Friday, April 5, 2013

Dead Wrong

The media thing continues… oddly enough the local paper covered me after most of the international ones ( I like the fact that there is no mythology that I never blinked being created because frankly that would be dead wrong. A cursory reading of this would tell you that I’ve thought about quitting a few times, way too many in fact and that without help, without great doctors, good counseling, without running without friends and family, I would have ended up dead and wrong. When I was a complete mess, friends suggested I get counseling, go to church, get laid, get high, get drunk, get back to running, start smoking… let’s say I did some my mother would be pleased with and some she’d be less than proud of.

It has been an odd week dealing with things however that are dead wrong. An image of me was circulating the internet saying that I was a girl using cannabis oil to beat cancer… While I am parenting a cute little girl, I didn’t think I looked girly enough to make a girly poster, I contacted them and they were nice enough to take it down though originally they told me fuck you. There have been inaccurate details in most of the journalistic pieces and I’m not one to get stuck on details but while there’s a custody hearing pending though, I’m certainly not going to let the internet promote that I’m using illegal substances. And while I’ve gotten suggested 20 cures to cancer which if I did them all I’d be dead in a few days I imagine. While anyone is free to take whatever approach they want from all parts of the world and different substances, and I don’t judge them in any way for it, I trust my doctors. They are human enough to make mistakes but committed enough to focus; I’m not sure what else there is to ask. I don’t think they are slaves to pharmaceuticals or hospital administrators. I don’t know that I trust those guys that much but I think my doctors, like all of us, have to contain some of who we are but that the best of us shines through if we’re honest. I saw him on Monday and we had a great appointment. I got to see the neuro oncologist here in Austin. All the media guys want to talk to my doctors which I have no great problem with except that unlike me they have a job and it’s to save people’s lives so I’ve been limiting who has access to them. This is only the 4th time or so I’ve seen Valiant but we’re getting used to each other even though he wears bow ties but you know bowties are cool. He who has only been my doctor since last August, interviewed with Comcast this week and he sent me a study I’d never seen before that talked about 5 mitigating factors out of which I only have 1 which makes the median survival rate closer to 8 years rather than 4. That doesn’t sound like much but somehow I was pretty thrilled. I don’t know when that piece or the headlines news one comes out or if someone will cut them. There’s been some good jokes about this media thing but my favorite one from a media person was we were going to do a piece on you until the pope got elected. The other was a friend asking if all this media stuff is going to my head. It’s not and frankly I’m not someone who is a fan of things that go to my head.

But with all the doctors who have talked to the media, they check what I want them to say and I say tell them whatever you want because I know from day one and until my dying day they’ve understood me and have been watching out for me. E60 is talking about coming to Duke making a a small documentary so the slow news will continue for a while. People keep asking if I get paid for this and I don’t; one that’s against journalistic principle and two, I am doing it for the same reason that to this day, I attend other cancer things and read blogs; there’s something that catches the human spirit in a way that statistics and medical journals don’t. Some of those things help me keep going and I hope to be passing it forward. I am a lot more comfortable when we’re focusing on the parenting angle than the athlete or cancer angle because I feel like the first one is the one I’m getting right more than the other two. People ask if I’m training harder and I’m not… because I want my legacy to be someone who helped and someone who raised a kid and so in spare time I volunteer places. And I am not thrilled about not working by the way. I wanted to get back to work after getting fired, even started working with the Department of Associative and Rehabilitative Services until the ex filed this custody hearing stating I should only have supervised visits and then I let them know that until this is settled, I’m going to hang out with my kid and that’ll be that.

I met with my attorney Thursday where their latest petition suggests that I am ignoring what my doctors say by running marathons. Well… there is a piece where the Duke guys are being quoted in the Wall Street Journal saying they’re fine with it and there will be a piece on Comcast where the local guys are also fine with it. There may be doctors in the world that wouldn’t allow this or would discourage this but not in my case and not my doctors because they are fucking awesome.

So it’s been a cancer filled week… a medical appointment, a newspaper appearance, a legal preparation date, a tv interview… a race on Sunday where it’s been announced I’d be at... Many emails and 2 sit down times with local survivors that just needed an ear and a beer. Tomorrow I speak at a young adult cancers summit and I spoke to a bunch of UT students about not having any excuses for running. Mostly there I actually tried to focus on the fact that in college I put on 35 lbs, that my daughter did almost a 5k at a school function, on my friend Matt who had to relearn to walk and talk and did the marathon. The running and winning a marathon may make a good story but I do that because it’s where I feel normal, where cancer hasn’t taken a step from me. My memory functions get mentioned in most articles but I haven’t given up on those, maybe they won’t get back to where they were but I’m trying. I still do lumosity most days, still use coping mechanisms, still using a smart phone to make up for some of the wits I lost. And it may not get back to where it was but I am going to keep trying.

But I have had some meals with some people who were here long before this and will be here long after where it also felt normal. And I go see some brilliant Duke doctors in two weeks. And I am going running in the morning. Because trying to do it with guidance, with company, with exercise is how I’ve avoided being dead and wrong and I’m going to keep aiming for that. 

No comments:

Post a Comment