We must be the change we wish to see in the world. –Mahatma Gandhi

Jane and I were teachers. We came to that work along two different paths that, in retrospect, were eerily similar. After college, I worked in retail, worked as a file clerk, tried my hand at freelance writing. For a time I was jobless, taking whatever day labor I could find. Eventually, I went back to school, got my teaching certificate–but could still not find regular employment. I substituted in Newton and in Brookline on and off for over a year before I finally found a full-time job teaching in Gilford, NH.

When Jane left school, she found work at Morton Hospital in Taunton as a lab tech. She drew blood, did urine tests, looked at samples under a microscope. One night she was on alone when she encountered a problem with a blood test that needed to be done for a pregnant woman. There was no one she could ask. She eventually figured it out, but decided she did not like the feeling of helplessness she’d had because her training didn’t cover what she felt it should have. She was a biologist and a chemist–not a lab technician–by training. The test was one lab techs learned in school in classes she never had. She wondered how many other things she did not know that she should–and whether someday her ignorance would get someone killed.

She went back to school and got her teaching certificate–and immediately found a job in Westport. That was one of the differences between being a science major and an English major in those days: there was always a greater demand for science teachers.

Our approaches to what teaching was about , however, could not have been more similar. Teaching was not giving kids long columns of things to memorize: it was about teaching them to think and to analyze–and then to communicate those thoughts and analyses to others. We both believed that when people could think and analyze and communicate, the world would be changed in significant and positive ways. We dedicated our lives to that ideal–and in the process had an impact on the lives of dozens, perhaps hundreds, perhaps thousands of lives.

Jane was the change she wanted to see in the world. There can be no more fitting monument to her life than for each of us to go forth and do likewise.

So as you celebrate this weekend, take a moment to envision the world, not as it is, but as it could be: a world without want, a world of true freedom and equality, a world with less disease and less suffering. Then think about the small things you can do to bring that world into being.

And in the new year, begin to do them where you are: work to end hunger in your city, your town; work to end homelessness in your city, your town; work for equal rights; work to preserve freedom; choose a disease and work to cure it; visit the sick; help a stranger; teach a child.

To quote George Washington Carver: “Put down your buckets where you are.”

In ancient times on the day of the winter solstice, a great log–the Yule Log–would be brought into the main hall and placed in the fire place where it would be lit–and stay lit until it completely burned to ash of its own accord. For as long as the log continued to burn the old year would continue. And when it was at last reduced to ash, the new year would begin.

It was, of course, a time of celebration: the sun had reached the furthest point of its journey south–the nights had reached their longest. And the further north one went, the greater the fear the sun would forever vanish beneath the horizon. But now the light turned north–and day-by-day the darkness fled before it–as just days before the light had fled from darkness.

But it was also a time of contemplation–a time to review the year passing from this earth and to think about the opportunities of the year ahead.

Ursula K. Le Guin captures the spirit of the time in one of her Earthsea novels. Ged, the protagonist, has been on a long voyage across the sea when he comes upon a great floating armada of rafts. For that day–the Day of Sun Return–the people sit in silent contemplation. Then a drum strikes and they dance silently through the night until the dawn in celebration. But they say nothing until the dawn.

The anniversary of Jane’s death was like that for me–a day of contemplation and the deepest mourning. At the dawn of December 11 I began to cry those uncontrolled tears and felt that uncontrolled rage build and overwhelm my sanity. And, for the first time, I let it take its full course.

Most people who have not experienced it believe grief ends–that by some magical process the end of that year of first events and holidays grief transmutes to normalcy. The truth is it appears to be a much longer process than that. For some, it never ends.

We lost my mother-in-law to pulmonary fibrosis five years ago. We lost my mother to Alzheimer’s 22 months ago. We lost my wife to NET 12 months and 12 days ago. We lost a former student to a heart attack barely two weeks ago.

We talk about trying to create more birthdays and less suffering. We talk about a cure for this disease and that disease. We do all that we can. But death is always out there. We can delay it, but we cannot stop it–not yet anyway.

Our lives are but a little space in the eternity of time. But what we do in that little space matters. How we treat each other–both those we know and those we do not–matters. We can make this world a better one–or we can make it worse.

That choice is not in the hands of any god–it is firmly placed in ours. When we take on that responsibility we will have matured into the creatures the universe–and its prime mover–needs us to be.

Happy Day of Sun Return.

The needs of the many outweigh the needs of the few–or the one. –Spock in Star Trek II–The Wrath of Khan

Have you hugged your spouse today? How about your kids? Your parents? The other people in your life you care about? Have you told them how you feel about them?

A couple of weeks ago I put up the small Christmas tree I bought last year and hung the ornaments Jane had made over the years we were together. Each ornament was like a kiss on my fingers but also like a tear in my heart. Decorating the house for Christmas was a shared act of love for us–and she made me promise before she went into the hospital that no matter what the outcome was I would put up a tree and decorate the house.

Every day was made up of those small acts of love: creating a small surprise at breakfast, sharing dinner at night, massaging her feet as we graded papers on the couch, her massaging my neck and shoulders on a long drive…

Her death sealed all those small acts of mutual kindness. They are both the pain and the joy of my current life.

We expected to grow old together–to slowly decline into old age and death–and when one of us died there would be the solace for the remaining spouse that their own end would not be so far away as to be too troubling.

NET destroyed that dream.

At this moment, somewhere in America, it is destroying that dream for another couple.

And it will keep on doing that until we have more answers than we have now.

Last year I meditated and prayed and fasted and meditated and prayed and ate and prayed and meditated. I focused energy on my wife’s immune system, on her heart, on her liver, on the tumor in her appendix. We found the best doctors we could possibly have found–and we searched and begged for a miracle.

The miracle we wanted never happened. If it had, Jane would be alive and on the road to full recovery. We would have put up the big tree and taken out all the ornaments. We would be bathed in joy.

That miracle would have saved Jane’s life.

But would it have saved anyone else’s? Would this site exist? Would I have met the people I have met? Would I have written what I have written? Would I have done what I have done? Would others? We  cannot know.

I wish she had not suffered through a month of rising and falling hopes–that her death had come more easily. But if it had, would we have built the relationships with her doctors and nurses and technicians that we did? Would her illness and death have had the impact people tell me it had on them?

Jane and I did not get what we wanted. But perhaps the broader world will be different in a positive way because we did not.

I have to hope so.

My classroom was dark when I returned to it a year ago this week for the first time in more than a month. In many ways it may have been too early to return to work. But I could not face sitting in an empty house staring at the walls. And our students–some of whom saw us as substitute parents or an aunt and uncle they were very close to–had been without us long enough.

My journalism and AP students were already in the room. They had fashioned a giant “WELCOME HOME” sign at the front of the room lit by illegal Christmas lights. It stayed there until June–and I left it there to welcome my replacement to the spirit of the place.

That day–and the week

that followed–were filled with small blessings that reminded me of the power of unconditional love in the world. It was a subtext of so much that Jane and I did–and attempted to do–during the course of our careers. That week I lived on what we had sown.

But, in retrospect, we had lived for many weeks–both of us–on the power of unconditional love. It had showered down on us from the day Jane’s doctor first said, “I think you have liver cancer,” continued as we met the and forged friendships with the specialists and surgeons and nurses and technicians who gradually became central fixtures in our lives, and was reinforced and extended by the friends who went out of their way to visit–bringing Jane’s father and sister with them.

“In 900 years, I have never met anyone before who was not important,” the Doctor says in the most recent incarnation of Dr. Who. The implication is the person he is talking to believes himself to be unimportant. And the truth is that everyone is important. Every action has an impact–for good or ill–on someone or something. When we act within the framework of unconditional love those impacts are more likely to be good than ill. None of us is perfect–we forget what we should do periodically and do the wrong thing at the wrong time. And we have to forgive ourselves–and others–when that happens.

I have been blessed this year-and-a-half with endless amounts of patience and unconditional love from those around me. At times my own pain and stupidity has overwhelmed my ability to repay some of you in kind. I will try to be better.

What we do here, I hope, will help to generate a cure and greater awareness of this disease. But equally important, I hope it will help me to rekindle that flame of unconditional love that both of our lives were based on–and spread that love to everyone I encounter in the time that remains.

Jane will not come back to us if we do this. “What’s done is done and cannot be undone,” to quote Shakespeare. Unconditional love does not seek reward. Instead, it seeks the greater good–and the greater joy.

We buried Jane’s body a year ago today. People tell me there were lots of people at the funeral. Whether there were or not I cannot honestly say. My eyes were on the casket and the sudden absence of the person who was half my soul. There was a faint joy in knowing she no longer hurt–that she had gone home. And the numbness of the sudden shock of it held the grief that has since blossomed at bay.

I helped carry her casket into the church. I helped carry it out again. I helped carry it to the grave. It is not a husband’s traditional place in the order of a funeral. But as I had carried her across the threshold on our wedding day, I was determined to carry her figuratively into the new life we both knew was there.

In a little while I will make the solitary drive up the hill to the cemetery. I will finish decorating the grave for Christmas and leave a Christmas card for her. I will come home.

Others will do the same today for those they have lost. They will enter the holidays for the first or second or third or fourth or..nth time… They will face the empty chair, the empty place at the table, the empty space in the bed next to them.

I took my niece to see A Christmas Carol yesterday in Providence. The play is always powerful and poignant for me–and yesterday it was particularly so. For me,Christmas/Solstice/Sun Return/Hanukkah/Kwanza/Whatever other holiday you may celebrate at the turn of

the year, is about the return of light out of darkness and hope out of despair. There is no more hopeless case than Scrooge–and his redemption is a reminder that no matter how dark things seem, no matter how hopeless, the power is in each of us to change the world–or at least some small piece of it. And if everyone worked–to cure one disease, to feed one child, to house one homeless person–the world would truly be changed.

Jane and I fought the battle to educate children–to help them learn to think and feel at the same time–to know that they could make a difference in their lives and in the life of the world.

Now, for a time, my work is the cancer that took my wife, that takes thousands of people’s lives every year. It is sometimes painful work I wish had fallen on someone else. But teaching had its painful moments as well.

In this season it is easy to get caught up in the miracles of the Festival of Light, of the birth of a specific child, of the turning back of darkness. What gets too often lost in the shuffle are the small daily miracles created out of grief and love and momentary compassion. Every person has it in them to be or to create the miracle that saves or betters the life of another.

So don’t just celebrate miracles this time of year–be one.

WARNING: WHAT FOLLOWS IS PURE SPECULATION. IT IS NOT MEDICAL FACT. IT IS ME–THE ENGLISH MAJOR–THINKING ABOUT THE LOGIC OF SOME OF WHAT I HAVE BEEN READING.

I put that all in capitals because I don’t want anyone to get confused by this piece. I am not a doctor. I have read a lot about NET and Carcinoid Syndrome in the year and four months since my wife was first diagnosed with the disease–and particularly in the year since her death. But my opinions and questions are only those of a layman who knows just enough to ask what may be truly dumb questions.

A few weeks ago I read a paper linking some aggressive forms of prostate cancer to neuroendocrine tumors that were in close proximity to the prostate cancer tumors. The writer argued that the aggressiveness of those cancers was because of the NETs.

This got me wondering about how many deaths attributed to prostate cancer were actually attributable to NET. I have written before about the relationship between NET and idiopathic right side heart valve disease and wondered how many cases of it were NET-related. And I have asked more than once how many cases of NET there really are as opposed to how many we are diagnosing. I have written about the autopsy study that indicates the possibility of as many as three million cases of NET in the US. But I also know that many cases of NET seem to be totally benign insofar as they are inactive–meaning they do not produce hormones.

The medical community has long known that some cancers are more aggressive than others. For example, some breast cancers move at a faster pace than others. Exactly why is not entirely clear. Some of it may have to do with human genetics. Some of it may have to do with the genetics of the cancer. And some of it may be hormone driven.

That last possibility gave rise to this speculation: If the level of aggression in some cancers is hormone driven, and NETs produce hormones, how many cancers are made more aggressive by the presence of even very small active NETs?

If a large primary NET is the size of a lentil–and it is sitting next to a large “normal” tumor, does the pathologist biopsy both tumors–or does he biopsy only what, by size,  appears to be the primary tumor?

I know from a video I watched two weeks ago of one session at the NET Patient conference in November that much of the time only one NET is biopsied when several may exist because of the mistaken belief that a metastases will be the same as the primary tumor.  The presenter argued that the primary and the metastases in NET  might be different–might be producing different hormones–and might require different therapeutic approaches.

Here’s my dumb question: How many of the relatively aggressive  general cancers we see are aggressive because of their proximity to an undiagnosed or unrecognized NET? Does the aggression shown by prostate cancers that are accompanied by NETs apply to cancers of other organs as well? Logic tells me it might. But we need data to prove or disprove the logic.

One year ago today I was at the funeral home preparing for Jane’s wake. I spent a few private moments with her, wondering what we could have done differently, wondering why I was standing there looking at her empty frame when just a year before we had been making final preparations for Christmas.

We had never heard of Neuroendocrine Tumors or Carcinoid Syndrome. The Dana-Farber Cancer Institute was something WEEI and the Red Sox did a major fundraiser for–and to whom I had sent a check every year as part of our commitment to a number of charities.

My youngest brother had come out from Seattle to spend the week between Jane’s death and her funeral with me. We had spent the days arranging for flowers and the picture collages and doing the things one does the week before. I was both emotionally numb and raw at the same time.

Just before we left the house that afternoon, I had taken a call from Jane’s cardio-oncologist. He told me Dana-Farber was setting up a national center for research into NET–that they had been thinking about it for a while and now were going to do it. I remember being stunned and mumbling something about doing all I could do to help. I thought I would be ready to do that in January. It would prove to be months before I could even move.  And it would be a year before the topic came up again.

One of the first people through the line when the doors opened for the wake was one of Jane’s nurses from Brigham & Women’s. Then the floodgates opened. Hundreds of people came through the line–some driving in from central New Hampshire and New York: relatives, friends, parents, teachers, administrators and former administrators, neighbors, doctors and nurses and office workers, students and former students. I had expected a crowd, but even I was overwhelmed.

There are no crowds here tonight. Instead I will write Christmas cards–though unlike a normal year there will not be a lengthy note to each friend. My heart is not in it. While some good things have happened these past 12 months, they are overshadowed by the gray melancholy of too many sad memories.

A friend congratulated me last night on the progress we have made this year: we have raised $12,000 for the American Cancer Society, Caring for Carcinoid Foundation, and the Dana-Farber Cancer Institute; we have created Walking with Jane and this website as vehicles for carrying the fight against NET and CS forward; we have established a fund at Dana-Farber to support research and education about these two nasties; we have taken the first steps to try to bring more funding from ACS to bear on this particular form of cancer.

Honestly, I do not deserve congratulations for any of this. The people who have earned those congratulations are the people who came when I called–who built the website, who walked at Taunton and Somerset, who designed the t-shirts and the buttons and the bags, who baked the cookies and brownies, found the items for the drawings and sold the tickets, who have researched and written the articles in the Press Kit, who meet to think, to plan and to execute the projects, and who day after day do all the things others only see the results of.

This operation is only as good as the people who do the work–and I am eternally in their debt.

My head is pounding. This will be short and disjointed because there are two topics I want to bring up and my head hurts too much to write very long.

First, I have reviewed the paperwork for the Dana-Farber fund and have signed off on it and sent it back up to them. The official name of the fund is The Walking with Jane Dybowski Fund for Neuroendocrine Cancer. I am not quite sure how to make contributions to the fund, but they have told me all money donated to Dana-Farber in Jane’s memory will go into that fund. As further details become available I will post them here. I am sure that if you send them a check made out to the fund or to D-F with a note that it is for the fund it will get there–for those of you making year-end donations to the charities you support.

This next may seem a bit off the NET path. I was watching the PBS NewsHour tonight and they did an extended segment on extra-cellular matrix–ECM. This stuff provides the scaffolding on which new tissue can be built–apparently of virtually any kind. I first encountered this stuff about two years ago on 60 Minutes. They were talking to a doctor in Pittsburg about it because he was using it to grow a new trachea for someone who had his removed due to cancer.

The thing on PBS tonight showed just how far things have progressed with this since I saw that program two years back. Part of the piece was a profile of a Marine who had lost a good chunk of his thigh in an explosion in either Iraq or Afghanistan. Using ECM he had grown back a large part of his thigh–and while it was not pretty to look at, he did a 10-mile mountain bike trip with the correspondent at a substantial pace.

They talked with researchers at several schools and labs. One woman at Yale has grown working rat lungs that work fine until they are transplanted into the rat. They don’t work for long afterwards. But simpler tissue–the trachea, muscle, veins and arteries–all functions fine–even in humans.

What does all this have to do with NET? Nothing just yet. But they have already grown livers using the stuff–and while there are no human trials that far up the chain yet–that day will come. Imagine someone with NET that has spread to the liver–we just grow them a new one from their own cells–no chance of rejection–and do the transplant. Pancreatic NET–or even straight pancreatic cancer–grow a new pancreas.

Of course those things are years in the future–if we ever get there at all. And early detection will remain the best chance we have even then. But the possibilities are there. When they become probabilities…

There is exciting news tonight for everyone following NET and Carcinoid Cancer research and education. Two events over the last four days give me hope that we are going to beat this thing sooner rather than later.

Saturday morning I received an email from the CEO of the New England Division of the American Cancer Society. I had sent him a long letter on why NET and Carcinoid research needed to become a higher priority for the ACS. He has kicked that letter to the ACS Medical Director in Atlanta and asked him to either navigate the proposal through channels at ACS himself or suggest someone more qualified to do so.

We now have someone on the funding side of the equation at ACS aware of the issues surrounding this form of cancer and that individual is being urged to take positive actions to bring about increased funding.

This morning I had a conference call with two people from the development office at Dana-Farber. The higher ups have approved the national center for NET and Carcinoid Cancer research at Dana-Farber. They are in the process of doing the paperwork to create the Walking with Jane Dybowski Fund for NET and Carcinoid Research and Education (this is not the official name yet) to raise, initially, seed money to get the program started, and eventually to help fund the entire program.

Dr. Matt Kulke will be the head of the center which, in addition to doing research into the disease, will host an annual symposium for doctors who are interested in learning about the disease, including GPs and primary care doctors. The development office has asked me to meet with Kulke and the other members of the group to help plan and serve as an advocate. That meeting will likely take place next month.

Any money sent to Dana-Farber in Jane’s memory or raised in Jane’s name for Dana-Farber in the coming year will be added to the fund. I will let you know the details about how to make contributions once the whole thing is finalized over the next month.

We also have two college groups, one at RIC and one at BSU, organizing Walking with Jane teams for their ACS Relays this year. The region will report to us the total raised by WWJ teams over the course of the year. I am looking for people to organize teams at other schools this year. If we could start a Walking with Jane movement at Relays across New England this year–or even more broadly–that could help us with the ACS funding initiative down the road. Please give this some thought.

A year after Jane’s death, we seem to be making some progress towards raising awareness about NET and increasing the money available to go after it.

Stay tuned.

I have written enough about death these past few days. I have thought enough about it as well. I have relived Jane’s last weeks, days, and hours almost as though they were happening all over again.

Last night I watched “We are Marshall” because it is not about death, but about the aftermath of death—about the living rising from the ashes and beginning again—about building things up again with worn out tools, to quote Kipling’s poem.

The film is based on the events following a plane crash in November 1970 that killed nearly all the players and coaches of the Marshall football team. Marshall is a small college in a small town in West Virginia on the banks of the Ohio River. To say that its football team was the center of town life would be an understatement. It was so central that after the crash the college was on the verge of eliminating the program because rebuilding it might be upsetting to that community.

Only a handful of players and a single coach remained after the crash. The coach was on a recruiting trip and did not get on the plane. And injured players did not travel with the team. Even the coach was so consumed with his grief that he was willing to let the program die in the plane crash.

But one of the players refused to give up. He put together a huge demonstration outside the Board of Trustees meeting where the football decision was going to be made. It is one of the most moving scenes in a film filled with moving scenes—at least for me—at least last night.

Marshall kept its football team. In fiction, they would have risen from the ashes in a single season to become a power in the conference and a power in the country.

The truth is they won just two games the following season. Under their new coach they won just nine times in 42 games through the end of 1974. They had the worst record in college football in the 1970s.

There are coaches who say the only thing that matters are the victories in the record books. But for the kids at Marshall, every time they set foot on the field was a victory. For them, the game was not about the score—especially in that first year. Each game was a test of character and a test of heart. It was also about pouring another pig of steel, baking another brick, setting another girder as a community figuratively reshaped and rebuilt itself through its college and through its football team.

This past year has been about the same things for me—a test of heart and a test of character—an amassing of the moral and spiritual materials and capital necessary to the life and the work ahead.

In the 1980s, Marshall won six conference titles, four national championships and emerged as one of the major NCAA powers. But not one of the victories earned was as important as the victory that never showed up on any stadium scoreboard—the victory of one college student that resulted in rebuilding a community.

The days ahead are not the days Jane and I envisioned. That future is gone. The future that will be is yet to be shaped. But the heat and cold of this year has formed the brick and steel from which that future will emerge.