Breast Cancer Health Center

Elizabeth Edwards: Her Breast Cancer Experience

The Things No One Tells You continued...

And some of the details of the disease can get lost in the sea of tests and appointments. Edwards says she has blood tests all the time, but she isn't always told if that day's test is to check on a tumor marker or whether the results would be available while she gets her drug infusion.

"It would have been great if a nurse had sat down with me and opened up my medical records and said, 'Here's what this is; this is what we're finding.'" But Edwards says she tries not to ask "a thousand questions ... because you know they're not going to get recompensed" for extra time. "That doesn't happen that often, and it would be really helpful if it did."

Edwards also says being more active during her treatment might have helped her feel better.

"I was so achy that I wasn't active in any way, and I might have actually found that I would have given myself more good days ... had I been active as I should have been during the actual treatment. It's just too easy just to lay back down and say, 'I'm just too stiff; I don't want to do it.'"

Life Today

Edwards says the personal stresses in her life, including her husband's infidelity, didn't make it harder to deal with her breast cancer recurrence. That's partly because she'd already weathered a searing loss, the death of her son, Wade, in a car accident years earlier, when Wade was 16.

In the wake of Wade's death, Edwards says, "I'm not as afraid of death" for herself and that cancer is "not in the ballpark of the worst things that have happened to me. His death was so huge."

Edwards says her kids are "doing pretty well," and although they don't often bring up cancer directly, "it's clearly part of their consciousness."

For instance, Edwards says her younger daughter, Emma Claire, recently asked her if she likes romaine lettuce, having read about it being an example of a healthy food for people with cancer.

"Even though she's not talking to me about it all the time, it's obviously on her mind. And, that's good for me to know," Edwards says. "You have to listen to those cues because it's not going to be, 'Mom, I'm thinking about cancer all the time.' Something's going to come to you in some different form from that."

Beyond her own health and her family, Edwards is also passionate about health care reform and promoting breast cancer awareness. And she's willing to put herself out there, even if being a well-known breast cancer patient is a double-edged sword.

"I have competing responsibilities, I think, as someone in the public eye with breast cancer," Edwards says. "One of them is to say to people with breast cancer, 'This is really hard what you're going through. Believe me, it's hard for everybody. ... This is perfectly normal to feel exhausted or perfectly normal to feel irritated sometimes, and don't think less of yourself because those are your feelings.' On the other hand, we don't want to be treated as if we're invalids. So when I'm feeling lousy, I don't feel like I have the same permission to share that, but I do want people to take care of us -- to take care of my sisters, in a sense."

"So I try to be strong, but not too strong. ... You're walking a really difficult line, and I don't think I always do it right. But I'm trying to get it right over time."