The Ultimate Survivor Looking Forward

In October, 2004, Elizabeth Edwards was traveling the United States supporting her husband, John Edwards, the former senator and Democratic vice presidential nominee. While on the campaign trail in Wisconsin, she detected a lump the size of a slice of plum on the side of her breast. Having a harmless breast cyst before, she thought the lump was just another cyst. Other than an aunt who had breast cancer, she had no family history of the disease. A week after making the discovery, Elizabeth had a mammogram and ultrasound back home in Raleigh, North Carolina. Back again on the road with the Campaign, she had a biopsy in Boston the day before the presidential election. The “plum” was cancer. Further tests showed the cancer had invaded her lymph nodes. Elizabeth was diagnosed with Stage II breast cancer.

In 2004 and 2005, Elizabeth was treated with chemotherapy to shrink the tumor. She then underwent a lumpectomy, followed by radiation therapy and triedaromatase inhibitors to block production of the hormone estrogen.

In 2007, nearly two years after Elizabeth completed treatment, the cancer re-appeared, having spread to her bones. Breast cancer that spreads to other organs of the body is stage IV breast cancer. In the fall of 2008, Elizabeth felt extraordinary pain which caused her to turn to the computer and on-line research.  She next called her doctor. An MRI, already scheduled, was fast-tracked. Its results revealed the cancer had gotten slightly worse. Since that time, tumors have spread to Elizabeth’s legs, spine and skull. She’s now on a new chemotherapy regime that she declines to publicly specify, in part, because she doesn’t want other breast cancer survivors to question their own therapy if it’s different from hers.

Elizabeth Edwards is an attorney and New York Times bestselling author of “Saving Graces” (2007), “ Resilience: Reflections on the Burdens and Gifts of Facing Life’s Adversities” (2009) and “Resilience: The New Afterward” (2010). She is a Senior Fellow at American Progress where she works on health care issues and writes occasionally for the Wonk Room, the Center for American Progress Action Fund’s policy blog. Elizabeth is the proud mother of four children: Catharine (“Cate”), Emma Claire, Jack, and Wade, her first child who was killed in a freak car accident in 1996 when he was sixteen years old. Many know of the strength Elizabeth showed after Wade died. She would exhibit this remarkable grace and courage again when the very private matter of her husband’s infidelity became public fodder.

This past summer, Elizabeth turned 61. Home is Chapel Hill, North Carolina, where she lives with Emma, 12 and Jack, 10. Cate, who is 28, lives and works in the Washington, D.C. area. Elizabeth is separated from her husband. In 2009, Elizabeth opened Red Window, her Chapel Hill-based home furnishings business. As her health allows, she continues to work on healthcare policy issues and speak as a breast health advocate. She recently walked the red carpet at Stand Up To Cancer, where she appeared for the second time in as many broadcast productions, as one of America’s most-admired women of our time.

BSM: Elizabeth, thank you for sharing some time with CancerForward’s community as we celebrate National Breast Cancer Awareness Month. Bring us up-to-speed. How is your health?

EAE: Beth, I am happy to be a part of CancerForward’s celebration of National Breast Cancer Awareness Month. It’s good to spend time with you again.

I expect to always be getting treatment for my breast cancer, which is Stage 4. My treatment changes periodically so that no particular protocol taxes my system unduly, and I am midway through a treatment I hope will be effective in retarding progression of the disease. My current treatment makes me tired, and I have lost my hair again but the side effects are small compared to the possible gain. My perspective is that my best chance for longer term survival is to take advantage of the medicines we do have and support research into new treatments.

BSM: What is the most difficult facet of living with your cancer? Is it the pain itself…the therapy…the unknown about your future?

EAE: The most difficult part of my cancer is that I have children — 28, 12, and 10 years old, and I would love to be able to give them a positive gift of certainty, but cancer does not allow that. I can live with the side effects of the treatments, which are sometimes difficult, but I cannot control the effect the disease has on my children. It can be heartbreaking, really, because my number one goal now is to be the mother each of my children needs.

BSM: Do you get depressed because of your cancer?

EAE: I do get depressed sometimes, Beth, but what I get depressed about is the life with my family that I might miss. And then I think: I have that time right this minute and if I sit around depressed then cancer has taken a moment I did not have to relinquish. There is nothing like watching your children play a sport or helping them with their homework to make you feel that the day is worth living fully.

BSM: This summer, the astounding results of a survey were released right in your own back yard. Winston-Salem’s Wake Forest University Baptist Medical Center revealed that 1.58 million adult cancer survivors live with minor children, highlighting a group of survivors with very special needs.  Do you see you or your children as survivors with special needs?

EAE: That is a difficult question, Beth, because I see them as my children — each with their own strengths and vulnerabilities. But I do try to plan ahead with their needs in mind, to make sure that when the next big transition in their lives happens that they have what they need to make as safe and secure a passage as possible.

BSM: What do Emma and Jack understand about your cancer?

EAE: Emma and Jack know that I have a cancer that will likely be my cause of death. But they also understand that death comes to all of us. Just as I do, they focus on the living that is happening now. It may be youthful naivete, it may be just plain optimism, but it works for us to concentrate on what we have and not what we will someday lose.

BSM: Your children have always been the top priority in your life and you have raised them beautifully…and we know…not alone. Were you not to have had children, how do you believe your cancer experience might have been different – or do you?

EAE: For me personally, it has been both easier and more difficult to have children and cancer. As I said, the most difficult part of my cancer is that I cannot protect my children from the pain and loss that cancer will inflict on my family. But at the same time they give me a reason to live each day as fully as possible despite this disease.

BSM: Elizabeth, what has enabled you to survive all that you have survived in the time since Wade’s death until now?

EAE: Wade’s death taught me that no matter how well we live, or try to live, there will always be things out of our control, even the things most precious to us. I read that cancer survivors often believe that something they did or failed to do caused them to get cancer. I have not thought that. I already knew that there is so much out of our control, and cancer is one of those things. The flip side of much being out of our control is that there are things within our control and we have a responsibility to do those things we can do as well as can. 

BSM: Let’s talk about things happy. You told me about Red Window just before opening it. I’d like others to know why in the middle of your cancer experience you chose to open it and what it means to you today.

EAE: I had always wanted to have a small store — maybe a children’s book store (one of my loves) or furniture store. Living in North Carolina, a furniture store made sense. And I decided not to put it off any longer. Whether it makes sense in the grand scheme of things, I don’t know. I do know that it made sense for me. I had spent a long time with a life that revolved around my husband, and I wanted a life that was mine. I knew I could not delay that dream forever, and I am so glad that I opened the store.

BSM: To cancer survivors, what do you hope you stand for today and what do you hope your legacy will be?

EAE: I think I am part of an army of survivors. I happened — because of circumstances completely outside my own making — to be in the spotlight, but I am just one of that army. Because of the spotlight, though, I have felt the need to show what we are each made of: we are fighters, we are dreamers, we are mothers and daughters and sisters (and the male counterparts) who care deeply about those in our lives, and we are optimists. My own legacy will be mostly personal: what I can leave to those whom I love. To them, and to anyone else, I hope to say that bad things — in many forms — happen to all of us and we may not be able to stop them from happening. What we can control is our response when they happen. We can stand tall instead of curling in a ball; we can grab each minute with as much joy as we can muster instead of hiding from the sunlight. We can choose to live.

Category: Survivors in the News

Tags: CancerForward Survivor in The News, Elizabeth Edwards, estrogen, healthcare policy, Lisa Niemi, Maria Shriver, MRI, New York Times, stage IV breast cancer, Stand Up To Cancer, triedaromatase inhibitors