I sat down at the computer last night with the best of intentions. But what had started out earlier in the day as a two hour drive from Western Mass. through country I had not seen in decades at some point turned into a four hour nightmare involving a blown tire, a rim that had fused to the brake drum, an annoying offshore conversation with my auto club (which appears to have sent all its customer service, including emergency road side assistance, to people on the far side of the world whose acquaintance with the American Highway System consists of what they can see on Google Maps), visits from two very helpful state troopers and an official breakdown specialist, two helpful passersby, and, finally, 45 minutes earlier than promised, the guy with the tow truck.

I think we forget sometimes the number of truly good and nice people in the world today amid all the corporate and political craziness that leads us to other conclusions.

By this point you are wondering what all this has to do with neuroendocrine cancer and carcinoid syndrome. As I sit here on an overly warm and muggy New England morning musing about the events of yesterday I am also reminded of the incredible kindnesses Jane and I encountered during her last months: from the nurse who came in to sit with Jane right after her doctor told her he thought she probably had cancer, to the people at the inn who arranged a special room for us overlooking the lake for our last night of our last vacation. There were doctors and nurses every step of the way who quickly moved from caregivers with imposing titles and resumes to people we could talk to. Eventually, they became friends we could count on to tell us the truth about what was going on.

I think about the people at work who nightly took the calls I made to the principal–or anyone else–and sent the information out over the network we had established for snow days so that everyone would know how things stood. I think about the friends who gave up their Thanksgiving so Jane’s father and sister could be with her in her hospital room for one last family Thanksgiving. I remember the families of the other long-term patients in the ICU and the tight bonds we formed to support each other in our times of deep trouble. I remember the friends who came to visit, making the long drive through the traffic to and in Boston from our little corner of the world.

I remember Helen driving me from Newton to Brigham & Women’s and inviting me to sit and talk in her living room, just to get me away from that hospital for a few more minutes. I remember the nurses who made sure I got something to eat every day, that I got into the shower every day, and that I tried to sleep some every night.

And I remember the friends who came to be with me on that last day when my whole world was shattering into Humpty Dumpty-style pieces. I remember Jen Chan coming through the door just before noon that day on her lunch break to sit with us, not as a doctor but as a dear friend–and saying on her way out to see her afternoon patients that her body would be with them, but that her mind would be with us all afternoon. I remember Javid Moslehi making that same pilgrimage later in the day–again, as friend not as doctor. I remember the chaplain I had met in the elevator dropping by to visit, even though it was not his floor. I remember John and Gail sitting there with us through the hours. I remember Scott staying with me far into the night to be with me at the end and to help make the calls that had to be made–and then driving me home and back again the next day so I could get my car out of another friend’s driveway.

And I remember the words Scott relayed to me from the young woman in the Shapiro Family Center who had talked with me every night after dinner after he told her the news that Jane had passed away: “Thank you. I am going to go cry now.”

There were constant kindnesses from both our oldest and dearest friends and from people we hardly knew.

And those kindnesses have continued since Jane’s death–from the hundreds who attended Jane’s wake  and funeral, some literally flying across the country to be there, to the hundreds who have made donations of time and money and effort to the work of helping try to find an answer to this cancer, to the people who write me and call me and make sure I get out and go for a hike or out to a concert or a roller derby or a play or in some way take a break.

There are times I feel like Prometheus, chained to his rock with an eagle gnawing on his liver. There are times I feel like Atlas with the weight of the world on his shoulders. There are times I feel like Job sitting in the ashes of his burned out farm.

And then a random act of kindness happens–sometimes not even directed at me–and I forget the pain, I forget the weight, and I understand Job’s answer.

To all of you, both known and unknown, my thanks.

Just now three geese flew overhead so close I could hear their feathers keening above the sound of their honking. The number three has always held deep meaning for me, though not in the traditional Christian sense.

But I will take that as a positive omen: that together we will find the cure for this cancer, and that together we will all make this a better world through our individual random acts of kindness.

Go do something nice for someone today. You can never be certain how that will help them lift the burden they may be carrying.

I spent  the first half of this weekend at the American Cancer Society New England Summit event in Springfield, MA. I came away more convinced than ever about how widespread NEC may turn out to be as, again, I encountered more people than I would expect who need to be screened ASAP for the disease given the symptoms they described to me. As I have said many times before, I am not a doctor. My advice to those exhibiting symptoms is always the same: go get tested.

I will repeat here what I say on the “About NEC” page: If you have Irritable Bowel Syndrome, you need to think about getting tested for the disease. If, in addition to IBS, you suffer from two or more of the other symptoms on that list, you should not just think about being tested, you should insist on being tested. This is not a disease to trifle with.

And I also came away more convinced than ever that we need to be raising and spending far more on NEC and CS than we are.

On that front, I received an email today from Ellen Eisner at CFCF. Our fundraising total for the Jimmy Fund Marathon Walk, as a team, is just short of $34,000. We have until November 1 to continue raising and turning in money for that event. The money will go to finance a study  to identify the genes that cause the tumors to become carcinoid, with an eye toward developing new types of targeted therapies for this type of cancer.

If you have been following what is going on on the Resources page, you know that there are a number of things with the potential to make a significant difference in the lives of those who suffer with this disease. Those potential treatments will also make a significant difference in the lives of those patients’ families. But they will remain mere potential if the money does not exist to move them from Phase I and II trials to Phase III trials and eventual FDA approval.

One of the themes of the ACS Summit this weekend was “Save more lives faster.” They talked consistently about the need to come up with the money for more research–both through fundraising and through lobbying the federal government to increase the funding for the National Cancer Institute.

I spent part of this weekend lobbying myself. But I wasn’t in Washington. Instead I buttonholed every ACS bigwig  I could find to argue for meaningful funding levels for NEC/CS research. The head of the New England Division is supposed to get back to me this week so we can have a detailed conversation about what I told him was the ACS failure to fund NEC research at a meaningful level.

The truth is that even if CFCF raised $40,000 from last weekend’s walk, it would not be enough to fund the research we need at the level and quantity we need it if we are going to give those afflicted with this disease a consistent fighting chance. CFCF has raised a million dollars a year for the last several years. But that is a drop in the ocean compared with the billion dollars a year it has cost us to begin to put breast cancer on the run.

And do not mistake me: breast cancer research matters to me. Both my sister and my sister-in-law are survivors because of the money we have poured into breast cancer.  I have former students whose mothers will be there for graduations and weddings and grandchildren because of the money we have spent there. I have former students who will see their children reach those same milestones because of what we have spent there. I do not begrudge one nickel of what we have spent trying to unravel that.

But the effort it has taken to make all those folks long-term survivors needs to be matched if we are going to make those with other cancers–and NEC in particular–equally long-term  survivors.

So I will lobby everyone I can think of  if that is what it takes.

I watched what this disease did to my wife. Daily I experience what it has done to me through her absence. I do not want anyone to have to experience what Jane experienced those last months of her life: the loss of mobility, the loss of physical control over every part of her body, the loss of self esteem and pride, the loss of her mind. I do not want anyone to go through what I went through in those days as I watched those things happen–gradually knowing there was nothing anyone could do to stop them from happening. Nor do I want them to go through this aching loneliness and emptiness I feel now.

But somewhere in America–right now–someone else is going through what Jane went through. Their spouse is going through what I went through. There will be no more birthdays, no more anniversaries, no more nights on the couch together.

And that story will be repeated over and over again until we have raised the money and done the research and gotten through the Phase I and Phase II and Phase III trials and the FDA  approval process.

And that knowledge hurts.

Lost in all the excitement about the Jimmy Fund Walk was last Saturday’s Walking with Jane Relay for Life Fundraiser at Scott and Wendy’s. Their daughter had suggested we do an event in conjunction with the massive yard sale that happens in their neighborhood every year.

So I loaded up the car and hauled everything out to the country for the two days. We raised just short of $250 over Saturday and Sunday. That will be our initial deposit  for this year’s Relay. Nice job M.

But more important than the money was the number of people we were able to educate a little bit about neuroendocrine cancer. A number of folks came by who said they had been diagnosed with IBS and still did not know what the real problem was. Many planned to have their doctor consider the possibility their IBS is actually NEC related.

And then there was the woman who was almost too shy to ask the question. She stood at the end of the driveway squinting to see the sign. “I’ve got IBS,” she mouthed.

So I walked down the driveway to talk to her. She told me she had been fighting IBS for years. She had tried making changes in her diet, with no effect. She had trouble sleeping. She had hot flashes despite being a bit young for menopause.

I told her she needed to talk to her doctor, but she worried about whether the testing would be covered under MassHealth. I did not–and do not–know the answer to this. I hope she will be–and that she gets to the doctor and presses for testing in any event. She had all the symptoms Jane complained of for years. I may not be a doctor, but this is one devil I know when I see it.

But the encounter got me thinking. In Massachusetts we all have health care insurance–at least on paper. But how good are some of those policies? The federal government is headed in that direction–but again, how good will those policies be?

People worry about government rationing health care–about deciding who lives and who dies if we have a real national health program. But we ration health care today. Even with our platinum level health insurance, we had to call to ask permission for all of Jane’s stuff in advance. What would we have done if they had said no?

If we had been under an HMO the process would have been even more difficult. And who makes those decisions–not doctors or nurses most of the time. (And I mean no slight to nurses there. The fact is I would rather have nurses making those decisions than doctors. Our doctors were great, but I have heard too many stories about doctors without hearts–and have met one or two I had the luxury of firing. I have not met a nurse yet that lacked a heart.) We have health care rationing–it is based on profit and loss statements of insurance companies–and the decisions are often not made by medical people but by MBAs and BBAs.

So I worry about that young woman I met on Saturday afternoon. I wonder if her concern over cost or visit limits will cause her not to get checked for this thing–will cause her to think twice about even trying.

This is a disease no one should have to think twice about getting treatment for. It is not a disease you can afford to let fester. The only real chance of a cure is to find it early and remove it early.

We want to change that. But we are not there now. Please, if you have not read the About NEC page–have not looked at the symptoms–make that your next stop. And if any of it looks or sounds familiar, make that doctor’s appointment today. Get checked.

All the money in the world won’t matter if you are dead. And all the money in the world will not fill the empty space in the lives of those who love you when you are gone.

Friday was the 2011 Focus on Neuroendocrine Tumors Conference in Philadelphia.

The link below will take you to a page that will link you to a video of the entire conference and all the presentations. In addition you can access the PowerPoints for each of the presentations at the conference. When you get to the site just click on the button to view the conference or on one of the buttons below that for each pdf.

http://www.penncancer.org/patients/media-hub/focus-on-conferences/2011-focus-on-neuroendocrine-tumors-conference/

The last presentation in the list is about how to become a barking zebra. It is by a patient and is a good guide to how to become the kind of actively engaged patient you have to be to fight a disease many doctors have not even heard of.

The slides in some of the other presentations provide an outline of the material but are harder to follow without the actual presentation.

I will also post this link in the resources section of walkingwithjane.org in the next day or two.

The conference was sponsored by the Caring for Carcinoid Foundation and Penn Medicine.

The Marathon Walk yesterday was both physically and emotionally taxing. Physically for the obvious reason that 26.2 miles is a considerable distance even for the young–and the way I feel today I am clearly not yet young again or even headed in that direction.

Strangely, beyond feeling really tired and a touch stiff, the only real pain I am feeling is in my hips–and they really only bother me when I try to walk. I have never, in all the years I have been hiking and walking and running, had pain in my hips afterwards. Curious.

But I could feel Jane with me on every step and, no matter how tough the physical pain was (they call it Heartbreak Hill for a reason), her voice kept me moving forward.

For the first 60 percent of the walk, I was largely alone. I thought the Caring for Carcinoid group had already left when I got there, so I left at top speed to try to catch them. A couple miles down the road I caught up with Rosie who was carrying their balloon. She told me she had left early and they were still at the start waiting for me. Eventually she got a message to them and we met up about mile 16 for lunch.

But that first 16 miles I had plenty of time to think and to remember the walks Jane and I had taken, the mountains we had climbed, and those final walks at Dana-Faber and Brigham & Women’s–ending with the day I had to push her wheelchair across the street to the Shapiro Building the night before her heart surgery.

And then there was that long figurative walk that lasted nearly a month as I walked with her to her death.  I remembered our Thanksgiving dinner of cream of chicken soup for her and pumpkin soup for me as we sat together in her hospital room. I remembered how glad I was that she had come out of that first coma so that we could have that one meal together. It was, we agreed, the best Thanksgiving of our lives.

I remembered her going into another coma the following Saturday morning. I remembered talking to Jen Chan about one final attempt to break the series of carcinoid attacks–and how happy we all were when it worked.

I remembered the slow steady progress after she came back to us that night. I remembered the permanent pacemaker. I remembered making plans for what we would do in February–how we would go back to the inn on the lake where we had spent the last night of our last vacation and just sit there in that suite and stare out over the frozen water.

And I remembered that Thursday morning when it all went to hell. I remembered the show we were watching, how her body started to shake, how we put her back to bed thinking she just needed a nap, how her blood pressure crashed, how Jen came in–and Jane woke up just long enough to here her say that all we could do now was make her comfortable.

I remembered her waking up again at six o’clock that night, unable to communicate beyond blinking her eyelids. I remembered her drifting off to sleep, both of us knowing she would never wake up again. I remembered saying, “Good night, my warrior princess.”

I remembered weaning her off the ventilator, removing the feeding tube, reading to her and holding her hand and talking to her–and hoping against hope for the miracle that I knew would never happen the way I wanted it to.

As the intensivist had said to me, “You both wanted to defeat this cancer. Now the only way for her to defeat it is to die and take it with her.” That was what was happening.

And I remembered how, during the first coma, when I thought she would be gone that day–that she would never wake up–I realized that I had always told her if someone took her from me the police had better find that person first–and how this disease was taking her from me and was creating that same imperative: kill it so it kills no one else.

Out of those memories came a renewed sense of purpose. I did not care how painful the steps became nor how long I walked alone. I remember saying to myself at one point, “I don’t care if I have to crawl the last five miles or the last ten miles, I am getting to that finish line under my own power.” I knew that walk was symbolic of what we are up against in fighting cancer in general, and fighting neuroendocrine cancer and carcinoid syndrome in particular.

After lunch I joined the rest of the Caring for Carcinoid group that was walking from Hopkinton and two people who were starting from there. They kept me talking about Jane, about NEC, and about why this thing is so tough to diagnose, let alone cure. They let me forget the pain and keep moving forward.

And then we got to Coolidge Corner in Brookline. This young woman came up as we had finished taking a picture. She was somewhere between 18 and 25 by the look of her. She wanted to know what the Caring for Carcinoid Foundation was. We started to explain what NEC is, but she stopped us.

“I know what neueroendocrine cancer is,” she said. “I have it. They took my appendix and part of my lower intestine out last year.” This was, she said, her celebration of her survival and recoverey. She and her friend had walked all the way from Hopkinton.

I did not ask her her name. I wish now that I had. And I wish she had been walking at our pace, because there are things I wanted to say to her afterwards–that I hope she meets the person of her dreams, that she marries that person and that she has children if she wants them; that I hope she lives a long life and that she finds as much joy in that life as Jane and I had over the 21 years, three months and eight days of our too short marriage.

Her life is likely still at risk. We have no cure for NEC. But that operation has bought her time–time in which we can find a way to manage this insidious little demon, time for us to cage it and kill it.

Time for us to arrange things so that they end differently than they did for Jane and me.

I will write more later. I’m exhausted. The good news is I finished the 26.2 miles just after 4 p.m.–about ten hours on the trail.

The better news is that they raised more than $7.5 million through today’s activities. Caring for Carcinoid raised over $30,000.

When I crossed the finish line, I raised my walking stick with two hands over my head and shouted victory. I did not immediately drop down dead. Someone on the team asked me to do it again so I could have a picture of it.  As soon as we had that shot–I’ll post it tomorrow on Facebook and it will eventually find its way here–the official photographer for D-F wanted it repeated a third time.

Many other things to say, but really too beat to go on at any greater length.

There are two new posts on the Resources page. One connects to the transcript of today’s neuroendocrine tumor web chat on Oncolink which has a large quantity of useful information for patients and families.

The other is a link to the abstract of an article in the Journal of Nuclear Medicine on a radiological technique for identifying NETs. The full article requires you pay a fee or be a subscriber to JNM. The article is highly technical and will be of more use to doctors and radiologists than to laypeople.

Sunday is the Jimmy Fund Marathon Walk. I hope to have pictures and a report on that either Sunday or Monday night, depending on how well this 59 year old body recovers from the 26+ mile hike.

If you are going to be in the Boston area Sunday I hope to reach mile 13 by about 10 am- 10:30 am and reach the finish line by 3 pm. Come out and greet the walkers as they reach the top of Heartbreak Hill and head into Boston.

The link below will take you to an article on my Marathon Walk this Sunday.

http://www.southcoasttoday.com/apps/pbcs.dll/article?AID=/20110915/PUB03/109150361

Thank you.

I got a note from a former student earlier tonight. Today she is a neurologist at a hospital in the US. She has been reading about the work we are trying to do on neuroendocrine cancer and carcinoid syndrome. Today she encountered the disease in a patient. The story she told me reduced me to tears. The patient’s cancer has spread from the original site.

It brought back Jane’s last months all over again. It brought back for me how little we know about the disease, how few weapons we have to even slow it down, how little money we spend on trying to find a cure each year.

We probably spent as much on treating Jane in the last four months of her life as we spent doing research on the disease all of last year.

As of tonight, friends of Walking with Jane have raised $3830 in support of my Jimmy Fund Marathon Walk this Sunday. That puts me in second place on the Caring for Carcinoid team as we try to raise $25,000 for neuroendocrine cancer and carcinoid syndrome research at the Dana-Farber Cancer Institute.

The person in first place on our team has raised $4397. The person in third has raised $3450. The team is under $600 away from that $25,000 goal.

All those numbers sound impressive. But last year less than $2.5 million was raised and spent nationally for NEC research. That sounds like a lot of money until you realize that the National Cancer Institute alone spent over $5 billion on cancer research last year.

Please do not misunderstand me. I am truly grateful for every nickel people have donated to the cause of putting this disease down. I know the financial straits that many of you face. I know how fortunate I am to have the kinds of friends who are willing to open their wallets for this cause. I know how fortunate I am to have the kinds of friends who are as generous with their time as so many of you have been these past several months.

This site does not exist without you. The Facebook page (Facebook.com/walkingwithjane) does not exist without you. The t-shirts, the water bottles, the pins, the bracelets–do not exist without you. The over $11,300 we have raised together to fight cancer this year does not exist without you.

And I feel truly blessed whenever I think about those things we have done together so far. Those thoughts can pull me out of all but the very darkest moments–and even those truly dark moments are lightened by those thoughts.

But I also know how far we still have to go. While the news from the research front in recent days has given me hope, I know that none of that news really even hints at a cure. This is going to be a very long–and expensive–fight.

Those of you who have made donations of time and/or money, please accept my sincere gratitude.

Those of you who have not yet made a donation, if you can afford even a few dollars, please go to http://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=449987&supId=331022955 today and make a donation or a pledge to my Marathon Walk. Every nickel donated to me or to the Caring for Carcinoid team will go to research at Dana-Farber into NEC and CS.

Let’s turn no chance into a fighting chance for those with advanced cases of this disease. And let’s turn managing the disease into a cure for those  diagnosed at the early stages.

No sooner do I say I will not do this often than two stories leap off the page at me. This article is much more technical, but reports on a trial of a method for slowing down NEC after it has metastasized to the liver–which is where Jane was when she was diagnosed.

This feels to me to be a very positive development. I hope those of you in the medical field will let me know if this is as promising as it looks in the PR piece.

Here is the link: http://www.marketwatch.com/story/positive-phase-2-trial-results-from-neuroendocrine-tumor-cohort-presented-at-cirse-2011-09-12

I will post both these stories to the Resources page as well as posting them here.