Only the lucky

In the early 1980s, I worked in a business that did small odd jobs. One day the phone rang. A woman said she needed help sorting out and disposing of her late husband’s clothes and possessions.

“I have to tell you,” she said, “he had AIDS. I’ve called about a dozen other places, and no one wants to come out here because they’re afraid of catching it.”

I took a deep breath. One arm instinctively cradled my newly pregnant belly.

AIDS had just exploded into the national consciousness; in fact, the term “AIDS” had been coined only months before. I didn’t know much about it. Sure, I had read that it could only be transmitted through exchange of bodily fluids, but it was just so new – what if there were some ways of catching it that scientists hadn’t discovered yet?

I wanted to do the compassionate thing. But if a dozen other people were afraid of infection...all my sheep-like instincts were kicking in. And there was the baby to think of.

“I’m sorry,” I said. “I’m really sorry. But I’m pregnant and I’m just afraid of taking any extra risks.”

That’s stayed with me all these years because I’m ashamed that my knee-jerk, self-protective prejudice caused me to spurn someone in need.

A similar visceral reaction comes up now when I meet someone with Stage IV breast cancer. Obviously I know beyond a shadow of a doubt that cancer is not “catching.” Yet a few months ago, at an art therapy workshop for cancer patients, when the woman next to me said she had breast cancer that had metastasized to her jaw, I had to grip my chair to keep from getting up. I wanted to put my hands over my ears and rock back and forth singing la la la la to keep from hearing about it. I couldn’t look at her.

Other kinds of cancer don’t freak me out in the same way. It’s the folks who started out with what I have, and now are at the next stage, the one where there is no subsequent stage. I'm scared that that could be my future, so I don't want to know about it.

And evidently some folks at that stage feel reticent in the other direction.

The New York Times ran a story last week about a woman whose breast cancer had metastasized to her spine. She couldn’t bring herself to tell her diagnosis to her breast-cancer support group, all women with early-stage disease, because she didn’t want to scare them. The article said that 150,000 Americans have metastatic breast cancer; some can live for years if their doctors hit upon the right treatment, although the median life expectancy at that stage is 26 months.

(A note about terminology: As I’ve written on here, my cancer metastasized, or spread, to my under-arm lymph nodes. While the number of lymph nodes involved put me at Stage III, it is still considered “localized” breast cancer. Breast cancer that spreads elsewhere in the body beyond the breast or under-arm nodes is Stage IV disease, “metastatic breast cancer.” At that stage it is considered treatable but not curable.)

My chemo roommate yesterday was a chatty older woman I’ll call Madge. After introducing ourselves, we exchanged the standard question, “So what are you in here for?”

(It sounds just like what you’d ask your cell-mate in jail. I always have to restrain myself from saying, “Oh, I knocked over a liquor store, but it was my first offense.”)

“I have breast cancer,” she said.

“Me too.”

“Everyone said I was so lucky,” she went on. “I had the best possible kind of breast cancer, it was just a teeny-tiny tumor that they discovered almost by accident; it hadn’t spread or anything; they found it nice and early.”

“Oh, that’s great.”

“But a year later, it metastasized to my lungs and liver. That was five years ago. I practically live here at the cancer center now.”

“Wow, I’m really sorry to hear that,” I said, groping for the right words. “I hope you don’t mind me saying this, but you look great.”

And she did. She appeared a decade younger than her age of 68, had a full head of her own hair (I can now spot a wig, even a pricey one, from across the room), her face was a pleasant pink, and she seemed relaxed and comfortable.

“Well, I had almost a year of intensive chemotherapy and now I come in every three weeks for this miracle drug Herceptin; I’m lucky they started me on it early before it was a standard treatment for this kind of cancer.”

I hadn’t known someone could live five years with cancer in their lungs. And she didn’t seem in any imminent danger.

“Do you mind telling me how they found out it had spread?” I asked.

“Well, I had a blood test for tumor markers and they were elevated, so then I had a body scan and my lungs and liver lit up. I had a biopsy on my liver just to confirm it, but they never cut into my lungs. They started me right away on heavy-duty chemo, and it shrunk the tumors.”

Just then two hospital chaplains arrived to visit Madge, which implied that maybe things weren’t quite as rosy as I’d been imagining. My chemo nurse came in to get me set up and a medical tech tried to squeeze in to drop off supplies, frowning about how hard it was to navigate our clown-car of a room, which now had seven people crammed into a 10-by-10 space already dominated by the two big Barcaloungers, the three guest chairs (I had a friend there too), the hulking IV pumps, the trash can, the medical-waste disposal can, the counter/cabinets and the blood-pressure machine.

Soon the Benadryl sent me into la-la land, and I drifted off to sleep.

Madge was just getting ready to leave when I woke up, but she settled back down to chat a little more.

“I’ve been coming here so many years, and I’ve met so many great people,” she said. “Of course, so many of them aren’t here anymore.”

That sounded like an avenue I might not want to pursue, but I still had to ask. “You mean because they’re through with treatment?”

“No, I mean they passed on. I know I’m one of the lucky ones. I’ll be coming here forever and ever, but it’s better than the alternative.”