Dr. Harpham: Hello and welcome to the American Cancer Society's Cancer
Survivors Network. I'm Dr. Wendy Harpham, your host. Today we'll be talking
with four women from across the country, all over the age of 55, who have completed
their therapies for lymphoma or leukemia. As a doctor of internal medicine and
also a ten-year lymphoma survivor myself, I'm looking forward to a great conversation
with these women.
First I'll briefly introduce our four guests, and then I'll open up the discussion
so we can talk about issues, such as taking care of the loved ones who are caring
for you ; how to connect with others who are going through similar experiences,
and why connecting with others can be so important; keeping your body, mind
and spirit strong during treatments and recovery; and the long term effects
of cancer treatments. Our first guest is Judy. Hi, Judy, and welcome to the
show. Judy is now in her mid sixties. In 1988 she was caring for her husband,
who has lung cancer, when she was diagnosed with non-Hodgkin's lymphoma. After
treatment with radiation therapy, she has been in remission ever since.
Our second guest is Barb, who is now in her early sixties, and was diagnosed
with chronic lymphocytic leukemia in 1989, when she went in for a routine cholesterol
check. It was four years after her diagnosis when Barb first received treatment
for her chronic leukemia, and this chemotherapy was given in a clinical trial.
Her leukemia went into remission, but recurred eight to nine months later. She
entered another chemo clinical trial, then, after having problems getting into
a stem-cell transplant trial, she underwent bone marrow transplant in 1997,
and has been in remission since. Barb is married, has grown children, and also
was caring for her husband when she was diagnosed. Barb, thank you for joining
us today.
 Mary
Acker is our next guest. Now in her mid sixties, she was diagnosed with acute
myloblastic leukemia in 1987. She received many rounds of chemo and recurrent
disease was treated with more chemo. She had a smooth course and has been doing
well in remission ever since.
Let me say hello to Mary. Mary, so glad to have you with us today.
Mary: I'm glad to be part of this group.
 Dr.
Harpham: Our last guest today is Zora, who at age 73 is a long term
survivor of non-Hodgkin's lymphoma. Zora learned early about facing illness
when she had childhood polio. In 1984 she developed a swelling in her ankle
that spread to her hip and lead to her diagnosis of lymphoma. She received chemotherapy
and radiation therapy and has done well, although she does suffer from thrush,
which is bothersome. Hi, Zora, and welcome to the show.
Zora: Hello and thank you.
Dr. Harpham: Now oftentimes, women assume caretaker roles and certainly
this was the case for some of our guests. At the time of their diagnosis. Let's
first go to Judy. I'd love for you to share with us how dealing with your own
diagnosis affected how you dealt with your husband's diagnosis.
Judy: Well, shock at both, both times.
Dr. Harpham: Well
why don't you fill us in a little bit about adjusting to your diagnosis
and then finding out about your husband.
Judy: Well, I thought I was having a cyst removed, which then was diagnosed
as having non-Hodgkin's lymphoma. I was kind of shocked but pulled it
together because of my husband's position and our relationship and the
support of my four children who fortunately lived close by, and my colleagues,
and just took it one day at a time. The radiation therapy and some more
surgery, and felt that you know I could deal with it.
Dr. Harpham: So, how did your grown children play into your survivorship? Play
into dealing with the diagnosis, the evaluation, the treatment choices?
Judy: You know, we all were able, we're a very verbal
family and perhaps I should let you know that my deceased husband was
a psychiatrist and I'm a family therapist by profession, and so talking
is what we do very well.
Dr. Harpham: So
that was a big advantage to you...
Judy: A huge advantage. And so emotions have always
been right out there, so all six of us, along with some in-law children,
were able to share our shock and fears and how we were going to handle
a lot of this.
Dr. Harpham: Were there any surprises for you? You know, it's one thing to academically
know about the importance of psychosocial support, and to help other
people. Were there any surprises when you were on the receiving end?
Judy: Well, what was really surprising and very annoying
with me because I made demands, is that even though I live in a rather
sophisticated area in Silicon Valley and was treated at Stanford, I
was not given what the steps were going to be, and what were some of
the reactions I could have both physically and emotionally.
Dr. Harpham: So what did you do about that information gap?
Judy: I screamed. I demanded it. Which put me in the position of being
an terribly nasty lady, which I didn't like, but the information was
more important to me.
Dr. Harpham: You demanded it from whom?
Judy: From the professionals.
Dr. Harpham: Okay,
from the doctors, the nurses, the technicians?
Judy: Exactly. I don't know what other people's experience was, but
I went through an awful lot of radiation, and just putting on a paper gown was
demoralizing. And sitting there and waiting until it was your turn, you know,
it happened to have been a Valentine's Day and I came in with balloons and said,
"you know, it's depressing enough, I don't need to be more depressed."
Dr. Harpham: So
you cheered up the place?
Judy: Right.
Dr. Harpham: Do you think your demands made a difference in how they treated you?
Judy: One
young physician said it did. So, my attitude is,
if you just make a difference of one person you've
made a huge impact.
Dr. Harpham: Great.
Barb: I've got to jump in because my experience was, if you look at
people and simply expect that they are going to give you the information, and
kind of prompt them for it, they are amazingly forthcoming. And so I was kind,
I was later than you in having this kind of response. I guess people had been
better trained by that time. But boy, I got information everywhere I went and
every time I looked at someone and said, tell me more, they did.
Dr. Harpham: So
it sounds like information is important and whether or not you get it
depends maybe on where you are who you're working with, and also what
you ask for. Now, going back to Judy. Where do you think are the best
places for people to get information about the treatments they're gonna
get. Where did you look besides asking your doctors and nurses and technicians?
Did you use the Internet?
Judy: At that time I didn't use the Internet. But certainly by the time,
how we got diagnosed I used the Internet as well as other resources,
but I didn't. And I even called the American Cancer Society and was
unable to get information from them that would be fulfilling or satisfying.
What they said to me was that they would send me material. Well, that
I got from the medical library. What I wanted was some life experiences,
but what's going on now was not going on then.
Dr. Harpham: Again,
I think your point is well taken, I think there's been a tremendous
shift for the better in terms of information being available in the
year 2000.
Mary:
I think there's far too MUCH information available.
Dr. Harpham: Well tell me about that, Mary. How did information affect you?
Mary: I
trusted my doctor completely. I had known people who had leukemia and
they all died, frankly, and he told me that there were survivors and
I shall be one, and we will work together. And I don't think I looked
up anything or.. I talked to my nurses as to what they were doing to
me and the kinds of medication, but and my husband subscribed to Scientific
America and he came in one day and says, they've discovered these things
called stem cells. Maybe that'll help you. And that was way back when.
And but I think it's much more difficult on people now, because they
want to run over to this hospital or that hospital. I work with a lot
of cancer patients and survivors and I find that they are overwhelmed
by the amount of information, and whether they qualify for this study
or that.
Dr. Harpham: Right.
We do have lots of choices. Zora, how about if you jump in and tell
us how information played into your survivorship?
 Zora:
Well it was wonderful. My doctor was very, very informative when I was diagnosed
and he had hoped for Hodgkin's disease and of course it was non-Hodgkin's, and
he was telling me, well, the survivor rate is 50-50. And I thought, I don't
know why you're telling me this, because I will be in the top fifty percent,
and my attitude is rather, I've had a rather optimistic attitude on most things,
and I think this helped carry me through many things. My oncologist and the
radiologists were all very helpful. We also went to the 800-FOR CANCER line
and found quite a bit. The dialog group in my area...
Dr. Harpham: Which is also an American Cancer Society support
group...
Zora: Absolutely. And it was well rounded. There were
other lymphoma patients but there were patients with every type of cancer
there. And we had good sharing sessions and became very good friends.
Dr. Harpham: I want to go back to Judy for a moment. Judy, your husband was diagnosed
with cancer. Now where were you in treatment? Were you done with treatment?
Judy: Yes.
Dr. Harpham: So,
you were in remission and were you doing pretty well..feeling pretty well?
Judy: Yes.
Dr. Harpham: How
did your own cancer diagnosis affect how you reacted to and dealt with your
husband?
Judy: Well, it was just totally different, simply
because as soon as Howard got diagnosed, they gave him five months.
It was lung cancer, and had progressed to the end stage before we had
any idea, you know he'd had no symptoms of it before. So there was just
no comparison.
Dr. Harpham: And it sounds like you didn't have a lot of options.
Judy: Exactly.
Dr. Harpham: How
did information play into taking care of your husband?
Judy: At that particular point I was much more sophisticated, and had
a lot of resources of my own oncologist.
And I had become personal friends cause I had gotten him started on
a support group, the doctor running the support group for family members
who have cancer, and everything and so that I had a huge amount of resources,
as well as family members who had resources. So we wound up and used
them with Howie for some experimental treatment which he was not a candidate
for, etc. I was much more in control of what was going on with Howard
than I was with myself, but I think that might be normal. When you're
a patient you revert very much to a childlike position in many cases
and want to be taken care of, and when you're a caretaker, you become
the parent.
Dr. Harpham: So He'd let you take care of him?
Judy: Yes.
Dr. Harpham: Did you get information on how to take
care of him? I mean, you'd never dealt with end of life issues, and
all the medical things that go along with someone with terminal disease.
Judy: No. And made some very concrete decisions and just flew with it.
But no, there wasn't anybody out there except for some other professional
colleagues who talked to me about it. But not that I had any resources
from any of the hospitals that Howie went to except fighting with particular
physician who felt he should die in the hospital and I felt he should
die at home. And he died at home.
Dr. Harpham: Where did you turn for support, Judy?
Judy: I just really, again, my family and close friends. I did not reach
out to a cancer support group. But that might just be my personality
that I did not reach out there. I think and possibly the uniqueness
of the bonding that exists with not only my children and married children
but also with my friends, that I didn't need to go outside to get it.
Dr. Harpham: Judy, were there any special things that
you did to try to keep your body, your mind, your spirit, strong during
your treatments and recovery, or that you tried to do to help your husband
keep his body, mind, spirit strong as he dealt with terminal disease?
Judy: Well, what Howard and I did was review our life.
Good or bad, I made a special time for us ... (she cries) .. it's a
bad time of year to talk about it. It's anniversary time.
Dr. Harpham: Anniversaries
can be very powerful. They can bring up, even just the smell of the
air, the color of the leaves, can bring up a lot of very strong memories
and feelings.
Judy: right.
Dr. Harpham: But
it sounds like you really stretched that time, you fitted as much as
you could into that time, it was a very meaningful time.
Judy: Yes. And it was a joint thing, so that I had special time. Each
of my children had special time, and there were certain rituals that
Howard wished to have with our grandchildren so that he had a real need
to be a part of their memories as we did that was keeping.
Dr. Harpham: And all of you can hold on to that from now on. Now, when grown
children deal with children who have cancer, sometimes if affects their
sense of their vulnerability. How do you think your illnesses have affected
your grown children, in terms of their own cancer screening or worries
about their health?
Barb: Well, I have chronic lymphocytic leukemia,
the studies show that there is a 30% familial genetic predisposition
to get the disease so that one of the first thing that we did after
I was diagnosed was to look into the possibilities. And I was fortunate
to have contacts with people at the National institutes of Health, who
put me in contact with people at the National Cancer Institute, where
they are doing a research study on familial CLL. And what they told
me very sweetly was, Sorry, you don't qualify. I've never heard more
delightful words! So from that point of view my children were reassured.
My kids were all grown and out of the house, married, in many cases,
parents, so it was easier for them to deal with the fact that I was
still working.
I was still going about my daily business, I was doing too much, as
usual, and so it wasn't something that they had to accept right away.
They could kind of ease into it, so it was easier to deal with. While
I wasn't in denial, I was diagnosed in 1989. No treatments until 1993.
And that made a tremendous difference.
Dr. Harpham: Absolutely, cause it wasn't like this big crisis emergency and suddenly
your world is turned upside down.
Mary:
I was diagnosed on Friday afternoon and was in the hospital for four months
on Monday morning!
Barb: That's the difference between chronic and acute.
Mary: There was a tremendous shock.
Dr. Harpham: With no time to adjust.
Mary: I had Saturday. And I sat down and wrote letters to everybody whom
I was supposed to be going to New York to visit friends, and I just
had to write and say I'm terribly sorry but I'll be in the hospital
fighting leukemia. And won't be there.
Dr. Harpham: Now,
Mary, to whom did you turn for support?
Mary: My husband. And I had great faith in my doctor, and once he told
me there were survivors, I thought, well, I shall be one! And it just
never occurred to me that I wouldn't. Which got to be kind of a Pollyanna
attitude, but it worked.
Dr. Harpham: But it worked. What about during the rough times? Tell us a little
bit about your course of treatment and dealing with the hard times.
 Mary:
Well, I was very lucky. I had never had any antibiotics in my entire life. I
lived out of doors, we raised our own vegetables and fruits, everyone in my
family had died of cancer. My brother at 38, my mother at 60, my grandfather
of leukemia, and an aunt of leukemia, so I knew that probably I was gonna get
cancer sometime but I didn't expect to get it at age 54. And so I was stunned
that it came then. And once I had seen that the treatment was so much better
now with the tubes and the catheters and all that and you didn't have to be
pricked every two seconds, I realized that there was great improvement.
Dr. Harpham: Now,
how much of your usual schedule, your usual activities, were you able to..
Mary: Well they kept me in the hospital the whole time that I was doing
chemo. They don't do that any more. And I spent 265 days in the hospital.
Dr. Harpham: What about when you were discharged and you went home? How..
Mary: I'd go home for four days and then I'd go back and start over again.
Dr. Harpham: But
when you completed your chemotherapy, how long did it take you to recover from
the chemo?
Mary: Well, the first time, sometimes, I had thirteen rounds of chemo.
I'd move my bed against the wall and play like I was in a college dormitory
and I just read books and wrote reports and did all these things that a normal
person would do.
Dr. Harpham: Even
while you were in the hospital?
Mary: Oh yeah. And I made my life list of birds. Now that's something nobody
ever has time to do.
Dr. Harpham: But you were cooped up so you could concentrate on it.
Mary: Well, yeah, and there was nothing else to do. And then sometimes
I was very, very sick. And when I was very, very sick, I stayed in bed.
But otherwise I got up every morning and took a shower and put on sweat
suits so I could walk around and so I wouldn't feel like a patient.
And I think that made a tremendous difference.
Dr. Harpham: How did you keep your spirits up when you were feeling rotten?
Mary: Oh, I just went to bed and went to sleep, so that there was no.
It was a one way or the other sort of thing. I didn't sit around too
often.
Dr. Harpham: Now
when you were done with your chemotherapy treatments, you were discharged,
you were on your way to getting better, tell us about the adjustment
after finishing treatment.
Mary: Well, I finished it in October and I guess everybody had their fingers
crossed it wouldn't come back, but it did. And it came back in April.
Dr. Harpham: And what was that like? Dealing with the recurrence?
Mary: We'll just double the dose and we'll give it
another try. Everybody was very positive and so we gave a double dose
and tried it. And then at the end they said, now we think we should
take your marrow out, because you have no matches. And this was just
the very beginning of the bone marrow, no not transplants, and I lived
in Seattle, where Fred Hutch was the pioneer, and Dr. Thomas won the
Nobel Prize two years later for the treatment. But they hadn't gotten
into the donor, the bank was very small. So they said I guess is the
new way to go. And so..
Dr. Harpham: So they used your own marrow.
Mary: Which I
found very satisfying. Because I didn't worry about what the person
had or did they ever have chickenpox or did they ever have a lot of
illnesses.
Dr. Harpham: Right. Plus when people get marrow from someone else there's always the
chance of graft vs. host.
Mary: Right and I see that after five and ten years reunion that men and
women are still fighting that ten years later. So I was..
Dr. Harpham: But on the other hand, they are still here. They survived their cancer,
to be dealing with it.
Mary: Mighty grand to be there.
Dr. Harpham: So
you had a smooth course during your transplant and your recovery. You
said you were hiking after..
Mary: I
was backpacking a month before I was diagnosed and I was back on the
trail in April, having had the transplant in December.
Dr. Harpham: How do you think going through that experience of a couple
of courses of cancer and ultimately the transplant changed you?
Mary:
Well, I went through terrible times thinking what am I supposed to do? I'm a
survivor. I must have been chosen to do something wonderful. And so I had a
long time trying to figure out what I was supposed to do, and then I met a woman
hiking one day, and she said, You know, we're all survivors, of something. Maybe
it was a car accident, or an alcoholic parent, or any number of things in our
life. And at the time we thought it was the most horrendous thing in the world,
but as time goes on, you become adjusted, and other things take up your life,
and you go forward. So I thought, well, okay, I don't have to write a book,
I don't have to do anything, but what I do do, is talk to cancer survivors or
patients.
Dr. Harpham: So
you use your experience to help others.
Mary: Yeah. And a positive attitude. And I hike all over Europe, I hike,
I travel a great deal and I have no problem as long as I stay away from
places that would have germs...
Dr. Harpham: So
cancer has definitely not slowed Mary down.
Mary: No, it hasn't. Unfortunately, (laughing) it encouraged me.....
Dr. Harpham: Well
I want to go back to Judy. Judy, Mary mentioned this idea of, Well,
I survived, I must have some special purpose on this planet. Did you
ever have any of that?
Judy: No.
Dr. Harpham: Did
you have any, tell me the feelings you had after you had cancer and
your husband had this very serious cancer. Did you ever deal with feelings
of Why me? Or? Can you share some of that and how you worked your way
through that?
Judy: There were a lot of questions of Why us? Simply because there were
other things that had occurred in our lives together that we had gone
through, and the way I concluded was not being terribly religious, that
we are all here for a period of time and some of us die sooner than
others. And
in my case, having a diagnosis of non-Hodgkin's lymphoma and it's showing
up in very strange places and at first having radiation and then having
surgery and radiation again, having survived, and Howard with dying
real quickly, I was meant to be here and he wasn't. And you know, that
hasn't, that's the way I interpret it. I don't see myself as having
any special role.
Dr. Harpham: Sometimes people, obviously these times have been very difficult,
there's no answer for you. Sometimes people who survive a difficult
time say the experience was bad but there were silver linings. When
you look back at what you went through with your own illness, or dealing
with your husband's lung cancer, were there any silver linings to the
difficulties, the hard times?
Judy: Yes there were. I think that silver lining was that we had done
a great job as parents. Our children are extremely close, whether we're
here or not, it's not going to destroy that; that we've produced very
caring human beings, and that we had been very fortunate in having had
not only a love affair, but a deep friendship.
And so those were things that perhaps we had taken
for granted, but with the shock of a very quick demise and an illness
that could, you know, that had a low survival rate, brought that to
the focus that would not have been.
So
I see that as the silver lining.
Dr. Harpham: That
is a silver lining. There's tremendous gratitude for what you do have
and the memories that you hold onto. Zora, can you share with us what
you see as some of the silver linings of going through non-Hodgkin's
lymphoma?
Zora:
Yes. Just as Judy said, there was some increase closeness that I felt with my
husband and my children. My husband was most supportive, in fact, for a year
and a half, I have to admit, he was the chief cook and bottle washer, because
I was told Stay Still. And for once I minded. And so far as the Poor Me thing,
course it's a shock, and everybody thinks, Well, I was just retiring, and there
were things to look forward to in retiring, and that's not one of the things
on your list. But then I thought, well, our four children are grown, they're
on their own, I've seen them happily in occupations that they're pleased with,
so, Why Not Me? And when I thought that the first time, it kind of hit me in
the face, and I thought, Well, you know, I really expect to survive this, but
if I don't, I don't.
Dr. Harpham: So you answered "Why Me?" with, "Why Not
me?"
Zora: I had had a very good life, I'm a retired teacher, and shared many
happy years with different children.
Dr. Harpham: So again, the silver lining for you would be this increase of closeness?
Zora: Yes.
Dr. Harpham: What
about the hard times? How did you get through the hard times?
Zora: Well, I
just tried to think positive, and the hardest part hardest time I ever
faced was I had been through chemo I had been through radiation, and
apparently things were not working like they should have.
And so we tried
a very severe treatment and I ended up pretty fast timing after the
treatment and ended up back in the hospital with a very, very low blood
count and everybody checking my blood pressure every fifteen minutes.
So I did survive
it though, when I saw my doctor and when do we start this next round,
his answer was, Well, that's up to you. We may not. And he explained
to me how bad, how serious things had been and exactly what I could
expect, and that if I went through with it, I'd just about decided to
do this, I would very likely not survive.
But you know,
I thought, well, if I don't do it, I'm not gonna survive, either, and
I thought it was well worth the risk, and I don't think I surprised
him or my family at all when I said, When do we schedule? And the second
treatment was wonderful!
Dr. Harpham: You just sailed through that. Now do you take any steps
now to help keep you healthy?
Zora:
Yes I do. Well, I try to do as much exercising and walking in the neighborhood
as I can. Recently I haven't been able to do so much of that due to numbness
in the leg which was brought on by all the treatments plus shingles, but I stay
very active and I do try to support other cancer patients. And I think maybe
in our talking together, and we've had some excellent programs on nutrition
in our dialog group, which keep you pretty alert.
Dr. Harpham: Well,
I know you're helping people by sharing on this show today. What about
diet? You mention nutrition. Do you do anything special with your diet
to stay healthy?
Zora: Both my husband and I do. We try to use low fat foods, lots of vegetables.
One thing I think has made a lot of difference, I cook only with Canola
oil at this point, which is what they tell me we should be doing. We
try to have a well balanced diet and without over exaggerating any one
food.
Dr. Harpham: A
well balanced diet. Judy, have you taken any special steps to try to stay healthy?
Judy: No. I used to smoke but I stopped smoking the
day Howard got diagnosed. So that. No. I keep saying that if I live
to be 75 I'll take it up again, of course I ....
Dr. Harpham: Did
you miss it?
Judy: Yes
I do. But I wouldn't do that to my children. So I don't smoke. But that's
all. And I must tell you that I have to be somewhere in fifteen minutes,
and I'm sorry but I'll have to go.
Dr. Harpham: Judy, I so appreciate that you stayed on as long as you did. I really did
enjoy meeting you.
Judy: Same here. Bye
bye.
Dr. Harpham: Barb,
are you still on?
Barb: Yes.
Dr. Harpham: I
was hoping you could share with us if you're taking any steps to try to stay
healthy.
Barb: I retired from a job that I absolutely loved before I was old enough
to officially retire, because I was a speech pathologist and my job
required me to work in children's mouths. This meant that s much as
I loved children, I was picking up every respiratory illness that they
had, and you know, much as we love them, they're germ carriers.
Dr. Harpham: Right.
So that was a tremendous sacrifice but it was intent to try to stay healthy.
Barb: Yeah. It was something, you know, my doctor looked at me and said,
What do you wanna do? And I said, I guess I don't have a choice. But
it REALLY was a wrench. And what I had done, is I turned having had
cancer into a whole new career. Because in 1995, I started on the Internet.
It really wasn't the net as we know it today, back then, but I was desperate
for information.
And I found
the old cancer list going back and within four months, found myself
running a brand new list, called the Hemonk list, for those people who
had hematological cancers, from Hemonk we created lists for each of
the leukemias, and today I run 30 cancer support lists.
Dr. Harpham: And I understand you have your own name.
Barb: I'm called Grannie Barb, and so I am known all over the Internet.
Dr. Harpham: Well,
tell us a little bit about how these lists work and why you think they're helpful.
Barb: They
are available to us 24 hours a day. If you are having the heebie-jeebies
at night and you're scared out of your mind, there is somebody online
who had been there, done that, and who can calm your fears and make
you see that there is hope. The tenor of our lists, because at this
point, our lists are on the Association of Cancer Online Resources,
is that we provide extremely accurate information. If there is a question
somebody will research it and get back to the person so they are sure
they are getting the best of what's out there...
Dr. Harpham: Well, how do people
find out about these lists? How do they get connected?
Barb: We're on
all of the search engines, and I get letters daily from people who have
simply gone searching through the search engines and who find my sites.
My entire story is online. I worked with one of the doctors at the National
Cancer Institute, and he uses my website and my story as a way of training
young doctors, because up until the advent of monoclonal antibodies,
I had been through all of the classic treatments for my disease. I'm
not quite so typical anymore.
Dr. Harpham: Well,
that's definitely another silver lining.
Barb: Yes. And then I was asked by O'Riley and Associates to write a book,
which will be out in either December or January of this year, December
of 2000 or January of 2001. "Adult Leukemia: A Comprehensive Guide
for Patients and Families".
Dr. Harpham: Excellent,
Well, congratulations.
Mary:
What is your Internet site?
Barb: Http://www.acor.org and from there you can get
to Grannie Barb's story, you can get to leukemia links, by adding a
slash leukemia, and you can get to the list.
Dr. Harpham: Well, one topic I'm sure you cover on these lists is late effects,
or long- term effects. And just to go over the definition, a late effect
is a change in your condition or a medical problem that first appears
months or years following completion of treatment, and it's due to either
the cancer that you had in the past or to the treatment that you had.
Zora, have you had any late effects or problems after completion of
treatment?
Zora:
Yes, I have, in fact I spent about 7 weeks this summer in physical therapy for
numbness in my leg, my right leg had been most affected by the Hodgkin's Disease,
lymphoma, rather. It had started in my right leg, in mean my first indications
were my right ankle, my right leg, which was swollen up to the hip. I didn't
realize it until one of my children, who is now PA, looked at my foot as I was
standing at the cabinet, and asked, What is wrong with your ankle? And I thought
I had turned it. She said, Mom, I think you'd better go see your doctor tomorrow.
Well, it was a misdiagnosis but this was in April. In September, we knew that
it was a misdiagnosis and I went immediately in the hospital. Going back was
polio before that and then with all the chemo and radiation plus at the end
of the radiation, I had shingles, which went right from my tailbone down my
right leg to my big toe.
Dr. Harpham: So
this right side has had a lot of... It's had the polio, it's had the
cancer, it's had the radiation and then the shingles. When did you first
develop this new problem, though.
Zora: It had been there more or less since the shingles but I ended up
with a dropped foot. Okay, I had begun to fall very easily, and I thought
I was watching, but I happened to find a very, very good specialist
I was referred to. The main problem is a lot of these people say there
is not enough research on post polio problems to really know for sure
that the treatment would work. It has worked to a certain point, I feel
more comfortable with moving around. The therapist I had told me a whole
lot about walking that I had never realized, showed me how to use a
cane correctly, and I do stop and think before I take many steps.
Dr. Harpham: Now,
I'm curious. You know when you go through cancer and then you survive
and you're doing well, there's a sense of celebration, a sense of victory.
What happens emotionally when you've survived the cancer but now you're
dealing with new problems that are related to the treatment that helped
you survive.
Zora: Well,
you know, it really doesn't bother me. It's just part of living and
I can get around and I can do everything I want to do. Soon after I
was diagnosed some of my dear friends thought I needed a hobby to keep
me busy. Well, I have enough hobbies, but that is beside the point,
and they got me involved in genealogy. Well, those who know, know that
genealogy is very, very addictive. I don't have time to worry about
me or the things that are going on.
Dr. Harpham: So you just take the things that come along, as well, that's the
next thing I need to deal with. I'll deal with it and live my life.
Zora: That's right.
And I plan to survive. And I think I've been very, very fortunate, and
I'm very grateful for this. Someone said earlier they were concerned
that this was something they would pass on to their children. Well,
that concerned me, too, and I was told immediately that they didn't
consider there was any problem, that I didn't need to worry. However,
I do worry about the possibility of breast cancer, since my mother,
we lost my mother to breast cancer and there've been several family
members, so we're all very, very careful about being sure we get our
mammograms.
Dr. Harpham: So when you know you have a risk, instead of its terrorizing you,
you just take steps to do what you can to decrease the risk and screen
well.
Zora: Yes. And as someone was saying, when they had a return of their
disease, well, sure, you're gonna get busy and do something about it. You're
not gonna sit and moan.
Dr. Harpham: Mary, I'd like to go to you. Have you had any problems since you've
completed all your treatments that you feel to be related to your treatment?
Mary:
No. I was considered cured at two years, and I took the doctor out to dinner.
At ten years, I took him out again and he retired! I'm gonna retire, too, from
this business. But I haven't, I've kept on doing various Operation Uplift groups
in Washington State and the Bone Marrow Transplant Newsletter comes out, I don't
know whether you're familiar with it?
Dr. Harpham: Oh yes.
Mary: But every once in a while there's somebody in there who says, I'm
contemplating having a bone marrow transplant but I'm 54, and has anybody
survived. And I had one and I picked up the phone and called the number
and she wasn't there and I left a message on her machine and I said
I'll be glad to talk to you. I'm
60 but I'm leaving for Europe to go hiking tomorrow at noon, so call
me back before noon. She called me back and said, I don't really need
to talk to you I'm so happy to hear that you can do that.
Dr. Harpham: Isn't
that wonderful? So you've been very fortunate. You went through a rough
time getting through your treatment but once you finished your treatment,
you've really had...
Mary: The only
thing I've had that's bad is my teeth, and they are breaking off, but
I always had lousy teeth and I don't think the total body radiation
helped any at all. But...
Dr. Harpham: Have
you been given any information or advice about your teeth?
Mary: No, I go to three different kinds of dentists, but they all seem
to say that no study has ever been done about how total body radiation
affects dental..um teeth. So I'm unfamiliar with that, but to me it's
a small price to pay.
Dr. Harpham: So
again, when you deal with the problem you kind of say, it's worth it.
Mary: Oh, yes. I mean, if that's all I get I feel terribly lucky when
I go back because there are so many bone marrow transplants and such
long, I'm one of the few that didn't have cataract problems.
Dr. Harpham: Cataracts
being a potential late effect after radiation.
Mary: Not even late, quite early, quite often. But again, there's research
on that, and it doesn't seem as prevalent now as it did at the five-year
reunion.
Dr. Harpham: Barb,
do you have any thoughts about these late effects?
Barb: I had to jump in on that one, I apologize.
Dr. Harpham: That's all right, I heard you biting at the bit.
Barb: I had several
late effects, but I was promised that there would be problems, and every
single problem that I was promised has come to pass. I've had cataract
surgery, I now wear implants and the only thing I need glasses for is
to read, which is a mixed blessing. The big problem has been teeth.
And they warned me that I might have dental problems, so I am ultra,
ultra careful with my teeth. I go to the dentist four times a year just
to make sure that we stay on top of any potential problem, but I've
had, up until that time I'd had no cavities, and suddenly I have dealt
with three or four. So I think that they have learned more since you
had your treatment, Mary, and the last time when the cataracts came,
I wrote to my doctor, because we e-mail back and forth, and I said to
him, Did you really have to be right about everything?
Mary:
I forgot about one thing. Those of us that were treated prior to 1990 were given
many blood transfusions, and the hepatitis C was not screened out, then. And
so I was, I decided since I had had multi, multi, multi transfusions, I should
have the test for it and I did test positive. But one of the things I went to
at the Fred Hutch reunion was a lecture by one of the doctors there in the research
department that said that so far as they have found 43% of the people who test
positive never have any effect. So therefore I plan to be in that 43% and so
far have had no problems.
Zora:
May I break in? Our papers have been full of these articles recently. I had
an appointment with my oncologist yesterday, and we had a discussion on this
because I had a transfusion in 1985 and another in 1986. We went right ahead
and did some more blood tests. And he explained many, many things to me and
he really left me feeling like, okay, if we find something, we'll just deal
with it. But I couldn't see sitting around just doing nothing when so much was
being said about it.
Mary:
Yes, well that was what prompted me, when I saw it in the newspaper so I thought
well I certainly am learning.
Dr. Harpham: Barb,
I'm gonna cut back to you for a second. We know you're kind of an information
junkie, you like to get information and use it and I think that's terrific.
But when you found out and you started dealing with the dental problems
yourself, how was it emotionally, to survive the cancer and be doing
well but now have a new problem because of the treatment.
Barb: Well, honestly, I can deal with the dental problems
better than I can with the irritable bowel syndrome. That's the one
that is getting to me.
Dr. Harpham: Tell us a little bit about that, Barb.
Barb: I used to be able to eat absolutely anything I chose, and now
I find that I can't have the salads that I love, because of what they do to
me. You don't want to be around me after I've had certain foods, and because
I'm speaking all over the country, I'm learning to be very careful about what
I eat before I talk, when I'm around people. It poses some really interesting
problems for me, and I walk around with some pills that I've gotten from my
gastroenterologist so I'm sure I will be in the best possible shape, but I also
have to be VERY, very careful.
Dr. Harpham: So you've had to do a lot of adjustment. You have to work
around it. Emotionally, is that is there a sense of well, you know I think Mary
said whatever I have to deal with, it's worth it. Um, other people I can see
saying, Hey, this is like REALLY not fair, I dealt with cancer, I dealt with
treatment, I can't believe I'm having to deal with new problems related to surviving.
Barb: I look at it by saying that I may moan and groan
about what's happening, because after all, the Golden Years do have
a few pits. But at the same time, I'm here. I'm here, to live this day,
to enjoy this day, to have this day to celebrate life. And believe me,
I do. So I can't be bothered. I worry about things that happen when
they happen. I'll be darned if I'm gonna waste time worrying about something
that hasn't happened yet and I've been pretty successful with that.
I send everybody to a page on the web that has an article called "The
Medium isn't the Message", and it's driving me crazy that I can't,
I'm having a senior moment, I cannot remember who wrote it.
Dr. Harpham: But
they can go to your site and find it.
Barb: You can go to Steve Dunn's Cancer Guide, www.cancerguide.org, and
that will take you to Ed Upman, I think, no that's wrong. Anyway,
Dr. Harpham: They can e-mail
you. Zora, any last thoughts?
Zora:
Well, I've received so much from listening to these other ladies, and I think
in so many ways we all feel the same way. We don't have time to worry about
what's going to happen, there's enough to take care of today and to enjoy. And
it's about helping others, others who may be facing cancer, or treatment, but
being a friend to the new neighbor, and doing what I can in my community to
make things a little bit better for other people.
Dr Harpham: Mary?
Mary:
I guess I agree with both of them. I am just a jubilant person and I try to
be happy and positive in everything I do. In fact, well, that's about all I
can say.
Dr. Harpham: Honestly,
our guests today have truly inspired me. I hope our discussion has helped
you sort through some of the issues that may be part of your life. A
big thanks to Judy, Barb, Mary and Zora, for their willingness to share
their stories with us today. I hope that some of their experiences will
help you think about and talk about your own concerns in healing ways.
I encourage you to listen to other discussions we have available on
the website or by phone. For the American Cancer Society's Cancer Survivors
Network, I'm Dr. Wendy Harpham, wishing you a good day, today and every
day.
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(2 minutes 56 seconds)
