In the winter of 2002, I was a healthy retiree, living in Kenton, OH. My husband and I were vacationing in Florida when my life slowed down enough for me to notice some strange things happening to my body. I felt some mild, menstrual-like pelvic cramps, and thought that was weird at age 67, but they were so mild I thought it was my irritable bowel syndrome. I noticed that my waist-bands were getting tighter, but I wasn’t gaining weight and I was still working out at the gym, so I decided it was an aging thing. When I sat down for a meal I felt full after eating only a few bites, then would be hungry again in an hour, but wrote that off to “shrinking my stomach” while watching my diet. I never dreamed that I was experiencing three of the classic, most common symptoms of early stage ovarian cancer. Like most women, I didn’t know that ovarian cancer had symptoms, let alone what they were, so I wasn’t worried about these unusual body changes. I blamed everything on age and diet.
A couple of months after our Florida trip, I had a minor surgical procedure for stress incontinence, and during that procedure my doctor did a thorough pelvic exam. She felt a large mass in the area of my left ovary. A CT scan confirmed it and she referred me to a Gynecologic Oncologist (GynOnc) for surgery. I still wasn’t worried because no one in my family had ever had ovarian cancer. Also, my GynOnc told me that 90% of these masses were benign and nothing he could feel was suspicious. And even better, the radiologist’s report from the CT scan suspected a cyst rather than a malignancy.
The frozen section during surgery also said it was not malignant, but they were all wrong. The final lab report, shared with me three days later on my way out the door of the hospital, confirmed ovarian cancer. Although my grapefruit sized tumor was at Stage I, meaning that it had not spread beyond the ovary, it ruptured during surgery, so my doctor recommended the routine six rounds of chemotherapy. That was a tough choice – 80% chance I was already cured or 95% if I did the chemo. I finally decided it was worth the risk of possible long-lasting chemo side-effects for the comfort of knowing I had done everything possible to avoid a cancer recurrence. My 12 grandkids definitely influenced my decision to do the chemo.
In 2002, most people my age weren’t in the habit of doing internet research about medical issues, and I was no exception. Because of my doctor’s reassurances, I failed to do my homework and therefore I didn’t know to ask about my CA125 test number. I later learned that no pre-surgical CA125 blood test had been done. Had I known to ask for the test results, I‘m sure it would not have been overlooked. Because of this, I had no way of knowing if it even worked for me – I had to assume that it did and that my periodic CA125 tests checking for recurrence were valid. But, that feeling of uncertainty was always there.
When told of my cancer diagnosis, I pretty much went emotionally numb. I didn’t cry, get angry, or feel depressed – I just went numb. I felt very blessed that I had an early stage cancer, which is rare, and everyone was very positive and hopeful, so I was, too. However, a few months after I finished chemo, a mild depression did set in. I had expected to be exultant when chemo was over so I definitely had not expected this. I know now that it’s common to be depressed and scared after finishing treatment – you feel that you should be doing more to fight the cancer, but there’s nothing else to do, and it’s frightening. Finally, my emotional numbness was wearing off and I could start to deal with what I’d been through. A month or two later, I had a scare about a possible lung metastasis. After waiting a couple of tense weeks for the test results, I learned that everything was fine – and that’s when I totally lost it. Finally, the numbness and depression were gone and my feelings were back to normal. Since then, I’ve had a colon scare and a breast scare. I know there will be others, but hopefully I’m now better able to handle them. You learn to deal with these scares and try to keep a positive outlook. That’s just a part of life after cancer.
I have three pieces of advice for people undergoing cancer treatment. First: keep moving. All my life I’ve hated exercise, but I’ve been going to a gym three times a week since I retired at the end of 1995, and I continued during chemo as well. I’m absolutely convinced that my exercise program is why I recovered from surgery and chemo as quickly as I did, even though I hated every minute of it (and still do !). I know I have to do it. Second: keep busy. To give me incentive to get up, get dressed, get out, and do something useful during chemo, I quick ran to our local hospital and got a volunteer job in a one-person hospital office, away from other people (protecting me from my chemo-caused low immunity) and which permitted me to work when I felt well enough to do so. You can’t sit around and think about cancer all day. Third: carefully select your doctor. If you don’t have a good relationship with or confidence in your doctor, change doctors. It’s a very difficult decision to make, and I don’t suggest this lightly, but occasionally it’s your best option. You must have confidence in your doctor and feel s/he is the best person to take you through this challenging journey. Your doctor is your employee and you have the right to hire and/or fire him or her. I did, and never regretted it.
Shortly after completing my treatments, we moved to Columbus to be nearer our kids and grands. I immediately started looking for local ovarian cancer agencies, but could find none. I learned that Debbie Banchefsky had run the local NOCC group for several years, but had decided that it was time to move on with her life, and the group had become inactive. When Katie, Jay and Sherri started it up again a couple of years later, Debbie told them to call me, and I joined them immediately. This was what I was looking for, and helping get it started again gave me the opportunity to turn my cancer experience into a positive asset. For the next five years I spent most of my time working with the local NOCC group and doing health fairs and teaching women the symptoms and risks of ovarian cancer.
When NOCC changed its philosophy and its business relationship with its local chapters, we made the difficult decision to break away and form the Ovarian Cancer Alliance of Ohio (OCAO), an independent non-profit awareness and education organization. After a couple of more years with the OCAO, I gave myself a 75th birthday gift of my second retirement. I was a survivor, and it was time to spend more time with my husband of 51 years and my 12 grandchildren.
That was five years ago, and I’m thrilled to see how OCAO has grown and the difference it’s making in awareness of ovarian cancer.