The NET Cure Crawl idea came to me last fall after spending several hours watching videos of sessions from a patient seminar.  One of them ended with the presenter saying that the slow rate of growth for neuroendocrine tumors meant we did not need so much a race for a cure but “the crawl for the cure.” He even had a nice graphic of a snail to go with the comment.

At first, I have to admit, the comment upset me. There is still a part of me that smarts a little when I think of it. For people diagnosed as late as my wife was–which is too often the case–taking our time getting to a cure is not a good answer. Even for those diagnosed at an earlier stage–but after the point where surgery will deliver a cure–slow movement toward a cure is not very helpful, especially for those who are nearing the end of that journey. I have, in the last 17 months met too many of those patients as well.

As I said at one point last week, at our current funding levels we might get a cure, if we get lucky, about 2030. Most of those currently diagnosed with the disease will have succumbed to it by then. And if we don’t get lucky, 2045 will arrive before we have raised enough money to get s sniff of a cure. Essentially, not finding ways to bring far more money into NET and carcinoid research means we are signing the death warrants of the vast majority of those currently living with the disease–just as the federal government essentially signed Jane’s death warrant when they eliminated all funding for carcinoid in 1968.

The word crawl had peculiar resonance for me when I heard it last year.

In winter–or when it got too hot and humid in the summer–Jane and I would frequently go to one of the local malls to walk for an hour or two. During school vacations we would arrive a couple of hours before the stores opened and join the “senior citizens” and store employees for their morning power-walks. We called these excursions “mall crawls.” Afterward, Jane would get a coffee and I would get a juice and we would sit in the food court for a bit talking and looking out the window.

My thought was to get a bunch of malls to let us do fundraising/awareness walks on November 10–Worldwide NET Cancer Awareness Day. But the idea came to me too late to really organize even one–though I started to do so. I talked with some people at Dana-Farber about it and it seemed to make sense to them, but there just was not enough time to think through how to do it.

I have been doing a lot of thinking about the “Crawl” in recent months. But I have also seen the number of volunteers it takes to pull off a major event with a single venue. Just the planning of the Relay for Life takes upwards of 40 people for a single site. It takes hundreds of volunteers just to staff the water and food stops on the Jimmy Fund Marathon Walk. My initial thought was the great difficulty with the idea would be getting malls to buy into the idea. But the more I have learned by watching the Relay for Life, the Walk for Hunger, and the Marathon Walk, the more I have come to realize the real problem will be finding people to organize and staff each event site.

So tonight’s call for volunteers is about those two things. My plan is to try to pilot this thing locally this fall at three local malls, assuming I can get them on board. But I need people to help plan that event–and people to help staff the sites when we get there.

Drop me a line if you can help.

The last students at Westport High School to have a clear picture of Jane in their heads will graduate within the next two weeks. The last group to have her in class graduated a year ago. The last group to know about her through me will graduate in a year.

There were plans to dedicate a memorial garden in her memory in a courtyard of the school. I don’t know if those plans ever bore full fruit. If they did–or do–there will be a plaque of some kind there with her name on it. But within four or five years, almost no one will know anything more than the name–and most of those who do will be the handful of teachers that worked with her toward the end of her career.

Her students will remember her. Each of them will carry the spirit she gave them throughout their lives. Pieces of the attitudes she tried to instill in them–respect for others, respect for the pursuit of knowledge, the idea that no task is impossible no matter how difficult it may seem at first, that women can do science–or anything else –will find their way into those students’ children and grandchildren.

But if Walking with Jane is to accomplish the final goal of her life–the defeat of neuroendocrine cancer and carcinoid syndrome–then we cannot remain tied to Westport High School in Westport, Massachusetts. We have to find ways to grow beyond putting on local suppers and yard sales.

And I don’t know how to do that–at least not yet.

We had our first official board meeting last night of Walking with Jane, Inc. We talked about the point of diminishing returns, about the fact that students in Westport will soon not have even an institutional memory of her, about the demands on people’s’ time created by family, by career, by other fundraising programs. We agreed we will need more people to carry this mission forward. We agreed we have to figure out how to grow beyond the South Coast of Massachusetts. We agreed that we need to figure out how to get to the big leagues inhabited by the likes of the Komen Foundation and the American Cancer Society.

And we agreed that while we do not know now how to do that, we need to figure out how–and the key to that is looking at how the heavy-hitters got there.

Some will argue there is no need for that–that there are other groups that are better equipped to get there than we are–that this is a minor cancer that kills only slowly–that there are other things in the world with greater priority.

Only the third statement may actually carry a grain of truth in it–but to the people consigned to a slow death because of NET, there is likely not a lot that is a higher priority. Global warming won’t matter much to you if you are dead.

So our job needs to be more than building a better bake sale. We need to figure out how to grow this effort the way one would grow a business. The goal is clear enough. How to get there is the next key.

Less than a month separates us from the Greater Fall River Relay for Life at this point. The next ten days will be especially hectic as I try to juggle Walking with Jane’s first board meeting since becoming a 501 (c)(3) non-profit, final preparations for our Pasta Supper Wednesday night at Westport High School, final preparations for the craft/yard sale at the Westport Grange June 3, playing team captain for our Relay team, and the things that go down in the final month of any major undertaking as Greater Fall River Relay for Life chairman.

And all of that is going down as I start trying to figure out how to make the $3 Million Dollar March work, getting my Marathon Walk ducks figured out, and laying the groundwork for our first attempt at the Cure Crawl November 10.

Someone asked me again today how my retirement was going. I laughed. I was retired for a grand total of maybe 25 minutes–the time it took to drive from the retirement party to the Relay for Life last year. All of this gives me something beyond my own grief to focus on.

Not that the grief really goes away. But it serves as a powerful motivator. I want this disease dead so that no one else goes through this emotional roller-coaster. I’ve written about that before–so I won’t recite the awfulness of it here again tonight. This endless pounding on the keyboard instead of talking with my wife really does suck. I like all of you well enough, but on the whole I would rather be rubbing Jane’s feet and watching some crime drama with her than doing any of this.

But I can’t change any of that for me. I can only encourage you to take care of your loved ones, spend as much time as you can with them, and show them that you love them with every action you take. Telling them that is hugely important as well, but making it clear with more than words is even more important.

Last night I thanked all the people who make this organization possible. Tonight I am asking the rest of you–whether this is your first time here or you are a regular visitor–to join us in this fight. There is a whole list of things you can do on our Ways to Help page. Much of that asks for your time rather than your money. We always need people who can write, who can edit, who can offer advice, who can organize.

This month, we especially need people who can walk, who can help man a booth, and who can laugh. June 22-23 is the Greater Fall River Relay for Life. If you can join us for even a couple of hours that night I can promise you a potentially life-changing experience–whether you walk with our team

or someone else’s.

I’m also recruiting people to do the Marathon Walk on September 9. I’d like to field a Walking with Jane team this year but I can only do that if we have enough walkers that I think we can get to $10,000 on our own. Give it some thought and drop me a line if you want to give all–or part–of the walk a try. Ten people would be enough, I think.

We will need people for other things as well. That is tomorrow’s subject.

Walking with Jane is now officially Walking with Jane, Inc.

I got the call this afternoon from our lawyer who told me that his office received the paperwork from the Commonwealth of Massachusetts department of state approving our by-laws and chartering us as an official (501) (c)(3) charitable non-profit corporation. Over the next few days, we will get a tax ID number from the IRS and set up a bank account specifically for Walking with Jane.

This arrives just as we are setting up the $3 Million March Campaign and as we are trying to put together a series of fundraising events we hope will eventually help us help the NET/CS community raise the kind of money it will take to extend the serious progress made on understanding this disease in the last 18 months into earlier diagnosis and new therapies aimed at curing this nightmare of a cancer.

Getting this organization to this point has been anything but easy–and has been far from a one person effort. While I may be the point person for Walking with Jane, there is a whole host of people working behind the scenes to make all we do possible.

First there is the board of directors: Gail Silvia, Arlyn Bottcher, Morgan Bozarth, and Scott and Wendy Atkinson. When I asked them to help put together our Relay for Life team last year, their only question was “What do you need me to do?”  And they have done it all–right down to propping me up through the long walks in the dark–both figurative and literal. Walking with Jane does not exist without the help they have delivered over the long haul.

Dan Albernaz ran our first successful spin-off team this year at Bridgewater State. He started out as a jack-of-all-trades at last year’s Greater Fall River Relay and challenged himself to create a Walking with Jane team for the college circuit. His experience will help us create more Walking with Jane teams in the future.

Carissa Broadbent and Mike Goeppner designed, built, and maintain this site. Mike also handles the SEO chores that keep us near the top of the list on search engines. Emily Brinkmeyer edits the copy. Todd McAdam and Dominic Gadoury throw their expertise into the mix whenever we ask–and sometimes even when we don’t–which is a good thing since I still don’t quite understand this whole website business.

Phil Devitt is our resident publicity ace. He organized all the stories in the press kit and writes and edits whatever we throw at him. Phil also serves as the publicity chair for the Greater Fall River Relay for Life. He is ably assisted by Becky Martins, Katie Dupere, Meg Flanagan–who is also working on our race teams project–and Emily Brinkmeyer.

Paula Stanton and Jessica Sousa help out with PR and marketing advice.

Brandon Cardoza is our ace carnival barker. The guy could sell ice to Eskimos.

Then there are the people at Dana-Farber: Dr. Jen Chan, Dr. Matt Kulke, Sarah Church, just to name the people I have the most contact with. But there are another dozen people in the development office who have been free with their time and advice over the last year.

Then there is Ellen Eisner, the former CDO at the Caring for Carcinoid Foundation who gave me advice on starting this thing from the day we first met on the phone–and who continues to take my calls and answer the emails I send her.

And there are all of you who pass these notes along, who drop me notes when I am having a bad day–and laugh with me when I need to laugh.

Finally there is my family–and Jane’s–all of whom have been insanely supportive of this effort from the start. But I especially owe thanks to Jane’s sister Gail, my brother David–who came in from Seattle to walk with us last year–and my niece JJ, all of whom have made commitments not only in terms of money but also in time and moral support.

Thanks to you all, we have a corporate reality. Thank you.

We spent about $3 million nationally on NET/CS research last year. That is not exactly a lot, but it was every penny raised by

a number of small foundations–and then some.

I’ve already written about what we spend on the different cancers, and I’ve already detailed how little $3 million will buy versus the $100 million Caring for Carcinoid estimates it will cost to find a cure. And over the last several months, there have been some significant donations made that were not there a year ago.

There have also been some significant breakthroughs in recent months that will shortly find their way into publication–breakthroughs that are significant steps toward finding a cure. But they are only steps. And if we are going to take full advantage of their promise, we are going to need far more resources than we have now.

I’d like to see us double that $3 million raised last year. And I’d like to double that amount again next year and again the year after. That would take us to $24 million for 2014. And that would open up lots of possibilities we do not have now.

The question is: How do we get there?

The short answer is, we get there one idea at a time, one donation at a time, one event at a time.

The longer answer is the $3 Million Dollar, 3 Million Person March. There are potentially three million people walking around with NET right now who do not know they have it. Three million dollars represents $1 for each of those potential patients. We want to reach three million people with the simple message of what NET is and what it does before the end of the year. We want each of those three million people to make just a $1 donation to doing the research and the education that will put this disease back on its heels.

Will we take a bigger donation than $1? Absolutely. But in terms of raising awareness, we want to reach three million people.

So starting next month, I am going to start pounding the pavement–and pounding the keyboard. I am going to put together a letter about NET and mail it to every newspaper I can think of. I am going to send that letter to everyone I know–to everyone I have an address for. And at the end, I am going to ask each of them for $1 so that we can find answers to this disease.

I am going to go door-to-door in my neighborhood and talk to people about NET and ask each of them for $1.

I am going to seek out organizations I can speak to about NET. And at the end of each speech, I am going to ask each person in the audience for $1.

From now through September 9, the money I raise that way will go into the Dana-Farber Marathon Walk. That money will go to support research at the Dana-Farber Cancer Institute’s Program in Neuroendocrine and Carcinoid Tumors. Money raised after that will go directly to the Walking with Jane Dybowski Fund at Dana-Farber to support research and education about NET and CS.

Obviously, I don’t know three million people. That’s where all of you come in. You can learn the symptoms of NET right here. You can share that information with the people you know. You can ask each of them to contribute $1–and then send us a check for whatever you raise.

You can arrange for me to speak to your local Chamber of Commerce, Kiwanis, Knights of Columbus…

You can copy the letter I will put together and send it to the people on your Christmas Card list.

Start today. Send $1 to Walking with Jane, P.O. Box 9721, Fall River, MA 02720.

And share this note with as many people as you can.

Together, we can raise the money to kill this cancer.

I started working on this project just about a year ago. I didn’t know much about NET–and what I did know I had learned in ways no one should have to learn anything: I had learned about it by watching my wife die from it. I had learned about it because in my grief, I needed to understand the thing that was killing her–and that killed her. I needed to crawl inside its head so I could save her life. And after her death, I had to learn about it so I could find a way to kill it.

For a time I honestly thought about finding a way into medical school. I thought about a Ph.D in biology. I thought about nursing. It eventually dawned on me that any of those paths meant an endless grind of coursework. I would need to get another bachelor’s degree, likely another master’s, spend four years in medical school, then do a residency. I would be 70 before I could do anything meaningful, even if I could find a medical school willing to make the time investment in a senior citizen who would qualify for Social Security before he could start dealing with the real issues I wanted to deal with.

So I started reading. And the more I read, the more it became clear to me how little we knew about the supposed zebra that had kicked my wife to death. We were not even sure how many people had it. We still are not. We lack the kind of knowledge about it that we have about many other forms of cancer. And general practitioners don’t have enough information to even suspect it exists until after they see their first case. I knew how much trouble we were in when I read the motto of one organization fighting the disease: “If you don’t suspect it, you can’t detect it.”

And then I discovered the money issues: the federal government was spending next to nothing–had, in fact, spent nothing at all for 40 years; less than a handful of organizations were raising money for research–and they were not raising much. The year Jane died, less than $3 million was spent on research into NET/CS. And things are only marginally better now than they were then.

Despite all my years in journalism, I have discovered how little I know about public relations and fundraising over the last 12 months. I thought getting the attention of the major media would be a simple matter of presenting the facts of the case to the right set of people–and I thought I knew who those people were. And I was wrong.

I thought once I had worked out how Facebook worked, we would turn into Barack Obama’s 2008 campaign. I thought once this website was up and running, we would have a vehicle people would pay attention to. I thought we would find a way to make this cause viral.

But the learning curve for all of this has been steeper than I anticipated–and the amount of work has proven far greater than I expected as well.

That does not mean I am giving up. I’ve learned a lot in 12 months’ time. And I have more to learn.

But we are coming for you, NET. We will hang your scalp on the wall. We will.

It’s a beautiful Saturday afternoon in May–the kind of day Jane and I would go for a walk and ignore the world for a few hours just to enjoy the air and the sun and each other’s company.

I ran a 5K this morning in 34:00 flat–as we used to say. I am headed for the deck and the hummingbirds and some light reading.

Go out with those you love today Enjoy the time together. Let the world turn without you for a little while. You have no idea how long you have together–and this is an awful day to spend reading stuff about this awful disease and the battle to end it.

I’ll write about that stuff tonight. You can read it then. Or you can read it tomorrow or the next day.

But spending time with your loved ones is the order of this day.

Now go!

In doing the research for my last post, I came across some numbers that demonstrate the craziness I have come to expect on cancer spending.

In 2008, the last year for which we have numbers, 12,410 women were diagnosed in the US with cervical cancer, according to the CDC. Just over 4,000 women died of that form of cancer.

According to the National Cancer Institute, the federal government spent just over $90 million on research into cervical cancer in 2010 between the NCI budget and ARRA funds. Additional funds for research came from organizations like the American Cancer Society and other groups.

Depending on whom you talk to, there were 11-12,000 cases of neuroendocrine cancer diagnosed last year. About 12,000 of those who know they are fighting the disease die each year.  We have no simple, inexpensive screening methods for the cancer, and there are some indications that the majority of NETs are never diagnosed, so both numbers may be substantially higher. One study suggests there may be as many as 3 million undiagnosed cases in the US right now.

NET cancer has about the same number of cases diagnosed as cervical cancer. Nearly three times as many people die from NET Cancer–that we know about–in any given year.

Yet our total spending on NET Cancer last year from ALL sources totaled–at best–$3.5 million, and was likely less than that from what I have been able to piece together. Early indications are that spending will improve somewhat this year, largely due to the commitment of the Dana-Farber Cancer Institute to the foundation last year of the Program in Neuroendocrine and Carcinoid Tumors.

The Caring for Carcinoid Foundation says finding a cure for NET will likely cost between $50 and $100 million. Given what we have spent on breast cancer without finding a cure for all of its forms, I am not sure I buy that number. But assuming they are correct, at our current rate of spending we can expect a “cure” about 2025 at best–and more likely around 2040. And that assumes we at least match the medical inflation rate in terms of increased spending over that period.

We really can’t count on government spending to bail us out. The federal deficit is a problem that is likely to leave us where we are right now. The good news, I suppose, is they can’t cut much from an allocation that is close to zero to begin with.

In launching the Program in Neuroendocrine and Carcinoid Tumors, the Dana-Farber Cancer Institute has demonstrated a substantial commitment to finding answers to this cancer in all its forms. But they are going to need substantial, ongoing financial support.

The reality is if we want a cure for this disease it is going to come down to what small operations like Caring for Carcinoid, the Carcinoid Foundation, and Walking with Jane can bring to the table. It means we have to start thinking in larger terms than we have to now. It means we all have to grow.

In tomorrow’s post, I will begin to outline plans to grow Walking with Jane’s contributions to the pie with new money.

If a thing does not have a clear connection to NET/CS, I usually do not write about it here. But I learned something about a different type of cancer last night at a Dana-Farber event that was so stunning and–from a number of standpoints–so important that I am willing to break my normal habits to talk about it.

Most of you know we have an HPV epidemic going on in this country. Many of you also know that virtually every case of cervical cancer is caused by the HPV virus. In 2008, the last year for which we have numbers, there were 12,410 cases of cervical cancer diagnosed in the US. That number represents a significant decline over the last generation or so, largely thanks to the use of the Pap smear that detects abnormal cells in the cervix before they have had a chance to become cancerous. Those abnormal cells are removed in a fairly simple procedure and the woman does not develop cervical cancer as a result. Of course the screening has to continue since the potential is always there for other cells to mutate as a result of HPV, but fewer and fewer cases of cervical cancer are detected every year. But over 4,000 women still die from cervical cancer each year.

In the past couple of years, we have developed a couple of different vaccines for the HPV virus. There has, despite the increasing number of cases of HPV, been considerable hue and cry over the morality of the vaccine–HPV is a sexually transmitted virus–and whether or not requiring girls to get the vaccine before they might become sexually active is a good idea. For reasons I don’t understand there has not been much said about vaccinating young boys at puberty one way or the other–which strikes me as strange since the last time I looked sex generally involves two people. Given our culture, I suppose the illusion that HPV was/is doing little or nothing to the male population may have had something to do with that.

But until last night, I had heard very little about cancers involving HPV outside the cervix.

One of the doctors I sat with last night specializes in head and neck cancer–and he told our group that particular cancer has reached epidemic proportions. The medical community expects 52,000 new cases of this cancer to be diagnosed this year. That number is doubling about every 5-10 years–so by 2022 we can expect over 100,000 cases a year.

And many of them are spawned by the HPV virus–80 percent of them in men in their 30s, 40s and 50s..

The good news is there is an 80-90 percent cure rate. The bad news is the cure leaves the victims so debilitated they cannot work at all for three to four months. And in a significant number of cases, the person’s salivary glands are destroyed, leaving them on a feeding tube for the rest of their lives. The

treatments also often destroy the person’s teeth in the process.

Curing just one patient costs about $100,000–and never mind the productivity and human costs involved.

Yet many cases of this disease are preventable if people would just get vaccinated before becoming sexually active.

Exciting things are happening all around me lately: the launch of the Program in Neuroendocrine and Carcinoid Tumors and its website at Dana-Farber, the significant growth in the number of teams, participants and fundraising for our local Relay for Life, the success of various fundraising programs, news of new drugs and techniques for the cure of other cancers, the list of discoveries about NET and CS at Dana-Farber and elsewhere…

A few weeks ago, a friend observed that I don’t seem to get outwardly excited about much–even when it seems like I should.

Once, before Jane got sick, I would get excited about things–especially positive things that were going on around me. But the weekly–sometimes daily–sometimes hourly–shifts in prognosis and health during the last four months of her life have made me very reluctant about getting too enthusiastic or too depressed about any single moment or event. That piece of me is so thoroughly traumatized and desensitized that I sometimes feel like a block of un-carved wood.

We were both easily excited and discouraged in the early days of her illness. Cancer that has spread to the liver has no cure, we read. We both started thinking in terms of months. The cancer was rare, but slow-growing, we were told. We had permission to think in years. There was a trial we might qualify for. But then Jane’s tumors were too advanced to qualify. There was a potential heart issue. But we could fix that with an operation. But the valves were more damaged than they first appeared–and that was just part of what we went through in the first month after the diagnosis.

We were thrilled when her appetite returned after her first injection–just as we had been thrilled the day after she got the first medication for the swelling in her legs and found the stairs effortless again. Neither effect lasted more than 48 hours.

The days in the hospital spun us around sometimes hourly–and on December 9, we went from planning what we would do when she got out of rehab to me trying to wrap my mind around her impending death within what seemed like minutes.

Now it does not matter how good or bad the news is–my response is perpetually tempered by the expectation that everything could change before I have even had time to adjust.

I don’t know what that makes me. I don’t know if it makes me a more effective advocate or a less effective one. I don’t know whether that makes me a better or worse human being. I only know that it is who and what I have become.

I will get excited again some day, I think. Sometimes I allow myself the daydream of the day we put this cancer to rest–the day we unravel enough of its mystery that it is as vulnerable as it left Jane at the end.

I tear up at the thought.

But I know we are not there yet–and that it is not yet time to celebrate.