Category Archives: NET Cancer Awareness Day/Month

Goals for WWJ for 2015–Prologue

Marketing NETs, NET Cancer Awareness Day/Month, Uncategorized

An early start

When I was five, my Grandfather sat me down on the back porch of his home in the Ben Avon borough of Pittsburgh and explained the process of setting goals and planning to me. He put it in a child’s terms so I could grasp what a powerful idea it was. Since then, I’ve never been without a set of goals and a set of plans for how to achieve those goals.

‘God helps those who first help themselves.’

That concept got a booster shot when I started working for Sears my last year of high school. It was, then, an organization that took great pride in planning. It was what set them apart from other stores and was a major reason for their success. The day they abandoned their commitment to setting goals and planning is the day they began their fall from the pinnacle of the retail world.

The original goals

On the plane back from Seattle on January 1, 2011, I began thinking about the organization that would eventually become Walking with Jane. My primary goal was to support research into–and raise awareness of–carcinoid/NETs. Jane died because too few doctors had ever heard of this form of cancer. Jane died because we were not spending enough money to fund much in the way of research over the 40 years since the government had decided it was not cost-effective to spend money on it.

…I’ve never been without a set of goals…

But having a goal or two means nothing without a plan for reaching those goals, so I spent that flight thinking about ways an English teacher with minimal medical background could have an impact. I’d written a pamphlet about the disease on my way to Seattle. Now I needed to figure out how to market that–and how to get it into the hands of people who needed the information that pamphlet contained. I needed to figure out how to raise significant amounts of money to fund research. And I needed to know a lot more about carcinoid/NETs and the fight against it than I did.

The power of ignorance

Nearly everything about that initial plan came out of my own ignorance and inexperience. In some respects, that was a bad thing. But in others it was a good thing: I didn’t know what was supposed to be impossible; I knew nothing about the politics of cancer research; I knew none of the things that might have caused me to throw up my hands and walk away in despair. I saw only a set of problems that needed to be solved.

…I needed to know a lot more about carcinoid/NETs…

I took most of the month of December off this past year from my work on carcinoid/NETs. I was physically, mentally and emotionally exhausted. It was not just the effort against carcinoid/NETs. I lost my father to a stroke in August. I lost one of my oldest friends to breast cancer in January. I lost a niece to a long illness in August. Friends lost mothers, fathers, wives, husbands, and children. Friends and family members were diagnosed with a plethora of serious, sometimes fatal, diseases. My father-in-law was diagnosed in November with advanced prostate cancer that has spread to his bones.

A chess lesson

There is a concept in chess called “the overburdened piece.” It is a piece that supports so many other pieces and positions that it becomes the center of attention for both players–often with fatal consequences for the game of the player that piece belongs to. There were simply too many demands on my mental and emotional resources by the end of the year–and something had to give.

I didn’t know what was supposed to be impossible…

I compounded those issues by beginning to write a book on my personal grief process. That meant going back to the beginning and reliving the last months of Jane’s life. I thought I was ready for that. And I am. But the process is proving far more difficult than I anticipated. What I thought I could create a draft of in a month is less than a quarter completed. The writing has been good for me emotionally but has swallowed great chunks of time and psychic energy.

Waking up on Christmas morning

In addition, I decided not to go to Seattle for Christmas this year, given my father-in-law’s fragile health. That meant spending Christmas for the first time since the year before Jane’s death in the house she and I built together 20 years ago. I was ready to reclaim that part of my life, as well–but again, there was a steep emotional price. I woke up in our bed on Christmas morning, had our traditional Christmas morning breakfast, and prepared to welcome her father and sister for Christmas dinner.

I thought I was ready for that.

Four years and 22 days after Jane’s death, carcinoid/NETs still plagues more than 110,000 people in the US who know they have it–and God only knows how many more who have it and don’t know the name of the cancer that is killing them. We have made progress on many fronts: We know more about the disease than we did on the day Jane was diagnosed; we have new drugs approved for use against it; we have more drugs and treatments in trials; and ideas for new treatments waiting in the wings for funding.

Goals ahead

I spent last night thinking about what the goals need to be for the year ahead. I thought about how to reach those goals and what will need to happen for us to make those plans work. Over the next few days, I’ll unveil those plans and ask for your help in making them happen–not just with your money but with your time and effort.

 I was ready to reclaim that part of my life…

I put out a couple of short posts on Twitter and Facebook the last two days. The first was a wish that this would be the year we find a real cure for NET cancer. The second was to remind all of us that it takes more than prayer to make things happen in this world–it takes our sustained effort.

As my grandfather used to remind me with some frequency, “God helps those who first help themselves.”

Gathering a successful Marathon Walk team together requires planning. Without planning--a goal is nothing more than a dream.
Gathering a successful Marathon Walk team together requires planning. Without planning, goals are nothing more than dreams.

Christmas Letter from Walking with Jane

Boston Marathon Jimmy Fund Walk, Grief, Marketing NETs, NET Cancer Awareness Day/Month, NETwalkers Alliance

A too familiar stair

Dante finds himself contemplating life and loss at the beginning of the Divine Comedy. A bit more than two weeks ago, I found myself in a similar space. I had started my own epic, a book on grief that will eventually, if I can bring myself to finish it, help to fund both a cure for the carcinoid/NETs that took my wife from me and an online grief group that has helped me try to survive that loss. I have the first five chapters drafted–but each has exacted a steep emotional price as I journey again through the last months of Jane’s life and the early days following it.

…have a wonderful holiday…

Those emotions have been further exacerbated and complicated by the events of this past year. In August, I lost my father to a massive stroke. He was dead before my plane reached Seattle. Like me, he was a widower. My mother died of Alzheimer’s barely 10 months before Jane’s fight with NET cancer led to her death. My father and I spent that first Christmas–and all the Christmases since–together. We talked about my mother and Jane and about what we both were feeling. It was a peculiar thing to hear my father talk about how he felt. He was not one easily given to sharing his feelings.

A year of death and disease

This Christmas, I will not travel out west for the holidays. My father-in-law was diagnosed just six weeks ago with prostate cancer that has already metastasized to his bones. He will return home on Christmas Eve from a month in rehab and treatment. I cannot leave him and his surviving daughter to face this Christmas–perhaps his last–alone. My brothers and sisters will have each other this Christmas. My in-laws need me here more than I need to be in the west.

He was dead before my plane reached Seattle.

But I will miss those hours with my father. There would be much for us to mull over. Just days before his death, one of my nieces died from a disease she had fought since her teens. I can find no reason in it. Early in the year, I lost one of my oldest friends to breast cancer. Another lost her mother to Parkinson’s. Three friends lost their father to colon cancer. Another friend’s wife was diagnosed with breast cancer and is in treatment. My cousin spent much of the first half of the year fighting uterine cancer. In fact, not a month has gone by this year without either a cancer diagnosis or a death.

Intimations of mortality

Thirteen days ago was the fourth anniversary of Jane’s death. The lead-in to that date was more difficult than I expected. There were days it felt as though she had just died. Part of that was working on the book. But a major part of it was how empty everything seems without her. I can go to a play, listen to music, watch a film, bake bread–do nearly anything–but there is no Jane to share in the small victories or pleasures of life. It is all dust and ashes in my soul. I am tired.

I will miss those hours with my father.

I am reminded of mortality at every turn. Even my own body reminds me of that, though not so horribly. I have had gum surgery on every quadrant of my mouth this year and face more surgery there in the year ahead. Just weeks before the Boston Marathon Jimmy Fund Walk my right knee, which has often given me twinges, gave me pain serious enough that I cut my distance to 13.1 miles instead of the usual 26.2. I’ve only begun walking on it seriously within the last two weeks and, while it still gives me a twinge once in a while, it is healing nicely. Unfortunately, the months of enforced inactivity have put 12 pounds on that I had hoped I’d said good-bye to permanently.

While much is taken, much remains

But I would not have anyone believe that everything has gone darkly this year. Walking with Jane has begun to gather the momentum necessary for flight at long last. Since April, this website has been viewed over 1000 times a month every month except one–and it came close. And every one of those months has been the best of its kind ever in terms of traffic. In November, we had our first 3000 view month.

I am reminded of mortality at every turn.

In April, our Marathon Walk team combined with Kulke’s Krew to form one large team. When the dust settled in September, Caring for Carcinoid/Walking with Jane, Hank and Anne had 48 walkers, eight of whom achieved Pacesetter status. Total, we raised nearly $70,000 for NET cancer research at the Dana-Farber Cancer Institute. That total put us in the top 20 teams–and eclipsed the total of our separate teams the year before by about $10,000. I personally raised nearly $17,000–a personal best for me, as well, that should put me in the top 20 for individuals.

Raising the bar

Our goals for that event for next year are even bigger–and walk organizers at the Jimmy Fund are doing all they can to help us. They have granted us permission to use the Jimmy Fund Walk logos on a stand-alone Facebook Page–the first of its kind to be allowed to do so–for our renamed NETwalkers Alliance team, and are arranging for us to meet with some of the more successful longterm teams to learn from them what they have done to build and maintain success. We will be the official team of the Program in Neuroendocrine and Carcinoid Tumors at DFCI. Both Drs. Matt Kulke and Jennifer Chan, as well as members of the research and support teams for the program walked with us this year.

That total put us in the top 20 teams…

I was reappointed to the Visiting Committee for Gastrointestinal Cancers at DFCI this year. We heard from former NBC News anchor Tom Brokaw at this year’s dinner. Brokaw was treated for multiple myeloma last year and, while he looks frail still from the treatment, still has that signature voice, as well as the ability to see the larger patterns in world events. He spoke eloquently for about 20 minutes without a script or even notes, weaving his cancer journey into world events and new and old scientific discoveries.

Promising discoveries

We also got a look at the meeting at some truly promising developments both on the general cancer and NET cancer fronts. Two items stood out in particular. The first is the discovery of some markers that may eventually make detecting pancreatic cancer earlier possible. The second was progress in the use of immunotherapy on cancer.

Our goals for that event for next year are even bigger…

The second is of particular importance to NET cancer patients as at least one Phase III trial of immunotherapy is scheduled to start in 2015 for carcinoid/NETs. That trial is funded by the Caring for Carcinoid Foundation, which has launched a million dollar matching program for that effort. If you want to make a contribution to that effort, you can do that here.

Moving the needle

Our Greater Fall River Relay for Life effort continued to grow this year, as well. Our team broke the $9000 barrier for the first time this year. While I have had to step away from the planning committee for the full event because of the increasing demands of our work on NET cancer, we remain committed to helping find cures for all forms of cancer–and for supporting cancer patients as they struggle with the disease.

The second is of particular importance to NET cancer patients…

Our fifth Walking with Jane Scholar was named at Westport High School in June. That scholarship gives a student interested in pursuing a career in either medicine or science education selected by the science department at WHS $1000 every year for four years while they work on their undergraduate degree. We also gave our second and third scholarships at Bridgewater State University, Jane’s alma mater. Those are one year $1000 grants for students selected by the university.

Original vision and current reality

This fall, we received final recognition from the IRS as a 501 (c)(3) charitable organization. That recognition is retroactive to our incorporation in May of 2012. I cannot tell you how pleased I am to have that piece out of the way.

Our fifth Walking with Jane Scholar was named…

But I had a very different vision of how all this was going to work in the spring of 2011. I thought then we would be raising a lot more money directly than we are. Instead, we are inspiring other people with far greater resources to step up and make donations to groups working on this fight other than us. Since Jane’s diagnosis there has been a steady increase in funding for NET cancer. Today, three times as much money is raised and spent on NET cancer as was in 2010. People tell me that we are, in part, responsible for that. I will take them at their word for that.

Moving forward

My vision has become increasingly decentralized and more regional. This fall, I wrote extensively on a marketing strategy for NET cancer so that we can raise not only more money for research but also to raise public awareness about the disease. I hope the model I proposed at the end can be used to increase both those things.

…we are inspiring other people with far greater resources…

Whether it will or not, remains to be seen. But the NET cancer community can rest assured that we will not stop trying to move things forward against this monster while life endures. I remain as determined as ever to be able to stand at my wife’s grave to tell her her disease is dead ands will not kill another human being again.

Final words

But I am also very aware that this is not a fight any of us can win on our own. We’ve had a lot of help the last four years from people all over the country–and I hope we have been equally helpful to them. Thank you to all of you who work in this vineyard. May the year ahead bring us the cure we all seek.

…to be able to stand at my wife’s grave…

And I am also very aware that I need to take periodic breaks if I am going to continue doing what I am doing. While I know I had promised a series on immunotherapy this month, it is increasingly clear that is unlikely to happen before January. I will likely write one more piece before New Year’s, but for the next few days I am going to try to get some rest and spend some time thinking about things other than cancer.

And I heard him exclaim…

I hope all of you have a wonderful holiday, whichever of them you celebrate, and that your new year is filled with new hope, improved health and reduced christmas stress.

Thank you to all of you…

Happy Christmas to all, and to all a good night.

Pax et lux,

Harry Proudfoot

Patients, caregivers, researchers, widows and widowers and children all walked with our team this year.
Patients, caregivers, researchers, widows and widowers and children all walked with our team this year. Merry Christmas to all of you who worked this year to end this scourge.

 

Final thoughts on NET Cancer Month

NET Cancer Awareness Day/Month

Looking back

NET Cancer Awareness Month ends today in Massachusetts and Texas. It is 20 days since Worldwide NET Cancer Awareness Day. I’m not sure how many new people we’ve reached with those events–at least a few, I’m sure. But neither NET Cancer Day nor NET Cancer Month reached a fraction of what Breast Cancer Awareness did in October. Of course, we didn’t really expect to do that.

I can’t end death.

This year, thanks to improved diagnostic techniques and greater awareness, we will diagnose about 15,000 new carcinoid/NETs patients in the US. We will likely lose about 12,000 diagnosed patients again this year. That will leave us, as usual, with somewhere between 100,000 and 120,000 diagnosed patients wrestling with the disease on a day-to-day basis as the year draws to a close.

Where we are

We will end the year every bit as uncertain of how many people are actually living with undiagnosed NET cancer as we were at the beginning of it. All we really know is that there are more cases out there than we know about. We know that many cases of idiopathic right-side heart disease are likely caused by carcinoid/NETs, but how many cases that is remains a murky subject. Equally murky is the number of IBS patients who actually have NETs.

…we didn’t really expect to do that.

Nor do we know how many cases of NET cancer are missed because our diagnostic tools can’t reliably detect the disease. Nor do we know how many cases are missed because many primary care doctors don’t know to look for it–or how to.

Before and after NET Cancer Month

But things are getting better. In 2010, when Jane was diagnosed, there were two trials underway in the US. Jane qualified for neither. They were aimed at pancreaticNETs. Jane’s primary tumor wasn’t there. We had octreotide and its long acting form that might ease her symptoms and slow the growth of her cancer. In retrospect, they were like trying to put out a five alarm fire with a fire extinguisher.

…there are more cases out there than we know about.

Today, we have more than a dozen trials underway in the US–and new ones coming online after the new year. At least one of those new trials will try immunotherapy–an idea I will write about at length in December. Early results from other cancers have provided some spectacular results, especially in pediatric cancers, melanoma, and prostate cancer. Whether those results will be duplicated in carcinoid/NETs patients remains to be seen, but there does seem cause for hope.

Better Diagnostics

Ongoing efforts testing Gallium-68 scans as a diagnostic tool for carcinoid/NETs also seem promising. Neither that nor the weaker but now accepted octreoscan existed when Jane was searching for answers to her ongoing diarrhea and gas. PRRT treatment trials are continuing, with more and more cancer centers able to provide access to that therapy that is widely used in Europe.

But things are getting better.

Research funding remains a critical issue. Neither government nor drug companies are much interested in financing the basic research that treatments spring from. I am not, by any stretch of the imagination, a wealthy man. Jane and I were school teachers–and even by the standards of school teachers, we were not particularly well-paid. But I know how important basic research is to any endeavor.

The personal commitment

Four years ago, I pledged I would personally donate $100,000 to the research effort at the Dana-Farber-Cancer Institute’s Program in Neuroendocrine and Carcinoid Tumors over a five-year period. So far, I have fulfilled $85,000 of that pledge. In addition, I have personally raised another $46,000+ through the Boston Marathon Jimmy Fund Walk over the last four years. This year, our Caring for Carcinoid Walking with Jane, Hank, and Anne team raised over $67,000–bringing our team total for the Marathon Walk in the three years I have served as captain to over $100,000.

Research funding remains a critical issue.

I have to admit to being greedy–greedy for a cure for NET cancer. Five days ago, I set up the team page for our new Jimmy Fund Walk team: NETwalkers Alliance. Our current, published, goal is to raise $80,000 this year. But I, personally, want us to raise nearly as much money next year as a team as our team has raised in the previous three years combined: $100,000. To do that, I’ve managed to convince the Jimmy Fund to let us use their logo on our team Facebook page and set up some meetings with the leaders of one of the more successful PanMass Challenge teams to learn from them how they do what they do.

Piloting the future

The researchers at Dana-Farber need the money. But so do researchers at NET cancer research programs around the country. I hope that what we do with the NETwalkers Alliance can become a pilot for other programs and small foundations working on carcinoid/NETs across the country.

I have to admit to being greedy…

We need to create reliable fundraising vehicles across the country everywhere people are doing reputable research on NET cancer. We need to be as open source about our fundraising techniques as many cancer researchers are becoming about making their research available to other researchers.

Stealing an arrow

Jane gave the last months of her life to helping researchers learn as much as they could from her disease-riddled body. It was a conscious decision. Since her death, I have put my financial, physical, mental and emotional resources into that fight. I will continue to do so until we have both reliable ways to diagnose the disease and a way to cure it. I know what it is like to sit by a loved ones bed as they die, knowing there is nothing you can do but hold her hand. It is the most awful feeling in the world.

The researchers at Dana-Farber need the money.

I can’t end death. But if I can help take an arrow or two from his quiver–especially an arrow that causes such a wasting and painful death–I will do whatever it takes to do so. I hope you will join me in that quest.

What is the price of victory? I don't care, so long as we get there.
What is the price of victory? I don’t care, so long as we get there.