Friday, February 29, 2008

February 29, 2008 - Blogging Is Good for Your Health

At times I’ve wondered what keeps me going, as a blog author. Why did I start writing on such a grim subject as cancer in the first place, and why do I keep it up – long into my journey through this gray, featureless country of watching and waiting?

An article describing a new research study suggests why.

Implementing an Expressive Writing Study in a Cancer Clinic,” from the most recent issue of The Oncologist, describes the results of an experiment. Researchers asked a group of cancer patients to practice journaling while they were sitting in their doctors’ waiting rooms. After several months of sporadic scribbling, the writers answered questions about how the practice of journaling had affected their outlook.

The effect was overwhelmingly positive. Through linguistic analysis of the patients’ journal entries, investigators found that nearly all the writers used words that evoked a transformation of some sort. From the article:

“Many of the changes expressed in the writing were positive and related to feelings about family, spirituality, work, and the future. As one patient wrote, ‘Don’t get me wrong, cancer isn’t a gift, it just showed me what the gifts in my life are.’ Words and phrases from the writing texts appeared to illustrate a continuum of emotional transformation that may occur after a cancer diagnosis, beginning with the shock of diagnosis (e.g., mortality, shocked, uncertainty), followed by indications of acceptance (e.g., resigned, relaxed, readjust), expressions of gratitude (e.g., thankful, appreciate, grateful), and words related to transformation (e.g., more loving and giving, change in persona, new interests).” [Nancy P. Morgan, Kristi D. Graves, Elizabeth A. Poggi and Bruce D. Cheson, “Implementing an Expressive Writing Study in a Cancer Clinic,” The Oncologist, vol. 13, No. 2, February 2008, pp. 196-204.]

I know cancer has changed me. It changes just about everyone who experiences it. The change process begins on the day of diagnosis and continues long after. I have a sneaking feeling it never ends.

So, what does writing about cancer accomplish? Maybe it’s a sort of scapegoat effect. Leviticus 16:9-10 tells of the ancient Hebrew practice of cutting a goat out from the herd, liturgically loading all the sins of the people upon its back, then driving the benighted beast out of the camp. Hard luck for that particular goat, but it made the people feel better.

Maybe when I tap out a blog entry on my keyboard and click “Publish,” some of the fear and anxiety and anger of the cancer experience is sucked out of me and shot into cyberspace, hitching a ride on some runaway electrons. The sheer act of forging thoughts and feelings into words gives them a sort of objective reality. What had once been an ominous, swirling cloud takes on a certain shape. The shape it takes is not nearly so fearful as the imagining.

I don’t know whether or not the pen is mightier than the stethoscope, but the two can have a common purpose, it seems.

Saturday, February 23, 2008

February 23, 2008 - A Big Loss for Big Insurance

On November 11, 2007, I wrote about a California hairdresser named Patsy Bates, whose insurance company, Health Net, canceled her coverage in the middle of her chemotherapy treatments for breast cancer. The reason they cited was that, on her application for insurance, she had understated her weight by 35 pounds, and had failed to mention that she had once been screened for a possible heart condition, after having taken the diet pill, Fen-Phen.

Of course, the real – although unstated – reason was that she had been diagnosed with cancer. Some bean-counter in the insurance company offices, whose job it was to discover legal loopholes allowing the company to cancel unprofitable policies, had targeted Ms. Bates as a likely victim.

Ms. Bates, who suddenly found herself with over $129,000 in unpaid medical bills, was forced to discontinue her chemotherapy for several months, until she could find a charity that would help pay for her treatments.

The Los Angeles Times reported today that a judge has awarded Ms. Bates a $9 million settlement in the case. Evidence produced at the trial demonstrated that not only did Health Net pursue a policy of canceling customers’ policies on this sort of pretext, but they actually paid their employees bonuses to uncover such cases.

From the article:

“Calling Woodland Hills-based Health Net's actions ‘egregious,’ Judge Sam Cianchetti, a retired Los Angeles County Superior Court judge, ruled that the company broke state laws and acted in bad faith.

‘Health Net was primarily concerned with and considered its own financial interests and gave little, if any, consideration and concern for the interests of the insured,’ Cianchetti wrote in a 21-page ruling.”

Health Net CEO Jay Gellert did express remorse. “I felt bad about what happened to her,” he told the Times. “I feel bad about the whole situation.” He called an immediate halt to such cancellations and announced that Health Net “would be changing its coverage applications and retraining its sales force.”

It’s amazing how much repentance a $9 million legal judgment will produce.

Just for fun, I did a little search to find out what Mr. Gellert’s annual compensation is. According to the Forbes magazine website, it’s $7.03 million. (He also owns $28.3 million in company stock.) Do you suppose the Health Net Board of Directors will vote to dock his salary?

I’ll believe that when I see it.

This is the sort of situation that would never happen if we had a single-payer, national health system in this country. Nobody’s insurance coverage would be dropped to improve some corporation’s bottom line. Nobody’s. And we wouldn’t have health-insurance executives being paid multi-million dollar salaries based on their willingness to cancel people’s policies, either.

Thursday, February 21, 2008

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

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

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

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

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

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

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

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

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

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

February 20, 2008 - Still Stable

Not having heard anything about last Thursday’s CT scan results, today I put in a call to Dr. Lerner’s office. About an hour later, Denise from the office calls back with a message from the good doctor, who has examined the radiologist’s report. My cancer, he wants me to know, is “still stable.”

That’s six months, now, of my affected lymph nodes remaining unchanged in size. This indolent lymphoma of mine is lazing around, doing pretty much nothing (or, at least nothing the scanner can detect).

It’s pretty good news, about as good as I could hope for. (It would be nice if the cancer disappeared completely, but I know that’s not likely.)

I’ll see Dr. Lerner again on March 5th. Since there’s no change, I expect there will be no change in his recommended treatment, either: watch and wait some more. But, we’ll see...

Monday, February 18, 2008

February 18, 2008 - When Worlds Collide

This afternoon, I stop off at the gym where I’m a member, to work out on the exercise machines. As I step out of my car, I notice the car that’s parked in the place in front of mine.

It’s hard not to notice this set of wheels. It’s a Rolls Royce. A real beauty.

Then, I look down and notice something else about it. This chariot is sporting an “M.D.” license plate.

On impulse, I take out my trusty cell phone and snap a picture of it. It’s an image that seems emblematic of the problems and paradoxes of our health care system.

I don’t know anything about the doctor whose car this is, nor what sort of paycheck this person pulls down. Maybe he or she has inherited wealth. Maybe this doctor does a lot of pro bono work for needy patients – earning much, but also “giving back” much. Not knowing any facts other than the license plate, I can’t judge the individual.

I will say one thing, though: driving around in a Rolls Royce with “M.D.” plates is a pretty gutsy thing to do, given the present state of frustration with the health-care funding system in this country. Most people around here are used to seeing their doctors driving around in a Lexus or BMW. But a Rolls? That seems to take in-your-face ostentation to new heights (or depths, depending on your perspective).

Maybe this sight is affecting me this way because I just finished reading an article about a new study funded by the American Cancer Society. The researchers found that uninsured cancer patients and those on Medicare are significantly more likely to be diagnosed with late-stage disease than patients who have medical insurance. From the article:

“The widest disparities were noted in cancers that could be detected early through standard screening or assessment of symptoms, like breast cancer, lung cancer, colon cancer and melanoma. For each, uninsured patients were two to three times more likely to be diagnosed in Stage III or Stage IV rather than Stage I. Smaller disparities were found for non-Hodgkins lymphoma and cancers of the bladder, kidney, prostate, thyroid, uterus, ovary and pancreas.”

Did you catch those numbers? The uninsured are two to three times more likely to be diagnosed only after their cancer has reached an advanced stage. In the case of certain cancers, like colorectal cancers, the prognosis for such patients can be grim:

“The study cites previous research that shows patients receiving a diagnosis of colon cancer in Stage I have a five-year survival rate of 93 percent, compared with 44 percent at Stage III and 8 percent at Stage IV.”

How likely are uninsured people, in the absence of any symptoms, to go to a gastroenterologist on their 50th birthday for a routine colonoscopy? Not likely, I’d say, if they have to pay the full sticker price for the test. Yet, if there’s a malignancy silently growing in their digestive tract, a Stage I detection – when the likelihood of cure is 93% – is highly unlikely without a colonoscopy.

The implication of the study is clear: lack of medical insurance is one of the leading risk factors for life-threatening cancers.

I wonder how often doctors who drive Rolls Royces think about that sort of thing?

Sunday, February 17, 2008

February 14, 2008 - Hearts and CT Scans

Today I go to Ocean Medical Center for my 3-month CT scan. As I walk into the room where the scan will take place, I immediately notice that the large, fiberglass-covered donut of the scanner is covered with red paper hearts, stuck up there with pieces of surgical tape.

It’s Valentine’s Day, of course, and the radiology staff of the hospital is trying to make the place look festive. I give them an “A” for effort, even if the decorations look a bit haphazard.

It’s a reminder, to me, of what medicine is all about – or, at least, what it ought to be all about. Here’s a CT scanner, one of the highest of high-tech pieces of diagnostic equipment. Its purpose is to analyze the human body, breaking the complex reality that is a human life into constituent parts that can be expressed numerically. When I lie down on that sliding platform, and the whirring engine slides me slowly through the hole in the donut, the CT scanner will render my physical existence into images, that will tell my doctors what’s going on inside me. It’s a technological wonder.

Yet, as adept as the CT scanner is at depicting what I am, it’s absolutely blind to who I am. What are my thoughts, my hopes, my dreams, my fears? The scanner knows nothing of such things.

That’s where the paper hearts come in. They look incongruous, there, on the side of the scanner. But I’m glad to see them. They tell me the hospital staff cares about more than just numbers.

Wednesday, February 13, 2008

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.

Thursday, February 07, 2008

February 6, 2008 - Remember That You Are Dust

"Remember that you are dust, and to dust you shall return." These are the words I repeat over and over again this Ash Wednesday, as I do every year. I speak them as I smear a thumbful of ashes in a cross-shaped pattern on church members' foreheads, as they come up to me during the worship service.

The imposition of ashes is a curiously intimate act. It involves a brief moment of human touch, applied to a highly sensitive area, the face. Most of us aren’t eager to have others outside our immediate family touch us on the face. There are a few exceptions: doctors, barbers, or – for women – maybe a hairdresser or makeup artist. That’s about it: other than a minister or priest, on Ash Wednesday or in the less-common rite of anointing with oil.

We Presbyterians haven't been doing this ashes thing for very long – about 15 years or so, in this congregation. In years past, most Presbyterians have shrunk from the imposition of ashes, considering it – for no good theological reason – "too Catholic." But those days are pretty much behind us. Even though we make a big deal about it being voluntary, nearly everyone comes forward, now, to receive them.

For me, the most emotionally powerful encounters involving the ashes are with the very old and the very young. When an elderly person comes up to me, and I say, "to dust you shall return," I figure both of us know that return could happen any time now. It's not an especially sad or mournful thing. It's just the way it is, the way of the world.

It's even more poignant when the person is sick – like the advanced cancer patient who came in to see me this morning, to talk about her funeral plans. Her doctor says she’s got a few months to live. She's here at the Ash Wednesday service this evening. I wonder what the ashes mean to her, this year of all years?

When young children come up – ushered forward by a parent, or perhaps even held in a parent's arms – it's something else altogether. It seems deeply wrong, almost an obscenity, to smudge ashes on such a little forehead and say "remember that you are dust." It feels, somehow, like I'm marking these youngsters for death. A powerful symbol, these ashes.

In a death-denying and sin-denying culture, to smear ashes on a person's forehead is a deeply counter-cultural act. The ashes are a reminder both of our mortality and of our tendency to sin. They're a reminder, in other words, of our creatureliness. It never ceases to amaze me how many people come up to me and ask for that reminder, then tell me afterwards how meaningful it feels to them.

This afternoon, I was in Dr. Lerner's office for my monthly port flush. Unbuttoning my shirt, I let the nurse probe around by my collarbone with a surgical-gloved finger, until she located the hard little button under my skin. Then, after smearing the area liberally with antiseptic, with a nursely combination of gentleness and firmness she swiftly plunged a needle through my skin and into the port.

I've had this done so many times, now, it's no longer troubling to me. I know the pinprick of pain will last a brief moment, and no longer.

This, too, is a reminder of my mortality – a reminder of the cancer I can't feel, but that I know is still there, somewhere within me. "Remember that you are dust, and to dust you shall return."

Tuesday, February 05, 2008

February 5, 2008 - Mythbusting Canadian Health Care

“Mythbusting Canadian Health Care” is the title of an article I just read online. Granted, it’s on a website that leans decidedly to the left – so, any of you readers who blanch at the “L” word (that’s “liberal”) may not be inclined to click on the link and actually read it. But, I think you should.

It’s worth a read, because – in a cool, calm and reasonable fashion – its author, Sara Robinson, details what the real experience of Canadians is with their single-payer health system. Sara is an American citizen living in Canada, and participates in the Canadian health care system. So, she has a firsthand perspective from both sides of the border.

No, Canada’s system is not “socialized medicine” (it’s a universal, single-payer system: “Medicare for all,” some have called it). No, the Canadian government doesn’t choose people’s doctors for them. No, the quality of care doesn’t suffer (although there are some longer wait times for a few high-tech tests, like MRIs). No, Canadian doctors aren’t government employees. Yes, Canadian doctors make a bit less money than their American counterparts, but they also don’t have to spend hours on the phone every week arguing with patients’ insurance companies, and they don’t have to employ so many clerical people in their offices.

Robinson makes what I think is a very convincing case. But then, if you’ve been reading my blog for long, you know I’m feeling pretty frustrated with the creaking, ungainly machine that is our American health-care system – a system that deprives far too many people of medical care they need and can’t afford.

Read it, though, and make up your own mind.

Friday, February 01, 2008

February 1, 2008 - The Cells that Would Not Die

Here’s a helpful video from Australia, addressing frequently asked questions about lymphoma. It’s about 8 minutes long:

One notable fact shared in this video is that there’s been an “alarming” increase in incidences of lymphoma over the last 20 years. No one knows why. I suppose I’m a part of that trend (better not to be trendy about some things, I always say).

I also found it interesting how the Australian expert describes the mechanism behind follicular lymphoma as the failure of lymphocytes (white blood cells) to die. We generally look on prolonged life as a good thing. Yet, when it comes to most of the cells in our bodies, it’s certainly not. Our bodies in fact depend on regular cell death in order to stay healthy. Most of the cells in our bodies die eventually – long before we, as a larger organism, die ourselves – and are replaced by newer cells. Only our brain cells last a lifetime (at least those that are not killed off early by drug or alcohol abuse, or by disease).

This means we’re literally, in a biological sense, not the same people we were when we were born. Little by little, the cells of our bodies have been hauled out to the biochemical scrap heap and replaced with newer models. This has happened gradually, imperceptibly, in a carefully phased and controlled process called apoptosis, that avoids the catastrophe of too many cells dying at once.

Here’s something science writer Lewis Thomas has written about that process, in his bestseller, The Lives of a Cell:

“Everything in the world dies, but we only know about it as a kind of abstraction. If you stand in a meadow, at the edge of a hillside, and look around carefully, almost everything you can catch sight of is in the process of dying, and most things will be dead long before you are. If it were not for the constant renewal and replacement going on before your eyes, the whole place would turn to stone and sand under your feet…. It is a natural marvel. All of the life of the earth dies, all of the time, in the same volume as the new life that dazzles us each morning, each spring. All we see of this is the odd stump, the fly struggling on the porch floor of the summer house in October, the fragment on the highway.”

Jonathan Swift’s classic satirical novel, Gulliver’s Travels, is a travelogue that takes in more places than simply Lilliput, the land of the little people (which is typically the only episode of the story to appear in movie versions). One of the lesser-known lands Gulliver visits, after Lilliput, is the mythical land of Balnibarbi. In this country, it sometimes happens that a person is born who lives forever. Such people are instantly recognizable, even as infants, by a red birthmark on their foreheads. The citizens of that land call these people "struldburgs."

Such individuals are not considered blessed. In fact, to be born a struldburg is considered a terrible misfortune. It’s true that these people never die, but they also continue to age at a normal rate. Eventually, everyone they love dies, and then they lose their sight, their hearing and even their minds. These dried-out husks of human beings end up aimlessly wandering the countryside, in a state of never-ending misery. Theirs is, literally, a fate worse than death.

Struldburgs are like certain kinds of cancer cells, including cancerous B-lymphocytes. Such cells refuse to die, and by their continued life they threaten to bring down the larger society in which they live.

Eternal life is the prize at the end of the Christian life. Cancer teaches us it’s better to wait on that, until the right time. When some of our cells jump the gun and try to attain eternal life in the here and now, problems ensue.