Elaine Dickson, with Daughter Laura Bernards

October 2014

Readers of “In Her Own Words” understand that every woman’s experience with ovarian cancer is different from the others. I’m saddened that many women I’ve met in the Good Samaritan Hospital gynecological cancer support group weren’t diagnosed until stage 3 or 4 and that to survive they had to accept invasive treatments with harsh side effects. I’ve attended too many memorial services. To me, quality of life has become very important.

My husband and I retired to Oregon in 1996. In 2001 he was diagnosed with Parkinson’s, a progressively degenerative disease that meant retrofitting our home for safety and finding appropriate durable medical equipment. We chose to remain in our own home and I learned how to be a caregiver.

In July 2006, my internist felt something unusual during my routine pelvic exam and ordered scans which I delayed so our family could attend a Chicago wedding. An unusually tough migraine coupled with dehydration sent me to the ER instead of PDX. The migraine persevered; I was admitted to the hospital; the pre-ordered scans were done; I was seen by two gynecological specialists before being released. When the results of the CA-125 blood test indicated high numbers, my new gynecologic oncologist ordered a transvaginal ultrasound and scheduled surgery (to occur within days).

I remember the pre-operative protocol but nothing else for two days. Surgery that was already in progress was suspended when I went into anaphylactic shock. I’m told that pre-surgery intubation kept me alive while the incision in my abdomen was closed before I was sent straight to the ICU. No biopsies were taken from the large tumors as my gyn/onc didn’t want to release any cancer cells.

Six weeks of research and tests with the chief allergist revealed that I had had a severe latex allergy during surgery. A second surgery was scheduled. Diagnosis: primary peritoneal cancer, stage III-C. Chemotherapy required an implanted peritoneal port and I was put on a six-round schedule of paclitaxol and cisplatin. My CA-125 numbers were dramatically reduced, but I needed five different anti-emetics for nausea control, and many neupogen injections to boost white cell counts. I was totally exhausted.

I was in remission for 22 months before my CA-125 counts rose again. This time the gyn/onc ordered a CT-scan, a PET-scan, and an MRI all the same week and scheduled surgery the next week. I requested an implanted power port to make vein access tolerable and still have this port. Six rounds of carboplatin and Gemzar were infused.

October 2014 marks the 8th year since my diagnosis and I’ve been progression-free about 5 years. I schedule gyn/onc visits twice a year and know that for me, the CA-125 counts are an important marker. But what about my husband, his disease, and my caregiving role? And what do I mean by quality of life?

Our three daughters have always been totally involved in emotional encouragement and hands-on practical support even though my diagnosis has complicated their own personal, work, and family lives. An “Elaine’s Helper” project was designed to let friends sign up for chemo appointment driving, grocery shopping, and weekend meal delivery. This plan worked well enough to be reinstated during my recurrence. We found a housekeeper, yard care manager, handyman, attorney, and counselor. We ordered home-delivered meals from the local senior center.

A companion wheelchair was stored in our car, allowing us access to appointments and field trips. As my husband’s Parkinson’s Disease (PD) progressed, we found in-home caregivers to give me respite time. Support groups became very important—cancer survivors, PD and Alzheimer’s caregivers. My husband was able to remain at home; he died last February with our family at his bedside.

When personal energy allowed it, I served on advisory boards, joined study groups, and was involved in my church. This gave some balance to my caregiving life. Our daughters’ families’ support has been a constant treasure; my strong faith gives comfort; and knowing that I have understanding friends is very important. Interacting with four very young grandchildren as they grow has been amazing.

Widowhood has been hard, but I’m finding others who share that path. With more time now available, I volunteer with home-delivered meal production and sing with a 90-voice choir. These interests are my quality of life. Knowing that cancer may still be on my horizon, I try to make a difference each day. A positive outlook really helps—I recommend it!

Laura Dickson Bernards is on the Board of Directors of the Ovarian Cancer Alliance of Oregon and SW Washington. She joined the board three years ago, and has the perspective of a daughter of a woman diagnosed with ovarian cancer. Laura writes:

Cancer affects all of us. During my mom’s surgeries and chemo, I was the local daughter/medical advocate and spent a lot of time bedside learning the terminology and communicating with doctors and nurses to advocate for my mom’s care.

It was maddening to watch the drip, drip, drip of chemo and also hard to watch the suffering and bad side effects that followed. Watching someone you love suffer is tough, so difficult that I sought out cancer counseling after my mom’s first surgery when she almost died. It was helpful for me to process the “loss of innocence;” the understanding that your parents won’t live forever; and the idea of the “new normal.”

My mom is an amazing survivor, and we were also very lucky. I too have seen too many women die of this disease, and it’s heart breaking for my mom to lose another sister from support group every time someone passes away. Our new normal means that we never take Mom’s time with her grandkids (that we never thought we’d have) for granted. And that we try not to miss an opportunity to do something fun or attend our new annual mom/daughter traditions like attending the county fair and going to farm dinners every summer.

I had the honor of attending the Ovarian Cancer National Alliance’s national conference and Lobby Day twice, one time with my sister. It was an inspiring, empowering event, and I will never forget when a local survivor said to me “Laurie, I now understand why you’re here, we need you to keep advocating for us when we can’t anymore.” That survivor has since passed away.

I thought I was tired that day in the 100 degree Washington D.C. summer heat, but she and others kept marching on to the next Capitol Hill meeting. They were there to do their part to change things for the better. As daughters, sisters, aunts, nieces, and cousins of ovarian cancer, it is so important that we step up to advocate for those we’ve lost or those too sick to do so for themselves.

There are many exciting research channels happening right now that could potentially change the course of this disease. But they all need funding and support. In order for this disease to make more breakthroughs in research, we cannot be silent. I strongly urge others to become more involved in OCAOSW or attend the national conference and lobby day. For our generation and our daughters’ generation, I hope we can change the statistics for the better.