Mon October 22, 2012
Going Beyond The Pink To Talk Breast Cancer
Originally published on Tue October 23, 2012 9:03 am
MICHEL MARTIN, HOST:
I'm Michel Martin and this is TELL ME MORE from NPR News. Now, it's time to go behind closed doors. That's the part of the program where we talk about things that are usually kept private or are just hard to talk about. Today we're going pink. You might have noticed that this month is more pink than others. That's because October has been designated Breast Cancer Awareness Month. And if you tune into Monday Night Football tonight, you'll notice players wearing pink gloves and towels and shoes. And even if you don't watch sports, you've probably seen magazines and restaurants and other businesses go pink. Even the Empire State building in New York was lit up pink this month.
We have nothing against the color, but we wanted to get beyond the pink and talk to women who actually have or have had breast cancer. We just wanted to know about their struggles, their hopes and what they want other people to know about the illness. So I'm joined now by Elaina Markina. She was diagnosed with early-stage breast cancer earlier this year. She's a contributor to VOXY.com. That's a Latino news and commentary site. She also writes for Mamiverse.com. That's a website for Latino parents. Ann Silberman writes the blog But Doctor...I Hate Pink. She has an advanced stage of breast cancer. And Claudean Nia Robinson four years ago. She is now in remission and she wrote about her experience in the new book "I Forgot to Cry." We should mention, she's also a former colleague of ours at NPR.
Ladies, thank you all so much for joining us. I want to say to you all, I'm in awe of all of you and your courage and what you've been through and your willingness to face it and talk with us about it. Thank you all so much.
ANN SILBERMAN: Well, thank you very much for having us.
CLAUDEAN NIA ROBINSON: Thank you.
ELAINA MARKINA: Thank you very much for having us.
MARTIN: Elaina, you are the most recently diagnosed of the group. And I want to say I'm sorry, but is that what you want to hear?
MARKINA: No. I'm sorry. No. Actually nobody has said I'm sorry so far. It's been nine months now and it's the first time I hear this, so I'm a bit surprised. People ask how you're doing? How are your kids? How are you coping? But I'm sorry, Hmm, I don't know.
MARTIN: You don't know what to do with that, even.
MARTIN: Ann, what about you? You have stage 4. And...
SILBERMAN: Stage 4. Yeah, I'm at the terminal stage.
MARTIN: Yeah. And the same thing. I want to say I'm sorry, but is that even something you want to hear?
SILBERMAN: Yeah. I'm sorry is going to say because there isn't really much else to say. The things that you shouldn't say are if there's anything I can do let me know. Or how did this happen? Anything that puts the blame on the cancer victim is the wrong thing to say. But how are you doing is fine and I'm sorry this is happening to you, those are fine things. But then you take your cue from what the cancer person has said. Some of them don't want to talk about it and some will talk about it, and then you can go from there.
MARTIN: And I have to say taking my cue from you, your blog is hilarious.
SILBERMAN: Oh, thank you.
MARTIN: A recent post was about a phone call to your son. You were screaming into the phone.
MARTIN: He thought you were having an emergency but it's because you had stepped on a bug.
SILBERMAN: That's right.
MARTIN: And I just, I'm sure a lot of people are wondering how are you able to maintain such a positive attitude? Do you think it's just that's just the way you're made or is that something you can teach yourself to do, or?
SILBERMAN: So I think it is the way I made. But it's also a deliberate decision. There is absolutely nothing I can do with the fact that I have terminal cancer. I'm doing all the treatments that I can be doing and what I'm left with is the light that I have to live, and I can choose to live in two ways: I can sit and cry and, you know, not do anything and just feel sorry for myself, or I can go out and live and see all the wonderful things there are out there in the time I have left. And that's what I've chosen to do.
MARTIN: Claudean, your book is called "I Forgot to Cry." Where did that title come from?
ROBINSON: "I Forgot to Cry" came after I had finished all of my treatments and I realized how exhausting that whole journey was and I realized that I was going through the motion, trying to balance work life, family life, and then there was me with the circumstance I was faced. And as I began to write, the tears started flowing. I'm saying, where is this coming from? And I realized one night as I was sharing a paragraph with my husband and I was crying, I said, oh, my goodness, I forgot to cry.
MARTIN: Experience, though, as a woman, you are still very preoccupied with taking care of everybody else and so therefore, you kind of forgot to cry about your own situation? Is that part of it?
ROBINSON: Yes. Absolutely. Absolutely.
MARTIN: Can I ask the other ladies about that too? Elaina, I'll start with you. Your daughters are 9 and 5. You're in the active parenting phase. Is it hard for you to...
MARKINA: Yes. Yes. Actually I agree. I can still take care of my kids. I forget about myself all the time and I think that's the best. For the time being, I can still do that. I take care of them. It's like they don't even know this is happening to me, actually. I kept it from them. I know you're not supposed to do that. You're supposed to be honest about this but, I don't know, it just sort of happened this way. I tried to see how things were going and I went through chemo, it wasn't too hard. I just finished radiation. It wasn't that hard. So I just don't know what happened and I can take care of them, I can forget about it. I'm very lucky, I guess.
MARTIN: Ann, what's the - do you mind if I just go right there with you?
MARTIN: What's the hardest part about this whole thing?
SILBERMAN: Well, for me it's definitely my children. And, you know, I've had to tell them I'm going to die. And I was hoping they would be able to operate again on my liver, where my cancer is, and they are not. So I had to tell them that it's going to be sooner rather than later, and that's something so difficult. As a mother you want to protect your children from harm, you don't want to be the one causing them harm. But I had to tell them. Having them know I think is better than having it come out of the blue. I've been on chemo for three years so it's hard for me to do a lot of things, and I'm not cooking every single day anymore and I'm not able to go on every field trip or everything. My youngest is 15. And so I've had to kind of gradually let other people take that over, and I guess that's natural with my stage. But it is absolutely the hardest thing. You know, causing your own kids pain, it's just, it's hard to describe.
MARKINA: That's the hardest, I think. I can't even tell them I'm sick so I can't imagine what you're going through. Mm-hmm.
I would miss not being there for them so much. It's the first thing I would think. Yeah. I know.
SILBERMAN: You do. And I've mourned that.
SILBERMAN: I mean on mourning my life while I'm still alive, which is a strange thing to say, but it's what I'm doing. You know, I'll never see my grandchildren. I'll never...
You know, my goal is to stay alive for my son's graduation and after that, you know, whatever happens, hopefully I'll be alive longer than that, nobody knows, but you know, you just mourn all those things that you just naturally believe are going to happen, and they're not.
MARTIN: I'm talking with three women who have or have had breast cancer. I'm speaking with Elaina(sp) Markina. She's joining us from Spain. Ann Silberman - that's who was just thinking just now. And Claudean Nia Robinson.
Ann, one of the other things you wrote about in the blog is some of the gossip at work surrounding your illness. You said that people you hadn't told would come up and hug you. I'm sure on the one hand people are being - trying to be nice. On the other hand, I think it would be annoying if people you don't know are all in your business.
SILBERMAN: Well, when I was first diagnosed, I was going to keep it a secret. I wasn't mentally prepared to let people know. I told my boss because I thought that she should know I was going to be going to so many doctor's appointments, and I think she told some people and it spread out. You know, I don't think she did it on purpose, but it spread out and suddenly everybody is coming up and - how are you, and big hugs, and it was difficult. But I knew at that point it was out, I had to tell people, and so I, you know, made up a humorous email and sent it out. That way - I think once people know, then it's easier for them to know how to treat you, but when they're not sure, they think something terrible has happened.
MARTIN: Claudean, you were nodding your head in recognition. Tell me what you were thinking about just now.
ROBINSON: Yes. What I was thinking about, I on the other hand am very transparent. I really saw my journey as an opportunity to give back to women who were experiencing a similar journey as mine. I really took this as an opportunity to live each day in the moment really well, not knowing my cancer had advanced from stage I almost a stage IV - cancer was in the lymph nodes and all. So I really had to keep my life in perspective in a way that I was living the moment, you know, not only for myself, family and friends, and so I kept mine on a really upswing.
MARTIN: But you know, I have to ask you too, though, that as I understand it, you lost your job a few months after you were diagnosed. So is the financial side of this a big worry? Were you...
ROBINSON: At first it really was. It was a big worry and I'm like, oh my goodness, it was unexpected. But somehow, because I believe in faith, we've made it thus far and I'm still not working but I'm living the passion and purpose of what I feel I'm meant to do now, going down the breast cancer path, and that is to support other women.
MARTIN: And Ann, I have to ask, you know, your blog is called But Doctor...I Hate Pink.
MARTIN: Why is that?
SILBERMAN: Well, when I found out I had breast cancer, I realized I was going to be drafted into this pink world of survivorship and balloons and runs, and I was so not interested in any of that. I just wanted to live my life and not be associated with all this breast cancer joy. And the longer I've been dealing with breast cancer, the gladder I am I named my blog that. I am not happy with Koman. I'm not happy with the concept of awareness. Very few dollars goes towards research to cure us. It goes towards mammograms to help people find their cancer and then nothing once they find it. And it's, the whole thing is upsetting, the way it's been handled. It's just a big marketing tool. And people slap that pink ribbon on everything they have to sell, not even necessarily donating money towards anything. But when they do, it doesn't really go towards anything that's going to help metastatic women, and it's frustrating.
MARTIN: Yeah. Enough - your attitude is like enough with the pink. Let's cure this thing.
MARTIN: Let's deal with - Claudean, what's your take on the pink?
ROBINSON: I've never really liked pink but I love it now because of what it stands for. It brings support to women that sometimes don't always have the information or the economical background to get sufficient treatment that they need. It brings on such an awareness within the community and for each other, and so the pink, I think, stands strong. Personally, don't like the color for wearing, but I certainly will be a part of that...
SILBERMAN: Well, I'll wear the pink, but I...
ROBINSON: It's bigger than that for me. It's so much bigger than the color.
MARTIN: I think you look good in pink.
ROBINSON: Thank you.
MARTIN: Elaina, what about you? Is there a big pink thing going on in Spain?
MARKINA: Yes. There's big pink in Spain and almost everywhere. I think so many countries do this pink October Breast Cancer Awareness Month now. But I have to agree with Ann. I'm not a fan of the pink ribbon. I think the use of the ribbon should be regulated somehow so consumers who buy stuff with a pink ribbon really know where their money goes. I'm not a big fan of the pink ribbon, I have to say. I'm sorry.
MARTIN: I'll just say in defense of the pink, I think what Claudean was saying is that for a lot of people it opens the door to something that otherwise would be so scary. Like for example, in my parents' generation, people didn't even acknowledge that they had cancer, didn't even talk about it. They called it the Big C. You know, I didn't even know what that was growing up, and I think for some people, at least it makes it OK to talk about, so I think there's that piece. But...
ROBINSON: And that is the opportunity. As I am mentor and coach for newly diagnosed patients and survivors, they're glad to make that connection. And the process can be so heavy and daunting. And not to have any support around you and to do this journey alone can be very, very heavy; very, very depressing. And so the women that I mentor are just so glad to connect. It means something. It means that you're not alone. And it means that you can do this.
MARTIN: I understand that we have different perspectives on this and I'm grateful for that.
MARTIN: We have a couple of minutes left so I was hoping I could get, if each of you has a final thought about what you'd most like people to know. One of my former colleagues and a friend who had cancer - he's a man - said that cancer was like visiting a country that you didn't want to visit and then suddenly you're there. So I just wanted to ask a final thoughts from each of you. Is there something that you would like other people to know that they may not know? Elaina, why don't you start.
MARKINA: What's your diagnosed, it is like you're living in a parallel universe somehow, that you never want to be here and never want to visit. Yes, of course. It suddenly makes it so real and it feels so unreal before. It's something that never happens to you. It never happened to anybody near me. I had so little information about this before. I think my last word would be that we need to go beyond awareness, educate ourselves, educate our children, all the women in our families. If there's anything we can do to reduce risk, maybe lifestyle choices, eating healthy, exercise. There's not much we can do but if there's anything we can do, to definitely do that. And especially with children, I think. I'm so worried about my two girls.
MARTIN: Claudean, you want to add a thought?
ROBINSON: Yeah. What I'd like for people to know is that you're your biggest advocate with your body. Know your body. Always get regular checkups. If there's something suspicious, a lump or something different, please right away go to your doctor. If it persists two weeks after, please go seek help. If you are a patient, be sure that you match yourselves with the facility and the professional care that's a good fit for you so that you'll feel comfortable in asking any kind of questions. And I felt a lot of the healing came through my being able to reach out there and embrace other women and shared my journey so that if it should happen to a friend of theirs, they will feel that I'm not alone and I can do this.
MARTIN: Ann Silberman?
SILBERMAN: Well, I want to talk to newly diagnosed women. I know that you're all afraid that you're going to end up like me, stage IV. But you have to realize that 80 percent don't. And I want you to give yourself permission once your treatment is over, to believe that you've been healed and move on. So many women live breast cancer years after their treatment is over, and I really don't think that's mentally healthy or emotionally healthy. I think that to become a true survivor you have to move on from this experience. You know, our attitude is everything. All the worry in the world you do today does not affect anything. It just makes you loose today. Whatever happens happens. So try to enjoy every single day you have, because they're all beautiful, there's something funny in every single one of them. And I would highly encourage everybody, whether you've had cancer or not, to try to live their life that way.
MARTIN: Ann Silberman is a blogger who has breast cancer. Her blog is called But Doctor...I Hate Pink, and she was kind enough to join us from Sacramento, California. Claudean Nia Robinson was diagnosed with breast cancer in 2008. She is now in remission. Her new book is called "I Forgot to Cry." And she joined us in our Washington, D.C. studios. Elaina Markina is a freelance journalist who also has breast cancer. We caught up with her in Madrid, Spain, where she lives with her family.
Ladies, I thank you all so much. And once again I am in awe of each of you and I'm going to be keeping a good thought for each one of you - pink or not.
ROBINSON: Thank you.
SILBERMAN: Thank you so much.
MARKINA: Thank you so much.
MARTIN: And that's our program for today. I'm Michel Martin and you've been listening to TELL ME MORE from NPR News. Let's talk more tomorrow. Transcript provided by NPR, Copyright National Public Radio.