By Carol Harvey
Eight years ago, I lay in an icy cold medical room, convinced that my presence there was a case of mistaken identity. I’d had a routine mammogram a week before and thought nothing of it. I was annoyed when I was called back for a second mammogram on the first day of my daughter’s spring break. We had plans to do something fun that day. This was not it.
Immediately after the inconvenient mammogram I was steered into a biopsy room. I chatted with the doctor and radiology tech during the procedure and they answered my naive questions. I then explained that I couldn’t possibly have cancer because I was a self-employed single mom. In just a few months I was going to be an empty nester. Cancer or any life-threatening illness was just not part of that plan. Besides I felt fine.
Right after I said I can’t have cancer, I noticed a teeny glint in the doctor’s eye and the tech mentioned that her mother was a 25-year breast cancer survivor. That’s when I knew. I had cancer. News flash. Cancer does not care about your other plans. Cancer does not follow social etiquette and wait for the best time to interrupt your life. Cancer made its own plans for me.
When I was diagnosed with cancer on that otherwise lovely spring day in 2013, I could not have been more unprepared. I was not in an at-risk group and lived a relatively healthy life. I never thought about statistics as personally relevant. Yet here I was, about to become one of the 1,660,290 people who would be diagnosed with cancer in 2013. A daunting stat and a startling reality.
There was a seismic shift in my world that day and in the months that followed. I knew cancer would change me, if I was lucky enough to survive it. I knew I didn’t have much of a choice in the “live or die” part, but I wanted to have a lot to say about living in the meantime. I knew surgery, chemotherapy, radiation and additional treatments to address the side effects of the original treatments would be tough. At best, there would be a new normal. I was determined that my new normal reflect my values in a more substantial way than my pre-cancer life did.
I didn’t quit my job and move to a foreign country. However, I also didn’t quickly rule it out. Later when my brain resurfaced, I thought about what made me happy and gave me purpose. I considered how I wanted to spend the unspecified, but now strikingly finite amount of time that was the rest of my life.
During active treatment, there were very real physical and emotional constraints as to what I had the time and energy to do. For a while, walking to my mailbox was effort. Naps were a given. I prioritized mindful relaxation. I focused on my breath and let my mind embrace peace. My to-do list became simple: take the best care possible of myself every day. Surprisingly, I didn’t stress about what else needed to be done. The get-stuff-done part of my personality gave way to a focus on healing. I had to heal in order to get stuff done. Further into treatment, as I regained energy, I thought about what I valued most. I made sure I was giving my limited energy to those things first, whether it was time with loved ones, being in nature, or expressing my creativity.
In addition to numerous choices about treatment and how best to nurture myself, I had to consider the overarching question of how I was going to “do cancer.” Was I going to isolate, connect with others or find someplace in between. The quandary was obvious in basic questions such as: Who do I tell? How much do I say? Who do I ask for help? How much help do I accept? It seemed there were no decisions that didn’t loop back to the same question. I had to choose how much to allow my family, friends and community to care for me.
Ouch! As an introvert, it was uncomfortable, even painful, to be open about my cancer and need for help. However, I decided that the introvert in me was going to have to suck it up. Out of necessity, I ultimately made my situation known. I was overwhelmed with support and kindness. I am convinced that the love I received, and my gratitude for it, were deeply healing. I return to that gratitude often; it continues to be a salve for my soul.
Beyond my circle of friends and family, I pondered how visible to be in the larger community as I underwent treatment. Wig or no wig, was one such question. I felt passionately about not hiding as a patient and later as a survivor.
When I was newly diagnosed, I needed to know there were others. I wished I could have walked into my neighborhood grocery store and known that among those picking out organic produce, were others recently diagnosed and survivors of one, five and thirty years. I needed to know there were others who had transitioned from emotional paralysis to living with cancer or after cancer. The presence of those dear ones and strangers gave me hope. I knew hope to be healing and that fact would later compel me to be a visible survivor to others newly diagnosed. I allowed cancer to push me out of my comfort zone and to be an advocate for all survivors. I started by writing about it and offered to talk with others, newly diagnosed. I learned the power of saying the words “I had cancer” in front of friends and strangers.
Not everyone is comfortable talking about cancer. However, there is a growing openness. I have benefited from this candor and want to add to the conversation. I am grateful for those, who when told of my diagnosis, disclosed their own long-ago diagnoses. Survivors are out there. More than I knew. They gave me hope by merely existing and telling me they were there. I believe I empower others and pay that hope forward by sharing my story and being a visible cancer survivor.
Over the past eight years, I’ve come to realize that even though cancer forced me to make many decisions, they all came down to one. How much space was I going to give fear in my life? Just saying the word cancer out loud can be scary. I have developed a deep respect for the damage cancer can do on so many levels. However, respect doesn’t mean I will allow cancer to scare me into silence, inaction or avoidance. At the start of my cancer journey, I decided if I was going to be roughed up by cancer, then I wanted to choose how it changed me. I didn’t want to be the same person I was before cancer, but not because I was dissatisfied with who I had been. That wasn’t it. I wanted something to show for having walked through the fire. I wanted a sticker! For me, that sticker is the ability to choose to be an extrovert (at times) in service of an issue for which I am passionate.
The changes I made continue. I don’t assume that time will always be on my side. Since my diagnosis, I endeavor to pull myself off autopilot whenever I find myself there. I pause and listen to my heart and then act with intention. Or at least that is what I aim to do.
I am now eight years out from my diagnosis and treatment. The traditional five-year post-cancer mark was both precious and meaningless. Much of cancer research only tracks five-year survival rates. It is simply a line in the sand. There is little evidence about six or twelve years, so as a cancer survivor, you take what you can get. Statistically the chance of recurrence after five years is less, but the risk is lifelong. That is why I enthusiastically celebrate every “cancerversary” as another year I can choose to live with less fear, more intention and a curiosity about how life might further change me.
Carol Harvey is a marriage and family therapist in Northern California and a retired Sonoma State University lecturer. She began writing a few years after her cancer diagnosis and hasn’t stopped. She loves making blankets out of old jeans and wool sweaters and yard art out of found objects. She facilitates a free weekly online cancer support group that uses reflective writing techniques. She can be reached at firstname.lastname@example.org