Saturday, August 31, 2013

Run The Gap

I am an optimistic guy... always trying to hold on to hope... to cling with conviction that we can... we can be better even if the situation can't be. But this entry I write with so many emotions....

I just finished the Pocatello Marathon, marathon number 8 and the first one since I won one with Kiana. I ran it with conviction on a whole different set of factors than I've ever done. I've never gotten a cold marathon... Apparently I bring the heat with me. It was the first marathon I'd done since the one I had done with Kiana. And I had the goal that has been stated here over and over, I wanted to break 3. It was the first marathon I had done at this elevation and had a decline (started at 6000 ft and ended at 4500)... it was the first marathon where I was speaking at the pasta dinner the night before so the nerves of the race vs the nerves of the speech were competing with each other...Coach always makes fun of us for "trotting out excuses early" before races. I knew this was a different game but I didn't make any. I knew I could do it somehow or another. I was intimidated by the heat, by no shade after mile 9, but I planned to gun it.

I went and had lunch with Kiana before catching the flight. I started the speech saying that since I always use potatoes to carb up that we should come up with a new nickname for lazy people that's not couch potatoes... it should be couch ______, something that runners don't eat (feel free to throw one in). And then I went to the speech telling the stories of my first marathon, some jokes about this cancer journey, telling about my mom's first and only half. It was the hardest I had worked on any speaking engagement and at the end of it... there were people both crying and laughing at me (I guess that means it was really bad eh?...). While I shared the victories of winning age groups and stroller divisions and a marathon behind the cutest girl has
ever seen, I also shared the struggles of waking up in an ambulance twice. And I finished saying "For some of us, it will be a pr because this is the first time covering the distance. Others will have to deal with expectations not being realized, the thrill of exceeding them or the frustration of disappointment. I have finished marathons screaming out of joy, out of exhaustion, out of frustration but shortly after them all, I smiled. And if there's anything you remember from a guy with memory problems, it's that the journey is what matters. The training is the work and the marathon is the reward. And no matter how it goes, keep going till the end and well after that. Enjoy your reward."

And then I went to run... and I felt great. I just went into the mentality of that this was a new adventure from
the same old ones... I'm not looking for a new life or a new love, just a better place to die. I finished the first half in 1:27 the fastest half ever in a full but it also might have something to do with that steep incline, the sun not being up and being completely in the shade. At mile 12 it was the most my quads had ever hurt but they felt fine if that makes any sense. At mile 14 there was a sign that said slower speed aheads and I joked to someone running near me that wouldn't apply to me... ahh hubris.

And then at mile 15 I vomited and I said to myself no problem, you got plenty of time. Just don't make the Austin mistake of not hydrating or eating. So I kept doing that and I kept throwing up. At mile 22 I am like that 3 isn't going to happen but I got plenty of room to qualify for Boston under 3:05... But the vomiting continued. It never took anything out of me but it's not like the snot you can blow out your nose and keep running. By mile 24 I had thrown up over a dozen times. Half and full marathon runners who passed me that had been at the speech tried to stop and immediately I'd start running with them and tell them this was their race and to not slow down for me. And at mile 24, the 3:15 pacer who I'd had dinner with the day before saw me and I'm like let's just run it in together and I quickly left him... till I threw up again and I would throw up again 3 times in the last 2 miles and finish in about 3:20... Knowing good and well that a DNF will never acceptable to me...And every time, every time I got back to running I generated speed but stopping for the side of the road takes time...(it's a staggered race so the half marathons begin at mile 13, the 10kers at mile 20 and the 5k er's at mile 23.1) Perhaps my favorite moment was a sweet grandmother looking lady who was doing her 5k said as I was on the grass, do you want me to help walk you in...

After the race, trying to overcome the frustration with myself and my system, I smiled at the strangers who
were now friends and high fived them, ran one girl in who was struggling... But as I thought about it since the medication doubled last march I've done 4 long distance races with Kiana and 4 without her. In all 4 of the ones with her, I have not thrown up and I have placed winning my division or winning it outright. And in the 4 that I've done without her I've literally thrown up more each time once, twice, four times, over a dozen times today. Perhaps that's just coincidence... perhaps it's the universe kindly reminding me why it's letting me stay alive. As the media stuff shows, I am a better father due to cancer and that's the gap cancer filled in.  But still, I crossed the finish line smiling and was amused the medal literally said smile makers. And I smiled. Maybe these invitation will stop and people will realize that the Gusher marathon makes me nothing more than a one hit wonder...

A couple of the pacemakers were kind and said you earned your keep, they invited you to speak and you inspired a lot of people (someday somebody's gotta get that I perspire not inspire). I spoke about the gaps I had in my life, the gaps I've picked up in my life, finances and memory since this all started. But I took this invitation because I wanted to make sure that people understood that life is better if you share your gaps with people that matter. I'm not afraid of new things, life has forced me on me and I've signed up for others. And I never get to quit running cause I'd have to have one hell of an excuse to retire. But while, I've got it. I will run to fill what gaps I can in people's lives... Kiana's above all. And as I said at my speech and reflected on by having a song that made the Pocatello playlist... I am thankful for many things. I am thankful that I'm still standing after losing more fluid in that marathon than every race I've ever thrown up in combined. I am thankful that I am raising a little girl who is amazing. I am thankful that I got to take my first trip to Idaho to speak to people about how they are awesome. And whatever gaps I have even in marathon time, well thankfulness isn't one of them. I guess that's my reward from and at the end of this marathon and I'll try to listen to the pasta dinner speaker and enjoy it.

Monday, August 26, 2013

The Dignity of A Win

There is one small part of the Gusher marathon story that’s never been told. I threw up very shortly after the finish and the marathon director sent medical team who hung out with me while I was over the trash can and one the shipmates who had done the half hung out with Kiana while it happened. The EMT sat there as I was over the trash can and he said very little of medical consequence. While clearly keeping an eye on me, he said hey let me know if you need any more help otherwise, I’m just trying to let you enjoy the dignity of a win. I went to the trash can and threw up one more time and hung out over it… and well I’m sure he and anyone  who was watching thought I was hanging wondering if it was more vomit, it was to get my composure because that was one of the nicest thing anyone had ever said to me and I immediately teared up and managed to keep that down even if I couldn’t keep my digestion down. A few seconds later and in a cracked voice that I imagine he assumed was from the throwing up and about the medical attention, I quietly said thank you. And that kind statement was as good as the cheering at the finish line, as the presentation of the medals and as meaningful if not more so than the media coverage that would come out of it.

So today in court, a few someones texted me “so did you win?”  There’s been enough written about all this to realize that I am a guy who has a competitive side and have let frustration out in runs, races and gotten pr’s after a cancer diagnosis. Some have wondered if this is a vengeful side but I think the universe is clear on who you should let vengeance belong to and it’s not yourself. But if I’m challenged directly, as you can read in race reports, I don’t talk smack back but…but I do internalize competition to try to win. And because these have been court cases where the requests have been so radically different that there wasn’t much of a middle ground to take. I am a volunteer mediator, believing that reasonable adults sitting in the same room with someone to help redirect emotion can make better decisions. But both Kiana’s mother and her boyfriend when they started their court cases refused mediation (Kiana’s mother would eventually be at one and then after coming to an agreement tried to “appeal it” (not legally possible)). Being reasonable with unreasonable people… is at best difficult.  

Still in court, the judge reprimanded us all, explained that this was immature, that none of us appeared to be working in the best interests of the child and that cases like this were why he’d stayed out of family court. The hearing took less time than I do a 5k in and the judge said that I should be a better father than to conduct myself this way in front of my daughter and let the other parties know that they should have the wisdom to park across the street and not connected to my property (something that has been done since this incident). He wondered out loud why this was the 2nd or 3rd setting this had been addressed in (it’s actually the 4th or 5th.  With that said, while I have walked in nervous, I have never walked out frustrated at one of the legal settings despite it being in front of 4 judges, 2 DA’s, 3 policemen, 3 mediators. Criticize the legal system as you see fit but I worked in it for several years and while there have been some errors, I think over all, courts have a good batting average. Please keep in mind that’s coming from a guy who appropriately got fired for making memory mistakes in court which could affect legal consequences for other). But what his family or moral preferences were, I think the judge knew where Texas law stands and he summarily let the case be dismissed… which I suppose you could call a victory for me as this small claims court case has cost me no money and only time. But even if you “win,” in these type of adversarial court settings to me, there is no dignity in it.

Because I know, I know that if statistical realities come true about this cancer and if he and Kiana’s mother succeed in a longer term relationship (something that would also defy statistics but less dramatic ones), that he will be the primary male raising my daughter in due time (yes, that scares the daylight out of me). And even if I happen to be part of the minority that beats this cancer we’d be better off acknowledging that we’re stuck in each other’s lives… I believe that like the bad things in my life, my disease, my seizures, that they will need some intervention to be fully successful. I believe that like the good things in my life, the athletic achievements whether they be biking, running, or obstacle coursing, I’ll need directions from people more familiar like my coaches or better athletes. It is my hope, my prayer that this is where we go… to counseling or mediation or even just a conversation with friends instead of judges to try to re-establish incredibly shattered trusts and relationships. It was eery and comforting to hear the judge echo exactly what my previous blog said and what I hope some we will all be in the same joint page about that we should not be focused on petty things but on a child.

And then the friend who is the executor of my will, Todd, drove me home. And he and I discussed different viewpoints on the case and perhaps showing why he has legal authority in my life and why he’s the executor of my will, he said that the judge’s impression was that I had been morally at fault for how I carried myself in front of my daughter… And he also reprimanded me for losing my temper and being less than appropriate in front of my daughter. Removing someone by force from my property who’d been told not to be there multiple times… well do you really tell your child that force is never necessary? There’s not a single city, state or country in the entire planet where legal reality holds that as true. But still, the way I handled things that day was far far less than adequate, far less than mature, and I’ve said many times I’m not proud of it but perhaps my statement that I should have no apologies for it is too much.  But I dare to dream that now that legal settings are part of the past that somewhere in the future, the people who share part of Kiana’s household at different times will learn to be a better team. Or perhaps more appropriately phrased, we should learn to be a team period. I’ve tried to do it in things like having Kiana take an art and craft she got yesterday and while she didn’t think of it to have it be something she takes to mom’s house. And I do have an easier time doing it for someone who is her mother and I committed to loving till my dying day. But I’ve put next to no effort in doing it with her mother’s boyfriend so maybe it’s time to start that. While some of that will be as hard to keep down as vomit was during Gusher, I believe if we can do it, we will have a win towards Kiana’s dignity. 

Default Position

Today’s blog entry should be about one thing and one only, Kiana. Today was her first day of First grade. We spent last week preparing for it, going shopping with my Nicole, a friend who came and visited me shortly after this brain cancer stuff started and was visiting Austin again. We picked out Kiana’s outfit which she picked a long dress with long sleeves for her first day of first grade. The protective dad parts of me, of course, hope that’s what she wears for the first day of every grade, college, interview and every first date if she doesn’t decide to become a nun. And it was exciting and somehow both a little bit harder and easier to drop her off for the first day of first grade than it was for kindergarten.

The entry should be about how awesome the last few summer days were with pancake cooking, origami making, where she did a portrait of me in Van Gogh style. It should be about how we biked up and down a hill and I told her I'd just run next to her and turns out my trained endurance doesn't match up with her natural one.   It should be about how the way I made sure she got to bed on time was by taking her to a track workout and she did
1.5 miles while I did 3. And it should be about those things because that’s what my life is about. In life, in conversations, on facebook, we are what we do. I spend enough time on facebook to see that some people seem to spend their time and affection on exercises like running (thought there was this great article making fun of runners today, almost everyone who has pets and kids seem to spend a lot of time and affection on them (I was please to see Kiana’s mom today at school for the first day though not all surprised to hear that she was meeting the principal for the first time ever, but I was shocked to hear a few parents today express how glad they were that school was starting over so they could get a break from their kids), some seem to have enough of a passion or time for nothing else that all you hear about from them in life virtual or otherwise is about work. I’m a guy whose watched every episode of House, the West Wing, and Doctor Who but I worry about the people whose biggest hobby/passion is watching TV. And that’s what I’ve tried to make my life about, life and focusing my time on that which is worth loving the most.

But unfortunately, today instead of getting to pick up my daughter after school on her first day, I have to head to court to get sued in small claims court regarding a previous incident with Andre Domouchelle, the exes’ boyfriend (for more details see the blog entries and the comments as well, He’s suing me for under $400 and even as broke as I am, it was tempting to give it to him just to have him go away but the principle of it stopped me from it. I’ve referred to him before in here and there was a time where he was a guy I fond of, a friend who I traveled to different states and countries to play ultimate with, who helped organized my 30th birthday party, who helped me train for my first marathon, who was at the hospital shortly after this all started and whose parents house I stayed at in Duke. When it came out that he was having an affair with my high school sweetheart, if there’s anyone who could go through that and not have anger, well they are amazingly stoic or stupid. Frankly, there’s been times I’ve thought about paying him because the incident he’s suing me for, well it was fairly "therapeutic" and almost... almost financially worth what he's suing me for. And it says something about the legal system that police have told him he cannot ever be on my property again, the DA told him he has no criminal assault case to be made (he tried multiple times) and he wouldn’t even attend mediation, judges have told  him he cannot pick up my daughter from my house, and that he is the only specifically named as someone who cannot look at my medical records. I have irreverent friends as the jokes in here revealed and one said about today’s court date, “He came in second in all the other court things so you shouldn’t worry too much about it… but then again he seems to like seconds.” I smiled because it was funny but a lot less than it would have been a long time ago because  a couple of years into the divorce the emotions about it all are much closer to null and void. I think running, sitting with a counselor, sitting in the back of church and above all raising this kid continues to make happiness my default position and to naturally and/or systematically let go of anger. The Chinese have a saying that holding onto anger is like holding onto a hot coal to throw at someone, it just burns you in the process. And looking in the mirror today, I’d be lying to say that the betrayal of my brain, of my spouse and of this friend are things I’ve completely forgotten, they are memories that keep fading in the best way. I once said in here that those types of betrayals are the reason Dante reserved the lowest level of hell for those who betray their friends. Still, the best parts of any religion/spirituality/methodology to me is not about avoiding the bad but pursuing the best. Perhaps the idea that someday there will be hell to pay makes us feel better about injustice today but I hope I can focus on that little things like putting Kiana to bed and reading with her tonight shows that there are slices of heaven right here in the real world.

Another joke that’s been made is that my life is a mixture of Oprah and Springer. But a wise new friend said to me that to get on Oprah you only need to be doing the right thing by yourself and Springer requires two people being cheap. So I’ll go to court and try to stick to mere facts and not weigh in with emotions enough to where people are yelling “Springer, Springer.” And this court hearing, unlike the custody ones, is really more about annoyance than any worry since the worst things that could happen is money lost, a good chunk of change for a guy who lives off a $2000 a month insurance, is still cheaper than a trip to Duke or an MRI or what I’ve paid in medication since then. November 2010-August 2013 and still there has not been one entire month where I don’t have a legal or medical appointment related to a cancer I did not sign up for. Even when people talk about the opportunities like Pocatello or the Spartan, I’ve offered to trade lives and no one’s taking me up on it. With that said, trying to focus on the positive, I don’t know how today will go but there is nothing currently scheduled for all of September!

I am about to get on my bike and go because the letter I was served with was that if I didn’t show up, the default position would be that the judge would state he was the winner of the case. But trying to focus on what matters, and to create some distractions as the morning passed by I walked to HEB and got some new hair product Kiana’s been wanting and some chocolate and we will do a new art and crafts that’s been sitting for a while. I don’t know what the judge’s position will be today. But what I do know is my default position will be to be a good happy athletic father (to a girl who I hope keeps making her default position to pick long dresses) which is what it is and what it should be about.

Wednesday, August 21, 2013


In case you haven’t watched the Spartan video,, which unfortunately is still less watched then the Gusher marathon youtube video of my gut hanging out, you may notice what I’m saying. You  may notice the shirt I point out, or those who know that I’ve been struggling with an ankle injury can notice exactly where it happened on that mud slide. What I notice above all is that the left side of my face is drooping. That happens far more dramatically late at night or after marathons or races where I’m tired and others have noticed it (some have talked to each other about it, the best have talked to me about it). Honestly, in the articles and the videos, some of them I’ve noticed my deficits more evidently, realizing how much more I say things like you know or seem to be trying to focus on what I’m saying. One of the articles pointed out what others had as well, that when tired I also slur my language more. The brain has issues so but does the actual head which is where the muscles are torn up primarily on one side, making some of the functions like smiling and talking that require both sides to symmetrical to function less adequately.

I’ve been invited to the Spartan beast championships in Vermont in September. I am going to go and I imagine like the sprint and the super it will very much kick my ass. But I’ve been trying to do more upper body working out (read more as doing some). I don’t have money for a gym membership and I’ve seen some more athletic friends who say the gym is their playground and so when I take Kiana to the playground, it becomes my gym. Turns out anything I can cheat with my legs, I do really well on but anything that’s strictly upper body… well there’s no cheating. Because when you’re purely a runner like I generally am, your muscles are even more disproportionately spaced out than they naturally are between legs and arms.

I still feel awkward at any comments or compliments calling me inspiration. I still dismiss them uncomfortably reminding people that I’m perspirational and they need to wok on their spelling. But the simple truth is that I’m not really as proud of my life right now as I am embarrassed  about the previous part. There is no human being who would not appreciate being commended for hanging out with his child or for exercise or for combining them but me, the one with a screwed up brain, knows that it should have happened long before cancer. And when people commend me on those things, I consider it about as high of a compliment as well you had a healthy breakfast (we’re all supposed to have healthy breakfasts!).

All I am trying to do is do what every good person does, take care of people they love and exercise. I am trying to do to the best of my abilities on those. This month, at 33 years of age, I just lived the longest I’ve ever lived anywhere in my life, 8 years. I am hoping that I help Kiana’s life have that sense of home and belonging much earlier in life. And when she spends two weeks away at her mother's house for a summer visit or now that school starts again where she has to live in two houses, one all the time except for every other weekend, creating an asymmetrical concept of home, well, I don't know if I spend more time thinking about the beauty of the George Clooney lifestyle or letting my mind drift into how I should have paid more attention to family in the first half of my life. I have friends who have lost over a hundred pounds and they also get some serious accolades and they carry around  a picture of themselves at their fattest to look at when they are tempted to eat too much or the wrong thing. I am a guy with memory problems but there are reminders in every room in the house, some which shout out loud and some as subtle as strategically placed magnets to remember that if my life is going to be asymmetrical, I would like Life Part II, the part after cancer, to be the better part. My face may droop more on one side when I’m tired or smiling but if that's my only option I’d like to make sure that I’m smiling enough to where it tires out enough to show.

And I want to do this, not because I survived cancer, but simply because it’s the right thing to do. I am speaking at the Pocatello marathon in a week and half (closer to ready for the speech, still intimidated about both that and the marathon). And the story I’m placing the most emphasis on is not that hey I put off brain surgery to run a marathon or I won one with a stroller (though those are being mentioned), it’s my first stroller race was a half marathon with my mom in which even though she was the very last finisher, when she finished I was as proud of her that day as the races she’s watched me win (  ) . These are the heroic things to me. There was an article in psychology today about hero worship in Lance Armstrong for being a survivor and how we condemned him more for things other have done because we’d placed him higher. While I think anyone who wants to judge or condemn me is well within their right to do so and while my frustration with Armstrong is the cover up more than the sin (and I’m okay with him or I being held to some level of higher accountability because to him who much is given much is expected), I have rejected the label of hero or inspiration all along because at the end of the day, while I have a rare cancer, I am just a damaged human. As I prepare my playlist for Pocatello, one of the songs on there is the song hero from spiderman. because for all of us, our closest friends will always be those who see our broken humanity and love us anyway. I don’t raise money for things like Livestrong or braincancer research to be a hero, it’s to help channel the teamwork that will come out of that. They lyrics are:

And they say that a hero could save us
I'm not gonna stand here and wait
I'll hold on to the wings of the eagles
Watch as we all fly away
Now that the world isn't ending
It's love that I'm sending to you
It isn't the love of a hero
And that's why I fear it won't do

I hope whoever likes me would like me whether or not I’d gotten cancer and had gotten to where I am just from growing up, not waking up in an ambulance. So, if you have enough boredom or insomnia to read this, know that today I made pancakes for Kiana and I took her to the playground and the track yesterday today where it was just her and I playing/exercising. I also ran for her back to school vision appointment and as we found out last year she has perfect vision in one eye and far sightedness on the other. Luckily for those kind of asymmetrical vision problems, we have glasses. For missing some things like I was, I am hoping to teach her to focus on the vision correctly all along. And every person who makes a pattern of eating healthy breakfast, purposefully spending time with people they love and exercising, you’re a hero in my book. And if you’ve done it regularly… well then you’ve lived your life more symmetrically than I have so keep it up.

Tuesday, August 13, 2013

A Mile In Their Shoes

A friend once said to me, before you judge someone, walk a mile in their shoes. They probably can’t catch you if you’re a mile away and they have no shoes on. I just got back from four miles of track workouts in 105 degree weather and it hurt. Two summers ago I stopped working out because I was bummed out about the divorce. Last summer I was cycling not running because I was training for the Livestrong century and cycling is literally cooler during Texas summer… This summer I don’t have anything going besides running and I joked to one of my coaches that he had to give me an excuse next summer to not run in this heat. He said he’d bop me on the side of the head so that I could say coach is too big of a bully to come out to the workouts. And then he gave me a ride home. You gotta wonder why I only use these guys for my body…

But the main reason is that they are friends who encourage me for each race (sometimes for me the best encouragement is heckling). . The next marathon, the first one since the Gusher win, is only a couple of weeks away
.I’ve been training slower because anyone who can keep normal speeds during summer has my absolute respect and admiration… or maybe they just have my judgement while I have their shoes. So while it may sound reasonable that because I’ve run 7 others or that because I’ve been in various interviews (the one for the Spartan race came out yesterday, for other things that I take this as normal, I do not. I am nervous about this marathon for a multitude of reasons. One my cross country coach and modern running partners would tell you, I’ve never been a good downhill runner. Two I have been training slower. Three, I am speaking at the dinner and I can’t honestly decide whether the race or the marathon has me more intimidated.  The video interviews are well edited and I said everything in them but somehow, if my memory serves me right, I think that they edited a lot of my blabbing out. This is just me with all the people in front of them. Though some of the inappropriate jokes that never get into the interview will almost certainly make the speech (not all of them, we’ll keep it PG). But will people really think that a guy who thinks the meaning of life is well life and the meaning of running is well running is really worth hearing? (If you have any great tips on public speaking now is the time to email me)

But somewhere in the back of my mind… or perhaps in the temporal lobe… if this blog is as confessional as it appears, there are days where I don’t quite understand the compliments. I always appreciate them but the simple truth is that I’m embarrassed about being commended. I should have always been running with Kiana and having her as my highest priority. There are very very few people in the world who didn’t enjoy exercise as children or hanging out with people they love. How do we lose that or not make it a high enough priority?
As I sit through them, I still have no idea how I did it. And trust me I judge myself and walked in those shoes and can’t justify it. I know there were times for my parents and family where it had to be done out of financial necessity but that was never my excuse. It was because I was taking off to play poker with the guys or play in this sports event etc. I am not saying that people shouldn’t do that when it’s a joint family but if you do it too much… well when push comes to shove, if you decide to try to pull them in, it may be too late. My mom was a single mom who had to work and I have no vague notion that she was there every moment but the pattern was that she was present.

So, people have wondered if all this attention has gone to my head and I’d tell you my closest friends would realize that it has not and I’m not a big fan of things that go to my head anyway. My birthday was last week and I did exactly what I do every year, which was nothing and everything, enjoying one more day and on that particular day helping some friends move. I got some great cards and some donations to the brainpower 5k. But perhaps my favorite gift in a long long time was a friend I’ve made in this cancer journey because a friend of his died of cancer. He appreciates my humor and while it’s bothered a few people that I want to be cremated and flushed down the toilet when I die, he’s someone who knows that not taking death too seriously is what helps me take life more seriously. The birthday present he gave me the best toilet seat I’ve ever seen.

I still don’t know what to say when people say I’m inspirational. I try to defer that I’m mostly perspirational. And as I read news that’s frustration about universal health care stuff that continues to be delayed… all I can is that I’m trying to take care of my health as best as I know how by taking the pills I’m supposed to and running and raising a princess up as high as I can in the air and as high as I can in character. And while I’m not na├»ve that someday she’ll go through puberty and growing up and life won’t be as simple as arts and crafts, I’m going to enjoy those moments.  And the inappropriate jokes I tell on here ( will make me cringe if I ever get to hear her say anything like them, well I hope that if I ever really do end up with parts of me in the gutter… that I’ve contributed something to keep her mind from going too far into it. And no matter how I or anyone judges me… I’m going to keep walking a mile next to her shoes for as long as I can. 

Tuesday, August 6, 2013

Good But Spotty

At the last neuro oncologist appointment as we talked about a variety of things them, among them my memory function. The neuro oncologist pointed out that my memory was "good but spotty". For some reason that phrase stuck with a way to view my specific memory, life,  and perhaps those things in general... He mentioned it because of a variety of contexts but mostly because I remembered that the first time I met him wasn't at an appointment but rather at the brainpower5k. Part of the reason I remember meeting him was because it was a race I'd gotten lost in and so I was frustrated with that and we all tend to remember bigger picture details even if not smaller details during times of high emotion.  (By the way if you donate to me today August 6th, my brother will hook you up with a dozen krispy kreme donuts,

People are intrigued by what I do and don't remember. I miss a lot of little things which of course create problems, especially in legal employment. The memory functioned previously mentioned here before that frustrates me the most is the fact that I don't remember faces and names as well (I used to be fantastic at it). Facial recognition is a complex issue apparently  ( For me, it takes longer for people's faces to sink in than it used to During the ESPN interview I tried to explain it to a couple of the guys but they didn't quite get it as many people don't because they think I don't remember names (I struggle with that as well) but it isn't that I don't remember names, it's that I don't remember someone. I'd definitely not volunteer to take someone out of a line up. At the last brain power meeting, the two people in front of me, well, can I say that I'd met them before but I didn't realize that at the meeting (one of them said hello to me in the lobby and I've gotten good at striking up conversation to put together the pieces of how I know them). After we talked I started piecing from the conversation how and luckily one of them added me on facebook after and we took a group picture after. I studied and I'll get them from now on, once they sink, they do sink (yes I know this all sounds strange) but if I studied faces of people the way I need to on facebook or in pictures for them to sink in, it would be at best creepy. Luckily most important people you see regularly and/or we live in a digital age. People have asked why I don't just tell people when I meet them but when you meet people you have no clue how long they'll be part of your life or the next time you'll encounter them and it seems an incredibly awkward moment. The guy from the interview that I recognized was because someone had taken a picture of the camera following me around and he was clearly recognizable in it. This has been a little more frustrating with the media material since now people have recognized me and I don't know whether or not I've met them...

Throughout this journey, as I talk about the reason I accept limits from my doctors about driving, lifestyle changes (no more soccer, caffeine, scuba diving  etc ) which many patients ignore and lie to their doctors about, (and if you think a guy who was the first in his family to graduate from college and put off brain surgery to run a marathon accepts limits well...) is because with each of these limits, I've decided/been able to spend more time and focus with Kiana. I am more than a little embarrassed that people are bragging about my parenting 1) because it's just something I should have been doing and 2) it shouldn't have taken cancer for me to get better at it. It took me much too long to recognize Emerson's wisdom that the miraculous is in the common. While I appreciate people commending me painting my toenails and brushing Kiana's hair, I can count on one hand the number of times I changed her diaper when her mother was around and I didn't have cancer. As I do some fun things with Kiana, people have commented I don't remember if my father did that or I remember my mother doing that or I don't remember a lot of life before I was insert certain age here (for most humans earliest memories are about the age Kiana is now). I don't remember everything my mother did with me... memories of all of our childhoods are spotty but if there's one thing I'm trying to emulate from my mother is that the pattern she had was being there. I grew up poor so the financial limits are what they are and rarely bother me but I want to know I was there with Kiana as much as I could be and that there are some great parent/child activities, friend/friend activities that are ridiculously good and cheap and not spotty. And my attitude continues to be if everything goes right and all I did was hang out with my kid some more, or if everything goes wrong and all I did was hang out with my kid some more, to me that's a win/win.

So I keep trying to focus on the positive, acknowledging, accepting, while frustratedly fighting that just become something is spotty doesn't mean it's not good. While in Chicago I picked up a painting from Van Gogh that sat in my house for Kiana to try to replicate. We spent hours on it, practicing some of the things she would do with q-tips or with her finger onto the final painting and we were pretty proud of the results. Van Gogh's impression/post impressionist style wasn't clean or trying to replicate reality it was kind of bending it while reflecting it, shifting it while portraying it, trying to get it to have some good spots. While Kiana will find her own way in hobbies and pursuits, she was proud of her painting and it now hangs in her room.

Still, while Kiana's gone the next two weeks with her mother so I've been trying to do some new things and get some things done that were neglected when summer was at its best raising my kid all day. One of them was two days ago, I went to go do hill repeats on a trail run. After those Spartan races so thoroughly kicked my ass, I knew that doing hill repeats on trails would be a different game. I did 5 miles of them and for the first 3 I took a different strategy. On the first one I stayed as far to the right as possible, on number 2 as far to the left, on number 3 as close to the center and on the last 2 followed two different people trying to learn from their techniques and 5 miles of "technical" running, let's just say it also kicked my ass. Running from this rock to that rock, afraid of falling, trying to learn how to do it better, knowing that unlike road running, it wasn't ever going to ever perfectly predictable, trying to figure out which spots were the good ones. Though I gotta say, I couldn't decide whether a hill that is so tough to run up or down is correctly or incorrectly called the hill of life.

I had lunch with an old friend who said she tried to take the approach of each day very possibly being your last (waking up in an ambulance and taking pills everyday will do that to you; speaking of memory that may be the most useful advice that has been provided to me by those who have to take significant medication regularly, I leave the last pill thing open to be reminded if I've taken it and when it's time to take it, I have something set up to go to my phone, email, and Kiana's ipad simultaneously wearing suspenders, a belt, and a bowtie ). Anyway, they said they tried to for 3 months but they just couldn't do it. They'd just get caught up in the daily acts of living instead of the living but that they haven't given up trying. I didn't know what to say other than as long as you don't give up on the trying, you haven't given up on the living. So even as spotty as some of it has been, I think my life, friends, family, has been very good.

Thursday, August 1, 2013

Behind the Camera

I lead a strange life... if you read this blog and don't know that... well let's start a "my brain doesn't get things quite like it should" club. But this week, I had camera following me around for two different causes. My mom was here for part of it, watching over her while I sat there and the vast majority of the time that Kiana was in front of them was only when she was in a stroller or when she was playing with me. One of the camera guys was remembering the time when his daughter was a few years old and let her see some of the things we did together and she was fascinated being behind the camera a lot more than in front of it. I've joked often that if this journey ends up getting Kiana to be a neurosurgeon it's totally worth it but maybe it'll make her into a videographer.Which is fine as long as she doesn't go to reality TV... (that may very well be what this blog feels like.)

The first shooting was the last part of the ESPN thing that we started back in Duke in April. Now they were fairly frank and said that there are times when they film things and decide not to air them for whatever reason so maybe nothing will ever come of it. The second was something we had decided to do and started long before any newspaper had carried the Beaumont story or before Beaumont happened and it's for my hospital a way to provide guidance for people that I wish I'd had when this all started...  And while, it's just a short thing for my local hospital that we had begun before I'd even heard of the Gusher marathon but they wanted to also talk about  Kiana and running since those may be the only things I'm getting mostly right in my life. We ran most days for it and it feels like because of the stopping and starting that I did 4 days of interval training. None of these things have I ever gotten paid for which the people who make them get paid for it... and as I write that, realizing I survive with a long term insurance, I am realizing exactly how much is wrong with my brain ;).

In both shoots like in all of life, Kiana steals the show. And of course I'm a guy who talks too much and I have no clue what they will edit it in or out. But there were some things that E60 asked that I've gone back to think about that no one had ever asked. One was what memory was... and memories are of course specific and if I haven't been clear, my harder time is not recalling memories, it's making them. If I make them, I can get access them, it's just gotten more complicated to make them but if I don't make them... well it gets complicated. The other which I'm sure was just the interviewer being polite was that he felt intimidated to interview me because of reading this blog. Another thing that I was shocked/not at all surprised was to hear myself say that I was glad I got cancer because... if I hadn't would I be this focused on parenting. And I admitted there and will do so here that I'm pretty ashamed that I rarely changed Kiana's diapers or even run with her once in her first couple of years of life. I might have missed more of Kiana's life without cancer than I have with it, no matter what age I die at (I don't think I said it that well to the camera.) Another surprising question was why do I participate in these interviews... Obviously this blog will show you that I'm not shy but I also think that sharing some of our humanity... makes well being human a little bit easier. But while I can joke about a lot of things (I was told in the interview to not be so glib), I owe my life to lots of people, medically, emotionally, financially, spiritually. There's no way to pay it back and I guess  hope these interviews for Duke, my local hospital or livestrong or the money I raise for brain cancer research somehow pays it forward. They asked at the end of it if there was anything I wanted to say at the end but I'd struggled to keep up with them and had nothing left at the end.

Appropriately/oddly enough in the middle of it all I went go to see my neuro oncologist for a regular appointment. For the first time ever he wasn't wearing a bow tie (that is so cheating since that's what I use to recognize him cause bowties are cool). When I collapsed last year ( we did blood work and doubled the daily medication and tripled it on days of sporting events. The medication in the higher dosage did and does make me throw up without the sporting events but I threw up after/during both marathons this year. However, there have been no unconscious spells since then so... we're going to try doing the regular dosage for the next couple of events and if nothing happens that will become the new norm. Which is exciting. I love my doctors for many reasons but I've said it before and I'll say it till my dying day, they've never been trying to just keep me from dying, they've been focused on helping me keep on living.

Both shoots decided to do some of the running during sunset. I'm a photographer and know that there are some lights that you can only catch at sunset. Oddly/appropriately enough on the speaker came on, Elton John's "Don't Let the Sun Go Down on Me." I believe this cancer in due time or a seizure at the wrong time will eventually be what kills me. I hope and so do others that I'm wrong on this. But in the interview I talked about how we played a poker game at the hospital when this all started and how when the doctors couldn't decide whether or not the surgery risks were worth it, that we had a poker game at the house to get friends to weigh in. Someone sent me an article about how you should be okay if you lose with a good hand in poker because you made the right bet and chance is not completely predictable. I flipped that and said to myself that maybe true but if one end up winning with a bad hand... one celebrates defying odds. The videos will have some sunset on them for artistic/light reasons etc. But today, well, I let Kiana sleep in and then made her pancakes, strawberries and ice cream for breakfast for putting up with cameras in our house. And she smiled and the only camera that caught that was the one on my iphone. And this cancer may be the sunset of my life in due time but it's given me some good sunrises with ice cream and strawberries along the way.