Saturday, September 29, 2007

September 29, 2007 - Weaving the Safety Net

Last night a friend called me, to talk about her father, whose lung cancer has relapsed. She was anxious and upset, nearly beside herself with worry. For the first time she’d heard the dreaded words, “Stage IV.”

What could I do? What could I say? I’m fresh out of magic words that can make everything all right.

I did the only thing I could do. I listened. Every once in a while, I threw in some small piece of advice about navigating the cancer-care maze: the importance of sitting down with the whole family and talking frankly about the situation, the need to make sure the right-hand doctor knows what the left-hand doctor is doing, the value – nay, the necessity – of getting a second opinion (preferably from a specialist at an NCI-accredited Comprehensive Cancer Center).

By the end of the call, she seemed to feel much calmer. I didn’t do very much, really, other than listen. But that was enough. It was the needful thing.

Certain experiences in life are better done on our own: pulling on our clothes in the morning, ordering from a menu, deciding what book to bring along to read on a plane. Facing cancer isn’t one of them. No, when a cancer diagnosis looms, the first thing to do is assemble a posse.

Reynolds Price, poet and novelist, was a well-known figure in the literary world before he got cancer, and started writing about it. A Whole New Life: An Illness and a Healing tells the story of his treatment, mostly by surgery and radiation, for life-threatening spinal cancer. Never a man of overt religious faith, but always one of deep religious sensibility, he discovered a web of support he never knew was there: people who found their way to him at his darkest moments, people who prayed for him when he barely believed in prayer. Here’s something he wrote:

“One of the strongest and most ironic assurances came from a woman I hadn’t seen for years, who’d herself been placed in an isolation chamber for several days shortly before a whole capsule of radium was implanted in her body to bombard a pelvic cancer. She phoned me on a dismally low Sunday morning and, with no preface, calmly said, ‘I’ve called to tell you you’re not going to die of this cancer.’ Then she quoted the famous talisman lines from Psalm 91 that so many soldiers have taken to war,

‘He shall give his angels charge over thee;
to keep thee in all thy ways.’

Soon she was dead but her word on me is still in force.

At moments of exhaustion those unsought assurances could ring a little crazily. I well understood that the vast majority of human prayers get No for an answer, if any answer at all. I knew that my threatened life was surely not an exception to that dark rule.... But as things sped downward in my mind and body that summer and fall, and a blank wall was all the end I could see, those promises from friends of unquestioned sanity carried more weight with my battered mind than most other messages. Bad as I often felt, they seemed oddly credible. And I’m still not convinced I chose to trust them only because I needed to. Even now as I recall each one and the moment of its arrival, I can hear its battlefield-bulletin prose as welcome and trusty; and I take great care not to make empty promises to troubled friends unless, as I very rarely do, I have a firm sense of their ongoing luck.”
(Reynolds Price, A Whole New Life: An Illness and a Healing – Plume, 1982, pp. 64-65.)

It was a pretty gutsy thing for that woman to do, phoning her friend and pronouncing medical absolution over him, when she wasn’t even a doctor. I don’t think I would be so bold. Yet, somehow, her preposterous prophecy seemed to make all the difference for Reynolds. Along with other good friends, she slid under him when he was falling, and caught him.

A weaver, creating a blanket, sends the loom’s shuttle sliding back and forth, again and again, crafting a web of gossamer thread that has far more strength than any one cord alone. This is what we do for each other, when the touch of cancer’s icy, skeleton finger would chill us to the bone. We wrap one another in listening, and, more rarely, speaking. We stand at the end of a frightful chasm and halloo our prayers into the darkness, then together await the echo.

Thank God we are not alone.

Thursday, September 27, 2007

September 27, 2007 - Looking Goliath in the Eye

I realize I’ve been writing a lot, recently, about the health-care funding debate in this country, but that’s partly been because of the long gaps between medical appointments that lead to lots of “slow news days” with respect to my own health situation. (By the way, there’s going to be a further delay before I hear from the Tumor Board at Hackensack University Medical Center; they’d like me to travel up there next Thursday for a consultation with a Dr. Feldman, a member of the Lymphoma Department, before the Tumor Board makes their decision.)

I was concerned about the plight of the uninsured even before I got sick, but the ever-growing flood of window envelopes pouring through my mailbox has led me to feel even greater compassion for those who keep getting hit with budget-busting medical bills and have no way to pay them. Furthermore, my prior experiences of living in England and Scotland have given me a generally favorable opinion of single-payer, national health programs. I’m convinced that most of the tiresome screed decrying “socialized medicine” that we Americans hear so often is pure invention, promulgated by panicky people with no firsthand experience of how well the European and Canadian systems actually work for most citizens.

So, there it is. My cards are on the table. I believe our health-care funding system has become so bloated and dysfunctional that it's beyond any kind of tinkering. It needs to be rebuilt from the ground up. (Please note that I'm talking about our health-care funding system – the creaky, complex medical-insurance system that puts the needs of stockholders above those of policyholders, and wastes billions of dollars on pointless paper-pushing that could otherwise be spent on patient care. Against all odds, we still somehow have a health-care system we can be proud of - or, at least, that the insured among us can be proud of. The quality of care available to most insured Americans is still among the highest in the world – as is also true of national-health-insurance countries like Britain, France and Canada, that also manage the feat of caring for all their citizenry.)

Given that presupposition of mine, it will come as no surprise to hear that I was terrifically impressed by a recent essay by journalist Barbara Ehrenreich. She's written some interesting things in the past: most notably a provocative book, Nickel and Dimed: On (Not) Getting By in America (Holt, 2002). In that book, she chronicled her experiences working for several months at a time at minimum-wage jobs, trying to live on that salary alone. She had to work two jobs, seven days a week, and still nearly ended up in a homeless shelter. Her conclusion? In our economy, minimum wage is not a living wage – not even close.

In a September 20th blog entry, We Have Seen the Enemy – And Sur- rendered, Ehrenreich suggests that one of the most fearsome enemies the American people are facing today is the multi-billion-dollar medical-insurance industry. So cowed are all the presidential candidates by the bare-knuckle power of this industry (with the sole exception, she says, of the rarely-heeded Dennis Kucinich), that no one has come close to suggesting total, paradigm-busting reform, along the lines of universal health care. The most any of them are suggesting is baby steps.

Big Insurance is a mammoth industry indeed. Citing economist Paul Krugman, Ehrenreich points out that this industry employs "two to three million people just to turn down claims."

Our spiraling medical bills are not only paying all those pointless salaries ("pointless" because they benefit stockholders at the expense of policyholders). They're also indirectly funding both sides of an ongoing, ever-escalating war between doctors and insurers. The insurers get tougher, rejecting more claims. The doctors employ specialized office workers to circumvent the insurers' rejections. The insurers respond in kind, continually increasing their workforce of abominable no-men (and women). And on and on. Caught in the crossfire, uninsured and under-insured patients become "collateral damage."

Unlike other industries, which grow by producing more, the way the medical-insurance industry garners profits is exceedingly odd. It grows by turning potential customers away:

"The private health insurance industry is not big because it relentlessly seeks out new customers. Unlike any other industry, this one grows by rejecting customers. No matter how shabby you look, Cartier, Lexus, or Nordstrom's will happily take your money. Not Aetna. If you have a prior conviction – excuse me, a pre-existing condition – it doesn't want your business. Private health insurance is only for people who aren't likely to ever get sick. In fact, why call it ‘insurance,' which normally embodies the notion of risk-sharing? This is extortion.

Think of the damage. An estimated 18,000 Americans die every year because they can't afford or can't qualify for health insurance. That's the 9/11 carnage multiplied by three - every year. Not to mention all the people who are stuck in jobs they hate because they don't dare lose their current insurance.

Saddam Hussein never killed 18,000 Americans or anything close; nor did the U.S.S.R. Yet we faced down those ‘enemies' with huge patriotic bluster, vast military expenditures, and, in the case of Saddam, armed intervention. So why does the U.S. soil its pants and cower in fear when confronted with the insurance industry?"

I'd encourage you to take a look at the entire essay. If nothing else, it will give you something to think about.

Wednesday, September 26, 2007

September 25, 2007 - Insurance Denied, Assurance Supplied

This morning I receive a phone call from Cindy, my new case manager from CIGNA Care Allies (last week, they moved my case from their general oncology division to their stem-cell transplant division, which necessitated a new case manager). She gets right to the point, informing me that a physician on their staff, reviewing my case, has denied Hackensack University Medical Center’s request for pre-approval of funding for donor-compatibility testing of my two brothers.

This denial, she’s quick to explain, is just for the donor testing. The reason their doctor gave is that I’ve not yet been approved for a transplant, so the testing of Jim and Dave is premature. Cindy will send me paperwork I can use to appeal this decision, if I wish. This is the type of call she hates to make, she adds (I can sympathize with her on that, on a personal level, but it doesn’t bring me a whole lot of comfort).

This decision doesn’t make a whole lot of sense to me, I explain. Isn’t the information about sibling donors essential to deciding whether or not a stem-cell transplant is the way to go? There’s also the element of time. Because sibling donor testing – and a subsequent search of the national donor registry, should that prove futile – can take a while, I thought the point was to get as much of this preliminary work out of the way as possible, in case future circumstances should make a transplant suddenly urgent. The insurance company evidently doesn’t operate that way. If it’s not urgent, it doesn’t matter how important it is.

Dr. Donato told me Hackensack offers a “Family and Friends Program,” a subsidized program that reduces the cost of donor-compatibility testing for patients whose insurance doesn’t cover this. I believe she said the subsidized cost was $150 per potential donor, which I would need to pay out of pocket. I didn’t pay close attention to her at the time, because I was assuming Highmark Blue Cross/Blue Shield would step up to the plate, but now I see why she mentioned it. Evidently, this sort of denial happens often enough that the hospital has developed its own work-around arrangement.

This is the first time, since I got sick, that any insurance claim of mine has been denied. I suppose I should count myself lucky that I’ve gone this long without getting the ol’ thumbs-down. Thanks to the Family and Friends Program, it’s not that large an amount of money; I’ll probably just pay for it myself, then submit an appeal and hope for the best. (I’d probably only have to pay for Dave’s testing, anyway, since Jim is evidently already in the national registry.)

Cindy’s call leaves me with a strange, empty feeling: more betrayal than anger. I don’t feel it as being directed towards her (she’s just the messenger), but rather towards the nameless doctor on the insurance company’s payroll who wields the rubber stamp. Who is this guy, anyway, and what makes him think he knows more than Dr. Donato, a nationally-regarded stem-cell transplant specialist?

I put all this out of my mind, reminding myself that I haven’t even heard from HUMC’s Tumor Board yet (I’m supposed to call Brenda tomorrow, to find out their recommendation).

This evening, I attend a meeting of Monmouth Presbytery – the regional governing body of the Presbyterian Church (U.S.A.) of which I’m a member. In the past year or so, the presbytery has been meeting less frequently, about four times a year. Some of my fellow presbyters I haven’t seen in quite some time. I swiftly lose count of the number of people who come up to me, shake my hand, and ask, “How are you?” – with emphasis on the “are.”

It’s not just a casual “How ya doin?” There’s a genuine desire to hear some details. I know most of my minister colleagues in the presbytery, but a good many of these people who come up to me with words of support are elders (elected lay leaders) from other churches – some of whose faces I recognize, but whose names don’t come readily to mind. I’m been on their church’s prayer list, they explain, and they’ve been concerned about me.

It’s a very different experience, this evening, than I had with my insurance company this morning – although, of course, the circumstances are quite different. In both cases, there are people I don’t know who have been considering my medical situation. Some of those people responded by wielding the dreaded rubber stamp. Others joined hands in prayer.

Note to self: Never forget to be thankful for the church of Jesus Christ, which has a way of coming through when you need it.

Monday, September 24, 2007

September 24, 2007 - Hurry Up and Wait

Last night I watched the first part of Ken Burns’ new documentary series, The War – his take on World War 2. It was, as I’ve come to expect from Burns, gripping. One of the people interviewed, a woman from Alabama whose brother went to war, kept saying over and over how suddenly all their lives changed, the day they heard, over the crackling radio speaker, the news of Pearl Harbor. She seems a bit bewildered by the rapidity of the change, even to this day. Anyone with an eye to the political situation in Europe and East Asia in the late 1930s could have predicted that global conflagration was in the offing, but Americans were oddly insular. Our nation was in denial that the rise of the Nazi, Italian Fascist and Japanese war machines would ever affect us.

Lots of people are fond of describing patients’ experience of cancer in military terms. Turn to the obituaries any day of the week, and you’re likely to find the words “after a long battle with cancer” somewhere on that page. I’m not fond of such language, as I’ve said several times upstream – although I’ll admit that the shock of a cancer diagnosis, and the rapid changes it brings about, is not unlike receiving the news that formations of Zeroes have been sighted over Pearl Harbor.

Yet, it just doesn’t make sense, biologically speaking, to think of cancer as an outside invader. Our own bodies make the cancer. The cancer is us. If we’re going to use the military metaphor at all, I suppose we’ve got to describe it as a civil war – a protracted, brother-against-brother slugfest – rather than some pious crusade against a foreign enemy.

Even when we’re healthy, our bodies are perpetual killing fields. Cells come into being and die every hour, every minute, only to be replaced by other cells. That’s the natural order. It’s when a cell doesn’t die when it’s supposed to that the trouble begins. Maybe we ought to think of cancer cells as legions of the undead, marching dumbly onward.

I’m no fan of horror films, but I do know that one thing that makes for a good one is how well the director manages the viewers’ experience of waiting. There’s a delicious experience of foreboding that’s dear to the hearts of true horror fans. A good director knows that, once the swamp creature or zombie or pissed-off dinosaur finally shows up, that’s good for only a few minutes’ worth of celluloid. You could never sustain that level of terror throughout a full-length film. So, a great many minutes of horror movies are dedicated to spinning out that experience of waiting: knowing the evil adversary is coming, but not exactly when.

You can probably sense where I’m going with this. Someone has memorably described an ordinary soldier’s experience of war as long days of boredom punctuated by moments of absolute terror. Burns’ footage of Marines undergoing training and leaning on the rail of the troopships, then finding themselves in the fight of their lives in the pestilential jungles of Guadalcanal, is true to form.

I’ve noticed that members of the World War 2 generation are fond of the phrase, “Hurry up and wait.” It captures a reality they knew all too well: whether it was lining up for an army physical, queuing for a gas-ration card or playing endless rounds of penny-ante poker on a barracks footlocker.

In that respect, I suppose the military metaphor will serve for me as well. “Hurry up and wait”: I know a little better, now, what they mean.

Sunday, September 23, 2007

September 23, 2007 - Hospital Hospitality

It’s not only in Africa that the poor have difficulty obtaining cancer treatment. The same thing is happening, it seems, in the USA. Under newly revised Federal Medicaid guidelines, the government will no longer reimburse hospitals for chemotherapy provided to illegal immigrants (Sarah Kershaw, “U.S. Rule Limits Emergency Care for Immigrants,” New York Times, September 22, 2007).

Some may find it surprising that our government provides any medical reimbursement at all for illegals. Yet, Medicaid guidelines evidently contain a limited provision that underwrites the cost of emergency treatment for non-citizens. What’s happened is that the Federal government’s regulation-writers have now decided that chemotherapy, by its very nature, is never an emergency. Given the high cost of most forms of chemo, I can understand why government bean-counters would be inclined to make such a declaration. But, I still don't like it.

I’m glad our country covers the cost of emergency-room treatment, at least, for indigent people within our borders. It’s the humane thing to do. The word “hospital” has its roots in “hospitality,” after all. If the government didn’t provide any reimbursement at all, then hospitals would undoubtedly extend some level of care to illegal immigrants anyway, then write the expense off as a loss. Eventually – at least in the case of the most financially-stressed urban hospitals – some of that expense would find its way back to the government, in the form of subsidies that keep hospitals from going bankrupt and closing their doors.

I know a minister who works with Hispanic people in our local area. He’s escorted quite a number of them to the hospital, when they needed treatment, serving as interpreter and general go-between. Those who are here illegally often avoid seeking medical care, sometimes endangering their health and even their lives – even though the local hospitals aren’t particularly interested in reporting people to the INS. (I’m not sure they even can, under HIPAA privacy regulations.)

My colleague told one story about a young man who had broken his arm. He surely couldn’t go without treatment for something like that, nor could he travel back home to Mexico in pain. I presume Medicaid picked up most of the cost, although perhaps he paid some of it himself (he is employed, after all, which is why he’s in this country in the first place). I’m glad Medicaid is there to cover cases like his.

In countries with universal health-care coverage, like Britain and Canada, emergency treatment is often provided to visitors free of charge. I found this to be true when I was in Scotland, some years back (it was just treatment for a fever, but I was surprised they wouldn’t let me pay). Another colleague of mine had to have emergency surgery recently, while on vacation in Canada. I’ve heard he was very impressed with the quick and efficient response of the Canadian health-care system (whether the Canadians will subsequently try to collect from his medical-insurance company, I have no idea).

Yet, what about chemotherapy? As the Times article points out, there’s a considerable gray area here. Some doctors evidently consider certain forms of chemotherapy to be an emergency treatment, or a palliative treatment in the case of pain. There are some cases when, if cancer is left untreated, it will soon become a true emergency, anyway.

Illegal immigrants who come down with cancer are in an unenviable position. Depending on what country they come from, treatment may not be available back home at all. Here in this country, they face fears of deportation (however unfounded) if they show their face in an emergency room, and even then, they’ll likely receive only the bare minimum of treatment. From here on in, that treatment will only include chemotherapy if the hospital is willing to eat the cost, or if the State government is willing to go solo and cover the expense, without Federal subsidy.

All this makes me feel fortunate, indeed, to have medical insurance, and – as a citizen – to have the minimal Medicaid safety net underneath me, should I ever lose my coverage and become indigent.

How is that I’m so fortunate as to live here, to be gainfully employed, and to receive some of the best cancer treatment available, while sisters and brothers from other lands must go without? That’s a question for another day. Yet, I’m grateful, all the same.

Thursday, September 20, 2007

September 20, 2007 - The Politics of Pain

Recently I ran across a news article that was a real eye-opener for me. (Donald G. McNeil, Jr., “Drugs Banned, Many of World’s Poor Suffer in Pain,” New York Times, September 10, 2007.) We’ve all become overwhelmed with statistics about how widespread poverty is in our world, and how inequitably wealth is distributed. I don’t mean to be cavalier about it, but it’s a simple fact: you can only read so many accounts of millions of refugees living under canvas in displaced-persons camps before your eyes glaze over with the sheer enormity of it all.

A week and a half ago, the New York Times ran a feature story that coalesced this universe of statistics into a single point: the story of one poor cancer patient who’s living in pain. More than the story, it’s a photo of her that speaks the proverbial thousand words. It depicts her pursing her lips and wrinkling her forehead, as she endures unspeakable agony.

Let me share a few insights from the article that made an impression on me.

The woman’s name is Zainabu Sesay, and she lives in the tiny nation of Sierra Leone, in West Africa. She’s got breast cancer – a case so advanced that it displays symptoms rarely seen in Western hospitals. Even the poorest of the poor, in America, would not be permitted to go so long without treatment. Her tumor, says the Times article, has broken through the skin of her breast, and looks “like a putrid head of cauliflower weeping small amounts of blood at its edges.” It's long past being curable, or even operable.

Sierra Leone is not a good place to be a cancer patient. There’s not a single CT scanner in the entire country. Only one private hospital offers chemotherapy treatments. Sharecroppers like Zainabu and her husband couldn’t dream of affording even one chemo treatment (as though one treatment could make a difference, anyway). For most people in this benighted land, a cancer diagnosis of any kind is a death sentence.

A kindly nurse is attending to her. All he can do is change her dressing, sprinkle antibiotic powder on the skin infection and give her Tylenol and tramadol – a medication related to codeine, that’s only 10 percent as effective as morphine. That, and offer her some encouraging words.

The lack of curative treatment is bad enough, but Zainabu also suffers unremitting pain, because morphine-based pain-killers are all but unknown in her country. In part, this is a decision of her country’s government. Fearing the impact of drug abuse on a country already devastated by years of civil war, they have enacted a total import ban on all opiates. Yet, the shortage also has to do with simple economics. Morphine is a relatively cheap medication, but in an economy like Sierra Leone’s, it would still be beyond the reach of nearly everyone’s ability to pay.

Sierra Leone is not alone. Here are some telling statistics: “Six countries – the United States, Canada, France, Germany, Britain and Australia – consume 79 percent of the world’s morphine, according to a 2005 estimate. The poor and middle-income countries where 80 percent of the world’s people live consumed only about 6 percent.”

Do the math: 80 percent of the world’s people get just 6 percent of the world’s narcotics. That means a whole lot of cancer patients are living with levels of pain unimaginable to anyone in our culture.

I think back to my minor surgeries, and how worried I felt about pain of a few seconds’ duration, that might break through the “twilight sedation” I had been given. Compare that to Zainabu Sesay’s unceasing agony – well, there’s no comparison. None whatsoever.

The hospice nurse speaks to her in the local pidgin dialect, a hybrid of English and tribal languages left behind by the English colonists who formed this nation as a place to settle repatriated slaves. He suggests that Zainabu let a neighbor plait her hair for her - just to make her feel better - but she declines.

“It’s necessary for to cope,” he says. “For to strive for be happy.”

“I ‘fraid for my life,” she says.

“Are you ‘fraid for die?”

“No, I not ‘fraid. I ready.”

“So what is your relationship to God? You good with God?”

“I pray me one.”

Prayer is about all she’s got. Effective medicine is an impossible dream.

Wednesday, September 19, 2007

September 19, 2007 - My Well-Traveled Slides

Today I get a call from Angelica, who works for the stem-cell transplant program at Hackensack University Medical Center. I’d expected to hear the results of the Tumor Board’s review of my case, which was supposed to take place this morning. As it turns out, they’ve had a hard time locating the pathology slides from my most recent needle biopsy, and have postponed consideration of my case until next Wednesday.

Someone from the Hackensack staff called Ocean Medical Center, Angelica explains, only to find that the slides were still at Memorial Sloan-Kettering (Dr. Portlock’s staff had told me they were going to send them right back to OMC, but evidently they didn’t). The person then called the MSKCC staff, who located the slides in their archives and lobbed them across the Hudson.

“Hackensack’s a large hospital,” Angelica continued, apologetically, “and sometimes it’s hard to find things here.” By the time they'd located my slides, in the mailroom or wherever they'd landed, there wasn’t enough time for the pathologist to review them prior to the Tumor Board’s meeting. The Board will meet again next Wednesday morning, to consider my case.

The delay’s not a big deal, medically speaking. We’re in a slow-motion, “watch-and-wait” mode, after all. That’s not to say I haven’t been anxious to hear the results. But it’s OK, I can wait another week.

This story highlights how important medical records are to cancer patients. The last time I watched Dr. Lerner open my file, it had grown to 3 or 4 inches in thickness – all that paper, in less than two years! Everywhere I go, in my peripatetic quest for wellness, I seem to trail scan films, data CDs and microscope slides in my wake. I’ve tried to pick up after myself, making sure my primary records all end up at Ocean Medical Center, eventually, but that’s not always up to me. I’m just glad the Hackensack people located them eventually. I wouldn’t want to repeat a biopsy because slides have gone missing!

When most of us think of medical decision-making, we tend to picture a wise doctor with a stethoscope, poking and prodding and questioning a patient, then making some carefully reasoned but intuitive judgment. I’m sure some diagnosis still happens in that old-fashioned way, but you don’t have to venture very deeply into lymphomaworld before you discover the hands-on approach has been largely replaced by quantitative analysis. As the numbers are crunched, it’s not typically one individual leaping to a brilliant, intuitive conclusion. The work is done by interdisciplinary teams, weighing columns of data against established protocols.

Decisions are being made about my treatment plan by people I’ve never met, and probably never will meet – pathologists peering through microscopes, Dr. Donato’s unnamed colleagues on the Tumor Board, other specialists who may be called upon to review particular details.

At least the Hackensack staff seems pretty good at keeping me informed. I appreciate that.

Monday, September 17, 2007

September 16, 2007 - A Hole in the Roof

This morning I’ve got a guest-preaching gig at the Morning Star Presbyterian Church of Bayville, New Jersey. This is a first for me. Never once, in a quarter-century of ministry, has anybody asked for a rerun of one of my sermons.

The sermon is one I preached for Morning Star ten years ago, at their chartering service, when they were formally established as a congregation. A few months ago, I was surprised and pleased to learn from my friend, Myrlene, their pastor, that my sermon of ten years ago influenced the architecture of their new building (into which they’ve recently moved). That’s why they wanted me to repeat it – or, at least to preach on the same scripture passage.

I’ve had sermons result in all sorts of things, over the years: action, discussion, questions, jeers, slumber. Usually, the effects of sermons are pretty ephemeral. Never before have I had a sermon result in architecture.

The new Morning Star Church has a cupola, which sheds borrowed light into their worship space. Their roof is not literally open to the elements, of course, but symbolically it is. Several of their members insisted on this, I’m told.

The sermon is on Mark 2:1-12, the story of one of Jesus’ healings. This is the story that includes the rather colorful detail of a paralyzed man on a stretcher being lowered through a hole in the roof – this, in order to get around the crowds who are pressing so tightly around the house that no one can get in.

What I said to the people of Morning Star ten years ago – and repeat to them today – is that they need to keep a hole in the roof, so hurting people may continue to find a way in. Some long-established churches have a way of forgetting how to do that: focusing more on serving the needs of their members than welcoming those from outside their walls. New churches like Morning Star tend to be pretty good at this, but the more years of history a church accrues, the harder it becomes to maintain a missional outlook.

Today is a day I’ll always remember. One of the frustrations of ministry – particularly the wordsmithery that is preaching – is that tangible results are so hard to identify. Plenty of preachers have retired after many decades in the pulpit, wondering if they’ve made much of a difference. However long I remain healthy and am able to continue in ministry, I’ll always be able to recall that, in south-central New Jersey, there’s a church that keeps a symbolic hole in its roof, because of something I said to them back in 1997.

During the service, reminders of cancer are all around. Myrlene’s late husband, Ed – a minister who co-founded the church along with her – died several years ago of brain cancer. Candy, a church member who’s leading the intercessory prayers, asks for prayers for herself, as she’s recovering from breast-cancer surgery. Another woman asks for prayers, remembering the loss of several family members to multiple myeloma. A man tells how he's preparing for kidney surgery in a few weeks – again, a cancer diagnosis.

Most churches, in fact, are filled with people whom cancer has touched – either directly, or indirectly through family members and close friends. They are like the crowds pressed around Jesus, in that little house in Capernaum.

Let us always remember to make room for more!

Friday, September 14, 2007

September 13, 2007 - Graduate School of Cancer

Today, I speak on the phone with Kim, the Care Allies case manager who’s helping me make sense of my ever-more- complicated treatment options. I bring her up to date on what I learned at Hackensack a few days ago, and promise to call her back once I know the results of the Tumor Board’s deliberations.

I’m getting more impressed with Kim all the time. She really seems to know her stuff (no great surprise, because she told me she used to work as a liaison between a medical insurer and stem-cell transplant centers). My initial reaction, when she showed up on the scene, was to suspect my insurance company was looking for a way to deny me benefits. I can see, now, that the situation is more multi-faceted. Sure, Kim’s going to represent the insurance company’s interests, but she’s also going to be a great help to me in navigating this increasingly complex maze of treatment decisions. I’d never replace her advice with that of a physician’s, of course, but she’s going to be of great assistance in helping me understand how the system works. I feel like I’ve just been promoted from the School of Cancer to the Graduate School of Cancer, with Kim as my newly-appointed academic advisor.

The procedure we’re discussing is called an allogeneic nonmyeloblative peripheral blood stem-cell transplant. When you’ve said that, you’ve said a mouthful. You can call it “allogeneic nonmyeloblative peripheral blood stem-cell” if you want, but all its friends call it “mini.”

“Mini-transplant” refers to the fact that it doesn’t rely on massive doses of chemotherapy to blow the patient’s immune system to smithereens (and the cancer with it), before building it back up again from the donor’s cells. What a mini-transplant does is more like a Trojan Horse than an A-bomb. Even so, there’s nothing “mini” about the actual experience: neither for me, nor for the lucky person who may get to be my stem-cell donor.

I’ve been in touch with my brothers, Jim and Dave, who both renewed their offer to get tested as possible donors (Jim tells me he may not actually have to be tested, because he thinks he’s already in the National Marrow Donor Program registry – having signed up a few years ago when a co-worker was sick). I’m very grateful to both Jim and Dave for offering to do this for me, should it turn out I need it.

(I should emphasize, too, that a stem-cell transplant is but one of a number of treatment options I’m considering – we’re still at the talking stage.)

I’m especially grateful to them because I’m learning more about what it takes to be a stem-cell donor. Mostly gone – thankfully – are the days when the donation was accomplished through an arduous bone-marrow transplant. The newer, peripheral blood stem-cell transplant technology is a lot easier on the donors. It’s kind of like being a platelet donor or kidney-dialysis patient for a day or two: IV lines in either arm, and 4-6 hours of waiting while your blood is cycled through a machine that filters out the stem cells. Added to that are several, pre-donation days of testing, monitoring and receiving daily Neupogen shots, to build up the ol’ blood-cell count.

Although harvested stem cells can be frozen, Dr. Donato explained that the philosophy at Hackensack is to use them fresh, if at all possible. That means the procedure requires the donor to devote between one and two weeks to hanging around the transplant center. Those weeks can’t generally be scheduled at the donor’s convenience, but must integrate rather tightly with the recipient’s treatment schedule and the overall schedule of the center. (Hackensack, the sixth-largest transplant program in the country, does about 200 transplants a year, for treatments lasting a month or more – a formidable booking challenge.) It’s a great thing that Jim and Dave are both willing to clear their busy calendars to do this for me – yet, I’m even more in awe of the people who sign up to be on the national registry, making themselves ready to travel, on short notice, clear across the country if need be, baring their arms to people who will repeatedly stick them with needles – all this for the sake of a perfect stranger.

In the Graduate School of Cancer, one of my first lessons is learning how wonderfully accommodating people can be – Kim, Jim, Dave, those anonymous donors, and others – giving of themselves to help a fellow human being. Thank you!

Tuesday, September 11, 2007

September 11, 2007 - Checking Out a Stem-Cell Transplant

Today, I've got a lot to think about, after yesterday's consultation with Dr. Michele Donato, a stem-cell transplant specialist at Hackensack University Medical Center. Let me recall a few highlights...

I drive the one-and-a-half-hours to Hackensack on my own (Claire has to work). By now, I've pretty much nailed the new-patient routine: meticulously fill out all the forms they've sent you ahead of time; schlep along with you whatever test and scan results you can lay your hands on (both narrative reports and films/CDs); don't forget your insurance card and checkbook for the co-pay. Oh, and be sure to bring a good book to read – waiting-room times are directly proportional to the reputation of the medical center.

No surprises, here, on any of these points. When an aide finally calls my name, inviting me to come see Dr. Donato, she ushers me not into an examining room, but into the doctor's office. I sit across the desk from the doctor, as she asks me questions about things she’s read in my file. Off to one side are a couple other HUMC staff members: Brenda, a nurse who's a "transplant case manager"; and Angelica, another nurse who's a transplant-case-manager-in-training.

Some people say the day you realize you're getting old is the day you meet your new doctor who's younger than you. Well, if that's the case, then today I've entered serious geezerhood. It's not that Dr. Donato is a little younger than me. She's a lot younger than me. That must mean she knows her stuff. More power to her.

The doctor's upbeat about my prospects, remarking on (1) how young I am and (2) how healthy I am. This feels refreshing, because – after getting beaten up by cancer for the past couple of years – I haven't exactly been feeling either young or healthy. But – I’ve got to remember – I’m deep in lymphomaworld now. In the real world, I can't qualify for life insurance. In lymphomaworld, I am young and healthy. (I suppose a goodly portion of Dr. Donato’s patients are both elderly and more road-weary than I.)

She says I appear to be a good candidate for a stem-cell transplant. My ticket for admission is the fact that I've relapsed – and quickly, at that. The fact that my indolent lymphoma would recur at all is not surprising. It's the speed with which it's returned that gives her cause for concern.

Today's meeting is just a consultation. The real decision will be made by HUMC's Tumor Board: a committee composed of doctors from the lymphoma department, the stem-cell transplant department and the pathology department. They'll consider my case a week from Wednesday (I'm supposed to call Brenda that afternoon, and find out what went down).

Dr. Donato explains that a stem-cell transplant – as grueling as it is to undergo – is the treatment offering the highest success rate against indolent lymphoma. There's a 65% chance it would put me into long-term remission (with "long-term" defined as 5 years or more). That’s two out of three: pretty good odds, in lymphomaworld.

She says I'm not ready for a transplant just yet: ironically, because my cancer is back. The kind of transplant I need requires that I already be in remission. So, I’d first need to go back to Dr. Lerner and have him whack the cancer moles back into their holes. As part of their report, the Tumor Board will recommend some strategies for doing that.

The sort of transplant Dr. Donato is proposing is known as a "mini-transplant." (For a brief video on mini-transplants, click HERE.) It differs from some other transplant methods in that it's meant not so much to turn back active disease, as to prevent disease from recurring. Other transplants differ from a mini-transplant because they involve massive doses of chemotherapy. I would receive just a little bit of chemo before the transplant: four days of a relatively light regime.

The purpose of this medicine would not be to zap the cancer, but rather to suppress my own immune system – so it would be less likely to reject the donor's cells, once they've been injected into my bloodstream. While my immune system is suppressed, I'd be vulnerable to all kinds of infections - which is why I'd need to stay in the hospital. After my own, rejuvenated immune system bounces back, stoked by those donor cells, it would be my own, newly-produced cells that would go after the cancer. Not unlike Popeye, gobbling down his can of spinach.

In her 2005 book, Living With Lymphoma, Elizabeth Adler describes mini-transplants as "an intriguing new approach... In contrast to the standard stem cell transplant, the conditioning regimen doesn't attempt to obliterate your own marrow. Instead, you are given a milder regimen and repeated infusions of stem cells. That way, the new stem cells can gradually take over the job of producing blood cells from your own marrow.... At this point, reduced-intensity transplants are a promising approach to lymphoma therapy and appear to be well tolerated. It remains to be seen whether they are curative as well" (Johns Hopkins University Press, 2005, pp. 194-195).

That's the good news. The bad news is, the process takes a good bit longer than I'd thought. Previously, I was under the impression that transplant patients need to be in the hospital for about a month. Yes, Dr. Donato tells me, that's true: 3-4 weeks is the amount of time I'd be in. I'd go in a week before the transplant, undergo minor surgery to implant another port (different than the one I've already got), then receive my four days of chemo. After receiving the transplant, I'd stay in the hospital's special unit for 2-3 weeks longer, undergoing frequent blood tests to assess how the anti-rejection medications are working. The surprise, for me, is not the month in the hospital but the amount of down-time afterwards: I should expect to be away from work for a total of 3-4 months, says she. It would take that long for me to build up my strength, afterwards. Brenda adds that most stem-cell transplant patients have to go on disability, for at least part of that time.

So, assuming I decide to go through with this, when would all this happen? No clear answer emerges today. I've got to wait for the Tumor Board's decision, then speak with Dr. Lerner about it. I expect he'll recommend that I stick with watch-and-wait for the next year or so. On the other hand, maybe he'll say, "No time like the present," and suggest we move ahead.

I’m still getting used to the fact that, with indolent lymphoma, everything seems to happen in slow motion. Answers emerge gradually, over time. It reminds me of that slow-motion opening scene from the film, Chariots of Fire, the one in which the British Olympic team is running ever-so-slowly along the beach, training for the big one. I’m in training, too: although precisely when the big event will take place and what form it will take remains a mystery.

Sunday, September 09, 2007

September 9, 2007 - Centered, Spun, Molded

One thing people with cancer will tell you is that it’s hard to escape from the disease. Our awareness of it is something that’s always with us. At home, at work, wherever we may happen to be, cancer is an unwelcome companion.

When you have a job like mine, one that requires standing up before a congregation every week or so and giving a sermon, that means things get a little more complicated than for most other cancer survivors. Preaching is, by its very nature, a highly personal form of communication. One of the classic definitions of preaching is that of Phillips Brooks: it's “truth communicated through personality.” We’re meant to share something of ourselves and our spiritual life in the pulpit. It’s part of what makes a sermon real.

Yet, on the other hand, there’s a fine line we preachers must be careful not to cross. Personal anecdotes are like salt in a pot of soup: a little is tasty, a lot ruins everything. We can all picture some televangelist or other, whose crocodile tears have made a mockery of the whole homiletical enterprise. Or, maybe we’ve had the agonizing experience of sitting through endless, navel-gazing sermons, presented by shallow drudges who just can’t stop talking about themselves.

(It’s occurred to me, by the way, that maybe that’s one reason I’m writing this blog. It’s a place where I can say what I have to say about my personal experiences, and keep most of that stuff from leeching into my sermons. Them as wants to read that sort of thing can visit here. Them as don’t can steer clear. Meanwhile, I can be as shallow a drudge as I want to be.)

Maybe it was that self-possessed sort of preacher Anthony Trollope was thinking about, when he skewered the preaching profession in his novel, Barchester Towers:

“There is, perhaps, no greater hardship at present inflicted on mankind in civilized and free countries than the necessity of listening to sermons. No one but a preaching clergyman has, in these realms, the power of compelling an audience to sit silently and be tormented. No one but a preaching clergyman can revel in platitudes, truisms and untruisms, and yet receive, as his undisputed privilege, the same respectful demeanor as though words of impassioned eloquence, or persuasive logic, fell from his lips... No one can rid himself of the preaching clergyman. He is the bore of the age, the old man whom we Sinbads cannot shake off, the nightmare that disturbs our Sunday's rest, the incubus that overloads our religion and makes God's service distasteful.”


I’ve tried not to mention cancer too often in my sermons. Sometimes it can’t be avoided: as I share my own reaction to a scripture text, in certain situations I do need to tell folks where I’m coming from. Other times, I keep my own counsel, and speak in generalities.

This morning is one of those times. I’ve decided to preach on Jeremiah in the potter’s house, as he watches the artisan transform a lump of clay into a thing of beauty. I’ve also decided I have to say something about the new book that’s coming out about Mother Teresa, revealing her as a person who – surprisingly, to some – struggled with doubt through most of her adult life.

I’ve had my own doubts over the years, like anyone else, but I can’t say I’ve lived through “the dark night of the soul” as long and as consistently as Mother Teresa appears to have done. Yet, I have to be honest, also, and admit that the experience of a cancer diagnosis has shaken me up – as it would shake up anyone. I feel I’ve come out the other side both a stronger Christian and a stronger person, but getting there has been difficult at times.

I decide not to share any of that in my sermon. I share, instead, some selections from letters Mother Teresa wrote to a few close friends, in which she speaks honestly of her spiritual struggle. Then, I talk about Jeremiah’s vision of the people of Israel being like a lump of clay in the hands of the master potter:

“It can't be a very comfortable process – by definition. If that lump of clay in the potter's hand had feelings, you can only imagine what those feelings would be. The cutting of the wet clay, the punching it down, the throwing of it onto the wheel, the centering, the molding – and then, at the last, the firing – it's all a process that could only be described as painful.

As painful as a dark night of the soul, such as Mother Teresa felt? Perhaps.

The point is, there are times in life when you and I do experience suffering, of one kind or another. The work of faith, then, becomes a sort of re-positioning of those painful experiences, so we can understand them as directed toward a higher purpose. In the tough times you and I sometimes undergo, God just may be molding us into something beautiful, something we may not get to see in its entirety, because of our position in the center of the potter's wheel. Perhaps it will not be until the life to come that we glimpse the ultimate outcome.”

I make the point that, in times of trouble, it helps if we allow ourselves to be centered, spun and molded – just as happens to the lump of clay on the potter’s wheel. We must center our lives on God; we must endure the spinning, disorienting sensation of change; and we must understand that, when we feel the transforming pressure of the potter’s hands, it is all, somehow, working towards a greater good.

I wonder what the people in the pews think – at least, the ones who are paying attention – as they hear me say things like that? Are they immediately thinking of my struggle with cancer, though I haven’t mentioned it specifically? Or, are they thinking more of the troubles they’ve seen in their own lives?

“Truth communicated through personality.” It’s a fine line we preachers walk.

Saturday, September 08, 2007

September 7, 2007 - Crazy, Sexy Cancer

No, I haven’t lost my mind. That title is borrowed from a film I just watched on The Learning Channel. I’d saved it on the TiVO just before leaving for a week of study leave up at our Adirondacks place (which, by the way, is why I haven’t written any blog entries for a while).

Crazy, Sexy Cancer is an autobiographical indie documentary, made by a young woman named Kris Carr, who’s got a rare and incurable form of cancer that’s led to the growth of tumors in her lungs and liver. Kris is an actor, who was evidently experiencing some success with movie and TV roles (including an episode of Law and Order, and being a “Bud Girl” in Super Bowl commercials), before her diagnosis hit her like a ton of bricks. She quit the acting biz, and went into self-care full-time, traveling around the country seeking various complementary treatments (she says has good medical insurance to cover her traditional treatments, and financed all this jetting around by selling her New York apartment – although I wonder if she’s got other sources of financing).

I wouldn’t have thought I’d have much in common with someone like Kris (married, fiftysomething suburban Presbyterian pastor meets single, thirtysomething New York actor who practices yoga and New-Agey alternative treatments) – but, in fact, I do. Although Kris and I have different forms of cancer, and have generally taken different treatment paths, there are many places where her story and mine intersect.

Kris evidently started keeping a video journal just days after her diagnosis. Later on, the journal project became a full-blown documentary. The film catches her reactions to her illness at various stages. It’s honest, edgy, and very much focused on the perspective of young adults with cancer – who, in addition to everything else, have to worry about questions like whether they’ll ever be able to have children, and whether they’ll ever find someone to marry.

Like me, Kris is not in remission, but her cancer is moving so slowly that her doctors are recommending a “watch and wait” approach. This is where I really resonated with her situation. When I heard her doctor at Boston’s Dana-Farber Cancer Institute explaining to her the counter-intuitive reasoning behind “watch and wait” – why pursuing no treatment for a time can have as good a therapeutic result as chemotherapy and similar aggressive approaches – I heard echoes of Dr. Lerner trying to explain the same thing to me.

The film shows Kris subjecting herself to some rather demanding alternative treatments, like macrobiotic diets and blender shakes (and enemas!) made from wheat grass. She explores Hindu religious practices. Some of these approaches she keeps up, and others she discards after a while. At the end, her doctor tells her that her disease is “stable” – although, having watched him speak to her several times, at various stages of her journey, it seems to me like he expected this could well be the outcome, regardless of the complementary treatments she pursued. Were these treatments responsible for her good results? It’s impossible to say. But they were part of how she took charge of her own situation, so “more power to her,” I say (although you won’t see me drinking wheat-grass potions any time soon).

In an interview on the Today show, Kris speaks of “pulling a dumpster up to my life” and ridding herself of all that was inessential. “As I was looking for the cure, I really found my life.” She sounds a lot, here, like Lance Armstrong, who has said, “Cancer is the best thing that ever happened to me.” I can certainly attest to the fact that it does give your life a certain focus.

Kris is presently on a national book tour, promoting her self-help book, Crazy Sexy Cancer Tips. She’s also blogging about the experience.

Her film is well worth watching. She doesn’t know, by the way, whether TLC will ever replay it, but a DVD is apparently in production.