Kathleen Fallon

March 2016

This is a story that has no ending. It is a story that has evolved over six years of battling ovarian cancer. I was diagnosed with ovarian cancer on New Year’s Eve 2009. For months I had been gaining weight and feeling tired. By the time I had a doctor’s appointment my stomach was distended and the doctor thought I had a bowel obstruction. She sent me straight to the hospital for a CT scan and I left the imaging department that New Year’s Eve with a diagnosis of stage IIIC ovarian cancer.

I cancelled my New Year’s Eve plans. I spent the evening sitting on a friend’s couch in shock, wrapped in a blanket of fear. Those first few weeks of being diagnosed with cancer were confusing and scary; time seemed to stop. I knew nothing about ovarian cancer. I had no family members or friends who had this type of cancer. I didn’t even know the difference between a gynecologic doctor and and a gynecologic oncologist. Fortunately, I did have a friend who was working as an oncology nurse. She connected me to a gynecologic oncologist at her clinic who was a wonderful person and a skilled surgeon. I had surgery on January 21, 2010: a complete hysterectomy, total omentectomy, debulking, and the placement of 2 ports for the inevitable chemotherapy.

Exhausted from the surgery and still in a state of shock, I had a hard time focusing. I found it impossible to manage all the decisions and the planning that it took to heal while simultaneously trying to make informed decisions about my disease. I relied on my partner and my friends to help me navigate the medical community as I healed from the surgery and got ready for treatment. At my oncologists suggestion, I joined a trial where I would get Taxol, Cisplatin and the trial drug, Avastin. Some of the chemo would be administered using an intraperatineal port—a port directly connected to my abdomen. My partner and I researched alternative care and we found a naturopath and acupuncturist who specialized in cancer support and helped me manage the side-effects of chemo. Because of them I was able to managed the treatment and recovery with few side effects.

I had 18 rounds of chemo, after which I was declared to be cancer free. But towards the end of my chemo treatments I started having headaches. My doctor was concerned that there was a rare chance that the ovarian cancer had metastasized to my brain, so he stopped the chemo and ordered a brain MRI. They found a suspicious growth so I went into surgery. Luckily, it turned out to be a non-malignant meningioma—a cyst near my brain. The ovarian cancer had not metastasized to my brain, but brain surgery on the heels of chemo treatment added more stress and concern to my general health status. All of us with cancer diagnoses know what a roller coaster ride it is—the ups and downs of not knowing—and how important it is to find hope and strength during that “ride.” Fortunately, I got through this surgery and scare with the support of friends, family and this amazing team of western and eastern providers.

I stayed in remission for 14 months until the ovarian cancer returned. It was at that time I made a very “non-traditional” treatment decision. I decided not to repeat the same chemo regiment that my oncologist suggested. I didn’t believe that repeating the same grueling treatment would do anything different than it had before. I needed to try a different approach. I asked members of my treatment team to meet with my partner and me on a Sunday afternoon to make a plan. My acupuncturist, naturopathic doctor, oncology nurse and a consulting oncologist met with us. It was amazing! This team wrestled with the next steps in treatment. They respected and listened to each other, had differences of opinions about what treatment was best for my situation, and came up with a plan that everyone could agree on. The willingness of this group to come together to support me and to use their different backgrounds to work together to create a plan was stunning. I believe that this model is essential for treating patients with complicated diagnoses, and I wish it was available for everyone. I had genetic testing done after this recurrence and learned I was BRCA 1. (I had been adopted so my genetic history was unknown.) Luckily for me, the consulting oncologist on our team was on top of the latest research and trials. I learned how important it is to test for the BRCA gene because BRCA patients have different treatment options. It was decided that I would find a parp-inhibitor trial specifically designed for BRCA 1 ovarian cancer patients.

I honestly have to say that because of how exhausted I was from chemo and surgeries, I would probably not have found a trial had it not been for the persistence of my partner. Through hours of research, phone calls, and emails she found a phase 2 trial in Boston (at the Dana Farber Cancer Institute) testing a parp-inhibitor called Olaparib. Getting into the trial was like applying for admission to Harvard. Besides a booklet of paperwork, referrals from my oncologist and insurance consents, my labs had to be at a certain level and the new tumors had to be a certain size. I had to be willing to travel once a month to Boston for checkups and lab work, and have a scan every 3 months. I couldn’t miss any appointments and I couldn’t have anything done in Portland! The flight and housing costs were my responsibility. The expense for the medical appointments, labs and scans were covered by the trial.

We flew to Boston, and after waiting 3 weeks for my neutrophils to reach the right level, I finally got into the trial! It consisted of taking 16 Olaparib capsules daily and keeping a medicine journal. Within a few months I had gone into remission—the tumors had shrunk 99%. I continued on the trial, taking Olaparib daily and traveling monthly to Boston for the next year. While Olaparib can have side effects, I didn’t suffer from any of them. I sometimes felt tired but nothing like what I had experienced during chemo. It lowered my neutrophil counts and my white counts were watched carefully. Olaparib can cause blood cancers. After a year of traveling to Boston, a branch of the trial opened in Los Angeles and I transferred there as it was closer and easier to manage. It was a life changing move because I got connected with another dream team there: a wonderful oncology nurse and an amazing oncologist—someone who was not only well versed in research, but who spoke my language—accessible, alternative and brilliant. The life style of traveling for treatment was complicated. I could only do this because I had the luxury of retiring from work when I was diagnosed, I had the support of my partner who travelled with me every single time, and I believed that this trial drug would get me back into remission.

I was on this trial for two years until another recurrence in 2014. I now had a tiny tumor between my pancreas and liver. I had to stop Olaparib and was taken off the trial. Talk about confusion and fear! Fighting ovarian cancer is a physical and emotional endurance test. It’s like running a marathon that you never signed up for or trained to do!

Directed by my LA medical team, I decided to have surgery to remove the tumor. It was tiny and in an area that was operable. The surgery was successful. My oncologist had the tumor sent for genetic testing so we’d have an idea about what treatment methods were best for my ovarian cancer. We decided that I’d take Tamoxifen and get scans and labs every three months in LA. I love and trust my medical team at Cedar Sinai and have stayed with them.

I’ve currently been in remission for fourteen months. I’m continually thankful for the people who have dedicated their time and energy into research to fight this disease. I know I’ve been blessed in having a team of providers who communicate with each other and are informed by each other’s work in the field. It’s my wish that there be more cross-discipline teams of health care providers that work together to provide treatment options for people with cancer.

The hardest part of fighting this disease has been to not let it define my life. With the help of friends, medical staff and family I’ve found the courage, endurance and hope to continue to build and live my best life regardless of this chronic disease.

Editor’s Note: Kathleen lives on 15 acres south of Portland (in Canby) with her partner, Ellen, of 28 years, and their golden retriever. She is a singer/songwriter who has performed and recorded for many years with the group Motherlode. Kathleen enjoys making ceramics, traveling and gardening.