August 3, 2010 - Clinging to the Tail of Possibility

On vacation in the Adirondacks, I read a remarkable article from the August 2 New Yorker magazine. I was tipped to the article by my brother, Jim – though I later learned from Claire that members of her hospice team have been passing it amongst themselves, causing lively discussion in their weekly staff meeting.

I think “Letting Go: What should medicine do when it can’t save your life,” by Atul Gawande, may set off at least as much debate as his June 1, 2009 article, “The Cost Conundrum: What a Texas town can teach us about health care.” (which I discussed in a July 20, 2009 blog entry, “Where Not to Get Sick.”)

Gawande is a general surgeon who practices at Boston’s Brigham and Women’s Hospital, and who teaches at Harvard Medical School. He’s operated on a lot of cancer patients. Some benefitted mightily from his expertise, and others’ last days would likely have been more tolerable without the invasive procedures. Yet, hindsight is always 20/02, and ahead of time it’s always a tough call.

It’s his physician’s perspective that leads Dr. Gawande to question the lack of agreed-upon procedures for end-of-life decision-making in America. For a country with some of the most advanced medical care in the world, our practices in this area are remarkably haphazard.

Gawande points out that the financial costs of successful cancer treatment can typically be graphed as a bell curve: there’s a steep climb from the time of diagnosis to a sort of plateau, as very expensive scans and treatments are deployed. Then, there’s a drop-off in costs as the patient recovers. In the case of patients whose treatment is unsuccessful, the frequent result is half a bell curve. We throw some very big money at solving problems that are – statistically speaking – unlikely to be solved, sending the line of the graph soaring upwards. Because it’s a human life at stake, doctors typically follow the lead of patients and their families, ordering such last-ditch treatments if that’s what they want. In many such cases, the patient dies anyway, often after many days, or even weeks, of intensive care. If the ICU stay is long, those days can end up costing as much as – sometimes even more than – the cancer treatment itself.

These are agonizingly difficult decisions, some of the toughest in medicine. When to pursue extraordinary, experimental treatment? When to throw in the towel and admit that maintaining a reasonable quality of life for the patient whose health is in a tailspin is more important than the increasingly quixotic search for a cure?

Gawande remarks that nearly all categories of dying patients and their families – with one exception – are ill-prepared to wrestle with such complex, emotionally fraught decisions. When, as too often happens, everyone’s energies are single-mindedly fixed on the search for a cure, doctors fail to raise the what-if question of death at all. It seems to them premature. Yet, when that likelihood suddenly looms large, and quick decisions have to be made about such interventions as feeding tubes and ventilators, patients and families scramble to wrap their minds around the new state of affairs. Unable to achieve unanimity, a great many families fall back to the default position, which is to press on relentlessly in search of a cure – even though the doctors may know, full well, that chances of extending such patients’ lives by more than a few weeks are slim.

Granted – as Claire reminds me, based on her hospice ministry experience – there are some cultural and ethnic traditions that inform this process. Orthodox Jews, for example, typically make decisions within a moral framework that nearly always opts for treatment, no matter what the chances of success. African-Americans and Hispanics, bearing cultural memories of parents and grandparents to whom the system too often denied advanced care, are more likely than others to press for it, even against medical advice.

Referring to science writer Stephen Jay Gould’s oft-quoted 1985 essay, “The Median Isn’t the Message” – in which Gould tells the story of how, upon learning he had mesothelioma, he decided to take his place among the tiny percentage of patients who survive, and did – Gawande speaks of the “tail” of the statistical curve. That’s the narrow portion that stretches a good distance into the future, and includes the fortunate few patients who manage to beat the odds and survive a deadly cancer. It’s good to remember, when faced with such stories, that the statistical median is just that – a median. Always, there are some who do better than clinical expectations, others worse. An awful lot of people, though, are trying to ride the tail of statistical probability – far more than will end up actually being on it. Gawande writes:

“I think of Gould and his essay every time I have a patient with a terminal illness. There is almost always a long tail of possibility, however thin. What’s wrong with looking for it? Nothing, it seems to me, unless it means we have failed to prepare for the outcome that’s vastly more probable. The problem is that we’ve built our medical system and our culture around the long tail. We’ve created a multimillion-dollar edifice for dispensing the medical equivalent of lottery tickets – and have only the rudiments of a system to prepare patients for the near-certainty that those tickets will not win. Hope is not a plan, but hope is our plan.”

I mentioned above that Gawande identifies one category of patients and their families who are better prepared for end-of-life decision-making. He’s talking about those who have received hospice services. Alone among the specialties of modern medicine, the hospice movement is not afraid to face death head-on and talk about it with patients – well before the anxious moment in the little family waiting room just off the ICU, when a doctor (or, just as likely, a critical-care nurse) sits down on the vinyl-covered furniture with the family and informs them a decision needs to be made about discontinuing life-support.

Patients who have signed on for hospice care have already decided they’re not going to cling to the slim tail of possibility any longer. They’re going to strive for the best quality of life they can construct in the here-and-now, placing their hope somewhere other than joining the tiny percentage who defy medical expectations.

I can’t begin to recall the number of grieving family members I’ve spoken with who told me they wished their loved one had gone on hospice earlier. Claire confirms for me, from her experience working with bereaved family members, that this is a nearly-universal comment. Curiously, the vast majority of hospice patients live no longer than a few days. That’s not because hospice care is somehow bad for them – quite the opposite. It’s because, by the time most patients make this decision, they’re already so far gone that hospice functions as little more than a transfer-station between the hospital and the funeral home.

It’s not meant to be that way. The hospice ideal is for weeks or even months of active, but mostly palliative, treatment. The hope is that the hospice experience will provide a gracious space for patients and their families to work through the full range of issues – medical, emotional, spiritual – they need to deal with at the end of life. Surprising as it may seem, there are even some patients who go on hospice for a time, then go off it – their improvement has been such that the “six months or less to live” criterion of hospice admission no longer applies to them.

So, signing up for hospice care is not giving up, as some fear. Far from it.

The key to a higher quality of life for the dying, Gawande points out, is communication. One of the things hospice team members do exceptionally well is to encourage patients and their families to share their thoughts and feelings about dying, then to listen attentively and respectfully to what they say. Next, they help them think through what goals they have for the rest of their lives, and do whatever they can to help them attain them. “You don’t ask, ‘What do you want when you are dying?’” explains one expert. “You ask, ‘If time becomes short, what is most important to you?’” Gawande observes:

“People die only once. They have no experience to draw upon. They need doctors and nurses who are willing to have the hard discussions and to say what they have seen, who will help people to prepare for what is to come – and to escape a warehoused oblivion that few really want.”

The asking of such questions was meant to be a central part of the new health-care legislation recently passed by Congress, but politics blocked it. The Tea Party mob ignorantly slapped the label “death panels”on the funding for these vital conversations, then pressured Congressional leaders to excise it from the bill – which they did, so as not to lose the bigger battle. This is a terrible miscarriage of justice for the dying: the sacrifice of a proven care approach that offered real promise for enhanced quality of life.

When the only goal worth talking about is to beat the disease, Gawande concludes – no matter what that may mean in terms of unproven, experimental treatments – the statistical outcome in nearly every case is going to be disastrous. Which general would you rather have leading the troops into battle? George Armstrong Custer or Robert E. Lee?

“Death is the enemy. But the enemy has superior forces. Eventually, it wins. And, in a war that you cannot win, you don’t want a general who fights to the point of total annihilation. You don’t want Custer. You want Robert E. Lee, someone who knew how to fight for territory when he could and how to surrender when you couldn’t, someone who understood that the damage is greatest if all you do is fight to the bitter end.”

This article is a good read, for anyone whose life has been touched by cancer – either their own or that of a loved one.

September 9, 2008 - Cancer Misinformation

OK, here’s a curious news item. Someone’s done a study of misinformation about cancer, and how spurious beliefs vary according to whether a person lives in the industrialized or the developing world:

“Researchers interviewed 29,925 people in 29 countries last year to compare data on perceptions about cancer risk factors among high-, middle-, and low-income countries.

Among their findings was the fact that people in high-income countries were least likely to believe that drinking alcohol increases the risk of cancer, when, in fact, cancer risk rises as alcohol intake increases. Specifically, 42 percent of the people in the high-income countries said alcohol does not increase the risk, compared with 26 percent of those in middle-income countries and 15 percent of those in low-income countries.”

So, first-world people insist on believing, despite the evidence, that they can tipple risk-free. They also choose to believe – again, contrary to evidence – that eating a diet high in fruits and vegetables will do more to lower their cancer risk than abstaining from alcohol. It won’t. Alcohol is a far bigger risk.

First-world people also believe exposure to air pollution is more carcinogenic than drinking. It’s not.

People in middle- and low-income countries tend to take a Que Sera, Sera attitude towards cancer, believing not much can be done to treat it. Folks in wealthier countries – evidently more used to seeing baldheaded cancer survivors walking around – believe that aggressive therapy can make a difference.

Generally speaking, “people in all countries were more ready to accept that things they could not control (e.g., air pollution) were risk factors than things they could control (e.g., overweight, which is an established cancer risk factor).”

I’m still processing these observations. I don’t quite know what to make of them. Of course, it’s humbling to be reminded, once again, of how cancer treatment is pretty much the preserve of the wealthy (with “wealthy” defined according to a global standard, to include pretty much everyone in Europe and North America). In many parts of the two-thirds world, a cancer diagnosis is still pretty much a death sentence.

Yet, from Basel to Bangladesh, there’s still a lot of unreasoning fear out there when it comes to cancer. It’s a better fit for our frame of reference, somehow, to see cancer as an unstoppable force that descends with devastating randomness (caused by something like air pollution that few of us can do anything to prevent), rather than as something that can be a consequence of our own lifestyle choices.

Cancer is a great drive-in movie screen, on which we tend to project our desires as well as our fears. No wonder it can be such a hard subject to talk about.

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?

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?

October 31, 2007 - Are We Scared Yet?

It’s Halloween, the night when costumed little ones take the long and lonely walk up to houses of people they barely know, ring the doorbell and hope for the best. I can still remember the butterflies in the stomach, back when I was numbered in that company: the heady combination of exhilaration and fear.

Today, my role is limited to carving the jack-o-lantern. I try not to make him look too scary. He’s a sort of open-for-business sign, an invitation to the little ghosts and witches and ballerinas and football players to step up and dig some “fun-sized” chocolate bars out of the black-plastic witches’ cauldron.

Claire and I miss the days when our own kids were young enough to go trick-or-treating. Fewer and fewer kids stop at our door each year, it seems – despite our glowing pumpkin beacon. It has more to do with the fact that there are houses on only one side of our street, than anything else. These kids get smarter every year. They know the streets where they can maximize their take are those that have houses on both sides, and close together.

Maybe it’s because it’s Halloween, but today’s New York Times – responding to the recent anxieties about antibiotic-resistant bacteria – has a little article, called "How Scared Should We Be?", on the relative risks of dying from various things. Some of these comparisons are rather bizarre: such as the one that says you’re more likely to die from being bonked on the head by a falling coconut (150 cases a year, around the world) than being killed by a shark (62 cases in the United States).

Here’s a portion of a chart indicating various causes of death:

Heart disease: 652,486 deaths annually (1 in 5 risk)
Cancer: 553,888 deaths annually (1 in 7 risk)
Stroke: 150,074 deaths annually (1 in 24 risk)
Hospital infections: 99,000 deaths annually (1 in 38 risk)
Flu: 59,664 deaths annually (1 in 63 risk)
Car accidents: 44,757 deaths annually (1 in 84 risk)

Down at the lower levels, risks include:

Lightning: 47 deaths annually (1 in 79,746 risk)
Train crash: 24 deaths annually (1 in 156,169 risk)
Fireworks: 11 deaths annually (1 in 340,733 risk)

Am I scared, now, of dying of cancer? Not as much as I used to be. Part of that is because my prognosis is actually better, now, than it was, pre-treatment. But that’s not the whole story. When you live with this kind of threat for a while (and it’s now been nearly 2 years since my diagnosis), you do get used to it. It becomes part of the background noise.

Yeah, chances are pretty good that cancer’s what I’m going to die from, in the end. But, when will that end be? Hard to say. Indolent lymphoma takes its lazy old time, and typically lets itself get beaten back down into is hole numerous times, by a succession of treatments, before rearing up and doing its worst.

Bottom line is, I don’t have time to feel scared. I have things to do, people to see. Odds are, my disease’s progression is more likely to be spaced out over years (or, in the best case, decades) rather than months. So, I can put the fear off a while longer.

Happy Halloween!

August 16, 2007 - Take a Cancer Quiz

OK, here's a little brain-teaser for the dog days of August. A recent article tells of a survey commissioned by the American Cancer Society, that sought to capture Americans' viewpoints about cancer. Here are a few questions from the survey. They're True/False questions, the easiest kind.

See how you do...

1. The risk of dying of cancer is increasing. TRUE or FALSE?

2. Living in a polluted city is a greater risk for lung cancer than smoking a pack of cigarettes a day. TRUE or FALSE?

3. Electronic devices, like cell phones, can cause cancer. TRUE or FALSE?

4. Personal hygiene products, like shampoo, deodorant, and antiperspirants, can cause cancer. TRUE or FALSE?

5. Underwire bras can cause breast cancer. TRUE or FALSE?

Ready for the answers?

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Well, the correct answer to all those questions is: "FALSE." Here are the percentages of Americans who agreed with each of the statements:

1. The risk of dying of cancer in the U.S. is increasing – 67.7%.

2. Smog is riskier than cigarette smoke – 38.7%.

3. Cell phones cause cancer – 29.7%.

4. Personal hygiene products cause cancer – 14.7%

5. Underwire bras cause breast cancer – 6.2%.

(Source: "Many Americans Believe Unsubstantiated Claims About Cancer, Survey Finds," in Science Daily, July 27, 2007.)

The most surprising misconception – and the one most widely held, by a whopping two-thirds of the general public – is that the risk of dying from cancer is increasing. It's not. In fact, just the opposite is true: "the age-standardized cancer death rate has been decreasing since the early 1990s, and the 5-year relative survival rate for all cancers combined has improved steadily over the last 30 years." People with cancer are being treated more successfully – and are living longer – than ever before.

In 1971, President Nixon declared a national "War on Cancer." We, as a society, are far from declaring "V-C Day" and dancing in the streets, but the tide of battle is definitely turning in our favor. Yet, public perceptions – for quite irrational reasons – are still fixated on cancer as a burgeoning risk.

More than one in three Americans also believes walking around in smoggy Los Angeles is more likely to cause cancer than smoking twenty cigarettes a day. Air pollution's not good for anyone, to be sure, but – laid side by side with the proven cancer risk of tobacco smoke – there's no comparison. That one has a lot to do with that powerful psychological force called "denial." (I wonder how many who fall within that 38.7% are smokers?)

The remaining false statements in the survey – cell phones, deodorant and underwire bras causing cancer – are prominently featured in notorious urban-legend e-mails, that circulate from person to person. It's remarkable how persistent these untruths can be.

I know that, on the cell-phone question in particular – where nearly a third of respondents answered yes – some may come back and say, "Well, how do you know cell phones DON'T cause cancer?"

The answer is, "I don't – because it's notoriously difficult to prove a negative." Sure, some evidence could emerge, down the road, that cell phones cause cancer – but you could make the same prediction about mocha lattes, digital cameras, salad in pre-sealed plastic pouches, or any other relatively new product you'd care to name. Cancer warnings about microwave ovens were all over the place in the years right after that technology was introduced – with nary a shred of scientific evidence – but we rarely hear such claims anymore. There's a certain segment of the population that cynically greets every new technology with the knee-jerk response, "Yeah, and I'll bet it causes cancer." It doesn't take long for that water-cooler quip to take on an air of authority – and so, an urban legend is born.

There are a lot of impressive scientific resources directed toward curing various cancers, and may of them are showing positive results. I rejoice that, of all the different types of cancer, NHL is one that has been the focus of many recent breakthroughs – with more likely to be announced soon.

Back in the World War 2 era, they used to have a saying: "Loose lips sink ships." We can all do our part to aid the "war effort," by trying to make sure the statements we hear (and pass on to others) are based on fact, not rumor.

July 14, 2007 - How Long Have I Got?

“So, Doc, how long have I got?” That’s the question that often follows hard upon the dread announcement, “You have cancer.” With lymphoma – as an article in today’s New York Times makes clear – that all depends on what type of malignant cells you’ve got (Alex Berenson, “A Disease Affecting White Blood Cells, the Body’s Infection Fighters”).

It’s a companion piece to a news article about the radioimmunotherapy drugs Bexxar and Zevalin, and why doctors have been slow to prescribe them (an issue I dealt with in the June 23rd installment of my blog – “A Smart Bomb that Could Be in My Future”).

The Times article deals with the “Doc, How long have I got?” question rather bluntly:

“Doctors divide the disease’s many varieties into two broad categories: aggressive, and indolent, or slow-growing. Aggressive lymphoma can be cured in 65 percent to 75 percent of the cases. If it is not cured, patients usually die within two years.

Indolent lymphoma, which includes the follicular type, cannot be cured. But it typically responds to chemotherapy and can be put into remission for years in most patients. Eventually, though, it comes back, and each time it becomes more aggressive. Typically, patients survive about 10 years after their initial diagnosis, although the course of the disease varies widely.”

So, what type do I now have, aggressive or indolent? That’s the big question. Back in December, 2005, my grading – according to the Memorial Sloan-Kettering pathologist, who differed from the local pathologist – was that I have “B type, diffuse mixed large and small cell.” This actually demonstrates characteristics of both grades (large-cell lymphoma is aggressive, small-cell is indolent). For treatment purposes, “diffuse mixed large and small cell” is categorized as an aggressive lymphoma.

About a year ago (see blog entry for June 9, 2006 – “Cancer Conference”), I had the chance to ask one of the speakers at a cancer conference – a researcher from the University of Pennsylvania Hospital, Dr. Martin Carroll – about the “diffuse mixed large and small cell” grading. I wanted to know whether it in fact belongs to both categories, or whether it’s simply aggressive. He confirmed that it does demonstrate characteristics of both varieties. Does that mean, then, that I have the worst of both worlds, I asked?

You could say that, Dr. Carroll admitted.

If that’s so, then I wonder how the New York Times’ quick answer to the “How long have I got?” question can be applied to my particular case? Let’s see. With the aggressive component of my disease, I have a 65 percent to 75 percent chance of being cured completely. If I’m in the unlucky 25 to 35 percent, though, I’m likely to be gone within two years of diagnosis – which means that (since I was diagnosed a year ago last December), in the worst-case scenario, time’s wingèd chariot is rumbling rapidly onward on in my direction.

Yet, I have (or, at least, had) both types of lymphoma – indolent as well as aggressive. That means the prospect of a permanent cure is unlikely. Even if I’m in the lucky 65 to 75 percent whose aggressive cancer does get cured, I still have to worry about those pesky, indolent cells of mine – the ones that make for a chronic, incurable condition, whose symptoms can be managed pretty well but never turned back completely. The presence of those small, indolent cells would suggest that the answer to the “How long have I got?” question is “10 years, on the average.” (Of course, “average” could mean considerably more than 10.)

The good news is, I was diagnosed early, without having experienced much in the way of symptoms. I’m also on the younger side of the typical lymphoma patient’s profile – both factors which are in my favor. Furthermore, the field of lymphoma research is developing so rapidly that, even within that 10-year window, a whole new drug could be on the market by then – meaning that all bets are off.

Then, there’s the matter of those enlarged lymph nodes – three of them, at least (one of which was biopsied last week). If lymphoma turns out to be the cause (and not some benign, but long-lasting infection), then what type of malignancy is it – indolent, aggressive, or both?

If it’s more on the aggressive side, that could suggest that I fall into the unlucky 25 to 35 percent, and that it’s time to call out the Special Forces (second-line chemo, radioimmunotherapy or stem-cell transplant). If, as the local pathologist thought – back in December of 2005, before the Memorial Sloan-Kettering expert weighed in – the grading turns out to be indolent, then it’s a matter of just whacking the cancer mole back down again, and waiting for the next recurrence.

As for the CHOP chemo treatment I’ve already received (along with the gentler Rituxan), the Times article is blunt about its side-effects: “While effective, it is highly toxic and can damage the heart, so it can only be given a limited number of times.”

As for stem-cell transplants, that treatment is no bed of roses: “When drug treatments have failed, stem-cell transplants are another option. But they are extremely expensive and carry a risk of mortality of 3 percent to 30 percent, depending on whether doctors are using a patient’s own stem cells or transplanting cells from another patient.”

Bottom line? The answer to the “How long have I got?” question is not at all easy to come up with, in my case. There has always been some uncertainty about the grading of my cancer – an uncertainty that may continue, if this most recent needle biopsy turns out to be (like the last one) not such a good sample. Yet, even if the “diffuse mixed large and small cell” verdict does continue to be in place after my most recent test results come in, it’s maddeningly complex, in and of itself (having characteristics of both aggressive and indolent).

Most doctors shy away from giving a clear answer to “How long have I got?” anyway – any answer can be a self-fulfilling prophecy. So, I continue to live with ambiguity, “delicious” or otherwise.

Today's Claire's birthday, and I've got a party to plan. That's enough of ambiguity, for now.

June 16, 2007 - Labyrinth

I arise today at Presbyterian Camp Johnsonburg, where I’ve spent the night. It’s our church’s Family Retreat weekend. I like to attend at least a portion of this event each year, before heading back home to finish my sermon and conduct Sunday worship services.

Most retreat participants are families with young children. It’s a nice opportunity for them to get away and spend time together and with other families. Because Robin, our associate pastor, advises the planning committee, I have little to do, other than be here and enjoy the kids and their parents at play. It’s a refreshing change.

This morning, between the fishing and rowing on the lake and the noontime barbecue, I take a stroll over to the camp’s labyrinth – a walking-path in a sort of spiral pattern, whose boundaries are laid out with smooth stones. The camp staff put it in a few years ago, at the height of the labyrinth craze, as Christians were rediscovering this medieval devotional practice.

Most modern labyrinths are modeled after the famous one in Chartres Cathedral, in France. The idea is to spiral your way slowly into the center, then turn around and make your way back out again. Nothing could be more simple – or, more weighty with non-verbal meaning.

Johnsonburg’s labyrinth is pretty rustic, which is part of its appeal. It’s overdue for a little spring cleaning, but I don’t mind. Bright green seedlings poke their heads up amidst the stones, and the walkways are dusted with the crumbling detritus of last fall’s leaves.

From walking other labyrinths in times past, I’ve learned the best thing to do is to simply empty my mind and see what happens. This one has a rude wooden cross set up on a cairn of stones in the middle. When I reach it, I stand there and contemplate the cross for a moment, then realize I was probably meant to carry a stone in with me and place it on the pile. No matter. I see someone else’s stone lying on the ground nearby, evidently toppled from the top of the cairn. I pick it up and drop it onto the pile. Recycling is a good thing.

As I make my way out again, it occurs to me that this labyrinth-walk has some parallels to a human life. The first part of our lives is spent on a Godward journey, a spiritual quest. At one point or another – typically, closer to the end of life than its beginning – most of us start to become more concerned with what we’re leaving behind, than with what we’re attaining for ourselves. This is a fundamental turning, and for Christians it can occur as we’re contemplating the cross of Jesus. In one sense, it’s the vision of the cross that allows us to complete that turning.

Not that religious people have a monopoly on this kind of thinking. It’s a common- enough experience, in any human life – part of the process of maturation. The adult developmental psychologists speak of it as a season of generativity, as we come to think more about giving back than getting (see my November 20, 2006 blog entry for more on this).

Political scientists speak of second-term Presidents becoming increasingly concerned with their “legacy” – with how future historians are going to view them. That’s just one example of the secular form of this turning, which is expressed in Christian spiritual terms as a mid-life call to repentance and renewal.

At 50, I’m already a bit past the mid-point of my life (according to the average life expectancy for American men). The cancer adds a whole new ingredient. Sprinkle some positive CT-scan results into the actuarial stew, and you’d be well-advised to set the kitchen timer to go off a little sooner. I don’t think I’m being morbid or pessimistic as I say that. It’s just the facts – and, incidentally, the reason I got turned down last fall, as I tried to buy additional life insurance. Maybe I’ll be lucky, and live well into my 80s or 90s, as I always figured I would. My cousin Andy, who’s always touting the value of “good MacKenzie genes,” will insist I’m being alarmist in even thinking this way. But the actuaries, squinting through their Coke-bottle glasses, think not.

Cancer has carried me to the center of the labyrinth, to the place of turning, a bit sooner than most people. At the moment, I’m alone in this peaceful, woodland spot – yet, if I envision the company of all my fellow travelers walking beside me, most of them look older and grayer than me.

Of course, when I look at myself in the mirror, I realize I’m a good bit grayer than I used to be. It happens. Yet, still, I don’t feel ready to make the turning.

Enough of this. Back to the children.

April 3, 2007 - Lies, Damned Lies and Statistics

The Elizabeth Edwards and Tony Snow stories seem to be setting off an interesting debate, indeed. They’ve certainly catapulted cancer into the national consciousness.

A friend just sent me a link to a Washington Post article by one of that paper’s staff writers, David Brown: “For Cancer Patients, A Struggle to Prolong Hope as Well as Life.” Brown takes issue with some claims that have been made about Tony and Elizabeth’s respective prognoses.

President Bush said his press secretary “is not going to let this whip him.” John Edwards said of his wife that her disease – while incurable – may, in fact, be more like diabetes, in that it can successfully be managed for a long time. Brown questions the veracity of such comments, based on survival statistics for relapsed colon and breast cancer patients. When it comes to long-term survival, he claims, the odds are stacked heavily against both Tony and Elizabeth – although he also admits that statistics for relapsed patients are harder to find, in online and other reference sources, than statistics for patients receiving front-line treatments.

He seems to hint that the relative obscurity of the statistics is the result of some kind of dark cover-up on the part of modern medicine – that oncologists know perfectly well that most of their relapsed patients aren’t long for this world, but just aren’t telling. He goes on to cite the results of a research study that suggests doctors tend to be overly optimistic about their patients’ chances, but that patients are even more so: “A 2001 study asked 71 patients awaiting stem-cell transplants about their chances of dying from the treatment. On average they guessed 21 percent. Their doctors said 33 percent. Actual mortality was 42 percent.”

The diabetes analogy John Edwards used is a line I’ve actually used about my own prognosis. I got it from my own doctor, who deployed it just after saying – of recent, encouraging advances in Non-Hodgkin Lymphoma treatment – “If you had to choose a form of cancer to have, this is the one to choose.” So, Brown’s article hit me in the gut, in a very personal way (though I do need to remind myself that he’s talking about relapsed patients, a club to which I do not belong).

Brown’s article made me mad, in a way that few other things written about cancer have. It made me mad on behalf of Elizabeth and Tony, and anybody else who’s dealing with advanced cancer treatments. Using the image of a bell curve, he observes that a relatively small number of relapsed cancer patients are in the narrow “tail” of the curve, that stretches out to the farthest limits of the timeline. Most patients want to visualize themselves as being in that part of the curve, he says, and their doctors want to see them there, too.

I guess what bothers me about Brown’s article is that he sees that as a problem. Given the choice between a doctor who - consciously or unconsciously - bumps my chances of survival up a little, and another who reads the statistical averages like they’re a road map of Death Valley, I’ll go for the cockeyed optimist every time. (I’d have a sneaking suspicion that the pessimistic practitioner could give up on me too soon.)

Nineteenth-century British Prime Minister Benjamin Disraeli is noted for saying, “There are lies, damned lies and statistics” (sometimes people attribute this remark to Mark Twain, but Twain himself says he’s quoting Disraeli). I have a feeling that Brown’s use of statistics belongs to the “damned lies” variety. Sure, maybe his numbers are based on reliable averages, but the thing about averages is they’re just that: average.

Let’s say there are three relapsed patients sitting in a doctor’s waiting room. All three have the same form of cancer. Let’s also say that, for this form of cancer, statistics predict that only one relapsed patient out of three will live more than a year. As each of those patients, in turn, walks into the examining room, is the doctor going to prescribe a cutting-edge new therapy for only one of them? Of course not! The doctor doesn’t know which one of the three is going to make it – and, in fact, it’s possible that all three will do well (three being a rather small statistical sample).

By the same token, when President Bush approaches a microphone, he’s not likely to say, “Too bad about Tony, we’re going to miss him.” No, Tony is his friend, so he’s going to call him a fighter. The same is true of John Edwards, who’s not going to scrimp on his tough talk about standing side-by-side with his wife and doing whatever’s necessary.

Back in college, I wrote a senior thesis on Ludwig Wittgen- stein's philosophy of language. One thing that impressed me about this Austrian thinker – specifically, his later writings – was his remarkably flexible, even playful understanding of language and the ways we actually use it. Wittgenstein talks of “language games,” that each have their own rules. In interpreting the meaning of things people say, it’s hard to generalize from one game to the next - and, when we do, we tend to get into trouble.

When President Bush and John Edwards are speaking pugnacious words about the prospects of people they care about, they’re not reading papers at a medical convention. They’re speaking words of love – and love has no place on a bell curve, none whatsoever.