TIME Family

What It’s Really Like to Care for a Dying Parent

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Despite everyone's best efforts, my mom is clearly, obviously dying

xojane

There are two things that movies consistently get wrong: sex and death.

Just like no real-life sex scene has ever involved seamless, body-fluid-free sex (I, for one, seem to consistently get stuck in my skinny jeans while covertly trying to take them off), very few deaths are the simple, dignified situations we see portrayed on screen. Death, real death, is a messy, confusing process for everyone involved.

A few months ago I wrote an article for xoJane about my mother, who was diagnosed with terminal brain cancer. At the time she had plateaued. Roughly three weeks ago, however, that changed.

Determined to walk, she hauled herself out of bed — and promptly fractured her pelvis. At the time, she was still receiving treatment — now she’s in hospice. As terrible as it was before, this is worse. She is completely bedridden and has a catheter. Despite everyone’s best efforts, she immediately got a UTI and yeast infection upon arriving home. She’s restless — she’s scared. What little she says rarely makes sense. She is clearly, obviously dying.

How do you care for someone who is dying? We all have a pretty good idea of what it means to nurse someone back to health, but how do you compassionately nurse them into death?

Even typing that raises my hackles a little. We live in a society that prizes life — by any means, in any shape — above all else, so reconciling that programming with what is clearly worse than death is difficult, to say the least. I am completely pro-choice and very much believe assisted suicide should be legal. But nevertheless, the ethical dance I’m doing now feels fraught with peril. I usually lay my mom’s pills out with her breakfast. She doesn’t ask for food or water, but I still bring them.When she does eat, she doesn’t eat much — a bite here and there.

And don’t even get me started on the morphine. She’s agitated a lot of the time — to the point of attempting to to get out of bed — and morphine helps calm her. But is it wrong to administer it in order to relieve psychic, not physical, pain? While the fracture is painful, the truth is I dose her more for the agitation than for the pain. Is that merciful, or profoundly messed up?

These are the questions I wrestle with daily. I know my mom — she would have never wanted to live like this. One of the last clear things she said to me when she was diagnosed was that she didn’t want to dwindle.

I can see the pain and frustration on her face when I tell her she can’t walk, or when I have to clean her after a bowel movement. But at the same time, I’m not sure where my place is in this process. She is mostly non-communicative, so I can only guess at what she wants. I have asked her if she’s tired, if she’s ready to let go — her only response is a blank stare.

Recently, I met with a social worker to discuss mortuaries, and on the back page of the packet she gave me there was a section regarding donating the body for scientific purposes, specifically the eyes. I felt like I’d been sucker punched. I believe in donating one’s organs for the greater good, but how do you make that decision for someone else? I know my mom is an organ donor, but…which organs? How many organs? Is there really a moral difference between donating someone’s eyes and donating someone’s kidneys, or am I just being squeamish?

The only organ donors you see on “Grey’s Anatomy” are car accident fatalities. No one ever talks about mulling over whether or not to give someone’s organs away while they’re still conscious in another room.

Tomorrow will be the one-year anniversary of my mom’s diagnosis. She’s made it much farther than anyone ever predicted, but I can’t pretend that I believe that’s a good thing. A family friend told me that I’d look back and treasure this extra time I was able to spend with my mom — I wish that were true, but it isn’t. I’ve watched her do exactly what she stated she didn’t want to do — dwindle. It’s horrific, and I know neither she nor I expected it to be like this.

Which is why I’m writing this article — I think it’s important to open a frank dialogue about what it means to die. How do we help our loved ones die? What, exactly, do heroic measures mean to different individuals? For one person it might be CPR, but for another, it might be administering any medication at all, down to steroids or anticonvulsants. What are tolerable living circumstances — i.e., what happens if you become bed bound? Incontinent??

These are tough questions, and they’re usually brought up too late, whispered shamefully in the corridor of a hospital. But my hope is that, just like we’ve learned to discuss with our children what they should actually expect from sex, we’ll someday be able to talk openly to one another about what we can really expect from death.

Gracie F. is a writer and contributor to xoJane. This story originally appeared on xoJane.com.

TIME Ideas hosts the world's leading voices, providing commentary and expertise on the most compelling events in news, society, and culture. We welcome outside contributions. To submit a piece, email ideas@time.com.

TIME health

Revlon Removes Some Dangerous Chemicals From Its Products

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A petition signed by over 100,000 consumers brings about the change

Cosmetics giant Revlon announced Thursday that two long-chain parabens and a formaldehyde-releasing chemical would no longer be used as ingredients in its products, in a move that was applauded by environmental and health advocates.

Long-chain parabens have been linked to endocrine disruption, while formaldehyde may cause cancer.

Revlon was responding to a petition demanding the change signed by more than 100,000 people. The petition was organized by the non-partisan nonprofit Environmental Working Group.

Two long-chain parabens (isobutylparaben and isopropylparaben) have now been removed from Revlon cosmetics, as has DMDM hydantoin, which releases formaldehyde. Revlon is also reformatting a product that contained butylparaben.

“We are pleased that Revlon has acted to remove these toxic ingredients,” Environmental Working Group Executive Director Heather White said in a statement. “We urge all companies to do the same.”

TIME Cancer

How Calling Cancer a ‘Fight’ or ‘Battle’ Can Harm Patients

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War metaphors can lead to feelings of guilt and failure

Using hostile, warlike metaphors to describe cancer may make patients less likely to take steps toward certain treatments, new research suggests.

The study, which will be published in the January issue of the Personality and Social Psychology Bulletin, found that patients are less likely to engage in important limiting behaviors, like reducing smoking and cutting back on red meat, when researchers associated cancer with words like “hostile” and “fight.” In fact, the study shows that war metaphors do not make patients any more likely to seek more aggressive treatment.

“When you frame cancer as an enemy, that forces people to think about active engagement and attack behaviors as a way to effectively deal with cancer,” says David Hauser, who led the study. “That dampens how much people think about much they should limit and restrain themselves.”

In earlier research, investigators found that war metaphors can lead to feelings of guilt and failure in patients who die of cancer, even though they have little control managing it.

“Blame is being put on the patient, and there’s almost a sense that, if you are dying, you must have given up and not have fought hard enough,” said the study’s author, Lancaster University professor Elena Semino, in a statement.

Semino based her finding on an analysis of 1.5 million words from interviews and online cancer discussions that she conducted with colleagues. She is now working on a manual of cancer metaphors for health care providers.

Still, it may be difficult to change such a deeply-rooted element of our lexicon. Words like “fight” and “battle” make the top-ten list of words commonly associated with cancer, according to Hauser. Straightforward words like “die” and “suffer” comprise the remainder of the list. According to Semino’s study, words like “journey” might be a better replacement for “battle.”

Hauser says that medical professionals and media outlets should try to help expand the way that people think about the disease. He cites the “watchful waiting,” a passive method of treating prostate cancer, as one such example.

“What would be more beneficial would be changing the sorts of stories about cancer out there to expose aspects of the disease that don’t fit with this enemy conceptualization,” he says.

TIME Cancer

Indoor Tanning Can Burn Your Eyeballs, Study Says

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Indoor baking burns your body in some surprising places

If you’re prone to sporting a suspiciously unseasonal glow, there’s new data to make you reconsider your next indoor tan.

According to a new research letter published in JAMA Internal Medicine, thousands of people each year go to emergency rooms for tanning salon-related injuries. The researchers found that about 3,200 such injuries were treated each year in U.S. emergency departments from 2003-2012—mostly for white women between ages 18-24.

The most common types of injuries were skin burns, eye injuries, muscle and bone injuries and passing out. Skin burns, which accounted for 80% of injuries, were predictably the most common. Almost 10% of injuries were due to fainting; several people described falling asleep while tanning. And about 6% of the injuries were on the eyes—mostly eye burns from excessive UV exposure.

“We saw plenty of eye injuries,” says Gery Guy, Jr., PhD, of the U.S. Centers for Disease Control and Prevention. “This is concerning because it’s not only an acute injury…but it also puts you at risk for certain conditions down the road, like cataracts or eye melanoma.” The team also noted other sources for eye injuries, like when tanning bulbs broke and shattered into people’s eyes, Guy adds.

Indoor tanning has dropped in popularity since 2003, when injuries numbered in the 6,000s. Many studies have emerged since then that show a link between tanning devices and skin cancer, and 11 states now restrict tanning among minors under age 18, Guy says. In 2014, the Food and Drug Administration reclassified indoor tanning devices from a Class I device, which poses minimal risk, to a riskier Class II device.

“It’s important to point out that 3,000 injuries reporting to an emergency room may not be a huge number, considering the millions of people who continue to indoor tan,” Guy says. “But it’s important to realize that one visit to an emergency room from indoor tanning is too many, given that indoor tanning devices should be avoided.” So much for a healthy glow.

TIME Cancer

Many Breast Cancer Patients Get Unnecessary Radiation

About two thirds of breast cancer patients may be getting more radiation treatment than they really need according to the latest study

When it comes to treating cancer, the common approach is often “more is better.” Throwing everything medically possible at growing tumors can keep them from spreading and, most important, help patients survive their disease.

But in a paper appearing in JAMA on Dec. 10, researchers say it’s time to rethink that strategy. They found that women with early stage breast cancers may not need the usual seven weeks of radiation therapy after surgery to remove their tumors. Instead, a three-week course with higher intensity radiation can be just as effective.

“The fact is, more is not always better in cancer care,” says the study’s lead author Dr. Justin Bekelman, assistant professor of radiation oncology, medical ethics and health policy at Penn Medicine’s Abramson Cancer Center. “Often less is just right. But the challenge in cancer care is that way of thinking is not where we are today.”

MORE: No More Chemo: Doctors Say It’s Not So Far-Fetched

It’s a challenge, he says, because it goes against the intuitive idea that hitting tumors with more radiation or chemo is going to have a better chance of killing them and preventing them from spreading. But in recent years, data is showing that in some cases, there are alternatives that could be just as effective but easier on patients and even less expensive. As four trials have demonstrated, shorter regimens can result in similar survival as the longer course of radiation. Bekelman and his colleagues wanted to know how many women were picking up the shorter regimen.

The researchers analyzed records from 9 million women provided by Anthem, Inc. Among them, more than 15,000 were diagnosed with early stage breast cancer and had surgery to remove their tumors followed by radiation. While rates of shorter course radiation did increase from 11% in 2008 to 34.5% in 2013, that percentage still represented only a third of the women who could have taken advantage of the shorter radiation treatment.

MORE: Removing Both Breasts May Not Improve Survival From Breast Cancer

Why the reluctance to adopt the therapy that takes less time and allows women to return to their normal lives sooner? “I think physicians are much more comfortable with the longer treatment,” says Bekelman, “I wonder to what extent physicians are engaging with their patients to discuss the pros and cons of treatment schedules because they are so comfortable with the longer treatment.”

One reason they might favor the longer therapy is because they are concerned about potential side effects from the higher intensity radiation exposure in the shorter regimen. That can result in scarring and adverse effects for women decades later, he says.

That might explain why more younger women chose the longer, traditional radiation regimen, since they and their doctors may have been more concerned about scarring in their breast tissue later.

But the studies on the shorter course treatment include follow up with women up to 10 years after their therapy, and there’s no strong evidence that such adverse effects occur.

MORE: High-Tech 3D Mammograms Probably Saved This Woman’s Life

In addition, the women choosing the shorter course spent about 10% less in the first year after their treatment than those who opted for the traditional radiation regimen. “The savings in patient time and hassle and spending were really large, so it was a little surprising that more women weren’t using the [shorter course] of radiation,” says Bekelman.

Having data might help, he says, to convince both doctors and patients that when it comes to radiation, less may actually do more — in saving lives, reducing anxiety and inconvenience, and lowering health care costs.

TIME Research

You Asked: What Is My Poo Telling Me?

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Illustration by Peter Oumanski for TIME

Your excrement is illuminating

Some say you are what you eat. But really, you are what you poop. “Not only does stool tell you about the health of your diet, but it shows you how your body’s digestive system is handling the foods you eat,” says Dr. Anish Sheth, a Princeton-based gastroenterologist and author of What’s Your Poo Telling You?

From hemorrhoids to cancer, diseases grave and small often show up first in your feces, Sheth says. And in recent years, health experts have learned your excrement also contains a wealth of information about your microbiome, the world of microscopic organisms that live and support your body’s many internal systems.

Put simply, your poop is a window to your health—even if you don’t consider the view all that appealing.

The first thing to consider when assessing your stool (a practice Dr. Sheth heartily advocates) is consistency, both in terms of physical attributes and regularity. “The ideal stool,” Dr. Sheth says, “has been described as a single soft piece.” You’re looking for something log-ish but not too firm, he continues. Imagine dispensing soft serve ice cream into your toilet, and you’ll have the general, somewhat less delicious idea.

This type of stool indicates you’re getting plenty of water and fiber in your diet. An absence of either can produce firmer, broken-up, difficult-to-expel feces or constipation, Sheth says. How hard you have to push is also important, he adds. Ideally, you should “evacuate” your waste with almost zero effort and feel as though you’ve fully emptied yourself.

Of course, everyone has the occasional bout of diarrhea or too-firm poo. But Sheth says neither should worry you much if it happens just once or twice before you’re back to normal. If a week passes without you passing healthy-looking stool, you should speak with a doctor. Even if you’re taking a number-two every day, hard or broken-apart poop is a sign that your diet is probably too low in fiber or water, which can lead to all sorts of gastrointestinal (GI) tract issues, Sheth says.

The color of your feces is also important. If it appears black or tarry, that may be evidence of blood. “The darker the stool, the higher up in your GI tract the blood is likely coming from,” Sheth says. He explains that blood emanating from ulcers or stomach problems will darken as it passes through your digestive system.

If you see maroon or dark red hues or streaks in your poop, that could mean inflammation, colitis, or certain intestinal cancers, Sheth explains. Bright red blood often indicates hemorrhoids or problems localized very near your anus.

Even the buoyancy of your bowel movements can reveal concerns. If your poop usually floats, that may signal an issue with your body’s ability to absorb fat, which in turn might mean your pancreas is having problems, Sheth says. Some particularly bad odors could also be red flags for health issues, although you probably wouldn’t know them if you smelled them. “Some doctors can identify certain GI diseases just by the distinct smell, although people who don’t diagnose them all the time wouldn’t be able to,” Sheth explains.

To keep your poop and your health in top form, Sheth recommends a diet than includes, again, plenty of fiber. “The average American gets about nine grams of fiber a day, when you need 25,” he says. He recommends lots of whole grains, fruits, vegetables, legumes and seeds like flax or chia. “Throw those in a daily smoothie,” he suggests. “And look before you flush!”

TIME

One Great Act of Holiday Kindness

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Manuel Sanchez-Paniagua learns to work the slate on the set of Criminal Minds Cliff Lipson; CBS

Jeffrey Kluger is Editor at Large for TIME.

A hit TV show does a very good thing for a very sick child

If you’re not fed up with the human species yet, it’s probably because you haven’t been paying attention. There are our wars for one thing. According to the Institute for Economics and Peace, of 162 countries surveyed, only 11 are not currently involved in some kind of armed conflict or full-scale combat.

There are our sectarian messes, too. Enjoy the ugly racial tensions sparked by the Ferguson and Staten Island non-indictments of white police officers who killed unarmed black men? Then you’ll love the far less defensible nativist uprising in Dresden, where weekly demonstrations are being staged to protest the imagined “Islamization” of the country, despite the fact that only 2% of the population of Germany’s entire Saxony region is made up of immigrants and only a small minority of them are Muslims. Then there are our drug gangs and street gangs and corrupt politicians and crooked bankers and all of the manifold reprobates who work their manifold harms on everybody else.

And then, just when you’ve had it, just when you’re really, truly, ready to wash your hands of the whole savage lot of us, somebody does something sweet and compassionate and wonderfully caring, and you’re willing to give the species one more chance. Which brings me to Manuel Sanchez Paniagua, the cast of the show Criminal Minds, and—yes, damn it—Christmas.

Manuel deserves a good Christmas season more than most. He is only 15, lives in Mexico City with his family and has been battling cancer for close to two years now—which is an awfully big piece of your life when you’re so young. (He is also—full disclosure—a member of my wife’s family.) Manuel’s illness began in January 2013 with a liver tumor which required three separate surgeries at Boston Children’s Hospital, the last of which was described by the lead doctor as “one of the most difficult in the history of the hospital.”

That was followed by three rounds of chemotherapy and—as is often the case with cancer—a blissful remission, leading his family to hope that Manuel had been cured. As is often the case with cancer too, however, those hopes collapsed.

In September, he suffered a seizure in Mexico and was rushed back to Boston, where his doctors found a brain metastasis. This time there would be more-aggressive treatments, and this time his parents would hear what every parent of a sick boy or girl dreads hearing, which is that just in case, if things turn worse, it might be time to think about granting your child some long-held wishes. So Manuel’s parents asked him what his wish was and he said he wanted to visit the set of Criminal Minds.

There aren’t a whole lot of people who haven’t thought about what they’d choose in such a situation, and the folks who’d pick a Polynesian beach house or a tour of Machu Picchu indulge in more than a little elitist sniffing when they hear of people who’d pick the Grand Canyon or Yankees training camp. The cancer romance The Fault in Our Stars made much of this idea, with Augustus Waters affecting shock that Hazel Grace Lancaster chose a trip to Disneyworld with her parents. “‘I can’t believe I have a crush on a girl with such cliché wishes!” he says.

But a wish, of course, is a reflection of a moment—who you are when you must make the choice. And when the number of moments you have left to you is in question, you choose what will make you happy right now, today. So Manuel chose Criminal Minds—and the cast and crew and production office made it happen.

Just before Thanksgiving, he and his family flew to Los Angeles to be present for the shooting of the series’ Dec. 10 episode. Joe Mantegna, the show’s biggest name, was directing that episode and he kept Manuel busy, dispatching him onto the set to work the slate, explaining scenes as he directed them, eating lunch with him during a break. Manuel met the rest of the cast, posed for photos with them and visited the writers’ room—a pretty static place if you’re not one of the show’s many rabid fans; Xanadu if you are.

None of what Manuel experienced in the six hours he was on-set will make a lick of difference in his prognosis—unless, of course, it does. Scientists have never fully understood the multiple ways optimism and hope and just plain being happy can help humans battle disease—except to say with near-certainty that they can.

Just as important is what the small act of kindness that came Manuel’s way—and a million-million others like it that are performed around the world every day—say about the prognosis for the human condition. Evil is vulgar, broad-brush stuff—the dark, mindless business of burning things down or blowing them up. Kindness is pointillist—bright dots of good, dabbed and dabbed and dabbed again. No single one of them amounts to very much. But a million-million every day? That can create an awfully beautiful picture.

TIME Ideas hosts the world's leading voices, providing commentary and expertise on the most compelling events in news, society, and culture. We welcome outside contributions. To submit a piece, email ideas@time.com.

TIME Cancer

Why Smoking Causes Cancer In More Men Than Women

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Stubbed out cigarette in ashtray. Getty Images/OJO Images RF— Adam Gault

Yet another motivation for men to quit smoking

Men who smoke may be at greater risk for lung cancer than their female counterparts, according to a new study in the journal Science.

That might be because smoking reduces the number of Y chromosomes in blood cells. Previous research has shown that when blood cells lose Y chromosomes, which are only present in men, cancer is more likely to develop. While the precise relationship between Y chromosomes and cancer remains unclear, Y chromosomes are thought to play a role in tumor containment.

The study, led by a team at the Uppsala University in Sweden, examined data on several factors that might have led to a loss of Y chromosomes, including age, exercise, diabetes, cholesterol, education and alcohol. Smoking and age were the only factors associated with loss of Y chromosomes in the more than 6,000 men evaluated.

The study also provides some hope for men who want to quit smoking. Y chromosomes return to the blood cells of men who stop the habit, the study found.

“These results indicate that smoking can cause loss of the Y chromosome and that this process might be reversible,” said lead study author Lars Forsberg in a press release. “This discovery could be very persuasive for motivating smokers to quit.”

The American Cancer Society expects lung cancer to kill nearly 160,000 people in the United States in 2014, more than any other cancer.

TIME Cancer

This Is How Much Movember Raised This Year

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Fewer mustaches, but still a lot of donations

November is over, and so are the scraggly beards and ‘staches that grew as a result of the Movember campaign for men’s health. This year, the campaign had more than 715,000 global participants and raised more than $69 million for research so far.

That’s still less than last year’s tally of $116 million, but funds will keep coming in until early 2015. 2013 also saw a good 200,000 more mustache-growers: a total of 969,188 worldwide.

“We’re realistic and, like any organization, are aware that there will be some years that are stronger than others in terms of participation,” said a Movember spokesperson in an email to TIME. “However, our community has funded more than 800 programs that are making a tangible difference for men’s health.”

Movember also announced that they funded a prostate cancer research breakthrough earlier this year, which allows men to undergo a genetic test that can predict their risk of recurrence. The organization also launched True NTH, a $36 million investment to improve the quality of life of men with prostate cancer.

Funds from this year’s campaign are still incoming, but to date, Movember has raised more than $600 million in its 11 years of existence, thanks to the nearly five million men and women who participated. You can keep an eye on the Movember tally here.

MONEY Health Care

Why a Serious Medical Condition Could Cost You Even More Next Year

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Last Resort—Getty Images

Health insurance plans are hitting you with higher out-of-pocket costs for the specialty drugs you may need, a new study finds.

Americans with health coverage–including those who buy it through government insurance exchanges and Medicare beneficiaries–are likely to pay more out-of-pocket next year for so-called “specialty drugs,” which treat complex conditions, according to two studies from consulting firm Avalere Health.

More than half of the “bronze” plans now being sold to individuals through federal and state marketplaces for coverage that begins in January, for example, require payments of 30% or more of the cost of such drugs, Avalere said in a report out Tuesday. That’s up from 38% of bronze plans this year.

In “silver” level plans, the most commonly purchased exchange plans, 41% will require payments of 30% or more for specialty drugs, up from 27% in 2014.

As the cost of prescription medications rise, insurers are responding by requiring patients to pay a percentage of specialty drug costs, rather than a flat dollar amount, which is often far less. Insurers say the move helps slow premium increases.

But “in some cases this could make it difficult for patients to afford and stay on medications,” Avalere CEO Dan Mendelson said in a written statement.

While there is no standard definition of such drugs outside of the Medicare program, they are often expensive medications used to treat serious, chronic illnesses, such as multiple sclerosis, rheumatoid arthritis, hemophilia, some cancers and hepatitis C. While lists of specialty drugs can differ by insurer and by policy type, drugs can include arthritis treatments Enbrel and Humira, cancer drugs Gleevec and Tarceva, hepatitis C treatment Sovaldi, and MS drugs, Betaseron and Copaxone.

While they add up to only about 1% of all prescriptions written, specialty drugs account for 25% of spending on all drugs—an amount expected to rise rapidly, according to various studies.

An earlier Avalere analysis found that for the first time since Medicare’s drug program began in 2006, all of the stand-alone drug insurance plans place some drugs into specialty “tiers.” Two thirds of those plans require patients to pay a percentage of the costs of drugs in those tiers, rather than a flat dollar payment. Medicare plans can place a product into a specialty category only if the price negotiated with the drugmaker exceeds $600 a month.

Increasingly, health plans –including those offered to people with job-based coverage – require hefty payments, sometimes 20% to 40% or more of the total cost of medications that insurers classify as specialty drugs. That’s a change from the flat dollar payments of $10 to $30 or $50 that many patients have become accustomed to for other types of drugs.

Source: Avalere

There is a limit to how much patients must pay, but it’s often high: Most policies have an annual out of pocket maximum, which is often several thousand dollars.

The new Avalere study looked at plans sold in the federal exchange and in New York and California, which run their own marketplaces.

Kaiser Health News is an editorially independent program of the Henry J. Kaiser Family Foundation, a nonprofit, nonpartisan health policy research and communication organization not affiliated with Kaiser Permanente. This article was produced by Kaiser Health News with support from The SCAN Foundation.

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