I lost Jane eight years ago. I’m still fighting her cancer. You can help.
The myth of normal
You’d think that after eight years, Jane’s death wouldn’t hurt anymore; that the memory of watching her inject herself every morning and evening with octreotide would have faded; that I wouldn’t have to fight my way out of bed anymore.
I’ll keep riding and walking and making donations…
The truth is something else. You don’t lose a husband or a wife without pain, without creating difficult memories, without taking long term emotional damage. You learn to cope, but you never really get over it—never really get back to normal.
Why I help
People ask me why I’m still fighting to help find answers to NET cancer eight years after any answer we find would do Jane any good. My answer is simple: I don’t want anyone else to go through what Jane went through—and what I continue to go through. I want the day we have cures not only for NET cancer—but for all cancers.
You don’t lose a husband or a wife without pain…
I’m not a rich man. My wife and I were both school teachers. Our students mattered more than our paychecks—more than our retirement. I don’t drive a fancy car or live in a gated community. I can’t write checks the size I’d like to support NET cancer research. I do what I can. I walk the Boston Marathon Jimmy Fund Walk; I ride part of the Pan Mass Challenge; I organize events; I donate what my budget allows.
Any donation will help
I ride with Team Heidi’s Heroes for the PMC. Help me reach my $10,000 goal.
That’s what I ask you to do—what you can. You don’t have to walk 26.2 miles or get on a bike for 50 miles or more. You don’t have to write a check for $10,000 or $1000 or $100. If all you can come up with is $10, that will help more than you can imagine. And if you can do more, I won’t say no. NET cancer isn’t a well-heeled cancer. We still measure what we have for research in millions, not hundreds of millions or billions.
We’ve made some progress. We’re better at diagnosing the disease than we were. We’ve discovered the disease is not as rare as people thought—it’s now the second most prevalent form of gastrointestinal cancer. We’ve found some drugs that slow the course of the disease and ease patients’ symptoms. We have some hopeful leads developed in part thanks to research Walking with Jane has funded through donations like yours.
Help fund a cure
But we still have no cure. Until we do, I’ll keep riding and walking and making donations and writing letters like this one in hopes of inspiring people like you to join us by contributing what they can.
We’ve made some progress.
I really do want to stand at Jane’s grave and tell her, “NET cancer is dead. Your life—and your death—helped kill it.”
Please do what you can to make that happen.
Pax et lux,Harry Proudfoot
Chairman, Walking with Jane
Help us reach our $100,000 goal. I captain the NETwalkers Alliance.
The first $2500 in donations to both my Ride and my Walk will be matched by an anonymous donor, for a total of $5000.
You can click on either the PMC or Jimmy Fund Walk to donate to support either my Ride or my Walk. Every penny from every donation at either goes to support NET cancer research.
I finished my sixth full Marathon Walk in 2018–and my eighth year on the course. This year, I had company on the full course, including Morgan Bozarth and Dan and Julia Hurley. One of my personal goals is to get at least one more full distance Walk in this year.
Thinking about goals
I sit down to review the goals for Walking with Jane and draft new ones every January as part of the planning process. Doing so requires me to look not only at Walking with Jane as an organization but also requires I look at what the other groups involved in the fight against NET cancer are doing.
We need to spread the knowledge…
The reason for that is I see no reason to keep doing something others are doing better. We have limited resources. I try to work on the things that seem to me to have too few resources aimed at them.
Looking around
This year, I decided to zero everything out and start from scratch. I asked myself, “What do we do well—especially better than anyone else? What do we do poorly—or that some other group is doing so well and so broadly that we can step back from it? What are the holes that need to be filled regionally, nationally and internationally? What would I do if I were coming to this work today?”
We have limited resources.
Truth be told, while NET cancer has come a great distance since Jane’s death in 2010, a great deal remains to be done. Yes, patient awareness and support has come a great distance. The Carcinoid Cancer Foundation links patients to doctors and information about the disease at a very high level. Several groups sponsor both regional and national conferences aimed at patients and caregivers that are invaluable resources.
What do we do well?
Research funding has also improved markedly over that period as well. Thanks to generous donations, the NET Research Foundation has begun to establish a broad base of researchers around the world. Globally, there is more research going on than ever before—research we can hope will one day result in cures for NET cancer patients everywhere. In the meantime, that research is turning up ways to improve patient quality of life—as well as lengthening their lives.
Holes to fill
But too many primary care physicians remain ignorant about the disease. Even those who have heard of it often rely on vague memories of the past and know almost nothing about the latest research. It’s not that the resources to educate them don’t exist—it’s that they don’t know where to look.
What do we do poorly?
Nor does the general public have any name recognition for the most part, despite NET cancer being the second most common form of gastrointestinal cancer in the US.
Funding matters
We rely heavily on big donors for both awareness and research funding. Sometimes that money comes with strings attached, pushing researchers in particular directions. That’s not necessarily a bad thing. Drug companies only step up when they see science that is working—and we need to fund translational research that brings the results of basic science to patients who need treatments.
…too many primary care physicians remain ignorant…
But basic research rarely attracts those kinds of donors. We need to develop ways to consistently reach the $25-$1000 donors who together can make an important difference. Walking with Jane has helped spearhead efforts at the Dana-Farber Cancer Institute in that direction. Last year, those efforts created about $700,000—the lion’s share through Boston Marathon Jimmy Fund Walk and Pan Mass Challenge teams.
Lifting more boats
That was all part of a larger campaign to attract both large and small donors to the NET cancer program at DFCI. Over three years, 3-in-3: The Campaign to Cure NET Cancer, raised a total of over $3.6 million.
We need to develop ways to consistently reach the $25-$1000 donors…
We need to spread the knowledge of how to do that to NET cancer centers everywhere. Part of our goals this year is a major push to do just that.
The 2019 Goals
Our 2019 goals are broken down into three areas: Fundraising, Awareness, and Infrastructure. Some of the goals appear in all three areas.
Fundraising Goals
Raise $900,000 in small donations for the Program in NET Cancer at DFCI
Retain and Expand the #curenetcancernow Boston Marathon Jimmy Fund Walk group
Set a group goal of $200,000 and 300 walkers
Set a NETwalkers Alliance team goal of $75,000 and 30 walkers
Set a personal Walk goal of $18,000
Expand the number of riders for NET Cancer of the Pan Mass Challenge
Set a total Ride goal of $700,000
Help the Heidi’s Heroes team reach $250,000
Set a personal ride goal of $12,000
Help NET Walk and PMC teams develop effective fundraising activities
Support efforts by the development office at DFCI to attract and retain large donors
Raise an additional $20,000 to support the Primary Care Physicians NET Cancer Awareness Initiative (Laura Maguire Hoke Fund for NET Cancer Awareness)
Raise $4000 for the Jane Dybowski Scholarship Fund
Help other NET cancer centers develop effective small fundraising events for Walks, Rides, etc.
Write and recruit fundraising articles for the fundraising section of the website and for the Walking with Jane Fundraising group
Awareness Goals
Redesign website in support of the new vision and purposes
Create both and materials for primary care physician conferences
Book and attend primary care physician conferences
Create press releases and pamphlets as needed
Create PSAs as needed
Do 2018 form 990 and post—with past years—to new website
Create a team for Relay for Life
Infrastructure Goals
Complete Walking with Jane office
Update computer system and printer as needed
Design banners for craft fairs and PCP conference booth
Redesign and rewrite website
Maintain and expand social media connections
SnapChat
Others
Create detailed monthly plans for all of the above
I’ve just received unofficial word that Pan Mass Challenge (PMC) riders raised $500,000 for NET cancer research at Dana-Farber this year. The exact amount won’t arrive until the final tally in January.
I’ll be riding–and walking–again next year
Combined with the money from the Jimmy Fund Walk, small donors will have combined their efforts to the tune of over $650,000 for NET cancer research at DFCI this year.
PMC, Walk boost 3-in-3 total
This also, unofficially, puts the total for 3-in-3: The Campaign to Cure NET Cancer at just over $3.5 million. The campaign closes in December and aimed to raise $3 million over three years to support NET cancer research at the Dana-Farber Cancer Institute in Boston.
…small donors will have combined their efforts…
This is a wonderful piece of news for NET Cancer Awareness Month in Massachusetts and for Worldwide NET Cancer Awareness Day on November 10.
Looking forward to next year’s PMC
My personal thanks to all those who rode and walked and to all those who donated. You are truly making a difference in the lives of others.
…a wonderful piece of news…
I’ll be riding–and walking–again next year–Gods willing and the creek don’t rise. We will, with your help, find the answers to NET cancer.
I wish my personal landscape involved more time with my hummingbirds and less time trying to help unravel NET cancer. But the good of the many outweighs the needs of the one, as Spock would say.
Changing landscape of NET cancer
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 can already see the broad outlines forming…
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.
Where I’ve been
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.
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.
I’ve done a lot of thinking about what I’m doing…
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.
Fighting through the emotions
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.
…the bulk of that effort has not fallen on me.
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.
The unchanged landscape
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.
Every patient’s story reminds me of Jane’s…
“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.”
The changing reality
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.
‘…I’ve never heard of before.’
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.
Too many people still hear similar words…
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.
Carving out the future landscape
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.
Jane’s death haunts me…
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.
Whenever the going got tough for her students, Jane challenged them with this quote. Sometimes, I need the same help it gave them.
The Path I walked
We started working on the idea that would become the Walking with Jane seven years ago this month. It was supposed to be nothing more than a Relay for Life team—the kind of thing Jane and I had hoped to do to help others after we retired that June. But Jane was dead—felled two months earlier by a cancer even her doctor had never heard of—and I was barely emerging from the shock of burying the greatest love of my life a month after her 56th birthday.
For seven years I mourned that loss. I can’t explain what happened December 10, 2017. I know I cried a lot. But something was different when I awoke the next day. I still hurt—I expect I always will—but the pain was muted—not as biting, somehow. She does not haunt my every waking moment, my every action, as she had for so long. I felt my brain begin to work again the way it once had.
Help creates knowledge
The time of mourning may have ended, but not the battle against the cancer that destroyed our dreams. That battle continues until it is dead or I can no longer carry on that fight.
And, with your help and support, we have made a difference. The money Walking with Jane has raised has provided the seed money to research NET cancer’s DNA, RNA and the microenvironment that surrounds the tumors. The RNA research may lead to a universal screening test for all cancers—not just NET cancer. We’ve helped create a new NET cancer model that lets scientists understand how the cancer works. And we’ve inspired others to step up in major ways to help fund all those studies and others that may lead to a cure.
Help creates trials
A year ago trials, inspired by some of that research, led to FDA approval of telotristat etiprate. The drug is not a cure, but it does slow the disease down while alleviating symptoms for some patients. Trials for a new therapy, CAR-T, that trains the body’s own immune system to fight NET cancers, will begin later this spring.
But the war against NET cancer is far from over. We’ve gone from diagnosing 10,500 cases a year in the US in 2010 to 22,000 cases a year today. We’ve gone from 105,000 people living with a NET cancer diagnosis in 2010, to over 171,000 today. Last month I read a paper that indicates four percent of all cancers have NET cancer features that complicate curing them.
Help fight any way you can
And the numbers keep growing. NET cancer is now the second most prevalent form of gastrointestinal cancer—trailing only colon cancer. It is not as immediately deadly as colon cancer or pancreatic cancer, but it is a killer, nonetheless—and one without a cure.
This summer, I’ll get on a bike for part of the Pan Mass Challenge. This fall, I’ll take on the Boston Marathon course for the eighth time. With every mile of each, I’ll raise money and awareness for NET cancer research. I know what patients and their families face if we don’t keep moving forward—and I’m determined not to let that happen.
So here I am, hat in hand, asking you for your help. NET cancer killed Jane. Every day, it kills patients I have met on this journey. It won’t let go of me—and I won’t let go of it until one of us is dead.
Please help.
Pax et lux,
Harry
Some other reasons to help
p.s. I lost one of my closest remaining friends to glioblastoma in July of 2017. He was diagnosed in April of 2016. His illness consumed much of the energy I normally devote to this work. In August of last year, I had surgery to remove a basal cell skin cancer from my face. A recovery that was supposed to be measured in days turned into months when the cancer proved much larger than anyone anticipated. I’m fine. They got all of it. But sunscreen is now a daily ritual, even in winter.
p.p.s. Again this year, a generous donor is matching gifts to my Walk, dollar-for-dollar. There’s about $2200 left to claim at this writing for the Marathon Walk and $1280 left for the Pan Mass Challenge. This is an especially good time to help.
