Saturday, March 30, 2013

The Boxer


We uphold hero mythologies… perhaps there are people who really are heroes like I’ve been called that a few times over the last few weeks… and all I have to say about that is that if exercising with your kid makes you a hero… we need to raise the bar, I believe that should be the standard. There’s been different articles and there’s still more interviews coming and a cursory reading of this blog shows you that I’m both open (some have called it sharing a journey, others have called it narcissistic) but I like the tone of this one…
  http://www.nj.com/ledger-dalessandro/index.ssf/2013/03/marathoner_with_brain_cancer_inspires_wins.html because it reminds me of one of the oddest and best things anyone has ever said to me… You’re somewhere between the perfect combination of Jerry Springer and Ellen. Somehow neither has called for an interview… There actually have been a couple of TV things and radio things and most of those aren’t shared on here because I am more self conscious about the interaction than the written word maybe because my own voice sounds odd to me and on video I see the muscle damage where half of my mouth doesn’t move as evenly on the surgery side.

I am not a guy who gets stuck on details but in most of the press stories there has been various details wrong like that I don’t do races without Kiana (I don’t on weekends I have her) or that I didn’t start running until the cancer diagnosis. Some I imagine is me/someone communicating poorly and some is that we all like a good story. Let me dispel the idea that I’ve never thought quitting, I have. It was good people who helped me, who  helped me with self doubt or who reminded me that no matter how I ran it was being a good dad that mattered (and I am ever grateful that the two combined so well recently). But all of this reminds me of the Simon and Garfunkle song

In the clearing stands a boxer 
And a fighter by his trade 
And he carries the reminders 
Of ev'ry glove that layed him down 
Or cut him till he cried out 
In his anger and his shame 
"I am leaving, I am leaving" 
But the fighter still remains 

I’ve got some boxer and fighter in me but still some thoughts of quitting came. A couple of years ago, I fell apart. I am a disciplined person but I collapsed and while my cancer/divorce/job  was happening one of my friends said look you need to get laid, you need to get high, you need to get drunk, you need to smoke a cigarette, you need to get back to running, you need to get back to church, you need counseling. I had about as many cures to being down as I’ve had offers for cures to cancer. And on both counts, I’ve probably  tried more than my mother would be proud of. But if the Gusher marathon is a high point, if somehow I’ve written a line of my obituary that I won a marathon pushing a stroller, there was also a night where I got wasted on tequila and smoked cigarettes for the first and only time in my life. I woke up the next morning and then I got back to trying to run… if death was going to come, I was going to make him work for it and someone sent me a jersey that captures that perfectly. 
Because it’s where I let some things out of the box and some of the fighter that remains comes out. But that’s not the only way I’m a boxer. I keep a box that I’ve been making for Kiana since this all started. It sitswith pictures of her mother and I from the high school days, letters from the entire relationship, pictures of her with us. If the time comes, I hope someone prints out this blog and puts it in there. But lately there’s been these articles getting in there and I’ve asked those who write it to sign them so I can put them in there. I hope that I’m leaving some good memories for her in every way I have imagined how to. And even with the low statistics of survival, my sweetest dream is that when there’s the right point of maturity, I’ll be the one handing it to her.

I did a 5k today… came in second without a stroller… the thing about winning a marathon with a stroller is that from point onwards whatever time you get people ask well did you do it with a stroller ;). I am going to keep running and keep training hard and keep pushing a stroller but the point isn’t the win. It’s the effort. If death is going to win, it’s going to have to run pretty fucking hard after me. The only way I’m ever slowing down is to hold hands with a princess. We did the Austin marathon’s trash run. We just signed up for her first road mile race the weekend after I get back from Duke. And seeing her smile in those are million dollar memories.  

I am going to try to stay ahead of my problems and besides my princess. Someone sent me a great bracelet that says Carry On and it’s super nice so I’ll probably save it for special occasions… There have been lots of people still offering cures to cancer, some with less than legal substances. I’m not going to risk custody or take trips all over the world to try to buy more time because who knows if it’ll work but I know I enjoy the moments now. Still, I trust my doctors and I think between that and me running is why the fighter still remains. But I’m going to keep boxing down cancer and boxing up good memories. 



Saturday, March 23, 2013

The George Clooney Approach


For those of you who think there is a book in the making here, this like most blog entries is a rambling unwinding train of thought.

Well in this media blitz continues and I still can’t believe a Pulitzer prize winner wrote an article about me. If you want to see good writing go to http://online.wsj.com/article/SB10001424127887323419104578374870179274496.html) where a guy I gave permission to talk to my doctor wrote brilliantly about how my doctor’s approach is awesome. I’ve gotten lots of questions about the cancer, about the state of it, about this and that and lots of cure offers (the cure to cancer’s even the current cover of Time magazine)… but one that has come incredibly often is where is Kiana’s mother? That story can be more thoroughly seen here at www.livestrong.org/iram as to how I screwed some of that stuff up and I’ve attended actual therapy, not just running, and I think the relationships I have are better for it. And if you read back a few entries you realize that right now she’s currently asking for custody that based on my medical condition that I only be allowed supervised visits (if I won a marathon pushing a stroller doesn't make the arguement for the court, I don't know what will). But I have made references to my George Clooney lifestyle in this blog because bets out there that I’ll never get married or have kids again because of the probabilities covered in that article… Some people have said and it’s not entirely inaccurate that some of my not getting a girlfriend is because I was with one girl for so long and that I'm just having some fun and at some level that’s true. It's also true that healing takes time. But there is a pattern to the few girls I’ve hung out with.
There have been a few girls in the last two years who I have hung out briefly with and none of them would tell you that either of us ever considered the other their significant other. But what I can tell you is that the we’re better off as friends stage came across incredibly predictable… it was an odd MRI, 48 hours later, we’re better off as friends. Waking up in an ambulance for the second time, 48 hours later we’re better off as friends. Returning trip to Duke and while at Duke a call that ended with we’re better off as friends. First MRI in a few months and then 48 hours later, we’re better off as friends. The emotional damage from getting left in the middle of cancer has left me where I am afraid to invest too heavily for both fear or damaging or being damaged. For lack of a better comparison point, back when I was in college, the only time I ever invested money in a single stock on my own it lost 40% of it’s value over night. So since then back when I had money to invest in a retirement account, I put it in more diversified interests. I have lots of good friends and family and I’m heavily invested into Kiana’s future and present but the drive to sign up to get a significant other is not a dive I’ve been ready to make. Part of that is my own damage and part of is an honest fear of asking someone to sign up because I'm not sure that's fair to ask or if I can handle if they leave when things get rough again.

Part of is those girls who there have been sort of relationships with all seem so convinced that I get to be part of the minority that beats this. I dare to dream so but somehow if there’s ever going to signs up and who I can get the courage to sign up with I need them to both live with the balance of reality and with hope, not denying either and then the totality of the other messes I come with. I’m not so sure any human exists and while I’ve been called humble a few times the last few week for how I’ve handled the press… I don’t know that I’m that humble. The last two years have shaken a lot of confidence in my self; insecurity and humility may be getting confused.  And I’m not sure I have the courage to participate completely or to ask.
If you’re wondering where these thoughts are coming from, it’s because I went to the life celebration of Brian today. He’s the only one in the (www.livestrong.org/wecanhelp) campaign who has passed.  I’ve written about him before in the survivor’s guilt entry but it was tough to be there and hear his sister sing, his stepdad talk and some others friends and family share about him clearly moved but also clearly heartbroken. But the hardest part was watching his wife cry and cry and cry. She never addressed the group but it took one glance at her to realize as she spread dirt over the tree they had planted in his honor…  that she loved him with every ounce of her being. I’d only ever met her once at a dinner and all my communication had ever been with him. Today I just hugged her and the guy whose written so damn much about all this and who usually doesn’t know how to shut up… had nothing to say. And again, one look at her from anyone showed that she had deeply loved a man who was now gone. And people point out that’s what relationships are, signing up for the risks and the rewards, but how do you ask someone if you're going to be somebody's heartbreak be mine?

Part of it is that unlike many cancer patients, most days I seem fine. While I seem fine and my latest MRI shows everything stable, what’s the polite way of saying I met someone who looked as fine as I did last June and odds are they aren’t going to make it to the end of April… The one thing people misread about these articles isn’t that I’ve been given 8 years, it’s that’s the hope, it may be much more, and perhaps much less.. The mean survival rate is 4 years, I’m at 2.5 and the 5 year is 34%. I keep living life like I play poker, you bet the odds. I am just grateful to be stable. How do you ask someone to sing up when there’s a strange ambivalent clock over your head? I think part of the reason I do these events is because during those, it’s a clear mile marker, a clear distance, a clear clock.

It is unusual that I get a babysitter period but I did so for this event because it felt incredibly inappropriate that her first “funeral” would be of a cancer patient who was roughly my age, especially since it was someone she had never met. I wasn’t ready to ask the questions that would likely come. Kiana was there before I had cancer and if there comes a day where I can’t take care of her, I can’t and that’ll be that. Right now, I’m giving her all I got and for all those who have called me a hero, I am no hero, I am just trying to be a good dad. I like the compliments about the marathon win but in that same entry , survivor’s guilt, I said I’d rather come in last with her than first without her but I am grateful that the Grace of the universe right now is letting those be combined. So today, I skipped my own running group to take Kiana to her first’s school fun run where she did 11 laps in half an hour…  And I threw a Frisbee with her… and I kissed her goodnight. And I cried on my own for Brian’s family who I barely know and cried because I’m afraid of hurting mine…

There’s a song I’ve listened to over and over again. Waiting for an angel… cause I don’t want to go alone (http://www.youtube.com/watch?v=FVHZtxMtt0M). And I return to Duke in 4 weeks and revolved it around their annual 5k which appropriately enough is called Angels among us. And I have many angels in family and friends so I am not sure if I should learn to accept that I have an army of angels and continue the George Clooney Chronicles. And while I’ll never abandon that idea… I know I fight harder when there’s an angel in front of me that I’m trying to raise and I’ve told my doctors if I didn’t have a kid, I’d tell them all to go to hell and climb in and out of the grand canyon and I’d die when I’d die. But today I watched a guy who clearly fought harder because of an angel who was also besides him… I had survivor’s guilt and had some level of jealousy because having met him, I know he fought because of an army of an angels as well but perhaps fought hardest because of an angel next to him. 

Today someone ran 10 hours in my honor and I'm grateful for that. Today Kiana ran 11 laps in half an hour and I'm proud of her. Today I cried because I saw cancer break someone's heart and I'm proud of him for being willing to invest the way it was clear he did. The stroller bob sent us came in and I'm grateful for that... An ipod came in with perhaps the best inscription any gift has ever been sent with and Kiana's college fund is flabbergastedly at 10,000... 10,000 more than I would have ever guessed.




I said at that marathon, don't be as dumb as me and wait until you're told you're dying before you appreciate what you have... Hug, love, spend time with whoever you love today. And I'll keep doing it with as much conviction as I can... and someday I'll figure out whether this George Clooney shows how much my brain has healed or how damaged it is...



Wednesday, March 20, 2013

The Core of My Message


I’ve done a few interviews… made international papers… Australian TV interviews… just did one for the Headline News. The media just learned I speak Spanish and now CNN Spanish and Univision have asked for an interview. Those of you who have joined late in the game or those of you who have just started reading this blog can tell that I have no problem sharing my story. If you want to read the story, it’s a lot longer and more complex than just a marathon win which is why this blog exists and I thoroughly appreciate those of you who no matter when you joined have started from the beginning. If you wish to read, hear, some of the latest interviews, they are linked below though if you’ve read this blog, I’m not sure there’s anything new just more exposure.

With it various people with golden hearts and great intentions have encouraged me to focus on one message and make sure I share that. People who worry about finances, I’m one of them, have said make sure you encourage the scholarship fund (thegushermarathon.com) and in simple frankness while it hasn’t been mentioned in every interview, that is the one request I make in order to give someone a few minutes of my time and if you donate I love you ;). People have suggested that I try to milk this for my 15 minutes of fame (I dare to dream I’m 14.5 minutes into it as I write this). People have suggested that I continue to do things like raise money for the organizations that have helped me like I have for Livestrong, Duke, the Brainpower 5k and a simple glance at all those will show that I have done the best I know how for that. And in these interviews they’ve gotten nods, with me wearing a Livestrong shirt on one, a Duke shirt at another, my running group shirts on others, one with team Luke’s, one with the ARC’s Ship of Fools, one with the Austin Marathon, and another upcoming with Conley sports because each of these were incredibly intricate and important into why I am able to keep going. Those nods are because each of those organizations, doctors, individuals are awesome and I owe them a huge chunk of my life. And yes I agree that their needs to be an advocacy for exercise in general. There may need to be more specific ones for how cancer can ruin many things financially and practically, to encourage people to take control of their diagnosis and I am happy to be a spokesperson for that and have made videos for organizations for that (see those by looking for iram and livestrong and I like those better than the youtube video that should get me banned from karaoke bars; in seriousness while the youtube makes me wish I was thinner and sang better I do love that it shows Kiana taking it all in and literally enjoying the rides) but those aren't my primary cause. I've been invited for some races and have been glad to take the invite cause I love running and Kiana does to. One race asked that I do a virtual race for father’s day and they would donate part of the profits to the charity of my choice. I said yes and chose wonders and worries, the one that because I couldn’t drive came and did counseling with Kiana at her daycare, they gave me the tools and guidance to speak with a 5/6 year old more appropriately about these things. And they aren’t one I’ve said appropriate thank you’s to. I hope this counts.

For a guy who says running is his therapy, I do actually meet with a minister and attend a church regularly. I’ve been reprimanded by people for not shouting praises to God higher on my facebook statuses and in this blog about how he’s saving me. But if you read it, you can read that not once have I asked people to pray that God let me beat this. And I’m not ready to give credit that God is saving me because in simple logic, if I am ready to declare that God is choosing to keep me alive, you have to deduce that those who haven’t survived were somehow God’s choice to let them die and I'm not comfortable with that. So I don’t know… I have no divine revelation… but I’ve focused on that text from the only book in the Bible that doesn't mention God “Who knows if you were brought here for such a time as this?” I want to help. The way things lined up that I once put off brain surgery to run a marathon and the only one that’s gone well since then is also the only one that’s ever let me run with Kiana seems incredibly blessed. So maybe it’s for such a time as this but the first part of that book is also who knows? And I don’t but Esther chose to act without some gigantic divine revelation and I’m trying as well because I believe that you trust in God but you should also lock your car. And I’ve referenced many things in here in regards to that but I ran the marathon out of gratefulness that the appreciation didn't come too late not seeking new blessings  One of the songs I’m listening to right now is Larnelle Harris’s, “Beyond What I Can See:”

If not another blessing came,
I’d still give Him praise;
The balance of my days.

Others have tried to get me to advocate for running any distance or a marathon in specific  but as I jokes in one of the interviews, I have my brain screwed up is why I do so many marathons :) and, I’m not sure why other people do it. But yes, I do believe exercise in whatever form should be done and am very proud of my mom for doing her first half marathon last year and the the 5k on Sunday with me and Kiana having done a kids dash and a track workout since the marathon that she won. And so that is part of my message, be good to your body because it’s good for your soul, body and mind. 

Others have said this is your way to get a girlfriend or at least a few really hot dates. And while I am single and haven’t had a girlfriend since high school, I’m not sure that there’s going to be girls lining up to say, hey I know your finances are shot, have a kid, and cancer but at least you run well, what are you doing later? Planes don’t let you check in that much baggage, I am not sure anyone is ready to get into a relationship with that. Because if you are my number is 867-5309 ;)

And yes 2 weeks ago, I couldn't get into any marathon pushing a stroller and right now there's a scholarship fund for her since they were nice enough to let me in and I was blessed/fortunate/lucky enough to win it and for that I have 2 words, thank you. I think that thank you nowhere near suffices that they'd never heard of me before and now are helping me sleep better at night because one part of my daughter's future is a lot easier to contemplate. And themotherofallruns.com has gifted us an entry and they aren't announcing it anywhere but I am because this kind of memory will be a different kind of fun than any other run we've ever done because it's an obstacle run that I'll be doing with her and another friend who will help us overcome race obstacles.

But, yes I’m broke and unemployed and in debt. Yes I believe in my church, in Livestrong, in Duke, in Seton, in Wonders and Worries, in exercising. And if you want to donate/participate to any of these things, I and the appropriate cause will be grateful and I believe you will be better. But the core, the core of my message is one thing and one thing alone. Make memories with the ones you love and that matters more in my life than anything else and do it till you get to the finish line. There may not be a medal, or a trophy or international headline but if they know that they are the biggest news in your life everyday. If my legacy is that I loved my daughter and others better and encouraged others to do so, I will live and die in peace. It may not get as much attention as the Gusher Marathon did but if you do that, just like me, I promise you won’t experience a more meaningful win. 




http://www.huffingtonpost.com/2013/03/14/iram-leon-marathon_n_2869802.html
http://abcnews.go.com/blogs/lifestyle/2013/03/cancer-patient-pushes-daughter-in-stroller-to-win-marathon/
http://www.kxan.com/search/SERP?q=iram+leon&t=web&submit=Search&s=kxan.com&o=relevance&google_web=google
http://www.youtube.com/watch?v=YghQaQtFd80
video






Monday, March 18, 2013

Press On



Assume this will be the only blog entry that addresses the "press" where apparently I can be easily googled under. I think it's against the rules to google yourself but here are some thoughts. I can assume it was a slow news week and then it will return to what it’s always been, just a way to remember, to cope, to hope, to vent, to share because it is in expressing and holding hands in our joint humanity that any of the senseless mess of the last 2.5 years makes any sense it all.

I would have never imagined the last week… this blog doubled up its subscribers… lots of people added me on facebook… people have asked to guest blog in it… I’ve been given a couple of dozens cure to cancers from all over the world from this juice to marijuana to those pills to mediation this alternative treatment here in various parts of the world…various interview requests, various incredibly kind gestures like a double bike, and a couple of girls who asked me out on dates (both got no’s since I’d never met them)… I have said in here many times, I have a lot of bad qualities but pretentiousness isn’t one of them but let me quote a more eloquent author we call Shakespeare, to thine own self be true and that way to not man canst thou be false. 

Above all things, I want to express gratitude because that’s the one emotion that’s never blinked. Who would have guessed that running a marathon would have resulted in all this? In the very few actual interviews (they’ve all only been a few minutes of questions back and forth), they have asked about the Gusher marathon’s college fund (see it at thegushermarathon.com) and asking if there’s anyway they can help. Of course, any parent would like a scholarship but more importantly share something you love with someone you love because trying to do things alone is how you end up alone and that’s worse than cancer. A few months ago, I was in a hospital room of someone dying from cancer and those are moments that I rarely blog about because it seems entirely inappropriate but there as he took his last breaths, he was surrounded by his kids, his friends and I’ve not seen many people die but he was incredibly at peace as he died poor and broke. I have another friend who right now has a job where he’s making lots of money from a job that required lots of travel and shared that his kids not too far from Kiana’s age said, when are you going to get a job where you don’t have to leave as much? Those are two extreme moments and life is somewhere more in the middle for most of us… but I’m going to catch the moments I can with my daughter as best as I know how. Please don’t misunderstand…we had spring break last week and we had play dates almost everyday and during those times she just hung out with someone her age and I sat in the background for a lot of overjoyed at watching her smile… but the experience of is like scuba diving which I used to do or walking through a forest… to see the natural in its own element instead of just hearing about it is something that simply can’t be beat. I didn’t run with her just to keep running, if you watch a youtube video which now has had way too many people see my fat shirtless self singing badly, she’s perked up the entire time because it’s an activity we both enjoy. Some parenting requires discipline and this little girl doesn’t like when I use the word consequences and usually gets in line pretty quickly when it comes out but that’s the tough part of parenting, the reward is the fun parts.

I’ve talked to a couple of local radio and TV spots here and in Beaumont because that’s all I thought it would ever be and I’ve learned quickly that people who have made videos of me for their news and websites exactly what freedom of the press means (and I have no objection). But I also passed up an media because they wanted me to run a race I was doing with Kiana with a stroller for 2 reasons. One, and let me say thank you, Bob was kind enough to give me a free stroller since the one I use for races is borrowed and it hadn’t arrived and two I’ve only done evening 5k’s with Kiana with a stroller because she’s not a morning girl and… she did the kid’s dash after, part of the joy, perhaps bigger than my trophy is cheering her races. It was a race raising money for brain cancer, the head for the cure and there were two people who hugged me and they were some odd moments because they said my brother died of brain cancer and I signed up for this to meet you and tell you to keep going and my daughter died of your cancer and she’s telling me from heaven you’re going to heaven. Seconds after both of those I wiped a tear but not some fear from my eyes. I came in second in that 5k teaching me perhaps not to race so quickly after a marathon (the marathon was a last second addition that race had been on the calendar for months).

I've given immediate no's to anything that would get in the way of time with Kiana. This marathon is getting people’s attention for a variety of reasons but one of them is that I did the right thing of sharing life with my daughter more so it would be a mistake to do it less. I had an invitation to a fancy dinner Saturday night and went through with the plans that I originally had which was to have dinner with the friends who had named themselves the J Crew from my running group because this was a brain cancer race. I assume this will all fade in a couple of days and in the end, it will be the people who are still there that matter and they are awesome.

As far as all the alternative treatments or other doctors I’ve been encouraged to see, I have no way to discern which ones would work or which ones wouldn’t though in simple frankness the simpler ones I've tried. I haven’t worked in almost a year so trying them all can’t be cheap and just as significantly, if I tried them all that would have to make me sick somehow. Perhaps as simply, I trust my doctors. These are guys who let me put off brain surgery to run a marathon, who when the MRI is stable rather than just deliver it blankly say it with, I’m not sure your brain is stable from the way you run but everything else is. They smile when they see me because they know I’m not trying to avoid dying just trying to focus on focused living.

So anyway, I lived in England one summer where they say today’s newspaper is tomorrow’s fish wrap. The press coverage will end soon I assume but my two big truths me running, me loving my daughter until I get to the finish line, you better believe we’re pressing on. 

Thursday, March 14, 2013

The Law of Unintended Consequences


I ran the marathon that I won with a stroller because I wanted to run a marathon with a stroller. I put off brain surgery to run a marathon because I thought there might never be another. That would lead to a short tv interview. It was the second year I’d ran it but the very first time ever it was the Livestrong marathon… where a cancer diagnosis would come in the middle of it and I’d put surgery off just because running with job shifts and relationship shifts, I kept running because it was the one place that felt normal. And on that marathon in 2011 I would qualify for Boston and then come back and win the cancer survivor’s division in 2012 and 2013.

I ran the first half pushing a stroller to encourage my mom to do her first half ever at age 60 and it got local news cover. (http://www.oaoa.com/gallery/sports/collection_11ffb65c-0fe8-11e2-a849-001a4bcf6878.html). She came in dead last out of the half marathons but I was a lot more proud of her than of any of my wins. At Gusher, that speaker I referenced being lost in here was noticed by the very last finisher, who took twice as long as I did but along the way was kind enough to notice it and have a cyclist pick it up. I just kind of said oh well when it fell because I’m no good at getting started again if I break that late in a marathon. More importantly, this was his 50th marathon and he did the entire thing carrying an American flag (http://www.12newsnow.com/story/21578566/veteran-carries-american-flag-as-he-runs-50th-marathon). Somewhere in both of those I think the Biblical precept of the last shall be first is incredibly true.

 I raised money for the first ever brain cancer research race in Austin, the Brain Power 5k and was fortunate to win it (first race I had won since college) but more importantly was the lead fundraiser. That would win me a trip to Sonoma which felt weird on other people’s donation and in my sense of obligation this year got it donated as raffles for the 5k under which I revolved my next follow up at Duke (http://dccc.convio.net/site/TR/Angels/AngelsAmongUs?px=1118121&pg=personal&fr_id=1150).

Long before all this I raised money for charities because I strongly believe that if we don’t hang together, we’ll hang separately. And a simple look through my facebook profile would tell you I used to have more money if for no other reason than that there were trips around the world and since then I have no clue where my passport it. And my diffuse astrocytoma, grade II is a cancer that has no known genetic, lifestyle, environmental or dietary components.  And long before any of this I was comfortable being in the center of attention but it has all felt very odd that it’s due to a disease. If you read the last blog entry which will likely always be the most read one, read the race director’s comment. Every other race that has let me in opened it up to anyone else doing it with a stroller but I was the only one “dumb enough” to do a half marathon and a 30k with a stroller. She wanted to know why I wanted to be let in and I didn’t want to talk about the cancer, I wanted to have credibility with just the times from the races but she thought my credibility should derive from the heart of the matter, why I wanted to do it with a stroller which was what that enterprise article was all about (http://www.beaumontenterprise.com/sports/article/Brain-cancer-patient-wins-Gusher-Marathon-4342280.php). It’s greatly written and was picked up by runners world and outside online magazine. The author is 22 years old and it’s his first job out of college… If he can write that well with that little life experience, he’s got a career ahead of him. We traded emails where he humbly tried to deflect the attention the article was getting and we finally compromised and agreed that like in photography both the subject and the angle at which you catch it at matter.

But boy have I learned that life is full of unintended consequences… It was picked up by those magazines and the wall street journal put in a picture on the back… Honestly there have been throughout this journey people who have had me sit down with their relatives or friends and try to get them to keep going when they are considering giving up. Most of that has never made this blog because even as public as I am, I’ll take a line from George Clooney that some of your personal life should be kept personal because otherwise it’s not personal. But let me say this, there have been more of those type of emails this week and phone call than in the last year combined. As in the past, I have talked and listened as best I know how, let them know they can call anytime having recognized from sitting with survivors that the human aspect is gigantic but also referred them to Livestrong where you know they are professionals. One of those interviews let to a donation to Livestrong under my name.

People have emailed me asking, letting me know they just signed up for their first 10k/half  marathon/marathon because of this. Others have asked for training schedules and I tell them which ones I have used,  Hal Higdon and Run Less, Run Faster but tell them that the main reason I think I’ve gotten better is because I used to run by myself and now I train with the Ship of Fools and Luke’s Locker. The simple truth is I’ve always been decent at run but preferred team sports because I am a social guy. As a single dad, to continue in those would have had Kiana on the sideline and less involved at this age and I hope to be the one on her sideline someday but I got faster because those groups and pushing with a stroller made running from a solo sport to a team sport for me. People learned that my stroller was borrowed from one of those teammates and are now trying to get me my own. But the people who have asked about running I told them to find a group and a motivational thing to keep putting one foot in front of the other. I was able to track down Cory who had traded me the wheel and he would not let me reimburse the tube but I told him I owe him a beer and he said we’ll do that at some race down the line. The guy who fixed the tire thinks he didn’t help in anyway which is absurd because honestly I’d told the race director that I was going to have to bow out and he, Jim Borque, was the one who started trying to find a way to fix it and call people. When the race was finished, I bowed thank you to him because the don’t quit attitude went both ways that day.

People have asked about my doctors and I brag about all of them. These are doctors from Duke, Dr. Friedman who let me put off surgery to run a marathon, Dr. Valiant and Desjardins who let me keep running and have tried ways to help with my deficits, Dr. Perurena who knew enough to where even if focal seizures might have been dismissed understands that it’s better to put extra restrictions on me than to ever let Kiana be at risk in a car with seizures fully controlled. My neuro oncologist who pointed me to lumosity to work various aspects of improving the brain. There are times where I was dumb enough to think some of the deficits where their fault instead of cancer’s fault due to the drugs or the surgery. That’s of course ridiculous and fear based because I think from meeting other survivors is that my deficits would be far more obvious if I didn’t have that ridiculously good of a team. After I won the marathon, I hit my Duke fundraising goal within 48 hours.






And then the crazy race director for the Gusher said we should start a college fund for Kiana which frankly I objected to. This was a woman who got my sense of humor and when she finally let me in decided that it was a no brainer. She simply did it and joked that she was crazy and put an incredible goal for it. http://www.donationto.com/Sports-Society-Fund-for-Iram-Leon is where it’s at. She said you’ve helped people and you’re obviously too proud to let people help you but don’t try to stop us from helping your daughter. She pointed out I didn’t ask for a dime but I’ve got no argument for that. I don’t know where that will go but it’s currently at 100 which in simple frankness is $100 more than  Kiana had in any college fund yesterday. So if you want to make a donation to that… you get a virtual hug or a real one whichever you prefer.

I didn’t expect to get that kind of time on the marathon and if you look at past results some of it was blind luck. It was the slowest winning time they’d ever had. This has me all feeling grateful, confused, humbled and overwhelmed. I assume and trust this will all be over in a day or two. But even so, it’s spring break and while Kiana’s had some playdates to make life a little more social during spring break (and hearing about UT students crazy antics), the one thing that has not been negotiable has been that we don’t do something fun together everyday. And so we’ve thrown a Frisbee around, we’ve ran together at my track workout, we’ve drawn on the sidewalk… because at the end of the day, there’s something incredibly comforting about the fact that cancer and its side effects have ruined many things but they haven’t taken away my ability to run and love. And at the end of the day… perhaps the reason the Universe was kind enough to let me win the only marathon that ever let me in pushing  Kiana was to remind me why it’s letting me keep breathing, even if it’s hard, a little bit longer. 

Sunday, March 10, 2013

An Open Highway


When you put off brain cancer surgery to run the 2011 Livestrong marathon, you never get to live it down… but I’ve ran 3 marathons since then and wondered many times why none of them have gone anywhere near as well… 9 minutes slower in 2012 with an ambulance wake up call less than 2 weeks later, nearly an hour slower with the 2012 Boston weather being the second hottest one in 112 year history, 2 minutes slower in 2013 vomiting 4 times on the course and 4 times after the finish…  I’ve gotten faster times in every distance why couldn't I hold pace over the marathon distance? My brain maybe screwed up but it finally found the reason.
After Austin, where I was trying to get some aggressive goals, I accepted that if you have 2 ipods give out and throw up all over the course, it’s probably going to be tough to achieve it and moved into 5k mode since my next trip to Duke revolves around their annual 5k. But there were 2 of my running group who were looking for another marathon. They had also struggled accepting their Austin marathon performance and were also people who have given me rides quite often. They encouraged me to come and I said I’m in 5k mode now and I’m not going unless they let me do it with a stroller… I emailed the director who initially let me know they just couldn’t do that despite my stroller division win, my 30k and half marathon age group wins. She even asked give me a reason why I should let you do it and not let anyone else not use a stroller… I said I didn’t know what to say to that and that I could handle rejection, since they were the 4th marathon I’d asked (Boston included). She said she’d sleep on it and was kind enough to decide she’d let me do it the next morning.

The rest of the story is what I would call improvised redemption. I am a guy who doesn’t know how to run without music but since I signed up with very little time I didn’t work on a playlist just though I’d add a few kids songs to the one I’d never heard in Austin. Then on the drive there as I started listening to it, I realized a song that has a few less than kid friendly songs (Eminem’s Till I Collapse for Example) probably should not be playing those since they were going to be on speaker while a 6 year old was listening in. So I removed those and forgot they took up a chunk of the extra time I'd allotted (I had a 3:30 playlist) and would not realize until the race that I'd cut it to 3:11.

Then I got to the race beginning and the front tire of the stroller I borrow for races was flat. We tried to fix it but a cracked stem isn’t fixable. I let the race director I was going to have to bow out. He said one of the volunteers would watch Kiana and I could still run it. I stated I appreciated it but I’d rather be the one watching her cheering on my friends than having her babysat. One of the guys who would be a volunteer bike rider doubled up a tube in there and pumped it… it was wibbly wobbly… and we tried it with Kiana and it was going to have to just take a lot of effort to keep it straight but it would have to do. I found someone else with the exact same stroller and asked if he would let us change the front wheels for the race and trade back after (he was not running with a stroller). He politely said no because he was just doing the 5k and then had a 90 minute drive to get home. Then it was my time to get on stage to address the crowd, as they had asked me. I had prepared a few thoughts but I had intended to arrive at the race looking for body glide, got distracted by the stroller issues and I managed to remember to start by first apologizing for the length of my short. Then I said I ran track elementary through high school, cross country in college, once ran a 1000 consecutive days and while I had never run a marathon till 3 years ago and am now at 7, it wasn’t until I got cancer that I started sharing it with Kiana. I shared the joke from my doctors that they can’t say my mind is stable due to my running habits but at least the MRI was. No one’s brain had to be as screwed up as mine about running it with a stroller but there at the gusher marathon, I encouraged them to make sure that any friend, family, significant other should know at the end of the race that the Gusher marathon helped you gush about them.

Then I got off the stage and put Kiana in the stroller thoroughly intimidated by this front wheel and that same stranger would come up and say, you know what, let’s trade wheels. I changed them as quickly as I could, asked him to please get my contact info and I could send him whatever after. I got them done with 3 minutes to race time and then got to the front to start the race. And we were off.

I was not quite mentally prepared for race conditions or at the race start. There were supposed to be 11 mile an hour winds and at most and they were more like 20 mile an hour winds with the wind getting stronger throughout the race with gusts up to 24 miles an hour. I am not great at tying my shoes and usually double or triple knot them before races. With the wheel distraction I didn't do that and literally had to stop to tie the first show about mile 3 and the second one about mile 8 (the first one got double knotted the second one triple knotted). These were also new shoes since I’d retired the other ones after Austin.  This race had a lot of turns which without a stroller I would have not noticed throughout a campus and downtown. With a stroller, you notice them because you can’t make that many hairpin turns (my garmin bonus for this race would be greater than any other marathon). The wind was so bad that since it was a two loop course the half marathoners who were running about my pace tucked in behind me for several miles and when they passed me on mile 12 thanked me for blocking the wind for them…

After crossing the halfway mark at just under 1:31, I couldn’t see anyone ahead of me and asked a cyclist how far back I was. She said there’s no one ahead which floored me. Was there a possibility that I could win not a division, not an age group but a marathon with my inspiration directly in front of me? Right about that time, the speaker started playing “It’s the time of your life so live it well” from A Bugs life and Kiana who had slept a good chunk of the first half… woke up and started singing it.

Then it was just trying to keep the engine going in the wind which kept getting stronger but if nothing else at least kept you from feeling as hot. When I’d passed all the water stops on the first go around, I’d asked them to splash me the second time around which people had fun with. I’d forgotten to point out that I’d be good if one of them gave me water every once in a while. Fortunately, the lead cyclist that was accompanying noticed me and brought me a few cups for the second half. The marathon had gels, bananas and all kinds of things along the course. I don’t use those but he managed to bike close enough to get them to Kiana which made her experience better and more fun.

At mile 19, I realized each step now was one step longer than I had ever done with Kiana. Simply put, it was also something I would have never imagined doing, running a  marathon with a stroller. And so we kept running. On the second half, Bon Jovi’s, it’s my life came on. At that point 3 people were biking next to me and Kiana asked why are they hanging out with us and why is everyone waving at us. I kept having to barrel down because of the wind and so I just told her to be polite and wave and say hi to anyone saying hi to her. One of the people on the bike, I would later realize was taking video of it. And if you listen to that, (http://www.youtube.com/watch?v=iKLXEAPjwAw&feature=youtu.be) you’ll realize why I don’t do karaoke. But either way, on that windy closed six lane highway, I sang along answering the question I get asked a lot, why I’d rather run with a stroller rather than without one “This ain’t a song for the broken hearted, I ain’t going to just be a face in the crowd, you’re going to hear my voice when I shout it out loud” and “My heart is like an open highway, like Frankie said, I did it my way” “it’s now or never, ain’t going to live forever I just wanna live live while I’m alive.”

I’d gotten splashed enough to where my speaker that I run with a stroller stopped working and as I tried to fix it it went into a gutter. The cyclists said they could entertain Kiana and so I put on earphones for the last bit. Those last few miles were on that uplifted highway with the wind and temperature up. I’ve never gotten anywhere near a negative split in a marathon but this 1:31, 3:07 was the closest I’d ever come. When I push a stroller I sometimes push it ahead of me when I need to blow my nose or take some shot blocks in but when I did that, it literally would come back to me because it was literally uphill and against the wind.
In the end none of us who went out there from Austin, had come in the time goals we’d hoped for. But a friend had pointed out to us that you have to focus on the process as much as the outcome and I think that's an important mantra. I handed out Livestrong bracelets to remind people of that. Still, three of the four of us made the awards stage for prizes.





But here sore, reflecting and grateful, I still can’t believe that I won a marathon. Well, I came in second behind Kiana. at the awards ceremony, I immediately placed it on her neck and like every other race she’s been part of it that medal hangs in her room. It got some local press coverage if you want to read the story better written and more succinctly (http://www.beaumontenterprise.com/news/article/Brain-cancer-patient-wins-Gusher-Marathon-4342280.php). Either way, this marathon over 2 years later is literally 1 second apart from the one I’d put off brain surgery for. Turns out that maybe brain cancer, which has come with some nightmare scenarios, also has had some that are better than I could have ever dreamed. But at the Gusher marathon, against the wind and up hill , with my princess and inspiration a step ahead of me, I ran on a highway even if I’m not allowed to drive on it. I may never get to live down having put off that surgery for that marathon, I dare to dream that I lived up to it. 

Update: If you've read this far read the race director's comment below and then showing how generous she is she also set up a scholarship fund for Kiana: http://www.donationto.com/Sports-Society-Fund-for-Iram-Leon 

Tuesday, March 5, 2013

A few of my favorite things


I like singing and dancing. Let’s just say I’ve done a lot of that today. I suppose I should rewind a few hours or days. I have made a habit of scheduling my medical appointments after athletic events because I figured if I am going to be getting a measurement of the system, I might as well do it after I push it. But if I go back a couple of years, in that incident where I put off brain surgery to run a marathon (I’ve done a few interviews but this one will likely always be my favorite, http://www.youtube.com/watch?v=X5cKt9vBeFA particularly that moment where Kiana and I are sticking our tongue out at each other). There was one MRI that my doctors and I agreed served no function, we were doing them monthly between the diagnosis and the surgery but we didn’t do the one in February 2011 because we’d done one in January and the surgery was going to be early in March and shy of waking up in an ambulance the date was going to be based on the Livestrong marathon. I’ll never get to live that one down and I am not sure I am ever going to get a pass on not running after that but for the last two weeks before the marathon there were no appointments, no distractions, just the focus of the race. The 3 marathons since then have all been followed by medical appointments… and the Duke 5k will be as well but this past Sunday, I did a 5k that was just to set the benchmark of how to train for the Duke one and this Saturday I get to do my first marathon ever pushing a stroller (probably the only one). And so I’ve been focusing on focusing. The ability to hold my attention and memory on things isn’t what it used to be but something has gone right over the last couple of weeks because my Lumosity scores have been going up, actually higher than they've ever been! We tried ADD medications once upon a time but they didn’t work because the problem is structural not chemical. I think chemicals matter and structure matters but I still want to believe one of the mantras from Livestrong matters, attitude is everything. 
Anyway, the 5k on Sunday, my first 5k since October was my best, 17:54 on what felt appropriate, a new course, a Lion’s golf course. Lance Armstrong was there and while we’ve met before… and while I’ll always be grateful that he set up Livestrong… me, the guy who rarely feels awkward, didn’t know what to say because … well because I didn’t know what to say. But it went well noticed by me that so far March has just been annual check ups and no unwelcome surprises!

Monday I did my first MRI since June and I can’t tell you that I’ve missed these things. It occurs to me that this is one of the few things that I’ve never ever documented and then I realized why. When I asked they said it was a violation of HIPAA (healthy privacy rules) but they let me take a picture of the machine without me in it. I cried waiting for the test because while I’ve lost a lot, the one that’s worried me the most forever is that some judge really will think that I should only have supervised visits with my daughter because of two ambulance wake up calls both over a year ago and focal seizures, the most recent in December. Following advice, I grabbed an extra copy to hand over to my ex. And then I sat and waited and waited and waited and waited and waited and waited… as I joke in that video at the beginning of this, it’s not the suspense that’s killing me. My doctors usually take a couple of days to get back to me but showing how awesome my medical team is I got a call and documentation from them today. Obviously what gets put into medical records is different than just the conversation between patient and doctors since those take 30-60 minutes and documentation is at most a few pages. But the Duke guys once upon a time told me to keep running and let me put off brain surgery. All of my doctors have not joked around with me at first but eventually they all have and I knew today that the latest addition to the team had finally understood me when as they let me know they were sending over the medical records, one of them said, “I’m not sure I can say your mind is stable from the way you run but everything on the MRI is.” There might have been a little bit of crying then too and then I headed over to Kiana’s school where the days she has started with me all have perfect attendance, her grades are still high and was comforted by that the two things I always ask about, can I keep running and am I fit to raise a kid, well, I still have the Universe’s blessing on them. I might have been singing I could have danced all night and done a spin around the stop sign before the school and gotten some strange looks. Hey, if I get to keep living, those looks are looks I can live with.
I went to the final session of the wonders and worries session parenting group tonight. Kiana had looked at my MRI with me yesterday. And my ride asked an intriguing question… do you do these events just to look good for your custody hearing? And the answer, may it be completely clear I went to all of these type of events long before the custody was up for debate. And I go because the human touch is a whole other world. I run with a group not just because of the coaching but I love the race reports for the human element not the biochemanics. Livestrong has been criticized for not funding for more cancer research but I don’t care. I am raising money for that for Duke and the Brainpower 5k but I’ve also raised money for Livestrong because both the science and humanity matter. And to me, the guy whose biggest worry on the hospital bed was not leaving his family broke, there is no progress that I’m more proud of than realizing that the humanity matters more than anything.


So tomorrow my attorney gets handed some things to pass on to show that yep I’ve got cancer, that perhaps the fact that I’m running a marathon with a stroller shows some part of my mind is not stable, but that the love for Kiana absolutely is. So anyway, I did some dancing and singing. And like 2 years ago, there are no medical appointments after and I choose to have some faith that my medical condition is stable enough to where judges are not going to change Kiana's life due to some of my limitations.  This weekend I’m going to run a marathon pushing Kiana. No promises on results, you know I’ll be leaving it out there and nothing shy of an ambulance will stop me from getting a cross the finish line. I've gotten people who have said I've gotten them to run more, to exercise more, to do their first marathon, to volunteer more. That all feels incredibly odd. But today, someone commented today that I inspire them to love more which may be the nicest thing anyone has ever said to me. Anyway, Saturday, tt’s the gusher marathon and guess what, when I get across that finish line a half second behind Kiana, I’ll be gushing. 

Friday, March 1, 2013

March Forth


As with some other entries, warning: this may be more bitching and moaning than normal ;).

March 1, 2011, checking into Duke, MRI’s, bloodwork, EKG, EEG, brain surgery. March 1, 2012 waking up in an ambulance, MRI’s bloodwork, EKG, EEG reminding me about that. March 1st, 2013… hoping for some quiet boring days. I mean I went and watched the Dr. Seuss school presentation, had breakfast with an old coworker, I’m going to the birthday party of the person who I first collapsed in November of 2012, going to the hockey tickets that I won on that 30k pushing a stroller, going to a party after that.  Tomorrow I am going to a 50th birthday party, a run, a marathon celebration at Luke's. Sunday I have a 5k and a fine wine and dine party. This is my version of some quiet boring days :).

The first MRI since June is on Monday. Once again some bloodwork and getting metals injected into my system and while I honestly fall asleep in that machine during the test, I can’t say that I’ve missed these procedures being more regular and hope that we don’t have to go back to that. It was authorized for March and they could do it today, March 1st,  where it conflicted with an event above on Monday and the guy who likes that he was born 8/8/80 thought he shouldn’t tempt fate and settled it for March 4th. 

I’ve kept running the last few days but every single run has been with someone else there still nervous about last year. I keep trying to figure out what went wrong in Austin and I gotta get a new ipod but I’ll tell you that I have infinite more respect for those people who run without music. I threw up 4 times at the finish line at the VIP section which was the same amount as on the course. I drank and ate a lot after finishing and it just didn’t stay. The only thing I think I could have corrected was that I eventually stopped eating shot blocks and drinking the last few miles which is why I think I couldn’t generate any power for the last few miles. But there’s also one other thought, Austin, the only time I’ve ever qualified for Boston, Kiana and her mother were all along the course. This year I had asked her mother to trade this weekend with me due to a wedding where Kiana had been asked to be a flower girl and to the marathon; I had asked for this last summer. Her mother had said yes and somehow in January her attorney let us know that wouldn’t be happening. This week we’ve been arguing with the school where we both literally turned in forms to the school where I stated she should be accepted into the GT program and her mother wrote it that she did not authorize it… I still and always will take responsibility in the fact that I mishandled the cancer diagnosis and that helped push her away but with things like not letting her be a flower girl and objecting to the GT program well… let’s  just say that I echo the prayer from fiddler on the roof that God bless her and keep her… far away from me.  

Still, the marathon vomiting ate at me a little (no pun intended) and I got invited to do another one. I’m now in 5k training mode so I wasn’t interested but said unless they let me do it with a stroller, I’m out. So, I emailed them throwing out my half marathon stats, my stroller division results and the 30k results (all races that either had before me or were kind enough because of me to allowed strollers), and they said they would sleep on it. In the course of the dialogue they would find out about why I do this and I ended up getting a yes. They shared it on their facebook status and it was well responded to (https://www.facebook.com/Gusher.Marathon). I don’t know that I’ll have the legs back to get a great time but on the 7th day of next week, I’ll do my 7th marathon with Kiana once again coming in ahead of me. I kept saying that I’d retire after I broke 3 but I’m not sure I could have retired from marathoning without having that princess there to hug at the end and now she’ll be there to cheer throughout the entire thing and I hope/dream this will be the best marathon ever. The half marathon I did with her wasn’t my best time but it was my best time. The one I qualified on where I hugged her at the end and the one in Boston where I stopped to hug her, those were the best ones.

I still haven’t replaced the ipods I killed on that but let me assure you I’ll be running it with music plenty of it disney. I am unclear as to how people run without it but I have total respect for them. But assuming nothing goes wrong, I’ll be racing like I trained with music and with Kiana and with a smile on my face.


So yeah I said there was going to be bitching and moaning right cause something went wrong 2 weekends ago, 2 years ago, and last year, and because I’m scared/nervous about an MRI on Monday, March 4th. Yeah never mind those moments. This weekend I am having dinner, drinks, runs, fun, with friends and family and next weekend I finally got accepted to do a marathon pushing a stroller. Forget the last Marches, we’re marching forth.