Two days ago, I wrote about the successes of last week–how we had raised $3,000 for our Relay for Life team.

I am not complaining about the amount raised or the effort involved. Every penny helps regardless of the effort required to raise it. Nor do I begrudge the effort.

After I finished that piece, it came to me that if we raised $3,000 a week every week of the year, that would amount to $156,000. That sounded like a lot of money–until I realized that we need to raise millions every year if we want to kill this disease. And I know I cannot ask for that level of physical commitment week in and week out from people without killing them.

Walking with Jane is not the American Cancer Society or the Jimmy Fund. We do not have those numbers of volunteers, nor do we have the logistical reach. So if we are going to raise the kinds of serious money this work requires, we are going to have to find a more efficient way to raise it than bake sales, pasta suppers, and yard sales.

Not that those things are unimportant. Those events build a sense of teamwork in ways nothing else can. And the money raised is an absolute necessity in a world where seemingly a thousand charities cry out for money every time I open the mailbox or put on the TV.

But recent weeks have exposed my weaknesses in this kind of work. I am a writer. I am a public speaker. But I am a poor organizer. I hate the phone calls and the going in and out of stores asking for donations or space to hang a poster. I don’t like the feeling of relying on the kindness of strangers. It is a good thing the Greater Fall River Relay for Life has such a strong planning committee because its chairman–me–is way in over his head and far out of his comfort zone on the day-to-day stuff.

And none of this is helped by my own fragile mental and emotional state. In public, I present a strong persona that appears to be dealing with his loss very well. The truth is brutally otherwise. Those of you who have been there know what this is. Those of you who have not have no point of reference that can even begin to reveal it–and I truly hope you never find yourselves here.

The year before Jane started to have problems, our school year ended with a session on stress management techniques. Near the end, they asked us to write down a phrase we could put somewhere that would ease things for us in times of trouble. Our answers have proven ironic. Jane’s was, “Thou shalt not whine.” Mine was, “Welcome to Callahan’s,” a reference to a place where “Shared pain is lessened and shared joy is multiplied.”

When I finished rebuilding the study, I put those post-its where I could see them. My whining I mostly do in private. The work of Walking with Jane has become my Callahan’s.

Together, we will find a way.

I just finished rereading a book by Richard Feynman that I have not looked at in 30 years. Feynman was one of the lesser lights on the Manhattan Project during World War II who went on to win the Nobel Prize in Physics in the early 1960s.

Surely You’re Joking, Mr. Feynman is a series of stories about his adventures both before and after he became famous. Sometimes he is so obnoxious you want to punch him, but other times he makes a lot of sense. He is one of those guys who understands his particular science so well that he can explain it to a neophyte in ways that make sense–unlike a lot of the experts in any number of fields.

I was reading the book as a break from all the heavy stuff going on over the last two months. Between the trips to Dana-Farber, the projects of our Relay for Life team, and playing figurehead for the high-powered Greater Fall River planning committee, I have begun to feel a bit burned out–not unlike how I traditionally felt in June as the school year wound down.

Of course I can’t read anything without finding some connection back into the issue of cancer in general and NET Cancer and Carcinoid Syndrome in particular. The text often deals with looking at things in non-traditional ways that Feynman often sees as the key to developing scientific ideas.

That kept bringing me back to this idea that has been niggling around in my brain ever since our visit to Dana-Farber to meet with Dr. Kulke and tour one of the labs where they are doing the research on NET. That afternoon, I got to see the face of the enemy for the first time when they set up a culture of growing NET/CS cells under a microscope for me to look at.

As I looked through the microscope, they explained that there were two types of cells growing in the medium: carcinoids–the little buggers that pump out the hormones and peptides–and feeder cells. The interesting thing they told me was if the feeder cells are not present, the carcinoid cells don’t grow and divide. It is not clear why that is the case, but the feeder cells do something to the local environment that causes the carcinoids to grow.

Late last year, I was reading about prostate cancer and how the more aggressive prostate tumors are frequently found in the presence of carcinoid tumors. I’d also read that one of the more aggressive forms of breast cancer has a carcinoid relationship. Same with an aggressive form of lung cancer.

What I am about to say enters the realm of pure speculation based on logic–a dangerous place to go. But what if the feeder cells that create the environment that enables the carcinoids to grow also create an environment  that is more conducive to the growth of cancer cells generally? That would explain why other types of tumors who find themselves in proximity to NETs are more aggressive than those that are not.

And if that be so, then research into NETs and their feeder cells and how they work becomes important not only for those with NET/CS patients but for those dealing with other more aggressive cancers as well.

Three thousand dollars: that’s what we raised last week between the Pasta Supper and the Yard/Craft Sale. We are all of us pleased to have done that well. Three other Greater Fall River Relay groups brought their goods to market at the yard sale. They may have raised another $1,000 among them Sunday from that event. That’s $4,000 closer to our $350,000 planning committee goal from

just four teams last week.

Of course, that money was not really made last week–that just happens to be when the money exchanged hands. The Pasta Supper took weeks of planning, preparation and marketing. The poster and ticket designs alone were the project of hours, not minutes. Then the posters and tickets had to be printed. We spent a full day scouring Westport for locations that would put the posters in their windows.

The yard sale also took weeks of planning and preparation–and one of the things we figured out along the way was we needed to start that earlier and start recruiting participants earlier than we did.

But to the public, it all looks effortless if you have done the job right. They see the finished products–but not the underpinnings that got them there.

The Greater Fall River Relay for Life will likely raise $350,000-$400,000 this year–and maybe more. The Greater New Bedford Relay will likely top $400,000. Between the two there will be over 2,000 active participants on close to 200 teams. The general public will see the two-day events both groups will put on the weekend of June 22-23. The local papers will applaud the money raised and the American Cancer Society will be lavish in its praise of both organizations.

But only the active participants will know the thousands of hours that went into raising all that money.

And those efforts are repeated at thousands of other Relays around the country.

In September, thousands will walk the route of the Boston Marathon to raise money for the Dana-Farber Cancer Institute. Over $7 million will come in that day to fund the search for answers to the riddle of cancer. But few will see the effort that leads up to that day: the work of the walkers to raise the money, the work of the volunteers in support of those efforts, the hours spent organizing the event…

There are dozens of similar–sometimes longer–walks–some for cancer in general, others for specific cancers.

And we have made progress on some cancers. Childhood leukemia is no longer an automatic death sentence for most patients. We detect breast cancer early enough that a radical mastectomy is no longer the only option–and even for advanced cases, there is real hope for something other than an early grave.

But for some other cancers, it is still 1947. Neuroendocrine cancer is one of those.

Relay started in 1985. A young colorectal surgeon decided to run around a track, non-stop, for 24 hours. He would not sleep–he would not stop– because cancer never sleeps–because cancer never stops.

That was 37 years ago. Gordy Klatt, that young doctor, was diagnosed with cancer last month.

We still have miles to go.

Sunday is the Gigantic Craft and Yard Sale at the Westport Grange. The event supports our Relay for Life team. Proceeds from site rentals and our WWJ tables benefit our Relay team. The event starts at 9 a.m. and runs until 3 p.m. Lots of crafts in the building and lots of yard sale kinds of stuff outside–including WWJ T-shirts and other WWJ items–some at special prices. We will also have luminaria bags.

Join us.

Hubris is a terrible thing. We

live in an age when overbearing pride is more common than humility.

That is part of what made yesterday’s post hard to write. I hate coming across as bragging. I don’t like being perceived as having a big ego. There are, as I said a few days ago, lots of people involved in making this organization work. And there are people working on this in other foundations who have accomplished far more than we have and have been at it a lot longer as well.

The researchers will ultimately be the ones who find the cure(s) for neuroendocrine cancer and carcinoid syndrome. Our job is to support those efforts both financially and psychologically. I want us to get to the point that no one doing real research on this cancer has to wonder whether there will be funding for what they need next year. We can be fairly certain that funding will not be coming from the government at this point. That means that groups creating private funding need to grow bigger and stronger in the years ahead.

But with great growth comes the danger of hubris. We’ve all seen that playing out with the Komen Foundation this year. I don’t care what your position on any social issue is–cancer needs to rise above the level of national–or even local–politics. What the board members of a foundation believe privately should not enter into the equation of what they are doing to fight cancer. Every decision needs to come down to, “does this maneuver further the goal of ending cancer?” If it does, then do it. If it doesn’t, then don’t.

If you like or don’t like something else, go set up a different foundation to deal with that. The legal charter of your foundation says what it is you are doing. As an organization, that is all you should be talking about: the things your charter says are your goals.

The American Cancer Society sometimes suffers from a different form of hubris. ACS’ great strength lies in the power of its grassroots. You can’t run Relay for Life–the largest single charitable fundraiser on the planet–without the volunteers at the community level. Sometimes it seems they forget this at the upper levels. Sometimes they see other charities as competition–as a threat to ACS’ existence.

We all need to remember what the goal is: raising money to defeat cancer. Money raised by one general cancer organization is, hopefully, going to the same purpose as money going to another general cancer organization. Some are more efficient at it than others–that is where the competition needs to be–and all of us need to do our homework to make sure who is doing the best job of that. Other organizations are focused on specific cancers–and we need to be aware of that as well.

But we all need to be trying to grow the pie, not fighting over our share of it.

I hope we can keep our focus on those kinds of issues. If I stray from that here, I want you to call me on it.

It is easy to lose sight of the successes amid the seemingly daily disappointments. Those who knew both Jane and me know that we were not happy with slow-paced developments even when every day brought progress. When things felt like three-steps-forward-two-steps-back, we both got frustrated.

The start-up of Walking with Jane has often seemed more like the latter than the former.

But in the wake of Wednesday’s highly successful Pasta Supper–we raised close to $2,000 that night to support our Relay for Life team–I’ve been thinking about what we have accomplished over the last year. While we have not accomplished all I would have liked, we have done more than a rational man could have expected.

A year ago, we were headed into our first Relay for Life in Taunton. We had designed a logo and put it on shirts and bags, of which we had sold more than a few. And we had plans for buttons, bracelets, and water bottles. We really had no idea what Relay for Life was beyond that it involved walking in circles for hours at a time.

Last year, over two Relays, we raised about $4,300.

At the Greater Fall River Relay, we won the Team Spirit Award.

Fast forward a year, and just in that one area, our accomplishments have been substantial. The items we had plans for have all made their appearance, as well as a new line of T-shirts. I was asked to chair the Greater Fall River Relay, which forced me to drop Greater Taunton simply because of the time commitment. With Wednesday’s event, Walking with Jane’s team has moved within spitting distance of $7,500 raised for this year–and a realistic shot at our team goal of $10,000.

But we have done more than craft a Relay team.

In September, I walked from Hopkinton to Boston along the route of the Boston Marathon for the Caring with Carcinoid team as part of the Jimmy Fund Marathon Walk fundraiser. We raised over $4,400 for that event, all of which went to fund research at Dana-Farber.

While we were raising money for that last summer, we also launched the Walking with Jane Page on Facebook, recruited Carissa Broadbent and Mike Goeppner to design and build this website, and put together a team to create content for it. Another group helped put together a marketing plan.

Between September and the end of the year, we raised another $23,000 for the Dana-Farber Cancer Institute, including the initial funding to establish the Walking with Jane Dybowski Fund for Neuroendocrine Cancer there. We also raised $5,000 for Caring for Carcinoid that resulted in another $10,000 for them in matching funds.

We also put together a team that created the materials for a national press kit for Worldwide NET Cancer Awareness Day.

We’ve also worked to establish positive relationships with the American Cancer Society–both at the local and national levels–the Dana-Farber Cancer Institute–especially with the new Program in Neuroendocrine and Carcinoid Tumors–the Caring For Carcinoid Foundation, and the Carcinoid Cancer Foundation.

Barely a week ago, we became a 501 (C)(3) charitable non-profit corporation chartered by the Commonwealth of Massachusetts.

Not a bad year’s work when you look at it.

I finished reading The Emperor of All Maladies two weeks ago. I have waited until now to write about the book in any detail for two reasons. The first is pretty obvious: Jane and I lived many of those stories. The first chapter launches into a discussion of a case of a rare form of adult leukemia. The disease has been discovered very late in its course. The woman is deeply ill, so ill that she has to make daily runs to the Dana-Farber Cancer Institute to see if she is healthy enough for her chemo treatments. For weeks she is told no, she is not strong enough.

Jane did not have leukemia, but we had to wait for weeks because her cancer load was too high to risk the heart operation she needed. And every day we had to wait left her heart valves more and more damaged, left her body weaker and weaker, left her with less and less chance of successful surgery.

The woman in the book, though, had treatments that offered hope of real remission. For Jane, all we had were drugs that might slow the progression down–but nothing that would knock the cancer backward. Jane’s case was more analogous to the children with late stage leukemia in the late ’40s and early ’50s. Reading those stories was hard–at times wrenching. Many were simply too close for comfort.

But equally hard to deal with were the stories about the medical and social politics of cancer. We laypeople like to think of doctors and researchers as altruistic sorts who share their knowledge about diseases and their cures selflessly. It turns out this is rarely the case. The medical people play with their cards very close to the vest, often withholding information from each other in the hope of getting the fame that goes with the credit for a scientific breakthrough.

And as though that were not bad enough, the cancer organizations are rife with both internal and external politics. The takeover of what would eventually become the American Cancer Society by the Laskers and their allies in the 1950s has all the hallmarks of a Machiavellian overthrow of a nation’s leadership. And the battles between groups vying for funds for their particular cancer is not significantly nicer at best–and considerably more vulgar at worst. People are less interested in creating a bigger pie for everyone than in maintaining and expanding their own piece of the pie.

And God help you if you have what the majority has termed a “minor” cancer. Trickle down economics provides more money for the impoverished than a “minor” cancer gets if it is once bullied away from the table. If the federal government turns its back on you, and so will the major foundations and drug companies.

And Jane contracted one of those minor cancers. There had been no serious money spent exploring NET/CS in the US for a very long time. Once her first doctor missed the diagnosis, it was only a matter of time before it killed her. She, at least, knew what she had. Most never do.

That has to change.

The Walking with Jane Pasta Supper is tonight from 5-7 p.m. at the Westport High School Cafeteria. Tickets are $10 for adults, $5 for students. All proceeds benefit the Walking with Jane team of the American Cancer Society’s Relay for Life of Greater Fall River. If you are going to be in the area today, please come by and join us.

We will also have Walking with Jane items for sale at the event at prices that are less than the online store. We will also have ACS luminaria bags on sale and the paperwork for joining our Relay team–or anyone else’s.

One of the people on Walking with Jane’s board of directors asked me a good question Saturday night: “What have you done for you lately?”

Jane and I were both very bad at taking time for ourselves during the school year. Every summer, we took a week away from home where we could focus purely on us. It was the only way we could do it.

Since her death, my focus has been on this cancer. While she was sick, I worked to keep her mood and her mind positive. I bottled up the anger and the pain and focused that energy on looking for answers and helping her get through every day. I could not afford to get angry or lose control of my emotions in negative ways around her.

After her death, I had two priorities: finish my teaching career as strongly as I could–our students deserved that–and begin figuring out what I could do to prevent others from going through what Jane went through the last month of her life.

But a third priority soon made its presence known: we had both underestimated the emotional impact of her death on me. For weeks, I could not sleep more than a couple of hours a night. I found myself wandering the house aimlessly. I had great difficulty concentrating on grading papers. I had even greater difficulty controlling my temper. I found it hard to revisit places we had enjoyed together. There are television programs we were dedicated to I can no longer stomach. “House,” in particular, was impossible to watch.

I did–and still do–the things they say you should do. I take a walk nearly every day. I try to maintain regular habits in terms of sleeping, eating, and cleaning. I participated in grief groups both online and in the physical world. I recite a mantra similar to those in AA: one day at a time–sometimes one minute at a time.

And I think I am making progress. I read a novel last week. I went to several plays over the course of the winter. I watch a range of movies. Tonight, I went to an art show. I try to put myself in social situations–even though they make me hugely uncomfortable.

But the cancer still dominates much of what I do. Nearly every conversation ends up circling back to cancer. It is not always NET–sometimes it is breast cancer, Hodgkin’s lymphoma, cervical cancer, uterine cancer, lung cancer–but most often it is. Every day brings me new knowledge about the disease. Much of the news is positive: we know far more now than we did 21 months ago. But even the positive news has some sting to it. I have learned too much about the politics of cancer and the impact it has had on NET research–and likely will continue to have.

June will be a difficult month to find time for myself in. Between now and June 23–the close of the greater Fall River Relay for Life–there is much to be done both for Walking with Jane and for the Relay.

But my friend is right: I need to find time for me.

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.