NET cancer  and the Wars

My Marathon Walk story is the story of NET cancer. It is a story that begins long before I met Jane. It is a story that begins even before I graduated from high school.

It begins for me with the War in Vietnam and climaxes, though it does not really end, in a hospital bed at Brigham & Women’s Hospital in Boston, Massachusetts.

I know what NET cancer is. I know what it does.

The war in Vietnam was escalating in 1968. We would soon have over 500,000 young men there. They needed guns and ammunition and armor and food to eat and fuel to burn. The government was trying to fight a second war at the time, as well: The War on Poverty. Lyndon Johnson wanted both guns and butter, but he didn’t want to raise taxes in an election year either. So the Democratic Congress and the Democratic White House went looking for things they could cut so they could fund the two wars they had in hand.

NET cancer and cost-benefit analysis

There was a third war going on at the same time: the War on Cancer. It was getting substantial amounts of government money but cancer organizations like the American Cancer Society were supplying money for that fight as well. John Wayne, a major movie star, had survived lung cancer by having a lung removed, but for most people cancer was a death sentence. And researchers were beginning to realize that the War on Cancer was a war on many diseases, not just one. With limited money they were forced to focus on what looked like the “major” cancers: lung cancer, breast cancer, leukemia and colon cancer. Each was easy to detect so they had lots of cases to work on.

The harder ones to detect were usually terminal by the time they figured out they were there. And because they were harder to detect, there appeared to be fewer cases of them anyway.

…death claimed her body and killed her cancer in the same stroke.

And then there were those that were really hard to detect, like NET cancer. Often it had metastasized to the liver before anyone knew it was there. And often liver cancer or heart failure or something else seemed to be the cause of death.

What orphan status means

So when the government needed to trim the budget to fight its other wars, the cancer community offered up those “rare” cancers as the place they would cut their budget. What no one realized was that the end of federal spending would also signal the end of most private spending as well. If the National Cancer Institute was not going to spend money on “rare” cancers, no one else was going to either.

And just like that, NET cancer was an orphan. One small foundation rose up to try to keep funding going from private sources, but it was never enough. The die was cast and lots of people would die as a result.

And just like that, NET cancer was an orphan.

For 40 years no one in the federal bureaucracy thought to give the decision a second look. And when they finally did, in 2008, they came up with the money to fund a conference to ask the leaders in the field what their priorities would be if they actually had money. And that was it.

NET cancer and Jane

My guess is that Jane developed her first tumor within a decade of that 1968 decision. When her disease became symptomatic in 1980, her mother though she was anorexic. Her doctors ran tests and told her she had irritable bowel syndrome because they could not really figure out what was wrong. Ultimately, they told her it was all in her head.

By the time I met her in 1985, her weight had stabilized. She had found ways to cope with the illness. She tried not to eat too much at any one time and never after 5 p.m. Most of the time, that worked. But sometimes it didn’t.

…for most people cancer was a death sentence.

I’ve told the rest of Jane’s story here before: the painful gas, the frequent diarrhea, the insomnia, the night sweats, what we thought was the early onset of menopause. I’ve written, too, about her final months, weeks and days. And I have written about my own struggles in the days since death claimed her body and killed her cancer in the same stroke.

NET cancer and me

In two weeks I will make my second Marathon Walk. I will make it to honor her memory by raising awareness about NET cancer and what it is and what it does. I will raise money to help fund the research that will inch us toward the day we will be able to control this beast.

My Marathon Walk story is the story of NET cancer.

I know what NET cancer is. I know what it does. I have met others who have the disease and those who care for them. I see in their eyes the same look I saw in Jane’s and the same one I see in the mirror in the morning. I want to change that look from one of despair and loss to one of hope–and to one of joy when we find a cure.

Please help us find the resources to end NET cancer.