“When Cancer Comes to Evansville Indiana” By Jason Baldinger

 

 

When Cancer Comes to Evansville Indiana

she says they stayed 
in casinos every night
they ate like kings
steaks, all you can eat crab legs
the best pork chops she ever had

she shovels mashed potatoes
with white gravy in her mouth
asks when the waitress’s surgery is
they speak in hushed tones
the conversation breaks down
into promises of future prayers

when cancer comes to Evansville Indiana
mortality is another strong wind
lost in the yellow flowers
that stain the fields here every May

mortality is just another wave on the Ohio

 

About the Author: Jason Baldinger is a poet from Pittsburgh, Pennsylvania.  He was recently a Writer in Residence at Osage Arts Community, and is founder and co-director of The Bridge Series. He has multiple books available including the soon to be released The Better Angels of our Nature (Kung Fu Treachery) and the split books The Ugly Side of the Lake with John Dorsey (Night Ballet Press) as well as Little Fires Hiding with James Benger (Kung Fu Treachery Press). His work has been published widely in print journals and online. You can listen to him read his work on Bandcamp on lps by the bands Theremonster and The Gotobeds.

 

Photo Credit: Arthur Rothstein “Truck driver in diner. Clinton, Indiana” (1940) The Library of Congress

A Review of John Rybicki’s When All the World is Old

Rybicki3dforweb

A Review of John Rybicki’s When All the World is Old

By Kirsten Clodfelter

John Rybicki opens each section of When All the World is Old, his third poetry collection, with excerpts from journal entries written by his late wife, the poet Julia Moulds. Her voice echoes in brief flickers so that as we move forward into Rybicki’s own language, we hear her still: “I worry again and again about him losing me.” The weight of that loss—of knowing what trauma is coming before it’s yet arrived, and then, when it finally has, of learning how to navigate a way through it—is explored with candor and power in his stunning writing. Rybicki honors Moulds by building this book not just to her or for her or about her but also, in using her voice in the pages, literally of her—ensuring that his devastation becomes ours as well, a burden that weighs us down as we read, but maybe, in the tiniest way, is also one that we can help shoulder.

My mother was 41 when she died, just a handful of years younger than Rybicki’s wife, but they prepared differently. For my sisters and I, there was no tender last love note, no post-bath, steam-written secret message, no treasure to decode across the mirror or window or anywhere, later, no matter how willing we would have been to “place our mouths close to the glass” and “fog it with our breath / after she is gone.”

Rybicki writes about the kind of day-to-day living shaped by the long-shadowed awareness that the minutes we have left are diminishing; he admits, “It has been too much for too long and we know it / is time to take hold of the lightening and let it kill her…” and it’s cruel, the way we are tasked with somehow being our best, or happiest, or most loving selves in that final interim before the goodbye—if we are lucky or unlucky enough to have that kind of warning—while at the same time facing down the very worst things we can imagine. Rybicki asks, “Why can’t I say yes to the laughter in my chest?” But of course we already know why. It’s because we understand, as Rybicki understands, that his “wife is the center of it all. Everything grows / from her.”

So Rybicki does not laugh, but he does put on his bravest face. At her request: “Keep me safe,” he “is on his watch,” is “trying to smuggle her / out of a burning city,” careful to offer his reminder gently, “…Whatever you do, / love, don’t look back,” the way we might pull a blanket over the folded body of a person in our care when we find that they’ve fallen asleep on the couch. But Rybicki cannot shelter us from the truth—even the most impressive love we are capable of giving is not always enough to keep someone from leaving, and in the pages of this book we are asked to stand shoulder to shoulder with Rybicki and look back with him as the city smolders, to bear witness to the depth of his adoration and anguish, watching for the moment when he finally feels ready to “stand in defiance / of our parting and go to war to make you live again.”

In the months after her diagnosis, I used to catch my mother sneaking cigarettes in the bathroom. Smoke would leak through the door when, after wandering through the entire house, I’d finally think to crack it open and look for her there, interrupting—in the sudden and unceremonious way that children are always doing—her meager attempt at disappearance. She would fan her hand in front of her face frantically—the worst fucking magician you’ve seen in your life—and after the pinched, “Shit, shit,” and the tell-tale flush, she’d study me slyly and say, “Don’t tell your father.” Maybe in those moments she was thinking of our history, of the innocuous secrets we already shared and also of all the ones we wouldn’t, the things that at some point she must have realized she’d now never get to know—the first time I kissed a boy, had my heart broken, screwed up a friendship, found my footing and felt sure of the way forward, fell in love. Her voice was always very serious when she’d say this, or maybe it only appeared that way because of how easy it was by then to see the bones of her face—but those words weren’t a warning, they were a plea.

At ten, I was too young to understand why I should have been outraged to find my mother layering this extra poison into her body—cigarettes on top of radiation on top of chemo on top of cancer on top of cigarettes, but then, by the time I was old enough to reason that this action was selfish or ignorant, I was too young to understand that sometimes these little rebellions are a small pleasure, an anchor. When you’re dying, there are still things that need doing. There’s milk that needs to be bought, litter in the cat box that needs changed, lunches to pack before school, math homework that needs checking. So from time to time she snuck a cigarette—one of only a few choices she could still control, a type of ownership of her body’s betrayal. Who cares?

It’s the smallest things that we gather into our pockets and carry with us as daily reminders. In “On a Piece of Paper You Were About to Burn,” Rybicki recounts his desperate missing in glimpses and asks us not to look away: “You rock on the kitchen floor hugging your own legs, / weeping and kissing a face so tiny / you could cover it with a penny.” He’s seeking an answer, “How do you hold the dead,” and we don’t know either, so we keep reading to figure it out with him.

My daughter, 20 months old, loves to stand beneath a certain picture collage in our living room and hold her hands above her head, calling, “Up, up,” so that she can be lifted to honk the nose of each subject in the photographs, proudly naming us as she points, “Momma, Dada, Bebe.” When I am the one doing the holding, she is the most interested in pictures of her father, and I offer tiny, sing-song consolations, “Daddy’s at work,” “… at the store,” “…will be home right after nap.” But I am capable of imagining, in a different circumstance, the exact way it would break me right open to hear the squeal of this question each morning as we looked at those photographs and not have a single way to explain that Dad won’t be home at 4:30 or with hugs or groceries or ever again, and to think of it always leaves me in tears, the pain of that loss—just the idea of it—fresh and immediate and real even when my partner is in the next room watching television or asleep beside me in our bed.

In a collection that easily calls to mind other aching and beautiful homages to the way we survive after loss, like Mary Jo Bang’s Elegy and Donald Hall’s Without, John Rybicki’s poems in When the World is Old force us toward these moments of consideration with urgency—a reminder, perhaps, to keep our perspective or practice gratitude for the collection of small, warm moments we are gifted to share with others, because eventually the people we love are going to leave us—and no matter when that is, no matter how long we’ve had to prepare—it’s going to be too soon.

John Rybicki, When All the World is Old, Lookout Books, 2012: $13.50 (direct)/$16.95.

***

Kirsten Clodfelter holds an MFA from George Mason University. Her writing has been previously published in The Iowa ReviewBrevity, and Narrative Magazine, among others. A Glimmer Train Honorable Mention and winner of the Dan Rudy Prize, her chapbook of war-impact stories, Casualties, was published this October by RopeWalk Press. Clodfelter teaches in Southern Indiana, where she lives with her partner and their awesome, hilarious daughter. KirstenClodfelter.com, @MommaofMimo

Good News About Breast Cancer? Not So Fast …

While this is not a real campaign, it represents the pinkwashing dilemma: does supporting breast cancer research make up for toxic products? Ad and caption from Johanna Björk's excellent essay on pinkwashing at http://www.goodlifer.com/2010/10/pink-ribbons-pink-products-pinkwashing/; reproduced by permission.

I’ve written about cancer previously in these pages. In Against Medical Advice, I recounted what I learned when someone I loved (I called her Bonnie) was diagnosed with breast cancer. In Poisoned, I traced Bonnie’s and my efforts, once her treatment was over, to identify the root causes of our cancer epidemic and comprehend why forty years of the “War on Cancer” have failed to dramatically reduce cancer rates. Finally, in Not Your Median Patient, I paid tribute to my two of my scientific idols, evolutionary biologist Stephen Jay Gould and climate scientist Stephen Schneider, who applied their own scientific expertise and methods to understanding and fighting their own cancer.

One organization I commended in “Poisoned” was Breast Cancer Action for their efforts to eliminate the root causes of cancer in our environment. BCA’s seminal Think Before You Pink™ campaign urges consumers to resist buying pink-ribbon products from companies that actually worsen the cancer epidemic. BCA has recently stepped up their outreach, including a new blog and an informative monthly webinar series. For example, I learned in this month’s webinar that National Breast Cancer Awareness Month (NBCAM) was co-founded by the American Cancer Society and the pharmaceutical division of Imperial Chemical Industries. ICI is now part of pharmaceutical giant AstraZeneca, which manufactures not only several breast cancer drugs but also the herbicide Acetochlor, a known carcinogen, thus profiting from both causing and alleviating cancer.

So I’m pleased today to reprint an essay by BCA’s communications manager, Angela Wall, about the need to go beyond breast cancer “awareness” (as if we’re not already aware of breast cancer) to identify and eliminate the toxins that cause it. If the beginning of wisdom is to call things by their right names, as the Chinese proverb says, then calling NBCAM “Breast Cancer Industry Month” is wise indeed. My thanks to Ms. Wall and BCA for permission to reprint her essay here.

Good News? Not So Fast …
By Angela Wall

Good news on breast cancer, says Sadie Stein writing for Jezebel. Why? Well, because of pink ribbon awareness campaigns more women are getting screened and diagnosed earlier. Hold on. Does this ring false to anyone else?

Awareness only got them to make a screening appointment to detect the cancer that was already developing.

Ordinarily, I celebrate an article that tacitly suggests that we’ve had enough pink awareness. I’d certainly celebrate the end of the pink noise and hypocrisy that accompanies breast cancer industry month because then instead of having our attention distracted by pink awareness campaigns, we could all start addressing the real issues that increase our risk of developing breast cancer and we might actually be able to focus on reducing diagnoses rather than celebrating them.

I doubt that’s going to happen though. There’s too much money to be made every October from slapping a pink ribbon on a product. Plus and the feel good rewards that accompany  pink ribbons can really boost a company’s image regardless of whether or not the product being sold actually contributes to breast cancer. Heaven forbid we make consumers aware that the products they are purchasing actually contain ingredients that might cause cancer. Awareness apparently doesn’t need to go that far. It’s no surprise then that awareness never prevented anyone from developing breast cancer.

Awareness campaigns have never addressed why more white women get diagnosed with breast cancer but more women of color die from it. Awareness and pink ribbon campaigns have only ever distracted us. Awareness campaigns don’t demand we demand tighter state and federal regulations around the manufacturing and production of cancer causing chemicals or their being included as “ingredients” in the products we use to clean our homes.

I’ve never seen anything to celebrate about breast cancer and I certainly get deeply troubled by the idea that we might have done enough simply because people are being screened more regularly even though more cancer is being detected. Surely, screening rates are only to be celebrated when fewer people receive a cancer diagnosis.

I would agree that awareness has served its purpose. Now it’s time to demand that chemical corporations stop manufacturing products known to cause cancer. I would celebrate if Eli Lilly announced that they were stopping production of their cancer-linked recombinant bovine growth hormone (rBGH), which contaminates a third of US dairy products. I would celebrate if the FDA declared that rather than meeting with Roche Pharmaceuticals to reconsider approving Avastin as a treatment for metastatic breast cancer (despite evidence demonstrating that it doesn’t work), they refined their approval guidelines and insisted that treatments cost less, do more than existing options, and improve the quality of life of women with breast cancer who take them. So I think I’ll hold off on my celebrating if nobody minds until the studies start to show real systemic changes are reducing breast cancer diagnoses over the long term.

FRIDAY POETRY SERIES PRESENTS: BEN MIROV


BLUE BLUE IS THE SKY ABOVE THE LABOR OF FIELDS
by BEN MIROV

Blue blue is the sky above the labor of sailors…
– Tristan Tzara

I am interested in things Tristan Tzara would say. I can write a poem a day and no one is looking. I give one of them my favorite shirt. The other I kiss and kiss with one earphone. It gives me a power I can only describe as flakes. Some chicken falls on the carpet. I forget. Too much computer time. There are shadows in my head with breasts. Come see my “roof.” Trees are in the sky and a basilica. I am interested in the things Tristan Tzara could say. No one home. We tell each other nothing about ourselves and go home happy. There’s no point in coffee. I was never in love with your cat. I never come to this bar. We buy two tall-boys and chips. She grows quiet and dances badly. I vow once again to never return. Something pulls me to bed. People are waiting for me on the other side. My secret is house music. I intend to become myself.

SAMPLE EDITS

We work in a room with the blinds down. You can eat pizza all the time. I remember swimming in the ocean with her. I pass a yellow cable over the coffee. Two weeks and she touched me there. Coming from the East Bay is thinking time. I won’t run into you. Promises about feelings are turquoise. Cigarettes are tiny men, not women. I bet you’re cold. We make-out against some graffiti. Poems can’t be typed. Other times, I wonder what he’s like in bed. I buy noodles at midnight. Couples on the street piss me off, then make me happy. What’s your trick for going to sleep.

Reprinted with permission from Ben Mirov.

BEN MIROV lives in New York. He is editor of paxjournal.com. Sometimes he blogs at isaghost.blogspot.com. His email is benmirov@hotmail.com. He would like to thank his headphones and tacos for saving his life.

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.

Poisoned

Breast Cancer Action's "Think Before You Pink" logo

Breast Cancer Action's "Think Before You Pink™" campaign cautions consumers to resist buying pink-ribbon products from companies that worsen the cancer epidemic. Source: Breast Cancer Action.

Poisoned
By John Unger Zussman

When Bonnie was diagnosed with breast cancer almost two years ago, she was unwilling to chalk it up to random chance. She took it personally. “I wasn’t unlucky,” she said. “I was poisoned.”

Last month, I wrote about Bonnie (a pseudonym), her decisions about cancer treatment, and what I learned from watching her make them. Bonnie and I both appreciate the support, comments, and stories you shared after that post. Now I want to talk about what we learned from her quest to find out who, or what, poisoned herlike an infected film-noir heroine who has just 24 hours to identify the poison, catch the culprit, and find the antidote.

It was in 1971 that President Nixon declared war on cancer, one of the few actions of his presidency that I applauded. Since then, many billions of dollars have been spent and millions of lives lost. We now have innumerable new treatments touted as “cures” for cancer. Yet cancer is still prevalent and survival rates have improved only slowly if at all (much of the decrease is attributable to reduced smoking and earlier detection). Post-menopausal breast cancer in particular is now common, and Bonnie is a member of a large and ever-growing community.

In my opinion (and Bonnie’s), the war on cancer has been undermined, like many wars, by a failure to cast the mission correctly. It placed all its reliance (and budget) on screening and treatment, on detecting cancers early and on finding a “cure.” And although it’s laudable to “race for the cure,” at some point you’ve got to wonder what is causing all this cancer.

But causation gets very little attention, probably because there’s a lot of money to be made in screening and treatment, but not so much in prevention.

How do we prevent cancer? An obvious place to start is our lifestyle, especially diet and exercise. The American diet is overloaded with fat, salt, and high-fructose corn syrup. We pig out on fast food and snack food while we sit on the couch watching “The Biggest Loser” and ignore the treadmill in the corner. Obesity is at record levels and increasing.

So is our diet predisposing us to cancer? Studies are suggestive. As Nicholas Kristof points out in a New York Times column called “Cancer from the Kitchen?,” most women living in Asia have low rates of breast cancer. But ethnic Asian women born and raised in the U.S.—including the daughters of Asian immigrants—have higher rates.

In a recent book called Anticancer, David Servan-Schreiber talks about the “terrain” of the body as being more or less hospitable to cancer. The idea is that cancer cells need a certain environment in which to flourish, and there are things we can do to make that more or less easy for them. For example, the antioxidants in certain fruits and vegetables, such as green tea, cabbage, and pomegranate juice, seem to antagonize cancer cells. “Eat your veggies,” it turns out, was not just maternal nagging.

This is not to say that green tea will cure cancer, and in fact, early studies of the impact of diet on breast cancer survival produced only mixed results. But a recent comprehensive study of diet and exercise—the Women’s Healthy Eating and Living (WHEL) study—was more definitive. For survivors of early-stage breast cancer, eating at least five servings of vegetables and fruits a day, and walking briskly for 30 minutes, six days a week, cut their risk of death from breast cancer by 50%! This should have made headline news—and would have if a drug company could have patented it.

(The link above is a summary, or you can read the actual journal report here.)

Now, Bonnie’s diet has always been reasonable. She hasn’t eaten fast food for 20 years, eats minimal snack food, and isn’t obese. Since her diagnosis, she eats more vegetables (especially the “anticancer” cruciferous ones like broccoli, cauliflower, and cabbage), less meat, little processed food, and no soda. This is far from being a burden. Bonnie’s a terrific chef, and the new meals are delicious.

But in her quest to prevent a recurrence or metastasis, Bonnie is focusing on a more insidious cause of cancer—carcinogens in our environment.

This is not just her opinion. It is shared by the 2009 report of the President’s Cancer Panel, which was released last month. (The link above is to the full, 200-page report. You can also read commentaries on it in another Nicholas Kristof column or in a Huffington Post article by Alison Rose Levy.)  Here is a sampling of the panel’s findings:

  • “A growing body of research documents myriad established and suspected environmental factors linked to genetic, immune, and endocrine dysfunction that can lead to cancer and other diseases.”
  • “Only a few hundred of the more than 80,000 chemicals in use in the United States have been tested for safety.”
  • “Weak laws and regulations, inefficient enforcement, regulatory complexity, and fragmented authority allow avoidable exposures to known or suspected cancer-causing and cancer-promoting agents to continue and proliferate in the workplace and the community…. Many known or suspected carcinogens are completely unregulated.”

Why is our world filled with toxic chemicals? Because it’s profitable. Because the corporations that put them there do not want to be troubled to clean up their mess. And neither do the legislators they bankroll.

What kind of chemicals are we talking about? Since we’re talking about diet, let’s start there. Commercially processed food—in additional to its fat, salt, and high-fructose corn syrup content—is full of additives, preservatives, artificial colorings, hormones, antibiotics, and pesticide residues. This is a result of our “modern” food system, which over the past 50 years has replaced family farms and conventional farming methods with factory farms, monoculture, overreliance on pesticides and fertilizers. If you have any doubts that mainstream food is poisoning us, check out the Oscar-nominated documentary, “Food, Inc.

But the problem doesn’t end with what’s in the food and the way it’s produced; it’s also how it’s packaged, stored, and cooked. It comes to us in cans and plastic containers that contain bisphenol A (BPA) and leach phthalates and endocrine disruptors. We microwave it in the same plastic containers or cook it in Teflon pans that begin to degrade at cooking temperatures above 500° F. (In the case of microwave popcorn, we get both—the bags contain perfluorooctanoic acid, or PFOA, a known carcinogen related to Teflon.) We are living laboratories for artificial chemicals. Kristof’s column gives a good introduction to some of these toxins.

Now, not all of these chemicals are proved to cause cancer.  But that’s the cancer panel’s point. Since the research hasn’t been done, it only makes sense to be wary of them. We are so concerned that the medications we take be both safe and effective, and the FDA generally takes a hard line at enforcing this. Why aren’t we (and they) equally concerned about food additives?

So, in Bonnie’s quest to transform her diet, the food she eats is almost less important than where it comes from. She now buys the vast majority of her (mostly organic) produce from farmers’ markets, and has found a local farm that raises natural lamb, pork, chicken, and eggs, without added hormones or antibiotics. She thinks it’s essential to avoid factory-farmed anything, since mass farming techniques use so many questionable chemical additives. She abandoned her non-stick skillet, bought glass containers for storage, and microwaves food in a Pyrex pie plate.

And she’s found that she has to be eternally vigilant. Tricks and traps are everywhere. For example, “fresh” orange juice from cartons, according to Alissa Hamilton, author of Squeezed: What You Don’t Know About Orange Juice, may have been picked and squeezed months earlier. It’s stored without oxygen, and then flavored with synthetically produced “flavor packs” produced by fragrance manufacturers. The manufacturers don’t have to label these additives because they’re made from orange byproducts.

But toxins aren’t just in food and our kitchen utensils; they’re also in our air, our water, our cosmetics, at work, and at home—they even find their way into newborn babies.  As the Cancer Panel points out:

“To a disturbing extent, babies are born ‘pre-polluted.’ … [They] can be exposed to toxins in utero via placental transfer and/or after birth via breast milk. Tests of umbilical cord blood found traces of nearly 300 pollutants in newborns’ bodies, such as chemicals used in fast-food packaging, flame retardants present in household dust, and pesticides.”

The study they cite was conducted by the Environmental Working Group, one of the premier groups working to remove toxins from our environment. You can hear more about it in a recent address to the Commonwealth Club of California by Kenneth Cook, EWG’s president.  You can listen to it for free here , or download it as a podcast here or from iTunes.

It’s essential to become smarter, toxin-avoidant consumers, and the EWG website offers abundant helpful information.  For example, you can find a series of tips for making your home a healthier place.

Companies that pollute the environment with carcinogens are particularly insidious when they present themselves as green—or pink. Breast Cancer Action, a small but effective activist organization, has focused on this “pinkwashing” problem with a campaign called “Think Before You Pink” It urges consumers to resist buying pink-ribbon products from companies that actually worsen the cancer epidemic.

A recent and egregious example of pinkwashing is KFC who, in partnership with Susan G. Komen for the Cure, is now selling pink buckets of factory-farmed, fat-laden fried chicken to “cure breast cancer.” We expect this kind of deception from KFC, but the Komen foundation should know better.  You can tell them to stop by sending a message from BCA’s site—and by not patronizing this product.

Since BCA first criticized the KFC/Komen partnership, outrage about the hypocrisy has gone viral. It was featured on The Colbert Report and has been roundly criticized by bloggers like John Robbins.

BCA successfully persuaded General Mills to stop putting the bovine growth hormone rBGH, a known carcinogen, in Yoplait yogurt. They are now trying to get Eli Lilly to stop manufacturing rBGH at all. Unlike other breast cancer organizations, they accept no donations from pharmaceutical companies, health insurers, or other companies whose products are involved in cancer diagnosis or treatment. They also accept no money from chemical manufacturers, oil or tobacco companies, or others who might possibly contribute to cancer incidence.

As Bonnie says, there are no certainties in life or cancer. No one can guarantee that eating organic food will keep you cancer-free. Bonnie relies on Western medicine and the guidance of doctors who are trained in it.

But she is not going to sit back and simply wait for them to cure her. She is also doing everything she can to strengthen her immune system and keep herself healthy. And that involves eating right, exercising, avoiding toxins, and supporting organizations that are trying to remove them from our environment. Nothing about this cancer epidemic is going to change unless we become proactive. Bonnie’s message to you is: Don’t wait until you get cancer to take responsibility for your own health.

Let me repeat the disclaimer from last month’s post: I am not a medical doctor, so my reflections are meant to be descriptive and not prescriptive. I wouldn’t pretend to tell anyone else what to do. Again, I invite your comments and, especially, your own stories.

My thanks to “Bonnie” for her input and inspiration.

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

Resources and Notes:

David Serban-Schreiber, MD, PhD, Anticancer: A New Way of Life (2008).

Keith I Block, MD, Life Over Cancer: The Block Center Program for Integrative Cancer Treatment (2009).

Rick Smith & Bruce Lourie, Slow Death by Rubber Duck: The Secret Danger of Everyday Things (2009).

Food, Inc. (documentary written and directed by Robert Kenner, 2008)

President’s Cancer Panel 2008-09 Annual Report, Reducing Environmental Cancer Risk: What We Can Do Now (2010)

Environmental Working Group website

Breast Cancer Action website

Think Before You Pink™ website

Breast Cancer Action’s “Think Before You Pink” campaign cautions consumers to resist “pinkwashing.”

Against Medical Advice

Human pink ribbon 2005

Against Medical Advice
By John Unger Zussman

A woman I’ll call Bonnie sat in the exam room with her husband, waiting for her oncologist. They held hands without speaking, wearing thin, brave smiles.

(I’ve given Bonnie a pseudonym, and refrained from identifying my relationship to her, out of respect for her privacy. Suffice it to say we are close.)

Three months earlier, after a suspicious mammogram, a biopsy came back positive. Bonnie had a malignant breast tumor.

The diagnosis was a shock to Bonnie, who had no history of cancer in her family. She had to learn to cope with her brand-new reality. But watching someone I love face cancer set off land mines in my brain. My father died from rhabdomyosarcoma at age 35, when I was ten; my sister died of breast cancer at 45. My mother survived breast cancer in her 30s and spindle-cell sarcoma in her 70s, just after my adoptive father (her second husband) was treated for prostate cancer.

So I lived with a sword hanging above my head, expecting that someday I’d have to face that diagnosis myself. Once, my doctor’s office left a message on a Friday asking me to repeat a Hemoccult test. I spent an angst-filled, sleepless weekend convinced I was dying of colon cancer. It turned out that only one of the three samples had read positive—a fairly common occurrence—and the retest came out normal. Still, cancer is my demon, and Bonnie’s cancer let it loose.

The doctors put Bonnie through an exhausting battery of X-rays, MRIs, and CT scans to find out how much it might have spread. Meanwhile Bonnie worked her way through denial, anger, and depression, the first three stages of grief. She scoured the Internet medical sites and joined her local breast cancer support center.

After all the test results were in, her surgeon arranged for her to appear before the tumor board at his hospital, a celebrated university cancer center. First, a group of surgeons and oncologists came in to examine her. “It was strange, sitting there,” Bonnie’s husband said later, “as that parade of medical people took turns feeling her up.” Then she waited while the doctors reviewed her case.

Finally, they met with the hospital’s top breast cancer expert. He presided over the tumor board and was to be her oncologist.

“We’ve reviewed your case,” he told Bonnie, “and we all agree. If your surgery goes as we expect, you’re going to go through six months of hell. But then you’ll be fine.” Although the tumor was small, he explained, it was an aggressive type and might have spread to her lymph nodes. She would probably need radiation followed by chemotherapy.

Bonnie looked at her husband uneasily. She dreaded the thought of radiation and chemo, which had taken a physical and emotional toll on every breast cancer patient she knew.

As Bonnie’s lumpectomy date approached, she moved on to bargaining. Her research said that if her lymph nodes were not affected—that is, if she had stage 1 cancer— she would probably need no chemo, maybe not even radiation. And the less stress she subjected her body to, the better.

Bonnie’s hopes were fulfilled when the surgeon brought good news. She had caught it early. The tumor was small, the surgical margins were clear, and no lymph nodes were affected. Her cancer was only stage 1, and the surgeon was confident he had gotten it all.

Relieved, she settled into acceptance. And now, a few weeks later, she and her husband looked up as her oncologist entered her exam room and sat down. He congratulated her on her successful surgery and her positive test results.

And then he dictated a full course of radiation followed by aggressive chemotherapy.

This wasn’t what Bonnie had bargained for. She questioned him, but he was relentless. He couldn’t be sure that some cancer cells hadn’t escaped or that they wouldn’t metastasize. And that’s what you really want to avoid, he said. When she continued to resist, especially the chemo, he became defensive. “Why are we having this conversation if you’ve already made up your mind?” he demanded. He wasn’t used to mere patients questioning his authority.

Finally, Bonnie asked directly, “What if I go without chemo?”

“It’s risky,” he replied, “I wouldn’t recommend it.”

“What if I skip radiation?”

“I’ll strap you to the table.”

Bonnie doesn’t cotton to being told what to do. “I don’t believe in hell,” she said later. She quickly regressed back to anger—and stayed there.

The first thing she did was fire her oncologist. She couldn’t believe the good results had not altered his treatment plan even a millimeter. “I want a doc who’ll treat me, not my cancer,” she said.

I tried to be supportive, but challenging medical authority is not my nature. I didn’t even know you could fire your oncologist. I wanted her to explore every avenue, use every medical weapon to beat this disease. Foregoing further treatment seemed a great risk, tempting fate, taking a chance with her life. Of all my fears, this was the oldest and most devastating. Bonnie’s cancer unleashed my demons and awakened my nightmares.

Bonnie stepped up her research and sought a second opinion. She also got access to a website, widely used by medical professionals, that estimates the risk of breast cancer relapse and mortality based on characteristics of the patient, her tumor, and potential chemotherapy.

And when she described that research, to my surprise, it was my mind that began to change. Bonnie’s prognosis was good no matter what she did. Radiation would cut the chance of recurrence, but it would have no effect on her survival and might cause long-term heart damage. Chemo would increase her chance of survival by a few percent, but she would be flooding her system with poisons that would cause nausea, hair loss, and the possibility of long-term cognitive and systemic impairment. That made her decision easy: no radiation, no chemo.

Her surgeon, whom she liked and trusted, tried to dissuade her. “What will happen,” he asked, “if the worst happens and you get a recurrence or even a metastasis? How will you feel then? Won’t you regret this?”

“Not for a minute,” she said without hesitation.

We often talk about patients waging a “courageous battle with cancer.” This usually means they try every means available, suffer every side effect, in the attempt to conquer their disease. But it also takes courage to forego treatment—to understand the odds and trust them, to know your own body and what’s best for it, to realize that, for you, the treatment might be worse than the disease.

Most cancer professionals are courageous too, and dedicated. They take their best shot and watch their patients die and then have to come back the next day and do it all again. It’s no wonder that they want to use every possible tool to beat this damn disease.

So they develop a standard treatment and apply it across the board. No doubt this is partly dictated by insurance and liability concerns. “Radiation? Of course you want radiation. It reduces the risk of recurrence by 40% or more.” But when that risk is low to begin with, when it doesn’t increase your chance of survival, and when you add the risks of radiation itself—the choice is far from obvious. Women need the option to make their own decision.

In the end, ironically, it’s not the oncologists’ job to cure cancer. Their job is to treat their patients—and it’s not the same thing.

Twenty-one months later, Bonnie is both healthy and steadfast, without a moment of doubt or regret. The odds are in her favor. I try not to second-guess her, even if I know that disaster might lurk in every screening exam and mammogram, even if just writing these words seems like tempting the gods. It’s her body and her decision, not her doctor’s.

The health care establishment and the breathless media sometimes tout new treatments as medical miracles. But they have risks and cause damage, which have to be weighed against their benefits. I hope to explore this calculus in future posts, and explore what it’s taught me about medicine and the state of our culture. I’ll also describe the ways Bonnie has chosen to manage her risk of recurrence and metastasis. She is not going gentle unto that good night.

Please note that I am not a medical doctor (nor do I play one on TV), so my reflections are meant to be descriptive and not prescriptive. I wouldn’t pretend to tell anyone else what to do. I invite your comments and, especially, your own stories.

Shortly after Bonnie made her decision, she learned that her original oncologist was running a clinical trial with, coincidentally, the same chemo medications he prescribed for Bonnie.

By that time, Bonnie had found a new oncologist. He gives her options, not orders.

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

Against Medical Advice By John Unger Zussman   A woman I’ll call Bonnie sat in the exam room with her husband, waiting for her oncologist. They held hands without speaking, wearing thin, brave smiles.    (I’ve given Bonnie a pseudonym, and refrained from identifying my relationship to her, out of respect for her privacy. Suffice it to say we are close.)   Three months earlier, after a suspicious mammogram, a biopsy came back positive. Bonnie had a malignant breast tumor.    The diagnosis was a shock to Bonnie, who had no history of cancer in her family. She had to learn to cope with her brand-new reality. But watching someone I love face cancer set off land mines in my brain. My father died from rhabdomyosarcoma at age 35, when I was ten; my sister died of breast cancer at 45. My mother survived breast cancer in her 30s and spindle-cell sarcoma in her 70s, just after my adoptive father (her second husband) was treated for prostate cancer.    So I lived with a sword hanging above my head, expecting that someday I’d have to face that diagnosis myself. Once, my doctor’s office left a message on a Friday asking me to repeat a Hemoccult test. I spent an angst-filled, sleepless weekend convinced I was dying of colon cancer. It turned out that only one of the three samples had read positive—a fairly common occurrence—and the retest came out normal. Still, cancer is my demon, and Bonnie’s cancer empowered it.   The doctors put Bonnie through an exhausting battery of X-rays, MRIs, and CT scans to find out how much it might have spread. Meanwhile Bonnie worked her way through denial, anger, and depression, the first three stages of grief. She scoured the Internet medical sites and joined her local breast cancer support center.   After all the test results were in, her surgeon arranged for her to appear before the tumor board at his hospital, a celebrated university cancer center. First, a group of surgeons and oncologists came in to examine her. “It was strange, sitting there,” Bonnie’s husband said later, “as that parade of medical people took turns feeling her up.” Then she waited while the doctors reviewed her case.   Finally, they met with the hospital’s top breast cancer expert. He presided over the tumor board, and was to be her oncologist.    “We’ve reviewed your case,” he told Bonnie, “and we all agree. If your surgery goes as we expect, you’re going to go through six months of hell. But then you’ll be fine.” Although the tumor was small, he explained, it was an aggressive type and might have spread to her lymph nodes. She would probably need radiation followed by chemotherapy.    Bonnie and looked at her husband uneasily. She dreaded the thought of radiation and chemo, which had taken a physical and emotional toll on every breast cancer patient she knew.    As Bonnie’s lumpectomy date approached, she moved on to bargaining. Her research said that if her lymph nodes were not affected—that is, if she had stage 1 cancer— she would probably need no chemo, maybe not even radiation. And the less stress she subjected her body to, the better.   Bonnie’s hopes were fulfilled when the surgeon brought good news. She had caught it early. The tumor was small, the surgical margins were clear, and no lymph nodes were affected. Her cancer was only stage 1, and the surgeon was confident he had gotten it all.   Relieved, she settled into acceptance. And now, a few weeks later, she and her husband looked up as her oncologist entered her exam room and sat down. He congratulated her on her successful surgery and her positive test results.   And then he dictated a full course of radiation followed by aggressive chemotherapy.    This wasn’t what Bonnie had bargained for. She questioned him, but he was relentless. He couldn’t be sure that some cancer cells hadn’t escaped or that they wouldn’t metastasize. And that’s what you really want to avoid, he said. When she continued to resist, especially the chemo, he became curt. “Why are we having this conversation if you’ve already made up your mind?” he demanded. He wasn’t used to mere patients questioning his authority.   Finally, Bonnie asked directly, “What if I go without chemo?”    “It’s risky,” he replied, “I wouldn’t recommend it.”    “What if I skip radiation?”    “I’ll strap you to the table.”   Bonnie doesn’t cotton to being told what to do. “I don’t believe in hell,” she said later. She quickly regressed back to anger—and stayed there.    The first thing she did was fire her oncologist. She couldn’t believe the good results had not altered his treatment plan even a millimeter. “I want a doc who’ll treat me, not my cancer,” she said.   I tried to be supportive, but challenging medical authority is not my nature. I didn’t even know you could fire your oncologist. I wanted her to explore every avenue, use every medical weapon to beat this disease. Foregoing further treatment seemed a great risk, tempting fate, taking a chance with her life. Of all my fears, this was the oldest and most devastating. Bonnie’s cancer unleashed my demons and awakened my nightmares.   Bonnie stepped up her research and sought a second opinion. She also got access to a website, widely used by medical professionals, that estimates the risk of breast cancer relapse and mortality based on characteristics of the patient, her tumor, and potential chemotherapy.   And when she described that research, to my surprise, it was my mind that began to change. Bonnie’s prognosis was good no matter what she did. Radiation would cut the chance of recurrence, but it would have no effect on her survival and might cause long-term heart damage. Chemo would increase her chance of survival by a few percent, but she would be flooding her system with poisons that would cause nausea, hair loss, and the possibility of long-term cognitive and systemic impairment. That made her decision easy: no radiation, no chemo.    Her surgeon, whom she liked and trusted, tried to dissuade her. “What will happen,” he asked, “if the worst happens and you get a recurrence or even a metastasis? How will you feel then? Won’t you regret this?”   “Not for a minute,” she said without hesitation.    We often talk about patients waging a “courageous battle with cancer.” This usually means they try every means available, suffer every side effect, in the attempt to conquer their disease. But it also takes courage to forego treatment—to understand the odds and trust them, to know your own body and what’s best for it, to realize that, for you, the treatment might be worse than the disease.   Most cancer professionals are courageous too, and dedicated. They take their best shot and watch their patients die and then have to come back the next day and do it all again. It’s no wonder that they want to use every possible tool to beat this damn disease.    So they develop a standard treatment and apply it across the board. No doubt this is partly dictated by insurance and liability concerns. “Radiation? Of course you want radiation. It reduces the risk of recurrence by 40%.” But do the math. When that risk starts at 5%, when radiation reduces that risk (by 40% of 5%) to 3%, when it doesn’t increase your chance of survival, and when you add the risks of radiation itself—the choice is far from obvious. Women need the option to make their own decision.   In the end, ironically, it’s not the oncologists’ job to cure cancer. Their job is to treat their patients—and it’s not the same thing.    Twenty-one months later, Bonnie is both healthy and steadfast, without a moment of doubt or regret. The odds are in her favor. I try not to second-guess her, even if I know that disaster might lurk in every screening exam and mammogram, even if just writing these words seems like tempting fate. It’s her body and her decision, not her doctor’s.    The health care establishment and the breathless media sometimes tout new treatments as medical miracles. But they have risks and they cause damage, which have to be weighed against their benefits. I hope to explore this calculus in future posts, and explore what it’s taught me about medicine and the state of our culture. I’ll also describe the ways Bonnie has chosen to manage her risk of recurrence and metastasis. She is not going gentle unto that good night.   Please note that I am not a medical doctor (nor do I play one on TV), so my reflections are meant to be descriptive and not prescriptive. I wouldn’t pretend to tell anyone else what to do. I invite your comments and, especially, your own stories.   Shortly after Bonnie made her decision, she learned that her original oncologist was running a clinical trial with, coincidentally, the same chemo medications he prescribed for Bonnie.   By that time, Bonnie had found a new oncologist. He gives her options, not orders.