All I Want For Christmas Is You

Today, along with millions of other Americans, I made a last minute dash to the mall.  Since Hanukah fell most improbably on Thanksgiving this year, and since I was too busy burning the turkey and side dishes to burn candles, we decided to celebrate Christmas instead.  It will be a small celebration—my daughter is on call during her internship in Boston, and my older son works for the State Department in Washington, DC.  Apparently world crises do not stop for Christmas, or any other holidays for that matter. So it will be a small crowd around the table—just my youngest son, my 88 year old father, and my husband and me.  Who was it that said, “As we grow older, our Christmas list gets smaller as we realize the things we really want can’t be bought”?

I had already taken care of gifts for the rest of the family, but the motivation that drove me to the mall today was the question of what to get for Dad.  He’s been very generous with me lately, helping shoulder the bill for the massive relandscaping project, and helping my daughter pay off her medical school loans.  What does one give a (mostly) retired plastic surgeon who has already traveled to the far corners of the earth, who has driven fast cars (and instilled a love of them in me, his daughter), and who has spent the last year trying to pare DOWN his earthly possessions from the contents of two residences in Snowmass, CO and Houston, TX.   What he wants, I can’t give him—the ability to play tennis and golf and to ski again, the ability to live at altitude without oxygen, the ability to regain his hearing, lost after a car accident, and a loving companion to keep him company as the years wear on.  Unfortunately magic is not in my repertoire.

In the end, I spent a rather aimless two hours wandering through the maze of stores, rejecting fancy cufflinks, smelly colognes, silk ties, comfy slippers and expensive watches.  I hesitated at Brookstone—there was a mini projector and a tripod which would enable PowerPoint presentations and the exhibition of literally thousands of slides, now converted to digital, of patients whose physical imperfections had been corrected long ago but whose emotional scars might linger on. In the end, I rejected the set up as too complicated—another technology to learn and forget.  I bought a few small things, and got back in the car.  As I neared home, I stopped in the local liquor store and bought him a nice bottle of Tanqueray and a perfect lime—his favorites.  What do we all really want for Christmas? We want the health and happiness of our loved ones, and also, for me, my patients.

All I really want for Christmas is you—all of you.  I hope you all have a wonderful day.

Happy Birthday To Me

Ex-marines are some of the toughest patients I ever see, when it comes to dealing with pain from cancer.  And CAREER ex-Marines have the market cornered on toughness.  Take for example, an elderly friend in Kansas who woke up one morning with severe upper back pain, feeling faint, and decided as was his Marine Corps habit that a cold shower would be “just the thing.”   The cold shower likely saved his life, since he was quite hypothermic when the ambulance arrived to take him to emergency surgery for his dissecting aortic aneurysm.  Three months ago when I saw a new patient, a seventy year old former Marine, shifting uncomfortably from his chair to his feet and back to his chair, grimacing with pain, I knew it was serious.

This patient had undergone a radical cystectomy for bladder cancer eighteen months prior.  In layman’s terms, his bladder had been removed and a portion of his bowel refashioned into a conduit to carry the urine outside his body into a bag.  This he bore with no complaint.  After all, Marines adjust.  But a year later he began to have severe low back pain.  His physicians treated him in the usual prescribed manner—physical therapy and anti-inflammatory drugs.  When his pain grew progressively worse, they ordered an MRI of his lumbar spine which was negative, and he was prescribed narcotics.  Unfortunately, when you order an MRI of the lumbar spine, you do not routinely get views of the pelvis.  Finally, he presented to the emergency room with intractable pain and a pelvic X-ray was obtained.  Much to the shock of the ER crew, half of his sacrum was gone, destroyed by recurrent bladder cancer that had invaded bone.  That’s when he was referred to me.

I treated this patient with intensity modulated radiation therapy, in order to deliver the highest dose possible while sparing as much bowel as possible.  He had a very difficult course of treatment—his appetite was poor and he lost twenty pounds; he developed a urinary tract infection which landed him in the hospital; he had diarrhea from the radiation and the chemotherapy which was given along with it; and finally he developed moist desquamation of the skin just over the palpable mass in the right sacrum.  He finished his therapy, but just barely.  I wasn’t sure I would see him again, but I didn’t want his wife to know that I had little faith, so we scheduled him for a six week follow up.

This was a tough week at work.  On Tuesday one of my breast cancer patients was diagnosed with a brain metastasis at age 37, and another breast cancer patient, a lovely elderly woman, suffered a pathologic fracture of her hip from a bone metastasis. By yesterday, I was strongly contemplating calling in sick when I wasn’t for the first time in my life.  After all, today was my sixtieth birthday and I had had quite enough of sadness for one week.  But I didn’t–I came to work this morning to a fully booked schedule of follow ups and my ex-Marine was my last patient of the day. I was pretty certain he would be a “no-show.”  I should have known better.

The man that I had known previously in a wheelchair, disoriented from his pain medications, came in with a spring in his step, color in his cheeks and his wife and sister in law in tow.  He gave me a huge bear hug, and proudly unveiled his behind to show me how nicely his skin had healed. He told me that he was nearly completely off of his pain medicines, and that he felt so much better that last night he had shot a game of pool. He said he was looking forward to Christmas, and to a better year next year.  He told me that the medical oncologist had ordered a follow up MRI of the pelvis, but he was going to wait until after the first of the year—he knew that his respite from pain was a gift horse whose mouth did not need an examination.

I got some very nice birthday presents this year and I appreciate each and every one of them.  But sometimes, for the doctor, the best present of all is seeing her sickest patients feel better.  Happy Birthday to me!

A Month Late and Several Dollars Short

San Diego is a desert and the last few years have been completely rainless from April to November with a few light sprinkles in the winter months.  So I didn’t think too much of it when some of the lesser landscaping started to die off—an azalea here, a rhododendron there, a wilted geranium.  And the grass, well, you can tell I’m a bit of a fanatic when it comes to my dogs, and the worst case of bladder cancer I ever saw was in a young woman who worked for ChemLawn, so when the grass started to die I was philosophical:  maybe it will come back when it rains.  But “Sugar Magnolia” was always one of my favorite songs and when the beautiful thirty foot magnolia tree failed to sprout new leaves this past spring, I began to realize that the problem needed investigating.  The withered palm trees and the parched horse pastures were the proverbial last straw, but my water bills still came with a warning: “We are in a state of drought: PLEASE CURB YOUR USE OF WATER!”

Just before I left for Jamaica in October, the Santa Ana winds came from the east, and parched branches began to snap and fall heavily across the driveways and corrals.  As I walked out to check on the horses, a huge limb from a water starved eucalyptus was jettisoned towards my head.  I put my arm up to ward off the blow, and was rewarded with cuts and bruises worthy of a prizefighter.  That’s when I called Dave, my friendly arborist and landscaper. As we walked the property, he said, “What has happened here?  It used to be so beautiful.”  I looked at my old check registers and realized it had been six years since he had last done any work on the old homestead.  I was living on three acres of dirt.

Initially the plan had been to trim the trees for safety’s sake.  Just the trees.  The eucalyptus grow like weeds here, and mine were over 100 feet tall.  There are at least forty of them. The estimate was ten days at $1500 a day.  You have to pay people a lot of money to climb trees that high.  A month later, the wood chipper was a permanent fixture in my driveway, the horses no longer spooked at the noise, and I could heat my home for the next ten years with the wood piles, if such a thing were necessary in San Diego.  While the men who looked like Cirque du Soleil performers were lowering huge branches with ropes from treetops, Dave was investigating the sprinklers.  As he suspected, broken pipes underground were pouring water into the creek at the bottom of the property.  Over and out.  There was no water where water was sorely needed, yet I was using more than my share.

Ten weeks after the work started, today the men finished up.  I’ve gotten to know them, their children, and their preferences for fast food.  Matt took it upon himself to get my fountain going for free, with a pump that was being wasted in his garage.  That fountain which had not worked since we moved in sixteen years ago is now bubbling pleasantly, masking the noise from the street.   The dead juniper bushes lining the driveway have been replaced, and there are new pink and purple geraniums blooming amongst the azaleas and ice plant.  Norman and Dash have grass again in their pastures and the dogs will no longer make mud pies when they venture out at night by the fence line which was inexplicably always wet and dark.  A state of the art weather station will now dictate how often and how much the sprinklers sprinkle.  All is right with the landscaping.

I had hoped to go back to Africa for my sixtieth birthday, but that isn’t happening. I have a week off after Christmas and I will be taking a lovely “staycation” here in the paradise that is my backyard.  Today I signed over my end of the year bonus check to Dave, who complained, “We went so long over time and budget on this project, I could barely pay my men.  My children won’t be having Christmas this year. My wife is going to divorce me.”  I am very gullible and I have a soft heart.  I threw in an extra $200 and said, “Dave, please use this to buy presents for your wife and kids. “  I figure I’ve got about a week before the deerhounds start their landscraping.

The Case of The Missing Chicken

It happened two or three weeks ago, and it’s still bothering me so I might as well write about it.  Harvest Ranch Market, in Encinitas where I work, makes a pretty good rotisserie chicken.  I don’t have much time to cook during the week, so many Sundays I’ll head over there and pick up two whole cooked chickens.  On Sunday night, I separate the breasts from the legs and thighs, and tear up the dark meat and skin for the dogs—that is, what I don’t eat while I’m doing it because secretly I like the dark meat better, even though it’s not as good for you.  I put the dark meat into a Tupperware container and the chicken breasts, plump and juicy on a plate, cover them with saran wrap and use them in salads and sandwiches during the week.  That is my routine.

Sunday nights are also TV nights around here.  Dexter’s off the air now, and Game of Thrones’ new season hasn’t started, but Homeland and The Good Wife keep me occupied so that I can delay laundry and bill paying until the wee hours, the better to put off Monday.  So two weeks ago on Sunday night, I did my chicken thing, and then settled down to watch my shows.  I must have been a little distracted because I have no recollection of putting the saran wrap on the chicken, or opening the refrigerator. By the time I was done with TV for the evening, I folded laundry, cleaned up the kitchen and went to bed.

Monday morning I went to feed the dogs, and the little dog Yoda, who never liked kibble, waited patiently for his ounce of chicken breast.  I opened the refrigerator door, and looked for the chicken breasts.  I did not see them, which is not at all unusual in my refrigerator, which is even less well organized than my desk.  So I shrugged, gave the little dog some dark meat and went off to work.  But the fact that I couldn’t find the two pounds of cooked chicken breast in my own refrigerator was bothering me, so I called my husband who works from home.  I said, “Please go look in the refrigerator and tell me that the chicken breasts are there that I cut up last night.”  He dutifully went to the refrigerator and reported back, “No, I don’t see any chicken breasts.”  I said, “I KNOW that I put 4 half chicken breasts on a plate.  But I don’t remember what happened to them after that.  Could I have been so distracted I threw them away?  Please go look in the garbage can in the garage.”  I heard a sigh on the other end.  Moments later he said, “The chicken breasts are not in the garbage can.”  I said, “Did you REALLY look for them?”  He said, “Yes, I really looked for them.”

My youngest son had stopped in Sunday evening to pick up his mail.  He was there while the chicken was being dismembered.  I said to my husband, “Please call E. and see if he was hungry and took the chicken breasts.”  He said, “I don’t think he would have taken an entire plate of chicken breasts.”  I said, “Call him!” Twenty minutes later he called me back and said, “E. didn’t take the chicken breasts.”  I had a long day at work, but when I got home at seven I did not go into the house to change my clothes.  I went directly to the garbage can, in my nice brown wool suit and my silk blouse, and I rooted around.  I knew that those chicken breasts must have been accidentally thrown away, probably by my husband, who likes to clean up after me.  Twenty greasy minutes later, I confirmed that indeed, there were no chicken breasts in the garbage. Or in the refrigerator.

I love my deerhounds, even though at times they’ve been known to steal and hoard.  Izzy was famous for taking ALL of the toys and stuffing them behind the seat cushions of the couch.  He also stole everyone else’s bones, and buried them in secret places where they still wash to the surface during a rainstorm, white and glistening, two years after his death.  My old boy Magic has never done a thing wrong.  He is a huge dog, 34 inches at the shoulder, but he is unfailingly polite, waits his turn for meals, never once chewed on the furniture and never peed in the house.  He uses the kitchen counter as a chin rest without even a slight stretch.  But two pounds of chicken breast, right after dinner?  And as I said, he’s never done a thing wrong.

Looking back, I was a little distracted by that Homeland adrenaline rush.  Those chicken breasts are around here somewhere.  I just hope I don’t run into them tucked behind my leather armchair’s cushion, or under a far corner of the rug.  Queen and Quicksilver aren’t telling, and Magic just grins when I ask him.

The Way I See It

When it comes to surgery for cancer, having a “positive margin” is a bad thing.  It means that when the surgeon said he “got it all,” even though he meant it with all of his heart, likely he didn’t.  For a woman undergoing a lumpectomy for breast cancer, that positive margin means a re-excision of the lumpectomy site or alternatively, a mastectomy.  For a woman who has just had a mastectomy, it means that she will likely be seeing me.

I saw a new breast cancer patient on Thursday, a very attractive woman in her early fifties.  She had undergone a mastectomy last March, and had a tissue expander placed at the time to facilitate a later reconstruction with a silicone implant.  The final pathology showed positive lymph nodes on her sentinel node biopsy, and a positive margin where the tumor was close to the chest wall.  She required chemotherapy because of her lymph node involvement, and radiation to her chest wall for the tumor cells that may have been left behind.  She finished her chemotherapy without any difficulty in June.  But instead of coming to me at that time, she elected to complete her reconstruction first.

The first time her expander was replaced with a permanent implant, in August, there were complications which resulted in a failed reconstruction. The plastic surgeon elected to take her back to surgery in November, and replace the implant, and transfer fat cells from her inner thighs to make the reconstructed breast rounder and more perfect.  When the patient saw me on Thursday, she was still not entirely happy with the result, and was looking forward to having additional fat transplanted in the upper inner quadrant.  She guided my hand to the area and said, “See?  The tissue is so THIN right there.”  I stared at her reconstruction in amazement.  It was one of the best I had ever seen.

But yes, there was a problem.  It was not a problem that she had concerned herself with.  The problem was that it was nine months after her mastectomy, and that no one had pointed out to her that a local recurrence of her breast cancer, for which she was certainly at high risk, is a harbinger of metastatic disease and death.  In other words, she had failed to grasp the fact that it was her cancer, and not her breast reconstruction, that she needed to pay attention to.  It took me the better part of an hour and a half to convince her that she should proceed with radiation BEFORE her plastic surgeon achieved the perfection that she sought, and BEFORE her cancer recurred, if it has not already.

I understand the importance of breast reconstruction, and of feeling whole, and feminine again.  But I also understand the evil nature of “the beast.”  I may be a curmudgeon, but I want my ladies to comprehend that it’s not about the boob and the plastic surgeon isn’t going to tell you that—that’s MY job.  First and foremost, pure and simple, it’s about getting rid of the cancer. That’s the only priority.  It’s just the way I see it.

The Techno-Freak in Me

At home, I have trouble working the audio-visual system.  A few years ago, my husband bought a television set for our family room with a huge screen, for better sports and movie viewing.  Gradually components were added on—a surround sound system, the keyboard to stream video from Netflix, the standard DVD player, and, a gift from a movie loving friend who knows how much I like foreign language films, a DVD player that plays movies released only in Europe.  The composite system required, at one point, five or six different remote controls to run and I was hopeless until Mick at the meat counter informed me that you could buy a single remote controller by Logitech that could run EVERYTHING.  I invested in one at Best Buy, but I confess–I still have no clue how to work it.

It is a mystery to me why I cannot figure out how to work the television or the coffee maker, but the inner workings of linear accelerators and cyclotrons, and the generation of high energy X-ray, electron, and proton beams pose no problem.  Thirty two years ago, when I started in radiation oncology, our tool box was very limited—treatment planning systems were rudimentary and “two dimensional”—in other words we could only visualize and calculate the trajectory of a beam from each direction separately, and sum the total, in one cross sectional plane of a patient’s body. Two developments in the last generation changed all of that: three dimensional treatment planning, where the body is reconstructed from a series of CAT scan images, along with intensity modulated radiation therapy, where the beams can enter the body from 360 degrees of rotation where tungsten rods not only shield the normal structures from every direction but also enter the path of the beam to block the “overshoot” of tissues beyond the tumor. “Star Wars” technology met radiation therapy at the turn of the millennium.

The last ten years have brought a new revolution in radiation oncology—the advent of the proton center.  In November I had the opportunity to spend a full day at an orientation for the new Scripps Proton Therapy Center here in San Diego. Six years ago, I traveled to the existing proton facilities at Loma Linda, University of Florida, Massachusetts General Hospital and MD Anderson as part of a task force to determine the feasibility of my own institution building such a center. I was surprised at that point in time to discover that the technology of proton beam radiation therapy had not advanced since my old days at the Harvard Cyclotron in the early 1980’s. The opening of the new Scripps Center will change all that—for the first time a scanning “pencil beam” of high energy protons will be able to “dose paint” the radiation directly onto the exact shape of the tumor, delivering the fastest, most accurate and potentially the least toxic radiation therapy ever.

So what does this mean for patients in an era of cost reduction and intensive scrutiny of new technology?  Of the utmost importance, it means that more and more children with cancer will be treated with a method which will not only save their lives, but will significantly reduce the risk of secondary complications from the radiation.  In 2010, 465 children with cancer were treated with protons.  In 2012 this number rose to 695.  For the children who receive cranio-spinal radiation for brain and spinal cord tumors, this means a 7 to 12 fold reduction in secondary malignancies and a significant reduction in loss of IQ compared to standard radiation therapy.  For patients previously thought to have incurable cancers such as hepatocellular carcinoma, local control rates of up to 80% are being achieved.  For patients with brain or spinal cord or bone tumors in critical areas which abut sensitive normal tissues, it may mean the difference between sight and blindness, or ambulation versus paralysis.

The critics of proton beam therapy cite the fact that the majority of patients currently being treated with protons are prostate cancer patients, where as yet no real benefit has been shown in terms of survival or complications over intensity modulated radiation therapy. This may change as we select younger patients with more aggressive cancers for the treatment. In the meantime, I remain as excited by this technology as I was when I first followed the physicist into the cluttered old cyclotron building on the Harvard campus in 1982.  Next month the techno-freak in me will be privileged to participate in the most advanced radiation therapy the world has ever seen.

Thank you to Dr. Carl Rossi for the statistics provided in this entry.

Parlez-Vous Espanol?

Sometimes I meet the most amazing people.  A few weeks ago I had a medical student who was visiting from the University of Vermont.  His name was Stanislaus and he spoke perfect English, with a delightful Russian accent.  As we got to know one another, he spoke of growing up in a village in Chechnya, and coming to the United States as a refugee when he was nine years old.  He learned English quickly, and in short order discovered that he had a facility for languages.  By the time he was in high school, he spoke Russian, English, Spanish and French fluently.  When he matriculated at Berkeley, he added Italian, Portuguese and Hebrew. He wanted to be a translator for the United Nations, until he discovered the world of science and medicine.  As he examined one of our Hispanic patients, he gently touched her shoulder and expressed his concern in flawless Spanish.  He will make a fine doctor when he graduates this coming June.

Unfortunately I do not share this gift for foreign language.  Growing up in Houston, Texas I made the misguided choice of taking French in high school.  The year was 1969, and Serge Gainsbourg had just recorded a song he wrote for Brigitte Bardot with his then girlfriend Jane Birkin called “Je t’aime.”  I was sixteen and smitten.  Three painful years of language lab left me breathless, but far from sexy or fluent. I tried again in college, until the beautiful blonde French teaching assistant swept my boyfriend, ten years her junior, off his feet.  My crowning achievement was a term paper written entirely in French about the central thesis of Voltaire’s Candide—“Tout est pour le mieux dans le meilleur des mondes possibles”—“All is for the best in this best of all possible worlds.”  I had no clue that Voltaire was being facetious, and  thus embraced this philosophy, if not the language, ever since.

After my busy medical school obstetrics rotation at Jefferson Davis County Hospital, my remembered Spanish consisted of two commands:  “Empuje” and “No empuje”, meaning “Push” and “Don’t Push”.  These phrases were not very useful in the management of cancer patients. In 2004, having practiced in a community for ten years where Spanish was the language of birth for many of my patients, I decided to attempt to correct my foreign language deficiency.  I signed up for a two week intensive Berlitz course in Spanish. I was assigned two full time instructors—for the mornings, a handsome Argentinean man, and for the afternoons, a beautiful Mexican woman.  Their mission was to speak only Spanish to me, eight hours a day, for two consecutive weeks.  My job was to pick up enough Spanish, through inference and repetition, to be able to respond, and then shortly converse with them in their native language. At this point I had spoken no French for twenty years but despite this fact, an amazing thing happened.  At the end of my two week course, these dedicated instructors were still speaking to me in Spanish. And I was answering in fluent French.

In 1984, when I was pregnant with my daughter, my husband and I took a long awaited trip to Paris.  Like me, my husband had taken French in high school and college, and like me, he has no facility for foreign language.  But we were determined to use our rusty French.  One evening, we had dinner at a fine restaurant on the Champs Elysees. After a four course meal including a small glass of red wine, not quite contraband for a pregnant woman thirty years ago, it was time to go and we decided to ask our waiter for our checked coats. But there was a problem—neither of us could remember the French word for “coat”.  We stuttered and stammered and finally resorted to pantomime.  The waiter was stymied at first, but finally caught on.  “Ah, Madame et Monsieur—you  want your COATS!”  And then, with a wicked grin,  he instructed us: “Vous voulez vos manteaux!”

Needless to say, all three of our children took Spanish.  Many years of Spanish. They are better at foreign language than either of their parents, and that has served them very well.

Be Prepared

My friend Rachel and I have done a fair amount of traveling together over the last ten years.  Mostly we’ve gone to dog shows, with occasional side trips thrown in.  We like a lot of the same things—deerhounds, horses, art, jewelry, and husbands who stay home with the animals while we jaunt around the country. Rachel had a military career before settling down in Sierra Vista, AZ, and I know it drives her crazy that I am ALWAYS late because she’s always buttoned up early and squared away.  She has a big cargo van, which is even more spacious than my Ford passenger van, so occasionally she helps me out when I need to transport things. In exchange for putting up with my tardiness, Rachel gets to observe my idiosyncrasies and provide our other friends with endless entertainment by telling stories about me.

In August Rachel agreed to meet me in Colorado at my parent’s condominium there, which had just been sold, to help me transport my father’s artwork and my mother’s “collectibles” (yes, Mom loved tschotkes too!) back to San Diego.  Our mission was to sort through twenty years of belongings in twenty four hours from Friday evening to Saturday night, then hightail it back home 976 miles on Sunday morning to be back at work by Monday.  It was a tall order, but we managed.  Most of the furniture was to remain behind to be picked up and donated to Habitat for Humanity, including an almost new and very large television set.  Rachel’s tv at home had just gone on the blink, so I offered her the behemoth in the living room.  She said, “Let’s see how much room we have in the van.”  I said, “Let’s put it in soon, then.”  She said, “I don’t think we’ll be able to get it down the stairs—it’s heavy!” When all was said and done and oil paintings and antiques were sandwiched safely between multiple dog beds, space was at a premium and the television stayed in the living room.

At nine am on Sunday morning, Rachel was seated in the driver’s seat, ready to roll.  In true obsessive compulsive fashion, I told her that I needed to make one more “pass-through”, just to make sure we weren’t forgetting anything important. She sighed and watched the minutes tick away while I ran back into the house.  I realized I had forgotten the closet in the master bathroom.  And that’s when I discovered the treasure trove!  Packaged up neatly into one gallon Zip Lock bags, were dozens of complete first aid kits—the remnants of my father’s many overseas travels.  Each bag was perfect—alcohol wipes, benzoin, gloves, suture material, gauze, dressings, steroid and antibiotic creams, and band-aids.  Many, many band-aids.  My heart was aflutter—I saw a first aid kit for every family car, for the barn, for the spare suitcase, for the dog grooming bag.  While Rachel waited patiently in the car, I stuffed the first aid kits into garbage bags, laundry bags, grocery bags—anything that would hold them. She watched in dismay as I ran to the car and tucked my treasures into every spare nook and cranny.  I was very proud of my resourcefulness, and I offered her some of the take.

Four months later, she still enjoys telling the story.  She regaled the guests who had come to her home a few weeks ago to pick up their new deerhound puppies with the tale of her crazy friend, who walked away from a brand new big screen tv, not to mention crystal and porcelain and her mother’s mink coat (which incidentally made her look like the Michelin tire man) in order to stuff BAGS OF BANDAIDS IN THE CAR!  I let her have her moment of hilarity.  But I know, in my heart, that those band-aids will prove to be far more useful than the mink coat.  The next time someone calls out—at a dog show, on an airplane, at the gas station—“Is there a doctor in the house??!!!”—like a good Boy Scout, I will be prepared.

The Median Isn’t The Message

Since I am still recovering from Turkey Day laziness, I thought I would share one of my favorite essays with you instead of writing something myself.  Bear with me here because it’s long, but extremely instructive for cancer patients, their caregivers, their loved ones, and those well meaning friends who want to tell you everything bad that can happen.  It also explains why I’m still doing what I do after nearly 32 years of treating cancer patients.  The author, Stephen Jay Gould, was an evolutionary biologist at Harvard, who was diagnosed with an “incurable cancer” at age 40.  He lived another twenty years.  Here is what he had to say:

 

The Median Isn’t the Message by Stephen Jay Gould

My life has recently intersected, in a most personal way, two of Mark Twain’s famous quips. One I shall defer to the end of this essay. The other (sometimes attributed to Disraeli), identifies three species of mendacity, each worse than the one before – lies, damned lies, and statistics.

Consider the standard example of stretching the truth with numbers – a case quite relevant to my story. Statistics recognizes different measures of an “average,” or central tendency. The mean is our usual concept of an overall average – add up the items and divide them by the number of sharers (100 candy bars collected for five kids next Halloween will yield 20 for each in a just world). The median, a different measure of central tendency, is the half-way point. If I line up five kids by height, the median child is shorter than two and taller than the other two (who might have trouble getting their mean share of the candy). A politician in power might say with pride, “The mean income of our citizens is $15,000 per year.” The leader of the opposition might retort, “But half our citizens make less than $10,000 per year.” Both are right, but neither cites a statistic with impassive objectivity. The first invokes a mean, the second a median. (Means are higher than medians in such cases because one millionaire may outweigh hundreds of poor people in setting a mean; but he can balance only one mendicant in calculating a median).

The larger issue that creates a common distrust or contempt for statistics is more troubling. Many people make an unfortunate and invalid separation between heart and mind, or feeling and intellect. In some contemporary traditions, abetted by attitudes stereotypically centered on Southern California, feelings are exalted as more “real” and the only proper basis for action – if it feels good, do it – while intellect gets short shrift as a hang-up of outmoded elitism. Statistics, in this absurd dichotomy, often become the symbol of the enemy. As Hilaire Belloc wrote, “Statistics are the triumph of the quantitative method, and the quantitative method is the victory of sterility and death.”

This is a personal story of statistics, properly interpreted, as profoundly nurturant and life-giving. It declares holy war on the downgrading of intellect by telling a small story about the utility of dry, academic knowledge about science. Heart and head are focal points of one body, one personality.

In July 1982, I learned that I was suffering from abdominal mesothelioma, a rare and serious cancer usually associated with exposure to asbestos. When I revived after surgery, I asked my first question of my doctor and chemotherapist: “What is the best technical literature about mesothelioma?” She replied, with a touch of diplomacy (the only departure she has ever made from direct frankness), that the medical literature contained nothing really worth reading.

Of course, trying to keep an intellectual away from literature works about as well as recommending chastity to Homo sapiens, the sexiest primate of all. As soon as I could walk, I made a beeline for Harvard’s Countway medical library and punched mesothelioma into the computer’s bibliographic search program. An hour later, surrounded by the latest literature on abdominal mesothelioma, I realized with a gulp why my doctor had offered that humane advice. The literature couldn’t have been more brutally clear: mesothelioma is incurable, with a median mortality of only eight months after discovery. I sat stunned for about fifteen minutes, then smiled and said to myself: so that’s why they didn’t give me anything to read. Then my mind started to work again, thank goodness.

If a little learning could ever be a dangerous thing, I had encountered a classic example. Attitude clearly matters in fighting cancer. We don’t know why (from my old-style materialistic perspective, I suspect that mental states feed back upon the immune system). But match people with the same cancer for age, class, health, socioeconomic status, and, in general, those with positive attitudes, with a strong will and purpose for living, with commitment to struggle, with an active response to aiding their own treatment and not just a passive acceptance of anything doctors say, tend to live longer. A few months later I asked Sir Peter Medawar, my personal scientific guru and a Nobelist in immunology, what the best prescription for success against cancer might be. “A sanguine personality,” he replied. Fortunately (since one can’t reconstruct oneself at short notice and for a definite purpose), I am, if anything, even-tempered and confident in just this manner.

Hence the dilemma for humane doctors: since attitude matters so critically, should such a sombre conclusion be advertised, especially since few people have sufficient understanding of statistics to evaluate what the statements really mean? From years of experience with the small-scale evolution of Bahamian land snails treated quantitatively, I have developed this technical knowledge – and I am convinced that it played a major role in saving my life. Knowledge is indeed power, in Bacon’s proverb.

The problem may be briefly stated: What does “median mortality of eight months” signify in our vernacular? I suspect that most people, without training in statistics, would read such a statement as “I will probably be dead in eight months” – the very conclusion that must be avoided, since it isn’t so, and since attitude matters so much.

I was not, of course, overjoyed, but I didn’t read the statement in this vernacular way either. My technical training enjoined a different perspective on “eight months median mortality.” The point is a subtle one, but profound – for it embodies the distinctive way of thinking in my own field of evolutionary biology and natural history.

We still carry the historical baggage of a Platonic heritage that seeks sharp essences and definite boundaries. (Thus we hope to find an unambiguous “beginning of life” or “definition of death,” although nature often comes to us as irreducible continua.) This Platonic heritage, with its emphasis in clear distinctions and separated immutable entities, leads us to view statistical measures of central tendency wrongly, indeed opposite to the appropriate interpretation in our actual world of variation, shadings, and continua. In short, we view means and medians as the hard “realities,” and the variation that permits their calculation as a set of transient and imperfect measurements of this hidden essence. If the median is the reality and variation around the median just a device for its calculation, the “I will probably be dead in eight months” may pass as a reasonable interpretation.

But all evolutionary biologists know that variation itself is nature’s only irreducible essence. Variation is the hard reality, not a set of imperfect measures for a central tendency. Means and medians are the abstractions. Therefore, I looked at the mesothelioma statistics quite differently – and not only because I am an optimist who tends to see the doughnut instead of the hole, but primarily because I know that variation itself is the reality. I had to place myself amidst the variation.

When I learned about the eight-month median, my first intellectual reaction was: fine, half the people will live longer; now what are my chances of being in that half. I read for a furious and nervous hour and concluded, with relief: damned good. I possessed every one of the characteristics conferring a probability of longer life: I was young; my disease had been recognized in a relatively early stage; I would receive the nation’s best medical treatment; I had the world to live for; I knew how to read the data properly and not despair.

Another technical point then added even more solace. I immediately recognized that the distribution of variation about the eight-month median would almost surely be what statisticians call “right skewed.” (In a symmetrical distribution, the profile of variation to the left of the central tendency is a mirror image of variation to the right. In skewed distributions, variation to one side of the central tendency is more stretched out – left skewed if extended to the left, right skewed if stretched out to the right.) The distribution of variation had to be right skewed, I reasoned. After all, the left of the distribution contains an irrevocable lower boundary of zero (since mesothelioma can only be identified at death or before). Thus, there isn’t much room for the distribution’s lower (or left) half – it must be scrunched up between zero and eight months. But the upper (or right) half can extend out for years and years, even if nobody ultimately survives. The distribution must be right skewed, and I needed to know how long the extended tail ran – for I had already concluded that my favorable profile made me a good candidate for that part of the curve.

The distribution was indeed, strongly right skewed, with a long tail (however small) that extended for several years above the eight month median. I saw no reason why I shouldn’t be in that small tail, and I breathed a very long sigh of relief. My technical knowledge had helped. I had read the graph correctly. I had asked the right question and found the answers. I had obtained, in all probability, the most precious of all possible gifts in the circumstances – substantial time. I didn’t have to stop and immediately follow Isaiah’s injunction to Hezekiah – set thine house in order for thou shalt die, and not live. I would have time to think, to plan, and to fight.

One final point about statistical distributions. They apply only to a prescribed set of circumstances – in this case to survival with mesothelioma under conventional modes of treatment. If circumstances change, the distribution may alter. I was placed on an experimental protocol of treatment and, if fortune holds, will be in the first cohort of a new distribution with high median and a right tail extending to death by natural causes at advanced old age.

It has become, in my view, a bit too trendy to regard the acceptance of death as something tantamount to intrinsic dignity. Of course I agree with the preacher of Ecclesiastes that there is a time to love and a time to die – and when my skein runs out I hope to face the end calmly and in my own way. For most situations, however, I prefer the more martial view that death is the ultimate enemy – and I find nothing reproachable in those who rage mightily against the dying of the light.

The swords of battle are numerous, and none more effective than humor. My death was announced at a meeting of my colleagues in Scotland, and I almost experienced the delicious pleasure of reading my obituary penned by one of my best friends (the so-and-so got suspicious and checked; he too is a statistician, and didn’t expect to find me so far out on the right tail). Still, the incident provided my first good laugh after the diagnosis. Just think, I almost got to repeat Mark Twain’s most famous line of all: the reports of my death are greatly exaggerated.