Tuesday, October 28, 2014

Broken Capeless Heroes

For a variety of reasons, this has been an emotionally wrought month... harder than most ever and
certainly the hardest month of 2014 for me. We all find somewhere to look when in that place and these days I turn to my heroes. One of them a Livestrong Leader, Scott, is someone I've been keeping track of more and we had a conversation where I told him he was one of my heroes from the way he has dealt with his own cancer and his wife's much too quick passing from it. Humbly, sincerely, he responded with the fact that he didn't feel like a hero. I tried to remind him of the basic truth that heroes have never been about how they felt, it was what they did with their emotions and by my standards, he has gone well above par every time. He said we could be heroes together as long as we don't wear capes. Since I am never able to handle those kind of compliments, I responded, I'll wear a cape if I want to damn it!

But these are the heroes in my book, the ones who do something regardless of feeling negative or overwhelmed. I am not sure if it's because of how they feel and hoping to overcome it or trying to get less people to have to experience those setbacks. I appreciate the people who tell me to do things for myself but I put off brain surgery to run a marathon and a local news channel covered it. One second slower I did one with my daughter and it's turned into something I would have never imagined. Perhaps, there are good stories are where people do something and win on their own but in my book the best stories are those where it's a shared experience of people doing things for others or together. It's guys like Scott and the Fowkes who have been cancer advocates since long before I'd heard of any of the statistics much less knew much about cancer in general or specific. And despite plenty of financial resources and good connections, that's why cancer often leaves us broken because with all the resources and connections they had, people died much too quickly at much too young of an age. Part of the reason, PART of the reason they are my heroes is that they continue to fight against cancer in their own way with official anti cancer organisations. But the bigger part of the reason is that they keep living life, loving in a better way. Scott's wife was writing her second book about time travel adventures when she passed away from cancer; he and his daughter are sitting there making tweaks to it hoping to get the publisher to pick it up in due time. Jimmy's parents have worked on getting his sister into Stanford where she did as a softball player which they did successfully. I sat there and listened to her tell me things I never knew I never knew about the sport like which positions you could be left handed in like she is and why.

I keep sitting with cancer survivors who are far beyond that and are ultimately just human connections. The best hope I've been given about all this came from a damn good line to me which I still hope will somehow prove true over the long haul: "I dare to believe that our connection is bigger than any disease". 

We make the connection over cancer cause it's been a disrupting force and it helps us have conversations which everyone else doesn't quite understand. There are human moments where someone passed away too quickly and had a month or three's prescription left and wanted to give it to someone who couldn't afford it. The pharmacy could only take it back and destroy it; that was unacceptable to someone. They didn't know anyone who was taking the same pill so they joined a support group and saved someone literally tens of thousands of dollars. There was someone who refilled his prescription as soon as possible so he could have an extra pill of the oral chemo after 31 months in case it didn't quite work out with the insurance company. If either of those acts occur to you as entirely dishonest decisions... well, you have a different standard of ethics than I do and feel free to judge me. But out of the 50 states, only 19 so far treat prescription chemo as covered the same way as the one taken in the hospital so prescription coverage is covered different than in patient coverage. Some stories are incredibly sad like a friend whose been having problems with insurance approving a treatment where to get on it would be 11k a month. He is a father of young kids and while luckily it has not turned out to be that with the help of a good attorney, he said exactly what I would. If the cost of staying alive is $11 thousand a month for pills, then I'll just die and leave more for my kids. 


Some stories are just funny or at least turned that way. That's probably true in all worlds where you share things with people who have similar experiences just because even if they don't perfectly understand well at least they are trying to. That's what I've tried for the people I love most; I'm not sure I'll always understand them but I'll always be trying to. That of course has had some sadness but it's been the fun of my adventures, trying to take on new understanding about why cyclists shaved their legs or why long distance runners wear cream between their legs or on their nipples. In proper company we rarely bring these things up because even as I tell my 7 year old daughter about why these things are hidden and not discussed, there are times as you get older where there's no avoiding discussing if you want to do the right thing. I've had to (gotten to) hear breast cancer survivors talk about their one nipple, or how they upgraded their breasts (which by the way for some meant going down in size). I've heard stories of people getting addicted to pain medication take shots at Rush Limbaugh in incredibly creative ways. Carrying shit in bags literally because of certain organs removed makes for some good jokes. And of course the side effects of certain medications and how they got in the way of sex showed that some people's spouses/significant others definitely loved them for more than that. 

Some of the stories leave you feeling broken, heart broken, or perhaps just tired. Even me, the guy with a bad memory, wishes he could forget more of it somedays. I struggle with that, especially in light of the media stuff highlighting my cancer things about me being a runner. I honestly don't mind it in light of other new events but the running, the reason I put off brain surgery to run a marathon was because that was where I felt normal so there are times it feels my normality is even more invaded by my brain cancer when running gets connected to it. But as I head to New York for the Marathon with Voices Against Brain Cancer, I am reminded that to whine about that is immature at best. This year, coincidentally, I am the only one on the team who is running with brain cancer. Everyone else is running in honor of, or in memory of someone with brain cancer. So, I appreciate the company along the journeys in both big and small ways like yesterday as I did my last track workout, I remembered that and played Broken while doing 400's starting with Kiana (https://www.youtube.com/watch?v=LdhF8w6LCNo)

I didn't know what I was looking for
So I didn't know what I'd find
I didn't know what I was missing
I guess you've been just a little too kind
And if I find just what I need
I'll put a little peace in my mind
Maybe you've been looking too
Or maybe you don't even need to try
Without you I was broken
But I'd rather be broke down with you by my side


(Speaking of heroes, if you want to be mine, please donate here http://vabc.convio.net/site/TR/VoicesinMotionEvents/VoicesinMotionTeams?px=1118485&pg=personal&fr_id=1181). So I go out and no matter how broken I feel, I get the workout in. 

While there is sadness in the people who are gone much too soon. But I find hope... in the friends I made at Duke whose wife says that chemo brain is finally going away and that their life is starting to feel more normal, in my friend Sean whose becoming a force to be reckoned with even though cancer treatment is done and is putting together a powerhouse team for the Austin marathon, in the girl who even as she's wrapping up her treatment makes a sign to take on a walk to honor the people who have been fortunate enough to meet her on that walk (I imagine she would phrase that the opposite but hey it's my blog), in the friend who I met through a brain cancer death who is now a roommate, in the church that reached out to me who are now my soulmates in our own way.

But I also find it in my old capeless heroes... most people without aphasia would just use another word, friends. There are many people who I've connected with through this and I imagine that the best of them the connection will be bigger than the disease because they were there as old friends before. Two of the absolute best I had lunch with yesterday, Todd and Egon, and acknowledging them well there's no proper way to thank them, I tried my own way. They were among the guys who were there that first night at the hospital (and I am incredibly grateful that almost all of those people are still a regular and happy part of my life). They were the ones who took funny t-shirts accepting my humor coping mechanism "I gave him a piece of my mind" and "It's not rocket surgery." One would be the one who'd take me to get the staples removed in my head and showing his manliness passed out while it was being done. The other would be the first person I'd call the second time I woke up in an ambulance and after getting a few facts also made a joke. (He's the executor of my will and jokes that if I die before a certain age that we've got a bet on that he's taking the winnings out of Kiana's fund) I'd tell you some of the other jokes that were made in there but hey the beauty of meals with old friends is that you get to keep some stuff personal. I always say these  friends are like the opposite of Cheers, while they know your name and because we heckle rather than be kind cause that's "manlier" of course, we couldn't care less that the other came. Obviously that's why the jokes exchanged between us about this meal and other past things are ones I've kept to laugh again at a future date. And furthermore, that's why another meal of getting together was scheduled before that one was even over.

So even when wondering about the disappointments, I realize I've got incredible blessings. I've only once tried to keep a notebook to remember anything in the digital age still...For a guy who uses the phrase in my book a lot I was recently featured in a book called Supersurvivors and got to see it shared here at the Texas capitol. While they talk about lots of people who turn trauma into a chance to do new things. I loved that as they talked about this person that person pointed them to someone else who they admired. I've never and never will accept the term inspirational since I'm just perspiring but it was neat to see that the "heroes" of this book were just humans who looked to another human who looked to another human, each of us  trying to embrace the beauty of humanity. So, I keep enjoying being a human, a dad, a little over a week away from being 4 years into my cancer journey. I smile at Kiana enjoying the fall festival as a Ninja and try to teach her the lesson that Ninjas don't wish upon a star, they throw them. I watch her gun it at the kick off marathon kids wearing a mustache. I am there when she receives her perfect attendance and straight A's awards but doesn't get the "good citizenship" award and realize yeah probably needs to be a bit more of a rule follower but somewhere also smile and realize that well behaved people rarely make history. I adore the fact that in her 3rd annual pumpkin carving party she did the entirety of the pumpkin by herself. 

So wait did I start saying this month was hard after talking about all that stuff? Either way, it will be over soon ending where Halloween in NYC where I'll dress as someone whose classy enough to try to take in a musical before wearing too short of shorts for a marathon. The heroes of old or of comics and movies were heroes because they gave us a chance to enjoy the extraordinary by enjoying some extra time with what we often assume is too ordinary. So like most days, today, I try to remember I don't tell jokes, run marathons, dance, play softball, write books, wink, take cooking classes, sing broadway musicals, hold hands, kiss, I don't do any of those to fight cancer. I fight cancer to keep doing those things. And I'm certainly nowhere near completely broken and I'm certainly no hero but I'll wear a cape if I want to ;).





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