In doing the research for my last post, I came across some numbers that demonstrate the craziness I have come to expect on cancer spending.

In 2008, the last year for which we have numbers, 12,410 women were diagnosed in the US with cervical cancer, according to the CDC. Just over 4,000 women died of that form of cancer.

According to the National Cancer Institute, the federal government spent just over $90 million on research into cervical cancer in 2010 between the NCI budget and ARRA funds. Additional funds for research came from organizations like the American Cancer Society and other groups.

Depending on whom you talk to, there were 11-12,000 cases of neuroendocrine cancer diagnosed last year. About 12,000 of those who know they are fighting the disease die each year.  We have no simple, inexpensive screening methods for the cancer, and there are some indications that the majority of NETs are never diagnosed, so both numbers may be substantially higher. One study suggests there may be as many as 3 million undiagnosed cases in the US right now.

NET cancer has about the same number of cases diagnosed as cervical cancer. Nearly three times as many people die from NET Cancer–that we know about–in any given year.

Yet our total spending on NET Cancer last year from ALL sources totaled–at best–$3.5 million, and was likely less than that from what I have been able to piece together. Early indications are that spending will improve somewhat this year, largely due to the commitment of the Dana-Farber Cancer Institute to the foundation last year of the Program in Neuroendocrine and Carcinoid Tumors.

The Caring for Carcinoid Foundation says finding a cure for NET will likely cost between $50 and $100 million. Given what we have spent on breast cancer without finding a cure for all of its forms, I am not sure I buy that number. But assuming they are correct, at our current rate of spending we can expect a “cure” about 2025 at best–and more likely around 2040. And that assumes we at least match the medical inflation rate in terms of increased spending over that period.

We really can’t count on government spending to bail us out. The federal deficit is a problem that is likely to leave us where we are right now. The good news, I suppose, is they can’t cut much from an allocation that is close to zero to begin with.

In launching the Program in Neuroendocrine and Carcinoid Tumors, the Dana-Farber Cancer Institute has demonstrated a substantial commitment to finding answers to this cancer in all its forms. But they are going to need substantial, ongoing financial support.

The reality is if we want a cure for this disease it is going to come down to what small operations like Caring for Carcinoid, the Carcinoid Foundation, and Walking with Jane can bring to the table. It means we have to start thinking in larger terms than we have to now. It means we all have to grow.

In tomorrow’s post, I will begin to outline plans to grow Walking with Jane’s contributions to the pie with new money.

If a thing does not have a clear connection to NET/CS, I usually do not write about it here. But I learned something about a different type of cancer last night at a Dana-Farber event that was so stunning and–from a number of standpoints–so important that I am willing to break my normal habits to talk about it.

Most of you know we have an HPV epidemic going on in this country. Many of you also know that virtually every case of cervical cancer is caused by the HPV virus. In 2008, the last year for which we have numbers, there were 12,410 cases of cervical cancer diagnosed in the US. That number represents a significant decline over the last generation or so, largely thanks to the use of the Pap smear that detects abnormal cells in the cervix before they have had a chance to become cancerous. Those abnormal cells are removed in a fairly simple procedure and the woman does not develop cervical cancer as a result. Of course the screening has to continue since the potential is always there for other cells to mutate as a result of HPV, but fewer and fewer cases of cervical cancer are detected every year. But over 4,000 women still die from cervical cancer each year.

In the past couple of years, we have developed a couple of different vaccines for the HPV virus. There has, despite the increasing number of cases of HPV, been considerable hue and cry over the morality of the vaccine–HPV is a sexually transmitted virus–and whether or not requiring girls to get the vaccine before they might become sexually active is a good idea. For reasons I don’t understand there has not been much said about vaccinating young boys at puberty one way or the other–which strikes me as strange since the last time I looked sex generally involves two people. Given our culture, I suppose the illusion that HPV was/is doing little or nothing to the male population may have had something to do with that.

But until last night, I had heard very little about cancers involving HPV outside the cervix.

One of the doctors I sat with last night specializes in head and neck cancer–and he told our group that particular cancer has reached epidemic proportions. The medical community expects 52,000 new cases of this cancer to be diagnosed this year. That number is doubling about every 5-10 years–so by 2022 we can expect over 100,000 cases a year.

And many of them are spawned by the HPV virus–80 percent of them in men in their 30s, 40s and 50s..

The good news is there is an 80-90 percent cure rate. The bad news is the cure leaves the victims so debilitated they cannot work at all for three to four months. And in a significant number of cases, the person’s salivary glands are destroyed, leaving them on a feeding tube for the rest of their lives. The

treatments also often destroy the person’s teeth in the process.

Curing just one patient costs about $100,000–and never mind the productivity and human costs involved.

Yet many cases of this disease are preventable if people would just get vaccinated before becoming sexually active.

Exciting things are happening all around me lately: the launch of the Program in Neuroendocrine and Carcinoid Tumors and its website at Dana-Farber, the significant growth in the number of teams, participants and fundraising for our local Relay for Life, the success of various fundraising programs, news of new drugs and techniques for the cure of other cancers, the list of discoveries about NET and CS at Dana-Farber and elsewhere…

A few weeks ago, a friend observed that I don’t seem to get outwardly excited about much–even when it seems like I should.

Once, before Jane got sick, I would get excited about things–especially positive things that were going on around me. But the weekly–sometimes daily–sometimes hourly–shifts in prognosis and health during the last four months of her life have made me very reluctant about getting too enthusiastic or too depressed about any single moment or event. That piece of me is so thoroughly traumatized and desensitized that I sometimes feel like a block of un-carved wood.

We were both easily excited and discouraged in the early days of her illness. Cancer that has spread to the liver has no cure, we read. We both started thinking in terms of months. The cancer was rare, but slow-growing, we were told. We had permission to think in years. There was a trial we might qualify for. But then Jane’s tumors were too advanced to qualify. There was a potential heart issue. But we could fix that with an operation. But the valves were more damaged than they first appeared–and that was just part of what we went through in the first month after the diagnosis.

We were thrilled when her appetite returned after her first injection–just as we had been thrilled the day after she got the first medication for the swelling in her legs and found the stairs effortless again. Neither effect lasted more than 48 hours.

The days in the hospital spun us around sometimes hourly–and on December 9, we went from planning what we would do when she got out of rehab to me trying to wrap my mind around her impending death within what seemed like minutes.

Now it does not matter how good or bad the news is–my response is perpetually tempered by the expectation that everything could change before I have even had time to adjust.

I don’t know what that makes me. I don’t know if it makes me a more effective advocate or a less effective one. I don’t know whether that makes me a better or worse human being. I only know that it is who and what I have become.

I will get excited again some day, I think. Sometimes I allow myself the daydream of the day we put this cancer to rest–the day we unravel enough of its mystery that it is as vulnerable as it left Jane at the end.

I tear up at the thought.

But I know we are not there yet–and that it is not yet time to celebrate.

Physically and emotionally, it has been a rough couple of days.

The physical part of it derives from four solid days of yard work. A chunk of the emotional difficulty comes from that same source. Jane and I always shared both the yard work and the housework. We sometimes worked on different tasks, weeding different beds or cleaning separate rooms, but at the end of the day, there was someone to share the newly planted regions — or the newly cleaned house — with.

But a piece of the emotional angst has nothing to do with Jane. It has to do with what is going on in the world beyond cancer–the world of politics and work and economics and, increasingly, intolerance. Suddenly, I am seeing a world that values ignorance more than it does knowledge, that wants to believe in myth rather than evidence-backed reality, and that seems to want to drag us back into an idealized past that never was.

What does all this have to do with cancer? I can hear that question dropping from the lips of many potential readers. And, at first glance, it is a valid question. Politics can seem very distant from the battles against these cells run amok that are at the base of all cancers.

In the Middle Ages, the most scientifically advanced cultures were not in Europe. While the Church was busily burning heretics at the stake for arguing the flat Earth was not the center of the universe, Muslim scientists were pushing the borders of human understanding into new realms. They invented the concept of zero and knew the Christian concepts about both the shape of the planet and its place in the cosmos were wrong–not as an article of faith but as the result of scientific evidence.

Today, we have the Taliban, a group so opposed to new knowledge–or even old knowledge–that they destroy all knowledge beyond memorization of the Koran indiscriminately. We have the Saudis, who delight in their oil wealth, but will not let their women drive–or even leave a burning building without their burqas.

Religious fundamentalism destroyed Arab scientific culture. Governments became obsessed with God rather than Man–and Man suffered as a result.

In the early 1970s, a friend told me we needed to be concerned about the growing fundamentalist groups around us. But I was the child of an engineer who had been a key player in putting a man on the moon and returning him safely to Earth. I was surrounded by people who practiced the scientific method in their daily lives and lived by logic and evidence. Knowledge was on the march.

Not that those folks got everything right. They also followed a cost-benefit analysis when it came time to cut budgets–and the result was to end spending on an obscure cancer we know today as NET.

We had declared war on cancer. We had declared war on poverty–and how could the nation that survived the Great Depression and won World War II on the strength of science and technology not win those battles as well? We would, as a nation, never turn our back to the advancement of scientific knowledge. Our Bill of Rights promised religious liberty–and none of us would deny that to anyone. Religion would have its place in helping us develop the wisdom to go forward, but science and an evidence-based approach would be the touchstones of our future.

I apologized to that old friend last night after I read the basis for the latest assault on the Girl Scouts of America. The objection is to the tenant that young women should learn about their bodies and their sexuality. Self-knowledge is the center of my creed–and these folks want to deny young women knowledge that is key to their understanding of themselves.

This kind of thing has been going on for a long time. People routinely reject the evidence-based knowledge on global warming because they do not want to “believe” it. They reject the evidence-based knowledge of evolution because they do not want to “believe” it. Both run contrary to their faith.

Much of what has made our advances against cancer possible has grown out of our understanding of evolution. If evolution were not real, cancer would be far simpler to kill. Cancers evolve to resist certain drugs and treatments. Their evolution causes them to metastasize because that helps the cancer organism to survive. It would be beautiful were it not so deadly.

I am terrified by what I see going on around me. I see a world that increasingly rejects scientific advances in favor of myth and religious dogma. I see a government that is increasingly concerned with belief rather than scientific, evidence-based knowledge. And I see a collection of faiths whose central beliefs argue for love and tolerance being manipulated into instruments of hate and intolerance.

Jane and I were both deeply religious people. But we were also deeply rooted in the culture of science and the quest for knowledge. No particular church attracted us. A walk around the neighborhood or through the woods brought us into contact with the things we needed for our spiritual growth. We knew the Bible, but we also knew the Koran, the Vedic and Buddhist scriptures, and the Tao. And we knew science–and we saw how all of these things blended together at their core.

Religion is a quest for wisdom. Science is a quest for knowledge. True faith cannot exist without the knowledge true science provides. When religion rejects scientific knowledge, it ceases to be anything more than dogma used by those in power to maintain their position. It becomes a series of fairy stories to frighten children into compliance.

Knowledge untempered by wisdom can be equally dangerous. We know many ways to kill people, for example, but wisdom commands us to refrain from doing so.

We are closing in on cures for many cancers. We are years away from cures for others. My great fear is that the growing lunacy will thwart those efforts–that science will be returned to its position in Galileo’s time, when arguing for science led to torture, the name of heretic, and–at best–the putting out of eyes.

We are making a difference.

That’s what they told us at Dana-Farber last Friday. I keep looking at the small amount we raised last year compared to what others could do–and in some cases did do. And I keep wondering how what we have done could mean that much.

But it does. And the reason it does is a little thing called leverage. As a philosopher in ancient Greece once said, “Give me a lever and a place to put a fulcrum, and I can move the world.”

The money we raised last year created a place to put the fulcrum. It seems a little thing, but that money made other money possible. It set some things in motion that in the long term will change the situation for patients with NET. In the long term, it may save lives.

But I have to admit I am greedy. I want the long term to move as quickly as possible into the short term. Sometimes I think people think I am kidding when I say I want this cancer dead–that I am engaging in hyperbole. I’m not. I want this cancer to be like smallpox–a story to scare small children with about the bad old days like the bogeyman. And I want it to happen sooner rather than later.

I want it to happen sooner rather than later because I begin to suspect that my speculations about this cancer are correct: that it is the man behind the curtain–the reason that many cancers are more aggressive than they might be. I’ve been thinking about those feeder cells that allow the carcinoid cells to grow–and I wonder if those feeder cells create an environment that makes other cancers grow more rapidly as well.

And if that is true, then unraveling NET may be one of the key moves in taming those other aggressive cancers.

Yes, we have a place to put the fulcrum, but we still need to buy the fulcrum and the lever and figure out which way things need to move. And all of those items have scary price tags.

We can’t afford to be done yet because the cure is still out there waiting for us. We are doing the basic research that will get us there–but we are not there yet.

Jane’s mantra in the hospital haunts me every day: “We have to keep going forward.”

There are 38 days between us and Relay. There are just under four months to the Marathon Walk. There are just under six months to NET Awareness Day. Each of those event is important–but the days in between are even more important. Every day, I want at least one more person to hear about NET. Every day, I want to find one more donor, one more way to find the funds we will need to win this fight.

Together, we can make those things happen. Jane would like that.

Okay folks, I have a harebrained idea. You either have to help me figure out how to do it or tell me I am crazy for even considering it. I had planned something else for today’s post, but then this idea burst into my brain this afternoon–and I’ve been kicking it up and down the stairs ever since.

The idea is the Three Million Dollar March. I’d like to launch it June 9 and use the initial income for the Marathon Walk on September 9.

The details: We now suspect that NET is NOT a rare disease. We think there may be as many as three million Americans walking around with NET right now–just under one percent of the population. Most will never know they had it because it will cause something else that their deaths will actually be attributed to: heart disease and aggressive forms of lung, breast, or prostate cancer being the most obvious examples. But all of those were really caused by the underlying NET that will never be discovered.

Last year, we spent barely $3 million on NET research. That’s about $1 for every potential case of NET out there. The idea is to double that amount by getting 3 million people to donate $1 each.

The idea grows out of two things I saw in the last 10 months. In September, I was at a yard sale at a friend’s house trying to sell Walking with Jane items. It was not going well. After noon, I changed tactics and just asked each person who came through for a $1 donation–for which I gave them a Walking with Jane button. We did over $200 in four hours.

At an ACS leadership event, we were asked what we thought was the simplest way to raise money. One group decided to try their idea. They went around the room and asked each person there for $1–and no one said no. And they were not handing out buttons.

How do we get three million people to give us $1?

The point of the exercise is more than the dollar, though. It gives us three million more people who have at least heard of NET and Walking with Jane.

The question is, how do we make this work? Obviously, mailings and credit cards are counter-productive–we’d eat up all the money raised in stamps and credit card fees–it almost has to be a door-to-door effort. But you may have other thoughts.

And of course, we won’t say no to larger donations. But the key needs to be three million people and three million dollars.

Clearly, I don’t expect to raise $3 million in three months–though that would be mind-blowing. But is that figure possible over the course of the 12 months that starts June 9?

Thoughts?

Looking over  my posts for the last week or so, I realized how depressed and depressing I have been lately. In the words of the old cliché, however, it is always brightest before the dawn.

Jane’s sister and I took a field trip to Dana-Farber today to talk with Dr. Matt Kulke, who heads up the Program in Neuroendocrine and Carcinoid Tumors, Sarah Church from the development office and two of the researchers involved in a piece of work that has led to what I can only say is one of four major new moves in the fight against NET.

I’d go into all four of those new developments here and now, but I really don’t want to steal the program’s thunder. That is why I have left the two researchers’ names above in the fog. Some of the work is well advanced and ready to go to press. Other pieces are in the editing and revision stage while another piece of news is just getting started this summer.

This much I will say: the information that will be released in the coming weeks and months ranges from one end of the research spectrum to the other–and all of it will create new knowledge and new understanding of the disease. Some of it will become the foundation for another wave of research that may finally give us enough information that we can start talking about the day we will cure this disease. Two parts of this research should be appearing on the Program website fairly soon. At that point, I will be more comfortable writing here about the details of that information.

I also got to see the living face of the enemy through a microscope today. There are  actually two different kinds of cells involved in this little nasty: a carcinoid cell and a group of feeder cells. All of them seem to float independently of each other, but I was told that the carcinoid cell does not grow in the absence of the feeder cells. It was not clear what the feeder cells are producing–but they are producing something that stimulates the growth of the carcinoid cell. One of the things they are now thinking about is finding a way to kill or remove the feeder cells even if the carcinoid cells cannot be killed or removed.

I cannot describe what it was like to finally see what this disease looks like up close. Externally, I remained the calm tactician and newsman. I asked the questions that would help me understand what I was looking at and listened carefully to what the scientists were telling me. I was thankful yet again that when I get angry, I get very calm and calculating. I need to understand this thing because we cannot fight what we do not comprehend and because I need to be able to explain things to the people who do not get the opportunities I get to see these things firsthand.

But as I looked through that stereo lens, I could feel the anger and the determination returning. I have come home tonight with a new resolve and a rebuilt spirit.

We’re going to kill this thing–and everyone can help.

Seventeen months ago today, I lost the other half of my soul.

I took flowers to her grave today. I took a second bouquet for her mother for Mother’s Day. While I was there, I ran into her cousin who sold us the headstone for the plot Jane shares with her mother. He remembered me, though I was so lost in my own thoughts it took some time for his name to come back to me.

Today was bad. Tears were never far away. I had meetings to prepare for and a dozen other projects I needed to work on. I am writing this just before 11 p.m. The will to work on stuff just never arrived. The day vanished into grief and attempts to escape from grief. I feel broken and old again tonight.

There is nothing pretty about loss. Movies and TV and plays make it seem easy the way they make recovery from major surgery a two or three-day affair. Some people subscribe to this myth that, magically, it all gets better after a year. For some, I suppose it does. That has not been the case for me. It has not been the case for a lot of the people I meet in grief groups.

I wrote yesterday about mortality–that we all die eventually. Eventually, about half of you reading this will experience what I am experiencing now. The one you love will die, and you will be the one left behind to deal with all the unfinished business and the grief. The emptiness on the other side of the bed, while it is a good image and decent metaphor, does not even come close to the reality. But it is as close as I have found to take you to the emotional state this is.

This will sound like a broken record. I have said this before, but it bears repeating: take care of your self. Go to the doctor for that physical every year and don’t hesitate about going in between if something does not seem right to you. Get the recommended tests at the recommended intervals. Make sure your significant other does likewise.

Tell the people you love that you love them–but more than that, show them that you love them: hold hands in public. Buy them flowers for no better reason than that it seems like a good day for that. Shower each other with love in every way you can think of–and then invent some new ones. Leave nothing that needs saying left unsaid at the end of the day.

Thirty-six months ago, the school year was winding down for us. Retirement was close enough we could smell it. Twenty-four months ago, Jane’s feet were getting swollen at the end of the day, but it didn’t seem like a big deal. Seven months later, she was gone.

Now, I try to organize fundraisers for the disease that killed her. I walk long walks with strange shirts on my back. And I stand at her grave on the tenth of every month trying to figure out what happened and why. The answers are all unsatisfactory.

I love her that much–and I miss her that much.

We are all mortal–or at least our bodies are.

I was forcibly reminded of this yesterday when I discovered I am mildly anemic–and have been for at least the last year. My red blood cell count is a tad low, as are my hemoglobin and hematocrit levels. Because I am a vegetarian, this is likely the result of a B12 deficiency, but could be one of a number of other things–some of them scary, others of them not.

For now, I will consciously be trying to get more B12 into my system. In a few months, we will do blood tests again and see if that has made a difference. If it hasn’t, then it will be time to start looking for a more serious cause.

I have been a bit careless with my diet since Jane died. Sometimes, I skip a meal. Other times, I consume whatever comes first to hand. Periodically, I make something elaborate. But where there was once joy in cooking or sitting down for a formal dinner, now there is only the reminder of Jane’s absence. It is not a pleasant experience, and part of my poor eating habits derive from willful avoidance of that experience.

The rest of my semi-annual visit to my primary care doctor went well enough. My cholesterol is under control, my triglycerides are well below 100 and my HDL has moved into the healthy range. Even my blood pressure is a happy camper.

But Jane’s numbers were great, too. We never know what is lurking down there. “Life,” as one group in central Pennsylvania puts it, “is uncertain: eat dessert first.”

I remember going out for a walk with my grandfather when I was in my early 20s. He was in his mid-80s and still walked everywhere he wanted to go. But he had slowed down over the last year and knew his heart had started to fail. It was a somber yet upbeat stroll. We talked about a lot of things, including what he hoped would happen with my grandmother after he died.

As we came up the sidewalk toward the house, he stopped and pointed out a bare spot in the grass.

“I don’t know if I will be here in the spring,” he said. “But I have some seed in the garage if I am.”

Jane lived the same way, especially that last summer and fall. She did not expect to live, but she had plans if she did that went far beyond beating her cancer. She had painting projects and cross-stitch projects and carpentry projects and writing projects–and none of it was a bucket list. It was stuff she wanted to do–just like my grandfather’s seeding project.

I don’t know where I will be a year from now–what the state of my mental and physical health will be. But there are seeds I am planting now that will need tending whether I am here or not. And more seeds I will plant then if I am here to do it.

I am facing a crisis of confidence today. I am wondering what the point of all this activity is. I am wondering if I

am really making any difference at all when it comes to NET. I am wondering if I am really making any difference in the Relay for Life of Greater Fall River. I am wondering if I just walked away from all of this if it would make any significant difference.

I get up in the morning and I work on cancer. I have lunch, then I do some more work on cancer. Tonight, I will have dinner and work on cancer some more.

Virtually every day, I write something for this site. On a good day, there are 60 views of what is here. On a bad day, we never get out of single digits. And those single digit days have been increasing as the weather gets nicer. I keep working to build an audience–as do the other folks working behind the scenes–but that audience does not fully materialize.

Dana-Farber now has the Program in Neuroendocrine and Carcinoid Tumors. Jane’s death had something to do with that. But a $1.8 million donation over the next three years from an anonymous donor likely has more to do with that than anything I have done. Yes, we have launched the Walking with Jane Dybowski Fund for Neuroendocrine Cancer at Dana-Farber. But we have had little success in raising money through it.

Yes, last year we raised about $30,000 for NET research and another $4,500 for cancer research generally. But we will be hard pressed to match that total this year from what I have seen so far. While our Relay for Life team will likely beat last year’s efforts, the NET amount raised so far has begun to worry me. We just don’t seem to be getting any traction there–and I don’t know how to fix it, despite all the workshops I have been to and all the conversations I have had.

I’d like to say that my being chairman of the Greater Fall River Relay is the reason we are ahead of last year. It isn’t. The fact is, I am largely a figurehead. I run meetings, give the occasional speech. But the real work is done by the committees–and I have never seen any group work as well as this one does. The truth is, this was an event that was ready to take off before I ever crossed the threshold.

People believe otherwise. At Dana-Farber, I get introduced to the heavyweights as though I have done the unheard of. People well up the chain of command at ACS actually answer my emails. And I don’t understand any of it. I have done very little.

I won’t stop doing what I am doing. I may sometimes wonder if I am making a difference. But as someone once said to me, the outcome matters less than the attempt.