October 10, 2010 - A Doctor Who Gets It

Betsy de Parry, a lymphoma survivor and blogger whom I frequently cite in these pages, has published a truly remarkable letter from an oncologist and specialist in rare adrenal cancers, Dr. Gary Hammer. It’s an open letter he wrote to cancer survivors everywhere, in response to an open letter to doctors Betsy had written a few days before.

Dr. Hammer notes in his letter that virtually all his patients die under his care. That’s because the prognosis for adrenal cancers is generally poor. The best he can promise his patients is to buy them a little time, and to enlist them as allies as he and his colleagues chip away at the frustrating search for a cure.

It takes a very special doctor to persevere in medical practice under such circumstances. At the very least, a “thick skin” would seem to be an emotional necessity – surely, not easy to maintain alongside a pleasing bedside manner. (I have a feeling, though, after reading his letter, that Dr. Hammer is one of those rare individuals who can integrate both.) The type of medicine he practices also affords him a rather remarkable vantage-point from which to view the experience of patients living through their last days.

Both letters are worth reading in their entirety, but I’d like to share with you, here, a selection from Dr. Hammer’s. It shows he’s truly been listening to his patients, in the deepest sense:


“Perhaps the most frightening words a person might hear in his or her lifetime are ‘You have cancer.’ This truth revealed fractures our reality. It challenges our relationship to our inner world, forcing us to re-evaluate who we are.

However, embedded within this experience lived is a gift. The little-known secret is that the gift is not just for the afflicted but also for their entire circle of relationships, including spouse, children, friend and caregiver alike. The only requirements to receive this unique communion: vulnerability and presence.

As a physician engaged in the care of people with a particular rare cancer – where those under my care almost always die – I am thankful for the sharing of truths that have been unveiled to me by these men and women in this, their most vulnerable and internal sanctuary.

In this place of finding themselves dying, brave people have let me into their space where three truths seem to be unveiled again and again as defining gifts of sacredness. These truths can be embraced as three reflections of the word ‘presence:’ conscious engagement, the experience of present time (the razor-sharp now) and the gift of emotional authenticity.

Through these patients, I have come to an understanding that if we are fortunate to actually have time while we are ill, and we are brave enough, what happens as our vanity, our beauty and ultimately our physical identity is stripped away is that we are granted a chance to become our own sacredness — as it becomes all that is left.

Sadly, when people die suddenly, they rarely have the luxury of such time, such a place. But equally as tragic is that most folks never risk to venture to this vulnerable place while living when they do have time. Having our own death close by in life — be it through illness or conscious reflection — sharpens our internal lens by stripping away all that is not present, all that is not presence.”

Based on my experience, I’d say that having a deadly cancer is something like getting off the local train that is the normal pace of life and boarding another. The new conveyance is a bullet train that bears us on rapidly, roaring through many of the normal stages of adult development without stopping, to a windswept, elevated platform overlooking a barren plain – the place where we may contemplate our own death. It’s the terminus, the end of that particular line, a station most people will never glimpse until they are far advanced in years, if at all (those who die suddenly may never see it). We who have wrestled with the cancer angel are familiar with that stark vista, and also know how bewildering this headlong, high-speed journey can be.

Even more bewildering is the return trip. It happens in the flash of an eye. If we’re fortunate enough to see our disease go into remission – or to enter into the extended watch-and-wait “treatment” that’s really a non-treatment – we may suddenly find ourselves seated again on the lurching local milk-run. Around us are our fellow-passengers, snoozing away to the soft, rocking motion of the train. We look around the cabin and at first see only others who are sleeping.

But wait, over there, across the aisle: was that a movement? It was. Another person awake. She and I make fleeting eye contact. Yes. It’s someone else who was on the express, someone who knows.

And what’s that, several rows ahead? Someone else is stirring. A passenger yawns and stretches before he turns around, idly scanning the passenger compartment. He gives me a brief nod of recognition before laying his head back down on the shoulder of his sleeping wife, trying (perhaps in vain) to join her in slumber. Another fellow-traveler. When he closes his eyes, does the stark vision of that empty, elevated platform, surrounded by barren, moonlit prairie, rise up in his imagination?

It’s a wonderful thing to encounter a physician who’s taken the time to know his patients in such an existential way, to try to vicariously experience something of what we’ve been through.

Blessings to you, Dr. Hammer. May your tribe increase. And “thank you” to Betsy for initiating this fruitful exchange.

October 9, 2010 - Comic Relief from The Onion

OK, this one's a bit out of the ordinary for my blog, but I can't resist posting a link to this "news" story from The Onion, the internet satirical newspaper. It's called "Teen With Cancer Vows It Won't Keep Her From Being Mean, Moody Little S**t."

(Sorry for the profanity, both in the headline and in the article, but you'll see how it makes literary sense in this case.)

The article gave me a good chuckle, but it also points out how we who have cancer are who we are. The disease strikes randomly, without regard to personal virtue (or lack thereof).

It's also a sly send-up of all the adulatory talk that goes on about people with cancer. When you get the disease, you find that people are a little more inclined than usual to say complimentary things about you.

Was anyone ever lauded for approaching their so-called "battle" with cancer like a total weenie? I'm sure many have taken precisely that approach. But they never say anything about that when they're hanging the medal around your neck at the Relay For Life.

Don't get me wrong. Cancer can be transformative. I believe it has been in my case, and mostly for the better (although - true confessions time - four and a half years later, I could stand to ditch the procrastinating, devil-may-care approach to personal financial management that I fell into during my chemo-treatment days).

For all the times we survivors may joke about "playing the cancer card," the diagnosis doesn't give us a free pass for treating others with disrespect.

I suppose the experience of dealing with cancer does lead some of us to rethink, maybe even reform, our lives. Others, maybe less so.

Are we somehow obliged to approach our disease like the opportunity for transformation it just may turn out to be? I don't think so. It's an individual thing.

We all do well to try to avoid judging others in that regard. Those who want to take the weenie approach have every right to do so. And they probably still deserve a medal around their neck.

Deep down, I'm enough of a Calvinist to believe that we're all sinners, and that chemo and radiation have little effect on that particular malady.

That cure lies elsewhere.

August 23, 2010 – What the Biograph Knows

Last Tuesday, I went for a PET/CT scan. This is perfectly routine: I get scans at intervals, alternating between the PET/CT and a regular CT scan with contrast. It’s how Dr. Lerner and I figure out if we’re still watching and waiting, or if it’s time to take a more proactive stance.

A year or so ago, the testing interval was every 3 months. Now, the doctor has spread the schedule out to every 6 months. That’s because my lymphoma has been so lackadaisical of late – a good sign.

The scanner lives on the back of a tractor-trailer truck pulled up to a loading dock at Jersey Shore University Medical Center. It’s there a couple days a week. What hospitals it visits the other days of the week, I’m not sure.

Here’s what I recall of the experience...

I’ve been through this enough times to know exactly what to expect. Pin-prick on the finger-tip, for the instant blood test to make sure I’m not diabetic. IV needle inserted in the crook of the arm, into which the technician injects a hypodermic-full of liquid out of a thick, cylindrical, silvery-metal case (that’s lead casing, to protect the technician from the radioactive glucose solution I get to have coursing through my bloodstream for the next several hours – lucky me). The IV needle comes out right after that, then it’s 45 minutes’ R&R in a comfy lounge chair. During that time I’m instructed to sit quietly, even nap if I want. Only then am I ready for the scan.

That entails lying flat on my back, perfectly motionless, for 30-45 minutes, arms extended straight back over my head. I know from experience how the muscle-pain that develops in my arms, after 20 minutes or so of this unnatural posture, is the worst part.

Just before climbing onto the narrow table that will slide me through the machine’s donut-hole, I notice an inscription on the device: “SIEMENS Biograph 6.”

The manufacturer, of course, is Siemens, the medical-equipment giant. Biograph 6 is evidently the model name and number.

Ya gotta think of something while you’re lying on your back, trying to keep from counting the minutes, so I start musing on that word, “Biograph.” Obviously, it’s a trade name dreamed up by the Siemens marketing people. “Bio” means life, and “graph” means writing. Put the two together and the name suggests a chartful of medical data – which is, essentially, what this high-tech test produces. Makes good marketing sense.

It also calls to mind, of course, the word “biography.” Coincidentally, during the 45-minute rest period before my scan, I started reading a biography: The Most Famous Man in America: The Biography of Henry Ward Beecher, by Debby Applegate. Her book’s a fine example of the genre: a collection of facts about the famous preacher’s life, but also so much more than mere facts. The facts are presented so as to conjure up the real person, as though he could step right off the page.

That’s what a good biography does. Yet, I wonder as I lie there: What is it that a good Biograph does?

I suppose the thing that’s most important to the medical community is the way its visioning software slices and dices my body into thousands of paper-thin segments, which it then analyzes, looking for the rapidly-metabolizing tissue indicating a possible malignancy. (I don’t feel a thing while all this high-tech butchery is going on, by the way. Except for the pain from my hyper-extended upper arms, I could probably fall asleep there inside the donut-hole.)

Likewise, a biographer like Debby Applegate gathers and arranges a whole lot of facts about her subject’s life – scanning it, as it were – before sitting down at her word processor. Once she starts to write, though, her goal is not to simply pour out the unedited facts, performing the historical equivalent of a data-dump. No, the biographer’s aiming to put Henry Ward Beecher back together again, so he arises in the reader’s mind as a 3-dimensional personality.

I heard Debby give a talk about her book at the Presbyterian Historical Society Luncheon at our denomination’s General Assembly last month. She spoke of Beecher in a way that intimated he’d become very real to her. I recall her making an offhand remark about how she’d been “living with” Beecher for quite a number of years, as she researched and wrote the book.

The similarity of names makes an unlikely association in my mind to the Marx Brothers’ film, Go West, in which Chico and Harpo are walking up and down a railroad platform as Chico repeatedly calls out, “Mr. Beecher, we’re here to meet you!”

“Are you looking for John Beecher?” asks a serious-looking businessman in a suit. “I’m John Beecher.”

Chico’s eyes narrow suspiciously. “We don’t recognize you, do we, Rusty?” (Rusty is played by Harpo, who emphatically shakes his head “No.”)

“Naturally you don’t recognize me,” sniffs Beecher, officiously. “We’ve never met.”

“Then how do I know it’s you?”

Typical Marx Brothers lunacy.

Does the Siemens Biograph know it’s me? Having sliced me up into a thousand pieces (or, more precisely, into millions of little ones and zeroes), how will it put me back together again?

The technicians running the scanner couldn’t be more cordial or professional, but even so, the whole process is designed to produce a numerical output that falls far short of describing who I really am.

Following protocol, the technician checked my hospital bracelet as I came in. It was his way of answering Chico’s question from the movie: “Then how do I know it’s you?”

Yet, he doesn’t really know me. Nor will the radiologist who reads the results and reports them back to Dr. Lerner. To the inquisitive electronic eye of the Biograph, I’m just a biological system, nothing more.

There’s a famous scene in Shakespeare’s The Merchant of Venice, in which Shylock muses on the alienation he feels as a Jew, living in a Christian country:

“I am a Jew. Hath not a Jew eyes? hath not a Jew hands, organs, dimensions, senses, affections, passions? fed with the same food, hurt with the same weapons, subject to the same diseases, healed by the same means, warmed and cooled by the same winter and summer, as a Christian is? If you prick us, do we not bleed? if you tickle us, do we not laugh? if you poison us, do we not die? and if you wrong us, shall we not revenge?”
[The Merchant of Venice, Act 3, Scene 1]

One of the things we cancer patients appreciate the most is when someone treats us as a real person, not a mere medical case. I’ve been fortunate to get that sort of response from Dr. Lerner and from most of the people who’ve cared for me, over the past five years or so of tests and treatments.

We’d be foolish to expect that sort of thing from the Biograph – although, as we look to our fellow human beings who wear the lab coats and the nurses’ uniforms, is it out of line for us to hope for a little personal interest in our biography?

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.

December 1, 2009 - The Glad Game

Many people have heard the name “Pollyanna.” Her full name is Pollyanna Whittier, and she’s the title character in a classic series of children’s novels. The first one was published in 1913 by Eleanor H. Porter.

In the grim little New England town where the orphan Pollyanna goes to live with her aunt, she teaches others to play a little game her late father taught her. She calls it “The Glad Game.” It has one simple rule: find something to be happy about in every situation, no matter how dark or desperate.

The game’s origins go back to one particular Christmas. Digging deep in the charity barrel, hoping to find a doll for her present, Pollyanna finds only a pair of crutches. A poor kid without a toy at Christmas? What could be more pathetic than that? Pollyanna’s father teaches her, then, how The Glad Game works: be happy you found the crutches, he tells her, because “we don’t need ‘em!”



The Wikipedia article on Pollyanna gives a few examples of how adept the little waif becomes at playing The Glad Game:

“When Aunt Polly puts her in a stuffy attic room without carpets or pictures, she exults at the beautiful view from the high window; when she tries to ‘punish’ her niece for being late to dinner by sentencing her to a meal of bread and milk in the kitchen with the servant, Nancy, Pollyanna thanks her rapturously because she likes bread and milk, and she likes Nancy.”

Pollyanna becomes an evangelist for The Glad Game, bringing a treacly sweetness to her little town, until further misfortune in her own life forces her to practice what she preaches:

“Eventually, however, even Pollyanna’s robust optimism is put to the test when she is struck down by a motorcar while crossing a street and loses the use of her legs. At first she doesn’t realize the seriousness of her situation, but her spirits plummet when she accidentally overhears an eminent specialist say that she’ll never walk again. After that, she lies in bed, unable to find anything to be glad about. Then the townspeople begin calling at Aunt Polly’s house, eager to let Pollyanna know how much her encouragement has improved their lives; and Pollyanna decides she can still be glad that she has legs. The novel ends with Aunt Polly marrying her former lover Dr. Chilton and Pollyanna being sent to a hospital where she learns to walk again and is able to appreciate the use of her legs far more as a result of being temporarily disabled.”

We cancer survivors hear a lot about the importance of maintaining a positive attitude. In many ways, that advice is but a warmed-over version of Pollyanna’s Glad Game. The problem is, no real person can be as relentless in playing the game as the fictional Pollyanna. Feelings of sadness and dejection sometimes present themselves, and that’s OK. They come with the territory.

If we take the “think positive” advice too seriously, we can end up denying the existence of those negative thoughts – which are only natural, after all. Sure, maintaining a positive attitude is important, but that doesn’t mean we can never give ourselves permission to feel anger, or sadness, or frustration or any of the other negative emotions that come from this kind of protracted struggle.

There’s a lot of emphasis, in some cancer-treatment circles, on mental exercises like meditation and visualization as practical ways of calming the spirit. These practices are of proven usefulness and have their place, but it’s possible to take them too far. Some of the more enthusiastic promoters of these techniques claim they stimulate the immune system, actually unleashing the body’s healing energies – as though they were a treatment modality in themselves. It’s easy to see where such exaggerated claims can lead: to the belief that, unless we devote enough time each day to pulling ourselves up by our own endorphins, we’re giving up altogether.

Dr. Jimmie C. Holland, a psychologist at Memorial Sloan-Kettering Cancer Center, touches on this in her book, The Human Side of Cancer. She tells of a patient of hers named Jane, who had been successfully treated for breast cancer, but who felt troubled by the fact that she sometimes worried about a relapse. Could her worries in fact be a self-fulfilling prophecy, Jane wondered? This caused her to worry even more. The doctor comments:

“Jane was echoing a refrain I often hear from people with cancer: the notion that feeling sad, scared, upset, or angry is unacceptable and that emotions can somehow make your tumor grow. And the sense that if the person is not in control on the emotional plane all the time, the battle against the disease will be lost. Of course, patients like Jane didn’t come up with this notion on their own. It's everywhere in our culture: in popular books and tabloids on every newsstand, on talk shows, in TV movies.

For most patients, cancer is the most difficult and frightening experience they have ever encountered. All this hype claiming that if you don’t have a positive attitude and that if you get depressed you are making your tumor grow faster invalidates people’s natural and understandable reactions to a threat to their lives. That’s what I mean by the tyranny of positive thinking.”

Sometimes we just don’t feel like playing The Glad Game. Sometimes, we shouldn’t have to.

September 6, 2009 - Positively a Survivor

Today I come across a helpful website for cancer survivors from “across the pond.” It’s the MacMillan/CancerBackup website – evidently, a recent merger of two cancer-support sites.

There’s a lot of helpful stuff here about feelings and relationships, and how they impact the lives of cancer survivors. One item I found myself nodding along with addresses the whole subject of “being positive” – that common advice others often extend to us. Some of us may find ourselves thinking we ought to keep a positive attitude all the time, and that this is somehow essential to our wellness. Not so, says this website:

“When you talk to people with cancer, even the most positive of them will admit to low times when they felt depressed and anxious. No one can be positive 100% of the time. It’s important that you don’t feel that you must always stay on top of things. Being positive doesn’t mean having to feel happy and cheerful all the time. It’s a positive thing to acknowledge and talk about your feelings – even when you’re feeling tired, worried, depressed or angry.

There may be times when you want to talk about a difficult topic like the chance of the cancer being cured or making a will. Comments about being positive are then not always helpful - in fact, they can be very upsetting.”

Sometimes, you just can’t respond positively to cancer. There’s sadness associated with it, anger, even depression. It does no good to try to stuff powerful feelings like these, to deny that they’re present, out of a mistaken belief that keeping a sunny attitude is somehow therapeutic.

I think the most therapeutic thing, actually, is to try to keep closely in touch with our true feelings, to acknowledge them, to deal with them appropriately. This doesn’t mean bleeding all over our friends and family, emotionally speaking. But it does mean freeing ourselves from any prejudgment that there’s a particular way we ought to be feeling.

Most of us, I suspect, would do much better if we’d seek to banish that little word “ought” from our thinking, when it comes to feelings.

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.

August 22, 2009 - Laughter Yoga

This little video is endearing – and not just because it features the always-amusing John Cleese as narrator. I’ve heard of India’s “laughter yoga,” but have never actually seen it before, in action.

I figure this stuff has got to be therapeutic – but, if nothing else, it looks like great fun:



I’m especially intrigued by the observation that it doesn’t seem to matter whether the laughter is forced or natural: the therapeutic benefit is the same.

Of course, as the doctor points out in the video, even if participants are forcing their laughter at first, after a few moments of looking at all those goofy faces, only a rock could keep from laughing in response.

Maybe laughter really is the best medicine.

August 19, 2009 - Resilience

A New York Times article speaks of a new sort of training the U.S. Army is implementing for more than a million of its soldiers: training meant to encourage emotional resilience.

The goal is to reduce the incidences of post-traumatic stress disorder in soldiers returning home from combat. The Army’s going ahead with the training program, even though some have expressed doubt that the service’s macho, just-suck-it-up culture is compatible with such a touchy-feely approach.

Behind the training is Dr. Martin Seligman of the University of Pennsylvania, a proponent of “positive psychology” – an approach that focuses more on wellness and prevention than on treating pathology.

“Psychology,” he explains, “has given us this whole language of pathology, so that a soldier in tears after seeing someone killed thinks, ‘Something's wrong with me; I have post-traumatic stress.’ The idea here is to give people a new vocabulary, to speak in terms of resilience. Most people who experience trauma don’t end up with P.T.S.D.; many experience post-traumatic growth.”

I find that remark of Dr. Seligman’s interesting with respect to cancer survivorship. For many people, the effect of cancer treatment seems similar to that of a soldier in combat. The key is to slow the logical progression from thinking of one’s life as normal to seeing it as utterly devastated. In reality, there’s a whole spectrum of possibilities between those two extremes. Cancer need not be a life-shattering experience, no more than a tour of duty in a war zone needs to be. Both experiences are difficult, even life-changing. Yet, both are survivable, psychologically speaking.

Many of us cancer patients, at the time of diagnosis, operate from a stereotypical, worst-case understanding of the disease. Our minds leap to the assumption that it’s a death sentence. We imagine the next words out of the doctor’s mouth, after “You have cancer,” will be “I advise you to get your affairs in order.” It’s not that way, of course, and is becoming less and less so as time goes by, as new treatment protocols emerge from the laboratories.

Cancer survivorship is no picnic. But, it’s not death row either.

Elizabeth Edwards’ latest book is titled, Resilience: Reflections on the Burdens and Gifts of Facing Life's Adversities. I haven’t read it yet, although I did read her autobiography, Saving Graces: Finding Solace and Strength from Friends and Strangers. I find it interesting that Elizabeth has latched onto this word “resilience,” in light of all the trials she’s been through: losing a son, getting cancer, responding to her husband’s marital infidelity in the glare of national publicity.

I found an excerpt from the book online, in which Elizabeth tells of meeting a fellow cancer survivor named Mark Gorman. He carries around with him a slip of paper from a fortune cookie that says, “You cannot change the wind, but you can adjust the sails.”

So true.

Resilience. It’s a good word.

June 12, 2009 - Beside the Lake

It’s nearing the end of a remarkable day, for me. After breakfast and a time of worship, our retreat leaders sent us off to find a place to spend two and a half hours in quiet discernment, seeking hints to the leading of the Holy Spirit in our lives. Four days’ work have led up to this point. I have been much occupied in reflecting on various things that have led me to feel spiritually and vocationally stuck. Many of them derive, directly or indirectly, from the way lymphoma has interrupted my life.

Reflecting back, now, on that time of discernment...

I make my way along the path to a large, lakeside picnic pavilion on the conference center grounds. The place, which is evidently where they hold cookouts as well as some wedding receptions, is deserted. Walking across the wooden deck to the railing by the water’s edge, I notice something at my feet. It’s a bird’s nest, with a yellow-and white smear on the planks beside it. Evidently, some prowling carnivore swept the nest down from a rafter overhead, then devoured the frail eggs that had been nestled in it.

Saddened by nature’s carnage, I pull a folding chair to the edge of the dance floor and sit there, looking across the lake.

Skirted by rolling mist, the dark water reflects the tall trees on the opposite shore. Occasionally, a fish breaks the opaque surface. The calling of circling birds reminds me this place is teeming with life.

Taking out my journal, I begin to write a poem that records the way this scene speaks to me, in a way I can only conclude is the leading of the Spirit:

CONSIDER THE BIRDS

“Look at the birds of the air...” – Matthew 6:26

Bird’s nest
cast on the wooden planks of a picnic pavilion:
empty,
bereft.
Beside it,
a spattered mess of yolk and white:
life’s potential
spilled out
by some anonymous predator.
Life is hard,
far harder than we know
through pampered days;
cruel, too,
and unspeakably random.
So many fruits of careful, loving preparation
cast aside
with one sweep of the predator’s paw,
one feathered flurry of raptor-wings.
And what of the wattle-and-daub sanctuary
of my life, my career (if I may use that un-theological word)?
There is sadness:
immense sadness,
mourning,
for all the cancer has swept away.
Sometimes I fear my vaunted call to ministry
has become but a smear of yolk and white
upon the deck.

Whose call is it, anyway,
I hasten to remind myself?

Out on the lake,
a man is rowing backwards,
facing towards the prow.
He wants to see where he is going.
Does he not trust the dread discipline
of rowing towards a destination he cannot see,
eyes fixed on the reference point?

Get up.
Get up and walk a spiral labyrinth
upon the dance floor:
a squared-off spiral,
defined by angular symmetry of faux-wood tiles.
Constriction
on the way in,
tightness.
Options, one by one,
falling away.
At the center,
a swift turn upon the heel:
scarcely room to breathe.
But then,
but then, the turning.
“To turn, turn will be our delight,
till by turning, turning we come out right.”

What of the ravaged nest?
What of it?
Shall my eye continually be drawn
to such a horror?
What of the bird-mother,
whose eye must have,
one time at least,
been drawn to that appalling sight?
There is birdsong in this place,
to be sure,
but no black-winged mourner,
perched disconsolately upon a rafter.

Then
comes the Sweeper,
broom in hand.
His eye falls upon the downed nest
before he stoops down,
pausing scarcely a moment,
and picks it up in two fingers
before walking solemnly to the rail
and tossing it gently into the lake:
burial at sea.
A squeeze-bottle of pink disinfectant
completes the ritual,
soaking the boards:
chemical absolution.
A few passes of this Undertaker’s broom,
and all that remains
is a wet spot upon the planking.
Nature,
like the mother bird,
has a way of moving on,
it would seem.
(Later,
Archangel Janitor paces slowly away,
squeeze-bottle in one hand,
rag in the other.)

Tears wet my eyes
as I recall how many days I have wasted:
days the Lord has made,
intended for rejoicing.
How many pounds of walking burden
have I allowed to gather at my waist?
How many meaningless rectangles of paper –
8½ by 11, and other shapes and sizes –
have I allowed to join the dusty disarray
on my abandoned desktop?
Have I become a bystander to my own, neglected life,
in ways the mother bird
never allowed herself to be?

I sit, davening, upon my folding chair.

“What are you doing here, Elijah?”
“I have been very zealous for the Lord, the God of hosts.”
I have fought the helmeted cancer-hordes to a draw.
(So far, they have not returned,
but for the occasional, ominous scout.)
“I, I alone am left” has been my cry.

The Lord, of course,
would not,
does not
let a true prophet get away
with such an easy answer.

My way back
is serenaded
with birdsong.

March 2, 2009 - Power of Blog

One of the tough realities of following cancer blogs is that, from time to time, someone you’ve come to know and respect in this strangely intimate medium dies. This is what’s happened in the “Clusterfook” blog written by Lisa, a young wife and mother who’s been dealing with ovarian cancer for several years now.

One of the last topics Lisa blogged about was what she called “power of blog” – a concept similar to power of attorney, but having to do, instead, with who would take over her blog. As she entered hospice care, she had to find someone to whom she could entrust her username and password, so as to inform the blogosphere of her death.

Her husband is not evidently much of a computer person, so she turned to a fellow blogger. On Saturday, February 28, Lisa’s friend, Karl, posted news of her death.

Just over a month ago, Lisa mused about the reactions of some readers, who said they found her blog “too depressing.” I never had that reaction, myself, as I read her words. I found Lisa consistently blunt and down-to-earth as she described her decline in health, but she seasoned those grim facts with a quirky sense of humor and a passion for living her days to the fullest.

Here are a couple of excerpts from that post of January 26:

“As heart breaking as death is, I’m doing O.K. with everything that’s happening. Do you hear any ‘woe is me?’ in my writing? Do I sound like I feel sorry for myself? Am I crying out for pity?

No, no and no.

Every day I strive for inner peace and so far I’ve found it. I consider myself one lucky chick-o-dee, perhaps I should say I’m a blessed chick-o-dee to have such calm and inner peace.

That’s not to say that I don’t cry. Crying is a release of emotion for me but I’m not crying every day. Usually I cry when having deep, heartfelt discussions with family members and friends. Those moments when we are brutally honest about how we feel about each other and say to each other the things we should be saying but usually never have the courage to say. Then the day comes when it’s too late to say what we’ve always wanted to say.

If you ask me, it’s a gift to have those opportunities right now. My advice to you is don’t wait until you are facing death to tell those dear to you how you really feel about them. Whatever is holding you back…let it go.”

In a post just prior to that one, Lisa related what it had been like to tell her 8- and 11-year-old girls (whom she calls by the pseudonyms “Cam” and “Teeny”) that she was dying:

“Telling Cam and Teeny the truth, that I’m not going to get better, was one of the most heart breaking things I’ve ever had to do. It is NOT easy to tell your children that you are dying. Listening to them cry was one of the worst things I’ve ever heard. Not being able to fix it is the worst feeling in the world....

Dude [that’s her blogging nickname for her husband] and I decided to deliver the news to the girls last Saturday afternoon, a few hours before they had to go to church. Teeny has been consistently lighting a candle for me every week and she finds a lot of comfort in going to mass with Dude. Cam doesn’t complain about going nor does she get real excited. Dude and I thought they might find some extra comfort in going to church after talking to us earlier in the afternoon.

I’ve been too sick to go to mass for a while so Dude takes the girls by himself. He said that each girl was snuggled up as close and as tight to his side as they could be during mass. And of course, Teeny lit a candle as she always does. When she got home she told me that she still believes in the hope that I’m going to get better. God, how I wish that little ray of sunshine was right....

My kids are strong but they have been dealing with cancer in their lives for five years. I hope the lessons they’ve learned and continue to learn make them stronger and don’t scar them. Although how do you tell an 8 and 11 year old there’s a lesson to be learned when their mom dies?

Well, I’ve got them surrounded by great people and a good support system that I hope pulls through for them. That’s how you do it.”

Lisa’s blog has a subtitle: “It Is What It Is.” I can remember repeating that phrase on numerous occasions, myself, during the acute phase of my illness. I can remember taking an odd sort of comfort in it. There’s something strangely liberating about shedding all the myriad worries and distractions of everyday life in order to focus on one, true thing: living as well as you can.

One of the reasons “It is what it is” is comforting is that it reflects a fundamental truth: a cancer diagnosis is a lot scarier through the windshield than it is in the rear-view mirror. Eventually you adapt, your family adapts, your friends adapt, as together you learn to face the future, whatever it may hold. A few people around us are never able to do that, and withdraw – but most manage to make the transition eventually.

Yes, it is what it is. And, sometimes, it can even be beautiful – like Lisa’s indomitable spirit. Truly, that’s the “power of blog.” Prayers and good wishes go out to all who love Lisa and miss her.

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.

January 4, 2009 - The Last Chapter

The other day I was catching up on my reading, scrolling through the entries on some cancer blogs. On the blog of Mike Dellosso, a published novelist, I came across a short story he wrote, called “The Last Chapter.” (After clicking on the above link, scroll down to the very bottom of Mike's page for the link to his story.) He wrote it, he says, right after his own cancer diagnosis, as a sort of coping exercise.

I find it interesting to read, from the perspective of a cancer survivor. The story’s about a newly-diagnosed man, a construction worker, who learns from his doctor that his cancer is advanced and untreatable. He resolves to end his own life, then some experiences he has lead him to question that decision.

Here’s something Mike writes in another blog entry, dated December 30:

“I learned this: God is good all the time. ‘But how is getting cancer good?’ I have no idea. But I know this. God’s standard of goodness is not the same as ours. His understanding of goodness is on a different plane than ours. He sees things our eyes could never see. Knows things our minds could never even dream of fathoming. His idea of suffering is not the same as ours. He is God and I am not. And in that I have to place my trust.

I also learned this: God will never . . . ever . . . abandon me.”

Like the protagonist in Mike’s story, the news of a cancer diagnosis can shake our lives to their foundations. Most of us – like Mike, and like the man in his story – enter into this crisis and come out the other side, eventually, feeling stronger for the experience.

It’s one of the wonders of this experience called cancer.

“We know that all things work together for good for those who love God, who are called according to his purpose.” – Romans 8:28

November 23, 2008 - Brenden's Last Wish

This morning I have the TV news on while getting dressed, and I catch a CNN news item about the recent death of Brenden Foster, an 11-year-old boy with leukemia. It’s a sad story, to be sure, but there’s something very unusual – and powerful – about the way this young boy faces the reality of his own death. Brenden seems preternaturally calm, and incredibly accepting of the fact that his life is going to be far shorter than that of any of his peers.

Searching on YouTube later, I find this clip of an interview with him that aired a week before he died – a portion of which was included in the CNN story I saw:



Brenden exhibits what could be called the “It is what it is” approach to dealing with cancer. There’s a sort of wistfulness about him – not sadness, necessarily, but a detached, philosophical acceptance of what’s about to take place. Maybe there was a time when Brenden raged against the news of his own death, or denied it – but, if he ever was in such a place, he seems to have transcended it. He’s progressed far beyond those stages of the dying process.

I find Brendan’s demeanor calming, and beautiful. Would that we could all accept our own mortality with such equanimity.

November 17, 2008 - Do You Really Know How I'm Feeling?

This evening I attend the monthly blood cancers support group at The Wellness Community, sponsored by the Leukemia and Lymphoma Society. It’s our usual gathering of leukemia, lymphoma and myeloma survivors, plus a couple of new faces.

One statement that elicits a strong response from the group is the line, “I know just what you’re feeling.” One of the group members is sharing how he hates to hear that line from friends and family members who don’t themselves have cancer. Several other group members chime in: they don’t especially like hearing that statement, either.

Just talking about it brings one of the group members to tears. Whenever she hears that line, she takes it as a sign that the other person is minimizing her feelings.

“She’s right,” I think to myself. “That surely is an insensitive thing to say to someone with cancer.” But then, I remind myself that I do pastoral counseling as part of my work. Lots of people out there haven’t had the benefit of clinical counseling training. They just don’t get it. One of the first things our professors taught us in our seminary counseling courses was how phony and superficial that sort of statement sounds to the recipient.

Do we ever truly understand what another person is feeling? Even at our most empathetic, we only get partway there. In order to have a truly honest and open exchange, we need to allow room for listening to what the other is saying – especially about feelings that go beyond our own, limited experience.

No, we never fully know what another person is feeling. But we can listen. And that’s a great start.

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 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.