What Does It Mean To Be A "Cancer Survivor"?

Transcript

GUY RAZ, HOST:

So up to this point, we've been hearing about the innovations in science and medicine behind the treatment, even the prevention, of some cancers. But in some ways, the scientific and medical side is just a small part of it.

DEBRA JARVIS: Exactly. The cancer experience is - so little of it is about medicine.

RAZ: This is Debra Jarvis. She's a writer and an ordained minister.

JARVIS: It's about feelings and faith and coping and meaning and evolving because when you're in treatment, you come and then you go. And now you've got the rest of your week to deal with what's going on with you.

RAZ: Debra is speaking from experience here. A couple of years ago, she went in for her yearly mammogram.

JARVIS: And then they said, oh, don't go quite yet. Let's take another mammogram. And then they said, oh, don't go quite yet. Let's do an ultrasound (laughter). And so, then the very kind physician came in and said, well, you know, there is an area of concern.

RAZ: Debra was diagnosed with breast cancer. She had a mastectomy. She went through rounds of chemotherapy. And today, thankfully, she's cancer free. But what gave her a unique perspective was that, at that time, Debra was also the chaplain at a hospital in Seattle, where she worked with cancer patients.

JARVIS: What happened was that patients would know I was in treatment, and a wall would come down. I mean - boom, like that.

RAZ: Like, you were part of the circle of trust?

JARVIS: That's exactly right. And so, then we had the shorthand, you know, of vocabulary that we knew and understood. We could talk about symptoms. They would give me advice. And this was the most surprising gift of all.

RAZ: But there was one thing about having cancer that made it hard for her to relate to other survivors, and it was that word - survivor.

JARVIS: It was as if somebody just pasted that label on my chest. You're a survivor. I thought, oh, yeah, but I'm so many other things. I've survived measles, too, but I don't wear a spotted ribbon.

(LAUGHTER)

JARVIS: I mean, people die from measles. It was so interesting to me.

RAZ: Debra talked more about this on the TED stage.

(SOUNDBITE OF TED TALK)

JARVIS: Now, don't, please, misunderstand me. Cancer organizations and the drive for early screening and cancer awareness and cancer research have normalized cancer. But sometimes it feels like people go a little overboard, and they start telling us how we're going to feel. So about a week after my surgery, we had a houseguest. At dinner that night, our houseguest proceeds to stretch his arms up over his head and say, you know, Deb, now you're really going to learn what's important. Yes, you are going to make some big changes in your life. Yep, this cancer is your wake-up call. And then, after my treatment, it just felt like everyone was telling me what my experience was going to mean. Oh, this means you're going to be doing the walk. Oh, this means you're coming to the luncheon. This means you're going to be wearing the pink ribbon and pink T-shirt and the headband and the earrings and the bracelet and the panties - panties. No, seriously, Google it.

(LAUGHTER)

JARVIS: It was at that point where I felt like, oh, my God, this is just taking over my life. And that's when I told myself, claim your experience. Don't let it claim you.

RAZ: What that meant for Debra was figuring out how she could grow and learn from the experience. But the problem with that is that fighting cancer is often a single-minded pursuit. It doesn't give you a lot of time to process the meaning of it all.

JARVIS: It's like walking on a rope bridge. So you're so intent on getting to the other side that you just don't look down. Then you get to the other side, you look back, and you go, holy crap. You know, you look over what you've just crossed.

RAZ: And so, Debra says, it's only after you survive when you really start to begin to interpret the experience for yourself. But at that point, you've already been labeled by others.

JARVIS: As a survivor only. You know, that's just a small part. You know, like, I also own a Subaru, so I'm a Subaru owner (laughter). I want you to know that.

RAZ: Yeah, but, I mean, there's a difference, right? I mean, like, that's a huge - that's a huge crucible that you sort of walked through and walked out of.

JARVIS: So here's the other thing, Guy. You basically do what they tell you to do to stay alive. And when people say, oh, my gosh, you're survivor, you know, sort of, to me, embedded in that phrase is, you're a survivor. You're someone who had to think about your death - wow. And I guess if that's the only thing in your life that you can be proud of, then yeah, you know, you can claim that. But I've had patients say to me, I'm prouder that my kids got through college. I want people to know that I'm a mom of a college graduate (laughter). So, you know, I mean, I don't mean to sound harsh and uncompassionate about people choosing that label, but if that's all you are, then you'll never grow.

(SOUNDBITE OF TED TALK)

JARVIS: So I was thrilled one day to get a page down into the lobby of the clinic from a patient who I'd seen the year before. And she was there with her two adult daughters, who I also knew, for her one-year follow-up exam. So I got down to the lobby, and they were ecstatic because she'd just gotten all of her test results back, and she was an NED - no evidence of disease. We sat down to visit, and it was so weird because within two minutes she started retelling me the story of her diagnosis and her surgery and her chemo, even though, as her chaplain, I saw her every week. And so I knew the story. And she was using words like suffering, agony. And she ended her story with - I felt crucified. And at that point, her two daughters got up and said, we're going to go get coffee. So I handed her a tissue, and I gave her a hug and then, because I really cared for this woman, I said, get down off your cross. And she said, what? And to her credit, she could talk about her reasons for embracing and clinging to this identity. It got her a lot of attention, but now was having the opposite effect. It was pushing people away. People kept leaving to get coffee. We have to let that crucified self die so that a new self - a truer self - is born.

RAZ: There's a book about cancer that you probably read. It's called "The Emperor Of All Maladies."

JARVIS: Right.

RAZ: And title says it all, right? Like, this is the scariest possible thing out there. You know, what explains that?

JARVIS: OK, so there isn't often a correlation between the diagnosis and your behavior. So I had no history of breast cancer. I was training for a triathlon. I was in the best shape of my life. I ate broccoli. I read The New Yorker. I drank a lot of water. I mean, what? So I think because it feels like it can strike randomly, that's one of the things that is so frightening. You just never know, it could be you. It's just like a beast that appears.

RAZ: See, the thing is, like, when we were thinking about doing this episode, we all said - everyone on the staff was like, this is going to be an optimistic show. Like, we're not going to do a sad, depressing show about cancer.

JARVIS: (Laughter) yeah.

RAZ: Like, I don't know, like, is that sort of like burying your head in the sand?

JARVIS: Well, no, no, no, no. See, I think sticking your head in the sand is about pretending that death isn't the big thing that everyone's freaking out about. And that's where I see, you know, the battle with medicine. And I'd like to think it's getting better but, you know, doctors are trained to see death as a failure and the enemy. But there's a lot of people that would tell you that this was their opportunity to really examine their lives and also gave them permission to end bad relationships, throw out things they never wanted, quit jobs they never really liked. It gave them permission to do that. So I've had patients say to me, you know, here's the good thing about this - I can say goodbye to my family. I can tell them how much I love them. I can finish off unfinished emotional business. I mean, that may seem morbid, but that's only if you think that death isn't part of life or that death is the enemy.

RAZ: (Exhales).

JARVIS: Let's go have a drink, Guy (laughter).

RAZ: Yeah. But red wine because we need the flavonoids or the lycopene or whatever's in there.

JARVIS: The resveratrol, right? (Laughter).

RAZ: The resveratrol, yes. Debra Jarvis. She's a chaplain and a writer. You can see her full talk at ted.com.

Hey, thanks for listening to our show this week, Fighting Cancer. We mentioned a bunch of studies throughout the show. We've put up links to those articles at our website, ted.npr.org. This episode is dedicated to our friend Joyce Slocum from Texas Public Radio. Joyce, keep up the fight. Our production staff at NPR includes Jeff Rogers, Brent Baughman, Meghan Keane, Neva Grant and Sanaz Meshkinpour, with help from Danielle Shukhin. Our intern is Sharif Youssef. Our partners at TED are Chris Anderson, June Cohen, Deron Triff and Janet Lee. I'm Guy Raz, and you've been listening to Ideas Worth Spreading here on the TED Radio Hour from NPR. Transcript provided by NPR, Copyright NPR.