We are making a difference.

That’s what they told us at Dana-Farber last Friday. I keep looking at the small amount we raised last year compared to what others could do–and in some cases did do. And I keep wondering how what we have done could mean that much.

But it does. And the reason it does is a little thing called leverage. As a philosopher in ancient Greece once said, “Give me a lever and a place to put a fulcrum, and I can move the world.”

The money we raised last year created a place to put the fulcrum. It seems a little thing, but that money made other money possible. It set some things in motion that in the long term will change the situation for patients with NET. In the long term, it may save lives.

But I have to admit I am greedy. I want the long term to move as quickly as possible into the short term. Sometimes I think people think I am kidding when I say I want this cancer dead–that I am engaging in hyperbole. I’m not. I want this cancer to be like smallpox–a story to scare small children with about the bad old days like the bogeyman. And I want it to happen sooner rather than later.

I want it to happen sooner rather than later because I begin to suspect that my speculations about this cancer are correct: that it is the man behind the curtain–the reason that many cancers are more aggressive than they might be. I’ve been thinking about those feeder cells that allow the carcinoid cells to grow–and I wonder if those feeder cells create an environment that makes other cancers grow more rapidly as well.

And if that is true, then unraveling NET may be one of the key moves in taming those other aggressive cancers.

Yes, we have a place to put the fulcrum, but we still need to buy the fulcrum and the lever and figure out which way things need to move. And all of those items have scary price tags.

We can’t afford to be done yet because the cure is still out there waiting for us. We are doing the basic research that will get us there–but we are not there yet.

Jane’s mantra in the hospital haunts me every day: “We have to keep going forward.”

There are 38 days between us and Relay. There are just under four months to the Marathon Walk. There are just under six months to NET Awareness Day. Each of those event is important–but the days in between are even more important. Every day, I want at least one more person to hear about NET. Every day, I want to find one more donor, one more way to find the funds we will need to win this fight.

Together, we can make those things happen. Jane would like that.

Okay folks, I have a harebrained idea. You either have to help me figure out how to do it or tell me I am crazy for even considering it. I had planned something else for today’s post, but then this idea burst into my brain this afternoon–and I’ve been kicking it up and down the stairs ever since.

The idea is the Three Million Dollar March. I’d like to launch it June 9 and use the initial income for the Marathon Walk on September 9.

The details: We now suspect that NET is NOT a rare disease. We think there may be as many as three million Americans walking around with NET right now–just under one percent of the population. Most will never know they had it because it will cause something else that their deaths will actually be attributed to: heart disease and aggressive forms of lung, breast, or prostate cancer being the most obvious examples. But all of those were really caused by the underlying NET that will never be discovered.

Last year, we spent barely $3 million on NET research. That’s about $1 for every potential case of NET out there. The idea is to double that amount by getting 3 million people to donate $1 each.

The idea grows out of two things I saw in the last 10 months. In September, I was at a yard sale at a friend’s house trying to sell Walking with Jane items. It was not going well. After noon, I changed tactics and just asked each person who came through for a $1 donation–for which I gave them a Walking with Jane button. We did over $200 in four hours.

At an ACS leadership event, we were asked what we thought was the simplest way to raise money. One group decided to try their idea. They went around the room and asked each person there for $1–and no one said no. And they were not handing out buttons.

How do we get three million people to give us $1?

The point of the exercise is more than the dollar, though. It gives us three million more people who have at least heard of NET and Walking with Jane.

The question is, how do we make this work? Obviously, mailings and credit cards are counter-productive–we’d eat up all the money raised in stamps and credit card fees–it almost has to be a door-to-door effort. But you may have other thoughts.

And of course, we won’t say no to larger donations. But the key needs to be three million people and three million dollars.

Clearly, I don’t expect to raise $3 million in three months–though that would be mind-blowing. But is that figure possible over the course of the 12 months that starts June 9?

Thoughts?

Looking over  my posts for the last week or so, I realized how depressed and depressing I have been lately. In the words of the old cliché, however, it is always brightest before the dawn.

Jane’s sister and I took a field trip to Dana-Farber today to talk with Dr. Matt Kulke, who heads up the Program in Neuroendocrine and Carcinoid Tumors, Sarah Church from the development office and two of the researchers involved in a piece of work that has led to what I can only say is one of four major new moves in the fight against NET.

I’d go into all four of those new developments here and now, but I really don’t want to steal the program’s thunder. That is why I have left the two researchers’ names above in the fog. Some of the work is well advanced and ready to go to press. Other pieces are in the editing and revision stage while another piece of news is just getting started this summer.

This much I will say: the information that will be released in the coming weeks and months ranges from one end of the research spectrum to the other–and all of it will create new knowledge and new understanding of the disease. Some of it will become the foundation for another wave of research that may finally give us enough information that we can start talking about the day we will cure this disease. Two parts of this research should be appearing on the Program website fairly soon. At that point, I will be more comfortable writing here about the details of that information.

I also got to see the living face of the enemy through a microscope today. There are  actually two different kinds of cells involved in this little nasty: a carcinoid cell and a group of feeder cells. All of them seem to float independently of each other, but I was told that the carcinoid cell does not grow in the absence of the feeder cells. It was not clear what the feeder cells are producing–but they are producing something that stimulates the growth of the carcinoid cell. One of the things they are now thinking about is finding a way to kill or remove the feeder cells even if the carcinoid cells cannot be killed or removed.

I cannot describe what it was like to finally see what this disease looks like up close. Externally, I remained the calm tactician and newsman. I asked the questions that would help me understand what I was looking at and listened carefully to what the scientists were telling me. I was thankful yet again that when I get angry, I get very calm and calculating. I need to understand this thing because we cannot fight what we do not comprehend and because I need to be able to explain things to the people who do not get the opportunities I get to see these things firsthand.

But as I looked through that stereo lens, I could feel the anger and the determination returning. I have come home tonight with a new resolve and a rebuilt spirit.

We’re going to kill this thing–and everyone can help.

Seventeen months ago today, I lost the other half of my soul.

I took flowers to her grave today. I took a second bouquet for her mother for Mother’s Day. While I was there, I ran into her cousin who sold us the headstone for the plot Jane shares with her mother. He remembered me, though I was so lost in my own thoughts it took some time for his name to come back to me.

Today was bad. Tears were never far away. I had meetings to prepare for and a dozen other projects I needed to work on. I am writing this just before 11 p.m. The will to work on stuff just never arrived. The day vanished into grief and attempts to escape from grief. I feel broken and old again tonight.

There is nothing pretty about loss. Movies and TV and plays make it seem easy the way they make recovery from major surgery a two or three-day affair. Some people subscribe to this myth that, magically, it all gets better after a year. For some, I suppose it does. That has not been the case for me. It has not been the case for a lot of the people I meet in grief groups.

I wrote yesterday about mortality–that we all die eventually. Eventually, about half of you reading this will experience what I am experiencing now. The one you love will die, and you will be the one left behind to deal with all the unfinished business and the grief. The emptiness on the other side of the bed, while it is a good image and decent metaphor, does not even come close to the reality. But it is as close as I have found to take you to the emotional state this is.

This will sound like a broken record. I have said this before, but it bears repeating: take care of your self. Go to the doctor for that physical every year and don’t hesitate about going in between if something does not seem right to you. Get the recommended tests at the recommended intervals. Make sure your significant other does likewise.

Tell the people you love that you love them–but more than that, show them that you love them: hold hands in public. Buy them flowers for no better reason than that it seems like a good day for that. Shower each other with love in every way you can think of–and then invent some new ones. Leave nothing that needs saying left unsaid at the end of the day.

Thirty-six months ago, the school year was winding down for us. Retirement was close enough we could smell it. Twenty-four months ago, Jane’s feet were getting swollen at the end of the day, but it didn’t seem like a big deal. Seven months later, she was gone.

Now, I try to organize fundraisers for the disease that killed her. I walk long walks with strange shirts on my back. And I stand at her grave on the tenth of every month trying to figure out what happened and why. The answers are all unsatisfactory.

I love her that much–and I miss her that much.

We are all mortal–or at least our bodies are.

I was forcibly reminded of this yesterday when I discovered I am mildly anemic–and have been for at least the last year. My red blood cell count is a tad low, as are my hemoglobin and hematocrit levels. Because I am a vegetarian, this is likely the result of a B12 deficiency, but could be one of a number of other things–some of them scary, others of them not.

For now, I will consciously be trying to get more B12 into my system. In a few months, we will do blood tests again and see if that has made a difference. If it hasn’t, then it will be time to start looking for a more serious cause.

I have been a bit careless with my diet since Jane died. Sometimes, I skip a meal. Other times, I consume whatever comes first to hand. Periodically, I make something elaborate. But where there was once joy in cooking or sitting down for a formal dinner, now there is only the reminder of Jane’s absence. It is not a pleasant experience, and part of my poor eating habits derive from willful avoidance of that experience.

The rest of my semi-annual visit to my primary care doctor went well enough. My cholesterol is under control, my triglycerides are well below 100 and my HDL has moved into the healthy range. Even my blood pressure is a happy camper.

But Jane’s numbers were great, too. We never know what is lurking down there. “Life,” as one group in central Pennsylvania puts it, “is uncertain: eat dessert first.”

I remember going out for a walk with my grandfather when I was in my early 20s. He was in his mid-80s and still walked everywhere he wanted to go. But he had slowed down over the last year and knew his heart had started to fail. It was a somber yet upbeat stroll. We talked about a lot of things, including what he hoped would happen with my grandmother after he died.

As we came up the sidewalk toward the house, he stopped and pointed out a bare spot in the grass.

“I don’t know if I will be here in the spring,” he said. “But I have some seed in the garage if I am.”

Jane lived the same way, especially that last summer and fall. She did not expect to live, but she had plans if she did that went far beyond beating her cancer. She had painting projects and cross-stitch projects and carpentry projects and writing projects–and none of it was a bucket list. It was stuff she wanted to do–just like my grandfather’s seeding project.

I don’t know where I will be a year from now–what the state of my mental and physical health will be. But there are seeds I am planting now that will need tending whether I am here or not. And more seeds I will plant then if I am here to do it.

I am facing a crisis of confidence today. I am wondering what the point of all this activity is. I am wondering if I

am really making any difference at all when it comes to NET. I am wondering if I am really making any difference in the Relay for Life of Greater Fall River. I am wondering if I just walked away from all of this if it would make any significant difference.

I get up in the morning and I work on cancer. I have lunch, then I do some more work on cancer. Tonight, I will have dinner and work on cancer some more.

Virtually every day, I write something for this site. On a good day, there are 60 views of what is here. On a bad day, we never get out of single digits. And those single digit days have been increasing as the weather gets nicer. I keep working to build an audience–as do the other folks working behind the scenes–but that audience does not fully materialize.

Dana-Farber now has the Program in Neuroendocrine and Carcinoid Tumors. Jane’s death had something to do with that. But a $1.8 million donation over the next three years from an anonymous donor likely has more to do with that than anything I have done. Yes, we have launched the Walking with Jane Dybowski Fund for Neuroendocrine Cancer at Dana-Farber. But we have had little success in raising money through it.

Yes, last year we raised about $30,000 for NET research and another $4,500 for cancer research generally. But we will be hard pressed to match that total this year from what I have seen so far. While our Relay for Life team will likely beat last year’s efforts, the NET amount raised so far has begun to worry me. We just don’t seem to be getting any traction there–and I don’t know how to fix it, despite all the workshops I have been to and all the conversations I have had.

I’d like to say that my being chairman of the Greater Fall River Relay is the reason we are ahead of last year. It isn’t. The fact is, I am largely a figurehead. I run meetings, give the occasional speech. But the real work is done by the committees–and I have never seen any group work as well as this one does. The truth is, this was an event that was ready to take off before I ever crossed the threshold.

People believe otherwise. At Dana-Farber, I get introduced to the heavyweights as though I have done the unheard of. People well up the chain of command at ACS actually answer my emails. And I don’t understand any of it. I have done very little.

I won’t stop doing what I am doing. I may sometimes wonder if I am making a difference. But as someone once said to me, the outcome matters less than the attempt.

I just watched an ad on television about National Pet Cancer Month. A pet food company is pushing for donations to find a cure for “this horrible disease.” They plan to raise $1 million this month and have already raised $250,000.

I won’t argue that cancer in dogs, cats, and other creatures is not tragic. But I will risk the wrath of PETA and pet lovers by pointing out that I have been working for a year and a half to raise money and awareness about NET. Over that time period, I have personally helped raise $28,000. Last year, all the efforts of all the foundations involved in raising money for NET research totaled, at most, $4 million.

I’m sure that pet food company will raise more than their $1 million goal. I am sure that over the next 12 months we will spend two or three times–at a minimum–more on cancer in pets than we will on NET and CS in humans.

Don’t misunderstand me. I love dogs. I like cats. My sisters had hamsters and birds and I enjoyed teaching the parakeets to talk and watching the rodents churn on their treadmills. Jane lost her dog to cancer as a young woman. I don’t wish ill on any living thing.

But it makes me angry to learn that we will likely spend more on solving cancer in animals than we will on the cancer that killed my wife. It makes me angry that in a single month we will raise significantly more to cure cancer in pets than all the efforts put in by the 950 Greater Fall River Relay for Life participants combined to cure cancer in humans over the course of this entire year–and far more than all my efforts to fund research into NET and CS over the last 17 months.

I have a hard time with the inequities in funding for human cancers. I don’t understand why breast cancer earns so much more research money than the next two or three cancers combined despite its smaller incidence than two of those cancers. I understand the politics of it and the marketing of it well enough. But I do not understand the morality of it. Similarly, I understand the politics and marketing behind the amounts spent on prostate cancer, but not the morality of it.

And as I have said before, I think research into breast cancer and prostate cancer and all the big-name cancers is important. My sister and sister-in-law would no longer be with us without the research we have done into breast cancer–and I am glad to have them both still with us on this side of the grass.

But I love my wife more than I can ever love either of those two women. And I love her more than I can love any cat or any dog–or any animal.

You can hate me for that. You can hate me for saying I would rather see money spent on unraveling the mystery of NET than on animal cancers. And part of me will understand why you feel that way.

But my wife’s life mattered more to me than anything else ever will.

My legs hurt tonight. Twenty miles is a long walk in the early spring when you haven’t had a lot of time to train.

But I now know that by September, I will be in shape to walk the 26.2 miles of the Jimmy Fund Marathon Walk. I know that by the end of next month, I will be ready to do the walking the Relay for Life of Greater Fall River will require. And I know if I had really needed to go beyond 20 miles next week, I could probably pull it off–not bad for a 60-year-old.

Walking requires putting one foot in front of the other–regardless of the distance. It requires being in reasonable physical condition. At my age, it means checking periodically with my doctor to make sure my heart is up to the task.

Ending hunger is complicated. It shouldn’t be, but it is. We produce more than enough food in the US to feed all of our people. We don’t. Part of it has to do with poverty. Part of it has to do with politics. Part of it has to do with things I know nothing about. If I can help raise awareness of the problem by joining with several thousand other people and walking an obscene distance I can cover, then it is worth the effort.

Ending cancer is even more complicated–and there is not a lot of hands-on stuff I am even remotely qualified to do. I am not a doctor, scientist or lab technician. I can read, I can think, I can write, I can speak, I can organize, I can walk. There are lots of people who can do at least some of those things–and lots who can do them all.

But there are not a lot of people applying those skills to NET cancer. Nor are there lots of doctors, scientists or researchers working on this thing. So I read about NET every day. I think about it every day. I write about it every day. I speak about it whenever I can. And I walk every time I think it will do any good.

We need more people doing the science that needs to be done. We need more resources to fund those people and the work they do. We need what they discover to reach the broadest possible audience.

So I keep doing what I can do. I read, I think, I write, I speak, I organize, I walk.

But alone, to paraphrase Helen Keller, there is only so much anyone can do–together, we can accomplish so much.

Please join us in the work ahead.

The Walk for Hunger is tomorrow. I have to be up at five and on the road by six. I have 20 minutes to write this.

The Walk for Hunger  is the day I discover how much more I need to train over the next few weeks to be in shape for Relay June 22-23. The 20 mile hike is largely flat and runs through some of the visually nicest parts of Greater Boston. Last year, we started just before 8 a.m. and finished around 3:30 p.m. There was not much left in the tank at that point, but it told me I could do the other walks I needed to do–the Marathon Walk in particular.

Tonight, I went to Field of Dreams Clam Cake Event to load up on carbs for tomorrow. Their Relay event went well–they sold out by 6 p.m. At least for now, they have taken a commanding lead in the friendly competition between their group and ours. We will tighten the gap again over the next month as our two major efforts take place: the Pasta Supper on May 30 and the Yard Sale at the Westport Grange June 3.

Fundraising events are going on across the country right now for local Relays for Life. In New England, we are also marching into the season for Jimmy Fund and Dana-Farber charity events. Spring, summer and fall are filled with events that are trying to raise money for causes that truly need all the help they can get.

So in between your trips to the mountains or the beach–or whatever else you do in the nicer months–take the time to stop at the local craft fair or spaghetti supper. As state and federal budgets continue to tighten, those seemingly insignificant 5K runs every town seems to have become more and more important to the organizations who rely on them to help fund their budgets and the good works they do.

The Walk for Hunger has nothing to do with fighting cancer. It helps to feed families across the state who often have to choose between eating and paying the utility bills. With the end of the school year in sight, many children will be losing the one sure meal they have each day: the school lunch they get for free because of their circumstances.

I know we all can’t do everything people ask us to do. But if we all do a little where we can, we all benefit.

I’m exhausted.

I’m physically exhausted. I left the house a little after six this morning to present at a journalism conference in Boston. I got home just in time to go out for a dinner meeting with the two people who are putting together a part of our on-site fundraising activities for Walking with Jane’s Relay for Life effort. Both the conference and the dinner meeting went well and were very productive. And the dinner meeting got me out socially into an environment that was different from many of the meetings I do. But it was a physically tiring day for all that the things that happened in it were positive.

And the physical taxation will continue through the end of next week and beyond as Relay gets closer and closer.

But I’m mentally exhausted as well. For the last several weeks, every day has involved a new set of mental puzzles that have needed to be resolved. We have two major Walking with Jane fundraisers between now and Relay. We have designed posters and tickets and worked through some of the logistical details of how to make those work. I’ve also begun the planning and thinking process for a number of events that will take place after Relay aimed at raising money for–and awareness of NET. And I’ve continued to evolve the reorganization of the house that is our home.

And I’m emotionally exhausted. Every fundraiser exacts an emotional toll because I am constantly aware of why I am doing them–and that I would not be doing them were Jane still here. Every move I make in reworking the house brings me into contact with things that remind me of Jane and her absence. Every meal I eat alone, every laundry I fold that includes only my clothes and not hers reinforces that.

I am tired in my body, in my mind, and in my soul.

But that exhaustion only solidifies my determination to find the answers to Jane’s cancer and all the other diseases that take people away long before they should be. I don’t want others to feel what I feel now. I don’t want others to look ahead and see this life that stretches on like the steppes of Russia in winter in the absence of the person they love.

I know we all die. I know I can’t change that. I know we all will suffer pain and loss. I know I can’t change that. But when death comes, I want it to be after a long and fruitful life–and I want the spouse left behind to know the time that remains will not be too long before they, too, find that final rest.

None of us knows the time we have. But I fully expect to live for many years yet. That time needs to be used wisely and well. So I will fight to find the answers to this disease in the only ways I know how. I will study and write and speak. I will put fire in the hearts of men and women and help fuel their quest for answers and cures. I will help to find the money they need to do those things with the gifts that I have.

And one day–perhaps before I die–perhaps not–Jane’s quest to defeat this disease will end in victory. And there will one less disease stealing people’s lives before they want to give them up.