Consumer Involvement
Annie Ellis (in the center) - holding "big girl panties"
Photos and text used with permission of Annie Ellis.
“Sometimes you just need to put on your big girl panties and deal with it…”
I first read these words after being diagnosed in 2004 on the Association of Cancer Online Resources (ACOR) ovarian cancer listserve (now called SmartPatients). This online community was a place where a newbie, like I was, could learn about living with ovarian cancer from veteran survivors as well as receive support, information, and inspiration. We shared stories of laughter and relief over low CA-125s. We shared tears when someone relapsed, treatment failed, or a fellow sister died. I don’t know how I would have coped through two recurrences, three debulking surgeries, five chemotherapy regimens, and a clinical trial without support from my local survivor groups and this online teal sisterhood.
As another resource for support and information, I also participated in the annual Ovarian Cancer National Alliance (OCNA) conference. One of the highlights of the first OCNA conference I attended was the annual awarding the Cindy Owens Big Girl Panties. These enormous teal Big Girl Panties (BGPs) have been bestowed to women who face physical hardships with extraordinary grace and courage, help others find hope, and serve the ovarian cancer community. This tradition began when Cindy Owens was given a pair of supergirl big girl panties by her aunt, which Cindy then gave as a birthday gift to another survivor who had been struggling. I humbly became custodian of the BGPs in 2015.
Lynne Wendler
Photo used with permission of Helen Palmquist.
Receiving the BGPs gave me a chance to reflect on how much has changed since my diagnosis. I am enjoying an unexpectedly long third remission of over 8 years. This bonus time has allowed me to celebrate my 50th birthday, attend my daughters’ graduations, dance at their weddings, and meet my grandchildren—milestones that I didn’t think I would reach while I was going through my third recurrence. I have also had the amazing opportunities to serve as a consumer advocate and actively participate on the programmatic panel of the Department of Defense (DoD) Ovarian Cancer Research Program (OCRP). In addition, I’ve also been involved as a patient representative with the Food and Drug Administration, a National Cancer Institute Gynecologic Specialized Program of Research Excellence, and have partnered with doctors on research projects.
During the 2016 Ovarian Cancer Research Fund Alliance (OCRF) conference (post-OCRF and OCNA merger), I had the privilege of passing on the BGPs to Lynne Wendler. Lynne exemplifies ovarian cancer survivorship by dealing with the hand given and enjoying life, all while remaining connected to the survivor community by supporting others. She also has been known to encourage others who are managing recurrences to use available resources, such as learning from the tumor and seeking out clinical trial information. Lynne once posted in an online support community forum, “There's never been a better time in history to have ovarian cancer! There are more treatment options than ever before and many promising therapies in the pipeline.” Soon after receiving the BGPs, Lynne’s treatment options became limited and she made an empowered decision to enter hospice care.
It is for Lynne and all my teal sisters that I continue to serve the ovarian cancer community and engage in dialogue with researchers and clinicians in the search for more effective treatments and reliable strategies for early detection and prevention. There are many ups and downs on an ovarian cancer survivor’s journey, and many of us rely on each other in order to put on those big girl panties to get through bad days.
"Lynne died peacefully on 9/17/16 surrounded by her loved ones."
Last updated Thursday, December 5, 2024