Marilyn’s Story

by Marilyn H.
This is my little girl, Emily. She’s a dancer, a golfer, a skier, a reader, a traveler, a dreamer. We had so many plans for becoming women together. But this picture was taken shortly before I was told that I had cancer, it was terminal and there was nothing anyone could do for me.

This is my little girl, Emily. She’s a woman, a bride, with a fabulous husband, a burgeoning career and plans for becoming women together with her own daughter one day. And, yes, that’s me standing right beside her. For fifteen years I have lived with cancer – an initial diagnosis of breast cancer in 1996 and repeated recurrences of ovarian cancer since 1997. I have had ovarian cancer in my ovaries, uterus, recto-sigmoid, diaphragm, several soft tissue locations and in my liver twice. And because medical science could not explain my survival, it was dismissed by most as just some “anecdotal piece of good luck”. Well, I learned very early on that no ovarian cancer patient survives on luck alone. That with a medical system that defines some 90% of us as terminal on the day we’re first diagnosed, I had to find those remarkable doctors and nurses and scientists who truly believed that incurable ovarian cancer does not have to be terminal. That it can be a chronic disease, one with which a woman can live indefinitely, not guaranteeing a full life-span maybe, but making one a real possibility.


I also learned that transforming Terminal Ovarian into Chronic Ovarian requires a lot more than belief. It requires the knowledge, skills and courage to abandon the familiar succession of increasingly ineffective chemo drugs in favor of the targeted medicine of personalized treatment plans. And that means basing all treatment decisions upon specific objectives, the best available information about the mechanisms of action and resistance of cancer therapies as well as the clinical history and the unique molecular and genetic tumor blueprint of each individual patient.

When I first started out there was no available information about how to do any of this. The mechanisms of cancer drugs were a mystery to most clinicians back then. And until the Clearity Foundation opened its doors, there was no access to tumor blueprinting for women with ovarian cancer. But now my doctors know exactly what’s inside my cancer cells. They know if known targets for certain cancer therapies exist. They know if there are specific genetic mutations already correlated with better or worse survival from specific cancer drugs. They know the changes taking place inside my cancer cells over time. And that’s a lot more than they knew yesterday and enough to make some very educated guesses about which cancer drugs offer the most promising mechanisms for destroying my cancer cells.

Certainly, there are questions that still need to be answered about the best use of cancer blueprints. And in the cancer world, answers emerge a lot quicker in the laboratory than they ever do in the clinic. So there’s no telling if those answers will emerge in time for me. But my little girl, Emily, and I are looking forward to years more of womanhood together. Because what The Clearity Foundation is offering us right now are genuine possibilities. And what is Hope without them.