I taught high school journalism for over 30 years. The last eight we put out the only daily high school newspaper in the country. We did it in a school that had no business doing that. We were too small, too poorly funded, and the best students in town went to private schools in droves.

When I arrived there in the mid-’80s from another small school, but one with deeper pockets where we had built an award-winning paper in five years, people wondered why I made the switch. I told them I liked challenges.

But they still laughed when I told them we would build the same kind of success.

They laughed when we moved to weekly, to twice weekly, to daily.

They always stopped laughing when we succeeded. They always started up again when we announced the new challenge.

The kids never laughed. They believed.

They believed at the start because of the accident of a song. They believed at the end because they had the evidence of their eyes and the evidence of their experience.

At the beginning of my career the nights putting out the paper were long. One kid could not stand the silence. He took to bringing in his stereo and his records. And as we worked the music in the background built a strange level of camraderie. As we collated papers one night the kid put on Neil Young’s “Sugar Mountain.” It became a theme song for their lives.

And for mine.

My first principal told me I had no white knights on that newspaper staff. He was right. My first production manager was suspended for 30 days for possession of marijuana on school grounds. We survived that month without him.

And somewhere in that month he became a white knight. The other students were transformed as well. It became our tradition to take the kids no one else wanted and transform their lives.

When I moved, I took the song and the tradition with me.

And then I met Jane, who often referred to the students no one else wanted as “her people.”Together we set off to change the world one rejected child at a time.

Oh, we had our white knights–the kids my German teacher once told me would succeed no matter what you did to them. But there was a special joy in reaching the ones the schools termed “at risk,” who felt the schools had abandoned them years before.

We made a difference in their lives.

And then the ultimate black knight arrived in the form of NET cancer.

On the last day of what would be Jane’s last year in the classroom, one of her students came up to her and said, “I know there were days when you were not well and could have stayed home–should have stayed home–but you came in anyway. I want to thank you for that.”

Jane was not given to easy tears, but they welled up in her eyes when she told me that story.

We fought the disease with every resource we could bring to bear. We believed every minute–up until the final day–that she would defeat the cancer. The courage of that fight–and that belief–changed the lives of still others.

Finally, the only way to kill her cancer was for her to die and take the cancer with her. She went out on her terms.

We did not know then what I have learned since–just how badly the deck was stacked against us. But even if we had, we still would have fought the battle. Either you believe you will win or you don’t.

The Bible says when people marry they become one. I can’t say that is true of every marriage, but for us, it was: we were one soul in two bodies.

That soul chose its next mission the day her body was diagnosed with NET.

We have faced long odds before. We have faced doubt before.

We will find a way to kill this cancer.

We will find a way.

NET has been the Rodney Dangerfield of cancers–“It don’t get no respect.”

But that seems to be changing–at least a little bit. After Steve Jobs’ death earlier this month it seemed like every newspaper and TV station in the country was determined to call Jobs’ illness pancreatic cancer. Even the head of one of the major pancreatic cancer foundations was quick to jump on the bandwagon. And I can’t blame him: Jobs’ cancer being labelled as pancreatic cancer was probably good for the people raising money for that dread disease.

But pancreatic cancer and an NET forming in the pancreas are, as I have said before, two very different animals.

The major media have begun to go back and correct themselves in recent days. The Boston Herald, for example, ran a piece quoting both someone from Dana-Farber and the Caring for Carcinoid Foundation about the difference between the two. 60 Minutes did a good job this weekend in making the distinction when they interviewed Jobs’ biographer.

But they still do some things that are bothersome. If I read one more time about NET being a good kind of cancer to get or how its slow growth rate is a good thing I may lose my mind.

I suppose basal cell skin cancer is a good cancer to get. Treatment is pretty straight-forward  at this point–and it is difficult to die from it. But other than that, I can’t think of a cancer that is even remotely a “good one to get.” And NET is absolutely NOT a good one to get. Yes, you can live a long time with it–but the quality of that life may not be something you’d like to invite into your existence. I can’t tell you the number of times Jane curled up in a ball fighting the painful gas and bloating the disease produced in her on a regular basis for the last 30 years. Nor was her constant insomnia a pleasant  experience for her. And the constant flushing and hot flashes from her late 30s on were not something anyone would want to endure. And let’s not forget the anxiety attacks (see managing anxiety attacks), the fading of people’s voices, the frequent bouts of diarrhea, etc.

And never mind the things caused by the heart disease that was triggered by the tumors in her liver  over the last eight months of her life.

Another reason this is not a good cancer to get is the difficulty in diagnosing it. The average person who is diagnosed with the disease goes through three wrong diagnoses over an average of seven years before someone figures out what it is–if they figure it out at all.

Assuming you do get a correct diagnosis, this is still not a good cancer to get because–unless you catch it early–and almost no one ever does–it is a cancer that has no cure. All we can do is manage the symptoms–and the drugs we have do not do a tremendous job of that a good percentage of the time.

Finally there is the  slowness with which NETs grow–another supposed reason this is a good cancer to get. But that slowness is part of the problem with curing the disease once it gets beyond the initial stage. Both chemo and radiation therapy attack cells that are growing fast. Because NET cancers grow at close to the same rate as healthy cells, traditional radiation and chemical treatments don’t work very well–or, in most cases, at all. The only workable option–for now–is surgery. But the long term success of that surgery is dependent in large part on when the disease is detected.

I’m glad the media has begun to distinguish between pNET  and pancreatic cancer. It’s a step in the right direction. But we still have a lot of educating to do before NET cancers get the respect they deserve.

The American Cancer Society bills itself as the official sponsor of more birthdays.

And I get it. Birthdays are a big deal. I don’t know why it was so important to me that Jane not die on her birthday–or just before it–but it was. It makes no logical sense to me–but the desire for at least one more birthday was visceral.

But curing cancer is about more than birthdays.

I went grocery shopping today. It was a chore Jane and I always did together. We both hated doing it–but being together made it better. We need an official sponsor of more grocery shopping done together.

Yesterday I did the beginning of the final fall yard work. I mowed the lawn, pulled up the soaker hoses we use to water the garden and the foundation plantings, and took down the hanging baskets. It was a job we always did together. We need an official sponsor of more yard work done together.

Tomorrow I will do some house cleaning and hang some pictures. It is supposed to be rainy, raw, and miserable–the perfect kind of day for doing some of the organizing I have in mind. We need an official sponsor of more indoor chores done together.

Also tomorrow I have a new set of shelves I have to build for the kitchen. We need an official sponsor of more home improvement jobs done together.

I also have to decorate the outside of the house this weekend for Halloween. We need an official sponsor of more decorating projects done together.

On Monday I expect to have 150 or more trick-or-treaters coming to the door. We would dress up for the night and hand out the candy together. We need an official sponsor of more holidays spent together.

Life is about more than birthdays. It is about all the small moments in every singular unimportant day. It is about the morning hug, the freshly made breakfast, the off-to-work kiss, the lunches and dinners together, the curling up on the couch in each others arms, the shared laughter, the shared tears, the shared joy and the shared anger, and the little end of the day rituals that finish with the final kiss good night.

For the American Cancer Society that sponsorship of more birthdays is symbolic, I assume, of all that. But it is easy to get caught up in the joy of more birthdays and lose sight of the fact that life is about more than birthdays–or even holidays.

So call us all for what we would like to be: the official sponsors of more living.

I am amazed by how quickly things can sneak up on me.

Worldwide NET Cancer Awareness Day is just a little over two weeks away. A year ago, people were getting ready for that November 10 date for the first time. Jane and I did not know it was there. We were too busy fighting the last rounds of her struggle, though we did not know how close we were to the end at that point.

A year ago on November 10 we were getting ready for what would be our final trip to Dana-Farber together. The day after that visit we got the call to get to Brigham & Women’s for heart surgery on Monday.

This year, I will be alone–no matter how many people I am with. It will be the 11 month anniversary of the day I lost my warrior princess. I will drive to the cemetery, put flowers on her grave, and add another stone to the cairn I seem bent on building there. The weather may be cold or raw or snowy–it will not matter. It will be part of my observance of that day.

On that day I hope many newspapers will see fit to publish the stories we are working on to raise awareness of this vile disease. And if they choose to do stories of their own–well, that is fine, too–so long as they get the facts right. I will post the first of those early next week, I hope–and if papers want to use them early, that will be fine as well.

The bottom line is I want everyone to know about this disease. It has hid in the shadows too long–like a vampire waiting to suck the blood out of its next unsuspecting victim. I want this thing staked and turned to dust the way it turned my wife to dust–and left me with nothing but the taste of dust and ashes in my mouth.

You can help shine a light on this disease in the coming weeks. Go to www.netcancerday.org and see what you can do to help spread the word. On November 10 that site will be updated with new videos all day long. You should also check out and like www.facebook.com/netcancerday.

You can also sign the official WNCAD proclamation at netcancerday.org/resources/proclamation/. Last year that document got 5000 people signed on. We are aiming at 10,000 this year.

You can follow the event planning on Twitter or put together an event to raise awareness.

There is even a global press kit available.

For me, November 10 is going to be a difficult day. It is going to be a difficult day for those who are where Jane and I were a year ago.

But I am going to do all I can do to raise awareness of this disease that day. I ask all of you to do what you can to accomplish the same mission.

This disease needs to die. We have to be the ones to kill it. And the first step is making sure people know the difference between the sound of a horse’s hoofbeats and the sound of a zebra’s.

Not everything I read or view on NET ends up being posted on the resources pages here. Often there are several pieces on the same piece of information. In those cases I pick based on how clearly the information is related. Other times I eliminate a piece because of factual errors. Those are more frequent than I would hope. As someone who was in the journalism business for many years, that kind of thing really bothers me. And I am not about to knowingly spread any kind of misinformation if I can avoid it.

I read about a dozen pieces every day. I probably view a half dozen videos a week. I learn new things about this disease all the time.  Sometimes what I learn makes me smile because we are making progress. Sometimes it makes me angry because if we had just known then what we know now I would not be facing what I am facing.

And sometimes what I read moves me to tears. Those are the stories about the people who are living with NET in any of its many forms. Or who have lost someone after years of struggle.

Last night I watched 60 MInutes. They did a piece on Steve Jobs and interviewed his biographer. He talked about the last conversations he had with Jobs. He talked about how Jobs was determined to beat his cancer–how he talked about what he would be doing in another year.

I heard Jane in what he said. I often hear the same thing in the voices in the stories I read. Patients have so much hope. Some with good cause.

And then there are the stories that make me want to scream: the stories about the patients whose doctors misdiagnose them, then tell them this is a good cancer to have–that surgery will cure them, even when the disease has spread.

The truth is there are a handful of places patients can go that practice the kind of team medicine this disease requires–that have the knowledge about what the latest and best standards of treatment are–that are honest enough to tell patients that there is no cure and that all we can do is slow it down and hope the time we buy by doing that will be enough to reduce it to a chronic and manageable condition by the time they need it to be.

Even that is going to be a complicated bit of business. There probably is not going to be a magic bullet out there to take this thing down. And the more I read the more I understand just how complicated the task is.

But equally, the more I read the more I know how quickly we are moving forward. Despite the absence of money for research, research is being done. The level of altruism I see in the men and women fighting on the front lines of this battle is truly inspiring.

A year ago, Jane and I were looking for a miracle. The miracle we wanted never arrived. But a different miracle did. We met some amazing and caring people. Those people changed our lives in positive ways. I hope we did the same for them.

And I hope our legacy will include having helped in some small way to move the ball forward in this search for a cure for this kind of cancer. I hope that what I write here and what we post here–and the stories our former students are putting together as I write this–will help even a handful of other patients find their way out of the woods of this cancer.

For right now, early detection is the only ting that can mean a cure. But early detection means transforming this from a zebra to a horse wearing stripes in the minds of general pracitioners. As they say elsewhere–“If you don’t suspect it, you can’t detect it.”

While I disagree with Dr. Eugene Woltering about the humor of his “crawl for the cure” remark, I have to admit the thing has a nice ring to it. Even as I was writing yesterday there was something nibbling on the back of my brain. It didn’t fit in with what I was trying to say yesterday–that too many patients need us to race, not crawl, toward a cure for NET–so I left the idea where it was.

But after I finished writing the thought of that as a powerful slogan–and a powerful idea–would not go away. How best leverage the idea into something that will raise consciousness–and funding–for NET was something that pestered me all night.

My first thought was to literally crawl to Washington, DC to publicize the impact of the pathetic funding levels that are the direct result of the National Cancer Institute’s 1968 decision to eliminate NET funding because of its rarity. But I am not sure my knees–or anyones–let alone my wrists, would make such a journey possible. It is some 600 miles from here to Washington. The journey would be unbearable in hot weather, impossible in cold weather, and I am not sure there are enough temperate days in either the spring or fall to carry out such a mission. Still, as I said about the Marathon Walk at one point, if Jane could face what she faced, endure what she endured, surely I could find a way…

My second thought was to crawl up Rte 138 to Boston. The distance is less and it might make clear whether making a trip to Washington was in any way possible. But what would the purpose be? Governor Deval Patrick has just declared November NET Awareness Month in the Commonwealth–and while there is no money attached to that decree it might make fundraising here in the Commonwealth a bit easier.

I thought about crawling a round a mall as a fundraiser–and that may be a thought yet for a year from now. But malls are semi-private spaces and, as I learned in my abortive attempt to do a walk for this November 10 (Worldwide NET Awareness Day) in some area malls, there are insurance regulations and a dozen other time-consuming hurdles to get over before that can be made a reality. Still, maybe that is the hook for the mall campaign that I have put, for now, on the back burner because of the time commitments that other pieces of this require this fall.

I thought about taking a trip to Washington, DC on November 10 and crawling around the halls of the capitol to visit senators and congressmen to raise their awareness of the disease and argue for funding. But that is the day before Veteran’s Day–and I bet they all will be out of their offices and home in their districts that weekend after a hard week of weeping and wailing about the federal budget deficit and the report of the Super Committee. If you want to draw attention to something like this it is better to do it on a slow news day–and preferably when there will be someone other than staffers to embarrass.

So I think maybe that particular crawl will have to wait until after the first of the year.

Which route–or routes–should we take? I am not sure. The last two seem the most practical: they dramatize the plight of NET patients in a highly visible way and have the advantage of being novel as well–something the mass media might gobble up and adopt.

But I am open to other ideas. You can post them on walkingwithjane.org/community or on Facebook.com/walkingwithjane. I promise to read them all and think about them.

What I do know is “Crawl for a Cure” is too good a phrase to waste.

Jane and I taught school for over 30 years. There were lots of good things about that experience–but there were bad things as well.

At the last teacher orientation day of our career we were welcomed back with a short speech by a member of the school committee who told us we did not really need more money in the school budget–did not really need an increase in pay or more money for books or lab experiments or equipment–did not really need to think about replacing our 60 year old building–that we had everything we needed to teach our students.

That he said this in one of the most poorly paid school districts in the commonwealth with a per pupil expenditure that struggled to reach–and often during my career did not reach–the state funding mandates–that he said this as a resident of one of the wealthiest communities in the state–put a brutally ugly spin on the opening of that school year for all of the faculty in attendance.

In the two videos I posted links to yesterday and today both doctors make a point of saying the old method of treating NET by watching and waiting and doing nothing is not the way to go–that patients die as a result.

In both videos they talk about the distance we have come in recent years–and I am happy to see that progress.

But I kept coming back to the same lines in my head as I watched them: This came too late for us. That came to late for us. If we had only known about this X years ago. If we had only known about that Y months ago. It would have made such a big difference.

I cannot describe for you what it was like to watch my wife die. I cannot tell you what it was like to tell her there was nothing more we could do. I cannot tell you what it is like to come home to a truly empty house or to wake up in a bed empty of her presence. It is different from a break-up or a divorce. There love has fled–but the once beloved is still alive: you can literally hear their voice, literally see their physical form.

And I do not know–cannot know–what it was like for her. As someone said to me when we were

in the hospital, we cannot know and understand what a patient feels any more than they can know and understand what we as caregivers feel. But I did see the outward signs of what it was doing to her.

When you are fighting a disease–just as when you are teaching school–money matters. No one would believe for an instant that we would be in the same place we are now with breast cancer without having spent the oodles of money we have spent on it. The Komen Race for the Cure raised $1 billion last year. The National Cancer Institute kicked in $600 million on top of that. The American Cancer Society put in a substantial amount on top of that. And those are just the big spenders.

That money is leading us to a day when breast cancer is, for all its patients, what it was for my sister-in-law: something she thinks of in the same way that she thinks of getting through a bad cold. And there will be no one on the planet happier about that moment than I. I have already lost too many friends to that awfulness. My students have lost too many mothers.

I know we do not have enough NET researchers to absorb that level of investment–or anything like it–today. I know the cost-benefit analysis argument. I know drug companies are driven by profit and that, for now at least, there is no great profit to be made from NET patients.

But the what ifs disturb my sleep. What if the NCI had not needed to cut costs in 1968? What if we had put even $5 million a year in current money into NET over the last 43 years? Or $10 million? What if doctors had been even fractionally more aware of NET in 1980? What if every patient presenting with IBS symptoms had routinely been given a 5-HIAA test then? What if…? Would Jane still be here?

Money matters. It buys research. It buys awareness. It buys equipment. It buys testing. It buys space in medical textbooks and medical training programs. It buys lives–and the quality of those lives.

I am not a doctor. I cannot say what it means to lose a patient. I cannot imagine what it is like to be endlessly fighting diseases and losing patients to them. I am not a nurse. I cannot imagine what it is like to give that intimate level of care day after day after day to patient after patient after patient–and see too many of them lose that fight at too young an age.

And maybe I am too close to my own loss to see things clearly. But I want us to race–not crawl–toward a cure for NET. I know that will be hard. Finding a cure is going to be like fighting the Hydra–every time you solve one problem another two heads will grow in to take its place.

So I m willing to race to make this a chronic disease that we can manage the way we manage diabetes or AIDS.

But crawling for that–other than literally to raise money and awareness–is not something I am willing to do.

Somewhere out there right now there is another couple in the same position Jane and I were in one year ago. They are strapping themselves in for what will prove their last battle together. They have no idea how hard that battle is going to be.

Somewhere out there is another couple. They are where Jane and I were two years ago: they know something is wrong, but they don’t know what it is. They are facing their third wrong diagnosis.

Somewhere out there is yet another couple. They are where Jane and I were three years ago–blissfully unaware that there is anything seriously more wrong than an occasional bout of IBS.

Somewhere out there is a young woman who is where Jane was 31 years ago. She has lost some weight and is suffering from awful stomach cramps. If she goes to the right doctor, she has a chance. If she goes to the wrong doctor…

We owe all of them more than watchful, hopeful waiting.

We owe them a race toward a cure.

Here is the second of the two videos I promised for the weekend. I will be posting a more personal item later today, but it will make reference to some of what is discussed in these two videos.

In this video Dr. Eugene Woltering, another of the leading lights in NET research and treatment–and a really dynamic speaker who makes all kinds of popular culture references that connect things together. He raises a number of really interesting points–and raises hope that we are closer to some ways to deal with NET than we were. Woltering is from LSU.

I am taking a couple

of days away from thinking about cancer. Today and tomorrow am posting two videos from the May 1, 2011 Carcinoid Cancer Foundation Symposium in LA for patients and caregivers.

This first video features a talk by one of the luminaries in the field, Dr. Edward Wollins, co-director of the Cedars-Sinai Carcinoid and Neuroendocrine Tumor Program in Los Angeles. The titlee of the talk is Carcinoid and NETs in 2011: Now, New, Next. It runs about 47 minutes. There is a lot of very good–though for me very painful–information in this. If you want to know where we were medically six months ago, this and the video I will post tomorrow are very good places to start.

The middle of next month is the three day NANETS conference in Minneapolis. That will give us an even better picture of the progress being made. The rate at which we are learning new things about this disease is incredible.

Worldwide NET Awareness Day is less than a month away.

Today, I read the first draft of Becky Martins’ piece on Dr. Richard Warner, one of the founders of  the research into this disease.

In it, I discovered the reason the National Cancer Institute does not fund NET research: It is considered a “rare cancer.” That designation is not new. It has been in place since 1968.

That’s right: the federal government, through NCI, has not spent any money on NETs since 1968. And since they have spent no money since 1968 we have had to limp along on whatever handouts we have been able to find.

No wonder we had not, before this summer, seen a new drug or treatment in the US get FDA approval in the last 30 years.

No wonder we have not come up with many new and better ways of detecting the disease than the 5-HIAA urine test developed in the mid-1950s.

No wonder most NETs are either discovered by accident or not discovered at all until after they have invaded the liver–and even then they may not be getting diagnosed at all.

No wonder of the three million potential cases of NET the autopsy studies lead us to believe are out there, we have only found about 120,000.

NET is locked into rare cancer status because we decided in 1968 it was rare–and then lacked the funding to discover that maybe it was not rare at all. Or maybe it was rare then but, because of environmental factors, has become more common now. But we have not had the resources to discover anything that might have changed that view in 43 years.

Talk about being stuck in Catch-22.

Think of all the things that have changed since 1968. Think of all the discoveries in medicine alone since that date: CTs, MRIs, vaccines, antibiotics, arthroscopic surgeries, angioplasty, organ transplants… Where would we be without the federal money that went into those things?

That’s where we are in too many respects with regard to NETs.

Yesterday I talked to a staffer from US Senator Scott Brown’s (R-MA) office about the need for federal funds to keep teachers in classrooms. If I had known then what I know now I would have bent his ear on this as well.

It is certainly an item that is going on my to-do list.

Put it on your list, too.

We have had to rely on the kindness of strangers for long enough.