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My nickname is Dr. Wu. It’s not that I have any medical training—a friend gave me the name because of the initials of my hyphenated last name and because I once "healed" his computer (merely by yelling at it). But in ways I never wanted, I’ve also become a medical specialist. I’m an authority on the thyroid cancer that was diagnosed in my throat last Christmastime. My self-administered medical training—which shows how the Internet is only beginning to transform medicine—began with a routine physical. My doctor found a lump on my thyroid. She recommended a biopsy. On Dec. 26, I had the memorable experience of having someone poke medium-size needles directly into my Adam’s apple. Six times. My inexplicably cheerful doctor finished with a flourish and said she’d telephone me in a few days with the results. It was only the next morning, at 8:30, when she called. I’ll always remember what I was doing. I was sleeping—I’m always sleeping at 8:30 in the morning! "I have bad news," the doctor said. "You have cancer." Luckily my father, an Army bomb-disposal expert, had conveyed to me the appropriate vocabulary for such situations. "Well, gosh darnit! That’s just highly suboptimal," I said—or words to that effect. "What now?" "Well," she said, "it’s a highly survivable cancer, but we need to remove your thyroid, wait a few weeks, and give you some radioactive iodine to kill any remaining thyroid cells. Then you’re on thyroid hormones for the rest of your life. It’s a good treatment. You won’t need chemo and won’t lose any hair. When she hung up, I seemed to be stuck in the same position as every other patient down through history. People were committing medicine on my person. My sole option was to be "patient" and do as the doctor ordered. I was, in fact, destined to lose some hair—from pulling it out as I dealt with numerous hospital departments and their ineffective administrators. But I am more than a list of symptoms. In real life, I’m an e-business consultant. So, I booted up the ThinkPad, dragged out a Web search utility, and started typing in queries. "Thyroid cancer." "Papillary carcinoma." "Hypothyroidism." "Iodine-131." "Thyroidectomy." "Cancer survival rates." Type. Click. Beep. In 30 minutes, I had 200 promising hits. Then it occurred to me that though there are only 15,000 U.S. thyroid cancer diagnoses a year, some of those people have Web access. Back to the search engine. "Cancer support groups." "Thyroid," "cancer," "mailing list." Bingo! I got half a dozen hits, one pointing me to ThyCa, a list server for folks with thyroid cancer. Off went my e-mail subscription request. In the next eight hours, I received about 25 messages from people with the same problem all over the world. Now I’m part of the ThyCa community. That night, I headed to the local bookstore and found exactly four books on thyroid diseases. The score: digital space, 200-plus sources of information; pulp space, four. For the next four days, I did nothing but eat, sleep, and read the 75 ThyCa list messages I averaged each day. I also read information turned up by various search engines. Then I had one of those Zen moments. You know, a clear moment, like when you notice your kid is a human being. How did people do it? How did anyone get sick in the olden days? In the 1980s? And it came back to me how it was. In the mid-1980s, I was living in Boston, home of some of the world’s best health-care providers, when I noticed a weird growth on my tongue. The doctor didn’t know what it was and decided to hack it out to be safe. A few months later, he called and said he’d serendipitously run into a doctor who’d written the only book (literally) on this tumor-like growth. They recommended additional treatment, involving more tongue-slicing and Percodan ingestion. I was treated correctly because these two guys happened to bump into one another at a party. When the thyroid cancer occurred, I was back in my hometown of Albuquerque, N.M.—not a metropolis filled with shining temples to modern medicine. Physically I was nowhere. But digitally I was everywhere. Within hours of the diagnosis, I returned to my doctor with a list of 50 questions covering every angle from diagnosis to recovery. With her answers in hand, I returned to the Internet, compared my situation with those of hundreds of others in the same boat, and realized I wasn’t all that bad off. When I went through my treatment—big, scary stuff—the information I had gathered was useful at every stage. I had seen step-by-step pictures of the surgery. I knew how to cope with radiation sickness. When I was put on a low-iodine diet for three weeks, I knew which foods did and didn’t have iodine. When I came out of the anesthesia following surgery and found that one of the residents had ordered some drugs for me, I knew that taking them would delay my radiation treatment. So I refused. I refused when the second doctor came in to back up the first doctor. Then again when the third doctor came in. They assured me that, as a layman, I couldn’t really understand the effects of synthetic thyroid hormones on my TG, T3, T4, and TSH levels as they related to radioactive ablation treatments. Then they called my doctor, and she backed me up. I’m still waiting for an apology. The worst part was the four days of radiation, because I was in isolation, without a computer. It was during that time that I fully realized that the primary motivating factor in people’s lives is the overwhelming desire to connect with others. In times of crisis, having someone, anyone, to turn to is a critical factor in one’s ability to cope. With my tongue tumor, I had been in the dark about the nature of the problem, and I had been alone. I was scared. With my cancer—a far nastier proposition—I felt strong because I knew what was going on and I had a community to support me. Does anyone remember the advertising for the movie Alien? "In space no one can hear you scream." Well, in cyberspace, everyone can hear you scream, and a lot of them are screaming the same thing you are. My story doesn’t have an ending, but I do have a parting request: The next time somebody tells you the Internet is a waste of time or isn’t transforming the world, please do me a favor. Ask him if he has ever had cancer.
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