 |
|
|
|
Linda
|
Naomi
|
Betty
|
Dr. Harpham: Hello, and welcome to 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 over 55 years of age, who have experienced
a recurrence of lymphoma or leukemia. 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 three guests. And then
I'll open the discussion, as we talk about issues such as: the emotional response
to having a recurrence of cancer; how the cancer experience may change your
priorities in life; obtaining information about the long-term effects of cancer
treatments; keeping up with new treatment options; finding comfort in spirituality
and faith; personal and community expressions of faith.
Our
first guest is Linda, a 58-year-old woman from St. Louis, Missouri, who was
first diagnosed with Non-Hodgkin's lymphoma in 1988. She found a lump in her
groin, and biopsy and evaluation revealed a Stage I lymphoma. After having her
bone marrow harvested, she underwent CHOP chemotherapy and radiation therapy.
The next year, she had her first recurrence, which was treated with radiation
therapy. Six years later, in 1995, she developed another recurrence in her neck
and underwent chemotherapy, after which her stem cells were harvested. In January
of 2000, she developed lymphoma in her femur, the big bone in the leg, and had
radiation for that. Unfortunately, her pain persisted, and in October of 2000,
she underwent surgery to repair a hole in the bone, related to the radiation.
She's currently in remission and going to physical therapy. Linda is married
and has three grown children. Linda, thanks for joining our show today.
Linda: Thank you very much, Wendy.
Dr. Harpham: Our second guest Naomi is 63 and in 1995 developed
a lump under her tongue that was due to Non-Hodgkin's lymphoma. She
was treated with oral and then intravenous chemotherapy in the spring
and summer of 1996. In Jan of 1997, she had her first recurrence, which
was treated with a bone marrow transplant. Despite these aggressive
therapies, in March of 1998 the lymphoma recurred, and she received
radiation to her neck. In 1998 (sic), another recurrence developed and
was treated with the new monoclonal antibodies therapy, Retuxin. She
is currently in remission. Naomi, welcome to the show.
Naomi: Thank you.
 Dr.
Harpham: Our third guest is Betty, from Tulsa, Oklahoma. Betty is 74 and
was diagnosed with Non-Hodgkin's lymphoma in 1993, when she noted a lump in
her groin. She received chemotherapy and did well until 1996, when the lymphoma
recurred in a nearby area to the original disease. This time Betty had chemotherapy
and Retuxin and everything has been fine since. Betty has been dealing with
a chronic cough and some sleepiness related to her medication, but she will
participate today as best she can. Betty, we really do appreciate your participation,
and hope that you can share with us some of your thoughts and feelings about
living with a disease your doctors have called incurable.
Betty: Thanks, Wendy.
Dr. Harpham: Let's first talk about facing recurrence. The first
time through any experience is always different than subsequent encounters.
And this certainly applies to cancer. Linda, can you share with us what
it was like for you when the doctors told you that the cancer was back
the first time? How did you feel? What did you think? And how was this
experience different than your first cancer diagnosis?
 Linda:
Well, Wendy, I was originally told, by my oncologist, that the chances of recurrence
were pretty good. He said I could go 20 years without a recurrence, and I went
one year. That first year wasn't too bad. The third one, in 1995, and I have
to say I found them all myself. In 1995 when I found the lump in the back of
my neck, he really downplayed it, and after about six months I said to him,
this is really concerning me, I need a biopsy. And I guess I just knew. And
it was just a matter of saying, hey, let's get this done I know it's a recurrence,
I want to get my treatment I want to get it done with so I can get on with my
life. This last one last January started with a pain in the knee, and the last
thing I expected was a recurrence of lymphoma and it took about a month of lots
of tests before we determined that it was a recurrence. This has been a little
bit harder only because physically this has been very difficult for me. It's
my right leg and I've had to try to keep the weight off of it as much as possible,
which means I was on a walker for about four months after the radiation because
I had so much pain. And it took the doctors about 5 months to decide to finally
do surgery. They were hoping that this hole would regenerate on its own. What
happened when I had the radiation it killed the tumor, which was good, but it
left a hole in the bone.
Dr. Harpham: And your natural healing was just simply unable to repair
that.
Linda: Correct. They did a second biopsy and tried to scrape it,
hoping that that would work but it didn't. So that has changed my life
a little bit. Luckily I have a job where I work at home part time so
I worked at home full time.
Dr. Harpham: Well we're gonna get back to that but let's focus on this
issue of facing recurrent disease.
Disease, because, again, a new diagnosis a first time cancer diagnosis,
is a different experience than facing recurrence. Now Linda, sounds
like from the start, you were told that your disease was one that could
recur. So that was kind of part of your way of seeing things, and it
sounds like you accepted that as a likely scenario. So you didn't have
quite the shock that some people who think or hope they are cured, do.
Linda: I never expected to be cured.
Dr. Harpham: You never expected to be cured?
Linda: Right. And I still don't expect it.
Dr. Harpham: How do you think that helps you?
Linda: Well I think because I really have a positive attitude about
it and I'm surrounded by a lot of really positive people; it's just
a nuisance. And I know that I'm gonna have these recurrences and I'm
gonna deal with it as they come along. And I have to tell you, every
day is precious to me, because I never know which recurrence is gonna
be the one that's gonna be the last, that I'm not gonna make it through.
But I don't get depressed when I go into a recurrence. It's just, let's
get this treatment going so we can move forward.
Dr. Harpham: It sounds like it's kind of a mixture of thoughts
and feelings, but the hopeful ones dominate. In other words, you did
slip in there that you know that one of your recurrences could be a
worst situation. Meaning not a nuisance or an inconvenience, but actually
a life-threatening situation. So that's somewhere in your...
Linda: It's definitely in there but it's certainly not something that
I spend a lot of time thinking about.
Dr. Harpham: Okay. Let me switch to Naomi for a moment. Now, again,
the ideas that a recurrence is a different diagnosis than a first time
diagnosis. Tell us what it was like for you the first time you were
told your cancer came back.
Naomi: Actually the first time and even the second time, it wasn't
a major problem for me, because I kind of anticipated that this might
happen, both from the reading that I had done and the questions that
I asked my oncologist during my visits to him. So the first two times
were not really devastating, The most difficult time was after my bone
marrow transplant.
Dr. Harpham: Tell us about that.
Naomi: Well, it was basically because I was still not totally recovered
from the transplant experience. And I was weak and still had a lot of
side effects, and so to know that I had gone through all of that and
didn't get any more time than I got, that was pretty devastating.
Dr. Harpham: What were you expecting and hoping when you went into the
transplant?
Naomi: I was hoping that I would at least get a long remission.
Dr. Harpham: And by long you mean?
Naomi: Well, years. You know that was my hope.
Dr. Harpham: What thoughts and feelings went through your mind
when you realized that that hope was not fulfilled? --Can you remember
what it was like?
Naomi: I was frightened. I was frightened because I thought that
I had had at that point done the ultimate by having that aggressive
procedure, and I wondered what else there would be for me to keep going.
Dr. Harpham: So you were worried about options running out.
Naomi: Correct.
Dr. Harpham: How did you feel about how much you could handle,
because you were weakened from the transplant?
Naomi: I don't really feel that that was a major concern. I guess I'm stubborn.
Dr. Harpham: Well, we like to use the word "determined".
Naomi: Determined. And I thought that I could handle that. I could
get the strength to handle whatever I had to handle, but I just, my
fear was that there wouldn't be anything that would be helpful, and
that...
Dr. Harpham: So how did you deal with that? The concern about running
out of options, and again, you'd had a very aggressive treatment, and
that remission after the bone marrow transplant was short.
Naomi: It was. It truly was, because I was still in a very weakened state.
Dr. Harpham: So how did you deal with the fear about running out of treatment
options?
Naomi: I guess I gave it up to the Lord. I, that's what I have
done a good part of my adult life that when I'm in situations that I
know I can't handle, that's what I do. And it's a wonderful peace when
you, I always try to do it myself and I usually come to the conclusion
that I can't, and that's what I do. And it's been a big, a big savior
for me.
Dr. Harpham: And a good factor in keeping focused on..
Naomi: Keeping me from getting depressed.
Dr. Harpham: How did you get information on treatment options? Did you
depend on your doctors?
Naomi: No, I didn't. I have friends, I am a nurse and I have friends
in the medical profession who did a lot of research for me, and I did
my own reading. What I found initially was that when I was diagnosed
there really wasn't much available, it's incredible what has changed
in the almost six years since I was diagnosed in terms of information
and access to it.
Dr. Harpham: Which is something that can give newly diagnosed patients
a lot of hope.
Naomi: Oh, absolutely! It's wonderful.
Dr. Harpham: And we're gonna get back to that. I'm gonna ask you,
going back to this recurrence issue, how has your emotional response
to the recurrences after the transplant changed, meaning your recurrence,
the last recurrence, in '98?
Naomi: Well, fortunately I was, after I had the recurrence after
the radiation, I was aware of Retuxin, before I ever had the recurrence.
So I already knew that there was something out there for me. So that
was not anywhere near as disturbing as the one after the transplant.
Dr. Harpham: Well, it sounds like knowing that there were options
out there is a major factor in taming fear of recurrence and dealing
with recurrence.
Naomi: Absolutely. As far as I'm concerned, it is.
Dr. Harpham: Well, let me move on to Betty, from Tulsa. Share with
us what it was like to get the news of the first recurrence.
 Betty:
Well, the very first one was quite a shock. My husband and I retired in 1990
and had lots and lots of plans for the future. So it was kind of a shock in
1993 to discover that lump in the groin, and we had the biopsy and then the
lymph node removed. And also had a little spot under my left arm, which had
been there for years, and each doctor would say, don't worry about it, it's
a little fatty tumor. And when the surgeon was removing my lymph node, I showed
it to him and he removed it and it was malignant, also.
Dr. Harpham: And that was your original diagnosis in '93.
Betty: Yes. That was really a shock.
Dr. Harpham: Now, how did your reaction to that diagnosis differ
from your reaction in '96 when you'd had treatment, you'd been in remission
for three years, and now it was back. Meaning, you're not cured, you
had cancer again. How did that reaction differ?
Betty: My oncologist had prepared me for that. He told me with
each CT scan this let's hope that it's okay, but there's always the
possibility. So I really wasn't that shocked when I was told. And I
was so encouraged because he told me about Retuxin and how well it had
done and I fortunately had been to your seminar and you had told us
about your good luck with Retuxin, so I felt real encouraged, and it
has been wonderful for me.
Dr. Harpham: So knowing that recurrence was a possibility, knowing
that people got through recurrence and actually, for instance, hearing
me speak and seeing that I was living my life fully, despite multiple
recurrences, tamed your fears when you were first told of your first
recurrence.
Betty: It really did. The only thing that really bothered me, I
knew that I was told that with Retuxin, I would not lose my hair. But
I had , my oncologist felt that I should have some chemotherapy before
the Retuxin, so I did have two treatments of chemo first before the
Retuxin and I did lose my hair. But it was not as devastating the second
time as it was the first time.
Dr. Harpham: Why do you think that was?
Betty: I knew what to expect. The first time I bought a wig immediately
when I was diagnosed and I was, I thought I was prepared. But I wasn't.
Dr. Harpham: For losing your hair. Why do you think that was? What was
so hard about it?
Betty: Just pride. It was kind of silly when you think about a simple
thing like that, compared to your life. But I just kind of hated to be without
my hair, because of my family, but they were all very supportive, no problem
with that. The second time, other than losing the hair, really was not, I was
not as concerned as I was the very first time.
Dr. Harpham: Were there anything that people said or did that helped you
through the recurrences?
Betty:
Oh, definitely.
Dr. Harpham: Share with us some of that.
Betty: I had a very supportive church family, some who had had
cancer, who were supportive, all of the girls at the cancer care, where
I was getting my treatments; my oncologist, the nurses, I just had lots
and lots of encouragement from everyone, family, friends, church, lots
of prayers. I'm from a very large family and none of them lived near
me, but they were having prayer all over the United States, and that
helped.
Dr. Harpham: I'm just curious, were there any things that made
it harder for you to deal with your recurrence? Anything that people
did or said, that made it harder to deal with these repeated bouts of
cancer?
Betty: I don't think so, because I kept such a positive attitude.
Some people would say oh, my, will it come back again? And you think
you'll be lucky enough to go back into remission again, etc. And I always
held a positive attitude and said, sure, I'll get through this one,
and if it comes back, there'll be more new drugs, if this one doesn't
work, another one will. And I just felt real positive about it. But
you have lots of comments from people. Like friends and acquaintances.
Dr. Harpham: Were there people that just couldn't understand your
attitude when you were dealing with it? Tell us a little bit about that.
Betty: Well, they thought, they acted like they thought I was going
to just give up and say it's all over, and I said, I just kept positive,
this can't happen. I still have too many things to do, too many grandchildren
to take care of, so, I just kept on going.
Dr. Harpham: Linda, what about you? Were there any things that
people said or did, that were particularly helpful, or particularly
harmful, as you dealt with repeated courses of treatment? Because again
the first diagnosis is kind of a glamorous, attention-getting thing,
but after awhile it's like, oh, this is a bit old.
Linda:
I too have been very lucky with a very strong support system, and my friends
have been very, very helpful in keeping me positive and again, like the other
two women, I've had a very positive attitude about it. And I've also found that
humor has really been good. When I lost my hair, and I only had chemo in 1988.
In 95 I had only radiation, and I was told by the nurse, that in three weeks,
I would lose my hair. Three weeks to the day it got a little thinner, by the
second day it looked like I'd had a short haircut, by the third day it was falling
out, and I was very angry that I was having to clean up this mess! And so I
took a paper bag and I stood and I pulled all my hair out. And I had a wig.
That first night I cried because I was bald and you know, the vanity thing,
and then I put the wig on my head and I was fine. And so I've always told people
who are going through chemotherapy, "losing your hair is a really good
sign, because if the chemo is killing the cells that make your hair, then you
know that it's killing the cancer cells."
Dr. Harpham: So it's the outward sign of the power of this chemotherapy.
Linda: Right. And that's about the only outward sign that anybody
can ever see. And so I think that's a really good thing. And the other
thing that I laughed a lot about, my husband and I got married after
I had gone through all this chemo and radiation, and we were having
a very small wedding, it was the second marriage and we were having
twelve of us in our home. It was our parents, our children, and a rabbi,
and he decided to get his hair styled the day before. And I thought,
you know, if you're gonna do that, I'm gonna get my wig styled. And
they did a lousy job on it. So I have these pictures with this really
horrible looking wig. When I did it myself it was great, and so I really
laughed about it a lot.
But let me go back a bit to this last recurrence. I was at a women's
retreat in February and only a couple of the women knew that I had had
a recurrence and that we hadn't decided the treatment yet. And there
were about forty of us on this retreat and we had a prayer circle where
we were doing prayers for people who were ill. And a couple of people
mentioned my name and as it went around the room, when it came time
for me to speak, I asked for healing for myself. And spending 48 hours
with this whole group of women who now I told what was going on, and
some of them were not very close friends, I continued to have that strong
group all the way through. And I see a lot of them a lot because I'm
very involved with my congregation, and it's just been wonderful. It
was like having all these arms around me, hugging me, and every treatment
that I went through, that's what I pictured in the radiation. That all
this love and all this prayer was around me and I have a very close
group of friends and we all prayed at the same time 8:30 every morning.
We had done this for a friend of ours who passed away a few years ago. When
she was first diagnosed, we decided we were going to pray at the same time every
day, and we really believed that we helped her those three years. And so I'm
a very strong believer in prayers and you don't have to be in the same place,
they can come from all over the country, all over the world, and any religion,
it doesn't make any difference; a prayer is a prayer. And so that image sustains
me a lot and I pray a lot for other people.
Dr. Harpham: Thank you for sharing that with us. I'd like to hear
from any of you how your experience as a patient the first time through,
helped you when you were diagnosed with recurrence. You were kind of
professional patients by the time you had this recurrence diagnosis.
Naomi?
Naomi: My first experience as a patient or my first experience as a cancer
patient?
Dr. Harpham: Either. What were you treated for before your cancer?
Naomi: I'd had surgery.
Dr. Harpham: Okay, how did your experiences as a cancer patient
the first time through help you when you were diagnosed with your recurrence?
Hmm. Linda?
Linda:
When I was first diagnosed I had been divorced about a year. And I had a blind
date on a Tuesday. I had found the lump on Friday, saw the doctor Saturday,
surgeon Monday, blind date Tuesday, biopsy Thursday. And we got married six
months later. This wonderful man who met me, who'd been single for ten years,
never left my side. And he helped me along with my friends and my children,
who were in their late teens or early twenties at the time, make decisions about
what I was going to do. So from the very first time that I was diagnosed, I
didn't have time to mess around with dating games, or, I had a lot of serious
stuff to deal with. And he was just very strong and there to help me through
this you know decision-making. And I knew I was gonna make it. I felt like if
I had been divorced after being married 25 years, I could certainly get through
this. And I know my attitude helped a lot. I have a lot of confidence in my
physician. I had known him for many years as a friend and I think that kind
of helped, too.
Dr. Harpham: So one thing about a new diagnosis is for most people
everything or most things are new. Establishing yourself with a cancer
doctor, learning the language of cancer, learning what all these tests
and follow ups are about, but when you deal with recurrence, it's kind
of old hat.
Linda: Right. And the first time, and again, because I knew my
physician, he had been my internist and I had to leave him because my
insurance changed. And then I was sent back to him because his specialty
was hematology. So, that helped. That this was somebody that I had known
for twenty years.
Dr. Harpham: So knowing your doctors and trusting your doctors
played a big role, and again, when you're diagnosed with a recurrence,
usually you already have a relationship with a doctor.
Linda: Right. And unfortunately, for this last recurrence it was
a different doctor because my doctor had moved out of town. And that
was a little bit harder to deal with, because I wasn't quite sure. His
examinations were a little bit different, when I would go to him and
he would check all the lymph nodes, he didn't check exactly the same
way the first one did, and yet he could not have known that I would
have lymphoma in the bone. I had seen him on a Thursday for my three-month
checkup, and I said; "how do you know nothing is going on?"
He said, "Linda, if something is happening, you're going to know,
we can't scan you every time you come in. Two days later I had the severe
pain in my knee. And so that's how we started to discover it.
Dr. Harpham: Right. So again, this relationship, this trusting, working
relationship helped you all along?
Linda: Yes, it did.
Dr. Harpham: Cancer survivors often see the world differently than
before their cancer, because the illness is not only a physical challenge
but it is a life challenge and it prompts them to reevaluate what has
meaning for them. And we're dealing with the age old questions of the
meaning of life, survivors often find that their spirituality and faith
have been tested by the illness. Naomi, can you share with us some of
how faith played a role in your survivorship?
Naomi: As I intimated before, I have worked hard on my faith journey
a good part of my adult life. I am a minister's daughter and I came
by that from the very beginning of my life. So, that has been and continues
to be a very important part of who I am and how I deal with things.
Knowing that I had a potentially terminal illness has lightened me up
a lot. My husband and I have four children and we have five grandchildren
and two more coming, and I was always very much involved in the children's
lives, and probably too involved, and after they left home. In other
words, if I thought they needed to hear something, I would very definitely
tell them.
As a result of my knowing that days and months counted an awful lot
more, I have learned to use them preciously, and to be grateful for
them and for whatever experiences I have with family and friends. I
really have, my needs are, the circle of my needs has become much smaller,
and I am much more easily satisfied with small wonders, and it really
has made a big difference and probably has made life a lot easier for
my kids, by my mellowed self. And so, in many ways, I have to say that
having a disease like this has its blessings, because I think it gives
us an opportunity to look at life more clearly earlier than we might
have. And so I see it not as a blessing we would have chosen, but as
one that has brought things to me and to my family that otherwise we
may never have experienced.
Dr. Harpham: That was BEAUTIFULLY shared. Betty?
Betty:
Yes?
Dr. Harpham: How about you? How do you think your priorities have
changed because of the cancer experience?
Betty: Well, they definitely have changed. I spend every day thanking
God for another day, and trying to live it to the fullest. When I had
my recurrence, my husband and I had been married for forty eight years,
and I kept thinking. "I've got to make that fifty", which
we did. And it's just changed our whole lives. We're much more appreciative
of everything and everybody. I don't know, life is just different. And
to have on the other side when we were saying it brings lots of sunny
things, everyone tells me I look ten years younger, because of my short
curly hair.
Dr. Harpham: Wow! Have I got a treatment for you!
Betty: I had always worn long hair, kind of pageboy style. After
having my hair come back in and cutting it short, found out that I had
naturally curly hair that I didn't know I had. And it's just been beautiful.
That's been a real plus.
Dr. Harpham: I've heard a number of survivors talk about a sense
of urgency because of facing their mortality, realizing days are numbered.
Have any of you felt that, and if you did, how did you deal with it?
Betty: On my very first occurrence I was concerned. I made out
a living will, I made up a list of well I call it my house, what I want
done with my precious little possessions that aren't that important,
and just, really got prepared, just in case.
Dr. Harpham: What was people's reaction to your doing that?
Betty: My husband was very supportive and very appreciative. The
children didn't want to hear about it. That's normal.
Dr. Harpham: Why do you think they didn't want to hear about it?
Betty: They didn't want to face the possibility. That's the only
reason I can think of. And one of my sons is a physician, and he was
the worst of all. He didn't even want to talk about it, even though
he had done lots of research for me and been very supportive. He said,
No, I don't want to hear about it.
Dr. Harpham: But how did you feel after you'd done all those preparations?
Betty: I felt wonderful. I just felt like I had done something
to help them, and hope that I would not have to use it anytime soon.
Dr. Harpham: Many survivors say that preparing for the worst frees
them to have hope and frees them to live in the moment and feel positive
about their future. Which is a bit paradoxical but I hear it over and
over again.
Betty: I felt very good about it.
Dr. Harpham: And I hear someone wanting to join us.
Linda:
Yes, this is Linda. I was just gonna say that we've done a lot of preparation
within the last few months, like planning funerals and stuff, that we had talked
about when we first met, when I was first diagnosed, and we just decided it
was important to do those things. Because we didn't want our kids to have to
do it, or to have to do it for each other, when the times comes. So it wasn't
a matter of being so worried about mortality as about being practical, I think.
Dr. Harpham: And quite frankly, every one should do that, with or without
cancer.
Linda: Absolutely.
Dr. Harpham: Anybody can be hit by a car. Life is uncertain for
everyone. It's just a condition of life. I'm curious how being in your
stage of life affected your dealing with recurrent cancer. Your children
were grown, you'd kind of fulfilled that role in your life. Many people
in their fifties, sixties and seventies are thinking about retirement
and are beginning to have friends with illnesses, losing friends. How
do you think you age, your place in life, affected how you dealt with
your cancer?
Naomi: I feel that because, I guess because I'm a nurse and have
been a hospice person and have done all of that, I have seen the other
side. And I have seen young women and young men who have had to deal
with this very early on in their lives. So that I felt like, and shared
with my children, that I have had a good life and I have much to be
thankful for, and if it were to be shortened, so be it. But I have no
regrets and I felt like there were so many people who suffered long
and hard, far too early in life and that wasn't the case for me. So
my only sadness was that I had to cut short my working years a little
bit, and that was a sadness for me, because it was a little bit like
a death that I wasn't prepared for. But other than that, I think that
having something at this stage in your life is certainly not anywhere
near the devastating effect it would have on younger people.
Dr. Harpham: So Naomi, for you, it made it easier in many ways,
both your experience as a hospice nurse and the fact that you had completed
raising your children.
Naomi: I can't imagine what it must have been like for you, to
have young children and that tremendous sense of responsibility of wanting
to be there for them and not being sure that you could be. And that
sort of pain is a little bit beyond what I can conceive of. I just,
I really can't conceive of that kind of fear that the mother of young
children must feel when they are facing possibility of their life being
shortened.
Dr. Harpham: And without a doubt, many young mothers with cancer
find that to be the most overwhelming aspect of their diagnosis. Linda,
what about you? How do you think your age played into how you dealt
with your cancer diagnosis and the recurrences?
Linda:
Well, I was 46 and had just gone through a divorce that was pretty tough on
me, and my kids. As I look at it today, with each recurrence, being 58, I feel
very fortunate to be the age that I am and having both my children married,
one of my stepsons married, two grandchildren. These are just such blessings
for me that I've been here to see these things, and I've talked with a lot of
people who lose something to their family or who has someone who is dying. And
when I see young children and young people dying, if I were to go today, I've
been very blessed with a very good life, and I feel like I'm old enough that
I've had a good life. I'm hoping that I live a lot longer. I have mother who
is 81 years old, who, thank God, has never been sick a day in her life. And
she's seen me going through all of this.
Dr. Harpham: Tell us a little bit more about that, how it is to
deal with a cancer diagnosis when you have a very elderly parent.
Linda: Well, it was interesting. I had just written myself a little
note about how things change. My mother and I had never been extremely
close. I was always the one kind of taking care of her. My father died
when she was in her early fifties, and he always took care of her and
she got remarried and her second husband died, after they were married
about 25 years, so she's been widowed about three years for the second
time. And when I was first diagnosed, I needed her, and that's the first
time, I think probably since I was born, that I ever said, "Mom,
I really need you." And she was there for me, so we really have
an incredible relationship since then, where I have, I've always been
much stronger than she is, where I have allowed her to help me and be
a little bit stronger for me. And I think it's been really good for
both of us.
Looking at it from her standpoint, how frightening it is to see a child
become ill, even an adult child. I think it's been very hard for her.
Each recurrence has been harder and harder for her and I just try to
keep the same positive attitude. She's doing great, and I hope she never
has to go through anything like this. I hope when her time comes that
she just doesn't do this. By the way, her sister had lymphoma, my aunt.
And she lived fifteen years after her initial diagnosis. And I've talked
to several doctors about that and they said there is no relationship
in a family for lymphoma. But we found it very interesting that our
diseases initially were very similar.
Dr. Harpham: Well, some Hodgkin's lymphomas do run in families. But not
the Non-Hodgkin's.
Linda:
And hers ended up going into a leukemia, actually, CLL, and that's eventually
what she passed away from. But she was also about ten years older than I was
when she was first diagnosed.
Dr. Harpham: Well, I'm gonna go to Betty and ask you how do you
think your age played into how you dealt with your cancer diagnosis
and the recurrences? You were in your late sixties when you were first
diagnosed?
Betty:
I was 67.
Dr. Harpham: And again, you were married, you had two grown children.
Betty: Right. And I think it really made it easier. Of course I'm
like the other ladies, I cannot imagine somebody young with young children
going through what I did. But I had lost lots of family members and
a son to cancer, I really I wasn't devastated by the fact that it might
happen. I thought, I've had such a good life, been married 48 years,
two grown children, four grandchildren, so I really accepted it very
well. If it happens, it happens, and I felt that I was ready to go if
the Lord sees fit.
Dr. Harpham: But you know, some people might hear what you're saying,
and think, "Boy, she's not even going to fight this."
Betty: No. I wanted to fight it but I was able in my mind to accept
it if it didn't work.
Dr. Harpham: So there was some equanimity that you could accept it if
that was the way it was gonna be, but if there was something you could do to
take care of it and keep on, that's what you'd do.
Dr. Harpham: I'm interested in how you women feel your grown children
dealt with your cancer diagnosis. Here you have children who are out
of the home, they're raising their own families, dealing with their
own lives, and now their mom has cancer. How do you think it affected
them? How did you help them?
Linda:
I was just going to say I had a conversation with my therapist about that this
afternoon. I have a daughter 33, and every time she finds a lump or a bump,
she's scared to death that she has lymphoma. And I can't get her to do a breast
self-examination because she's afraid she'll find something, so I have a real
concern about how she is dealing with this. With the initial diagnosis I tried
very hard to handle it without letting it affect my kids too much. I really
held back a lot from them.
Dr. Harpham: Meaning sharing the emotional stress or?
Linda: It was just like, I have to take care of this, the kids
have enough stuff to deal with right now so they saw me being strong
and I know they worried but they never, they weren't really involved
as much as I should have let them be involved.
Dr. Harpham: And why do you say should have? For whose benefit?
Linda: Well, for their benefit. And I found that out this past year.
I have a niece who's going to nursing
school in Oregon, and she asked if she could use me as the subject
of a paper on someone with a life-threatening illness, and we decided
the best way to do it was for me to write it and e-mail it to her. And
I gave a copy to my daughter. I actually gave a copy to all of my children.
And when my daughter read it, she said, "Mom, why didn't you let
me be there for you? You handled all that stuff all that time, and here
I complained to you about things that aren't important." And I
realized that by trying to protect them, I was not really allowing them
to share with some of the things that were of concern as I was going
through them. And until she confronted me with it, and she was very
upset, she felt very guilty. And I said, well there's nothing for you
to feel guilty about. I was trying to protect you.
Dr. Harpham: How did it change the way you feel about a healthy way to
help your grown children?
Was this before your recurrence in the year 2000? (she says yes) So
did that change how you dealt with that recurrence?
Linda: It changed quite a bit. And they were involved a lot more
this time than they have been in the past, and they knew my frustrations
because I had so many physical limitations put on me. And especially
my oldest son, who has the two children, and I've been very involved
in the babysitting and I wasn't able to do much of that. And my kinds
have been very sensitive to it. And I realized that for 11 years I really
just kind of kept them at bay, trying to protect them, and I know that
that was the wrong thing to do.
Dr. Harpham: So, being tough, trying to hold it in, really didn't help
them.
Linda: I don't think it helped them at all, no.
Dr. Harpham: What about you, Naomi?
Naomi: Well my experience was different with different children.
I have, we have a Down's syndrome child, and for her, we certainly were
not specific, but we were honest with her that Mama's sick, and that,
most of that mainly came from my husband. And that was frightening to
her. She is, while she is living on her own, she is very much attached
to her family and to us and we see her regularly, so that was frightening
for her.
Dr. Harpham: How was it for you to have to tell her? Or your husband?
Naomi: I didn't tell her, my husband told her.
Dr. Harpham: How was that experience?
Naomi: It was hard. It was very hard. She wept and it was painful.
Dr. Harpham: What about your other children?
Naomi: We have two boys and another daughter. The other daughter
is a nurse and lives close by and has two children and she our relationship
has been very close, and particularly in recent years, but she was,
you know, sort of the nurse-big sister and always asked but it was not
emotional, it was sort of clinical. But she was always there and always
calling and always asking.
Dr. Harpham: Did you feel like you could lean on her?
Naomi: I didn't, I certainly could have if I needed to, but I didn't need
to.
Dr. Harpham: And the reason for that is because of your faith and your
...
Naomi: That, and my husband was with me very step of the way, and
I have a wonderful support system and friends, so..
Dr. Harpham: What about your grandchildren?
Naomi: For the eldest grandchild, the others are too small, who
lives near by and her Mom the nurse kept her informed. The only time
that I was ever aware of her feelings about the illness, she came to
visit and I had forgotten to put my wig on. And I was sitting there
with my bald head and I saw this funny look on her face, and I said,
"Megan, would you like Grandma to put her wig on?" And she
shook her head yes. I went and got it. And that's the only time that
I've ever really been.. She's a shy gal and I haven't been aware of
how she felt.
With the boys, it's different again. Our youngest son, who is also
the youngest child, is the more sensitive, and the boys live far away,
they're not close by and that does make a difference. But has always
called and been very concerned and interested and actually flew to Boston
to see me when I was at Dana Farber having my bone marrow transplant.
The other one is far more reserved when it comes to personal things.
He's you know shared that he loves me and there would be a few moments
of his expression of concern, but other than that, it was pretty clinical
and mostly with his dad.
Dr. Harpham: And do you think that worked well for both of you?
Being clinical?
Naomi: Well, no. I mean, it makes me a little sad when someone
you love is having a hard time, you know, being open and free about
one's feelings. I always wish that it were not that way. I didn't need
it for comfort, but I understood where he was coming from, so I wasn't
offended by it, I just wished that it would have been more comfortable
for him. But that's the way he is, and people react differently to these
kinds of situations and you have to kind of take them where they are.
Dr. Harpham: Betty, how about you? How about dealing with your two grown
children?
Betty:
They are both boys, and I think as Naomi said, it's kind of different with boys
than with girls. Our oldest son is a physician, lives in the state of Michigan.
He was very concerned calling continually, coming to see me, checking out information
that he had access to, was very supportive in that way, our other son, the younger
one, lived here in Tulsa, and he is more sensitive and was quite upset with
my diagnosis and visited continually and took me to the doctor, took me for
treatments, if my husband wasn't available, so it did affect them, but ..
Dr. Harpham: Was there anything you could do to help them? What
did you try to do to help them deal with your cancer diagnosis?
Betty: Just tried to tell them that I was positive about it, I
thought everything would be okay, and tried not to show too much concern
when they were around. Tried to make it an every day affair, this is
the way it's got to be.
Dr. Harpham: Did that relationship change as you had the recurrences? The
recurrence in 96?
Betty: Neither one of them were living here then, and it, they
were again concerned, but not as much as I think they were the first
time. If they saw mom beat it one time, she can do it again.
Dr. Harpham: So they kind of got used to it?
Betty: Yes, they had a lot of confidence in me and...
Dr. Harpham: I'd like to touch on one last topic before we close
today, and that is about how obtaining information helps patients deal
with a cancer diagnosis and recurrence. Linda, what role has information
gathering played in your survivorship?
Linda:
Up until this last recurrence, I've always been able to find the information
that I need. And I've done it either through books or the internet, I do a lot
with the computer, I've had friends who've looked up information for me. I find
that the more I know, the better I am. And there's a lot of information out
there.
Dr. Harpham: How did you separate out the good stuff from the bad
stuff? Meaning: the sound, helpful, reliable information, from junk?
Linda: Well, I guess it depended on the sources I got them from.
Anything that I would find using the 1-800-FOR CANCER hotline..
Dr. Harpham: Right, which is the National Cancer Institute's Cancer Information
Service...
Linda: Right, that information I always felt was good. And that's
the kind of place that I would go to for information.
Dr. Harpham: Now, did you share what you found with your doctors? Your
nurses?
Linda: No, I really didn't. Because it was pretty much consistent
with everything that I had seen. This last time, I couldn't find any
information..
Dr. Harpham: on the lymphoma in the femur, in the bone?
Linda: Correct. And I cannot tell you how many doctors I have seen
in the St. Louis area and I would go in and they would say, gee, this
is really unbelievable, we read about this in medical school, but we
never see it in our patients. And it's like, Boy, aren't I the lucky
one! When I ended up in the surgeon's office I walked in and he said,
Boy, I've sure been hearing about you! And I said, well I know you were
in the next operating room when they did the last biopsy because they
checked it out with you, so..
Dr. Harpham: Well, we learn in medical school that you never want to be
an "interesting" patient!
Linda: Unfortunately, I was the interesting one. And I really could
not find any information, because I couldn't find anybody who'd ever
had, the information just wasn't there this time.
Dr. Harpham: Well, maybe somebody who reads or listens to this
conversation tonight will be able to connect with you through your web
site on the Cancer Survivors Network.
Linda: And I would certainly be happy to talk with people or e-mail
back and forth to give them the information. My doctors were very cautious
in everything they did I know they did the right thing and now I have
what my husband calls "Home Depot" surgery, they went in,
they cleaned out the hole, they put cement in it, and they used glue
to glue it shut.
Dr. Harpham: Hey! It works!
Linda: Hey, I said to my husband, I hope we don't get a bill from Home
Depot, the insurance will not cover that.
Dr. Harpham: Naomi, what about you? How has gathering information helped
you?
Naomi: It was absolutely essential for me. In the beginning I spent
a lot of time reading everything I could get my hands on because I had
no professional experience with my particular disease, and so it was
essential and it was essential in my relationship with my oncologist.
It was important for me to know as much as I could and to share with
him what I was learning. I would actually send him copies of the articles
and things from journals and from not only this country but England
and everywhere else. I would send them to him before a visit; he must
have thought I was crazy, anyway, I would send them to him so that he
would know what I was reading.
Dr. Harpham: How do you think that affected your communication with your
doctor?
Naomi: Oh, I think it made all the difference in the world. At
first, we would have our sort of heated discussions about my interpretation
of what I was reading, etc., but it made us, you know we've had this
relationship now for six years, and it's just made it very strong. He
really includes me completely in any decision making and allows me to
make my own decisions with his input. And it's a wonderful way to have
it when you have this condition that you're dealing with for such a
long time.
Dr. Harpham: And with the treatments changing and all that, it's not a
static field, things change..
Naomi: Exactly. And you can't expect everybody to keep up with everything
that's going on. So it helps to think you're doing some things yourself.
Dr. Harpham: You're a team player.
Naomi: Right. And there is a book called "Non-Hodgkin's Lymphoma"
that I found out of a nursing journal that I got that I ordered and
it's a marvelous, marvelous manual for people newly diagnosed with Non-Hodgkin's
lymphoma.
Dr. Harpham: Are you talking about the book by Johnston, "
Making Sense of Diagnosis, Treatment and Options"?
Naomi: No. It's just called "Non-Hodgkin's Lymphoma".
If you let me run and get the book so I can..
Dr. Harpham: Well, what you can do is put it on your web page.
Naomi: What web page?
Dr. Harpham: On the Cancer Survivors Network. There's a place for
anyone to set up a web page, and you can put information such as a resource,
this resource on Non-Hodgkin's lymphoma, on lymphoma, that you found
very useful.
Naomi: Okay.
Linda:
Wendy, I think it's possible that that is put out by the Leukemia-Lymphoma Society.
They have wonderful publications.
Naomi: The book?
Linda: Uhhuh.
Naomi: It was written by a woman whose mother had and whose husband
I believe both had Non-Hodgkin's lymphoma and she found the information
so meager that she wrote this entire book on Non-Hodgkin's lymphoma.
I had it, but I don't have it right at my hand to tell you who the author
is. But it can be gotten from any bookstore, ordered under the title,
"Non-Hodgkin's Lymphoma".
Dr. Harpham: Well, as I said, we can try to get that up on the
Cancer Survivors Network, and that will be helpful. But there are a
couple of lymphoma societies that can offer information to newly diagnosed
patients. The Cure for Lymphoma Society, the initials are CLS and the
Lymphoma Research Foundation and that's in California. Any other thoughts
about information gathering? What do you do when you hear information
that's upsetting? Or conflicting? That seems to be the opposite of what
you understand?
Betty:
I had quite a few publications sent to me by my son from the University of Michigan.
One of the oncologists there was doing a lot of research on lymphoma and my
son had access to it, which I passed on to my oncologist and he was very pleased
that I had given them to him. I was very fortunate that my husband is a barbershop
singer and he sings with three physicians that are oncologists and they all
took a great interest in my problems and Xeroxed page after page of information
they felt would be helpful to me. And that was one of the very best things that
happened to me as far as getting literature, and I did read everything I could
find. And used the internet for information.
Dr. Harpham: So we've heard how obtaining information throughout
survivorship is important, we've talked about the emotional response
to being diagnosed with a recurrence of cancer, how the cancer experience
can change priorities in life, keeping up with new treatment options;
finding comfort in spirituality and faith. I hope that our discussion
has helped you sort through some of the issues that may be part of your
life. A big thanks to our guests, Naomi, Betty and Linda, for their
willingness to share their thoughts and feelings and parts 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
web site, 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.
| 
(3 minutes 34 seconds)
