May 18, 2008 - The Imperfect Is Our Paradise

Some time ago, I saved this quotation from Philip Simmons’ book, Learning to Fall: The Blessings of an Imperfect Life. Simmons suffers from ALS (Lou Gehrig's disease):

“We have all heard poems, songs, and prayers that exhort us to see God in a blade of grass, a drop of dew, a child’s eyes, or the petals of a flower. Now when I hear such things I say that’s too easy. Our greater challenge is to see God not only in the eyes of the suffering child but in the suffering itself. To thank God for the sunset pink clouds over Red Hill – but also for the mosquitoes I must fan from my face while watching the clouds. To thank God for broken bones and broken hearts, for everything that opens us to the mystery of our humanness. The challenge is to stand at the sink with your hands in the dishwater, fuming over a quarrel with your spouse, children at your back clamoring for attention, the radio blaring the bad news from Bosnia, and to say ‘God is here, now, in this room, here in this dishwater, in this dirty spoon.’ Don’t talk to me about flowers and sunshine and waterfalls: this is the ground, here, now, in all that is ordinary and imperfect, this is the ground in which life sows the seeds of our fulfillment.

The imperfect is our paradise.”

I can’t say my suffering begins to approach that of an ALS patient like Philip Simmons. In fact, whatever suffering I experienced during my chemotherapy is becoming more and more of a distant memory. I’m still troubled by the thought of the recurrent cancer inside me, of course, but I’m trying to be thankful for days that approach normalcy, for the absence of symptoms and for the absence of the need to pursue further treatment at this time.

Sure, life’s imperfect. I’d prefer to still be in remission, or to be pronounced cured. But this life is the only life I've got.

Tomorrow morning, Claire and I pick up Ania at the airport, as she returns home from her freshman year of college. We’re looking forward to seeing her.

Life – even an imperfect life – is good.

May 15, 2008 - Concierge Medicine?

A couple of nights ago, Claire and I attended an informational meeting put on by our family-practice physician, Dr. David Cheli. Starting this July, he’s associating himself with a nationwide group called MD-VIP. This decision will bring big changes for his patients.

For us patients, there’s some good news and some bad news.

The good news is, Dr. Cheli’s going to be focusing very intentionally on preventive medicine. Each patient will receive an elaborate annual physical, including a host of diagnostic tests. That physical exam takes about one and a half hours, and is – the company claims – comparable to the “executive physicals” long offered by world-class medical facilities like the Mayo Clinic. Each patient gets a personalized website with health-related resources, and a mini-CD-ROM containing personal medical history to carry around and present to emergency-room doctors, if necessary. Dr. Cheli also promises to be available 24/7 by cell phone, and further promises that no patient will ever have to wait longer than one day for an appointment. He’ll continue to take all medical-insurance plans for routine office visits – no change there, he assures us.

Dr. Cheli will continue to have a solo practice, but he’s cutting his roll of patients from 2,700 to 600. That’s what makes the more personal attention possible.

OK, that’s the good news. Now for the bad news. Each patient must pay an up-front fee of $1,500 a year – which (except for, perhaps, a small portion) is not covered by insurance.

Do the math. 600 patients times $1,500. That’s 900 grand. Dr. Cheli doesn’t get all of it, of course. MD-VIP gets their cut, and those elaborate tests associated with the annual physical do cost something. Yet, what he does receive from these annual fees is evidently enough to cut his patient roll by more than three-quarters.

I can understand what’s in it for him. As he explained the other night at the public meeting, he’s been practicing medicine for 31 years. Along with many of his colleagues, he’s feeling increasingly frustrated with a health-care system that forces him to rush through patient appointments so he can spend hours on the phone arguing with insurance adjusters. He knows the type of medicine the system forces him to practice isn’t as good for his patients as the type of medical care he was trained to deliver.

MD-VIP claims their patients’ hospitalization rates are just 65% of the general population. They attribute this to two causes: better prevention, and same-day or next-day appointments (which allow MD-VIP doctors to identify and treat serious conditions in the office, keeping their patients out of the emergency room).

That may be part of it, but I’d be willing to bet that a significant portion of this favorable statistic can be explained by the fact that patients willing to pony up the $1,500 fee are younger and healthier to begin with.

Why do I say that? Several reasons. First of all, MD-VIP relies heavily on the internet. Patients have to be familiar enough with computers to derive the full advantage from this service. While some senior citizens have taken to the internet with a vengeance, a great many still don’t know the difference between hypertext and hyperactive. Second, chronically sick people are more likely to have burned through their financial resources and would have a harder time coming up with the $1,500 annual fee. Third, patients who see the value of preventive medicine, and are willing to pay for it, are more likely to have already adopted positive lifestyle habits. (How many chain smokers or alcoholics are willing to go for this?) Fourth, those who simply have an aversion to going to the doctor are not likely to pay top dollar for the privilege of spending more time doing the thing they hate.

So, Claire and I have a tough decision to make. We both really like Dr. Cheli. He’s been our family doctor for 17 years. He diagnosed my cancer before I was displaying any obvious symptoms. He’s a got a caring bedside manner, and he’s always been responsive to our needs. But, can we find the $3,000 a year to keep going to him?

My medical insurance, provided by the Presbyterian Church (U.S.A.), has a preventive health benefit that reimburses 100% of the cost of an annual physical, independent of deductibles and co-payments. That benefit’s got a cap on it, though, that falls way short of $1,500 for each of us. Most of the MD-VIP fee we’d have to pay out of pocket.

If Dr. Cheli will be able to work with me to overcome my #1 preventive-medicine challenge – losing weight – it will be money well spent. But, will the MD-VIP philosophy really give him the time and resources to do that? Is it really as good as the rosy description on the website claims?

They call this “concierge medicine” (although MD-VIP's website disavows this label, saying they’re “beyond concierge healthcare”). As with any pricey “concierge floor” in a hotel, the question is, “will we get our money’s worth out of the enhanced service?”

Or, is this one of those situations where, as they say, “if you have to ask the price, you can’t afford it”?

May 12, 2008 - Unbroken

At the age of 20, Jerry White lost his leg – and nearly his life – as he stepped on a landmine while on a camping trip in Israel. Later, he went on to work as a leader of the International Campaign to Ban Landmines and become co-founder of Survivor Corps. White has just published a book about how to survive a catastrophic life event. Here’s a selection:

“They say what doesn’t kill you makes you stronger. It’s not quite that simple. I believe you have to decide it will make you stronger. Experience has taught me that happy endings can never be taken for granted. They must be chosen. When I was in the hospital for six months in Israel, no one did my physical therapy for me. No one underwent the pain or the fear of six operations for me. I would have liked for someone to, maybe. I confess, the first time I was put in a wheelchair, I sat there and waited for someone to push it for me. I had just had another surgery, I was weak, in pain, exhausted. And when I looked up at my nurse, she looked down at me and laughed. “If you want to move, push.” And so, I did. And I continue to do.

Whether we like it or not, personal determination is required to build resilience – to become fit for whatever the future may hold. We have to tap inner resources and develop some emotional muscle. It’s both a discipline and our responsibility. No one can do it for us.

The good news is we are not alone. We are surrounded by survivors who have gone before us, and their examples will help mark the way forward.”(I Will Not Be Broken: 5 Steps to Overcoming a Life Crisis, from the Introduction.)

White’s experience was of a sudden, traumatic injury. One moment, he was hiking with two friends through the Israeli countryside. The next moment, the earth exploded around him, and his right foot disappeared. The next day, he lost more of his right leg to the surgeon’s knife.

Even so, I think White’s conclusions can be generalized to include the experience of being diagnosed with a slowly-progressing disease like cancer. In the book, he recalls a conversation he had with Princess Diana, with whom he worked as an anti-landmine activist. Touring Bosnia and speaking with survivors, they observed that everyone seemed to have “their date.” They could all state precisely on which date they had been injured or bereaved.

Many of us cancer survivors can do the same with our dates of diagnosis (mine was December 2, 2005). Before that date, we may have a suspicion something is wrong, but we still have the luxury of hoping it’s nothing serious. After that date, we can never return to such naiveté. We will, forever after, be cancer survivors.

White identifies five essential steps in coming to terms with a life crisis. I think they can be generalized to include the experience of receiving a cancer diagnosis:

1. FACE FACTS. One must first accept the harsh reality about suffering and loss, however brutal. “This terrible thing has happened. It can’t be changed. I can’t rewind the clock. My family still needs me. So now what?”

2. CHOOSE LIFE. That is, “I want to say yes to the future. I want my life to go on in a positive way.” Seizing life, not surrendering to death or stagnation, requires letting go of resentments and looking forward, not back. It can be a daily decision.

3. REACH OUT. One must find peers, friends, and family to break the isolation and loneliness that come in the aftermath of crisis. Seek empathy, not pity, from people who have been through something similar. Let the people in your life into your life. “It’s up to me to reach for someone’s hand.”

4. GET MOVING. Sitting back gets you nowhere. One must get out of bed and out of the house to generate momentum. We have to take responsibility for our actions. “How do I want to live the rest of my life? What steps can I take today?”

5. GIVE BACK. Thriving, not just surviving, requires the capacity to give again, through service and acts of kindness. “How can I be an asset to those around me, and not a drain? Will I ever feel grateful again?” Yes, and by sharing your experience and talents, you will inspire others to do the same.(I Will Not Be Broken: 5 Steps to Overcoming a Life Crisis, from Chapter 1.)

There’s something of an up-by-the-bootstraps character to this way of thinking, but I think it makes good sense. We all depend on our medical professionals, family and friends to do things for us, but ultimately we’ve got to claim responsibility for our own healing.

May 11, 2008 - Outsourcing Health Care

I ran across a factoid not long ago that’s set me to thinking. In a Newsweek article by Fareed Zakaria, I came across this statistic: “U.S. carmakers now employ more people in Ontario, Canada, than Michigan because in Canada their health care costs are lower.”

Wow. That’s a telling snippet of information. The economy of the Detroit metro area – long the traditional heartland of the American automobile industry – has in recent years been devastated by layoffs and plant closings. I’ve heard that part of the reason for this – besides competition from Japan, Korea and other countries – is the heavy pension-and-benefits packages the big U.S. automakers have to bear, particularly for their retirees.

I never imagined, though, that these companies would find a way to outsource their medical benefits: by packing up their manufacturing plants and moving them lock, stock and barrel across the river to Canada.

Canada, of course, has a national health plan. Their workers’ health benefits are paid for by the government. The American auto executives, while urging “Buy American!” out of one side of their mouths, are whispering “Buy Canadian!” out of the other, with respect to health care.

It’s hard to imagine a more telling indictment of our health-care funding system than this. Our broken system has become a problem that’s bigger than the privations of individuals and families. It’s affecting the economic health of our entire nation.

May 5, 2008 - How Doctors Think

This morning, I finish reading How Doctors Think, by Jerome Groopman, M.D. I’d give this book an unequivocally positive recommen- dation. It’s one every patient should read.

That’s no exaggeration. I really mean it.

The book’s important because of the light it sheds on a mysterious chemistry: that of the doctor-patient relationship, particularly when it comes to diagnosis. As we patients lay down our magazines and make our way from the waiting-room into that medical holy of holies, the examining-room, many of us look for something magical to happen there. Doctors, clad in their priestly, lab-coat vestments, shuttle from room to room. We’re a little in awe of our doctors. They have the gift. The whole medical system is designed to maximize their precious time, so more patients can have their few brief moments in the presence of the gift of diagnosis.

The higher you climb up the ladder of medical specialists, it becomes less likely your doctors will occupy themselves with routine matters like asking medical-history questions or taking vital signs. Nurses and aides – and, in teaching hospitals, doctors-in-training – typically perform such tasks. If the system is working as it should, their careful observations will be laid out before the doctor as he or she performs the cognitive process leading to diagnosis and treatment. If the system’s not working well, the doctor’s understanding of the patient will be superficial, and mistakes become more likely. Decisions may be made in a two-dimensional way: mechanically matching up symptoms with slots on a treatment-protocol flow chart, ignoring the living, breathing, thinking complexity of the human being who’s sitting on the edge of the examining-table.

Groopman unpacks the mysterious, priestly work of diagnosis and treatment for us laypeople to understand. He probes the meaning of the diagnostic gift, and asks how it can best be utilized. He reminds us of a very old-fashioned idea: that medicine is an art as well as a science.

Groopman’s point is that a clinical consultation in a doctor’s office is an act not only of number-crunching scientific analysis, but also of communication. In the examining-room, two people come together and talk. What they say – and, often, what they don’t say – can mightily determine the outcome.

I come away from this book with a renewed appreciation for two types of physicians: the unsung, relatively underpaid family-practice doctors whose intuitive diagnostic skills are honed to a fine edge, and those specialists who possess the strength of character to buck the system’s pressures to think only in terms of numbers, not the person. It’s no wonder Groopman’s final chapter is entitled, “In Service of the Soul.”

I think back to my own experience of diagnosis. Groopman could have used it as an example in his book. I go into David Cheli’s office for an annual physical. Aware that I’m nearing 50, I mention the fact that my father nearly died of a dissecting aortic aneurysm. I know these can be hereditary, I tell the doctor. Is this something I should be checked for?

“That’s unlikely,” says Dr. Cheli. “You don’t smoke, and your blood pressure is fine.” He sends me on my way, with the usual encouragement to lose weight and exercise more.

At the next year’s annual physical, I mention an aneurysm again. I’m not reporting any symptoms relevant to such a diagnosis, but it’s been on my mind, for some reason. Thinking back to that time, I now realize that maybe, on some subconscious level, I was aware that the mid-section of my body felt somehow different. If you’d asked me directly about it, though, I would have scoffed at the suggestion. (In retrospect, I realize I was experiencing one symptom relevant to lymphoma, night sweats – but I wasn’t attuned enough to mention it to the doctor.)

What I could articulate, on a conscious level, was a vague anxiety that I could end up like my father someday – being airlifted to a major medical center for a herculean operation to replace a split-open section of my aorta with a nylon substitute. It wasn’t a rational thought – but, as it turned out, it did have a kind of truth behind it.

Who knows what went through Dr. Cheli’s mind, at that point? Here’s a patient – overweight and a bit stressed-out, but otherwise healthy – worrying for the second year in a row about a medical condition for which he doesn’t fit the profile and doesn’t have the usual symptoms.

What Dr. Cheli did was send me for an ultrasound scan of the abdomen. Did he have a reason for doing so, other than my repeated question about an aneurysm? Was he ordering that relatively inexpensive test simply to give me peace of mind, or did he intuitively suspect something else was up? I don’t know. But, I’m awfully glad he did order the ultrasound. It was in the grainy images on that screen that the bulky tumor in my abdomen was first revealed.

The light bulb goes on for me, this morning, as I read these words from the Epilogue to Groopman’s book, about the thoughts that may go through our minds, as patients, as we talk to the doctor: “Our notions sometimes come from knowing a friend or relative with a similar symptom, or ideas may have been sparked by looking on the Internet. Our thoughts about our unrelieved symptoms often focus on the worst-case scenario. Such self-diagnosis is a reality that neither patient nor physician should ignore. Since the doctor may not address it, you should. ‘I’m most worried that what seemed like acid reflux could be the first sign of cancer,’ one patient might say. Or another might recount to the doctor how her friend was told she had indigestion but it was actually a brewing heart attack.... A thoughtful doctor listens closely to these worries.” [Jerome Groopman, How Doctors Think (Houghton Mifflin, 2007), p. 261.]

Thanks, Dr. Cheli. Thanks for listening.

May 1, 2008 - Fill in the Blank: My Cancer...

On April 29, Leroy Sievers posted a request on his My Cancer blog on the National Public Radio website. It attracted hundreds of replies from readers. Leroy simply asked his readers to complete a sentence: “My cancer....”

The replies he got were many and varied. I’m copying a selection of them below. I’ve included only those that come from cancer survivors themselves – there were many other noteworthy responses that begin, “My husband’s cancer...” or “My wife’s cancer...”, but those are a subject for another day.

I’ve only included responses that are positive, that speak of learning or growth or gratitude. There were some negative responses, of the "cancer sucks" variety – expressions of anger, pain, sadness, loss – but not nearly so many as you may think.

I’d guess there were 3 or 4 positive responses for every negative one. I’ve omitted the negative ones not because they don’t have validity (indeed, I think ANY honest response to cancer is valid), but simply because I’m more interested in the ways cancer has changed its survivors for the better.

If you want to read some more of the responses, I’d suggest you visit Leroy’s blog.

My cancer reminds me that no one is permanent and I will not be the exception to this. Also, my cancer has taught me that life and health is process not a final destination.

My cancer has made me more compassionate and more appreciative of the time I have left....

My cancer made me stop taking myself so seriously....

My cancer has taught me who my true friends really are...

My cancer has taught me valuable lessons about living, loving, and dealing with things, all of which I would have been happy to have learned from a book instead.

My cancer was a great teacher. It taught me gratitude, hope and that not everything is within my control....

My cancer grounded me in reality; made me more empathetic and compassionate for the suffering of others...

My cancer taught me I was stronger than I ever knew....

My cancer reinforced for me what is truly important in life – God, family, friends – pretty much in that order. And conversely, that I could safely put aside, career, status, things....

My cancer has given me FREEDOM I never had. I don't worry. I don't fret. I am free. I faced the beast. Lived and live with it. My shoulders are broader than I ever thought, and I can handle anything. The Beast may be lurking, but he is wasting his time....

My cancer finally made me give up, at 58, the illusion that I was still just a kid in a grown-up body. But I've worked hard to regain the feeling and find myself looking at children with more joy.

My cancer helped change the direction of my life. Time became precious and relationships even more important....

My cancer made me so aware.

My cancer has taught me that every day on this side of the grass is a Good Day!

My cancer taught me the power of others’ prayers for me. It also taught me humility.

My cancer sucked me up in a slashing, burning, poisoning tornado, then set me down in a new place, headed in different direction. I'm a better person since cancer, and in whatever time I have left, I'll add more to the world.

My cancer... has shown me what the real difference is between "wheat" & "chaff" in my life. It's a lot easier to deal with life's little irritations now....

My cancer has been a “life sentence.” A poster I found not long after my diagnosis and treatment says it all: “Everything changed the day she figured out there was exactly enough time for the important things in her life.”

My cancer showed me how much my husband really loves me and that his love truly is unconditional.

My cancer has enabled me to know both the fragility and the hopes of life, and with this knowledge to live most fully.

My cancer has brought out the talents, skills, devotion and strong faith for those that care for me. That is my reward, watching from my “cancer” vantage point as others improve their life’s journey.

My cancer will not define me or become the be and end all of my life. What it has done is make me stop and be aware that I am not the center of the Universe, and that I must be attuned to others, their ideas and needs.

My cancer has made me face up to the many things that were wrong with my life, and fix them.

My cancer brought me face to face with death. And that made me realize how important the gift of eternal life really is, and how glad I am I have it through my relationship with Jesus Christ. No outcome is bad now – if I live, that’s great, and I’m embracing life.
If I die, I go to heaven, a place of eternal rest and peace. And that’s a rather wonderful “backup.”

My cancer... saved my life.

My cancer taught me to pare down to the essentials in all things – to live large and travel light – trusting in the power of kindness and love to lead me where I need to go.

My cancer was the best worst thing that ever happened to me.

My cancer has made me worry less about what I can't control.

My cancer has... stretched my gratitude muscles but I have learned to be very, very grateful for the smallest of things.

My cancer taught me that I am living and dying at the same time. The living feels so full and so intense, filled with exquisite beauty and wonder. The dying feels like I am tearing away all the layers, seeing parts of me I didn't know were there, and it hurts, but just a little. And I am also learning forgiveness and gentleness and a lightness of being that will hopefully let me die with peace and grace.

My cancer has humbled me.

Cancer stripped me of my hair, breasts, uterus, ovaries, eyebrows, eyelashes, 60 pounds of excess weight, career, and marriage. But I looked in the mirror one morning and saw big green eyes, a beautiful smile and a spirit that filled the entire room and said “There you are. I wondered where you were all these years. Welcome home.”

My cancer has taught me patience....

My cancer is the thief of all the opportunities life has to offer, yet also the perspective by which I appreciate everything more.

My cancer taught me to “let it go”....

My cancer has taught me to treasure, not mourn, transience. Because the beauty of this spring will fade, or because it might be my last, does not make it less glorious.

My cancer is not me. My cancer has tried to change me. My cancer has tried to take me. But it only made me more and more what I am before my cancer. It made me discover parts of me that cancer cannot touch. Indestructible hope. An ability to laugh. A mind of my own.

As for me, I posted a response as well:

My cancer has made me a better pastor, husband and father.

If you're a cancer survivor (or someone who loves someone who's had cancer), why not try filling in the blank? Click on "Comments" and post your response here. Pass it on!

April 26, 2008 - Comfort and Strength

I’ve subscribed, this month, to a short-term “e-course” on Spirituality and Illness, through the website, SpiritualityAndPractice.com. There are brief, daily readings that arrive by e-mail, and an online message board participants can use to communicate with one another. Yesterday’s topic was “Find a Source of Comfort.” I was struck by the following excerpt from a book, No Enemies Within: A Creative Process for Discovering What’s Right About What’s Wrong, by Dawna Markova (Conari Press, 1994):

“When I was in the hospital, the one person whose presence I welcomed was a woman who came to sweep the floors with a large push broom. She was the only one who didn't stick things in, take things out, or ask stupid questions. For a few minutes each night, this immense Jamaican woman rested her broom against the wall and sank her body into the turquoise plastic chair in my room. All I heard was the sound of her breath in and out, in and out. It was comforting in a strange and simple way. My own breathing calmed. Of the fifty or so people that made contact with me in any given day, she was the only one who wasn't trying to change me.

One night she reached out and put her hand on the top of my shoulder. I'm not usually comfortable with casual touch, but her hand felt so natural being there. It happened to be one of the few places in my body that didn't hurt. I could have sworn she was saying two words with each breath, one on the inhale, one on the exhale: ‘As... Is... As... Is...’

On her next visit, she looked at me. No evaluation, no trying to figure me out. She just looked and saw me. Then she said simply, ‘You're more than the sickness in that body.’ I was pretty doped up, so I wasn't sure I understood her; but my mind was just too thick to ask questions.

I kept mumbling those words to myself throughout the following day, "I'm more than the sickness in this body. I'm more than the suffering in this body." I remember her voice clearly. It was rich, deep, full, like maple syrup in the spring...”

I’ve been thinking about that word, “comfort,” ever since. It’s built from the Latin word fortis, which means “strong.” To comfort others is, literally, to make them strong. It is to build a fort around them, so they may withstand whatever threat may come.

It’s what that nameless Jamaican cleaner did for the woman telling the story. It’s significant to me that she was the only one who came into that hospital room without a specific, healing task to perform (at least, as “healing” is typically defined by the medical professions). Yet, this woman - an angel, really - had a way of healing by her very presence.

We’ve pretty much lost that sense of the word, in our culture. “Comfortable” has degenerated into “comfy” – as in a comfy chair. When we speak of “creature comforts,” we usually mean something that makes us softer, rather than stronger.

It calls to mind these famous words of the prophet Isaiah. They mark a continental divide in that biblical book, as the prophet changes from confronting a sinful people to comforting an exiled people:

“Comfort, O comfort my people, says your God.
Speak tenderly to Jerusalem, and cry to her
that she has served her term, that her penalty is paid,
that she has received from the Lord’s hand double for all her sins.” (Isaiah 40:1)

“Comfort” calls to mind, also, an old Fanny Crosby gospel hymn – one I haven’t thought of for a very long time – “All the Way My Savior Leads Me”:

“All the way my Savior leads me –
What Have I to ask beside?
Can I doubt His tender mercy,
Who through life has been my guide?

Heavenly peace, divinest comfort,
Here by faith in Him to dwell!
For I know whate’er befall me,
Jesus doeth all things well.”

This is the sort of comfort that goes far beyond simply saying “There, there” to a crying child. “Heavenly peace, divinest comfort” gives people of faith the strength to go on.

April 18, 2008 - Cancer and Sin

“Cancer” and “sin” are two words that truly don’t belong together – yet, how easy it is to pair them up anyway!

There’s a part of us that wants to assign blame for cancer. What’s the first question many of us ask, when we hear of someone diagnosed with lung cancer? “Did she smoke?” As if that makes a difference. Somehow, a non-smoker with lung cancer belongs to a different order, in our minds, than a smoker struggling with the same disease. Aren’t both worthy of our compassionate concern, as they sit side by side in the oncologist’s waiting room?

It’s more comforting, somehow, to hear of a smoker who gets lung cancer, than a non-smoker who does. It feeds our craving to see the universe as a fundamentally fair place.



Relatively few cancers have a clear lifestyle- or behavior-related cause. Sure, there are all sorts of theories out there about environmental causes of various cancers, but only a few (smoking for lung cancer, asbestos exposure for mesothelioma, sun exposure for melanoma, sexual promiscuity for some cervical cancers) are established beyond doubt. To say “So-and-so got cancer because _____” is appealing, for it allows us to scratch another cancer off the lengthy list of those that simply are – scourges that descend upon a human life without warning and without apparent cause.

Those cancers – like the non-Hodgkin lymphoma I have – are truly scary. They seem so random.

Some people, having exhausted the possible environmental or lifestyle causes, move on to theology. They want to view cancer as God’s punishment for sin.

I’ve been reading Dancing in Limbo: Making Sense of Life After Cancer, by Glenna Halvorson-Boyd and Lisa K. Hunter (Jossey-Bass, 1995). I’m not exactly living a life after cancer, myself, but there are some aspects of my extended, asymptomatic watch-and-wait existence that are similar to life after cancer. I’m struggling, these days, with survivorship issues, which is why I picked up this book. Anyway, here’s a perceptive passage from it, about how common it is to view cancer as God’s punishment:

“Although the notion that cancer is a punishment for our sins may remain unconscious or unspoken, it appears to be present in a surprising number of cancer patients and their family members. A recent study of Canadian children with cancer and their parents by David Bearison and his colleagues revealed that half of the adults blamed themselves for their child's cancer. (Only 20 percent of the children practiced self-blame.) What the parents blamed themselves for directly was a sin. They actually believed that their use of illicit drugs or their adultery had caused the child's cancer. The parents' reasoning defied medical science but reflected their belief that sin will be punished.

For many of us, the idea of cancer as a direct punishment for our sins is too antiscientific to believe. However, if we examine the causal theories we create, we may find sin lurking just below the surface of our reasoning. For example, women who are sexually active at an early age and have many sexual partners are, in fact, at higher risk for cervical cancer. Disentangling the “sin” (of “promiscuity”) from the science (of statistical risk) in cervical cancer is difficult at best. Even if the form of cancer that we have does not appear directly linked to behavior that we feel guilty or ashamed about, we may, like the Canadian parents, nevertheless imagine it to be a retribution for our sins.” (Dancing in Limbo, p. 43.)

Why do so many of us practice such faulty logic, wanting to assign blame where none is deserved? It’s because there’s something that scares us even more than sin and retribution: the thought that, as Jesus teaches, God “sends rain on the righteous and on the unrighteous” (Matthew 5:45). Which is a scarier universe to live in: one ruled by a petty, vindictive God who’s quick to smite sinners for their transgressions, or one in which God allows two-year-olds to die of brain tumors for no apparent reason?

Halvorson-Boyd and Hunter boil it down to a twisted little syllogism: “Our primitive sense of justice is ruled by a cruel logic: if we want to believe that we will get what we deserve, then we must deserve what we get” (p. 44).

And so, many of us cancer survivors wallow in self-blame. I’ve had a few moments in the past few years when I’ve wondered what I might have done to so anger God, but – I’m happy to say – that hasn’t been a major theme for me. After nearly 25 years in ministry, I’ve heard the “Why me?” question so often, from saints and sinners alike, that I really don’t believe illness is God’s punishment. In those awful months just before and after my diagnosis, I did feel considerable anger over my plight, but I wasn’t much inclined to direct my anger at God. I was more inclined to say, “Life is unfair” than “God is unfair.”

Bottom line? None of us deserves to have cancer.

April 17, 2008 - Stayin' Alive

OK, this one's just for fun. Take a look at this YouTube video. It's from a new documentary film, Young@Heart, about a filmmaker who decides to spend 7 weeks with a group of retired folk who love to sing, and who are open to musical choices that are a bit off the beaten track for their age group, according to conventional wisdom.

Stayin' alive... it's what we're all trying to do.

April 16, 2008 - More on the Kanzius Machine

On November 6, 2007, I wrote about an inventor named John Kanzius, who has invented a machine he thinks will be able to cure many kinds of cancers. His machine uses radio waves to heat up metal nanoparticles that have been injected into a patient’s body, and chemically targeted to attach themselves to cancer cells.

This past Sunday, CBS News’ 60 Minutes show highlighted Kanzius’ work. The segment told how well-respected researchers at two major cancer centers are currently running experiments to see if there’s anything to it. So far, they’re feeling encouraged.

It seems incredible that a retired guy tinkering in his garage could come up with a cure for cancer, but stranger things have happened in the world of inventions.

In some ways, Kanzius’ idea is similar to the radioimmunotherapy drugs Bexxar and Zevalin – only, instead of using radioactive particles bonded to a targeting agent like the monoclonal antibody rituximab, it would use non-radioactive particles of ordinary metal, then let radio waves heat those particles, cooking the malignant cells to death from within.

It all depends on the delivery system: getting those microscopic particles of metal to burrow into the cancer cells. Rituximab can probably do it – which could be good news for blood cancer patients.

It’s an intriguing idea, although still not ready for prime time. CLICK HERE for the 60 Minutes segment.

April 15, 2008 - The Numbers Game

Things are looking up for people with non-Hodgkin lymphoma – if the statistics are any guide.

A news article from about a month ago reports on a German study of survival rates of people with NHL, based on U.S. statistics kept by the National Cancer Institute:

“Two-thirds of patients diagnosed between 2002 and 2004 will survive at least five years, compared to half of patients diagnosed between 1990 and 1992, according to the study published in the Archives of Internal Medicine.

Ten-year survival rates were projected to rise to 56 percent in patients diagnosed from 2002 to 2004, up from 39 percent in 1990-1992, the researchers found.”

The researchers also found that, the younger you are, the more likely you are to be on the survivor side of the equation (no surprise, there).

What accounts for the improvement? Two things, say the researchers. The first is the impact of rituximab (trade name: Rituxan), the monoclonal antibody therapy I received along with my chemotherapy. While Rituxan doesn’t work on all non-Hodgkin lymphomas (only those with the CD-20 protein on the surface of affected cells), it is effective against the B-cell lymphoma I have.

The second factor is improvements in treating patients who have HIV-AIDS. Lymphoma is a frequent secondary complication of HIV. If fewer people in the general population are suffering from out-of-control AIDS, then that means a smaller percentage of today's lymphoma patients have previously been weakened by that disease – which means the overall, average survivability of lymphoma goes up. That has no bearing on my situation, of course, but it does affect the overall numbers.

So, what should I make of these statistics? It’s always dicey for us cancer patients to look at our own disease through the prism of statistics. The numbers can become a self-fulfilling prophecy. (That’s why some oncologists are reluctant to give a direct, statistical answer to the question, “Give it to me straight, Doc, how long have I got?”).

But even so, the statistics seem to be calling my name. I feel the temptation to regard these numbers as a sort of road map for the rest of my life. Let’s see... I was diagnosed in 2005, at age 49 – just one year later than the group that’s the subject of the study. If 10-year survival rates are projected to rise to 56 percent for patients diagnosed between 2002 and 2004, then that ought to mean people diagnosed in my year will do at least as well, if not a little better. From the glass-is-half-full standpoint, that means I share the bounty.

On the other hand – from the glass-is- half-empty standpoint – that means my chances of living into my sixties are just a little better than a coin-flip. No wonder I can’t get life insurance!

Of course, these numbers include not only lymphomas that are treatable with Rituxan, but also those that aren’t. That – along with my relative youth – gives me a better-than-even chance of getting into the right 50%, the group that wins the coin toss.

Statistics aren’t a road map, of course. We can’t plan our lives by them. If we try, we’ll like as not end up in a ditch.

You’ll understand, though – won’t you – if I take these numbers as a reason to feel just a little encouraged?

April 12, 2008 - The Dance Goes On

This morning, I conduct a funeral for someone I’ve never met.

It’s not that unusual an occurrence, in parish ministry. From time to time, one of the local funeral directors calls me, and asks if I’m free to conduct a service in the funeral home. Usually, it’s a case of the deceased having no current church membership. Often, there’s some tenuous history of church involvement – sometimes Presbyterian, other times something else.

The funeral directors know I generally say yes to such requests. I consider it an important part of the church’s ministry to the larger community.

Kay, whose funeral this is, had some connection with a Lutheran church in a nearby town, but the pastor had another commitment today. Rather than postponing the service, the family decided to let the funeral director find a minister. That’s how I got the call.

Yesterday, when I went over to the funeral home to meet with Kay’s daughter, I learned that Kay loved ballroom dancing. I also saw a snippet of video, of her dancing with her husband. This wasn’t your garden-variety, wedding-reception stuff. I’m talking “Dancing with the Stars,” Fred-and-Ginger elegance – ball gowns, tuxedos, the works. The woman I saw in those brief moments on the screen fairly soared across the dance floor, moving with joy and grace. She looked like she was having the time of her life.

Kay’s daughter told me of a woman who’d known a lot of disappointment in her life, with a couple of failed marriages in her past. She’d finally found happiness with her third husband – ironically, just about the time she was diagnosed with endometrial cancer. Eight years of treatments later, it was all over. She was only in her 60s when she died – still young, by today’s standards. It hardly seems fair.

In planning the service, I decided to depart from the old-standby scripture readings. There’s nothing wrong with them, but for today I felt we needed something different. So, I went on a hunt for Bible passages dealing with dance. I found more than I’d expected.

Lamentations 5:14-15 tells of how hard it is to dance when you’ve had a devastating loss – in this case, the fall of your country to foreign invaders:

“The old men have left the city gate,
the young men their music.
The joy of our hearts has ceased;
our dancing has been turned to mourning.”

The poetry of Lamentations is traditionally attributed to Jeremiah – and, if that’s true, it’s remarkable how much his tune has changed in his better-known book, the prophetic book that bears his name, as he speaks for the Lord:

“I have loved you with an everlasting love;
therefore I have continued my faithfulness to you.
Again I will build you, and you shall be built, O virgin Israel!
Again you shall take your tambourines,
and go forth in the dance of the merrymakers....

Hear the word of the Lord, O nations,
and declare it in the coastlands far away;
say, “He who scattered Israel will gather him,
and will keep him as a shepherd a flock.”
For the Lord has ransomed Jacob,
and has redeemed him from hands too strong for him.
They shall come and sing aloud on the height of Zion,
and they shall be radiant over the goodness of the Lord,
over the grain, the wine, and the oil,
and over the young of the flock and the herd;
their life shall become like a watered garden,
and they shall never languish again.
Then shall the young women rejoice in the dance,
and the young men and the old shall be merry.
I will turn their mourning into joy,
I will comfort them, and give them gladness for sorrow.”
(Jeremiah 31:3b-4, 10-13)

“Our dancing has been turned to mourning,” says Lamentations. Now, the Lord says through Jeremiah, “I will turn their mourning into joy.” Clearly, this passage is all about God providing, one day, changed circumstances – circumstances propitious for the dance.

Psalm 30:5 provides a similar assurance that “Weeping may linger for the night, but joy comes with the morning.” The psalmist then goes on to declare:

“What profit is there in my death, if I go down to the Pit?
Will the dust praise you? Will it tell of your faithfulness?
Hear, O Lord, and be gracious to me! O Lord, be my helper!”
You have turned my mourning into dancing;
you have taken off my sackcloth and clothed me with joy,
so that my soul may praise you and not be silent.
O Lord my God, I will give thanks to you forever."
(Psalm 30:9-12)

What sort of dance is this? Not a rock dance, and not ballroom dancing, either, but probably something more like the circle dances of many near eastern and Mediterranean folk-dance traditions. They’re the sort of dances in which everyone participates, everyone finds a place. Eventually, the circle moves as one, becoming like a single dancer.

I tell the people, then, a story from the Hasidic Jewish tradition, about a famous rabbi who had been asked to come to a particular village to share his teachings. The village was looking forward to his arrival with great anticipation. Each person considered carefully what question to ask the holy man.

When the rabbi finally arrived, they ushered him into a large room, but he didn’t do what they expected. He walked silently around the room, softly humming a Hasidic tune. Before long, everyone found themselves humming along with the music and swaying to the rhythm. Before long, the whole community had formed up into circles, dancing ecstatically. They felt the presence of God in their midst as never before.

The dancing went on late into the night. Finally, the rabbi put up his hand and brought the swirling motion to a stop. Slowly he walked around the room, looking into each person’s eyes and saying, “I trust that I have answered all your questions.”

Sometimes there just aren’t the words. Sometimes the powers of logic are insufficient to the task. Sometimes the only thing to do is to put one foot in front of the other, in the time-honored patterns of the worship dance.

One of staples of the Christian folk-music tradition is Sydney Carter’s “Lord of the Dance” (no, not the Michael Flatley Irish step-dancing extravaganza, but a lilting hymn that depicts Jesus’ life and ministry in terms of a dance). The refrain goes like this:

“Dance, then, wherever you may be
I am the Lord of the Dance, said he.
And I’ll lead you all, wherever you may be,
And I’ll lead you all in the dance, said he.”

The song goes on to tell how Jesus danced through his teachings and healings, even right up to the cross. When he died, it seemed to his followers like the dance died with him. But then comes this verse:

“They cut me down and I leapt up high.
I am the life that'll never, never die.
I’ll live in you, if you live in me.
I am the Lord of the Dance, said he.”

Sydney Carter himself died 4 years ago. The fame that accrued to “Lord of the Dance,” disproportionate to anything else he’d written, made him kind of a “one-hit wonder” – and he knew it. So, it’s perhaps not surprising that he chose to have these words carved into his tombstone, recalling his famous song:

“Coming and going by the dance, I see
That what I am not is a part of me.
Dancing is all that I can ever trust,
The dance is all I am, the rest is dust.
I will believe my bones and live by what
Will go on dancing when my bones are not.”

I tell the grief-stricken people in the funeral home that what we are about here, today, is reminding one another that the dance of life goes on - in this life as well as the next. Cancer cannot stop it. It surely can’t. In Christ, the dance goes on.

Robin, our church’s associate pastor, shared with me these words from an early Christian tomb inscription. I don’t have a source for it, but it sounds like the sort of thing those early Christians believed with all their hearts:

“No sorrowful tears, no beating of the breast
For a safe repose has taken me. I dance
Ring dances with the blessed saints
In the beautiful fields of the righteous.”

Yes, indeed. In places and in ways we can only imagine, the dance goes on.

April 4, 2008 - Lost in Transition

Here’s a video, “Lost in Transition,” profiling the broad range of issues faced by cancer survivors. It’s fairly long: just over 17 minutes, so get yourself a cup of coffee or do whatever you have to do, before you click on the arrow to view it...



What I like about the video is that it holds up the whole issue of survivorship, which is huge – and getting huger all the time, as more cancer patients live longer lives, thanks to advances in treatment. There once was a time, as the video points out, when a cancer diagnosis was considered a death sentence. Now, there are tens of millions of cancer survivors walking around – and many of us have issues.

The problem becomes acute, for a good many of us, at the moment when treatment ends. Friends, family and co-workers seem to expect us to abruptly make the transition from fighting for our lives to business as usual.

That’s just not going to happen. Cancer is life-changing. Paradoxically, this deadly disease teaches us lessons about living that can’t be learned in too many other places. That’s a good thing – one of the few good things that come out of this tough experience.

Yet, there are a lot of bad things that emerge after cancer treatment, some of which continue long after the last dose of chemo or radiation. Some of us survivors face psychological issues. Others struggle with paying off medical bills, or with workplace difficulties. Still others have a vague sense that cancer has trained us for something, but we’re not sure what.

Although, as a rule, I shun the military metaphor for survivorship – like the “long battle with cancer” we read about in so many obituaries – I’m struck by what one woman says in the video. She says she feels like a soldier, returned home from the war: not quite knowing what to do with herself.

That’s kind of like where I am right now. Yes, my remission is over, which means I continue to go back for scans every 3 months. There’s still cancer in my body, even though there’s no sign I’ll need treatment any time soon. I’m not like those survivors in the video who are concerned they’re no longer getting any care from their doctors. I still make monthly pilgrimages to Atlantic Hematology/Oncology for my port flushes, and every three months I sit down for a little chat with Dr. Lerner. Those things keep me connected enough.

It’s hard, though, to take up life’s larger tasks and projects, because I’m never sure when a scan might reveal swollen lymph nodes large enough to treat, and the wild ride will begin all over again. Will it be months? Or years? Or never?

That’s my survivorship issue. Maybe I’m still “lost in transition” as well.

April 2, 2008 - 3 out of 5 Doctors Surveyed Agree

“3 out of 5 doctors surveyed agree...” Sounds like an advertising pitch, doesn’t it? Wonder what miracle tonic is on sale?

It’s no advertising pitch. It’s a statistic from a recent news article, reporting that 59 percent of doctors in this country now favor legislation to implement a national health insurance plan. Only 32 percent are opposed.

That’s a significant change from the last time this question was asked, in 2002. Back then, the vote was 49 percent in favor and 40 percent opposed.

The article quotes Dr. Ronald Ackermann, who helped conduct the survey: “Across the board, more physicians feel that our fragmented and for-profit insurance system is obstructing good patient care, and a majority now support national insurance as the remedy.”

More and more of America’s doctors are witnessing the human wreckage of our broken health-care funding system. When insurance companies incessantly fight their policyholders over the fine print in their policies, and everyone wastes millions on unnecessary paperwork, there eventually comes to be a cost. It’s a cost not only in squandered dollars, but also in lost efficiency. The more medical professionals are preoccupied with insurance red tape, the less time they have for treating their patients. This translates into a heavy cost in terms of our nation’s health – which is why, I think, so many doctors have changed their position.

Vance Esler is an oncologist and blogger. In his April 1st post – illustrated with a picture of a white flag – he interprets the survey results as a surrender on the part of weary doctors, who just want to hang up on the unending phone calls with insurance companies’ managed-care officials and get back to doing what they feel called to do: care for their patients. In earlier posts on the subject, Vance has expressed skepticism that national health insurance will be good for the patients – although he sees it as inevitable. He’s especially skeptical about Medicare – should that end up being the form the national program will eventually take:

“I have been working with Medicare for 30 years. I can tell you that there is no fighting because there is no negotiation. The government's attitude is ‘take it or leave it.’ So we physicians will take the cut in pay, take more time off, and probably be a whole lot happier.

But as one who is at the age where I may become a health care consumer, I'm not so sure I will like it – for the same reason: There is no negotiation.”

That does sound ominous.

Is this a common complaint of doctors in the British, French and Canadian national health-care systems, I wonder? Do they envy their American colleagues their ability to pull on their John Wayne Stetsons, swagger up to the insurance-company storekeeps, and demand what they want for their patients? I have a sense that other nations’ government health-care bureaucracies are less intractable than Medicare – or perhaps, simply better-funded. (They also tax their people at higher levels, which is where the better funding comes from.) Vance is right – these are issues that deserve careful attention.

I say of all political candidates seeking national office – whether the White House or Capitol Hill – if they have ears, let them hear. When even the doctors are starting to favor national health insurance, it’s clear the situation has deteriorated so far that something has to be done. There will be big rewards at the polls for any national leader with the guts to stand up to Big Insurance and do what’s best for ordinary citizens.