Find Your Voice and Believe in Yourself

Long ago, before we had laptops, Health Union, and the Social Health Network crew to turn to, I learned the importance of being well-informed and advocating for others.

As a nursing student at NYU, I "lived" long hours in the lower library of the medical school. There, I read volumes of research to find the answer for my father. Albeit 5 years had passed, I knew his lung cancer had metastasized to his spine. However, I had difficulty convincing his doctor in Florida.

Although the pain consumed him, my father was told it was arthritis and "to live with it." In truth, the treatment for arthritis was almost as poor as cancer care. There was no palliative care or hospice teams to help evaluate treatment possibilities.

Fighting a good fight

After spending many nickels on the copy machine - these were the days that everything was manually reproduced and sent by mail, I found the perfect article.

It clearly stated that upon x-ray, metastases of the spine mimicked arthritis. But, unfortunately, the report arrived in Florida too late. Just days before, my father developed other symptoms indicating cancer had spread to his brain.

I was full of anger and frustration at not being heard. Not for me, but for my father, who lived in unnecessary pain for months. At the time, I lacked the years of experience to be credible. Why did I expect a much-revered physician might consider what a 19-year-old student might have to say?

This was my lesson

Find your voice and believe in yourself.

A phone call of apology from the doctor arrived as I watched my father quickly deteriorate. The only grace was he lived only 4 months after discovering his frontal lobe lesion.

But unfortunately, his personality was lost forever. To this day, I pray that his doctor learned something important from this experience. I know I did. As a result, I have never stopped advocating and encouraging others to be heard.

Life repeats itself: Learn the lessons and act on them

Life does repeat itself. About 2 weeks ago, I faced another monumental decision. Cancer in and around my colon was intruding on function.

Again, I reported findings for 2 months, tried every measure known to man, and diligently followed suggestions. But, more importantly, my oncologist finally agreed and rushed me to the emergency department. Together we faced what was out of our control.

I have to admit I still find it challenging to advocate for myself. However, I am reminded of the delay in my doctors exploring the signs and symptoms of ovarian cancer. I know I need to ask doctors to consider all possibilities and be ready to take action when necessary.

This is still not so easy. I waited a day in the hospital, asking my doctors to communicate with each other. I ultimately allowed the surgeon to do what surgeons do best. My colon was rerouted, and now I own a permanent colostomy.

The outcome

Likely, I will always wonder if this was the best action. Regardless, it is a done deal. However, it is worth raising this question. I need to know for myself and others that may ask. I have accommodated over again many times since learning about ovarian cancer, but I never imagined I would spend the rest of my life having to learn this new way of living.

Today I send many blessings to my teal warriors, their caregivers, and treatment team members. For me, I ask for strength and courage to live in faith. I also thank my husband for loving me when I find it especially hard.

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.