At age 60, I was at the top of my nursing career as head of orthopedics in the operating room at a hospital in Bucks County, Pennsylvania. I was healthy, with no significant medical background, and often planned my next hiking and camping trip with my husband, John. We have two adult children, a son and a daughter, life was good.
My journey with ovarian cancer began when I started to notice a nagging pulling pain on my right side, which oddly seemed to worsen when I laughed. I also had wandering abdominal discomfort, some constipation, but no real pain. I went to my family doctor, visited my gynecologist, my gastrointestinal doctor, and even consulted a nutritionist along with my own “hallway consults.” If someone was walking by at work that I thought could help determine the problem, I asked! I also had three CT scans, lab work, chest and abdominal x-rays. If there was a test, I most likely had it to determine the source of my discomfort. This also included being worked up for celiac disease, gall bladder disease, Lyme disease, diverticulitis, and a pulmonary embolism. I tried to incorporate even healthier habits to see if that would make a difference. I exercised more, took yoga classes, attempted a gluten-free and dairy-free diet, tried probiotics, I even tried fasting. After six months with no improvement, my GI doctor suggested another CT and thought ‘maybe it could be chronic appendicitis.’ After working all day, I had my scan, went home, and received a call at 9:30 pm that night. I still remember the time of that initial phone call. “Well, it’s not appendicitis he said. That’s good, I said. Well, no, he said. Call your gynecologist tomorrow. You need to see him.” Ok. I wasn’t worried because I knew it wasn’t cancer -or so I thought. I already had the negative ultrasound and two previous CT scans, both of which did not see anything cancerous.
The next day, which was November 13, 2013, I got up, went to work at 6 am, found an empty OR room, and logged onto the computer. No HIPPA violation here. It was my own record. Nurses, as they say, are sometimes the ‘worst patient’ – and this patient wasn’t waiting to find out what was found on the latest CT scan. I read the following “large volume of peritoneal tissue characteristic of extensive peritoneal carcinoma” and “obscured organs”….and my very favorite….”shaggy rind of neoplasm.”
I thought I would be dead within the year. All I remembered about ovarian cancer was, “don’t get that one. It’s the bad one, poor prognosis, one of the worst.” A fellow nurse and good friend found me, and I called my gynecologist, who came and read the report. I felt paralyzed. Appointments were set up for me the very next day and the day after to see a gynecological oncologist. Seven days later, I was on the other side of the knife in the OR for surgery. Post-op, I had an allergic reaction to the linens, and I couldn’t recognize my own legs. They were so swollen they looked like elephant legs. I was sent home with a Foley catheter and had to self-inject anticoagulants. When I went for my first chemotherapy treatment, I thought I was going in to meet the nurses, get a tour, and then actually make an appointment to start. I panicked when I was told, “it was starting now.” I needed time to process, so I thought, and the nurses calmed me, asked what I needed, and got me a bottle of water, some magazines, and a much-needed dose of Ativan. I survived! But as we know, the journey with ovarian cancer can be long and not so “cut and dry.” I developed a small bowel obstruction, which required an NG tube placed in my nose. I think the NG tube was the worst.
Each year I have been part of the NOCC Delaware Valley Chapter and speak to medical students about my journey. I tell them to make sure they know that placing an NG tube is not as easy as we medical professionals think about the patient! I also say that I found it comforting when the doctors said, “if this were my loved one, I would do this…” and that ovarian cancer does not mean a death sentence. To me, it is a chronic disease.
I have had three recurrences since my first treatments. The first recurrence hit me almost harder than my initial diagnosis because I realized this is truly a chronic disease. On March 2, 2021, I had my second infusion for what is now my 3rd recurrence. I have dealt with losing my hair (just dyed it purple before losing it once again!), fighting fatigue, and being pumped full of poisonous chemicals. But my focus is always on the quality of life, and I enjoyed two years in my most recent remission! Since that ominous day almost 8 years ago, I have seen my daughter married, welcomed 4 grandchildren into my world, and celebrated many family events. My husband and I have traveled, biked, gardened, and kayaked in many beautiful places. We got a little teardrop camper during the pandemic, planning lots of trips, hopefully to Maine and the Maritimes this fall.
My faith, my family, and my friends sustain me on my journey. My husband, my children, and my sweet grandchildren bring me joy every day. I support the NOCC for my daughter, my two sisters, my ten nieces, many cousins, and all my teal sisters!
Mary lives with her husband John of 43 years in Bucks County, PA. They have walked every street in Doylestown, PA, to continue to enjoy the outdoors during the pandemic. Her grandchildren love her purple hair!