We need to stop thinking about neuroendocrine tumor cancer and carcinoid syndrome as a “rare” form of cancer.

I am not suggesting we abandon the disease’s legal status as an orphan or rare disease. Financially, we cannot afford to do that. I am suggesting that we have to stop thinking about it that way. By thinking about it being rare, we create a raft of excuses for not pursuing it as aggressively as we do lung cancer, breast cancer, prostate cancer, cervical cancer–or any of the big name cancers. It may turn out that NET cancer is rarer than other cancers, but it does not make the suffering of its victims any less.

And I think we need to stop acting as though the word “indolent” is a positive attribute–that it means we need be in no hurry to find a cure for the disease because people can live with the disease for a long time. That slow growth makes the disease both harder to diagnose and, after a certain point, virtually impossible to cure with what we have to work with. We can delay the ending then, but we cannot stop it. Its slow rate of growth only means the patient suffers from the symptoms for a longer period of time.

I’d also like to eliminate the word “benign” from our vocabulary when it comes to tumors in general, but about NET in specific. I’ve heard “non-active” NETs called benign because they are not pumping out  hormones and peptides. The truth is, we do not know enough about NET cancer to know if those non-active tumors are benign or not. In fact, there may be some evidence emerging that even when an NET appears to be doing nothing at all, it is doing something. The research on aggressive forms of prostate cancer, for example, seems to show non-active NETs spurring the growth of the prostate tumors. And NETs, active or inactive, have shown a propensity to spread from their origin points.

The problem is, we just don’t know enough. We don’t know whether the disease is rare or not, in part because we have few reliable methods of detecting it, in part because primary care physicians are unaware of its existence, and, in part, because many people who die from the disease are labeled as having died of something else entirely. NETs often messes with other organs and how they function. For example, my wife’s disease destroyed the valves in the right side of her heart. Absent the discovery of the tumors in her liver, we would have been told she died of heart disease. How many cases of idiopathic right side heart valve disease are caused by NET/CS? We just don’t know. There is an NET form of breast cancer. There is an NET form of lung cancer. Many of those deaths are labeled as breast cancer or lung cancer deaths. We don’t know how many.

But whether the disease is rare or widespread, the suffering of the individual patient is real. Their deaths are real. The impact on their families is real.

For them, there is no solace in a pink zebra. They need a cure. And they need it sooner rather than later.

As I promised, I took last week off from thinking about cancer, the Relay for Life, and Walking with Jane.

At least I tried to.

The world intervened a couple of times: a former student’s son was diagnosed, tested, and operated on for a slow-growing form of lymphoma. One of the members of our Relay planning committee had a heart issue. And when I went out to see a former student perform, conversation naturally touched on Walking with Jane.

But for the most part, it was a quiet week. I read a really fascinating book about the Chinese discovery of America, watched the first season of Mad Men, and season six of the new version of Doctor Who. I even went to a first-run film in an actual theater.

Still, Jane’s absence hung over the whole week. The first part of the week is lost in a fog of tears and exhaustion. When I sat on the deck, I missed her. When I came up from mowing the lawn, I missed her. When I came in from my walks, I missed her. We were supposed to be doing these things together. Retirement was supposed to be different from what it has turned into. For the last 24 months, I have fought this cancer, first with her–and since December 10, 2010–without her physically by my side.

I spent last week as a retired widower. It was, in many ways, good for me. There was nowhere I had to be, no meetings I had to attend, no people I had to put on a strong face for. I cried when I wanted to cry, got depressed when I wanted to

be depressed, and slept when I needed to sleep for as long as I wanted to sleep.

Something happened somewhere this week. I don’t know when. I don’t know why. I don’t know how. But–at least for a few moments–I came to terms with the loss I have suffered. There is, as I write this, a genuine peace I have not felt since before the H1N1 started the cascade that ended 14 months later in that hospital room at Brigham & Women’s Hospital in Boston with Jane’s death. I do not expect that peace to be permanent. I have learned enough about grief in the last 18 months and 21 days to know better. But the moments have left me feeling better than I have in months–maybe years. And that has re-energized me for the road ahead.

Today, Relay moves to the back burner. There are still tasks to be done there, but they will not require my full attention. Today, I shift focus from cancer in general to NET cancer and carcinoid syndrome in specific.

I am not who I was a year ago. I have learned a lot. I have experienced a lot.

This week, I have rested.

Now, we move forward.

(One quick note: while I have rested, the elves who work on this site have not. At the bottom of news posts we now have a place for you to comment. These will be monitored to keep the spam out. I know, on this subject at least, we can all be civil. 🙂 )

Despite heat, humidity, thunderstorms, cloud bursts, a stuffy, crowded, overheated gym, and bugs galore, something extraordinary happened Friday and Saturday at the Greater Fall River Relay For Life.

As regular readers know, I am the chairperson for the 2012 Relay. Under normal circumstances, I post here nearly every day, but this week my duties as chair for that group ate every minute of every day–and never mind that I also captain our Walking with Jane team for that event.

Thursday, local temperatures were in the upper 90s with a heat index well over 100. While Friday was cooler–temperatures were in the low to mid-90s, the humidity kept the heat index over 100 throughout the afternoon. I went around the track over the course of the afternoon as teams set up their individual sites to visit with each team for a few minutes. I encouraged everyone to drink plenty of water–we place free bottled water around the track–and to take a break every half hour or so. I also reminded people that we had a medical tent on site and that they all needed to keep an eye on each other for potential heat-related issues.

I went through nearly half a case of water myself on that walk–and I was still barely keeping up with what I was sweating out.

Just before 4 p.m., we got word that we might be facing serious thunderstorms around 6 p.m., just the time we were supposed to do opening ceremonies and the survivor lap.

And just as the survivors arrived, the rains began.

Relay is a rain or shine event, however. A little rain is nothing compared to the assault cancer makes on the human body. We prepared for the National Anthem.

And then there was a bolt of lightning and the crash of thunder. We evacuated the field. We had decided earlier that we would send people into the gym and cafeteria if we had to get people off the field. What we did not realize was how quickly those areas would present problems of their own.

Just before 7 p.m., we asked people who were not members of teams to leave. At 7:15, we were on the verge of canceling the rest of the event. Then the rain eased.

I went into the school and announced we were going on.

People cheered–and moved back to the track. I fully expected many people would pack up and leave. There was more rain in the forecast and lots of water on the field and track. And, to be honest, a few people did.

But the vast majority stayed. They knew we would not raise as much money as we had hoped–the people who visit and make most of the purchases had gone home. But we were here to celebrate the progress against cancer. We were here to remember the people we had lost. We were here to show the world–or at least our corner of it–that we were going to find ways to fight back.

And a little heat, humidity, rain, and lightning were not going to get in the way of that.

When the sun rose and another band of showers started to move through–this one without thunder–most of the teams were still there. They had walked through the night, played some bingo, some Relay Scrabble and some Relay Poker.

And they had done something more as well.

Before the rain, we had been 95 teams individually determined to raise money to fight cancer. When we emerged from the gym, those 95 teams had become a single unit with a common goal. I had been amazed by the energy and dedication I had seen at the 2011 event. What I saw develop Friday night into Saturday morning dwarfed that.

I can’t wait to see what that energy, dedication, and teamwork will build in the years ahead.

Cancer, you’re in big trouble.

(Note: As of yesterday at noon, the Relay for Life of Greater Fall River had raised over $274,000. While that is well short of our committee goal of $350,000–and my personal challenge of $400,000–it is within spitting distance of the ACS’s goal of $288,000 for our event, despite the heat and rain. Donations made between now and August 31 will count toward our Relay total. If you want to make a donation, we will not say “no.” ACS spent about $1 million on NET research last year–about one-third of the total funding for research into that form of cancer. I will continue to lobby them for increased spending. What Walking with Jane raises at Relay events does not go directly into NET/CS research but does give us a better platform to make the argument from.)

(Second note: I am taking next week off to sit on my deck and watch the hummingbirds fight over the feeders. This will be my first break since the summer before Jane got sick. I need a week to breathe and try to be a “normal” retired school teacher and widower. My next post will be July 1.)

I was out doing yard work the other afternoon when I saw something I have never seen before: two hummingbirds calmly sharing the same feeder.

Jane and I always wondered why the feeders we bought bothered with multiple perches and spigots. Normal ruby-throated hummingbird behavior is highly territorial. A bird finding a feeder occupied will try to chase the other bird off–and the other will fight viciously to maintain its prize. Just last night, two birds buzzed by my head so close I could her the buzz of their wings, completely oblivious to my existence in ways they never are when I try to get close to them while they are feeding at this stage of the year.

But there they were–the two of them–perched on the feeder in the southwest corner of the lawn and sharing dinner like old friends. I could not get close enough to make out whether they were an adult and juvenile or a male and female mated pair. Eventually, one flew off to the north. The other, when it left a good while later, headed south. I have not seen the behavior repeated since. And I have seen plenty of territorial squabbles in the interim.

Still, there was something hopeful in that experience. I spend a lot of time working with different cancer organizations. Too many of them see each other as competition and newcomers as some kind of threat to their position. I suppose a certain amount of that is inevitable. Humans like to compete at everything–even charity and altruism. And competition does not have to be a bad thing. The fact is, it often is anything but. I spent last night reading some things about a concept called gamification. The theory tries to take advantage of the fact humans like to play games and establish themselves through badges and other forms of recognition in order to get people to undertake specific kinds of actions that will either be good for them or the company using the methods or both.

Foursquare and Words with Friends are examples of this. I have to admit that I don’t share the fascination others have with these two games in particular. But as I read about them, I realized my interest in role-playing games shared many of the same elements–and the same elements existed in the pinball and electronic games of my youth.

Someone wrote to us yesterday asking if there were some way we could get the information on this website shared more widely. I happened to be online at the time with one of the people who works on the technological underpinnings of the site and passed the question on to him. His response, once he understood what the writer was getting at, was gamification.

I’m not sure how I feel about that. Dungeons & Dragons and similar games gave me a good understanding of the power of combined arms and small unit tactics–not to mention diplomacy and interpersonal and leadership skills I still use today. And we certainly need to spread the word about this particular cancer far more effectively than we are doing now.

But I don’t want us fighting over the feeders either. There is something to be said for a quiet, shared dinner with friends and family.

I wonder, sometimes, if what I am doing here does any good. I wonder if my time would be better spent doing something else.

Then I get a note from someone who says something along the lines of, “Thank you. I finally know what is wrong with me.” Or I see a post on Facebook that links to something here and asks people to share it because “awareness matters.” Or someone comes up to me at a conference and says, “thanks for what you are doing with the website. You don’t know how much it matters.” Or I get a note asking me if someone can use a particular post in a different venue.

Those things don’t happen often, as a general rule. But they seem to happen in clusters just about the time I most need them to happen–and that has been the case the last few days.

The Greater Fall River Relay for Life is next Friday. I’ll be on a local radio program (WSAR–1480) sometime after 8 a.m. Monday to promote that event. Other planning committee members will be on the same show later in the week at various times to tell their stories and help build us toward the weekend. We have over 1,250 participants signed up as team members–so many that we had to push delivery of the official T-shirts back to the night before the event. We still have room for a few more teams and as many people as we can cram onto the track at Somerset Berkley Regional High School.

And we are hoping that by the time all is said and done, we will have raised more than $350,000 for the American Cancer Society by the time we fold up the tents at 10:30 a.m. Saturday.

Yesterday I did the launch for my Jimmy Fund Marathon Walk Campaign. I signed up back in March but have done little to promote that effort as we focused all our energies on the Relay. In addition to my own walk, I am trying to recruit others to walk with our Caring for Carcinoid Foundation team. The money that group raises all goes into NET/CS research in Dana-Farber’s Program in Neuroendocrine and Carcinoid Tumors. Details about the different lengths people can do and how to sign up are available on the Marathon Walk site.

I also tried to launch the Three Million March this week. A couple of people have signed on to help with that. That, too, will have to get more work done after Relay ends, but if you can help, please do. We need people to know this disease exists, that it is deadly, and that it may be much more widespread than many think. This may yet prove to be something very different from a pink zebra–or even a plain zebra.

Even a link on your Facebook page can have a greater impact than you know.

Sometimes even the smallest things leave me feeling overwhelmed.

Monday, I went out to get a haircut. When I came up the stairs, I remembered how Jane would look at me after a haircut and croon “so cute” in my direction. The memory left me in tears and left me paralyzed for most of the rest of the day.

Yesterday, after I mowed the lawn, I took on pruning the azaleas in front to the house. That was one of Jane’s jobs. Last summer, I had not been able to face the task at all, so this year they were way out of shape. Three hours later…well, let’s just say the job is done but the plants are not the perfect globes she would have wanted. And there is more pruning to do all over the yard.

Dealing with people can also overwhelm me. It wasn’t that way before Jane got sick–but it very clearly is now. I can still run a meeting. I can still talk to individuals. But it requires a significant act of will to initiate anything involving direct, face-to-face contact other people. Even making phone calls is tough. Once I am there, I’m fine–but getting there…

Now given all of that, I have to wonder about my chances of success in this much larger endeavor called Walking with Jane, Inc. I have all these ideas but no clue how to make them real. Every one of those ideas requires help from lots of different people. I have trouble starting conversations with people I know–and suddenly I am talking about bringing all of this NET stuff up with strangers.

As I was pruning yesterday, I got to thinking, too, about the Three Million March. Who on Earth am I to think of such a thing? Why would anyone think for a single moment to attempt such a thing–let alone try to get other people to try to help?

But then I think about Jane at the end. I look into the faces of the people at the conference on NET I was at on Friday. I know that they are headed for that same ending Jane went through. Their spouses are headed for the same emptiness and helplessness that I experienced then and now. If someone had said something–if someone had done something…

People did. There were not enough of them. But they tried.

Regardless how overwhelmed I feel, I’ll keep trying. And I’ll keep trying to get you to try, too.

I owe that to Jane. We owe that to all those people out there who know they have this disease–and all the ones who don’t.

With the Relay for Life of Greater Fall River just 11 days away, we are closing in on the targets we set for that event. Our Walking with Jane Relay team is just under $1,600 of our $10,000 goal for that event, having nearly doubled already what we raised last year total. The event as a whole has more teams and participants than ever. The vast majority of the money the group raises will come in over the next two weeks, but we are ahead of where we were last year to this point.

June 22-23m we will see how much fruit the efforts of the teams and the planning committee will bear for the benefit of the American Cancer Society. My hair–I have told everyone I’ll go bald for a year if we top $500,000–seems safe for this year barring some huge donation from the outside world. But the possibility of me ending up in a large body of water in my tux–the deal if we go over $400,000–still seems realistically on the table. We’ll see what happens with both those bets the morning of June 23.

But as we come down the home stretch on that event, the serious work begins on four projects that will be of direct benefit to the fight against neuroendocrine and carcinoid tumors. After June 30, my full attention will return to funding the Walking with Jane Dybowski Fund for Neuroendocrine Cancer at Dana-Farber, September 9’s Jimmy Fund Marathon Walk, and the Cure Crawl. All those efforts will be part of the broader $3 Million March I wrote about a couple of weeks ago–our effort to double the funds raised for NET/CS research over the next 12 months.

We have a lot of ideas on the table for those efforts: a mini-golf tournament, a par 3 golf tournament, a motorcycle rally, a bike-a-thon, the Cure Crawl, a direct mail campaign, an email campaign, a door-to-door campaign, a craft fair, a series of public service announcements, an expansion of the Walking with Jane online store and improved marketing for it, a move to create teams to fundraise around marathons and other races, starting with the Marine Corps Marathon in October.

But right now, we have limited resources and we cannot do everything. So we have to set priorities. And the first priority needs to be to recruit more volunteers than we have now–a lot more. The truth is the small handful of things we are currently doing has the people we have now stretched out pretty close to their limits. The website alone keeps me occupied for two hours or more every day.

But this cancer is a nasty bit of business. For years, its victims have suffered from an anything but benign neglect. We are finally beginning to be able to shine some light into this particular dark corner. In order to keep that light shining, though, we are going to need all the help we can get.

Eventually, that is going to mean money. But before

we can worry about money, we need to find volunteers willing to organize and run events–large and small–that will not only raise money, but raise awareness as well.

We need you.

If you think you can help, drop us a line at walkingwithjane@gmail.com.

At eighteen months, a child is a toddler. The child walks, after a fashion, but sometimes–and for no apparent reason–falls on its butt. Sometimes, the surprise induces laughter, sometimes tears. The child can speak, also after a fashion. It communicates in rudimentary words about the most basic of wants and needs–and tears and howls are still a major –though decreasing–part of the package.

I am a toddler in the world of grief. Eighteen months ago, when Jane died, the numbness and the pain were omnipresent. I remember bits and pieces of those days–arranging the pictures for the collages for the wake, carrying the coffin, leaving the church, speaking at the cemetery, returning to work, speaking at the Greater Fall River Relay–but most of the first year consists of long stretches of emptiness punctuated by short sharp memories of overwhelming sorrow and grief.

I remember vividly the day of Jane’s death. Every moment of it is etched in my mind. But I still lack the ability to describe the despair of those moments–nor the act of will it took to do all that needed to be done over those hours. I was an infant again. I had no words with which to articulate the pain.

My screams in those first months after her death were silent and private. Our students still needed the fatherly half of the couple we were. I do not comprehend what a surviving parent goes through–how hard they are driven to remain strong for the children. My own task was hard enough. At night, at least, I could retreat into the grief and the pain and the tears a parent living with young children is denied. If you want to see real strength, look at them. My strength was largely exhausted in walking Jane to the end of her life.

I am learning to walk again. I am learning to talk again. There are days–yesterday was one–that I feel my humanity returning–that I feel emotions other than rage and grief, that I think about something other than wreaking vengeance on the foul disease that separated my wife and me. But then I wake up from some dream or see, without realizing it, some trigger during a walk or a drive and I am that toddler again whose legs are suddenly not where they were an instant before. The awfulness of grief rolls in and pins me to the ground and all I can do is howl in frustration.

But like the toddler, I get up again. Walking, for all its frustrations, is better than crawling.

And some day, I will not fall down.

I spent most of the day outside working on the lawn and the vegetable garden. The nearly constant rain of the last two weeks combined with my schedule have put me miles behind on the yard work. I am amazed how fast the grass and weeds can get out of control without constant attention.

All morning it looked like it might rain, but I felt I had no choice. Gradually, the sky cleared and the humidity dropped. I re-mulched the places in the garden that had gotten a bit thin with some of the new mowed grass. Normally, I leave the clippings on the lawn, but the grass was so high doing that would have smothered it. It takes longer when I have to bag the clippings, but they make good mulch–and what I don’t use feeds the compost pile.

I spent the afternoon weeding the back beds that have not been planted yet. I am still debating what goes in there. Beans and fall peas for certain, and maybe I will try some fall spinach again–though that rarely works out for me.

I finished planting two beds with squash and melons. My squash plants always do well, but the melons rarely produce anything worth eating. At this point in the year, I am always optimistic.

I made my weekly trip to the cemetery about 4 p.m. Because it was so late, I had to go in through the side gate and walk through several sections to get to Jane’s grave. I put three stones at the base of the grave–one for her, one for me, and one for us. I stood there talking to her, though I know she is long gone from that place. Then someone came by and told me she had just seen a bunch of baby foxes not far from where I was standing and that their mother had to be around somewhere. I took that as a sign it was time to go.

When I got home, I decided to take a walk around the lawn. I did that all the time before Jane got sick. I still do it now, though not as often. Sometimes looking at the beds we built together is just too hard. But it seemed okay today. And just as I started, I almost tripped over a baby bunny at the edge of the lawn on the north side where my neighbor and I leave the grass long to provide cover for the birds and rabbits and the like.

The bunny largely ignored me. I got within six feet of it and all he did was twist his head a bit to keep an eye on me. The birds in the back yard largely ignored me as well.

Yesterday, my father told me I was becoming obsessed with this cancer thing. Earlier in the day a complete stranger at the conference I was at asked me if I was taking time for me periodically. A friend had said something similar a couple of weeks ago.

I had one or two things I had to do today: I had a call this morning about Relay and I had two quick posts I had to make about that. And I wanted to write this piece tonight.

But most of the day, I put NET and Relay in a box and put it on the shelf. The world did not end. And for a change, I feel almost human.

And that’s a good thing.

“If” is the biggest little word in the world sometimes.

We all have those days when we wonder, “What if…” I had one today.

I spent the day at a patient conference on NET sponsored by the New England Carcinoid Connection. I listened to a number of doctors from Dana-Farber talk about everything from the latest research to surgical techniques.

Dr. Matt Kulke unveiled publicly two of the things we had talked about during my visit to Dana-Farber last month. They have successfully grown a number of NET Cancer cell lines in vitro and transplanted some of those lines into an animal model where they have grown successfully.

I got to raise my question about whether or not non-carcinoid  tumors growing in close proximity to NETs tend to be more aggressive than those that are not–a question I raised here last week–with Dr. Thomas Clancy, who told me it was a good question, but that no one knew the answer to it.

I made contact with a number of the people from the New England Carcinoid Connection–the group running the conference and had some good conversations with a number of patients an caregivers. I even encountered an old friend I had not seen in more than 30 years.

It was, in so many ways, a good day.

But in one of the morning sessions the dreaded “What if…” demon raised its scruffy head and derailed my mind for more than a few minutes.

Dr. Matthew Schenker was presenting on liver embolization techniques. These are methods of shutting off the blood supply to tumors in the liver without doing damage to the rest of the liver. The method can also be used to place chemotherapy drugs and radiation directly inside tumors. All three can obliterate a tumor in the liver pretty cleanly. Had Jane fully recovered from the heart surgery and not been ambushed by the series of carcinoid crises that ended her life, liver embolization was to have been the next step.

Near the end of his talk, he presented the case of a 54-year-old woman who had tumors in her liver even bigger than Jane’s were. The valves in her heart had been damaged somewhat, but not yet to the extent that Jane’s were. She was essentially where Jane was one year before her diagnosis.

The results of that simplest of embolizations were dramatic. The diarrhea, the flushing, and night-sweats vanished. The slight swelling she had begun to experience in her legs also disappeared.

Had we figured out what was going on with Jane just one year earlier, this could have been her story. We could have retired together. We could be fighting this battle together. Most importantly, we could still be here together.

But that didn’t happen. The horse with zebra stripes was still hiding in the forest kicking her to death for another year. And no one knew.

Tonight, I came home again to this empty house–as determined as ever to stop this disease from doing to others what it did to my Jane.

But the house is still too empty and too quiet.