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.

Talk is cheap. Research is not.

This last month has made me do a lot of thinking–about the past, about the present, and about the future. It is only in thinking about all three that one can plan the road ahead. We cannot change the past–but we must live within the conditions that past has created–even if we want to change those conditions in the future. We cannot control the future, but if we want to influence the future we must first conceive a vision of what we want that future to look like. We must live and act in the present moment–and those actions are shaped both by the past that has created the present and the future we want to bring into being.

Jane’s cancer has shaped my present. Helping find answers about that cancer will shape a large part–but not all–of my immediate future. Those other things need not concern us here because I created this thing for the solitary purpose of dealing with NET and Carcinoid Syndrome.

From this base we will launch a multi-pronged attack aimed at doing two things: doubling the amount of money spent on research into this disease over the next three years–and two if we can make it happen; and raising awareness, at all levels, of this disease, its diagnosis, and the best practices for its treatment.

In pursuit of the first of these goals I will undertake the following actions in tjhe next few weeks:

First, this afternoon I will mail a letter to the CEO of the New England Division of the American Cancer Society urging that organization to make a substantial increase in its funding of NET and Carcinoid Syndrome research. In the longer term, I will suggest they use the major NET foundations as conduits for analyzing and funding research proposals so that ACS does not have to develop expertise in areas where that expertise already exists.

At tomorrow’s Walking with Jane board meeting, I will propose the idea of Walking with Jane franchises for Relays for Life across the country, and suggest to ACS that they earmark the money raised by all WWJ teams be earmarked for NET and Carcinoid Syndrome Research. Two college groups have already approached me about doing this as part of their Relays.

Monday, I will return to Dana-Farber on Monday to do the paperwork to establish a permanent fund for research into NET and carcinoid syndrome in Jane’s memory. I also hope to meet next week with the Caring for Carcinoid Foundation about doing something similar with them.

After the first of the year, I will begin the planning and groundwork for the Crawl for the Cure  program I talked about here some weeks ago.

And finally, I will begin an extensive lobbying campaign–for which I will need lots of help–to get NET and Carcinoid Syndrome back on the agenda at NCI and in Washington.

Some of the above will serve to raise awareness of the disease as well. But we will need to do more than that.

November 10 I piloted a brochure on NET locally that met with some success. We will explore ways to get that material a wider audience. (If you want to see the text of the brochure, check out the About NEC section of this site.)

In addition, we launched the Press Kit section of this website in order to provide print media outlets with materials they can use on NET and Carcinoid Syndrome. So far only a handful of papers have used material from the kit, but we plan to continue to add stories to the site and continue to publicize its existence as a free resource. My hope is to recruit someone expert in broadcast media to put together a similar package for television and radio.

Finally, I hope to put together road presentations for both laypeople and medical professionals on NET. Patient and specialist conferences already exist, but these presentations will aim for a more general audience ranging from conferences of general practitioners to civic groups like local chambers of commerce, Elks Clubs, and the like.

My apologies for the length of this post. My web advisers say I need to keep these under 500 words–and this is way over. But I think it is important to outline the road ahead–even if it takes too many words.

“I don’t want cancer to define who I am,” Jane said shortly after her diagnosis. “I am more than a cancer patient.”

Jane stayed a human being throughout her battle with the disease. There were times she got angry–times she screamed at me out of frustration and impatience. Those were the times I knew I was talking to the cancer and not my wife. She asked me once about how I stayed so cool when she got angry at me–why I didn’t scream back. I said that to her–and she nodded and smiled. She knew what I was talking about.

Not that there were not times I wanted to scream right back at her. There is an anger and frustration on the caregiver side of the equation as well. But her burden was heavy enough and I would not add to it.

“I don’t want cancer to define who I am.” Those words echo down through the last 15 months–because I have so far failed to live up to them. Cancer did not define who my wife was–but it and grief have very much come to define me. When grief, or my struggle to come to terms with it, does not have me by the throat, my struggle to understand this disease and find new ways to raise awareness about it and fight it consumes me.

“I am more than a widower,” I want to scream at the world. “I am more than a small soldier in the war against this cancer.” But that is too often what I have become: a man lost in grief, a man lost in the fight against the disease that took half his soul away. I want vengeance–but my chance of achieving that vengeance is vanishingly small.

The problem with cancer–among other diseases–is that it does not just destroy the person who has it. It often destroys, in subtle ways, the lives of that person’s loved ones–as it has sometimes been doing with me.

I lost 20 pounds from the day Jane was diagnosed until the day we buried her on the hill next to her mother. But that was the merely one of the physical effects of those days. The mental and emotional damage was far greater. I no longer have the patience I once had. Frustration is a daily companion. Where I once was truly living, I am now–to quote T.S. Eliot’s Murder in the Cathedral–too often only partly living.

That has to change–or the cancer will have killed us both.

That does not mean this work is going away. I made a vow–and I keep my vows.

But it does mean I have to let go of vengeance and become mindful again. It means I must relearn patience. It means I must let go of anger and embrace love–not romantic love, but the love that is encompassed by the word caritas.

Then I will be more than a widower–more than a small soldier in this war: I will again be a human being–and truly alive.

We live in a political world–and much as I would like to believe that politics has no role in the fight against NET, it does.

I have written before about some of the politics involved in the fight against cancer. There are political decisions being made right now in Washington, DC that will have an impact on federal spending on cancer in general and on NET in specific. I have written before about the decision in 1968 to de-fund “rare” cancers and the impact that decision had on research into NET. Anyone who wants to believe the current budget impasse in Washington will have no impact on our ability to fight this disease is dreaming–though given how little we spend at the federal level the impact on current levels likely will not be much. But our hope for more NCI spending in the next decade is likely dead.

But the budget decisions on cancer spending are not the only political things we need to be concerned with.  Ninety-seven percent of those who study climate science–including one of the leading former skeptics on the subject–are convinced global warming is real and that a significant part of that warming is caused by our actions. Most are convinced that we have maybe ten years left to right the ship or face climate change that will reduce our puny concerns with cancer generally–let alone NET–to less than a footnote. Yet less than half of all Americans now “believe” in global warming. That is down from 71 percent as recently as 2007. That change is not the result of scientific investigation–in fact, the science is stronger than ever–but rather the result of a political strategy put forth by those who have a vested financial interest in maintaining the energy status quo.

The politics of climate change matter to those of us involved in cancer research because if the world is too hot to sustain human life and human civilization then whatever we learn about cancer in the next ten years will not matter.

The politics of health care has to matter to us as well. When Steve Jobs needed information about his pNET he went to Europe, not the US. Until this year, if you wanted a Gallium scan–the most reliable way to find NETs we have–you had to go to Europe. Now, if you have the money or live close by, you can go to Houston.

During the debate over Obama’s healthcare plan some who opposed it seized on the idea of death panels, claiming the government would determine who lived and who died. But for those whose insurance is through an HMO, we already have death panels that ration care with fewer qualifications than doctors and patients. And for those without insurance…

Jane and I had the kind of platinum health insurance most people only dream of–and we paid through the nose for it. Without it, I have no doubt I would be living on the street right now–the house sold and my pension garnished to the last dime to pay for the last months of her life.

And these are only three examples. There are dozens more.

Politics matter. Oil and gas companies recognize this. Drug and insurance companies recognize this. The wealthy and powerful realize this.

We need to realize it, too.

The journey of a thousand miles begins with a single step. Sometimes that single step is enormously difficult to make. But it isn’t as if the second and the third and the fourth steps become tremendously easy as a result of taking that first step. Sometimes the intermediate steps are every bit as difficult. And sometimes the steps at the end of the journey are no

cakewalk as well.

I was reminded of that twice in the physical world this year. The first was when Jane’s sister and I took on the Walk for Hunger back in May. By the time we finished the 20 mile trek we were both pretty well done in. The last mile seemed to take forever. The sea breeze in our faces did not help matters.

The Marathon Walk in September should have been easier. I had trained all summer for it and it was only 6.2 miles longer than the walk in May. But my hips were agony at the end of that walk–and truth be told, they still give me a twinge some days.

But those walks were mentally easy by comparison to what I seem now to have in hand. The walks had a definitive beginning and ending with plenty of sign posts along the way to mark the trail. All I had to do was keep putting one foot in front of the other. Even meals and fluids were provided at regular intervals. No matter how tired I was I knew there was Gatorade, bananas and orange segments just a couple miles away at any point. And if my body broke down, there was a bus to cart me to the finish line and another to get me to my car.

But there is barely a defined starting line for taking down any disease–let alone this one. There is no set of directions for creating a foundation or growing a website. There are books and websites that pretend to be that set of directions; there are conversations one can have with those who have attempted something similar before; but the reality is that every foundation is different, every website is different, every disease is different–and every patient is different. At this far end of forever most maps are marked with phrases like “Here there be dragons” or “Terra Incognito.” All anyone can do is press on or turn back.

I am uniquely unqualified for the work I have taken on. My advanced course work is in English, not biology or medicine, not public administration or web design, not fundraising or marketing.

But I know how to study and to learn. I know how to watch and to listen. I know how to think and how to make connections between things that most people do not–at first glance–see. And I have not entirely forgotten how to put fire in the hearts of men and women.

Perhaps those skills will be enough to offset the knowledge I do not yet have.

There is nothing to return to if I turn back. And there is hope if I keep moving forward that good will come of it.

The skills in hand will have to be enough.

There is nothing pretty about the state I find myself in. For almost a year I have tried to fumble my way through the peculiar maze that is widowhood. I have joined a support group, joined an online support group, taken part in a study on grief that involved all kinds of ideas and methods for dealing with grief. I have put together fundraisers, walked far into the night going round and round in circles, walked the length of the Boston Marathon. I have tried to make this website work–have typed things and read things even on days I wanted to do no more than curl up in a ball somewhere and weep.

And I have studied this disease the way I once studied literature and writing and religion–studied it to the point that some days I want to scream in frustration for all the mistakes the latest knowledge now tells me we made. I have attempted to do what Jane and I always tried to do: turn no chance into a fighting chance–if not for her then for those who face similar challenges.

There are even days I feel like I am making a modicum of progress.

But just this very now I am in the teeth of the grief. It gnaws my bones each day because these were the last days of our life together. I have buried myself in yard work, in rearranging furniture and cleaning the basement, in doing whatever I can think of to avoid thinking about those days, this disease, and how difficult the path ahead is if we are truly going to begin to find answers to the multiple riddles NET clearly presents.

There have been days these past two weeks when it has all seemed far beyond my strength–and I have questioned whether or not doing any of this makes any sense. Someone said to me this weekend that Jane would kick my ass if I did not continue to do this. But the truth is I think she would kick my ass for doing it. One of the last things she said to me before she went into the hospital was that if she did not make it she wanted me to move on with my life. There are times all of this seems to be preventing me from doing that. The perpetual what-ifs make me crazy and trap me in a world that I do not like–and sometimes makes me a person I do not like being around.

And then I get a note like the one I got last week from someone who has NET and has found what is here useful–for whom the things we have learned since Jane’s diagnosis are making a substantial difference.

It makes me pause. We  helped someone. We helped someone who was living in the dark the way we were a year ago–We made their life just a little less dark.

So I need to keep doing what I am doing–even on those days when no one seems to be paying attention. I just have to find ways to do it without making myself even more crazy than I am.