In dealing with my own grief one of the things I have done is get involved with an online grief group through Hospice of the Valley. Since someone is online there just about 24 hours a day–there are participants from Norway, Greece, New Zealand and Australia–there is virtually no time I can’t find someone to talk to when I need to who understands exactly what it feels like to lose a spouse and wrestle with what goes with that state.

But the group also provides a number of other resources as well, not the least of whom is the widows and widowers’ group moderator, a wonderful woman from Phoenix, AZ who mostly sits on the sidelines but who is not afraid to jump in when the need arises–or when she thinks she can bring something to an individual’s attention.

Last week, shortly after I finished the Marathon Walk, I posted a piece there about the walk and how it had helped me get through another piece of the grieving process. Marty responded with a note about e-Patient Dave–a person with whom, she said, I shared some traits.

I filed her comment away until last night. I was not particularly sleepy, so I went to the two sites she had recommended. The first was a short piece on who he was and what had happened to him. In short, he was diagnosed in 2007 with kidney cancer that had spread to his lungs and several other spots. His prognosis was a life measured in weeks of increasing deterioration. The second site is a 16 minute video presentation–and equally informative.

But Dave is still here. Instead of being a patient patient, he took an active role in learning about his disease. He found an online group of people who had been where he was and learned about treatment options his primary care and local oncologists had never heard of.

He is alive today because he became an active patient. Because he researched like there was no tomorrow–and for him there really was no tomorrow if he did not create it–he quickly became more expert on his disease than the doctors around him.

This is not to fault doctors. They see 6-8 patients an hour eight hours a day, five days a week. The treatment of many of those patients is pretty straight-forward: colds, flus, sinus infections, high cholesterol, high blood pressure, high or low blood sugar. Most doctors spend their days looking at hoofbeats caused by everyday garden variety horses.

They rarely see what they refer to as zebras–diseases so far outside the norm of experience that they may only see one case in a lifetime of practice.

Oncologists have the same problem. They see the major cancers all the time. They need to keep up with the latest treatments of those diseases because that is where they can save the most lives.

And if you think of all the diseases that are out there, just keeping up with the major diseases is pretty close to a full time job even if you are not seeing patients. If you only expect to see one

or two cases of a particular disease over the course of your career you are better off staying current on the ones you see every day.

But if you happen to be a patient with one of those zebras–or a disease that is perceived as a zebra–like NEC–then your survival may depend on how fast you can become an expert on your particular disease.

One of the purposes of this site is to give patients access to the latest information we have on neuroendocrine cancer, neuroendocrine tumors, and carcinoid syndrome.

It is why we posted a link to the Philadelphia conference on neuroendocrine cancer last week and put it at the very top of the Resources page. It is why I will publicize and attend the online brown bag sessions sponsored by Caring for Carcinoid Foundation on OncoLink and post an immediate link to the transcript of those as soon as the transcripts become available.

One of the things Dave talks abut is the importance of online patient/caregiver support groups that can share information that has not yet reached everyone in the medical community. One part of the forum we have set up may eventually evolve into one of those. Right now we are busy trying to keep the spammers out and the forum has no real members. But support groups of that kind are available through all three of the other foundations: CCAN, Caring for Carcinoid, and the Carcinoid Foundation. These links will take you to their support group pages. We will, in the next couple of days, post these direct links on the resources page.

When you are dealing with zebras, sometimes your best resource is not your local doctor but the natives of the Serengeti who know the difference between the hoofbeats of a horse–and the hoofbeats of a zebra.