Finally Final

There hasn’t been much blogging lately… No great excuse other than I’ve been incredibly busy because school’s out and right now “retirement” is as good as it gets with Kiana and I have been having playdates at pool, at home and bowling and making puzzles. I’ve hosted a party for young cancer survivors and gone to some free concerts in the park with Kiana and friends. With all the media things people (some people I’d never met and others who I hadn’t talked to in years) have sent me some messages about how they feel bad for me for having cancer, for having had my wife leave in the middle of it, for getting fired for memory issues in court… well if you’re one of them, stop because I am one of the lucky ones. I may have cancer that ironically causes some add like syndromes on focus and memory but helped me focus on making memories with the most important people in life. I may take drugs that can hurt athletic performance but I’m getting some good times. And I may no longer be working and be on a long term insurance but I’m grateful that while it doesn’t pay the legal or medical bills, well it pays the day to day ones.  

Therefore, I declare that life has been very very good. The interviews are getting further apart and so are the medical appointments! And infinitely more importantly, about a year later, the custody challenge is over.  You better believe I recommend my doctors but I also recommend my attorney Laurie Nowlin (http://www.akinsnowlin.com/) who at the last hearing the judge ordered Kiana’s mother to pay a small fraction of my attorney’s fees (this isn’t done often unless judges believe the opposing party is being unreasonable). In some conversations and some emails, let’s say that some of the things we’ve said to each other out of frustration for the arguments they were making (ie he’s not fit to parent and he’s doing crazy things like endangering his daughter by running races with her, Kiana is better off in daycare than with her dad, this is literally in legal paperwork they submitted), anyway, that some of those arguments and some of the comments you say in there that even a guy who keeps a raw blog, let’s just say it’s good to have attorney client privilege. But today my attorney sent me an email saying that the appeal of the last hearing was done and showing why she’s more eloquent than I “everything final is finally final!” She helped me saved what I was fighting for and defeat the argument that I should go from being the primary parent to getting only supervised visits due to my medical condition and restriction. I got that first thing in the morning, shortly after meeting with the counseling I regularly do. I had a track meet plan for tonight and I still went but the guy who usually exercises as therapy well, Kiana and I enjoyed some chocolate chip cookies she had made that may not have been the best fuel for doing events in 100 degree weather…  But boy were they good fuel for happiness. I don’t recommend these as a regular diet J.

It’s been hot enough to where Kiana and I aren’t doing as much outdoor stuff as we usually do. Someone gave her an 8 puzzle piece and so we’ve been doing a puzzle a day during our just daddy/daughter time. There are still good friends who send me some of the medical advances that are being achieved in understanding the brain, I’m still raising money for brain cancer research. There are still people who want me to try this tea or this religion. But maybe a piece of the puzzle and getting through the puzzle of each day is all I can do for a while but hey again, I’ll take it.  And today, the puzzle that’s worried me the most, that I would lose custody in a complicated case of being an unemployed, cancerous father well it’s solved for now. And while there still hasn't been one... if everything goes well... September 2013 almost 3 years after this all started would be the first month without a legal or medical appointment related to cancer... 

And we went to the track meet where living up to my nickname of running slut, I did the 60 (dead  last), the 100 (pretty near dead last), the 400 (got whooped on) and the 1500 (got whooped on)… and realized that going to a track meet and signing up for every event when you did 5 kilometers of hill repeats the day before pushing a stroller…well it’s not going to get you personal bests. Kiana signed up for the 60, the 400 and the 100. She’s six years old and no matter how old she gets the main thing I want to encourage her to do is to exercise and enjoy doing it so that’s all I say at the start line and then I run along the side of the track encouraging her. She walked on none of them but on the very last race she was ahead of two boys (I hope she always outruns all of them)… she fell and I sprinted to the grass next to the track but she put her glasses back on and never looked to the side finished the last 30 yards running and then came crying into my arms and we cried together. But I’m never been more sure that princess is my kid. We Leons cry and hurt but we go till the end as best as we can. Right now she’s doing better than I have because she didn’t walk which is better than I can say about some of my marathon. I was signed up for a few more events after her fall but I just sat with her while she cried and then we went out for ice cream which in my book she earned both by running and by not giving up. That's part of the reason I love long distance races... trust me I watched and play team sports and was amazed at how kids younger than me and women older than me destroyed me tonight in speed. There's something very cool about it and it was impressive to see the sprint events tonight. But there's also something very cool about endurance events like the marathon... it's why it's always the closing event of the olympics, why the Boston marathon is the most spectated event on the east coast because all sports take physical capacity and some level of strategy and the will power to train but longer ones... well you gotta not be ready to give up even when exhausted, even when you fall. I have many many dreams still left in this damaged mind (tried to ask the disney marathon if they'd let me do it with a stroller but they said no) but the biggest one is certainly to get more opportunities to run next to my daughter, to cheer her races on.

But I’ll tell you  what… I assume and fear there will come a day where it’s time to realize that it’s the finish line, which while it won’t be as clear as it is on races, it’ll be time to hand over someone custody instead of fighting with them about it, cry some at the “finish line” and get some hugs.  But until then, until that’s finally final, I may fall (that happened twice and waking up in ambulances) and I will cry when I realize the finish line of this race is over but until then… you better believe that I’ll do what the lion cub showed tonight, you get up and until it’s finally final, you keep heading towards the finish line.  

What Dad Can't Do

I just had my best father’s day weekend ever by a mile, or maybe by a half marathon. I had agreed to shortly after the Beaumont race to do a virtual race (https://www.facebook.com/Fit4LifeRaceSeries)that will benefit the group that did counseling with Kiana, Wonders and Worries (http://www.wondersandworries.org/). I’d never done a virtual race but it's a way to get people to exercise in places where there aren't as many organized races. Because my friend Dave had offered to share his Galveston beach house with us on the weekend, I decided to do something I’d never done which was do a really long run on the beach. The simple truth is that I intended to do the 18 miles my scheduled called for on the beach but running in sand, with 80 degree weather, in high humidity by myself whooped me so I ran the half marathon that I was "virtually" committed to and jogged the last 2 miles and got in only 15… that is the most water I’ve ever drank on a long run and the most dehydrated I’d ever been. The next day I was more sore from a slow run than I have ever been from any road half I've ever done...

We went from there to an ultimate tournament where Kiana and I did some running together and I played some in one of the only two ultimate tournament I’ve never missed, the Texas Beach Ultimate Festival. Dave has a little boy and Kiana and him clicked instantly and they played with light sabers together and "drove the boat" together. That was actually the most I’ve ever seen her hanging out with someone of the opposite gender and I said it was fine for them to be friends till one of them went through puberty ;). I still haven't quite gotten her to convert into the idea of becoming a nun and interestingly enough when you ask her what to be when she grows up the answer on careers have shifted but consistently she says she wants to be a mommy.

And there in the ultimate community, the community I am and was part of for years long before I'd run a marathon, I helped put together the bracket in between slips out to the beach with Kiana. There were the people there who 2.5 years ago put together a tournament where most of the profits went to Livestrong but some went to my medical bills… There were people who felt the need to say my mom/dad loves you because of the news coverage. There were people who notice the deficits and others who the more beer they drink the worse/better the jokes about my brain cancer got. There were strangers there that just wanted me to make the bracket go better for the team. But mostly there were just friends there who it was good to see them in what had been too long since the last time.

Before I left for the weekend, Kiana and I spent Friday making an arts and crafts purse. She put together one side of it for her with a K and all daytime decorational stuff and the other side of it together with a d for daddy and all night stuff…  So with painted toe nails… and now a nighttime purse, I think that made me be officially out of man cards. I am not quite sure whether more girls or guys pointed out my toenails... you know I've done this many times but usually Kiana picks pink which doesn't stand out as much. Her picking out my favorite color this time, royal blue has made them scream for attention...

Then on father’s day itself… I was just watching her sleep realizing she's worth every ounce of holding some things back and she woke up. She wanted to get a dress on that she had packed because it was also my favorite color (I hope her sensitivity to me will be something she holds on to and share with a lot of people and care always). The anti seizure medication I take everyday I had connected with some things around her morning and evening schedule as reminder. These have become a little more “relaxed” since school let out and so now I’ve set up an alarm that rings on the ipad and my phone and …so she’s become used to it popping up on the ipad if she’s playing with it. But somehow since it’s become part of her routine that it interrupts any games she's playing she asks even when she’s not on the ipad. So without a shrug or a care, moments after waking up on her time scale (definitely not a morning girl) she said, “where’s my bag so I can put on my dress, have you taken your pills yet and happy father’s day.” Ridiculously good summary of my life…

And now at six she had managed to make a father’s day gift at school that she had (with help) hidden until father’s day. There was a portrait of me… and some really nice messages in a story book she had made one in which I was wearing a Livestrong short. It talked about my favorite foods, about how someone lives with us to help us, about how she thinks that while at school “I think he playz on his computer and 2 phone calls," that I look handsome with a fancy shoes and tie, that I make sure she’s always taken care of, when she’s hurt I help heal her and that when we go to Costco I buy her ice cream. There was a whole description of a variety of aspects of life but she put that the hardest thing I have to deal with is my brain caincer…

But there was a then a little card that said “My dad can run, draw, read but what my can’t do is wear my high heels with little white shiny bows.” You gotta love that… I’ve painted my nails, I’ve carried a purse… I am frustrated by my lack of confidence in many areas of my life, especially those that we associate with being "manly". I wonder when/if I should get back to work, when/if I’ll die of this brain cancer and why can’t I have any certainty of it, when/if these legal issues with her mother will settle and why can’t she just let the legal process have a break,  when/if I’ll ever be allowed to drive again, when/if I'll ever forget to take my medication (which she reminds me of!)... but despite all that, the one thing that the center of the universe thinks I can’t do… is wear high heels. What’s the equivalent of size 10 men’s size for high heels? If that’s all it takes to show this little girl that I can do anything to make her happy, let me know what color you think I'd make them look good in. 

Someone Today

A wise woman once told me children grow up to be adults and that’s a sad thing. I was 21 at the time, just finally a complete adult in every way but renting a car so I thought it was a dumb dumb thought since I had finally arrived at the freedom of adulthood. But as summer has begun and Kiana and I are just playing… I am fully coming to grasp that there is a beauty and a wisdom to the approach of enjoying each and all stages of life...

Often my email signature is a quote that currently is hitting home and it currently quotes Tauscher (though I changed the he to she for obvious reasons), “We worry about what a child will become tomorrow and forget that she is someone today.” Childhood is ridiculously fun for most of us because of its simplicity. Even people like me who grow up poor and in a rough neighborhood find a joy in things like tag and hide and seek and for me and many other children, above all running. Sure eventually, childhood gets more complicated as we go through puberty and realize a variety of things and then there’s career options and this and that… and those are great and confusing stages of life… but I’m trying to teach Kiana what I’m trying to learn myself: I’m not nearly as good at long term planning as I used to be,  today in some ways always matters more.

I get nervous when I get invited to speak at various places because while I pepper in some of the inappropriate humor from me and my friends about this brain cancer story…  humor being one of my many coping mechanisms… but I don’t know that I have a great message. I make the joke about how the seizure came literally the day after the first time I came in first in the running group (running fast causes brain cancer), the joke about when they put parts of my brain to sleep at a time chemicals they ran from my groin to my brain (proving what we’ve always known man’s groins and brains are connected and only take a few seconds to communicate), the I’m going to give you a piece of my mind joke that I told the brain surgeons… There’s obviously serious worrisome parts and to this day the only marathon I ever qualified for Boston was the one where it was a few days before brain surgery because turns out if you think it’s your last marathon you run as fucking fast as you can…

The jokes still continue with the executors of my will saying that he bought a house on top of a hill that way it’s harder for me to get there because it’s tough to bike that steep and the other executor saying that it’s weird that people acknowledge they have even met me.  It’s good to have friends that blow you off even as the slow news week continues (http://running.competitor.com/2013/06/news/enjoying-the-ride_75176#post-comments) . But while I love and share Livestrong’s attitude that we’re fighting cancer, my biggest focus is the same as most children I’ve ever met, babysat and the one I’m trying to raise, you just hang out and live with the people you love. I mean even the world’s greatest religions I hope aren’t preaching extending life just for the sake of living… it’s for the sake of living right. I fight and deal with the medical issues and bills (relieved to say that all arguments about past ones got settled a few days ago!) because well, I am not trying to avoid dying just trying to keep living.

There are of course stark reminders of reality of what I assume and bet will come unfortunately . The guy who owned me at the Angels Among Us 5K is struggling with the brain cancer drugs he’s on to where right now he’s not really running and it’s been less than 2 months since he owned me and he’s been aware of his cancer less than six months (I trust and pray he'll kick it's ass)… the girl who had brain cancer and had the biggest team for the Livestrong marathon passed away within the last month and she was much younger than me… one of the guys from the cancer and transitions class about my age I attended whose cancer was gone died less than a month ago… One of the girls from the young and strong club’s group who is about a decade younger than me has brain surgery Friday and asked if we could have a meal together, she also has seizures and the couple of hours together we shared some point. With each of these, it's nice and scary to know there was someone out there who got a little bit more of you than most people. Each of these mess with me significantly though for some reason the guy who beat me at Duke made me cry for quite a while. None of our tomorrow’s  are promised but statistically speaking, like poker, there are those of us whose odds are dramatically different than each others but again none of us have our tomorrow promised.

So Kiana and I have started summer great by going swimming, and arts and crafts making and singing and to the playground.  We’re going to a free lawn concert tonight, took Kiana to first Thursday where some great arts and crafts were on sale, watched triathlons and gotten whooped on in many athletic events so I commend that the human spirit is very much about getting better at these as a whole and about getting to our personal best individually. (By the way, my brain may not be all it used to be but my daughter finished kindergarten accepted into the GT program and with a "4.0")Training in the heat is kicking my ass but the guy who has memory problems is quickly remembering why marathon training doesn’t usually happen during summer, why they invented air conditioning and I’ve never appreciated ice cream more. (With that said, since the monkey bars whooped me in the Spartan race I tried to do them today on the playground and Kiana got further than I did and tried to comfort my frustration by saying, it’s okay daddy, it’s harder for you because you’re a lot heavier).


Invitations to some things have dramatically slowed down but have still kept coming in and on the ones I have Kiana unless I can participate with her I say no (that's been tough on a couple of them) but otherwise it's a yes. Yeah the running slut thing continues... But I keep thinking that Kiana and I have a great relationship for many reasons but one of them is just simply time with people creates greater bonding if the connection exists. The honest truth I only ever intended to do one marathon and it was with Kiana's mother. It was a dumb romantic gesture that we did it on Valentine's day. We did exactly zero of the workouts together and saw each other where I waited for her for the last .2 miles of her race after I finished mine. No wonder we broke up. Big days like marathons and anniversaries and holidays are important but really irrelevantly stupid if you aren't getting the day to day things right so I am trying harder than I ever have on those. There are people who think it's weird I'm so focused when I'm not dying in a couple of months or what have you... I think it's weird that they are putting off great things for another day... The ending of a book or a life or movie or a song or a concert may greatly affect your view of it but I don't think there are many times where people go and say the last part was great but the rest was ho hum so I'm glad I got to be part of it. I'd rather go to a great concert/movie/tournament/life/book with a great journey and an okay/bad end than vice versa. I'm hoping I can figure out a way to get a good path and a good end. 

And the great Olympians and the Thomas Edison’s of the world and the creators of facebook and the internet are just feeding the beauty of humanity, creativity to know more out inner self, our outer world and to use both to enjoy life and connect better… and while I still don’t quite know what to say about being called inspiring I do know that the stuff I’m being commended for, exercising and loving my daughter… well it’s not brain surgery. I will always worry about my daughter’s tomorrow but there’s nothing I’m more proud of than that I haven't forgotten that she is someone today. 

Your Will Be Done

I recently updated my will to reflect the scholarship that winning the gusher marathon got Kiana (http://www.donationto.com/Sports-Society-Fund-for-Iram-Leon)… The simple truth is that probably anyone with kids should have a will at least because of the legalese of property etc. With that said I never had one until the cancer stuff started… And at the time I just downloaded some forms because well my finances were going towards direct medical bils not sideways ones but this time around an attorney was kind enough to give me better guidance than that (http://www.texaswillsandtrustslaw.com/). The will that stood until a few days ago simple left everything to Kiana to receive at age 18. I am not worth much but I am in a house with some equity and have a fairly minimal term life insurance that I wanted to make sure she received with the least hassle. She pointed out it’s probably best to establish a trust and some caveats and so some modifications were made like that Kiana receives 40% of whatever there is at college graduation or at when she turns 25 (here’s hoping she uses that scholarship fund wisely) and the rest when she turns 30. Even the most responsible among us, I imagine if were handed $100 or $10K at age 18, it probably wouldn’t make 19 but it took someone with more experience to help me be aware of that.

Some other documents were put into place that were not, again because of wiser guidance. There now exists a standing power of attorney. When you’ve waken up in an ambulance a couple of times, when you take pills  twice a day to prevent that, it was a standing power one rather than one in case of medical emergency because that apparently (no pun intended) is a gray area where the doctor has to decide if you’re not mentally fit and the one we set up they have it now whether or not a doctor thinks its neccessary. Trust me… that takes trust. Other realities that somehow I’d neglected to put into place where pointed out… are there particular items that you want to go to certain people… I don’t own much but there were a few people who I thought would appreciate some sentimental tidbits from running, world travel, ultimate etc… who gets your dog (it’s going to the “Bon Jovi” girl, a nickname she’s not sure she likes).

A question on there was what I would like done with my remains… and this is literally in legal papers now, I asked that I be cremated and flushed down the toilet.  There will, of course, be those who think this is less than appropriate; there are no consequences or binding things to this and the executor of my will Todd has already let me know that when the time comes, and he always says decades from now, that he will be ignoring that part. But this is simply because I don’t care about my final resting place… I’ve never cared about resting anyway. People asked why I'm not being thrown on a race course or buried in Mexico and I've had enough friends who do things like that and I find the romance comforts them and their loved ones. I have full respect for that and to each his but I don’t romanticize death, never have and hope I never will. Look how much I struggle with romantic moments in life. My brain will be donated to science and perhaps my organs will be donated as well (there are questions about whether or not medicine would take them due to the cancer diagnosis, typically they wouldn’t but this type of cancer doesn’t metastasize outside the brain and spine). But other things are in place like there is a very very short window of keeping me on life support. I know, have met, respect and at some level understand from having watched my great grandmother lie in bed for the last few years of her life that we have a hard time letting go… but I am not going that way… I am not going being a burden and if takes technology to keep me breathing for longer than 72 hours… well it’s time to stop breathing.

But as that document was prepared… I got invited to speak at the Pocatello marathon (http://www.pocatellomarathon.com/index.php?page=race-info). They asked if I had a book I would like to show at the expo. I’ve gotten the book question a few times and I suppose even with this blog (which is obviously mostly whining) the book would be, I love my daughter, I love to run, it’s unfortunate that it took brain cancer for me to get better focus on both of those. The end. But this pocatello race unlike anything I’ve done before because it’s a huge elevation drop and I’ve been in sprint mode so this will literally be the shortest time I’ve ever trained for a marathon and with Kiana being out of school for the summer… let’s just say that appropriately enough my 8^th marathon will have me intimidated and excited. That tends to be my life mantra.

But Kiana’s school has had so many functions in the last two weeks of school, watermelon and splash day (I got soaked), chalk and autograph day (I signed it by the only way I’m known in that room, Kiana’s dad), Boone’s got talent day (teachers danced on stage and I couldn’t decide if I was more sad or happy that I’d never seen my teachers from elementary do something like that). There was a dad function day where, like she does often, Kiana put a flower in my ear. Several dads looked at me weird and it took me a while to realize that my normal isn’t theirs… Someone said I was showing them how to live and I’m certainly not trying to do that, I’m just trying to get a little girl to keep smiling and if a flower in my head does it, what does that harm? I mean school gets out tomorrow (has it literally already been a school year) and we have a pedicure scheduled for Friday.  So flowers in my hair and my toenails done in a week just to get a six year old to smile… a friend of mine’s daughter just had her sweet sixteen. I hope I’m still standing then.

I finally used the frequent flyer miles from all the trips to Duke to go camping in that exotic land of Canada. It was a Frisbee tournament where I realized that no matter if you win a marathon or a 5k… you can be completely out of shape for other things, even things you used to do a lot more often. It was a goofy tournament, like a color run or the beer mile that I’ve done. It was the first time that it was just a random trip. There have been trips everytime I’ve gone to Duke just to make the trip easier but this was just a trip for a sporting event. I am always one of those people who volunteer when they offer up money to get bumped and this time I couldn’t help but think if only my medical situation was like this flight… I can volunteer to arrive later at my final destination and get paid for it, that would be a dream world J. Let’s just say between vouchers, this Toronto trip and the Pocatello one, the kid who can’t drive is glad that I’ll be getting some flights in. The camping one in another country where there was no cell phone, no facebook, no internet, made me remember why those were invented but also glad to take a break from them.

No new news on this de novo hearing with Kiana’s mother… And I’m going to continue the attitude I’ve had since I got fired and she filed for custody… while that’s pending, I’m not even going to pretend to look for work right now. I keep helping at things but at the end of the day if everything goes right with these legal matters and with cancer and all I did was hang out with Kiana some more… or if everything goes wrong and a seizure or cancer kills me soon or a judge really does grant that I should only have supervised visits… well if all I did was swallow my pride and hang out with my kid some more, to me that’s a win/win. There was a dad who at one of these end of year functions went up to a teacher and said it’s nice to finally meet you to her. We talked after and he felt guilty about how little he saw his child but he said with his job, it was a financial necessity… The other day as a friend was going to work after a meal with me, I said, “Oh that’s tough that you gotta go to work” and they responded with, “You know you’re jealous.” And I was but this insurance I live off as a financial necessity and the cancer which comes with some other financial and other realities… well let me refer you back to that if everything goes right and all I did was hang out with my kid some more or if everything goes wrong and all I did was hang out with my kid some more, to me, that's a win/win. 

Last summer, I wasn’t working, having gotten fired in May (showing you how dumb I am/what I’m made of, I was given multiple chances to resign but that’s just not my style). Legal proceedings were just starting and I was trying to figure out Cobra, health realities etc. This summer, some of those things still aren’t settled but the job thing for at least till 2014 is full time dad. And I hope I can earn my keep. 

The Life You Imagined

I recently saw a Thoreau quote given to me on an 18^th birthday card: “Go confidently in the direction of your dreams. Live the life you’ve imagined.” At 18, I thought it was kind of a silly card to give me. Of course, I was going to go in the direction of my dreams, I was going on a full scholarship to a college in Napa Valley, I was dating a cute girl… what could possibly go wrong? If you’d asked me to imagine my life at almost 33, I’d be doing some great fulfilling career, be contributing there and elsewhere, have some good hobbies and have lots of good friends.

Well… fast forward 15 years… and my life is certainly not what I would have imagined. Between Wednesday and Thursday, I received emails from an attorney, a notice of another legal setting in August, I got  a call from my neuro oncologists office about rescheduling my summer follow up because my doctor was on call. I biked 37 miles on one of those days between two legal places and home to get things notarized and certified copies and set up a will signing. But then again, I also biked just as many miles to volunteer places on Thursday and went on the Austin marathon’s trash run on Wednesday and picked up tons of recycling in ditches. (By the way the google maps app is awesome on a bike because it tells you voice if you’re making a wrong turn… I know that sounds a little pathetic but when you get lost a lot… I start to love technology)

All I ever wanted to at 18 and at 32 t to do was to contribute to both those close to me and to those less fortunate than me but I wanted a lot more independence chemically, financially and otherwise than I have. I have limited income and it comes from an insurance and somehow being raised in a culture where it’s my job to have a job that’s the primary breadwinner, this has been tough. At the intellectual level I understand the position both the insurance that’s paying the bill and the medical kind I can’t get because of pre existing condition.  Logic doesn’t make blows to the self-esteem easier.  

And if that doesn’t mess with my self-esteem I follow some forums on brain tumors both cancerous and some about epilepsy issues. One of them had a study this week about hypergraphia (http://en.wikipedia.org/wiki/Hypergraphia) about how people with epilepsy have a compulsion to write and me, a  guy who has called this blog his therapy wondered if even his therapy was a symptom of his disease. (Hypersexuality was in the study too for those who want to make a George Clooney joke).

But in the middle of wondering if not having the life I imagined, I received a letter from one of the authors of one of the articles about that marathon win. I’ve asked all the ones who actually interviewed me to send me an autographed copy for a scrapbook I’m making for Kiana. They have all done so and sent a nice note but this one came with a really long one that made me hope that maybe I am still contributing something http://www.nj.com/ledger-dalessandro/index.ssf/2013/03/marathoner_with_brain_cancer_inspires_wins.html?

And then I was tagged in the blog by Alexander Nichols http://liveepicbeepic.com/texas-spartan-race-with-iram-leon/, the guy who kicked my ass and guided me through the first day of Spartan race… And he was wrong on me not needing much guidance on Sunday, I got lost twice but the volunteers called me back.

But still, there are those who are fortunate enough to pull off the life they imagined. I am not one of them but I’m trying/accepting the changes. It’s what you have to do unless you’re incredibly fortunate, just to learn to roll with the punches and as often as you can sometimes with logic and othertimes with emotion, to punch back. I have made my career as best as I know how for now as full time dad and volunteer. It’s tiny little things sometimes that you learn to reimagine. Kiana’s school picnic got cancelled because of heavy and so instead of that we have been making a puzzle all weekend. This was the first weekend that we didn’t have a race since the Marathon win (coincidentally I ran the longest I’ve ran since then, 15 miles and it turns out going from Marathon mode to sprint mode and back… hurts. Actually I was planning on doing 15 but got lost and was 2 miles away from where I wanted to be when the watch said 15 so I walked/jogged most of the last two and suddenly I wished phones didn’t get ruined with moisture. Actually I forgot my ipod yesterday as well and running during the rain reminds you of the rawness of when humans literally ran for survival, for the joy and necessity of one foot in front of the other). Some of those races were already scheduled but some were just gifts because of that. But this weekend we went to an Autism Speaks 8K where Kiana enthusiastically handed out water to runners at the finish line but at the start line she got to see that some people only had the option of being in a stroller for a race. A few people mentioned I’d have to a stroller that big to keep running with Kiana but that won’t happen. I’ll never do it once she gets tired of it and I’ll slow down to run next to her until I can’t keep up since I don’t want her ever slowing down for me.

Thoreau wrote his thoughts in the 1800’s but two of the most fun races I’ve done recently have been Greek Themed… the Spartan race and the marathons. So perhaps, it’s time to go back a little but farther to when

Socrates said “The Unexamined life is not worth living.” So for as long as some of the brain still works, whether hypergraphia is a symptom or a therapy or both, I want to keep examining and imagining my life and living it. And like being in shape, a well imagined and well examined life, doesn’t arrive but rather is maintained by continued effort. So… here’s to re-imagination and re-examination and more importantly to life.

 

Know at the Finish Line

Over the weekend, I got to try something new. I had been given a gift to attend a Spartan race and in the most in-the-red month I’ve ever had due to normal, legal and medical bills, it was a pretty awesome distraction. If you’ve never heard of a Spartan race (sorry for the enthusiasts, http://www.spartanrace.com/), I never had it’s a mix of a cross country race with obstacles. I did a color run last year which was just slashing through mud because of the weather and getting color splashed on you. I’ve done suburban races where it’s figuring out where you’re supposed to be. There are some that have other challenges where screwing up can get you something like an electric shock. This was all physical obstacles from climbing over a wall to going under barbed wire to shooting a javelin to doing a balance beam to rolling in mud. Many of them were things I’d not done since Junior high or high school like climbing a rope, a huge percentage were things I’d never done period… I didn’t realize this when I got on the course that you only had one shot at it or else you had to do 30 burpees… I’d never done a burpee. I did 120 in about an hour. While I recommend the Spartan race, I can’t say that I recommend burpees. Still as soon as I finished in what I guess was a respectable time, I started analyzing it trying to figure out if I could do it again. I asked one of the organizers if I could do it again and they said not that same day but I could come back the next day and do it in the elite wave. I took 15 minutes off on the second day, and did only 30 burpees which means I only screwed up one event.  Still, the tiredness from the first day challenges and the burpees, made me wish I’d had Saturday’s legs and Sunday’s knowledge…  both contributed greatly to Monday’s happiness, soreness, cuts and bruises… Saturday it was a puzzle and a challenge, Sunday it was just a challenge.  I didn’t realize that even those who do it regularly don’t know the distance till they get to the start line and don’t know when or where the obstacles are until you meet them… feels a lot like life period and certainly like my own. The second day I got a 55 minute time and apparently beat a good percentage of those in the elite wave. The brain may not be all it was but I want to continue to make death work to beat me across the finish line.

And then to my surprise and yet not at all surprising, Kiana’s mother’s new attorney had requested a de novo hearing, a requesting for a new hearing asking that some of the previous things the judge had ordered be shifted… I don’t know what to do with all that stuff. There are times I wonder if I’m the crazy one but then I realize that there are doctors and friends willing to testify on my behalf and they literally had zero (0!) people on their witness list… I mean if you can’t find any one to back you up besides your significant other, isn’t that a clue. Since November of 2010, there has not been one, not one month without a medical or legal procedure due to this cancer. I was hoping June would be but now that looks less than likely because of this de novo requests. I’m an endurance athlete and I’m exhausted. And it’s not just by the procedures but it’s because I get emails like this from Kiana’s mother in response to asking that she not swear in emails:

“Don't send me 'thank you for dropping off Kianas'. They are uneccessary, and mean nothing coming from you when we both know that I am the one doing all the driving for Kiana and making all of the sacrifices for her.

Don't email me about bullshit homework for a kindergartner: you doing most of those assingments with her is probably the most interactive you two get. Those activities are enrichment and reinforcement and it is because of the things that I exposed her to when she was young, the foundational skills that I taught her, and the learning that I procured for her when she was younger taht she is the intelligent, articulate, empathic girl that she is today so don't tell me shit about homework. I enrich her life every day that is with me and I don't need a camera or free swag to do it or a structured race.

Do not contact me or text me or email me unless you are dying.”

So call it cowardly but even as an endurance athlete, a guy who has ran marathons 3 weeks apart and Spartan races back to back days, in regards to all this with her mother, I am exhausted right now. I’ve literally decided that for every email I receive from her my response will be “I’ve received your email… while legal issues are pending please communicate through attorneys.” I mean that’s what attorneys are for… it’s like I used to try to read my own MRI”s and realized I had no clue what they said. I hope her mother and I are able to get somewhere at some point… But I just don’t see how when someone who leaves you at the weakest point in your life, keeps trying to take things from you even as you’re trying to focus on the one thing you’ve got left together, your child. The attorney helping me out thinks this is all fairly ridiculous as do I but I suppose like some of my deficits and the cancer in my brain you learn to accept some unpredictability as normal.

The Spartan Race logo is “You’ll know at the finish line.” I don’t know when or where the finish line will be in the race of life…  But at the end of the Spartan I went straight at  the guys who would take swings at you and through the course, I cheered both those in front and behind me. At the Spartan race and in this thing I’ve called life Part I and Part II, I think I’m getting more things right in Part II no matter when the finish line comes.

With things like the shootings recently and Boston and now the tornado in Oklahoma and when I was at a funeral recently, I can’t shake the notion that death is always meaningless. There are degrees to that and ways we can serve better purposes in death. But life, life doesn’t have to be. Last Friday was Livestrong day...Kiana wore her shirt and was nice enough to pose to show that we are still strong despite all but I am still trying to develop new strength. (And so on Monday I went to a boot camp for the first time ever. I probably won't be doing it that structured but I do need to do more upper body stuff). Still, the only way I'll be comfortable that I’ll know at the finish line is because you gave it what you had throughout the course despite unknowns and also because getting to the finish line was never non negotiable. I bought a tiny rock yesterday that just popped out at me as I was walking around. It just had hope carved into it, I hope I have it carved into me and that it’s something that we all know I had at the finish line

.

Full Time, Part Time

(If you read this blog for giggles or happiness, this might be a good entry to skip. None of them are written for that, they are written so that I can go back and focus on my memories as they happened).

Unfortunately, my memory isn’t what it used to be but one part that’s never blinked is how well I remember dates. November 5^th, 2010. March 2011, the date of the surgery, March 2012 the entrance to Duke, March 2013, the day I won a marathon pushing a stroller. I remember my wedding anniversary still and believe it or not out of simple self awareness filled the week of the divorce with tons of activities and skipped court because I didn’t want to remember the divorce date; I don’t. But I do remember today’s date, May 15, 2013 exactly 1 year since when I got fired for a history of “poor judgment” and mistakes on the stand, in a job I’d never once had a bad review. If you want to read the entry about that (http://pickingupahitchhiker.blogspot.com/2012/05/different-job.html)...

I spent time looking for work and in that process noticed and acknowledged deficits that I’d lived in denial to or from myself. Encouraged by friends and a medical professional, I then filed a private long term insurance claim that my doctors felt I qualified for and I am incredibly grateful that my insurance agreed and approved it. Having worked full time since I was 14, working at the job I thought I’d retire from, I hated doing that but those of us who grew up poor realize that sometimes you have to pay the bills and those of us educated through rough lessons about insurance realize that some things in life are use it or lose it and that pre existing conditions make you uninsurable in this country for many things  Even Obamacare, which I hope will allow me to have health insurance after January somehow doesn’t affect lots of other insurance like short term or long term ones like the ones I’m on. I’ve spent some time trying to negotiate with the billing companies for both local care and Duke care and they’ve all been paid as best as I can but the simple truth is that one of those places literally makes more money from me now than they did when I had insurance (ie my out of pocket costs are more than my copay and what the insurance used to reimburse them combine). People have pointed out they can’t deny me care but my doctors are brilliant and neuro specialists are the highest paid in the medical profession for obvious reasons so I want to pay them… I just have a hard time imagining that more money being made now for a patient that was established is just and fair. You also try not to complain because you don’t want your doctors to hear from their bosses that they are not the ones you get to continue see because these were hand chosen because while there’s times I thought my deficits were somehow theirs not cancer’s fault, my doctors are fucking awesome.  (Every once in a while I reference doctor who in here and the current one wears bow ties because bow ties are cool and so does my local neuro oncologist… if you want to see the piece he came out in with Comcast watch how well he rocks a bowtie here: http://www.csnhouston.com/video_content_type/daughter-helps-runner-battle-brain-cancer) . Actually what I like best about that piece is that it’s focused on what I’m focused on, running is a part of the equation of Kiana and I and while it generates attention, reading to her, walking with her to school is just if not infinitely more important.  

But I made a decision to try to avoid being cancer (http://pickingupahitchhiker.blogspot.com/2012/05/avoiding-cancer.html) and I hope I’ve done okay with that. I didn’t want to be someone who sucked resources like insurance without giving back. I made being a dad my full time career, an expensive job for those months of waiting time during the insurance, but a few months later the child started school so 8-2 got a little more complicated. I never started working out harder then or now, somehow that felt like cheating. I started volunteering in every place that would have me and that I still felt mentally adequate. This has created some very cool experiences like yesterday I got to help out a Ph.D student with their project. They are creating cultures with different biological ideas. I got to flip over the pools that the culture had grown in but got to hear about someone who was still brilliant. I’ve helped out with jobs that are much simpler than what I went college with two degrees for (let me be clear, these jobs are no less important than what I went to college for but they regularly come with less pay and worse hours than what my insurance is kind enough to provide. If swallowing my pride means taking insurance and getting time with my kid rather than be the world’s greatest janitor, I’ll swallow my pride.  The legal issues still haven’t been settled since her mother refused to sign things and until they are since their request was to go from primary caregiver to supervised visits, I’m going to hang out with my kid and I’ll take anybody’s judgement about that. If that ever happens where I’m just allowed to be a guest in my daughter’s life or if I’m still standing when that time comes, as all good parents eventually love seeing the birds fly out of the nest, you better believe I will be a kick ass janitor if someone will have me).

The running a marathon and winning it with a stroller has come up with pleasant surprises. I now have a race far down the calendar officially scheduled. Appropriately enough it’s a half marathon in Beaumont Texas in November http://register.iaapweb.com/search/event.aspx?id=20532 and so it’s the next half that’s officially on the calendar with Kiana in tow. We’ll see how much she grows between now and then. But the scholarship account was opened and that’s made breathing a little easier. I’ve continued to do some races on my own and races have also been kind enough to give me entries if I volunteer or speak or some just period which has let me keep doing more races than I would have imagined. I assume this will end but like Kiana does, I’m enjoying the ride. I ran a track meet Saturday and last year I was so proud of breaking a 5 minute mile and got exactly 5:00.0 this year but if all I’ve lost is a step while marathon training I’ll take it. I’m trying to do new ones, like that stair climb which I could have done faster but it was my first one. I am about to do my first ever Spartan race since they gave me and a helpful friend an entry. I am incredibly intimidated and excited about this race. And

The “Bon Jovi” girl that people keep asking about well, things are going well. We’d been friends for years and I think we’ll be in each other’s lives for a long time. Hell, my cousin might be moving out this summer and I think I’ll always have a back up living with me as long as Kiana does and she’s certainly on the short list for many reasons. Since long before this we were/are close friends before she’s noticed the deficits more than anyone has and recognizes both the guy before and the guy after. But the benefits of full time friendship is the certain path we’re taking because as damaged as I am mentally and emotionally, I am not sure I’m able to provide anything for her or anyone else that’s much simple than Lady Gaga’s bad romance and this relationship will continue as a very good friendship. 

3 years ago… I thought I had my life all mapped out full time till retirement and then I woke up in ambulance and found I had cancer, then lost my wife of 10 years and my job of 7 years. But still, the thoughts that I thought would be there for the full of my life left during the worst part. And while it’s not all I thought or hoped it would be, today I sit with a counselor, and attend a young adult cancer survivor’s meeting I helped organize, exercise, have lunch and do homework with the coolest kid the world has ever known… I wish I could take back some of the parts I got wrong because they hurt other people but otherwise, and while people think the media stuff is cool and no one wants to trade lives, I can honestly say that at least today, and one day at a time is the best I can do, I’ll take the full of my life.

Desperado

So yesterday was the 5th legal setting where my health, Kiana's health insurance and custody in regards to that were discussed. I don't know what to say about Kiana's mother other than I don't get it... we got to court and she had a brand new attorney in what was supposed to be the close of all this. The other attorney has been through that emergency hearing and gotten nowhere, that the child is better off in daycare hearing and gotten nowhere and that mediation where it felt like I gave them 90% of what they wanted. Then I'd gotten an email from Kiana's mother that she was going to appeal the mediation... I didn't understand that since mediation  unless there is fraudulent information, are not really up for appeal. Maybe this new attorney thinks she can undo/redo/better do the finish but that's not typical. I kept looking at her through the hearing and showing the disparity, disconnection the attorney kept not looking back but in the end when we finally made eye contact  while she was talking about the safety risks of my health condition, she mouthed sorry and I said it's fine. I mean... what can I say if it's her job?

What should have been a 15 minute hearing turned into two hours in what seemed to be stuck into legal minutae. There were a couple of semi substantive things... they wanted copies of my MRI's within 7 days instead of annual which the guy who has a public blog about his health condition had no problem saying yes. I mean let me be as frank as possible. I don't get to health appointments to fight cancer anymore. I also don't take every desperate suggested recommendation because if I did I'd be dead in no time I imagine. This is my monitoring it and now that I don't have health insurance if there comes a time where it's fight or leave my daughter broke because fighting brain cancer is too expensive, well, I'll sign the futile care document, sign over custody, get my things in order and head to the Grand Canyon. I trust my doctors know what they're doing and I have a lot of lack of self confidence when most days, including the ones where I throw up and the ones where I woke up in ambulances and the ones where focal seizures occurs, I feel fine not too long before those things happen. I go to doctors not too fight but because smarter people than me can monitor my brain which was my key to doing well and now is an organ I just don't trust that much.

In court, there was a short argument about the fact that Kiana would be with me for both Thanksgiving and Christmas this year. If you'd read far back enough, you know that Kiana's mother told me she was leaving the day I got back from Duke and would be gone one night in the middle of the night while someone was staying at the house, when I was still on multiple drugs, before I was cleared to drive or return to work. She would file for divorce very quickly when the last thing I'd done before going to Duke was take her to the Caribbean... just in case. The divorce would be finalized before I'd even returned to Duke for follow up. I had tried to save the marriage but when there was no fight for custody then... well I gave up so it was actually an agreed divorce. I was against the divorce because I believed in that death do you part but even so more than that because we had a child. The divorce decree, in order for me to able to sign it, states that I am against the divorce because it will be spiritually, emotionally and financially damaging to Kiana but that I respect her right to walk away.  Anyway, out of my own desperation, I asked and somehow got to have Kiana that first Thanksgiving, Christmas, Easter etc. Which means Kiana was with me for both holidays in 2011 and with her mom for both in 2012. Usually one parent gets one and the other gets the other. We made it a little more reasonable this time around and Kiana will be with me this Thanksgiving and with her mother for Christmas (btw, divorce and non amicable relationship suck for many reasons but imposing this reality on children is definitely one of them in my book). I mean even a couple of days after the hearing I offered her to keep Kiana an extra night to make sure she made the mother's day function at school since she's made so few things Kiana wanted her at including mother's day itself last year. She said yes so to me... we'll call that progress.

In the end, my attorney out of the frustration of this case having dragged out for so long asked that some of her fees be ordered to be paid by Kiana's mom. I can't say that I was fan or had any objections to that idea but it tells you something about the judge's stance that he ordered Kiana's mother to pay a small percentage of my attorney's fees... In the end the judge signed the order and I and my attorney did as well. Kiana's mother and her attorney refused to... I honestly don't get why or all this and am wondering if they'll appeal it all but the fact that the judge ordered her to pay some of my attorney's fees, the fact that in our discovery we had to turn in who would testify on our behalf and her mother literally had zero people who would state that  Kiana was better off with her in the witness list and we had over a dozen... well let's just say I slept well last night. I'm not even arguing that Kiana's mother is a bad mother, I don't think that. I just have made being a dad about as close to a full time job as I can and was fortunate enough to have an insurance that due to my health problems that helps semi cover the bills... (for all you honest taxpayers out there it's a private insurance not social security). My argument which is evident if you ever spend the day with me much less read this blog is that I'm focused on catching as much of this blog as I can... and when you don't trust your memory like you once did you wanna give it a few shots.

I went home from court exhausted, reliefed and confused. We wrapped up the deck re staining and the fence cleaning up. While it looks real good, I did mostly the dumb labor and guys who knew what they were doing did anything requiring any intelligence. But other than people who come into my home, this back deck and fence aren't really visible to anyone. Like good parenting, like good race results, every once in a while someone catches it but like most good things good people do in life, it's just something that sits in the back that if we do right, helps us feel more at home.

I went running with no route in mind after and just kept going around random blocks to not get lost and put the music on shuffle. It played a song I didn't even realize I owned... Desperado by the Eagles.(http://www.youtube.com/watch?v=rE-U5e78WHc)

Now it seems to me, some fine things 
Have been laid upon your table 
But you only want the ones that you can't get 

Desperado, oh, you ain't gettin' no younger 
Your pain and your hunger, they're drivin' you home 
And freedom, oh freedom well, that's just some people talkin' 
Your prison is walking through this world all alone

I've sat here in this blog and in life sometimes worrying about the loneliness of the last two years but the last few months, the last few weeks have made me more aware and more thankful for the connections that have been there all along. I'm not leaving the George Clooney lifestyle probably ever but maybe I can graduate to at least being a part time boyfriend every once in a while. While the drugs will continue forever, I still want to overcome my mental deficits, in fact achieving my highest lumosity scores ever this morning. So even if my mind isn't what it used to be and I mourned the break up with my high school sweetheart, I'm becoming aware that the eagles are right and I have some fine things on my table and that I need to stage a prison break. These have been some desperate times but some of the parts of my heart that were broken have started to heal and becoming more and more open to this realities will be a great desperate measure. 

Perhaps, home is meant to remind us of that. There was a tree I thought was dead two years ago. I cut it down shortly after Duke. It's been referenced in here as looking like it might be more alive than I imagined. I've kept watering it and it's still growing... it may not be like hope which springs eternal but it is spring and it's still reaching for life when things had been cut from it through no choice of it's own. 

Desperado, why don't you come to your senses? 
Come down from your fences, open the gate 
It may be rainin', but there's a rainbow above you 
You better let somebody love you, before it's too late

I'm closer to home, closer to opening the (newly stained) gate but that has come from me loving Kiana and people loving me... even when I tried to get them to not come to medical appointments... And I believe and hope that at some level it's still not too late.