September 30, 2008 - A Surgeon's Perspective on "Watchful Waiting"

Flying back from Utah the other day, I finished reading Pauline W. Chen’s insightful memoir, Final Exam: A Surgeon’s Reflections on Mortality (Knopf, 2007). Pauline is a liver-transplant surgeon, which means she’s spent her professional life at the edge of high-tech innovation. Sometimes she’s part of the surgical team that helicopters in to harvest organs from the body of a dying accident victim, pops them into an ice-filled cooler and flies them to a distant city. Other times, she’s on the receiving end of those precious deliveries, implanting the harvested liver into an otherwise-dying patient.

This work has given her a unique perspective on life and death. From the brain-dead body of a patient who’s breathing with the aid of machines, she salvages living tissue that just may save another’s life. It’s hard to imagine a more heroic occupation.

Far from celebrating transplant surgery’s technical razzle-dazzle, Pauline appeals for heightened awareness of the emotional side of medicine. She reminds her colleagues that, when the risks of surgery are too great and a patient cannot be saved, the doctor has a continuing responsibility to care for the patient’s emotional needs - rather than abandoning the person to others, out of fear of medical failure.

I was intrigued by this lengthy passage, in which she reflects on how the “watchful waiting” approach to treatment troubles many of her surgical colleagues:

“There is no mistaking the heady exhilaration you feel when you walk into the cool and ordered operating room, pull out all the technical gadgetry and wizardry of the moment, and within a few hours solve the essential problem. Surgery is a specialty defined by action. As a student of mine once said, ‘Surgeons do something about a problem, not just sit around and think about it.’

But surgeons are not alone in this doer’s paradise. While surgery, particularly liver transplantation, represents an extreme, even physicians in specialties with little or no ‘invasive’ procedures feel compelled to do. A patient visits with a problem, and the appointment is incomplete without a prescription for medications or tests or some tangible diagnosis.

Even medicine’s essential framework for approaching clinical problems – the treatment algorithm – presumes physician action. Frequently diagrammed in textbooks and medical journals, these algorithms outline step-by-step therapeutic plans for different diseases. For every point along the algorithm there are several possible outcomes that in turn may have several of their own possible therapeutic options. On no branch of the decision tree, however, is there a box reserved for Do nothing or Hold tight or Sit on your hands. Instead, if no treatment is required, we describe the waiting as an active, not a passive, period. Treat with intravenous antibiotics for six weeks and then reassess may be part of the algorithm. Or we may decide on a course of what is euphemistically termed expectant management or watchful waiting, as if our therapeutic intervention is just being held temporarily at bay. Even in deciding to wait or do nothing, we imbue these periods with action. It is as if we are dynamically managing time and at the end of that time there may be more treatment for us to initiate.

We can confuse these interventions with hope, particularly at the end of life, and equate more treatment with more love. Any decision to hold or even withdraw treatment becomes near impossible, and not treating a patient the moral equivalent of giving up. Moreover, once treatments have started, there is an obligation to the interventions themselves. Having done so much already, doctors – and many patients and families – find it nearly impossible to let all their efforts simply drop.

In an attempt to display competency or undying love, we lose sight of the double-edged nature of our cutting-edge wizardry. We battle away until the last precious hours of life, believing that cure is the only goal. We inflict misguided treatments on not just others but also ourselves. During these final, tortured moments it is as if the promise of the nineteenth century has become the curse of the twenty-first.” (Pp. 147-148)

Quite naturally, I’ve been inclined to view the soul-numbing tedium of watchful waiting from my own perspective as a patient. Pauline’s book has helped me glimpse it from the viewpoint of my doctors as well. Turns out, we both wish we could do more.

The contemplatives have long taught that intentionally doing nothing – doing it with our whole being – is one of the most difficult of spiritual tasks. This is the point Martin Luther was getting at when he observed how his puppy jumped up on the table, then waited expectantly for a morsel of food dangled from the hand of his master. “Oh, if I could only pray the way this dog watches the meat!” Luther reflected. “All his thoughts are concentrated on the piece of meat. Otherwise he has no thought, wish, or hope.”

Fully engaged and mindful waiting is my own spiritual challenge these days. There’s something in me that wants to reach relentlessly into the future, fretting about what treatment may await me down the road. Ultimately, this is an abdication of the present discipline of waiting that has been given me.

“Let us then labour for an inward stillness –
An inward stillness and an inward healing;
That perfect silence where the lips and heart
Are still, and we no longer entertain
Our own imperfect thoughts and vain opinions,
But God alone speaks in us, and we wait
In singleness of heart, that we may know
His will, and in the silence of our spirits,
That we may do His will, and do that only.”

– Henry Wadsworth Longfellow, “Christus: A Mystery,” in The Poetical Works of Henry Wadsworth Longfellow, vol. 5 (Houghton Mifflin, 1851), pp. 313-314.

September 26, 2008 - Altitude

I've been living, for the past several days, at over 8,000 feet above sea level.

In my capacity as Stated Clerk of the Presbytery of Monmouth (a position I hold in addition to my pastoral responsibilities at Point Pleasant Presbyterian), I've been attending the Fall Polity Conference of our denomination. The conference is being held at the Snowbird ski resort in Utah: a very pleasant place to be, amidst some breathtaking mountain scenery. Most church conferences I attend aren't at such a luxurious place, but the church got a deal on the accommodations because it's still the off-season.

As with other times I've been at this altitude, I'm really noticing the effect of the lower oxygen levels on how I feel. Walking up a set of steps I'd ordinarily think nothing of, I find myself having to pause at the top to catch my breath.

I suppose this is what being elderly feels like - or, perhaps, what being anemic feels like. The quantity of oxygen circulating in our blood is so crucial to health and well-being. If I were here for a longer period of time, I'd acclimate to the higher altitude and would eventually return to feeling normal. I fly back home tomorrow, though, so the only thing that's going to end my low-level feelings of fatigue will be stepping off the plane at close to sea level.

Back during my chemo treatments, the doctors were closely watching my hemoglobin levels. I was fortunate in that my red blood-cell levels never dropped below normal, which would have made it necessary to take drugs like Aranesp or Procrit to build them back up again. I felt plenty weak, though, even with my blood cells at normal levels.

The persistent feeling of shortness of breath brings back my memories of cancer fatigue - how, during my final weeks of treatment, I found it difficult even to walk around the block.

It's all in the blood - and, as long as I've got a blood cancer, I'm going to find myself wondering, from time to time, whether I'll ever experience such feelings again.


"In God's hand is the life of every living thing
and the breath of every human being."
- Job 12:10

September 22, 2008 - Scanner Doubleheader

Today I go for a scanner doubleheader: a PET scan and a CT scan at Jersey Shore University Medical Center.

I’m using Jersey Shore this time (a Meridian Health hospital), rather than the for-profit Atlantic Medical Imaging (where I had my last PET scan, a PET/CT fusion) because my insurance situation has changed. Because Claire’s now working full-time for Meridian (as director of the Bereavement Program of Meridian Hospice), I’ve now got secondary medical insurance through QualCare (Meridian’s employee health-insurance provider). They reimburse at a higher rate for services performed at Meridian facilities, so it makes sense to switch providers.

I checked with Dr. Lerner about this first, of course. The message came back, through one of his office staff: if it would save me money, a PET scan at Jersey Shore, followed by a CT scan, would be fine.

I’m just as glad. I had a good experience at Atlantic Medical Imaging, but I’m aware of how much of a financial threat these physician-owned, freestanding diagnostic and surgical facilities are to hospitals. They skim off many of the most profitable portions of the hospitals’ trade, leaving them to handle less lucrative procedures – not to mention the charity-care patients who cannot pay. I went to Atlantic initially because they were the only facility in the area offering the PET/CT fusion scan, but since Dr. Lerner wants me to have a regular CT scan along with the PET scan anyway, it seemed like the right time to go back to patronizing the hospital.

Things go well, all in all. The PET scan technician tries and fails twice to get my IV line in properly, then has to call a nurse – but that’s a small matter. The PET scanner itself is located on the back of a tractor-trailer truck, that pulls up to a special access bay at the side of the hospital. The truck shuttles this expensive machine between several hospitals on a regular basis. Once you step aboard, though, it feels no different than any other room – a little smaller, that’s all.

It’s not pleasant to lie on my back, absolutely still, with arms extended over my head, for the 30 minutes or so the PET scan takes, but I get through it. Fortunately, the tech guides my hands to a mesh strap that some thoughtful designer included at back of the headrest. By hooking my thumbs through the strap, I’m able to take some of the pressure off my upper-arm muscles. Ah, the little things – they make such a difference. After the protracted PET scan, the CT scan is a piece of cake.

I’m not sure to what extent these scans are routine, for me. Last time I met with Dr. Lerner, he said he wanted me to go for another CT scan before our next 3-month appointment, but he was going to wait to decide about a PET scan until he’d seen the results of my detailed blood work. I guess there must have been something in those results that makes him want to err on the side of caution – though his office staff provided no details when they told me the doctor’s written instructions indicated a PET scan as well as a CT.

Maybe this is cause for concern, or maybe it’s not. I’ve been feeling a little anxious about it. I’ll find out for sure at my next appointment with him on October 1st – or maybe sooner, if I get a phone call reporting on my test results.

In the meantime, I’m in that medical-test limbo that’s so familiar to anyone who’s gone for a radiological scan: nobody can tell me anything until after the radiologist has examined the signs from the oracle.

(In case you're wondering about the picture to the right, it's the Oracle at Delphi - obscure mythological reference.)

September 16, 2008 - Know Your Nodes

Yesterday, it seems, was World Lymphoma Awareness Day – and I missed it.

Actually, I’d never heard of World Lymphoma Awareness Day. I think (though I can’t be sure) it may be something new.

Anyway, one of the critters the lymphoma organizations trotted out for their dog-and-pony show was an online quiz called “Know Your Nodes.”

It’s not so easy. I only got 70%. See how you do.

Click HERE.

September 14, 2008 - What God Can Do with a Guitar and a Brain Tumor

Recently, I’ve been enjoying the music of David M. Bailey, a cancer survivor and singer-songwriter. He comes from a pretty well-known family in Presbyterian circles – he’s the son of biblical scholar and missionary educator Ken Bailey.

At the age of 30, after David started experiencing severe headaches, doctors discovered a massive brain tumor. After surgery to remove the tumor, they gave him six months to live. Twelve years later, he’s got 17 albums to his name and maintains a busy tour schedule.

In the following radio interview, David tells the story of how his cancer diagnosis completely re-oriented his life, leading him to quit his corporate career to take up the guitar he’d laid aside ten years before. At first, it was a crisis of faith, as he raised the “Why me?” question. But then, he had a sense that God was directing him to move on to a different question: “What now?” He started performing and touring – and, in the midst of it, discovered “what God can do with a guitar and a brain tumor.” At first, David admits, people treated him as a curiosity: “boy with brain tumor surviving and singing.” Those first concerts grew into a new, full-time vocation, a significant musical ministry with special appeal for cancer survivors:



Here’s a music video of his, a song called “Tucson.” I take it as a sort of anthem for cancer survivors:



This video is more of a homemade production – sound quality leaves something to be desired – but it’s a good song. It’s called “Live Forever”:

September 11, 2008 - Moment of Silence

A few moments ago, while I was getting dressed, I tuned the TV to the news, as I often do in the morning. I was greeted by silence. Dead air.

The screen showed a somber crowd of people at a public gathering in New York City: politicans behind podiums, rank upon rank of white-gloved police officers and firefighters.

Of course, I said to myself. It’s 9/11, the seventh anniversary. I was thinking of it just yesterday, but this morning I arose without giving a thought to this occasion – to the day, as Mayor Bloomberg just reminded the television audience, “our world was broken.” It was the day our lives changed forever.

I sat on the bed in silence, joining – for that single minute – all the others in so many places who are putting aside everything else in their busy lives to remember. It’s remarkable how long a minute can feel, when you’re doing nothing to fill it.

Memories diminish with time. The day the planes were cast down from the sky, I was scrambling to put together a hasty worship service, fashioning a place of refuge for the hordes who were turning to the church during that dread season of loss. One year afterwards, we were preparing for a more carefully-planned service, one that was also well-attended. Two years out, we were ringing the church bell and opening the doors for those who wished to pray. Seven years later, I confess, I had to be reminded by the television of what day it is.

It’s the way of the world. The more time intervenes, the dimmer becomes the recollection. Who remembers Armistice Day anymore, which has long since morphed into Veterans Day? Who pays more than a moment’s notice to Veterans Day, other than those who have personally lost loved ones, for whom the loss still aches?

An article on cancer in the current Newsweek puts the statistics of life and death into perspective. The passenger load of three jumbo jets a day, every day, 365 days a year: that’s how many Americans die of cancer. It’s 9/11 every day, for at least some people in our country. Our government will spend billions on homeland security to prevent another terrorist attack from happening, but still underfunds cancer research.

I’m not begrudging those dollars spent on metal detectors in airports, nor on hunting down Bin Laden. We need to do these things. Nor am I begrudging all those New Yorkers their poignant moment of silence. (Our moment of silence. It belongs to all of us.) Yet, I am led to reflect – on this bright and beautiful, yet somber day – the death of any of us before our time deserves a moment of silence.

In the words of John Donne, “Any man’s death diminishes me, for I am involved in mankind.”

September 9, 2008 - Cancer Misinformation

OK, here’s a curious news item. Someone’s done a study of misinformation about cancer, and how spurious beliefs vary according to whether a person lives in the industrialized or the developing world:

“Researchers interviewed 29,925 people in 29 countries last year to compare data on perceptions about cancer risk factors among high-, middle-, and low-income countries.

Among their findings was the fact that people in high-income countries were least likely to believe that drinking alcohol increases the risk of cancer, when, in fact, cancer risk rises as alcohol intake increases. Specifically, 42 percent of the people in the high-income countries said alcohol does not increase the risk, compared with 26 percent of those in middle-income countries and 15 percent of those in low-income countries.”

So, first-world people insist on believing, despite the evidence, that they can tipple risk-free. They also choose to believe – again, contrary to evidence – that eating a diet high in fruits and vegetables will do more to lower their cancer risk than abstaining from alcohol. It won’t. Alcohol is a far bigger risk.

First-world people also believe exposure to air pollution is more carcinogenic than drinking. It’s not.

People in middle- and low-income countries tend to take a Que Sera, Sera attitude towards cancer, believing not much can be done to treat it. Folks in wealthier countries – evidently more used to seeing baldheaded cancer survivors walking around – believe that aggressive therapy can make a difference.

Generally speaking, “people in all countries were more ready to accept that things they could not control (e.g., air pollution) were risk factors than things they could control (e.g., overweight, which is an established cancer risk factor).”

I’m still processing these observations. I don’t quite know what to make of them. Of course, it’s humbling to be reminded, once again, of how cancer treatment is pretty much the preserve of the wealthy (with “wealthy” defined according to a global standard, to include pretty much everyone in Europe and North America). In many parts of the two-thirds world, a cancer diagnosis is still pretty much a death sentence.

Yet, from Basel to Bangladesh, there’s still a lot of unreasoning fear out there when it comes to cancer. It’s a better fit for our frame of reference, somehow, to see cancer as an unstoppable force that descends with devastating randomness (caused by something like air pollution that few of us can do anything to prevent), rather than as something that can be a consequence of our own lifestyle choices.

Cancer is a great drive-in movie screen, on which we tend to project our desires as well as our fears. No wonder it can be such a hard subject to talk about.

September 7, 2008 - Living in the Future

Today, I run across a column by radio psychologist Dan Gottlieb that has a lot to say to anyone with a chronic illness – or, well, to just anyone. He’s writing about fear – about how so many of our anxieties and frustrations in life can be traced back to an underlying fear of death.

Reflecting on the “battle” language so many of us use when speaking of cancer, he observes: “Most of us battle things like this not because we are pursuing a vision of victory, but because we are terrified of what will happen if we don't fight. And what is our ultimate fear? Death.

All things living one day stop living. But we may be the only species that knows we will die. How we deal with that piece of information day to day can determine the quality of our lives.”

A little later, Dr. Gottlieb goes on to share this bit of practical wisdom:

“All fear is about the future. And when confronted with the fragility of life, it’s hard not to think about the future. When we do, however, we are at risk for living in the future. That is the real tragedy, because living in the future takes us away from the life we have today.”

“Living in the future” – is that really such a bad thing? When it comes to technology, for example, there are rewards aplenty for those who are forever scanning the horizon, scouting out the next new thing. The “early adopter” gets the iPhone, if not the worm. In the world of finance, stock analysts who can pull off the trick of living in the future – however briefly or imperfectly – rake in millions.

Yet, these are specialized cases. When it comes to everyday life, living in the future is rarely a good thing. Those of us who do so miss out on the present. And the present – as messy and chaotic as it can sometimes be – is where we live our lives.

Gottlieb continues, “Readers who are hoping for a list of practical ‘tips’ of the type we so often see in the news media may be disappointed. I can only offer one big one: Don’t spend so much of your energy pursuing the life you want or avoiding the life you fear. Have the faith to live the life you have - and live it fully, with great love and gratitude.”

Amen.

Now, here's a little something from the recent "Stand Up 2 Cancer" TV special. Just enjoy it - in the present:

September 3, 2008 - Another New Cocktail

No, I’m not talking about some concoction served in an umbrella glass, under a buzzing neon light. I’m talking about a new combination of anti-cancer drugs that may help certain lymphoma patients.

“Novel Clinical Study For Lymphoma Patients Beginning,” reads the headline of yesterday’s internet news article. It heralds a clinical study, investigating whether patients receiving a new combination of two chemotherapy drugs will do better than those receiving more conventional treatments. The drugs are for patients with diffuse large B-cell or mantle-cell lymphoma. Diffuse large B-cell was the aggressive type of cancer I had, which has (fortunately) not come back since my R-CHOP chemo treatments in the spring of 2006. If it ever comes back, I could potentially benefit from tossing back a few of these new cocktails (well, not literally tossing them back; they’d be delivered through IV tubes).

The drugs being studied are bortezomib, marketed as Velcade, and vorinostat, marketed as Zolinza. (Where DO they come up with these crazy names?) Bortezomib – a comparative old-timer in the world of cancer drugs – has been around since 1995, and vorinostat is a newer drug, approved by the FDA for treatment of another type of lymphoma (cutaneous T-cell) less than two years ago.

These types of clinical trials go on all the time. This one’s a phase II trial, one of the riskier varieties. As I understand it, phase I trials are truly experimental – only the sickest patients get these drugs, the unfortunate souls for whom nothing else is working. Based on experiments with laboratory animals (the proverbial “guinea pigs,” whether or not they actually belong to that species), the scientists are reasonably sure the drug will help humans, but they can’t be absolutely sure. So, they pick a few people who have no other choices, give them the new drug, then sit back and watch what happens.

If the experimental subjects do better than expected, the scientists move on to phase II. They’re still working with a relatively small group of desperately ill patients, but this time they’re trying to figure out the dosage. In this stage, patients sometimes experience severe side effects, as the experts try to get the dosage right. Neither phase I nor phase II trials are a walk in the park for the volunteers who participate in them – although they’re usually willing enough to take the risk, because they have few other alternatives.

If the signs continue to be good, the researchers move on to a stage III trial. By now, they know the drug works, but they need hard data comparing it to other drugs. This is the sort of trial that involves thousands of patients all over the country (or even the world). It includes randomization – there is a randomly-selected control group of patients, who are given some other, more established drug instead of the one being studied. (In cancer trials, placebos are rarely given to the control group, for ethical reasons.)

If the new drug makes it through this third gate, it will probably receive FDA approval. The company then dispatches its eager sales force out to doctors’ offices, with their free pens and sandwich trays for the office staff. After the drug is out there for a little while, stage IV trials follow, as the benefits and side-effects of the treatment protocols are studied further, over time.

Speaking as a cancer survivor, it’s encouraging to read of new developments like these. I’m glad the pharmaceutical researchers are out there, dripping fluids from eyedroppers into petri dishes, or whatever they do. It’s a long road, from the genesis of an idea in a laboratory to a chemo nurse hanging a bag of the stuff on an IV pole. Drug companies have to put up millions of bucks before they see a penny of profits, and for every drug that makes it into production, many more die on the vine, never making it out of stages I or II.

Will I ever receive this yet-unnamed drug combo? Who’s to say? It just goes to show how dynamic and uncertain the field of cancer treatment continues to be. I’m in a slow, watch-and-wait mode right now. It’s remarkable – and scary – to think that the drug that could help me one day may still be in the early theoretical stages, years away from production.

We live with that uncertainty, and with that hope.

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.