The Rules of Cancer

Really nice piece in the New York Times Online yesterday, on their Health section's Well Blog, called "The Rules of Cancer." It's a summary of a longer piece that will appear in Women and Cancer in December, but which is also available now online from CancerConsultants.com in an article called "A Survivor's Compass."

The article is written by a woman named Kathryn Gurland, who has seen two sisters go through a cancer experience, and now serves as a consultant to help others "navigate the system" (hence, "survivor's compass"). She's not so much a consultant with things like complex paperwork (though she may help with that, too); it's more about getting cancer patients to understand that they have control over much of the process of getting better.

It's very practical advice -- understanding that most cancers are not emergencies, and that there is time to stop and gather information about the best course of treatment; that it's OK to ask questions, even if it's the same question over and over because the answers aren't clear; that you should ask for what you need and make people aware of what you do not need.

Two pieces of advice from the article resonated with me especially.

The first is to make sure that everyone you deal with knows that you are a person. People treat people nicely; they don't treat "numbers" very well. I think it's a lot easier to do with your regular oncology team: the receptionist at Dr. R's and I talk about the Red Sox whenever I check in, and the woman who takes my blood knows that I like the radio station that she listens to, and tolerates it when I sing along. But I see them often enough that they know who I am, and they know my story, and they don't treat me like a number.

It's when I deal with other people, who usually aren't in a position to establish a relationship with anyone, that I instinctively let them know that I'm a person, and they need to deal with me as such. It's probably easier for some health professionals to just not get emotionally involved. So I force them to.

I had to have blood drawn at an outside facility a few months ago; the woman drawing my blood never even looked me in the eye. After she found a vein, I said to her, "That's a pretty good vein, isn't it?" She paused for a second, then said, "Actually, yes, it is very good." I told her, "That vein -- it's about the only healthy thing I have going for me." She laughed. We talked for a few minutes after that. She told me about her kids -- she was tired because her teenager was out late and she was waiting up for him.

And I like to mess with the PET scan people most of all. When I need to drink that nasty white milkshake-y thing, I tell them I'm imagining it's a pina colada and that I'm on a beach somewhere. Once, one of them told me I was out of my mind. Another time, when I was in the machine, the tech came on the speaker to ask me how I was doing. I told her she had made me extremely comfortable, and I was falling asleep, and I accused her of getting me groggy and then trying to sell me life insurance. But that made me a person.

The other piece of advice from the article that I really liked: Let everyone know what you don't need. I mostly liked it because of one of her examples -- "Not everyone wants to be thought of as engaging in a battle." I can imagine that's kind of an overwhelming thought for a lot of people, when sometimes just getting through the day quietly is enough of a struggle.

But it reminded me of something that someone told me once. I think it must have been Cancer Survivor's Day, and I told someone that I was a survivor -- anyone who had been diagnosed and was still alive was a survivor. This person, who actually does volunteer work raising money for breast cancer research, told me, "My friend X has breast cancer, and she told me that up until 5 years, you're a cancer victim, then after 5 years, you're a cancer survivor." I told her that victimhood didn't suit me, and that I'll never call myself a victim, and that once I label myself a victim, it means I've given up. I was a survivor, and I didn't plan on waiting five years to be able to call myself that. She was a little surprised at my answer, and so was I -- the whole thing got me a little pissed off -- but for whatever reason, her friend seemed to accept the label "victim" and I don't. It's a nice example of letting people know what you don't need.

Of course, the downside with all of this is that it is advice that's most effective when you know about it before you get cancer. But, as the article says, you start from wherever you are. It's never too late to apply the advice, and start empowering yourself. It's all about moving forward.