The Love of My Life | Port(side) Out, Starboard Home – Mother’s Day 2015

72483AC-01748-00For folks that have been following the love of my life and my writing, I do not write on a schedule. Certain days call for words, but if those words aren’t there naturally, then I won’t write simply to write. On Maureen’s birthday, that could not have been more true, as our son, Taylor, was the one inspired with the right words for that day. With Mother’s Day looming, I have been wondering for several days whether the right words would present themselves. As is typically the case, there is a lot bumping around in my head, so it is usually simply a question of whether that cacophony will find an appropriate form that coalesces it.

Talking to my father yesterday, it did. I was talking to him about my trip to southern California this week, with a visit to Movember in Los Angeles and the opportunity to speak to a group of healthcare leaders in San Diego. A friend had told me to take the Amtrak, the Pacific Surfliner, from LA to San Diego, and they were right. Not only was it more comfortable than being on the freeways, but it was beautiful. My friend also told me to be sure to sit on the right side of the train on the way down. The right side was important, because that is the side that the beach and the Pacific Ocean will be on. As I shared this story with my dad yesterday, he reflected on P.O.S.H. and said Port(side) Out, Starboard Home.

As I’ve done a little digging on this old British slang, urban myth indicates that on the old P&O (Peninsula & Orient) from England to India, the Portside was preferable for the passage to India since your cabin would be in the shade and out of the sun, and starboard, for the same reasons, would be preferable on the return to England. Apparently, this bit of slang was widespread enough that it even cropped up in the 1968 movie, Chitty Chitty Bang Bang:

O the posh posh traveling life, the traveling life for me
First cabin and captain’s table regal company
Pardon the dust of the upper crust – fetch us a cup of tea
Port out, starboard home, posh with a capital P-O-S-H, posh

Doing a little more digging, it appears that it is very unlikely this acronym was at work on the tickets of passengers of the P&O. Acronyms are a 20th century phenomenon, and the term acronym was not even coined until 1940, well after the 1920s’ passages and tickets claiming to be its source. However, the beauty of the term posh is that it is “an entirely plausible and attractive explanation,” as the Phrase Finder site noted. It is not just an attractive explanation for my wonderful ride from LA to San Diego on the Amtrak but a beautiful motif for my life’s journey. Being “posh” on Mother’s Day is an excellent way to coalesce my many thoughts as my journey without Maureen (physically) continues.

As my many writings on the love of my life have already made clear in the months before and after Maureen’s passing, I have had the best possible berth on my passage through life. My 24 years of marriage and my 26 years in the presence of great beauty and pure love were not just portside out but the most elegant of state rooms, the finest of berths to be granted to any person. No matter how long I write or how many words I put on a page, I will never be able to bring ample meaning to our love, a love that continues to magnify and grow as we approach our 25th wedding anniversary this coming July 14. As Peter Pan reflected in the musical at our childrens’ school last evening, “to die would be an awfully big adventure.” I know that my sweetie is on this adventure, because of the many ways in which she makes herself known to us each day. Like Peter, I believe in fairies, because I believe in angels.

In many ways, October 21, 2014, the day of Maureen’s passing and the start of her awfully big adventure, marked the day that my journey on the portside out ended and my journey on starboard home began. I do not know the day that my Lord will choose to bring my journey, my passage through life to an end. I do know this. I still have the best possible berth for my passage through life, for this part of the journey. Although I would cherish the opportunity to spend one more day in our state room with my beloved Maureen, my state room is now occupied by the results of our love, our children, Taylor, Kyla and Katelyn. As I continue starboard home to the love of my life, I now share the journey with them. We miss you sweetie, but we know you are with us on this Mother’s Day, because love is still the compass that guides our ship, both portside out and starboard home.

Amtrak Surfliner – LA to San Diego

The Love of My Life | To Catch a Falling Star

6 months ago today was the last day I would spend with the love of my life, Maureen, alive. I came to the only place that seemed appropriate to write, “To Catch a Falling Star.” I am sitting at Teo’s Gelato and Espresso across from Seton Hospital on 38th street. I am looking up at the room on 7 North, the room that 6 months ago tomorrow I was looking down from as the day dawned. I looked out over the Hill Country and saw stars twinkling as dawn was arriving and looked down and saw Teo’s. Teo’s, the place where Maureen and I brought our 3 kids for gelato frequently after school. It has always been a special place. Now, it is sacred space.

With the title, “To Catch a Falling Star,” you might not expect me to talk about clowns and the circus, however, that is exactly what is to follow. Its connection to catching falling stars will become apparent and explicit at the end. Like so much of what I write, this one has been bouncing around in my head and my heart for months. Today, though, is the one where it will flow out, though my fingers, and into this latest post in the Love Of My Life. As I said in a voicemail I recently left for my sweetie, my Maureen, my love has only deepened and strengthened since her passing. I miss her terribly, but every time I think about her, every time I write about our love, I realize how blessed I was and am to have spent more than half my life with this truly incredible woman. So, you might be thinking, how exactly does the circus fit into all of this.

3539228196_80a9a254f8_zWell, after Maureen and I were married on July 14, 1990, we were eagerly awaiting our honeymoon to Denmark and Norway (I will write more about that journey in the future.). Before we embarked for that epic trip to Scandinavia, we decided to have a few days to ourselves to relax from the joy of our wedding and the celebration with our family and friends. We decided on a lovely B&B in Delavan, Wisconsin. It was spectacular, and we learned from the innkeepers at the time that Delavan, not Baraboo, was the actual historical home of the circus in Wisconsin. 24 years before Ringling Brothers raised its tent in Baraboo, Wisconsin, the U.S. Olympic Circus was raising its tent in Delavan. Delavan is in the beautiful Lake Geneva area of Wisconsin, and it was the perfect spot to rest and enjoy our first days of marriage. I’ve frequently joked with Maureen that like the clowns in the circus, I’m simply here for comic relief. During the 11 years of her on and off battle with breast cancer, there were many moments where being a clown is all I knew how to do.

One of the things that is fascinating about the circus I learned many years into my career in sales and marketing (as you may recall, Maureen and I met at Apple, where I was in sales). In sales, you frequently hear the slang term, have you made your nut? This is slang for have you made quota? Years after our trip to Delavan, Wisconsin, I was listening to NPR and heard a story about the circus. It caught my attention, and as I listened, I learned about the nut. Apparently, in the old days when the circus rolled in to town on a train, the head of the circus would hand the mayor the “nut.” The nut was the item that linked the engine of the locomotive to all the other circus cars. The head of the circus would then make a promise to the mayor about revenues to be raised while the circus was in town. Only when that commitment was made could the circus leave town. In order to connect the circus cars back to the locomotive, they would have to “make their nut.” I love trivia like this, and I loved the fact that it connected back to the circus and to the town in Wisconsin where Maureen and I started our honeymoon.

4797775804_7e174cfc4d_oMaureen and I crossed paths with the circus again last September as we were driving a “triangle” from Austin to Houston to Dallas and back to Austin. We had headed over to MD Anderson Cancer Center in Houston to get some ideas on next steps in treatment and from there headed up to Dallas to Texas Oncology at the Sammons Cancer Center. On our way up 45 from Houston to Dallas, we stopped in Corsicana for a bite for lunch. We went to the Collin Street Bakery. I still remember sitting across from Maureen, both of us eating a chicken salad sandwich on their amazing pecan bread. Obviously, this was a heavy trip, knowing that the metastasizing breast cancer needed new answers and new treatments. However, as I said before, comic relief was my natural suit, and for those that know Maureen, watching her laugh was as joyous and beautiful as watching her smile. As we read about the history of the Collin Street Bakery, we reflected on the start of our honeymoon years earlier back in Wisconsin. Apparently, the Collin Street Bakery and its fruitcakes had achieved worldwide fame because John Ringling and his circus had stayed in the hotel where the bakery was once housed. They so loved the fruitcakes that they began sending them as gifts to friends around the world. We not only brought some pecan bread home to the kids but also shared the stories of Delavan, Wisconsin.

Clown-AlleySo, this explains the circus, but you might be wondering what all of this has to do with catching a falling star. Well, many, many years ago when I was in a youth group at St. Matthew’s Episcopal Church in Westerville, Ohio, long before meeting the love of my life, I had gone to an Episcopal retreat. At the retreat, one of the activities was to paint our faces in “clown face” like the circus. This was pretty entertaining and fun, but it was only once we were done with the activity that the power of the clown was fully understood. Apparently, when we are at the circus, laughing hysterically as all the clowns pile out of the Volkswagen, there is something much deeper and incredibly more meaningful unfolding. For, the clown has a very special role at the circus. You may have noticed that in the middle ring, during the flying trapeze, there is no net. Just like life itself, we fly high above the ground with nothing to catch us, nothing to catching our star. In the case of the circus, however, that is indeed the role of the clown. The role of the clown is to catch a falling star. The role of the clown is to dive under the trapeze if the star falls and to break their fall and as a result, to give their life for their star, to “catch a falling star.”

If there was any biological way to have taken Maureen’s cancer cells and to insert them into my body, I would have done it. She was my star; I wanted to be her clown. Instead, she was mine. And, there is no doubt in my mind that God had decided she had made her “nut,” and He was ready for her circus train to return to heaven 6 months ago. Sweetie, I miss you, but I will make sure that I make my “nut,” along with the kids. Save me a spot in your ring in heaven, so that I can be your clown once again.

The People Geography of Healthcare | Love vs. Cancer, People Not IT

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.

The Love of My Life | Heaven Was Pink for One Day

11040178_10152821878738660_6778072819390919576_nNight is falling on Easter Day 2015. It has been an emotionally powerful Holy Week, staring last Sunday as we committed Maureen’s ashes on Palm Sunday. Then, the following day I celebrated my 50th birthday. I spent the day reflecting at the Lake Austin Spa Resort. The last time I was at the Lake Austin Spa was with Maureen, so it was both a refreshing day and a thoughtful one. On Monday, as I enjoyed a facial, lunch, reading by the pool and a massage, I decided that I was no longer going to use the word, bittersweet. For more than half of my life, I was with the love of my life, Maureen. Every day was sweet, and although I would love to continue to enjoy every one of my days with my beautiful bride, there is nothing bitter about love. I am certainly sad that she is no longer with me physically, but I am not bitter. I’m still in love.

As we traversed Holy Week, love, obviously came up frequently, as our feet were washed on Maundy Thursday; as Christ celebrated the last supper with his disciples; love was even on display in His death on the cross; and then today, the power of love washed over all of us as we celebrated His resurrection. You can see the impact of love in all of the wonderful Facebook pictures of friends and family having fun together, loving one another. Whether celebrating Passover or Easter, every one of us is celebrating love, and it shows. It is beautiful, and it is powerful. Love is the ultimate act of religious freedom.

The gospel reading at our Maundy Thursday service was from the gospel of John, and it has really stuck with me. It is from chapter 13. It is verses 34 and 35: “A new command I give you: Love one another. As I have loved you, so you must love one another. By this everyone will know that you are my disciples, if you love one another.” At this point, you may be asking, what in the world does any of this have to do with heaven being pink? Well, for one day, heaven was pink. It was two days after Maureen had passed away last October.

IMG_2450Before continuing, full disclosure is important. Maureen really didn’t like pink. It was the color of breast cancer. For those that have been reading the love of my life for a while, they know Maureen never allowed cancer to define her life. Her dignity during the 11 years that this “Emperor of All Maladies” was present in her body and our lives inspires the kids and I to this day. She exemplified love no matter how hard it got, however, for this one day last fall, pink was the color of love, not of breast cancer. This beautifully epic day will forever be etched in my memory, Kyla’s memory, our family’s memory, and the memory of all who were present for the volleyball game between the girls 5A teams of St. Andrew’s Episcopal School and St. Gabriel’s Catholic School.

I have been waiting to tell this particular story for over 5 months, never knowing when the right day would come to tell it in its entirety. I knew Easter would be the right day, but it wasn’t until Fr. Mike Adams’ sermon this morning at our church at All Saint’s Episcopal Church that I knew exactly why. Fr. Mike started by talking about sacraments. Sacraments are an outward and visible sign of an inward feeling. The powdered donuts we all enjoy on the 21st of each month, the day of Maureen’s passing last October, are a sacrament. The tea I still make Maureen every morning and her lunches on weekdays are sacraments. They are an outward and visible sign of the love I and we all feel for this daughter of God, my beautiful bride of over 24 years.

However, Fr. Mike continued with this statement about sacraments. Sacraments “allow us to say more than we can with just words and by participating in it, we are empowered to bring about in our daily lives what we symbolized in the sacrament. We play the kingdom of God, which is to say we play life.” On Thursday, October 23, the girls 5A volleyball teams played more than a game. If you were in the gym at St. Gabriel’s, you quickly realized that what was evolving out on the court was a sacrament. It was an outward and visible sign of the immense power of love.

To set the scene, it is important to note that both St. Andrew’s and St. Gabriel’s were tied in the standings at this point in the season. It is also important to note that both teams were really good; there were some excellent young ladies on both sides of the net. Thursday night of the game was only 2 days after Maureen’s passing. We were in the midst of preparations for Maureen’s funeral on Saturday; family from around the world were arriving in Austin; friends were rallying to support us; and quite frankly, we were still in shock. Against this backdrop, we arrived for this away game at St. Gabriel’s, about to bear witness to more than just an amazing game. We were about to bear witness to heaven on earth. Everything changed that night. Emotions went from numbness to joy, but not the joy that comes from winning a game, but the joy that comes from the power of love.

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The gym was a sea of pink. Each of the girls on Kyla’s team were in pink volleyball shorts, and each had a pink practice shirt on over their game shirts. These girls and their amazing parents in less than a day had come together out of love for Maureen and our family to put these wheels in motion. It was a deeply emotional and moving sight. Like I said, for this night, pink was the color of love, not of breast cancer. As the next few minutes unfolded, it was clear that this was not going to be a home game for St. Gabriel’s. It was instead going to be a home game for love. The varsity girls volleyball team from St. Andrew’s Upper School took the night off from their practice to come and support the middle schoolers, and almost every one of Kyla’s fellow 7th graders and their families were there, too. My heart was full. I know Maureen’s mom and dad were deeply moved (as were her whole family), moved by the love for their little girl, Maureen, and their granddaughter, Kyla.

Even before the game started, this volleyball game, this sacrament “allowed us to say more than we can with just words.” The game itself was as amazing as the outpouring of support. As I said, there was incredible talent on both sides of the net. Each of these ladies is a terrific player. St. Gabe’s is a strong competitor, and they fought each and every point. However, there was something different in each and every get, set, spike and serve on the St. Andrew’s side of the net that night. That night, it was not about volleyball. It was about love. You could see the love as balls were chased one step further; you could see the love as these ladies in pink went up together for a block; you could see the love as the digs went deeper, the sets went higher, the spikes went faster.

Before the game started, I had told Kyla that she didn’t need to win this game to honor her mommy, our Maureen. I told her to tell her teammates not only thank you but to have fun. That said, you could tell something was different that night, for Kyla and for her teammates. The game was a see-saw affair. The first set went to St. Gabe’s 25-22, and the second set went to St. Andrew’s with the same score in reverse, 25-22. This brought the match down to the final game, game three. I could tell my Kyla was inspired, as she leaped higher to get shots, and as she served more forcefully, with the force of love in the beautiful swing of her right arm. However, in this game, as with life itself, it is what we do together that makes all the difference. Every successful point in volleyball usually takes all three hits you are allowed on each side of the net, and on that night, each of Kyla’s teammates made sure that all three hits meant something. And, they will forever mean something. Kyla will be able to tell this story to her children one day, the story of the night that heaven was pink for one day.

For, as game three unfolded, these special teammates on the 5A St. Andrew’s Episcopal School girls volleyball team never jumped higher than they did than when they won the game 15-10. The joy that erupted was amazing. The love that was on display was moving. I think St. Gabe’s realized that no one had lost that night. We had all won, because love had won. Love had won, just like love won today with the resurrection of Christ we celebrate on Easter Day. Everything shifted for our family that night because of the love of these girls. This game said more than we could in words. It was a sacrament. We went from planning a funeral to planning a celebration of life. And that quite frankly is the whole point of Easter. No one loses to death when we are held in the embrace of love and the embrace of Jesus’ resurrection. Heaven was pink for one day.

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The Love of My Life | Living Your Passion

IMG_3497-500x375It is powdered donut day. It is hard to believe it is the fifth powdered donut day. Powdered donut day is a ritual, just like the ritual of spring break that we are about to finish or the ritual of making Maureen’s tea and lunch each weekday morning or the Eagle Scout ritual that we just celebrated with my nephew, Joshua Gable. Rituals are incredibly important; they mark moments, just like we use time itself to mark moments. Outside of the rising and setting of the sun, time itself is a human construct. We use it to mark moments.

On Monday this past week, we marked a moment. Joshua, Taylor’s cousin, just a month younger, received this important award in the life of a young man. It is the highest award from the Boy Scouts of America. It marks a unique set of boys. Only 4 percent of boys that join the BSA reach this rank. I reached it as a young man. My son, Taylor, is on his own path to Eagle. When Joshua’s Eagle court of honor coincided with our spring break, there was no question. We would make the drive to the Gables in Chattanooga to celebrate this moment. As folks that follow our story know, we are road trip people. We had the privilege of celebrating Joshua’s Eagle, a well deserved recognition, and we got to drive!!

Just being with Maureen’s sister this week, as well as with her mom and dad, who also drove up from South Carolina, reminded me how privileged I am. I not only married an amazing woman. I married an amazing family. The Diercxsens (Maureen’s maiden name) are special people. They know passion. They know love. They know laughter. They know donuts. You simply can’t spend more than a day with this amazing clan without laughing, without being happy, without being passionate. For goodness sake, this is the sister-in-law and family that makes a Dolly Parton cookie at Christmas… and by the way, Dominique, after last year’s Dolly Parton cookie, it looks like she has had some work recently! Without Dominique being in Austin at Maureen’s passing, I would not have gotten through the week. Her talents go far beyond the Dolly Parton cookie… far, far beyond. She and her family came together last October to mark a moment, a moment filled with sadness, yet a moment filled with love, love for the beautiful Maureen with whom I had the joy and privilege of welcoming Taylor, Kyla and Katelyn into the world, three new sparks of passion.

This is the same family that includes Suzanne, my other sister-in-law, who lives in Seattle. This is the Suzanne who lived 365 days of “I Nevers.” This is the Suzanne who honors her “Backwards Family.” This is the Suzanne that lives life to the fullest each and every day and brings out the best in her children, Nadine and Miles, and her husband, Todd. Even if she is just “leaning on the balcony railing,” she is probably “holding the universe together,” as J.D. Salinger wrote in the Catcher in the Rye. She puts the Fa Shizzle, the passion, into life. If you enjoy the Love of My Life, you would enjoy Suzanne Jumps, her blog. I know I do. One of Suzanne’s passions is making pillows. She makes great ones. I think passion has a lot to do with following your heart, which is why I am using a photo of one of her pillows, from the Tin Man, as my image for this Love of My Life.

I could write a lot more about passion, but I will let my recorded voice finish the story on this, the fifth powdered donut day. This quote from Suzanne’s blog post, “Is That Fa Shizzle?” jumped out at me. You will understand why when you watch my short 3 minute interview on passion:

When was the last time your own possibilities gave you goosepimples?

As I say in my interview, “The Love of My Life | Following Your Passion,” I think passion is the goosepimples you feel on the inside. This interview on passion was recorded at Casis Elementary School in Austin, Texas, just before spring break. Jimmy Agnew and the UniSaders were in the gym next door teaching kids there at Casis how to ride unicycles. Jimmy was Katelyn’s 2nd grade teacher, and he is following his passion. As he notes in his vision on the new site, One Wheel Many Children, “We understand that it’s not about preparing the path for the child, but about preparing the child for the path. And we believe in enjoying life’s ride.”

The video of my interview at Vimeo is raw right now. It hasn’t been edited yet for any other use. It is my heart. It is my beliefs and stories on passion. Jimmy has brought out my daughter, Katelyn’s passion, just like Maureen’s mom and dad brought out the passion in each of their daughters, Maureen, Suzanne and Dominique. Maureen not only brought out my passion, but she brought out my essence. She brought out my bubbles and the powder of my love. I will keep sprinkling that love, each and every day, until I have the joy of rejoining her in heaven. Until then, I will keep pedaling on life’s ride. Find your passion and keep pedaling on your own. That is passion, and one by one, together, we can change the world.

The Love of My Life | Shall I Take the Drive?

IMG_3136Tuesday morning of this week I was on the Northwestern University shuttle between the Chicago campus and the Evanston campus. It was a pleasant morning by Chicago standards… a bit cloudy and misty, unlike the day before. When I arrived on Monday, it was sunny and pleasant, a welcome respite for Chicagoans who had been fussing with yet another cold and snowy winter. In order to understand the intense emotions I felt that morning on the shuttle, though, I need to digress and talk about my dinner the night before.

Out of respect for the family’s privacy, I will not reveal with whom I had dinner. For the purposes of this story, it is enough to know that Maureen and my path intersected with theirs in our early days at Apple in the late 1980s and early 1990s. We were more than colleagues but weren’t necessarily close friends outside of the office. However, Monday night at Gino’s East, as I reconnected with my Apple friend, our conversation started as if we were friends that had been talking every day these past 25 years. We didn’t skip a beat after we got past the reality of 25 years. My bald head, shaved in honor of Kethan, who exited this world too soon due to the side effects of leukemia, and her naturally black hair, rather than the blond I remembered, were temporary exterior hiccups that preceded the giant hug that followed.

We hugged because we share something far deeper than our connection at Apple. We have spouses that we love; spouses with whom we have created life (3 children in my case, 4 children in hers); and regretfully, spouses who have been faced with cancer. My Apple friend and I had reconnected last fall on Facebook, and she had also sent down to Austin some awesome Chicago-style pizza that the kids had first experienced when we traveled to Chicago as a family last September. Her love story with her husband has as many interesting twists and turns as Maureen and mine. They were destined to meet; they were destined to fall in love; and they create and share the essence of their love in beautiful ways every day.

The depth of our connection first made itself clear over the Christmas holidays. I was busy cooking two of the deep dish pizzas she had sent when I received a Facebook message from her. It cut to my heart the instant I read it. Her husband was dealing with a metastasis of a sarcoma from his leg that had reached both his lungs. As I have written separately, I have been provoked by cancer, because as a loving spouse and caregiver, I unfortunately knew every layer of emotion that was surging through her beautiful heart at that moment. As our priest said at Maureen’s celebration of life, “cancer sucks.” However, at Gino’s East on Monday night, the connection become even clearer and even more divine.

We had finally ordered after talking for about an hour (it had seemed like only minutes). As we were awaiting our salad and deep dish pizza, my friend gracefully and beautifully shared a story with me from the day that Maureen had passed on Tuesday, October 21, last fall. As she related to me, she sat bolt up in her bed that morning, after a stark and vivid dream. Maureen’s soul, as it was exiting this earthly dimension and entering its heavenly realm, had visited her in her dream. I will share the contents of the dream first, and then share why it is both amazing and divine. As my friend explained, in her dream, Maureen and I had walked out on to a deck (for clarity, my friend has never visited us or our home). I was drinking coffee; Maureen was drinking tea. As she continued, Maureen was dressed in a flowing white robe (more like a confirmation dress than a wedding one). We were talking, and then Maureen lowered her head and passed from this world to the next. As my friend described it, she was at peace. She was ready. Maureen knew it was time.

Obviously, a story like this one not only brought me comfort in hearing it but a few tears as well. The tears, though, were driven by this. I always drink coffee. Maureen always prefers tea. We do have a deck, and we would frequently enjoy these beverages together in the mornings on it. The visuals my friend was describing felt more like a typical morning than a dream. I suspect that happens when the earthly plane and the heavenly plane come close to each other, when the veil is pierced for a moment. It was clearly pierced on the morning of Maureen’s passing.

As I shared with my friend after hearing this powerful experience, the importance of tea didn’t stop upon Maureen’s death. Just like the powdered donut ritual we observe on the 21st of every month, I observe another ritual. Just like when Maureen was here and getting weaker, I would make her lunch to take to the office, along with her morning tea. I suspect my kids chuckle a bit as I do this now, but I kiss the box of Pacific soup, containing her favorite cashew carrot ginger, then I kiss the oatmeal packet she would eat upon getting to her office, then a final peck on her granola bar. Into her Vera Bradley lunch bag it all goes with a little hug of it to my face. Then I set it down in the same spot in the corner of the kitchen on the way to the garage, Maureen’s place. Once lunch is packaged up, I turn to take the tea bag out of her favorite traveling mug, add a little squirt of agave nectar and an ice cube to cool it. I screw on the cap of the tumbler and place it on the counter next to her lunch.

I do all of this not just for the sake of ritual, but because it is only when my heart is most completely open to the love I feel for Maureen that I can feel her presence. I believe love is the dimension upon which heaven is based, which brings me back to Lake Shore Drive, the Northwestern shuttle, and the intense emotions that surged through me, in me and around me on Tuesday morning. Maureen would frequently mix up words, a bit like her dad, and come up with funny sayings. For example, on our first trip outside of Chicago to New Orleans, she ordered a cream cheese… with a sesame bagel on the side. I would tease her endlessly about these tiny twists of words, because she was so cute, and we loved to laugh together. She had a great laugh, a really great laugh. When we were first dating, we both lived not far off of Lake Shore Drive in Lincoln Park. So, on the way home from one of our dates, our cab driver, sensing we were headed home from a dinner date asked what any Chicagoan would ask, “shall I take the Drive?” To which, my dear sweet Maureen answered, “no, it is OK, you can go straight there.” After it dawned on her what he meant, we laughed about it then and many more times over the last 24 years, including our trip to Chicago with our kids last fall.

All of that washed over me on Tuesday morning as the shuttle passed not only the spot where this infamous comment occurred but at many other spots of consequence from our early days in Chicago along the way to Evanston up Lake Shore Drive. I was deeply connected to the love dimension that morning, and I know Maureen was with me, just like she was with my friend in her dream the morning of her passing. And the more I’ve thought about it the last few days, I think this is the ultimate question we must ask, shall I take the drive or shall we go straight there? Maureen and I took the Drive not only on that date but every day of the 24 years we were married. That is the whole point of a full life, and I know my friend and her husband, who is undergoing treatment for his cancer, are taking the drive as well.

To bring this story full circle, though, I can’t stop there. I must share one last experience and one last image from my Tuesday morning. As a Northwestern University alumnus, I frequently go back to the Norris Student Union when I’m on campus. This time I went after my meetings to get some purple NU clothes for my kiddos. As I walked downstairs, this image on the glass greeted me. “Let’s Beat Cancer.” After my experience and emotions on the shuttle, I was not just speechless but breathless upon seeing this. I knew my Maureen was not just speaking to me but guiding me. And trust me, sweetie: I am still listening; I still love you; and I’m still on the drive with you.

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The Love of My Life | From the Heart

Love Story Never EndsIt was early in 1989; Maureen and I had been dating for a few weeks. In my post at the beginning of last October, I had written about my “triple-positive” in the midst of Maureen’s recent diagnosis of her breast cancer turning “triple-negative.” As I said in that CaringBridge post, “I’m now going to turn to what I call my triple-positive: meeting Maureen, proposing to Maureen and being married to Maureen, three of the best things in my life, up until the birth of our three kids.”

I had also written in that same post about how our love story began. “I figured that a dozen red roses arriving on Christmas Eve at her family’s home in Ridgewood might do the trick…” It did. And, 26 years ago on Groundhog Day, I had a crazy idea, an idea from the heart. Celebrating the twelve days of Christmas is a tradition known to many, as is the song born from it. Our daughter, Kyla, sang a version of this song with her middle school choir at a Holiday Concert at St. Andrew’s Episcopal School this past Christmas season. It was beautiful, even though I didn’t have my bride of 24 years by my side to listen with me. However, I am getting ahead of myself.

It is 12 days before Valentine’s Day in 1989, and I was courting the love of my life, Maureen. As I said in my post this past October, I knew I was going to marry Maureen, but I still had to convince her of the same idea! The dozen roses at Christmas started our journey, but it was time for another dozen. This time, however, the roses weren’t going to occur all at the same time. They were going to happen one at a time, for 12 days. I called it the Twelve Days of Valentines, and I had so much fun with it.

Rather than just bring a red rose to the office every day (we worked in the same Apple office), I decided to make it a treasure hunt, each day with a new clue. The first day was across the street from our office at a chocolate shop (my sweetie loved chocolate). I had stopped by the shop the day before to purchase a box of chocolates; told them that Maureen would likely stop by sometime during the day; and then had them put a note in the box with both a message of love, as well as the clue for the next day and the next rose and its special Valentine’s gift and message. This continued through February 13 with the final clue pointing Maureen to Chez Collette at the Hotel Sofitel near O’Hare in Chicago. I had made reservations there for our first Valentine’s together on February 14, and yes, I actually had a whole dozen roses waiting at the restaurant. The first of the 11 had gotten a little wilted over the 12 days, so a fresh dozen was in order.

I am crying as I write this because I won’t get to give my Maureen a Valentines this year. I miss her. I’ve missed her every day since she passed after her on and off 11 year battle with breast cancer. The tears flow as freshly down my face now as the morning I awoke by her side at Seton Hospital in Austin on the morning of October 21. She was no longer breathing, and it took my own breath away. Since the day I first saw her beautiful face at our Apple office, I have lived and breathed my love for Maureen. The day I first saw her took my breath away. I was stunned by her beauty. As I share in this special Valentine’s video, “she changed my life.” She continues to change my life. Our journey is not over. As the photo in this post, sent to me by a dear friend, makes clear, “a true love story never ends.” My love story with Maureen is not over. It continues. It continues not just because I see her in the faces and the hearts of each of our three children. It isn’t over because I still love her. Death can not take that away.

As I said at Maureen’s “celebration of life” on October 25, I have always believed in heaven, but I believe in it more deeply now than ever before. I have felt Maureen’s presence, her love. It was incredibly intense the morning after her passing. It is not as intense now, but it continues. She is my angel; she is the love of my life; I know I can’t “see” her anymore, but you know what. You can’t see love either. It is a connection between two people that is invisible. It is what we do that makes it visible. That is why I continue to write. As I said in my CaringBridge post on August 17, 2014, “Have you ever noticed that when faced by a tough disease, like cancer, suddenly all the stories become about the cancer? Not us?”

This remains our story, not cancer’s. This is a story of hope. This is a story of love. This is a story of the love of my life. “The genetics of love have beat the genetics of cancer.” As I say in my Valentine’s video for Maureen, “the most important connection between people is love.” Rather than make love visible on just this one day, I will continue to write to make visible my love for Maureen, my beautiful wife of 24 years, my best friend, the mother of our three children, my soulmate, my Valentine.

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.