NPR Story
4:39 am
Sun May 26, 2013

Day By Day: A Mother's Life With Cancer

Originally published on Thu May 30, 2013 5:46 pm

When Neeley Wells was diagnosed with stage four ovarian cancer, her daughter Dylan was only 10 months old. The doctor told Wells she had two weeks to live. That was 13 years ago.

"In some ways, for me, it's a little like Groundhogs Day. I'll think, maybe this is my last spring break. And then I'll think, yeah, but I've already thought that 13 times. For me, as a person, there's not a lot of value to trying to figure out what the endgame or the end-time is."

Wells talks with Weekend Edition Sunday host Rachel Martin about what it's like living with a cancer that refuses to go into remission.


Interview Highlights

On parenting with cancer

"It's been great and amazing and I truly think that in my battle, if there's one variable that's made a difference — it's my daughter. She's empathetic and helpful and loving, but she's also resentful of the cancer. And since I was sick on Mother's Day and spent the day in bed and two days later she said, 'I'm just feeling kind of bossed around — bossed around by the cancer. I wish on Mother's Day that we had gone for a bike ride like any other family.'

"It's funny because I thought to myself, the last thing I would want to do — in any health circumstances — is go on a bike ride. It's not me. But she has created what her world would look like, if only."

On public perceptions of cancer

"The most freeing thing has been that when my hair has fallen out, I've been bald. That has been really freeing — and sometimes really hard. There are people who I think feel ashamed on my behalf, which I don't. And it's also been really beautiful. People making eye contact. A waitress at a local Portland restaurant just said, 'I don't know exactly what you're going through, but I can tell you're going through something, and I'm going to buy your breakfast this morning.' Which is, of course, about tons more than paying for breakfast. The funny thing is that I have more hair then I've had for years, but I'm a little bit more sick than I've been. And so, as people say, 'I'm so glad you're better.' I usually just say, 'Thank you.'

"It was very scary for me when [Dylan] entered kindergarten, because I was no longer the primary source of language that she was going to hear about cancer. And I didn't want her to start being told that everybody died of cancer and that it was terrible ... Society does kick out really, really informally, all these like, 'Oh, it's like a cancer tearing through our world,' or 'Oh, you have cancer. I'm so, so sorry — how long do you have?' And people would say things like that in front of her. And also, it's probably damaging to me to be asked that question at the grocery store. When she was in, about kindergarten, and people would ask her questions. I told her that I didn't think that she was beholden to always tell people the truth. And that she could even come up with some great outrageous lies if she wanted to. Like, 'Why is your mom bald?' 'What's wrong with your mom?' Just because somebody asks a question or verbalizes something that they are supposing, I do not have to fill them in on the answer. And I think that's been helpful for me."

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Transcript

RACHEL MARTIN, HOST:

This is WEEKEND EDITION, from NPR News. I'm Rachel Martin.

NEELEY WELLS: Society does kick out - really, really informally - all these, you know, like oh, it's like a cancer tearing through our world; or oh, you have cancer, I'm - you know - I'm so, so sorry.

MARTIN: That's Neeley Wells. She's been fighting stage IV ovarian cancer for 13 years. Eventually, it spread to her trachea. She was given just two weeks to live when her daughter was only 10 months old. But Wells started treatment; and weeks turned into months, turned into years. She has seen her daughter go through kindergarten, elementary school. Now, she's a teenager. Neeley Wells is our Sunday Conversation this week, and we'll hear more from her in a moment.

But first, a symbolic milestone in the national fight against cancer. The American Cancer Society is marking its 100th anniversary. We spoke with the group's president, Dr. Tony DeVita Jr., and started by asking him if cancer is more prevalent now. [POST-BROADCAST CORRECTION: The name of the cancer society president was incorrectly given. He is Dr. Vincent DeVita Jr.]

DR. VINCENT DEVITA, JR.: No, not necessarily. No. I mean, there're some cancers where the incidence rate is going up, like cancer of the pancreas. But, you know, the reason that you hear more about cancer - remember, in 1913, you didn't talk about it. When I was growing up as a kid, I had an aunt that was put in the attic. It was something that you just didn't talk about. Now...

MARTIN: Because she - she was - she had cancer.

DEVITA: She had cancer, and she died of it. But people, you know, you didn't go out in public; certainly didn't talk about it. It's more visible than it was before.

MARTIN: If remission isn't possible, doctors talk about one possible outcome, which is living with cancer as a chronic condition, something...

DEVITA: Yes.

MARTIN: ...you could treat, like diabetes.

DEVITA: Yes.

MARTIN: Is this happening more often, now?

DEVITA: Yes. I mean, I think the chronic myelocytic leukemia is a good example, although, you know, the results - 1996, when they first reported you could control it with drugs - median survival was about three and a half years before we had this kind of therapy. Now, patients are living a long time on the drug. And so it's very akin to diabetes. And I think, you know, we're seeing more and more of that, where you can give drugs that can control the disease. And we know the disease is still present, but the patient is living a perfectly normal life.

MARTIN: Your organization is marking its centennial anniversary. I wonder what you can tell us about the next 10 to 20 years. Will cancer remain the epidemic that it is today?

DEVITA: No. For example, there is a cancer of the malignant moles - all the brown moles you have on your skin. When it's metastatic - has been almost universally fatal. In the last three or four years, this very, very difficult-to-treat disease is all of a sudden - is going into remission, and we have long survivors - you've never seen before. And this is because we have specific, targeted therapy that we've never had before. I think this tumor is going to fall, and I think we're going to see other tumors come right behind it.

MARTIN: Dr. Tony DeVita Jr. He is president of the American Cancer Society.

WELLS: In some ways, for me, it's a little bit like "Groundhogs Day." Like, I'll think, maybe this is my last spring break. And then I'll think yeah, but I've already thought that, 13 times.

(LAUGHTER)

WELLS: You know, like...

MARTIN: And now, our Sunday Conversation with Neeley Wells of Portland, Ore.

WELLS: For me, as a person, there's not a lot of value to trying to figure out what the endgame, or the end-time, is.

MARTIN: We should point out, you have not been in remission, correct? I mean, a lot of people who live with cancer for years and years go through chapters where they are healthy and cancer-free. That has not been the case for you.

WELLS: Correct, I've never been in - cancer-free or in remission.

MARTIN: What's it been like to parent through this?

(LAUGHTER)

WELLS: It's been great and amazing, and I truly think that in my battle, if there's one variable that's made a difference, it's my daughter. She's empathetic and helpful and loving, but she's also resentful of the cancer. And since I was sick on Mother's Day and spent the day in bed - and two days later she said, I'm just feeling kind of bossed around, kind of bossed around by the cancer. I wish on Mother's Day that we had gone for a bike ride with - like any other family. And it's funny 'cause I thought to myself, the last thing I would want to do, in any health circumstances, is go on a bike ride.

(LAUGHTER)

WELLS: It's not me. But she, you know, she has created what her world would look like, if only.

MARTIN: Does she ask a lot of questions of you?

WELLS: She asks a lot of questions about what I need, or what are the next steps, or how will this affect her. She has asked questions like, are you going to die, very few times, under specific circumstances.

MARTIN: Cancer is, obviously, a really hard thing to talk about - for a lot of people. I imagine you've now had years of being in different social situations. And I wonder if you have, over the years, developed any conversational tricks to defuse tension, or to deflect an inartful comment that may have been launched your way.

WELLS: Well, I think for me, the most freeing thing has been that when my hair has fallen out, I've been bald. That has been really freeing and sometimes, really hard. There are people who I think feel ashamed on my behalf - which I don't. And it's also been really beautiful, just people making eye contact.

A waitress at, you know, a local Portland restaurant just said, I don't know exactly what you're going through, but I can tell you're going through something, and I'm going to buy your breakfast this morning - which is, of course, about tons more than paying for breakfast. And the funny thing is, I now have more hair then I have had for years, but I'm a little bit more sick than I've been. And so as people say, I'm so glad you're better, you know, I usually just say, thank you. I do think it's kind of hilarious that in ways I resent having hair, because now I have to pay for shampoo and haircuts...

(LAUGHTER)

WELLS: ...and product, which I think is sort of an odd reaction, but a true one.

Also, you know, really early on when Dylan was probably entering kindergarten, it was very scary for me when she entered kindergarten because I was no longer the primary source of language that she was going to hear about cancer. And I didn't want her to start being told that everybody died of cancer, and that it was terrible.

MARTIN: So you had to change your conversations - or take a more active role in talking about it, to make sure that she wasn't just getting one message.

WELLS: Right, because society does kick out - really, really informally - all these, you know, like oh, it's like a cancer tearing through our world; or oh, you have cancer, I'm - you know - I'm so, so sorry; how long do you have?

MARTIN: Oh.

WELLS: No, and people would say things like that in front of her. So it was - well, and also, it's probably damaging to me, to be asked that question, you know, at the grocery store.

When she was in - about kindergarten, and people would ask her questions, I told her that I didn't think that she was beholden to always tell people the truth, and that she could even come up with some great, outrageous lies if she wanted to. You know, like, why is your mom bald? What's wrong with your mom? Just because somebody asks a question, or verbalizes something that they are supposing, I do not have to fill them in on the answer. And I think that that has been helpful for me.

MARTIN: I imagine you have down days and up days.

WELLS: Yeah.

MARTIN: What does a really good day look like?

WELLS: A good day looks like time with family and friends. A good day, for me, always involves a social interaction. It involves - my best days would probably involve some time in the garden. I spend a lot of time volunteering at Dylan's school. I think a good day, for me, looks probably a lot like a good day for you, with just small variations.

MARTIN: Neeley Wells, talking to us from Portland, Ore.; mom of Dylan. Neeley, thank you so much.

WELLS: Thank you, yes. Transcript provided by NPR, Copyright NPR.

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