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Slide #1
BRIAN STABLER, MD: Good morning. I am without introduction, but I suppose the program says, just to be sure, that I'm Brian Stabler. I am a native of the United Kingdom. I came to America some thirty-some years ago on a nine-month exchange scholarship for the University of North Carolina at Chapel Hill. And they're still looking for me back in England because my nine months was up a long time ago.
I became through training at the University there, I became a professor in the Department of Psychiatry. First as an assistant professor and worked my way up to full professor of psychiatry and pediatrics. I am by training a clinical psychologist. I am specialist in both child and adult. My major area of emphasis has been behavioral medicine which is the psychophysiology of stress, particularly as it relates to health. I spent 25 years in that job and stopped, retired became emeritus professor in 1998.
Since that time I have become a medical writer and a consultant and I've spent a bit of time working on being the other thing I am, which is a survivor. And it's been 12 years, going towards 13 now, since I first joined the club. And I've got all kinds of badges. As I said yesterday, some of us get our captain's license and some get to be admirals because the cancer ocean can be a real rough place to sail your boat. If you don't know how to do it, I think it can be extremely hard.
This is a session where I hope you will be interactive, but I have a lot of slides. [LAUGHTER] [LATECOMER ENTERING]
This is called, what do we call it -- Living Past Lymphoma. Did you see that I had a jacket? I'll take it off. I don't need a jacket.
Let us do something. Let's cue that piece of music as loud as you can. Listen.
Slide #2
Music is one of the elements of life that create harmonic meaning. Music has power and texture and shape and volume and value and energy. And if, as I would suggest to you, you bathe yourself regularly in the beauty of music, you will be energized in a way that no pharmaceutical product could produce for you. I have learned that over many years. And as I listened just then to that piece by Mascagni, Pietro Mascagni, the Intermezzo, in a very convoluted opera that I don't want to expose you to because it's too heavy. But as I listen to it I find myself being thrilled in my thymus gland and wanting to have tears in my eyes because the music is so profoundly moving.
And during a course of time where I've gone through various intense therapies, I've always used music as form of joy, to counteract what I'm pointing to now, the protracted traumatic stress disorder that I think many of us live under that has these elements of frightful, overwhelmingness and the beliefs that death, as you've heard already in a couple of days, depending upon where you are on the course may be imminent.
Flashbacks that occur. Just like in PTSD, except that in this condition, you cannot get past the frightful event as in PTSD -- post-traumatic stress disorder -- you can leave it. You do leave it. You're almost killed. You're shot upon. Or you're hit by a car or something horrible happens. But in protracted traumatic stress disorder, it goes on and on and on. And if we don't find a way of counteracting that, of behaviorally or psychologically immunizing ourselves against these stresses, we will be overwhelmed because we are normal human beings. But the good word is, it is pretty clear from the evidence I have that if you work on yourself in the same way you might work on yourself because your doctor said you need to lose a few pounds or your heart rate is a little high. Do some pump-ups, push-ups, press-ups, whatever you call them. You can do a psychological workout every day in every way that will make you healthier and stronger and will immunize you against these kinds of fears.
Slide #3
And look at the list of fears that we all have. I don't know about you but I go up and down this list fairly frequently. They should all be on a slide hand-out so if you need copies you'll have them. And we have material at the back of the room afterwards.
But the fear of dying, the fear of recurrence incredibly intense.
Now I would like to suggest that we can get to two areas of psychological skill in our workout that have to do with optimism and hopefulness. And every single person has got the capacity to be both of these things. Many of us believe that we're born skeptics, that we are pessimistic. That we're kind of like Missourians, Show Me. I don't believe it.
But if you're like that you're going to block off the opportunity to learn a lot of things and optimism is the capability, I think of seeing beyond the now. And the belief that "truth" (in quotes) whatever that is, especially truth in scientific journals, that comes in the form of statistics is entirely relative. And it's more relative to somebody else over there than it is relative to me.
And that you can do this -- what state is the can-do state? Is that Missouri too? I just thought about it. This is a belief that you need to put in here -- write it on the edge of your shirt. I can do this. Whatever it is, I can do this.
Hopefulness, balanced thinking where you allow yourself to have -- yeah, that doesn't sound quite good over there, but on the other hand, I can think about a list of positive things that would keep me at least balanced and maybe pushed over to positivity where you can explain to yourself negative things. I'll talk about that in a minute -- how you can download and deal with toxic, malignant sort of cancerous thoughts that grow and metastasize in your brain and that you don't realize are there because they're unconscious.
And the people who use support, who know how to ask for help and then when someone helps, be grateful for it in such a way that you can actually give help back. Whew! Man, when you are at that spot, you are in a positive catbird seat.
Whatever I'm talking about here sounds a little abstract so I brought along two friends who are survivors and they both have elements of this in their sort of vocabulary. And it's so simple that I'm not going to show you anything here that's very profound, like you'll say, "Oh, yeah!" "Now I know."
These are two people talking about their experiences with lymphoma and giving us the sense that they have optimism or hopefulness. Here is Ken. Oh, I'm optimistic.
FEMALE SURVIVOR: As far as I'm concerned, first and foremost what you were speaking of before, hope -- always, always and great to have -- there were other things. There are other avenues and so I am not afraid. I'm not afraid. I just don't like to sit on it too long. When I feel something, I want us to go for it. But my message to anybody, anybody, anybody is be your own doctor. Know your body. If you don't know anything else in this world, know your body.]
MALE SURVIVOR: I will take it anytime. In fact, one of the thoughts I had, if this was not going to happen for two months at a time, I'd just come back every two months and take it. You know, and until something came out that wouldn't completely get it. I mean this is the way, I just take it as a chronic illness and in fact, I think that's a good idea.
BRIAN STABLER, MD: Oh, thank goodness. I'm glad my friends came. But gee, do you hear? Both of these people have been in very recent dire circumstance.
Dr. Lessler on the left there is a psychologist who has been fighting Waldenström's and the complications of it. He's had rituxan recently. And now, he was very depressed and he's gotten to the point where with his own bootstraps to where he's now saying, "Okay, maybe this is a thing I'm going to do for the rest of my life." And it may not be appropriate to think like that, but for him that works. That shows his ability to create and disseminate optimism in a very small simple way.
Slide #4
We are all together. This is me in the silly hat. We can turn lights down if you want to back there by the way. I don't need the chandeliers. Talking to a lady who has had a heart attack, breast cancer, kidney disease and something else that I can't remember. But there she is. She's 70 years old, a neighbor of mine. And she's laughing and talking and moving through her life because she talks about always having affirmation. She's always affirmed by her family, by her friends. She confirms what she believes regularly because she's very much in touch with other people. She's certain about it because she's heard it often enough from other people and she's highly affiliated. By that I mean she belongs to lots of different groups, social groups, church groups, even a school PTA. She's a great-grandmother, but she's attached to the PTA. What's up with that? It works very well for her.
Slide #5
There's my ditty. You might want to try making your own up. I'm not a poet, but I did think at one point in time, this year, this was a clever thing to say.
There once was a man who had cancer
who searched high and low for an answer.
Until one day he found in a moment profound
That he himself held the answer.
Slide #6
So the answer is with us. We are working on being better at who we are. We are working at being stronger to resist the overtures of malignant disease. And I think we have to start to do this. We have to start thinking in certain ways that allow us to be clearer thinkers, stronger thinkers. Because there's a very clear connection. Psychologists have showed this for a long time between the way you think which leads to the way you feel which leads to the way you behave. Thinking and feeling, some people believe are one and the same thing. Thinking always comes before feeling. And it's too late once you've got a feeling to try to go back and chase it with your thought. Remember that connection if you would.
Slide #7
So becoming able to be -- the power of play is something that I think is overlooked in the effort to nourish ourselves so that we are fed in a way that makes us psychologically and spiritually and emotionally stronger. The use of routines, the way that we live our life in an organized way that we have times when we do things is proven to be an important part of good mental health.
Joy and humor -- I guess I have some of that because I like to be joyful and I like to have humor around me. If I don't have humor, I will make it up.
The joy of sensation. I love to get into hot tubs or I love to swim or I love to ride my bike through the air so that I can feel the wind whipping past me. It tells me that I'm still there. I'm fairly imaginative and getting more so with old age because I'm practicing at it. And then music. These are elements of joy and fulfillment that I think I found to be very strong and are a part of my attempt to become a thriving survivor.
Feelings, when I talk about reactivity. Feelings are usually felt first. And I don't think we realize it but when you get a feeling, it hardly ever occurs out of thin air. It's because you've just a moment before had a kind of a thought that usually has got a negative toxic connotation. And the feelings that we most often see occurring that way are anxiety of the things that bother people anywhere in the world.
It isn't any kind of a bug or a virus that is most commonly the thing that brings mankind down. It is anxiety, one way or the other.
And when we get those feelings we judge them later, as I just said, and end up getting into a heart vs. a head conflict. The head, if we can do it, should always be in front of the heart. That sounds like something the preacher might say. It is Sunday, you know.
Slide #8
There is a technique called "freeze framing." It's described in a book called "Heart Math." It is a new technique that involves learning to control your heart so that your body doesn't get as excited as it might and upset your health. When you feel the feeling come on, the negative, anxious, sort of clammy feeling, you freeze it. You grab it cognitively with your brain. You shift your focus to your breathing heart, sometimes by touching it like that. And ask, in a quiet way, your heart to settle down. I'm condensing into a few lines here which takes a lot of writing to describe. But you are then going to recall a positive event or a feeling in your life that is in a sense contradictory to the negative "freeze frame" you've got.
So you hold the cold, bad, evil thought like "God, this chemo is going to kill me." And you pull up in your mind's eye, the image of a contradictory situation or event. And you put the two together. And you ask, what is a better response? The better response is always that your heart wants to be quiet, that you seek to be peaceful, that you look for joy. Listen then to your quiet heart answer and take peace from that.
Slide #9
There is also a book I'll show you in just a minute but I want to demonstrate to you with a little bit of science here that when researchers in California who use the heart math technique studied two hormones, stress hormones (cortisol and DHEA) in subjects who were exposed to this kind of therapy -- the pre-, on the left, cortisol level was high. It was significantly lower when they'd gone through six-week course of training. DHEA is another stress hormone that we don't want to have in our body -- actually we want to have more of it in our bodies, I should say. And it was low in these patients, as you see on the right, and got higher.
Now that's a very simplified graphic, but it is one of many studies that show that when people learn how to put their head, the cognitive facility, in front of their heart, in front of their autonomic nervous system, they can make physical changes occur that have implications for immune system and implications for cardiac health, hematologic health -- any form-and mental health certainly.
Slide #10
And there is a quote that I saw that kind of went along with that. I'm always looking for somebody who says smart things. This is a guy, John Bon Jovi, who's a singer. I think does he know anything? But he said this.
AUDIENCE MEMBER: He's coming.
BRIAN STABLER, MD: Then he's pretty smart then. Map out your future, but do it in pencil -- because if you're lucky, it will change. That's the way I read it. And if you're careful and if you're practiced, you can change it. I know we've all had the same experience. People have been told, you have only what -- six months or a year? Has someone been told that? I've heard that I had a 24% chance of living for a year from a very learned doctor. And I said, "Well, I think you must be talking about somebody else." That's something you got from the Annals of Medicine, which I don't subscribe to. So I changed that.
Slide #11
Feeling victimized. That's another element of working through being a thriving survivor. Does anybody know what the origin of the word patient is? Are you all patients? Everybody is a patient here? Or a caregiver. Just for interest. It comes from not the facility to be patient. It comes from the Latin word meaning victim, patiens, victim or sufferer.
And when it was coined a thousand or more years ago, it was an appropriate thing to say because anyone who got a cold, a thousand years ago, was in -- good likelihood they weren't going to make it very long. Anybody got pneumonia or the flu. So when you saw a patient, that's the way they thought of them and they used the word correctly.
But these days, calling a person a victim by way of calling them a patient, and what's worse for us, to accept that mantle that that's what we are, puts us in the wrong position from the get-go, doesn't it? The moment you're diagnosed and they talk to you about being a patient, you're seen as a victim -- at least according to the way the terminology runs.
It means, as I said, victim means -- sorry patient means victim or sufferer and sometimes I've learned in trying to put together a thriving pathway that being patient isn't a good thing to be, even if you take it in that other way. I don't want to be. I shouldn't be a patient patient. And I think I heard Bobby say that. You know, you get something going. Hop on it. Get on it. Get going. Move yourself along. Being a little Type A.
And people who are Type B -- you know what I mean -- the more quiet, deferred folks, can very easily learn to be Type A, but they need to want to learn.
Live outside your patienthood job. And I can tell you at the moment I am very strongly into that. This is a big thing for me to come back to lymphoma and to talk about it because I've left it behind. I'm somewhere else. I'm interested in writing a screenplay about a crazy guy and having actors in it. I'm interested in writing a novel about an English detective that nobody has ever heard about before. I'm interested in making documentary drama. But I'm not really interested in being at this point in time a lymphoma person. I just don't want to live with it anymore. So I've put it away in a portion of my hard drive that I can come to when I need to -- because I can click on it -- and open it up and look and see what is in there. And if there is something in there that I could help somebody else with, I will. I'll bring it out and I'll write about it. Or I'll come and talk about it. But it is definitely not the thing that rules my life now -- 12 or more years out.
And on-the-job instruction that we all get every day comes forever and ever and ever and I'm still getting that on-the-job instruction. And I hope to all of my life. I really do, but I won't go back and enroll in the lymphoma college -- even if they tell me I have to.
Slide #12
So choosing your options for somebody like me. I think in being a thriver, if that's what I am -- I have to believe and I do believe that all things are possible but not all probabilities are acceptable. And when you talk to physicians and you've heard that over 2.5 or 2 days, lots of things about statistical probabilities of whether or not someone is going to make it from A to B have no meaning for an individual. No meaning whatsoever. If you take a hold of a statistic and draw it close to your heart, your heart will jump. And then it will get a little sick. And then you'll get sick. You don't need numbers to live your life. Those are used by scientists to describe large universes of people in a way that's meaningful to other scientists. But I've never known of a time when a statistic is useful to a patient.
Your goals may be big as you're moving through. You're seeing way up in the road -- right now I'm shooting for 2006. 2006 I think. But I'm actually living towards Halloween. It's true. That's how I have myself right now.
I have a wonderful costume that I'm going to wear on Halloween -- kind of a black body suit with a feathery head. I'm really going to scare myself. [LAUGHTER]
And your plan, whatever it is as you go about making your life template is really the only one that matters. You can get consultation and you can get advice and you can read the books that I'll suggest to you on a list of readings back there, but eventually you are the author of your own play. And if you take that position, then every time you run into either another patient or a doctor or an expert of some kind or another -- what you're saying is, here is where I am, what do you have to give me that will h help me to move it along? But you will process it, you will digest it, but you will fit it into your unique jigsaw puzzle. Do not ever get classed as a group member because you are always a unique individual.
However, that is not to say that you shouldn't -- as the realtors say -- location, location, location. You should consult, consult, consult. Get all the smartness you can from somebody else. And it could be the person sitting next to you. It could be the rabbi. It could be the priest. But look to draw it from them. Don't wait for them to put it on you.
Slide #13
Ah! How a thought becomes an action. I love these. I love that I can do this on PowerPoint. As I just told you earlier, every action in your life has got three elements to it. Do I have a pointer because I'm thinking I want to get up her? I know we bought one.
On the podium, that's too far.
This is the piece that we all get into -- we live in our feelings, but as I told you, your thoughts control your feelings first. How you think sets up how you feel. How you feel sets up how you behave and all of that comes together as some kind of action.
There is a way of working on dividing these things up and catching them as you move through life. I've got a workbook here. Thank you, sir.
Mind over mood. You don't need to write it down. It should be on your list at the back. Okay. It is a practical way of learning to affect your mood by working on how you think. The style of thinking that you have, doing little exercises. I'm going to pass it around so that you can touch it and look at it and see that it's a 1995 item I suggested to all of my patients. And everybody yet, comes back and says, "Dang, that was really helpful." I'm glad we could do that. People like to do proactive exercises, I think. So I'd suggest that to you and it's designed to help you modify these kinds of things.
Slide #14
When a person becomes lost in thought, maybe it's because thought is unfamiliar territory. And if we are struggling with the vicissitudes of lymphoma and its associated malignant cousins, it's very hard sometimes to get to thinking, isn't it? Because you're feeling so much. It feels so bad to have this thing stuck in your body and not to be able to trust your body. But I want you to feel hopeful that you can -- sure as I'm standing here -- connect up with that powerful thought process that you have -- that will help you re-steer the course that your little ship of life is on. Get out of that unfamiliar territory.
Slide #15
The toxic thinking style that I was talking about earlier, the things that cause kind of what I call "cognitive cancer" "thought cancer" if you like. People think black and white, it's all or nothing. Right?
Oh my God, I've got this disease, that's it. I'm gone. I remember when they told me. I'm on the phone. [INHALES] This colleague is saying, "Brian." This is my friend the doctor saying, "Brian, I think you have -- it looks to me like you've got a low-grade lymphoma." [INHALES] "Oh crap! Well, what's the mortality?"
"Well, you know, it's not good right now..." Trying to listen. I'm walking up and down on the cordless phone. "Well, is that kind of like Hodgkin's disease?" "Yeah, well, it's kind of like it, but it really isn't"
"Well, what are we going to do? Is it like chemotherapy?" "Yeah, we'll be doing chemotherapy." [INHALES AGAIN] Man! I was just flying. The thoughts were going all over the place. But I couldn't catch them. Because I was feeling so much. It was kind of like - [BREATHES IN] My wife is saying, "What's up? What's up?" And I'm going, "Ooooh.... " And do you know what I was doing then? I was catastroph-izing. All I could make myself feel was "Well, they said I'm dead. I'm 45 years old, I'm finished. I'm done. I'm gone. Oh God, I won't be able to see the sunset anymore. I won't be able to go to those glorious churches with that wonderful music. I won't be able to eat steak. Oh!"
You laugh, but this is what happens. You go back and sweep up the nasty thoughts that are going on. Emotional reasoning. Because I was feeling bad, that's how it was. We do that all the time. You believe that your feelings are actually the way you are and that's wrong. You need to get a way from that. You're feelings are the result of thinking that's crooked, bent, distorted.
Then you start telling your own fortune. You know what's going to happen? Then you start minimizing, well, maybe this won't happen! No, well, maybe that will happen. Kind of swing it around. And of course, your mind-reading all the time when you're with doctors. You know what they're thinking, what they're going to tell you. You can just predict it.
Slide #16
So all of this is called "automatic thinking." And your beliefs, your assumptions and your conclusions are the critical element of this. You've got them built in. After a while they get hardwired. What you believe, what you think you understand and you need to shift it. That little book will help you shift that. You have what we call in the business, "explanatory styles," the way you explain things to yourself is peculiar to your style. And some of us are negative; some of us are positive; some of us are flexible. And I think the trick is to get in the middle.
And by doing it automatically, over and over and over, it becomes sort of ingrained. And the brain is a computer and you can lay down tracks on your hard drive, early on or late. Once they're there, unless you go back and do something like we had to do here and manipulate the dickens out of them until they're not there anymore, until you change the track.
It's unconscious psychology and it ends up being a dichotomy of are you an optimist? Or are you a pessimist? Do you go on the black side or the white side of things?
Marty Seligman who is actually -- I think he's on the list too, has some very good writing -- again, inexpensive books. The book I'm thinking of is Authentic Happiness in which he shows you using little tests and quizzes and exercises, how to work on your own styles so that you can become your own best advocate. The Foundation will do it for you, to some extent, but again, the Foundation can't be advocate for you unless you're advocate for yourself and come to the Foundation.
Is it making sense? Can I get a nod.
AUDIENCE: Yes.
BRIAN STABLER, MD: Because you are a big group. You can say "Amen," if you want to. [LAUGHTER]
Slide #17
So all of this -- I want to leave time for you to talk, but J.C. Watts who is in the Congress -- was he a Senator, no, Representative. He's a football player. He's just leaving now. I think he's from Oklahoma. And he had a lot of struggle with this. Whether he should come or go, whether he should stay or leave. It doesn't take a lot of strength to hang on. That rings a bell for me. Because I can do that, I've hung on. I've been hanging on. But it does take an enormous amount of strength to kind of let go in the sense that you need to change where you are, the thing that you're hanging onto is probably not the right thing. We need to move. We need to sometimes give it up.
Final example here, from my own -- if you don't mind my talking about myself sometimes here -- I was at Dana Farber and I was put into the Laminar flow room up there for 30 days, isolation, very intense chemotherapy and body radiation. All your food is irradiated and passed to you through a little hole in the door, so you have very, very minimal contact. It was like being a prisoner of war.
And I got in there -- a couple of days in my thinking started to go a little wonky. I'm very aware of this. And one thought I had would be that I should resist the corrosive effects of the massive doses of Cytoxan I was getting. They would give patients at that time three grams of Cytoxan a day. You get it when you get it in micrograms. We're talking about spoonfuls. So it would knock the dickens out of you. It was really designed to kill everything.
I, after the second day of having Hickman catheters in here and they were pumping this stuff in, I had not vomited. I did not want to throw up. I had a belief that if I didn't vomit, I would be in charge of this thing. By God, I remember. And I'm pale and weak and I'm 200 pounds now. I was 140 pounds then. And I get up on my little special bed in this room, this isolated room and I -- okay, if I hold my head back like this, maybe that will help me. I really need to throw up, but I'm not going to throw up.
And I'm standing like this and the ... uhhh, and suddenly the charge nurse came in. And she's the nurse who was in the military on the weekends. And I know it's going to get recorded, but she is a wonderful, wonderful woman. She said, "G.D. (you know what that means? There's a code word) What the "f" something are you doing? Dr. Stabler, aren't you suppose to know better. Get down and let the medicine work."
"Well, --"
"Get down." And she got me down on the bed and put me out and laid me down. Gave me an emesis basin and [NOISE}, there I went. And I got better. From that moment on, I got better. But I had a very crooked belief that was getting in the way of my therapy, my treatment.
I also had proactive beliefs that I learned to work with while I was in that situation that got me through this prisoner of war state. When it came time, six days later, having been irradiated fully, having been chemotherapied to death, literally to the edge of death. They don't do it quite so harshly now. But this is a long time ago. And they said, "It's time to give you back your marrow."
Well, the most wonderful thing in the world. And so in walked my doctor, Lee Nadler, super guy, but he's really a tough scientist. And then came like side nurses, three house staff, an intern and they all stood around my bed, looking at me. And I'm saying, "Who are these people?" And he said, "These nurses are from Ontario. They've come to study what we're doing here because this is Dana Farber. This is Harvard."
"Oh, okay. So what are you going to do?"
"Oh, we're just going to give you back your marrow." We're just going to give you back your marrow. It was the most important profound moment in my life. I was being born again at that time.
And I said to Lee Nadler, "Gosh, Lee, can you call the minister.
"What? he says. "What do you mean? Do you think you're going to die?"
"No, I'm going to get born."
"What? You must be delucinating or something like that."
I said, "No, just get the chaplain." I said, Oh, my God, I could see him -- we've got to hold everything up. Can you call the chaplain for this guy?
So then Walter came who happened to be a Catholic priest but he was assigned to Dana Farber. And he came in and he'd never been called like this before. And Walter was like what's the matter? He'd been talking to me thinking I was dying. He was going to come to give the Last Rites. And Dr. Nadler said, "Well, he wants you to do a blessing on this bone marrow before it goes back in."
Well, Walter, you could just see him. The glory of his post just came upon him. And he's like -- "Oh, this is so" -- and he did a little Catholic blessing. He blessed me, he blessed the doctors and then he blessed this little tiny bag of marrow. And gosh, it was so, so moving. But it was such a good thought. I am so glad that it came to my mind. And believe me now they do it regularly. Every patient is asked, "Would you like to have a blessing of your marrow?"
And the priest has never gotten over it. I mean he's just so -- Walter was so excited.
But I lived on. And I like to think, not entirely by chance because if I read the stats, the chances are all against me. But from now on I am going to go in another direction. I've decided that life is a treat and that you must branch. We're not pine trees, just single sticks in the ground. Most of us are interesting; some more interesting than others. So we need to branch.
Let me give you one more piece of music [MUSIC} that stayed with me. Listen. Stayed with me throughout that time at Dana Farber and brought me up. I know you'll recognize it.
Can you feel it? Go out and do it. Thank you for coming. [APPLAUSE]
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