June 29, 2008 - Reflections of a Pancreatic Cancer Survivor

The other day I came across an article written by the Rev. Bill Forbes, a fellow Presbyterian minister. Bill’s a member of a highly exclusive club: pancreatic cancer survivors.

Bill used to be pastor of a large church in northern New Jersey. Shortly after leaving that position to become a vice-president of our denomination’s Board of Pensions, he was diagnosed with pancreatic cancer, and given just months to live. Now, more than two years later, he’s still with us. So far, he’s beating the odds.

The article Bill wrote appears in The Presbyterian Outlook – a small, independent magazine not widely known outside Presbyterian circles. His thoughts on survivorship are wise, and deserve to be more widely known.

Here are some things he says pancreatic cancer has taught him.

“Each and every day of life is a gift.”

“My effort to live a life and ministry of encouragement shapes my life today as never before.... Pancreatic cancer has assisted me, indeed it has endowed me, with a mandate to re-order my priorities. I don’t ‘sweat the small stuff’ nearly as much as I used to!”

“Prayer shapes and guides my life more than it did pre-diagnosis.”

When people learn that a friend has cancer, they often feel at a loss for words. Here’s what Bill suggests they say:

“When you know of someone who faces challenges – a serious illness, a family tragedy, a professional crisis, or a personal conundrum, don’t avoid them! Avoidance is tantamount to isolation. When someone faces the direst need, there is a tendency to feel forgotten. Questions such as ‘Why hasn’t your hair fallen out?’ or ‘What caused your situation?’ or ‘What kind of treatment will you have next?’ or ‘What is your prognosis?’ or ‘How are you handling the loss of your job, your spouse, your child, your... ?’ translates into ‘How does it feel to be without hope?’ And that’s not what those who suffer need.

Each of us has suffered or will suffer at some time in our lives. The Book of Job was a preview of what can happen to the most faithful and to the least faithful. Yet, the greatest gift we can offer to one another is encouragement – encouragement through spoken or written word, through deeds however small or gracious, through intercessory prayer and through the kindness of recognition: ‘I know this is a difficult time for you and I am holding you in daily prayer.’ God’s gift of life is truly amazing!”

Just one more example of how cancer changes a person.

June 24, 2008 - Far from Paperless

An editorial in today’s New York Times highlights a sleeper sort of problem with big implications for anyone who goes to see a doctor: American medicine’s stubborn refusal to embrace computer technology when it comes to medical records.

The numbers, from a recent survey conducted by researchers at Massachusetts General Hospital, are eye-opening: “a paltry 4 percent of the doctors had a ‘fully functional’ electronic records system that would allow them to view laboratory data, order prescriptions and help them make clinical decisions, while another 13 percent had more basic systems.”

“This,” the editorial continues, “is a startling contrast with other industrialized nations. A 2006 survey by the Commonwealth Fund found that nearly all doctors in the Netherlands and the vast majority in Australia, New Zealand and Britain were using electronic medical records. Denmark has a comprehensive health information exchange that allows doctors to see all medical care and testing provided to a patient. They can even see whether a patient has filled a prescription, which is information that most American doctors lack.”

When I read something like this, I think of the several-inches-thick manila file folder with my name on it at Dr. Lerner’s office. Everything else in that office is shiny and high-tech. Sophisticated machines analyze blood samples in seconds. Medications are stored in a smart refrigerator, to which nurses can gain access only by keying in a security code and a patient I.D. number. Even patient appointments are managed by a computer scheduling program.

But patient medical records? That otherwise high-tech office is still in the era of dog-eared, photocopied pieces of paper stuffed into bulging files.

This is in stark contrast to the Memorial Sloan-Kettering Cancer Center, where I go for my second opinions. Most of that hospital’s record-keeping is paperless. When I checked in for my first outpatient visit several years ago, there wasn’t even any insurance paperwork to sign: they had me sign with an electronic pen, on one of those machines they use in department stores for credit-card signatures.

There’s a huge cost to maintaining and archiving paper records. There’s also a significant potential for errors, especially when it comes to prescriptions. Jokes about doctors’ poor handwriting aside, there are computer programs that can flag medication interactions and simple scribal errors, as a back-up check on overworked doctors and pharmacists.

Why is it that American doctors have been so slow to embrace this technology, when they’re on the cutting edge of so many other innovations? The Times editorial writers have a theory: “The chief reasons American doctors cite for not moving into the electronic age is the high cost of buying and maintaining the equipment, the inability to find a system that met their needs and a concern that a system would quickly become obsolete. Other industrialized nations have moved faster because of strong national leadership in setting standards and helping to finance adoption”

To these reasons I would add another one: fear of litigation. With medical-malpractice lawyers potentially tracking their every move, doctors are fearful of letting go of every little piece of the paper trail.

It all boils down to the inefficiencies of America’s patchwork quilt of small, independent medical contractors, living in fear of predatory attorneys. Countries with a national health system have a powerful incentive for adopting record-keeping standards and developing computer systems (and backups) that work. They also typically have some limits in place when it comes to medical-malpractice lawsuits.

It’s the patients who pay the price of these inefficiencies, of course – both in financial terms, and in terms of human error.

Time for a change?

June 20, 2008 - At the General Assembly

I’m in California, attending the Presby- terian Church (U.S.A.) General Assembly in San Jose, and staying with my brother Dave at his loft apartment near Berkeley.

The General Assembly is a great place for reunions with friends from around the church. In the exhibit area, I encounter Barb, a friend of ours from the days when I served as assistant dean and director of admissions at the University of Dubuque Theological Seminary in Iowa. I hadn’t seen nor talked to Barb for four years – since the last General Assembly I attended, actually.

Barb hasn’t heard of my cancer history, so I fill her in. She updates me on a health crisis she faced, as well – about the same time as I was undergoing chemo, it turns out. In her case, it was a kidney infection that turned into a blood infection that nearly killed her. It was touch and go for a while.

Barb is a spiritual director, and interested in healing ministries. She’s a leader in the Order of St. Luke, an ecumenical community of Christians who practice healing prayer. She tells me in some detail how, as she was lying in a hospital bed, drifting in and out of consciousness, she had a vision of descending into a sort of dark cavern, that she was sure would lead to her death. Then, she felt the power of countless prayers of believers who were praying for her. Those prayers were like strong arms grabbing hold of her and pulling her back up into the light.

She wasn’t afraid to die. She felt oddly indifferent to that possibility. I tell her I had something of the same feeling around the time of my initial diagnosis, when the thought hit me that my life could be significantly shorter. I felt sadness over experiences I would have missed, but as for death itself, “It is what it is, and if that’s what it is, so be it,” I tell her.

Barb acknowledges she felt much the same.

Barb was in her late 70s at the time she was going through this. I was 49. Yet, I don’t think age has a whole lot to do with it. Our experiences were similar.

We look at one another, slowly nodding our heads. We’ve been to the same far country, and the journey has changed us, in ways we’re still coming to understand.

And some think the General Assembly is only about ecclesiastical politics...

June 17, 2008 - A Great Survivor?

Here’s Amy Gross, a social worker from Boston’s Dana-Farber Cancer Institute, speaking on the subject of cancer survivorship. It’s a little on the long side: just over 10 minutes.

She touches on a couple significant topics that make an impression on me. First, Amy points out that there’s no road map to life as a survivor. This is in sharp contrast to the time of treatment, which for most of us was governed by detailed medical protocols. “Now what?” is the question many of us ask, once the last chemo or radiation treatment is ended – and even months and years later.

Second, she speaks of a sort of performance pressure some feel to be “great survivors” – after the example of certain celebrities, who have become poster children for survivorship.

What makes a great survivor? I think it’s being true to who we are, as people. No one of us will do it the same as anybody else.

Anyway, here’s the video:

June 14, 2008 - Atlantic City Rules

I’m thinking, today, about something that happened to Claire and me last weekend. We were attending a fund-raiser for a local non-profit organization that aids the mentally ill. It was, rather unusually for us, a “Casino Night.”

We’d been given free tickets, as longtime supporters of the organization. So had Robin, our church’s associate pastor, who joined us for the first part of the evening. Turns out, none of our local ministerial colleagues had been willing to show their faces at an event featuring gambling. The organizers seemed glad the Presbyterians didn’t have such scruples.

We’re no supporters of gambling. We went because we wanted to publicly support the organization’s work. We felt completely out of place, but still found it fascinating to watch the crowds of well-dressed people milling around the poker, blackjack, roulette and craps tables. Unlike us, most of them seemed to know what they were doing.

You don’t win money at this kind of event. You buy gaming chips with real money (telling yourself it’s a donation to the mental-health organization), and if you have any left over at the end of the evening, you cash them in for numbered tags you then drop into boxes. Each box corresponds to a prize or a gift basket. If your number is drawn, you walk home with something nice.

The printed program declared, in bold letters, “ATLANTIC CITY RULES.” That’s as opposed to Las Vegas rules, I suppose (whatever those may be). The words have a double meaning: in that place, at that time, Atlantic City did indeed rule. Atlantic City ruled for all those well-dressed people slyly circling the gaming tables, sizing up the risks, trying to decide where on the green velvet to place their little stacks of chips.

It didn’t rule for us. We live just an hour’s drive from the East Coast’s gambling Mecca, but I can count on one hand the number of times I’ve visited there.

Anyway, the dinner was delicious and we had a generally pleasant time walking around and talking to people we know. Then, towards the end of the evening, it was time for the door prizes. Someone was standing up front with a microphone, calling out the numbers. Abruptly, a chair shot backwards – right in front of the emcee – and we saw a woman fall to the floor.

She had collapsed, for some unexplained reason. The whole room had seen it. The cheery door-prize announcers stopped their patter in mid-sentence and looked on, dumbfounded.

“Someone call the first aid!” shouted someone from the crowd. A dozen hands reached into pockets or purses, and emerged holding cell phones (thank God for cell phones).

“Is there a doctor here?” cried someone else. A tall, lanky older man in a business suit stepped forward and knelt down beside the stricken woman.

None of us could see what was happening. Our view was blocked by the tables and chairs, and by the several people kneeling down, assisting the doctor.

Awkward silence. Time seemed suspended.

“Is she alive?”

“I can’t tell. I can’t see a thing.”

More awkward silence.

“What’s taking them so long?”

Reflecting on this rather surreal experience later, I’m reminded of the oft-quoted remark of Susan Sontag, from her cancer memoir, Illness As Metaphor:

“Illness is the night-side of night, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”

This unfortunate turn of events had abruptly thrust us all into a sort of no-man’s-land: the seedy customs-and-immigration holding area, with dirty linoleum and buzzing fluorescent lights, that marks the border between Sontag’s two kingdoms.

Moments before, everything had been normal: cheerful people doing what passes for fun in our materialistic culture. As soon as that poor woman’s body hit the floor, everything changed. Big time.

Finally, a police officer strode in, pulling behind him an oxygen tank on wheels. A few long minutes later, a couple of first aiders wheeled in a gurney. They lifted the woman onto it, and cranked it up high. At last, we could see. The woman’s eyes were open. She was breathing. Relief.

The crowd looked on in silence as the solemn procession of medical acolytes departed the room. Moments later, the festivities resumed as though nothing had happened. The people with the microphone started up the door-prize drawing where they’d off. They said not a word about the events we’d all just lived through.

If it had been a worship service, we’d have known what to do. We’d have offered a public prayer, asking the Lord to bless our stricken neighbor with healing and to guide those seeking to help her. Yet, this was a thoroughly secular setting, in an increasingly unchurched culture. Atlantic City rules contain no codicil that speaks to such circumstances. You just utter a little sigh of sympathy, then go back to gambling.

The portal opening into the kingdom of the sick had been slammed shut. The memory, and the uneasiness, lingers on.

June 6, 2008 – Game Face

A June 1 article by Jan Hoffman in the New York Times (“When Thumbs Up Is No Comfort”) comments on the recent buzz concerning celebrity cancer patients Patrick Swayze (pancreatic cancer) and Ted Kennedy (brain cancer).

Swayze “made a pointedly public appearance at a Los Angeles Lakers game, looking strong-jawed and bright-eyed. He released a statement about his lively schedule and good response to therapy.”

Kennedy “left Massachusetts General Hospital... flashing crowds a thumbs up, competed in a sailing race. International headlines cheered, ‘Fight, Ted, Fight!’”

Celebrities with cancer, Hoffman goes on to observe, seem to feel they have to put on a brave, public face. The toothy smile and the thumbs-up gesture are obligatory. Hoffman quotes Barron H. Lerner, the physician author of When Illness Goes Public: Celebrity Patients and How We Look at Medicine: “If Ted Kennedy wanted to stick up his middle finger, that would be the more appropriate finger, but he’s doing what he is supposed to.”

Our celebrity-besotted culture looks to movie stars, athletes, politicians and others in the public eye to serve as iconic examples of steadfast, stoic endurance – when, really, these people are no better equipped for such a role than the rest of us. I’m sure Swayze and Kennedy had their private moments of anger and despair, before composing themselves and putting on their game face for the cameras.

To a certain extent, lots of us cancer survivors feel an obligation to put on our game face and keep it on. We feel that way whenever someone looks us in the eye and earnestly asks, “And how ARE you doing?” Not long after our first remission, or after we’ve reached some plateau in our treatment, we find we’ve become adept at delivering short, cheery but not very informative answers. Such an answer is easier to supply than the lengthy, more accurate summary of a complex medical condition.

When folks ask me that question, they’re plainly hoping for a smile and a thumbs-up, little more. In the interests of accuracy, I really ought to say something like this: “Well, I’m no longer in remission, but I’m experiencing no symptoms and my only treatment at the present time is ‘watch and wait.’ I’m feeling a bit frustrated the doctors can’t do more to cure me, but I’m doing my best to stick with the program. I’m finding it a bit hard to get on with my life while the cancer monkey’s still clinging resolutely to my back, but then I remind myself there are lots of promising, new treatments out there for my type of non-Hodgkin lymphoma – some available for immediate use and others soon to emerge from the research pipeline. This gives me hope, but even so, not a day goes by that I don’t say to myself, ‘I have cancer,’ and feel twinges of anger, anxiety and sorrow.”

I won’t dump that torrent of words on the casual inquirer, of course. It seems more important, both to my questioner and myself, that I keep up the game face.

Is that dishonest? I don’t think so. It’s just a survival technique.

Hoffman also touches on the subject of the military metaphor for cancer (something I’ve addressed in earlier blog entries). Citing Dr. Gary M. Reisfield, a palliative care specialist at the University of Florida, Jacksonville, Hoffman says: “Over the last 40 years, war has become the most common metaphor, with patients girding themselves against the enemy, doctors as generals, medicines as weapons. When the news broke about Senator Kennedy, he was ubiquitously described as a fighter. While the metaphor may be apt for some, said Dr. Reisfield, who has written about cancer metaphors, it may be a poor choice for others.

Metaphors don’t just describe reality, they create reality,” he said. “You think you have to fight this war, and people expect you to fight.” But many patients must balance arduous, often ineffective therapy with quality-of-life issues. The war metaphor, he said, places them in retreat, or as losing a battle, when, in fact, they may have made peace with their decisions.”

Ask me no questions, I’ll give you no game face.

June 4, 2008 - He Married for Insurance

Here’s a news story that highlights, in a very personal way, the dilemma of those who have cancer but no health insurance:



The American Cancer Society’s statistic, highlighted in the story, bears repeating: cancer patients without private insurance are 60% more likely to die within the 5 years after their diagnosis.

June 2, 2008 - Continuing Care

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

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

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

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

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

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

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

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