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Profile: Breast cancer survivors share their experiences

October 19, 2004 from Day to Day

NOAH ADAMS, host: It's DAY TO DAY from NPR News. I'm Noah Adams.

If you've seen a lot of people wearing pink ribbons this October, it's because that's the symbol of Breast Cancer Awareness Month. Breast cancer will strike as many as one out of every seven women in America; that's according to the American Cancer Society. Today, producer Dmae Roberts brings us the testimonies of three women who are battling the disease.

Ms. CAROLINE ACUNA-GUILARTES (Breast Cancer Survivor): My name is Caroline Acuna-Guilartes. I have Mexican heritage, but I also acknowledge the indigenous blood, the Indian blood, the Aztec blood, within being Chicana. I was diagnosed in '94. I had an aggressive cancer called medullary cancer, and they said it was very fast-growing and aggressive and they wanted me to do chemo and radiation because I was so young. But I opted for ancient medicine instead of Western medicine. So I've been doing and surviving on ancient medicine for 10 years.

Ms. MONICA BENSON-BARROS (Breast Cancer Survivor): My name is Monica Benson-Barros. I'm a 42-year-old African-American woman. I have one child who's 18 years old. July 2003, I found out I had breast cancer. At the time, I was eight weeks pregnant and felt a mass under my breast. And my breasts are large, so it's very hard to tell when I have my personal checks. But this mass was really large and it didn't move like a lot of breast tissue is real grainy; this was different.

Ms. MARIA PASCU (Breast Cancer Survivor): My name is Maria Pascu. I am 48 years old, and I came from Romania to United States. I was diagnosed with the breast cancer on April 2000, and now I am in remission.

Ms. ACUNA-GUILARTES: I decided to go the alternative route and use ancient medicine, so I was trying to get away from the fear that comes along with the disease. I feel that Western medicine uses a lot of fear tactics to scare you into doing what they want you to do.

Ms. BENSON-BARROS: But first, the doctors told me to come back in six months because they thought it was just from under-wire bras, that maybe it was just tissue. I made them do a biopsy, and it was cancerous. So meanwhile, I've been going through the treatment. I'm not pregnant anymore; I've miscarried. And I had a lumpectomy and also 14 lymph nodes under my arm removed. So now I'm having chemo treatments once every two weeks.

Ms. PASCU: Something was wrong, I was very tired and sleepy and on my left breast was some pain. And I go to see the doctor, I do all the tests, including mammogram, and they came positive. So they proposed to me a few choices to do just the mastectomy of tumor, or the one which I choose then, to do both sides mastectomy and do chemotherapy for almost one year each week.

Ms. ACUNA-GUILARTES: There's this bias that I think goes on in Western medicine, particularly around the radiology. And they think that people with darker skin can take more radiation. And I sat with a woman who had had breast cancer and she heard the radiologist say, `You can double the dose because of the melanin in her skin.'

There has consistently been racism as part of science and particularly as a part of Western medicine. Looking at the bias in regards to women, too, and then lesbian on top of that, it's, like, I wanted to really take back the power. I didn't want to have to answer to a predominantly white male establishment of `What do I need next? Do I need chemo or radiation? Do I need this, and do I need that? You know, you tell me what I need, Doctor. You tell me what I need.' And that's not where I was going to find the power for myself. I was going to find it by listening to my ancestors and to the spirits that exist around us, find it in ancient medicine, in the wisdom of Ayurvedic medicine, in the wisdom of acupuncture medicine, the wisdom of herbal medicine. That felt like it was going to empower me to really step in and say, `You know what? I'm going to take control of my body.'

Ms. BENSON-BARROS: The financial part is hard because most women try to continue to work during chemo, and these treatments make you ill. But fortunately, I was able to get on disability, which is only 800 a month. But that was my biggest fear is I went from making, you know, 60,000 a year to a lower income. African-Americans, we don't have finances sometimes to get better health care. I don't think we go to doctors as much as wealthier races do.

Ms. PASCU: It was kind of cold reaction from my husband, which actually he was so scared and afraid because I'm going to die. And in order for him to avoid connection with me, he was most of the time going to work away from home. And when finally he figured out I'm going to survive, he was happy, but he make me to suffer a little bit.

Ms. ACUNA-GUILARTES: I think that there are environmental reasons. I grew up around strawberry fields in Southern California, and they did a lot of pesticide spraying. So I feel like that has a huge cause. I think we live in a very polluted environment, polluted by people who are not accountable to the pollution. I also think that rage is also a part of it, rage in the heart and grief, you know. I know I carry grief in my life, and I think part of that, that grieving process and how it sits here in the heart, you know, it really affects our entire body.

Ms. BENSON-BARROS: Black women tend to be--they want to be very strong, but this is a time where you have to be weak and let somebody help you. And I've had, like, family and friends--it's like they back away to protect themselves. I've had people tell me, `Oh, you need to juice all your vegetables,' or, 'You need to do this alternative treatment in Tijuana.' And I think a lot of it is people are afraid of their own mortality and they're afraid that you may die, so they kind of backed up. I had a woman tell my daughter that her mother and sister died from cancer and that radiation treatment doesn't do any good, because I have to have radiation after my chemo treatment. So I think people should just be careful what they say because every individual is different and you never know what you are going to go through or how you'll react.

Ms. PASCU: You need to correct your thinking, your mind, and teach yourself to fight and to not allow the cancer to do something.

Ms. ACUNA-GUILARTES: The women have been socialized to kind of slough off the women's intuition. `Oh, it's just women's intuition.' That women's intuition is, like, the basis of our power, and so to really listen to that and to really take time and listen to that. Ask people to take your kids for a couple days and take two days to yourself at least, away by yourself, alone with nothing around you but yourself so you can hear your intuition, because it's always there.

Ms. BENSON-BARROS: And you go through different moods; sometimes you're happy and sometimes you're sad. And it's easy to put up a front, that, `Oh, I'm happy,' you know, because you'll have your wig on or your makeup when really you feel terrible. Just the support should just be for the person that has cancer. Let them feel their feelings without you taking on the feelings for them. You know, if they want to be sad, let them be sad. And the survivors that I've met, they said, `All of this will pass,' but when you go into the doctor's every day and you're getting shots and you don't feel well, it's hard to think this will go on forever. The support system--you have to have one.

Ms. PASCU: I remember when I start the first chemotherapy, I believe after one week I start losing the hair. And I say, `No, I'm not going to let the cancer to do that to me. I will cut my hair myself.' So I cut my hair myself with my husband, crying, but I don't let the cancer to do that. And I buy myself a wig and I put my wig on my head and I say, `Not the cancer take away my hair, just myself.' So don't let the cancer do to you what he want; do yourself to the cancer. Treat him like a illness and take him away from you.

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ADAMS: Dmae Roberts produced our story, along with Miae Kim and Ancha Micheti. It comes to us from the folks at Hearing Voices.

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ADAMS: This is DAY TO DAY from NPR News.