workout outside and if anything goes wrong there, you're collapsing in a relatively safe place. My brother tracked down a video here of me shortly after surgery (I in return tracked down a picture of us as little kids) barely moving when I'd just qualified for Boston less than two weeks before. It's almost funny how we try to fight what one machine tells us by getting on another one... I don't know if those machines do help or not, or the exercise, at least not with brain cancer survival probabilities but it still helps me besides cancer, away from it for a while.. my grounding by putting one foot in front of the other on the ground.

If nothing else, running has been a reminder that cancer even if kills me didn't dictate too much of my life on the way. It was a blessed coincidence that I was training for a marathon when this started. And putting off brain surgery gave me a coping mechanism almost as good as humor and almost better than sex drugs and rock'n'roll ;). Because I've tried to make the medical appointments revolve around my life, not the other way around. That first surgery, the last time at Duke, a race dictated the appointment not the other way around. Like Frankie said, I did it my way. The last MRI this summer, I actually made it the day after Kiana headed to an extended visit with her mother for two weeks that way if things went wrong I could fall apart on my own. I don't have those type of luxuries during the school year so the test is Friday, the results come Monday and so I'm doing a race next to Kiana on Saturday and one behind her on Sunday and setting up Christmas stuff in between dealing with a rainbow of colors and decorations while wondering about gray matter.


So yeah I'll sit with some ideas about what could go right or wrong this weekend on races and with machines. And even if it makes me keenly aware that some of the happiest moments can also become sad ones when it all goes wrong, you keep going. Someone who read one of the articles of what has been my focus, let's get to 40 and we'll worry from there sent a very kind message about how I wasn't optimistic enough. They wanted to tell me about the power of positive thinking and how that alone would cure my cancer and/or make medical appointments go better. I tried to remind them that I am and always will be an optimist, ahoper of far-flung hopes and a dreamer of improbable dreams. But my dream has never been to beat cancer, it's to wake up each morning and realize that no matter what I'm going to die and to try to get that day a little bit better than before the reality of my mortality became so poignant (But for those who talk about beating the battle against cancer if you want to read a poignant but strongly worded phrasing about why the term the battle against cancer bothers people, read here http://www.mcsweeneys.net/articles/an-open-letter-to-people-who-use-the-battle-metaphor-for-other-people-who-have-the-distinct-displeasure-of-cancer). So maybe I am an optimist and it's not such a far flung hope that a little girl will like the Christmas parties and our first night run ever as we run through a trail of lights (http://austintrailoflights.org/fun-run) or that she enjoy the only race I haven't done with her on a stroller that I did between diagnosis and surgery, the Decker Challenge (and if you look at the elevation profile and wonder why I'm doing it with a stroller, that makes 2 of us http://www.halfmarathons.net/usa_half_marathons_texas_decker_challenge_half_marathon_map.html). And my improbable dream for that race is to do it faster with a stroller than I did it after I got out of the hospital which was a 1:26.

I guess I'm relatively proud of how I am trying to handle this. I cleaned fairly thoroughly yesterday, raked leaves. I had a list of things to do that involved other people that somehow I wanted cleared before my MRI and that's almost entirely done. This isn't a way of not letting it get to you. Whether it be that cute girl who you want to make sure you get to call her for no reason at all, that friend you get to share food with, or that race which you trained hard for which you may or may do well in, or that MRI, I actually want to make sure things get to me. Because in my book, letting it get to you, you know what that’s called? Being alive and it's the best thing there is.  And that's the difference between man and machine. And while on Friday I'll be in a machine, I'll try to handle it like a man.