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Finding the right words in ‘A Breast Cancer Alphabet’

March 6, 2014 at 6:34 PM EST
“B” is for breast. “I” is for indignity. “K” is for kindness. In “A Breast Cancer Alphabet,” NPR’s Madhulika Sikka has written a candid guide for patients, friends and caregivers to prepare and cope with that disease. She joins Judy Woodruff to share lessons from drawn from her own experience.
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GWEN IFILL: Now: a candid guide for patients, friends and caregivers to coping with cancer.

Judy Woodruff recently recorded this book conversation.

JUDY WOODRUFF: Getting a diagnosis of breast cancer is something no woman wants to hear, but, in December 2010, Madhulika Sikka, the executive editor of NPR News, became one of the 250,000 American women who every year get just that word.

Her new book, “A Breast Cancer Alphabet,” is an A-Z primer full of personal and practical advice for women with breast cancer and their families and friends.

And, Madhulika Sikka, welcome to the program.

MADHULIKA SIKKA, Author, “A Breast Cancer Alphabet”: Thank you, Judy.

JUDY WOODRUFF: So, as we said, you were diagnosed just over three years ago. You went through surgery, chemotherapy. Now you’re just leading as busy a life as you ever did.

MADHULIKA SIKKA: I am.

And that’s — you don’t think that that can happen when you first get diagnosed, but, for a lot of women, that does happen.

JUDY WOODRUFF: But you also say in the introduction, you said, no one told you that it was OK to cry uncontrollably or OK to be angry or even to acknowledge out loud that it’s a real bummer.

You said — I’m going to quote here — you said that women with breast cancer are expected to be upbeat, but — quote — “hard-assed and martial in their attitude” about the disease.

MADHULIKA SIKKA: I think there is something that has been built up around the culture of breast cancer that focuses on that.

And, for me, the implication of that is that, is if you struggle through it, or if, unfortunately, you don’t make it through, that somehow you didn’t give it your all, that it’s your fault. And I just don’t subscribe to that.

It’s a horrible disease with really horrible treatment. And it’s OK to say that.

JUDY WOODRUFF: And that’s part of the reason you wrote the book. You — I mean, with all the literature out there about breast cancer, you thought there was some — this — there was a need for this?

MADHULIKA SIKKA: Yes. I started writing mostly for myself. It was sort of cathartic for me to write how I felt.

And as I talked to other people and I talked to other friends who had gone through breast cancer, we felt the same about a lot of things. And there is a sort of camaraderie in being able to share that. And it’s not a medical book. I’m not a doctor. It’s about my real experience that many people I have spoken to have felt some resonance.

JUDY WOODRUFF: You start — it’s literally A to Z. You start with anxiety, which, it turns out, is a really big part of this.

MADHULIKA SIKKA: It is, and it starts even before you’re diagnosed. It starts when you get that call or that letter that says, come back, let’s look at your mammogram again, or other efforts before you even get there.

And anxiety is different from fear. It just lives with you all the time. And, sometimes, it’s at the forefront and, sometimes, it’s at the back. And you have to calibrate it and you have to sort of figure out how you deal with it at different turns in your treatment.

JUDY WOODRUFF: B is for breast.

You say, all of a sudden, you find yourself engaging in matter-of-fact conversation with your brother, your male colleagues, maybe even your neighbors, about a part of your body you never, ever would have discussed with them before.

MADHULIKA SIKKA: Yes.

It’s the funny thing about breast cancer. Even though, in our society, I think breasts are sort of fetishized, in your daily life, you’re not really talking about your breasts. But here you have a disease that’s all about your breasts. And people know what is going to happen to you.

If you are going to have surgery, they know that you are going to go through something disfiguring with regard to your breasts, not something I talked a lot about.

JUDY WOODRUFF: There is so much I want to ask you about, but you really are, Madhulika, brutally open about — there is one — I is for indignities about what one goes through.

MADHULIKA SIKKA: There’s a lot that you have to go through. And lots of women who don’t have breast cancer have at least gone through a mammogram.

That’s not very pleasant. The amount of poking and prodding, and when you have surgery, you are disfigured in a very painful way. It all hurts. And it all makes you feel angry and upset, and it’s OK to feel that way.

JUDY WOODRUFF: But you also write — you write about many aspects of this, but you also write about the importance of the people around you and what they can do with you, for you and how that makes a difference.

MADHULIKA SIKKA: I wrote K is for kindness, because kindness abounds.

(LAUGHTER)

MADHULIKA SIKKA: And I think the most important thing to do is, when people ask you, what can I do to help, stop and think, not too long and not too hard, figure out what you need, and ask them to do it for you.

JUDY WOODRUFF: G for guilt. I guess I was surprised at that one.

MADHULIKA SIKKA: There are multi-facets to guilt, because first — the first thing you think about is, I did this. I did something wrong that caused my breast cancer.

And, you know, most of the time, you didn’t. And it’s — you have to work your way through that. So I was surprised that chapter has actually — a lot of people have really reacted strongly to that chapter.

JUDY WOODRUFF: But there is also a lot of humor in here, Madhulika.

(LAUGHTER)

JUDY WOODRUFF: There are great stories about people you have talked to, what it meant for your hair, looks, makeup, all those things that are just a very practical part of going through…

MADHULIKA SIKKA: And they are a real part of breast cancer in a way that they aren’t for other cancers for men.

And I have had friends who have gone through — male friends who have gone through cancer. And, you know, whether we like it or not, hair, makeup, looks, all those things matter for women.

JUDY WOODRUFF: And you said even your doctors are thanking you for writing this book.

MADHULIKA SIKKA: Yes. My doctors have been amazing. And it made them think about a few things that they hadn’t thought about before. So, I hope it — it continues to do that.

JUDY WOODRUFF: Madhulika Sikka, setting a good example for so, so many American women, women everywhere, thank you.

MADHULIKA SIKKA: Thank you, Judy.