With under 100 pages of The Emperor of All Maladies left to read, I am reminded more and more of a line from The Voyage Home–which was the fourth Star Trek movie. In it, Dr. Leonard McCoy is walking through a late 20th century hospital and likens what is going on there to the Middle Ages.

The history of our efforts to find the answer to cancer–in children and adults–has a truly macabre feel to it: The early surgeons trying to cure breast cancer by increasingly radical surgeries–the most intense of which left patients not only permanently disfigured but crippled as well; pathologist Sydney Farber injecting children with cytotoxic chemicals that had killed cancer cells in a test tube–but killed healthy cells just as effectively; the STAMP trials, in which patients were given such massive doses of chemicals that the treatment wiped out the bone marrow–which then had to be replaced; the use–and misuse of radiation.

The politics of it also has the feel of the medieval church and its charges of heresy over honest differences of opinion: the American Cancer Society–in the early days–pushing for federal money to find a cure, but not to do the fundamental genetic and biological research on which a more effective cure might be based; the intense dislike–bordering on hatred–that existed between chemotherapists, surgeons, and radiologists; and the deep disrespect of some of the medical people for mere researchers. Just getting people to agree that surgery, chemotherapy, and radiation therapy could

be used together to bring about some cures required years and several miracles.

And in the middle of it all are the patients who, like medieval parishioners, come before the high priests full of faith, longing, and hope for a brighter future. While the book focuses largely on the medical folks and the researchers, we see the true heroes only in brief vignettes. Sometimes their stories are achingly–albeit too briefly–told through the eyes of the author as he paces his rounds in the clinic. Other times they are the faceless thousands undergoing this trial or that new technique–all of them faithfully believing that enough pain–enough pushing closer and closer to the edge of death–will deliver a true cure–and too often being let down.

But just as the Middle Ages put down the foundation on which the Renaissance and the modern world were built, so too did the battles and sacrifices of the 20th century. While our understanding of the disease and how to fight it are still far from perfect, the strides against some forms of the disease have been impressive.

But there is still a long way to go–and it would be far better–and far less expensive in the long run–if we worked on preventing cancer in the first place. There are plenty of things that we know with certainty are carcinogenic. Limiting and ending exposures to those things–cigarettes and tobacco as well as a wide range of chemicals for a start–would put a serious dent in cancer and the heartbreak it causes.

And early detection of all forms of cancer would also make a considerable difference in people’s lives. Cancers detected as precancerous lesions or in the very early stages are much more easily dealt with than cancers that have metastasized. Early diagnosis is always better than late diagnosis.

And that is especially true of forms like NET where once the disease gets beyond fairly straight-forward surgery, we are looking at a holding action and palliation rather than any long term cure.

I’ve had a busy couple of weeks.

I demolished the room that used to be our study/computer room, boxed up all my books and moved them to the basement, repainted the walls, moved all the furniture that was in the bedroom into that room, then painted what was the bedroom and set it up as a temporary office/permanent guest room. There were a couple of minor carpentry projects involved there as well.

I had a conference call with people at Dana-Farber about the Walking with Jane Dybowski Fund, approved the copy for it, talked with a friend at the Caring for Carcinoid Foundation about setting up some teams for distance races to benefit their organization, talked with a former student who is setting that up, wrote something nearly every day for the website and tried to keep up with what is going on in the NET/CS universe in general.

We also had our first ACS Relay For Life captains’ meeting and got a chunk of the Walking with Jane team put together.

And I managed to eat and get some exercise in every day–including the vocal exercises I am doing to build my voice back up.

Did I mention having a root canal done in the middle of all that?

Needless to say, something had to give. For the last ten days I have gone out to the mailbox, collected the mail, and brought it into the house–where it joined an increasingly huge stack that teetered increasingly like the towers we used to build out of blocks when we were growing up.

Today, with tower having reached more than a less than sturdy foot in height, I sat down to go through it. The job took more than two hours.

There were some magazines in the pile. I set those aside to read later. There were four bills in the pile. There were two bank statements.

But the vast majority of what was there were requests from charities for money. If I sent each of those charities just $10 it would have totaled over $500.

There were two requests from the Democratic Party. There were two requests from the Republican Party. I wrote both last summer to tell them to save their stamps–that I disliked them both and that I would be sending no money to either under any circumstances, so would they please stop sending me letters looking for money. Where I was getting two letters a month, I am now getting two a week.

Then there were the letters from the various Christian relief organizations who want to feed, clothe, and convert the heathen. The idea of feeding the hungry, housing the homeless, and treating the sick resonates with me. But I prefer my charity to be untinged by even the remotest sense of spiritual blackmail.

I also now find myself on the list of every cancer foundation in the universe. In the last ten days, I got three letters from one group alone whose Charity Navigator rating is one star.

But by far the worst are the alleged environmental foundations. The send huge envelopes, some seemingly daily, filled with enough letters, brochures and newsletters to create a huge carbon footprint even if all that paper is recycled. The gasoline required to cart it to my door likely pumps more CO2 into the atmosphere than all the other charities combined.

Eventually, Walking with Jane will have its tax exempt status and we will begin soliciting direct donations that will go from us to the various organizations. When we do, I promise we will do this differently. We will ask for money directly twice a year–maximum. We will not share names and addresses with other groups. We will not flood either your real mail box or your email box.

And if we ever do anything like that, I want you to call me on it.

Once upon a time medical students did not hear very much about either NET or CS. I’ve told the story here before about Jane’s initial diagnosis and the reaction of both her primary care doctor and her first oncologist: neither knew much about the disease.

That seems to be changing.

My niece is currently a medical student. She is currently preparing for the first phase of her medical boards. In her first two years of medical school courses NET and CS have come up three times.

Admittedly, she may be more sensitive to NET/CS as an issue because of what happened to her aunt. The terms may register more deeply with her as a result when she hears them. Still, the fact is this particular form of cancer is coming up in her medical school classes despite its general status among many in the medical community as a zebra.

She tells me the topic first came up when they were studying the heart as one potential cause of right sided heart failure. It came up again when they discussed the gastrointestinal system, and again when they talked about the neuroendocrine system.

Of course three mentions over the course of two years does not seem like a lot. But given the overwhelming number of things that have to be covered in those

first two years, any mention at all is a plus. Combine that with the knowledge that the courses are geared toward preparing students for the overarching medical board exam and it would seem, at least to a layman’s eyes, the NET/CS has gained somewhat greater visibility–if not importance–in the world of medical training.

I have talked before about the importance of early detection when it comes to NET, one major step in the process of discovering more cases of NET/CS sooner is raising awareness among medical professionals about this peculiar form of cancer. My niece’s program seems to be doing exactly that.

And if all the medical schools in the country are based on preparing students for the same exam, then it would seem logical that other programs must be doing the same thing.

That could be really good news.

Any time I hear someone say IBS–Irritable Bowel Syndrome–my ears perk up.

This afternoon I was listening to the Callie Crossley program on WGBH Radio. They were talking about drug shortages and the difficult position those shortages put patients, doctors, and pharmacies in. I remember how often we would go to the pharmacy at Dana-Farber for Jane’s octreotide and have to settle for a partial prescription. I remember being in the hospital during one of Jane’s crises and being told that the hospital was looking for more of the drug at other area hospitals because Brigham & Women’s supply was exhausted.

Today there are 250 drugs in short supply–many of them drugs that are used to treat cancer patients. I can truly feel their pain.

Then a woman called in. She said she had IBS and asthma–and that she was having trouble getting the drugs she needed because of shortages. But I was not paying much attention at that point. My mind was screaming NET at me. The combination of IBS and asthma is one of those things that rings the alarm bells in my head. It combines two symptoms that are related to NET.

I say this with such great frequency that to those of you who read this regularly I probably sound like a broken record: IBS is not a diagnosis. It is doctor-speak for “There is something wrong in your digestive tract that is causing gas, diarrhea, and intestinal discomfort, but we do not know what.”

What that needs to mean to patients is, “Keep looking.” And they need to insist doctors keep looking until they find the real underlying cause.

IBS can be caused by many different things–lactose intolerance and a gluten allergy among them. But NET is also on that list of possibilities–and while it may not be the most likely cause it is among the more dangerous.

But if that IBS is accompanied by other symptoms–among them the kind of wheezing that sometimes goes with asthma–then NET  needs to be moved up higher on the list of possibilities.

More than likely the woman on the radio today does not have NET. More than likely her asthma predates the IBS. More than likely her IBS is being caused by something other than NET. But she–and everyone who suffers from IBS–deserves a real diagnosis that gets at the real issues causing her symptoms.

IBS is a description–it is not a diagnosis.

People keep telling me we have accomplished a lot since May. They point to the two Relays we did last year, to the Walks for Hunger and Diabetes I did last spring, to the Jimmy Fund Walk, to this website, to the work I am doing for this year’s Greater Fall River Relay, to the Walking with Jane Fund for NEC…

Objectively, it does seem like a lot. But I know all the other things that are on my list that I have not gotten to. Some of them, like the NET Cure Crawl, require more time and energy–and bodies–than I realistically have just now. The idea is there, but I have no real idea how to move it toward reality. I’m frustrated that when I get to the end of the day, that there are more things on the to-do list than when I started–and that too few things have come off the list over the course of the day.

That progress has been even slower on the non-Walking with Jane fronts only adds to the frustration. I am trying to re-organize the house but am at that stage where all I feel I have actually done is move the mess from one location to another. You know the stage where everything looks worse just before it starts to get better? That is exactly where I am. Three-quarters of everything we own is in boxes. I went to get something I needed for a meeting last night and could not remember where I had put it. It is here somewhere–I just have no idea where.

Of course, there is still Jane’s closet and the drawers with her clothes in them. Once a week, I will open a drawer with the intention of going through it. I close the drawer without doing more than look at whatever is at the top of the drawer. Dealing with that is not something I can do yet. People tell me the time will come–but not yet.

Jane and I were unrepentant goal-setters and planners. We had plans for every day, for every week, for every month, for every year. We had five-year plans and ten-year plans.

On my flight back from Seattle in December, I sat with a notebook, blocking out the plans for the next five years, for this year, for the month of January–and for every day of the first week of the new year.

There are things on that list for the first week I still have not managed to do. Today is the last day of February–and a good chunk of January is still waiting for my attention.

But that is life. We plan. We work toward the goals we set. We believe we will create a future that is better than the present. Sometimes we encounter success. Sometimes we encounter disappointment. But every day we learn something new–every day we move one step closer to that imagined world.

It may seem the journey takes too long and that we are getting nowhere. But every day moves us forward–and sometimes that is the point of the exercise.

If I eat something that is too spicy or too physically hot, I sometimes get a small blister on my gums. After a day or two, the inside of my mouth heals and all is right with the world–at least until the next hot-out-of-the-oven pizza or garden-grown jalapeño.

Back in January, I had one of those episodes that blistered three different spots in my mouth. Two of them were gone in the customary day or two. But one on the upper right gum hung around. And hung around. And hung around some more. Since I knew I had a dental cleaning coming up, I decided it would keep until then–unless it became more than the annoyance it was. Absent that cleaning on the near horizon, I would have made an appointment to get it looked at.

But this weekend–when of course there was no one available to look at it–an awful thought occurred to me: What if this is a cancerous lesion? If it got this big this fast, I could be in a lot of trouble here.

Fortunately, my

dental cleaning was this morning. The hygienist asked if I had any pain or anything unusual going on. I told her about the bubble on my gum. She looked at it, said it was a fistula–and that it meant I probably had an abscess. Normally, an abscessed tooth results in real pain, but because the fistula was acting as a drain for the fluids, no pressure was building up to pinch the nerves.

The long and short of it is I need a root canal done in the near term. Given the alternative I had imagined for myself, I’ll gladly take the root canal.

Our bodies are constantly sending us messages about what is going on with them. Sometimes those messages are pretty simple. One day last week I woke up with a stiff back. I had been emptying a room and washing walls the day before in preparation for a painting project. I took a couple of aspirin, did a little stretching and was soon fit enough to do the planned painting.

But other times those messages are more serious. I have known folks who could not walk by an in-store blood pressure machine. But when the readings were high they always had an excuse: the machines were not maintained properly and were therefore inaccurate; they felt fine; they were nervous; they had just eaten something salty. The result was they never reported their suspicions to the doctor until something landed them in a hospital with a heart attack, a stroke, or kidney failure.

I am not saying you should report every hangnail to your doctor. I am saying that listening to your body is important. I am saying that an annual physical is important. I am saying that sharing any unusual changes your body has had since your last appointment is important.

Doctors are only as good as the information they have to work from. Part of that information they need they get in medical school. Part of that information comes from the tests they have done and from their observations of your body. But some of that information also has to come from your mouth based on your observations of your own body. No one knows that body better than you do.

Even with the best information, doctors are still going to be wrong some of the time. But if patients don’t hold up their end of the information bargain, the chance of those mistakes increases dramatically.

“As long as we have each other, we can do anything.”

I don’t know which of us first said that. I do know that whenever one of us encountered something difficult, the other soon either put this in a card or said it.

Early in our marriage, Jane drew a sketch with two swans facing each other and cut out the shapes. One was clearly masculine. One had her long eyelashes. At the bottom she had written out “Hubby, as long as we have each other, we can do anything. I love you.”

That little cutout has been at the base of the mirror on the dresser in the bedroom for years. It moved with us from our first apartment when we moved in here. The paper is brittle, but it still spoke to both of us.

Today I had to take the mirror off the back of the dresser to move it into the bedroom at the back of the house that will now be my bedroom. We had planned to move into that bedroom after we retired so the sun would no longer wake us in the morning. It had seemed a good plan when we made it several years ago–and it seems a good one now as well.

In clearing off the mirror, I discovered that the female swan had lost her head–at some point in the last couple of months the paper had cracked, and when I started to move the mirror, the head fell onto the top of the dresser. It was a brutal reminder that physically we are no longer together.

But I felt thereafter that she was here in spirit today. I had expected getting the mirror back on the dresser was going to be difficult. The whole arrangement is top-heavy, and I had this vision of the whole thing toppling over and breaking. But in the event, after a couple of false starts, the thing went together with a minimum of difficulty. It felt as though she were helping hold the thing in place.

There were a couple other tricky pieces of re-assembly to be done this afternoon. They, too, refused to be difficult. In each case, I found an easy work-around with a minimum of effort.

“As long as we have each other, we can do anything.”

I set the swans carefully aside. I will fashion a piece of tape later to put the head back on with. The whole array will return to that spot in the bottom center of the mirror.  It will always remind me what we accomplished together–and what we still have to accomplish.

Honey, as long as we have each other, we can do anything. I love you.

We live in a world of illusion.

The internet and our mobile devices convince us we are in touch with each other at all times. This is not true. I can read what my 400+ friends are doing on Facebook. I can Skype with people half a world away. And email usually brings a response to a letter far faster than the US Mail ever could.

But I cannot participate in those friends lives. I cannot truly hug my former students in Korea, Southeast  Asia, Afghanistan, or England even if I can see their faces. And like the mail that clogs my physical mailbox every day, the vast majority of my email consists of the kind of junk mail the US Postal Service would ban. The personal notes I get are generally terse bits of a few lines–and are generally devoid of anything personal.

We also believe that we have nearly instant access to every conceivable bit of information. Many believe that whatever they find on the internet is as true as what is in the newspapers–that it has been relentlessly edited and fact-checked by people who know what they are doing. The truth is that the vast majority of so-called news on the internet has been vetted by no one and consists mainly of opinion and supposition.

Even I get  caught up in these illusions sometimes–for all that I tell myself I should  know better. I worked as a journalist.  I have studied information theory. I know there is no way a single individual can keep up with everything. But I like to think that in certain areas I am on top of things.

On Friday, I had a conference call with some people in the development office at Dana-Farber. The Walking with Jane Dybowski Fund for NEC page on their website went live Thursday afternoon. They are not far away from launching a new NET/CS website. And I had asked them to try to figure out how much Dana-Farber had raised last year for NET/CS research–and while they had some numbers–far more than I expected–they still had some research to do.

They also told me they had discovered a group called New England Carcinoid Connection. They are a group of 100 individuals–medical professionals, patients, caregivers–who had started meeting in 2006. They even have a website.

And I had never heard of them before.

I like to think I am staying pretty up to date on all things NET related. But somehow a group of 100 people in my own backyard escaped me. I cannot tell you how dumb I feel. But the people at Dana-Farber didn’t know much either. They are having a conference call with the group on Monday to see if what Dana-Farber is doing is something NECC wants to get involved with.

I was interviewed today about why I am doing what I am doing. One of the things I said was that ignorance had killed my wife as much as the cancer had–and that I was determined to end that ignorance.

But sometimes we have so much information that the sheer quantity of it makes us ignorant.

Neuroendocrine cancer kills.

I know this because it killed my wife.

I want the day to come when this disease will not kill—when it will become a manageable annoyance at worst—and easily detected and cured at best.

Neuroendocrine cancer kills because of our ignorance.

We don’t know to look for it.

Because young doctors are trained to look for horses when they hear hoofbeats—and not zebras—and most doctors see this as a rare disease, most primary care doctors don’t know much about it. It is very hard to detect something you are not looking for.

This is further complicated because, depending on where the tumor is and what hormone it is secreting, it can look like lots of other things: IBS, anxiety, heart disease, asthma, insomnia, low blood pressure, pancreatic cancer, prostate cancer, lung cancer, just to name a few.

We don’t know how to look for it even if we suspect it.

A normal CAT scan or ultrasound will not reveal a neuroendocrine tumor (NET) to any but the most practiced eye. The primary tumor rarely gets bigger than a lentil—and shows up on a normal scan just the opposite of the way a normal tumor does. An OctreoScan will light the tumors up like a Christmas tree, but you have to know to order it.

An upper GI or colonoscopy will rarely detect an NET because even those that form in the gut usually form on the outside of the intestines and colon—not the insides.

Finally, there are few widely available bodily fluids tests that can detect neuroendocrine tumors—and none that will detect all the different types.

We don’t know how to cure it if we don’t find it early.

If we discover this cancer early—very early—surgery can offer a cure. But most cases are not found that early. Then surgery, drugs and one form of radiation can slow the progress of the disease and ease the symptoms—but there is no cure.

Walking with Jane

My wife Jane and I discovered all of this the hard way. She had IBS for 30 years; she was diagnosed with anxiety; she was told her swollen feet were because she was on her feet all day. While her doctors chased horses, a zebra was kicking her to death.

I can’t blame any of her doctors: they were doing what they were trained to do.

I can’t blame the medical establishment: we diagnose so few cases each year that it looks like a zebra to them.

But this might not be a zebra at all—we are finding more and more cases every year–and one study says as much as one percent of all Americans may have a neuroendocrine tumor.

My wife swore she would beat this disease. The only way she could do that was to die and take it with her.

We want future NET patients to have other options.

You can help.

The Dana-Farber Cancer Institute has established the Walking with Jane Dybowski Fund for Neuroendocrine Cancer. The money raised will go to educate both doctors and the general public about this disease and help fund the research that will give us the tools we need to help end his disease.

Please help.

Spider Robinson is a man whose works have had an outsized influence on many people’s lives.

I first encountered his stories in Analog when I was but a young lad. I had read Gandhi, Sartre, Martin Luther King, and the Bible. I had read the Upanishads and the Bhagavad Gita. I could recite whole sections of the Tao and could rattle off the Pillars and the Noble Truths of Buddhism. I knew Shakespeare and Donne and Chaucer.

But Spider’s stories made me cry. They made me think. They got me to understand the real application of what the wise had said and written and thought. His stories were parables based on a single brilliant concept all those great writers, philosophers, and religious figures understood but never quite verbalized so succinctly: Shared pain is diminished; shared joy is multiplied.

The central figure in many of his stories is a bartender named Callahan who owns a bar. Every drink is a dollar–and that dollar is refunded to you if you return the glass it came in. Very few glasses are returned. Instead, they become victims of  toasts–the tradition being that any worthy toast should end in the glass crashing into the fireplace.

But the narrator is not Callahan. That task falls on Jake, a man who has lost his whole family to his failed brake job. Once a year, on the anniversary of their death, he makes a toast to them–and to his new family: the regulars at Callahan’s.

When I began advising high school newspapers back in the early ’80s, I was looking for a way to explain what it was I thought a newspaper was supposed to do. The credo of Callahan’s became the credo of all the publications I worked with. It was how we viewed the publication–but it was also how we treated each other. My journalism students and Jane’s science students became the children we knew we would never have–they became family for Jane and for me.

In May of 2010, just as Jane was beginning the long dive into NET/CS, Spider’s wife Jeanne died from a “rare” and “aggressive” bile duct cancer. Given what he had written about her over the years, I know theirs was a profound and deep love that broadened them both. She was a dancer and choreographer who had coauthored a series of books with her husband.

The couple has a single offspring–a daughter–who delivered her first child shortly before Jeanne died. I remember when the daughter was born, Spider wrote a piece that ended with him talking about how he viewed her–that she was a connection to both the future and the past and that, at last, he understood the patience and care his parents had given him.

Tonight I received a post from an old friend whose admiration for Spider is no less than my own. Spider’s daughter has been diagnosed with Stage IV metastatic breast cancer. Despite its advanced stage, her doctors say her prognosis is good. But Stage IV of any cancer means the patient is in deep water.

Spider’s daughter faces a difficult road.

Spider’s already difficult road is more difficult tonight as he faces the potential loss of his daughter while still dealing with the loss of his wife.

A fund has been set up to help with Terri’s expenses. For those of you on the South Coast, the fundraiser is local on March 2 in Dartmouth, MA. The link will give you the details.

But even if you can’t make a donation, send them both your positive thoughts and positive energies. Say a prayer for them, if that is your way.

There is great pain here that needs to be diminished. Let us share that pain so that theirs is lessened.