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.

In the hospital one day when they had thrown me out of Jane’s room so they could change her bed clothes I encountered a couple. The male had been through open heart surgery and was brimming with advice about what I needed to do to help Jane recover. His wife sat through the conversation nodding her head. Then the husband got a phone call.

As he wandered off she leaned in towards me: “His advice is good. But he

does not know what it is to be a caregiver. He does not know the challenges in that. I don’t know what it is to be a patient. But he does not know what it means to be us.”

She told me the hardest thing was to stay positive all the time. She urged me to watch as many comedies as I could. She said, “Even when this is over, the most important thing for you to do is to laugh. Get every comedy you can find. Watch one every night. If you don’t laugh, you will make yourself sick.”

When Jane died, I did not have the energy to go looking for comedy DVDs. Nor did I have the desire to laugh. In January I tried watching sitcoms on TV. I tried the British comedies on PBS. Once in a while I would smile, but it was as though laughter had left the building. I went out looking for DVDs late in the month. And slowly, I rediscovered the power of film and of comedy to take me out of my grief–if only for a few hours.

The healing power of laughter has become increasingly important to me in recent weeks. I suspect it will become even more so in the month ahead as I re-encounter the last testing days of Jane’s life.

But sometimes, out of nowhere, a film will reduce me to tears. About two months ago I watched Shakespeare in Love for the first time. I laughed my way through scene after scene, finding the building of the plot of Twelfth Night in the background fascinating, in part because it is a play I developed a real fondness for after acting in it a quarter century ago. But at the end of the film, with its images of the shipwreck and the total loss of the woman Shakespeare loves, I lost my mind for a time. I cried mindlessly and uncontrollably for over an hour.

Last week, I watched The Fisher King. In it, Robin Williams’ character has lost his mind following the death of his girlfriend. Then I watched Patch Adams, and discovered it too had a great loss in the middle of it that struck too close to home. And last night I watched Good Will Hunting with its psychologist who has lost his wife to cancer two years earlier.

Jane and I did not see these films when they were in theaters because we were too busy with teaching and with life. Now they seem like notes from her, reminding me of what I have lost, certainly, but also reminding me of the power of both tears and laughter.

To every thing there is a season–and a time to every purpose under heaven. –Ecclesiastes 3:1

For me, the 28 days between the decision about Jane’s surgery and her death were about being strong and positive and honest with her about what we knew when we knew it. It was a time of testing and trial for both of us.

These 28 days this year are proving to be a time for grieving–but also a time for reflecting. I am trying to keep the grief out of these posts and provide the lessons of the reflections.

But given some of the responses people are sending me either personally or through Facebook  I must be sounding pretty depressed, though that is not the intent of the exercise.

As my grandfather used to remind me, intelligence is learning from your own mistakes–wisdom is learning from the mistakes of others–and while I appreciate the kind words and thoughts so many of you have directed my way, the best anyone can do for me is to learn from what Jane and I experienced. For doctors and researchers that means gleaning everything they can from Jane’s case about the disease and how best to treat it. If they can–as two of her doctors have told me they do–find inspiration in the way she faced this and who she was, that helps as well.

But there are lessons here for the rest of us as well: the importance of talking about death and our end-stage wishes before we can no longer express those desires; the importance of getting regular check-ups, of going to the doctor when we know something is wrong, of not settling for a non-diagnosis like IBS; and most importantly living a life in which love, honor, and forgiveness are the forces that drive our actions every day.

Honestly, my father did get it right when he told me the night she died that now I truly knew what he had experienced when my mother died: there is nothing people can say that will make this feel any better.

But there are things beyond words that do help: every time someone has that end of life discussion, every time someone goes to the doctor about what is bothering them, every time a doctor keeps digging for answers–looking for zebras when that is the right thing to do–I feel like her death has made a difference in the lives of others the same way her life did.

And when I see someone show the kind of unconditional, forgiving, honorable love that she gave to me, to those around her, and to the world, it raises my spirits and fuels the fire within me. Those small and random acts of kindness do what no words can. They erase–if only for a few moments–the grief I feel and remind me that there is a spark of the divine in each of us that can flare up at any moment into a roaring blaze.

If you are a childless widow or widower you have no need to read what follows. You know about loss: you know all about the firsts and the lasts; you know all about the roads taken and not taken; you know about the guilt and the anger and the emptiness; you know about being too young and too old at the same time; you know too much about death.

Or maybe you should read this–because it is about the struggle to define yourself all over again; it is about trying to find or renew your purpose; and most of all, it is about the importance of regular check-ups and going to the doctor when something seems wrong.

Today, I tried to expand my presence back into one room of our house. The study had shrunk down to a small table in the corner where this computer lives. It is where I do the writing and the design-work and the internet surfing this new job requires of me. But the rest of the room had slowly reduced itself to a small trail maintained purely so I could open a window–and now with cold weather arriving that trail was on the verge of vanishing. So I sifted through the papers and magazines and assorted detritus–and while there is still a bit of clutter, I am no longer embarrassed by it.

In the process I came across the reasons I have put the job off–the little bits of Jane’s struggle buried among the clutter: the notes she had written herself about conversations with doctors on the phone, the file from Hudner started a few days after the diagnosis, then abandoned for a different file when they sent us to Dana-Farber, the poem the doctor in charge of the ICU gave me on the morning we weaned her off the machines, the card she never wrote on but left behind just in case, the pages and pages of notes I took at Dana-Farber–and the pieces of the aftermath: the program from the funeral, the guest book from the wake, the pile of sympathy cards.

I feel like the unluckiest and luckiest man in the world in the same heart beat: unlucky to have lost so irrevocably the woman I love in a manner so crushingly unfair–and so lucky to be surrounded by so many good and caring friends.

I cried a lot today. I raged a lot today. Last night made 12 months since we slept together for the last time. Today made 12 months since her admission to the hospital.

I cannot tell you how many times I asked her to go to the doctor about the diarrhea, about the stomach pains, about the flushing. It was a lot. But she always had a reason not to go. And now she is gone.

Learn this: Get regular check-ups, ask questions, tell the doctor truthfully about oddities in your body, and don’t be satisfied with empty explanations.

There is no promise that if you do everything right you won’t die before you want to–but your odds will be somewhat better.

And another year–or twelve–will mean everything to those who love you.

I could spend the next 28 days writng about Jane’s last days: how today was about deciding when to schedule the heart surgery, how tomorrow was about saying good-byes–just in case–how Monday was about getting to the hospital and Tuesday about the heart catheterization and the valve replacement surgery.

And some days I may do that still. But not today.

I slept most of today. Part of that was simple avoidance. But most of it was sheer exhaustion. We put out the 10,000+ words in the press kit and tried to market them to newspapers all across America this week. I designed and published a brochure based on the “Is it IBS?” page on this site. I distributed posters for ACS to places all over Swansea, Somerset, and Fall River. I tried to turn Facebook into a massive zebra herd for Worldwide NET Cancer Awareness Day. I went in for my semi-annual blood work and check up, got my flu shot. Visited another doctor for one type of screening and set up an appointment for another. (No worries, folks: just time to kick the tires and check the fluid levels on this machine as it approaches 60.) And I talked to every doctor who would listen to me about the importance of knowing the symptoms of NET. I’m exhausted just typing it all out.

Next week will be just as busy: two ACS meetings, a letter to finish up to ACS about NET, a couple dozen thank you notes to write, and a pile of mail to get through.

But today I need a break from all of that. I need a break from cancer and from grief. I need to think. And most of all I need to remember the good times before NET stole both my wife’s life–and mine.

Make no mistake, losing a spouse is like nothing else you can experience.

It is the reason that I will go back to work on killing this disease tomorrow and the next day and the next day… Life is a precious thing. And I want all of you to have more days with those who are precious to you. Because when you lose the other half of your soul your life, too, will stop for a time–as though you, too, had died.

Today, I need to recharge the batteries. Today I need to remember watching her slide down the aisle of the church like a pearl though honey on our wedding day, our first climb up the side of Mt. Lafayette–and our race to the bottom to find a toilet. I need to remember our decision not to get a Christmas tree the year we moved into this house because it was too close to Christmas–and her buying a tiny pine tree in a pot to surprise me with so we would have a tree after all.

I need to call back to me all the joy of our life together so that tomorrow I can get back to the work that needs still to be done.

And so that I can again find myself among the truly living.

The beginning of the end began 12 months ago today.

It began quietly enough. We got up early and made the drive to Dana-Farber. The traffic was better than usual because of the Veteran’s Day Holiday.  But Jane had had more difficulty getting down the stairs at home. Her legs were often swollen with fluid, but the last couple of days the fluid had begun to build up in her arms again. Her albumin levels, we would learn later that day, were crashing. One of the things albumin does is keep the liquids in the cells where it belongs. Our last appointment of the day was with a nutritionist who was going to help design a diet to boost those levels–and hopefully reduce the swelling.

We had the regular blood draw, then went to see Jen Chan, Jane’s oncologist. We were all concerned about the build up of fluids in Jane’s belly and talked about doing a procedure on Monday to try to draw off some of the fluid. We went to see Javid Moslehi, Jane’s cardio-oncologist. The walk to his office was exhausting and we stopped at a bench about half way there so Jane could catch her breath. I had offered to push her in a wheelchair but she had made very clear she wasn’t going there.  Javid was worried about the fluid build-up as well.

We made the trek back to Dana-Farber to have her monthly injection and meet with the nutritionist. The injection was a simple shot in the buttocks. Then we met the nutritionist. She talked about the need to consume more protien. Jane discovered Greek yogurt was full of the stuff–and she loved Greek yogurt.

When the woman left, we were ready to go home. Then Jane stood up. Her pants were soaked through. She was leaking fluid from the injection site. I wanted to get someone to look at what was going on, but she looked at me with those big brown eyes full of pleading: “I just want to go home,” she said. “Please, just take me home.”

Another man might have done something else. For a time after her death I was angry with myself for not being more insistent, thinking that if we had stayed things might have been different. I have since figured out that it was already too late–that there was really nothing I could have done that would have saved her–and that taking her home meant she got one more weekend in the home that she loved–gave us time to say the private good-byes while she could still talk.

The drive home was awful. The traffic was stop and go from Brockton to Taunton. I had to help her out of the car when we got home and carry her up the stairs.

This morning I had trouble getting out of bed. I cried a bit, railed against the injustice of it all, got angry about all the things that made her death inevitable.

And resolved again to find a way to kill this foul disease.

Let me tell you about, penguins, rocks and Walden Pond.

I grew up barely a dozen miles from the place Henry David Thoreau made famous by building a cabin that would fit into our bedroom with a bit of space left over and living there for about a year. Today, it is a state park largely because of Thoreau’s residency.

Frankly, Doonesbury got it right when he caricatured it back in the 1970s with Walden Puddle–a place out in the backyard where Zonker used to sit between big games trying to figure out the answer to life, the universe and everything in the days before Douglas Adams gave us 42. The place is really very small for the amount of attention it gets. The railroad tracks still run by within shouting distance of the site of Thoreau’s cabin and on a spring or summer day there are still those who fish along its banks.

I took

Jane there on one of our first dates. We

picked up two smooth stones as we walked to the far end of the pond where Thoreau’s cabin once stood. Today there is a cairn that pilgrims from all over the world bring stones to every year. We added ours to the pile that I always think should be so much higher than it is. My stone joined the others I had placed there over the years. For Jane, it was her first, and I think she felt a little foolish about it. It became one of our little rituals, however. There are a number of stones from each of us there now.

One time, before we got married, we were on our way back from the cairn when we started talking about penguins. One particular type of penguin has an almost human ritual: the male brings his intended bride a rock. If she accepts it, they become engaged. He then brings her more rocks from which she builds their nest.

I had already asked Jane to marry me and she had said yes some months before. But now I bent down and picked up a small stone and handed it to her. She smiled, put it in her pocket, and we continued to walk.

She kept that stone. Sometimes I think she treasured it more than her engagement ring. She kept it on her desk in our home. It is still there–along with some others I gave her over the years. From those stones we built our life together. They were a constant reminder to us both that we were building something bigger than ourselves–and something more enduring.

Each time I visit her grave I put three stones at its base. Two represent our souls. The third represents the one body we now have between us. Together, they remind me that we still have work to do in this world–and of the wordless promise we made each other on the shores of Walden Pond.

There is an adage among teachers that once a student has learned to do something the wrong way they have to be retaught the right way seven times before they get it right. Apparently that rule of thumb applies outside the classroom as well.

Steve Jobs has been gone nearly a month. The night he died everyone got the message he had died of pancreatic cancer. That the major media outlets almost uniformly got what he died from wrong really bothered a number of us in the NET community. I quickly put out a press release and went to the trouble of looking up the email addresses of well over 100 major newspapers, radio and TV networks so that each one could know where the error was and fix it. I know several other NET organizations did similar things.

And some media did make the correction by doing lengthy stories on what the actual form of cancer was.

But most did little or nothing to fix the popular misconception. After all, it was, apparently, just a semantic difference in their minds.

The head of Google said just over a year ago that 99% of what is on the Internet is crap. I had my nose rubbed in that fact this morning.

Every few weeks I do a search on all four major search engines for NET terms. I don’t do this because I think I will find some stories I have missed–though I do turn up a few in the process. Rather I do it to see to what degree we have been successful in moving walkingwithjane.org closer to the top of the lists. It’s called SEO–Search Engine Optimization. And the only way to really know if it is working is to go look periodically.

One of the things I tested this morning was “Steve Jobs’s Death.” Virtually every story on page one of every search named the cause of death as pancreatic cancer.

Apparently, shock jock Howard Stern was so moved by Jobs’ death from pancreatic cancer that he has made a substantial donation to an organization doing research on pancreatic cancer and has sponsored the creation of a piece of jewelry, the sale of which will benefit that organization. That it does not do research on pancreatic NET does not lessen his charitable impulse–but it does mean the money will be spent on something other than what actually killed Steve Jobs.

November 10 is the second annual Worldwide NET Cancer Awareness Day. Let’s hope it really won’t take seven of them to get this disease the awareness–and respect–it deserves.