Cancer

Ignoring the big C

Cancer will kill more than half a million Americans this year. Scientists are desperate to find cures, but weak federal funding and high research costs driven by private-company greed are crippling their efforts.

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Ignoring the big C

The latest artillery in the war on cancer waits, ready for action, in Dr. Susan Mallery’s Ohio State laboratory: the map of the human genome, biological compounds, and all the molecular know-how to take direct aim at a prolific killer. Armed with medical science’s newest precision weapons, Mallery is edge-of-her-seat eager to test a novel way to prevent head and neck tumors from recurring. But for now, her research lacks one thing. The drug. A California for-profit company that sells the experimental compound, a protein called Endostatin, is effectively holding it hostage at $572 per milligram. Mallery and her colleagues need enough of the drug to test it in a time-release model. The experiment requires a gram — about three tablespoons — which will cost $572,000.

“They pretty much have you by the jugular,” Mallery says of the cancer capitalists. “This isn’t something you can just whip up in a back-lab garage.”

In its best and purest form Endostatin can cost as little as $1.36 per milligram, or $1,363 per gram, when manufactured in bulk by industry for tests in humans, says Dr. Judah Folkman of Children’s Hospital Boston, whose lab discovered the protein’s potential to block the growth of some tumors. The research-grade Endostatin sold commercially by San Diego’s EMD Biosciences, is unfit for humans. It’s a lower-grade product made in smaller quantities for preliminary tests in animals and cell cultures — and can be so inexpensive to make that biotech companies have given it away when scientific experiments promise to eventually generate profits.

At the moment Mallery is talking with Alchemgen Therapeutics, in Houston, about just such a deal. But typically, when scientists like Mallery first attempt to hatch cures without industry sponsorship, they are at the mercy of the free market. Society be damned.

Mallery’s early research shows that Endostatin might even inhibit Kaposi’s sarcoma, the most common AIDS-related cancer, made notorious by Tom Hanks’ character in the movie “Philadelphia.” “But it’s not like baking cake: add a pinch of this and a pinch of that. You have to try a bunch of controlled-release formulations,” Mallery says. “It’s not that you can’t get Endostatin. You can buy it, but it is ungodly.”

EMD Biosciences, a boutique seller of compounds used in disease research, would not explain the wildly steep price difference between human- and animal-grade Endostatin. “There is a list of things you are not supposed to tell anybody,” says Cyndy Lane, the company’s product manager.

Steve Schwendeman, a University of Michigan chemist collaborating with Mallery, shrugs it off. Price gouging in wartime is not unusual. “It is not a problem unique to Endostatin,” he says. “This is a problem that goes throughout our industry.”

Declared by Congress three decades ago, the “war on cancer” is today farmed out to 181 drug and biotech companies whose existence depends on profits and investments. Leading cancer scientists in academia and government say their pursuit of the enemy is increasingly shackled to stock quotes, aggressive patent strategies, tightly held trade secrets and the legal wrangling over the spoils of success: more than $60 billion in yearly revenue, according to admittedly “lowball” estimates by the National Cancer Institute.

“I recognize a pharmaceutical company’s need to make back money, but the bottom line is we’re trying to cure cancer,” says Howard Hughes Medical Institute scientist Dr. Brian Druker, who helped discover the cancer drug Gleevec. “Our priorities are wrong when the goal becomes, Let’s make money first, and if it happens to help the health of the population, then good.”

While 1,500 Americans die daily from cancer, scientists are being forced to drag their feet rather than run to the cures they suspect are within reach of today’s newest science. That is the conclusion drawn from an examination of hundreds of patents and lawsuits, and from interviews with more than 40 scientists, stockbrokers, senators, professors, patients, industry executives and government officials. The current fight is not the war that Washington promised. Not even close.

In 2004, cancer will kill 10,000 Americans under the age of 40; about 1,000 will be children age 9 or younger. If Washington truly wanted to wage war on cancer we could do it, and the first obvious step would be to increase funding for the front-line troops. Right now, drug and biotech companies are investing about $6 billion a year in cancer research, according to Fortune magazine. That’s $1.2 billion more than the annual budget for the National Cancer Institute, the government’s lone deep pocket for cancer science, and $5 billion more than all the major charities combined. A few billion dollars more each year could make a huge difference, saving thousands of lives.

In the last 18 months, taxpayers have given $120 billion to a different war: the invasion and consequent reconstruction of Iraq. By the end of next year, that figure is expected to top $200 billion. That’s about three times the total amount given to the NCI by Congress during the 33 years of the war on cancer.

Cancer victims, scientists and the public at large are asking for funding more on a par with a real war. In a USA Today poll published on the front page in 1998, nearly nine in 10 adults surveyed said they would be willing to pay more taxes if the money went toward research for a cancer cure. Four years earlier, Sens. Tom Harkin of Iowa and Mark Hatfield of Oregon had proposed legislation for a 1 percent tax on health insurance premiums to create a medical research trust fund to subsidize disease research. Insurance lobbyists defeated it.

Last year, in a bipartisan survey of 1,000 Americans conducted by pollsters who have worked for President Bush and former Vermont Gov. Howard Dean, cancer ranked as the public’s greatest fear, greater than AIDS, heart disease, car accidents or even acts of terrorism. Two-thirds favored adding billions of dollars each year to the NCI budget; about half wanted to double or triple its budget.

“There is an epidemic of cancer in this country and we are doing damn little about it in the way of public funds,” says Hamilton Jordan, a cancer survivor and chief of staff in the Carter White House. “There is no way to understand it or to justify it.”

With substantial government investment, scientists say, more research proposals — like Mallery’s — would be publicly funded and owned; there could be additional patent and financial incentives for research on the hundreds of minor cancers that go ignored because little is offered in the way of profit; the veils of secrecy that hide clinical trials from the public would be lifted, allowing for the recruitment of more trial patients; and scientific collaboration could be the standard rather than the exception.

Simply, if science were loosed from Wall Street’s leash, its assault on cancer might rain down like bombs on Baghdad.

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Science’s advance on cancer is notoriously slow. That’s why, in 1971, a war on it was launched from the nation’s capital with a political promise of victory by the U.S. bicentennial. In 2004, more than a quarter century past that improbable deadline, at least 550,000 Americans will die from cancer, while the age-adjusted death rate from cancer remains only marginally improved from 1970.

Today, the war on cancer is at a crossroads. Armed with the emerging science of the publicly funded Human Genome Project, researchers are examining cancer anew. Cancer was once an umbrella term grouping together what were believed to be 100 to 200 diseases unique for their organ location — lung, liver, breast, prostate. Now it is being redefined, subdivided into vastly more varieties by advanced research.

There may be thousands of cancers distinguishable only by subtle genetic differences, says Howard Hughes scientist Druker. “Each has its Achilles’ heel and we have to identify that Achilles’ heel in every cancer. Imagine if we could very rapidly sequence the genomes of several hundred of each of the common cancers. It might take a long time and cost billions of dollars, but with today’s technology it is possible.”

But after Congress began doubling the National Institutes of Health budget in the late 1990s — and the NCI’s budget for basic science ballooned to vet the early promise of some cancer drugs — industry attached itself like barnacles to cancer research. As companies invested, they claimed proprietary rights to the results of their research. The effect was double-edged: New and expensive cancer drugs offer negligible benefits while the war is weighted down with patent strategies, intellectual property rights and a collective fixation on NASDAQ.

The ruckus that scientists are beginning to raise about the problem is one of a few hopeful signs. The government official who oversees the cancer-war arsenal admits that the conduct of the war is flawed, but says that the very admission is a move in the right direction.

“One has to recognize the problem before taking concrete steps,” says Dr. Richard Pazdur, director of oncology drugs for the Food and Drug Administration. “People are finally talking about this, and people have realized the problem. That is the first step.”

A review of 78 federal court cases dating to 1962 that deal primarily with oncology and the scientific scuffling among researchers, universities and industry found that nearly 80 percent, or 61 cases, have occurred since 1998, indicating that the struggle to control the fruits of research has become substantially more litigious in recent years. More telling, perhaps, is how the tenor of the lawsuits changed in the 1990s. Straightforward claims of patent infringement became crowded with charges of racketeering and intellectual theft.

“It is sometimes hard to decide who is wearing the white and who the black hat,” says Dr. Robert Cook-Deegan, director of Duke University’s Center for Genome Ethics, Law and Policy. “And a lot of folks are trading hats of different shades during the day.”

During their lifetimes, one in two American men and one in three American women will hear the words that staggered Don Chance. “It’s cancer,” a doctor told Chance after removing a lump in his neck. “The darn thing has spread all over the place.”

That was nine years ago and Chance, 52 and in remission today, vividly recalls his response. The knees weakened, his legs splayed, he sat down. “There are two kinds of people in this world: those who have had cancer and those who haven’t,” says Chance, a Louisiana State University professor. “The ones who have had it no longer have to worry about how they will feel when the doctor says those words. It’s nothing you want to hear.”

Chance’s story can be multiplied a million-fold, which might make one think that the search for a cure would be a potent political issue. But so far, there are few signs that the political will to fully wage war on cancer is present in Washington. The Senate’s latest version of the National Cancer Act, a rah-rah piece of legislation mired in committee for two years, doesn’t ask for any wallops in funding. Bill co-sponsor Sen. Sam Brownback, a 48-year-old Kansas Republican, calls cancer “the polio of our era,” but even he says money isn’t the antidote.

“What we need now is a key top-down focus like what [President] Nixon did when he declared war on cancer” in 1971, he says.

Brownback wants Bush to set a date for when cancer will be defeated, like a dare to the cancer-fighting industry. NCI director Dr. Andrew Von Eschenbach says science’s goal is to eliminate “the suffering and death” due to cancer by 2015, but Brownback wants a similar charge — and confidence — from the White House. “I think people would fall in line,” he says. “This would be measurable and time certain … like balancing the budget in seven years.”

Prostate cancer survivor Sen. John Kerry shows his support for cancer research by sporting the mustard-yellow wristband of the Lance Armstrong Foundation, but his office offers few details about how the Democrat from Massachusetts would help if elected president. He would “significantly increase federal funding of cancer research,” says Madhu Chugh, the campaign’s director of healthcare policy, but she gives no particular strategy or dollar amount.

Instead she steers discussion toward the politically charged issue of embryonic stem-cell research, a budding science that holds no immediate promise for cancer fighters. There are currently no FDA trials for any drugs stemming from embryonic stem cells, and no medicines are likely for at least 10 to 15 years.

As for Bush, Brownback says his forays into the West Wing have been mostly ignored. Because George H.W. Bush lost a daughter to leukemia and is on the board of visitors at the University of Texas M.D. Anderson Cancer Center, Brownback long ago discussed with the former president his plans for articulating a stand in the cancer war. But, more recently, the idea “didn’t get much reception with Dubya,” Brownback says.

The priorities of the current administration are clear: The war in Iraq is front and center. The more than 1,000 U.S. soldiers killed there have dominated headlines. Cancer’s assault is far less visceral than the bloodshed in Iraq, but its carnage accumulates at an unfathomably greater clip: Since the beginning of the Iraq war, cancer has killed about 3,500 American children and teenagers.

That’s why, in May, 15-year-old cancer victim Sonia Bawa made a pleading request of President Bush. “Put the war in Iraq on hold for one month so we can double the national cancer research budget,” she wrote on her Web site.

Sonia’s impractical appeal is about priorities — and perspective. Congress spends on average about $6.5 billion per month in Iraq. It gives $405 million per month to the NCI. At least two-thirds of the cancer research proposals that are peer-reviewed and approved by the NIH today don’t receive government funding. The ideas are thrown like chum to the free market — where many sink. Industry doesn’t typically invest unless success is shown in preliminary testing, the expensive pre-clinical animal trials supported by charities and taxpayers.

Companies are charged with assessing risk to stockholders, not patients, explains Wall Street biotech analyst Reni J. Benjamin. “At the end of the day,” he says, echoing other analysts, “the most humanitarian company does no one any good if it is bankrupt.”

There is a paradox inherent in the nature of cutting-edge cancer research and the current, mostly corporate, funding structure. Drug development is an expensive undertaking, and the costs are compounded by cancer’s new targeted therapies. Drugs tailored for specific genetic mutations reduce each drug’s population of patients — and thus the potential for profit. For example, non-small-cell lung cancer kills about 140,000 people in the United States each year, but the targeted drug Iressa benefits only about 10 percent of these patients. So even as the state-of-the-art in cancer cures improves, the chances to make money may be decreasing.

When Druker was developing the cancer drug Gleevec, he had to argue with the industry to push it through the FDA pipeline. Industry executives, worried about the drug’s limited market, wanted to wait for other uses to be discovered before investing in expensive human testing, he recalls. “It was becoming a long, dragged-out affair,” Druker says. “Meanwhile, I had patients in the clinic who were dying.”

Washington offers incentives, such as patent extensions, to companies that develop drugs serving relatively small pools of patients. The FDA’s “orphan” drug designation is meant to entice the industry to invest in cures for rare diseases that might offer little profit. But of the 395 cancer drugs in human trial today, only one, a drug tested on an uncommon type of brain cancer, was designated last year as an orphan. Industry isn’t biting, says Dr. Genie Kleinerman, head of pediatric oncology at the M.D. Anderson Cancer Center.

Kleinerman is still frustrated by her attempts many years ago to test a novel therapy for osteosarcoma, a rare bone cancer that strikes about 900 U.S. children and young adults every year. Her idea was to combine two drugs licensed to rival companies, but she says competing lawyers could never agree to each other’s terms. “It didn’t get off the block. It’s nowhere today,” she says. “You are just never going to change the corporate culture.”

Wall Street analyst Alex Zisson says it’s not industry’s responsibility to play the good guy. Stock investors everywhere are culpable; they expect their companies to compete headlong for profits. “We pay taxes so the NCI can fund humanitarian research,” says Zisson, a New York analyst with Thomas, McNerney & Partners.

Pharmaceutical companies are the nation’s most profitable industry, but drugs on average cost hundreds of millions of dollars to develop and market, and only one in every five that advance to human testing is eventually approved. The risks and expense make patent protection “essential to continued innovation and investment,” says Jeff Trewhitt of the Pharmaceutical Research and Manufacturers Association, the industry trade group based in Washington.

The system works, Trewhitt insists: “Clearly progress is being made in the war when there are so many cancer drugs in clinical testing.”

For example, pharmaceutical giant Pfizer, best known perhaps for Viagra, the erectile-dysfunction blockbuster, is spending 12 percent, or $192 million, of its research-and-development budget on 20 cancer medications. Eight of these compounds have progressed into advanced human trials, where a drug’s efficacy is tested, says Dr. William J. Slichenmyer, the company’s vice president of oncology drug development. Pfizer is drawn by the war’s untapped potential, he says, and “huge unmet need.”

“Despite the progress that has been made, some people still prefer to see the glass as half empty,” Slichenmyer says. “But you could also see it as half full.”

And yet, something appears wrong with the system. The treatment of cancer in the United States generated about $13 billion in revenue in 1980, $27 billion in 1990, and in excess of $60 billion today. In today’s dollars, that’s equal to a doubling in yearly revenue while the decrease in cancer mortality has been incremental.

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Some progress has been made. Several new cancer drugs in the past five years have been shown to extend lives by several months and have raised the hopes of cancer victims. But the rate of progress does not match the evolving potential, Druker says. The hallmark of science is selfless collaboration, but CEOs are required to put the interests of their stockholders first.

Between 1995 and 1997, there were 196 patents issued for cancer-fighting compounds, techniques and devices, according to records at the U.S. Patent and Trademark Office. In the past two years, there has been a piling on: 639 patents and counting.

“We seriously have to rethink what we have done with patenting in this country,” says Druker, who testified before the Senate Cancer Coalition last year about the cancer war’s conflicts and triumphs.

On his first day of work 11 years ago at the Oregon Health and Science University, Druker asked permission to test an obscure compound owned by the Swiss drug company Ciba-Geigy. Within hours an agreement was signed between the university and the company, now Novartis. Druker was soon experimenting with STI-571, the drug that became Gleevec, used today in the treatment of chronic myeloid leukemia and some rare stomach cancers.

“In today’s climate if I could get something like that in my lab within six months I would be extremely pleased,” he says from his Portland office.

In an effort to foster teamwork, the NCI began this spring requiring scientists, universities and industries that use its money to sign collaborative agreements. But the NCI is generally involved in less than 20 percent of the cancer drugs in human trials. Of the 395 cancer drugs in clinical trials this year, the NCI was sponsoring or co-sponsoring 69.

This is at a time when the cross-pollination of cancer science is more important than ever. In the war on cancer, doctors will increasingly rely on combinations of drugs aimed at specific molecular targets, says Dinah Singer, the NCI’s director of cancer biology. “A single drug is unlikely to eliminate a tumor target,” she says. “It takes multiple pathways with multiple drugs.”

It takes a singularly minded army.

Which explains why Sonia Bawa wrote to Bush. If the war on cancer were funded like a real modern war, Druker and his cancer-fighting fraternity would not have to negotiate their every step with business — and profits — in mind. The pursuit of a killer might quicken.

Sonia and Bush exchanged polite letters. They are at an obvious impasse. Meanwhile, Congress this summer approved Bush’s request for $25 billion in emergency funds for military operations abroad.

Former Washington insider Hamilton Jordan, 59 and a survivor of lymphoma, prostate and skin cancers, wants to know where Sonia’s emergency funds are. “I’m baffled as to why this isn’t a political issue,” he says from his home in Atlanta. “It affects so many people that it’s easy for me to imagine a presidential candidate saying, ‘This is cancer week … and it’s the only issue we’re going to talk about.’”

Sonia has battled leukemia, a cancer of the blood, for most of her life. She’s endured chemotherapy, two bone-marrow transfusions and a transfusion of her older brother’s healthy stem cells. She’s very much at war.

When a letter dimpled with the presidential seal arrived one Friday this summer at her home in Fort Collins, Colo., she did what savvy teenagers do today. She scanned Bush’s response onto her Web page.

She then stayed home for the weekend. She had hoped to go to the movies, but her mother didn’t want her in a crowded theater. A girl in the trenches can’t risk catching even a cold.

Greg Barrett is a national correspondent for Gannett News Service based in the GNS/USA Today bureau in Washington, D.C.

Kate Hudson’s cancer horror show

The bubbly actress's horrific movie, "A Little Bit of Heaven," turns terminal illness into a twee joke

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Kate Hudson's cancer horror showKate Hudson in "A Little Bit of Heaven"

Ladies and gentlemen, we are gathered here today to mourn a sad loss. A luminous, unique presence who ably graced our lives and then was snuffed out far too early. A moment of silence, please, for Kate Hudson’s career.

It seems like only yesterday we were beguiled by the lively, bohemian Penny Lane in “Almost Famous.” But it’s been a painful decade since, as I know many of you gathered here can bear witness. Those of you who steadfastly supported Hudson over the years, who paid good money for “Bride Wars,” for “How to Lose a Guy in 10 Days,” for “Raising Helen,” “You Me & Dupree,” “Fool’s Gold,” “My Best Friend’s Girl,” “Alex and Emma,” “Le Divorce,” and “Something Borrowed” — you know what I’m talking about. You’re heroes for sticking around this long. That’s why it’s both tragic and necessary to come to the end of our journey now, to let her go off to a better place. The D-list. It’s called “A Little Bit of Heaven.”

The movie, which opens in theaters Friday and is available on demand on iTunes, tells the story of Marley, a free-spirited young New Orleans advertising executive. Marley has good friends — including a pregnant lady and a gay black man, because she’s awesome. She has an adorable dog and a penchant for casual sex and whimsical bike riding. But no sooner can her pals offer a champagne toast celebrating the “youngest and hottest vice president” in her company’s history than things start to go terribly wrong. Like millions of helpless white people every day, Marley begins having visions of a cool African-American as God. There is no known cure. Once Marley starts chatting with Whoopi Goldberg in that ethereal, cloud-heavy set, you know she’s in trouble. She’s got terminal Movie Cancer. Naturally, this is the perfect opportunity for her to get in touch with her feelings, have many scenes of hugging her crying costars, and start banging Gael García Bernal. It’s a little weird because he’s supposed to be her oncologist.

It’s not easy making entertainment out of cancer. Yet Showtime’s “The Big C” has mined the terrain to Golden Globe-winning effect. Llast year’s “50/50,” based on writer Will Reiser’s real experiences as a young person suddenly diagnosed with a potentially fatal diagnosis, became a critically acclaimed sleeper hit.  And when you’ve got a condition that will directly affect roughly 41 percent of us, there’s surely some dramatic and comedic resonance to be found in the subject matter. Speaking as someone who has had Stage 4 cancer and endured a clinical trial, and who believes firmly that anyone who’s been through all that ought to at the very least get to bang Gael García Bernal in the Big Easy, I am the ideal audience for this movie. Why, then, somewhere around the inevitable shopping spree montage, did I scrawl the words “WORSE THAN CANCER” in my notebook, and then underline them fiercely in the darkness?

Maybe it’s the way Bernal, as a doctor with seemingly zero ethical problem about sleeping with his terminally ill patient, says “schmuck” – because he’s supposed to be Jewish. Maybe it’s because Kathy Bates, as Marley’s mom, looks like she’s trying so hard with such unforgivable material. Maybe it’s because the biggest audience laugh of the whole movie came when Hudson said, with a straight face, “Come on, Doc. Level with me.” Maybe it’s because when Peter Dinklage, as a male escort, says the title of the movie, it turns out it’s his character’s nickname. Little Bit of Heaven. Oh, human suffering. Truly, this is what it looks like.

Mostly, brothers and sisters, I think we know why this movie causes a pain all the medical marijuana in the world can’t make a person forget. It’s Hudson. Hudson, whose character ostensibly goes through chemo, yet never loses a bouncy curl off her blond head. Who enters a trial but quits with a shrug about “quality of life.” Hudson, who, thanks in large part to director Nicole Kassell and first-time screenwriter Gren Wells, willingly put herself in a movie about cancer that seems to have been created by people who’ve only had cancer described to them. Hudson, who chose to place herself in the pantheon of life-affirming doomed sick girls like “Sweet November’s” Charlize Theron and “Autumn in New York’s” Winona Ryder and the mother of them all, “Love Story’s” Ali McGraw, and comes across as a shrill, affected parody of her hair-tossing Almay ad persona.

It’s an occupational hazard that any actress with marquee value will sometimes find herself in romantic schlock. Yet women like Renee Zellweger and Sandra Bullock have managed to balance their turkeys with riskier performances and a broader range of films. Hudson, in contrast, has remained frozen in time, forever doing variations on her young rebel with a heart of gold, Penny Lane. So let us remember Hudson today not as the husk of an actress she became, endlessly subjecting moviegoers to lazy dreck. Let us remember her as bright, fearless Penny. She’d want it that way. Let us move on, and spare ourselves the ordeal of further films in which a daffy blonde flashes a megawatt smile and recites terrible dialogue and dances adorably even though she’s, like, dying, you guys. For truly, life is much too short for such trials.

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Mary Elizabeth Williams

Mary Elizabeth Williams is a staff writer for Salon and the author of "Gimme Shelter: My Three Years Searching for the American Dream." Follow her on Twitter: @embeedub.

Lessons of a baby bucket list

Avery Lynn Canahuati accomplished a lot in her six months of life. Imagine what the rest of us can do in a lifetime

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Lessons of a baby bucket listAvery Lynn Canahuati (Credit: http://averycan.blogspot.com/)

What have you accomplished since November? What dreams have you fulfilled? In that time, Avery Lynn Canahuati threw out the first pitch at a baseball game, got a letter from the president and dressed up like a troll doll. She experienced deep love, and changed the lives of her family and friends. And that’s just what Canahuati got done in the first six months of her life. They were also the last.

Canahuati was born in Texas on Nov. 11. This past Good Friday, she was diagnosed with spinal muscular atrophy (SMA), a group of rare neuromuscular diseases that, in her case, were terminal. “We asked our doctors specifically if there is anything. Is there trial drugs, anything out of the country?” her mother, Linda, told CNN this week. So after “sitting around for two days crying and being devastated, since there is no cure and there is nothing we can do,” her father, Mike, decided to make the most of what was left of his daughter’s cruelly brief expected lifespan. Writing in Avery’s voice, he created a blog — and set a few goals.

“Imagine you’ve been diagnosed with an incurable genetic disease and you are told you will not only lose your ability to walk and move your arms, but you will die between now and the next 18 months. What would you do?” Avery’s blog reads. “This has become my reality. But before I die, there’s a few things I’d like to accomplish … this is my bucket list and my story.”

During an adventure riddled with so much good humor, so many images of smiling, laughing people that it’s damn near impossible to read about it without dissolving into a sobbing, balled-up wreck, Avery and her family went about achieving the feat of simply “celebrating life.” Avery’s objectives were as seemingly mundane as to “stay up past midnight” and “keep smiling even after surgery” — and as grand as raising a million dollars to fight SMA. Along with good-natured jokes about man-purses, hospital cribs that look like “Lockup: Texas Children’s” and insanely cute pictures of a smiling baby with a chick fuzz hairdo, are the harrowing realities of life with a fatal disease. There were tubes and operations and weight loss and reflux issues that affected her breathing and swallowing.

For all the items Avery got to cross off her list in just a few brief weeks — “eat ice cream,” “meet someone else with SMA” — there are many she didn’t. She didn’t, as she’d written she’d hoped to do, graduate college. Or get married. She didn’t play in a softball game or ride a Ferris wheel or attend a birthday party. She died suddenly on Monday afternoon, when, as her father wrote later, “one of her lungs collapsed and she went into cardiac arrest.” And one last time in Avery’s voice, he wrote that her final dream was “spreading awareness and helping to fund a cure for my friends.”

We live in a mortality-denying culture. Just this month, an Aflac WorkForces Report announced that “sixty-two percent of U.S. employees say it’s not likely they or a family member will be diagnosed with a serious illness.” Yet disease comes for many of us, and death comes for everybody. That’s not an abstract concept. It’s the truth. I didn’t always get it, either. But I certainly understand that much better now than I used to, after watching a few of my loved ones die over the past year while my best friend and I faced our own life-threatening cancers. And I’ve got to say, death really clarifies the hell out of one’s to-do list.

Avery’s goals were not her own, of course. They were the ones her parents set to maximize her remaining time. But it’s easy to see in her photos what a cheery, friendly baby she was, and the ways in which her sunny nature inspired others. It’s easy to see a mother and father who could have become embittered by a devastating twist of fate, who instead chose to fight fear with love, pain with compassion, who are trying to use their loss as a means of raising awareness and doing service for others. They did it in a matter of weeks. Think of what the rest of us could do with a few decades.

You shouldn’t have to wait for a diagnosis to consider the possibility that you are going to die. You are. Maybe even in the next six months. The question is: What will you do with the time you have left? Will you eat a cupcake, get a kiss? Avery did. Will you reach out and connect? Will you love and be loved? Will the ones you leave behind be able to call your life a “celebration” too? As Avery and her parents tell us, “You can live life dying or you can die living life.” Imagine you’re on the clock. Start acting like it. Go.

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Mary Elizabeth Williams

Mary Elizabeth Williams is a staff writer for Salon and the author of "Gimme Shelter: My Three Years Searching for the American Dream." Follow her on Twitter: @embeedub.

Words we had after he died

When we lost my husband to cancer, my family's world went upside down. We made sense of it the best we could

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Words we had after he died (Credit: Tinga via Shutterstock)

On the day my husband died, our daughter Allison started screaming my name from her bedroom, where she’d taken refuge. I burst open the door, imagining she had hurt herself, but she was just standing there in the center of the room. “Mom. Mom,” she said. “You are a widow now. A widow. I don’t want you to be a widow. You can’t be a widow.”  I had to agree: It just didn’t seem possible.

I tried to hold her, but she was hyperventilating a bit. “I’m ‘the girl whose dad died when she was 13′?” she choked out. “Oh my God. That’s who I am now.  When people ask me what my dad does, or how we get along, or anything, that’s how I will have to answer: ‘My dad died when I was 13.’”

Words. Labels for things, for people. We spend our whole lives making sense of them, I guess. Figuring out which one is the best, most accurate choice.

So many words become insider jargon in families: We are the only ones who know that “black toast intolerant” means “lactose intolerant”; that “minimisize it” means “minimize it,” which big pot is the “pasta pot.” These special languages that families create are another way they are individualized, that a family becomes a unique organism of its own.

Of course “widow” cannot apply to me. That word applies to little old ladies in fairy tales or someone who lives far, far down the street. My daughter cannot be identified forever by this one event.

But she is, and I am a widow, and in the months immediately afterward, we preferred life in the anonymity of Philadelphia over our small South Jersey town where even going to the convenience store means acquaintances’ pseudo-counseling, or others who steal quick looks at us, then look away, as if we are contagious.

We spent weekends in Philadelphia, and even though we live 15 minutes away, we slept on the floor of my brother’s one-bedroom, three-story walk-up, rather than in our own beds in our own four-bedroom, three-story home.

The kids learned that word, “walk-up,” and the phrase “wiz wit,” to get cheese sauce and onion on their cheesesteaks, and though they already knew what a contortionist is, and what break dancing is, and what a bong is, they get to see all of these things in Rittenhouse Square Park,  mere blocks from my brother’s place.

They learn these words because I could not sit my children down and say, here are words that changed your life: PICC line, ascites, carcinoid.

When Don was in and out of the hospital, and I learned more and more about his disease, its treatments, their side effects, I thought about language a lot, how I now knew all these words I had never even heard before. The gastroenterology team had to be updated about what the oncology team had said, and the interventional radiology people needed to know his newest albumen levels. There was a note in Don’s chart, “Ask the wife.”

“The wife”: my old label.

I would sit in the hospital and think about when we were first looking to buy a house, and how I was so proud when I could “speak real estate.” We would go out each evening with our real estate agent and look at six, seven houses a night.  I sat on the window seat of one home, nursed our baby Allison, and Don did a slow walk around the perimeter of the yard.  He came in and saw us there, and said, “Oh, so this is the one.”  And everything felt right and rich and I wanted to go to sleep right there, on the bare wood of the empty house that just that moment had become our home.

Once the house was ours I would wander around Home Depot and marvel at the language spoken there, how I felt like some mole who had just come up from underground to discover a whole other world going on above. The “wife” label, the “mother label,” the “homeowner label” all new; none felt generic, at least to me, they were points of pride and exactly where I wanted to be.

About two months after Don died, the kids and I were at a friend’s beach house and we watched the new version of “Freaky Friday.”  In it, a widow remarries, much to the teen daughter’s (initial) dismay.  When the movie was over, Hayley, 11 years old at the time, said, “Mom. You can get married again. In three years. Don’t get married again for three years.”

Allison stood up and just started yelling at Hayley. “She can’t get married again in three years. She can’t get married again ever. I’m not going to have a stepdad.”  Christopher, only 5 years old, said, “I would like a dad, Allison.”  Allison yelled at him, too, and soon I was saying, over and over, “We don’t have to talk about this right now.”  And none of us could understand what the other was saying.

When Allison was 5 or 6, the boy from across the street, a year older and therefore much wiser, took it upon himself to teach her how to properly pronounce “yellow.” She said “lell-o” and I hadn’t had the heart to correct her. The charm of her mispronunciation mattered more to me. I listened from the kitchen as he broke it into two syllables and made her repeat, again and again, “Yell-oh, yell-oh.” I wanted to rush in and stop him but knew that I couldn’t, that it was time, that it was natural and organic and even lovely that another child would teach her.

In other words, I couldn’t stop her learning, like I can’t stop this, can’t take away this label, this horrifying application of the word “widow,” of the phrase “my dad died when I was 13.”

Life went on and when I’d be out with the kids one or the other would say, when it seemed like all the other families had a mom and dad, “I hope people don’t think we’re divorced.”  Divorce implies decisions, and no choice had been made in the shape of our family.  The use of “we” was endearing to me, and only made my heart break more.  We would go places with my brother Steven and waitresses or ride attendants or whomever would assume that Steven was my husband/their father, make some kind of reference like, “You’ll have to ask your father” when a child asked for more Coke; none of us corrected these ignorant strangers.  The kids were simply more comfortable when we had that male figure with us, when we looked “normal” to the outside world.  They needed my brother as a placeholder for what was missing.

I have my label and the kids have their phrase, “my dad died when I was 13,” or 11, or 5. I fill out forms and I get irritated when the choices are “married” “single” or “divorced.”  But when “widow” is an option — even now, seven years later — I think of that first day and Allison’s horror at the term. The kids are now old enough that they have to sometimes fill out their own forms.  They tell me they sometimes write “deceased” and sometimes just cross the father’s info section out. I didn’t know when to take off the wedding ring or what to do with it when I did.  I don’t know when the transition happens between being a widow and being widow-ed.  The label is the label no matter the verb tense.

I have been dating someone for five years and I still choke on the word “boyfriend.” I could not even bring my tongue to the roof of my mouth for the word “love.” I asked my therapist why, when friends all around me profess love within the first two weeks of a new relationship. “What is wrong with me; why can’t I say it?” And she said, “Because you know what it means.”

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Kathleen Volk Miller is co-editor of Painted Bride Quarterly, co-director of the Drexel Publishing Group and an Associate Teaching Professor at Drexel University. She is a weekly blogger (Thursdays) for Philadelphia Magazine's Philly Post and is currently working on a collection of essays. Follow her @kvm1303.

Look at my scars

The remnants of my own illness have taught me that when it comes to difference, don't stare -- but don't turn away

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Look at my scars (Credit: Natalia Klenova via Shutterstock)

“Do I freak you out?” she had asked.

It was the kind of question adults rarely pose. But Abigail (a pseudonym, like some other names in this piece) is 8, and she doesn’t have any qualms about being direct. The person she was asking, my daughter Beatrice, likewise didn’t hesitate in her reply.

Abigail is new to our school this year. She is in every way a typical second-grader, except that she was born without a left hand. It’s a trait that makes her undeniably noticeable, and so, sometimes, people ask questions. Sometimes Abigail has questions of her own. Sometimes, when you’re different, you want to know.

When Bea told me what Abigail had inquired about a few weeks ago, I’d winced a little, wondering how my child had answered. Had she passed whatever test Abigail was giving? I know how frank Bea can be, how she walks behind me when we’re out in public, checking whether the shiny, taut expanse of bare skin on my scalp is visible. “Mom, your bald spot,” she’ll say when we’re in a restaurant, fussing with locks to try to hide the five-centimeter circle where, a year and a half ago, I had surgery to remove cancer.

I know that Abigail’s question haunts many of us who are physically different, in ways both small and large, either by birth or circumstance. It plagues my friend with accident scars on his legs, who’s already nervous about summertime and exposing his flesh at the beach this year. Maybe it’s a small yet indelible birthmark on the chin. Or it’s a big burn. Or a missing limb. Does this make you want to look, or want to look away? Do we make you uncomfortable? Do we freak you out?

“It’s a thing that has to get explained,” says Natalie, a New York executive who’s had three serious melanoma surgeries and lives with ongoing psoriasis lesions. “For me, the anticipation of that is hard. I think people want to distance themselves from someone who’s had a traumatic event. Somehow you wind up having to reassure them that you’re not contagious, that they’ll be OK.”

Though she tries to be “very open about my illness, because I want people to get it,” Natalie admits she has nevertheless “some really upset moments” of unasked for attention. “I once had someone literally cross the road to ask what was wrong with my legs,” she says. “I was feeling really proud of myself for being brave enough to wear the skirt. And this woman came along and destroyed it.” She adds, however, “I don’t feel sorry for myself, and I don’t wear this as a badge. I just want to be looked at as the successful, independent woman I am — but I understand that some people can’t do it.”

It’s true that some people can’t, and there’s loss in there. I used to have a friend who liked taking pictures of his buddies, including me – right up until my diagnosis and my relatively minor disfigurement. Then he never took another photograph of me again. I wonder if I freaked him out.

My friend Frank, a West Coast entrepreneur, understands. A few years ago, Frank had radical surgery for bladder cancer that left him with what he calls a “Guinness Book of World Records scar” that starts at his sternum, loops around, and ends at his pubic bone. He also has a partial hernia that leaves him, in his word, “lumpy” under a shirt.

“I get a lot of people staring. I’m used to it,” he says. “It usually doesn’t bother me. I’m just a little self-conscious when people are peeking out the corner of their eyes in the locker room.” And, he recalls, “one time my wife and I were at Caesar’s Palace lying out in the super-bright, crystal-clear Vegas sun, and this woman next to us asked, ‘What happened to your stomach?’ She was pretty horrified when I told her.”

He’s still sometimes horrified himself. “I look at myself every morning, and I think of all the horrible shit that I’ve been through because of this disease,” he tells me. But when he looks in the mirror, he also sees a mark of survival. “I’m working out and riding my bike to train, and if that doesn’t tell you how I’m doing, go ahead and ask me. I don’t think I look that bizarre. I think I look like a guy who’s had major abdominal surgery.”

As Frank knows, when you’ve been through something life-altering, the first person you have to get to accept your look is yourself. “The first time I saw myself afterward, I thought, That looks very interesting,” says Johan Otter. Johan is a master of understatement. Seven years ago, Johan was hiking with his daughter in Glacier National Park when he was mauled by a grizzly bear. His scalp was torn off; his eye was clawed. He had to wear a halo brace for 12 weeks and go through multiple grafts and surgeries to recover. And then, he says, he had to learn to “push through” his first time out in public again.

“You get used to it,” he says. Besides, he jokes, “I never have a bad hair day.” Otter admits he can still be somewhat surprising to strangers. “Once at Costco this woman said, ‘Oh my God, what happened to your head?’” he recalls. But though he admits, “I’m a vain person just like anybody else,” Otter says that “I’m always extremely proud of my scars. When you go through something like this, people see you with your true self. You learn that what matters is what’s inside.”

It’s not always easy in our perfection-driven culture — where a weight gain of five pounds can be treated as a life crisis and toothpaste brands wage war on dingy teeth and a “puffy face” means you’re no longer considered “pretty” – to believe that within battle scars and what others would call abnormalities, there is a raging, painful exquisiteness. It’s often hard to feel the sideways glances and puzzled stares. But it’s harder still to be overlooked entirely, to feel like the remnants of the trials we’ve endured are the things that make others unable to look at us. We want to be looked at not with pity, not with fear, not with morbid curiosity. Simply with clear and open eyes.

So when Bea told me her friend Abigail wanted to know if she was freaking her out, I hoped Bea had answered honestly. More than that, I hoped she answered kindly. I hoped she didn’t pretend she’d never noticed Abigail’s missing hand, or changed the subject altogether. “What did you say?” I asked her nervously. “I told her no,” she shrugged. “I said, ‘Why would I be freaked? I love you.’” And then I exhaled.

I know life for Abigail – and Natalie and Johan and Frank and everybody else wounded or scarred or born different — is more complicated than that. The things that make us stand out in the crowd define us in a million little ways. They can remind us of the most dramatic, heroic moments of our lives, and of every small indignity and cruelty that has happened since. But what Bea and Abigail got to in the span of one recess period was that life isn’t about seeing past each other’s imperfections. It’s about being unafraid to look at them directly. Because that’s where the love is — in the cracks and the sufferings and the challenges. Life isn’t flawless. But it can be very, very beautiful. That day at recess, Bea told me, she had kissed Abigail, right on the place where her arm stops at the wrist. And they played together until the bell rang, and it was time to go back to class.

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Mary Elizabeth Williams

Mary Elizabeth Williams is a staff writer for Salon and the author of "Gimme Shelter: My Three Years Searching for the American Dream." Follow her on Twitter: @embeedub.

Confronting cancer webcast

Full videos posted for Salon Core conversation on "coming out of the sickness closet" VIDEO

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Confronting cancer webcast

My oncologist says that whoever came up with the phrase “the gift of cancer” has the worst taste in gifts she’s ever heard of. But though it’s not exactly a set of car keys under the seat, cancer has, for the past year and a half, been the gift I’ve been given. And from an initial malignant diagnosis of melanoma through surgery through a Stage 4 rediagnosis through a last-ditch, Phase 1 clinical trial to a recovery that has stunned the research community, I’ve shared this adventure with the readers of Salon. And along the way, you’ve given so much in return. You’ve told me your own experiences with illness, with the healthcare system, with grief and frustration, and with the ways a shattering experience — either your own or that of someone you love — can turn life around. Sometimes even for the better. So it was a unique privilege to get to talk to a few of you recently for a Salon webcast, and answer your questions on life here in Cancer Town. For those of you who couldn’t make it live, videos of the full webcast are posted below.

The connections we find in unlikely circumstances are what get us through them. They’re a gift. Thank you for it.


Mary Elizabeth Williams

Mary Elizabeth Williams is a staff writer for Salon and the author of "Gimme Shelter: My Three Years Searching for the American Dream." Follow her on Twitter: @embeedub.

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