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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.
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."