Monday, April 29, 2013


Van Gogh wrote that for his part he didn't know anything with certainty but the sight of the stars made him dream. This is the life we all have to accept and on my more eccentric, egocentric days, I'm dumb enough to think I have it worse than others. I traded emails with one of the many medical facilities (if nothing else this shows my loyalty that I'm not calling them out by name) who send me bills... All but one since the days I lost my insurance have been kind enough to tell me what things are going to cost in advance because when you're living off insurance and a limited budget... it helps to have some certainty and some budgeting capacity. To give you a basic comparison, for the last two appointments in what felt like the same amount of time one was was $128 and one was over $300. There's a variety of reasons I'm grateful for a 3 month break from medical appointments.

But uncertainty can be scary but it is just a normal factor in all of our lives right? Another reality that set in this weekend was that for the first time in a year and a half, I have no race I'm training for. I want to do some things this year like do well at the Brainpower 5k, or do a duathlon or a trail race but in my view of the world you're not getting ready until you sign up for something and I have no races I'm signed up for (part of that is have a couple of months of legal and medical bills and racing is not expensive but it's also not cheap). I've been called a running slut a few times because I do all types of distances and races (the nickname started at a Luke's locker track meet where $10 got you entry into as many of the track events that you wanted to do... I did them all, including the hurdle and let's just say I was born to run, not to hurdle; someone said they are thinking about stitching that "running slut" for me which having running slut hanging on my wall would be awesome.). People have  heckled me about the fact that this lack of something to focus on that I should go socialize (my favorite one was the go find single moms joke) and I do socialize; Kiana gets more playdates than I get real dates. Running has become one of the ways I socialize the most. Part of the reason I got more comfortable running more and doing that with Kiana as opposed to having her be a spectator on the sidelines of teams sports, part of why I switched to that was that I finally joined the running community as opposed to just races when I'd trained on my own. Running and training with Kiana, and with others made it feel more like a team sport. Kiana and I did the Texas Round up 5k last Saturday for the filming but the golf card didn't work so we didn't get filmed much... There were those who talked about that the course felt a little short, some that it felt just right but either way I came in literally 3 seconds slower than my time at Duke... which is pushing Kiana costs me 10 minutes a mile I would do it but it was comforting to have it be literally 1 second per mile. Afterwards she ran her first mile around the capitol and she bolted in for the last 100 yards! She was as excited about the dressing up for pictures after and the shooting basketball that they had for kids. And that was just as exciting to watch... running is just one of the many ways we bond... But I was glad to see that both of us in all of those events gave it what we got. I got a cheesy little saying from someone that the difference between try and triumph is a little umph. We won the father/daughter division so one more medal hangs in her room.

So having done my second fastest 5k, and Kiana's first road mile next to her (about 14 mine), we went to continue my running sluttiness. I did a race unlike anything I'd ever done before, it was running up 31 flights of stairs in a race that was raising money for Lung Cancer. Now my primary fundraising causes has been brain cancer for obvious reasons but when I was falling apart in all this and I stopped running, I met some people with lung cancer, one who had done an ironman, another who had a marathon with part of their lungs missing. Now I knew all kinds of statistics and realities about brain cancer but didn't realize that lung cancer is the primary killer of cancers and that 1) most smokers don't get it and 2) tons of non smokers get it.  I was asked to speak before the awards ceremony and essentially tried to state this. When we get up in the morning, most of us know how to be better. We don't need information in order to be better parents, or be in better shape, or be in better nutrition. What most of us need is not information but rather inspiration. I've found my muse, my rituals my ways to get better races in (some of that was great at both races, showing again that this is a team sport having friends before, along and after the race and both ahead and behind me in the races is a certainly a way to help you keep going). But people with lung cancer who literally sometimes struggle to breathe and still do these type of events are some of my inspiration. But I help out with this and with brain cancer research and with Livestrong for one reason alone, that a lot of good people whether or not they end up beating it, have a better chance if help raises awareness and money that will allow scientists to gather more information.

When this all started, we had a poker game at the hospital the night before the biopsy. Then when doctors didn't know whether the surgery was high risk enough, I had a poker game at my house to ask friends what they would do. Even newspaper articles have quoted me saying that I'm a poker playing and that the reason I assume I'm not going to be part of the minority that beats this is because I play the odds. But my friend Henry recently emailed me and said it'd been too long since we'd played poker so I'm having a poker game this Saturday night at my house  (if you read this, you're likely welcome) and it occurs to me that some of my view needs to be a little more enlightened. The game we play is Texas hold'em. You get to see something about your opponents options with the cards on the table and there are some hands you have to play because you're literally blinded in. And in the right spot, you have to play the cards you're dealt no matter how good or bad your odds are or you may get eliminated either way. One of the biggest games I ever one was with a 2 queen where late into the game, I flopped a full house to a 2 q 9 j 2 to someone who had queen ace. For those who don't understand that, let's just say that someone with a much better hand lost because of random odds. I would not have played that hand had I not been forced into it. But I won on some level of random luck. If I haven't been clear on this, I am betting the odds but I'm playing to win.

This weekend I also did counseling and went to church and in both of those I sat at the back. I'm not comfortable there but they are things that help with the uncertainty and provide a place that feels homely. I'd rather be in the front of the pack in races (Kiana and I went 9th and 10th respectively at the 5k. At the Frost Tower run, I came in second in my age group and in the top 10 over all. And showing you how I approach the world, I think I could have done better but I had no clue how to approach that race). But it is because I go to things where I uncomfortably sit in the back of the pack sometimes that I am able to get to the front of the pack at other events.

No MRI's, No doctor's appointment, shoddy finances, no job, nothing I'm training for so the uncertainty is certainly less than comfortable. Still, "Uncertainty is the refuge of hope" was written by Amiel.  Those will all come back I imagine but as was covered at church now remains faith, hope and love. And to me they are all pretty great and in my current life, all 3 feel very certain.

Wednesday, April 24, 2013

Good Memories

I’ve been to Duke 5 times… Each time I’ve done something else around there or near there because well… what’s the polite way of saying it sucks to be flying somewhere just to had your brain cut into or to have it scanned or to… etc. So I’ve made a trip around each one. This was the first time I had ever done a trip to Duke. After the race, I played ultimate Frisbee and invited the guy who won the race. We covered each other and both scored on the other.

I went to lunch with old friends, went on a second Boston memorial run. (While we all hate what happened in Boston, I actually love the fact that these memorial runs are happening around the country and have loved the meme that went around facebook, if you’re trying to target the human spirit, marathoners are the wrong group to target. And of course those guys knew to hide cause they couldn’t take us in the ring and you better believe they can’t outrun us. It is great being part of the running community because we are awesome and it clear that we are one). The winner of the angels among us 5k and I ran part of it together and he went back to finish with his wife. He had family in town before his appointments but he kept hanging out with us. He mentioned to me that everyone keeps asking how he feels physically and emotional or if he’s suicidal. He doesn’t want to talk about that and of course he’s not suicidal. Some of his friends had a tshirt made that he gave me. I wish I had one of my Leonstrong ones that were made to return to him but I don’t even own one for me. But while the shirt that was made was fairly appropriate his wife would tell me that they actually wanted to have one printed that said, “Fuck cancer, I’m going for a run.” (I would have loved that shirt) He hung out with us during the evening and while he had other family in town, I wondered if he, early in the stage and me 2.5 years into the stage, weren’t doing the same thing, filling the day because what was going to be said about our own brains the next day was a mystery.He talked about how some of the things he felt he thought were signs of being old not of anything else. And since this guy that whooped me in a 5k I tried to encourage to do a marathon, he said I may do one of those when I get old or if this disables me with a twinkle in his eye.
 Honestly, it was very good to meet him because in this entire journey he has been the person I’ve been able to relate to the most on so many levels from athletic to attitude to frustration with not working… The one thing he is doing much better was that he was taking his significant other to all the medical stuff and went back to finish the run with her. There are days I wonder if I miss Kiana’s mother but at best I miss the idea of her because with all the things she’s pursued (there has been more legal threats about appealing this or that, texts and emails with more swear words than are appropriate between friends). I think I handled that wrong trying to protect her from it… but I don’t know… here down the line, with her current behavior and mine, it’s fairly easy to be divorced when I don’t recognize her and she’d definitely never be asked to be one of the George Clooney girls. I mean what’s the polite way to say that I sent an email saying Kiana got accepted into the GT program and rather than an “awesome” response I got a response about how it was all thanks to her parenting over 2 years ago… what’s the correct response to that? I feel much responsibility about many of the ways I’d handled much of the relationship especially after the cancer diagnosis but I can’t change the past… and I won’t live in it.

Still, the appointments came Monday and I went and ran and watched Doctor Who because when the appointments are in the afternoon, the morning feels so so long. Even when things feel like they should be stable, it’s tough to have confidence when you feel fine from day to day but also take pills from day to day.  But nothing had gotten worse on any tests or MRI’s so I’ll take it. And turns out they had a flower garden at Duke and some really cool home made restaurants. And we talked about some of the coping mechanisms that I’m using for memory (I still call it cheating). And if you’re wondering why I’m  not talking longer about the appointment it’s because somehow it was awesome that it was only 3 hours out of a 3 day weekend! And I’m not thinking much about it.

And I went home and last November and December I got to go two months without an appointment… and now I may get to go through May, June and July without one so 3 months… And my attorney thinks that after the mediation and the appeal they are trying to make they don’t have a leg to stand on so, I’m breathing a little easier than I have been in a while. Between legal and medical bills, I’ll still be quite in the red this month but I got bumped on a flight not too long ago and am thinking it may be time to take a trip just for fun…

In 3 days , I do a 5k pushing a stroller and Kiana and I’s first race together. E60 caught a lot of the last blog and this entry so we’ll see how it’s portrayed there if and when it’s aired in the fall… But this was the best trip to Duke… And I did lumosity today. Kiana and I went and picked up garbage today on the Austin Marathon’s trash run. Though she called it a recycle walk because we were walking and we did the recycling option… And tomorrow I’m meeting with a minister and having a meal with a cute girl… and maybe like this Duke trip, cancer, until and unless it grows, will become a smaller and smaller occurrence. My memory may not be all it used to be but even at places like Duke associated with cancer, it turns out you can make good memories that make the directly cancer ones a little smaller.  

Sunday, April 21, 2013

Angels Among Us

I revolved this trip to Duke around their annual 5k, angels among us. Now if you've read this blog long, you know I love that waiting for an angel song but it was less than adequate to be waiting for some theoretical angel because there have been angels all along. Hebrews talks about being kind to strangers because sometimes that's how we entertain angels unaware... I've had many of those.

Thursday night before flying out here, I went to a memorial for Boston and there was Kiana an angel in front of me, several runners that I hugged tighter than usual including some of the George Clooney girls (for those who keep asking what that means, it means one thing and one thing alone, that having gotten left in the middle of all this mess, I'm incredibly scared of commitment). I semi panicked about bringing the girl who I had invited and talked to Matt from Hawktober about it (he and I just got named as honorary cochairs of a race in Austin, I'm still here trying to keep everyone away from my medical appointments, the way I did 2 years ago when I tried to keep my brothers and mother away. He said, look just you need to realize you can tell her that it's just a trip it doesn't mean nothing. Well, that wasn't true but somewhere I settled that it didn't mean everything either... If it tells you something other people were semi invited and uninvited...

But I was nervous about this 5k... luckily, the media thing is fading but E60 filmed me lacing up (if you think I'm usually bad about the tying my shoes thing because they come undone all the time...) and racing. But the main reason I was nervous about it was because this was a "sponsored" race. I had asked people to donate for brain cancer research and while I have no doubt that 99.8 of the donations people would have donated out of the goodness of their heart and would have donated even if I was just walking, me and unemployed guy whose biggest deficit from the last couple of years may be confidence wanted to "earn" their donation. So I had trained for a 5k  which is tougher than I realized being more of a long distance guy. Someone had asked me if I thought I could win and while my time are respectable, I always state the same thing, my goal is always trying to get a PR, to come in ahead of a previous version of me. 

So I ran, and even now 2.5 years into this process, I am still not sure whether I'm running to or from something but either way I ran hard. Usually my playlists are focus but to try to relax the first song was actually Bad Bad Leroy Brown just to smile for the first half mile or so. Jen, a friend I had made at a Livestrong event that now lives here had come to do the race and who was the "stalker" who gave me the current IPOD was there. So seeing her and her husband also made me smile.

I was in 8th at mile one as I counted seven guys around me on that first curve. I passed all but 2 in that second mile and then I was in 3rd. Nathaniel Friedman, newphew of my surgeon Allan Friedman, had created my training schedule and we'd work on speed so I could have a negative split and have some turnover left at the end of the race. And I turned it on and passed the guy in second and got my fasted 5k ever, a 17:40, 14 seconds better than ever on a tough course.

But that wasn't even my favorite part. Obviously I'm competitive both against me and against others but the winner, the winner was also a survivor. He had surgery in January and had also revolved his trip around this 5k. He is more of a short distance sprinter guys and his 5k pr is more like 16:30 (I don't think I could get down that ever) but he has achieved those times after a bigger tumor, higher grade surgery. It was a blessing to meet him because it makes me think that maybe, losing some of that dead weight in our head makes us go faster. But I also met another survivor's mom whose son is having to relearn to walk and yesterday was proud of him for completing the event. I listened to her and was grateful for the connection but also pointed to her to Matt who will always be one of my heroes. He reminds me not complain (or at least do it less often) about my deficits but try to overcome them. His have been mostly physical mine mostly "mental" but by the way, once again, my lumosity score are the highest ever this morning. And yeah one of the doctors says it may just be getting better at the games but that's what a lot of improving mental skills is.

As I walked around grateful my friends raised $3250, I saw one of the trials Duke is working on specific to my tumor where they believe some progress is possible. Or as they like to say, at Duke, there is hope. The event itself in it's 20th year raised the most money it's ever raised, over 2 million dollars. The guy speaking talked about how Duke has been number one in this stuff but today his favorite number was 2.

He said something to me that reminded me of a guy 2.5 years ago. He said he didn't consider himself a survivor (they encouraged us to wear stickers). It took me quite a while to think of myself as that and I tried to encourage him a Livestrong mantra which is you're a survivor from the moment you're diagnosed. We invited him to dinner with some of my friends and I'm glad to say he came. I stayed at my friend Mitch's  house who I met in Florida and saw him a few days before the seizure that started this all. People like , Mitch, Lydia, Sara and Suzanne who had both been there before and when this all started were there. It was interestingly enough mostly an ultimate crowd, where most of my exercise time was spent before becoming a single dad. And this morning I am going to play ultimate with them and this afternoon I am running at another Boston memorial with yesterday's champion though this time, it'll be side by side.

So I have the actual medical appointments tomorrow and I'll do my ritual of sitting in their mediation center and remembering that I hand these guys time and money to monitor and fight this because I have always had good people in my life. There at dinner, I realized I never needed to wait for an angel, I just needed to recognize some were there before this who have stayed all along, some have come because of this, and that like those I met this weekend, I choose to believe some more will come and I pray that once in a while I can be one of those angels to/for someone

Oddly enough one of those angels was shocked that I'd never heard the song angels among us. They wrote down the lyrics and it was actually the last song I listened to before starting the race ( :

Oh I believe there are angels among us.
Sent down to us from somewhere up above.
They come to you and me in our darkest hours.
To show us how to live, to teach us how to give.
To guide us with the light of love.

I imagine odds are that if you read this blog, you're one of those angels. So my fastest 5k ever yesterday, the wings that have carried me all along, have been, at least part of the time, me borrowing yours... so thank you.

Tuesday, April 16, 2013

Question Mark and Exclamation Points

Yesterday was a day that messed with me emotionally in far  too many ways. I was preparing for a young adult cancer survivor group. I was babysitting for a little girl for Kiana to have a playdate. I was trying some writing trying to figure out what to do with my George Clooney approach. I got an unexpected medical bill. Kiana’s mom has decided to take a whole other legal annoyance. I got commended by the Texas State Legislature on the Gusher Marathon. There was some total bad asses at Gusher, a couple who had lost 500 lbs (300 for him, 200 for her) and the guy who had finished his 50th marathon carrying the US flag... and the stroller guy. I was enjoying their company and their lunch...

And then I heard the news…

I don’t know what idiots bombed the Boston marathon but as a friend pointed out, they weren’t complete idiots because obviously video of people panicking while there’s flags for every country on display will instill fear which I guess is their goal. And you better believe those of us in the running community are severely pissed and those guys better stay in hiding because they can neither take us on in the ring or outrun us. I had a lot of friends in Boston yesterday and am grateful that thus far the only one I know about is someone’s mom whose in the hospital and is going to be okay, at least physically speaking. I think psychologically speaking we’ve not quite measured what trauma does to all of us in a completely measurable way.
I was there in Boston last year and could have deferred to return this year due to the horrible weather. I also had a charity entry offer (If I could raise enough funds but I passed it up since I’m too proud to do Boston without qualifying). I had calls and emails coming in as I was sitting there trying to make calls and emails to people there. Confusion, pandemonium on days where that’s only supposed to come from exhaustion is the definition of absurd… I can’t shake the image of the 8 year old who hugged his dad right before the finish line and is one of the people dead from this.  While I understand that someone’s terrorist is someone else’s hero/freedom fighter, I have no idea what cause you could believe in that would let you justify being part of that. War and beliefs and ideas have never been a clean thing but I prefer the old school form of war were we had soldiers and there were collateral damage of civilians not that they were the targets. They’re both absurd but there’s a gigantic gap on the levels. 

Death is generally senseless. Whether you’re Christian and believe it’s all a sin/hell/heaven/redemption cycle. Whether you’re an atheist and think it’s all an evolutionary the fittest survive cycle. But life doesn’t have to be but if you’re just going to work, paying the bills, and watching TV…. I’m not jealous. I miss putting stamps on my passport… found it in an unexpected place recently so that gave me hope. I miss having confidence in my brain though my lumosity scores are higher than they’ve ever been and that gives me hope. But I know that people want me to be scared of cancer… a couple of the interviewers have been confused by my lack of fear of it. Death is inevitable but life isn’t. Some people miss life and that is so much more horrible than death. Yesterday messed enough with me to where even I missed running but today I’ll do a track work out and get back to the pattern.  I can't imagine people who had qualified and were running the Boston marathon were passive participants in life and I imagine their friends and family cheering them on meant they had good connection. So I hope/dream/pray that I was one of victims of this senselessness that I would reflect that's it's better to have loved and lost than to live in fear. And I pray that for them though right now, whatever their emotions about this senselessness I hope no one's' doing anything but listening and hugging. 

I am not preacher nor a counselor just an unemployed guy with cancer who is trying to live his life with some exclamation points along a path that has had too many depressing and gigantic question marks… Those exclamation points make it a lot easier to live with the question marks and I suppose when the time comes, those exclamation points will make that final period a little bit easier.

Sunday, April 14, 2013

Bad Medicine

If you haven’t already watched the most horrible youtube video ever, it’s someone who captured me singing Bon Jovi during the Gusher Marathon. Bon Jovi was coming to town about a month after the victory and ticketcity was kind enough to give me 2 tickets to the coolest concert, I’ve ever been to. There was a great atmosphere, great lighting and much better singing than I could have ever achieved and I owe apologies to for destroying his video… but I had to decide who to invite. Let’s just say that I invited the current George Clooney girl…Who had been kind enough to have dinner with me the night before court and we got two very interesting fortune cookies... mine was the center one, hers was the hesitation one

I am not superstitious but I am a little bit stitious so it was intriguing to get those. But me, a guy who hasn’t had a girlfriend since high school, the other George Clooney girls I’ve taken pictures of but never with. As you can probably tell from my regular posting of pictures, I like photography but I think it captures something, perhaps like the Native Americans believe it steals a part of your soul. Well, the deal with Ticket City was asking if I would be kind enough to take pictures and post them share them etc. And so for the first time in over 2.5 years, I took a picture with a date…

Who is this girl? Well, I’m not going to give you her name or social security number but it’s an old friend who I may be entirely too comfortable with. But part of the attraction is that she’s almost as smart as I am/was and though she used to live in Austin once upon a time she had moved away. There is the simple fact that by knowing her for so long there’s less of a “getting to know each other” phase. She’s moved back recently but when this all started, she was one of about a dozen friends that flew in between the diagnosis and the surgery. Because she was also valedictorian back during her high school days and we had traveled to a couple of places together, she notices the deficits, frustrations that I have with the post cancer surgery, memory and financial deals. Only time will tell if she’s ready to deal with all that’s required to put up with me but I am little more open to the possibility.

Still, I couldn’t help but sing my heart out and laugh when Bad Medicine came on

Your love is like bad madicine 
Bad medicine is what I need 
Shake it up, just like bad madicine 
There ain't no doctor that can 
Cure my disease 

The bad medicine prescriptions still continue where people are trying to get me to try very many foreign substances to beat cancer… I take pills every day and still have woken up in ambulances and still there are focal seizures. I don’t know what the polite way to say this is but I’m not trying to beat this. I go see the doctors because they have a better clue how to monitor it.

This new George Clooney girl is interesting; we aren’t  at the boyfriend/girlfriend stage and I am not diving into that with anyone but it tells you something that unlike the other girls who people have seen us and said no one would guess you’re dating, she has literally been the first girl ever introduced as the current George Clooney girl (she rolled her eyes). With that said, well, last Friday, 2 weeks before the trip I asked her to come to Duke with me and on Monday I asked her to the Bon Jovi concert… She’s coming to both which is the first time since the original surgery over 2 years ago that I return to Duke with anyone. When she was trying to come to visit back when we were “just friends,” I blew her off and she contacted Todd, got more details and got here to visit. So, call it penance but she showed up when I was first trying to protect everyone from my diagnosis and so I’m inviting her to the follow up at Duke and that if all goes well, I may get the biggest break from cancer yet. The pills continue daily for the rest of my life but no medical or legal appointments regarding this diagnosis for 3 months straights which would be the first time in what feels like FOREVER.

She asked a question which no one has ever asked, despite the phrase that I’ve used dozens of times “why is it that you say that if you didn’t have a kid, you’d go climb in the grand canyon and die when you die?.” The answer is that the Grand Canyon is a lonely place. I am the definition of an extreme extrovert and to go to a place where if you get lost on your own you could get lost for days if not for life (or rather until death). So, then perhaps no one would notice if I die and I’d damage them less… But then again, the Grand Canyon theoretically started as a small separation that got that big from a crack that split over time… and perhaps with a break from the medical and legal stuff (I’ve slept better the last 4 nights than I had in who knows how long), the heart is a little lighter and opening up more than it has in a while.

There is a do not resuscitate order in place and Texas law has a refuse to treatment law that lets you refuse treatment when you believe it futile. If I'd lost custody, it would have been temping to get both into place but the universe was kind enough to reward the things I've put the most effort into. I run and keep up with the medical stuff to know that and have some confirmation that I am still fit and fit to parent. I did a 2 mile race trying to prepare for the Duke race pushing a stroller and Kiana and I came in 4th overall, sub 11 and won the non collegiate division... At that Cap 10k, the one that it had been announced I'd been at, I got my fast time ever 37.26. Between Kiana and I we've done a race every weekend since February 17th... People ask why I run so many races, why don't I just focus on one. One of the girls from my group called me such a running slut.  There was an entry in here once called avoiding cancer… and that’s what I’ve tried to not be, to not be cancer, to not be just someone that takes resources since I don’t have a job and provides nothing back. I volunteer places still and help out with various things like runs, math tutorning and ultimate and livestrong events to name a few. The healthy cells and healthy human beings are ones that both take and receive… if you don’t find the right balance, it’s asking for a collapse much bigger than the ones that put you in ambulances… I hope I'm doing a halfway decent job.

So, I am trying to do the parental thing as best as I can and the helping society out with the tools I've got left… and I’m not going to take every alternative treatment that people are recommending because I trust my doctors. And even if there is no doctor that can cure my disease, I am going to say that the closer of Bon Jovi is more my style. No promises on what will happen with the latest George Clooney girl but people like Todd, her and friends and family have provided the love I’ve received. It has not cured anything but it’s the best medicine I’ve had… And so I went to church this morning and maybe Bon Jovi had some other lyrics that were right… it doesn’t make a difference if we make it or not, we’ve got each other, and that’s a lot… for love, we’ll give it a shot. 

Thursday, April 11, 2013

Suspension of Conflict

A few things have occurred since the last entry… including the introduction of latest George Clooney girl… and we’ll address that in an entry soon but… the custody challenge is over and I want to keep this entry to that topic.
Texas law requires mediations be set before final hearing. The final hearing had been set for July 1st, this was the 4th legal challenge with a previous mediation without attorneys, an emergency hearing that Kiana should be removed immediately (that did not occur), a hearing that recognized that Kiana is better off with one of her parents than in daycare but that her mother should have access to my medical records but this was a mediation… I’ll tell you after the last couple of years of financial struggles, I’m curious as to how I never thought of going into the legal or medical fields…

Having already been through three legal settings where it seemed that they didn’t blink, I had low expectations of this mediation. Kiana’s mother’s attorney had stated once to me a long time ago before I had an attorney that there was no point to a mediation because neither of us was going to give up custody… Well, it took the right mediator who was intelligent enough to keep us in separate rooms so that we could sit there and focus on the issues and not on old emotions…

I have no idea what was said in the other room as the mediatior went back and forth with clear capacity that he knew what he was doing. He started in the other room, where it seemed he spent most of the time or that may just have felt that way. I’ll always wonder what was said in there because with our first session, the custody challenge was off the table.  It took seven hours and a lot more than that in fees but in the end, the conclusion was that this legal fight that I should only have supervised visits as opposed to being the primary guardian because of my health issues was over.

It had been requested that I give blanket access to my medical records to Kiana’s mother. While again, if you read this, I am not exactly private about my medical issues… my main hesitation is that when you don’t trust your brain, your biggest issue may be confidence and you need to be able to share this with your doctors and have them say yeah that’s not a big deal, or hey that’s something we’ll keep an eye out for but it may not be a big deal. At the survivor’s breakfast and at the young adult cancer group, there is some echo of how much do you worry about this cough (for lung cancer patients) that headache for us etc. But if you think that someone is sort of in the “back of the room” trying to use an excuse to take your child away… then it would make it harder to be more honest about fears from appointment to appointment. But I also understand that if you’re a loving parent, and I believe her mother is, you’d be worried when someone is raising your child with a disease. The conclusion there was that there would be an annual summary written every April at her expense (come on now, if there’s a cost to hand you my medical records, I’ve given my doctors enough money, you can pay for it) and that if there was ever a time I was hospitalized she would be notified immediately. I can’t imagine any parent who wouldn’t want that.
Because it’s been a big part of mine and Kiana’s life and I’ve become an advocate-of-sorts for cancer causes, there was an interesting provision put in there. As is standard, the non-primary parent gets an extended summer visit. Her mother and I had a conflict because Kiana had been accepted to camp Kesem, a camp set up for children whose parents have illnesses. Her mother stated she couldn’t go this year but somehow the mediator managed to help us make it to where it was established that any summer Kiana was going camp Kesem that couldn’t be a time where she was going to be with her mother. To me, the main goal of that was simply that I’ve learned along this course, that I’ve gotten to be a better runner by listening to other runners and coaches, I’ve gotten to be more at peace as a cancer survivor by interacting with both excellent doctors and other survivors, I’ve gotten to be a better father by hanging out with other good parents and professionals… But even while I am the guy whose in headlines for being the father with brain cancer that won a marathon, I am not a “father” every second of the day, nor a “runner” nor a “cancer survivor” but when there are moments that require those focuses to be sharper and both the professionals and the human contact have helped improve that. It is my hope that because this has been a significant part of Kiana’s childhood that kind of summer camp will help her make some connections specific to that if/when it’s necessary. So I appreciated the flexibility.

In a perfect world, we’d be able to hammer these things out between us but obviously we’re nowhere near that. I’ve tried to get her to go to counseling forever so that someone can keep us focused on the only connection left but she’s said forever that I’m not ready and still wouldn’t go.

There were some other things like sources of conflicts that we worked out. No one got everything they wanted… I was trying to get weekends exchanged so that I had Kiana the same weekend as other single fathers have her to have playdates so to help that feel more “normal” to her (there’s been another single dad from Livestrong that our kids didn’t get to meet till spring break) but her mother wasn’t open to that and I didn’t want to spend too much time on it so it didn’t shift at all. We wanted slightly different approaches to medicine than the Texas code required but I do think Kiana won out here with some good health insurance options (I found out there while making some phone calls that even if I wanted to or could, I cannot return to the workforce until at least January 2014). She wanted some things that didn’t go her way.

I am actually a mediator and I’ve always loved an old quote. "The key to resolving conflict is suspension of one's point of view as the only point of view." I believe both her mother and I did that.  But the one thing above all, in importance to me, is that we walked out having (with help of course which again shows why I want to go to counseling) resolved it between us and not put it in a judge’s hand. The mediator said something I wrote down, “the family judge doesn’t usually decides cases, he just decides who the decider is going to be.”  So I am glad that he helped us and that we both proved capable of suspending our own view as the only point of view and reminded us to put our fate in our own hands. I’ve learned some of those lessons from this journey the hard way and some the easy way. An old military friend said to me, 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. Signing up for less time with Kiana was one of those hills for me… getting Kiana better health insurance was one of them. Let’s just say I am still alive. But I really am proud that we worked it out amongst ourselves. We’re still a long way from home or from good coparenting or from properly establishing trust… but I am glad this chapter is over.

While everyone likes the running story, the honest truth is that’s just simply how I refresh. It tells you something that the workout Tuesday night I was dragging at best knowing that the legal setting was the next day… and that on the day of the mediation I was up at 5 am crying in worry because someone who left in the middle of cancer was trying to take my child away long before cancer does. The mediation took a long time and for the first time in a while I missed a run on Wednesday because I had a fun commitment shortly after… and skipped lumosity and had a fun evening. I’ll do a hard workout today and do lumosity and all that jazz but let’s just say that literally the moment I got to bed, I closed my eyes and I was out faster than you could have said good night with at least one piece of mine feeling more at ease than it has in months. This morning I got up and took Kiana to school like I have almost every single morning since she started and like I will almost every single day as long as I can.  

Friday, April 5, 2013

Dead Wrong

The media thing continues… oddly enough the local paper covered me after most of the international ones ( I like the fact that there is no mythology that I never blinked being created because frankly that would be dead wrong. A cursory reading of this would tell you that I’ve thought about quitting a few times, way too many in fact and that without help, without great doctors, good counseling, without running without friends and family, I would have ended up dead and wrong. When I was a complete mess, friends suggested I get counseling, go to church, get laid, get high, get drunk, get back to running, start smoking… let’s say I did some my mother would be pleased with and some she’d be less than proud of.

It has been an odd week dealing with things however that are dead wrong. An image of me was circulating the internet saying that I was a girl using cannabis oil to beat cancer… While I am parenting a cute little girl, I didn’t think I looked girly enough to make a girly poster, I contacted them and they were nice enough to take it down though originally they told me fuck you. There have been inaccurate details in most of the journalistic pieces and I’m not one to get stuck on details but while there’s a custody hearing pending though, I’m certainly not going to let the internet promote that I’m using illegal substances. And while I’ve gotten suggested 20 cures to cancer which if I did them all I’d be dead in a few days I imagine. While anyone is free to take whatever approach they want from all parts of the world and different substances, and I don’t judge them in any way for it, I trust my doctors. They are human enough to make mistakes but committed enough to focus; I’m not sure what else there is to ask. I don’t think they are slaves to pharmaceuticals or hospital administrators. I don’t know that I trust those guys that much but I think my doctors, like all of us, have to contain some of who we are but that the best of us shines through if we’re honest. I saw him on Monday and we had a great appointment. I got to see the neuro oncologist here in Austin. All the media guys want to talk to my doctors which I have no great problem with except that unlike me they have a job and it’s to save people’s lives so I’ve been limiting who has access to them. This is only the 4th time or so I’ve seen Valiant but we’re getting used to each other even though he wears bow ties but you know bowties are cool. He who has only been my doctor since last August, interviewed with Comcast this week and he sent me a study I’d never seen before that talked about 5 mitigating factors out of which I only have 1 which makes the median survival rate closer to 8 years rather than 4. That doesn’t sound like much but somehow I was pretty thrilled. I don’t know when that piece or the headlines news one comes out or if someone will cut them. There’s been some good jokes about this media thing but my favorite one from a media person was we were going to do a piece on you until the pope got elected. The other was a friend asking if all this media stuff is going to my head. It’s not and frankly I’m not someone who is a fan of things that go to my head.

But with all the doctors who have talked to the media, they check what I want them to say and I say tell them whatever you want because I know from day one and until my dying day they’ve understood me and have been watching out for me. E60 is talking about coming to Duke making a a small documentary so the slow news will continue for a while. People keep asking if I get paid for this and I don’t; one that’s against journalistic principle and two, I am doing it for the same reason that to this day, I attend other cancer things and read blogs; there’s something that catches the human spirit in a way that statistics and medical journals don’t. Some of those things help me keep going and I hope to be passing it forward. I am a lot more comfortable when we’re focusing on the parenting angle than the athlete or cancer angle because I feel like the first one is the one I’m getting right more than the other two. People ask if I’m training harder and I’m not… because I want my legacy to be someone who helped and someone who raised a kid and so in spare time I volunteer places. And I am not thrilled about not working by the way. I wanted to get back to work after getting fired, even started working with the Department of Associative and Rehabilitative Services until the ex filed this custody hearing stating I should only have supervised visits and then I let them know that until this is settled, I’m going to hang out with my kid and that’ll be that.

I met with my attorney Thursday where their latest petition suggests that I am ignoring what my doctors say by running marathons. Well… there is a piece where the Duke guys are being quoted in the Wall Street Journal saying they’re fine with it and there will be a piece on Comcast where the local guys are also fine with it. There may be doctors in the world that wouldn’t allow this or would discourage this but not in my case and not my doctors because they are fucking awesome.

So it’s been a cancer filled week… a medical appointment, a newspaper appearance, a legal preparation date, a tv interview… a race on Sunday where it’s been announced I’d be at... Many emails and 2 sit down times with local survivors that just needed an ear and a beer. Tomorrow I speak at a young adult cancers summit and I spoke to a bunch of UT students about not having any excuses for running. Mostly there I actually tried to focus on the fact that in college I put on 35 lbs, that my daughter did almost a 5k at a school function, on my friend Matt who had to relearn to walk and talk and did the marathon. The running and winning a marathon may make a good story but I do that because it’s where I feel normal, where cancer hasn’t taken a step from me. My memory functions get mentioned in most articles but I haven’t given up on those, maybe they won’t get back to where they were but I’m trying. I still do lumosity most days, still use coping mechanisms, still using a smart phone to make up for some of the wits I lost. And it may not get back to where it was but I am going to keep trying.

But I have had some meals with some people who were here long before this and will be here long after where it also felt normal. And I go see some brilliant Duke doctors in two weeks. And I am going running in the morning. Because trying to do it with guidance, with company, with exercise is how I’ve avoided being dead and wrong and I’m going to keep aiming for that.