Pink Ribbon Pushback

Three women with breast cancer answer our questions with wit and candor: Learn what not to say to a friend with cancer, what it’s like to be “Star Trek bald,” and why not everybody’s a fan of pink ribbons. 

“In the seamless world of breast cancer culture … ” writes Barbara Ehrenreich in “Welcome to Cancerland,” a 2001 Harper’s Magazine essay, “cheerfulness is more or less mandatory, dissent a kind of treason.”

There are certainly some reasons for cheer: A few decades ago, breast cancer was considered a shameful abomination, too stigmatized to mention even in obituaries. In terms of awareness and sheer volume of cash raised for research, the annual flood of pink ribbons every October can claim a victory.

But there are also defeats and draws. Where’s the talk about rising breast cancer rates, and their link to potential carcinogens in what we eat, drink, and breathe? Where’s the informed skepticism about the effectiveness of certain particularly draconian treatments … and insurance companies’ seemingly arbitrary decisions to pay — or not to pay — for them? And amidst all this relentless pink optimism, is there any room for a little healthy anger at a capricious disease and the terrible suffering it unleashes?

If the three outspoken, witty, and irreverent women we interviewed for this story are any indication, there is dissent in the ranks of breast-cancer sufferers — not everybody’s in sync with pink. We asked each of them to share the real stories of breast cancer, not the Hallmark card version they’ve been conditioned to tell.

These three say there’s a darker side to the pink “brand” — for them, the disease is a deeply personal experience, not a motivational poster cliché, a marketing opportunity, or a bandwagon to ride. It’s a club they never wanted to join. Their disease is not their identity, they say, and they don’t want to wear it, or any symbol thereof.

"Putting on a brave face" takes many forms; for Amy, Jayne and Sara, it looks like this: equal parts no-holds-barred honesty, laughter, rage and searing wisdom, with no fear of judgment.

Here are the women and their stories:

Stylist and motion picture costumer Amy Patterson, 37. Diagnosed at 35, underwent a double mastectomy and chemotherapy.

Publicist Jayne Rogovin, 52. Diagnosed last year with incurable stage four breast cancer. She has a 50 percent chance of survival after five years and must receive regular treatment at VUMC for the rest of her life.

Sara Baldwin, 42, heraldry artist and mother of two. Diagnosed in 2008 with stage two breast cancer, underwent a double mastectomy and chemotherapy.

What’s the problem with pink ribbons?

Jayne: It tries to put a nice pretty package on a terrible disease, in a Hallmark way. I think it’s wonderful to raise money for research, and I think it’s wonderful that we can talk about breast cancer now — thank you Betty Ford for that — but this whole Kumbaya, pink ribbon, let’s wear a shirt? Not my style.

And the other thing that pisses me off is people trying to make a buck off of our disease. Like makeup companies, they donate this product to the American Cancer Society for women to look good, but [it’s] filled with cancer-causing agents. So you have these companies giving you products that are unhealthy for you.

Amy: Last week I got a sandwich, and it had a pink ribbon on it. And I was like, “Really?” I don’t need a reminder every time I want to eat a sandwich.
It really is this marketing monster. Call and ask them, “How much do you really give?” It’s like three cents or something sometimes. Better than nothing, but … women think they’re out there supporting women, and [companies] are just  … using it to sell merchandise.

Sara: I think they’ve given a lot of people hope, and they create this sort of community ... But I never wanted to wear one, I didn’t want to be defined by cancer. For me, it’s irritating, a little bit. But I’m not against it. It’s just not for me.

On my first day of chemo, they gave me a nice little care package [with] pink ribbon this and pink ribbon that. I don’t know [why], it just infuriated me. They gave me a nice little blanket that I actually burned. I took a lot of the rage and anger that I felt at even being diagnosed out on that pink blanket. I didn’t want to have any part of it. And I still don’t. I’m not gonna go down the breast cancer bandwagon.

What pisses you off the most about this experience?

Amy: I felt like it was such an attack on femininity. The culture is so focused on breasts and blonde hair or whatever. We have such this stereotype of what women should be … I was large-breasted and [had] long blonde hair. When all that was taken away, everybody had to realize that that’s not what got me anywhere. It was humbling and very rewarding in a way. It’s very humbling to be bald.

Sara: That I could be robbed and my family could be robbed. I want to live. I love my life. I don’t want to leave yet. So it pissed me off that this disgusting, evil thing could sneak into my life and disrupt it in this way, potentially take it away. And hurt my children, hurt my family and friends.

Jayne: The health insurance that I had didn’t pay for most of it. So I ended up owing a lot of money to Centennial [for diagnostic procedures] … they wouldn’t accept my payment plan. My credit was 770, my credit’s now 525. And that’s one of the ugly sides of cancer.

About once every two or three months, I have a pity party, and it usually revolves around not knowing, the unfairness of it. And the hardest thing for me is to find a balance of living in the moment and planning for the future. And by the future, I mean five years from now. With what I have, there’s a 50 percent five-year survival rate. I call myself a “survivor” too, ’cause I’m not dead. And I don’t plan to be dead anytime soon.

What was the most surreal moment of having cancer?

Jayne: When I was first diagnosed with breast cancer. And then, it’s like “OK, I can deal with it.” And then when I was told over the phone it was terminal and incurable, I went to my knees, I was hysterical … It’s amazing how you just want regular breast cancer all of a sudden.

The hardest thing is just trying to live with it, always in the back of my mind, that I have this disease inside of me that will probably kill me one day. I mean, we’re all going to die sometime, but it’s a lot more difficult knowing and living with it, and it changes everything.

Oh, and losing my hair. I had a head of hair. Hair was my identity. It started to come out in clumps — it was awful, it was like mange. I had it shaved, and that was the most freeing moment. And here I am completely, like, Star Trek bald. And I looked, and I just went, “Me!"

Sara: Knowing that I could no longer exist on this earth. In a physical way. That is a heavy thing. I still can’t believe it. Honestly, the whole thing feels more like a dream. I even stopped shopping for awhile because I thought, “Well, I might diiieee [laughs]. Do I really need this?”

Also, I love gardening. I was like, “Oh my gosh, I may not see my garden completed and fluffed up and mature.” That was surreal.

Amy: I think at some point you just get really tired of doing this. Right before my surgery I had this major meltdown. I drank a lot of whiskey. They couldn’t take my blood, I had so much alcohol in my system. They threw me out of the hospital because I was so obnoxious and so drunk. I showed up in a leopard print coat. I don’t think I had a shirt on underneath it. My poor [friend] Mindy! I took off. I was hiding behind a bush. She had to catch me. It was awful. I totally acted out like a child. It was so bad! Pretty funny in hindsight [laughs]. I was like, “I am so sorry!” They were like, “People freak out before surgery, but we’ve never quite seen that before.”

[Breast reconstruction] felt like two plastic bowls underneath two sports bras that were too tight, because they kind of rub on your breastplate. I said [to Mindy], “I feel really weird calling them ‘my boobs.’ Because they’re not my boobs — they’re small and wonky. I want to call them something else. I think I want to call them ‘Mary-Kate’ and ‘Ashley.’” We almost fell out of the car laughing.

[On chemo] I lost all my hair. Everything was gone. There were a few hairs on my arms, I only had three or four eyebrow [hairs], but I was like, I don’t care. I almost would take a little hit of chemo once a month for the rest of my life if I never had to shave [laughs]. My skin was like translucent and soft like baby skin. I would go out in short dresses and my wig. I felt really sexy and sleek. I looked like 10 years younger, I think. They call it the “chemo glow.”

What’s the one thing people shouldn’t say to a person with cancer?

Amy: “Let me know what I can do to help.” If you want to do something, do it! Because then you’re putting this ball in my court. Sometimes you don't even have the energy to call and ask for things. Very frustrating.

Sara: Even though I’ve been through this, I don’t know what to say to people! That’s why I don’t hold anybody accountable for what they say. I’d rather people ask me really hard questions than tell me “I’m sorry” or “It’ll be OK.”

I was so impressed with the woman that asked me, “So what is sex like without boobs and no hair?” Now that is a good question. Nobody’s had the nerve to ask me. And I told her, “I have a really supportive, loving husband, it was, you know, like it’s always been.” He still wanted me. Thank God. [Laughs] Because that was very healing. I told him one time, “The fact that you want to be with me in that way when I look like this? Whew! Says a lot about you. It makes me feel so lucky.”

Jayne: Don’t say, “Oh, my aunt had it, you’ll be fine.” A lot of women aren’t fine. I know it’s cold and callous, but when people go, “Oh, you have cancer, what kind?” I come right out and say “Incurable breast cancer, stage four,” and that stops them from saying, “My mother, my aunt, my sister.” Because sometimes I’m really tired of being gracious! I feel like I have to be gracious and put people out of their discomfort. And for the most part I am.

Another thing? Don’t tell me about “this person drank this tea,” and “this person ate these apricots,” and go to this homeopathic … and you shouldn’t take chemo, it’ll kill you, and you should do this and you should do that.” I know you mean well. But it is my path. It is my choice.

Here’s another one: “You’re a fighter! You’re gonna beat this thing! I know you will!” How the hell do you know? I’m “fighting” as hard as I can. I eat organic foods, I cook everything fresh, I exercise, I do my yoga, I go to chemo. I’m living, not battling.

What’s the best thing friends can do for someone with cancer?

Jayne: The best thing that you could do for somebody like me is treat me like I’m normal.

Amy: Make the person laugh. Make fun of it. Don’t treat people like a victim.

Sara: I have one friend, Amy Hall — she rocked out loud. She would send me funny cards almost every day. She’d been through this about a year before, so she knew.

When you come to me, put on a happy face. I told my family and friends at the time I was diagnosed, “I don’t want any negativity around me. I don’t want your advice. And if you’re upset and you’re feeling negative about it, go tell somebody else. I’m a very spiritual person, and if you feel called to pray for me, do that. But I cannot do it myself, and I don’t really want to hear it.” I set boundaries immediately. I was very protective of my recovery and health, and it was the one time in my life that I think I’ve been purely selfish. But I had a job to do. I got really focused.

The takeaway?

Amy: It’s different for everybody. Chemo is such a scary word. Again, maybe I reacted well to it, [but] it wasn’t as bad as I thought. It’s hard going the first time, because you’re scared. And it then it turns into this routine.

Sara: I grew a backbone really fast. A much-needed one. I quickly discovered that life was too short to be living it to please others. I’m not trying to be morbid or dark, but we have such a short amount of time here. I mean without hurting anyone else, you’ve got to live your life for yourself. This is the only life we have. This is it.

Jayne: I’m very lucky. I have a “general” of my team, and her name is Kay West. [She] quoted I forget what writer: “Cancer doesn’t show you what you’re made of. It shows you what other people are made of.” In my case I’ve been very blessed that my friends and family and partner John are made of the right stuff. And that’s my takeaway.

What Not to Say and What To Do When a Friend Has Cancer

For more, see “‘You Look Great’ and Other Lies,” a New York Times article by author Bruce Feiler.

The Don’ts:
1. “You’ll be fine.” No one but the doctor can know that, and it doesn’t reassure anyone but the person saying it.
2. “Let me know how I can help.” Don’t put the responsibility on her to call you. Just do something that needs doing. Mow the grass. Wash dishes.
3. “You should try this kelp smoothie. It cured my Aunt Ethel.” Probably not. Your friend wants your love, not your advice.
4. “You’ll beat this. You’re strong.” Cancer isn’t a tennis match or an air strike. It’s a disease. Sometimes people don’t survive it, no matter how hard they “fight.” And that’s not on them.

The Dos:
1. Make her laugh. In lieu of advice or banal reassurances, come bearing smiles, jokes and gossip. Distract her for a few minutes from her illness. She knows you’re upset; she doesn’t need to see it.
2. Contact “The General.” For status updates, call your friend’s information broker — her “General.” That person will fill you in and suggest ways to help.
3. Ante up. Sneak some cash to “The General,” anonymously, to help out with those bills that are piling up. Your friend won’t have to feel beholden to anyone or write 100 thank-you notes.
4. “I love you.” That’s really all you have to say.

Photos by Gina Binkley