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.

The Love of My Life | Laissez Les Bon Temps Roulez!

IMG_2991In less than 12 hours, our son, Taylor, and I, will start our first half-marathon together. We are here in New Orleans. It is a special time. It is a special place, and my latest reflections on the love of my life have been over 26 years in the making. 26 years ago, the love of my life, Maureen, and I came to New Orleans together from Chicago. We had been dating since New Year’s, and we were so excited to escape the cold of Chicago and head south. I remember the energy of that trip and the pulse of my heart, as if it were yesterday. When you are with the love of your life, every day is like that. Your heart feels like it is going to burst, because it is so happy.  As Taylor and I were walking back to our hotel, after picking up some breakfast items for the morning, I pointed out the Le Meridien where his mom and I had stayed in February of 1989.

IMG_2977The good times were definitely rolling. Back then, for Maureen and I, they rolled as the result of one too many hurricanes at Pat O’Brien’s! This time they are rolling for different reasons.  Only hours after our arrival last night, as the kids and I were seated at our table at Domenica’s, they suddenly realized Mark Wahlberg was standing right next to us. Their hearts were racing with excitement, just like my heart raced with excitement being with Maureen. When you’ve been in love, you remember that wonderful feeling, that burning desire to be with the person you love. Their mere presence causes you great joy. That was Maureen and not just when we were dating. It was every day. It was the day I proposed. It was the day we were married. It was the day each of our children were born. It was every day, even in the waiting rooms at oncologists and hospitals. I loved being with Maureen. The good times always rolled. Always. She always brought me joy, and I know she brought Marky Mark into Domenica’s because she wants her kids to have joy. She wants their good times to roll.

The kids and I reflect often on our good times. Not a day goes by that we don’t wish that Maureen was back with us. Of course, we would only want her back when her good times were rolling, not when she was feeling the increasing pain of her fight with cancer. However, even though she is not with us physically, she is clearly with us. Too many little “coincidences” have happened, not just on this trip but others that point to the incredible power of love and “bon temps.” Interestingly, these coincidences all revolve around both powdered donuts and “you are my sunshine.” For those that have been following, “The Love of My Life,” you already know these stories. If you haven’t, it may be worth taking a moment to read those posts for context.

You Are My SundshineInterestingly, each of the coincidences occurred not far from Jackson Square and Cafe Du Monde. On my wall, next to my bed, back at home, I have a picture I took of Maureen in front of the posts surrounding the square in New Orleans, near the sidewalks in front of the shops. Last year, when we were here as a family, we took a similar picture, at the same post, with just her, as well as with the kids. The kids had some really good times with their mom on the trip to NOLA last year, just like I enjoyed our “bon temps” 25 years earlier. Both experiences were infused with joy and love, and it is important to remember that love is really, really powerful. Love is so powerful that I was blown away to receive this picture from a dear friend through the Leukemia and Lymphoma Society a few days ago. She was in a shop just off of Jackson Square, My Cherie Amour, when she saw this adorable platter with the words to You Are My Sunshine. Maureen was already present in this place, waiting to welcome the kids and I to New Orleans.

The power of love continued to manifest itself at Jackson Square this weekend. The kids and I went to Cafe Du Monde, just like we had done with Maureen a year ago, to have the mother of all powdered donuts, beignets. They were delicious, as always, and as the powder blew everywhere, we knew that Maureen’s love was blowing over us, too. We carried that love with us to the banks of the Mississippi River, after we finished at the Cafe Du Monde. This is our first big trip as a family since Maureen’s passing. We knew this had to be the first trip, because we shared so much love together in this city. We not only brought the powder of love, but we brought some of Maureen’s ashes. Today we not only sprinkled and were sprinkled by her love, but we sprinkled some of her ashes into the Mississippi River, the great river. We said a few prayers from the Episcopal Book of Common Prayer, and then, Maureen spoke to us. On our way back to Jackson Square, after sprinkling her ashes, we overhead just a few words from another group having a conversation with each other… they were talking about “you are my sunshine.”

We are all part of a great mystery. In my case, I am still watching this mystery unfold and sharing it via the words here, at the love of my life. I truly believe that love is so powerful that it pierces our universe in ways that we don’t fully understand… it cuts across time, and it cuts across experiences. A lot of love was shared in Jackson Square over the years, and Maureen pierced the veil of time to tell us she loves us. The Choctaw Indians, who lived in the lower Mississippi country, named it misha for “beyond” and sipokni for “age”, something ancient. Therefore, substantively, the Choctaw said, “here is a river that is beyond all age.” I can’t think of a better place for the first of Maureen’s ashes, because her love and my love for her cross time and cross the boundaries of heaven and earth. Laissez Les Bon Temps Roulez.

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 Love of My Life | Shadows

IMG_0685For the past few months, I have written and blogged about the Love of My Life, Maureen. I’ve been rereading a few of those posts now, crying and laughing as I think about just how lucky I am to be the guy in these stories. I lived these moments with this amazing girl, from our first dates to the birth of our children to all of the crazy stuff in between.

On the way into school and work this morning, I commented to my daughter, Kyla, that I missed her mommy. As the tears started to flow down my cheeks, though, I started to laugh uncontrollably. My 13 year-old was a bit confused over this turn of events, but as I explained, laughter and tears came from the same heart. They are both connected to the same love, the same stories, the same craziness. I laughed because I simply adored every minute of every day of every year that I had with Maureen. Sure there were hard times. We’re human.

The question, though, isn’t whether there are hard times. The question is what we are going to do with them. Maureen had hard times over her on and off 11 year battle with breast cancer. She made a choice. That choice changed not only her life but our life as a family and the lives of all with whom she interacted. Over the past few months, I’ve had many conversations and feel so blessed that folks feel comfortable talking with the kids and I about Maureen, about her loss, about their grief but also about their stories. For as much time as Maureen and I spent with each other, we also spent many hours apart, pursuing our respective passions and daily interactions. Every story that is shared adds another reason to smile, to cry, and to laugh. I cherish them.

A friend I met through the Leukemia and Lymphoma Society posted on my Facebook a wonderful and compelling comment. She said that in her tradition a person is not dead until the last person on earth that has a memory of that person also dies. That is a pretty powerful thought. We have yet not ceased “being alive” for as long as we animate the memories of another human being.

As I think about this now, I can’t help but think back to my road trip this summer to Lake Tahoe for my annual 100 mile bike ride with Team in Training for Kethan… and now for Maureen. The kids and I came back through Utah and visited a lot of amazing scenery and a lot… I mean a lot… of red rocks. Like many families, we capture the obligatory photos as we enter a national park or a new state. As the kids and I crossed into Utah, I took the photo included with this post. What is powerful in this picture is that I am in it… I am the shadow reflected into the photo with my kids.

And that’s just it. We all reflect shadows into each other’s lives… each and every day. I laughed and cried this morning because of Maureen’s shadow in my life. And that shadow will never cease, as my friend said, until the last living person touched by that shadow no longer feels its caress. Which makes me think long and hard about my shadow and how it falls over most especially my children but also about all those with whom I am in contact. I am blessed to know that Maureen’s shadow will always fall over me.

The Love of My Life | Bubbles AND Powdered Donuts

As I sit to capture in words my musings over the holidays, I think it is important to note my setting. I am sitting in the lobby of a quaint San Antonio hotel, just along the Riverwalk. The kids (Taylor, Kyla and Katelyn) and I drove down here yesterday for the start of a quick little get-away weekend. My son, Taylor, put it best. “Dad, we need a road trip. We’re road trip people.” He is right. We don’t dread them. We cherish them. For whatever reason, for us, going on a road trip, going someplace new brings out out our essence, our effervescence, our bubbles.

I started to write a little about bubbles on New Year’s Eve, as the kids and I popped a bottle of champagne to acknowledge the close of 2014 and the start of 2015. I noted on Facebook that night the many, many bubbles that our dear, sweet, beautiful Maureen brought into our lives, and after a day of silliness with my kids on our way to and in San Antonio, this bubble thing has really captured my interest as a motif, just like powdered donuts. As I awoke this morning for another day of adventure on our little road trip, I am realizing that every day needs either bubbles or powdered donuts, hopefully both. I am realizing that was part of Maureen’s magic for me, for the kids, for everyone that knew and loved her… there was always a bubble. There was always a powdered donut. She knew how to do both, and most of the time, she could package them both up into the same moment.

IMG_2911Yesterday, the kids and I had a bunch of bubble moments. For those that follow me on Facebook, they’ll already know our trip to Krispy Kreme was one of those bubble moments. With all of the New Year’s resolutions about health, fitness and good eating, I also couldn’t help but poke a little fun, too. However, Krispy Kreme is a serious bubble moment for the Thompson family. Maureen and I had a tradition with the kids as they started to get old enough to think about how they celebrated their birthdays. On the Sunday after their birthday each year, we would go to Krispy Kreme on the way to church. On the one hand, it was a way to limit the amount of donut eating in a year. On the other, it created bubble moments, those light, little effervescent moments of fun. We hadn’t been in a while, so yesterday, on the way to San Antonio, we bubbled together. Of course, my kids, like most, lament the photo moments that dads like me “impose” on them. However, looking again at this photo, I, too, am lamenting this one. One of two things. I either have too large a head or Krispy Kreme needs another size of hat! Geez!!

IMG_2942The kids and I had a lot more bubble moments in San Antonio, from connecting with my dear friend, Mike Sharrow, who popped down from his home in San Antonio for a quick and joyous visit to the Alamo with us, to a wonderful dinner and trip along the Riverwalk. At Mike’s suggestion, the kids and I decided to explore the new section of the Riverwalk on a river taxi that took us up to an area around the old Pearl brewery, a revitalized area, with offices, condos and restaurants. The 2 mile or so trip itself was an adventure, full of bubbles, from the holiday lights that were dangling over the river to the simple magic of the locks that took us from one level of the river to another to finish the trip. The bubbles continued as we walked around the area, waiting for our table at La Gloria, discovering a really cool coffeehouse called Local, and then rushing back over to La Gloria as my phone beeped signaling our table was ready. The dinner itself was as effervescent as our entire day. This food was good. When you live in Texas, you have a lot of tortillas, a lot of tacos, a lot of chips. La Gloria made them bubbly. The food was delicious. The food was amazing.

Heart of the ChocolateToday we are not only looking ahead to more bubbles, but we are going to have some powdered donut moments, too. We will drive from San Antonio to Johnson City to visit old friends, friends from 2 decades ago, when Maureen and I first moved to Austin, friends that now have a wonderful ranch where they have retired just west of Johnson City, a ranch known as Dove Point. As I think about it, Dove Point is a rather fitting place for a powdered donut day. The dove, of course, is a symbol of love and peace, just like the powdered donut has become a symbol for us. On New Year’s Eve, on Facebook, I asked if the powdered donut and champagne go together. One of Maureen and my oldest friends together, from Apple, a Frenchman, pointed out the obvious answer to this question. He highlighted the obviousness of the answer by putting it in all caps, “ANYTHING GOES WITH CHAMPAGNE!!” And, you know, he is right. It is all about bubbles… AND powdered donuts. This is our New Year’s resolution and hopefully it will be yours, too: that each and every day is filled with both the bubbles of life AND the powder of love!!