October 24, 2008 - Communitarians, Arise

I’m on study leave for a few days, at our Adirondacks place. I’ve got quite a pile of accumulated books and journals to plow through.

The first thing I pick up to read is the September 9th issue of The Christian Century, whose news briefs section cites some political commentary from a column by E.J. Dionne. U.S. history, Dionne observes, is a back-and-forth tug of war between individualistic and communitarian impulses. The Century summarizes Dionne’s argument: “Dionne thinks there is a communitarian correction after a period of time when the individualistic metaphor of free markets reigned supreme. McCain’s notion of honor associated with the military is more communitarian than individualistic, and Obama’s slogan ‘Yes we can’ reflects deep communitarian commitments.”

My generation, the Baby Boomers, advanced communitarian ideals through the social upheavals of the 1960s, then settled in for a long period of individual striving. Many of us traded George McGovern for Ronald Reagan, backpacks and sandals for briefcases and wing-tips. We trekked from Woodstock to Wall Street.

Our parents’ generation, the “Greatest Generation,” traversed similar territory in their time. They cheerfully pitched in with Victory Gardens and rationing coupons during the World War II years, then traded in their communitarian values to raise nuclear families in the up-and-coming suburbs.

Ronald Reagan’s political revolution was an emphatic, angry resurgence of individualism. The recent near-collapse of the financial markets – brought on by the absence of government regulation – is the natural conclusion of the Great Communicator’s program. These developments have exposed the central economic dogma of Reaganism – that unfettered individual striving will result in “trickle-down” communal benefits – as a fraud. Greed has done what greed always does, left to itself. It has nearly wrecked our society. Now, as Dionne astutely observes, both presidential candidates are speaking communitarian language again. The one who is most adept at it – Obama – seems poised to win the election.

The other night, I attended the monthly blood cancer support group sponsored by the Leukemia and Lymphoma Society. What could be more communitarian than a bunch of people sitting around in a circle, sharing their stories and seeking to uphold one another? It would seem the way to health – for us as well as for our nation – lies in facing the beast together, rather than alone.

October 22, 2008 - Keeping Faith in Anxious Times

I’ve just finished a 3-part sermon series on living with anxiety. What I had in mind, as I preached these sermons, was the current economic situation. After enduring the one-two punch of collapsing real-estate values and the Wall Street meltdown, the American public has been living with high levels of anxiety.

Here’s a short excerpt from the first of these sermons, “KEEPING FAITH IN ANXIOUS TIMES, I: REPAIRING THE CISTERN”:

“Some psychologists – borrowing language from medical science – draw a distinction between acute anxiety and chronic anxiety. Acute anxiety, they say, is related to some immediate threat. If you step out of your front door, for instance, and come face to face with a grizzly bear, that’s acute anxiety you’re feeling. No surprise, there. Yet, if you wake up each morning with a sense of free-floating dread – but have little idea where these dark feelings are coming from, nor any idea when or how you’ll break free from them – then, chances are, you’re a victim of chronic anxiety.”

Acute anxiety, anyone can understand. A newly-diagnosed cancer patient, getting ready to scoot over onto the operating table or receive that first chemo treatment, will quite naturally feel anxious. It’s the patient in remission, or maybe – like myself – out of remission but in a long-term watchful waiting regime, who feels chronic anxiety.

Here’s another excerpt, from the same sermon:

“The word “anxious” is historically related to a Latin word, angere, which literally means “to choke or strangle.” If anxiety gets its bony fingers around your neck for any length of time, you’ll soon be gasping for breath. There’s another English word that races its lineage to the same Latin root. The word is angina – which, as you surely know, describes the sharp, piercing pain that precedes a heart attack. Angina arises when one of the coronary arteries is choked off by arterial plaque, blocking oxygen from reaching the heart muscle. Anxiety, in other words, can kill you.

Another English word that grows out of this Latin root, angere, is “anger.” Anxious people, as it so happens, are often angry people. They sense the breath of life being choked off from their soul – and so they lash out, flailing wildly in an effort to remove the threat, whatever they imagine it to be.”

I borrowed some of this stuff from Peter Steinke's book, Congregational Leadership in Anxious Times (Alban Institute, 2006).

I was preaching, that day, on a passage from the book of Jeremiah. The prophet blasts certain faithless people: who – in his eyes – “have forsaken [God], the fountain of living water, and dug out cisterns for themselves, cracked cisterns that can hold no water.” (Jeremiah 2:13)

I think that cistern image has a lot to teach us. If the spiritual sustenance God provides for us is like a spring of water, then religious practice is a method of gathering that water into cisterns. It’s a beautiful thing when God provides us with what we need, spiritually, right on the spot, but it doesn’t always happen that way. Sometimes we need to rely on water stored in the cistern. If we neglect the regular practice of our faith, we can end up with “cracked cisterns that can hold no water.”

Many of us cancer survivors live with chronic anxiety every day. A significant step in the journey towards healthy survivorship is learning to recognize it for what it is, and name it – but not letting it master us.

I don’t think we ever solve our anxiety, or cure it. We’ve got to learn to live with it.

Much as we learn to live with our cancer.

October 16, 2008 - Got Dem Watchful Waitin' Blues

Today I run across a couple new 3-minute web videos on the Lymphoma Research Foundation website. Several of them seem more or less made-to-order for my situation.

One focuses on twenty- and thirty-somethings with indolent lymphoma. I don’t fit that age category, of course, but I’m still younger than the average lymphoma patient. It’s a pretty good discussion on indolent disease, and how different it is, conceptually, from other cancers:

Click HERE.

Another describes the Watchful Waiting approach to treatment:

Click HERE.

“That’s one of the differences about indolent lymphoma that’s difficult for people to get past,” says one indolent lymphoma survivor on the Watchful Waiting video. “It’s always a present tense.”

Indeed it is. Other cancer survivors are either in treatment, or in remission, or they’re cured. They get some sort of resolution eventually. We indolent lymphoma survivors live in an eternal present.

The trick, I suppose, is to find some way to get our future back again, to escape that eternal present.

October 8, 2008 - Better Living Through Web Crawling

There have been lots of technological developments in recent years that have revolutionized cancer treatment. One of the most revolutionary of all, though, is a change whose impact is indirect, even as it is massive.

You’re participating in it right now, as you read these words. It’s the Internet.

A September 29th article in the New York Times highlights the many different ways patients deal with this vast ocean of medical information at their fingertips:

“Information gives some people a sense of control. For others, it’s overwhelming. An acquaintance of this reporter, a New York father coping with his infant son’s heart problem, knew he would be paralyzed with indecision if his research led to too many choices. So he focused on finding the area’s best pediatric cardiologist and left the decisions to the experts.

Others, like Amy Haberland, 50, a breast cancer patient in Arlington, Mass., pore through medical journals, looking not just for answers but also for better questions to ask their doctors.

‘Knowledge is power,’ Ms. Haberland said. ‘I think knowing the reality of the risks of my cancer makes me more comfortable undergoing my treatment.’” (Tara Parker-Pope, “You’re Sick. Now What? Knowledge Is Power,” New York Times, September 29, 2008)

My personality type is obviously closer to the second of these two patients than to the first. One of the first things I did, even before my diagnosis was definite, was to high-tail it to library. What I couldn’t find on the library shelves, I began searching for – voraciously – on the internet. Before long, I had a basic knowledge of lymphoma and the underlying biological systems that are affected by it. My doctors know vastly more than I, of course – I never pretend otherwise – but at least we’re able to converse together with some degree of mutual understanding.

Not everyone’s like this. I know some fellow patients who put themselves, wholly and completely into their doctor’s hands, saying, “Please don’t overwhelm me with details, Doc. I trust you, and I trust you to tell me what I need to know about my condition.”

There’s no right or wrong here. It’s a matter of style.

Vive la difference.

October 6, 2008 - Got Cancer? Better Keep Your Job.

This excerpt from a recent news article tells a story that’s – sadly – all too common today, in the dysfunctional world of American medical insurance:

“Most experts acknowledge that people who have cancer or have recently beat it have a tough time finding individual coverage – a fact Angela Clay of Atlanta discovered the hard way.

Clay, 33, was diagnosed with non-Hodgkin's lymphoma eight years ago, while she was living in South Carolina. She survived, thanks to a regimen of chemotherapy, radiation and stem cell treatment, for which she was covered through her job at the time. After she moved to Atlanta in 2001, she had coverage through her job as a teacher in a day care center.

Then another center offered her an assistant manager position in 2004 – a step up with better pay but no benefits. Clay figured she'd simply buy insurance. ‘I'd go online once a month and fill out applications,’ she says. The numerous insurers she has tried turned her down, she says, and one told her she had to be in remission for 10 years to receive health insurance. ‘I've got more than two years to go,’ Clay says.

Clay still has no coverage and so must put off nonemergency medical care, including the follow-up she needs to be sure the cancer hasn't returned. ‘I'm very worried,’ she says. ‘I know I need checkups for my health. It makes me feel vulnerable.’ She sees a doctor only for emergencies, such as a severe boil she developed in January. (She's still paying off the $800 it cost to have the doctor drain it, at $20 a month.) Clay fears the stress of living without insurance will further harm her health. ‘It's hard for me to focus because I have this on my mind,’ she says.” (Jonathan Cohn, “When you are denied health insurance,” MSNBC.com, October 6, 2008)

This is a difficult position for cancer survivors to be in. You’ve gone through treatment, you’ve been declared to be in remission, you’re feeling fine – but, you’d better think twice about taking that new job, because it means switching medical-insurance carriers. You do that at your own risk – maybe even at risk of your life. Once your new employer’s insurance carrier gets wind of your medical history, they’ll drop you like a hot potato (or, they’ll accept you only if you agree to a hefty pre-existing condition exclusion – which amounts to pretty much the same thing).

Cancer survivors in remission yearn for nothing more than to get on with their lives. But, if they are in an occupation in which advancement typically happens by switching to a new employer, getting on with their work lives may be an impossible dream. Because of the pre-existing condition shell game, their cancer history has effectively doomed them to give up all hope of advancing in their profession.

It’s just one more example of the numerous cruel “gotchas” that are lying in wait for cancer survivors, in the dark recesses of our broken healthcare-funding system.

I’d love to hear the Presidential candidates respond to a case-study like Angela Clay’s story, explaining how their respective health-care plans will prevent this sort of abuse from happening.

October 3, 2008 - Register to Vote (public service announcement)

OK, it's off-topic for this blog, but what could be more important?

(Warning: Gratuitious profane language ahead. But, hey, the cause is important, and these are comics and actors, so what do you expect?)



Now, back to our regularly-scheduled blogging...

October 3, 2008 - Onion Article: "Man Succumbs..."

Check out this article from the satirical e-zine, The Onion. It’s good for a smile or two...

Man Succumbs To 7-Year Battle With Health Insurance

September 22, 2008 | Issue 44•39

DENVER—After years of battling crippling premiums and agonizing deductibles, local resident Michael Haige finally succumbed this week to the health insurance policy that had ravaged his adult life.

Haige, who had suffered from limited medical coverage for nearly a decade, passed away early Monday morning. According to sources, the 46-year-old was laid to rest at Fairplains cemetery, surrounded by friends, family members, and more than $300,000 of mounting debt....

For the rest of the article, click HERE.

October 1, 2008 - Stable Is Good

“Everything looks pretty stable.” That’s Dr. Lerner’s assessment of my recent PET and CT scan results, as we meet together for an examination this afternoon. He delivers the news in his best physician deadpan style, one I’ve grown used to over the course of our many consultations.

The doctor goes on to explain that the areas that were lighting up near my neck on my earlier PET scan are no longer lighting up on this recent one, and that there’s a small, new area lighting up on my lower back. “The problem with PET scans,” he quickly adds, “is that there are a lot of false positives – these areas are pretty small, so they could be nothing.”

They all look fine on the CT scan, he continues.

I ask about my residual abdominal mass that had measured 17% larger on my last CT scan – a measurement Dr. Lerner figured at the time could still be within the statistical margin of error (it seems the radiologists don’t start getting alarmed until such a mass shows 25% enlargement). It doesn’t look any bigger at all, on this most recent scan.

Round about this time the phone rings. Dr. Lerner apologizes for the interruption, then takes the call. It’s evidently from another doctor who wants to confer about a patient. The receptionist brings in a thick file, and Dr. Lerner spends 3 or 4 minutes sharing details similar to my own case – something about the growth rate of certain tumors, I can’t follow it all. After hanging up, he comments, “It’s nice to be able to tell someone good news for a change.”

“I guess my test results are good news, right?”

“Yes, they are,” he replies, “for your situation.”

It’s not exactly a ringing endorsement – and it’s delivered in that same deadpan style, friendly but not overly cheerful – but I’ll take it. What I think the doctor means by that last qualifier – “for your situation” – is that, with an indolent lymphoma no one looks for cure, only stability.

Stable is good. Guess I’ll watch and wait some more.

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.