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.