For much of my life, I had worried about getting ovarian cancer. There was no known gene mutation in my family, but I had a number of ovarian cysts in my twenties and then needed a hysterectomy at 44 for fibroid tumors. My husband had lost his mom to ovarian cancer in 1980, and for whatever reason, I was always worried about it being my fate as well. So when I had my hysterectomy, I asked my gynecologist to take out my ovaries and fallopian tubes because of my fears. He indicated I would need them to help me get through menopause.
Fast forward to June of 2019. I was 54 years old. I was in Colorado with a big group of my teacher friends to celebrate the end of the school year. While there, I began noticing that I was feeling a lot of pressure when I would urinate, and it often felt difficult to hold it when I had to go. I thought that odd and decided to go to my gynecologist when I returned home. My gynecologist chalked it up to menopause and having had three babies. When I reminded him of my fear of ovarian cancer, he agreed to do a transvaginal ultrasound; I think more than anything to set my mind at ease. He also ordered routine blood work. He did not for a second suspect ovarian cancer. As I walked out of the office, he said, “You would be noticing weight gain and a swollen belly.” When my ultrasound results came back, it noted a benign cyst on my right ovary. Phew. I could rest easy that it wasn’t ovarian cancer. My bloodwork looked good, too.
As the summer went on, however, I started to feel a lot of pain in my ribcage and began to suffer from bouts of diarrhea and then constipation. I felt a lot of pressure in my rectum. I decided to see my internist. I shared that I was feeling a lot of pain in my ribcage, almost as if I had worked out really hard…but I hadn’t. I also shared the new symptom of rectal pain and bouts of diarrhea and constipation. I was leaving to go on a trip to Europe with my husband and grown kids and just felt concerned that something was up. He didn’t seem concerned and told me to take ibuprofen for my rib pain. He also suggested I might have IBS, but that didn’t seem likely since I was 54 at the time and had never struggled with GI issues. Off to Europe.
While on vacation with my family, my GI issues increased, and one day, when we rented bikes, I told my husband that my legs felt heavy and tired. I had difficulty keeping up with my family. I was growing really concerned and so perplexed. When I returned to the states, I saw my internist, who still wasn’t concerned but ordered a CT scan for the next day to take a look. He was heading out on a long vacation, and he said his colleague would be covering and would call with results. And that is when my life as I knew it came to a crashing halt. August 7th, 2019, I got the call. The radiologist noted omental caking and a small cancerous tumor on my right ovary. The internist filling in for my physician asked me to come over to the clinic so they could do a CA125 blood test. It was 960. At this point, my gynecologist, who was beyond shocked, was thinking it was primary peritoneal cancer since there really were no tumors felt during a pelvic exam and only a small tumor on my ovary.
My sister, who is my biggest cheerleader, began researching gynecological oncologists in our area. I was debulked on September 4th, 2019. It was three months from the beginning of my symptoms to my surgery. My omentum was loaded with tumors and removed, including my ovaries, fallopian tubes, and appendix. My organs and diaphragm were covered with implants, but there was no cancer found in my organs. I did have a 9 cm tumor pressing on my sigmoid colon, explaining all the GI issues. I ended up with a temporary ileostomy because they had to resect my colon, and the surgeon wanted to give it time to heal. I developed an ileus in the hospital and wound up with an Ng tube. I was pretty miserable. Those are hard days to revisit. My final diagnosis was stage 3C serous high-grade ovarian cancer.
I did 18 weekly taxol and carbo infusions from October 2019 to the end of January 2020. My CA125 was 9, and a CT indicated some areas to watch, but nothing of major concern. I learned I was BRCA negative through genetic testing, and my husband’s profile also revealed no familial gene mutations. I was relieved not to have to worry about my kids. Next up: Covid 19. Ugh. I had just spent months in my house quarantining because I was immunocompromised. I was so ready to get back out in the world, but it wasn’t meant to be. My husband, daughter, and I spent a lot of time here at the house reading, watching Netflix, taking up painting, knitting, and walking the dogs.
While it wasn’t ideal, I will always cherish the memories of the fun we would drum up while staying safer at home. My CA125 had fallen to 6.7 following treatment, and I was scheduled to have an ileostomy reversal in June. Following the reversal, I took a break from getting my CA125 checked because my oncologist said it would probably go up due to inflammation from the surgery. When I did finally get it checked, it was at 12. Hmm….maybe just inflammation still. A few weeks later, it was 23…then 95. I was in recurrence. Today I finished up my final chemo regimen of carbo and doxcil and will continue to receive Avastin for at least six months. I had recurred seven months out of frontline treatment, and this time, I am praying for a long remission. I am vaccinated and ready to recover from this final chemo and then get out there and travel while I can.
Ovarian cancer has taught me to slow down and find joy in the simplest of things. Before cancer, I always rushed around with a list of things to do for work and home a mile long. That is no longer a standard operating procedure for me. I now say no more often to commitments that feel overwhelming or that don’t align with what matters most to me. Instead, I make spending time with my husband and kids a priority. I want to make as many memories as possible with them. I love to sit in my “she shed” and read and listen to the birds. I now understand how fragile life is, and I am grateful for every day I am given.
I am not sure why I worried about getting ovarian cancer…that is a mystery to me. Somewhere in my soul, did I know it was my fate? Or, might my worry about it actually have played a role in causing it? I can’t say. What I can say is that if you are newly diagnosed, it is possible to have a quality life again on the other side of diagnosis and treatment. I was devastated by the phone call I received on that August afternoon, and my mind prepared for the worst, but I have to say, I have had some of the most joyful moments of my life in the midst of my journey. Hang in there! I highly recommend connecting with your local ovarian cancer community to get connected with a mentor. It is so helpful to have someone to talk to who has been there and truly understands. I have a wonderful mentor named Michelle.
Jenni and her husband are parents to three grown kids and one amazing daughter-in-law who bring them so much joy and laughter. They are also parents to two golden retrievers, Archie and Oakley, who are amazing therapy dogs. Jenni continues to work part-time as a Reading Specialist. She plans to volunteer at her cancer center as soon as volunteers can return!