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.

There are many ways to die. I have spent the last 36 hours learning that again.

One year ago tomorrow, I lost Jane to NET Cancer and the Carcinoid Syndrome it often causes. I expected a quiet weekend where I could wrap myself around that piece of pain and come to terms with it.

Then there was a cryptic Facebook post Wednesday night that finally unraveled into the death of a 38 year old former student who had dedicated much of her adult life to the service of others. She ran, she biked, she was in terrific physical condition–and she died of a heart attack no one could have seen coming.

Yesterday, I came home from an appointment to pick up the mail before driving up to Bridgewater State for a reception to honor students receiving scholarships–including one being given in Jane’s memory. There was a card from a dear friend who has fallen off the earth in recent weeks. The card told me why: her husband has been hospitalized twice since I saw the two of them in late September–and had been nearly hospitalized on a third occasion. He had had a mild heart attack in late August or early September that I knew about–and had some kind of kidney issue last winter.

When I got home last night I was greeted by another Facebook note, this one from another old friend. Her housemate died earlier in the day. He had known his time was limited–and he died at home–as he had wanted.

For Valentine’s Day in 2010 I wrote Jane a poem. She had just come through a bout with the H1N1 virus that had nearly killed her. It had reminded us both, powerfully, of our own mortality. That poem seems, given the circumstances, the right post for today.

For Jane, Valentine’s Day, 2010

Death stalks these bodies–

Imperfect temples to divinity–

Flawed vessels of immortality–

Hair grays,

Vision fades,

Teeth crack,

Skin wrinkles,

Joints ache,

Muscles atrophy,

Bones thin,

Organs weaken,

The mind dulls–

And still we love.

Immortality stalks these souls–

Perfect temples of divinity–

Flawless vessels of En Sof’s  breath–

Mirror that joy,

Mirror that youth,

Mirror that ageless age,

That sprouts the seeds

Of e’er eternal us

And sings in us

The dance–

The word–

And still we love.

We stalk Death and slay.

We stalk Life and live.

Children of divinity,

We build imperfect temples,

Create flawed vessels,

To sail us home

To our perfect temples

And to our flawless vessels

And the dance

And the song

And the word

And the one–

And still we love.

We stalk the one.

The one stalks us.

Temples are but bits of stone–

Vessels are but bits of glass–

Divinities but bits of thought–

And words but bits of sound

Or bits of ink upon a page–

Death flees.

Gods quiver.

Temples fall and vessels crack.

Still light emerges–

Time begins and ends–

And still we love.

–copyright Harry Proudfoot, 2010

I am not much in the mood for this.

One year ago today was the last time Jane was in good shape during the daylight hours. She had started physical therapy therapy again the day before and had her sister and two friends come up from Fall River to see her. She had also begun to learn to talk with her tracheostomy.

Today we had another physical therapy session. But she was frustrated and angry at the pace, tired of being trapped in that hospital room in that hospital bed, and weary with the embarrassment of the frequent diarrhea. She asked me to carry her to the bathroom that night, but I had to tell her I couldn’t because of the feeding tube and the wires that monitored her vitals.

Later, she told me she wanted to go home. She asked me to get the car and sneak her out of the hospital. I had to tell her she wasn’t yet strong enough for that–but that in a couple of weeks they were sure she would be in rehab and that by February, she would be home and able to get up and down the stairs on her own.

I tried to get her to sleep, but she couldn’t. The nurse told me I needed to get some sleep–and that if I slept she was sure Jane would, too. I woke up several times during the night–Jane was wide-awake every time. And that worried me.

In the morning I waited for rounds, then went to get breakfast. I didn’t like eating in front of her, but she made clear she wanted me there that morning. After I ate, we got her out of bed and we watched a Frasier rerun. As it ended, Jane started to shake a little–and the nurse came in and asked her if she was tired. Jane nodded her head.

“Do you want us to put you back in bed so you can take a little nap?”

Again Jane nodded.

We put her in bed and she soon fell asleep. I sat next to the bed and held her hand while she slept and I tried to read a little bit. I remember being thankful that she was finally sleeping. I thought about Christmas and wondered what I should get her. We had been too busy all fall to do much shopping or thinking about Christmas. The house was still decked out for fall. Her on the mend was all I wanted.

About an hour later, the nurse came in. “I’m getting a strange blood pressure reading,” she said. “I think the line is faulty again.” We had had problems from the start getting blood pressure readings, even with a pediatric cuff. And if Jane moved at all–and sometimes even if she didn’t–the sensor would stop working.

She took the blood pressure manually–then took it again. Jane slept through it, as she often had before.

In a little while one of the doctors came in. By now it was clear something was not right.

Just before noon, Jen, Jane’s oncologist came in. Jane woke up when Jen started to talk. “All we can do now is make you comfortable.” Jane went back to sleep. Neither Jen nor I could tell how much of what she had said Jane had understood.

Jen had to see patients that afternoon. “My body will be there,” she said, “But my heart will be here.”

Max, the intensivist, came in a little later. He repeated what Jen had said–that we were out of options and that all we could do was make her comfortable–and let her go the way she had said she wanted.

“But if she wakes up again, you have to make sure she knows what is happening,” he said.

Just before 6 p.m. she woke up again.

I told her where things stood. We cried. We said good-bye. At 6:05 she drifted off again. I kissed her on the forehead.

“Good night my warrior princess,” I whispered to her.

Then I took her hand and steeled myself for what lay ahead.

I talked to her and read to her and shared stories about her with her friends and her nurses and her doctors.

Just before 8 p.m. the next night, she took one last breath and let it out. Her heart stopped–and she was gone.

I took her wedding ring off her finger as she had told me to. I looked at the ring on my finger. She had told me to take it off if she died.

I couldn’t do it.

I thought I would take it off after the funeral. I thought I would take it off on our anniversary.

I couldn’t do it.

Just before 8 p.m. on Saturday…

People sometimes ask me how they can help with research and the like. Next week, after I cross some t’s and dot some i’s, I am going to write about a number of ways people can get involved and make a difference. But yesterday afternoon I got a note from the Caring for Carcinoid Foundation about something that deserves an immediate mention. Below is what they wrote:

We had a Walking with Jane board meeting Saturday night. The five of us had a meal together and then adjourned to the living room to plan this year’s Relay for Life stuff and talk about the other things we want to do.

We walked through the implications of the last New Directions piece that I posted here late last week and Scott suggested we needed to get more involved with educating people about this disease. He recently finished The Emperor of All Maladies–a sort of biography of cancer and humans’ battles against it–and was struck by how important early detection remains in terms of long term prognosis for any cancer–let alone his one.

The discussion that followed left me thinking about the whole issue of making people more aware of the disease and getting both doctors and patients more educated about it. Monday I had a meeting at Dana-Farber to talk about the permanent fund I want to set up in Jane’s memory. I continued to think about what we had talked about on the drive up to Boston. By the time I got there I had decided the purpose of the fund needed to be focussed less on research and more on making sure what we know gets into the hands of primary care practitioners and patients.

After talking with the person from the development office, she went off to do some research on those issues. This afternoon, I got an e-mail from her about a conversation she had today with someone there that had truly excited her. We are setting up a conference call for next week so they can fill me in on the details of a new program for educating folks about NET.

On the trip back from Boston yesterday I continued to think about the issue of getting people to know more about NET. There is a lot of information on this site on the resource pages that people can use to learn about NET but, frankly, those lists of resources have become a bit daunting for someone new to the disease.

As I have said before, I read or watch everything before I post it on the site. The result is I know an awful lot about this particular brand of cancer. One of the things we talked about Saturday night was me putting together a couple of presentations on NET for general audiences in the local area.  But it occurred to me yesterday that I could probably also draft a series of pieces for here that could serve as a basic introduction for those of you coming to this for the first time.

Putting those pieces together will take some time–don’t expect to see them here tomorrow–in part because I will want to have each vetted for accuracy before I post them. I will post them on this page as I get each done and then move them into the About NET section afterwards so that people new to the disease will be able to get a basic understanding of the disease without being overwhelmed by everything in the Resources section. Those pages will not go away. I only intend to put together a primer that will get people started.

Let me know what you think. You can contact me at the address below.

AIDS Awareness Day was Thursday. There was the annual conference attended by luminaries in the field from around the world. Newspapers covered the event on their front pages. Television news shows also gave it great play.

I remember the early days of the pandemic. We had no idea what was causing it. We had no idea how it was spread. And we certainly had no idea how to cure it once you had it–or even how to slow it down. I remember thinking at the time, “Is this the beginning of the next Black Death? We need to figure this thing out–and we need to do it in a hurry.”

People I knew died from AIDS. The school paper I was advising at the time interviewed a teenager who was in the hospital with it. One of my best friends had a brother who discovered he was HIV positive.

Today, there are about 1.2 million cases of HIV/AIDS in the US. Eighty percent of those people have been diagnosed. The other 20 percent still do not know they have it.

Last year, the US government alone spent $2.9 billion on AIDS research. Additional money was raised privately.

There is reason to believe that as many as three million people in the US have NETs as I write this. Significantly less than one percent of them know they have it. We have few reliable tests for the disease. We do not know what causes it–and unless we catch it very early, no idea how to cure it.

Last year, we spent less than $2.9 million on NET research total–including all federal and private monies.

On NET Awareness Day on November 10, no major newspaper or major broadcast medium  in the US ran a single story on it.

I don’t want to stop spending money on AIDS research. I don’t want to stop spending money on AIDS/HIV education programs. And I don’t want the media to stop covering the problem. Those things are too important.

But NET research, education and awareness programs are just as important.

If they were funded and covered that way maybe I would not be decorating the house for the holidays alone this year.