An "N" of 1

I ran across this reflection today, in a Chicago Tribune article, from breast-cancer survivor Catherine Drew Gilpin Faust, President of Harvard University:

"I [remember] my meeting with my physician after the results of the exploratory biopsy. He was telling me what they found and what his thoughts were about what I ought to do.... I'm trying to digest this news, and I start peppering him with questions. What are the percentage chances of this? What are the percentage chances of that? And he answered all my questions, then he said, 'But just remember, whatever you have you have at 100 percent.' And that was such an important comment for me, because I realized, you know, whatever I learned, I was an 'N' of 1, and I had to figure out what that meant within this larger framework of all this information. I also thought it was an interesting thing to have a physician [who was] in a research medical center who was obviously a doctor doing clinical work as well as treatment to be able to remember that, that a patient is an 'N' of 1, not just one in a whole line of statistics. I've often thought of that as I've faced health challenges."

That's a rather perceptive comment on the part of her physician: "Whatever you have you have at 100 percent." Lots of us get stymied by statistics. We get preoccupied by the question, "What are my chances, Doc?" - and by whatever percentage answer the doctor may be so bold as to give us.

I don't fully understand the "N of 1" business. That's mathematics-speak, and I'm not so fluent in that language. I take it to mean, though, that each case is unique. There's no sense buying trouble by assuming someone else's cancer experience will turn out to be our own. Our experience is bound to be different in some way or another, because we're different.

I remember meeting with a friend not long ago, days before he succumbed to his cancer. He was recalling some of the treatment decisions he and his doctors had made along the way. Before deciding on some rather invasive surgery, the doctor had said he felt obliged to tell him that the chances of the surgery being successful were only about 5 percent.

"That's OK, Doc," my friend told him. "I figure I'm going to be in the 5 percent." (He wasn't, as it turned out, but he exercised his prerogative to think that way.)

That was his decision. Other patients in similar situations may decide differently, and I figure that's OK, it's their road they're traveling and no one else's. Yet, my friend chose to exercise his freedom of choice and not let statistics rule him.

He intuitively understood what President Faust is talking about. He knew he was an "N of 1."

The same would go for someone making the opposite choice, even if the odds looked very much better. I've known older patients who declined surgery or treatment when the chances of success were as high as 50 percent. The explanation went something like this: "I've lived long enough, and at my age, I can't expect to live much longer. I choose not to accept the harsh side effects and long recovery the doctors are talking about. Quality of life is important to me. I want to enjoy the days I have left."

According to "N of 1" thinking, that's OK, too.

Yes, there's a lot of science involved in the treatment of cancer. But there's also an art to it.

It's the art of living.

"If I take the wings of the morning
and settle at the farthest limits of the sea,
even there your hand shall lead me,
and your right hand shall hold me fast."

- Psalm 139:9-10

December 27, 2010 - Putting the "Death Panel" Myth to Rest

A New York Times article published on Christmas Day reports the good news that sanity has finally prevailed in the halls of government, as further regulations connected with the landmark healthcare-reform legislation enable Medicare funding for advanced end-of-life planning.

This news comes - to my mind, anyway - with a particular sense of relief. Opponents of healthcare reform have cynically and cruelly exploited dying people for their own political gain, by raising up the myth of government "death panels." According to that improbable scenario, government bureaucrats would have played a role akin to that of the infamous Dr. Mengele at the Auschwitz concentration camp (he was the camp physician who decided, with a wave of his baton, which new prisoners would go to the barracks and which would be sent directly to the gas chambers).

What the original legislation, in fact, provided was money to pay for annual doctor's office visits - for those critically-ill patients who want them - at which the various options for end-of-life care would be explained. One significant option is hospice - the part of the medical community in which Claire works, providing bereavement counseling and support.

The recent news is that the Obama administration has quietly restored this funding - not through legislation this time, but through regulation-writing (it had been in the original bill, but was pulled out in reaction to the "death panel" kerfuffle).

I'm especially glad to see this funding restored because of situations I've seen arise time and again in my ministry (and which Claire sees much more often in hers). Far too often, patients avoid having the hospice discussion with their doctors and family members until death is imminent and it's too late for them to derive much benefit from hospice care. When patients' time on the program is measured in hours rather than days, there's not a lot the hospice team can do for them.

Hospice care is not intended to be delivered in such an accelerated time frame. Yes, it's designed for patients who are expected to live fewer than six months, but a lot can be accomplished in that period of time, improving significantly patients' comfort and quality of life.

Talking about hospice is NOT giving up on patients. Quite the contrary, it's about empowering seriously ill patients to live the remaining portion of their lives as they wish. If patients and their families decide to continue aggressive treatment, so be it. If they opt, instead, to go home to a hospital bed in the living room, with advanced pain control and unlimited visits from their grandchildren, then that's their decision and it ought to be respected.

Irrational fear of "death panels" has kept people off hospice care who should have been receiving it much sooner - and would very much have wanted it, had they understood the patient-centered philosophy behind it. This restored funding will allow doctors to plan significant time for consultations that will equip patients and family members to make their own, carefully considered decisions about backing off from aggressive treatment and focusing more on palliative care.

Time and again, I've heard bereaved family members say they wish their loved one had signed onto hospice earlier, but they just didn't have a sense of what hospice is all about until it was nearly too late.

Chalk this one up as a triumph for patients' rights: to make their own, well-informed healthcare choices.

December 2, 2010 – 5-Year Cancerversary

Hard to believe it’s been five years already, but it has. Five years ago today, I was diagnosed with cancer.

So much has happened since then. Those early days of uncertainty and fear, knowing that life would never be the same again. Telling the kids. Telling the church. Arranging for time off, to coincide with the predictable valleys in the chemo cycle. Persistent thoughts of dying, even though Drs. Lerner and Portlock and everyone else in the know kept assuring me I have one of those so-called "good" cancers - one that usually responds to treatment.

Once the treatment train had left the station, it picked up speed incredibly fast – or so it seemed. One day, I was given the news. The next, I was being wheeled into an operating room to get my port implanted.

My story didn’t unfold quite that fast, of course. That was just the way it felt to me. There was actually about a month between diagnosis and my first dose of chemo. I can’t recall much of what I did during that time. Once cancer enters your life, it’s hard to think of anything else. I felt numb.

Used to be, patients who reached their five year cancerversary without recurrence were considered cured. I still run into people who think that’s the case. In reality, cancer is such a multifaceted phenomenon that it’s impossible to generalize.

In my case, remission only lasted eight months – although, in truth, the cancer was probably there all along, lurking below the radar of those high-tech scans. “Watch and wait” was Dr. Lerner’s recommendation, confirmed by Dr. Portlock. Just sit tight. No need to shoot any arrows from the quiver until we absolutely have to. You have no symptoms. So, just sit tight. Trust us. This really is a sensible approach, even though it sounds like lunacy.

So, here I am today. Still watching and waiting. I’ve no idea how long it will be before the burgeoning population of cancer cells will reach umpteen million (or whatever the magic number is) and we’ll be discussing which treatment to try next.

Already, there are NHL treatments out there that weren’t available at the time I was diagnosed. Most aren’t quite ready for prime time, but it won’t be long now. Chances are, by the time we’ll be thinking seriously about treatment again, there will be some options available that weren’t even conceived at the time I was first setting out, five years ago.

There’s reason for hope, to be sure. Lord willing and the blood counts don’t rise, I’ll be here to observe quite a number of cancerversaries yet to come.

June 6, 2010 - Our Most Elusive Possession

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

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

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

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

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

Preach it, brother!

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

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

- 1 Timothy 6:6-8

January 9, 2010 - Everything In Its Time

Today I run across an inspiring story on National Public Radio: the saga of one Seun Adebiyi, who has dreams of becoming – I am not making this up – Nigeria’s first contender in the Winter Olympics one-man sledding event called skeleton.

Seun (who pronounces his name “Shawn” when here in the United States) missed making the Nigerian Olympic swim team by a tenth of a second. So, he turned his attention to winter sports, setting his sights on the skeleton event. A student at Yale Law School, who was brought to this country as a child by his immigrant mother, Seun sounds very American. Yet, he does have Nigerian citizenship – which means that, as he trains 5 hours a day on the skeleton track outside Salt Lake City, he’s possibly the only Nigerian aspiring to represent his country in this event.

Seun’s circum- stances sound like those of the Jamaican bobsled team that was the subject of the 1993 Disney film, Cool Runnings – with one exception: he’s just been diagnosed with cancer.

And not just any cancer. Seun’s got two aggressive forms: stem-cell leukemia and lymphoblastic lymphoma.

The most promising treatment for him is an allogeneic stem-cell transplant, one requiring closely-matched cells from a living donor. (It’s the type of stem-cell transplant I’d need to have, should it ever come to that.)

Seun’s problem is that people of African descent aren’t well-represented in the donor registry – and for patients who are actually from Africa, the outlook is even bleaker. Still, that didn’t stop Seun and his mother from traveling to Nigeria recently to set up that country’s first bone-marrow registry.

Seun’s best chance lies in a cord-blood transplant, which he’s going to be having soon at Memorial Sloan-Kettering Cancer Center in New York City.

The online audio of NPR’s story on him is well worth the 5 minutes of your time it will take to listen to it. As NPR correspondent Mike Pesca summarizes Seun’s description of his situation, “Living with cancer is like living an extremely concentrated, extremely potent version of life.”

And how. It’s an apt description of what it feels like to go through the cancer-treatment experience.

Then, Pesca relates another thing Seun said to him: “There is a time for all-out effort, and then there’s a time for surrender.” Seun’s approach is to pull out all the stops during the weeks leading up to his transplant, training for that ordeal with the same intense effort he’s brought to his Olympic bid. Yet, he knows there will come a time when he can do nothing but trust the expertise of the Memorial Sloan-Kettering doctors and the technological wizardry they have at their disposal.

Truly, there is a time for everything in life – as I reminded a family just yesterday, at the funeral of their 104-year-old matriarch. At the funeral home, I read these beloved words from the third chapter of Ecclesiastes:

“For everything there is a season, and a time for every matter under heaven:
a time to be born, and a time to die;
a time to plant, and a time to pluck up what is planted;
a time to kill, and a time to heal;
a time to break down, and a time to build up;
a time to weep, and a time to laugh;
a time to mourn, and a time to dance...” (Ecclesiastes 3:1-4)

On an on the ancient poem goes, weaving its way in and out of all life’s adventures. Its words sound a very different note at the funeral of a centenarian than they do on the eve of a twentysomething’s risky stem-cell transplant. Yet, the best any of us can do, regardless of our circumstances, is to trust that, in God’s providence, there is indeed a time for everything.

I’m beginning to learn, myself, that this has much less to do with the duration of life than with its quality. A long, serene run of 104 years is a beautiful thing. But then, so is a young man’s 80-mile-an-hour dash down an icy hillside in search of Olympic gold.

Either way, I believe the Lord is standing by, to guide and to bless.

November 28, 2009 - Passing the 500 Milestone

Yesterday, as I posted my most recent blog entry, I passed a milestone. It was my 500th blog entry.

It’s hard to believe. In the 4 years or so since I’ve been writing this blog, chronicling my experience as a cancer survivor, I’ve somehow found that much to say.

Early on, the blog was all about giving a blow-by-blow account of my medical treatments. Later, as I went into, then out of, remission, then entered the extended period of watchful waiting I’m presently in, I’ve had less to share about my medical condition. That’s a good thing, because no news is good news. I’ve naturally moved over into commenting on some other topics I now look on differently because I’m a cancer survivor – particularly the healthcare-funding debate in this country, and general survivorship issues.

I’d like to thank you, my readers, for hanging in there with me through all this. I plan to continue posting here as long as folks are finding the blog helpful to their own life journeys. Please do use the “Comments” feature to let me know what you’re thinking about my postings. I’m still getting 50-60 visitors a day, so I figure I must still be addressing some real needs.

Grace and peace and life abundant to all.

Carl

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.

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.

April 8, 2009 - Michael J. Fox

Michael J. Fox was the guest on Monday’s The Daily Show with Jon Stewart. I watched it a day later on our DVR.

Fox, of course, is a Parkinson’s Disease survivor. I found him inspiring. Take a look and see for yourself:

The Daily Show With Jon Stewart	M - Th 11p / 10c
Michael J. Fox
comedycentral.com
Daily Show Full Episodes Economic Crisis Political Humor

I was struck by the fact that Michael kept his 1991 diagnosis secret for seven years. Undoubtedly, that was a tough time for him. He was one of the hottest talents in Hollywood, but he was leading a secret life as a chronic-disease patient. The knowledge of his slowly-worsening situation was hanging over his head.

Fox tells how he went a little crazy during those years – drinking too much, that sort of thing. But then, he came to a point where he grew comfortable with his diagnosis. He stopped fighting it. He learned to go with the flow. I wonder if that coincided with his going public with his medical situation?

It’s always tough to live a lie. Little by little, it tears you up inside. I’ve never regretted going public with my cancer diagnosis, as soon as I was sure that’s what it was.

I could relate to these words of his: “Once you accept it and fix it in space and say, ‘This is this and it’s not anything else and it’s not going to go away any time soon, and you're going to have to deal with it’ then you open up to all the stuff that’s around it and say, ‘Wow, this gives me an opportunity to help people out, this gives me an opportunity to look at things in a way that I might not have looked at them before...’”

Fox even gave voice to the cancer survivor’s mantra, at one point: “It is what it is.” How many times have I heard people with cancer say that?

Note it, and move on.

There’s a kind of strength that comes from facing our life-situation honestly, and trying to live as resolutely as we can in the present. It does little good to pine for our pre-diagnosis days, nor does it help us to obsess about the future. The art of living with a chronic disease lies in living in the now.

Accept it. Fix it in space, as Fox says. Admit, “This is this and it’s not anything else and it’s not going to go away.” Then, go searching for the blessings that are still around: and there are many.

Thanks, Michael. You’re a great example for all of us.

April 1, 2009 - A 150th Birthday Party

On Sunday afternoon, I had a small role in the worship service commemorating the 150th Anniversary of the Presbytery of Monmouth – the regional governing body of our denomination, the Presbyterian Church (U.S.A.). Monmouth Presbytery has administrative responsibility for 47 churches in this part of central New Jersey.

All I did was read a brief scripture lesson, but the Asbury Park Press photographer chose that moment to snap the color photo that graced the front page of our local-news section on Monday. There I was, right in the middle of it.

For those of you blog readers who’ve been wondering what I look like as I’m doing my preacherly thing, here it is:

The church is the Presbyterian Church of Toms River, the largest in the Presbytery. It also happens to be the church in which I grew up, and where I served for a few years in the 1980s as Assistant Pastor.

150 years is a long time. Far longer than any human lifetime. Some of the congregations of the Presbytery are even older. Shrewsbury was founded in 1672. Old Tennent dates back to 1685. The church I serve, Point Pleasant, is a youngster compared to these. It was founded in 1882.

It’s often pointed out that corporations, which the law treats as though they were persons, are immortal. The same can be said, I suppose, of churches.

The preacher for the occasion was Rick Ufford-Chase (a former Moderator of the General Assembly, the highest office in the denomination). He made a lighthearted remark about maybe coming back 50 years from now for the Presbytery’s 200th anniversary. Rick is only 6 or 7 years younger than me, which would put him in his mid-90s on that occasion. I’d be 102.

Chances are, I won’t be around for the bicentennial. I’m not even figuring in the lymphoma as I say that, just the ordinary wear and tear of life (not to mention the actuarial tables for males in our culture). Yet, like a business corporation, the church of Jesus Christ lives on, notwithstanding.

Or, maybe not like a corporation. More like another sort of corpus, or body. The Body of Christ.

Now, that’s immortality.

"Now you are the body of Christ and individually members of it."

- 1 Corinthians 12.27

March 15, 2009 - Magical Thinking

Reading in Dr. Wendy Harpham’s After Cancer: A Guide To Your New Life, I come across a passage I think may speak to my situation. Ever since my cancer treatments ended, and particularly so since I went out of remission, I’ve found it difficult to plan for the future. I’ve tended to take things as they come, responding much more passively than ever I used to.

It’s a consequence, I’m sure, of the disorienting experience of going from reasonably good health to treatment for a life-threatening disease. During my treatments, I suddenly found myself wondering if I’d ever get to do the things most people expect to do in their middle and later years: see my children get married, be blessed with grandchildren, experience further professional advancement, retire, leave a legacy of some sort, etc. Suddenly, it seemed like everything could be abruptly cut off. I found myself grieving things I wasn’t even sure I was going to lose.

Since entering remission – and then, after that, the uncertain, watch-and-wait period I now find myself in – I’ve outwardly returned to normal activities, and even taken on a few more. I’m crazy busy, having thrown myself back into not only my pastoral duties and my part-time seminary teaching, but also taking on new work as our presbytery’s Stated Clerk. I’ve made myself so busy, in fact, that I don’t have to look very far into the future. (How convenient.) Just keeping up with the present is taking all my energies.

Perhaps I’m pursuing what Wendy calls magical thinking:

“Planning for the future means having confidence that the plans will come to fruition. You lost a lot when you got cancer. You feel vulnerable. You want to protect yourself from avoidable loss and pain. If, on any level, you are insecure about your future , you will feel anxious when you start to make plans, because you do not want to lose any more.

Sometimes a component of magical thinking makes it difficult for you to make plans. You may feel that if you make plans, you are setting yourself up for a problem that will sabotage the plans. ‘If I don’t make plans, there won’t be any plans to get ruined. If there are no plans to ruin, I won’t get cancer.’” [Wendy Harpham, After Cancer: A Guide To Your New Life (Norton, 1994), pp. 288-289.]

A little later, she gives this sage advice:

“Waiting for everything to be back to normal before you see yourself as really living is a waste of precious time. There is no time like the present.” [p. 298.]

Things are never going to get “back to normal” for me, medically speaking. Even if I enter into a solid remission and stay there, I’ll still have to keep going for scans, facing the reality of a possible recurrence. The only sensible response is to keep on living, in spite of it all.

Easy to say. Hard to do...

January 22, 2009 - Method in the Madness?

I’ve been in Bradenton Beach, Florida this week, attending The Homiletical Feast – a preaching conference I attend each year. Not that Florida has offered any balmy weather: it’s been as low as 32 degrees here this week. The exegetical papers we’ve considered in the group have been high-quality, as usual, and the discussion and mutual support has been more valuable than words can say.

These 16 or so ministers are among my most valued colleagues. Over the years, they’ve become friends as well. We only meet once a year, but the four days we spend together are a time of talking, sharing and supporting one another, as we reflect on this demanding occupation.

Earlier today, one of my colleagues shared a poem by Larry Smith called “What You Realize When Cancer Comes.” He found it on Garrison Keillor’s The Writer’s Almanac program on American Public Radio. Here’s an excerpt:

“You will not live forever – No
you will not, for a ceiling of clouds
hovers in the sky.

You are not as brave
as you once thought.
Sounds of death
echo in your chest.

You feel the bite of pain,
the taste of it running
through you.

Following the telling to friends
comes a silence of
felt goodbyes. You come to know
the welling of tears.

Your children are stronger
than you thought and
closer to your skin.

The beauty of animals
birds on telephone lines,
dogs who look into your eyes,
all bring you peace.”

The poem ends with these words:

“You are in a river
flowing in and through you.
Take a breath. Reach out your arms.
You can survive.

A river is flowing
flowing in and through you.
Take a breath. Reach out your arms.”

The poem causes me to reflect on many of the things I’ve lived through, these past three years or so. One of the things I’ve struggled with, off and on, is the question: “Why?” What purpose is there in all this?

Smith’s poem captures the transformational aspect of cancer. When those of us who undertake this journey – however unwillingly – complete it, we are not the same people as when we began. Every step we take along the road changes us.

Thinking theologically, I’m led to ask once again what long-term purpose God may have in mind for my ministry. In allowing me to get this disease, curing me from its aggressive variety, then miring me in the interminable limbo of indolent lymphoma’s “watch and wait,” what’s God’s point? If it’s true, as we Presbyterians are inclined to think, that God calls men and women to ministry, then what call could there possibly be in cancer?

The Larry Smith poem suggests some possible reasons. “You will not live forever.” I have a visceral awareness of this truth, now, that has hitherto been a mere abstraction. “You are not as brave as you once thought.” No, indeed I’m not. I’m learning to live with uncertainty, and still rise to the challenges of daily living. “You can survive.” Yes, I can. I’m doing it. One day at a time.

I’ve had some difficulty sensing God’s will in the midst of follicular lymphoma. Aggressive cancer I can understand: it’s a challenge to be met, or die trying. Cured cancer I can likewise understand: it’s a triumph to be celebrated. But, this neither-here-nor-there, neither healthy-nor-unhealthy limbo, stretching on into the interminable future: what’s God up to?

Maybe the purpose is to nurture my empathy, my ability to connect with others. I’m not the only person whose life is fraught with ambiguity, is lived out in the gray country of uncertainty. Maybe I’m meant to be a fellow-traveler and accompany others. Maybe I’ve been enrolled in a school of perseverance, so I may help others persevere.

January 15, 2009 - Retirement Planning

Yesterday, Claire and I returned from Princeton Theological Seminary, where we attended a two-and-a-half-day Pre-Retirement Seminar sponsored by the Presbyterian Church’s Board of Pensions. Not that we have plans to retire anytime soon. That, God-willing-and-the-cancer-don’t-flare-up, is 15 years off at least. We went because the Board of Pensions encourages ministers over 50 to attend one of these conferences, and to bring their spouses with them. The idea is to get a head start on long-term financial planning.

The Presbyterian Church has a mighty good pension plan. It’s fully funded, and conservatively run – something we plan members surely appreciate in uncertain times like these. The sticky wicket, for those of us pastors who live in manses, is where we’ll live in retirement. The Board’s encouraging us to start thinking about the answer to that question now.

Claire and I found it a positive experience. The leadership – especially the financial-planning speaker – was excellent. Just what we budget-challenged liberal-arts graduates needed, even if it did feel odd to be thinking about retirement in our prime working years.

There were 20 or so participants, all told. Ages ranged from people in their early 50s, like us, to one man who’s just a few months from the proverbial gold watch.

My active cancer diagnosis sets me apart from my fellow participants. Will I make it to age 66 and 4 months – the threshold when Americans in my birth year can collect full Social Security benefits? Or, will disability be staring me down sometime before then, as a stem-cell transplant or some other treatment looms? If disability is in my future, will I recover fully after treatment and return to full-time ministry? So many unanswerable questions...

The more time I put between myself and the aggressive large B-cell lymphoma I once had, the more retirement planning makes sense. Indolent NHL is kinder, that way. When Dr. Lerner assures me I could still be doing the watch-and-wait thing years from now, I take him at his word - which is why I can even go to a conference like this in the first place.

Questions like these are, of course, imponderable. The only thing to do is to plan for the best-case scenario, and hope I’m prepared for anything worse that may come my way.

The conference program also included a presentation on maintaining personal health. I’ll be the first to admit I’ve got a long way to go in that area. I’m vigilant about anything cancer-related, of course, but anyone who knows me knows the diet-and-exercise thing is a tough sell. The spirit is willing on that one, but the flesh is weak.

So, Claire and I left Princeton with a lot to think about. One of the benefits of this particular meeting was that it encouraged us in ministry – that most other-directed of occupations – to try thinking about ourselves, and taking care of ourselves, for a change.

Point well taken, Board of Pensions. I’ll try to do better.

November 8, 2008 - Unfinished Business?

I just picked up a new book that promises to help me make sense of my situation as a cancer survivor. Oddly enough, it was written by a man who’s dying.

Forrest Church has served more than 30 years as pastor of All Souls Unitarian Universalist Church in New York City. Love & Death: My Journey Through the Valley of the Shadow (Beacon, 2008) is the newly-published memoir of his journey through esophageal cancer.

What attracted me about this book, when I first heard it mentioned on NPR’s October 27th Fresh Air program, is that it was written by a preacher. Like me, Forrest Church has struggled to figure out how to be a cancer survivor while at the same time striving to bring a message of hope and peace to his congregation. A challenging task, that – finding the right balance between honesty and privacy.

As I page through this fine book – one of those little volumes that’s best read slowly – I expect I’ll find more than one insight to share here in my little corner of cyberspace.



One of the things Forrest marveled at, when he was first diagnosed, was how calmly he received the news:

“One of the first topics I tackled – still probing it to test any hint of denial at its core – was the way I cut straight to acceptance on first hearing what appeared at the time to be a death sentence. I came up with an explanation for my ease of mind.... The key is unfinished business....

Don’t get me wrong. I wasn’t happy about the prospect of dying. I had things left to do in my life and regretted the interruption of all my splendid plans.... My acceptance, however, abided in a deeper place. I was free to die, I realized, because, although I had much ongoing business, I had no unfinished business. I had made peace with myself, my fellows, and with God” (pp. 90-92).

I’m still pondering that distinction Forrest makes, between unfinished business and ongoing business. I think he’s onto something there.

I remember, in those days of December, 2005 and January, 2006, how life took on a peculiar intensity, in a way I’d never before experienced. After months of uncertainty, I had been diagnosed for sure. I didn’t fight that truth, in my mind. I, too, cut straight to acceptance. I girded my loins for the struggle ahead.

It’s not that I went through life preternaturally calm. I was plenty scared. But what scared me was more the prospect of suffering than the prospect of dying. If I am to die, I remember thinking to myself, it is what it is, and that’s all there is to it. I’ve been talking about God’s love, professionally, most of my adult life. Pretty soon, I’m going to find out firsthand how real that love is.

It was actually liberating, in an odd way. Suddenly, much of the oppressive weight of ongoing business in my life slipped away. I no longer needed to bother with that trivial stuff. My life had a singleness of purpose, as never before. That purpose was to get well, or die trying.

Now, several years later, I find myself in this odd limbo of being out of remission but no longer needing active treatment. I could be in this in-between place indefinitely.

Do you want know something strange? I miss the singleness of purpose of those post-diagnosis days. I don’t wish the fierce malignancy back, of course, and I’d be perfectly happy never to undergo chemotherapy again. But somehow, I wish I could recapture that low hum of purposefulness that was the music of my days.

I suppose it’s a sort of wisdom the contem- platives gain, after years of focused prayer. They gain it without having to face down a potentially life- threatening illness. I believe it’s possible to achieve that degree of focus in life, purely by seeking it, but it’s terribly difficult. Only a very few of us achieve it, without a life-threatening crisis to help us along.

As the chemo nurses opened my veins and poured in adriamycin, that harsh medicine they call “the red death,” I was receiving another sort of medication that aided my soul’s healing. It was that singleness of purpose, that purity of heart. The Danish theologian Søren Kierkegaard once wrote a book called Purity of Heart Is To Will One Thing. That’s what I was doing, in those days. I was willing one thing.

“Blessed are the pure in heart,” says Jesus, “for they will see God.” (Matthew 5:8)

October 16, 2008 - Got Dem Watchful Waitin' Blues

Today I run across a couple new 3-minute web videos on the Lymphoma Research Foundation website. Several of them seem more or less made-to-order for my situation.

One focuses on twenty- and thirty-somethings with indolent lymphoma. I don’t fit that age category, of course, but I’m still younger than the average lymphoma patient. It’s a pretty good discussion on indolent disease, and how different it is, conceptually, from other cancers:

Click HERE.

Another describes the Watchful Waiting approach to treatment:

Click HERE.

“That’s one of the differences about indolent lymphoma that’s difficult for people to get past,” says one indolent lymphoma survivor on the Watchful Waiting video. “It’s always a present tense.”

Indeed it is. Other cancer survivors are either in treatment, or in remission, or they’re cured. They get some sort of resolution eventually. We indolent lymphoma survivors live in an eternal present.

The trick, I suppose, is to find some way to get our future back again, to escape that eternal present.

September 30, 2008 - A Surgeon's Perspective on "Watchful Waiting"

Flying back from Utah the other day, I finished reading Pauline W. Chen’s insightful memoir, Final Exam: A Surgeon’s Reflections on Mortality (Knopf, 2007). Pauline is a liver-transplant surgeon, which means she’s spent her professional life at the edge of high-tech innovation. Sometimes she’s part of the surgical team that helicopters in to harvest organs from the body of a dying accident victim, pops them into an ice-filled cooler and flies them to a distant city. Other times, she’s on the receiving end of those precious deliveries, implanting the harvested liver into an otherwise-dying patient.

This work has given her a unique perspective on life and death. From the brain-dead body of a patient who’s breathing with the aid of machines, she salvages living tissue that just may save another’s life. It’s hard to imagine a more heroic occupation.

Far from celebrating transplant surgery’s technical razzle-dazzle, Pauline appeals for heightened awareness of the emotional side of medicine. She reminds her colleagues that, when the risks of surgery are too great and a patient cannot be saved, the doctor has a continuing responsibility to care for the patient’s emotional needs - rather than abandoning the person to others, out of fear of medical failure.

I was intrigued by this lengthy passage, in which she reflects on how the “watchful waiting” approach to treatment troubles many of her surgical colleagues:

“There is no mistaking the heady exhilaration you feel when you walk into the cool and ordered operating room, pull out all the technical gadgetry and wizardry of the moment, and within a few hours solve the essential problem. Surgery is a specialty defined by action. As a student of mine once said, ‘Surgeons do something about a problem, not just sit around and think about it.’

But surgeons are not alone in this doer’s paradise. While surgery, particularly liver transplantation, represents an extreme, even physicians in specialties with little or no ‘invasive’ procedures feel compelled to do. A patient visits with a problem, and the appointment is incomplete without a prescription for medications or tests or some tangible diagnosis.

Even medicine’s essential framework for approaching clinical problems – the treatment algorithm – presumes physician action. Frequently diagrammed in textbooks and medical journals, these algorithms outline step-by-step therapeutic plans for different diseases. For every point along the algorithm there are several possible outcomes that in turn may have several of their own possible therapeutic options. On no branch of the decision tree, however, is there a box reserved for Do nothing or Hold tight or Sit on your hands. Instead, if no treatment is required, we describe the waiting as an active, not a passive, period. Treat with intravenous antibiotics for six weeks and then reassess may be part of the algorithm. Or we may decide on a course of what is euphemistically termed expectant management or watchful waiting, as if our therapeutic intervention is just being held temporarily at bay. Even in deciding to wait or do nothing, we imbue these periods with action. It is as if we are dynamically managing time and at the end of that time there may be more treatment for us to initiate.

We can confuse these interventions with hope, particularly at the end of life, and equate more treatment with more love. Any decision to hold or even withdraw treatment becomes near impossible, and not treating a patient the moral equivalent of giving up. Moreover, once treatments have started, there is an obligation to the interventions themselves. Having done so much already, doctors – and many patients and families – find it nearly impossible to let all their efforts simply drop.

In an attempt to display competency or undying love, we lose sight of the double-edged nature of our cutting-edge wizardry. We battle away until the last precious hours of life, believing that cure is the only goal. We inflict misguided treatments on not just others but also ourselves. During these final, tortured moments it is as if the promise of the nineteenth century has become the curse of the twenty-first.” (Pp. 147-148)

Quite naturally, I’ve been inclined to view the soul-numbing tedium of watchful waiting from my own perspective as a patient. Pauline’s book has helped me glimpse it from the viewpoint of my doctors as well. Turns out, we both wish we could do more.

The contemplatives have long taught that intentionally doing nothing – doing it with our whole being – is one of the most difficult of spiritual tasks. This is the point Martin Luther was getting at when he observed how his puppy jumped up on the table, then waited expectantly for a morsel of food dangled from the hand of his master. “Oh, if I could only pray the way this dog watches the meat!” Luther reflected. “All his thoughts are concentrated on the piece of meat. Otherwise he has no thought, wish, or hope.”

Fully engaged and mindful waiting is my own spiritual challenge these days. There’s something in me that wants to reach relentlessly into the future, fretting about what treatment may await me down the road. Ultimately, this is an abdication of the present discipline of waiting that has been given me.

“Let us then labour for an inward stillness –
An inward stillness and an inward healing;
That perfect silence where the lips and heart
Are still, and we no longer entertain
Our own imperfect thoughts and vain opinions,
But God alone speaks in us, and we wait
In singleness of heart, that we may know
His will, and in the silence of our spirits,
That we may do His will, and do that only.”

– Henry Wadsworth Longfellow, “Christus: A Mystery,” in The Poetical Works of Henry Wadsworth Longfellow, vol. 5 (Houghton Mifflin, 1851), pp. 313-314.

September 26, 2008 - Altitude

I've been living, for the past several days, at over 8,000 feet above sea level.

In my capacity as Stated Clerk of the Presbytery of Monmouth (a position I hold in addition to my pastoral responsibilities at Point Pleasant Presbyterian), I've been attending the Fall Polity Conference of our denomination. The conference is being held at the Snowbird ski resort in Utah: a very pleasant place to be, amidst some breathtaking mountain scenery. Most church conferences I attend aren't at such a luxurious place, but the church got a deal on the accommodations because it's still the off-season.

As with other times I've been at this altitude, I'm really noticing the effect of the lower oxygen levels on how I feel. Walking up a set of steps I'd ordinarily think nothing of, I find myself having to pause at the top to catch my breath.

I suppose this is what being elderly feels like - or, perhaps, what being anemic feels like. The quantity of oxygen circulating in our blood is so crucial to health and well-being. If I were here for a longer period of time, I'd acclimate to the higher altitude and would eventually return to feeling normal. I fly back home tomorrow, though, so the only thing that's going to end my low-level feelings of fatigue will be stepping off the plane at close to sea level.

Back during my chemo treatments, the doctors were closely watching my hemoglobin levels. I was fortunate in that my red blood-cell levels never dropped below normal, which would have made it necessary to take drugs like Aranesp or Procrit to build them back up again. I felt plenty weak, though, even with my blood cells at normal levels.

The persistent feeling of shortness of breath brings back my memories of cancer fatigue - how, during my final weeks of treatment, I found it difficult even to walk around the block.

It's all in the blood - and, as long as I've got a blood cancer, I'm going to find myself wondering, from time to time, whether I'll ever experience such feelings again.


"In God's hand is the life of every living thing
and the breath of every human being."
- Job 12:10