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

 

Wherein I Tumble Into the Weeds Yet Again…

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Well, I didn’t really think I’d be returning to this topic—certainly not so soon—but I’ve learned some things since the first post appeared that I feel are worth sharing.

As I noted previously, despite my ambivalence concerning legalization, I’ve been assuming that it will eventually happen. I still do. A number of you have pointed out the analogy to Prohibition, and we all know how that effort to oppose the public will turned out.

But a New York Times report on the collapse of an effort to legalize marijuana in New Jersey, which was a campaign promise made by the state’s governor, Phil Murphy, and had both his strong backing and statewide public support, points to some opposing arguments that legislators made. (I promise if you stay with me through this, you’ll see that I conclude my findings on a high note. Oops, there I go again with the bad puns.)

From the Times:

“Some lawmakers were unsure about how to tax marijuana sales. Others feared legalization would flood the state’s congested streets and highways with impaired drivers. Some would not be deterred from believing that marijuana was a dangerous menace to public health.”

The Times pointed out that New Jersey lawmakers, and those in the neighboring states of New York and Connecticut, have tried to avoid problems that have occurred in states that have already legalized cannabis. 

Colorado, for example, according to a state-sponsored study published in the March 26, 2019, issue of Annals of Internal Medicine, has seen three times as many cases of people presenting to the emergency room for visits attributable to pot since legalization in 2012. 

The greater number of visits was attributed to edibles—“tales of tourists needing emergency care after gobbling too many marijuana gummies”—leading to vomiting, racing hearts, and psychotic episodes. But the worst problems at a Denver hospital were caused by inhaled marijuana. The study was also prompted by three deaths in Colorado related to edible marijuana products. 

An Associated Press report in the Times observed:

“The analysis confirmed edibles are trouble. Statewide, they made up less than 1 percent of total cannabis sales, measured by THC content [the ingredient that creates the “high”]. Yet 11 percent of ER visits were triggered by edibles.”

There’s no information on safe dosing of these edibles, according to Andre Monte, MD, lead author of the Annals study. An accompanying editorial by Dr. Nora Volkow, the director of the National Institute on Drug Abuse, stressed the need for additional research about marijuana’s benefits and harms and called increased oversight of marijuana manufacturing and labeling an “urgent need.”

Some of the legislative concerns have been financial: in California and Massachusetts, tax revenues from marijuana sales have been disappointing.  My biggest worry, about how to protect teenagers from the drug, has also evoked serious discussions.

I’m going to digress slightly here because a dear friend who’s a long-time mental health professional observed after reading my first post that discussing marijuana is not sufficient without also talking about vaping, which she knows from experiences among acquaintances has led to psychotic breaks in some adolescents. 

If you know any young people who are tempted by or are engaged in this activity, this fact sheet for teens contains information about the dangers of vaping both e-cigarettes and marijuana. Many brands particularly target youth, prompting one report to ask:

“How can a tween, teen, or 20-something looking for inclusion, status, or the next cool thing resist? Given that vaping among high school students in grades 9-12 increased approximately 1286% between 2011 and 2018, it appears they are willing to give vaping a try.”

Some people have suggested to me that if pot were legal, teenagers might be less likely to find it attractive. A 1286% increase in 7 years? If that statistic is even half right, it offers little support for the “if it’s no longer illegal, it loses its allure” argument.

Another important issue in states that have legalized marijuana, notes the Times article,  involves “a burgeoning industry dominated by white corporate interests even as advocates in Hispanic and black communities say their neighborhoods have been most negatively affected by the drug.”

As I noted in my previous post, I am deeply concerned that the social aspect of marijuana legalization be addressed. While I touched on that issue, it clearly needs more exploration. (I mentioned that the records for marijuana arrests in areas where it’s legal continue to show racial disparities, and there’s agreement that better police training is needed.)  If legalization is to take place, it had better be done in a way that rights the wrongs that have been inflicted by the criminal justice system for years.

In this regard, the bill that was voted on in the New Jersey legislature last week was exceptionally strong. According to the ACLU:

“The bill before the Legislature is truly historic. It includes forward-thinking measures to reverse the injustices wrought by the failed drug war.”

  • expedited expungements for cannabis-related criminal records;
  • ability for people to vacate current sentences;
  • non-discrimination for cannabis use;
  • opportunities in the industry for people with criminal records;
  • social justice representatives on the cannabis regulatory board;
  • meaningful provisions for diversity in the industry.

No other state has leaned into the social justice elements of marijuana legalization the way New Jersey is poised to.”

Let’s hope that any future legalization legislation is equally forward-looking and just.

So the concerns I expressed in that first post—about the need for sensible regulation, careful monitoring, greater awareness of potency, focus on teenagers, and emphasis on criminal justice reform—remain intact, even heightened somewhat by the Colorado study. I guess this is a societal experiment in which we’ll bumble along and, I hope, with good sense and good luck, get better at doing things right with time.

Here’s where I end this unplanned revisit on a high note:

A friend alerted me to an article in Scientific American with the optimistic title: “Marijuana May Boost, Rather Than Dull, the Elderly Brain.” (The original study appeared in Nature Medicine; here’s the abstract.)

Before anyone gets too excited, the senior citizens in question were of the genus Mus—specifically, mice. According to Scientific American, 

“…the drug might affect older users very differently than young ones—at least in mice. Instead of impairing learning and memory, as it does in young people, the drug appears to reverse age-related declines in the cognitive performance of elderly mice.”

Scientists not involved in the study who found it intriguing cautioned, of course, that additional research is needed before assuming the findings would be relevant to aging humans. But those who did the study noticed that in the treated elderly mice, the neurons in the hippocampus (the part of the brain essential for memory and learning) had developed more of what’s called synaptic spines, by which neurons communicate with each other. 

The Scientific American author pointed out that the researchers were even more struck by the dramatic difference in the hippocampus of the THC-treated mice as compared with the elderly, untreated mice. Andreas Zimmer from University of Bonn, Germany, the lead researcher, stated:

 ‘That is something we absolutely did not expect: the old animals [that received] THC looked most similar to the young untreated control mice.” 

The hypothesis is that the THC and possibly other components in cannabinoids act similarly to the brain’s naturally occurring endocannabinoids, which are directly associated with the brain’s neural activity and appear to decline with age. Thus, externally introduced cannabinoids could, theoretically, reverse that process. 

One clinical researcher who wasn’t associated with the study, Mark Ware at McGill University, observed:

“To anyone who studies the endocannabinoid system, the findings are not necessarily surprising, because the system has homeostatic properties everywhere we look.” In other words, it adjusts to changes in order to maintain internal stability.

That can explain the variations we see, points out the Scientific American author. 

“For example, a little marijuana may alleviate anxiety, but too much can bring on paranoid delusions. Likewise, cannabis can spark an appetite in cancer patients but in other people may produce nausea. Thus, the detrimental effects seen in young brains, in which cannabinoids are already plentiful, may turn out to be beneficial in older brains that have a dearth of them.”

Of course, this is just one study, but it’s quite fascinating, isn’t it? While I’m still worrying about teenage abuse of the substance, and irresponsible drivers, and lack of information about potency that’s sending people to the ER for glomming down too many gummies (I wonder how many gummies it took…), I find myself eagerly awaiting further research on the effects of cannabis on the aging brain.

I received several new clearly weed-related followers after my first post on this topic, and I wondered why they found me a kindred spirit when I was so filled with skepticism and concerns.  Then a friend reminded me of my reverie about cherry tomatoes after my one-and-only experience with pot decades ago.

Another friend had commented that he had been pro-legalization, but my first post made him rethink his position. But I told him about this study. After hearing about it, I now have images of happy elderly folk in all sorts of places, reveling in their carefully regulated dosages of brownies, gummy bears, and the like—followed by a chaser of cherry tomatoes unlike any they’ve ever experienced before.

And in my fantasy view of memory nirvana, all who so engage will be able to promptly retrieve the first and last names of everyone they’ve ever met; the actors, titles, and stories of all those wonderful movies; the plays, players, and scores of sports events they viewed with pleasure decades ago; and…well, you get the picture.

…And Mr. Google will simply have to find another line of work.

As always, I welcome your thoughts, opinions, and stories in the comment box below—as well as your feedback in the form of stars (from the one on the left for “awful” to the one on the right for “excellent”) and the “likes” from WordPress folks.  Thanks so much.

Annie

Wanna Hear About My Colonoscopy?

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Image courtesy of Flickr.com

Probably not. If you’re reading this, you are either a) one of my very loyal readers, in which case I am most grateful for your perseverance; b) interested in all things medical, no matter how icky;  c) a catastrophizer like me, who always goes to the darkest possibility in terms of health; or d) just plain curious to find out what this strange woman is up to. 

Why do I want to tell you about my colonoscopy? March is Colorectal Cancer Awareness Month, so I figure if Katie Couric could have had a colonoscopy live on the Today Show in 2000 (after her husband died of colon cancer in 1998), it doesn’t take much courage to write this post for my blog. She also accompanied Jimmy Kimmel to his first colonoscopy, and you can find that amusing and instructive episode in this YouTube video. 

The purpose, of course, is to encourage screening among those who either don’t think about it or just can’t bring themselves to do it. Colonoscopy screening is one of the indisputable ways to save lives. But even if you have one regularly, I hope you’ll continue to read this because I’ve learned some important information that I don’t think is widely known, and perhaps you can spread the word to others. As Jane E. Brody, who writes the Personal Health column in The New York Times, stated:

“Although I usually refrain from columns linked to national health observances, I believe that Colorectal Cancer Awareness Month, in March, is too important to ignore. There are simply too many people who are still getting and dying from this preventable disease because they failed to get screening for it, including people with no excuse like ignorance, lack of health insurance, or poor access to medical services.”

I am close to two people who have lost loved ones to colon cancer in their early 50s. One was a beloved childhood friend; the other a treasured younger brother. Although any young death is a tragedy, both of these people were terrific, warm, loving individuals who left grieving spouses and children—and whose deaths were totally preventable. 

In addition, I think about the vibrant young woman, mother of two, whom I met when I took a mindfulness-based stress reduction course last year. She had had colon cancer once, had a recurrence, but was then doing well, she said. Her purpose in taking the course was to find a way to ease her anxiety while she awaited subsequent test results. She wept briefly as she described her circumstances, regained her composure, and for the rest of the eight-week course, was a delightful, wry person who dealt silently with what must have been a huge psychological burden. I think of her fondly, hoping her health is stable.

Here’s the important point that I’m not sure is well known: Last year, the American Cancer Society (ACS) lowered the proposed age for first screening (for people with no known risk factors or family history) from 50 to 45. That’s because so many younger people have been struck with the disease. 

And 45 probably isn’t low enough. In contrast to a drop in the overall death rate, attributable to greater detection and removal of precancerous polyps, an ACS study found that since the 1980s, colorectal cancer rates have increased by 1.0% to 2.4% each year in those aged 20-39, and since the 1990s, by 0.5% to 1.3% among those aged 40-55. Oncologists are seeing the disease even in adolescents. Those statistics should make us all sit up and take notice. 

It’s not clear why these rates are increasing, writes Patricio Polanco, MD, of the UTSouthwestern Medical Center. He and others say the factors considered include genetic mutations, low fiber diet, obesity, smoking, heavy drinking, and ulcerative colitis.

But conflicting conclusions emerge from other reputable sources. In a 2018 discussion among experts in an  OncLive Peer Exchange,  Michael Morse, MD, of Duke University Hospital said the data suggest neither obesity nor mutational differences are significant. He suggests “something environmental or habit-based…but until we can collect enough data from a large enough number of people, I just don’t see how we’re going to tease it out.” 

This is clearly a societal issue that requires greater awareness on the part of the public. Primary care physicians may need additional education as well, experts have suggested. As there’s no screening for those under age 45, younger people with questionable symptoms may have no time to waste, as noted below.

In my case, as an adherent patient and catastrophizer, there was no way I’d procrastinate in having the procedure right when I was told I should:  at age 50. That first one was fine, but the next one showed a few polyps, as did the following one. And since one polyp was precancerous, I was advised to have another colonoscopy after only three years. I’ve never had root canal, so I can’t use that comparison, but for the uninitiated, the experience is neither a walk in the park nor the worst thing imaginable.

The instructions are that three days before, one should eat only cooked fruits and vegetables. That eliminates about 2/3 of my diet, so right there, I’m at a disadvantage. No blueberries in my morning cereal; no huge salad with dinner, containing five or six of my favorite veggies; not even a small banana. For some reason, a line from Carl Reiner and Mel Brooks’ “2000-Year-Old Man” came to mind: “I’d rather eat a rotten nectarine than a fine plum.” I would have been happy with either—or both.

On the Day-Before-the-Day, I started the liquid diet. Fantastic options there: broth, apple juice, Jello (but nothing red, the only flavors I like), soda, coffee (neither of which I drink), sherbet (but not with milk and also not red, precluding my favorite raspberry). So using a wellspring of creativity, I came up with my day’s menu:

Breakfast: mug of chicken broth, glass of apple juice

Lunch: mug of chicken broth, glass of apple juice

Dinner: mug of chicken broth, glass of apple juice

Dinner was at 3 pm, because at 4 it was time to begin THE PREP.

As many of you may know from experience, the prep involves imbibing a truly noxious-tasting substance—a combo of ingredients designed to flush the system, in my case with a soupçon of lemon-lime flavoring to tickle the palate—all mixed with luke-warm water and then refrigerated, allegedly to make it more palatable.  

Suffice it to say, I got a lot of exercise over the next several hours running back and forth until my system was “clean as a whistle.” That’s all the scatology I’m going to inflict upon you.

On The Day, fortunately, my appointment was at 7:30 am. All the medical history review and pre-procedure steps went smoothly.

Then, with the anesthesia dripping into my vein and oxygen in my nose, I drifted off. What was probably 10 minutes later, I was awake. (The electronic schedule board in the waiting room had shown that my gastro had already done 4 of these before my arrival, and had 2 more in the works before he got to me.) I lay there for a few minutes, chose my post-procedure food and drink—cranberry juice and a blueberry muffin—finished them off in a nanosecond, and that was that.

The news was better than the last time: one small polyp, the gastro informed me—definitely not cancerous; he could tell that clearly. Tonight, just minutes before publishing this post, I got a call from the gastro telling me the biopsy report showed that the polyp wasn’t even precancerous. And because there was only one small one, I now have a five-year respite from this procedure, rather than only three years. So hooray for that!

I am telling you all this in the hope that it will be beneficial. In terms of cancer deaths in the US, colorectal cancers come in second; this year, according to Jane Brody, 51,000 people are expected to die of the disease. 

In addition to colonoscopy, there are less complex tests available; see Jane Brody’s column for a description of them. Colonoscopy, though, is considered the best test, as it can both detect cancer and remove polyps that may well develop into full-blown cancer in time.

The fact that an increasing number of those cancer deaths occur in people in their 20s, 30s, or 40s weighs heavily on me. Polanco, of UT Southwestern Medical Center, says it’s important for young people to be aware of the symptoms: abdominal pain, blood in the stool, constipation, diarrhea, decreased appetite, and weight loss, “and never assume they’re too young to get colorectal cancer.” 

Younger people tend to attribute their symptoms to something less serious, he writes, such as hemorrhoids or irritable bowel syndrome, and therefore don’t seek medical help until they have late-stage disease. Though I don’t want to generate panic on this issue, it is clear that changed circumstances require a new mindset to better protect younger adults. And the rest of us need to do the prudent thing to protect ourselves as well.

As always, I welcome your opinions, insights, stories, additional sources. And thank you for staying with me to the end of a post on a topic that I really didn’t want to write about at all, but felt compelled to do so.

Annie

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Then, a 20% Chance; Now…

“The purpose of life is to live it, to taste experience to the utmost, to reach out eagerly and without fear for newer and richer experience.”

   ——–Eleanor Roosevelt

A mini-celebratory brunch is in order: the doctor reported both heart and aorta are sound.

“We’ll take you out,” we say.

“You’ll come here,” she insists. “The best bagels, fresh eggs, delicious fruit, plus quiet and lots of room.”

We relent.

Four years ago, the collapse—after a symphony hall concert.

She attended concerts often—multiple subscriptions, with friends and alone. And the art galleries, the library lectures, the thrice-weekly swims, the scheduled trip to Macchu Picchu…

That evening, she was alone. 

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Ambulance rides to three separate hospitals. Number one: ill-prepared for such an emergency. Number two: heart attack—quick; give her blood thinner. But then the correct diagnosis: a ruptured aorta, meaning the blood thinner was a clearly awful decision. “Won’t operate,” said the head doc. “Too old; too risky.”

But three’s the charm. “Bring her here,” said the vibrant young female surgeon, expert in repairing damaged hearts and valves, at a larger affiliated hospital.

Afternoon next day: We—in-laws and daughters—met with the surgeon, a tall, slender, soft-spoken woman whose brown eyes were at once warm and riveting. She minced no words.

“Without surgery, she will soon die.

“With it, a 50% chance she’ll die during surgery or within the next three days.

“A 30% chance she’ll survive the surgery but then suffer a stroke or other event that would seriously impair her functioning and quality of life.

“There’s a 20% chance she’ll walk out of the hospital and resume her life.”

What would you do?

“What do you think?” we asked the surgeon, who also happened to be kind and empathetic.

“She’s come through all this time, and two moves by ambulance, and her color’s still good,” the surgeon said. “She’s been leading an active life until now—I think it’s worth a try.”

When asked about the prior surgeon’s reluctance to operate, she said: “The patient is 81, with a ruptured aorta—clearly in extremis. It was not surprising he [the surgeon] wanted to head for the hills. But the family members come in and say she swims 3 times a week, is very independent, very functional. That sways away from ‘let the poor old lady go…’”

Shortly after 9 pm, nearly a full day after the collapse, the surgeon came to see us, her lovely face looking tired but illuminated. “It went very well,” she said. “We repaired the aorta, the aortic valve, and the mitral valve.”  The patient, she said, “is a picture: most people after surgery are pale and puffy. She looks like herself.”

Later, she acknowledged: “I had major doubts, but one of the great benefits of a large hospital system like this was that I spoke with my chairman and another specialist in aneurism repair. I said, ‘I know what you’re going to say, but…’ Both felt it was reasonable to operate.”

Three days after surgery, when the patient was speaking and demonstrating an understanding of commands, the surgeon pronounced her, in highly technical terms, “a miracle.”

When we first saw her, she greeted us with a big smile. But when the nurse told her she was about to swab her mouth and make her more comfortable, the former school principal uncharacteristically replied: “Bull s—t!” The surgeon expressed delight: “Profanity and criticizing breakfast are two excellent prognostications,” she said wryly.

“This was a Type A dissection,” she explained to me. “The pipe has burst. You sew in a piece of material, being careful not to leave gaps and not to miss a stitch. It’s like sewing a sleeve into a jacket. It’s not difficult, but you have to be meticulous. If you miss one stitch, you spend a lot of time regretting.”

As the patient prepared to leave for a rehab center at the end of her hospital stay, the surgeon said she expected her to resume her life and live for a number of years more. The surgeon has already been proven right. 

That brings us to today’s brunch, served on china—no paper plates. images-17A nicely arranged platter of cut-up fruit sprinkled with almonds forms an edible centerpiece. After brunch, I have to fight her to let me do the dishes.

She tells us about the concert she’d been to the night before, and the gallery visit the day before that. Her eyes are bright, her face unlined and attractive without a touch of makeup. Her mind totally sharp—despite a stroke some months after her surgery, which minimally damaged her vision in one eye.

She explains—without complaint—that she needs to rest a lot more than she once did. And she’s more concerned about walking about the city in the winter, fearing a fall that might hurt her fragile back (she’s had several fractured vertebrae). “I feel somewhat isolated,” she says.

She can’t keep up with the group of women nearby who meet daily to pursue one cultural event after another. One, in her 90s, lives on the 13th floor of her building, and walks up and down the stairs twice a day in addition to her other activities. I am exhausted just hearing about her.

She talks about my blog, describing the posts she most enjoys. She asks me how I feel about it. “I love it,” I tell her. “It’s so freeing to be able to write about anything I choose, and I enjoy the dialogue with my readers. It’s a source of great satisfaction for me.”

“That’s the way I feel about this,” she says. And she points out her new response to that sense of isolation. Once an art teacher, she has painted and sculpted—both before moving to special ed, then becoming the principal of two schools for autistic children—and since retiring. But those art forms require space and effort expended to clean up. Now, in her 86th year, she has found the ideal medium for her present circumstances: paper collages. 

She points to her “studio”: a corner of her dining area holding scissors, Elmer’s glue, pieces of cardboard and styrofoam for backing.

Suddenly, we see the works, positioned throughout her apartment. Each one is a visual delight—demonstrating a keen esthetic sense and a creative mind channeling itself in a wholly new direction. 

A large one features Eleanor Roosevelt, the Statue of Liberty—its torch the highest point on the collage—and other images and references to that era: Social Security, the UN, the WPA.

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Another—also large—is a replica of her favorite concert hall, pieced together from performance programs and advertisements. One depicting penguins and divers in the ocean is a work in progress. And on and on.

Her sources of inspiration? She combs through discarded magazines and the detritus of junk mail, finding things that strike her just the right way. That sea bird that hovers over one work? “He just caught my eye and spoke to me,” she says.

And so she meticulously pieces together from multiple sources all kinds of stuff, building new and larger stories than the ones she’s extracted—at the same time enlarging her world and, as we look at these works from all angles—ours as well.

I am in awe of this remarkable woman, who spends almost no time complaining and a great deal of time creating. How many of us will move beyond our limitations and find new ways to reach within ourselves for personal satisfaction and growth—regardless of our ages?

As I think about the doctor who refused to operate on her four years ago because she was “too old” and it was “too risky,” I find myself pondering those nearly impossible decisions about how much to do when an older person is “in extremis.” 

A 20% chance didn’t seem like much, but we in the family are forever grateful to the wise surgeon who felt it was worth the risk, guided us accordingly, and then used her brilliant skills to make that decision the best one.

 

As always, I welcome your thoughts, experiences, stories, and in this case, philosophy about how to confront these difficult decisions.

Annie

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Getting Into the Weeds of the Marijuana Debate

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First, sorry about that title; I couldn’t help myself.

When I was in grad school, a sheltered 21-year-old living on her own in the Big City for the first time, I had a friend I’ll call Bo. An English major like me, Bo was a wildly creative character who scavenged through garbage cans and transformed odd stuff he’d found into some very interesting works of art.

He was also eager to share some of the things he regarded as life’s gifts with his friends. And so one day he offered me—a non-smoker, rule-abider, and rather fastidious sort—a dirty-looking piece of hemp. Despite myself, perhaps swept up by his enthusiasm, I took a few puffs. I coughed several times and waited for the mind-altering experience to sweep across me. Nothing.

Then Bo said, “Close your eyes and open your mouth.” Again despite myself, I did so. I bit down on what I realized were a couple of cherry tomatoes. But these weren’t just cherry tomatoes. They were the purveyors of what felt like thousands of tiny, glorious seeds that danced through my mouth, spurting forth and swirling among the juicy streams, evoking delight on a sensory journey I can still vividly recall.

That was my one and only experience with pot. I didn’t like smoking or the smoke, and I returned to my law-abiding self. Had I even had enough of the drug to create that euphoria, or was it a pot-cebo effect attributable to the circumstances and my friend’s delight? I’m not sure, but I think it was due to that puff, the magic drag-in. (It appears even the remembrance is making me giddy; could bad puns be a side effect of cannabis use?)

In fact, my admittedly blog-sized study of this very complex topic has led me to believe that the legalization of marijuana is no laughing matter. For one thing, the substance today is not, as some have said, “your father’s marijuana.” It’s also not my friend Bo’s. It’s far more potent, and the potency is one factor that can get people into a heap of trouble. 

“Today’s marijuana plants are grown differently than in the past and can contain two to three times more tetrahydrocannabinol (THC), the ingredient that makes people high,” states the American Academy of Child and Adolescent Psychiatry (AACAP). “The ingredient of the marijuana plant thought to have most medical benefits, cannabidiol (CBD), has not increased and remains at about 1%.”

Marijuana, I’ve learned, is a complicated substance, containing over 100 distinct chemicals. In addition to THC and CBD, it’s comprised of other elements that also have specific effects on the central nervous system. According to an article in the Annual Review of Medicine, 

“The concentration of these compounds can vary substantially, making it difficult to characterize the specific positive or negative health effects of marijuana, especially in uncontrolled and epidemiological studies.”

As this movement toward legalization seems to be gaining ground, I’m extremely conflicted about its implications. Though I lean toward the civil libertarian approach to life, I have worries about whether we as a society have sufficient data at this point to know the safest and wisest ways to proceed. 

I’ve concluded that it’s irrelevant for me to decide whether or not I support legalization because I assume it’s inevitable: 10 states and the District of Columbia have already passed laws legalizing recreational marijuana, and 33 states have legalized medical marijuana. Thus, I’m focused here simply on raising some of the issues that give me pause.

There’s no doubt the financial incentive is strong. When John Boehner, former Republican speaker of the House, spends his time leading events to woo cannabis investors, you can bet there’s gold in them thar weeds.Unknown-12

 

According to a leading analyst, the current US market opportunity is between $40 and $50 billion, and may increase by 2030 to $80 billion if there’s national availability.

Whether that’s enough to snatch the market away from the drug cartels is problematic.

Opponents of legalization argue that there’s no way these people will pack up their bags; they’ll simply focus on building up their clientele for even more dangerous drugs. There’s also concern about synthetic marijuana, which can be considerably worse than the natural variety.

The emphasis on medical use of marijuana, which I had thought was an easy issue before I began my research, is considerably less so. The authors of the study cited above point out that in many cases these substances have been legalized by voters in state elections or by state legislators, bypassing the scrutiny of the traditional FDA testing/approval process. 

These researchers said (in 2015) that “the evidence for the legitimate medical use of marijuana or cannabinoids is limited to a few indications, notably HIV/AIDS cachexia [wasting syndrome], nausea/vomiting related to chemotherapy, neuropathic pain, and spasticity in multiple sclerosis,” with other potential uses showing promise but lacking robust data.

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Web MD added to those conditions Alzheimer’s, Crohn’s disease, eating disorders, epilepsy, glaucoma, mental health conditions (eg, schizophrenia and PTSD), muscle spasms, and pain.

That’s a pretty impressive list that could mean relief for many people, but the issues apparently aren’t so clear. James Beck, PhD, the Chief Scientific Officer of the Parkinson’s Foundation, said in a brief video called “Neuro Talks” that use of marijuana might help relieve anxiety, appetite loss, and pain in Parkinson’s patients, but the increased potency might mean it would exacerbate slowness of thinking, cognition, balance, and hallucinations. (For the video, click on the James Beck hyperlink above.)

Beck pointed out that the Parkinson’s Foundation was committed to research to help identify the different formulations, potencies, and components of cannabinoids and how they might affect patients at various stages of illness.

One of my major concerns involves the use of marijuana in young people, whose brains are apparently more greatly affected than those of adults. AACAP points out that many teenagers believe that marijuana is safer than alcohol or other drugs, possibly thinking it’s natural, non-addictive, or won’t affect their thought processes or grades.

But AACAP warns parents about the various difficulties arising from short-term use (such as problems with memory and concentration, increased aggression, car accidents, increased risk of psychosis); regular use (leading to Cannabis Use Disorder, involving cravings, unintentional heavier use, and interference with other activities); and long-term use (creating breathing problems, lower intelligence, and mental health problems, including risk of suicide). That’s a partial list.

The authors of the previously cited study say:

“Early and greater quantity of marijuana use results in greater cognitive deficits. This is particularly true for adolescents who begin smoking marijuana in their early teens.”

They refer to a finding that those who began between 14 and 22 years old and stopped by age 22 had significantly greater cognitive deficits at age 27 than those who’d never used marijuana.

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How can we protect our young people from the potential harm? Surely parents and schools who warn against drug and alcohol abuse must be similarly open about marijuana, since young people may find its new legality confusing.

One positive aspect of legalization is that it may help address the clear racial disparities in this issue. In a 2012 NPR Intelligence Squared debate on the legalization of drugs,  Paul Butler, a former prosecutor and current law professor at Georgetown whose expertise is in criminal law, especially involving race, advocated for legalization. 

Butler noted that, growing up in all-black neighborhoods, he’d had no contact with marijuana. His introduction came as an undergraduate at Yale College and at Harvard Law School (!).

In the war on drugs, he observed, about 90% of those arrested have been black, though people of color make up only 12% of drug users. Legalization, he said, “will stop the counterproductive practice of treating kids like seasoned criminals.”

But that’s not happening yet. According to Vox, the racial disparity in arrests continues, even in states that have legalized marijuana.

The Colorado Department of Public Safety reported in 2016, four years after Colorado legalized the drug, that the drop in arrests hadn’t occurred across the board equally.

“The decrease in the number of marijuana arrests by race is the greatest for White arrestees (-51%) compared to Hispanics (-33%) and African-Americans (-25%).”

To counteract these disparities, activists say that “legalization must include a change in how drug laws are enforced by police officers,” reports Vox. This issue will be addressed as part of the widening scrutiny of racial justice and policing.

[For more on that topic, see my earlier post, “How Do We Talk About Race in America? (Part 2) Meet Doug Glanville.”]

And an important driving factor in this effort, Vox observes, will be the activism of black women.

I would like to think that the arguments of proponents of legalization will actually hprevail: that there will be stricter regulation leading to safer marijuana; that legal resources will be freed up to be deployed where they’re really needed, and people can be spared unnecessary police records and damaging prison time; and that we may even see a drop in adolescents’ use of marijuana, as well as harder drugs. That would be wonderful. 

But we simply don’t know. We’re at the beginning of a complicated path as we increase access to marijuana. We live in an age of anxiety, and it’s not surprising that people are eager for substances that help them relax.

And, in my one, extremely brief encounter, I certainly got a hint of the pleasure that cannabis can provide.

I don’t worry about adults’ feeling comfortable with the occasional weed, freed from concern that they may soon find themselves involved in the criminal justice system.

I just hope that we as a society are up to the vigilance, research, and regulations needed to help us ease our way into this new era, ensuring that marijuana users have access to carefully regulated products so that excessive potency, bad processing, or dangerous synthetics doesn’t take them by surprise and/or damage them.

I hope that all users are as responsible and aware on the road as they would be after having alcohol—surrendering their keys to a designated driver before the high becomes “too high.”

And I hope, especially, that everyone protects and educates the children.

This is a controversial topic, and I’m sure many of you have strong opinions. Please let me know your thoughts, stories, insights, and other resources in the comments box below. Many thanks.

Annie

Navigating “The Wild West” Marketplace of Consumer Genetic Testing–and Other Needed Information About Our DNA

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In an article in The New York Times Sunday Review, genetics counselor Laura Hercher described a man named Matthew Fender, who—after searching for heredity data through 23andMe—had placed his genetic test results into Promethease, a DNA search engine that probes such data for variants cited in the medical literature. 

Fender had sought to learn his risk for developing a pulmonary embolism, the condition that had killed his sister, a seemingly healthy young woman of 23. The report didn’t mention that, but it did provide the alarming news that he carried a mutation (PSEN1) strongly associated with early onset Alzheimer’s, as well as two copies of a gene variant (ApoE4) that indicates greatly increased chances of developing late-onset Alzheimer’s.

After getting no satisfactory guidance from his primary care doctor and other professionals, Fender checked out a competing genetics company, Ancestry DNA,  to see what his results there would say about the PSEN1 variant. They said nothing. He then persuaded his doctor to order the test, which proved negative.

End of story for Fender, although he said the experience led him to improve his diet and to consider using his technological skills to develop an app to assist people with dementia through voice-activated devices such as Siri and Alexa.

It’s worth noting that both companies claimed their tests were 99.9% accurate. Yet a 23andMe representative told Hercher that “a 99.9% accuracy can still mean errors.” And apparently, not every variant in their chip is even validated for 99.9% accuracy.

“The direct-to-consumer genetic testing marketplace is a regulatory Wild West,” wrote Hercher, who is the director of research at the Sarah Lawrence College Graduate Program in Human Genetics.

She’s also the host of an informative and entertaining podcast, “The Beagle Has Landed,” (named after Charles Darwin’s ship—not Charles Schulz’s Snoopy), designed for both professionals and “curious patients,” according to its introductory press release. One of her interviewees was Matt Fender.

Hercher explained that FDA Commissioner Scott Gottlieb announced in November a new regulatory approach that will allow companies like 23andMe to market some tests to determine health risks without premarket review. That change, Hercher observes, “is expected to usher in a rapid expansion of the consumer genetics industry.”

That means we consumers will need to better prepare ourselves to function in this new ”Wild West” by getting a better education on the important topic of genetics and the role it plays in our health—even as the field itself is changing all the time.

With that backdrop,  I spoke with Hercher to elicit her opinions on how to view all these genetic data at this stage. 

First, to her, the quest for information about one’s heritage, which she calls the “ancestry craze,” is a “mixed bag.” The positives she underscores are that people enjoy and are intrigued by learning about their forebears, and the process brings science and genetics into people’s lives.

But when people ask her if these quests yield legitimate information, she responds: “It’s accurate-ish. People think of this as their genealogy, but once you get past Mom and Dad, there’s a lot of randomness—you could inherit something important, or not.”

“People like to tell a story they can understand, a narrative that can explain why people turned out certain ways. Genetics also tells a story, but the risk we run is that when hearing it, we put aside other stories—involving culture and heritage, for example.  It’s very hard to weave it all together.”

If we’re interested in our predecessors’ story, then their story is ours, she notes, and that’s valuable to us. “Genes are a part of that, but not all of it. Even among siblings: one person could have 34% Southern European heritage, while his brother registered 15%. Would that make sense? No. The tests don’t gather with that level of precision.”

Hercher analogizes a swimming pool, with some blue substance for African ancestry, red for Chinese, etc. “The testers scoop a sampling from a spot of genomes into a net, and they’ll get red, green, yellow,” she says.  “Different tests reach down and get the same mix, but it’s not identical.”

To Hercher, the ancestry tests also tend to encourage a kind of tribal thinking and ignore the overriding message: 99% of our DNA identifies us as human and is genetically shared among us. “The DNA story is our commonality as a people—as well as with other living things. I wish these companies presented the data in a way that made that clear.”

And this commonality has great implications for the subject of race. “No quality geneticist will tell you that the concept of race does a good job of describing our shared genetic ancestry. Race isn’t a scientific grouping; it’s defined culturally. There’s more mixture within groups than between groups.” In a point that is probably obvious to all but the most rabid white supremacists, she says: “Racial purity is a myth.”

Those in the genetics field are disturbed by the current efforts to bring back eugenics, or “scientific racism,” which was once believed even by serious scientists who felt they could, by controlled breeding, create an increase in desirable heritable traits and a decrease in undesirable ones, thereby improving the human race. 

The concept was easily manipulated and became discredited after its use by the Nazis in Germany. “Now all these things are widely talked about,” Hercher laments. “The white nationalist movement has adopted the language of hate ideology and put a scientific gloss on it.”

This is the background for the hot water that Massachusetts Senator Elizabeth Warren has gotten herself into by taking a DNA test to prove her Native American ancestry. With this action, critics say, the possible 2020 Presidential candidate has played into the concept of “racial science”–validating the alleged link between blood and race, which The New York Times calls “a bedrock principle for white supremacists and others who believe in racial hierarchies.”

That’s not, I trust, the way most of us view genetics. We may remember how we were introduced to the subject in school: with Gregor Mendel and the 29,000 pea plants he cultivated that formed the foundation of the field. But even among the experts, “we never knew how complicated heredity is,” Hercher says. Single gene inheritance, such as blood type, is fairly straightforward and rare—as are diseases attributed to a single gene, the so-called “Mendelian diseases,” which include sickle cell disease, as well as cystic fibrosis, Huntington disease, muscular dystrophy, and a few others. 

Most of genetics, Hercher stresses, is more multi-layered. Heredity, and the traits and illnesses that are in our DNA, involve the interaction of genes with both our external environment and the internal environment comprised of our hormones, metabolism, and other factors. So when we find out we have certain genes—and their variants and mutations—there’s no straight line to determining how our bodies will deal with their existence.

One important issue that stirs debates among geneticists involves ApoE4—the gene that denotes a higher risk for Alzheimer’s and carries both individual and societal implications—for care and economics—as our population ages. Approximately 25% of Caucasians carry this gene, but Hercher points out that an individual at somewhat increased risk may not develop the disease; while someone with decreased risk may still get it. 

And currently, without a cure, that raises questions. “There’s a faction in the genetics counseling community that says we have no business giving out that information,” says Hercher. Indeed, when Matt Fender initially sought guidance from his primary care doctor, Hercher reported in her Times article, the doctor responded: “What the heck do we do about it, once we know, other than create high anxiety?” However, says Hercher, “a growing faction says that whether or not to provide the information is not really our call.” In other words, it’s the patient’s decision.

So if we’re deciding to search out our ancestry–or to be tested for a possible disease– the important thing for us, the consumer/patient, is to seek education before we even consider being tested. 

How will we regard the potential results? Do we need the information to inform our choices about health decisions that must be made—before a pregnancy, for example, or to assess our odds of developing certain cancers?

On such matters, Hercher stresses, both factions in the genetics counseling community agree: if the information is to be given, good counseling should be involved to help patients think through the implications—and then to support them once they’ve decided whether or not to act on the findings.

What do you think? Have you had any experiences you’d like to share? Please enter them in the Comment box near the bottom of this post.

Annie

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