The Final Bakesale

sonya_2

The Final Bakesale

by

Sonya Huber 

Al Gore did not invent global warming or PowerPoint (I don’t think). He did make a movie about global warming using PowerPoint. And some say it was dull. I was so shaken by it that I immediately started surfing Al Gore’s Internet to buy gadgets with solar panels. I bought a shitty one that was supposed to act as a USB charger for my phone but then I left it out in the rain and it broke. I bought a lamp from IKEA that has a solar charger, but it didn’t really charge through a window, so I had to bring it outside to charge it, and when I tried to use it to read by, its little light bulb was horribly dim, and the light source was probably equally disappointing to the child in Africa who was supposed to get a similar lamp as a result of my purchase. Now the lamp lives on a bookshelf in my basement, its prehensile neck curled around its body in loneliness. I did other stuff and got an energy audit and donate money and stuff. But I did not stop global warming and neither did Al Gore. It is still here, droning on, quietly wanting to kill us, and our demise will be narrated by Al Gore’s droning voice.

The fact that global warming as an idea is all mathy and graphy and incomprehensibly bleak prompted scientist-filmmaker Randy Olsen to declare the crisis “boring” and a PR disaster, illustrated with “all the same shots of “melting glaciers, polar bears, carbon emissions.” Olsen doesn’t mince words in an interview with Spiegel Online: he calls science blogs posting articles about the minutia of climate change “boredom so putrefied and crystallized it’s in an unadulterated form that could make even a robot want to commit suicide.” I know my science- and journalist and science-journalist friends will leap out of their seats and off of their balance balls and treadmill desks in anger at that quote and also say that this is exactly what makes their jobs interesting and important: bridging that gap and preventing the robots from killing themselves on crystallized boredom. Actually, that is Olsen’s point, too.

Olsen’s idea is that Gore’s movie, An Inconvenient Truth, should have told a story, such as the fascinating question of why the world was able to address—and kind of solve—the problem with the ozone hole (yay, us!) but hasn’t done that for global warming.

At first I wanted to hate on this guy, but he’s right. Sort of. And provocative–despite the fact that I love An Inconvenient Truth so much that I bought my own copy to have as a personal talisman to shade myself during the apocalypse, and despite the fact that I give money to anything that Al Gore tells me to in order to throw pennies at said approaching apocalypse.

But, to quibble (which is my only survival skill), Olsen also puts too much on the scientists and science-communicators, and I think he’s missing a bigger point, which is that we (humans in our high-school ways) will go out of our way to look at GIFs of kittens in wrapping paper and give our brains a rest from the thought of mass extinction. It’s not the message that’s boring as much as the fact that we, people, the problem, are boredom-averse and kitten-GIF-prone.

So, without further ado, here are reasons why Mass Death Really Is and Will Be Boring Big Time and why if we’re going to confront boredom, we have to first admit our boredom and take it apart into its component parts, some of which we will recycle and the rest we will use to build solar panels.

1. Death limits one’s social life.

I have never died, so I don’t know whether it would be boring or not. There is the dramatic final moment, the struggle for breath, but really—there’s not much to look forward to. And the lead-up to it can be excruciating and scary, I am told. And I imagine our collective deaths might be very boring, especially with sputtering cable as the brown-outs disrupt our service and our programs. Pain can certainly be boring, and starvation (as one example) has to offer both the opportunity for putting everything in perspective but also takes the cake (sorry) for sheer repetitiveness.

2. No flowers at the funeral. This is a huge problem. If huge swathes of us die together, we each miss out on something we have secretly fantasized about since our parents grounded us for the first time: the idea of everyone being sorry for everything at our lavish or tastefully simple memorial service. We don’t get our playlist and slideshow and moment in the sun if everybody’s crowding the stage. It’s enough to make one feel meaningless, which is BORING. Truly!

3. Zoos will suck, because of all the species extinctions and such.

4. Thinking about all the time I have wasted on “important and painstaking tasks” that an apocalypse such as ours is BORING.

As one example, I have told my son to brush his teeth 5 times every morning, every day, since he was a toddler. In and of itself this was boring, as are many parenting tasks, but they’re made mostly bearable because they seem to be an investment in a developing human who will one day become an adult and invent a new cloud-seeding device that will bring rain when we are all parched and dying. But if he’s out on the edge of some highway scavenging roadkill, his commitment to teeth brushing is only going to be a hindrance that makes him squeamish about his new life on the edge of subsistence. (He’ll be alone because I’ll be dead. I’m fragile—I’ll go quick).

5. Less intellectual stimulation and no “future” to plan for unless I am dreaming of coming back as a cockroach.

I like to read, and reading is interesting. I am a personal essayist, so I get off on esoteric distinctions about the positioning of a narrator in a narrative. I have all this expertise that will suddenly be useless. So that’s a bummer. My main form of intellectual entertainment: gone. Instead we’ll all be living in a world like Cormac McCarthy’s The Road. Well, some of us will be. I’ll be one of those people who will get eaten right away. That’s who you kill first: the personal essayists. But then again, maybe if I find Randy Olsen, he’d hook me up, because he says that the story of the big Bake-Sale has to be told in a way that’s personal so that people can get it, using “the narrative instinct.” Okay, Randy, this is my audition to be on your team. If I can’t get on Randy’s, I want to be with Bear Grylls.

6. It is a universally acknowledged truth that nobody likes to fuck up.

Global warming feels like a big fuck-up because it is. I didn’t start the fire, as Billy Joel annoyingly sings, but here I am every day shoveling fuel onto it. Like the Germans alive during Hitler’s reign, we could be wracking our brains with ways to self-immolate and do something drastic to put our bodies in front of the tracks or in traffic or whatever it might take (even Al Gore doesn’t seem to know), but I don’t see many of us lighting up in that way. So there’s the horrible but vague responsibility thing, which leads to a curdling regret in the stomach. I have to say that curdling regret is the least sexy emotion known to mankind. Let’s think about Jennifer Lawrence instead. By the way, if you are beset with this stomach curdling, as I am, please buy Mary Pipher’s book The Green Boat because it is like a temporary antacid and makes you less want to give up.

7. Kids dying: right. That’s not boring, that’s excruciating, but we call it boring because it lives near excruciating in the “Shit, No!” center of our brain. For God’s sake, I was driving behind a pediatric transport ambulance yesterday on the highway and I started to cry. The ambulance was decorated with images of fingerpaint handprints. Put a knife in my eye. And inside was one North American kid who had health insurance and who might have had a broken collarbone or something. But the big Fish Fry would involve lots of kids. White kids, privileged kids who have massive Lego collections, including my son. Just think of the waste of all that money spent purely on Legos. I should have spent all that money on buying a plot of land for subsistence farming (when I couldn’t even raise a head of broccoli in my pathetic two-foot garden). I really should have developed a completely different skill set. And I didn’t. I fucked up. (Back to # 6.)

8. This Story is so Boring Because It Has Happened Before! I Already Saw This One!

Here’s the messed up obviousness: kids die all over the place, every day, of preventable diseases like malaria and dysentery caused by contaminated water. That is also “boring,” by which we mean: Holy Fuck. What the hell can fix that? My twenty bucks, really? Then how come it keeps happening? How much money do you need to fix that forever? Couldn’t you just tax us all and prevent that from ever happening again? Oh there’s all kinds of geopolitical issues involved including the IMF and debt to the World Bank and … naaarrrgggghhhh. Where is Bono? Bono is the closest thing we have to Bat Man. Can’t he just fix this?

Boring is the idea that the same shit keeps happening. Yes, as always, through the recorded history of human existence since colonialism, the brown people near the Equator and on islands and shorelines with smaller capital reserves and fewer opportunities to invest in infrastructure will get it in the teeth.

It’s boring when the sequel is just the same as the first 100 volumes.

9. Uneasy is Boring. Super-uneasy vagueness lives right near the “Shit, No!” brain-center.

Boring is the idea that the authority figures promising security and telling us to sock our pennies away might be wrong: instead of skimming our money into retirement accounts, we should invest in the rest of the world, in a post-currency place where hydroponics and water filters and swamp coolers will ensure some small measure of survival for us and others. But… is that right? I don’t trust the stock market but I don’t know what to do about it. I couldn’t even make a gingerbread house last night out of graham crackers with my kid. And really, I also really don’t even know what I’m teaching next semester or how to get my son to read more. So Super-Uneasy is pushed to the background by Daily-Uneasy. It’s only when I am done with grading that I even really think about the big GW (not the other GW, who is happily making an oil painting as you read this).

10. There are no aliens. If there were aliens with green bile and nefarious shiny outfits to fight, we’d be all over this shit like Will Smith. There would be web-cams and guns and t-shirts and boobs and kitten GIFs and cake and everything good.

And in the conclusion I am supposed to make the Final Countdown less boring, but really, it’s a yawn. I’d much rather watch something else.

***

Sonya Huber is an assistant professor of creative writing at Fairfield University and a faculty member in the low-residency MFA program at Fairfield. Her work has appeared in literary journals including Sonora Review, Creative Nonfiction, Crab Orchard Review, Fourth Genre, Topic, Passages North, Main Street Rag, Literary Mama, Kaleidoscope, Hotel Amerika, and Sports Literate, among others; in anthologies including Learning to Glow (University of Arizona Press), Young Wives’ Tales  (Seal Press), Bare Your Soul (Seal Press), Reading for the Maternally Inclined: The Best of Literary Mama (Seal Press), Mama Ph.D. (Rutgers University Press), and Campus, Inc. (Prometheus Books); in periodicals including The Washington Post Magazine, The Chronicle of Higher Education, Psychology Today, In These Times, Sojourner, and Earth Island Journal. More information available at http://www.sonyahuber.com.

Not Your Median Patient: How A Climate Scientist Faced Cancer

Stephen Schneider

Stephen Schneider, climatologist and cancer survivor, died on July 19. Photo credit Patricia Pooladi / National Academy of Sciences; printed in Stanford Magazine, July/Aug 2010.

Not Your Median Patient:
How A Climate Scientist Faced Cancer
By John Unger Zussman

Stephen Schneider, the environmental scientist, died of a heart attack last month at the age of 65. He was a Stanford professor, a member of the Nobel Prize-winning Intergovernmental Panel on Climate Change, and a tireless and articulate advocate for action to counteract the threat of global warming. The blog Realclimate.org has posted a moving “scientific obituary” by Benjamin Santer of the Lawrence Livermore National Laboratory. There was even a tribute on the NPR program Science Friday.

What most of the obituaries mention only in passing (if at all) is that Schneider was a survivor of a rare and often deadly cancer called mantle cell lymphoma. He was diagnosed in 2001 and refused to accept both the medical establishment’s standard treatment and its dismal prognosis. Instead, he diligently applied to his cancer the same principles of decision analysis that he used as a climate scientist, and as a result persuaded his oncologist, Dr. Sandra Horning, to treat him more aggressively than the protocols dictated. In 2005, safely in remission, he published an account of that battle, The Patient from Hell.

I’ve written about cancer in these pages before, recounting what I learned when someone I love, “Bonnie,” was diagnosed with breast cancer, and discussing the role of environmental toxins in causing cancer. If you read that first piece, you might be surprised that Bonnie, who chose to “undertreat” her cancer, looked to Schneider, who chose to “overtreat” his, as a positive model. But she did, and in this essay I want to explain why.

Both Bonnie and Schneider found inspiration, in turn, from Stephen Jay Gould, the late, great evolutionary biologist. At age 41, Gould was diagnosed with abdominal mesothelioma, a cancer from which the median survival was only eight months after diagnosis. Two years later, he published a seminal essay entitled “The Median Isn’t the Message,” in which he interpreted that statistic and explained how he took hope from it. Beautifully written, it’s must reading—especially if you have been diagnosed with a serious illness.

The median, if you remember your college statistics, is a measure of the “average value” of a set of measurements that are distributed on a curve. It refers to the “middle” value if the measurements are sorted, high to low—half the scores are above, half below. It’s useful because it’s less sensitive to extremes than the mean, or mathematical average.

Gould realized that there was nothing magical about the median; it’s a measure of central tendency, but it doesn’t describe the distribution. His own survival might be any data point on that curve. Yes, 50% of abdominal mesothelioma patients survived eight months or less, but another 50% survived longer—some, given the characteristics of the distribution, significantly longer. Rather than despair, Gould set about figuring out how he could get himself on the long end of that curve.

And he did. He beat that cancer and had twenty more healthy and productive years—completing his magnum opus, The Structure of Evolutionary Theory—before he succumbed to an unrelated lung cancer in 2002.

Schneider’s insight was no less profound. He looked at the way the medical profession evaluates cancer treatments based on endpoints—survival or recurrence of the median patient at the end of a clinical trial of one treatment vs. another (or vs. a placebo). A good starting point, he said. But what if the disease is rare (like his) and there are no trials? Or what if a promising new treatment hasn’t yet been tested? Or what if you don’t resemble the median patient?

This situation reminded Schneider of climate science, in which you have a single patient (the Earth) whose symptoms are beginning to alarm you. Unfortunately, you lack good data on endpoints, your predictive models are imperfect, and the error ranges in your forecasts multiply upon each other. You have no other planets to run experiments with. “You can’t do controlled experiments on the future,” Schneider said in his last major interview. “What are we going to do, wait for it? Then apologize to posterity that we did nothing to slow it down?” Of course not. You collect as much data as you can about the climatic processes. You make your best estimates of the probabilities of each outcome, cognizant that they are only estimates, while continuing to monitor the data and update your models. And you make your best recommendations for policy that, you hope, will avoid the most catastrophic outcomes.

Applying these principles to medicine, in place of absent or inadequate clinical trials, or to supplement them, Schneider recommended process knowledge, Bayesian updating, and decision analysis. Process knowledge means that “your doctors should know how various treatments—both mainstream and not—work, how treatments for diseases similar to yours might work for you, what treatments are unlikely to be effective, and how your overall health could be affected.” Bayesian updating is a fancy statistical term for monitoring your response to treatment and adjusting it accordingly. Decision analysis means weighting potential outcomes, risks, and benefits by your doctors’ estimate of the likelihood of their occurrence as well as their confidence in that estimate.

Finally, Schneider, like Bonnie, insisted that his medical decisions were his to make. He treated his doctors as medical advisors, valuable for their knowledge, experience, and intuitions, but ultimately he had to make his own choices based on their advice.

If this sounds abstract, let me try to clarify with an example. One of the treatments Schneider’s doctors recommended, in addition to standard chemo, radiation, and a bone marrow transplant, was a new antibody drug called Rituxan. Rituxan targets a protein called CD20 that is expressed on the surface of B cells, the immune cells that cause mantle cell and other lymphomas. Essentially, Rituxan allows the body’s immune system to recognize B cells as foreign cells, which are then destroyed by the immune system’s NK (natural killer) cells.

The standard protocol was to administer a large dose of Rituxan (along with conventional chemo), then perform a bone marrow transplant, and then—to wait and see if the cancer came back, as detected by a CT scan. If it did—and 50% of patients on this protocol lost remission at least once within four years—they would try it again. But a second remission was harder to achieve than the first.

This didn’t sound like a good idea to Schneider. First, he questioned the means of monitoring his response to treatment. A CT scan won’t detect signs of cancer until there were already hundreds of millions of malignant cells and a detectable lump. Was there a way to monitor him more closely? It turned out there was, a highly sensitive molecular-based diagnostic test called PCR (polymeric chain reaction). PCR would provide a much more accurate measure of Schneider’s cancer cell count.

Schneider also realized that if the protocol didn’t kill the disease completely—and it was a coin toss whether it would—then the remaining cancer cells would keep reproducing, and in a few years he’d be right back where he started. Why not take a different tack, he reasoned, and presume the cancer is still present? It didn’t matter if his cancer was never cured, so long as the malignant cell count was kept below a dangerous level.

So Schneider requested what he called “maintenance therapy.” After the standard chemo, Rituxan, and bone marrow transplant, he wanted to receive low “maintenance” doses of Rituxan at periodic intervals. He also wanted periodic counts of his CD20 cells (to measure whether the Rituxan was wearing off) and cancer cells (via PCR), so that the dosage and interval could be adjusted if necessary. If his cancer cell count crept above negligible levels—signifying that his immune system wasn’t adequately controlling the cells—he would get another dose of Rituxan.

One of his doctors disapproved strongly. “We have no data whatsoever to suggest that low-dose interventions would have any benefit,” he said, “and operating without data would be foolhardy.” If there were no clinical trials showing that a particular treatment worked, it would be risky, idiotic, and even unethical to use it. Besides, side effects of the Rituxan might be damaging or even fatal.

So Schneider took his doctors through a decision analysis hypothetical. “Suppose you brought 100 people in off the street and gave them periodic maintenance doses of Rituxan,” he asked. “How many would die from the treatment?” The docs protested that they didn’t know because there were no trials. But Schneider persisted; he asked them to use their best clinical intuition and judgment. “Probably none, perhaps one,” Dr. Horning finally acknowledged.

“Now suppose you put 100 patients like me on the standard protocol,” Schneider asked. “How many would lose remission within five years?” “Probably eighty,” answered the docs. “And how many of those would not get back into remission with another chemo regime?” “Forty,” estimated the docs. “Who wouldn’t take that risk?” Schneider argued.

Schneider understood that he and his doctors were wandering into uncharted territory with Rituxan maintenance therapy. “There was no telling it would work,” he wrote in The Patient from Hell, “and no previous data that might help us develop a treatment plan.” But those are the risks you have to take when you are essentially running an experiment with incomplete data and a sample size of one. He viewed climate change the same way; with only one earth to experiment with, we’d better choose the treatment with the best chance of avoiding a catastrophic outcome.

This, I think, gives you a flavor of the way Schneider approached problems, both in climate science and in his battle with cancer. Ultimately, Dr. Horning agreed to put him on maintenance therapy—a low dose of Rituxan every three months—and it worked.

But Schneider was also an excellent writer and an engaging speaker, so I should get out of the way and let him explain it himself. Specifically, in 2008, Schneider gave a presentation at Stanford Medical School’s Café Scientifique entitled “Cancer and Climate Change: Parallels in Risk Management,” in which he outlined his approach to both issues. This talk is accessible and informative, and if you’re interested, I urge you to view it on YouTube or download it as a podcast from iTunes (available in the Medcast series from Stanford on iTunes U).

Near the end of the lecture (around 1:11), Schneider speculates, like Bonnie, that one reason doctors are so tied into the “standard treatment” has to do with liability issues. They are sometimes held accountable when, despite their best efforts, things go wrong. “I prescribed the standard treatment” is an almost universally successful defense against malpractice lawsuits. Schneider suggests that legislation is needed to exculpate doctors who, with their patients’ understanding and consent, depart from standard treatment to personalize their care.

One might wonder whether the aggressive treatment of Schneider’s cancer weakened his heart and eventually led to his heart attack. Of course, it’s impossible to know for certain. But it was a risk he took knowingly and voluntarily, believing that without that treatment he would likely be dead.

What Schneider and Bonnie share is their refusal to take the standard protocol on faith, their willingness to get their hands dirty with admittedly limited data, their insistence that their treatment be personalized, and their resolve to take responsibility for their own treatment decisions and outcomes. In the end, Schneider was able to spend his last nine years in good health, with his family, doing his life’s work—trying to make sure that we approach our climate the same way he approached his cancer. And that’s all any of us can ask for.

Copyright © 2010, John Unger Zussman. All rights reserved.

<!–[if !mso]> <! st1:*{behavior:url(#ieooui) } –>

Not Your Median Patient:
How A Scientist Faced Cancer
By John Unger Zussman

Stephen Schneider, the environmental scientist, died of a heart attack last month at the age of 65. He was a Stanford professor, a member of the Nobel Prize-winning Intergovernmental Panel on Climate Change, and a tireless and articulate advocate for action to counteract the threat of global warming. The blog Realclimate.org has posted a moving “scientific obituary” by Benjamin Santer of the Lawrence Livermore National Laboratory. There was even a tribute on the NPR program Science Friday.

What most of the obituaries mention only in passing (if at all) is that Schneider was a survivor of a rare and often deadly cancer called mantle cell lymphoma. He was diagnosed in 2001 and refused to accept both the medical establishment’s standard treatment and its dismal prognosis. Instead, he diligently applied to his cancer the same principles of decision analysis that he used as a climate scientist, and as a result persuaded his oncologist, Dr. Sandra Horning, to treat him more aggressively than the protocols dictated. In 2005, safely in remission, he published an account of that battle, The Patient from Hell.

I’ve written about cancer in these pages before, recounting what I learned when someone I love, “Bonnie,” was diagnosed with breast cancer, and discussing the role of environmental toxins in causing cancer. If you read that first piece, you might be surprised that Bonnie, who chose to “undertreat” her cancer, looked to Schneider, who chose to “overtreat” his, as a positive model. But she did, and in this essay I want to explain why.

Both Bonnie and Schneider found inspiration, in turn, from Stephen Jay Gould, the late, great evolutionary biologist. At age 41, Gould was diagnosed with abdominal mesothelioma, a cancer from which the median survival was only eight months after diagnosis. Two years later, he published a seminal essay entitled “The Median Isn’t the Message,” in which he interpreted that statistic and explained how he took hope from it. Beautifully written, it’s must reading—especially if you have been diagnosed with a serious illness.

The median, if you remember your college statistics, is a measure of the “average value” (central tendency) of a set of measurements that are distributed along a scale. It refers to the “middle” value if the measurements are sorted, top to bottom—half the scores are above, half below. It’s useful because it’s less sensitive to extremes than the mean, or mathematical average.

Gould realized that there was nothing magical about the median; it’s a measure of central tendency, but it doesn’t describe the distribution. His own survival might be any data point on that curve (constrained by the shape of the distribution). Yes, 50% of abdominal mesothelioma patients survived eight months or less, but another 50% survived longer—some, given the characteristics of the distribution, significantly longer. Rather than despair, Gould set about figuring out how he could get himself on the long end of that curve.

And he did. He beat that cancer and had twenty more healthy and productive years—completing his magnum opus, The Structure of Evolutionary Theory—before he succumbed to an unrelated lung cancer in 2002.

Schneider’s insight was no less profound. He looked at the way the medical profession evaluates cancer treatments based on endpoints—survival or recurrence of the median patient at the end of a clinical trial of one treatment vs. another (or vs. a placebo). A good starting point, he said. But what if the disease is rare (like his) and there are no trials? Or what if a promising new treatment hasn’t yet been tested? Or what if you don’t resemble the median patient?

This situation reminded Schneider of climate science, in which you have a single patient (the Earth) whose symptoms are beginning to alarm you. Unfortunately, you lack good data on endpoints, your predictive models are imperfect, and the error ranges in your forecasts multiply upon each other. You have no other planets to run experiments with. “You can’t do controlled experiments on the future,” Schneider said in his last major interview. “What are we going to do, wait for it?” Of course not. You collect as much data as you can about the climatic processes. You make your best estimates of the probabilities of each outcome, cognizant that they are only estimates, while continuing to monitor the data and update your models. And you make your best recommendations for policy that, you hope, will avoid the most catastrophic outcomes.

Applying these principles to medicine, in place of absent or inadequate clinical trials, or to supplement them, Schneider recommends process knowledge, Bayesian updating, and decision analysis. Process knowledge means that “your doctors should know how various treatments—both mainstream and not—work, how treatments for diseases similar to yours might work for you, what treatments are unlikely to be effective, and how your overall health could be effective.” Bayesian updating is a fancy statistical term for monitoring your response to treatment and adjusting it accordingly. Decision analysis means weighting potential outcomes, risks, and benefits by your doctors’ estimate of the likelihood of their occurrence as well as their confidence in that estimate.

Finally, Schneider, like Bonnie, insisted that his medical decisions were his to make. He treated his doctors as medical advisors, valuable for their knowledge, experience, and intuitions, but ultimately he had to make his own choices based on their advice.

If this sounds abstract, let me try to clarify with an example. One of the treatments Schneider’s doctors recommended, in addition to standard chemo, radiation, and a bone marrow transplant, was a new antibody drug called Rituxan. Rituxan targets a protein called CD20 that is expressed on the surface of B cells, the immune cells that cause mantle cell and other lymphomas. Essentially, Rituxan allows the body’s immune system to recognize B cells as foreign cells, which are then destroyed by the immune system’s NK (natural killer) cells.

The standard protocol was to administer a large dose of Rituxan (along with conventional chemo), then perform a bone marrow transplant, and then—to wait and see if the cancer came back, as detected by a CT scan. If it did—and 50% of patients on this protocol lost remission at least once within four years—they would try it again. But a second remission was harder to achieve than the first.

This didn’t sound like a good idea to Schneider. First, he questioned the means of monitoring his response to treatment. A CT scan won’t detect signs of cancer until there were already hundreds of millions of malignant cells and a detectable lump. Was there a way to monitor him more closely? It turned out there was, a highly sensitive molecular-based diagnostic test called PCR (polymeric chain reaction). PCR would provide a much more accurate measure of Schneider’s cancer cell count.

Schneider also realized that if the protocol didn’t kill the disease completely—and it was a coin toss whether it would—then the remaining cancer cells would keep reproducing, and in a few years he’d be right back where he started. Why not take a different tack, he reasoned, and presume the cancer is still present? It didn’t matter if his cancer was never cured, so long as the malignant cell count was kept below a dangerous level.

So Schneider requested what he called “maintenance therapy.” After the standard chemo, Rituxan, and bone marrow transplant, he wanted to receive low “maintenance” doses of Rituxan at periodic intervals. He also wanted periodic counts of his CD20 cells (to measure whether the Rituxan was wearing off) and cancer cells (via PCR), so that the dosage and interval could be adjusted if necessary. If his cancer cell count crept above negligible levels—signifying that his immune system wasn’t adequately controlling the cells—he would get another dose of Rituxan.

One of his doctors disapproved strongly. “We have no data whatsoever to suggest that low-dose interventions would have any benefit,” he said, “and operating without data would be foolhardy.” If there were no clinical trials showing that a particular treatment worked, it would be risky, idiotic, and even unethical to use it. Besides, side effects of the Rituxan might be damaging or even fatal.

So Schneider took his doctors through a decision analysis hypothetical. “Suppose you brought 100 people in off the street and gave them periodic maintenance doses of Rituxan,” he asked. “How many would die from the treatment?” The docs protested that they didn’t know because there were no trials. But Schneider persisted; he asked them to use their best clinical intuition and judgment. “Probably none, perhaps one,” Dr. Horning finally acknowledged.

“Now suppose you put 100 patients like me on the standard protocol,” Schneider asked. “How many would lose remission within five years?” “Probably eighty,” answered the docs. “And how many of those would not get back into remission with another chemo regime?” “Forty,” estimated the docs. “Who wouldn’t take that risk?” Schneider argued.

Schneider understood that he and his doctors were wandering into uncharted territory with Rituxan maintenance therapy. “There was no telling it would work,” he wrote in The Patient from Hell, “and no previous data that might help us develop a treatment plan.” But those are the risks you have to take when you are essentially running an experiment with incomplete data and a sample size of one. He viewed climate change the same way; with only one earth to experiment with, we’d better choose the treatment with the best chance of avoiding a catastrophic outcome.

This, I think, gives you a flavor of the way Schneider approached problems, both in climate science and in his battle with cancer. Ultimately, Dr. Horning agreed to put him on maintenance therapy—a low dose of Rituxan every three months—and it worked.

But Schneider was also an excellent writer and an engaging speaker, so I should get out of the way and let him explain it himself. Specifically, in 2008, Schneider gave a presentation at Stanford Medical School’s Café Scientifique entitled “Cancer and Climate Change: Parallels in Risk Management,” in which he outlined his approach to both issues. This talk is accessible and informative, and if you’re interested, I urge you to view it on YouTube or download it as a podcast from iTunes (available in the Medcast series from Stanford on iTunes U).

Near the end of the lecture (around 1:11), Schneider speculates, like Bonnie, that one reason doctors are so tied into the “standard treatment” has to do with liability issues. They are sometimes held accountable when, despite their best efforts, things go wrong. “I prescribed the standard treatment” is an almost universally successful defense against malpractice lawsuits. Schneider suggests that legislation is needed to exculpate doctors who, with their patients’ understanding and consent, depart from standard treatment to personalize their care.

One might wonder whether Schneider’s aggressive treatment of his cancer weakened his heart and eventually led to his heart attack. Of course, it’s impossible to know for certain. But it was a risk he took knowingly and voluntarily, believing that without that treatment he would likely be dead.

What Schneider and Bonnie share is their refusal to take the standard protocol on faith, their willingness to get their hands dirty with admittedly limited data, their insistence that their treatment be personalized, and their resolve to take responsibility for their own treatment decisions and outcomes. In the end, Schneider was able to spend his last nine years in good health, with his family, doing his life’s work—trying to make sure that we approach our climate the same way he approached his cancer. And that’s all any of us can ask for.

Copyright © 2010, John Unger Zussman. All rights reserved.