April 6, 2013 — Newly Diagnosed? Tips from the Lymphoma Club

I found a great website today called the Lymphoma Club, which includes a helpful page containing tips for those newly diagnosed with lymphoma. This list is a bit long to absorb on one reading — 27 tips in all — but it’s well worth having a look at.

I’ve rearranged some of them into what I’d consider my Top 10. So, they’re renumbered, with the most important at the bottom. Where I thought a couple of the originals overlapped, I’ve combined them. I’ve added my own comments after each one.

10. Get organized.  Consider a binder. 
Or a series of computer files. Or whatever works for you. But you’ve got to have some kind of system for managing the tsunami of data you’re about to get hit with — some of it electronic, some of it paper (lab reports, prescription scripts, etc.), much of it stuff you’ve never heard of before. Start keeping an overall calendar of your treatment: you’ll be surprised how fast the weeks and months go by, and before you know it, you won’t be able to remember how many CT scans you’ve had, and when. Get in the habit of keeping a current medications list.  You’re going to be asked for that information more times than you could possibly imagine (mine lives in my smartphone).

9.  Find cancer support groups (ask your cancer center or search online).
For whatever reason — pride, idolatrous self-sufficiency, reluctance to deal with the weird reactions we ministers get from some people outside the church setting — I waited way too long to do this. The time to start going to a support group is BEFORE you think you need it. From the day of your diagnosis, you’re a cancer survivor. So, you can be sure there’s more than one group out there where you’ll be welcomed like you’re family, and (just like that old sitcom theme song) everybody knows your name.

8.  List ways family and friends can help you (chores, rides, cleaning, etc.).
This is a biggie. If you hear that little voice inside your head, saying “But I don’t want to impose on others,” speak sternly back to it, saying “GET BEHIND ME, SATAN!” (That’s a biblical allusion, for those unfamiliar with it.) You’ve got cancer. You need help. There’s absolutely no glory in trying to go it alone. Get used to it.

7.  Have a trusty advocate  join you during appointments to take notes and help  ask questions.
Remember that tsunami of information I mentioned above? This is one essential way of managing it. The necessity of bringing a friend or relative with you goes way beyond just sorting out a lot of medical jargon. You see, there’s a very common emotional reaction that’s especially strong at the time of diagnosis and just afterwards. You’ll be having a perfectly rational conversation with your doctor, and you’ll say to yourself, “No need to write that down, I’ll remember it,” then five minutes later as you’re walking out to the car, you’ll say, “Now did the doctor say my cancer is large-cell or small-cell, and which one is more treatable?” This has nothing to do with your intelligence, nor your memory power. It’s a species of denial. No matter how much you may imagine you’re cool, calm, collected and handling this pretty well, the reality is, you’ve just learned something that’s rocked your world, so your subconscious is saying, “That’s enough, I’m outta here!” You need that second set of ears, especially now.

6. Get educated. Know the details of your cancer diagnosis but don’t spent too much time online.
This is information-tsunami management, part two. To some extent, how you do this is an individual thing, but there are so many advantages to doing it — taking charge of the situation and becoming your own advocate — that this one makes my top-ten list, hands down. There’s a wealth of information out there, but the trick is separating the wheat from the chaff. Start with a good book on the details of your disease (I recommend Living With Lymphoma by Elizabeth M. Adler, a microbiologist and lymphoma survivor - Johns Hopkins, 2005). As for the internet, don’t be afraid to troll for useful information online — it’s not so much the amount of time you spend online, as where you go to find your information. Start with highly-reputable sites like the Leukemia and Lymphoma Society, or the National Cancer Institute, or the websites of world-renowned cancer hospitals. Then, move slowly outward from there (but always following links from these trusted sites). If you have any experience at all surfing the net, you already know it’s the Wild West out there when it comes to documentation and accuracy. It’s so very easy to wander down one of those electronic rabbit trails, and before you know it, you’re reading about how to cure lymphoma by wearing a crystal around your neck. Know, also, as you cancer-surf, that we all have a common defense mechanism that leads us always to jump to the worst-case scenario. All we need do, sometimes, is glance at a list of possible symptoms, and we’re quite sure we’ve got every one of ‘em. (The defense-mechanism angle is that our subconscious irrationally imagines we can protect ourselves from pain by inoculating ourselves with that same pain, even if there’s scant evidence for it; one of the reasons we have doctors is to protect us from such craziness).  Oh, and the other, similar tip about learning to read a lab report is absolutely correct. Learn what the most important of those little abbreviations on your CBC (complete blood count) mean, so when one of them shows up as elevated, you don’t flip out. Sometimes an elevated count is a big deal, but more often than not, it’s just normal variation.

5.  Feel free to seek a second opinion.
I agree with this as far as it goes, but I’d be much more emphatic. (Deploy megaphone.) GET A SECOND OPINION, STUPID! (Put away megaphone.) Sorry for the “stupid” moniker, but I had to get your attention. It doesn’t matter how much you like and trust the doctor you start with, cancer research is such a huge and complex universe that no single individual could ever be familiar with it all. If your oncologist is any good at all, he or she will have absolutely no problem with your seeking a second opinion, and will probably encourage it. On the other hand, if your oncologist bristles at the suggestion and starts bragging about his or her own medical credentials, then RUN, DON’T WALK to another doctor who better demonstrates the spiritual gift of humility. It’s exactly that sort of fall-in-love-with-yourself pride that leads doctors to overlook important details. Nowhere is this more crucial than in your all-important pathology report. And, do you know what? Your pathologist is by far your most important doctor you never meet. (The pathologist is the one who looks through the microscope at your biopsy slides and identifies your type of cancer cells, carefully counting how many of them there are, which determines the whole course of your treatment.) When you go from your local physician to an evaluation at a major cancer center (or, if you start with a major cancer center and go from one center to another) you get a new pathologist’s opinion along with it. You may well stick with your original doctor after getting the second opinion — or not, it’s up to you — but even if you stick with the original doc, he or she is going to be grateful that you presented the second opinion, which makes diagnosis and staging easier. (IF the doctor’s any good, that is — see “humility,” above.)

4. Pick an oncologist, one you feel comfortable with.  Preferably an expert in your type of cancer.
You DO have a choice. It’s your cancer, so you have a right to find a doctor you have confidence in. Whether it’s your first stop or a second-opinion consultation (see above), I HIGHLY, HIGHLY recommend checking out a National Cancer Institute (NCI) comprehensive cancer center. These are the cancer research hospitals that have access to the most up-to-date research findings and are able to point you to clinical trials, if that’s called for. If it’s a long journey between your home and a comprehensive cancer center, then consider working through a local oncologist who has strong ties with one of those centers (that’s what I do). And by the way — this is also real important — the mark of a good cancer hospital is not, I repeat, NOT how much money said hospital spends on TV advertising. The most prolific advertisers among cancer-treatment hospitals are certain for-profit institutions who garner impressive treatment results by cherry-picking the most treatable patients on the front end, discouraging those whose prognosis is less positive. (You won’t find these big advertisers on the NCI’s list, and there’s a reason for that.) This is ethically questionable behavior on the part of those who most stand to profit financially from that sort of approach. As with anything else that's driven by the profit motive, caveat emptor.

3. Continue to celebrate life in spite of cancer. You still have your identity. Don’t lose it. Participate in hobbies, live life and do the things you love to help keep you focused.
We’ve already established that a cancer diagnosis rocks your world. But that doesn’t mean you need to stand idly by and let it take over your world. Don’t let yourself become a cancer victim. Be a cancer SURVIVOR. There’s a huge difference, that has a lot to do with the degree to which you spit in cancer’s face and go on living your life, anyway.

2.  Find ways to relax and cope (yoga, guided imagery, music, hobbies, faith etc.). 
OK, I’ve elevated this to number 2, even though I have a major quibble with how it’s worded. Faith is not, I repeat, NOT in the same league as music, hobbies and the other items on that little list. There’s a common tendency in our non-sectarian society to label faith a “leisure activity” and lump it in with all sorts of more trivial  pursuits. A cancer diagnosis doesn’t just rock your world, it rocks your spiritual world. Whatever sort of faith you profess, this is the time when you most need to get serious about your faith-tradition and tap its resources. The benefit of doing that goes way beyond merely “relaxing and coping.” Your house of worship, if you have one — church, synagogue, meeting-house, temple, whatever — is the place to wrestle with the big questions, with help and advice from wise guides who have the life-experience and faith-experience to help you sort these issues out. (If you don’t have a house of worship, I advise you to find one.) Remember, houses of worship were in the healing business long before hospitals even existed. Nowadays, they perform their acts of healing alongside of, and in sync with, medical science, which means you get the best of both worlds. Your house of worship is also a great place to connect with friends who can, indeed, “help you” (see number 8, above).

And now, ladies and gentlemen, the number one tip for dealing with a new lymphoma diagnosis...

1. Take a deep breath and go easy on yourself.
Know that right now, today, is just about the worst time in the whole progression of your disease, whatever the ultimate outcome. Diagnosis is hard. (I’m not talking about it from the doctor’s standpoint, but from yours.) It’s hard because, in running the race for a deeper, more all-encompassing health, now is the time when you have to go from zero to a hundred in a matter of feet, not miles. So, treat yourself right, especially at this time. In the eyes of your Creator — not to mention those of your family and friends, and even yourself — you’re worth it. You really are.

Go ahead, now, if you’d like, and check out the other items on the original list. Most of them are pretty good, and very much worthy of mention. But these are my Top Ten, and I’m sticking with ‘em.

Finally, take a look at this short video, which comes from the same Lymphoma Club website. It’s guaranteed to lift your spirits and give you hope.

July 7, 2011 – Unbending Our Thoughts

Brian Stabler is a psychologist at the University of North Carolina, Chapel Hill, and a lymphoma survivor. In a helpful 2004 article, he speculates that a good deal of the trouble we go through in dealing with cancer is a result of unrealistic or “bent” thinking. The technical psychological term is “cognitive distortions.”

What are some of these bent thoughts? Stabler explains:

“For instance, when asked, many cancer patients report that they believe cancer is a foreign invader substance, such as a virus. This underlies the common misconception that you can actually ‘catch’ cancer from someone else. Obviously, this distorted belief could work against optimal outcomes, because it encourages the patient to rely on others – as if medicine, and a doctor or nurse is all that is needed to make things better. Not so: the patient is the most important part of the equation, and must learn to deal positively with cancer.”

Stabler encourages a technique of dealing with destructive thinking that requires immediately identifying the presenting thought that caused the negative emotional state, then “sweeping” it so it can do no more harm.

He suggests a learning exercise in which we keep a piece of paper close at hand, divided into three columns. The first is labeled “SITUATION,” the second, “REACTION” and the third, “THOUGHT.” When you find yourself reacting negatively, he explains, make a note of the situation that precipitated it, then try to capture the thought you were thinking just before you became aware of the depressive or anxious or angry emotion that ensued.

Stabler suggests several common categories of distorted thinking:

1. Black and white thinking – this is the all-or-nothing style where everything is simple and concrete, and there are no shades of grey.

2. Catastrophizing – where an individual interprets even the smallest problem as a potential disaster and reacts accordingly.

3. Fortune telling – the tendency to believe that we know what the future holds, and it generally is not pleasant.

4. Emotional reasoning – the belief that the feelings you experience represent reality, as in, "I feel bad all the time, so this must mean that things in my life are pretty bad."

If just one or two of these thinking styles is present, a cancer patient could have a poorer life quality, increased stress, and perhaps even negative changes in the course of [the] illness. Research has shown that if patients learn to journal their thoughts, and actively begin to challenge and adjust their ‘hot thoughts’ and distortions, they can anticipate improvements in their quality of life. I've come to firmly believe that keeping psychologically fit is every bit as important as keeping physically fit.”

Because cancer is generally not caused by some foreign-invader virus or bacterium, but is in fact an erroneous response of our own genes, our patterns of thought may well have a great deal of influence on how successfully we manage to live with this disease. We can’t think ourselves well by utilizing our minds alone, but our thought processes do have something significant to do with our well-being. It’s all part of the healing process. Every little bit helps.

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 8, 2009 - Turned Toward Blessing

Today I come across a blog entry from last April by Dana Jennings, a New York Times reporter being treated for aggressive prostate cancer. Dana is Jewish, and writes eloquently on the intersection of faith and cancer. Here’s an excerpt:

“One of our cultural verities about serious illness is that it often challenges our faith. But for me, if anything, having cancer has only deepened it, heightened it.

I have spent the past year in the dark ark of cancer, and there is no question that I have become a new man. I’ve been granted a wisdom that only arrives at the rugged confluence of middle age and mortality. And I know, soul deep, that I have not been cut open, radiated, and tried physically and spiritually so that I can merely survive, become a cancer wraith. Since my diagnosis – after shaking off the initial shock – I have kept asking myself, in the context of my belief: What can this cancer teach me?

The most surprising thing I’ve learned is that cancer can be turned toward blessing. Through the simple fact of me telling my cancer stories on this blog, many of you readers, in turn, have told your own stories. And that mutual sharing of our tales has changed my life for the good. Rabbi Abraham Joshua Heschel said, 'Life is not meaningful, unless it is serving an end beyond itself, unless it is of value to someone else.'”

I like Dana's concept of cancer being “turned toward blessing.” I won’t ever be able to consider cancer a good thing, but our miraculous God can wring blessings out of even the darkest episodes of life.

In a remarkable way we, too, can be turned toward blessing. When we are able at last to make the move from cursing our fate to blessing others by our actions, we know the seeds of healing are taking root in our lives.

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.

August 22, 2009 - Laughter Yoga

This little video is endearing – and not just because it features the always-amusing John Cleese as narrator. I’ve heard of India’s “laughter yoga,” but have never actually seen it before, in action.

I figure this stuff has got to be therapeutic – but, if nothing else, it looks like great fun:



I’m especially intrigued by the observation that it doesn’t seem to matter whether the laughter is forced or natural: the therapeutic benefit is the same.

Of course, as the doctor points out in the video, even if participants are forcing their laughter at first, after a few moments of looking at all those goofy faces, only a rock could keep from laughing in response.

Maybe laughter really is the best medicine.

July 31, 2009 - Praying in the Tube

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

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

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

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

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

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

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

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

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

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

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

The point is, to catch that larger vision.

Prayer changes things. Prayer changes us.

April 20, 2009 - Known By Our Wounds

Sunday’s sermon afforded me an opportunity to mention cancer survivors’ issues. I was preaching on the post-resurrection appearance of Jesus in which his disciple, Thomas, needs to see and touch Jesus’ wounds in order to be convinced of the truth of the resurrection.

As I pondered anew the meaning of this familiar scripture text, it struck me how noteworthy it is that the disciples know Jesus by his wounds. It’s very true-to-life, psychologically speaking. Often, we do know one another by our wounds, by the adversaries we’ve bested (or are still struggling against).

From the sermon:

“Sometimes the scars are visible, peeking out from the surface of our skin. More commonly, our wounds are hidden: either beneath our clothing or concealed deep in the recesses of our soul - rarely talked about, seldom acknowledged. Those friends and family who know us well, know of their existence. They, too, know us by our wounds.

When neighbors of ours go through some grueling medical ordeal and survive it, we come to know them, too, by their wounds. See the neighbor across the street climbing into his car? You can't help but recall the triple coronary bypass he had a couple years ago. Greet your co-worker in the office one morning, the one whose speech is just a little fuzzy - the last reminder of the stroke that first took all her speech away, then slowly gave it back, word by word, through hard work with the therapists. Every time she opens her mouth, you marvel at how far she's come.

I suspect that, as many of you look at me, you can't help but recall the word, "lymphoma." Once you become a survivor of something like that, it becomes a part of who you are, for better or for worse. Our wounds, in life, have a way of molding and shaping us.”

As part of the sermon, I shared with the congregation a quote from surgeon and author Richard Selzer. I’ve long been an admirer of his writing. This is from an essay called, simply, “Skin.” It’s a doctor’s appreciation of this largest organ in our bodies, that covers and protects us, even as it serves as our interface with the outside world:

"I sing of skin, layered fine as baklava, whose colors shame the dawn, at once the scabbard upon which is writ our only signature, and the instrument by which we are thrilled, protected and kept constant in our natural place.... Gaze upon the skin as I have, through a microscope brightly, and tremble at the wisdom of God, for here is a magic tissue to suit all seasons. Two layers compose the skin - the superficial epidermis and, deeper, the dermis. Between is a plane of pure energy where the life-force is in full gallop. Identical cells spring full-grown here.... No sooner are these cells formed than they move toward the surface, whether drawn to the open air by some protoplasmic hunger or pushed outward by the birth of newer cells behind.... Here they lie, having lost all semblance of a living cellularity, until they are shed from the body in a continual dismal rain. Thus into the valley of death this number marches in well-stepped soldiery, gallant, summoned to a sacrifice beyond its ken. But let the skin be cut or burned, and the brigade breaks into a charge, fanning out laterally across the wound, racing to seal off the defect. The margins are shored up; healing earthworks are raised, and guerrilla squads of invading bacteria are isolated and mopped up." [Richard Selzer, Mortal Lessons (Simon & Schuster, 1976 ), pp. 105-106.]

We can look at scars, it seems to me, in two ways: as a reminder of something bad that’s happened to us, or as a reminder of a powerful process of healing that continues to be active in our bodies.

The nature of my cancer treatment has been such that I’ve never needed surgery. Consequently, the only cancer-related scar I carry on my body is the small one, near my collarbone, that marks the place where my chemo port was implanted (and where it remains to this day, in case it’s ever needed).

The scars, the wounds, I bear as a result of my treatment are of a less-visible nature. I’m more vulnerable now, and also more aware of my mortality. I operate less out of a sense of spiritual entitlement: no longer assuming the unconscious, childlike belief that if I just do the right thing, God will reward me. The universe doesn’t seem to be as safe a place as I once assumed it was: I’m all too aware that God has inserted a frightening degree of randomness into the creation.

Still and all, it’s not a bad place to be. Cancer may have beaten me up a little, but it hasn’t kept me down. I’m learning to move on from here, scars and all.

July 13, 2008 - Mind-Body Medicine Stories

Late this afternoon, Claire and I are sitting on the screened-in porch of our little house in the woods. It’s been raining softly most of the day. We have neither energy nor desire to do anything other than just sit here. After all the frenetic days of getting ready for the trip, a long day of driving and another day of settling in, we’ve finally hit rock bottom. We’ve arrived. We’re officially... on vacation.

The first book I picked up to read, out of the pile I brought with me, was one I’ve been hoping to get to for some time: The Cure Within: A History of Mind-Body Medicine, by Anne Harrington (Norton, 2008). I found it so lively and fascinating, I plowed right through it.

Harrington heads the History of Science Department at Harvard. In this wide-ranging survey, she traces the history of a very old idea that’s continued to bob to the surface, despite periodic attempts by some medical scientists to push it back down: the idea that our state of mind influences our bodily health.

The movement called “mind-body medicine” – if it can indeed be called a movement – is fairly amorphous. It contains within it everything from serious scientific studies to absolute quackery. Rather than trying to portray it as a coherent system, Harrington wisely chooses to tell stories. She identifies six signature “narratives” that come up again and again, across the generations:

1. The Power of Suggestion – Beginning with roots in religious exorcism rituals and continuing through the rise of mesmerism (later known as hypnotism) in the 18th and 19th centuries, this narrative culminates in the more recent understanding of placebos as something that may have real therapeutic value. Even skeptical, post-modern folk continue to respond to what has been called “the power of suggestion,” especially when mediated by a doctor or other authority-figure we trust.

2. The Body that Speaks – Beginning with the work of Freud, Harrington traces the efforts of various pioneers of psychology to listen to what their patients’ bodies are saying: not just the quantifiable messages of blood counts and body temperature, but also more subjective messages related to state of mind. From primitive Freudian notions of “hysteria” in women, through studies of “shell shock” (later, post-traumatic stress syndrome) in soldiers, through now-discarded truisms like stress as the cause of stomach ulcers, this narrative has evolved through many incarnations. The saga continues to be told by modern practitioners like cancer-treatment guru Bernie Siegel, who – rightly or wrongly – traces the roots of many cancers to emotional unease.

3. The Power of Positive Thinking – From “faith-healing” miracles at Lourdes, through Mary Baker Eddy’s Christian Science, through Norman Vincent Peale’s “power of positive thinking,” through Norman Cousins’ laughter therapy of the 1970s, to AIDS activists’ embrace of the self-healing concept in the 1990s, Harrington describes the persistent idea that we can think our way to better health.

4. Broken by Modern Life – Before the mid-20th century, the concept of “stress” was nothing more than an engineering term. But then, beginning with the pioneering work of psychologist Walter B. Cannon at Harvard (who identified the “fight or flight” response), and continuing through Hans Selye, who popularized the idea of stress as the signature problem of the modern era, stress is now on everybody’s mind. We’ve heard of the “Type A” personality that’s said to be at greater risk of heart attacks, and we’ve heard how stress-management techniques have helped AIDS patients maintain a healthy immune system. Can anyone doubt that psychological stress is real, and has an impact on physical health?

5. Healing Ties – “If two lie together, they keep warm,” observes the book of Ecclesiastes, “but how can one keep warm alone?” To that ancient wisdom, Harrington might add, “how can one stay healthy alone?” From stories of close-knit, ethnic communities whose members are inexplicably spared the worst of certain diseases, to tales of isolated, sickly children in orphanages who were rarely picked up and cuddled, to support groups that keep cancer survivors healthy, there’s ample evidence that social relationships play a big role in our health.

6. Eastward Journeys – The more disenchanted we in the industrialized West come to feel about our mechanistic, often soulless society, the more some of us are turning eastward, borrowing insights from ancient spiritual practices of India, China and Tibet. Harrington tells the tale of Harvard physician Herbert Benson’s interest in Transcendental Meditation – which he later secularized as “the relaxation response” – and of the east-west migration of practices such as acupuncture and qigong into complementary treatments for cancer.

Reflecting on Harrington’s rich depiction of mind-body medicine, I have to say there’s something troubling about it. If the mind can influence the body in the direction of either health or illness, then what does that say about those who become sick? Are we who have cancer somehow deficient in our thinking? Should we, the victims, be blamed?

Harrington is alert to this problem, mentioning it on several occasions throughout her book. One of the most memorable is connected with her quotation of a “darkly comic” 1940 poem of W.H. Auden, called “Miss Gee.” It’s about an elderly spinster who gets cancer, which her doctor attributes to her tightly-buttoned emotional life.

Here’s an excerpt:







“She bicycled down to the doctor,
And rang the surgery bell;
‘O doctor, I’ve a pain inside me,
And I don’t feel very well.’

Doctor Thomas looked her over,
And then he looked some more;
Walked over to his wash-basin,
Said, ‘Why didn’t you come before?’

Doctor Thomas sat over his dinner,
Though his wife was waiting to ring,
Rolling his bread into pellets:
Said, “Cancer’s a funny thing.

‘Nobody knows what the cause is,
Though some pretend they do;
It’s like some hidden assassin
Waiting to strike at you.

‘Childless women get it,
And men when they retire;
It’s as if there had to be some outlet
For their foiled creative fire.’” (p. 90)

(The “rolling his bread into pellets” is, I expect, a reference to the fact that some early placebo pills were made of bread.)

Ought cancer survivors to be blamed, somehow, for some “foiled creative fire” that has rendered us susceptible to disease? Harrington urges caution. She’s well aware that the insights of mind-body medicine can be a double-edged sword. For that reason, she concludes her book by urging that these healing narratives be used with discretion. Such stories must be used descriptively, not prescriptively. They help us “bridge the lacunae in our thinking.” Even though the use of such narratives may seem, to some, unscientific, medicine still ought “to embrace them as part of its map and part of its territory alike” (p. 255).

The Cure Within is a satisfying read. Check it out.

February 13, 2008 - Hope Does Not Disappoint

“What price do you put on hope? Is $3,000 a week too much?” So begins a health column from the February 4th Newsweek. Jerry Adler, the columnist, is telling the story of a couple named Said and Mary Nedlouf. She had advanced breast cancer that her oncologist was calling untreatable. Her husband didn’t want her to lose hope. So, they agreed she would go to another doctor and pursue costly homeopathic treatments that weren’t covered by their insurance. The bottom line? $41,000, which the Nedloufs paid out of pocket.

The treatments did Mary little good. She died anyway, pretty much when the traditional-medicine doctors had predicted she would. As for Said, when he recalls the homeopathic doctor’s questionable advice, he’s left feeling angry. He feels the homeopath gave his wife false hope, encouraging her to hold out for a cure – when she would probably have been better advised to “get her affairs in order,” as they say.

This doctor, says the grieving husband, “robbed me of precious time to console her, to come to closure, to prepare for her departure.”

I place pretty near zero confidence in homeopathic treatments, myself. Everything I’ve read about this school of alternative medicine – a pharmacology based on an odd, 19th-century premise that repeatedly diluting medicinal substances with water makes them more (rather than less) effective – sounds like complete hokum to me. Even if homeopathic medicines did have some real medical value at full strength (a premise that’s very much open to question), then by what stretch of the imagination does diluting them make them more effective?

Yes, I know some people claim to have derived benefits from homeopathic treatment – and I would never presume to tell fellow patients not to seek out an otherwise-harmless treatment they think could possibly help. I'm sure, also, that many homeopathic practitioners are fine people, and practice listening skills in ways not so many traditional physicians are willing or able to do. Yet, I also know the placebo effect is a powerful thing. I see little evidence that homeopathy is more effective than a sugar pill, if that sugar pill is prescribed by a doctor the patient trusts.

The Newsweek article raises, for me, the question of hope. What is it? Where do we find it? How do we maintain it, over time? When – if ever – should we stop hoping?

“Hope,” says Paul in Romans 5:5, “does not disappoint us, because God’s love has been poured into our hearts through the Holy Spirit that has been given to us.” This is an image of abundance, abundance in the midst of utter desolation.

Paul can speak of such things because he has already seen, in his own life, the love of God poured out in such abundance that it overflows. Paul doesn’t speak of suffering as one who has never known it. Rather, he speaks as one with scars on his soul – one who has known not only persecutions but also what it feels like to have been a persecutor himself, and to have repented of that evil.

“I know what it is,” he writes soberly to the Philippians, “to have little, and I know what it is to have plenty. In any and all circumstances I have learned the secret of being well-fed and of going hungry, of having plenty and of being in need.” (Philippians 4:12).

Then, and only then, does Paul goes on to add these well-loved words: “I can do all things through him who strengthens me” (v. 13). Paul can make that audacious claim because he has had the experience of casting his body off a spiritual cliff, and finding God’s arms were there to catch him.

In what, indeed, does our hope consist, as cancer patients? Is it in the unique pharmacology of the next new treatment to come down the pike? Or, is hope something else altogether, something we discover deep within us and bring to our work of self-healing?

There’s also a communal aspect to hope. In the words of Chinese author Lin Yutang, “Hope is like a road in the country. There was never a road, but when many people walk on it, the road comes into existence.”

I find something deeply profound, and remarkably true-to-life, about that humble image. Yes, of course it is the imprints of many feet that make a rustic footpath. It’s easy to see the footpath when others have been that way before. Yet, who is it who first grasps the vision that there ought be a pathway here, and begins the work of walking it?

Poet Emily Dickinson calls hope:

“...the thing with feathers
That perches in the soul,
And sings the tune without the words,
And never stops at all...

I’ve heard it in the chillest land,
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.”

No: hope does not disappoint us – we, who live with cancer. True hope, hope that’s founded on something stronger than mere pharmaceutical formulas, can never disappoint.

December 1, 2007 - Secrets of the Pyramid

Today I come across a helpful and attractive website, belonging to a group called the Cancer Recovery Foundation of America. It’s got a lot of useful information for cancer survivors.

The thing that’s most intriguing to me is a rather simple teaching tool called the Cancer Recovery Pyramid. It’s modeled, I’m sure, after the nutritional pyramid used by the Federal government.

I like several things about this model. First, spirituality is foundational. It’s the broad base on which everything else rests.

Second, the next level pairs attitude and support, which are indispensable both to recovery and to each other. Keeping a positive attitude is central to cancer recovery, but it’s not everything. Those who are successful at living with cancer, in my experience, are those who also reach out and build connections with others. They know the importance of both nurturing their existing intimate relationships and establishing new ones with fellow cancer survivors.

Third, the pyramid emphasizes nutrition and exercise. If there’s any part of the pyramid that’s my personal weak point, it’s this level. I do know, though, that when I eat right and get to the gym regularly, I feel better.

Finally, medical treatment is at the top of the pyramid. This is where it should be. There are some who emphasize alternative therapies to the point where they’re neglecting, or even contravening, medical advice. These are the people who are inclined, by nature, to jump on the bandwagon of each new bit of wacky, word-of-mouth advice that comes their way. They are constantly getting their hopes up and seeing them dashed just as quickly. It’s better to think not of alternative therapies, but of complementary therapies – those pursued in coordination with the best medical advice.

At the same time, it’s worth noting that the area occupied by medical treatment is the smallest of all. As vital as medicine is (symbolized by its position at the top of the pyramid), it’s a paltry response indeed if the other areas are not also in place, forming a solid foundation. Patients who walk into the doctor’s office spiritually grounded, supported by healthy self-esteem and by their families and communities, and taking good care of their bodies are best-equipped to live with cancer.

These are some things I see in the Cancer Recovery Pyramid. Whether all these observations were intended by the pyramid’s creators to be there, I don’t know. But that’s what it says to me.

Now, if I could only do better with that diet and exercise thing...

July 24, 2007 - Providence

Yesterday, I was supposed to have a PET/CT fusion scan and an accompany- ing CT scan. That didn’t happen, because the PET/CT fusion scanner broke down. Atlantic Medical Imaging called yesterday morning to tell me not to bother to come in. Of course, I’d already drunk half a bottle of the chalky contrast fluid the night before, as instructed.

Oh, well. I’ll just have to repeat the procedure on Wednesday night, for my rescheduled Thursday scan. Through a fortunate error, they gave me an extra bottle of the lovely stuff, so at least I don’t have to make an extra trip to their facility to pick up another.

I wonder what medical-imaging companies do when their high-tech machinery breaks down? Call the repair service, I guess. Does the dispatcher tell them, “Make sure somebody’s there tomorrow, sometime between 8 am and 4 pm?” I have visions of some guy showing up in a panel truck, wearing a toolbelt over his greasy, low-riding jeans, saying, “OK, show me where ya got dis here PET scanner...”

Today, I’ve been reading an excellent article, “Security Check,” from the July 10 issue of The Christian Century. It was recommended to me by Carol, a friend and ministry colleague. It’s an excerpt from an upcoming book by Scott Bader-Saye of the Unversity of Scranton, Following Jesus in a Culture of Fear (Brazos Press).

Bader-Saye tells the story of an acquaintance of his, a cancer patient named Steve, who received a letter from a well-meaning, but theologically clueless friend. This woman knew – she just knew – God would heal Steve, if he would only believe.

The letter didn’t bring a whole lot of comfort, because Steve was astute enough to realize the implication: if he did not receive a gift of miraculous healing, it would be his fault, because he did not have enough faith.

Steve was offended enough by the letter to venture a reply, even though – because of his weakened condition – he had to call on his brother to write down his words:

“I share your faith in the almighty power of God to heal and sustain us. There may be times, though, when God's greatest miracle is not the miracle of physical healing, but the miracle of giving us strength in the face of suffering. Paul wrote in 2 Corinthians 12 that he prayed God would remove a thorn in the flesh, but God answered simply, "My grace is sufficient for thee: for my strength is made perfect in weakness . . . for when I am weak, then am I strong." Also, Jesus prayed in the garden that he might not suffer, but it was God's will, and he faced that suffering with a perfect faith.

As I read the Bible, God's promise is to remove all our suffering in the next life, though not necessarily in this one. In this world, we will sometimes weep, suffer and die. But in the New Jerusalem, ‘God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain, for the former things are passed away’ (Revelation 2:14).

I sincerely hope that if my cancer continues to grow, no one will see it as a failure of my faith in God, but that perhaps people can see me as faithful even if I die while I am still young. I do not claim to understand God's will, but I do know that I am in God's hands, whether in life or in death.”

Commenting on the woman’s letter, Bader-Saye speaks of the theological doctrine of providence, which many people take to be synonymous with a promise of protection. It’s not:

“She mistook God's promise to provide for a guarantee to protect, and once she had done that, she could only lay the blame for Steve's cancer at his own feet. Once she had ruled out the possibility that the cancer could result from chance or misfortune (and her understanding of providence left no room for contingency), she assumed that someone had to be blamed for the illness. This perverse theological form of adding insult to injury results from misunderstanding the connection between providence and security. Providence does not guarantee protection; rather, it assures us of God's provision (making a way for us to go on) and redemption (restoring what is lost along the way).”

I like that. I’ve never taken providence to mean protection, myself, but Bader-Saye reminds me anew that God promises to provision us for the journey, however difficult it may be. As the most beloved of Psalms reassures us:

“Even though I walk through the darkest valley,
I fear no evil;
for you are with me;
your rod and your staff –
they comfort me.” (Psalm 23:4)

God doesn’t spare us the arduous journey – but God does hand us a rucksack, filled with provisions for it (if only we are willing to accept the gift). And, at journey’s end, we are welcomed with a feast that redeems the suffering:

“You prepare a table before me
in the presence of my enemies;
you anoint my head with oil;
my cup overflows.” (23:5)

The only thing my cup’s overflowing with, these days, is radioactive contrast fluid, but no matter. There will be other cups, and more meaningful libations.

June 27, 2007 - A Miracle?

As various people have learned of my experience in the operating room the other day, some have wondered whether it could be a miracle. Based on the very limited facts we have at the moment, it does seem like it could fit the profile of a modern miracle-story. That profile goes something like this:

Patient has cancer. Modern medicine prepares its usual array of therapies to treat the cancer. Friends of the patient pray for healing. Patient goes in to receive medical treatment, but the doctors are baffled: there is no longer any sign of cancer in the patient's body! Patient goes home praising God. Doctors are left scratching their heads in wonderment.

We've all heard such stories before. Even with its impressive arsenal of high-tech tests and scans, medical science is still unable to explain certain things that happen. When doctors make predictions – based on empirical evidence and past experience – about how a particular patient's cancer is likely to progress, they do tend to be right in a large majority of cases. Yet, there is a significant minority in which their predictions are a bit off. Among that small number of cases, there is a tiny – no, minuscule – number in which they're completely wrong: in which the cancer that had been predicted to spread not only goes into remission, but seems to completely disappear.

Is this the hand of God at work? Or, is it just something that simply happens on occasion, within the normally-accepted range of statistical error? A person's faith perspective plays a big role in how he or she answers such questions.

As for me and my faith perspective, I don't spend a lot of time sitting around, waiting for that kind of spectacular intervention to take place. Yes, I do believe in miracles, but I also do believe they're rare as can be. I'm far more likely to spend time thinking about a different sort of miracle, one far more widely-distributed in our world. C.S. Lewis has described it thus: "Miracles are a retelling in small letters of the very same story which is written across the whole world in letters too large for some of us to see."

Or, as the Welsh poet Huw Menai put it, in a little poem, "Paradox":

If the good God were suddenly
To make a solitary Blind to see
We would stand wondering all
And call it a miracle;
But that He gives with lavish hand
Sight to a million souls we stand
And say, with little awe,
He but fulfills a natural law!

Yes, we people of faith ought to cultivate an eye for the miraculous. Yet, we do well to look for miracles within the natural order, not outside of it.

I have cancer. Chances are, as a result, my life could end up being shorter than most. Am I happy about that? No. There are times when I'm still filled with anger and disbelief, that such a thing has happened to me. Yet, is it really such a theological scandal that one person among billions – a person who’s going to die eventually, anyway – could end up having a decade or two shaved off his lifespan? Do I consider this to be such a violation of cosmic justice that I look to God to spectacularly intervene, supernaturally removing every mutated lymphocyte from my body, once and for all?

No. I have no reason to expect such divine intervention. Why should I be more deserving of such a blessing than anyone else?

There are a few who seem to think I do deserve such a thing, because I'm a minister (much as, in the old days, the shoemaker's kids weren't expected to go barefoot). When I was talking with Dr. De La Luz on the phone last week, about anesthesia issues related to my sleep apnea, he picked up on my fear, and tried to comfort me. He said, cheerily, "I know the guy upstairs is looking out for YOU" – with a big emphasis on the "you," as though to say, "God's looking out for you, of all people." In the same-day surgery staging area the other day, one of the nurses – upon learning that I'm a minister – said something similar, about God surely being on my side. I always receive such comments graciously, in the spirit of caring and support with which they're meant – but, I don't believe them for a minute. (I've never put a "Clergy" sticker on the rear bumper of my car, either, hoping for preferential treatment from the police.)

Bruce Almighty is a rather silly movie – a Jim Carrey vehicle, so you know it's silly – which yet wrestles with some serious theological issues. The background is that God, played by Morgan Freeman, gets fed up with the laments of Bruce, played by Jim Carrey, about how badly his life is going. God decides to hand the reins of the universe over to Bruce for a little while, so he can glimpse the big picture. In one scene, Bruce gets to sit at a computer that's handling God's daily inbox of prayer requests.

"You've got prayers," says a cheery little message. Bruce decides to see just how many prayers are in the ol' inbox. "You've got 3,152,036 unread prayers," says the computer. Bruce tries to answer one or two, but realizes it's an impossible task. He selects "Answer All," then the word "Yes."

The scene then shifts to someone who had prayed to win a big lottery jackpot, and whose prayer has been answered – but then, so have the prayers of hundreds of thousands of other people. The payout is tiny. All those winners are mightily disappointed.

Bruce then seeks out God – who, in God's idea of a vacation, is taking simple pleasure in a janitor's daily tasks, mopping the floors of a vacant office building. "What happened?" asks Bruce. "I gave everyone what they wanted."

God sets the mop aside. "Since when does anyone have a clue about what they want?"

God then proceeds to show Bruce the implications of some of the prayer requests he's just answered in the affirmative. See that kid who's been bullied at school? God asks. You just gave him huge muscles. He'll soon become a bully himself. He would have become one of the world's great poets, giving voice to suffering and vulnerability, but now he's going to become a professional wrestler.

The bottom line is, we just don't know. When we shift our reasoning faculties into high gear and try to puzzle out huge cosmic questions like why one person died in the World Trade Center but why the person at an adjacent desk - who had a dentist’s appointment that morning – lived, we simply can’t account for it. Was one really more divinely favored than the other?

I'm trying to look elsewhere for miracles, these days, than in my own lymphocytes. Like the other day, for instance, when there was a torrential summer rainstorm with the sun still shining, and we all rushed out to the front porch to look for a rainbow, and sure enough, there one was. Or, when I walked out of the church after a meeting last night, and was gifted with the vision of a luminous, nearly full moon, hung in an iridescent purple sky. (I remember thinking that, if it weren't for the cancer, I probably wouldn't have slowed down to give that moon a second thought.) Or, when I marvel that there are people who love me, despite my faults.

Miracles? They're everywhere.

May 21, 2007 - Healing or Wellness?

This morning I drive over to visit the newly-opened local affiliate of The Wellness Community – a national organization providing “professional programs of emotional support, education, and hope” to people with cancer. It’s in Eatontown, about 25 minutes north of here. They have a great location, just off the Garden State Parkway. The paint on the meeting rooms is still fresh, and not all the furniture has yet arrived, but it’s clear the staff and board members have great plans for the place. Classes, support groups, yoga, qigong, a resource library – all these will be offered to cancer survivors, at no charge.

I’ve gone up for one of their scheduled Newcomers Orientations, but today I’m the only one there. So, my orientation takes the form of a one-on-one chat with Jan, the program director. It turns out Jan knows my wife, Claire. She’s a clinical social worker who served on the same hospice team with Claire about 10 years ago.

In the course of our conversation, the word “healing” comes up. Jan explains it’s the philosophy of The Wellness Community to avoid that word as much as possible, favoring “wellness” instead. The reason is that many people associate “healing” with cure – and, of course, not all cancers can be cured. Would it not give cancer survivors false hope to speak of healing, when many of them will eventually die of the disease, anyway? Wellness is a better word – or, so declared the Community’s late founder, Dr. Harold Benjamin, in his book, From Victim to Victor. I have the sense that Jan may not be 100% on board with this impoverished understanding of healing, but she gamely presents the party line.

It seems to me that, in the 25 years or so since the first Wellness Community was founded, the meaning of the word “healing” has evolved and expanded. Now, it describes so much more than the mere cessation of physical disease. I know, from conversations with Claire about hospice ministry, that hospice team members consider the word to have multiple levels of meaning. Even death, in certain circumstances, can be considered a healing experience.

Leo Tolstoy – the Russian novelist and mystic – once observed that our true life is not the ordinary, material life we see here on this earth. Rather, it is the invisible, inner life of the spirit. The relation of our physical life to our spiritual life is like the relation between the elaborate scaffolding that construction workers put up, and the building itself.

The scaffolding displays the general shape of the true building. It’s easy for uninformed passersby to mistake this aggregation of steel pipe and wooden planks for the real thing – but it’s not. The scaffolding is important, and very necessary to the work of construction, but it’s only temporary. The scaffolding masks the true structure, which is slowly taking shape within, under the tarpaulins. One day the scaffolding will come down, and the true structure will be revealed.

That inner place is where healing happens. There’s no need to shy away from that word – even in cases when it’s clear, to the anxious circle of family and friends gathered around a hospital bed, that death is near.

"For we know that if the earthly tent we live in is destroyed, we have a building from God, a house not made with hands, eternal in the heavens. For in this tent we groan, longing to be clothed with our heavenly dwelling — if indeed, when we have taken it off we will not be found naked. For while we are still in this tent, we groan under our burden, because we wish not to be unclothed but to be further clothed, so that what is mortal may be swallowed up by life." (2 Corinthians 5:1-4)

Wellness is a great word: but healing is better.

January 17, 2007 - Faith Heals...Online, or Anywhere Else

From time to time, I run across articles that speak of the impact of religious faith on healing. While I’ve yet to see a scientific study on this slippery subject that’s completely convincing, there’s a whole lot of circumstantial evidence that suggests that religious faith is good for our health.

Today, I come upon another one of these: an online news bulletin from iVillage Total Health, a medical information service, that summarizes a recent University of Wisconsin study. The results from this study were published in the February issue of the journal, Psycho-Oncology.

What these researchers did was to examine a group of breast-cancer patients who have been in touch with each other through online support groups. They first gave the women questionnaires, designed to assess their emotional state – both at the beginning of the study and at its conclusion. Then, they analyzed the verbal, e-mail responses of these women over a certain period of time, looking for certain religious words: “holy,” “pray,” “God,” “worship” and the like.

The researchers discovered that “women who used a higher percentage of religious words had lower levels of negative emotions. They demonstrated higher levels of self-efficacy and functional well-being, even after controlling for the pre-program religious belief levels. The participants appeared to use a number of different ways to cope with their illness. These included placing trust in God and finding blessings in their lives. Patients also expressed a belief in the afterlife resulting in a lower fear of death.”


So, it seems faith and healing are intimately related. Just about any pastor – one who’s visited a lot of hospital patients, anyway – could have told the researchers that.

They just had to find out for themselves, that’s all.