MY PERSONAL STORY

My name is Donna Wiegle and I have been living with advanced stage ovarian cancer, stage IIIB, since my diagnosis in April 2016. It took more than two years for me to be diagnosed with ovarian cancer. I first presented in the emergency room in September of 2013 in extreme distress. I had severe abdominal pain, a belly full of ascites fluid, and an elevated CA-125, the ovarian cancer tumor marker. My pain level improved and I was released from the hospital the same day with instructions to return a few days later to have some of the ascites fluid removed. When I returned for that procedure, all the fluid was gone, apparently reabsorbed by my own body. My CA-125 had returned to normal, and I felt better. At that time it was suggested that perhaps I had a cyst on one of my ovaries that had ruptured. It seemed like a reasonable explanation and life continued on as normal for a while until I began having episodes of severe abdominal pain followed by horrendous vomiting. More tests followed, but no answers came. These awful episodes continued, occurring every couple of months. Still no answers...just more tests and more medical appointments.

In April of 2016, I had another one of my episodes, but this time the abdominal pain did not resolve after the vomiting. I ended up in the emergency room and was diagnosed with a small bowel obstruction. Conservative measures were tried, IV fluids and a tube down my nose into my stomach, but after a few days with no improvement in my condition, I was taken to the operating room for surgery. I remember the surgeon telling me afterwards that he found a few small nodules on the outside of my small intestine, but didn’t think they would turn out to be anything serious. He said he sent them away for testing to be sure. About a week later, he called me at home to tell me that I had ovarian cancer, stage III B, advanced stage, metastatic cancer. My heart sunk and my mind raced. Not again.

I had been diagnosed with cervical cancer in 1990. At that time I had a partial hysterectomy…they left my ovaries since I was only 30 at the time. Hindsight is 20/20 and they should have just taken them, but they didn’t. So, here I was, once again, facing a cancer diagnosis, but this time it seemed as if it was not going to end well.

I had a type of ovarian cancer, low grade serous, that did not respond well to chemotherapy. It was considered chemo-resistant with only 5-10% of patients with low grade serous having a positive response to chemo. I also was not a candidate to have surgery to remove my ovaries due to all of the damage from pelvic radiation, a treatment I had after my cervical cancer. I went to Boston, from Maine, to see the experts at Dana Farber Cancer Institute and Brigham and Women’s Hospital. They agreed…no surgery due to the complications I presented with—the damage from the pelvic radiation. Oh, and they agreed, that my type of cancer, low grade serous, did not respond well to chemo. I asked for an honest, honest prognosis, stressing the word honest. I was told 5 years!

My treatment was a complete shit-show! On week number two of chemo, I opted to have a port put in so I didn’t have to be stuck over and over again to find my veins. I ended up with a pneumothorax, a punctured lung. I spent 11 days in the hospital with two huge chest tubes, the size of a garden hoses, sticking out the side wall of my chest. It was awful, but eventually I got out and resumed my chemo. My blood counts plummeted and I was deferred for treatment one week due to a low platelet count. Then my red blood cell count plummeted and I was having trouble breathing. Several shots of Aranesp, a very expensive drug that helps red cell production, was administered. Treatment was delayed waiting for my blood count to come up. By treatment number 10 of my weekly chemo treatments, I could barely walk due to severe neuropathy in both feet. This was a side effect of one of the drugs I was receiving, the Taxol. My oncologist said it could get worse and could be permanent. He gave me the week off to see if my neuropathy lessened. It did not! I could barely walk to the bathroom. So, in a BOLD move, I quit frontline chemo! I was not willing to risk the use of my feet for a treatment that only 5-10% of patients responded to. Those odds were not good enough for me.

I’ve been on an Aromatase Inhibitor drug, a hormone blocker called Letrozole since quitting chemo, three years ago. My cancer is estrogen receptive like a lot of breast cancers. The Letrozole eliminates the estrogen from your body, making it unavailable to the cancer—kind of like cutting off its food source. It has worked for me. It doesn’t work well for all women, but for me it has worked well.

In early June 2019, I had a biopsy of a suspicious area in my right chest. It came back as ovarian cancer, but this time as high grade serous, not low grade. This is a game changer for me. High grade is much more aggressive with a poorer prognosis. After meeting with a radiation oncologist to explore radiation as a treatment, and a thoracic oncology surgeon to explore surgery, I decided to have surgery to remove the tumor. I had a successful surgery just two weeks after returning from my TEAL on WHEELS trip. The tumor was removed with clear margins, meaning no cancer cells left behind. I am now considered to be a stage IV ovarian cancer patient due to the distant spread of the ovarian cancer outside of the pelvic/abdominal area.

I am approaching the four-year mark of the 5-year prognosis I was originally given at Dana Farber Cancer Institute in Boston. I’ve been in and out of the hospital many times during the last four years, but I believe I will exceed that 5-year time frame. I am strong and determined to continue living a purposeful life. I often say I don’t care how long I live, only how well I live. Quality of life is the most important thing to me and I believe my quality continues to be quite good.