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.

New Things To Say

So with nothing to train for, I only went out and did one of the group's workouts last week. I'm a goal oriented guy so it's tougher to be running just for the love of the game... I can do that with sports where the goal is so obvious (make a goal, basket, etc) but with running until recently it had just been a way to cross train for sports. It's when there are races coming up or with someone next to me or a time goal that it's become a "sport." (Can you tell I'm competitive?).

I keep thinking about signing up for a new race to have something to train for and focus but in less than a month I start coaching a marathon training group and that will come with some regularity and a goal again. Last week a friend of mine who is photography producer asked if I would be part of a photoshoot for a day of the dead thing they are doing... it had nothing to do with cancer or sports, just a photo shoot. I was amused that I would be posing unrecognizable as dead after all the other media things that have occurred. (Me with serious make up on, check it out http://instagram.com/p/Y1EqqMANGo/)

During one of the media requests... they asked if I just had the same lines over and over again. If you've watched them, you know that's not true but the reason I don't is because of my memory problems I just answer things as they come. I actually prefer the edited versions where they make me sound a little more eloquent than I am. If you listen to the straight up ones, I do more saying things like "you know", "what i mean by that" etc because in simple frankness, a guy who used to win the debates in college is now trying to buy time to get his act and memories together. Close friends (and Kiana always) have pointed out those short term memory problem when I repeat myself sometimes and sometimes I think I may have done it, other times I suspect I may have and others, I don't recognize it. They aren't horrible or dysfunctional, they just aren't what they used to be. This makes me nervous of how much of my own life I'm missing. It's why I accept some limits  hoping that if I catch more of life and especially more of Kiana's that I'll miss less of it in general and remember it more. Maybe that only makes sense in my own  head. It's part of the reason why there's so many pictures in this blog... because I talk too much here but the pictures are frozen moments where we catch the hope and meaning and beauty of life (at least mine anyway). How do you describe instead of show when in the middle of playing in the playground, a perfect rainbow is over Kiana's head? During those moments, with or without cancer, I don't understand why I can see more kids watching tv within eyesight of the playground than there are kids on it. But then again, I pay to run 26.2 miles and my brain is screwed up...

But I've made a decision that for at least a couple of weeks I'm going to not sign up with some future goal in mind of a race but just enjoy the now a little more. I start coaching the marathon group I train during the summer at the end of May and there's track meets coming up again this summer which I'll sign up for and see if I can't repeat breaking that 5 minute mile. I have an ultimate tournament this month. And while I'm a creature of habit,  here in May, I'm going to do somethings I've never done. I signed up for a 5 de Mayo race last Saturday at the last second and got my fastest time ever (17:36) without a pre-designed playlist and the wrong gear on (it was also perfect weather and a pretty nice course) I played in a floorball tournament and turns out even if you're in marathon shape, lateral motion and something new can make you super sore. I am doing my first adventure race ever because the spartan race read the story and was kind enough to give me one. Last November the first month I didn't see any medical staff for cancer, I went and a tooth fix that had had a cavity for way too long. This year, I'm fixing some cavities around the house. There was a leak under the sink that a friend helped me out with and it's great now. My deck needed some work and me and some guys who know far better what I'm doing started fixing it yesterday and they pointed out I should clean my fence and until we did so, I had no clue fences and dirt were different color. It's interesting, when I start becoming open to life feeling more settled, I become more domestic. Shortly after the Duke surgery I started painting the house etc... In the first month with a break from medical apppointments, I got kitchen plates and Kiana got some new things in her room. This time I'm cleaning up the backyard and Deck some. In each of those I've had a variety of help... but my life, while long from  being settled perhaps like my cancer, is feeling more stable, more like home. So I try to let my home reflect that.

I thought the baby mama drama was about as goofy as possible until in the middle of that photo shoot Thursday I got a call that Kiana's mother's attorney was asking to be excused from the case without her client's permission before all the mediation paperwork got finalized. I honestly have no clue what's going on there but I don't think attorneys do that often. Court is set for tomorrow and of course I'm worried but how often do you see attorneys who don't want to keep representing a client? I've apologized as privately and as  publicly as I can for screwing up my marriage, mention the affair I had several years ago in here, mentioning how I totally screwed up this diagnosis originally in that Livestrong video (www.livestrong.org/iram). I was glad to see a picture that when the past calls to let it go straight to voicemail because it has nothing new to say.

There are some things that I have continued to say to certain people like I love you or the spanish version, te quiero/te amo but even now a couple of years after all this started, I don't say it nearly enough to nearly enough people. And somehow while that's not something new for any of us to say, for me it keeps being a way to renew.

Uncertainty...

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.

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.  

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, http://www.kintera.org/faf/home/ccp.asp?ievent=1058997&lis=1&kntae1058997=6CAE55A4A88D49188688A0D7DEB46305&ccp=640272). 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 (https://www.youtube.com/watch?v=y_4Xfj2LRSA) :

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.