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.

There is a phrase I would like to see eliminated from conversations about NET: that it is less deadly than other forms of cancer.

The latest media outlet to use this line is the New York Times in a story today on the death of Steve Jobs.  While it is true that someone diagnosed with NET is more likely to be alive five years after diagnosis than those with other forms of cancer, the disease is no less fatal in the long term. There is no cure for any form of NET cancer unless it is detected very early in the process. An operation at that stage may result in a cure if the cancer has not spread into the surrounding tissue.

If it has spread all we can do is try to slow it down. But we cannot stop it. It will progress. The symptoms will gradually move from annoying to crippling to debilitating to deadly. Each stage will take longer, perhaps, than it would were it some other cancer. But the end will most likely not be the quick clean death we all dream of. Instead it will strip away control of the patients bodily functions, strip away pride, strip away dignity.

I lived with Jane’s cancer for nearly a quarter century. She lived with it for 30 years. And for 30 years it crippled her.

On one of our first dates I suggested we have something to eat after the movie. It was an innocent suggestion–something I had done  many times on dates before. And Jane went along with it. But she paid for it the next day. She told me later that any time she ate anything after 4:30 or 5 p.m. there was a substantial chance she would have stomach problems the next day.

We never ate late again after that if we could help it. But even then she would get hit with intense bloating and cramping out of nowhere. Over time those episodes became more and more frequent–and more and more intensely painful.

Over time the other symptoms evolved and became equally debilitating: intense flushing, insomnia, constant diarrhea that eventually became uncontrollable. She tried to fight through them. But eventually they became overwhelming.

I know when her body died. But when exactly did the power of her symptoms kill the person she was? That is a question I can never answer.

Every cancer is deadly. They are just deadly in different ways.

I just sent off the draft of a letter I am writing for the New England Division President of the American Cancer Society for final medical vetting. It has taken since July to work my way that far into the bureaucracy. And he is not the end of that climb. There is more bureaucracy to be scaled before I can actually talk to someone who has the authority to make a decision.

Don’t misunderstand me. I like the guy. He listened patiently to what I had to say at the Relay Summit in September. He called me when

he said he would. He has given NET a sympathetic ear and has encouraged me to reduce the reasons ACS should seriously increase its funding of NET research to writing so that we can carry the fight further up the slope.

But I am getting a first-hand look at the politics involved in cancer funding–and what I am seeing is not pretty.

A friend suggested again this weekend that I need to read The Emperor of All Maladies, a book that came out last year on cancer and the people who are trying to unravel it. He tells me it has an extensive explanation of the politics involved in the process. He tells me that it is an ugly story.

I keep getting whiffs of that ugliness. I encountered it at the Summit–a place I would prefer to think better of. But one of the last presenters started talking about the Relay for Life as a brand–which did not bother me enormously because I understand enough about marketing to know one of the keys to success has to do with how recognizable your cause is to the average person on the street. What bothered me was when she talked about other cancer organizations as competition.

Cancer is a nasty disease. Those of us fighting it need to cooperate with each other. We don’t have time for turf wars, blame games or credit taking. The more we get caught up in those kinds of things the less likely we are to find the answers we have to find in order to accomplish anything substantial.

But the way we fund cancer research leads to exactly those issues. There is a finite amount of money available in any given year. Who gets how much of that money comes down to political decisions based on how much noise a particular group can make on behalf of its interest.

That is how NET ended up on the short end of the federal funding list in 1968. It is why it has remained there ever since. And it is why we have such trouble getting anyone–whether in government or in charitable institutions–to take funding this form of the disease to the next level

So November 10 is an important day for all of us. It is the day we need to make as much noise as possible. We need the outside world to pay some attention–and the only way to do that is to be such a squeaky wheel that we finally get some oil.

It is Halloween.

This was one of our favorite holidays when Jane was alive. She loved handing out candy. And every costume got an, “oh so cute,” “very scary” or “you make that look good.”

She would carve ornate pumpkin designs, create novel tombstones for the yard, and don the tall black witch hat we found years ago. Some years we would hide a tape player behind the bushes and run tapes of spooky sound effects.

We entertained hundreds of kids and their parents some years.

But last year the swelling in her legs was so bad she could not get up and down the stairs to the door. Instead she sat in the window and watched the ghosts, goblins, witches, pirates and aliens running up and down the street looking for sugar-filled loot. I sat on the stairs and handed out the candy. Earlier in the day I had set up the pumpkin lights and the boneyard and the small headstones filled with their bad puns.

We both knew her health was failing–that this might well be the last time we shared this holiday. I fought back tears between customers. When I came up the stairs at one point it was clear she had been doing the same.

In 12 days, the call would come to go in for heart surgery. They would replace the two valves in the right side of her heart that the excess serotonin had eaten away. The operation would take ten hours

But the next morning she woke up strong and optimistic. Within 48 hours they would be talking about sending her upstairs to the step-down unit.

In less than a month, she would be gone–killed by a disease no one has heard of–except for those who have it, their families, and a handful of medical professionals who have made it their cause.

I dug out the artificial pumpkins we put in the front window each year this weekend. I found the Halloween signs and put them up, too. But the tombstones and the boneyard just didn’t feel right this year. And I am trying to greet the little trick-or-treaters with the proper spirit and phrase-work when they come to the door. But, honestly, my heart is not in it.

Instead, I fight off the tears. The trick-or-treaters will not understand them. This is their night–and I will not spoil it for them.

Instead, I think about the patients, doctors, and others I have read about the last two weeks as we prepare to release the package of stories for newspapers and other print media on NETs. I think about their struggles and their desires for another Halloween, another Thanksgiving, another Christmas, another New Year’s, another Valentine’s Day, another Easter, another summer, another fall for themselves or the patients they serve.

And I think about the patients who don’t know what they have yet–who have been misdiagnosed–or not diagnosed at all. And I think about how important it is that we get the word out about the symptoms of this disease so that when a doctor sees IBS he or she knows to keep checking until they find the cause of those symptoms–and knows that one of the first things to check for is NET.

Ninety-five children have come to the door so far tonight. It is about 7:20. I will see another 25-30 before the night is out if things run true to form. I can hear the music wafting over  from my neighbor’s heavily decorated yard. I’ve heard The Monster Mash, the themes from The Addams Family and Ghostbusters, and all the other semi-spooky tunes in the lexicon. Maybe a year from now I will again be able to get in the real spirit of the thing.

But for now–tonight–I am fighting horses disguised as zebras. And those creatures are far more scary than any costume a child can wear to my door.