“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.

The NET Alliance has created a number of very professional looking videos on neuroendocrine cancer that explain the disease and what to look for in layperson’s terms very well. The entire series is available on YouTube and I will eventually link to all of those from this site as time allows.

I chose the video on Irritable Bowel Syndrome symptoms that may indicate a Neuroendocrine Tumor because it describes exactly the symptoms Jane had for years. If we had simply known then what I know now Jane might still be with us. Unfortunately, the availabiltiy of this kind of information even two years ago was very slender.

If you know anyone with IBS you need to make sure you share this short video–just under 12 minutes–so they can talk to their doctors about the possibility they have NEC. Very early detection is the only way to beat this disease.

The Caring for Carcinoid Foundation sponsored a patient education conference at Stanford University on September 10. Stanford has begun uploading videos of specific sessions at that conference to YouTube. Over the next few days I am going to view those videos and begin posting links to them here.

The first of these videos is a primer on neuroendocrine cancer. The session runs just over 15 minutes and does a very good job of outlining the basics of the disease.

The second video I am posting today from that conference is a panel discussion on the psychosocial impact of the disease on peoples’ lives and their relationships with others. It runs about 42 minutes.

Both these videos will take you into the world of neuroendocrine patients and their caregivers. When you are finished watching them you will have a better understanding of what Jane and I went through last year–though to totally understand it you have to have the disease, I suspect. And what a caregiver goes through can only be understood once you have been through that experience.

I will eventually post these in the resources page. I am thinking we should have a separate page just of links to videos. Something to ponder.

I wish neither of those experiences on any of you.

Sometimes I feel like a motherless child,

Sometimes I feel like a motherless child,

Sometimes I feel like a motherless child,

Sometimes I feel so alone.

–Richie Havens

There are days I feel completely overwhelmed by all the things we need to do to make what we are trying to do here work. Every day I sit down and construct the list of what needs to be done. It starts with what did not get done the day before–and there are always some of those–and continues with the new things. Then I try to order things from what needs to be done immediately to what can wait if it has to.

Then I start powering through the list that I never seem to get to the bottom of. Sometimes it seems like I get to the end of the day and I have accomplished nothing.

Then I look up and see how far we have come instead of the distance left to go. And even I am stunned by what has been done.

I last posted a report on where we were just about a month ago. That was posted on Facebook. This time I am posting it to our own website. That is one measure of how far we have come in that month. But it is only one measure.

This site launched 26 days ago at 11 p.m. The following day we had 156 views in 24 hours. That is still the most views in a single day, but the average per day has slowly increased every week since. Less than three weeks later we had our 1000th page view. By the middle of next week we should hit 2000–and it could happen by the weekend.

The site has given us abilities we did not have before. People can easily find information on neuroendocrine cancer and carcinoid syndrome without having to worry about where it has scrolled to on Facebook. We can update information much more rapidly and immediately let people know where they can find it. This daily news section means I can hit on particular issues–and people can easily find those posts weeks, even months–perhaps even years–later.

The site is not perfect. Nor is it finished yet. We need some pictures above and beyond the logo. We are still trying to get things set up so we can sell t-shirts and the like to people who want them. All the money raised through those sales will go straight  into our Relay for Life account  for 2012. I hope we will have that going by next week–by the end of October at the latest. We have some other plans in the works as well, including building a press kit to raise awareness of NEC and CS through easy to download stories newspapers and magazines will be able to download for free.

Phil Devitt and Becky Martins are chasing the content for those articles as I write this. We hope to have some sample stories ready for review by the middle of October that we can use to do outreach to papers outside southeastern Massachusetts. The package will include interviews with doctors, patients, researchers, the leadership of the various foundations and plenty of background on what NEC is and how it works.

We raised nearly $4400 through the Jimmy Fund Marathon Walk for research into NEC and CS. The Caring for Carcinoid team raised just under $34,000 including my contribution. If you still want to make a contribution, you have until December 31 to do so. I described the walk in an earlier post. Let’s just say everyone should walk that distance once. And I may even do it again myself. But I think I will have to train harder for next year.

Our Walking with Jane Relay for Life team has already raised $264 for next year’s event. The Atkinsons sold t-shirts, buttons and bottles during the massive yard sale in their neighborhood for the lion’s share of that.

Sometime in October we will bring the whole team in for a meeting to figure out our plans for the next eight months.

I have officially taken on the mantle of Greater Fall River Relay for Life chairperson. A small group of us will meet next week to scout locations for next year in case Somerset’s construction forces us to move the event. The full planning committee will meet Thursday, October 13, tentatively at the Fall River Police Department at 6:30 p.m. if you want to join the planning committee, try to attend that first meeting.

Last weekend I attended the New England Relay for Life Summit in Springfield. While the event was emotionally taxing–I am still too close to my own grief not to have a visceral response to others stories of grief–I learned a lot that will be useful in the months ahead.

The event also gave me the opportunity to meet, however briefly, with the New England Regional president of the American Cancer Society. We have since talked on the phone about funding for NEC and CS research. He has asked me  to put what I told him in writing so he could pass it up the chain of command toward the level where decisions get made. He seemed receptive. I will write what he needs and see if we can’t get more support for research out of ACS.

Today I sent the mission statement and the financial plan to the lawyer–the next step in moving us to non-profit status.

So we’ve made some real progress in the last month. There are still lists and lists of things to do. There are still things left on today’s list I have not gotten to. But there are things on the list that did get done. And every item brings us another step closer to killing this disease.

Thanks to all of you for your work and support. Together we will get there.

“You guys are lucky, you know,” one of Jane’s nurses said to me one of the times Jane was in a coma. “You’ve talked about this.”

I think I must have looked at her like she had two heads. When your wife is unconscious and you have no idea when–or if–she will wake up, the last thing you think about is luck.

Of course she didn’t mean lucky in the traditional sense. There was no luck involved in my knowledge of what Jane wanted in terms of treatment when she was unable to make those decisions for herself. Once a year, every year, we set aside time to talk about end of life issues–not about funerals and burials–but about when it was time to let go and let nature take its course.

Neither of us wanted a life that was not life–and had no chance of becoming real life again. Neither one of us wanted a series of heroic measures that would merely prolong life if there was no actual chance of recovery. And neither one of us wanted the other to be in the dark when it came time to make those decisions.

I will not lie about how difficult those discussions were. Even when we were in good health, those hours were among the most uncomfortable of our relationship. It is not easy to listen to someone say to you, “When the time comes, let me go. No paddles to the heart,  no heroic measures–when there is no fighting chance of my recovery, let it end.”

The weekend before the surgery that conversation was even more difficult to get through. It was no longer a hypothetical possibility that I would have to make that decision–it was terribly real. And while it is difficult to hear–it is also difficult to say.

“Listen,” the nurse said. “Two-thirds of the people that come through that door have never talked about the end the way you two have–about how you want it to be.”

The door she had pointed to was the door of the Cardiac Surgery Post Operative ICU.

“You’re  kidding,” I said.

She just shook her head. “I wish that I was.”

Two weeks later, I learned just how horrible the consequences of not having that conversation could be. A patient was in a deep coma. They asked the spouse what they should do. That person’s only response was “I don’t know. We never talked about it.”

The cries from the next room thereafter still haunt me.

As often as I talk to people about neuroendocrine cancer and carcinoid syndrome I talk about this: that there is no more important conversation that you can have with a loved one than the conversation about end of life wishes. There is no greater expression of love you can make, though it will not feel like it at the time, than to let those you care for know what it is you want when you are no longer able to make your wishes known.

Hard as the last 34 hours of Jane’s life were for me, they were infinitely easier than they might have been because I knew exactly what she wanted that ending to look like.

If you have had that conversation–good. If you have not, have it today. You never know when you are going to be placed in that position. Don’t leave your loved ones in the position of having to say, “I don’t know what to do.”

And after you have had that conversation, make out a living will and sign it.

Do it today.

In dealing with my own grief one of the things I have done is get involved with an online grief group through Hospice of the Valley. Since someone is online there just about 24 hours a day–there are participants from Norway, Greece, New Zealand and Australia–there is virtually no time I can’t find someone to talk to when I need to who understands exactly what it feels like to lose a spouse and wrestle with what goes with that state.

But the group also provides a number of other resources as well, not the least of whom is the widows and widowers’ group moderator, a wonderful woman from Phoenix, AZ who mostly sits on the sidelines but who is not afraid to jump in when the need arises–or when she thinks she can bring something to an individual’s attention.

Last week, shortly after I finished the Marathon Walk, I posted a piece there about the walk and how it had helped me get through another piece of the grieving process. Marty responded with a note about e-Patient Dave–a person with whom, she said, I shared some traits.

I filed her comment away until last night. I was not particularly sleepy, so I went to the two sites she had recommended. The first was a short piece on who he was and what had happened to him. In short, he was diagnosed in 2007 with kidney cancer that had spread to his lungs and several other spots. His prognosis was a life measured in weeks of increasing deterioration. The second site is a 16 minute video presentation–and equally informative.

But Dave is still here. Instead of being a patient patient, he took an active role in learning about his disease. He found an online group of people who had been where he was and learned about treatment options his primary care and local oncologists had never heard of.

He is alive today because he became an active patient. Because he researched like there was no tomorrow–and for him there really was no tomorrow if he did not create it–he quickly became more expert on his disease than the doctors around him.

This is not to fault doctors. They see 6-8 patients an hour eight hours a day, five days a week. The treatment of many of those patients is pretty straight-forward: colds, flus, sinus infections, high cholesterol, high blood pressure, high or low blood sugar. Most doctors spend their days looking at hoofbeats caused by everyday garden variety horses.

They rarely see what they refer to as zebras–diseases so far outside the norm of experience that they may only see one case in a lifetime of practice.

Oncologists have the same problem. They see the major cancers all the time. They need to keep up with the latest treatments of those diseases because that is where they can save the most lives.

And if you think of all the diseases that are out there, just keeping up with the major diseases is pretty close to a full time job even if you are not seeing patients. If you only expect to see one

or two cases of a particular disease over the course of your career you are better off staying current on the ones you see every day.

But if you happen to be a patient with one of those zebras–or a disease that is perceived as a zebra–like NEC–then your survival may depend on how fast you can become an expert on your particular disease.

One of the purposes of this site is to give patients access to the latest information we have on neuroendocrine cancer, neuroendocrine tumors, and carcinoid syndrome.

It is why we posted a link to the Philadelphia conference on neuroendocrine cancer last week and put it at the very top of the Resources page. It is why I will publicize and attend the online brown bag sessions sponsored by Caring for Carcinoid Foundation on OncoLink and post an immediate link to the transcript of those as soon as the transcripts become available.

One of the things Dave talks abut is the importance of online patient/caregiver support groups that can share information that has not yet reached everyone in the medical community. One part of the forum we have set up may eventually evolve into one of those. Right now we are busy trying to keep the spammers out and the forum has no real members. But support groups of that kind are available through all three of the other foundations: CCAN, Caring for Carcinoid, and the Carcinoid Foundation. These links will take you to their support group pages. We will, in the next couple of days, post these direct links on the resources page.

When you are dealing with zebras, sometimes your best resource is not your local doctor but the natives of the Serengeti who know the difference between the hoofbeats of a horse–and the hoofbeats of a zebra.