Talk Shows &
Stories : After
Treatment and Beyond : Women with Brain Cancer, After
Treatment and Beyond, Under 35
Women with Brain Cancer, After Treatment and Beyond, Under
35
Recorded February 27, 2002
Welcome and Participant Introductions
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Dr. Wendy Harpham:
Hi, and welcome to the American Cancer
Society Cancer Survivors Network®. I'm Dr. Wendy Harpham, your
host. Today I will be talking with three women who have all
completed treatment for brain cancer. As a cancer survivor myself,
I'm pleased to be your host for today's conversation about:
dealing with after-effects of treatment; learning self-advocacy
skills; facing loss and facing fears, especially fear of
recurrence; relationships after cancer; finding the positive side
of cancer.
 Our
first guest is Katrina, a 30 year-old survivor from Virginia. Katrina is married
and does not have children. Welcome, Katrina.
Katrina:
Hello.
Dr. Wendy Harpham:
Well, you were diagnosed with a brain tumor in 1996, after experiencing headaches
and seizures. The tumor was believed to be benign, so after surgical removal,
no additional treatment was recommended. Unfortunately, six months later, an
MRI scan showed additional areas of abnormality, so you were seen by several
doctors and had more tests, and I understand that they looked at your old slides
again and re-evaluated them and said that you actually had a stage III anaplastic
astrocytoma. Is that right?
Katrina:
That's correct.
Dr. Wendy Harpham:
Over the next couple of months you got
second, third, fourth opinions, and you underwent a repeat brain
surgery; and you had more treatment after that. Can you share with
us what you had?
Katrina:
I had the monoclonal antibody treatment, and I later
on had some hyperbaric oxygen therapy.
Dr. Wendy Harpham:
But after the surgery, did you have
chemotherapy and radiation therapy?
Katrina:
After the second surgery, I did continue with two oral
chemotherapies.
Dr. Wendy Harpham:
And radiation therapy?
Katrina:
No. My radiation therapy was before the second
surgery.
Dr. Wendy Harpham:
OK. So you had the second diagnosis, then
you had chemotherapy, radiation therapy, and then you had surgery;
and then you had more chemotherapy and this new antibody therapy.
How has your cancer been since you've finished all your
treatment?
Katrina:
It's been stable. I have not been on any chemical
treatments since November of 1998.
Dr. Wendy Harpham:
So, the cancer is in remission?
Katrina:
They have not used that word with me yet. It's just,
every time I have been for the last several years, my MRI has been
stable.
Dr. Wendy Harpham:
So, there are abnormalities that show up,
but they're not changing at all, so they don't call it remission.
But if there is cancer, it's under control, and it's possible
scar?
Katrina:
Right. There is a lot of necrosis there and scar
tissue.
Dr. Wendy Harpham:
Well, thank you for joining us today.
Katrina:
Thank you.
Dr. Wendy Harpham:
 Also
with us is Laura, a 20 year-old survivor from Maryland. Laura is single and
does not have children. Welcome, Laura.
Laura:
Hi.
Dr. Wendy Harpham:
Starting in middle school, you developed
some headaches that progressed and became associated with other
symptoms, including hearing strange sounds, seeing double, and
severe back and neck pain. You went to one eye doctor, and what
did that doctor say and do?
Laura:
He believed it to be lazy eye, and he referred me to
another doctor.
Dr. Wendy Harpham:
What happened at the second evaluation?
Laura:
He saw a lot of pressure, and he ran a lot of tests. I
was there for pretty much the whole day, and then he told me and
my mother that we needed to go and get a CAT scan done
immediately.
Dr. Wendy Harpham:
And the CAT scan showed--?
Laura:
That I had a malignant astrocytoma.
Dr. Wendy Harpham:
So then you underwent surgery, and they
removed the whole tumor?
Laura:
Yes. Ninety-nine point nine percent, to be exact.
Dr. Wendy Harpham:
Did you need any treatment after that?
Laura:
No.
Dr. Wendy Harpham:
What's happened with your cancer since
then?
Laura:
I've been cancer-free from what I know, from what they
tell me.
Dr. Wendy Harpham:
So, that was the only treatment you needed,
and you've been cancer-free since.
Laura:
Yes.
Dr. Wendy Harpham:
Well, thanks for joining us, Laura.
Laura:
Thank you.
Dr. Wendy Harpham:
 Our
last guest is Nicole, an 18 year-old survivor from Virginia. Like Laura, she
is single and does not have children. She lives with her parents. Welcome, Nicole.
Nicole:
Hi.
Dr. Wendy Harpham:
In 1998, you experienced dizziness after
playing sports. An MRI scan showed a brain tumor which you then
had surgically removed, and it was found to be a
medulloblastoma?
Nicole:
Mm-hmm. [yes]
Dr. Wendy Harpham:
That was located directly on your brainstem.
The brainstem is deep in the brain, very close to the center for
the most basic life functions. Now, to prevent this cancer from
spreading or metastasizing, you then underwent radiation therapy,
chemotherapy and some other procedures?
Nicole:
Mm-hmm. [yes]
Dr. Wendy Harpham:
What's happened with your cancer since
you've finished all these treatments?
Nicole:
I'm in remission.
Dr. Wendy Harpham:
So, you've been in remission since 1998.
And no further treatments?
Nicole:
Uh-uh. [no]
Dr. Wendy Harpham:
Well, great. Well thanks so much for joining
us.
Coping with Late Effects of Cancer
Treatment
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Dr. Wendy Harpham:
Immediately after a cancer diagnosis,
everyone is understandably concerned about survival. Am I going to
survive? But once you get through the treatments and you realize
that yes, you are going to survive, after-effects often take
center stage. After-effects are changes and problems that persist
after completion of cancer treatment, or that first appear weeks,
months or years after completion of cancer treatment. Let's start
by talking about dealing with after-effects of cancer treatment.
Katrina, you mentioned a couple of symptoms you've had since your
brain tumor, and you had a lot of brain cancer treatment. You had
three surgeries, chemo, radiation and this new antibody therapy.
How about if you tell us about the after-effects you've had?
Katrina:
 OK, I have lost most of the
sensation on the left side of my body, along with proprioception, which if anyone
doesn't know, it's the awareness of where your body is, without having to look
at it. Say, if your foot is on the floor, you don't have to look at it to see
that, but in some instances I need to look, say, at my left hand to see what
it's doing if I'm going to go pick something up.
Dr. Wendy Harpham:
Where in the course of your illness did
these symptoms develop?
Katrina:
They began happening, it was very slowly, in May of '98, the combination of
the losing of the vision and then the sensation deficits and proprioception
deficits.
Dr. Wendy Harpham:
Katrina, was that before or after your surgeries and treatment?
Katrina:
They were after.
Dr. Wendy Harpham:
OK. How did you obtain information about
these after-effects? How did you find out what they were due to,
what they were, what was going to happen with them?
Katrina:
In my school, all through college I had studied the
brain and the nerves, and so I kind of knew that with what I had
been through, with all the radiation and the chemotherapies and
things of that nature, I pretty much knew what was causing it.
Dr. Wendy Harpham:
Do you remember what emotions you
experienced when you realized you were still having problems?
Katrina:
Oh, I still do! [laughs] I mean, I can't put my hair
up by myself, I can't tie my shoes, you know. So, it's very
frustrating. I used to be a very independent person, and now I
can't drive. Like I said, I can't tie my shoes, I can't put my
hair up the way I like to, and my husband hasn't quite learned to
do it the way I like it, yet. [laughs] So, there are still days
that are very frustrating. Yeah.
Dr. Wendy Harpham:
Were these changes unexpected?
Katrina:
I guess I have to say they were, yeah. I mean, you
realize these things can happen, but you think, well, maybe they
won't happen to me.
Dr. Wendy Harpham:
While you were going through your
treatments, did you expect to be able to get back to the way you
were before?
Katrina:
I did. I didn't think about what the treatment might
cause, deficits the treatment might cause. I just focused on
getting through the treatments and staying healthy and things of
that nature.
Dr. Wendy Harpham:
Well, when the symptoms started, did you
think it might be your cancer as opposed to after-effects of
treatment?
Katrina:
No, not with those symptoms, I didn't. I didn't think
of that. The only time I thought of that is when I was toxic on
one of my medications. I had too much of it, and at that point the
whole family, we all thought that maybe it was tumor.
Dr. Wendy Harpham:
You mentioned frustration. Did you have any
other emotions associated with these difficulties? Anger?
Katrina:
Anger. Yes, I guess anger. Yeah. [laughs]
Dr. Wendy Harpham:
Can you tell us more about that?
Katrina:
Well, I guess it was my own fault. You know, I'd keep
trying and keep trying and just couldn't do it, and I'd get angry.
[laughs]
Dr. Wendy Harpham:
Angry at--?
Katrina:
I guess somewhat at myself for keep trying to do it
and put myself through that. And just at the whole disease.
Everything.
Dr. Wendy Harpham:
What do you think has helped you?
Katrina:
I guess just that it's been so long. I'm going on
seven years now, and so I've been dealing with these things for a
long time. So, some of the anger has subsided, and I just know to
just brush things off sometimes. I've had plenty of times when
I've spilled things, because I don't see them on the counter and I
knock them over, and then I can't feel myself touching them, and
so I've made plenty of messes, and I get angry at myself for that.
But like I said, I've just gotten used to it. The whole family has
gotten used to it, and I think that helps, too.
Dr. Wendy Harpham:
Do you talk about it much with your family
and your friends?
Katrina:
Sometimes. I mean, when it's happening, it's usually
my family, since I don't drive and we kind of live away from the
main town, and my friends are in other places. I don't see my
friends that often to really get into in-depth conversations with
them, so it's kind of me and the family. [laughs]
Dr. Wendy Harpham:
How has talking helped you when you have talked to your family?
Katrina:
Well, my husband always tells me, he's like, "Don't get frustrated. It's no
big deal." You know, then he'll help me do things.
Dr. Wendy Harpham:
So, he's been very supportive?
Katrina:
Oh, yeah!
Dr. Wendy Harpham:
Very patient?
Katrina:
Yes.
Dr. Wendy Harpham:
Well, Laura, what about you? What after-
effects have you had to deal with?
Laura:
 Well, honestly, I haven't had
any side effects from the surgery. The only thing that happened is that I have
a quarter- sized place right under my left arm in my armpit area that's numb,
but that's it. I was definitely blessed, but I was supposed to actually--they
thought that my whole left side was paralyzed, and I was actually already registered
in a rehabilitation hospital, but I ended up not going there, because I came
out fine.
Dr. Wendy Harpham:
So you feel like you really dodged a lot of
problems?
Laura:
Yes! [laughs] Definitely!
Dr. Wendy Harpham:
I'm curious what emotions you experienced
when you realized that not only were you going to survive, but you
were going to survive intact?
Laura:
Definitely excited and very, very happy, because of all
they were telling me that could possibly happen, and they were
almost sure it was going to happen. So the biggest thing for me
was being able to see, I think, because that's--
Dr. Wendy Harpham:
Tell me about that.
Laura:
Well, they told me that I might be blind, either in one
eye or in both, and I know before surgery I was trying to look at
all my family before I went in. [laughing]
Dr. Wendy Harpham:
So you could remember.
Laura:
Exactly, so I could remember them before--because I
think that's a big sense for a lot of people is being able to see
things, and I didn't care if I was paralyzed on my left side, just
as long as I wasn't blind.
Dr. Wendy Harpham:
Nicole, what about you? What after-effects
have you dealt with?
Nicole:
 I have short-term memory loss.
And then ovarian failure. I have to be on birth control the rest of my life.
That's really about it.
Dr. Wendy Harpham:
What kind of problems do you have with your
memory?
Nicole:
Oh, I have so many! It's just things like remembering
in school like new things that are just taught to me. Tests are
really hard. I have to use open book for all my tests. Just new
things are hard for me to learn. I have to study really, really
hard.
Dr. Wendy Harpham:
Now, how long did it take for you to realize
that this was not going to be a very short-term problem?
Nicole:
It took me--well, I thought it was going to go away,
but it's not, if that's what you meant.
Dr. Wendy Harpham:
Right, right. Meaning, in the flurry of
treatment and recovery, you might be thinking, well, I just need
to recover. I just need to get better.
Nicole:
Yeah.
Dr. Wendy Harpham:
But as the short-term memory persisted,
there must have come a point where you realized, well, maybe this
is not going to get all better. It may not even get better at
all.
Nicole:
Yeah. They tried hyperbaric oxygen treatments at my
dad's work, and they thought that would help. It helped just a
little bit but not a lot, and I did that for 60 days, every day
for about an hour and a half.
Dr. Wendy Harpham:
Can you describe what emotions you
experienced, Nicole, as you realized you were going to survive
this, but you weren't going to be the same as before?
Nicole:
I was happy I survived it, but then I was kind of
upset, because I'm not the same as I was before I got sick. I
can't play sports.
Dr. Wendy Harpham:
Why is that?
Nicole:
Because I lost a lot of weight, and my muscles are
really out of shape. Really I have to work out a lot, and I get
muscle spasms really easily. I just really can't play sports
anymore.
Dr. Wendy Harpham:
Now, is the sports off-limits forever or
just--?
Nicole:
No. I should be able to play, like later on, but just
right now they're off. [laughs] I don't play sports right now.
Actually, I do snowboard, but that's really it, but that's still
kind of hard, even now.
Dr. Wendy Harpham:
What do you think has helped you accept the
losses and adjust to them?
Nicole:
Just, I talk to my family a lot about it. That's really
it.
Advocating for Yourself as a Survivor
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Dr. Wendy Harpham:
Many survivors and family members tell us
that they learn how to advocate for themselves as a result of
their cancer experience. You know, Nicole, you were only 12 years
old when you were diagnosed.
Nicole:
Mm-hmm. [yes]
Dr. Wendy Harpham:
What did having cancer at such a young age
teach you about advocating for yourself? Speaking up for yourself
and taking care of yourself? When you were sick, who basically
talked to the doctors when you went for visits?
Nicole:
My parents. My parents did.
I mean, I was there with them, but my parents really did all the talking.
Dr. Wendy Harpham:
And how has that changed over the years, as
you went through treatment, and now you're 18 years old and you go
for follow-ups?
Nicole:
Sometimes I feel good going back to the hospital, I
mean, just to see everyone and see what's going on, but it brings
back a lot of memories, too. But, I mean, it's not like that big
of a deal for me anymore.
Dr. Wendy Harpham:
Do your parents still go with you?
Nicole:
Yeah.
Dr. Wendy Harpham:
Who does most of the talking now?
Nicole:
Usually when my dad's out of town, my mom goes, but
usually it's my dad that always goes up there with me.
Dr. Wendy Harpham:
Do you think what you've learned about
taking care of yourself through your cancer has shaped other
aspects of your life, Nicole?
Nicole:
Definitely!
Dr. Wendy Harpham:
Can you share with us in what ways?
Nicole:
Let's see, I do the Rockin' Relay for Life every year.
I've been a team captain. I go to a retirement center and just
bring my dog up there and do that, and I just try to enjoy life
more. Not take life for granted.
Dr. Wendy Harpham:
Now Laura, you too were very young when you
went through your cancer treatment. What do you think having
cancer at such a young age taught you about advocating for
yourself?
Laura:
It definitely--after going back
to school after it all, it definitely taught me a lot about how not to care
what other people think. Because I was in ninth grade at the time, so I was
still becoming a person, and still trying to decide who I was and all that fun
stuff. When I went back, I was changed so dramatically because of the fact that,
like Nicole said, you learn not to take life for granted. No one knows when
they'll die and, I mean, tomorrow I could die from something else, but you just--it
definitely made me appreciate my friends and family and my faith a lot more.
Dr. Wendy Harpham:
And what about when you need something or
when you want something? Has going through cancer changed how you
will get your needs tended to?
Laura:
Yeah. Once I noticed after having that is a lot less
because--I think also I notice that a lot more is when I hear
people complaining about things. I usually think to myself, "You
have no right to be complaining," [laughs] because there is so
much more problems in this world and, I don't know.
Dr. Wendy Harpham:
As a young person, has that been a problem,
dealing separate, you know, not interested in the same things or
appreciating things more than the average 14 year-old or 16 year-
old or 20 year-old?
Laura:
I think it definitely was a big issue when I was in high
school, but now that I'm in college, I'm pretty much like on the
same level as everyone else. Because in high school, no one could
really understand or relate to what I was going through. So I kind
of felt not ahead of them, but totally at a different level, at
times.
Dr. Wendy Harpham:
Do you talk much about it now?
Laura:
I only talk about it when it comes up in conversation, and people are usually
shocked, because I don't look like a person who had a brain tumor, and so no
one really--everyone's usually shocked, and some people don't believe me. [laughs]
So I only talk about it when it comes up, but I talk about it a lot when I am
referring to my faith and my Christianity and stuff.
Dr. Wendy Harpham:
In what way?
Laura:
In the fact that God helped me through it, and I use it
as like a witnessing tool in a lot of ways. Just to show people
how awesome God is and how he has totally helped me through it,
because I don't think I could have gotten through it with no
problem without Him.
Dr. Wendy Harpham:
And you're also teaching people about
cancer.
Laura:
Yeah.
Dr. Wendy Harpham:
Because if they're shocked that you're a
cancer survivor, that means they have an impression or some idea
of what a cancer survivor should look like, and you're teaching
them new ways of thinking about cancer survivorship.
Laura:
Definitely.
Dr. Wendy Harpham:
Now Katrina, you're the oldest of today's
group. You were only 23 when you were diagnosed.
Katrina:
Yes.
Dr. Wendy Harpham:
What do you think having cancer at such a
young age taught you about advocating for yourself? And by
advocating, I mean letting people know what you need and what you
want and the way you want things to be.
Katrina:
[laughs] Well, I've always
been the type to let them know, anyway!
Dr. Wendy Harpham:
Were there times during your illness that
you had to advocate for yourself to get your needs taken care of,
to make people understand the symptoms that you were experiencing
and how to get them better, if possible?
Katrina:
Sometimes, but my mom is the type that she was right
there with me all the way. [laughs] Even--and the others may
understand this--even at times when I may not have wanted her to
be. [laughing]
[laughter]
Katrina:
And I say that in the most loving way! But like, I
believe Laura said, my parents, well, my mother goes with me to
all of my visits. The hospital that I visit is a couple of hours
away from where we live, and every time we go, she and my husband
both go, and we have learned just as far as advocating with the
doctors that you have to ask questions. They're not going to just
offer information, and I know they don't always think to tell you
everything, but we've just learned you've got to ask your
questions. We take our legal pads and we write down our questions
between visits, and take them with us and make sure we ask all our
questions.
Dr. Wendy Harpham:
Now, how does that work at your visits?
Katrina:
Oh, it works great! [laughs]
Dr. Wendy Harpham:
So, the doctors welcome your questions?
Katrina:
Most of them do. We have had a couple of times, it was mostly back in the beginning,
that the doctors seemed to be a little annoyed that my mother was with me, since
I was of an adult age, but still, you know, 24 still isn't necessarily old enough
to really understand and really be able to comprehend and understand everything
they're saying.
Dr. Wendy Harpham:
And these were big issues.
Katrina:
Yeah, yeah!
Dr. Wendy Harpham:
Even if you're 55, it helps to have a loved
one with you.
Katrina:
Exactly! Everybody needs--we still, anybody we know
that ends up in a similar situation, any type of illness. Take
somebody with you to the doctor so, you know, you've got at least
two versions of what's being said. Like I said, we used to have
five people in the room with us. My brother, in the beginning, he
used to go to all my visits with us. So it would be my mom, my
dad, my husband and my brother and me, and we would all come out
of there with something different.
Dr. Wendy Harpham:
Five sets of ears, five sets of eyes.
Katrina:
Yeah! We'd all come out of there with a different
interpretation of what was said. So you've got to have at least
one other person with you.
Dr. Wendy Harpham:
Now Katrina, how did you deal with doctors
who were not enthusiastic about you bringing company?
Katrina:
It didn't bother me. I still take everybody. Anybody
who wants to go with us, we take them! [laughs]
Dr. Wendy Harpham:
So, it's a matter of taking care of your
needs, not the doctors' needs?
Katrina:
I will say that one of the doctors that we did not
have a good relationship with, I do not see anymore. So, we did
kind of cut that relationship and found someone else that we do
have a better relationship with.
Handling Loss at a Young Age
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Dr. Wendy Harpham:
One of the hard things you all have dealt
with is loss and fear. Now loss is inherent to the human
condition, but typically there are many losses specific to the
cancer experience. All three of you sustained a series of losses
following your diagnosis, not the least of which is that blissful
state of immortality that most young people feel. You were dealing
with serious health concerns, changes in your physical appearance
and uncomfortable procedures, while your friends were going to
school or starting out in jobs and enjoying the social scene. So
let's talk a bit about those losses. Laura, what losses hit you
the hardest as a 14 year-old with brain cancer?
Laura:
Definitely not being able to
go out, like you said, and do all the things that your friends are doing, because
like I said before, it was my ninth-grade year. So it's your first year of high
school, and you want to do all the stuff, and you want to get involved, and
that was a big deal to me. After a while I started getting very--because I was
always in the house, and I had to stay home for a long time. And I was getting
just very antsy, and I wanted to go out.
Dr. Wendy Harpham:
So, cabin fever?
Laura:
Yes. [laughs] A little bit of that.
Dr. Wendy Harpham:
What about loneliness?
Laura:
Honestly, I never felt loneliness, because my family, I
have a big family and they're so supportive, and we always are
hanging out together, and we never really get sick of each other.
And so it's really neat. My brother and sisters were really
supportive, and my mom and dad.
Dr. Wendy Harpham:
So, you had lots of people company. You just
weren't able to do the social things.
Laura:
Exactly. I think around that time, actually, "Titanic"
came out, and that was my big deal. I couldn't go see it.
[laughs]
[laughter]
Laura:
And everyone else got to go see it like five times.
Dr. Wendy Harpham:
Looking back, would you do anything
different about that situation?
Laura:
No, because as much as I wanted to go out and was
annoyed that my parents wouldn't let me, and they had all good
intentions and I think I just would have hurt myself worse. So no,
I wouldn't have changed anything.
Dr. Wendy Harpham:
Now Katrina, what losses hit you the hardest
as a 23 year-old with cancer?
Katrina:
Well, once I had the vision
loss and not being able to drive, there's that independence thing again [laughs],
and I guess the child factor. The doctors have suggested I not have children.
Dr. Wendy Harpham:
Because?
Katrina:
Because the chemotherapies that I've had may have
damaged the eggs. And so if I were to conceive a child, it could
have deformities, which any child can, but--and just the factor, I
think, of hormones that may spur the tumor to come back or
something of that nature. So right now--in fact I had a friend,
you know, have a baby yesterday. So it's just, like you said,
friends are going through these things, and it's just
difficult.
Dr. Wendy Harpham:
Can you describe what feelings you have?
Like yesterday, what did you think about your cancer when your
friend had this child?
Katrina:
Well, of course, I was happy for her, but it was just
one of those topics that upsets me. I don't really think about the
cancer so much, just that it's something that I can't do. And I
know people say, "Well, there's adoption," and my husband and I
have thought of that, but it's still, you know, I'd like to have
that part of me.
Dr. Wendy Harpham:
What helps you when you're dealing with one
of these losses? What has helped you most adjust to this idea that
you may never have children of your own?
Katrina:
I don't know if I've found it yet, to be honest.
Dr. Wendy Harpham:
What have you done to try to learn about it
and adjust to it and grieve the loss?
Katrina:
I've done research to see--well, I've tried to do
research. I haven't found anything on the Internet about women who
have had brain tumors or who have had chemotherapies and then gone
on to have children. It's information that I've just not been able
to find.
Dr. Wendy Harpham:
Have you gone for second or third opinions
to other doctors about this issue?
Katrina:
I have seen for other problems--I do have a
gynecological oncologist, and in fact at our last visit, or my
last visit to him, he asked me if my husband and I were still
interested in having children, and I said, "Yes, but, you know, my
doctors suggest against it." And he made the comment that he
thought we could prove them wrong. So that's something that I need
to get back with him and find out what he's thinking about.
[laughs] I just haven't been able to do that yet. He kind of
flabbergasted me when he said that.
Dr. Wendy Harpham:
So, this is a very active topic for you?
Katrina:
Yes.
Dr. Wendy Harpham:
A very emotional topic for you.
Katrina:
Yes.
Dr. Wendy Harpham:
And it sounds like getting information about
having children after brain cancer, after your types of
treatments, and also in general--but also your particular medical
situation--to get other opinions, more information about what this
means for you. Now, have you heard of the organization called
Fertile Hope?
Katrina:
No, I have not.
Dr. Wendy Harpham:
There are organizations that can help you
learn about and deal with loss of fertility, and this organization
does deal with concerns such as yours.
Katrina:
Hmm.
Dr. Wendy Harpham:
They can help direct you towards resources
that can help you get information and learn what your options are,
and learn how to deal with your situation.
Katrina:
OK. Well, thank you.
Dr. Wendy Harpham:
Talk a little bit about the loss of the
vision and what that means for your driving.
Katrina:
I've lost the left field of vision in both eyes, which
means from the midpoint of either eye to the left it is just a
blind spot, but other than that it's fine. And I think I have
compensated pretty well for that.
Dr. Wendy Harpham:
But is driving not an option from now
on?
Katrina:
Not necessarily. I've looked in the Virginia handbook,
and I think I do have enough vision there to have a restricted
license, meaning I could drive during daylight hours. I would have
to have an automatic car, because of the loss of sensation and the
proprioception. Obviously I would not be able to use a clutch. So,
it's something I am going to be probably looking into soon.
Dr. Wendy Harpham:
So, you have lots of losses in your life, but there's still a level of uncertainty
about them, about how permanent they'll be and how much they will affect your
life over the long term?
Katrina:
Oh, yeah. Like you said, I have lost a lot of especially physical things, but
there are certainly people who are a whole lot worse off than I am, and that's
one thing that I do keep in mind.
Dr. Wendy Harpham:
You know, we learn from our experiences,
both good and bad. What do you think you've learned from your
experiences with loss? Learned about yourself, learned about
life?
Katrina:
I've always thought of myself as a strong person, and
I guess now I'm even more so, but there are times that I think I'm
not [laughs], that I'm not as strong as I used to be. It kind of
goes both ways at times, but I do have the support of my family,
and I've learned how much, you know, we all love each other and
we're all there for each other. I mean, we've had other disastrous
events in our family, not only just with me. And we've just all
learned to be there for each other and support each other.
Dr. Wendy Harpham:
You find out in the hard times.
Katrina:
Yeah.
Dr. Wendy Harpham:
Now, Nicole?
Nicole:
Yes?
Dr. Wendy Harpham:
What losses hit you the hardest?
Nicole:
I'd have to say the same thing
that Laura said, that I was coming out of my eighth-grade year, going into my
ninth-grade year, and actually though I did go to school for about a month in
my ninth-grade year and I just couldn't take it anymore, so I was home-bound.
So it was, I mean, really difficult. Like she says, your friends were all going
out and I wasn't able to.
Dr. Wendy Harpham:
How do you feel that experience of being
left out and experiencing loss as a 13 year-old affected your life
now?
Nicole:
Hmm--
Dr. Wendy Harpham:
Or have you just put it behind you, like a
bad case of the flu?
Nicole:
No, I haven't put it behind me. I mean, I still have my
so-called depressing days where I do think about when I did have
cancer and what I went through, and just how I'm not the same as I
used to be.
Dr. Wendy Harpham:
What usually prompts that?
Nicole:
Usually like if I have a bad day at school or
something.
Dr. Wendy Harpham:
Because of the short-term memory
problems?
Nicole:
Yeah. That really--yeah.
Dr. Wendy Harpham:
What about something that's totally not
related to medical, ever trigger a bad day, like just say a
falling-out with a friend or--?
Nicole:
No. Usually it's at school, like if I have to take a
test, I have to take it separately from the class because, like I
said, I have to use my book and my notes for something to look at,
and I feel, you know, that I don't want to do it in the classroom
with the other students, because I don't want them to look at me
and be like, "Hey, why does she get to use her notes or use her
book?"
Dr. Wendy Harpham:
Do they know why?
Nicole:
Some of them do, but some of them don't. Like Laura
said, if they were to look at me, they would never notice that I
had cancer.
Dr. Wendy Harpham:
How does that make you feel about yourself,
if something exposes your weakness? If you're with someone who
doesn't know you have cancer and something comes up that looks a
little awkward because you can't remember something, do you
explain?
Nicole:
Yeah. If I'm talking about it with someone that knows
and someone comes up and hears, I mean, I'll tell them. I don't
have a problem with telling people. It's just like in my classes,
there are lots of people that I don't know, so I'm not just going
to be like, "Hey, I had cancer." [laughs]
Dr. Wendy Harpham:
So, you don't bring it up if you don't have
to?
Nicole:
No.
Addressing Fears of Recurrence
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Dr. Wendy Harpham:
Let's shift gears a little bit. Fear of
recurrence is practically universal for anyone diagnosed with
cancer. Fear of recurrence, fear that the cancer will return can
have a great impact on your life after cancer. So, let's talk
about dealing with this fear. Nicole, can you share with us what
it's like when you go for your check-ups?
Nicole:
I mean, I fear definitely that
it's going to come back again. I had an episode where they saw a spot in my
lung after treatments and everything, and they thought it was cancer again and
it wasn't. But I fear about it coming again, or if I can have kids, will my
kids have it, and do I even want to have kids, because if they will get it,
I mean--
Dr. Wendy Harpham:
How much do you worry about your cancer
coming back?
Nicole:
I don't worry about it too much anymore, really.
Dr. Wendy Harpham:
So, time away from treatment has helped?
Nicole:
Yeah.
Dr. Wendy Harpham:
How often to you go for check-ups,
Nicole?
Nicole:
About every six months.
Dr. Wendy Harpham:
So, how many days out of the year, I'm just
guessing, would you say you actually worry about your cancer
coming back?
Nicole:
Probably only when I get depressed, and that's probably
about maybe like once a month.
Dr. Wendy Harpham:
And what about as your check-ups
approach?
Nicole:
No, at my check ups I really don't worry about that.
Only maybe when I'm getting my MRI or my CAT scan, maybe I'll
think about it.
Dr. Wendy Harpham:
Meaning while you're having it?
Nicole:
Yeah.
Dr. Wendy Harpham:
But not for the day or week before?
Nicole:
Uh-uh [no]. Only when I'm just lying in the tube.
[laughs]
Dr. Wendy Harpham:
What about that recurrent scare you had, where they thought there was a spot
in your lung that might be cancer? Did that change you at all?
Nicole:
Yeah. We were all pretty scared about it, and they had us run more tests and
had to do a bone scan and all this, and it was actually really, really scary.
Dr. Wendy Harpham:
Some people, after a cancer scare, will be
more scared after that, and other people are less scared after
that. What do you think happened with you?
Nicole:
Well, after it wasn't cancer, it was actually a relief.
So I just don't worry about that anymore.
Dr. Wendy Harpham:
What about you, Laura?
Laura:
When do I worry about it?
Dr. Wendy Harpham:
Yeah, how much of an issue is fear of
recurrence?
Laura:
I know that after the surgery,
it crossed my mind every now and again. The only time I really think about it
or have a concern is like when I have to get an MRI and I have to wait to hear
from my oncologist to hear the results, so it's like that period of time between
there.
Dr. Wendy Harpham:
Right.
Laura:
I think I think about it a lot, a little more, because I
don't want them to find anything, and I don't want him to call and
say--
Dr. Wendy Harpham:
Now, can you describe to us actually what you think or what you feel in those
days between having the scan and getting the results?
Laura:
I know it's changed a lot. I know when I was younger I would get really worried.
Now, I have to go back to my faith again, because I've grown a lot in my faith,
so I don't put as much worry or emphasis on it anymore. I used to get really
scared. Now, every now and again, I'll just think, well, OK, what if it comes
back again? And it doesn't worry me to the point where I'm sick or the point
where I can't do other things, so it just crosses my mind.
Dr. Wendy Harpham:
So, you can eat, you can sleep, you can be with your friends, you can concentrate,
that sort of thing?
Laura:
Mm-hmm. [yes]
Dr. Wendy Harpham:
It sounds like your faith has let you let
go. Have you had any cancer scares?
Laura:
No. No.
Dr. Wendy Harpham:
Now, Laura, you feel so well you don't have
a lot of reminders, but Katrina, you do have a lot of daily
reminders of your past cancer.
Katrina:
[laughs]
Dr. Wendy Harpham:
How do you think that affects your fear of
recurrence?
Katrina:
I really don't think about
it. The only time that I have feared a recurrence was when I was, when I said
earlier, I had reached a toxic level on one of my medications, and I would wake
up in the morning and just opening my eyes, that would make me sick. And I was
off balance; I couldn't walk without holding the wall, and we were all scared
that it had to do with the tumor recurrence. But then we found out that it wasn't
it at all. All I had to do was decrease the dosage of one of my medications,
and within a day or two, things were back to normal. [laughs]
Dr. Wendy Harpham:
Now, what do you think you learned about
your fear, and fear of recurrence in particular, from going
through that cancer scare?
Katrina:
That we're all in it together. [laughs] Because, like
I said, my parents and my husband and I, we all had the same
thoughts, even though at first we didn't share them all with each
other. [laughs] I mean, we later found out we all kind of were
thinking the same thing. But no, other than that, I don't fear
it.
Dr. Wendy Harpham:
So, you're really focused on adjusting to
the changes in your life?
Katrina:
Yes.
How Relationships Can Change through
Cancer
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Dr. Wendy Harpham:
As you mentioned, cancer not only affects
you, it affects the people around you. It affects how you relate
to your family, your friends, even acquaintances and strangers.
Usually we experience both negative and positive effects in one or
more relationships after cancer. Katrina, can you tell us how
cancer has affected your relationships?
Katrina:
In one way it's been rough,
because I've moved back home with my parents. Now that I'm married, my husband
and I both actually live with my parents, and so that's kind of a touchy situation
sometimes, but it's good, too, because we are close.
Dr. Wendy Harpham:
How is it good?
Katrina:
We are close, and my husband gets along with my
parents sometimes better than I do [laughs], and we're just all
there for each other when there is a hard time.
Dr. Wendy Harpham:
How do you deal with the negative sides of
this?
Katrina:
Sometimes I wish I could get in my car and get to
somewhere to be by myself, but I can't do that. [laughs] And we
just do. I don't know how we do it.
Dr. Wendy Harpham:
What about your relationships with
friends?
Katrina:
Friends, like I said, I don't have many friends that
live close by, but the ones that I do still keep in contact with,
say from college, it's still like when we were in college. Like I
said, the girl that had the baby yesterday, we went--another
friend came to get me, and we went up to her baby shower not long
ago, and after ten minutes, it was like we were back in college
again. Everything was the same.
Dr. Wendy Harpham:
Isn't that wonderful?
Katrina:
Yes! [laughs]
Dr. Wendy Harpham:
Now, Laura, how has cancer affected your
relationships?
Laura:
Well, I think definitely it brought
my family closer together, not like they were really far apart or anything,
but it definitely made me appreciate my family more and made me closer to them.
Dr. Wendy Harpham:
What about your friends, Laura?
Laura:
When it comes to my friends, I don't think it affected
my relationships with my friends very much, just because they
didn't--most of my friends really didn't get to deal first-hand,
like my family did, with what I went through. So, only the fact
that they really didn't understand. That's what it comes down to.
And new people I meet today and new friends I make who find out, I
don't think they realize the severity of it, because, like I said
before, I look fine to them, and to them it's just, "OK, you had
a brain tumor and now it's gone," kind of thing.
Dr. Wendy Harpham:
Do you like that?
Laura:
I don't mind it, because I'm kind of the opposite from
Nicole--because I, when people ask me about it, I have no problem
talking about it and telling my story. But I think in a way I
don't like to talk about it, just because I don't want to come off
as wanting someone to feel sorry for me. And I'm not saying that's
how it would come off, but in my own mind--[laughs] I guess I need
to get over that, but I don't want people to think I'm trying to
get attention.
Dr. Wendy Harpham:
Are you embarrassed about it?
Laura:
No, I'm not embarrassed about it. I'll gladly tell
people the story, because in a way I'm proud of it. Not proud of
it--I would not change a thing if I had to go through it again, so
I'm definitely not embarrassed about it, but I think at the time
when I went back to school, I was--because especially with having
no hair in certain places, and that was rough.
Dr. Wendy Harpham:
You were different.
Laura:
Yup. I was definitely different. And I was frustrated
that I couldn't control what other people were thinking. So that
was frustrating.
Dr. Wendy Harpham:
What about you, Nicole? How did your cancer
affect your relationships with your family, your friends?
Nicole:
Well, it's definitely brought
my family closer together. My friends, well, some of them did stop talking to
me. My closest friends, they still stuck by me and talked to me and came over
and everything.
Dr. Wendy Harpham:
How did it make you feel when some of those
friends stopped talking to you?
Nicole:
It made me feel bad, but then I didn't really mind,
because if they were true friends then they would have kept in
touch with me.
Dr. Wendy Harpham:
What happened with them after you got
better?
Nicole:
I still didn't really talk to them.
Dr. Wendy Harpham:
So, it changed that relationship. What about
new relationships?
Nicole:
It was hard, kind of, making new friends, because, like
Laura, I didn't have hair and I wore hats. So it was kind of hard
making new friends, but now that I'm better, it's a lot
easier.
Dr. Wendy Harpham:
I'm curious about one thing that's kind of
come up with all three of you. You were young, and a normal task
of teenage years and young adulthood is to separate from your
family, but the brain cancer put all three of you in a position of
being more dependent on your family than you would be if you had
been healthy. Katrina, how did that play into your normal
situation? Independence?
Katrina:
Oh, well, I actually had my
first symptoms three days before I was supposed to start a new job. I had just
graduated from graduate school the previous May and had my symptoms in August
and my diagnosis was in August, and so I had to move back home. And I did start
my job a couple weeks after my surgery, but then after I got the revised diagnosis
six months later, I stopped working. So it has been difficult to move back home,
because I had been, you know--I had been in graduate school, so somewhat on
my own.
Dr. Wendy Harpham:
And now you depend on others for driving
and--
Katrina:
[laughing] Yeah.
Dr. Wendy Harpham:
All of this--so overall, how has this
affected your sense of independence and the normal growing up and
separating that people do?
Katrina:
Well, there hasn't been a separation. We're all right
here. [laughs]
Dr. Wendy Harpham:
How did you adjust to that change in your
expectations?
Katrina:
There are difficult times, like whenever you just--
whenever you have roommates. It's the same as that. There are
things that people do that get on your nerves and, you know,
things that you do that get on their nerves, and we just all have
to figure a way to balance it all out.
Dr. Wendy Harpham:
Laura?
Laura:
Mm-hmm? [yes]
Dr. Wendy Harpham:
How do you think having cancer affected that
normal separation that would have been going on?
Laura:
I think that in a small way I
might have been different with my family than I am today. My parents were really
good at raising us to be close. So, like I said before, we were close before
my brain tumor, but I think inevitably it made us closer when it happened.
Dr. Wendy Harpham:
You're 20 years old now. Do you feel like
you have separated the way that you wanted to or expected to as a
20 year-old?
Laura:
I am still--I feel like I have separated to the point I
want to from my family. I feel like I'm an individual now, but yet
I'm a very family-oriented person. So, family to me is more
important than a lot of my closest friends.
Dr. Wendy Harpham:
What about you, Nicole? Again, you were just
13 years old.
Nicole:
Again, my family, we're still
really close, but it brought us closer. I mean, I, as you say, like kind of
separated, but I'm still very, very close to my family.
Dr. Wendy Harpham:
Do you feel like you'll be able to separate
in a healthy way over the next few years?
Nicole:
Yeah.
Dr. Wendy Harpham:
And separating doesn't mean that you're not
real tight and intimate and loving with your family, it just means
that as a young adult you do feel independent and separate.
Nicole:
Yeah.
Dr. Wendy Harpham:
Well, we've talked about a lot of painful
topics. Although cancer is bad, surviving cancer is not all bad,
and each of you has mentioned a number of things, some good
things, some positive things, that have come out of your cancer
experience. Before we close, I'd really like to hear about some
positive changes or insights that have happened because of your
illness. Laura?
Laura:
I've recently been wanting to
advocate cancer and just the different types and the things you can do to help
out. I actually set up persuasive speech in my human communications class in
college to persuade people to help out and volunteer for cancer events or kids
with cancer. I'm in school right now to be a nurse, and I plan on being a pediatric
oncologist nurse. Yeah, pediatric oncology.
Dr. Wendy Harpham:
So, your experience has really given you
direction?
Laura:
Mm-hmm! [yes]
Dr. Wendy Harpham:
And a sense of mission.
Laura:
Yes, definitely.
Dr. Wendy Harpham:
Nicole, the positive things from your cancer
experience.
Nicole:
I try to help out, like I said
earlier, with the American Cancer Society Rockin' Relay for Life. I do that
every year, and I try to get as many people as I can to try to help out with
that, too.
Dr. Wendy Harpham:
Now, are you one of the captains?
Nicole:
Yes.
Dr. Wendy Harpham:
Well, good for you!
Nicole:
I'm a captain every year.
Dr. Wendy Harpham:
That's a lot of work!
Nicole:
Yeah.
Dr. Wendy Harpham:
And a lot of fun.
Nicole:
A lot of times I try to do competitions with the
students at my old high school. We try to see who can raise the
most money and do a lot of things at the high school, you know,
raffles and stuff.
Dr. Wendy Harpham:
You mean for the Relay for Life?
Nicole:
Yeah, to try to get money.
Dr. Wendy Harpham:
And that money goes to the American Cancer
Society?
Nicole:
Yeah.
Dr. Wendy Harpham:
That's wonderful. Any other positive things
from your cancer experience?
Nicole:
Just what I said earlier, just try to live life the
best and not take life for granted.
Dr. Wendy Harpham:
Katrina?
Katrina:
I believe it was Laura was
saying, "I've been involved with Relay for Life."
Dr. Wendy Harpham:
Now, are you a captain also?
Katrina:
I'm not a captain, but my mom is the captain and she
works hard at it. She sends out letters every year to everybody
she knows, and she is usually one of the top earners in our area.
Dr. Wendy Harpham:
And we'll hope for good weather.
Katrina:
Yes! [laughs]
Dr. Wendy Harpham:
Any other positive outcomes from your cancer
experience?
Katrina:
Well, there have been a lot of people that have been
diagnosed with brain tumors in our area, and with all the people
my mom knows and that I know, we've been able to give them a lot
of information and, you know, tell them our story and hopefully
put them on a successful track, and I have spoken at some of the
Relay for Life events.
Dr. Wendy Harpham:
So, you're using your experience to make it
better for other people?
Katrina:
Yes.
Dr. Wendy Harpham:
Make their journeys easier and more
hopeful.
Katrina:
Yes. And especially on the Cancer Survivors Network.
In fact, just before I called in, earlier I finished typing out my
history to someone who had emailed me, and his sister was just
diagnosed. So hopefully I can get him some information to help
her.
Dr. Wendy Harpham:
So, you set up a Web site on the Cancer
Survivors Network?
Katrina:
Yes, I did.
Dr. Wendy Harpham:
And then, do you use the chat room there,
also?
Katrina:
I have not done that yet, but I have had several
emails and have been talking to a few people.
Dr. Wendy Harpham:
Because there are a number of different
features on the Cancer Survivors Network that allow you to connect
with other people, give back to others, and if you're the person
in need, there are lots of ways to get information and support and
nourish hope.
Katrina:
OK.
Dr. Wendy Harpham:
In closing, I want to thank our guests,
Katrina, Laura and Nicole, for graciously sharing their
experiences and their insights with us today. Hopefully this
discussion will help you think about and talk about your own
concerns in healing ways. You can listen to other discussions we
have available on the Web site at www.cancer.org and on our toll-
free telephone at 1-877-333-HOPE. For the American Cancer Society
Cancer Survivors Network®, I'm Dr. Wendy Harpham, wishing each
of you a great day, today and every day.
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