The symptoms started when I was about 53 years-old and were seemingly unrelated and vague: heavy bleeding and irregular periods, lower back pain, chest pain, dizziness and, finally, gastrointestinal pain, bloating and discomfort. I pursued each symptom with my doctor and the relevant specialists, but each of these symptoms seemed to have an explanation: age, menopause or diverticulosis. But in the fall of 2018, when I was 54, the gastrointestinal discomfort and bloating were bad enough that a doctor suggested a CT scan. I got the call late on the same day as my scan. Doctors found a large mass in my abdomen and strongly recommended I see a gynecologic oncologist as soon as possible. They feared it was cancer.
After that, everything moved so quickly that I barely remember the timeline. My sister had heard of a female surgeon who was known to be exceptional. I was lucky enough to get in to see her quickly. She was honest and direct. One of the first things she said to me was, “I know you don’t want to be here.” At that point, I didn’t know what I wanted. I was still processing being in an oncology office. But the surgeon was firm in stating that, whether this mass was cancerous, it was large and “unfriendly” and needed to be removed. Surgery was scheduled for about ten days later. Rather than a biopsy, a tumor sample was sent to pathology during my surgery. It was determined that I had malignant fallopian tube cancer, and that it was stage 3 (fallopian tube cancer falls into the category of ovarian cancer). I remember groggily waking up to that news after surgery and still wondering how this could be. Yet oddly, I wasn’t that upset about it. When you get news like this, you go into shock. You don’t fully process what is happening, and you don’t yet understand the odyssey upon which you are about to embark.
My surgeries included a hysterectomy and an appendectomy. They were deemed a success. Chemotherapy was recommended to mop up any remaining cancer cells. Within weeks, two chemotherapy ports were inserted. One was in inserted into my chest and one into my abdomen. Through these ports, I would receive two different and potent chemo drugs (Cisplatin and Taxol) every three weeks. I was told this was an aggressive treatment plan, but one my doctor believed to be the most effective. I asked her, if she were in my position, would she go this route. She said she would, and I didn’t doubt her. I will always believe this surgery and treatment plan saved my life, but as is often the case with ovarian cancer—that wasn’t the end of my journey.
During the process of surgery and chemotherapy (I honestly don’t remember exactly when), I was advised to get genetic testing done as this information can be beneficial when deciding on future treatment options. Doctors found I had a genetic mutation called Lynch Syndrome. This mutation had likely played a role in my fallopian tube cancer and put me at a higher risk for other cancers, so I prepared for ongoing, regular scans and monitoring.
For nearly a year after the end of my chemotherapy, I had been doing well and feeling good. Then, in March of 2020—I was at home alone and had a seizure. I remember telling myself to stay conscious long enough to call 911. An MRI found a brain tumor along with several brain lesions. It was a metastasis of my original cancer. Brain surgery and radiation were to follow, along with more scans and monitoring. A late-stage ovarian cancer diagnosis, along with brain metastases did not make for a favorable prognosis. I was told I would probably have 9 months to a year to live, but I kept that prognosis to myself. After all, I had four dogs I wasn’t about to abandon. I was learning that, along with trying to take care of this disease, I needed to be aware of how the seemingly unending bad news was impacting those I cared about. I lost a few old friends during this time. But thankfully, I was able to hold on to a wonderful group of old and new friends who have continued to be there.
One of these wonderful people was a young woman from MOCA who reached out prior to my initial chemotherapy. She introduced herself and asked if she could visit me. She brought a blanket, handmade by a MOCA volunteer, and a MOCA Cares Kit (backpack full of goodies) to my first session. It meant so much that this person I never met would come to see me. It also served to remind me that I wasn’t alone. I have reached out to MOCA many times since those earlier days, and they have served as a great resource and wonderful source of support.
After brain surgery and with the help of my boyfriend who was able to keep track of things that I couldn’t (like medication schedules, driving to and from appointments and helping with dog care), things went along day by day. They got better. I became obsessed with stories of others who had outlived their cancer prognosis and what steps they had taken to do so. Those stories provided inspiration in so many ways. Primarily, I learned to use the skills I already had to fight this. Fortunately, one of those “skills” included being annoyingly stubborn, so I decided to be even more of that!
Today, my life includes numerous doctor appointments, CT and MRI scans, blood tests and annual monitoring for colon, breast, skin, bladder, and esophageal cancers. Because of this, I have a hard time planning a long-range future, but what I have gained is so much more important; I have learned not to take things for granted and that each day is truly a gift (cliched, I know, but so very true). I also gained a sense of comradery with other women fighting cancer. I have been inspired by the strength, grace, and ability to endure and thrive that the women I have met/read about embody.
For the past two-plus years, I have been on a maintenance drug and have been doing well.
People ask and I am hesitant to say I am cancer-free, but I am incredibly fortunate to be here, with my dogs, spending time with friends and working (from home) doing something I feel is important. I help to provide affordable housing. I am happy to be able to do this often-complex work particularly because at an occupational therapy session right after my brain surgery, I couldn’t make a dollar out of a pile of change placed in front of me—definite progress! I am also looking at fostering hospice. Maybe for obvious reasons, I feel drawn to these strong little creatures who can’t do it alone.
My experience with ovarian cancer has made me appreciate the resilience of the cancer community. It isn’t exactly a happy space to occupy for anyone, but so many of us are living longer with the help of researchers and medical professionals who are in this with us, and working to find a cure. Obviously, I can’t cure cancer, but I can share my story. And if doing that helps others the way survivor stories helped me—and if it encourages women to be adamant about their own health, then I gratefully join this strong and inspiring community.
The information enclosed in Survivor Stories should not be considered a substitute for the opinion of a qualified health care provider. MOCA does not recommend or guarantee any product mentioned. Please use this information to assist you in obtaining further information and in making your own health care decisions.
