Tuesday, November 20, 2012

cancer and chronicity


A recent connection with the Fred Hutchinson Cancer Research Center has drawn my mind recurrently to the processes of 'beating' cancer lately. While 'Fred Hutch' does much more than cancer research, it still stands as a beacon of experimental treatment for the patients that have exceeded the capabilities of first-line treatments at their primary medical institutions. Cancer intrigues me simply because it intrigues us, as a society of bodies continually at some point in a matrix of risk, never being allowed to truly 'forget' about cancer. This perpetual and innate susceptibility is one of the driving forces, I argue, behind our society's 'beef' with cancer. Publicly engaged in a enduring conflict with a diagnosis that creeps, attacks, kills and then haunts has generated metaphors alluding to fights, battles, wars and armed conflict. What I am interested in is the ways in which this 'fight' with cancer is articulated in treatment discourse, survivor narratives and cultural processes. We wage large, visible wars against cancer, commercially, through rubber bracelets and 'walks for the cure' but even more crucial are the small wars of the every-day against treatment side-effects, the 'work' of cancer treatment and what it means to have such a reticent cell living in your body. Having a chronic condition myself which requires a fairly involving treatment regime, I have come to a closer understanding of those with incurable cancers, HIV/AIDS and other chronic and profoundly self-altering diagnosis. There exists a 'work' of a chronic condition that itself is a continual financial, energy and soul draining activity. Unlike my condition, however, cancer can be fatal and a separately generated anxiety is produced just from that abiding threat alone. The permanent structural impairment from surgical and chemical treatment alike also forever alter a cancer patient's sense of self, bodily integrity and even gender identities. I just read a great piece from the New York Times addressing cancer survival and perused their ongoing collage of cancer 'survivors' as they depict and give voice to what it means to be 'post-cancer'. These are a few particularly telling narratives:


On what it means to 'fight'

If've learned one important truth, it is the meaning of the phrase "fighting cancer." It was showing up when I wanted to crawl away. It was crying when I needed to, and to shouting, "enough!"
Bob Skye, Hoboken, NJ


On continuing care

I've had all the usual problems men have after prostate cancer surgery four years ago. I've learned to live with them although it's been a life-altering experience. My surgeon said that it (the operation) would be a speed bump on the road to the rest of my life. All I can say is thanks for saving my life but that was one hell of a speed bump!
Jim Porter, Danville, KY

On anger

(But) I am more angry. Angry at the damage chemo has done to my heart and lungs, angry that it has stolen my loved ones from me, angry at the constant anxiety about recurrence that it leaves and at my guilt for not living a perfect toxin-free life.
Please, don't ever tell a cancer patient that they are lucky to have it.
Laurie Comings, Alexandria, VA

On revenge

I have a vendetta against cancer and I will not stop fighting until I am dancing on its grave.
Virginia Fasulo, New Jersey


On continuing anxieties

Now, three years since surgery and chemotherapy for a lymph node presentation of ovarian cancer, I am struggling to know myself. Being "watched for recurrence" unnerves me and drains me. I hope I can absorb it better as time goes on.
Barbara Moore, Washington, D.C.

On gender identity

Physically of course I'm still suffering of the late side effects of all these poisons I got, but the biggest part to work on is the psychological side. Breast cancer does not only take away a part of a female body, but it takes away a big part of one's femininity.
Daniela Marullo, Brussels, Belgium

And on losing the fight

Can you in all good conscience say there is 'life after cancer' for anyone? There's only 'life with cancer' and only if you are lucky enough.
Karen, Espoo, Finland

On the ambiguities of remission

Mine is asleep now, it feels like a little bird on my shoulder that whispers in my ear, "you may die today." How wonderful. No time to waste. Change your mind, you can change the world.
Scott Williams, United States

On post-cancer care

In the last ten years, life as I knew it came to an end.
I am no longer an active, healthy, sports-minded individual. The side effects from cancer drugs, cut that part of my life short. No doctor listens or takes an interest in my new challenges.
It's a shame there is no after-cancer treatment or care in this country. You do the best you can.
Susan Brockert,Brazoria, TX


These are responses to the question, 'how is life different after cancer?'. From these we can deduce that chronic and/or life threatening illness has fundamentally transforming effects on the human psyche. The transformative process of ill-health speaks to the essential human consideration of sickness as significant experience.

I remember driving by Fred Hutch when I was young and wondering what life is like for those in there, being treated. For those dying and desparate enough to travel across the state, relocating, if only temporarily, their family, their lives, for a chance at winning these wars. It was honestly frightening for me, to think of such a disruption and downright incomprehensible to think of what it might be like to be fighting cancer or even worse, giving up the fight.
These arousings revisit me today and now, as an anthropologist, I reframe those strong emotions into queries around the human condition in chronic illness and what it means to fight and win/lose such battles. Chronicity, however, takes residence somewhere between the hope of cure or remission and acute, life-threatening crisis. Chronic conditions tend to be habituated, taken into ones life and rooted in processes and practices of self-care. These practices can be therapeutic, taxing, despised. For the above cancer patients, cancer has filled their post-crisis days with anxieties, fears and the draining emotional labor of redefining the self.
With so much public import placed on 'beating' cancer, I question if little is left to place on the post-cancer life. How can cancer affect so many lives but still we obscure (avoid?) the residue of acute cancer treatment? Isn't it time we asked: what happens after treatment? Thoughts on these questionings are welcome!



Parker-Pope, Tara. 2010. "Picture Your Life After Cancer", The New York Times, April 8. http://www.nytimes.com/interactive/2010/04/08/health/cancer-survivor-photos.html?ref=health#index">ongoing collage (accessed 11/20/12).