Question: What is Cancer Schmancer and how did it get its name?
Answer: Cancer Schmancer started out as a New York Times Bestseller that I wrote after my battle with cancer because I didn’t want what happened to me to happen to other people. It took me two years and eight doctors to get a proper diagnosis, and when I went on my book tour I realized that what happened to me has happened to millions of Americans by means of misdiagnosis, mistreatment, and as a consequence to that, very often … late-stage diagnosis with cancer. So I started speaking publicly and becoming a health advocate in Washington, and everybody would ask me well, “How can I help you? I wanna help you.” So it became obvious to me that I needed to start a movement and galvanize women, educate them, empower them and … alert Capitol Hill that the collective vote is louder and more powerful than the richest heath insurance lobbyist. The name Cancer Schmancer came from … my ex-boyfriend who was the one that really helped me through my battle. … We all knew immediately that that was it, because it sounds so much like me and it also says that cancer is not the boss of me.
Q: Does it help to laugh in the face of cancer by saying something like that?
A: People say that it has gotten them through some very, very dark moments and became a mantra for them to make them empowered ... that cancer is not the boss of them.
Q: What has been your role in the organization?
A: I’m the visionary and the president.
Q: What have you liked most about your work with the cause?
A: Well, I love that … I turned such a negative into a positive. … I love that I’m turning lemons into lemonade. … I love the life lesson that … turning pain into purpose heals. …I love that I can help people and people come up to me and say, you know, … “I got a mammogram. I insisted on getting one even though my doctor said I was too young ‘cause I read your book … And I love that I’m empowering women and I love that we together are going to shift the course of women’s health history at the beginning of this twenty-first century.
Q: Your book and this organization were written and founded after your personal struggle with cancer. Had you ever considered supporting cancer-awareness efforts before your diagnosis?
A: I was predominantly involved in … AIDS issues. I was a big supporter…and still am of course. Everything that I was involved with I still am. But right now I’m trying to give a very clear and focused message of what the Cancer Schmancer movement is about. I don’t want to dilute that message at this time by showing up for too many other things. But, I still am a big supporter of the Elton John AIDS Foundation of course and the Glaser Pediatric AIDS and … Bobby Kennedy Jr.’s Water Keepers Alliance, the NRDC, Stop Global Warming, the Creative Coalition. Arts in Education is a huge platform of mine, public education. … I’ll always show up for an event like that and walk a red carpet and stuff for those events to bring focus to the cause. But my twenty-four-seven preoccupation is in starting a revolution in the way we think about women in society, the way we think about women’s health … the way women think about themselves and what needs to change both in legislation and in our hearts and minds.
Q: Would you say your activism has changed since your own struggle with cancer?
A: Yes, I have spearheaded a movement. Whereas I always supported other people’s activism now I am I am a leader for a cause.
Q: What does your organization do to make women who may not know anyone who has been diagnosed with cancer aware of the need to get tested and to be active about informing other women?
A: One great thing is having the Cancer Schmancer movement available on the Web site. … We offer information, we ask you to join, it’s free to join and then I’m constantly sending to the members news, requests for petitions, updates on what we’re doing on Capitol Hill so, and links to other health Web sites for people to learn more about their health and particular diseases that could affect them. … I go on television, national television, radio, in print. We’re doing PSAs now on radio and over the summer we’re going to produce a celebrity PSA for television to reach women who are not necessarily computer savvy but do have access to television. And we’re also going to develop another tier to the organization which will be to connect with non-English speaking women and the woman who are really just trying to make ends meet -- the under-insured and the uninsured -- trying to drive them to free clinics in their communities.
Q: Is going to Capitol Hill your number one priority right now?
A: Well there are a lot of wonderful organizations out there raising funds to try and to promote research to try and find cures. But as we all know cures are few and far between and I believe that this policy-changing movement is the missing link. Prevention, early detection and … and policy changing is what is going to narrow the margin on women’s mortalities due to late stage diagnosis.
Q: Have you had one experience working with the organization that sticks out in your mind?
A: There was … a woman who said that she had to get a double mastectomy and she was only in her late 20s and she had two young sons and a husband. And they had said she was too young for a mammogram, but she said she wasn’t too young because she read my book… and they used Cancer Schmancer as a mantra. … She’s a neighbor of my girlfriend and when we were going out one New Year’s Eve my girlfriend said, “You know my neighbor who’s been battling breast cancer all year is having a little New Year’s cocktail party and …it would mean the world to her if you stop by.” And I said, “Of course.” So, and I brought my book, and when I walked in she said, “Oh, I’ve already read your book and let me tell you something: There were times when I wanted to just break down and cry when I was on chemo and my two young sons were playing on the living room floor and I would look at my husband and my husband would look at me and with a choke in …our throats we would say, ‘Cancer Schmancer.’”
I repeat that story a lot because it really meant so much to me and I know what she felt like. It’s a very dark time when you’re battling cancer, or it can be, and anything that you can hang onto that’s like a life saver for you that pulls you out of the darkness and into a place of hope. ...
I also love quotes. … Emily Dickenson wrote a poem called “Hope” and … in it she writes, “Hope is that thing with wings (feathers) that perches on the soul, and sings the song without the word, and never stops at all.” And Frederick Douglass, a great American, said, “Power concedes nothing without demand -- it never has -- and it never will.” … I remember that when I wanna go up against big corporations that are … prohibiting women from getting certain tests as part of their basic health care or products, women’s products that right now are not held up to industry standards. So we’re going to tackle the big boys and not because there’s a big financial profit margin at the end of it, which unfortunately is a great reason why so many things are developed nowadays. … For us it will just be to save lives.
Q: One last question: How are you feeling today?
A: I feel great. I celebrated my seven-year anniversary of wellness yesterday, and that it is on June 21st, the summer solstice, and poetically the longest day of sunlight. So we’ve made the icon for the Cancer Schmancer movement a sun with the number 6-21 in it because that was the day that I was cured of my stage one cancer. And as Robert Browning said, “Make your grasp greater than your reach, else what’s a heaven for?”
Interviewed by Giacinta Pace of NBC News.