December 27, 2010 - Putting the "Death Panel" Myth to Rest

A New York Times article published on Christmas Day reports the good news that sanity has finally prevailed in the halls of government, as further regulations connected with the landmark healthcare-reform legislation enable Medicare funding for advanced end-of-life planning.

This news comes - to my mind, anyway - with a particular sense of relief. Opponents of healthcare reform have cynically and cruelly exploited dying people for their own political gain, by raising up the myth of government "death panels." According to that improbable scenario, government bureaucrats would have played a role akin to that of the infamous Dr. Mengele at the Auschwitz concentration camp (he was the camp physician who decided, with a wave of his baton, which new prisoners would go to the barracks and which would be sent directly to the gas chambers).

What the original legislation, in fact, provided was money to pay for annual doctor's office visits - for those critically-ill patients who want them - at which the various options for end-of-life care would be explained. One significant option is hospice - the part of the medical community in which Claire works, providing bereavement counseling and support.

The recent news is that the Obama administration has quietly restored this funding - not through legislation this time, but through regulation-writing (it had been in the original bill, but was pulled out in reaction to the "death panel" kerfuffle).

I'm especially glad to see this funding restored because of situations I've seen arise time and again in my ministry (and which Claire sees much more often in hers). Far too often, patients avoid having the hospice discussion with their doctors and family members until death is imminent and it's too late for them to derive much benefit from hospice care. When patients' time on the program is measured in hours rather than days, there's not a lot the hospice team can do for them.

Hospice care is not intended to be delivered in such an accelerated time frame. Yes, it's designed for patients who are expected to live fewer than six months, but a lot can be accomplished in that period of time, improving significantly patients' comfort and quality of life.

Talking about hospice is NOT giving up on patients. Quite the contrary, it's about empowering seriously ill patients to live the remaining portion of their lives as they wish. If patients and their families decide to continue aggressive treatment, so be it. If they opt, instead, to go home to a hospital bed in the living room, with advanced pain control and unlimited visits from their grandchildren, then that's their decision and it ought to be respected.

Irrational fear of "death panels" has kept people off hospice care who should have been receiving it much sooner - and would very much have wanted it, had they understood the patient-centered philosophy behind it. This restored funding will allow doctors to plan significant time for consultations that will equip patients and family members to make their own, carefully considered decisions about backing off from aggressive treatment and focusing more on palliative care.

Time and again, I've heard bereaved family members say they wish their loved one had signed onto hospice earlier, but they just didn't have a sense of what hospice is all about until it was nearly too late.

Chalk this one up as a triumph for patients' rights: to make their own, well-informed healthcare choices.

August 23, 2010 – What the Biograph Knows

Last Tuesday, I went for a PET/CT scan. This is perfectly routine: I get scans at intervals, alternating between the PET/CT and a regular CT scan with contrast. It’s how Dr. Lerner and I figure out if we’re still watching and waiting, or if it’s time to take a more proactive stance.

A year or so ago, the testing interval was every 3 months. Now, the doctor has spread the schedule out to every 6 months. That’s because my lymphoma has been so lackadaisical of late – a good sign.

The scanner lives on the back of a tractor-trailer truck pulled up to a loading dock at Jersey Shore University Medical Center. It’s there a couple days a week. What hospitals it visits the other days of the week, I’m not sure.

Here’s what I recall of the experience...

I’ve been through this enough times to know exactly what to expect. Pin-prick on the finger-tip, for the instant blood test to make sure I’m not diabetic. IV needle inserted in the crook of the arm, into which the technician injects a hypodermic-full of liquid out of a thick, cylindrical, silvery-metal case (that’s lead casing, to protect the technician from the radioactive glucose solution I get to have coursing through my bloodstream for the next several hours – lucky me). The IV needle comes out right after that, then it’s 45 minutes’ R&R in a comfy lounge chair. During that time I’m instructed to sit quietly, even nap if I want. Only then am I ready for the scan.

That entails lying flat on my back, perfectly motionless, for 30-45 minutes, arms extended straight back over my head. I know from experience how the muscle-pain that develops in my arms, after 20 minutes or so of this unnatural posture, is the worst part.

Just before climbing onto the narrow table that will slide me through the machine’s donut-hole, I notice an inscription on the device: “SIEMENS Biograph 6.”

The manufacturer, of course, is Siemens, the medical-equipment giant. Biograph 6 is evidently the model name and number.

Ya gotta think of something while you’re lying on your back, trying to keep from counting the minutes, so I start musing on that word, “Biograph.” Obviously, it’s a trade name dreamed up by the Siemens marketing people. “Bio” means life, and “graph” means writing. Put the two together and the name suggests a chartful of medical data – which is, essentially, what this high-tech test produces. Makes good marketing sense.

It also calls to mind, of course, the word “biography.” Coincidentally, during the 45-minute rest period before my scan, I started reading a biography: The Most Famous Man in America: The Biography of Henry Ward Beecher, by Debby Applegate. Her book’s a fine example of the genre: a collection of facts about the famous preacher’s life, but also so much more than mere facts. The facts are presented so as to conjure up the real person, as though he could step right off the page.

That’s what a good biography does. Yet, I wonder as I lie there: What is it that a good Biograph does?

I suppose the thing that’s most important to the medical community is the way its visioning software slices and dices my body into thousands of paper-thin segments, which it then analyzes, looking for the rapidly-metabolizing tissue indicating a possible malignancy. (I don’t feel a thing while all this high-tech butchery is going on, by the way. Except for the pain from my hyper-extended upper arms, I could probably fall asleep there inside the donut-hole.)

Likewise, a biographer like Debby Applegate gathers and arranges a whole lot of facts about her subject’s life – scanning it, as it were – before sitting down at her word processor. Once she starts to write, though, her goal is not to simply pour out the unedited facts, performing the historical equivalent of a data-dump. No, the biographer’s aiming to put Henry Ward Beecher back together again, so he arises in the reader’s mind as a 3-dimensional personality.

I heard Debby give a talk about her book at the Presbyterian Historical Society Luncheon at our denomination’s General Assembly last month. She spoke of Beecher in a way that intimated he’d become very real to her. I recall her making an offhand remark about how she’d been “living with” Beecher for quite a number of years, as she researched and wrote the book.

The similarity of names makes an unlikely association in my mind to the Marx Brothers’ film, Go West, in which Chico and Harpo are walking up and down a railroad platform as Chico repeatedly calls out, “Mr. Beecher, we’re here to meet you!”

“Are you looking for John Beecher?” asks a serious-looking businessman in a suit. “I’m John Beecher.”

Chico’s eyes narrow suspiciously. “We don’t recognize you, do we, Rusty?” (Rusty is played by Harpo, who emphatically shakes his head “No.”)

“Naturally you don’t recognize me,” sniffs Beecher, officiously. “We’ve never met.”

“Then how do I know it’s you?”

Typical Marx Brothers lunacy.

Does the Siemens Biograph know it’s me? Having sliced me up into a thousand pieces (or, more precisely, into millions of little ones and zeroes), how will it put me back together again?

The technicians running the scanner couldn’t be more cordial or professional, but even so, the whole process is designed to produce a numerical output that falls far short of describing who I really am.

Following protocol, the technician checked my hospital bracelet as I came in. It was his way of answering Chico’s question from the movie: “Then how do I know it’s you?”

Yet, he doesn’t really know me. Nor will the radiologist who reads the results and reports them back to Dr. Lerner. To the inquisitive electronic eye of the Biograph, I’m just a biological system, nothing more.

There’s a famous scene in Shakespeare’s The Merchant of Venice, in which Shylock muses on the alienation he feels as a Jew, living in a Christian country:

“I am a Jew. Hath not a Jew eyes? hath not a Jew hands, organs, dimensions, senses, affections, passions? fed with the same food, hurt with the same weapons, subject to the same diseases, healed by the same means, warmed and cooled by the same winter and summer, as a Christian is? If you prick us, do we not bleed? if you tickle us, do we not laugh? if you poison us, do we not die? and if you wrong us, shall we not revenge?”
[The Merchant of Venice, Act 3, Scene 1]

One of the things we cancer patients appreciate the most is when someone treats us as a real person, not a mere medical case. I’ve been fortunate to get that sort of response from Dr. Lerner and from most of the people who’ve cared for me, over the past five years or so of tests and treatments.

We’d be foolish to expect that sort of thing from the Biograph – although, as we look to our fellow human beings who wear the lab coats and the nurses’ uniforms, is it out of line for us to hope for a little personal interest in our biography?

What To Say When a Friend Has Cancer

Here's an insightful article, shared by Betsy de Parry on the Patients Against Lymphoma group on Facebook. "Vital Tips to Keep Hope Alive Through Cancer" is a blog post by Lori Hope, a lung cancer survivor, on the CarePages website.

Lori's main focus is on what not to say to friends who have cancer. It really is helpful to think ahead of time about how to use our words in helpful, healing ways.

Sometimes the thoughts that first come to mind aren't all that therapeutic for friends with cancer. They may even make life more difficult. Such comments say more about ourselves, and our anxieties, than about the other's needs.

Here's a brief, digested form of Lori's pointers. For the full list, click on the link to the full article.)

• Don’t inadvertently blame the victims by hinting that they may not be thinking positively.

• Don’t blame the victims by asking about possible risky behaviors they may previously have engaged in, like smoking. This is an absolute no-no. (You may be wondering about it, but don't ask.)

• Don't share stories about people you've known who've had the same form of cancer, but didn't survive (Lori says she needs to hear at least five success stories to counter one such horror story).

To that one, I'd add a codicil: Don't share stories about people who had a completely different kind of cancer, thinking it will somehow be encouraging. The word "cancer" covers a vast family of diseases, making it very hard to generalize from one type to another.

So much for what not to say. Now, here are a few positive suggestions:

• For friends who may find it hard to be continually confronted by discouraging statistics, offer to help with research - but don't forward articles without first reading them through completely.

• Try not to be gloomy. Humor is therapeutic, so help your cancer-survivor friends find things to laugh about!

• Every once in a while, remind your friends you’ll be there for them, no matter what. Some survivors have the experience of losing longtime friends who simply drift away, because they can't handle the situation emotionally. It's always good to be reminded of friends who are still there for us.

May 16, 2010 - What To Say or Do When a Friend Gets Cancer

Here’s a helpful video clip from the Today Show, featuring Lori Hope, author of the new book, Help Me Live: 20 Things People with Cancer Want You to Know:

Visit msnbc.com for breaking news, world news, and news about the economy

When I was sick, I was so fortunate to have so many friends from the church bring over food for the family. We never got tired of those gestures, repeated every other day or so for months. It wasn’t an economic thing; it was a way of giving us time with each other.

Of the clueless comments cited by survivors in the video clip, the one I remember hearing is “I know exactly how you’re feeling.” To me, that’s probably the number-one thing not to say. I’s meant to be a helpful comment, but it’s so patently untrue. Every person’s journey is different. Sure, there are points of commonality, but we do well to respect each other’s differences.

I also remember people quizzing me about what I might have done that brought on cancer. Is there any dietary or environmental link that leads to lymphoma, they wanted to know. I figure these comments had more to do with the person making them than with me. They saw what I was going through, and they were trying to reassure themselves that the same thing wasn’t likely to happen to them.

I do have to confess, though, that when I hear of someone diagnosed with lung cancer, I really have to refrain from asking if the person ever smoked. Maybe it’s a carryover from my experience with my father, who died of smoking-induced emphysema complicated by lung cancer. I want to reassure myself I’m not a risk.

Whether the loved one persisted in unhealthy, cancer-causing behaviors is neither here nor there. Such a question has nothing to do with begin supportive. It’s more an attempt to satisfy our own morbid curiosity, and to allay our irrational fears. So, I really work hard to avoid asking that one, myself.

April 13, 2010 - Cancer Concern Center Article

An article in today’s Asbury Park Press has some nice things to say about the Cancer Concern Center, a local organization that provided help to me at one of my lowest points, as my chemotherapy was coming to an end.

Until that time, I’d been toughing it out, turning to no one other than God and my family for support. The night I ventured down the street, to the rented commercial office space where the Cancer Concern Center support groups hold their meetings, was a revelation.

I felt less alone in what I was experiencing. Others had been there, too, and were more than willing to offer support and advice. There was concern – as promised in the organization’s name – but also friendship and even laughter.

From the article:

“The Cancer Concern Center, now in its 13th year, provides weekly support meetings, meditation and yoga classes, massage and Reiki therapy, nutritional workshops and new wigs to local residents. All the work is done by a volunteer staff, and all donations go to client programs.

‘Everything we do here revolves around the women and men who have the courage to walk through our front door,’ said Lisa Montalbano, volunteer office manager at the Cancer Concern Center. ‘We keep cancer survivors from slipping through the cracks of depression and despair.’”

So true.

There are other support-group providers with a national profile, like The Wellness Community, that have meant a lot to me as well. This is a local, home-grown organization. Here in Point Pleasant Beach, we're proud of what they do.

April 3, 2010 - When All You Have Left Is Yourself

Today I’m reading an unusual article in Cure magazine online, "Keeping the Faith," by Kathy Latour. What’s unusual about it is that it deals with the topic of cancer and spirituality with attention to spiritual community.

I find that refreshing, because there’s lots of talk about a sort of generic spirituality when it comes to cancer survivorship. “If it makes you feel good, do it” is the all-purpose mantra. The problem with this sort of approach is that it ends up being a do-it-yourself activity, like trimming your nose-hairs or working out with a Thighmaster.

I think this individualism comes out of good old American separation-of-church-and-state thinking – something I’m in favor of when it comes to politics, but which is woefully inadequate in all but the most superficial discussions of religious faith. Take that line of thinking to its extreme, and you’ll end up like poor old President Eisenhower – who supposedly let himself be quoted saying: “Our government has no sense unless it is founded in a deeply felt religious faith, and I don’t care what it is.”

Some presidential scholars insist that’s an apocryphal remark, and it may well be – but, it catches the spirit of the age. (Eisenhower was a Presbyterian, by the way – though, if he really said that, I suppose he missed Sunday School the day they were teaching Calvin’s high conception of the church.)

In cancer support groups, “guided meditations” abound – those stress-relieving exercises that begin: “Close your eyes, pay attention to your breathing, and imagine yourself walking across a grassy field...”

Now, I can understand the appeal of that approach, to those who arrange chairs in a circle for their cancer-and-spirituality workshops. You can be Christian, Muslim, Buddhist, Jew or South Sea Islands cargo cultist, and still get something out of a guided meditation exercise. Whether the glowing figure walking towards you across that grassy field is Jesus or the Bodhisattva Maitreya makes little difference, because it’s happening in your own, private mental world. No muss, no fuss, no cross-denominational misunderstandings. Everybody leaves happy.

Outside of houses of worship, spiritual support groups are often led by people without any strong (or strongly evident) religious affiliation – the “I’m spiritual but not religious” sort of person. You’d think hospitals and agencies would seek out seasoned religious professionals – nuns who work as spiritual directors, say, or Muslim teachers of Sufi prayer – as long as they’re committed to interfaith dialogue. But, no. Charitable-organization program directors aren’t known for sticking their necks out, so they smile beneficently on psychiatric social workers with no theological background who say, “I can do that,” or on generic “interfaith ministers” holding degrees from unaccredited seminaries (or, God forbid, even internet “ordinations”).

That’s why the article I’ve been reading is so refreshing. The author, Kathy Latour, interviews Harold G. Koenig, M.D., of the Center for Spirituality, Theology and Health at Duke University – a prostate-cancer survivor himself – as he describes a discussion group he co-facilitated called “Engaging the Spirit.” It was a place “where cancer patients and survivors explored spiritual and faith questions as they traveled the cancer journey.” Knowing his group was composed of people from a variety of faith traditions, Harold began each discussion with a simple question: “How’s your spirit?”

OK, that’s a workable generic opening question, but Harold’s point is that the discussion need not remain in that level: “I learned from those who took part that no matter how someone defines his or her faith, in a group of cancer survivors there exists a common quest to understand existential questions about life and death.” When that quest is pursued through religious community, there comes an awareness that “God has a purpose for them and is in control and they don’t have to be. This is where mental health comes from.” Such a strongly-held conviction, the article continues, “frees them and reminds them that their illness can result in ‘something good.’”

From his own experience as a survivor, Harold upholds the value of “a belief system that frames your diagnosis in the context of your life and what you believe happens after life. If you have no framework to place that in, all you have left is yourself and it isn't enough. You can't carry the full load – you weren't meant to.”

A great many recent research studies of spirituality and health, Harold maintains, conclude that people who follow a particular faith tradition “need and use fewer health care services because they are healthier, more likely to have intact families to care for them, and have greater social support.”

The Rev. Isabel Docampo, associate professor of supervised ministry at Perkins School of Theology, “says her fear and depression after facing surgery for life-threatening cancer of the salivary gland came not from a crisis of faith, but from the pain and sadness that she felt from the idea she might leave her 21-year-old son, Ben, and her husband of 18 months, Scott Somers, also an ordained minister.”

“The way I have always looked at life is that it is what it is,” Isabel reflects. “Life is a struggle and God has been there for all the blessings and all the bad stuff, and God is going to be here for the cancer.”

Amen to that.

I wouldn’t want to face cancer knowing that “all I have left is myself” – nor some individualized spirituality I’d made up out of whole cloth, either. One of the great strengths of submitting oneself to the discipline of a particular religious tradition is knowing it’s not all about me, nor will it ever be so.

Now, on to my Easter sermon...

October 15, 2009 - Thanks to Those Lighting the Night

A big "thank you" to all who are participating in Light the Night Walks tonight, and on other nights this Fall, in many different places! The Leukemia and Lymphoma Society sponsors these walks, which raise money for medical research and patient support programs.

It's a great organization - as is the Lymphoma Research Foundation, which has a more specialized mission focusing on lymphoma alone.

Here's a news report in which Saturday Night Live veteran Tina Fey speaks of her support for the cause:

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.

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.

November 17, 2008 - Do You Really Know How I'm Feeling?

This evening I attend the monthly blood cancers support group at The Wellness Community, sponsored by the Leukemia and Lymphoma Society. It’s our usual gathering of leukemia, lymphoma and myeloma survivors, plus a couple of new faces.

One statement that elicits a strong response from the group is the line, “I know just what you’re feeling.” One of the group members is sharing how he hates to hear that line from friends and family members who don’t themselves have cancer. Several other group members chime in: they don’t especially like hearing that statement, either.

Just talking about it brings one of the group members to tears. Whenever she hears that line, she takes it as a sign that the other person is minimizing her feelings.

“She’s right,” I think to myself. “That surely is an insensitive thing to say to someone with cancer.” But then, I remind myself that I do pastoral counseling as part of my work. Lots of people out there haven’t had the benefit of clinical counseling training. They just don’t get it. One of the first things our professors taught us in our seminary counseling courses was how phony and superficial that sort of statement sounds to the recipient.

Do we ever truly understand what another person is feeling? Even at our most empathetic, we only get partway there. In order to have a truly honest and open exchange, we need to allow room for listening to what the other is saying – especially about feelings that go beyond our own, limited experience.

No, we never fully know what another person is feeling. But we can listen. And that’s a great start.

October 24, 2008 - Communitarians, Arise

I’m on study leave for a few days, at our Adirondacks place. I’ve got quite a pile of accumulated books and journals to plow through.

The first thing I pick up to read is the September 9th issue of The Christian Century, whose news briefs section cites some political commentary from a column by E.J. Dionne. U.S. history, Dionne observes, is a back-and-forth tug of war between individualistic and communitarian impulses. The Century summarizes Dionne’s argument: “Dionne thinks there is a communitarian correction after a period of time when the individualistic metaphor of free markets reigned supreme. McCain’s notion of honor associated with the military is more communitarian than individualistic, and Obama’s slogan ‘Yes we can’ reflects deep communitarian commitments.”

My generation, the Baby Boomers, advanced communitarian ideals through the social upheavals of the 1960s, then settled in for a long period of individual striving. Many of us traded George McGovern for Ronald Reagan, backpacks and sandals for briefcases and wing-tips. We trekked from Woodstock to Wall Street.

Our parents’ generation, the “Greatest Generation,” traversed similar territory in their time. They cheerfully pitched in with Victory Gardens and rationing coupons during the World War II years, then traded in their communitarian values to raise nuclear families in the up-and-coming suburbs.

Ronald Reagan’s political revolution was an emphatic, angry resurgence of individualism. The recent near-collapse of the financial markets – brought on by the absence of government regulation – is the natural conclusion of the Great Communicator’s program. These developments have exposed the central economic dogma of Reaganism – that unfettered individual striving will result in “trickle-down” communal benefits – as a fraud. Greed has done what greed always does, left to itself. It has nearly wrecked our society. Now, as Dionne astutely observes, both presidential candidates are speaking communitarian language again. The one who is most adept at it – Obama – seems poised to win the election.

The other night, I attended the monthly blood cancer support group sponsored by the Leukemia and Lymphoma Society. What could be more communitarian than a bunch of people sitting around in a circle, sharing their stories and seeking to uphold one another? It would seem the way to health – for us as well as for our nation – lies in facing the beast together, rather than alone.

June 29, 2008 - Reflections of a Pancreatic Cancer Survivor

The other day I came across an article written by the Rev. Bill Forbes, a fellow Presbyterian minister. Bill’s a member of a highly exclusive club: pancreatic cancer survivors.

Bill used to be pastor of a large church in northern New Jersey. Shortly after leaving that position to become a vice-president of our denomination’s Board of Pensions, he was diagnosed with pancreatic cancer, and given just months to live. Now, more than two years later, he’s still with us. So far, he’s beating the odds.

The article Bill wrote appears in The Presbyterian Outlook – a small, independent magazine not widely known outside Presbyterian circles. His thoughts on survivorship are wise, and deserve to be more widely known.

Here are some things he says pancreatic cancer has taught him.

“Each and every day of life is a gift.”

“My effort to live a life and ministry of encouragement shapes my life today as never before.... Pancreatic cancer has assisted me, indeed it has endowed me, with a mandate to re-order my priorities. I don’t ‘sweat the small stuff’ nearly as much as I used to!”

“Prayer shapes and guides my life more than it did pre-diagnosis.”

When people learn that a friend has cancer, they often feel at a loss for words. Here’s what Bill suggests they say:

“When you know of someone who faces challenges – a serious illness, a family tragedy, a professional crisis, or a personal conundrum, don’t avoid them! Avoidance is tantamount to isolation. When someone faces the direst need, there is a tendency to feel forgotten. Questions such as ‘Why hasn’t your hair fallen out?’ or ‘What caused your situation?’ or ‘What kind of treatment will you have next?’ or ‘What is your prognosis?’ or ‘How are you handling the loss of your job, your spouse, your child, your... ?’ translates into ‘How does it feel to be without hope?’ And that’s not what those who suffer need.

Each of us has suffered or will suffer at some time in our lives. The Book of Job was a preview of what can happen to the most faithful and to the least faithful. Yet, the greatest gift we can offer to one another is encouragement – encouragement through spoken or written word, through deeds however small or gracious, through intercessory prayer and through the kindness of recognition: ‘I know this is a difficult time for you and I am holding you in daily prayer.’ God’s gift of life is truly amazing!”

Just one more example of how cancer changes a person.

June 20, 2008 - At the General Assembly

I’m in California, attending the Presby- terian Church (U.S.A.) General Assembly in San Jose, and staying with my brother Dave at his loft apartment near Berkeley.

The General Assembly is a great place for reunions with friends from around the church. In the exhibit area, I encounter Barb, a friend of ours from the days when I served as assistant dean and director of admissions at the University of Dubuque Theological Seminary in Iowa. I hadn’t seen nor talked to Barb for four years – since the last General Assembly I attended, actually.

Barb hasn’t heard of my cancer history, so I fill her in. She updates me on a health crisis she faced, as well – about the same time as I was undergoing chemo, it turns out. In her case, it was a kidney infection that turned into a blood infection that nearly killed her. It was touch and go for a while.

Barb is a spiritual director, and interested in healing ministries. She’s a leader in the Order of St. Luke, an ecumenical community of Christians who practice healing prayer. She tells me in some detail how, as she was lying in a hospital bed, drifting in and out of consciousness, she had a vision of descending into a sort of dark cavern, that she was sure would lead to her death. Then, she felt the power of countless prayers of believers who were praying for her. Those prayers were like strong arms grabbing hold of her and pulling her back up into the light.

She wasn’t afraid to die. She felt oddly indifferent to that possibility. I tell her I had something of the same feeling around the time of my initial diagnosis, when the thought hit me that my life could be significantly shorter. I felt sadness over experiences I would have missed, but as for death itself, “It is what it is, and if that’s what it is, so be it,” I tell her.

Barb acknowledges she felt much the same.

Barb was in her late 70s at the time she was going through this. I was 49. Yet, I don’t think age has a whole lot to do with it. Our experiences were similar.

We look at one another, slowly nodding our heads. We’ve been to the same far country, and the journey has changed us, in ways we’re still coming to understand.

And some think the General Assembly is only about ecclesiastical politics...

June 6, 2008 – Game Face

A June 1 article by Jan Hoffman in the New York Times (“When Thumbs Up Is No Comfort”) comments on the recent buzz concerning celebrity cancer patients Patrick Swayze (pancreatic cancer) and Ted Kennedy (brain cancer).

Swayze “made a pointedly public appearance at a Los Angeles Lakers game, looking strong-jawed and bright-eyed. He released a statement about his lively schedule and good response to therapy.”

Kennedy “left Massachusetts General Hospital... flashing crowds a thumbs up, competed in a sailing race. International headlines cheered, ‘Fight, Ted, Fight!’”

Celebrities with cancer, Hoffman goes on to observe, seem to feel they have to put on a brave, public face. The toothy smile and the thumbs-up gesture are obligatory. Hoffman quotes Barron H. Lerner, the physician author of When Illness Goes Public: Celebrity Patients and How We Look at Medicine: “If Ted Kennedy wanted to stick up his middle finger, that would be the more appropriate finger, but he’s doing what he is supposed to.”

Our celebrity-besotted culture looks to movie stars, athletes, politicians and others in the public eye to serve as iconic examples of steadfast, stoic endurance – when, really, these people are no better equipped for such a role than the rest of us. I’m sure Swayze and Kennedy had their private moments of anger and despair, before composing themselves and putting on their game face for the cameras.

To a certain extent, lots of us cancer survivors feel an obligation to put on our game face and keep it on. We feel that way whenever someone looks us in the eye and earnestly asks, “And how ARE you doing?” Not long after our first remission, or after we’ve reached some plateau in our treatment, we find we’ve become adept at delivering short, cheery but not very informative answers. Such an answer is easier to supply than the lengthy, more accurate summary of a complex medical condition.

When folks ask me that question, they’re plainly hoping for a smile and a thumbs-up, little more. In the interests of accuracy, I really ought to say something like this: “Well, I’m no longer in remission, but I’m experiencing no symptoms and my only treatment at the present time is ‘watch and wait.’ I’m feeling a bit frustrated the doctors can’t do more to cure me, but I’m doing my best to stick with the program. I’m finding it a bit hard to get on with my life while the cancer monkey’s still clinging resolutely to my back, but then I remind myself there are lots of promising, new treatments out there for my type of non-Hodgkin lymphoma – some available for immediate use and others soon to emerge from the research pipeline. This gives me hope, but even so, not a day goes by that I don’t say to myself, ‘I have cancer,’ and feel twinges of anger, anxiety and sorrow.”

I won’t dump that torrent of words on the casual inquirer, of course. It seems more important, both to my questioner and myself, that I keep up the game face.

Is that dishonest? I don’t think so. It’s just a survival technique.

Hoffman also touches on the subject of the military metaphor for cancer (something I’ve addressed in earlier blog entries). Citing Dr. Gary M. Reisfield, a palliative care specialist at the University of Florida, Jacksonville, Hoffman says: “Over the last 40 years, war has become the most common metaphor, with patients girding themselves against the enemy, doctors as generals, medicines as weapons. When the news broke about Senator Kennedy, he was ubiquitously described as a fighter. While the metaphor may be apt for some, said Dr. Reisfield, who has written about cancer metaphors, it may be a poor choice for others.

Metaphors don’t just describe reality, they create reality,” he said. “You think you have to fight this war, and people expect you to fight.” But many patients must balance arduous, often ineffective therapy with quality-of-life issues. The war metaphor, he said, places them in retreat, or as losing a battle, when, in fact, they may have made peace with their decisions.”

Ask me no questions, I’ll give you no game face.

May 30, 2008 - Snapshots in the Funeral Home

Today I stop by one of our local funeral homes, to attend visiting hours for Diane, a member of the Cancer Concern Center support group I used to attend. Diane was a multi-year survivor of breast cancer, but it caught up with her in the end.

I remember her as one of the most welcoming, affirming members of the group – even though she was one of the ones who found it hardest to stop calling me “Reverend,” and simply call me by my name. Some habits are hard to unlearn – especially for someone who grew up attending Catholic school, as she did. As a kid, she’d never have dreamed of calling a priest anything other than “Father,” and that formality carried over to a Protestant pastor like me.

I find I know only a few other people in the room – one other member of the support group, and a couple I know from some other contexts. I explain to Diane’s daughter how I knew her mother from the Cancer Concern Center, and always found her to be a positive, affirming presence. I don’t identify myself as a pastor, just as a member of the support group.

There’s no casket present – must have been a cremation. I walk over and take a gander at the photo collages. There are several of these, jam-packed with snapshots of a smiling Diane with family and friends I’ve never met.

I feel a little out of place. I knew Diane from such a narrow segment of her life – the support group – and from a time when she wasn’t feeling her best. These are images of a life that was rich and full, until cancer burst in and overturned the game board, scattering the playing-pieces.

Still, I felt I ought to come. Diane was a fellow member of the cancer underground. I want to honor her memory.

As I lean close to the displays of photos, I feel a twinge of survivor’s guilt. Why her and not me? There’s no answer to that question. Why ask why?

April 26, 2008 - Comfort and Strength

I’ve subscribed, this month, to a short-term “e-course” on Spirituality and Illness, through the website, SpiritualityAndPractice.com. There are brief, daily readings that arrive by e-mail, and an online message board participants can use to communicate with one another. Yesterday’s topic was “Find a Source of Comfort.” I was struck by the following excerpt from a book, No Enemies Within: A Creative Process for Discovering What’s Right About What’s Wrong, by Dawna Markova (Conari Press, 1994):

“When I was in the hospital, the one person whose presence I welcomed was a woman who came to sweep the floors with a large push broom. She was the only one who didn't stick things in, take things out, or ask stupid questions. For a few minutes each night, this immense Jamaican woman rested her broom against the wall and sank her body into the turquoise plastic chair in my room. All I heard was the sound of her breath in and out, in and out. It was comforting in a strange and simple way. My own breathing calmed. Of the fifty or so people that made contact with me in any given day, she was the only one who wasn't trying to change me.

One night she reached out and put her hand on the top of my shoulder. I'm not usually comfortable with casual touch, but her hand felt so natural being there. It happened to be one of the few places in my body that didn't hurt. I could have sworn she was saying two words with each breath, one on the inhale, one on the exhale: ‘As... Is... As... Is...’

On her next visit, she looked at me. No evaluation, no trying to figure me out. She just looked and saw me. Then she said simply, ‘You're more than the sickness in that body.’ I was pretty doped up, so I wasn't sure I understood her; but my mind was just too thick to ask questions.

I kept mumbling those words to myself throughout the following day, "I'm more than the sickness in this body. I'm more than the suffering in this body." I remember her voice clearly. It was rich, deep, full, like maple syrup in the spring...”

I’ve been thinking about that word, “comfort,” ever since. It’s built from the Latin word fortis, which means “strong.” To comfort others is, literally, to make them strong. It is to build a fort around them, so they may withstand whatever threat may come.

It’s what that nameless Jamaican cleaner did for the woman telling the story. It’s significant to me that she was the only one who came into that hospital room without a specific, healing task to perform (at least, as “healing” is typically defined by the medical professions). Yet, this woman - an angel, really - had a way of healing by her very presence.

We’ve pretty much lost that sense of the word, in our culture. “Comfortable” has degenerated into “comfy” – as in a comfy chair. When we speak of “creature comforts,” we usually mean something that makes us softer, rather than stronger.

It calls to mind these famous words of the prophet Isaiah. They mark a continental divide in that biblical book, as the prophet changes from confronting a sinful people to comforting an exiled people:

“Comfort, O comfort my people, says your God.
Speak tenderly to Jerusalem, and cry to her
that she has served her term, that her penalty is paid,
that she has received from the Lord’s hand double for all her sins.” (Isaiah 40:1)

“Comfort” calls to mind, also, an old Fanny Crosby gospel hymn – one I haven’t thought of for a very long time – “All the Way My Savior Leads Me”:

“All the way my Savior leads me –
What Have I to ask beside?
Can I doubt His tender mercy,
Who through life has been my guide?

Heavenly peace, divinest comfort,
Here by faith in Him to dwell!
For I know whate’er befall me,
Jesus doeth all things well.”

This is the sort of comfort that goes far beyond simply saying “There, there” to a crying child. “Heavenly peace, divinest comfort” gives people of faith the strength to go on.

March 15, 2008 - The Bucket List

Yesterday, Claire and I went to see the film, The Bucket List, at our local second-run movie theater. We don't get out to many movies in theaters, and this is one we'd meant to see on its first time around, but missed. We're glad the Beach Cinema in Bradley Beach gave us a second chance.

In case you haven't seen it or read about it, the film is about billionaire executive Edward Cole (Jack Nicholson) and blue-collar mechanic Carter Chambers (Morgan Freeman). These two men are sharing a hospital room on a cancer ward when they both learn they have fewer than six months to live. They decide to stop behaving as though they are already dead. Bankrolled by Edward's substantial fortune, they check out of the hospital and live their lives to the fullest in the short time they have left. Living life to the fullest, for Edward, involves field trips like skydiving, visiting the Pyramids and getting a tattoo – macho activities that set the ol' adrenaline a-pumping. Carter's ideas are more modest and more values-driven – "witness something truly majestic," "help a complete stranger" – although he enthusiastically joins in on the race-car driving and touring the world on a private jet. All these are detailed on a scrap of paper from a yellow legal pad they call the "bucket list": the things they want to do before they kick the bucket, which they then scratch off the list, one by one.

It's a buddy movie for the cancer set. In any other circumstances, these two men would have been unlikely to become friends, due to differences in background, wealth, temperament and religious beliefs. Yet, they do become friends. The thing they have in common is cancer, and an awareness that their days are numbered.

The film's plot has been savaged by some critics for being contrived, but the fans evidently loved it. It was the number-one film in theaters for a time. Surely, a large part of its appeal is the chemistry between these two accomplished actors, but I think it also has to do with the way the film fearlessly takes on big, philosophical questions like the meaning of life, death and religious faith. The Bucket List doesn't supply a lot of answers, but the journey is a fine ride.

I was especially impressed by the role religious faith plays in the film. Edward, the over-the-hill hedonist, is a frank and rather prickly agnostic, declaring that the sum total of his belief is "We live, we die and the wheels on the bus go round and round." Carter gently declares his faith in God, although he admits it's not based on empirical evidence. That's what faith is all about, he tells his new friend. To him, faith is clearly not a truth distilled from empirical analysis. It's not something you deduce. It's something you do.

Does Edward get the message? The film hints that he does, leading him to a sort of personal redemption, through repairing some long-sundered family relationships (I won't say more than that, so as not to be a plot-spoiler).

I've never been as sick as the two men in the film, but the scenes of them learning of their cancer diagnosis did strike a chord. News like that sure does pick you up, turn you around and put you back down in a different place.

Everyone should see this film. It's a gem.