The Irony of It All

My son wants a government job. After obtaining a Masters degree in Public Policy, with an emphasis on economics, he was the envy of his classmates when he actually got a job.  He has been working for the last seven months for a giant consulting corporation.  Early every Monday morning, at the bidding of his superiors, he takes an early flight from Los Angeles to Denver.  Once he gets there, he rents a car and drives it to the company where he is consulting to remedy an old story—the company grew too big, too fast, and the folks who had the great idea, and who started their little company at the ground floor are baffled and bewildered by the demands of a grown up interstate business.   My son works from early in the morning until early in the morning—sixteen to seventeen hour days being the norm.  At the end of the week, he flies back to Los Angeles, where he actually lives.  By the end of this month, he will hear whether he won the Presidential Management Fellowship he applied for.  If he did, he will go to Washington, DC and join one of the bureaus or the State department where he will learn the intricacies of our government while making low wages and in all likelihood, being expected to work nine to five.

I don’t get it, as much as I admire public service.  Perhaps it is because I actually HAVE a government job, but only in the sense that I am paid through the University of California. My benefits and retirement plan are top notch.  My mentality however, if not my salary, is still back in the private practice customer service mode.  In my little satellite department, we start early and we work late and we get the job of treating cancer patients done, no matter how long it takes.  When I took this job five and a half years ago, I was at the “mother ship” cancer center for a year, while the satellite was being built.  This gave me the opportunity, for the first time in my career, to observe folks who actually treat the business—no, the “calling”—of caring for cancer patients as a government job.  Each role, whether it be receptionist, billing specialist, or medical assistant is fragmented down to its smallest components, and each person is judged by whether they can manage their own limited but particular task.  Never have the words “not in my job description” been adhered to so strictly.

When I hired my staff for the new satellite in 2008, my prime objective was to get people who shared my vision of service to patients, and who I knew would go above and beyond their job descriptions if necessary.  People who could cross cover other department members, and who were eager to learn new skills were at the top of my list.  I did not want to hire anyone who used an answering machine to screen calls.  I wanted one thing—plain and simple—commitment to the best care for our mutual patients.  No matter what the job description or who pays the salary and the rent, caring for cancer patients cannot be just another “government job.”

I know my son well enough to know that wherever he lands, he will be a leader, and he will strive for excellence and demand that others do so as well.  Give him a little time, and the government may never be the same!

This Be The Verse

 “Children begin by loving their parents; as they grow older they judge them; sometimes they forgive them.”   Oscar Wilde

 

I buried my mother on January tenth.  After a long struggle with dementia, she passed away in her sleep.  In the end, my father was too ill to attend a funeral service, so my sister and I had a small graveside ceremony in Aspen, Colorado where they have lived, loved, laughed and played for the last twenty five years.  She was buried according to the Orthodox Jewish tradition in which she grew up– wrapped in a burial shroud in a plain pine box.  This is the way that it is done—there are no fancy garments, no treasured jewelry, no viewing of the body and no silk lined coffin reinforced with steel.  Ashes to ashes, dust to dust, according to the Old Testament.   There is no headstone placed at the time of the funeral; that comes a year later, after God has had plenty of time to judge the deceased, to decide which way they should go.  Sadly, I had passed judgment long ago.  And yet, the sight of my mother’s tiny coffin (always a tiny woman, no more than ninety pounds when she died) being lowered into the grave next to my dead brother was almost more than I could bear.

I don’t do funerals well and I never will.  Despite the fact that I am very good at writing eulogies, I cannot and do not deliver them.  I told my younger sister this ahead of time:  “I don’t do funerals. You will have to speak.”  She asked me why.  I explained to the best of my ability that it has to do with the work I do in my everyday life as a radiation oncologist.  Most of the time, I am able to submerge those feelings of grief and sadness at what my patients and their families are going through and my rage at the unfairness of it all.  I shove it right under, bury it deep, don’t think about it and don’t dwell on it.  But going to a funeral, and generally speaking, I do not attend patients’ funerals for this reason, all of the emotions like oxygen starved divers push their way right to the surface, gasp for air, take a deep breath and come pouring out in an uncontrollable torrent.  The ghosts of every patient that I ever cared for and cared about surround me—they grasp for my hands and my legs, they perch on my shoulders and they whisper in my ear, “Let it go.  Let it all out.”  And I do.

I never got along with my mother.  I can say it now.  As an adult, I began to understand who she was, and why she was the way she was, and that in her own way, she loved me and I of course loved her.  I can even laugh about it, in my better moments—in the last lucid phone message she left me, she threatened to disown me and write me and my three children out of her will.  Actually, it was only two of my three children—there was one who was spared her wrath.  I saved that message on my cell phone for two years, and sometimes I would replay it just to hear her voice again, after she had become mute. Then one day I accidentally erased the message.  It’s just as well.  There are better memories of better days.

As my mother was lowered into her grave, I whispered, “I forgive you.” Rest in peace, Mom.

RITA SILVER SPIRA, September 11, 1931–January 7, 2013

You Can’t Go Home Again

“Look homeward Angel, now and melt with ruth,

And O, ye Dolphins’ waft the hapless youth”

 

In the fall of 1971, I entered Yale University as one of 250 freshman women, the third class of women to be admitted to a college still dedicated to the concept of graduating “1000 male leaders” a year.  I was seventeen and thrilled to be away from Texas and my parents. I wasted no time actually going to most of my classes, especially the 8 am conversational French class and the entirely uninteresting inorganic chemistry class which required a one mile trek up Science Hill.  When the weather turned cold, so did my dedication to chemistry and so ended my first premedical career.  By the end of the first semester, I had partied my way to earning barely passing grades in the classes I did go to, and a big “F” in the detested inorganic chemistry, which I ameliorated by groveling before the teaching assistant and swearing never to take another science class.  He passed me.  My parents’ response to my less than stellar performance was a typical Southern “You better straighten up and fly right or we will bring you right back home to the University of Houston!” And so I did.

When I graduated four years later I finally did go back to Texas for medical school, but the allure of those “bright college years” had not quite worn off—the brilliant if unappreciated professors, the gothic architecture, the endless “intellectual” conversations over cigarettes and alcohol which went late into the night and early into the morning, the snowball fights, the chess games played out on a human scale between the North and South Courts of Berkeley College, the dogwood and cherry trees blooming in the spring.  During my fourth year of medical school, I had the opportunity to do “away” rotations, the medical student’s way of testing the waters to see if a particular program might be a good place for an internship and residency.  In November of 1978, I chose to go back to Yale for my medicine “subinternship.”  During the days I roamed the wards of Yale New Haven Hospital, dutifully following my resident’s every command.  At night I huddled under an electric blanket in a spare room in the poorly heated medical student dormitory, a far cry from the hissing radiators of the undergraduate colleges.  I figured out very quickly that being an undergraduate at Yale was very different from being an intern in an inner city hospital where there was no film society or cabaret club to entertain you in the evening.  By the time applications were due, I opted out.

My own daughter graduated from Yale in 2006, and like her mother before her, entered medical school after a period of intense resistance to her life’s calling.  And like I did, so long ago, she is applying for residencies in Internal Medicine.  I told her, “Don’t bother applying to Yale, it’s not the same as being in college.”  My husband, Yale ’70, told her the same thing.  Kids don’t listen to their parents, and besides, she still has friends there.  She flew from Houston to Hartford yesterday and made her way to New Haven for interviews today.  I spoke with her tonight, and despite dinner at Mory’s, a quick stop into Atticus Bookstore Café and a mild gray cloudy day, she told me that our instincts had been confirmed.

You can sing “Boola Boola” all you want, and call yourself an “Old Blue”, but you can only be seventeen and full of dreams once.  Thomas Wolfe was right—you can’t go home again.

The Care At The End Of The Road

Seven months ago, in Carbondale, Colorado, staff at the skilled nursing facility where my mother had resided for over a year recommended that she be placed on hospice.  My mother has severe advanced dementia and can no longer walk, speak, feed herself or recognize her family members. As much as I know about hospice care for cancer patients here in San Diego, I knew nothing about hospice care in Carbondale for severely demented patients.  Although we had declared my mother DNR (“Do Not Resuscitate”) when she entered the nursing facility in January of 2011, my concern was that this meant that once she was transferred to the care of hospice workers, albeit in the same bed in the same facility, she would be left alone in soiled diapers to die.  She could not ask for anything, did not need any medications for pain or otherwise, and did not respond to questions.  I envisioned that hospice had more pressing problems to deal with—for example, cancer patients in severe pain or with debilitating shortness of breath or inconsolable family members. My father was convinced, but I was not.  I could not have been more wrong.

On November 12, the news broke in the San Diego Union Tribune that the San Diego Hospice, a not for profit highly respected hospice in our area, was being audited by Medicare.  The hospice had stopped accepting patients November 10, and there was a threatened layoff of 200 of the 870 employees.  Two programs—one for HIV/AIDS and one for the parents of newborns with life threatening illnesses who were not expected to survive, were halted immediately.  And what crime did the San Diego Hospice commit?  The audit focused on whether the hospice had been “too liberal” in its admissions.  You see, in order to qualify for Medicare hospice benefits, you have to be expected to die within six months.  If you are terminal by this definition, Medicare pays $172 per day for your care.  The thing of it is that all of the patients admitted by the San Diego Hospice did not die on schedule.  The hospice spokeswoman was quoted as saying, “We put the concept of patients and what we were able to do for them above what the guidelines are.”  A day later, both the physician CEO and the CFO resigned.  Ironically, the reason that the hospice is being penalized is perhaps that the care was just too good—that by taking away fear, and providing excellent pain management and emotional support—the patients lived longer than the expected six months.  And there is no comparison “other side of the coin”—what would these patients have cost society if they had continued on active chemotherapy or radiation, or had expensive acute care hospitalizations for infection or pain management?

Medicare has been offering a hospice benefit since 1982.  In 2000, 513,000 patients took advantage of the benefit.  In 2010, 1,100,000 patients went on hospice.  The cost to Medicare was 3 billion in 2000, and 13 billion in 2010.  Do the governing bodies of Medicare truly think that this is because hospices all over America are plotting to defraud the government?  Personally, I think not.  While there is Medicare fraud in all segments of the medical and hospital businesses, I prefer to think that the increase is due to the aging of our population, the acceptance into hospice of more Alzheimer’s and other chronic disease patients, and the growing level of comfort among physicians to consider hospice when there is no chance of a reasonable recovery for their patients. Undeniably, there has been a sharp increase in the number of for profit hospices nationwide, from 34% in 2001 to 55% in 2011, causing alarms to go off and triggering Medicare audits across the country.

A week ago my father called me to say that the nursing facility in Carbondale had no other choice but to take my mother off of hospice.  The volunteers who came in to read to her, despite her lack of response, the massage therapists, the bright smiles and the occasional little gifts of lotion and a flower—are all gone. My mother, because of the excellent care she has received at the nursing home and from the local hospice, had simply failed to die on time of a bedsore, a urinary tract infection, or aspiration pneumonia.  My father is lucky—if he chooses to he can continue some of the services that hospice was providing by paying for them out of pocket.  San Diego Hospice closed the doors of its 24 bed inpatient facility yesterday.  I wonder if the patients who were being cared for by the wonderful doctors and nurses and staff there will be so lucky.

The Purple Bathing Suit

“April is the cruelest month”  T.S. Eliot

Although I have spent my professional career battling cancer, cancer is not the cruelest disease.  Tonight I was looking through old photographs that my father had taken to a print shop to be scanned on to a disk.  He sent me a copy, but I had not had much time to look at the pictures.  When I finally did, last night, I was disappointed in the sloppy job that the print shop or camera shop had done—photos were scanned in upside down, backside forward, reversed, random and unlabeled.  There was no chronology or logic—it was just willy-nilly, get the job done.  And I am sure that they charged him a lot of money for that service.

Looking again tonight, there is joy and sadness in those old and out of order family photographs.  My sister smiles as she receives her diploma from Stanford.  My little brother, now long dead of a drug overdose, blue eyed and perfect as a three year old sitting next to my 5 year old pony-tailed self.  Me, in my favorite “car-coat” as my mother called it, felted and toggle tied and warm.  I remember that time it snowed in Houston—I was in first grade and I had pretended to be sick to stay home from school and then it snowed, beautiful white fluffy snow, and my Nana would not let me go outside to play because, of course, I was “sick”.  By the next day, the snow was gone.

Of all of those old pictures, there is one that jumps right off the screen at me.  It is a photograph of my mother, just graduated from college, in a purple skirted Jantzen bathing suit.  I know it is a Jantzen because I remember the logo from my childhood—a little diver with a swim cap covering her head, doing a swan dive into a pool, ubiquitously sewn onto every Jantzen suit of the 1950’s.  My mother is at the beach, sitting demurely on a beach towel that appears to be engulfed by a foamy wave which creeps just past her delicately crossed legs.  She is brunette, petite, beautiful and smiling.  She is 21, and her whole life is before her.  I like to think that my father, deeply in love, took that picture just before they married.

Sixty years later, my mother is a two time cancer survivor.  She was treated for breast cancer in 2001, and then for a disease of the blood, Waldenstrom’s macroglobulinemia, which involved her brain in 2005.  At that time she received chemotherapy directly into her central nervous system.  Five years later, in 2010, she began to lose her memory, and her will to walk, and to speak, and to eat.  Now, in 2012, she has advanced dementia.  She does not recognize me or my sister, and my father dutifully visits her at least every other day in her nursing home, where she receives excellent care, completely dependent on others for her survival.  Because her nurses are so attentive, she has not had a life threatening pneumonia or urinary infection or infected bed sore which would cause her demise.  And so, we wait.

I never got along very well with my mother, but despite that I wish fervently that she could be herself again, older and wiser, waiting out the tide in her purple Jantzen bathing suit. Cancer is not the cruelest disease—dementia is.   I am waiting to see which shoe will drop for me.

You Play Hardball, Kid

Whenever I have a female medical student, as I did today, I always catch them looking at a framed cartoon on my desk and smiling.  The cartoon is an original hand lettered Doonesbury strip by Garry Trudeau, and it is indeed larger than life, each section about five by four inches.  If you look closely, you can see where Garry used white-out to make small corrections to give the strip that understated comic timing that Doonesbury  is so well known for.  When that particular strip came out in the Boston Globe in 1988, I knew I had to have it.  Since my husband was an old college buddy of Garry’s, he wrote to him and asked him if he would send it to me, and Garry obliged.  At the bottom of the strip, Garry wrote  “Courage and good luck!”  Twenty four years later, it is one of my most prized possessions.

The strip consists of four frames laid out horizontally in squares.  In the first frame, Joanie Caucus, mother and career woman, has picked up her daughter from daycare, and they are in the car together.  She says, “How did day care go today, honey?”  The kid answers, “Okay.”  In the second frame, they are still in the car, and the landscape has changed slightly.   The kid says, “I was crying because all the other children went home and you were late again, but Mrs. Wicker gave me oreos and let me watch cartoons and I called her “Mommy” by mistake.”  In the third frame, they are still in the car and you can see the long arm of a stoplight over head.  There is complete and utter silence in the car.  In the fourth frame, Joanie says, “You play hardball kid.”  The kid says, “Green light, Mommy.”

At the time, I had two children and was contemplating a third, who came along three years later.  I had a full time job taking care of cancer patients.  In college a zealous new wave of women’s studies professors had reassured and brainwashed the 250 women in my class (perhaps in defiance of the alumni who insisted that, yes women could attend this formerly all male bastion, as long as the college continued to graduate “1000 male leaders” per year).  They told us that we could “have it all”, and we believed them.  So off we went to medical school, and law school, and graduate school and business school to heal the sick, comfort the disenfranchised, teach another generation of women, and in some cases, make a fortune.  And many of us married, and had children.

People say to me now that my children are grown up, “How did you DO it?”  The answer is, I have no idea how I did it.  A lot of it is a blur. At this stage in life, I get exhausted even thinking about the fact that I was always rushing to work, rushing home, rushing to get dinner on the table, rushing to help with homework, and then on the weekend rushing to attend as many horse shows, soccer games, wrestling matches and do as many loads of laundry as I could cram into a 48 hour period.  My girlfriends, similarly over extended, and I would joke that “We need a WIFE!”   I had some serious “Bad Mommy” moments, which my grown up kids remember in excruciating detail, and will recount at holiday dinners, especially if they need money.  They STILL know how to play hardball, that’s for sure.

Sometimes a female medical student reads that old Doonesbury strip, gets to the end, clears her throat nervously and then asks me, “Would you do it all again?  Is it possible to have a full time career AND raise a family?”  The answer is always ” yes”, despite the homework that didn’t get checked, the house that didn’t get cleaned, the PTO meetings missed, the dog that peed on the carpet,  the late pick ups, the early drop offs, the hurried kisses goodbye, the need to see that one last patient having difficulties in the middle of a blinding snowstorm, the fatigue and always, the guilt.  And I will tell that young woman that when she is on her knees by the bathtub at the end of a very long day with a three year old splashing water in her face, and that toddler slips up and calls her by his nanny’s name, she need not worry about it quite so much.  Trust me, they do know who their mommy is.

In spite of me, or perhaps in some small part because of me—the kids are all right.