The more we know the more we know how little we know.
The further I travel into this land of neuroendocrine tumors and carcinoid syndrome the more I am reminded of that fact. We know much more now than we did 14 months ago when Jane was first diagnosed. I know far more than I did, but so do the doctors and researchers who do this for a living.
But there are many doctors out there who still have not heard of NET. And there are thousands of people out there with this ticking time bomb in them who are being diagnosed with something else because that is more likely than NET. Just because we know more does not mean what we know is getting into the hands of all the people who need it.
Today I got a look at a draft of one of the stories Phil is putting together for the series on NET we are going to make available to news outlets next month. It is a moving piece filled with human emotion and the power of a person who has made the choice to stay positive in the face of cancer. It puts another human face on this disease.
The day before Phil did the interview for that piece, Becky interviewed Dr. Richard Warner, one of the founding fathers of NET research, about his work and what inspired him to get involved with NET. She, too, seemed moved by her experience and told me she started working on the piece on the bus back into New York City from White Plains.
Students at Westport High School are designing t-shirts to remind people who Jane was and what took her away from them. Another student is basing her senior project on NET and Carcinoid Syndrome.
Two weeks ago I met with a young woman Jane and I had in class a decade ago. She is fighting a cancer of her own but is designing a piece of jewelry for Walking with Jane to raise awareness about NET.
And day by day, we piece together more stories about NET, the people who have it, the people who fight it, the new information that emerges.
And gradually we make this cancer real for the larger world. We put faces on the patients and their caregivers. We put faces on the doctors and the researchers. We put faces on the living and the dead.
Because people care less about a faceless disease than they do about the people it affects.
