This weekend marks the real start of our Jimmy Fund Marathon Walk campaign.

Either Saturday or Sunday the Fall River Herald News will run a story in both their print and online editions about the Walk. The online story will be accompanied by a video of me talking about the Walk and asking people to join the team or make contributions.

Next week, Phil Devitt, who edits the Fall River Spirit , served as our publicity chair for Relay, and supervised our NET Awareness Day press package, and I will sit down to plan the full public relations plan for the rest of the Walk campaign and the Press Kit for this year’s Awareness Day. He will also do a story on the Walking with Jane Marathon Walk plans for the group of papers he works with.

Meanwhile, negotiations continue that may lead to a joint Caring For Carcinoid/Walking with Jane Marathon Walk team that would be good for both organizations. All we have to do now is convince Dana-Farber that it is a good idea. We would benefit from CFCF’s broader reach while they would benefit from our expertise in public relations and motivation techniques. Together we think the whole would be greater than the parts.

But I have to be honest: I am frustrated. Last year at this point I had personally already raised over $1250 for the Marathon Walk. Within minutes of posting the Walk online last year we had over $500 in pledges. This year we are just over $500 online with another $90 in checks set to be mailed to Dana-Farber once we have the documents in hand to do so. That leaves us down 50 percent from last year at this same point.

Views of the website have also been down significantly for the last two months–and have been trending downward since Christmas. Part of that may be because of my slowness in figuring out SEO–a thing I finally cracked the end of last week. And view numbers have improved significantly since I finished that operation on Monday morning. But some pieces–and I had two this week that did significantly better–generate far more reader interest than others. It will be a few weeks yet before I know whether this week has reversed the trend or not. My goal for the site in terms of views for the first 12 months still seems feasible: 12,000, roughly the number of new NET cases that will have been diagnosed over that period.

I remain optimistic. There is good science being done on NET every day. Every day there is a new paper or new finding to read about. Over the next few days you will begin to see more links appearing in the Resources section. With Relay over I should have more time to focus on keeping those sections more up to date. There are several new posts there today–though the majority are for the medical community rather than the rest of us. But one story in particular tugged at my heart. It is about a married couple. She was diagnosed with NET three years ago. He was just diagnosed recently.

One says now they can fade away together. It made me cry.

Nineteen months.

I have been at sixes and sevens all day today. I have wandered the house, wandered the yard, wandered about my mind. I have stared at the computer screen for hours. I have haunted the Internet, checked my email a thousand times. I have waited for the phone to ring–and dreaded hearing the phone ring.

Nineteen months.

Babies have been born and learned to walk and talk. Couples have fallen in and out of love. Students have graduated and moved on–twice. Books have been written and published and sold and remaindered. Elections have come, gone and are coming again. Businesses have opened and closed and filed for bankruptcy. Others have opened and grown and flourished.

Nineteen months.

I have planted and harvested and planted again. I have retired from one work and begun another. I have cried and laughed and mourned and cried and laughed and mourned. I have grown and grown old and grown young and grown old again. My hair has gone white and my step has grown weak.

Nineteen months.

I have

planned and cleaned and planned and painted and planned and built and planned and created. And nothing is done. And a dozen different things are started. But nothing is finished.

Nineteen months.

I have never been more productive. I have never been more creative. I have never been more. And I have never felt less productive, less creative or anything less.

Nineteen months.

We hiked through fields and over mountains. Now I walk the empty streets to her headstone.

Nineteen months.

What does it mean to love someone too much? What does it mean when they die? What does it mean to climb the too familiar stair of a too familiar house? What is the sound of empty?

Nineteen months.

People tell me I am strong. People tell me I am brave. People tell me she would be proud. People tell me I am making a difference.

Nineteen months.

It is forever. It is the blink of an eye–less than the blink of an eye. But it is really forever.

Nineteen months.

Sleep eludes me. Joy eludes me. Success eludes me. Every victory reminds me of the loss. Every failure scars my soul. No scar matches her death.

Nineteen months.

“I always saw us growing old together. I saw us retired, traveling, reading, writing, gardening. I saw the time together. I saw our slow decline to death, together–or not very far apart.”

Nineteen months.

“I forgive you.”

Nineteen months.

I forgive you.

Keeping this website going is a lot like housekeeping: there is always something else that needs to be cleaned up.

About a week ago, I decided the way the contributions page (formerly Ways to Help) was set up was not making life easy enough for either those who wanted to become involved or those who just wanted to make a donation. It was too many words to get to something that needed to be simple.

So last night, I sat down and redesigned that piece of the experience. You can check out the results if you want. I won’t go anywhere while you do.

And while I was under the hood anyway, I decided it was time I figured out how Search Engine Optimization worked. So I wrestled with what the books say to do, then wrestled with the various parameters on the site–discovering in the process that the way I write headlines–while fine for the viewing public–is not so hot for search engines trying to determine whether people will want your site on the first page or not. I also discovered that while everyone keeps telling me to keep these posts relatively short–400-500 words–anything under 300 is too short as far as Google, Yahoo, Ask, and Bing are concerned. Everything on the site now registers as at least okay where SEO is concerned.

I’d gotten tired of feeling I was writing in a vacuum, so I asked our designer  to set up a way for people to comment easily on these posts. We debated not screening them before they were posted, but finally settled on moderating them so no spam would slip through. So far, we have had 25 comments made, none of them really germane to what we are doing here, and more than half of them spam. Instead of getting useful feedback, I get ads from people offering everything from fast ways to build hits to sexual enhancements, most appearing to have been written by people whose familiarity with English is fleeting at best. I swear some of it has to be computer-generated gibberish.

But those posts have to be cleared out every day, both here and on our Gmail account, or they will become a real chore to keep up with. This is our second attempt to make this more interactive. Our forum very quickly became so inundated with junk, we took it off-line and eventually shot it. But I really do want to hear what people have to say, so we will keep trying to come up with a way for that to happen.

I’ve also been rethinking how to use our Facebook page. It got shifted to the back burner last fall when we started developing this site. But as this matures into something that is more maintenance and less major lifting, we have to get back to developing our social media side. That means not only revisiting what we are doing on Facebook, but also biting the bullet on Twitter. At least Tumblr seems not to have really taken off.

What do you see as our next online priority?

One does not build a body to take on the Jimmy Fund Marathon Walk overnight–at least not at 60. I thought I was in good enough shape last year–and I was for the first 15 miles. With five miles left to go, I was pushing forward on pure willpower. And every step of the last mile was tough.

But I got to the end under my own power.

This year, I am determined to be in better shape than I was a year ago. I want to get to the end and feel like I could do it all again tomorrow.

So three weeks ago, I started the training regimen the Jimmy Fund sent me. Thursday night, I felt like I was starting to hit my stride. There was speed in my step and a little bit of a bounce as well that has not been there since before Jane got sick.

This morning’s workout called for an eight mile walk to be finished in two hours and 15 minutes–a brisk pace. But it was a nice morning and I felt pretty strong. The sun had gone in and, while it was humid, the temperature was not too bad. So I went for ten. I was done in 2:45.

My feet are a little achy, but my legs still feel pretty good. I could likely do 15 or 20 at this point, but there would be a price to pay for that tomorrow. And since tomorrow calls for another five miles in 1:45, and I’d like to go six in under two hours, I’ll take it easy tonight.

Doing more than people expected–doing more than was asked–was something that was a hallmark of the way Jane and I lived our lives. We were both always trying to stretch the envelope. We followed the quote from Arthur C. Clarke that you do not know what is impossible until you have pressed beyond it into the realm of the impossible. Jane attacked her cancer the same way when she was alive. She attacked recovery from the heart surgery the same way. And my approach to the war on NET cancer I decided I would carry on after her death is the same.

No one could ever tell either one of us that there was something we could not do. It would simply goad us into trying to prove them wrong. Neither of us were willing to put limits on what could be accomplished by hard work, perseverance and intelligence.

But we were also smart enough to know when we needed to ask for help.

If the Jimmy Fund Walk is going to be successful for Walking with Jane, then I am going to need help. As I walked this morning, I mulled over whether or not we could go it alone this year. By that I mean I wondered if we could put together a team rather than walking under someone else’s banner. To do that, we would need to be able raise $10,000 between now and September 9. That way the money could go to the Walking with Jane Dybowski Fund rather than into the general fund at Dana-Farber.

If you are interested, let’s talk. I’ll need to make a decision this week. Drop me a line or make a comment below.

While there is no cure for NET after its early stages, there are a number of treatments available to slow the disease down and help patients deal with the symptoms. And the longer we can delay the advance of the disease, the greater the hope that a patient will be here when we find a cure.

Before I begin, though, I have to warn you I am not a doctor. This information needs to lead to a discussion with your primary care doctor and/or your oncologist about what your particular treatment options are. I provide this information purely to point out that an initial diagnosis of NET is not the end of the world–or even your life in it.

The single most effective treatment relies on early diagnosis. But, as I have said many times, early diagnosis is currently the exception. Most tumors that are discovered early are discovered by accident. But if you should be fortunate enough to get a diagnosis before the tumor has moved out of its initial site, surgery can cure the disease. The surgery is not minor, but it is not open-heart surgery, either.

But even at later stages, surgery can slow the progression of the disease significantly. Those surgeries can either take out the primary tumor or, if the disease has progressed to the liver, the tumors can be de-bulked using liver surgery. If the tumors are limited to a single lobe of the liver, this can be a particularly effective technique. That lobe of the liver is removed and, because of the peculiar property of the liver, the liver section removed will regrow. Liver surgery, however, is a much more complicated operation than a relatively simple appendectomy, for example.

Either of these surgical approaches can buy you significant symptom-free time and will likely improve both the length and the quality of your life.

There are a number of drugs that have also been shown to alleviate symptoms and slow the course of the disease. Octreotide, which blocks receptors in the tumors, and its long-acting brother, Somastatin, are the old standbys for this. Somastatin is a monthly injection generally given on an out-patient basis. I recently met a woman who did not tolerate it well but was using it through a pump like that used to deliver insulin to diabetics. She swore by the concept and said she had been using it for years. A number of other drugs have been shown to be safe and effective for pancreatic forms of NET and are currently in trials for other forms of the disease.

Another technique that has shown great results with liver metastases is liver embolization. There are three different methods of this, but basically all block the flow of blood to the tumors and/or deliver doses of drugs or radiation to the site of the tumors. This technique can lead to 2-3 years of relief from the symptoms of the disease–and can be repeated when and if symptoms return.

While none of the above will cure NET, each can have a significant impact on both quality and length of life. Talk to your doctor about how they may apply to your particular situation.

First, there was the idea: an organization to help find the answers Jane and I could not find about neuroendocrine cancer and carcinoid syndrome. It was not that the answers were hidden–there just were not any that were very helpful to us. NET–unless discovered very early in its genesis–was–and is–a cancer without a cure.

When I decided to take part in the Relay for Life last year, I asked some of our closest friends to help put together a team. We did well, but the money we raised was not ear-marked for NET research. It went into the common American Cancer Society pool. But we did well enough that I was asked to chair the Greater Fall River event for 2012. That position allowed me to talk with the New England President and, eventually, the national chief medical officer. Both were supportive and made it clear ACS was already doing some funding of NET research.

But as I talked with other organizations, it became increasingly clear that what was being raised and spent on NET was a pittance compared to almost any other form of cancer. Money pays for research–and money was in short supply. I knew I needed to focus my energies increasingly on that problem. In September, I tackled the Jimmy Fund Marathon Walk with the Caring for Carcinoid team because all the money they raised would go to NET research at Dana-Farber.

But that was a starting point, not an ending point.

From the start, I wanted to create a foundation to support research and education on NET and CS that would keep Jane’s memory alive. She had said from the day she was diagnosed that while no one had beaten this disease before, she was going to be the one to do it. When she died, I decided her death was going to be the beginning of the end for this disease if I had anything to do with it. The people at the Dana-Farber Cancer Institute stepped up before I could move. The day of her wake, I got a call from someone there. They planned to establish a Program in Neuroendocrine and Carcinoid Tumors.

In February of this year, we established the Walking with Jane Dybowski Fund for Neuroendocrine Cancer at Dana-Farber. Within a month, Dana-Farber’s Program had launched its own website. In May, Walking with Jane, Inc. received its charter as a 501(C) (3) non-profit.

The end of last week, we received our tax ID number from the IRS.

Today, we have a bank account.

In the 18 months and 25 days since Jane’s death, we have gone from an idea, to a group, to a legal corporation. We’ve raised and donated over $50,000 to Dana-Farber, to ACS, and to the Caring for Carcinoid Foundation. We have designed and manufactured shirts and bracelets and water bottles and buttons. We’ve created a website and a Facebook page and a press kit a pamphlet on NET.

Perhaps more importantly, we have begun to inspire others to join us on this quest.

And we’re just getting started.

My sense of timing is lousy. It always seems I come up with an idea a day after it would have been really good to have it. Today is that kind of day.

I know many of you won’t read this until after the neighborhood barbecue. But I will post it here now anyway in the hope it will inspire some of you at the last moment.

Walking with Jane needs your help.

We want three million people to learn about neuroendocrine cancer and carcinoid syndrome in the next 12 months who did not know about it before.

Why three million? Because that is

the potential high-end number of how many people out there have NET and do not know it.

So today, if you know enough about NET to be comfortable talking about it, tell the people at your cookout or the fireworks display–or wherever you happen to be–about NET. Encourage them to visit walkingwithjane.org.

And if you are not comfortable with your knowledge of the disease, please encourage those folks to visit walkingwithjane.org.

One of our biggest problems with this disease is too few people know it exists.

Let’s try to change that–starting today.

In 1979, long before I met her, my wife weighed 130 pounds. A year later, she was down to 100 pounds.

If she ate, her belly instantly developed huge and painful gas–so much that it made her look six months pregnant. Her mother was convinced her daughter was anorexic.

She went to several doctors. Eventually, finding nothing physically wrong, they told her she had irritable bowel syndrome and suggested she see a psychiatrist. They told her they thought it was all in her head. She found it hard to trust doctors after that.

She learned to be careful about what and when she ate. Sometimes it helped. Sometimes it didn’t. But it was what her life was now–and she accepted it.

When I met her in 1985, she weighed 105 pounds. She played tennis two hours a day every day in the summer. A 25 mile bike ride in the afternoon did not tax her. She was the most physically well-conditioned person I knew. We discovered we walked at the same pace. But the painful bloating and gas were still frequent–though generally secret–visitors. Diarrhea was an occasional issue as well.

I only learned of this after I took her out to get something to eat after a movie one night. She seemed uncomfortable with the idea but we were not yet at the stage where long term health issues were on the table for discussion. That changed the next day when I called her. She told me what the price of that late meal had been in terms of physical pain. After that, when we went out to eat, we went early.

Gradually, I learned she functioned on 5-6 hours sleep a night, that she suffered regular bouts of insomnia, that sometimes the bloating showed up for no other reason than it did. Some nights I would come home and find her lying on the floor on her belly: it was the only position that was comfortable. I tried to get her to go see a doctor regularly. “Why bother?” she would ask. “They will just tell me I’m crazy again.”

Menopause came early for her. But the symptoms never abated. A decade later, the flushing was still there, and the soaking night sweats, and everything else that goes with it. I massaged her feet, gave her back rubs, continued to suggest doctor visits. I would wake up at 3:30 in the morning and find her listening to the radio through the ear buds. She would tell me she woke up and could not stop thinking about a lesson she was doing the next day.

I don’t know when the diarrhea started to be a regular thing. She was very private about her bathroom habits. I do know that about three years before she was diagnosed that she never left the house without Imodium. By mid-winter of 2009, the diarrhea started nearly every morning. By that point, she was seeing a doctor, but they were both convinced it was stress-related. The symptoms eased on vacations–eased but, she later told me, never entirely went away.

Then the room started to go away when she was teaching. She said she could hear her voice, see the chalk moving across the board, but that suddenly everything seemed a million miles away. Even her students noticed these episodes. But she put off seeing the doctor: she was teaching AP Biology and the test date was fixed.

Her feet began to swell. Then her legs. The water pills they gave her had little effect.

Then, finally, they found the tumors in her liver. The biopsy explained everything she had gone through for 30 years. And worse was coming.

She developed a blood clot in her shoulder. They gave her a blood thinner she had to inject in her belly every day. Then she went on Octreotide. She had to inject that in her belly three times a day–every day. I bought her alcohol swabs with a painkiller in them. She yelled at me when I brought them home, but then thanked me after the next injection.

Her legs became more and more of an issue. She could not walk very far or very fast. The valves in her heart were failing. The diarrhea was worsening as well. We always had to know where the bathrooms were if we went out. She worried about having “accidents” in the car. Eventually she confined herself to the one floor of our house. The day before we went into the hospital, she could not get off the toilet by herself.

In the hospital, she gradually lost all control of her bowels and her bladder. She felt like an infant in a completely aware adult body.

Yesterday, I tried to explain logically why we should not treat this as a rare disease.

Today…this is what it is like to live with this “indolent” disease for 30 years. In 800 words, I have not even scratched the surface–barely given a taste.

There are 120,000 people in the US right now who have been diagnosed with this disease. There are thousands, perhaps millions, more who have it and do not know it–who are going through this the same way Jane did for 30 years.

We need more of everything: more doctors, more researchers, more teachers, more medicines, more research, more awareness, more money, more hope.

We need to stop thinking and acting like this disease is harmless because it is rare and slow-growing. We need to act with a sense of urgency.

We need to find a way to kill this thing.

You can help.

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.