After Karen Stroup was diagnosed with terminal breast cancer in 1994, the doctoral student at Vanderbilt University struggled for weeks over whether or not to continue her last semester of classes--or just sit around and wait to die. One day, while walking across the campus, she bumped into a member of the college's administration whose attempt at sympathy she will never forget.
"He was telling me very kindly that it had been an honor to know me," Stroup recalls. "He was talking about me in the past tense."
As upsetting as it was at that critical juncture of her illness, Stroup now lets out an incredulous chuckle when telling that story. She has outlived her 18-months-to-live prognosis by four years with the help of experimental hormone treatments. So she knows all too well how unprepared, insensitive and unthinking other people can be when suddenly face-to-face with a cancer patient, how otherwise well-intentioned colleagues and friends are tongue-tied under the circumstances.
"Very often, cancer patients hear some of the same things," says Stroup of comments that come out wrong. "Like, 'Think how much you'll save on shampoo and conditioner!' That's a very common one."
Since her diagnosis, Stroup has earned a PhD in religion, and worked long hours pastoring at a church in Springfield, Tenn. She also coauthored with Susan Kuner, Carol Orsborn and Linda Quigley, three like-minded breast-cancer patients, the book "Speak the Language of Healing: Living With Breast Cancer Without Going to War" (Conari Press, $14.95). Its main message is about the words used to talk about cancer.
The macho terminology of warfare and battle, of winning and losing, that dominates today's cancer culture, they say, isn't for everyone--and may not be the most effective way of dealing with a life-threatening disease. Instead, the coauthors make a case for healing illness by "becoming more of the person I am," as Stroup says, and not someone different. The book advocates a kinder, gentler approach to health by examining its spiritual dimensions and meanings--and by creating a new vocabulary for expressing it.
"There is an additional path through an illness and it is a spiritual one that takes account of ourselves other than the fight-or-flight syndrome. For me, it really became a lesson in going ahead and living even though you are dying," says Stroup of her experience, including her fiance leaving her when the disease was at its worst. "You find who your friends really are."
Coinciding with publication of their book last month, the coauthors held a nationwide contest. All of them already had compared notes on the idiotic things people blather to cancer patients. So they invited other cancer patients to send entries, 50 words or less, describing the worst comments they had heard to the first annual "Stupidest Thing That Someone Ever Said to Me About My Cancer" contest. By late October, when the contest officially closed, the coauthors had received more than 500 entries, many of which are posted on their Web site, www.speakhealing.com.
"Everybody diagnosed with a serious disease has one or two comments you just can't shake," says Orsborn. "This contest seems to have been a wonderful, cathartic way for people to dump some of the pain from those comments."
The contest also is providing some comic relief where there are usually few opportunities to laugh, says Orsborn. "And we would much rather have somebody say something stupid to us than avoid us, or walk out on us."
Consider the winning entry, from a woman in Denver, N.C.: "I told a friend that I had finally gotten a firm date for my bilateral mastectomy. Her sincere comment was 'That must be a load off your chest.' "
Other entries ranged from humorous to hurting. Among them:
* The most outrageous comment I received while struggling with non-Hodgkin's lymphoma: "Well, this must account for several lifetimes of bad karma!"
* After Hodgkin's disease and ovarian cancer: "You can always adopt," "You need to do more sit-ups," and "I would not have hired her had I known she had cancer."
* "Oh, you are so lucky to have breast cancer! It's the best kind because all they do is cut off your breast . . . and besides, you are over 50. Who looks at you in the first place?"
* From the technician giving me my first infusion against the tumor in my breast bone, after a bit of chit-chat about me: "Well, you've had a good life."
* "You will be a Better Person for having gone through all this!"
* "Well, luckily you're small-breasted, it won't make much of a difference; no one will even notice."
* Spoken by my ex-boyfriend right after I was diagnosed with breast cancer: "Well, at least you know how you're going to die now."
"Most of these people are well-meaning," says Orsborn, advising that rather than blurting out something you will live to regret, it's better to say something unassuming such as, "I love you so much I'm afraid I'll say something wrong."
Other types of supportive comments that she recommends: "I have no idea what you must be feeling but I am a good listener," "I'm holding your hope for you when you can't," and, "I'm there for you 1,000 percent."
Inappropriate comments may be indicative that our society isn't good at dealing with things that spin out of our control, says Orsborn. "We know how to do things more and better. We can try harder to use our willpower to gain mastery over our situation. But getting cancer is beyond our control."
Learning how to talk about cancer isn't, she says, adding, "We think this is the beginning volley of a growing consciousness about how we deal with this disease."
CAPTION: Authors, from left: Linda Quigley, Susan Kuner, Karen Stroup and Carol Orsborn.