July 23, 2008 - Early Mid-Life Crisis?

The more I move through this journey of cancer survivorship, the more I’m coming to realize it’s a continuing process. Being a survivor is different one month after treatment ends than it is a year, or two years or more, afterwards. We continue to grow into this reality called survivorship.

I don’t imagine this is something a person who hasn’t been through it can easily understand. With most other medical situations – say, for example, an infection that’s successfully treated, or the hernia-repair surgery I had a few months ago – when it’s over, it’s over. Cancer is never over, not even if remission continues into the long term. There’s always the possibility it could return.

Here’s another quote from Glenna Halvorson-Boyd, from Dancing in Limbo: Making Sense of Life after Cancer (which I’ve now finished reading). Here, she shares a long-term survivor’s perspective – reflecting also the perspective of others, that she’s learned about through a number of interviews:

“At some point, those of us who have survived cancer stop wondering why it happened. We get over the posttreatment letdown. We tolerate our fears of recurrence in the full knowledge that there is no sure cure. Our relationships are renewed on current terms. Life goes on.

While our preoccupation with cancer fades, our awareness of mortality remains. That heightened awareness guides our lives, whether we recognize it or not. It creates anxiety, but it also reminds us that we are alive. Our time on earth is short and precious. This is the stuff of great art and trite greeting cards. Only a writer of Franz Kafka’s perverse gifts can get away with stating the obvious, ‘The meaning of life is that it stops.’ When we use a brush with death to refocus our lives in more authentic and meaningful ways, we are making the best of the situation, to be sure, but we are not romanticizing our misfortune. Cancer is not glamorous. Surviving cancer is neither romantic nor heroic. It is our good fortune, and it is forever a part of our lives. We may feel stronger for having endured the trials, or we may feel more vulnerable. Probably we feel both, on alternate days or even at the same time. Sometimes we know that ‘sadder but wiser’ is a cliché because it is true....

For some of us, having had cancer means that we don’t have time to waste; for others of us, it means that wasting time is our greatest luxury. For some, it means pushing to achieve our ambitions; for others, it means releasing ourselves from worldly ambition. As life goes on, we each sort out what it means to be a survivor.”

– Glenna Halvorson-Boyd and Lisa K. Hunter in Dancing in Limbo: Making Sense of Life After Cancer (Jossey-Bass, 1995)

At the time she was writing, Glenna was reflecting back on more than ten years’ experience as a mouth cancer survivor. She had surgery that removed a part of her tongue as well as other tissue inside her mouth, and she had to learn how to speak again. Unlike me, cancer has left Glenna with a continuing disability, but the change she’s talking about is deeper than the merely physical. It’s a matter of soul.

I’m especially struck by what she says in the last paragraph, above, with respect to ambition. Some survivors want to aggressively pursue some long-deferred dream. Others want to shed worldly cares and learn to live as slowly and deliberately as Thoreau did beside Walden Pond. I think I’m somewhere in between. Some days, I want to go seek a call to some tall-steeple church and write a bestselling book. Other days, I just want to settle in where I am, be as good a husband and father as I can be, and simply try to live as authentically as I can. At this stage in my survivorship, I’m experiencing major ambivalence.

Here at our little cabin in the woods, ever since Claire ran out of vacation days and had to return home, I’ve been feeling that tug in two different directions. I’ve got some major writing projects in the works – most urgently, an overdue third installment of a preachers’ commentary on Cycle A of the Revised Common Lectionary. CSS Publications is going to combine this manuscript with books I’ve already written on Cycle B and Cycle C, and bring them out as a single volume. This morning, I finished my draft of Cycle A, and – once I drive into Plattsburgh, to my favorite wireless hot spot in the Borders bookstore café – I’ll e-mail it off to my editor. I’ve still got a good bit of work yet to do, on some additions the publisher has requested for the previous two volumes. It will be a good feeling to finally finish that multi-year project, which I began before my cancer diagnosis. I just may be able to finish it before my vacation ends in a couple of weeks.

I have to admit, though, I don’t have quite the fire in my belly for this project as I did when I began it. It’s all part of that ambivalence I’m feeling. Do I want to be one of those survivors Glenna talks about, who’s eager to “achieve worldly ambitions”; or, would I rather “release myself from worldly ambitions?” I’m still trying to figure that one out.

Maybe I’m having an experience similar to that of a testicular cancer survivor named Neil, whose story Glenna tells:

“Another cancer survivor described his cancer experience as an ‘early midlife crisis.’ Neil was thirty-two when he was diagnosed with testicular cancer twenty years ago. Although the prospects for a cure are quite good today, back then he faced almost certain death. Neil fought for his chemotherapy and became one of the early successes in the treatment of testicular cancer. When faced with death, he took charge of his life. As he puts it, ‘At thirty-two, I woke up to the fact that I’m going to die, and... I don’t want to waste my time. So you recognize that your time is limited and precious, and that you... have some control over it.’” (p. 147)

Some people go out and buy a red sportscar to celebrate their mid-life crisis. I got lymphoma.

I should have bought the sportscar instead.

June 2, 2008 - Continuing Care

My mother’s up visiting, from Chapel Hill, North Carolina. The other day she mentioned to Claire and me that she’s considering moving back up to New Jersey. She loves living at Carol Woods, the Continuing Care Retirement Community where she’s been for the past 5 years or so – but, ever since my cousin Judith left her tenured full professorship at the University of North Carolina for a professorship at the University of Southern California, she’s missed having family around.

We'd enjoy having her up here. North Carolina's a nice place, but it's pretty far from here.

So, today, at her request, I drove her around to a couple of CCRCs in this area: Seabrook in Tinton Falls and Harrogate in Lakewood. Both are beautiful places. Both describe their residents’ experience as “like living on a cruise ship on land” (a bit of hyperbole, to be sure, but not that far off the mark).

It remains to be seen whether Mom will actually make the move – there’s a lot to consider, like costs, waiting lists, and the like – but the whole experience got me to thinking. As we listened to the marketing spiels, I was reminded again of how so many members of these communities are in their high 80s, 90s, or even above. These CCRC facilities – virtually unknown 30 or 40 years ago – have flourished as American life expectancies have increased. They’re really designed for folks in the new, second stage of retirement, which can go on for years and years.

What about me? Will I make it to the point where Claire and I will be considering a place like this someday, many years down the road?

Before I had cancer, I might have thought so. Now, I’m not so sure.

It could still happen. They say more and more people with “incurable but treatable” indolent lymphomas like mine are living until some ailment other than cancer does them in.

At age 51, it seems way too early to be thinking about retirement. Yet, this is the age when such thoughts do begin to drift across the surface of the mind. The good news is, with all the hopeful signs emerging from the world of lymphoma treatment, it’s not an unreasonable thought to entertain.

March 15, 2008 - The Bucket List

Yesterday, Claire and I went to see the film, The Bucket List, at our local second-run movie theater. We don't get out to many movies in theaters, and this is one we'd meant to see on its first time around, but missed. We're glad the Beach Cinema in Bradley Beach gave us a second chance.

In case you haven't seen it or read about it, the film is about billionaire executive Edward Cole (Jack Nicholson) and blue-collar mechanic Carter Chambers (Morgan Freeman). These two men are sharing a hospital room on a cancer ward when they both learn they have fewer than six months to live. They decide to stop behaving as though they are already dead. Bankrolled by Edward's substantial fortune, they check out of the hospital and live their lives to the fullest in the short time they have left. Living life to the fullest, for Edward, involves field trips like skydiving, visiting the Pyramids and getting a tattoo – macho activities that set the ol' adrenaline a-pumping. Carter's ideas are more modest and more values-driven – "witness something truly majestic," "help a complete stranger" – although he enthusiastically joins in on the race-car driving and touring the world on a private jet. All these are detailed on a scrap of paper from a yellow legal pad they call the "bucket list": the things they want to do before they kick the bucket, which they then scratch off the list, one by one.

It's a buddy movie for the cancer set. In any other circumstances, these two men would have been unlikely to become friends, due to differences in background, wealth, temperament and religious beliefs. Yet, they do become friends. The thing they have in common is cancer, and an awareness that their days are numbered.

The film's plot has been savaged by some critics for being contrived, but the fans evidently loved it. It was the number-one film in theaters for a time. Surely, a large part of its appeal is the chemistry between these two accomplished actors, but I think it also has to do with the way the film fearlessly takes on big, philosophical questions like the meaning of life, death and religious faith. The Bucket List doesn't supply a lot of answers, but the journey is a fine ride.

I was especially impressed by the role religious faith plays in the film. Edward, the over-the-hill hedonist, is a frank and rather prickly agnostic, declaring that the sum total of his belief is "We live, we die and the wheels on the bus go round and round." Carter gently declares his faith in God, although he admits it's not based on empirical evidence. That's what faith is all about, he tells his new friend. To him, faith is clearly not a truth distilled from empirical analysis. It's not something you deduce. It's something you do.

Does Edward get the message? The film hints that he does, leading him to a sort of personal redemption, through repairing some long-sundered family relationships (I won't say more than that, so as not to be a plot-spoiler).

I've never been as sick as the two men in the film, but the scenes of them learning of their cancer diagnosis did strike a chord. News like that sure does pick you up, turn you around and put you back down in a different place.

Everyone should see this film. It's a gem.

June 16, 2007 - Labyrinth

I arise today at Presbyterian Camp Johnsonburg, where I’ve spent the night. It’s our church’s Family Retreat weekend. I like to attend at least a portion of this event each year, before heading back home to finish my sermon and conduct Sunday worship services.

Most retreat participants are families with young children. It’s a nice opportunity for them to get away and spend time together and with other families. Because Robin, our associate pastor, advises the planning committee, I have little to do, other than be here and enjoy the kids and their parents at play. It’s a refreshing change.

This morning, between the fishing and rowing on the lake and the noontime barbecue, I take a stroll over to the camp’s labyrinth – a walking-path in a sort of spiral pattern, whose boundaries are laid out with smooth stones. The camp staff put it in a few years ago, at the height of the labyrinth craze, as Christians were rediscovering this medieval devotional practice.

Most modern labyrinths are modeled after the famous one in Chartres Cathedral, in France. The idea is to spiral your way slowly into the center, then turn around and make your way back out again. Nothing could be more simple – or, more weighty with non-verbal meaning.

Johnsonburg’s labyrinth is pretty rustic, which is part of its appeal. It’s overdue for a little spring cleaning, but I don’t mind. Bright green seedlings poke their heads up amidst the stones, and the walkways are dusted with the crumbling detritus of last fall’s leaves.

From walking other labyrinths in times past, I’ve learned the best thing to do is to simply empty my mind and see what happens. This one has a rude wooden cross set up on a cairn of stones in the middle. When I reach it, I stand there and contemplate the cross for a moment, then realize I was probably meant to carry a stone in with me and place it on the pile. No matter. I see someone else’s stone lying on the ground nearby, evidently toppled from the top of the cairn. I pick it up and drop it onto the pile. Recycling is a good thing.

As I make my way out again, it occurs to me that this labyrinth-walk has some parallels to a human life. The first part of our lives is spent on a Godward journey, a spiritual quest. At one point or another – typically, closer to the end of life than its beginning – most of us start to become more concerned with what we’re leaving behind, than with what we’re attaining for ourselves. This is a fundamental turning, and for Christians it can occur as we’re contemplating the cross of Jesus. In one sense, it’s the vision of the cross that allows us to complete that turning.

Not that religious people have a monopoly on this kind of thinking. It’s a common- enough experience, in any human life – part of the process of maturation. The adult developmental psychologists speak of it as a season of generativity, as we come to think more about giving back than getting (see my November 20, 2006 blog entry for more on this).

Political scientists speak of second-term Presidents becoming increasingly concerned with their “legacy” – with how future historians are going to view them. That’s just one example of the secular form of this turning, which is expressed in Christian spiritual terms as a mid-life call to repentance and renewal.

At 50, I’m already a bit past the mid-point of my life (according to the average life expectancy for American men). The cancer adds a whole new ingredient. Sprinkle some positive CT-scan results into the actuarial stew, and you’d be well-advised to set the kitchen timer to go off a little sooner. I don’t think I’m being morbid or pessimistic as I say that. It’s just the facts – and, incidentally, the reason I got turned down last fall, as I tried to buy additional life insurance. Maybe I’ll be lucky, and live well into my 80s or 90s, as I always figured I would. My cousin Andy, who’s always touting the value of “good MacKenzie genes,” will insist I’m being alarmist in even thinking this way. But the actuaries, squinting through their Coke-bottle glasses, think not.

Cancer has carried me to the center of the labyrinth, to the place of turning, a bit sooner than most people. At the moment, I’m alone in this peaceful, woodland spot – yet, if I envision the company of all my fellow travelers walking beside me, most of them look older and grayer than me.

Of course, when I look at myself in the mirror, I realize I’m a good bit grayer than I used to be. It happens. Yet, still, I don’t feel ready to make the turning.

Enough of this. Back to the children.

November 20, 2006 - Anger

Today I come across a link to a blog written by another cancer survivor (brain, spinal and lung cancer). Leroy Sievers is his name, and he’s a writer and journalist – having worked for CBS News and ABC News. At one time, he was the executive producer of the Nightline television news program. Now he’s keeping a cancer diary much like this one, for National Public Radio.

Here’s something Leroy has written, reflecting on his last year or so of living with cancer:

“My body has changed in some ways that are obvious, and in others that aren't. I have a ridge in my skull where they cut it open to take out the brain tumor. You can feel the screws in the plates that hold my skull together. I'm heavier than I'd like to be. I put on weight when I was on steroids, and I haven't been able to work out much the last year. I hate the extra weight, though my doctors seem to think it's healthy.

Emotionally? Over the past year, I've hit the depths of sorrow, thrown in a little anger, too. Some hope, but probably not as much as I should have. Frustration. The whole gamut of human experience. And maybe that's one of the lessons here. In spite of the cancer, in spite of what we all go through, in the end, we're all just human. We're like everybody else. Except that we're not.

I try to make the most of my life these days. But I was really trying to do that before my diagnosis, too. My view of the future is a little cloudier; it's no longer open-ended. Not everything is possible anymore. I'm pretty much an optimist still, but that has been seriously tested, too.”

I’m interested to hear that Leroy mentions anger. I’m getting in touch with the fact that anger is an issue for me right now – sort of a delayed reaction to what I’ve been through.

During my chemotherapy, I simply didn’t have time for anger. I had to marshal all my emotional resources in the service of just getting by. The reality is, I’ve probably been stuffing my anger about the cancer for some considerable time. When I received first one clean PET/CT scan report, then another (in late May and early September) that was no time for feeling angry, either. I was supposed to feel relieved (and one part of me did, of course).

So what happens to all that suppressed anger? The answer seems to be that it’s coming out, inappropriately. I find I have a short fuse, these days, for petty frustrations. Other people around me have noticed it, too (in truth, they picked up on it before I did). It’s as though there’s a little voice in my head that keeps whispering, “You shouldn’t have to put up with this nonsense: you have cancer!”

I’m finding ways to procrastinate on things I should be doing – like dealing with the accumulated mail at home (comprised, still, of way too many medical bills and insurance statements, that only serve to remind me of my medical condition). Last month, I found it hard to get our 2005 income tax information to the accountant – tackling that job only at the last minute, just a day or two before the mid-October deadline for the extension I’d filed for last spring. Procrastination, of course, is a classic passive-aggressive reaction.

I have the most energy for creative endeavors, like writing and preaching. Having crashed hard into the brick wall of life’s limited duration, it’s as though the things that matter most to me are the things I create, things just may live beyond me. (Maybe, too, that’s why I felt so determined to apply for additional life insurance, during last week’s open-enrollment period.)

It’s possible that my cancer has bumped me up an adult-development stage. Back in seminary, we learned about psychologist Erik Erikson’s stages of adult development. The last three of his eight stages – with the typical ages and the challenges and tasks people typically face at those ages – can be described as follows:

Stage Six, Young Adulthood: 18-40 years, intimacy vs.isolation, love relationships
Stage Seven, Middle Adulthood: 40-65 years, generativity vs.stagnation, parenting
Stage Eight, Maturity: 65 years until death, integrity vs.despair, acceptance of one's life

According to Erikson, the 40s and 50s are the prime time for “generativity” – for creating that legacy we’ll leave behind when we die. What happens, I wonder, when a disease like cancer threatens to move the termination-point of life up a decade or two, or three? Does it mean, in my case, that cancer has abruptly shoved me forward, existentially-speaking, from “Middle Adulthood” into “Maturity” – way before I feel ready to be there? If that’s what I’ve been feeling (or, at least, worrying about), then it’s no wonder I’m feeling a bit angry. It’s the psychological equivalent of “the bends” – what scuba divers get when they surface too quickly.

How I sort all this out, I’m not sure. It’s clear that, remission or no remission, I’m still living with cancer, in an emotional sense.

November 1, 2006 - The Big 5-0

Several days ago, in a quiet way, Claire and I celebrated my 50th birthday. The actual day was October 28th. I was up at our Adirondack camp (vacation cabin) near Jay, New York. I’d been up there for a week of study leave, writing furiously, as the deadline for my latest book, the third and final installment of the Lectionary Preaching Workbook series, approaches.

I didn’t bolt out of town to avoid a big birthday celebration. Really. It’s just that last week was the only possible week I could get away, this fall. It was Reading Week at New Brunswick Theological Seminary, so I didn’t have to teach my weekly, Thursday-evening course.

On my birthday, Claire rode up to join me, taking the Amtrak train to Plattsburgh, New York. As I met her at the classic, Victorian rail station, I was surprised at how few people got off the train – no more than 4 or 5 individuals. This is no out-of-the-way spur, I thought to myself. It’s the Amtrak main line between New York and Montreal. Claire’s was the only train of the day connecting those two major cities, and it was more than two hours late (equipment problems). It reminded me of how we’ve let our nation’s once-mighty passenger rail system slip into near-oblivion.

So, if you want to know how I spent my 50th birthday, at least part of the time I was waiting for a train. I have to admit that was better than the earlier part of the afternoon, though, which I spent in a dentist’s chair. I’d lost a temporary crown the evening before, and was fortunate, indeed, to find a wonderful dentist, Dr. Michael O’Connor, who agreed to open up his Plattsburgh office on a Saturday morning, even though I’m not one of his patients.

The irony of that experience wasn’t lost on me. It was my fiftieth birthday, and my teeth were falling out. Literally. Tempus fugit.

It was good to see Claire, though. After driving back to our little house, we went out for a nice birthday dinner at one of our favorite restaurants, overlooking the rushing rapids of the AuSable River. The next day we enjoyed some quiet times, watching the snowflakes swirl (thankfully, they didn’t stick; it was still a little too warm for that). At one point, we were treated to the rare sight of a doe and a faun, foraging for food just outside our window.


How do I feel about turning 50? To be perfectly honest, it seems kind of anti-climactic. The sturm und drang of my cancer experience overshadows any piddling anxiety I might otherwise have felt, concerning this milestone birthday.

I’m not upset about turning 50. In fact, I’m glad I’ve made it this far. I was thankful for a quiet day, in one of my favorite spots, with my best girl by my side.

Claire and I are talking about throwing a bigger 50th birthday party, for both of us (she passed that milestone herself, in July). That party will do double duty as a belated end-of-chemo celebration for me, and also to commemorate Claire’s 15th anniversary of ordination as a minister. We’ll probably plan that celebration sometime later this month, if we can find a date that works.

Milestone birthdays are significant events, for most people – but maybe less so, for cancer survivors. For us, any healthy day is a good day.