“I don’t think anyone is prepared for the call when it happens. I can still hear my call as clearly as day. “I’ve been trying to figure out all morning how to tell you this… you have ovarian cancer; it’s aggressive; we need to get you to an oncologist quickly.” I was just 36 years old. I was a healthy, single mom of two young children. This can’t be happening to me, is all I could think.
Looking back, I should have known I was sick. I was beyond exhausted, losing weight, and unable to eat. I had lower back pain and heartburn for a few months prior to being diagnosed, followed by pelvic pain and UTI-like symptoms. I went to the ER for a UTI I couldn’t shake, and they discovered two large masses on my ovaries. It wasn’t until a week after surgery performed by my OB/GYN to remove a “dermoid cyst” that I thought was ‘no big deal’ that I found out I had high-grade serous ovarian cancer. The news came by telephone.
How had I gone these many years without knowing that anyone with ovaries could be diagnosed with ovarian cancer? You don’t have to be a certain age, race, or ethnicity; you simply need to have a pair of ovaries. That’s it…just be born female. I knew nothing about ovarian cancer at the time, except that, more times than not, the prognosis wasn’t good. How was I going to beat this? I needed to be here for my children.
Within two business days of hearing those words, ‘you have cancer,’ I’d meet with my lead oncologist. Four days later, I was undergoing a full debulking procedure where they’d perform a full hysterectomy, including the cervix, remove my omentum, and thoroughly check the rest of my abdominal cavity, including my bowels. I would be left with a 13” incision down the middle of my abdomen, in full-fledged menopause, hanging on to the words my oncologist would tell me – “I think we got it all; it appears to be an early-stage diagnosis.” Two weeks later, I’d learn that despite only having an 18% chance of being diagnosed in the early stages, I was one of the ‘lucky’ few. I’d also learn that I had endometrial cancer as well, resulting in the medical team deciding that six rounds of chemotherapy (a combination of Carbo and Taxol) would be needed versus the four that we had once contemplated. On July 3, 2017, I received my N.E.D. report: No evidence of disease! To date, I’ve been fortunate and recurrence-free (someone knock on some wood for me!).
Often, I’m asked two things immediately when someone hears of my diagnosis: “Were you not going to your annual exams?” and “Do you have a genetic mutation?” Their reaction to my answer to the first question is one of shock, and I’m sure I looked the same – your annual exam doesn’t screen for ovarian cancer, and there is no preventative screening test in place at this time. And, yes, I do have a genetic mutation, but unfortunately, at this time, we don’t know exactly if or what cancer(s) it may be responsible for. Not only do I carry it, but so do my father and his mother. Each of us has been diagnosed with hormone-related cancer, and because of that, I opted to have a preventative bilateral mastectomy 18 months after my initial diagnosis. These are hard decisions to make and ‘easy’ decisions all at the same time – I keep thinking of doing everything I can to live for my children.
The diagnosis changed my life. It made me realize how ‘lucky’ (and let’s be clear, no one is ‘lucky’ to get cancer!) I was to have been diagnosed in the early stages; it woke me up in a way nothing else could have. It made me a stronger person than I ever knew was possible, and it has given me a voice that I won’t stop using until more women stand a fighting chance against this disease. Creating awareness is key; most people don’t know the signs and symptoms of ovarian cancer.
I don’t think I’d be the person I am now without being diagnosed over 5 years ago. You learn that life is about perspective – if it’s not life or death, or it’s not going to matter in 5 years, let it go and move along. I’ve lived more fully in the last five years than I had in the years prior to being diagnosed – summiting two 14,000 feet mountains in Colorado, crossing the Grand Canyon from Rim to Rim, hiking state-side, completing a Century Ride for cancer research, just to name a few. Why didn’t I do all these things before? Because I didn’t think I could. But once you face cancer and go through all that it entails, you realize you can do just about anything, so you try, and you allow your adventures to grow.
So why did I join NOCC TEAM TEAL and the Mount Kilimanjaro HOPE to New Heights team? Something about being diagnosed with ovarian cancer as a young adult causes you to realize a couple of things – one of them being “you don’t really have time” to put things off, so you’d better start living now, AND because you didn’t know the signs/symptoms, that it could happen to someone your age, AND that your annual pap smear didn’t screen for this cancer…you find your voice and you start sharing your story, so that others will know. Every year since being diagnosed, I push myself to do at least one challenging adventure a year. It’s my own way of reminding myself that I am ‘bigger’ than cancer and that I am in charge.
‘Why,’ you might ask – ‘why not’ would be my response. Why not support my sisters in teal by raising money while doing something I love, climbing to the tippy top to see the world? Dollars raised for the NOCC support national programs and local market initiatives to heighten awareness of the subtle signs and symptoms of ovarian cancer, assist newly diagnosed patients and those in recurrence throughout the country, provide ongoing support to caregivers, and advocate for the advancement of ovarian cancer research. My goal is to raise $19,341 to represent the number of feet to the top of Kilimanjaro – I will climb to remind myself to live life to the fullest and to instill hope in those diagnosed that we CAN beat this disease, and we are willing to go to all ends of the earth – or to the top of a mountain – to have the world hear us!
Randalynn lives in St. Louis, Missouri, with her son and daughter, and when she is not training for her next adventure, she hosts a podcast, “Sips with Survivors,” to further awareness and education on ovarian cancer.
To learn more about her and donate, visit her fundraising page here.