If your plan is to make a donation to Walking with Jane today, please don’t.
We’ve shuttered Walking with Jane for the duration of the pandemic.
When children are hungry, when parents are trying to keep a warm roof over their children’s heads, when there are spouses and children facing unprecedented levels of abuse during times like these, their needs must come first.
Most of you have limited resources to donate to charitable causes. Send your money, and devote your time, to your local food pantry, your local soup kitchen, your local homeless shelter, your local spousal and child abuse prevention centers and shelters.
It’s not that cancer research doesn’t matter.
It does.
But, for me at least, food, clothing and shelter come first–especially for our most vulnerable.
That said, if you have the means to do more and want that more to be on the NET cancer front, let me suggest three organizations worthy of your support.
First is the NETwalkers Alliance Boston Marathon Jimmy Fund Walk team. All the money we raise through that event goes to NET cancer research at the Dana-Farber Cancer Institute in Boston. The program there is headed by Dr. Jennifer Chan, who was Jane’s doctor and has become a good friend over the last ten years.
Second, make a donation in Jane’s memory to the NET Research Foundation. They fund lots of cutting edge research into NET cancer around the world. They are what Walking with Jane aspires to be in terms of funding research.
Or, finally, make a donation in memory of Jane to the Carcinoid Cancer Foundation. They’ve kept the NET cancer fight going for more than 50 years and should be the first stop on any newly diagnosed NET cancer patient’s list of sites to visit. Their education materials are first rate and they maintain a list of the most qualified NET cancer doctors in the US. They are who Walking with Jane aspires to be on the education and awareness front.
But, again, before you do any of that, take care of the hungry, the homeless, and the abused in your neighborhood this year.
Dear friends, Three weeks ago, I decided to take a break from pretty much everything. I needed some time to think about a range of things from Covid-19 to Walking with Jane to Black Lives Matter to NET cancer and beyond.
It is increasingly clear that Covid-19 has scrambled everything on both the NET cancer fundraising and the Walking with Jane fronts. Both the PMC and the Marathon Walk have become virtual events. Most of our usual fundraisers have been shelved by social distancing concerns. As I wrote earlier, the current economic climate makes it difficult for me to ask our usual donors and sponsors for money they may not have or may need to commit elsewhere.
Some of you know I had planned to take 2021 off as a sort of sabbatical year to rest and recharge my batteries. The last ten years have taken an emotional, mental, and physical toll. But I am very much afraid that taking a two-year break would be tantamount to having to start everything from scratch.
So I have decided to make 2020 my year off. I suspended all Walking with Jane activities in March and stopped trying to keep up with the science shortly thereafter as I tried to get my head around Covid-19. I stopped doing daily detailed reading on that late in May because, honestly, it was too depressing.
My plan is to return to Walking with Jane full time on or about March 1, 2021.
This plan will have no effect on my personal donations to Dana-Farber or NET cancer research. I will continue, as well, to match donations to both my PMC ride and Marathon Walk as I have in the past.
I have very mixed emotions about doing this. Working to support NET research has been a major part of my life over the last decade. Much of my social network is made up of others deeply committed to this work—many of whom I did not know when all of this started.
But I am also painfully aware that some of what I have done has enabled me to avoid mourning Jane’s death. Much as doing so truly frightens me, I need to really mourn her at a level I keep resisting. There are tears I need to shed and things I need to find ways to accept. I hope this will provide the time to finally finish doing those things.
Thank you all for your help, your support, and your work over these past years. But most of all, thank you for your patience with me. I’ve not always said or done the right thing for any of you. For those moments—and there have been too many of them—my sincere apologies.
30 Net Facts in 30 Days has taken five moths to pull together. It grew out of discussions with a number of people about one of the central problems facing NET cancer patients: Too few primary care practices even know the name NET cancer, let alone its symptoms.
The day my wife and I heard her diagnosis, the doctor’s opening words were he had “never heard of this form of cancer before.” That was in August of 2010. Most newly diagnosed patients would likely hear similar words today, if their doctor were being fully honest with them. I meet PCPs and NPs with great frequency. I’ve had two dermatologists tell me they’d heard of NET cancer because of a rash that appears in the late phases of the disease. The rest plead ignorance.
Second purpose
But I wanted the campaign to do more than educate medical practitioners. The general public is equally unaware of the disease despite it having more patients–and frequently more diagnoses per year–than other diseases that have become nearly household words. As a result, wherever possible, we’ve tried to stick to everyday language.
Twitter posts have to be short, so most days I’ll post commentary as a separate post on this site to take things a bit further, if you’re interested.
How you can help
A new fact will be added to this post each day for the month of November. Those facts will also be posted on Walking with Jane’s Facebook page and on our Twitter page. Feel free to copy and post each fact as it becomes available on your own social media page.
And please share this information with the medical professionals in your life.
Daily Posts
November 1: The number of new diagnoses of NET cancer in the US is rising faster than other cancers: an over 6-fold increase from 1973 (1.09 per 100 000) to 2012 (6.98 per 100 000). #30NETfactsin30days Commentary
November 2: NET cancers begin in neuroendocrine cells, a type of cell found throughout the body with traits similar to nerve cells and hormone-producing (endocrine) cells. #30NETfactsin30days What are neuroendocrine cells?
November 3: NET cancers commonly start in the gastrointestinal tract (GI) and are the second most prevalent form of GI cancer in the US. While neuroendocrine cancers frequently start in the gastrointestinal tract, they can form almost anywhere, including—but not limited to–the lungs, thymus, testicles, and ovaries. What are incidence and prevalence?
November 4: Neuroendocrine cancers are very diverse. Many low-grade, well-differentiated neuroendocrine tumors are slow growing, but high-grade, poorly-differentiated neuroendocrine carcinomas can be aggressive. #30NETfactsin30days
November 5: NET cancers can produce hormones in life-altering quantities. Some, but not all, neuroendocrine patients have symptoms related to hormone production. Commentary
November 6: Treatment options for neuroendocrine cancers depend on features, including pathology (differentiation status, grade), where and how far it has spread, whether there are symptoms related to hormone secretion. #30NETfactsin30days #NETcancerday #LetstalkaboutNETs
November 7: There may be many undiagnosed cases of NET cancer. Autopsy studies found NET cancer in nearly one percent of the population. That’s potentially 3 million undiagnosed cases in the US alone. #30NETfactsin30days #NETcancerawareness #Letstalkabout NETS #cureNETcancernow (This is the one that keeps me up at night.)
Week Two
November 8: NET cancer patients are often given multiple incorrect diagnoses before being diagnosed. It often takes 5-7 years from first symptoms to diagnosis. Recognizing these symptoms to make an early diagnosis is critical. #30NETfactsin30days #NETcancerawareness #Letstalkabout NETS #cureNETcancernow Commentary
November 9: Many NET cancers are diagnosed at an advanced stage after they have already spread. NET cancers discovered earlier are often discovered incidentally on testing done for something else.
November 10: Symptoms of NET cancer can include flushing, diarrhea, intestinal bloating, sudden mood shifts, high or low blood pressure, heart disease, insomnia… If it’s a symptom of too much of particular hormone, it could be NET cancer. #30NETfactsin30days #NETcancerday #LetstalkaboutNETs #cureNETcancernow Commentary
November 11: Patients with carcinoid syndrome can experience symptoms of flushing and diarrhea related to serotonin production by their tumors. Elevated serotonin can be detected using blood and urine tests (5-HIAA). #30NETfactsin30days #NETcancerday #LetstalkaboutNETs #cureNETcancernow
November 12: Constant diarrhea or 4+ loose stools per day is not normal. It can be a symptom of NET cancer and carcinoid syndrome. #30NETfactsin30days #NETcancerday #LetstalkaboutNETs #cureNETcancernow
November 13: If a woman is having hot flashes, it could be a sign of NET cancer, not menopause.
November 14: NET cancer can cause symptoms including pain, abdominal cramping, or cough that are related to the effects of the tumor on normal organs. Commentary
Week Three
November15: Another common site for NET cancers to start is the pancreas. Pancreatic NETs can also secrete hormones, including insulin, gastrin, glucagon, and others, with life-altering results.
November 16: A persistent cough is not always an allergy. Sometimes it’s a symptom of a NET cancer in the lung.
November 17: Jane’s Birthday–NET cancers may remain small before spreading. The cancers often spread to the liver where they can be numerous and large in size. Commentary
November 18: NET cancers occur nearly equally among men and women. Commentary
November 19: If a NET cancer is discovered early enough, surgery can sometimes offer a cure.
November 20: For many patients with advanced NET cancer, cure may not be possible. But we have some drugs and procedures that can slow growth of disease and reduce tumor load and symptoms to improve quality of life.
November 21: There have been improvements in the survival of patients with advanced neuroendocrine tumors in recent years related to approval of new treatments. (Most treatments for neuroendocrine cancers are relatively new.)
Week Four
November 22: Aretha Franklin and Steve Jobs both died from NET cancer. US President Dwight Eisenhower was discovered to have had a form of NET cancer (paraganglioma) after his death. Commentary
November 23: Elevated levels of serotonin in patients with carcinoid syndrome can affect the valves of the heart, usually causing the valves on the right side of the heart to not work normally. Carcinoid Heart
November 24: NET cancers can affect people of all ages. While it was once believed NET cancers were a disease of those over 50, we have seen increasing numbers of younger patients in recent years—some as young as nine.
November 25: While NET cancer was once considered a rare disease, it may have crossed the line for the legal status of that categorization (fewer than 200,000 patients).
November 26: NET cancer is not like other cancers. When you find one, seek out a neuroendocrine cancer specialist. Carcinoid.org maintains a list.
November 27: Multidisciplinary care–evaluation by specialists from multiple disciplines of medicine–is critical to formulating the best treatment plan for NET cancer patients.
November 28: Finding NET cancer early is a key to a long-term positive prognosis. There is currently no universal screening test for neuroendocrine cancer. It is one of the Holy Grails for researchers.
The last two
November 29: In most cases, we do not know why patients develop NET cancer. In some patients, there is an inherited predisposition to developing neuroendocrine cancers and other endocrine disorders.
November 30: Pheochromocytoma and paraganglioma are rare forms of NET that form in nerve tissue inside (pheochromocytoma) or outside (paraganglioma) the adrenal gland. They can make catecholamine hormones.
I don’t often get involved in awards programs when it comes to cancer stuff. But periodically, someone does something truly extraordinary and I nod my head and say, “Here’s someone who deserves to be rewarded for their efforts.”
So it is with Greta Stifel, whom I have nominated for a WEGO Health Award. Greta conceived, wrote, lobbied for, and ultimately got passed, a law in CT that essentially requires physicians spend some time learning about rare cancers–like NET–as part of their recertification. It took three years out of her life–a life already plagued by Stage 4 NET cancer of the small bowel–precisely the same form of NET cancer Jane had.
That legislation is groundbreaking. She plans to take its to Washington, DC, her health permitting. In the next couple of weeks I’ll be talking with Michael Rodrigues, Paul A. Schmid, and Carole Fiola about introducing similar legislation here in MA next year. I also have some friends in the NH legislature I want to talk to about it. I nominated her for Patient Hero and have endorsed her candidacy. What I’d like you to do is to take a few minutes and do likewise. Just click on the link. The endorsement button is on the right side of the page when you get there.
Do it now, while you’re thinking about it. ThanksHarry ProudfootWalking with Jane
I am not well—physically, mentally or emotionally. For close to two weeks I’ve fought some upper respiratory infection. They tell me it’s viral, not bacterial—but I’m tired of it.
I’m mentally tired. Writing the grief book is taking a mental toll as well as an emotional one. I’m not sleeping well as I churn up the emotions of the last nine years. The lack of sleep makes it harder to call on my mental powers. My ability to stay focussed is diminished.
You try, too.
Emotionally, I haven’t been right for a long time—arguably since Jane’s rapid decline started in October of 2009. It’s hard to watch someone die and be able to do nothing beyond make them comfortable—and not always be able to do that—hard to mourn.
What was yesterday?
Yesterday marked 100 months since Jane’s body died. It was also the fourth birthday of a young girl somewhere in Europe. That body carries Jane’s soul. Sometimes, I can almost see her—almost hear her. Her work begins there. My work continues here. I miss her. Her conscious mind forgets me. I cannot forget her.
I cannot forget her.
My brother left yesterday after a week’s visit. We went to a Bruins game, went to a Red Sox game, talked about the state of the world, talked about angels and demons and the wings I keep cutting off my back that people keep trying to put there. We talked about what we have learned in our very different lives—and what remains for each of us to do. There is mail I need to answer, events I need to plan, work I need to do.
Yesterday, a friend’s body went into the earth, another friend learned he had cancer, another friend mourned the passing of his wife, another friend mourned the passing of her husband, another friend mourned the passing of his mother and made arrangements for her services. I am surrounded by illness and death and pain and suffering. Part of what I do—what I have always tried to do—is ease the suffering of others. I do not always manage that. I am, myself, a wounded soul who does not always say the right words or do the right things. I remind myself I am only human—that I do the best I can. But sometimes I forget.
Lessons from small joys
And there is joy in the world. There are weddings and births and promotions and people falling in love. I see those things and they, too, touch my soul. I see the buds swelling on the trees, the robins building their nests, track the course of the hummingbird migration, and wait on the stirrings of the local orchard bees. The cone flowers have begun their annual eruption, the daffodils are in bloom, and a new generation of perennials slowly grow under lights in the basement.
I remind myself I am only human…
My brother tells me he envies me for my ability to feel those small joys. He says he feels satisfied by the things he does, the things he sees—but never quite experiences the light I get from the day-to-day experiences like sitting on the deck and listening to birdsong or the wind in the trees or the taste of a fresh tomato come straight from the garden. I find a spot of joy even in the planning of a small project—find one sometimes even in a well-executed failure—or even in a poorly executed one.
Lessons from the past
The satirist Art Buchwald asked an older friend after the Kennedy assassination, “Will we ever laugh again?” The friend replied: “We’ll laugh again. But we’ll never be young again.”
And there is joy in the world.
I’ve begun to really understand that quote over the last few years. I’m never going to fully lose the sorrow that arrived with Jane’s death. There are pieces of me that are truly gone forever—other pieces that are changed forever. Experience changes us in so many ways—and none so profoundly as the loss of those we love most deeply.
Lessons from beauty
But beauty remains in the world. Our appreciation of it changes in the light of experience—deepens it in many ways. For a time, we may lose our ability to see it—to experience the joy of it. But it remains patiently—waiting for us to return to our selves and to it.
Will we ever laugh again?
I know what it is to hurt so badly you can’t cry. I know what it is to wander aimlessly from room to room subconsciously looking for someone who is not there—who will never be there again. I know what it is to be on a ladder pruning a bush and find a hummingbird nest—and realize you have no one to share the discovery with. I know what it is to wish for death.
Lessons from patterns in grief
And then, something happens and you smile. You’re embarrassed by that moment in the midst of grief—made guilty by it. But it happens again—a simple, silly moment—and you are surprised by a sudden easing of the tension around your heart. And then you laugh—and somehow you don’t die from it. You dance and your legs don’t fall off.
I know what it is to hurt so badly you can’t cry.
But then—just when you think you’ve turned a corner—you literally turn a corner in the grocery store and the grief hits you like it never left. It engulfs you and drowns you and drives you to your knees.
Lessons from reality
And then you wake up one morning and you aren’t dead. You smile, you laugh, you find pleasure in small moments. And you breathe again—sometimes for weeks or months. Then you are walking down the street and see a beagle in someone’s yard and everything goes to hell again—until it doesn’t.
And then you laugh…
This is how grief works—really. There’s no magic formula. You never really “get over it.” You cope. You enjoy the good days and endure the bad ones. You laugh when you can laugh—and you cry when you cry—and you try not to feel guilty or embarrassed by either one.
And tomorrow…
Today, I feel lousy. I hate being sick. I hate being tired. I hate having a brain that doesn’t focus. I hate feeling depressed and alone.
This is how grief works—really.
Tomorrow will be better—or it won’t. But it will have beauty in it and work in it worth doing. I’ll try to appreciate both no matter how I feel. You try, too.
Please don’t refer to the cancer that killed Aretha Franklin as pancreatic cancer. According to her publicist she died of “pancreatic cancer of the neuroendocrine kind.” That form of cancer is more properly referred to as pancreatic NET or pNET. It is a very different type of cancer than the pancreatic cancer most people know about. Among other differences, pNET can create an over-supply of any of the pancreatic enzymes, with dire digestive consequences.
Two of the top doctors in this field are in the Boston area. Dr. Jennifer Chan is the Director of the Program for Neuroendocrine and Carcinoid Tumors at the Dana-Farber Cancer Institute. Dr. Matthew Kulke, the former head of that program, is now the assistant director of the oncology program at the Boston Medical Center. I suggest you talk to one or both of them.
(There are many other doctors and researchers I could name. The initial audience for this was Boston area media. Feel free, if you share this in other areas, to provide more local experts.)
I lost my wife to another form of NET cancer in 2010. I now chair a small foundation focussed on raising awareness and research funding for all forms of NET cancer. I also currently chair 3-in-3:The Campaign to Cure NET Cancer, which is raising $3 million over three years to fund research at Dana-Farber into NET cancer.
NET cancer is now the second most prevalent form of gastrointestinal cancer in the US in terms of the number of diagnosed patients living with the disease. Only colon cancer has more living patients.
Thank you,
Harry Proudfoot
Chairperson, Walking with Jane, Inc.
Chairperson, 3-in-3: The Campaign to Cure NET Cancer
Feel free to use this letter to contact your own local news media. And feel free to change the experts to ones in your area, as well as your connection to the disease.
August 4-5—Bike Rides from various points and of various distances
I met with Heidi’s Heroes team captain Heidi Fischer yesterday. The design for the team shirts is finished and is really quite striking. And she has some wonderful water bottles for team members. The team has 24 members, as of this morning and has raised $23,300. We could do with more in both categories.
Current fundraising efforts
The team has a fundraiser at Orange Theory Fitness Sunday, 12-1:30, 610 Providence Highway, Dedham. This is an upbeat one-hour workout experience. You set your own fitness goals and work out in the company of peers and under the direction of a coach. Registration donation is $35. To sign up, donate to Team Heidi’s Heroes, and in the memo put “Orange Theory Fitness.” Then email Heidi (fischerheidi@msn.com) so she can add you to the class list. You need to sign up by Friday.
No change in my personal status for this event since last week. Our first direct mail to individuals started going out last week. About 100 letters are in the mail. The next phase of that—the online portion—will go out today or tomorrow—and then about another 100 physical letters by the end of this week. The tin cup letter generally brings in $3-4000—much of which is doubled by an anonymous donor.
I’m working on a recruiting poster for local bike shops and the DFCI clinic this week.
September 23—Various start points and distances along the BAA Marathon course
Much of my energy went into laying the groundwork for this event the last two weeks. I’ve raised $6785 so far and we currently have two members signed up. I’m still working on the details for our next fundraiser at Lyrics in Tiverton, RI on April 30.
Current fundraising efforts
Our first direct mail to individuals started going out last week. About 100 letters are in the mail. The next phase of that—the online portion—will go out today or tomorrow—and then about another 100 physical letters by the end of this week. The tin cup letter generally brings in $3-4000—much of which is doubled by an anonymous donor.
Training for both this and the PMC has not gone very well so far. The weather’s been awful and we have more snow coming in tomorrow.
I’m working on a recruiting poster for local gyms and the DFCI clinic this week.
June 23-24—Bishop Connolly High School, Fall River, MA
We have two official members on the Walking with Jane & John team. Our site will be directly across from the food tent, where we will do stuffs and clam chowder from about 4 p.m. until we run out. We need people to help serve, as well as take a few laps around the track.
Current fundraising efforts
I was at the captains’ meeting for this last week and they have made some changes to the format that I think will make things more friendly for people and teams who have not done the event before—and increase interest for those who have. This is the premier Relay in our part of the world in recent years—and this is their 20th anniversary year.
Money raised goes to general cancer research and patient support services.
We have a wide range of events over the next seven months–culminating in the Boston Marathon Jimmy Fund Walk at the end of September. Most focus on NET cancer, but in keeping with my determination to make even the training walks count, some other things get their innings.
Ongoing/Current
January-February–t-shirt sponsorship campaign. If anyone knows a likely business…
February-early March–semi-annual direct mail campaign
Fundraising events
April Date TBA–Spaghetti dinner at Lyrics Bar & Grill in Tiverton, RI. Maybe a different date. Maybe clam cakes and chowder instead, Still working out the details with the owner. I hope to have that worked out by the middle of next week.
Last week in June or second or third week in July, Miniature Golf tournament at Caddy Shack in Dartmouth, MA. I have to wait for the owner to get back from Florida to firm up the date. Once I have that date, I’ll do a business mailing looking for tournament sponsors.
Late July to mid August–second direct mail campaign.
August 4, Hank Landers Golf Tournament, Bradford Country Club, Haverhill MA. A member of our Walk team runs this in memory of her dad. 1 p.m.-8-9 p.m. Banquet follows tournament.
October 15, Clam Boil at LePage’s Seafood & Grill, Fall River, MA 4-8 p.m.
Various Craft Fairs. I’m setting up my schedule for this later this month. If you have one within three hours of Fall River, send me the details and we’ll talk.
Apparently, the Grange is no longer available for our yard/craft fair. If anyone has thoughts on a new venue…
And we are always looking for new ideas for fundraisers. I’d ideally like to have one every month. Thoughts?
While these three Walks are not cancer related, I do them each year as part of my training–and because I know too many people who have dealt with these issues–or are dealing with them.
Cancer Walks & Rides
June 22-23–Relay for Life of Greater Fall River, Bishop Connolly, Fall River, MA. 3 p.m Friday-10 a.m. Saturday. We will do Stuffies and Chowder from the Food Tent and we will need help to serve that. We will also have people walking the track. The team will have a site on the track, but won’t use it as much more than an area to sit in. If people want to stay overnight, they can set up tents there Thursday night or Friday afternoon.
August 4-5–Pan Mass Challenge. We ride with Heidi’s Heroes. I will do the 50 mile Wellesley-Foxboro-Wellesley loop since I need to be in Haverhill Saturday for the golf tournament. Other members of the team are doing other routes–some on one day, some on the other–and some will try the whole thing over two days. Our team goal is $100,000. Sign-ups for this started in January. There is a substantial discount for signing up before March 1.
September 23–Boston Marathon Jimmy Fund Walk. My current plan is to do the entire route, starting in Hopkinton about 5:30 a.m. We also have people who start at 13.1 in Wellesley, 10K in Newton, and 5K at the Jimmy Fund Building. Our team name is the NETwalkers Alliance, which I captain. We are part of the #cureNETcancernow group, which I also head. Our team goal is $100,000. The group goal is $250,000. Sign-ups for this are supposed to start the first week in March. All routes end in Copley Square and trace the BAA course.
I would certainly love to have some training partners for the preparation involved in all of these events. Right now, I’m just walking, but I’ll be headed for the gym at some point soon–and getting on the bike as soon as the weather seems conducive.
Other bits and pieces
I meet monthly with our Marathon Walk contact and 3-in-3: The campaign to Cure NET Cancer in Boston at the Dana-Farber Cancer Institute. The latter group includes the doctors in the NET cancer program and Hillary Respucci from the development office.
I’m also trying to set up with the City of Boston to do informational leafletting about NET on Boston Common a couple of days this summer.
Clearly, busy times ahead. I hope you’ll join in on one or more of the above efforts.
I have to be honest: There are two things I really hate about the work I do with NET cancer.
The first is reading the daily notices about who has died overnight. I’ve reached a point that I know most of them. I’ve read their posts in support groups, met them at conferences. Every death reminds me that despite the money we’ve raised, despite the real progress we’ve made on understanding the disease, we still have no cure, we still have too few ways to ease patients’ suffering, we still have too few ways to improve both the length and—more importantly—the quality of patients’ lives.
I hate failure
And every death reminds me that I have still failed to keep my promise to Jane that I would one day stand at her grave and tell her NET cancer is dead.
On August 5, I’m putting my 65-year-old body on a bike and peddling 50 miles as part of the Pan Mass Challenge. The money I raise will go to NET cancer research at the Dana-Farber Cancer Institute, one of the leaders in NET cancer research in the years since Jane’s death.
Can you help?
Last week, I donated $1200 to that ride. Someone else ponied up $100—an amount an anonymous donor will match later today. That person will match every donation to my ride—no matter how large or small–up to $2500 total.
If you can donate, I’d appreciate it. If you can share this post, I’d appreciate that, as well.
And if you’d like to join the NET Team for any part of the ride, that would be cool, too.