Friends, Romans, Countrymen–lend me your ears…

The Greater Fall River Relay for Life is off to a great start. We are closing in on 500 participants. We have 61 teams signed up online. We have raised over $17,000 so far.

But our Walking with Jane relay team efforts need a boost at this point. Yes, we have raised over $1,300 to this point. Yes, we have plans to raise more. But right now we have just nine team members signed up–and there is no way we can do all we have ahead of us without more help–lots more help.

There are just 96 days left to the start of Relay. Three months sounds like a long time–and I know we raised over $2,500 in barely a month last year–and close to another $1,500 at the event.

But our target is a lot bigger this year. We won the Team Spirit Award last year without even knowing it existed. It looks good with us. But if we want to keep it we need to start growing the team now. We need big fundraisers, but we also need the little fundraisers. Ten buttons here, a dozen bracelets there, a few cookies, muffins or cupcakes, some simple zebra ribbons, all can add up to serious money before it is all said and done.

Here’s what we need you to do:

If you are planning to join the Walking with Jane Relay Team, go to our Relay website and get registered. It will cost you $10. They will send me a notice that you have signed up.

Then participate in the first Relay Team Challenge. On March 24, every team member who raises $24 in that 24 hours will earn the team a chance to win a Midnight Pizza Party at Relay Friday night. No standing in line to get pizza or drinks for the winning team. It will all be delivered to our site.

And of course doing well in the challenge means increasing our chances of keeping the Spirit Cup.

How can you raise $24 in that 24 hours? I have WWJ buttons, bracelets, water bottles, t-shirts, tote bags, luminaria bags. Just let me know where you want them and I will get them there. Or you can make simple zebra or blue ribbons and sell them for fifty cents or a dollar or a donation. I will see what ribbon I can find this week. If someone has an idea for a group project that day, I am all ears.

My personal plan that day is to ring door bells in the neighborhood that day and see what I can get. But I am game for anything anyone else wants to try.

I will have more details about the logistics of all this after Tuesday night’s captains’ meeting at Somerset. In the meantime, get registered online so we can hit the ground running.

And if you live away and can’t relay with us, join a team in your area–or form a WWJ team of your own. Or make a donation to our team as we raise awareness about NET and raise money to fight all cancers.

I went to see a doctor this morning for a follow-up on the problem with my larynx. I had been fighting a problem with hoarseness most of the fall. My primary care guy sent me to a specialist who put me on some medication and sent me to a voice therapist. She gave me some exercises to strengthen my vocal chords–which I have been trying to be faithful about doing for the last couple of months.

The appointment went well. I can stop taking the medication but need to keep doing the exercises twice a day until I have fully strengthened the voice again. I will likely keep doing them indefinitely because I need to keep my ability to speak in front of an audience without a microphone–as a point of pride if for no other reason.

After that I went to get a haircut. Then–let’s just say I engaged in a lot of avoidance behaviors. I just did not want to come home. I had three projects to do here today, but they all had emotional content I did not want to deal with.

The problem really started yesterday afternoon. I did an interview with someone who works for Dana-Farber’s donor magazine about the Walking with Jane Dybowski Fund for Neuroendocrine Cancer. He asked me about the inspiration for the fund and the other parts of this operation, which took me back to how Jane and I met and our life together and the slow development of the symptoms that eventually led us to Dana-Farber and Brigham & Women’s and the heart surgery and the hope and the despair and her death and my going on with the work we had set for ourselves.

I keep expecting that going back through all that will get easier over time. I am a fool to think so. I don’t recite the story–I relive it. And in reliving it I feel everything all over again the way I felt it in those days. For a time immediately afterward I am as numb as I was the day after Jane died. To the outside world I seem to function well enough–but the outside world is not living in my brain.

I find myself wandering the house aimlessly. I look at the clock and hours have passed in what seems like minutes. There are rooms I cannot enter and closets and drawers I cannot open. I want to be out where there are people, but I don’t want to talk with them or interact with them at more than a superficial level. And I want to drive the people who are close to me away from me as far as possible.

I don’t want to ever be in a position where I can be hurt like this again.

Gradually, I come back to myself. The pain eases. I can deal with the house again. I can open the drawers and the closets again–I still cannot bring myself to go through them, but I know the day will come.

People want to believe that grief is a one year thing–that on the one year anniversary, someone waves a magic wand and the mourner is wholly healed. It does not work that way.

I am better than I was a year ago. That has to be enough for now.

I can’t say Jane and I were great college basketball fans, but we read enough and watched enough to have a clue. We would watch the league tournaments, watch selection Sunday, fill out the bracket. Some years we would do unbelievably well. Other years we did not get out of the first round with anything that looked viable.

Those years we would sit down after the first weekend and fill out a new bracket. We were less interested in being right than in having teams to cheer for. We would have no real interest in Wichita vs. Virginia Commonwealth without that little boost. We would often take the 12 over the five and the nine over the eight. We liked the Gonzagas and the Murray States and the Creightons before most people recognized those programs were real.

Last year I did not fill out a bracket. I barely watched a game. I’m not sure I even watched the final. I’m not sure I knew UConn had won the tournament before someone said it today.

I didn’t fill out a bracket this year either. I thought about printing one out this morning, but my heart was not entirely in it. I watched Marquette win, caught the few minutes of the Syracuse’s attempt to become the first number one seed knocked off by a 16 that CBS gave us. And I tuned in midway through the Murray State win.

But the world remains a radically different place for me. Much of what I once enjoyed holds no interest for me. And I really do need to find ways to relax and put my mind in neutral–or at least on things other than the work that needs to be done.

I saw the beginning of that last week when I got to two high school tournament games.  I screamed myself hoarse in the regional final–not that it got Westport past Cathedral in the end. And the Red Sox…

But I am not sure the old passions will ever return fully. In one of my grief groups, we talked about the “new normal.” Any encounter with death changes you. The morning after I covered my first three fatal accidents found a very different person than I had been the night before. I did not know those people.

There were lots of deaths after that. Some were people I barely knew–others were students and athletes in my classes and on my teams. John Donne talks about each death diminishing him. While those deaths did not make me less, they did change me–some very greatly.

But none of those deaths changed me anywhere near the way Jane’s did–and does. I have only recently begun to taste my food again. That is how deeply the trajectory of my life has changed. It is not just what I enjoyed doing that has changed. My vision of my life, my goals, everything is different.

Any day that I do not make some progress against this disease feels like a failure. Every day I see progress seems like a small success. But I also know there have to be breaks in there somewhere. I just have to remember to take them.

Education and politics probably should never meet. Politics, as someone once said, is the art of the possible. Education is the art of doing the impossible to make the seemingly impossible possible.

I was reminded of these two ideas today after spending a chunk of the morning and afternoon talking with the members of the state legislature in Boston about three proposals the governor has in his proposed state budget. All three deal with creating and maintaining ways to get people to either stop smoking–or never start in the first place.

The first proposal asks for a $1.25 increase in the cigarette tax and the closing of a loophole that allows non-cigarette tobacco products to be taxed at a much lower rate. This would have three positive impacts. First, whenever taxes are raised on cigarettes, a significant number of smokers decide the habit has become too expensive and quit. Studies show that health issues and their associated costs decline within a year of a person giving up smoking.

Second, by making all tobacco products significantly more expensive, it will make it more financially difficult for young people to take up the habit in the first place. While it is true that fewer young people now smoke than used to, in Massachusetts an increasing number are taking up smokeless tobacco products and pipes and cigars instead. This is, in part, due to a sophisticated marketing campaign by tobacco companies for the smokeless products among young people, but also in part because of the lower entry price to tobacco in those forms.

Finally, the tax increase would result in an additional $140 million in revenue for the cash-starved state budget. Given that federal money that has been propping up the state’s  education and other budgets the last few years is expiring as Washington deals with its own financial issues, additional money needs to be found.

But I was told again and again that the Speaker of the House has decreed there will be no tax increases in the  Commonwealth this year–that businesses and individuals cannot afford to pay out more than they already are.

Of course in the long-term, we will ignore the fact that tobacco is a known cancer causing agent and that not doing all we can to prevent cancer before it starts is far more expensive because of the healthcare costs it inevitably leads to.

The other two proposals were more warmly received–at least in principle. The first would increase funding for smoking cessation programs by $1.7 million. At one time, Massachusetts was spending $48 million a year on that–and smoking rates plunged. But funding for those programs has dropped more than 90 percent since then. Last year the Commonwealth scraped together $4.1 million for that. Given the problems in the state budget, I am not shocked by that amount, but I am dismayed. Again, we lower long-term healthcare costs every time we get someone weaned off tobacco–whether smoked or smokeless.

The second would create coverage for smoking cessation programs in health insurance policies for state workers and for those on Commonwealth Care–a health insurance policy the state is offering to cities and towns buy into to save money.

None of these programs should have been a hard sell. They will reduce healthcare costs in the long-term while the first has the added short-term effect of creating some new revenues to help with the current state budget crisis.

But in some cases, you would have thought I was asking for a Profiles in Courage level stand on principle.

I understand that there are political realities. I understand that sometimes compromises have to be made in order to reach a legislative goal. I understand that arguing with the Speaker of the House is not a good way to advance ones station in a legislative body.

But I also know beating cancer is not a job for the timid or the shy. I know that taking on the tobacco interests in this country is not a job for the timid or the shy. No war is won by being timid or being shy.

We need legislators who are neither timid nor shy.

People have very different reactions to what I write and what I do.

Yesterday, for example, I got a note about the piece I wrote that complained I was being too much of a downer. Someone suggested I need a dog.

A couple of weeks ago, someone else complained about things I do and write elsewhere–saying I focus too much on politics. People want me to relax and have more fun and not worry so much about things over which I have little control.

Some of you may want to stop reading at this point. I am about to become both political and more bitter than sweet.

In 1968, the United States government declared the budget needed to be cut. While the overall budget continued to grow, there were cuts made in a number of programs in order to increase funding for other programs and create funds for new programs. That budget was signed into law by a Republican president after being passed by a Democrat controlled House and Senate.

One of the casualties of that budget was funding for a little-known form of cancer referred to as carcinoid syndrome. It was one of a number of rare cancers and rare diseases de-funded that year.

Jane was 14.

In 1980, Ronald Reagan was elected president, promising to lower taxes and decrease federal spending. He brought the phrases “zero-based budgeting” and “cost-benefit analysis.” With virtually no money being spent by anyone on CS for the preceding dozen years–that is what happens when you are reduced to relying on charity–we were still diagnosing very few cases of neuroendocrine cancer compared to other forms of cancer. Federal funding of NET/CS research failed the cost-benefit analysis test. We invaded Grenada instead.

The Democrat controlled House and Senate gave Republican President Reagan the tax cuts he asked for, as well as the increases in military spending the president said we needed to beat the Soviet Union.

Jane was in her late 20s and experiencing the initial onslaught of the disease. She was told it was all in her head and that she had IBS and that she should go home and either tough it out or find less stressful employment. A handful of major hospitals had equipment that might have revealed the tumor developing in her appendix, but few doctors would have known to order the tests–nor that the equipment they were hearing about might see something most of them had never heard of.

The Soviet Union collapsed. Suddenly there was a peace dividend and the budget found its way into the black. The “tax and spend” Democrats took part of the surplus and started paying down the national debt. Republicans entered into a “contract with America” and won the House and Senate. With  the help of Democratic President Bill Clinton, they passed NAFTA–sending American jobs to Mexico and elsewhere–and gutted welfare programs. But the budget continued to grow.

And nowhere in that growth was there money for research into NET/CS.

Jane and I were married by then. I watched the strength of her IBS attacks increase in frequency and strength year after year. I tried to get her to see doctors, but even when I succeeded they came back to the same diagnosis she had received in 1980–and each repetition of that diagnosis made it harder to get her to go to the doctor the next time.

George W. Bush came into office in 2001, pledging to lower taxes and make government smaller and more efficient. Even before September 11, it was clear that the federal budget would continue to increase. And after September 11, the country moved to a war footing. I truly expected, though, that  taxes would at least remain where they were–if not be increased–to pay for the war effort.

Instead, we lowered taxes and took the wars in Afghanistan and Iraq off the books, creating the illusion that the deficits we were running up were actually smaller than they were. And research money for obscure cancers and diseases with a mere 10,000 cases a year being diagnosed–that were not funded at all in the best of times–were unlikely to see much action under those circumstances–not when there were infidels to kill. President Bush said the best thing Americans could do to support the war effort was shop and go away on vacation.

By the time Barack Obama was inaugurated in 2009, no amount of new research money likely would have helped Jane beyond giving her a few more months of life. The tumors were growing rapidly in her liver. The insomnia had become chronic. The stomach cramps were increasingly debilitating. The H1N1 flu in October of that year nearly killed her.

But the truth is that political decisions made when she was 14 years old–and renewed every year for the rest of her life–bear responsibility for her death–and for all the suffering that preceded it.

Those decisions were made by both Democrats and Republicans–some of them people I voted for and respected. I want to believe that they made those decisions innocently and with the best off intentions.

But the more I learn about the political decisions of the last 45 years–the more I discover about the kinds of gross manipulations both parties and their allies have been engaged in over that time period–the more difficult I find it to believe in either group’s good intentions about anything.

We had a phrase back in the 1960s and ’70s for what has happened not only with NET/CS but also with neurofibromatosis, pulmonary fibrosis, and a host of other “minor” zebras: benign neglect. It was used originally on matters of race–and from the start it dripped with irony.

For those with these diseases, that neglect has been anything but benign. Rather, it has been a virtual death sentence little mitigated by “the kindness of strangers.” There is a grave on a hilltop in Fall River that stands witness to that statement.

But for now, charity is about all we have to work with.

The weather was beautiful today. I missed a good chunk of it. I was in the middle of painting the bathroom as I continue to try to catch up with the maintenance Jane and I neglected when her health began to fail. There is nothing physically difficult about any of these things.

Emotionally is a different story.

But when I was done I went for a walk. The moment I walked out the door I knew I was over-dressed.. Even after I left my sweater behind I quickly overheated. It hardly seemed like March 12 in New England–more like March 12 in northern Florida.

I met two dogs in my travels. One of the neighbors has a new yellow lab puppy. He played watchdog, barking at every person who passed by his fence. Jane would have gone over to talk with him. She had a way with dogs.

I encountered a female pit bull as well. She was well-behaved until I stopped to talk with her owners. Then she got a bit protective and tried to run me off. I felt Jane at my shoulder then and the dog stopped and became friendly. I let her sniff my fingers and gave her head a brief stroke. She headed back into her yard before turning to bark at me again as I left.

People were out running and riding their bikes. I saw a young couple on a motorcycle who were wearing t-shirts. People had the windows down on their cars–and I heard a wide range of music erupting from them as they passed by. Jane and I would dance in the car when someone pulled up with their music so loud they begged everyone on the road to share it with them.

When I got home I took a short tour of the yard–as we always did. The winds this weekend had knocked down a lot of twigs and branches. Some of the mums I wintered over have begun to sprout and the buds on some of the trees are beginning to swell. Some day this week I will have to cut back the Rose-of-Sharon out by the fence. I wonder if I will find another hummingbird nest there this year.

I opened the windows and the slider after I came in–both to air out the paint fumes and invite the sounds of the neighborhood in. The birds were singing and some of the neighborhood children were doing what neighborhood children do on the first nice day of spring. There was a kickball game in progress across the street–and a game of tag or something a few doors down that was creating the high-pitched squeals that only emerge from the lungs of small, excited children.

Jane would have loved today. We would have let the bathroom wait another day. We would have walked, talked to the dogs, and listened to the birds and the children. Tonight, we would have watched some TV or picked out a movie and snuggled on the couch.

I suggest you go do that with the person you love tonight. I suggest the two of you find some time to walk outside and enjoy this weather tomorrow–and the dogs and the birds and the children.

You never know how many walks–how many beautiful days–you have left.

Jane and I used to joke about what a creature of habit I am. Every weekday morning we were home for 21 years I had a bowl of Cheerios and a glass of V8. Weekends we would go out for bagels. Her order always varied. Mine was nearly always the same–so much so that sometimes my bagels were already being toasted as we walked through the door.

When we were working, I made breakfast while she showered. I made sure she had something different every morning, but I had a rotation for every week. She eventually figured out that there was a reason I did everything the same every morning. The truth is that before I have been awake for a couple of hours my brain does not function very well. My habits evolved out of needing to remember to shave every morning and brush my teeth.

By 9 a.m. the fog had cleared from my brain and I could function as a somewhat normal human being. Before that, I could not be trusted to remember much of what was said to me.

I find it hard to go out for bagels on the weekend now. When my niece comes in to visit–or one of my brothers–I take them there. And sometimes I find that if I go there at an odd hour I can handle it–so I do. Eventually, I hope I will be able to go there more regularly. It will be a sign that I am making some progress.

Last night I went to see The Mourner’s Bench at Trinity Rep in Providence. The theater company commissioned the play for this year’s season so I knew little about it. But the title was clue enough that I was in for an emotional evening. Just a week ago I had seen another new play there–Love Alone–that dealt with the aftermath of a sudden and unexpected death. That play left me emotionally wrung out. But last night–last night, I was not sure when the curtain fell how I was going to get myself home. I had been fighting off tears from the start, but the third act killed me. I sat in the chair weeping as Anne Scurria recited so many of the same lines Jane had said to me the day before she went into the hospital.

When the lights came up, I could not move. It was as though the last act had been written for me. And as I reflect back on Love Alone —it seemed it, too, had been written to move me forward.

My weekend breakfast habit has become a poached egg on toast. It is a psychological comfort food for me. After I had come through an illness as a child, the first breakfast my mother would give us was a poached egg. Jane had seen a piece on how real chefs made them and insisted on trying it. Hers were more perfect than mine, but every time I make them I think of her–and I think of my mother–who died ten months before Jane.

I have wondered a lot lately whether or not I am doing the right things. I feel like everything is stalled and that what I am doing is not making any real difference. This morning I got an answer.

I scooped the egg out of the pan as I normally do–and as usual left part of the white behind. I scooped out that to add to the egg. The piece came out in the shape of a heart.

Thank you. I love you, too.

I am always stunned by the strength of the emotions I feel when I stand at Jane’s grave. I expect the tears and the sadness. I have come to accept–though I do not completely understand–the flashes of anger. Sometimes there is this overwhelming feeling of failure. Other times, I feel this powerful sense of understanding.

It is always quiet in the cemetery. Sometimes there is a military funeral off in the distance but the bugle call only adds to the silence. I have watched graves being dug–but somehow the sound does not break the silence. It is a place where all the noise seems to have been sucked out of the world–a silent vacuum filled with emotion and vision, but not sound.

When we visited her mother’s grave, Jane talked about how her mother said it is always cold there. Fifteen months into this solitary journey, I know the truth of that statement. Even in the heat of summer there is a chill that runs through the air and the ground. I see my lover as she was–sometimes frozen in place as the young woman I married–sometimes frozen in the form of our last trip together–sometimes in the form of the last days in the hospital–sometimes in the form of the woman in the casket–sometimes in the form of the woman in my arms as we snuggled on the couch.

There is an etiquette among the visitors. We try not to intrude on each other’s grief. But there is also a sense of shared understanding. We water each other’s flowers, nod at each other when we pass by–even sometimes share a word or two. But we are each locked in our own grief. We each know the burden the other carries and are careful not to add to it. We lighten it when we can–but it is a solitary place.

I remember learning how to die on stage. The director talked about how much energy it takes to die–that death consumes all of the body’s reserves–and still hungers for more. But grief devours energy as well–more slowly, perhaps, but with an insatiable hunger that I do not have words to describe. I fight sleep as long as I can–but once asleep my body resists all calls to awaken. In the morning, I struggle to get out of bed.

Every day, people join the dead. Every day, people join the grieving. Women become widows, men widowers, children orphans. There is no word for parents who lose children. What a terrible thing it must be to have a loss we cannot put a name to.

People die in a multitude of ways:  accidents, drownings, heart attacks, strokes, diseases, cancers. Each death creates a coin of suffering: on one side are the dead, on the other, the mourners.

I know we all die. But, to quote John Donne, “Every man’s death diminishes me.” And some diminish us more than others. The loss of our parent, our child, our spouse diminishes us in a greater way than other deaths. And when that death might have been prevented–when it comes too soon…

People sometimes tell me they are amazed at what I am doing to fight cancer in general–and Jane’s cancer in particular. There is nothing amazing about it. This loss, in this way, is painful. I cannot stop my pain–but I may be able to prevent–or delay–yours.

We  are all our brothers’ and sisters’ keepers.

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.