Author Interviews
1:35 am
Tue February 25, 2014

'A' Is For Anxiety, 'G' Is For Guilt: The ABCs Of Breast Cancer

Originally published on Tue February 25, 2014 6:06 am

A few years ago, Morning Edition interviewed President Obama at the White House. At the time, it was a major news story, but there was another story going on behind the scenes.

Madhulika Sikka, now the executive editor of NPR News, had accompanied the team to the White House, and while NPR's Steve Inskeep was talking to the president, Sikka was waiting on a phone call from her doctor. She had been warned a few days before that the news might not be good.

Just minutes after the interview, the call came in: She had breast cancer.

Sikka writes about what happened next in A Breast Cancer Alphabet. It's less a memoir than it is a guide — one that works through the disease from A to Z. For example: "W" is for Warrior.

Sikka tells Inskeep, "I'm not a warrior. I'm a woman who had breast cancer." That language, she says, "wasn't right for me. It's not right for a lot of women and that is one thing I did learn by expressing this. I'm not saying that there aren't days when you are feeling like that, but it doesn't have to be the whole of it."


Interview Highlights

On "'G' is for Guilt"

There's no history of breast cancer in my family, so I think about what could have caused this: you know, eating badly or waiting to have your kids or being on the pill ...

I went through the list because you kind of start thinking, "Well, what did I do? How come this happened to me? I must have done something wrong." And there's a really good chance that you didn't. It's a cellular malfunction and it sucks, but it's a cellular malfunction. So that's one facet of guilt.

The other facet of guilt is people like to point out how lucky you are when you tell them your story. "Oh, you found it." "Oh, you have great doctors." ... And they're trying to make you feel better, you know, like "Oh, I knew someone who had this and it was terrible and you're really lucky." Yes, I guess, subjectively I was lucky, but I didn't need to get into sort of a competition with somebody else's cancer.

On "'W' is for Warrior"

I understand that it's helpful for a lot of people to look at their experience through that lens — that you have to sort of fight and kick its ass and all these sort of martial comparisons. ... I think that's the common approach. I think that that's what we expect of people. "Oh, you know, you can kick it."

And the reverse of that is if somehow you are unfortunate enough not to survive, that you didn't fight it, that you weren't a warrior. And that is not the reality either. It's a disease and I don't see that kind of language being used in the same way with so many other diseases, including, frankly, lots of other cancers.

On whether the experience of having cancer changed her

I pause because my first reaction is no, and it's a very visceral reaction because that ascribes something mystical to the experience of going through breast cancer and I just don't ascribe to that. Your life goes on. You've got to manage your disease and your life and your family and everything else.

On having realistic expectations of what it's like to have cancer

There was somebody who I knew who I thought, on the outside, "Wow, she's been amazing through this." And she revealed to me that, you know, you're gonna get up in the middle of the night and you're gonna feel awful and you're gonna look at yourself in the mirror and its gonna scare you when you look at yourself because you are bald and you have no eyebrows and your skin is, you know, sallow and gray and its horrible.

Thank you for telling me that. And I want to tell other people that. It's just: That's what it is.

On how she's doing now

I'm doing fine. I'm on drugs, which, you know, thousands of women are and the point of the drugs is to reduce the risk of recurrence. It's why I'm not a fan of the word "survivor," because I feel "survivor" suggest an end. I feel good, I have great doctors, I'm on drugs, they have side effects, but right now I don't have cancer.

On whether it will ever be over

No. ... My opening essay is "A for Anxiety." There's always a little bit of anxiety that will remain. You don't live in a permanent crouch of fear, but it's just somewhere in the back of your head and it recedes over time, but you have to be vigilant.

Copyright 2014 NPR. To see more, visit http://www.npr.org/.

Transcript

RENEE MONTAGNE, HOST:

A group of our MORNING EDITION colleagues went to the White House a few years ago to interview President Obama. Now, a sit-down with the president is always news, but there was other news of a more personal kind going on behind the scenes, and that's a story we can now tell.

STEVE INSKEEP, HOST:

The story involved Madhulika Sikka. She is now the executive editor of NPR News, and she went along with me as we recorded that interview and produced it for broadcast. Now, what I remember about that day was walking into the Oval Office, sitting with the president, then racing out to the White House press area. Her memories are different. What do you remember from that day?

MADHULIKA SIKKA: Quite a blur.

INSKEEP: A blur because as we were talking with the president, Madhulika was waiting on a personal phone call, a phone call from her doctor. She had been warned just a few days before that the news might not be good.

SIKKA: I said to my doctor, I said, well, I'm going to focus on this interview with the president, but you're going to get the results on Thursday rather than wait for me to hear from a radiologist on Friday, and as my internist, who's not a cancer specialist, she's like I'll - I'll find you.

INSKEEP: The doctor reached her by phone at the White House just minutes after the interview. She had breast cancer. Our friend and colleague has now written of what happened next in a book she calls "A Breast Cancer Alphabet." It is less a memoir than a guide, for others starting the process that Madhulika began. It works through the disease from A to Z. For example, letter G, which stands for guilt.

She asked, as many people do, if she brought the cancer on herself.

SIKKA: There's no history of breast cancer in my family, so I think about what could have caused this - you know, eating badly or waiting to have your kids or being on the pill.

INSKEEP: You've got a checklist here. Being a woman, guilty. Getting older, guilty. Genetic inheritance, not guilty. You went through the list.

SIKKA: I went through the list because you kind of start thinking, well, what did I do? How come this happened to me? I must have done something wrong. And there's a really good chance that you didn't. It's a cellular malfunction and it sucks, but it's a cellular malfunction. So that's one facet of guilt. The other facet of guilt is people like to point out how lucky you are when you tell them your story. Oh, you found it. Oh, you have great doctors.

INSKEEP: Good, it's only stage one or two and not four.

SIKKA: People love to - and they're trying to make you feel better, you know, like oh, I knew someone who had this, and I felt I didn't need to get into sort of a competition with somebody else's cancer.

INSKEEP: You're tempted to say to yourself, don't feel sorry for yourself, you know. Other people have it worse. But you're arguing, you don't need to say that to yourself.

SIKKA: You don't need to say that all that time and live that all the time. Yes, occasionally you can wallow. It's okay. You don't have to put on that brave face kind of thing that we've gotten used to in the whole sort of breast cancer culture.

INSKEEP: And when you mention breast cancer culture, the chapter on W is warrior, and I would imagine you can quote the first sentence of that chapter from memory.

SIKKA: I'm not a warrior.

INSKEEP: What do you mean?

SIKKA: I'm a woman who had breast cancer. I understand that it's helpful for a lot of people to look at their experience through that lens, that you have to sort of fight and kick its ass and all these sort of martial comparisons.

INSKEEP: Is that what the common approach is?

SIKKA: I think that's the common approach. I think that that's what we expect of people. Oh, you know, you can kick it. The reverse of that is if somehow you are unfortunate enough not to survive, that you didn't fight it, that you weren't a warrior. And that is not the reality either. It's a disease, and I don't see that kind of language being used in the same way with so many other disease, including, frankly, lots of other cancers.

INSKEEP: There aren't a lot of prostate cancer warriors out there, I suppose.

SIKKA: No, no. And they're not pink.

INSKEEP: Is there something self-defeating about that attitude or is it not just right for you?

SIKKA: It wasn't right for me and it's not right for a lot of women and that is one thing I did learn by expressing this, and I'm not saying that there aren't days when you are feeling like that, but it doesn't have to be the whole of it.

INSKEEP: Did the experience change you?

SIKKA: I pause because my first reaction is no, and it's a very visceral reaction because that ascribes something mystical to the experience of going through breast cancer, and I just don't ascribe to that. Your life goes on. You've got to manage your disease and your life and your family and everything else.

INSKEEP: The people in your life, their lives go on.

SIKKA: Other people in your life and their lives are affected by it and you find yourself wishing that everything was back the way it was.

INSKEEP: Listening to you, I'm realizing that it seems that you discovered that there is a wide range of expectations. People have all these ideas about what they should say to someone who has cancer, how they should feel when they have cancer, how they should respond to the treatment, what attitude they should take, and those expectations just didn't fit you, your personality or your life, and you found that a little annoying.

SIKKA: Yeah, I was a little annoyed, but I appreciated that once you start talking to people, you know, I had known people who had gone through it and it's like you belong to a little club, and you know, there was somebody who I knew who I thought, on the outside, I was like, wow, she's been amazing through this.

And she revealed to me that, you know, you're gonna get up in the middle of the night and you're going to feel awful and you're going to look at yourself in the mirror and its going to scare you because you are bald and you have no eyebrows and your skin is, you know, sallow and gray and its horrible. Thank you for telling me that. I want to tell other people that.

INSKEEP: People will want to know, so I'll ask. You look great. How are you doing now?

SIKKA: I'm doing fine. I'm on drugs, which, you know, thousands of women are, and the point of the drugs is to reduce the risk of recurrence. It's why I'm not a fan of the word survivor, because I feel survivor suggest an end. You know, you're diagnosed and you have your treatment so there's a beginning, middle and end. I feel good, I have great doctors, I'm on drugs, they have side effects, but right now I don't have cancer, so I have my hair back and more importantly, I have my eyebrows back.

So I feel...

INSKEEP: Kind of hard to wear an eyebrow wig, I suppose.

SIKKA: It's really hard to paint your eyebrows, actually, I discovered during that period.

INSKEEP: Will it ever be over?

SIKKA: No. I think - you know, my opening essay is "A for Anxiety." There's always a little bit of anxiety that will remain. You don't live in a permanent crouch of fear, but it's just somewhere in the back of your head and it recedes over time, but you have to be vigilant.

INSKEEP: Madhulika Sikka is the executive editor of NPR News and the author of "A Breast Cancer Alphabet." Thanks very much.

SIKKA: Thank you, Steve. Transcript provided by NPR, Copyright NPR.