Living with Cancer on Your Own Terms
Practical Guidance from a Resilience Expert and Cancer Survivor
A diagnosis of cancer can elicit a wide range of emotions. It can challenge the way you see and interact with the world. Cancer forces people to navigate the murky gray area of life, the part often filled with uncertainty and confusion.
As a four-time cancer survivor and psycho-oncology researcher, I live in the gray area of life, oscillating between patient, scientist, educator, and father of three miracle daughters. Diagnosed with stage III testicular cancer in 1994, renal cell carcinoma in 1995, stage III papillary thyroid cancer in 2016, and recurrence of thyroid disease in 2023, I have experienced, firsthand, the challenge of living with cancer.
Pausing gives you an opportunity to get rid of the clutter in your life that is draining your energy and refocus on what brings you joy.
What I’ve Learned as a Cancer Survivor & Researcher
At age 24, shortly out of business school, an accident sent me to the doctor and changed my life forever. I was diagnosed with testicular cancer that had spread to my lymph nodes and both lungs. I was given a 50-percent chance of survival and no chance of having children because of the fertility-harming treatment. Then, as if testicular cancer wasn’t bad enough, three months later, I was told I had an unrelated second cancer – renal cell carcinoma. My career and life plans came to an abrupt halt as I was forced to navigate a whole new world.
Following several surgeries and aggressive chemotherapy, I made a vow to dedicate my life to fighting cancer if I survived. Making good on this promise, at age 26, I quit my job and went back to school, earning three graduate degrees, including a PhD. Now a tenured professor at UConn, I conduct research on resilience, with a focus on understanding evidence-based strategies that help individuals adjust to – and live with – a diagnosis of cancer. Here are a few things I have learned.
You must take back control from cancer.
Cancer survivors often report a loss of control in various aspects of life – relationships, work, finances, physical appearance, independence, and the list goes on. Having a sense of control over our lives is vital because it makes us feel safe and secure, provides a degree of predictability in life, and improves our well-being and ability to adjust. However, attempting to control the uncontrollable can lead to disappointment, anxiety, and a drain on your emotional energy.
However, I found it easier to accept disappointments and challenges when I focused on the aspects of the situation that I did have some control over.
Think of your energy capacity as a tank of gasoline in a car. A full tank can only take you so far. So, it’s important to decide how you want to spend your limited emotional energy while fighting cancer. You don’t want to run out of gas before you get to where you want to go.
My father, a business school professor, would always tell me not to worry about things beyond my control because it was a waste of energy. Admittedly, this was often difficult for me as a young adult with cancer. However, I found it easier to accept disappointments and challenges when I focused on the aspects of the situation that I did have some control over. For example, when I was told my chemotherapy would make me lose my hair, I decided to have a head shaving party and asked one of my closest friends to buzz my head. Needless to say, we had lots of laughs and I ended up with a pretty cool mohawk. I had no control over whether my hair would fall out, but I made sure losing my hair was done on my terms and not cancer’s.
You have the power to spend your energy on things within your control – such as making healthy lifestyle choices, educating yourself about the disease, participating in medical decisions, and choosing the relationships that you keep – while at the same time embracing the idea of letting go of what you cannot control. This shift in mindset takes practice, but the impact it will have on your mental health can be liberating.
Managing your emotional response is crucial.
We know there are many aspects of cancer that we simply cannot control. However, we can control how we respond to the challenges it brings. In psychology, this is called emotion regulation. Research shows that cancer survivors who are better able to manage their emotional response to stress are more resilient and report lower levels of distress, fewer fears of recurrence, less fatigue, and better physical function.
Shifting from a place of emotional reaction to one of emotional response can lower the intensity of our emotions, which can, in turn, improve communication with healthcare providers, family, and friends. Emotional reactions are immediate and informed by baked-in, survival-oriented defense mechanisms. They often cloud our judgement and hinder rational thought processes. Emotional responses, on the other hand, come from a place of emotional intelligence, which is your ability to monitor, evaluate, and modify your emotional response to a stressful situation.
Having awareness and control of our emotions is not exactly easy. It requires constant practice. However, there are some cognitive strategies that can help you learn to control your emotions. These include paying attention to and observing how you feel and behave in different situations, questioning your own opinions and beliefs and being open to other viewpoints, taking responsibility for and ownership of your feelings and recognizing where they come from, and most importantly, taking a break when things get heated. This means you should hit pause when you have an emotional reaction and revisit the issue sometime later, after you have processed the information and analyzed your emotions.
Don’t be afraid to hit the pause button.
Moving forward with cancer is possible; however, finding your optimal pace and knowing when to press pause and reset is critical. Not only is pausing an essential component of emotion regulation, but it also can be transformative during the cancer journey.
Research shows that cancer survivors who are better able to manage their emotional response to stress are more resilient and report lower levels of distress, fewer fears of recurrence, less fatigue, and better physical function.
Hitting the pause button can help us see more clearly the things that are in our control, check the level in our emotional gas tank, decide how we want to use our energy, and assess our support systems. Pausing gives you an opportunity to get rid of the clutter in your life that is draining your energy and refocus on what brings you joy.
Living Life on My Own Terms Amidst the Uncertainty of Cancer
In 2016, I had a mountain bike accident that sent me to the emergency room with broken ribs, a dislocated finger, facial lacerations, and a concussion. Upon my discharge, the nurse informed me that the CT scan revealed a mass on my thyroid and suggested I follow up with my primary care physician. The mass turned out to be stage III thyroid cancer that had spread to several lymph nodes in my neck.
Cancer has a funny way of hitting that pause button for you if you aren’t paying attention to the pace of your life or the way in which you’re interacting with the world. As I write this, I am currently dealing with a recurrence, and the all too familiar uncertainty of not knowing if the treatment has worked. Strangely enough, I am at peace with my life.
One of my favorite inspirational quotes is from Stuart Scott, a former ESPN analyst who battled cancer. While accepting the Jimmy V Perseverance Award at the ESPYs, Scott said, “When you die, that does not mean you lose to cancer. You beat cancer by how you live, why you live, and the manner in which you live.”
My journey is not over. As I continue to navigate the murky gray area of living with cancer, I will do so on my own terms, employing strategies I have discovered from my research, sharing my knowledge with others, living with passion, giving back, and most importantly, being the best possible father to my three incredible daughters.
Dr. Keith Bellizzi is a professor of gerontology at the University of Connecticut in Storrs, CT. As a psycho-oncologist, he is an expert in resilience, behavior change, healthy aging, and cancer survivorship. To learn more about Dr. Bellizzi, visit cancersurvivorship.uconn.edu, contact him by email at email@example.com, or follow his work on Twitter: @BellizziKeith.
This article was published in Coping® with Cancer magazine, Spring/Summer 2023.