My Life with Cancer

But a little knowledge can be a dangerous and depressing thing. The Internet is a fantastic resource for patients, who increasingly use it to ask pertinent questions of their doctors. It can also baffle and disorient. Some of what I read about mantle cell lymphoma was out of date or even wrong, and logging on began to make me feel anxious. I thought Emily was in denial and she thought I was an easy mark for every cancer "cure." We quarreled about it. When I tasted the rank "noni juice" I'd ordered on the Internet, I knew she was right.

One Web resource, however, was indispensable. My sister set up an account with a nonprofit site called caringbridge.org that brought order and even pleasure to my communication with the outside world. Instead of having to repeat my story endlessly on the phone or in individual e-mails, I could offer periodic updates, then watch in amazement and gratitude as the good wishes, parodies and embarrassing stories about me from fourth grade rolled in. The site kept practically everyone in my universe informed while easing their sense of helplessness—and mine. The postings of my children and my mother-in-law became particular crowd-pleasers and before long the idea spread through parts of the media world. Even B.D. from "Doonesbury," home from Iraq and hospitalized at Walter Reed, got a caringbridge site.

I decided early not to keep my cancer a secret. I felt enough stress already without trying to figure out who knew and who didn't. One morning on the radio, Don Imus, sensing something in my voice, asked in his inimitable way why I sounded awful. I blurted out to a few million listeners that I was headed for chemo that day. But I kept the prognosis under wraps for fear that people would pity me or write me off. By then I knew that for all the new openness about cancer, sick people still get sidelined.

The idea of joining a support group held no appeal for me, in part because my disease is so rare and I had little interest in hearing about other kinds of cancer. ("My sister-in-law's cousin had prostate cancer and he's doing fine," I was once told, unhelpfully.) But we mantle cell survivors found each other by phone and e-mail. Unfortunately, many hospitals still do little or nothing to connect newly diagnosed patients with those who have survived the same disease for several years, though this is what we crave.

Most people I know—and many I don't—were unbelievably supportive, offering prayers and comfort when I needed it most. I can't even conceive how people without close family (my brother even shaved his head in solidarity), friends and co-workers can survive the ordeal. Millions of Americans live alone and fight the disease mostly alone. They are the heroic ones.

The experience changes your relationship with friends, as some who were once mere acquaintances step up magnificently and others who were closer fade away. The long faces and doleful "How are you, really?" false intimacies were less welcome than the cheerful ribbing and sense I was being viewed normally. Emily and I got a laugh out of those people so interested in my initial symptoms that we concluded the inquiries into my health were more about them and whether the indigestion they were experiencing might be cancer. Others just wanted to know whether I had "beaten" it so they could check me off as one less person to worry about. Even now, it's just inaccurate to say that I have.