It occurred to me this morning that in preparation for the colonoscopy I have later today that I have given myself a small–and I mean very small–taste of what it is like to have an advanced case of Carcinoid Syndrome.

Since yesterday afternoon I have had constant diarrhea as the laxatives set in to cleanse my bowel to get ready for the test. I am dehydrated. I did not sleep well. And likely in the middle of writing this I will need to get up and make another dash to the bathroom. I have not been keeping track, but I would guess I have had at least eight bowel movements in the last 16 hours.

It is uncomfortable, to say the least.

Jane faced day after day of this. All carcinoid patients do. But the dehydration, diarrhea, and sleeplessness are just the tip of the iceberg.

Jane was giving herself four injections a day. Her legs were so swollen it was hard to bend her knees. Getting up and down stairs–once a thoughtless maneuver–became increasingly a long climb up a steep mountain.

While I tossed and turned last night, Jane spent many nights staring hopelessly at the ceiling, listening to the radio on her headphones, waiting for sleep that would never come.

I know that soon I will be able to get out of the house and away from the bathroom. But for Jane, the world kept shrinking: from the house and yard, to the house, to the upstairs, to her hospital room, to her bed in that hospital room. At the end she had so little strength she could no longer move her head.

Today reminds me how important it is that we do everything we can to find a cure for this disease as quickly as we can. There are too many people facing what Jane faced.

They need our financial support. They need our political support. But most of all, they need our emotional and spiritual support.

I have a colonoscopy tomorrow.

I am not having it done because there is anything wrong or because of anything anyone is worried about. I have simply reached that age where one is supposed to have some kinds of tests done periodically. I am a little overdue, actually. The doctor started making noises about this a couple of years ago. My focus at the time was on Jane’s health–and since the test was routine I saw no harm in holding off on it.

But subconsciously I may have been avoiding the test. I had one done a dozen years ago. It was not a pleasant experience.

Despite the lack of symptoms–despite the fact the test is just routine–I am still a little on edge today. And it isn’t merely the “cleansing” of the bowel in preparation that has me nerved up. There are so many cancers that hide so well that we do not know they are there until they are a serious problem. That was the way it was with Jane’s NET.

I remember a story Jane told me about the days when she was a lab technician in an area hospital. One day this guy came in for routine blood work. What she saw when she looked under the microscope was stunning. The blood cells were all wrong. The man was dying. And he had had no clue.

We all have stories like that: the person who discovers they have some fatal illness that has come out of nowhere. We have all heard the stories about people getting a clean bill of health and dropping dead of a heart attack in the parking lot not ten minutes later.

Some people avoid going to the doctor on the theory that as long as they don’t know there is anything wrong they will continue to be OK. Other people go to the doctor every time they sneeze. I’m not sure I buy either theory.

Medicine is currently an inexact science. We don’t have the means to detect every disease–let alone cure them all. It is a work in progress. A generation ago nearly any cancer diagnosis was a death sentence. Today, some still are.

But we are making progress. What we have learned about NET and CS in the last year will make a huge difference in the life expectancies of many patients. But we are still very much in the dark. We have nothing yet that looks like a cure for those with advanced forms of the disease. Only when it is caught really early do we have a shot at eradicating it in a patient. And catching it that early really only happens by accident at this stage.

Every six months they check me for skin cancer. Every six months they check my cholesterol. Every year they do a full blood panel to check my pancreas, my liver, my kidneys and whatever other organs they can monitor that way. Every year I get a full physical to make sure everything else is working as it should. Every few years they do a stress test on my heart. Every few years now they will do a colonoscopy.

Will they absolutely catch everything before it becomes an issue? No. But it will give them–and me–a fighting chance.

“If you don’t have your health,” my grandfather used to say to me, “you have nothing.”

Today is Martin Luther King Day and Facebook is flooded with quotes from Dr. King. He was one of the great heroes of my childhood–and his life and death shaped the young man I became. Each year I watch the “I have a Dream” speech from the 1963 March on Washington. His assassination my sophomore year of high school began a chain of thought that moved me over the year that followed from a very conservative world view to one that was–and remains–progressive.

The years Jane and I spent together also had a profound effect on my way of looking at the world. And in the wake of her death her life has shaped nearly all I have done since. We changed each others lives in many ways but in the areas where we were similar we magnified those traits.

And at the root of both our lives were the ideals of compassion and love . You can’t stay in the teaching profession very long without a substantial measure of those two things. Jane had more of it than I did. Even in the face of death she worried about the students she should have had her last year but didn’t. I am not sure I could have done the same.

I am thankful for the care and the compassion everyone showed to us over those last months. I am thankful for the doctors and the nurses and our colleagues and our students and our friends. And I am thankful that over the entire course of that last month the subject of money only came up twice–and then only in the context of bureaucratic nonsense that was quickly disposed of by the people in charge. We had the kind of insurance that most Americans only dream of. We paid through the nose for it, but we had it. We had it because it was something our union fought for and our administrators accepted as the right thing to do.

Too often I read about people in similar situations who do have to worry about the financial situation that a serious illness brings on in the absence of real insurance–there are plans I have seen that are as fraudulent as any sub-prime mortgage, but if it is all you can get, you settle for it because it is–at least on paper–better than nothing. I have read about–and know–people who delay going to the doctor because they cannot afford the visit. And when they do finally get to the doctor the disease has often progressed to the stage it requires far more expensive treatment than it would have if it had been caught early.

One of my students sent me a note this morning: “Healthcare in Western civilizations should be referred to as sick care.” She is right–but much of that is because the average person cannot afford anything else. Preventive medicine would cost us all far less in the long run.

Dr. King had a take on this as well: “Of all the forms of inequality, injustice in health care is the most shocking and inhumane.”

If you don’t have your health, you have nothing. And if you do not have access to affordable health care…

I have tried very hard to keep my personal political views off this site. Cancer has no respect for political party or ideology. It attacks independents, Democrats, and Republicans, communists, fascists, socialists, anarchists, and believers in democracy with equal vengeance.

I have also tried very hard to keep my religious beliefs off this site. Cancer has no respect for religious beliefs. It attacks Christians, Jews, Muslims, Buddhists, Taoists, Hindus, and even Satanists and Atheists with equal fervor–and with the same results.

Cancer is an equal opportunity destroyer no matter what you believe. It ignores matters of race, ethnicity, politics, gender and sexual orientation. In its eyes, we are all equal. Oh, some cancers may be more frequent in some groups than others, but the bottom line is, we all face cancers. And in the face of that reality, I’d like to believe we can all come together against the common foe regardless of our differences elsewhere.

I have failed in my efforts to avoid politics and religion here the last few days. I talked about religion because I decided that, in the interest of full disclosure, people should know the philosophical leanings of anyone who is trying to get them to take action on a particular issue. I am not interested in anyone’s particular professed religious or philosophical beliefs. The mythos any one of us believes is far less important than the actual actions those stories prompt us to undertake.

If those stories prompt you to beat up women or enslave people of another religion–or even your own–then you and I have little to talk about. Chances are the only time cancer will interest you is when you or one of your children has it. If, on the other hand, your faith prompts you to acts of compassion and true love–caritas, in Latin–then what name you put on your belief system matters not a jot to me: you are my brothers and sisters. Cancer will matter to you whether you have it or not–just as anyone you see who is hurting will matter to you.

I talked about politics yesterday because Sunny’s post brought back to me memories of other folks who faced similar issues in the 1970s and a note I got late last year from an old friend detailing her financial struggles in the face of her own health issues. The reality is that those issues have been with us for a long time–and for largely political reasons we have done nothing to resolve them.

The political reality is that when the federal government begins cutting the budget–which it will have to do whether we raise taxes or not–funding for cancer research is likely going to go under the knife. Some research will not be cut because it would be political suicide to do so: breast cancer, prostate cancer, and probably colon, pancreatic, and lung cancer have that kind of political pull. But those without a major constituency will be subjected to cost-benefit analysis and chopped without mercy.

In 1968, carcinoid cancer was cut from the federal cancer research budget. They signed Jane’s death warrant that day–as well as thousands of others. Jane was 13 then. How many 13-year-olds will we unknowingly condemn to death this time?

Even in this community, politics matters.

I’ve never been materially wealthy. I worked my way through college in a series of jobs that helped pay the rent and my tuition. My family made too much money for need-based scholarships, but too little to put six kids through college.

One of my first jobs was at what is now Brigham & Women’s Hospital. I worked 30+ hours a week in out-patient billing. Each night–and all through the day on Saturday–I sat at a typewriter and filled out the forms that would bring the hospital money from Medicare and co-insurers for patients’ bills. Eventually they put two of us to work developing a system to pay bills for the elderly.

We looked for programs that would pick up the tab for what Medicare did not pay–twenty percent of every bill. After we tried everything we could think of, we would write off what was left of the balance. It amounted to hundreds of thousands of dollars, but we knew there was no point to billing it to the patient most of the time.

Part of the reason they started the program was what happened on a Saturday morning. This woman came into the office screaming. The hospital had sent her father, a heart attack victim, a bill for $25,000. “Are you trying to kill him? He doesn’t have that kind of money. Nobody does.”

That story came back to me as I was reading two NET patients’ blogs earlier today. Sunny Carney is getting ready to head to Europe for PRRT therapy. She will have to pay for this herself because, while the treatment is standard practice in Europe, it is only now beginning trials in the US. Her situation was further complicated when her insurance company decided not to pay for a treatment she had that they had previously approved.

And it was underlined by a sentence in Lindsey Miller’s blog where she talked about her relationship with her insurance company.

Last week Mitt Romney talked about wanting people to be able to fire their insurance companies when they did not like them. That the only way most people in America can afford decent health insurance is by getting into a group at their place of employment where they have no real choice appears not to have occurred to anyone. Fire your insurance company and you will be on your own. And without Obama’s much-maligned healthcare law, pre-existing conditions would not be covered if you did

change companies.

People want us to believe we have the best health care system in the world. According to the New England Journal of Medicine, the US spends the most per capita in the world on health care. We rank 39th in infant mortality, 36th for life expectancy, 43rd for adult female mortality, 42nd for adult male mortality. We trail such economic powerhouses as Chile, Costa Rica, and Morocco.

And if you want the latest effective treatment of NET and Carcinoid Syndrome, you’ll need to go to Europe–and pay your own way.

I won’t pretend I have a solution to this. I only have two observations: (1) What we are doing is not working; (2) For at least 36 other countries, single-payer seems to work better than what we are doing.

After Jane died, someone gave me a copy of a book called Why Bad Things Happen To Good People. I had heard of the book but had never read it, so I opened it up and started reading. The author was a minister who cited scripture trying to explain the awful things that happen to people as part of some divine plan.

Maybe those events are part of some plan for the greater good somewhere, but it brings little solace to those to whom the incredibly bad happens. I was reading the book on a plane to visit my family out west. Had I been reading it at home I would have thrown it across the room and screamed my lungs out. Right after Jane died and I had talked to her father and sister,  I called my father. We had lost my mother nine months before to Alzheimer’s. He said to me, “And now you know there really is nothing anyone can say to you that is going to make this any better.”

There were two books I found useful in those days. One was a book a friend, Beverly Foote, had written about Lent called A Journey of the Heart: Meditations. It had nothing to do with dealing with death in a traditional sense, but it gave me an anchor in that first month and a quarter because I felt I really was alone in the wilderness.

The second I happened upon in a book store during one of those desperate days when the silence drove me out of the house and convinced me to do things I would not normally do–like look at the self-help rack in a book store. Martha Whitmore Hickman lost her daughter in an accident. Her book, Healing After Loss, did not try to explain why bad things happen to people. She had been where I was and knew that was not what people in grief need.

This week one of my favorite students gave birth to her first child. I read the first bit of the birth announcement with great joy. The baby weighed in at a healthy eight pounds four ounces. But the next part set off alarm bells in my head: “We’re asking everyone to keep her in your prayers.”

Schizenephaly is a brain disorder/birth defect that creates clefts in the brain. Often the child does not survive birth. Depending on the extent of the damage there are developmental issues, seizures and paralysis. We do not know what causes it. We do not have a cure. Her daughter was born with it.

I don’t know what to say to my student. Like my father with me, I have no words that can truly offer solace for what she is going through. I hate the ritual words we all say at times like these because I know just how meaningless they really are–how much they can sting and burn in the mind and in the soul.

She and her daughter and her husband need our love and thoughts and prayers and energy tonight–and every night. It is all we can truly offer anyone who faces this kind of darkness.

I will make two posts today if all goes as planned. This post has to do with some thank yous and some updates on pieces run earlier. I am working on a more substantial piece for later but need to do some more research before it is ready to go.

First, a thank you to The Women’s Journals. Last month they published “Is it IBS? Or is it NET?” in the print version of their publication. This morning I got a note from them that they have put that piece on their website.

I have also put that piece in a four page pamphlet that some local doctors have been using in their offices. If you are a medical professional and interested in copies of that pamphlet, send me an email and we will get copies to you.

Second, in yesterday’s post, “Who do you love” there was a link to a YouTube video about the difference between what Jesus Christ said and what some of his followers do. That link worked fine when I tested it but seems to have broken down at some point. I have fixed that link and reposted the link above as well. It is a piece that is well worth viewing, though it has little to do directly with NET or CS.

Third, we are continuing with the work of cleaning up and renovating the site. We are continuing to work on site navigation and think we have most of that resolved. If you find things that don’t work or have suggestions for things we need to do, please let us know via email.

The store project is proving a more difficult nut to crack than we expected, but we

hope to have it up and running shortly. Thank you all for your patience.

Finally, yesterday was our biggest single day since the site opened September 2-3. Part of that was driven by yesterday’s post here, but a substantial number of people accessed other parts of the site as well. Given how slow things have been here since two days after Christmas, yesterday was a nice surprise. Thank you all.

One night when the nurses had thrown me out of Jane’s room to get some dinner, I went for a walk. People had told me about a pathway through the hospital called The Pike that ran from the new section of the hospital for a full city block before it ended in the lobby of the original building.

Jane was in a coma that night–the first of three–and I was about at the end of my rope. She had been making progress, we thought. Her heart was growing stronger. She was having no real trouble with the physical therapy regimen they had set up for her.

But overnight she had become increasingly incoherent and in the morning had slipped into a coma for reasons no one understood.

At the far end of the trip I found a man with a deep faith in God. He told me that night that Jane would be all right but that there would be a time when we would have to weigh her quality of life into the equation: that this was God’s way of getting our attention.

I was reminded of that conversation today as I was flipping through some things on Facebook. A former student had posted a video about the differences between Jesus Christ and the religions that bear his name. And that reminded me of the conversation I had with a priest who was officiating at Jane’s funeral. I had told him that Jane and I were deeply spiritual, deeply faith-filled, but not particularly religious people in the sense that we were in a church with regularity.

I thought he understood what I said.

About a month later I went to that church for a memorial mass for Jane and others in the parish who had died in the previous month. The sermon was about how one could not have faith outside the church.

The spirit calls to each of us in its own way. For some that way is through a church. For others it is through meditation or a solitary walk in the woods. For others it is through the work that is put before them.

Jane and I tried to live our faith every day of our lives. It is a faith based on love–but not love for a god or a religion. Human beings need love more than any god does. They are hurting and hungry, stuck in abusive relationships and ignorance, and suffer from want and ill-health. They are in pain. They are, all of them, our sisters and our brothers, our sons and our daughters, our mothers and our fathers.

Jane’s illness and death changed none of that. It called attention to a group of people we did not know existed, but it could not change the basic thrust of our lives. To us, it never mattered what people believed–if they truly needed help, they got it–to the extent we could give it.

Love one another, Christ said when asked what was the greatest commandment, for in it all the others are summed up.

Neither Jane nor I would argue with that.

We had a good board/captains’ meeting Saturday night. Those meetings are good for a number of reasons, not least of which is the social aspect. Now that I am no longer teaching it is way too easy to hole up in the study working on various projects on the computer.

Just as important, it gives all of us a chance to see how far things have come since we started all this stuff back in May.

Planning continues for a combined Motorcycle Poker Run and Yard Sale in Westport. We have set a tentative date for that: of June 3, the first Sunday in the month. Gail Silvia will run this as a fundraiser for our Relay for Life team in Greater Fall River.

The Kick-Off Dinner for the Greater Fall River Relay for Life is January 27 at 6 p.m. at the Notre Dame Parish Center. Tickets are $10 for adults, $5 for students, and children under 6 are free. The event has a Hollywood theme. The Event is posted on Facebook.

We have the new Walking with Jane t-shirts. The shirts are black with white lettering and, as a result, more expensive . Locally, the shirts will sell for $15 for small though extra-large. XXL and XXXL are $3 more. Shipping for the new shirts will bump the cost to $19. The shirts are available at Westport High School during Wednesday lunches and at most home varsity basketball games. All sales benefit the Walking with Jane team at the Relay For Life of Greater Fall River.

My plan is to have the store up and running by the end of the weekend. Of course every time I say that something comes up to knock that back again.

Walking with Jane teams have been created for the URI and Bridgewater State Relays. We are looking for someone at UMass-Dartmouth to run one there as well.

Caring for Carcinoid met the goal of its challenge grant. The grant generated $190,000 in donations that, with the $250,000 two-for-one match brought their total to $440,000 for the period between November 10 and December 31. Thanks to all of you who answered the call.

The theater fundraiser continues to hit snags. We just have not found a suitable play. If you have thoughts on something with a small cast and a suitable plot, let me know.

The website cleared 5000 views just after Christmas.

The Walking with Jane Dybowski Fund for NEC Research and Education at Dana-Farber Cancer Institute will have its own page on their website starting February 1. For other ways you can help the cause, please visit Ways to Help on this site. We have offered other foundations links to their fundraising pages on that page. We care less about who gets credit for raising money than we do about increasing the cash flow to fight this disease.

Dana-Farber has also established a national research center on NEC. More details on that after I meet with them later this month or next.

We are looking for people with art backgrounds to submit designs for

notecards we will use as a fundraiser later this spring. We would like the package to have 12 cards, each with a different cover design by different artists. If you are interested in designing a card, let me know.

Finally, an old friend has offered to put on an Italian dinner as a fundraiser. We plan to take him up on the offer. Stay tuned.

We continue to advance on this from several different directions. Hope you can find a way to put in your efforts somewhere. We are open to any and all suggestions.

There are some things I am really terrible at. Asking for help is one of them. I like to think I have gotten better at it in the last year, but I am not sure I am.

Yes, I seem more willing to ask for help–and I am better at accepting it when it is offered. But there is still a real level of discomfort. Jane and I were always so determined to be self-sufficient…

But the projects involved in getting NET moved to the front burner–and in trying to get the funding for research and education–are so far beyond my powers that I have to ask frequently for help.

If you read this column with any frequency you know that I asked people last week to write to the American Cancer Society’s chief medical officer, Dr. Otis Brawley, (otis.brawley@cancer.org) in support of a letter I sent to the ACS last month outlining the reasons they should increase their funding for NET/CS research.

Another way to help is to form a Walking with Jane team for your local Relay for Life. The teams serve two purposes: first, they give us a chance to raise awareness about the disease in communities outside the Greater Fall River area; and second, because the teams have the same name they send a message to the regional and national ACS folks that there are a lot of people interested in what is going on with this disease. While the money raised by these groups will go into cancer research generally, rather than into NET/CS specifically, their existence may serve as a catalyst in getting the ACS leadership more interested in funding more research in the long term.

These Walking with Jane franchises may also become the core of other fundraising efforts in the future that will be entirely directed at NET research. I will write more about that possibility as I begin to sort out the details of what those efforts could be.

Two colleges with Relays in New England are already forming Walking with Jane teams for this year. If you are at Bridgewater State University or the University of Rhode Island, you can join groups that are already starting up.

And we will not leave you out there without whatever help we can provide in getting you going. We already have a button design, a water bottle design, and two t-shirt designs. One group is putting together a ribbon design as one of their fundraisers. And depending on where you are, I can either come visit your group or do a Skype-style appearance at a meeting.

There is much to do. We need all the help we can get.