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Talk Shows : Collected Stories: Ovarian Cancer
Collected Stories: Ovarian Cancer
Recorded January 27, 2003
Sandi's Story: Speaking Up for
Ovarian Cancer Survivors
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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. In
this program, I'll be talking one-on-one with four survivors
of ovarian cancer who are in different stages of treatment.
As a cancer survivor myself, I am pleased to speak with our
guests about: self-advocacy in the medical setting; the
effect of illness on family relationships; advocating for
ourselves and others, as well as other topics that arise in
the course of our discussion.
Dr. Wendy Harpham:
I'm speaking with Sandi, a 51 year-old survivor from
Ontario, Canada. Sandi is married and does not have
children. Hi, Sandi.
Sandi:
 Good
morning. How are you?
Dr. Wendy Harpham:
Good. In 1999, you experienced abdominal bloating that
didn't go away. You went to a doctor, who referred you to a
gynecologist. You then had a hysterectomy, and a large tumor
was removed that was diagnosed as ovarian cancer. After
undergoing chemotherapy and radiation therapy, all of your
exams and tests and scans have shown you have had no cancer,
ever since. Any other additions to your history?
Sandi:
Subsequent to that, I had the genetic testing for the
ovarian and breast, and also the genetic testing for the
colorectal, ovarian and uterine link.
Dr. Wendy Harpham:
Have you gotten those results yet?
Sandi:
I've received the results for the ovarian and breast
testing, and that was negative, but I have the initial
results from the colorectal ovarian, which is the hereditary
non-polyposis colorectal cancer link, and the initial
results are positive, which I suspected.
Dr. Wendy Harpham:
So, you're a survivor of ovarian cancer, and now you know
you have an increased risk of colorectal cancer.
Sandi:
82 percent risk.
Dr. Wendy Harpham:
I've also learned that in 2002, which was two years after
completing your cancer treatment, you were selected to
present an advocacy speech to the [Commission on the Future
of Health Care in Canada], on behalf of ovarian cancer
survivors in their effort to better access health care.
Sandi:
That was a very overwhelming experience for me, because in
Canada our health care system is undergoing review, and it
was important to advocate on behalf of ovarian cancer women,
and this gave me the perfect forum to do so. And it is of
historical significance. In addition, I was just recently
accepted as a patient contributor to the Cochrane
Collaboration, and that's an international forum that does
reviews for all--systematic reviews of cancer research.
Dr. Wendy Harpham:
Well, I think you're going to be able to share some
interesting insights, not only as a cancer survivor, but as
an advocate. Sandi, how do you feel that your being a woman
affected how your doctors and nurses interacted with you? In
particular, do you feel it affected how seriously you were
taken and how much you were respected by the health care
professionals involved in your evaluation and treatment?
Sandi:
No. In all honesty, I can never say that being a woman ever
interacted negatively. I always felt respect from the
doctors, so no, that wouldn't have been a problem for
me.
Dr. Wendy Harpham:
With some of the women you've met through support groups and
your advocacy work, has that been an issue?
Sandi:
Yes, I believe maybe I was fortunate, because I do hear on a
regular basis, not sure so much if it's a woman issue but
it's a disease issue, in that the signs and symptoms of
ovarian cancer, of course, are somewhat elusive, and many
women come to their doctors with complaints, and they are
disregarded. So, I'm not so sure that it's being a woman,
but simply that's it's a fact of the disease, ovarian
cancer.
Dr. Wendy Harpham:
That the symptoms of early ovarian cancer are the exact same
as symptoms of very benign conditions like gas or, you know,
that sort of thing?
Sandi:
Yeah. I mean, we understand it's difficult, a difficult
disease to diagnose, but on the other hand, we should all be
aware at this point that there are certain symptoms, and
that ovarian cancer should be put on the list of things to
check for when a woman presents herself with
difficulties.
Dr. Wendy Harpham:
What do you think you would do differently if you had those
early symptoms and went to your doctor today?
Sandi:
I don't know that I would do anything different, because the
difficulty with my situation was that I underwent emergency
surgery and had never heard of ovarian cancer. I would
expect, though, that I would have been requesting, had I had
the knowledge, to be seen and referred directly to a
gynecologic oncologist, which is very important.
Dr. Wendy Harpham:
So, having that initial evaluation and surgery by a cancer
specialist--
Sandi:
Yes.
Dr. Wendy Harpham:--as opposed to a general surgeon.
Sandi:
Exactly. By a gynecologist, and the clinical evidence now,
the evidence base medicine tells us that women survive
longer with specialized care.
Dr. Wendy Harpham:
How do you think you would do things differently regarding
your recovery from your surgery and your early
survivorship?
Sandi:
I had a very good recovery, because I had not been seriously
ill in the past or had any other surgeries, and being 47 at
diagnosis and I was in good health and had, I would think, a
healthy lifestyle, that I recovered quickly. That's not
always the case for some women, you know, who have other
health issues in addition to the ovarian cancer.
Dr. Wendy Harpham:
You were a young woman to have such a serious illness. How
did your cancer affect your relationship with your
husband?
Sandi:
My husband is somewhat laid back and doesn't deal well with
the ovarian cancer. He's always there as support if you need
him. If I needed to go for treatment or needed him to take
me somewhere, that was never an issue. But he's not someone
who likes to talk about the subject, and that's his
personality. And it does not mean, of course, that he's not
supportive, it's just that he doesn't like to talk about
ovarian cancer.
Dr. Wendy Harpham:
So, he's supportive with the practical concerns, the
transportation, the housework?
Sandi:
Yes.
Dr. Wendy Harpham:
But the emotional concerns have been kind of off-limits?
Sandi:
Yes. And that's a concern, but you see, there are very many
places that you have to understand and appreciate, and I do
know where he's coming from. So, I find my emotional support
elsewhere, and that is through the ovarian cancer
community.
Dr. Wendy Harpham:
Tell me more about that.
Sandi:
When I was first diagnosed, of course, like I said, I had
never heard about ovarian cancer, so I right away went on to
the Internet and started to do some searching. I was very
fortunate, in that I came upon an ovarian cancer
international online support group, and from that point
forward, I have all the emotional support that I need,
because there's over 1,200 women in Canada, the U.S., the
U.K., Israel, Australia, and we formed a fabulous network,
and it's emotional support and it's information gathering.
And I've met many of these women face-to-face over the last
couple of years.
Dr. Wendy Harpham:
It sounds like you have been able to get your needs taken
care of by looking elsewhere, but I'd be interested in how
you found out or realized that it was not going to be easy
to talk with your husband about the emotional issues, and
how you realized you needed to look elsewhere?
Sandi:
Well, I came to know about that through life experience in
my marriage, and we don't all have the same capacity or the
same goals. I'm a very, I wouldn't say aggressive, that's
not the right word, but everything that I do, I approach in
a forthright manner, and if there is a difficulty, I tackle
it head-on. It was always my approach that, well, we have a
problem, let's understand it and let's solve it. I didn't
realize that you couldn't actually do that, totally, with
ovarian cancer. With my husband, he's always been that way,
and it doesn't mean that he's not caring and compassionate,
it just means that he's not able to verbalize.
Dr. Wendy Harpham:
But having cancer is a very emotional experience, so how do
you and your husband deal with it, if you're having a down
day or if you're afraid, or if you're unhappy?
Sandi:
I let him know if I'm unhappy, and his approach is
acceptance of that. And I'm very fortunate that he's able to
understand that, even though he doesn't give me a lot of
feedback. It's something that I think that if you have a
good relationship, you develop and you work with that
relationship. It works fine for us.
Dr. Wendy Harpham:
What were the most difficult emotional issues for you after
your diagnosis?
Sandi:
I think not so much difficult, I think it was more of a
surprise, because I didn't believe that we had any cancer in
our family, and I thought surely this can't be me, because
we don't have any cancer. The unfortunate part was six
months after that, another sister was diagnosed with
carcinoma of the appendix, which is colorectal-related, and
then a year after that, which was a year uneventful, my
other sister was diagnosed with colorectal cancer.
Dr. Wendy Harpham:
This is your younger sister?
Sandi:
My younger sister. So, that's three out of five of us that
now have, within a two-year period and all in our 40s,
cancer diagnoses. So, the emotional part for me, when I was
first diagnosed, was in fact, I'm very lucky because that
means from a family that doesn't have any cancer, I'm
probably it for the family, which made me happy, because
that would then say that the rest of the family was OK, but
of course that was wrong. And I was about to find out about
that. That was the hardest part, I think. I wasn't so
concerned about myself.
Dr. Wendy Harpham:
What about thinking about the future? You said you went to
the Internet, you went to support groups. I'm sure you read
some pretty terrifying facts about ovarian cancer.
Sandi:
Fortunately for me, I always think that's somebody else. I
do have to admit reading all the statistical information in
the clinical. But I always say to myself, "Well, that's
somebody else, and I can survive it." And I have so far.
Dr. Wendy Harpham:
And there is truth to that. That's not just a mind game.
Statistics are based on past groups of patients. They are
not based on groups of you, and they're not talking about
people who are getting your current treatment, that sort of
thing, and statistics don't take into account new treatments
that are coming down the pike.
Sandi:
I think it's more than that, because if you even use the
statistic of 50 percent. Fifty-fifty, you're either going to
recur or you're not. I just automatically assume that I'm
going to be in the 50 percent that's not going to recur. I
mean, why would you assume you're going to be in the worst
case, when it's just as easy to assume you're going to be in
the best?
Dr. Wendy Harpham:
Now, what about your husband? Does he tend to be an optimist
or a pessimist?
Sandi:
He doesn't really give an opinion. He knows that it's
serious, but I just think that he's hoping for the best. But
again, he doesn't really verbalize it.
Dr. Wendy Harpham:
In what way has your illness affected him, his work, his
relationships with other people?
Sandi:
It's obviously caused him stress, and I know he went through
a great deal of stress, but as time goes on, it's gotten
easier for him. What's very good about our relationship is
that even though he isn't intimately involved in the disease
on a day-to-day basis, he allows me the ability to continue
to do what I need to do to work patient support and
advocacy. So, that is a very large and worthwhile unspoken
support.
Dr. Wendy Harpham:
Can you name any other good things that have occurred in
your relationship because of your illness?
Sandi:
I would think that this support is the main feature, and the
ability to allow me to do what I can on a day-to-day basis
for other people. I mean, if I didn't have his support in
that, then it would just cause further complications, and
where would I be? I would be having to battle two battles as
opposed to one.
Dr. Wendy Harpham:
And it really is tremendous, since this is not his style,
that he supports you doing it. I mean, he doesn't want to
talk about cancer a lot, but it sounds like he really
supports you devoting a lot of time, energy and attention to
cancer advocacy.
Sandi:
And he has sacrificed himself, because many times I'll say,
"I'm sorry but, you know, we have plans to go here, and
something's come up and I can't," and he never complains
about that.
Dr. Wendy Harpham:
Which is a tremendous show of love and support. Now, how
has your relationship with your sisters who are dealing with
cancer changed?
Sandi:
That's a real problem, and I guess--
Dr. Wendy Harpham:
In what way?
Sandi:
Communication problems, because we all deal with it in our
own way. My one sister is very seriously ill and prefers not
to have it enter into her daily life.
Dr. Wendy Harpham:
This is the younger sister with colorectal cancer?
Sandi:
Yeah, and it's not my approach. My approach is: there's a
lot of need out there, and we need to do--now that we're OK
for ourselves, we need to do for others. That's really
important, because there is a lot of unmet need.
Dr. Wendy Harpham:
So, she wants to put it behind her, whereas you want to do
what you can to make it better for other people?
Sandi:
Yeah, and I understand that not everybody is like me. So,
that's where we differ.
Dr. Wendy Harpham:
So, how do you deal with that difference of need?
Sandi:
It doesn't get discussed. I mean, you can't force a person
to discuss something that they don't want to discuss.
Dr. Wendy Harpham:
Is there any way this shared experience has brought you
closer?
Sandi:
No. I thought at one point about a year ago it had, because
I was trying to say to her, "Here, try this. Try this. I
have known other women where this might have helped." And
so, at that point, she was taking the information and making
use of it, which made me very happy, but now we're into a
situation where she is not wanting to talk about it.
Dr. Wendy Harpham:
How has your understanding of how you can be a hopeful
sister to her evolved over the past year?
Sandi:
I'm finding that people, if they want your help, they have
to be in a position to express that to you, and if someone
doesn't want your help or desire to have your help at a
certain point, then you have to let go and wait for them to
approach you.
Dr. Wendy Harpham:
Are you OK with that?
Sandi:
No, because that's not my personality, but the problem is
again that you can only do so much.
Dr. Wendy Harpham:
Sandi, we've talked about family. How has your relationship
with your friends changed since your diagnosis?
Sandi:
I would say that my relationship with my close friends has
not changed either prior to diagnosis or after, and this is
not an unusual situation, I don't think. My friends would
call every day when I was going through chemo, and they
would leave a message and just say, "I know you're probably
not feeling like answering the phone, but I just wanted to
let you know I'm thinking about you." And they would do this
day after day after day.
Dr. Wendy Harpham:
So, you were really close with your friends and had a lot of
contact before your diagnosis, and this continued, just
reshaped for the circumstances.
Sandi:
Yes.
Dr. Wendy Harpham:
So, this continued? Were you surprised by any of the
reactions or responses of friends?
Sandi:
I guess I was overwhelmed with their continued support, I
mean, because I hear all the time from women, or could be
any cancer patient, that when the word "cancer" comes up,
that some of their friends, they're so frightened themselves
that they leave their friend, and that's not the way it
should be. So, when I hear that, I feel very fortunate, and
I'm very lucky to have the friends that I have.
Dr. Wendy Harpham:
Was it ever a burden to keep them informed or respond to all
their graciousness?
Sandi:
No, I wouldn't consider it a burden, I would consider that
sometimes I wasn't feeling like talking, but I can say I'm
very thankful that they understood that. I mean, that's not
something easily understood when someone is ignoring your
telephone calls, but I do know that they understood, and I
appreciate that, even today.
Dr. Wendy Harpham:
So, you were direct with them? You said, "I just don't feel
like talking today." And they'd be, "Fine. I understand
that."
Sandi:
Absolutely, and you know, that is amazing in itself.
Dr. Wendy Harpham:
Tell me a bit about how you found support from other cancer
survivors.
Sandi:
When I was first diagnosed and I went online, I sent a
message and said, "This is my name, and I have just been
diagnosed with clear cell ovarian cancer, and I don't
understand any of this." And within a couple of minutes I
must have had 30 responses from women, email responses, and
I was profoundly moved. And the reason for that was that
there were so many women who were seriously ill, and some
were, as a matter of fact, in very advanced stages and died,
that took the time to respond to my need, at a time when
actually they needed more support than I did, I think.
Dr. Wendy Harpham:
How did it help you?
Sandi:
It gave me a profound sense of respect for these women, and
it's not possible to put into words the compassion that I
feel for them, because they gave to me in my time of need,
when they were in desperate need themselves.
Dr. Wendy Harpham:
Do you remember some of the things they said that helped
you?
Sandi:
Mostly they just said, "You will get through this." I mean,
I didn't even have an understanding of what is "clear cell."
I didn't have an understanding of what is "stages." I
couldn't understand the basic terms of the disease, and so
they explained it to me in very simple terms. What is stage,
what is grade, and what should you do, what your doctor
should be doing, what tests you should be looking for.
Dr. Wendy Harpham:
So, they kind of gave you a crash course on new diagnosis
and evaluation?
Sandi:
Exactly, and in very simple terms that I could
understand.
Dr. Wendy Harpham:
Did you have any concern that some of the information might
have been wrong or inaccurate?
Sandi:
No, because if you get responses, if you get 10 or 15
responses with the same response to one particular question,
you know that there has to be something. I mean, if I had
one particular question and I got 30 different types of
replies, then you would think, well, there's something wrong
here.
Dr. Wendy Harpham:
So, it was all consistent.
Sandi:
It was consistent.
Dr. Wendy Harpham:
It seemed pretty straightforward.
Sandi:
It was consistent information, and most importantly, from
women who have already been there.
Dr. Wendy Harpham:
How did the role of this Internet support and this support
group support evolve over your evaluation and treatment and
recovery?
Sandi:
It got stronger, because I then was able to meet women face
to face, and the bond is--I can't express the bond. And I
always say that as a child I never had any heroes, but I
have many heroes now, and I have such great respect and
compassion, overwhelming respect for these women, because,
you see, I've only had one surgery, one chemo and one
radiation therapy. There are many women who have had
multiple surgeries, multiple chemos, and I have the greatest
of respect for that they are doing.
Dr. Wendy Harpham:
How does it affect you when you hear stories with unhappy
endings, with patients who have done everything right and
their cancer is progressing, or if you have contact with
someone who dies?
Sandi:
I lost 11 close friends--not Internet--close friends last
year to ovarian cancer. I spent half of my days in
palliative care units, and there aren't the words to explain
to you how upset I get over these losses. And they continue
today, and I have friends who I know are not going to make
it this year.
Dr. Wendy Harpham:
How do you deal with that, being an ovarian cancer survivor
yourself?
Sandi:
I don't think of myself. I think about--it's not fair. Who
said life was fair, we know that's not right, but I can't
understand why the whole world is not paying attention to
ovarian cancer if they knew what I know.
Dr. Wendy Harpham:
So, you suggest that you're channeling your emotional reaction to advocacy,
to trying to make it better?
Sandi:
Exactly. What else can I do? I am well, and as long as I'm well, I'm going to
spend every second of my time in order to advocate for other women. It's all
that I can do and, you know, I owe it to these women to do that. There are many
women who have sacrificed in the past by going through clinical trials so that
I could be alive today. We owe it to others to give back.
Dr. Wendy Harpham:
Do you ever have trouble deciding what part of your own
experience to share in your public advocacy and what you
should keep private?
Sandi:
No. I used to be a very, very private person. I realized in trying to advocate
for ovarian cancer that I would have to change. That privacy would not help
our cause. So, there is absolutely nothing that I will not talk about now.
Dr. Wendy Harpham:
Wow. That's a big change in your life. [laughs]
Sandi:
Oh! I have friends that I used to work with, and they would
say, "I've known you for ten years, and I've worked with you
for ten years, and I don't know anything about you." Now,
everybody knows everything and people that I don't even
know.
Dr. Wendy Harpham:
[laughs]
Sandi:
[laughing] So it took a while for me to get over that
privacy issue, but you know, what is privacy? I mean, we all
have the same body parts.
Dr. Wendy Harpham:
And this is a real issue for ovarian cancer survivors.
Sandi:
Well, of course.
Dr. Wendy Harpham:
The privacy versus the public.
Sandi:
Not everybody can do it, but I just don't know of any better
way that I can do it, and so that's the path that I've
chosen.
Dr. Wendy Harpham:
I have one other question, Sandi.
Sandi:
Mm-hmm?
Dr. Wendy Harpham:
What role has humor played in getting you through your rough
times?
Sandi:
Oh, it's a very, very large part, because I had a
conversation, actually last week, with a woman, and she
said, "You know what? We always talk about, you know,
constipation, but I've got like diarrhea. Sandi, this is
just totally disgusting to talk about." I said, "Get out of
here! Diarrhea?" I said, "When I come to visit you next
week, we're going to bring up the subject of diarrhea,
because I'm going to guarantee you [laughing] that half of
the people that you're sitting with there will have had
diarrhea, and you know, it's just a matter of somebody
bringing up the subject!" And she said, "Oh, my God, you
won't do that!" And I said, "Yes, I will." [laughing] And I
mean, the thing is, too, I'm bald, so when you have chemo
and you have no hair, it doesn't just mean hair on your
head, which is--the public thinks you just lose the hair on
your head. You don't. You lose every single hair on your
body, so being fair, if you have no eyelashes and no
eyebrows, you have no face.
Dr. Wendy Harpham:
Yeah.
Sandi:
I mean, that's a scary thing, and I mean, until you look in
the mirror, it doesn't mean anything, but then you scare
yourself half to death. So, that's pretty funny. You do get
over it. You paint on your face and away you go!
Dr. Wendy Harpham:
Well, if you had to close with one thing that you've found
to be most helpful in coping with your cancer, what would
that be?
Sandi:
I have to turn that around and say the most helpful thing to
me was what other women did for me.
Dr. Wendy Harpham:
Accepting help from other people then, Sandi?
Sandi:
Not so much accepting help, but just acknowledging that so
many others who were ill went out of their way to help me.
That helps me cope. It gives me strength.
Dr. Wendy Harpham:
And then you turn around and do it for someone else.
Sandi:
Well, of course.
Dr. Wendy Harpham:
Sandi, you're a wonderful guest and I wish you only good
things.
Sandi:
And I thank you so much for the opportunity, because these
are very important issues, and I think quite often ovarian
cancer is not highlighted sufficiently enough. So, it's a
great opportunity to speak for ovarian cancer.
Dr. Wendy Harpham:
Well, it sounds like you're changing that! [laughs]
Sandi:
I hope so!
Julia's Story: Toughing out Rough
Times
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Dr. Wendy Harpham:
Also speaking with me is Julia, a survivor who is 32 years
old. Julia is originally from Hungary and has been living in
the United States since 1989. She lives in Florida with her
husband. Welcome, Julia.
Julia:
Hi.
Dr. Wendy Harpham:
Now, you were diagnosed with ovarian cancer in 2002, after
experiencing symptoms of those similar to early pregnancy,
such as frequent urination and nausea. You have never had
children, and you had been trying to get pregnant, so you
did a few pregnancy tests, which came back inconsistent.
Eventually you saw your gynecologist, who ordered an
ultrasound and an MRI. And that MRI showed signs of cancer,
so your gynecologist referred you to an oncologist. You then
underwent a hysterectomy, and two tumors were removed from
your ovaries, one of which was cancerous. Some lymph nodes
nearby were also removed and found to be cancerous. You've
undergone chemotherapy and are now in a complete remission.
Thank you for talking with me today, Julia. Julia, how do
you think that being a woman affected how your doctors and
nurses interacted with you? Specifically, do you feel it
affected how seriously you were taken and how much you were
respected by the health care professionals in your
evaluation and treatment?
Julia:
Well, at first I wasn't really trustworthy with my doctor,
but then eventually, you know, he made me feel comfortable,
and because I didn't know too many things about this
disease, I was questioning his knowledge. But after a while,
you know, after we had the surgery, I began to trust him
more and more, and I know that he is knowledgeable.
Dr. Wendy Harpham:
What was his response to your initial question?
Julia:
First, I didn't know why he was hiding--I mean, he wasn't
really hiding information from me, but I guess he didn't
want me to worry, and he didn't want to give me information
that could be misunderstood. Or maybe it's because I'm from
a different country and because of the language. Maybe that
could be also why he didn't tell me things, or because he
just didn't want to frighten me.
Dr. Wendy Harpham:
So, you would ask a specific question and not get an
answer?
Julia:
I wouldn't get a direct answer.
Dr. Wendy Harpham:
Can you give me an example?
Julia:
Well, like right now I have a lymphocyst.
Dr. Wendy Harpham:
Which is just a little collection, like a cyst, of lymph
fluid.
Julia:
Right, because they had removed some lymph nodes. And I
asked him about it, if this is normal, because my mom went
through also a hysterectomy, and in Europe they put like a
drain in after the surgery. And when I had the surgery, I
didn't have the drains coming out, and my sister was here
from Hungary with me when the surgery was done, and she was
asking me also, "Where are the drains?" And I said, "There
are no drains." And I asked the doctor why they didn't put
in a drain, and they said that--I didn't really get a
correct answer, and I don't know if it would have been
necessary or it would be a normal procedure here in the
States, too, or if it is something that is not really
necessary to be in there. So my thinking was that maybe
that's why I have the liquid, the collection of the
lymphocysts, because I didn't have a drain put in after the
surgery.
Dr. Wendy Harpham:
How did you deal with it when you felt that your questions
weren't being answered directly, Julia?
Julia:
To tell you the truth, I didn't know until this day that I
didn't have an answer, until this day.
Dr. Wendy Harpham:
Now, did that happen with other questions that you had, or
just that one?
Julia:
This is more the one that I can remember. To tell you the
truth, I don't really remember. It was a year ago, and I
don't really remember other specific questions, but yeah,
there were some questions that I didn't get answered.
Dr. Wendy Harpham:
Were there other ways that you felt your doctor either
wasn't respecting you or wasn't addressing your needs?
Julia:
No, he was. He was good doctor. It's just that I guess maybe
I wanted to know too much. I don't know how to explain this.
[laughs]
Dr. Wendy Harpham:
What do you think that your rights or needs are as a
patient?
Julia:
I want to know everything.
Dr. Wendy Harpham:
And do you feel your doctor understands that, that knowledge
helps you?
Julia:
See, that doctor is no longer my doctor anymore.
Dr. Wendy Harpham:
What happened?
Julia:
Oh! The company, the insurance company that I have--I'm on
COBRA right now, and last year on the first of July, they
switched from one company to another, and my old doctor who
did the surgery, who did the chemotherapy and everything, he
was treating me, he no longer accepted the new insurance
company. So I had to find a different doctor, but in the
meantime, we had moved here to the other side of Florida,
and now I'm having a problem with the insurance company.
Because I'm on COBRA, I can't use my insurance here in this
particular county. I have to go drive back 100 miles, over
the other side, to have even blood drawn or have even a
doctor to see me.
Dr. Wendy Harpham:
So, do you have a doctor right now?
Julia:
Well, I do have a doctor, but I went to see him twice, and because of the insurance
not resolved yet, I don't really have a [regular] doctor.
Dr. Wendy Harpham:
How are you taking care of these financial problems?
Julia:
I'm on Disability, I have one more year.
Dr. Wendy Harpham:
Have you gotten any practical information or used any
resources to help you with these financial problems?
Julia:
Not financially, no.
Dr. Wendy Harpham:
Julia, if you had to go through it again, you know, you
talked about having difficulty getting questions answered,
if you had to go through it again, is there anything you'd
do differently?
Julia:
Not with my old doctor, no. I think he was just out there
for the benefit of me. If he didn't give me a flat-out
answer to my question, I think he did it only because it was
questionable, and I think I wanted to know how long do I
have to live, but he can't give me that answer.
Dr. Wendy Harpham:
Will you do anything different with your future doctors, in
terms of your relationship?
Julia:
I would just ask him to be more specific with me and more-- to tell me everything,
because I am the person--I wanted to know about everything, you know, specifically
with this disease.
Dr. Wendy Harpham:
So, you like the truth, even if it's bad news.
Julia:
Oh, yeah!
Dr. Wendy Harpham:
You find that that helps you.
Julia:
Oh, yeah! Yeah.
Dr. Wendy Harpham:
How has your cancer affected your relationship with your
husband? What's the status of your relationship now?
Julia:
Well, we are together. We are looking to buy a house, and I
think what happened is that it really affected him also, you
know, the whole thing about the cancer, and he always
wanted--we always wanted children. He always wanted like six
of them. So he was really looking forward to have babies,
and it's just, you know. I guess it was just the shock for
him.
Dr. Wendy Harpham:
Have you been able to talk about the infertility?
Julia:
Yes. My sister, when she was here when I had the surgery,
she offered us that--we will see what's going to happen with
me. My understanding is that there is five years with this
ovarian cancer. If I'm going to be in remission for five
years that there might be a chance that it would be so-
called "cured"--the cancer.
Dr. Wendy Harpham:
So you're waiting for that before you talk about having
children?
Julia:
No. I was just waiting for your response since you're a
doctor.
Dr. Wendy Harpham:
Five years is considered an important marker for ovarian
cancer survivors.
Julia:
OK. So my sister, she was offering to have my husband's
baby, but to have I guess in fertilization is what they call
them?
Dr. Wendy Harpham:
Right. Artificial.
Julia:
Artificial. Yeah. And she said that she will carry the baby,
but the other thing is that she is in Hungary. So we would
have to go over there and, you know, go through all the
stuff, and I don't know how my husband feels about it. At
first he thought it was a great idea. I don't know if he
changed his mind or he feels that if I'm not going to be
here after, let's say, you know, for like five years or
whatever, then he doesn't want to stay with a baby that my
sister was giving him.
Dr. Wendy Harpham:
Yeah, You have two major difficult topics. One is your
survival--you have a serious type of cancer, and your future
feels uncertain; and the second major issue is the fact that
you can't bear children yourself, and both of these things
were unexpected and are very hard on a marriage. How have
you been able to talk about it with him?
Julia:
About talking about the babies?
Dr. Wendy Harpham:
Talking about your future together, your changed life
together, since you will not be bearing children. I mean,
have you gone to a support group or a counselor?
Julia:
No.
Dr. Wendy Harpham:
Have you read about it? What have you done to try to work
your way through these unexpected challenges?
Julia:
Yeah, I've read a lot of them on the Internet about this
cancer, and I have read books about it, but to tell you the
truth, it got me more depressed to read about it than to--
because like I told you, I wanted to know about everything,
but I find that later on, maybe it's not really the best for
me to know everything. Do you follow me?
Dr. Wendy Harpham:
Yes. And how do you feel you're dealing with the
uncertainty? Because you have read the facts, you know
things are uncertain. Julia, how do you deal with the
uncertainty?
Julia:
[laughs] I just go with the flow now. Basically there is
nothing I can do. It's basically out of my hands. I don't
know. I just say we are planning to buy a house, and I'm
just planning for the future, and actually I just told my
husband yesterday that maybe it would be a good idea to have
my sister have a baby and then just go from there. But the
thing is, he never went to a doctor to see if he can have a
baby or not.
Dr. Wendy Harpham:
To see about his fertility?
Julia:
Right. So, when we moved over here to the other side of
Florida, I asked him if he would do that, if he would go to
see a doctor, and he didn't want that.
Dr. Wendy Harpham:
So, it's still a very hard topic to talk about?
Julia:
It wasn't, but then just this weekend recently he told to
look after it. To talk with the insurance company and find
out what is the proper way to do it, because he wants to go
and find out, I guess.
Dr. Wendy Harpham:
Which is very much a positive sign of looking toward the
future.
Julia:
Yeah.
Dr. Wendy Harpham:
And certainly investing in a house is investing in the
future. Are there any other things you do to help build your
sense of hope?
Julia:
Well, we are trying to do a business together, but yeah,
we're going to stay together, because financially we can't
afford to go separate ways, and also the insurance is from
his company, so you know, basically he is paying for the
insurance, but you know, we are paying it together, but it
is his policy. You see what I'm saying?
Dr. Wendy Harpham:
Have there been any good things that have come out of your
illness, in terms of your marriage?
Julia:
No.
Dr. Wendy Harpham:
It's just been a challenge and hard.
Julia:
Yeah.
Dr. Wendy Harpham:
Do you feel your cancer has affected your relationship with
other family members or close friends?
Julia:
No, not really. Maybe my mom. My mom and sister, they're
more--I guess they're more worried about me. But the friends
are friends, you know?
Dr. Wendy Harpham:
Do they support you in any way, Julia?
Julia:
Yeah, but they don't really--I'm not really talking about it
with them. You know, the things that are hurting me, there's
only one friend that I talk with.
Dr. Wendy Harpham:
Who do you share your deepest-most fears, concerns, worries,
thoughts?
Julia:
My friend.
Dr. Wendy Harpham:
Your close friend?
Julia:
Yeah, I have one girlfriend that I talk to her.
Dr. Wendy Harpham:
Have you gotten any support from any other ovarian cancer
survivors?
Julia:
No, not really, but like I said, I have been on the
Internet, and I have been looking around, and I have read a
lot of things, so to tell you the truth, I wasn't really
looking for it, either. So, it's not that they didn't offer
me or anything, but I didn't look for it.
Dr. Wendy Harpham:
How did you dealt with difficult challenges before your
cancer?
Julia:
How did I deal with them?
Dr. Wendy Harpham:
Yeah. When you came across a speed bump, how did you deal
with it before your cancer?
Julia:
Good.
Dr. Wendy Harpham:
Did you tend to handle things yourself--
Julia:
Oh, yeah.
Dr. Wendy Harpham:
--or lean on other people?
Julia:
No, no. I handle it.
Dr. Wendy Harpham:
So, you're used to handling things yourself.
Julia:
Yeah.
Dr. Wendy Harpham:
You know, it sounds like you're a very independent woman and
you kind of deal with things your way. Can you share with me
what you have found to be most helpful in helping to cope
with your cancer? Either the treatment or the infertility
issues?
Julia:
Friends! Friends and understanding and patience. Those are
the three issues.
Dr. Wendy Harpham:
Do you think your illness has changed you at all?
Julia:
I don't really have an outlook. I don't really see the future past like maybe
five years or a few years. I'm not really planning anything. I would like to
travel, but right now, it's out of my hands. It's not something that, OK, I'm
going to make a plan and I'm going to get on a plan and I'm going to go do things.
No.
Dr. Wendy Harpham:
Did you used to plan before your cancer?
Julia:
Yeah.
Dr. Wendy Harpham:
So, that's a big change for you, to not do as much planning?
Julia:
Oh, yeah.
Dr. Wendy Harpham:
Not be able to picture the future or have confidence in the
future?
Julia:
Yeah. My self-esteem was really down after when I got back
from Hungary.
Dr. Wendy Harpham:
While you were recuperating?
Julia:
Yeah.
Dr. Wendy Harpham:
Why do you think that was?
Julia:
I don't know. I guess I just felt sorry for myself, that's
all.
Dr. Wendy Harpham:
That you were sick, that you'd lost your fertility?
Julia:
For me and for my husband, too, because he always wanted
children, and now I can't. I can't. And we've been married
13 years. So--and it just never happened before, because of
financial situations, or because of working as a truck
driver for three years and we didn't want to have a baby on
the truck, and it was paying him good money, so we didn't
want to stop that.
Dr. Wendy Harpham:
Has the idea that you delayed childbearing and now it's too late been an issue?
Julia:
I wish I would have done it sooner. Definitely.
Dr. Wendy Harpham:
Do you think that's been an issue for your marriage, that
you delayed?
Julia:
No. No, because it was agreeable. We agreed on it.
Dr. Wendy Harpham:
And there was no way for you to know that this was going to
happen.
Julia:
Right, right.
Dr. Wendy Harpham:
Has your life changed in any other ways? Your hope?
Julia:
Yeah. That's definitely. I mean the self-esteem and myself.
I don't see myself as I was before. No, definitely not. And
it's not for the better, it's for the worse. And I guess
it's because of the self-esteem, you know, it went down
after the surgery and after the chemo and after all the
treatments, and I still have the lymphocysts, which I have a
problem with the insurance taking care of it, and that's why
I say I don't really see any hope. So, yeah, my hope is one
of them that has changed.
Dr. Wendy Harpham:
How much control do you feel you have over shaping what
happens in the future?
Julia:
I do have some control over it, but I don't know. I don't
think about it.
Dr. Wendy Harpham:
Do you feel there are things you can do to help your
recovery, to help you feel better, to lift your spirits?
Julia:
Yeah, but financially I don't think I can do that.
Dr. Wendy Harpham:
So, this is just basically a hard time?
Julia:
Yeah.
Dr. Wendy Harpham:
Well, I'm glad you have that friend that you can share with,
and I'm glad you're doing well from your cancer, that the
treatment has worked so far and you're doing well. Are
there any last thoughts you'd like to share before we close?
A thought for someone who might be listening, who is going
through a hard time with ovarian cancer?
Julia:
It's just to let them know that this is an issue that it's
not their fault. It's nobody's fault, and to keep that in
mind, always, and I guess to keep their hopes up.
Dr. Wendy Harpham:
Julia, thank you so much for an honest, heartfelt
interview.
Julia:
Oh, you're welcome. Thank you.
Sheryl's Story: Focusing on Living
Well
|
|
Dr. Wendy Harpham:
I'm now speaking with Sheryl, a 45 year-old survivor from
Washington State. Sheryl is married and has two children,
ages 15 and 23. Hi, Sheryl.
Sheryl:
 Hi,
Wendy.
Dr. Wendy Harpham:
In 1997, you experienced abdominal bloating and headaches.
You went to your family doctor and were told simply to take
antacids. Meanwhile you developed a blood clot in your leg,
which was treated with some blood-thinning medication. Then,
during an annual gynecological exam, your gynecologist felt
a mass in your abdomen and did an ultrasound, and then
scheduled you for an elective exploratory surgery about six
weeks after that. You felt you didn't want to wait that
long, so you sought a second opinion, and this second doctor
did some additional ultrasound evaluation. About that time
you developed some excessive vaginal bleeding. You ended up
being evaluated by an internist who sent you to a
gynecologic oncologist. It gets kind of complicated, doesn't
it?
Sheryl:
Yeah! [laughs]
Dr. Wendy Harpham:
And this gynecologic oncologist, which is a gynecologist who
specializes in cancer of the female organs, did a surgery
where you were diagnosed with a stage III ovarian cancer.
Your cancer was treated with chemotherapy and radiation
therapy, which you completed in January of 1998, and you did
well until the end of 2000 when you developed recurrence of
the ovarian cancer, and the cancer was located in the
pleura, which is the lining of the lung, and you were
treated with chemotherapy, which you are just about to
complete. Is that right?
Sheryl:
[laughs] Well, I didn't have radiation the first go-round. I
just had chemo the first go-round. And then when the cancer
recurred, it recurred in my pleural cavity, in a lymph node
in the lining of my lungs.
Dr. Wendy Harpham:
OK.
Sheryl:
I did have exploratory surgery before we found that out in
my abdomen, thinking that the cancer was back in my abdomen,
and they closed me up and said I didn't have cancer. So I
went home and my CA-125 continued to rise, and so then I had
a PET scan, which discovered that my cancer was actually in
my pleural cavity, not in my abdomen, which is why they
didn't find it, and then I started radiation.
Dr. Wendy Harpham:
And so the radiation was to your chest wall? Or where was
the radiation?
Sheryl:
The radiation was to a specific lymph node mass, just above
my diaphragm.
Dr. Wendy Harpham:
Well, thank you for joining me, Sheryl. To start out, can
you tell me how you feel that being a woman affected how
your doctors and nurses interacted with you? Specifically,
Sheryl, do you feel that it affected how seriously you were
taken or how much you were respected by the health care
professionals involved in your evaluation and treatment?
Sheryl:
Well, since I don't have any comparison with being a man and
going to a doctor--I do know that I was told, "Of course
you're tired. You have kids. No, you have irritable bowel
syndrome." A lot of the symptoms that I was having were
brushed off as being something else. At that time, I had
grown up thinking that what your doctor told you, you
believed, and you went home and you trusted your doctor. I
didn't know that it was OK to question your doctor, and that
came from growing up as a female and that authority figure,
when they told you something, that's what you did. So I
think that on that level, it did affect my treatment.
Dr. Wendy Harpham:
If you had to go through diagnosis and evaluation again,
what would you do differently now?
Sheryl:
Oh, boy! I would do so much differently! First of all, I
knew nothing about ovarian cancer. I do know the signs and
symptoms now, and part of the reason why it took so long for
me to be diagnosed is because my original CA-125, which is
the cancer antigen blood test for ovarian cancer, was
considered in the normal range. I know now that in 25
percent of women, that normal range is not effective, that
you can have cancer and have this CA-125 be in the normal
range. I would have insisted that, even though my CA-125 was
in the normal range, that I be followed up with more
thorough testing.
Dr. Wendy Harpham:
From the beginning?
Sheryl:
From the very beginning--if I had known the signs and
symptoms.
Dr. Wendy Harpham:
What else would you have done differently, in terms of
preparing for your visit or talking with your doctors and
nurses?
Sheryl:
I would have brought some materials along with me, saying,
"Here are my symptoms, and here's what I think it might be,"
and I wouldn't have let the doctor say, "No, it's not
ovarian cancer. Your CA-125 is in the normal range." I was
told that by three different doctors. So it did take six
months to get a diagnosis. I would have said, "I don't care
what my CA-125 is," which eventually the very last doctor
that I saw did say that.
Dr. Wendy Harpham:
And he was the specialist in female cancers, the gynecologic
oncologist?
Sheryl:
The very last person who did my surgery, he did say
that.
Dr. Wendy Harpham:
OK.
Sheryl:
But it was the internist who I saw, who--she didn't care
what my CA-125 was. She knew that I needed surgery, and she
did actually fire one of my doctors at my bedside, because
he was saying that there was no hurry, and she was saying
that there was.
Dr. Wendy Harpham:
Even after your diagnosis, when you knew that you had
ovarian cancer, you were making treatment decisions, you
were starting treatment. What would you do differently now
compared to what you did?
Sheryl:
I don't know that I would do anything differently. I awoke;
I remember my doctor and my husband and my mom and dad and
my kids were standing in the hospital room, and he said,
"Yes, Sheryl, it was cancer." And I said, "And?" Knowing
nothing about ovarian cancer, I just thought he was going to
fix it. And so I started my treatments of Taxol and Carbo,
my six treatments. And I thought that it was going to be it,
and the longer I stayed in remission, the longer I thought I
was going to be one of those lucky ones, that 12 percent
that was going to go on and be cancer-free. So, I don't
think I would have done anything differently.
Dr. Wendy Harpham:
How was it to find out that your cancer had come back?
Sheryl:
It was devastating, because in ovarian cancer, if you can
get through, beyond your five years with your initial
remission, then you can say, "Oh, boy. This is it. I can do
it." And you hold onto that hope. You hold on for as long as
you can. I don't know, I ate--whatever it was that I ate
made me healthy, or was it this lifestyle or was it changing
this or that? I don't know what it was that kept me in
remission, and then it hits you, and they tell you that it's
come back, and then you no longer have that hope that boy,
you're going to be one of these ones that beats it. I can
possibly be in remission time and time again, but you're
never going to be one of these ones that really gets to beat
it, from the beginning.
Dr. Wendy Harpham:
How did you find hope again?
Sheryl:
I became an advocate for other women, and in doing that, I
find women that have that hope, and they keep me going,
because there's a lot of times I forget that I, myself, had
cancer. Being five and a half years out now, it is possible
to think that, well, maybe I'm not going to be one of these
ones that gets to go into remission for the rest of my life,
but maybe I will be able to treat it and treat it
successfully time and time again, and live a long life. I
figure, until they pronounce me dead, I'm not. So I just
keep going.
Dr. Wendy Harpham:
So, you really kind of changed your goals from wanting to be
cured to wanting to live your life?
Sheryl:
Right, exactly. And I think it is possible to live with
chemo and live, maybe not the life that you had originally
intended, but you can still live a wonderful life, even
though you're in treatment.
Dr. Wendy Harpham:
So, did you have that insight and click, that's where you
were and you were OK with that, or did it take work?
Sheryl:
I don't think that it took work. I kind of took the denial
road. I decided that it really didn't matter what the odds
were. I learned this, that even in playing the lottery, it
doesn't matter what the odds are. Somebody's going to win.
So, I do keep that in the back of my mind. I mean, what are
my alternatives? I don't really want to spend my life being
worried about recurrence. I mean, it's all in my head. It's
like if you hit turbulence in an airplane, in your mind you
can imagine the airplane swirling down and crashing into the
ocean. Or you can say, "This is kind of bumpy for a while,
but it's going to straighten out in a little bit." It's all
in your mind. I've come to realize that it's just easier to
imagine yourself living.
Dr. Wendy Harpham:
So, you feel like you have a lot of control over your
perception over your uncertainty and how it affects your
present?
Sheryl:
Exactly. If you don't know the ending--if you're going to
pretend an ending, you might as well pretend a good one,
because I don't know what the future holds. I know what the
statistics are, but as long as they're only statistics, how
do I know that it is reflective of my particular life? I
don't know, and if I had started worrying about five years
ago that I was going to be dead at this point, look at all
the life I would have wasted.
Dr. Wendy Harpham:
Now, did this come naturally to you, Sheryl, or is this kind
of the way you were before you got cancer? You know, you'd
accept that things could turn out bad, but you just planned
on things being OK?
Sheryl:
No, I think that cancer really turned me around. I was quite
the worrier before I got cancer, and now I just feel I don't
have time to worry. I have other things to do.
Dr. Wendy Harpham:
Again, you sound like you feel you can choose, and it's
tremendously empowering in terms of your quality of life.
Sheryl:
I do! I mean, I wake up every morning and I choose to think,
"Oh, my gosh. Is this going to be the beginning of the end
or the beginning of the beginning?" And I choose to think
one way, and I don't think it's putting my head in the sand,
because it's not like somebody has told me I'm going to die
from this disease and I'm denying it. I'm simply choosing to
live in the moment, and today I'm not dead, so I'm not going
to live like I am.
Dr. Wendy Harpham:
You are fully alive.
Sheryl:
Absolutely.
Dr. Wendy Harpham:
Now, how do you think your cancer has affected your
relationship with your husband?
Sheryl:
Well, that's interesting, because we are separated. [laughs]
It gave me strength, and I don't have time to be in a
relationship where it's difficult or it's pessimistic. I
need to live in a positive world, and again, I'm not living
in denial, but I need to live in a relationship where I am
supported for my beliefs. And it was a long time coming, and
I actually found strength to separate from a bad
relationship. I was kind of waiting for me to get over this
cancer first, before I did it, thinking about, well, how can
I live through cancer and be separated? And then I realized
I was actually living alone in my relationship. Even though
I had a partner, it wasn't much of a partnership. So, even
if I have six weeks or I have six years or 60 years, it was
worth it to me to separate myself from that relationship.
Dr. Wendy Harpham:
So, who did you depend on, since it sounds like it couldn't depend on your husband?
Sheryl:
Well, I call my daughter "Cinderella" because she took on
the role of Mommy.
Dr. Wendy Harpham:
Has your cancer created financial hardship for you?
Sheryl:
Yes, it has. Again, I work 50 percent in the office, and with my husband leaving,
there's been quite a bit to do as far as the bills go, and we're pretty much
in financial ruin, but I can't really worry about that. All I can do is all
I can do.
Dr. Wendy Harpham:
Where are you going to get practical information or resources about dealing
with the financial end of illness?
Sheryl:
I have talked to the consumer's liaison in Washington, D.C.
Dr. Wendy Harpham:
I know that you do a lot of work with advocacy. Can you
share with us what you're doing and why?
Sheryl:
I work at Fred Hutchinson Cancer Research Center in the
Pacific Ovarian Cancer Research Consortium Patient Advocacy
Group, and I coordinate the program. We have about 200 women
and men who are interested in advocacy in ovarian cancer,
and I work as a liaison between the community and the
researchers doing work in ovarian cancer, so that the
community is more aware and more knowledgeable about the
research being done in ovarian cancer. I think that the more
that you know about what's going on, the more ready you are
to participate in trials, and that's the only way that we're
going to get new drugs available to women is by
participating in clinical trials.
Dr. Wendy Harpham:
You know, as a survivor actively dealing with the public on
ovarian cancer issues, how do you decide what part of your
own experiences to keep private and what to share
publicly?
Sheryl:
That's kind of funny. I do have more than one story about my
personal life. In the advocacy group, we take public
speaking classes and we learn to tell our stories within
five minutes and without a personal agenda. I myself do have
a personal agenda in my private life about treatment options
or things that I was not told, but in my professional life,
I think there is a way to talk about your own personal story
without implicating anyone and just having the facts.
Dr. Wendy Harpham:
In telling your story, it sounds like it was hard to get a
diagnosis, and that's not uncommon with ovarian cancer. Can
you tell us a little bit about the signs and symptoms of
your ovarian cancer?
Sheryl:
Well, ovarian cancer is oftentimes called a silent killer,
because the symptoms are not recognizable as specifically
ovarian cancer. Sometimes it's irritable bowel syndrome.
Sometimes there is general abdominal pain, like gas or
indigestion and pressure. Maybe there is weight loss or
weight gain or a large tummy, nausea, diarrhea, constipation
and loss of appetite or feeling fullness or maybe abnormal
bleeding. So you can see that the symptoms are vague, but if
you put them all together, you can maybe bring these
symptoms to your doctor, and he might be able to recognize
them as ovarian cancer.
Dr. Wendy Harpham:
Sheryl, really, thank you so much for doing this. This was just great.
Tracy's Story: Facing Fear Head-
On
|
|
Dr. Wendy Harpham:
Right now, I'm speaking with Tracy, a 31 year-old survivor from North Carolina.
Tracy is married and has a five year-old son. Hi, Tracy.
Tracy:
 Hi.
Dr. Wendy Harpham:
So, after you were diagnosed with cervical cancer in 1999,
you were treated with a hysterectomy, and the physicians left
your ovaries intact in order to avoid the problems of early
menopause. I understand you did fine until about a year
later, you felt a lump in your abdomen.
Tracy:
That's right.
Dr. Wendy Harpham:
You had it examined, and it was found to be an ovarian cyst.
This cyst was biopsied and determined to be ovarian cancer,
but you didn't receive chemo at that time. And then about a
year later, which takes us to 2000? Is that right?
Tracy:
That's correct.
Dr. Wendy Harpham:
You had a recurrence of the ovarian cancer, and for that you
received chemotherapy, and you got a short remission. And
then in September of 2002, the ovarian cancer came back again
in the abdomen, and you've been getting chemotherapy.
Tracy:
Right.
Dr. Wendy Harpham:
How are you feeling right now?
Tracy:
I'm doing pretty well. This time, the chemo hasn't been as
hard, it seems, on me as it was the last time. I haven't had
quite as many side effects this time around, so it's actually
been pretty good.
Dr. Wendy Harpham:
Well, thanks for joining me today, Tracy.
Tracy:
Thank you.
Dr. Wendy Harpham:
How do you feel that being a woman affected how your doctors
and nurses interacted with you? Specifically, Tracy, do you
feel it affected how seriously you were taken or the respect
you were shown by the health care professionals involved in
your evaluation and treatment?
Tracy:
I don't think that my being a woman made any difference at
all. I was always taken very seriously and treated with the
utmost respect, and my concerns were addressed and my doctor
has always been there for me, and I've never had any problems
at all being taken seriously.
Dr. Wendy Harpham:
If you had to go through diagnosis and evaluation again, what
would you differently?
Tracy:
I don't know if I would do anything differently. I don't
think there's a map or a way to plan out how you react to
being told you have cancer and how you go through your
treatments. I think you just have to go with what you've got,
and that's the best you can do.
Dr. Wendy Harpham:
What was it like for you? You were only 31 years old when you
had cervical cancer--well, you're 31 now.
Tracy:
Right.
Dr. Wendy Harpham:
So, you were how old when you were first diagnosed?
Tracy:
29.
Dr. Wendy Harpham:
You were only 29 and you were diagnosed with cervical cancer.
Tracy:
Right.
Dr. Wendy Harpham:
You get through that; a year later you find out you have
ovarian cancer. You get through that; it comes back. How did
you, Tracy, deal with that?
Tracy:
Well, honestly, for a while I didn't deal with it at all. I
just kind of kept it in the back of my mind and just went
through my treatments, and finally I realized that I was
bottling up way too much emotion and started going to a
support group for cancer survivors, and that has made a
tremendous difference.
Dr. Wendy Harpham:
How did you find out about the support group?
Tracy:
It was run out of the hospital that I was getting treated
from.
Dr. Wendy Harpham:
How did it help you?
Tracy:
It was just such a relief to be able to talk to a group of
people, you know, all different ages, all different
backgrounds, but all with the common experience of going
through chemo and having to deal with cancer. It was just a
relief to know that there were other people that felt like I
did and were going through the same things that I'd been
going through, and it was just a big help.
Dr. Wendy Harpham:
And you said you didn't deal with it at first, you know,
until you started going to the support group. Did you just
not have feelings? Did you not feel fear or anxiety?
Tracy:
I think I was really afraid most of the time, and I just
kept--I think I thought that if I sat down and thought about
the reality of this could be what ends my life, you know,
basically I was getting all the five-year survivor rate and
all that kind of thing, and I was just basically afraid to
sit down and think about that, especially with having a young
son and trying to think about his future without me, and I
think I just couldn't sit down and dwell on that, at
first.
Dr. Wendy Harpham:
How do you think holding it inside or blocking it off hurt
you?
Tracy:
It made me distant from--I didn't have as good a relationship
with my husband, and I was withdrawn from my son a little
bit, I think, and I was very withdrawn and didn't talk a lot,
and it was very hard on our whole family.
Dr. Wendy Harpham:
So, it was kind of isolating.
Tracy:
Very much so.
Dr. Wendy Harpham:
How do you think keeping it inside of you affected you
physically?
Tracy:
Physically, you know, I started getting stomach aches and
just feeling very stressed out all the time, and I think
that's what finally--the physical feelings actually, I think
probably led to me into going to the support group, because
you get the upset stomachs and the nervous feelings and the
stressed-out feelings, and finally I just decided I needed to
do something about it.
Dr. Wendy Harpham:
Tell me how your fear changed after going to support
group.
Tracy:
Well, it was very comforting to me, people that had been
through ovarian cancer and had gone past the five-year mark,
and it was also comforting to see people that were going
through it at the same time I was and, you know, that my
reactions to my chemo weren't any different than anybody
else's.
Dr. Wendy Harpham:
So it helped you have hope to put a face and a name to the
idea that people can survive?
Tracy:
Right.
Dr. Wendy Harpham:
That people can do well.
Tracy:
Right.
Dr. Wendy Harpham:
Now, were any of the patients in your support group not doing
well physically or emotionally?
Tracy:
We had different people with different kinds of cancer, and
some people were having to go through bone marrow transplants
and that kind of thing, and physically I think they were
going through a harder time than some of the other people
that were going through chemo. That was difficult to see, but
also kind of inspiring to know that they still kept going and
wanted to get their head together as they were getting their
physical problems taken care of, too.
Dr. Wendy Harpham:
Now, do you just go to the support group, or does your
husband go with you?
Tracy:
I just go by myself.
Dr. Wendy Harpham:
Do you ever bring a friend with you?
Tracy:
No. I've always been more comfortable going by myself.
Dr. Wendy Harpham:
How do you think going to the support group is affecting your
relationship with your husband?
Tracy:
I think it helps, considering that I can at the support group
talk about my concerns about my future, and it takes that
pressure off of me, so I don't feel like I have to talk to
him about the serious--I mean, we still talk about the
serious problems and the realities of what my diagnosis is
going to cause, but it takes some of the pressure off of him
having to be my sole support.
Dr. Wendy Harpham:
Can you tell us a little bit about how cancer has affected
your relationship with your husband?
Tracy:
It's had a great deal of affect on my husband. It's brought
us a lot closer, and at times, it's kept us apart a little
bit. There's a lot of physical problems when you--that you
experience when you're going through chemo, and that can
cause problems in your relationship.
Dr. Wendy Harpham:
In terms of being physically affectionate, that sort of
thing?
Tracy:
Yes, that sort of thing.
Dr. Wendy Harpham:
How did you deal with that?
Tracy:
Well, frankly, we just had to work around it. You know, if
something was uncomfortable we'd just do something else.
[laughs]
Dr. Wendy Harpham:
Were you able to talk about it with him?
Tracy:
Yeah. That's one good thing that we have been able to talk
about. We've never had a problem discussing what was going on
and how I was feeling, and he's very understanding, and he's
been very supportive.
Dr. Wendy Harpham:
So you two have had to be flexible and find new ways of
relating?
Tracy:
Yes.
Dr. Wendy Harpham:
You know, everybody always thinks about how is this affecting
you, the patient--you, you, you.
Tracy:
Right.
Dr. Wendy Harpham:
Do you talk about how all of this is affecting him?
Tracy:
We do, and it has almost as much an effect on him as it has
on me. You know, he doesn't have cancer, but his whole life
right now is revolved around someone who does have cancer.
So, he has to take care of me and play more of a mother and
father role to our son when I'm sick, so it's affected him
very much. And he's fortunately been a very supportive
husband, and he's not afraid to talk to me about things,
which I think is a tremendous help.
Dr. Wendy Harpham:
In what ways has facing your illness brought you closer?
Tracy:
I think we realize that we have to enjoy our time together
now, instead of saying, "Oh, in 20 years we'll go on a big
vacation." You know, we try to make each day a little bit
more special and make sure that we tell each other that we
love one another, and try our best to enjoy now, instead of
putting it off until later.
Dr. Wendy Harpham:
So, you seize the day?
Tracy:
Exactly.
Dr. Wendy Harpham:
In what ways has your illness created tension?
Tracy:
Well, you know, it did cause problems with our intimacy, and
that can become very frustrating, especially for the partner
who is not physically ill. You know, he has to understand
that I sometimes don't feel like that part of our
relationship is a priority, whereas to him, his life is still
the same and he still would like to.
Dr. Wendy Harpham:
So your needs are not in synchrony anymore?
Tracy:
Right.
Dr. Wendy Harpham:
You need different things than he needs.
Tracy:
Exactly.
Dr. Wendy Harpham:
And you may not be able to satisfy all his needs at the time
he'd like them satisfied.
Tracy:
Exactly.
Dr. Wendy Harpham:
What other tensions do you think your illness has caused?
Tracy:
Well, there's the financial burden of going through chemo and
having doctors' appointments every month.
Dr. Wendy Harpham:
Wasn't part of the bargain, huh?
Tracy:
[laughing] No! No, and thank goodness, he's been very
supportive about that.
Dr. Wendy Harpham:
When you say he's been supportive, how did you work through
the tension?
Tracy:
Well, if he got tense or upset, I would listen to him, and
same thing with me, if I'm frustrated or upset, we'd sit down
and talk about it.
Dr. Wendy Harpham:
Was it always pretty clear what was causing the tension?
Tracy:
Yes. I think it's always been pretty obvious.
Dr. Wendy Harpham:
What do you think has been the hardest to talk about with
your husband?
Tracy:
What the future may hold; if I'm still going to be around in
five or ten years, or that kind of thing. You know, him
having to deal with the fact that he's probably going to be
the only parent our son will have in his teenage years.
Dr. Wendy Harpham:
What kind of answers did you arrive at, that you could live
with?
Tracy:
I've just decided that it's not to my advantage to sit and
think I may only have five years left. I'm just going to
enjoy what I have, and hopefully in five years I'll still be
going strong, and I'm just not going to worry about it as
much as I used to.
Dr. Wendy Harpham:
What effect do you think these serious talks have had on your
sense of hope?
Tracy:
I think facing reality helps you--once you face it, and you
can kind of let it go and relax and not take it so seriously
all the time. It's hard to worry 24 hours a day, seven days a
week about something. Finally, you've just got to let it go
and relax.
Dr. Wendy Harpham:
I think that's very instructive. It's almost counter-
intuitive. A lot of people will not talk about the things
they fear the most.
Tracy:
Right.
Dr. Wendy Harpham:
Thinking it will make them less hopeful, or thinking it will
make it happen.
Tracy:
Right.
Dr. Wendy Harpham:
You're telling me that your experience was that facing your fear and talking
about the thing you feared the most, namely you dying--
Tracy:
Right. It did.
Dr. Wendy Harpham:
--and your husband having to raise your son, freed you to
some degree from that fear?
Tracy:
Very much so.
Dr. Wendy Harpham:
Allowed it to drift into the background, so that you could
focus on what you have.
Tracy:
Right.
Dr. Wendy Harpham:
In what ways do you feel your husband has most supported you
or been most helpful?
Tracy:
That's a long list, because he's handled this a lot better
than I would have ever, even thought he could. He has really
stepped up to the plate and taken care of our son when I was
too sick to get up and fix his lunch for school or take him
out to play with him, and my husband just--you know? We try
not to tell our son that it's because Mommy's sick that she
can't do these things, but he really spends a lot of time
with our son. If I need anything, he immediately goes out and
gets what I need. He's just kept the financial situation out
of my sight [laughs] and not even spoken to me about the
financial aspects of it, which has been a big help.
Dr. Wendy Harpham:
So, he's very sensitive, he's responsive, he's
responsible.
Tracy:
He is.
Dr. Wendy Harpham:
Are there any things you do to try to help him help you? Or
just to help him through his side of it?
Tracy:
When I'm feeling good, I try to do more stuff around the
house if I can. I try to let him, when he's at home, try to
get some work done in the evenings, because he's got to take
several days out of work a month just to take me for chemo.
So, it's kind of a balance. He helps me when I'm not feeling
well, and when I am feeling well I try to help him out.
Dr. Wendy Harpham:
How often do you thank him or acknowledge what he does?
Tracy:
I'm sure I don't do it enough, but I try at least once a day
or a few times a week to tell him how much I appreciate what
he's done.
Dr. Wendy Harpham:
What do you think he wants the most for you, Tracy? Or from
you?
Tracy:
I know that he wants me to eventually go into remission and
stay in remission, obviously. But I think he wants, most of
all, for me to be happy and to enjoy my life and feel like my
life is--I've lived a good life.
Dr. Wendy Harpham:
That's a wonderful thing.
Tracy:
I think so.
Dr. Wendy Harpham:
You've mentioned your son.
Tracy:
Yes.
Dr. Wendy Harpham:
Tell us about how your cancer has affected your relationship
with your son.
Tracy:
It has, I think, made me appreciate the fact that I have him
and he is my legacy. One of the best things I've ever done in
my life was to have him, and I'm so grateful every day that I
do have him.
Dr. Wendy Harpham:
Now, being sick, you know, after your treatments and all--
Tracy:
Right.
Dr. Wendy Harpham:
I'm guessing that you can't relate to him or care for him the
same way you would if you were feeling perky and
wonderful.
Tracy:
Right.
Dr. Wendy Harpham:
How has the illness affected how you relate to your son?
Tracy:
I think when I was first diagnosed and first went through the
first round of chemo it was very frightening for him, seeing
my hair fall out and that kind of thing. And when I was
diagnosed again, my hair had just started really growing back
in and he--we had to tell him, because [laughs] my hair was
going to start falling out again, and he's like, "Oh, that's
great. We get to get new wigs." He thinks it's fun. So, we
try to keep him involved, but not let him know how really
serious it is. We've spent a lot of quality time together
reading and try to make the most of each day that we can.
Dr. Wendy Harpham:
How do you think your illness has affected your relationship
with your other family members or your close friends?
Tracy:
It's really shown me how many friends I do have. You know,
friends that come over and cook dinner and friends that--
family members that throw me hat parties. It's really
surprised me how many people, when they say, "Can I do
something?" and you say "yes," they actually do it. And a lot
of people, that's just something they say and don't really
mean it, but I've had most of the people in my life actually
ask and meant it, and gone through and helped me out in some
way or another.
Dr. Wendy Harpham:
Tell me a little bit about that hat party. When was that?
Tracy:
Oh, gosh, that was when I was first diagnosed and first going
through chemo. I had mentioned it to my niece that I had
heard something about somebody has had a hat party when they
started going through chemo, because you lose your hair. You
need hats and scarves and things like that, and she threw a
surprise hat party for me, which was a real morale booster
and just so nice to see all my friends and family supporting
me like that.
Dr. Wendy Harpham:
So, it was really something good from something pretty
horrible?
Tracy:
Yes, very much so.
Dr. Wendy Harpham:
You mentioned about the financial hardships causing some of
the tension between you and your husband.
Tracy:
Right.
Dr. Wendy Harpham:
Tell us a little bit about how cancer created financial
hardship.
Tracy:
I had just started a job when I was first diagnosed, and my
insurance had not kicked in yet, and so we've pretty much had
to pay, and when your chemo is $12,000 per month and only one
member of the family is working, that is a tremendous
financial strain.
Dr. Wendy Harpham:
How did you find out about practical information and
resources that might be able to help you?
Tracy:
The hospital that I went to gave me a lot of literature on
places that, you know, we could get financial help and how to
go about getting it, and the American Cancer Society was very
helpful, and basically those things are what have gotten us
through.
Dr. Wendy Harpham:
So, they are making it better.
Tracy:
You have to go make the effort to find it.
Dr. Wendy Harpham:
Are there any last thoughts you'd like to share before we
close?
Tracy:
Just be honest. I think that's the biggest thing that I've
gotten out of this. Quit putting on a happy face, and just
deal with life as it is, and you'll get through it and things
will eventually work out the best way that they can.
Dr. Wendy Harpham:
Thank you so much, Tracy.
Tracy:
Thank you.
Dr. Wendy Harpham:
I want to thank Sandi, Julia, Sheryl and Tracy for sharing
your experiences and your thoughts with us. I hope these
personal interviews help you with some of the concerns that
may be part of your life. I encourage you to listen to other
recorded programs we have available on the Web site at www.cancer.org and on the
phone by calling 1-877-333-HOPE. That's 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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