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For two days, there would be brilliant minds from doctors talking about new approaches in medicine to designers talking about the music centered teenage branch of hospitals about how to make the approach to cancer more "patient centered". The life stories of the speakers alone told you both about their personal history and the projects' potential. From the openers like Tom Kean who was retired and still dedicating himself at age 72 to help out with this cancer cause even after achieving some impressive awards to people like Randall Carter of Planetree and Ellen Beckford whose brains are much better me and whose selling point was somehow a great balance of both evidence and compassion, they shared bits of information of how the system could be much better.
But their characters were also revealed in that these guys here had turned down other "high power" positions to be the new dean of the UT medical school, to guys who had helped the YMCA become more family centered in tough communities in simple examples where people who had been randomly thrown together had suddenly joined to become a singular team the next season (though they would lose every single game definitely found one big definition of winning). The anecdotes would continue as they shared pictures big and large of how costs mattered at the macro scale (talking about projects that costs more money than I can imagine) to little things about why hospital gowns could change from design (there are medical procedures where your backside is irrelevant but for some reason the gowns are still one size fits all) to letting people pick out colors (raising a little girl, trust me this make a difference). The mission and respect they had with each other showed both in how they paid attention to each other when in agreement and how they learned in discussion and debate while in panel and table discussions.
From my perspective, there was an echo of a blog I wrote long ago (http://pickingupahitchhiker.blogspot.com/2011/01/split-check.html) about how a restaurant should be created where everyone got separate bills from the waiter, janitor, cook etc with undecipherable explanations. A speaker shared that it was amusing that this conversation was even being had since there was no restaurant where they would try to have a customer centered experience. What was the norm in most industries had a long way to go in health care. But even he conceded that he wished he had been invited to a hypertension patient centered care forum since cancer was much more complicated.
My invitation came to share because of some of the best and worst parts of the story were relevant. I've long said that the only thing I cared about when this all started was the medical stuff and the financial things. Luckily for me, Livestrong was there at the beginning and while the seeds they planted would not get appropriate nurture for me initially. While that would delay in coming to fruiting, some of the very things that do matter as a chronic patient matter would come to matte a lot more to me like how it affects family, emotions, caretakers.
I shared my story about how I "fired" my original set of doctors and picked new ones because those first set didn't seem to care that the first set of anti seizure medications made me feel so much less of my personality (what's the point of healing if you lose so much of who you are?). They were fired because they wanted me to stop running but it turned out it was maybe because they weren't athletes themselves (a mystery to me that there are doctors who don't work out). For me, this had started in the emergency room for me with a cancer that has no known dietary, genetic, lifestyle or environmental component but I am glad that I learned the lesson early on that despite my cancer being a random draw, my choice of doctors didn't have to be.

Jen Garza who chose to spend her birthday in this panel would talk about how she met the love of her life and married him late in the cancer process. She shared some of the most touching and ugliest moment (perhaps the ugliest moment I heard about was someone showing up with a bill in the middle of a rough treatment session). She talked with an affection that was soft and kind and showed love really does have a capacity to break down some serious walls and overcome some odds. She talked about how we cling to humanity like when Ruben would not take music during treatment since he didn't want music ruined. She walked around sharing how they would leave hospice care to be able to go to concerts and how she got a doctor who told them when they had 3 days at best (it would be only one) who was also at the symposium. It showed the doctor was ahead of his time then and now that the approach hadn't changed.
We had a question and an answer time where I shared a bit of my story about the running parts I got right and the relationships ones I got wrong and I answered an awkward question about marriage about how I got to change my approach to relationships after cancer with some guidance. It was a candid painful answer to give of how long it took to realize that cancer was affecting a lot more than my left temporal lobe.
Out of all the presentations, the three of us were the only ones that received a standing ovation. You could say it was our creativity, or our honesty, or the ladies' charming good looks. But I think it was because the attendees where there where focused on that the best part of present and future care is patient centered. So if you come in with the mentality that the patients are human and thus the center, how could they not stand up and applaud? I attend enough medical appointments to know that the model there is not quite normal enough but the people in that room gave me hope that the change will be something they bulldoze to get to the right center.
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