The landscape of NET cancer has changed enormously over the last eight years. We had no money for research worth talking about. Too many patients and caregivers had few support systems beyond their immediate friends. Online support groups were mostly small and hard to find. People in the US had to fly to Europe to get the single most effective treatment available.

I’ve had little to do with any of those changes beyond wishing for them. Yes, I’ve helped raise or inspire about $4 million in funding for research in that time. I’ve offered some solace and knowledge to a small number of patients and inspired a couple of people to write about their experiences. I’ve tried to lay some groundwork where I could. But what I’ve done and what I wanted to do remain two very different things.

Over the last ten months, I’ve done a lot of thinking about what I’m doing—a lot of thinking about what the NET cancer community has been doing.

Personally, I’m in the last four months of chairing Dana-Farber’s 3-in-3: The Campaign to Cure NET Cancer. The goal of that campaign—$3 million in three years—is within sight–despite what the giving page says. We’ve had big donations and small donations and everything in between. We have multiple Boston Marathon Jimmy Fund Walk teams, a substantial Pan Mass Challenge team and a number of independent riders whose efforts support that cause, and a number of different named funds, all of which support a substantial research program at the Dana-Farber Cancer Institute.

Honestly, though, the bulk of that effort has not fallen on me. I’ve chaired the monthly progress meetings, made some suggestions, led our NETwalkers Alliance team, and given the occasional speech, But the bulk of the effort has fallen on Hillary Repucci and her team in the Jimmy Fund office.

Still, that effort has taken something out of me. I’ve written less and less for the walkingwithjane.org website, written very little on the grief websites I’m part of, written very little on the various NET cancer support websites. My personal writing has entirely withered on the vine—as has much of my personal life. For eight years, NET cancer has dominated my waking hours—and too many of my sleeping hours as well.

It has become harder and harder to do more than read the posts in the NET cancer support groups—emotionally harder and harder to do even that. Every patient’s story reminds me of Jane’s, reminds me that we still don’t have a cure, reminds me that every time I’ve seen something that looked promising it has fallen well short of that promise.

Two weeks ago, I lost another person, who’d become a friend, to this vile disease. Like Jane—like too many others—she was diagnosed far too late—died far too young. Each patient’s story strafes my soul; each death reminds me we have not yet done enough. For all that things are better than they were—they are not yet what any sane person would call good.

Eight years ago next month, Jane and I sat in her primary care physician’s office waiting to learn the results of her biopsy. Jane had a blood clot in her shoulder. As a result, we were getting the results of the test a couple of days early. She would spend that night in the hospital. It would be only the second time in almost 21 years of marriage that we spent the night apart. It would not be the last.

“It’s cancer,” her doctor said. “I don’t know how to tell you this, but it’s a cancer I’ve never heard of before.”

Too many people still hear similar words when they learn they have NET cancer. That piece of the landscape hasn’t changed. Too many patients still have to educate their oncologists about the current treatments for the disease. That piece of the landscape hasn’t changed enough either, for all that it is marginally better than it was eight years ago.

NET cancer is now the second largest form of gastrointestinal cancer in the US in terms of the number of diagnosed patients living with the disease. We now diagnose more than 20,000 new cases every year. Nearly 200,000 people are knowingly living with the disease in this country as I write this. Yet it remains a disease the vast majority of Americans have never heard of. That piece of the landscape hasn’t changed.

And how many people are out there suffering—as Jane did for years—with NET cancer who will never know they had it—whose relatives will be told they died of something else? Too many.

What I want–and why I don’t

I want to stop. I want to sit on my deck and watch the hummingbirds, work on my garden paths, plant flower beds, sit in Jane’s memorial garden and watch the baby bunnies nibble the leaves on the perennials. I want to bake cookies and breads, to write a novel and some poetry, to play chess and learn to knit or sail.

But Pam’s death haunts me; Kevin’s death haunts me; Laura’s death haunts me; Jane’s death haunts me; the lives of all the people I know who live with what each of them went through drive me away from my birds and bunnies, my flowers, paths and trees—drive me away from my kitchen, away from my novels and poems.

Periodically, I take some time away from everything. Last week was supposed to be one of those times. It didn’t happen. The everyday problems of life intervened. It’s not clear when I’ll get a few days away, but I have a bit of a busman’s holiday this weekend between the Landers’ Golf Tournament and the PMC. I have no responsibilities beyond showing up to hit a few golf balls, say a few words, and ride a bike for a few hours. I’ll try to get away for a few days after Labor Day and a few more after Columbus Day.

But come mid-December, I’m taking an extended break from day-to-day fundraising and day-to-day NET cancer issues. Part of that time, I’ll spend relaxing and trying not to think about NET cancer. Some of that time, I’ll spend mourning the losses of the last eight years. And some of that time I’ll spend thinking about how to make the next moves in this long war I married into. I can already see the broad outlines forming at the back of my mind. I’ll start working on those in the coming weeks, even as this chapter draws closer to an end.

—Harry Proudfoot

Chairman, Walking with Jane