Measured how you might ask. In number of years, you survived? Perhaps it is the impact of the treatment and how you are called to endure discomfort, pain, and loss you did not know you would experience? Measured by the times you survived breast cancer? Can the emotional toll of breast cancer be measured?
2002: The Emotional Toll
I had breast cancer in 2002 for the first time. The simple description: left breast lobular carcinoma with no lymph node involvement. The emotional toll kicked in for me on three strong fronts:
- Telling my husband and two young sons. One in middle school and the other just starting his first year in college living over two thousand miles away.
- Hearing my treatment protocol: surgery, chemotherapy, and radiation followed by five years of Tamoxifen.
- The physical and emotional toll of being surrounded by cancer patients.
There is no way to describe the moment you hear the words, “You have breast cancer,” or for that matter any kind of cancer. Telling your immediate family and beginning phones calls to extended family and friends caused me to cry endlessly. I lost weight without even trying. Sitting in an oncology office in front of a stranger listening to what is about to happen to your body to kill cancers cells feels like being in a cavernous pit. The words fall on your ears, overloading your brain. All you hear is “hair loss, nausea, weakness, mouth sores, fatigue…”
Survivor’s Guilt
I spoke to a woman this week who was recently diagnosed with another type of cancer. We have known each other for a while. I was saddened to hear of her diagnosis, but I smiled at her and said how very happy I was it was caught early. Her surgery declared her cancer free. As she began to unravel her story I saw anxiety building up in her face. She began to choke up as she told me about her experience going to the cancer center to speak to an oncologist. Her treatment would not have a need for chemo or radiation.
The tears were brought on from what is referred to as survivors guilt. Knowing she was going to walk out of the lobby not needing any further treatment brought on mixed emotions. Leaving a room full of people who look and act sick brought on an emotional response of remorse and sadness for those she was surrounded by that day at her oncology visit.
I had days I showed up for my chemotherapy treatments with mouth sores, baldness, red, swollen eyes, and nausea. It was a club I didn’t want to be in. And yet, I would see patients at MD Anderson in graver condition than I. The emotional toll it took on me was a somber affect. I made eye contact with some and others I had to look away seeing them huddled in their blankets hunched over in a chair with an IV poll of chemotherapy next to them. You know, if you are reading this and have had breast cancer what this emotional toll means, whether you were the “other person” or the one huddled in the blanket.
2014: Emotional Toll
When you do all the things you are told to do the first time you have cancer and it comes back twelve years later, this patient was pissed. There are no other words to describe my feelings the day I found out for the second time I had breast cancer. I haven’t changed that word describing the emotional feeling I felt over the years. How did this happen? I was not a patient advocate at the time, nor was it in my personal plan to open a nonprofit organization. The imminent work that lie ahead of me was unknown. When my breast cancer returned, it catapulted me into work that admittedly takes an emotional toll on me some days.
Time stamping this blog marks the ten-year anniversary month of my second diagnosis. The emotional toll I see from a community I serve includes some of the following. It certainly doesn’t cover all I see and witness.
- Depression and anxiety from treatment and multiple surgeries.
- Financial toxicity related to medical bills and lack of insurance coverage.
- Access to care brining fear to patients who are in rural areas or not near a center of surgical excellence for breast reconstruction.
- Family loss due to misunderstanding the emotional toll of breast cancer. Yes, I am specifically talking about divorce, estranged family who simply don’t understand the toll and impact of this diagnosis.
- Complications from surgery or treatment.
- The worst is the loss of friends. In the breast cancer space, it comes at a difficult emotional toll.
Can the Emotional Toll of Breast Cancer Really be Measured?
I fear the answer is no. Only those who have had it can answer this question. My sage advice is finding a community of support, locally or online. When you know someone experiences similar emotional trauma from the affects of breast cancer, it brings you into a tribe of people who understand. When it’s time to take a break from you tribe, do so without guilt. Do it for your personal and emotional well-being.
I could write so much more about this topic since these emotions are hitting me hard this week as I look back on my second diagnosis. What was the strongest emotional toll breast cancer is having or had on you? I would be honored to hear from you because, I know.
I am here with a grateful heart for all the year 2002 and 2014 brought and the resilience I never knew I possessed. Do not judge yourself for being weak, frail, or disheartened during a challenging time. Measure you success in sweet moments, not from a disease that takes an emotional toll on so many.
Terri Coutee