The Glass Is Half Full

A couple of weeks ago my nurse came to me with a request for a consultation.  Since our schedule has been packed full lately, she’s been asking me where I can squeeze patients in.  She said, “I’m not sure about this one—he says you treated him twenty years ago and he wants to see you.  But there is no new pathology so I don’t know how urgent it is.”  I looked at the consult request and did not remember the patient but there were several handwritten jottings on the cover sheet from the referring physician that listed phone numbers and beside them, “no answer at this number X 3,” and “Dr. Fielding hasn’t worked here since 2004.”  Apparently some effort was made to track me down, since I have changed jobs a few times in the last twenty years. I said, “Well get the latest information on the patient and put him in the open emergency slot a week from Friday.”

So Friday came yesterday and this patient was scheduled at one o’clock.  I like to review the charts before I see new patients, so I picked up the chart during a hurried lunch and read through it with a growing sense of recognition, and no small amount of dread. The man had been treated for advanced head and neck cancer back in 1994.  He had presented with cancer on the lateral aspect of his tongue, which was excised by his surgeon.  Six months later, he recurred both on the tongue, on the soft palate, and in his neck, with a large tumor wrapped around his jugular vein.  His surgeon tried, even sacrificing the large vein, but he could not resect all of the cancer and the patient was referred to me for post-operative radiation therapy.  Given that the man was only fifty one years old, his medical oncologist made the decision to give him chemotherapy along with the radiation, a decision which was considered quite radical at the time.  Treatments for head and neck cancer back then were crude by today’s standards, and fraught with complications, and this man had had all of them.

By 2000, he could no longer swallow, and his esophagus had to be dilated.  This happened again in 2008, and another procedure provided relief.  His saliva never fully returned after treatment, and so in 2012, plagued with tooth decay, he began a series of extractions, augmented by hyperbaric oxygen therapy to prevent osteoradionecrosis of his mandible.  Unfortunately this did not work, and he ended up having a portion of his jawbone removed.  A year ago, he began to have a new issue—when he tried to swallow the food was going down “the wrong way” and causing him to choke, resulting in several episodes of aspiration pneumonia.  It was becoming hard for him to go out socially, and enjoy a meal with friends and family. His carotid and vertebral arteries were narrowed, putting him at risk for stroke. Multiple recent studies showed no evidence of recurrence of his cancer, but there was scar tissue in the back of the throat which prevented the epiglottis from closing over the trachea when he swallowed.  These were the things I read in his chart before I saw him, and I anticipated that our session together would be an angry one.

Tall, older and thinner than I had last seen him, the patient greeted me with a huge hug.  His wife smiled warmly.  As we sat and talked in our sunny consultation room, he described his current difficulties and told me that his surgeon had referred him back to me for electrical stimulation therapy of the throat muscles, which might help his aspiration.  Our institution has an entire department for the rehabilitation of head and neck cancer patients.  I groped for the right words to say to this man who had suffered through complications which are rare by today’s standards of care.  I apologized profusely, and explained that now we have better ways of shielding normal tissues to spare patients the terrible late effects of treatment.  I told him I would be happy to put in a referral to our swallowing and speech rehabilitation specialists.  He looked at me in surprise, and said, “Doc, I didn’t come here for that.  Dr. M (the surgeon) already put in the referral. When I found out you work here, I came to say thank you.  I was fifty one when I was told that my chances of survival were 10 per cent.  Now I’m seventy one years old.”  He squeezed his wife’s hand and said, “We’ve traveled the world together.  We’ve seen our grandkids graduate high school.  We’re going on a cruise to San Francisco next week.  Yeah, I’ve had my problems but we’re still having fun!”

Some folks are just “the glass is half full” kind of people.  Having always thought of myself as one of them, I’m surprised it took me a whole consultation to recognize that in my patient. Taking care of cancer patients has always been a good way to remind myself that my own life is not so bad.  Lesson learned, again.

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.

The Wisdom of Youth

In the spring of our freshman year at Yale, my roommates and I were shocked to open the Sunday New York Times, so fashionable at brunch in the dining halls, and see an article written by one of our very own classmates in the Times Magazine.  Called “An Eighteen Year Old Looks Back on Life,”(http://www.nytimes.com/books/98/09/13/specials/maynard-mag.html)  the autobiographical essay captured the angst of those of us growing up in the 1960’s, and made the author Joyce Maynard famous.  So famous in fact that she caught the attention of reclusive author J.D. Salinger who began a series of correspondences with her that culminated in her leaving Yale to go and live with him, when she was nineteen and he was fifty three.  Every so often, a kid surprises you.

And so was I surprised a week or so ago when a good friend of mine from medical school sent me his son’s speech delivered as high school valedictorian of his graduating class.  I wasn’t prepared to be impressed.  After all, I had just heard commencement speeches delivered at my daughter’s graduation ranging from her class president glibly and with great flair comparing a medical career to a marriage, to Harold Varmus, the Nobel Laureate and current Director of the National Cancer Institute speaking about the role of the physician in shaping society and public policy.  Isn’t every parent proud of their child who graduates first in his class in high school?  I certainly would have been, had any of mine had that honor.

Since my friend’s son’s speech has not made it into the New York Times, at least, not yet, I asked permission to share it here.  I hope that you will enjoy it as much as I did.  Here it is:

“I had some trouble finding something valuable to say. I fished around, and ultimately, I gave up. I decided instead that it might be easier to babble about the sort of stuff I usually babble about, thinking that would be easier. Two people, 500 people…

Something I think about quite frequently is this concept of a zero sum game. It’s a game in which each player has either a positive or negative number of points, and all the players’ points sum to zero. So, for everyone that wins, everyone who succeeds, someone else has to suffer. There are a lot of these games going on today. Locally, nationally, and globally.

It used to be that everyone was playing these games. 1 human survives, 1 pig-beast becomes food. And of course, over time, these became human sacrifices. We were introduced to the most tragic and relentless of these games, war. One player wins, another loses…

But we find that if we look around, we see a different kind of game. We see games with positive sums, even with increasing sums. Not only does everyone benefit, but the benefit increases over time. Of course, I want to talk about technology. I want to talk about Quinine and Smallpox vaccine and Magnetic Resonance Imaging: Remarkably ingenuitive solutions to seemingly intractable problems.

But I would be lying if I told you that art, and literature, and history, and every other form of creative/analytical human endeavor weren’t included too. They are. They produce information, interpretation, and commentary which is crucial to our collective mental health (it’s no coincidence that great social revolutions are invariably coupled with revolutions in these fields).

As it turns out, the actual field is not particularly important. What is important is what this work represents. It is evidence of a collective endeavor to create, to project the imaginations, designs, interpretations, and realities that exist in our minds onto the world around us. We are all inconceivably powerful creatures, although we might not believe it.

The point is this. We can look at a zero sum game and ask why, and inevitably someone is going so sit us down and tell us that that’s just the way it is: the way it has to be. What we don’t realize is that we have the power, the enormous cosmic influence, to say no. We all make the rules. We are not bound into bad games because we can create alternatives, we can refactor, reconfigure, regenerate.

I’m not a good person to take advice from. Those who know me have discovered this… empirically…What I will say to you guys is that you must bear all this in mind. If you find a bad game, make a better one, whatever field you find yourself in.

You don’t have to worry about being successful (capital S), wealthy, famous, and so on. The only thing you have to do is to open your mind to the mutability of your reality, and start hacking. Let love be your guide and your mind, your hand.”

Where Has All The Good News Gone?

 

Occasionally, something I write gets picked up on another of the “social media” outlets, and as with this blog, the responses I get are truly appreciated and provide me with insight into others’ points of view.  After my essay about the tragedy of Newtown, CT last Friday night, one reader responded:

“ I wonder why we don’t have as many joyous moments to recall as tragic moments. The tragic moments can bring us together and help us make changes to our society, I hope. The greatest public joy I recall was the lunar landing, which only goes to remind me how far we’ve strayed from what we once were.”

So this got me thinking:  Was the last time our country truly celebrated an event in a universal unbridled display of happiness July 20, 1969, the day the Apollo 11 mission succeeded and the Eagle landed on the moon?  Everyone alive on that day remembers Neil Armstrong’s words “One small step for man, one giant leap for mankind.”  But does anyone remember the inscription on the plaque that was set down on the lunar surface that day:  Here Men From the Planet Earth First Set Foot Upon the Moon, July 1969 AD.  We Came In Peace for All Mankind.

There were many episodes of national optimism, heroism, pride and discovery in the twentieth century.  The Wright brothers took flight, Hitler was defeated, the polio vaccine was discovered, man walked on the moon, the Berlin Wall fell and the Cold War ended. But in the twenty first century we seem to have fallen on some lean times.  Can we truly say that the day Osama Bin Laden was captured and killed a day of national joy?  Or was it more accurately a day of closure, revenge and remembrance of sorrow?  My friend Dr. Emily Gibson, a family practitioner wrote yesterday in her blog “Barnstorming”—“There is an epidemic of hopelessness among our society’s young people that I’ve never before seen to this extent in my thirty years of clinical work. To them, their debts seem too great, their reserves too limited, their foundations too shaky, their hope nonexistent, their future too dim. They cannot ride the waves without feeling they are drowning. So they look for any way out.” (http://briarcroft.wordpress.com)

Perhaps we have become a nation so ideologically divided by race and culture and money that we would not recognize a cause for national celebration if it was staring us in the face.  Every day I see in my practice individual acts of kindness and bravery, and I see cancer patients with that indomitable human spirit overcoming the most desperate of odds.  These individual triumphs inspire me to live my own life with optimism, since there is no reward in doing otherwise. But one day soon, I would like to wake up to news of a nationwide—no—a worldwide celebration.  To my children, and all of the pessimists of their generation, I say “Make it so.”

“Hope is the thing with feathers
That perches in the soul,
And sings the tune–without the words,
And never stops at all.”

Emily Dickinson

FIFTY/FIFTY

When I was 30 years old, I learned the true meaning of optimism.  During my residency, I was fortunate enough to have as a mentor one of the world’s greatest radiation oncologists for head and neck cancer.  This man was  born in China to two Chinese Christian missionary parents.  He and his twin brother were brought to the United States as teenagers, and both managed to graduate from the most prestigious medical school in the country.  Years later, both brothers had established themselves as pre-eminent leaders in their respective fields of surgery and radiation oncology.

My mentor celebrated his sixtieth birthday while I was on his service, yet he was as energetic as men half his age.  Day after day, I would stand behind him looking over his shoulder as he examined some of the most desperate patients in the world, patients who came from every state in this country and from every country in the world, having failed standard treatments for their cancers in top medical centers near their homes. They would wait anxiously as he reviewed their cases, and would lean forward to have their throats and necks examined by the great expert.

And then they would ask the question, the inevitable question—”Doc, what are my chances?”  And the good doctor always had one answer:  “Fifty/fifty”.  Every single time the question was asked, the answer was “fifty/fifty”.  Now I was a good student and a good resident.  I knew that these patients, having such advanced disease and having failed so many other treatments, did not have anywhere close to a fifty-fifty chance of survival.  I knew that at best, their chance of making it five years was 3%.   Or maybe 5% if they were lucky and all went well.  So one day, I couldn’t stand it anymore.  I felt that the patients were being misled, if not actively lied to.

You must understand that it took some courage, not to mention a good dose of moral outrage, for me to confront the great man one day, outside of the exam room.  I said to him, “Dr. W, why do you tell these patients that their chances of survival are 50-50.  You KNOW that is not true!   Why do you say that to them?”  He sighed wearily as if I were the slowest resident in the world,  looked me in the eye, and said something I’ve never forgotten.  It helps to imagine his Chinese accent, still strong more than 40 years after arriving in this country.  He said to me, “Statistics, statistics, STATISTICS!  All you residents ever want to do is quote statistics!  For every patient, either he gonna LIVE, or he gonna DIE!  FIFTY-FIFTY!”

That my friends, is the definition of optimism.  Take it to the bank!

(This man also said many other rather unforgettable things.  When a resident managed to get an answer right during morning conference, he would positively CROW:  “In the land of the blind, the one eyed dog is KING!”  But that’s another story…)