August 11, 2009 - Bring On Those Nanobees

There’s a widespread news story in the past couple days about “nanobees” – a technique of cancer treatment involving nanoparticles that head right for tumor cells. Researchers at Washington University in St. Louis have armed these tiny particles with melittin, a protein that’s the active ingredient in bee venom.

It’s a colorful image: swarms of nanoparticles racing through the body, locating cancer cells and stinging them to death. The fact that these particles are armed with a chemical found in actual bee venom verges on the poetic.

Here’s Paul Schlesinger, one of the researchers, commenting on why melittin shows such promise as an anti-cancer agent:

“Melittin has been of interest to researchers because in high enough concentration it can destroy any cell it comes into contact with, making it an effective antibacterial and antifungal agent and potentially an anticancer agent. Cancer cells can adapt and develop resistance to many anticancer agents that alter gene function or target a cell’s DNA, but it’s hard for cells to find a way around the mechanism that melittin uses to kill.”

So far, the researchers have had success in killing human tumor cells that have been implanted in mice. The nanobees have done their job on the tumors, delivering the melittin without causing ill effects in the mice.

This is important because, if melittin were injected directly into the bloodstream, it would attack hemoglobin cells. Somehow, when this protein hitches a ride on a nanoparticle, it holds off on its venomous attack until the nanoparticle delivers it to a cancer cell.

Yes, there’s a lot of lab work involved in developing a treatment like this. I find it interesting, though, that the new therapy’s essential ingredient is something found in nature – in the humble honeybee.

Whatever actual treatments may emerge from this new approach, it’s comforting to think that the answer was out there in nature, all along.

August 5, 2009 - Pulling the Boat to Shore

More from Rabbi David J. Wolpe’s Why Faith Matters...

Wolpe retells a centuries-old rabbinic parable, about a man in a boat pulling on a rope, in order to bring his boat to shore. From the illusory perspective of a passenger on the boat, it may seem as though the boatman is pulling the shore to him. In reality, of course, it is the boat that is moving. The land is solid, substantial, immovable.

Prayer is like that, says Wolpe:

“People have much the same confusion about spiritual weight and motion: In prayer, some believe that you are pulling God closer to you. But in fact the heartfelt prayer pulls you closer to God.

I have prayed in fear and in joy, in crisis and in calm. Each time I understood that what I was asking for was not the object of my prayer. My prayer that I would be healed was a prayer, stripped of all its topmost layers, to be assured that whatever happened would be all right. Every prayer in this way is a prayer for peace; it is peace in the world and in one’s soul, the certainty that the pain is not empty, the world not a void, the soul is not alone.”

- Why Faith Matters (HarperOne, 2008), p. 142.

No wonder so many scripture passages describe God as a rock that cannot be moved.

So much about the way we live our lives is egocentric. We really do believe – as the ancients believed about their home, the earth – that the universe revolves around us. One of our deep, spiritual tasks, as we mature through life, is to dispossess ourselves of this mistaken notion.

Cancer has a way of bringing that truth home all the sooner.

August 1, 2009 - In the Now

I’m sitting on the screened-in porch of our little house in the big woods – what they call, here in the Adirondacks, our camp. These are the waning days of my vacation.

I’m joined here today by our college-age daughter, Ania. She’ll be with me through the weekend, before we make the long drive home on Monday.

I picked Ania up at the train station in Fort Edward, near Glens Falls, late Friday night. The train was nearly 3 hours late – good ol’ Amtrak – so by the time we drove the couple hours back up to our camp, we didn’t get to turn in till 3 a.m. Needless to say, we both slept through the morning.

Ania’s working on a jigsaw puzzle, one she remembers from when she was much smaller. Of all the things we could be doing, this is what she wants to do right now, and that’s fine with me. This is her time, and I’m happy to simply enjoy it with her.

Turns out the puzzle is missing a couple of pieces. That doesn’t faze her. To Ania, it’s all about the process, not the product.

I’ve had a week and a half to ease myself into relaxation mode, but Ania has the gift of being able to jump right into it. She’s much better at living in the now than I am. I take a lot longer to shed all the to-do list items I typically carry around in my head.

Living in the now is a survivorship skill. Some of us are just slow learners.

July 31, 2009 - Praying in the Tube

Finishing out my vacation, I’ve been enjoying some quiet time up at our Adirondacks place, near Jay, New York. One of the good books I’ve been reading is Why Faith Matters, by Rabbi David J. Wolpe. David thoughtfully sent me a copy of his book, after reading my May 9, 2009 blog entry about him.

The book has a lot to recommend it. It’s a thoughtful, honest answer to recent critics from the scientific world, like Christopher Hitchens and Richard Dawkins, who have ridiculed faith and elevated scientific insights in its place. (It’s also a quick read, very accessible to people without extensive training in either theology or science.)

David is in the same place I am on that question, maintaining that religion and science need not be in conflict with one another. There’s no reason why a scientist cannot also be a religious believer, nor a believer someone who also accepts the insights of evolutionary biology or physics.

One part of the book that speaks personally to me is when David shares his personal experience as a cancer survivor. Like me, he has non-Hodgkin lymphoma, in an incurable form. Some years previously, he had surgery to remove a brain tumor. Here, he writes of his experience of prayer, as he’s undergone various medical tests:

“Throughout my various illnesses, I prayed. My prayer was not answered because I lived; my prayer was answered because I felt better able to cope with my sickness. Each time I go for my regular tests, the CT or PET scans or an MRI, each time I am moved into the metal tube that will give an image of sickness or health, I pray. I do not pray because I believe God will give me a clear scan. I pray because I am not alone, and from gratitude that having been near death I am still in life. I pray not for magic but for closeness, not for miracles but for love.

The novelist George Meredith wrote, ‘Who rises from his prayer a better man, his prayer is answered.’”

– Why Faith Matters (HarperOne, 2008), p. 25.

Some of the most heartfelt prayers any of us pray are those uttered “in the tube.” When we find ourselves in the tube, what do we pray for? Miracles?

I’ve wondered, on similar occasions, what the point is of praying for a negative test result (“negative” is, of course, a positive or good result in medical parlance). The machine, be it CT scanner or PET scanner or whatever, is simply taking a picture of whatever is there. I’m not praying for the result to come out skewed, of course – it’s in my best interest that the test be accurate, that my doctors fully understand whatever’s going on inside my body. When we offer prayers in the tube, are we praying that, if there’s a malignancy there, God will vaporize it then and there, in the few seconds before the picture is taken?

No, as David indicates, I think prayer is a good bit more complex than that. When we pray, we often do have specific results in mind, but more importantly, we’re seeking to be in communion with God, and perhaps also to feel a sense of solidarity with others who form the community of prayer. Indeed, we pray “not for magic but for closeness, not for miracles but for love.”

Of miracles, C.S. Lewis once wrote: “Miracles are a retelling in small letters of the very same story which is written across the whole world in letters too large for some of us to see.”

The point is, to catch that larger vision.

Prayer changes things. Prayer changes us.

July 22, 2009 - Dulanermin

Paging through an old copy of Cure magazine (a publication for cancer survivors), I notice a headline in a full-page ad: “Have you been diagnosed with Follicular Non-Hodgkin’s Lymphoma (NHL) following previous rituximab therapy?”

“That’s me,” says I to myself.

Reading on, I discover it’s an ad for a clinical trial being conducted by Genentech – the drug company that brought us rituximab (Rituxan). They’re also the people who flew Claire and me to Las Vegas a few years ago, to give a little motivational talk to their sales force.

Down at the bottom is a serial number I can use at the clinicaltrials.gov website, to find out more about this study.

I visit that site, key in the number, and come up with a page describing a study of a new investigational drug called Apo2L/TRAIL – trade name, Dulanermin.

It’s a Phase II clinical trial – which means it’s still in the early stages of investigation. As of now, the trial is also fully subscribed: which may be just as well, since I’m not sure I’d want to risk the side effects of a Phase II trial when I’m still in a watch-and-wait mode and feeling good.

It’s interesting to read about this new drug, all the same, because it could be in my future.

Here’s the scoop, from an Amgen press release of a couple months ago (the Amgen pharmaceutical company is conducting this research in partnership with Genentech). Dulanermin is one of a family of “highly selective therapies to induce cancer cell death.” Well, who can argue with that?

“In cancer,” the article continues, “the dysregulation of apoptosis is critical in the development and survival of tumors.” I know, from previous reading, that apoptosis is cell death – the normal tendency of cells to die according to a genetically-preset timetable, only to be replaced by new cells. In cancer cells, the apoptosis switch is turned off, allowing them to continue to grow and wreak havoc in the body. “The dysregulation of apoptosis” is inscrutable medical jargon for “throwing a wrench into the genetic machinery that would otherwise cause cells to die when they reach the end of their natural lifespan.”

Dulanermin – if it fulfills the hopes of the pharmaceutical researchers – would yank that monkey-wrench back out of the machinery, so cells would continue to die according to their normal timetable and would never morph into cancer cells.

The article defines dulanermin as “a recombinant human protein that targets death receptors 4 and 5.” Sounds like something out of Star Wars: “Luke, your mission is to fly your X-fighter along the surface of the Death Star and take out death receptors 4 and 5. May the Force be with you.”

Go for it, Luke.

Is this the next Rituxan? Impossible to say. Clinical trials like this are being conducted all the time, mostly below the radar of non-medical types like me. Every once in a while, a full-page ad jumps out at us, a reminder that this valuable work is going on.

Kudos to the researchers for keeping up with this sort of thing.

Who knows? If this one ever makes it to a Phase III trial, maybe they can sign me up.

July 20, 2009 - Where Not to Get Sick

If you haven’t yet read Atul Gawande’s article in the June 1, 2009 New Yorker about the high cost of health care in McAllen, Texas, you should. It’s a must-read for anyone who’s following the health care funding debate.

Why McAllen? Why should that dusty burg at the southern tip of Texas have the highest per capita health care costs in America? Gawande’s article is a detective story, chronicling his efforts to answer that question.

The answer he comes up with is that McAllen’s doctors are responsible for many of these elevated costs. They order up a whole lot of costly, high-tech medical tests, more than most other doctors around the country:

“The most expensive piece of medical equipment, as the saying goes, is a doctor’s pen. And, as a rule, hospital executives don’t own the pen caps. Doctors do.”

Remarkably, the highly-tested patients of McAllen are no healthier than patients elsewhere. Compared to some cities with lower medical costs, they actually do worse.

It’s not that McAllen’s doctors are less competent than doctors elsewhere, or that they’re morally challenged. Gawande’s explanation is that the entire medical system in McAllen is engineered – to a degree not typical of many other communities – to encourage doctors to order marginally-necessary, or even unnecessary, tests, and to prescribe costly treatments that may be no more effective than cheaper alternatives.

There are lots of reasons for this. According to Gawande, it’s a complex constellation of factors, including:

- a high rate of for-profit, physician-owned medical facilities;
- an entrepreneurial culture that sees doctors as businessmen and -women, rather than healers;
- a well-founded fear of lawsuits that leads to defensive medicine;
- comparatively less coordination of care than in other places, leading to duplication of services.

“Providing health care is like building a house. The task requires experts, expensive equipment and materials, and a huge amount of coordination. Imagine that, instead of paying a contractor to pull a team together and keep them on track, you paid an electrician for every outlet he recommends, a plumber for every faucet, and a carpenter for every cabinet. Would you be surprised if you got a house with a thousand outlets, faucets, and cabinets, at three times the cost you expected, and the whole thing fell apart a couple of years later? Getting the country’s best electrician on the job (he trained at Harvard, somebody tells you) isn’t going to solve this problem. Nor will changing the person who writes him the check.”

It’s the system’s fault, says Gawande. This is a classic example of a systemic problem.

Gawande compares McAllen to another town that’s in the lowest 15 percent of health care costs, nationwide: Rochester, Minnesota, home of the world-famous Mayo Clinic. The most significant difference is that a high percentage of doctors in Rochester are employees of the clinic, rather than entrepreneurial owners of their own little medical businesses. Success in that setting is measured in healthy patients, not the number of patients served. The medical system in Rochester is engineered to maximize health outcomes rather than profits.

They say this article has become required reading in the White House, by staffers tasked with proposing to Congress a workable fix for the health-care funding crisis.

No wonder.

The American solution to medical cost-containment, until now, has been to rely on the insurance companies to ride herd on all this Wild West confusion. The only problem is, the insurance companies are no more concerned with positive health outcomes than physicians are. The insurance companies work for their stockholders, not for the patients.

We need to develop a health-care system that does work for the patients. Other countries (Britain, Canada, France) seem to know how do this better than we. This is a rare opportunity for our national leaders to think outside the box and develop a funding system that truly serves the greatest number of people.

Just don’t blow it, politicians. Take the lobbyists’ hands out of your pockets and pay attention to your constituents. We’re hurtin’ out here – especially in places like McAllen, Texas.

July 15, 2009 - A Common Story

Last night, Claire and I, along with our daughter Ania and niece Elizabeth, went to a midnight premiere of the film, Harry Potter and the Half-Blood Prince. It did not disappoint.

We’ve been fans of the Harry Potter books for some time, and have eagerly awaited each film as it’s come out.

I was struck by how many people showed up at our local multiplex (they were showing the film on at least two of their screens, possibly more). It’s a remarkable thing how many people of all ages have come to know and love these stories: enough to fill cinemas across the country till half-past three in the morning – and on a workday, at that. Judging from the comments we overheard, a great many of our fellow Potter-o-philes are very familiar indeed with minute details of J.K. Rowling’s teenage-wizarding yarn.

It’s a great thing to have a common story.

I was led to wonder how many people, in these days of secularism, feel such a passionate connection with the biblical story? Once upon a time, novelists, playwrights, screenwriters and other creative types could assume their audience could easily recognize biblical allusions. For example, I’ve been listening to a recording of Steinbeck’s great novel, East of Eden, as I drive around in the car. The book’s loaded with biblical symbolism. Were Steinbeck writing today, would he bother to tie his story so closely to archetypal biblical tales like that of Cain and Abel? Would his readers care?

The success of the Harry Potter oeuvre – and Tolkien’s Lord of the Rings before it – speaks to this secular culture’s hunger for a common story, a deeply moral tale grounded in religious sensibilities.

Every time I attend my monthly Leukemia and Lymphoma Society support group (and it’s been several months now since I’ve been there, due to schedule conflicts), I’m impressed by the power of the common story we cancer survivors share. The details, diagnoses and treatments may differ, but there’s a deep well of common experience. In a very real way, the story of my fellow group members is my story too.

Yes, it is a great thing to have a common story.

July 6, 2009 - A Week in Rivendell

Claire and I are spending the week at the Presbyterian House in Chautauqua, New York. Part of the venerable Chautauqua Institution, the Presbyterian House is an old-fashioned guesthouse that accommodates about 65 people. It’s adjacent to the 5,000-seat open-air Auditorium that’s the site of the principal concert, lecture and worship events that take place here.

I’m serving as Chaplain at the Presbyterian House. My duties are pretty light: I preached a sermon on Sunday, offer grace at meals and will conduct a program of my choice on Thursday evening (I’ll lead a discussion on John Calvin, since his 500th birthday is the next day). For this, Claire and I get free room and board for a week, as well as a “gate pass” that gets us into most of the concerts and events that take place here. A generous offer on the part of the Presbyterian House board, for which we’re very grateful.

Chautauqua’s quite an experience: a throwback, in many ways, to the early years of the 20th Century. It’s a picturesque lakeside village filled with Victorian-gingerbread houses. Cars are pretty much banned 7 days a week; the whole place is surrounded by a fence, and – except for Sundays – you have to have a gate pass (admission ticket) to get in. Some people own homes here, and others either rent places or stay in the many hotels and guest houses. Lots of people we’ve met have been coming here for decades.

Sitting in the Auditorium on Sunday, listening to Samuel Wells, chaplain of Duke University (the preacher for the week) give an excellent sermon, I was struck by how insular Chautauqua is. Introducing Sam was Joan Brown Campbell, former director of the National Council of Churches, who’s now head of the Department of Religion here.

Chautauqua is a bastion of old-time, liberal mainline Protestantism. While most historians agree the Protestant Ascendancy in America reached its high-water mark decades ago, in the Eisenhower era, you’d never know it here in this place. Looking out at the nearly-full auditorium, listening to the spirited singing of classic hymns accompanied by a massive pipe organ, I was struck by how much the place feels like a protected island in the storm.

Out there, mainline Protestant churches are struggling against fearsome cultural tides that threaten to sweep us away. Many local churches are enmeshed in “worship wars” that pit fans of guitar-accompanied praise songs against those who love organ-accompanied hymns. We’re beset by interminable, destructive debates over sexual ethics. My own baby boomer generation seems to be the first generation of Christians ever that doesn’t understand what committed, regular financial stewardship is all about, so many churches are cutting budgets and downsizing (and were doing so even before the present recession began). Out there, these are tough days to try to pastor a mainline Protestant church.

In here, though – inside the Chautauqua bubble – it’s as though none of this were happening. Life goes on here, as it has for generations. The faces of the preachers, lecturers and musicians change, of course, but the overall program is much as it’s always been.

Bill, a friend of mine, describes it as "Disneyland for intellectuals."

A literary metaphor occurred to me, as I was sitting there that first day, that to me describes the role Chautauqua plays in the mainline church. This place is Rivendell.

In J.R.R. Tolkien’s The Hobbit and The Lord of the Rings trilogy, Rivendell is the sheltered community of elves, whose powerful magic keeps creeping evil at bay. Much of Middle Earth is quaking in fear at the advancing armies of Saruman, and his more-powerful ally, the Dark Lord of Mordor, but in Rivendell, all is peaceful. When Frodo Baggins and his band of travelers reach Rivendell after facing all manner of perils, they know they are safe for as long as they tarry within the elves’ circle of protection.

Eventually, even the elves themselves will depart their “last homely house,” and somberly sail off in their elegantly-crafted sailboats to eternal life in the Grey Havens – which seems to function, in the Tolkien novels, as something like heaven. But, for the present, Rivendell is a haven in the storm, a place of rest, refreshment, and re-equipping for the battle.

I can use this sort of R&R in a personal sense, of course. I haven’t been thinking about cancer much, while I’m here – although a few Presbyterian House residents, knowing of my history with lymphoma, have come up to me to share their own struggles with the disease. I’ve been thinking a good deal more about how wonderful life in the mainline Protestant church would be if all our congregations were filled with members and ministers like the good folks here. There’s a real spirit of caring and openness and generosity that permeates the place. Would that we could recreate it in our own communities back home!

Looking out over the auditorium congregation, I was also struck by how much gray and white hair there is. This place is teeming with AARP members. Many of the younger folks we’ve met – twenty- and thirty-somethings with kids in tow – are here with their parents and grandparents. It’s a popular spot for family reunions. Would the younger ones choose to come on their own?

All of which raises the question.... Whither mainline Protestantism? Will this congenial crowd return to their home churches, refreshed and renewed, equipped to bear witness to the gospel in edgy, new ways? Or, will they hang around spiritual oases like this a while longer, before packing it in and sailing off to the Grey Havens one day?

I’ve got a feeling the renewal of the mainline church won’t be sparked in places like Chautauqua. As wonderful as this place feels, it’s more about the past than the future.

But even so, it feels good to rest here a little while. Even the Fellowship of the Ring had to take a breather in Rivendell.

July 3, 2009 - Profits and Pain

A recent editorial in one of my favorite journals, The Christian Century, raises a pertinent question about the present healthcare-reform debate:

“The logic of putting citizens into a government-sponsored insurance pool is clear: it drastically cuts overhead, equalizes care, and meets the needs of those who can't afford or obtain coverage from for-profit insurers, who cut their costs by excluding patients with serious medical problems – precisely the people who most need the insurance and the medical care. But that logic alone will hardly slay the hardline defenders of the for-profit insurance system. The political and practical question of the moment... is whether there is any viable compromise – is there a coherent incremental step between the private system we have now and a full-fledged single-payer public plan?”

President Obama seems to think there is – which is why he’s backed away from his campaign promise to move expeditiously to a single-payer health system. Now, he’s mired in the boggy no-man’s-land between the single-payer advocates on the one hand and the insurance companies (clinging to the tattered remnants of our dysfunctional healthcare-funding system) on the other. He’s dodging rotten tomatoes being hurled from both sides.

It’s a battle of ideologies: between the free-market true-believers on the one hand – who are convinced not only that “the business of America is business,” as Calvin Coolidge famously said, but that the best marketplace regulation is no regulation – and those who believe history teaches, on the other hand, that a capitalist economy will end up eating its young if government doesn’t step in with some timely regulation.

In the same issue of The Christian Century, social ethicist Gary Dorrien makes this important observation:

“A fair amount of time has to be spent repeating over and over that single-payer is not socialized medicine, and a public option among private competitors is even farther from it. But we are approaching the point where opponents of health-care reform will start to stress the opposite concern. Their concern is not that a government program won’t work. The real worry, for all who want to keep the present system, is that a government program will work too well.”

“Working too well,” of course, means cutting into Big Insurance’s profits.

Are profits always good? That’s the essential question. Are they still good, even when the unfettered pursuit of profits causes pain for increasing numbers of people? How many of our neighbors must feel pain before the larger culture sits up and takes notice, demanding substantive change? How many uninsured and undertreated Americans is our system willing to throw under a speeding ambulance, before we’re willing to even consider following the lead of just about every other industrialized nation, implementing a national health-insurance system?

That’s the question I sigh and ask myself these days, anyway, as I scan the headlines.

June 26, 2009 - High Anxiety Threshold?

This afternoon I have a routine office visit with Dr. Lerner, my oncologist. He’s received a report from Dr. Sher, the endocrinologist I met with a week or so ago (I didn’t blog about that visit at the time).

Those who’ve been following this blog for a few months may recall that, back on Valentine’s Day, I had a PET/CT scan that revealed a possible nodule on my thyroid gland. A subsequent ultrasound confirmed that, yes, there was something abnormal growing out of the left side of my thyroid.

Dr. Lerner told me he didn’t think it was anything significant – most of these growths are benign, he explained, and this one was pretty small, at that – but he thought it was worth seeing an endocrinologist to get it checked out.

Through a series of scheduling misadventures, it was only a couple of weeks ago that I finally got in to see the endocrinologist. Dr. Lerner had given me the name of a Dr. Asnani, saying he wanted me to see that particular specialist, and none other – although he emphasized it wasn’t urgent, and I could meet with him any time in the next several months. Well, Dr. Asnani’s office staff told me he was in India on an extended visit, and they weren’t even making appointments for him until after his return. I called back over a month later, as they had instructed, and it turned out they had no free appointment for about another month and a half. The long and the short of it was that I finally got into his waiting room on June 16th – just over four months after the nodule first appeared on the CT scan!

Come to find out, Dr. Asnani wasn’t available that day, as he was making hospital rounds. I’d be seen by a resident, Dr. Lee, instead, and then by Dr. Asnani’s partner, Dr. Sher. Dr. Lee was actually the most helpful. She spent a lot of time with me, explained everything, and was very responsive to all my questions. She carefully probed my thyroid with her fingers, taking great pains to see if she could feel the nodule. Then, I saw Dr. Sher for all of about 2 minutes – no examination, just a reiteration of what Dr. Lee had already told me.

When I explain all this to Dr. Lerner today he says, that’s fine, Dr. Sher’s name would have been one he would have recommended – even over Dr. Asnani – but the last several times he’d tried to refer patients to Dr. Sher, they were turned away with the explanation that he wasn’t accepting any new patients! (The ways of medical scheduling are exceeding strange.)

So, what did Drs. Lee and Sher tell me about my thyroid nodule? That it’s very small (0.8 centimeters), too small to biopsy. They recommended I have another thyroid ultrasound in 6 months, and if it’s bigger than a centimeter, it may be wise to have it biopsied. Even so, they reassured me, I shouldn’t worry about it – only a small percentage of such nodules are malignant, so it’s just a precaution.

Well, I went away from the endocrinology office thinking it’s probably a good thing I’m going through this thyroid stuff after having been through a lymphoma diagnosis, chemo and all the rest – I might have been a nervous wreck, otherwise. My anxiety threshold when it comes to things medical has certainly gotten higher!

Dr. Lerner hands me a script for my next PET/CT scan in early September: time to start the whole cycle again.

June 25, 2009 - Farrah, Jane and "Let It Be"

News has just come through, today, of the death of actor and model Farrah Fawcett. I wrote about her cancer struggle in my May 16th blog entry. Her television documentary, Farrah’s Story, was a graphic account of the last months of her life.

While the film attracted some negative comments from critics, who branded it as reality-show exploitation, I saw it differently. It seemed to me a courageous (although rough-around-the-edges) statement from a dying woman whose deepest desire was to “not go gentle into that good night.”

Sure, Farrah’s story was hardly typical. She was an enormously wealthy woman with the means to jet all over the world seeking alternative cancer treatments. She was also more vocal than some about the problem of how cancer was affecting her physical beauty (hardly surprising in a woman who, in her prime, was a fashion icon). Yet, whose cancer story is ever typical, anyway? We’re all individuals, and in our respective responses to this disease we each display our own interior beauty.

This morning I walked across the street to St. Mary’s By-the-Sea Episcopal Church to attend the funeral of a neighbor, Jane, who died at mid-life after having been diagnosed about a year ago with a pretty-much untreatable form of cancer. She left behind two teenage daughters and a whole churchful of friends.

Jane designed the funeral service herself, down to every last detail. While it wove in and out of the Book of Common Prayer liturgy, the musical selections and personal testimonies were hardly typical funeral fare. We sang along with the choir to Pete Seeger’s “Turn, Turn, Turn” and listened to a talented guitarist sing the jaunty medley of “Somewhere Over the Rainbow” (as styled by the by the late Hawaiian singer Israel Kamakawiwo’ole) and “What a Wonderful World” that’s been making the rounds of indie singers.



We finished by singing the Beatles’ “Let It Be” – a baby boomer anthem if ever there was one. I’ve always heard the song’s mention of “mother Mary” was inspired by a dream Paul McCartney had of his own mother, whose name was Mary. After checking it out on Wikipedia, I learned his mother died when he was 14, of cancer. As she came to Paul in the dream, he was blessed with an overwhelming feeling of comfort and peace. According to Wikipedia, he later told an interviewer: “It was great to visit with her again. I felt very blessed to have that dream. So that got me writing ‘Let It Be’.” Speaking to another interviewer, he shared how in the dream his mother had comforted him: “It will be all right, just let it be.”

Some have assumed, I know, that “mother Mary” in the song must surely be Mary, the mother of Jesus, but of course that’s not the case. So, it doesn’t make sense, as some have done, to sing it in church as a celebration of that Mary. It turns out, though, in this context, “Let It Be” has a compelling personal (if not exactly liturgical) rightness.

From what I know of Jane – a deep-thinking, highly organized person – it’s likely she knew this story, and included it in the service for that reason. It’s the message she would have wanted her own daughters to take away from the experience of losing their mother:

“And when the night is cloudy,
there is still a light, that shines on me,
shine until tomorrow, let it be.
I wake up to the sound of music, mother Mary comes to me,
speaking words of wisdom, let it be.”

June 14, 2009 - New Lymphoma Vaccine

I’m feeling hopeful, today, after reading some articles about a new vaccine for follicular lymphoma, recently announced by Dr. Stephen Schuster, of the University of Pennsylvania’s Abramson Cancer Center, at the American Society of Clinical Oncology’s annual meeting in Orlando. One article is a University of Pennsylvania press release, the other an ABC News story.

Dr. Schuster’s study involves a personalized cancer vaccine, fabricated out of the patient’s own malignant cells. Other cancer vaccines are created to go after some factor that influences the survival of cancer cells. This one is different, Dr. Schuster says, because it goes after the cancer itself. The vaccine – or, rather, the process of producing it, since every patient’s version is different – is called BiovaxID.

I suppose it’s kind of like giving a bloodhound an article of clothing belonging to the fugitive being tracked. Having memorized the criminal’s distinctive scent, the hound is able to sniff out the quarry. The cancer vaccine, equipped with chemical markers from the patient’s malignant cells, does much the same thing.

The vaccines, which take 3 months to produce, are given in 5 injections spaced over 6 months.

The vaccine was given to follicular lymphoma patients who had received the standard CHOP chemotherapy treatment (the same one I had, minus the Rituxan), and who had gone into a remission lasting longer than 6 months (mine lasted 8 months). Those patients in the trial who received BiovaxID did significantly better than those in the control group: 44.2 months without a relapse, on the average, for those in the vaccine group, as compared with 30.6 months for those in the control group.

Dr. Schuster is calling for a new clinical trial, to see how the results will come out for those treated with R-CHOP (CHOP + Rituxan), as I was.

I wonder how long it will be before the vaccine is available, outside of clinical trials. I wonder, also, to which patients it would be given: whether only to people like those in the clinical trial, who are still in remission after treatment, or to people like me as well, who are out of remission. (Then again, maybe it could help me after my watching and waiting time is over, and some other treatment puts me back into remission.)

Complicated questions, to be sure. Regardless, news like this is always a source of hope.

June 12, 2009 - Beside the Lake

It’s nearing the end of a remarkable day, for me. After breakfast and a time of worship, our retreat leaders sent us off to find a place to spend two and a half hours in quiet discernment, seeking hints to the leading of the Holy Spirit in our lives. Four days’ work have led up to this point. I have been much occupied in reflecting on various things that have led me to feel spiritually and vocationally stuck. Many of them derive, directly or indirectly, from the way lymphoma has interrupted my life.

Reflecting back, now, on that time of discernment...

I make my way along the path to a large, lakeside picnic pavilion on the conference center grounds. The place, which is evidently where they hold cookouts as well as some wedding receptions, is deserted. Walking across the wooden deck to the railing by the water’s edge, I notice something at my feet. It’s a bird’s nest, with a yellow-and white smear on the planks beside it. Evidently, some prowling carnivore swept the nest down from a rafter overhead, then devoured the frail eggs that had been nestled in it.

Saddened by nature’s carnage, I pull a folding chair to the edge of the dance floor and sit there, looking across the lake.

Skirted by rolling mist, the dark water reflects the tall trees on the opposite shore. Occasionally, a fish breaks the opaque surface. The calling of circling birds reminds me this place is teeming with life.

Taking out my journal, I begin to write a poem that records the way this scene speaks to me, in a way I can only conclude is the leading of the Spirit:

CONSIDER THE BIRDS

“Look at the birds of the air...” – Matthew 6:26

Bird’s nest
cast on the wooden planks of a picnic pavilion:
empty,
bereft.
Beside it,
a spattered mess of yolk and white:
life’s potential
spilled out
by some anonymous predator.
Life is hard,
far harder than we know
through pampered days;
cruel, too,
and unspeakably random.
So many fruits of careful, loving preparation
cast aside
with one sweep of the predator’s paw,
one feathered flurry of raptor-wings.
And what of the wattle-and-daub sanctuary
of my life, my career (if I may use that un-theological word)?
There is sadness:
immense sadness,
mourning,
for all the cancer has swept away.
Sometimes I fear my vaunted call to ministry
has become but a smear of yolk and white
upon the deck.

Whose call is it, anyway,
I hasten to remind myself?

Out on the lake,
a man is rowing backwards,
facing towards the prow.
He wants to see where he is going.
Does he not trust the dread discipline
of rowing towards a destination he cannot see,
eyes fixed on the reference point?

Get up.
Get up and walk a spiral labyrinth
upon the dance floor:
a squared-off spiral,
defined by angular symmetry of faux-wood tiles.
Constriction
on the way in,
tightness.
Options, one by one,
falling away.
At the center,
a swift turn upon the heel:
scarcely room to breathe.
But then,
but then, the turning.
“To turn, turn will be our delight,
till by turning, turning we come out right.”

What of the ravaged nest?
What of it?
Shall my eye continually be drawn
to such a horror?
What of the bird-mother,
whose eye must have,
one time at least,
been drawn to that appalling sight?
There is birdsong in this place,
to be sure,
but no black-winged mourner,
perched disconsolately upon a rafter.

Then
comes the Sweeper,
broom in hand.
His eye falls upon the downed nest
before he stoops down,
pausing scarcely a moment,
and picks it up in two fingers
before walking solemnly to the rail
and tossing it gently into the lake:
burial at sea.
A squeeze-bottle of pink disinfectant
completes the ritual,
soaking the boards:
chemical absolution.
A few passes of this Undertaker’s broom,
and all that remains
is a wet spot upon the planking.
Nature,
like the mother bird,
has a way of moving on,
it would seem.
(Later,
Archangel Janitor paces slowly away,
squeeze-bottle in one hand,
rag in the other.)

Tears wet my eyes
as I recall how many days I have wasted:
days the Lord has made,
intended for rejoicing.
How many pounds of walking burden
have I allowed to gather at my waist?
How many meaningless rectangles of paper –
8½ by 11, and other shapes and sizes –
have I allowed to join the dusty disarray
on my abandoned desktop?
Have I become a bystander to my own, neglected life,
in ways the mother bird
never allowed herself to be?

I sit, davening, upon my folding chair.

“What are you doing here, Elijah?”
“I have been very zealous for the Lord, the God of hosts.”
I have fought the helmeted cancer-hordes to a draw.
(So far, they have not returned,
but for the occasional, ominous scout.)
“I, I alone am left” has been my cry.

The Lord, of course,
would not,
does not
let a true prophet get away
with such an easy answer.

My way back
is serenaded
with birdsong.

June 11, 2009 - At CREDO

I realize it’s been quite a while since my last post. Life has been more than busy – bordering on overwhelming, at times. Each year, I always underestimate how hectic the month of June is, in parish ministry. June is the month when most church programs make ready to go into hibernation for the summer (yes, even here in a beachfront resort community). There are lots of end-of-the-year special events to occupy a pastor’s time.

Not only that, I’ve been away from home since Monday, at a continuing-education event called CREDO (an acronym for Clergy Reflection Education Discernment Opportunity, which also happens to spell out the Latin word for “I believe” – or, as some have more poetically pondered, “I give my heart to”). The invitation-only program is put on (and heavily subsidized, financially) by the Board of Pensions of the Presbyterian Church (U.S.A.), although they borrowed its design from the Episcopalians, who pioneered this concept of ministry support. We’re meeting at Beaver Hollow, a well-appointed executive conference center in a rustic, woodsy setting near Buffalo, New York.

It’s an unusually long continuing education conference: eight days. It’s kind of a mid-career tune-up for ministers who have been at this work for a long time and who’ve perhaps have not had an opportunity for a while to get away from the daily grind and reflect on the experiences that led us into this line of work in the first place.

It’s a wonderful group of people: gifted men and women from all over the country who are, for the most part, quite good at what they do. The ages range from 40-55. Few of us have ever met before, but the bonding was instantaneous and we’ve been having a great time.

It’s a wholistic sort of approach, focusing on finances, health, spirituality and vocation. Mostly we’ve been listening to presentations so far, with some small group work. Later in the event, there will be some time set aside for writing our personal “CREDO Plan,” a sort of personal to-do list for strengthening our spiritual life and ministry.

I’d like to share something from a CREDO handout on the subject of health. It has a lot to say to cancer survivors, and to everyone else as well:

A VIEW OF HEALTH

1. Health means a sufficient absence of injury or disease processes so that my basic functioning operates without impairment (This is the traditional view of health).

2. Health means having an awareness of and reliance upon the life force within each one of us, which makes for growth and in the event of illness, for recuperation (we call it a positive attitude).

3. Health means having a sense that each of us belongs to others, and a desire to contribute to the common good (we call it an other-centered attitude).

4. Health means having an understanding that each of us is more than a product of history; that as individuals, we cannot only cope with the flow of events, but we also participate in shaping them (we are co-creators).

5. Health means interacting with others in such a way that our self-constancy, stability and individuality are not dissolved; even under threat (our egos are intact).

6. Health means having a sense of integrity. That is, we function as a unit and are not self-destructing (we have direction, focus, purpose).

7. Health means having a sense of the value of life and of living as a steward, not an owner (we are optimistic and free because nothing belongs to us individually. We have nothing to lose. We can live sacrificially).

8. Health means having a view of life that acknowledges dependency as a part of reality and rejoices in it; which recognizes gifts, including the gift of God’s love, mercy and ever-present Spirit and gratefully accepts them; which accepts creaturehood, as befits children of God.

9. Health means having an appreciation of living from the aspect of eternity that allows us to find security in the hope and expectation of life everlasting, not everlasting life (We can hang loose through all adversities of life because our perspective is eternal).

10. Health means embracing mystery and ambiguity as welcome friends.

Source: Adapted from Richard P. Ellerbrake’s remarks, Helen J. Westberg Lecture, Sixteenth Annual Westberg Symposium, September 11, 2002.

What I like about this statement is the way it integrates the medical and the spiritual. We need more of that sort of thing.

May 28, 2009 - On Not Jumping the Gun

Today I read an online article about prostate cancer – specifically, how some men who get regular PSA tests may end up getting overtreated for the disease.

It’s a situation that’s parallel to my NHL, because of the similar, watch-and-wait treatment protocol.

Man gets PSA test. Test detects a small, almost insignificant presence of cancer. Knowing most prostate cancers are slow-growing, doctor recommends watchful waiting. Patient, who’s just heard the word “cancer” for the first time in a medical diagnosis, flips out, imploring the doctor get rid of the cancer, whatever it takes. Under pressure, doctor initiates treatment – despite the possibility of debilitating side effects and the knowledge that the treatment is likely to be no more effective now than later.

It’s all because of the patient’s panicky reaction to the word, “cancer.”

I know. It’s only human to respond that way. I did, myself, when I was first diagnosed. We’ve been taught to think of cancer as a killer, that must be excised from the body instantly, no matter how difficult that process may be.

You can see this in the way some people use the word “cancer” as metaphor. If someone speaks of “a cancer on the organization,” or something similar, it means the offending member must be drummed out of the corps, post-haste. That’s what we do with cancers, right?

Sometimes, but not always. Not when it’s a slow-growing cancer – like most prostate cancers, or my indolent NHL.

I’m away at a church conference this week, the national meeting of the Presbyterian Association of Stated Clerks. Today, at the breakfast table in the conference center dining hall, a colleague I haven’t seen in a while asks me how I’m doing. I explain the watch-and-wait thing, and she at first assumes I’m in remission. No, I’m not in remission, I correct her. It’s been 3 years since my treatment, but my remission only lasted about 8 months. The cancer’s been back ever since then, but we’ve yet to treat it, because it’s still too small to treat.

She gives me a quizzical look that reveals she clearly doesn’t get it.

I explain to her that my cancer is one that doesn’t – in fact, shouldn’t – be treated immediately (and that this is a tough idea for any of us to wrap our minds around). Doing so will just deplete the number of implements in the doctors’ treatment toolbox, tools that may be needed later when the cancer does get big enough to treat.

After my lengthy explanation, my friend does get it – but, I rather suspect she goes away thinking I’ve got some superhuman reserves of psychological endurance, being able to get up and walk around each day, as I do, with the knowledge there’s untreated cancer inside me.

It’s not that big a deal, though. It really isn’t. Once you get used to the idea that you’ve got an indolent cancer, and understand what that sort of cancer really is, you can function rather well. Sure, there’s a constant, low-level sense of unease about the future, but it is low-level.

You have cancer. You live with it. Somehow, with a little help from your friends, and your God, you get by.

As long as you don’t jump the gun.

May 16, 2009 - Farrah's Story

It’s hard to believe it’s been a week already since my last blog entry. Life has been overflowing, of late – not so much with rich and wonderful experiences as with the sort of minutiae that distract from the main thing.

Anyway, last night I did manage to take some time to view Farrah’s Story on NBC TV. For several years, Hollywood celebrity Farrah Fawcett has had anal cancer that’s now metastasized to her liver. Her prognosis is not good. For the past couple years, she’s brought a video camera along on most of her medical visits. Her intention, at first, was simply to keep a personal record of the complex medical information the doctors were feeding her, but eventually it occurred to her to make a documentary out of the footage.

This is the program that premiered on NBC last night. As the documentary airs, she’s no longer receiving chemotherapy, but is said to be receiving other anti-cancer drugs. It does seem, sadly, that her doctors have just about run out of options.

The film records Farrah saying, long before she reached this stage in her treatments: “So I say to God – because it is, after all, in his hands – ‘It is seriously time for a miracle.’”

It’s a gritty, realistic documentary. It pulls few punches in displaying the pain and exhaustion that so often go along with aggressive cancer treatments. So eager was Farrah to receive the most cutting-edge treatments that she left the care of her Los Angeles doctors for a time, and flew to Germany. There she had found a surgeon willing to undertake the tricky removal of her anal tumor, as well as another doctor who was willing to directly destroy her liver tumors, one by one, with a painful laser ablation treatment that involved sticking needles directly into her abdomen.

Farrah evidently wanted to show it all: a rather surprising move, for a movie star who’s spent her life carefully managing her public image. “There were things that I thought were too invasive to film,” Farrah’s friend and collaborator Alana Stewart explained, in an interview. “But Farrah said, ‘Film it. This is what cancer is.’”

The treatments seem to have bought her some time, little more. Hers is the story of a cancer survivor who's determined to do everything possible – even pushing the limits of the possible – to aggressively turn back her disease.

Because Farrah Fawcett is who she is – a world-famous celebrity, and a very wealthy woman – she has access to treatment options few other patients can consider. The film portrays her flying back and forth to Germany on a chartered jet, and staying, during the time of her treatments, in a picturesque alpine chalet that looks like it comes straight out of Heidi. Here’s a woman who’s lived her adult life at the pinnacle of privilege, but at the end of the day, she’s like any other cancer patient. Cancer is a great leveler, that way.

Towards the conclusion of the film, Farrah even loses her trademark mane of blonde hair. I found it a strange experience to watch some of her close friends describing what a horrible sacrifice this was for her, as though a coiffure were life itself – but then, I had to remind myself, these are Hollywood people. Their aging faces display the craft of the cosmetic surgeon. For them, physical beauty takes on disproportionate importance. It seems less so for Farrah herself, actually, than for those around her.

In the film, Farrah’s longtime companion Ryan O’Neal pays tribute to her inner beauty – and that’s the impression I’m left with, from this rather roughly-edited, but very realistic film. Farrah’s Story is the tale of a survivor. Whether or not she gets the medical miracle she tells God it’s “seriously time for,” there are miracles aplenty of strength, perseverance, community and love.

May 9, 2009 - A Most Useless Place?

Dr. Wendy Harpham sent me a link to the blog of Rabbi David Wolpe, who also has non-Hodgkin lymphoma. Several years before that, he had surgery for a brain tumor. Here, he writes about receiving his last Rituxan infusion, ending a two-year follow-up regime after chemotherapy for NHL:

“Recently I had the final infusion. But I was not at all sure that pulling away the safety net was a cause for celebration. My doctor poked his head into the curtained chamber to assure me that he expected a long remission. Kind of him, but what could he say?

Remission is cancer's suspended animation. The renegade cells are poised to return but no one knows when. It could be a month or a decade; for my type of lymphoma (one of the more than thirty varieties of Non-Hodgkin's lymphoma) there is no cure. So I am stuck in what Dr. Seuss – in a book I used to read to my daughter – calls “a most useless place. The Waiting place....’”

A most useless place. That phrase does sum up how it feels, sometimes. Unlike David, I’m out of remission – have been for a couple of years – but there are days when I, too, feel like I’m in suspended animation.

David’s experience is similar to mine, too, in that he is a member of the clergy, serving a congregation:

“I had the strange, surreal experience of hearing my congregants' shock that this could happen to the family of the Rabbi – as though professional piety was a shield against disease. As though God played favorites.

Right before my brain surgery I appeared in front of the congregation and asked them for their patience and their prayers. Three year later I was standing before them, bald. I witnessed the realization in their eyes that there are no guarantees, no protected people. No one is safe.”

No, no one is safe. Yet, that observation ought to be surprising only to those who believe God is some cosmic puppeteer, manipulating the lives and loves and illnesses of us poor, benighted souls who dwell below. Is cancer a thunderbolt, cast down in righteous anger from Olympian heights? I’ve never seen it that way – although I’ve met plenty of people, both inside and outside my church, who fear it may be.

Granted, there are strains within the biblical tradition that portray God that way. God punishes the ten spies who brought back an unfavorable report of the promised land by killing them with plague (Numbers 14:37). God gives the adulterous David and Bathsheba’s infant love-child a fatal illness (2 Samuel 12:15-17). Even worse, God famously afflicts Job with boils, not because he’s an unjust man but simply because God wants to win a debate with the devil.

Yet, before everything is said and done in the Hebrew scriptures, the Lord is portrayed as “merciful and gracious, abounding in steadfast love” (Psalm 103:8). That’s the majority witness. When it comes to the New Testament, of course, God not only sympathizes with human suffering, but personally undergoes it, becoming incarnate as Jesus Christ.

Yet, the ancient images of a capriciously angry God, that dread smiter of sinners, are maddeningly persistent. “What did I do to deserve this?" is the anguished cry we pastors hear again and again, whether spoken or unspoken, standing at the foot of many a hospital bed.

No one is safe. We’re all going to die. Some of us sooner than others. If we’re spared from some fatal catastrophe on the highways, we’re all going to hear some doctor admit to us, someday, “I’m sorry, but there’s nothing more medical science can do for you.” Is this God’s judgment?

The story of Adam and Eve in the Garden suggests it is. Death is, that story suggests, God’s judgment on the entire human race. That may be so, but, unless we toss out all the biblical witnesses to God as patient and merciful, it’s hard to make a case for God micro-managing the entries in our individual medical files. We belong to a race for whom that dark, old lullaby is all too true:

“Hush, little baby, don’t you cry,
for you know your mama is born to die...”

The divine decree of death is meted out to the human race en masse, not on a case-by-case basis.

The fact of death is perhaps the deepest mystery we children of Adam and Eve seek to plumb – as Rabbi David has himself come to realize:

“For now I am just waiting. I am trying to find my own way through this because, inevitably, I will be asked how I did it. Rabbis are supposed to be figures of authority and calm. It was hard enough to reassure my congregation that a fickle universe does not mean that God is absent. That belief does not indemnify me against adversity. That my faith through all this is unshaken. How does one live, Rabbi, is the question my congregants ask, of not so directly. Tell me, Rabbi – it is your job to know.

My answer, I now realize, is: Live as if you are fine, knowing that you are not. Death is the overriding truth of life but it need not be its constant companion. My safety net is gone. I feel, as all people in remission do, that each time I fly my hand may slip from the trapeze. But to live earthbound is to give the cancer more than it deserves.”

The place David and I find ourselves in may feel, at times, like “a most useless place.” On deeper examination – and, viewed through the eye of faith – it turns out to be anything but.

May 7, 2009 - Microscope-Ready

Good news, today, in the form of a news article about government allocations for medical research. The article in Bloomberg News reports on what one researcher calls “a stunningly large number” of dollars – $10.4 billion of ‘em, to be exact – that will be devoted to curing what ails us. “Breakthrough findings on obesity, AIDS, Alzheimer’s, Parkinson’s and cancer” are on the way, the article predicts.

President Obama has included this amount as part of his $787 billion shot in the arm for the economy. There’s been lots of talk about rebuilding the nation’s crumbling infrastructure through “shovel-ready” projects like bridges and highways. It’s nice to know there are some microscope-ready projects, as well, to benefit those of us with chronic illnesses.

There are some who say that, once you have cancer, never a day goes by that you don’t think about the disease, at least once. I’m pretty sure that’s continued to be true for me, during this extended period of watch-and-wait. Some days I think about it a lot, other days it’s no more than a fleeting thought. Yet the though is always there, if only lurking below the surface.

I would a great thing, indeed, if I didn’t have to think about it anymore.

It would be a great thing, as well, if some additional billions would be used to buy health insurance for those without it – although I suppose that’s coming down the pike soon enough, along with the rest of the President’s healthcare-funding proposal.

Why is this important? Check out this 7-minute video that tells what an impossible fix a hard-working American family can get into when cancer comes knocking at the door:



Quite apart from the humanitarian factor, cleaning up our nation’s broken healthcare-funding system – that leaks dollars like a sieve – will actually strengthen the economy.

Now, that’s the sort of win-win scenario that even a fiscal conservative ought to be able to appreciate.