Cancer

Nanomedicine’s brave new world

In just a few years, doctors will know everyone's genetic identity. This knowledge will be a blessing -- and a curse.

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Nanomedicine's brave new world

It’s the not-too-distant future, say 2016. You have been diagnosed with Stage III melanoma. Cancer has metastasized throughout your body. Just 10 years ago, in 2006, the choice of treatment would have been based on the type of primary cancer, the size and location of the metastasis, your age, your general health and your treatment history. Your prognosis would have been gloomy. But that was back in 2006, before we entered the era of nanomedicine.

In 2016, your doctor will be capable of scanning your entire genome in a few minutes. She will do this because every cell has a different gene expression pattern or profile. When a cell becomes cancerous, this profile changes. Your Stage III melanoma has a unique, schizoid genetic signature reflecting both a skin cell heritage and a newly acquired outlaw metabolism. Your doctor will explain that while your cancer has a great deal in common with other Stage III melanomas, it is not exactly like any other. Your doctor knows this because for the past few years DNA from virtually every melanoma patient in the U.S. healthcare system has been routinely extracted, scanned and deposited in a national database. This population of sequences, fully analyzed and with a user-friendly graphic interface, is available in real time. Searching this database for any specific cancer sequence will be about as difficult in 2016 as finding Madonna’s birthday on Google is today.

The exam room of 2016 reflects a rainbow of nanomedicine paraphernalia. Diaphanous pink microtubes sit in bubble packs like sets of false nails. Red motorized pipettes hang in translucent blue plastic racks like designer tool kits from the Starship Enterprise. Shelves are filled with what appear to be airline-size single-serving cereal boxes with very slick, stunningly bright labeling. These boxes contain individually packaged, ready-to-use diagnostic kits with exciting brand names — DNA Warrior, Mighty Clone or Gene Catcher. An invisibly small drop of your body’s fluid is injected into the DNA Warrior, which is a cylindrical cassette the size of a pinhead. This cassette is slotted into the Sherlock Genomes molecular diagnostics system.

From the outside, this “system” appears considerably less complex than your current cellular telephone. Inside, a single melanoma cell is purified from your blood via solid-phase fluorescent immunoaffinity chromatography, a technique in which a single cancer cell is “hooked” from amid millions of its healthy companions using a synthetic antibody molecule and “reeled in” on the beam of light produced when the two unite. Twenty years ago this technique required a million-dollar instrument the size of a 767 cockpit and a dedicated operator. Now it is little more than routine blood work.

Once purified, the renegade cell is moved via electroosmotic microfluidic channels to a lab chip that, in another venue, could pass for a credit card. Electroosmosis uses the charged molecules on the surface of the channel itself to cause a solution to flow in a specific direction. This will only work when a tube or channel is extremely small. Microfluidics use pipes the size of a human hair to create plumbing systems that empty into reaction chambers much smaller than the head of a pin. This enormous volume is dictated by the dimensions of your humanity — any smaller and a living cell wouldn’t fit inside. On the lab chip, a purified cancer cell relinquishes its cache of chromosomes and within seconds your entire genome has been sequenced. That bears repeating. In a few years single-molecule DNA sequencing will be a reality. The 2.91 billion bits of biological data that bestow your unique genetic identity will be available virtually anytime for the cost of a routine blood test. Sound far-fetched? Two weeks ago J. Craig Venter, the genomics entrepreneur who paced the U.S. government to the completion of the Human Genome Project, announced that he hopes to offer $10 million as a prize (he originally pledged $500,000) for automated DNA sequencing technology that can decode a human genome for $1,000. At that same conference, a commercial instrument capable of sequencing 1 billion bases, or chemical groups, of DNA per day was unveiled.

A machine that “shreds” a billion bases of DNA a day could burn through the human genome in 72 hours. Yet we fully expect that this phenomenal accomplishment will be eclipsed within a few years by nanoengineering. Around the world, research teams are closing in on single-molecule DNA sequencing technology. One group has published a design for an instrument that could place a million single-molecule sequencers on a device the size of a postage stamp. To accomplish this, each sequencer will have an operating volume of one zeptoliter — much less than one billionth of one billionth of a liter! There can be no doubt that within a few years, most individuals will have their genome sequenced and encoded as part of their medical record. And this is just the beginning.

No equation can represent the astonishing technological trajectory we are on. The trek from Olduvai Gorge to Mesopotamia — from Homo habilis to the wheel — took 1.5 million years. A mere 5,500 years took us from the wheel to the double helix. Then 50 years to the human genome. Nanotechnology, our ability to build molecular devices with atomic precision, is the transcendent culmination of our co-evolution with tools. With the advent of nanomedicine, we will turn these tools inward.

The National Cancer Institute’s fact sheet on nanotechnology and cancer says, “Most animal cells are 10,000 to 20,000 nanometers in diameter. This means that nanoscale devices (having at least one dimension less than 100 nanometers) can enter cells  to interact with DNA and proteins. Tools developed through nanotechnology may be able to detect disease in a very small amount of cells or tissue. They may also be able to enter and monitor cells within a living body.”

According to the National Institutes of Health, nanotechnology could create devices capable of reporting the onset of cancer at the exact moment of molecular metamorphosis, long before today’s tests are effective. The key, as with DNA sequencing, is single-molecule sensitivity. One approach will use individual carbon nanotubes (molecular rods about half the diameter of the DNA molecule itself) to literally trace the physical shape of a single DNA molecule the way a phonograph needle traces a vinyl record. Another early-detection strategy will use the quantum dots (Q-dots) described in a previous article. Latex beads filled with these crystals will be designed to bind to specific DNA sequences. When the crystals are stimulated by a flash of light, they emit colors that light up the sequences of interest. By combining different-sized quantum dots in a single bead, scientists will create probes that release a spectral bar code specific for each type of cancer mutation.

Nanotechnology will also create tools to eradicate cancer cells without harming healthy cells. In therapy applications, as in detection, single-molecule recognition is the key. Each magic nanobullet will home in on a specific, targeted molecular structure. In fact, the goal is to treat cancer like an infectious disease. We will be vaccinated with nanoparticles that continuously circulate through the body. This cancer vaccine — really a primitive cancer-killing nanobot — will detect molecular changes, assist with imaging, release a therapeutic agent and then monitor the effectiveness of the intervention.

How close are we to cancer-killing nanobots? The NIH Web site talks about nanoshells — minuscule beads coated with gold. By manipulating the thickness of the layers constituting the nanoshells, scientists will design them to absorb specific wavelengths of light. The most useful nanoshells are those that absorb near-infrared light, which can easily penetrate into the body. Absorption of light by the nanoshells generates a lethal dose of heat. Researchers can already link nanoshells to antibodies that recognize cancer cells. In a “magic bullet” scenario, nanoshells will seek out their cancerous targets. Once they have docked, they will be zapped with near-infrared light. In laboratory cultures, the heat produced by light-absorbing nanoshells killed tumor cells while leaving neighboring cells intact. Experts believe quantum dots, nanopores and other devices may be available for clinical use in five to 15 years. Therapeutic agents are expected to be available within a similar time frame. Devices that integrate detection and therapy could arrive in the clinic in about 15 to 20 years, which means a cure for your Stage III melanoma and other forms of cancer could arrive within your lifetime.

Things like quantum-dot bar codes and magic bullets made of gold nanoshells are in the lab right now. But these therapies are not pure nanotechnology. Rather, they are a hybrid of nanotech, biotech and conventional chemotherapy. For true believers, the real revolution will come when scientists start building molecular devices from their component atoms. The wildest dreams of nanomedicine are displayed in the Nanomedicine Art Gallery, where you can view illustrations and animations of futuristic phenomena including bronchial airbots, bacterium zappers, blood probes and microbivores. According to the artist, the microbivore is “a theoretical nanorobot” that will cruise our bodies in the relentless pursuit of bad actors. If we can program these bots to eat bacteria, we can program them to eat cancer cells: So microbivores will quickly morph into the sheriffs of the nano-West, clearing out evildoers and varmints of all stripes.

Not everyone believes that molecular assemblers will be viable. But with or without them, it’s undeniable that revolutionary nanomedicine-based tools are on the way. And when they arrive, they’ll turn our world upside down — and not always in a good way.

Nanomedicine will be one of the greatest boons in human history. It could eventually allow doctors to save millions of lives and prevent entire populations from contracting various diseases. But it could also push the cruel divide in medical access that already exists to the absolute limit. Those with access to nanomedicine will face a different cruel divide, created by the inevitable time lag between the availability of diagnostic tools and efficacious cures. This gap, perhaps a decade or more, will raise its own set of unprecedented ethical questions — ones that will get even thornier once those cures are available. In the near future this tsunami of nanomedical choices could literally drown our healthcare and insurance systems.

Some of these choices involve elective genetic selection. If we can find and reprogram cancer or diabetes genes, we can certainly find and reprogram genes for simple physical traits like height or eye color. Genetic engineering raised these questions, but nanomedicine ensures they are here to stay. The physiological genetics of more complex traits like personality, sexual orientation and antisocial behavior will not be far behind. Likewise, nanobots that circulate and release chemicals on cue need not be limited to medicinal applications. (Think of the fate of the liquor industry when ethanol-releasing bots are online.) The ethical and financial implications of these developments are obvious.

But long before we have cures, nanomedicine-based diagnostics will create its own vortex of urgent healthcare issues. In the less distant future, say 2012, single-molecule DNA sequencing will mean that your genome will become an integral part of your medical record along with all sorts of other biomolecular identifiers. Beyond DNA sequencing, the tools of nanobiotechnology will allow us to predict both the metabolic state and the ultimate fate of cells and tissues with increasing precision. As a result, medicine will enter a phase we might call “Cassandra and the bell curve” — an uneasy situation in which we can predict the future, but only partially, with the result that we never get a truly specific prophesy to believe in.

On a long enough timeline, this means a new arsenal of weapons for, among other things, the war on cancer. It will be the promised golden age of biopharmaceuticals. But meanwhile the smart money is in diagnostics.

Lots of companies are eager to get in on the ground floor. In 2000 Celera Genomics made history as the private company that forced an international consortium of developed nations to share the glory of sequencing the human genome. Celera still markets the intellectual property created by this accomplishment, but the heavyweight champion of DNA sequencing is now vigorously pursuing a career in the ring of molecular diagnostics. Celera Diagnostics is focusing its discovery efforts on “identifying genetic variations associated with common, complex diseases.” And it is “working to develop new diagnostic products and to improve human health through an approach we call Targeted Medicine.”

In theory, targeted medicine (aka personalized medicine) sounds awesome, and whenever it’s viable most of us will want it. But before it is perfected, it will leave all of us — patients, doctors, governments, healthcare providers and insurance companies — in a frustrating, confusing and sometimes tragic limbo. And even after it is viable, it will raise huge questions, ones for which there are no easy answers.

Consider recent progress in the molecular diagnostics of breast cancer. Breast cancer patients with the same stage of disease can have markedly different treatment responses. In practical terms this means that no woman with breast cancer, even from the same demographic, has exactly the same illness as any other. Each woman’s cancer has its own unique genotype. Currently, conventional medical treatment with chemotherapy can reduce the risk of metastases by approximately one-third. However, clinical data also show that 70-80 percent of patients receiving chemotherapy do not, in fact, benefit from it. Put simply, at least seven out of every 10 women patients endure chemotherapy for nothing. The agonizing current dilemma for doctors and patients is that chemotherapy will prolong life for three of the 10 women, but we can’t determine which three.

The plan is to use gene-scan data to predict which patients will benefit from chemo. In 2002, workers in the Netherlands used a DNA microarray to develop a gene expression profile that outperformed all currently used clinical parameters in predicting disease outcome. They suggested that their findings provided a strategy to select patients who would benefit from adjuvant therapy (i.e. chemotherapy and/or radiation). This information, originally published as basic research, reached the public in articles with encouraging titles like “New Study Could Cut Breast Cancer Overtreatment.” In this article, a member of the research team was quoted as saying, “We have confirmed that we can predict with 90 percent certainty that a patient will remain free of breast cancer for at least five years.” Since then things have improved, but only incrementally.

The key concept here is “a patient” — i.e. you or you but not her. This is the world of personalized medicine, made possible by gene-scan-powered molecular diagnostics. In a perfect future, these gene scans will tell us which seven women can decline chemotherapy. But in the immediate future, these scans will only tell us the probability that a woman can safely decline treatment. This probability will get better every year, but when will molecular diagnostics be reliable enough to base life-and-death decisions on?

This work on breast cancer is, literally, just the tip of the iceberg. Long before single-molecule DNA sequencing (or $1,000 genomes) hits the marketplace, thousands of labs around the world will be using standard biotechnology instrumentation such as DNA microarrays to create molecular profiles of people and populations. These profiles will be used to develop diagnostics for every major disease and disorder. Like reproductive cloning, this technology takes us to the very essence of what it means to be an individual. Unlike cloning, the field of molecular diagnostics is receiving almost universal acclaim as a worthy goal for the future of medicine.

“A little knowledge is a dangerous thing. So is a lot.” Once again, Einstein provides the appropriate homily. Like the manifestation of Moore’s law in computing, improvements in molecular diagnostics and nanomedicine are astonishing but still leave us far short of where we need to be. Unlike for the next generation of semiconductor chips, the time to market for each new product in targeted medicine will be measured in human lives. Before we have the set of genetic profiles or the tools to treat all breast cancers, we will know enough to modify the treatment regimes of a few breast cancers, then enough to help some breast cancers, then enough to help many. At what point will this knowledge be allowed to enter the healthcare system? Will everyone have access to it? Who will pay for it? And who will make all these decisions?

Theoretical microbivores notwithstanding, no one seriously questions the transformative power of nanotechnology for human health. But it is equally true that no one understands how this revolution in personal medicine will impact a healthcare delivery system that, for many, is already hopelessly complex and frustrating.

New pharmaceuticals now reach the marketplace by showing efficacy in clinical trials based on the average response of a patient population. But nanotech-based diagnostics will open the option of personalized medicine, which, by definition, means that there is no longer an “average” response to therapy. Each patient’s treatment regime should be unique. But there’s no way we can do that with our existing healthcare system.

The reality is that we will have a world of molecular diagnostics long before we have a world of molecular cures. In the immediate future, gene scans will guide the use of conventional or biopharmaceutical therapies. In this world, women diagnosed with breast cancer will be advised that postoperative chemotherapy will not extend their survival. But this advice will come with a statistical caveat. More correctly, each patient will get her own prognosis with her own statistical caveat. The woman, her doctor, her insurance company and the government will all receive a statistically weighted prediction about her future. How are society, the government, private industry and the individual going to deal with this situation? The first act of the drama called personalized medicine will still be written by nature, the second by biotechnology, the third by nanotechnology. But who or what will be the author of the finale?

Within a generation, nanotechnology will completely invert our concept of medication. Today vaccines come with literature warning of a low probability that “some people” are subject to side effects or complications. In the age of nanotechnology-driven personalized medicine there will be no such thing as “some people.” Theoretically, you should be able to know if you are that one in 10,000. But will you want to know? Will you be allowed to know? What will it cost to know, and who will pay? What if you could have known but didn’t ask … or weren’t told? And perhaps most disturbing of all: What if it turns out to be too expensive for society to pay for universal diagnosis, let alone treatment? Could we enter a world in which the rich live on and on, while the poor are denied even the knowledge of the disease that is inexorably killing them and whose prevention is at hand?

Our already faltering system was never designed for, nor can it handle, the flood of molecular diagnostic data that will reach biblical proportions within a decade. Just when we thought the web of healthcare delivery couldn’t get any more tangled, patients, doctors and HMOs are about to meet the world of personal genome sequencing. Then will come gold nanoshells and, perhaps a bit later, microbivores.

And by the way, the proliferation of unique molecular identifiers will make medical privacy an impossibility because, ultimately, these types of data cannot be encrypted. The medium is the message. Millions of people have your fasting-blood-sugar value, but no one else on earth has your gene sequence. Get the idea? Any single-molecule-based nanomedical procedure could identify you beyond a shadow of a doubt. Yet a fundamental principle of nanomedicine is that billions of single-molecule fingerprints from DNA, RNA and proteins will be routinely available for diagnostic and therapeutic strategies. Which is the same as saying farewell forever to anonymity for your health records.

O brave new world, that has such genes in it!

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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