May 21, 2007 - Healing or Wellness?

This morning I drive over to visit the newly-opened local affiliate of The Wellness Community – a national organization providing “professional programs of emotional support, education, and hope” to people with cancer. It’s in Eatontown, about 25 minutes north of here. They have a great location, just off the Garden State Parkway. The paint on the meeting rooms is still fresh, and not all the furniture has yet arrived, but it’s clear the staff and board members have great plans for the place. Classes, support groups, yoga, qigong, a resource library – all these will be offered to cancer survivors, at no charge.

I’ve gone up for one of their scheduled Newcomers Orientations, but today I’m the only one there. So, my orientation takes the form of a one-on-one chat with Jan, the program director. It turns out Jan knows my wife, Claire. She’s a clinical social worker who served on the same hospice team with Claire about 10 years ago.

In the course of our conversation, the word “healing” comes up. Jan explains it’s the philosophy of The Wellness Community to avoid that word as much as possible, favoring “wellness” instead. The reason is that many people associate “healing” with cure – and, of course, not all cancers can be cured. Would it not give cancer survivors false hope to speak of healing, when many of them will eventually die of the disease, anyway? Wellness is a better word – or, so declared the Community’s late founder, Dr. Harold Benjamin, in his book, From Victim to Victor. I have the sense that Jan may not be 100% on board with this impoverished understanding of healing, but she gamely presents the party line.

It seems to me that, in the 25 years or so since the first Wellness Community was founded, the meaning of the word “healing” has evolved and expanded. Now, it describes so much more than the mere cessation of physical disease. I know, from conversations with Claire about hospice ministry, that hospice team members consider the word to have multiple levels of meaning. Even death, in certain circumstances, can be considered a healing experience.

Leo Tolstoy – the Russian novelist and mystic – once observed that our true life is not the ordinary, material life we see here on this earth. Rather, it is the invisible, inner life of the spirit. The relation of our physical life to our spiritual life is like the relation between the elaborate scaffolding that construction workers put up, and the building itself.

The scaffolding displays the general shape of the true building. It’s easy for uninformed passersby to mistake this aggregation of steel pipe and wooden planks for the real thing – but it’s not. The scaffolding is important, and very necessary to the work of construction, but it’s only temporary. The scaffolding masks the true structure, which is slowly taking shape within, under the tarpaulins. One day the scaffolding will come down, and the true structure will be revealed.

That inner place is where healing happens. There’s no need to shy away from that word – even in cases when it’s clear, to the anxious circle of family and friends gathered around a hospital bed, that death is near.

"For we know that if the earthly tent we live in is destroyed, we have a building from God, a house not made with hands, eternal in the heavens. For in this tent we groan, longing to be clothed with our heavenly dwelling — if indeed, when we have taken it off we will not be found naked. For while we are still in this tent, we groan under our burden, because we wish not to be unclothed but to be further clothed, so that what is mortal may be swallowed up by life." (2 Corinthians 5:1-4)

Wellness is a great word: but healing is better.

May 17, 2007 - Santa of the Chemo Suite

OK, this story's a bit of a tearjerker, but I can't resist posting it. It's one of those little vignettes that portrays the humanity of cancer survivors, even as we're surrounded by all that medical technology.

A cancer patient named Michael Lewis posted it in the response area of Leroy Sievers' "My Cancer" blog on the NPR website. (It's part of Leroy's May 15th blog entry, in case any of you want to look it up in the original context.)

One thing I like about the story is the way it demonstrates how life goes on, even in the midst of cancer treatment...

Early December of 2005 I received a whole new attitude on looks in an elevator at my oncologist's. I'm a 64 year old guy, 5'9", with the rather unattractive little belly we fellows sometimes get. I'm also balding and sport a full, neatly trimmed white beard. The steroids taken with chemo created what my kids called "chipmunk cheeks". I admit that around Christmas time, I let the beard grow a bit and though I have never taken a job as a Santa, it would not take much to do so. I love it that, sometimes, at the market, I get the wide eyed (usually hopeful) glances from little ones. It sure is fun.

Bone tired from chemo, I entered the elevator, really not paying much attention to those around me. I have become accustomed to those tired looks in others and rarely have trouble sorting out the patient from the caregiver. But this day I became aware of the beautiful blue eyes of a six or so year old girl staring up at me. People came off and on the elevator. Finally, I knelt, looking straight into those eyes and, with my best Santa smile quietly said, "Ho Ho Ho". Her eyes widened for just a moment. Then she smiled and said, "Are you really Santa?"

I gave my stock answer, " No, but I help Santa a lot." thinking of the many gifts I had yet to buy. Thinking that this might indeed be the last Christmas with my little blue-eyed girl of 25.

Just then I realized that under her pretty blue scarf, this beautiful child had absolutely no hair. Thankfully, the elevator door opened and some inertia pushed us into the large waiting room.

Ashley, as I was to come to know her, sidled down the long row of chairs. She settled into the chair next to me. We made eye contact, she with a quiet, wistful look only little girls are capable of. I smiled and said, "Hi". We glanced at each others' wrist bands.

She began her conversation casually, as though she were talking about one of her dolls, "I've been very, very sick." she said. I nodded, "I know about that. I've been sick, too."

We continued our conversation for some minutes until her oncology nurse quietly sat by Ashley's side. "I have to go now. Would you walk with me in there?" blue eyes imploring.

"In there" was to the oncology suite. Through a door and down the long corridor I had long ago christened "Valley of the Shadow". Mom and nurse nodded at my enquiring eyes. Ashley slipped her small hand in mine as we walked a long, curtain draped hall to the bed which would be hers today. I sat in the chair beside her as the nurse prepared all the paper wrapped implements. Ashley held my hand. Thank God for lovely oncology nurses who know their business. Small tears at the pain were wiped away. We sat quietly as bags were hung. Chemo is a busy time.

Anne, my oncology nurse, rushed past the room, did a huge double take and blurted, "Michael, I've been looking all over for....." Onc nurses are busy folks and don't like their schedule messed with. But I'm proud of her. She got it right away. Smiling softly at Ashley she said, "I have to take him away now."

Anne and I just cleared her curtains in the Valley before the tears overcame us both. Curious heads bobbed out from curtained cubicles as Ashley's bright voice echoed from linoleum floors, "Thank You, Santa Claus!"

So if that image in the mirror bothers you today, just be thankful that you don't look like me...like Santa Claus. It can be brutal.

As you said, Leroy, "..who ever said this was fair?"

Michael Lewis
Seattle

May 10, 2007 - The Stupidest Tea-Party

“There was a table set out under a tree in front of the house, and the March Hare and the Hatter were having tea at it.... The table was a large one, but the three were all crowded together at one corner of it. ‘No room! No room!’ they cried out when they saw Alice coming.”

– Lewis Carroll, Alice in Wonderland, chapter VII, “A Mad Tea-Party”

Today I read an article about a situation that’s just about as unhinged as Lewis Carroll’s famed Tea Party. According to a recent study, “U.S. hospitals are charging uninsured patients about two-and-a-half times more than those with health insurance....”

Think about that, for a moment. What sense could it possibly make to charge MORE to people who have no insurance – to people who are not only financially strapped, but sick besides?

“‘The mark-up on hospital care for these individuals, especially for those who can afford it least, is unjustifiable,’ said Gerard Anderson, director of the center for hospital finance and management at Johns Hopkins University's school of public health, and study author.”

Thank you. It’s nice to hear SOMEBODY making sense.


‘Have some wine,’ the March Hare said in an encouraging tone.

Alice looked all round the table, but there was nothing on it but tea. ‘I don’t see any wine,’ she remarked.

‘There isn’t any,’ said the March Hare.

‘Then it wasn’t very civil of you to offer it,’ said Alice angrily.

‘It wasn’t very civil of you to sit down without being invited,’ said the March Hare.

Now, here’s something even more bizarre. Hospitals are billing the uninsured at a rate of two and a half times greater than they bill the insured, but they realistically expect to collect only about ten percent of what they’re billing:

“But patients without health insurance, about 45 million people in the U.S., lack the ability to negotiate. As it stands, hospitals only collect about 10 cents on the dollar charged to uninsured patients, Anderson said.”

So, every time a hospital bills a patient – EVERY time – the amount billed has NO relation to the real cost of the services provided. If the patient’s insured, the hospital bills for the amount the insurance company says it can bill. If the patient’s uninsured, the hospital jacks the sticker price up to an impossibly high amount, an amount the hospital knows it’s not going to get in a million years. It’s an amount calculated to strike terror into the heart of the hapless, uninsured patients – who slit open their window envelopes, weeks later, and instantly have visions of losing home, car, livelihood, everything.

I was at a meeting last week, where I learned that unpaid medical bills are the leading cause of homelessness among the working poor.

Is it any wonder that, the next time these patients get sick, they will do everything possible to avoid seeking medical help? Is it any wonder that a certain percentage of these uninsured patients will DIE as a result of that desperate decision – as more than 18,000 uninsured Americans do die needlessly, every year?

“‘Take some more tea, the March Hare said to Alice, very earnestly.

‘I’ve had nothing yet, Alice replied, in an offended tone: ‘so I can’t take more.’

‘You mean you can’t take less,’ said the Hatter: ‘it’s very easy to take more than nothing.’

‘Nobody asked your opinion,’ said Alice.

‘Who’s making personal remarks now?’ the Hatter asked triumphantly.

“The real problem of course, is that we live in a country where we don’t guarantee coverage for everybody,” [AHA policy analyst Carmela] Coyle said."

THANK YOU! It’s nice to hear somebody else making some sense, for a change – so very refreshing. But, the strange creatures gathered round the table aren’t hearing. They’re still not pouring any tea.

“This piece of rudeness was more than Alice could bear: she got up in great disgust, and walked off: the Dormouse fell asleep instantly, and neither of the others took the least notice of her going, though she looked back once or twice, half hoping they would call after her: the last time she saw them, they were trying to put the Dormouse into the teapot.

‘At any rate I’ll never go there again!’ said Alice. ‘It’s the stupidest tea-party I ever was at in all my life!’”

May 7, 2007 - Glad I Didn't Miss It

Every once in a while there comes one of those moments that makes a parent’s heart fairly burst with pride. Yesterday afternoon, our son, Benjamin, had his senior recital at Monmouth University, where he’s a music major (soon to graduate). His instrument is guitar, and he also sings.

This e-mail he shared with me – from Monmouth University music professor David Trippoldt to Department of Music and Theater Arts chair, John Burke - says it all...


Dear Jack,

This is only the second recital that I've attended at MU that I had wished that we had a designation of credit with honors. Ben Wilton has set the standard for what a "popular" music venue recital can be. He beautifully navigated a recital of many musical genres commencing with two classical guitar pieces, then four acoustic folk and pop classics, playing and singing such beloved tunes as Norwegian Wood, by John Lennon and "Blowin' in the Wind," by Bob Dylan, then to electric lead in a jazz trio, playing such classic tunes as "Four" by Miles Davis, "Equinox" by John Coltrane, and "Take Five," by Paul Desmond. Finally, he performed two original songs with his rock band named "Garuda." The group played very, very well, the drummer our very own Anthony Leprotto, offering up fine guitar solo work in a quasi latin/rock mixture. The concert consisted of 15 pieces in all, each performed with great style and with careful attention to stylistic accuracy, ensemble balance and blend. Ben sang well and played the guitar exceedingly well, improvising most effectively in the jazz pieces. The very satisfied audience of 75-90 included Professor Rotella and Laura Dubois. This comes on the heels of Ben's super performance as bass soloist in the Haydn mass a couple of weeks ago. This is what a popular musician should be - musically literate, historically grounded, and artistically sensitive.

Bravo Ben!

Dave T.

I’ve heard people with cancer say things like, “I want to be around to see my child graduate from college... get married... (whatever).” I’m just glad I’m in remission, and that I had this opportunity to hear this fantastic concert. Truly, it's a day I’ll always remember.

Enough said.

Ben, we love you, and we’re very proud of you.

May 5, 2007 - Losing My Edge (Or, Regaining It)?

“Procrastination,” they say, “is the thief of time.” That particular thief’s been nosing around my house in recent months, and I don’t like it.

Lately, I’ve been feeling overwhelmed by various long-term projects, both professional and personal. I’ve gotten myself into the position more than once of putting things off till the last minute, then working frantically to meet the deadline. Some deadlines I’ve missed altogether.

E-mail is part of the reason. Like a lot of people these days, I feel swamped by a rapidly-rising tide of e-mails, many of them trivial. Reading and responding to these ephemeral messages devours a growing amount of my time. We’re all learning how to use this technology, which is still in its infancy. Some of us are more adept than others. It’s so easy to click on our mail program’s “forward” or “reply all” buttons, thereby multiplying exponentially the hours everyone has to spend slogging through these messages.

Yet, e-mail isn’t the only reason. I’m coming to realize that one of the side-effects of cancer treatment, at least for me, is a cranky refusal to put up with the trivial. At times, I’ve had a devil-may-care attitude about lots of mundane-but-important tasks: “I’ve just been duking it out with cancer, and you dare ask me to fill out my income-tax return?” (I’ve gotten an extension on my taxes, this year.) Life is filled with deadlines: and, cancer or no cancer, many of them come back and bite you eventually, if you keep putting them off.

Post-chemo recovery is deceptive: you feel like you’re back to normal, but you’re really not. There’s a certain lack of focus, a fear that perhaps you’re losing your edge. With cancer, you just don’t wake up someday and say, “I’m better, now.” The PET scan results may keep coming back clean, but that doesn’t mean you’re not still living with certain more subtle, long-term effects of the disease.

Stephen Covey’s bestseller, The Seven Habits of Highly Effective People, contains a memorable illustration he calls “sharpening the saw.” Covey tells of two lumberjacks who are laboring hard to cut down a mighty tree, using an old-fashioned cross-cut saw. Back and forth they pull the saw, their motions synchronized in perfect rhythm. Yet, the longer they work, the less effective their labors become. Each stroke seems to be taking a smaller bite out of the tree trunk. Stubbornly, the laborers keep sawing.

What they need to do, Covey says, is to stop and sharpen the saw. But there’s something soothing, even hypnotic, about the rhythm of the sawing. The more exhausted they become, the more easy it is to imagine that if they just keep going, they’ll finish the job. “Who’s got time to stop and sharpen the saw?" they think to themselves.

I’m still trying to figure out what it means for me to sharpen the saw, in these months after cancer treatment.

May 3, 2007 - Cancer Sound Bites

This evening, I attend an organizational meeting for a community-action group that's seeking to address the homelessness problem in our county. At the meeting, there are several people I know from other gatherings of this sort, church folk from other congregations in the area. Milling around in the time before the meeting, several of them come up to me and ask how I'm doing, in a focused way that clearly indicates they want to hear about my medical condition. Word does get around – or, more accurately, it got around a long time ago, but people evidently still look at me and think, "Cancer."

I respond with the answer I've gotten used to giving, in recent months: I'm in remission, finished chemo a year ago, getting scans every three months – so far, so good. (I use a few more words than that to tell the tale, but that's the gist of it.)

My questioners smile, say they're glad to hear it, tell me I'm looking good. All very warm and supportive, in a casual, "Hey, I haven't seen you in a while" sort of way.

It's a story I've gotten used to telling. One of the life-skills you need, as a cancer patient in remission, is the ability to dispense a summary medical report in succinct, sound-bite fashion, at a moment's notice. Inquiring minds want to know.

I do appreciate the inquiries. It feels good that people remember, and remember to ask. I wonder how many prayer lists I must have been on, back when I was popping prednisone pills and had no hair. I wonder how long this earnest, supportive questioning is going to last – how long before people will look at me, and not think of me as that guy with cancer.

It may be a while.

If I'd been walking around, back then, on crutches, with my leg in a cast, the first word out of people's mouths when they see me, a year later, probably wouldn't be, "How's the leg?" Cancer's different. Once you bear that label, you're tainted. You become the subject of earnest entreaties, far into the unpredictable future. A broken leg will heal; everybody knows that. But cancer? It continues to stalk its victims, its hollow footfalls sounding at a distance. Look back over your shoulder, and you see nothing . But, take a few more steps down the deserted sidewalk, and you hear those footfalls again – or do you?

April 26, 2007 - The New Normal

I read something the other day in Leroy Sievers' blog that got me to thinking about my own situation (Leroy is the NPR journalist who’s been blogging, and broadcasting radio updates, chronicling his cancer story). Leroy – like me, a cancer patient in remission – described his situation as “the new normal.”

When you finish an experience like cancer treatment, you don’t just return to where you were so many months before, and pick up right where you left off. Cancer is a life-changing experience. Once you’ve been awarded the dubious title of “cancer survivor,” you can never go back. Even the people who call themselves “cancer free” – having completed so many years following treatment, without further symptoms – usually continue to live with a certain, low-level fear that the cancer could recur.

It’s more complicated that mere anxiety, though. I don’t mean to give the impression that I’m paralyzed by worry. When I look ahead on my calendar and see a doctor’s appointment, I don’t feel swamped by a wave of dread. Dr. Lerner has been upbeat from the very beginning, observing that my type of lymphoma typically responds well to treatment, and that remissions tend to be long-lasting. I have every reason to expect that his prediction (or, at least, his statement of the law of averages) will prove true in my case. The observation I’m making is more existential than emotional in nature. Cancer changes you. You’re not the same person you were before. It’s hard to describe what I mean by that, other than saying that’s how things feel.

“The new normal” is a phrase some of Leroy’s blog readers have been using in responding to his recent postings, and it’s one that speaks to me, as well. I’d love to be able to say I’m now “back to normal” – indeed, friends and family would very much like to hear me say it – but I can’t. What is “normal,” anyway? Normal is a moving target, these days.

I'm glad I'm no longer where I was a year ago, dealing with chemo. But, on the other hand, I feel that the door back to where I was, pre-diagnosis, is closed and barred. The new normal is the country I now find myself in, and I’m still exploring the terrain.

When I was in the midst of chemo treatments, there was a very clear map to follow. I went from treatment to treatment, weathering the more-or-less predictable side effects. Now, I find myself in a country where many of the old landmarks are no longer recognizable. It’s a better place to be than where I was a year ago, but I’m still trying to figure out how it compares to the place I was in, when I commenced this cancer journey.

The ancient Sophist philosopher, Heraclitus, memorably said that you can’t step into the same river twice. Once you step out of your ordinary, day-to-day life to undergo a season of chemotherapy, when you do finally get back to that river, the waters that once carried you have moved on. There’s a certain continuity, of course, but things feel different, also.

The challenge is letting go of the old normal, and embracing the new.

April 23, 2007 - The Value of a Life

I’ve been thinking – as many others have, as well – of the horrible incident on the campus of Virginia Tech University, as Seung-Hui Cho, a deeply disturbed young man, randomly murdered 32 of his fellow-students and professors. Accounts are now emerging that portray the shooter as a lifelong loner, who had difficulty discerning reality from fantasy. He told roommates, for example, he had a girlfriend who was a supermodel who traveled by spaceship, and that he had recently vacationed in North Carolina with Vladimir Putin. The projects he submitted in creative-writing class were filled with dark fantasies of violence. An English professor who tutored him (after another professor had ejected him from her class for strange behavior) felt so uneasy in his presence that she arranged a code-word her administrative assistant could use to summon police. From a very early age, Cho was so sullen and withdrawn that his family expressed amazement at the diatribes on the video he’d mailed to NBC News. They had seldom heard him speak in such complete sentences.

When all the pieces of the puzzle are assembled, it seems clear that Cho was suffering from serious mental illness, and had been for some time. Everyone knew he was troubled; they just didn’t know how much. The second-guessing is likely to go on for a very long time: why the counselors who worked with him didn’t try to commit him, why he was permitted to purchase guns. But, there may never be any satisfying answers. Cho was a cipher. No one, it seems, had seen all the puzzle-pieces that made up his twisted personality. No one fully understands him, even now.

Thirty-two people – 33, counting him – is a large number. So are the numbers coming out of Iraq daily, as the suicide bombers and the mortar attacks exert their grisly toll. I’ve been through months of very costly medical treatments, aimed at saving my life. It’s disconcerting to hear of how many otherwise healthy lives can be snatched away, in a few brief moments of random violence.

I find it ironic, and sad, that some members of the human race can work so hard to save lives through medical treatment, while others can – with such apparent ease – slaughter so many others. We can all agree that cancer is an enemy that should be fought with every resource at our disposal. Yet, why are we so reluctant to work equally hard to uproot the causes of violence?

The experiences I’ve been through in recent months have focused my thinking very intensely on the value of a human life. So many good people – from the researchers who developed my medicines, to the doctors and nurses who administered them, to the radiologists who puzzled out the images on my scans – have devoted their lives to saving people like me. Life is precious, and worth that kind of effort. When a young man in Baghdad straps plastic explosives around his waist, or another young man in Virginia methodically buys guns, bullets and chains to bar the doors of a building, it seems to negate that good work.

My life is of no more value than those who have fallen in Blacksburg or Baghdad. Why I am still alive and they are not is a mystery. Call it survivor’s guilt, but it’s very real to me these days.

April 15, 2007 - The Only Constant

I've been struggling for a while to put into words what I'm feeling, as a cancer patient in remission, but it's like nailing the proverbial jello to the wall. I'm no longer sick, but I can't declare with complete confidence that I'm well, either. Not while I'm still going for scans every three months.

What is remission, anyway? It comes from the Latin remissio. Its primary meaning is forgiveness: the remission of sins. It can also mean forgiving or canceling a debt – or, a prison sentence. (In the hackneyed words of the film noir ex-con, does that mean we patients-in-remission have "paid our debt to society" – or, more accurately, to the stern gods of modern medicine?)

Running my finger down the list of alternative definitions of "remission" in my Shorter Oxford English Dictionary, I come to these ominous words:

"A reduction in force or intensity; a decrease or abatement of a condition or quality, esp. of heat or cold. MEDICINE. A lessening in the degree or intensity of an illness; the temporary disappearance of symptoms."

Oops. I wish I hadn't read that. I don't like seeing that word, "temporary" – not when it's closely followed by "disappearance of symptoms."

Of course, some cancer remissions go on for years and years, until finally – like some hide-and-seek kid emerging, blinking, into the light, hours after the seeker has given up and gone home – there comes the cautious assessment that there's nothing temporary about this remission at all.

Now that I've got my hair back, and have returned to my normal activities, I've been hearing more and more people ask, "You're cured, right?" (Some folks are very eager, indeed, to hear the "cure" word.)

I usually correct them, saying something like, "No, it's still too early to use that word. I'm in remission. I go for scans every three months. So far, so good." (I wonder, will I ever be able to use that word?)

I've been reading Jonathan Alter's political columns in Newsweek for years. I didn't know, until I saw one of his more recent contributions to the magazine, that he's a non-Hodgkin lymphoma survivor (in his case, it's the mantle-cell variety). Like me, he's in remission. His words capture the odd, in-between state I feel like I'm in these days:

"The only constant in cancer is inconstancy; the only certainty is a future of uncertainty, a truism for all of modern life but one made vivid by life-threatening illness. According to the latest projections, a third of all Americans will be diagnosed with cancer at some point during their lifetimes, most likely when they're old. Many will never achieve remission at all, while the lucky ones like me get to live with a sword of Damocles hanging over our heads. A friend compares his semiannual scans to visiting a parole officer. When the scans are clean, it's worth another six months of freedom, though with no guarantee of extra time for good behavior."

"Lucky," you say – with the sword of Damocles dangling over your head? You call that luck?

In truth, it is. For most blood-cancer patients, the doctors simply don't possess a rubber stamp with the word "cured" on it. My medical file is fated to grow thicker and thicker. Let's just hope it bulges with reports of clean scan results, rather than tracking sheets for new chemotherapy or radiation protocols.

You're right, Jonathan. For people like you and me, the only constant is inconstancy.

April 13, 2007 - The Stem-Cell Mess

Every once in a while, I have the uncanny experience of reading about myself in the news – not some story in our local weekly, but the national news. Today’s article doesn’t mention me by name, but I’m in there, nonetheless.

The article – an editorial in the New York Times – is about stem cells. I’ve long followed the stem-cell debate with great interest – long before I was diagnosed with cancer. It’s a fascinating case, from the standpoint of Christian ethics: rock-ribbed, inflexible moral absolutism vs. cutting-edge medical science that could save lives.

Which is the lesser of two evils? Destroying a frozen embryo that could – if implanted in a woman’s uterus – develop into a viable human being? Or, holding off on medical research that could result in life-saving treatments?

President Bush believes the first option is the worse evil. The Times editorial doesn’t mince words in saying how wrong the newspaper’s editors think he is:

“...one man, President Bush, and a minority of his party, the religious and social conservatives, are once again trying to impose their moral code on the rest of the nation and stand in the way of scientific progress.... The restrictions on federal financing have led to absurdly complicated and costly maneuvers. Scientists are forced to buy extra equipment and laboratory space with private money to perform off-limits research while using equipment and supplies bought with federal money on the permitted stem cell research. In a shocking example cited during Senate debate, a California researcher who had been cultivating stem cells in a makeshift privately financed lab suffered a power failure but was unable to transfer her lines into industrial-strength freezers in another lab because they were federally financed. Two years of work melted away because of this inanity.”

I said, just now, that I’m mentioned in this editorial – but only by implication. As a blood-cancer patient, I stand to benefit from stem-cell research, big-time. Every once in a while, that realization hits me like the proverbial ton of bricks. The anonymous patients who can benefit from stem-cell research are people very much like me: in fact, I am one of them.

Earlier today, I sat in the nurses' room at Dr. Lerner’s office, waiting for my monthly port flush. There were two elderly men sitting on either side of me, both there to get shots: one in his arm, the other in his stomach. What were the medicines they were receiving, through those hypodermic injections? Were they developed through cultures taken from stem cells? If so, were the cells harvested before the Federal research ban? Or did they come from one of the approved “lines,” that the Bush administration has determined can still be grandfathered in, under the law?

This isn’t some moral abstraction. There are lives that will be saved, if the restrictions on stem-cell research are dropped. Real, human lives. Maybe the lives of some of the people sitting beside me in the doctors office. Maybe even my life.

No, for me this is no abstraction. It’s personal.

April 12, 2007 - Running for President, with NHL?

My, but this has been a time for celebrity cancer revelations! Today's newspapers tell of Fred Thompson, former Senator from Tennessee and a star on the highly-rated Law and Order television series, announcing that he has NHL, and is now in remission.

Thompson is also saying he's considering a run for the presidency. A conservative Republican, with national exposure from his TV role as the gruff, politically-savvy district attorney on the popular crime show, he figures he may be just the person to fill the present void in the Republican presidential stable.

What's interesting to me, of course – and, surely, to anyone else with cancer – is that Thompson doesn't seem to think his illness is any impediment to his political ambitions. He's had the disease for over two years. Diagnosed after discovering a swollen lymph node in his neck, he was treated with Rituxan and some localized radiation only – no chemo.

The Washington Post reports that he's got "marginal zone B-cell lymphoma, a relatively rare form that accounts for about 10 percent of all lymphomas diagnosed in the United States." His physician, Dr. Bruce Cheson, of Georgetown University Hospital, says, "His prognosis is excellent. We have patients out for years, leading totally normal lives, doing whatever they want, including running for president." According to Elizabeth M. Adler's Living With Lymphoma – the book I've found most useful in learning about my own situation – marginal zone lymphomas are one of the indolent types of lymphoma: slow-growing and generally responsive to treatment, but not typically characterized as curable.

So, what's Thompson's prognosis? The Post article continues:

"The longest study evaluating the usefulness of rituximab as sole initial therapy for lymphomas similar to Thompson's looked at the experience of 46 French patients. Seven years after treatment, four had died. Fifteen percent of the group were still in remission, with no evidence of disease, which is Thompson's current state. The average time until disease recurred was two years."

As cancer odds go, that does sound pretty good. Still, as a political story, this news is unprecedented. We've just seen a flurry of controversy in the media, over whether or not John Edwards should drop out of the presidential race because his wife is stricken. Now, we see a candidate himself announcing he's got cancer.

I'm glad to see that Fred has been so forthcoming about his disease. Wherever his presidential aspirations may take him, he joins Elizabeth Edwards, Rudy Giuliani and others as a role model of how to keep on living with cancer.

April 11, 2007 - Life Is Short(er)

There's a rather extraordinary interview with Elizabeth Edwards in the April 9th issue of Newsweek. She talks frankly about what it means for her to know that, because of her cancer recurrence, her life will be significantly shorter:

"When I was first diagnosed, I was going to beat this. I was going to be the champion of cancer. And I don't have that feeling now. The cancer will eventually kill me. It's going to win this fight. I come from a family of women who live into their 90s, so it's taken something real from me. There was a time during the day when we were getting test results when I felt more despair than I ever felt in any of the time I had the breast cancer. I have a lot that I intend to do in this life. We're here at the house. I'm going to build paths through these woods so we can take long walks that I intended to take when I was 80. And I have a 6-year-old son. I was going to hold his children someday. Now I'm thinking I have only a slim chance of seeing him graduate high school. How do I accomplish, in what time I've got left, all that I'm meant to do?"

When I was first diagnosed, I went through a lot of that sort of thinking. No sooner did I hear the word, "cancer," than my mind went racing off to the most dire possibilities. I wondered if I'd live out the year. I wondered if I'd ever get to meet the people my kids will marry. I even wondered if it made sense to keep going to the dentist.

Now that I'm in remission, I spend less time in such fatalistic thinking. In my case, it was just borrowing trouble; in Elizabeth's case, with her revised prognosis, it's simply realistic. When people ask how I'm doing, I typically say, "I'm in remission, and we have every reason to expect it will last for a very long time."

But will it? Will the cancer remain at bay, allowing me to live out a normal lifespan? Will I make it to the biblical "threescore years and ten?"...

"The days of our life are seventy years,
or perhaps eighty, if we are strong;
even then their span is only toil and trouble;
they are soon gone, and we fly away."
– Psalm 90:10

It's impossible to say. I'm only 20 years away from that landmark age of 70. Nowadays, with all the centenarians running around (well, maybe not running), even 70 seems way too soon to roll up the awnings. It was different back in biblical times, when life expectancies were shorter. Seventy seemed like a ripe old age, and 80 was serious geezerhood.

Not so, anymore. My mother's going to turn 80 this summer. She just returned home to her retirement place in North Carolina, after an Easter visit with us. She drove her own car all the way up here and back. My grandfather (her father) died a few months shy of 101. He played his last game of tennis on his 80th birthday. When he fell out of a dogwood tree at age 93, breaking his ankle (having climbed a ladder to prune some branches), we kidded him, saying, "Grandpa, you've got to stop climbing trees – it's not like you're 80 anymore!" That sort of longevity was unimaginable, in biblical times.

Do I have the MacKenzie longevity gene? Whether I do or whether I don't is perhaps moot, now that cancer has come into my life. The knowledge of its life-shortening potential, lurking in the shadows of my consciousness, is part of that "toil and trouble" of which the psalmist speaks.

In the film, The Wizard of Oz, the Wicked Witch of the West turns over a large hourglass, and tells Dorothy that when the sands run out, it's curtains for her. I can remember, watching that movie as a young child, feeling terrified by that scene. Some kids were scared of the flying monkeys, but to me there was something far worse. It was that hourglass: the gruesome inevitability of it.

I suppose the filmmakers meant that, once the sands ran out, the witch would return and do Dorothy in. Yet, with the sort of concrete thinking typical of young children, I thought the witch had cast an evil spell over the hourglass itself: as the last grain of sand ran out, Dorothy, too, would slump over, lifeless.

Elizabeth Edwards finds herself contemplating a similar hourglass, these days. I haven't seen that vision yet, myself (despite my early spell of panicky fatalism). I have tremendous admiration for her courageous realism. The sands of her days are slipping away, but her life isn't falling apart, either. She's determined to live as well as she can, for as long as she can.

It's all any of us can do.

April 8, 2007 - Touching Base, On Easter

If last year was my cancer year, then this is my survivor year. What I've been doing, particularly when it comes to milestone celebrations in the liturgical year, has been touching base.

A cardinal rule of baseball is that a runner has got to touch all the bases. If you miss one, you've got to go back and rectify your error. I feel like there were a lot of bases I missed last year, so as I come upon them again, I've got to make sure I touch them.

If the liturgical year is a baseball diamond, then Easter is surely one of the bases. While I haven't referred to my medical situation in most of my sermons, as I come up to a base like Christmas or Easter, I feel I've got to make some reference to it. Partly this is because I know the "C & E" crowd is different from the folks I see on a typical Sunday. Many of these are people I know, though not well. Many of them are aware of my recent medical history, but haven't been here to see that I'm really doing OK. I said something about being a cancer survivor in my Christmas Eve sermon, so now as I come up to the Easter base, I feel like I've got to touch it, as well. This is particularly true of Easter, because that was the one major holiday I missed completely, because of my illness.

Here's some of what I said in my Easter message:

"As many of you know, on Easter last year, I was sitting in the Manse, too sick to come across the street. I could see many of you, though, through the curtains, coming and going in your Easter finery. On the Wednesday before last Easter, I spent eight hours sitting in a lounge chair in my oncologist's office, as chemotherapy drugs dripped into the port I still have implanted in my upper chest. By the time Easter Sunday rolled around, I felt so weak, I probably couldn't have sat upright in a church pew for an hour, let alone stood here at the pulpit and delivered a sermon. You all muddled through without me – you did just fine, as a matter of fact – and now, a year later, I stand here before you: a witness to the resurrection.

When I say that, I don't mean to claim I had any mystical visions of Jesus. Nor do I mean to say that God healed me in some spectacular, supernatural way. God used all the tools of modern medicine to put my cancer into remission.

What I do mean to say is that I've learned some things, in the past year or so, about resurrection faith. I can't stand up here today and present incontrovertible historical evidence that, round about the year 30 A.D., a dead rabbi by the name of Jesus got up and walked out of his tomb. I believe that he did, but I can't prove it to you. But I can tell you something I have learned: that the story of his rising is true for me, now more than ever."

We preachers are in a dilemma, when it comes to Easter. How do we convey the truth of something that happened centuries ago, for which we have no credible evidence, only secondhand testimony? Recently, I read an article by Diana Butler Bass, who was addressing this very question. Coming out of a liberal Protestant background, whose preachers tended to treat biblical miracles figuratively, she recalled being curious about what one particular preacher, Episcopal Bishop Daniel Corrigan, would have to say about the resurrection. Surprisingly – after what she'd heard him say about other miraculous events – he affirmed its truth, unequivocally. When someone asked him if he believed in the resurrection, the bishop replied, "Yes. I believe in the resurrection. I've seen it too many times not to."

I guess that's where I am, too. I've seen resurrection in other people's lives. I've felt its power in my own. The resurrection of Jesus Christ is not so much a historical reference, a single point in time, as an ongoing process. We can spend all our time peering into an empty tomb, if we want – discussing the details of what may or may not have happened there – but there's no real future in that. "He is not here, but has risen," say the angels to the women, in Luke's Easter account. Sooner or later, we've all got to decide whether we wouldn't do better to look for the risen Lord not among the tombs, but rather in human lives. There is where we find him. There, he continues to be active.

That's what I'm about these days, anyway, as I round another base.

April 7, 2007 - Holy Saturday Thoughts

Today, I'm still thinking about a wonderful sermon I heard yesterday, at our community Good Friday service. It was preached by my friend and colleague from across the street, Father John Thompson-Quartey, pastor of St. Mary's By-the-Sea Episcopal Church.

For the past several years, our ecumenical Good Friday services have contained a number of short sermons by ministers of the community. While we pastors often work with each other on community projects, Good Friday is one of the few chances we have, during the year, to hear one another preach.

John did not disappoint. In his sermon, he referred to a statue in his church's Memorial Garden that depicts Mary holding the Christ child. That, in itself, is not unusual; there are countless images of Madonna and child. Yet, as he explained, this one is different. This statue does not depict Mary cradling the infant in her arms, lovingly gazing into his eyes. No, she is holding the young Jesus out, with his back to her. His arms are stretched wide, as though to embrace some unknown person to whom Mary is handing him.

John made the point that this is very much what happens on Good Friday. Mary is holding Jesus out to the world, offering him up. His arms are outstretched, as they were on the cross. For a mother to hold her infant out in such a way, she must trust the person to whom she is handing him. Similarly, God entrusted Jesus to the human race – and we killed him. Yet, having been raised from the dead, he lives on, and his open-armed embrace continues to be there for us.

Today is Holy Saturday. In the Presbyterian Church, it's a day when not much happens – a sort of in-between day, bookended by the solemnity of Maundy Thursday and Good Friday on the one hand, and the jubilation of Easter on the other. In terms of the gospel story, it's the day Jesus' body rested in the tomb.

Today, I'm in the midst of writing my Easter sermon. Last year, at this time, I was reeling from the side effects of a chemo treatment I'd had a few days before. I knew I'd never make it to Easter services the next day, let alone lead them. Here's what I wrote, back then, in this blog:

"My whole life, these days, is a Holy Saturday. Laid low by the weakness and malaise of chemotherapy, I am in a waiting mode – waiting to get better. Tomorrow morning, as I listen to the church bells from across the street and perhaps glimpse the comings and goings of worshipers through the curtains, I will seek to celebrate the resurrection vicariously, in my own way, apart from the worshiping community."

My situation, this year, is of course very different. I'm grateful for that, and grateful to be writing a sermon. Easter is the day preachers live for, each year: the day when we have our best opportunity to share the good news that's at the heart of Christian faith.

It's good to be back.

April 4, 2007 - Things Not To Say To a Cancer Patient

I discovered a new cancer blog the other day (new to me, anyway). On it, I found a list of things not to say to a cancer patient. The author of the blog, a lung and brain cancer survivor named Tom Clarke, compiled the list by recalling actual comments made to him or his wife, by well-meaning but clueless people (it’s from his October 3, 2006 posting). Tom’s not shy about revealing exactly what he thinks of such comments. I’ve edited his remarks for language, since Tom’s jargon is a bit too, er, colorful for this blog:

1. "It's God's Will," or its close cousin "everything happens for a reason." These seem to be favorites amongst the holy roller crowd. Response: Did you ever consider that God missed and tagged the wrong [bleeping] guy? Is that so inconceivable with five billion people roaming the planet?...

2. "You have to take it one day at a time." I decided to take it three days at a time, thank you very much, you dope addled AA/NA freak.

3. "God never gives you more than you can handle." Oh yeah, why are there so many suicides then? Also see #1 above.

4. "My ___________ (mom, sister, grandparent, friend, etc.) had ____________ cancer and he/she decided to undergo radiation/chemo and is just fine now." Well, that solves it. I guess I'll just depend on your mom's (sister's, etc.) judgment on what I should do for my more serious and completely different cancer...

5. Offers to help. Don't make them unless you intend to follow through. I actually had one friend who called me about 45 minutes before I was scheduled for an oncologist appointment (which he had agreed to take me to 2 weeks earlier) and asked me to reschedule the appointment because he was busy at work. "Uh, yeah, I'll get right on that. It's not like time is of the essence or anything." Offer to do what you can, get me out of the house for a lunch or a beer, but don't offer to do things (like mow my lawn, for another example) if you're not going to follow through. It makes more work for me and my family than had you not offered in the first place.

6. "You don't look like you have cancer." There's a special circle of Hell for these people (and yet you know that they have never heard of, much less read Dante's Inferno). What exactly am I supposed to look like? The less offensive version of this is "you look good."... Ask how I'm feeling first, and then comment if the situation warrants it.

7 . "Come on down." Well, people don't really say this, but I swear every waiting room in America has that [bleeping] The Price Is Right blaring at about 120 decibels even though no one is watching it...

So, now that Tom’s told us what he thinks you shouldn’t say to a cancer patient, what do you say? (Blog readers, want to weigh in on this? Click on the “Comments” link below, and let us know what you’ve found helpful.)

I don’t agree with him on all of these. I don’t have the same reaction, for example, to “You’re looking good.” That’s one I seem to get a lot, as I’m greeting people at the church door. (I suppose it’s a natural thing for people to say, after they’ve just spent an hour or so looking at me, and remembering how I used to look when I had no hair.)

I guess I’d have two suggestions – not so much specific things to say, but more a style of how to say them...

First, don’t concentrate on what you ought to say. That’s where pious platitudes come from, like “Just take it one day at a time,” or “God never gives us more than we can handle.” These may work for you, but they may not be what the person with cancer needs to hear.

Second, speak from the heart. To a newly diagnosed person, even a simple “I’m so sorry” means a great deal.

Third, just be there. Woody Allen said 80% of life is showing up. Your caring presence means a lot, even if you don’t know what to say. (Actually, “I don’t know what to say” isn’t such a bad thing to say.)

April 3, 2007 - Lies, Damned Lies and Statistics

The Elizabeth Edwards and Tony Snow stories seem to be setting off an interesting debate, indeed. They’ve certainly catapulted cancer into the national consciousness.

A friend just sent me a link to a Washington Post article by one of that paper’s staff writers, David Brown: “For Cancer Patients, A Struggle to Prolong Hope as Well as Life.” Brown takes issue with some claims that have been made about Tony and Elizabeth’s respective prognoses.

President Bush said his press secretary “is not going to let this whip him.” John Edwards said of his wife that her disease – while incurable – may, in fact, be more like diabetes, in that it can successfully be managed for a long time. Brown questions the veracity of such comments, based on survival statistics for relapsed colon and breast cancer patients. When it comes to long-term survival, he claims, the odds are stacked heavily against both Tony and Elizabeth – although he also admits that statistics for relapsed patients are harder to find, in online and other reference sources, than statistics for patients receiving front-line treatments.

He seems to hint that the relative obscurity of the statistics is the result of some kind of dark cover-up on the part of modern medicine – that oncologists know perfectly well that most of their relapsed patients aren’t long for this world, but just aren’t telling. He goes on to cite the results of a research study that suggests doctors tend to be overly optimistic about their patients’ chances, but that patients are even more so: “A 2001 study asked 71 patients awaiting stem-cell transplants about their chances of dying from the treatment. On average they guessed 21 percent. Their doctors said 33 percent. Actual mortality was 42 percent.”

The diabetes analogy John Edwards used is a line I’ve actually used about my own prognosis. I got it from my own doctor, who deployed it just after saying – of recent, encouraging advances in Non-Hodgkin Lymphoma treatment – “If you had to choose a form of cancer to have, this is the one to choose.” So, Brown’s article hit me in the gut, in a very personal way (though I do need to remind myself that he’s talking about relapsed patients, a club to which I do not belong).

Brown’s article made me mad, in a way that few other things written about cancer have. It made me mad on behalf of Elizabeth and Tony, and anybody else who’s dealing with advanced cancer treatments. Using the image of a bell curve, he observes that a relatively small number of relapsed cancer patients are in the narrow “tail” of the curve, that stretches out to the farthest limits of the timeline. Most patients want to visualize themselves as being in that part of the curve, he says, and their doctors want to see them there, too.

I guess what bothers me about Brown’s article is that he sees that as a problem. Given the choice between a doctor who - consciously or unconsciously - bumps my chances of survival up a little, and another who reads the statistical averages like they’re a road map of Death Valley, I’ll go for the cockeyed optimist every time. (I’d have a sneaking suspicion that the pessimistic practitioner could give up on me too soon.)

Nineteenth-century British Prime Minister Benjamin Disraeli is noted for saying, “There are lies, damned lies and statistics” (sometimes people attribute this remark to Mark Twain, but Twain himself says he’s quoting Disraeli). I have a feeling that Brown’s use of statistics belongs to the “damned lies” variety. Sure, maybe his numbers are based on reliable averages, but the thing about averages is they’re just that: average.

Let’s say there are three relapsed patients sitting in a doctor’s waiting room. All three have the same form of cancer. Let’s also say that, for this form of cancer, statistics predict that only one relapsed patient out of three will live more than a year. As each of those patients, in turn, walks into the examining room, is the doctor going to prescribe a cutting-edge new therapy for only one of them? Of course not! The doctor doesn’t know which one of the three is going to make it – and, in fact, it’s possible that all three will do well (three being a rather small statistical sample).

By the same token, when President Bush approaches a microphone, he’s not likely to say, “Too bad about Tony, we’re going to miss him.” No, Tony is his friend, so he’s going to call him a fighter. The same is true of John Edwards, who’s not going to scrimp on his tough talk about standing side-by-side with his wife and doing whatever’s necessary.

Back in college, I wrote a senior thesis on Ludwig Wittgen- stein's philosophy of language. One thing that impressed me about this Austrian thinker – specifically, his later writings – was his remarkably flexible, even playful understanding of language and the ways we actually use it. Wittgenstein talks of “language games,” that each have their own rules. In interpreting the meaning of things people say, it’s hard to generalize from one game to the next - and, when we do, we tend to get into trouble.

When President Bush and John Edwards are speaking pugnacious words about the prospects of people they care about, they’re not reading papers at a medical convention. They’re speaking words of love – and love has no place on a bell curve, none whatsoever.

April 2, 2007 - Profit Center

“Have you ever wondered why hospitals offer free cancer screening tests?” asks Shannon Brownlee, in an op-ed piece in yesterday’s New York Times. “Hospitals would like you to think they are doing this out of the goodness of their hearts, that free cancer screening is a public service intended solely to improve your health. But there may be another motive at work here: providing free screening brings in new cancer patients, and cancer generates profits."

Now there’s a curious thought – that I’m a potential source of profits for my local hospital. Recently, as part of my volunteer work as a member of the Community Advisory Committee of Ocean Medical Center, I’ve been part of some discussions about how to raise the public profile of a program the hospital provides, called “Oncology Navigators.” These Navigators are hospital employees who speak on the phone to cancer patients, providing them with general information about the disease and connecting them with various medical services. The one experience I had with one of the Navigators was when I was beginning my physical therapy. I called her, on Dr. Lerner’s recommendation, and she made the connection for me with Life Fitness (a hospital affiliate), where I received my therapy. I thought she was very helpful.

I have no objection to this set-up – in fact, I think it’s to be applauded – because it’s important to refer people to hospitals for auxiliary services. Hospitals, by law, must provide a lot of charity care for uninsured people, at a financial loss. So, if they can earn a little extra scratch through “profit centers,” then that’s a good thing for us all. I don’t think hospitals need to apologize for having auxiliary enterprises. It’s a matter of simple survival, in the constantly-changing, Kafkaesque world of health-care financing.

Now that I think about it, I realize that a great deal of my own cancer testing and treatment has been provided outside the hospital setting, by for-profit business concerns. Dr. Lerner’s office, where I received tens of thousands of dollars worth of chemotherapy drugs, is a for-profit operation. So is Atlantic Medical Imaging, where I’ve received my most recent scans (I would have preferred to go to the hospital for these, myself, but they don’t yet have a PET/CT fusion machine).

Of course, questions could be raised about hospitals’ non-profit status, as well. Even the smallest community hospital is a multi-million dollar concern, and is often the largest employer in its community. Some hospital staff members, particularly senior executives, are handsomely compensated. True, hospitals don’t have stockholders, and are governed by volunteer boards of trustees, but still there are ways in which the boundary line between profit and non-profit seems to have gotten a little fuzzy.

“Could it be,” wonders Ms. Brownlee, “that at least some of the $100 billion we spend each year on detecting and treating this disease is used not to improve the health of patients, but rather to prop up hospital finances?” Well, I’m not so sure I’d be as ready as she is to separate the functioning of a hospital from “improving the health of patients.” Isn’t that a hospital’s principal mission, in the first place?

Her concern, though, is that some hospitals may be too aggressive in steering patients towards costly therapies, because they bring in more money. Inasmuch as doctors have control over treatment decisions, and doctors aren’t generally hospital employees – rather, they’re independent professionals who are credentialed to serve on the hospital’s “medical staff” – I think there are adequate checks and balances. Actually, I think the temptations may be greater in the for-profit clinic setting, in which doctors are prescribing medications, then turning around and acting as a pharmacy, selling those same medications to patients.

Back when Washington Post reporters Bob Woodward and Carl Bernstein cracked open the Nixon White House, their rule of thumb was to “follow the money” – the assumption being that greed is a consistent and predictable motivator of human behavior. Is this also true in the world of medicine? Shannon Brownlee seems to think so.

I think the jury’s still out, on that one.

As for me, I’d prefer to think that my doctors, as well as the administrators of the local hospital, don’t hear “ka-ching” when I walk through the door. Medicine – that profession that connects with human beings on the most intimate level – is meant to operate from higher motives.