I need some feedback on some things today–and I hope at least some of you will take the time to supply it.

First, I am thinking about new items for sale at our events this spring and summer. As some of you know, I wrote poems for Jane two or three times a year. I also have some poems on other things I have written over time. I am thinking about collecting those into a book at some point. Would there be a market for that?

Jane also collected a huge number of recipes over the course of our marriage. Would putting together the best of those into a cook book be something people would be interested in?

At a captains meeting we talked about putting together a collection of notecards with art from former students. Would people be interested in that?

We have a very simple wire and bead bracelet coming for the Greater Fall River Relay for Life event on June 22-23. Those will sell for $3 each. They did well at Bridgewater State’s Relay. What kind of demand for them might there be at Somerset? What kind of demand might there be at our June 3 yard sale at the Westport Grange?

Second, we have seen a sharp drop in views of this site over the last two months. Since this is our first year doing this I cannot tell whether that is because of the improved–unseasonably warm–weather or because of some flaw in what we are doing here. New posts to the other sections of the site do not seem to have much impact on the number of views. If I write nothing here for even a single day the numbers on all sections of the site plummet. But even when I write something lately the trend seems to be a continuing drop.

Numbers are also dropping on our Facebook page.

This may all be seasonal, as I said above. But if there are problems with the site or with the links on the site, I need to know about them. The only way to keep this operation moving forward is for people to let us know what the problems are.

If you have comments on any of the above please drop us a line

at walkingwithjane@gmail.com.

Thank you.

If you are a regular reader of these posts, you know I am engaged in a war on multiple fronts. I know some of you will object to the term “war”: there are no bullets flying, and the annihilation of our national identity and way of life is not at issue in our struggle against cancer in general or NET in specific.

But there are lots of casualties–ranging from the very young to the very old. And the impact of a single person’s struggle with cancer can have a dramatic impact on the identity of their family and the identity of their community. Jane’s case alone has changed lives in both positive and negative ways. When we lost her, we lost a strong voice against ignorance and intolerance. We also lost a strong presence whose influence on future classroom teachers we can never know. We certainly lost the books she planned to write every bit as permanently as we lost the poems Joyce Kilmer might have written had he survived World War I.

And we can say that about many others whose lives cancer has taken from us.

Her death has changed the trajectory of my life as well. The book on journalism I would like to write remains stalled virtually in the place it was when Jane’s decline began. My political plans are on hiatus–perhaps permanently. My brother, a Seattle police officer, and I have talked about PTSD–and the symptoms are there. Jane and I were battle-buddies in the War on Ignorance. And the cancerous bullet that killed her in our joint foxhole has left the bits of her life splattered on me to the same traumatic effect as a lead bullet to her body.

Ignorance is still out there: ignorance about other people, ignorance about war, ignorance about science and medicine and death, ignorance about so many things.

None of us can fight ignorance alone. None of us can fight cancer alone. We can try–but we will fail.

My hand may do the majority of the reading and the writing here, but this website is underpinned by a dozen other folks who make sure it works–and by the research of dozens of others in labs and clinics across the country–and across the planet–who are engaged daily in trying to figure out what makes NET tick and how to cure it. I am just a reporter–a columnist–trying to put a human face on a battle in a small village–a battle that may prove completely inconsequential in the long-term–or prove to be quite the opposite.

And I have no way of knowing.

What I do know is this: we need your help in order to be successful.

The Greater Fall River Relay for Life is off to a great start–and Walking with Jane, in terms of money raised, is way ahead of last year. But there are only ten of us on the team right now–and we are going to need a lot more physical help between now and the end of that campaign. We need people to help with putting on fundraisers. We need people to walk the track and man the site. We need people’s’ time even more than we need their money.

I launched my Jimmy Fund Marathon Walk Campaign two weeks ago. Last year, we raised over $4,300 for that event. My personal goal is to get to $5,000 this year. But I want to recruit some other folks to walk all or part of it with me this September. If my personal numbers go down as a result but more people raise more money, I am fine with that. The goal here is not about me but about giving the researchers the money they need to fight this thing.

And finally, we need help with this website. We need writers who can talk about what it is to have this disease. We need writers who are also researchers who can talk about their latest discoveries and their latest reasons to hope. And we need caregivers who can write about their perspective on helping a loved one battle this disease.

There is lots of work to do in this vineyard. We need more help to do it.

It is Easter Sunday. I had dinner with my in-laws. I watched a bit of the Masters golf tournament and listened to the Red Sox find a way to lose the same game twice. I have been to the cemetery, walked around the yard, and done some cleaning.

I enjoyed dinner and the company of my in-laws. But the cemetery left me engulfed in grief–and when I arrived home, the house was too quiet again–that quiet that reminds me Jane is not here and that I will spend another night without her to talk to. We would have talked through the Masters tonight, tried to decipher the status of the Red Sox, and reveled in the beauty of the daffodils. I would sit on the couch massaging her feet while we finished off the Sunday papers and planned our post-Easter hunt for decorative bargains.

I try not to hate anyone or anything. I try to understand that her death has set things in motion that will save the lives of others. But I know how Mary felt at the base of the cross after “It is finished” and before the empty tomb. And my hatred for this disease is unspeakable. My anger at the Congresses that eliminated funding for this form of cancer and then never came back to reconsider it for 40 years is unspeakable. My anger at my own failures to get her diagnosed sooner–and for all the mistakes I made before her death–is unspeakable.

I will be the first to admit that none of this is logical. Diseases lack intelligence–they do not choose their victims and there is no true malice in them. They are a force of nature–and even if we are successful at eradicating this particular cancer, it will not be the end of meaningless, painful deaths.

Politicians are politicians. They have intelligence, but that does not mean they know what they are doing. They act and fail to act based on reasons that seem adequate to them. We can wish for more intelligent people in those roles, but given the way campaigns are financed–the way we choose our leaders based on who would make a good drinking companion–we are not likely to do significantly better than we do now. I can dislike the results of our stupidity, but I cannot hate human beings because of it.

And logically I know I made the best decisions I could have made–made the best arguments I could have made–given what I knew at the time and given where Jane’s mind was at the time.

But the anger is still there. All I can do is to try to channel that anger in constructive ways. I cannot kill death–even with help. But perhaps, together, we can remove a few arrows from his quiver.

I don’t just want more birthdays for people with cancer or heart disease or Alzheimer’s–I want more days, weeks and years of productive, meaningful, and enjoyable life–period.

I have become a frequent visitor to a specific cemetery in recent years.

It began after Jane’s mother died. We would go out to breakfast on a Saturday morning and then, before going on with the shopping and the other errands of the day, one or the other of us would suggest going up the hill to where her mother is buried. If the weather were bad, we would not go–or if we did, we would not stay long. Sometimes, we would take flowers from the garden or a wreath or a garland with us on those special days in the calendar. And sometimes we took them for no better reason than the flowers were in bloom and we wanted to share them.

We did not pray there. Rather, we talked with each other. Her mother, Jane said, always enjoyed a good conversation and listening was one of her pleasures. Our trips there became less and less frequent as Jane weakened in the fall before her death. The Saturday before she went into the hospital, I visited there alone and–for the first time–wept there.

Then I put on my strong face and went home.

Right after Jane died, I tried to get there every day. Work and the cemetery hours did not always allow that–and the snow last winter seemed endless. But I trudged through every snowfall until I had recreated the path I first dug out.

I do not go there every day now. But Saturday has remained a sacred trip. Sometimes I go in the morning, as I did today. Sometimes I go in the afternoon. I take some flowers or, if I know the flowers will have held up, some water for them. I cannot abide the sight of her grave with nothing on it.

I prefer living plants to cut flowers except when the cuttings come from our gardens. This morning I took some daffodils and a couple of sprigs of forsythia. We liked to see the forsythia in bloom–and the daffodils–because they announced spring was here in ways the crocus could only promise.

The problem with leaving living plants is that people steal them. Last year I left a pair of Easter lilies, one for her and one for her mother, and they were gone before they bloomed. This year, a pot of daffodils and another of English daisies have vanished. When I arrived this morning, I more than half expected the hyacinths would have followed suit. But they were still there–just at the edge of blooming. Their scent filled the air as I worked.

I hope the vanished flowers have found a good home. I would have liked them for the beds here after they had flowered–but clearly someone had other plans for them. I like to think they grace some poor spirit’s house and that they have taken with them some blessing that will ease that person’s day in a way the theft has not eased mine.

We humans do not always think about the consequences of our actions for others. The world would be better if we did.

If science were the only thing involved in finding an answer to the riddle of NET we would, perhaps, already have found the answers we are looking for.

But there is more to the quest for knowledge than people in white lab coats working in laboratories. Those people have to be trained in particular disciplines, have to develop certain habits of mind. The labs they work in have to be equipped not just with glassware and optical microscopes, but with computers, electrophoresis machines, centrifuges, and a thousand other arcane pieces of equipment. Those rooms have to be heated and cooled in buildings designed to facilitate collegiality and communication.

And all of those things cost money–large amounts of it. In the absence of that money the people who would like to do the science have to also become fundraisers. They have to write proposals and then sell the ideas in those proposals through presentations and dinners and baseball games to those who have access to the money the research depends on. The dog-and-pony show has become as much a part of science as DNA sequencing or rocket motor testing protocols.

Every minute a researcher spends on glad-handing potential donors is a minute that cannot be used for thinking or doing experiments or analyzing data. It is a minute stolen from research and from learning.

If that were the worst of it, it would be bad enough. But big money often comes with its own set of science-corrupting problems. Much of the big money in medical research comes from pharmaceutical companies. That is not an entirely bad thing–their profit motive can provide a powerful stimulus to developing new therapies and getting them adopted. But their focus on developing a drug for a particular market can get in the way of the pure research that may lead to new and better treatments. Basic science is not always immediately profitable–for all that it is supremely necessary.

Gregor Mendel did not become wealthy because of his research on pea plants. But a whole world of seed-based wealth grew out of his experiments. Albert Einstein’s Theory of General Relativity made him a household name and fueled much of the modern world, but it did not generate much wealth for him personally. And Watson and Crick’s discovery of DNA brought them no great wealth for all that it has opened medical doors for the rest of us.

In our current circumstances, however, there is too little money going into basic research and development. That has always

been the place of government in the US–to encourage R&D. It is where the Internet came from. It is where the Worldwide Web came from. It is where the atomic bomb and the hydrogen bomb and nuclear power came from. It is where the moon landing and the space station came from.

But the politicians are focused on cutting the budget and on applied science. They want science they can point to the way they can point to a bridge or a courthouse. And they want basic research done on the cheap–if at all.

And that, my friends, brings us to politics–but that is a story for another day.

I get a wide range of questions about why I do what I do.

First, there are those who ask why I am so interested in the cancer that killed my wife. After all, people say, it is a rare cancer and it does not affect very many people. And nothing you do now will bring Jane back. There are more important things you could be doing.

Yesterday’s post provides a partial answer to that question. The more I learn about NET, the more I think this form of cancer is far more important–and far less rare–than we have generally thought it to be. And if I am right, then this work I have set myself will have an impact on a greater number of lives than much else that I could be doing right now. Jane’s death haunts me–but the lives of those who have this disease and are still fighting it also drive me. I want them to have the life that Jane and I were denied. And even if their numbers prove to be small, their lives matter.

Others ask me why I don’t then focus on just NET–why I bother with Relay For Life when the money raised there is not directed at NET. Again, yesterday’s post supplies a partial answer: I am not smart enough to know what piece of general or specific cancer research is going to fuel the next piece of knowledge about the NET puzzle. But the truth is larger than that. I sometimes feel like a cancer magnet. My sister and sister-in-law are both breast cancer survivors–in my sister’s case, a survivor of more than a decade from a late Stage III aggressive form of the disease. My brother had a nasty skin cancer some years ago. I have another sister and a very old friend who have both had their thyroids removed. I have a former student with cervical cancer–and another with Hodgkin’s Lymphoma. My wife’s cousin has battled cancer in multiple locations over the past several years. One of my oldest friends lost her father to cancer when she was still in junior high school. I lost a favorite uncle to cancer in the 1970s.

And I cannot count the number of students I have had over the years who lost fathers, mothers, sisters, and brothers to this foul disease. I cannot turn my back on any of them.

So why do I do the MS Walk, others want to know. Certainly cancer is a huge issue. But MS affects a smaller number than cancer does, they reason.

And that may be. But I watched an old friend’s sister descend into that disease in the early ’70s–watched it cripple her, cripple her marriage, cripple her husband…I have had several friends diagnosed with the disease, as well as my wife’s cousin’s son. It takes little enough to try to help raise the money to help find an answer to that disease.

I do the Walk for Hunger because I know what it is to be hungry. I have lived on ketchup soup and filled my belly with water so I would feel full despite the missing meals. During my college years, there was no such thing as the Boston Food Bank. I have known people who went without so their kids–or their brothers and sisters–could eat.

Buddha reminds us that life is suffering. But suffering can be alleviated if we all make a commitment to do what we can to help those in need. I know I cannot help everyone–but I will help those I can.

I hope you will, too.

There is a danger in being too tightly focused on a single issue.

Jane reminded me of that when she showed up in a dream early this morning. She wasn’t upset with what we have been doing with Walking with Jane, but wanted me to remember that in all things, but especially in science, one never knows where the next game-changing discovery is going to come from. My only real gift is in being able to see the connections between disparate subject areas.

Whether you prefer to see something supernatural in this visitation or the view that this was merely my subconscious kicking in to remind me that I have been overly concentrated on research directed entirely at NET lately is immaterial. What matters is that we sometimes need to look away from something in order to see it.

Two of the most important discoveries on NET in the last two years really came about because someone was looking at something else. The first was a large-scale autopsy study that was really not looking for NETs in particular and discovered those nasty little tumors

in just under one percent of the bodies. One percent seems like an insignificant number until you translate it into what it really means. In the US, one percent of the population translates to three million people walking around with undiagnosed NETs.

But do those cases all matter? Most NETs don’t do what Jane’s or Steve Jobs’ did: produce detectable amounts of a specific hormone or peptide. If most of the tumors are benign and inactive, it makes no economic sense to go around looking for them. Last year, we diagnosed about 12,000 active NETs. There are about 120,000 people living with those NETs. About 10-12,000 of those diagnosed patients die each year. Compared to lung cancer or breast cancer, those numbers are pretty insignificant.

Then I read about a researcher who was trying to figure out why some prostate cancers are more aggressive than others. His findings were pretty disturbing. In many aggressive cases of prostate cancer, there is an NET sitting in the same neighborhood. One of the more aggressive forms of lung cancer also has a NET component–as does a breast cancer.

A peculiar fact of the cancer diagnosis trade is that when multiple tumors are discovered, we tend only to biopsy the largest tumor–and we assume all the smaller tumors are of the same breed as the large tumor. There is a growing body of evidence that says this is not always the case. How often are some of those NETs? The answer is that because we don’t often check them, we honestly don’t know.

One of my questions continues to be, how important are NETs in causing other cancers to become more aggressive than they might otherwise be? And what other problems are NETs causing that we are not picking up?

In my reading of The Emperor of All Maladies, I am struck over and over again by how much trial and error has been involved in our search for cancer cures–and how little research was done into the way cancers work.

My recurring nightmare is that in our hit-and-miss search for cures for the major cancers, we have largely ignored what many think of as among the rarest of cancers. And in ignoring it for nearly 40 years, we may have been ignoring a factor that makes some cancers more aggressive than others–and more deadly.

My legs are tired this morning after last night’s Relay for Life at Bridgewater State University. It was an emotional night–these things usually are for me.

At the beginning of the Luminaria Ceremony, a 21-year-old talked about his father’s death this past December. The young man had lost his mother when he was seven and found himself his father’s primary support over the last 18 months of his life. I was 58 when Jane got sick. I was still 58 when we buried her. I know what the physical and emotional toll were–and I would never inflict that price on a 20-21 year old.

When I was in college, Ali McGraw starred in a film called “Love Story.” It was about a young couple and how they met and how they got married. Then, with their marriage still very young, McGraw’s character is diagnosed with cancer. At the time, I thought the film was awful–but most people were completely enthralled by the beautiful love story and its tragic ending.

I said at the time I had never seen a healthier looking dead person.

As much as I hated the film then, I hate it even more now. It paints such a romantic picture of death by cancer. And there is nothing romantic about the subject at all. It is an ugly and debilitating death that strips the victim of every dignity and leaves behind an empty, gnawed raw husk of a body that has had every reserve exhausted–a body that has devoured itself in a final effort to sustain itself–an effort that has benefited the cancer more than it has the patient.

And to watch someone you love die that way changes you–burns your own life down to its essentials. There is none of that in “Love Story” either. The author of the book the film was based on–a professor at Yale–later wrote a sequel about McGraw’s husband called “Oliver’s Story.” I can’t imagine he got that story any more right than he got the original–which I read at one point to try to figure out what had made it so successful.

As the student talked about his father’s death, my mind remembered Jane’s. I cried, I walked the Luminaria lap, I found the Luminaria I had made for Jane and bent down to touch it as I walked by. It was standing alone with a greater space between it and the bags to either side of it–as though she knew I would be looking for it.

And as I walked, the pendulum in my mind swung from the pain of sorrow and the pain of anger over and over again.

When I was in graduate school, we lost a student one November night. He had been out riding his bike and been hit by a pick-up truck. I remember wondering what kind of sadist God was to take that young and gifted teacher out of the world.

That death was quick and clean. Death from cancer is anything but. To experience it with someone you love is brutal–both for the one dying and the one left behind. And no novel or film can tell either story.

This is going to be a crazy weekend, filled with more causes–and more exercise–than a man approaching 60 cares to imagine, but that he is going to do anyway because it is the right thing to do.

Tonight I will be at Bridgewater State–my wife’s alma mater–for their Relay For Life as our first Walking with Jane franchise tries to hit the ground running. We will have the usual stuff with us: shirts, buttons, bottles, bracelets, bags and baked goods, but the students have some ideas of their own we hope will make a big splash. They have made blue zebra ribbon and a blue bead bracelet that is particularly striking–and that I am hoping we will be able to get them to make more of for the Greater Fall River Relay in June. And they have some uniquely college-appropriate items for a drawing.

If you are in the area tonight, the event starts at 6 p.m. at the Tinsley Center at 325 Plymouth Street in Bridgewater. I’ll be there likely until about midnight. Come by, say hi, and help the students get off to a good start. The event ends at 6 a.m. Saturday.

Sunday morning, I take on the MS Walk in Dartmouth with Sam and Josh and the other members of Team Deb Awesome August. The three-mile hike starts at Dartmouth High School at 10 a.m. Registration is at 9 a.m. MS is another of those truly nasty diseases I have seen way too many times in my life. Dartmouth is way behind their goal as I write this, so if you know anyone with MS, please join us Sunday morning.

That afternoon, I am off to Somerset’s Holiday Lanes to roll a few frames for the Stars of Hope Greater Fall River Relay for Life team. A former student who was the first to make Relay for Life a part of her senior project in one of my classes is part of that team and has been working like crazy to get the word out for this event, which runs from 2:30-4:30 p.m. If you like to bowl, this is a golden opportunity to enjoy yourself and help out a great cause.

Last night, I launched my Jimmy Fund Marathon Walk fundraising site. I will be walking with the Caring for Carcinoid team again this year. All the money raised by that team will go to fund research into NET/CS at Dana-Farber. If you want to walk but do not feel up to the 26.2 mile challenge, there are shorter options–including a ten, a five, and even a three-mile walk. My personal goal this year is $5000.

Of course, planning continues for  the Greater Fall River Relay for Life and Walking with Jane’s efforts for that, as well as some things we are not quite ready to talk about in detail yet. I hope you can join us for at least one of the events this weekend–and several more over the course of this year–as we continue to work to make cancer in general–and NET in specific–history.

Failure is a word we use too easily sometimes. That came back to me last night as I read an email from someone lamenting that they felt they had somehow failed to live up to others’ expectations–as well as their own.

I have spent a lot of time with that word the last few weeks as I tried to work my way through the latest phase in my ongoing struggle to come to terms with Jane’s death. It started as I began going through our books and papers as I prepared the first room for painting–and has continued through every project since.

The latest blow came as I was clearing off a bookcase in what was Jane’s craft room. I came across a clipping from the fall of 2008. The subject was what to do, legally, after someone dies. She had folded it up neatly and placed it on the shelf where  she had to know I eventually would find it.

I scanned through it and realized I had hit everything on it–then set it carefully aside, as I do with all of the messages she seems to have left for me. Then it struck me: that clipping was a full year older than her battle with the H1N1 flu–18 months older than the beginning of the problem with her breathing and her legs.

Did she know even then she was dying? Should I have pushed her harder about seeing doctors? Did I fail to see something I should have? Not that I did not get her to go to her primary care physician–but should I have pressed her harder about seeing a specialist–about getting a second opinion?

The logical part of my mind knows I did all I could. But the emotional side keeps telling me I failed her.

Then there are my failures when we had a diagnosis. I did all the things they tell you to do–to be positive and upbeat, to visualize her getting better; I chanted, I prayed. I stayed strong for her every minute of every day. When she got angry over how long her recovery was taking, I did everything I could to buck her up.

Twice she went into a coma. Twice they told me she had a fighting chance. Twice I let them call her back from the edge of death. Part of me sees my decision to call her back as a failure–that I should have let her go the very first time.

But we all thought she had a fighting chance–and the decisions I made I made based on the best information I had at the time.

It is all any of us can ever do. Sometimes our decisions lead to success. Sometimes they lead to something else. Success makes us feel good–failure forces us to think and to learn. Sometimes failure is more important in the long term than success is.

Sometimes failure is the foundation success is built on.

But it stings all the same.