Thursday, August 28, 2008

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.

Tuesday, August 26, 2008

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:

Monday, August 25, 2008

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.

Wednesday, August 20, 2008

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.

Saturday, August 16, 2008

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.

Sunday, August 10, 2008

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.

Friday, August 08, 2008

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.

Thursday, August 07, 2008

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.

Saturday, August 02, 2008

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.


Wednesday, July 30, 2008

July 30, 2008 - Woodpecker

This last week of my vacation, I'm relaxing up at our little house in the Adirondacks. The place has no lawn and is surrounded by woods, so just by looking out the windows we're sometimes treated to some up-close-and-personal wildlife. I've already seen deer outside the house several times, this trip.

This afternoon I was attracted by some movement outside our living-room window. I was rewarded by the sight of two very large woodpeckers, who had just zoomed in and attached themselves to a couple of trees.

These birds were LARGE - bigger than I ever imagined a woodpecker would be (although I have to say, I've never seen one this close). One flew off pretty quickly, but the other hung around for a while, moving from tree trunk to tree trunk, looking for bugs no doubt.

I tried to get a picture, but by the time I got the camera into position, it had gone. I called Claire right away (she's the birdwatcher in our family). Based on my description - it looks like Woody Woodpecker, I told her - she said it was probably a Pileated Woodpecker. I checked it out on Wikipedia, here at the public library (where I now am), and found out she nailed the identification (kudos, Claire). Wikipedia says this bird was the model for ol' Woody.

Pretty cool, to see a couple birds like that right outside the window.

The Creator has all kinds of free gifts to offer us, if only we have eyes to see.

Tuesday, July 29, 2008

July 29, 2008 – Some Cancer Poetry


Here’s another way some survivors respond to cancer: by writing poetry. I ran across this poem on a New York Times health-related blog.

It’s by a woman named Kyle Potvin, who’s just gotten over chemotherapy for breast cancer.

The backstory is, Kyle had just come back from a business trip to Texas, where she’d bought her sons terrariums to grow cactus plants. Working with them to plant the cacti, she was inspired to write a poem, “The New Normal”:

To grow a Texas cactus from the start,
You scatter tiny seeds on dirt and sand
(Your nail works well to nudge stuck ones apart).
Then sprinkle water with a steady hand.
Each day, my son asks, “Will it get real tall?”
He crowds his brother as they check for growth –
The way I’ve searched my hairless head since fall.
I pray young shoots will sprout up soon for both.
It happens all at once – soft spikes appear;
I rub my scalp while calling to the boys.
They peer in close to analyze each spear.
My bigger joy is lost to hooting noise.
The victory is all my own: Mom’s hair?
The news is that we grew a Prickly Pear.


Friday, July 25, 2008

July 25, 2008 - Insurance Company Rules

While I'm on a roll with embedding YouTube videos, this little TV commercial makes a satirical point about the way some medical insurance companies like to operate:

July 25, 2008 - Farewell to Randy Pausch

Sad news, but news we expected eventually. Professor Randy Pausch of Carnegie-Mellon University has died of pancreatic cancer:



See my October 24, 2007 blog entry for more on this remarkable man, and his "Last Lecture" delivered at Carnegie-Mellon. It's become one of the most popular downloads on YouTube. Oprah also had him on her show, to give a Reader's Digest condensed version of the lecture.

Here's a link to a news article about his death.

Many of us are grateful to Randy for modeling what successful survivorship is all about.

Carl

Wednesday, July 23, 2008

July 23, 2008 - Early Mid-Life Crisis?

The more I move through this journey of cancer survivorship, the more I’m coming to realize it’s a continuing process. Being a survivor is different one month after treatment ends than it is a year, or two years or more, afterwards. We continue to grow into this reality called survivorship.

I don’t imagine this is something a person who hasn’t been through it can easily understand. With most other medical situations – say, for example, an infection that’s successfully treated, or the hernia-repair surgery I had a few months ago – when it’s over, it’s over. Cancer is never over, not even if remission continues into the long term. There’s always the possibility it could return.

Here’s another quote from Glenna Halvorson-Boyd, from Dancing in Limbo: Making Sense of Life after Cancer (which I’ve now finished reading). Here, she shares a long-term survivor’s perspective – reflecting also the perspective of others, that she’s learned about through a number of interviews:

“At some point, those of us who have survived cancer stop wondering why it happened. We get over the posttreatment letdown. We tolerate our fears of recurrence in the full knowledge that there is no sure cure. Our relationships are renewed on current terms. Life goes on.

While our preoccupation with cancer fades, our awareness of mortality remains. That heightened awareness guides our lives, whether we recognize it or not. It creates anxiety, but it also reminds us that we are alive. Our time on earth is short and precious. This is the stuff of great art and trite greeting cards. Only a writer of Franz Kafka’s perverse gifts can get away with stating the obvious, ‘The meaning of life is that it stops.’ When we use a brush with death to refocus our lives in more authentic and meaningful ways, we are making the best of the situation, to be sure, but we are not romanticizing our misfortune. Cancer is not glamorous. Surviving cancer is neither romantic nor heroic. It is our good fortune, and it is forever a part of our lives. We may feel stronger for having endured the trials, or we may feel more vulnerable. Probably we feel both, on alternate days or even at the same time. Sometimes we know that ‘sadder but wiser’ is a cliché because it is true....

For some of us, having had cancer means that we don’t have time to waste; for others of us, it means that wasting time is our greatest luxury. For some, it means pushing to achieve our ambitions; for others, it means releasing ourselves from worldly ambition. As life goes on, we each sort out what it means to be a survivor.”

– Glenna Halvorson-Boyd and Lisa K. Hunter in Dancing in Limbo: Making Sense of Life After Cancer (Jossey-Bass, 1995)

At the time she was writing, Glenna was reflecting back on more than ten years’ experience as a mouth cancer survivor. She had surgery that removed a part of her tongue as well as other tissue inside her mouth, and she had to learn how to speak again. Unlike me, cancer has left Glenna with a continuing disability, but the change she’s talking about is deeper than the merely physical. It’s a matter of soul.

I’m especially struck by what she says in the last paragraph, above, with respect to ambition. Some survivors want to aggressively pursue some long-deferred dream. Others want to shed worldly cares and learn to live as slowly and deliberately as Thoreau did beside Walden Pond. I think I’m somewhere in between. Some days, I want to go seek a call to some tall-steeple church and write a bestselling book. Other days, I just want to settle in where I am, be as good a husband and father as I can be, and simply try to live as authentically as I can. At this stage in my survivorship, I’m experiencing major ambivalence.

Here at our little cabin in the woods, ever since Claire ran out of vacation days and had to return home, I’ve been feeling that tug in two different directions. I’ve got some major writing projects in the works – most urgently, an overdue third installment of a preachers’ commentary on Cycle A of the Revised Common Lectionary. CSS Publications is going to combine this manuscript with books I’ve already written on Cycle B and Cycle C, and bring them out as a single volume. This morning, I finished my draft of Cycle A, and – once I drive into Plattsburgh, to my favorite wireless hot spot in the Borders bookstore café – I’ll e-mail it off to my editor. I’ve still got a good bit of work yet to do, on some additions the publisher has requested for the previous two volumes. It will be a good feeling to finally finish that multi-year project, which I began before my cancer diagnosis. I just may be able to finish it before my vacation ends in a couple of weeks.

I have to admit, though, I don’t have quite the fire in my belly for this project as I did when I began it. It’s all part of that ambivalence I’m feeling. Do I want to be one of those survivors Glenna talks about, who’s eager to “achieve worldly ambitions”; or, would I rather “release myself from worldly ambitions?” I’m still trying to figure that one out.

Maybe I’m having an experience similar to that of a testicular cancer survivor named Neil, whose story Glenna tells:

“Another cancer survivor described his cancer experience as an ‘early midlife crisis.’ Neil was thirty-two when he was diagnosed with testicular cancer twenty years ago. Although the prospects for a cure are quite good today, back then he faced almost certain death. Neil fought for his chemotherapy and became one of the early successes in the treatment of testicular cancer. When faced with death, he took charge of his life. As he puts it, ‘At thirty-two, I woke up to the fact that I’m going to die, and... I don’t want to waste my time. So you recognize that your time is limited and precious, and that you... have some control over it.’”
(p. 147)

Some people go out and buy a red sportscar to celebrate their mid-life crisis. I got lymphoma.

I should have bought the sportscar instead.

Monday, July 21, 2008

July 21, 2008 - Triple-Barreled Shotgun

A news release from the Leukemia and Lymphoma Society directed me to an article in The Oncologist, which includes this conclusion:

“Treatment options for patients with follicular lymphoma have significantly expanded. They include ‘wait and watch,’ radiotherapy alone for stage 1 or 2, rituximab alone, RIT alone, single- or multiple-agent chemotherapy combined with rituximab, and participation in many ongoing studies with a variety of different treatment combinations and intensity levels. Therapy might thus ultimately be adapted to the patient’s individual situation, depending on the aggressiveness of the particular patient’s disease while still relying on a continuously growing repertoire of salvage therapies.

Multiple studies in NHL indicate that chemotherapy combined with rituximab or RIT yields superior results compared with chemotherapy alone. We argue that chemotherapy combined with both RIT and full-dose biological treatment has an even higher efficacy potential. The tripletherapy approach employing upfront chemotherapy combined with optimized RIT and extended biologic treatment with antibodies may represent the best chance for prolonged disease-free survival, and potential cure, keeping in reserve the possibility of intensification with ASCT or allografting for relapsed patients.”


(Franz Buchegger, Oliver W. Press, Angelika Bischof Delaloye and Nicolas Ketterer, “Radiolabeled and Native Antibodies and the Prospect of Cure of Follicular Lymphoma,” The Oncologist, 2008;13:657–667.)

I plowed through the whole article, dense medical jargon and all, because it could very well describe the course of my next treatment.

Of the various treatment options described in the second sentence, I’ve already had “multiple-agent chemotherapy combined with rituximab” (the R-CHOP chemo cocktail I received in January-May, 2006). Ever since my relapse last spring or summer, my current “treatment” (if it can be called that) has been “wait and watch.”

I’ve known for some time about three other treatment options: autologous stem-cell transplant (ASCT), “extended” or maintenance treatment with rituximab, and radioimmunotherapy (RIT). RIT refers to one of two drugs, Bexxar and Zevalin, each of which attaches a radioactive tag to rituximab molecules, allowing tiny particles of radioactive material to piggyback on rituximab’s unerring ability to find and travel to lymphoma cells.

RIT is the treatment that came close to disappearing at the end of last year, when revised Medicare reimbursement guidelines threatened to price it out of existence (see my November 14 and November 30, 2007 blog entries). After a deluge of letters from cancer patients and their friends, Congress swooped in at the last minute and granted a temporary extension of the old reimbursement guidelines. Recently, the same thing nearly happened again. The President vetoed the latest Medicare bill that included sufficient funding to keep RIT alive, but Congress overrode his veto.

What’s new about this article is that it’s recommending that a triple combination of therapies – chemo, maintenance rituximab treatment and RIT – be undertaken before a relapsed NHL patient goes for a stem-cell transplant. Because of the dangers associated with stem-cell transplants, this new thinking pushes that option a little lower down the priority list.

My former treatment was like a double-barreled shotgun: go after the cancer with both barrels at once. Reserved for the future were two other promising possibilities: RIT (with or without a follow-up program of maintenance rituximab) and stem-cell transplant. There was also, of course, the possibility of simply reloading the shotgun and firing the same two barrels again (rituximab combined with a different chemo cocktail – since CHOP cannot be repeated). Now, the authors of this article are recommending that a third barrel be added to the shotgun, blasting the cancer with all three at once: chemo, RIT and maintenance rituximab.

I wonder if this will become the new standard for treating relapsed follicular lymphoma? Or, if it will simply be one strategy out there, that continues to be debated?

I wonder, also, what the insurance companies will think of the new triple-barreled combination? It will surely be more expensive (although probably still not as pricey as a stem-cell transplant).

Last week I received a phone call from Dr. Lerner, letting me know that my July 1st CT scan indicated only slight growth in my abdominal mass. How slight? Two millimeters is what the doctor said – explaining that the growth is so small, some would consider it to be within the margin of error. Dr. Lerner confirmed that, when I meet with him in early August, continued watch-and-wait will be his recommendation.

I think I’ll ask him what he thinks of the triple-barreled approach – just as a matter of interest. In any event, the slow pace at which my disease is progressing suggests it may be some considerable time before we’ll have to make any treatment decisions.

This is, of course, a good thing. By then, the “continuously growing repertoire of salvage therapies” may well have grown a little more, and that the ongoing debate about treatment options will have advanced that much further.

July 20, 2008 - Featured on Presbyterian Bloggers

Last Friday, this was the featured blog on the "Presbyterian Bloggers" blog. Check it out.

Click HERE, then scroll down to Friday, July 18:

http://pcusablog.blogspot.com/

Wednesday, July 16, 2008

July 16, 2008 - Certainty Lost, Wisdom Gained?

There are many losses associated with cancer, but among the most slippery to deal with is the loss of certainty. Such is the observation of Glenna Halvorson-Boyd and Lisa K. Hunter in Dancing in Limbo: Making Sense of Life After Cancer (Jossey-Bass, 1995). It’s a book I half-finished reading some months ago (see my April 18 blog entry), and have only recently picked up again. Here’s what these two cancer survivors say:

“We assumed that we had a future; now we don’t know. We assumed that we were safe in our own bodies; now we can’t be sure. We assumed that we had more control over our own lives. If we did the right things, we would be all right. In general, we believed in a more certain world.” (p. 88).

Most of us, in our younger years and well into middle age, live our lives based on certain assumptions. They’re irrational assumptions, but still we hold them dear. We know, intellectually, we’re going to die one day, but we really don’t believe it in our heart of hearts. By the same token, we may know that a certain percentage of the population will fall ill with life-threatening diseases, but we really don’t believe we’ll be numbered among them. We believe that if we do the right thing – or try to do the right thing – a beneficent Providence will reward us with life, liberty and a happiness we scarcely have to pursue.

We work hard, at times, to keep this irrational belief-structure in place. When we see neighbors get sick, many of us believe – consciously or unconsciously – that somehow it must be their fault. Maybe they smoked, or drank to excess, or gorged on some carcinogenic food we ourselves are wise enough to avoid. To believe otherwise – to acknowledge that many cancers and other life-threatening illnesses just happen, and scientists can’t say why – is too uncomfortable a thought to hold. And so, we search out a reason, a cause for the catastrophe. We leap on every rumor that the latest artificial sweetener or food additive is carcinogenic. We line up to protest the new cell-phone tower, because of course everyone knows those radio waves can’t be good for us. Before we know it, we’ve transformed those rumors into rock-solid certainty in our minds, based on scant scientific evidence. Flimsy logic, to be sure, but it will do in a pinch, if a whole belief-system is at stake.

Here are Halvorson-Boyd and Hunter again:

“Americans in the United States in the twentieth century hold some basic beliefs about life: that illness is caused by a known agent and can be cured; that if we follow the dictates of a healthy life-style, we are protected from sickness and even death; and that we can choose when and how we die. As cancer survivor Neil Fiore says in The Road Back to Health: Coping with the Emotional Aspects of Cancer, ‘The expectation of an understanding and controllable world is so deeply embedded in the modern mind that when horrific events occur we tend to attribute them to a logical, cause-effect relationship, rather than acknowledge that some things are still beyond our human understanding and the control of our technology.... As attempts to explain uncontrollable events, blame and self-blame are particularly damaging to one’s ability to cope with cancer.’” (p. 108)

We cancer survivors are mourning a multitude of losses. Few areas of our lives have been left untouched by the disease. Of all these losses, the loss of our cherished, irrational certainties may be among the most debilitating. Cancer has bestowed on us younger survivors a kind of wisdom, wisdom most of our peers won’t gain until they’re much older and facing health challenges of their own. Once we were relaxing in the soft candlelight of old and comfortable certainties. Abruptly, cancer turned on the overhead lights, and now we’re left blinking in their harshness – wiser, perhaps, but not necessarily happier.

In ancient Norse mythology, Odin, chief of all the gods, is offered the gift of wisdom. The gift, however, comes at a steep price. Odin must give up one of his eyes in exchange. So eager is Odin to obtain wisdom that he reaches into his eye-socket and plucks out his own eye. He undergoes terrible pain and lifelong disability in order to become wise.

Those ancient Scandinavian people were onto something. Wisdom never comes cheap. Always it demands something of us, by way of sacrifice.

None of us cancer survivors chose this kind of wisdom. But we do get to wear the eyepatch.

July 13, 2008 - Mind-Body Medicine Stories

Late this afternoon, Claire and I are sitting on the screened-in porch of our little house in the woods. It’s been raining softly most of the day. We have neither energy nor desire to do anything other than just sit here. After all the frenetic days of getting ready for the trip, a long day of driving and another day of settling in, we’ve finally hit rock bottom. We’ve arrived. We’re officially... on vacation.

The first book I picked up to read, out of the pile I brought with me, was one I’ve been hoping to get to for some time: The Cure Within: A History of Mind-Body Medicine, by Anne Harrington (Norton, 2008). I found it so lively and fascinating, I plowed right through it.

Harrington heads the History of Science Department at Harvard. In this wide-ranging survey, she traces the history of a very old idea that’s continued to bob to the surface, despite periodic attempts by some medical scientists to push it back down: the idea that our state of mind influences our bodily health.

The movement called “mind-body medicine” – if it can indeed be called a movement – is fairly amorphous. It contains within it everything from serious scientific studies to absolute quackery. Rather than trying to portray it as a coherent system, Harrington wisely chooses to tell stories. She identifies six signature “narratives” that come up again and again, across the generations:

1. The Power of Suggestion – Beginning with roots in religious exorcism rituals and continuing through the rise of mesmerism (later known as hypnotism) in the 18th and 19th centuries, this narrative culminates in the more recent understanding of placebos as something that may have real therapeutic value. Even skeptical, post-modern folk continue to respond to what has been called “the power of suggestion,” especially when mediated by a doctor or other authority-figure we trust.

2. The Body that Speaks – Beginning with the work of Freud, Harrington traces the efforts of various pioneers of psychology to listen to what their patients’ bodies are saying: not just the quantifiable messages of blood counts and body temperature, but also more subjective messages related to state of mind. From primitive Freudian notions of “hysteria” in women, through studies of “shell shock” (later, post-traumatic stress syndrome) in soldiers, through now-discarded truisms like stress as the cause of stomach ulcers, this narrative has evolved through many incarnations. The saga continues to be told by modern practitioners like cancer-treatment guru Bernie Siegel, who – rightly or wrongly – traces the roots of many cancers to emotional unease.

3. The Power of Positive Thinking – From “faith-healing” miracles at Lourdes, through Mary Baker Eddy’s Christian Science, through Norman Vincent Peale’s “power of positive thinking,” through Norman Cousins’ laughter therapy of the 1970s, to AIDS activists’ embrace of the self-healing concept in the 1990s, Harrington describes the persistent idea that we can think our way to better health.

4. Broken by Modern Life – Before the mid-20th century, the concept of “stress” was nothing more than an engineering term. But then, beginning with the pioneering work of psychologist Walter B. Cannon at Harvard (who identified the “fight or flight” response), and continuing through Hans Selye, who popularized the idea of stress as the signature problem of the modern era, stress is now on everybody’s mind. We’ve heard of the “Type A” personality that’s said to be at greater risk of heart attacks, and we’ve heard how stress-management techniques have helped AIDS patients maintain a healthy immune system. Can anyone doubt that psychological stress is real, and has an impact on physical health?

5. Healing Ties – “If two lie together, they keep warm,” observes the book of Ecclesiastes, “but how can one keep warm alone?” To that ancient wisdom, Harrington might add, “how can one stay healthy alone?” From stories of close-knit, ethnic communities whose members are inexplicably spared the worst of certain diseases, to tales of isolated, sickly children in orphanages who were rarely picked up and cuddled, to support groups that keep cancer survivors healthy, there’s ample evidence that social relationships play a big role in our health.

6. Eastward Journeys – The more disenchanted we in the industrialized West come to feel about our mechanistic, often soulless society, the more some of us are turning eastward, borrowing insights from ancient spiritual practices of India, China and Tibet. Harrington tells the tale of Harvard physician Herbert Benson’s interest in Transcendental Meditation – which he later secularized as “the relaxation response” – and of the east-west migration of practices such as acupuncture and qigong into complementary treatments for cancer.

Reflecting on Harrington’s rich depiction of mind-body medicine, I have to say there’s something troubling about it. If the mind can influence the body in the direction of either health or illness, then what does that say about those who become sick? Are we who have cancer somehow deficient in our thinking? Should we, the victims, be blamed?

Harrington is alert to this problem, mentioning it on several occasions throughout her book. One of the most memorable is connected with her quotation of a “darkly comic” 1940 poem of W.H. Auden, called “Miss Gee.” It’s about an elderly spinster who gets cancer, which her doctor attributes to her tightly-buttoned emotional life.

Here’s an excerpt:







“She bicycled down to the doctor,
And rang the surgery bell;
‘O doctor, I’ve a pain inside me,
And I don’t feel very well.’

Doctor Thomas looked her over,
And then he looked some more;
Walked over to his wash-basin,
Said, ‘Why didn’t you come before?’

Doctor Thomas sat over his dinner,
Though his wife was waiting to ring,
Rolling his bread into pellets:
Said, “Cancer’s a funny thing.

‘Nobody knows what the cause is,
Though some pretend they do;
It’s like some hidden assassin
Waiting to strike at you.

‘Childless women get it,
And men when they retire;
It’s as if there had to be some outlet
For their foiled creative fire.’”
(p. 90)

(The “rolling his bread into pellets” is, I expect, a reference to the fact that some early placebo pills were made of bread.)

Ought cancer survivors to be blamed, somehow, for some “foiled creative fire” that has rendered us susceptible to disease? Harrington urges caution. She’s well aware that the insights of mind-body medicine can be a double-edged sword. For that reason, she concludes her book by urging that these healing narratives be used with discretion. Such stories must be used descriptively, not prescriptively. They help us “bridge the lacunae in our thinking.” Even though the use of such narratives may seem, to some, unscientific, medicine still ought “to embrace them as part of its map and part of its territory alike” (p. 255).

The Cure Within is a satisfying read. Check it out.

Friday, July 11, 2008

July 11, 2008 - Off to the North Country

Today we're headed up to the North Country - our "camp" in Jay, New York, just east of Lake Placid. Claire and I both have some vacation time - hers shorter than mine, but we'll make the best of it. Our klds - as well as our sister-in-law, Eva, and her daughter, Elizabeth (who live with us) - will hold down the fort at home.

Here's a picture of our place in Jay. (We do rent it out, in case anyone's interested.)

We have no internet access in Jay (no landline phone, either). From now through early August, the only way I'll have to maintain this blog is by using the local public-library computer in AuSable Forks, or by bringing my laptop into the public library in Plattsburgh (a 45-minute drive away), where there's a free wireless hotspot.

I do intend to keep up blogging. It just may not be as frequent as usual. So, stay tuned...

"In returning and rest you shall be saved; in quietness and in trust shall be your strength."

- Isaiah 30:15