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Don’t Ask, Don’t Tell—Betsy’s Policy about Her Meds

separator “So what’s going on with you now?” Betsy’s friend Kelly asked her recently. Kelly had heard from a friend that Betsy’s cancer had progressed, creating a need for a medication change.

Betsy, who’s 58, answered, “You know what? My policy now is ‘Don’t ask, don’t tell.’ I’m tired of telling people about what I’m taking. I don’t want to talk about my numbers anymore. When I tell people I had to start a new medication because the old one stopped working, they ask me all kinds of details. ‘What will that do? How does it work?’ And I want to say to them, ‘Go look it up on the Internet if you want to find out about it. It’s not my job to educate you!’ ”

That may sound harsh, but that’s the way Betsy’s feeling these days. She was diagnosed with breast cancer several years ago. At first, she was optimistic. “They found my cancer early, and they said it hadn’t spread. But six months later, I found out it had progressed.”

Betsy’s cancer spread to her bones, and for a while, she took medication that seemed to be keeping the cancer in check. But last summer, she found out that her cancer numbers had gone up and that it was time to try a new medication. Since she’s been on that drug, there’ve been no changes, which to her is a good sign. “When my numbers are the same as they were the last time, that makes me feel better. My doctor says my disease hasn’t changed, which means it’s not worse.”

She has a degree of pain, especially in her hip. But Betsy leads an extremely active life. She works four days a week and she plays golf once a week. She manages to stay positive most of the time. “Sure, I have my days when all I can do is cry, but most of the time, I’m really okay. I’m still able to go out with my friends and play golf. I enjoy my life.”

Betsy explains that she gets tired of talking about her illness all the time. “Sometimes I really regret that I’ve told people about it. It’s draining to talk about it so much,” she says. “And I hate to say this, but sometimes it doesn’t seem sincere when people ask me how I am. I ran into someone at a party, and I hadn’t seen her for two years. She cocked her head to the side and said, ‘Betsy, how are you?’ And I wanted to say, ‘If you really cared how I am, you wouldn’t wait two years to ask me! You’d call me sometimes, you’d ask me if you can bring me dinner’—not that I really want anyone to bring me dinner, but you know what I mean.”

Sometimes, Betsy even wonders whether people are looking for something wrong even when it’s not there. “Soon after I was diagnosed,” she says, “I was in the grocery store and I ran into a friend of my mother’s. She looked at me and said, ‘Betsy, how are you? Have you lost weight?’ But at that time, I was the heaviest I’ve ever been in my life! It was as if she wanted to hear that I had cancer and I was wasting away.”

One thing Betsy’s glad about is that she never told her friends in her golf group about her cancer. “I’m so glad they don’t know about it,” she says. “We have other people in the group who’ve had cancer, and I see everyone asking them, ‘How are you?’ and I’m so glad it’s not me they’re asking. Because you know what? There’s really nothing they can do about it. And then those people are defined by their cancer.”

Betsy’s trying to figure out how she can get her message across to people without offending them. “I’m trying to find a balance now. I don’t want to hurt people’s feelings, but on the other hand, I have to protect myself. I don’t want to go into a lot of detail, because it feels so negative. It’s a downer! If I start chemotherapy and my hair falls out, they’ll know I’m on chemotherapy. But I don’t want to have to tell people all about it.”

That’s why she came up with “Don’t ask, don’t tell.” “I feel like maybe that gets my point across in a way that isn’t hurtful,” she says.

Betsy acknowledges that most people probably mean well when they ask how she’s doing. She understands that they might feel uncomfortable and not know exactly what to say to her.

What would she like people to say about her illness? Would she prefer that they not say anything at all?

“I guess what I’d like is for the people who really do care do stay in touch. Call me every few months just to talk and see how I am. People could say something like, ‘I want you to know that I’m thinking about you, and please let me know if there’s anything I can do.’ ”

Source:
Personal Interview with “Betsy.” (Her name has been changed to protect her privacy.)



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