WEBVTT

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[sil.]

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Imagine being an alien and being put into another
person\'s body and not being allowed to do whatever you

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want. And being told,
you know, when I can be

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well and when I can be sick and be giving medicine
so, ya know, they like, \"Well, you\'re gonna get sick

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for a week and a half, lose your hair and puke.\" And then,
just, you can\'t be your own person, you\'re you\'re taken over.

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But you have to let it happen or, ya know, you know
you\'re not gonna be able to be yourself again.

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You\'re being trapped inside, ya know, for
a while I felt like I was trapped inside

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like a box. I was locked in a box and I couldn\'t
get out. You feel like everyone\'s trying to

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take control of your life and you have nothing.
I remember my mom calling me, and I just sat

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down on my bed when she told me for a second and I thought it
out, and I was like, \"What\'s leukemia?\" I felt just really

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empty inside cause I knew it wasn\'t good. And I just
felt really, I dunno, really empty and hollow inside

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and kinda cool all over and I was just like, and the
only thing I could think of doing was walking into the

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living room and turning on TV, and then I was just like, I
just sat there. She just said, \"You got a choice, ya know?

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You can fight it and live, or you
can, you can go home and suffer for

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6 to 8 months if that.\" Ya know, give me

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10 minutes to think about while I spaz out some more cause
I\'m not too happy. I\'s like, \"All right, I wanna live,

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ya know, what do I gotta do? What am I lookin, ya know, what
am I lookin at there?\" She like, \"Two years of treatment.\"

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I\'s like. \"Youch.\" Ya know, it\'s tough enough
just tryin to decide what you wanna do,

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ya know, and to, to find your own identity,
then. To hafta find your identity

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while battling cancer. Ya know, then you
get like a whole separate identity on the

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side.

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[music] Cancer is a difficult and
trying event for even the most

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stable and well-adjusted person, but it can be
most dramatic when it comes during teenage years.

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It creates total disruption at
a time of life characterized

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by myriad challenges, changes
and often times, confusion.

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This video explores psychological aspects
of adolescent cancer and its treatment.

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The focus is on the relationship between
patients and their primary caregivers.

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It addresses the issues of diagnosis
and communication, body image

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and feelings of missing out.
Loss of control and empowerment.

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The goals of this program are to recognize
and understand specific adolescent

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needs, and to provide insight for creating
healthier interactions between caregivers

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and the special population. The
first of many crises confronted

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is the diagnosis period. It\'s the start of a
long term patient and caregiver relationship

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. The best way to
communicate with teenagers

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and their families right
from the get go, the very

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first discussion is to have the
teenager involved in any and all

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conversations. It\'s basically impossible to
treat an adolescent who doesn\'t wanna have

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cancer treatment. So the first thing is that,
unlike a younger child, where the parent is

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totally responsible for making the decision here, even
though the parent is legally responsible, the adolescent

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really has to go along with the treatment and
that means they have to know what they have,

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and what the risks are of not being treated and
what the side effects are of being treated,

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and they basically have to give their
assent to the treatment process.

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[sil.] I didn\'t believe her. I was
like, \"No, excuse me, wrong person.

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This is not what\'s happening
to me, and for a day or 2

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I woul-I refused to believe it. I stay up all
night thinking about it, but didn\'t cry.

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I was just like, \"No no no, it\'s just a weird dream,
it\'s just freaky. People like me don\'t get cancer.

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The next day, my mom came in and, um, a couple of
my friends came in and, ya know, she was like,

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\"Well, I told your friends at school what happened,\"
and I\'m like, \"Ahhh!\" I lost it cause then

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everyone was like, \"Oh, Tina\'s got cancer.\" I\'m like, \"My
God! I\'ve got cancer.\" And everybody\'s like, \"Well, you gonna

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die? You gonna die?\" and I\'m like, \"I
dunno.\" The time when they\'re waiting to

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find their diagnosis is really important because it\'s
the beginning of building an alliance between the

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doctor and the patient and, I think 2
things are really important; 1 is that

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the doctor share with the patient
as much as he possibly can

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about what the, alternatives are in terms of what
the diagnosis might be, and I think the other

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thing that\'s important is availability; that during
the period of uncertainty, it may be important

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just to check in with the patient and say, ya know,
\"We\'re still waiting for the test to come back, but

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is what we\'re looking for,\" someone to be around if
the adolescent has a question because it, it creates

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the idea that the doctor\'s gonna be there with you,
through this process. I think that can help the

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adolescent a good deal. It was a really
really really hard time, but looking

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back on it, I think that I
wouldn\'t have wanted it any other

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way cause she was just so nice. She was just like, \"Oh
can I talk to you in private for a minute,\" ya know? She

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introduced herself, introduced where she was, gave
me all the facts straight out. I knew when like

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I started waking up and my hair was falling out that I was going
bald, and I knew that when I started throwing up that I was getting

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chemo, and I knew that when I was really
tired that, ya know, my blood was low.

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She went through the whole profes-, process of
explaining everything about my platelets and my

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white cells and my hematocrit and how
everything was done. And I knew, ya know, I

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knew what was going to happen. So, we
tell em the truth and then, the next day,

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we go back and we tell em the truth again because
it\'s easy not to hear, it\'s easy to hear it wrong,

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it\'s easy to reinterpret it in a way
that\'s most protective, and without

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breaking down that protection, we have to be sure
that they know and understand what\'s going on.

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[music] A

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diagnosis of cancer is the beginning
of an alienating and isolating journey

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guided by medical personnel. A successful
patient and caregiver relationship can

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greatly ease the way. This requires
open and honest communication,

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which is not always as simple as it seems for
medical staff who are used to a community fluent

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in technical and scientific language.
The doctors could be

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a lot more supportive by being
more straight forward with

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what they say, instead of using all the
medical lingo that they use, ya know? And

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talking about all the, the parts of th-,
th-, of the blood system and all the,

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ya know, organs and all the tissues and calling them
by all their medical names and we just kinda sit there

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looking at them like, \"Okay?
Whatever you say?\" And you feel

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kinda like an idiot sometimes by asking, \"What
does that mean? In regular terms, what does that

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mean?\" Physicians speak in
medical jargon and lingo because

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it\'s, uh, it\'s their own defense.
And sometimes, uh, the kids

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will call you on it and say, ya know, \"Speak plain
English.\" We have to break down one another\'s

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defenses in order to really relate, and those
of us who can speak plain English to them

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, I think, can move along more quickly
and more meaningfully in terms

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of establishing a doctor patient
relationship. She\'d explain it to my mother

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in a way that, she\'d understand, but
she\'d explain it to me in a way I\'d

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understand it, which made it a lot easier on
both of us. Now, my mother got all the technical

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terms, ya know? And I just got the
straight forward, regular English scoop.

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It\'s our job to, uh, to
plug in immediately to the

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level of functioning of the
given teenager, and to address

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our, our um, conversations about diagnosis,

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prognosis, treatment responsibility,
based on that level of understanding.

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[music] Most teenagers are highly
sensitive about body image

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and being different than one\'s peers. What cancer and
treatment effects, these feelings are magnified even more.

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There\'s also a definite sense of missing
out on an important part of life.

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Finally, there\'s a shattering of the
typical adolescent view of immortality.

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Physicians need to directly point out the variety
and the severity of physical and emotional

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changes, which often last beyond treatment.
I think the worst part was

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probably how it makes you look, cause people
tend to look how they feel, you\'re real

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self-conscious of how you look. I guess all of
younger, teenagers [??], I mean you look so bad

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and ya feel so bad, I mean, you have no hair, I mean,
you\'re pale, you\'re lean. You don\'t wanna go to school

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and you don\'t wanna, do anything, ya know? And I missed
out on so many things because I was always so tired

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, I couldn\'t practically get through the day. I\'d come home from school
and I\'d just collapse. I couldn\'t even walk to my best friend\'s house

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, and he lives like 2 blocks away, without
getting a ride home cause I was exhausted, and I

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could never go out with those guys at night.
It\'s totally like missing 2 years of your life

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Ya know, I was ready for somethin\', big, but I wasn\'t ready
for something that big, so I was like, still shocked.

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It was just like 2 years, ya know?
Seven-ya know that I\'m 18 and 19,

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ya know? The best teenage years and I\'m gonna be, I\'m gonna be trapped.
I\'m not gonna be able to do anything. That\'s how I first felt.

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When children and adolescents think and talk
about missing out, it\'s really their way

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of talking some about their fear of death.
It\'s it\'s a way of talking about

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life going on without them, and it\'s
often part of the most painful aspect

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of being sick for kids is to realize what their
friends are doing and they\'re not getting to do, and

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adolescence are particularly black and white in the
way they think about things, so that, they think

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if I\'m missing out today, or this week that, I\'m
always going to be missing out. I\'m not gonna

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get back to doing what my friends are
doing. And, it\'s often very important

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to be able to help them realize that they are missing
out and they certainly have good reason to be

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angry and disappointed about what
they\'re missing out on now, but that

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it doesn\'t necessarily mean that they\'re not
gonna be able to do some of those things.

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You guys ready? I think the
worst part of having cancer is,

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knowing that the possibility could come
when I wasn\'t gonna be around anymore.

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To sit there and think what my friends
were gonna do when I wasn\'t in

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school and how my family
was going to react.

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And then, to just be like, ya know that could
happen. This isn\'t just a, somethin\' stupid

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that a teenager thinks about, but I mean, ya know,
I might not be around next year. This is something

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serious, and it\'s especially scary when
you\'ve had friends around you die.

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Then you think, well, they didn\'t make it.
Maybe I won\'t. So much of normal adolescence

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is ignoring, as actively as possible

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, that anything bad could happen to them,
and certainly ignoring that they could die.

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And much of normal adolescent
behavior is, is a challenge of their

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immortality. We are in this
unpleasant position when we meet them

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of saying you are about to deal
with your mortality in a way

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that, you know, is not scheduled for another 50 years.
Acknowledging the seriousness of the disease and the effects of

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treatment is overwhelming for any cancer patient.
But the loss of control over their lives

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is particularly acute for teenagers.
They are just beginning to

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become independent and self-reliant
and suddenly, that\'s taken away.

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It\'s like being hung upside down by
your ankles... cause then you have no

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control. That\'s the worst part.
You\'re in someone else\'s

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hands basically. It\'s like being in a
round room and told to go to the corner.

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Just there\'s no corner. Ya dunno what\'s gonna
happen, you don\'t know what\'s going on, ya don\'t,

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ya don\'t really understand, what the sickness is, until
later on. I still don\'t understand everything. Well, I feel

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helpless in the sense that, I have no control
over what\'s happening with my own body.

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I prefer that doctors
treat me more as an equal

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, and to discuss with me

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what\'s going to happen and telling
me what\'s going to happen.

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I think there are a number of things that the medical community
can do to help adolescence regain a sense of control.

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First of all, I think the adolescent
really does feel good usually about

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forming a personal relationship with the
doctor, feeling that, that they have an

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important bond and that the doctor will sit down
alone with the adolescent and talk with him or her

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about what is troubling them about their illness,
and we\'ll also share with them all of the

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many decisions along the road to their
cancer treatment. I think that the

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ways we give control are within

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reasonable bones to let, to let
them have options where options can

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exist. To create some options.
When it comes to, um,

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treating somebody on a protocol, it\'s-most of them
are fairly rigid although there is some room for

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compromise and some room for negotiation, and we\'ll try
really hard to do that, but when push comes to shove,

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there\'s certain things that you have to do,
but within that frame work, you\'re gonna be

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treated today. We\'re gonna start now. Which hand do you want me
to use? What bed do you want to be in? How awake do you wanna be?

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How asleep do you wanna be. We can
adjust those things, and if you

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can ask a teenager some of those questions,
and give them some control over what the

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day\'s going to be like within the frame work that you
have to have, and they kind of get the feeling that

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the nurse is trying to figure out how to
make this as easy as they can and for me.

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You try to take control out of what
you can take control out of. Ya know

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the doctors sit there and they\'re like, \"Well, we need ya to
come in on this day and this day and you\'re like,\" All right,

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let\'s make a compromise, ya know, I\'ve gotta do something
for school or, I gotta be home. And you try to get

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some sort of control out of what you\'re doing or try to make some
type of schedule, so you know you\'ve got, ya know, you can talk

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to the nurses on the hospital floors
and say, \"Well, I\'d like to do

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this at a certain time and I know I have a cat scan, can we
schedule it? Ya know, for cert-see? You have some control

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over it, it\'s still your life. It\'s not-You\'re
not just a statistic to some doctor

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who\'s running all the tests. The other
thing that the doctor can do is

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to encourage the adolescent.
To go out into the world.

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To go back to school. To, um, go
on a ski trip. To go to the prom

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, and to feel like they don\'t
have to be coddled at home.

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Clearly, the goal for everyone is
to cure the patient, to the extent

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that the kids themselves
have a role in it and

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recognize that, instead of it being
done to them, they are doing it

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for themselves, is a critical issue.
They can almost always be congealed

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to that position. I\'m just
gonna clean it up, put the

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needle in. Draw the blood and flush it.
A log-term cancer therapy dictates

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a necessary dependence on adult
medical staff, and a forced obedience

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treatment course. Doctor\'s need to be prepared for
a response of adolescent feelings and behaviors

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Which include anger, resentment,
and the risk of noncompliance.

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The adolescence sense of
trust is pretty fragile

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and it\'s very important that the doctors set out
from the very beginning that there may be changes

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in the treatment regimen, that there may be,
uh, times when the doctor can\'t predict

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whether somebody has to come in to the hospital
or doesn\'t have to come in to the hospital, um

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, but that they will always come back to the
adolescent and tell them honestly what\'s going on

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, and what\'s behind the, the change and the
treatment procedure, treatment process.

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[music]

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Being alone and weak are feelings
that dominate lives of sick

00:16:55.000 --> 00:16:59.999
cancer patients. Doctors are in a unique
position to provide patients more than

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the chemotherapy, radiation, and other
technologies of treatment. The impact of a

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position\'s presence and support on adolescence
is profound. The extent of this influence

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is often underestimated. Cause if you don\'t know
what\'s going on, it\'s every day you sit there

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am I gonna die tomorrow? Ya know, I\'ve gotten really sick and layin\'
in the hospital, I\'ve been in intensive care and just been like,

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\"Am I gonna get out of here? Am I going home?\" When you don\'t
know what\'s going on all you do is sit there and think

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I\'m gonna die, I\'m gonna die, I\'m gonna die, I\'m really sick. They\'ve
got me on all this medicine. I\'m seeing all these specialists.

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I\'ve gotta go for all these tests. What\'s
going on? And then when the doctor\'s come in

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and they say, \"Hey, things are going really really tough,
but we think you\'re gonna pull outta this,\" you\'re like

00:17:40.000 --> 00:17:44.999
, \"All right.\" I think it\'s really
important for physicians to recognize

00:17:45.000 --> 00:17:49.999
that, there\'s a certain power
in their relationships

00:17:50.000 --> 00:17:54.999
, especially with the teenagers.
Maybe in this era where,

00:17:55.000 --> 00:17:59.999
we\'re all meant to be egalitarian
in our relationships,

00:18:00.000 --> 00:18:04.999
we fail to use, actually, for
our patients, the power of

00:18:05.000 --> 00:18:09.999
being able to, reassure and [shower] them up. And
sometimes when the kids are really at their flattest

00:18:10.000 --> 00:18:14.999
, to be there, in person, to
show them that you\'re with them

00:18:15.000 --> 00:18:19.999
to touch is very very important;
Some contact, or hand holding

00:18:20.000 --> 00:18:24.999
, whatever it might be. A lot of stuff
really hurt, but she\'d speak me through it

00:18:25.000 --> 00:18:29.999
, like with a, with the spinal tap or
somethin\', ya know she\'d tell me what\'s

00:18:30.000 --> 00:18:34.999
going on. She\'d show me what she was gonna be
doing. She\'d explain it if she was doing it

00:18:35.000 --> 00:18:39.999
, and like, instead of just having me on the table, I
didn\'t, when I was on the table I didn\'t just feel like a

00:18:40.000 --> 00:18:44.999
, a slab in the morgue. Ya know? I\'s, she was
keeping me interested in what was going on

00:18:45.000 --> 00:18:49.999
, a-and it seemed to make it go
by that much quicker. I think

00:18:50.000 --> 00:18:54.999
teenagers really accept people
more than the accept, positions of

00:18:55.000 --> 00:18:59.999
people, and if you\'re a straight forward human
being who likes to do whatever you like to do

00:19:00.000 --> 00:19:04.999
, and you share it with them, I think they\'re
more willing to open and share with you

00:19:05.000 --> 00:19:09.999
who they are. They really want to
be people with diseases and not,

00:19:10.000 --> 00:19:14.999
the other way around

00:19:15.000 --> 00:19:19.999
[music]

00:19:20.000 --> 00:19:24.999
The countless scans, procedures, needles,

00:19:25.000 --> 00:19:29.999
clinic visits and hospital admissions are a
powerful influence in the life of a growing

00:19:30.000 --> 00:19:34.999
adolescent. The interactions between medical
staff and teenagers have a dramatic

00:19:35.000 --> 00:19:39.999
effect on personal development. The patient
and caregiver relationship can provide

00:19:40.000 --> 00:19:44.999
optimal medical care and, at the same
time, promote normal, healthy growth and

00:19:45.000 --> 00:19:49.999
maturation. The rewards of
successful relationships are felt on

00:19:50.000 --> 00:19:54.999
both sides. I like adolescence

00:19:55.000 --> 00:19:59.999
because they always tickle a part
of me that I like to think has

00:20:00.000 --> 00:20:04.999
persisted. I like them
because they\'re forward

00:20:05.000 --> 00:20:09.999
looking, and I think if you\'re in cancer medicine,
you\'re forward looking. You\'re an optimist by nature

00:20:10.000 --> 00:20:14.999
, teenagers are optimists by nature. You
don\'t want this disease to kill them,

00:20:15.000 --> 00:20:19.999
adolescence don\'t ever think anything can kill
them. There\'s so many things that are in parallel

00:20:20.000 --> 00:20:24.999
between a teenager and an oncologist
that in many ways, it\'s almost a

00:20:25.000 --> 00:20:29.999
natural mix, if you look for it.
To the people who care,

00:20:30.000 --> 00:20:34.999
the ones that are there through the
needles, surgery, and chemo, I thank you.

00:20:35.000 --> 00:20:39.999
You are the ones that keep me going, you are my shoulder
to cry on, and my punching bad to let me aggression out

00:20:40.000 --> 00:20:44.999
on. You are my reason to put up
with the needles and the pain, and

00:20:45.000 --> 00:20:49.999
give a thanks to the people I meet
that look past my shimmering head and

00:20:50.000 --> 00:20:54.999
into my heart. Past the scares to my
friendship inside. I know these people

00:20:55.000 --> 00:20:59.999
inside are staring, but don\'t let it out because,
they know that I\'m not just a cancer patient.

00:21:00.000 --> 00:21:04.999
Thank you once again for letting me be me.

00:21:05.000 --> 00:21:09.999
[sil.]

00:21:10.000 --> 00:21:14.999
[music]

00:21:15.000 --> 00:21:19.999
[music]

00:21:20.000 --> 00:21:25.000
[music]