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The balance between life and disease

Like many other Americans lately, I've found myself thinking hard about -- and personally identifying with -- the dilemma faced by Elizabeth Edwards and her husband, John, the former senator and would-be president.

His career, her health. Not an easy balancing act. Who should sacrifice for whom? How much? Nobody wants to be -- or live with -- a martyr. But nobody wants to deal with -- or watch a loved one deal with -- cancer unsupported, either. Ultimately, everybody's mental health counts -- the sick partner's, the healthy one's, and the kids.'

For 11 years, my husband, Tom, and I grappled with these dilemmas first because of his lymphoma and for the last five or six years because of his prostate cancer. We knew, of course, that there were millions of other couples in similar situations, but that didn't help much. We had to juggle each other's needs -- and each make sense of our own -- with every up and down of the cancer roller coaster.

He had a need, which was sometimes tough for me, to minimize things and to remain fiercely independent. I was more emotional.

He wanted to go through his first chemotherapy infusions alone, reading his physics journals and his newspapers. I wanted to be there. That's what "good" wives did. But this particular man felt my particular presence would overly dramatize things. He could do better, he felt, pretending that he was just sitting there reading, as usual, even while powerful drugs dripped into his arm.

So I let him. I developed a kind of rule: W e worked as a team, but he was the patient, so on big decisions, he got two votes and I got one. Once, though, because he had seemed more anxious than usual before an infusion, I showed up at the hospital uninvited. That time, we were both glad I did.

Like Elizabeth Edwards, Tom, who died last year, was amazingly generous in encouraging me to keep up my own life, almost to the very end, when I did drop everything. So, for year after uncertain year, he would tell me to keep working, keep swimming, keep singing with my singing group, keep going to my book group, keep going to see my grandkids. All of which I did, with some guilt, but also, to be honest, with considerable relief. Unlike Tom, I had the luxury of getting away from cancer once in a while, and I like to think it helped us both that I did.

Still, I asked him over and over how, given his situation, he could be so generous. I didn't think I would be. Tom didn't seem to see it as generosity. He saw it as protecting his best asset -- me -- from despair and burnout.

I never did burn out, but I did despair. We spent hours and hours over the years talking, and crying, about Tom's fears and sadness and my dread of losing him. I always felt selfish and weak when he sympathized with my fear of life without him. But he kept telling me that precisely because of that, I had the tougher job. I'm not sure if that's correct, but his acknowledgement of how tough it was for me helped.

When I first read of the Edwards' decision to stay in the presidential race, I was horrified. I thought he was being utterly selfish, that they were painting an overly optimistic view of her prognosis and that he should drop out now and focus on being her husband.

But then I thought about her, and Tom. From Tom's example, I could believe that from the bottom of her soul, she would not want him to give up his (and their) dream, would not want to take on the "sick role" any sooner than necessary, would not want to be a burden. I think she is absolutely right to urge him to keep running. I'm less sure whether he's right to agree.

Unlike Tom and me, the Edwardses' case involves the rest of the country, or could. If he wins and she's dying, how could he possibly balance her needs against the world's?

But they're not there yet. Cancer is a chronic disease until it becomes a fatal one, and, as Tom and I discovered, it's quite possible to have many good, relatively disease-free times for many years.

On the other hand, cancer is a crapshoot. You never quite know how pessimistic or optimistic to be. You never quite know which doctors are giving it to you straight, or who's right about the statistics and the studies and the chances.

So you do your best, individually and together. And you never really know if you did it "right."