Work for change requires planning

Family work

I don’t understand how families work. That may seem strange coming from the eldest of six children, but it is true, none the less. We all grew up in the same house, had the same mother and father, but we don’t talk much–or even communicate much. For the most part, we exchange cards and letters at Christmas and little else.

The goals, then, were fairly simple…

My youngest brother and I are about as close as we get. We talk on the phone a few times a year. Before Jane’s death, he would visit every few years for a few days. I was not surprised when he said he’d come East for her funeral. He liked Jane. He liked me. When another brother announced he’d come out for the funeral–stunned doesn’t begin to describe it. We’d talked maybe three times in 25 years.

Relationship work

Between them, they convinced me spending time with my family in Seattle after Jane’s death made sense. My father would spend the holidays without my mother for the first time, just as I faced them without Jane. We’d be good company for each other. And facing a week in an empty house would do neither of us any good.

I don’t understand how families work.

My father was in poor health. He was one of those people dialysis doesn’t work on. They’d done a novel procedure a few years before to jump-start one of his kidneys. That had kept him alive. He slept a lot. But we buried a lot of old hatchets as we shared our grief.

Initial NET work

His need to sleep meant I had a lot of time to think over those eight days–a lot of time to do research and write and plan. By the time I landed in Providence on New Year’s Day I’d finished the third draft of “Is it IBS? Or is it NET Cancer,” though it had a different title than it does now. I’d also immersed myself in all the research I could find on the Internet on the disease that had carried Jane off in such ugly fashion. On the plane home, I’d finished devising a plan for going after NET cancer with everything I had.

…we buried a lot of old hatchets…

I based that plan on the realities I perceived. I saw two foundations actively working on the disease. One seemed focussed on patient education, though it also had an interest in funding research. The other seemed focussed on funding research, with a side interest in patient education. Neither seemed to raise much money. Neither was reaching out very well to educate the general population. Neither had sufficient staff to do much more than it was doing. Some of that has changed in the years since. Some hasn’t. Both continue to do good work with limited resources.

Change work

Two other things struck me. The first was the absence of NET cancer–we called it carcinoid cancer then–on the American Cancer Society website. Creating awareness, research or funding would prove difficult if the biggest cancer-fighting organization on the planet did not seem to know this particular cancer existed. They still make no mention of it on their pages, despite years of personal lobbying.

…a plan for going after NET cancer with everything I had.

The second was how little we actually knew or understood at the level of basic science about NET cancer and how it worked. The day before Jane’s death, Jennifer Chan, her oncologist, had told me what they had learned from Jane had doubled knowledge of the disease. I’d found that hard to believe given how little I knew they’d learned. Now I knew Jen’s statement was probably true because we knew virtually nothing to begin with.

Previous work

None of this is intended to belittle the efforts of either of the two NET cancer foundations nor the work of the people working on the disease. Given the slender resources they had to work with, they’d done amazing things. The federal government had spent nothing on NET cancer research from 1968 to 2008. The American Cancer Society had done a little better than that, but not much better. What little money there was came largely from private sources–and there was precious little of that.

Two other things struck me.

To improve funding we had to improve public awareness of the disease first. The “Is it IBS?” pamphlet became the first volley in that effort. Millions of people learn they have IBS every year. But IBS isn’t a real diagnosis, as my own doctor once told me. It is what doctors call any gastrointestinal problem they can’t figure out the real cause of. Giving a thing a name, even if that name is meaningless, makes everyone feel better.

Diagnostic work

Unfortunately, making people feel better isn’t anything like a cure. Sometimes, it causes a patient to stop looking for the real cause of the problem. Sometimes–as it had with Jane–the consequences are deadly. I designed the pamphlet with two purposes in mind. The first was to alert IBS patients to the potential danger of ignoring their symptoms and accepting the inaccurate diagnosis. The second was to raise awareness among both doctors and the general public about the disease.

…they’d done amazing things.

I also had a sneaking suspicion the disease was being badly under-diagnosed. The first oncologist we’d seen locally told us Jane’s case was the first she’d ever seen. Within a week, she had three more cases–and I later learned of at least one more another oncologist in her clinic discovered that week. Either there was something in the local environment causing a pocket of such cases, or the disease was more common than we thought.

Donor work

My reading led me to conclude the latter was more likely the case. Anecdotally, at least, it seemed that whenever doctors saw a case of NET, they found several more cases almost immediately. Those reports covered a broad geographic area, which argued the environmental factors were fairly common or the disease was being missed until something–a patient with the disease–caused the doctors think to order the right testing.

…the consequences are deadly.

Broader awareness, I thought, would likely lead to greater funding, as well. From what I could see, most of the private funding came from large donors. Those donors generally had a stake in the research they were funding: they either had the disease or had someone close to them who did. The loss of a single large donor, given how little we were raising, would prove a significant blow to any research program–or any foundation. If breast cancer research loses a single $100,000 donor, it’s not a big deal given the total we spend on breast cancer research. If NET cancer research loses a single $100,000 donor, it can be a huge blow that potentially eliminates an entire line of research.

Goal work

Creating a large group of smaller donors might create a more reliable stream of revenue for both research and awareness once such group was constructed. I could see that when I looked at where the money was coming from for other better known rare diseases. For example, we diagnosed about a 3300 new cases of cystic fibrosis in 2010, compared to about 10,000 new cases of NET in the same year. Yet the Cystic Fibrosis Foundation raised far more money in small donations that year than was raised in total for NET cancer.

Broader awareness…would likely lead to greater funding

The goals, then, were fairly simple: raise awareness among the general public about NET cancer and raise more money for research. It seemed fairly simple at 40,000 feet on the way home from Seattle. The reality on the ground would prove much more difficult.

The work of raising money and awareness takes me many places. Appearances at craft fairs bring the opportunity not only to raise money but to talk to people about what NET cancer is in a more social setting than a doctor's office.

The work of raising money and awareness takes me many places. Appearances at craft fairs bring the opportunity not only to raise money but to talk to people about what NET cancer is in a more social setting than a doctor’s office.

Posted by walking with jane on November 4, 2017

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