This is the 9th in an ongoing series of posts bringing a critical sociological and feminist lens to my own experiences with endometrial cancer.

It’s taken a trip to Tasmania, Australia to figure out why I hadn’t written a Cancer Land post in over a month. Get ready for the big reveal: I didn’t write because I didn’t want to think about having cancer.

Uh oh. Am I in a state of denial?

In the early months following diagnosis, cancer was all-consuming. My days and nights were filled with reading and rereading pathology reports, choosing which doctors to trust with my life, puzzling out which bodily sensations are significant and which are just sensations, trying to make sense of test results, and learning the new vocabulary and customs of Cancer Land. Cancer, a complex disease and a new social status, felt like the only thing worth writing about.

Now, eight months since my initial diagnosis, I sometimes go through a full morning or afternoon oblivious to cancer. Even more so, during this family visit to Tasmania I’m easily drawn to the novelties of wallabies, poisonous snakes, tree ferns, venomous spiders, intensely delicious apricots, and the linguistic challenges of my granddaughters’ thick Australian accents, all of which demand my full attention. Of course, being thousands of miles away from the Dana Farber Cancer Institute helps too.

A Chat with a Wise Friend

A few days before leaving Boston for Tasmania I sent an email update to friends and family, letting them know about my treatment status and our upcoming trip. A close friend popped over to say good-bye.

“Susan, you look and sound great!” she exclaimed. “You have good color on your face and your hair is starting to grow back. And,” she added, “I loved the newest email update. The earlier ones were full of anger. This one is upbeat and optimistic!”

Her observations were intended to make me feel good, but I have to confess that I reacted negatively. “Thank you for saying that, but you know that my endometrial cancer is incurable; I’ll be in treatment the rest of my probably short life. Yeah, fuzz is growing on my head because my current immunotherapy treatment doesn’t cause hair loss but down the line I’ll probably have treatments with even more awful side-effects than the ones from chemo.”

Seeing the hurt look on the face of this dear friend, I backpedaled a bit. “You’re right. I actually am feeling better. On the days when there are no medical appointments or miserable treatment side-effects to remind me that I have cancer, I fall into a trap of making long term travel and work plans. When that happens, I pull myself back because I don’t want to be in denial.”

“Why not?” she asked. “What would happen if you don’t think about cancer?”

“Ever since I’ve been a mother, I’ve suspected that if I actively think about my kids, bad things somehow won’t happen to them. I guess it’s like I don’t want the universe to catch me unawares. I figure if I keep the kids in my conscious mind then bad things can’t sneak up on us.”

States of Denial

Looking back on that conversation, now from the distance of the southern hemisphere January summer, I wonder about contemporary American disparagement for “being in denial”; that is, refusing to acknowledge uncomfortable truths, obstinately ignoring the facts. We blame denial for causing people to delay needed medical care, dismiss the reality of global warming, refrain from getting rid of cheating spouses, insisting that their substance use is not a problem, refusing to own up to their responsibilities, and reject the interpretations and interventions of therapists.

In Crazy Like Us; The Globalization of the American Psyche (publ. 2011), Ethan Watters describes interactions between American psychotherapists and Sri Lankan people in the wake of the 2004 tsunami in which 230,000 people died. The Americans were determined to encourage Sri Lankans to talk about their feelings in order to cope with what the therapists called PTSD. The local population, however, firmly believed that talking about negative things would cause them to happen and preferred to focus on the present tasks of rebuilding social networks and houses. Their refusal to go along with the therapeutic agenda was interpreted by the Americans as unhealthy denial. What I’m getting at here is that ideas about denial are tied up with religious and other cultural ideals, power hierarchies, and complex structural factors.

Rivers of Denial

American disdain for denial is sometimes expressed through the aphorism / pun: “Denial is a river in Egypt.” (This aphorism is especially popular in Twelve Step settings.) I find the reference to the Nile River particularly jarring. The Nile has been and continues to be the lifeblood of a great civilization. Through its annual flooding and receding, the Nile gives fertility to the land, allowing crops to grow and people to live. I recently learned that “The Nile River runs in Egyptian blood” is a well-known Egyptian adage, typically spoken with pride in the millennia-long connection between a great people and a mighty river.

Another river is the source of spiritual growth, insight, and eventual enlightenment in Hermann Hesse’s classic book Siddhartha (publ. 1922), a modern retelling of the Buddha’s path to enlightenment. Watching and listening to the ever-changing river flow, Siddhartha comes to understand that the river is not a single or constant entity; it is new at every moment with no essence or self.  Once a drop of water flows by, it’s gone, making room for the next and the next and the next drops. Siddhartha finally realizes that impermanence is the very nature of the universe. Embracing the flow of life, death, and rebirth, he is relieved of the burdens of attachment to a remembered past or imagined future, of the futile search for a fixed answer.

Epilogue

I don’t think that cancer has made me wiser or more compassionate. But it has reinforced for me a truth that I previously knew only as an abstract idea: Things change. They always do. That is the nature of existence. As someone in active treatment (immunotherapy at this point) my physical and emotional well-being fluctuate dramatically. There are days when I sleep or rest most of the day and food nauseates me, and days when I work and socialize and even cook. There are days when I feel fortunate to have a wonderful family and excellent medical care, and days when I can’t stop crying.  Some days I don’t want to go out of the house, not only because I lack energy, but because I don’t want strangers to look at me and see a walking embodiment of cancer, an escapee from Cancer Land. Other days I don’t care. And occasionally, on days like today, I proactively share my feelings about having cancer with anyone who is willing to read my posts.

Thinking back to the conversation with my friend, I wonder whether the reason I hadn’t wanted to be in denial – the reason I wanted to keep cancer on my mind – was in hope that if I thought about cancer – made mental offerings to the cancer god – I’d avoid being devastated when a CT scan three or six or nine or eighteen months down the line reveals a recurrence of cancer. Maybe. But at least for now, here in Tasmania, I am coming to think that if denial means refusing to dwell on past traumas or fret about the future, let me have some of that good stuff! Denial can be a solid tool for making the most of each moment, knowing that nothing is permanent in this world – that joy and pain, serenity and suffering, and life and death flow around us as relentlessly, as eternally, as the Nile River.

Acknowledgments

Thanks to Deborah Greniman and Debra Cash for encouraging me to write and helping me sort out my jumbled ideas and turn them into coherent blog posts. Love, love, love to Yishai who made the trip to Tasmania possible and to Yoav, Loren, Maya, Gracie, and Bamba who hosted us, put up with us, and shared their home, lives, and love with us. And thank you to the wonderful friends and family in Newton – because of you I feel good about coming home.