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Darcy
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Nancy
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Carrie
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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'll be talking with three women from
across the country, all in their forties, who are all lymphoma survivors, and
have completed their cancer treatment. Although all three of them have been
in remission for a long time, they all have had to face medical problems related
to their treatment. I believe you will find their stories useful, not only because
they will share some insight about dealing with post- treatment medical problems,
but because you will see that everything doesn't have to be perfect, to have
a fulfilling and joyful life. These women have not only survived their cancers,
but have found how to make their lives, in certain ways, richer, because of
their cancer experiences. As a doctor of internal medicine, who is also in my
forties, and is also a ten-year lymphoma survivor, I'm ready to have a great
conversation.
First, let me introduce our three guests, and
then I'll open it up to discussion, as we talk
about issues such as, dealing with chronic after-
effects and complications of treatment; early
menopause as a result of treatment; exploring
personal creativity for growth as a way to process
your cancer experience; journaling through cancer;
finding a healing attitude; hopeful acceptance as
a reality-based guide for living; reorganizing
your life after cancer.
Our first guest is Nancy, from Texas. She's 47
years old, single, and a survivor of Non-Hodgkin's
lymphoma. In the later part of 1992, she was
feeling tired, and developed night sweats. At
Thanksgiving, she ate a big meal and experienced
severe pain afterwards. Her primary care physician
treated her for esophageal reflux for one week,
and she had no relief. Reexamination revealed an
enlarged spleen. NANCY was referred to an
oncologist, who did a CAT scan and bone marrow
biopsy, with no clear diagnosis. She was then
referred to a lymphoma specialist, who made a
diagnosis of Stage 4 Non-Hodgkin's lymphoma. She
was placed on a very aggressive chemotherapy
regimen which cleared the cancer from her spleen
and lymph nodes, but not her bone marrow. After
that, she had two medical complications, having to
do with the immune symptoms: one, lupus
anticoagulant factor; and two, angioedema. Her
physicians prescribed another round of a different
chemotherapy, but the lymphoma still did not clear
from her bone marrow. Her brother typed as a match
for a bone marrow transplant, so, after high dose
chemotherapy and total nodal radiation, her marrow
was rescued with her brother's, and she recovered.
The transplant was successful in putting her
lymphoma into a remission that has lasted till the
present.
Unfortunately, her remission was achieved at a
great cost. Nancy developed post transplant
complication, including chronic graft versus host,
GVH, in which her feet and ankles became woody and
lumpy. This hardness represented an immune
reaction of her brother's graft to her own skin,
and the reaction progressed up her legs and torso.
Nancy also developed fibromyalgia and aching and
tenderness of her muscles. Over the years, she's
gone through a number of therapies to try to
control all of these side effects and after
effects. Despite her efforts to keep working,
Nancy has been on disability since 1997. We will
talk with Nancy about dealing with post treatment
complication, a lifestyle that has been
drastically changed by a successful transplant,
and of how she now finds meaning and happiness in
her life. Thanks for joining today's show,
Nancy.
NANCY:
Thanks, I'm glad to be here.
 DR.
HARPHAM:
Our next guest, Darcy, is a 44-year-old single artist from New York. In 1991,
Darcy was having shortness of breath and trouble walking uphill. These symptoms
were associated with depression. She went to a doctor several times before he
finally took an x-ray and found her lungs full of fluid. With a CAT scan, he
determined it was lymphoma. However, tests were inconclusive as to the specific
type. She underwent surgery to drain the fluid around the lining of her heart,
lungs, and esophagus. Her oncologist felt that they needed to proceed with treatment,
even though they didn't yet have a definite diagnosis, because her life was
at stake. Based on the best information available, they treated her for Non-Hodgkin's
lymphoma, with chemotherapy, and radiation. Darcy has been in remission ever
since, but has had ongoing medical problems due to her masses of scar tissue
in her lung, causing both chronic pain and fatigue. Thanks for being here, Darcy.
DARCY:
Thanks for having me, Wendy.
DR. HARPHAM:
Also joining us is Carrie, from Minnesota. Carrie
is 43 years old, married, and a two-time survivor
of Hodgkin's lymphoma. In 1987, she developed
itching, and, like so many lymphoma patients who
have had this symptom, didn't see a doctor until
it prevented her from sleeping through the night.
Her family doctor sent her to a dermatologist, who
gave her histamine tablets. In the fall of 1988,
she noticed a lump on her neck, went to her
doctor, who took a chest x-ray, found nothing, and
kept her on the antihistamine. But the itching
continued to get worse. It was her dentist who
noticed her enlarged lymph nodes, and sent her to
an ear nose and throat specialist, who took a
biopsy and made the lymphoma diagnosis. So, in
1989, she had nine months of chemotherapy, which
put her lymphoma into remission. A few months
later she developed recurrent symptoms and called
her doctor. Recurrent lymphoma was seen on a CAT
scan. Carrie was then treated with another nine
months of chemotherapy, which again put the cancer
into remission. In 1991, another CAT scan
suggested another recurrence, but it turned out to
be a false alarm. Carrie has been in remission
ever since, and will share with us how she dealt
with chemotherapy-induced menopause, limitations
in her activities due to arthritis, which
developed about six years ago, in addition to
sharing how she had grown in her personal life due
to her health challenges. Carrie, we're really
looking forward to hearing your insights, and
welcome to the show.
CARRIE:
Thank you. It's my pleasure to join you.
DR. HARPHAM:
These women have really been through a lot, and
coming from similar experiences and being in the
same age group, I can really relate to them. Let's
begin our discussion by talking about dealing with
chronic aftereffects and complications of
treatment. An after effect is a medical change or
problem that first appears months or years
following completion of treatment, and is due to
the cancer, or the treatment. Nancy, even though
you've been in remission since your transplant,
this success did not enable you to escape the
patient role. Can you share with us what it's like
to develop medical problems after a successful
bone marrow transplant?
NANCY:
Well, initially, as different things began to
develop, it seemed like one thing after another.
And, thinking that I was on the road to full
recovery and my former lifestyle and everything,
each one brought its own set of difficulties and
adjustments.
DR. HARPHAM:
You know when you go into the bone marrow
transplant, you expect it to be grueling, you
expect to have a hard time, but then you expect to
get better.
NANCY:
Right. I actually had one of the easiest times in
my transplant because I didn't develop any
infections or fevers. My doctors told me that my
case was actually boring.
DR. HARPHAM:
Which is exactly what you want to be when you're a
patient. You want to be a boring patient! So there
you are, you sailed through your transplant, you
think, ah, I'm in a good place. Then how did you
know you were running into problems or things
weren't going to go as expected, and how did that
make you feel?
NANCY:
Well, I had several what I call little things. I
had a bad case of shingles and then I had
radiation-induced pneumonitis, and a lot of side
effects came with high-dose steroids, and you know
really changed a lot of things. I tried to go back
to work. It was really just about six months after
my transplant and it just seemed like one thing
after another was happening.
DR. HARPHAM:
And then again, what did you think about that? I
mean, did you think this was all just post
treatment, you'd get a handle on it, or were you
worried about things not getting better?
NANCY:
Well, it seemed that initially, as soon as I went
on the high-does steroids, things, you know, with
the shingles, I was able to start a medication
that shortened the length of it. It seemed like
there was always something that came up that could
help me deal with it. But when I developed the
graft vs. host disease, a year or so after I
showed signs of that, I developed a kind called
sclerodermatous.
DR. HARPHAM:
And that's that woody, hard induration of your
skin.
NANCY:
Yes, and it deposits some kind of collagen or something and then it just hardened,
and it just went up my legs and down my arms, and now I have a lot of scar tissue.
People ask me if I was in a fire. You know, very discolored...
DR. HARPHAM:
So where did you go for information as you
developed these symptoms and needed treatment for
these new medical problems?
NANCY:
Well, being a medical librarian formerly, I knew a
lot of medical sources to consult, and that helped
me a great deal. I had an excellent transplant
doctor, but this sclerodermatous presentation was
unusual. And, my co-worker in the library had
found an abstract about someone in Seattle, a
researcher in Seattle, who had witnessed this kind
of presentation of the GVH twenty years ago, and I
was able to get an appointment with her and that
helped a whole lot.
DR. HARPHAM:
So, connecting with someone experiencing similar
symptoms helped.
Now, Nancy, how informed were you about post
transplant complications, such as Graft vs. Host
disease, before your transplant?
NANCY:
Well, I was very well informed. I did develop
cataracts and had them removed, I just never
expected the GVH to be so severe, and to last so
long. They wanted of course to see some GVH
effects, so that meant that any cancer recurred it
would get rid of that.
DR. HARPHAM:
Be of benefit. So graft vs. host disease is not
totally bad. It has some anti-cancer effect.
NANCY:
Absolutely.
DR. HARPHAM:
But in your case, not only did it do that, it was
changing your life.
NANCY:
Right. And in my case, I was in a clinical trial,
like the third one in Texas that did the kind I
did. And they found out later, when I did it, they
wanted to make sure the cells grafted in, in a
timely manner. So they gave twice as much of my
brother's stem cells to me as they have done
later, and they found out that is linked to
chronic GVH disease.
DR. HARPHAM:
How do you feel about that? The fact that something that was tried on you turned
out to be not such a good thing. What part of it? Obviously, so far it appears
to have cured your lymphoma.
NANCY:
Right, uh huh, that's always a big part of my
thankfulness, that you know I was able to do that.
The others, it seemed like the sclerodermatous
with GVH we were discovering, and what had
happened when I found out they were giving less
stem cells having less problems, I feel torn. Part
of me has felt that it was a real privilege to be
able to contribute to the knowledge, you know, I
was kind of a guinea pig, in a lot of
different...
DR. HARPHAM:
Well, I like to use the word "pioneer".
NANCY:
(laughing) I like that. Okay I was a pioneer, and
you know, as you mentioned when you introduced me,
I did try to work, I did try to resume normal
activities. But it just, things just seemed to
progress to where I had to take a final leave of
absence and with the painful fibromyalgia, they
had gotten the sclerodermatous part of the
progression of the GVHD under control, but I had a
hard time planning things because I was so
tired.
DR. HARPHAM:
Right, we talked about that fatigue factor and
we're gonna come back to that later.
NANCY:
Un huh. It just seemed like one thing after
another, like I said, my cataracts hit.
DR. HARPHAM:
How did you keep your momentum going? How did you
keep your spirits up if it just seemed like every
time one thing started to get better, you were hit
with another problem?
NANCY:
Well, of course, the support group and other
people. One friend, Sandy, who went through a
transplant at around the same time I did, she had
a great sense of humor, and her husband, Carl, and
we could just laugh, we found so many things to
laugh at. You try, trying to interject a sense of
humor in there, and then, of course, my faith in
God was big factor, and then, you know, my friends
and family...
DR. HARPHAM:
So just lots of support.
NANCY:
Yes, yes.
DR. HARPHAM:
Well before I move on to Darcy, I really want to
focus with you on what were the advantages and
disadvantages of knowing about these possible
medical problems before you had the transplant. Do
you feel like you knew enough? Do you wish you'd
known more? Do you wish you knew less?
NANCY:
No, actually, I was in a state of denial,
thinking, Oh, well, none of that is gonna happen
to me. But I was glad that I knew of the
possibilities of all the different things that
could happen.
DR. HARPHAM:
Why?
NANCY:
Well, so that I could be somewhat
prepared, although some of the things snuck up on
me and then some of them were totally different
from what they thought. But like I said, I thought
none of that was gonna happen to me, I was just
gonna bounce back, because I did so well...
DR. HARPHAM:
And because you were so young and healthy.
NANCY:
Right, yes, un huh.
DR. HARPHAM:
Well, Darcy, you've been in remission for a lot of
years now too. Yet this success has not enabled
you to escape the patient role, either. Can you
share with us what it was like to develop medical
problems after successful treatment for a life-
threatening disease?
DARCY:
Well, initially I was told that my fatigue and the pain I suffered from internal
scar tissue, you know, things would go away. And after awhile the chemo treatment
and everything would wear off, and after about five years I started to get,
like, a little suspicious to say, wait a minute here!
DR. HARPHAM:
Five years sounds pretty patient to me.
DARCY:
Yeah, it's kind of my personality. Which isn't
always so good. I often wish I'd spoken up a lot
more at the time, and I didn't. And it wasn't
until I really started exploring what was causing
my fatigues, what was causing the pain, mostly
with my internist, and realizing that it was there
to stay.. .
DR. HARPHAM:
What did you learn about the cause of your
pain?
DARCY:
The cause? That whatever kind of stress, if I got
a cold or something, it would cause the internal
tissue to tighten, the scarring. And that would
cause my breathing to be uncomfortable, I would
get very fatigued. And after awhile it would just
get more and release. And then I'd feel a little
better and be okay for awhile, and then the whole
thing would seem to start over again.
DR. HARPHAM:
Now, Darcy, who did you go to for information
about these unusual symptoms. Who actually worked
with you to sort through the cause of your
symptoms and how to address them?
DARCY:
Only my internist. And, it was between him and me
that we tried to figure out how to address them. I
haven't had any other help from my actual
doctors.
DR. HARPHAM:
Meaning your oncologist?
DARCY:
Yeah, my oncologist did not help.
DR. HARPHAM:
Did you try to work through these problems with
your oncologist?
DARCY:
Yeah, but I found he was not very helpful in
dealing with the conditions that happen after the
treatments. You know, to him it was "oh it was
just you, that's what happened to YOU."
DR. HARPHAM:
How did that make you feel?
DARCY:
Terrible. I felt really uncomfortable. I felt
like, first I thought it was just me. Except that
my internist, who's always been very supportive,
continued to listen to me and talk with me about
it, and basically just, well, we could open you up
and scrape all that scar tissue out, but it would
just grow back in again.
DR. HARPHAM:
Now, you mentioned a little bit ago that you
didn't speak up very early. Do you think that
affected your situation in any way?
DARCY:
Um. Definitely, before I was diagnosed. When I was going through depression
and everything, and after the whole illness, treatment, I think I was more assertive,
but I think I was just sort of overwhelmed by the experience.
DR. HARPHAM:
You mean by how sick you got and how much
treatment you needed?
DARCY:
How sick I got and what a miracle that I lived and
how different I felt. I felt like my life really
changed around better so I was sort of celebrating
and figuring, well, if I feel fatigue and pain,
that's okay, it's not the cancer returning, it's
just...
DR. HARPHAM:
So because you were so grateful to survive a life
threatening disease, you minimized real symptoms,
that weren't life-threatening.
DARCY:
Right.
DR. HARPHAM:
And how do you feel about that now?
DARCY:
Well, I'm trying to teach myself to be more
selfish about my energy and my time and I'm
feeling like, I guess, I, I, wish I had done
something before, but nothing progressed, nothing
got really worse, so..
DR. HARPHAM:
It's just that you had to deal with it longer than
you might have? Or you could, you might have
started adjusting to it sooner had you actually
talked about these things?
DARCY:
Exactly.
DR. HARPHAM:
How well informed do you feel you were about post
treatment problems when you went into treatment? I
know your treatment was kind of emergency.
DARCY:
Well, some things I didn't really inquire about.
Perhaps I was afraid about the early menopause,
which did happen to me.
DR. HARPHAM:
And we're gonna come back to that, don't
worry.
DARCY:
Okay. And I didn't understand about scar tissue, I
didn't understand a lot of what, that I might
always feel tired afterwards. I don't think they
knew what to expect, either.
DR. HARPHAM:
So it was not just that they were keeping stuff
from you, maybe they didn't know?
DARCY:
I think so. I think they just felt that every
patient's gonna be different and they won't know
what's gonna happen down the road.
DR. HARPHAM:
Well, in your mind, what do you think are the
advantages and disadvantages of knowing about
these possible problems ahead of time?
DARCY:
Well, I think if the advantage if I'd known
particularly about the fatigue and stress, I think
there would have been things I'd have done more
differently in terms of how I lived my life.
DR. HARPHAM:
You mean after your treatment. Do you think it
would have changed what you would have done
treatment-wise?
DARCY:
No. I think, I just knew I had these really good
doctors, they were treating me, they were doing
what they had to, and you know, that's the way it
is in life. Things happen, you have to act
quickly, they acted quickly, I survived. And
because emotionally my life feels better, you
know, that's okay.
DR. HARPHAM:
What you kind of described for us is your life was
seriously threatened, your doctors acted to save
your life with this treatment. And then you
developed problems after treatment, but you were
so elated about surviving the disease, that you
accepted a lot of the symptoms and problems after
treatment. And then there came a point that you
said, "Well, maybe this was not so good and maybe
I really need to try to do something about that."
You know what I'm talking about? (Darcy says
yeah.) Can you describe for us when you shifted
from the elation and you can handle anything
because you're just so glad to be alive, to
realizing that maybe you need to do something
about this? Because I think that's important for
other people, that transition.
DARCY:
Well, it was after about five years, when I was told, okay, you're clean, your
cancer hasn't come back, and I started asking questions about my cancer and
finding out more because I was afraid to, initially. So I started learning more
about what happened and I started to go back to working more hours, initially
just doing small part time jobs. And I started putting in more hours and I found
I was tired and going through these cycles and being more aware of what was
happening to my body, and I thought, this isn't fair, I can't seem to keep up
with the "normal life" that everyone has. And I started to rethink about what
could I do, how could I change it? And for a long time I was still stuck, you
know, I had to work, I was getting some social security help but then that was
taken from me, so it just made the pressure worse...
DR. HARPHAM:
So you feel pressure, did you ever feel angry or
lonely or alienated or any other negative feelings
related to having these symptoms?
DARCY:
Yes, very often I felt like I couldn't keep up
with the rest of the world...
DR. HARPHAM:
And did you expect yourself to?
DARCY:
Yeah. Part of me did. Because people were like,
look at me, "you've recovered, you look good,
you're having a normal life, you work, you do
this, you do that, you paint, you're doing your
thing, so what's the problem?"
DR. HARPHAM:
How much do you think the fact that you were in
remission played into your and others'
expectation?
DARCY:
I'm not sure I understand.
DR. HARPHAM:
Meaning the fact that you didn't have cancer any
more, you were in remission.
How do you think that played into your expecting
to get back to normal, or other people expecting
you to be back to normal?
DARCY:
A lot. A lot. Because anyone who was real close to
me, a family member, would be afraid of what kind
of problems, health problems I might have. So that
would make them uncomfortable. "Well, it's not
cancer, is it?" So, that made me feel all the more
that I had to keep up and be out there and put on
a good face, be a good trooper.
DR. HARPHAM:
Interesting. Because I know a lot of survivors
who've been through treatment, and they get into
remission, they deal with, "Well you don't have
cancer. So, what's the problem?" they see it
either you have cancer and you're sick or you're
in remission and you're not sick anymore. It's
black and white dichotomy.
DARCY:
Yeah, like, they don't want to hear anymore.
DR. HARPHAM:
Well that's another issue. They've already been
through it with you, with the cancer and the
treatment, isn't it over? So you dealt with some
of that? (Darcy says yes).
Well, let's go to Carrie. What about you? Can
you share with us what it was like to develop
medical problems after successful treatment?
CARRIE:
You know, it was such a, I think I'd learned
through the cancer experience about being
assertive with medical care, but throughout my
life I'd been so healthy that I never experienced,
you go to the doctor, you fix it, you're done. And
so even through my cancer treatment, it was, "oh,
you know, this is different. This is not, oh
you're sick we're just gonna take care of it."
This was a serious, life-threatening illness. The
treatments we are giving you may cause some long
term effects.
DR. HARPHAM:
You were told that upfront?
CARRIE:
Yeah. And especially, like the first time I was on
chemo, I heard that, but my sense was this is
gonna go away, yeah I have to put up with it, but
I'll be fine afterwards. Then through the second
time I really got it, that, you know, this may not
go away. And the treatment may have long-term
consequences for your health, and what's the
option? Do you die? Or do you put up with some of
these consequences? And so I think that that
helped prepare me for some of the physical medical
kinds of things that followed, although it
certainly doesn't take away the pain of it, or the
frustration, or wanting that to go away.
DR. HARPHAM:
But you kept in your mind the links to the option
of not getting treated and suffering from the
original cancer?
CARRIE:
Right. And you know, that itching. I would pay a
lot of something not to have that kind of
uncontrolled itching? Even like having chemo and
throwing up and stuff, was a relief.
DR. HARPHAM:
Where did you go for information about your post
treatment symptoms?
CARRIE:
Well, actually the National Coalition for Cancer
Survivorship. I was really fortunate to about
probably about a year after my last treatment, to
go to one of their conferences so I met all of
these people from around the country, who were
talking about the things they were doing, talking
about being good advocates. I learned so much. And
it was such an affirming experience, that I'm not
the only one having it, that there are people who
are doing even more and all of these wonderful
resources that were just so helpful.
DR. HARPHAM:
In your mind, what are the advantages and
disadvantages to you of knowing about medical
problems ahead of time?
CARRIE:
Well, I think the advantage is you can be somewhat
prepared and maybe start planning for some of the
options. The disadvantage is I think it could be
just overwhelming. I read, before I knew what kind
of chemo I was on, I got the book. I'd been an
informed consumer, I started reading all the
different side effects for all the different
chemos. I just about went, Oh, no, wait a second,
I've got to stop and not deal with all of these.
I'm not gonna read this until I know which one I'm
gonna be one. So it can be difficult I think to
sort through all the potential, and like Nancy was
talking about, you kind of want to deny that it's
ever gonna happen to you. But I think it helps you
in terms of preparing a plan, being alert to the
symptoms, and even being able to...
DR. HARPHAM:
And tell me why that's so important?
CARRIE:
Then you can start identifying, "Oh, this is what
this is, and I need to get medical attention for
this," or, "this is what this is, and this is a
possible way to cope with it."
DR. HARPHAM:
So it gave you some control and it actually helped
you change the outcome of certain things, because
you would recognize symptoms or signs and then
report to your doctor and work with your doctor if
there was something you could do.
CARRIE:
Right. And not to just have to grin and bear it,
because you were feeling there are things that
could be managed. So if this one doesn't work,
then there's something else that might be able to
work, and even if it doesn't take it totally away,
there might be something that can allow you to
live at the higher quality of life.
DR. HARPHAM:
Absolutely. Now tell us a little bit about your
joint problem.
CARRIE:
Well, I have rheumatoid arthritis, and this just
showed up one day in my hands and wrists and feet
and ankles and knees, just all kind of puffed up.
And it didn't hurt initially, and I went to a
doctor right away, and we had to go through a
number of different anti inflammatory things. He
then actually referred me to a rheumatologist, who
immediately said this is rheumatoid arthritis, and
really was able to manage the symptoms very
quickly, so that I, I used to do karate, and I'm
not able to do that anymore. So that's a loss but
as a result I was able to start riding horses,
which is a wonderful thing for me. So, it's like,
with any loss, my gift from my arthritis is
horses. My loss from that is karate.
DR. HARPHAM:
Now is the rheumatoid arthritis related to your
treatment for cancer?
CARRIE:
You know, it's hard to tell. I think that's one of
the most difficult things. I don't know if it's
because I had Hodgkin's which is a cancer of the
immune system, so is that, is my arthritis then
related to the cancer or the treatment or is that
just another example of something that
happens?
DR. HARPHAM:
Is it important for you to know?
CARRIE:
No. Because it doesn't really change the outcome.
Like, what came first? I don't know, but what I
know is this is what I have to deal with.
DR. HARPHAM:
Well, you know, you were so young when you first
started developing serious medical problems, and
life altering medical problems. What helped you
to adjust to going from somebody who's always
healthy and expected that if anything developed,
you'd just get better and that would be it, to
realizing that things could be lifelong and things
could change your life?
CARRIE:
You know, I always think about options. And that there, okay, this option may
not be available to me anymore, then what option is available? And, looking
at different options, even when you can't control everything, then looking for
what are the things you CAN control, and what are the things you can deal with?
And that helped through all my chemo things too...
DR. HARPHAM:
Were you like that before your cancer, or did you
kind of find that through your cancer?
CARRIE:
Well, I have always been accused of being an
optimist, and I think that that actually was
really challenged through my cancer experience,
and I think that continues to be challenged, it's
easier to be an optimist when nothings' going
wrong.
DR. HARPHAM:
Absolutely! That is such an important point,
Carrie. It's easier to be happy and optimistic
when you feel good! And when things are going
well. But, that's what Job was all about.
CARRIE:
Yeah. I was always an optimist, now I'm a working
optimist! That you really, you can't just lay down
and take it, that you need to be an active
participant in your life, and keep looking for
options. And I think sometimes that means you
really feel beat up and you don't feel very
hopeful, and then you just sort through it and go
ahead and cry and feel bad, and then to me it's
like, "okay, I cried. Now I got that over with,
now what am I gonna do about this."
DR. HARPHAM:
And I want you to hold on to that because I'm
gonna come back to that with everybody when we
talk about attitude. But, sticking with the
medical aftereffects, now, on of the aftereffects
of treatment is premature menopause, where the
ovaries stop functioning and women become
subfertile or infertile, they may stop having
menstrual periods, all three of our guests have
experienced this, and I have, too. Carrie, can
you share with us what it was like, and how your
premature menopause was diagnosed and treated?
CARRIE:
The first time I was on chemo, my doctor had
talked to me about possibly going into menopause,
but that didn't happen the first time.
DR. HARPHAM:
And how old were you the first time?
CARRIE:
Thirty-one.
DR. HARPHAM:
So, very young.
CARRIE:
And we were thinking we'd probably have children
after I was done with chemo, like give it a year
or so, and then have children. And then when my
second chemo came so quickly again, then I went
into menopause, and we were just so worn out,
then, so really one of the consequences was not
having children. And we looked into adoption and
that kind of thing, but it really was one of the
consequences of my treatment. Then, so we knew
this on my second time on chemo, but we were so
focused on life, you know, keeping alive, and that
kind of thing, that I started with a gynecologist
right after the end of my second time on chemo, so
that I would again try to manage symptoms before
they would cause problems.
DR. HARPHAM:
Darcy, what about you and menopause?
DARCY:
I went into menopause about two years ago at 42, and I wasn't treated. I was
like an ongoing thing. My internist was monitoring it. My periods were really
strange after treatment, I got a whole bunch of them and there was a possibility
it would be okay, and we just kept monitoring it and then they just stopped.
DR. HARPHAM:
Did you have any other symptoms besides stopping
menstrual periods?
DARCY:
In terms of menopause?
DR. HARPHAM:
Night sweats, vaginal dryness, memory changes,
mood changes.
DARCY:
Yeah. I had night sweats, I had chills very
lightly, I had, nothing really strong. I had
symptoms, and most of the time I felt it was me
worrying about going into menopause, I was so
upset at the time. I really had a dream of wanting
to have children, I came from a big family and I
always thought I was gonna have a kid. Of course I
hadn't known anybody and I wasn't married, so it
wasn't like that was a possibility. But it was a
dream, and I finally learned to let go of the
dream. And the funny thing is that then I met
something I wanted to get married to. And now it's
kind of upsetting to know I've met the man of my
dreams and I can't have a kid with him. So, it was
kind of funny in that way.
DR. HARPHAM:
Or hard.
DARCY:
Yeah, well hard, but, you know, that was life.
DR. HARPHAM:
Ironic.
DARCY:
Ironic. It was ironic, but it was okay because you
know I'm going to be 45 and that's kind of old to
have a kid, etc. etc.
DR. HARPHAM:
Now, with your menopausal symptoms, did you ever
worry that they were cancer symptoms?
DARCY:
No.
DR. HARPHAM:
Okay, so you were pretty sure of what was going
on?
DARCY:
Yeah. Also because my doctor kept monitoring me,
taking my blood counts.
DR. HARPHAM:
So you got right on top of it.
DARCY:
Yeah.
DR. HARPHAM:
What about you, Nancy?
NANCY:
I went into menopause, chemo-induced
menopause.
DR. HARPHAM:
And how old were you?
NANCY:
Forty. It was right after that first aggressive
chemotherapy, and I had terrible hot flashes, like
every hour, and I was also coming off
steroids...
DR. HARPHAM:
Which complicated the picture.
NANCY:
Yes. And my oncologist was hesitant at first for
me to go on to hormones because she wanted to make
sure my periods weren't gonna come back. But
actually I look at that as one of the benefits of
going into chemo-induced menopause, was not having
to have periods, ever again. I had had really bad
PMS, cramps, but I did grieve, you know that I
would not be able to have children. Of course, I
have never been married, and so it hasn't really
been an option for me because I wouldn't have had
children had I not been married, but..
DR. HARPHAM:
But you were also spending some of your young
dating years doing cancer.
NANCY:
Right. There was a real learning experience, how
different people reacted to my condition, and
still are.
DR. HARPHAM:
In terms of what, Nancy?
NANCY:
Well, with dating. The way different men react
when they find out what all I'd been through and
was going through.
DR. HARPHAM:
As you dealt with all these medical problems, one
after another. Now, were your menopausal symptoms
controlled?
NANCY:
Oh yes, yes. Ever since I went on the hormones. I
finally talked my doctor into letting me go on
them.
DR. HARPHAM:
Why did you have to talk your doctor into it?
NANCY:
Well, because, you know, they still wanted to wait
a little bit longer to see if I was gonna start up
again, but I was just so miserable, you know, and
I really didn't want to start up again, in the
sense of dealing with still having the cancer, and
you know, having all these other things going on,
too. Well, then I started having abnormal pap
smears, pretty routinely, and then the scleroderma
had gotten in to that area, and I was not able to
have checkups any more. The doctor couldn't see my
cervix or get in there.
DR. HARPHAM:
Right. Cause it all got tightened up by the
scleroderma from the graft vs host disease.
NANCY:
Uh huh. So I ended up having a hysterectomy, and
you know, I have felt kind of different, sort of
feel it really affected my outlook toward my
femininity and everything.
DR. HARPHAM:
The hysterectomy?
NANCY:
That and you know, the menopause, and the just
being, having so many chronic or different
occurrences of things...
DR. HARPHAM:
So, how did you deal with that?
NANCY: Well, I just, I used to be sort of dependent upon male attention,
but I've learned to find other ways to feel feminine, like, I let my hair grow,
and I wear clothes that make me feel feminine, and things like that. Color my
hair. Although I don't use, my doctor didn't want me to use regular hair dye.
Dr. HARPHAM:
Right, like dark hair dyes. That's been a controversial area about the association
of dark hair dyes with Non-Hodgkin's lymphoma. Before we leave the medical topic,
I'd like to throw out a question for all three of you. And that is, as you age,
as things happen, how much do you wonder if these new problems are related to
your cancer, your treatment, or if they're just kind of normal, age-related
problems? Carrie?
CARRIE:
One of the things, one of the more recent things
that I've been having medically, is an allergy to
perfume, which is just getting worse and worse.
The more I'm exposed, the worse it gets. And that
one I really wonder about, whether, if that's a
side effect of the chemo?
And I actually kind of just assume that it is.
And then again work on controlling it and seeing
what I can do to cope with it. The other thing is
I expect that I'm probably going to have, like I
feel older, physically, than my age. And I just
expected that will happen, so I figured I'd better
keep working on this, or because by the time I'm
eighty, I still want to be able to do things.
DR. HARPHAM:
So, has the sense of your body being older than
your chronological years, changed any measures
you're taking, in terms of preventive measures,
exercise, diet, sleep, skin care, anything you're
doing?
CARRIE:
I talk to people who are much older than me about
the same things. So I tend to go to them, for "Oh,
and what are you kind of doing?", as opposed to
people my own age, because they're not having the
same kind of thing, they haven't gone through the
same things, so I talk to people who are post
menopausal about skin care and that kind of thing.
I try to really eat healthy and that doesn't mean
avoid all chocolate, but it does mean really
working on fruits and vegetables and doing a
consistent exercise. So while I don't know that
I'm ever going to be at my previous fitness level,
my goal now is fitness, not thin and cute. It's
really focused on health and fitness, and that was
a big shift for me. And so I just try to
anticipate by trying to be healthy.
DR. HARPHAM:
Darcy, how about you? When things happen, how
much do you wonder how much they're related to
your cancer and treatment or how much do you
attribute them to age?
DARCY:
Well, obviously when I went into early menopause I knew that was the cancer,
but
DR. HARPHAM:
The treatment.
DARCY:
Sorry? The treatment, yeah. But now that I'm
almost 45, I'm like, okay, well you know, a lot of
women go into menopause at 45. So I'm almost close
to where I should be. I sometimes feel like I'm
fighting demons in me that say I became older,
quicker, cause there's a part of me that looks in
the mirror and says, no, you look fine, you're
doing okay, don't go there.
DR. HARPHAM:
Well actually, medically there is something to
saying that physiologically, there's been some
acceleration of some of the aging processes, and
in terms of aftereffects, medical problems that
occur after successful treatment. Many of these
are earlier presentation of normal, age-related
changes and problems.
DARCY:
Perhaps I'm a little in denial, because, you know,
falling in love at a late age, finding a lot of
happiness for me, has made me feel like, this is
my chance to be young.
DR. HARPHAM:
Well, you're an artist, how has your cancer
affected your work? How do you channel these
thoughts and feelings, which are very emotional,
in to your work?
DARCY:
Well, I started painting my emotions and feelings when I was ill. Prior to that,
I wasn't doing that, so I just continue to use my painting as a tool to help
me express and understand a lot of it, and I actually have done paintings about
my body aging, about myself feeling old. When I was trying to figure out my
fatigue, I did a couple of works to help me understand better and actually showed
them to my internist.
DR. HARPHAM:
So it helped you one by expressing it, two by
sharing it with your doctor. Did you share it with
anyone else?
DARCY:
Yes, friends, definitely my fianc&#eacute; of course had
seen a lot of the work. It helped me because as
you can see, sometimes I cannot verbalize what I
feel and I can put it down on paper just fine.
DR. HARPHAM:
In art, with the paint?
DARCY:
Yeah.
DR. HARPHAM:
Do you think your illness pushed you to explore
some new avenues of creativity?
DARCY:
OH YEAH! It made my art much, much better. I think
it's made me braver in exploring, I dare myself to
paint things that in the past I would have been
too timid to, I think my work has become much
bolder, much more honest, and life-affirming, and
closer to my heart. Closer to who I am.
DR. HARPHAM:
And I understand that we can see your work on the
internet.
DARCY:
Yes, you can see my work on my website
www.DARCYartist.com .
DR. HARPHAM:
Carrie, how about you?
CARRIE:
I did a lot of journaling through my second time
on chemo and actually then shared it with my
husband, who'' find it in the morning on some
mornings, that kind of thing. And I put it
together in just a little, self-published little
book, and have shared it then with my friends and
family who went through the chemo experience with
me. And then I share it with other people just
kind of as a support process of validating what
they're doing, too. And I think that the biggest
thing for me is being able to identify, I'm a
clinical social worker by background. And so to be
able to identify and affirm for people and for
myself through the whole process that there's a
lot of this that's an emotional experience as well
as the physical. And there are valid feelings and
valid experiences that are just a part of the
process, and that finding out what those are and
being able to identify it, just helps so much in
terms of not feeling crazy. Being able to share
your experience with people in a way that they can
understand what it's like, and make it not quite
so foreign to them, too.
DR. HARPHAM:
Carrie, it sounds like your writing helps other
people understand what you were thinking. Did your
writing help YOU understand?
CARRIE:
Oh, so much. Because what I would do often is, I
wouldn't be able to sleep cause thoughts were just
kind of going through my head, and so I would get
up and write. Or, I would be driving around doing
something and trying to figure out what in the
heck is this feeling all about, and be able to
express it through words and through a lot of
analogies, because it was such a foreign
experience for me to be having these feelings. So
it was just helpful to identify it and put it into
words, and also just as a part of the emotional
healing process, then after a couple of years
after chemo, it was like, "Oh, my god, why am I
still crying, all of this stuff." And I could go
back and say, "oh, yeah, that was pretty tough."
That you had a pretty intense experience. See what
you were feeling at that time. So that was really
helpful as well.
DR. HARPHAM:
The other thing is, you can see how far you've
come.
CARRIE:
Exactly.
DR. HARPHAM:
It's hard to remember, sometimes, without looking
at written words. Nancy, tell us about your
writing.
NANCY:
Well, I took a cue from you and started sending
out family and friends letters from when I first
was diagnosed. And part of that was because
everyone was so interested, and I did want to keep
everyone informed and it helped me clarify what I
was doing and how I was feeling, and you know, I
got such wonderful input about the letters. I
tried to interject humor and whenever possible and
I just got a lot of joy out of writing, and. .
DR. HARPHAM:
And it kept you connected to a lot of people.
NANCY:
It did, yeah.
DR. HARPHAM:
In a very energy-conserving way.
NANCY:
Yes, exactly. And I do want to write more about my
experiences, like my interests have changed from
before this whole experience. And I guess another
reason I like to write it to friends and family
and people to help them, to try to help them take
the fear out of the word "cancer" and to give it a
human, I mean, you know, that concept that...
DR. HARPHAM:
Normalize it a little bit.
NANCY:
Yes, and that you are not cancer, you're still you
but you happened to have cancer. And that I know
for myself, before I was diagnosed, I mean the
word "cancer" was so scary, and you know and I
didn't know what to say to people, you know, when
they got it, and so in that way I've been really,
been thankful for this whole experience...
DR. HARPHAM:
You were able to use your writing as a tool to
teach other people.
NANCY:
Yes, and just to, express my feelings and kind of
see it through a different perspective myself. In
fact, is my Mother.
DR. HARPHAM:
And it validates it too, when you write it down,
it validates your new understanding.
NANCY:
Yeah, un huh.
DR. HARPHAM:
I remember one time I was going through treatment.
And it was pretty mild treatment and I really
wasn't feeling very sick, and somebody looked at
me with very sad eyes and said, "I'm sorry you're
sick" and I looked at the person and said, "Well,
I'm not sick, I just have cancer.!" And I wasn't
joking, I meant it!
DR. HARPHAM:
Well, let's switch a little bit and talk about
positive attitude. One thing every survivor hears
about is having a positive attitude. And I'd like
just for a moment to talk about attitude and
cancer. Nancy, how has attitude played into your
survival?
NANCY:
I would say it's a major factor, and not just so
much being on a like an optimistic or kind of a
high type of thing. But being able to, I guess you
know, beginning with my faith, that God is in
control and that I was comfortable with whatever
happened. I mean, I didn't realize that I wasn't
but I was comfortable with the thought of dying.
But dealing with chronic things was not on my
agenda.
DR. HARPHAM:
People think it's a toss of the coin, you'll live
or you'll die. And you landed on the side of the
coin.
NANCY:
Yes, uh huh. And I can think of so many things
that affected my attitude and you know that I'm
very thankful for.
DR. HARPHAM:
Such as?
NANCY:
Well, I know it's controversial with different
people, but I have read Bernie Siegel's book, (Dr.
says "Love, Medicine and Miracles") and then the
one right after that, too, I forgot the name of
it. And I listened to his tape and I feel like it
helped me to relax with my, you know when I had
chemo or different things. But then after the
transplant, like there's a with anything, there's
different cycles and so I moved away from Bernie
Siegel to you know just some other things. And I
remember my mother telling me when she read some
of my letters that she said she couldn't believe
it was me, because I sounded so different.
And I guess you know being faced with the
possibility of death, and also being around people
you know did lose a lot of close friends that I
developed in support groups and things. And then
the death of my own parents the same year I had
the transplant and all of this, I just felt like
deepened my ability to relate to people and my
desire to do so..
DR. HARPHAM:
Well I know you talk about "hopeful acceptance"
and you know, attitude is linked to optimism and
hope and optimism is the belief that things WILL
turn out well; and HOPE is the belief that
something you WANT to happen can possibly happen.
So, tell us about hopeful acceptance. And I know
some people call this acceptance with hope.
NANCY:
Yes. I got the term from you, actually, you know,
you've helped me a lot with dealing with different
phases, and cycles of cancer and then after cancer
and so forth. And to me, instead of just falling
into despair about these constant things that were
"what I looked at for a while as hindering me",
and continue my life and feeling worthwhile. You
know I began to think that it just may be that I
don't get back to what I think I should. And that
was, you know it took several cycles of things to
come to the acceptance that yes, I do have chronic
things, and then but to always hope. Like my
doctor tells me the DVH with some people it kinds
of burns itself out, in seven years, and well,
this is my seventh year. So..
DR. HARPHAM:
At the same time you accept that it may be this
way from now on, you still hope that it may get
better.
NANCY:
Yes. To me that is just, it taught me a wonderful
way to live, because that can apply with anything.
And so that I'm facing reality and accepting that,
but then I always hope. I forget which one of the
other ladies mentioned it, options.
DR. HARPHAM:
That was Carrie. Carrie, how has attitude played
in to your survival?
CARRIE:
You know, it's been an interesting challenge to
kind of find an attitude that can work with
whatever comes up. And I will always remember a
big turning point for me was by the third
diagnosis. We were pretty darn worn out, and we
were waiting, anticipating that I'd have to have a
bone marrow transplant. And I was in my kitchen in
the morning before we were going to go to the
doctor that day and find out the results of
whether or not I'd need a bone marrow transplant.
And I was there in the morning and I went, Okay,
going to the doctor I bet it's back because the
last three times it's been back, okay, well, you
know what, it might not be back, they might be
wrong. Just a whole conversation with myself and
oh, yeah, right, hope never dies.
And you know what? It doesn't have to die. I
could still hope. I can live with hope, because I
can take that with me, no matter what happens. And
there's a wonderful quote by Vaclav Havel the
president of Czechoslovakia, that has really
helped me a lot. It's "I'm not an optimist,
because I'm not sure that everything ends well,
nor am I a pessimist, because I'm not sure that
everything ends badly. I just carry hope in my
heart."
DR. HARPHAM:
Oh, that's wonderful.
NANCY:
And it's just been so helpful to me, because I can
always hope. And that doesn't mean that it's all
gonna end perfectly, and even when we thought that
I'd probably die from all this stuff, but you know
what, then I can hope for a good death. Then I can
hope for having made a difference while I was
alive, instead of, hope doesn't have to be one
thing, doesn't have to be a cure, doesn't have to
be perfect health. It can be that I get to do the
things that I want to do each day.
DR. HARPHAM:
While there's life, there's hope.
NANCY:
Right.
DR. HARPHAM:
Before we close, I'd like for each of our guests to just share with us one or
two sentences about what you've learned from living with chronic problems, that
are the result of lifesaving treatments. Nancy?
NANCY:
I would say that I can live life to the fullest in
whatever circumstances that I'm in, whatever
health or things that are going on, there's always
a way to live in the hopeful acceptance and to
experience fullness of life.
DR. HARPHAM:
Darcy?
DARCY:
I think the most important thing that I've learned is to always look at the
bigger picture, never get bogged down in details, and always listen to my body.
DR. HARPHAM:
Carrie?
CARRIE:
I think mine is probably that you don't have to
know how you're gonna get through something in
order to get through it.
DR. HARPHAM:
Excellent. Oh, gosh. The three of your are wonderful. I hope our discussion
has helped sort through some of the issues that may be a part of your life.
A big thanks to our guests, Carrie, Darcy and Nancy, 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 web or by phone. For the American Cancer Society's
Cancer Survivors Network, I'm Dr. Wendy Harpham, wishing each of you a great
day, today and every day.
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(6 minutes 52 seconds)
