Category Archives: Uncategorized

Walk experience different this time

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Shattering our Jimmy Fund Walk records

If you look at our Jimmy Fund Walk thermometer right now, it will read somewhere around $55,500. But the gauge is running behind reality. Reality is closer to $63,500 at the moment.

But the day will come–the day will come.

To call this the financially most successful single-year carcinoid/NETs team in the history of the Jimmy Fund Walk is likely a safe statement at this point. On Sunday, 45 people–we had three virtual walkers–set out from four different starting points–and most finished under their own power. That is–albeit narrowly–also the largest number of walkers of any carcinoid/NETs team I’ve ever been on, I think.

Personal change in Jimmy Fund Walk

The flavor of this walk was very different for me than the previous three. Part of that came from my decision to do 13.1 miles this year rather than the 26.2 because of the knee injury I suffered two weeks before. The 26.2 mile starting line is much quieter and more meditative. Part of it is because most of us are sleep-walking at the start. It’s between 5:30 and 6 a.m. The sun is still below the horizon.

…the gauge is running behind reality.

But I think part of it is the realization of the physical, mental, and emotional challenge that lies before us. For me, at least, I know I am going to be alone for most of the walk. My pace doesn’t fit in for very many people. I am too fast for most of the walkers–and too slow for the younger folks who will run at least part of the distance despite what the rules say. Hopkinton is a very serious place in the time before dawn–and it sets the tone for the day.

Jimmy Fund Walk difference at Wellesley

Wellesley has a very different feel to it. People are awake, for one thing. The atmosphere is lighter–and more festive. It isn’t that the distance is not a challenge–it is. But with  the sun riding up the sky, it does not feel quite so ominous, somehow. People talk more–both before the walk and during it. While I spent most of the day walking alone–as I usually do–I talked to a lot of groups as I went along. When I came across a member of our team–which was frequent–I’d talk with them and check on how they were doing before moving on.

Hopkinton is a very serious place in the time before dawn…

Part of the difference, as well, was that my role was changed by both the starting point and the size of the team. My first year, the team was of a similar size, but I had no responsibility beyond getting myself from Hopkinton to Boston. It was a good thing. I was little more than nine months removed from Jane’s death and had difficulty enough taking care of myself.

Being captain of a big team

The second and third years I was a team captain, but the size of the team was tiny. In 2012, we had fewer than 20 members–and only about 15 actually walked. Two of us started in Hopkinton but parted company about five miles in so she could run some of the distance. That was the case last year, as well, but we had only five people on the course of the seven who registered.

People are awake, for one thing.

Being captain this year was an entirely different experience on the course, although the lead-in was fairly similar. Last year we had no patients on the course. This year we had several. Many of those who were not patients were attempting their first walk of this length. I felt responsible for both their safety and the quality of their experience, in either case.

The Jimmy Fund Walk experience

So I varied my pace, falling back to see how the slower folks were doing, then sprinting–if a walker can be said to sprint–back toward the front to touch base with those at the head of the column. I also spent time on my cell trying to keep tabs on both the people doing the full route and those starting at later points. By the time I crossed the finish line for the third time, I likely had clocked in 20 miles–at least that’s what the blisters on my feet were telling me.

I felt responsible for both their safety and the quality of their experience…

The next Jimmy Fund Walk is a year away. My body willing, I’ll go back to the Hopkinton start both next year and the year after. I promised Jane I’d do the full walk at least five times in her memory. I’ll likely have to change my training routine to do it. I think part of the issue was trying to ramp up the distance too fast–a thing my gum surgeries and my father and niece’s deaths in August made necessary.

One thing hasn’t changed–not yet

But seeing the challenges of the 13.1 mile route was a good thing. Those challenges are different from the 26.2, but equally daunting in ways I did not expect–and cannot yet really explain. My body did not ache as badly at the end of the shorter course, but I was every bit as tired. And it was hard to distinguish much physical or mental difference the day after.

The next Jimmy Fund Walk is a year away.

I stood at Jane’s grave again yesterday, as I have the day after each of these walks. I cried–as I always do. I left her some white mums. The words I want to say to her I still can’t say. Her disease is still out there. It is still killing–34 more people every day. Most days, I know at least one of them–some days two or three. We haven’t killed it yet–so I can’t say to her we have.

But the day will come–the day will come.

We never did manage to get our entire walk team together at one place at one time. This third of the team included representatives of most--though not all--of the contingents.
We never did manage to get our entire walk team together at one place at one time. This third of the team included representatives of most–though not all–of the contingents.

For Jane, on our 25th anniversary

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You haunt my dreams. You haunt my waking hours.
You haunt my life. Each corner turned reveals
A memory floating phantom. Ghosts of times
Of joy assault my heart and sing a dirge
That shatters all my restless nights and sours
Each day’s small bits of light. This sadness squeals
And warps my soul from true. That vision slimes
Both who and what we were beneath its surge.
This blasphemy will kill the work our souls
Were built to yield. So sleep, my dearest love,
And give me rest from memory’s ghosts. The coals
Will blossom, rise again and fly—twin doves
Whose souls still hear the ringing, dancing spheres,
And know their light and love when it appears.
–Harry Proudfoot
I am but a shadow without you, my love.
I am but a shadow without you, my love.

Money matters: $6000 in two days

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48 hours from the finish line

I started working on this year’s Boston Marathon Jimmy Fund Walk campaign the first week in February. In less than 48 hours I will cross the physical finish line for that event in Copley Square. But as I write this, the money finish line is still very much in doubt.

Make a difference. Make it now. 

Our team is about $6000 short of its $60,000 goal. I am about $2500 short of my personal $20,000 goal. I’ve written and mailed the letters, prepared and given the speeches, organized and worked at fundraisers. I’ve encouraged the members of our team and advised them with every tip and strategy I know. They’ve all worked hard, all asked everyone they know to help the cause.

Moving beyond the possible

And we still look likely to come up short. Part of me knows I’ve done everything humanly possible over an insanely difficult period in my personal life these past eight months. I’ve lost my father, a niece, a good friend–wrestled with a knee injury and multiple gum surgeries. Part of me knows I have done everything humanly possible in the 49 months since Jane’s diagnosis–and the 45 months and nine days since her death–to make a difference for those living with carcinoid/NETs.

Our team is about $6000 short of its $60,000 goal.

Part of me knows that the $54,000 we’ve raised so far is $54,000 more than we might otherwise have. Part of me would like to be satisfied with that.

Why that last bit of money matters

But carcinoid/NETs is not one of those major cancers which measures its resources in the billions of dollars. If we are lucky, this year we will have perhaps $7.5-10 million total to work with. But too much of that will come from drug companies to finance drug trials. And too little–perhaps $2 million–will go into the basic research we have to do to figure out how and why this bizarre form of cancer works the way it does.

Part of me knows I have done everything humanly possible…

The money we raise goes to fuel that basic research that neither the government nor the drug companies will pay for. It pays for the equipment, the lab space and the people who do that research. It is money we cannot do without. It is the money that plants the seed from which new and better therapies will grow.

The desperate need

And we desperately need those new therapies. There are 120,000 NET cancer patients in the US who know they have the disease. I read their stories every day. They talk about the diarrhea; they talk about not being able to eat without triggering painful bloating and gas that no drug touches; they talk about the insomnia, the low blood pressure, the trouble breathing. They talk about all the things I watched Jane wrestle with every day of the 21 years, three months and eight days of our marriage.

It is the money that plants the seed…

I watched it kill her–and I see it killing them–killing them by inches every day–destroying the quality of their lives and shrinking their access to the world. A week does not go by that I don’t hear another of them has died. And from personal experience, I know precisely what that death looked like. Most weeks, it’s more than one.

Making a difference

What will $6000 buy? I don’t know. I only know that every dollar counts when you are fighting carcinoid/NETs. I only know that every day counts. I only know that even a single dollar could be the difference between finding a cure and watching more people die the death Jane died.

I watched it kill her–and I see it killing them…

Make a difference. Make it now. Give to our team’s efforts against carcinoid/NETs.

In 48 hours, I'll have crossed the physical finish line for this year's Jimmy Fund Walk. But will we have raised the money we set out to raise? And what are the consequences if we don't?
In 48 hours, I’ll have crossed the physical finish line for this year’s Jimmy Fund Walk. But will we have raised the money we set out to raise? And what are the consequences if we don’t?

Marketing NETs: Image matters–Part 2

Marketing NETs, Uncategorized

(Editor’s Note: This is the second of a series of pieces that will approach the problem of carcinoid/NETs not as a medical problem but as a marketing problem. If we are going to increase funding for the disease, we have to think of it as something other than a medical issue. We need to make it a human issue for the general public. In my next post, I’ll discuss the importance of individual patient stories.)

Image and substance

“Image is everything,” Andre Agassi used to say in an ad for the Canon Rebel camera when he was a well-known tennis player. The phrase used to make Jane and I cringe every time we saw it. And we saw it a lot. Jane loved tennis the way many people love football–and every tennis match we watched played that ad over and over again.

We need an image that will get the larger public to take us seriously.

For us, as teachers, substance always outweighed image. We didn’t care how people looked or dressed or what car they drove. We were concerned with the quality of the person’s mind and ideas, not the image they wanted to present to the world.

Image matters

In marketing, ideas and substance do matter. You can only sell a bad product so long before people catch on and leave. But no matter how good or important your product is, if you don’t project the right image–an image that grabs the public’s imagination and takes them where you want them to go–you won’t have much success either early or late.

For us, as teachers, substance always outweighed image.

For a retailer, that means you go out of business–or at least see your sales slump considerably. In the case of an illness like carcinoid/NETs, it means you don’t have much success in attracting donations. Without donations, basic research doesn’t happen. Without basic research, new treatments don’t get discovered. Without new treatments, people continue to die.

Powerful images

The creation of a strong and positive image–from a marketing standpoint–begins with the visual image associated with the product or service. The Jimmy Fund logo depicts a small boy in a baseball uniform in the act of batting. It calls up the vibrancy of youth, reminds the viewer of the organization’s long history with the Boston Red Sox, and underlines the tragedy of pediatric cancer. The figure is active and determined. While it draws on caricature, there is nothing humorous in its portrayal.

Without donations, basic research doesn’t happen.

The St. Jude Children’s Research Hospital is radically different, but creates a powerful initial image as well. It is dominated by the silhouette of a small girl praying. It reminds us that its founder was fulfilling a promise made to St. Jude for an answered prayer. It underlines for the viewer that these children–often hopeless cases when the hospital was founded–had–and too often still have– little beyond prayer to rely on without our help. It is a serious logo for a serious organization with a serious cause.

The problem with Netty

I like Netty, the zebra caricature that festoons many carcinoid/NETs sites. She’s cute and playful and reminds us of the excuse doctors always have at the ready for failing to find our disease–or anything else rarer than the most frequent cause of the symptoms. But Netty is exactly the wrong logo for an organization trying to raise public awareness of our disease. It lacks seriousness or determination. It turns the disease into a joke–and it is anything but a laughing matter.

The figure is active and determined.

We have enough trouble with people saying to patients, “But you don’t look sick.” Netty exacerbates the problem. She is an inside joke that the outside world doesn’t get the irony of. That cute little zebra is kicking people to death. We  get that. We understand that. But Netty undermines the message we need to be sending to the general public: This is a serious disease with serious consequences.

A sunny image

Caring for Carcinoid has its beautiful sunflower logo. From a graphic design perspective, I can’t find fault with it. And I understand it was a favorite flower of one of the founders. But it doesn’t tell a story to the general public the way the Jimmy Fund and St. Jude logos do. It lacks, at least for me, visual power as well.

That cute little zebra is kicking people to death.

Unlike the zebra, a sunflower is a relatively passive thing. It grows, it flowers, it waits for the bees to come pollinate it. And maybe that’s the point. It is an idea waiting to be born but needs outside actors to bring about that birth. There is at least one very successful organization that uses flowers very successfully: cystic fibrosis–which connects the disease to a small child’s miss-pronunciation of the disease’s name–sixty-five roses. But even they have to tell the story in every mailing they do.

Every image tells a story

The most successful logos tell their story without words–the way a successful photograph does. That’s what I set out to do when I sat down with two graphic artists to design the Walking with Jane logo. We went through dozens of photographs until we found one that was both the essence of who Jane was and what Walking with Jane was designed to do–aggressively go after a solution to carcinoid/NETs.

…it doesn’t tell a story to the general public…

Jane was an active human being. She was also a person of vision and a person who was not uncomfortable pointing out things that others did not see. She was a serious person in pursuit of serious things. I wanted to put a human face on the disease we were going after–but I wanted it to be a serious face–a vital face. I wanted an adult version of what the Jimmy Fund logo did–talk to people on multiple levels at once.

Letting people see themselves

But the logo had to be more than a photograph of Jane. It had to be capable of representing all of those battling the disease–and all those who died of the disease. That meant working to turn the photograph into something at once more abstract and more personal. The image shows, I think, all that we lost as a result of her death–and all that we can gain as a result of the way she lived her life. It is the story of every carcinoid/NETs patient writ large on a mountaintop.

The most successful logos tell their story without words…

People in marketing have told me it is among the strongest images they have seen associated with anything–that it really does tell the story we need it to tell–and tells it eloquently.

The image we need

We need such a logo as the visual identity of the disease we are trying to get people to pay attention to. It needs to portray the seriousness of the disease; it needs to portray the lives it destroys; it needs to portray hope; and it needs to portray leadership. The Walking with Jane logo does all those things–and I am willing to hand it to whatever carcinoid/NETs organizations want to use it. Free.

It is the story of every carcinoid/NETs patient…

But if people don’t want to use it–it is, after all, strongly associated with Walking with Jane–then we need to come up with another logo that does the same job at least as effectively. We need an image that will get the larger public to take us seriously.

 

Walking with Jane's logo was designed to tell multiple stories and project a strong and serious image of what we are trying to do. Every carcinoid/NETs logo for the general public needs to do that same thing.
Walking with Jane’s logo was designed to tell multiple stories and project a strong and serious image of what we are trying to do. Every carcinoid/NETs logo for the general public needs to do that same thing.

Marketing NETs: name games–Part 1

Marketing NETs, Uncategorized

General idea of marketing

I’ve spent three days largely confined to my car as I delivered this year’s Boston Marathon Jimmy Fund Walk t-shirts for our team. I do a lot of thinking and planning under those circumstances and spent some of those hours refining my thoughts about how to make carcinoid/NETs better recognized by the general population. As I said in my last post, I’m not very good at marketing–but I do understand the fundamentals of the business.

…we need to simplify our terminology.

Marketing, in part, is about creating a brand identity that people will relate to and want to be involved with. It is about creating a powerful series of images and experiences that will affect people’s emotions as much–or more–as their minds. The carcinoid/NETs community has not done a particularly good job at this. We need to think about how to get better at it. And there is no harm in looking at what others have done that has caused them to succeed.

Marketing success stories

Both the Jimmy Fund and St. Jude’s Children’s Research Hospital have done a good job of marketing themselves to the public. Show someone either of their logos and people immediately recognize the organization they represent. Both make use of compelling narratives that put a human face–or faces–on cancer. Neither is afraid to take risks in the pursuit of building both funding and their image. Both organizations are constantly trying to stretch beyond what they think they can do.

…creating a brand identity that people will relate to…

We need to think in similar terms. Crass as this may sound, we have to think about how best to sell our disease–how best to promote its existence to a higher level of societal awareness. We need to not only seize every opportunity to tell our stories, we need to cultivate a serious image of our disease.

The branding power of names

It seems to me there are three things we need to work on in the short-term. The first–and most fundamental–is to create a single name for this disease in the public consciousness. I was at a fundraising event this weekend for our Relay for Life team. I was asked at least 100 times (and I am not exaggerating) what the name of the disease was. The lack of a single answer to that question was a problem. When I said carcinoid, people thought I  was talking about carcinoma. When I said NET cancer, some asked where the NET was–while others wanted to know what NET stood for. The moment I said I said neuroendocrine, they assumed I was talking about brain cancer. When I used all the names, they looked confused.

…we have to think about how best to sell our disease…

It’s hard to sell something when it can be easily confused with something else. It is even harder to sell something when it has as many different names as carcinoid/NETs does. ALS is short for a real mouthful of syllables, but say Lou Gehrig’s Disease and people immediately know what you are talking about. Absent a famous name to attach to the disease, a common name that puts a human face on the disease–like the Jimmy Fund did with pediatric cancer–is another way to go.

Confusion results in failure

When I started Walking with Jane, the first thing I wanted to do was put a human face on the disease. I could have gone with something involving carcinoid or NET cancer, but neither term seemed very user-friendly. The terms had no poetry to them–and neither was very human.  Carcinoid is not exactly a word the rolls off the tongue–and NET cancer is not very descriptive in the way that breast cancer or lung cancer is.

It’s hard to sell something when it can be easily confused with something else.

It doesn’t help that we’ve gone through four different names in the last four years: carcinoid, NET cancer, carcinoid/NETs, and now carciNETs. We need to find a name that works. It needs to be simple–and we all have to agree that it is the word we will use with the general public. We may know there are multiple types–and physicians may have different words to distinguish these types–but we need to realize that every time we use multiple words for what is–in the mind of the public–a single disease–we confuse our audience–and confusion is the enemy when it comes to marketing and raising awareness.

Keep it simple

There are multiple forms of lung cancer, multiple forms of breast cancer. But when people think about those diseases they see a monolith, not the variations. Each form of lung and breast cancer has a different medical name, but with the exception of mesothelioma, lay people don’t use those terms nor really distinguish among them.

The terms had no poetry to them...

If we are going to reach the general public, we need to simplify our terminology. How we speak of this cancer among ourselves is one thing. How we speak of it to the general public is something else. We need to understand the complexities because we either have the disease or are caring for someone who does. But the average person does not need that level of knowledge–and will be turned off by it if we make the disease feel too complicated.

(Editor’s Note: This is the first of a series of pieces that will approach the problem of carcinoid/NETs not as a medical problem but as a marketing problem. If we are going to increase funding for the disease, we have to think of it as something other than a medical issue. We need to make it a human issue for the general public. In my next post, I’ll discuss the power of visual imagery and logos.)

The first part of developing a marketing plan for anything is figuring out the image you want to sell. That image starts with the name of the thing you are selling--in our case carcinoid/NETs. It is not a good name for marketing purposes.
The first part of developing a marketing plan for anything is figuring out the image you want to sell. That image starts with the name of the thing you are selling–in our case carcinoid/NETs. It is not a good name for marketing purposes.

Research: How do we increase funding?

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Team tops $50,000–unofficially

Unofficially, the Caring for Carcinoid/Walking with Jane, Hank, and Anne Boston Marathon Jimmy Fund Walk team has now raised more than $50,000 for research into carcinoid/NETs since February. Part of me is thrilled by that number–and part of me is deeply disappointed by it.

…none of us alone has a staff big enough…

Our team now boasts 44 members–and, again, I am both thrilled and disappointed.

Half-full and half-empty

Most readers are now shaking their heads: What more can he want, they will ask? That team is huge compared to most others. They’ve already raised an average of over $1000 per person. And $50,000 is a huge amount of money.

Part of me is thrilled by that number…

And they are right–on all counts. Those numbers put us in the top ten teams in the event in terms of both money raised and team size. I am very pleased with that success. The individuals on the team have worked hard to raise money and recruit walkers. Because we are spread out over a huge area–from New York City to Manchester, NH and from Boston to eastern CT, most of those fundraising and recruiting efforts have been solitary affairs, which makes that success even more incredible.

A good start

But I am far too aware of how far short of the financial needs that Herculean effort falls. A single Phase I trial can run $3 million. On that scale, even $100,000 is a drop in the bucket. Funding for carcinoid/NETs this year will still not amount to a rounding error on what we spend on any one of the “major’ cancers.

…$50,000 is a huge amount of money.

Still, that $50,000 is a lot more than the zero that would be there without our efforts. And it is a really good start toward building the kind of team we need to have to create a cure for this disease. We still have nearly a month–until October 15–to raise money for this year’s walk. So if you haven’t made a donation yet…

Filling the glass

My mind, however, is already thinking about next year–and beyond. I’ve actually been thinking about it for several weeks now, dating back to when I first began designing this year’s Jimmy Fund Walk team t-shirts. Jenaleigh Landers and I had a conversation back in July about the name of our team–which, with the addition of her father’s and Robert Ramsey’s wife’s names, is beginning to get a bit long.

So if you haven’t made a donation yet…

Out of that conversation came the idea for a new name for our team next year: Allies Against CarciNETs. That title headlines this year’s shirt, but it is a concept that is about more than our Marathon Walk team. Well over 100,000 people in the United States know they are battling this cancer. We have no way of knowing how many more are fighting it without knowing it–but even the most conservative guesses make that number out to be significantly larger.

Allies for research

In modern times, the outcome of most wars has been determined by the strength of the alliances formed to fight them. To a large extent, most of the organizations created to fight the war against carcinoid/NETs have done so in the same isolation members of our Walk team have faced this year. The Carcinoid Cancer Foundation and the Caring for Carcinoid Foundation–the two biggest foundations working on this disease–talk to each other and coordinate some of their activities. Walking with Jane tries to do the same.

…thinking about next year–and beyond.

But there are, perhaps, dozens of individuals, small groups, and organizations out there fighting to help find a cure for this disease who are unheard of outside of their region–or even outside of their local area. They get little or no recognition outside of a small group of followers in their area. Their events get no real national or–very often–even regional publicity.

Research and dollars

I know the NET Alliance exists. They have a nice website and provide invaluable resources for patients and caregivers. But their purpose seems to be patient, caregiver, physician, and researcher support through information, not raising money to support that research or bringing patients and caregivers together to do those kinds of things.

…there are, perhaps, dozens of individuals, small groups, and organizations…

Josh Mailman pointed out two weeks ago that we have a serious financial problem on the research side. We currently spend less than $50 a year per known patient–and more than two-thirds of that amount comes from trials drug companies decide to run. In terms of what comes from private sources, he thinks the figure is closer to $15 per known patient.

Building research–and infrastructure

We can’t fund a cure on that kind of money. We can’t really sustain the basic research we need to do–or the infrastructure that supports that research at our current funding levels. Neither drug companies nor the federal government will pay for that kind of research. That money has to come from private donors.

…we have a serious financial problem on the research side.

What I am proposing is an umbrella group–Allies against CarciNETs, for lack of a better name–made up of all the groups engaged in this fight, no matter their size or resources. It will not aim to promote a single day of awareness –as netcancerawarenessday.org does. Rather, it will work to facilitate and publicize fundraisers aimed at supporting regional cancer centers with NET cancer programs and creating a larger pool of funds for doing basic research, both regionally and nationally.

Building on what we have

The idea here is not to replace CCF or CFCF--I’m hoping they will be charter members. Rather, it is to augment and create greater leverage for the work they are doing. By creating a conscious network of all the smaller foundations and support groups we can increase the cross-pollination of ideas for raising money–and get those ideas out there to a much broader audience than any of us can currently reach on our own. It will also help each of us access people with the skills or knowledge we may individually lack.

We can’t fund a cure on that kind of money.

For example, I know a great deal about writing press releases and doing PR, but I am not very good at developing marketing strategies. I write powerful fundraising letters, but don’t have a broad enough mailing list to take full advantage of their potential. I’m certainly willing to let other organizations use those letters without any charge beyond a thank you, if it means we can garner more funds to support research and maintain and build up the infrastructure to enable that research to move forward.

The power of together

And none of us alone has a staff big enough to really do much nationally on our own. Together, however, we might be able to pull off a higher profile event.

The idea here is not to replace CCF or CFCF…

There are lots of problems we will need to resolve if we are to successfully raise the general consciousness about this disease. In a later post, I’ll discuss what I see as some of the issues we all need to think about.

 

Our team is an alliance of people with a single goal: killing carcinoid. Similarly, we need a national alliance of every carcinoid patient, caregiver, and organization to create the funds carcinoid/NETs research requires.
Our team is an alliance of people with a single goal: killing carcinoid/NETs. Similarly, we need a national alliance of every carcinoid patient, caregiver, and organization to create the funds carcinoid/NETs research requires.

NET cancer event addresses from Sirius broadcast

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I mentioned a number of things on today’s SiriusXM DoctorRadio program. The links to those events are below.

NET Cancer Lobby Day in Washington, DC. on September 30. They ask you attend a training session on September 29, as well.

Caring for Carcinoid/Walking with Jane, Hank, and Anne Jimmy Fund Marathon Walk team, September 21 on the route of the Boston Marathon.

NET Cancer Awareness Day on November 10–worldwide.

If you want to hear the rebroadcast of the oncology program Dr. Matt Kulke, Dr. Jen Chan, and I were on, it will rebroadcast on Thursday, September 11 at 4 a.m. EDT and on Sunday, September 14 at 2 p.m. EDT. You can also get it on demand. Visit the site for details.

Month 45: Moving forward vs. carcinoid

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Month 45 ends

Jane and I met Jen Chan, her oncologist at the Dana-Farber cancer Institute, for the first time four years ago yesterday. Today, 45 months after Jane’s death, Jen and I were on the radio with Matt Kulke, the director of the Program in Neuroendocrine and Carcinoid Tumors at DFCI to talk about carcinoid/NETs and Walking with Jane.

Every step counts.

After the broadcast, I wrote a couple of quick thank you notes, talked to the doctor’s office about my cranky right knee, then drove to the cemetery as I do on the tenth of each month to spend a little time at Jane’s grave. Every visit there leaves me feeling empty and a bit depressed but today was not as difficult as our 25th anniversary was eight days ago.

Every month has memories

My mood was buoyed by the good news on my knee–there is nothing seriously wrong with it beyond a bit of swelling, it turns out–and by the hour-long session on Sirius XM’s DoctorRadio broadcast. The doctors were great, and I managed to muddle through without making it clear I’m an idiot. It didn’t hurt that I was so depressed on September 2 I didn’t want to get out of bed. By comparison, any day other than the day she died or the day we buried her felt good.

Every visit there leaves me feeling empty…

That is not to say today has been easy. It has just been easy in comparison to some other days I’ve had lately. The months of August through December are filled with memory mine-fields of the halls at Dana-Farber and Brigham & Women’s Hospital, of going off to work alone every morning and coming home to an increasingly crippled wife every night, and of pretending everything was going to be OK when it clearly was not.

The tenth of the month

They tell me eventually I will be able to focus on the good times we had before the cancer took over our lives–that those last months will begin to fade enough to let those better memories through. There are–even now–moments when I can see our wedding day again, recall a trip to a museum or play, relive a hike or a climb. But the tenth of every month takes me back to her bedside on that last day–and to that last breath.

…August through December are filled with memory mine-fields…

August this year was particularly cruel. In addition to dealing with memories of our last trip together, the biopsy, and the diagnosis, I lost my father to a stroke and a niece to a drug overdose. I also have a cousin who finished her last round of chemo for her cancer last month for a particularly nasty form of the disease. There are days I feel stuck together by the low-tack tape that painters use to mask things off.

A month to think about mortality

The knee injury last Thursday was small cheese by comparison. But when the doctor says he thinks you may be down to bone-on-bone in your knee–essentially meaning that everything you like to do may be vanishing in a single step–it makes you think about your own mortality in a very non-theoretical way.

August this year was particularly cruel.

I am worried about what is going on in the carcinoid/NETs world. I want to think things are very different from they were four years ago. I want to think that Jane’s death and my efforts since have made a substantial difference in where we are. It let’s me sleep at night.

The month ahead

But while we have the Program at DFCI and some new drugs and radiation treatments undergoing trials, while we’ve made some strides in dealing with liver metastases, and made some small steps toward raising awareness, we still have substantial money problems. Money pays for lab space and researchers. You can’t pay for those things in promises and prayers. Without better resources than we have, no cure is going to be forthcoming.

I am worried about what is going on in the carcinoid/NETs world.

This year, our Boston Marathon Jimmy Fund Walk team will finally ellipse what we raised the year I joined it. That we’ve had to absorb another very successful team to do so means only that we will have equalled what the two teams raised last year–and only if we raise about $15,000 in the next 11 days.

Planning the future

Elsewhere, I am hearing about programs getting smaller, not expanding. We aren’t expanding the size of the pie fast enough. Nor am I certain what expansion we have seen is sustainable.

Money pays for lab space and researchers.

So we all need to sit down and do some thinking and some planning. While the news on my knee is good, I still have to stay off it for a few days. Tomorrow, I will start crafting a plan for the next steps in the process of taking down this disease. If I am lucky, some people will listen, add ideas of their own, and–most importantly–help put that plan into action.

We have a long way to go to defeat this disease. Every step counts.

In the 45th month of my journey without JaneI know more than when I started. We need a plan for where we go from here that is bigger than Walking with Jane.
In the 45th month of my journey without Jane, I know more than when I started. We need a plan for where we go from here that is bigger than Walking with Jane.

Money, resources at root of NETs issues

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On the money trail

I’m aggravated today. The fact is, I’ve been aggravated for several days. It began with a knee issue during a training walk last week that has left me frightened and hurting. But it is fueled by some things I’ve long suspected being confirmed about carcinoid/NETs funding as well as the stalled pace of fundraising efforts both for our Marathon Walk effort and other such efforts.

 None of us can afford to sit on the sidelines…

When I first started working on Walking with Jane, I spent considerable effort trying to unravel how much money was being raised and spent on the disease. That’s not as easy to do as it looks. Places like the American Cancer Society don’t do a very good job of saying what particular cancers they put research money into. Individual cancer centers suffer from similar problems. It isn’t that they won’t tell you. You just have to find the right people to ask–and they are not always easy to reach.

How much money?

Josh Mailman, a NET cancer patient who is also an impressive advocate for the disease, last week told a group of us in one of the online support groups the results of his latest efforts to unravel carcinoid/NETs funding. The numbers were not pretty–and some people in a position to know pointed out a couple of his figures seemed a bit over-optimistic.

It isn’t that they won’t tell you.

Josh’s estimate of the total available money for research into carcinoid/NETs is about $7.5 million. But less than one-third of that total comes from charitable giving. The lion’s share comes from drug companies and the federal government–though the feds currently contribute only about $1 million to the total. Individual giving, Josh thinks, still totals about what it did four years ago–about $2 million.

Patients and money

That works out to about $15 per known patient–a paltry sum that goes a long way to explaining why progress is so slow. Even with what drug companies and the feds kick in, we are talking spending on carcinoid/NETs per patient of around $50. In terms of cancer research, that is pathetic.

The numbers were not pretty…

Then, as that conversation continued, a doctor who heads one of the major carcinoid/NETs programs revealed that his department is being down-sized because there just is not money to keep it going at its current level. And if that program is in trouble, others likely are as well.

Too little money is too little money

Meanwhile, we keep writing letters and trying to invent new and different ways to raise money to fight this disease. But I feel sometimes as if we are trying to bail out the Titanic with a tablespoon. Between the three carcinoid/NETs teams that historically have done the Jimmy Fund Walk, we raised about $70,000 in the past. This year, with less than two weeks left before the Walk, it looks like we are going to be well short of that number.

…his department is being down-sized…

Part of that is my fault. I’ve had three gum surgeries since March, lost my father, my niece, and a good friend from high school. I still have not recovered from Jane’s death. I feel about as beaten down as a man can feel. The energy just is not there to get through things on too many days.

Money without walking

And now I’m looking at a knee injury that may mean not only that I can’t walk this year, but that I may never be able to take part in fundraising walks again as an active participant. Oh, I’ll volunteer and do all that I can, but I’m under no illusion that this will make my fundraising efforts easier. It will make those efforts more difficult.

…we are trying to bail out the Titanic with a tablespoon.

So I’m sitting here this morning  feeling sorry for myself, feeling sorry for patients, feeling sorry for doctors and researchers–and getting angry at myself that in three years I haven’t managed to do more than I have to get this thing moving forward. I’m thinking we need to rethink what we are doing on the financing side of things–rethink what we are doing on the organizational side of things–and do so in some pretty radical ways.

The road ahead

I don’t have answers for any of this that are ready for public consumption. I just know that what we are doing currently isn’t being very successful–and that people are hurting–and dying–as a result. We need to figure this out–and we need to do it soon.

…we need to rethink what we are doing…

I’ll be writing more about this in the coming weeks, but that writing can’t take place in a vacuum. We need all the interested parties involved in this conversation: doctors, researchers, foundations, caregivers, patients and families. None of us can afford to sit on the sidelines and watch or wait for someone else to solve the problems we confront.

Our money situation remains cloudy, leaving us with less than a show of a chance of a cure if nothing changes.
Our money situation remains cloudy, leaving us with less than a show of a chance of a cure if nothing changes.

Event aimed to change reality

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The other event that happened September 2

Another important event happened on Tuesday that got lost amid all the agony of our Silver Wedding Anniversary. Walkingwithjane.org celebrated its third birthday September 2. When I settled on that as a launch date I think sometimes I made a serious error in judgement. It was the first wedding anniversary I observed without Jane and I wanted something positive to keep me occupied.

Change begins with each one of us individually.

For that first anniversary, it served that purpose. It distracted me–in a small way–from the horror of that day. But in the days leading up to this September 2 I realized the website was not likely to get its proper attention. While it has not done everything I wanted it to do, it has been successful far beyond what I had any right to expect.

Event-filled first year

I didn’t know, as I wandered the wilderness that was 2011 for me, how much time and energy the whole concept of Walking with Jane was going to take. We’d launched our Relay for Life team in May of that year and quickly raised over $2500. I had set up my personal Marathon Walk page and joined the Caring for Carcinoid team in July. In the first night, I raised over $1000 of what would turn out to be a $4500 effort. That team raised over $35,000 total.

Walkingwithjane.org celebrated its third birthday September 2.

Whatever event or idea I touched seemed to flourish–and the website launch was just the latest in an ongoing series of successes. In our first 28 days, we had nearly 1600 views and over 800 visitors. By year’s end, we’d generated over 5000 hits. October, November and December, while not as strong as September, were all over 1000 views–and I expected 12,000 over the course of the first full calendar year was a realistic possibility.

Difficulties in the actual event

There were blemishes, though. The patient and research forums we set up as part of the initial package collected nothing but spam. I found that keeping up with the research was much more difficult and time-consuming than I expected. And I discovered that if I didn’t post something new virtually every day, the site visits tanked in a truly spectacular way.

Whatever event or idea I touched seemed to flourish…

Worse, no matter how much I studied search engine optimization protocols, we could only rarely get anything other than the name Walking with Jane on the first page of any search. What good was the website–what good was the information collected there–if no one could find any of it?

Event warred with event for attention

Worst of all, I’d over-committed on other fronts. I’d been asked to chair the local Relay for Life. I said yes–and agreed to do a lot of PR work for the event as well–not to mention captaining our Walking with Jane team on top of that. I was asked to captain a joint Walking with Jane/Caring for Carcinoid Marathon Walk team that would need to be rebuilt from the ground up after the chief organizer departed. I said yes–not realizing how devastating the loss of a good captain can be.

There were blemishes, though.

That fall, I also started the process of creating Walking with Jane, Inc., a non-profit foundation that would serve as an umbrella organization for all our cancer fighting efforts. Again, I didn’t know going in what a paper chase that effort would be, even with great legal help being donated to the cause.

Event after event on tap

I’m not very good at asking people for help–whether physical or fiscal. I’d bitten off a lot more projects than I could chew, even with an abundance of help. And I’ve never really learned that lesson. While I am no longer chairing Relay for Life, I’m likely to go back onto the planning committee this year. I learned a lot sitting in the bleachers this year as a captain–and it’s a perspective I need to bring back to the operation.

…I’d over-committed on other fronts.

I have a television news show on carcinoid/NETs I’ve been working on for the better part of a year I’d like to premiere this year; a desire to expand on the Fall River Half Marathon fundraising event Dan Hurley launched last year; setting a carcinoid/NETs alliance that this year’s Marathon Walk team is the first step to creating; and developing a real marketing plan that will get carcinoid/NETs in front of a much wider audience at every level.

In the event, I have more ideas than I can handle

Like the fight against carcinoid/NETs itself, I have more ideas than I have the resources to explore and carry out. But each of those ideas needs to be explored–and most of them need to move forward.

I’m not very good at asking people for help…

So I’m looking for partners. If you’ve lost someone to this foul disease and you are looking for something to do to fight back; if you have the disease but are in a position where carcinoid has not left you with no energy beyond that your body needs to keep moving; if you are a researcher or a doctor with even a few hours a month to do something outside the office or outside the lab–we need you.

We need an event that will change the math

Someone suggested in a private patient support group today that we need to raise about $100 per known patient to really make a difference in the fight against this disease. He estimates we are only really spending about $7 million on research on it–about $50 per patient. And if we take out what pharmaceutical companies are putting in, it comes out to less than $15 a patient. We need to do better than we are.

…I’m looking for partners.

That was true three years ago when this website started. It remains true today. Change begins with each one of us individually. But when we all pull together, we can accomplish great things. Let’s make killing this disease our next great thing.

By the way: after interest collapsing to the point I was ready to close this site down last winter, we’ve already logged over 9,000 hits this year–and had our two biggest months ever.  Thanks for your help.

No one is an island, nor do most of us live alone on one, however much it may seem that way at times. If the event we all devoutly want to bring about is to happen, we have to stop living and working individually--leave our islands--and work together to bring about the death of carcinoid/NETs.
No one is an island, nor do most of us live alone on one, however much it may seem that way at times. If the event we all devoutly want to bring about is to happen, we have to stop living and working individually–leave our islands–and work together to bring about the death of carcinoid/NETs.