Jane C. Wright, Pioneering Oncologist, Dies at 93

Dr. Jane C. Wright, a pioneering oncologist who helped elevate chemotherapy from a last resort for cancer patients to an often viable treatment option, died on Feb. 19 at her home in Guttenberg, N.J. She was 93.

Sophia Smith Collection, Smith College

Dr. Jane C. Wright was the only woman among seven physicians who founded the American Society of Clinical Oncologists.

Her death was confirmed by her daughter Jane Jones, who said her mother had dementia.

Dr. Wright descended from a distinguished medical family that defied racial barriers in a profession long dominated by white men. Her father, Dr. Louis T. Wright, was among the first black graduates of Harvard Medical School and was reported to be the first black doctor appointed to the staff of a New York City hospital. His father was an early graduate of what became the Meharry Medical College, the first medical school in the South for African-Americans, founded in Nashville in 1876.

Dr. Jane Wright began her career as a researcher working alongside her father at a cancer center he established at Harlem Hospital in New York.

Together, they and others studied the effects of a variety of drugs on tumors, experimented with chemotherapeutic agents on leukemia in mice and eventually treated patients, with some success, with new anticancer drugs, including triethylene melamine.

After her father died in 1952, Dr. Wright took over as director of the center, which was known as the Harlem Hospital Cancer Research Foundation. In 1955, she joined the faculty of the New York University Medical Center as director of cancer research, where her work focused on correlating the responses of tissue cultures to anticancer drugs with the responses of patients.

In 1964, working as part of a team at the N.Y.U. School of Medicine, Dr. Wright developed a nonsurgical method, using a catheter system, to deliver heavy doses of anticancer drugs to previously hard-to-reach tumor areas in the kidneys, spleen and elsewhere.

That same year, Dr. Wright was the only woman among seven physicians who, recognizing the unique needs of doctors caring for cancer patients, founded the American Society of Clinical Oncologists, known as ASCO. She was also appointed by President Lyndon B. Johnson to the President’s Commission on Heart Disease, Cancer and Stroke, led by the heart surgeon Dr. Michael E. DeBakey. Its recommendations emphasized better communication among doctors, hospitals and research institutions and resulted in a national network of treatment centers.

In 1967, Dr. Wright became head of the chemotherapy department and associate dean at New York Medical College. News reports at the time said it was the first time a black woman had held so high a post at an American medical school.

“Not only was her work scientific, but it was visionary for the whole science of oncology,” Dr. Sandra Swain, the current president of ASCO, said in a telephone interview. “She was part of the group that first realized we needed a separate organization to deal with the providers who care for cancer patients. But beyond that, it’s amazing to me that a black woman, in her day and age, was able to do what she did.”

Jane Cooke Wright was born in Manhattan on Nov. 30, 1919. Her mother, the former Corinne Cooke, was a substitute teacher in the New York City schools.

Ms. Wright attended the Ethical Culture school in Manhattan and the Fieldston School in the Bronx (now collectively known Ethical Culture Fieldston School) and graduated from Smith College, where she studied art before turning to medicine. She received a full scholarship to New York Medical College, earning her medical degree in 1945. Before beginning research with her father, she worked as a doctor in city schools.

Dr. Wright married David D. Jones, a lawyer, in 1947; he died in 1976. In addition to their daughter Jane, she is survived by another daughter, Alison Jones; and a sister, Dr. Barbara Wright Pierce.

As both a student and a doctor, Dr. Wright said in interviews, she was always aware that as a black woman she was an unusual presence in medical institutions. But she never felt she was a victim of racial prejudice, she said.

“I know I’m a member of two minority groups,” she said in an interview with The New York Post in 1967, “but I don’t think of myself that way. Sure, a woman has to try twice as hard. But — racial prejudice? I’ve met very little of it.”

She added, “It could be I met it — and wasn’t intelligent enough to recognize it.”

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Well: A Rainbow of Root Vegetables

This week’s Recipes for Health is as much a treat for the eyes as the palate. Colorful root vegetables from bright orange carrots and red scallions to purple and yellow potatoes and pale green leeks will add color and flavor to your table.

Since root vegetables and tubers keep well and can be cooked up into something delicious even after they have begun to go limp in the refrigerator, this week’s Recipes for Health should be useful. Root vegetables, tubers (potatoes and sweet potatoes, which are called yams by most vendors – I mean the ones with dark orange flesh), winter squash and cabbages are the only local vegetables available during the winter months in colder regions, so these recipes will be timely for many readers.

Roasting is a good place to begin with most root vegetables. They sweeten as they caramelize in a hot oven. I roasted baby carrots and thick red scallions (they may have been baby onions; I didn’t get the information from the farmer, I just bought them because they were lush and pretty) together and seasoned them with fresh thyme leaves, then sprinkled them with chopped toasted hazelnuts. I also roasted a medley of potatoes, including sweet potatoes, after tossing them with olive oil and sage, and got a wonderful range of colors, textures and tastes ranging from sweet to savory.

Sweet winter vegetables also pair well with spicy seasonings. I like to combine sweet potatoes and chipotle peppers, and this time in a hearty lentil stew that we enjoyed all week.

Here are five colorful and delicious dishes made with root vegetables.

Spicy Lentil and Sweet Potato Stew With Chipotles: The combination of sweet potatoes and spicy chipotles with savory lentils is a winner.

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Roasted Carrots and Scallions With Thyme and Hazelnuts: Toasted hazelnuts add a crunchy texture and nutty finish to this dish.

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Carrot Wraps: A vegetarian sandwich that satisfies like a full meal.

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Rainbow Potato Roast: A multicolored mix that can be vegan, or not.

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Leek Quiche: A lighter version of a Flemish classic.

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Global Health: After Measles Success, Rwanda to Get Rubella Vaccine

Rwanda has been so successful at fighting measles that next month it will be the first country to get donor support to move to the next stage — fighting rubella too.

On March 11, it will hold a nationwide three-day vaccination campaign with a combined measles-rubella vaccine, hoping to reach nearly five million children up to age 14. It will then integrate the dual vaccine into its national health service.

Rwanda can do so “because they’ve done such a good job on measles,” said Christine McNab, a spokeswoman for the Measles and Rubella Initiative. M.R.I. helped pay for previous vaccination campaigns in the country and the GAVI Alliance is helping to finance the upcoming one.

Rubella, also called German measles, causes a rash that is very similar to the measles rash, making it hard for health workers to tell the difference.

Rubella is generally mild, even in children, but in pregnant women, it can kill the fetus or cause serious birth defects, including blindness, deafness, mental retardation and chronic heart damage.

Ms. McNab said that Rwanda had proved that it can suppress measles and identify rubella, and it would benefit from the newer, more expensive vaccine.

The dual vaccine costs twice as much — 52 cents a dose at Unicef prices, compared with 24 cents for measles alone. (The MMR vaccine that American children get, which also contains a vaccine against mumps, costs Unicef $1.)

More than 90 percent of Rwandan children now are vaccinated twice against measles, and cases have been near zero since 2007.

The tiny country, which was convulsed by Hutu-Tutsi genocide in 1994, is now leading the way in Africa in delivering medical care to its citizens, Ms. McNab said. Three years ago, it was the first African country to introduce shots against human papilloma virus, or HPV, which causes cervical cancer.

In wealthy countries, measles kills a small number of children — usually those whose parents decline vaccination. But in poor countries, measles is a major killer of malnourished infants. Around the world, the initiative estimates, about 158,000 children die of it each year, or about 430 a day.

Every year, an estimated 112,000 children, mostly in Africa, South Asia and the Pacific islands, are born with handicaps caused by their mothers’ rubella infection.

Thanks in part to the initiative — which until last year was known just as the Measles Initiative — measles deaths among children have declined 71 percent since 2000. The initiative is a partnership of many health agencies, vaccine companies, donors and others, but is led by the American Red Cross, the United Nations Foundation, the Centers for Disease Control and Prevention, Unicef and the World Health Organization.

This article has been revised to reflect the following correction:

Correction: March 1, 2013

An article on Tuesday about a coming measles-rubella vaccination campaign in Rwanda misstated the source of the vaccine and some financing for the campaign. The vaccine and financing are being provided by the GAVI Alliance, not by the Measles and Rubella Initiative.

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Global Health: After Measles Success, Rwanda to Get Rubella Vaccine

Rwanda has been so successful at fighting measles that next month it will be the first country to get donor support to move to the next stage — fighting rubella too.

On March 11, it will hold a nationwide three-day vaccination campaign with a combined measles-rubella vaccine, hoping to reach nearly five million children up to age 14. It will then integrate the dual vaccine into its national health service.

Rwanda can do so “because they’ve done such a good job on measles,” said Christine McNab, a spokeswoman for the Measles and Rubella Initiative. M.R.I. helped pay for previous vaccination campaigns in the country and the GAVI Alliance is helping to finance the upcoming one.

Rubella, also called German measles, causes a rash that is very similar to the measles rash, making it hard for health workers to tell the difference.

Rubella is generally mild, even in children, but in pregnant women, it can kill the fetus or cause serious birth defects, including blindness, deafness, mental retardation and chronic heart damage.

Ms. McNab said that Rwanda had proved that it can suppress measles and identify rubella, and it would benefit from the newer, more expensive vaccine.

The dual vaccine costs twice as much — 52 cents a dose at Unicef prices, compared with 24 cents for measles alone. (The MMR vaccine that American children get, which also contains a vaccine against mumps, costs Unicef $1.)

More than 90 percent of Rwandan children now are vaccinated twice against measles, and cases have been near zero since 2007.

The tiny country, which was convulsed by Hutu-Tutsi genocide in 1994, is now leading the way in Africa in delivering medical care to its citizens, Ms. McNab said. Three years ago, it was the first African country to introduce shots against human papilloma virus, or HPV, which causes cervical cancer.

In wealthy countries, measles kills a small number of children — usually those whose parents decline vaccination. But in poor countries, measles is a major killer of malnourished infants. Around the world, the initiative estimates, about 158,000 children die of it each year, or about 430 a day.

Every year, an estimated 112,000 children, mostly in Africa, South Asia and the Pacific islands, are born with handicaps caused by their mothers’ rubella infection.

Thanks in part to the initiative — which until last year was known just as the Measles Initiative — measles deaths among children have declined 71 percent since 2000. The initiative is a partnership of many health agencies, vaccine companies, donors and others, but is led by the American Red Cross, the United Nations Foundation, the Centers for Disease Control and Prevention, Unicef and the World Health Organization.

This article has been revised to reflect the following correction:

Correction: February 27, 2013

An earlier version of this article misstated the source of the vaccine and some financing for the campaign. The vaccine and financing is being provided by the GAVI Alliance, not the Measles and Rubella Initiative.

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Advanced Breast Cancer May Be Rising Among Young Women, Study Finds

The incidence of advanced breast cancer among younger women, ages 25 to 39, may have increased slightly over the last three decades, according to a study released Tuesday.

But more research is needed to verify the finding, which was based on an analysis of statistics, the study’s authors said. They do not know what may have caused the apparent increase.

Some outside experts questioned whether the increase was real, and expressed concerns that the report would frighten women needlessly.

The study, published in The Journal of the American Medical Association, found that advanced cases climbed to 2.9 per 100,000 younger women in 2009, from 1.53 per 100,000 women in 1976 — an increase of 1.37 cases per 100,000 women in 34 years. The totals were about 250 such cases per year in the mid-1970s, and more than 800 per year in 2009.

Though small, the increase was statistically significant, and the researchers said it was worrisome because it involved cancer that had already spread to organs like the liver or lungs by the time it was diagnosed, which greatly diminishes the odds of survival.

For now, the only advice the researchers can offer to young women is to see a doctor quickly if they notice lumps, pain or other changes in the breast, and not to assume that they cannot have breast cancer because they are young and healthy, or have no family history of the disease.

“Breast cancer can and does occur in younger women,” said Dr. Rebecca H. Johnson, the first author of the study and medical director of the adolescent and young adult oncology program at Seattle Children’s Hospital.

But Dr. Johnson noted that there is no evidence that screening helps younger women who have an average risk for the disease and no symptoms. “We’re certainly not advocating that young women get mammography at an earlier age than is generally specified,” she said.

Expert groups differ about when screening should begin; some say at age 40, others 50.

Breast cancer is not common in younger women; only 1.8 percent of all cases are diagnosed in women from 20 to 34, and 10 percent in women from 35 to 44. However, when it does occur, the disease tends to be more deadly in younger women than in older ones. Researchers are not sure why.

The researchers analyzed data from SEER, a program run by the National Cancer Institute to collect cancer statistics on 28 percent of the population of the United States. The study also used data from the past when SEER was smaller.

The study is based on information from 936,497 women who had breast cancer from 1976 to 2009. Of those, 53,502 were 25 to 39 years old, including 3,438 who had advanced breast cancer, also called metastatic or distant disease.

Younger women were the only ones in whom metastatic disease seemed to have increased, the researchers found.

Dr. Archie Bleyer, a clinical research professor in radiation medicine at the Knight Cancer Institute at the Oregon Health and Science University in Portland who helped write the study, said scientists needed to verify the increase in advanced breast cancer in young women in the United States and find out whether it is occurring in other developed Western countries. “This is the first report of this kind,” he said, adding that researchers had already asked colleagues in Canada to analyze data there.

“We need this to be sure ourselves about this potentially concerning, almost alarming trend,” Dr. Bleyer said. “Then and only then are we really worried about what is the cause, because we’ve got to be sure it’s real.”

Dr. Johnson said her own experience led her to look into the statistics on the disease in young women. She had breast cancer when she was 27; she is now 44. Over the years, friends and colleagues often referred young women with the disease to her for advice.

“It just struck me how many of those people there were,” she said.

Dr. Donald A. Berry, an expert on breast cancer data and a professor of biostatistics at the University of Texas’ M. D. Anderson Cancer Center in Houston, said he was dubious about the finding, even though it was statistically significant, because the size of the apparent increase was so small — 1.37 cases per 100,000 women, over the course of 30 years.

More screening and more precise tests to identify the stage of cancer at the time of diagnosis might account for the increase, he said.

“Not many women aged 25 to 39 get screened, but some do, but it only takes a few to account for a notable increase from one in 100,000,” Dr. Berry said.

Dr. Silvia C. Formenti, a breast cancer expert and the chairwoman of radiation oncology at New York University Langone Medical Center, questioned the study in part because although it found an increased incidence of advanced disease, it did not find the accompanying increase in deaths that would be expected.

A spokeswoman for an advocacy group for young women with breast cancer, Young Survival Coalition, said the organization also wondered whether improved diagnostic and staging tests might explain all or part of the increase.

“We’re looking at this data with caution,” said the spokeswoman, Michelle Esser. “We don’t want to invite panic or alarm.”

She said it was important to note that the findings applied only to women who had metastatic disease at the time of diagnosis, and did not imply that women who already had early-stage cancer faced an increased risk of advanced disease.

Dr. J. Leonard Lichtenfeld
, deputy chief medical officer of the American Cancer Society, said he and an epidemiologist for the society thought the increase was real.

“We want to make sure this is not oversold or that people suddenly get very frightened that we have a huge problem,” Dr. Lichtenfeld said. “We don’t. But we are concerned that over time, we might have a more serious problem than we have today.”

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Global Health: After Measles Success, Rwanda to Get Rubella Vaccine

Rwanda has been so successful at fighting measles that next month it will be the first country to get donor support to move to the next stage — fighting rubella too.

On March 11, it will hold a nationwide three-day vaccination campaign with a combined measles-rubella vaccine, hoping to reach nearly five million children up to age 14. It will then integrate the dual vaccine into its national health service.

Rwanda can do so “because they’ve done such a good job on measles,” said Christine McNab, a spokeswoman for the Measles and Rubella Initiative, which will provide the vaccine and help pay for the campaign.

Rubella, also called German measles, causes a rash that is very similar to the measles rash, making it hard for health workers to tell the difference.

Rubella is generally mild, even in children, but in pregnant women, it can kill the fetus or cause serious birth defects, including blindness, deafness, mental retardation and chronic heart damage.

Ms. McNab said that Rwanda had proved that it can suppress measles and identify rubella, and it would benefit from the newer, more expensive vaccine.

The dual vaccine costs twice as much — 52 cents a dose at Unicef prices, compared with 24 cents for measles alone. (The MMR vaccine that American children get, which also contains a vaccine against mumps, costs Unicef $1.)

More than 90 percent of Rwandan children now are vaccinated twice against measles, and cases have been near zero since 2007.

The tiny country, which was convulsed by Hutu-Tutsi genocide in 1994, is now leading the way in Africa in delivering medical care to its citizens, Ms. McNab said. Three years ago, it was the first African country to introduce shots against human papilloma virus, or HPV, which causes cervical cancer.

In wealthy countries, measles kills a small number of children — usually those whose parents decline vaccination. But in poor countries, measles is a major killer of malnourished infants. Around the world, the initiative estimates, about 158,000 children die of it each year, or about 430 a day.

Every year, an estimated 112,000 children, mostly in Africa, South Asia and the Pacific islands, are born with handicaps caused by their mothers’ rubella infection.

Thanks in part to the initiative — which until last year was known just as the Measles Initiative — measles deaths among children have declined 71 percent since 2000. The initiative is a partnership of many health agencies, vaccine companies, donors and others, but is led by the American Red Cross, the United Nations Foundation, the Centers for Disease Control and Prevention, Unicef and the World Health Organization.

Read More..

Off the Dribble: Salley Offers a Healthy Assist

When Carmelo Anthony went on a vegetarian diet a few weeks ago and caused the biggest culinary conundrum in sports since fried chicken and beer had starring roles in the Red Sox clubhouse, John Salley could only shake his head.

Anthony’s diet was blamed for his sluggish play and the Knicks’ 3-4 record during the 15-day fast.

Anthony admitted that his body felt “depleted out there.”

But Salley, the former N.B.A. player, said that if Anthony had eaten a vegetarian diet correctly, he would have felt invigorated and anything but depleted.

And not just for two weeks but for the entire season.

For Salley, many of his salad days in the N.B.A. really were salad days. Particularly kale salad.

Salley, a 6-foot-11 power forward and center, became a vegetarian in January 1991 after he felt he had to make changes in his lifestyle, much like Anthony’s stated desire for “clarity in his life.”

Vegetarians do not eat meat, fish or poultry, but may eat dairy products like cheese, eggs, yogurt or milk.

Salley had read a story about the Celtics’ Robert Parish, whom he had always admired, and his interest in yoga and a red-meat-free diet.

While Parish’s regimen was not total vegetarian, he recently said that it made a difference in his career, helping him withstand the rigors of playing center against behemoths in the paint.

“My diet consisted of chicken, fish, seafood, salad, pasta and organic when possible,” he said. “I had very little sugar and drank a gallon of water every day. I also ate rice and beans, peas, cabbage, mustard, collards greens and assorted nuts. I would always focus on healthy eating. My success depended on my body and I tried to do right by it. ”

His body responded with 20 years of service in his Hall of Fame career. Parish retired at 43.

Salley was striving for similar health and success.

“I was 27, and I felt I had to change my life,” Salley said. “My knees were sore, my joints ached, I had back problems and my cholesterol was 275. ”

When he was with the Pistons, Salley visited a nutritionist in Detroit who advised him to eliminate fried foods and adopt a macrobiotic diet (grains and vegetables).

Salley, invigorated and healthy, had his best season in 1991. A defensive specialist, he had more energy and quickness and averaged a career best 9.5 points a game.

He kept his healthy diet a secret from his burly Bad Boy Piston steak-and-pork-chop teammates, who included Bill Laimbeer, Rick Mahorn and Dennis Rodman.

“I would tell them all the time,” Salley said, “if you go into a steak house it’s not that they have a certain thing inside the dead flesh or they cook it differently. They make it the same way everybody else does. All you’re doing is eating dead food.”

Salley would search out health food restaurants with a few tables or just counter service for his diet staples of quinoa, kale, spinach, stir fried vegetables, brown rice and wheatgrass on the menu.

“It was hard to find places in 1991,” he said. “So many times I would go into restaurants and ask the cook to steam my vegetables and make me the lightest fish.”

But it was worth it.

“I was playing so well it was crazy,” he said.

During his career, Salley, who retired in 2000, won four championships with the Detroit Pistons, the Chicago Bulls and the Los Angeles Lakers.

He now follows a vegan diet, which eliminates all dairy foods in addition to animal products.

“I’m eating raw,” said Salley, 48. “And I make all my food with no sugar, no salt and no oil.”

Salley is familiar with Anthony’s foray into vegetarian living. The Knicks star followed the Daniel Fast based on the book of Daniel in the Bible, which espouses a diet of mainly liquid and vegetables.

“He felt depleted because you need to find a natural source of vitamin B12,” Salley said.

B12 is not found in any significant amounts in plant food, and a deficiency can cause fatigue, weakness and tingling in the legs.

It can also cause irritability. Anthony said his diet might have caused him to lash out at Kevin Garnett in a game against the Boston Celtics.

“He didn’t take any supplements to help his body,” Salley said. “He did not get his body to heal. It’s like cutting yourself and not putting a Band-Aid on. He just got part of the plan right.”

Salley is working to make sure children get the plan right with food choices. He spreads the word about healthy eating in the community, having lobbied Congress for more vegetarian options in school lunches.

Although Anthony may have struggled to maintain his vegetarian diet, other N.B.A players and athletes have embraced it.

James Jones of the Miami Heat and Anthony’s teammate A’mare Stoudemire are vegetarians.

Baseball’s Prince Fielder, the triathlete Brendan Brazier, the mixed martial artist Mac Danzig, the bodybuilder Derek Tresize and the tennis player Serena Williams are among athletes who are vegans or vegetarians.

Dr. Joel Kahn, a clinical professor of medicine at Wayne State University School of Medicine and medical director of wellness programs, preventive cardiology, and cardiac rehabilitation at Detroit Medical Center, has counseled Salley and other athletes about the benefits of vegan and vegetarian diets.

“A plant-based, whole-food diet low on sugar and gluten is very anti-inflammatory and ideal for rapid recovery from workouts,” he said.

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Well: Savory Pie Recipes for Health

Pie is an indulgence often saved for holiday time. But this week Martha Rose Shulman shows us how to bake a pie and eat it too, without the guilt. She offers savory vegetable pies, showcased in whole grain crusts. She writes:

This week I slowed down and made pies: savory ones filled with vegetables … I used a number of different crusts for my winter pies. My favorite remains the whole wheat yeasted olive oil crust that I have used before in this column, but I also worked with a simple Mediterranean crust made with a mix of whole wheat flour, all-purpose flour and olive oil. And for those of you who are gluten-free, I made another foray into gluten-free pastry and produced one I liked a lot, which was a mix of buckwheat flour, millet flour and potato starch. It had a strong nutty flavor that worked well with a very savory, very vegan, tofu and mushroom “quiche.” They are all simple to mix together and easy to roll or press out. And if you don’t feel like dealing with a crust, just use Greek phyllo. The important things, after all, are the savory vegetables inside.

Here are recipes for a pie crust and four savory winter vegetable pies.

Whole Wheat Mediterranean Pie Crust: A simple Mediterranean crust made with a mix of whole wheat flour, all-purpose flour and olive oil.

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Mixed Greens Galette With Onions and Chickpeas: A tasty way to use bagged greens in a dish with Middle Eastern overtones.

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Goat Cheese, Chard and Herb Pie in a Phyllo Crust: A garlicky mix of greens and your choice of herbs inside a crispy phyllo crust.

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Tofu Mushroom ‘Quiche’: A vegan dish with a deep, rich flavor.

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Winter Tomato Quiche: Canned tomatoes can be used in the off season for a delicious dinner.

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Living With Cancer: Arrivals and Departures

After being nursed and handed over, the baby’s wails rise to a tremolo, but I am determined to give my exhausted daughter and son-in-law a respite on this wintry evening. Commiserating with the little guy’s discomfort — gas, indigestion, colic, ontological insecurity — I swaddle, burp, bink, then cradle him in my arms. I begin walking around the house, swinging and swaying while cooing in soothing cadences: “Yes, darling boy, another one bites the dust, another one bites the dust.”

I kid you not! How could such grim phrases spring from my lips into the newborn’s ears? Where did they come from?

I blame his mother and her best friend. They sang along as this song was played repeatedly at the skating rink to which I took them every other Saturday in their tweens. Why would an infatuated grandma croon a mordant lullaby, even if the adorable one happily can’t understand a single word? He’s still whimpering, twisting away from me, and understandably so.

Previously that day, I had called a woman in my cancer support group. I believe that she is dying. I do not know her very well. She has attended only two or three of our get-togethers where she described herself as a widow and a Christian.

On the phone, I did not want to violate the sanctity of her end time, but I did want her to know that she need not be alone, that I and other members of our group can “be there” for her. Her dying seems a rehearsal of my own. We have the same disease.

“How are you doing, Kim?” I asked.

“I’m tired. I sleep all the time,” she sighed, “and I can’t keep anything down.”

“Can you drink … water?” I asked.

“A little, but I tried a smoothie and it wouldn’t set right,” she said.

“I hope you are not in pain.”

“Oh no, but I’m sleeping all the time. And I can’t keep anything down.”

“Would you like a visit? Is there something I can do or bring?” I asked.

“Oh, I don’t think so, no thanks.”

“Well,” I paused before saying goodbye, “be well.”

Be well? I didn’t even add something like, “Be as well as you can be.” I was tongue-tied. This was the failure that troubles me tonight.

Why couldn’t I say that we will miss her, that I am sorry she is dying, that she has coped so well for so long, and that I hope she will now find peace? I could inform an infant in my arms of our inexorable mortality, but I could not speak or even intimate the “D” word to someone on her deathbed.

Although I have tried to communicate to my family how I feel about end-of-life care, can we always know what we will want? Perhaps at the end of my life I will not welcome visitors, either. For departing may require as much concentration as arriving. As I look down at the vulnerable bundle I am holding, I marvel that each and every one of us has managed to come in and will also have to manage to go out. The baby nestles, pursing his mouth around the pacifier. He gazes intently at my face with a sly gaze that drifts toward a lamp, turning speculative before lids lower in tremulous increments.

Slowing my jiggling to his faint sucking, I think that the philosopher Jacques Derrida’s meditation on death pertains to birth as well. Each of these events “names the very irreplaceability of absolute singularity.” Just as “no one can die in my place or in the place of the other,” no one can be born in this particular infant’s place. He embodies his irreplaceable and absolute singularity.

Perhaps we should gestate during endings, as we do during beginnings. Like hatchings, the dispatchings caused by cancer give people like Kim and me a final trimester, more or less, in which we can labor to forgive and be forgiven, to speak and hear vows of devotion from our intimates, to visit or not be visited by acquaintances.

Maybe we need a doula for dying, I reflect as melodious words surface, telling me what I have to do with the life left to be lived: “To love that well, which thou must leave ere long.”

“Oh little baby,” I then whisper: “Though I cannot tell who you will become and where I will be — you, dear heart, deliver me.”

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Susan Gubar is a distinguished emerita professor of English at Indiana University and the author of “Memoir of a Debulked Woman,” which explores her experience with ovarian cancer.

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Well: Caffeine Linked to Lower Birth Weight Babies

New research suggests that drinking caffeinated drinks during pregnancy raises the risk of having a low birth weight baby.

Caffeine has long been linked to adverse effects in pregnant women, prompting many expectant mothers to give up coffee and tea. But for those who cannot do without their morning coffee, health officials over the years have offered conflicting guidelines on safe amounts during pregnancy.

The World Health Organization recommends a limit of 300 milligrams of caffeine a day, equivalent to about three eight-ounce cups of regular brewed coffee. The American College of Obstetricians and Gynecologists stated in 2010 that pregnant women could consume up to 200 milligrams a day without increasing their risk of miscarriage or preterm birth.

In the latest study, published in the journal BMC Medicine, researchers collected data on almost 60,000 pregnancies over a 10-year period. After excluding women with potentially problematic medical conditions, they found no link between caffeine consumption – from food or drinks – and the risk of preterm birth. But there was an association with low birth weight.

For a child expected to weigh about eight pounds at birth, the child lost between three-quarters of an ounce to an ounce in birth weight for each 100 milligrams of average daily caffeine intake from all sources by the mother. Even after the researchers excluded from their analysis smokers, a group that is at higher risk for complications and also includes many coffee drinkers, the link remained.

One study author, Dr. Verena Sengpiel of the Sahlgrenska University Hospital in Sweden, said the findings were not definitive because the study was observational, and correlation does not equal causation. But they do suggest that women might put their caffeine consumption “on pause” while pregnant, she said, or at least stay below two cups of coffee per day.

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This post has been revised to reflect the following correction:

Correction: February 20, 2013

An earlier version of this article described incorrectly the relationship between the amount of caffeine a pregnant woman drank and birth weight. For a child expected to weigh about eight pounds at birth, the child lost between three-quarters of an ounce to an ounce in birth weight for each 100 milligrams of average daily caffeine intake by the mother, not for each day that she consumed 100 milligrams of caffeine.

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DNA Analysis, More Accessible Than Ever, Opens New Doors

Matt Roth for The New York Times

Sam Bosley of Frederick, Md., going shopping with his daughter, Lillian, 13, who has a malformed brain and severe developmental delays, seizures and vision problems. More Photos »

Debra Sukin and her husband were determined to take no chances with her second pregnancy. Their first child, Jacob, who had a serious genetic disorder, did not babble when he was a year old and had severe developmental delays. So the second time around, Ms. Sukin had what was then the most advanced prenatal testing.

The test found no sign of Angelman syndrome, the rare genetic disorder that had struck Jacob. But as months passed, Eli was not crawling or walking or babbling at ages when other babies were.

“Whatever the milestones were, my son was not meeting them,” Ms. Sukin said.

Desperate to find out what is wrong with Eli, now 8, the Sukins, of The Woodlands, Tex., have become pioneers in a new kind of testing that is proving particularly helpful in diagnosing mysterious neurological illnesses in children. Scientists sequence all of a patient’s genes, systematically searching for disease-causing mutations.

A few years ago, this sort of test was so difficult and expensive that it was generally only available to participants in research projects like those sponsored by the National Institutes of Health. But the price has plunged in just a few years from tens of thousands of dollars to around $7,000 to $9,000 for a family. Baylor College of Medicine and a handful of companies are now offering it. Insurers usually pay.

Demand has soared — at Baylor, for example, scientists analyzed 5 to 10 DNA sequences a month when the program started in November 2011. Now they are doing more than 130 analyses a month. At the National Institutes of Health, which handles about 300 cases a year as part of its research program, demand is so great that the program is expected to ultimately take on 800 to 900 a year.

The test is beginning to transform life for patients and families who have often spent years searching for answers. They can now start the grueling process with DNA sequencing, says Dr. Wendy K. Chung, professor of pediatrics and medicine at Columbia University.

“Most people originally thought of using it as a court of last resort,” Dr. Chung said. “Now we can think of it as a first-line test.”

Even if there is no treatment, there is almost always some benefit to diagnosis, geneticists say. It can give patients and their families the certainty of knowing what is wrong and even a prognosis. It can also ease the processing of medical claims, qualifying for special education services, and learning whether subsequent children might be at risk.

“Imagine the people who drive across the whole country looking for that one neurologist who can help, or scrubbing the whole house with Lysol because they think it might be an allergy,” said Richard A. Gibbs, the director of Baylor College of Medicine’s gene sequencing program. “Those kinds of stories are the rule, not the exception.”

Experts caution that gene sequencing is no panacea. It finds a genetic aberration in only about 25 to 30 percent of cases. About 3 percent of patients end up with better management of their disorder. About 1 percent get a treatment and a major benefit.

“People come to us with huge expectations,” said Dr. William A. Gahl, who directs the N.I.H. program. “They think, ‘You will take my DNA and find the causes and give me a treatment.' ”

“We give the impression that we can do these things because we only publish our successes,” Dr. Gahl said, adding that when patients come to him, “we try to make expectations realistic.”

DNA sequencing was not available when Debra and Steven Sukin began trying to find out what was wrong with Eli. When he was 3, they tried microarray analysis, a genetic test that is nowhere near as sensitive as sequencing. It detected no problems.

“My husband and I looked at each other and said, ‘The good news is that everything is fine; the bad news is that everything is not fine,' ” Ms. Sukin said.

In November 2011, when Eli was 6, Ms. Sukin consulted Dr. Arthur L. Beaudet, a medical geneticist at Baylor.

“Is there a protein missing?” she recalled asking him. “Is there something biochemical we could be missing?”

By now, DNA sequencing had come of age. Dr. Beaudet said that Eli was a great candidate, and it turned out that the new procedure held an answer.

A single DNA base was altered in a gene called CASK, resulting in a disorder so rare that there are fewer than 10 cases in all the world’s medical literature.

“It really became definitive for my husband and me,” Ms. Sukin said. “We would need to do lifelong planning for dependent care for the rest of his life.”

This article has been revised to reflect the following correction:

Correction: February 20, 2013

An article on Tuesday about the use of DNA sequencing to identify rare genetic diseases misstated the name of a medicine taken by two teenagers who have a rare gene mutation. The drug is 5-hydroxytryptophan, not 5-hydroxytryptamine.

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Personal Health: Health Effects of Smoking for Women

The title of a recent report on smoking and health might well have paraphrased the popular ad campaign for Virginia Slims, introduced in 1968 by Philip Morris and aimed at young professional women: “You’ve come a long way, baby.”

Today that slogan should include: “. . . toward a shorter life.” Ten years shorter, in fact.

The new report is one of two rather shocking analyses of the hazards of smoking and the benefits of quitting published last month in The New England Journal of Medicine. The data show that “women who smoke like men die like men who smoke,” Dr. Steven A. Schroeder, a professor of health and health care at the University of California, San Francisco, wrote in an accompanying editorial.

That was not always the case. Half a century ago, the risk of death from lung cancer among men who smoked was five times higher than that among women smokers. But by the first decade of this century, that risk had equalized: for both men and women who smoked, the risk of death from lung cancer was 25 times greater than for nonsmokers, Dr. Michael J. Thun of the American Cancer Society and his colleagues reported.

Today, women who smoke are even more likely than men who smoke to die of lung cancer. According to a second study in the same journal, women smokers face a 17.8 times greater risk of dying of lung cancer, than women who do not smoke; men who smoke are at 14.6 times greater risk to die of lung cancer than men who don’t. Women who smoke now face a risk of death from lung cancer that is 50 percent higher than the estimates reported in the 1980s, according to Dr. Prabhat Jha of the Center for Global Health Research in Toronto and his colleagues.

After controlling for age, body weight, education level and alcohol use, the new analysis found something else: men and women who continue to smoke die on average more than 10 years sooner than those who never smoked.

Dramatic progress has been made in reducing the prevalence of smoking, which has fallen in the United States from 42 percent of adults in 1965 (the year after the first surgeon general’s report on smoking and health) to 19 percent in 2010. Yet smoking still results in nearly 200,000 deaths a year among people 35 to 69 years old in this country. A quarter of all deaths in this age group would not occur if smokers had the same risk of death as nonsmokers.

The risks are even greater among men 55 to 74 and women 60 to 74. More than two-thirds of all deaths among current smokers in these age groups are related to smoking. Over all, the death rate from all causes combined in these age groups “is now at least three times as high among current smokers as among those who have never smoked,” Dr. Thun’s team found.

While lung cancer is the most infamous hazard linked to smoking, the habit also raises the risk of death from heart disease, stroke, pulmonary disease and other cancers, including breast cancer.

Furthermore, changes in how cigarettes are manufactured may have increased the dangers of smoking. The use of perforated filters, tobacco blends that are less irritating, and paper that is more porous made it easier to inhale smoke and encouraged deeper inhalation to achieve satisfying blood levels of nicotine.

The result of deeper inhalation, Dr. Thun’s report suggests, has been an increased risk of chronic obstructive pulmonary disease, or C.O.P.D., and a shift in the kind of lung cancer linked to smoking. Among nonsmokers, the risk of death from C.O.P.D. has declined by 45 percent in men and has remained stable in women, but the death rate has more than doubled among smokers.

But there is good news, too: it’s never too late to reap the benefits of quitting. The younger you are when you stop smoking, the greater your chances of living a long and healthy life, according to the findings of Dr. Jha’s international team.

The team analyzed smoking and smoking-cessation histories of 113,752 women and 88,496 men 25 and older and linked them to causes of deaths in these groups through 2006.

Those who quit smoking by age 34 lived 10 years longer on average than those who continued to smoke, giving them a life expectancy comparable to people who never smoked. Smokers who quit between ages 35 and 44 lived nine years longer, and those who quit between 45 and 54 lived six years longer. Even quitting smoking between ages 55 and 64 resulted in a four-year gain in life expectancy.

The researchers emphasized, however, that the numbers do not mean it is safe to smoke until age 40 and then stop. Former smokers who quit by 40 still experienced a 20 percent greater risk of death than nonsmokers. About one in six former smokers who died before the age of 80 would not have died so young if he or she had never smoked, they reported.

Dr. Schroeder believes we can do a lot better to reduce the prevalence of smoking with the tools currently in hand if government agencies, medical insurers and the public cooperate.

Unlike the races, ribbons and fund-raisers for breast cancer, “there’s no public face for lung cancer, even though it kills more women than breast cancer does,” Dr. Schroeder said in an interview. Lung cancer is stigmatized as a disease people bring on themselves, even though many older victims were hooked on nicotine in the 1940s and 1950s, when little was known about the hazards of smoking and doctors appeared in ads assuring the public it was safe to smoke.

Raising taxes on cigarettes can help. The states with the highest prevalence of smoking have the lowest tax rates on cigarettes, Dr. Schroeder said. Also helpful would be prohibiting smoking in more public places like parks and beaches. Some states have criminalized smoking in cars when children are present.

More “countermarketing” of cigarettes is needed, he said, including antismoking public service ads on television and dramatic health warnings on cigarette packs, as is now done in Australia. But two American courts have ruled that the proposed label warnings infringed on the tobacco industry’s right to free speech.

Health insurers, both private and government, could broaden their coverage of stop-smoking aids and better publicize telephone quit lines, and doctors “should do more to stimulate quit attempts,” Dr. Schroeder said.

As Nicola Roxon, a former Australian health minister, put it, “We are killing people by not acting.”

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Livestrong Tattoos as Reminder of Personal Connections, Not Tarnished Brand

As Jax Mariash went under the tattoo needle to have “Livestrong” emblazoned on her wrist in bold black letters, she did not think about Lance Armstrong or doping allegations, but rather the 10 people affected by cancer she wanted to commemorate in ink. It was Jan. 22, 2010, exactly a year since the disease had taken the life of her stepfather. After years of wearing yellow Livestrong wristbands, she wanted something permanent.

A lifelong runner, Mariash got the tattoo to mark her 10-10-10 goal to run the Chicago Marathon on Oct. 10, 2010, and fund-raising efforts for Livestrong. Less than three years later, antidoping officials laid out their case against Armstrong — a lengthy account of his practice of doping and bullying. He did not contest the charges and was barred for life from competing in Olympic sports.

“It’s heartbreaking,” Mariash, of Wilson, Wyo., said of the antidoping officials’ report, released in October, and Armstrong’s subsequent confession to Oprah Winfrey. “When I look at the tattoo now, I just think of living strong, and it’s more connected to the cancer fight and optimal health than Lance.”

Mariash is among those dealing with the fallout from Armstrong’s descent. She is not alone in having Livestrong permanently emblazoned on her skin.

Now the tattoos are a complicated, internationally recognized symbol of both an epic crusade against cancer and a cyclist who stood defiant in the face of accusations for years but ultimately admitted to lying.

The Internet abounds with epidermal reminders of the power of the Armstrong and Livestrong brands: the iconic yellow bracelet permanently wrapped around a wrist; block letters stretching along a rib cage; a heart on a foot bearing the word Livestrong; a mural on a back depicting Armstrong with the years of his now-stripped seven Tour de France victories and the phrase “ride with pride.”

While history has provided numerous examples of ill-fated tattoos to commemorate lovers, sports teams, gang membership and bands that break up, the Livestrong image is a complex one, said Michael Atkinson, a sociologist at the University of Toronto who has studied tattoos.

“People often regret the pop culture tattoos, the mass commodified tattoos,” said Atkinson, who has a Guns N’ Roses tattoo as a marker of his younger days. “A lot of people can’t divorce the movement from Lance Armstrong, and the Livestrong movement is a social movement. It’s very real and visceral and embodied in narrative survivorship. But we’re still not at a place where we look at a tattoo on the body and say that it’s a meaningful thing to someone.”

Geoff Livingston, a 40-year-old marketing professional in Washington, D.C., said that since Armstrong’s confession to Winfrey, he has received taunts on Twitter and inquiries at the gym regarding the yellow Livestrong armband tattoo that curls around his right bicep.

“People see it and go, ‘Wow,’ ” he said, “But I’m not going to get rid of it, and I’m not going to stop wearing short sleeves because of it. It’s about my family, not Lance Armstrong.”

Livingston got the tattoo in 2010 to commemorate his brother-in-law, who was told he had cancer and embarked on a fund-raising campaign for the charity. If he could raise $5,000, he agreed to get a tattoo. Within four days, the goal was exceeded, and Livingston went to a tattoo parlor to get his seventh tattoo.

“It’s actually grown in emotional significance for me,” Livingston said of the tattoo. “It brought me closer to my sister. It was a big statement of support.”

For Eddie Bonds, co-owner of Rabbit Bicycle in Hill City, S.D., getting a Livestrong tattoo was also a reflection of the growth of the sport of cycling. His wife, Joey, operates a tattoo parlor in front of their store, and in 2006 she designed a yellow Livestrong band that wraps around his right calf, topped off with a series of small cyclists.

“He kept breaking the Livestrong bands,” Joey Bonds said. “So it made more sense to tattoo it on him.”

“It’s about the cancer, not Lance,” Eddie Bonds said.

That was also the case for Jeremy Nienhouse, a 37-year old in Denver, Colo., who used a Livestrong tattoo to commemorate his own triumph over testicular cancer.

Given the diagnosis in 2004, Nienhouse had three rounds of chemotherapy, which ended on March 15, 2005, the date he had tattooed on his left arm the day after his five-year anniversary of being cancer free in 2010. It reads: “3-15-05” and “LIVESTRONG” on the image of a yellow band.

Nienhouse said he had heard about Livestrong and Armstrong’s own battle with the cancer around the time he learned he had cancer, which alerted him to the fact that even though he was young and healthy, he, too, could have cancer.

“On a personal level,” Nienhouse said, “he sounds like kind of a jerk. But if he hadn’t been in the public eye, I don’t know if I would have been diagnosed when I had been.”

Nienhouse said he had no plans to have the tattoo removed.

As for Mariash, she said she read every page of the antidoping officials’ report. She soon donated her Livestrong shirts, shorts and running gear. She watched Armstrong’s confession to Winfrey and wondered if his apology was an effort to reduce his ban from the sport or a genuine appeal to those who showed their support to him and now wear a visible sign of it.

“People called me ‘Miss Livestrong,’ ” Mariash said. “It was part of my identity.”

She also said she did not plan to have her tattoo removed.

“I wanted to show it’s forever,” she said. “Cancer isn’t something that just goes away from people. I wanted to show this is permanent and keep people remembering the fight.”

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Fat Dad: Baking for Love

Fat Dad

Dawn Lerman writes about growing up with a fat dad.

My grandmother Beauty always told me that the way to a man’s heart was through his stomach, and by the look of pure delight on my dad’s face when he ate a piece of warm, homemade chocolate cake, or bit into a just-baked crispy cookie, I grew to believe this was true. I had no doubt that when the time came, and I liked a boy, that a batch of my gooey, rich, chocolatey brownies would cast him under a magic spell, and we would live happily ever.

But when Hank Thomas walked into Miss Seawall’s ninth grade algebra class on a rainy, September day and smiled at me with his amazing grin, long brown hair, big green eyes and Jimi Hendrix T-shirt, I was completely unprepared for the avalanche of emotions that invaded every fiber of my being. Shivers, a pounding heart, and heat overcame me when he asked if I knew the value of 1,000 to the 25th power. The only answer I could think of, as I fumbled over my words, was “love me, love me,” but I managed to blurt out “1E+75.” I wanted to come across as smart and aloof, but every time he looked at me, I started stuttering and sweating as my face turned bright red. No one had ever looked at me like that: as if he knew me, as if he knew how lost I was and how badly I needed to be loved.

Hank, who was a year older than me, was very popular and accomplished. Unlike other boys who were popular for their looks or athletic skills, Hank was smart and talented. He played piano and guitar, and composed the most beautiful classical and rock concertos that left both teachers and students in awe.

Unlike Hank, I had not quite come into my own yet. I was shy, had raggedy messy hair that I tied back into braids, and my clothes were far from stylish. My mother and sister had been on the road touring for the past year with the Broadway show “Annie.” My sister had been cast as a principal orphan, and I stayed home with my dad to attend high school. My dad was always busy with work and martini dinners that lasted late into the night. I spent most of my evenings at home alone baking and making care packages for my sister instead of coercing my parents to buy me the latest selection of Gloria Vanderbilt jeans — the rich colored bluejeans with the swan stitched on the back pocket that you had to lie on your bed to zip up. It was the icon of cool for the popular and pretty girls. I was neither, but Hank picked me to be his math partner anyway.

With every equation we solved, my love for Hank became more desperate. After several months of exchanging smiles, I decided to make Hank a batch of my chocolate brownies for Valentine’s Day — the brownies that my dad said were like his own personal nirvana. My dad named them “closet” brownies, because when I was a little girl and used to make them for the family, he said that as soon as he smelled them coming out of the oven, he could imagine dashing away with them into the closet and devouring the whole batch.

After debating for hours if I should make the brownies with walnuts or chips, or fill the centers with peanut butter or caramel, I got to work. I had made brownies hundreds of times before, but this time felt different. With each ingredient I carefully stirred into the bowl, my heart began beating harder. I felt like I was going to burst from excitement. Surely, after Hank tasted these, he would love me as much as I loved him. I was not just making him brownies. I was showing him who I was, and what mattered to me. After the brownies cooled, I sprinkled them with a touch of powdered sugar and wrapped them with foil and red tissue paper. The next day I placed them in Hank’s locker, with a note saying, “Call me.”

After seven excruciating days with no call, some smiles and the usual small talk in math class, I conjured up the nerve to ask Hank if he liked my brownies.

“The brownies were from you?” he asked. “They were delicious.”

Then Hank invited me to a party at his house the following weekend. Without hesitation, I responded that I would love to come. I pleaded with my friend Sarah to accompany me.

As the day grew closer, I made my grandmother Beauty’s homemade fudge — the chocolate fudge she made for Papa the night before he proposed to her. Stirring the milk, butter and sugar together eased my nerves. I had never been to a high school party before, and I didn’t know what to expect. Sarah advised me to ditch the braids as she styled my hair, used a violet eyeliner and lent me her favorite V-neck sweater and a pair of her best Gloria Vanderbilt jeans.

When we walked in the door, fudge in hand, Hank was nowhere to be found. Thinking I had made a mistake for coming and getting ready to leave, I felt a hand on my back. It was Hank’s. He hugged me and told me he was glad I finally arrived. When Hank put his arm around me, nothing else existed. With a little help from Cupid or the magic of Beauty’s recipes, I found love.

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Fat Dad’s ‘Closet’ Brownies

These brownies are more like fudge than cake and contain a fraction of the flour found in traditional brownie recipes. My father called them “closet” brownies, because when he smelled them coming out of the oven he could imagine hiding in the closet to eat the whole batch. I baked them in the ninth grade for a boy that I had a crush on, and they were more effective than Cupid’s arrow at winning his heart.

6 tablespoons unsalted butter, plus extra for greasing the pan
8 ounces bittersweet chocolate, chopped, or semisweet chocolate chips
3/4 cup brown sugar
2 eggs at room temperature, beaten
1 teaspoon vanilla extract
1/4 cup flour
1/2 cup chopped walnuts (optional)
Fresh berries or powdered sugar for garnish (optional)

1. Preheat oven to 350 degrees.

2. Grease an 8-inch square baking dish.

3. In a double boiler, melt chocolate. Then add butter, melt and stir to blend. Remove from heat and pour into a mixing bowl. Stir in sugar, eggs and vanilla and mix well.

4. Add flour. Mix well until very smooth. Add chopped walnuts if desired. Pour batter into greased baking pan.

5. Bake for 35 minutes, or until set and barely firm in the middle. Allow to cool on a rack before removing from pan. Optional: garnish with powdered sugar, or berries, or both.

Yield: 16 brownies

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Dawn Lerman is a New York-based health and nutrition consultant and founder of Magnificent Mommies, which provides school lectures, cooking classes and workshops. Her series on growing up with a fat father appears occasionally on Well.

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Doctor and Patient: Afraid to Speak Up to Medical Power

The slender, weather-beaten, elderly Polish immigrant had been diagnosed with lung cancer nearly a year earlier and was receiving chemotherapy as part of a clinical trial. I was a surgical consultant, called in to help control the fluid that kept accumulating in his lungs.

During one visit, he motioned for me to come closer. His voice was hoarse from a tumor that spread, and the constant hissing from his humidified oxygen mask meant I had to press my face nearly against his to understand his words.

“This is getting harder, doctor,” he rasped. “I’m not sure I’m up to anymore chemo.”

I was not the only doctor that he confided to. But what I quickly learned was that none of us was eager to broach the topic of stopping treatment with his primary cancer doctor.

That doctor was a rising superstar in the world of oncology, a brilliant physician-researcher who had helped discover treatments for other cancers and who had been recruited to lead our hospital’s then lackluster cancer center. Within a few months of the doctor’s arrival, the once sleepy department began offering a dazzling array of experimental drugs. Calls came in from outside doctors eager to send their patients in for treatment, and every patient who was seen was promptly enrolled in one of more than a dozen well-documented treatment protocols.

But now, no doctors felt comfortable suggesting anything but the most cutting-edge, aggressive treatments.

Even the No. 2 doctor in the cancer center, Robin to the chief’s cancer-battling Batman, was momentarily taken aback when I suggested we reconsider the patient’s chemotherapy plan. “I don’t want to tell him,” he said, eyes widening. He reeled off his chief’s vast accomplishments. “I mean, who am I to tell him what to do?”

We stood for a moment in silence before he pointed his index finger at me. “You tell him,” he said with a smile. “You tell him to consider stopping treatment.”

Memories of this conversation came flooding back last week when I read an essay on the problems posed by hierarchies within the medical profession.

For several decades, medical educators and sociologists have documented the existence of hierarchies and an intense awareness of rank among doctors. The bulk of studies have focused on medical education, a process often likened to military and religious training, with elder patriarchs imposing the hair shirt of shame on acolytes unable to incorporate a profession’s accepted values and behaviors. Aspiring doctors quickly learn whose opinions, experiences and voices count, and it is rarely their own. Ask a group of interns who’ve been on the wards for but a week, and they will quickly raise their hands up to the level of their heads to indicate their teachers’ status and importance, then lower them toward their feet to demonstrate their own.

It turns out that this keen awareness of ranking is not limited to students and interns. Other research has shown that fully trained physicians are acutely aware of a tacit professional hierarchy based on specialties, like primary care versus neurosurgery, or even on diseases different specialists might treat, like hemorrhoids and constipation versus heart attacks and certain cancers.

But while such professional preoccupation with privilege can make for interesting sociological fodder, the real issue, warns the author of a courageous essay published recently in The New England Journal of Medicine, is that such an overly developed sense of hierarchy comes at an unacceptable price: good patient care.

Dr. Ranjana Srivastava, a medical oncologist at the Monash Medical Centre in Melbourne, Australia, recalls a patient she helped to care for who died after an operation. Before the surgery, Dr. Srivastava had been hesitant to voice her concerns, assuming that the patient’s surgeon must be “unequivocally right, unassailable, or simply not worth antagonizing.” When she confesses her earlier uncertainty to the surgeon after the patient’s death, Dr. Srivastava learns that the surgeon had been just as loath to question her expertise and had assumed that her silence before the surgery meant she agreed with his plan to operate.

“Each of us was trying our best to help a patient, but we were also respecting the boundaries and hierarchy imposed by our professional culture,” Dr. Srivastava said. “The tragedy was that the patient died, when speaking up would have made all the difference.”

Compounding the problem is an increasing sense of self-doubt among many doctors. With rapid advances in treatment, there is often no single correct “answer” for a patient’s problem, and doctors, struggling to stay up-to-date in their own particular specialty niches, are more tentative about making suggestions that cross over to other doctors’ “turf.” Even as some clinicians attempt to compensate by organizing multidisciplinary meetings, inviting doctors from all specialties to discuss a patient’s therapeutic options, “there will inevitably be a hierarchy at those meetings of who is speaking,” Dr. Srivastava noted. “And it won’t always be the ones who know the most about the patient who will be taking the lead.”

It is the potentially disastrous repercussions for patients that make this overly developed awareness of rank and boundaries a critical issue in medicine. Recent efforts to raise safety standards and improve patient care have shown that teams are a critical ingredient for success. But simply organizing multidisciplinary lineups of clinicians isn’t enough. What is required are teams that recognize the importance of all voices and encourage active and open debate.

Since their patient’s death, Dr. Srivastava and the surgeon have worked together to discuss patient cases, articulate questions and describe their own uncertainties to each other and in patients’ notes. “We have tried to remain cognizant of the fact that we are susceptible to thinking about hierarchy,” Dr. Srivastava said. “We have tried to remember that sometimes, despite our best intentions, we do not speak up for our patients because we are fearful of the consequences.”

That was certainly true for my lung cancer patient. Like all the other doctors involved in his care, I hesitated to talk to the chief medical oncologist. I questioned my own credentials, my lack of expertise in this particular area of oncology and even my own clinical judgment. When the patient appeared to fare better, requiring less oxygen and joking and laughing more than I had ever seen in the past, I took his improvement to be yet another sign that my attempt to talk about holding back chemotherapy was surely some surgical folly.

But a couple of days later, the humidified oxygen mask came back on. And not long after that, the patient again asked for me to come close.

This time he said: “I’m tired. I want to stop the chemo.”

Just before he died, a little over a week later, he was off all treatment except for what might make him comfortable. He thanked me and the other doctors for our care, but really, we should have thanked him and apologized. Because he had pushed us out of our comfortable, well-delineated professional zones. He had prodded us to talk to one another. And he showed us how to work as a team in order to do, at last, what we should have done weeks earlier.

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Well: Straining to Hear and Fend Off Dementia

At a party the other night, a fund-raiser for a literary magazine, I found myself in conversation with a well-known author whose work I greatly admire. I use the term “conversation” loosely. I couldn’t hear a word he said. But worse, the effort I was making to hear was using up so much brain power that I completely forgot the titles of his books.

A senior moment? Maybe. (I’m 65.) But for me, it’s complicated by the fact that I have severe hearing loss, only somewhat eased by a hearing aid and cochlear implant.

Dr. Frank Lin, an otolaryngologist and epidemiologist at Johns Hopkins School of Medicine, describes this phenomenon as “cognitive load.” Cognitive overload is the way it feels. Essentially, the brain is so preoccupied with translating the sounds into words that it seems to have no processing power left to search through the storerooms of memory for a response.

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Katherine Bouton speaks about her own experience with hearing loss.

A transcript of this interview can be found here.

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Over the past few years, Dr. Lin has delivered unwelcome news to those of us with hearing loss. His work looks “at the interface of hearing loss, gerontology and public health,” as he writes on his Web site. The most significant issue is the relation between hearing loss and dementia.

In a 2011 paper in The Archives of Neurology, Dr. Lin and colleagues found a strong association between the two. The researchers looked at 639 subjects, ranging in age at the beginning of the study from 36 to 90 (with the majority between 60 and 80). The subjects were part of the Baltimore Longitudinal Study of Aging. None had cognitive impairment at the beginning of the study, which followed subjects for 18 years; some had hearing loss.

“Compared to individuals with normal hearing, those individuals with a mild, moderate, and severe hearing loss, respectively, had a 2-, 3- and 5-fold increased risk of developing dementia over the course of the study,” Dr. Lin wrote in an e-mail summarizing the results. The worse the hearing loss, the greater the risk of developing dementia. The correlation remained true even when age, diabetes and hypertension — other conditions associated with dementia — were ruled out.

In an interview, Dr. Lin discussed some possible explanations for the association. The first is social isolation, which may come with hearing loss, a known risk factor for dementia. Another possibility is cognitive load, and a third is some pathological process that causes both hearing loss and dementia.

In a study last month, Dr. Lin and colleagues looked at 1,984 older adults beginning in 1997-8, again using a well-established database. Their findings reinforced those of the 2011 study, but also found that those with hearing loss had a “30 to 40 percent faster rate of loss of thinking and memory abilities” over a six-year period compared with people with normal hearing. Again, the worse the hearing loss, the worse the rate of cognitive decline.

Both studies also found, somewhat surprisingly, that hearing aids were “not significantly associated with lower risk” for cognitive impairment. But self-reporting of hearing-aid use is unreliable, and Dr. Lin’s next study will focus specifically on the way hearing aids are used: for how long, how frequently, how well they have been fitted, what kind of counseling the user received, what other technologies they used to supplement hearing-aid use.

What about the notion of a common pathological process? In a recent paper in the journal Neurology, John Gallacher and colleagues at Cardiff University suggested the possibility of a genetic or environmental factor that could be causing both hearing loss and dementia — and perhaps not in that order. In a phenomenon called reverse causation, a degenerative pathology that leads to early dementia might prove to be a cause of hearing loss.

The work of John T. Cacioppo, director of the Social Neuroscience Laboratory at the University of Chicago, also offers a clue to a pathological link. His multidisciplinary studies on isolation have shown that perceived isolation, or loneliness, is “a more important predictor of a variety of adverse health outcomes than is objective social isolation.” Those with hearing loss, who may sit through a dinner party and not hear a word, frequently experience perceived isolation.

Other research, including the Framingham Heart Study, has found an association between hearing loss and another unexpected condition: cardiovascular disease. Again, the evidence suggests a common pathological cause. Dr. David R. Friedland, a professor of otolaryngology at the Medical College of Wisconsin in Milwaukee, hypothesized in a 2009 paper delivered at a conference that low-frequency loss could be an early indication that a patient has vascular problems: the inner ear is “so sensitive to blood flow” that any vascular abnormalities “could be noted earlier here than in other parts of the body.”

A common pathological cause might help explain why hearing aids do not seem to reduce the risk of dementia. But those of us with hearing loss hope that is not the case; common sense suggests that if you don’t have to work so hard to hear, you have greater cognitive power to listen and understand — and remember. And the sense of perceived isolation, another risk for dementia, is reduced.

A critical factor may be the way hearing aids are used. A user must practice to maximize their effectiveness and they may need reprogramming by an audiologist. Additional assistive technologies like looping and FM systems may also be required. And people with progressive hearing loss may need new aids every few years.

Increasingly, people buy hearing aids online or from big-box stores like Costco, making it hard for the user to follow up. In the first year I had hearing aids, I saw my audiologist initially every two weeks for reprocessing and then every three months.

In one study, Dr. Lin and his colleague Wade Chien found that only one in seven adults who could benefit from hearing aids used them. One deterrent is cost ($2,000 to $6,000 per ear), seldom covered by insurance. Another is the stigma of old age.

Hearing loss is a natural part of aging. But for most people with hearing loss, according to the National Institute on Deafness and Other Communication Disorders, the condition begins long before they get old. Almost two-thirds of men with hearing loss began to lose their hearing before age 44. My hearing loss began when I was 30.

Forty-eight million Americans suffer from some degree of hearing loss. If it can be proved in a clinical trial that hearing aids help delay or offset dementia, the benefits would be immeasurable.

“Could we do something to reduce cognitive decline and delay the onset of dementia?” he asked. “It’s hugely important, because by 2050, 1 in 30 Americans will have dementia.

“If we could delay the onset by even one year, the prevalence of dementia drops by 15 percent down the road. You’re talking about billions of dollars in health care savings.”

Should studies establish definitively that correcting hearing loss decreases the potential for early-onset dementia, we might finally overcome the stigma of hearing loss. Get your hearing tested, get it corrected, and enjoy a longer cognitively active life. Establishing the dangers of uncorrected hearing might even convince private insurers and Medicare that covering the cost of hearing aids is a small price to pay to offset the cost of dementia.

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Katherine Bouton is the author of the new book, “Shouting Won’t Help: Why I — and 50 Million Other Americans — Can’t Hear You,” from which this essay is adapted.

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This post has been revised to reflect the following correction:

Correction: February 14, 2013

An article on Tuesday about hearing loss and dementia misidentified the city in which the Medical College of Wisconsin is located. It is in Milwaukee, not in Madison.

Read More..

Well: Straining to Hear and Fend Off Dementia

At a party the other night, a fund-raiser for a literary magazine, I found myself in conversation with a well-known author whose work I greatly admire. I use the term “conversation” loosely. I couldn’t hear a word he said. But worse, the effort I was making to hear was using up so much brain power that I completely forgot the titles of his books.

A senior moment? Maybe. (I’m 65.) But for me, it’s complicated by the fact that I have severe hearing loss, only somewhat eased by a hearing aid and cochlear implant.

Dr. Frank Lin, an otolaryngologist and epidemiologist at Johns Hopkins School of Medicine, describes this phenomenon as “cognitive load.” Cognitive overload is the way it feels. Essentially, the brain is so preoccupied with translating the sounds into words that it seems to have no processing power left to search through the storerooms of memory for a response.

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Katherine Bouton speaks about her own experience with hearing loss.

A transcript of this interview can be found here.

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Over the past few years, Dr. Lin has delivered unwelcome news to those of us with hearing loss. His work looks “at the interface of hearing loss, gerontology and public health,” as he writes on his Web site. The most significant issue is the relation between hearing loss and dementia.

In a 2011 paper in The Archives of Neurology, Dr. Lin and colleagues found a strong association between the two. The researchers looked at 639 subjects, ranging in age at the beginning of the study from 36 to 90 (with the majority between 60 and 80). The subjects were part of the Baltimore Longitudinal Study of Aging. None had cognitive impairment at the beginning of the study, which followed subjects for 18 years; some had hearing loss.

“Compared to individuals with normal hearing, those individuals with a mild, moderate, and severe hearing loss, respectively, had a 2-, 3- and 5-fold increased risk of developing dementia over the course of the study,” Dr. Lin wrote in an e-mail summarizing the results. The worse the hearing loss, the greater the risk of developing dementia. The correlation remained true even when age, diabetes and hypertension — other conditions associated with dementia — were ruled out.

In an interview, Dr. Lin discussed some possible explanations for the association. The first is social isolation, which may come with hearing loss, a known risk factor for dementia. Another possibility is cognitive load, and a third is some pathological process that causes both hearing loss and dementia.

In a study last month, Dr. Lin and colleagues looked at 1,984 older adults beginning in 1997-8, again using a well-established database. Their findings reinforced those of the 2011 study, but also found that those with hearing loss had a “30 to 40 percent faster rate of loss of thinking and memory abilities” over a six-year period compared with people with normal hearing. Again, the worse the hearing loss, the worse the rate of cognitive decline.

Both studies also found, somewhat surprisingly, that hearing aids were “not significantly associated with lower risk” for cognitive impairment. But self-reporting of hearing-aid use is unreliable, and Dr. Lin’s next study will focus specifically on the way hearing aids are used: for how long, how frequently, how well they have been fitted, what kind of counseling the user received, what other technologies they used to supplement hearing-aid use.

What about the notion of a common pathological process? In a recent paper in the journal Neurology, John Gallacher and colleagues at Cardiff University suggested the possibility of a genetic or environmental factor that could be causing both hearing loss and dementia — and perhaps not in that order. In a phenomenon called reverse causation, a degenerative pathology that leads to early dementia might prove to be a cause of hearing loss.

The work of John T. Cacioppo, director of the Social Neuroscience Laboratory at the University of Chicago, also offers a clue to a pathological link. His multidisciplinary studies on isolation have shown that perceived isolation, or loneliness, is “a more important predictor of a variety of adverse health outcomes than is objective social isolation.” Those with hearing loss, who may sit through a dinner party and not hear a word, frequently experience perceived isolation.

Other research, including the Framingham Heart Study, has found an association between hearing loss and another unexpected condition: cardiovascular disease. Again, the evidence suggests a common pathological cause. Dr. David R. Friedland, a professor of otolaryngology at the Medical College of Wisconsin in Milwaukee, hypothesized in a 2009 paper delivered at a conference that low-frequency loss could be an early indication that a patient has vascular problems: the inner ear is “so sensitive to blood flow” that any vascular abnormalities “could be noted earlier here than in other parts of the body.”

A common pathological cause might help explain why hearing aids do not seem to reduce the risk of dementia. But those of us with hearing loss hope that is not the case; common sense suggests that if you don’t have to work so hard to hear, you have greater cognitive power to listen and understand — and remember. And the sense of perceived isolation, another risk for dementia, is reduced.

A critical factor may be the way hearing aids are used. A user must practice to maximize their effectiveness and they may need reprogramming by an audiologist. Additional assistive technologies like looping and FM systems may also be required. And people with progressive hearing loss may need new aids every few years.

Increasingly, people buy hearing aids online or from big-box stores like Costco, making it hard for the user to follow up. In the first year I had hearing aids, I saw my audiologist initially every two weeks for reprocessing and then every three months.

In one study, Dr. Lin and his colleague Wade Chien found that only one in seven adults who could benefit from hearing aids used them. One deterrent is cost ($2,000 to $6,000 per ear), seldom covered by insurance. Another is the stigma of old age.

Hearing loss is a natural part of aging. But for most people with hearing loss, according to the National Institute on Deafness and Other Communication Disorders, the condition begins long before they get old. Almost two-thirds of men with hearing loss began to lose their hearing before age 44. My hearing loss began when I was 30.

Forty-eight million Americans suffer from some degree of hearing loss. If it can be proved in a clinical trial that hearing aids help delay or offset dementia, the benefits would be immeasurable.

“Could we do something to reduce cognitive decline and delay the onset of dementia?” he asked. “It’s hugely important, because by 2050, 1 in 30 Americans will have dementia.

“If we could delay the onset by even one year, the prevalence of dementia drops by 15 percent down the road. You’re talking about billions of dollars in health care savings.”

Should studies establish definitively that correcting hearing loss decreases the potential for early-onset dementia, we might finally overcome the stigma of hearing loss. Get your hearing tested, get it corrected, and enjoy a longer cognitively active life. Establishing the dangers of uncorrected hearing might even convince private insurers and Medicare that covering the cost of hearing aids is a small price to pay to offset the cost of dementia.

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Katherine Bouton is the author of the new book, “Shouting Won’t Help: Why I — and 50 Million Other Americans — Can’t Hear You,” from which this essay is adapted.

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This post has been revised to reflect the following correction:

Correction: February 12, 2013

An earlier version of this article misstated the location of the Medical College of Wisconsin. It is in Milwaukee, not Madison.

Read More..

Health Testing on Mice Is Found Misleading in Some Cases

Evan McGlinn for The New York Times

Dr. H. Shaw Warren is one of the authors of a new study that questions the use of laboratory mice as models for all human diseases.

For decades, mice have been the species of choice in the study of human diseases. But now, researchers report evidence that the mouse model has been totally misleading for at least three major killers — sepsis, burns and trauma. As a result, years and billions of dollars have been wasted following false leads, they say.

The study’s findings do not mean that mice are useless models for all human diseases. But, its authors said, they do raise troubling questions about diseases like the ones in the study that involve the immune system, including cancer and heart disease.

“Our article raises at least the possibility that a parallel situation may be present,” said Dr. H. Shaw Warren, a sepsis researcher at Massachusetts General Hospital and a lead author of the new study.

The paper, published Monday in Proceedings of the National Academy of Sciences, helps explain why every one of nearly 150 drugs tested at a huge expense in patients with sepsis has failed. The drug tests all were based on studies in mice. And mice, it turns out, can have something that looks like sepsis in humans, but is very different from the condition in humans.

Medical experts not associated with the study said that the findings should change the course of research worldwide for a deadly and frustrating condition. Sepsis, a potentially deadly reaction that occurs as the body tries to fight an infection, afflicts 750,000 patients a year in the United States, kills one-fourth to one-half of them, and costs the nation $17 billion a year. It is the leading cause of death in intensive-care units.

“This is a game changer,” said Dr. Mitchell Fink, a sepsis expert at the University of California, Los Angeles, of the new study.

“It’s amazing,” said Dr. Richard Wenzel, a former chairman at the department of internal medicine at Virginia Commonwealth University and a former editor of The New England Journal of Medicine. “They are absolutely right on.”

Potentially deadly immune responses occur when a person’s immune system overreacts to what it perceives as danger signals, including toxic molecules from bacteria, viruses, fungi, or proteins released from cells damaged by trauma or burns, said Dr. Clifford S. Deutschman, who directs sepsis research at the University of Pennsylvania and was not part of the study.

The ramped-up immune system releases its own proteins in such overwhelming amounts that capillaries begin to leak. The leak becomes excessive, and serum seeps out of the tiny blood vessels. Blood pressure falls, and vital organs do not get enough blood. Despite efforts, doctors and nurses in an intensive-care unit or an emergency room may be unable to keep up with the leaks, stop the infection or halt the tissue damage. Vital organs eventually fail.

The new study, which took 10 years and involved 39 researchers from across the country, began by studying white blood cells from hundreds of patients with severe burns, trauma or sepsis to see what genes were being used by white blood cells when responding to these danger signals.

The researchers found some interesting patterns and accumulated a large, rigorously collected data set that should help move the field forward, said Ronald W. Davis, a genomics expert at Stanford University and a lead author of the new paper. Some patterns seemed to predict who would survive and who would end up in intensive care, clinging to life and, often, dying.

The group had tried to publish its findings in several papers. One objection, Dr. Davis said, was that the researchers had not shown the same gene response had happened in mice.

“They were so used to doing mouse studies that they thought that was how you validate things,” he said. “They are so ingrained in trying to cure mice that they forget we are trying to cure humans.”

“That started us thinking,” he continued. “Is it the same in the mouse or not?”

The group decided to look, expecting to find some similarities. But when the data were analyzed, there were none at all.

“We were kind of blown away,” Dr. Davis said.

The drug failures became clear. For example, often in mice, a gene would be used, while in humans, the comparable gene would be suppressed. A drug that worked in mice by disabling that gene could make the response even more deadly in humans.

Even more surprising, Dr. Warren said, was that different conditions in mice — burns, trauma, sepsis — did not fit the same pattern. Each condition used different groups of genes. In humans, though, similar genes were used in all three conditions. That means, Dr. Warren said, that if researchers can find a drug that works for one of those conditions in people, it might work for all three.

This article has been revised to reflect the following correction:

Correction: February 11, 2013

An earlier version of this article misstated the position of Dr. Richard Wenzel. He is a former chairman of the department of internal medicine at Virginia Commonwealth University. He is not currently the chairman.

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