Thursday, April 2, 2015

Friends with the Monster

While never mentioned before, today's title is actually stolen from a song that has made almost every playlist in races for a while , Rihanna's Monster. I am not quite sure what it says that so many of titles come directly stolen from songs (with that said, it's because I was listening to it as I'm working on the Boston playlist so if you have any suggestions...). It's a strange frame of thought to try to make friends with the monster that lives inside of my head, a cancerous brain tumor that people expect me to be happy about is stable but those monsters in the closet or under your bed that you fear as a child, you don't fear them because they are constantly bothersome but because you fear they may pop out at anytime unexpectedly and then well that bedroom you called yours suddenly changes owner much too quickly.

I have a friend with a tumor who I've written about before many times. He went into hospice care much too quickly and I've received messages from people in his life regarding all of it, one of them literally the moment before the ESPN interview was going to start last Monday which sure kept it in perspective. He's a friend who beat me in a race once upon a time at Duke less than two years ago and has now stopped treatment after it was proving less than fruitful and the neuro oncologist we share said to the family that was the fastest they've ever seen the tumor grow... I think he's a far better guy than I've ever been and in these helpless moments you don't know what to say or do and wish there were moments you could trade places. This is probably the hardest cancer change I've had to take so far for many reasons: he's also a father of young children, he's a man of solid character but among those reasons, this guy beat me in a race and I'm no olympian but I'm certainly not known for being slow. PBS is currently doing a good series about cancer where they call it the emperor or all maladies... I suppose that's a more clever title than the one I would have come up with which would have had a few more swear words in it. We highlight the stories of success but it is perhaps when people who were genuinely healthy and young are robbed so quickly of life that keeps me motivated to work hard at the research again cancer. The picture of he and I at the front of a race has hung on my fridge for many reasons for a long long time and will be there even longer. I would say it's one of the few pictures in my house that's not family but that's not true because he's my brother.

And it is that and that alone why I've continued to let parts of my life be in reaction and proactive action to the monster, a vague attempt at being friends with it. ESPN was here and it was actually an absolutely human crew covering the human interest story... Tom Rinaldi, the guy who interviewed me before was incredibly apologetic about that it had dragged out so long and had some of the best questions I've ever been asked (though I assure you the answers were as bad as usual). He scored some points in the way he interacted with Kiana and the way he switched gears between asking me questions and asking her showed that while he might be a serious interviewer but would have been able to be a kindergarten teacher (I sincerely question which one of those jobs makes a bigger difference). The camera/sound crew somehow managed to come alive when off screen and become invisible when filming. They scored serious points when my mom made them dinner and that unlike the supposedly good father and son they were filming, they actually kicked her out of the kitchen so that they alone could do the dishes. And the producer asked me some questions in English that I was supposed to answer in Spanish which was confusing for my brain and tongue but hopefully I said something worthwhile. She actually had seen some other pieces I'd been in and previous filming and her simple pointer of this isn't a live interview you're allowed to take a second to think tip helped me be focused and as at ease as you can be under those circumstances. Or it might have been the fact that when the crew was setting up I went out to run right before listening to various songs ending with the last one being a great hymn. And while running is my therapy, humor is my coping mechanism so I couldn't resist when they asked me to try on what I would wear for the outfit so they could check the lights with it to come out with an outfit that for some reason they asked me to change while fully acknowledging they couldn't pick my outfit for me... I changed mostly cause you know my mom might watch it. I think this was the first crew that completely realized that I do this because well I hope in sharing it, it will highlight the right causes and the right people (which are not me).

Though while the media is certainly a monster of sorts to me, I've struggled that different ones mention different things and feel like they gloss over certain facts or details which my OCD wants to inset. But someone finally offered an explanation about tv pieces or movies that are about true stories that made it make more sense to me. They were talking about Monet and said "You don't fact check Monet's Water Lilies. That's not what water lilies look like, that's what the sensation of experiencing water lilies feel like. That's the goal of the piece." And somehow with how I and Kiana felt around this crew... I think they'll get enough of the facts to get the feel right... when it airs in 2024 at 2 am :). Still they seemed to be the most understanding about why I rarely watch these things. 

But ESPN was a hassle in someways of course but I hope that is the final time my house looks like a
reality show. I had other weekend plans that were the real joy and point of the weekend. Saturday was actually the first time I ran longer than a marathon in one day because I had gotten my last 20 mile Boston training run and we ended up running more than 6.2 for the filming... they were apologetic about and said well you know part of that was your choice to which I replied "Yeah but it wasn't the 20 mile training run." But Sunday's running was the best race yet... You know I thought once upon a time the race I'd put off brain surgery was the best one, and then the one I won with a stroller was the best one but the one with Head for the Cure this weekend was. For the 3rd month in a row my mom, dad and Kiana and I all did a 5k together. For the 3rd month in a row each of them got their fastest one. But for the first time ever each one of them placed in their age group (Kiana 2nd, mom 3rd, dad 2nd). It's little moments like that which make me think that maybe the universe will be kind enough that for at least a little while longer my best race is still in the future.  We had an interview for that as well if you're into that media stuff. It's a nice question to have no answer to whether you're more proud of your parents or your child for working hard at getting better. Still, there was a time when seeing the overwhelming odds or the low survival rates where it was temping to put my head in the sand and I'm thankful for the people who helped me keep looking forward and up the way Kiana did on the last hill of that race.

Still, the best parts of the weekend weren't ever when any cameras were rolling. There was easter egg dying and hunting after they dried... Turns out if you have a few spartan things set up in your backyard some of the hiding is easier and finding is harder. And turns out moments with flowers and Amy's ice cream and moonlight and being out on the deck make you just keep appreciating life. I've never had a good day but I've also never had a totally bad day that I can think of... so you try to balance it. In the latest Spartan piece, I talk about the beauty of signing up for challenges so that the ones you don't sign up for are easier to be relieved. This actually was a tough thing to see myself say as someone I was visiting with cancer who was in a lot of pain was asking in a less than happy fashion about how I didn't warn them about how much pain and misery this could come with. They said I probably liked the pain since I sign up for marathons and to crawl in dirt and under barbed wire. They added that crawling in dirt was where they were going to draw the line. It was an awkward moment for me but I gave them a hug since you know sometimes even us non huggers know that the only way to deal with the unexpected is to hug it out. But I am honestly not sure how hugs feel on the receiving end with friends who know that they are past the point of treatment being available... but on the giving end, I'm trying to scream with the squeeze on these arms that they weren't alone the way out. 

And so I get back to dealing with becoming friends with the monster, watching my doctors come out on Sixty Minutes about how we have finally made some progress with a more advanced form of the same type of tumor I have. These are not generic doctors, those are my actual doctors, the one whose hands I placed my life in. It was pretty emotional to watch. They had actually sent me the same study before but it was interesting to see it portrayed by other patients and the narrators. Watch the piece for a better understanding but they've finally gotten the immune system to attack the tumor by injecting people with a modified polio vaccine. I used to volunteer for a Post Polio organization in high school so I had a little bit more awareness of how it could work because polio like this tumor only attacks the cells that are in the brain and spine. Thing like that make my heart echo the sentiment that we maybe at a tipping point, a through shared from someone 6 years into this went-from-stage-2-tostage-4 friend whose on an experimental treatment that like this one only recently became available. I'm still a betting man and I know the odds are still stacked against me but this is the hand that was given to me and I'm glad I'm still at a place where I might have a chance to win and not have to fold. Who knows how it'll turn out but somehow it felt just right that it came on immediately after Duke made it into final four at March Madness... This is the first time they've made it since before I had brain surgery and so maybe they won't win it all but like their medical team, they've had past victories and are closer to a new one than they have been in years and like my parents and daughter's PR, progress matters. Like the obligatory I live in Texas so I have to take a picture of my daughter with bluebonnets in the spring, it's comforting to measure a new season with happy signs of life even if it can't last forever. 

And I am honestly finding new hope... maybe it won't be in time for me but I think we have a greater chance of getting there. Speaking of time, obviously it's because of my situations but I've bfileeen fascinated by the covers of time magazine that have echoed to me. We mapped out the human brain for the first time ever a couple of years ago and it was on the cover and the honest thought I had was well... yeah I'm definitely not beating this if we're just now figuring out the organ, how can we understand the disease. When uninsured that Time covered the Obamacare bit from a critical standpoint in the longest piece and the revisited the entire plan after the writer had gone through some health issues definitely created his view point to see a different angle. And one of the most recent cover of Time is two women with brain cancer and how they are doing very differently... the highlight is obvious about different places and treatments which is a critical point to, well, criticize... but there's also the reality that there's a gap at all is a good thing because before it wouldn't have mattered where you went. But if the magazine does a good job of measuring the passage of Time, I'm glad to see what the covers were and are because they are measuring progress and hope. I guess I'm old enough to remember that technology and progress use to move more slowly but my daughter has more information at her fingertips on her iPad than the president did when I was born and I'm not that old so... things can move quickly and perhaps I'm naive but I dare dream it will move in the right direction especially in the health direction.

But I'm not just daring to dream... I'm affecting in which ways I can but perhaps one of my favorites just occurred for the 3rd year in a row where I spoke to a bunch of premed students in organic chemistry at the University of Texas which will soon be the place where the first medical school is launched in the US since before I was born. I made jokes and my main point was to get them to sign up for the Longhorn Run which Kiana and I have done before. Still, somewhere I hope that the ones who become doctors or the ones who don't realize that exercise for performance or for fun or both health health and humanity to stay linked to the core.

So today I go do some hill repeats like Kiana did yesterday after swimming 300 meters. She's part of a school fundraiser and so I gave her incentive to work harder by saying I'd contribute more for extra hill repeats and it was the most expensive workout of my life. After my hill repeats tonight, I'm going to a happy hour with the group where people will talk about heart rates and repeats etc. and talk about the monster that training can be sometimes and that's all right. But, Kiana waved at me in the middle of each lap in the pool yesterday and high fived me in the repeats. So she's a long way from seeing exercise as anything other than just fun. That may have been my favorite part of the interview is that when they were talking to me they asked and got thought out and thorough answers about the why of running but when asking her the same question, she just said it was just fun to stay fit and had no more to say. So here's hoping I keep outrunning the monster that I've associated with running but much more, here's hoping Kiana realizes it was always her friends and stays with it every step of the way. 

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