Transforming Health Care through Innovative and Impactful Research

In 2014, I was working as an Executive Assistant at my local university, incubating a home-based bakery, selling my pastries at a weekend greenmarket, and taking a college course during my lunch hour. I was very busy and happy.

I was also tired all of the time. But I could explain it away.

My busy schedule also meant that, more often than not, lunch was a bag of potato chips and dinner was pizza. Of course I was bloated.

I was 47 years old and at a time in my life when my period being “different” wasn’t too unexpected. I could explain that away, too.

At least six months before my diagnosis of stage 2c high-grade serous ovarian cancer, I had symptoms, but I did not pay attention to them.

Bloating, fatigue, and changes in periods are easy to explain away.

But another symptom was not so easy to explain away, and it is this symptom that both scared me and sent me to my gynecologist. I started “wetting” my pants. In the space of three weeks, the fluid turned bloody. The cough that I had for months was now so bad that I could not bend over or lie flat without a coughing fit.

My gynecologist did a manual exam and felt “cysts on my ovaries.” She ordered blood work and a transvaginal ultrasound. When my blood work came back, my CA-125 was 1550. She called me into her office and explained that I would need to have a “no questions asked” hysterectomy and see a gynecological oncologist. I was not ready for this news. I remember trying to bargain with her to keep an ovary.

I believe her swift action and the skill of my surgeon were the first steps in saving my life.

After surgery, I found out my first symptom really was the bloating that I had. My abdomen had filled up with fluid (ascites). I was slender, and a close friend and my husband both knew that it was odd-looking. I found out later that I had the cough because the fluid in my abdomen pressed on my lungs. A hard coughing spell one day caused a pleural effusion in one lung.

After recovering from surgery, I had six rounds of chemotherapy. I now know the standard treatment I received was experimental when a friend, a fellow survivor, was diagnosed 30 years ago. The most unexpected side effect of treatment was “chemo brain.” I always had an excellent memory, so this was distressing. It took a year of hard work to regain 100% of my cognitive abilities.

Today, I celebrate nine years of “No Existing Disease” (NED). Serving as a Scientific Consumer Reviewer is a privilege because I feel I have been given a rare opportunity to work with and meet scientists and researchers who spend long, earnest hours seeking to eliminate ovarian cancer and improve the quality of life for survivors. It is inspiring and humbling to know this work will improve lives and advance understanding of and unravel the mechanisms of cancer.

It is also a privilege to serve as a way to honor one lost to this disease. During my treatment, I met a stranger who became my friend. She was in continuous treatment, never reaching NED, but that did not stop her from helping me and many others or from serving as a Consumer Reviewer. I serve in her honor because she no longer can. I serve because my survival is a gift that many women will not have.

I share my story here in the hope that it will inspire others to become involved as reviewers. I hope also to inspire students and researchers to know the importance of your work. Your discoveries have made it possible for me not only to survive, but to thrive! Since my recovery, I married, began a career as a philanthropic executive raising money in higher education, and serve in the Ovarian Cancer Research Alliance program, “Survivors Teaching Students.” We meet with third-year medical students to raise awareness of early detection.

It is not possible to celebrate my nine years NED and not acknowledge the scientists and researchers that I will never meet who made my survival possible. I serve to, in some small way, honor their contribution and represent those who have lost their lives to ovarian cancer.

The views, opinions, and/or findings contained in this paper are those of the author(s) and should not be construed as an official Department of the Army position, policy, or decision.