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really get tired of writing about the lack of respect neuroendocrine cancer and carcinoid syndrome get from the national media.

But the people who write for the mainstream media and general interest magazines I can at least cut a little slack because they are not really medical professionals. They are generalists writing for an audience that averages–at best–a ninth grade reading level. It is easy, when you don’t know much about cancer or medicine, to see one tumor in the pancreas or the stomach as just pancreatic or stomach cancer. The nuances sometimes get lost in the simplifications made necessary by the speed with which most stories have to be written and by the dictum that a fifth grader may have to be able to make sense of it.

Still, it aggravates me because, as a former journalist and journalism teacher, the first thing I always demanded from myself–and from my students–is that the facts be right–that what we printed be accurate even when we were writing against a tight deadline. I write a piece here almost daily–and I try very hard to make sure that what I write is accurate and makes sense. When I have doubts, I ask someone with more experience or knowledge than I have before I hit the publish button.

But what really aggravates me is when someone who should know better gets things wrong.

And that is what happened on The Dr. Oz Show yesterday. They interviewed a patient who had NET. They included part of that interview on the air. But the part that mentioned NET ended up on the cutting room floor. And that turned the patient into just another stomach cancer patient.

That would be less of a problem for me if NET were a typical stomach or gastrointestinal cancer that was treatable with the normal surgery and standard radiation and chemo therapies. But NET is not a typical GI cancer. The hormones an NET produces complicate surgeries because of the possibility of carcinoid attacks. Normal radiation therapy is virtually useless because it attacks cells that are growing rapidly. Normal chemo therapy faces the same problem. How one handles metastases versus primary tumors is also different when you deal with an NET.

The Dr. Oz Show claims to be a program about medicine. When I have seen his shows in the past, I have taken his pronouncements seriously. Now I am not so sure I should have.

In the news media business, credibility matters. Whether Dr. Oz likes it or not, he is in the news business: he is delivering medical news. Thursday, he and his producers got it wrong.

I told my students that there would be times they got things wrong. It is an inevitable consequence of trying to work on a deadline. But I also taught them that when they got something wrong, they needed to run a correction and an apology–they needed to make things right and take responsibility for the error.

Dr. Oz owes us that.

(A tip of the hat to the Carcinoid Cancer Foundation for finding out what happened with the interview.)

One of my goals in starting Walking with Jane was based on the pittance being spent on NET Cancer and Carcinoid Syndrome in this country. I’ve spent some time trying to find out who spends what over the last year and discovered the funding issue is every bit as bad as I thought it was. While figures for 2011 are not yet available–and from what I have seen are somewhat better than 2010–they are still tiny compared to what gets raised for and spent on other issues affecting similar numbers of people.

I am not saying those issues don’t matter or that they should not be funded at the level they are. I am saying that NET/CS research is being funded at far too low a level. Those funding

levels are resulting in the deaths of far too many people. That needs to change.

To that end I have been lobbying the American Cancer Society to increase its funding for NET/CS research and education. As I reported here last month, that request has reached the desk of Dr. Otis W. Brawley, the ACS’ chief medical officer, with the endorsement of the CEO of the ACS’ New England Division.

One way you can help in this effort is to write Dr. Brawley (otis.brawley@cancer.org) with your story about your experience with NET/CS. We need to put clear human faces on this disease at every opportunity for those in a position to help move NET/CS onto the national agenda.

Even those of you who have not been directly affected by this disease can help by writing letters of support to Dr. Brawley.

I know that many organizations would supply you with a form letter you could just put your name on and send. From talking with people over the years I know that is not a very effective way to move policy-makers. It is the personal letter, written in your own voice, that will have the greatest impact. Those letters reveal the real passion of the people writing them in a way no form letter ever can.

And while you are writing that letter, send a copy of it to your senators and representative in Washington, DC. Each has an email address and a regular mail address if you want to increase the impact of what you write. Encourage them to get the National Cancer Institute to move NET/CS onto their agenda in a more substantial way.

These actions will cost you nothing but the time it takes you to write and mail them. But they will help bring this little known cancer the attention it needs if we are going to find the money to find a cure.

I took down the Christmas tree yesterday. I had thought about doing it earlier but it gives a spark to the house in the evening.

I did what I said I would do New Year’s Eve. I had two glasses of champagne–one to toast the past with and one to toast the future with. I was elated for a time–and the good vibe continued through a part of New Year’s Day. Then I got the call I knew was coming: a friend’s mother died in mid-afternoon. She had been ill for a long time and her passing was peaceful–and long expected.

I have never been one to read obituaries–and this past year I have avoided them more than ever before. I do not need the reminder that life is fleeting–that no matter our success at beating this disease or that disease, death is always going to be out there waiting. Sometimes it will come as an ambush. Sometimes it will arrive as an old friend. But for those left behind it is frequently an unwelcome guest.

I had planned to watch a movie New Year’s Eve. Instead I encountered a program on PBS about the life of the Buddha. There was much there I had forgotten–and some perspectives that were new to me–or at least felt that way. In the West there is a word we translate from Sanskrit as “suffering.” But it turns out the meaning is closer to “dissatisfaction” –though even that is an approximation that is not quite accurate.

There is a great gulf between those two terms–a gulf that is not easy to reconcile. There is little we can do about suffering–it must be endured. Outside agencies can have an impact on our suffering, but there is little we ourselves can do to end it. Dissatisfaction, on the other hand, leads us to change what we are doing and try something else in hopes of making the situation more satisfactory.

Irritation is a necessary ingredient in bringing about change. It is what, in an oyster, creates a pearl.

As human beings we can either suffer through the things we do not like–or we can use that suffering to inspire us to do something about the things that cause us to suffer. When we do that we move from suffering victim to dissatisfied actor–a person who is willing to become an agent of change.

In order to bring about change we must first change ourselves. Jane undertook that change the day we visited her first oncologist. “I am not going to let this disease define me,” she said. “I am not dying from this disease, I am living with it.” Her refusal to be a victim was the first step in her courageous battle with the disease.

Both those of us with the disease and those of us who are caregivers need to remember that the disease does not get to define who we are unless we let it.

And for those of us who have lost someone to the disease, our grief cannot become all that we are. I am not saying, “Do not grieve.”  Nor am I saying that it is wrong to let grief consume us for a time. But just as our loved one’s life was about more than the illness that claimed them, our lives need to be about more than their deaths and our grief.

I took down the Christmas tree yesterday, but the light of it still burns in my memory–and in my soul. And the light of Jane’s life burns there too, only far more brightly and more powerfully.

The Doctor Oz television program will focus on stomach cancer on Thursday. Among the patients on the show is someone with NET Cancer, according to a note I got yesterday from the Carcinoid Cancer Foundation.

In the Boston area the program appears on WFXT, Channel 25 at 5 p.m. If I am reading his website correctly the show repeats on that channel at 10 a.m. Friday.

In the Providence, RI area the show is on at 3 p.m. on WJAR, Channel 10.

In NH and Maine, try WABI, Channel 5 at 10 a.m., WAGM, Channel 8 at 2 p.m. and WGME, Channel 13 at 4 p.m.

In Vermont, two stations in Burlington broadcast the show: WVNY, Channel 22 at 5 p.m. and WFFF, Channel 44 at 9 a.m.

In Western New England, the show is on WFSB, Channel 3 in Hartford at 4 p.m.

If you are outside of New England, the Dr. Oz website has a place on the top right of its main screen that will either give you the closest station to you or a way to get the nearest station by typing in your zip code.

Be forewarned, however, that the listing information on the web site may not be 100 percent accurate. The Boston listing is different in terms of time on the search than it is when it pops up on page 1. I would suggest even those of you in New England check your local listings just to be sure the times above are accurate.

This is very good news for all of us fighting this form of cancer since it will give the disease national exposure that has been hard to come by so far. Let’s hope this is only the beginning.

I have been looking at old movies lately: Mr. Smith goes to Washington, Meet John Doe, Casablanca, It’s a Wonderful Life, Miracle on 34th Street…

They are the movies that shaped my morality and my ideals as a child growing up. In each, a good person tries to stand up and do the right thing. The powers that be look overwhelming and have at their disposal all kinds of weapons they can use to destroy both the hero and what he believes in–and for a time they succeed. But in the end, the people rise to the defense of the hero–who often does not see himself as a hero, but only as an ordinary man placed in a peculiar position that he is uncomfortable filling.

Sometimes, like Victor Lazlo in Casablanca, they stand on a world stage where their actions affect millions. Others, like George Bailey in It’s a Wonderful Life, fight the lonely Battle of Bedford Falls. His actions seemingly affect only the people in his immediate neighborhood–though they may have a broader impact than he knows. And both men are frustrated with who they are: Lazlo thinks he would love Bailey’s life–and Bailey envies Lazlo’s place in the big picture.

The truth is, we need heroes at every level of life. We need our Kris Kringles who make children–and grown adults–believers in the power of love; we need our Mr. Smiths and our John Does to remind us of the power of our ideals and the importance of protecting those ideals from those who see them only as a means to manipulate the common man for their own ends; and we need our Victor Lazlos and George Baileys who are not there for the hour or the week or the month, but are there for the long haul, building a future brick by brick, house by house, and person by person.

And the further truth is that we all have it in us to be heroes–and to be all the different kinds of heroes there are. Jane’s life was heroic by any measure long before she was diagnosed with NET. She worked tirelessly to help people become thinkers and learners and workers in a world that too often tells us to take it easy and leave the thinking and learning and working to others.

People who saw only the end of Jane’s life called her struggle with NET heroic–and it was. But it was no more heroic than the life she led before that diagnosis. She faced both life and death with equal measures of grace under pressure. She faced both with the strength of a George Bailey, the ideals of a John Doe, the courage of a Mr. Smith, and the love of a Kris Kringle.

As we begin this new year I hope we will all be filled with the spirit that was always the heart of who–and what–Jane was–and is. We all need to be the heroes our communities, our nations, and our world need.

One year ago today I got through my first New Year’s Eve without Jane. She had died just 21 days before. I went out with my brother, his wife, and their son for dinner. They dropped me off at my youngest brother’s house. I was in bed by 10 p.m. I had a flight out of Seattle early the next morning.

I got home from Seattle last night. This year I will do what I was afraid to do last year: face New Year’s Eve here in the house that is our home.

I look at those first two paragraphs and I realize why this blog does not make the list of sites recommended by the Carcinoid Cancer Foundation’s latest e-newsletter.  When the list came out this week I will admit I was initially disappointed walkingwithjane.org was not on it. Then I went to each of the sites they recommended and read them.

All are written by people who are living with NET for others who are living with the disease. They are uniformly upbeat in their tone and their outlook. One even includes a video about how to mix blackberry powder and use it to alleviate the symptoms of the disease. They are writing about life with the disease.

They are living with the disease because they were diagnosed earlier in the process of the disease than Jane was. The stories I write here have to do with the surviving spouse dealing with the aftermath of the disease: the empty rooms, the empty space in the bed–the echos of a life. I am a constant reminder that this disease kills–that we have only delaying tactics and ways to alleviate the symptoms, and not a cure–not for most who get this diagnosis.

This daily expiation is not something anyone freshly diagnosed with NET should read most of the time. Those folks need a strong daily dose of optimism they are unlikely to find here. Information about the latest research? Yes. Links to support groups and foundations? Yes. Hope that we will find a cure? Yes. An advocate for increasing the money available for research? Yes.

But I lost my wife to this vile thing. I watched her bravery and supported it. I watched her optimism and watered it and fed it the way I hope every spouse whose mate gets the NET/CS diagnosis will. I talked with her doctors and her nurses and every technician who came through the door to make sure they knew everything they needed to know to give her the best possible care. Most importantly, I surrounded her with love.

We did all we could to cure her illness. We did all we could to heal her wounds. But, in the end, I had to let her go–her body could no longer fight the disease–and keeping her alive would have been the kind of cruelty she hated most. She killed the cancer the only way she finally could: by dying herself and taking it with her.

Tonight, ten minutes before midnight, I will open the half bottle of champagne we would have shared and pour it into one of the glasses we used each year. Just before the ball drops, I will toast her final struggle and drink it to the lees.

Then I will pour a second glass and–at the stroke of midnight, when all the world goes mad–toast the future.

Happy New Year to you all.

Those of you who know Jane and me know how addicted we both were to planning for the future. Even our vacations were planned with military precision–not that we always followed those plans to the letter. We always allowed for the possibility that some new road would open up that would make for a better trip.

And we were planning like fiends long before we met. That piece of us did not die with her body. I am certain she is planning some things even as we speak. And anyone who knows me at all knows that I am plotting the year ahead for the fight against NET from this redoubt–as well as a variety of other things.

Herewith, then, the goals for the coming year.

• Plan for the Walking with Jane Dybowski Fund for Neuroendocrine Cancer at Dana-Farber
• Talk with those creating, and help out with, the Center for NEC Research and Education at Dana-Farber
• Establish the Walking with Jane Online store on this site to benefit the Walking with Jane Relay for Life Team
• Set up a page on this site where people can make donations to the organizations engaged in fighting this particular cancer, including Dana-Farber, the Caring for Carcinoid Foundation, and the Carcinoid Cancer Foundation.
• Develop and implement a lobbying strategy to fund NET and Carcinoid research at the federal level
• Secure significant funding from the American Cancer Society to increase research and education on NET and Carcinoid Syndrome
• Create the Crawl for the Cure program to raise funds for, and awareness of, NET and CS  at malls across America on the weekend of November 10, 2012.
• Raise $10,000 through the Walking with Jane Team for the Greater Fall River Relay for Life.
• Help create at least three Walking with Jane teams at other Relays
• Raise $10,000 through the Jimmy Fund Marathon Walk for the Caring for Carcinoid Foundation
• Help see funding for NET and Carcinoid research double over 2010 levels in 2012
• Build views of this website to 1000 per week
• Expand both the materials in–and the use of–the Press Kit to continue to raise awareness of NET and CS in the public press
• Achieve wider  distribution of the Is it IBS or NET? pamphlet
• Create and distribute additional NET awareness pamphlets
• Maintain and expand this website
• Continue to build relationships with other organizations involved in NET and Carcinoid Syndrome

When Jane and I were working, this week  between Christmas and New Year’s served a variety of purposes.

First and foremost, it was a time to rest and regroup. While many think teaching is an easy job, it is not–especially if you do it right. The 16-18 hour days had worn us out by this point in the year. We tried to relax this week. Those of you who teach should put away the books and papers until Sunday and get reacquainted with spouses, children, families, and friends.

But it was also a time for thinking about the past and looking ahead to the future. As I have written before, while we cannot change the past, it informs the present and influences the future. A year ago, I was in no condition to be very thorough in that review and planning routine. Jane had died less than three weeks before and I was badly damaged in heart and mind.

Still, I tried to think about the future, tried to think about the past, tried to come to terms with the present moment. I knew I needed to do something about Carcinoid Syndrome. I knew I had to do something about NET. But I also knew I needed time and space to heal before I was going to be any good to anyone. On the plane home from Seattle, as I listened to the flight attendant explain about the oxygen masks–and how you should get yours on before you put one on your child–I found the rationale that allowed me to take those steps first.

But I also felt bound by the promises I had made to Jane: that I would do all I could to fight this thing and destroy it; that I would walk the entire Relay for Life; that I would find other ways to help doctors and researchers take down this disease. At one point I even thought seriously about going back to school to become a doctor or nurse. It was only as I realized that the hours of study involved in those pursuits would get in the way of the work I most needed to be doing that I became able, in my mind, to delegate that work that needed to be done by MDs and researchers, and I let that thought die.

Gradually, a plan evolved. I did the Walk for MS and the Walk for Hunger because those were both things we had talked about doing in the past, but had never found the time to do.

I signed on to do the Relay for Life in Taunton and in Fall River. Friends and students designed and sold t-shirts, organized raffles and baked goodies, figured out retail displays and came up with tents and tables.

I talked with people from the foundations fighting NET and looked for a useful niche or two for Walking with Jane that needed to be filled. We have found good and experienced allies there and in the medical community.

Others designed this website–and have helped tweak it since the launch September 2–built the stories for the press kit, and encouraged a number of other initiatives that will appear here soon.

Historically, I have been awful about accepting help from others, about delegating work and responsibility. This year has taught me the value of that. I’m still not very good at it, but I am learning.

Still, while we have done a lot this year, a lot remains to do. We have only sketched the broad plan and begun to pour the foundation.

NET and Carcinoid Syndrome are still out there taking lives and causing misery.

I have received so many gifts this past year I could grow old trying to write all the thank you notes. I wish I could place a physical gift under all your trees.

On one of the grief support group sites someone posted 12 gifts for those in mourning this time of year. Those gifts have inspired these–my holiday wishes for all of you.

First, health. As my grandfather said, without it, all the wealth in the world is worthless.

Second, unconditional love. Conditional love is a poor substitute for the real thing. Love others as you would be loved.

Third, friendships based on unconditional love. Even marriage needs a sound basis in friendship for those days when there is stress and strain (list of top sources of stress). If every marriage were based on friendship and unconditional love there would be fewer divorces.

Fourth, forgiveness. The most powerful moment in my life was on the day before Jane went into the hospital. We were sitting on the couch together and she said, “I want you to know you have never done anything wrong in this relationship–and anything you think you have done wrong I want you to know I forgive you for it.” Be forgiving and accept forgiveness.

Fifth, patience. It is its own reward. Cultivate it.

Fifth, true humility. None of us does anything alone, even when we think otherwise.

Sixth, the strength and ability to cry.

Seventh, the strength and ability to laugh.

Eighth, the ability to share both of the above with others.

Ninth, the ability and strength to say NO at need and make it stick. (I have taken this from the aforementioned list for those in grief. The nice thing about this form of re-gifting is no one needs to give up the gift to offer it to another. It is something we all need.)

Tenth, the ability and strength to say YES to the experiences–both old and new–that will help us grow as individuals and as a people.

Eleventh, courage to face the times ahead when they become difficult.

Last, wisdom that we may learn from both our own mistakes and those of others, that we may be able to discern the difference between the right paths and the wrong ones, and that we may know when to act–and when not to.

Open each of these gifts in your heart. May they bless us, each and every one.

It is Christmas Eve–my second without Jane. Tomorrow will be Christmas Day–my second without Jane.

A year ago there was only numbness. Today? It is too early to say how I am going to feel. Too early, too, to even guess what Christmas Day will bring. Both will be different than two years ago. Jane was on the mend after fighting off the H1N1 flu that, in her, was nearly all anyone feared it would be. We were happy and thankful.

We worked together to prepare Christmas Eve dinner for her father and sister. We adjourned to separate rooms to finish wrapping the presents we would open in bed in the morning. We listened to Christmas songs and snuggled with hot chocolate on the couch.

It was a quiet night filled with the beauty of expectation. We did not know it would be our last together.

Savor the time you have with your friends and your families tonight. Hold them close to you. We simply never know when these bodies will stop working. We rarely get to know when the last anything is taking place.

But we cannot spend our lives worrying about death–either our own or someone else’s. Death is out there, certainly. Worrying about it can do but little for us. Yes, we need to take steps to preserve our health–and the the health of those we care about. We need to go to the doctor, take our pills, exercise regularly, and keep an eye open for signs of illness and injury. But we cannot allow ourselves to become so concerned with death that we forget to live. When we forget to live we are mere animated corpses waiting to be buried.

When death strikes near us many of us let that death kill us as well. We cease living and begin waiting for death. And in our initial grief that is ok. A year ago life simply did not matter to me very much. Had Death come for me then I might have gone without a second thought. All the flavor in everything had drained away–and a good part of me didn’t care.

“Leave the dead to bury the dead,” Christ says in one of his apparently less compassionate moments. It seems a cruel statement to a man who has lost a family member he cares deeply about. Jane and I shared our lives in every conceivable way–we even shared her death, albeit our experience of it was from two very different points of view. When she died a part of me died with her. But for as long as I live a part of her will live with me. It were a profanation of our love for me to live among the dead while she still lives within me.

So let the dead part of me bury her body–and let that dead part of me be buried there with the part of her that has died. And let our living body carry the parts of us which yet live back into life.

That will be miracle enough for this Christmas Eve.