“Steve Jobs has died…of pancreatic cancer,” Scott Pelley said just a few minutes ago on CBS.

I spent most of my life working in journalism–both as a reporter and as a teacher. The first thing my first editor told me was it is more important to get it right than to be first in print. The first thing I taught my students about being a reporter is always get the facts right. Being first is not as important as getting it right.

Getting the facts right means the truth matters to you. Getting the facts wrong sends the message that you don’t care about the truth. And journalism trades on its credibility.

Tonight CBS gave me one more reason not to trust them.  But this one hurt more than the other betrayals of the mainstream media.

Steve Jobs did not die of pancreatic cancer. He died of neuroendocrine cancer that originated in his pancreas. That may, to some, seem a fine distinction. It is not.  Had he had pancreatic cancer he would have been dead several years ago. The liver transplant that bought him several years of life would have done nothing for him.

A normal tumor takes up space, consumes resources and gradually destroys the organs a round it. It is a pretty passive creature.

But a neuroendocrine tumor takes an active role in the body’s chemistry. Once it forms–and it can form anywhere, the pancreas being one of the rarer locations–it can produce nearly any hormone or peptide the body produces. And those additional chemicals mess up the body in a variety of ways–none of them pleasant.

I have seen a death from pancreatic cancer. it is not an easy one. But death from NEC is even more difficult. Those extra years of life likely came with a steep final cost.

Steve Jobs was a noble human being. He did a lot of things that created the world we live in. His popularization of the graphical user interface changed the way people used computers. It made possible desktop publishing–which started a revolution that leads inexorably to this page–and everything else we see on the internet. Without DTP the content of the Internet is controlled by the same handful of organizations that control both the print and the broadcast media.  He saw a need for ultra small computing that led to the Blackberry which led to the iPhone which led to the iPad and will lead us god only knows where. In many respects, his vision is, technologically, the world we live in today.

Arguably, there is no Arab spring without Steve Jobs, no occupation of Wall Street. Where those things will lead none of us knows. But to the extent that good grows out of them, Steve Jobs will have had a hand in it.

Jobs led a life that mattered. His death matters. What he died from matters.

Just as Jane led a life that mattered. Her death mattered. What she died from matters.

When the news media get it wrong they condemn others to the deaths these two great minds suffered. As one who has witnessed death from this disease far too closely and far too personally, I can tell you that CBS’ blunder  is deeply disturbing.

It is disturbing to me as a reporter because ethically I have an ongoing love affair with truth and accuracy. It is disturbing to me as a citizen because I need to be able to rely on the professional media to tell me the truth about events I cannot be physically present to witness.

And it is disturbing to me as an advocate for a disease about which the general public is unaware because it makes my job more difficult. When you are hunting horses disguised as zebras, it doesn’t help when the media calls it an antelope.

FRIENDS,
STEVE JOBS HAS DIED!
He had pancreatic NEC.

My retirement officially began the beginning of last month. Jane’s retirement was supposed to begin on the same day.

We had a thousand plans for the years we believed we had ahead of us. She was looking forward to playing more tennis, writing a couple of books on teaching science, doing the travel that teaching prevents. We both had interests in politics and community service.

And we were so looking forward to spending time with each other–time we had not had when we were teaching because of the demands that profession places on its practitioners.

My own priorities involved writing about journalism and English, working in the garden, and pursuit of some of the political issues that have bothered me for years.

Jane’s death changed everything.

I still want to do the reading, the writing, the gardening. I want to pursue the political issues that need to be addressed.

Instead, my energies are burned up by fighting through the cancer bureaucracy, trying to learn all I can to raise awareness about a disease no one seems to have heard of, and raising money in support of research into that disease.

Because dreams are valuable. And while my dreams have turned to nightmares, I can, perhaps, prevent some other folks’ dreams from turning into this slow nightmare.

I remember walking through the halls of Brigham & Women’s Hospital the night before Jane died. I looked down at my feet and suddenly realized that somewhere that fall the spring had gone out of  my step. I was walking the way my Grandfather had. I asked myself when I had suddenly grown so old.

I walked down to the mailbox this morning–and asked myself the same question.

The American Cancer Society and the Jimmy Fund both talk about creating more birthdays through research. The slogan sounds nice.

But creating more birthdays does far more than just adding years to a patient’s life. It preserves families. It preserves marriages. It preserves the futures of both the patient and their loved ones. It creates laughter. It creates joys that would otherwise not exist. It keeps the spring in a spouse’s footsteps.

One third of the population will have to deal with cancer at some point. It used to be a hopeless diagnosis. The first question people asked in my youth of someone diagnosed was, “How long do you have?” There are still cancers about which that is the only real question.

But for many cancers, the questions are now about treatment options and survival rates. And that raises hope for the cancers for which there currently seems to be no hope.

We could not prevent Jane’s death from neuroendocrine cancer. But the day will come that, for some other patient in her circumstances, we will have the tools and the knowledge to prevent his or her death.

And that may help put the spring back in my step.

The squeaky wheel gets the grease, my fifth grade teacher, Mrs. Ehlers, used to tell us.

As I think about cancer research funding I find I have to add a corollary to that rule: When there are lots of squeaky wheels, your wheel needs a celebrity spokesperson.

After I wrote my blog this weekend about the politics and business of cancer I got to thinking about why some cancers get more attention than others despite their relative ranking in terms of incidence. Lung cancer, for example, has been the number one killer in cancer for years–and yet it finishes third in terms of how much the government chooses to spend on it.

A friend in one of my grief groups suggested a while back that lung cancer has a blame factor attached t it: you get it because you have knowingly engaged in a habit that clearly causes cancer, so therefore it is your fault if you get it. And I think there is some truth to that. But I also think some people believe in the myth of John Wayne–who was allegedly diagnosed with lung cancer in the early 1960s, had a lung removed, and lived a long, healthy, and active life thereafter–creating the illusion that people could routinely beat the disease.

Breast cancer, when I was much younger, was a disease no one talked about. If you got it you didn’t talk about it because–well–it meant talking about a very visible piece of female anatomy that was supposed to remain hidden and private.

Then Betty Ford, the president’s wife, was diagnosed with it–and she brought it all out in the open so that it was ok to talk about it. Her celebrity status had an influence, however, not only on the visibility and acceptability of the disease, but also on funding for the disease.

Colon cancer was another cancer no one wanted to talk about. Our awareness of the disease shot up significantly when Katie Couric lost her husband to the disease. That she then went on TV and had a colonoscopy on camera suddenly made it ok to talk about both the illness and the procedure. I remember the almost hushed and embarrassed terms with which my own doctor had brought up the subject with me a few years before. I don’t think things are the same today.

You can also see this in terms of pancreatic NETs with Steve Jobs. The few people who know about NEC beyond those who have it owe what little they know to his case. Unfortunately, the press has done poor work explaining Jobs situation. They hear the word pancreatic and think NEC is just another form of pancreatic cancer.

But the Jobs case has had a significant impact on the amount of coverage his form of NEC gets. Despite the fact Jobs’ form of NEC is among the rarest of the rare, there are as many pieces written in the popular press on pancreatic neuroendocrine tumors as there are on all the other forms of the disease combined.

And the end of neuroendocrine cancer is something I suspect most Americans would have real trouble discussing. Uncontrolled, frequent diarrhea that reduces one to the status of an infant is not something anyone wants to talk about. Menopausal women are embarrassed by their hot flashes–so anyone experiencing the flushing that goes with NEC–and most women will assume it is just another hot flash–will be just as embarrassed.

The fact that many cases go undiagnosed–or are misdiagnosed as menopause or anxiety driven digestive problems, or irritable bowel syndrome–doesn’t help much either.

I am neither rich nor a celebrity–nor was I married to one. I’m just trying to be a squeaky enough wheel that someday soon we will attract a little more grease–maybe enough grease that we won’t need a celebrity spokesperson.

Because I would not wish this disease on even one of them.

What I am going to say today some may find offensive. But I am at a level of anger that is hard for me to let go of.

Most cancer funding in this country comes from the federal government through the National Cancer Institute.The NCI makes its decisions on what cancer research to fund–and how much to spend–based on how much money the congress has appropriated and, apparently, what group has the loudest voice.

The group with the loudest voice–at the moment–garnered $631 million from NCI last year. That is more than the NCI decided to spend on the next two categories of cancer combined. And that form of cancer that got the big check is only the third most common cancer in the US. The number one form of cancer in the US finished third in NCI spending with $281.9 million appropriated. The second most frequent cancer  finished second in spending with$300.1 million.

Number four, at $270 million was also fourth in incidence. But number five on the frequency chart finished seventh in research cash with a paltry $22.6 million. But the sixth and seventh most frequent cancers received $102.3 million and 122.4 million respectively.

The top four cancers all had significant increases in funding from 2009 to 2010. With the exception of a small increase for number 9, all the others in the top ten took cuts.

How did neuroendocrine cancer and carcinoid syndrome do? They are not even on the list of all the cancer research funded by NCI last year. The only conclusion I can draw from this is the federal government spent so close to nothing on this last year as not to make any difference.

That’s right. 11,000+ people were diagnosed last year with a cancer the NCI barely acknowledges exists. We are witnessing a cancer whose diagnosis is increasing by five percent a year–and which may well have far more cases being misdiagnosed or totally missed every year–whose researchers essentially have to rely on the kindness of strangers for funding.

I say “barely acknowledges” because the federal government did organize a session for doctors to get together to talk about what the research priorities for NEC ought to be in the future. And maybe some money trickled in from some other cancer research somewhere. It’s possible.

But given the current mood in Washington, I don’t see things getting much better on the NCI front.

But, you say, what about cutting some of the money from the top fund-getter? Surely we could get something there? More than twice as much money as the next two combined? Surely taking from that would not cause a fuss.

I left those top ten cancers nameless to this point for a reason.

What would the political price be for cutting the budget for breast cancer? A cancer with a month devoted to raising awareness about it?  A cancer that is so big in the public mind it can get the manly men of the NFL to wear pink shoelaces? A cancer whose image is so big and so pervasive that it gets #1 money despite being the third most frequent cancer in the US–ahead of lung cancer (#1) and prostate cancer (#2)? And get twice as much as either of them?

And I can’t bring myself to argue against funding for breast cancer even if it meant more money for NEC research–which it probably would not. My sister is alive today–about 15 years after being diagnosed with a particularly  virulent form that was on the edge of going from stage 3 to stage 4–because of the money we have poured into that disease. My sister-in-law is not buried next to my wife because research into early detection spotted her virulent form of the disease at stage zero. She says she thinks of the experience as no more than a cold she got over–when she thinks of it at all.

But last year we spent less than $3 million on NEC and CS–probably less than $2.5 million. And less than that the year before. And less than that the year before.

Without early detection–actually accidental detection–Jane never had a chance. She never had the chance my sister had. She never had the chance my sister-in-law had. She never had a chance because our system of funding research is based on cost-benefit analysis and who yells the loudest.

No drug company is interested in the disease because they don’t see a profit in it. That is why we have had only one drug approved for NEC in the last 30 years. And that drug only addresses symptoms. It is not a cure or anything that looks like a cure. And it only works on the tumors that start in the pancreas–the least common of all NETs. And I’d be willing to bet we would not even have that if Steve Jobs, CEO of Apple Computers, had not been diagnosed with the pancreatic form eight or nine years ago.

Even the other drugs we have were not developed to treat NEC. They were created for use in chemo-therapy patients who had problems with diarrhea as a side effect of their treatment. Now I read that Affinitor–the new NEC drug–has successfully finished phase three trials for use in breast cancer treatment. The cynic in me wonders if it was developed for that all along–and its use in NEC was pure serendipity. Not that I really object one way or the other. When you have but one or two arrows in the quiver you are not too proud to pick up what is lying on the ground.

People wonder why I worked so hard and badgered so much in my efforts to raise money for the Jimmy Fund Walk this summer. People wonder why I button-hole anyone I think may be a policymaker for cancer charities that may be able to shake loose even a few pennies for research–why I say I will go anywhere and talk to anyone if it means I may be able to find a few more dollars to research and treat this disease.

People wonder why I spend hours every day chained to a computer, working on this site, writing letters–why I seem to be working even harder in retirement than I did as an English teacher in the classroom.

I have watched people die: I have seen death by lung cancer, by breast cancer, by prostate cancer, by colon cancer. I have watched people die in automobile accidents and the slow descent into Alzheimer’s. I have watched them die of heart attacks and pulmonary fibrosis and cystic fibrosis. And every one of those deaths was painful.

But the last weeks of my wife’s life were more horrible than any of them. I watched her world shrink to the size of a hospital bed.

But that was not the worst.

I watched that proud woman realize she no longer had any control of her bowels.

But that was not the worst.

I saw her despair when I had to tell her I could not pick her up and carry her to the bathroom without tearing out the wires and tubes that were keeping her alive.

And that was not the worst.

I watched her shame as I helped change her diarrhea soaked bed linens.

And even that was not the worst.

I watched her mind descend into chaos.

And even that was not the worst.

For what was the worst, I have no words–I can only say it is a vision that haunts me even now, nearly 10 months later–a vision that combines every aspect of every death I have ever encountered in the worst possible ways.

That finally, after a long struggle,  she died peacefully in my arms is the only thing that allows me to go on.

The thought that somewhere someone else is going through that hideousness as I write this–as you read this–drives me–as I hope it will drive you–to do all I can to remove this nightmare from the world, so that some day no one will experience what she went through and what I went through.

And god help anyone–or anything–that gets in the way.