Not everything I read or view on NET ends up being posted on the resources pages here. Often there are several pieces on the same piece of information. In those cases I pick based on how clearly the information is related. Other times I eliminate a piece because of factual errors. Those are more frequent than I would hope. As someone who was in the journalism business for many years, that kind of thing really bothers me. And I am not about to knowingly spread any kind of misinformation if I can avoid it.

I read about a dozen pieces every day. I probably view a half dozen videos a week. I learn new things about this disease all the time.  Sometimes what I learn makes me smile because we are making progress. Sometimes it makes me angry because if we had just known then what we know now I would not be facing what I am facing.

And sometimes what I read moves me to tears. Those are the stories about the people who are living with NET in any of its many forms. Or who have lost someone after years of struggle.

Last night I watched 60 MInutes. They did a piece on Steve Jobs and interviewed his biographer. He talked about the last conversations he had with Jobs. He talked about how Jobs was determined to beat his cancer–how he talked about what he would be doing in another year.

I heard Jane in what he said. I often hear the same thing in the voices in the stories I read. Patients have so much hope. Some with good cause.

And then there are the stories that make me want to scream: the stories about the patients whose doctors misdiagnose them, then tell them this is a good cancer to have–that surgery will cure them, even when the disease has spread.

The truth is there are a handful of places patients can go that practice the kind of team medicine this disease requires–that have the knowledge about what the latest and best standards of treatment are–that are honest enough to tell patients that there is no cure and that all we can do is slow it down and hope the time we buy by doing that will be enough to reduce it to a chronic and manageable condition by the time they need it to be.

Even that is going to be a complicated bit of business. There probably is not going to be a magic bullet out there to take this thing down. And the more I read the more I understand just how complicated the task is.

But equally, the more I read the more I know how quickly we are moving forward. Despite the absence of money for research, research is being done. The level of altruism I see in the men and women fighting on the front lines of this battle is truly inspiring.

A year ago, Jane and I were looking for a miracle. The miracle we wanted never arrived. But a different miracle did. We met some amazing and caring people. Those people changed our lives in positive ways. I hope we did the same for them.

And I hope our legacy will include having helped in some small way to move the ball forward in this search for a cure for this kind of cancer. I hope that what I write here and what we post here–and the stories our former students are putting together as I write this–will help even a handful of other patients find their way out of the woods of this cancer.

For right now, early detection is the only ting that can mean a cure. But early detection means transforming this from a zebra to a horse wearing stripes in the minds of general pracitioners. As they say elsewhere–“If you don’t suspect it, you can’t detect it.”