August 28, 2008 - The Gift in It

“If I hadn’t been on this journey, I wouldn’t have met some of the people that I have. I put all my faith in God, and every day you just keep going. Having cancer lets me live my life in a different way than I would’ve. There is a gift in it.”

These are the words of Betsy Poehler, a 42-year old breast cancer survivor who was quoted this morning in our local newspaper. Cancer as a gift-giver? It’s a statement that can be hard for someone who hasn’t faced a life-threatening illness to understand. This sort of outlook is more than a breezy, ephemeral optimism. For most people who say such a thing, it’s a costly, hard-won bit of wisdom.

The image that pops into my mind comes from a Greek myth: the well-known story of Pandora’s box. The only thing most people recall about this story is that Pandora, a young woman of insatiable curiosity, opened a box she'd been forbidden to open, whereupon all sorts of bad things came flying out, like bats fleeing a cave at sunset. “Opening Pandora’s box” has come to mean unleashing a cascade of unintended consequences.

Yet, there’s more to the myth than that. The name “Pandora” means “giver of all” (pan means “all,” dora means “gift”). The gods created Pandora, the first woman. They gave her the famous box (actually, a jar in the earliest versions), which they filled with greed, vanity, slander, envy, warfare and all manner of other evils. The cunningly-crafted box had been built strong enough to contain these horrors, but once opened, there was no getting them back. Pandora lifted the lid, and that was that.

Well, not quite. There was one other gift remaining; a bright, golden spirit called Hope. Pandora happened to see it before it could make its escape, and slammed the lid back down, keeping it eternally available to human beings. To this day, hope continues to be a remedy for all the evils and sufferings that continue to roam the world, wreaking misery.

Hope is the unexpected gift many of us discover in the midst of cancer treatment. It’s among our greatest allies in the long march towards healing.

August 26, 2008 - The Lion in Winter

Yesterday evening I turned on C-Span, to watch Ted Kennedy’s speech to the Democratic Convention. I was wondering – as was everyone else watching, whether in the convention center or at home – if these ten minutes or so in the national spotlight could be his swan song as a politician.

Not if Ted has anything to say about it: “I pledge to you that I will be there next January on the floor of the United States Senate when we begin the great test.” The crowd goes wild. They know the adversary he’s up against. They know he may not be able to keep that promise, but they honor him for making it. They are in awe of his grit and determination.

“For me this is a season of hope,” Ted continues, “new hope for a just and fair prosperity for the many, and not just for the few – new hope. And this is the cause of my life – new hope that we will break the old gridlock and guarantee that every American – north, south, east, west, young, old – will have decent, quality health care as a fundamental right and not a privilege.”

“The cause of my life,” he says: health care for all. When the speaker has brain cancer and has been given just months to live, “the cause of my life” takes on a dimension that goes beyond mere rhetoric. Sadly, the Senator’s own health situation will prevent him from seeing the cause through to completion (note the sober realism of “when we begin the great test”). Even if this aging lion is still standing on the floor of the Senate in January, the day will come soon enough when others will step into his leadership role. Maybe he’ll be able to hang on long enough to see, if not outright victory, then at least the inevitability of success.

What do people see, when they look at this man standing before the microphone, and hear him give a speech filled with the typical Kennedy passion, but now at a lower intensity, befitting his medical condition? Do they see an accomplished orator and a leader of his party and nation? Or do they see a guy with cancer? Probably a bit of both. Cancer is an inescapable reality. For better or for worse, it quickly becomes a part of who we are.

And so, when the camera pans out to capture the faces of the crowd, we see more than a few tears being wiped away, among the delegates. It’s the party faithful out there in the bleachers, the true believers. They’re passionate about the cause, yes. But they also have personal affection for their leaders. This man’s illness has already become part and parcel of his message.

The other day, I was talking with a woman who’s been diagnosed with follicular, B-cell non-Hodgkin lymphoma, the same kind I now have. She has no medical insurance, and she’s too young for Medicare by a few years. She’s had blood tests, but she can’t get a bone marrow biopsy. The out-of-state specialty lab wanted thousands of dollars in cash up front, and she can’t afford it. She could have used a credit card, but she and her retired husband decided that, on their limited income, it was too great a financial risk.

The type of lab analysis her oncologist wants her to have is beyond the expertise of a local hospital. If it were, the hospital could probably have written off part of the expense as charity care. I suppose she could go to a regional cancer center that has its own in-house, advanced lab – one that could perhaps likewise extend an offer of charity care – but that would involve getting new doctors and traveling some distance. I’m not sure this frail woman, leaning on her walker, is up to that.

Here is an example of one of the gaping holes in our healthcare-funding system, one that could have life-threatening implications.

This sort of thing should not happen in a civilized country. If Senator Kennedy has his way, it won’t happen much longer.

For the full, 8-minute text of Kennedy’s address, click below:

August 25, 2008 - Life is Good (no trademark)

Driving around recently, I’ve been noticing an odd slogan on little stickers on the backs of cars. They’re everywhere, it seems. The stickers say, “Life is good®.”

What’s all that about, I asked myself? And, who’s got the kahunas to trademark a slogan like “Life is good”?

The trademark seemed to me an oxymoron. If life truly is good, then why trademark it? Is someone going to steal the goodness of life from you, if you don’t assert your proprietary rights over it?

I Googled it. My trusty Firefox browser led me to a website belonging to a clothing company trading under that very name. There, I found a link to “The Life is good story.” I clicked on that, and discovered their corporate saga: how the company was founded by a couple of brothers who were living a hand-to-mouth existence hawking homemade t-shirts, until they happened upon the slogan, after which everything was golden. Now, it appears, they have not only a full line of clothing to offer to the universe, but also “Life is good Festivals, positive products, and a steady dose of ping pong,” along with their “simple message of optimism.”

Along the way, they’ve evidently done quite well for themselves – which makes their slogan a self-fulfilling prophecy.

It seems their company also has a mascot, a crudely-drawn stick-figure guy named Jake, whose image appeared on the first “Life is good” t-shirt, and countless products since then.

Who could quarrel with “Life is good”? Is anyone really going to disagree, saying it’s bad to be alive?

Of course not. “Life is good” is a harmless bit of fluff – the 21st century equivalent, I suppose, of the yellow smiley faces of the early 1970s.

The “Life is Good” guys were shrewder than the artist who invented the smiley face. They went out and got them a trademark. According to Wikipedia, the smiley face’s designer was a man named Harold Ball, who drew the first of these faces in 1963 for an insurance company’s employee-morale campaign. The only profit he made was a $45 commission from the insurance company. Neither he nor the company ever trademarked it. It went viral. The annoying yellow face has now passed into the public domain, so it belongs to the ages. (That, and to Wal-Mart®, I suppose.)

An article in Inc. magazine says part of the company’s success has been its slogan’s appeal to survivors:

“But ‘Life Is Good’ has also become something of an anthem for survivors. The founders receive thousands of letters from people whose lives are demonstrably not good, because they are sick or have lost a loved one. Where other companies supply their stores with headquarters-authored mission and values statements, Life Is Good provides loose-leaf binders labeled ‘Fuel’ and stuffed with thank-yous from people who have taken solace or inspiration from its message. Michael J. Fox, suffering from Parkinson's disease, has been photographed wearing Life Is Good products. So was Stephen King during his long convalescence after being struck by a van.”

I don’t know how I could have missed noticing this pop-culture phenomenon. Guess I just have my head in the sand or something.

Leigh Buchanan, the Inc. writer, confesses a grudging respect for Ben and John Jacobs, the “Life is good” guys, and all they’ve accomplished:

“One reason I initially missed the charm of Life Is Good is that I misinterpreted its message. I sensed a smugness there, as though the wearer were proclaiming, ‘My life is good,’ or else a willful blinkeredness: ‘Life is good if you make enough money and live in a First World democracy.’ But the Jacobses mean neither of those things. Rather, the words are an exhortation to appreciate the here and now. ‘Don’t determine that you’re going to be happy when you get the new car or the big promotion or when you meet that special person,’ explains John. ‘You can decide that you’re going to be happy today.’”

The Jacobs brothers have evidently been doing a decent amount of philanthropy of late. As is only right for the owners of a company whose worth has now topped $100 million. More power to ‘em, I say. When life gives you lemonade, you oughta spread some around.

Anybody who’s been around Cancer World very long has run across another slogan: “Cancer Sucks.” It’s found its way onto t-shirts, headbands and the like. If I had to choose between the two, I’d take “Life is good” any time. I think I’d even have said that in the midst of my chemotherapy. I felt lousy, but I never questioned the proposition that life is good, and worth holding onto.

Which, I suppose, is the essence of survivorship.

August 19, 2008 - Wind Is Relative

This evening, Claire and I go for a moonlit sail on the Toms River, on the boat owned by our friends Myrlene and Eric. We’re also joined by our friend Bill, the executive presbyter of Monmouth Presbytery.

Myrlene and Eric invited us on a similar trip about 10 months ago, but not at night. This cruise is timed for optimal enjoyment of both sunset and moonrise. Conditions tonight are near-perfect. The moon is just past full. The vision is glorious.

Last time we sailed, I was struck by the fact that sailboats need to tack in order to get much of anywhere (see my October 3, 2007 blog entry). That means they proceed in a zigzag fashion. That seemed to me symbolic of the sort of progress I’m making as a cancer survivor. Straight-ahead movement is not always possible. Sometimes tacking is the only way to get there.

This evening, Eric gives us another lesson. As I’m standing behind the wheel, steering the boat under his supervision, he explains what it means to “fall off.”

This nautical expression doesn’t mean stepping off the side of the boat and ending up in the drink. It does mean to turn the prow of the boat away from the direction of the wind. The opposite of “fall off” is to “head up” – to point the prow in the direction from which the wind is coming.

Perhaps the most important item of information a sailor needs to know is the direction of the wind. As Eric gives me tips on which way to point the boat so we stay in the channel, he doesn’t just say, “Turn right” or “Turn left” (nor even “Turn to starboard” or “Turn to port,” as I would have expected). The language of absolutes is not useful here. The wind changes, as does our position relative to it. Other realities – such as the location of the channel and its marker buoys – do not. They belong to the earth. Our mast and sail, pointed heavenward, belong to the sky. Our forward progress depends on our constantly adapting to breezy, insubstantial realities. Keeping the boat in the channel involves a multitude of small adjustments, based on numerous relative factors – chief among them being wind direction.

Scripture speaks of the Holy Spirit as wind. The Hebrew word ruach and the Greek word pneuma both mean “breath” or “wind.” As we navigate through any of life’s challenges – but especially the challenge of living with cancer – we need to remain aware of the touch of the wind upon our face. Always we seek to discern the direction from which the Spirit-wind is blowing.

That wind varies in intensity. Sometimes it’s a soft kiss upon the cheek. Other times it’s gale force, unmistakable. The wind also varies in direction. Sometimes we feel it on our face; other times, from the back. Whichever way the wind is blowing, some forward progress is still possible – just not always by the most direct route.

Sometimes we fall off. Other times we head up. Whatever the case, we need to heed the lessons of the wind, and adjust our progress accordingly.

August 16, 2008 - In Memoriam, Leroy Sievers

Today, we in the cancer-blogging community learned we've lost one of our leading members: a man who has offered unique gifts of courage, candor and love of life. Leroy Sievers, creator of the “My Cancer” blog on the National Public Radio website, has succumbed to the colon cancer that invaded his central nervous system.

In his blog, which grew out of a weekly commentary he recorded for NPR, Leroy offered a daily journal of the parts of his life, large and small, that were affected by his cancer. Those of us who followed Leroy’s blog witnessed with dismay his slow decline in physical independence, even as we watched his spirit soar. From Leroy we learned how to face pain, to seek out the whimsical in the ordinary, to be both patient and a patient, to value human relationships and to discover joy in simple things.

The “My Cancer” blog has become an internet phenomenon, with more than a hundred comments posted every day. Those are just the comments: I couldn’t begin to guess how many lurkers silently visited the blog each day. I’m sure it was well into the thousands.

I used to read some of the comments, as well as Leroy’s own writing. As with any popular blog, the comments are a mixed bag: the thoughts and reactions of a varied bunch of cancer survivors and their caregivers, as well as others who used to check in regularly for whatever reason. Many of the comments responding to Leroy’s death speak of how much his readers will miss him – even though few of those writers have ever met him in person. All they know of him comes from his writings, or perhaps from listening to his NPR broadcasts or Ted Koppel’s interview with him for the 2007 “Living With Cancer” documentary on the Discovery Channel (before he got sick, Leroy was the longtime producer of Ted’s Nightline TV show, and a personal friend of his).

The degree of grief expressed in some of the blog-readers’ comments is a little surprising to me. Leroy was just a guy who kept an online journal, but some of these writers speak of him as though he were a close friend. Such is the intimacy that grows out of common experience: Cancer World, as Leroy used to call it, is a tight little neighborhood. The degree of personal loss expressed by some of these people is a witness to how lonely and isolating the experience can be. Leroy’s daily updates on his struggles made others feel they were not alone. And that was a great thing.

We have lost a great soul. We will miss him.

August 16, 2008 - Bye-Bye Blue Cross?

I came across this disheartening news item in the paper yesterday:

Horizon Blue Cross Blue Shield seeks for-profit status
by Dunstan McNichol
Newark Star-Ledger
Friday August 15, 2008

“The massive Horizon Blue Cross Blue Shield of New Jersey health insurer today formally applied to become a for-profit company, a move the insurer's executives say will generate $1 billion for insurance assistance in New Jersey.

Blue Cross Blue Shield, which covers 3.6 million New Jerseyans, is seeking permission to convert to for-profit status under terms of a 2001 state law that authorized such transactions.

William J. Marino, the company's president and CEO, said the conversion will not affect premiums.

‘Our Board of Directors has decided to reconsider conversion at this time because our nation's health care system is undergoing a rapid transformation,’ Marino said in a statement announcing the application. ‘As the state's oldest and largest health insurer, we have an obligation to our more than 3.6 million members to be prepared to meet their needs as our health care system changes.’

Under terms of the state conversion law, 100 percent of the proceeds of the Blue Cross conversion would have to be dedicated to expanding access to affordable health care, Marino said in his statement.

Marino said Blue Cross Blue Shield would enjoy a greater ability to borrow funds and invest in new technology as a private entity.

The company has operated as a not-for-profit insurer for more than 75 years.”

My initial reaction is, WHAT are they thinking????!!!?

It’s becoming apparent to more and more people in this country that the private sector has failed massively in its efforts to maintain a working healthcare system. Greed has trumped patient care at every turn. Now, just as we seem poised to move in the opposite direction – towards more nonprofit- and government-managed healthcare – Horizon Blue Cross/Blue Shield is talking about meeting the rest of the country as it passes them coming the other way. Go figure.

It makes no sense – except to the high rollers who would become shareholders of the new, for-profit entity. Sure, there would be a short-term windfall of a billion dollars that the State of New Jersey – if its leaders have any wisdom at all – would apply towards meeting the medical costs of the uninsured. Yet, the day would come soon enough when that money is all spent, and the customers of Horizon Blue Cross/Blue Shield would end up holding the bag. The empty bag.

Remember, every dollar of shareholder profit is a dollar that can’t be used to provide healthcare. Over time, that would have a massive, detrimental effect on the quality of care.

I sincerely hope the New Jersey Legislature will act to block this proposal, as they have once before. It sounds like a very bad idea.

It makes me grateful that Horizon is not my medical insurer. The Presbyterian Church (U.S.A.) uses Highmark Blue Cross/Blue Shield (based in western Pennsylvania) to manage its ministers’ medical insurance. Most of my bills go to Horizon first, though, before they begin their journey out of state. I’ve had plenty of problems with bills Horizon initially rejected because they don’t have me in their database as one of their insured. After this had happened a few times, you’d think they’d have set up a little forwarding order that would remind their people, “Hey, this guy’s bill should be forwarded to Highmark.” But, no. The Horizon people find it easier to shrug and say, “Not my problem,” before stamping the bill “Return to sender.”

It’s bad enough the non-profit Horizon executives squander money on exorbitant salaries for themselves and on an advertising blimp. Just think of what damage for-profit executives might do.

August 10, 2008 - Keeping Fear in Perspective

My sermon this morning – first one after my vacation – is about the story from Matthew 14:22-33 of Jesus walking on the water. One of the things I focus on is fear – which, oddly enough, is the disciples’ first reaction when they see Jesus coming towards them across the waves. “It is a ghost!” they cry out.

Here’s an excerpt:

Fear is a primal emotion. It’s one of the most compelling motivators of human behavior. Seven years out from the events of September 11th, 2001, we’re just beginning, as a nation, to appreciate how frightened we’ve been, these past years: and how that fear has affected our behavior.

Remember how it was, back then – how suddenly and how disturbingly those images of burning skyscrapers affected us? Remember how we felt so certain there was going to be another terrorist attack, within days if not weeks? Remember how the news media ran scary stories about the power of Al Qaeda – how it was a worldwide network, closely controlled by Osama bin Laden, who was in command of dozens, even hundreds, of undercover “sleeper” operatives, living beside us in our towns and cities, waiting to wreak havoc?

Any American of Middle Eastern, or even East Indian, origin can tell you about how our national fear impacted their lives. There was, for example, the family who owned a gas station in southern Ocean County, who became the subject of vicious rumors that they had terrorist connections. Suddenly, their business dropped off to almost nothing. It didn’t matter that this family wasn’t even Muslim (being Muslim, of course, doesn’t make you a terrorist). They were Christians from Egypt, and had been so for many generations. When their customers looked at them, it was as though they had seen a ghost.

This week’s news has brought a possible explanation for the anthrax scare that followed the 9/11 attacks. Everybody was so rock-solid certain, back then, this had to be the work of Al Qaeda, or maybe Saddam Hussein and Al Qaeda working together. Now, the FBI claims to have chemical evidence that the anthrax spores in those letters originated not in the Middle East at all, but in a U.S. Army laboratory. They think the perpetrator was that mentally-disturbed American scientist named Bruce Ivins, a man who had no connection to Middle Eastern terrorism. Ivins, as you probably know, recently took his own life – so the case may never be proven – but it’s looking more and more likely that the ghost we thought we all saw, back in 1991, was no ghost at all.

Fear will do that to us. It’s that sort of deep-down, primal emotion. When fear walks in the front door, reason frequently climbs out the back window. Fear, the psychologists tell us, comes from a primitive part of our brain, a part that’s less about logical reasoning and more about quick, emotional response. Fear is like an emotional fire alarm. If our early ancestors saw a saber-toothed tiger cross their path, fear would set their feet to running before their brain even had time to figure out whether fight or flight was the better option.

Fear is a good and useful thing in situations like that, but when it comes to more complex sorts of problems, it’s much less useful. In fact, fear can be a hindrance. Fear can actually block our reasoning capacities for a time. It can lead us to say and do things we’ll later regret. This is just as true for nations as it is for individuals: when we respond in knee-jerk fashion, out of unreasoning fear, we often make big mistakes.

Getting cancer is a scary experience, no doubt about it. I would never be one to suggest that we deny or belittle our natural fear. It’s real. It’s part of the cancer experience – a big part.

Yet, our fear is something we can and should try to manage, just as we try to manage any other side effect. After some time living with cancer, we may even be able to say to our fear, when it does show up again, “Hello, old friend,” then make sure we keep our distance. We can acknowledge our fear, but that doesn’t mean we have to hand it the key to our house.

August 8, 2008 - Watch and Wait Some More

Late this afternoon, I have an office visit with Dr. Lerner. It’s a follow-up to my July 1 CT scan. I already know the results, as I walk through the office door, because the doctor phoned me while I was on vacation to let me know the results look pretty good.

As it turns out, the hardest part of today’s office visit is the port flush. The nurse has a tough time getting the needle into my implanted port, and has to call in another nurse to give it a try. It seems the port has shifted a little, with its business end no longer facing upward, towards the skin. At least, that’s what the first nurse thinks, as she sticks the needle in a couple of times and feels it hitting something hard – probably the metal casing of the port, she tells me.

Nurse number two does a lot of manipulating of the port with her fingers, before she gives it a try. Something she does must be right, because the needle goes right in. I suppose she managed to turn the thing, somehow. She even manages to get a blood return out of the port for my blood test – something that hasn’t always worked for me in the past. She has to flush it twice with the heparin in order to get the blood to flow backwards through the port and into the plastic tubing, so she can drain a little off into a couple of test tubes.

Both nurses are apologetic about having to stick me multiple times with the needle. They couldn’t be nicer. At least they saved me from getting stuck in the arm for the blood test, they reassure me (which is what’s happened in the past when they couldn’t get the blood return to work).

It’s really no big deal, I tell them – and I mean it. One of the realities of being a blood-cancer patient is that, after a while, needle sticks become routine. Back when I was new at this, I used to cringe a little each time, preparing myself for the worst. Now, I just roll up my sleeve (or, in the case of a port flush, unbutton the top buttons of my shirt) and say bring it on.

I get a favorable report from Dr. Lerner. He explains that the radiologist’s estimate of 17% growth in my abdominal mass (which we’ve been assuming is residual scar tissue) may sound like a lot, but that amount is not statistically significant. It’s within the margin of error. Measuring these things is not an exact science, he tells me. The radiologists use a little measuring widget on their computer screens, and it all depends on where they choose to click the mouse to indicate the outer border of the structure being studied, before they drag the mouse to the opposite edge to make the measurement. The border’s not always that distinct, so there’s a bit of scientifically- informed guesswork involved.


Dr. Lerner says he’d like me to come back in 3 months, and have another CT scan or PET scan a couple of weeks before. Which one it will be this time, he can’t say just yet. He wants to wait for my detailed blood test results to come back from the lab. The instant CBC (complete blood count) report they handed me looks fine, but there are more detailed analyses the alchemists down at the blood lab have to perform, and these take time.

So far, so good. Another three months, another scan. Watch and wait some more.

August 7, 2008 - It Happens to Everyone

Film star Kirk Douglas has an insightful little essay in the August 2 issue of Newsweek. He’s not writing about cancer – Douglas had a disabling stroke, and has had to learn to speak again – but the wisdom he has to share about survivorship applies to many different obstacles in life:

“Years ago I was at the bedside of my dying mother, an illiterate Russian peasant. Terrified, I held her hand. She opened her eyes and looked at me. The last thing she said to me was ‘Don’t be afraid, son, it happens to everyone.’ As I got older, I became comforted by those words....

In my case, a deep depression set in when I had a stroke 12 years ago and my speech was affected. The thought that I would never make another movie echoed in my brain. I was constantly beset with passivity. I just wanted to lie in bed and do nothing. Fortunately, my wife believes in tough love. When I lay there feeling sorry for myself, Anne would say, ‘Get your ass out of bed and work on your speech therapy.’ That helped.

Depression is caused by thinking too much about yourself. Try to think of others, try to help them. You will be amazed how that lessens your depression. That satisfaction is priceless.”

There’s more to depression than “thinking too much about yourself,” of course. If nothing else, there are biochemical factors that play a major role. Yet, the mind-body connection is porous, with causation flowing both ways. How we choose to deal with our life-situations does make a difference.

I think Douglas is right: that relentless, “woe is me” pattern of turning in upon ourselves can lead to nothing good. He took his mother’s homespun advice to heart. Sooner or later, death does happen to everyone. It’s all about how we play the cards we’re dealt.

Douglas seems to have learned that the meaning of life is found not in its duration, but in how we live the years we’re given. No doubt, it’s a hard-won lesson. He’s a ripe old 91, but he’s had a grueling dozen years since his stroke. In his first 79 years, he lived a storybook life, becoming Hollywood royalty. Reading his words, I get the sense that these recent years have been among the most rewarding – especially as he and his wife have engaged in a host of philanthropic activities.

His mother’s deathbed words to him are not the sentimental platitude you’d expect to hear in an old-time Hollywood movie. They’re simple, practical and true – as is Kirk Douglas’ advice to us.

Preach it, brother.

August 2, 2008 - More Cancer Poetry

The New York Times blog I cited on July 29th directed me to another website, The Cancer Poetry Project.

Here’s another cancer poem from that website, this one by a woman named Marjorie Woodbury. She died in 1993 of leukemia, but wrote this poem about her uncle, who died from lung cancer. It’s called “Chocolates”:

When he wakes with pain pounding
his spine, and it’s still two hours
before she can give him the fat yellow capsule
he craves, she offers chocolates
instead. He runs his hand over cellophane,
and suddenly he, to whom nothing
has tasted good for weeks, rips
the box open, devours an orange cream,
then three more, before offering them
to her. Propped against the big bed’s headboard,
knees drawn up, they eat chocolates
like children: testing centers for flavor, licking their fingers,
letting wrappers fall in the sheets.
He savors the sweet on his tongue,
and it lulls him, like her quiet talk
of gardening, the cats, groceries she must buy
the next day, until they sense
another night past. Turning from each other,
they breathe more easily, crumpled, fluted wrappers
rustling when they turn, the empty box between them.