Help With A Critical Endeavor: Providing Meaningful Comfort to the Sick and Dying

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Image courtesy of flickr.com

I have been fortunate to connect with Abigail Johnston, a dynamic woman who has selected a title for her blog that’s a perfect description of her and her mission: “No Half Measures: Living Out Loud With Metastatic Breast Cancer.”

Faced with a daunting diagnosis that could crush many of us, Abigail has instead seized the time she has to become a patient advocate and educator. While she’s unsparing in her descriptions of her own and others’ ordeals–often worsened by bureaucratic entanglements and seemingly uncaring (possibly burned-out) professionals–her posts are marked by humor, a sense of the absurd, compassion, and practical suggestions. They are life-affirming.

I am pasting her most recent post, “Ring Theory,” below because its approach to communicating with seriously ill people–and their loved ones–provides information that I think we all need. And, when we eventually find ourselves in the center of the ring, I believe we will all hope that those around us are similarly well-informed.

Ring Theory

[From the blog No Half Measures: Living Out Loud With Metastatic Breast Cancer, by Abigail Johnston.]

I ran across this theory early on in my experience with Stage IV Metastatic Breast Cancer and it really resonated with me. The longer I’ve lived with the disease, the more it resonates with me. While I’m horrible at asking for help and often overestimate what I can handle, the kindness of some family and friends has driven home how important this idea really is.

Actually it’s probably more the actions of some family and friends who have not shown kindness that has really driven home how important this concept is to those of us who are dealing with a health crisis.

I’ve included a link below to the full explanation of the theory, but here are the basic tenets, paraphrased from Silk and Goodman:

1. Draw a circle. In this circle, write the name of the person at the center of the Health crisis.
2. Now draw a larger circle around the first one. In this ring, put the name of the person next closest to the crisis.
3. In each larger ring, put the next closest people. As Silk and Goodman state, “Parents and children before more distant relatives. Intimate friends in smaller rings, less intimate friends in larger ones. . . When you are done, you have a Kvetching Order.

A pictorial representation may help:

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The basic idea is that the person in the middle does not receive the venting/kvetching from outer circles, especially when said venting is about the person in need of help.

For example, if you are a family member of a terminally ill patient who spends the night in the hospital with your dying family member, you don’t then get to complain to that dying family member about how that night away from your family was stressful for you or how others in the family did or didn’t communicate nicely when arranging for someone to spend the night.

Why?

This theory takes into consideration that the person who is dying is carrying a much heavier psychological load than anyone else and that close family is affected more than distant relatives or acquaintances.

In essence, this theory is how to demonstrate love in a clear and understandable way. Violating this idea creates more and more angst and damage to the person who is already carrying more than a healthy person ever could understand.

Why would someone who loves a dying person want to cause further damage?

Here’s an article that lays out the ring theory in much more detail for anyone who is interested in learning more.

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I hope after you’ve read Abigail’s post, You’ll also read the Psychology Today article about the Ring Theory to which she links, and the original LA Times Op-Ed by the authors, Silk and Goodman. The Psychology Today article includes some practical suggestions that are extremely helpful.

Please don’t let yourselves be put off by the rough-hewn drawing; this material is more than worth the few minutes it will take you to read through it all.

Annie

 

 

 

Don’t You Think the World Could Use a Little Anger Management? Here’s a Way That Just May Help…

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Singer T & Klimecki, OM Image courtesy of commons wikimedia.org

Well, sure: the holiday season is, ironically, a time of stress. But we know there are high levels of anxiety that have preceded this supposedly joyous time and will surely follow us into the New Year/decade. 

I don’t have to itemize the list: it’s as close as your newspaper or electronic device. All sorts of problems and calamities—natural and manmade—have been occurring just about everywhere.

We can’t change the world, but we do have some control over how we view the world and our place in it. And if enough of us exercise that control, we can make a difference.

How Can We Do That?

By learning from the fortunate fusion of Buddhist practice—validated and adapted by Western scientists. Science writer Daniel Goleman, who was interviewed in an article titled “Can Compassion Change the World?,”  collaborated with the Dalai Lama on a book called A Force for Good: The Dalai Lama’s Vision for Our World.

Long a collaborator with scientists, the Dalai Lama set forth his views on how to improve the world with the help of science. When the interviewer asked Goleman why compassion is so important, he said the Dalai Lama wasn’t speaking from “a Buddhist perspective; he’s actually speaking from a scientific perspective. He’s using scientific evidence…which shows that people have the ability to cultivate compassion.” [emphases mine throughout]

Goleman observed:

“This research is very encouraging, because scientists are not only using brain imagery to identify the specific brain circuitry that controls compassion, but also showing that the circuitry becomes strengthened, and people become more altruistic and willing to help out other people, if they learn to cultivate compassion—for example, by doing traditional meditation practices of lovingkindness. This is so encouraging, because it’s a fundamental imperative that we need compassion as our moral rudder.”

Goleman speaks of “muscular compassion,” and he explained that the term is necessary to demonstrate that

“compassion is not just some Sunday school niceness; it’s important for taking social issues—things like corruption and collusion in business and government, and throughout the public sphere…for looking at economics, to see if there is a way to make it more caring and not just about greed, or to create economic policies that decrease the gap between the rich and the poor. These are moral issues that require compassion.”

The Buddhist term for practicing compassion is Metta—and mindfulness meditators call it lovingkindness meditation. Sometimes lovingkindness appears as one word; sometimes two; sometimes it’s hyphenated. In the scientific literature, it’s abbreviated as LKM. My personal preference is lovingkindness, so for consistency, that’s what I’m using throughout this post.

A Quick Look at Mindfulness

Mindfulness meditation per se, scientific studies have found, regulates attention to create a calm mind, and varied areas of the brain have been identified as showing changes (including increases in gray matter) among those who are regular practitioners—experts—as compared to novices. 

Jon Kabat-Zinn, who coined the term mindfulness and developed an eight-week course on Mindfulness-based Stress Reduction that is widely used, defines it as “paying attention in a particular way: on purpose, in the present moment, and nonjudgmentally.”

Practitioners, of whom I’m one, use a focus on the breath to calm the mind. Sometimes people get discouraged meditating and give up too soon because their minds wander, but expert meditators will tell you that every time the mind wanders, you’re becoming aware that it’s happening, and that’s a good thing. You simply return to breathing in and out.

There are many techniques to help you stay on track. That’s a quick look at a complex process that has been scientifically validated to reap benefits as you explore your internal self–mind and body–and your place in the world.

And Now, Lovingkindness…

Lovingkindness is an associated practice to mindfulness. Specific studies have also shown that practicing lovingkindness reduces stress, helps those in the helping professions prevent burnout, aids veterans with PTSD, and possibly even extends life.

One study found that the telomeres—the ends of the chromosomes that prevent deterioration and whose length is associated with longevity—were longer in women who routinely practiced lovingkindness than in those who didn’t.

The Goleman article led me to the work of Tania Singer, formerly the director of the Max Planck Institute for Human Cognitive and Brain Science in Germany. (There’s an irony here that I’ll detail shortly.) Her professional life has been devoted to studying empathy and compassion.  

I learned from her that the empathy I’ve always valued isn’t always such a good thing. Empathy, the ability to feel another’s pain, is clearly important for interacting with other humans.

But it can have a stressful side—empathic distress—that leads to potential burnout and a lessened desire/ability to help. The high rates of physician burnout and suicides are examples. 

Compassion, on the other hand, doesn’t involve sharing another’s suffering, Singer has observed.

“Rather, it is characterized by feelings of warmth, concern and care for the other, as well as a strong motivation to improve the other’s wellbeing. Compassion is feeling for and not feeling with the other.”

In fact, Singer and her group have found that the apparently similar traits of empathy and compassion involve different, and not overlapping, structures in the brain.

What’s more, because of the brain’s neuroplasticity (ability to change based on training), compassion training can lead to positive results.

As they’ve written:

“Compassion may, therefore, represent a very potent strategy for preventing burnout. In light of high prevalence rates of burnout and stress-related diseases in Western societies, we anticipate that the present findings will inform other intervention studies on the plasticity of adaptive social emotions….[and] hopefully help to design new training programs aimed at increasing resilience and coping strategies in many domains, including health care, educational settings, and high stress environments in general.”

I watched two videos of Singer, a prominent neuroscientist. describing her work, which includes programs with economists to try to draw up models that more closely adhere to the compassion that Goleman described. She was a compelling and delightful speaker. 

However, In 2018, this woman whose life’s work has focused on empathy and compassion resigned as director of the Max Planck Institute after eight colleagues accused her of bullying them and some said she’d reduced them to tears.

Alas! She practiceth not what she preacheth! Hard to fathom, but her poor behavior doesn’t detract from the validity of her research findings.

And it certainly doesn’t seem indicative of what I’ve heard and read about leaders in the field of lovingkindness.

I consider Sharon Salzburg, one of the most respected and beloved teachers and authors on the topic, a personal guru on the journey into lovingkindness that I’ve been taking for a couple of years now.

I believe she’s a reliable guide into how the practice can help us all, physically and mentally, improve our relationships—and even help us enrich the lives of strangers.

Want to Try It?

Though Singer’s neuroscientific experiments took practitioners nine months, it doesn’t take that long to get the hang of it. For those who’d like to try it, here’s what you do.

Briefly, lovingkindness consists of repeating some simple phrases, silently, expressing good wishes. You can say whatever you choose, but Salzburg suggests some variation of  “May you be happy, may you be healthy, may you live with ease.” 

Because so many of us are our most severe critics, traditionally, we begin by offering these unconditional good wishes to ourselves: “May I be happy, healthy, live with ease.”

We then draw an ever widening circle, extending these sentiments to those we love, to friends and acquaintances, to problematic people whom we wish we could more readily accept, to strangers, and finally, to the entire world.

And the practice of lovingkindness is portable: traditionally, you sit on a cushion, but you can just as easily be walking on a crowded street.

Jack Kornfield, another leading educator, has written that some people find it difficult to begin with themselves:

“We may feel that we are unworthy, or that it’s egotistical, or that we shouldn’t be happy when other people are suffering.” 

If that’s how you feel, Kornfield says,

“Rather than start lovingkindness practice with ourselves, I find it more helpful to start with those we most naturally love and care about.” [Start where it’s easiest, he suggests.] “We open our heart in the most natural way, then direct our lovingkindness little by little to the areas where it’s more difficult.”

If you choose that sequence, you might then circle back to yourself after that. Or move on to people whom you find difficult. Eventually, you open your heart to strangers and to all living beings.

Real-World Examples

How can this approach affect our everyday behavior? Salzburg has a short series of videos depicting various scenarios. In “Street Lovingkindness,” she hones in on Grand Central Station in New York City, a hectic place, during Rush Hour.

But, says Salzburg, “Don’t rush. Take in the world. Look at the people,” and silently send your good wishes to strangers, possibly adding “May you be joyful, peaceful, contented.”

She has also noted: If you’re stuck in traffic because an emergency vehicle is snaking through, you might say to yourself “I hope whoever needs that vehicle is OK.”  

Standing in line, she acknowledges, can be frustrating. You want to move faster, to get somewhere. Instead of fuming,

“take a breath, savor the moment. Feel your feet on the ground. Notice those in front and behind you. Fully acknowledge each person [mentally]: ‘May you be joyful, peaceful, contented.’ Just as we seek happiness for ourselves, may all beings be at peace.”

Suppose you’re sitting in your car,  in a traffic jam.

“It’s stop-and-go, you’re making no progress. You’re frustrated, annoyed, stressed out, tired of being stuck. Pause, take a breath, feel your body being seated, your hands on the wheel. Look at the others, all moving together. ‘May we be safe, healthy, happy, be at ease.’”

Salzburg speaks of compassion to self as being restorative, rather than allowing ourselves to be overcome by events. She explores our thought processes: “I’m a terrible person.” 

How is my holding onto negative thoughts healing me?, she asks. Detaching and running doesn’t work.

We can’t automatically make our pain—physical or emotional—go away, but holding on to our fear and projecting into the future adds to our suffering.

(There’s an oft-repeated phrase among mindfulness folks: “Pain is inevitable; suffering is optional.”)

Compassion, she says, is a unifying experience. It sparks the impulse to help someone else: we’re all vulnerable in some way.

“When a person says, ‘I’m overwhelmed,’ having a sense of community is a tremendous asset. Doing it all alone is hard. That’s the context for this practice.”

If you’d like to listen to a delightful interview with Salzburg, click on this link. Sarah Jones is a gifted actor who creates believable, very diverse characters with her voice and motions. She interviewed her friend Salzburg, asking questions as several different personae.

It’s great fun to listen to. In something many of us can relate to, one of the points she made was “Most days I can barely stand to read the news. But when I do lovingkindness, there’s a shift.”

Salzburg stresses that practicing lovingkindness doesn’t always mean saying “yes.” If you see a street person asking for money,

“whether or not you feel giving the cash would be useful is one thing, but whether you look at that person as a human being is another.”

It’s not new that we feel good about ourselves when we show kindness to others. But it’s something to relearn. In the supermarket where I shop, a tall, thin man is responsible for herding all the shopping carts.

I assume his job is simply to bring order to the carts that shoppers leave wherever they choose (usually not where the sign says “Return carts here”).

But he goes well beyond that job description. He is unfailingly gracious, smiling pleasantly and offering everyone a cart who approaches the store, or relieving us of the need to return them to the intended area. 

Last week, as I was walking to my car, I had a sudden impulse. I turned around and walked toward him. He thought I needed a cart and was about to give me one. “I’m done shopping,” I said. “But you’re so good at your work, and so gracious and helpful, that I wanted to give you this.”

I won’t miss the money, and I’ll long remember the look on his face as he thanked me profusely and blessed me. It was a small act in the scheme of things, but it made both of us feel pretty darn good.

Salzburg has heard it all, and she says there’s a common idea that lovingkindness is stupid, or gooey, or yucky. I like Daniel Goleman’s term: Muscular compassion. And that should lead to action, Goleman said:

“The Dalai Lama often talks to people with great aspirations, and, after he’s gotten them all roused up, he says, ‘Don’t just talk about it, do something.’ That’s part of the message in my book: Everyone has something they can do. Whatever means you have to make the world a better place, you need to do it. Even if we won’t see the fruits of this in our lifetime, start now.”

My Wish for Each of You–and for Us All

As the new decade dawns, I repeat, as I did at the end of 2018, the words I’ve learned from Jack Kornfield and other mindful meditators:

May you be filled with lovingkindness;
May you be safe and protected;
May you be well in body and mind;
Strong and healed;
May you be happy.

And may 2020 find us in a country and world of greater unity, peace, greenness, and kindness. We can make small gestures to move us in that direction.

Annie

How One Woman’s Breast Cancer Experience May Revolutionize Cancer Care

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mammograms for early detection

I love to write about good news. I especially enjoy elaborating on advances in the world of science during these times when science is too often attacked. This story shares some qualities with my recent post about the extraordinary Nobel Prize Winners in Physiology or Medicine. 

Like the Nobel discovery, this one seems destined to save lives and dramatically reduce suffering. It’s the result of one brilliant woman’s using her own status as a breast cancer survivor to create potentially dramatic changes in the detection and treatment of the disease.

My new hero is Regina Barzilay, PhD. She isn’t a physician, yet she seems to be upending medical practice for the better through the use of artificial intelligence (AI).

Barzilay is a professor of computer science at the Massachusetts Institute of Technology (MIT) and a certified genius: in 2017, she was the recipient of a MacArthur Fellowship “genius grant.” 

She and her team, which now includes experts from both MIT and Massachusetts General Hospital (MGH), have created computer algorithms that predict the likelihood of a patient’s developing breast cancer in the next five years. 

The model they designed began with a database containing pathology reports of more than 100,000 women treated at MGH over 30 years. Barzilay and her team then “taught” the computers to provide specific information from mammograms of more than 60,000 patients. 

According to an article in MIT News, 

“Trained on mammograms and known outcomes from over 60,000 MGH patients, the model learned the subtle patterns in breast tissue that are precursors to malignant tumors.”

Barzilay told Susan Gubar, who wrote about this remarkable work in Science Times, the special Tuesday section of The New York Times, that

“machines work more effectively than human eyes. They can register subtle changes in tissue—influenced by genetics, hormones, lactation, weight changes—that we cannot see.” 

Barzilay showed Gubar the results of her own mammograms from 2012, 2013, and 2014. The cancer that was diagnosed in 2014 was, in fact, evident in the two previous views.

I found myself deeply touched by that information, imagining what it must have been like for her to learn her cancer could have been caught and treated two years earlier, and seeing how heroically she turned her personal knowledge into this bold campaign to prevent other women from experiencing similar anguish—or worse.

Gubar reports that

“The enthusiasm Dr. Barzilay brings to this undertaking is fueled by her dismay at current approaches to cancer care. While being treated at MGH, she was struck by the high degree of uncertainty surrounding treatment of her disease.

“Why did her questions go unanswered about how other patients at the same hospital with similar tumors fared with this or that drug or with this or that surgery? Why was there so little information?”

The apparent explanation was that oncologists rely on the results of clinical trials in determining treatment regimens. That’s not surprising; they seek evidence-based medicine.

The problem Barzilay saw was that the trials enrolled just about 3 percent of eligible women, meaning 97 percent weren’t part of the picture. 

Barzilay termed this approach a “primitive practice” that was a “travesty,” Gubar reports, “especially because large volumes of information about patients accumulate in every hospital.” (Emphasis mine)

But a stumbling block to the work she proposed was that the data are written in “free-text” English, rather than in a form a computer could process. That’s when she and her colleagues began building the databases.

In one study, the Barzilay team’s model identified 31 percent of patients as high risk for future breast cancer, in contrast with the existing clinical standard, which identified 18 percent. That difference encompasses a great many women.

Once this work is more fully implemented, the result, Gubar writes, will be that

“New patients will be empowered by learning how tumors with particular characteristics responded to specific treatments. Machines accessing subsets of the population will also make it faster and cheaper for clinicians to identify patients with particular disease characteristics and to enroll them in clinical trials.”

One particularly valuable aspect is that the cancers are detected regardless of the patient’s race—an important consideration in view of the much higher breast cancer mortality rate among African-American women.

According to Gubar, similar efforts are occurring at Google, where AI specialists are examining scans for lung cancer. It seems reasonable to me, as a nonscientist, that this approach is potentially replicable with all sorts of cancers. (I’d welcome hearing from anyone with expertise in AI, cancer, or the intersection of the two fields.)

Barzilay knows buy-in from oncologists is critical to this effort. She sought to learn whether oncologists were reaching out to AI researchers; when she found that they weren’t, she also made one of her aims to enlighten them about these new possibilities.

Writes Gubar:

“Dr. Barzilay and her collaborators want to usher in the day when no woman is surprised by a late-stage diagnosis and when all breast cancers are curable.

“They also hope to solve the problems of over- and under-testing. Instead of a one-size-fits-all practice, the frequency of screenings and biopsies could be customized with sufficient data.”

That could be a huge benefit to patients. For example, at present, the MIT article notes, there is a discrepancy in screening guidelines, with the American Cancer Society recommending yearly screening beginning at age 45, while the U.S. Preventative Task Force says screening should be every two years, beginning at age 50.

And for implications for individual patients, Gubar points to the young women she knows who are aware that they have an inherited BRCA genetic mutation, which can substantially increase their risk for breast cancer (as well as for ovarian cancer).

With great anxiety, they are contemplating prophylactic double mastectomies—although there’s no assurance that such drastic surgery is necessary for them. The numbers of such women are increasing now that genetic testing is so readily available. 

Barzilay’s work can help women better face this difficult decision. In responding to Gubar’s query about such affected women, she stressed:

 “With a CD of their scan, we would be able to tell them their personal risk.”

I wish Dr. Regina Barzilay a long and productive life as she continually refines and expands her invaluable work.

Annie

Here’s Why This 2019 Nobel Prize Is Breathtaking…

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Do any of the following apply to you?

—You’re hard-pressed to find some good news in the public sphere
—You’re troubled about the anti-scientist trends swirling around
—You have, have had, or know someone who’s had anemia
—You have, have had, or know someone who’s had a heart attack or stroke
—You have, have had, or know someone who’s had cancer
—You’d like to live in a place with a higher altitude than you currently can handle
—You’d like to improve your sports performance

If so, you may find the 2019 Nobel Prize in Physiology or Medicine as exciting as I do. And the above list of diseases and circumstances is merely the beginning of what scientists believe will be the impact of the work the Nobel Committee has just recognized.

The three recipients, two Americans and a Brit, pieced together a series of discoveries—their own and some preceding and/or complementing their work—to discern what one scientist called the “thermostat” that enables cells to regulate the amount of oxygen needed to do its work: convert food into energy. The Nobel Committee referred to this mechanism as “one of life’s most essential adaptive processes.”

As the Nobel Prize press release states:

“The fundamental importance of oxygen has been understood for centuries, but how cells adapt to changes in levels of oxygen has long been unknown.”

The “thermostat” the honorees discovered is comprised of a series of molecular occurrences by which cells sense too much or too little oxygen and respond accordingly.

Describing the Breathtaking Work

(From the Nobel press release)

“Thanks to the groundbreaking work of these Nobel Laureates, we know much more about how different oxygen levels regulate fundamental physiological processes. Oxygen sensing allows cells to adapt their metabolism to low oxygen levels: for example, in our muscles during intense exercise.

“Other examples of adaptive processes controlled by oxygen sensing include the generation of new blood vessels and the production of red blood cells. Our immune system and many other physiological functions are also fine-tuned by the O2-sensing machinery.

“Oxygen sensing has even been shown to be essential during fetal development for controlling normal blood vessel formation and placenta development.”

These are the three new Nobel Laureates:  William G. Kaelin Jr., MD, of Harvard University in Boston, Massachusetts; Gregg L. Semenza, MD, PhD, of Johns Hopkins University in Baltimore, Maryland; and Sir Peter J. Ratcliffe, FMedSci, of Oxford University in the United Kingdom.

Concerning the relevance of their findings to major diseases, the Washington Post  quoted Isha Jain, a scientist at the University of California in San Francisco:

“If you think of the main causes of death in the US, three out of five are related to lack of oxygen,” [including heart attack, stroke, and respiratory diseases]. “Understanding how the body senses and responds to low oxygen is pretty fundamental to all these diseases.”

Semenza said he and his colleagues hope that new therapies may increase the passage of blood into tissue with reduced blood flow “in diseases such as coronary heart disease and also limb ischemia, which is a major problem, particularly in diabetics, leading in some cases to limb amputation.”

And then there’s cancer. The Nobel press release explains:

“The oxygen-regulated machinery has an important role in cancer. In tumors, the oxygen-regulated machinery is utilized to stimulate blood vessel formation and reshape metabolism for effective proliferation of cancer cells.”

Semenza told the Associated Press:

“Whereas most of the chemotherapy drugs are designed to kill dividing cells that are well oxygenated, there are no treatments that are approved to treat the hypoxic cells within the cancer. We believe it’s these cells that survive the therapy and come back and kill the patient.”

From “Bench to Bedside”…

Or from lab to life-saving: such action is well under way, the press release reports.

“Intense ongoing efforts in academic laboratories and pharmaceutical companies are now focused on developing drugs that can interfere with different disease states by either activating, or blocking, the oxygen-sensing machinery.”

The first clinical application, a drug to combat anemia, was recently approved in China, and it is now under consideration in several European countries.

Semenza’s work was seminal to the total effort. In the 1990s, he and his group identified genes that were activated when oxygen levels were low to raise the levels of erythropoietin (EPO), a hormone secreted by the kidneys essential to producing the oxygen-laden red blood cells.

The oxygen-sensing mechanism was originally believed to be located only in the kidneys, but both Semenza and Ratcliffe subsequently found, among other things, that it exists in nearly all cells.

Moving from the profound to the less-so, The Washington Post notes that:

“This is the same basic mechanism behind doping, in which endurance athletes try to increase their supply of oxygen-carrying red blood cells.”

Though Semenza’s early article describing that research has now received thousands of journal citations, it was initially rejected by the “top tier journals,” which, he said, “didn’t find it to be of sufficient interest to warrant publication.”

(A note of encouragement to all who aspire to publication in any field of endeavor, don’t you think?)

For those who are interested in the scientific nitty-gritty, the Nobel release provides the road map of individual discoveries by the three researchers and others that yielded this dramatic finding.

Lessons Beyond the Discoveries Themselves

One of the things I especially like about this story is that these men, while working independently over decades, also shared their unpublished data with one another—“sometimes at scientific meetings, sometimes at the bar,” said Kaelin.

No secret patents here; no rivalry to be “the first.” As one made a discovery that he knew was an important piece of the puzzle, he described it to his colleagues.

I’ve no idea whether, or to what extent, this collaborative approach was influenced by their funding sources, but it’s worth noting that a National Institutes of Health (NIH) press release touted the US government’s role in supporting both American scientists’ work, and the American Heart Association stated it underwrote Semenza’s early work. The European Research Council (ERC) supported Ratcliffe’s work.

Two more issues are worth noting. One is that Semenza, who is a professor of genetics at Johns Hopkins, credited his wonderful high school biology teacher, the late Rose Nelson.

“She used to say to us, ‘When you win your Nobel Prize, I don’t want you to forget that you learned that here.’ She just assumed that one of us was going to do that…She was my inspiration, and I think that is the importance of teachers, to serve as that kind of spark.”

The other is Kaelin’s emphasis, as the Washington Post reported:

 “The prize underscores the importance of doing research to follow curiosity and unravel basic biology. He and the other scientists hoped, but did not know, that unraveling how cells sense oxygen could spark ideas for new approaches for human diseases, including stroke and cancer.”

Said Kaelin:

“This kind of research is increasingly under threat. It’s much easier for fundraisers and policymakers to say we will support scientists, but…tell us how it will improve outcomes in five years.

“When you’re doing real science, you have to be prepared to take the road where it takes you—and if you’re doing science, it’s hard to predict where the road is going to take you.”

Will you join me in a virtual round of applause for scientists dwelling for decades on basic research, facilitated by public funding?

Their research won’t always take us where these three eminent researchers have—but when it does, the benefits to us, individually and worldwide, can be immeasurable.

Annie

A Very Different Tumble Into the Weeds…

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Here I go again! Only this time, I’m eager to join the action…I think.

As you may know, in two previous posts, I’ve written about my ambivalence concerning the legalization of marijuana. Each time, I got new subscribers among the happy pot community, who somehow overlooked my ambivalence (or seized on my description of my single, and singular, pot experience) and adopted me as a kindred spirit.

That’s fine; I welcome anyone who’s interested in what I have to say—and I would be happy to have them join our dialogue, though so far they’ve merely silently “liked” my posts.

For the record, in researching a response to a comment after my second post on the topic, I came across an LA Times Op-Ed that stressed we know much less about the impact of marijuana than we might because the federal government has for so long forbidden its use—even for research.

I found that editorial persuasive, so I’ve moved from ambivalence to being cautiously OK with legalization. I am also bowing to the inevitable, and hoping legalization does all the good things proponents claim (like diminishing the racial injustice in prosecutions and reducing the power of drug lords).

But I still worry about young brains because that’s where the most deleterious effects of use occur. In fact, though many states have passed legislation legalizing marijuana for individuals age 21 or older, some experts say it should be 25 because the developing brain is still deeply affected until then.

That’s not my purpose here, however.

Today we’re talking CBD (cannabidiol), derived from the part of the marijuana/hemp plant that, unlike THC (delta-9-tetrahydrocannabinol), doesn’t create a high.

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Courtesy of Pixabay.com

Interestingly, though the federal government continues to consider marijuana illegal, it holds a patent for CBD; National Institutes of Health scientists found several decades ago that in test tubes, an in-depth Sunday New York Times Magazine article reported,

“…the molecule shielded neurons from oxidative stress, a damaging process common in many neurological disorders, including epilepsy.”

That finding has been validated, as described below.

And now there’s a federal law legalizing CBD products made from hemp, provided they contain 0.3 percent or less of THC.

Unless you’ve adopted a net-free existence on some desert isle, the chances are you’ve heard about CBD. It’s available everywhere, purportedly for everything that ails you, from back pain to anxiety to alleged cancer cures (the FDA cracked down on that one), to social phobia (that’s in the testing stage). My dentist is now selling it in his office, for goodness sake!

While CBD seems to have taken the country by storm, thus far its efficacy has been documented only in treating epilepsy in children; it’s FDA-approved for that indication.

But according to a Consumer Reports survey, 64 million Americans have tried CBD in the past year, and most said it was effective, particularly for anxiety. Almost three-fourths reported no side effects,

Based on anecdotal evidence and what I’ve read to date, I’ve been intrigued by the prospect that it might be helpful to me by a) reducing the frequency of my migraines; b) relieving my stomach issues that I know—as one of a long line of “gut” people—have an anxiety component; and c) alleviating my arthritic knee pain, thereby forestalling my need for a second knee replacement, which I most emphatically don’t want to have.

I discussed the possibility of my using CBD with my neurologist, a superb physician/researcher and compassionate soul.

He said he had no objection to my trying it, and it had, in fact, helped some of his migraine patients. However, he hasn’t sought a license to prescribe it because it isn’t evidence-based for migraines at this point. He referred me to a neurologist who does prescribe it.

I made an appointment. For a mere $750 initial visit (this doctor doesn’t accept Medicare), he would take my migraine history, give me a thorough exam, and hand me a prescription to a dispensary he deals with.

But when I looked over the forms I was to complete before seeing this new physician, I realized that none of the questions were relevant to me. I do get more migraines per month than my neurologist and I would like, but I don’t suffer from them. That’s due to the wonders of the pharmaceutical industry.

Yeah, they’re doing lots of awful things with pricing, and regulation is clearly needed. But I must acknowledge that the appearance of sumatriptan decades ago transformed my life.

Before it, I lost full days to intractable pain and nausea that made me think: If only the nausea would go away, I could tolerate the pain. Now, I feel a twinge, take a pill, and I’m good to go ten minutes later. So I didn’t need this new doctor’s extensive questioning, to which I would repeatedly respond with NA (not applicable).

I also didn’t need a thorough exam, as I’d just had one in the very capable hands of my neurologist’s fellow—under his guidance.

So the second thoughts arose, and not solely from my wallet, which was sending clear question marks to my prefrontal cortex, something along the lines of “Are you nuts? Paying $750 for a prescription to take to a pharmacy?”

I cancelled the appointment and sought my neurologist’s advice about how to proceed. He hadn’t known his colleague didn’t accept Medicare. When I explained why I cancelled, he said: “For you to spend $750 to get handed a prescription to take to a pharmacy is nuts!”

Most people buy CBD independently—without a doctor’s involvement. I felt concerns about that approach because this is an unregulated market. It’s caveat emptor: Let the buyer beware!

With the gold rush out there, the unsuspecting consumer may be buying a product that has too much or too little CBD, and/or it may be adulterated.

For example, The New York Times described a graduate student in Virginia who complained of a “heart-pounding, hallucinogenic high he had neither expected nor wanted to have.”

Testing revealed he had vaped a liquid containing CBD, but it also contained a synthetic compound, 5F-ADB, that the Drug Enforcement Administration has associated with anxiety, concussions, psychosis, and even death.

So I was concerned about quality and dosage. Actually, I was more concerned about dosage because I had located a few sources that seemed reasonable, including my dentist, who assured me he’d fully investigated the purity of the products he planned to sell.

I’m also considering two other possible sources: one is owned by a Florida pharmacist who developed the product and seemed very cautious when I heard her on an NPR discussion; another is being frequented by many parents of children with epilepsy, who spoke highly of it in that lengthy Sunday New York Times Magazine article.

That left the question of dosage, and my neurologist said he’d do some research and advise me about what would be appropriate.

So stay tuned for the next installment of “Annie Goes for the Gummies.” I’m not sure why, but one of the companies under consideration offers many of their products (for adults) in the form of Gummies. Should that send me a warning signal? I’m fine with a tincture under my tongue, as some friends have described, or a capsule, or a cream for my knee. But Gummies? (And yet, I occasionally indulge a strong desire for Swedish Fish, suspecting that my body sometimes has a weird need for red dye #whatever, so maybe the Gummies hold some promise…)

If you or someone you know has had experiences with CBD that you’re willing to share, I’d love to hear about them.

Annie

The Democrats’ Debates Were Disappointing, and Yet…

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Candidates in Second Democratic Presidential Debates 2020

My Oh My! So much drama—even attacks on No Drama Obama!

Let me state at the outset that I had never intended to become so overtly partisan in this blog. I even wrote a post a while back explaining why I wouldn’t discuss the elephant in the room (President Trump) because so much stuff was appearing elsewhere, and I wanted to focus on finding our common ground.

My overarching goal remains, and in my own way, I’m still trying to do that.

When the President is an incumbent, it’s assumed the election is a referendum on him. But now that this President has made blatantly racist attacks on people of color a feature of his daily rants, I believe the 2020 election is a referendum on us.

Who are we as Americans? What kind of country do we look forward to, and how devoted are we to working toward a more perfect union?

Will we give our seal of approval to this man for another four years? I know some of you reading this post are Republicans with varying degrees of support for Trump. I’m not attacking you personally or trying to change your minds. 

Rather, I’m assuming that most American voters—Democrats, Independents, and growing numbers of “Never Trump” Republicans—are seeking a reasonable alternative to Trump and want to see Washington functioning again to pass common-sense legislation in their behalf.

I believe/hope that people are eager to denounce him at the ballot box, proving that he doesn’t represent the vast majority, and that we are seeking leadership that unites us in hope and common purpose, rather than divides us in hatred and fear.

In that spirit, I offer you my thoughts after viewing the second round of debates—and I’ll explain why I found them sorely lacking.

It’s still early, but I saw little inspiration among the 20 candidates on the stage in Detroit. Part of the problem, I believe, was CNN’s approach.

It was clear that CNN wanted a food fight: the questions were designed to encourage candidates to attack one another. I didn’t think that was good TV. I also thought it was poor broadcast journalism and unhelpful for educating the public.

Admittedly, it’s tough to stage interesting debates among 10 candidates, and I felt bad about how little time each person had to make her/his points. 

But the questions were also unrevealing in eliciting what kind of Presidents they would be. 

Healthcare is a critical issue; it was largely responsible for the Democrats’ winning the House in 2018. Americans want to know they will have decent health care that covers preexisting conditions, is within their means, and is dependable, regardless of their circumstances. 

The discussions were sometimes too wonky and confusing for viewers and at the same time often inadequate, leaving out important issues, such as cost to taxpayers.

I wish each candidate had given this answer: “We’ll bring the best minds together to come up with the most realistic affordable plan that covers the most people possible.” 

In other words, we’ll progress beyond Obamacare without gutting it, adding the public option that was originally intended, and regulating both the insurance companies and Big Pharma.

Many other countries have private insurance companies as part of their healthcare mix; they simply regulate them more aggressively than we do.

Medicare for all vs “Anything less lets insurance companies ruin America” is to me an unnecessarily divisive issue.

I think improving Obamacare would satisfy most Americans—without frightening them.

And how quickly people have forgotten how hard that battle was—that passing the legislation was a “big f—–g deal,” in former VP Joe Biden’s memorable words. More about all-important processes appears below. 

If the public option works as intended, we’ll get to Medicare for all but won’t immediately send our economy into a tailspin.

Healthcare is now about 18% of our GDP. We need a smooth transition to the next stage. I haven’t heard any Medicare for all candidate discuss this point.

But most importantly, the emphasis should be on the fact that every Democratic candidate believes that healthcare is a right and supports expanded coverage, while Trump and the Republicans have been decimating Obamacare and, in all the years they claimed to find an alternative, have not done so.

It is simply not an article of faith in the Republican Party as it is among Democrats. Quite the contrary. 

As the terrible mass shootings mount up, I can’t write this post today without including sensible gun legislation. This is another issue where the majority of the public agrees, and so do all the Democratic candidates.

Not so the Republicans in Congress and the President. And despite his palliative words after the most recent shootings, since Trump took office, we’ve had a substantial uptick in domestic terrorism. We know white nationalists claim him as one of their own. If he cared to change that image (and possibly reduce the carnage), he would change his rhetoric.

With gun safety legislation, again, process is critical, as we’ll discuss below.

Foreign policy, which is probably the most important aspect of a President’s efforts, and is currently fraught with dangers that Trump both inherited and has created, took up a mere five minutes of the 2-1/2 hour debate.

I am puzzled why, just shortly after the Mueller testimony, CNN felt that discussing the role of Russia was barely worth mentioning. And there were no discussions of Iran, North Korea, Syria, and other potential hot spots.

Since a number of the candidates have had little or no direct involvement in this essential component of being President, it behooves the next debate organizers to build in adequate time and questions that reveal the candidates’ world views and thought processes. 

I was impressed, for example, with Washington Governor Jay Inslee’s stating that he voted against entering the war in Iraq when he was a member of Congress. (He took Vice President Biden to task for voting for it.) 

Inslee said the arguments for war were unconvincing. In an interview after the debate, when he was asked why so many Democrats voted to go to war, he explained that in the post-9/11 environment, the drumbeats for war were very difficult to withstand. But he did withstand them—a fact that to me says a lot about the man.

Speaking of Inslee brings us to climate change, which he has made the focus of his campaign —though not as a single issue: he has tied it to economics, undue burdens on poor and minority communities, and other important topics.

He has thought and studied the issue extensively and is clearly the candidate most deeply committed to quick concrete actions to confront climate change.

And while it’s good that every Democratic candidate accepts the scientists’ warnings and promises to act, I find his commitment especially comforting. 

One extremely critical issue hasn’t come up in either debate: the judiciary. 

I am quoting extensively here from two articles. One, by Dahlia Lithwick, is titled “Democrats Still Haven’t Learned Their Lesson About the Courts.”

The other, which she cites, written by Ezra Klein, is “Pete Buttigieg had the most important answer at the Democratic debate.”

I find them both important in terms of those critical process matters I referred to earlier, and I hope you’ll read them in their entirety.

Let’s start with Klein’s article in Vox. Here’s where reality lies—beyond fine policy ideas and whether they’re progressive enough.

“South Bend, Indiana, Mayor Pete Buttigieg gave the single most important answer at Tuesday’s Democratic debate.

“It came after a lengthy section in which the assembled candidates debated different health care plans that have no chance of passing given the composition of the US Senate and then debated decriminalizing unauthorized border crossings, which they also don’t have the votes to do, and then debated a series of gun control ideas that would swiftly fall to a filibuster and, even if they didn’t, would plausibly be overturned by the Supreme Court’s conservative majority.

“That’s when Buttigieg spoke up:

‘[This is] the conversation that we have been having for the last 20 years. Of course, we need to get money out of politics, but when I propose the actual structural democratic reforms that might make a difference — end the Electoral College, amend the Constitution if necessary to clear up Citizens United, have DC actually be a state, and depoliticize the Supreme Court with structural reform — people look at me funny, as if this country was incapable of structural reform.

‘This is a country that once changed its Constitution so you couldn’t drink and changed it back because we changed our minds, and you’re telling me we can’t reform our democracy in our time. We have to or we will be having the same argument 20 years from now.’”

Klein continued:

“So far, I’ve found Buttigieg’s campaign underwhelming on policy. But where he’s clearly leading the field is his emphasis on structural reform. Buttigieg isn’t the only candidate with good ideas on this score — Elizabeth Warren and Jay Inslee have been strong on this too — but he’s the only candidate who consistently prioritizes the issue.

“The reality is Democrats are debating ever more ambitious policy in a political system ever less capable of passing ambitious policy — and ever more stacked against their policies, in particular.

Their geographic disadvantage in Congress is only getting worse, Republicans control the White House and the Senate despite receiving fewer votes for either, and an activist conservative Supreme Court just gutted public sector unions and green-lit partisan gerrymandering.

“Policy isn’t Democrats’ problem. They’ve got plenty of plans. Some of them are even popular. What they don’t have is a political system in which they can pass and implement those plans.

“Buttigieg, to his credit, has a clear theory on this. When I interviewed him in April, he argued that ‘any decisions that are based on an assumption of good faith by Republicans in the Senate will be defeated.’

“The hope that you can pass laws through bipartisan compromise is dead. And that means governance is consistently, reliably failing to solve people’s problems, which is in turn radicalizing them against government itself.”

Now let’s briefly look at Lithwick’s article in Slate:

“We now know that a single Trump judge can gut the Affordable Care Act, or permit a wall to be built on the Southern border, or try to end Roe v. Wade.

This isn’t a thing to contemplate after a Democrat wins the presidential election. It is, with every passing day, the reason to doubt whether any Democrat can win the presidential election ever again. And the same is true for the Senate, and for the House. Which is why it has to be a first-order discussion, not last. 

“As Klein wrote: ‘This is what Buttigieg gets: To make policy, you have to fix the policymaking process. Some of the other candidates pay that idea lip service, when they get pushed on it. But he’s the one who places that project at the center of his candidacy.’

Lithwick concluded:

“The Democrats on the debate stage are embarrassed to be caught out without answers to questions about battles that their constituents cannot afford for them to continue to lose. Democratic voters showed up in 2018 in part because of their horror at losing the Supreme Court.

Sure, it’s embarrassing that Democrats have been badly outplayed by Mitch McConnell, who follows no norm or judicial ideal beyond ruthless pursuit of power.

“But it should be more embarrassing that reforming the courts has been deemed too hard to warrant a single debate question. By all means let’s talk about Trump and impeachment and ‘kitchen table issues’ and the environment; they all matter.

But the fact that the machinery of justice has been captured by a monied minority means that democracy itself is on the ballot. That should matter enough to warrant a question.”

All this is why I found the debates so disappointing. While the candidates were attacking each other—and President Obama, through Joe Biden—and discussing their plans for what they’ll accomplish once they become the President, for the most part they didn’t talk about these huge, powerful forces at all. 

And this is where their energy—and ours—is essential.

I intend to vote for whoever wins the Democratic nomination, hoping that person is sufficiently inspiring to energize a broad swath of diverse constituents.

I think the divisions between moderates and progressives figure less in most voters’ minds than does their sense of the decency, competence, integrity, and leadership skills of the individual they’d like to see in the White House—especially now. 

Thus, I believe it is essential that we try to defeat Trump with the largest possible mandate, demonstrating total rejection of his racism—as well as his corruption, incompetence, divisiveness, and unwillingness to protect the US from those who have directly threatened our elections and are continuing to do so. 

But clearly that’s not enough. It is so important that we educate ourselves and make our voices heard about these structural issues that are making it difficult, if not impossible, to get anything substantive done in Washington.

Democrats need to take the Presidency, House, and Senate, and then focus on the critical changes needed—before a minority party eliminates any chance of the majority’s will being enacted. 

These are large challenges,  but while some of the candidates talk about the need for “Big Ideas,” we need to let them all know what those big ideas must include. We made it to the moon 50 years ago, you’ll recall. We can do this.

And we must.

Annie

A Cautionary Summer Tale

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I have a few friends who are medical nihilists (several of them are married to physicians). They avoid medical care whenever possible, rarely see a physician, and when they go, generally ignore the physician’s instructions.

I am cut from a different cloth. I go to the doctor for preventive care, get my flu shot every year, and seek medical guidance if I’ve had a problem for more than a few weeks.

I do have several chronic conditions and a bionic knee and wrist. However, I am fortunately, at this point, in good health. (Cue my late mother’s voice here, making clucking sounds to ward off the evil spirits.)

I tend to be super vigilant about medical matters. In fact, as I’ve written previously, I tend to catastrophize. That sudden pain in my leg? The one that’s probably a pulled muscle? Well, it feels hot, so it could be a blood clot, couldn’t it? (I also meditate, but sometimes the worry forces overwhelm the calmness regimen.)

And, having worked as a medical writer/editor in the past, I realize that I possess just enough medical knowledge to be a danger to myself and others. (I do, however, refrain from prescribing–and for the most part avoid misdiagnosing my friends and family.)

Although it’s gotten worse in recent years, as those around me have died—or narrowly escaped death—this tendency on my part to focus on all things medical has been ever so.

I think I’ve known the seven warning signs for cancer since I learned to read. For those who don’t share my fixation, the first sign is “Any sore that does not heal.”

But the tiny mark on my nose seemed insignificant—certainly not a sore as I understood the term. Occasionally, a little dry skin flaked off and the skin beneath looked slightly pink; then it quickly returned to its previous state. I found it curious, but not at all alarming. This went on for months.

One night, when the spot looked pinkish, I dabbed it with a little cortisone cream that my dermatologist had given me for a previous condition.

Shortly thereafter, I stepped into the shower. When I stepped out, I caught a glimpse of my face in the mirror, and blood was gushing from that tiny spot on my nose—it seemed like several tablespoonfuls.

My dermatologist saw me the next day. “It doesn’t look like anything,” she said, poring over it with her magnifying glass. “But whenever there’s bleeding, we do a biopsy.”

The biopsy was definitive for carcinoma, but wishy-washy as to type. At varying times I was told it was a basal lesion with some squamatization, a squamous lesion, or a “collision lesion” of both cell types. The latter made me envision two small bumper cars packed with differing cells, going at each other at high speed.

One point was certain: the innocuous looking thing had to go. I was referred to a Mohs surgeon for a procedure in which the lesion is removed layer by layer while the patient waits for the biopsy report stating that the margins are clear: the cancer is gone.

At the pre-op visit, the surgeon’s nurse drew a fairly large circle around the lesion with a green marker pen. That should have alerted me to what was ahead; it did not.

The surgeon explained her procedure and then said, “I think we should have a plastic surgeon on standby to close the wound.”

I was puzzled. It was so small—surely a few stitches would do. Then she said, “You have a fine aquiline nose; I think it’s wiser to have a plastic surgeon do the closure.” OK. The plan was that I would see a surgeon she works with on such cases; she’d complete her work, bandage me up, and he’d close the wound later that day. Seemed reasonable.

But when I met the plastic surgeon pre-op, he began describing what sounded like pretty dire procedures. “We can take a skin graft from another part of your body that’s close to the color of your nose,” he said. “Or we can do a flap from your forehead.” All of a sudden, this tiny lesion was wreaking outsized havoc on my face.

I spoke with the Mohs surgeon’s nurse, who assured me that the plastic surgeon gave “worst possible scenarios.” I felt better—for a time. I had agreed to the graft, if needed, because the plastic surgeon said if I didn’t like the results, he could always do the flap. But once the flap was done, no revision would be possible.

Fast forward: the cancer was gone after a single layer’s removal: very good news. The plastic surgeon told me to come right over. He looked at the wound and said, “We’ll take a graft from your clavicle; do you mind a scar?”

I was willing to forgo a pristine clavicle for a chance that my “fine aquiline nose” wouldn’t be seriously disfigured. I will acknowledge that my attachment to it has been more than physical and utilitarian.

I was awake through the surgery, and we all laughed at the surgeon’s stories of his parents’ youthful indiscretions. Not sure why he raised that issue, but it did pass the time and take my mind off the snipping and sewing.

He had warned me the healing would take about a year, so I’m more than three-quarters of the way there. There have been bumps along the way—just recently, one quite literally.

I was walking through a revolving door and, certainly not practicing my mindfulness, stepped ahead before the opening had reached me—like a tiny bird ramming into a window. The only part of me that hit the glass was my nose—straight on.

I began icing it as soon as I could and called the plastic surgeon’s office to see if I should do anything else. He returned my call in minutes—an unusual attentiveness that suggested concern.

“In a battle between a door and a nose, the door always wins,” he said brightly. (He’s a good surgeon, but I didn’t need the wisecrack.) “Do you think it’s broken?” he asked. I said I really didn’t think so; it didn’t hurt that much and was simply quite red. “Keep icing it on and off all day,” he responded. “It should be OK.”

The next day, when I awakened to find the skin graft in place and not beside me on my pillow, I appreciated how fortunate I was not to have damaged myself seriously.

Now that I have a portion of my clavicle attached to my nose, I’ve thought about whether it’s still appropriate to call it a nose. It seems more like a hybrid of two heretofore autonomous body surfaces, finding their way to peaceful coexistence.

It’s a strange phenomenon, but I profoundly recognize that in the scheme of things, so many people struggle with far worse medical conditions for many years. I’m very grateful for my situation and do, mindfully, appreciate every day.

Some mildly annoying lifestyle changes go with this new territory. I’ve had three squamous lesions in less than two years (two were in situ—precancerous), of which two were on my face. Thus, I’ve been warned by both the Mohs surgeon and my dermatologist that although the skin damage happened years ago, I must now take extra precautions: sunscreen (more than 30 SPF) all year round, rain or shine; hats with brims; sunglasses; and long sleeves.

In this 90 degree heat, I get some strange looks, but so be it. A woman of mystery–perhaps a secret agent, who has traded her traditional trench coat for UPF (ultraviolet protection factor) garments.

So ends my cautionary summer tale for you—especially those who are young and carefree. Just one or two bad sunburns can do a lot of damage, and mine occurred before we were worried about losing the protection of the ozone layer.

Don’t be cavalier about your exposure to the sun. And please: don’t ignore any small lesions, no matter how innocuous they may appear, if they hang around for a while.

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One more thing: if you’re even thinking about going to a tanning parlor, fuggedaboudit!

Your thoughts, experiences…?

Annie

From Three Cookies to One–or None: How Do We Break Our Bad Habits?

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Did you know that Facebook Addiction Disorder is really a “thing”—and not a FAD? (Sorry, another bad pun—and so soon!) It’s not in the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM-5), but it, and obsessive Internet use in general, is increasingly drawing the attention of psychiatric researchers.

I plead guilty. Not to checking Facebook frequently, though I do look at it most days. But I am heavily Internet-dependent—so much so that I recently had to upgrade my iPhone because I ran out of space and couldn’t get access to many of my apps (including my mindfulness app, which is, coincidentally, supposed to keep me in the moment).

There’s just so much stuff out there to learn, including what all the wonderful bloggers I’ve become acquainted with are up to, and why the plural of octopus is octopuses, not octopi (which I’ve written about), and what’s the name of that movie I saw years ago/last week, and, in truth, how many people are visiting my current post?

(My new phone has a feature that I could live without—almost as though it’s in league with these researchers [?]: it tells me my average daily screen time from the previous week, in hours and minutes.)

None of this may sound very serious, but it’s all tied up with how our brains function. And, perhaps not surprisingly, it’s connected to all those other areas of our lives that we know we should better control—such as overeating, smoking, and stressing about things real or imagined.

Why, if we’re so smart, and we know what we should do, is it so hard for us to follow through? Are there ways that we can take better control of our lives—without investing a fortune of time, money, and energy?

Judson Brewer, MD, PhD, thinks there are. Brewer is an addictions expert, an associate professor in psychiatry at the School of Medicine at Brown University, where he serves as the Director of Research and Innovation at the Mindfulness Center, as well as a research affiliate at MIT.

He’s the author of a book with the less-than-succinct title: The Craving Mind: from cigarettes to smartphones to love, why we get hooked and how we can break bad habits, published by Yale University Press in 2017.

Brewer has successfully used mindfulness training to get people to stop smoking, lose weight, reduce anxiety, and break all sorts of bad habits. I haven’t read his book, and none of the three videos of him that I watched mentioned “love,” so I regret that I can’t enlighten us in that regard. The quotations in this post are primarily from a TEDMED Talk he did in 2015. The bolding for emphasis throughout is mine.

It’s no small irony, by the way, that he’s now creating apps to bring this training to people where they’re most likely to use it. See www.goeatrightnow.com; www.unwindinganxiety.com; www.cravingtoquit.com. He offers free trials, but I’m not endorsing these, and I haven’t tried them.

If you’re thinking, “Oh, Annie, not another thing about mindfulness,” I can tell you that although I am a practitioner and I believe both individuals and the world would be better off if more of us were, I think you can put some of Brewer’s insights to work without getting deeply involved in the practice.

Let’s start with the brain because that is, of course, central to this approach. The prefrontal cortex, which Brewer points out is “that youngest part of our brain from an evolutionary perspective,” is where cognition resides.

So we can figure out, for example, that having a dozen brownies in a single sitting is not a smart thing to do. But they taste so good, and if we’re sad, or stressed, we just keep that hand-to-mouth action going. Sometimes we don’t feel very good afterward, but that doesn’t stop us from doing it again.

This behavior is linked via evolution to our needs for survival. In a convoluted way, here’s how we get to that dozen brownies. Calories equal survival. And sugar, as we’ve increasingly learned, holds a special allure. As Brewer explains, our bodies send a signal to our brains:

”Remember what you’re eating and where you found it…See food, eat food, feel good, repeat. Trigger, behavior, reward.

Then we learn that the food we began eating for survival can serve other purposes:

“You know, next time you feel bad, why don’t you try eating something good so you’ll feel better? We thank our brains for the great idea…and quickly learn that if we eat chocolate or ice cream when we’re mad or sad, we feel better.”

What began as survival has become something more complex.

“We’re fighting one of the most evolutionarily conserved learning processes currently known to science, one that’s conserved back to the most basic nervous systems known to man.”

That is positive and negative reinforcement. And the problem is that, as sharp as our thought processes may be, they’re simply not strong enough to hold back the forces of stress. As Brewer says:

“We’re using cognition to control our behavior. Unfortunately, this is also the first part of our brain that goes offline when we get stressed out.”

Of course, the process is more complicated than this, involving the neurotransmitters dopamine and serotonin, as well as other portions of the brain, but I think we can get the idea without a detailed neurology lesson.

Brewer doesn’t mention the reptilian brain, the oldest portion, the one that enacts the fight/flight/freeze response under stress. When we need cognition the most, the reptilian brain slithers to the forefront. (I’ve written about my personal struggle between my prefrontal cortex and reptilian brain previously. Guess who won?)

To find out how to break this cycle, it’s worth looking at the success Brewer and colleagues have had in helping patients stop smoking, which is the toughest addiction of all to overcome. They tested whether mindfulness training could help people quit.

Brewer has explained that when he started practicing mindfulness meditation, it was a terrible strain to keep his focus on his breath, to try to continue paying attention. I think anyone who’s ever tried mindfulness understands this challenge; I certainly do.

But he resolved the struggle when he realized that he needed to turn to the “natural reward-based learning process” of “trigger, behavior, reward,” adding what he called “a twist: What if we just got really curious about what was happening in our momentary experience?”

He applied the concept of curiosity to the smoking research. Instead of telling their patients not to smoke, he and his colleagues said the reverse. “Smoke, but be really curious about what it’s like when you do.” And here’s a report of how it worked. One woman said:

“Mindful smoking: smells like stinky cheese and tastes like chemicals. YUCK!”

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Says Brewer:

“Now she knew, cognitively, that smoking was bad for her; that’s why she joined our program. What she discovered just by being curiously aware when she smoked was that smoking tastes like s—t.

“Now she moved from knowledge to wisdom….the spell of smoking was broken. She started to become disenchanted with her behavior.”

This happens over time, he emphasized: “as we learn to see more and more clearly the results of our actions, we let go of old habits and form new ones.”

Brewer refers to one study they did that found mindfulness training (MT) was twice as effective as the American Lung Association’s Freedom From Smoking (FFS) treatment, which is considered the gold standard. The MT group both reduced their smoking and showed continued greater abstinence during followup.

It’s still not easy. The prefrontal cortex, Brewer says,

“understands on an intellectual level that we shouldn’t smoke. And it tries its hardest to help us change our behavior, to help us stop smoking, stop eating that second, third, fourth cookie. We call this cognitive control.

And then we fall back into our old habits. But like the woman smoker, once we understand our habits on a deeper, more visceral level, our interest in pursuing them lessens.

With mindfulness, instead of turning away from unpleasantness or fighting it, we turn toward it and regard it with curiosity, which is naturally rewarding. And it helps us see that cravings are discrete sensations that come and go, so we can manage them from one moment to the next, “rather than getting clobbered by this huge, scary craving that we can choke on.”

In an interview, Brewer differentiates between intellectual curiosity and experiential curiosity. The one that makes a difference is the latter.

Our curiosity, he contends, permits us to

“step out of our old, fear-based reactive habit patterns, and we step into being. We become this inner scientist where we’re eagerly awaiting that next data point.”

So people who smoke or eat due to stress or feel compelled to do any of a myriad of things they know they shouldn’t can be encouraged to be curiously aware when the urge hits them. To paraphrase an old adage: Curiosity becomes its own reward.

And now we return to the Internet. Do you surf or check your email when you’re bored, or lonely, or just feel you have to? And then feel bad about all the time you’ve wasted, and what else you could have accomplished, but didn’t?

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Brewer suggests trying instead to be curiously aware of what’s happening in your body and mind at that moment. You’ll have the chance either to “perpetuate one of our endless and exhausting habit loops—or step out of it.”

He concludes:

“Instead of ‘see text message, compulsively text back, feel a little better,’” he says, do this:

“Notice the urge, get curious, feel the joy of letting go. And repeat.”

How does all of this strike you? Do you find it feasible? Are you tempted to try it? Do you have stories to share about how you have overcome bad habits—or have failed to do so?

Annie

My Journey From DNA Test Skeptic to Participant

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Not so many months ago, I wrote a post about the “Wild West Marketplace” of consumer genetic testing. That description came from Laura Hercher, a highly respected genetics counselor whom I interviewed for the piece. Though our focus primarily was on the entertainment aspect of consumer DNA testing (tracing one’s ancestry, etc.), we also discussed the more serious health implications. I find the topic fascinating, but I thought I’d leave it there. Hercher pointed out many of the flaws and potentially false results that these tests may yield.

Then events made me take a second look at the feasibility of genetic testing in my own life: my sister died of pancreatic cancer, only 43 days after she’d been diagnosed. (Despite our grief, in view of the horror of this disease, we all realized that the brief time period was a blessing). Knowing that my mother had had bilateral mastectomies for breast cancer, and that her mother had died in her 50s from what we thought was liver cancer but could have been a metastasis from breast or other site, I began to think about my likelihood of developing a heritable cancer. 

And—even more to the point—I thought about my daughters. My gynecologist had told me years ago that I owed it to my daughters to find out if I carried variants in the BRCA1 and/or BRCA2 genes, which are associated with cancers of the breast and ovaries and—it turns out—pancreas as well. At the time, genetic testing cost more than $5000, so I never followed up on her recommendation. It’s worth noting here that the preponderance of women who develop breast cancer have no known risk factors.

As a former health writer/editor and continuing catastrophizer, I immediately felt I needed more information about pancreatic cancer. The heritable component ranges from 5% to 10%. But I knew that unlike some cancers, which are now being regarded as chronic diseases, pancreatic cancer carries a prognosis that is usually dire. The American Cancer Society reports that pancreatic cancer accounts for about 3% of all cancers in the US—and about 7% of all cancer deaths. That high mortality rate is because it’s nearly always diagnosed late, after it has metastasized. 

But I wondered: if I tested positive for the pancreatic cancer variant, were there any monitoring programs that might make it possible to find the disease at an earlier stage? And were there medical genetic tests that were more reliable than some of the “consumer DNA” ones that Hercher had discussed?

My research led me to Johns Hopkins, one of the medical centers doing considerable work in this field, and they did, indeed, have a surveillance study for those who’d tested positive for heritable pancreatic cancer. Knowing that gave me a sense of control in the midst of my personal concerns and while my sadness at the sudden loss of my sister was still quite raw. The people I spoke with there suggested that I have heredity genetic cancer screening done—and they recommended as a reliable company Color Genomics.

I contacted Laura Hercher, told her about my sister’s death and my family history, and sought her advice. She and a friend/colleague who specializes in cancer counseling agreed that my family history of breast cancer merited testing and was more likely to be associated with a positive test result than the pancreatic cancer: “likelihood of a positive test result there is 10% times 1/2, since there is a 50% chance you share any gene your sister had—but I would say less than that because the cancer occurred over a certain age.”

But she also included a link to an article suggesting that every pancreatic cancer patient should consider genetic testing. Although she had been skeptical about pancreatic cancer screening because there’s no proven way to do it, this article suggested that screening may be effective for both patients and families.

However, she added a caveat: “Understand that our track record with screening for cancer is pretty dismal. Many things that sounded great on paper didn’t result in fewer deaths…but still worth considering.”

She recommended Color Genomics, the same company that Johns Hopkins had suggested, so I felt confident with those dual recommendations from trusted sources. I’m not suggesting they are the only reputable firm, of course.  A friend who works in cancer education for oncologists said she’d heard positive things about Invitae, and I’m sure there are others as well. 

I encourage anyone who is considering this action to do some research and talk with medical sources you trust.

I spoke with my physicians. My primary care physician was skeptical, asking me to think through what I’d do with the results. Both my gynecologist and gastroenterologist thought testing was a good idea in my circumstances and offered to write the medical requests necessary to get the test (more on this shortly). My gynecologist said that although many of her patients who test positive for these mutations opt to have their ovaries removed, if I chose not to do so, I could have half-yearly ultrasounds and Ca-125 blood work, which indicates the presence of cancer.

I also had intense interest in joining a pancreatic cancer surveillance study—for myself and my family, as well as to add to scientific understanding of the disease that took my sister’s life and is occurring with greater frequency.

But I had to think long and hard about my mental mindset. Which way would I worry more—if I had the test and received positive results, or if I didn’t have the test and was left to wonder? Of course, as Hercher had stressed in my interview with her, and we all should keep in mind: testing positive for a cancerous genetic mutation does not necessarily mean an individual will get that cancer, and testing negative doesn’t mean that individual won’t. We’re advancing our knowledge of genetics all the time, but so many other variables may play a role in specific cancers—diet, lifestyle issues, environmental aspects, and plain dumb luck among them. 

I also did some due diligence: checking resources from the American Cancer Society, the U.S. National Library of Medicine, and the National Cancer Institute. The latter carried this caveat about using Direct to Consumer (DTC) genetic tests:

“Even when people have DTC genetic tests for gene variants that are known to be associated with inherited cancer susceptibility syndromes, there are potential risks and drawbacks to the use of DTC testing. For instance, some DTC genetic tests look for variants in the BRCA1 and BRCA2 genes that are associated with Hereditary Breast and Ovarian Cancer Syndrome (HBOC). However, this testing looks only for three specific variants out of the thousands that have been identified. Therefore, someone could have a negative result with this kind of test but still have a harmful BRCA1 or BRCA2 gene variant that was just not identified by that test. In particular, without guidance about the most appropriate genetic testing to do and interpretation of the genetic test results from a knowledgeable health care provider, people may experience unneeded anxiety or false reassurance, or they may make important decisions about medical treatment or care based on incomplete information.”

This is an important reminder that if you opt for inherited cancer genetic testing, you must be cautious about the source you select.

Ultimately, I couldn’t get past the idea that if I didn’t get tested, I wasn’t doing everything I could to protect my daughters. What they did with the information would be their decision, but I felt I needed to get it for them.

I bought the Color Heredity Cancer Test from Amazon for less than $200. It tested for 30 known gene mutations associated with breast, ovarian, pancreatic, stomach, colorectal, and uterine cancers, and melanoma. 

Here’s where the doctor issue arose. My physicians were right that a doctor’s authorization was needed, though that information wasn’t provided on Amazon or on the Color site—until I registered to proceed. Then I was told that I needed my doctor’s approval. Color company representatives were accessible by phone and said that since I didn’t have that approval, one of their doctors would review my personal and family history and the final results at no extra fee.  I also knew a genetic counselor would be available for me to talk with once I received my results.

It was time to act. After reading the directions not to eat, drink (even water), smoke, or chew gum for 30 minutes before providing the saliva sample, I followed the three simple steps as described: 1) Activate your kit online; 2) Provide your saliva sample [tube included, and a clear video available to answer any questions]; 3) Return kit via the US Postal Service. 

I was promised results within four weeks. I then did an amazing thing for a catastrophizer: I put all thoughts of the test and its implications out of my mind and didn’t agonize at all.

Two weeks later, an email arrived informing me that my test results were attached. I felt fortunate that the timetable was earlier than stated: I didn’t have time to anticipate the arrival.

I took a few deep, cleansing breaths, relaxed my tense shoulders, and opened the email.

I had tested negative for all 30 genetic variants. 

I breathed deeply again—this time with considerable relief—read all the disclaimers (which I knew: results meant no guarantees one way or the other), and decided that I’d avail myself of the talk with the genetic counselor just to see whether there was additional information I could learn. 

The woman I spoke with said my findings “didn’t give us much insight.” There was a possibility, she said, that my mother had a genetic mutation that I didn’t inherit—or a gene that hasn’t yet been identified as playing a role in these diseases. 

And she observed that since new genetic information is becoming available all the time, it’s probably a good idea to be tested every two to five years. That recommendation struck me as having a bit of a marketing tinge. 

As far as I can see, I’m done now. I’m grateful for the results, which mean I won’t have to worry about what I might have passed along to my daughters in this regard. And I won’t need extra monitoring myself—or to enter into a pancreatic cancer surveillance program.

Time to remind myself of mindfulness meditation: not to regret the past or worry about the future—just savor the present, each and every minute of it.

How does all of this strike you? Aside from ancestry testing, if you know you have a family history of cancer, have you, would you, will you consider cancer heredity genetic testing for future medical issues?  If so, under what circumstances? (I certainly understand the thinking of those who choose not to know.)  Your insights, opinions, and stories are, as always, most welcome.

Annie