RENEE MONTAGNE, host:
Jessica Queller was a young writer working at her dream job on a hit television show here in Los Angeles when her beautiful, vibrant mother died of ovarian cancer, and Jessica Queller took a genetic test. It turned out to be positive for a gene mutation known as the breast cancer gene, or BRACA. That meant that she had nearly a 90 percent chance of getting breast cancer, and a strong chance of getting ovarian cancer herself. Queller had a decision to make. She could be vigilant about testing and monitoring herself, hoping to catch any cancer early, or she could have her breasts and possibly her ovaries removed before she even developed the disease.
Jessica Queller has chronicled how she made that decision in a new book, "Pretty is What Changes." And she joined us here in our studios at NPR West. Thank you very much for joining us.
Ms. JESSICA QUELLER (Author, "Pretty is What Changes"): Thank you for having me.
MONTAGNE: Even hearing this conversation that we're about to have will be very uncomfortable for some of our listeners - maybe I should make this as a bit of a warning - because the choice you made was, in fact, to have a double mastectomy.
Ms. QUELLER: Yes.
MONTAGNE: And the thought of having a double mastectomy before you have any disease at all, prophylactic, it's a shock to most people.
Ms. QUELLER: Yes, I think it still is, very much so. When it was first suggested to me, I found it as shocking as anyone would, and I was 34 when I tested positive for the gene. And I was 35 when I first saw a genetic counselor and she first gave me the information that the gold standard for preventing cancer when you are BRACA positive was prophylactic surgery and removing your breasts and ovaries without any disease. And I said to myself, she's got to be insane.
I mean, how could she even say something like that to me? I'm single and dating and I want a family, and I would never consider - I mean, it was an outrageous proposition to me at the time. It took me a year of research and assimilating the information to come around to considering something like that.
MONTAGNE: You know, you begin your book with the difficult-to-read story of your mother's slow deterioration from ovarian cancer. Tell us some of the ways in which this sickness took over your mother.
Ms. QUELLER: Well, first of all, people ask me all of the time, was your life split in half when you tested positive for the gene? Is it a before and after, and before and after you had the mastectomy? And my answer is that my life was split in half already by my mother's illness and death. The most traumatic thing that I've experienced in my life is witnessing the tremendous suffering and horror that happened throughout the course of my mother's illness.
It was a very dramatic and horrific shutting down of the body, in a way. There was - she could no longer eat. Swallowing a sip of soup gave her intense, sharp pain. She could barely walk. She was vomiting…
MONTAGNE: Sores all over…
Ms. QUELLER: She had sores from the chemotherapy in her mouth and on her feet and her hands, and she was absolutely dead-set upon beating this disease until the last moment. She just couldn't accept the fact that she was dying.
MONTAGNE: Hard as that was for you to go through with your mother, it still could not have been an easy decision, ultimately, to settle on having a double mastectomy at a young age, in your 30s. What were your concerns about the physical effects of this surgery?
Ms. QUELLER: I had terrible fears that I would feel deformed after having the mastectomy, that I would - that I wouldn't feel myself, that I wouldn't want to be touched, that I would be embarrassed, that I wouldn't be attractive to men as a single woman that - you know, what could be less sexy than saying, oh, I had a mastectomy.
And many people in my life thought that I was being melodramatic, that I was suffering post-traumatic stress syndrome from my mother's death, and I was crazy to take this kind of extreme step.
MONTAGNE: You've had breast reconstruction. That's part of the treatment. Has it, in this last couple of years, affected or negatively all the things that you were worried that it would? I mean…
Ms. QUELLER: Thankfully, my fears were entirely unfounded. I feel completely comfortable and at home in my new body, and almost every woman I've spoken with - and I've spoken with many who've been through this - all agree that the very worst part was the fear, and it doesn't seem like that big of a deal on the other side. I feel completely normal, and I'm so grateful that none of those fears were founded.
MONTAGNE: One dramatic choice you didn't choose to make, at least for now, was to have surgery on your ovaries, and it was ovarian cancer that killed your mother. And you are also at high risk for that.
Ms. QUELLER: Yes. Well, I very much want biological children, at least one, and I'm now 38. Forty's considered a prudent age to remove your ovaries without terrible risk. So I have made the decision to have an ovariectomy at age 40, which means that if I want a baby, I have to have one now.
MONTAGNE: You know, the title of your book is taken from a Stephen Sondheim song, "Pretty is What Changes." Maybe I'll just let you…
Ms. QUELLER: Yes. The epigraph at the beginning of the book quotes the set of lyrics from which the title comes, and it's from a song in "Sunday in the Park with George." And the lyrics are: Pretty isn't beautiful, mother. Pretty is what changes. What the eye arranges is what is beautiful.
And, you know, what the eye arranges in the lyric is another way of saying beauty is in the eye of the beholder. It's - what someone values as beautiful may not be the surface prettiness.
MONTAGNE: Thank you very much for joining us.
Ms. QUELLER: Thank you so much.
MONTAGNE: Jessica Queller is the author of "Pretty Is What Changes: Impossible Choices, the Breast Cancer Gene and How I Defied My Destiny."
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