Living with Ovarian Cancer

Each year, about 20,000 women in the United States will be diagnosed with ovarian cancer.   Today Jill shares her ovarian cancer story and explains why access to affordable, meaningful health insurance is critical for people living with cancer.

My name is Jill and I am a bad-ass 4-year survivor of stage 4 serous epithelial ovarian cancer with 41 chemo sessions under my belt!  

Diagnosis and Early Treatment

In 2015 at age 54 I went to my regular gynecologic visit, and an abnormal pap smear eventually lead to a diagnosis of high-grade serous ovarian cancer.  I was told that this cancer was serious and aggressive.

After numerous procedures and tests, including two major surgeries, I learned that my cancer had spread to my liver and spleen.

Self-Advocacy

One of my early providers told me that “we might not be talking about a cure.”

While I understand that there is no cure for my condition, I also knew that this was not the right doctor for me. She seemed daunted and discouraged by treating me.  My situation was clearly outside of her comfort zone. I decided to seek different care. I didn’t want to work with a doctor who was afraid of my condition.

I took control of my care and found myself new providers and a clinical trial to participate in. I now have great confidence in and respect for my care team and the treatment I receive.

Disease Progression and Treatment

I’ve received various chemotherapy treatments since 2015.  From the effects of the drugs — fatigue, chemo brain — to the pain from ports, to developing a deep vein thrombosis (blood clot), chemo has been a taxing experience.

I look forward to the time when chemotherapy is looked upon the way we view leeches in medical care today.  I feel confident that there are better methods of treating cancer than sickening the host and I look forward to participating in the research to move us in that direction!

A low point for me was when tumor growth caused a bowel obstruction that left me hospitalized and with a nasogastric tube for a week, one of the most difficult and painful experiences of my ovarian cancer journey to date.

Access to Health Insurance

I have had no option but to work throughout my diagnosis and treatment in order to ensure ongoing access to health insurance.  I could choose to go on SSDI and purchase insurance on the exchange, but doing so will greatly diminish my standard of living and I would likely lose my house.

I’m not sure how long my employer will continue accommodating my dramatically reduced capacity. So I take each day as it comes at me. If I had guaranteed health insurance, it would be such an amazing relief and a big weight off my shoulders. As it is, I must balance my ability to earn a living with my medical needs and this is very difficult.

I appreciate the many ovarian and other cancer patients who have gone before me and helped treatment improve with side-effect reducing medications.  I am excited that there are potential new treatments. And I hope to see more options for affordable, non-employer sponsored health insurance. Fewer worries about access to coverage would make a big difference to people living with cancer.

If you are interested in the specifics of the course of Jill’s battle with ovarian cancer, see a long-form version of her story and her treatment here.

Chronic Care Collaborative Members the Colorado Ovarian Cancer Alliance and the American Cancer Society offer resources for people living with ovarian cancer and their families.

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