Hello Darkness

Without a doubt, when first diagnosed with Ovarian Cancer Stage III C in 2018, there was no question but to proceed through every recommended treatment. After all, being a fighter and risk-taker, the fight was indeed on. It started with two surgeries, the last being a major debulking of all reproductive organs and much abdominal tissue and fat leaving a nineteen-inch suture line.

The plan

My medical oncologist encouraged a monthly Taxol, Cisplatin, and Avastin regimen for six months. As a nurse caring for cancer patients in my early days, I knew it would be no walk in the park. Nevertheless, life was a solid motivating factor. I believed chemo would give me the chance to go on, to be with my husband and children, and perhaps experience more days or even years of life. Being healthy before all this and serving others as a healthcare professional, I felt confident. Either way, joining a world in the sick role didn't fit.

The chemo experience

Chemotherapy was devastating. Renal failure caused a shift to an inpatient stay. I lost all interest in eating and taking fluids by mouth. Unable to balance adequate input against all the losses in body fluids, my body was failing me. For the first time in my life, the experience presented a departure from the reality around me. I didn't recognize myself when I looked in the mirror. I lost track of the day and could only focus inward. Today I refer to this as my "dark place," a place where I was barely alive.

Holding on by threads

Through all this, something inside me told me to believe by reinterpreting all this suffering as healing. I am convinced that something within us gets us through even the worst conditions. Viktor Frankl, a psychiatrist and victim of the holocaust managed to survive through his internal will. Although tortured and left with the prospect of death in a gas chamber, Dr. Frankl advocates that,

“Everything can be taken from a man but one thing: the last of human freedoms – to choose one’s attitude in any given set of circumstances, to choose one’s own way.”

This powerful message supports me in everything I do. It led me to the end of that grueling first experience with chemo and then on as it was hardly over. With PET scans every 3-6 months becoming the gold standard of successful treatment, a poor PET scan reading caused enough concern to restart chemo. This time the order consisted of Gemcitabine instead of Cisplatin.

Always striving to live, I sustained this experience with none of the disastrous effects and went on into maintenance and immunotherapy with Avastin. This treatment choice allowed some semblance of life as Avastin was a simple infusion with a few hours of downtime once a month. It made us all hopeful again.

Then, the other shoe dropped

Cancer changes life in unpredictable ways. The most prominent remaining symptoms for me are decreased energy and loss of mobility after permanent neuropathy in my hands and feet. I can visualize all the times of taking on projects and exploring new locations, but it remains only possible in my mind.  Like most cancer patients and their families, there looms a guarded awareness. With all the effort of the "king's men, can anyone put this Humpty Dumpty together again?"

Please know the answer is highly individual based on one's place in staging and response to treatment and, of course, age and stamina. But, deep within my heart, I rejoice when I see others ring the bell after their last chemo. It makes me believe they are launching into a new life, hopefully, free of cancer cells. Let that experience be your story.

Here I am

Our greatest superpower is the ability to exercise choice. Unfortunately, so many of us get stuck in our fear of the unknown that we delay what may be inevitable. The end of the road for cancer means relinquishing everything we hold sacred. I ask myself, how do I want it to end? Do I want to quack like a duck or soar like an eagle?

• Do I ask for a revision of chemo delivery to once per month and suffer the effects of higher doses for shorter periods?
• Do I stop all chemo treatment and acknowledge I have come to the end of my ability to fight this disease in this manner?
• Can I hope for some months of normalcy without medication?
• Will this end my relationship with my treatment team?
• Will I face additional pain and suffering more significant than the response to chemo, or perhaps, have some chance to live life to whatever end.
• Most importantly, how does this determination affect my family.

These are my great unknowns. I pray that I will have the dignity and grace to accept whatever I decide. And by the way, I hope to soar like an eagle!

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.