On Cancer

A creative writing teacher told our class many years ago that we should never write about cancer in fiction.  Cancer was cliched, and it conveyed tragedy.  The reader's assumptions and stereotypes would detract from the story.

What will I do, then, if I choose to tell the story of my life through the lens of fiction?

My grandmother died from breast cancer.  My father died from bladder cancer.  My aunt died from endometrial cancer.  My sister-in-law died from brain cancer.  My cousin's son died from bone cancer.  My mother has glandular cancer, my cousin has liver cancer, and I've had three cancers.

As explained by the American Cancer Society, the word cancer comes from the Latin for crab--an unfortunate image that most likely arose "because the finger-like spreading projections from a cancer called to mind the shape of a crab."  In contrast, the finger-like projections from the Cancer constellation are quite lovely:

The faintest of all the constellations in the zodiac, Cancer is hard to find.  

Our writing teacher no doubt said something like this, which I found from the Institute for Writers: "Often writers imbue their ailing characters with a disease to such an extent that they seem like merely an embodiment of the illness . . . It makes for uninteresting two-dimensional characters.  (Insert yawn here.)"

Cancer has become my companion over the years, not a friend of course, but a familiar figure.  I know how it moves and how it acts.  I know not to be surprised.  And if I ever write about the people I've known with cancer, they won't be cliched or two-dimensional.  You won't have to yawn.  For their cancer has never defined them.  Rather, they've defied it.  Their personalities, quirks, and talents have far outlived this disease.  

The crab can scuttle all it wants, sideways hither and yon, but I'll take the image in the sky--whether I can see it or not.

Education 101

Saturday's editorial in The New York Times, "Reopening Schools Will Be a Huge Undertaking. It Must Be Done," elicited almost 2,000 largely oppositional comments.  In it, the editorial staff argued that public schools should open this fall with unprecedented federal funding and with imaginative use of outdoor space.  As one reader noted, the word "teachers" appeared only once, in the second-to-last paragraph.

This says it all to me and, at the same time, doesn't surprise me.  "What do our teachers think about re-opening?" seems like an obvious question.  Yet for too long our society has discounted the role and expertise of its teachers.  We don't pay them enough, we don't support them enough, and we don't consult them enough. . . but we ask them to solve society's problems that society fails to solve.

Consider for starters poverty, hunger, racial disparities, and economic inequality.  We expect our teachers to overcome these challenges and ensure that all of their students achieve at a defined level-- despite low salaries, marginal benefits, and often poor working conditions.   At a most basic level, the schools that my kids attended lacked soap in the bathroom dispensers, doors on stalls, sufficient cleaning supplies, working windows, and mold- and asbestos-free classrooms.  Even when there's no coronavirus circulating, many Durham schools are neither safe nor clean.

Just as the pandemic has exposed the failure of public health and elder care in the United States, so it exposes public education.  How did we get to the point where teachers buy their own paper?  Need subsidized housing?  Work second jobs?  Crowdfund surgeries and new equipment?  Why do we tolerate dilapidated buildings and aging school buses?  Why do we short-change our children and their teachers?

It's past time to ask these questions.  Covid-19 will eventually resolve, but the ills that plague our schools will not unless we demand something different.  As fellow citizens protest policing and racism, let's add public education to the conversation.  It's related, after all, and it serves our future and our national treasure: our children.

Another Wish List

Last week I posted a list of my personal wishes during this time of coronavirus.  In light of the murder of George Floyd last Monday, I post a new list.  Here's what I wish for America:

1. A dinner table where everyone is fed.

2. A neighborhood where everyone can jog.

3. A school where everyone is educated.

4. A hospital where everyone has the same chance.

5. A police department where everyone is safe.

6.  A government that works for everyone.

7.  A people that confronts its racist past.

8. A nation that's willing to force change.

9. A United States that gets it: "Injustice anywhere is a threat to justice everywhere." - Martin Luther King, Jr.

10. An America that redefines "We, the People," to include everyone.

Rugged Individualists

One of the hallmarks of America is our mythical pride in individualism.  We tout so-called "self-made millionaires" and those who "pull themselves up by their bootstraps."  We profess freedoms at the expense of others and consider ourselves "exceptional."

Interestingly enough, Herbert Hoover cited America's "rugged individualism" in his closing campaign speech in 1928.  By contrasting American principles with European "doctrines of paternalism and state socialism," he heralded the American way of self-reliance and limited government, portending his disastrous handling of the Great Depression.  His failure to authorize the federal government to help ordinary Americans made a terrible situation worse.

So what happens, almost 100 years later, when another crisis collides with American individualism, a new disease that's communal in nature?  A disease that puts my life in the hands of others, even those I don't know and those who choose not to wash their hands or wear masks or distance themselves.

We get protest signs like these:

"Give me liberty or give me COVID-19"
"Sacrifice the weak"
"Tyranny is Spreading Faster than the China Virus"

And we get behavior like these:

Stormed state capitols
Heckled health care workers
Gun-toting intimidators

To make matters worse, our president encourages these attitudes, inciting anger and protests.  He clearly values the rights of the individual--as he pushes states to re-open--over the collective health of Americans.  In tweeting states to "LIBERATE," he implicitly instructs Americans to disregard their responsibility to each other and look out only for themselves.  It's a selfish way forward.

Donald Trump, like Herbert Hoover, gets it wrong.  Echoing his predecessor who vetoed major aid legislation in 1930 by saying it would "bring far more distress than it will cure," Trump said in March that "we cannot let the cure be worse than the problem itself."  For in the case of COVID-19 the cure means a collective response, a shared responsibility for each other's lives.

Such responsibility confounds Donald Trump.  I'm not sure he knows what it means.  But without it, we lose people unnecessarily.  Fellow Americans.  Human lives. 

What could be more important?

Gastrolinguistics

When I recently had an episode of what seemed like acid reflux, I consulted the next morning with my primary care physician--the internet.  Lots of sites popped up with descriptions of symptoms, treatments, risk factors, and the like, but what interested me most were the words themselves--ugly and unpleasant.  As I've written before, the medical profession seems especially taken with nasty words.  Here are some new definitions for the words that constitute the world of acid reflux and its more serious counterpart, GERD (gastroesophageal reflux disorder):

GERD--A nickname for Gertrude

Acid reflux--A series of repetitive LSD trips

Dyspepsia--The act of dissing Pepsi in favor of Coke

Regurgitation--The recitation of Gregorian chants

Lower esophageal sphincter--the part of the sphinx where the human head meets the lion's body

Hiatal hernia--a shell necklace made by indigenous Hawaiians

Dysphasia--A phase of the moon when the earth is most distant from the sun

Barium swallow--A species of aerial-feeding birds native to the barrier islands of Virginia and North Carolina

Esophageal manometry--A measuring device used to determine the age of Aesop's Fables

Endoscopy--A close examination of "Endymion," a poem by John Keats

May Monotony

The news this week, I'm sorry to say, isn't interesting to me.  I loved the photos of Chris Christie and Prince Harry, and Angelina Jolie's disclosure was provocative on many levels.  But otherwise, the reporting of this week's events--the IRS, the AP, Benghazi--seems overridden by hyperbole and distortion.  So I'm posting a picture of my columbine instead.

Lilly

Here's a break from last week's bad news.  Miranda took these pictures of her first childhood friend Lilly, who has Cornelia de Lange Syndrome, a genetic disorder with physical, medical, and cognitive symptoms.  Lilly rides every week at the North Carolina Therapeutic Riding Center, which provides equine therapy for kids with autism, learning disabilities, cerebral palsy, Down Syndrome, and other similar challenges.  On Saturday the kids competed in a horse show.

We didn't know whether Lilly would agree to ride that day, but here she is on her trusted horse Gigi:

 
The instructors and volunteers at the Center give hours of time to help deepen the children's lives:

Maybe the fake horse was easier to ride:

In the end what really mattered was this--Lilly wore pink boots to die for:

Medical Millionaires

Steven Brill's report in this week's Time magazine details the outrageous medical costs that are passed on to consumers.  Read it and weep.  In "Bitter Pill" he follows the money--to administrative salaries, expensive equipment, and old-fashioned price-gouging.  Here's a condensed version of the article, which you can sing to the tune of "How Much is that Doggie in the Window?":

How much is that gauze pad that I need now?
The one that the hospital bought
I think it's sold cheaper at a Walmart
But sadly I'm stuck here and caught.

The hospitals charge us what they feel like
For drugs and machines and lab work
Don't try to make sense of bills they send you
You'll end up by going berserk.

The doctors don't make the really big bucks
Consultants and drug makers do
Machines and equipment are real cash cows
Whose cash comes from me and from you.

So try not to ever, ever get sick
Don't land at the hospital's door
For if you are there for even one day
You'll end up by being quite poor.

Random Questions from the Week's News

Is Chris Christie becoming a Democrat?  (Answer: Possibly.)

Is Time magazine about to redirect the healthcare debate, with Stephen Brill's exhaustive cover story about the rip-off costs of American medicine?  (Answer: I hope so.)

Can Congressional Republicans become even more dysfunctional?  (Answer: Afraid so.)

Did the NC legislature really vote to refuse Medicaid expansion and to return $64 million in unspent grant money to the federal government?  (Answer: Incredibly, yes.)

When do the Cardinals arriving at the Vatican change into their red robes (and do they wear matching shoes)?  (Answer: You know the Vatican, "Mum's the word.")

Medical Malapropisms

January and February are big medical months for me, when I immerse myself in the world of doctors and dentists.  Though I find the language of medicine largely unappealing, yesterday I came upon the word "osteopenia" and realized that it was an unusually pretty word whose definition doesn't match the way it sounds.  So here are some proposed alternative definitions for words from my medical records, making the unpleasant perhaps a bit more pleasant:

Osteopenia--an island off the coast of Italy

Phlebotomist--a Medieval botanist

Mammographer--one who charts the migrations of whales

Bitewings--yellow-crested birds native to Belarus

Neoplasm--A premature baby platypus

Cecal polyps--Underwater caverns ringing the Galapagos

Carcinoma--Female Spanish filmmaker

Ileum--A Greek melodic tune

Mucosal--Of or pertaining to the coastline of Muscat

Atypical nevus--A blue star visible only in the southern hemisphere

Medical Malarkey

A headline on nytimes.com last night caught my attention: "Test for Cervical Cancer May Detect Other Types."  I clicked on the article eager to learn which cancers might now be treatable.  The news sounded promising.

I should have known better, for a few sentences later came the usual let-down: "But the research is early, years away from being used in medical practice, and there are caveats."

Sometimes I feel like telling medical researchers to keep their work to themselves until they have proven methods of treatment.  Such thoughts are ignorant, I realize, for disseminating information is crucial to advancing knowledge.  Nonetheless, we read these sorts of stories over and over again, raising false hopes for what's available now.

Medical research and its accompanying reporting are full of misleading, confusing information.  Take this recent one, for example.  After being told for years that most of us need to lose weight, we read in The Times that a "Study Suggests Lower Mortality Risk for Overweight People."  "Fat per se is not as bad as we thought," says one researcher, while another says, "We wouldn't want  people to think, 'Well, I can take a pass and gain more weight.'"

The contradictions are almost laughable.  It's hard to know what to do.  But continuing to view our medical profession as somehow holier than thou is misguided. 

I think the emperor wears no clothes.

Heavenly Health Insurance

The absurdity of American health insurance arrived in my mail not long ago.  My friend Hildegard, who died recently and who would have howled with laughter at this nonsense, received a HIPAA certificate from her former insurance company.  No doubt she'd be glad to hear that she'll need this evidence of coverage--when she arrives in heaven--"to reduce a preexisting condition exclusion period under another plan, to help [her] get special enrollment in another plan, or to get certain types of individual health coverage even if [she has] health problems."

Health problems?  Does this include death?  I wouldn't be surprised to hear that St. Peter himself collects co-pays from every American who arrives at the pearly gates.

We've got an antiquated system of health insurance.  The HIPAA Portability Rights that Hildegard's certificate guaranteed were an important step in 1996, but this was 16 years ago.  We've got to join the 21st century.

Obamacare moves us in the right direction.  I'm interested to see what happens when the state and federal governments establish the newly-required exchanges.

In the meantime, don't worry if you're covered by insurance at work: if you die, your next insurer can't hold your death against you.

Blessed are the Merciful

Sometimes it's hard to feel thankful when friends and family are sick, and loved ones have died.  It's wearing dealing with illness and death, even when illness is treatable and death is expected.  I'm tired of doctors' offices and emergency rooms.

A few people have made these weeks easier, however, and I thank them for their kindness:

The woman who picked me up in her car 3 weeks ago when I was running to the Duke Emergency Room, afraid that I'd be too late to see my friend Hildegard one last time.

The nurse at the Forest at Duke who, when she saw me the next day and learned that she and I and Hildegard had all grown up near Philadelphia, showed me with delight a large, framed photograph of the city.

The dermatologist I saw Tuesday who is simply the nicest doctor I've ever had.

The receptionist at the Pediatric ENT Clinic who shares my sense of humor and thanked me yesterday for making her laugh.

Our pharmacist Nancy--who I also recognized last year at this time--who is unfailingly kind, professional, and conscientious.

In the Botanical Gardens, as in Life. . .

The Republican Party keeps getting kookier and kookier

Dominated by old, angry white men

Their misogyny is breathtaking.

The rest of us watch their antics puzzled, in disbelief

As these creatures--with tough shells and thick skin--trudge ever onward.

On Mary Kennedy

For those of us who've been around for awhile, the news of another tragic, untimely Kennedy death was no surprise.  We know the drill: initial news reports of something awful, an explanatory family statement, a gathering of the family and other famous people at a New England church, and handsome children as pall bearers--bearing weight beyond their years.  What are we to make of this?

When something happens repeatedly, I believe we're meant to take notice.  Many of these deaths have been the direct result of mental illness and its twin sister substance abuse, or these have been implicated in the deceased's life story.  The so-called "Kennedy Curse" is the unspoken scourge in far too many American families.

Here we are in the 21st century with smart bombs and smart phones and smart boards to take your breath away.  Yet when it comes to treating severe mental illness, we are no farther along than our Elizabethan ancestors were.  Macbeth's lament for his wife's madness could be spoken by many today:

"Canst thou not minister to a mind diseased,
Pluck from that memory a rooted sorrow,
Raze out the written troubles of the brain,
And with some sweet oblivious antidote
Cleanse the stuffed bosom of that perilous stuff
Which weighs upon the heart?"

The answer in too many cases is still "no."

Perhaps if we addressed mental illness with the same intensity that we give warfare and technology, we could offer patients more hope.  Instead, the doctor's response in the play--"Therein the patient must minister to himself"--is still often what happens today.  And as Mary Kennedy reminds us, this is unacceptable.

3 Ring Circus

So now the health care bill has moved to Ring #3, our august Supreme Court, which may overturn the work of Rings #1 and #2. Meanwhile, medical costs keep rising and more people lose health insurance. It's as if Washington fiddles while America burns. Here's a revised version of "Send in the Clowns" (with apologies to Judy Collins):

Isn't it rich?
Aren't we screwed?
Us here all the time paying bills
You in your robes. . .
Where are the clowns?

Isn't it strange?
Don't you agree?
One who keeps losing ground
One who won't budge. . .
But where are the clowns?
Send in the clowns.

Just when we'd hoped for a change
Finally thinking Americans would be insured.
Hoping for fairness for all in our usual way,
Sure of our rights. . .
No one is there.

Don't you love farce?
Your fault, we fear.
We thought that you'd want what we want. . .
Sorry, D.C.
But where are the clowns?
Quick, send in the clowns
Don't bother, they're here.

Isn't it rich?
Isn't it queer?
Not having insurance after all these years.
But where are the clowns?
There ought to be clowns. . .
Well, maybe next year.

A Modest Proposal

In the spirit of New York City's release of teacher evaluation scores last week, I propose that we conduct a similar process for our nation's doctors. Included in our report will be only general practitioners and pediatricians, since they--like teachers--are paid less than others with comparable degrees. We'll use as our measure the weight of each doctor's patients over a two-year period, just as NYC's teachers were evaluated based only on student scores on standardized tests.

Other measures will not be included. Doctors will receive no credit for preventive health screenings, effective management of chronic diseases, accurate diagnoses, or patient advocacy. Factors contributing to patients' weights will not be considered; all that matters is the number of patients who maintain a healthy weight. Doctors will lose points for overweight and obese patients, and for any patient who gains weight during the evaluation.

Results will be published online in The New York Times, The Washington Post, the L.A. Times, and USA Today. All you'll need to do is type in the name of your doctor and her score will appear. Kathleen Sibelius, Secretary of Health and Human Services, will quote her co-worker Education Secretary Arne Duncan on the release of such information: "Silence is not an option."

The American Medical Association, in protesting the evaluation process, will be denounced for behaving like an angry teachers' union. Individual doctors will be held in contempt by their patients, who will think they know more about practicing medicine than doctors do. Fewer young people will apply to medical school, realizing that professions treated with disrespect can't flourish.

Instead they'll try teaching, and end up right where they started.

Quotes of the Week

Here's what a few people said this week. We need voices like these when hypocrisy and deception are so widespread:

Reporter Marie Colvin, speaking before she died yesterday about Syrian armed forces: “It’s a complete and utter lie they’re only going after terrorists. The Syrian Army is simply shelling a city of cold, starving civilians.”

Virologist Renato Dulbecco, who died Sunday and whose Nobel Prize-winning research showed that genetic mutations cause cancer: “While we spend our life asking questions about the nature of cancer and ways to prevent or cure it, society merrily produces oncogenic substances and permeates the environment with them.”

New York Times columnist Gail Collins, yesterday, in discussion with David Brooks about the abortion legislation proposed in Virginia: "I’m being driven crazy by people who are obsessed with limiting the scope of government, but feel perfectly free to demand that government get involved in women’s most personal choices."

Former Labor Secretary Robert Reich commenting on the huge sums of money that superdonors are contributing to conservative PACs: "Whoever emerges as the GOP standard-bearer will be deeply indebted to a handful of people, each of whom will expect a good return on their investment. . . Never before in the history of our Republic have so few spent so much to influence the votes of so many."

Food writer Mark Bittman commenting on Procter & Gamble's sale of Pringles to Kelloggs: "[If we didn't process so much real food,]Kellogg’s and P.&G.’s bottom lines might not look so good. We ourselves, however, might look better, as would our health care bills, which in general rise along with Big Food’s influence and profits."

Drug Shortages

The news this week that hospitals face a shortage of the drug methotrexate to treat a form of childhood leukemia sent chills down my spine. Imagine being the parent of a child ill with this disease and learning that, here in the United States, we don't produce enough of this curative drug. You'd think that you were living in a developing country, not in the richest nation in the world.

When I hear stories like this, I feel confirmed in my belief that our nation has its values turned upside-down. If there's one thing we should be able to do well, it is to take care of our sick citizens, especially our children. We have the best research institutions in the world, devoted doctors and nurses with access to the highest-quality equipment, a long-standing tradition of manufacturing, and pharmaceutical companies raking in huge sums of money. Surely this combination of talent and wealth should produce life-saving drugs.

Yet 287 drugs are currently in short supply.

The horror stories are forcing Washington to pay attention, and some effective measures have been implemented. Still, we should demand better for ourselves and for our fellow citizens around the world. Most of us would agree that our family's health is what's most important. Can't we demand that our leaders and institutions follow suit?

Hysterical Mothers

In her book, Overtreated: Why Too Much Medicine is Making Us Sicker and Poorer, Sharon Brownlee analyzes the shortcomings of American medical care. It's an excellent book for lots of reasons, though I was most struck by one doctor's comments.

Cyndra Mogayzel, a primary care physician no longer in practice, operated a successful inner-city clinic in the 1990s largely, she believes, because she took the time to listen to patients. As such, she became expert at handling "hysterical mothers," about whom she has this to say:

"A quote 'hysterical mother' is one of three things. . . One, her kid is really sick and nobody is listening to her. If you think something is wrong with your kid, and nobody is listening, nothing makes you crazier. Two, her kid isn't sick and nobody has bothered to take the time to explain to her what's going on and why she doesn't need to worry. Or three, she is stressed for some other reason--divorce, domestic violence, financial problems--and you need to know what's going on in order to properly care for and protect the child."

Having felt like a hysterical mother more than once, I wish that Dr. Mogayzel could impart her wisdom to her former colleagues. For I find that even doctors who are mothers have dismissed me and my concerns to the detriment of my children's health.

The myth of the all-knowing doctor is simply that. Who observes a child more closely: a mother or a doctor? It seems like a silly question, yet our health care is predicated on a belief that a doctor's 5-minute (at most) interaction with a child yields more information than a mother's 24/7 observation.

No wonder we're crazy. The experts write us off.

Next time you see a hysterical mother, or feel like one yourself, think twice. It's the system that's crazy.