I Have Been Provoked | St. Peregrine, Peculiarities, and Time Loops

I am stronger than lymphoma.” Those few simple words on a friend’s Facebook page over the holidays said it all. Just a few short weeks ago, that same friend and I were having lunch at Cured in San Antonio during the San Antonio Breast Cancer Symposium. I had driven down from Austin to visit with her to discuss work we were planning together in 2017 to #changethefight with cancer. I wrote about this journey to Cured and its connection to many other “thin places” in The Love of My Life | Can You Imagine?

As I sit here now, on New Year’s Day, I am awash with emotions. This “I Have Been Provoked” post has been brewing within me for a while, since my last post in this series back at the end of September, I Have Been Provoked | Putting the Gloves Back On. My friend’s Facebook post and my reading of Beyond the Pink Moon by Nicki Boscia Durlester over the past week between Christmas and New Year’s are the spark to the kindling that has been building up these past few months. As the fire began to burn and I prepared to start writing, the title for this post revealed itself this week as well. It was Wednesday night.

My two older children, Taylor and Kyla, were out with other friends. My youngest, Katelyn (12), and I were having our date night. We have a little tradition where we have dinner at Tony C’s at the Hill Country Galleria in Bee Cave, Texas. We have our three favorite appetizers: garlic knots, baked mozzarella and a big Caesar salad to share. We love it. I love it. It is “our thing.” We followed dinner with a stroll around the Galleria and then headed over to Michael’s for a little shopping. One of Katelyn’s gifts is her creativity. It is a joy to watch her dig into a new project, a new area of art. On this night, it was beads for bracelets, earrings and necklaces. Even before heading home to watch a movie, though, I knew the universe was busy. You see our old babysitter, Clayton Verdoorn, was working at Tony C’s that night. He used to babysit the kids before heading off to Savannah College of Art and Design in 2007 and his many international adventures that followed. It had been ten years since we had seen each other. He was back. At Katelyn and my restaurant.

When Katelyn and I returned home, we decided to watch Miss Peregrine’s Home for Peculiar Children. It is a Tim Burton film adapting the story by author, Ransom Riggs. For those that have followed my writing and my story for a while, you know that Tim Burton is a special man. His movies were favorites of my young hero, Kethan Kumar, who regretfully passed from the side effects of his treatments for leukemia in the summer of 2013. His mom and dad were invited by Tim to watch the screening of this film in Austin earlier this year. As she texted me after Katelyn and I finished watching it, “Kethan would have loved it.” I loved it. I love Tim. I love Kethan. Kethan met Tim in the spring of 2013. Tim is a truly special man.

It was a magical movie full of spectacular creatures, spectacular stories, and spectacular film-making, as only Tim can do, and it also revealed the power of “peculiar” gifts. From Jacob, who can see invisible monsters, “hollowgasts”, to an invisible boy, Millard, to Miss Peregrine herself, an Ymbryne, a bird, that not only transforms into human form but who can also create time loops, recreating the same day over and over again, the movie is full of peculiarities. Each of us, though, is peculiar, not just these children. That is the magic of life, and why I Have Been Provoked. I truly believe that if we each harness our peculiar gifts then we can solve great problems. As I said from the stage at TEDxTrastevere in Rome in October of 2013, traveling in honor of Kethan, “can 7B human beings working together carve a canyon through the heart of cancer?

However, the connections of this movie to my story don’t stop there. A few months ago, a dear family friend and godmother to my daughter, Kyla, was visiting us in Austin. When she headed home, she left behind gifts for each of us, which is her tradition, a tradition that means so much to each of us, Taylor, Kyla, Katelyn and me. I have carried in my pocket her gift to me since she left it. It is a token. A small coin. On this coin is an image of St. Peregrine. Peregrine is from the famous Laziosi family in Italy, passed in 1345, and was canonized by Pope Benedict XIII in 1726. He was sainted by Pope Benedict because in 1325, after a vision of Christ, Peregrine was cured of cancer. To this day, Peregrine is the patron saint of cancer patients.

So, here’s the deal. Here’s why I am feeling particularly provoked today at the start of 2017. I am sick and tired of this time loop. We need an Ymbryne, like Miss Peregrine. Not to stop time and keep us in our own respective safe places, before cancer. We need a time loop to jump forward. We need a time loop that carries us forward to a place to where each and every unique and peculiar cancer has its own unique and peculiar answer. We need to see the hollowgast. We need to see this invisible monster, cancer, with all its tentacles, just like Tim Burton and Ransom Riggs’ characters in Miss Peregrine’s Home for Peculiar Children.

For whatever reason, this peculiarity is my calling. I see you cancer, but more importantly, I see past your tentacles and see the humanity of each and every person you afflict. I fight for them. I have Put the Gloves Back On because it is time for a new time loop. And to my friend that is looking at this particular time loop known as 2017 with trepidation, I know that you are indeed “stronger than lymphoma.” I fight for you. I fight for the “lovelies” of Beyond the Pink Moon. I fight in memory of the love of my life, my Maureen. I fight for “peculiar children,” like Kethan. I Have Been Provoked.

I Have Been Provoked | Putting the Gloves Back On

Illinoise - Sufjan StevensIt is a cool and beautiful morning in Austin, Texas. I am sitting at my favorite coffee shop, Teo’s. As I drove into town with my youngest daughter, the light was crisp. It had the orange hues of the approaching fall. As the sun came up, you could see the hints of this orange light touching the highest parts of the trees, glinting off of the leaves. As I write, I am listening to an album by Sufjan Stevens. One of its songs, Chicago (track 9), was dancing through my ears as this light was dancing on my eyes. I’ve never heard this song before I heard it this morning on KUT, but it is perfect.

It is perfect because I met the love of my life, Maureen, in Chicago. As we approach the two year anniversary of her passing, Teo’s is important for another reason. It faces Seton Hospital. I look up, and I see the room in which Maureen and I spent her last day of life. I look up at 7 North and see where I held her hand and kissed her good night for the last time on the night of October 20, 2014. She has left earth, but I know she has not left me or the kids. Mornings like this morning, songs like Chicago from Sufjan, are her little ways of saying hello. While my eyes and my ears delight in this glorious Austin morning, my heart leaps just thinking about every day that Maureen and I had together on earth. Love remains our connection, just like it was what bound us together here on earth.

For those that follow my writing, you know I have several themes. From The Love of My Life to the Powdered Donut Manifestos to I Have Been Provoked, there are patterns to my words. These patterns extend beyond my personal writing to my professional blog, The End of Linearity. One of my themes there is the People Geography of Healthcare. This People Geography theme evolved out of Maureen and my journey through her fight with breast cancer. However, I don’t think “fight” is the right word. Cancer never had a chance. As I have written before, cancer attacks the body, not the soul. Cancer may have been lurking in her body for 11 years, after she was diagnosed in late 2003, but it never stood a chance. Maureen lived life each and every day. She inspires me to this day, and our journeys to MD Anderson Cancer Center inspired my work to “Reweave the Fabric of the Internet to Transform Humanity,” something I spoke about at TEDxAustin in 2011. Maureen was in the audience. I told her of my love for her from the stage.

TEDxAustin - MaureenAs I thought about the title to this post, I was torn between the People Geography series and I Have Been Provoked. I settled on I Have Been Provoked because why I do my work is as important as what I do. Watching the TEDxAustin talk will give you a glimpse into my vision, but why I do this work matters even more. You see I love people. I loved Maureen more than any other, but I care deeply for all people. I went into sales and marketing at Apple, where I met Maureen in Chicago, because it was the best way for me to meet lots of people. I also met lots of people as I sat in waiting rooms with Maureen, at oncologists, at hospitals, at infusion centers, at cancer centers, like MD Anderson Cancer Center, like Lurie Cancer Center at Northwestern Memorial Hospital. I have met lots of people through twitter communities, like #bcsm (breast cancer social media), like #gyncsm (gynecological social media), like Beyond the Pink Moon where I have met many “lovelies.”

What do the people in each of these places and in each of these communities have in common? Cancer? No. What they share is a common humanity in the midst of the toughest fight of their lives. In the midst of the darkness, they shine light. Just like Maureen, they are not defined by their disease. Do each of their cancers have some difficult to pronounce Latin name. You bet, but their God-given names are easy to pronounce: Alicia, Nicki, Christina and so many, many others. These wonderful people are why I Have Been Provoked. It would have been easy to write about the People Geography of Healthcare because this is National Health IT Week, and conferences like Health 2.0 in San Francisco are bringing together technology leaders to discuss the best ways to connect patients (people) with each other and with the best possible care.

However, as I watch and engage the tweet streams, something struck me. Everybody talks about being patient-centric, but everybody starts the conversation from their own silo. Whether it is communities like Smart Patients or PatientsLikeMe or companies like Flatiron Health with its oncology technology or standards fights around “interoperability” between electronic health records, they all start from where they sit, not where the patient sits. They each are doing good work, and I believe are doing good work motivated by a real passion to make a difference for patients, for people. However, what if instead of patient-centric, we had patient-built? Each of these silos and tools are incredibly useful. Crafted by caring and brilliant founders. Yet, they are still silos. What if they could be woven together, with the patient as the thread that creates the broader digital fabric of information they each need for their journey?

Any one who has been through the oncology ecosystem, fighting for their life, just like Maureen and I and so many others, knows how complex the journey is. There is no “one” silo or “one” tool that manages it all. From trying to get scans from one doctor to the next, from reentering your insurance information at each and every provider, from scanning the Internet to find people who are experiencing exactly what you are, it gets complex and complicated fast.

I have “put my gloves back on,” because the work of CLOUD – Consortium for Local Ownership and Use of Data – which I spoke about at TEDxAustin is designed to empower people, and by extension empower all the amazing tools and communities to do more, too. It is all in how we see the problem. It is all in how we think about the user experience. It is about where we start. I start with people. I start with love. I start with Maureen. I start with the orange hues in the trees. I start in Chicago. Where we end up is up to us. Each of us has today, and I Have Been Provoked.


If you have been provoked, too, join us on the journey. Put your gloves on. As I said at the end of my TEDx talk, we want to build this future with you. To be patient-built, we must be patient-supported. If you want to join us on the journey to this future, we are now making our GoFundMe public. You can learn more here.  We are raising funds to build out the CLOUD organization, file for non-profit 501(c)(6) status, and maintain our momentum, ahead of larger commitments from industry, foundations and other organizations. Together, we can advance this future for not only healthcare and the fight with cancer but transform privacy, security, identity and data across many industries.

 

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Love, Powdered Donuts, Dragons and Dragonflies | Changing How We See

Heather's Hentai Dragon“We each carry within us our own dragon.” As I sat with my dear friend, Martin Kohout, over a drink this summer, these words didn’t just resonate at that moment, but they have been tickling my soul for weeks. As fellow parishioners, Heather Kohout said so many things over the years that caused me to think about scripture and life differently. Her children did the same thing at their mom’s celebration of life, not days after Maureen’s passing last October. “We each carry within us our own dragon.”

The past month has been an intense one. When I wrote “The Love of My Life | Have We Left our Mark?” at the end of July, I noted that my precious daughters headed east after our beach vacation. They headed east with Maureen’s mom and dad for time with both their grandparents and cousins, first in South Carolina, and then to North Carolina for time with my mom and dad, sister, brother-in-law and their “Thompson” cousins. Taylor and I not only headed west, but I realize now that I also headed inward. By closing my eyes and opening my heart this past month, my vision has both exploded and expanded.

For those that follow me on Facebook, they know that the dragonfly was an incredibly important symbol during our time at the beach. I’ve been allowing this image of the dragonfly to “flutter” in my mind’s eye for the last several weeks, just like Heather’s dragon. Unlike the crystals of sand along the beach, Maureen’s ashes and the powdered donuts that led to Have We Left our Mark?, the imagery of the dragonfly and its symbolism was only just starting at the beach. Everything that has happened in the last month as I have looked inward is a part of the bigger picture and changing how I see.

DragonflyDragons and dragonflies. The dragonfly is an incredible work of art and truly an impressive creature. In addition to its horizontal and transparent wings that allow it to fly in six directions, the dragonfly can “see” in dimensions that we as humans can not. Dragonflies have what are known as compound eyes. In addition to the compound structure that allows the dragonfly to see up, down and behind them, their retinas can see more than just the red, blue, and green of a human eye. The dragonfly can not only see four or five different colors, many that are beyond human capability, but they have more “facets” by which to process these images. Equally interesting is the brain power of the dragonfly that is dedicated to its sight. Not only does the dragonfly eye allow it to see 360 degrees around it, but 80% of its brain power is dedicated to sight. The dragonfly, in almost every part of the world, symbolizes change and change in perspective. As noted by the Learn about Nature website, the word dragonfly has its source in the myth that dragonflies were once dragons.

I did not know any of this when a huge dragonfly flew into the beach house at Ft. Morgan, Alabama on the Sunday night we had arrived. For those that have read The Love of My Life | Have We Left Our Mark? you know that Maureen’s father acknowledged his wonderful daughter and my beautiful bride in a prayer over dinner on our first night. Rather than hide from the powerful emotions coursing through all of us, we honored the love we all felt for Maureen and from Maureen. Not long after dinner, a dragonfly flew in an open door. I didn’t think much more about this winged creature until the next morning when I awoke early to head out on one of my three 40 mile bike rides of the week. It was quiet in the house, so it was easy to hear things. As I put water in my bottles and pulled out some bananas and Cliff Bars for the ride, I was startled by a rustling sound. I could not figure out for the life of me what it was. Then, I saw it. It was the dragonfly. Its wings were fluttering at the edge of the windows, looking out at the water, wanting to fly free. Just like God had opened the door to heaven for Maureen when she flew home 9 months earlier at Seton Hospital in Austin, I opened a door to the house that allowed this dragonfly to be released and to fly free.

That wasn’t the last of dragonflies at the beach. As if to be sure we “got it,” a whole fleet of them flew by the tent on the beach later in the week going from east to west, so many of them that it was simply impossible for us not to notice. And that is the thing about sight and “seeing.” How much of life do we miss because we simply aren’t looking at things in enough dimensions? How much of our sight is limited to red, green and blue? How much more could we see if we also used 80% of our brain for sight? As my new yoga practice has been teaching me in just the last few weeks, to see sometimes we actually have to close our eyes. We have to look inward. Heather had the courage to look inward and to see her cancer as something that was as much a part of her as everything else that made her a special gift from God. She symbolized her cancer, her dragon, with the amazing henna at the top of this post that adorned her gorgeous bald scalp. I am so thankful to Martin for this image, for his Heather and for him sharing the story of the dragon.

alice_in_wonderland_jabberwockyI am thankful because the dragon also connects to another deeply powerful image from my journey in the fight with cancer. I am bald because I love Kethan Kumar. Kethan would be an 8th grader this year, along with my daughter, Kyla. This courageous “little man,” as his mom, Sumithra, calls him changed not just my head but my heart. As this story from the Leukemia and Lymphoma Society about Kethan makes clear, Kethan had a form of cancer known as Acute Lymphocytic Leukemia (ALL). Although 85 – 90% of kids that get ALL survive, Kethan’s kind kept relapsing. In the summer of 2013, just before his 11th birthday, Kethan passed from this world to the next, releasing a human rainbow of one in the sky above his home. His celebration of life occurred a few days later on July 14, which is also the anniversary of my marriage to Maureen. I am convinced that this “connection” is more than just 2 dates that coincide on a calendar. Just like Heather Kohout, Maureen and Kethan never let their “dragons” change their flight. Cancer never changed the luminescence of their wings. They simply saw things differently as they flew through life.

This is where it all comes together, from the posts I made in My Tribute to Kethan years ago to The Love of My Life to the Powdered Donut Manifesto to I Have Been Provoked. Kethan and I had a code word for cancer. We called it the jabberwocky. For those that know Kethan, they know he adored Tim Burton and that Tim’s movies carried him through some of the darkest moments of his treatments. One of Kethan’s favorite Tim films was Alice in Wonderland. It has become one of mine. On Frabjous Day, Alice slayed the Jabberwocky with the Vorpal Sword. As I paid my last respects to Kethan in his home on the day of his passing, I promised him that I would forever remain his Alice, his champion, and that I would I would do all in my power to slay the jabberwocky, the dragon of cancer.

However, as the last month has unfolded, and I have dwelled more on the meaning of the dragonfly, I am beginning to see the “slaying of the jabberwocky” in a new light, a new dimension. If Heather is right, that we each carry within us our own dragon, then do we slay it by killing it, like Alice, do we eradicate it, like we try to do when we “fight cancer”? Or, perhaps, instead do we go beyond our limited sight? Do we add “facets” to our seeing, like the dragonfly? Do we dedicate more of our “vision” to seeing by dedicating more of our brain to our sight? Do we see more by closing our eyes? When I close my eyes at the end of a yoga session, I begin to see. I see not just me, but I see Maureen, and I see love. And when I see love, I am suddenly able to see everything. I see both dragons and dragonflies.

The People Geography of Healthcare | Human-Centric Thinking (Part 3)

Her Smile197 days ago, I wrote and posted Part 2 of the People Geography of Healthcare. 26 days later, I said goodbye to the love of my life, Maureen, my beautiful bride of over 24 years. Early in the morning of October 21, 2014, at Seton Hospital in Austin, Texas, with me by her side, she passed from this world to the next. The genetics of love beat the genetics of cancer. In the Love of My Life section of my personal blog, The End Of Linearity, I have been writing since before Maureen’s passing and since about the personal side of our journey, my love for her, and our stories. Here in the CLOUD section, I write about the implications and observations I have gained into healthcare in general and technology more broadly as a result of this journey.

RipplesThe depth of my passion for my work can only be understood by understanding the depth of my love for Maureen.  This short video, The Love of My Life | From the Heart, on Vimeo, shares my love with both words and tears. These words and tears still don’t come close to explaining just how much Maureen energized me, transformed me… built me. I am who I am, because she is who she was. My every remaining breath is dedicated to telling her stories and our stories so as to drop my pebble in the pond of humanity, to make whatever difference I can to make even just one other person’s battle with cancer better.  I truly believe that if each one of us acts from a position of love, then the cumulative effect of that positive energy can change everything, not just the battle with cancer.

From TEDxAustin in early 2011 to TEDxWeldQuay in Penang, Malaysia to TEDxTrastevere in Rome to TEDxTallaght in Dublin (all in one week in October 2013), the fight with cancer has energized every action I have taken. Each of these TED talks was motivated by love, love for both Maureen and for young Kethan, an 11 year old boy who I met at our kids’ school in late 2008, right when Maureen’s breast cancer recurred. Kethan passed in the summer of 2013 due to the side effects of his treatments for leukemia.

Screen Shot 2015-04-10 at 4.03.10 PMAs I think about the 26 days between Part 2 of “The People Geography of Healthcare” and the passing of my beautiful bride, Maureen, I can’t help but think about the 26 days I wrote about in Part 2. As I said in that post, “How is it possible that a genetic test that takes 14-17 days can’t start because it took 26 days for someone to finally take action to find my wife’s sample in the archive at Clinical Pathology Labs in Austin, Texas? How is it possible that Foundation Medicine, after taking action on September 3 and 4 on an order executed by our oncologist on August 29, would not act again until September 19, when our oncologist checked in? Even more disturbing, how is it that I had absolutely no visibility in to any of this, so I could jump in to the ring to get things moving?” As I also said in that post, the goal of my observations were not to point blame because blaming is never useful. It is pointless because it does not seek to find answers. Blame can never find answers, because blame looks backwards. Change looks ahead.

Interestingly, it is Foundation Medicine that is again provoking me to write. I couldn’t quite figure out what would motivate Part 3 of this series. A recent update on the appeal from Foundation Medicine from our insurance provider, Blue Cross Blue Shield, for coverage of their genetic testing is one of two motivating factors that is at the heart of this, Part 3. Before I proceed, I want to point how just how vital the genetic testing that Foundation Medicine and others provide will be in the future of  personalized medicine and cancer treatments. Theirs is good and important work. The weekend before Maureen passed, we identified a specific mutation in Maureen’s cancer for which there was a clinical trial for a new therapy. Let me repeat that in a slightly different way. The fact that Maureen had breast cancer was irrelevant at this point. Where the cancer started was less important the genetic pathways inside of it, allowing it to metastasize. Genetic testing would let us figure out how to turn that off.

9d3006f79087b118b14a56be41d37ed0Blue Cross Blue Shield has once again, over 5 months since Maureen’s passing, told Foundation Medicine that genetic testing is “experimental.” This is beyond short-sighted. It is inhumane. The first treatments for leukemia talked about in the recent PBS documentary, “The Emperor of All Maladies,” were once experimental, too. Those treatments now ensure that over 85% of pediatric ALL (acute lymphocytic leukemia) cases are “cured.” I am not angry at BCBS. It is important to note that throughout Maureen’s on and off 11 year battle with breast cancer, BCBS said yes to everything. Everything. If our oncologists believed that a treatment was necessary and could help, then BCBS never stood in the way. I am very, very thankful for that. However, having to look at mail that relates to my deceased wife is beyond irritating. It is a sign of how our system is broken, as I discussed back in Part 2. I should not have to see these letters, especially when they are addressed to Maureen. I’m sorry BCBS, but there is no forwarding address for heaven.

The second motivation for this post on the “People Geography of Healthcare” comes from another piece of mail that I received just after Easter. This one was from Life Line Screening, sponsored by Seton. You may recall that at the beginning of this post I mentioned where my wife passed from this world to the next, Seton. Again, just to be absolutely certain that the following is not misunderstood. I love the folks at Seton. We were on floor 7 North, the oncology wing, when Maureen was welcomed home by her maker, her God. The nurses, the staff, the atmosphere were all incredible. The Daughters of Charity would be proud of the dignity and love with which we were graced, not just in their care for the one day that we were there alive but in the dignity in which Maureen’s body was presented for each of my three kids to come say good bye to their mom the afternoon of October 21. I consider that room to be sacred space. It was Maureen’s portal between heaven and earth.

mail_stackWith that said, there is no greater clue to just how broken our system of information and personal data is than to receive a marketing piece for screening to find “unrecognized health problems.” Dear friends at Life Line Screening, trust me. Maureen’s health problems were clearly recognized. She hasn’t needed screening for any of them for over 197 days, and quite frankly, the genetic screening from the good folks at Foundation Medicine would have gone a lot further to helping us and her than any other. 

Here’s the rub. Foundation Medicine, BCBS and Life Line Screening are not at “fault” for any of this. As I said in Part 2, “the system is broken.” The way in which we manage information is broken. On October 21, 2014, I not only said goodbye to the love of my life, but I was sent a piece of paper, a death certificate, that told the world what my family and I already knew. We will know that we have fixed this broken system the day that piece of paper can “talk,” communicating with every data and marketing system in the world what God already knows. Maureen isn’t here any more. She is part of the chorus of angels, and she doesn’t need any more mail.

I Have Been Provoked | Part Two

Screen Shot 2015-01-29 at 9.27.35 AMI ended Part One of “I Have Been Provoked” with these words, “we have to rethink the fight with cancer.” I never expected to be in the middle of this fight. Heck, I never expected to hear the words, “you have cancer.” Even worse, those words were not spoken to me. They were spoken to my wife just 11 years ago. 3 months ago, I woke up in a room at Seton Hospital in Austin, Texas, and my wife was no longer breathing. Cancer did this. Cancer. Cells that have lost their sense of direction, their sense of purpose, their ability to control themselves. I have been provoked.

Now, it is also important to point out what cancer didn’t do, can’t do, will never do. Maureen was Maureen each and every day of her fight. She was a beautiful mother of three, an architect, my wife, my BFF, my soulmate. Cancer only attacks the body. It does not attack the soul. God owns our soul, and He welcomed my sweetie home the morning of October 21, 2014. He breathed new life into her soul, as cancer lost its fight that day. Cancer only attacks the body, not the soul.

But, I have been provoked, and I am speaking in stark terms, as I said in Part One. We have to speak in stark terms. Over 7 million people will have their bodies stop working this year, like Maureen, because of cancer. Some of the people in this fight are my friends, people I love dearly. Cancer changes everything. Sure, we have some tools that let us wage the fight more fairly for some cancers than others. These targeted therapies are exciting. Some, like Gleevec, literally turn the tables on cancer. They go into those cells and basically say, “I am sorry you are confused. I am sorry you have lost your sense of direction. I can’t fix you, but I am going to stop you. The rest of this beautiful body doesn’t need you wreaking havoc on it. So, stop. Now.” We need more of these tools. These 7 million people are too precious, too beautiful, too special, just like Maureen. We can and must change the terms of battle.

I have been provoked. We all need to be provoked, because, quite frankly, not only has cancer lost its sense of direction, but we have lost our sense of direction in the fight itself. When I go into waiting rooms, I see cancer in the faces of the people sitting there. Close your eyes and see them for yourselves. They are old, and they are young. They are female, and they are male. They are white, black, hispanic, asian. They are us. And, they are scared.

Perhaps, they have just been diagnosed for the first time. Perhaps, they have finished their treatment, and they are hoping to still be in remission after a month, a year, five years. They are scared. What will I do? Will it work? Has it come back? Will I have nausea? Will I be able to give birth to my daughter was the question we asked 11 years ago. Will I get to watch our children graduate high school was the question we asked 6 years ago when Maureen’s cancer came back. Every question is a hard question. Every cancer is a hard cancer. Every time I look into the faces in a waiting room, I wonder about the questions each and every person is asking of themselves. We need to question ourselves and ask if we have been provoked enough to change everything. I have.

I have no special expectations of myself. I remember frequently these words, “from dust to dust you shall return.” This body is not mine. It is only mine for a day, this day. Because, right now, I am breathing, and I can do something. I can do something different. I also realize this is not about me. This is not about any of us. This is about being provoked. This is about hoping others are provoked. This is about hoping others are provoked enough to be willing to change everything. Provoked enough to rethink research; provoked enough to rethink clinical trials; provoked enough to rethink patents and regulation; provoked enough to realize that collaboration is as important as competition; provoked enough to rethink hospitals, cancer centers, healthcare; provoked enough to realize that onco-philanthropies were born not to compete with each other but to compete with cancer; provoked enough to realize that we don’t have to do everything in the fight; but provoked enough to realize that the one thing that we can do well is exactly what the fight needs. And, the fight needs each of our individual gifts, right now, right here, today.

As Peter Gabriel does so beautifully performing this orchestral version of the David Bowie/Brian Eno classic, “Heroes,” live in Verona in 2010, “we only need to be heroes, just for this one day.” We each have today. We must be provoked. We can be heroes.

I Have Been Provoked | Part One

IMG_2341I am frequently asked “what do you do?” That is always a hard question for me to answer, because what I do is a function of who I am. To understand what I do is to understand what makes me tick. What drives me. Who I love. What makes me put the gloves on. I put the gloves on because I have been provoked.

I have been provoked by the “Emperor of All Maladies,” cancer. I have not just been provoked by cancer. I have been provoked by its consequences. I have been provoked not just because it led to me losing the love of my life, Maureen, on Tuesday, October 21, 2014. I have been provoked because of what it did before that. What I do is a function of how I have been provoked.

I have written a lot about our story, about the love of my life, about Maureen choosing to be a survivor and not a patient, about the amazing courage of my wife to live life to the fullest in the midst of great fear. I have written these stories, because as I said in one of my early posts late last summer, this was to be our story, not cancer’s. However, to make clear what I do and why I do it, I am about to speak in very stark terms about cancer. I will admit that I have been afraid to do this for some time. I’m scared of the emotions I have suppressed so that my love for Maureen can shine clearly, however, I have been provoked. I must speak. And, I must speak clearly.

On Saturday, we lost another very public figure to cancer, Stuart Scott of ESPN. However, on Friday night, as the kids and I were cooking some Chicago-style pizzas, I received news from a dear friend that her husband, who had fussed with cancer a year ago, was dealing with a metastases to his lungs. They are making big decisions on treatment now. Later that same night, I received another Facebook message from another friend. She had just attended the funeral of a lifelong friend who had battled breast cancer for 9 years, similar to Maureen. This diagnosis and this passing remind us that cancer knows no boundaries. Public, or private, it is taking away real lives, as well as the stories never to be written because lives are interrupted by treatment or worse taken by the consequences of cancer.

I have been provoked. I have been provoked because at the same time we heard the heartbeat of our now 10 year old daughter in Maureen’s womb, we also got the biopsy results of her breast cancer. I have been provoked because to get rid of this cancer we had to carve into the beautiful body that God granted to Maureen. We give it the fancy name mastectomy, but let us make no mistake. A knife is still a knife. Stuart Scott didn’t just have his appendix removed. He had cancer carved out from inside of him. Steve Jobs had to have his liver replaced because of cancer. It is not just the treatments that provoke me but the emotions. Cancer is downright scary. It is always lurking, furtively, waiting to escape in some new way.

I have been provoked because I’ve watched cancer in the faces of too many people in too many waiting rooms at too many oncologists at too many cancer centers. I’ve watched cancer in the faces of all that attended Maureen’s services and the services of too many others in our small St. Andrew’s Episcopal School community. As our priest said at Maureen’s services, “cancer sucks.” It does, and I have been provoked. I have been provoked because I love Maureen, and I had to watch the slow march of the consequences of a tumor in her brachial plexus under her right arm pit. An arm that she could slowly not lift because the nerves stopped working. An arm that slowly “inflated” (lymphedema) because the fluids could not escape past the tumor. An arm that she could no longer use to drive. An arm that she could no longer use to sketch… to be an architect. To be Maureen.

I could be angry. I choose to be provoked. To be angry would mean that all of my actions would flow from hate, my hate for cancer. To be provoked means that all of my actions, “what I do,” can flow from love, my love for Maureen and quite frankly my love and empathy for all who are dealing with this disease. I have been provoked. We all must be provoked. We have to allow the hard emotions to flow, so that we realize that our “war on cancer” needs new terms of battle. Like MD Anderson Cancer Center, I worry that these battle-laden terms are distracting, but I use them consciously here, because I have been provoked. We have to rethink the fight with cancer, and in the process, we may just uncover new ways to do a whole lot of other things as well.

The People Geography of Healthcare | Human-Centric Thinking (Part 1)

PersonLately, we are hearing a lot of talk about patient-centric care, ePatients and a myriad of other approaches to putting the patient in the center of the healthcare system. Like Web 2.0 and the dot com era before it, and more recently, the terms cloud computing and big data, there are certain phrases that require deeper levels of thinking to truly understand what they mean. CLOUD’s vision was born from one patient’s journey through a fight with breast cancer; a journey that continued this past week; a journey that inspires this first post in a whole series on the “people geography of healthcare.”

Part 1 of this series frames this CLOUD vision, so that Part 2, which explains our journey, can be better understood in this new context. Patient portals are one easy example of how words can be co-opted and used beyond their actual meaning. Is a patient portal really patient-centric when the “portal” requires a patient to log-in to a website connected to a specific system at a specific hospital or provider? On a patient’s healthcare journey, there are likely dozens of touch-points with various healthcare providers, it is simply not patient-centric when to access needed information, the patient must log-in to all these different portals and then collate and aggregate the data. Although the interface is graphically oriented because of HTML and the Web, it really is nothing more than a 21st century terminal log-in to a centralized system. New tools at all levels but old information technology (IT) thinking, not human-centric.

Cloud & MounatinsAnother word that is starting to pop up more frequently is ecosystem. At my talk in Rome at TEDxTrastevere last fall, I reflected on this concept, going further than my original comment at TEDxAustin a few years earlier. In my talk at TEDxAustin on “Reweaving the Fabric of the Internet to Transform Humanity,” I said the following, “from the perspective of a raindrop, there is no such thing as a cloud.” At TEDxTrastevere, in my talk titled, “Can a New Internet Change the Human Ecosystem,” I went further in this line of thinking and put out this challenge. “Can we create a human ecosystem, capable of harnessing the same force of raindrops in the water ecosystem? Can 7B human beings acting together carve a canyon through the heart of cancer?

The key to an ecosystem is that it is dynamic. It has no center. It is fluid. One hospital or medical center simply can’t be an ecosystem. As I noted in my TEDx talk at Rome, the same raindrop that flows in a river at one moment could be evaporating in the next moment, rising back up into a new cloud, a cloud that might last only a few moments or might erupt into an anvil cloud, unleashing not just torrents of rain but lightning as well, as the raindrops collide with each other.

RiverIn the case of Maureen and my journey this past week, this evolved thinking on ecosystems is vital, because in order to be patient-centric, we need first to be human-centric. In order for our ecosystem of personal cancer care to have any meaning, we needed our “raindrops” to collide with other raindrops in our own unique cloud. Our oncologist at MD Anderson in Houston, our new friend at Texas Oncology in Dallas, as well as our primary oncologist at Texas Oncology here in Austin are all vital components of our cancer ecosystem. Success in our fight with cancer will not come from patient-centric thinking but instead from human-centric thinking, because we are only one player, one raindrop, in this larger ecosystem. Like clouds and rain, these interactions occur in the context of a larger ecosystem, a system that is constantly evolving. More on that in Part 2…

Penang Monthly | Gary Thompson on the Internet’s CLOUD-y Future

On October 12, 2013, CLOUD co-founder, Gary Thompson, had the privilege of starting his TEDx World Tour at TEDxWeldQuay in Penang, Malaysia in tribute to his honored hero and daughter’s classmate, Kethan. Following his talk at the Whiteaway Arcade, Ch’ng Chin Chin from Penang Monthly caught up with Gary for an interview on his talk, his connection to Kethan and the implications of CLOUD for the future of the Internet. Ch’ng Chin Chin beautifully captured the story in this article recently featured in Penang Monthly:

Gary Thompson on the Internet’s CLOUD-y Future

Trophic Cascades, A Human Ecosystem, TED, Love and Cancer

Before I talk about the trophic cascade, I need to provide a little locational context. I am sitting next to the woman I love. Let me repeat that, I’m sitting next to the woman I love.  Unfortunately, we are at Seton Central hospital after some outpatient day surgery. This great piece, “Marriage Is Not For You,” reminded me exactly what it means to say this word: LOVE. For 23 years, the best of times are the ones when I’m totally and completely focused on Maureen, the woman I love, or the kids we’ve had the privilege of bringing in to the world.

IMG_0003Ten years ago, we heard different words, words that started us on the journey that has me sitting next to her again… in a hospital room, waiting for her to recover from yet another procedure, this time, a biopsy. What were those words? They were “you have cancer.” My words right after she heard those were “I love you.” Take the time to read “marriage is not for you,” because it really captures the essence of what it means to be in love. I will admit to not always getting this right over the last 23 years, but boy, when I do, I am the absolute happiest man in the world. To know our story with cancer, I point you to this piece I wrote a few years back, “Survivorship is Not a Phase.” A couple of weeks ago, we learned that this stupid cancer had “snuck out” of the Herceptin box we’ve had it in for the past few years. It has found its way to a few new spots, and this biopsy will tell us what this round of cancer cells look like now, so we can beat cancer back again.

So, what in the world does any of this have to do with a trophic cascade? Continue Reading →

Dropping Our Pebble in the Pond of Humanity

After 60 hours in a plane over the last two weeks and the privilege of speaking at TEDxWeldQuay, TEDxTrastevere and TEDxTallaght, I just returned home to Austin, Texas and to a big hug from my beautiful wife, Maureen. On the way home from Dublin, I stopped in San Francisco for the Nike Women’s Marathon, where a good friend and key part of Kethan’s Story, was running 26.2 miles to raise funds for the Leukemia and Lymphoma Society.

1383761_10153349306390524_1027466525_nIt was a tough weekend, not just because of the jet lag from Dublin (8 hour time difference), but because it was quite clear who was missing at the event in San Francisco. Kethan. Although I felt Kethan’s presence throughout my TEDx World Tour and had him watching over me on every stage, the tears in his mom and dad’s eyes, as well as mine, were as warm and damp as the day this “human rainbow of one” left our world for the next. The harsh reality of cancer is quite simply, still too harsh. Continue Reading →