Tuesday, December 30, 2008

December 30, 2008 - Christmas Haste

Christmas has come and gone, without a blog entry. That’s mainly a function of my being so busy.

It was a good Christmas. Ania was back from Chapman University for the holidays, and Ben continues to be living here at the house, as he works full-time giving guitar lessons. My mother, Shirley, is now living back in New Jersey, having moved up here from North Carolina in September. Brother Jim came down from Boston for the holiday. From Claire’s family, we welcomed her sister Eva and her daughter Elizabeth (who also live in our house), as well as her brother Victor from Baltimore, with his kids, Chelsea and Nick; and Claire’s sister Ramona, from New York City. There were a few friends here, besides.

It made for a full table at Wigilia, the traditional Polish Christmas Eve vigil supper from Claire’s family tradition, which we somehow squeeze in between the 7:00 and 11:00 pm Christmas Eve services. (Here’s a picture of Claire spreading some straw on the dining-room table, assisted by Murphy the cat – the straw goes under the tablecloth, and is symbolic of the straw of the manger.)

A few days before the holiday, we had about 30 members of the Youth Connection group here for pizza and snacks, after their annual Christmas caroling expedition to homebound and nursing-home folks.

As for the Christmas Eve services, we had the usual children’s service at 4:00, followed by Candlelight Services of Lessons and Carols at 7:00 and 11:00. My sermon, “A Hasty Christmas,” focused on that line from Luke’s Gospel that describes how the shepherds “went with haste” to Bethlehem.

It’s a perfectly ordinary phrase, but to me it seems to offer a basis for reflecting on how many of us tend to approach the holiday. There are two kinds of haste: the stressful kind that pushes you, and the wondrous kind that pulls you. While the shepherds may have had good reason to fear the angels (who, in good biblical tradition, were anything but gentle emissaries of sweetness and light), I like to think they rushed down off that hillside because of the wonder of Word-made-flesh that was apparent in that humble stable.

From the sermon:

“There is another kind of haste, besides the sort that pushes us. There’s also the haste that pulls us. It’s the same sort of haste grandparents feel, as they’re waiting in an airport lounge to go visit their new grandchild for the first time. It’s the sort of haste a young man feels, when he’s off to pick up that special young lady to take to the prom. It’s the sort of haste that says, ‘Come on, let’s go – every minute we delay is a minute we won’t be there!’

It’s the sort of haste we’ve all come to know, when Christmas is at its very best. It’s not the tyranny of the to-do list, but the joy of a churchful of people singing carols; the glow of the candlelight, passed from hand to hand during ‘Silent Night’; the swell of the organ, as we roll into that first stanza of ‘O Come, All Ye Faithful.’ It’s the sort of haste that beckons us onward, that wins cold hearts over, that pulls us out of the December doldrums and sets us gently down into a holy place, a place of light and love and faith.”

One of my growing edges, in these days of watch-and-wait monitoring of my lymphoma, has to do with maintaining the right kind of haste in my life. Better to be pulled than pushed. Better to be motivated by wonder than by worry.

It's a tough balance to maintain – but I’m working on it.

Tuesday, December 23, 2008

December 23, 2008 - Lisa's Story

Today, I follow a link in an e-mail from the Leukemia and Lymphoma Society to “Call to Action: Health Reform 2009,” a white paper issued by U.S. Senator Max Baucus, chair of the Senate Finance Committee. I only have time to glance at it briefly in this busy holiday season, but one real-life story catches my eye – not only because it’s the story of a blood cancer patient, but also because it’s an all-too common story in America’s dysfunctional health-care funding system:

“In 2006, Lisa Kelly was diagnosed with acute leukemia. She had insurance – an AARP Medical Advantage plan, underwritten by UnitedHealth Group Inc. with a monthly premium of $185. Unfortunately, the policy had a $37,000 annual limit. And due to the flimsy coverage provided by her policy, the hospital, M.D. Anderson Cancer Center, requested an up-front cash payment of $105,000 before it would start providing chemotherapy treatment.

Ms. Kelly enrolled in a high-risk insurance plan administered by Blue Cross Blue Shield of Texas in February 2007, with a monthly premium of $633. Since her cancer was a pre-existing condition, she had to wait one year for the new plan to cover her treatment. Although Blue Cross started paying her new hospital bills earlier this year, Ms. Kelly is still personally responsible for more than $145,000 in bills incurred before February 2008, and she is paying $2,000 each month for those bills. In June, she learned that after being in remission for more than a year, her leukemia has returned.”
( “Call to Action: Health Reform 2009,” p. 11)

This kind of story really makes me angry. Here’s a person who didn’t just blow off the need for medical insurance. She went out and bought insurance she could afford. She undoubtedly thought she was covered for pretty much anything that could happen to her. A $37,000 annual limit does sound like a lot of money to a healthy person.

It's not. Anyone who’s been around Cancer World knows that cap is woefully inadequate: but most people don’t realize how rapidly and how high medical expenses can pile up, when certain illnesses come crashing down on you from out of the blue. After diagnosis, it’s even worse. You get branded as having a pre-existing condition, and then you’re up a creek without a paddle. For life.

A free-market conservative might counter, “Lisa got what she paid for: an inadequate policy. She should have shopped around more. Caveat emptor.”

All that caveat emptor (“Let the buyer beware”) talk doesn’t sit well with me. As far as I’m concerned, it’s giving unscrupulous medical-insurance companies a license to steal. If we’re learning anything as a result of the current mortgage meltdown, is that the legal sharks can devour a whole lot of victims by hiding in the fine print. What’s true for predatory mortgage loans is just as true for medical-insurance policies.

Lisa’s story is not an isolated situation. From the white paper’s executive summary:

“The U.S. is the only developed country without health coverage for all of its citizens. An estimated 45.7 million Americans, or 15.3 percent of the population, lacked health insurance in 2007 – up from 38.4 million in 2000. Those without health coverage generally experience poorer health and worse health outcomes than those who are insured. Twenty-three percent forgo necessary care every year due to cost. And a number of studies show that the uninsured are less likely to receive preventive care or even care for traumatic injuries, heart attacks, and chronic diseases. The Urban Institute reports that 22,000 uninsured adults die prematurely each year as a direct result of lacking access to care.” (p. 10)

This past Sunday, we held a Health Care Community Discussion at our church, responding to the Presidential Transition Team’s invitation to do so. The discussion went fine – a lively airing of perspectives among people of differing views. Participants completed a brief poll, the results of which we sent on to the Transition Team afterwards, via the internet.

Two church members had approached me separately, prior to the discussion, objecting that this sort of event doesn’t belong in a church. It’s “too political,” they said.

I countered that the election is over, so this couldn’t possibly be about partisan politics. Responding to an invitation from the President-Elect is different from answering the call of someone who’s still standing for election, I explained. But I doubt if either one heard me. Neither one came to the discussion, unfortunately.

I am 100% convinced that this sort of discussion does belong in the church. It probably belongs in the church more than in any other organization – with the possible exception of a hospital or other health-care provider – because we Christians follow a Lord who made healing a big part of his ministry. The American Cancer society has declared lack of medical insurance to be a risk factor for cancer (see my August 31, 2007 blog entry). If we can foster discussion that will lead, ultimately, to less people being at that kind of risk, then we – indirectly, at least – are about the work of healing.

Wednesday, December 17, 2008

December 17, 2008 - Revelation

This evening I teach an adult-education class on the book of Revelation. It’s the concluding session of a mini-series we’ve been doing this Advent.

Revelation may not seem, to some, like appropriate subject-matter for the jolly weeks leading up to Christmas – but, in fact, Advent is traditionally a time for reflecting on the promise of Christ’s return and the final consummation of all things.

As I teach the class, I take pains to distance my own views from those who see in Revelation definitive signs that Christ is coming soon - preceded by various cataclysmic events, hints of which can be seen in today’s news. (The most cataclysmic event in this way of thinking – something called “the Rapture,” when the faithful will be bodily taken up into heaven – doesn’t come from Revelation at all, but from a decidedly odd interpretation of 1 Thessalonians 4:13-18.) Such an interpretation of the Bible – made wildly popular by Hal Lindsay’s 1970 bestseller, The Late, Great Planet Earth, and the more recent Left Behind novels of Tim LaHaye and Jerry Jenkins – is based on a total misreading of the scriptures, as far as I’m concerned.

Few of the Christians who gleefully advance such views realize they’re built on a minority biblical inter- pretation, dreamed up as late as the mid-19th century, that only became popular in the 20th. Rapture Theology – known to theologians by its technical term, dispensationalism – is an artificially-created interpretative grid laid over top of the scriptures, that’s out of sync with historic Christianity. It’s based on anything but a literal reading of the Bible – although most proponents will protest till they’re blue in the face that they’re not interpreting at all, but are simply reporting what scripture plainly says.

Beware of any Bible teachers who claim they never interpret the text, I always say. They’ve probably got a fifth ace up their sleeve.

Anyway, as our little group opens Revelation this evening, I’m struck yet again by how powerful is its imagery, how deep its spirituality. It truly is a difficult book to understand, but for those who persist, it yields rich treasures. It’s an especially powerful book for those who are suffering in one way or another, who have been forced by life’s hard knocks to contemplate death and the life to come.

“Then another angel came out of the temple in heaven, and he too had a sharp sickle. Then another angel came out from the altar, the angel who has authority over fire, and he called with a loud voice to him who had the sharp sickle, ‘Use your sharp sickle and gather the clusters of the vine of the earth, for its grapes are ripe.’ So the angel swung his sickle over the earth and gathered the vintage of the earth, and he threw it into the great wine press of the wrath of God. And the wine press was trodden outside the city, and blood flowed from the wine press, as high as a horse’s bridle, for a distance of about two hundred miles.” (Revelation 14:17-20)

Unless I miss my guess, that passage is the source of the iconic image of Death wielding a sickle. Is this passage unnecessarily maudlin, reveling in gory details that better belong to some teen slasher movie? Not really, considering that Revelation was written for churches undergoing severe persecution. (OK, a river of blood deep as a horse’s bridle is obvious hyperbole, but its poetic imagery would have spoken to the persecuted, all the same.)

Most people with only a superficial understanding of Revelation think the book is all about shocking imagery like this. Yet, those who persist in reading the entire book soon realize its intention is not to incite fear. No, the deep message of Revelation – a drumbeat that begins softly in the first chapters, slowly swelling to crescendo by the book’s triumphant conclusion – is that of hope, hope for those who have suffered much:

“And I heard a loud voice from the throne saying,
'See, the home of God is among mortals.
He will dwell with them; they will be his peoples,
and God himself will be with them;
he will wipe every tear from their eyes.
Death will be no more;
mourning and crying and pain will be no more,
for the first things have passed away.'”
(Revelation 21:3-4)

Revelation frankly acknowledges the agonies and heartaches of life, but at the end of the day, its message is deeply healing:

“Then the angel showed me the river of the water of life, bright as crystal, flowing from the throne of God and of the Lamb through the middle of the street of the city. On either side of the river is the tree of life with its twelve kinds of fruit, producing its fruit each month; and the leaves of the tree are for the healing of the nations.” (Revelation 22:1-2)

Every time I reach into the baptismal font and scoop up some water to pour over a baby’s head, the bright drops that drip from my cupped palm are the water of life. Such a vision is what keeps me going, despite the inescapable signs of death and suffering I’ve seen. It’s what keep us all going, we who have sensed the touch of God in our lives.

“The Spirit and the bride say, ‘Come.’
And let everyone who hears say, ‘Come.’
And let everyone who is thirsty come.
Let anyone who wishes take the water of life as a gift.”
(Revelation 22:17)

Tuesday, December 16, 2008

December 16, 2008 - Cancer: The World's Top Killer

Recently I ran across an Associated Press article that began with these words:

“Cancer will overtake heart disease as the world's top killer by 2010, part of a trend that should more than double global cancer cases and deaths by 2030, international health experts said in a report released Tuesday.

Rising tobacco use in developing countries is believed to be a huge reason for the shift, particularly in China and India, where 40 percent of the world’s smokers now live.”

So, cancer’s about to become #1 in the deadly-disease sweepstakes. That, the article goes on to say, is based on estimates of 12 million cancer diagnoses per year – and, 7 million cancer deaths per year.

My diagnosis puts me in good company, evidently. Not that I want to have any traveling companions on this journey, of course.

It’s sad to read about so many smoking-related lung cancer deaths - especially in places like China and India, where incomes are so low people can barely afford the cigarettes, let alone the treatment they’re likely to need one day, if they keep on puffing. I know, from hard family experience, what that sort of death is like. My father died of emphysema and lung cancer, after a lifetime of two- or three-pack-a-day smoking. It was not a pretty sight.

“By 2030,” the article continues, “there could be 75 million people living with cancer around the world, a number that many health care systems are not equipped to handle.”

My chemotherapy treatments and the accompanying diagnostic tests cost somewhere in the neighborhood of $100,000, most of it paid by insurance. Of all the people in the world, I’m one of the fortunate – and comparatively wealthy – few who can afford this sort of treatment. Most others, faced with a diagnosis of lymphoma, or any other deadly cancer, would have to content themselves with palliative treatments.

If you’re in doubt whether the adjective “rich” can be applied to you, try comparing your income to that of most other people on this planet. You can do so in a few mouse clicks, by keying your approximate annual income into the Global Rich List calculator.

Sobering facts, indeed.

Thursday, December 11, 2008

December 11, 2008 - I Missed My Cancerversary

Generally speaking, it’s not a good thing to miss an anniversary. Spouses and significant others tend not to be amused by such lapses of decorum.

When it comes to the anniversary of one’s cancer diagnosis, though – one’s cancerversary, some call it – it’s different. A cancerversary can actually be a good thing to forget.

I missed mine this year. Even though the date sits right up there at the top of this blog, bold as brass, I missed it. This December 2 marked three years since that day Claire and I sat in Dr. Lerner’s office and heard him deliver the news.

What does it mean that I forgot my cancerversary? It means I continue to feel fine, even though tests and scans keep flagging enlarged lymph nodes here and there. It means I’ve been so busy, I haven’t been thinking about cancer as much as I used to. It means, in simple calendar terms, I’ve simply put more distance between that day and today.

I can’t relax completely, of course. I can’t put it behind me. I’m not in remission, after all.

That’s the paradox of this indolent variety of the illness. Except for that flickering scan image on some radiologist’s monitor, you feel fine. Life goes on. Yet, all the while, silently and sneakily, the malignancy continues to lurk, and sometimes even to grow. It’s the tiny, hard pea under the stack of mattresses.

Still and all, it’s probably a good thing that December 2 passed me by, without black crepe and dirges. It shows I’m slowly learning how to live with this thing.

Tuesday, December 09, 2008

December 9, 2008 - David Bailey: Survivorship Guide

I’ve written before (see September 14th) about David M. Bailey, singer-songwriter and brain-cancer survivor. I happen to be on his e-mail list, and have been dismayed to learn in recent weeks that his cancer is back and he’s already had to have surgery. After that, he was all ready to have a second operation to install a port in his skull, through which advanced treatments could be directly delivered, but that’s been delayed, for now. The docs are trying to figure out whether a relapsed patient like him can qualify to get this particular treatment (evidently it’s only been approved for those who haven’t had any treatment previously).

In an earlier e-mail (November 29th), he reflects on the stages of adjustment he went through, after learning of his relapse:

“1 - I did the ‘it’s not fair!’ thing but that got old really fast and ended quickly. Of course it’s not fair. It’s also not fair that I already survived over 12 years when so many others have not. And so on.

2 - I did the ‘I can’t do this again!’ thing but that mindset also had to end with a resolute conclusion that it's not a matter of can or can’t. And way before you can even begin to think about mind over matter, you first have to tackle spirit over mind.

3 - When this first happened in 1996 I was unprepared for the multiple levels of healing needed or the bucket of new tools needed for the new journey. This time I’m a wee bit wiser – and for sure, with that wisdom comes some anticipatory dread but also, eventually, slowly, so very slowly, tiny glimmers of hope make their way through the dark. So many of you have been those glimmers to me, reminding me often in my own words things I know are true but still need to rediscover in a new way.

4 - Part of my dismay has been a humbling sense of awareness that so many have found a measure of hope in my last dozen years that to some degree I’d become a symbol of what is possible – a humbling role, but also a sometimes heavy mantle. Well, here’s the scoop. To myself, my family, friends, and fans I make this pledge: I will do as I have passionately pleaded with you to do in thousands of performances:

• I will not ask ‘Why me?’ I will only ask ‘What now?’
• I will practice loving the time. All the time.
• I will insist that the message of hope still never grows old.
• I will endeavor to share that hope, even when I don’t feel it.
• I will remain aware that there are always others walking a harder road than I.
• I will cling to the simple truth that ‘Life Goes On.’
• I will whisper with conviction the angels’ call to ‘Do Not Be Afraid’
• With the love you have already so freely shared, I will know that I am not alone.
• I will keep on walking as long as I am able and God willing, should the sun come up I will shout hallelujah for one. more. day.

Then make coffee.

I don’t know what is waiting but I’m on my way to meeting it.”

I quoted this rather extensive excerpt from David’s e-mail because, to me, he’s a wonderful guide for those of us who are at earlier stages of the survivorship journey. None of us are going to walk exactly the same road, of course, when it comes to remissions, relapses and treatments. But, if we can approach bad news with even a portion of the strength, humility and honesty that David has, we’ll be well on our way to triumphantly dealing with this thing.

One of the things David’s been doing, as he lies there in the hospital, has been to write poetry. I expect that, as a songwriter, it’s something he does all the time. But, this poetry is different. It’s not so polished as the song lyrics on his albums. It’s still kind of a rough draft – doggerel, almost. But, it’s gritty and it’s real. Maybe some songs still in the gestation process?

Here’s an excerpt from an e-mail he sent around on December 6th:

“As the dust has settled, three pillars do remain
Each one stands tall and true and each one has a name
The first one and clearly the biggest of the three:
The pillar of love will never ever fail me
The second one, more slender, but still at least as strong
The pillar of hope lets me sing another song
The third one, the pillar of faith completes the set
They’re ready for the roof; but I am not quite yet
See, I knew something was missing; it just took a little time
To make my head and heart finally get in line
It’s coming back and I can feel it like wind beneath my wings
It’s a simple thing called gratitude and it changes everything
Grateful for my family, grateful for my friends
Grateful to our God for a world that has no end
Grateful to my church and for a thousand meals
Grateful for all the cards – with or without the Starbucks seal :-)
But now it gets much harder, now the rubber meets the road
Can I still be grateful when my soul wants to explode?
Every single second? Maybe not, but I will try
If nothing else, it might make a few folks wonder why
Grateful for the needles, the nurses and the drugs
Grateful for the bruises and the stitches and the hugs
Grateful for the doctors, the interns and the staff
Grateful for the unexpected things that make me laugh
It takes a little practice, but deep down it feels good
Gratitude lets you win more than you thought you could
Pour it deep in your foundation
Make it part of who you are
Then watch the world change like the healing of a scar.”

Grace and peace, David. You’re a guide for all of us.

Saturday, November 29, 2008

November 29, 2008 - How the Light Gets In

I’ve been paging through Jean Shinoda Bolen’s Close to the Bone: Life- Threatening Illness and the Search for Meaning (Scribner, 1996). It’s her contention that serious illness catapults many of us into a spiritual country we’d scarcely dreamed existed:

“Whenever or however that line from health to illness is crossed, we enter this realm of soul. Illness is both soul-shaking and soul-evoking for the patient and for all others for whom the patient matters. We lose an innocence, we know vulnerability, we are no longer who we were before this event, and we will never be the same. We are in uncharted terrain, and there is no turning back. Illness is a profound soul event, and yet this is virtually ignored and unaddressed. Instead, everything seems to be focused on the part of the body that is sick, damaged, failing, or out of control.

A hospital has much in common with an auto body repair shop. It is there with its staff of specialists to diagnose, fix, or replace what it can of the physical body to get it running again. The patient and those accompanying the patient through this crisis are considered to behave well if they do not get in the way of whatever the doctors want to do with the ailing body. Troublesome patients (or their troublesome significant others) ask questions, want to understand what is wrong and why a particular treatment and not something else has been selected, bother doctors with requests, or don't respond properly. The medical setting is one in which there is a definite line of authority, with the doctor in charge and others responsible for carrying out orders. A good patient like a good soldier is one who cooperates or obeys orders. Especially when cancer is the diagnosis but in many other conditions as well, the doctor's perspective is often similar to a general at war: the disease is the enemy to be fought, with the body of the patient the battleground.”
(pp. 14-15)

We human beings are more than the sum of our parts. That’s a conviction that’s driven my vocation in ministry for all these years, and that’s become more and more real to me in my lately-discovered role as cancer survivor.

As a lymphoma survivor, I’ve become used to the medical observation that my cancer is not localized, but systemic. It can’t be treated surgically, because it involves the entire lymphatic system, whose vessels and capillaries snake their way throughout my body. My cancer is part of me, and I a part of it. Whatever treatment I’ve had – and may have to receive in the future – will take out not only the malignancy, but a portion of my healthy self as well.

Yet, as I’m coming to learn, the experience of cancer treatment can also build up my healthy self – particularly its spiritual dimension – in unexpected ways. It’s no empty platitude to state that cancer can be – and often is – a life-changing experience. Bolen continues:

“A life-threatening illness calls to the soul, taps into spiritual resources, and can be initiation into the soul realm for the patient and for anyone else who is touched by the mystery that accompanies the possibility of death. When life is lived at the edge-in the border realm between life and death-it is a liminal time and place. Liminal comes from the Latin word for ‘threshold....’

Illness, especially when death is a possibility, makes us acutely aware of how precious life is and how precious a particular life is. Priorities shift. We may see the truth of what matters, who matters, and what we have been doing with our lives and have to decide what to do – now that we know. Significant relationships are tested and either come through strengthened or fail. Pain and fear bring us to our knees in prayer. Our spiritual and religious convictions or the lack of them are called into question. Illness is an ordeal for both body and soul, and a time when healing of either or both can result.”
(p. 15)

The words of songwriter and poet Leonard Cohen come to mind:

“You can add up the parts
but you won't have the sum
You can strike up the march,
there is no drum
Every heart, every heart
to love will come
but like a refugee.

Ring the bells that still can ring
Forget your perfect offering
There is a crack, a crack in everything
That’s how the light gets in.”

(From “Anthem,” by Leonard Cohen)

Most of us spend our lives looking for that light, in one way or another. The oddly paradoxical truth about cancer is that, for those of its victims who can lift up their eyes from the dusty path in front of them and glance up towards the sky, it can provide a glimpse of the light.

Sunday, November 23, 2008

November 23, 2008 - Brenden's Last Wish

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

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

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

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

Friday, November 21, 2008

November 21, 2008 - Always On My Guard

Busy week. So busy, in fact, that I’ve been meeting myself coming and going, as they say.

Diane, our church secretary, gave notice a couple of weeks ago – early retirement – and, as of this week, is no longer on the job. We’re muddling through with the help of Dottie, our part-time secretary, who’s graciously agreed to give us a few extra hours. Last week, we ran an ad in the classifieds for our modestly-compensated, 30-hour-a-week position. Bam! In no time at all, there was a stack of over 120 resumes spilling off my desktop. (That compares to about 25, the last time we ran a similar ad in response to a secretarial vacancy.)

I’d originally booked the classified ad to run for 10 days. I called the newspaper up and canceled it after 4.

It’s a comment on the state of the economy – not only the sheer number of applicants, but also who they were. Real-estate agents. Legal secretaries. College graduates. Even two or three people with MBAs.

It’s also a comment on the state of health care in America – because, even though our pay scale is barely competitive with for-profit businesses, we do offer excellent health-care benefits: Blue Cross/Blue Shield, through the Presbyterian Pension Plan, for the employee AND family. I think that’s what sent them flocking to our door (or, I should say, to our e-mail address and fax machine). Decent, employer-funded medical insurance with a 30-hour-a-week position is pretty uncommon, it would seem.

But, I digress. I started commenting on how crazy-busy I’ve been, as a prelude to talking about an annoying little medical problem I’ve developed. It may or may not have been exacerbated by lack of sleep.

I’ve got a mouth ulcer, inside my cheek opposite my gums, that’s getting more and more painful. My cheek’s even starting to get a little swollen. Time to see the dentist, I guess. I wouldn’t want to think it’s some kind of abscess, though I suppose it could be – even though there’s no pain coming from any of the nearby teeth.

I have to confess, though, that one of my first thoughts was, “What if it’s cancer?” My rational mind says it couldn’t really be lymphoma, because I’m not aware of any lymph nodes in that part of the face (I checked a couple of anatomy diagrams on the web, just to be sure). The very fact that this thought came to mind, though, is a side-effect of my cancer survivorship.

The thought of recurrence is never far away – even more so for someone like me, whose cancer has already recurred, though it’s been advancing at a snail’s pace.

Most likely, it’s a minor dental problem of some sort – although it’s hard to keep my mind from jumping to the worst possible alternative.

I suppose my mind will always play such tricks on me. Goes with the territory, I suppose.

Monday, November 17, 2008

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

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

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

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

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

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

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

Monday, November 10, 2008

November 10, 2008 - Diagnosis Amnesia

Today, reading an e-mail newsletter, I come across an article about a very real psychological phenomenon I’ve experienced in the past. For lack of a better description, I’ll call it “diagnosis amnesia.” (“New Cancer Patients Retain Little Medical Information,” HealthDay News, October 22, 2008.)

It’s a common phenomenon, it seems: when a doctor has bad news to deliver to a patient, the patient may speak calmly and rationally, ask appropriate questions and nod with evident understanding. But then, the very same patient may walk out of the office and promptly forget a good deal of what the doctor has just said.

I know. That’s what I would have done on the day of my diagnosis, had I not had Claire along with me to remind me of the details, and had I not brought a notebook to scribble down all the medical terms we were hearing for the first time.

The article reports how “researchers... found that most people just diagnosed with cancer remembered less than half of what their doctor had told them.” I can remember concentrating very intently, that day, on what Dr. Lerner was saying to us. I can remember asking him to define terms, to explain the interpretation of test results – all the right questions, in other words. But then I can also remember, while surfing the medical-information web sites at home a few hours later, struggling to recall whether he’d just told me I have B- or T-cell lymphoma (which I now understand is a hugely important piece of information). Many of the details that had been so crystal-clear to me, there in the examining room, had slipped right out of my memory banks. I can remember opening up that pad of paper I’d brought with me, and reading the barely legible notes I’d taken – notes that were so fragmentary, they made little sense. And I’d only written them two or three hours before! It was like I had wool between my ears, or something.

I now recognize this as a common, ordinary symptom of psychological denial. The words, “You’ve got cancer,” are so momentous, so emotion-laden, that they have the capacity to force the brain to do a partial data-dump.

The conclusions of the researchers doesn’t surprise me one bit. “In one ear and out the other” with half of what the doctor has said doesn’t seem at all unusual.

Here’s more:

“Older people tended to ask fewer questions than younger ones, and surprisingly, those who asked the most questions had poorer recall. And people with a grimmer prognosis tended to remember less information than those with a brighter outlook, according to the study.”

Yup. That’s denial, all right.

So, what does this suggest, when it comes to trying to be a good patient? Bring someone with you, for one – a second set of ears always helps. Bring along a notebook, and don’t be afraid to write things down, right there in the doctor’s presence. Also, ask the doctor for booklets and brochures that explain your condition (fortunately, when it comes to most cancers, the doctors have plenty of these to give away, courtesy of the pharmaceutical companies).

And, one more thing: don’t worry if you have a hard time remembering this stuff. It’s just your system hunkering down and trying to protect you from the impact of dreadful news. Don’t be surprised if you have to reconstruct, later, what you heard – based on what your friend or family member recalls, and what you wrote down in your notebook.

Diagnosis amnesia is a powerful thing – and very real.

Saturday, November 08, 2008

November 8, 2008 - Unfinished Business?

I just picked up a new book that promises to help me make sense of my situation as a cancer survivor. Oddly enough, it was written by a man who’s dying.

Forrest Church has served more than 30 years as pastor of All Souls Unitarian Universalist Church in New York City. Love & Death: My Journey Through the Valley of the Shadow (Beacon, 2008) is the newly-published memoir of his journey through esophageal cancer.

What attracted me about this book, when I first heard it mentioned on NPR’s October 27th Fresh Air program, is that it was written by a preacher. Like me, Forrest Church has struggled to figure out how to be a cancer survivor while at the same time striving to bring a message of hope and peace to his congregation. A challenging task, that – finding the right balance between honesty and privacy.

As I page through this fine book – one of those little volumes that’s best read slowly – I expect I’ll find more than one insight to share here in my little corner of cyberspace.

One of the things Forrest marveled at, when he was first diagnosed, was how calmly he received the news:

“One of the first topics I tackled – still probing it to test any hint of denial at its core – was the way I cut straight to acceptance on first hearing what appeared at the time to be a death sentence. I came up with an explanation for my ease of mind.... The key is unfinished business....

Don’t get me wrong. I wasn’t happy about the prospect of dying. I had things left to do in my life and regretted the interruption of all my splendid plans.... My acceptance, however, abided in a deeper place. I was free to die, I realized, because, although I had much ongoing business, I had no unfinished business. I had made peace with myself, my fellows, and with God”
(pp. 90-92).

I’m still pondering that distinction Forrest makes, between unfinished business and ongoing business. I think he’s onto something there.

I remember, in those days of December, 2005 and January, 2006, how life took on a peculiar intensity, in a way I’d never before experienced. After months of uncertainty, I had been diagnosed for sure. I didn’t fight that truth, in my mind. I, too, cut straight to acceptance. I girded my loins for the struggle ahead.

It’s not that I went through life preternaturally calm. I was plenty scared. But what scared me was more the prospect of suffering than the prospect of dying. If I am to die, I remember thinking to myself, it is what it is, and that’s all there is to it. I’ve been talking about God’s love, professionally, most of my adult life. Pretty soon, I’m going to find out firsthand how real that love is.

It was actually liberating, in an odd way. Suddenly, much of the oppressive weight of ongoing business in my life slipped away. I no longer needed to bother with that trivial stuff. My life had a singleness of purpose, as never before. That purpose was to get well, or die trying.

Now, several years later, I find myself in this odd limbo of being out of remission but no longer needing active treatment. I could be in this in-between place indefinitely.

Do you want know something strange? I miss the singleness of purpose of those post-diagnosis days. I don’t wish the fierce malignancy back, of course, and I’d be perfectly happy never to undergo chemotherapy again. But somehow, I wish I could recapture that low hum of purposefulness that was the music of my days.

I suppose it’s a sort of wisdom the contem- platives gain, after years of focused prayer. They gain it without having to face down a potentially life- threatening illness. I believe it’s possible to achieve that degree of focus in life, purely by seeking it, but it’s terribly difficult. Only a very few of us achieve it, without a life-threatening crisis to help us along.

As the chemo nurses opened my veins and poured in adriamycin, that harsh medicine they call “the red death,” I was receiving another sort of medication that aided my soul’s healing. It was that singleness of purpose, that purity of heart. The Danish theologian Søren Kierkegaard once wrote a book called Purity of Heart Is To Will One Thing. That’s what I was doing, in those days. I was willing one thing.

“Blessed are the pure in heart,” says Jesus, “for they will see God.” (Matthew 5:8)

Friday, November 07, 2008

November 7, 2008 - Sequencing the Cancer Genome

All but buried by the profusion of political articles in yesterday’s newspaper was an article about a remarkable break- through in cancer research.

Working with the genes of a woman in her 50s who died of leukemia (AML), scientists at Washington University in St. Louis have sequenced the entire genome of cancer cells taken from her bone marrow, and have compared it to the genome of her healthy skin cells. This was the first time this has ever been done as a method of cancer research.

The comparative study revealed 10 separate genetic mutations present in the woman’s cancer cells, that likely had some impact on her disease: either causing her cancer or affecting her response to treatment. In an elaborate number-crunching exercise, the scientists picked these mutations out from among the 20,000 or so genes that make up the human genome. (By contrast, previous studies have searched for mutations only among 100 or so genes scientists have suspected could be involved.)

As the New York Times reports, it was a technically daunting task:

“The new research, by looking at the entire genome – all the DNA – and aiming to find all the mutations involved in a particular cancer, differs markedly from earlier studies, which have searched fewer genes for individual mutations. The project, which took months and cost $1 million, was made possible by recent advances in technology that have made it easier and cheaper to analyze 100 million DNA snippets than it used to be to analyze 100.”

This is gee-whiz technical wizardry, but – more importantly – it holds out real hope for cancer research in general. With these powerful new tools at their disposal, researchers will be able to isolate and focus in on genetic mutations that are of interest. They can then identify hitherto-unknown causes of that particular type or cancer, or create therapies to successfully defeat it.

As this technique is used to study more cancer patients, comparisons will be made between one person and another. This is expected to reveal a number of mutations that are unique to each individual, some of which could be used to create “designer drugs” to help them recover. Eventually, though – and far more exciting – a few mutations will likely turn up that are common to all patients with that type of cancer.

That is the holy grail of cancer research: a single mutation that’s responsible for causing that type of cancer. In the words of Washington University researcher Richard K. Wilson:

“Ultimately, one signal tells the cell to grow, grow, grow. There has to be something in common. It’s that commonality we’ll find that will tell us what treatment will be the most powerful.”

Exciting stuff, indeed. A reason for hope!

Wednesday, November 05, 2008

November 5, 2008 - Yes, We Can

“If there is anyone out there who still doubts that America is a place where all things are possible, who still wonders if the dream of our founders is alive in our time, who still questions the power of our democracy, tonight is your answer.”President-Elect Barack Obama, November 4, 2008

Last night, our world changed. The election of Barack Obama as President is far more than merely politics-as-usual. Even John McCain seemed to acknowledge that truth in his gracious concession speech. Americans proved last night that we are hungry for change – real, substantive change – and the rest of the world is right there with us.

Last night, I sat and watched CNN’s coverage of the election, from the very first results until the milestone moment just after the West Coast polls closed at 11 p.m., when all the networks acknowledged Obama as the winner. The CNN broadcast was punctuated by repeated (and, surely, very costly) commercials from DividedWeFail.org, an organization committed to health-care funding reform.

Here’s one:

The family profiled in the video had insurance. It wasn’t enough. When this man’s wife contracted brain cancer, it started them on a downward slide that led to bankruptcy.

Another of these commercials told the story of a twentysomething young man who also had to declare bankruptcy, after going into the hospital for emergency surgery. He, too, had medical insurance – but, he said, it turned out to be more like a supermarket cents-off coupon than real coverage.

Who is DividedWeFail.org? Some radical fringe group? Some shadowy cabal of socialists?

No way. They’re AARP!

Yes, AARP. The senior citizens’ lobby. They’ve taken on health-insurance reform with a vengeance. They paid big bucks to wallpaper the election-night newscast with commercials – on a night when it was obviously too late to influence the vote’s outcome – because they know the campaign for Americans’ hearts and minds on this issue is not over. It’s barely begun.

One piece of good news I, personally, take away from this election is that the desire for universal health care (or something very close to it) has become so mainstream in America, that we’re finally going to see some change. Blind faith that mysterious “market forces” will magically solve America’s problems is dead. “Voodoo economics” – as former President George H.W. Bush sensibly called this ruinous ideology, before changing his stripes to become Ronald Reagan’s vice president – has been repudiated, at long last.

Now, we can join the rest of the developed world in building a health-care funding system that serves clients, rather than stockholders. We can eliminate that hugely inefficient layer of middle-management that’s been slurping up so many of our health-care dollars, and apply that money to providing real medical care – and saving real, human lives.

It’s going to be a long journey from here to there. Barack’s got a hugely imposing set of challenges before him. Somehow, he and his team have got to convince everyone involved in delivering medical services – from Big Pharma to the A.M.A. to hospital administrators – that they can not only survive, but flourish in a system that guarantees health care for all.

It can be done. All the other industrialized nations of the world now have such a system. As the Johnny-come-lately, we have the advantage of being able to study the successes and failures of other nations. Then, we can apply good, old-fashioned American inventiveness and ingenuity to devise a system that’s the best in the world.

We can do it. Yes, we can.

Tuesday, November 04, 2008

November 4, 2008 - VOTE!

The long-awaited Election Day is upon us. Time for us all (or, at least, all of us citizens of the U.S. of A.) to get out there and stand up for what we believe in.

I like what Jim Wallis wrote yesterday on his “God’s Politics” blog, under the headline, “My Prayer for Election Day.” Here’s an excerpt:

“We pray most of all against a spirit of fear. The Scriptures say that ‘God has not given us a spirit of fear but a spirit of love, a spirit of power and a strong mind.’ Help us to remember the words of our Lord Jesus, who reminds us that love casts our fear and to be not afraid. If the Scriptures say, ‘Yea though I walk through the valley of the shadow of death I shall fear no evil,’ certainly we can make it through election day. No matter how we vote, let us vote more for the visions, ideas, and candidates that best represent our best values; rather than voting against candidates simply because of the negative and often manipulative things that others have said about them....

Today we also pray for those who will vote differently than we do, for their own reasons also deeply rooted in faith. And we pray, despite the outcome of the election tomorrow, that we will find the ways to build bridges and work together for the common good of the country we all dwell in. And may our votes tomorrow be guided less by a fear of our neighbor and more by a hope for the future.”


Now get out there and pull that lever, check that box, touch that touchscreen or do whatever else your local election board requires.

Sunday, November 02, 2008

November 2, 2008 - Talking to Children About Death

Today – the Sunday closest to All Saints Day – is our annual Service of Remembrance at the church. In our worship bulletin, we list the names of all the members and friends of our congregation who have died in the past 12 months, and pray for those who are mourning them.

This year, I do something I’ve never done before. I preach an entire sermon directed to the children of the church. There are plenty of adults here, as well, but I explain to them that their role today is to sit back and listen in to what I’m saying to the children.

My sermon is about death. Now, that subject may not top most people’s list of things to discuss with children, but in my experience it’s something kids do worry about sometimes – and parents, too, as they try to figure out what to say to their kids when there’s been a death in the family. With our Service of Remembrance theme today, the topic does seem to fit.

I’m used to doing brief two- or three-minute Children’s Sermons in the worship service, but I wasn’t sure I’d be able to pull off an extended version. Somehow it all does seem to come together.

Here’s an excerpt:

“You’ve probably noticed, when someone you know has died, that other people around you feel sad. Maybe even your mother or father felt that way. Maybe you even saw them cry – something you don’t see very often.

That can be one of the hardest things about somebody dying – how sad everybody around us feels. When somebody who’s close to us dies – someone in our family, or even an animal that’s a pet – we do feel sad.

Nobody wants to feel sad, but sometimes it’s a good thing to feel that way. Sad isn’t bad when someone we love has died. Sad is just the way we feel at a time like that. It feels good, then, to be around other people who are feeling the same thing. It’s good to get some extra hugs, or to give them. It’s good to crawl up into the lap of our mother or father – if you’re small enough to do that – and just feel safe and warm and loved....

The Bible tells us that, if we love Jesus, you and I go to live with God when we die. The place where God lives is called heaven. We have no idea what heaven looks like, or feels like, or sounds like, but we know it’s a very wonderful place. This world of ours is a wonderful place, too, and God wants us to stay here, with our families, as long as our lives last – but we know our lives don’t last forever. When we die and go to be with God, it’s something like climbing up into the lap of our mother or father, and feeling all warm and welcome and safe.”

There’s more to it than that, of course. You can check out the full version HERE, if you’d like.

I refer to a couple of Bible passages. One is the story of Elijah’s restoring to life the son of the widow of Zarephath (1 Kings 17:17-24).

I also draw upon a passage from 1 John:

“Beloved, we are God’s children now; what we will be has not yet been revealed. What we do know is this: when he is revealed, we will be like him, for we will see him as he is.” (1 John 3:2, Contemporary English Version)

What I do, this morning, is speak from the heart. There’s nothing sophisticated about today’s message: it’s just basic Christianity.

I don’t think this is a sermon I could have preached before I had cancer. Somehow, the experience of having had a life-threatening illness has freed me to speak with a certain degree of personal authority. Not that I mention my own health situation, of course. The effect is more subtle, and interior to me.

I get a lot of favorable comments from people at the church door afterwards. Some of the adults respond with emotion: there’s nothing like trying to see death through a child’s eyes to bring out strong feelings.

No matter how old we get, on some level we never stop being children.

Monday, October 27, 2008

October 27, 2008 - George Herbert on Prayer

In my study-leave reading, I ran across a remarkable poem by George Herbert. I’ve long admired the poetry of this seventeenth-century Welsh divine. Herbert, a sickly man from a noble family, was ordained a priest at mid-life and labored in an obscure country parish. He died soon after, and would have quickly been forgotten were it not for his poetry, stunning in its imagery and use of the English language.

Reading a George Herbert poem is not easy. Like the scribblings of Shakespeare, his writing is studded with archaic vocabulary. To the persistent, though, what seems dense and incomprehensible at first slowly reveals hidden treasures.

Here’s the poem:

Prayer (I)

Prayer the Churches banquet, Angels age,
Gods breath in man returning to his birth,
The soul in paraphrase, heart in pilgrimage,
The Christian plummet sounding heav’n and earth;

Engine against th’Almightie, sinner’s towre,
Reversed thunder, Christ-side-piercing spear,
The six daies world-transposing in an houre,
A kinde of tune, which all things heare and fear;

Softnesse, and peace, and joy, and love, and blisse,
Exalted Manna, gladnesse of the best,
Heaven in ordinarie, man well drest,
The milkie way, the bird of Paradise,

Church-bels beyond the stars heard, the souls bloud,
The land of spices, something understood.

So, what is prayer, anyway? Herbert’s answer comes in the form of metaphors, slung at us readers rapid-fire. Their meaning is so rich, you have to spend a little time with each one, turning it over and over in your hands...

“the Churches banquet”
– a biblical allusion, to any one of a number of passages that see the life to come as a rich feast. Isaiah sings of “a feast of rich food, a feast of well-aged wines,
of rich food filled with marrow, of well-aged wines strained clear”
(25:6). Jesus tells a parable about a host so determined to fill every seat at his banqueting-table that he throws the doors open to street people (Luke 14:15-24). “You that have no money, come, buy and eat!” (Isaiah 55:1). Prayer is a feast, to which all are invited.

“Angels age” – Since Herbert doesn’t use apostrophes to indicate possession, this could mean “angels growing older,” or it could be – with an apostrophe – “the era of the angels.” I think it’s the latter. There’s something timeless about prayer.

“Gods breath in man returning to his birth”
– The poet of Genesis sees life as breath: the Creator God breathing life into nostrils of inanimate clay. To Herbert, prayer is a sort of exhalation, an exchange of respiration.

“The soul in paraphrase”
– To paraphrase dense prose is to render it understandable. In prayer, the human soul gives voice to its subtlest heartbeat, its deepest longing.

“heart in pilgrimage” – This one’s self-evident. Prayer is a long and deliberate Godward journey. It also suggests that prayer is best engaged as a long-term discipline.

“The Christian plummet sounding heav’n and earth”
– To us, “plummet” means to drop or fall, but it’s related to an old word for “lead.” The plumb is a lead weight a builder hangs from a line, in order to build a perpendicular wall. Ancient mariners would fling a lead weight overboard, attached to a line, in order to gauge the ocean’s depth. This technique was called “sounding.” Prayer, then, helps us test the depth of dark and incomprehensible mysteries.

“Engine against th’Almightie, sinner’s towre”
– The next few lines are about prayers of lament or imprecation: angry prayers that give honest voice to human pain and frustration. The “engine” is probably a siege engine, the ponderous wooden contraption an attacking army would wheel up against a city wall. Some of these siege engines were so tall, they could be called towers. A woman in my lymphoma support group was speaking recently of how her cancer has led her to ask the “Why me?” question. Cast in the form of prayer, such a question is an “engine against th’Almightie.”

“Reversed thunder” – If God sends thunder and lightning upon the earth, then prayer is our means of sending it rumbling right back. “The crash of your thunder was in the whirlwind; your lightnings lit up the world; the earth trembled and shook” (Psalm 77:18).

“Christ-side-piercing spear”
– Here, the poet considers the full implication of prayers of lament or imprecation. Such prayers, while honestly voicing human pain, are as the spear that pierced Christ’s side.

“The six daies world-transposing in an houre” – Prayer actually compresses time, wrapping the six days of Creation up as in a single hour.

“A kinde of tune, which all things heare and fear”
– There’s an old tradition of singing our way through suffering. Think of African-American spirituals, or the rhythmic chanting of chain gangs. As long as Christians can still sing, as long as they can still pray, oppressors hear and tremble.

“Softnesse, and peace, and joy, and love, and blisse, exalted Manna, gladnesse of the best” – Prayer is power, but also it gives voice to feelings of deep and perfect peace.

“Heaven in ordinarie, man well drest” – Herbert returns to his earlier image of reversal, of dynamic exchange. Earlier, he described an exchange of breath (“Gods breath in man returning to his birth”). Now, he gives us an exchange of wardrobe. In prayer, heaven takes on the garb of an ordinary peasant, while humanity is attired as a grandee. In Herbert’s time, clothing instantly revealed what level of society its wearer belonged to. Laborers who habitually wore “ordinarie” homespun could never aspire to the silk doublets and hose of the nobility, let alone the fine cloth and lace collars of the rising merchant class. Prayer, however, is equally accessible to all. It flattens the most pronounced social division of all, that between earth and heaven.

“The milkie way, the bird of Paradise”
– Exotic images, these. Prayer allows us to reach out and touch the unattainably beautiful.

“Church-bels beyond the stars heard” – One of my most enduring memories of my year at Oxford in 1976-77 is the weekly, Sunday-evening rehearsal of the change-bell ringers. For an hour or so each Sunday, the skies above that town of many spires echoed the glorious cacophony of the bell-carillons, their ringers all practicing at once. It seemed like those melodies could reach even to the stars.

“the souls bloud” – Someone once observed that, if writing is the act of transforming blood into ink, then the dramatic act of speaking it aloud is the transforming of ink into blood. As the poet pours out the blood of human experience upon the page, so too does the poet transform “the soul’s blood” into the words, or even the silent communion, of prayer.

“The land of spices” – Another exotic image. To people of Herbert’s time, the far-off Indies, the spice islands, exerted an exotic and compelling pull on the imagination.

“something understood” – Herbert’s final metaphor for prayer is his simplest and most compelling, in an understated way. When we pray, often and with regularity, we gradually come to understand.