We launched this website just over six months ago.

Seven months ago I was asked to chair the Relay For Life of Greater Fall River.

We launched our Dana-Farber Marathon Walk fundraising campaign about eight months ago.

We launched our Walking with Jane Relay For Life team just about ten months ago and participated in or first relay nine months ago.

Jane died 15 months ago tomorrow. Nineteen months ago she was diagnosed with neuroendocrine cancer. Eighteen months ago we went from thinking she still had years of life ahead of her to near absolute despair when we found out how badly her heart had already been damaged.

But we drew hope from what her doctors said–and who her doctors were. If we had lived almost anywhere else there would have been no hope–no chance. And neither of us were good with no-win scenarios. Where we lived turned no chance into a fighting chance. And we did everything we could to make that fighting chance better.

I lost my mind for a little while yesterday. I know much more about NET/CS now than I did when Jane died. Sometimes that knowledge overwhelms me. There are so many things we might have done differently. But we didn’t know–no one did. We could only make decisions based on what we knew.

I have spent the last week re-potting house plants. Jane had grown an ivy plant on a heart-shaped frame. It was the one plant that died while she was in the hospital. Among the plants was a dish garden with an ivy in it. When I was ready to transplant that one I went to the basement and found the frame. It was still in the pot and the dead vine was still wrapped around it. I cut off the old vine and put the brown leaves aside for the compost heap.

I carefully wrapped the living ivy around the old frame. There was enough vine to complete one circuit. The heart is thin but it will fill in over time. There is another container with another ivy in it. Maybe I will shape another frame–shape another heart.

Yesterday, after I had raged against fate and wept my brains out again, I set up the lights and planted tomato, pepper, eggplant, and flower seeds for this year’s garden. Two weeks from now I will be ready to plant the peas and spinach. Three weeks from now I will plant lettuce.

The wind blew hard last night. When I got up this morning I discovered the mailbox had blown off its post. I went out this morning and bought the screws to put it back together.

Life, knowledge,work,  grief–any one of these things can be overwhelming. Sometimes they all build together and it seems like it is just too much. Sometimes I just want to quit and let someone else do whatever it is I am supposed to be doing.

I won’t, of course. It is not in my nature to quit or to give up. It was not in Jane’s either. So while there will be days I lose my mind, there will always be seedlings to start, plants to re-pot–and mailboxes to fix.

I am headed for Boston next Wednesday to do some lobbying for the American Cancer Society. They have three bills they have an interest in, all of which are centered on getting people to stop smoking.

I did the training for that effort yesterday. It was interesting in a number of ways–not least of which was discovering that the budget for smoking cessation programs has been cut by close to 90 percent over the last ten years. I was involved peripherally in planning for one of the state programs in the Greater  Fall River-New Bedford area back in the 1990s and it was very disappointing to discover the degree to which that effort has collapsed since.

At the end of the session I talked briefly with the person running the training about a potential fourth issue. The current legislative agenda includes a substantial increase in both the cigarette tax and the taxes on other tobacco products like cigars and chewing tobacco. Some of that revenue would be used to fund an increase in the budget for anti-smoking efforts, but the majority of the money will end up in the general fund.

Currently, the state of the art treatment for NET is a radiation treatment called PRRT which was pioneered in Europe. The treatment requires a new kind of machine–of which there are only two in the US. One is at Vanderbilt University and the other is at M.D. Anderson in Houston, Texas. The device in Texas cost about $2.5 million to build–which came from the state government in the form of a grant.

Dana-Farber wants to become a national center for NET/CS treatment and research. I think that is a noble and important goal. But it is a goal that requires they have state-of-the-art level equipment and facilities. I think the ability to do PRRT is part of being a national center for treatment and research.

My suggestion was to bring this up with legislators when I visit on Wednesday. Unfortunately, since I will be representing ACS and they have taken no official policy position on PRRT, I can’t do that. Of course I will go back to Beacon Hill later this spring to talk about this particular issue on my own. But in the meantime, I want the ACS New England Policy Board to join the effort.

I have sent some back-up material to the ACS CAN rep I spoke with yesterday and will shortly have an address to mail letters of support to. Please take a few minutes in the next day or two to draft a letter of support for this idea to the  New England policy board. I will have an address to send that to shortly and will post it here and on the Ways to Help page.

Letters to your state representative and state senator, if you live in Massachusetts, would also be a help.

My thought is that more of the money being raised by those tobacco taxes should go to cancer research and treatment. If you agree, please lend a hand.

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.