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Katie Couric Colon Cancer Advocate

by Diana Price

Women: You have previously hosted the Stand Up To Cancer [SU2C] event, which you also co-produced. Can you describe the personal motivation that inspired you to help establish this groundbreaking advocacy effort?

K.C.: My initial motivation for getting involved in cancer advocacy, as your readers may know, was losing my husband, Jay, to the disease when he was only 42. I co-founded the National Colorectal Cancer Research Alliance with the Entertainment Industry Foundation to support research and to increase awareness of screening’s potentially lifesaving role. We soon saw what a powerful force television could be in the fight against this disease; after the Today show broadcast my colonoscopy, the number of people having this test rose 20 percent.

Researchers work 24/7 trying to end cancer’s reign as one of this country’s leading killers; they are truly unsung heroes in my view. A few years ago, as we were brainstorming about how to raise money to support their work, I thought, Wouldn’t it be incredible if all three major networks aired a cancer fundraising special? We could get people all over the country involved in helping these scientists to whatever extent they are able to. As we started to explore the idea, it turned out that others in the entertainment industry were pursuing the same thing: we joined forces, the networks were enthusiastic, and planning began in earnest. A lot of people worked very hard to make this first-of-its-kind event a success.

Women: How is SU2C different—and how do you hope the outcome will be different—from other advocacy campaigns with which our readers may be familiar?

K.C.: I have enormous respect for the cancer advocacy community; ending cancer’s reign as a leading cause of death is a common goal that unites us all. With advances in technology and our basic understanding of the disease, scientists are on the cusp of major breakthroughs that will bring us closer to achieving that goal than ever before.

Once the networks committed, our partners at the American Association for Cancer Research (AACR) began to develop a framework for how the funds raised will be used. Targeting projects with the greatest promise of getting new treatments to patients as quickly as possible is our core objective. Just as CBS, ABC, and NBC were working together in an unusual way, we wanted to facilitate collaboration among scientists and institutions that all too often compete with each other. We asked AACR to come up with a system that would hit head-on potential stumbling blocks to research progress.

SU2C will bring together the top scientists from research institutions across the country in “dream teams” to translate scientific discoveries into real advances in cancer treatment. There will also be grants for some high-risk, potentially high-impact research proposals, which are often not supported by conventional funding sources. Literally, as I’m answering these questions, the SU2C Scientific Advisory Committee members are getting ready to convene on a critical next step. Chaired by Nobel Laureate Phillip Sharp of MIT [the Massachusetts Institute of Technology], this group of 20 experts will determine the most promising areas of research—and the Dream Team members who will collaborate on it—to be funded with the more than $100 million raised to date.

Women: When your husband, Jay, was diagnosed with colon cancer at 41, he was young and healthy and had no family history of the disease. What was your initial response when you discovered he had cancer?

K.C.: Disbelief and then terror. In a day’s time, I went from feeling I had a charmed life to facing the harsh realization that everything I’d imagined for my family—my husband, my two little girls, and I—had been reduced to a dewy-eyed and ultimately naive misconception that my life would unfold exactly as I had planned.

Athletic, handsome, and seemingly healthy, Jay had Stage IV cancer, and his prognosis was bleak. My reporter’s instinct kicked in pretty quickly; I wanted to leave no stone unturned in trying to find treatment answers that could save his life. I tried to learn everything I could about this disease and potential therapies. My regular reading suddenly included publications like Lancet and Oncology Today, and my friends and I called cancer centers, pharmaceutical companies, researchers, and clinicians in the United States and all over the world.

Women: You continued to work after your husband’s diagnosis and so went through your journey in such a public way. How was that aspect of your experience difficult, and how was it a positive thing—if it was?

K.C.: Jay continued to work a good deal up until a few months before his death; maintaining whatever sense of normalcy we could was incredibly important to both of us. Sometimes it felt like it would be impossible to be a cheery morning television co-anchor, and other days doing two hours of live TV was a welcome distraction from the constant fear and worry. The support we received from colleagues and viewers—I got thousands of letters from people I had never met—meant the world to me and to Jay.

Women: Your daughters, Carrie and Ellie, were one and five years old at the time of Jay’s diagnosis. A major concern must have been their response to the situation. What was your approach to including them in the journey and, after your husband’s death, in helping them manage their grief?

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K.C.: Telling my daughters that their dad was very sick was one of the hardest things I’ve ever had to do. I referred to a number of books and talked to psychologists about it. I never wanted to give up hope—for Jay or for my children. When Ellie would ask if her Dad was going to die, I would answer as honestly as I could by saying, “I really hope not, sweetie. His doctors are doing everything they possibly can to help him and make him better…but I really don’t know.”

I think it boils down to you have to be there for your kids and surround them with love.

When they lose a parent, you do everything you can to keep him or her present in their lives.

We talk about Jay all the time. One day recently, when we were on vacation, Ellie asked me about the day he died. She and Carrie and I were at dinner, and we were all crying, but it was very cathartic. I think you have to take cues from your children and always seek a professional to help guide you. Sometimes you have to be more proactive than you would like in this situation, but it’s something you won’t regret. Healing is an ongoing process.

At Jay’s funeral I asked everyone to write letters to the girls that would help them get to know their dad better. This year, on the tenth anniversary of Jay’s death, we looked at some of them together. Reading about those moments from his childhood, college years, and career, recounted through so many different prisms, gives the girls wonderful insight into Jay’s life. One letter, from a college football teammate of Jay’s, described a game and the hilarious role Jay’s 1970s hairstyle played in it. After Jay caught a pass and was running to the goal line, “Out of nowhere, a defender caught hold of that damn ponytail and pulled Jay down, denying him a touchdown. All of us laughed so hard, we had to call a time out.” Ellie, Carrie, and I laughed, imagining the scene!

The other thing that was an incredible gift is that my brother-in-law, Chris, recently put together a film about Jay. He interviewed family, friends, and colleagues and painstakingly went through photos, yearbooks, home movies, and tapes from Jay’s work as an on-air legal commentator. It’s a remarkable snapshot of Jay and the things and the people who were important to him: Jay the ringleader among his six siblings; the gifted athlete, dancer, pianist, and lawyer; the Civil War history buff who played a bugle while riding a horse during battle reenactments; the wonderful son and husband; and the dad who loved his daughters more than life itself.

Women: You have said in other interviews that it’s hard to give advice to other families who are managing a cancer diagnosis or caring for a loved one with a terminal diagnosis because the experience is so personal. But are there coping strategies that helped you along the way or support networks that you turned to that you think would be helpful for our readers to know about?

K.C.: Having a sick parent can be very isolating for a child. During Jay’s illness, I asked a representative from CancerCare, a wonderful nonprofit organization, how I could help Ellie at school, and they suggested an exercise for her class called the worry cup. Each child puts a penny in a cup and talks about what they’re worried about. It seems a lot of the girls in first grade were worried about something. As a result, I think Ellie felt less alone. Her teacher told me afterward that it was one of the most profoundly moving experiences of her teaching career.

I would suggest that patients and caregivers utilize the skills and the resources of their whole healthcare team, including their nurses and social workers, who can help provide and identify sources of support. I also believe it is important to involve your family and friends—ask them for help. Family and friends often want to help but don’t know how. Sometimes they think they should “respect your privacy” and stay away, and some people feel uncomfortable with the notion of illness; it makes them think too much of their own mortality. Reach out to them and tell them specifically how they can help. If you know someone going through this experience, remember that any gesture—calling or sending a card—is so appreciated, even if there is no response.

Women: Your work as a public advocate for cancer—and colon cancer specifically—has been inspirational for so many people who have cared for a loved one with cancer because of the way you have translated your personal experience with such passion. Was there a specific moment or experience after which you knew that you were committed to a public role as an advocate for colon cancer prevention and research?

K.C.: I learned so much about colon cancer during Jay’s illness; I felt compelled to share that information with the public in the hope that I could spare other families the pain my own had endured. People didn’t talk very openly about colons or colonoscopies or any of that back then, and my job gave me a wonderful bully pulpit to bring the topic out of the closet and into breakfast table conversation. I needed to try to make something good come from this terrible loss.

There has been progress in the colon cancer arena in the past several years. With some scientific discoveries and everyone in the advocacy community keeping up a steady drumbeat of screening messages, the death rate has dropped almost 10 percent. Now we need to get the many millions of Americans who should be tested—and haven’t been—to get screened!

Jay and my sister, Emily, whom we lost to pancreatic cancer seven years ago, were young, vibrant people at the top of their games, with so much to give, whose lives were cut short. Doing whatever I can to “stand up to cancer” is a therapeutic way for me to honor their memories. I truly believe that in the not-too-distant future, if we all stand together, we can move cancer from a disease that takes far too many lives to one people survive.