Advocate Spotlight: Ellen

AdvancedOvarianCancer.net shares the stories and experiences of people living with ovarian cancer. We are highlighting the story of our advocate Ellen who was diagnosed with advanced ovarian cancer in 2018. Following her diagnosis, Ellen has been dedicated to sharing her story with honesty and openness to remind others they are never alone.

This is Ellen’s story...

From misdiagnosis to ovarian cancer

I was diagnosed initially by several doctors indicating I had an Abdominal Hernia. I was scheduled for surgery in September 2018 to find a different. In fact, it was discovered that my left ovary, along with a tumor, connected to my left fallopian tubes. The tumor was wrapped in the abdominal lining and traveled near the umbilical cord.

A treatment plan was reached by multiple physicians attending an interdisciplinary Cancer Committee meeting. The pathologists confirmed a high-grade serous carcinoma stage III C. They reviewed photos from the visual field and tissue slides from surgery. Unfortunately, my biomarker CA125 remains challenging to assist further as they started relatively low and now are high even after treatment. Therefore, PET scans became the only reliable source of disease progress, the gold standard in determining the status of my cancer progress.

Treatment experiences and challenges

Treatments included multiple tests, including an intravaginal ultrasound, CT scans, PET scans, blood testing, genetic testing, visits to two surgeons, and ultimately a medical and surgical oncologist.

I had all my care close to home at Pardee/UNC Hospital Cancer Care Center. The main hospital was four hours away in Chapel Hill, NC. Facing multiple visits with long hours of infusions, it made sense to carry on with my plan. I was particularly concerned about traveling and the hardship this could create for me and my caregiver. At one point, I sought a second opinion from a senior oncologist in Chapel Hill. Luckily my Oncologist and the senior specialist agreed on a drug regimen.

Treatment planning

• Taxol/carboplatin/Avastin x 6 (Avastin held for cycles 1 and 2) 10/25/2018 - 2/21/2019.
• "Maintenance" Avastin 3/14/2019-2/13/2020, complicated by accentuated hypertension.
•  Gemcitabine/carboplatin/Avastin began 11/4/2020 and ended 1/13/2021, with a response
• Maintenance of Avastin resumed on 1/27/2021 until the Avastin created accelerated hypertension.
• During an office visit on 11/24/21, it was decided that I would go on a holiday for all chemotherapy and maintenance efforts. It was found that there was an increase in UPC indicating a rise in urine protein creatinine and a new concern for organ failure. After this, I would return to a full chemo regimen.

Reprieve

My reprieve lasted until May 2022. Very grateful to have a respite from all chemo agents, However, on May 24, 2022, I resumed chemotherapy infusions. This time the plan is to infuse Taxol, Cisplatin, and Avastin each week for three out of the four weeks each month. A lower dose each week will hopefully manage the growth of cancer while not causing other organ effects. It is currently June 2022 and I could not complete chemo as planned. This week I started back on the same 3 chemo agents, but every other week along with pre-planned support with IV Saline and several antiemetic drugs.

Opting to be open and honest about my decisions

From the start of my diagnosis, I made it clear that openness and honesty about findings and choices in treatment were extremely important to me. I was an educated consumer, but could hardly estimate my own personal response to chemotherapy. I definitely feel that I am included in treatment choices including an ability to alert physicians to symptoms that may impact holding chemotherapy infusions when I am unable to recover.

Cancer is an illness that happens to you and your entire family and friends who love you. I became keenly aware of the changes my husband was experiencing as I could watch him become distant or angry out of the frustration of the unknown of this experience. As a result, I sought out a therapist from Hospice as I believed she would be best informed about the reactions which occur along the way. My unsaid message was to build a relationship with our local hospice to support their full involvement should I need it later in my journey.

Focus on finding acceptance

From everything I learned and all that I experienced; I encourage others to quickly reach a point where they are willing to face the reality of this disease known as cancer. Each day I hope and pray for good days and maybe good months which would allow us to plan for joyful experiences. While decreased energy and mobility impact the nature and extent of activity, I would like to continue creating lasting memories.

Living in a state of denial only delays proper treatment. This delay can mean the difference between succumbing to this illness or living a full life, albeit shortened to a degree I never imagined.

Accepting reality and being willing to face the pain of loss serve as a tremendous model to those around us. My sons and daughters-in-law, siblings, and close friends have been given permission to mourn anticipatory grief. In so doing they express the meaning my life has been for them. I am also able to verbalize the joy, they bring to me.

Although my grandchildren are only 7 and 4, I have found them to understand a little more each time we are together. I am careful not to burden them with things they may not need to know, but fully recognize that all behavior around them has meaning. While painful, we are grieving together and living together as there is a new respect for how precious time can be.

Using my voice to spread awareness and support

Through this experience, I learned that not every cancer is alike. In particular, ovarian cancer often remains quiet in a women’s body. This causes a delay in discovery, for many of us so late that it impacts the process of treatment and prognosis.

I do see myself as an advocate, especially in my role with AdvancedOvarianCancer.net. As in my book, "Someone to Watch Over You: Finding Your Strength Within," I see myself as a Paraclete, someone who serves as a loving presence, a helper, a counselor, and a comforter.

Throughout my life, I felt a calling to serve as an Advanced Practice Nurse, a Grief and Loss Therapist, an Educator, and one who offers oversight to the Standards of Interdisciplinary care to people in need of healthcare. I see it as a privilege to walk beside others through this season of their life.

Something most don't know about me

I fully admit that I started this life feeling loved and supported by my family, but somewhat afraid of the outside world. I was shy and careful not to promote myself. I am aware that I had unnecessary fears that may not have been my fears at all.

I had to fight this internal conflict to serve others. I learned to believe in myself and translated this effort, not for my success but to be a mirror of love and support to others. I now believe I matter and am so happy to lead others to this place.

Editor’s Note: We are extremely saddened to say that on August 9, 2024, Ellen Reed passed away. Ellen’s advocacy efforts and writing continue to reach many. She will be deeply missed.