Learning to live with my fear of recurrence
Fear of recurrence felt like a cougar sitting on my shoulder: sometimes docile, sometimes growling, ready to eat me at any moment.
I was diagnosed with breast cancer at age 28 and again at age 34. At first, it was ductal carcinoma in situ, then it was stage II invasive ductal carcinoma. With both diagnoses I found myself with an unshakeable fear that the cancer would return. My second diagnosis made the fear bigger and louder. The stakes were higher; the diagnosis was more aggressive. I felt this stubborn cougar attached to me, scaring me whenever it pleased, so I set out to rid myself of him and move on with my life. I wanted an untethered and hopeful future.
Many people think once treatment ends, life resumes as it was. You go back to who you were and what you were doing before cancer veered you off in a horrific direction. Instead, the end of treatment marked the start of a new era, where I stepped out of the umbrella of active treatment to the downpour of uncertainty. A new type of difficulty arose in the space that used to be filled with doctor’s appointments, overcoming side effects, decision-making, and living in survival mode.
I knew that 30 percent of us early stagers become metastatic, but to me the statistic might as well have been 100 percent. The fact that the cancer could come back at all was enough of a terror to make me unable to breathe and want to crawl out of my skin. There didn’t seem to be a rhyme or reason to who is diagnosed, is rediagnosed or ultimately dies from the disease. There was no safe space. From the moment I was diagnosed, I became acutely aware of my own mortality, a sensation I had never experienced so intimately. The what-ifs dominated my thoughts. What was that ache? What was that sensation? Is that a lump or scar tissue? What am I even looking for? Maybe it’s too scary to pay attention.
But even if my head was in the sand, the fear was there. My cougar was still growling, telling me to be afraid. At my deepest level, I knew that the fear was deceptive, making me feel worse — and insane — but I couldn’t dismiss it. Once it gripped me, the craziness grew until I had no idea what was right or wrong. I searched for understanding, knowing I was not alone in my fear. I thought if I could explain where the fear comes from, I could stop it.
I dug into writings of psychology and science, and learned that we are wired to fear things that could kill us, which was great when we were being chased by big predators. It’s a survival mechanism, not something that I can just remove from my subconscious. Unexpectedly, my quest shifted from removing my cougar to taming him.
Many articles recommend dealing with the fear of recurrence with things like yoga, recognizing emotions, reducing stress, talking to your team, and making healthy choices. While those things may work for some, they couldn’t give me the calm I needed to fall asleep or ease my panic in the middle of the night. They couldn’t stop the dread building in my chest when I felt a sudden headache or leg pain. It didn’t help the self-doubt I felt when hearing about someone else’s diagnosis.
I looked for my own answers. I labeled a notebook “I am okay” and started writing to myself. I wrote about things that made me feel strong. I recorded my dreams, which became more powerful and real on paper. I also wrote my fears. But most importantly, I started a list. On one side, I recorded things that were real. On the other, I wrote things that I made up — things that had no proof. Then I started writing.
No proof: The cancer is back, this isn’t a headache, I’m going to die.
Seeing my fearful thoughts labeled as fabrications and juxtaposed with truths and triumphs allowed me to realize that I had no evidence for the things giving me the most torture.
The real/fake exercise became my biggest weapon, but it didn’t take long to realize that I needed something to help anytime and anywhere, in a moment of weakness. When I was driving down the road and the thoughts emerged; when the panic hit because of some new feeling or bit of news.
Eventually I stumbled on the power of gratitude. I learned that gratitude brought me to the present, and if I was present, I couldn’t fear the future. My mind could not be focused on the present and the future simultaneously. Gratitude became my ninja tool. When I felt fear creep in, I immediately started thinking about what I was grateful for. Instead of fear, I felt love and happiness for the good things in my life. I did this over and over until it stuck.
In addition to gratitude, I learned the power of breathing. Even now, when I am waiting to get my test results, or when the concern of the day takes over, I take big breaths, focus on a long exhale, and repeat.
Now 8 years from my original diagnosis, I’ve learned that it’s not about getting rid of my cougar and curing myself of fear once and for all. It’s about understanding why I am afraid and finding ways to cope. I now understand that fear is part of being human. It’s my reaction to unknowing and uncertainty.
Most importantly, I’ve learned that the only day I need to focus on is today, and if I’m lucky enough, eventually all my todays become the years I crave. By conquering my fear one moment at a time and focusing on living my best life, I have the peace I wanted. Maybe my cougar and I will always be connected, but at least I know his growl is just for show.
Michelle McGree is 37 and lives in Helena, Montana. She was diagnosed with DCIS in 2011 and stage II hormone receptor-positive, HER2-receptor postive breast cancer in 2015. She participated in LBBC's Young Advocate program in 2019.