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 In his unpublished autobiography, Niles tells of how he first heard the song: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 15, 2009 - Expectancy

This time of year, we Christians find ourselves – if we can stop our frenetic holiday preparations for a moment and be still – in the season of expectant waiting known as Advent.

It’s a tough season for most folks to wrap their minds around. Anyone who pays attention to the liturgical year feels oddly suspended between the now and the not-yet. This isn’t helped by the fact that the recommended biblical texts for Advent are of two distinct kinds. On the one hand, there are apocalyptic passages that warn of the final judgment and the return of Christ to judge the earth. On the other, we’re handed kinder, gentler stories like the Annunciation: the angel Gabriel’s visit to Mary, announcing Jesus’ impending birth.

It can be tough, during Advent, to figure out what, exactly, we’re meant to be waiting for. Are we waiting for Christ to come crashing in and judge this mad, mixed-up world for what it is? Or, are we imaginatively placing ourselves into the Christmas story, waiting for him to be born in Bethlehem again in our hearts and minds?

I have a new appreciation for the ambiguities of waiting, ever since entering my extended, watch-and-wait treatment mode. Of course, unlike the waiting associated with Advent, the thing I’m waiting for is not good. I’d just as soon have my lymphoma remain in couch-potato mode as long as possible. Yet, I do also live my life attuned to subtle signs that could develop.

Every three months or so, I go for another scan: a moistened finger held up to test the wind. Today’s the day: another CT scan at Ocean Medical Center.

Unlike the classic prayer of Christians, “Even so, Lord Jesus, quickly come,” I’m very happy to keep on waiting.

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.

November 28, 2009 - Passing the 500 Milestone

Yesterday, as I posted my most recent blog entry, I passed a milestone. It was my 500th blog entry.

It’s hard to believe. In the 4 years or so since I’ve been writing this blog, chronicling my experience as a cancer survivor, I’ve somehow found that much to say.

Early on, the blog was all about giving a blow-by-blow account of my medical treatments. Later, as I went into, then out of, remission, then entered the extended period of watchful waiting I’m presently in, I’ve had less to share about my medical condition. That’s a good thing, because no news is good news. I’ve naturally moved over into commenting on some other topics I now look on differently because I’m a cancer survivor – particularly the healthcare-funding debate in this country, and general survivorship issues.

I’d like to thank you, my readers, for hanging in there with me through all this. I plan to continue posting here as long as folks are finding the blog helpful to their own life journeys. Please do use the “Comments” feature to let me know what you’re thinking about my postings. I’m still getting 50-60 visitors a day, so I figure I must still be addressing some real needs.

Grace and peace and life abundant to all.

Carl

November 27, 2009 - Thanksgiving Flu

“Flu-like symp- toms.” That’s what I’ve got – as is only appro- priate, since what I’ve got does, in fact, seem to be the flu.

I was down and out all day yesterday, Thanksgiving Day. We had a houseful of friends and relatives, but I remained sequestered upstairs, in our bedroom, tracing with my shuffling feet a well-beaten path to the bathroom.

I’d thought I might don a breathing mask and venture downstairs briefly to greet our guests (the mask would have been for their protection, not mine). I didn’t feel up to even that.

“Flu-like symptoms” is how doctors often describe the side-effects of chemotherapy. I realize, now, how apropos that is. The queasiness, the weakness, the muscle aches – it’s all come back to me. It’s like I was right in the middle of chemo again (except for the hair loss, of course, and the metallic taste in the back of my mouth).

Since concluding my chemo in May of 2006, I’ve been pretty healthy. I’ve been lucky enough to avoid the flu for quite a number of years. This year, I got an H1N1 vaccination (the lymphoma qualifies me for the high-risk group), but I procrastinated on getting the seasonal flu vaccination. By the time I got serious about it, the vaccine was no longer available. Maybe what I’ve got now is the seasonal flu, or maybe it’s H1N1 despite the vaccination, but it really doesn’t matter. It’s the flu, and that’s all I need to know.

I suppose that, in describing chemo side-effects as similar to flu symptoms, the doctors are trying to put patients at ease. Most everyone’s had the flu at one time or another, and most everyone gets over it. I’d quite forgotten, though, how nasty the flu can be.

I’m on about Day 3 at the moment, so I’m sure I’ll be feeling better in another couple days. It’s been a little blast from the past, taking me back to my chemo days, and that’s just a little unnerving.

This, too, shall pass.

October 31, 2009 - A Scary Thought for Halloween

Here’s a scary thought for Halloween: We’ve all got cancer.

Read this creepy little item, from an October 26th New York Times article:

“Cancer cells and precancerous cells are so common that nearly everyone by middle age or old age is riddled with them, said Thea Tlsty, a professor of pathology at the University of California, San Francisco. That was discovered in autopsy studies of people who died of other causes, with no idea that they had cancer cells or precancerous cells. They did not have large tumors or symptoms of cancer. ‘The really interesting question,’ Dr. Tlsty said, ‘is not so much why do we get cancer as why don’t we get cancer?’”

A thought along these same lines is this one, that I read in a National Geographic article some time ago, and that’s bugged me ever since (in more ways than one). Our bodies are also riddled with microscopic animal hitchhikers: lice, dust mites and the like.

They feed off things like our discarded skin cells. They’re so tiny, we’re unaware of their presence. They cause us no trouble we’re aware of. But they’re here. Our bodies are their home.

Not only that, our digestive systems mightily depend upon bacteria, who make their home in the human gut. Millions upon millions of these microorganisms come into life, grow to maturity and die, sustained by the same foods that sustain us. Many of these bacteria actually help us, because they scarf down food substances we can’t digest, and excrete them in forms that we can. (Mmm, mmm, good!) One of the reasons doctors are so wary of over-prescribing antibiotics these days is that these nuclear weapons of the subatomic world indiscriminately blast out all kinds of bacteria, the beneficial as well as the harmful. Here’s a picture of lactobacillus acidophilus, which is one of the good guys:

Our awareness of our own bodies is pretty much limited to the macro level, the things our own senses can take in. When doctors take on a foe like cancer, they have to contend on the microscopic level. Cancer cells have to number in the millions before they even show up on most tests and scans. To form themselves into an actual tumor, something like an enlarged lymph node that can be felt or seen without special techniques or equipment, there have to be a great many more of them than that.

On Halloween, or any other time, it’s not so much the things that go bump in the night we ought to be scared of. It’s the things that silently swish by, submerged within the salty, microscopic sea in which our cells swim, that can cause lasting harm.

There’s some good news arising out of that infinitesimally tiny perspective, though. According to the same Times article, some cancer researchers are changing the way they look at the disease. Once upon a time, they viewed cancer’s progress as inexorably linear: once it appears anywhere, it can only grow larger. The only questions for the doctors, following that way of thinking, are “How fast?” “In what direction?” and “How can we stop it?”

Now, it turns out, a lot of cancers don’t grow much at all. Some even grow for a time, then reverse course and disappear into oblivion. Summarizing the views of Dr. Barnett Kramer of the National Institutes of Health, the Times article goes on to explain:

“The image was ‘an arrow that moved in one direction.’ But now, he added, it is becoming increasingly clear that cancers require more than mutations to progress. They need the cooperation of surrounding cells and even, he said, ‘the whole organism, the person,’ whose immune system or hormone levels, for example, can squelch or fuel a tumor. Cancer, Dr. Kramer said, is a dynamic process.”

There are many ways in which my cancer is like that. The indolent lymphoma I have is just hanging around for now, doing not much of anything. We’re watching it, and we’re waiting.

Hope we wait a long time.

Now, here's a little Halloween fun:

October 19, 2009 - The Gloves Are Off

Today, following a Facebook link, I come across this video of the President speaking on health care reform. The gloves are off. “No drama” Obama is stepping up at last, to identify the heart of the problem with our health-care funding system. It’s the insurance companies:



The insurance companies are richer than rich. They’re powerful. They channel huge amounts of lobbying money and campaign contributions to Capitol Hill.

There’s one thing they can’t change or influence, though. As the President says in this message, a large majority of the American people is in favor of change, and elected him in order to bring it about.

The coming weeks and months will tell whether America is still a democracy, or whether it has become a plutocracy – a system in which money talks so loudly that even our democratically-elected representatives dance to its command.

Keep at it, Mr. President. A great many of us out here are behind you all the way.

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:

October 3, 2009 - Imagine a World Without Cancer

There are lots of things that divide us in this world: language, culture, ideology, nationalism, religion. One thing in which we are absolutely united – or ought to be – is in facing the threat of cancer.

Cancer knows no national boundaries, no economic class, no cultural barrier. It’s an equal-opportunity threat. Grasp that reality, and somehow all those other rifts within the human community seem a little less important.

Cancer, as this little video points out, is the common enemy:

September 25, 2009 - A Survivor's Testimony: Never Give Up

Here’s a video containing the testimony of Dr. Samuel Gruber, a longtime lymphoma survivor:

The Survivors Club - Doc Gruber - Lymphoma Survivor

There’s a lesson for us here about the importance of being our own advocate: of keeping up with the medical literature (as best we can, anyway), and talking with our doctors about the things we read.

There’s also a comforting truth in what Dr. Gruber says about the rapid pace of research in lymphoma treatments. The longer we hang on, the more new treatments will become available.

Reason for hope!

September 18, 2009 - Worse than Drunk Driving and Homicide Combined

It's worse than drunk driving.

It's worse than homicide.

It's worse than drunk driving and homicide combined.

What is it that causes more Americans to die each year than either of these two fearful scourges?

Lack of medical insurance.

So says a new study released by Harvard Medical School. If these numbers are correct - and with a Harvard cachet, most would conclude they probably are - our country's healthcare crisis is worse than nearly all of us imagined.

It's a stark number: 45,000 deaths a year. That's how many American deaths the Harvard experts attribute to lack of medical insurance. One death every 12 minutes.

About a year ago, one of our daughter's high-school classmates was struck and nearly killed by a pickup truck, while crossing the street in a designated crosswalk. She survived, but with brain damage, blindness in one eye and mobility issues that could result in lifelong disability (we continue to be hopeful for recovery). A friend who was walking beside her was knocked off balance but escaped virtually unscathed. The truck's driver - who tried to flee the scene but was later apprehended - was reportedly very, very drunk.

The community was outraged. Their outreach to the family, both in terms of fund-raising for medical expenses and simple human kindness, has been awe-inspiring. (The family does have medical insurance, by the way; it just wasn't enough. What private-insurance policy would be, for such devastatingly high bills?)

Yet, where is the outrage when another family's house goes into foreclosure because of unpaid medical bills due to lack of insurance - or even due to a policy that looked good on paper but came up lacking, once Big Insurance's casuistic cost-cutters had sharpened their knives?

Where is the outrage when a young mother, just told she has Stage IV breast cancer, admits she felt several lumps months before, but delayed going to the doctor while she was between jobs? She waited too long. The cancer had advanced.

She knew, she confided in me later, that if she received a diagnosis while still unemployed and without insurance, her treatment for a pre-existing condition would probably never be funded. Never.

Knowing breast-cancer treatment can drag on intermittently for years, she did a grim mental calculation and concluded it was worth a roll of the dice. She lost. Yet, why should a human being, a child of God, ever have to roll such dice at all?

These aren't mere statistics. These are people I know personally. What's more, such stories could belong to any of us.

Any of us. (Unless we happen to be super-rich.)

I'm not an activist by temperament. I have political convictions, but on most issues I try to keep them to myself, not wanting to limit the reach of my ministry. Yet, I'm a cancer survivor who's looked into many a careworn face on the far side of a doctor's waiting room. I'm also a pastor who's held many whispered consultations with family members at the foot of hospital beds. I'm aware of how huge this problem is, how deep its personal bite can be. The Harvard statistics confirm what I've long known, on a gut level, to be true. Some - maybe even some of my parishioners - may wish I'd remain above the political fray on this issue. But, I can't. Lives are literally at stake.

It's not that those who oppose increased government involvement in healthcare funding are bad people. They have their own convictions, their own ideologies. Some honestly believe, as a matter of principle, that the private sector can do medical insurance better than the government can (despite compelling indications that Medicare beats the average private-insurance policy hands down, on most metrics). Yet, when it comes to the large number of Americans who have reasonably good insurance and who've never faced a major health crisis, they have no idea. They simply have no idea how close they or their loved ones are to the abyss. Each and every day.

As my daughter's friend has discovered, it's as close as one second in time when stepping out into a crosswalk.

This morning I was reading an eye-opening article, "No Country for Sick Men," in the latest issue of Newsweek. The author, T.R. Reid, makes a number of telling comments:

"'You have to understand something basic about Canadians. Canadians don't mind waiting for elective care all that much, so long as the rich Canadian and the poor Canadian have to wait about the same amount of time.'

In that last sentence, [Saskatchewan Medical Society official Marcus] Davies set forth the national ethic of health care in his country: medicine is not a commodity to be sold to the highest bidder, but a right that must be distributed equitably to one and all. In short, the Canadians have built a health-care system that neatly fits the Canadian character: ferociously egalitarian, but thrifty at the same time."...

(It's a question of fundamental values, in other words.)

"But the most important influence of national culture can be seen in the most basic question facing any country's health-care system: who is covered?

On this fundamental issue, the United States is the odd man out among the world's advanced, free-market democracies. All the other industrialized democracies guarantee health care for everybody - young or old, sick or well, rich or poor, native or immigrant. The U.S.A., the world's richest and most powerful nation, is the only advanced country that has never made a commitment to provide medical care to everyone who needs it."...

(Are we really so narcissistic in this country that we think we can be so right, and so many other nations so wrong?)

"Those Americans who die or go broke because they happened to get sick represent a basic moral decision our country has made. All the other rich countries have made a different decision: they cover everybody. A French physician, Dr. Valerie Newman, explained it this way: 'You Americans say that everybody is equal,' she said. 'But this is not so. Some are beautiful, some aren't. Some are brilliant, some aren't. But when we get sick - then, yes: everybody is equal. That is something we can deal with on an equal basis. This rule seems so basic to the French: we should all have the same access to care when it comes to life and death.'"...

(Isn't that just common sense?)

"That principle seems so obvious to people in Europe, Canada, and the East Asian democracies that health officials asked me over and over to explain why it isn't obvious to Americans as well. 'The formula is so simple: health care for everybody, paid for by everybody,' a deputy health minister in Sweden told me. 'You Americans are so clever. Why haven't you figured that out?'"...

(Oh, to see ourselves as others see us!)

"In the U.S.... some people have access to just about everything doctors and hospitals can provide. But others can't even get in the door (until they are sick enough to need emergency care). That amounts to rationing care by wealth. This seems natural to Americans; to the rest of the developed world, it looks immoral."

Yes, there are legal, economic and political aspects to America's bitter healthcare debate. Yet, I'm becoming increasingly convinced that the line of argument that dwarfs all these others is the moral one.

As a preacher, that's my department. And that's why I refuse to keep silent.

September 16, 2009 - Leaving on a Jet Plane

Sad news today, about the death of Mary Travers (of Peter, Paul and Mary fame). A blood cancer was the culprit – in this case, leukemia, with which Mary had been living for some years now.

From an MSNBC.com news article:

“Travers had undergone a successful bone marrow transplant to treat her leukemia and was able to return to performing after that.

‘It was like a miracle,’ Travers told The Associated Press in 2006. ‘I’m just feeling fabulous. What's incredible is someone has given your life back. I’m out in the garden today. This time last year I was looking out a window at a hospital.’ She also said she told the marrow donor ‘how incredibly grateful I was.’

But by mid-2009, [Peter] Yarrow told WTOP radio in Washington that her condition had worsened again and he thought she would no longer be able to perform.”

The last time I saw the trio in concert was a couple years ago, at the Great Auditorium in Ocean Grove, here in New Jersey. I suppose it was not long after her transplant. Mary leaned heavily on a cane, but as she opened her mouth to sing, she was a force of nature.

She’s leaving. Not on a jet plane (would that it were so), but on a far longer journey.

Mary’s powerful voice for peace, justice, love, hope – and, yes, faith – will be missed.

Go with God, Troubadour.

Leaving on a jet plane
by Lancer_MX

September 15, 2009 - Natural Born Killers

They’re calling it a “master switch” that can turn on the immune system’s ability to fight cancer.

Maybe that description’s overblown, or maybe it’s not, but British scientists have surely made a breakthrough by identifying a gene that stimulates the body’s production of NK, or “natural killer” cells, a type of white blood cell.

From an article describing the new development:

“Infusions of natural killer cells donated from volunteers are already given to some cancer patients. However, because they come from another person, they are not a complete match and so do not work as well.

The discovery of the 'master-switch' – a gene called E4bp4 that causes ‘blank’ stem cells to turn into natural killer cells – paves the way for a drug to boost the patient’s own stock of the cells.

(Natural killer cells, highlighted in red, in the spleen of a virus-infected mouse. To find where this picture came from, click here.)

Researcher Hugh Brady, of Imperial College London, said: ‘The natural killer cell was like the Cinderella of the white blood cells, we didn’t know very much about them.

We knew a little bit about how they work but we didn’t know where they came from.

We stumbled on this when researching childhood leukaemia. We thought the gene was involved in that. It turns it probably isn’t but it has a very important role in the immune system.

With a bit of serendipity we have found the key to the pathway that gives rise to natural killer cells.’”

A lot more research is needed, says Dr. Brady, before any medication that stimulates natural-killer cell growth is ready for prime time. Scientists aren’t even 100% sure that NK cells always have a beneficial function:

“Now finally, we will be able to find out if the progression of these diseases is impeded or aided by the removal of natural killer cells from the equation.

This will solve the often-debated question of whether NK cells are always the ‘good guys’, or if in certain circumstances they cause more harm than good.’”

Good guys? Bad guys? It’s a cell-eat-cell world out there in the microscopic regions of the human body, it would seem.

Let’s just hope the scientists are onto a whole lot of new good guys with this one.

September 14, 2009 - We're Number 37

My friend and fellow pastor Rob Elder shared this video on Facebook. Some guy's written this satirical ditty reporting that the World Health Organization has ranked the United States #37 out of all the world's nations in providing health care to its citizens:



From the WHO's press release on the subject:

"The U.S. health system spends a higher portion of its gross domestic product than any other country but ranks 37 out of 191 countries according to its performance, the report finds. The United Kingdom, which spends just six percent of GDP on health services, ranks 18th. Several small countries – San Marino, Andorra, Malta and Singapore are rated close behind second-placed Italy."

We can do better.

Yes, we can.

September 14, 2009 - I Stand Corrected

Friday I had a long-scheduled appointment with Dr. Lerner, following my most recent CT and PET scans. I didn’t feel at all anxious going into this appointment. One of the nurses had phoned me the day after the scan with a message from the doctor, saying there was no significant change. I’m still out of remission, but the cancer hasn’t grown perceptibly since it first reappeared. It’s the sort of ambiguous news I’m used to getting from this decidedly indolent cancer.

The news could have been better – “no cancer” – but that’s highly unlikely, from what I’ve been told about this form of NHL. It could also, of course, have been worse – “the cancer has grown.”

I’m at neither extreme. I’m living with ambiguity, learning to take comfort where I can amidst the uncertainty of watch-and-wait.

There was one peculiarity the nurse had mentioned. “Did you have a fall?” she asked.

“No, what makes you think that?”

“Well,” she replied, "the PET scan shows some hot spots near your right ribs. That’s consistent with a recent injury, or it could be just an inaccuracy in the test.”

Dr. Lerner explained, when I saw him, that the PET scan shows three spots on my ribs. If I don’t recall getting a jolt in the ribs, he said, it’s probably nothing significant – a false positive. This is because the more accurate CT scan shows nothing out of the ordinary. That’s the one we trust for a detailed diagnosis.

As for the thyroid nodule, the follow-up ultrasound revealed the nodule had grown no bigger. If that proved to be the case, my endocrinologist Dr. Sher had told me some months ago, it probably means the nodule is benign (as he suspected anyway, from observing it).

That’s the problem with all this high-tech medicine. These machines are so powerful, they sometimes reveal non-problems we never knew we had.

I did learn something new from Dr. Lerner this time around: a fine point about the grading of my disease. I’ve been telling people – and writing in this blog – that, after chemo, my grading changed from “diffuse mixed large and small cell” to “follicular lymphoma.” When I described my cancer as follicular lymphoma, Dr. Lerner corrected me. Scanning the pathology report from my most recent biopsy, he told me I don’t have that grade. What I have is “diffuse small cleaved cell” lymphoma.

They're similar. Both are B-cell. Both are indolent types. Yet, when my cells are slathered onto the microscope slide, they don’t display the follicles that give follicular lymphoma its name. (Here's a sample of diffuse small cleaved cell lymphoma I found on the Internet...)

Not being schooled in the ways of these tiny cells, I can’t imagine how that difference is important. Surely it will have some influence on my treatment plan, when the time for further treatment finally comes. The details are understood only by people who peer through microscopes.

In a Google search, I came up with a page that describes the difference:

“We have investigated the cellular origin and/or pathogenesis of follicular small cleaved cell lymphoma (FSCCL), diffuse small cleaved cell lymphoma (DSCCL) and intermediate lymphocytic lymphoma/lymphocytic lymphoma of intermediate differentiation (ILL/IDL) based on a series of immunologic and molecular genetic (bcl-1, bcl-2 and bcl-3 genes) studies. These studies have led to the conclusion that the cellular origin or pathogenesis of ILL/IDL and DSCCL is distinctly different from that of FSCCL: (1) FSCCL is a neoplastic counterpart of follicular center cells (FCC) of secondary follicles because of the presence of CD10 and bcl-2 gene rearrangement and the absence of CD5 and bcl-1 gene rearrangement; (2) DSCCL and ILL/IDL are a neoplastic counterpart of mantle zone (MZ) B lymphocytes because of the presence of CD5 and bcl-1 gene rearrangement and absence of CD10 and bcl-2 gene rearrangement; and (3) FSCCL scarcely develops into DSCCL, and the previously proposed concept that DSCCL represents a diffuse counterpart of FSCCL does not hold good.“

Well, that’s clear as mud, isn’t it?

I’m just glad my DSCCL is indolent, like the FSCCL I formerly thought I had. Keep your siesta going, cancer cells. I can wait.

September 8, 2009 - Turned Toward Blessing

Today I come across a blog entry from last April by Dana Jennings, a New York Times reporter being treated for aggressive prostate cancer. Dana is Jewish, and writes eloquently on the intersection of faith and cancer. Here’s an excerpt:

“One of our cultural verities about serious illness is that it often challenges our faith. But for me, if anything, having cancer has only deepened it, heightened it.

I have spent the past year in the dark ark of cancer, and there is no question that I have become a new man. I’ve been granted a wisdom that only arrives at the rugged confluence of middle age and mortality. And I know, soul deep, that I have not been cut open, radiated, and tried physically and spiritually so that I can merely survive, become a cancer wraith. Since my diagnosis – after shaking off the initial shock – I have kept asking myself, in the context of my belief: What can this cancer teach me?

The most surprising thing I’ve learned is that cancer can be turned toward blessing. Through the simple fact of me telling my cancer stories on this blog, many of you readers, in turn, have told your own stories. And that mutual sharing of our tales has changed my life for the good. Rabbi Abraham Joshua Heschel said, 'Life is not meaningful, unless it is serving an end beyond itself, unless it is of value to someone else.'”

I like Dana's concept of cancer being “turned toward blessing.” I won’t ever be able to consider cancer a good thing, but our miraculous God can wring blessings out of even the darkest episodes of life.

In a remarkable way we, too, can be turned toward blessing. When we are able at last to make the move from cursing our fate to blessing others by our actions, we know the seeds of healing are taking root in our lives.

September 7, 2009 - Happy With Your Health Insurance?

Today I heard a phrase I’ve been hearing a lot lately in news reports about the health-insurance debate. It’s the concept of people who are “happy with their health insurance.”

Are you one of those satisfied consumers? Are you truly happy with your health insurance?

You’d think there must be an awful lot of happy Americans out there, the way Washington politicians have been spreading that phrase around, thick as manure.

I suppose there may actually be a few pleased policyholders out there. The nature of insurance, after all, is that some people need it more than others. Those who don’t submit many claims tend to be happy with their coverage. They take comfort in holding that wallet card. They feel protected.

Even if their medical safety-net is spun from pure fantasy, they feel protected. Maybe even happy.

The true test comes with hard times. I wonder how many who are happy with their health insurance have chronic medical conditions? These are the people who deal with the real world of medical insurance, not fantasy.

I’m fortunate enough to be doubly covered. The Blue Cross/Blue Shield insurance I receive through the Presbyterian Church is pretty decent. The secondary Qual-Care spousal coverage we purchase at group rates through Claire’s employer, Meridian Health, is a valuable back-up. It takes a big bite out of my 20% Blue-Cross/Blue Shield co-pay – which, when it comes to things like PET scans, can add up to a pretty penny.

Even so, I’m not happy with my health insurance. I’m not happy because I know I have to watch both insurance companies like a hawk. I know their profits are dependent on their denying customers’ claims. I know they reward their employees when they find reasons to deny or reduce payments – if not with outright bonuses, then with favorable performance reviews. I know there are so many middlemen and -women involved in the whole unwieldy process, so many paper forms, faxes and e-mails flying around, that there’s a huge potential for error. Just one omitted or misplaced pre-certification, one out-of-network service booked in error, and I could be left holding the bag for big bucks.

That unwieldy insurance bureaucracy – so complex, even the doctors’ professional claims-processors can’t make sense of it – adds as much as 30%, by some reckonings, to the cost of my medical care. Ultimately, that’s the cost of employing an army of people to push paper and tap on computer keys, not to mention squeezing quarterly dividends out of the system to keep insurance companies’ stockholders happy. It has nothing to do with the quality of my medical care.

I’m not happy with that.

Then, when I imagine the prospect of pursuing cancer testing and treatment without any medical insurance, I’m even less happy – not so much for my own sake, as for the sake of my at-risk neighbors who must do exactly that. I’m not happy being the beneficiary of a system that values stockholders more than sick people.

Dr. Len Lichtenfeld, a physician, has it right, in an August 8, 2009 blog entry on the American Cancer Society website:

“We have too many instances-and too many bankruptcies-where ‘satisfied’ people suddenly found themselves not so ‘satisfied.’ I am willing to bet that you (and me) have no idea whether or not your insurance will be a facilitator or a barrier to your care if you or someone you love becomes seriously ill with a disease like cancer. You just don’t know.

So don’t stand there and rail against your Congressman or Senator because you are ‘happy’ with your health insurance. I wonder how many of you have had a serious, prolonged illness in your family. If your experiences have been positive, terrific. But don’t discount that many others have not been so fortunate.”

Those yahoos shouting their Senators down at town hall meetings don’t seem to realize that this issue transcends any individual right to happiness. Are you happy with your health insurance, Mr. Redface Shoutington? Too bad. Your happiness can’t come at the expense of your neighbor, who worked just as hard as you did over the years, but who was either self-employed or whose employer wasn’t as beneficent as yours when it came to health benefits.

It’s a moral issue. Never before, in human history, has care of the sick been viewed as sick people’s own problem. It’s always been a community responsibility.

Some anthropologists, I’m told, date the rise of the human race according to the first skeleton they ever dug up that had a broken bone someone else had set.

We’re all in this together. That’s where true happiness comes from.

September 6, 2009 - Positively a Survivor

Today I come across a helpful website for cancer survivors from “across the pond.” It’s the MacMillan/CancerBackup website – evidently, a recent merger of two cancer-support sites.

There’s a lot of helpful stuff here about feelings and relationships, and how they impact the lives of cancer survivors. One item I found myself nodding along with addresses the whole subject of “being positive” – that common advice others often extend to us. Some of us may find ourselves thinking we ought to keep a positive attitude all the time, and that this is somehow essential to our wellness. Not so, says this website:

“When you talk to people with cancer, even the most positive of them will admit to low times when they felt depressed and anxious. No one can be positive 100% of the time. It’s important that you don’t feel that you must always stay on top of things. Being positive doesn’t mean having to feel happy and cheerful all the time. It’s a positive thing to acknowledge and talk about your feelings – even when you’re feeling tired, worried, depressed or angry.

There may be times when you want to talk about a difficult topic like the chance of the cancer being cured or making a will. Comments about being positive are then not always helpful - in fact, they can be very upsetting.”

Sometimes, you just can’t respond positively to cancer. There’s sadness associated with it, anger, even depression. It does no good to try to stuff powerful feelings like these, to deny that they’re present, out of a mistaken belief that keeping a sunny attitude is somehow therapeutic.

I think the most therapeutic thing, actually, is to try to keep closely in touch with our true feelings, to acknowledge them, to deal with them appropriately. This doesn’t mean bleeding all over our friends and family, emotionally speaking. But it does mean freeing ourselves from any prejudgment that there’s a particular way we ought to be feeling.

Most of us, I suspect, would do much better if we’d seek to banish that little word “ought” from our thinking, when it comes to feelings.

September 4, 2009 - PTSD?

Here’s a selection from a recent entry in the blog of Kaylin Marie, a young adult with cancer:

“...cancer doesn't end once you're in remission. It becomes a terrifying part of you, kind of like how Tom Selleck and his moustache have become one single entity. It haunts your dreams. I could go on.”

She then quotes D.H. Lawrence:

"...Slowly, slowly the wound to the soul begins to make itself felt, like a bruise, which only slowly deepens its terrible ache, till it fills all the psyche. And when we think we have recovered and forgotten, it is then that the terrible after-effects have to be encountered at their worst."

– Cancer Is Hilarious blog, August 13, 2009

That’s pretty heavy. But it’s the reality of cancer. Once you have the disease, the thought of it never completely leaves you.

There are triggers that can bring the whole experience roaring back. I remember I had an old, green shirt I used to wear to my chemo sessions. It had buttons down the front, which was a convenience when it came time to access my port. It was old and just a bit threadbare, which meant I wouldn't much care if some Betadine stained it. For months after my treatments were over, I could take one look at that green shirt and feel a wave of queasiness come over me. The shirt was a trigger.

The good news is, this sort of thing does get better with time. I don’t imagine Kaylin Marie has discovered that yet, because her treatments were so much more recent than mine. Yet, even so, that shirt will be, forever after, my chemo shirt. It hangs in the closet. I rarely wear it. These days, though, I can stand to look at it without it carrying me instantly back to the chemo suite, like some magic carpet.

I suppose there are some elements of post-traumatic stress syndrome (PTSD) in the cancer experience. Time may not heal all wounds, but it does seem – gradually, imperceptibly – to heal this one.

September 3, 2009 - Help a Bald Brother Out

I don’t know why I’m on such a video kick lately. People send these things to me (often on Facebook), and I pass ‘em on.

Here’s Larry David, of Seinfeld fame:

Larry David: Help A Bald Brother Out - watch more funny videos

September 1, 2009 - A Little Medical-Insurance Humor

August 26, 2009 - The Passion of His Life

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

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



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

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

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

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

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

August 25, 2009 - Be Your Own Advocate

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

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

Whatever the reason, this number is way too high.

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

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

A word to the wise...

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

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

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

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

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

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

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

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

Thank God.

August 22, 2009 - Laughter Yoga

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

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



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

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

Maybe laughter really is the best medicine.

August 19, 2009 - Resilience

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

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

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

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

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

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

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

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

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

So true.

Resilience. It’s a good word.

August 18, 2009 - The Breadth of God

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

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

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

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

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

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

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

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

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

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

It’s the breadth of God.