Thursday, January 31, 2013

Survivor's Guilt


Today Brian Rose passed away. He was part of the same navigational campaign as me, www.livestrong.org/brian and http://www.youtube.com/watch?v=i5KfySVkqyw . He died today in his mid 30’s. I met him less than 5 months ago and today he passed. These are the days where you have survivor’s guilt, where you wonder how the hell some people who are far far better men than I’ve ever been don’t make it. These are the days where I am comforted and comfortable with the fact that I chose to spend my time with my daughter. She’s six years old and by the grace of God, I don’t know if there is some sense of purpose people feel about survival but I choose to believe that I am standing to be able to stand next to her and hold her hand. And there are zero good parents in the world who wouldn’t take the opportunity to do so. In that original hospital bed all I was worried about was providing financial resources was for 2 great girls in my life… well now there’s only one of those girls left. The money is there and so now I’m focused in on the time and the relationship. Now an insurance is paying the bills and I wake up, get my daughter ready, get her to school. I am there the moment she gets out.

At the 30k on Sunday, a runner said after the awards, man if you can do that without a coach and with a stroller you ought to get better training and you could be seriously competitive. I smiled and couldn’t care less. I’ll walk with her rather than win an Olympic medal.  People have said you were valedictorian; I bet you could find some compensatory strategies and get a job. Let me be clear, if I could get a job and be a millionaire, it wouldn’t be a fraction of what each second with her is worth.  There will come a day where, like all children should, she’ll want her independence and want to push back and when that day comes, when that day comes, I hope to be the one whose heart is broken cause his little girl has become a woman and that it’s time for me to watch from a further distance. But if the day comes where I leave in my 30’s like Brian did, then swallowing my pride and my attitude than I can do “anything” was completely worth it to get a few more moments with that moon princess.  I rarely think I will beat this, I’m a poker player, you bet the odds but if I manage to beat this thing… I can’t imagine regretting that I put my effort into catching as many moments of this kid’s life as possible. And if that’s the lesson of cancer, please please keep teaching it to me. If the day comes where I beat it and she’s grown up enough to not care if she gets kissed goodnight, I don’t care if someone finds me fit to clean bathrooms or offering would you like fries with that. The pride from that stuff is long gone.

Brian and another girl I met through Livestrong both went through whirlwind romances after cancer and got married. When I met Brian, he was there at the dinner with his wife, Lupe who was pregnant while he was in treatment. We had watched each other videos and I think we both felt that in the short exchange we had some real aspects of us captured in those films but that it was also nice to meet each other in person. He was going through treatment and we both had our own lives so we only ever exchanged a few messages but perhaps my favorite thing he said to me is that Livestrong should have gotten me running with a stroller… That 30k picture of us finishing and winning my age group and both of us smiling is my Facebook profile picture. And trust me even if I break a 3 hour marathon in 2 weeks, that 30K will still mean at least 8 times more.

I am not at my emotional sharpest today. I’m not sure I ever am. But today, while most people were at work, I was doing my daughter’s laundry and spent a few minutes with her after school before her mother arrived. Tomorrow I go to be the “mystery reader” at her school. Mondays I volunteer at their library. When I graduated Valedictorian, when I graduated Suma Cud Laude with 2 degrees, I promise you that being a parent wasn’t something that concerned me or that I honestly cared much about. Now, it concerns me more than anything.

Once upon a time I wanted to pay it back but I choose to pay it forward. I am trying to do it as well as I know how, continuing to volunteer for running events, now that some things are more in order I am going to get back to helping organize tournaments in ultimate more. I am also currently fundraising for the two organizations that helped me fight the most and today we will make it special. I have gotten to make some connections through this process that until the memory itself fades will be permanently etched. One of those has been Livestrong and the Austin Marathon, if you want to support that cause http://laf.livestrong.org/site/TR/Endurance/Endurance?px=1004553&pg=personal&fr_id=1390 donate here. If you live in Austin and donate at least $25 today, I will get you an Austin marathon bag. The other is Duke http://dccc.convio.net/site/TR/Angels/AngelsAmongUs?px=1118121&pg=personal&fr_id=1150. If you donate at least $25 there we will be doing a raffle where you could win a 4 night stay in Sonoma, the place I went to from winning the trip from the Brainpower 5K which is incredible. If you can’t, you can’t. If you can only donate to one, well today donate to Duke because somehow I dropped the ball there and this is the first time I’ve raised money for Duke despite having done so for brain cancer research and for Livestrong.  


And whether it’s your daughter, your friends, your girlfriend, your mother, hug someone tight whether or not you donated. Because if you're reading this, both you and I survived today and surviving through that hug is something you should have no guilt about. 

Monday, January 28, 2013

Feel Like I Belong


A 30K pushing a stroller… when I signed up… I didn’t realize the weather was going to be quiet as warm and humid as it turned out. I thought if I did it with a stroller it would help me “slow down naturally” since the marathon is now just 3 weeks away… and for those who think I don’t have an ounce of quit in me, I’d spend a few days trying to talk Kiana out of it just because the weather was looking rough. The day before, when there was a prediction of rain and hot (by my race standards anyways since it was going to be in the mid 60’s), I told her I could get her a movie or something, and she responded with well I can wear a swimsuit… She even went and found them and this fashion queen tried on which one she wanted to wear. It was actually too cold for a stroller but that didn’t deter one from putting her one on when we were getting dressed in in the morning (she changed).

Other races I’ve done with a stroller I usually start in the back because people don’t like strollers in the front because they are going to be in the way but I had the credibility and friends to start this one in the front. The playlist was mostly songs Kiana and I listen to together. They ranged from Disney songs from Cinderella to Will Smith’s Just the Two of Us to a song from the Vincent Van Gogh doctor who episode that we both like.  When I run with her either in races or a run I always carry my phone as both the music player and as “insurance” in case anything goes wrong (thank goodness nothing ever has), but perhaps because this was the longest race we’d ever done, it was by far the most she’s ever talked to me in a race. The music was relatively loud so she’d yell daddy and then I’d turned it down and we  had a little conversation. Usually, they are shorter so we're going faster and at mile 4, mile 4! she turned up and asks when are we going to start going faster? I had no good answer. There was a hairpin turn that we popped up to one wheel to turn it fast and she “whooed” and asked if we could do that again. We accidentally hit a curb at a turn and she said she liked flying.
The volunteers were kind enough to splash me because running in that weather even without a stroller I would have needed it. Kiana would yell for them to do it too. We had listened to the playlist the night before and she video taped the entire thing as we skipped through songs (that will never be posted on here since my singing is horrible) and during the race she wanted us to karaoke to the speaker. I didn’t have the lungs to do it the whole way but while the crowd we were passing by was clearly amused at us singing, “Am I a man or am I a muppet?”.  It was less clear whether those I was running next to were amused or annoyed as we sang Toy Story’s “It’s the time of your life so live it well” and Monster’s “If I didn’t have you.” Either way, makes me think karaoke might not be so bad.


Carry on came on, as I had hoped, on a tough hill at mile 8. I buckled down because the headwind made the stroller a sail. Someone passed me and asked if the way I was leaning on the stroller made it easier than running without one. I smiled and let’s just say that was one guy I committed to  making sure I finished in front of (I did). At that moment though I focused on the lyrics, My head is on fire but my legs are jut fine and so I carried Kiana. About then, this girl who came with me the neuro oncological appointment, was also there cheering us on. Kiana waved as we got cheered. I pretty much just kept trying to go uphill.

Still, about mile 14, it was the most emotional I’ve ever gotten during a race. This song has made the playlist of a few races. It’s Go the Distance from Hercules:

I will find my way
I can go the distance
I'll be there someday
If I can be strong
I know ev'ry mile
Will be worth my while
I would go most anywhere
to feel like I belong

It was inspirational to hear Kiana belting it. I’ve spoken of the loneliness of this journey many times. But perhaps that’s a misunderstanding on my own part, because there have been people there all along. And no, no one gets every part of it but is there anyone of us who someone understands every part of their life? But on that course, my daughter was in front of me singing. There were people along the course and/or after like Matt from Hawktober, staff from Livestrong, staff and friends from the Austin marathon, friends from the Ship of Fools, friends from team Luke's, the director of the brain power 5k, the girl who came with me to my neuro oncological appointment. Maybe this journey is not as lonely as I sometimes think it is and at least for one day, one 30k, it was perfect.

I was getting some post race treatment when it was announced that I had come in 11th over all and won my age group. Not won the stroller division, but won my age group 30-34 pushing a stroller in the longest race I’ve ever done with her. We went to a great brunch afterwards with some running friends where Kiana got a balloon because well she finished ahead of me and the victor (once in a while) should get spoiled. We came home and I downloaded Hercules. Kiana watched it while I sat in an Epsom salt bath. The medal, like all the races she’s been a part of hangs in her room. Every mile was worth the while and I had gone somewhere I felt like I belonged. 

Wednesday, January 23, 2013

The Ultimate Measure


In the previous blog entry, I quoted MLK, the ultimate measure of a man is where he stands at times of challenge and controversy. When this is all started, I wasn’t standing as well about some important things. I have sat with help from friends, from family, from professionals that give me guidance regarding financial, emotional, medical and priorities much better than I did when this all started.

Three days ago, I went to play ultimate as a substitute in Winter League. For a guy that used to play so much, I now only play when Kiana is with other family having switched to running because it’s more efficient while still feeding the mind and body’s health. So now when I go play, I have to play as a substitute for whichever team is lacking the most people. Sunday was at best… awkward… because the team I was assigned to was with an old friend who once was offering his parents house as a place for me to stay during brain surgery while having an affair with my wife…  a guy who I’d removed from my property and has a criminal trespass warning… a guy who is suing me. I’d played against him and been civil but I’d be lying to say I didn’t feel like asking for another team but I swallowed whatever you want to call it pride machismo and realized that court on Wednesday said that Kiana in daycare because of all those scenarios and there was too much tension when him and Kiana’s mother came to drop her off and pick her up. And I played with him and reminding myself that if this is what it took to show that I should keep custody of my child, of course I would do it. All good parents should put their child above their own pettiness so I tried successfully. We didn’t say hello or high five and I was less friendly than I would be to a stranger but we were both civil adults.

When the affair all came out, ultimate, a generally liberal crowd mostly socially abandoned this guy. They thought what he did, as I think, that it was fairly socially unacceptable and the team he and I played together told him he wasn’t welcome anymore, that they weren’t a moral institution but this was too much. I don’t play as much anymore but somehow it’s more comfortable to know that it’s unusual that I will crash into him during social events. He is a stark reminder of the negative side effects of cancer more than the scar is.  That social shunning was some measure of the community and I’d be less than honest to say it isn’t a relief to know that when I show up at most of those functions, odds are he won’t be there.

Two days later, Tuesday, yesterday was an odd day. I met with the attorney to prepare for the hearing where we were stating that I would pick Kiana up from school everyday but asking that they let us know what time they would be there so we’d have some flexibility as to what to do. They were stating Kiana was better off at daycare because of the tension between her boyfriend and I and because her mother’s schedule was too unpredictable and he had to be the one who picked her up sometime during her visits. They were asking for medical records in perpetuity and we were stating no to that and that they be kept away from this same individual (can you tell that he’s an influence in some form; people have wondered if I am copping out on all this placing the blame on him but we are who we hang out with and someone who engages in that type of sociopathic behavior is a bit scary to me). From there I went to go see my Neuro oncologist and let them know that tomorrow there was court and that he should tell me if he ever saw something that I don’t recognize and that the kid shouldn’t come with me. The girl mentioned in the entry “With and Without you” insisted on coming with me, semi got uninvited and said well I’m showing up. She was there for the entire appointment and explained some things to the doctor for/with me. So in my first appointment in 3 months, I took a girl with me who I kissed on new year’s… but I’m still George Clooney… I promise.

From there, I went to a parenting class with wonders and worries with parents who had terminal illnesses or perhaps the most heart breaking one, of a parent who was still working with their child on their father’s quick passing. So it was an odd day before court but I remembered Beecher’s quote: "Every tomorrow has two handles. We can take hold of it with the handle of anxiety or the handle of faith." And while the fact that I woke up at 4 AM showed that there was some anxiety I went into it with some faith. Somehow in response to the last blog entry it was nice to have this: "You're a true model of cancer survivorship and an inspiration for so many - not because you've done everything "right" or "perfectly" because that's not even possible. You're an inspiration because you don't have an ounce of quit in you." As I’ve said along, I am not trying to inspire just trying to live but if the fact that I don’t quit is inspiration and it otherwise lets me be human, I accept it.
When the case was presented before her, the Judge had the Wisdom of Solomon. She stated that Kiana would be better off with one of her parents after school and that if her mother didn’t let me know that I would be the one picking her up and would wait at home until Kiana’s mother arrived. She originally was leaning away from this until she learned I lived one block from her school. That distance from the school was the reason I bought a house 1 month before Kiana was born and that move is looking more and more brilliant. The judge was right that Kiana’s mother shouldn’t have to revolve any of her visitation time trying to find me. The judge was also right in that Kiana is better off with one of her parents and who they choose to introduce her to rather than just whoever signs up for whichever care. The judge also was right in that she gave permission for my medical records to be released to Kiana’s mother in perpetuity. I’ve told all of this to my doctors for a while now and frankly, that’s the right decision. If I were in her mother’s shoe and she had a terminal illness, I’d want to know how things were progressing, and I am grateful they are progressing well. There may come a time where I can’t do this and my doctors and friends know to look out for that., call me out on it and I will listen. But the Judge, showing how she became one, said it would be great if I acknowledged it but in case I don’t let’s put in the safety measure that Kiana’s mother can have it in perpetuity. Ironically, appropriately, choose the right word, the arguments where too much time was wasted were over her boyfriend (see what I mean about that being a dumb issue?) and again showing the wisdom of Solomon, the judge said her boyfriend, Andre Dumouchelle, since it’s now part of public records, was specifically named as someone who couldn’t have access to my medical records. He also could not ever be the one to pick up Kiana and she believed (as do I) that will decrease some of the tension of this situation. She pointed out correctly, as is demonstrated by Sunday, that time has decreased some of the tension as well.

Court had an audience that I didn’t realize in the court room. All four of the who had gone to Duke from Austin were  there. Myself, Kiana’s mother, and two friends who were there in both the original hospital room and would be at Duke. And now two and two of us were on opposite ends of the table.  There were some interesting things said in court but the one I will quote me on is, “I am not going to say on my deathbed I wish I’d spent more time with my kid.” So I believe that where and I the judge stood today is correctly in times of challenge and controversy, stand for what’s in the best interest of the child. These are only temporary orders and who knows how much longer this case will drag out. But as I did after the last court hearing, I went and had lunch with the kid. But the judge today, said that Kiana is best at all times with her family which to me is how I hope this story always plays or at least as long as possible. So today, family court showed that it really does exists for family and in the best interest of the child. Kiana won because she now gets more time with family. And I want to teach her that our ultimate measure where mother and I failed at that when things are stuff, where you stand is next to someone you love. Kiana won, cancer’s still losing in my book and I’m done with this blog entry cause I have a kid to go pick up from school and stand next to her as I do my favorite new workout, walking her to and from school 5 days a week. 

Tuesday, January 22, 2013

A Public Thank You to Livestrong


It can’t be fun to be at your job these days. Dealing with cancer as part of your daily lives, like I have to deal with mine, is not a “great” experience by itself much less with other distractions. My parents were never married; well they were just not to each other so I can personally relate to that sometimes imperfect origins create confusion but keep looking forward. But let me state this to you guys, you were there when I thought my dying day was sooner and until it comes, I’m there for you guys.

We like good stories about athletic achievement and the Austin running community has enjoyed stories about the fact I put off brain surgery to run a marathon and qualified for Boston, that I won Austin’s first Brain Cancer research race, that I came back and won the cancer survivor’s division. I am appreciate of all that and certainly the last couple of years have made me literally grateful for every step of every day. But running is one of my therapies and while I happen to be a guy who runs fast, I do it because for a few times on hill repeats, on track workouts, in long runs, for a few moments I am a little bit ahead of my problems.

But when I first called you guys, a few days after I got diagnosed, you gave me insight into how to choose my own doctors. This all started in the ER and, while I snuck out of the hospital to get an 8 mile run in the day before the biopsy, not one of those doctors is still part of my team because they wanted me to give up too much of my life. I’ve accepted some losses of some activities but I found the kind of team that you guys are, a team where perhaps some losses are inevitable but you fight like hell to keep the important things and you have helped me prioritize them.

When I first made that phone call, all I was worried about was about medical and financial issues. You helped there and even before the surgery would happen, my friends would throw a tournament where some of the proceeds went to you and some went to my medical things. I was grateful that a year later I would be the one organizing the tournament. But then, you also pointed me to Imerman Angels and it wasn’t until I realized how rare this diagnosis that I asked you to connect me with someone who shared it. It turned out at the time, no one in their network would have it but by the grace of the universe in the middle of the tests, someone would sign up and I would get a call to be told that. Her and I are still in contact. You recommended Wonders and Worries which I blew off thinking I obviously knew how to communicate perfectly with a 4 year old, I’d just tell her that daddy  had a booboo in his left temporal lobe. When I went to your parenting class, that was the first thing the presenter said not to do, to not be over protective but also to not make it trivial. It wouldn’t be until the second time I woke up in an ambulance, a few days after winning the cancer division that I would enroll her but since then are conversations are much better. She’s actually come with me to an MRI where the techs explained things to her and to see my neurosurgeon where she sat through part of the appointment. She walked out for the second half but when we talked later that night, she said, “Daddy, no matter what the doctor said, you’re going to be okay.” I hope she’s right. Tomorrow I start the 8 week parenting class with wonders and worries.
There was a time where it looked like this was gone but a biopsy was sent to John Hopkins and it’s still there but having sat through your cancer transition class and with your counselors helped me connect with some people who are still helping me process it. I went to both your cancer and relationships class and your cancer and emotions class. I was amused when one of your staff thanked me for coming to the cancer and emotions class and joked with them, I’m pretty sure you guys made a video about how I suck at this. I didn’t go your counseling and classes because I’ve got it all together and I’m a long way from home but you guys have gotten me much much further than I could have ever imagined.

By the kindness of the universe, I got to train for a Livestrong century and one of your staff taught me how to ride a bike. Due to the side effects of this thing, blackouts, seizures, some cognitive issues, I am on a driving restriction which due to some things in December is likely going to get extended. But I’ve only ever done 2 bike rides, both your centuries and turns out biking to medical appointments impresses your doctors and for me, it helps cool my nervousness.
I’ve tried to pay it back however I can, raising money for the organization and being on your video has made me get a few phone calls from people I didn’t now. I listen as best as I can and always point them to you because you’re much better at it. Trying to keep the “obligation of the cured” that someone once told me and that also took a while for me to realize that it was much better to funnel it forward. While I like the obligation phrase, I don’t consider any of these things an obligation, I consider it my privilege.


On MLK day, I remember his quote “The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy.”
I think you guys are standing very well. There are plenty of people who think beating cancer is awesome and it is but it’s no more or less awesome than being born. What you do with is what it’s important and Livestrong has taught me and many many others how to stand better.

At my house sits a poster that you guys signed and in my daughter’s room sits a little tile that was made. On my wrist still sits the very first band I ever wore. I can’t imagine what day to day there looks like right now but keep up the good work.

Sincerely from a guy who you helped save so many parts of my life,

Iram J. Leon

Saturday, January 19, 2013

Holding out for a Hero


People were kind enough to donate a couple of songs through that fundraiser. They were incredibly nice but one dedicated by someone was “Holding out For A Hero,” one I’d heard a long time ago watching Shrek . The lyrics are sweet and the beat is good enough to where it got me to add it to the upcoming Austin Marathon playlist:

I need a hero
I'm holding out for a hero 'til the end of the night
He's gotta be strong
And he's gotta be fast
And he's gotta be fresh from the fight

As I watched the second part of the Lance Armstrong as watched this fallen hero, this guy who had cheated in a sport, and I watched some of the friends and staff members I’ve come to respect in the organization have to be bashed and seeing people calling an organization that helps people incredibly inappropriate things, it was tough. The cheating by Armstrong is bad enough but what I am disgusted by is the fact that they (he and his attorneys) went out of their way to damage people who were telling the truth. But I am also disgusted by the fact that there were others who in the anonymity of the internet were taking joy in someone’s fall. I am a gigantic fan of MLK and love the fact it’s service day in honor of him. But a man who was a preacher and loved his wife, failed at many of his own morals, having more affairs than most people have relationships. He plagiarized much of his graduate work. But that doesn’t make him worthless, it makes him human though as I’ve said before, it’s not the sin that kills you, it’s the cover up. I’ve got nothing to hide. And I want to stay positive to echo, MLK’s "Darkness cannot drive out darkness; only light can do that. Hate cannot drive out hate; only love can do that."
I’ve made mistakes my whole life, many chronicled here. I’ll make some more but I’ll own them and I don’t try to not harm anyone who is trying to point them out. Someone commented on my remarks about Lance, who I have never tried to defend, that they’ve done a 180 on him. They state that it’s awesome that he beat cancer but beating cancer is no more awesome than being born. Both are awesome but it doesn’t matter if you get the gift of life or a second chance at it. It’s what you do with it. And again, I made mistakes in both life part I and II but I am proud of my batting average.

One of the people who seems to enjoying the fall of Lance Armstrong is someone who used to be married to me. A mutual friend sent me her facebook status:
"Here's the problem: People like Lance Armstrong (and my ex-husband) lie, and cheat to get their attention, fame, money, handouts, whatever and they don't mind using cancer, they don't mind using courts to sue the mess out of people, using innocent 5 year olds in video campaigns, they don't mind bullying, altering the truth, redefining 'cheat' , they will twist reality whatever way they need to in order to feel accomplished, adored, and like they won. They have no regard and no respect for the generality of population because they think they can manipulate it in whatever way they want using the media, using 'good deeds', using blogs and foundations. It's incredibly machiavellian, incredibly dishonest, and incredibly damaging to themselves, to their children, to other people and other people's children, to charity causes themselves, to heroic ideal."

I don’t know what I’m lying about. Hell I was annoyed about the fact that the first Livestrong video I came out in was how I screwed up things but I am glad I owned it. And the friends, who have helped through this thing, and my doctors, have had to push me to accept help. I’d much rather be the guy who sneaks out of the hospital to run and qualifies for Boston and is a romantic story. But that’s not the totality of reality. I am also the guy who has cancer and needs to prioritize appropriately. And I believe I have. I have volunteered for races, for Livestrong, for hospitals, for ultimate events, for marathon kids, for a political party (I voted for Pedro) but every single one of those organizations has gotten the exact same answer, I am done about 2 because I’ve got to bike home and walk a block a kid to pick up from school.

The only thing I’m trying to cheat is death. I have less money, no fame, and if people want to judge me for taking me insurance that I’d paid for and the insurance and my doctors felt I qualified for on a disease and it’s side effects, both of which I had nothing to do with, judge away but make sure if you ever have an accident with your car or in your house that you don’t use insurance. No wait, that’s what insurance is for. Maybe there are those whose ideals are that there was a perfect guy sent from heaven who got it all right and we can achieve through effort or grace or whatever your religion is. I am an idealist but I also don’t ever want to treat life like the enemy of the perfect is the good. Obama said a remark when he got elected that the media would criticize as too cheesy but I love it, he said we are the ones we’ve been waiting for. I don’t know if the cure to brain cancer is coming in my lifetime but that livestrong quote continues to be true, my friends and family are saving my life.

And whatever criticism she’s thrown at me to these organizations, the question that no one who talks to me has ever gotten a clear answer to is if he’s such a horrible person why did you sign primary custody over? Let me be clear I don’t think Kiana’s mother is a bad person. I think the diagnosis scared us both and we both dealt in less than the best ways with the emotions of a death sentence. But before that, she stayed home for a year, nursed for 2 years, and worked at Kiana’s daycare with a master’s till she was almost 4 because I think most (all?) good parents think that there’s no point to having kids if someone else is going to raise them. Sometimes this is a financial necessity but I can’t imagine many good parents who think their child is better off with someone else. I assume the comment about suing is about Armstrong since her boyfriend is the one suing me.

Court is set again for next Wednesday, the 4th time court’s been set and I don’t care how long it gets dragged out. To me it’s the same as however long this cancer drags out because each one of those days are extra time with my daughter. With this second video, I’ve gotten some very nice comments about being inspirational. As I’ve said here and essentially said there, I’ve never been trying to be inspiration, just trying to live. When I ran with a stroller, the policeman shouted when I came through again at my mom that I was his hero. And I’ve gotten those kind of remarks a few times. But a cursory reading of this blog would tell you that the coverage of the last finisher of the Austin Marathon impressed me more than the winner. Amy who does Triathlons with a missing leg impressed me more than the guys who set records. Matt who had to relearn to walk and is 4 weeks from his first marathon impresses me more. My mom doing her first half marathon coming from a generation of people who don’t exercise doing her first half marathon at age 60, that’s heroic. While I got an invitation to one of the more elite training groups in town, I passed it up and the group I train with and the group I coached are both where no one who reads this blog would be the slowest person there. And most of the people who help out with both training groups, like me, were volunteers. Tonight we’re having a dinner together. That’s heroic.

Today, I ran 15 miles a little faster than I want to keep for the marathon using the emotional moments from this week as fuel to have a much stronger run than I did last week. Afterwards, I went, actually for the first time ever, to a breakfast where everyone there were brain cancer survivors. There were some interesting perspectives that I didn’t know even though I’d met some of them (I only remembered one). Someone got the diagnosis while they were pregnant and it also started with a seizure and they got rid of their car (they were still making payments). Mine is paid off and it sits in my garage uninsured in hope that someday I’ll get to drive it again. We talked about things that occurred before we realized what it was. I had these moments were I couldn’t focus or think in words for a few seconds and found a way to play it off (the last one of those actually occurred the night before the Austin Marathon of 2011). After the diagnosis, people thought it was because I was getting choked up and I’d just tell them what it was. Before the grand mal seizure I’d seen a doctor but he thought that due to my sports activities it seemed like symptoms of a concussion. He didn’t think an MRI was necessary. It was the same sensation I had when I couldn’t read the menu before this adventure “officially started.” People talked about side effects from the steroids, the radiation, the surgeries, the chemo. Some people had their taste change. One person got diagnosed a month after he turned 21 and can’t ever drink again. He was just turning to Livestrong for help with sperm banking. (As far as my stance on Livestrong, let me state this once and for all. When I thought my dying day was closer, they were there and until it comes, I’m there for them). People talked about how their taste buds changed, vision changes. The only one of my senses that has changed is my hearing. It’s not as good in my left ear but I don’t honestly notice it except when I’m running that it seems like the music is so much louder in my right ear. Also, there are times where I get very sensitive hearing and those are days Kiana and my cousin don’t get to wear heels on my tile floor. One of the survivors use to own a business and he says that he just doesn’t buy the fact that he has less than a 30% chance because that’s the doctor’s job to sell them the worst campaign, the same way he used to tell people that you need all this for your carpet to be super clean. The only worry that we all shared (besides death) is that we all worry more about headaches than we used to. But it’s those human connections that helping with these organizations have made me appreciate me more. And again, these guys some who tried to go back to work, some who immediately left the work force (none of whom are working now), each one of them is trying to do something better with their second chance and that, that is heroic to me.


I am no hero, never have been, and rarely think I'll beat this. Just a guy who runs fast because it's his therapy and for a few times on hills, on a track, or on a long workouts, running lets me stay for a little while ahead of my problems. Wednesdays, unless court gets postponed again, a lot of this leaves the blogosphere and it becomes legal public record. And I need the court to understand only one thing; I am no hero but I am a good dad.

Friday, January 18, 2013

Compensation


There stands the cost is another song I’ve been listening to Larnelle Harris these days. I am amused at people who think I’ve got it good because of the nice parts of the cancer story. I just filed my taxes and man I am good at the tax situation. Last year medical bills and divorce got me a tax refund that I was surprised at. This year’s 9 grand medical bills, having kept up with the payments on this house, single parenthood got me another tax refund. When I mention it to friends, they are like wow that’s a good tax refund. Umm, it’s less than the medical bills… wanna trade? No one takes me up on it.

It’s been an interesting bit of luck since I commented on Lance Armstrong. Within a few hours of me posting that and it was a compete coincidence, they posted two other youtube videos with me of how they had helped. We talked about this when we’d filmed it all but I’d forgotten about it. This one is definitely my favorite one of all the stuff I’ve done, finally some of the jokes made the cut: http://www.youtube.com/watch?v=X5cKt9vBeFA. I went to that 5k with Hawktober and the founder of that continues to be one of my heroes. A guy who had to learn to walk and is now about to do a marathon. Talk about someone who knows that you never take a step for granted. But in regards to that Lance Armstrong stuff… I don’t care. He wanted to make his narrative that he was a great hero. I am not, I am just a guy that had the wrong fear when I thought I was on my deathbed, that my wife and daughter’s bills would not get paid. Now, I have the right focus that money comes and goes but moments with her are irreplaceable and I am going to get as many of those as I can. I still love Livestrong. To me, the faces of Livestrong are all from the last couple of years. They have been the staff that pointed me to the right type of doctors, that connected me with someone else who had the same diagnosis, others who had to deal with a divorce during medical issues, others who learned which limits to accept and which ones to push, counseling for me and Kiana about the appropriate way to communicate with a six year old about it all, counseling for me, a staff member who helped to learn to drive my new car (a bike), volunteers who would give me rides , and an "engagement" ring which made out of the same yellow material which reads hope. I may have screwed up my handling of the diagnosis with my high school sweetheart but I'm not screwing it up with the one I want to be at her high school school graduation. And that’s what I think about when I make Kiana breakfast, the part of my living that is the strongest.

Yesterday I got my first sponsored race from Luke’s Locker, a distance I’ve never done before, a 30k. And I am going to do it with a stroller because I want to keep pushing how well I push a stroller and I figured there is only so many of those races where Kiana will get to run there though I hope in due time we’ll be running them next to each other instead of her constantly beating me by just a couple of seconds.

As I watched the Lance Armstrong interview someone let me know that I was both currently on their homepage, www.livestrong.org and on their blog the day of that interview which felt eery.  Frankly it was a nice distraction from worrying about court where I am going to argue that Kiana is better off with one of her parents and her mother is saying she should use some of her time of possession for Kiana to be in daycare. It makes no sense to me when I’ve offered to watch her for free.

But for me that’s the cost of swallowing my pride, more time with my daughter. Sign me up for that over and over over again if that’s the cost and compensation of cancer. The arguments her mother and I have are to me ridiculous. I argue she should have nicer glasses than what the basic insurance costs, her mother says let’s just do the minimum. I argue that she, due to cavities, should only have fillings the color of her teeth. Things like glasses and teeth are part of who you are (most of my front teeth are fake by the way for those of you who like my smile due to discoloration from the water in Mexico) and having things like that mess with your confidence especially as a child. I don’t go to Duke because they were the cheapest, in fact they were more expensive but you do the best you can with what you’ve got and with things that are as part of daily life as glasses, teeth, and my brain, I will make sure I pull off the best I can for my daughter.

I still keep finding new compensatory strategies to compensate for my issues. Most of them I still only reveal to the people who I know well but for things like the face name recognition for the first time ever at a party at my house, for Kiana’s 6th birthday party, I used name tags. Kiana ratted me out when the first few people arrived and said that’s so that daddy knows who you are.

So yep yesterday Lance Armstrong had an interview. The part that bothered me the most was that he said that when he fought cancer it gave him a mentality that he would do anything to survive and so it taught him to do whatever it took to win. For me, ironically, cancer has helped me accept limits in some areas but not in running and not in raising my kid. He had an interview, Livestrong had a rough day I am sure, but I had parental advisory council meeting, I ran 10 miles at marathon pace and had a meeting about getting my daughter into the gifted and talented program. I joked there that obviously my daughter was the smartest, most beautiful kid the world had ever seen. But I also had to fill out a form where I explained some of the reasons I think she fit in and I swallowed my pride and said that the teacher had better examples but also bragged about how both Kiana’s mother and I had been valedictorian of our high school class. 15 mile run tomorrow, trail run Sunday, track workout Monday. Tuesday, I meet with the attorney to prepare for court and from there go to see my neuro oncologist for the first time in a few month. Court is next Wednesday and I am scared and nervous but I am going to trust that the judicial system will understand that my brain may not be all it once was but I am still fit and fit to parent.

Wednesday, January 16, 2013

Lance’s Performance Enhancement and My Privileges


Be warned, this entry will ramble more than most and that’s saying something.
Being in a Livestrong ad, having been part of a fundraising campaign for a Century, I obviously have had friends and a couple of all but strangers ask me about what I think about all this Lance Armstrong stuff. The honest truth is I don’t know that much about it and certainly have no strong feelings about the tour de France narrative since I never cared then or now about cycling. People forget a couple of things, one was that he started Livestrong long before he won the Tour de France. Those wins apparently make it a better story My races are small local ones that I’ve won which have gotten local news coverage at best if anything at all and some of that simply has been because of the cancer angle. We like a good story. I’ve learned many things from Lance Armstrong, some very positive things to do and other lessons to avoid like it’s not the sin that kills you, it’s the cover up. But as far as his apology, none of us can see the heart so I will not judge whether or not its sincere.

In this blog and in life I’ve never tried to pretend to be some great cancer crusader. I question why people are impressed with the things I do like exercise and prioritize above all things my daughter but I am reminded of Chris Rock, a black comedian has this routine about black people vs niggers. He says niggers say things like “I ain’t never been to jail, you’re not supposed to go to jail. I take care of my kids, you’re supposed to take care of your kids you low expectation mother fucker.” Some people call this paying things forward or backwards to things like Livestrong the obligation of the cured but to me, it’s the privilege of survivorship. Those low expectation mother fuckers when I walk my daughter to school are those who are yelling at their kids to rush out of their car and saying, it’s your fault you’re late. I gotta tell you, I have a strong willed 6 year old but I am never going to pass the buck on her for quite a while that her being late to school is her fault. To me taking her to school is not an obligation, it’s a privilege. To me running as hard as I know how is not an obligation, it’s a privilege.

Now guys like Lance Armstrong (and me) and all competitive people have some edge in them and some narcissism. It’s at some level an encouraged trait since society doesn’t have graduations and handing out of trophies and medals to encourage humility. I love and amused at the ad right now that state farm has with Aaron Rodgers that trophies are for people with low self esteem. What do I think about Lance Armstrong using drugs? I am not a fan of cheating. What do I think of him personally? I’ve only met him briefly and I am not going to judge someone on that little time with them. But it tells you something that I follow the news about him and have it on my calendar to watch his Oprah interview. There have been some amusing articles like that he was the dunce of the year in Texas monthly, others that incredibly hateful ones and I’ll let you google those. There is the one that made lots of vibration about why the person who co-wrote his books and obviously they made some profit together isn’t angry at him (http://articles.washingtonpost.com/2012-12-15/sports/35846813_1_usada-report-tour-de-france-victories-lance-armstrong) . USA today’s article is more my style http://m.usatoday.com/article/news/1566388 . The difference between who we are and what we’ve done is tough to differentiate. But they do matter since no one is 100% consistent. Hell, even when I found own my own wife was having an affair with the guy whose parents had put me up at Duke, I still tried to figure out how to fix the marriage, once again turning to statistics that 95%, yep you read that right right, 95% of marriages that last 50 years have survived at least one affair. It means if you’re going to make it to the end like a marathon, unless you’re one of the gifted Olympians, there’s probably going to be some small or big hiccups. I’d had my own years ago. As this blog talked about and as my friends knew within a day of it happening, when my wife told me she was leaving the day I got back from Duke and as the fights ensued out of my own confusion and anger, I kicked her. I was on steroids and no sleep and the worst emotional state of my life, but be assured I took full responsibility and I apologize for it. This was something I let the organizations know that had used me and probably the reason why if you go to all the other ads under www.livestrong.org/wecanhelp you’ll see the previews of everyone else’s ad show a picture of them and mine shows a generic picture. I haven’t sat in counseling and with a minister for over a year because I think I’ve got it all together.

I don’t quite understand some of the realities of cancer survivorship. Even the guy so committed to the George Clooney lifestyle has a hard time relating to why people do fertility preservation. I mean I understand it emotionally but I keep being the guy who wants to protect everyone from my disease why do people have cancer try to have kids when so many cancers are genetic and when recurrence and life expectancies are lower? Logically it seems so irresponsible but then I sit there and do my daughter’s homework with her and it makes a lot more sense that people want to stop cancer from robbing them of the meanings of life (that plural is intended).  

There are two things that Lance Armstrong said that I do love: “You don’t beat it,” he said. “You get very lucky and survive it. I don’t want anyone to think I beat cancer because I’m special.” And the guy who has accepted living off his long term insurance because I honestly don’t believe I’m going to make 40 and if the choice is between swallowing my pride and taking my long term insurance and getting more time with my daughter or going back to the rat race, well I’ll swallow my pride because even if you win the rat race you’re still a rat. There are people both survivors and lack thereof who have tried to tell me you’re going to be part of the minority, they wonder why don’t I believe this. Well, if you’ve read this back long enough, you know that when the doctors couldn’t decide whether or not surgery was too high risk, I had a poker game to decide. I’m a poker player and other than pocket 8’s, I bet the odds. But when Kiana went to my latest neurosurgeon with me a few months back, she was only there for the beginning and afterwards she asked what the doctor said after she left. They had resent the biopsy to John Hopkins and confirmed that indeed it was cancer and Dr. Friedman had once again said, yeah I still don’t think you’re going to make 40 (something other survivors have tried to get me to ignore that surgeons also just think in black and white) but Kiana would say, “No matter what the doctor said, you’re going to be okay.” And it reminded me of another great Lance Armstrong quote: “If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or Fight Like Hell.” And medically, financially, legally, I’ll fight but fight to get back to work or fight to spend time with my kid, hey if you think like Kiana’s mother who had the audacity to email, well you let me know when you’re “able” again, I couldn’t possibly care less about people’s opinions that I am using a private insurance I paid for and qualify for and have less financial resources because of medical issues to spend time with my daughter. Judge me away. 

Back to Lance, people have been clever and cut up their Livestrong band, I still have my original one on. They have made it say Liestrong or Lies on shirts and event paraphenelia. They try to seem to think a man and an institution are singular. But to quote that USA today article How does one get duped into using the foundation's website to get educated about treatment options? How can one get tricked into calling the foundation's hotline for advice when the daily challenges feel too big and bewildering?
How do young adults like me get scammed into finding an outlet to discuss difficulties, such as physical impairment, infertility, job or insurance discrimination and fears of recurrence? Where's the deception in encouraging people in low-income and minority communities to visit a YMCA for foundation-supported workshops on healthy living? Finally, how is it possible to get duped into believing that you can live with all your might even when staring down cancer?

I and others have struggled with fundraising for the Livestrong marathon this year. It may be a reflection of the old refrain from Thomas Paine that common sense is not so common. I am still proud that I am on team Livestrong for the marathon and on one of their ads at www.livestrong.org/wecanhelp as a thank you for all they did.. People have struggled to fund raise because of all this and there was an article yesterday in the New York Times that Livestrong had to respond to. It's a tricky situation and people would like black and white worlds where things are just pure and simple but I am not sure that's realistic. This cancer thing for me has been a lonely journey despite me being about as public as people get, a rare diagnosis to where to this day I've met no one else who had the same diagnosis it in the same place despite my activity within these communities. But despite some of those lonely moments, Livestrong pointed me to medical resources, perhaps ones I would have arrived at but more importantly they connected me to human ones that helped with some of the ways I've screwed up emotionally, trying to protect the people I have from something I can't control that has no known connection. And for that I will always be grateful.

Anyway, we all have different perspectives and room for them. The legal issues regarding custody and my cancer are still outstanding. I’ve offered my medical records and they aren’t taking them because we are stating this can only be used for this case and without even looking at them, they want me to give them blanket permission for all legal cases. I may have brain damage but I’m not going to be dumb enough to say here have this and use it to sue me or try to take my child at any time.

Last night I went to Livestrong young adult cancer survivors committee. It’s being organized by Livestrong and various hospitals. I learned a few things I didn’t know. Young adult cancer is on the rise  (that I knew) and it’s the only age group where survivor ship rates haven’t improved since the 70’s! Young kids cancers (as they should) have gotten attention and improve. Older cancers (more common and let’s be frank they’ve got  more money from a lifetime of work) have improved but young ones haven’t. Tonight I am going to Luke’s locker for the event where the picture here is attached, combining Hawktober, Luke’s Locker and Livestrong all places that I’m a big fan of and that combined to make that poster of me.

Livestrong is struggling right now at some level because of this and if you’ve gotten this far in this blog entry, I am impressed. And I ask for one thing and one thing only. You guys who read this regularly see that I reflect on music all the time and there is a biker who will donate $10 towards my Livestrong fundraising if you dedicate a song to me. Dedicate one that you would serenade with me or that you’d see me singing to that girl who makes me hesitate on my George Clooney lifestyle or that you’d love to do Kareoke with me. I once took a shot of cortisone because of an injury but the only steroid I’ve taken reduces brain swelling but damages athletic performance as do the anti seizure pills. But my performance enhancers are my songs and it would be my privilege to know that you dedicated one to me on this website. Details below.  

How it works:
· Jeff likes to ride his bike. Jeff is inspired by people’s stories. Jeff likes listening to music. Jeff makes a $10.00 donation to your fundraising account when you submit a story and song about someone past or present with cancer. 

Getting Started:
· Visit www.theroadrider.net and submit your information and song via the “Dedicate a Song” button

· Once Jeff receives your song and story he will make a $10.00 donation to you, and he will also make a donation to his efforts! It’s like a two for one deal!

· There is no limit to the number of songs and stories you can send!

· Include the link to your personal fundraising page so Jeff can make the donation http://laf.livestrong.org/site/TR/Endurance/Endurance?px=1004553&pg=personal&fr_id=1390

Sunday, January 13, 2013

Down to the Walk


The journey of cancer has been strange for me. The coincidences that have lined up make it seem like the narrative was almost meant to be written, the first time I came in first in my running group, the next day I have a seizure (I still think running fast is the cause of my brain cancer). The coincidences that line up with Livesrong races, brain cancer research races, collapsing in workouts, a job and spouse who weren’t very supportive when this all started and were then separated… keep making me look up that saying of Einstein on my wall, there are two ways to live life: one as if nothing is a miracle and one as if everything is… If I have to choose between the two, I’ll take the latter.

But at my doctor’s appointments, I still will always ask two questions am I fit to raise a kid (why I get through the day) and can I keep running (how I do it). I trust my team of doctors enough to where when they say no, I’ll give up each or both respectively. But until then, I am going to give it what I have. Yesterday, my schedule called me for a 20 mile run. There are days where running is hard enough even in perfection conditions. But yesterday was hot and humid and my stomach wasn’t thrilled so that or the anti seizure medications make me vomit (or maybe it’s all the chocolate I have). Ironically, I worry the most on the days I vomit on whether the vomiting means the drugs have left the system and I should go home and take more (all but one of the vomiting sessions have been in the evening when I’m about to retake the evening one anyway).  

Still, the weather was horrible yesterday, I was supposed to do a 20 mile run at a 7:08 pace and it was an incredibly warm day in January, in the high 60’s at the start where it kept getting warmer and for the first time ever by choice I took an easier route than the group and had to walk way too much. I didn’t keep the pace on my worst run in a couple of years but I got the 20 miles done. At the end of the run, my faith in humanity got shaken a bit. For all of these workouts that I have biked to or gotten rides to, I just leave a bag at the beginning of the workout with my wallet, my phone and a change of clothes. It’s always been there till Saturday. Ironically, what bothered me the most wasn’t the wallet or cash in there or even the clothes but the phone. I hate cell phones personally, never having been able to decide whether that or spandex in plus sizes were the worst invention ever in humanity. But part of the safety plan we’ve submitted in court documents is that Kiana knows how to call 911 and while I haven’t had my cell phone every second I’m with Kiana, I am proud of my batting average. Still, in that suspenders with your belt on, she uses an old phone of mine to play with and knows that (and thank whoever set up the system), that 911 calls work even on inactive phones.
More importantly though, from there was Kiana’s sixth birthday party. Her school has a policy of that if you invite people through the school you have to invite everyone and I was shocked and grateful at how many people RSVP’d yes. All the gifts that came from Christmas or her birthday were used for arts and crafts for her party. And all the pictures were taken of the activities and while of course people brought gifts, I tried to discourage that being the focus and focus more on the piƱata, the pin the nose on the lion, and the “cover charge” of making  where everyone who came had to put up a butterfly on a banner.

Still, the legal issues still are still outstanding and my attorney and I have decided to continue with the old phrase of you pick the hills you’re willing to die on and everything else is flexible and there should be very few hills you’re willing to die on. Kiana’s mother and I made some progress I hope in that she came over and we had no problems interacting at Kiana’s birthday party. We’ve offered them a legal waiver for my medical records regarding cancer, neuropsychological evaluations, and seizures. I don’t have to do that as my medical records are protected by law but I can see why her mother would want to see it if our roles were reversed. And frankly if we ever develop trust, I wish she would be the person I’d call because we’re always stuck together while we breathe because our connection has her own breath.  The offer hasn’t been accepted  because there was literally a counter offer that they wanted me to let her boyfriend have access to see my medical records. And of course, I am not going to hand documents I have legal protection for to someone who screwed me over in a variety of ways and who has no legal relationship to anyone I’m dealing with.

I made a mistake during the divorce proceedings last year based on all this. In Texas, the non custodial parent is supposed to cover the health insurance but assuming I’d keep signing up for really good insurance I signed her up on mine and shrugged off the suggestion that I should just follow Texas law. So we’re seeking that this end with her mother following Texas code and that all other custody issues on the table get removed. Unfortunately, in the world of health insurance, which ones I can get are a lot more complicated now in high risk pools and these issues because of preexisting conditions make me getting health insurance very expensive and also expensive to add a dependent.  Of course if I had infinite money I would do it but I don’t and Texas laws regarding my health conditions also keeps me from driving so there won’t be any sympathy from me about asking that Texas law be followed in regards to my daughter’s health insurance.

So we made that offer, follow Texas law and provide health insurance, have whatever doctor, attorney, judge and yourself look at my medical records and drop the custody battle and we can end this now. If they want to drag this out, well, I’m an endurance athlete. And there may come a day where I am not fit to parent but that day is not today and I hope not and pray it’s not anytime soon. I was asked how what my safety plan was without a phone and explaining the 911 capacity on an inactive phone well, I’ll quote myself directly:

I can't guarantee Kiana's safety every moment of the day; no one can. Presidents with secret service have gotten shot. God knows I'd do whatever I could to protect her from everything harmful but I can't.

So I had a phone stolen yesterday, I had a rough run where I walked more than I ever have, but Kiana had a great party and then we went to a church service. That’s a good day, a great day really. I am working on my playlist for the Austin marathon, only 5 weeks away. If the weather is like yesterday or like Boston, I won’t get anywhere near a PR but I’m going to give it all I had. But one of the songs on there is Steven Curtis Chapman Down to the Walk:

You can run with the big dogs 
You can fly with the eagles 
You can jump through all the hoops 
And climb the ladder to the top 
But when it all comes down 
You know it all comes down to the walk 



I’ve gotten to meet some great people through this journey but the best part is that I’ve gotten to know parts of my daughter, my friends, my family better. Yesterday, Kiana had a good party and I walked around after cleaning it up cause 6 year olds don’t clean up after themselves, And tomorrow I’ll walk my daughter to school. And no matter what my running times are, if those walks are what my life comes down to, I can live with that. 

Monday, January 7, 2013

Resolved

I’ve never quite understood the etymology of the word resolved or resolution. I am someone who makes every year 8 new year’s resolutions. I try to make some of them simple, some over ambitious, some somewhere in between… I’ve never achieved all 8. In 2012, I pulled off 6 of the 8. But how are these re-solutions. Some of them are things I’ve never solved, how can I solve them again?
Anyway, as 2013 started, I want to continue enjoying running. Someone from my running group said you know you created this image of a monster who puts off brain surgery to run a marathon and a few weeks later is out on the track again and then after he collapses is back out there 2 days later. So in 2013, I want to make sure I keep my love of running going about more than just races and trophies so while I had an invite for a commitment 5k (come on who tries to pursue the George Clooney lifestyle and wants to start the new year with commitment) and for an informal half marathon, I decided instead to do Jack and Adam’s annual underwear run. It was kind of a perfect way to set the tone that running can be fun… the route wasn’t mapped out, just had to check in at 3 places (fortunately it was all fairly easy to figure out) so it was a way to test spatial orientation. Also, it reminded me that the more clothes I wear the better I look. The route I took I did about a six minute pace for 4.6 miles. So it was good to start the New Year with a W.

I had struggled with coming up with 8 goals this year. I had 5 right away and got up to 7. But here are the 8. Other than the first, they aren’t in order of importance, more like a child day dreaming letting the consciousness flit from realities to what may end up being fantasies

      1. Keep putting Kiana first-This is the highest priorities. It is intriguing to compare it to last year which simply stated keep being a better dad.
      2. The second is about relationships. Some are incredibly specific and even I’m not that public but one of them was Kiana’s mother. I hope and dream and pray that we figure out how to coparent better still. But along those lines, I the kid who didn’t meet his dad till I was 15 thought that was a relationship I should improve as well. We talked longer on New Year’s Day than we had since before the cancer. In that relationship context, I said be open to being at least as romantic as you are hopeless.
      3. Break a 3 hour marathon-This was in 2012 as well and one of the 2 that didn’t happen
      4. Run a trail race-The one I was supposed to do didn’t pan out but I’ll get one in.
      5. Use the passport- This one may be more dream than reality but I remember traveling all over the world. A trip to Brazil got replaced for a trip to Duke… I don’t even know where my passport is anymore but I hope to find it and use it.
      6. In the obligation of the cured, raise money for the Duke 5k. I really do want to keep echoing that idea that to him who much is given much is expected
      7. Weigh the same or less (167.5) on December 31st, This was also a 2012 goal and it tells you about my eating habits that despite 2 marathons, 2 century bike rides and tons of exercise I literally weighed .5 lbs less on December 31st as I had on January 1st. Still, a win is a win.
8. Play trombone more. For a guy who sings all the time, I forget that I used to play a few instruments and was even in a brass quintet.

But I am still getting number one right. That trail race didn’t work out for a variety of reasons but Kiana will have 2 birthday things. One occurred on her birthday with some friends and one will be a big playing around time with some schoolmates this Saturday.


Long term goals are good even when each day is a big question mark since those who aim for nothing achieve it every time. I finally got around to doing some long neglected dental work the last couple of months today. Some of that was finances and not having dental insurance and some of it was why invest in teeth when you don’t think that much time you have left. I biked 45 miles round trip 3 times to get all this stuff done. We scheduled a tooth cleaning for a few days after the Austin marathon because while I hope it’s the one I break 3 hours in, either way, I’ll remember that this Livestrong one was one I put off brain surgery for and that 2 years later I am still capable of running well and that should make me smile and I might as well let that smile be as clean as possible.
 

Wednesday, January 2, 2013

With or Without You

My friend Chris is a digital guy. He’s building up his business on what he can do digitally in various ways but one of those ways was removing freckles or changing hair color etc. He took the picture that’s literally the center piece of a Livestrong poster, the centerpiece of a frame in my living room and the split point of life part I and II. That scar, the symbol of this cancer that took over my life, what changed it, what will statistically speaking, most likely be the cause of my death. He took that scar and he removed it digitally, like magic. And for the first time in over 2 years I saw a picture of me “without cancer.” It was strangely both comforting and discomforting… And kept putting me in one of those “what if” mentalities… what if all this hadn’t happened?
And while I cracked some jokes about how I wanted to keep the scar mostly because chicks dig bad ass scars… I realized I don’t want to take it back. And yes I wish I could clean up some of the mistakes but the past is written and the future is probably fairly predictable in some ways but I want to keep living in the moment, enjoying the now because that maybe all I have. I sat there on Christmas eve with cousins and family but for the first time without  my daughter, dreaming of a place called home even more than I usually do. I absorbed the distractions of watching the first time I’d ever seen my grandmother drink, taking a shot of tequila and drank some wine with her. I did an 18 mile run and a track workout over the break. After Kiana had spent Christmas with her mother, I spent a fair share of the break with her when my mother, who also works for the school system of another town, kidnapped her for a few days after her 6th birthday (I love Doctor Who and I’m starting to think there really is a time machine because has it really been 6 years?). Kiana’s new bed went up, and in one of those fortuitous but makes you feel guilty moments, I tried to get rid of the crib on craigslist for free and got a strongly worded email from a stranger about how it was a crib/daybed that had been recalled and took it back to target where something Kiana had managed to stay safe in from birth until she was 6 was returned and I got a couple of hundred dollars of store credit which I made easy come, easy go. I’ve taken these days to redecorate the house, since all Christmas gifts were household items or gift cards that I used for things around the house. With a nod to that Vincent and the Doctor episode, one of them was the painting where the ghost was removed and it now sits near the entrance to my house.
Still, since I am the guy whose last breakup is on youtube and who hasn’t had a girlfriend since high school isn’t ready to rush into any relationship of any sort but I am appreciating the connection with the girl who says she’s coming with me to my next appointment. This is the most time I’ve spent with any one adult in 2 years and has seen me recite pi to a ridiculous amount of digits from before the surgery and quote things from junior high and high school to great lengths has also seen me struggle to now remember a phone number and get excited over the fact I remembered a couple of items at HEB without having to look at my notes on my Iphone. So let’s just say that I finally watched 50/50 and the same day I watched friend for the end of the world. The first one is the right approach, the guy gets left during the cancer the movie ends with him on a date with another girl, with them going out and saying hey what’s next… the second also may have some truth in that they get a short time together but they are grateful for it. I am not leaving the George Clooney lifestyle anytime soon but let’s just say she got the question of what are you doing new year’s, new year’s eve and was the designated driver that night. Still, the guy who both duke and local doctors have asked when my hospital rooms in both the biopsy and the surgery were so crowded why I go to so many medical appointments alone… is scared of going to a doctor’s appointment in a few weeks both with and without her.
But as 2013 starts… as resolutions get made… as I make my home even more homely… well, I think if I had full control of the universe, even if it kills me in a few years, if I had to do it all over again, I’d sign up for the cancer and live life with the scars it’s come with because it’s made me a better person. Because those scars made it to where the people I hugged throughout all these holiday parties got hugged tighter and makes me bust my ass so that the house Kiana was born to continues to be her home.
People have kindly wished me a new year and said that I hope 2013 goes better for you. And I hope it does to and yes I woke up in an ambulance again and yes financially it’s been hell. And yes I need help with some things that a proud stubborn man doesn’t like help with. But my mom and daughter did their first races and I took home titles in every distance, the mile, the 5k, 10k, half marathon and marathon and 2 of those pushing a stroller! I put my daughter to bed most days in the room she was born in. I sent and received more Christmas cards than I ever have, using them as my Christmas “ornaments” and I think/hope that represents that I’ve continued to grow in both quantity and quality of relationships. And on new year’s eve at midnight, well I kissed a girl in front of people for the first time in a couple of years and I liked it. I kissed a girl just to try it out.  And if all of that’s what living with the scar made me appreciate more, I don’t want to live without it.