August 31, 2010 - Creativity and Cancer Survivorship

Today I run across this little gem, an edited-down version of a talk by Monty Python member John Cleese on the subject of creativity:



Cleese may sound like an odd choice, at first, to give this sort of talk, but in fact - alongside the brilliant loopiness of his television and film projects - he’s long had interests in being a serious academic. For a while he was Rector of the University of St. Andrews, where I did my Ph.D. (alas, just before my time there, so I never met him). He transformed the Rectorship - until then, a largely honorific, student-chosen position - into one that engaged with the University administration on a number of issues of importance to students.

The advice Cleese gives here is down-to-earth and practical: especially what he says about the importance of “sleeping on” a problem, and also of constructing boundaries of space and time for regular, serious reflection.

Running his remarks through my theological filters, I’m struck by how many times he dances right up to the line of saying something spiritual, but never quite steps over it. (No surprise there, because he doesn't believe in God.) For example, when he attributes creative breakthroughs to the work of “the unconscious,” he could have said “the Holy Spirit” - but doesn’t. When he’s talking about the need to carve out time for focused pondering, he could have said “quiet time for prayer and contemplation” - but doesn’t. Certain parts of the Christian spiritual tradition, such as monasticism, insist on a daily schedule (the liturgical hours) that’s meant to nurture precisely the sort of creative engagement Cleese is calling for, and have produced some wonderfully creative people (ranging from Thomas Merton to Dan Berrigan to Sister Wendy of the art-appreciation videos). We Protestants may be a bit behind the curve on that one, but even we have traditions of spiritual practices that foster creativity and holy insight.

So, what does all this have to do with cancer survivorship? Cleese doesn't mention any connection, but I was led to reflect on something many of us survivors have experienced: how the enforced down-time of a chemotherapy regimen crashed into our otherwise busy, over-committed lives and forced us to spend time reflecting on things we’d otherwise never have thought about (or perhaps not until some long-postponed retirement - and maybe not even then, judging from what I’ve heard from some retired people who report being busier now than when they were working).

It was during the enforced down-time of my chemotherapy, for example, that this blog was born. Since having that experience, I haven’t even needed to try to schedule time for creative reflection. I’ve simply done it (at times to the detriment of some of my more routine obligations, but what’s a credit-card late fee or two, if you’re staying more spiritually grounded as a result of obsessing less over the small stuff?).

Whatever stage of the survivorship journey we’re in - whether in treatment, in remission, in relapse, or in that blessed land some are bold to call “cancer-free” - it helps to let go of the urgent worries from time to time and put them to rest for a while, even if only for the few hours of a good night’s sleep (if that’s possible, health-wise). It also helps to set up those boundaries Cleese is talking about, so we can grab a little time for ourselves, away from the frenetic rounds travel to one medical establishment to another, and trying to respond to some of the demands of our normal lives when we’re not doing that.

Stephen Covey, in a memorable illustration I’ve referred to earlier in this blog, called it “sharpening the saw.” If you don’t stop your ceaseless sawing - back and forth, back and forth - from time to time, and pause to sharpen the saw-blade, you’re doomed to steadily decreasing effectiveness.

So, let’s hear it for self-care, on the cancer-survivorship journey! A major part of self-care is refreshing ourselves at those creative wells, where our spirit is free to engage with the Spirit of the Lord.

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

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

Here’s an excerpt:

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

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

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

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

September 4, 2009 - PTSD?

Here’s a selection from a recent entry in the blog of Kaylin Marie, a young adult with cancer:

“...cancer doesn't end once you're in remission. It becomes a terrifying part of you, kind of like how Tom Selleck and his moustache have become one single entity. It haunts your dreams. I could go on.”

She then quotes D.H. Lawrence:

"...Slowly, slowly the wound to the soul begins to make itself felt, like a bruise, which only slowly deepens its terrible ache, till it fills all the psyche. And when we think we have recovered and forgotten, it is then that the terrible after-effects have to be encountered at their worst."

– Cancer Is Hilarious blog, August 13, 2009

That’s pretty heavy. But it’s the reality of cancer. Once you have the disease, the thought of it never completely leaves you.

There are triggers that can bring the whole experience roaring back. I remember I had an old, green shirt I used to wear to my chemo sessions. It had buttons down the front, which was a convenience when it came time to access my port. It was old and just a bit threadbare, which meant I wouldn't much care if some Betadine stained it. For months after my treatments were over, I could take one look at that green shirt and feel a wave of queasiness come over me. The shirt was a trigger.

The good news is, this sort of thing does get better with time. I don’t imagine Kaylin Marie has discovered that yet, because her treatments were so much more recent than mine. Yet, even so, that shirt will be, forever after, my chemo shirt. It hangs in the closet. I rarely wear it. These days, though, I can stand to look at it without it carrying me instantly back to the chemo suite, like some magic carpet.

I suppose there are some elements of post-traumatic stress syndrome (PTSD) in the cancer experience. Time may not heal all wounds, but it does seem – gradually, imperceptibly – to heal this one.

November 10, 2008 - Diagnosis Amnesia

Today, reading an e-mail newsletter, I come across an article about a very real psychological phenomenon I’ve experienced in the past. For lack of a better description, I’ll call it “diagnosis amnesia.” (“New Cancer Patients Retain Little Medical Information,” HealthDay News, October 22, 2008.)

It’s a common phenomenon, it seems: when a doctor has bad news to deliver to a patient, the patient may speak calmly and rationally, ask appropriate questions and nod with evident understanding. But then, the very same patient may walk out of the office and promptly forget a good deal of what the doctor has just said.

I know. That’s what I would have done on the day of my diagnosis, had I not had Claire along with me to remind me of the details, and had I not brought a notebook to scribble down all the medical terms we were hearing for the first time.

The article reports how “researchers... found that most people just diagnosed with cancer remembered less than half of what their doctor had told them.” I can remember concentrating very intently, that day, on what Dr. Lerner was saying to us. I can remember asking him to define terms, to explain the interpretation of test results – all the right questions, in other words. But then I can also remember, while surfing the medical-information web sites at home a few hours later, struggling to recall whether he’d just told me I have B- or T-cell lymphoma (which I now understand is a hugely important piece of information). Many of the details that had been so crystal-clear to me, there in the examining room, had slipped right out of my memory banks. I can remember opening up that pad of paper I’d brought with me, and reading the barely legible notes I’d taken – notes that were so fragmentary, they made little sense. And I’d only written them two or three hours before! It was like I had wool between my ears, or something.

I now recognize this as a common, ordinary symptom of psychological denial. The words, “You’ve got cancer,” are so momentous, so emotion-laden, that they have the capacity to force the brain to do a partial data-dump.

The conclusions of the researchers doesn’t surprise me one bit. “In one ear and out the other” with half of what the doctor has said doesn’t seem at all unusual.

Here’s more:

“Older people tended to ask fewer questions than younger ones, and surprisingly, those who asked the most questions had poorer recall. And people with a grimmer prognosis tended to remember less information than those with a brighter outlook, according to the study.”

Yup. That’s denial, all right.

So, what does this suggest, when it comes to trying to be a good patient? Bring someone with you, for one – a second set of ears always helps. Bring along a notebook, and don’t be afraid to write things down, right there in the doctor’s presence. Also, ask the doctor for booklets and brochures that explain your condition (fortunately, when it comes to most cancers, the doctors have plenty of these to give away, courtesy of the pharmaceutical companies).

And, one more thing: don’t worry if you have a hard time remembering this stuff. It’s just your system hunkering down and trying to protect you from the impact of dreadful news. Don’t be surprised if you have to reconstruct, later, what you heard – based on what your friend or family member recalls, and what you wrote down in your notebook.

Diagnosis amnesia is a powerful thing – and very real.

February 21, 2008 - Turns Out, You Can Nail Jello to a Wall

Today I listen to a teleconference sponsored by the Leukemia and Lymphoma Foundation. This is another in their series of helpful educational events, whereby a couple thousand people listen in on their telephones, through a conference-call link, to a talk by a cancer expert. Questions and answers follow. Today’s speaker is Armand Keating, M.D., Professor of Medicine at the University of Toronto. His topic is “Stem Cell Transplantation: Current Trends and Future Directions.”

Lest that topic sound dry and academic, let me remind you that, for people like me who may have to have a bag o’ stem cells dripped into our veins someday (or not), the subject has a certain amount of, shall we say, existential interest.

Anyway, one of the items most relevant to my situation came up during the Q&A time. Someone called in, saying he has transformed follicular lymphoma (like me), is in watch-and-wait mode (like me), and may have to have stem-cell transplant someday (yeah – you guessed it – like me). He was asking Dr. Keating to explain some of the factors the docs ought to take into account in deciding when it’s time to recommend a stem-cell transplant.

As you can imagine, the answer to that question is of more than passing interest to me.

Dr. Keating listed the following factors oncologists and their patients ought to consider:
- the patient’s age
- the nature of the follicular lymphoma
- the responsiveness of the disease to conventional treatments
- co-existing medical problems the patient may have
- whether the patient is prepared to accept the long-term ambiguity of a chronic condition.

That last phrase, “long-term ambiguity,” strikes a chord. That’s the story of my life right now, I think to myself. I’m living with a lazy cancer that could be life-threatening, but that’s not immediately dangerous. It’s out of remission, but “stable.” It hasn’t grown in 6 months, but it hasn’t shrunk, either. Should I act calm, or worried? Should I press for further treatment, or just sit back and see what happens next? Can I get on with my life, or should I stay in some sort of holding pattern indefinitely? Yeah, you could say “long-term ambiguity” describes it.

Decision-making, in such circumstances, is like trying to nail the proverbial jello to a wall.

It’s interesting, to me, that the doctors have even figured this capacity for hanging around, cooling our heels, into their treatment protocols. “Does this patient have the nerve to wait around, doing nothing, for what could be a very long time?”

Turns out you can nail jello to wall. It’s called living with an indolent lymphoma.

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?

September 24, 2007 - Hurry Up and Wait

Last night I watched the first part of Ken Burns’ new documentary series, The War – his take on World War 2. It was, as I’ve come to expect from Burns, gripping. One of the people interviewed, a woman from Alabama whose brother went to war, kept saying over and over how suddenly all their lives changed, the day they heard, over the crackling radio speaker, the news of Pearl Harbor. She seems a bit bewildered by the rapidity of the change, even to this day. Anyone with an eye to the political situation in Europe and East Asia in the late 1930s could have predicted that global conflagration was in the offing, but Americans were oddly insular. Our nation was in denial that the rise of the Nazi, Italian Fascist and Japanese war machines would ever affect us.

Lots of people are fond of describing patients’ experience of cancer in military terms. Turn to the obituaries any day of the week, and you’re likely to find the words “after a long battle with cancer” somewhere on that page. I’m not fond of such language, as I’ve said several times upstream – although I’ll admit that the shock of a cancer diagnosis, and the rapid changes it brings about, is not unlike receiving the news that formations of Zeroes have been sighted over Pearl Harbor.

Yet, it just doesn’t make sense, biologically speaking, to think of cancer as an outside invader. Our own bodies make the cancer. The cancer is us. If we’re going to use the military metaphor at all, I suppose we’ve got to describe it as a civil war – a protracted, brother-against-brother slugfest – rather than some pious crusade against a foreign enemy.

Even when we’re healthy, our bodies are perpetual killing fields. Cells come into being and die every hour, every minute, only to be replaced by other cells. That’s the natural order. It’s when a cell doesn’t die when it’s supposed to that the trouble begins. Maybe we ought to think of cancer cells as legions of the undead, marching dumbly onward.

I’m no fan of horror films, but I do know that one thing that makes for a good one is how well the director manages the viewers’ experience of waiting. There’s a delicious experience of foreboding that’s dear to the hearts of true horror fans. A good director knows that, once the swamp creature or zombie or pissed-off dinosaur finally shows up, that’s good for only a few minutes’ worth of celluloid. You could never sustain that level of terror throughout a full-length film. So, a great many minutes of horror movies are dedicated to spinning out that experience of waiting: knowing the evil adversary is coming, but not exactly when.

You can probably sense where I’m going with this. Someone has memorably described an ordinary soldier’s experience of war as long days of boredom punctuated by moments of absolute terror. Burns’ footage of Marines undergoing training and leaning on the rail of the troopships, then finding themselves in the fight of their lives in the pestilential jungles of Guadalcanal, is true to form.

I’ve noticed that members of the World War 2 generation are fond of the phrase, “Hurry up and wait.” It captures a reality they knew all too well: whether it was lining up for an army physical, queuing for a gas-ration card or playing endless rounds of penny-ante poker on a barracks footlocker.

In that respect, I suppose the military metaphor will serve for me as well. “Hurry up and wait”: I know a little better, now, what they mean.

March 2, 2007 - The Write Way To Heal

Today, I run across a news article about a Harvard medical researcher named Susan Bauer-Wu, who’s been working with cancer patients. She’s discovered the exercise of journaling to be therapeutic for the people she’s working with. She calls it “expressive writing” or “journal therapy.”

It’s simple, and about as low-tech as you can get: the only equipment needed is a pen and a notebook. From the article:

“The research suggests that by spending 30 minutes each day for four days to write out their innermost thoughts and feelings, patients can significantly boost mental and physical health.

And experts say nearly everyone who tries journal therapy stands to benefit.

‘Many people are so surprised at how it really works,’ said Bauer-Wu, director of the Cantor Center for Nursing and Patient Care Research at the Dana Farber Cancer Institute in Boston. ‘Even people who were reluctant to do it, who say, “I’m not a good writer, I can't write well, or I don't like to.” They'll go through the process and have that “A-ha” moment. They'll tell us – “Wow, I never realized this about myself, or about this disease – it just came out onto the paper.”’

Expressive writing therapy is just that: Patients are encouraged to express whatever is on their mind, letting their hopes and fears flow out in a natural, unrestrained way. It’s akin to keeping a journal, but more focused on the things that might be bothering you or triggering stress.”

I wonder if maybe that’s what I’ve been doing, in keeping this online journal. My approach is a bit more high-tech than pen and paper, but it’s not all that different. Bauer-Wu is right: I have found it therapeutic to keep a written record of the things I’ve been going through. I doubt if I would ever have begun it, though, were I writing simply for myself. The thought that others (family, friends, and various and sundry web-surfers) might find my ruminations helpful has kept me going, lo these many months.

Some experts are claiming, the article goes on to say, that journal-writing reduces stress and boosts the immune system. Well, I’ve got a cancer of the immune system. It’s not hard to understand why that would be helpful.

Interesting stuff. Now, if I could only get my medical insurance to reimburse me for the cost of my internet access....