Survivorship is Not a Phase | Part One

Last Saturday, I had the pleasure of being at the Leukemia and Lymphoma Society Light the Night Walk in Austin in my role as the chapter president of our local board of trustees.  It was a truly beautiful evening in Austin, Texas, and we had almost 5,000 people assembling to walk in honor of survivors, in memory of loved ones or simply, because like me, they hate cancer. This picture of a vase of flowers was taken during the remembrance ceremony we host in a quiet place before the walk.  Each of the white flowers is in memory of someone who lost their fight to cancer. I did not have to place a white flower in the vase, because my Maureen, is still a survivor, but the vase reminded me of the depth of emotions that cancer and survivorship have for me.

For those that have watched my talk at TEDxAustin on “Reweaving the Fabric of the Internet to Transform Humanity,” they know that the story of CLOUD started with my wife’s battle with a recurrence of breast cancer.  However, I’ve have never fully opened up about the details of Maureen’s first diagnosis, and this View from Gary is going to do just that, just like another breast cancer survivor, Terri Wingham, does here.  By the way, Terri is that other person I mentioned earlier, but you still need to wait for that part of the story…

The word cancer and Maureen were first used in the same sentence in October of 2003.  I just asked Maureen which day exactly, but neither one of us can remember, because like Terri, this date, like September 11, 2001 or November 22, 1963 or July 31, 1997, conjures up a very specific set of memories for us, very, very personal memories.  Maureen was pregnant with our now 7 year old daughter, Katelyn, in October 2003.  During a routine pregnancy checkup, our obstetrician noticed a lump in Maureen’s right breast, a little firmer lump than she thought appropriate.  She suggested we get a biopsy.  B for biopsy comes before C for cancer, and let me tell you it is a really scary word, especially when you’ve just heard your baby’s heartbeat for the first time.  You’re not thinking about biopsies, you’re thinking about ultrasounds.

Before telling you about the results of that biopsy, I need to tell you a bit more about the love of my life, Maureen.  Starting in Chicago in the early 1990s, Maureen decided to pursue a graduate degree in architecture.  This is hard work, and I remain impressed by her tenacity. Starting at the University of Illinois at Chicago, she transferred to the University of Texas at Austin, when we moved to Texas in 1994.  She finished in 1997, started work at a firm in Austin, and after the necessary numbers of years of internship, started taking the nine different tests required to receive her license from the Texas Board of Architectural Examiners (TBAE).  In the late summer/early fall of 2003, she took the last test, passed it, and finished the paperwork for the official TBAE license.

When we returned home one night in late October 2003 with our other two children, we grabbed the mail and found an envelope from TBAE.  It was Maureen’s license!  We were thrilled. As we were opening that envelope in our kitchen, however, Maureen’s phone rang.  It was the doctor’s office.  We were scared to answer, because we knew it was the biopsy results. As she answered, I can still see exactly where we were standing in our kitchen, by our toaster oven. I watched her face sink, her eyes grow wet, and I knew.  I haven’t thought about this moment for a while. It hurts too much, and the tears in my eyes are as wet now as they were that day, and the anger is just as strong.  On the same day that she received the license culminating almost a decade of effort, she looked at me in our kitchen and said to me, “Gary, I have cancer.”

I’m as pissed off now as I was then. We had no idea what was coming next, but it was going to happen fast. On that day, without knowing it, we both became survivors. There were surgeries, chemotherapy, radiation and the blessed birth of our little girl, Katelyn, in April 2004. Then, there was the recurrence in the fall of 2008.  As Maureen was going through all the final tests for the big ‘check-out’ from cancer after five years of remission, we thought we were in the clear. Everything from the blood tests to the scans was coming back clean. We thought this “phase of survivorship” was about to come to a close. But, there was one last visit; she was with the same surgeon that had called us 5 years earlier. He was doing a physical exam, and he felt a lump, just like our obstetrician in 2003. He wanted to do a biopsy. B is for Biopsy. It comes before C for cancer, and it sucks the second time, as much as it does the first.  We suddenly realized that survivorship is not a phase. Almost 3 years after the recurrence, Maureen is still doing fine… still taking medicine for the cancer but is in good health, a great architect, an amazing wife and a spectacular mom.

I could tell you her cancer’s name… you know like acute lymphocytic cancer or HER2 positive breast cancer, but the real name for cancer is Maureen, Kethan, Tori, Terri and too many other beautiful human beings in our world. Just like having a cold, cancer does not define the person. We define who we are, not cancer. We are either a patient or a survivor, and we make that choice, not the cancer, which brings me back to Terri and the rest of my week.

Because of cancer and because of a # Friday Follow, like Terri describes in her blog, Survivorship is Not a Phase, a gal from Vancouver with a big hairy audacious dream met the husband of a girl that was so pissed off about cancer the second time around that he changed his life, his goals and his hair (I’m bald now). Terri described our meeting earlier this week as Sweet Serendipity, and I couldn’t agree more.  When we skyped for the first time to get to know each other better than the 140 characters of Twitter would allow, we discovered something really powerful about the impact of cancer and survivorship.

Within minutes of talking on Skype, with full transparency and authenticity, we were talking about some of the deepest emotions a human being can feel: fear, anger, hope and so much more.  We also realized that this is a gift found by so many survivors, the gift of being fully engaged with another human being with our stories.  And, we realized that this is a gift that should not only be shared by the 28 million living with cancer in the world.  It is a gift that survivors can share with those that have not heard the word, biopsy, which by the way, comes before C for cancer.  It’s about the stories and the connections, and the story isn’t really a bunch of individual stories but a shared story with many participants, stories that all have @afreshchapter … Sitting at LIVESTRONG on Tuesday, we shared more stories and more fresh chapters with Brenda, Chris and Renee… It was a beautiful afternoon and one that strengthened for each of us the depths of the words of their manifesto, written on the wall, right outside of our room.

It is connections, like the one I’ve made with Terri, and like the ones made by many other cancer survivors around the world that really matter in life.  Just like Terri’s story is not breast cancer, Maureen’s story is not breast cancer. Maureen’s story is the one I captured in this poem I wrote for Katelyn on the day of her birth. This is my story now, too.

WE’VE BEEN WAITING FOR YOU

We’ve been waiting for you. God told us you were coming. He told us about you in our prayers. He told us about you in His presence. He told us about you in the silence of our love.

We’ve been waiting for you. Like a diamond, like a jewel. Your life, your love have been shining into our world already.

We’ve been waiting for you. Mommy’s been waiting for you. Daddy’s been waiting for you. Taylor’s been waiting for you. Kyla’s been waiting for you.

Mommy’s been waiting for you. She’s felt you kick.

She’s felt you turn. She’s felt your love. You’ve given her life.

Daddy’s been waiting for you. He’s heard your heartbeat. He’s seen your face. He’s felt your love. He knows your gift.

Taylor’s been waiting for you. He’s excited about being a

big brother again. He wants to share his toys, his soccer ball, his life and his love.

Kyla’s been waiting for you. She wants to be a little sister and a big sister. She wants to share her joy, her passion, her smile and her love.

We’ve all been waiting for you. God told us you were coming. Into this world today, two lives are one. One life is two. Our lives are yours, your life is ours.