It Isn't Over Until It's Over: Deciding to Stop Chemotherapy

Before all else, this article begins with a sincere statement of gratitude. To my delight, Social Health Network is again giving me a platform to share my voice.  As you know, the SHN audience understands and seeks different ways to enhance an individual's coping. After all, we are one no matter what illness or journey we face. My process may resonate with others as they encounter life. I am thankful to Bridget Gawinowicz and her team for this trust. Never to be assumed or abused, having the opportunity to express oneself is a sacred place.

Setting the stage

In 2018, when diagnosed with Advanced Ovarian Cancer III C, I knew this stage meant that the tumor had advanced beyond the ovaries. As a result, I realized we were in for a challenge and maybe even a few miracles.

As a risk taker, I flooded my oncologist with difficult questions. Of course, I wanted to know about treatment options. Yet, I needed to understand whether this illness was already on a trajectory to dying. With reluctance, he offered, "Based on the level of involvement of the disease, statistics indicate that you have a four-year survival rate." He added it could be more or it could be less. At the time of this writing, it seems important to acknowledge that I passed the 5 1/2-year mark.

Checking all perspectives

My entire life is about offering the most excellent healthcare to others. As an advanced practice nurse with expertise in grief and loss, I tend to look at our world from all sides. Basically, this practice means exploring all perspectives on the same issue. It requires seeking answers and questioning when information is not certain or readily available. Undoubtedly, this style allows for greater clarity when facing conflict. But it also makes me more sensitive to the needs of others. Of course, there is the physician's perspective, mine, and that of my family and friends. Along the way, it is essential to communicate goals and be certain everyone is in agreement and coordination.

Recognize the needs of the whole family

Although a confusing early experience, I realized that two of my favorite people in the world were present in the room the day I received the news about the course of this cancer. Their reaction to the news was enough to take my breath away. My family perceived a death sentence for their wife and mother. Instinctively, I went to a familiar place and engaged in my usual protection and caregiving. Their experience needed recognition and acknowledgment as they realized they just entered a new reality of feeling overwhelmed.

Fight or flight: The journey begins

In the early days, the action I needed to take was explicit. In my usual manner, this disease was essentially placing me in battle mode. It was necessary to fight through the use of some of the most toxic chemotherapy agents. Even though I felt barely alive, I felt strongly that aggressive treatment was required. I asked myself, "Do I enter the sick role peacefully or engage in life of denial?"

Are we there yet?

This very familiar phrase used by our children often led us to a joyful path, a night at the movies, or even an amusement park. Although this may be true, it is also a sound example of expectation as we proceed with an illness. Even with a clear mind and lots of communication, I entered into a place of existential denial. This is where there is a belief that death comes to other people, but hardly to me. My family and I fought the "good fight" until it became more and more clear that the treatment required to buy a few more days was robbing me of a quality of life.

Now comes the hard part

It is now clear that "All the king's men and all the king's horses could not possibly put me back together again." Chemotherapy and maintenance drugs did their job, but the job is over. It is time to accept the inevitable in order to live a better life. I am now in that place of acceptance and coming to terms with how to spend the rest of my life, despite additional symptoms and trials. Now is the time to pick myself up, brush myself off and learn the tasks of end of life.

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.