I wish I could see NET as an interesting puzzle–as a game I could walk away from whenever I want to. Then it would not bother me that people will die from the disease this year and next year and the year after and the year after into the distant future. Then I could be satisfied with the pace of research and our slow grind toward making the disease “manageable” while we wait patiently for a cure.

The NET patients I have met seem a patient lot on the surface. They don’t seem to be overly bothered with experimenting on themselves as they try to find the right dose of black raspberry powder to control their diarrhea. They stoically endure the self-administered injections of octreotide. They don’t whimper or whine when they see what gets spent on other cancers compared with theirs. They know they have a cancer with no cure and no near-term hope of one.

The disease is indolent, they are told. The slow rate of growth means they have life ahead of them, albeit a gradually declining quality of life that will gradually shrink the world around them into the size of a coffin.

NET patience is an illusion

But each of them wants much more than that. I remember listening to one woman this spring talk about the “relief” of being diagnosed with breast cancer after years of fighting NET. Here, at last, was a cancer with a clear path to treatment and a potential cure. Imagine a cancer that makes you glad to learn you have a different form of cancer.

NET cancer hobbles along on its few million dollars a year and the handful of missionary doctors who are intrigued enough by the disease to actually spend their careers doing research on it. Find a cure for breast cancer and you will have a shot at a Nobel Prize. Find a cure for NET and maybe your own mother will take notice.

And yet…

Watch someone die from NET and it will change your life. Watch someone you love die from the disease and every plan you have for the future will shatter.

NET ignorance creates no bliss

And the more you learn about the disease and its history the more hurt and angry you will become. I had seen deaths before Jane’s–some of them truly awful. I remember the first brush with lung cancer. I remember the deep gouges in the oak arms of his chair that were more eloquent than any scream in describing the pain he endured. I remember the days in my mother-in-law’s hospital room as she fought to make her crystalized lungs absorb oxygen until exhaustion finally gave her some measure of peace.

Those diseases had substantive research programs going on. Billions were being spent on both diseases. You could drown in the amount of knowledge we had at the time on either.

NET resources slim

On NET, even two years after Jane’s death, we do not spend even $5 million a year. We still have no reliable way to diagnose the disease. We remain uncertain about how common the disease is. There is so much we do not know that we need to know. But progress toward getting that knowledge–even where we know how to get it–is hamstrung by the small numbers working on it and the miniscule amount of money we have to work with.

I am not patient. I have lost too much already. I want to see the day that others do not lose as I have lost.

So I will write the letters, plan the fundraisers and walk the Marathon Walks. For me, this can never be a game.