In the information age when we are first diagnosed with an illness - especially a rare one- we spend hours with our butts in a chair surfing the web for information. The more we read and subject the information to self-interpretation - at times, one of the most lethal weapons our minds have when it comes to medicine - the more addicted we become. It is disheartening and scary to learn more, but you just can't stop.

My first brush with the medical community was with a surgeon at an esteemed Ivy League institution who proclaimed when I asked about operating on my tumors, "Why bother? It's already metastasized." The door shut behind me, literally and figuratively. Would I live to reach the parking lot? This incident caused my Internet research to reach a rather fevered pitch.

It took three months of research, scans, blood tests, scoping and doctor's visits to find a doctor (4 tries) who would operate. Tell me that's not disheartening for a cancer patient. They all say "Wait and See".Those of us who are seasoned veterans of the health care system know that those words can mean "Wait and Die". The phrase seems indigenous to rare cancer patients since unless the doctor is highly specialized, he doesn't have a clue what the next step is. On top of the difficulty of finding a specialist, rare cancers are frequently misdiagnosed, sometimes for years. It's been two and one half years now since my surgery. There is no cure for my cancer (Carcinoid) but it's treated as a chronic disease. When it shows up again, you deal with it. You can read about it on the website Carcinoid Cancer Foundation if you'd like. By the way, carcinoid is one type of neuroendocrine tumor - the same type of cancer Steve Jobs of Apple Computer has. He had a liver transplant recently since it had metastasized to his liver.

I found a psychologist who worked with chronically ill patients who helped me create what I call a coping toolbox. Hopefully, in spite of some missteps, I could now deal with the twists and turns of living with chronic illness. Even if you have strong spousal and family support, I highly recommend seeing a therapist who specializes in chronically ill patients. It's well worth it.

Fast forwarding, I have formed a support group for Carcinoid in Philadelphia, spoken before a group of 500, worked with clinics treating my disease and started a website, barkingzebra.net which donates a portion of its Zebra Room sales to cancer causes.Since then, I have been even more challenged - I have been diagnosed with another cancer and serious heart disease. After a by-pass which interrupted chemo for my second cancer, two of the by-passes failed. It was a spot of really bad luck.

Pull up a chair, I've discovered a great article filled with useful links about how to find quality health information on the Internet that I'd like to share with you.

Am I the only one who never knew about the Beers List? This is a list of potentially inappropriate medications for the elderly. I was a bit put off when I saw some of my medications were on the list. There's always something around the corner.

Today there was a blog in the New York Times about normal body temperature in humans. Finally, someone is questioning (in mass media) whether normal for 6.8 billion people is 98.6 degrees (F). I think not. I think it's a range of degrees. My temperature has dropped since I've aged and normal for me is 97.6. When I have a fever of 99.9 (considered low grade) I really feel lousy. Doctors ignore me.

I look forward to sharing my life with you. You're welcome to share yours.