July 30, 2008 - Woodpecker

This last week of my vacation, I'm relaxing up at our little house in the Adirondacks. The place has no lawn and is surrounded by woods, so just by looking out the windows we're sometimes treated to some up-close-and-personal wildlife. I've already seen deer outside the house several times, this trip.

This afternoon I was attracted by some movement outside our living-room window. I was rewarded by the sight of two very large woodpeckers, who had just zoomed in and attached themselves to a couple of trees.

These birds were LARGE - bigger than I ever imagined a woodpecker would be (although I have to say, I've never seen one this close). One flew off pretty quickly, but the other hung around for a while, moving from tree trunk to tree trunk, looking for bugs no doubt.

I tried to get a picture, but by the time I got the camera into position, it had gone. I called Claire right away (she's the birdwatcher in our family). Based on my description - it looks like Woody Woodpecker, I told her - she said it was probably a Pileated Woodpecker. I checked it out on Wikipedia, here at the public library (where I now am), and found out she nailed the identification (kudos, Claire). Wikipedia says this bird was the model for ol' Woody.

Pretty cool, to see a couple birds like that right outside the window.

The Creator has all kinds of free gifts to offer us, if only we have eyes to see.

July 29, 2008 – Some Cancer Poetry

Here’s another way some survivors respond to cancer: by writing poetry. I ran across this poem on a New York Times health-related blog.

It’s by a woman named Kyle Potvin, who’s just gotten over chemotherapy for breast cancer.

The backstory is, Kyle had just come back from a business trip to Texas, where she’d bought her sons terrariums to grow cactus plants. Working with them to plant the cacti, she was inspired to write a poem, “The New Normal”:

To grow a Texas cactus from the start,
You scatter tiny seeds on dirt and sand
(Your nail works well to nudge stuck ones apart).
Then sprinkle water with a steady hand.
Each day, my son asks, “Will it get real tall?”
He crowds his brother as they check for growth –
The way I’ve searched my hairless head since fall.
I pray young shoots will sprout up soon for both.
It happens all at once – soft spikes appear;
I rub my scalp while calling to the boys.
They peer in close to analyze each spear.
My bigger joy is lost to hooting noise.
The victory is all my own: Mom’s hair?
The news is that we grew a Prickly Pear.

July 25, 2008 - Insurance Company Rules

While I'm on a roll with embedding YouTube videos, this little TV commercial makes a satirical point about the way some medical insurance companies like to operate:

July 25, 2008 - Farewell to Randy Pausch

Sad news, but news we expected eventually. Professor Randy Pausch of Carnegie-Mellon University has died of pancreatic cancer:



See my October 24, 2007 blog entry for more on this remarkable man, and his "Last Lecture" delivered at Carnegie-Mellon. It's become one of the most popular downloads on YouTube. Oprah also had him on her show, to give a Reader's Digest condensed version of the lecture.

Here's a link to a news article about his death.

Many of us are grateful to Randy for modeling what successful survivorship is all about.

Carl

July 23, 2008 - Early Mid-Life Crisis?

The more I move through this journey of cancer survivorship, the more I’m coming to realize it’s a continuing process. Being a survivor is different one month after treatment ends than it is a year, or two years or more, afterwards. We continue to grow into this reality called survivorship.

I don’t imagine this is something a person who hasn’t been through it can easily understand. With most other medical situations – say, for example, an infection that’s successfully treated, or the hernia-repair surgery I had a few months ago – when it’s over, it’s over. Cancer is never over, not even if remission continues into the long term. There’s always the possibility it could return.

Here’s another quote from Glenna Halvorson-Boyd, from Dancing in Limbo: Making Sense of Life after Cancer (which I’ve now finished reading). Here, she shares a long-term survivor’s perspective – reflecting also the perspective of others, that she’s learned about through a number of interviews:

“At some point, those of us who have survived cancer stop wondering why it happened. We get over the posttreatment letdown. We tolerate our fears of recurrence in the full knowledge that there is no sure cure. Our relationships are renewed on current terms. Life goes on.

While our preoccupation with cancer fades, our awareness of mortality remains. That heightened awareness guides our lives, whether we recognize it or not. It creates anxiety, but it also reminds us that we are alive. Our time on earth is short and precious. This is the stuff of great art and trite greeting cards. Only a writer of Franz Kafka’s perverse gifts can get away with stating the obvious, ‘The meaning of life is that it stops.’ When we use a brush with death to refocus our lives in more authentic and meaningful ways, we are making the best of the situation, to be sure, but we are not romanticizing our misfortune. Cancer is not glamorous. Surviving cancer is neither romantic nor heroic. It is our good fortune, and it is forever a part of our lives. We may feel stronger for having endured the trials, or we may feel more vulnerable. Probably we feel both, on alternate days or even at the same time. Sometimes we know that ‘sadder but wiser’ is a cliché because it is true....

For some of us, having had cancer means that we don’t have time to waste; for others of us, it means that wasting time is our greatest luxury. For some, it means pushing to achieve our ambitions; for others, it means releasing ourselves from worldly ambition. As life goes on, we each sort out what it means to be a survivor.”

– Glenna Halvorson-Boyd and Lisa K. Hunter in Dancing in Limbo: Making Sense of Life After Cancer (Jossey-Bass, 1995)

At the time she was writing, Glenna was reflecting back on more than ten years’ experience as a mouth cancer survivor. She had surgery that removed a part of her tongue as well as other tissue inside her mouth, and she had to learn how to speak again. Unlike me, cancer has left Glenna with a continuing disability, but the change she’s talking about is deeper than the merely physical. It’s a matter of soul.

I’m especially struck by what she says in the last paragraph, above, with respect to ambition. Some survivors want to aggressively pursue some long-deferred dream. Others want to shed worldly cares and learn to live as slowly and deliberately as Thoreau did beside Walden Pond. I think I’m somewhere in between. Some days, I want to go seek a call to some tall-steeple church and write a bestselling book. Other days, I just want to settle in where I am, be as good a husband and father as I can be, and simply try to live as authentically as I can. At this stage in my survivorship, I’m experiencing major ambivalence.

Here at our little cabin in the woods, ever since Claire ran out of vacation days and had to return home, I’ve been feeling that tug in two different directions. I’ve got some major writing projects in the works – most urgently, an overdue third installment of a preachers’ commentary on Cycle A of the Revised Common Lectionary. CSS Publications is going to combine this manuscript with books I’ve already written on Cycle B and Cycle C, and bring them out as a single volume. This morning, I finished my draft of Cycle A, and – once I drive into Plattsburgh, to my favorite wireless hot spot in the Borders bookstore café – I’ll e-mail it off to my editor. I’ve still got a good bit of work yet to do, on some additions the publisher has requested for the previous two volumes. It will be a good feeling to finally finish that multi-year project, which I began before my cancer diagnosis. I just may be able to finish it before my vacation ends in a couple of weeks.

I have to admit, though, I don’t have quite the fire in my belly for this project as I did when I began it. It’s all part of that ambivalence I’m feeling. Do I want to be one of those survivors Glenna talks about, who’s eager to “achieve worldly ambitions”; or, would I rather “release myself from worldly ambitions?” I’m still trying to figure that one out.

Maybe I’m having an experience similar to that of a testicular cancer survivor named Neil, whose story Glenna tells:

“Another cancer survivor described his cancer experience as an ‘early midlife crisis.’ Neil was thirty-two when he was diagnosed with testicular cancer twenty years ago. Although the prospects for a cure are quite good today, back then he faced almost certain death. Neil fought for his chemotherapy and became one of the early successes in the treatment of testicular cancer. When faced with death, he took charge of his life. As he puts it, ‘At thirty-two, I woke up to the fact that I’m going to die, and... I don’t want to waste my time. So you recognize that your time is limited and precious, and that you... have some control over it.’” (p. 147)

Some people go out and buy a red sportscar to celebrate their mid-life crisis. I got lymphoma.

I should have bought the sportscar instead.

July 21, 2008 - Triple-Barreled Shotgun

A news release from the Leukemia and Lymphoma Society directed me to an article in The Oncologist, which includes this conclusion:

“Treatment options for patients with follicular lymphoma have significantly expanded. They include ‘wait and watch,’ radiotherapy alone for stage 1 or 2, rituximab alone, RIT alone, single- or multiple-agent chemotherapy combined with rituximab, and participation in many ongoing studies with a variety of different treatment combinations and intensity levels. Therapy might thus ultimately be adapted to the patient’s individual situation, depending on the aggressiveness of the particular patient’s disease while still relying on a continuously growing repertoire of salvage therapies.

Multiple studies in NHL indicate that chemotherapy combined with rituximab or RIT yields superior results compared with chemotherapy alone. We argue that chemotherapy combined with both RIT and full-dose biological treatment has an even higher efficacy potential. The tripletherapy approach employing upfront chemotherapy combined with optimized RIT and extended biologic treatment with antibodies may represent the best chance for prolonged disease-free survival, and potential cure, keeping in reserve the possibility of intensification with ASCT or allografting for relapsed patients.”

(Franz Buchegger, Oliver W. Press, Angelika Bischof Delaloye and Nicolas Ketterer, “Radiolabeled and Native Antibodies and the Prospect of Cure of Follicular Lymphoma,” The Oncologist, 2008;13:657–667.)

I plowed through the whole article, dense medical jargon and all, because it could very well describe the course of my next treatment.

Of the various treatment options described in the second sentence, I’ve already had “multiple-agent chemotherapy combined with rituximab” (the R-CHOP chemo cocktail I received in January-May, 2006). Ever since my relapse last spring or summer, my current “treatment” (if it can be called that) has been “wait and watch.”

I’ve known for some time about three other treatment options: autologous stem-cell transplant (ASCT), “extended” or maintenance treatment with rituximab, and radioimmunotherapy (RIT). RIT refers to one of two drugs, Bexxar and Zevalin, each of which attaches a radioactive tag to rituximab molecules, allowing tiny particles of radioactive material to piggyback on rituximab’s unerring ability to find and travel to lymphoma cells.

RIT is the treatment that came close to disappearing at the end of last year, when revised Medicare reimbursement guidelines threatened to price it out of existence (see my November 14 and November 30, 2007 blog entries). After a deluge of letters from cancer patients and their friends, Congress swooped in at the last minute and granted a temporary extension of the old reimbursement guidelines. Recently, the same thing nearly happened again. The President vetoed the latest Medicare bill that included sufficient funding to keep RIT alive, but Congress overrode his veto.

What’s new about this article is that it’s recommending that a triple combination of therapies – chemo, maintenance rituximab treatment and RIT – be undertaken before a relapsed NHL patient goes for a stem-cell transplant. Because of the dangers associated with stem-cell transplants, this new thinking pushes that option a little lower down the priority list.

My former treatment was like a double-barreled shotgun: go after the cancer with both barrels at once. Reserved for the future were two other promising possibilities: RIT (with or without a follow-up program of maintenance rituximab) and stem-cell transplant. There was also, of course, the possibility of simply reloading the shotgun and firing the same two barrels again (rituximab combined with a different chemo cocktail – since CHOP cannot be repeated). Now, the authors of this article are recommending that a third barrel be added to the shotgun, blasting the cancer with all three at once: chemo, RIT and maintenance rituximab.

I wonder if this will become the new standard for treating relapsed follicular lymphoma? Or, if it will simply be one strategy out there, that continues to be debated?

I wonder, also, what the insurance companies will think of the new triple-barreled combination? It will surely be more expensive (although probably still not as pricey as a stem-cell transplant).

Last week I received a phone call from Dr. Lerner, letting me know that my July 1st CT scan indicated only slight growth in my abdominal mass. How slight? Two millimeters is what the doctor said – explaining that the growth is so small, some would consider it to be within the margin of error. Dr. Lerner confirmed that, when I meet with him in early August, continued watch-and-wait will be his recommendation.

I think I’ll ask him what he thinks of the triple-barreled approach – just as a matter of interest. In any event, the slow pace at which my disease is progressing suggests it may be some considerable time before we’ll have to make any treatment decisions.

This is, of course, a good thing. By then, the “continuously growing repertoire of salvage therapies” may well have grown a little more, and that the ongoing debate about treatment options will have advanced that much further.

July 20, 2008 - Featured on Presbyterian Bloggers

Last Friday, this was the featured blog on the "Presbyterian Bloggers" blog. Check it out.

Click HERE, then scroll down to Friday, July 18:

http://pcusablog.blogspot.com/

July 16, 2008 - Certainty Lost, Wisdom Gained?

There are many losses associated with cancer, but among the most slippery to deal with is the loss of certainty. Such is the observation of Glenna Halvorson-Boyd and Lisa K. Hunter in Dancing in Limbo: Making Sense of Life After Cancer (Jossey-Bass, 1995). It’s a book I half-finished reading some months ago (see my April 18 blog entry), and have only recently picked up again. Here’s what these two cancer survivors say:

“We assumed that we had a future; now we don’t know. We assumed that we were safe in our own bodies; now we can’t be sure. We assumed that we had more control over our own lives. If we did the right things, we would be all right. In general, we believed in a more certain world.” (p. 88).

Most of us, in our younger years and well into middle age, live our lives based on certain assumptions. They’re irrational assumptions, but still we hold them dear. We know, intellectually, we’re going to die one day, but we really don’t believe it in our heart of hearts. By the same token, we may know that a certain percentage of the population will fall ill with life-threatening diseases, but we really don’t believe we’ll be numbered among them. We believe that if we do the right thing – or try to do the right thing – a beneficent Providence will reward us with life, liberty and a happiness we scarcely have to pursue.

We work hard, at times, to keep this irrational belief-structure in place. When we see neighbors get sick, many of us believe – consciously or unconsciously – that somehow it must be their fault. Maybe they smoked, or drank to excess, or gorged on some carcinogenic food we ourselves are wise enough to avoid. To believe otherwise – to acknowledge that many cancers and other life-threatening illnesses just happen, and scientists can’t say why – is too uncomfortable a thought to hold. And so, we search out a reason, a cause for the catastrophe. We leap on every rumor that the latest artificial sweetener or food additive is carcinogenic. We line up to protest the new cell-phone tower, because of course everyone knows those radio waves can’t be good for us. Before we know it, we’ve transformed those rumors into rock-solid certainty in our minds, based on scant scientific evidence. Flimsy logic, to be sure, but it will do in a pinch, if a whole belief-system is at stake.

Here are Halvorson-Boyd and Hunter again:

“Americans in the United States in the twentieth century hold some basic beliefs about life: that illness is caused by a known agent and can be cured; that if we follow the dictates of a healthy life-style, we are protected from sickness and even death; and that we can choose when and how we die. As cancer survivor Neil Fiore says in The Road Back to Health: Coping with the Emotional Aspects of Cancer, ‘The expectation of an understanding and controllable world is so deeply embedded in the modern mind that when horrific events occur we tend to attribute them to a logical, cause-effect relationship, rather than acknowledge that some things are still beyond our human understanding and the control of our technology.... As attempts to explain uncontrollable events, blame and self-blame are particularly damaging to one’s ability to cope with cancer.’” (p. 108)

We cancer survivors are mourning a multitude of losses. Few areas of our lives have been left untouched by the disease. Of all these losses, the loss of our cherished, irrational certainties may be among the most debilitating. Cancer has bestowed on us younger survivors a kind of wisdom, wisdom most of our peers won’t gain until they’re much older and facing health challenges of their own. Once we were relaxing in the soft candlelight of old and comfortable certainties. Abruptly, cancer turned on the overhead lights, and now we’re left blinking in their harshness – wiser, perhaps, but not necessarily happier.

In ancient Norse mythology, Odin, chief of all the gods, is offered the gift of wisdom. The gift, however, comes at a steep price. Odin must give up one of his eyes in exchange. So eager is Odin to obtain wisdom that he reaches into his eye-socket and plucks out his own eye. He undergoes terrible pain and lifelong disability in order to become wise.

Those ancient Scandinavian people were onto something. Wisdom never comes cheap. Always it demands something of us, by way of sacrifice.

None of us cancer survivors chose this kind of wisdom. But we do get to wear the eyepatch.

July 13, 2008 - Mind-Body Medicine Stories

Late this afternoon, Claire and I are sitting on the screened-in porch of our little house in the woods. It’s been raining softly most of the day. We have neither energy nor desire to do anything other than just sit here. After all the frenetic days of getting ready for the trip, a long day of driving and another day of settling in, we’ve finally hit rock bottom. We’ve arrived. We’re officially... on vacation.

The first book I picked up to read, out of the pile I brought with me, was one I’ve been hoping to get to for some time: The Cure Within: A History of Mind-Body Medicine, by Anne Harrington (Norton, 2008). I found it so lively and fascinating, I plowed right through it.

Harrington heads the History of Science Department at Harvard. In this wide-ranging survey, she traces the history of a very old idea that’s continued to bob to the surface, despite periodic attempts by some medical scientists to push it back down: the idea that our state of mind influences our bodily health.

The movement called “mind-body medicine” – if it can indeed be called a movement – is fairly amorphous. It contains within it everything from serious scientific studies to absolute quackery. Rather than trying to portray it as a coherent system, Harrington wisely chooses to tell stories. She identifies six signature “narratives” that come up again and again, across the generations:

1. The Power of Suggestion – Beginning with roots in religious exorcism rituals and continuing through the rise of mesmerism (later known as hypnotism) in the 18th and 19th centuries, this narrative culminates in the more recent understanding of placebos as something that may have real therapeutic value. Even skeptical, post-modern folk continue to respond to what has been called “the power of suggestion,” especially when mediated by a doctor or other authority-figure we trust.

2. The Body that Speaks – Beginning with the work of Freud, Harrington traces the efforts of various pioneers of psychology to listen to what their patients’ bodies are saying: not just the quantifiable messages of blood counts and body temperature, but also more subjective messages related to state of mind. From primitive Freudian notions of “hysteria” in women, through studies of “shell shock” (later, post-traumatic stress syndrome) in soldiers, through now-discarded truisms like stress as the cause of stomach ulcers, this narrative has evolved through many incarnations. The saga continues to be told by modern practitioners like cancer-treatment guru Bernie Siegel, who – rightly or wrongly – traces the roots of many cancers to emotional unease.

3. The Power of Positive Thinking – From “faith-healing” miracles at Lourdes, through Mary Baker Eddy’s Christian Science, through Norman Vincent Peale’s “power of positive thinking,” through Norman Cousins’ laughter therapy of the 1970s, to AIDS activists’ embrace of the self-healing concept in the 1990s, Harrington describes the persistent idea that we can think our way to better health.

4. Broken by Modern Life – Before the mid-20th century, the concept of “stress” was nothing more than an engineering term. But then, beginning with the pioneering work of psychologist Walter B. Cannon at Harvard (who identified the “fight or flight” response), and continuing through Hans Selye, who popularized the idea of stress as the signature problem of the modern era, stress is now on everybody’s mind. We’ve heard of the “Type A” personality that’s said to be at greater risk of heart attacks, and we’ve heard how stress-management techniques have helped AIDS patients maintain a healthy immune system. Can anyone doubt that psychological stress is real, and has an impact on physical health?

5. Healing Ties – “If two lie together, they keep warm,” observes the book of Ecclesiastes, “but how can one keep warm alone?” To that ancient wisdom, Harrington might add, “how can one stay healthy alone?” From stories of close-knit, ethnic communities whose members are inexplicably spared the worst of certain diseases, to tales of isolated, sickly children in orphanages who were rarely picked up and cuddled, to support groups that keep cancer survivors healthy, there’s ample evidence that social relationships play a big role in our health.

6. Eastward Journeys – The more disenchanted we in the industrialized West come to feel about our mechanistic, often soulless society, the more some of us are turning eastward, borrowing insights from ancient spiritual practices of India, China and Tibet. Harrington tells the tale of Harvard physician Herbert Benson’s interest in Transcendental Meditation – which he later secularized as “the relaxation response” – and of the east-west migration of practices such as acupuncture and qigong into complementary treatments for cancer.

Reflecting on Harrington’s rich depiction of mind-body medicine, I have to say there’s something troubling about it. If the mind can influence the body in the direction of either health or illness, then what does that say about those who become sick? Are we who have cancer somehow deficient in our thinking? Should we, the victims, be blamed?

Harrington is alert to this problem, mentioning it on several occasions throughout her book. One of the most memorable is connected with her quotation of a “darkly comic” 1940 poem of W.H. Auden, called “Miss Gee.” It’s about an elderly spinster who gets cancer, which her doctor attributes to her tightly-buttoned emotional life.

Here’s an excerpt:







“She bicycled down to the doctor,
And rang the surgery bell;
‘O doctor, I’ve a pain inside me,
And I don’t feel very well.’

Doctor Thomas looked her over,
And then he looked some more;
Walked over to his wash-basin,
Said, ‘Why didn’t you come before?’

Doctor Thomas sat over his dinner,
Though his wife was waiting to ring,
Rolling his bread into pellets:
Said, “Cancer’s a funny thing.

‘Nobody knows what the cause is,
Though some pretend they do;
It’s like some hidden assassin
Waiting to strike at you.

‘Childless women get it,
And men when they retire;
It’s as if there had to be some outlet
For their foiled creative fire.’” (p. 90)

(The “rolling his bread into pellets” is, I expect, a reference to the fact that some early placebo pills were made of bread.)

Ought cancer survivors to be blamed, somehow, for some “foiled creative fire” that has rendered us susceptible to disease? Harrington urges caution. She’s well aware that the insights of mind-body medicine can be a double-edged sword. For that reason, she concludes her book by urging that these healing narratives be used with discretion. Such stories must be used descriptively, not prescriptively. They help us “bridge the lacunae in our thinking.” Even though the use of such narratives may seem, to some, unscientific, medicine still ought “to embrace them as part of its map and part of its territory alike” (p. 255).

The Cure Within is a satisfying read. Check it out.

July 11, 2008 - Off to the North Country

Today we're headed up to the North Country - our "camp" in Jay, New York, just east of Lake Placid. Claire and I both have some vacation time - hers shorter than mine, but we'll make the best of it. Our klds - as well as our sister-in-law, Eva, and her daughter, Elizabeth (who live with us) - will hold down the fort at home.

Here's a picture of our place in Jay. (We do rent it out, in case anyone's interested.)

We have no internet access in Jay (no landline phone, either). From now through early August, the only way I'll have to maintain this blog is by using the local public-library computer in AuSable Forks, or by bringing my laptop into the public library in Plattsburgh (a 45-minute drive away), where there's a free wireless hotspot.

I do intend to keep up blogging. It just may not be as frequent as usual. So, stay tuned...

"In returning and rest you shall be saved; in quietness and in trust shall be your strength."

- Isaiah 30:15

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.

July 8, 2008 - Way to Go, Researchers!

I’m on vacation. Before heading off to our Adirondacks place for some quiet times in the woods, I’m catching up on some mail, here at home.

Reading through the Spring, 2008 newsletter sent out by the good folks at the Lymphoma Research Foundation, I come upon an article about recent research developments in the treatment of indolent (follicular) lymphoma. Here are some highlights:

“Oncogenesis. Scientists are investigating oncogenesis, the molecular and cellular changes associated with cancer development, to identify precursors of follicular lymphoma disease. By identifying molecular and cellular differences among tumors, scientists hope to predict the course of disease, close in on the best choice of treatment for an individual patient and identify new therapeutic targets.

Antibodies and beyond. To add to the list of follicular lymphoma therapies, many monoclonal antibodies are being tested – including several ‘second generation’ anti-CD20 antibodies, which purportedly have advantages compared to rituximab. Antibodies with alternative targets are also being studied such as CD5, CD23, CD30, CD40 and CD80. Despite some initial failures of cancer vaccines, some researchers remain optimistic about their therapeutic potential. Researchers are pursuing additional biologic agents that may prove useful in follicular lymphoma management – bortezomib and temsirolimus among them – but many questions remain about their potential.

Transplants and toxicity. New agents and approaches are also under development to minimize the toxicity associated with stem cell transplants – notable among them, the new non-myeloablative transplantation option, which uses much lower doses of conditioning therapy to prepare patients for transplant.”

A few of these things I’m familiar with. Rituximab is, of course, the scientific name for Rituxan, the monoclonal antibody medication I received along with my chemotherapy. That drug seems to have done the trick for me (at least in fighting off the aggressive lymphoma I had, that hasn’t come back), but it’s good to know there are even more effective drugs in the research pipeline.

The “non-myeloablative transplantation option” (when you’ve said that, you’ve said a mouthful) is exactly the sort of stem-cell transplant they were recommending to me, up at Hackensack University Medical Center last September. It involves lower-dose chemotherapy as the first stage of treatment, prior to the transplant – which minimizes side effects and lowers the risk of life-threatening complications from infections. It’s nice to know I’ve been talking with doctors who are on the cutting edge of stem-cell treatment research – so that, when and if it’s time for me to go for one of those, they’ll be guided by the latest treatment protocols. This also means that, the longer I wait, the more likely it will be that the risks will have diminished even further.

So, let’s hear it for the cancer researchers! They’re making wonderful progress.

July 6, 2008 - Cancer on $5 a Day

Cancer on $5 a Day* (*chemo not included) is the title of a book by comedian Robert Schimmel (Perseus Books, 2008). So, who makes jokes about cancer? Only someone who has it.

Sometimes you’ve just got to laugh. Especially if you’re a comedian.

The day he was diagnosed with non-Hodgkin lymphoma, Schimmel made a joke about it. To his doctor. At the Mayo Clinic.

There’s the doctor, probably feeling all nervous about having to deliver such devastating news to yet another patient. He puts on his medical game face. There are two kinds of lymphoma, he tells Schimmel: Hodgkin’s Disease and Non-Hodgkin’s Lymphoma. He writes the words on a pad of paper, for extra effect. “You have Non-Hodgkin’s Lymphoma,” he intones.

“Just my luck,” deadpans Schimmel. “I get the one not named after the guy.”

The doctor is quick on the uptake. “Well, if you can find something funny the moment you get the diagnosis, you’re going to be okay.”

Let’s let Schimmel tell his own story from here:

“Poof. The joke brings a moment of relief. Of hope. The tension in the room escapes. It’s as if we're encased inside a giant balloon, and, pop, I’ve stuck a pin in it and let the air out. All that’s left now are the five of us and Mr. C, the rampaging rhinoceros in the room.

Amazing when you hear that word.

Cancer.

Cancer.

I know that for some people just hearing ‘You’ve got cancer” means they’re dead. Bam. Might as well stop at the mortuary on the way home and pick out the casket. Life over. And the buzzer sounds. Ball game.

And I know that there are other people, loved ones, sitting bedside, who immediately say, ‘Don’t worry, you're not going through this alone.’

Yeah? When they lower me into the ground, are you jumping in, too? I don’t think so. I’m taking this death cruise all by myself. I know that much.

What’s strange, but not surprising, is that when I hear the word, my first reaction, my initial instinct, is to go for the laugh.

It really is. I don’t plan it, don’t think about it. I just go for it. I realize instinctively that even though I’ve just been told I have cancer, I haven’t been told that I’m going to die. And to prove it, I’m going to do the one and only thing that shows that I am very much alive:

I am going to make the audience laugh.

It’s a small house tonight – my mom, my dad, the lump doctor, and my oncologist – but they’ve paid for their tickets (well, it’s co-pay). They’re here for the show and I’m not going to let them down. I’ve still got my sense of humor, my edge. And that means I’m alive!” (Pp. 14-15)

Schimmel’s first reaction is to go for the laugh. It’s what he does.

So, what was my first reaction to my own NHL diagnosis? I started a blog. A place to reflect on the theological and spiritual meaning of what I’m going through, and bounce it off a biblical text now and again.

That’s because I’m a preacher. It’s what I do.

Schimmel’s doing better now, by the way. His chemo treatments put him in remission. He’s come up with these “simple, yet profound life lessons” as a result of the experience:

“Keep your sense of humor, no matter what.

Create a purpose, a focus, and never take your eyes off it.

Figure out what’s important to you. What’s really important.

Be open. Try anything. You never know.

Love. You need love. Tons of it. A s***load of love.

Sometimes you need to be selfish.

You need support. You’re in this alone, but you can’t fight it alone.

The most precious thing you have is time. Don’t waste it.

You’re only human.

And, finally, once again –
Laugh.” (pp. 185-186)

I suppose each of us cancer survivors reacts to the News (that’s News with a capital “N”) in our own unique way. Our reactions are true to who we are, and to what we spend most of our non-cancer time doing.

There’s no right or wrong way to be a cancer survivor. We are who we are. We choose the path that works for us.

July 4, 2008 - A Senator's Legacy?

According to management and life-planning guru Stephen Covey (from the subtitle of his book, First Things First), the purpose of a human life can be summed up in four essential points, all of them beginning with the letter "L": "to live, to love, to learn, to leave a legacy." That last point, the legacy, is often mentioned with respect to politicians – especially when they're getting ready to leave office.

Senator Ted Kennedy has a serious case of brain cancer, that probably means he's in his last months in office (see my June 6th blog entry). Kennedy's had a long, distinguished and sometimes controversial career in the Senate. A July 2nd article in the Boston Globe hints that his most cherished dream, when it comes to his own political legacy, just may be universal health care (Lisa Wangsness, "Kennedy leads renewed effort on universal healthcare").

The Globe article reports on concrete steps Kennedy's key aides have been taking, in concert with other leaders in government, to plan for a swift, hard, bipartisan push to pass a universal healthcare bill in the first few months of the next President's tenure.

Kennedy's surely counting on his close ally, Barack Obama, to become the next President – and he is, in fact, leading in the polls. History has shown the first-year "honeymoon" of a new Presidency to be the last, best opportunity for getting history-making legislation through the Congress (think FDR's New Deal, or Johnson's Civil Rights Act). The Senator's aides are quietly laying the groundwork for such an effort, in the hope of launching it before their boss becomes too ill to lend his support.

As the article says, Kennedy and his allies are trying hard not to repeat mistakes that were made the last time there was a major push for healthcare reform:

"The last time a national healthcare plan was attempted, under President Clinton in 1993, the presidential panel charged with devising a proposal was widely criticized for not consulting enough with Congress, and protracted disagreements erupted, delaying its progress for months and ultimately resulting in its demise. Kennedy's effort appears to be designed to identify areas of common ground between Democrats and Republicans, business and labor, providers and insurers, and others before the new president takes office.

‘The senator is trying to learn from health reform attempts in the past and to build a fair amount of consensus among his Senate colleagues, House colleagues, and the Obama campaign . . . and find a strategy that could carry with some momentum into the new administration,' said Dr. Jay Himmelstein, a health policy specialist at University of Massachusetts Medical School and a former Kennedy staff member who has been involved in the talks."

For Senator Kennedy, this is personal – and has been so since long before he got sick. He's always been at the forefront of healthcare-reform efforts. This time around, the very fact of his illness may not only put a human face on this complex issue, but also provide an emotional boost that could push the effort over the top.

Not that Ted Kennedy has to worry about healthcare coverage himself. A very wealthy man, he could pay his own cancer-treatment bills out of pocket, without ever tapping the unparalleled medical insurance he receives as a member of Congress. Yet, to the extent that the Senator's physically able to stand up and debate the issue, his very presence will serve as a reminder of the human impact of the legislation.

The article continues,

"‘You have got to think this will be the Ted Kennedy Health Reform Act, because he's a beloved figure and he's championed the issue for so long,' said John Rother, policy director for the AARP, which has been involved in the discussions. ‘There are a lot of unknowns right now, but what we do know obviously is he is very close to Obama, and he also has quite a network of health policy experts that he can draw from.'

Melissa Wagoner, spokeswoman for Kennedy, added that ‘Making sure each American has access to quality, affordable healthcare is the cause of Senator Kennedy's life.'"

It's no secret, to readers of this blog, that universal healthcare is a cause I've come to believe in very deeply. I feel incredibly fortunate to have had access to remarkable (and very costly) medical treatments that have probably saved my life. These I could never have afforded without insurance. I've also heard enough horror stories – not only in the news, but also firsthand, in my ministry – of uninsured people who have fallen through gaping holes in the vaunted social "safety net."

"Let them go to the Emergency Room," said President Bush, not long ago – in a remark that sounded eerily similar to Marie Antoinette's apocryphal "Let them eat cake" gaffe.

Here's an example of the sort of thing that can happen to poor patients who go for help in an underfunded emergency room, here in the U.S.A.:



More on this shocking story, with a longer set of clips from the surveillance-camera tape, can be found HERE.

Senator Kennedy and his allies have an uphill struggle ahead of them. Misinformation about universal health care in Europe and Canada is rife, and irrational fears abound.

I can't help but think, on this July 4th holiday, that there may be no more important present-day declaration of independence for the American people than this: independence from the fear of losing everything – including even our lives – to skyrocketing healthcare costs.