How old were you and what was your life like when you were diagnosed with cervical cancer?
I never thought about cancer when I was 31. I was happy, healthy, married and totally excited about my future - I was pursing my dream of being a full time Rock Star. It was going well. Really well, until I went in for my pap. After 13 consecutive normal yearly paps, this one came back abnormal. Within a week after further tests, I got the news - invasive cervical cancer with extensive lymphatic invasion. Impossible. Me? Cervical Cancer? Ten days after my diagnosis I had a radical hysterectomy, then laproscopic surgery, then 5 weeks of daily pelvic radiation concurrent with 4 rounds of chemo and then 3 rounds of internal radiation. Then came the depression. I felt like I lost everything. Eventually I realized I did NOT lose EVERYthing, just some bits and pieces. So I put myself together with the pieces that were left, and decided to use my story, my experience, my music and my voice to get the message of cervical cancer prevention out there - I wanted to educate and empower other women.
How has the experience of being a cancer survivor shaped your thinking? (If at all).
Cancer changed my life, there's no way of getting around that. I became acutely aware of how precious each and every moment is and the power we all have as individuals to make choices and to live every day intentionally For me, that means doing what I love, making music, and making a difference through my work as an activist. The "gift" of cancer has been this incredible clarity in my heart and in my head about what REALLY matters.
Tell me about your organization, especially what inspired you to start an organization and what you're most excited about for the future of your organization. What motivates you to keep sharing your stories and what achievement are you most proud of?
The Yellow Umbrella Organization started out as PopSmear.org (pop music and pap smears, get it?!?) in 2002, and the message was simple: "Ladies, don't blow off your yearly pap. Have a conversation with your doctor and make sure you are getting the BEST pap out there. And if you are 30+, ask for an HPV test with your pap. And men, go tell the women you love." It's that simple to keep your cervix smiling! And what happened at the first concert and the 88 to follow is that people listened! The more I sang and talked about my story and how we can DO something about this cancer, the more people talked about it - in the papers, magazines, on the TV and the radio. When I did the first show I never dreamed that I would be running an organization, traveling around the country and still talking about it over 5 years later, but that is what happened and I feel just as passionately as I did at the first show. The Yellow Umbrella Org is excited about continuing the message through music and collaboration (say- something.org), as well as expanding our sites to include a network of organizations who are all working in the fight against cervical cancer. As for the achievement I'm most proud of, I have to say kicking cancer's ass!!! = ) Cancer helped me see how strong I really am. I never knew, but now I see the power an individual has to get from the dark into the light, and I will never forget that. And also, I have to say, I have the most incredible opportunity coming up next month when I get to open for Sheryl Crow at the Ulman Cancer Fund for Young Adults fundraiser!!! Now THAT is a dream come true, and something I think I will be proud of for the rest of my life. FOR SURE!!!
In the past couple of years, the story of HPV and its prevalence has really emerged, partially due to the emergence of the HPV vaccine and likely a variety of other factors, including the work of organizations such as your own. Did you know anything about HPV before your diagnosis? If not, what information did you learn about it after?
I had never heard about HPV before I was diagnosed and I considered myself an educated, proactive young woman because I never missed a pap or physical or anything like that. So when I was told that it was from sex, at first I was horrified and embarrassed. But then, as I learned more, I realized that it was nothing to be ashamed about at all. I learned that it is virtually ubiquitous, that it's not a sign of promiscuity or infidelity, that it is usually a transient virus and that the danger mainly exists when you have a persistent infection. And then I learned about the different screening tools - the pap and the HPV test. I never knew that the pap was measuring for cellular changes (dysplasia) caused by HPV, I only knew that I had to go every year. I also did now know that the pap can have a false negative rate of up to 50%, which means it tells you you are "fine" when you are not. My docs think this is what happened to me, that the pap missed me year after year, and it wasn't until the office switched to a liquid (more sensitive) pap that it caught what was happening. At this time, 2002, the HPV test had just come out. It is a DNA test that tells you if you have HPV and are at risk for cervical cancer. When I wrapped my head around all this information, I just knew I had to share with as many people that would listen because it could help save women's fertility and women's lives. With the vaccine, there's just more and more to talk about and more we can do. It's a very exciting time.
Many of our readers may be thinking of getting the "catch-up" HPV vaccine for women aged 19- 26. Do you know if you need to be screened for HPV before you get the vaccine? And more generally, what would be your personal advice to a younger woman who is not sure about whether or not to get the vaccine?
My understanding (and every woman should talk directly to their doc about this) is that one does not need to be screened for HPV prior to getting the vaccine. Even if you've been exposed to one strand of HPV, Gardasil covers 4 strands, and therefore you will have protection against the others. Soon there will be another vaccine available, Cervarix, so there will be more choices for young women. As far as my personal advice, it's a no brainier. 3 shots are better than a hysterectomy. Trust me! I think women need to use EVERY tool and do EVERYthing they can, because remember, I did go for my pap every year and it still missed me. It wasn't enough. So I say, use everything we've got. Shots are better than chemo. No joke.
How can we all help to spread the word about HPV, cervical cancer, and women's sexual health? Are there additional resources that your organization offers that you'd like us to know about?
SAY SOMETHING!!! Honestly, that is the way we are going to beat this disease, by talking about it. By women educating one another. By men telling the women they love, by roommates telling each other not to blow off their pap, by sisters telling sisters to get the HPV vaccine. That is what you can do to help! The stigma attached to HPV and women's sexual health is very real and we are the only ones who can break down the misconceptions. We have the power. We have the technology to prevent a cancer. Let's do it.
For more on the Yellow Umbrella Organization visit www.theyellowumbrella.org
This interview was originally featured in YWTF’s bi-weekly e-newsletter, Younger Women’s Movement, on February 20, 2008.
You can sign up to receive the Younger Women’s Movement at www.ywtf.org
The Younger Women's Task Force (YWTF), a project of the National Council of Women's organizations, is a nationwide, diverse and inclusive grassroots movement dedicated to organizing younger women and their allies to take action on issues that matter most to them. By and for younger women, YWTF works both within and beyond the women's movement, engaging all who are invested in advancing the rights of younger women.
Through its 8 chapters, YWTF members are working to: 1) Provide a stronger voice in the policy making process for women in their 20's and 30's; 2) Increase the impact of younger women activists through the articulation of, and collaboration on, a common agenda; 3) Create a culture of inclusion where decision-making and power are practiced collectively, and members from diverse backgrounds participate in all levels of YWTF; 4) Define and develop the next generation of women leaders; and 5) Create a local and national network for peer mentoring, networking and sharing resources.
To find out more about YWTF, please email Shannon Lynberg at shannonL@ncwo-online.org
The Younger Women's Task Force (YWTF) is proud to announce the 2008-2009 Alexis Geneva Knox Fellowship in support of Younger Women's Leadership, Scholarship, and Advocacy.
This 12-month fellowship will be awarded in June of 2008. The fellowship will provide 1-3 younger women with a chance to pursue artistic, activist, skills building, and/or career advancement opportunities as well as financial assistance, mentoring, and professional leadership consultation.
About the Fellowship
The Alexis Knox Fellowship is an innovative national program designed to support younger women as they build their leadership capacity and support the YWTF community.
The Alexis Knox Fellowship is named in honor of Alexis Knox, a founding member of YWTF and a younger woman whose leadership potential was cut short when she past away in 2006. Still, at 22 years old, Alexis was a seasoned activist at Barnard College and in her volunteer work. She was the first to register for YWTF's founding meet-up, served as co-director of the YWTF NYC Chapter and was an integral member of our community. She will be greatly missed and in establishing this Fellowship, her commitment to women's leadership will live on.
Fellowship Fund: Selected fellows will receive a grant from the Alexis Knox Fellowship Fund of $1,200 to $3,000 to support leadership activities through individual and collaborative projects. Fellows are encouraged to pursue activities that enhance their public leadership skills, reach diverse constituencies, and build community. The Fund also offers fellows the opportunity to collaborate with others within the YWTF community and expand their work beyond their specific chapter city.
Fellowship proposals must directly support the YWTF community. The activities must support younger women and must be inline with YWTF's mission, vision, and values.
Application and Selection Process: All applicants who are active YWTF members must receive a recommendation from their Chapter Director. Applicants who are not active members must attend a chapter meeting, interview with the local chapter director, and submit a letter of recommendation. Applicants who live in cities with no YWTF presence must submit two letters of recommendation. You can download the full application at www.ywtf.org. All application materials must be submitted via email by 5:00PM on May 19th. YWTF Knox Fellow applicants will be reviewed by the YWTF National Coordinator, the Coordinating Board, and the Advisory Board. Selected applicants will be notified in the month of June 2008. Additional contact may be made with fellowship applicants during selection process.
If you have any questions regarding the Knox Fellowship, contact Shannon Lynberg, National Coordinator, at shannonL@ncwo-online.org or 202-293-4506.