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Carol
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Sue
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Ida
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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 three women from across the country, all at least 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 my three guests, and then
I'll open it up to discussion, as we talk about such issues as taming fears;
appreciating life in the face of hardship; the power of faith; freeing your
mind of worry; dealing with lingering affects of treatment; the value of using
information services when you are confused or worried.
 Our
first guest is Carol, a 63-year-old woman from Roseville, California. She's
married and has three grown boys, all in their thirties. In 1986, she developed
stabbing abdominal pain and thought she had appendicitis. Her doctor found a
baseball sized tumor but suspected it was benign. The surgeon performed a complete
hysterectomy on Carol, and initial tests on the tumor came back benign. The
final slides, a few days later, however, revealed malignant ovarian cancer.
Carol went from feeling elated to devastated. We'll talk with her later about
those feelings. Because her tumor had ruptured, she received chemotherapy for
six months following her surgery. This required overnight hospitalization in
order to hydrate her with intravenous fluids to protect her kidneys from chemotherapy
induced damage. Carol has been an active patient advocate since her cancer experience.
Serving at the divisional level of the American Cancer Society in California.
Carol has also experienced the support side of cancer. She helped care for her
brother, when he was treated for and then died of, lung cancer. Carol, I know
that you'll be able to offer useful insights to others dealing with cancer.
Thank you for joining our show.
Carol: And thank you, Wendy, for having me here. It's
a true privilege.
 Dr. Harpham: Our next guest is
Ida,
from Dimmitt, Texas. Ida
is 69 years old, a widow, with three adult children. In the late 1990's, Ida
had been generally feeling poorly, which people attributed to her losing her
husband. She had a hernia but didn't get it fixed because of financial constraints
and insurance problems. In December of 1997, her doctor felt that she was healthy
except for her benign hernia. One month later, in January of 98, another doctor
saw her and sent her to an Emergency Room in Amarillo for evaluation. Soon after
admission, she slipped into a coma for two months. During that time, the doctors
discovered that she had a large ovarian cancer and started her on chemotherapy.
She recovered and completed her chemotherapy. The tumor had weakened her abdominal
muscles and she required nine surgeries to repair the hernia, and in fact, is
still dealing with trouble with her hernia.
An interesting twist to her story is that she remembers having
nightmares about having chemotherapy every night while in her coma, suggesting
that she could hear what was going on around her. Ida, like our guest Carol,
has experienced the support side of survivorship, too. She lost her 14-year-old
son to leukemia 2 and a half years after his diagnosis; her father to lung cancer;
a sister to leukemia, and her oldest son is now dealing with leukemia. Ida,
cancer has touched your life in many ways, and I'm looking forward to talking
with you about what you've learned. Welcome, Ida.
Ida: Well, thank you so much, because I have really learned
and this has been a good experience for me, just visiting with all of you, it's
been a real good talk time for me.
Dr. Harpham: Our last guest is Sue, from Baltimore, Maryland.
Sue is married, with three grown children. She's 57 years old. In 1990, she
went to have some minor surgery on hemorrhoids, that had been a problem since
giving birth. Her husband had just lost his job, so she decided to take care
of the hemorrhoids before their health insurance was switched. Her doctor detected
a tumor, but like with Carol's doctor, told Sue that he thought it was benign
when he recommended surgery. The surgery revealed ovarian cancer. In retrospect,
she'd had a low grade fever for a year or so before the surgery, but none of
the evaluations ever revealed the cancer. After her surgery, Sue received four
cycles of chemotherapy, and has been in remission for her ovarian cancer ever
since. However, she hasn't been free of cancer. In June of 2000, she underwent
removal of her thyroid due to thyroid cancer. Sue, welcome to the show.
Sue: Thank you very much. I'm looking forward to talking with you and
the other ladies.
Dr. Harpham: Let's open our discussion today by talking about
a near-universal emotion experienced by cancer survivors. This particular emotion
can make it difficult to obtain sound knowledge, to relate to loved ones, or
to act in ways that help you. I'm talking about fear. Carol, you go to the doctor
with pain, and you're afraid. Then you get good news, it looks benign and you're
relieved. Then a few days later, you get the final report. You have ovarian
cancer. Can you describe for us the fear you felt after hearing these words?
And how your fear has affected your survivorship?
 Carol:
Yes, I can, Wendy, thank you. It was two days after I'd been given the benign
diagnosis that the doctor came in to my room, and my husband was gone at the
time, and she said, Is your husband here? And I said, No, and she said, Oh,
shoot. And I said, That doesn't sound good. No, it doesn't. We found an area
on the slide that shows that you do have carcinoma of the ovary, but your prognosis
is good. But the minute I heard cancer, carcinoma, the heart started racing
and I just absolutely, my mind just went. And she gave me all the prescriptions
for chemotherapy, etc., but I didn't hardly hear anything.
The minute she left, I ran for the pay phone down the hall from
my room, I remember doing this, and calling my husband. Luckily I got him at
home and said, They changed the diagnosis, it's gone from benign to malignant.
Tell me I'm not going to die. Those were the first words out of my mouth to
him. He said, You're not going to die. And then walked me through what had happened
that day. Then after that then he finally got there, she got me calmed down,
of course and told me what was going to happen. But that fear did stick with
me through my treatment and it, you know, in the beginning it just made everything
seem terrible, but as my disease progressed, chemotherapy was over, then that
fear turned to "Thank you I'm glad I had the treatment. I feel like it
saved my life." So it went from one part of the scope to the other. I felt
relieved after it was all over, you know, having gone through the chemotherapy.
Dr. Harpham: What did you learn about fear? When did the fear
tend to rise? What did you learn about yourself because of the fear?
Carol: You know, the thing I'd like to say, I was very disappointed
in my reaction to the fear. I was hoping that I could be much more mature about
it, although I think probably cancer survivors all share that same thought.
I wish I had done better. You can't. You just, for the first time in my life,
I wasn't guarded. I wasn't trying to control what I said or did.
I just reacted. But as each day passed, that calmed down. The more I got from
reading about things the more I got from talking with friends, reviewing the
fact that it wasn't a death sentence yet, I was able to take it one step at
a time and calm down more. The fear would come back and then it would go away.
Dr. Harpham: Were there any things that seemed to trigger
your fear?
Carol: You know, yes. Being in the military, we have our own
charts that we have to take with us from one place to another like from my doctor
or to the hospital when I had my chemotherapy.
What I loved to do which is just ridiculous, I read my diagnosis
as it was written in my chart. And every time I read it it would just make my
heartbeat accelerate and just go crazy, but I found my self doing it over and
over again. Why I did it, I don't know. I stopped it, I can't tell you when,
which is the good news, I'd forgotten that, but reading about it or reading
about ovarian cancer, or hearing the word, would trigger the fear.
Dr. Harpham: Sometimes people do that, they read the diagnosis
over and over again because it helps it become real for them. It seems so unreal,
so impossible that it could be them, that if they look at the word or if they
say the word, it helps them. So some part of you may have needed to do that,
to make it real.
Carol: That's probably true.
Dr. Harpham: Looking back, and dealing with fear, what do
you wish you had done differently.
Carol:
I wish I had listened to my body better. I'd had bloating probably 3 months
before the pain and maybe four months longer, and because of my age at 49, I
assumed that I was probably starting menopause. I was in the process of going
through a new job and it was stressful and I was putting off getting myself
to the doctor. And then I'd have days when I wouldn't be bloated, days when
I would be. And I wish I'd paid better attention at that time.
Dr. Harpham: Has that changed how you deal with symptoms since
your diagnosis?
Carol: Yes it has, it certainly has. I pay a lot more attention
to the little things going on, whether it's a small sore throat or anything
abdominal that's unusual, I certainly pay attention to, and if I feel like it
shouldn't be there, I'm not hesitant, I always give my doctor a call.
Dr. Harpham: And what about when you feel afraid now, when
something comes up, you notice a new symptoms, a test doesn't work right, how
do take the fear now, compared to how you dealt with fear before?
Carol: Mainly I think just by mentally reasoning with myself,
or maybe sharing the fear with my husband, who has been retired and been with
me through this whole process. He's had a very calm demeanor, which has helped
a lot. But I do feel that as something new pops up, I don't deal with it nearly
as badly as I did then. Sometimes I turn to prayer, and have learned to just
turn it over to God.
Ida: Can I jump in and say
something?
Dr. Harpham: Ida, actually I was going to you just now, because,
you've lost loved ones to cancer. And the notion the cancer is life-threatening
is very real to you. And I was hoping you could describe how you felt when you
learned you had ovarian cancer, and how you dealt with your fears.
Ida: Right. But I wanted to tell you, my oldest son has leukemia
now. But they've got it in remission for now, and it's doing good.
Dr. Harpham: So cancer has really been a big part of your
family.
Ida: Oh yes, since 1964.
Dr. Harpham: Well, tell us the fear that you experienced.
Ida: I think, I guess it was my
subconscious hearing them
talk. I knew that I
had cancer and was gonna have to have chemotherapy but I couldn't come to enough
they had me so doped up on morphine.
I could not come to enough to realize, you know, to talk to them about it. But
I'm a born again Christian,
and the Lord came to me in a vision and he told me, he said, "I'm going
over the hill and you won't be able to see me, but I'm coming back here for
you and you know, don't be afraid." And I wasn't afraid.
Dr. Harpham: So your fear did calm.
Ida: It calmed me.
Dr. Harpham: Have you dealt with fear as you entered chemotherapy,
went through chemotherapy, learned your son had leukemia. Did fears arise again,
and how did you deal with them?
Ida: Well, not that much. I just prayed a lot and my church
prayed, and I talked to my cancer doctor and he said "You tell your son
that you whipped cancer, he can too." And you know, it just gave me an
uplift because I knew that if the Lord had cured me he could cure him. And I'm
still in hopes that some day they will tell him that he's cured of it. But right
now, they tell him that it's in remission, and he works at a college and he
works every day...
Dr. Harpham: So you keep that hope alive, even though you
have lost loved ones to cancer...
Ida: Yes, lost one son and...
Dr. Harpham: But the fact that you've lost someone and you've
lost loved ones to cancer doesn't make it hard for you to have hope that when
someone now is dealing with cancer that they can do well, even though others
didn't.
Ida: I have like I said when I turned my life over to the
Lord completely, it just seemed like it was a calm, a calmness that came over
me. And instead of worrying about it, I just pray about it, and so far, and
he had it I guess it was a year ago in May or two years ago in May since he
had his bouts of it.
Dr. Harpham: How did other peoples' prayer help you?
Ida: Well, I knew they were there for me and I knew they were
all praying and it just calmed me somehow or another, it just give me strength,
you know.
Dr. Harpham: There has been some writing about prayer circles
affecting patients.
Ida: Right. You know, I just feel like the Lord cured me.
Of course I had to have the doctors and had to have the chemotherapy. But a
lot of people that I talked to before I took chemotherapy said they would not
take it, but you know, the holy spirit just spoke to me and said, "take
it", and so here I am, and they call me a walking miracle.
Dr. Harpham: Well, one common fear that cancer survivors experience
is fear of recurrence and meaning fear that the cancer will return. Sue, you've
done well after your treatments for your ovarian cancer, and it hasn't come
back, but you did develop a second cancer, thyroid cancer. Can you share with
us your thoughts about fear of recurrence, what it's been like for you, how
that thyroid cancer affected your fear of recurrence?
Sue: I've always had the fear of recurrence.
Dr. Harpham: Tell us what that's like.
Sue: It's never left me. It's always there.
Dr. Harpham: Tell us what it's like. What does it feel like?
Sue: I don't know how to really describe it, what it feels
like. I'm like, I don't know, I haven't learned to cope with it any better,
it's always there.
Dr. Harpham: When you say fear of recurrence, do you actually
have thoughts of going to the doctor and getting bad news, or is it.... a matter
of feeling yourself, feeling for lumps. What is that fear of recurrence like
for you.
Sue: I do, I do. It's just something whenever I get a pain
and I'm not sure what it is, I do regular checks and I worry every time I go
to the doctor that he's going to find something. It just has not left me.
Dr. Harpham: Have you talked to anyone about your fear of
recurrence?
Sue: Well, let me just tell you with the thyroid. My thyroid
was diagnosed because I went to a new internist and he had the whole history
check and I had told him about some x-ray treatments I had as a child and he
sent me for a thyroid scan. And he was very optimistic and then,
when it was finally diagnosed I really went in panic mode.
And I can tell you,
neither my internist nor my radiologist nor my surgeon understood my panic.
This was my second bout of cancer and I'm the kind of person that likes to know
everything and I had a really rough time. There was a question on how to proceed,
whether to do part of my thyroid or all of it or whatever and finally, the radiologist
sat down with me and said, I don't understand why you are so panicky. In the
scheme of cancer this really is okay, and when he finally listened to me, he
could hear my whole history of what was going on and how I reacted then, I found
that he was different, and then I could handle it much better.
Dr. Harpham: So, talking, communicating, explaining your fear
to your doctors really helped both of you.
Sue: Yes.
Dr. Harpham: Well, it sounds, especially in your case, fear
can be a double edged sword, in the sense that your fear did lead to your diagnosis
of the thyroid cancer being very early. It sounds like they weren't really looking
hard for it until you, being so fearful of cancer, it kind of sped things along.
Sue: Well, I certainly think I had an astute internist, honestly,
I will give him that credit. But you know I told you the fear is always there,
but that's nothing that will inhibit me from doing anything.
Dr. Harpham: Well, what I'm trying to say with the double
edged sword, fear is good if it helps you get good care, if it helps you get
well or stay well. But fear can be bad if it really takes away from your quality
of life, if you're not able to enjoy things, so how do you think you can find
some balance, Sue, of letting the fear help you get good care without taking
away your enjoyment of each day?
Sue: I don't think it does. I'm just saying it's always THERE,
I don't feel it's controlling, I don't think it ever was controlling.
Dr. Harpham: Do you think it's changed at all in the past
couple of years?
Sue: Honestly, I don't. I don't know when I was sick you get
besieged by all this information and everybody has another theory and it helped
me to learn as much as I could because that's the way I handle it, so every
time I hear something new, I pursue it. And that's been the best thing for me.
Dr. Harpham: So getting information helps you tame your fear?
Sue: Yes. Big time. And one time I said to my doctor, You
know, maybe it's nothing, but something is worrying me. And he said that "You
know your body better than anybody, so it always makes sense to tell your doctor
how you feel and then he can pursue it and see if it's significant or not."
And that also has helped an awful lot, because I have a source to talk to when
I need to.
Dr. Harpham: Isn't that wonderful? So, good communication,
trusting your doctor to take your concern and pursue it.
Sue: Right.
Dr. Harpham: And that way if there's a problem, you can get
it taken care of, and if there's not a problem, you can relax a bit.
Sue: Right. That's the way, I mean has been the easiest
for me.
Ida:
Can I jump in? Talking about thyroids, I've had thyroids since
1957 and I had to have radioactive iodine, but I was very fortunate because
it wasn't cancer. But I have fought that battle, too.
Dr. Harpham: Now, did any of the three of your go to support
groups to deal with fear of recurrence?
Ida: I did not.
Carol:
I went one time to a support group and it was after I'd finished treatment,
probably six months after, and I was in full remission at that time, and there
were so many people there who were so much sicker than I was that I felt guilty.
I got that guilty feeling for being there, because I felt like they needed the
facilitator's time more than I, and when almost everyone in the support group
was still dealing with treatment and not knowing what their prognosis was gonna
be down the road.
Dr. Harpham: And I'll just add the point that it may not be
the support groups weren't good for you. But that particular support group,
the people who were attending, the topics that were being discussed, made this
not suit your needs at the time. It's kind of like somebody going to a movie
and they don't like that particular movie, it's not like they don't like movies
at all, it's just that that particular movie didn't fit their needs at the time.
Carol: If I might add, to all of you, my brother that I lost
to lung cancer last year, at the time that I was diagnosed, was in AA. And the
one day at a time theory, and how to let go of things through writing things
down on a daily basis and having a little bit of liturgy the first thing in
the morning with yourself, I started doing that.
Dr. Harpham: Journaling.
Carol: Yes, journaling is exactly the right term, and in doing
that, I could let go of so many fears I cannot begin to tell you. In fact when
you've forgotten and I am today about what I was afraid of five years ago, that
exercise is just amazing.
Dr. Harpham: There are actually some books available now that
teach patients how to journal. It can be a very effective tool for people.
Carol: It was for me and still is. I still use it on a
regular basis.
Dr. Harpham: Well, many cancer survivors like to talk about
the silver linings of cancer.
Sue: Excuse me, I wanted to get back to the support group.
I had very similar experience. I went to support group after I completed my
chemotherapy and I found that it was not for me. The same kind of thing that
I found that people were at a much more critical stage than I was and I was
looking for more to handle life after cancer, and I just was not happy in that
group. I mean, the people were very nice, but it wasn't what I needed, and I
left the support group, and actually one of the members called me and really
bawled me out, because they needed me. So it was a very difficult decision...
Dr. Harpham: In other words, you were able to help them but
it wasn't helping you.
Sue: Right. Right. Had to say no. That was very hard.
Dr. Harpham: Well, there are times when you need to take care
of yourself, and when you're sick or when you're recovering, that can be one
of those times.
Sue: That was a new lesson for me.
Dr. Harpham: One of the nice things about services available
today is that there are many different kinds of services. There are different
types of support groups. Many places have support groups for people who have
completed treatment, and in person support groups are now complemented by virtual
support groups like the Cancer Survivors Network, where you can actually get
on line, or call the cancer society and go to a topic. Many of the topics are
really not about going through a new diagnosis or treatment, but many of the
longer-term issues like recovery after completion of treatment. So, the point
that you women are making, that certain support groups may not be helpful, leads
us to encourage people to find other types of support groups that may be helpful.
Carol:
That's exactly true, Wendy. And one thing that I found in working with the I
Can Cope program, although it is an educational program, it certainly offers
wonderful support to the person who is diagnosed, is in treatment and then a
little bit toward after treatment. I found that to be very rewarding for me,
just for my own personal experience after I tried the support group.
Dr. Harpham: And one thing nice about support groups is you
don't only talk about getting through the hard times, but many times cancer
survivors have an opportunity to talk about the silver linings of cancer, the
good things that come out of the bad situation. In fact, the Oncology Nursing
Society published a wonderful book by that same title, The Silver Linings of
Cancer.
Carol, can you share with us how your perspective on life has changed since
your cancer diagnosis?
Carol:
You know, one thing that I wanted to do after I was through with treatment,
was go on a big trip. My husband is an airline pilot and is gone a lot, and
when he's home we always try to do something special, but I said, You know,
you've been out of the country all these years and it's my turn to do something.
I wanted to travel and live one day at a time, because I felt that one never
knows what's down the road. And so to this day, we had one trip to Hong Kong,
but to this day we make a big deal out of just taking a two or three day small
trip, but doing things we enjoy more than we used to. And just never assuming
anything.
Dr. Harpham: I also understand that you used to be a bit of
a Type-A, controlling personality?
Carol: Yes.
Dr. Harpham: Can you share with us your story about you and
your oncologist working on your treatment schedule?
Carol: Yes. When I had my first meeting with my oncologist,
it was in September, and he's telling me, now we'll be doing the chemotherapy
treatments probably starting off every three weeks maybe to move to four weeks,
depending on how well you pop back. And I said, Okay, Dr. Christianson, one
thing we need to get square here is we've got Halloween coming up in October
and the neighborhood's having this party. And I'm really playing a big part
in that, you could work my treatment around that, and then Thanksgiving's in
November. So either before or after that so I'm feeling kind of good for the
big meals that I'm gonna cook; he let me go on for about three sentences and
finally he said, "Carol, stop right now. You are a Type-A woman if I've
ever seen one, and he said from now on, "I am the type-A influence in your
life. You will have your treatments as I tell you, if I decide that you're going
into the hospital on Christmas day, you ARE." And that's the end of that.
And he shut me up. My husband just sat there with his mouth open and just was
applauding, because he took me to task and I listened to him and never questioned
again when my treatment would be.
Dr. Harpham: And has that generalized outside of the cancer
treatment situation? This idea of trying to control things?
Carol: Yes it has.
Dr. Harpham: And has that been a positive thing? A negative
thing?
Carol: It has absolutely been a positive thing for me because
I was always very interactive with my three sons. And at the time I was going
through treatment, they were all in college and starting new careers and of
course always feeling like I should help them make decisions for themselves,
which they didn't care for. But after having gone through that, I stopped and
let go at that moment, and until this day they still talk about how that changed
me, that I'm a changed person. I just let them go.
Dr. Harpham: How is it better?
Carol: It's better because I'm not worrying about them all the time
or trying to be one step ahead of them, I'm just allowing them to lead their
lives. And my husband and you know, friends, or whatever. You know, I'll slip
back and everything, once in a while, but still it's very easy just to let people
do it their way.
Dr. Harpham: You know, one thing people say sometimes is that
cancer doesn't cause you to lose control, it just reveals how little control
you always had. And many people find that to be a very comforting and liberating
insight. Ida, I want you to share with us what some of the silver linings of
your cancer experience have been.
Ida: Well, like I say, I just,
after the Lord, I had the
vision,
it just seemed like I was calm, I wasn't afraid.
I just knew he was gonna see me through it and I've just not worried about it,
and I feel like if he worked a miracle in me and did heal me that it won't return.
Of course, I could have it in some other part of my body. But I don't feel that
THIS would ever be a recurrence or anything. I feel like that because it will
be three years this month. And so, but I still do have a large hernia that I've
got to have fixed, but I had a knee that was wearing out and it was about as
big as two knees. And
I had an appointment to have my hernia fixed the last day of November and they
had to cancel on that account. And now they tell me I'm a diabetic, so...
Dr. Harpham: But even through all of that, it sounds like
the big silver lining for you, Ida, has been this deepening of your spiritual
faith, which brings a tremendous calm.
Ida: Right. Right.
Dr. Harpham: And what about you, Sue? What are the silver
linings of your unwanted cancer experience?
Sue: Well, one of them is knowing how much support I have,
certainly, with my husband and my children. You look at it differently, especially
with your children, where you're always the strong one for them, and you really
realize their wonderful support as adults. So that's been very nice. And my
relationship is very close with all three of my adult daughters. Also, I don't
know if you know about Cansurmount program? Well the only time I had ever heard
of ovarian cancer was reading Gilda Radner's book and listening to Gene Wilder
commercials, infomercials. So I was very anxious to meet somebody who had ovarian
cancer and survived. And so about a year about I was diagnosed was when I heard
about the Cansurmount program. And there were other ovarian cancer survivors,
and so it did a world for me to talk to them. And since then whenever they call,
I talk to numerous, at least a great number of people about it and I feel I
can be a help and support to them because I understand. And yes, you can battle
it and yes you can live, and yes you can have a full life.
Dr. Harpham: So a silver lining for you, Sue, has been this
new opportunity to be very helpful to other people.
Sue: Definitely.
Dr. Harpham: We've talked a lot about fear and one of the
ways many people deal with fear is by turning to their faith. Ida, you've shared
with us your very powerful religious experience related to your coma, and you've
shared how this has given you a sense of calm since your diagnosis.
Ida: I'd like to say that I'm not
as lucky as the other lady
was, because, see, I'm a widow. I've been a widow for it will be eight years
the 28th of this month. And I had no support from my children, because
my husband had to go to a nursing home about six months before he died, and
my children disowned me over that. And so, they came to see me when I was in
a coma, but when I got to where I knew what was going on, they were gone! And
that was it. So all I've had is my church family. But they are very close and
they're very precious. And I know anytime I call and ask for prayer or want
them to pray with me, they are there for me. So..
Carol:
Hearing your story, Ida, you are so strong and I just think you're amazing.
How is your relationship with your children today, now that you've had, first
you lost one son to leukemia, you have a second one that has it now, how is
your relationship now with your children?
Ida:
Well, it's better, but I have two sons and one daughter. And the
daughter, I don't know, she just, I went last Christmas a year ago and spent
some time with her. And I went seven whole years without hearing from her or
seeing her, but she did open up her house for me to come. And she was still
kind of giving me the cold shoulder, and she still don't communicate very much
or anything with me. But at least I do hear from her once in a while through
the mail. I think she's called me one time in eight years.
Dr. Harpham: But this does bring up the topic of cancer changing
relationships, straining relationships. Carol, How has your cancer diagnosis
affected your relationships with other people?
Carol:
Well, you know, Sue had mentioned about helping others and that is one thing
that I've been blessed to be able to do. I've worked with the American Cancer
Society now for about 12 and a half years and a lot of it in cancer control
and patient services. And I'm finding that in my choir or in my bridge group
or in my neighborhood, when someone is diagnosed with cancer, they call me.
And they say, "give me your magic words, make me feel better. I know that
you have this wonderful feeling that we can all survive this if we just work"
and so I have to slow them down a little and say, Let's listen to what's happened,
and so forth. But just in hearing my voice and knowing that I'm a survivor and
how I dealt with my disease, seems to be a great aid to a lot of people's small
facets of life.
And it's also helped me with family members. And my children and
my husband both, are so very proud of what, of first of all was able to build
through the course of my disease, but then the way that I'm able to work with
others now. And there's nothing that makes me happier than when someone allows
me to be a support to them in some way.
Dr. Harpham: Isn't that wonderful?
Carol: It's a wonderful sharing moment.
Dr. Harpham: Well, Carol, it sounds like your cancer experience
has given you a new role in life, but it's also brought a pride to your family
members, they're proud of you.
Carol: Yes.
Dr. Harpham: And it sounds like you're closer to everybody.
Carol: Yes, I am.
Dr. Harpham: Sue, what about you? How's your relationships
with your loved ones, your friends, strangers, changed since your cancer diagnosis?
Sue: Again, just like Carol, it's much closer, certainly with
my family, especially with my daughters. As I said before, they're adults and
it's just a different relationship with girl friends. As far as reaching out
to community, not only the Cansurmount program. Any time I hear that anybody's
with cancer, that you can talk you 'em and you can help 'em and you can say,
"yes you have these fears, yes, this experience is awful but there's a
life after." It's very rewarding.
Dr. Harpham: Is it ever a burden, do you ever feel about,
all you ever talk about is cancer, cancer,
cancer, and you wish people would...
Sue: No. No I feel like all I ever talk about is people
my age who've got aches and pains and...
Dr. Harpham: Health issues all the time.
Sue: We don't dwell on cancer at all.
Dr. Harpham: And, Sue and Carol, what about religion? How
did religion play into your survival?
Carol:
Religion played a very big part in mine. I do go to church on a regular basis,
I'm Catholic and so always go on Sundays. And every Sunday, for the first year
after diagnosis and even after treatment several times I'd go to mass on Sundays
and be there in deep prayer I'd shed a few tears, and when I went home I felt
better. But that some spiritual moment there...
Dr. Harpham: What do you think those tears were about?
Carol: Those tears were probably a little bit about what I'd
been through but also those tears were about acceptance that change is always
good, and that I felt the change coming over me as a result of my disease...
Dr. Harpham: So it was just emotional. You know people think
about tears as you're sad, don't cry; but it sound like tears were just an expression
of your being emotional as you made this transition.
What about you, Sue?
Sue: I'm Jewish, and I think religion is just a little different.
It's a lot more acceptance. I had these private prayers with God and this was
a new experience about talking with God privately about me, because it was always
about somebody else. So that was a little bit different.
Dr. Harpham: So what about your congregation? Did you belong
to a temple? And was your congregation a part of your survivorship?
Sue: Not really, no.
Dr. Harpham: It was more a personal religious connection to
God and prayer.
Sue: Yes, yes. No did not use religion and my congregation
as a support. There's always been members, involved.
Dr. Harpham: Did your Jewish faith offer you anything that
you really couldn't get anywhere else, something unique?
Sue: Honestly, I can't say that it did. In fact, right after--can I
say something negative? Am I allowed to do that?
Dr. Harpham: Yes. This is about being real. This is to help
people see all the sides of surviving cancer.
Sue: I don't know if you ever read any of Bernie Spiegel's
books?
Dr. Harpham: Yes, I've read his books.
Sue: Someone had given them to me when I was sick, and I actually
liked them, I thought it was good, you know, and I certainly was in need of
a positive attitude. And that year during the High holidays, our rabbi gave
a sermon putting down those books, because he felt they offered false hope,
that, hey you could have the control, that it was up to you, that you had the
power to make yourself better. And then if you didn't get better, it was your
fault. And I was terribly upset by his sermon and actually there were some people
there who knew what I was going through at the time and looked for my reaction.
And a group formed afterwards, very supportive because there were other people
doing this. And by the end of the day, we had a large group of people just talking
about it and how, what, how the sermon affected them; I was not alone, and the
book was more supportive than the sermon.
Dr. Harpham: Your point is something I have heard many times,
it's interesting how Bernie Spiegel's work really inspires and bolsters and
gives strength to many people, and other people just as vehemently do not like
the work.
Sue: But I think it's a personal....
Dr. Harpham: Exactly. And the point that something that works
wonderfully for one person can be damaging to another, and there is no right
or one way to go through cancer.
Sue: Absolutely.
Dr. Harpham: And the value of talking about it is to find
a way that works well for you.
Sue: I agree with that. If it works for you, if it helps you
get through it or cope or live a fuller life... then that's right.
Dr. Harpham: And one thing that can be hard for many people
is people volunteering what to do or what to think or what to feel.
Sue: And that I found very difficult. You know, and after I was sick
also I had a girl friend with breast cancer, and I told you I find comfort in
getting the information that I need and she found better comfort in just trusting
her doctors and whatever he said. And I've learned, whatever works for you to
cope to handle it to do a job...
Dr. Harpham: As long as you know enough to communicate well
and to take care of yourself between visits. Well, Sue, you know you've done
really well since your cancer treatment, but I understand that you do still
worry a lot. You know, cancer survivors worry about many things besides "am
I gonna make it through treatment". They worry, "how is this affecting
my loved ones?" am I doing everything possible now that I'm done with treatment
to stay healthy", people worry if they're eating right, they worry if they're
worrying too much. What did you worry about, Sue?
Sue: I don't know if it's specific. I'm a worrier. You
have to prompt me to be a little more specific.
Dr. Harpham: Okay, were you a worrier before you got the diagnosis?
Sue: Yes, yes.
Dr. Harpham: And how did the cancer diagnosis change either
how much you worry or what kind of worries you have?
Sue: Well, I really tried not to sweat the small stuff. And
I really make myself say, what is the priorities and is this really important,
and I get through a lot of things a lot easier than I used to. One of the things
I always worried about was my weight, and that still hasn't changed.
Dr. Harpham: Carol, is worry an issue for you?
Carol:
Yes it is. And one thing I neglected to say when we were on fear earlier was,
right after I finished my treatment, my oncologist told me that there was a
small, looked like a small mucinous cyst on my liver. And they told me that
if the cancer came back, it could go to the liver from the ovary. And so of
course I started worrying all over again about that, and I had to wait one month
before I could have the ultrasound that backed up the CAT scan that spotted
the mucinous spot on the liver.
And the day that I went in for the ultrasound, keep in mind it
had been about four weeks, and I had worried daily about this. My heart was
beating so heavily that I scared the technicians to death, they were administering
that ultrasound, they said, why are you so afraid? This is a simple test. And
I said, "but don't you understand, I've just been through chemotherapy
from ovarian cancer and now there's a suspicious spot on the liver, and for
me to be calm during this test is just impossible." And they could not
understand why I was so nervous. Well, that fear of finding something else just
took over my body. That was the worst that I've been through. But when I have
my oncology visits and have the blood work done, I always go through a little
bit of anxiety.
Dr. Harpham: Right. And again, you're talking about fear and
anxiety, worry is a little bit different. Worry is...
Carol: Well, worrying about the test. And I should say
I worry about this ahead of time. That's true.
Dr. Harpham: But what about worrying about, oh, if your friends
are doing okay or if your relationships are okay.
Carol: I'm a worry wart. Yes I am. But that's always been
my story, is a worrier. But I do worry about the health of my children, are
they making the right monetary decisions about buying new homes, I worry about
my husband's health and etc. etc.
Dr. Harpham: Has having cancer changed your feelings, you
know, changed how much you do or don't worry? Or not really?
Carol: I can't honestly say that it has. No. I've always been a worrier
and I still am. Daily I'm trying to combat it.
Dr. Harpham: Well, one thing that I know triggers worry in
cancer survivors is dealing with lingering effects of treatment. For example,
fatigue is a common effect that can present long after treatment is completed.
Cancer survivors deal with scars, they have funny blips on their blood tests
or scans, they have symptoms. Ida, you were very sick during treatment. Have
you any lingering effects, and how have you dealt with them?
Ida: I haven't had any.
Dr. Harpham: So you're feeling well, looking well...
Ida: Yes. Other than like I say the
doctor had told me the
22nd of December that I was a diabetic and then I would just like
to have this surgery. And (for the hernia) a year ago in August the doctor went
in and he took mash, and he did the top part of my stomach, and he said he looked
the bottom over and it didn't seem to need it. So he didn't fix it. But coming
up this March it'll be a year and it just seemed like it came up overnight,
was big as a baseball and just as hard, and real low down in my stomach. So
it's not painful but it's real aggravating to dress or get up and down, and
sometimes more than others, you know. But he was trying to give my stomach time
for those muscles to grow back so he would have something for the stitches to
hold...
Dr. Harpham: But that's been a very practical problem related
to your treatment. But otherwise it sounds like you feel pretty well.
Ida: Oh, yes, yes.
Dr. Harpham: Sue, what about you? Have you had any lingering
effects of treatment? Or are you feeling pretty good?
Sue: Well, I'm still being adjusted from the thyroid cancer.
I haven't felt myself as far as the energy level, I'm still exhausted. I just
discovered two weeks ago on some blood tests that my thyroid level of the medication
was not enough, so I have been given a different dose and I'm waiting for it
to take effect, but I feel like, God, I'm not crazy, at least my feelings are
validated. And that's good.
Dr. Harpham: So reading about it and talking about it helps
you deal with any lingering symptoms.
Sue: It does.
Dr. Harpham: Carol, what about you? Lingering effects of treatment?
Carol:
No, I'm not. I'm feeling great.
Dr. Harpham: Well, then, let's skip to our last topic for
today, and that is the benefit of using information services to fight confusion,
worry and fear. And Carol, I know you have strong feelings about this, so why
don't you lead off and tell us how information helped you deal with your cancer.
Carol:
If I can just start from the time that I was diagnosed I had called the American
Cancer Society in Roseville, California. They did not have any information services
to speak of at the time but they immediately referred me to an oncology nurse,
who was able to help me. And so after that happened, I got through treatment,
I remembered that she was so helpful to me that I vowed that I would become
a volunteer eventually and then be involved with information services , and
whether I'm receiving it or I'm giving it, it just makes me feel a better person
for it. There's so much wonderful information out there that can help one.
Dr. Harpham: How do you sort through the good information
versus the bad information?
Carol: You know, that's a good point, and probably I don't
have a real gift for that. I just try to concentrate on the information that
I need for that person and hopefully just give it in generalities and not get
too specific. If
there's, you know, sometimes when you're getting information, for example, on
lymphoma, and your not careful, it can go on and on about the cure rate or something
like that when a person's calling in, I just feel like you refer them to the
general resources first...
Dr. Harpham: And the key is referring people to very reputable
resources, The Cancer Institute, the American Cancer Society, and such. Sue
and Ida, how did information resources help you.?
Sue: I loved the 1-800-FOR CANCER number. I loved it. Because
I found it would hear people would come and tell me all these kinds of cancer
stories, and they would leave and I'd pick up the phone and call me and they
would sort out all the information for me. And I thought it was a wonderful
service, and I still tell people about it. Now, of course, the internet is available..
Dr. Harpham: And, again, I caution the internet contains wonderful,
wonderful accurate, useful information, but a lot of the information is just
terrible.
Sue: And I have learned that. So I really do say that more
cautionary, it might what it best does is maybe has questions to raise with
your doctor...
Dr. Harpham: Exactly. And that was going to be my next question,
do you share what you learn with your doctors?
Sue: Yes, Yes, definitely.
Dr. Harpham: So you validate...
Carol:
Yes I do as well share information that I've picked up...
Dr. Harpham: And what about with your friends and family?
Carol: Yes, yes, I do share. One thing that I love about the
new 800 number with the American Cancer Society now that they've got the national
one that has the cancer specialists always picking up the phone 24 hours a day,
is just you get someone to talk to who can walk you through it and not go the
wrong direction. You know, they know how to deal with these things when someone
calls for information, that they are a true gift, I feel.
Dr. Harpham: So there are lots of good services out there
to help patients.
Sue: And that's the way I felt.
Dr. Harpham: Well, I hope our discussion has helped to sort
through some of the issues that might be part of your life. A big thanks to
our guests, Sue, Ida and Carol, for their willingness to share their thoughts,
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 telephone. 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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