There is a phrase I would like to see eliminated from conversations about NET: that it is less deadly than other forms of cancer.

The latest media outlet to use this line is the New York Times in a story today on the death of Steve Jobs.  While it is true that someone diagnosed with NET is more likely to be alive five years after diagnosis than those with other forms of cancer, the disease is no less fatal in the long term. There is no cure for any form of NET cancer unless it is detected very early in the process. An operation at that stage may result in a cure if the cancer has not spread into the surrounding tissue.

If it has spread all we can do is try to slow it down. But we cannot stop it. It will progress. The symptoms will gradually move from annoying to crippling to debilitating to deadly. Each stage will take longer, perhaps, than it would were it some other cancer. But the end will most likely not be the quick clean death we all dream of. Instead it will strip away control of the patients bodily functions, strip away pride, strip away dignity.

I lived with Jane’s cancer for nearly a quarter century. She lived with it for 30 years. And for 30 years it crippled her.

On one of our first dates I suggested we have something to eat after the movie. It was an innocent suggestion–something I had done  many times on dates before. And Jane went along with it. But she paid for it the next day. She told me later that any time she ate anything after 4:30 or 5 p.m. there was a substantial chance she would have stomach problems the next day.

We never ate late again after that if we could help it. But even then she would get hit with intense bloating and cramping out of nowhere. Over time those episodes became more and more frequent–and more and more intensely painful.

Over time the other symptoms evolved and became equally debilitating: intense flushing, insomnia, constant diarrhea that eventually became uncontrollable. She tried to fight through them. But eventually they became overwhelming.

I know when her body died. But when exactly did the power of her symptoms kill the person she was? That is a question I can never answer.

Every cancer is deadly. They are just deadly in different ways.

I just sent off the draft of a letter I am writing for the New England Division President of the American Cancer Society for final medical vetting. It has taken since July to work my way that far into the bureaucracy. And he is not the end of that climb. There is more bureaucracy to be scaled before I can actually talk to someone who has the authority to make a decision.

Don’t misunderstand me. I like the guy. He listened patiently to what I had to say at the Relay Summit in September. He called me when

he said he would. He has given NET a sympathetic ear and has encouraged me to reduce the reasons ACS should seriously increase its funding of NET research to writing so that we can carry the fight further up the slope.

But I am getting a first-hand look at the politics involved in cancer funding–and what I am seeing is not pretty.

A friend suggested again this weekend that I need to read The Emperor of All Maladies, a book that came out last year on cancer and the people who are trying to unravel it. He tells me it has an extensive explanation of the politics involved in the process. He tells me that it is an ugly story.

I keep getting whiffs of that ugliness. I encountered it at the Summit–a place I would prefer to think better of. But one of the last presenters started talking about the Relay for Life as a brand–which did not bother me enormously because I understand enough about marketing to know one of the keys to success has to do with how recognizable your cause is to the average person on the street. What bothered me was when she talked about other cancer organizations as competition.

Cancer is a nasty disease. Those of us fighting it need to cooperate with each other. We don’t have time for turf wars, blame games or credit taking. The more we get caught up in those kinds of things the less likely we are to find the answers we have to find in order to accomplish anything substantial.

But the way we fund cancer research leads to exactly those issues. There is a finite amount of money available in any given year. Who gets how much of that money comes down to political decisions based on how much noise a particular group can make on behalf of its interest.

That is how NET ended up on the short end of the federal funding list in 1968. It is why it has remained there ever since. And it is why we have such trouble getting anyone–whether in government or in charitable institutions–to take funding this form of the disease to the next level

So November 10 is an important day for all of us. It is the day we need to make as much noise as possible. We need the outside world to pay some attention–and the only way to do that is to be such a squeaky wheel that we finally get some oil.