Tuesday, March 5, 2013

A few of my favorite things

I like singing and dancing. Let’s just say I’ve done a lot of that today. I suppose I should rewind a few hours or days. I have made a habit of scheduling my medical appointments after athletic events because I figured if I am going to be getting a measurement of the system, I might as well do it after I push it. But if I go back a couple of years, in that incident where I put off brain surgery to run a marathon (I’ve done a few interviews but this one will likely always be my favorite, http://www.youtube.com/watch?v=X5cKt9vBeFA particularly that moment where Kiana and I are sticking our tongue out at each other). There was one MRI that my doctors and I agreed served no function, we were doing them monthly between the diagnosis and the surgery but we didn’t do the one in February 2011 because we’d done one in January and the surgery was going to be early in March and shy of waking up in an ambulance the date was going to be based on the Livestrong marathon. I’ll never get to live that one down and I am not sure I am ever going to get a pass on not running after that but for the last two weeks before the marathon there were no appointments, no distractions, just the focus of the race. The 3 marathons since then have all been followed by medical appointments… and the Duke 5k will be as well but this past Sunday, I did a 5k that was just to set the benchmark of how to train for the Duke one and this Saturday I get to do my first marathon ever pushing a stroller (probably the only one). And so I’ve been focusing on focusing. The ability to hold my attention and memory on things isn’t what it used to be but something has gone right over the last couple of weeks because my Lumosity scores have been going up, actually higher than they've ever been! We tried ADD medications once upon a time but they didn’t work because the problem is structural not chemical. I think chemicals matter and structure matters but I still want to believe one of the mantras from Livestrong matters, attitude is everything. 
Anyway, the 5k on Sunday, my first 5k since October was my best, 17:54 on what felt appropriate, a new course, a Lion’s golf course. Lance Armstrong was there and while we’ve met before… and while I’ll always be grateful that he set up Livestrong… me, the guy who rarely feels awkward, didn’t know what to say because … well because I didn’t know what to say. But it went well noticed by me that so far March has just been annual check ups and no unwelcome surprises!

Monday I did my first MRI since June and I can’t tell you that I’ve missed these things. It occurs to me that this is one of the few things that I’ve never ever documented and then I realized why. When I asked they said it was a violation of HIPAA (healthy privacy rules) but they let me take a picture of the machine without me in it. I cried waiting for the test because while I’ve lost a lot, the one that’s worried me the most forever is that some judge really will think that I should only have supervised visits with my daughter because of two ambulance wake up calls both over a year ago and focal seizures, the most recent in December. Following advice, I grabbed an extra copy to hand over to my ex. And then I sat and waited and waited and waited and waited and waited and waited… as I joke in that video at the beginning of this, it’s not the suspense that’s killing me. My doctors usually take a couple of days to get back to me but showing how awesome my medical team is I got a call and documentation from them today. Obviously what gets put into medical records is different than just the conversation between patient and doctors since those take 30-60 minutes and documentation is at most a few pages. But the Duke guys once upon a time told me to keep running and let me put off brain surgery. All of my doctors have not joked around with me at first but eventually they all have and I knew today that the latest addition to the team had finally understood me when as they let me know they were sending over the medical records, one of them said, “I’m not sure I can say your mind is stable from the way you run but everything on the MRI is.” There might have been a little bit of crying then too and then I headed over to Kiana’s school where the days she has started with me all have perfect attendance, her grades are still high and was comforted by that the two things I always ask about, can I keep running and am I fit to raise a kid, well, I still have the Universe’s blessing on them. I might have been singing I could have danced all night and done a spin around the stop sign before the school and gotten some strange looks. Hey, if I get to keep living, those looks are looks I can live with.
I went to the final session of the wonders and worries session parenting group tonight. Kiana had looked at my MRI with me yesterday. And my ride asked an intriguing question… do you do these events just to look good for your custody hearing? And the answer, may it be completely clear I went to all of these type of events long before the custody was up for debate. And I go because the human touch is a whole other world. I run with a group not just because of the coaching but I love the race reports for the human element not the biochemanics. Livestrong has been criticized for not funding for more cancer research but I don’t care. I am raising money for that for Duke and the Brainpower 5k but I’ve also raised money for Livestrong because both the science and humanity matter. And to me, the guy whose biggest worry on the hospital bed was not leaving his family broke, there is no progress that I’m more proud of than realizing that the humanity matters more than anything.

So tomorrow my attorney gets handed some things to pass on to show that yep I’ve got cancer, that perhaps the fact that I’m running a marathon with a stroller shows some part of my mind is not stable, but that the love for Kiana absolutely is. So anyway, I did some dancing and singing. And like 2 years ago, there are no medical appointments after and I choose to have some faith that my medical condition is stable enough to where judges are not going to change Kiana's life due to some of my limitations.  This weekend I’m going to run a marathon pushing Kiana. No promises on results, you know I’ll be leaving it out there and nothing shy of an ambulance will stop me from getting a cross the finish line. I've gotten people who have said I've gotten them to run more, to exercise more, to do their first marathon, to volunteer more. That all feels incredibly odd. But today, someone commented today that I inspire them to love more which may be the nicest thing anyone has ever said to me. Anyway, Saturday, tt’s the gusher marathon and guess what, when I get across that finish line a half second behind Kiana, I’ll be gushing. 

1 comment:

  1. Sending you a note of support. I have a runner friend who is dealing with a glioblastoma diagnosis right now; sending support to both of you.