January 22, 2009 - Method in the Madness?

I’ve been in Bradenton Beach, Florida this week, attending The Homiletical Feast – a preaching conference I attend each year. Not that Florida has offered any balmy weather: it’s been as low as 32 degrees here this week. The exegetical papers we’ve considered in the group have been high-quality, as usual, and the discussion and mutual support has been more valuable than words can say.

These 16 or so ministers are among my most valued colleagues. Over the years, they’ve become friends as well. We only meet once a year, but the four days we spend together are a time of talking, sharing and supporting one another, as we reflect on this demanding occupation.

Earlier today, one of my colleagues shared a poem by Larry Smith called “What You Realize When Cancer Comes.” He found it on Garrison Keillor’s The Writer’s Almanac program on American Public Radio. Here’s an excerpt:

“You will not live forever – No
you will not, for a ceiling of clouds
hovers in the sky.

You are not as brave
as you once thought.
Sounds of death
echo in your chest.

You feel the bite of pain,
the taste of it running
through you.

Following the telling to friends
comes a silence of
felt goodbyes. You come to know
the welling of tears.

Your children are stronger
than you thought and
closer to your skin.

The beauty of animals
birds on telephone lines,
dogs who look into your eyes,
all bring you peace.”

The poem ends with these words:

“You are in a river
flowing in and through you.
Take a breath. Reach out your arms.
You can survive.

A river is flowing
flowing in and through you.
Take a breath. Reach out your arms.”

The poem causes me to reflect on many of the things I’ve lived through, these past three years or so. One of the things I’ve struggled with, off and on, is the question: “Why?” What purpose is there in all this?

Smith’s poem captures the transformational aspect of cancer. When those of us who undertake this journey – however unwillingly – complete it, we are not the same people as when we began. Every step we take along the road changes us.

Thinking theologically, I’m led to ask once again what long-term purpose God may have in mind for my ministry. In allowing me to get this disease, curing me from its aggressive variety, then miring me in the interminable limbo of indolent lymphoma’s “watch and wait,” what’s God’s point? If it’s true, as we Presbyterians are inclined to think, that God calls men and women to ministry, then what call could there possibly be in cancer?

The Larry Smith poem suggests some possible reasons. “You will not live forever.” I have a visceral awareness of this truth, now, that has hitherto been a mere abstraction. “You are not as brave as you once thought.” No, indeed I’m not. I’m learning to live with uncertainty, and still rise to the challenges of daily living. “You can survive.” Yes, I can. I’m doing it. One day at a time.

I’ve had some difficulty sensing God’s will in the midst of follicular lymphoma. Aggressive cancer I can understand: it’s a challenge to be met, or die trying. Cured cancer I can likewise understand: it’s a triumph to be celebrated. But, this neither-here-nor-there, neither healthy-nor-unhealthy limbo, stretching on into the interminable future: what’s God up to?

Maybe the purpose is to nurture my empathy, my ability to connect with others. I’m not the only person whose life is fraught with ambiguity, is lived out in the gray country of uncertainty. Maybe I’m meant to be a fellow-traveler and accompany others. Maybe I’ve been enrolled in a school of perseverance, so I may help others persevere.

January 16, 2009 - Leadership: It's Personal

The recent news about entrepreneur Steve Jobs’ sudden medical leave from Apple Computer brings back memories for me. When you’re in a very public sort of job – like CEO of a company, or pastor of a congregation – there isn’t much of a right to privacy. You’re doing more, professionally, than just filling a box on an organization chart. Personality and profession are all wrapped up together. When you get sick, people feel they need to know.

Steve Jobs has pancreatic cancer. So far, he’s been one of the truly fortunate ones. Not only is he still around, more than 4 years later, but – except for several relatively brief absences – he’s thrived, remaining at the helm of the innovative company he founded. Now, Mr. Jobs has announced he’s taking another, longer leave to see to medical concerns – at least until June.

Apple stock has plummeted. It must be a terribly difficult spot to be in, knowing the stock analysts are watching him like hawks (or vultures?), ready to issue “sell” orders at the least sign of physical weakness. For a man like Steve Jobs, even getting the flu could have a notable effect on his company’s value. The fact that he’s actually stepping down for a time indicates that something is, indeed, seriously amiss.

At least one commentator has issued a call to privacy on his behalf. I agree with that. News reports speculating about the future of the company and the value of its stock are inevitable, I suppose, but it would be nice if the media could find some way to discharge their duty to the public without heating up Mr. Jobs’ life with their spotlights. He needs to find a place of peace and privacy where he can concentrate on healing.

I’m grateful that my congregation gave me such a place, during the acute phase of my illness. I used this blog to let them know how things were going, but that was my choice to do so. This online journal has also been a kind of therapy for me, providing a way to reflect personally and theologically on what’s been happening to me, and what God is doing in my life.

Sometimes I wonder, though, whether certain developments in the life of the church may be attributable to my cancer. As we struggle with issues of membership growth and finances, as nearly all mainline Protestant churches are doing these days, I ask myself whether some of this church’s particular challenges are attributable to my health outlook. Has this become “the church whose pastor has cancer,” in some people’s minds? How does my health situation affect long-range planning? Did the intense focus on my health back when I was receiving chemotherapy – as God’s people ministered to their minister – help or hinder the church’s overall mission in the long run?

These are mostly unanswerable questions. As with families, churches sometimes find they can’t choose or plan for certain eventualities. They have to face whatever comes.

Still, the questions remain in my mind. Leadership is personal – and nowhere is this more true than in ministry.

January 15, 2009 - Retirement Planning

Yesterday, Claire and I returned from Princeton Theological Seminary, where we attended a two-and-a-half-day Pre-Retirement Seminar sponsored by the Presbyterian Church’s Board of Pensions. Not that we have plans to retire anytime soon. That, God-willing-and-the-cancer-don’t-flare-up, is 15 years off at least. We went because the Board of Pensions encourages ministers over 50 to attend one of these conferences, and to bring their spouses with them. The idea is to get a head start on long-term financial planning.

The Presbyterian Church has a mighty good pension plan. It’s fully funded, and conservatively run – something we plan members surely appreciate in uncertain times like these. The sticky wicket, for those of us pastors who live in manses, is where we’ll live in retirement. The Board’s encouraging us to start thinking about the answer to that question now.

Claire and I found it a positive experience. The leadership – especially the financial-planning speaker – was excellent. Just what we budget-challenged liberal-arts graduates needed, even if it did feel odd to be thinking about retirement in our prime working years.

There were 20 or so participants, all told. Ages ranged from people in their early 50s, like us, to one man who’s just a few months from the proverbial gold watch.

My active cancer diagnosis sets me apart from my fellow participants. Will I make it to age 66 and 4 months – the threshold when Americans in my birth year can collect full Social Security benefits? Or, will disability be staring me down sometime before then, as a stem-cell transplant or some other treatment looms? If disability is in my future, will I recover fully after treatment and return to full-time ministry? So many unanswerable questions...

The more time I put between myself and the aggressive large B-cell lymphoma I once had, the more retirement planning makes sense. Indolent NHL is kinder, that way. When Dr. Lerner assures me I could still be doing the watch-and-wait thing years from now, I take him at his word - which is why I can even go to a conference like this in the first place.

Questions like these are, of course, imponderable. The only thing to do is to plan for the best-case scenario, and hope I’m prepared for anything worse that may come my way.

The conference program also included a presentation on maintaining personal health. I’ll be the first to admit I’ve got a long way to go in that area. I’m vigilant about anything cancer-related, of course, but anyone who knows me knows the diet-and-exercise thing is a tough sell. The spirit is willing on that one, but the flesh is weak.

So, Claire and I left Princeton with a lot to think about. One of the benefits of this particular meeting was that it encouraged us in ministry – that most other-directed of occupations – to try thinking about ourselves, and taking care of ourselves, for a change.

Point well taken, Board of Pensions. I’ll try to do better.

January 10, 2009 - Walking the Beam

This past Wednesday, I had a routine appointment with Dr. Lerner. It went as so many appointments have gone before: a port flush and blood draw, then a consultation in one of the examining rooms. The good doctor looked through my chart, listened to my heartbeat and breathing and felt for enlarged lymph nodes in the usual places: on my neck, under my arms and in my groin.

There was nothing to write home about, as they say. No change. More watch and wait.

Dr. Lerner ordered another PET/CT Scan (my last one was in September). I’ll see him again in three months. Should the scan turn up anything unusual, he’ll call and ask me to come in sooner.

“How soon do you think it will be before the cancer’s big enough to treat?” I ask him, as he’s getting ready to leave.

“Impossible to say,” he replies. “This next scan could reveal something. Or, it could be years.” He gives me a little smile, before moving on to the next patient.

I’ve been looking through another of Dr. Wendy Harpham’s books, After Cancer: A Guide To Your New Life (Norton, 1994). I’m not sure if the “after cancer” label applies to me, but I’m surely “after treatment,” so I figure I may find something useful in those pages.

As it happens, I do. Wendy uses the metaphor of a gymnast walking the balance beam:

“Consider an analogy: Most of you could walk the length of a six-inch-wide beam placed on the floor. With the ground just inches away, you would focus on the beam and maintain your balance easily. If this same beam were raised five feet above the ground, most of you would weave and waver, flapping your arms as you tried to maintain your balance before falling off to the side. The beam would be exactly the same, yet the distraction of the ground five feet below would cause you to lose touch with the beam and lose your balance. Gymnasts learn to focus on the beam, not the ground. With practice, they rarely fall. When they do fall, they get right back on the beam. You, as a cancer survivor, must learn to focus on your present life, not on the uncertainties and unknowns of your future. It is a skill that can be learned and must be practiced.” (p. 214)

So, that’s what I’m doing, with all these doctor’s visits that reveal nothing worthy of note. I’m learning a skill.

Is my balance beam close to the ground, or high in the air? Impossible to say. Keep your eye on the beam, Carl. Keep your eye on the beam.

January 4, 2009 - The Last Chapter

The other day I was catching up on my reading, scrolling through the entries on some cancer blogs. On the blog of Mike Dellosso, a published novelist, I came across a short story he wrote, called “The Last Chapter.” (After clicking on the above link, scroll down to the very bottom of Mike's page for the link to his story.) He wrote it, he says, right after his own cancer diagnosis, as a sort of coping exercise.

I find it interesting to read, from the perspective of a cancer survivor. The story’s about a newly-diagnosed man, a construction worker, who learns from his doctor that his cancer is advanced and untreatable. He resolves to end his own life, then some experiences he has lead him to question that decision.

Here’s something Mike writes in another blog entry, dated December 30:

“I learned this: God is good all the time. ‘But how is getting cancer good?’ I have no idea. But I know this. God’s standard of goodness is not the same as ours. His understanding of goodness is on a different plane than ours. He sees things our eyes could never see. Knows things our minds could never even dream of fathoming. His idea of suffering is not the same as ours. He is God and I am not. And in that I have to place my trust.

I also learned this: God will never . . . ever . . . abandon me.”

Like the protagonist in Mike’s story, the news of a cancer diagnosis can shake our lives to their foundations. Most of us – like Mike, and like the man in his story – enter into this crisis and come out the other side, eventually, feeling stronger for the experience.

It’s one of the wonders of this experience called cancer.

“We know that all things work together for good for those who love God, who are called according to his purpose.” – Romans 8:28

January 2, 2009 - Hope Begins in the Dark

It’s a new year. Most of us are very glad to leave 2008 behind, with all the economic turmoil of recent months. May we have much better news in 2009!

There’s some encouraging news already on the cancer research front. A researcher at Cornell University named Michael King has developed something he calls a “lint brush” for the blood – “a tiny, implantable device that captures and kills cancer cells in the bloodstream before they spread through the body.”

This tiny, tubelike device contains a special protein called “selectin” on its inside surface. As blood cells flow through the tube, free-floating cancer cells bond to the selectin and are held there, so they can do no harm. Early test results indicate that about 30% of cancer molecules stick to the selectin on each pass. Since our blood circulates through the body constantly, this means that just one of these devices can eventually filter the body’s entire blood supply. Each repeated pass results in more cancer cells being corralled on the surface of the tube. Then, a second protein is released, causing the cancer cells to die.

I wonder if this device could work in the vessels of the lymphatic system, just as they do in the bloodstream?

Another article tells how scientists are scanning the ocean floor to discover new compounds that can be developed into anti-cancer drugs. The University of California at Santa Cruz has a set-up whereby sea-floor sediment is piped into special, chemical-scanning robots, that analyze them for compounds that could be useful to the pharmaceutical industry.

From the article:

“In its first year of operation, the lab has already had two interesting hits. One, the as-yet-unnamed product of a rod-shaped marine bacterium, is 98 percent efficient at killing the parasite that causes African sleeping sickness, a fatal disease common in sub-Saharan Africa. The other, dubbed ‘tamoxilog,’ is biologically similar to tamoxifen, a drug commonly used to treat breast cancer, though preliminary tests suggest tamoxilog is twice as powerful.”



Maybe the next big lymphoma drug is at the bottom of the sea, waiting to be discovered. Stranger things have happened.

Christian essayist Anne Lamott has written: “Hope begins in the dark, the stubborn hope that if you just show up and try to do the right thing, the dawn will come. You wait and watch and work: you don’t give up.”

I doubt if Anne was thinking about the inky darkness of the ocean floor when she wrote that. Her words are oddly appropriate, though: for this is surely a story of hope that begins in the dark.

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.

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.

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)

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.

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.

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.

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.

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.

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.

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.