Yeah, so a couple of years ago I was turning 60, and I don't like being 60.
(Laughter) And I started grappling with this existential angst of what little I had done with my life.
It wasn't the resume of breaking this record here, it was more like, who had I become?
How had I spent my valuable time?
How could this have gone by like lightning?
And I couldn't forgive myself for the countless, countless hours I had lost in negative thought -- all the time I had spent beating myself up for losing my marriage and not stopping the sexual abuse when I was a kid and career moves and this and this and this.
Just why, why didn't I do it better?
Why?
Why?
Why?
And then my mother wilkersonjack@example.org.
And so I starting thinking, not only am I not happy with the past, now I'm getting choked with, "I've only got 22 years left."
What am I going to do with this short amount of time that's just fleeting?
And I'm not in the present whatsoever.
And I decided the remedy to all this malaise was going to be for me to chase an elevated dream, an extreme dream, something that would require utter conviction and unwavering passion, something that would make me be my best self in every aspect of my life, every minute of every day, because the dream was so big that I couldn't get there without that kind of behavior and that kind of conviction.
And I decided, it was an old dream that was lingering, that was from so many years ago, three decades ago -- the only sort of world class swim I had tried and failed at back in my 20s -- was going from Cuba to Florida.
It was deep in my imagination.
No one's ever done it without a shark cage.
It's daunting.
It's more than a hundred miles across a difficult passage of ocean.
It's probably, at my speed, at my age -- for anybody's speed at anybody's age -- going to take 60, maybe 70, hours of continuous swimming, never getting out on the boat.
And I started to train.
I hadn't swum for 31 years, not a stroke.
And I had kept in good shape, but swimming's a whole different animal.
As a matter of fact, this picture is supposed to be me during training.
It's a smiling face.
And when you're training for this sport, you are not smiling.
(Laughter) It's an arduous, difficult sport, and I don't remember smiling at any time during this sport.
As I said, I respect other sports, and I compare this sport sometimes to cycling and to mountain climbing and other of the expedition type events, but this is a sensory deprivation, a physical duress.
And when I started in with the eight hours and the 10 hours and the 12 hours and the 14 hours and the 15 hours and the 24-hour swims, I knew I had it, because I was making it through these.
And when I said I'm going to go out and do a 15-hour swim, and we're coming into the dock after a long day and it's now night, and we come in and it's 14 hours and 58 minutes and I can touch the dock and we're done, the trainer says, "That's great.
It's 14 hours 58 minutes.
Who cares the last two minutes?"
I say, "No, it's got to be 15 hours," and I swim another minute out and another minute back to make the 15 hours.
And I put together an expedition.
It's not that I didn't have help, but honestly, I sort of led, I was the team leader.
And to get the government permissions, you read in the paper, you think it's easy to get into Cuba everyday?
Try going in with an armada like we had of 50 people and five boats and CNN's crew, etc.
The navigation is difficult.
There's a big river called the Gulf Stream that runs across and it's not going in the direction you are.
It's going to the east and you'd like to go north.
It's tricky.
And there's dehydration.
And there's hypothermia.
And there are sharks.
And there are all kinds of problems.
And I gathered together, honestly, the world's leading experts in every possible way.
And a month ago, the 23rd of September, I stood on that shore and I looked across to that long, long faraway horizon and I asked myself, do you have it?
Are your shoulders ready?
And they were.
They were prepared.
No stone left unturned.
Was the mind ready?
You know, you're swimming with the fogged goggles, you're swimming at 60 strokes a minute, so you're never really focused on anything, you don't see well.
You've got tight bathing caps over your ears trying to keep the heat of the head, because it's where the hypothermia starts, and so you don't hear very well.
You're really left alone with your own thoughts.
And I had all kinds of counting systems ready there in English, followed by German, followed by Spanish, followed by French.
You save the French for last.
And I had songs, I had a playlist in my head -- not through headphones, in my own head -- of 65 songs.
And I couldn't wait to get into the dark in the middle of the night, because that's when Neil Young comes out.
(Laughter) And it's odd, isn't it?
You'd think you'd be singing Leonard Cohen's "Hallelujah" out in the majesty of the ocean, not songs about heroin addiction in New York City.
But no, for some reason I couldn't wait to get into the dark of the night and be singing, ♫ "A heard you knocking at my cellar door ♫ ♫ I love you baby and I want some more ♫ ♫ Ooh, ooh, the damage done" ♫ (Applause) The night before I started, I finished Stephen Hawking's "The Grand Design."
And I couldn't wait to trip the mind fantastic.
About the 50th hour, I was going to start thinking about the edge of the universe.
Is there an edge?
Is this an envelope we're living inside of, or no, does it go onto infinity in both time and space?
And there's nothing like swimming for 50 hours in the ocean that gets you thinking about things like this.
I couldn't wait to prove the athlete I am, that nobody else in the world can do this swim.
And I knew I could do it.
And when I jumped into that water, I yelled in my mother's French, "Courage!"
And I started swimming, and, oh my God, it was glassy.
And we knew it, all 50 people on the boat, we all knew this was it, this was our time.
And I reminded myself a couple hours in, you know, the sport is sort of a microcosm of life itself.
First of all, you're going to hit obstacles.
And even though you're feeling great at any one moment, don't take it for granted, be ready, because there's going to be pain, there's going to be suffering.
It's not going to feel this good all the way across.
And I was thinking of the hypothermia and maybe some shoulder pain and all the other things -- the vomiting that comes from being in the saltwater.
You're immersed in the liquid.
Your body doesn't like the saltwater.
After a couple of days, three days, you tend to rebel in a lot of physical ways.
But no, two hours in, wham!
Never in my life ...
I knew there were Portuguese men o' war, all kinds of moon jellies, all kinds of things, but the box jellyfish from the southern oceans is not supposed to be in these waters.
And I was on fire -- excruciating, excruciating pain.
I don't know if you can still see the red line here and up the arm.
Evidently, a piece this big of tentacle has a hundred-thousand little barbs on it and each barb is not just stinging your skin, it's sending a venom.
The most venomous animal that lives in the ocean is the box jellyfish.
And every one of those barbs is sending that venom into this central nervous system.
So first I feel like boiling hot oil, I've been dipped in.
And I'm yelling out, "Fire!
Fire!
Fire!
Fire!
Help me!
Somebody help me!"
And the next thing is paralysis.
I feel it in the back and then I feel it in the chest up here, and I can't breathe.
And now I'm not swimming with a nice long stroke, I'm sort of crabbing it this way.
Then come convulsions.
A young man on our boat is an EMT.
He dives in to try to help me.
He's stung.
They drag him out on the boat, and he's -- evidently, I didn't see any of this -- but lying on the boat and giving himself epinephrine shots and crying out.
He's 29 years old, very well-built, lean, he's six-foot, five, weighs 265 lbs., and he is down.
And he is crying and he's yelling to my trainer who's trying to help me.
And he's saying, "Bonnie, I think I'm going to die.
My breath is down to three breaths a minute.
I need help, and I can't help Diana."
So that was at eight wilkersonjack@example.org.
The doctor, medical team from University of Miami arrived at five in the morning.
So I swam through the night, and at dawn they got there and they started with prednisone shots.
I didn't get out, but was in the water taking prednisone shots, taking Xanax, oxygen to the face.
It was like an ICU unit in the water.
(Laughter) And I guess the story is that even Navy SEALS who are stung by the box jelly, they're done.
They either die or they quickly get to a hospital.
And I swam through the night and I swam through the next day.
And the next night at dusk, again, wham!
The box jelly again -- all across the neck, all across here.
And this time, I don't like it, I didn't want to give into it, but there's a difference between a non-stop swim and a staged swim.
And I gave in to the staged swim.
And they got me out and they started again with the epinephrine and the prednisone and with the oxygen and with everything they had on board.
And I got back in.
And I swam through that night and into the next day.
And at 41 hours, this body couldn't make it.
The devastation of those stings had taken the respiratory system down so that I couldn't make the progress I wanted.
And the dream was crushed.
And how odd is this intelligent person who put this together and got all these world experts together.
And I knew about the jellyfish, but I was sort of cavalier.
A lot of athletes have this, you know, sort of invincibility.
They should worry about me.
I don't worry about them.
I'll just swim right through them.
We've got benadryl on board.
If I get stung, I'll just grin and bear it.
Well there was no grin and bearing this.
As a matter of fact, the best advice I got was from an elementary school class in the Caribbean.
And I was telling these kids, 120 of them -- they were all in the school on the gymnasium floor -- and I was telling them about the jellyfish and how they're gelatinous and you can't see them at night especially.
And they have these long 30 to 40 to 50-ft. tentacles.
And they do this wrapping.
And they can send the poison into the system.
And a little kid from the back was like this.
And I said, "What's your name?"
"Henry."
"Henry, what's your question?"
He said, "Well, I didn't have a question so much as I had a suggestion."
He said, "You know those guys who really believe in what they believe in and so they wear bombs?"
And I said, "Well it's odd that you've learned of this as a noble kind of pursuit, but yeah, I know those guys."
He said, "That's what you need.
You need like a school of fish that would swim in front of you like this."
(Laughter) "And when the jellyfish come and they wrap their tentacles around the fish, they're going to be busy with them, and you'll just scoot around."
I said, "Oh, it's like a suicide army."
He said, "That's what I'm talking about.
That's what you need."
And little did I know, that you should listen to eight year-olds.
And so I started that swim in a bathing suit like normal, and, no joke, this is it; it came from the shark divers.
I finished the swim like this.
I was swimming with this thing on.
That's how scared of the jellyfish I was.
So now what do I do?
I wouldn't mind if every one of you came up on this stage tonight and told us how you've gotten over the big disappointments of your lives.
Because we've all had them, haven't we?
We've all had a heartache.
And so my journey now is to find some sort of grace in the face of this defeat.
And I can look at the journey, not just the destination.
I can feel proud.
I can stand here in front of you tonight and say I was courageous.
Yeah.
(Applause) Thank you.
And with all sincerity, I can say, I am glad I lived those two years of my life that way, because my goal to not suffer regrets anymore, I got there with that goal.
When you live that way, when you live with that kind of passion, there's no time, there's no time for regrets, you're just moving forward.
And I want to live every day of the rest of my life that way, swim or no swim.
But the difference in accepting this particular defeat is that sometimes, if cancer has won, if there's death and we have no choice, then grace and acceptance are necessary.
But that ocean's still there.
This hope is still alive.
And I don't want to be the crazy woman who does it for years and years and years, and tries and fails and tries and fails and tries and fails, but I can swim from Cuba to Florida, and I will swim from Cuba to Florida.
Thank you.
Thank you.
(Applause) Thank you.
(Applause) And so, what after that?
Are you going to swim the Atlantic?
No, that's the last swim.
It's the only swim I'm interested in.
But I'm ready.
And by the way, a reporter called me the other day and he said he looked on Wikipedia and he said he saw my birthday was August 22nd 1949, and for some odd reason in Wikipedia, they had my death date too.
(Laughter) He said, "Did you know you're going to die the same place you were born, New York City, and it's going to be in January of '35?"
I said, "Nope.
I didn't know."
And now I'm going to live to 85.
I have three more years than I thought.
And so I ask myself, I'm starting to ask myself now, even before this extreme dream gets achieved for me, I'm asking myself, and maybe I can ask you tonight too, to paraphrase the poet Mary Oliver, she says, "So what is it, what is it you're doing, with this one wild and precious life of yours?"
Thank you very much.
(Applause) Thank you.
Thank you.
Thank you.
Thank you.
(Applause) Live it large.
Live it large.
Science.
The very word for many of you conjures unhappy memories of boredom in high school biology or physics class.
But let me assure that what you did there had very little to do with science.
That was really the "what" of science.
It was the history of what other people had discovered.
What I'm most interested in as a scientist is the "how" of science.
Because science is knowledge in process.
We make an observation, guess an explanation for that observation, and then make a prediction that we can test with an experiment or other observation.
A couple of examples.
First of all, people noticed that the Earth was below, the sky above, and both the Sun and the Moon seemed to go around them.
Their guessed explanation was that the Earth must be the center of the universe.
The prediction: everything should circle around the Earth.
This was first really tested when Galileo got his hands on one of the first telescopes, and as he gazed into the night sky, what he found there was a planet, Jupiter, with four moons circling around it.
He then used those moons to follow the path of Jupiter and found that Jupiter also was not going around the Earth but around the Sun.
So the prediction test failed.
And this led to the discarding of the theory that the Earth was the center of the universe.
Another example: Sir Isaac Newton noticed that things fall to the Earth.
The guessed explanation was gravity, the prediction that everything should fall to the Earth.
But of course, not everything does fall to the Earth.
So did we discard gravity?
No.
We revised the theory and said, gravity pulls things to the Earth unless there is an equal and opposite force in the other direction.
This led us to learn something new.
We began to pay more attention to the bird and the bird's wings, and just think of all the discoveries that have flown from that line of thinking.
So the test failures, the exceptions, the outliers teach us what we don't know and lead us to something new.
This is how science moves forward.
This is how science learns.
Sometimes in the media, and even more rarely, but sometimes even scientists will say that something or other has been scientifically proven.
But I hope that you understand that science never proves anything definitively forever.
Hopefully science remains curious enough to look for and humble enough to recognize when we have found the next outlier, the next exception, which, like Jupiter's moons, teaches us what we don't actually know.
We're going to change gears here for a second.
The caduceus, or the symbol of medicine, means a lot of different things to different people, but most of our public discourse on medicine really turns it into an engineering problem.
We have the hallways of Congress, and the boardrooms of insurance companies that try to figure out how to pay for it.
The ethicists and epidemiologists try to figure out how best to distribute medicine, and the hospitals and physicians are absolutely obsessed with their protocols and checklists, trying to figure out how best to safely apply medicine.
These are all good things.
However, they also all assume at some level that the textbook of medicine is closed.
We start to measure the quality of our health care by how quickly we can access it.
It doesn't surprise me that in this climate, many of our institutions for the provision of health care start to look a heck of a lot like Jiffy Lube.
(Laughter) The only problem is that when I graduated from medical school, I didn't get one of those little doohickeys that your mechanic has to plug into your car and find out exactly what's wrong with it, because the textbook of medicine is not closed.
Medicine is science.
Medicine is knowledge in process.
We make an observation, we guess an explanation of that observation, and then we make a prediction that we can test.
Now, the testing ground of most predictions in medicine is populations.
And you may remember from those boring days in biology class that populations tend to distribute around a mean as a Gaussian or a normal curve.
Therefore, in medicine, after we make a prediction from a guessed explanation, we test it in a population.
That means that what we know in medicine, our knowledge and our know-how, comes from populations but extends only as far as the next outlier, the next exception, which, like Jupiter's moons, will teach us what we don't actually know.
Now, I am a surgeon who looks after patients with sarcoma.
Sarcoma is a very rare form of cancer.
It's the cancer of flesh and bones.
And I would tell you that every one of my patients is an outlier, is an exception.
There is no surgery I have ever performed for a sarcoma patient that has ever been guided by a randomized controlled clinical trial, what we consider the best kind of population-based evidence in medicine.
People talk about thinking outside the box, but we don't even have a box in sarcoma.
What we do have as we take a bath in the uncertainty and unknowns and exceptions and outliers that surround us in sarcoma is easy access to what I think are those two most important values for any science: humility and curiosity.
Because if I am humble and curious, when a patient asks me a question, and I don't know the answer, I'll ask a colleague who may have a similar albeit distinct patient with sarcoma.
We'll even establish international collaborations.
Those patients will start to talk to each other through chat rooms and support groups.
It's through this kind of humbly curious communication that we begin to try and learn new things.
As an example, this is a patient of mine who had a cancer near his knee.
Because of humbly curious communication in international collaborations, we have learned that we can repurpose the ankle to serve as the knee when we have to remove the knee with the cancer.
He can then wear a prosthetic and run and jump and play.
This opportunity was available to him because of international collaborations.
It was desirable to him because he had contacted other patients who had experienced it.
And so exceptions and outliers in medicine teach us what we don't know, but also lead us to new thinking.
Now, very importantly, all the new thinking that outliers and exceptions lead us to in medicine does not only apply to the outliers and exceptions.
It is not that we only learn from sarcoma patients ways to manage sarcoma patients.
Sometimes, the outliers and the exceptions teach us things that matter quite a lot to the general population.
Like a tree standing outside a forest, the outliers and the exceptions draw our attention and lead us into a much greater sense of perhaps what a tree is.
We often talk about losing the forests for the trees, but one also loses a tree within a forest.
But the tree that stands out by itself makes those relationships that define a tree, the relationships between trunk and roots and branches, much more apparent.
Even if that tree is crooked or even if that tree has very unusual relationships between trunk and roots and branches, it nonetheless draws our attention and allows us to make observations that we can then test in the general population.
I told you that sarcomas are rare.
They make up about one percent of all cancers.
You also probably know that cancer is considered a genetic disease.
By genetic disease we mean that cancer is caused by oncogenes that are turned on in cancer and tumor suppressor genes that are turned off to cause cancer.
You might think that we learned about oncogenes and tumor suppressor genes from common cancers like breast cancer and prostate cancer and lung cancer, but you'd be wrong.
We learned about oncogenes and tumor suppressor genes for the first time in that itty-bitty little one percent of cancers called sarcoma.
In 1966, Peyton Rous got the Nobel Prize for realizing that chickens had a transmissible form of sarcoma.
Thirty years later, Harold Varmus and Mike Bishop discovered what that transmissible element was.
It was a virus carrying a gene, the src oncogene.
Now, I will not tell you that src is the most important oncogene.
I will not tell you that src is the most frequently turned on oncogene in all of cancer.
But it was the first oncogene.
The exception, the outlier drew our attention and led us to something that taught us very important things about the rest of biology.
Now, TP53 is the most important tumor suppressor gene.
It is the most frequently turned off tumor suppressor gene in almost every kind of cancer.
But we didn't learn about it from common cancers.
We learned about it when doctors Li and Fraumeni were looking at families, and they realized that these families had way too many sarcomas.
I told you that sarcoma is rare.
Remember that a one in a million diagnosis, if it happens twice in one family, is way too common in that family.
The very fact that these are rare draws our attention and leads us to new kinds of thinking.
Now, many of you may say, and may rightly say, that yeah, Kevin, that's great, but you're not talking about a bird's wing.
You're not talking about moons floating around some planet Jupiter.
This is a person.
This outlier, this exception, may lead to the advancement of science, but this is a person.
And all I can say is that I know that all too well.
I have conversations with these patients with rare and deadly diseases.
I write about these conversations.
These conversations are terribly fraught.
They're fraught with horrible phrases like "I have bad news" or "There's nothing more we can do."
Sometimes these conversations turn on a single word: "terminal."
Silence can also be rather uncomfortable.
Where the blanks are in medicine can be just as important as the words that we use in these conversations.
What are the unknowns?
What are the experiments that are being done?
Do this little exercise with me.
Up there on the screen, you see this phrase, "no where."
Notice where the blank is.
If we move that blank one space over "no where" becomes "now here," the exact opposite meaning, just by shifting the blank one space over.
I'll never forget the night that I walked into one of my patients' rooms.
I had been operating long that day but I still wanted to come and see him.
He was a boy I had diagnosed with a bone cancer a few days before.
He and his mother had been meeting with the chemotherapy doctors earlier that day, and he had been admitted to the hospital to begin chemotherapy.
It was almost midnight when I got to his room.
He was asleep, but I found his mother reading by flashlight next to his bed.
She came out in the hall to chat with me for a few minutes.
It turned out that what she had been reading was the protocol that the chemotherapy doctors had given her that day.
She had memorized it.
She said, "Dr. Jones, you told me that we don't always win with this type of cancer, but I've been studying this protocol, and I think I can do it.
I think I can comply with these very difficult treatments.
I'm going to quit my job.
I'm going to move in with my parents.
I'm going to keep my baby safe."
I didn't tell her.
I didn't stop to correct her thinking.
She was trusting in a protocol that even if complied with, wouldn't necessarily save her son.
I didn't tell her.
I didn't fill in that blank.
But a year and a half later her boy nonetheless died of his cancer.
Should I have told her?
Now, many of you may say, "So what?
I don't have sarcoma.
No one in my family has sarcoma.
And this is all fine and well, but it probably doesn't matter in my life."
And you're probably right.
Sarcoma may not matter a whole lot in your life.
But where the blanks are in medicine does matter in your life.
I didn't tell you one dirty little secret.
I told you that in medicine, we test predictions in populations, but I didn't tell you, and so often medicine never tells you that every time an individual encounters medicine, even if that individual is firmly embedded in the general population, neither the individual nor the physician knows where in that population the individual will land.
Therefore, every encounter with medicine is an experiment.
You will be a subject in an experiment.
And the outcome will be either a better or a worse result for you.
As long as medicine works well, we're fine with fast service, bravado, brimmingly confident conversations.
But when things don't work well, sometimes we want something different.
A colleague of mine removed a tumor from a patient's limb.
He was concerned about this tumor.
In our physician conferences, he talked about his concern that this was a type of tumor that had a high risk for coming back in the same limb.
But his conversations with the patient were exactly what a patient might want: brimming with confidence.
He said, "I got it all and you're good to go."
She and her husband were thrilled.
They went out, celebrated, fancy dinner, opened a bottle of champagne.
The only problem was a few weeks later, she started to notice another nodule in the same area.
It turned out he hadn't gotten it all, and she wasn't good to go.
But what happened at this juncture absolutely fascinates me.
My colleague came to me and said, "Kevin, would you mind looking after this patient for me?"
I said, "Why, you know the right thing to do as well as I do.
You haven't done anything wrong."
He said, "Please, just look after this patient for me."
He was embarrassed -- not by what he had done, but by the conversation that he had had, by the overconfidence.
So I performed a much more invasive surgery and had a very different conversation with the patient afterwards.
I said, "Most likely I've gotten it all and you're most likely good to go, but this is the experiment that we're doing.
This is what you're going to watch for.
This is what I'm going to watch for.
And we're going to work together to find out if this surgery will work to get rid of your cancer."
I can guarantee you, she and her husband did not crack another bottle of champagne after talking to me.
But she was now a scientist, not only a subject in her experiment.
And so I encourage you to seek humility and curiosity in your physicians.
Almost 20 billion times each year, a person walks into a doctor's office, and that person becomes a patient.
You or someone you love will be that patient sometime very soon.
How will you talk to your doctors?
What will you tell them?
What will they tell you?
They cannot tell you what they do not know, but they can tell you when they don't know if only you'll ask.
So please, join the conversation.
Thank you.
(Applause)