September 11, 2010 - 9/11 Every 2 Days

That's the title of an article by Betsy DeParry, whom I've come to know a bit through the online lymphoma community, and through reading her cancer memoir, The Roller Coaster Chronicles. What she's referring to is a well-publicized statistic that 1,500 people die every day from cancer in this country. Approximately 3,000 people were killed in the 9/11 attacks, which means cancer brings about another 9/11 every couple of days.

Cancer doesn't garner the same level of response - and understandably so, from a psychological standpoint. The 9/11 attacks were sudden, brutal, inhuman - and completely unexpected for most Americans. They turned life in our country on its head, and we're still living through a lot of the aftermath.

We're wrapping up one war and still deeply embroiled in another. After conducting those wars in a way our nation has never prosecuted a war before - essentially putting the costs on a credit card, neither raising taxes nor asking for financial sacrifice from the general public - our economy is in a shambles.

More than that, a lot of us are living with a level of fear and anxiety we've never known before. The contentious, fear-driven debate over the construction of the Park 51 Muslim community center in lower Manhattan - not to mention the media's hysterical response to the bigoted wing-nut minister who wanted to hold a Qu'ran-burning party - is ample evidence of that.

I understand the Federal budget is so loaded down, now, with expenses for national security - and those programs are being administered by such a vast, disconnected profusion of agencies, funded in some cases by money from secret budgets - that no one really knows exactly how much we're spending, nor for what.

Betsy doesn't make any observations like these in her article - they're my own, and I'll claim them - but she does recall how, ironically, it was on the anniversary of 9/11 several years back that she received the single radioimmunotherapy (RIT) treatment that has kept her cancer-free ever since. For her, personally, 9/11 is a day of celebration.

That, of course, is an ambiguous legacy, as she herself reflects:

"Yet eight years after winning FDA approval, the two RIT drugs are still caught in the health system's for profit stranglehold that has limited access to between 5 and 10 percent of the patients who might benefit from them. That's like sending the finest emergency crews and state-of-the-art equipment to rescue 5 to 10 percent of the victims of any tragedy and sending the bucket brigade to help the rest. Wouldn't we all be outraged? Just as maddening, targeted therapies like RIT have been hailed as the future of cancer care, but interest in developing RIT drugs for other types of cancer has waned because the RIT drugs for lymphoma have not been commercially successful.

Cancer claims 1,500 Americans every day. That's 9/11 every two days. And it's simply unacceptable, especially when lifesaving treatments like RIT are available for some.

Yes, I'm grateful that eight years ago today, RIT restored my health and kept my family whole, but my celebration is tempered with respect for the families who lost loved ones on that tragic morning a year before RIT rescued me. And my individual triumph over cancer is overshadowed by sorrow for the families who will suffer so long as profit takes precedence over people."

Are we really saving lives with all the wild spending on domestic-security programs and research into arcane military technologies, many of which may never see the light of day on a battlefield? No one can say. Yet, it's far more certain that the money we're NOT spending, as a nation, on delivering health-care technologies we've already developed and tested to sick people who truly need them is causing more deaths than any terrorist attack ever did.

On 9/11, let us honor the memory of those who have died, and the pain of those who miss their loved ones still. Yet, let us also redouble our efforts at bringing life and health to those who can still be saved.

August 16, 2010 - The Big C

This evening, I take a look at Showtime’s new “dramedy” on cancer – The Big C, starring Laura Linney. We don’t have Showtime on our cable contract, but I happen to notice that the full first episode is available as a preview on Showtime’s website.

I presume the 30-minute video I saw was the whole episode. There was a little disclaimer about it having been edited for online viewing, but I take that to mean that the curse words were muted (which they were).

Laura plays Cathy, a Minneapolis high-school teacher who’s just learned she’s got stage 4 melanoma. She declines treatment, and decides not to tell anyone, not even her family. The first episode is all about her bouncing from one wildly inappropriate, self-destructive behavior to another: impulsively deciding to have a swimming pool dug in her front yard, without getting the necessary permits; treating an obnoxious summer-school student with a savage cruelty the writers likely intend to be funny, but isn’t; telling off the cranky, reclusive old lady who lives across the street; overindulging in goopy desserts, liquor and even a cigarette she confiscated from a student.

Yes, I know diagnosis is a terrifying, world-shaking time – and everyone deserves to be cut a little slack in the midst of it – but no one is that crazy.

Linney does a spectacular role of acting the part, but it’s the script that’s over the top. This is a shame, because we cancer survivors could really use an actor of her caliber telling our story. She gets it right on the gut level, in a way that makes viewers identify with her, but she’s shackled by that unrealistic script.



The scene showing her interaction with her doctor is particularly problematic. She tells someone she’s going off to the dermatologist, but this guy is doing more with cancer treatment than any dermatologist I’ve ever heard of. I suppose, in retrospect, he’s really meant to be her oncologist, and the dermatologist story is a little cover-up on her part, but the script never reveals that.

Even as an oncologist, though, he’s unrealistic. There’s a flashback showing Cathy in his office, viewing her tumor on an x-ray film. It’s clearly an x-ray, not a CT or PET Scan.

He also admits to Cathy that she's his "first." First what? Cancer patient? (Not likely, given his years of specialist training.) His first terminal patient? (Again, not likely he missed that experience, if he's been an oncology resident). His first patient to decline all treatment from the get-go? (Maybe a little less unlikely, but not much.) His first melanoma patient? (If that's true, Cathy would be well advised to run as fast as she can, putting as much distance between herself and this rookie as possible.)

So, the writer and director would have us believe that a sensitive and intelligent professional in her late 40s or early 50s, with everything to live for, is going to chuck it all, declining treatment and keeping her diagnosis secret from everyone in her life, based on something she saw on an x-ray film in her doctor’s office? No follow-up tests. No second opinion. Not even a careful weighing of the treatment options, before coming to that momentous decision.

“I’ve always loved my hair,” Cathy tells her doctor, explaining why she’s ignoring his medical advice and declining treatment. “I cry every time I get it cut.”

Now, maybe that’s a feeble attempt at a joke on her part, but if that’s not the case (and there’s no clear indication it is), then the Minneapolis Board of Education is saddled with an astoundingly airheaded high-school history teacher.

The scene is both medically and psychologically inaccurate, and that’s a real missed opportunity – especially since what happens in her doctor’s office is the premise on which the whole series is based.

What, Showtime was too stingy to spring for a decent medical advisor?

Washington Post reviewer Hank Stuever makes a similar point:

“I’ve known people whose loved ones avoided treatment and kept cancer a secret until it was too late. Cathy’s decision is ‘The Big C’s’ most difficult hurdle – a wildly selfish and passive-aggressive act that is difficult to find funny. It also doesn’t seem believable in Cathy’s case – she just seems too smart and articulate to deliberately withhold something like this, unless she’s just being mean. Whatever her reasons, Cathy’s secret cancer does provide ‘The Big C’ a doorway to a fascinating story arc, in which the people in her life come across as unfailingly more selfish than she’s attempting to be.”

While this first episode does a not-so-good job of portraying the personal and medical aspects of a newly-diagnosed cancer patient’s life, it does depict one thing accurately: our society’s fear of cancer. The series, of course, is really about death, and what it means to go on living in its shadow with strength and dignity. It’s significant that the disease chosen as the vehicle for this philosophical and psychological exploration is cancer. The problem is that not all cancers are alike, and not even a metastasized, stage 4 melanoma is a reason to decide to forgo all treatment, especially for a newly-diagnosed patient.

Those quibbles aside, I do recommend the series, based on what I saw. I’d watch it myself if I had Showtime. Guess I’ll have to rent the subsequent episodes on DVD, once they’re available.

October 31, 2009 - A Scary Thought for Halloween

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

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

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

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

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

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

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

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

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

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

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

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

Hope we wait a long time.

Now, here's a little Halloween fun:

September 4, 2009 - PTSD?

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

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

She then quotes D.H. Lawrence:

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

– Cancer Is Hilarious blog, August 13, 2009

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

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

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

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

May 9, 2009 - A Most Useless Place?

Dr. Wendy Harpham sent me a link to the blog of Rabbi David Wolpe, who also has non-Hodgkin lymphoma. Several years before that, he had surgery for a brain tumor. Here, he writes about receiving his last Rituxan infusion, ending a two-year follow-up regime after chemotherapy for NHL:

“Recently I had the final infusion. But I was not at all sure that pulling away the safety net was a cause for celebration. My doctor poked his head into the curtained chamber to assure me that he expected a long remission. Kind of him, but what could he say?

Remission is cancer's suspended animation. The renegade cells are poised to return but no one knows when. It could be a month or a decade; for my type of lymphoma (one of the more than thirty varieties of Non-Hodgkin's lymphoma) there is no cure. So I am stuck in what Dr. Seuss – in a book I used to read to my daughter – calls “a most useless place. The Waiting place....’”

A most useless place. That phrase does sum up how it feels, sometimes. Unlike David, I’m out of remission – have been for a couple of years – but there are days when I, too, feel like I’m in suspended animation.

David’s experience is similar to mine, too, in that he is a member of the clergy, serving a congregation:

“I had the strange, surreal experience of hearing my congregants' shock that this could happen to the family of the Rabbi – as though professional piety was a shield against disease. As though God played favorites.

Right before my brain surgery I appeared in front of the congregation and asked them for their patience and their prayers. Three year later I was standing before them, bald. I witnessed the realization in their eyes that there are no guarantees, no protected people. No one is safe.”

No, no one is safe. Yet, that observation ought to be surprising only to those who believe God is some cosmic puppeteer, manipulating the lives and loves and illnesses of us poor, benighted souls who dwell below. Is cancer a thunderbolt, cast down in righteous anger from Olympian heights? I’ve never seen it that way – although I’ve met plenty of people, both inside and outside my church, who fear it may be.

Granted, there are strains within the biblical tradition that portray God that way. God punishes the ten spies who brought back an unfavorable report of the promised land by killing them with plague (Numbers 14:37). God gives the adulterous David and Bathsheba’s infant love-child a fatal illness (2 Samuel 12:15-17). Even worse, God famously afflicts Job with boils, not because he’s an unjust man but simply because God wants to win a debate with the devil.

Yet, before everything is said and done in the Hebrew scriptures, the Lord is portrayed as “merciful and gracious, abounding in steadfast love” (Psalm 103:8). That’s the majority witness. When it comes to the New Testament, of course, God not only sympathizes with human suffering, but personally undergoes it, becoming incarnate as Jesus Christ.

Yet, the ancient images of a capriciously angry God, that dread smiter of sinners, are maddeningly persistent. “What did I do to deserve this?" is the anguished cry we pastors hear again and again, whether spoken or unspoken, standing at the foot of many a hospital bed.

No one is safe. We’re all going to die. Some of us sooner than others. If we’re spared from some fatal catastrophe on the highways, we’re all going to hear some doctor admit to us, someday, “I’m sorry, but there’s nothing more medical science can do for you.” Is this God’s judgment?

The story of Adam and Eve in the Garden suggests it is. Death is, that story suggests, God’s judgment on the entire human race. That may be so, but, unless we toss out all the biblical witnesses to God as patient and merciful, it’s hard to make a case for God micro-managing the entries in our individual medical files. We belong to a race for whom that dark, old lullaby is all too true:

“Hush, little baby, don’t you cry,
for you know your mama is born to die...”

The divine decree of death is meted out to the human race en masse, not on a case-by-case basis.

The fact of death is perhaps the deepest mystery we children of Adam and Eve seek to plumb – as Rabbi David has himself come to realize:

“For now I am just waiting. I am trying to find my own way through this because, inevitably, I will be asked how I did it. Rabbis are supposed to be figures of authority and calm. It was hard enough to reassure my congregation that a fickle universe does not mean that God is absent. That belief does not indemnify me against adversity. That my faith through all this is unshaken. How does one live, Rabbi, is the question my congregants ask, of not so directly. Tell me, Rabbi – it is your job to know.

My answer, I now realize, is: Live as if you are fine, knowing that you are not. Death is the overriding truth of life but it need not be its constant companion. My safety net is gone. I feel, as all people in remission do, that each time I fly my hand may slip from the trapeze. But to live earthbound is to give the cancer more than it deserves.”

The place David and I find ourselves in may feel, at times, like “a most useless place.” On deeper examination – and, viewed through the eye of faith – it turns out to be anything but.

January 10, 2009 - Walking the Beam

This past Wednesday, I had a routine appointment with Dr. Lerner. It went as so many appointments have gone before: a port flush and blood draw, then a consultation in one of the examining rooms. The good doctor looked through my chart, listened to my heartbeat and breathing and felt for enlarged lymph nodes in the usual places: on my neck, under my arms and in my groin.

There was nothing to write home about, as they say. No change. More watch and wait.

Dr. Lerner ordered another PET/CT Scan (my last one was in September). I’ll see him again in three months. Should the scan turn up anything unusual, he’ll call and ask me to come in sooner.

“How soon do you think it will be before the cancer’s big enough to treat?” I ask him, as he’s getting ready to leave.

“Impossible to say,” he replies. “This next scan could reveal something. Or, it could be years.” He gives me a little smile, before moving on to the next patient.

I’ve been looking through another of Dr. Wendy Harpham’s books, After Cancer: A Guide To Your New Life (Norton, 1994). I’m not sure if the “after cancer” label applies to me, but I’m surely “after treatment,” so I figure I may find something useful in those pages.

As it happens, I do. Wendy uses the metaphor of a gymnast walking the balance beam:

“Consider an analogy: Most of you could walk the length of a six-inch-wide beam placed on the floor. With the ground just inches away, you would focus on the beam and maintain your balance easily. If this same beam were raised five feet above the ground, most of you would weave and waver, flapping your arms as you tried to maintain your balance before falling off to the side. The beam would be exactly the same, yet the distraction of the ground five feet below would cause you to lose touch with the beam and lose your balance. Gymnasts learn to focus on the beam, not the ground. With practice, they rarely fall. When they do fall, they get right back on the beam. You, as a cancer survivor, must learn to focus on your present life, not on the uncertainties and unknowns of your future. It is a skill that can be learned and must be practiced.” (p. 214)

So, that’s what I’m doing, with all these doctor’s visits that reveal nothing worthy of note. I’m learning a skill.

Is my balance beam close to the ground, or high in the air? Impossible to say. Keep your eye on the beam, Carl. Keep your eye on the beam.

November 21, 2008 - Always On My Guard

Busy week. So busy, in fact, that I’ve been meeting myself coming and going, as they say.

Diane, our church secretary, gave notice a couple of weeks ago – early retirement – and, as of this week, is no longer on the job. We’re muddling through with the help of Dottie, our part-time secretary, who’s graciously agreed to give us a few extra hours. Last week, we ran an ad in the classifieds for our modestly-compensated, 30-hour-a-week position. Bam! In no time at all, there was a stack of over 120 resumes spilling off my desktop. (That compares to about 25, the last time we ran a similar ad in response to a secretarial vacancy.)

I’d originally booked the classified ad to run for 10 days. I called the newspaper up and canceled it after 4.

It’s a comment on the state of the economy – not only the sheer number of applicants, but also who they were. Real-estate agents. Legal secretaries. College graduates. Even two or three people with MBAs.

It’s also a comment on the state of health care in America – because, even though our pay scale is barely competitive with for-profit businesses, we do offer excellent health-care benefits: Blue Cross/Blue Shield, through the Presbyterian Pension Plan, for the employee AND family. I think that’s what sent them flocking to our door (or, I should say, to our e-mail address and fax machine). Decent, employer-funded medical insurance with a 30-hour-a-week position is pretty uncommon, it would seem.

But, I digress. I started commenting on how crazy-busy I’ve been, as a prelude to talking about an annoying little medical problem I’ve developed. It may or may not have been exacerbated by lack of sleep.

I’ve got a mouth ulcer, inside my cheek opposite my gums, that’s getting more and more painful. My cheek’s even starting to get a little swollen. Time to see the dentist, I guess. I wouldn’t want to think it’s some kind of abscess, though I suppose it could be – even though there’s no pain coming from any of the nearby teeth.

I have to confess, though, that one of my first thoughts was, “What if it’s cancer?” My rational mind says it couldn’t really be lymphoma, because I’m not aware of any lymph nodes in that part of the face (I checked a couple of anatomy diagrams on the web, just to be sure). The very fact that this thought came to mind, though, is a side-effect of my cancer survivorship.

The thought of recurrence is never far away – even more so for someone like me, whose cancer has already recurred, though it’s been advancing at a snail’s pace.

Most likely, it’s a minor dental problem of some sort – although it’s hard to keep my mind from jumping to the worst possible alternative.

I suppose my mind will always play such tricks on me. Goes with the territory, I suppose.

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.

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:

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.

July 10, 2008 - Loss of Control

A friend of ours, Mary Beth, sent me a link to a doctor’s blog, “Musings of a Distractible Mind,” by Dr. Rob, an internal medicine doctor from the Southeastern U.S. It’s an insightful and witty blog – well worth a visit.

I was interested in a post, “Dangerous Information,” from June 25th. In it, Dr. Rob engages in a good-natured rant about patients who habitually question the prescriptions he writes:

“A patient left me a message earlier this week: ‘I was reading the information on the drug that Dr. Rob prescribed, and I am really worried about it.’ He went on to say he was faxing me the prescribing information, just in case I didn’t realize the risk of the medication.

I hate it when people do this. Do they realize that I studied for eight years and have practiced another thirteen? Why would I prescribe something for them that I don’t know about? Why would I put my name behind a ‘dangerous’ prescription? Why would they bother coming to me if they thought I did not know these things?

I don’t really take it as a personal insult, and I do feel that it is fine to question the doctor. I am sure it has happened that I have given prescriptions with interactions and/or side effects that I did not think of, but there are some levels of questioning that cross the line. I am an internal medicine doctor, so medications are my tool. Would you ask a surgeon, ‘Are you sure you should make a midline incision? Do you think that a lateral approach may be better?’ Do you tell a cardiologist, ‘I read on the Internet that the non drug-eluting stents are better than the drug-eluting ones’? Do you ask the radiologist, ‘Don’t you think that density could represent pleural plaque rather than an infiltrate?’ Probably not.”

I posted this comment in Dr. Rob’s blog:

I’m not sure most patients who question doctors’ prescriptions do so because they don’t trust the doctors. I think they do it for the same reason so many people are obsessed finding that miracle food (or avoiding that dangerous food) they imagine will prevent cancer. It has to do with loss of control.

Unlike submitting to a surgeon’s decision on where to place the scalpel, popping a pill into our mouths is something we do have some small measure of control over. And so, some of us hang onto that tiny shred of control, even if it makes our doctors suspect, sometimes, we have no confidence in them.

A great many illnesses happen regardless of how we choose to live our lives: and that truth is a hard one to absorb. We like to imagine the world is a fundamentally safe place for people who work hard and try to do the right thing, when in fact it’s not. Bad things do happen to good people. Most of us would rather cling to the illusion that we are masters of our own destinies.

I've got non-Hodgkin lymphoma, a disease for which there are few known environmental or inherited causes. Some unlucky people just get NHL, and medical science doesn’t know why. A cancer like mesothelioma isn't like that. Most cases of that disease, I've read, result from asbestos exposure. Luck has nothing to do with it (unless you count the decision to take a job in an insulation factory in the 1960s a matter of bad luck). The same goes for people with leukemia who were living downwind from Chernobyl when that nuclear power plant melted down. A person with asbestos-related or radiation-related cancer knows exactly where it came from. And there’s some small - admittedly, VERY small - comfort in that.

So, next time one of your patients brings in some article from a wacky natural-health magazine about the benefits of some cactus extract, or starts questioning whether the prescription you’ve prescribed safely for hundreds of patients could make them sicker, consider this: it may be because your patient is struggling to absorb the harsh truth that some sickness just happens.

Cancer is a scary thing. That’s why the field of cancer treatment is a congenial playground for all manner of charlatans and quacks – and why so many cancer patients are so easily bamboozled by them. Yes, it’s a very good thing for us to educate ourselves, becoming as well-informed as we possibly can. Yet, let us also remember, as we scan the Internet, that doctors who have studied long and hard to learn about our condition are our best, most trustworthy advisors.

Thanks, Mary Beth, for the link to this excellent blog. And thanks, Dr. Rob, for getting me thinking about this.

June 14, 2008 - Atlantic City Rules

I’m thinking, today, about something that happened to Claire and me last weekend. We were attending a fund-raiser for a local non-profit organization that aids the mentally ill. It was, rather unusually for us, a “Casino Night.”

We’d been given free tickets, as longtime supporters of the organization. So had Robin, our church’s associate pastor, who joined us for the first part of the evening. Turns out, none of our local ministerial colleagues had been willing to show their faces at an event featuring gambling. The organizers seemed glad the Presbyterians didn’t have such scruples.

We’re no supporters of gambling. We went because we wanted to publicly support the organization’s work. We felt completely out of place, but still found it fascinating to watch the crowds of well-dressed people milling around the poker, blackjack, roulette and craps tables. Unlike us, most of them seemed to know what they were doing.

You don’t win money at this kind of event. You buy gaming chips with real money (telling yourself it’s a donation to the mental-health organization), and if you have any left over at the end of the evening, you cash them in for numbered tags you then drop into boxes. Each box corresponds to a prize or a gift basket. If your number is drawn, you walk home with something nice.

The printed program declared, in bold letters, “ATLANTIC CITY RULES.” That’s as opposed to Las Vegas rules, I suppose (whatever those may be). The words have a double meaning: in that place, at that time, Atlantic City did indeed rule. Atlantic City ruled for all those well-dressed people slyly circling the gaming tables, sizing up the risks, trying to decide where on the green velvet to place their little stacks of chips.

It didn’t rule for us. We live just an hour’s drive from the East Coast’s gambling Mecca, but I can count on one hand the number of times I’ve visited there.

Anyway, the dinner was delicious and we had a generally pleasant time walking around and talking to people we know. Then, towards the end of the evening, it was time for the door prizes. Someone was standing up front with a microphone, calling out the numbers. Abruptly, a chair shot backwards – right in front of the emcee – and we saw a woman fall to the floor.

She had collapsed, for some unexplained reason. The whole room had seen it. The cheery door-prize announcers stopped their patter in mid-sentence and looked on, dumbfounded.

“Someone call the first aid!” shouted someone from the crowd. A dozen hands reached into pockets or purses, and emerged holding cell phones (thank God for cell phones).

“Is there a doctor here?” cried someone else. A tall, lanky older man in a business suit stepped forward and knelt down beside the stricken woman.

None of us could see what was happening. Our view was blocked by the tables and chairs, and by the several people kneeling down, assisting the doctor.

Awkward silence. Time seemed suspended.

“Is she alive?”

“I can’t tell. I can’t see a thing.”

More awkward silence.

“What’s taking them so long?”

Reflecting on this rather surreal experience later, I’m reminded of the oft-quoted remark of Susan Sontag, from her cancer memoir, Illness As Metaphor:

“Illness is the night-side of night, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”

This unfortunate turn of events had abruptly thrust us all into a sort of no-man’s-land: the seedy customs-and-immigration holding area, with dirty linoleum and buzzing fluorescent lights, that marks the border between Sontag’s two kingdoms.

Moments before, everything had been normal: cheerful people doing what passes for fun in our materialistic culture. As soon as that poor woman’s body hit the floor, everything changed. Big time.

Finally, a police officer strode in, pulling behind him an oxygen tank on wheels. A few long minutes later, a couple of first aiders wheeled in a gurney. They lifted the woman onto it, and cranked it up high. At last, we could see. The woman’s eyes were open. She was breathing. Relief.

The crowd looked on in silence as the solemn procession of medical acolytes departed the room. Moments later, the festivities resumed as though nothing had happened. The people with the microphone started up the door-prize drawing where they’d off. They said not a word about the events we’d all just lived through.

If it had been a worship service, we’d have known what to do. We’d have offered a public prayer, asking the Lord to bless our stricken neighbor with healing and to guide those seeking to help her. Yet, this was a thoroughly secular setting, in an increasingly unchurched culture. Atlantic City rules contain no codicil that speaks to such circumstances. You just utter a little sigh of sympathy, then go back to gambling.

The portal opening into the kingdom of the sick had been slammed shut. The memory, and the uneasiness, lingers on.

March 4, 2008 - The Uncertain Now

I’ve been reading Happiness In a Storm: Facing Illness and Embracing Life As a Healthy Survivor, by Wendy Schlessel Harpham, M.D. (Norton, 2005). Wendy discovered my blog a while back, and we’ve exchanged a few e-mails. She thoughtfully sent me a copy of her book.

I’m finding lots that’s useful in it. Wendy is a longtime NHL survivor who, her doctors told her at the time of her diagnosis in 1990, wasn’t supposed to live longer than a couple of years. She’s certainly defied those expectations. After her first recurrence, she decided to lay her medical practice aside and focus on her own healing, during which time she’s authored a number of self-help books for cancer survivors.

Here are some words Wendy wrote that express how I feel much of the time, as I deal with continued, low-level uncertainty:

“A great challenge for me was figuring out how to transform my heightened sense of uncertainty from a source of fear to one of joy. The problem was that after my cancer diagnosis, I knew – really knew, in a way that I think might be impossible without personally facing a life crisis – that all comfort and routine can dissolve in an instant. A worrisome headache, lump, or change in a mole could propel me on another medical roller-coaster ride. For the first few years of my survivorship, my heightened sense of vulnerability caused me great distress and made it hard for me to feel or be happy, even when my medical condition was on the upswing. How could I feel happy today knowing that my health might he worse tomorrow?

Some patients achieve Healthy Survivorship by denying life's uncertainty, and that works well for them. Not for me. So my challenge became figuring out how to turn the same hyperawareness that used to steal joy into a force that would enhance my joy. Consciously choosing to be grateful for life's uncertainty has changed my perception of all I have in positive ways. Clichéd but absolutely true, the only thing that is certain is today, this minute, this moment right now. This is it. Cancer gave me today, every day, in a way I’d never known before. Since I no longer take much of anything for granted, everything has an added element of happy surprise – I made it to see this, do that, stay here, and go there! The ordinary has become marvelous. Even unpleasant times are less painful, for they are proof that I am still here.” (pp. 339-340).

Living in the now – aye, there’s the rub! Easy to say, far from easy to do.

Wendy thinks gratitude is a big part of living in the now, and I think she’s right. Learning to be grateful for the little things, even when a big thing like long-term good health is far from certain, can be a bridge to shedding anxiety and living fully in the present.

“Today’s a gift,” says the bumper-sticker slogan – “that’s why they call it the present.”


May we learn to recognize those gifts all around us, open them with childlike wonder, and be thankful!

October 31, 2007 - Are We Scared Yet?

It’s Halloween, the night when costumed little ones take the long and lonely walk up to houses of people they barely know, ring the doorbell and hope for the best. I can still remember the butterflies in the stomach, back when I was numbered in that company: the heady combination of exhilaration and fear.

Today, my role is limited to carving the jack-o-lantern. I try not to make him look too scary. He’s a sort of open-for-business sign, an invitation to the little ghosts and witches and ballerinas and football players to step up and dig some “fun-sized” chocolate bars out of the black-plastic witches’ cauldron.

Claire and I miss the days when our own kids were young enough to go trick-or-treating. Fewer and fewer kids stop at our door each year, it seems – despite our glowing pumpkin beacon. It has more to do with the fact that there are houses on only one side of our street, than anything else. These kids get smarter every year. They know the streets where they can maximize their take are those that have houses on both sides, and close together.

Maybe it’s because it’s Halloween, but today’s New York Times – responding to the recent anxieties about antibiotic-resistant bacteria – has a little article, called "How Scared Should We Be?", on the relative risks of dying from various things. Some of these comparisons are rather bizarre: such as the one that says you’re more likely to die from being bonked on the head by a falling coconut (150 cases a year, around the world) than being killed by a shark (62 cases in the United States).

Here’s a portion of a chart indicating various causes of death:

Heart disease: 652,486 deaths annually (1 in 5 risk)
Cancer: 553,888 deaths annually (1 in 7 risk)
Stroke: 150,074 deaths annually (1 in 24 risk)
Hospital infections: 99,000 deaths annually (1 in 38 risk)
Flu: 59,664 deaths annually (1 in 63 risk)
Car accidents: 44,757 deaths annually (1 in 84 risk)

Down at the lower levels, risks include:

Lightning: 47 deaths annually (1 in 79,746 risk)
Train crash: 24 deaths annually (1 in 156,169 risk)
Fireworks: 11 deaths annually (1 in 340,733 risk)

Am I scared, now, of dying of cancer? Not as much as I used to be. Part of that is because my prognosis is actually better, now, than it was, pre-treatment. But that’s not the whole story. When you live with this kind of threat for a while (and it’s now been nearly 2 years since my diagnosis), you do get used to it. It becomes part of the background noise.

Yeah, chances are pretty good that cancer’s what I’m going to die from, in the end. But, when will that end be? Hard to say. Indolent lymphoma takes its lazy old time, and typically lets itself get beaten back down into is hole numerous times, by a succession of treatments, before rearing up and doing its worst.

Bottom line is, I don’t have time to feel scared. I have things to do, people to see. Odds are, my disease’s progression is more likely to be spaced out over years (or, in the best case, decades) rather than months. So, I can put the fear off a while longer.

Happy Halloween!