Monday, June 2, 2008

When thumbs up is no comfort

The New York Times just published an article about how attitudes and images of cancer can interfere with coping with the disease.

This is a recurring concern for me. Although I'm a big believer in positive attitude, in fighting, in living in the present moment, etc., all of these models are imperfect. Worse, some of them can feel punitive if things don't go well -- after all, attitudes don't kill, tumors do. (The Times article page helpfully linked to a metastudy that analyzed studies relating to the influence of psychology on cancer survival and recovery. Bottom line from the abstract: "here is little consistent evidence that psychological coping styles play an important part in survival from or recurrence of cancer. People with cancer should not feel pressured into adopting particular coping styles to improve survival or reduce the risk of recurrence.")

I'll share more of my thoughts on this soon -- as well as some from the late Alice Trillin, who has brilliant thoughts about the limitations of the different "talismans" we use to try to make cancer less scary.

Here's just a little taste from the Times piece:

Dr. Gary M. Reisfield, a palliative care specialist at the University of Florida, Jacksonville, believes that the language used by cancer patients and their supporters can galvanize or constrain them. Over the last 40 years, war has become the most common metaphor, with patients girding themselves against the enemy, doctors as generals, medicines as weapons. When the news broke about Senator Kennedy, he was ubiquitously described as a fighter. While the metaphor may be apt for some, said Dr. Reisfield, who has written about cancer metaphors, it may be a poor choice for others.

“Metaphors don’t just describe reality, they create reality,” he said. “You think you have to fight this war, and people expect you to fight.” But many patients must balance arduous, often ineffective therapy with quality-of-life issues. The war metaphor, he said, places them in retreat, or as losing a battle, when, in fact, they may have made peace with their decisions.

To describe a patient’s process through illness, he prefers the more richly ambiguous metaphor of a journey: its byways, crossroads, U-turns; its changing destinations; its absence of win, lose or fail.

I tend to think of cancer as a "fight," not a journey (facile joke: who'd want to travel to sarcomaland?), but I'm more and more aware of the problems with "fighting." To name just one, I think being too invested in the fight is what makes finishing initial treatment so psychologically difficult for many people, myself included.

I dropped into a pretty black pit of depression when I couldn't actively "fight" for a while. Suddenly my purpose was gone; I couldn't find larger meaning in my ongoing extreme discomfort from the grueling treatment. I am trying to learn from that and I'm working deliberately to think of the illness in different terms, including as a means of growing personally and seeing the world more clearly and meaningfully.

Of course, I'm still childish and I still want to kick the cancer's ass.


By the way, myxoid chondrosarcoma (or was it a leiomyosarcoma?) survivor Brian Wickman is quoted extensively in the piece. He's a cool guy. A YouTube video of him speaking to a group that hooks cancer survivors up with each other for rafting and kayaking adventures is here.


empy said...

I have found that some people really need to think of cancer as a battle or a war. This is the coping method that works best for them until the very end, no matter what. Their families, of course, fall in line with whatever works for them. When I encounter these families, sometimes I feel like they believe that anyone who doesn't "fight the war" with "strength" and a "positive attitude" is somehow not doing enough, or not doing good enough. But it's not that. It's just that they love someone who is fighting, and they think the world of this person, and they admire the person's strength.

Other people, like me...I needed to think of cancer as a part of my journey. Thinking of my life as a war doesn't suit my view of the world, and it doesn't help my mental health either. Of course, my loved ones support me in the way that I see my life, and if you were to hear them bragging about me, you probably wouldn't hear them using fighting terminology.

Then there are people who have a mix of both views, and that makes sense. Sometimes the only way to get through grueling treatment is to fight for your life. We think the way that we need to think to get through!

I try to be open to however people see their own lives. But it does get me when people talk about someone who "lost the battle" to cancer. It seems to imply that if they had fought harder, they would have won. And I guess it bugs me that people expect everyone with cancer to "fight." But people don't necessarily know WHAT to think about all of this when they've never been through it themselves.

SG said...

Hey empy, so glad to see you here. I, too, prefer the journey metaphor -- but I also understand the appeal of the battle. After all, with journeys most of us tend to think of a destination, and the destination with a serious cancer is not necessarily something you want to reach. "Victory" is simpler. No final thoughts here... I need to think it through more.
I am completely with you on the last paragraph; that's a lot of why I harp on these metaphors and the way they both empower and limit us. I also hate "lost the battle." And while I really admire Lance Armstrong, I cried hard when I read his book shortly after diagnosis -- some part of me thought, "This guy is basically Superman, and I'm basically a wimp, how could I possibly survive?"