August 3, 2010 - Clinging to the Tail of Possibility

On vacation in the Adirondacks, I read a remarkable article from the August 2 New Yorker magazine. I was tipped to the article by my brother, Jim – though I later learned from Claire that members of her hospice team have been passing it amongst themselves, causing lively discussion in their weekly staff meeting.

I think “Letting Go: What should medicine do when it can’t save your life,” by Atul Gawande, may set off at least as much debate as his June 1, 2009 article, “The Cost Conundrum: What a Texas town can teach us about health care.” (which I discussed in a July 20, 2009 blog entry, “Where Not to Get Sick.”)

Gawande is a general surgeon who practices at Boston’s Brigham and Women’s Hospital, and who teaches at Harvard Medical School. He’s operated on a lot of cancer patients. Some benefitted mightily from his expertise, and others’ last days would likely have been more tolerable without the invasive procedures. Yet, hindsight is always 20/02, and ahead of time it’s always a tough call.

It’s his physician’s perspective that leads Dr. Gawande to question the lack of agreed-upon procedures for end-of-life decision-making in America. For a country with some of the most advanced medical care in the world, our practices in this area are remarkably haphazard.

Gawande points out that the financial costs of successful cancer treatment can typically be graphed as a bell curve: there’s a steep climb from the time of diagnosis to a sort of plateau, as very expensive scans and treatments are deployed. Then, there’s a drop-off in costs as the patient recovers. In the case of patients whose treatment is unsuccessful, the frequent result is half a bell curve. We throw some very big money at solving problems that are – statistically speaking – unlikely to be solved, sending the line of the graph soaring upwards. Because it’s a human life at stake, doctors typically follow the lead of patients and their families, ordering such last-ditch treatments if that’s what they want. In many such cases, the patient dies anyway, often after many days, or even weeks, of intensive care. If the ICU stay is long, those days can end up costing as much as – sometimes even more than – the cancer treatment itself.

These are agonizingly difficult decisions, some of the toughest in medicine. When to pursue extraordinary, experimental treatment? When to throw in the towel and admit that maintaining a reasonable quality of life for the patient whose health is in a tailspin is more important than the increasingly quixotic search for a cure?

Gawande remarks that nearly all categories of dying patients and their families – with one exception – are ill-prepared to wrestle with such complex, emotionally fraught decisions. When, as too often happens, everyone’s energies are single-mindedly fixed on the search for a cure, doctors fail to raise the what-if question of death at all. It seems to them premature. Yet, when that likelihood suddenly looms large, and quick decisions have to be made about such interventions as feeding tubes and ventilators, patients and families scramble to wrap their minds around the new state of affairs. Unable to achieve unanimity, a great many families fall back to the default position, which is to press on relentlessly in search of a cure – even though the doctors may know, full well, that chances of extending such patients’ lives by more than a few weeks are slim.

Granted – as Claire reminds me, based on her hospice ministry experience – there are some cultural and ethnic traditions that inform this process. Orthodox Jews, for example, typically make decisions within a moral framework that nearly always opts for treatment, no matter what the chances of success. African-Americans and Hispanics, bearing cultural memories of parents and grandparents to whom the system too often denied advanced care, are more likely than others to press for it, even against medical advice.

Referring to science writer Stephen Jay Gould’s oft-quoted 1985 essay, “The Median Isn’t the Message” – in which Gould tells the story of how, upon learning he had mesothelioma, he decided to take his place among the tiny percentage of patients who survive, and did – Gawande speaks of the “tail” of the statistical curve. That’s the narrow portion that stretches a good distance into the future, and includes the fortunate few patients who manage to beat the odds and survive a deadly cancer. It’s good to remember, when faced with such stories, that the statistical median is just that – a median. Always, there are some who do better than clinical expectations, others worse. An awful lot of people, though, are trying to ride the tail of statistical probability – far more than will end up actually being on it. Gawande writes:

“I think of Gould and his essay every time I have a patient with a terminal illness. There is almost always a long tail of possibility, however thin. What’s wrong with looking for it? Nothing, it seems to me, unless it means we have failed to prepare for the outcome that’s vastly more probable. The problem is that we’ve built our medical system and our culture around the long tail. We’ve created a multimillion-dollar edifice for dispensing the medical equivalent of lottery tickets – and have only the rudiments of a system to prepare patients for the near-certainty that those tickets will not win. Hope is not a plan, but hope is our plan.”

I mentioned above that Gawande identifies one category of patients and their families who are better prepared for end-of-life decision-making. He’s talking about those who have received hospice services. Alone among the specialties of modern medicine, the hospice movement is not afraid to face death head-on and talk about it with patients – well before the anxious moment in the little family waiting room just off the ICU, when a doctor (or, just as likely, a critical-care nurse) sits down on the vinyl-covered furniture with the family and informs them a decision needs to be made about discontinuing life-support.

Patients who have signed on for hospice care have already decided they’re not going to cling to the slim tail of possibility any longer. They’re going to strive for the best quality of life they can construct in the here-and-now, placing their hope somewhere other than joining the tiny percentage who defy medical expectations.

I can’t begin to recall the number of grieving family members I’ve spoken with who told me they wished their loved one had gone on hospice earlier. Claire confirms for me, from her experience working with bereaved family members, that this is a nearly-universal comment. Curiously, the vast majority of hospice patients live no longer than a few days. That’s not because hospice care is somehow bad for them – quite the opposite. It’s because, by the time most patients make this decision, they’re already so far gone that hospice functions as little more than a transfer-station between the hospital and the funeral home.

It’s not meant to be that way. The hospice ideal is for weeks or even months of active, but mostly palliative, treatment. The hope is that the hospice experience will provide a gracious space for patients and their families to work through the full range of issues – medical, emotional, spiritual – they need to deal with at the end of life. Surprising as it may seem, there are even some patients who go on hospice for a time, then go off it – their improvement has been such that the “six months or less to live” criterion of hospice admission no longer applies to them.

So, signing up for hospice care is not giving up, as some fear. Far from it.

The key to a higher quality of life for the dying, Gawande points out, is communication. One of the things hospice team members do exceptionally well is to encourage patients and their families to share their thoughts and feelings about dying, then to listen attentively and respectfully to what they say. Next, they help them think through what goals they have for the rest of their lives, and do whatever they can to help them attain them. “You don’t ask, ‘What do you want when you are dying?’” explains one expert. “You ask, ‘If time becomes short, what is most important to you?’” Gawande observes:

“People die only once. They have no experience to draw upon. They need doctors and nurses who are willing to have the hard discussions and to say what they have seen, who will help people to prepare for what is to come – and to escape a warehoused oblivion that few really want.”

The asking of such questions was meant to be a central part of the new health-care legislation recently passed by Congress, but politics blocked it. The Tea Party mob ignorantly slapped the label “death panels”on the funding for these vital conversations, then pressured Congressional leaders to excise it from the bill – which they did, so as not to lose the bigger battle. This is a terrible miscarriage of justice for the dying: the sacrifice of a proven care approach that offered real promise for enhanced quality of life.

When the only goal worth talking about is to beat the disease, Gawande concludes – no matter what that may mean in terms of unproven, experimental treatments – the statistical outcome in nearly every case is going to be disastrous. Which general would you rather have leading the troops into battle? George Armstrong Custer or Robert E. Lee?

“Death is the enemy. But the enemy has superior forces. Eventually, it wins. And, in a war that you cannot win, you don’t want a general who fights to the point of total annihilation. You don’t want Custer. You want Robert E. Lee, someone who knew how to fight for territory when he could and how to surrender when you couldn’t, someone who understood that the damage is greatest if all you do is fight to the bitter end.”

This article is a good read, for anyone whose life has been touched by cancer – either their own or that of a loved one.

July 13, 2010 – Bendamustine Rising

Thanks to Betsy DeParry of the Patients- Against-Lymphoma group on Facebook, for posting excerpts from an article about Bendamustine in the treatment of indolent NHL.

Bendamustine (trade names Treanda, Ribomustin) is a chemotherapy agent that’s been around for decades. It was developed in East Germany during the Cold War, which is perhaps why it was slow to catch on in the U.S. and Western Europe. It’s receiving a lot of attention these days as a treatment option for NHL, either in conjunction with Rituxan or on its own.

The full article is found in the issue of the American Journal of Health-System Pharmacy (2010; 67: 713-723). Authors are Anjana Elefante, Pharm.D., B.Sc.Phm., Clinical Pharmacist, Department of Pharmacy; and Myron S. Czuczman, M.D., Chief, Lymphoma/Myeloma Service, Department of Medicine, Roswell Park Cancer Institute, Buffalo, NY.

Here are some excerpts from Betsy’s excerpts:

“Bendamustine is an alkylating agent that has a unique, multifaceted mechanism of action. Compared with other alkylators, bendamustine produces more-extensive and long-lasting DNA damage. Bendamustine also inhibits cell-cycle checkpoints, leading to mitotic catastrophe and apoptosis.”

Sounds pretty dire, eh? Well, the “DNA damage... mitotic catastrophe and apoptosis” is actually referring to cancer cells, so that’s not such a bad thing.

“Bendamustine is approved for the treatment of CLL and for indolent B-cell NHL that has progressed during or within 6 months of treatment with rituximab or a rituximab-based regimen. In Phase II and III trials in patients with indolent NHL and CLL, bendamustine has demonstrated response rates of 67–84% as a single agent and median durations of response of 7–21 months. Additional clinical trials are examining bendamustine as a single agent and in combination therapy for the treatment of hematologic malignancies and solid tumors. Adverse events associated with bendamustine are typically mild to moderate and can usually be managed with supportive care.”

Sounds pretty encouraging.

“NHL is the most common hematologic cancer and the sixth most common cancer in the United States, with an estimated 65,980 new cases and 19,500 deaths occurring in 2009. The histological subtypes of NHL fall into two major classes: indolent (slow growing) and aggressive (fast growing). Lymphomas with indolent histologies include B-cell follicular lymphoma, marginal zone lymphoma, small lymphocytic lymphoma, and cutaneous T-cell lymphoma. Lymphomas with aggressive histologies include diffuse large B-cell lymphoma, lymphoblastic lymphoma, and Burkitt lymphoma. Mantle cell lymphoma is classified as an aggressive lymphoma but possesses characteristics of both indolent and aggressive disease.

Treatment of indolent NHL depends on the histology and stage of the disease. Because indolent NHL is often asymptomatic in early stages, it is generally advanced (stage III or IV) at the time of detection. Treatment for indolent NHL typically involves a combination of chemotherapy and immunotherapy, such as cyclophosphamide, doxorubicin, vincristine, and prednisone (CHOP) plus rituximab. Alternatively, other chemotherapy regimens may be used in combination with rituximab, including cyclophosphamide, vincristine, and prednisone and fludarabine-based regimens. Radiation and bone marrow or stem cell transplantation are treatment options in selected patients.

Indolent NHL is generally incurable. Patients typically follow a course of remission and relapse requiring multiple rounds of therapy with rituximab, chemotherapy, or both. Eventually, most patients become refractory to chemotherapeutic agents, rituximab, or both.[20] Therefore, new treatments are needed to prolong the duration of remission and overall survival for patients with relapsed and refractory indolent NHL.

Bendamustine is useful in that it shows little cross-reactivity with common first-line indolent NHL therapies. It is effective in patients refractory to rituximab, chemotherapy, or both...”

What about side effects?

“Bendamustine is generally well tolerated. The most common serious (grade 3 or 4) adverse events are hematologic in nature. Gastrointestinal events are also commonly observed but are usually mild to moderate in severity. Adverse events can often be managed with supportive therapies or dosage modifications.”

Translation: like other chemotherapy agents, it can throw your blood counts out of whack and it can make you vomit. Yet, they say these side effects can be pretty much kept under control with other drugs.

In the oncologist’s lexicon, “well tolerated” doesn’t mean you feel good. It means the doctors don’t usually have to cancel the chemotherapy because it’s making you so sick you can’t stand it.

In any event, this is another bit of encouraging news for me, for whenever it should happen that “watch and wait” ends and “go and do something” begins.

It’s good to have more than one arrow in the quiver, to be sure.

Necrology

This week I'm attending the Presbyterian Church's General Assembly in Minneapolis. I'm blogging about it on my Monnmouth Presbytery Clerks' Corner blog.

Yesterday was the opening worship service, with several thousand people in attendance at the Minneapolis Convention Center. At one point in the service, it was announced that the Necrology Report would be presented, in the form of a list of names projected on the large screens over our heads.

"Necrology" is an odd word, but to those who frequent Presbyterian official meetings above the local level, it means a report of recent deaths. The General Assembly's Necrology Report is a list of ministers who have died during the previous two years, since the Assembly last met.

Flashing the names up on the screen was a creative way of presenting this information, without having to go through the tedious exercise of reading the list aloud. As we listened to some wonderful music, I scanned the names as each page was put up there, to see if there were any I recognized - any honored members of the older generation.

Bam! There was a name I recognized, but not from the older generation. It was Karen, a seminary classmate with whom I had worked side-by-side for a couple of years after we graduated, when we were both associate pastors. She died in a freakish accident: a burst blood clot in her lung, while she was on a high-altitude hiking trip. By the time the mountain-rescue team got her back down the mountain, it was too late.

Then there was Carter's name. I had never met her in person, but she and I were on the writing team for The Immediate Word, an internet sermon resource for preachers. Every week, we would speak via conference call, as the team planned the next installment. She had died suddenly of a massive heart attack.

In my mid-50s, I'm at the stage of life when I can expect to hear about this sort of thing more frequently - members of my generation who are dying.

I was very much aware of the fact that, with my cancer experience, I could very well have been numbered in that company. What would others have thought as they saw my name flashed on the screen, I wondered?

We cancer survivors have to deal with ever-present reminders of our mortality. To us, they take on a meaning that I suspect is very different than those who have always enjoyed good health.

June 7, 2010 - Is Google Making Us Ignore God?

Came across a thought-provoking article today by Ernesto Tinajero on Sojourners Magazine’s “God’s Politics” blog. It's called "Is Google Making Us Ignore God?"

Here’s an excerpt:

“God calls on us to meditate on God and God’s word. However, does the fast intake of information from TV, film, and especially the Internet make us less likely to experience God? According to new research, electronic gadgets actually change how we think and focus. Nicholas Carr famously asked ‘Is Google Making Us Stupid?’ Will it also make us ignore God?...

The theological perspective is that this busyness of the business of modern life draws us into the world of Martha and away from sitting at the feet of Jesus. We are being called to distraction, and the quiet, still voice of God goes unnoticed – unnoticed in the flood of ever new links to follow, unnoticed in the hectic pace of modern life, unnoticed in the flood of events, information, and distractions. Through it all, God continues to call us to sweet voice of prayer. Yes, the call I am heeding –returning to simplicity and healthier life – may seem too simple to make a difference. Yet, does it make it any less true?”

I wonder what the implications of this 24/7 deluge of distractions are for our immune system, and for the cancers like lymphoma that sometimes beset it?

Judaeo-Christian religion has a time-honored solution: it’s known as sabbath. Periodically creating for ourselves islands of spiritual peace – places and times for encountering the divine – ought to be central to any long-term program of recovery.

June 6, 2010 - Our Most Elusive Possession

Great column a couple days ago, from New York Times columnist Nicholas Kristof. Instead of gallivanting around Africa or someplace crusading against injustice, as he often is, his June 4th column is very personal.

That’s because he’s had a cancer scare: diagnosis of a kidney tumor 90% likely to be malignant, then surgery – and then, against the odds, a biopsy revealing he’s in the lucky 10%. The tumor was benign.

Still – and understandably – Nicholas had a scare, that led him (as cancer has led so many of us) to examine his life a little more closely. Here’s the result:

“This is trite but also so, so true: A brush with mortality turns out to be the best way to appreciate how blue the sky is, how sensuous grass feels underfoot, how melodious kids' voices are. Even teenagers' voices. A friend and colleague, David E. Sanger, who conquered cancer a decade ago, says, "No matter how bad a day you're having, you say to yourself: `I've had worse....’

I don't mean to wax lyrical about the joys of tumors. But maybe the most elusive possession is contentment with what we have. There's no better way to attain that than a glimpse of our mortality.”

Preach it, brother!

A few verses from the First Letter to Timothy come to mind:

"Of course, there is great gain in godliness combined with contentment; for we brought nothing into the world, so that we can take nothing out of it; but if we have food and clothing, we will be content with these."

- 1 Timothy 6:6-8

June 3, 2010 - Touched By an Angel

“During my illness, I had the presence of an angel that came and visited me...” This is a remarkable video, from the Livestrong website. The speaker is Matthews Brown, a leukemia survivor. It’s just under 4 minutes long, so it won’t take too much time away from whatever else you’re doing.



In the course of my ministry, I’ve heard some remarkable stories of spiritual experiences. I’ve never seen an angel, myself (at least, not the supernatural variety). Based on what I’ve heard from others, though, I’d say Matthews’ experience is unusual, but not as unusual as all that. Things like this happen to people more often than you may think.

We’ve all heard the truism, “God never gives us more than we can handle.” I found that to be true of my own cancer experience. From the square marked “Go,” it looks like it's a long way around the spiritual Monopoly board, but you do find yourself “passing Go” from time to time and collecting $200.

Let us give thanks for unsolicited, grace-filled experiences, through which we learn what remarkable spiritual resources are available to us, and how deeply we are loved!

If you’re a cancer survivor, how has the spiritual side of the experience been for you?

May 16, 2010 - What To Say or Do When a Friend Gets Cancer

Here’s a helpful video clip from the Today Show, featuring Lori Hope, author of the new book, Help Me Live: 20 Things People with Cancer Want You to Know:

Visit msnbc.com for breaking news, world news, and news about the economy

When I was sick, I was so fortunate to have so many friends from the church bring over food for the family. We never got tired of those gestures, repeated every other day or so for months. It wasn’t an economic thing; it was a way of giving us time with each other.

Of the clueless comments cited by survivors in the video clip, the one I remember hearing is “I know exactly how you’re feeling.” To me, that’s probably the number-one thing not to say. I’s meant to be a helpful comment, but it’s so patently untrue. Every person’s journey is different. Sure, there are points of commonality, but we do well to respect each other’s differences.

I also remember people quizzing me about what I might have done that brought on cancer. Is there any dietary or environmental link that leads to lymphoma, they wanted to know. I figure these comments had more to do with the person making them than with me. They saw what I was going through, and they were trying to reassure themselves that the same thing wasn’t likely to happen to them.

I do have to confess, though, that when I hear of someone diagnosed with lung cancer, I really have to refrain from asking if the person ever smoked. Maybe it’s a carryover from my experience with my father, who died of smoking-induced emphysema complicated by lung cancer. I want to reassure myself I’m not a risk.

Whether the loved one persisted in unhealthy, cancer-causing behaviors is neither here nor there. Such a question has nothing to do with begin supportive. It’s more an attempt to satisfy our own morbid curiosity, and to allay our irrational fears. So, I really work hard to avoid asking that one, myself.

April 20, 2010 - Hope IS a Miracle

This past Sunday, I preached on the story from the Acts of the Apostles about the raising of Tabitha. It’s one of a small number of biblical passages that recount not merely a healing, but the raising of a person from the dead. Although the Apostle Peter performs the miracle, it’s clear he sees it as the work of the risen Christ.

Preparing my sermon, I was struck by a rather unusual detail. Before performing his miracle, Peter cleared the room. Why was that?

I figure it was because Peter was none too sure of his ability to do anything helpful. This isn’t a sick woman, he thought to himself. It’s a dead woman. Dead is dead (unless, of course, you’re talking about Jesus’ resurrection, but that’s a story for another day).

You’d think, had Peter been more confident, he’d have practiced a little showmanship. You know, given the miracle some pizzazz. Wow the crowd.

But, no. Peter will have none of that.

When in doubt, pray. Having no other option, that’s what Peter decides to do. Falling to his knees, he offers fervent prayers to God: to get him out of this situation, to do something to help this grieving community – and, yes, even this poor, deceased woman, wherever in heaven or earth her soul may be.

After praying, Peter turns to Tabitha and simply says, “Tabitha, get up.” She does! The crowd outside is astounded when they see their beloved Tabitha, alive again. It just may be, though, that the most befuddled person in the village that day is Peter himself.

Many of us have been there before, in situations that seemed hopeless. It’s a story repeated time and again, in hospital corridors and family waiting rooms, as a doctor says to an anxious family, ”I’m sorry, there’s nothing more we can do.”

We’ve all heard of deathbed miracles, of course, but we also know these are few and far between. I told the folks in church on Sunday that the one miracle I have seen, time and time again, is how hope – that most persistent of Christian character traits – has a way of arising out of even the darkest of situations.

Sometimes that hope is as simple as being able to persevere, to get up and face another day without falling apart emotionally. Sometimes it’s the ability to let go and die with dignity. Sometimes it’s reconciliation with a loved one that we never imagined could have happened.

On his knees, alone in that small room except for the corpse stretched out on the bed, Peter may have feared his hope-reservoir had run dry. But then, when he least expects it, God breaks in once again, revealing new possibilities.

Such hope differs from what usually passes for hope in our culture – at least, as the word is used in everyday speech. Eugene Peterson points out that what a lot of people call hope is in reality something different. It’s wishing, not hoping – and wishing and hoping are not the same thing:

“Wishing is something all of us do. It projects what we want or think we need into the future. Just because we wish for something good or holy we think it qualifies as hope. It does not. Wishing extends our egos into the future; hope grows out of our faith. Hope is oriented toward what God is doing; wishing is oriented toward what we are doing.”

Peterson goes on to say that we can picture wishing as though it were a line coming out from us with an arrow on the end, pointing into the future, pointing toward that thing we most want to possess.

Hope is just the opposite. It’s a line that comes from God out of the future, with its arrow pointing towards us:

“Hope means being surprised, because we don’t know what is best for us or how our lives are going to be completed. To cultivate hope is to suppress wishing – to refuse to fantasize about what we want, but live in anticipation of what God is going to do next.” [The Contemplative Pastor: Returning to the Art of Spiritual Direction (Eerdmans, 1993)]

To me, that’s a beautiful and liberating insight. Yes, we all want certain things in this life. Yet, our wishes and God’s intentions for us may not always coincide. At times, God may have an entirely different plan – which means that, for us, the way of freedom and peace lies not in somehow pulling God around to our way of thinking, but rather letting go and trusting God to be in control.

April 13, 2010 - Cancer Concern Center Article

An article in today’s Asbury Park Press has some nice things to say about the Cancer Concern Center, a local organization that provided help to me at one of my lowest points, as my chemotherapy was coming to an end.

Until that time, I’d been toughing it out, turning to no one other than God and my family for support. The night I ventured down the street, to the rented commercial office space where the Cancer Concern Center support groups hold their meetings, was a revelation.

I felt less alone in what I was experiencing. Others had been there, too, and were more than willing to offer support and advice. There was concern – as promised in the organization’s name – but also friendship and even laughter.

From the article:

“The Cancer Concern Center, now in its 13th year, provides weekly support meetings, meditation and yoga classes, massage and Reiki therapy, nutritional workshops and new wigs to local residents. All the work is done by a volunteer staff, and all donations go to client programs.

‘Everything we do here revolves around the women and men who have the courage to walk through our front door,’ said Lisa Montalbano, volunteer office manager at the Cancer Concern Center. ‘We keep cancer survivors from slipping through the cracks of depression and despair.’”

So true.

There are other support-group providers with a national profile, like The Wellness Community, that have meant a lot to me as well. This is a local, home-grown organization. Here in Point Pleasant Beach, we're proud of what they do.

April 5, 2010 - An Idle Tale?

Preparing my Easter sermon based on Luke 24:1-12, I was struck by the reaction of the male disciples to Mary Magdalene and the other women who brought them news of the empty tomb and of the angel’s message: “Why do you seek the living among the dead? He is not here, but has risen.”

Their first response was to consider it “an idle tale.”

“Idle tale” translates an uncommon Greek word whose meaning is “nonsense” or “delusional.” If the women’s breathless announcement is in fact the first Christian proclamation, then it means we preachers started out with a score of 0 and 1 from the get-go.

Which is no big surprise – because the resurrection isn’t exactly an easy truth to absorb. In contradicts one of the most foundational of human experiences: that dead is dead, and there’s no coming back.

I thought about that sort of thing a lot when I was feeling ill from my chemo treatments. What if the treatments were unsuccessful and I was soon going to die, I asked myself? What if, someday soon, I was going to shut my eyes not only to this world, but to everything else? What if this life, this consciousness, that is me would suddenly blink out of existence? What would have been the point of it all?

My mind danced with that bleak idea from time to time, but didn’t invite it home. I kept returning to the truths of my faith, and especially this truth that is the resurrection.

I told the folks in our church yesterday that this whole “idle tale” response is actually a sort of backhanded testimony to the truth of the resurrection. If you were to set out to make up a story about a man being raised from the dead, would you be so quick to admit that some of the people who most wanted to believe it to be true rejected it, at first?

Similarly, if you were going to go out and make up a story about a man being raised from the dead, would you include details that made you, yourself look like a clueless doubter – as was the case with Peter? If you were interested in spreading a made-up story in the intensely male-dominated Roman world, would you make women the first witnesses of the resurrection – women, who were considered, back then, to be second-class citizens, whose testimony the male-dominated society considered unreliable?

Of course not. There are an embarrassing number of loose ends connected with the Easter narrative. Four different gospels tell the story, as well as certain passages from the letters of Paul – all of them differing from the others in one detail or another. If your purpose were to make the whole thing up, you would have managed your sources a little better.

The result is that it’s impossible to put the various Gospel accounts together in a single narrative – just as it would be if there had been multiple witnesses recording their impression of a single, dramatic incident, each from a different angle.

The resurrection is jarring and unexpected. The great Reformed theologian Karl Barth says somewhere that it’s “not a natural ‘therefore’ but a miraculous ‘nevertheless.’” Archbishop of Canterbury Rowan Williams – a distinguished theologian as well as senior leader of the worldwide Anglican Communion – likens it to the Big Bang. When we celebrate Easter, he writes, “we are really standing in the middle of a second ‘Big Bang,’ a tumultuous surge of divine energy as fiery and intense as the very beginning of the universe.” (Tokens of Trust, p. 95)

These are outrageous claims – but in their very confusion, contradiction and sheer outrageousness, they’re true to life, in an odd way. Such a mind-bending, paradigm-busting event could never be encapsulated in a tight, little spin-controlled story.

With all those lights of inquiry shining upon it from so many different angles, the resurrection is like a person moving across a room, lit up by a strobe light. You know how that looks: a person lit by a strobe seems to move in a series of jerky, disjointed snapshots, rather than the seamless, smooth motion of movie film. Under such lighting, you can get a general sense of what’s happening, what various events are taking place – but not how they flow from one to the next.

There are still significant gaps in our understanding of the resurrection – and always will be, this side of heaven. That doesn’t mean it’s not true. It means it’s a truth too big, too complex, too wonderful for us to fully comprehend.

April 3, 2010 - When All You Have Left Is Yourself

Today I’m reading an unusual article in Cure magazine online, "Keeping the Faith," by Kathy Latour. What’s unusual about it is that it deals with the topic of cancer and spirituality with attention to spiritual community.

I find that refreshing, because there’s lots of talk about a sort of generic spirituality when it comes to cancer survivorship. “If it makes you feel good, do it” is the all-purpose mantra. The problem with this sort of approach is that it ends up being a do-it-yourself activity, like trimming your nose-hairs or working out with a Thighmaster.

I think this individualism comes out of good old American separation-of-church-and-state thinking – something I’m in favor of when it comes to politics, but which is woefully inadequate in all but the most superficial discussions of religious faith. Take that line of thinking to its extreme, and you’ll end up like poor old President Eisenhower – who supposedly let himself be quoted saying: “Our government has no sense unless it is founded in a deeply felt religious faith, and I don’t care what it is.”

Some presidential scholars insist that’s an apocryphal remark, and it may well be – but, it catches the spirit of the age. (Eisenhower was a Presbyterian, by the way – though, if he really said that, I suppose he missed Sunday School the day they were teaching Calvin’s high conception of the church.)

In cancer support groups, “guided meditations” abound – those stress-relieving exercises that begin: “Close your eyes, pay attention to your breathing, and imagine yourself walking across a grassy field...”

Now, I can understand the appeal of that approach, to those who arrange chairs in a circle for their cancer-and-spirituality workshops. You can be Christian, Muslim, Buddhist, Jew or South Sea Islands cargo cultist, and still get something out of a guided meditation exercise. Whether the glowing figure walking towards you across that grassy field is Jesus or the Bodhisattva Maitreya makes little difference, because it’s happening in your own, private mental world. No muss, no fuss, no cross-denominational misunderstandings. Everybody leaves happy.

Outside of houses of worship, spiritual support groups are often led by people without any strong (or strongly evident) religious affiliation – the “I’m spiritual but not religious” sort of person. You’d think hospitals and agencies would seek out seasoned religious professionals – nuns who work as spiritual directors, say, or Muslim teachers of Sufi prayer – as long as they’re committed to interfaith dialogue. But, no. Charitable-organization program directors aren’t known for sticking their necks out, so they smile beneficently on psychiatric social workers with no theological background who say, “I can do that,” or on generic “interfaith ministers” holding degrees from unaccredited seminaries (or, God forbid, even internet “ordinations”).

That’s why the article I’ve been reading is so refreshing. The author, Kathy Latour, interviews Harold G. Koenig, M.D., of the Center for Spirituality, Theology and Health at Duke University – a prostate-cancer survivor himself – as he describes a discussion group he co-facilitated called “Engaging the Spirit.” It was a place “where cancer patients and survivors explored spiritual and faith questions as they traveled the cancer journey.” Knowing his group was composed of people from a variety of faith traditions, Harold began each discussion with a simple question: “How’s your spirit?”

OK, that’s a workable generic opening question, but Harold’s point is that the discussion need not remain in that level: “I learned from those who took part that no matter how someone defines his or her faith, in a group of cancer survivors there exists a common quest to understand existential questions about life and death.” When that quest is pursued through religious community, there comes an awareness that “God has a purpose for them and is in control and they don’t have to be. This is where mental health comes from.” Such a strongly-held conviction, the article continues, “frees them and reminds them that their illness can result in ‘something good.’”

From his own experience as a survivor, Harold upholds the value of “a belief system that frames your diagnosis in the context of your life and what you believe happens after life. If you have no framework to place that in, all you have left is yourself and it isn't enough. You can't carry the full load – you weren't meant to.”

A great many recent research studies of spirituality and health, Harold maintains, conclude that people who follow a particular faith tradition “need and use fewer health care services because they are healthier, more likely to have intact families to care for them, and have greater social support.”

The Rev. Isabel Docampo, associate professor of supervised ministry at Perkins School of Theology, “says her fear and depression after facing surgery for life-threatening cancer of the salivary gland came not from a crisis of faith, but from the pain and sadness that she felt from the idea she might leave her 21-year-old son, Ben, and her husband of 18 months, Scott Somers, also an ordained minister.”

“The way I have always looked at life is that it is what it is,” Isabel reflects. “Life is a struggle and God has been there for all the blessings and all the bad stuff, and God is going to be here for the cancer.”

Amen to that.

I wouldn’t want to face cancer knowing that “all I have left is myself” – nor some individualized spirituality I’d made up out of whole cloth, either. One of the great strengths of submitting oneself to the discipline of a particular religious tradition is knowing it’s not all about me, nor will it ever be so.

Now, on to my Easter sermon...

March 29, 2010 - Survivors' Tips from Dr. Laura Liberman

When I attended the Lymphoma Research Foundation’s national meeting in New York last fall, one of the most helpful presentations I heard was by Dr. Laura Liberman, a radiologist on the staff of the Memorial Sloan-Kettering Cancer Center. Dr. Liberman spoke not so much as a physician, but as a cancer survivor. She herself has been successfully treated for lymphoma.

She evidently gave the same talk again at a more recent event at MSKCC, and they’ve posted an online video of it. It’s just 30 minutes long, and is well worth it.

Laura’s experience was, like mine, one of tables being turned. As a pastor, I’ve visited with many cancer patients, and have tried to give them what help I could. She and I both found it disorienting, at first, to assume the role of a patient. In fact, the title of Laura’s book is I Signed As the Doctor – the first several times she signed consent forms for medical procedures, she made the mistake of signing on the line marked “Doctor,” rather than “Patient.”

Here are Dr. Laura Liberman’s cancer survival tips, a baker’s dozen:

1. Reach out to your friends.
Some people can’t deal with your cancer (it’s not in their nature), but many will be grateful for the opportunity to step up and help.

2. It’s OK to cry, but try to keep it to 20 minutes a day or less.
This is no joke. An oncology nurse gave her this advice. Laura actually found it helpful to try to fit her crying into that period of time (20 minutes at a stretch, four 5-minute crying jags, whatever worked). I didn't do much crying myself, being the typical male in our culture, but I appreciate the importance of giving ourselves permission to feel sad.

3. Ask people to pray for you.
Laura’s of the opinion that prayer, from any and all religious traditions, is a good thing. If nothing else, you may receive a sense of positive energy coming toward you, and it allows friends want to do something to help you who may have no other way to do so.

4. Find doctors you can trust.
You don’t want Dr. House from TV, she says. You want someone who’s empathetic as well as technically skilled

5. Take it bird by bird.
A literary reference to Anne Lamott’s book of that title. Lamott tells the story of how her brother was frustrated at the magnitude of his grade-school report assignment on “The Birds of North America.” Their father gave him the sage advice to “take it bird by bird.” So, too, with cancer. The big picture can feel overwhelming, especially at the outset. Take it one medical procedure at a time.

6. Be sensitive to your family.
Be honest with your kids, but don’t overwhelm them with more information than they can handle. Make sure your kids know you will still be there for them.

7. Be your own advocate.
Do your own research. Bring someone with you on doctor’s visits – not only to help you advocate for yourself, and also to listen for details you will probably miss. Laura suggests “bringing your own anesthesia” – not the big stuff you need an anesthesiologist for, of course, but she sings the praises of something called Gebauer ethyl chloride, a topical application you can get at the pharmacy with a prescription. The stuff numbs the skin; it’s what they spray on kids’ skinned knuckles in the emergency room. Emla Cream, she says, is also useful, though you have to apply it a half-hour before. Not every doctor, she says, is alert to the value of preventing minor pain, like that of a needle insertion, with such topical preparations. Bring the stuff with you, though, and the doctor’s unlikely to object.

8. Find silver linings (it’s an opportunity to get new hats!).
Laura says she indulged herself, when she was losing her hair, by buying herself an embarrassing number of fashionable new hats. People want to say “You look great,” she points out – but when they can’t, you can always ask them, “Do you like my hat?”

9. Discover your inner Zen.
By this, she means whatever it is that brings you to a place of inner peace. There’s an awful lot of waiting associated with being a cancer patient, and all that downtime can lead to excessive worrying. One friend advised her to pretend each doctor’s visit is a trip to the airport – if you don’t have to wait that long, you’ll be pleased. Get an iPod, she also advises – so you can listen to music during all those waiting experiences. Putting songs onto your iPod is something teenagers can do for you.

10. Keep your sense of humor.
Nothing about cancer is a joke, but if you can focus on things that make you laugh, that’s a good thing.

11. Play the cancer card.
Every once in a while, it helps to mention that you have cancer. Sometimes people will give you special consideration (she’s got a good story about this on the video about getting a cab in New York).

12. Savor celebrations. It’s not all about the cancer!
Celebrations are important at any time of life, but especially when you’re sick. “The way you make life good is by incorporating good stuff into it.”

13. Use your experience to help others.
Give back, pay it forward, or whatever you like to call it. This can help you feel you’re going through this experience for a reason

Good advice. Check out the video!

March 27, 2010 - Post-Traumatic Growth

Well, well. Here’s a new psychobabble buzz-word: post-traumatic growth.

OK, it’s more than just one word, it’s a couple. It echoes the dreaded “post-traumatic stress disorder” (PTSD), although it ends up being a good thing, not a bad. Mostly, anyway. To get to the good, you have to slog through some pretty rough stuff.

I read about post-traumatic growth in an article, “Cancer’s Silver Lining,” by Don Vaughan, in CureToday.com. The author lists “five common growth outcomes” of being a cancer survivor:

• A deepened appreciation of life.
• Enhanced relationships with others.
• An appreciation for personal strength and endurance.
• Setting out on new pathways or pursuing new interests and opportunities.
• Spiritual growth and development.

I’d have to say – with no trace of bragging in my mind, just gratitude – that I’m 5 for 5 on that list.

I didn’t achieve any of those things myself. They’ve been gifts.

Cancer’s not an experience I’d wish on anyone. But if you have to get it, you may as well make the most of it. As I wrote in a much earlier post, try to emulate Jacob as he wrestled with that mysterious adversary of his at the fords of the Jabbok. See if you can put your scary opponent into a half-Nelson until he dispenses a blessing or two.

March 8, 2010 - Hope on the Horizon

The big medical conference each year in the field of lymphoma treatment is ASH – the American Society of Hematology. This year’s conference, I understand, contained good news for people like me with indolent lymphomas – particularly follicular lymphoma. Check out this video interview with Dr. Dr. Ephraim Hochberg, Director of Clinical Lymphoma Research at Dana-Farber/Massachusetts General Hospital:

An Expert's Perspective on the Latest in NHL from Patient Powerr on Vimeo.

It’s encouraging to hear this lymphoma researcher speak of turning the corner and heading into the home stretch on some long-term research efforts. The longer my lymphoma remains sluggish, the longer my watch-and-wait treatment approach continues, the more likely it becomes that some new medicine will be available when I need it.

March 6, 2010 - Going to a Different Place

Yesterday I spent three hours in the dentist’s chair – or, more specifically, the endodontist’s chair. It was the third session I’ve had in the past week or so, with one more coming on Monday.

I’m having a root canal done on a molar that’s developed an abscess. The tooth’s had a crown on it for years, so the doctor’s had to drill a hole down through the top of the crown and leave it open all week, to relieve pressure on the abscess and allow it to drain.

Dr. Donald Fahringer, the endodontist, is fabulous. He’s obviously highly skilled at his craft, and he’s very understanding of his patients. Each session begins with 4 (count ‘em), 4 shots of novocaine – slam, bam, one after the other. No messing around. None of this, “I’ll give you a little spritz of novocaine, and you raise your hand if it starts hurting.”

While it’s thankfully been a pain-free experience, it’s by no means been a comfortable experience. Sitting with your mouth held open for hours by a stainless-steel torture instrument topped with a latex dental dam, while somebody slowly rasps away at the inside of your tooth with tiny files, then peers inside your mouth with a microscope before rasping some more, ain’t exactly my idea of entertainment.

Fortunately, I’ve had a little experience with this sort of thing. Yes, I’ve had root canals before – but, it’s been many years, and none seemed to be as extensive a project as this one. The recent experiences that seem most relevant are my two bone-marrow biopsies - one in December, 2005 and the other in July, 2007.

On both those occasions, I instinctively knew I had to take myself to a different place – to be present, as I needed to, when the doctor needed to ask a question or to instruct me to turn a certain way, but otherwise I drifted off to a different plane.

During the bone-marrow biopsies, I randomly chose an object across the room to serve as a focal point, and focused my eyes on it, as I somehow burrowed down deep within my own consciousness. I can’t tell you how I did it, exactly, but I did it. I was there, but not there.

This time – with Dr. Fahringer’s permission – I brought my iPod into the chair, set it to pick songs randomly, and stuck the earbuds in as soon as he got started. I could hear and feel him doing things inside my mouth, unpleasant things, but I felt detached from the experience. I could just about hear his voice, over the music, when he asked me to turn my head toward him or open wider, but then, once I’d complied, I settled back into my own private la-la-land.

It’s one of the little lessons the cancer experience has taught me – not to mention the experiences I’ve had with contemplative prayer. Pain is real, discomfort is real, but up to a certain point, we have the power to influence the way those negative forces affect us.

All we have to do is go to a different place.

February 25, 2010 - A Time to Act

Today I received an email from Lance Arm- strong’s Livestrong organi- zation. It begins with this call to action, issued in coordination with the American Cancer Society Cancer Action Network:

“Today, our elected leaders in Washington are gathering to continue their debate on overhauling a health care system that fails far too many Americans. We’re hopeful they do the work we elected them to do: break through the gridlock, work together and leave the partisan posturing at the door.”

“Partisan posturing” is right. Along with a great many other Americans, I’m feeling appalled by Congress’ growing dysfunction, especially on the matter of health care reform.

Poll after poll has indicated that this is the number-one priority for the electorate. What’s wrong with our elected officials, that they can’t make any progress on this issue – which for a great many of the uninsured is literally a matter of life and death?

Not that our Senators and Representatives know much about that. Personally, they’ve got some of the best medical insurance around. No part of their health care system seems broken.

Nowhere is this clearer than in an incredibly boneheaded comment House Republican leader John Boehner made to the President at today’s healthcare summit. He gestured towards a copy of the Democrats’ proposal and grumbled, “This right here is a dangerous experiment. A dangerous experiment with the best health care system in the world.”

What planet does that man come from? “The best health care system in the world?” Sure it is, for members of the well-insured elite like Mr. Boehner. Not for most of the people who elected him: whose taxes bankroll his princely medical benefits, that allow him to continue to dwell in such a fantasy world.

Republicans, it’s time to put people ahead of politics and stop your random, mindless obstructionism. Democrats, it’s time to find some nerve, and negotiate from the strength of your majority - filibuster or no.

I invite you to join supporters of Livestrong, the American Cancer Society and myself in signing this bipartisan petition to Congress, urging them to break the deadlock and move forward.

February 20, 2010 - The Senator Joins the Club

News bulletins yesterday focused on one of our U.S. Senators from New Jersey, Frank Lautenberg, who’s just been diagnosed with cancer and will undergo chemotherapy.

Some of the early news stories about the Senator’s condition were shockingly inaccurate. Even the venerable New York Times got it wrong, saying Lautenberg has “stomach cancer.” A subsequent article corrects the error.

What the Senator actually has is the same thing I’ve got: non-Hodgkin lymphoma. The sub-type is diffuse large B-cell – which also happens to be the same aggressive form of the disease for which I was treated in early 2006. The indolent lymphoma I now have is small B-cell.

There’s a world of difference between stomach cancer and a lymphoma that manifests itself in or near the stomach. Subsequent news reports do seem to be getting it right, though.

I wonder if Senator Lautenberg will be receiving R-CHOP chemotherapy, as I did. One of the articles speaks about 6 treatments, 3 weeks apart, which certainly does sound similar.

An article in the Newark Star-Ledger quotes Roger Strair, director of Hematology, Oncology and Internal Medicine at the Cancer Institute of New Jersey, who observes that lymphoma is “an unfortunate consequence of the body's need to make hundreds of millions of immune cells every day.” Sometimes, he explains, those cells are “copied" incorrectly.

“It’s not because of or the fault of what people ate or drank, or the way they live their lives, or electrical lines in the backyard,'' Strair said.

That’s because NHL is largely a genetic disease. Most often it strikes randomly, without regard to family history.

The article includes a general prognosis for all forms of NHL, provided by Dr. Aaron Chevisky, chief of surgical oncology and co-director of the Carol G. Simon Cancer Center at Morristown Memorial Hospital: “The survival rate after one year is 80 percent; after five years, it's 65 percent after five years and 54 percent after 10 years.” That’s pretty good news. With the generally favorable prognosis for B-cell NHL and the wealth of effective treatments out there, I have a good chance of living with the disease a very long time. Which, of course, is better than dying from it.

I feel for Senator Lautenberg and his family, as he continues treatment and – as I presume he will – experiences side effects like hair loss. Right now, I expect he’s in he midst of the whirlwind. The papers do say he plans to continue in the Senate, though – showing up for debates and votes as he is able. That will surely be a tough road for an 86-year old.

With the Demo- crats’ health care bill balanced on a razor- thin majority, Senator Lautenberg’s presence and the Senate floor will be very much needed. I hope he won't have to rush over for any votes during one of the bad weeks out of the 3-week cycle.

Welcome to the club, Mr. Senator: the club no one wants to join, but which a great many of us will join eventually. You’ll find there’s a lot of support and caring among other members of the cancer community.

February 10, 2010 - Bean-Counter 1, Oncologist 0

Snowed-in today – or, to be more accurate at the moment, sleeted in. It’s a “wintry mix” out there – a real mess.

So, I have a little time to do a blog entry.

I just happened upon a link to a blog posting by a pediatric oncologist, David Loeb, who works at Johns Hopkins. It’s called “Why David Hates Health Insurance Companies.” Here’s some of what he writes about one of his patients, a young woman diagnosed with liver sarcoma:

“My patient will need a chemotherapy drug called ifosfamide to treat her tumor. This drug has a significant risk of infertility associated with it. After consultation with a reproductive endocrinologist, we decided that the best way to try to protect her fertility would be to use a drug called Lupron. Unfortunately, Lupron is expensive, so it requires prior authorization from the insurance company. I just received an email from our clinic coordinator that read, in part, ‘It won't be covered if it's for fertility reason (per her case manager).’”

“So... I have some choices to make. Do I lie and say the drug is being prescribed for another indication? Do I tell the truth and risk the family having to pay $750 per dose out of their own pockets? Or do I choose a different drug, one that will not work as well, and know that I am not providing optimal care for this young woman, and am increasing her risk of infertility?”

The rest of the blog entry indicates how hard this doctor has been working, documenting all the complexities of the case, emailing copies of medical-journal articles to insurance-company drones – trying to convince them to make an exception. Bravo to Doctor David for going the extra mile for his patient. I hope he gets someone to listen to him.

Who can put a price on a young woman’s fertility? The very notion of it boggles the mind. Yet, this is the Godlike power our broken health-care system places in the hands of insurance-company functionaries.

Think about it: an insurance-company clerk at a computer terminal vs. an oncology specialist at Johns Hopkins. The clerk is supposedly advised by a consulting physician – who’s on the payroll of the company and who receives bonuses for declining claims – who may not even be an oncologist. And who’s this “case manager,” anyway? My case manager, when I had one, was a nurse. A very capable and helpful person, but certainly not the equal of a Hopkins oncologist when comes to making treatment decisions.

This is the nitty-gritty of our present healthcare mess. This is where it gets up-close and personal. Those rageaholics at Tea Party rallies, ranting on about mythical “socialized medicine,” are perpetuating a system that forces highly-trained specialists to take precious time away from caring for patients to educate insurance-company bean-counters.

It’s not that this is an occasional aberration. This sort of Kafkaesque scene is replayed day in and day out, in hospitals across this land. It’s why our healthcare dollars buy so little patient care.

In a comment on Dr. Loeb's posting, his clinic coordinator chimes in:

"Why do physicians have to charge a high rate for service? They have to pay for me! On a daily basis, I have at least 20 cases on my desk to try and convince an insurance company to approve treatment and/or medications that will improve the patient's quality of life. This is distressing for the unfortunate loved ones who have to deal with the sometimes long wait. As if a child with cancer is not enough to deal with!"

We all know it’s a wasteful, inefficient system. Yet, there are also hidden costs, like this doctor’s and this clinic coordinator's time, that don’t show up on the usual balance sheets.

I wish every obstructionist Senator could read Dr. David’s blog entry.

This is our national shame.

February 4, 2010 - A Double-Dog Dare

Today is World Cancer Day. One of the simple facts about cancer, as we all know, is that early diagnosis is tremendously important. Sometimes it can mean the difference between life and death.

Yet even so, there are many people who have noticed something unusual or out of the ordinary about their bodies, but procrastinate on going to the doctor. Of the lump or mole or recurring pain they say, “I’m sure it’s nothing,” then go back to business as usual – until the next time, when they’re just about as likely to repeat the process.

Although I had none of these symptoms, myself, I did have a recurring sense that something wasn’t quite right, and felt led to ask our family doctor to check me for an aneurysm (something my father had experienced, and nearly died from). It was that ultrasound scan that revealed the presence of the large abdominal mass that was later diagnosed as lymphoma.

An email that arrived today from Lance Armstrong’s Livestrong organization suggested I pass along a little reminder that, if you’re going to get checked for cancer, sooner is surely better than later. Here’s the message:

Know your risks. Call your doctor….What are you waiting for?

Learning about your family history and talking to a doctor about your daily habits can give you valuable insight into the steps you need to take, right now. It’s true – talking to your doctor about cancer can be scary, and many of us just forget to bring it up. But your health is important to me and that’s why I’m asking you to start the conversation now.

All of us can take some simple steps, like this one, to fight cancer. For help in taking that first step, go to livestrong .com and DARE TO CALL YOUR DOCTOR.

Want to nudge your friends to call their doctor? Drop the soda? Stop smoking? You can do it here.

So, I dare you. No – I double-dog dare you.