A fortunate and unfortunate result of being involved in the cancer community of any sort, brain cancer or otherwise, is a far less than subtle reminder of the disease in your head and out of your hands. I think about it everyday on my own as it is. But these are external remidners. Even the song they caught me singing on you tube during the Gusher Marathons was echoing Bon Jovi, "My life is like an open highway, like Frankie said, I did it my way. I just want to live while I'm alive." And while I sing, run and march to the beat of my own drummer, if you stay in this community you are privileged and forced to see how other people handle it.So I reflect and think about the girl whose team came in second at the Spartan race (http://teamwinter.org/), she has become an advocate for prostate cancer because she says she will talk about it since apparently not enough men will. She doesn't attend regular school (attends some impressive online classes) and she is an incredible athlete and advocate. Her and her mother are clearly passionate, happy and healthy and good for this cause. I can't say what they do didn't mess with me some. I know my life is strange between the medical appointments, the athletic events and the media things but I've done, or tried to, keep my life as normal as I can for Kiana. I am trying to catch as much of her childhood as I can and hoping to let it be as normal as possible under these circumstances. I say this a couple of entries after I write that that the Spartan win got money donated for Wonders and Worries, a program that gave her counseling about it.
The day after the donation I went to the 4th birthday party of a little boy whose dad passed of brain cancer. They had formed a team for the brainpower 5k and the banner was still up at their house (not a huge deal since it's been less than a month) but his ashes were still there in the living room, a clear note as to acknowledge, remember, deal with his presence and passing. And for me I hadsympathy, empathy, fear in that presence. It was a party that me, the guy who doesn't know when to shut up... well I didn't say much during the entire party. I went to Hawktober again for the third time and got the Mohawk one more time... http://www.flickr.com/photos/native_austinite/sets/72157636120290085/ This haircut is still not my style but I'll always ready to be a good sport for the advocacy of it all. Someone who was there was present because of a close family relative passing away of brain cancer rather unexpectedly. And the next media piece that I'm coming out in we got to have a preview of last week. (It'll be out in a couple of weeks but if you're really brave email me and I'll give you a sneak peek). There are three of us young survivors in it and another one with a brain tumor also made a significant point about how art, her therapy, is what she wants to be remembered by. She makes some great art but that was the remark that struck me so poignantly... that that is how she'll live on.
When I won the Gusher marathon between the screaming and throwing up, I said to the reporter what I've said in this blog over and over. That I am just hoping that some of the things I do with Kiana, if this is what kills me and eats away at my memories, that these good things I'm doing are the last things I'll remember and ones that I hope Kiana never forgets (http://www.beaumontenterprise.com/sports/article/Brain-cancer-patient-wins-Gusher-Marathon-4342280.php). He ended the article with the song I finished quoting, Fun.'s Carry On, "My head is on fire but legs are fine." The director of the marathon got me tickets to Fun for the concert they had last night. I've focused on those lyrics and the others from that song that state "May the past be the sound of my feet upon the ground." One friend said I should just assume that I am going to cheat death and focus on the lyrics from that same song "I'd like to think I can cheat it all, to make up for the times I've been cheated on" Amie James from the marathon said maybe I should focus on other lyrics found immediately after that "And it's nice to know when I was left for dead I was found and now I don't roam these streets. I am not the ghost you want of me." Let's just say that's one hell of a good song and listening to Fun in concert... well they lived up to their name and I was grateful to take the girl with me who was kind enough to talk me into asking the Gusher marathon if they would let me in with a stroller.
The guy with memory problems is working hard at making some memories with his daughter but the simple truth is that when people ask how I want to be remembered... I don't know that I have a great answer. Kiana is as independent as six years olds come and I think we all know that under my circumstances her mother would never let her become much of an advocate for brain cancer if I pass anytime soon but I hope that her causes are her own. I've been out trying to perspire not inspire and accept the first far more than the second. When people ask if I want to remembered, I'm not sure I do. In fact there's been many times I've read Christian Rosetti's Remember. While I hope to be cremated and flushed down the toilet... if they do a service before flushing, this is the only thing I want read :).
Remember me when I am gone away,
Gone far away into the silent land;
When you can no more hold me by the hand,
Nor I half turn to go yet turning stay.
Remember me when no more day by day
You tell me of our future that you plann'd:
Only remember me; you understand
It will be late to counsel then or pray.
Yet if you should forget me for a while
And afterwards remember, do not grieve:
For if the darkness and corruption leave
A vestige of the thoughts that once I had,
Better by far you should forget and smile
Than that you should remember and be sad.
There isn't a day I've forgotten I have brain cancer. There are rare days that I don't smile. But in regards to others that poem really says it all. I'd much rather Kiana, my mother, anyone, everyone, forget and smile than remember and be sad. I said this to a friend who got a mohawk with me and as we sat and had some fries to carb up for a practice ride, he was kind enough to say that just keep being honest and do the right thing and I bet most people will do what you seem to be doing with your memories, remembering and smiling.
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