17 Years Later, Stage 4 Survivor Is Savoring a Life Well Lived

Each year on a day in January — the 15th, to be precise — I go to a

Within days, a thunderous chorus comes back, 200 voices, 300. A few of them ask, “How can this be?” Sometimes they begin, “I’m crying.” Many answer in kind: “I’m here, too. It’s now three years.” “Five years.” “Three months.” “Seven.”

What we’re doing, in a way, is checking for lights in the darkness.

Now there probably aren’t a lot of Web sites where the announcement that you’re around and breathing would cause anyone to take notice, let alone respond. But this is a site for people with Stage 4 breast cancer, something I’ve had for 17 years. The average life expectancy with the diagnosis is 30 months, so this is a little like saying I’m 172 years old: seemingly impossible. But it’s not. I first found I had the illness in 1988, and it was rediagnosed as Stage 4 in 1993. That’s 22 years all together, which is the reason I post each year on the anniversary of the day I learned my cancer was back: to let women know that it happens, that people do live with this for years.

I tell them that when the cancer returned, it came on so fast, spread so quickly, that I was given a year or two to live. Within months, the disease turned vicious. It started breaking bones from within, and was coming close to severing my spinal cord.

Nothing was working, till a doctor tried a hormone treatment no one used much anymore, and the cancer turned and retreated, snarling. It remains sluggish but active. Every so often, it rears its head; when it does, we switch treatments and it slides back down. In that way, I stay alive.

I tell them: you just don’t know.

Two and a half years after the Stage 4 diagnosis, I confessed to my mother that the doctors had said I had two years to live, tops. I’d kept this information to myself because if you say it, it’s true. I told her this laughing, as if we were trading preposterous stories. “Well, I guess you’re going to have to hold your breath if you’re going to make that deadline,” she replied, in her slow Southern drawl when I gave my previously stated expiration date.

I spent the next five years holding my breath, then did the same for another five. I enacted every New Year’s resolution, past and future, all at once. Quit work that had grown stale and became a writer. Wrote a book. Went to India on assignment, fell in love with the language that was swirling around me, went back to live for a year and learn Hindi. Didn’t realize the reason I’d come to dislike that hyperbolically overachieving Lance Armstrong was that his behavior was too familiar. Take a nap, Lance! I’d think to myself, though in truth I couldn’t either.

But if I was verging on radical levels of life consumption, I had a reason: No one had told me I wasn’t going to die soon. About 12 years out, my doctor finally did.

There’s a small subcategory of people with Stage 4 breast cancer, it turned out, who live for years and years. “Twenty. Thirty,” said my doctor, George Raptis. This group constitutes about 2 percent of all cases. Doctors can’t predict who will fall into this category. They can’t say you’re in it till you’re in it — till you’ve racked up the necessary miles.

The reason they can’t is that for all the pink-ribbon hoopla, despite the hundreds of millions that have been poured into breast cancer research, hardly anyone has looked into the why of long-distance survival; not one doctor has specialized in this field.

Here’s pretty much the sum of collective knowledge: People in this group tend to have disease that has spread to the bone (as opposed to lung or liver, say) and feeds on estrogen. They tend to do well on hormone treatments. End of commonly known story.

But as Dr. Gabriel N. Hortobagyi at M.D. Anderson Cancer Center in Houston told me, you can also find women whose breast cancer spread to organs other than bone, for whom hormone therapy did exactly nothing, who had their lesions surgically excised and who have been free of cancer for 30 years. None of these women could have expected to live.

You just don’t know, and neither, unfortunately, does the medical field.

One reason, as the breast surgeon Dr. Susan Love told me, is that “many clinical trials are funded by the drug companies to run for five years,” obviously not enough if you’re investigating long-term survivors. But through her institute, the Alain Ducasse, no defiant red Maserati. All I wanted was ordinary life back, for ordinary life, it became utterly clear, is more valuable than anything else.

I don’t think to say it, and I never will. The women on the site already know that.