Speaking Out Works
As an ovarian cancer survivor it took a long time for me to tell my story. Now it’s hard to get me to not talk about it. Not everyone is comfortable sharing their story. That’s all good, and I understand that, there are still some parts of my cancer experience that are too personal to share. Every survivor has a story and this is mine.
Ovarian Cancer crept into my life with illusive persistence. At the time of my diagnosis I had already endured months of pain and anxiety. My relationships were changing and my emotions were in a constant state of turmoil. It is little wonder that this disease is sometimes called the silent killer. For a year I suffered all the classic symptoms of ovarian cancer abdominal bloating, nausea, indigestion, feeling full quickly, pelvic or abdominal pain, and constipation. I was back and forth to my PCP thinking that, "Maybe this is something serious." I'd also spend hours reading online about symptoms, get overwhelmed, and decide I was making a big deal out of nothing. I believe that if I knew about ovarian cancer, the symptoms and the lack of diagnostic testing, I would have been more vigilant and realized that the changes in my body were not "silent" but were there to make me pay attention. It wasn’t until attending a Lunch & Learn at my job sponsored by the Georgia Ovarian Cancer Alliance and getting one of their risk and symptom cards did I know something was seriously wrong.
My diagnosis came on March 17, 2006 after having my left ovary, fallopian tube, omentum and appendix removed. When I woke up from surgery, my Gynecologic Oncologist told me that I had stage 2c ovarian cancer- a rare form called a germ cell (endodermal yolk sac) tumor. The next four months were tough for me and everybody around me. I'm one of the ones who didn't get too overwhelmed by my treatment program. Don’t get me wrong chemotherapy sucked but it was manageable. I had three twenty-one day cycles of the worst chemo drugs imaginable BEP (Etopiside, Bleomycin and Cisplatin). All of my hair fell out and I always nauseous and tired. I had some pretty rough days; depression and anxiety are to be expected, and I was no exception. My life as I knew it would never be the same again, no matter the outcome.
I never planned on becoming an ovarian cancer survivor because, like most people, I never planned on having ovarian cancer. I did my best to stay positive, and I kept telling myself that I had plenty for which to be thankful - after all, mine was an early stage cancer, NED (No Evidence of Disease) was extremely likely, the treatment had been easier than I expected... But chemo still sucked! I was also grieving the loss of an ovary (and fertility), the loss of the future I wanted, my hair, the time it was taking for my hair to grow back before I could feel like me again... I felt like my life had been put on pause to deal with cancer. I wondered if I had caused it somehow, and how would I make sure I didn't get it again? As I began adjusting to my new life as an ovarian cancer survivor, I began to look for ways to deal with the new me.
Now ten years later it's mind-boggling how far removed from my ovarian cancer diagnosis I am but yet how close I remain. I still can't believe that was me, chemo bound, bald and scared out of my mind. I don't ever want to lose my connection with ovarian cancer, I hate it...but I love who I've become because of it. There are still those moments that I get that sinking feeling. Even as I write this, my mind is racing and the tears are flowing...I'm okay now, yet there was a real chance I wouldn't be. Having a disease like ovarian cancer has provided me an opportunity to evaluate my life. It also affords me an opportunity to think about my relationship with God. I grew-up a Southern Baptist, but being told you have ovarian cancer put new meaning into those prayers that can sometimes become customary. Someone once asked me to explain to them how I could believe in God. As I sat thinking I was like, hey that’s not something I can do. If you’re looking for the logic in belief, it’s not there, but I do know that God cares for me and that He has a good place awaiting me when it’s my time to go. I credit God, my medical caregivers, my family members and my own stubbornness for my survival of this disease. I truly believe that this cancer journey/war has been a blessing. My biggest blessing/supporter has been my husband of twenty years, Erik. He has been with me every step of the way from connecting my IVs, driving me here and there, and pushing me at times when I had no will. All of this has not been without a few choice words from both of us, but no one has been privileged to have more love than I have.
When I think about this ten-year cancer journey/war, I realize that even with the ups and downs, the surgeries, and the chemotherapy side effects, I’ve gained many blessings out of this journey/war. This cancer journey/war is mine, no one else’s. I’ve fought it and I own it. I’m going to keep talking about it through advocacy as long as God allows me to do so. Advocacy has given me a tool to continue fighting this disease, not only for me but for those women who have lost their battle, those women who are recently diagnosed, those women who may be at risk and those women who are at risk and don’t know it. This is not to say that advocacy is preventive, because I have lost friends who were just as passionate and committed to this cause as I am. I am only saying that it has helped me. Speaking out works - by getting involved, breast cancer survivors increased funding for breast cancer, which has led to new treatments and tests that are saving more lives than ever before. We are doing the same in the ovarian cancer community. As advocates for ovarian cancer we are educating women and some healthcare providers about ovarian cancer, changing public policy, raising research dollars and making a difference!
So for all of you who want to know why after ten years I’m still talking about ovarian cancer…as the current president of the board of directors of the Georgia Ovarian Cancer Alliance (yes the same organization that did that Lunch & Learn full, circle moment); I intend to continue to repay this gift I was given in hopes that I can prevent what happened to me from happening to other women. I want all women to be aware of the symptoms of ovarian cancer. I will continue to raise my voice and share my story because; ovarian cancer or any form of cancer doesn’t deserve to suck all of the life out of you, your family and friends.