Friday, April 13, 2018

I Lived It

The other day in the car I heard the song "I Lived It" by Blake Shelton.

...Oh, you think I'm talking crazy
In a different language you might not understand
Oh, that's alright
That's just the kind of life that made me who I am...

He is talking about his time growing up but it spoke to me too- it related to how I felt- and sometimes still feel - when I talk about my experience with cancer, let alone ovarian cancer, to those who have never had it. I know my life would’ve been different if I hadn’t had ovarian cancer, but I did, and this is the life I have now. I’ve written a book , lent my voice as a patient advocate, participated in academic papers as an author, attended and spoken at conferences- these are things I would never have had an opportunity to do. Now, I am invited to join a new project for women diagnosed with ovarian cancer, that will include building a community of women diagnosed with the disease to support and learn from each other.

The Ovarian Cancer Registry was started by Larry Maxwell, INOVA Gynecology Department as part of the DOD Gynecology Cancer Center of Excellence. Women with a history of ovarian, peritoneal, or tubal cancer are invited to join and contribute data through the Registry which is a type of clinical trial. Women in the study will also be surveyed for ongoing quality of life issues and have the opportunity to learn about new studies and new initiatives. With our combined voice, I am hopeful we will be invited to participate in formative work- to guide future research questions, clinical trials, and the education that we as survivors need and want. . To learn more about the goals of the registry visit to register or read the consent form please visit I am pleased to join this initiative as a blogger along with Annie Ellis, Teri Woodhull, Susan Leighton, and Kristina Abalos.

The Registry, is separate from, but supports Globe-athon, the global effort to end gynecologic cancers. Globe-athon hopes "to increase awareness of women’s cancer, address disparities, and transcend barriers (i.e. ethnic, racial political, geographic, financial, cultural and religious) through educational outreach, global community engagement, and by advancing research." Part of building this community is having ovarian cancer survivors share their experience and thoughts. Our blogs will be housed here; check this page to read the blogs that are posted to date.

In the future women will also have the opportunity to have more private conversations through a partnership between the Registry, Globe-athon and Smart Patients, an online community for patients and families affected by a variety of illnesses. I'll update you all when that partnership begins.

We have so much to offer each other and I look forward to being a part of this new world wide community of women.

Every Day is a Blessing!