Category Archives: Marketing NETs

Tell the world about NET

awareness, Goals, Marketing NETs, NET Cancer Awareness Day/Month
When things get dark, I go for a walk in the woods. It clears my head, but rarely delivers answers.

The frustrations of teaching

I went for a walk in the woods two weeks ago with a good friend. We’d both had a tough week and needed some time in nature to try to put our heads back on straight. She teaches high school kids. A good part of what I do now is teach adults–or try to.

I still don’t know how to do what needs doing.

I find teaching adults far more frustrating than I ever found teaching high school students. Listening to my friend, it became clear that job has become far more difficult–largely because adults with no idea of what goes on in the classroom have increasingly forced their way into day-to-day practice. The paperwork now required would make it impossible for either Jane or I to do what we did.

What we think we know

Adolescents think they know everything. Adults know they know everything. Both groups are wrong. Sometimes teenagers can be reasoned with. Their brains are more fluid–more open to persuasion. They have limited experience and often have discovered how wrong they can be.

I went for a walk in the woods…

Adults… Adults believe their experiences have taught them everything already. They can’t perceive how the very different experiences of others have led them to very different conclusions. Worse, new facts or new evidence don’t seem to change their perspective very much. They believe what they’ve always believed because that’s the way they learned it over the course of their lives.

The problem with adults

Ultimately, both our problems stem from adults and what they’ve done or refused to do–or what they are doing and what they refuse to do. I admit, kids are crazy. But more often than not, adults made them that way. But kids can change fairly quickly and relatively easily with the right help at the right time–except when the adults refuse to let them.

Adults know they know everything.

My problem is I deal almost exclusively with adults. Their beliefs about everything were forged sometimes 40 years ago. Sometimes their beliefs are based on knowledge of that same age–knowledge that no longer is valid. We’ve discovered a lot of things over the course of my lifetime–things that have stood the world on its head.

What we believed vs. what was true

For example, about the time I was born, a computer scientist supposedly said he could not imagine why we would ever need more than about four computers on the entire planet. Others said flying to the moon was impossible–and even if it were, it would not happen in my lifetime. And cancer? We had no answers and never would.

We’ve discovered a lot of things…

Of course all those statements and ideas proved entirely untrue. I have a computer in my phone that is far more powerful than the best computer we had in 1952–and seemingly everyone has one. Cars all have computers in them. Every writer I know uses one nearly every day. Every teacher, too. No scientist could get through the day without one.

Moonshots

We’ve been to the moon and sent two probes beyond the edge of our solar system into interstellar space. We’ve discovered worlds spinning around distant suns and begun to perceive the structure of the universe.

…four computers on the entire planet.

And then there’s cancer. I hear several times a month from people that cancer research is the biggest boondoggle in history. “We’ve spent all this money and we still have no cure? The drug companies and the researchers are covering up the cure so they can make more money.”

Before there were cures

In 1952, childhood cancer was nearly an absolute death sentence. Childhood leukemia absolutely was. Breast cancer? Lung cancer? Get your affairs in order. And many people still think this is the case.

And then there’s cancer.

Sidney Farber wasn’t an oncologist. He was a pathologist at Children’s Hospital in Boston. He had the corpses of all these children arriving on his slab on a seemingly daily basis. It drove him to act. He’d go to parents of terminally ill children and get them to let him try chemicals that killed cancer cells in a test tube. Most did no good. But he kept trying.

The changes we don’t see

Today, 90 percent of children diagnosed with leukemia live, many into adulthood. We have a treatment in trials that seems to work for many childhood glioblastoma cases. I know a large group of women, including my younger sister, who are 20-year or more breast cancer survivors. We have cures for lots of forms of cancer–just not all of them yet. Those cures don’t work on every kind of cancer–don’t work on every cancer they are designed to take down.

Sydney Farber wasn’t an oncologist.

Once or twice a year I get to spend time with physicians and researchers working at the cutting edge of cancer. Sometimes, the news is almost too good to be believed–what’s happening with some cancers and immunotherapy leaves me speechless. Sometimes, the news is worse than I can begin to imagine. Every study, every experiment, every trial, adds a new piece to the puzzle, brings a new piece of evidence to the case. Sometimes those things open new lines of investigation. Sometimes they end up being dead ends.

Learning from failure

But we don’t know where something will lead until we try it. Early rockets blew up on take-off more often than people think who were not there to see it. But every failure led somewhere–taught us something we needed to know. People forget that some of our early Mars missions ended in complete failure. Today, we have rovers traveling that planet finding all kinds of interesting things.

Those cures don’t work on every kind of cancer…

Cancer research works the same way. Farber didn’t give up when his first patients died. He didn’t give up when the second group of patients died–or the third or the fourth… Success grows from failure more often than from immediate success.

What we now know

I keep telling myself that. It’s not helping very much this month. Nine years ago, my wife was dying from a cancer her doctor had never heard of, that few oncologists ever expected to see in their entire careers.

…every failure led somewhere…

Today, we know NET cancer stands second only to colon cancer in terms of patients in treatment for GI cancers. We know it stands as the most common of the rare cancers that make up about 30 percent of all human cancers. We know it stands on the verge of crossing out of the legal definition of a rare disease.

Nothing changed when much changed

But medical schools still don’t talk about it much. It appears on no national medical exam. Virtually no primary care physician or nurse practitioner knows it exists if they haven’t encountered a patient with it–a patient who likely heard the same words Jane did when she was diagnosed: “I’ve never heard of this kind of cancer before.”

I keep telling myself that.

I’ve worked at changing that for close to nine years now. Some things have certainly changed during that time. We have online support groups for patients; two organizations have put out books on the subject to help patients become more knowledgeable about the disease and better advocates for themselves; nationally, we’re raising–and spending– more than 10 times as much money for research as we were in 2010. I don’t pretend I’ve had a lot to do with any of that–much of it I’ve had absolutely no involvement in.

The other awareness

But awareness outside the NET cancer community has not changed at all. Many of us have shouted from the rooftops. Primary care physicians have not heard us. Nurse practitioners have not heard us. Medical curriculum groups have not heard us. The general public has not heard us.

But medical schools still don’t talk about it much…

Until that changes people will continue to be diagnosed with advanced disease we have no way of curing. We’ll only be able to ease their suffering some of the time when the drugs and treatments we have work. We may buy them some time with a better quality of life than they might otherwise have.

Changing ignorance

And there will continue to be patients who are never diagnosed; who will die without even the treatments we have that might help them with their symptoms, might get them to a graduation or a wedding or the birth of a grandchild.

Many of us have shouted from the rooftops.

We need to get those medical schools and nursing schools and medical curriculum designers to listen. They need to know the universe of neuroendocrine cancer exists–that what they think they know about the size of the problem is badly out-of-date–and dangerously wrong.

The walk in the woods calmed my mind but brought me no answers. I still don’t know how to do what needs doing. But I’ll keep trying. I hope you will, too.

My nightmare nights

awareness, Death, Grief, Marketing NETs, NET Cancer Awareness Day/Month
My landscaping nightmare helps me deal with the nightmares that await me in the dark of my bedroom. The project outside reminds me that every nightmare has a solution--but the solution often requires lots of though and lots of work. Equally, it requires thinking about the worst-case scale of the problem.
My landscaping nightmare helps me deal with the nightmares that await me in the dark of my bedroom. The project outside reminds me that every nightmare has a solution–but the solution often requires lots of though and lots of work. Equally, it requires thinking about the worst-case scale of the problem.

What keeps me awake

Three things keep me up at night. The first derives from the empty space beside me where Jane is supposed to be. I’ve tried for years to describe what that is like–how many nights it makes me reluctant to go to bed and deal with that reality.

Jane’s story becomes the norm.

I won’t go into that again here. I’ve written too much about grief, here and elsewhere, over the years. Not much has changed over the eight years, ten months, and 29 days since Jane died. I’ve just gotten better at coping with the pain.

The diagnostic nightmare

The second thing that keeps me up is the reality that too many patients go through too many incorrect diagnoses before learning the cause of their suffering is neuroendocrine cancer. Despite the improvements in awareness and scanning technologies, patients still go through years of shuffling between doctors and multiple diagnoses that tell them they have something else.

…the empty space…

I wonder how many patients die of NET cancer believing they have something else. Jane could have dropped dead in front of her students with a piece of chalk in her hand–and I would have been told she died of heart failure or a stroke. Her students told me later of episodes in her classroom her last year teaching that sound like a stroke–sudden changes in her voice, in her handwriting, moments of confusion…

Why diagnostics matter

The valves in the right side of her heart were dying. The serotonin from the tumors in her liver was not being metabolized. Instead, it was frying her valves into a brittle, fibrotic mass that leaked fluid into her legs and abdomen. We wouldn’t learn about that until September.

…too many incorrect diagnoses…

Her liver was toast–90 percent of it eaten by neuroendocrine tumors. It was a marvel she could walk, let alone climb stairs or teach. And then, she couldn’t.

How many don’t know?

By the time Jane was accurately diagnosed, it was really too late to do much of anything. We tried anyway. Doctors tried to treat the symptoms, tried to decrease the tumor load, tried to repair the damage to her heart, made plans to try to address the liver problem. And we made plans for the years ahead we thought she might find a way to enjoy.

Her liver was toast…

I wonder how many patients die without knowing what they had? How many die without the treatments that might ease their suffering? How many loved ones think they know what killed their wife, husband, mother, father, child–and are wrong? Not, mind, that it makes much difference in most respects: loss is still loss.

Autopsy studies

The number may be bigger than we think because the number of patients is potentially much bigger than we want to think. In February, 2010, eleven months before Jane died, researchers published a paper on the results of an autopsy study.

We tried anyway.

They hadn’t gone in looking for anything in particular. They just wanted to see what was there. They found neuroendocrine tumors in close to one percent of the bodies. I encountered that study only after Jane had died.

Backing up that study

Three years ago, I had lunch at a NET cancer conference with a doctor from a major medical center. He told me one of his colleagues was engaged in a similar study–and finding similar results.

…researchers published a paper...

Slightly less than one percent doesn’t sound like a lot–until you scale it up. The US population is roughly 330 million. One percent of that is 3.3 million. To me, that’s a big number. And it scares me.

The stuff of nightmare

We can’t say with certainty what the number of undiagnosed neuroendocrine cancer cases is. Three million is a worst-case scenario. But it is the stuff of my nightmares.

And it scares me.

Primary care doctor awareness is enormously important. Nurse practitioner awareness is enormously important. ER personnel awareness is enormously important. Catch this cancer early in its progression and surgery can create a cure.

Catch it late, and Jane’s story becomes the norm. It’s a norm that I would wish on no one. And it is too often the case. It, too, is the stuff of my nightmares.

Neuroendocrine cancers: problems and dilemmas

awareness, Boston Marathon Jimmy Fund Walk, Fundraising, Goals, Marketing NETs, NET Cancer Awareness Day/Month
The NETwalkers Alliance raises money through the Boston Marathon Jimmy Fund Walk for neuroendocrine cancer research. Morgan (left) has walked the entire route the last two years with Walking with Jane founder Harry Proudfoot (right) who lost his wife to NET cancer in 2010. Morgan was the last teacher Jane mentored and has been involved with Walking with Jane from the start.
The NETwalkers Alliance raises money through the Boston Marathon Jimmy Fund Walk for neuroendocrine cancer research. Morgan (left) has walked the entire route the last two years with Walking with Jane founder Harry Proudfoot (right) who lost his wife to NET cancer in 2010. Morgan was the last teacher Jane mentored and has been involved with Walking with Jane from the start.

Neuroendocrine cells

All neuroendocrine cancers come from neuroendocrine cells. Neuroendocrine cells are the way the nervous system and the endocrine system communicate and create the hormones and peptides our bodies need to do everything from build muscle to digest food to run away or stand and fight. They are involved in everything our bodies do to survive and thrive.

Lives depend on that attention and awareness.

Neuroendocrine cells are found just about everywhere in the body. As a result, neuroendocrine cancers can appear almost everywhere in the body. On the surface, at least, that makes them different from the ways we think about most cancers. When a cancer occurs in the lungs, we call it lung cancer. When a cancer happens in the pancreas, we call it pancreatic cancer. When we get cancer in the liver, we call it liver cancer.

Matters of body geography

But a neuroendocrine cancer in the lung, pancreas, liver–or anywhere else–is often a very different disease from the “normal” cancers that occur in those organs. They may have very different symptoms. They can’t be discovered using the same tests and scans. They frequently don’t respond to the same chemo and radiation treatments.

…neuroendocrine cancers can appear almost everywhere…

And some, but not all, produce hormones in significant enough quantities to have an impact on body chemistry. Those changes can speed up digestion, slow respiration, speed up heart rate, raise or lower blood pressure, change moods–essentially affect anything a hormone or peptide can affect.

Testing for neuroendocrine

Tests for hormone levels can be difficult to administer, as well as expensive. Until recently, for example, testing for serotonin, a hormone commonly produced by neuroendocrine tumors, involved a patient collecting all of their urine for 24 hours. That urine would then be sent to a lab to be individually analyzed for chemicals related to the breakdown of serotonin. Based on those levels, the lab would then extrapolate how much serotonin was being produced and whether or not that fell into normal ranges.

…an impact on body chemistry.

And no doctor is likely to order tests without better cause than a fishing expedition based on a group of vague symptoms that may or may not be explained better by something else.

More complications

Another complication in diagnosing and treating a neuroendocrine cancer is the very number of possible hormones involved and their impact on an individual patient’s symptoms. High serotonin levels produce very different symptoms from high adrenaline levels. And each may require a different treatment regimen.

Tests…can be difficult to administer…

As if that were not bad enough, neuroendocrine cancers come in at least two very different structural types. NET cancers are low grade, well-differentiated tumors that often grow slowly. That slow growth may be part of the reason traditional radiation and chemo therapies don’t work well on them.

The carcinoma difference

Neuroendocrine carcinomas, on the other hand, can be very aggressive. They are high grade, poorly differentiated structures. Their aggressive nature may make them more open to more traditional-looking therapies. But the success rate is not particularly high.

As if that were not bad enough…

In truth, for both types of neuroendocrine cancer, the only curative therapy we have is surgery. And that only works when the cancers are discovered quite early. Otherwise, our treatments can ease symptoms and/or slow the advance of the disease.

Researching neuroendocrine

Neither neuroendocrine cancer form is well understood. And we simply lack the funds to do enough fundamental research into their biology to create the knowledge that could lead to either early detection or a cure.

…the only curative therapy…

A large chunk of that kind of research funding is created by the NET Research Foundation (NETRF), though many NET cancer centers do raise and spend significant amounts to do that work–amounts that may, together, equal what NETRF supplies. The Neuroendocrine and Carcinoid Tumors Program at the Dana-Farber Cancer Institute, for example, raises over $1 million each year to fund research.

Barriers to diagnosis

Two significant barriers exist in the fight against neuroendocrine cancer. The first is awareness among primary care physicians and nurse practitioners about the disease. The Carcinoid Cancer Foundation uses the phrase, “If you don’t suspect it, you can’t detect it” to underline why physician knowledge and awareness matter. I would go one step further and suggest that doctors can’t suspect what they’ve never heard of. In too many cases, too many doctors and nurse practitioners have never heard of the disease.

…much research funding is created by NETRF

The second barrier is public awareness. Neuroendocrine cancer is the second most prevalent GI cancer in the United States. Only colon cancer has more diagnosed patients. Yet few people outside the neuroendocrine cancer community and their immediate families have ever heard of it.

Raising Awareness

I talk with doctors and nurses in a variety of settings. Even many oncologists have never heard of neuroendocrine cancer. I speak in public settings with some frequency. I am too often greeted by incredulity that such a cancer can have flown so long under the radar.

Two significant barriers exist…

Neuroendocrine cancers need a greater level of awareness and attention from both doctors and the general public. Lives depend on that attention and awareness. The #30NETfactsin30days Campaign is an effort to create that greater awareness.

My last arrow? I hate this dragon

awareness, Goals, Marketing NETs, NET Cancer Awareness Day/Month, Personal statement
I lost Jane nearly nine years ago. I'm still fighting her cancer--but I'm nearly out of arrows.
I lost Jane nearly nine years ago. I’m still fighting her cancer–but I’m down to my last arrow.

The arrow I have

I have to admit, I’m worried. In two days we launch a social media campaign on Facebook and Twitter aimed at PCPs, NPs, medical schools and the general public about NET cancer. It’s the last arrow I have in my quiver and I’m far from sure it’s enough to make this dragon even wince. But it’s the arrow I have, so…

I made a promise.

This campaign has to go viral in ways nothing I’ve ever posted–or written anywhere on anything–has done. It has to reach communities I’ve never figured out how to reach effectively. We’ve worked on it for months–and I’m still tinkering with it today–will likely still be doing so tomorrow.

Hoping for an avalanche

Earlier this year, I described what I’ve spent the last nearly nine years doing as standing on top of a mountain throwing pebbles, hoping to start an avalanche that would wake people up to the reality of neuroendocrine cancers.

It’s the last arrow…

I’ve watched in horror as the numbers of diagnoses and the number of patients has climbed year after year. We stand at the edge of NET cancer losing its rare disease status, yet it remains a disease neither medical professionals nor the public has any real awareness of.

Time’s arrow

It’s been a decade since Jane’s H1N1 flu battle opened the gate to her NET cancer’s closing act. It’s been nine years, two months, and 14 days since we knew what she had. We’re barely seven weeks from the ninth anniversary of her death.

…standing on top of a mountain throwing pebbles…

In that time, I’ve raised some money, inspired some people–thrown lots of pebbles–but NET cancer remains largely unknown and largely underfunded. And I’m down to that last arrow–that last pebble. And I’m afraid it isn’t going to be enough.

Death and failure

I’ve lost track of how many patients I’ve known have died this year. There have been too many. I know more will die before this year ends. Each one tears at my soul–each one reminds me we’ve failed–that I’ve failed to honor the promises I made myself when Jane died: to raise awareness so no one hears what we heard the day her doctor told us what she had–“I’ve never heard of this cancer before;” to create the money that would help to find a cure; to find the money that would make an early diagnosis common rather than an exception.

…down to that last arrow…

I thought all those things would be easy. How could anyone who heard Jane’s story not be moved to help? All I needed to do was write and speak and advocate. These were things I knew how to do–have done all my life.

Competing voices

And I failed. There are hundreds–maybe thousands of diseases our there with the same trouble. No one knows about them except the people who have them. No one cares about them except for those affected by them. A thousand things clamor for attention every day. No one has time for the things that don’t have a direct impact on their lives or the lives of their families.

There have been too many.

Starting Friday, we will try again. Over the course of 30 days, we’ll post our 30 facts and hope they get reposted and read and will do some good. I have a plan for a follow-up project in December and January if this even sort-of works.

And then?

And if it doesn’t…

If it doesn’t…I guess I’ll try to make a new arrow or look around for some loose pebbles somewhere.

…we will try again.

I made a promise.

–Harry Proudfoot,

President, Walking with Jane

Time to change direction and focus

awareness, Goals, Marketing NETs

I restarted this ivy heart shortly after Jane's death. The original plant died while Jane was in the hospital. It sprouted a bit that spring. The change since then is remarkable.
I restarted this ivy heart shortly after Jane’s death. The original plant died while Jane was in the hospital. It sprouted a bit that spring. The change since then is remarkable.

A year of change

My friend John died July 1. August 8, I had minor surgery to remove a basal cell skin cancer from my nose. I fought off a cold in September, another in October, the flu in early November and an intestinal issue last week. This weekend marks the seventh anniversary of Jane’s death. My mind, my body, and my soul are tired. Something needs to change.

I need a real break…

Change has very much been in my mind much of the last year. Too much of what I am doing seems pointless. Much of what isn’t pointless, others do far better than I can do. I’ve always believed one should let other people take over when they’ve proven they can do the job better. In those areas, it’s time I did that.

Change over seven years

We have literally dozens of online and offline support groups for NET cancer. Those groups spread the latest NET cancer treatment information to patients and their lay caregivers quickly and efficiently. Ronny Allen and others have taken on the task of putting the latest knowledge into lay terms. Ronny’s site dwarfs this one in every way that matters. It’s time for me to move on from that piece.

Something needs to change.

The Carcinoid Cancer Foundation has set up a place for patients to tell their stories on its website. Increasingly, patient stories make the local print and broadcast media across the US–and across the world. There is more to do there, but the job is getting done better than I can do it. It’s time for me to move on from that, too, except where patient experiences with specific treatments are concerned.

The change grief creates

When I began this, Jane’s story needed to be told. I’ve told it. I’ve told it from every meaningful angle–likely in more intimate detail than anyone needed or wanted to hear. I have also told the story of my grief to the NET cancer community in far greater detail than most would want to hear.

It’s time for me to move on from that piece.

That grief has driven me to a kind of madness. I live too much in a form of solitary confinement. I spend too many days and nights alone with little more than a keyboard and disembodied voices for company. Even when I go out, I am too aware of being alone in a crowd–even when I am out with friends.

Where Walking with Jane began

When I began this work seven years ago, I saw three things that needed addressing: funding, medical awareness, and public awareness. While we have seen improvement over the last seven years, those remain the three intractable problems that stymy our efforts. We can’t fund research without money. We can’t get better diagnostics without greater medical awareness. We can’t get money in the quantities we need without greater public awareness.

That grief has driven me to a kind of madness.

At some point, I lost track of those three things. When patients asked questions, I got caught up in answering those questions. When patients needed emotional support, I did what I could to answer that need. When caregivers needed an understanding ear to listen to them, I tried to do that.

Unexpected change

I forgot I am one human being. In trying to be all things to all people I could forget the burdens I carried for a time. And I could ignore the larger issues I set out to find answers to that seemed beyond my powers to achieve. At least I could feel I was doing some immediate good.

…funding, medical awareness, and public awareness.

My ego got involved, too. I wrote, day-after-day, for years, for an audience of 25-30 regular readers. They were all people I already knew. I needed to attract a general audience that had not heard of NET cancer before who would be moved to do something by Jane’s story. And I couldn’t do it–I couldn’t create that audience.

Change in audience

Without the patient and caregiver audience, I’m not sure what I would have done. One can only write in a relative vacuum for so long before doubt climbs on board. I have no doubt telling Jane’s story has helped many patients. I have no doubt those stories will continue to prove helpful. But telling that story has done little to reach the outside world with the NET cancer story.

My ego got involved, too.

This website has largely lain dormant over the last year. Some of that had to do with helping care for my friend John. Some of it has had to do with my own health issues–both physical and mental. But a big chunk also has had to do with my own frustration. It seems, sometimes, that everything I put my hand to fails–but the moment someone else picks up that same task, they succeed.

Moments of doubt

And I can’t convince myself that somehow I’ve inspired them. People say that to me with some frequency but I don’t see it. They see a role that needs filling and they fill it. Sometimes, after they are well started, they see something I did or am doing. But the thing that started them had nothing to do with me–just with the need I failed to fill effectively enough to make the difference they make.

This website has largely lain dormant…

The last 7.5 years have been the most difficult of my life. They began with Jane’s NET cancer diagnosis and her doctor’s confession that he knew nothing about the disease. They’ve included rising and dashed hopes, multiple deaths, dozens of projects started but never finished, and more mental and spiritual anguish than I can describe. We’ve seen much change in the NET cancer universe over that time–but not nearly enough. We still have no cure.

The battle continues

I don’t walk away from a fight just because the opponent refuses to go down easily. I don’t give up over my own failures–or anyone else’s–either. But sometimes one needs to consider a change in tactics.

…the need I failed to fill…

The focus of Walking with Jane will remain NET cancer. But a return to first principles–and first goals–seems in order. We need to raise public awareness of the disease for two reasons.

Public awareness focus

First, we know there remain many people out there who have NET cancer and don’t know they have it. They suffer the various vague symptoms and travel from doctor to doctor looking for answers–answers the doctors don’t have because they can’t suspect what they’ve never heard of.

I don’t walk away from a fight…

Second, only by broadening public awareness can we generate the funds we need for the basic research that will open the door to real progress on treatments and potential cures. We can’t continue to rely almost exclusively on funding from donations from wealthier patients and their families for the research we must have. A broader donor base that includes both patients and non-patients will generate more funding than either group alone.

Physician awareness must change

But public awareness is not enough. We also need far better physician awareness than we have. The NET cancer landscape has changed substantially in recent years–but primary care doctors remain largely unaware of the existence of the disease, let alone the changes in diagnostics and treatments.

A broader donor base…

Virtually every day a NET cancer forum patient reports conversations too similar to what Jane heard on the day of her diagnosis. Worse, many doctors who do have knowledge of the disease work from a knowledge-base that is a decade old or more.  That, too, needs to change.

Revamping our approach

Starting almost immediately, then, Walking with Jane will begin reinventing itself. We’ll focus on general physician and public awareness in the coming year, as well as fundraising. We’ll continue trying to support patients with first-person experiences with new treatments. But I’ll write far less about Jane and spend significantly less time monitoring patient support groups–or writing things aimed at those groups, myself.

…public awareness is not enough.

In mid-January, we’ll undertake the first major redesign of this website since its creation in 2011. We’ll create separate tracks for patients, primary care doctors, and the general public. We’ll do more to link patients to other sites that do a better job of addressing their concerns than we can do here. We’ll use our Facebook page in different ways than we do now.

And, in the year ahead, we’ll do more general information leafletting in public spaces, as well as other awareness focussed events for both the general public and physicians.

My own needs

But I’m tired. John’s last days took a lot out of me. Memories of Jane’s last days are tearing me up inside. I hurt physically, mentally, emotionally, and spiritually. I need a real break–or at least to slow down. I have a craft fair I’m committed to and a Facebook Awareness Campaign that runs through the end of December. The awareness campaign is largely already designed–most of that is simple posting and sharing.

Starting almost immediately…

So after December 17, I’m taking some time off. For about a month, with one exception, I’m going to try not to think about NET cancer. I may take a trip, do some writing, take some pictures…or I may just work on some house projects I keep thinking about doing but never get to. A few weeks without structure might make a good change for a man who plans just about everything.

Giving Tuesday:give more than thoughts & prayers

Fundraising, Marketing NETs, NETwalkers Alliance

If you can't attend a NET cancer fundraiser, Giving Tuesday is a good time to support NET cancer research. Thoughts and prayers don't fund a single research project--your donations can.
If you can’t attend a NET cancer fundraiser, Giving Tuesday is a good time to support NET cancer research. Thoughts and prayers don’t fund a single research project–your donations can.

Shopping thoughts

Black Friday, people shopped. Their thoughts were focussed on the bargains to be had on gifts for loved ones. My thoughts, too, drifted to the bargains. I had tools to replace and some lights I wanted that went on sale.

…each of us can make a difference.

Small Business Saturday found people with a different set of shopping thoughts. I support small businesses near me all year in preference to the Big Box Stores and the online giants. But I went out Saturday to order a print for my living room. Later this week, I’ll make a trip to my local upholsterer to get a chair rebuilt Jane and I bought for our first apartment.

Cyber Monday grows every year–largely without me. But I understand the thoughts that drive the day. And I have a small personal stake in that Amazon sends some money our way every few months through the Amazon Smile program.

Giving thoughts

But today is Giving Tuesday–a day to move our thoughts beyond ourselves to the real needs of others. I’ll write a number of checks today–and not all of them will go to NET cancer groups, though that is a place I focus most of the year. There are homeless to house, hungry to feed, children who don’t have parents, students who need books, and a number of other rare diseases I’ve supported for decades.

…Amazon sends some money our way…

That said, though, NET cancer remains my lodestone. I’ve already written and mailed my checks to support the NET cancer program at Dana-Farber through the Walking with Jane Fund. That fund also supports the 3-in-3 Campaign as it heads into its final year. We are closing in on the $3 million goal we set for it. That money has earned us a new lab and greater support from the leadership at Dana-Farber.

NET giving thoughts

Today, I’ll send substantial checks to the Carcinoid Cancer Foundation and the NET Research Foundation. The first group does more for patient outreach and medical education than anyone–a job it has done for decades. The second focusses on funding research on a global scale. Both are worthy of your support.

…NET cancer remains my lodestone.

Historically, Walking with Jane’s focus has been supporting the NET cancer program at DFCI. We don’t yet take credit cards, so if you want to donate to us, you’ll need to print out a form and send us a check. Anything that comes in between now and January 1 will support my Marathon Walk or my PanMass Challenge ride in 2018. Officially, neither of those launches until January, but whatever I raise now for that will be matched up to a total of $7500.

Scholarship thoughts

Walking with Jane also funds five scholarships to students working to become science teachers or enter the medical professions. Each year, we present a four-year, $1000 a year scholarship to a graduating senior at Westport High School. The student is chosen by the science department there. We also present an annual $1000 scholarship to a student at Bridgewater State University, Jane’s alma mater. They have a committee that chooses the recipient.

Both are worthy of your support.

I’d like to do more than that. A $1000 today is not a huge chunk of money. If enough people made enough donations earmarked for scholarships, I’d increase the size of scholarships we give. My own finances are stretched as far as they can go.

Think–and give–regionally

There are a number of other NET cancer foundations working regionally to support NET cancer programs near them. I’m know every regional NCI cancer program that has a NET cancer program in it could do with your support as well. The truth is every NET cancer research program is hungry for the money to fund their research. Things are better than they were 10 years ago, but that doesn’t mean they are good. We still have too little money to fund the research we have to have if we are going to fund a cure. Another good NET cancer foundation to give to is The Healing NET Foundation. They have a $1000 match going today.

I’d like to do more…

Please, wherever you are, do what you can. It’s Giving Tuesday and each of us can make a difference.

Challenge sometimes is just keeping up

awareness, Boston Marathon Jimmy Fund Walk, Fundraising, Marketing NETs, NET Cancer Awareness Day/Month

What this challenge is teaching me

I think I need some help. This challenge has reminded me how difficult–and how undermanned–our fight against NET cancer remains. I write pretty quickly, but each of these posts represents at least three hours of writing time. Then I spend another hour putting in links, break-heads, and pull quotes before posting it to various pages and support groups. And often, before I write, there is research that needs to be done.By the time even one of the shorter pieces is ready for your eyes, it has 4-5 hours of work in it. I’ll spend another hour or two fielding comments and thanking people for sharing pieces every day.

If you’re interested, let me know.

I needed to update this website this month, as well. In reviewing what we have, I realized that most of the information on the other pages here is over a year old. I need to find the time to look at more up-to-date videos and check to see which links to other pages still have value–or still work. And lists of foundations and blogs and cancer centers all need updated as well. Gradually, I’m beginning to understand why most foundations and organizations have at least one person–and often more–doing nothing but social media and website stuff.

The fundraising challenge

But maintaining this website and keeping up a social media presence are not all I have on my plate. Walking with Jane tries to average one fundraiser every month. Most of those require a press release for local media outlets. Most also require I design and print posters and get them up in local businesses. Many events require tickets get designed and printed as well. Money gets counted and taken to the bank. The bookkeeping required even for an organization as small as Walking with Jane, makes me crazy.

I needed to update this website this month…

Then, we do three mailings major mailings a year and three smaller ones. Our holiday mailing works purely to bring people up to speed on what we’ve done over the course of the year. The other two major mailings prospect for individual donations to our Jimmy Fund Walk effort. The smaller ones recruit crafters and others for our annual yard and craft sale–and sponsors for events like our Jimmy Fund Walk t-shirts and our miniature golf tournament. I craft every letter and every envelope gets stuffed by hand. More bookkeeping follows.

Other WWJ challenges

Next, we go prospecting for grants to help fund the awareness piece. Next year, we hope to send out copies of two pamphlets to every primary care doctor in New England about NET cancer. If we can find the funding, I’d like to reach every primary care doctor in the US and Canada. I’d go beyond that if I could find the money and someone to do the translations.

…we do three mailings major mailings a year…

Throw in Form 990, an annual board meeting, several craft fairs, a summer gathering for volunteers, and you begin to see the scope of the challenge on just the Walking with Jane front. But I have other NET cancer irons in the fire.

The Dana-Farber challenge

I also chair 3-in-3:The Campaign to Cure NET Cancer for the Dana-Farber Cancer Institute’s  Program in Neuroendocrine and Carcinoid Tumors. I meet with doctors and staff there once a month to plan and execute the various parts of that effort. That has included designing a presentation aimed at businesses, civic and fraternal organizations. We are also creating brochures and public relations materials. A series of podcasts may happen next year. We also look for other ways to raise awareness of NET cancer and the latest research.

…we go prospecting for grants…

That work also involves serving as group leader for the #cureNETcancernow group and captaining our NETwalkers Alliance team for the Boston Marathon Jimmy Fund Walk. Next year, I will also take on at least part of the Pan-Mass. Challenge as we try to start a Program-focussed team for that biking event. Fortunately,  some overlap exists there since much of the fundraising we do goes to support Walkers on our teams.

The training challenge

Of course the Walking–I do 26.2 miles every year–and now the biking, require year-round training at my age. I do more in the spring and summer than I do in fall and winter, but I try to get some vigorous exercise every day. In the summer, I try to do at least one 20 mile hike a week, leading into the Marathon Walk at the end of September.

I also chair 3-in-3…

I also try to spend some time every week talking individually with NET cancer patients and monitoring the various support groups. I try to read a few NET cancer blogs each week as well. And, of course, I have the scientific papers to wade through.

The life challenge

Meanwhile, I somehow find time to have something that looks like a life. I work on the landscaping, spend time in my garden, read what Jane used to call “mind-candy,” and take some photographs. I like to cook and bake my own bread. And I write things other than NET cancer posts and try to keep up with what is going on in the outside world.

…I do 26.2 miles every year…

So it’s no wonder I always feel like I’m running behind. I’m clearly trying to do too much. And yet, I can’t see any way to drop any of this. It all needs doing and most of the people I know who could help have equally daunting schedules in front of them. We all do what we can.

Can we get a little help here?

Now if you’d like to get involved with any of this stuff, I need whatever help I can get. Some people have written pieces about their experiences with various therapies. Others have sent me their crafts to take on the road to the various craft shows I attend. All the money from those goes to NET cancer research. I have friends who come in to stuff envelopes a couple of times a year.

I’m clearly trying to do too much.

Interested? Let me know.  You can reach me at walkingwithjane@gmail.com. As one of our ministers used to say, “Many hands make light work.”

We try to average one fundraiser every month. That is just one of the challenges involved in ou fight to fund NET cancer research.
We try to average one fundraiser every month. That is just one challenge involved in ou fight to fund NET cancer research.

Awareness creates knowledge and change

awareness, Goals, Marketing NETs, NET Cancer Awareness Day/Month

The emotions of November

I’ve had a mind-shattering kind of weekend. I’ve cursed and shouted and cried, both publicly and privately. I’d like to say I feel much better today, but that would be a lie. I have a tough enough time in November, given all the memories it conjures up. Adding the angst of NET Cancer Awareness Month/Day into the mix only further complicates things.

I sell a piece of my soul for that…

But while moving NET Cancer Awareness to some other part of the calendar would be good for me–and getting it away from the elephant in the room that is October might be good for all of us–it’s not likely to happen. Truth be told, we lose more than 1000 patients to NET cancer every month in the US alone–and diagnose even more. No month or day is a good day when that happens.

Why we need awareness every day

As Ronny Allen argues, “Every Day is NET Cancer Day.” Every day, patients around the world hear some variation on the words, “I’ve never heard of this cancer before.” For new patients and their doctors, the first time they hear “NET cancer” they are launched on a quest for information that raises their awareness–and the awareness of the people around them.

I’ve had a mind-shattering kind of weekend.

But it’s not enough. In fact, I’d argue, that awareness comes too late. The doctors need awareness before they see that first patient. That way they would be more willing to consider the testing that will lead to that diagnosis sooner–or at all. As the people at the Carcinoid Cancer Foundation have said for years, “You can’t detect it if you don’t suspect it.” And you can’t suspect something you’ve never heard of.

Doctors need NET knowledge, too

We have patient conferences where both the newly diagnosed and the long-suffering can find out the latest about treatments and support systems. But we have nothing similar–no real in-service training–for experienced primary care doctors. They can go online, as Jane’s doctor did, and try to make sense of the disease that way. But by the time they have a new NET patient sitting in their office, it is too late.

‘Every Day is NET Cancer Day.’ 

Maybe what we need is a traveling road show/conference about rare diseases aimed at primary care physicians: Six diseases you’ve never heard of in six hours. NET cancer is not, after all, the only disease out there that makes a doctor go, “Hmmmm.”

Awareness in the general population

We need the general population to know about the disease before the first time they encounter someone who has it. They are where the money for research has to come from–whether through donations or government funding. Currently, virtually the only people donating to research are those who know someone who has NET or who has died from it.

Six diseases you’ve never heard of in six hours.

Getting awareness of NET cancer to happen among the general population is hard. It’s why I’ve never turned our Walking with Jane Facebook Page into a private group. I understand the need for a place patients can let their hair down. I’m part of several such groups. But my purpose is somewhat broader than providing emotional and intellectual support for patients. So Walking with Jane exists as a public forum to educate non-patients and non-caregivers so we can create a broader base of support.

Purpose of public pain

Of course, the vast majority of the people who read what I write on NET cancer are patients, caregivers and people who have lost someone close to them to the disease. I know some of what I write is as painful for them to read as it is for me to write. It is a reality none of us wants to think about. And it will remain a reality until we find a way to drive out the demon that is this disease.

…we can create a broader base of support outside our own ranks.

I hope, in showing my pain, I can ease the paths of many who are patients. Despite my depressive tone, I want everyone to know that I am making progress toward dealing with the most horrible loss a spouse can experience. I want both patients and caregivers to know there is hope, as well as sadness, on this path.

Engendering compassion

And I want those who have no experience with NET cancer–or any other rare or fatal disease–to gain some understanding of what it means to face a disease without a cure. I want people to understand what it is to be a widow, widower, or orphan who has had to walk someone to the end of life too young. I want people to understand the emotional cost of such a loss. I want them to know what it does to change your view of the world and the people in it.

It is a reality none of us wants to think about…

As my Grandfather used to say: “Intelligence is learning from your own experiences; wisdom is learning from the experiences of others.” I hope, in addition, my posts will encourage some compassion to take root in the hearts of those fortunate enough not to be where too many of us are. I sell a piece of my soul for that every time I write something.

People talk about the beauty of a blue sky. But awareness of what clouds do can change our perspective on everything.
People talk about the beauty of a blue sky. But awareness of what clouds do can change our perspective on everything.

 

Getting noticed: Marketing NET cancer

awareness, Goals, Marketing NETs

Have you noticed?

We diagnose roughly four times as many cases of NET cancer as we do cystic fibrosis in the US each year. But cystic fibrosis gets noticed. We diagnose roughly four times as many cases of NET cancer as we do MS. But seemingly every county has an MS Walk. We diagnose roughly two-thirds as many cases of ALS as we do of NET cancer each year, but ALS inspired the ice bucket challenge.

…we haven’t had a breakout moment, yet.

All four of these diseases are considered rare, but ask the average person about them and chances are they’ll have heard of three of those diseases. The odd man out is NET cancer–even though it affects more people than any of the other three.

Getting noticed harder than it looks

I’m frustrated by that fact. I’ve written on NET cancer for five years. I’ve gotten reporters and patients and caregivers to write about it. I’ve made videos and PSAs and talked on the radio about it. And when someone is diagnosed with the disease, Walking with Jane is a place new patients often find themselves. But none of those efforts–here or elsewhere–has created more than a tiny ripple outside the NET cancer community.

The odd man out is NET cancer…

I can only imagine the frustration of the people at the NET Research Foundation, who’ve been at this for more than a decade. Nor can I even begin to imagine the frustration of the people at the Carcinoid Cancer Foundation who’ve worked for nearly 50 years to raise awareness of NET cancer.

Who gets noticed?

What does it take to get noticed? A child with a cute story helps–at least it did with cystic fibrosis. The kid heard the name of the disease and turned it into 65 roses. That’s probably not going to help us, sincere have very few patients diagnosed before their 20s.

A celebrity who publicly acknowledges having the disease also seems like a winning strategy. ALS had Lou Gehrig–though the Pride of the Yankees is long dead. Steve Jobs could have filled that role for NET cancer. It didn’t happen–and likely won’t.

Marketing who we are

But MS has gotten there with neither a celebrity nor a cute kid. They’ve built their identity one piece at a time. It would seem that’s what we will need to do.

Our 3-in-3 group gathered today for our monthly meeting. A volunteer with a background in marketing at a large firm joined us. We brought her up to speed on what we’ve done so far. She’s thinking about the marketing problem NET cancer presents.

Why we need to be noticed

We have made progress in recent years. We have online support groups no one imagined 10 years ago. We’ve gotten local TV, radio, and newspaper attention in a number of markets. Students hear about it frequently in med schools. We have several cancer centers with growing NET cancer programs.

But we haven’t had a breakout moment, yet. We need one. We need one so more doctors are aware of NET cancer and think to order the tests we have earlier in the process so we can catch the disease in an earlier, more treatable, phase. We need one that will create a sustained source of income for our researchers. But most of all, we need one for our patients so they can get the treatment and the therapies they need–and deserve.

Every campaign should have a button. This is the button Walking with Jane designed for 3-in-3: The Campaign to Cure NET Cancer. Let's ride this horse to support the research we need to have to find a cure.
Getting noticed: Every campaign should have a button. This is the button Walking with Jane designed for 3-in-3: The Campaign to Cure NET Cancer. Let’s ride this horse to support the research we need to have to find a cure.

Buy a NET cancer cure for everyone

awareness, Fundraising, Marketing NETs, NET Cancer Awareness Day/Month

What would you buy with PowerBall win?

I buy the occasional MegaMillions and PowerBall ticket. I know the odds of my being struck twice by lightning are better than my chance of winning. But it’s not like I’d keep the money for myself–at least not very much of it. I might buy a tiny condo in the city so I wouldn’t have to drive quite so far quite so often.

…what we really need is a March of Dollars.

But I’d really like to buy a cure for several diseases–first and foremost, NET cancer–and that’s where the money would really go. It’s where every spare dime goes now. I’d just like to have a lot more spare dimes.

Leveraging what I have

I’m not wealthy. I live frugally and try to spend wisely when I buy something. I’d rather pay for a good chair and never have to replace it than a cheap one I have to replace every five years. I push my own lawn mower, bake my own bread, raise some of my own food. It all creates money I can spend on the things that matter.

…I’d really like to buy a cure…

And where I can, I increase those donations by leveraging them to create more money. I’m a decent photographer, so I make limited editions of my best work. I frame them and sell them at craft fairs. I take items other zebras and their friends make and take those items with me as well. Every penny that comes in goes to fund NET cancer research.

Other methods I try to use

My friends and I put on dinners and golf tournaments and other events, each of which doubles or triples the initial investment. I write letters and send them to people I’ve never met, hoping they will be moved to make donations to the cause. I give speeches I hope will move people to open their wallets.

I’m not wealthy.

I’m trying to write a book about grief. It isn’t going very well. Last year it left me in such a funk I had to walk away from everything for a while. Reliving the end of Jane’s life and coming to terms with her death is still too painful to deal with in large doses. But when it is done and finds a publisher, half of what it makes goes to NET cancer research. The other half helps a grief group keep going that has helped me get through the roughest parts.

Turning thousands to millions

I put solar panels on my roof last winter. The company that did the work offers me $1000 for each person I get to sign on with them. I think solar is a good idea whether people believe in climate change or not. Burning coal isn’t good for my lungs–or anyone’s. Any bounty I get from them is already pledged to NET cancer research. No one has taken the bait yet…

I write letters and send them to people I’ve never met…

Fourteen months ago, the NET cancer program at the Dana-Farber Cancer Institute asked me to volunteer to chair a major fundraising campaign for NET cancer research there. The goal is to raise $3 million over the course of three years. From the perspective of someone whose annual income never reached $70,000, $3 million feels like a lot of money.

Buy big by buying small

From the perspective, however, of someone who has seen what research costs, it’s a mere starting point–and nowhere near what we really need to raise. There aren’t a lot of people with deep pockets out there interested in NET cancer, so I know an awful lot of it has to be raised a few dollars at a time.

…$3 million feels like a lot of money.

When my grandmother came to Massachusetts for the first time, she insisted we take her to see the USS Constitution, which lives in Boston Harbor. She told us that, as a small girl, she had donated her milk money to restoring the ship. She wanted to see what her investment had bought.

One person at a time

In the late 1950s, I went door-to-door in my neighborhood, collecting dimes from our neighbors for the March of Dimes, FDRs plan for defeating polio. Today, no one would allow an eight-year-old to do such a thing, but it was how we defeated polio.

…a few dollars at a time.

I think of those two events frequently as I write my letters or sit behind a table at a craft fair. Two weeks ago, I spent eight hours raising $75. I had two conversations about NET cancer that raised awareness in four people who had never heard of it before. I handed out another five pamphlets on the disease.

A March of Dollars

It wasn’t much for an eight-hour investment. But it was $75 more than we started with and at least another nine people who heard about NET cancer. Even counting in inflation, it was a lot more than I raised in my eight hours of knocking on doors in 1960.

…it was how we defeated polio.

But what we really need is a March of Dollars. If we could get just $1 from every person in the US, we’d have more than $325 million for NET cancer research. We solved the riddle of polio for less than that a year. Maybe we could buy a NET cancer cure for that.

Mailings are labor intensive but can NET as much as $6000 for a $600 investment. I don't buy what my friends and I can do ourselves.
Mailings are labor intensive but can net as much as $6000 for a $600 investment. I don’t buy what my friends and I can do ourselves.