Dr. Harpham: Hello, and welcome to the American Cancer Society's Cancer
Survivors Network. I'm Dr. Wendy Harpham, your host. Today I will be talking
with two women from across the country, both 34-55 years old, who have completed
their treatments for ovarian cancer. As a doctor of internal medicine, and also
a ten-year lymphoma survivor myself, I'm ready to have a great conversation
with these women. First let me briefly introduce our two guests. And then I'll
open up the discussion, as we talk about such issues as having confidence in
what the doctors are telling you; the benefits of being good to yourself; getting
help from those around you; dealing with cancer-related fatigue; working through
your anger; dealing with the financial consequences of treatment-related disabilities;
and survivor's guilt.
Our first guest is Connie, a 53-year-old woman from Kirksville, Missouri;
married and with no children. In 1998, Connie thought she had the flu
or appendicitis when she went to the hospital with abdominal pain. Emergency
surgery revealed ovarian cancer. The surgeons removed her ovaries, uterus
and appendix, but did not tell her the diagnosis until the final slides
were read a few days after surgery. In retrospect, she'd been unusually
tired, but had attributed it to the Christmas holiday bustle. Even thought
he surgeons removed all the cancer that they could see, she was treated
after surgery with chemotherapy for six months, to mop up any cancer
cells that might have been missed. Ever since, Connie's checkups have
been good, with no evidence of cancer. Hi, Connie. Welcome to the show.
Connie: Hi, Wendy, thank you.
Dr. Harpham: Our next guest is Rebecca, from Bowie, Texas. Rebecca
is 49, and in 1997, was diagnosed simultaneously with uterine and ovarian
cancers. She had some abdominal discomfort and leg pain and a few weeks
later discovered a lump in her groin. Like Connie, she'd had some unusual
fatigue, which, in retrospect, she realized was due to the growing cancer
that was diagnosed. She'd also noticed some stomach swelling, which
she'd attributed to getting older, and so had started doing some stomach
exercises.
Rebecca was evaluated at MD Anderson Hospital in Houston, and based
on their recommendation, was then treated with eight rounds of chemotherapy
in her home town of Bowie. She developed a rare and debilitating nerve
damage as a side effect of her chemotherapy. She then received an experimental
drug, to try and counteract the nerve damage. It did help, but did not
reverse the nerve damage completely, so she continues to have problems
that make it difficult to work. Through all of this, Rebecca has had
to deal with insurance companies and disability, and we will be able
to talk about that. Rebecca, welcome to the show.
Rebecca: Thank you, Wendy.
Dr. Harpham: Well, let's open today's discussion, by talking about
developing confidence in your doctors. Most people don't have an oncologist
before their diagnosis, so not only do newly diagnosed patients have
to deal with the shock of their illness, they find themselves dependent
on a new doctor, for helping them make the decisions and administer
the treatments that can save their lives. How do you develop such an
important relationship during such a stressful time? How do you develop
confidence in what these doctors are telling you? And this ability to
trust your new doctor can be complicated if your original cancer diagnosis
has been withheld from you for a few days, or if your cancer symptoms
were misdiagnosed for awhile before you finally got the cancer diagnosis.
Now, Connie, when you were evaluated at the emergency room with your
abdominal pain, the doctors told you, as I understand it, that you probably
had appendicitis or diverticulitis, which is a benign condition of the
colon. And you think now that they probably were suspicious of cancer,
but didn't tell you that before your surgery. Even after they did the
appropriate cancer operation, they didn't tell you your cancer diagnosis
until the final slides were out a few days later. Connie, how do you
feel about the way your doctors handled your diagnosis?
Connie: Looking back on it, I feel like they handled it the best
as they could. I was fortunate that my regular physician was involved
in the decision making on that, and my family. So that they were doing
what was best for me, getting over an emergency hysterectomy and giving
myself a few days to heal. At the time, I was a little angry about it.
Dr. Harpham: Do you understand why they did it that way?
Connie: Oh, I do now, yes. Actually if it hadn't been for my mom
and my husband explaining it to me a dozen times...
Dr. Harpham: Right. Well, tell me what you were angry about, and
how do you think it affected your ability to trust your doctors?
Connie: I kept saying, Why the hysterectomy? I thought I was going
in for an appendectomy.
Dr. Harpham: A benign, routine surgery.
Connie: Right. And I was saying Why the hysterectomy? And I would
just get kind of, Well, we'll talk about it, or you know. Of course
I was drugged, too, because of the painkillers so I was just kind of
in and out. But as far as trusting the doctor, I don't know if I did
at first. It took me awhile.
Dr. Harpham: How do you think you developed that trust?
Connie: Well, I had this strange thing of research. Once I was out of
the hospital, I hit the Internet, I did research on what they had told me so
I could compare what they said with what I was finding at other sources. And
that's how I managed to develop the 'yeah, they're telling me the truth and
they handled this right. And my mom and my husband were both there and we discussed
this over and over until I was able to be real comfortable with the fact that
they did put off telling me everything for my own good.
Dr. Harpham: How did your doctors feel about your looking everything
up? Kind of checking what they were saying. Were they encouraging about
that, or do you think they were put off?
Connie: I think they were encouraging about it. I would go in to
the doctor's office, I would have a list of questions written out so
I wouldn't forget to ask them. I found out about this and I found out
about that. And I would have a whole list of questions, and He'd say,
Well, what's next on your list? Let's get through all of it.
Dr. Harpham: So that really worked for you as a team, and that
builds the trust between the two of you?
Connie: Oh yes.
Dr. Harpham: And it probably worked for the doctor too, because
he could trust that your questions were answered, that you understood
what he was doing and why.
Connie: Right. Now I was real aware that they were listening very
closely to answer just the question that I asked and not give me other
things. I felt like sometimes like I really had to do some digging to
get the answers that I wanted, but after I got over the problem of the
panic attacks at first, then everything went real smooth as far as my
work with my doctors.
Dr. Harpham: What do you think those panic attacks were about?
Connie: Fear. I've always been very much in control, I've been
one of these people that I'm everybody's big sister and I've been a
manager on my job and the whole bit, and this whole thing just took
my life out of my control. And here I'm in control of the doctors, and
that's what caused panic attacks, I think.
Dr. Harpham: So again, research and knowledge and communication
helped tame your panic.
Connie: Oh, yes, oh yeah.
Dr. Harpham: Rebecca, talk to us a little bit about the trust between you
and your doctors.
Rebecca: Well, initially I was just thinking about Connie's experience
where she was not told. I WAS told when I came out of surgery that I
had that it was cancer. The doctor tried to tell me before the surgery
but I was pretty much in denial, and the first oncologist who came to
see me, I really felt I was ambushed. I wasn't supposed to see an oncologist
until my own doctor got back from a conference, and I felt like I'd
been ambushed by the Angel of Death, and so I really did not have any
trust.
Dr. Harpham: Tell us a little bit about that experience and how it affected
you.
Rebecca: I'm still traumatized by it.
Dr. Harpham: Can you tell us what was the situation--you had your surgery
and..
Rebecca: I'd had my surgery...
Dr. Harpham: Did you know it was cancer yet?
Rebecca: I knew it was cancer and my doctor said, Look, I'll get
the pathology report next week and when I get back, I want you to see
this other doctor, this man doctor and he said, we'll talk about it
when I get back.
Dr. Harpham: Okay, so this is the doctor with whom you've had a
longstanding relationship, so you trusted him.
Rebecca: Right. He was my gynecologist and he did an excellent job with
the surgery.
Dr. Harpham: And then this woman walks in..
Rebecca: And so I hadn't eaten, it was on a Friday night about
five o'clock and I hadn't eaten since Tuesday and I was there with a
pain pump. And I was just sort of laying there and this woman with a
white coat came to the door and she had papers in her hand, and she
said, "do you have questions about your pathology report.?"
And we didn't know who she was. We thought she was someone from the
hospital and what I found out later was that the attending physician
who was covering for my doctor had asked her in without my permission.
So when she came in, I just felt totally blown away by what she told
me, and my only question..
Dr. Harpham: What did she tell you?
Rebecca: Well, she said it was at least a Stage III, which means
advanced, and she said I still have some questions for the pathologist,
so I'm thinking, then why are you here? Why are you telling me all this
bad stuff? You know, that the survival rate was not good, and by the
time she was through explaining things to me, my only question was,
How will I die?
Dr. Harpham: What happened after that, Rebecca.
Rebecca: I saw my doctor on the following Tuesday...
Dr. Harpham: But what happened in the days between this doctor?
Rebecca: I never saw her again. She came for fifteen minutes or
half an hour and then she left and I never saw her again, and whatever
questions she had for the pathologist, she did not come back and share
with me.
Dr. Harpham: But how did you get through until the Tuesday when your doctor
got back?
Rebecca: I cried. And I had friends who went to one of the oncology
offices in the hospital and got some pamphlets and I was basically just
trying to get over this surgery. It actually greatly increased my pain,
following my surgery, I still needed pain pump, and I did have friends
who came and stayed with me constantly and fortunately that evening
I did have a couple friends with me. Had I been alone, I don't know
how I would have handled it. And I was very angry, and it happened to
be her partner that I was going to see the following week, and it did
affect my relationship with him.
Dr. Harpham: Tell us about that.
Rebecca: I was put off by his manner, because he clearly had not,
he was treating me as just an advanced ovarian patient. He did not look
at my chart before I came, and started flipping through it as I sat
to see him, and he did answer all my questions, but didn't look me in
the eye. And I felt it clear from his demeanor that he did not have
a real good feeling about my surviving this, and when I asked questions,
I said, what about hormone therapy. He said it has no place in this
treatment. I said What about this. He said it had no place in this treatment
and he didn't explain why. And the only thing he said was, You're gonna
be bald all over. And I would have preferred someone to say give a positive
attitude, that we're gonna treat this and you can get on with your life.
Dr. Harpham: Who ended up treating you, Rebecca?
Rebecca: I did go to him to have the chemotherapy administered
because it was closer, about sixty miles to Denton where I had my treatment.
But before I would go through with his protocol, I went to MD Anderson,
and I had done research and selected the doctor I wanted. And so I saw
him and the team down there and we discussed my personal needs, which
I put quality of life ahead of any other decision. I wanted to keep
working, that was may main consideration. And so we chose a chemotherapy
regimen that was popular in the past but because it had fewer side effects
is the reason I wanted to do that one. So the doctor in Denton went
along with MD Anderson but he was clearly begrudging about it, he was
a little offended that I had waited so long to go back to him, because
it was about six weeks.
Dr. Harpham: How much hope did the doctors at MD Anderson give you?
Rebecca: They made it, I asked was our choice, what was our purpose
in chemotherapy? Was it a cure? And they said, no, it was to prolong
the interval between remissions. So there was it was clear that a recurrence
was pretty certain. And when I asked, where will it come back, they
said, Everywhere.
Dr. Harpham: This is the people in Anderson?
Rebecca: Right.
Dr. Harpham: Okay, so you went from your local doctors, making
it sound grim, to Anderson doctors, communicating well and indicating
an investment in maintaining your quality of life, but also a sense
that there's not much hope for your surviving this.
Rebecca: Right. They asked if I was willing to trade quantity for
quality. And I said, absolutely.
Dr. Harpham: Okay. Tell us what happened to your hope after that?
Your different hopes. Your hope for a cure, your hope for long life,
your hope for getting good quality of life?
Rebecca: I was very encouraged by the visit to the Wellness Community
out in California. My sister took me out there between surgery and chemo
and going to MD Anderson, I had a little bit of time so I went out there.
And they assured me that there are survivors of every type and stage
of cancer. Now we don't know who, even if it's one in a hundred, we
don't know who that one is, until the other 99 drop. And I felt encouraged
by that,
Dr. Harpham: So you felt you could be the one in a hundred?
Rebecca: Right. And in fact later when my Denton doctor was so
negative, you know, I'd say, oh, look, my tumor mark is down, he'd say,
It doesn't mean anything. Anything that I said that was positive he
would try, I don't know what his purpose was, but finally I said, You
know, my friends think that I'm unique and special and that if anyone
can survive this, I can. Even if it's one in a hundred, and don't know
who that one is until the other 99 drop, can you treat me as if I'm
that one.
Dr. Harpham: How did your doctor respond?
Rebecca: That day, he was quite excellent. He asked for examples
where he had been negative, and I told him, and he came in and held
my hand during chemotherapy, which was totally unusual, and then other
patients said, Oh, I had the best visit with him today. And I knew why.
But then the very next visit I had some shots to boost my white count
and I was feeling better. And I said, Oh, I'm feeling better, you know,
because I had these Nupagen shots, and he said, Oh, it's all in your
head. So then I knew, and then finally, I tried to change doctors during
chemotherapy, but they don't like you to do that, so after I finished
chemotherapy, my best friend said, If you go to him any more, I refuse
to take you. And then I did change to another physician.
Dr. Harpham: And how has it gone with the new physician?
Rebecca: Um. The main gynecological oncologist, there were some
problems one day, the day I went into the office, and things did not
work out with him, but I really liked his partner. She's very compassionate,
she dared to use the word "cure", and she has been very supportive
and I'm really grateful.
Dr. Harpham: And how long has it been since treatment?
Rebecca: I finished chemotherapy about three years ago.
Dr. Harpham: Three years ago. That sounds pretty good.
Rebecca: And I have been in remission since then.
Dr. Harpham: Well, let's talk about this a little bit more, both
Rebecca and Connie. You tell how when you got this horrible news, that
your prognosis was grim, your pain got worse. And why don't you talk
about the relationship of how hopeful you feel with how you feel physically.
Connie? Can you talk a little bit about how your sense of hope was
affected by how you felt during the course of your treatment?
Connie: Well, for me, it took me awhile to get over the initial
part, but after that, my sense of hope went right back up. We called
it my Missouri mule, just a plain stubbornness that this was not going
to defeat me, and I had the good fortune of having very supportive doctors
and nurses and family and you know...
Dr. Harpham: So the people around you reflected that same hopefulness?
Connie: Yes. Whatever it was. Now I also did go into counseling
for awhile. I had an excellent counselor, because I couldn't even say
the word "cancer" for about three months, you now. As far
as my physical side of it, I had just had an emergency surgery, I had
never I'd never had any kind of a surgery at all, before, in my entire
life.
Dr. Harpham: So this was all a very new experience.
Connie: Oh yeah. I've never even had major sickness at all. I get
the flu once every five years.
Dr. Harpham: So it was hard to believe you were sick.
Connie: Right. I felt for a long time that my body had turned traitor
on me, or something. And I had to work through that. But once I got
through the initial part, then I, you know I would have days that I
would be down. But then I would just talk to myself like my counselor
told me to do and say, "you will get through this, and you've survived
other things" and you know "whatever you've gotta do you're
gonna do" and then I'd feel okay again.
Rebecca: I think one thing that boosted my hope was finding other
survivors who had long term survival. At the beginning I tried to call
the various networks and they were not able to team me up with anyone
at my stage of disease who had survived, and that was very scary.
Connie: I couldn't find anybody that had ovarian cancer at all.
Rebecca: Well, the American Cancer Society has a program called
Cansurmount and through that I found a woman with Stage IV ovarian that
has survived 29 years. And then I had hope. And then also most ovarian
cancer survivors know of the newsletter "Conversation", and
Cindy Malonson, the editor, is also a long term survivor and has actually
a newsletter with long term survivors listed and their life stories.
Dr. Harpham: And see, putting a face and a name to an idea, you
had the idea that if one in a hundred survives, I can be that one. But
if you actually have a name and a face of someone who was that one,
you know in a whole new way that it really is possible. And that feeds
hope.
Rebecca: And through one of the cancer organizations that teamed
me up with someone, I found another lady who had had my same type of
chemotherapy years ago and was a five year survivor without a recurrence.
And she was a model for me and that helped me to retain hope when it
was clear from the some of the doctors said they did not see me as a
long term survivor, but I felt, my friends see me that way...
Dr. Harpham: And that's one of the great things about the American
Cancer Society's Cancer Survivors Network, because it's an easy way
for you to connect with other people in your situation. It's an easy
way for you to find those people who are one in a hundred, the people
who are doing well.
Connie: I think it is fortunate that you had that much society
support. I never did find it until after I was through with my chemotherapy
and everything.
Dr. Harpham: I'm also curious, from Rebecca, you know you mentioned
that quality of life was a high priority to you, even higher than quantity
of life. Did your fear of being in pain, or did the pain you were having
itself affect your sense of hope?
Rebecca: I don't think it was so much the pain but the fear of
losing my independence, because I live alone. Because it was absolutely
crucial to me to keep working in order to retain insurance, that was
a big fear for me. And I noticed that at times, it also affects energy,
because there are times when I'm upset or fearful and I actually had
more trouble with fatigue and more difficulty walking with my nerve
damage, than I do when I'm feeling more positive.
Dr. Harpham: Before we leave this topic of trusting your doctors,
Rebecca, you mentioned how that one time when you talked to your doctor
it seemed to change his attitude for that one visit. Did you ever go
back and try to talk to your doctor, or send him a letter about the
effect of his sense of hopelessness on your survival? Or for instance
the fact that you're now three years out and really enjoying your life?
Rebecca: I ran into him about a year ago when I was at the hospital
with a friend who had breast cancer, and I was able to talk to him a
little bit, but I did not address that particular issue. I had some
questions about why he did or did not do certain things during the course
of my treatment, since I am very much impaired because of nerve damage
from the chemotherapy.
Dr. Harpham: So you asked him like some specific medical questions?
Rebecca: Yes.
Dr. Harpham: But you did not address the communication.
Rebecca: No, I tell you, I pretty much gave up on him when he said,
Oh, it's all in your head after we had this huge discussion and I thought, Oh,
well, maybe there's hope that we can salvage this relationship. And from that
experience I learned, as I talked to new cancer patients, I tell them, if you
don't feel comfortable with the oncologist right off, get someone else, because
it's not going to work and it will affect the way you feel about your treatment.
I would dread going to my treatments. No one likes to go to chemotherapy, anyway,
but I would just become ill just thinking about having to see him the next time.
Dr. Harpham: So your relationship with your doctor very much affects
how you feel, how hopeful you feel, and how you do. But like a marriage, the
relationship with your doctor needs work, it needs attention, and sometimes
you can make it work and as in your case, sometimes you can't. And it's not
your fault, sometimes it just doesn't work. But the bottom line is, you NEED
a good relationship with your doctor, and if it's not working, it sounds like
you need to find another doctor. Which is what you did. It's a very emotional
topic when you're vulnerable and depending upon the doctor. The next topic I
want to address is asking for and accepting help. Rebecca, you were single,
you had no children to help you out. Tell us what role the help of others played
in your survivorship?
Rebecca: I could never have survived without my friends. Because
my work involves physical labor, as a janitorial contractor, I had seventeen
friends volunteer to help throughout my convalescence, and also through
my cancer treatment. I came home one day to the house and there were
two elderly men and a young boy mowing my yard; I had friends who gave
me money, gave me trips, drove me back and forth to treatment. I actually
had moved next door to my best friend, who cooks for me now, and I have
some wonderful social support, without which I have no idea how I would
ever have been able to survive this.
Dr. Harpham: Was it ever hard to ask for help or to accept help?
Rebecca: In the beginning, yes, because I had superhuman energy
for 46 years, and I learned that if I did not have help, I would be
unable to do things later. For example, during chemotherapy, I had to
ask a friend, would you please change the sheets on my bed? Or someone
would come over and they'd ask, What can I do? And I said, I would love
to have the bathroom vacuumed, could you please do that. So I learned
when people asked, it made them feel better to be able to do something,
since they could not make the cancer go away. And I let them know what
I really needed specifically.
Dr. Harpham: Did you ever run into trouble? Did people ever disappoint
you when you asked for help?
Rebecca: There were times when I felt lonely but I think this is
normal. I think it's hard to go through cancer single, but as far as
asking someone for help and them not responding, no I did not have to
deal with that.
Dr. Harpham: Connie, how about you? How did support, how did help
from others play into your survivorship?
Connie: I needed it for the support, it was a very strong factor
in my attitude. I knew that with people behind me that I can face the
world again. I knew that I had strength there. They'd remind of you
know, well you did this and you did that. I had to be the strong one
in this marriage many times, and you know, that kind of thing. But in
the family, now I was fortunate that my insurance covered so I didn't
have to worry about the financial side of it. I didn't have to work
during my chemotherapy, but, my husband listened to me talk about the
same thing over and over and over again, till I finally got it talked
out. That kind of support was what I needed.
Dr. Harpham: So, the emotional support, the listening support...
Connie: Yes.
Dr. Harpham: Now, did your husband have any trouble knowing what
you needed or how to listen?
Connie: No. We'd been married about thirty years at that time,
and we've always had a good communication. He had more trouble knowing
what I needed physically. He would try to, like, I'd be too weak when
I'd just had surgery, I was too weak to like, cook, and he'd want to
fix me something spicy, and I'd say, no, no, I just want something very
mild. So he had to relearn some cooking, you know that kind of thing,
the physical side of things.
Dr. Harpham: What about your husband's feelings about what was
going on? How did he work out his feelings and his emotions?
Connie: By our talking. He was, he had major problems, he was on
disability because of severe depression, when it hit. He was off work
fighting that at that time. And in a strange way it was a help to him
because it took him out of his problems, and he had to step in and help
me fight mine.
Dr. Harpham: And a lot of cancer survivors say that also there's
a tendency to become very self-absorbed when you're going through cancer
treatment. And many cancer survivors will talk about, even during their
treatment, or during their recovery, reaching out to others and finding
that helping of others helps them. Rebecca, can you talk about that
a little bit?
Rebecca: About reaching out to others? Yes, I have always done volunteer
work, and while I have not been able to do it as much since my cancer treatment.
I feel that has helped me to focus on other people's problems to try to help
them and also through the cancer networking, making myself available to encourage
newly diagnosed patients. This has helped me to try to put a more positive spin
on my experience, and had the sense that I want others to spare themselves the
difficulties that I've experienced. I really want to make their life easier
through the lessons that I've learned.
Dr. Harpham: And doing what you're doing right this minute is one
of those ways, because when people read or hear about these interviews
on the Cancer Survivors Network, they may prevent a problem, that someone
else has. Connie, I understand that your cancer precipitated a big change
in how you see yourself. Tell us how your illness changed how you feel
about doing nice things for yourself. We talked about helping others,
what about doing nice things for yourself? And why is that important.
Connie: It was a major change for me. Prior to the cancer I would
sacrifice whatever I needed to do to help somebody get what they needed,
or do something for them. And as a result, my attitude changed to hay,
I was a person too, and I had my own likes and my own dislikes and my
own wishes and I found myself doing things for example, one of the things
I've always wanted to do was take a cruise. My husband gets seasick,
he refuses to take a cruise. And I was just like putting it off. I got
through with cancer in June and I took a cruise in August! And I went
by myself. And I enjoyed every minute of it. Because that was something
I wanted to do. Going through, that was part of the counseling that
I get, where she helped me to see that my life had a value and no, you
can't predict the result of chemo and how the cancer going to come out,
but while you're here, enjoy every minute of it. And there's been several
things, I made a list of several things that, yeah, these are things
I'd like to do.
Dr. Harpham: Now, was taking care of yourself or doing the things
you wanted to do, ever a bad thing? In the sense, did it ever cause
tension with others?
Connie: A little bit with my husband, because it was such a change,
and so I could get him to understand that I needed this now. That I
couldn't be his wife and mother and whatever all the time, that he had
to stand on his own two feet once in a while. We went through a little
bit of a rough period with that. But, talk it out. We just kept talking
until we got it all straightened out.
Dr. Harpham: So people change because of their cancer experience
and relationships change because of the cancer experience. And what
about you, Rebecca? When we talk about people doing nice things for
themselves, sometimes cancer gives people permission to do things they'd
never do before, a lot of patients with cancer worry that their needs,
their emotional, their physical needs, are making them very self centered
and selfish, which has negative connotations, but in fact this idea
of taking care of yourself, doing good things for yourself, can be very
necessary when you're going through treatment. But it also can be a
good thing. So how has your sense of taking care of yourself, doing
good things for yourself, changed, if at all, because of your cancer
experience?
Rebecca: I think I got the sense that you can't put off things
that you wanted to do. As Connie said, perhaps you make a list, maybe
even mental, of things you want to do and you want, while you're feeling
good. I took a trip after chemotherapy and I told a friend I was never
gonna be younger or healthier and I took a wonderful trip, and that
has been a good thing as far as taking action. You don't put things
off.
Dr. Harpham: So you kind of "seize the day".
Rebecca: Yes, and I've always been a person who's been outgoing
and helpful to others, but I find myself wanting to really let people
know that I love them and care about them. And so if I'm not physically
or financially able to help them as much as I have in the past, I let
them know verbally and through letters and cards how much they mean
to me.
Connie: Hugs have become much more important in my life, too.
Dr. Harpham: You're talkin' to the right person! I love hugs. Anyone
who knows me knows I love hugs.
Rebecca: I found that the children that are my friends have been so
supportive. But I always get down on their level, so I'll crouch and the little
kids will come and hug me. And that has been an encouragement.
Dr. Harpham: We talked about asking and getting help, and one of
the reasons many cancer patients need help is because they develop significant
fatigue during and after treatment. And this fatigue is more than simply
tiredness after a long day. Patients can have difficulty doing ordinary
tasks, such as making breakfast or taking a shower. And cancer related
fatigue can manifest itself in many ways other than tiredness, such
as difficulty concentrating or remembering things; mood shifts, mental
weakness, clumsiness, and so on.
The problem with fatigue is that it's invisible, and it's difficult
to measure, yet it can affect every sphere of a person's life. Rebecca,
I understand you suffered from fatigue related to your cancer and probably
from dealing with the nerve damage, the difficulty walking. Share with
us how you felt when you were tired, and how you would rest your fatigue.
Rebecca: I felt like if you held a gun to my head and told me to
move, I couldn't do it. And even now, when I get tired, it takes so
much effort for me to move and walk, the energy will suddenly leave
my body, like running out of gas. And I just know, that's it. I've got
to lie down right here, right now.
Dr. Harpham: What did you learn about your fatigue? What made it
worse, what made it better, how to work around it,...
Rebecca: Emotional stress makes it worse. Physical activity makes
it worse. I found I have to take rest periods, where I lie down.
Dr. Harpham: How long will you rest?
Rebecca: I don't know. Half an hour, an hour, two hours. It depends
on how tired I am. I don't recover after a good night's sleep. So if
I do something one day, the next day I have to plan, that I'm just gonna
have to rest, and not do anything significant.
Dr. Harpham: How has the fatigue problem changed over the past few months?
Rebecca: I'm working on exercising, to keep what I have. I'm doing
propreceptive training which is training to help my legs to work together.
And I'm doing something called interval training which is where you
exercise, do treadmills for a few minutes and then you rest for a few
minutes, walk one minute, rest 5, do that for about 15 minutes and that
may have helped, or at least I feel like I'm doing something.
Dr. Harpham: Are you doing that under doctor's supervision or by yourself?
Rebecca: Just by myself. And as Connie said, I think the issue
with cancer is the loss of control and so by exercising, even a little
bit, I feel like I'm doing something.
Dr. Harpham: Well, I'll tell you, there is data out there and a
lot of research going on to talk about the benefits of exercise during
and after cancer treatment. Just like we saw a lot of cardiac rehab
centers pop up around the country, when we saw the benefits of rehabilitation
exercise after heart attacks. We are now, a lot of doctors are looking
at the role of exercise is preventing debility and improving outcome,
improving energy, during and after treatment. So I think you're on the
right track there. Did you talk to your doctors about your fatigue?
Rebecca: Yes. I have complained about fatigue since the very first
treatment that I had and it's been a puzzle and we've done exhaustive
testing to see if there's some other reason why I still have the fatigue.
Dr. Harpham: And to look for something fixable.
Rebecca: Right. And basically the neurologist said the nerve damage
probably won't get any better and it might get worse, and indeed it
has been more of a challenge. So I really have not talked to a physical
therapist and we've tried to figure out different things I can do, exercises
to keep myself from losing what I've got.
Dr. Harpham: Has your workplace accommodated your needs? Your physical
needs regarding your legs and regarding your energy?
Rebecca: I have contracts, so the people have been wonderful, you know
the high patrolman helped me with my cleaning assignments, but just in the last
few months I've had to give up most of my work. I'm no longer able to work because
I'm just too tired. You know, I'd work for ten minutes, I'd have to lie down
for ten. And so, I've, it's been too difficult to continue so I've recently
had to apply for Social Security disability, although this is something I have
really fought for years. I have worked when I couldn't walk, and I still, it
has been a real emotional blow to have to give up being able to support myself.
Dr. Harpham: People think of losses happening with the cancer diagnosis,
but in fact, there could be very significant losses after recovery,
even when the cancer is in remission. And that's hard. You mentioned
the insurance a couple of times. Can you fill us in a little bit about
how your insurance situation is, how you worked your way through the
insurance problems?
Rebecca: I had private insurance that was really quite excellent.
Whenever, because insurance pays, a lot of people are familiar with
the term "reasonable and customary". They pay a certain amount
and you have to be responsible for anything your doctor charges in excess
of that. And I recently found out that I had some major problems with
the cancer center about billing, and finally I stopped having follow-up
care because of hassles with insurance. And only recently I found out
it wasn't because of my insurance being too cheap, it was because the
cancer center charged me wrong about 75% of the time that I visited
my doctor.
Dr. Harpham: How did you find that out?
Rebecca: By accident. I felt like I needed to change doctors because
I could not afford a $300 or $500 office visit, and so when I talked
to someone called a financial counselor, and told her that although
the charge was always for an intermediate office visit, the charges
varied. So it was like Russian roulette, once it would be five hundred,
one it would be three hundred, and so by talking to her, I found out
that that was not correct. And then I also found out that I had been
overcharged about $1300 for a surgery that I'd had, a small surgery.
So because of these stresses, I almost felt that I would almost rather
have untreated cancer than hassle with the medical...it was so humiliating,
and stressful dealing with the billing people, it was such a horrible
experience, that I just couldn't handle it anymore.
Dr. Harpham: It sounds like you did find out about professional
services that can help you through the logistics of the billing, the
insurance, finding out whether the bills are accurate; getting them
paid,...
Rebecca: This happened only after I persisted for about a year
and a half, where I had constant stress for a year and a half and it
was actually the worst part, it was on par with the cancer experience
was dealing with the medical billing people.
Dr. Harpham: So how are you dealing with all the insurance and the bills
now?
Rebecca: Well, the internist that I've been seeing, she's been
very kind and helped me to get physician's samples of drugs, she's helped
me in that way, and I am basically not having follow up care at the
cancer center because I can't stand the stresses.
Dr. Harpham: So, are you having it elsewhere?
Rebecca: No.
Dr. Harpham: Do you feel like you're getting optimum medical care?
Or is your medical care being compromised by your need not to deal with
the insurance hassles?
Rebecca: I don't feel like my life is at stake, but I definitely
feel that my access to good medical care has been compromised by incompetent
billing people. And I can't imagine people who are really sick and not
as sharp mentally, they're elderly or whatever. I'm sure that a lot
of them are totally frustrated, or are paying things that they shouldn't
have to, and I'm sure it has an effect not only on their health but
their emotional well being. And it's also affected the way I felt about
my cancer center doctors, because I feel abandoned.
Dr. Harpham: These are all incredibly important points. When we
started the interview Rebecca, you told us how important research was
to you in terms of dealing with the medical aspects, and I would suggest
that research is similarly important when dealing with non medical problems.
Such as insurance, billing, relationship with the doctor, and I'm happy
to say that there are a lot of excellent resources available to patients
and their families to deal not only with the medical issues but with
these non medical, cancer related issues. The National Coalition for
Cancer Survivorship in Washington, DC, they have a web site. They're
available by phone, have looked at and worked on these issues of access
to medical care, billing, proper insurance, and all of those things.
And I would recommend you connect with them and pursue the difficulties
and challenges with the insurance in the same way you pursued, very
effectively, the medical challenges.
Rebecca: One thing I think that has helped me in dealing with certain
ones, if I find someone who is helpful and competent, I always send a thank
you note. I always let them know that I really appreciate what they've done
for me, and I think in that way, you are able to get better care by expressing
appreciation when someone does the right thing.
Dr. Harpham: That's an excellent point. The other thing is when
these non medical issues come up, it's a wonderful place for family
and friends who want to help, who want to be supportive, to help you
get information and get these problems taken care of. One of the things
that makes people angry about cancer is the financial burden, and Rebecca,
can you tell us about anger?
Rebecca: I would think that anger is the most overwhelming emotional
aftermath of cancer treatment, is anger about lasting side effects such
as fatigue and nerve damage, I've lost my thought, I just got so angry...
Connie: Can I step in here? Anger is a major part of it, but for
me, anger was the best thing that could happen to me. Because I got
mad enough to fight back. The problems with the insurance that Rebecca
was talking about, I was in their face from day one, I was watching
those bills from day one, I had been through it already once with my
husband and I wasn't gonna put up with it again. They knew, there would
be times I wasn't very nice. And I wouldn't apologize. I didn't feel
good and they were messing around with something. I would get angry
and they would know I was angry. The anger helped with the fighting
back on the chemotherapy, "You're not gonna defeat me! I'm gonna
be stubborn here and I'm gonna be mad!"
Dr. Harpham: So you turned around that anger, you used that anger
energy in a positive way. In ways that only helped you get things done
and helped you feel energized and positive and "you'll show them".
Connie: Yeah, you got it. And I mean, there were times that I would
be getting down, and all I'd have to do is get good and mad about something,
and then I'd fight, come on, let's take this on, what's it gonna take?
Dr. Harpham: Rebecca, how did anger affect you? How did it make
you feel and how did it affect how you dealt with treatment, how you
dealt with family?
Rebecca: I think the anger I've had has made me become a seeker
of knowledge, because it's helped me to regain a measure of control.
Even now, with the nerve damage, with the aftermath, I've done some
research. I've got some notes from a conference the Oncology Nursing
Society had to help me, got involved in researching peripheral neuropathy,
there's different associations that can help. It's helped to energize
me, give me a sense as Connie said, I'm not gonna let them get the best
of me. And I actually heard recently that in a study of cancer survivors,
the ones who were joyous and positive lasted longer than the passive
ones. And also the ones who got angry and let people know and expressed
themselves and said, "I'm not gonna let you trample on me any more."
These patients also did better.
Dr. Harpham: It sounds like you were angry that you didn't get more information.
Rebecca: I was angry that I had reported treatment side effects
that were dismissed as normal, that have actually turned out to be life-altering,
lifelong side effects. So there were things that I wish I had known
then that I would maybe have made different treatment choices.
Dr. Harpham: What do you wish you knew then?
Rebecca: I wish I knew then that nerve damage can manifest itself
as weakness in the legs, I wish I knew then that there were premeds
that can prevent neurotoxicity...
Dr. Harpham: Now, were those standard pre-medications, or were they investigational?
Rebecca: Those were standard for other types of drugs than I took but
they can work ...the nerve damage could have been prevented if I had been pretreated
with certain drugs. Now they are investigating other types of drugs that can
prevent nerve damage during chemotherapy but there are more options open now
than there would have been then. But also had I recognized that I was having
nerve damage, I might have insisted on treatments that were a little further
apart, or instead of going for eight treatments, I may have opted for six; I
don't know.
Dr. Harpham: How do you deal with the fact that you know this now
but you can't change what happened?
Rebecca: I have tried to educate others about ways that they can
prevent nerve damage. I have also taken notes from the Oncology Nursing
Society Conference on Nerve Damage. And I called my original chemotherapy
nurse and asked her if she'd be interested in these notes, and she was;
so I'm hoping that my trying to educate other health professionals even
thought I'm not a health professional, I feel like that's my status
now...
Dr. Harpham: That's a very important contribution. What about what
would you tell other patients who are where you were before treatment?
Rebecca: To scream and yell, if you're having problems, and don't
have anything dismissed as normal. Find out why you're having these
problems, and what you can do to change that.
Dr. Harpham: How can others find our about these things? Where do they
go to learn?
Rebecca: I think networking with their online support group. There
are ordinary support groups, have a wonderful resource for the cancer
library which tops all of the cancer organizations, which has helped
do research for me because I'm not computer literate am not very good
at it. And just calling others, and calling the American Cancer Society
also, and just try to get information from any source you can. Try to
deal with your...
Dr. Harpham: Again, obtain sound knowledge and communicate, communicate
with your doctors, your nurses, and the people around you. Before we close,
I want to bring up the flip side of this, one last topic, we've talked about
the difficulties of going through treatment and the difficulties that can occur
during recovery. But the bottom line is you've both had very worrisome cancers
and you're both doing, overall, very well. You're both in remission, you're
both surviving your cancers. There's a phenomenon called survivors guilt. It's
when patients feel bad when they hear about someone else who had the same type
of cancer but isn't doing well. Has that been an issue for either of you? In
some ways you feel guilty for doing so well, you feel guilty for surviving a
type of cancer that your doctors painted a grim picture.
Rebecca: I'd say, on a small scale. Because when I was first diagnosed,
I went to a support group and four of the ladies had ovarian cancer.
Of those, two are now dead. And one was in her second recurrence, the
other is in her third recurrence. So in a way I felt, I've done so well,
not having a recurrence, and I'm not planning to have one, but there
are times when it doesn't seem right.
Dr. Harpham: What do you feel when you think about the fact that
you're doing so much better than the average patient?
Rebecca: I'm glad. And I don't know why, but I'm grateful.
Connie: Like I said before, I've never actually had a chance to
talk to others that had ovarian cancer. I've worked around others who've
had other kinds of cancer. I always felt like, "I have survived.
There's a reason that I've survived, maybe I don't know it yet, but
there's a reason there, and it might be to do things like this, to help
educate, to help enforce the idea of positive attitudes." But I
don't think I've really felt a lot of guilt. It really wasn't...I think
part of that was the counseling that I went through, too.
Dr. Harpham: So the counseling helped you?
Connie: Yeah. Because there's nothing to feel guilty of.
Dr. Harpham: Well, you know what, that's exactly right. You feel
guilty when you do something wrong and surviving your illness, that's
the idea. You didn't do something wrong by surviving.
Connie: I had to take the research for myself maybe a little bit
further than others did. I actually took, I have a bachelor's degree
in biology and I actually took some master's level courses so that I
could get into what causes cancer and you know, at the cellular level.
And that did a world of good to me to realize that it wasn't my fault
that I got sick.
Dr. Harpham: That's right. And it's good that you survived. It's
ONLY good, and we just wish everyone could survive. Any last thoughts
before we close, Rebecca or Connie?
Connie: I think that for those who are newly diagnosed, I always
let them know that there are survivors. No matter how bad it looks,
there are survivors to every type and stage of cancer, and the other
advice I give is, "If you don't like your oncologist, there's a
thousand of them out there, quit and get a new one." And if you
have billing problems, stick with it. If something doesn't seem right
to you, it probably isn't. And just keep digging, and eventually you'll
be able to work it out.
Dr. Harpham: So, obtain knowledge, nourish hope, communicate. I
hope our discussion has helped you sort through some of the issues that
might be part of your life. A big thanks to our guests, Rebecca and
Connie, for their willingness to share their thoughts and feelings and
a part of their lives with us today. I hope that some of their experiences
will help you think about and talk about your own concerns in healing
ways. I encourage you to listen to other discussions we have available
on the website or by phone. For the American Cancer Society's Cancer
Survivors Network, I'm Dr. Wendy Harpham, wishing each of you a great
day, today and every day.
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