Tuesday, August 31, 2010

August 31, 2010 - Creativity and Cancer Survivorship

Today I run across this little gem, an edited-down version of a talk by Monty Python member John Cleese on the subject of creativity:

Cleese may sound like an odd choice, at first, to give this sort of talk, but in fact - alongside the brilliant loopiness of his television and film projects - he’s long had interests in being a serious academic. For a while he was Rector of the University of St. Andrews, where I did my Ph.D. (alas, just before my time there, so I never met him). He transformed the Rectorship - until then, a largely honorific, student-chosen position - into one that engaged with the University administration on a number of issues of importance to students.

The advice Cleese gives here is down-to-earth and practical: especially what he says about the importance of “sleeping on” a problem, and also of constructing boundaries of space and time for regular, serious reflection.

Running his remarks through my theological filters, I’m struck by how many times he dances right up to the line of saying something spiritual, but never quite steps over it. (No surprise there, because he doesn't believe in God.) For example, when he attributes creative breakthroughs to the work of “the unconscious,” he could have said “the Holy Spirit” - but doesn’t. When he’s talking about the need to carve out time for focused pondering, he could have said “quiet time for prayer and contemplation” - but doesn’t. Certain parts of the Christian spiritual tradition, such as monasticism, insist on a daily schedule (the liturgical hours) that’s meant to nurture precisely the sort of creative engagement Cleese is calling for, and have produced some wonderfully creative people (ranging from Thomas Merton to Dan Berrigan to Sister Wendy of the art-appreciation videos). We Protestants may be a bit behind the curve on that one, but even we have traditions of spiritual practices that foster creativity and holy insight.

So, what does all this have to do with cancer survivorship? Cleese doesn't mention any connection, but I was led to reflect on something many of us survivors have experienced: how the enforced down-time of a chemotherapy regimen crashed into our otherwise busy, over-committed lives and forced us to spend time reflecting on things we’d otherwise never have thought about (or perhaps not until some long-postponed retirement - and maybe not even then, judging from what I’ve heard from some retired people who report being busier now than when they were working).

It was during the enforced down-time of my chemotherapy, for example, that this blog was born. Since having that experience, I haven’t even needed to try to schedule time for creative reflection. I’ve simply done it (at times to the detriment of some of my more routine obligations, but what’s a credit-card late fee or two, if you’re staying more spiritually grounded as a result of obsessing less over the small stuff?).

Whatever stage of the survivorship journey we’re in - whether in treatment, in remission, in relapse, or in that blessed land some are bold to call “cancer-free” - it helps to let go of the urgent worries from time to time and put them to rest for a while, even if only for the few hours of a good night’s sleep (if that’s possible, health-wise). It also helps to set up those boundaries Cleese is talking about, so we can grab a little time for ourselves, away from the frenetic rounds travel to one medical establishment to another, and trying to respond to some of the demands of our normal lives when we’re not doing that.

Stephen Covey, in a memorable illustration I’ve referred to earlier in this blog, called it “sharpening the saw.” If you don’t stop your ceaseless sawing - back and forth, back and forth - from time to time, and pause to sharpen the saw-blade, you’re doomed to steadily decreasing effectiveness.

So, let’s hear it for self-care, on the cancer-survivorship journey! A major part of self-care is refreshing ourselves at those creative wells, where our spirit is free to engage with the Spirit of the Lord.

Friday, August 27, 2010

August 27, 2010: Cancer-Fighting's New Cocktail Party

An article in Business Week, "Cocktails Are Next For Cancer-Drug Makers," highlights what its author calls a new development in cancer treatment. Comparing newly-developed cancer drug combinations to the drug cocktails that have been successful in treating HIV/AIDS, the author says:

"For more than a decade, cancer researchers have been crafting drugs to disrupt the precise cellular processes that fuel cancer, creating a $51 billion market in 2009. So far, the survival benefits have been measured in months, not years. That's because cancer, like the virus that causes AIDS, evolves rapidly to evade a single treatment. Rather than mixing and matching approved drugs, researchers are developing new, targeted combinations that work in tandem to block cancer.

'We're looking to see a radical change in terms of stopping the disease in its tracks,' says Tal Zaks, head of global oncology drug development at Sanofi in Paris. 'The return on investment here is not going to be just evolutionary; it has the potential to be revolutionary.'"

I don't get it. What's so new about chemo cocktails? I got R-CHOP (Rituximab, Cyclophosphamide, Doxorubicin, Vincristine and Prednisone) five years ago. Isn't that a targeted drug cocktail?

R-CHOP is concocted of three chemo agents and a steroid, linked up with Rituximab, a monoclonal antibody that does the targeting.

How is this different from what the Business Week article is talking about? Can anyone enlighten me?

Monday, August 23, 2010

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?

Tuesday, August 17, 2010

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.

Tuesday, August 10, 2010

What To Say When a Friend Has Cancer

Here's an insightful article, shared by Betsy de Parry on the Patients Against Lymphoma group on Facebook. "Vital Tips to Keep Hope Alive Through Cancer" is a blog post by Lori Hope, a lung cancer survivor, on the CarePages website.

Lori's main focus is on what not to say to friends who have cancer. It really is helpful to think ahead of time about how to use our words in helpful, healing ways.

Sometimes the thoughts that first come to mind aren't all that therapeutic for friends with cancer. They may even make life more difficult. Such comments say more about ourselves, and our anxieties, than about the other's needs.

Here's a brief, digested form of Lori's pointers. For the full list, click on the link to the full article.)

• Don’t inadvertently blame the victims by hinting that they may not be thinking positively.

• Don’t blame the victims by asking about possible risky behaviors they may previously have engaged in, like smoking. This is an absolute no-no. (You may be wondering about it, but don't ask.)

• Don't share stories about people you've known who've had the same form of cancer, but didn't survive (Lori says she needs to hear at least five success stories to counter one such horror story).

To that one, I'd add a codicil: Don't share stories about people who had a completely different kind of cancer, thinking it will somehow be encouraging. The word "cancer" covers a vast family of diseases, making it very hard to generalize from one type to another.

So much for what not to say. Now, here are a few positive suggestions:

• For friends who may find it hard to be continually confronted by discouraging statistics, offer to help with research - but don't forward articles without first reading them through completely.

• Try not to be gloomy. Humor is therapeutic, so help your cancer-survivor friends find things to laugh about!

• Every once in a while, remind your friends you’ll be there for them, no matter what. Some survivors have the experience of losing longtime friends who simply drift away, because they can't handle the situation emotionally. It's always good to be reminded of friends who are still there for us.

Tuesday, August 03, 2010

August 3, 2010 - Clinging to the Tail of Possibility

On vacation in the Adirondacks, I read a remarkable article from the August 2 New Yorker magazine. I was tipped to the article by my brother, Jim – though I later learned from Claire that members of her hospice team have been passing it amongst themselves, causing lively discussion in their weekly staff meeting.

I think “Letting Go: What should medicine do when it can’t save your life,” by Atul Gawande, may set off at least as much debate as his June 1, 2009 article, “The Cost Conundrum: What a Texas town can teach us about health care.” (which I discussed in a July 20, 2009 blog entry, “Where Not to Get Sick.”)

Gawande is a general surgeon who practices at Boston’s Brigham and Women’s Hospital, and who teaches at Harvard Medical School. He’s operated on a lot of cancer patients. Some benefitted mightily from his expertise, and others’ last days would likely have been more tolerable without the invasive procedures. Yet, hindsight is always 20/02, and ahead of time it’s always a tough call.

It’s his physician’s perspective that leads Dr. Gawande to question the lack of agreed-upon procedures for end-of-life decision-making in America. For a country with some of the most advanced medical care in the world, our practices in this area are remarkably haphazard.

Gawande points out that the financial costs of successful cancer treatment can typically be graphed as a bell curve: there’s a steep climb from the time of diagnosis to a sort of plateau, as very expensive scans and treatments are deployed. Then, there’s a drop-off in costs as the patient recovers. In the case of patients whose treatment is unsuccessful, the frequent result is half a bell curve. We throw some very big money at solving problems that are – statistically speaking – unlikely to be solved, sending the line of the graph soaring upwards. Because it’s a human life at stake, doctors typically follow the lead of patients and their families, ordering such last-ditch treatments if that’s what they want. In many such cases, the patient dies anyway, often after many days, or even weeks, of intensive care. If the ICU stay is long, those days can end up costing as much as – sometimes even more than – the cancer treatment itself.

These are agonizingly difficult decisions, some of the toughest in medicine. When to pursue extraordinary, experimental treatment? When to throw in the towel and admit that maintaining a reasonable quality of life for the patient whose health is in a tailspin is more important than the increasingly quixotic search for a cure?

Gawande remarks that nearly all categories of dying patients and their families – with one exception – are ill-prepared to wrestle with such complex, emotionally fraught decisions. When, as too often happens, everyone’s energies are single-mindedly fixed on the search for a cure, doctors fail to raise the what-if question of death at all. It seems to them premature. Yet, when that likelihood suddenly looms large, and quick decisions have to be made about such interventions as feeding tubes and ventilators, patients and families scramble to wrap their minds around the new state of affairs. Unable to achieve unanimity, a great many families fall back to the default position, which is to press on relentlessly in search of a cure – even though the doctors may know, full well, that chances of extending such patients’ lives by more than a few weeks are slim.

Granted – as Claire reminds me, based on her hospice ministry experience – there are some cultural and ethnic traditions that inform this process. Orthodox Jews, for example, typically make decisions within a moral framework that nearly always opts for treatment, no matter what the chances of success. African-Americans and Hispanics, bearing cultural memories of parents and grandparents to whom the system too often denied advanced care, are more likely than others to press for it, even against medical advice.

Referring to science writer Stephen Jay Gould’s oft-quoted 1985 essay, “The Median Isn’t the Message” – in which Gould tells the story of how, upon learning he had mesothelioma, he decided to take his place among the tiny percentage of patients who survive, and did – Gawande speaks of the “tail” of the statistical curve. That’s the narrow portion that stretches a good distance into the future, and includes the fortunate few patients who manage to beat the odds and survive a deadly cancer. It’s good to remember, when faced with such stories, that the statistical median is just that – a median. Always, there are some who do better than clinical expectations, others worse. An awful lot of people, though, are trying to ride the tail of statistical probability – far more than will end up actually being on it. Gawande writes:

“I think of Gould and his essay every time I have a patient with a terminal illness. There is almost always a long tail of possibility, however thin. What’s wrong with looking for it? Nothing, it seems to me, unless it means we have failed to prepare for the outcome that’s vastly more probable. The problem is that we’ve built our medical system and our culture around the long tail. We’ve created a multimillion-dollar edifice for dispensing the medical equivalent of lottery tickets – and have only the rudiments of a system to prepare patients for the near-certainty that those tickets will not win. Hope is not a plan, but hope is our plan.”

I mentioned above that Gawande identifies one category of patients and their families who are better prepared for end-of-life decision-making. He’s talking about those who have received hospice services. Alone among the specialties of modern medicine, the hospice movement is not afraid to face death head-on and talk about it with patients – well before the anxious moment in the little family waiting room just off the ICU, when a doctor (or, just as likely, a critical-care nurse) sits down on the vinyl-covered furniture with the family and informs them a decision needs to be made about discontinuing life-support.

Patients who have signed on for hospice care have already decided they’re not going to cling to the slim tail of possibility any longer. They’re going to strive for the best quality of life they can construct in the here-and-now, placing their hope somewhere other than joining the tiny percentage who defy medical expectations.

I can’t begin to recall the number of grieving family members I’ve spoken with who told me they wished their loved one had gone on hospice earlier. Claire confirms for me, from her experience working with bereaved family members, that this is a nearly-universal comment. Curiously, the vast majority of hospice patients live no longer than a few days. That’s not because hospice care is somehow bad for them – quite the opposite. It’s because, by the time most patients make this decision, they’re already so far gone that hospice functions as little more than a transfer-station between the hospital and the funeral home.

It’s not meant to be that way. The hospice ideal is for weeks or even months of active, but mostly palliative, treatment. The hope is that the hospice experience will provide a gracious space for patients and their families to work through the full range of issues – medical, emotional, spiritual – they need to deal with at the end of life. Surprising as it may seem, there are even some patients who go on hospice for a time, then go off it – their improvement has been such that the “six months or less to live” criterion of hospice admission no longer applies to them.

So, signing up for hospice care is not giving up, as some fear. Far from it.

The key to a higher quality of life for the dying, Gawande points out, is communication. One of the things hospice team members do exceptionally well is to encourage patients and their families to share their thoughts and feelings about dying, then to listen attentively and respectfully to what they say. Next, they help them think through what goals they have for the rest of their lives, and do whatever they can to help them attain them. “You don’t ask, ‘What do you want when you are dying?’” explains one expert. “You ask, ‘If time becomes short, what is most important to you?’” Gawande observes:

“People die only once. They have no experience to draw upon. They need doctors and nurses who are willing to have the hard discussions and to say what they have seen, who will help people to prepare for what is to come – and to escape a warehoused oblivion that few really want.”

The asking of such questions was meant to be a central part of the new health-care legislation recently passed by Congress, but politics blocked it. The Tea Party mob ignorantly slapped the label “death panels”on the funding for these vital conversations, then pressured Congressional leaders to excise it from the bill – which they did, so as not to lose the bigger battle. This is a terrible miscarriage of justice for the dying: the sacrifice of a proven care approach that offered real promise for enhanced quality of life.

When the only goal worth talking about is to beat the disease, Gawande concludes – no matter what that may mean in terms of unproven, experimental treatments – the statistical outcome in nearly every case is going to be disastrous. Which general would you rather have leading the troops into battle? George Armstrong Custer or Robert E. Lee?

“Death is the enemy. But the enemy has superior forces. Eventually, it wins. And, in a war that you cannot win, you don’t want a general who fights to the point of total annihilation. You don’t want Custer. You want Robert E. Lee, someone who knew how to fight for territory when he could and how to surrender when you couldn’t, someone who understood that the damage is greatest if all you do is fight to the bitter end.”

This article is a good read, for anyone whose life has been touched by cancer – either their own or that of a loved one.