Norman Corwin, who died yesterday at 101, and I never met. But there are only a handful of people in my life who exerted as much influence.

I can’t say when I first heard his voice. It may have been in the 1950s. But I heard his voice and his use of words throughout junior high and high school. To say he had an enormous impact on my writing and speaking voices would be an understatement. It was through his work that I first discovered that cadence and the sound of words were every bit as important as their meaning in both written and spoken form.

Martin Luther King, whose memorial was dedicated this weekend, was a better public speaker, perhaps, but it is more often Corwin’s voice I hear in my head when I am composing something–and when I am speaking off the cuff before a group I model the use of sound and cadence on both of them. But I am less than a pale imitation of either one.

Both men also had a great influence on the development of my thinking processes. They made clear to me that there are no simple solutions to any social issue–and underlined the importance of even the smallest voice in the life of civil society. King filled me with the power of vision and dream, but Corwin taught me the importance of doing “a little civil thinking every day,” and a little social acting. Sometimes we get caught up in the importance of the Obamas and the McCains and the Bushes and Clintons and Reagans. We forget the true power of the individual–and the importance of the ordinary citizen.

Jane’s story is that story–the story of the quiet individual who never becomes famous in life but through whose actions much good comes.

On May 8, 1945–VE Day–Corwin’s On a Note of Triumph aired on CBS Radio. I had not listened to even part of it in years–I am not convinced I ever heard the whole thing without interruption before today. By the end my face was wet with tears–but my heart was filled with hope.

I know our lives are busy. We lurch from sound bite to sound bite, from errand to errand, from class to class, from patient to patient. But take an hour today. Go to the NPR archive where the tape of that broadcast is. Sit yourself down and just listen to the story. It has a second or two that ring a bit too bright-eyed–a bit too hokey–but most of it could have been written today–and is just as important today as it was then.

And what it says is something we all need to hear–and remember.

Serendipity is an amazing thing. You start out looking for something to print a quiz with and meet the woman you will marry. You apply for a job and drive by the house you will buy even though the job doesn’t work out. When you go looking for something, you never know what is going to turn up.

Serendipity comes in many forms. Last night I wanted some information about two drugs used in treating NET. I recognized one immediately but the other did not ring a bell. So I went looking. Eventually I found what I was looking for–but along the way I came across something else.

I happened upon an article from OncoLog at the University of Texas’ MD Anderson Cancer Center from March of 2009. In it a Dr. James Yao says NETs may be much more common than we think.

“(I)n two large autopsy series of more than 15,000 people each, carcinoid tumors were found in about 1% of the people,” Yao said in the article. He went on to say that in another study of autopsy results pancreatic NETs were found in one of every 1000 autopsies.

He also pointed out

a five-fold increase in NETs between 1973 and 2004. “If you look at prevalence within the realm of gastrointestinal neoplasms, neuroendocrine tumors are second only to colon cancer. They are actually more common than stomach cancer, pancreatic cancer, esophageal cancer, and hepatobiliary tumors,” Yao said.

I have not read the original studies he talks about. But given his background and where he works, I will accept what he says as true.

There are currently just over 312 million people living in the United States. If Yao’s figures are correct, there are three million cases of NET in this country.

We only know about roughly 120,000 of them. That’s less than five percent, if I am doing the math right.

Many of these tumors could be functionally inactive–meaning they do not produce hormones. And most NETs do grow very slowly. But if we are only uncovering five percent of all NETs I am not sure if it is statistically safe to draw any conclusions about what percentage of NETs are functionally active or inactive. We can know what happens in the cases we diagnose, but we have no way of knowing what is happening in the cases we cannot see.

Sometimes in recent weeks I have thought about NET as an iceberg. But an iceberg is two-thirds below the surface. With NET, 95 percent of the cases may be below the surface.

By contrast, there were about 290,000 cases of breast cancer diagnosed in the US last year. Imagine that we only diagnosed five percent of those–15,000 cases.

That’s where we may be with NET.

Scary thought.

The more we know the more we know how little we know.

The further I travel into this land of neuroendocrine tumors and carcinoid syndrome the more I am reminded of that fact. We know much more now than we did 14 months ago when Jane was first diagnosed. I know far more than I did, but so do the doctors and researchers who do this for a living.

But there are many doctors out there who still have not heard of NET. And there are thousands of people out there with this ticking time bomb in them who are being diagnosed with something else because that is more likely than NET. Just because we know more does not mean what we know is getting into the hands of all the people who need it.

Today I got a look at a draft of one of the stories Phil is putting together for the series on NET we are going to make available to news outlets next month. It is a moving piece filled with human emotion and the power of a person who has made the choice to stay positive in the face of cancer. It puts another human face on this disease.

The day before Phil did the interview for that piece, Becky interviewed Dr. Richard Warner, one of the founding fathers of NET research, about his work and what inspired him to get involved with NET. She, too, seemed moved by her experience and told me she started working on the piece on the bus back into New York City from White Plains.

Students at Westport High School are designing t-shirts to remind people who Jane was and what took her away from them. Another student is basing her senior project on NET and Carcinoid Syndrome.

Two weeks ago I met with a young woman Jane and I had in class a decade ago. She is fighting a cancer of her own but is designing a piece of jewelry for Walking with Jane to raise awareness about NET.

And day by day, we piece together more stories about NET, the people who have it, the people who fight it, the new information that emerges.

And gradually we make this cancer real for the larger world. We put faces on the patients and their caregivers. We put faces on the doctors and the researchers. We put faces on the living and the dead.

Because people care less about a faceless disease than they do about the people it affects.

NET is a very complicated puzzle.

I figured that out within days of Jane’s diagnosis based just on how hard it was to figure out she had it.

But every few days since I have found a new wrinkle in the disease that makes it appear even more complicated–at least in terms of finding a cure and finding a way to get quick and accurate diagnoses

Since Steve Jobs’ death the Internet has been flooded with stories on pancreatic NET. Most are pretty repetitive–if you’ve read one news article you have read most of them.

But I read each one anyway because I never know when someone will say something that sparks something new. That is what happened Saturday morning. I was reading a piece on pNET when I came across a list of the different kinds of pNETS. There are seven different types of NET that form in the pancreas. Each produces a different hormone or peptide–and each results in a different set of symptoms.

The human body creates nearly 70 different hormones. An NET can create excess quantities of almost any of them. And each is going to create a different set of symptoms if there is an excess amount of it.

And the tumors can form just about anywhere. There are lung cancers that are carcinoid–that produce

hormones. There are carcinoid tumors that form in the breasts. There are carcinoid tumors…well, you get the idea.

How often is an NET in the lung written up as lung cancer instead of as an NET? How many more cases of NET would there be if all those were recorded as NETs instead of lung cancers? How many cases of carcinoid breast cancer are miss counted the same way?

How many cases of NET are we counting as something else? How frequent is this disease–really?

I have a sneaking suspicion we really don’t know.

There are potentially dozens of possible symptoms–any of which can look like something else that is more common is causing it. And the symptoms often come and go, making it look even more like it might be something else. Often, you don’t realize there is a big problem until it has spread into the liver.

And even if you do realize you are looking at an NET, you still have to find it.

I don’t say all this because the situation is hopeless. We have tools today we did not have even five years ago. We know far more today about the disease than we did even a year ago.

But finding a cure for a disease this complicated is likely not going to be easy–or cheap.

And $3 million a year–my most optimistic guess of what we spent last year–is not going to cut it.

One of the challenges of writing this kind of thing every day or two is the sense of functioning in a vacuum. I can check the site stats and see that people are reading what is here but I get very little feedback about the impact of the words I write beyond the occasional Facebook post that says something along he lines of “that was beautiful.” But whether or not these scribbles are having the effect on people I would like them to have is not easy to tell.

And it is not like we haven’t set up a way to get that information. The Forum section of this website exists so that we can have actual conversations about what is on the site and what is going on in the NET world–both among patients and caregivers and among doctors and researchers.

A major point of this whole enterprise is too raise awareness about NET and get people talking about ways to fight back. I want people to know about the funding issues. I want people to know about the struggle people with this disease face. I want people to know about the struggles researchers and doctors face in trying to find ways to fight this disease.

And I want to give those who are new to this disease easy access to the information they need about what the latest research says so they can be active patients in their own treatment.

Becoming your own advocate is incredibly important with a disease like NET. Most doctors don’t even know the disease exists. Those general practitioners who know about it at all have very often only learned about it because of a patient they have had who was diagnosed with the disease.

And this is very much a disease where what you don’t know can kill you.

We all need to be more than passive consumers of information. If cancer in general matters to you, you need to do something about it. That may mean getting involved with Relay for Life or the Komen Walk for a Cure, or any of the many other programs out there.  If you are concerned about NET you need to find ways you can help with that through things like the Marathon Walk, the Pan Mass Challenge, or any of the other campaigns that work to raise money for that.

But we all need to do something about the things we care about. Otherwise, for all the ability of technology to get the word out there, nothing will change.

I had hoped to have two major initiatives get off the ground for Worldwide NET Awareness Day on November 10. It increasingly looks like only one of those things will happen simply because there is only so much we can do at one time. I had hoped to create an event at local malls this year called Mall Walking with Jane. It would have taken place in malls either during the time before the stores opened when the malls allow people to use their common space for walking or over the course of the day.

Unfortunately, I hatched the idea too late for the slender resources we currently have to pull that off in the time we had. It looks like the kind of event that will take several months to pull together in the way I want it to happen. And I don’t want anything we do to ever come off as less than professional.

But the second initiative is making great headway. By November 1 we should have available the first stories in a series of articles for newspapers about NET that are aimed at raising awareness of the disease. Yesterday, Phil Devitt spent the day in Boston interviewing a patient at Dana-Farber and people at the Caring for Carcinoid Foundation for two of the stories we have planned. He has been working for weeks on an overview story that covers what NET is and where we are in terms of research and treatment of the disease.

Later today Becky Martins will interview Dr. Richard Warner, the founder of Carcinoid Cancer Foundation–the oldest of the foundations working on this disease–about his work on the disease and how he got involved with this hard to diagnose cancer.

Three pieces are already in the can: one by Katie Dupere on the reason Walking with Jane exists, one by Meg Allen Flanagan on Jane’s life and her impact on her students, and one by me on how NET often masks itself in the symptoms of IBS.  Versions of hose stories are already in use in different locations on this site. I still have an op.ed. piece to write–which I have struggled with for weeks.

All of this will shortly be available on a new page called Press Kit. That addition will require some changes in how the site is set up. The design team is discussing the issues the expansion requires us to resolve.

But we could really use some help getting the word out to newspapers and magazines about the availability of these articles. I have put out the first of a series of press releases advising print and internet news organizations about the package’s availability but have thus far had only a limited response. If you are engaged in the news business–or know people who are–please spread the word.

If we are going to finally beat this disease we are going to need everyone’s help we can get.

There are days I just want to scream.

This is one of them.

There is no good reason for it. In fact the day started fairly pleasantly. I dreamed–for only the second time since her death that I can remember–about Jane. We were walking down a city street. I had to stop to do something and she continued walking because–as she said–she was moving slowly these days and I would catch up.

I did catch up and we turned down another street. She asked if we could sit down and rest a bit, so we did.

And then I woke up. There was nothing sad about it. It was really quite pleasant. No cause for tears–and I did not shed any. I just lay there in the comfort of it for a while.

I got up, showered, and put myself together for the dentist. Then I sat down for a bit and answered some email and put together the agenda for the Greater Fall River Relay for Life Planning Meeting I have to chair tomorrow night.

But all the while there was this thing in the back of my mind. I had a friend going in for surgery today–cancer surgery. It is the kind of thing that puts an edge on a day–knowing someone is facing that kind of thing. And in the 11 months since Jane’s operation that edge has been even sharper.

I went to the dentist. They filled two teeth with a new kind of filling that is supposed to bind the tooth together, unlike the wedges of the old amalgam things that gradually split soft teeth like mine in half. I marveled at the procedure and how far dentistry has come over the course of my lifetime.

We have come a long way in the treatment of many forms of cancer over that time period as well. But there are too many we just have no good handle on. Part of it is money. In a world of finite resources, choices have to be made. Intellectually, I get that. Emotionally…well, that is something else again.

The weather had turned raw by the time I got back from the dentist. I looked at my outside chores and decided this was not a day to be standing on a ladder with the back blast of a power washer soaking me to the skin. I ate lunch. Thought some more about my friend’s surgery and decided I needed to go to the cemetery to water the flowers I put on Jane’s grave two days ago to mark the tenth month since her passing. I had gone out to the cutting garden on Monday and taken some of every kind of flower she loved that was in bloom. I had stood by her grave after I arranged them and wept.

I pulled the watering can out of the trunk when I got there and filled it with water. The flowers had, indeed, been thirsty. After I filled the vase, I stood there asking the why questions I always ask on gray days. Even on sunny days the answers are never satisfactory. I cried again, then got in the car and came home. I tried to watch a comedy film, but the jokes fell flat.

I had dinner, did my dishes, and took the short walk down the hall. I composed a letter for the Divisional President of the American Cancer Society and sent it off to one of Jane’s doctors who has promised to add a couple of paragraphs. I answered some more e-mails and thought again about my friend. I will hear nothing before tomorrow. I will hope the news then will be good.

But the unfairness of it all grinds at me. My patience is worn to onion skin.

Why this one and not that one? Why this good one while that one who beats his kids lives to a ripe old age?

The Buddhist in me chides, “Life is suffering.”

I scowl back like an angry child. Then I soften. Life is life.

I will sleep tonight. Tomorrow, I will get up. I will plan the day ahead. I will make slow progress on the work we shared–and on the new work this new life requires.

There are cancers out there–literal and figurative–that need to be fought and brought to bay. The battles may make me scream some days but who can really tell the difference between a scream and a war cry?

Derrick Bell, who died this week of NET–his obituary called it carcinoid cancer, yet another name for the same cancer–was not as big a name as Steve Jobs, but he was arguably every bit as important in shaping the world we live in.

Bell was a lawyer. During the early years of the Civil Rights era he was hired by the US Justice Department’s Civil Rights Division. He was told he had to give up his membership in the NAACP because that was a conflict of interest.

He resigned instead.

He became the first tenured black law professor at Harvard. In 1990 he went on unpaid leave to protest the lack of tenured black women at the law school.

In the early 1970s he wrote Race, Racism and American Law–a text still used in law schools today.

The world we live in today racially bears Ball’s stamp every bit as much as the technological world we live in bears Jobs’ stamp.

Three lives: Steve, Derrick, and Jane. All three influential in their fields–in many ways far more influential than single human beings ever are.

And all three dead from the same virtually unknown, under-funded, miss-understood and miss-diagnosed disease.

What would any of them have done with another even ten years of productive life? How many more lives might they have changed?

Who else is out there with this same undetected or miss-diagnosed disease? What will we lose if we lose them?

My mind keeps going back to the young woman on the Marathon Walk. Less than two years out from major surgery she walked the entire length of the Boston Marathon. That bespeaks enormous will-power. What, given time, will she accomplish?

Her advantage is she knows what she has. But there are thousands out there who have no idea they have this deadly thing in their bodies. They have been told they have IBS. They have been told they have anxiety. They have been told they are menopausal. They have been told it is all in their heads.

But the timer on that bomb continues to tick and tick and tick.

We need better awareness among primary care physicians. We need better availability of the tests we have. We need better–more reliable–tests than the ones we have. And we need therapies that are better than the ones we have for those who are diagnosed too late for surgical intervention.

I am surrounded by cancer this week.

Tuesday I went scouting for Relay for Life site alternatives in case there are problems in Somerset. (There will not be, according to their superintendent.) All of us had a cancer story–including the death of a close friend of the outgoing chairs who died of NET the week after Jane. We all have a reason we Relay that touches our souls.

Wednesday night, Steve Jobs died of NET–but it could have been Jane all over again. Images of her last weeks superimposed themselves on his death. I know with ungodly precision what his wife experienced in recent days. Her 18 years were likely not enough in the same way that our 21 years, three months and eight days were not enough. And nothing prepares you for the end of this particular cancer.

Thursday I buried myself in writing a press release and trying to expiate my anger at the unfairness of it all. As one of my former students put it so poignantly on Facebook, we have lost two great minds to this disease in less than a year.

I went out to coffee with an old student this morning. Part of the conversation was about the fact she is going in for cancer surgery next week.

I came home this afternoon and decided to go for a walk. My neighbor was out fixing a flagstone on his front walk. One year ago he was in rehab and undergoing treatment following his operation for kidney cancer. The neighbor across the street is a bladder cancer survivor.

As I walked on down the street I thought about my uncle, who died of spinal cancer in the 1970s, about my downstairs neighbor when I first started teaching who died just before Christmas from lung cancer, about his wife who died of another cancer–she never told me what it was–less than two years later.

I remembered my friend in graduate school who was diagnosed with lung cancer just before we started classes–and who, during our second year, ate nothing but ice cream because that was all her body could handle. I remembered another friend in graduate school who had fought off leukemia but worried about its return.

I remembered visiting our downstairs neighbor during her chemo treatments for leukemia–and remembered far too vividly the great hacking vomiting spells she went through in the middle of a conversation–and how she picked up the conversation as though nothing had happened when the spasm had passed. And I remembered our last visit to her the day before she died and how she had seemed to shrink into herself in the time since we had last seen her.

I remembered the tears on the faces of all the students we had who had lost mothers to breast cancer–and fathers to a half-dozen other kinds of cancer.

But I also remembered the smile on my sister’s face at Christmas last year when she could as easily have been dead more than a decade ago from breast cancer. And the smile on another friend’s face who could have suffered the same fate at the hands of the same disease. I remembered the smile on my brother’s face, who could be gone from skin cancer. I remembered the smile on my sister-in-law’s face last week, who could be buried right now next to my wife but for the progress we have made in detecting some cancers early.

We have made progress on killing cancer. There are more five year survivors than there were 20 years ago or 40 years ago.

Some cancers, like the basal and squamous skin cancers I have taken off my face periodically, have become no more of a concern than the common cold. The only time I mention them is to remind my students that they need to stay out of tanning salons and wear sunscreen when they are going out in the sun. I joke about my annual trip to see what part of my face they are going to hack off this year.

But for others, like NET and pancreatic cancer, we are little better off than we were 30 years ago. They are still killers, still cancers that the only question, in too many cases, is, “How long do you have?”

So I walk. You come, too.