2014-08-21

Henry David Thoreau wrote about how we must "live in the present, launch yourself on ever wave, find eternity in each moment." How to do that quite that consistently may seem over ambitious but I imagine it's no different than good nutrition, good exercise or work habits, the pattern is predictable of impressive wave riding. But every once in a while there are those moment are where you see the seed that will launch tremendous waves. I had the opportunity, no the privilege of attending what I fully believe and hope will be that in the world of health care. A few months back, I had previously been invited to the ground breaking of the new UT Dell Medical School. There were many cool moments about that but one of the things I was most impressed by was that the dean of the medical school said there was not going to be some ceremonial breaking ground with guys wearing suits using shovels and hard hats as is often the ritual in this type of circumstances. To each his own but somehow I was impressed by that, that he acknowledged and was prepared to think differently than putting shovels and hard hats in the hands of people who most likely ever only used them for ceremonial things.

Here, not too far down the road, actually it was slightly northwest up the road at UT's famous Main building, on August 18th, 2014, I was also invited to the launching of the Livestrong Cancer Institutes (http://www.livestrong.org/cancerinstitutes). I love Livestrong for many many reasons... the knowledge they've provided, the people they've united me with, the attitude they've helped me embraced... they're all bridges you feel safe with. They frame things differently, and not just differently but better. I've gotten to be part of their events before with the most recent one before this being a symposium back on June 12th, certainly an unforgettable day in my notebook, where they gathered people from all over to throw out ideas both from the stage and in discussion groups on patient centered care. I saw so many ideas with so much potential being discussed but potential and ideas are useless unless they are used.

Here in my hometown of Austin, I saw two places I love joining forces and see some of those hope growing closer to reality. UT Austin is launching the first medical school that has been established in the US of A since before I was born. While the buildings and professors are set to start taking students in 2016, the concepts have been taking place for years. Within it, Livestrong is launching the cancer initiatives and pledged $50 million dollars to the Dell Medical School over 10 years taking them over the $3 billion dollar mark necessary for all this. The cancer tips that they gave me in regards to not just treatment but finances and just as importantly emotional and social things will now be part of that hospital experience with patients getting those options and advice as quickly as possible after they hear you have cancer. I know I was fortunate that a running friend connected me with them within a few days of my diagnosis... it's good to know that for future Austin patients it will be a normal part of the process not just luck that someone knows about it.



When Kiana and I arrived at the building someone was kind enough to invite us to the front and center section of the press conference launch... (I can't say I didn't both feel unworthy and nervous of how was a 7  year old going to handle a bunch of older guys talking about many things that was above my level of comprehension much less hers. People were impressed with how well she behaved but let me just acknowledge that we were holding hands most of the time and playing a game where she had to keep track of how many times I squeezed her hand and squeeze it back that many times. It was a random amount that we got as high as up to my age, 34. I question my parenting often but if squeezing my princess hand keeps her smiling... I hope that means I'm doing something right. It was also fairly encouraging to have her ask questions about some of the things they were saying which I would answer later when we got home). There we would hear Senator Kirk Watson share about his own cancer experience, acknowledging that when he received it he got above average care and in gratefulness try to make that experience available to more and more people. I'd hear Jeff Garvey Chairman from Livestrong talk about the numbers that are impacted, the President of UT talk about the moment's historic authenticity of two Austin arenas that are committed locally to the University's Motto that "What starts there changes the world." The dean of the medical school Dr. Clay Johnson would talk about how they are unbound by any current rules of medical bureaucracy. There was conviction about how they intend to rewrite the playbook where they will teach their doctors that results matter more than procedures and educate them that the medical response will be more than dealing with the tumor and treat and help patients as humans who happen to have a tumor. A hero of mine, Doug Ulman, three time cancer survivor talked about the things that Livestrong has done for so many outside of the hospital experience and how Livestrong intends to and will be a part of it. If, no when this succeeds, well it will be one more methods in which example leads the way.

Three of survivors were highlighted in a video shown at it all (or five if you include our kids, Kiana and I were among them). Ceremonies are important and the public statements gave me much faith that this school is going to be the greatest medical school the world has ever seen. And I know some of the track record of these guys professional  from Livestrong's top brass to the volunteers and interns all showing that they have amazing hearts and incredible capacity. There was plenty of press there and I was asked to share some of my story with them for local news. I've crashed into enough people today who saw it on the news and told me about it but this one was the one that made Kiana the most happy (http://www.kvue.com/videos/news/2014/08/20/14156236/). One of the questions I was asked was what I thought about the $50 million dollar donation... while fortunately it didn't make the editing, I answered I have no concept of what $50 million is (though I am fundraising for Livestrong currently, https://www.crowdrise.com/EpicStrongChoosesJoy). Yet it was clear that the heavy hitters who had a lot more to think about and share than just their personal story, those who had captured the dynamically large vision, knew what they were talking about.

Still with that said, after the launch, there was a lunch (maybe I thought that's what they said when they
inviting me to). Professional stories were also shared more informally there. The dean of the medical school I got to hear about his neurology focus and how his frustration with how little we knew about the brain. It had been slow enough to where he moved into research and then leading change in how that was done and now to the be the dean of a medical. That passion was evident as he talked about how they were going to do things a whole new way. But he also told me about his two young children and their reactions to some of his ideas and how they got wide eyes like he's seen on Kiana. Doug Ulman, the CEO of Livestrong, whose passion and impatience balance itself into his survival and his urgency wanted a story like his far more dramatically than mine about carrying his own medical records from doctor to doctors. He was kind enough to give me a ride from the event and as he mentioned his three year old, while my daughter Kiana was in the backseat of his car, he said a simple human thing don't worry about the ride, I'm not the talking and texting type. The president of UT Bill Powers talked to me about his wife having pushed strollers and because she was faster than him running the first mile of races with him and then turning it on and being so impressed by how she would pass so many people while she was pushing a stroller. He also said with a twinkle in his eye that his staff was going to hear about how did they miss the opportunity of getting a press picture of him and such a cute little girl.  And so between their public media speech and the one on one human moments, I had full assurance and hope that two world forces have taken a giant step forward in making cancer specifically less relevant and the overall medical world better.

Thinking through all this, I remembered some things about my own journey like I was amazed (in a bad way) that it wasn't until almost 3 years into this journey that the capital of Texas finally got a neurooncologist. While I could have driven to Houston or Dallas (I flew to Duke), I am glad that the best option will be here.   I've long joked that this is all worth the hassle if Kiana becomes a neurosurgeon and she'll have the option of studying right downtown (where she'll come home for her 9 o'clock till she's 30 curfew.)

Maybe my world won't keep being this stable or my health this solid. The dean of the medical school was kind enough to say maybe I'll have you talk to the medical students in a couple of years and I said, I hope I'm still standing then but that'd be great. I am appreciate of the front row at the launch and in no time at all when the medical school is standing, Kiana, Austin and the world will be better for it. 

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