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.

Why I Do It

Sometimes I wonder why I write this blog - why I started it in the first place; why I kept it up during some very difficult days, when I hardly felt up to it; why I keep doing it, more than 5 years after my diagnosis and more than 4 years into watch-and-wait so-called "treatment."

An answer has turned up in Britain's Guardian newspaper, as a psychologist speculates on why people write illness blogs. Here, a fellow cancer blogger, Sue Eckstein, quotes Dr. Tom Farsides:

"I'm just one of many hundreds of people who blog about their illness or trauma, and, according to Dr Tom Farsides of Sussex University, this is not surprising: 'Writing is an effective way of processing and coming to terms with challenging and potentially traumatic events,' he says. 'But blogging is more than the mere act of writing. It also fosters senses of both control and social connection, each of which is crucial for psychological wellbeing.'"

Oh, yeah. That's why.

October 9, 2010 - Comic Relief from The Onion

OK, this one's a bit out of the ordinary for my blog, but I can't resist posting a link to this "news" story from The Onion, the internet satirical newspaper. It's called "Teen With Cancer Vows It Won't Keep Her From Being Mean, Moody Little S**t."

(Sorry for the profanity, both in the headline and in the article, but you'll see how it makes literary sense in this case.)

The article gave me a good chuckle, but it also points out how we who have cancer are who we are. The disease strikes randomly, without regard to personal virtue (or lack thereof).

It's also a sly send-up of all the adulatory talk that goes on about people with cancer. When you get the disease, you find that people are a little more inclined than usual to say complimentary things about you.

Was anyone ever lauded for approaching their so-called "battle" with cancer like a total weenie? I'm sure many have taken precisely that approach. But they never say anything about that when they're hanging the medal around your neck at the Relay For Life.

Don't get me wrong. Cancer can be transformative. I believe it has been in my case, and mostly for the better (although - true confessions time - four and a half years later, I could stand to ditch the procrastinating, devil-may-care approach to personal financial management that I fell into during my chemo-treatment days).

For all the times we survivors may joke about "playing the cancer card," the diagnosis doesn't give us a free pass for treating others with disrespect.

I suppose the experience of dealing with cancer does lead some of us to rethink, maybe even reform, our lives. Others, maybe less so.

Are we somehow obliged to approach our disease like the opportunity for transformation it just may turn out to be? I don't think so. It's an individual thing.

We all do well to try to avoid judging others in that regard. Those who want to take the weenie approach have every right to do so. And they probably still deserve a medal around their neck.

Deep down, I'm enough of a Calvinist to believe that we're all sinners, and that chemo and radiation have little effect on that particular malady.

That cure lies elsewhere.

August 16, 2010 - The Big C

This evening, I take a look at Showtime’s new “dramedy” on cancer – The Big C, starring Laura Linney. We don’t have Showtime on our cable contract, but I happen to notice that the full first episode is available as a preview on Showtime’s website.

I presume the 30-minute video I saw was the whole episode. There was a little disclaimer about it having been edited for online viewing, but I take that to mean that the curse words were muted (which they were).

Laura plays Cathy, a Minneapolis high-school teacher who’s just learned she’s got stage 4 melanoma. She declines treatment, and decides not to tell anyone, not even her family. The first episode is all about her bouncing from one wildly inappropriate, self-destructive behavior to another: impulsively deciding to have a swimming pool dug in her front yard, without getting the necessary permits; treating an obnoxious summer-school student with a savage cruelty the writers likely intend to be funny, but isn’t; telling off the cranky, reclusive old lady who lives across the street; overindulging in goopy desserts, liquor and even a cigarette she confiscated from a student.

Yes, I know diagnosis is a terrifying, world-shaking time – and everyone deserves to be cut a little slack in the midst of it – but no one is that crazy.

Linney does a spectacular role of acting the part, but it’s the script that’s over the top. This is a shame, because we cancer survivors could really use an actor of her caliber telling our story. She gets it right on the gut level, in a way that makes viewers identify with her, but she’s shackled by that unrealistic script.



The scene showing her interaction with her doctor is particularly problematic. She tells someone she’s going off to the dermatologist, but this guy is doing more with cancer treatment than any dermatologist I’ve ever heard of. I suppose, in retrospect, he’s really meant to be her oncologist, and the dermatologist story is a little cover-up on her part, but the script never reveals that.

Even as an oncologist, though, he’s unrealistic. There’s a flashback showing Cathy in his office, viewing her tumor on an x-ray film. It’s clearly an x-ray, not a CT or PET Scan.

He also admits to Cathy that she's his "first." First what? Cancer patient? (Not likely, given his years of specialist training.) His first terminal patient? (Again, not likely he missed that experience, if he's been an oncology resident). His first patient to decline all treatment from the get-go? (Maybe a little less unlikely, but not much.) His first melanoma patient? (If that's true, Cathy would be well advised to run as fast as she can, putting as much distance between herself and this rookie as possible.)

So, the writer and director would have us believe that a sensitive and intelligent professional in her late 40s or early 50s, with everything to live for, is going to chuck it all, declining treatment and keeping her diagnosis secret from everyone in her life, based on something she saw on an x-ray film in her doctor’s office? No follow-up tests. No second opinion. Not even a careful weighing of the treatment options, before coming to that momentous decision.

“I’ve always loved my hair,” Cathy tells her doctor, explaining why she’s ignoring his medical advice and declining treatment. “I cry every time I get it cut.”

Now, maybe that’s a feeble attempt at a joke on her part, but if that’s not the case (and there’s no clear indication it is), then the Minneapolis Board of Education is saddled with an astoundingly airheaded high-school history teacher.

The scene is both medically and psychologically inaccurate, and that’s a real missed opportunity – especially since what happens in her doctor’s office is the premise on which the whole series is based.

What, Showtime was too stingy to spring for a decent medical advisor?

Washington Post reviewer Hank Stuever makes a similar point:

“I’ve known people whose loved ones avoided treatment and kept cancer a secret until it was too late. Cathy’s decision is ‘The Big C’s’ most difficult hurdle – a wildly selfish and passive-aggressive act that is difficult to find funny. It also doesn’t seem believable in Cathy’s case – she just seems too smart and articulate to deliberately withhold something like this, unless she’s just being mean. Whatever her reasons, Cathy’s secret cancer does provide ‘The Big C’ a doorway to a fascinating story arc, in which the people in her life come across as unfailingly more selfish than she’s attempting to be.”

While this first episode does a not-so-good job of portraying the personal and medical aspects of a newly-diagnosed cancer patient’s life, it does depict one thing accurately: our society’s fear of cancer. The series, of course, is really about death, and what it means to go on living in its shadow with strength and dignity. It’s significant that the disease chosen as the vehicle for this philosophical and psychological exploration is cancer. The problem is that not all cancers are alike, and not even a metastasized, stage 4 melanoma is a reason to decide to forgo all treatment, especially for a newly-diagnosed patient.

Those quibbles aside, I do recommend the series, based on what I saw. I’d watch it myself if I had Showtime. Guess I’ll have to rent the subsequent episodes on DVD, once they’re available.

June 6, 2010 - Our Most Elusive Possession

Great column a couple days ago, from New York Times columnist Nicholas Kristof. Instead of gallivanting around Africa or someplace crusading against injustice, as he often is, his June 4th column is very personal.

That’s because he’s had a cancer scare: diagnosis of a kidney tumor 90% likely to be malignant, then surgery – and then, against the odds, a biopsy revealing he’s in the lucky 10%. The tumor was benign.

Still – and understandably – Nicholas had a scare, that led him (as cancer has led so many of us) to examine his life a little more closely. Here’s the result:

“This is trite but also so, so true: A brush with mortality turns out to be the best way to appreciate how blue the sky is, how sensuous grass feels underfoot, how melodious kids' voices are. Even teenagers' voices. A friend and colleague, David E. Sanger, who conquered cancer a decade ago, says, "No matter how bad a day you're having, you say to yourself: `I've had worse....’

I don't mean to wax lyrical about the joys of tumors. But maybe the most elusive possession is contentment with what we have. There's no better way to attain that than a glimpse of our mortality.”

Preach it, brother!

A few verses from the First Letter to Timothy come to mind:

"Of course, there is great gain in godliness combined with contentment; for we brought nothing into the world, so that we can take nothing out of it; but if we have food and clothing, we will be content with these."

- 1 Timothy 6:6-8

March 29, 2010 - Survivors' Tips from Dr. Laura Liberman

When I attended the Lymphoma Research Foundation’s national meeting in New York last fall, one of the most helpful presentations I heard was by Dr. Laura Liberman, a radiologist on the staff of the Memorial Sloan-Kettering Cancer Center. Dr. Liberman spoke not so much as a physician, but as a cancer survivor. She herself has been successfully treated for lymphoma.

She evidently gave the same talk again at a more recent event at MSKCC, and they’ve posted an online video of it. It’s just 30 minutes long, and is well worth it.

Laura’s experience was, like mine, one of tables being turned. As a pastor, I’ve visited with many cancer patients, and have tried to give them what help I could. She and I both found it disorienting, at first, to assume the role of a patient. In fact, the title of Laura’s book is I Signed As the Doctor – the first several times she signed consent forms for medical procedures, she made the mistake of signing on the line marked “Doctor,” rather than “Patient.”

Here are Dr. Laura Liberman’s cancer survival tips, a baker’s dozen:

1. Reach out to your friends.
Some people can’t deal with your cancer (it’s not in their nature), but many will be grateful for the opportunity to step up and help.

2. It’s OK to cry, but try to keep it to 20 minutes a day or less.
This is no joke. An oncology nurse gave her this advice. Laura actually found it helpful to try to fit her crying into that period of time (20 minutes at a stretch, four 5-minute crying jags, whatever worked). I didn't do much crying myself, being the typical male in our culture, but I appreciate the importance of giving ourselves permission to feel sad.

3. Ask people to pray for you.
Laura’s of the opinion that prayer, from any and all religious traditions, is a good thing. If nothing else, you may receive a sense of positive energy coming toward you, and it allows friends want to do something to help you who may have no other way to do so.

4. Find doctors you can trust.
You don’t want Dr. House from TV, she says. You want someone who’s empathetic as well as technically skilled

5. Take it bird by bird.
A literary reference to Anne Lamott’s book of that title. Lamott tells the story of how her brother was frustrated at the magnitude of his grade-school report assignment on “The Birds of North America.” Their father gave him the sage advice to “take it bird by bird.” So, too, with cancer. The big picture can feel overwhelming, especially at the outset. Take it one medical procedure at a time.

6. Be sensitive to your family.
Be honest with your kids, but don’t overwhelm them with more information than they can handle. Make sure your kids know you will still be there for them.

7. Be your own advocate.
Do your own research. Bring someone with you on doctor’s visits – not only to help you advocate for yourself, and also to listen for details you will probably miss. Laura suggests “bringing your own anesthesia” – not the big stuff you need an anesthesiologist for, of course, but she sings the praises of something called Gebauer ethyl chloride, a topical application you can get at the pharmacy with a prescription. The stuff numbs the skin; it’s what they spray on kids’ skinned knuckles in the emergency room. Emla Cream, she says, is also useful, though you have to apply it a half-hour before. Not every doctor, she says, is alert to the value of preventing minor pain, like that of a needle insertion, with such topical preparations. Bring the stuff with you, though, and the doctor’s unlikely to object.

8. Find silver linings (it’s an opportunity to get new hats!).
Laura says she indulged herself, when she was losing her hair, by buying herself an embarrassing number of fashionable new hats. People want to say “You look great,” she points out – but when they can’t, you can always ask them, “Do you like my hat?”

9. Discover your inner Zen.
By this, she means whatever it is that brings you to a place of inner peace. There’s an awful lot of waiting associated with being a cancer patient, and all that downtime can lead to excessive worrying. One friend advised her to pretend each doctor’s visit is a trip to the airport – if you don’t have to wait that long, you’ll be pleased. Get an iPod, she also advises – so you can listen to music during all those waiting experiences. Putting songs onto your iPod is something teenagers can do for you.

10. Keep your sense of humor.
Nothing about cancer is a joke, but if you can focus on things that make you laugh, that’s a good thing.

11. Play the cancer card.
Every once in a while, it helps to mention that you have cancer. Sometimes people will give you special consideration (she’s got a good story about this on the video about getting a cab in New York).

12. Savor celebrations. It’s not all about the cancer!
Celebrations are important at any time of life, but especially when you’re sick. “The way you make life good is by incorporating good stuff into it.”

13. Use your experience to help others.
Give back, pay it forward, or whatever you like to call it. This can help you feel you’re going through this experience for a reason

Good advice. Check out the video!

March 6, 2010 - Going to a Different Place

Yesterday I spent three hours in the dentist’s chair – or, more specifically, the endodontist’s chair. It was the third session I’ve had in the past week or so, with one more coming on Monday.

I’m having a root canal done on a molar that’s developed an abscess. The tooth’s had a crown on it for years, so the doctor’s had to drill a hole down through the top of the crown and leave it open all week, to relieve pressure on the abscess and allow it to drain.

Dr. Donald Fahringer, the endodontist, is fabulous. He’s obviously highly skilled at his craft, and he’s very understanding of his patients. Each session begins with 4 (count ‘em), 4 shots of novocaine – slam, bam, one after the other. No messing around. None of this, “I’ll give you a little spritz of novocaine, and you raise your hand if it starts hurting.”

While it’s thankfully been a pain-free experience, it’s by no means been a comfortable experience. Sitting with your mouth held open for hours by a stainless-steel torture instrument topped with a latex dental dam, while somebody slowly rasps away at the inside of your tooth with tiny files, then peers inside your mouth with a microscope before rasping some more, ain’t exactly my idea of entertainment.

Fortunately, I’ve had a little experience with this sort of thing. Yes, I’ve had root canals before – but, it’s been many years, and none seemed to be as extensive a project as this one. The recent experiences that seem most relevant are my two bone-marrow biopsies - one in December, 2005 and the other in July, 2007.

On both those occasions, I instinctively knew I had to take myself to a different place – to be present, as I needed to, when the doctor needed to ask a question or to instruct me to turn a certain way, but otherwise I drifted off to a different plane.

During the bone-marrow biopsies, I randomly chose an object across the room to serve as a focal point, and focused my eyes on it, as I somehow burrowed down deep within my own consciousness. I can’t tell you how I did it, exactly, but I did it. I was there, but not there.

This time – with Dr. Fahringer’s permission – I brought my iPod into the chair, set it to pick songs randomly, and stuck the earbuds in as soon as he got started. I could hear and feel him doing things inside my mouth, unpleasant things, but I felt detached from the experience. I could just about hear his voice, over the music, when he asked me to turn my head toward him or open wider, but then, once I’d complied, I settled back into my own private la-la-land.

It’s one of the little lessons the cancer experience has taught me – not to mention the experiences I’ve had with contemplative prayer. Pain is real, discomfort is real, but up to a certain point, we have the power to influence the way those negative forces affect us.

All we have to do is go to a different place.

January 28, 2010 - When Positive Thinking Isn't Enough

One of the hardest things to do, in ministry, is to stand by people who are going through hard times: not trying to change the situation, but just being with them, accepting things as they are.

An invaluable lesson I learned, years ago, in my clinical counseling training in seminary, is that sometimes you can’t fix it. Sure, there are some counseling situations in which an easy answer – be it a scriptural citation or a word of practical advice – can make a world of difference. But, not every situation is like that. Sometimes the only thing you can do is to be there – accompanying people through their difficulties, sometimes even to the edge of the grave.

It’s one of the reasons (among many) why I have such admiration for my wife, Claire - a minister who works as bereavement coordinator for a hospice program. Accompanying people in just this sort of way is what she does all the time. When she was a hospice chaplain, she worked directly with dying patients. Now, she specializes in accompanying family members through their days of mourning.

Claire’s grown used to a certain awed response she gets from people she meets for the first time. They often say something like, “More power to you! I could never do a job like that,” or, “That must be so hard! How do you keep doing it, year after year?”

Frequently, she gets another sort of response: “I think hospice programs are wonderful. The hospice team was such a help to us when my mother was dying!” A person who says something like that has come to appreciate the value of standing by those who are suffering. It’s like the famous first line from Reinhold Niebuhr’s famous Serenity Prayer:

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

In my sermon this past Sunday, I spoke about a certain tendency toward magical thinking that can be a detriment in situations of serious difficulty, medical or otherwise. I was inspired by reading an insightful book, Bright-sided: How the Relentless Promotion of Positive Thinking Has Undermined America, by Barbara Ehrenreich.

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Ehrenreich has gotten a lot of press because of the forthright way in which she takes on the 200-pound gorilla of the self-help world: positive thinking. Her point is that our culture so unquestioningly considers positive thinking to be a good thing, that in situations – like the final stages of hospice care – in which it’s no longer appropriate, people just don’t know what to do. They feel abandoned, adrift, without the familiar life preserver of positive thinking.

Many of us think that, in a tough situation, we’ve got only two choices: think positively, or give up altogether. My point in Sunday’s sermon is that, while positive thinking is often a good thing, there are some situations in which it crosses the line into magical thinking – which is not. Some things that happen to us in life are simply bad things, and there’s no getting around it. It’s one thing to cultivate a positive outlook generally, but it’s quite another to believe we have an obligation to think positive thoughts all the time – and that, if we don’t, we’re somehow putting ourselves at risk.

Sadly, some cancer patients get precisely that message from those around them. Some feel guilty, beating themselves up because they can’t keep the sunny side up all the time. If their disease progresses, they feel irrationally responsible for failing to stoke the positive-thinking furnace.

A new illustrated article on Beliefnet.com, “In Praise of Thinking Realistically: When Positive Thinking Isn’t Working,” by Lori Hope, speaks to this same theme.

The positive-thinking movement is very often an ally of Christianity, but there’s a point at which the two part ways. Bottom-line, the Christian prescription for spiritual health is not positive thinking, but rather, repentance and the forgiveness of sins. As the Gospel-writer Mark sums up the essence of Jesus’ message:

“Jesus came to Galilee, proclaiming the good news of God, and saying, ‘The time is fulfilled, and the kingdom of God has come near; repent, and believe in the good news.’” [Mark 1:14-15]

If we’re constantly trying to push everything but positive thoughts out of our minds, we’ll never be able to recognize sin in our lives, because we’re so afraid of the negative thoughts that go with it. Without a recognition of sin, there can be no confession. Without confession, there can be no forgiveness. And, without forgiveness, there can be no experience of grace.

I ended my sermon on Sunday by telling a familiar story from the classic Broadway show, The Music Man. It’s about the con man, “Professor” Harold Hill, who travels around selling band instruments to schools, promising he’ll stick around to teach the children how to play – but he never does. He always hops the first train out of town as soon as the money’s in his pocket. In the Midwestern town of River City, though, he falls in love with Marian the librarian, so he’s got to think of something. Harold’s problem is, he knows nothing about music. He’s not a professor of anything, except shady deals.

What he does is tell the children they can learn to play their new band instruments using what he calls “The Think Method.” All they have to do is think of the melody he tells them to play, recalling it over and over in their minds. When they pick up their instruments, he promises, they’ll be able to play it perfectly.

Well, the day of the first band concert comes, and Harold’s ready for his slippery scheme to fall apart. The children pick up their instruments and start to play. The sound that emerges is one of the most awful things you’ve ever heard – everything you’d expect from a teaching strategy so ill-conceived as “The Think Method.”

Wonder of wonders, a miracle occurs. The parents of River City are so pleased to see their children tooting away on the band instruments, they completely ignore the fact that there’s no discernible melody. Professor Hill’s reputation is saved, and he settles down in River City to marry his beloved Marian.

Positive thinking won’t teach us how to play the trombone, any more than it will guarantee we’ll beat cancer. The lesson of The Music Man, though, goes beyond the concrete task of producing the right musical notes at the proper tempo. It’s a lesson about grace and love and unconditional acceptance of children by their parents. Professor Hill’s brand of magical thinking was a complete dud, but the magic of love proved far stronger.

There is no greater magic in the world than this. It’s the love of God, that Christians believe is experienced uniquely in Jesus Christ. We believe that love was demonstrated for us on the cross of Calvary, and is given to us as an unconditional gift. It comes to us in good times and in bad, in sunshine and in storm.

“Thanks be to God for this indescribable gift!”
– 2 Corinthians 9:15

December 17, 2009 - I Wonder As I Wander

On of the beloved songs of the upcoming Christmas season is “I Wonder As I Wander.” The song was written by a musicologist named John Jacob Niles, based on a fragment of folk music he discovered.

According to the Wikipedia article on the carol, in 1933 Niles was traveling through the Appalachian region of North Carolina, looking for traditional tunes. He was attending a fund-raising meeting held by an evangelistic group who’d been run out of town by the police (I’m sure there must be an interesting back-story behind that!). In his unpublished autobiography, Niles tells of how he first heard the song:

“A girl had stepped out to the edge of the little platform attached to the automobile. She began to sing. Her clothes were unbelievable dirty and ragged, and she, too, was unwashed. Her ash-blond hair hung down in long skeins.... But, best of all, she was beautiful, and in her untutored way, she could sing. She smiled as she sang, smiled rather sadly, and sang only a single line of a song.”

Niles was enchanted, and asked the girl to sing the line again. He offered her a quarter to do so, and she gladly complied (this was 1933, the midst of the Great Depression: folks earned money any way they could). Seven times he asked the girl to sing it, giving her a quarter each time. Seven quarters later – a dollar seventy-five, not a bad price in the 1930s – he had enough of a sense of where he was going with his composition. What he had was, in his own words, “three lines of verse, a garbled fragment of melodic material – and a magnificent idea.”

I think you’ll agree: a dollar seventy-five (in 1933 dollars) was not a bad price to pay for a hauntingly beautiful melody that’s become a Christmas standard.

“I Wonder As I Wander” is in a minor key. More often than not, hymns are written in a major key. Those hymns are bright, joyful, triumphant. The minor-key hymns, by contrast, are quieter, more introspective, more reflective. Some are even somber.

We need them both. One of life’s great lessons, for cancer survivors or for anyone else, is that not all of life is lived in a major key. “Into each life some rain must fall,” goes the hoary old cliché. When we discover joy amidst even the rain, when we can learn to sing praise even in a minor key, we’ve got it made.

“I wonder as I wander out under the sky
How Jesus the Savior did come for to die
For poor orn'ry people like you and like I;
I wonder as I wander out under the sky.”

December 1, 2009 - The Glad Game

Many people have heard the name “Pollyanna.” Her full name is Pollyanna Whittier, and she’s the title character in a classic series of children’s novels. The first one was published in 1913 by Eleanor H. Porter.

In the grim little New England town where the orphan Pollyanna goes to live with her aunt, she teaches others to play a little game her late father taught her. She calls it “The Glad Game.” It has one simple rule: find something to be happy about in every situation, no matter how dark or desperate.

The game’s origins go back to one particular Christmas. Digging deep in the charity barrel, hoping to find a doll for her present, Pollyanna finds only a pair of crutches. A poor kid without a toy at Christmas? What could be more pathetic than that? Pollyanna’s father teaches her, then, how The Glad Game works: be happy you found the crutches, he tells her, because “we don’t need ‘em!”



The Wikipedia article on Pollyanna gives a few examples of how adept the little waif becomes at playing The Glad Game:

“When Aunt Polly puts her in a stuffy attic room without carpets or pictures, she exults at the beautiful view from the high window; when she tries to ‘punish’ her niece for being late to dinner by sentencing her to a meal of bread and milk in the kitchen with the servant, Nancy, Pollyanna thanks her rapturously because she likes bread and milk, and she likes Nancy.”

Pollyanna becomes an evangelist for The Glad Game, bringing a treacly sweetness to her little town, until further misfortune in her own life forces her to practice what she preaches:

“Eventually, however, even Pollyanna’s robust optimism is put to the test when she is struck down by a motorcar while crossing a street and loses the use of her legs. At first she doesn’t realize the seriousness of her situation, but her spirits plummet when she accidentally overhears an eminent specialist say that she’ll never walk again. After that, she lies in bed, unable to find anything to be glad about. Then the townspeople begin calling at Aunt Polly’s house, eager to let Pollyanna know how much her encouragement has improved their lives; and Pollyanna decides she can still be glad that she has legs. The novel ends with Aunt Polly marrying her former lover Dr. Chilton and Pollyanna being sent to a hospital where she learns to walk again and is able to appreciate the use of her legs far more as a result of being temporarily disabled.”

We cancer survivors hear a lot about the importance of maintaining a positive attitude. In many ways, that advice is but a warmed-over version of Pollyanna’s Glad Game. The problem is, no real person can be as relentless in playing the game as the fictional Pollyanna. Feelings of sadness and dejection sometimes present themselves, and that’s OK. They come with the territory.

If we take the “think positive” advice too seriously, we can end up denying the existence of those negative thoughts – which are only natural, after all. Sure, maintaining a positive attitude is important, but that doesn’t mean we can never give ourselves permission to feel anger, or sadness, or frustration or any of the other negative emotions that come from this kind of protracted struggle.

There’s a lot of emphasis, in some cancer-treatment circles, on mental exercises like meditation and visualization as practical ways of calming the spirit. These practices are of proven usefulness and have their place, but it’s possible to take them too far. Some of the more enthusiastic promoters of these techniques claim they stimulate the immune system, actually unleashing the body’s healing energies – as though they were a treatment modality in themselves. It’s easy to see where such exaggerated claims can lead: to the belief that, unless we devote enough time each day to pulling ourselves up by our own endorphins, we’re giving up altogether.

Dr. Jimmie C. Holland, a psychologist at Memorial Sloan-Kettering Cancer Center, touches on this in her book, The Human Side of Cancer. She tells of a patient of hers named Jane, who had been successfully treated for breast cancer, but who felt troubled by the fact that she sometimes worried about a relapse. Could her worries in fact be a self-fulfilling prophecy, Jane wondered? This caused her to worry even more. The doctor comments:

“Jane was echoing a refrain I often hear from people with cancer: the notion that feeling sad, scared, upset, or angry is unacceptable and that emotions can somehow make your tumor grow. And the sense that if the person is not in control on the emotional plane all the time, the battle against the disease will be lost. Of course, patients like Jane didn’t come up with this notion on their own. It's everywhere in our culture: in popular books and tabloids on every newsstand, on talk shows, in TV movies.

For most patients, cancer is the most difficult and frightening experience they have ever encountered. All this hype claiming that if you don’t have a positive attitude and that if you get depressed you are making your tumor grow faster invalidates people’s natural and understandable reactions to a threat to their lives. That’s what I mean by the tyranny of positive thinking.”

Sometimes we just don’t feel like playing The Glad Game. Sometimes, we shouldn’t have to.

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.

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.

May 28, 2009 - On Not Jumping the Gun

Today I read an online article about prostate cancer – specifically, how some men who get regular PSA tests may end up getting overtreated for the disease.

It’s a situation that’s parallel to my NHL, because of the similar, watch-and-wait treatment protocol.

Man gets PSA test. Test detects a small, almost insignificant presence of cancer. Knowing most prostate cancers are slow-growing, doctor recommends watchful waiting. Patient, who’s just heard the word “cancer” for the first time in a medical diagnosis, flips out, imploring the doctor get rid of the cancer, whatever it takes. Under pressure, doctor initiates treatment – despite the possibility of debilitating side effects and the knowledge that the treatment is likely to be no more effective now than later.

It’s all because of the patient’s panicky reaction to the word, “cancer.”

I know. It’s only human to respond that way. I did, myself, when I was first diagnosed. We’ve been taught to think of cancer as a killer, that must be excised from the body instantly, no matter how difficult that process may be.

You can see this in the way some people use the word “cancer” as metaphor. If someone speaks of “a cancer on the organization,” or something similar, it means the offending member must be drummed out of the corps, post-haste. That’s what we do with cancers, right?

Sometimes, but not always. Not when it’s a slow-growing cancer – like most prostate cancers, or my indolent NHL.

I’m away at a church conference this week, the national meeting of the Presbyterian Association of Stated Clerks. Today, at the breakfast table in the conference center dining hall, a colleague I haven’t seen in a while asks me how I’m doing. I explain the watch-and-wait thing, and she at first assumes I’m in remission. No, I’m not in remission, I correct her. It’s been 3 years since my treatment, but my remission only lasted about 8 months. The cancer’s been back ever since then, but we’ve yet to treat it, because it’s still too small to treat.

She gives me a quizzical look that reveals she clearly doesn’t get it.

I explain to her that my cancer is one that doesn’t – in fact, shouldn’t – be treated immediately (and that this is a tough idea for any of us to wrap our minds around). Doing so will just deplete the number of implements in the doctors’ treatment toolbox, tools that may be needed later when the cancer does get big enough to treat.

After my lengthy explanation, my friend does get it – but, I rather suspect she goes away thinking I’ve got some superhuman reserves of psychological endurance, being able to get up and walk around each day, as I do, with the knowledge there’s untreated cancer inside me.

It’s not that big a deal, though. It really isn’t. Once you get used to the idea that you’ve got an indolent cancer, and understand what that sort of cancer really is, you can function rather well. Sure, there’s a constant, low-level sense of unease about the future, but it is low-level.

You have cancer. You live with it. Somehow, with a little help from your friends, and your God, you get by.

As long as you don’t jump the gun.

April 26, 2009 - Libation

Responding to my April 20th entry, a reader named Christine writes:

“My cancer has progressed to the point where I am on my last leg of this journey. I was wondering if you could direct me to what the Bible says about facing death. In essence, what are your thoughts on dealing with grief and sorrow? My journey has been four years and as I approach the end, surprisingly I find that my emotional and spiritual struggle have not diminished but intensified.”

Wow. I had to think about that one for several days, before attempting an answer. It’s not that I’ve never had to supply this sort of counsel before; it’s just that Christine poses her question so bluntly. Most people whom I visit in their final days raise the question obliquely, if at all. Whether they ask the question directly or not, I typically respond by sharing some of the great scripture passages that witness to God’s reliable presence.

For example, there’s Psalm 139, in which the psalmist imagines himself journeying to the very edges of the known world, only to find God still there beside him:

“If I take the wings of the morning and settle at the farthest limits of the sea,
even there your hand shall lead me, and your right hand shall hold me fast.” (Psalm 139:9-10)

For those who struggle with fatigue, cancer-related or otherwise, there’s always Isaiah 40:28-31, that promises:

“Those who wait for the Lord shall renew their strength, they shall mount up with wings like eagles, they shall run and not be weary, they shall walk and not faint.” (Isaiah 40:31)

Those of a philosophical bent may find some comfort in the timeless contemplations of “the Teacher” who wrote the book of Ecclesiastes. In these verses – immortalized for my generation by Pete Seeger’s folk anthem, “Turn, Turn, Turn” – he recalls how, in life, there is a time for everything, even a time to die:

“For everything there is a season, and a time for every matter under heaven:
a time to be born, and a time to die;
a time to plant, and a time to pluck up what is planted;
a time to kill, and a time to heal;
a time to break down, and a time to build up;
a time to weep, and a time to laugh;
a time to mourn, and a time to dance...” (Ecclesiastes 3:1-4)

THE BYRDS - Turn ! Turn ! Turn !
by danadi33

Certain psalms, like Psalm 69, pull no punches when it comes to voicing the honest cry of human anguish. Perhaps, Christine, you’ve felt like this in recent days:

“Save me, O God, for the waters have come up to my neck.
I sink in deep mire, where there is no foothold; I have come into deep waters, and the flood sweeps over me.
I am weary with my crying; my throat is parched. My eyes grow dim with waiting for my God.” (Psalm 69:1-3)

So, what does it mean to speak of God saving us, in a time of serious illness – perhaps even illness unto death? Some may be tempted to blithely drop a pollyanna catch-phrase, like “Expect a miracle!” Yet, this is unrealistic, maybe even deceptive. We all know miraculous reversals like this – the sort that cause doctors to scratch their heads and say, “I don’t know what happened, there’s no medical explanation for the way that tumor just disappeared” – are rare indeed. Besides, even in those fortunate cases where a terminal illness reverses itself, the patient is still going to die of something, eventually. No, that sort of miracle merely buys a little time, that’s all.

No, the only ultimate consolation comes from promises such as Jesus’ words in John 11:25-26:
“I am the resurrection and the life. Those who believe in me, even though they die, will live, and everyone who lives and believes in me will never die.”

Seeking to describe the life to come, Paul resorts to a variety of metaphors. In 2 Corinthians 4:16-5:1, he likens this present life of ours to a tent – a temporary dwelling, slated to be replaced by something more permanent:

“So we do not lose heart. Even though our outer nature is wasting away, our inner nature is being renewed day by day. For this slight momentary affliction is preparing us for an eternal weight of glory beyond all measure, because we look not at what can be seen but at what cannot be seen; for what can be seen is temporary, but what cannot be seen is eternal. For we know that if the earthly tent we live in is destroyed, we have a building from God, a house not made with hands, eternal in the heavens.”

In 1 Corinthians 15, Paul uses a different, organic metaphor, that of a seed planted in the ground – one I’ve cited just upstream, in my April 14th entry.

At the end of the day, though, all these are just metaphors. Such poetry, lofty as it may be, captures the emotion, but inevitably falls short on details – for, who can chart with certainty lands no human has visited, save on a one-way journey? (Jesus, of course, being the notable exception, and he wasn’t talking – not on that subject, anyway.)

In the course of my pastoral ministry, I’ve spoken with more than a few people who’ve had near-death experiences. There are more of these people around than you may think. Most are pretty quiet about it. They’re hesitant to speak of such experiences, for fear of being misunderstood – but, if you give them a chance, they’ll speak in hushed tones, eyes brimming with tears, of bright visions no words can capture. I feel incredibly privileged to have heard a few of these firsthand testimonies.

We can’t make too much of these subjective experiences, though. They’re elusive, dreamlike – merely the shadow of a suggestion of what the next life may be like. Still, I take some comfort, personally, in observing that, whatever these soul-travelers experienced, there was no terror in it: only a sense of comfort and welcome and peace.

Reflecting on his own impending death, the pseudonymous author of 2 Timothy speaks of his hopes and fears using the common coin of his own culture. He portrays his life as a “libation” – a sacred offering of wine, to be poured out onto the ground, as the Greeks and Roman were wont to do:

“As for me, I am already being poured out as a libation, and the time of my departure has come. I have fought the good fight, I have finished the race, I have kept the faith. From now on there is reserved for me the crown of righteousness, which the Lord, the righteous judge, will give to me on that day, and not only to me but also to all who have longed for his appearing.” (2 Timothy 4:6-8)

Back in my chemo days – when I was feeling sick as a dog and far from certain Dr. Lerner’s promises of a likely remission would ever come to pass – I wondered if my own life was turning out to be just such a libation.

It’s a powerful image, even though we have to work a bit to translate it into 21st Century terms. Then, as now, it defies reason to upend a perfectly good cup of wine and pour its contents out upon the ground: but sometimes that primitive calculus is the only response that makes sense in face of the absurdity we call “death.”

Surely, we protest, there’s got to be a better way. Surely, God – if the Bible’s descriptions of divine power are true – has the ability to arrange things in some other way for us.

The hard fact is, God chooses not to exercise that ability. Sooner or later, our life-force is bound to run out in rivulets, like that libation-offering, poured upon some unimaginably ancient block of stone.

A libation. That’s what we’ll be, one day.

Poured out. An offering to a God who (we can only hope) is, as the scriptures teach, “gracious and merciful, slow to anger and abounding in steadfast love” (Psalm 145:8).

If that is so, we will one day be able to affirm, with Paul, that:

“...in all these things we are more than conquerors through him who loved us. For I am convinced that neither death, nor life, nor angels, nor rulers, nor things present, nor things to come, nor powers, nor height, nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord.” (Romans 8:38-39)

That’s the sort of thing I’d be inclined to say to you, Christine, by way of summarizing the Christian witness about life and death.

On a more personal note, I’d also like to encourage you to try to step back and get some perspective on the faith-struggles you’re going through right now. A certain amount of angst is to be expected. Strong emotion is understandably part of the experience. Cancer stinks. So does an early death. There’s no way to sugar-coat such hard realities.

I wouldn’t be at all surprised if you’re feeling angry, as well. Just read through some of those biblical psalms of lament, and you’ll quickly realize you’re not alone in this.

Doubt can be part of the psychic landscape, as well. (Remember, even Jesus went through his own crisis of faith in the Garden of Gethsemane.) You may worry, at times, that you’re losing touch with all the beliefs you once held dear, but that’s simply what dying is like. It’s profoundly disturbing and disorienting (Hollywood cliches about falling gently back on the pillow notwithstanding).

There’s nothing more disturbing nor disorienting in all of life. If - as the Christian faith teaches - death is actually rebirth into a new way of living, then wouldn’t it be reasonable to expect a bit of birth trauma? Just try to keep your eyes upon Jesus, the one whom the letter to the Hebrews calls “the pioneer and perfecter of our faith” (Hebrews 12:2).

May God be with you.

April 8, 2009 - Michael J. Fox

Michael J. Fox was the guest on Monday’s The Daily Show with Jon Stewart. I watched it a day later on our DVR.

Fox, of course, is a Parkinson’s Disease survivor. I found him inspiring. Take a look and see for yourself:

The Daily Show With Jon Stewart	M - Th 11p / 10c
Michael J. Fox
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I was struck by the fact that Michael kept his 1991 diagnosis secret for seven years. Undoubtedly, that was a tough time for him. He was one of the hottest talents in Hollywood, but he was leading a secret life as a chronic-disease patient. The knowledge of his slowly-worsening situation was hanging over his head.

Fox tells how he went a little crazy during those years – drinking too much, that sort of thing. But then, he came to a point where he grew comfortable with his diagnosis. He stopped fighting it. He learned to go with the flow. I wonder if that coincided with his going public with his medical situation?

It’s always tough to live a lie. Little by little, it tears you up inside. I’ve never regretted going public with my cancer diagnosis, as soon as I was sure that’s what it was.

I could relate to these words of his: “Once you accept it and fix it in space and say, ‘This is this and it’s not anything else and it’s not going to go away any time soon, and you're going to have to deal with it’ then you open up to all the stuff that’s around it and say, ‘Wow, this gives me an opportunity to help people out, this gives me an opportunity to look at things in a way that I might not have looked at them before...’”

Fox even gave voice to the cancer survivor’s mantra, at one point: “It is what it is.” How many times have I heard people with cancer say that?

Note it, and move on.

There’s a kind of strength that comes from facing our life-situation honestly, and trying to live as resolutely as we can in the present. It does little good to pine for our pre-diagnosis days, nor does it help us to obsess about the future. The art of living with a chronic disease lies in living in the now.

Accept it. Fix it in space, as Fox says. Admit, “This is this and it’s not anything else and it’s not going to go away.” Then, go searching for the blessings that are still around: and there are many.

Thanks, Michael. You’re a great example for all of us.