Medical Lessons

Web Name: Medical Lessons






Recently I saw Inside Llewyn Davis, the new Coen brothers’ film about a folksinger in Greenwich Village. The moving, fictional story takes place in the early 1960s. The protagonist, handsomely portrayed by Oscar Isaac, can’t quite make it as a musician. He roams from one friend’s apartment to another, never quite sure where he’ll go next. There’s a lot you might explore, intellectually, about his journey, a cat named Ulysses and a trip to a Chicago club called the Gate of Horn.I liked this sad movie, a lot.What I nearly missed, though, was the significance of one of the songs, “The Death of Queen Jane.” Fortunately an obstetrician-gynecologist and neighbor, Dr. Peggy Polaneczky, reminded me by her post on its relevance to women’s health. The English ballad tells of Jane Seymour, a wife of Henry VIII. She died in October 1537, at less than 30 years of age, days after delivering a male heir. Queen Jane s labor was prolonged, her death attributed to complications of childbirth.The actress Carey Mulligan, Inside Llewin DavisFast-forward 475 years and a bit more In 2012, the WHO reported that approximately 800 women die each day from preventable causes related to pregnancy. That figure translates to over 300,000 unnecessary deaths each year, worldwide. Pregnancy-related deaths declined sharply in the United States and most of the world in the 20th Century. The CDC indicates that U.S. maternal death rates have been on the up since 1987. The reasons for this trend are not established. That some are having children at an older age may be a factor. But most pregnancy-related deaths in occur in young women. The problem is particularly grave among African Americans. Likely contributing risks, from 1987 to 2009, include lacking of access to health care, and having chronic medical conditions like diabetes, hypertension and obesity.Shifting notes The music Inside Llewyn Davis is lovely, haunting. Seeking details on the traditional English folksong, “The Death of Queen Jane,” led me through a different sort of journey. Here’s a link to some information on it from the Mainly Norfolk English Folk and Other Good Music Project. On YouTube you can find versions performed by Joan Baez, among others. Wouldn t you know it, the music of her sometimes lover, Bob Dylan, plays toward the closing of the Coen brothers’ film? Dylan has a song, “Queen Jane Approximately,” that was picked up by the Grateful Dead. The consensus on Wikipedia, though, would suggest that Dylan s lyrics have nothing to do with the Tudor Queen. At that point I stopped searching for answers about Jane Seymour’s cut life, whether she was in labor for two or nine days, and the meaning of the song. And I ll close with this sound clip of “The Death of Queen Jane” from Inside Llewyn Davis, performed by Oscar Isaac. You can catch a fragment of the desperate woman’s plea.Related Posts:The Iron Lady, a Film About an Aging WomanGet Cancer. Lose Your Job?JAMA Review on Mammography Points to the Need for Better Ways to Advise Women and Detect Breast CancerA Film and Story-Telling Festival Focuses on Disability The Dallas Buyers Club Takes on AIDS, Peer Patients, and Not Taking No for An Answer If you’re a doctor or nurse of a certain age, the Dallas Buyers Club will jog memories. If you’re among those who lost a loved one or friend to AIDS maybe 20 or 30 years ago, or not, this new film might wrench your heart. Anyone watching will be pushed to think hard about drug development today, the slow pace of progress for metastatic breast cancer and other young life-takers, and the FDA’s role in sanctioning, or blocking, treatments for adults with terminal illness.scene from the Dallas Buyers Club (Focus Films)The movie draws loosely on the story of Ron Woodroof, a Texan rodeo rider who developed AIDS around 1985. A rail-thin Matthew McConaughey, who says he dropped nearly 50 pounds for this role, somehow nails the look of young, HIV-infected men who were filing into hospitals and clinics back then. After absorbing his diagnosis and said prognosis of 30 days to live, the cowboy teams up with Rayon, a (fictitious) transgender woman portrayed, memorably, by Jared Ledo. Together with an oddball group of sympathetic accomplices, the pair set up shop, to procure and distribute unapproved medications the doctors won’t prescribe. Jennifer Garner plays a sympathetic young physician, Dr. Eva Saks, who in the movie crosses lines a bit incredibly, too personally in the second half, to help the AIDS patients and commiserate. But otherwise the film is spot-on. It captures the desperation, determination and clinging together of people, then, affected by what was incurable disease.One question that sticks with me, as a physician reflecting on the story, is how unclear it is which drugs, exactly, helped the protagonist. Woodroof, as depicted in the film, briefly takes AZT and then moves on to all kinds of substances including DDC (Zalcitabine) from Mexico, interferon of unknown purity or dose from Japan, protein supplements and more. Through a mix of stuff he lives until 1992, seven years beyond what the doctors first told him to expect. An old-school clinical trialist, almost any of my former teachers, and anyone who appreciates evidence-based medicine (as I do, for the record) would know and state and insist that you can’t draw any conclusions based on what happened to the movie’s protagonist, or Woodroof in real life.On the other hand, clinical trials are painfully slow. Published trials can be flawed. Even if they re randomized and well-analyzed, the findings can be hard to interpret when it comes to a single patient’s course and well-being. What’s a dying man to do?Another relevant point, for people affected by almost any health problem, is the extent to which the patients took charge in the Dallas Buyers Club. They found and shared information about their disease independently of their physicians. The image of an AIDS patient using an old computer in a library, looking up articles about his condition, anticipates patient networks of which there are hundreds, on-line and in communities, today.I came away from this movie feeling optimistic. Because when I was a student, 30 years ago, I wouldn’t have believed that a man afflicted by AIDS, as McConaughey portrays, could now, likely, live for a long time.#hope, and happy Thanksgiving,ESRelated Posts:Visiting an Exhibit on Early AIDS at the New York Historical SocietyPalbociclib Appears to Prolong Progression Free Survival in Women with Metastatic Breast CancerCan Anyone Be a Patient Advocate?Magic Johnson is Alive 20 Years after Announcing He Had HIVLooking Back on The Normal Heart, and Patients Activisim Before I became a journalist, I rarely talked about my medical problems. When I was working at the hospital I tried not to mention, or show, the pain I was experiencing in my back to colleagues or even friends. Eventually I had to tell a higher-up about it, because I didn’t take narcotics and the pain became limiting. Rounding was difficult. I needed a chair.And so I was struck by an essay in today’s Times by a woman who has dystonia, a neurological condition. She writes:Long after “coming out” to my friends about my diagnosis, I realize now that what’s most important is telling people about the disease. Telling waiters why I’ve brought a special pillow with me to a restaurant; legislative aides who want to know what their bosses can do; and strangers who ask, almost rhetorically, if I am in pain.The point of the article, as I understand it, is that big-name diseases like cancer get loads of media attention and sympathy from strangers. Relatively few people “get” the suffering of those with rare or less mortifying conditions. This is especially true when there’s no celebrity who speaks, writes, sings or otherwise whines or rails on it. People who don’t feel well want empathy, or at least a bit of consideration.OK, now I’m going to say what’s hard, and I might regret, but I’m not sure that everyone needs to hear about all of our ailments: Sure, if you’re a writer, you can sort through your medical issues and feel better by expressing yourself, as I sometimes do here, and in principle and occasional reality help others facing similar disorders. And if you’re an employee somewhere and you need to take time off or accommodation for a disability, you may need to talk with your boss about what’s going on.But do you need explain to the person on the checkout line or, say, a mother organizing a bake sale, why your back hurts? Why you frequent the women s room? Or why you need a seat on the bus?I am truly ambivalent about this.My only way out is to tell you of an error I think I made, in withholding information. After my spine surgery, when I couldn’t sit up without assistance, or raise my arm to brush my teeth, and then eventually was practicing walking with a cane, wearing a brace in warm weather under modest clothing, I deliberately didn’t visit or walk by my place of work. I didn’t want my colleagues to see me looking frail. I wanted to return to work looking strong and standing straight up, as if nothing were wrong inside.Already I’d had the cancer treatment – surgery and chemo – and they knew about that, although we didn’t speak of it much. Mainly it was women coworkers who visited me when I was hospitalized. That is understandable. Most of my colleagues didn’t know about my back. Not really. A lot of people have back pain, after all. What’s the difference, scoliosis, fusion, a revision, a clot, whatever…Or about my other conditions. It was TMI.Over time I was becoming a burden to the group and – astonishingly in retrospect, I felt badly about that. I worked harder than most, to compensate for my disability (which I had trouble acknowledging, internally), and that further damaged my health. I sometimes wonder, now, if I had told my colleagues earlier, and let my non-cancerous conditions “show,” would I still be practicing medicine today?Maybe.Not everyone wants to hear about it. Or know. Besides, plenty of people have stuff they don t mention “Everything is copy,” is a phrase Nora Ephron learned from her mother. That s according to her son, Jacob Bernstein, who  detailed some of her final days in the New York Times Magazine. But Ephron kept quite a bit to herself. She was a sharp and successful lady.Thoughts?Related Posts:I Feel Your Pain (not)On PreciousContemplating Empathy, Early This Morning After the EarthquakeAn Ordinary DayWhy Medical Lessons? I hope this post will be the start of a long conversation on breast cancer survivorship. The question is, what s the right, PC and emotionally-sound, sensitive but not sappy term to describe the situation of a person who s living after breast cancer?Some might say, who cares if you ve had it?Once, about six years ago, a colleague – an oncologist in my community I met on the street stopped and asked me how I d been. I said, well, I d been out for a while because of some health problems. I mentioned that I had breast cancer among other things. Who doesn t have breast cancer? she quipped, and then we talked about medical offices.So what? was her point.Sure, everyone s got stuff by the time they approach their 50th birthday. Life would be pretty boring if we didn t. And my personal history happens to include BC.OK, NBD.Why it matters, at least in my situation, is that I m writing about health issues including breast cancer. So I think it would be deceptive to not mention this loaded credential. In a few weeks I ll be teaching med students again, and although I don t think that episode of my life is central to my capability as a teaching physician, I do think (and hope) it makes a difference.Thinking more generally:A lot of women, me included, have major physical changes upon undergoing treatment for BC. My hair was curly for most of a year. My breasts are gone. My bones are thinner and I m estrogen-deprived. Sound depressing? It is, for as many as 30 to 40 percent of women at some point after their diagnosis. It s not a minor experience in the physical, emotional or life-changing sense.TV aside, the problem with the survivor term is that, maybe, it implies some sort of heroism or strength. But as an oncologist who happens to have had good insurance, knowledge and friends in the field, I just see it as, largely, the luck of the draw: there s no reason for me to survive while another woman struggles and succumbs to metastatic disease.I can t deny to my readers, family, friends and others that I ve had breast cancer, because it does affect my writing, feelings, capabilities and outlook. But I wish there were a better term for my status.Any ideas?Related Posts:Another Take On An Ordinary DayA Note on the Komen FiascoConfusing Reports On Coffee and Cancer, and What To Do About BreakfastWhy I Went for My Screening MammogramMind over Matter? Don’t Kid Yourself (on Stress and BC) One of the ways that I gained the trust of the family is that I gave them information. (R. Skloot, a journalist, speaking about her interactions with Henrietta Lacks family, Columbia University, Feb 2, 2010)This week I had the opportunity to hear a terrific talk by Rebecca Skloot, author of a new, flying-off-the-shelves book –The Immortal Life of Henrietta Lacks.Mrs. Henrietta Lacks died of metastatic cervical cancer in the colored ward at Johns Hopkins Hospital in Baltimore, MD in September 1951. She lived no more than 31 years and left behind a husband, five children and an infinite supply of self-replicating cancer cells for research scientists to study in years to come.HeLa cells with fluorescent nuclear stain (Wikimedia Commons)Like many doctors, I first encountered HeLa cells in a research laboratory. Investigators use these famous cells to study how cancer cells grow, divide and respond to treatments. I learned about Mrs. Lacks, patient and mother, just the other day.Skloot chronicles her short life in fascinating detail. She contrasts the long-lasting fate and productivity of her cells with that of the woman who bore them. She connects those, and her human descendants unfortunate financial disposition, to current controversies in bioethics.In the years following their mother s death, scientists repeatedly approached her husband and asked her young children for blood samples to check the genetic material, to see if their DNA matched that of cell batches, or clones, growing in research labs.The issue is this: her husband had but a third-grade education. The children didn t know what is a cell, HLA-testing or clone. The family had essentially no idea what the doctors who d taken, manipulated and cloned their mothers cells were talking about, Skloot recounts. They thought the doctors were testing them for cancer.Years later, when they learned that their mother s cells were bought, sold and used at research institutions throughout the world, they became angry and distrustful. The problem was essentially one of poor communication, she considered. Even a basic education in science would have helped, Skloot said. Patients, they want to be asked, and they want to be told what s going on. Well said!Related Posts:How to Avoid Death in the ICUHow Well Do You Really Want to Know the “Red Devil?”A Routine VisitTen Ways to Better Our Health (Magazine Cover Style)9 + 1 Ways to Reduce Health Care Costs I will post here only occasionally.Thank you for your readership, comments and support,ESRelated Posts:No Related Posts

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