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, 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 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.