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.

1 comment:

  1. Oh Lord my favorite running slut can WRITE TOO! Thank you for sharing this. It takes some BIG wakeup calls sometimes to set our parenting straight. I love your honesty about that. <3