A Different Kind of Mask

“I want them to live again to the point where pain becomes art.”

Lawrence Durrell,  “Justine”

I have always loved masks.  Near sighted likely from birth, a fact which was discovered significantly later, I never minded stumbling around our neighborhood on Halloween, my already deficient depth perception further stunted by my Bugs Bunny mask.  To don a mask was a chance to become someone else,  and as I grew older my disguises became more exotic—a gypsy fortune teller with gold hoop earrings in high school, a Turkish harem girl in college.  My imagination, fueled by the old stories of the Venetian Carnivale dating back to 1162, knew no bounds, and I secretly dreamed of a masked ball where I would glide gracefully and soundlessly, recognizing and being recognized by a handsome prince, by touch and scent alone.

 

In 2002 I took the occasion of my daughter’s graduation from high school as an opportunity for us to visit Venice, and more specifically, the mask shop known as La Bottega dei Mascareri at the base of the famous Rialto Bridge where a lively market persists to this day.  Elizabeth Barrett Browning may have been speaking metaphorically when she said, “the soul’s Rialto hath its merchandise,” but I was subject to a more literal interpretation.  I wanted to buy a mask from the famous brothers Sergio and Massimo Boldrin, who fashion papier mache masks in the old Venetian tradition.  I picked out a good one, made by Massimo himself, and given the history it depicts—perfect for a doctor.

 

The mask is larger than my face and flat, hand painted with a crackle glaze to look very old, and it pictures a man in medieval clothing dancing around a bonfire,  wearing the peculiar bird beaked mask known to physicians of the plague years.  The beaks were stuffed with medicinal herbs thought to ward off the dread disease.  In just one scene, the mask depicts the horror of bubonic plague—the bird beaked man, the fire to burn the contaminated bodies and clothing, the “ring around the rosie” cheeks of the afflicted.  With some difficulty, I brought my prize home in a suitcase, only to find that it gave me nightmares.  Today it sits on a bookshelf in the study off our garage.   I can’t have it in the house.

 

My patients with head and neck cancer are all too familiar with the concept of the mask, but for them the mask has a different significance.  Fashioned of a material called Aquaplast, the mask starts as a thick sheet of perforated plastic.  Warmed in a hot water bath, the material becomes soft and pliable, and is stretched over the cancer patient’s head and shoulders where it shape shifts to appear like a woman’s fish net stocking, but without the softness.  The mask hardens to become a rigid immobilization device which is bolted to the treatment table.  In my field, precision is everything and the mask, custom made for each patient, allows the radiation oncologist to accurately target the cancer while sparing critical structures such as the spinal cord and the eyes.  Not for the claustrophobic, the mask is a temporary prison for seven weeks of daily treatment.  At the end of treatment, each patient is offered the opportunity to take his or her own mask home.  Most actually do.

 

Today at the biannual Multidisciplinary Head and Neck Cancer Symposium in Scottsdale, AZ, I saw something quite extraordinary.  In order to assist patients financially with these cancers, an organization out of Washington DC called 911 4 HNC mounted an exhibition called “Courage Unmasked”  (www.courageunmasked.org).  Cookie Kerxton, an artist who was treated for head and neck cancer herself enlisted other artists to transform radiation masks into works of art.  The results, several of which are on exhibit at the meeting, are objects of exceptional beauty, turning human suffering into inspiration and hope for others.

 

At the meeting, volunteers were handing out free posters depicting forty two of these beautiful masks.  When I get home, I will have my poster framed and I will hang it in the room where I examine my head and neck cancer patients.  I am hoping that the bright colors of the beautiful masks will lessen their fear, and transform their pain.  There is indeed great progress in the treatment of their cancers.

The Good Books

Where I come from, when most people refer to The Good Book, they are referring to the Bible.  This is not true for my father, because to him, the Good Books are something else entirely.  He describes a scene early in his career as a plastic surgeon, when he had taken his doting mother to see his new office. Coincidentally, a lovely thank you note had just arrived from one of his patients.  He read it appreciatively and passed it on to my grandmother, so that she could “kvell” over her son the doctor even more, as if that were possible. His secretary, having a penchant for scrapbooking and noticing the mutual positive reinforcement going on, decided that from that day on, when Dad received a thank you note or letter of appreciation, she would put it in a scrapbook, which he anointed as his “Good Book.”  By the time he retired from full time practice at age 75, he had accumulated a series of five very thick Good Books.  And he advised me to do the same.  He said that when he felt tired or depressed, he would read his Good Books and feel revived.

I’ve never been as organized as my father, who keeps meticulous files on everything that interests him, to this day.  Nor, as a young female physician just starting practice in the early 1980’s, did I ever have a secretary that I would DREAM of asking to “scrapbook” for me, much less bring me a cup of coffee.  But I had many appreciative notes from patients, and I read and treasured each one.  I put them in the top drawer of my desk, and would reread them when I came upon them while searching for a highlighter, or a directory of local doctors.  And when I left that particular job, or that particular city, or that particular office, I would read them one more time, remember the patients who wrote, and let them slip into the recycle bin.  There’s only so much you can take with you, apart from the memories.

Exactly two weeks ago, I received a letter at my office addressed to me personally.  The letter originated in Bradenton, FL where I know no one. I did not immediately recognize the name or the return address, but I opened it and read:

“Dear Dr. Fielding:

It has been 25 years since I completed treatment by you for Stage 4 Hodgkin’s Lymphoma.  I came to the Leonard Morse Hospital from Turkey with a tumor in my chest.  I was treated by Dr. Jao and referred to you for radiation therapy.  My treatment included radiation therapy and chemotherapy from November 1987 to October 1988.

I will always remember that when I would meet with you during my radiation therapy I usually felt “lousy.”  You would come into the exam room and tell me I looked great.  Your positive and caring manner always lifted my spirits and renewed my confidence that I would overcome Hodgkins.

I retired in 1995 and have enjoyed good health and my retirement in Florida.  Your caring and medical expertise saved my life and I am forever grateful.  I thank you and wish you a Happy New Year.    Sincerely,  RB.”

The letter was accompanied by a photograph of my patient and his wife, riding gilded carousel horses on a merry-go-round, hands held high to reach for the golden ring.  They appear to be very happy.

I have been thinking a lot lately about retirement myself.   There are places I want to go, people I want to see, and things that I want to do while I am still healthy enough to do them.  When I got home the evening I received that letter, I showed it to my husband who said, “I bet you won’t want to retire now!”  I thought about it for a minute and said, “No, you are very wrong about that. That letter made me cry, but not because I want to continue to do radiation therapy forever.  It made me cry because it made me feel that what I have done since I graduated from medical school in 1978 was worthwhile.  That it MEANT something. That I have not wasted my time.”

To my patients who have taken the time to write over the years—you have no idea how much that means to us doctors.  To my daughter, struggling through a tough internship year in Boston, and to my medical students—stick with it.  Thirty years from now you will be very happy you did, with or without some Good Books of your own.

When Age is a Relative Thing

I remember when I was a medical student and an elderly patient would be admitted to the surgical service through the emergency room with a bowel obstruction, or a lung cancer, or blockage in the coronary arteries so severe that only a coronary bypass could save him.   The students and residents would gather around the attending, and debate the merits of operating on the patient, or “keeping him comfortable”, ensuring certain death.  One of the things I remember hearing, typically from the mouths of those advocating for aggressive management was always, “But he’s a GOOD ninety!”  Meaning, the patient may have been ninety years old, but he looked younger, and had no competing medical problems, and had been living independently and enjoying life.  As I grew in my radiation oncology career, and medical students and residents would debate the same with me, one of the things I always try to remind them is, “There’s nothing like radiation and chemotherapy to turn a GOOD ninety into a BAD ninety really fast.”  It’s the truth.

So when I returned from my mini-vacation at the dog show in Palm Springs at the beginning of last week, the first thing I did was check my schedule to see if any of the patients who were seen in my absence were on the simulation list for treatment planning so I could review their history and physical exams.  I found one unfamiliar name, so I picked up his chart.  It turns out, this man is an 86 year old retired figure skater, still active as an international figure skating judge, who had recently been diagnosed with an early stage intermediate risk prostate cancer, Gleason grade of 3+4=7, PSA of 9.  He had come in under duress to see one of my partners because, you see, he didn’t WANT radiation therapy.  He wanted a prostatectomy.  Now, in my world, and in the world of my referring urologists, 86 year old men do not get prostatectomies, robotic or otherwise.  There is too much risk of fluctuation of blood pressure and bleeding, and consequently heart attack and stroke. Dr. Donald Skinner, retired Chairman of Urology at the University of Southern California used to say, “I won’t even operate on a 70 year old man, unless he brings his 90 year old father to the consultation with him.”  This patient’s choices were watchful waiting, now known as “active surveillance”, hormonal therapy, or radiation.  After a long discussion with my partner, he chose radiation therapy.

When I walked in the exam room to get the patient to sign a consent before we started, I was fully prepared to try to convince him that at his age, it wasn’t likely to make a difference in his overall life span to be treated for this early stage prostate cancer.  What I wasn’t prepared for was a man who looked twenty years younger than his stated age, in great condition, holding hands with his equally attractive wife, also a retired skater.  My speech about the treatment being unnecessary “at your age” went unsaid.  Instead, I gawked and said, “Ice dancing or pairs?”  From then the discussion veered from the upcoming Winter Olympics, and then to the fact that he grew up in Seattle and came to San Diego on vacation, whereupon he discovered that there was a place where it didn’t rain every day and decided to stay. He was twenty when he met his fifteen year old bride to be at a skating rink in Orange County.  He was tall, with an elegant physique. She was petite and a beginner. He smiled at her as he told me the story of the “best pick up line EVER!”  He found himself next to her at the edge of the rink and said, “What are you doing there, standing in a HOLE?”

Perhaps it was not the best pick up line ever. But his vivacity, vitality and joie de vivre certainly bought him a definitive course of intensity modulated radiation therapy.  After all, he’s a GOOD eighty six.

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!

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.

Just Trying To Keep The Customer Satisfied

The institution that employs me is very bullish on customer satisfaction.  Having come from a fourteen year stint in private practice before I came back into the University fold six years ago, the little things that make a practice run smoothly come naturally to me. Patients are typically seen within a week of the consultation request—same day if they are in an emergency situation.  My front office staff actually answer their phones and my nurses and I return phone calls from patients, even if we have to do it after regular business hours.  The physicist and dosimetrist make sure that the radiation plans are optimal and that each plan undergoes intense scrutiny and quality assurance before the patient ever lies down on the table. The therapy staff work hard to make sure that the patients are treated with dignity and on time, at an hour which is convenient to their schedules. Despite my natural inclination towards dawdling and chatting, I try to keep to my schedule.  At the end of a patient’s treatment course, I personally ask him or her to fill out our patient satisfaction survey because the University bases my staff’s bonuses on the results. So far, I have never been disappointed.

Recently we treated a patient who had some significant physical challenges.  He was extremely overweight, with severe arthritis in his hips and knees.  In order to get to the “vault” to be treated, he had to be wheeled in a wheelchair, which required the coordination of several people since our doors lock for security.  Each day, a therapist would come up the elevator to get the patient, and our receptionist would hold open the door so that it would not close and bang into the wheelchair.  Time changes were made in his schedule to accommodate his other numerous appointments.  His wife partook of our Halloween potluck party and shared tidbits about her day with our front office staff.  His handicapped parking space was never occupied, and he never waited for treatment.  To all outward appearances he and his wife were treated like members of our family.  At the end of his treatment, the results of their patient satisfaction survey were eagerly awaited.  We knew it was going to be spectacular.  And it was.  On a scale of 1 to 5, with 5 being the best, each question was answered successively with a 5.  Was it easy to get a convenient appointment?  5.   Were you welcomed in a friendly manner? 5. Was the center comfortable and clean?  5.  Did the physician clearly explain the treatment objectives to you?  Again, 5, of course.  And so it went.  Until we came to the “Comments” section at the end.

Dated 11/15/13, the comments were written with perfect penmanship and read as follows:  “We thought your pink wall might be better if it was more of a rust color, to match the chairs and vases.  The color that it is just didn’t seem to go with the room.”

I’ll probably run out and pick up the paint chips at Home Depot this weekend.  We’ll get right on it!

The Face Of Hope

With special thanks to Dr. Dingle Spence.

Thirty three years ago my husband and I went to Jamaica for a belated honeymoon.  We got married on the last weekend of my internship year, and immediately flew back to Boston for me to start my second year of internal medicine training.  Seven months later in the dead of winter, we flew to Jamaica to a lux resort in Ocho Rios where I spent a blissful week drinking sweet rum laced drinks and sleeping them off on a white sandy beach where the water was warm and turquoise, a far cry from the sodden gray snow banks of Massachusetts. We managed to get into the town once, long enough for me to buy a wood carving of two lovers kissing, made from Lignum Vitae, the national tree of Jamaica.  The sculpture still sits in the window by my front door.

Two weeks ago I finally had a chance to go back to Jamaica, as the invited guest of Dr. Dingle Spence, radiation oncologist and palliative care/oncology specialist at the Hope Institute, a small cancer hospital run by the Jamaican Ministry of Health.  I was there for two working days, spending the first at the large urban Kingston Public Hospital, a 500 bed hospital which houses the only government funded radiation oncology unit on that side of the island.  In the morning we did teaching rounds with the ear, nose and throat surgical team, along with the residents and medical students.  Patients and their families waited outside our conference area and were brought in one at a time, to be examined and questioned by the team such that each had our full attention. Several patients had advanced disease, and I learned that one major problem is that the pathology department is overwhelmed with cases from all over the Caribbean, and that oftentimes it takes two to three months to get a pathologic diagnosis.  By that time, many cases have progressed so far as to be incurable with the resources at hand.  Still, the dedication of the team, and in particular that of the head surgeon Dr. Natalie Whylie was very apparent and heartfelt.

That afternoon, I had the opportunity to see several patients with Dr. Spence—all with various forms of advanced lung cancer requiring radiation to palliate symptoms of shortness of breath, and hemoptysis—coughing up blood. Simulation at Kingston Public Hospital is done the old fashioned way—by taking an X-Ray with markers on the skin in the approximate area of the tumor, then shifting the “field” to match the tumor accurately. On that day, all of the X-ray machines in Radiology were in disrepair, and non- functional.  We escorted the patients to the Emergency Ward, where the radiology tech told us that the ER was too busy, and that we would have to come back later.  All three men, quite ill from their cancers, took a seat in the waiting room without food, water or complaint.  Three hours later, when we were called back to do the simulations, they were still there.  We simulated each in turn, then escorted them back to the radiation department, where they waited some more until it was their turn to be treated on the Cobalt machine later in the evening.  The therapists work 12 hour days on that machine, and we left before those patients had their turn.  After a short visit to the private radiation oncology facility in Kingston, where cash paying patients can be treated on a linear accelerator, we returned to Dr. Spence’s home high up on Jacks Hill.

The second day was spent at the Hope Institute.  Founded in 1963 by the Jamaica Cancer Society, the hospital has grown to 45 beds, for patients receiving chemotherapy and radiation and for end-of-life hospice care.  Since patients frequently travel long distances for cancer care in Jamaica, beds are often used to house patients for prolonged courses of treatment.  The wards had clean crisp linens, and the smells of fresh cooked meals in the large recently modernized kitchen wafted through the rooms.  The nurses had an air of easy familiarity with their charges and the atmosphere was upbeat, despite the fact that many of the patients were gravely ill.  I was asked to lecture on several subjects, and given an air conditioned auditorium and three hours which I doubted seriously that I could fill.  As it turned out, the nurses, therapists, residents and students who attended felt comfortable enough to ask questions, and a home cooked midday meal helped pass the time quickly.  My old Resident’s Manual, given to me at Massachusetts General Hospital in 1982 and carried with me for over thirty years as a souvenir, was a major source of interest, because it contained information pertinent to the treatment of patients with the equipment that is available to cancer patients in the public sector of Jamaica, equipment that has long been abandoned or replaced in our own country.

The thing that struck me the most about my experience in Kingston was the fact that despite the human suffering that I saw, in a country short on both technology and morphine, the patients remained hopeful and even cheerful in the face of extreme adversity.  I asked my host, Dr. Spence, how this could be, coming from the land of complainers, myself chief amongst them. She replied, “Most people in Jamaica have a deep faith.  They truly feel that they are in God’s hands, and what will be, will be and only God knows best.”  As I watched her move from bed to bed, giving comfort to the dying with only her soft voice and her cool touch upon their feverish foreheads, I realized something that sometimes I have forgotten in my excitement over the technology that I have available every day, without even thinking about it.  In the end it’s not about the technology at all.  For the most desperate among us, it’s about faith, and about love and human kindness.  For this reminder, I will be forever grateful.

When Life Gives You Lemons

When I was about ten years old, swimming on a Texas swim team, I remember hearing that the child of one of the local coaches had been diagnosed with leukemia.  The idea of a kid dying of an untreatable disease was so foreign to me that I am sure that I have blocked out most of the details.  I do know that the child died, and it didn’t take very long.  In the fifty years since, the landscape of childhood cancer has changed dramatically for the better.  Today, most children diagnosed with acute lymphocytic leukemia—the most common type—survive.  But in the past, we oncologists significantly underestimated the cost of that survival.

For the last six months, I have been taking care of one of the earliest survivors of childhood leukemia.  In her late forties now, she was treated with life-saving combination chemotherapy when she was six years old.  A couple of years later, she relapsed with leukemic cells in her brain and spinal cord, and received cranio-spinal irradiation—radiation therapy to her entire brain and spinal cord, a toxic treatment associated with short stature due to reduced growth of the spine, lowered IQ, and a depressed immune system.  Again she survived, and grew up to be a teacher of disabled children—the ultimate in “giving back.”

In 2005, she was diagnosed with breast cancer, likely a consequence of the radiation exposure she had as a child.  She underwent a mastectomy, and then did well until last fall when she noted a lump in the medial aspect of her breast reconstruction.  A staging work up revealed a benign appearing brain tumor which, again, was likely a late effect of her brain irradiation.  Since she had no symptoms from her brain tumor, her medical oncologist forged ahead with chemotherapy for the breast cancer, followed by removal of her reconstructed breast and its residual cancer, followed by radiation to her chest wall and lymph nodes given by me.  All of this she bore without question, without complaint.

I saw her in follow up on Friday and she was doing well, but she knew she needed to undergo more testing for an enlarged and nodular thyroid—possibly a thyroid cancer, also radiation induced.  She also needed to have a follow up MRI for her brain tumor, to be sure that it is not growing rapidly.  She was matter of fact about the inconvenience, not to mention the anxiety, of having multiple additional tests and procedures over the next few weeks and months.

I am continuously amazed by her grace and equanimity.  I said to her, “You are my hero.  How do you just keep going, day after day, month after month, year after year, dealing with cancer, one cancer after another?”  She said, “When I was a child, dying was NOT an option.  My parents never even mentioned the possibility, so I was never afraid.  I just did what I had to do.  Now it’s the same thing—I know that this is the price I have paid for the wonderful life I have led.  I just keep putting one foot in front of the other, one day at a time.  I know that I will be okay.”

Here’s the thing about oncology folks:  It puts everything else into perspective.  If this brave woman can take the lemons life has given her and make lemonade, so can you and I.   This is the crux of the matter; this is what has kept me going in this field for over thirty years.  If this woman considers herself lucky, so should we all.

Who We Really Are

When I was a resident in radiation oncology, I thought I already knew a lot about medicine.  After all, I had just completed an internal medicine residency, and had taken and passed my boards.  Needless to say, I was more than a little bit irritated the first time a patient “coded” in the radiation therapy department and I was shoved out of the way by the intern on the code team.  After all, he was an internal medicine intern at the World’s Greatest Hospital, and I was a lowly radiation oncology resident. My protestations of “I can HANDLE THIS!” were lost in the general hubbub of excitement and confusion surrounding a cardiac arrest.  The patient survived, despite my bruised ego.

I found out very quickly that I didn’t know much at all—in fact, I didn’t know how to write a proper history and physical.  On my first rotation, my attending corrected my very first sentence, stating emphatically that “Mr. So and So is NOT just an 86 year old Caucasian male who presents with lung cancer. He is an 86 year old retired firefighter and grandfather of eight who presents with lung cancer.  There is a big difference.  You will see!”  From that point on, I was charged with adding descriptors beyond the age, sex and race of my patient so that I would know that patient as a PERSON, and not just as a disease.

My daughter is going through her internal medicine residency right now.  I remember how easy it was to de-humanize a patient by calling her “the myocardial infarct in ER bed 8”, or the “renal failure in 222”, or the “nursing home placement on the 9th floor”.   If we call them by their disease, they cease to be the living breathing mother of high school age twins, or the father of a disabled son, or the principle of the local school for the deaf.  They’re just diseases, to be treated and discharged, or “buffed and turfed” in the old House of God parlance.  It’s much easier to be detached from a disease, than from a human being that one might just have something in common with.

Because of my first radiation oncology attending, to whom I will be forever grateful, I’ve made a point to pay attention to the person, and not just the disease.  I teach my medical students the same thing—that it’s not enough to just copy and paste the social history—the history of whether the patient is married, has a profession, has children, smokes or drinks alcohol or takes her religion seriously.  I try to learn about the person, and when I do, and convey that to my entire team of physicists, therapists, nurses and front office, I know that the patient gets better care.  It’s just human nature to empathize, and sympathize, if we truly know the human being behind the diagnosis. And it’s especially true for the difficult patients, the mean and angry ones, the ones we would prefer to dismiss.

But sometimes I slip up.  Recently I treated an elderly man postoperatively for rectal cancer.  He was a quiet elderly gentleman, but his son, a tech writer, made everyone in the department miserable with his demands for his father.  I never asked the man what he used to do, before he was eighty six with rectal cancer.  But another one of my patients was a little more curious.  He and the old man were side by side in the waiting room day after day of treatment until finally, the younger man asked me, “Where is Mr. __ from?  I can’t place his accent.”  I said, “I don’t know—I suspect he might be German but I never asked.”  So I did ask.  And was surprised to find out that my elderly patient was Israeli, born in 1925 in what was then Palestine. A true “sabra.”  He grew up in the Holy Land to become one of Israel’s foremost songwriters.  In fact, they still play his songs in Israel and recordings are available on YouTube. And I would never have known that if another patient had not cared enough to ask.

When you and I get sick, as we almost certainly will, we should all hope that our histories state who we really are, and that our admitting interns and residents care enough to ask.  They will be better doctors if they do, and we will get better care.