August 26, 2009 - The Passion of His Life

The death of Senator Edward Kennedy is a milestone for our nation. He was, and remains, a controversial figure – flawed like all of us, but undeniably larger than life. Not even his opponents can dispute the impact he has had in advancing a variety of populist causes.

Among Ted Kennedy’s most enduring legacies is his struggle for affordable health care for all Americans. In this video clip, he calls it “the passion of my life,” then explains some of the personal reasons why:



I can relate to many of the stories he tells. Even though I’m fortunate enough to have good medical insurance, my own experience as a cancer survivor has acquainted me with neighbors for whom illness threatens not only physical infirmity and death, but also financial ruin. This is deeply wrong. It is even more deeply wrong that wealthy corporations continue to squeeze vast profits out of this broken system. Medical and insurance lobbyists exercise such power on Capitol Hill that even the voice of the overwhelming majority of the American public may not ultimately be heeded.

The dream of universal health care is not yet achieved. Strident voices are disrupting public meetings, in ways that intimidate fair-minded people and undermine democracy.

I resonate deeply with these words of Jim Wallis, in a tribute to the Senator published today:

“On the occasion of his death, I pray that God may now move us as a nation to address the greatest commitment of Sen. Kennedy's life - the need for a comprehensive reform of the health-care system in America - as a deeply moral issue and one that calls forth the very best that is within us. May we honor the life and death of Sen. Edward Kennedy by laying aside the rancor, lies, fear, and even hate that has come to dominate the health-care debate in America this summer, and regain our moral compass by recovering the moral core of this debate: that too many Americans are hurting and suffering in a broken and highly inequitable health-care system, and that it is our moral obligation to repair and reform it – now.”

This cause was the passion of Ted’s life. May it become the passion of ours as well

August 25, 2009 - Be Your Own Advocate

Here’s a rather shocking statistic from a recent study: 25% of abnormal medical test results never get reported to the patient.

Part of this is due to the negligence of certain doctors and their staffs – although, in some cases, it has to do with the national shortage of primary-care physicians. Often, it’s the primary-care physician who wrangles the test results and reports them to the patient. If someone’s getting their basic care from a doc-in-the-box or an emergency room, the lab or specialist may not have a clear idea of the chain of command. (In case you don’t know, a “doc-in-the-box” is a nickname for a walk-in clinic, at least here in New Jersey.)

Whatever the reason, this number is way too high.

Actually, something like that happened to me with my colonoscopy several years ago (results were normal in that case). I didn’t hear from the gastroenterologist, and I simply told myself, "I guess no news is good news." On a subsequent visit to Dr. Cheli (my primary-care doc) a few months later, I asked him if he’d heard the results of my 50th-birthday colonoscopy. He hadn’t, and had one of his nurses call back, then and there, to the office of the gastro guy. Then, I overheard him talking on the phone to one of that doctor’s office staff, chewing them out for not sending the results to either of us. Good thing there was no abnormality – although his office evidently didn’t have a fail-safe procedure in place for checking back in the event of results that never came.

All of this just goes to show us patient types: in this crazy, dysfunctional medical system, we’ve got to be our own advocates. If we don’t look out for our own interests, it’s very possible no one else will.

A word to the wise...

So, what about the rest of you? Have any of you had difficulties with test results not getting reported to either you or your primary-care doc? Sound off in a comment, below...

August 23, 2009 - That's a Lot of "I Dos"

This afternoon, I officiated at a wedding. As I was recording the details afterwards in my pastoral record book, I happened to notice that this wedding was the 250th I’ve performed, since my ordination in 1983.

That’s a lot of “I dos.” It’s hard to believe I’ve been through the premarital counseling process with so many couples.

Maybe I should have offered the couple a prize. You know, something like: "Congratulations! As the one millionth customer to walk through the doors of this department store, you’re the lucky recipient of a shopping spree!" Don’t know what I’d offer a newly married couple, though... Somehow, I don’t think a coupon for a complimentary marriage counseling session would be much appreciated (and would be no bargain, anyway, since I don’t charge for marriage counseling).

I like doing weddings. They’re such joyous occasions. Every couple is so different, yet also so similar in their hopes and aspirations. As I scan down the list of names in my record book, I can still picture a great many of them. Some I haven’t seen since their wedding day (often because they were in typical young-adult transition, and moved elsewhere). Others are still right here in this congregation. For some of those couples, I’ve already had their kids in confirmation class (no weddings, yet, of any of their kids – I haven’t been here quite long enough for that).

Some of them, I’m aware, have divorced. A sad, but true reflection of national trends.

Personal anniversaries like this are great milestones. They remind me there’s much more to who I am than my cancerversary.

Thank God.

August 22, 2009 - Laughter Yoga

This little video is endearing – and not just because it features the always-amusing John Cleese as narrator. I’ve heard of India’s “laughter yoga,” but have never actually seen it before, in action.

I figure this stuff has got to be therapeutic – but, if nothing else, it looks like great fun:



I’m especially intrigued by the observation that it doesn’t seem to matter whether the laughter is forced or natural: the therapeutic benefit is the same.

Of course, as the doctor points out in the video, even if participants are forcing their laughter at first, after a few moments of looking at all those goofy faces, only a rock could keep from laughing in response.

Maybe laughter really is the best medicine.

August 19, 2009 - Resilience

A New York Times article speaks of a new sort of training the U.S. Army is implementing for more than a million of its soldiers: training meant to encourage emotional resilience.

The goal is to reduce the incidences of post-traumatic stress disorder in soldiers returning home from combat. The Army’s going ahead with the training program, even though some have expressed doubt that the service’s macho, just-suck-it-up culture is compatible with such a touchy-feely approach.

Behind the training is Dr. Martin Seligman of the University of Pennsylvania, a proponent of “positive psychology” – an approach that focuses more on wellness and prevention than on treating pathology.

“Psychology,” he explains, “has given us this whole language of pathology, so that a soldier in tears after seeing someone killed thinks, ‘Something's wrong with me; I have post-traumatic stress.’ The idea here is to give people a new vocabulary, to speak in terms of resilience. Most people who experience trauma don’t end up with P.T.S.D.; many experience post-traumatic growth.”

I find that remark of Dr. Seligman’s interesting with respect to cancer survivorship. For many people, the effect of cancer treatment seems similar to that of a soldier in combat. The key is to slow the logical progression from thinking of one’s life as normal to seeing it as utterly devastated. In reality, there’s a whole spectrum of possibilities between those two extremes. Cancer need not be a life-shattering experience, no more than a tour of duty in a war zone needs to be. Both experiences are difficult, even life-changing. Yet, both are survivable, psychologically speaking.

Many of us cancer patients, at the time of diagnosis, operate from a stereotypical, worst-case understanding of the disease. Our minds leap to the assumption that it’s a death sentence. We imagine the next words out of the doctor’s mouth, after “You have cancer,” will be “I advise you to get your affairs in order.” It’s not that way, of course, and is becoming less and less so as time goes by, as new treatment protocols emerge from the laboratories.

Cancer survivorship is no picnic. But, it’s not death row either.

Elizabeth Edwards’ latest book is titled, Resilience: Reflections on the Burdens and Gifts of Facing Life's Adversities. I haven’t read it yet, although I did read her autobiography, Saving Graces: Finding Solace and Strength from Friends and Strangers. I find it interesting that Elizabeth has latched onto this word “resilience,” in light of all the trials she’s been through: losing a son, getting cancer, responding to her husband’s marital infidelity in the glare of national publicity.

I found an excerpt from the book online, in which Elizabeth tells of meeting a fellow cancer survivor named Mark Gorman. He carries around with him a slip of paper from a fortune cookie that says, “You cannot change the wind, but you can adjust the sails.”

So true.

Resilience. It’s a good word.

August 18, 2009 - The Breadth of God

Rabbi David Wolpe recalls how, when he was laid low by chemotherapy, a verse from the Psalms kept coming to his mind:

“From out of the depths I called unto God;
He answered me and set me free.” (Psalm 118:5)

“Out of the depths” is a classic expression of lament. Wolpe brings added perspective as a scholar of the original Hebrew:

“But ‘the depths’ can be translated as ‘narrowness’ and ‘free’ as ‘expansively.’ A literal translation is – ‘from my narrowness I called to God and I was answered by breadth, O God.’ My world grew through pain and the increasing recognition of the ways in which it both opened my heart and helped me draw closer to others in pain. A single verse opened a world and a way of seeing that gave me strength and the breadth promised by the verse itself.

My spirit opened to an infinitely larger Spirit. When in pain, we tighten up like a fist. It is easy to push others away – after all, they are not feeling the pain – and to turn increasingly inward. Only I matter; only my pain is real. The Psalm urged me to expand, allowing me to embrace others, to understand that pain need not always be private, unshared. Open up, the Psalmist taught; both in heaven and on earth you are not alone.”

- Why Faith Matters (HarperOne, 2008), pp. 159-160.

Paradoxically, the experience of serious illness can deepen the life of the spirit. That was Rabbi Wolpe’s experience, and in the long run, it's been mine as well.

There were no epiphanies – no memorable, soul-stirring moments of encounter with God. Just a broadening of life, at a time when all the wisdom of the world could predict nothing but a narrowing.

I’m not sure how often this is true of people who approach an experience like cancer without the resources of faith to draw upon. I’d be curious to hear some personal testimony from atheists or agnostics on that subject. It seems to me that, without faith, cancer therapy can only be a narrowing experience. So many limitations, so many life-changes, arise in the form of side-effects. Fatigue alone – probably the most common and pervasive of side-effects – is a significant narrowing experience.

The gift many people of faith are fortunate enough to receive, out of cancer treatment, is an unexpected experience of spiritual breadth.

It’s the breadth of God.

August 11, 2009 - Bring On Those Nanobees

There’s a widespread news story in the past couple days about “nanobees” – a technique of cancer treatment involving nanoparticles that head right for tumor cells. Researchers at Washington University in St. Louis have armed these tiny particles with melittin, a protein that’s the active ingredient in bee venom.

It’s a colorful image: swarms of nanoparticles racing through the body, locating cancer cells and stinging them to death. The fact that these particles are armed with a chemical found in actual bee venom verges on the poetic.

Here’s Paul Schlesinger, one of the researchers, commenting on why melittin shows such promise as an anti-cancer agent:

“Melittin has been of interest to researchers because in high enough concentration it can destroy any cell it comes into contact with, making it an effective antibacterial and antifungal agent and potentially an anticancer agent. Cancer cells can adapt and develop resistance to many anticancer agents that alter gene function or target a cell’s DNA, but it’s hard for cells to find a way around the mechanism that melittin uses to kill.”

So far, the researchers have had success in killing human tumor cells that have been implanted in mice. The nanobees have done their job on the tumors, delivering the melittin without causing ill effects in the mice.

This is important because, if melittin were injected directly into the bloodstream, it would attack hemoglobin cells. Somehow, when this protein hitches a ride on a nanoparticle, it holds off on its venomous attack until the nanoparticle delivers it to a cancer cell.

Yes, there’s a lot of lab work involved in developing a treatment like this. I find it interesting, though, that the new therapy’s essential ingredient is something found in nature – in the humble honeybee.

Whatever actual treatments may emerge from this new approach, it’s comforting to think that the answer was out there in nature, all along.

August 5, 2009 - Pulling the Boat to Shore

More from Rabbi David J. Wolpe’s Why Faith Matters...

Wolpe retells a centuries-old rabbinic parable, about a man in a boat pulling on a rope, in order to bring his boat to shore. From the illusory perspective of a passenger on the boat, it may seem as though the boatman is pulling the shore to him. In reality, of course, it is the boat that is moving. The land is solid, substantial, immovable.

Prayer is like that, says Wolpe:

“People have much the same confusion about spiritual weight and motion: In prayer, some believe that you are pulling God closer to you. But in fact the heartfelt prayer pulls you closer to God.

I have prayed in fear and in joy, in crisis and in calm. Each time I understood that what I was asking for was not the object of my prayer. My prayer that I would be healed was a prayer, stripped of all its topmost layers, to be assured that whatever happened would be all right. Every prayer in this way is a prayer for peace; it is peace in the world and in one’s soul, the certainty that the pain is not empty, the world not a void, the soul is not alone.”

- Why Faith Matters (HarperOne, 2008), p. 142.

No wonder so many scripture passages describe God as a rock that cannot be moved.

So much about the way we live our lives is egocentric. We really do believe – as the ancients believed about their home, the earth – that the universe revolves around us. One of our deep, spiritual tasks, as we mature through life, is to dispossess ourselves of this mistaken notion.

Cancer has a way of bringing that truth home all the sooner.

August 1, 2009 - In the Now

I’m sitting on the screened-in porch of our little house in the big woods – what they call, here in the Adirondacks, our camp. These are the waning days of my vacation.

I’m joined here today by our college-age daughter, Ania. She’ll be with me through the weekend, before we make the long drive home on Monday.

I picked Ania up at the train station in Fort Edward, near Glens Falls, late Friday night. The train was nearly 3 hours late – good ol’ Amtrak – so by the time we drove the couple hours back up to our camp, we didn’t get to turn in till 3 a.m. Needless to say, we both slept through the morning.

Ania’s working on a jigsaw puzzle, one she remembers from when she was much smaller. Of all the things we could be doing, this is what she wants to do right now, and that’s fine with me. This is her time, and I’m happy to simply enjoy it with her.

Turns out the puzzle is missing a couple of pieces. That doesn’t faze her. To Ania, it’s all about the process, not the product.

I’ve had a week and a half to ease myself into relaxation mode, but Ania has the gift of being able to jump right into it. She’s much better at living in the now than I am. I take a lot longer to shed all the to-do list items I typically carry around in my head.

Living in the now is a survivorship skill. Some of us are just slow learners.

July 31, 2009 - Praying in the Tube

Finishing out my vacation, I’ve been enjoying some quiet time up at our Adirondacks place, near Jay, New York. One of the good books I’ve been reading is Why Faith Matters, by Rabbi David J. Wolpe. David thoughtfully sent me a copy of his book, after reading my May 9, 2009 blog entry about him.

The book has a lot to recommend it. It’s a thoughtful, honest answer to recent critics from the scientific world, like Christopher Hitchens and Richard Dawkins, who have ridiculed faith and elevated scientific insights in its place. (It’s also a quick read, very accessible to people without extensive training in either theology or science.)

David is in the same place I am on that question, maintaining that religion and science need not be in conflict with one another. There’s no reason why a scientist cannot also be a religious believer, nor a believer someone who also accepts the insights of evolutionary biology or physics.

One part of the book that speaks personally to me is when David shares his personal experience as a cancer survivor. Like me, he has non-Hodgkin lymphoma, in an incurable form. Some years previously, he had surgery to remove a brain tumor. Here, he writes of his experience of prayer, as he’s undergone various medical tests:

“Throughout my various illnesses, I prayed. My prayer was not answered because I lived; my prayer was answered because I felt better able to cope with my sickness. Each time I go for my regular tests, the CT or PET scans or an MRI, each time I am moved into the metal tube that will give an image of sickness or health, I pray. I do not pray because I believe God will give me a clear scan. I pray because I am not alone, and from gratitude that having been near death I am still in life. I pray not for magic but for closeness, not for miracles but for love.

The novelist George Meredith wrote, ‘Who rises from his prayer a better man, his prayer is answered.’”

– Why Faith Matters (HarperOne, 2008), p. 25.

Some of the most heartfelt prayers any of us pray are those uttered “in the tube.” When we find ourselves in the tube, what do we pray for? Miracles?

I’ve wondered, on similar occasions, what the point is of praying for a negative test result (“negative” is, of course, a positive or good result in medical parlance). The machine, be it CT scanner or PET scanner or whatever, is simply taking a picture of whatever is there. I’m not praying for the result to come out skewed, of course – it’s in my best interest that the test be accurate, that my doctors fully understand whatever’s going on inside my body. When we offer prayers in the tube, are we praying that, if there’s a malignancy there, God will vaporize it then and there, in the few seconds before the picture is taken?

No, as David indicates, I think prayer is a good bit more complex than that. When we pray, we often do have specific results in mind, but more importantly, we’re seeking to be in communion with God, and perhaps also to feel a sense of solidarity with others who form the community of prayer. Indeed, we pray “not for magic but for closeness, not for miracles but for love.”

Of miracles, C.S. Lewis once wrote: “Miracles are a retelling in small letters of the very same story which is written across the whole world in letters too large for some of us to see.”

The point is, to catch that larger vision.

Prayer changes things. Prayer changes us.

July 22, 2009 - Dulanermin

Paging through an old copy of Cure magazine (a publication for cancer survivors), I notice a headline in a full-page ad: “Have you been diagnosed with Follicular Non-Hodgkin’s Lymphoma (NHL) following previous rituximab therapy?”

“That’s me,” says I to myself.

Reading on, I discover it’s an ad for a clinical trial being conducted by Genentech – the drug company that brought us rituximab (Rituxan). They’re also the people who flew Claire and me to Las Vegas a few years ago, to give a little motivational talk to their sales force.

Down at the bottom is a serial number I can use at the clinicaltrials.gov website, to find out more about this study.

I visit that site, key in the number, and come up with a page describing a study of a new investigational drug called Apo2L/TRAIL – trade name, Dulanermin.

It’s a Phase II clinical trial – which means it’s still in the early stages of investigation. As of now, the trial is also fully subscribed: which may be just as well, since I’m not sure I’d want to risk the side effects of a Phase II trial when I’m still in a watch-and-wait mode and feeling good.

It’s interesting to read about this new drug, all the same, because it could be in my future.

Here’s the scoop, from an Amgen press release of a couple months ago (the Amgen pharmaceutical company is conducting this research in partnership with Genentech). Dulanermin is one of a family of “highly selective therapies to induce cancer cell death.” Well, who can argue with that?

“In cancer,” the article continues, “the dysregulation of apoptosis is critical in the development and survival of tumors.” I know, from previous reading, that apoptosis is cell death – the normal tendency of cells to die according to a genetically-preset timetable, only to be replaced by new cells. In cancer cells, the apoptosis switch is turned off, allowing them to continue to grow and wreak havoc in the body. “The dysregulation of apoptosis” is inscrutable medical jargon for “throwing a wrench into the genetic machinery that would otherwise cause cells to die when they reach the end of their natural lifespan.”

Dulanermin – if it fulfills the hopes of the pharmaceutical researchers – would yank that monkey-wrench back out of the machinery, so cells would continue to die according to their normal timetable and would never morph into cancer cells.

The article defines dulanermin as “a recombinant human protein that targets death receptors 4 and 5.” Sounds like something out of Star Wars: “Luke, your mission is to fly your X-fighter along the surface of the Death Star and take out death receptors 4 and 5. May the Force be with you.”

Go for it, Luke.

Is this the next Rituxan? Impossible to say. Clinical trials like this are being conducted all the time, mostly below the radar of non-medical types like me. Every once in a while, a full-page ad jumps out at us, a reminder that this valuable work is going on.

Kudos to the researchers for keeping up with this sort of thing.

Who knows? If this one ever makes it to a Phase III trial, maybe they can sign me up.

July 20, 2009 - Where Not to Get Sick

If you haven’t yet read Atul Gawande’s article in the June 1, 2009 New Yorker about the high cost of health care in McAllen, Texas, you should. It’s a must-read for anyone who’s following the health care funding debate.

Why McAllen? Why should that dusty burg at the southern tip of Texas have the highest per capita health care costs in America? Gawande’s article is a detective story, chronicling his efforts to answer that question.

The answer he comes up with is that McAllen’s doctors are responsible for many of these elevated costs. They order up a whole lot of costly, high-tech medical tests, more than most other doctors around the country:

“The most expensive piece of medical equipment, as the saying goes, is a doctor’s pen. And, as a rule, hospital executives don’t own the pen caps. Doctors do.”

Remarkably, the highly-tested patients of McAllen are no healthier than patients elsewhere. Compared to some cities with lower medical costs, they actually do worse.

It’s not that McAllen’s doctors are less competent than doctors elsewhere, or that they’re morally challenged. Gawande’s explanation is that the entire medical system in McAllen is engineered – to a degree not typical of many other communities – to encourage doctors to order marginally-necessary, or even unnecessary, tests, and to prescribe costly treatments that may be no more effective than cheaper alternatives.

There are lots of reasons for this. According to Gawande, it’s a complex constellation of factors, including:

- a high rate of for-profit, physician-owned medical facilities;
- an entrepreneurial culture that sees doctors as businessmen and -women, rather than healers;
- a well-founded fear of lawsuits that leads to defensive medicine;
- comparatively less coordination of care than in other places, leading to duplication of services.

“Providing health care is like building a house. The task requires experts, expensive equipment and materials, and a huge amount of coordination. Imagine that, instead of paying a contractor to pull a team together and keep them on track, you paid an electrician for every outlet he recommends, a plumber for every faucet, and a carpenter for every cabinet. Would you be surprised if you got a house with a thousand outlets, faucets, and cabinets, at three times the cost you expected, and the whole thing fell apart a couple of years later? Getting the country’s best electrician on the job (he trained at Harvard, somebody tells you) isn’t going to solve this problem. Nor will changing the person who writes him the check.”

It’s the system’s fault, says Gawande. This is a classic example of a systemic problem.

Gawande compares McAllen to another town that’s in the lowest 15 percent of health care costs, nationwide: Rochester, Minnesota, home of the world-famous Mayo Clinic. The most significant difference is that a high percentage of doctors in Rochester are employees of the clinic, rather than entrepreneurial owners of their own little medical businesses. Success in that setting is measured in healthy patients, not the number of patients served. The medical system in Rochester is engineered to maximize health outcomes rather than profits.

They say this article has become required reading in the White House, by staffers tasked with proposing to Congress a workable fix for the health-care funding crisis.

No wonder.

The American solution to medical cost-containment, until now, has been to rely on the insurance companies to ride herd on all this Wild West confusion. The only problem is, the insurance companies are no more concerned with positive health outcomes than physicians are. The insurance companies work for their stockholders, not for the patients.

We need to develop a health-care system that does work for the patients. Other countries (Britain, Canada, France) seem to know how do this better than we. This is a rare opportunity for our national leaders to think outside the box and develop a funding system that truly serves the greatest number of people.

Just don’t blow it, politicians. Take the lobbyists’ hands out of your pockets and pay attention to your constituents. We’re hurtin’ out here – especially in places like McAllen, Texas.

July 15, 2009 - A Common Story

Last night, Claire and I, along with our daughter Ania and niece Elizabeth, went to a midnight premiere of the film, Harry Potter and the Half-Blood Prince. It did not disappoint.

We’ve been fans of the Harry Potter books for some time, and have eagerly awaited each film as it’s come out.

I was struck by how many people showed up at our local multiplex (they were showing the film on at least two of their screens, possibly more). It’s a remarkable thing how many people of all ages have come to know and love these stories: enough to fill cinemas across the country till half-past three in the morning – and on a workday, at that. Judging from the comments we overheard, a great many of our fellow Potter-o-philes are very familiar indeed with minute details of J.K. Rowling’s teenage-wizarding yarn.

It’s a great thing to have a common story.

I was led to wonder how many people, in these days of secularism, feel such a passionate connection with the biblical story? Once upon a time, novelists, playwrights, screenwriters and other creative types could assume their audience could easily recognize biblical allusions. For example, I’ve been listening to a recording of Steinbeck’s great novel, East of Eden, as I drive around in the car. The book’s loaded with biblical symbolism. Were Steinbeck writing today, would he bother to tie his story so closely to archetypal biblical tales like that of Cain and Abel? Would his readers care?

The success of the Harry Potter oeuvre – and Tolkien’s Lord of the Rings before it – speaks to this secular culture’s hunger for a common story, a deeply moral tale grounded in religious sensibilities.

Every time I attend my monthly Leukemia and Lymphoma Society support group (and it’s been several months now since I’ve been there, due to schedule conflicts), I’m impressed by the power of the common story we cancer survivors share. The details, diagnoses and treatments may differ, but there’s a deep well of common experience. In a very real way, the story of my fellow group members is my story too.

Yes, it is a great thing to have a common story.

July 6, 2009 - A Week in Rivendell

Claire and I are spending the week at the Presbyterian House in Chautauqua, New York. Part of the venerable Chautauqua Institution, the Presbyterian House is an old-fashioned guesthouse that accommodates about 65 people. It’s adjacent to the 5,000-seat open-air Auditorium that’s the site of the principal concert, lecture and worship events that take place here.

I’m serving as Chaplain at the Presbyterian House. My duties are pretty light: I preached a sermon on Sunday, offer grace at meals and will conduct a program of my choice on Thursday evening (I’ll lead a discussion on John Calvin, since his 500th birthday is the next day). For this, Claire and I get free room and board for a week, as well as a “gate pass” that gets us into most of the concerts and events that take place here. A generous offer on the part of the Presbyterian House board, for which we’re very grateful.

Chautauqua’s quite an experience: a throwback, in many ways, to the early years of the 20th Century. It’s a picturesque lakeside village filled with Victorian-gingerbread houses. Cars are pretty much banned 7 days a week; the whole place is surrounded by a fence, and – except for Sundays – you have to have a gate pass (admission ticket) to get in. Some people own homes here, and others either rent places or stay in the many hotels and guest houses. Lots of people we’ve met have been coming here for decades.

Sitting in the Auditorium on Sunday, listening to Samuel Wells, chaplain of Duke University (the preacher for the week) give an excellent sermon, I was struck by how insular Chautauqua is. Introducing Sam was Joan Brown Campbell, former director of the National Council of Churches, who’s now head of the Department of Religion here.

Chautauqua is a bastion of old-time, liberal mainline Protestantism. While most historians agree the Protestant Ascendancy in America reached its high-water mark decades ago, in the Eisenhower era, you’d never know it here in this place. Looking out at the nearly-full auditorium, listening to the spirited singing of classic hymns accompanied by a massive pipe organ, I was struck by how much the place feels like a protected island in the storm.

Out there, mainline Protestant churches are struggling against fearsome cultural tides that threaten to sweep us away. Many local churches are enmeshed in “worship wars” that pit fans of guitar-accompanied praise songs against those who love organ-accompanied hymns. We’re beset by interminable, destructive debates over sexual ethics. My own baby boomer generation seems to be the first generation of Christians ever that doesn’t understand what committed, regular financial stewardship is all about, so many churches are cutting budgets and downsizing (and were doing so even before the present recession began). Out there, these are tough days to try to pastor a mainline Protestant church.

In here, though – inside the Chautauqua bubble – it’s as though none of this were happening. Life goes on here, as it has for generations. The faces of the preachers, lecturers and musicians change, of course, but the overall program is much as it’s always been.

Bill, a friend of mine, describes it as "Disneyland for intellectuals."

A literary metaphor occurred to me, as I was sitting there that first day, that to me describes the role Chautauqua plays in the mainline church. This place is Rivendell.

In J.R.R. Tolkien’s The Hobbit and The Lord of the Rings trilogy, Rivendell is the sheltered community of elves, whose powerful magic keeps creeping evil at bay. Much of Middle Earth is quaking in fear at the advancing armies of Saruman, and his more-powerful ally, the Dark Lord of Mordor, but in Rivendell, all is peaceful. When Frodo Baggins and his band of travelers reach Rivendell after facing all manner of perils, they know they are safe for as long as they tarry within the elves’ circle of protection.

Eventually, even the elves themselves will depart their “last homely house,” and somberly sail off in their elegantly-crafted sailboats to eternal life in the Grey Havens – which seems to function, in the Tolkien novels, as something like heaven. But, for the present, Rivendell is a haven in the storm, a place of rest, refreshment, and re-equipping for the battle.

I can use this sort of R&R in a personal sense, of course. I haven’t been thinking about cancer much, while I’m here – although a few Presbyterian House residents, knowing of my history with lymphoma, have come up to me to share their own struggles with the disease. I’ve been thinking a good deal more about how wonderful life in the mainline Protestant church would be if all our congregations were filled with members and ministers like the good folks here. There’s a real spirit of caring and openness and generosity that permeates the place. Would that we could recreate it in our own communities back home!

Looking out over the auditorium congregation, I was also struck by how much gray and white hair there is. This place is teeming with AARP members. Many of the younger folks we’ve met – twenty- and thirty-somethings with kids in tow – are here with their parents and grandparents. It’s a popular spot for family reunions. Would the younger ones choose to come on their own?

All of which raises the question.... Whither mainline Protestantism? Will this congenial crowd return to their home churches, refreshed and renewed, equipped to bear witness to the gospel in edgy, new ways? Or, will they hang around spiritual oases like this a while longer, before packing it in and sailing off to the Grey Havens one day?

I’ve got a feeling the renewal of the mainline church won’t be sparked in places like Chautauqua. As wonderful as this place feels, it’s more about the past than the future.

But even so, it feels good to rest here a little while. Even the Fellowship of the Ring had to take a breather in Rivendell.

July 3, 2009 - Profits and Pain

A recent editorial in one of my favorite journals, The Christian Century, raises a pertinent question about the present healthcare-reform debate:

“The logic of putting citizens into a government-sponsored insurance pool is clear: it drastically cuts overhead, equalizes care, and meets the needs of those who can't afford or obtain coverage from for-profit insurers, who cut their costs by excluding patients with serious medical problems – precisely the people who most need the insurance and the medical care. But that logic alone will hardly slay the hardline defenders of the for-profit insurance system. The political and practical question of the moment... is whether there is any viable compromise – is there a coherent incremental step between the private system we have now and a full-fledged single-payer public plan?”

President Obama seems to think there is – which is why he’s backed away from his campaign promise to move expeditiously to a single-payer health system. Now, he’s mired in the boggy no-man’s-land between the single-payer advocates on the one hand and the insurance companies (clinging to the tattered remnants of our dysfunctional healthcare-funding system) on the other. He’s dodging rotten tomatoes being hurled from both sides.

It’s a battle of ideologies: between the free-market true-believers on the one hand – who are convinced not only that “the business of America is business,” as Calvin Coolidge famously said, but that the best marketplace regulation is no regulation – and those who believe history teaches, on the other hand, that a capitalist economy will end up eating its young if government doesn’t step in with some timely regulation.

In the same issue of The Christian Century, social ethicist Gary Dorrien makes this important observation:

“A fair amount of time has to be spent repeating over and over that single-payer is not socialized medicine, and a public option among private competitors is even farther from it. But we are approaching the point where opponents of health-care reform will start to stress the opposite concern. Their concern is not that a government program won’t work. The real worry, for all who want to keep the present system, is that a government program will work too well.”

“Working too well,” of course, means cutting into Big Insurance’s profits.

Are profits always good? That’s the essential question. Are they still good, even when the unfettered pursuit of profits causes pain for increasing numbers of people? How many of our neighbors must feel pain before the larger culture sits up and takes notice, demanding substantive change? How many uninsured and undertreated Americans is our system willing to throw under a speeding ambulance, before we’re willing to even consider following the lead of just about every other industrialized nation, implementing a national health-insurance system?

That’s the question I sigh and ask myself these days, anyway, as I scan the headlines.

June 26, 2009 - High Anxiety Threshold?

This afternoon I have a routine office visit with Dr. Lerner, my oncologist. He’s received a report from Dr. Sher, the endocrinologist I met with a week or so ago (I didn’t blog about that visit at the time).

Those who’ve been following this blog for a few months may recall that, back on Valentine’s Day, I had a PET/CT scan that revealed a possible nodule on my thyroid gland. A subsequent ultrasound confirmed that, yes, there was something abnormal growing out of the left side of my thyroid.

Dr. Lerner told me he didn’t think it was anything significant – most of these growths are benign, he explained, and this one was pretty small, at that – but he thought it was worth seeing an endocrinologist to get it checked out.

Through a series of scheduling misadventures, it was only a couple of weeks ago that I finally got in to see the endocrinologist. Dr. Lerner had given me the name of a Dr. Asnani, saying he wanted me to see that particular specialist, and none other – although he emphasized it wasn’t urgent, and I could meet with him any time in the next several months. Well, Dr. Asnani’s office staff told me he was in India on an extended visit, and they weren’t even making appointments for him until after his return. I called back over a month later, as they had instructed, and it turned out they had no free appointment for about another month and a half. The long and the short of it was that I finally got into his waiting room on June 16th – just over four months after the nodule first appeared on the CT scan!

Come to find out, Dr. Asnani wasn’t available that day, as he was making hospital rounds. I’d be seen by a resident, Dr. Lee, instead, and then by Dr. Asnani’s partner, Dr. Sher. Dr. Lee was actually the most helpful. She spent a lot of time with me, explained everything, and was very responsive to all my questions. She carefully probed my thyroid with her fingers, taking great pains to see if she could feel the nodule. Then, I saw Dr. Sher for all of about 2 minutes – no examination, just a reiteration of what Dr. Lee had already told me.

When I explain all this to Dr. Lerner today he says, that’s fine, Dr. Sher’s name would have been one he would have recommended – even over Dr. Asnani – but the last several times he’d tried to refer patients to Dr. Sher, they were turned away with the explanation that he wasn’t accepting any new patients! (The ways of medical scheduling are exceeding strange.)

So, what did Drs. Lee and Sher tell me about my thyroid nodule? That it’s very small (0.8 centimeters), too small to biopsy. They recommended I have another thyroid ultrasound in 6 months, and if it’s bigger than a centimeter, it may be wise to have it biopsied. Even so, they reassured me, I shouldn’t worry about it – only a small percentage of such nodules are malignant, so it’s just a precaution.

Well, I went away from the endocrinology office thinking it’s probably a good thing I’m going through this thyroid stuff after having been through a lymphoma diagnosis, chemo and all the rest – I might have been a nervous wreck, otherwise. My anxiety threshold when it comes to things medical has certainly gotten higher!

Dr. Lerner hands me a script for my next PET/CT scan in early September: time to start the whole cycle again.

June 25, 2009 - Farrah, Jane and "Let It Be"

News has just come through, today, of the death of actor and model Farrah Fawcett. I wrote about her cancer struggle in my May 16th blog entry. Her television documentary, Farrah’s Story, was a graphic account of the last months of her life.

While the film attracted some negative comments from critics, who branded it as reality-show exploitation, I saw it differently. It seemed to me a courageous (although rough-around-the-edges) statement from a dying woman whose deepest desire was to “not go gentle into that good night.”

Sure, Farrah’s story was hardly typical. She was an enormously wealthy woman with the means to jet all over the world seeking alternative cancer treatments. She was also more vocal than some about the problem of how cancer was affecting her physical beauty (hardly surprising in a woman who, in her prime, was a fashion icon). Yet, whose cancer story is ever typical, anyway? We’re all individuals, and in our respective responses to this disease we each display our own interior beauty.

This morning I walked across the street to St. Mary’s By-the-Sea Episcopal Church to attend the funeral of a neighbor, Jane, who died at mid-life after having been diagnosed about a year ago with a pretty-much untreatable form of cancer. She left behind two teenage daughters and a whole churchful of friends.

Jane designed the funeral service herself, down to every last detail. While it wove in and out of the Book of Common Prayer liturgy, the musical selections and personal testimonies were hardly typical funeral fare. We sang along with the choir to Pete Seeger’s “Turn, Turn, Turn” and listened to a talented guitarist sing the jaunty medley of “Somewhere Over the Rainbow” (as styled by the by the late Hawaiian singer Israel Kamakawiwo’ole) and “What a Wonderful World” that’s been making the rounds of indie singers.



We finished by singing the Beatles’ “Let It Be” – a baby boomer anthem if ever there was one. I’ve always heard the song’s mention of “mother Mary” was inspired by a dream Paul McCartney had of his own mother, whose name was Mary. After checking it out on Wikipedia, I learned his mother died when he was 14, of cancer. As she came to Paul in the dream, he was blessed with an overwhelming feeling of comfort and peace. According to Wikipedia, he later told an interviewer: “It was great to visit with her again. I felt very blessed to have that dream. So that got me writing ‘Let It Be’.” Speaking to another interviewer, he shared how in the dream his mother had comforted him: “It will be all right, just let it be.”

Some have assumed, I know, that “mother Mary” in the song must surely be Mary, the mother of Jesus, but of course that’s not the case. So, it doesn’t make sense, as some have done, to sing it in church as a celebration of that Mary. It turns out, though, in this context, “Let It Be” has a compelling personal (if not exactly liturgical) rightness.

From what I know of Jane – a deep-thinking, highly organized person – it’s likely she knew this story, and included it in the service for that reason. It’s the message she would have wanted her own daughters to take away from the experience of losing their mother:

“And when the night is cloudy,
there is still a light, that shines on me,
shine until tomorrow, let it be.
I wake up to the sound of music, mother Mary comes to me,
speaking words of wisdom, let it be.”

June 14, 2009 - New Lymphoma Vaccine

I’m feeling hopeful, today, after reading some articles about a new vaccine for follicular lymphoma, recently announced by Dr. Stephen Schuster, of the University of Pennsylvania’s Abramson Cancer Center, at the American Society of Clinical Oncology’s annual meeting in Orlando. One article is a University of Pennsylvania press release, the other an ABC News story.

Dr. Schuster’s study involves a personalized cancer vaccine, fabricated out of the patient’s own malignant cells. Other cancer vaccines are created to go after some factor that influences the survival of cancer cells. This one is different, Dr. Schuster says, because it goes after the cancer itself. The vaccine – or, rather, the process of producing it, since every patient’s version is different – is called BiovaxID.

I suppose it’s kind of like giving a bloodhound an article of clothing belonging to the fugitive being tracked. Having memorized the criminal’s distinctive scent, the hound is able to sniff out the quarry. The cancer vaccine, equipped with chemical markers from the patient’s malignant cells, does much the same thing.

The vaccines, which take 3 months to produce, are given in 5 injections spaced over 6 months.

The vaccine was given to follicular lymphoma patients who had received the standard CHOP chemotherapy treatment (the same one I had, minus the Rituxan), and who had gone into a remission lasting longer than 6 months (mine lasted 8 months). Those patients in the trial who received BiovaxID did significantly better than those in the control group: 44.2 months without a relapse, on the average, for those in the vaccine group, as compared with 30.6 months for those in the control group.

Dr. Schuster is calling for a new clinical trial, to see how the results will come out for those treated with R-CHOP (CHOP + Rituxan), as I was.

I wonder how long it will be before the vaccine is available, outside of clinical trials. I wonder, also, to which patients it would be given: whether only to people like those in the clinical trial, who are still in remission after treatment, or to people like me as well, who are out of remission. (Then again, maybe it could help me after my watching and waiting time is over, and some other treatment puts me back into remission.)

Complicated questions, to be sure. Regardless, news like this is always a source of hope.

June 12, 2009 - Beside the Lake

It’s nearing the end of a remarkable day, for me. After breakfast and a time of worship, our retreat leaders sent us off to find a place to spend two and a half hours in quiet discernment, seeking hints to the leading of the Holy Spirit in our lives. Four days’ work have led up to this point. I have been much occupied in reflecting on various things that have led me to feel spiritually and vocationally stuck. Many of them derive, directly or indirectly, from the way lymphoma has interrupted my life.

Reflecting back, now, on that time of discernment...

I make my way along the path to a large, lakeside picnic pavilion on the conference center grounds. The place, which is evidently where they hold cookouts as well as some wedding receptions, is deserted. Walking across the wooden deck to the railing by the water’s edge, I notice something at my feet. It’s a bird’s nest, with a yellow-and white smear on the planks beside it. Evidently, some prowling carnivore swept the nest down from a rafter overhead, then devoured the frail eggs that had been nestled in it.

Saddened by nature’s carnage, I pull a folding chair to the edge of the dance floor and sit there, looking across the lake.

Skirted by rolling mist, the dark water reflects the tall trees on the opposite shore. Occasionally, a fish breaks the opaque surface. The calling of circling birds reminds me this place is teeming with life.

Taking out my journal, I begin to write a poem that records the way this scene speaks to me, in a way I can only conclude is the leading of the Spirit:

CONSIDER THE BIRDS

“Look at the birds of the air...” – Matthew 6:26

Bird’s nest
cast on the wooden planks of a picnic pavilion:
empty,
bereft.
Beside it,
a spattered mess of yolk and white:
life’s potential
spilled out
by some anonymous predator.
Life is hard,
far harder than we know
through pampered days;
cruel, too,
and unspeakably random.
So many fruits of careful, loving preparation
cast aside
with one sweep of the predator’s paw,
one feathered flurry of raptor-wings.
And what of the wattle-and-daub sanctuary
of my life, my career (if I may use that un-theological word)?
There is sadness:
immense sadness,
mourning,
for all the cancer has swept away.
Sometimes I fear my vaunted call to ministry
has become but a smear of yolk and white
upon the deck.

Whose call is it, anyway,
I hasten to remind myself?

Out on the lake,
a man is rowing backwards,
facing towards the prow.
He wants to see where he is going.
Does he not trust the dread discipline
of rowing towards a destination he cannot see,
eyes fixed on the reference point?

Get up.
Get up and walk a spiral labyrinth
upon the dance floor:
a squared-off spiral,
defined by angular symmetry of faux-wood tiles.
Constriction
on the way in,
tightness.
Options, one by one,
falling away.
At the center,
a swift turn upon the heel:
scarcely room to breathe.
But then,
but then, the turning.
“To turn, turn will be our delight,
till by turning, turning we come out right.”

What of the ravaged nest?
What of it?
Shall my eye continually be drawn
to such a horror?
What of the bird-mother,
whose eye must have,
one time at least,
been drawn to that appalling sight?
There is birdsong in this place,
to be sure,
but no black-winged mourner,
perched disconsolately upon a rafter.

Then
comes the Sweeper,
broom in hand.
His eye falls upon the downed nest
before he stoops down,
pausing scarcely a moment,
and picks it up in two fingers
before walking solemnly to the rail
and tossing it gently into the lake:
burial at sea.
A squeeze-bottle of pink disinfectant
completes the ritual,
soaking the boards:
chemical absolution.
A few passes of this Undertaker’s broom,
and all that remains
is a wet spot upon the planking.
Nature,
like the mother bird,
has a way of moving on,
it would seem.
(Later,
Archangel Janitor paces slowly away,
squeeze-bottle in one hand,
rag in the other.)

Tears wet my eyes
as I recall how many days I have wasted:
days the Lord has made,
intended for rejoicing.
How many pounds of walking burden
have I allowed to gather at my waist?
How many meaningless rectangles of paper –
8½ by 11, and other shapes and sizes –
have I allowed to join the dusty disarray
on my abandoned desktop?
Have I become a bystander to my own, neglected life,
in ways the mother bird
never allowed herself to be?

I sit, davening, upon my folding chair.

“What are you doing here, Elijah?”
“I have been very zealous for the Lord, the God of hosts.”
I have fought the helmeted cancer-hordes to a draw.
(So far, they have not returned,
but for the occasional, ominous scout.)
“I, I alone am left” has been my cry.

The Lord, of course,
would not,
does not
let a true prophet get away
with such an easy answer.

My way back
is serenaded
with birdsong.

June 11, 2009 - At CREDO

I realize it’s been quite a while since my last post. Life has been more than busy – bordering on overwhelming, at times. Each year, I always underestimate how hectic the month of June is, in parish ministry. June is the month when most church programs make ready to go into hibernation for the summer (yes, even here in a beachfront resort community). There are lots of end-of-the-year special events to occupy a pastor’s time.

Not only that, I’ve been away from home since Monday, at a continuing-education event called CREDO (an acronym for Clergy Reflection Education Discernment Opportunity, which also happens to spell out the Latin word for “I believe” – or, as some have more poetically pondered, “I give my heart to”). The invitation-only program is put on (and heavily subsidized, financially) by the Board of Pensions of the Presbyterian Church (U.S.A.), although they borrowed its design from the Episcopalians, who pioneered this concept of ministry support. We’re meeting at Beaver Hollow, a well-appointed executive conference center in a rustic, woodsy setting near Buffalo, New York.

It’s an unusually long continuing education conference: eight days. It’s kind of a mid-career tune-up for ministers who have been at this work for a long time and who’ve perhaps have not had an opportunity for a while to get away from the daily grind and reflect on the experiences that led us into this line of work in the first place.

It’s a wonderful group of people: gifted men and women from all over the country who are, for the most part, quite good at what they do. The ages range from 40-55. Few of us have ever met before, but the bonding was instantaneous and we’ve been having a great time.

It’s a wholistic sort of approach, focusing on finances, health, spirituality and vocation. Mostly we’ve been listening to presentations so far, with some small group work. Later in the event, there will be some time set aside for writing our personal “CREDO Plan,” a sort of personal to-do list for strengthening our spiritual life and ministry.

I’d like to share something from a CREDO handout on the subject of health. It has a lot to say to cancer survivors, and to everyone else as well:

A VIEW OF HEALTH

1. Health means a sufficient absence of injury or disease processes so that my basic functioning operates without impairment (This is the traditional view of health).

2. Health means having an awareness of and reliance upon the life force within each one of us, which makes for growth and in the event of illness, for recuperation (we call it a positive attitude).

3. Health means having a sense that each of us belongs to others, and a desire to contribute to the common good (we call it an other-centered attitude).

4. Health means having an understanding that each of us is more than a product of history; that as individuals, we cannot only cope with the flow of events, but we also participate in shaping them (we are co-creators).

5. Health means interacting with others in such a way that our self-constancy, stability and individuality are not dissolved; even under threat (our egos are intact).

6. Health means having a sense of integrity. That is, we function as a unit and are not self-destructing (we have direction, focus, purpose).

7. Health means having a sense of the value of life and of living as a steward, not an owner (we are optimistic and free because nothing belongs to us individually. We have nothing to lose. We can live sacrificially).

8. Health means having a view of life that acknowledges dependency as a part of reality and rejoices in it; which recognizes gifts, including the gift of God’s love, mercy and ever-present Spirit and gratefully accepts them; which accepts creaturehood, as befits children of God.

9. Health means having an appreciation of living from the aspect of eternity that allows us to find security in the hope and expectation of life everlasting, not everlasting life (We can hang loose through all adversities of life because our perspective is eternal).

10. Health means embracing mystery and ambiguity as welcome friends.

Source: Adapted from Richard P. Ellerbrake’s remarks, Helen J. Westberg Lecture, Sixteenth Annual Westberg Symposium, September 11, 2002.

What I like about this statement is the way it integrates the medical and the spiritual. We need more of that sort of thing.