a change of place

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(what follows here at ML will be old posts, rotated occasionally):

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By |September 7th, 2014|Blogs, from the author, journalism|Comments Off on a change of place|

Get Cancer. Lose Your Job?


Let’s start with this fact: If you are employed and get a breast cancer diagnosis, it’s less likely you’ll be working at your job four years later. A newly-published study of women in Los Angeles and Detroit found that among women less than 65 years with limited-stage breast cancer, 76 percent had a paying job at the time of their diagnosis. Based on follow-up surveys of the same women four years later, the number employed was reduced by 30 percent. That’s a huge drop.

The study was just published on-line in the Cancer Journal. The authors, including a corresponding and lead author in a department of radiation oncology at the University of Michigan, make a point in the paper’s title, Impact of Adjuvant Chemotherapy on Long-Term Employment of Survivors of Early-Stage Breast Cancer, that chemotherapy may be to blame. And there’s some truth in this. Chemotherapy causes fatigue and, occasionally lasting problems such as neuropathy, heart weakness and chemobrain that might limit or impair a person’s capacity to work effectively.

On the other hand, the likelihood of developing many of those chemo-related effects depend on the dose and regimen selected. Radiation, often, causes fatigue, and – when administered to the chest, can cause premature heart disease (atherosclerosis) and lung problems, besides secondary tumors as a late consequence of treatment. It happens, though, that hormonal treatments, like Tamoxifen, can cause chemobrain too.

As someone trained to give chemotherapy, I’ll point out that none of these options for adjuvant treatment (what’s given to patients with limited disease to lessen the likelihood of recurrence) is a walk in the park. Each bears the potential for short and long-term toxicity. So I don’t blame chemotherapy in particular, although the study authors emphasized that as a culprit based on a low-level statistical correlation.

More broadly –

This news comes as no surprise. I know too well how women at work may be treated after a breast cancer diagnosis. I am privy to the stories of dozens of women who say they were unduly turned down for promotions or good assignments, opportunities…Upon returning to work, if they took time off (which some didn’t, such as your author, during her BC treatment), they  – if they take pride in their work – find themselves missing their own doctors’ appointments, exercise and other aspects of survivorship care, just to “prove” that they’re still valuable to their office, team, business.

The harsh reality is that people who have had cancer treatment are sometimes perceived as a burden on a working group: a consultant who can’t travel quite so much, a sales rep who looks less beautiful, a nurse who has to take an occasional half-day off for a check-up. Some bosses worry, although you’d be hard-pressed to find this in writing, that an employee who had cancer treatment may suffer a recurrence, and so she can’t be counted on – no matter how capable and motivated she may be – to lead a fellowship program, or to complete an ambitious project.

What would help is for doctors to guide patients with more nuanced advice, to avoid over-treatment. And patients should ask their physicians, based on their circumstances, for the least therapy that makes sense based on the size and molecular details of their tumor, to avoid long-term toxicity. And for employers to treat their workers who have illness – and not just breast cancer – as potentially valuable workers, contributors, over the long haul.


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Palbociclib Appears to Prolong Progression Free Survival in Women with Metastatic Breast Cancer

Yesterday researchers at the annual AACR meeting announced the results of a clinical trial of a new drug with activity in some forms of breast cancer. Palbociclib (PD-0332991), a pill developed by Pfizer, was tested in women with metastatic breast cancer cells with estrogen receptors and lacking Her2. These ER+/Her2- tumors represent the most common breast cancer subtype, which is one reason so many people are eying the results of this relatively small, randomized study.

The phase 2 trial, called PALOMA-1 included 165 post-menopausal women with advanced ER+/Her2 negative disease. The research subjects were assigned to take either Letrazole (Femara, an aromatase inhibitor, a drug that inhibits estrogen synthesis) alone, or Letrazole and also the experimental drug, Palbociclib. The study found a highly significant difference in progression free survival (PFS), the intended endpoint: the mean time until disease progressed was 20.2 months among women who took Palbociclib, as opposed to 10.2 months for those assigned to Letrazole alone. The p-value for the difference between the arms (1-sided) was 0.0004. That’s a powerful  result.

But there was no statistically significant difference in overall survival between the two groups, a fact that was irksome to some observers, particularly in the biotech investment world, and to some who were reminded of the Avastin story and its fall-out. Most of the women lived for approximately 3 years after enrolling, with a trend of a few months favoring the Palbociclib arm. Another problem is that over half the patients were recruited to the study based on biomarker results, having to do with cyclin D1 amplification and/or loss of p16. So it could be the results are more relevant to breast cancer patients who have those particular changes. How those molecular features, enriched in the final study population, relate to Palbociclib’s usefulness in breast cancer and other tumor types warrants more evaluation, for sure.

My feeling is that this may prove to be a useful drug, not just in breast cancer. Any medication which interferes with cell growth by blocking cyclin-dependent kinases (enzymes) called CDK-4 and -6 could be useful in quite a few malignancies. The main side effect was suppression of the bone marrow (low blood cells). Some questions I’d like to ask the researchers, and which I hope they’ll address in the Phase III study, is if certain types of mets (e.g. lung vs. bone) or certain molecular subtypes are more tempered by this drug.

As for 10 months of PFS – if it pans out in a formal, published work, that’s valuable. Imagine that you’re 55 years old and living with metastatic breast cancer. A drug that is likely to delay, by most of 2 years, your tumor’s expansion into the lungs (causing shortness of breath), or bones (causing fractures and pain) or liver, and elsewhere can be worth a lot. It’s about the quality of life, whether or not it’s extended.

One final concern is that this study wasn’t blinded, so the doctors’ assessment of how the patients were doing, and the patients’ assessment of how they were feeling,  may have been influenced by their knowing which arm they were on. Also, because this new drug is a pill, some insurance may not cover it – a policy issue that applies to many new cancer drugs.

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JAMA Review on Mammography Points to the Need for Better Ways to Advise Women and Detect Breast Cancer

It’s hard to argue with the findings and conclusions of a new paper in JAMA put forth by Drs. Lydia Pace and Nancy Keating, both physicians with public health degrees and appointments at Harvard-affiliated hospitals. The article, published on April 2, has generated a predictable round of headlines along the lines of “Large Study Finds Little Benefit in Mammography.”

You might, while reading or hearing about this news, wonder about the value of yet another study on breast cancer screening. And you might, if you are following this blog, wonder why I remain convinced that mammography – when done right – has the potential to save many women’s lives and, what’s more, to spare even more from the physical, financial and emotional toll of prolonged treatment for advanced-stage disease.

Why I still think that breast cancer screening is a good idea for most middle-aged women (selected, from a longer list):

1. Several valid studies, most notably that from Sweden, have shown a significant survival benefit of breast cancer screening over the long term. These findings, which demonstrated a benefit to women screened in their forties, received little attention in the news.

2. Mammography is not all the same. It’s not a simple, black-and-white or numeric readout. The “result” depends a lot on the radiologist who interprets the images. Some radiologists, by their training and expertise, deliver lower false positive rates and higher true positive (malignant) “pickup” rates. To say that mammography doesn’t work, based on studies over a population, discounts the potential (and likely) benefit of having the procedure done by experts.

3. Pathology methods have improved over the past three decades. Some doctors, including epidemiologists and PCPs, may not be aware of new tools for evaluating tumors that lessen the risk of over-treating early-stage and indolent tumors.

4. Longer survival is not the only benefit of mammography. Late detection involves risks, and costs. “Screening neglect,” as some researchers call it, adds intensity to needed treatment when patients first seek care for advanced disease. This was the focus of a recent paper in the American Journal of Roentgenology that got little press except for the Cleveland Plains Dealer. The investigators in that careful but retrospective analysis found that among women in their forties, breast cancers detected in routine mammograms were significantly smaller than those detected in women who waited until they felt a lump or had symptoms. That finding was no surprise. But what mattered is that the difference in size of invasive breast cancers found – between screened and unscreened women – translated to less chemotherapy for those screened. The point: finding breast cancer early can reduce the need for toxic and costly treatment.

In reading the new JAMA paper, “A Systematic Assessment…” it seems like the authors are giving a well-prepared talk. Essentially it’s a review of reviews on mammography. Yes, it’s that “meta.” They examined the literature on mammography, going back to 1960 – but with an appropriate emphasis on more recent studies, to address 4 (huge, complex) questions: 1) what is the benefit of mammography screening, and how does it vary by patient age and risk?; 2) what are the harms of mammography screening?; 3) what is known about personalizing screening recommendations?  4) how can patients be supported to make more informed decisions about screening?

This is an ambitious set of questions, to say the least. The tables provided, which are for the most part inconclusive, draw heavily on findings that vary in the era of data collected, methods of analysis, and reasonableness of authors’ assumptions, i.e. validity.

But there is no news on mammography here, except that these two thoughtful investigators carefully reviewed the literature. There are no original data in this ambitious analysis, i.e. there is no new information about mammography’s effectiveness, the false positive rate, the harms of screening, overdiagnosis, etc.

Unfortunately the article, at a glance, may add to the growing perception among journalists, primary care physicians who may not read below the paper’s title, and others – including many ordinary women – that mammography’s effectiveness has been, again, disproved.  And so if journalists cover this “story,” as they have and will, our collective memory will incorrectly recall another negative finding, which this is not.

The authors’ main conclusions are that decision aides may be helpful, and that developing better ways of screening for breast cancer would be even better than that. I agree.

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A Film and Story-Telling Festival Focuses on Disability

Recently I had the opportunity to attend part of the New York ReelAbilities Film Festival. The 6th annual event in New York involved all five boroughs, but was based primarily at Manhattan’s Jewish Community Center. The program featured a dizzying spectrum of disability perspectives and concerns on film. It also included talks, photographs, parties and story-telling in presented by The Moth.

RealAbilities NY Disabilities Film Festival, 2014

RealAbilities NY Disabilities Film Festival, 2014

I liked everything about this festival. Perhaps the best aspect is that individuals with all kinds of issues can come, in real life, and meet other people with similar kinds of concerns. And so might their parents, or spouses and others who want to know, to gain a better sense of the experiences of people with varied physical forms. I don’t know that I could have imagined this kind of event happening, when I was a child or a young doctor.

For this post, I’ll stick to “the Moth” presentations, which numbered five. My instincts tell me not to declare favorites, so I’ll just provide a tidbit about each of the stories:

The first speaker walked onto the stage with just a bit of guidance. He was young, blind, handsome and funny. He spoke of growing up in a suburb. He was assigned chores and minded those. When in his early 20s, he signed up to participate in  a program that involved cleaning on Coney Island, the people in charge tried to keep him standing at the edge of the project, to not let him help out in a meaningful  way. He felt marginalized. By speaking with the other participants, gradually he entered the workspace. He got to get his hands dirty, doing grunt work with the rest of the crew. Happiness ensued.

Next, a dark-haired, smiling woman who has aphasia – difficulty speaking, casually stood as she told her story. Her name is Yvonne Honigburg, and she advocates for the National Aphasia Association. She described growing up with a sometimes secretive mother, of learning she was adopted, and of searching for her biological mother. Eventually the three met in a restaurant in New Haven, CT. Upon meeting Yvonne’s natural mother, the adoptive mother said something surprising. It ended well.

A woman in a wheelchair delivered the third, marvelous story. Millie Gonzalez has long curly reddish hair. She wore a sequined, shiny top and spoke of how she has always loved to dance. Evidently she has spina bifida, and after years of dancing with crutches, as a child and in high school, she’s learned to dance in a wheelchair. A while back she attended a previous ReelAbilities festival and saw the film Musical Chairs. After the event, upon trusting a man, perhaps the film director, he “twirled” her in the air, or something like that. Her heart stopped, momentarily, for the thrill of it all. It was very romantic. After that, she’s gone belly-dancing and advocating for people with disabilities.

The fourth speaker told of a moving story of her life with severe kidney disease and impaired vision. When she was a child, and the doctors finally explained to her what was wrong, she felt a sense of relief, knowing at least that there was an explanation for what she was experiencing. After some dark times, and dialysis, she received a kidney from her mother. Still, she lacked self-esteem, and hibernated. She spoke openly and vulnerably, about what led her to see the value of living. #uplifting

The final speaker walked on stage and, after a few minutes, mentioned that she had a prosthetic arm. She’d spent most of her childhood, adolescence and college years trying to hide her deformity. She didn’t want to be perceived as defective. In becoming a mother, she realized that her child had certain expectations….I cried, just a bit.

Seriously, you should listen to the Moth to find out what happened. And next year, or in your city, check out the ReelAbilities Film Festival.

No favorites. Each story is distinctly beautiful, and instructive (like people…)

All for a while,


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Why Not Tweet When You Are In the Hospital and Not Feeling Well?

A question surfaced last month is if – or why – patients should tweet, blog, or otherwise share details of their circumstances on the Internet. The discussion focused on the “case” of a friend, a thoughtful and bright woman who enthusiastically and frequently, perhaps assertively, shares her experiences as a person who lives and receives care for metastatic breast cancer. Apart from the brouhaha surrounding some vicious and factually incorrect columns by a married pair of journalists about her blog and Tweeting – the story might and I think should generate a broader discussion among journalists and doctors about patients’ privacy, social media and “openness” in the hospital setting.

This post may seem un-PC, especially at first. But my purpose is to consider the ramifications of patients using social media while getting treatment. I intend this as a conversation-starter:

From the physician’s side 

If I were a doctor making rounds now in a hospital, let’s say an oncology floor, and I knew that any of the patients might be tweeting – or could tweet – pretty much anything about his or her situation, I’d be uncomfortable about it, enough so that it might interfere with my giving the best care possible. Maybe I’d get over it, kind of the way reality TV show participants say they start to forget about being on camera all the time. But I’m not sure I’d be so honest with patients as I was, or open, as without a certain barrier, a “privacy setting,” between us (the patient and me) and the outside world.

In a (figuratively) glass hospital, I’d be more careful with my words and gestures. On the surface, that sounds like a good thing. Transparency breeds best behavior. But it’d be harder to give a patient a hug, to sneak-deliver a bunch of abandoned flowers in a vase from the utility room, to sit down in a chair at a patient’s bedside and watch the Olympics on TV for three minutes, say, while other patients (and colleagues) were waiting for me, to give a post-op patient with parched lips an ice chip, to break a minor rule. A barrier separating the patient and doctor from the world, the medical team, case managers…can strengthen the bond, and trust, between a doctor and a sick patient.

The loss of privacy can diminish the relationship. Many hospitals have rules on patients’ use of social media, and for doctors, too. But surely the future will bring new ways to break those rules. There will be greater connectedness, not less.

Now, a smart and careful patient might say to her doctors, as I do to mine: “Don’t worry, I won’t write about you on the Internet.” And I don’t, except occasionally and vaguely. Generous words, a genuinely positive “review” might cause trouble down the road. Because if something goes wrong later, and the doctor feels exposed… Stuff happens, and you may not be able to control it.

Why this matters is that if doctors don’t trust the patients they’re giving care to, the care won’t be as kind, or “good” in the sense of quality. To practice well, most doctors need to know, to be confident, that their patients will be careful and cautious about sharing information. In recent decades, doctors’ trust in their patients has eroded, not just from threats of malpractice, but by the plain fact that patients shift from doctor to doctor based on insurance and other changes, and, increasingly, receive care from medical teams and what some call patients’ “homes.”

From the patient’s side –

Being isolated in a hospital room leaves you vulnerable to doctors and other caregivers who may be inappropriate, rude and even abusive. This is especially true if you’re in pain, unable to walk or can’t speak. You might consider that having the capacity to call for help – to Tweet – is empowering.  Health care #911, and very public!

But the main benefit, as I see it, is that patients with similar conditions can find one another and provide support, one to each other. When I was in the hospital for scoliosis surgery as a teenager, for instance, I think I would have benefited from connections to other kids going through the same. When I had my breast cancer treatment, maybe I would have found comfort in the support of – and being “with,” while in the hospital – knowing other women who were going through it, too.

Being sick and alone is scary. Having instant contact to the outside world can be a lifeline.

Split decision?  #nojudgement

Ideas welcome!

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Shirley Temple Made It Easier to Talk About Having Breast Cancer

If a former film star held a press conference today about having breast cancer, she would hardly make history by doing so. Unless she were exceptionally young or famous for her gorgeous body, a celebrity’s cancer announcement might receive less attention, in itself, than scrutiny over her treatment decisions. Parade lists dozens of famous individuals who have “come out” with a breast cancer diagnosis.

Shirley Temple in 1944 (Wikimedia image)

Shirley Temple in 1944 (Wikimedia image)

Yesterday, Shirley Temple Black died at the age of 85 years. In the fall of 1972, the former actress had a mastectomy to remove a tumor from her left breast. She was 44 years old. Within days after surgery at Stanford Hospital in San Francisco, she spoke to the media about her condition. She advised other women not to be afraid to see a doctor if they noticed a breast lump. Newspapers around the country reported on her surgery, and advice. “There is almost certain recovery from this form of cancer if it is caught early enough,” she said. Her intention was to encourage other women to not be afraid of seeking care for breast cancer.

In that era, her message was one of empowerment. In the early 1970s, many women were terrified of having a malignancy. If they felt a breast lump, they might wait months or years, until it grew through to the skin, eroding it, or spread to other body parts, eventually causing pain or death. The message of early detection, which some experts now question, was considered an imperative by almost all authorities – surgeons, medical oncologists and public health experts.

I must admit, I’ve never been a fan of Shirley Temple’s “baby burlesk” style of cuteness, curls and twirls. I acknowledge what historians say, that as a girl she delivered smiles and good cheer when she appeared in Depression-era films. Some of her most famous scenes, like singing “On the Good Ship Lollipop” in Bright Eyes, or dancing with Mr. Bojangles (Bill Robinson) in The Little Colonel, do bear a certain charm, or interest, through time.

Shirley Jane Temple was born on April 23, 1928. She retired from acting at 22 years, around the time she married Charles Alden Black. In the 1950s she entered the political realm, raising money for the Republican Party. In the 1960s, she conveyed support for the war in Vietnam. While Nixon was President, she served as a delegate to the United Nations and ambassador to Ghana. She held positions in the administration of Gerald Ford and, later, under George H. W. Bush as ambassador to Czechoslovakia. She was, most certainly, a woman with whom I might have had some serious disagreements at a dinner table.

What I choose to remember about Shirley Temple is that she lived for 41 years after having a mastectomy for breast cancer in 1972. She spoke openly about her medical condition, and encouraged other women to seek medical care if they noticed a lump. In doing so, she may have saved more than a few lives. And she made it easier for us, today, to talk about breast cancer, options, and long-term effects of treatment.

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Can You Trust a Selfie?

Lately I’ve been thinking a lot about the value of patients’ voices. As a doctor, I was trained to be somewhat skeptical of what people say, or admit, about their conditions. I was told, though never inclined, to steer the conversation, the history-taking part of the exam, to get the patient’s story in a way that fit succinctly, to answer the questions I was required to ask. The goal of the interview was to form a reasoned opinion about what might be ailing the person, i.e. a diagnosis – and, later, to establish a plan to help make the person feel better.

Journalists, whether they’ll say so or not, tend to do the same. They write an article with a purpose, on assignment or otherwise. And they’ll interview people with the goal of getting pithy quotes to make a point. And they’ll take the words other people and chop ‘em up, and present those to relate a certain narrative. Here too, I’m guilty.

But my point here, today, is about truth, and where the most credible information can be found. Can you trust a selfie?

When I glanced through yesterday’s paper on-line, I read a wrenching account of child abuse. The story, presented in the form of a letter, came through Nick Kristof, a reliable source in my view. I value his columns on environmental and women’s health. When I read the letter he presented, by Dylan Farrow, detailing the humiliating experiences she had as a young child in the home of her adopted mother, Mia Farrow, and the filmmaker Woody Allen, I was stopped by revulsion. Her depiction of an incident had the immediate effect of making me never wish to see another of Allen’s films again. Later on, I read Kristof’s regular NYT column, which includes just a clipped segment of the letter. The picture clouded. He makes a point with which I agree, fully – that girls and women who claim to have been assaulted, or abused, should be taken seriously. But I found myself wondering: how do we know what Dylan says is true?

I’m struck by how two versions of the same story, offered by one journalist, led me along diverging sympathies. One, in which the young woman’s testimony is included fully, left me feeling convinced that the filmmaker, who’s created many of my favorites, shouldn’t receive awards and, in fact, deserves punishment. The other, in which the journalist presents parts of her letter in the context of his admitting a relationship with the family and some legal issues around the case, left me wondering if the celebrity is a victim of finger-pointing or distorted recollections of things that happened to a child a long time ago.

The bottom line is that I certainly can’t know what happened, nor can most readers. Memory of pain, illness, trauma and ordinary experience is subjective.

Getting back to medicine –

Few journalists I know would want a doctor to not listen attentively to their account of their illness, however long. Many doctors claim they’re giving patient-centered care, but are they really listening to their patients’ stories? How do professionals count, or discount, an individual’s rendition of a story, and render a diagnosis or prescription?

My only conclusion is that it’s usually worth hearing what a person says, directly. She is a key witness to her experience. Doctors and journalists may aspire to being more objective, by documenting what happened to a person or group. They draw their own pictures, or graphs, and offer separate explanations of events and phenomena. But they make edits all the time, consciously and otherwise.

All for this week.

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Learning About Lou Gehrig, his Diagnosis, Disability and Pride

I can’t resist mentioning that today I caught part of another old baseball flick in the gym. Pride of the Yankees, on TCM, features Gary Cooper as Lou Gehrig. Sam Wood directed this 1942 MGM classic in which Babe Ruth appears, briefly in cameo, as Babe Ruth. A Times reviewer, writing after its July 1942 release, complained that the film didn’t include enough baseball, nor sufficient drama until its end. That may be true. But your athletically-challenged author was moved by this film, and stopped by some of the scenes depicting how information was conveyed in that era, about the star’s declining health.

movie poster

movie poster, 1942 film “Pride of the Yankees”

I learned about Lou Gehrig in medical school. Amyotrophic Lateral Sclerosis (ALS, aka Lou Gehrig’s Disease) is a progressive and serious neurological disease that tends to affect a person’s voluntary (“motor”) muscles, such as those of the arms, legs and face. The CDC maintains a national registry for the condition, which is of unknown cause and, to the best of my knowledge today, remains on the shortening list of incurable conditions. The NIH estimates that 20-30,000 people are living with ALS, and that some 5,000 or so are found to have this condition each year in the United States. It typically affects, or “strikes” – as it’s almost universally metaphored, people in their forties or fifties.

(Forgive me the verb, this post is both serious and personal.)

A former colleague, whom I admire and will always remember for what he has taught me about immunology and even more by his working through illness, has ALS and has continued contributing for the long time, over 20 years, that I have known him. What enables some people with illness, i.e. patients, to keep contributing in their field of expertise is, first, their wanting to keep working. But it also requires a sensitive and encouraging environment – a workplace that allows people with knowledge, who become disabled or limited by health concerns, to work as best they can.

I learned that Lou Gehrig was a New Yorker. He was born to German immigrants in Yorkville, near where I live in Manhattan. According to his biography in the Baseball Hall of Fame, the left-hander was born in June 19, 1903 and died on June 2, 1941, a few weeks shy of what would have been his 38th birthday. He was called the Iron Horse and played first base for the Yankees. In the movie, it takes Gehrig a while to realize, or admit, that he can’t play baseball – that he’s stumbling and struggling to even hold a bat, or run or walk. Once the athlete acknowledges his limitations, he is treated kindly and generously by his manager, teammates and fans. At first, the doctor in the Scripps Clinic doesn’t want to tell him the truth about his condition. But Gehrig wants the numbers, the statistics, facts. Finally, after Cooper, playing Gehrig, asks him if it’s “three strikes.” The doctor answers that, yes it is. The patient understands his meaning. No one in the room can pronounce the words “amyotrophic lateral sclerosis,” but Gehrig gets the picture. The patient doesn’t want to tell his wife but, as these things usually go, she figures it out.

The Yankees and Gehrig’s manager try to keep his illness a secret, but after he gives up his spot on the roster, it becomes progressively evident that something is seriously wrong. One nugget in the film is an interaction with what might be considered a peer patient. Early on, Gehrig encounters a boy who can’t walk, and offers him encouragement. Later, once Gehrig’s condition has become evident, the young man comes to tell him thanks, and to show Gehrig he’s gotten better, by not giving up. But the boy becomes tearful and appears not to enter the stadium. It seems his hero’s deteriorating condition is too much to watch.

On July 4, 1939, Gehrig gave a speech before a packed Yankee stadium. He thanked his teammates, coach, sportscasters, athletes of other teams, fans, his parents and his wife, and concluded, famously, that he was “the luckiest man on the face of the Earth.”

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Reading Lisa

image, and link, to Lisa's blog

flower image, from Lisa Bonchek Adams

For this week, I refer my readers to the generous, telling blog of Lisa Bonchek Adams, a woman who is 44 years old and lives with Stage 4 breast cancer. She has spent the past week holding firm at the center of a media-storm, while hospitalized. 

I know Lisa and admire her for her candor. It takes courage to share what it’s like, as she does – good days and bad. Yes, her story is imperfect. But so is everyone’s.

I see beauty in her story, unedited.

Lisa’s blog and tweets are not filtered by a journalist, nor structured by a doctor to fit into an HPI or EHR. She writes directly to her readers. If you insist on literature, you might consider Lisa’s work as a splintered and intensely personal longform narrative.

The blog is kind of like a thick, old-style paper chart of a complex patient. A doctor, in trying to understand a person’s course, might read all of it, or flip through most, or just cut to the chase and scan a few recent lines and lab values. It takes time to pour through a detailed account, to appreciate what is really going on, to understand what the notes reflect.

It could be that there is no “answer,” that Lisa’s story is, plainly, what it is – about her life. Not everything needs be explained. Why peg a person’s condition? Except maybe if you’re a doctor and she’s asking you for treatment or advice. 

Lisa is not asking for a diagnosis. She has a team of doctors. She is just letting you know what it’s like to be in her circumstances, in case you’re interested, or care.

I learn a lot from Lisa. I am glad that she is alive and tweeting, as she chooses.

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