Mary Evans, retired hospice R.N.

July 2021

My ovarian cancer journey has been a long one, nor is it over yet. When I went for my yearly gynecology checkup in late November 2002, I was told that I had Stage III ovarian cancer. I felt like a bolt of lightning had hit me. Within days I found myself being prepped for surgery by a gynecologic oncologist. How could this happen to me? Why didn’t I realize what was going on in my body? Even though I was a nurse, I had no idea of what symptoms were associated with ovarian cancer. My symptoms in hind-sight were urinary frequency, urgency and a slight poofing of my belly. In early December 2002 I started chemo: six months of carboplatin along with Taxol; six months of consolidated Taxol followed. During this time I added acupuncture to help alleviate the nausea that occurred. I also started to practice Soaring Crane Qui Gong. I already had been practicing Tai Chi and continued to do so. I looked into aromatherapy, and found a massage therapist who practices with essential oils. I also attended an ovarian cancer support group. It was there that I met Diane O’Connor. Because of her I became part of the Survivors Teaching Students group.

I had a recurrence in 2010. It was treated by surgery to remove an encapsulated tumor, followed by six months of carboplatin and Taxol. I had another recurrence in 2015 with major surgery in which my spleen, part of my stomach, and the tail of my pancreas were removed. Pathology showed clear margins. My oncologist presented my case to the Tumor Board. Their consensus was to watch me, and no further treatment was necessary. In addition by this time I had experienced a negative reaction to carboplatin; so I was unable to continue with that type of chemo. I was fortunate to be able to continue working part-time through all of this. After this last go-around with ovarian cancer, my husband and I decide to take early retirement. The odds were strong for having another recurrence. At this point we had five grandchildren: two in California, three in Ohio. We had lived in Portland, OR for almost 20 years after moving from Pennsylvania, where we both grew up. We made the decision to move to Ohio to be close to my youngest daughter and her family.

I had yet another recurrence in 2019. I began treatment with a gynecologic oncologist at the Cleveland Clinic. in Cleveland. I was started on Gemcitabine and Oxaliplatin. My dose of the Oxaliplatin was slowly titrated to prevent a reaction to it. Treatment was one day a week for three weeks with a week off. I discovered that the integrative therapies were not as available in Cleveland as they had been in Portland; so I could not continue them. My body eventually rebelled against the chemotherapy — I became protein deficient and needed two blood transfusions. My oncologist started me on Zejula, a PARP inhibitor (oral). This was NOT covered by my health insurance, and I didn’t qualify for any type of financial help. The medication became an out-of-pocket expense (I flipped in and out of the Donut Hole).

My CA125 at diagnosis was elevated. However, with each recurrence it remained in the normal range under 28. I had to fight to make my doctors understand that just because my CA 125 was in the normal range, it didn’t mean that there was no cancer present. As soon as my CA 125 began to rise, even though it remained in the normal range, I knew something was going on. My CA 125 was 17 while on Zejula; a CT scan showed a tumor on my pancreas. I was referred to a radiation oncologist who felt that he could irradiate this with focused radiation treatments. Again I had to fight the insurance company. The radiation oncologist had to submit all kinds of information in order for treatment to be approved. Needless to say, the waiting for all this was not easy. After the radiation treatments, CT scan showed no traces of the tumor, my CA125 was 7.

I try to live as normal a life as possible. COVID 19 was another hurdle as my last chemo treatments and the radiation treatments took place during the pandemic. My husband and I walk twice daily. I continue Tai Chi by Zoom. I’ve learned a lot over these many years. I still work on trying to keep my anxiety down along with the frustration I feel. I gather strength through nature, gardening, my love of music, maintaining contact with long-term friends, and most of all from the love of my husband and my family.

Again, I am on watch, and my journey continues.