Wednesday, October 31, 2007

October 31, 2007 - Are We Scared Yet?

It’s Halloween, the night when costumed little ones take the long and lonely walk up to houses of people they barely know, ring the doorbell and hope for the best. I can still remember the butterflies in the stomach, back when I was numbered in that company: the heady combination of exhilaration and fear.

Today, my role is limited to carving the jack-o-lantern. I try not to make him look too scary. He’s a sort of open-for-business sign, an invitation to the little ghosts and witches and ballerinas and football players to step up and dig some “fun-sized” chocolate bars out of the black-plastic witches’ cauldron.

Claire and I miss the days when our own kids were young enough to go trick-or-treating. Fewer and fewer kids stop at our door each year, it seems – despite our glowing pumpkin beacon. It has more to do with the fact that there are houses on only one side of our street, than anything else. These kids get smarter every year. They know the streets where they can maximize their take are those that have houses on both sides, and close together.

Maybe it’s because it’s Halloween, but today’s New York Times – responding to the recent anxieties about antibiotic-resistant bacteria – has a little article, called "How Scared Should We Be?", on the relative risks of dying from various things. Some of these comparisons are rather bizarre: such as the one that says you’re more likely to die from being bonked on the head by a falling coconut (150 cases a year, around the world) than being killed by a shark (62 cases in the United States).

Here’s a portion of a chart indicating various causes of death:

Heart disease: 652,486 deaths annually (1 in 5 risk)
Cancer: 553,888 deaths annually (1 in 7 risk)
Stroke: 150,074 deaths annually (1 in 24 risk)
Hospital infections: 99,000 deaths annually (1 in 38 risk)
Flu: 59,664 deaths annually (1 in 63 risk)
Car accidents: 44,757 deaths annually (1 in 84 risk)

Down at the lower levels, risks include:

Lightning: 47 deaths annually (1 in 79,746 risk)
Train crash: 24 deaths annually (1 in 156,169 risk)
Fireworks: 11 deaths annually (1 in 340,733 risk)

Am I scared, now, of dying of cancer? Not as much as I used to be. Part of that is because my prognosis is actually better, now, than it was, pre-treatment. But that’s not the whole story. When you live with this kind of threat for a while (and it’s now been nearly 2 years since my diagnosis), you do get used to it. It becomes part of the background noise.

Yeah, chances are pretty good that cancer’s what I’m going to die from, in the end. But, when will that end be? Hard to say. Indolent lymphoma takes its lazy old time, and typically lets itself get beaten back down into is hole numerous times, by a succession of treatments, before rearing up and doing its worst.

Bottom line is, I don’t have time to feel scared. I have things to do, people to see. Odds are, my disease’s progression is more likely to be spaced out over years (or, in the best case, decades) rather than months. So, I can put the fear off a while longer.

Happy Halloween!

October 30, 2007 - Blind Men Meet Elephant

I read an insightful article today, a New York Times review of a new book, The Surgeons: Life and Death in a Top Heart Center, by Charles R. Morris (Norton). The review, by Pauline W. Chen, is built around an image that describes our ungainly health-care system: the familiar fable of the blind men and the elephant.

The story originated long ago in India. It’s been immortalized in poetic form by a nineteenth-century Englishman, John Godfrey Saxe:

It was six men of Indostan,
To learning much inclined,
Who went to see the Elephant
(Though all of them were blind),
That each by observation
Might satisfy his mind.

The poem goes on to tell how each of the blind men walks up to just one part of the beast. One, touching its side, imagines the elephant as being like a wall. Another, running his fingers along the tusk, describes the elephant as like a spear. Still another, handling the trunk, thinks it like a snake. And so on, and so on. None of them comprehends the big picture.

The poem concludes with these stanzas:

And so these men of Indostan
Disputed loud and long,
Each in his own opinion
Exceeding stiff and strong,
Though each was partly in the right,
And all were in the wrong!

So, oft in theologic wars
The disputants, I ween,
Rail on in utter ignorance
Of what each other mean;
And prate about an Elephant
Not one of them has seen!

It’s a suitable reproof for those who approach questions of religious dogma with false surety, born of fragmentary experience. Chen, the Times reviewer, deftly applies the story to two aspects of the broken health-care system in our country. The first is the problem – familiar to many patients who have spent time in a hospital receiving multiple tests – of too many specialists and not enough general practitioners. Each specialist concentrates on his or her part of the body. Too often, it’s up to the family-practice physician – the doctor with the least-exalted position in the medical pecking-order, and therefore the least clout – to oversee the patient’s overall treatment and head off problems such as drug interactions and tests whose results cancel each other out.

The second way Chen uses the blind-men-and- the-elephant story is with reference to the competing financial interests – doctors, hospital administrators, insurance executives, pharmaceutical salespeople, attorneys, legislators and others – who are scrambling over each other to carve out their own, individual piece of the health-care pie.

Who looks out for the integrity of the whole system? Too often, no one.

Very often, success in medical treatment is built on mastery of details. That’s why we have specialists. They have the intellect and training to sweat the details.

Yet, there’s also a place – an especially important place – for those with the inductive-reasoning ability to synthesize the details and glimpse the big picture.

Chen concludes by mentioning an “artisanal” value system Morris identifies in his book. The persistence of this value system, despite all the external factors that are assaulting it, is critical to the success of the American health-care system. It’s a time-honored professional value, “one that has little to do with institutional allegiances or administrative management objectives, but rather with ‘internalized systems of ethics and the expectations of other professionals.’ And that, at least for now... may be the part of the elephant that saves us all.”

Artisans in medicine.
May their tribe increase.

Saturday, October 27, 2007

October 27, 2007 - Carrying Death in the Body

This morning, in the nowhere-land between sleeping and waking, a scripture verse comes to me. I've learned to pay attention to the thoughts that slide across the surface of my mind during such a time, which is often a riot of creative ideas.

The verse is, "always carrying in the body the death of Jesus, so that the life of Jesus may be made visible in our bodies." I feel a clear conviction, during that sleepy time, that the verse has something to do with my cancer.

After I awaken, I look up the citation. It's 2 Corinthians 4:10. The full context is as follows:

"But we have this treasure in clay jars, so that it may be made clear that this extraordinary power belongs to God and does not come from us. We are afflicted in every way, but not crushed; perplexed, but not driven to despair; persecuted, but not forsaken; struck down, but not destroyed; always carrying in the body the death of Jesus, so that the life of Jesus may also be made visible in our bodies. For while we live, we are always being given up to death for Jesus' sake, so that the life of Jesus may be made visible in our mortal flesh. So death is at work in us, but life in you." (2 Corinthians 4:7-12)

Were I ever called upon to preach a sermon about cancer, this passage would be a pretty good place to start. Having cancer is like carrying death around in our bodies. But – looking at it in a spiritual, rather than in a merely medical way – it's not just any death. It's the death of Jesus.

It's a cross. That's what cancer is: a cross we have to bear. Elsewhere in the Bible, Jesus himself exhorts his followers to be cross-bearers: "If any want to become my followers, let them deny themselves and take up their cross and follow me" (Matthew 16:24). A cross is a weighty burden, to be sure. Yet, Jesus promises us, "Take my yoke upon you and learn from me... for my yoke is easy, and my burden is light" (Matthew 11:29-30).

I remember reading, somewhere or other, a caution connected with the verse about cross-bearing. "Don't apply it to just any variety of suffering," some biblical scholar or other was warning (I'm paraphrasing, here). "The cross was an instrument of unjust oppression, so that verse shouldn't be used as an all-purpose answer to any suffering, especially not illness. The cross-bearing language ought to be reserved for political oppression – and, not just any oppression, but suffering accepted voluntarily by the victims as an act of public witness."

OK, if we're splitting theological hairs, I can buy that, but it still opens up worlds of meaning for me to view physical illness as a sort of cross. I suppose even Paul's thinking along similar lines as he speaks of "carrying in the body the death of Jesus." No, cancer wasn't inflicted on me by some persecutor. And no, I didn't choose to accept it. Whether or not I would have said, "OK, bring it on," would have made not one bit of difference as to whether or not I got sick. Yet, when it comes to long-term, chronic illness, we patients all reach the point when we discover we do have a choice. We can either choose to be victims, letting the illness drag us along passively, or we can reach out and actively shoulder our burden.

It's a sort of judo move. Practitioners of this martial art learn, early on, that a tried-and-true way to victory is to move in the direction your opponent is moving. Is your adversary throwing a punch? Don't meet the blow head-on. Rather, grab hold of his wrist and pull it towards you, but slightly away from your body. Your enemy will be suddenly unbalanced, and you will triumph.

Taking up a cross is kind of like that. When Jesus, in Gethsemane, prayed, "if it is possible, let this cup pass from me, yet not what I want but what you want," he was practicing a sort of judo move against the forces of death (Matthew 26:39). When he stood before Pilate, baffling the hard-bitten Roman governor by his resolute and impassive acceptance, he was practicing a similar move (Matthew 27:14). When he died with such dignity that his head executioner declared, in wonder, "Truly this man was God's son," the forces of evil were thrown to the mat (Matthew 27:54).

Yet all this is just about dying well. There's more, in the Christian gospel. Much more. The ultimate miracle, of course, is that God declared final victory over death by raising Jesus from the grave.

It's comforting, on a simple human level, to realize that Jesus knew suffering. If Jesus is the son of God, then that means God is no stranger to human life, its agonies as well as its joys.

A stanza from a contemporary hymn comes to mind:

"Not throned above, remotely high,
untouched, unmoved by human pain,
but daily in the midst of life,
our Savior with the Father reigns."

("Christ Is Alive!" by Brian Wren)

"Daily, in the midst of life," Jesus Christ dwells in our midst. We carry within our bodies his death: whether it's rapidly-mutating cancer cells, or the slow death from old age that comes eventually to even the healthiest among us.

One of the great secrets to living is how we choose to respond to that realization.

Friday, October 26, 2007

October 25, 2007 - Showing Up

Woody Allen once quipped that "95% of life is showing up." Today I earn a handsome certificate of merit, just for showing up.

It's my 25th reunion at Princeton Theological Seminary. At the luncheon, I'm called forward to receive an elegantly-printed piece of paper, declaring that the seminary and its Alumni/ae Association "pay tribute to the faithful ministry of Carlos E. Wilton."

Now, in case any of you may be thinking I've just won the ministerial equivalent of a star on the Hollywood Walk of Fame, let me make it clear that every member of the Class of 1982 received one of these things. There were about eight of us there, out of a class of maybe a hundred or so. All we had to do, to be so honored 25 years after our graduation, was to keep breathing – that, and show up at the reunion.

The 50th reunion class outdid us in that regard. Judging from the number of reserved tables in the dining hall with "1957" placards on them, they had four or five times the number of classmates turn out. Sure, these people are all retired, and have a little more discretionary time to pull up stakes and travel, but I think there's something deeper going on here.

I can tell, from paging through my old student photo directory and recalling the stories I’ve heard, that quite a number of the men and women I graduated with are no longer in parish ministry. Some got caught in the cross-fire of church conflicts. Tired of dodging bullets, they got up one day and simply walked off the field of battle. Others committed ethical lapses of the financial or sexual kind. Still others – many of the bright women who trailblazed their way into seminary in the 1970s and 1980s – discovered that the congregations that welcomed them as earnest young associate pastors weren’t so eager, a few years later, to invite them as seasoned professionals to sit down behind the pastor’s desk. Tired of gazing up at the “stained-glass ceiling,” they left for other occupations. As for the rest of those graduates who are now MIA, I suppose they just drifted away, for whatever reason.

Judging from the number of tables set aside for the Class of 1957, I don't think there are so many MIA ministers in that group. At their graduation, they were pretty much all young men in their twenties, so there was no sexism or ageism to contend with. They started out doing ministry in Eisenhower's America – probably the most congenial time in history for mainline Protestants. True, they persisted through the turbulent sixties and seventies, but the church in that era – while assailed from without – still had plenty of internal momentum to keep it going. By the time the eighties and nineties rolled around, and church-leadership pundits started pontificating about "the end of Christendom" – meaning, by that, the end of the unofficial Protestant establishment in America – these people were already at or slightly past mid-career, so there was little question they would stay the course, no matter how unbreathable the atmosphere seemed to be getting outside the ecclesiastical airlock.

When I think of what I’ve been through, medically, in the past couple of years, I realize how easily I could have become one of the MIA ministers. If my cancer had been of a less easily-treatable form, I might not have been able to jump in the car and drive over to Princeton to pick up my one-size-fits-all, suitable-for-framing certificate.

I suppose I could treat it as my diploma from the School of Cancer. I’m not done with that instruction, by any means – I’m enrolled in a few graduate courses, at the moment – but I feel like I’ve finished with full-time studies for now. (And a good thing it is, too, that I can say that.)

A number of friends at the reunion, from various class years, know of my health situation and ask me about it. A surprising number of them have discovered this blog somehow, and visit it from time to time. After I give them the lowdown on my general condition – how I’m out of remission but in “watch and wait” mode – I find myself saying how much cancer has taught me. It’s true. It’s been one of the most formative experiences of my life (although not one I’d wish on anyone).

No one offers you a certificate of merit when you finish chemotherapy. But, they should.

Wednesday, October 24, 2007

October 24, 2007 - Randy Pausch's "Last Lecture"

I'm still pondering a segment of the Oprah Winfrey show I watched on Monday.

I'm not in the habit of watching Oprah (nor any other daytime TV show, for that matter), but I did set my TiVO to catch this one. I did so because I'd read in Kris Carr's Crazy, Sexy Cancer blog that she'd scored a guest invitation to this mother of all daytime talk shows. I wanted to see if she had anything new to say.

Oprah's theme that day was what the dying have to teach us. About a third of the show was devoted to Kris, and the rest to Randy Pausch, a professor of computer science at Carnegie-Mellon University in Pittsburgh. Personally, I found Kris' segment less interesting (not because of any shortcoming in her presentation, but because I'd heard much of it before, viewing her film). Randy was quite a different matter. This was the first time I'd heard of him – despite the fact that videos of a lecture he gave at Carnegie-Mellon are all over the internet, and he's been featured in news articles and on several other network talk shows and news broadcasts.

Randy's got pancreatic cancer, and the doctors are giving him 2-3 months to live. You wouldn't know it from looking at him – he looks the picture of health. He even did some one-armed push-ups, just to demonstrate how fit he is.

Yet, beyond a doubt, Randy is dying – even though he's experiencing few symptoms right now, and has no pain. He's already had a Whipple operation – a radical re-sectioning of his stomach, liver, intestines and other internal organs – as a last-ditch effort to buy a little time. In a few months, his liver will cease to function, the cancer will spread to surrounding tissue in his back, his intestines will shut down and he'll experience severe, unremitting pain (although much of that can probably be mitigated by narcotics, provided he's willing to sacrifice his mental acuity).

It's about the worst diagnosis imaginable. But, that's pancreatic cancer for you. It's a stealth cancer that almost always evades detection until it's too late, then brings on a swift and painful death. In the various support groups I've been part of, I've watched how people who can glibly discuss all manner of grisly treatments and side effects fall into a respectful silence when the words "pancreatic cancer" are mentioned. There's so little hope of recovery.

Carnegie-Mellon evidently has a distinguished faculty lecture series known as "The Last Lecture." Those invited to speak in this venue are challenged to imagine they have but one final lecture to give, on the topic of their choice – then, to deliver it. Randy is the first lecturer in this series for whom the instructions are no mere thought- experiment. For him, they're all too real.

He gave the lecture, he says, not so much for the university, as for his three small children. They're so young that, as they grow up, they will have only fuzzy memories of what he was like, personally. This videotaped lecture is his one, best chance to record for them the principles by which he has sought to live his life.

Oprah had Randy deliver a Reader's Digest version of his one-hour lecture on her show. You can view the whole lecture elsewhere on the internet, but the Oprah mini-version is here:

Cancer – especially pancreatic cancer – is the most demanding teacher ever. Randy's done a real service to his fellow human beings, in refusing to bow before this teacher's brutally harsh discipline. Rather, he has wrested the lesson from his disease's icy grasp and shared it with us.

Thanks, Randy.

Thursday, October 18, 2007

October 18, 2007 - My Designer Drug?

An encouraging development, today, in a news release sent around by the Lymphoma Research Foundation: a company called Biovest International has announced that a vaccine for indolent, follicular Non-Hodgkin Lymphoma – the kind I have – is poised to move on through another stage of the FDA approval process.

The word "vaccine," as applied to this kind of cancer treatment, is used differently than in other contexts. When most of us think of vaccines, we think of preventative measures: a tiny, weakened sample of a viral disease – such as polio or influenza – injected into a person, that teaches the immune system to fight off the disease in the future. Cancer vaccines likewise teach the immune system to fight off disease, but they're not given as a preventative measure. They're given as treatment of a disease already begun.

Another difference is that cancer vaccines are not mass-produced nor mass-distributed. They're designer drugs, in the truest sense of the term. Each vaccine is custom-made – fabricated in the laboratory, with samples taken from a particular patient's abnormal cells (in the case of lymphoma, from cells taken, via surgical biopsy, from a cancerous lymph node).

Biovest, says the press release, "announced...its regulatory strategy for its Fast Tracked Phase 3 clinical trial of its anti-cancer vaccine for the treatment of Non-Hodgkin's Lymphoma, BiovaxID. The trial was begun by the National Cancer Institute in 2000. The Company performed a data lock in September 2007 and anticipates having an interim data analysis of unblinded data on the primary endpoint of disease-free survival for BiovaxID completed and publicly disclosed by March of 2008."

I don't understand all these terms, many of which belong to the rarified world of government regulation. I assume the phrase "data lock" means the Phase 3 clinical trial is winding to a close, and that the drug will soon be ready to move on to be considered for FDA approval.

The news release goes on to speak of "a survival rate of 95%" and an "outstanding safety profile of the Phase 2 and Phase 3 trials." It's PR-speak, of course, but if there's experimental data to back those words up, it's all very encouraging.

For a little while in early 2006, there was discussion of my perhaps being eligible for a clinical trial of an NHL vaccine. That was just after my diagnosis, when the doctors still thought I was dealing only with follicular, indolent lymphoma – not the aggressive variety as well. Until the revised pathology assessment nixed that possibility, Dr. Portlock suggested I consider joining a clinical vaccine trial. Whether or not this was the Biovest study, I can't recall.

In any event, it's encouraging news. If there's an up side to "watch and wait," it's that the longer I wait, the more likely I am to be rewarded with some research breakthrough that will result in a new treatment that will make a difference for me.

Tuesday, October 16, 2007

October 16, 2007 - Pushing Paper...Or Not

Lately, I haven’t been sweating the details.

It’s not that I don’t know how. Administration has always been one of my gifts. I’ve even worked full-time in higher education administration (Director of Admissions and Assistant Dean, University of Dubuque Theological Seminary, 1985-1990).

I do know how to keep track of details. Since coming down with cancer, I just don’t want to.

My desk at the church is piled high with papers. “I’ll bet you know where everything is,” a kind visitor will remark, beholding the sight. The scary truth is, I don’t know where everything is. (And this, from a person who used to lecture seminary students on efficient ways to organize a desktop.)

Having gone through chemotherapy and come out the other side, the thought of spending an afternoon doing something so mundane as filing has no appeal whatsoever. So, I just don’t do it.

Last April, facing a huge backlog of financial record-keeping that began when those love letters from doctors and insurance companies started packing our mailbox, there was no way I could have gotten our tax information to the accountant on time. So, I asked him to file for an extension. Yesterday was the do-or-die deadline, and I was on the phone to the accountant as late as 3 in the afternoon, answering his last-minute questions so he could file our return electronically. I could have submitted our information to him much earlier, but my recently-acquired aversion to details got in the way.

It seems like there are so many other, more important, things to do. Like preaching. And writing. And other things that – in my naive hope, anyway – may leave some sort of legacy. Compared to those pursuits, clearing off the desktop just doesn’t rate. These days, I only feel like doing things that feed my soul.

I’m quite sure there are nasty things hiding out under that pile of paper that will come back and bite me eventually. The thought of that is enough to concern me, but not enough to compel me to action.

So, what’s going on, here? I’m still trying to figure it out.

It’s possible that I’m mildly depressed. Depression is a common- enough side-effect of cancer, and I’ve heard how – ironically – the black clouds often descend only after treatment is concluded. When I’ve had a task before me – getting through chemo, consulting with specialists about a stem-cell transplant – depression hasn’t been on my radar screen (it may have been there all along, I just didn’t know it). Now, as I’m navigating the featureless fogbank of “watch and wait,” I’m becoming aware of how lonely it is out here. I’ve been thinking I need to find somebody (a dual-qualification professional, one who knows cancer as well as psychology) to talk with about how I’m coping – and maybe I will.

It’s often said that depression is anger turned inward. Surely, cancer’s given me plenty of things to feel angry about. The problem is, it’s hard to direct that anger anywhere constructive. There’s nobody to blame for giving me cancer (unless I blame God, and that leaves me in a theological conundrum). My doctors have been doing a great job treating me. My family’s been wonderfully supportive. Other than the people who send me all those window envelopes, I really can’t blame anyone – so, maybe I’m subconsciously punishing myself, through self-destructive behaviors like letting the papers pile up on the desktop, or procrastinating on paying bills.

All this is leaving me with a lot of questions, and not a whole lot of answers. I feel different, this side of cancer treatment. I am different. Just how, I’m only starting to figure out.

In the meantime, I wonder – will I ever see my desktop again?

Friday, October 12, 2007

October 12, 2007 - Not My Type

Yesterday afternoon I got a phone call from Brenda, my case manager from the stem-cell transplant program at Hackensack University Medical Center. She told me the HLA typing for my brothers, Jim and Dave, has come in. Unfortunately, neither one is a match. Each of them is what she called a “half-match” (whether that’s a formal, medical category, or just a way of saying, “Close, but no cigar,” I have no way of knowing).

I confirmed with her what I already thought to be true: that, should it appear at some future date that a stem-cell transplant is advisable, the transplant doctors will have to conduct a search through the National Marrow Donor Program to find a compatible donor.

I knew this could be a possible outcome. With a one-in-four chance of sibling donors being compatible, and two siblings, my chances were a 50-50 coin-flip. Still, it’s a bit of a disappointment. Even though the transplant option is on the back burner for now, it would still be nice to have that extra measure of security – of knowing that a compatible donor is waiting in the wings.

According to the National Marrow Donor Program website, I’m not alone: 70% of transplant patients don’t have a compatible sibling donor, and have to rely on an unrelated donor search. These searches take a little time: 51 days on the average to locate an individual donor, and less than 2 weeks if a compatible unit of frozen umbilical-cord blood can be found. This is why it’s a good thing that I’ve gone through the preliminary registration process with Hackensack already (despite my insurance company’s refusal to cover the typing test for Dave – a decision the hospital is appealing on my behalf).

I’m very grateful to Jim and Dave for stepping up to the plate, all the same. It’s a wonderful thing to have family standing behind you.

Thursday, October 11, 2007

October 11, 2007 - The Long Haul

There’s an insightful post on David Arenson’s “CLL Diary” blog for October 8th (CLL, for those who may not be familiar with the acronym, stands for “chronic lymphocytic leukemia”).

CLL has some affinities with indolent Non-Hodgkin Lymphoma. Both are blood cancers of the immune system. Both are more-or-less incurable, but very treatable. Both are the sort of disease you live with for a very long time, without getting better and only gradually getting worse.

David cites a recently-published study by the Mayo Clinic of the quality of life of CLL patients. One conclusion is that while “physical, social/family, functional, and overall QOL scores... were similar to or better than published population norms..., the emotional well-being scores of CLL patients were dramatically lower than that of both the general population and patients with other types of cancer.”

The reason? Many CLL patients spend a very long time in “watch and wait” mode, experiencing low-level anxiety that’s grueling in the long term. There’s a certain helplessness that goes along with the disease, David says. It’s like the agonizing moment in the midst of a car accident, when you know another vehicle’s going to hit you, but there’s nothing you can do about it – only that moment is stretched out, in slow motion, over the course of years.

From David’s blog:

“The Mayo authors point out that CLL patients do not become happier as time goes on. There’s an obvious reason for this: as the disease progresses, quality of life erodes. Immunity is degraded and patients become more easily susceptible to infections; they come down with related conditions...; they set out on the chemo highway and find that despite remissions, disease resistance builds. What once had seemed to be a manageable and tolerable disease becomes a constant source of medical testing, doctor visiting, and worry over whether things that go bump in the night are the sword of Damocles falling.

It can start to feel like the death of a thousand cuts, with no hope for a reprieve, save perhaps a risky stem cell transplant, assuming you can find a donor and have the insurance to pay for it.

And this, I think, is why CLL patients are in greater emotional distress than those with other cancers: With most cancers, you are diagnosed, the treatment options are pretty obvious, you fight the fight, and it’s over. You win or lose. You either go on with your life or you go into the afterlife....

CLL never seems to end. One wakes up to the same thing day after day and month after month and year after year, with the added negative that for many patients there is an overall decline in immunity and health as time goes on.”

So, is this the way ahead for me? Or, do I have some chance of breaking the curse?

It’s a spiritual question, one that I think I may need to start addressing in a determined way.

Therapy? Spiritual direction? A more consistent exercise regimen? A program of personal retreats? I’m not sure which one is the best way forward. I’d better start doing something, though, or else risk a slow slide downward.

Wednesday, October 10, 2007

October 10, 2007 - Who's Afraid of the Big, Bad Sloth?

Today I meet with Dr. Lerner. He’s received a letter from Dr. Donato, the stem-cell specialist at Hackensack University Medical Center, as well as a phone call from Dr. Feldman, the lymphoma specialist I saw there.

He’s in agreement with Dr. Feldman (or, I should say, Dr. Feldman is in agreement with him): the best course of action for me, for the foreseeable future, is to continue to “watch and wait.” He asks his office staff to set up a follow-up CT scan for me in the first week of November, and an appointment for me to meet with him again in early December. He’ll let me know by phone about the CT scan results, once they come in.

I’ve been out of remission, now, for the better part of a year (since March, 2007, when the first sign of new, swollen lymph nodes showed up on a scan). In the intervening months, I’ve had all sorts of tests, all sorts of consultations. I’ve set the wheels in motion for a possible stem-cell transplant, at some undetermined future date (a procedure that may or may not ever happen, if other treatments emerge as preferable). Yet, despite all this activity, I’m still no nearer to getting myself back into remission than I was in March. “Watch and wait” has been my only treatment. It will continue to be so.

On the one hand, that’s good news. Those cancerous cells aren’t threatening my life right now – not even close. Mine is a particularly slothful cancer – and who’s afraid of a big, bad sloth?

On the other hand, it’s still cancer. A dread disease.

“Watch” and “wait” are two words associated with the liturgical season of Advent, that begins in about a month and a half. I’ve preached whole sermons on these words: on the spiritual discipline of watching for the coming of the Lord, of being vigilant; and, of the companion discipline of waiting, of remaining patient.

There’s a certain tension between those two words. The act of watching requires a certain level of attention, like sitting on the edge of a hard-backed chair. The act of waiting requires long endurance. It’s aided by the ability to sink down deep into an overstuffed armchair and get comfortable.

I feel like I’m living that tension, and have been for some considerable time. I don’t exactly know which is more important, the watching or the waiting. Should I take up position in the hard-backed chair, or in the armchair? Or, do I move back and forth between them?

When I was receiving active treatment, I knew what to do. The challenge was immediately before me, and I was determined to meet it.

When I was in remission, I likewise knew what to do. It was back to business as usual, as my cancer slowly became a memory (except for the occasional, rude reminders of follow-up scans and monthly port flushes).

Now, the cancer’s returned, but in slow motion. (Or, more accurately, it never really left; it just became so small, it became invisible for a while.) How do I live my life, under such conditions? What sort of plans can I make? Dare I even dream?

I suppose I’m going to have to find a way to dream, anyway - to seek the dawn. I just can’t let cancer rob me of my future.

In one sense, that ought to be easy. It’s a truism that we’ve all been dying since the day we were born. Is my present situation any different?

Yet, I’ve also got the inescapable knowledge that there’s a deadly disease inside me – one that’s slow and slothful, to be sure, one that causes no symptoms right now, but one that could very possibly get me in the end.

Tuesday, October 09, 2007

October 9, 2007 - "Crazy, Sexy Cancer" on TV Again This Month

On September 7, I based a blog entry on Kris Carr's "Crazy Sexy Cancer" documentary: an edgy, emotionally real film about what it's like to deal with an incurable cancer diagnosis as a young adult. I'm a bit past the "young adult" label myself, but I could still resonate with a lot of what Kris was going through, as her story unfolded through the documentary film-maker's art.

At the time I wrote, the film had only been scheduled for the one showing, and was not available on DVD - so, if you missed it, that was just too bad.

It's still not available on DVD, but I've just learned that Kris' film is going to be rebroadcast several times this month. Here are the upcoming showings, based on Eastern time (check your local listings to be sure):

Discovery Health Channel
October 14th @ 12pm

October 31st @ 8pm & 11pm

(I suppose The Learning Channel people were looking for something scary for Halloween...)

Thursday, October 04, 2007

October 4, 2007 - Go-Slow on the Stem-Cell Transplant

This morning I drive up to Hackensack University Medical Center, for an examination and consultation with one of their lymphoma specialists, Dr. Tatyana Feldman. I hadn't requested this appointment; Dr. Michele Donato (the stem-cell transplant specialist) set it up, after the meeting of the Tumor Board at which the doctors discussed my case.

Between sitting in the waiting room and an intake interview with a nurse practitioner, it's three and a half hours before I finally meet the doctor. (They think nothing of making patients wait for very long periods at Hackensack.) As with my last visit, I'm prepared for this ordeal: both mentally and with a book in hand. I finish the book just before they call my name.

"Oh yes, I remember your case," says Dr. Feldman, as she enters the examining-room and looks at my folder. (She's a member of the Tumor Board.) There's a cursory physical examination, feeling for swollen lymph nodes, but – no surprise – there's nothing remarkable to report (my swollen nodes are pretty deep down).

Dr. Feldman gets right down to business, reading through my file. She's most interested in the report of the Hackensack pathologist, who has taken another look at my biopsy slides. She confirms my indolent-NHL diagnosis, and speculates that, regarding my first biopsy, the Memorial Sloan-Kettering pathologist may have been in error in declaring that my lymphoma had an aggressive component. This sort of pathology is not an exact science, she explains. Different pathologists have different methods of counting cells. Whether I had a truly mixed staging that morphed into indolent-only disease, or whether it was only indolent to begin with, is pretty much academic; there are differences of opinion, among pathologists, about the boundaries of each category. (It wouldn't have affected the treatment I received, either way; R-CHOP is pretty much the universal first-line treatment for a bulky-tumor NHL like I had.)

In any event, we're clearly dealing with indolent lymphoma now, so everyone's still agreed we'll proceed on that basis.

Dr. Feldman tells me she doesn't recommend a stem-cell transplant at the present time. No surprise, there; Dr. Lerner's advice to me all along has been that this is something for the future. The trip to Hackensack is mainly in order to get registered with that hospital, and get my brothers typed as possible allogeneic donors. These transplants – while offering the only real hope for a cure, at a 65% chance of succeeding – also expose patients to a risk of deadly infection. Dr. Feldman points out that 10-15% of transplant patients die of infections, or out-of-control graft-vs.-host disease. So, it's not something we ought to rush into.

Dr. Feldman also tells me my lack of bone-marrow involvement is relatively uncommon. Most indolent-lymphoma patients do have some cancer in their bone marrow. I ask if this makes a difference with respect to the likelihood of a successful transplant – whether there would be any advantage in getting it done sooner rather than later, before it's gotten into the marrow. No, she replies: with an allogeneic transplant (cells from a donor, as opposed to an autologous transplant, with cells coming from me), it makes no difference.

Dr. Feldman is Russian – I can detect an accent – and now she relies on a saying from her culture to explain my situation. It's not exactly like "a bird in the hand is worth two in the bush." She likes the Russian version better, which is something like, "don't gaze up at the crane high in the sky, while there are lots of sparrows on the ground." In other words, as long as my quality of life is good, let's get what advantage we can from the less-dangerous approaches, before undertaking heavy-duty treatment.

When it comes time to treat the cancer again – when the lymph nodes grow to a sufficient size, or when I start having symptoms (pain, sleeplessness, night sweats, sudden weight loss) – there are a number of options available. One of them, she says, is Zevalin (the radioimmunotherapy drug), which she says has an impressive record of success.

However many years down the road we may begin talking seriously about stem-cell transplant, the universe of available treatments will probably have expanded. Some therapies now in clinical trials may then be in common usage, and other, as yet undreamed-of treatments may be in trials (which Hackensack could play a role in getting me into). Time, in other words, is very much on my side.

I leave feeling rather upbeat. The crash-course I’ve had in stem-cell transplants in the past several weeks has caused me to brood about this possibility more than I really needed to. My purpose in going to Hackensack has been both educational for the present, and proactive with respect to the future. I do feel like I know a lot more about the transplant option, and certainly the folks at Hackensack know me, now – which is a very good thing.

Next Wednesday, I'll meet with Dr. Lerner. He'll help me understand more about all this, I know.

Leaving the hospital, I stop for a late lunch at an Asian buffet. Lots of wonderful sushi – a nice way to celebrate the pretty-good news.

Wednesday, October 03, 2007

October 3, 2007 - Catching the Wind

Yesterday evening, Claire and I had a wonderful time with our friends Myrlene and Eric, who invited us out on a sunset cruise on the Toms River, on their sailboat, the Pequod. (For the record, things are a lot more relaxed on this boat than on the original Pequod, of Moby Dick fame. I said to Claire, as we were boarding, that if there's a gold coin nailed to the mast, I'm getting off right now. There was no such thing. It was a metal mast.)

Eric loves to teach people how to sail. His idea of a good time is letting his guests steer the boat as much as possible, while he and Myrlene see to the ropes. Consequently, either Claire or I was at the wheel nearly the whole time.

I hadn't been out on a sailboat more than once or twice, since my days taking sailing lessons at the Toms River Yacht Club when I was a kid (my parents had a social membership there for a few years; we never did own a boat, other than a leaky, wooden dinghy with an outboard motor that my Dad used for fishing). It was amazing to me how much of the technique came back to me, all these years later.

One of the things I hadn't thought about for a while is how much indirection there is in a sailboat's progress. You always go in a straight line, but the straight line is rarely oriented precisely towards your goal. You tack up and down, in zigzag fashion, as the wind's direction dictates. It's kind of like the knight's move on a chessboard. There's a logic to it, but not the sort of logic you'd ordinarily expect.

The progress is also exquisitely slow. At times, you have the sensation of not moving at all, although a quick glance up at the full sails confirms you are getting somewhere, after all.

Eric and Myrlene take groups from their church (Morning Star Presbyterian, where Myrlene is pastor) out on the boat, and use it as an opportunity to teach not only sailing skills, but also a thing or two about faith. I'm still reflecting on something Eric said to us last night. He was remarking how, in sailing, you need to be attentive to the wind's direction, and orient the boat so as to catch the wind. He quoted Jesus' words in John 3:8: "The wind blows where it chooses, and you hear the sound of it, but you do not know where it comes from or where it goes." Eric didn't complete the verse ("So it is with everyone who is born of the Spirit"), but he didn't have to. We know it well.

Before I got sick, I used to delude myself into thinking my life is on a straight course, that my forward progress is as simple as driving a car down the road: point the tires in the desired direction, and off you go. Anything on the highway that threatens to change that course, like construction delays or heavy traffic, can lead to pointless frustration (even, for some, the infamous road rage). I had one professor in seminary who taught us that sort of goal-oriented behavior very explicitly, in his lectures. For him, it was all about making it to the tall-steeple church someday: the more influential the pulpit, the better. It's clear to me, now, that he considered ministry more of a career than a calling. He wouldn't have grasped Eric's point about needing to be attentive to the direction of the wind, and to set your course accordingly. He would have had us all roaring down the river in motorboats, churning up the water.

He taught us wrong. Ministry's not like that, at all: nor is life in general. We like to fool ourselves that we're in total control. Sure, we're in control of a few things: there's a rudder we can turn, there are ropes we can pull. Yet, there are certain times when, should we doggedly continue to point the prow directly at our intended destination, we'll only end up dead in the water, sails flapping helplessly in the wind.

Attend to the wind. Position yourself so as to catch it. It's the only way.

Monday, October 01, 2007

October 1, 2007 - Avast, Ye Swabs!

Somehow I missed observing International Talk Like a Pirate Day on September 19th, but at least I get to use a little pirate lingo here. I have no idea who started this scurvy holiday, but methinks it’s an excellent idea. Arrrr, me hearties, but don’t ye know, ye can’t talk like a pirate without bringin’ a smile to yer face!

So how did I get on that subject, anyway? Swabs! Yes, it was swabs.

About noon today, the Manse doorbell rings. It’s a FedEx driver with a big plastic envelope for me, containing four sterile cotton swabs, along with instructions for using them to take four samples of cells from the inside of my cheek. This is for my HLA testing – the DNA test that will determine the baseline that will be used to find a compatible donor for a possible stem-cell transplant for me.

Following the instructions exactly, I gingerly pick up each swab, making sure it doesn’t touch any surface other than the inside of my cheek. I swallow first (the instructions say it’s not a saliva test), then rub each one vigorously on the inside of my cheek, with the same amount of pressure I use when brushing my teeth (again, just as the instructions say). Then, I wave them in the air for a minute or so to dry them, before placing a name-and-date label on each swab’s handle and positioning it in one of four slots cut into a little foam-rubber block. Into another courier-service envelope they go (DHL Express this time, for the return trip). I drop them in a DHL collection box in the parking lot of a real-estate agency down the street.

It’s got to be one of the easiest medical tests I’ve ever undergone. The implications of this test, though, could be huge.

October 1, 2007 - My $10,000 Lab Bill

Last night, I was going through some of those window envelopes that have been piling up, and I came across one from a California firm called US Labs. I glanced at the "Pay This Amount" box, and when I saw the amount – $780.24 – I figured it had to be one of those situations where they haven't yet submitted it to my medical insurance. So, I fired off an e-mail to them, with my insurance information.

This morning I get a response. It turns out they already did submit the bill to my insurance, and my insurance has paid it. The $780.24 is the remaining portion of the bill that I have to pay.


I could have discovered that perfectly easily by reading the whole bill. The entire case is laid out right there, in black and white: 9 separate laboratory tests, with a full accounting of how much of each one my insurance has paid, and how much each charge has been reduced according to the "Contractual Allowance" (that's Blue Cross/Blue Shield's "If you think we're going to pay that, you're crazy" discount). I didn't read the whole bill, though, because the possibility that a lab charge of $780.24 could represent my responsibility after insurance wasn't even on my radar screen.

So what kind of wacky lab work is this, that racks up megabucks in one day? I look again at the bill. One of the charges says "Tissue Culture - Bone Marrow." OK, there's my answer. This is all from my bone marrow biopsy on July 25th.

Here are the itemized charges, before insurance adjustments:

In Situ Hybridization, $4,530.00
Flowcytometry/TC Add-On, $2,805.42
Flowcytometry.Read, 16 & >, $721.00
Tissue Culture, Bone Marrow, $551.10
Chromosome Analysis, 20-25, $543.83
Cell Marker Study, $361.00
Chromosome Karyotype Study, $219.04
Flowcytometry/TC, 1 Marker, $174.58
Cyto/Molecular Report, $89.03

Add ‘em all up, and what do you get? $9,995. Yep, it's true. One set of lab tests from a single set of tissue samples, weighing in at just shy of 10 grand.

There's not much reality to that figure, of course. After the insurance company's "If you think we're going to pay that, you're crazy" discount of $6,093.79 is applied, the cost is down to a mere $3,901.21. Insurance has already paid 80% of that, leaving me with my 20% co-pay of $780.24.

I don't even know what most of these tests are, of course. When words like "chromosome" and "molecular" pop up, though, you know you're in the pathological big leagues.

Treating cancer is expensive, no doubt about it. I'm coming to learn that even studying cancer, to find out what kind of treatment to pursue, is expensive in itself.