Talk Shows and Stories : Caregiver : CareCast: Caregivers
Speak Out On Their Concerns
CareCast: Caregivers Speak Out On Their Concerns
Recorded August 29, 2002
Welcome and Participant
Introductions
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Dick Foley:
Hello and welcome to the CareCast. This is a live
Internet broadcast brought to you by the Cancer Survivors
Network, a free service from the American Cancer Society. I'm
your host, Dick Foley. Today's topic is speaking out on your
caregiver concerns, and joining me by phone today as our guests
for this discussion are four cancer caregivers from across the
country. As a cancer survivor myself, I have very much been
looking forward to this evening's discussion. And so, first let
me briefly introduce our guests, and then I'll open up our
discussion as we talk about issues such as: providing physical
and emotional support for loved ones facing cancer; the role of
caregivers in the decision-making process; knowing when and how
to confront the hard questions and problems; getting doctors to
communicate honestly and sensitively; helping loved ones deal
with real world challenges; and taking the caregiving experience
day to day.
 Our
first guest is Leonard, who is a former caregiver and cancer survivor from Oklahoma.
Leonard is 49 years old. He is widowed and has two daughters from his first
marriage. His daughters are 18 and 20, and they live at home. Leonard, welcome
to the show. Glad to have you with us.
Leonard:
Good afternoon, Dick. Thanks for having me.
Dick Foley:
I'll just briefly recap your story, Leonard, and
if I go off the track someplace as we get into our discussion,
you can correct anything that may not be quite accurate. But
back in 1994, you and your wife at the time, Donna, had just
returned from Taiwan. Donna had been experiencing continual
vaginal bleeding and her doctor told her she perhaps had an
infection from overseas. So the doctor prescribed medication,
but this had no effect. Donna then saw a second doctor, who did
a Pap smear and diagnosed stage III cervical cancer. Donna's
only treatment at this time was a hysterectomy. She experienced
a severe recurrence in 1995 and underwent chemo. Within a couple
of months, her doctor gave her a two-week prognosis. And I'd
love to hear from you as we get into this, Leonard, how both of
you handled that. She continued the chemo, and you spent nine
months taking care of Donna around the clock before she died at
home. You yourself then were diagnosed with stage IV malignant
metastatic melanoma in January of this year and are undergoing a
year of chemotherapy. We're delighted that you would take time
to share your story with us today, Leonard, and I will get back
to you with some questions in just a moment.
 Our
next guest is Beckie. Beckie is a 58-year-old caregiver from Virginia. Beckie
is married, has two adult children, a son 33 years old and a daughter, 30. Beckie,
it's nice to have you with us. Thanks for joining us.
Beckie:
Thank you.
Dick Foley:
We're going to talk a lot about your daughter,
Katrina, because it was she who was diagnosed with brain cancer
in 1996, when she was 24 years old. Katrina experienced
headaches and seizures, and she had both a CAT scan and an MRI
performed. A lemon-sized tumor was found, and it was thought to
be benign. It was found in the right side of her brain and was
surgically removed. She had no follow-up treatment, but six
years later she had another MRI and the results led doctors to
believe that something else was going on. So she was operated on
and seen by several doctors. The conclusion was that she had a
stage III brain cancer. It's called an anaplastic astrocytoma.
Did I say it correctly?
Beckie:
Astro-cy-toma. You were close.
Dick Foley:
Cytoma. OK.
Beckie:
[laughs]
Dick Foley:
Katrina underwent four months of chemo and then
external beam radiation. She underwent more surgery in 1997,
followed by monoclonal antibody therapy. Patients with this type
of cancer normally live up to five years, but Katrina, as you
just told me a few minutes ago, has just celebrated six years
since that first surgery. Is that correct?
Beckie:
That's right!
Dick Foley:
And you have acted as her determined researcher
and advocate as well as a day-to-day caretaker for your
daughter. So we thank you very much, Beckie, for being willing
to share that story with us.
Beckie:
You're welcome.
 Dick Foley:
Our next guest is Dr. Ken Miller. Ken is a practicing oncologist who has been
a caregiver for his wife, Joan, a cancer survivor. Ken is 46 and lives in Maryland
with his wife and three daughters, who are 18, 14 and 10. Ken, nice to have
you with us, as well.
Ken:
Thanks for having me.
Dick Foley:
In 1998 your wife had a fever of unknown origin
and also some severe bone pain. This went on for a period of
weeks, during which time you went from doctor to doctor looking
for answers. The symptoms then disappeared, but four months
later bruising appeared on Joan's skin. She became fatigued and
had shortness of breath, and blood work was done and the report
was read to you at midnight, while you were working at the
hospital, and it was leukemia. Probably not the kind of news
anybody wants to get, especially at midnight.
Ken:
No. It was a real shock, and just also trying to figure
out: what do I do with the information?
Dick Foley:
Exactly.
Ken:
You know, sort of in the middle of the night.
Dick Foley:
Oh! More tests then verified that it was in fact
an acute leukemia. Joan had three courses of chemotherapy
through the spring of 1999, into January of 2000. She was
deathly ill during this time, but since then she has been in
complete remission, and she is currently teaching classes to
deaf children five days a week. You have said that the
experience of your wife's illness has profoundly affected your
practice of medicine, and we'll be really anxious to talk with
you about that. Thanks for being with us, Ken.
Ken:
Thank you.
 Dick
Foley:
Our last guest is Carol. Carol is a caregiver from the state of Missouri. Carol
is 50 years old, married. She has two adult sons, a 24-year-old who lives away
from home and a 27-year-old who lives at home. Welcome to the show, Carol.
Carol:
Thanks. I'm glad to be here.
Dick Foley:
In 1989 your older son, Matt, then 14 years old,
experienced migraine headaches, a stiff neck and blurred vision.
He went to a hospital and underwent two and a half weeks of
testing. The tests, however, were inconclusive and your son's
symptoms seemed to be going away, so the doctors sent him home.
After a day, however, Matt's symptoms returned so he went to an
emergency room and from there he was referred to a children's
hospital. You must have been frantic during this time,
Carol.
Carol:
Oh yeah. Mm-hmm.
Dick Foley:
Matt had more tests done and stayed in the
hospital about three months. The doctors had a hard time
diagnosing his cancer because it usually occurs in younger
children and Matt's case was atypical. The first biopsy was
inconclusive, but the second one confirmed the diagnosis of a
brain cancer, and it was a medullablastoma.
Carol:
Mm-hmm.
Dick Foley:
Matt's cancer was considerably advanced--so much
so that some doctors hesitated to treat him, but he did undergo
surgery, followed by four courses of chemo and then six weeks of
full head and spinal radiation. Now he is in remission and he
goes to the doctor for check-ups. Matt's treatment has left him
legally blind, so consequently your caregiving involves cooking
and providing transportation for your son.
Carol:
Mm-hmm.
Dick Foley:
We certainly thank you, Carol, for being a part
of our program tonight, as well.
Carol:
I'm glad to be here.
Providing Physical and Emotional Support... And So Much More
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Dick Foley:
Let's talk about this caregiver role, which I
think may be poorly understood by a lot of people--but I bet the
caregiver would be first to acknowledge, as we hear a lot,
cancer is indeed not an individual's disease, but a family
disease. Caregivers must not only provide the support their
loved ones need, but they too must have to face the realities of
the cancer diagnosis. Leonard, do you remember some of the first
things that you thought about when you were told that your wife
had cancer?
 Leonard:
Yes, I did, because I know that as soon as they told her that she had cancer,
just the word "cancer" really freaked her out, for a better way to put it. And
she was in a lot of hysterics and just really having a difficult time to deal
with it. So I had a lot going through my mind of how I was going to try to help
her to get to accept it and then to be able to go on and try to fight it as
much as possible and get through it.
Dick Foley:
Sure. But I mean, in the meantime, you are
dealing with your own feelings, as well, because even though the
cancer isn't in you it's in the body of someone you love. And
you're called upon to be their strength and their rock, but
you've got your own emotional challenges to deal with.
Leonard:
Absolutely! You've got--when something like that
happens, you don't always have all the knowledge of what cancer
is, what it does, what you're going to be dealing with, and so
it's a whole new experience anyway. And then you don't have any
idea how long they're going to live, if they're going to live,
and it's just an overload of emotions at some times.
Dick Foley:
And a lot of uncertainty.
Leonard:
Yes, very much so.
Dick Foley:
This probably was a process, Leonard, but I'm
wondering if looking back now, if you realize there was anything
in particular that may have helped you, maybe helped you the
most, coping with your own feelings and fears while you were
taking care of Donna?
Leonard:
It always helps to be able to have somebody to talk
to.
Dick Foley:
Mm-hmm.
Leonard:
And I have to say that I have always been able to
have my faith, a lot of prayer, and you can get prayers from
other people, the churches, families, and you need all the
support that you can be able to get, to help get through
that.
Dick Foley:
Well, those are two good pillars there--somebody
to talk to and faith. What was the most difficult part, do you
think, Leonard, for you in the role of caregiver?
Leonard:
I think the most difficult part was when the cancer
doctor talked to my wife's mother and myself and said that she's
only got two weeks to live. He recommended not continuing with
chemo, because she was pretty much pain-free--just to go ahead
and let her go peacefully. And that was very difficult, because
she was kind of wanting to go ahead and go on with the chemo--
and there's always that little bit of hope in one's mind that it
may just work. So one of the biggest decisions and hardest
things to face was: do we go ahead and do the chemo, or do we go
ahead and just let her have some peace and what little quality
of life that she may have left?
Dick Foley:
So that was the choice between length of life and
quality of life and the time she had remaining?
Leonard:
Absolutely!
Dick Foley:
Not an easy decision.
Leonard:
No, very difficult decision right there. And now
that we had made the decision to go ahead and help her with the
chemo, I still have the questions today if I still made the
right decision or not.
Dick Foley:
Yeah. Well, I can understand how that would be a
struggle for anyone. Do you think, Leonard, there is anything
that you learned from your caregiving experience that is helping
you, now that you've been diagnosed yourself with cancer?
Leonard:
You just have to look at what they went through, and
I draw a lot of strength from that. My dad also passed away from
multiple myeloma, bone cancer, in ‘95.
Dick Foley:
Mm-hmm.
Leonard:
And watch what they went through, what they faced,
what they dealt with and that. I've drawn strength from that, to
deal with what I'm going through now.
Dick Foley:
That's an interesting comment. You've had some
considerable cancer, then, in your family.
Leonard:
Yes, sir.
Dick Foley:
And you've had experience with it from all sides
of the issues, so it may be making it slightly easier for you as
a patient.
Leonard:
It's making it much easier for me. Much easier.
Dick Foley:
That's good to hear. Beckie, let's talk about
Katrina. She was 24 when she was diagnosed. What goes through a
mom's mind when the doctors tell you that your daughter has
cancer?
 Beckie:
Everything under the sun, and nothing.
Dick Foley:
Mmm!
Beckie:
I think that a real shock value takes over.
Dick Foley:
Mm-hmm
Beckie:
And the way it was presented to us--unfortunately, in
the beginning her symptoms and the onset of it were so
absolutely frightening and out of the clear blue, that once we
had a diagnosis, strangely enough it almost alleviated a few
things. But this falls into that realm of the lack of knowledge.
I mean, I thought that once they did diagnose a tumor and the
surgery removed it, and we'll get on with our lives.
Dick Foley:
Mm-hmm.
Beckie:
Just, you know, she had just gotten her Master's
degree from college.
Dick Foley:
Oh my.
Beckie:
Had no insurance because we knew she would be in a
professional job very shortly, and in fact she was to go to work
two weeks after her first diagnosis, so we just had all kinds of
things [laughs]. Didn't even know if the hospital would treat
her, you know, with no insurance, so--
Dick Foley:
Yeah. But in addition to the role of caregiver,
then you also found yourself thrust into the role of researcher
because you needed to learn so much, so fast.
Beckie:
Totally. And she had not moved away from home.
Dick Foley:
Mm-hmm.
Beckie:
She had just come back after doing an internship for
the summer with her college degree and was still in our home. So
it wasn't like--even at the age of 24, she had not taken that
one last step to be out totally on her own, so certainly we were
her primary caregivers and needed to educate ourselves--but had
complete faith in the doctors, but just found out they didn't
share. They didn't--one of the hardest things for us to deal
with was that they didn't want to talk to us. When I say "us" I
mean her father and me. She was an adult. They looked at her as
an adult.
Dick Foley:
Oh, sure.
Beckie:
You know, they did not want to include us whatsoever,
in conversations or doctors' visits. I even said to the surgeon,
when I took her back to have the staples removed from the
surgery, "I hope you don't mind if I come back with her." And he
looked at me and he said, "Well, you're here now, aren't you?"
So, you know-- [laughs]
Dick Foley:
Oh my.
Beckie:
Yeah, yeah.
Dick Foley:
So that definitely added another degree of
difficulty.
Beckie:
Totally, totally.
Dick Foley:
Because, though she is your daughter, she is an
adult, and that's the way the relationship was treated.
Beckie:
Of course she is, but you know, you don't dump this
on anybody alone.
Dick Foley:
Right.
Beckie:
And expect them to handle it, and even at 24 and six
years of college under her belt--
Dick Foley:
Yep.
Beckie:
--and ready to step out into a professional field.
You know, I'll never not be a mother, I don't guess.
[laughs]
Dick Foley:
Yeah. And I think that's true for every mother.
[laughs]
Beckie:
Well, I think so.
Dick Foley:
Yeah.
Beckie:
And I think it has to be not making light or taking
away from anybody's situation.
Dick Foley:
Sure.
Beckie:
I can't imagine anything harder than it being your
child, and I don't care how old that child is.
Taking Care of Yourself While
Caregiving
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 Dick Foley:
So as you dealt then, Beckie, with all these
complicated issues, somewhere along the line, sooner or later
caregivers have to realize that they need to take care of
themselves a little bit too.
Beckie:
Yeah.
Dick Foley:
Otherwise they won't be effective as a caregiver.
What helped you the most in dealing with your own feelings and
your fears, and how did you get through that emotionally?
Beckie:
Katrina's strength.
Dick Foley:
Really?
Beckie:
I gauged nearly everything by looking first at her.
The day her long blonde hair started coming out from the
radiation, and we knew this would happen.
Dick Foley:
Yeah.
Beckie:
We were a little long into this by then, but when she
said, "Look, Mom." And ran her hand through her hair, and I knew
exactly what she was showing me. First thing I did was look at
her.
Dick Foley:
Yeah.
Beckie:
And I said, "Well, when did that start?" Well, it had
started earlier in the day, but I wasn't at home. I was out
working.
Dick Foley:
Mm-hmm.
Beckie:
I didn't cry. I went on. I got supper together. But
the minute dinner was over, I had to think, where can I go at
8:30 at night?
Dick Foley:
Yes.
Beckie:
I've got to get out of here and let this go. You
know? [laughs]
Dick Foley:
Yep.
Beckie:
So, I try to gauge. If she cries, or when she cries,
believe me, I cry with her.
Dick Foley:
Sure.
Beckie:
If things come up that I'm amazed that, you know,
she's able to get through it, then I suck it in until--
[laughs]
Dick Foley:
[laughing] OK. But you are taking your cues from
your daughter?
Beckie:
I am.
Dick Foley:
Yeah. That's really interesting. How did she deal
with the issues that you talked about when the medical staff
didn't want to talk with you and her father, but rather, just
with her?
Beckie:
Well, I have to say that our initial experience was
just pretty bad there. And when at six months the surgeon said
he thought she needed surgery again, this is when we started
looking for some other opinions. She realized--she had majored
in speech pathology and audiology.
Dick Foley:
I see.
Beckie:
She knew much more about the brain than we did. When
she was wheeled into her very first surgery, and the nurses were
talking to her and letting us sit there until they actually
wheeled her into the operating room, and they asked her what she
did--and blah, blah, blah. And when she said something about she
was an audiologist and she said, "And believe me, I know how
lucky I am." Meaning the location of her tumor--
Dick Foley:
Yes.
Beckie:
--couldn't have been better if you're going have a
brain tumor. [laughs] Her knowledge, I think, helped her in her
understanding. And truly she was able to help us-- [laughs]
Dick Foley:
Mm-hmm.
Beckie:
--more than anybody else could at that juncture,
until we got into a brain tumor center and were actually seen.
And once we did that, they do accept the whole family, and they
do comprehend that it does take the whole family.
Dick Foley:
Yeah. Having it to do over again, Beckie, what
might you have done differently in terms of the doctor-patient
communication?
Beckie:
Knowing what I know now, I probably never, and I keep
saying "I", but everything we did was Katrina--and still do--it
was very much a joint decision.
Dick Foley:
Mm-hmm.
Beckie:
Except for the fact that when they made her diagnosis
of a brain tumor and it took several days to get the MRI done.
She was hospitalized. They thought she could have had a stroke.
Dick Foley:
Ahh.
Beckie:
They weren't totally sure, but once they made the
diagnosis, they even told her she didn't need to have surgery.
They had the seizures under control with medication and maybe
she would want to reconsider or, you know, give it some thought.
Her thoughts were: "I want this thing out of here! I'm ready to
take my job, start my career. I don't want this hanging over my
head."
Dick Foley:
Mm-hmm.
Beckie:
So again, thank goodness she was--made that decision,
because, as I said, their pathology was wrong. Everything was
wrong. They told us it was a benign tumor. If we had taken their
advice and just let it go, she would not be alive.
Dick Foley:
Right.
Beckie:
I mean, there's no way. But I had such faith in the
doctors who were on call in the emergency room and just didn't
know enough. I wish we had gotten another opinion initially.
Dick Foley:
OK.
Beckie:
I just don't think our area was equipped to deal. I
did not ask the question: "How many brain tumor surgeries have
you done?" And I wish I had asked that question.
Dick Foley:
OK. And your emphasis on second opinions is
something perhaps we can talk with Dr. Miller about. We know,
Beckie, that patients obviously undergo some enormous physical
and emotional challenges as they battle cancer, but I would
submit that the caregiver does, as well. How did all of this
impact you both physically and emotionally?
Beckie:
Physically it changed our whole lives, because my husband was ready to retire,
and I was going to retire when he did. He went ahead and retired. I am still
working. Emotionally my work helps me. I am still working, not only because
with the financial situations and Katrina on Medicare and Medicaid--there are
still lots of bills. [laughs]
Dick Foley:
Yes.
Beckie:
It is an outlet for me, and I had to learn that my
being with Katrina 24 hours a day, seven days a week wasn't in
her best interest.
Dick Foley:
Mm-hmm.
Beckie:
Nor was it in mine. Once the deficit set in--I get so
frustrated and short of patience when I'm with her for several
days in a row.
Dick Foley:
Yes.
Beckie:
That I'm not good for her, and that in turn is not
good for me, so I've had to distance myself, if that makes any
sense. Right now she is not undergoing treatment, so she isn't
ill. If she needed me, that's where I'd be, OK, but--
Dick Foley:
If you had to respond to the question, "What's
her prognosis today?" then what would you say?
Beckie:
I don't think anyone knows.
Dick Foley:
OK.
Beckie:
Because she has had all of the cutting-edge
experimental treatments.
Dick Foley:
Yeah.
Beckie:
I honestly don't think her doctors could answer that
for us. And I don't think they could tell me what they would do
if there was a recurrence.
Dick Foley:
All right. Carol, let's turn to you for a moment,
because, unlike Beckie, your child was not an adult when he was
diagnosed. How did you respond when those words came from the
doctor that your then 14-year-old son had cancer?
 Carol:
Well, like Beckie, it's just such a total, unbelievable shock. In Matt's case,
by the time we were finally told at that second surgery, he had been hospitalized
for about three months and a few days. We were, all of us, exhausted from just
the recurrent tests and trying to diagnosis this. It presented itself in a way
that even though I was at a major university hospital here they really struggled
with it. I mean, he had just repetitive testing, trying to get some cells or
something that they could explain why Matthew was deteriorating. He was a very
fine athlete. And he, at this point, was down to about 130 pounds, and he couldn't
swallow. He couldn't eat.
Dick Foley:
Wow.
Carol:
And he was in a wheelchair, and so we were basically
watching him, every day, die, and they couldn't seem to get--
they couldn't seem to diagnose. And finally on the 26th one, in
the fluid, they were finally able to extract some cells, and
then they knew that they were dealing with something that was a
malignancy here of some sort.
Dick Foley:
Did it help, finally, just to have a
diagnosis?
Carol:
It helped in that you had some direction, even though
at this point, some of the doctors in conferring were kind of
split down the middle. Some thought, why do we want to put this
kid through this?
Dick Foley:
Mm-hmm.
Carol:
And they knew it would be a long course of treatment
and would, could very possibly have some really bad effects on
him. And then the other side of the coin was some of the doctors
said, "No. We need to--we don't know what kind of personality
we're dealing with here, and let's give it a shot, and let's do
all we can." You know?
Dick Foley:
How was Matt dealing with it all?
Carol:
I tell you, Matt was just so brave!
Dick Foley:
Was he?
Carol:
You know, he was so brave, and some of it was the fact
that because he was young and had not been exposed to a lot of
information, I don't think he was afraid like we, as his
parents, and aunts and uncles, and his grandmother, and because
he really didn't know enough about cancer. He knew it was
bad.
Dick Foley:
Right.
Carol:
But he didn't know how bad.
Dick Foley:
Let's focus for a moment on your feelings and
what you were going through emotionally. What was helping you,
or can you look back now in retrospect and realize what helped
you the most to deal with your fears and your feelings?
Carol:
Well, before he was diagnosed, I have to say, I was
afraid all the time, you know, because we didn't know what was
going on. But at the same time, I had--
 Beckie:
There was hope.
Carol:
--some doctors that said "Take one day at a time."
Dick Foley:
Mm-hmm.
Carol:
And that was probably one of the best pieces of advice I got as we were all
going through this, is don't try to think about planning so far ahead.
Dick Foley:
Sure.
Carol:
You know, get through today, and when you get through
today, then get up tomorrow and make it through tomorrow, and
don't think too far ahead. And that was probably really one of
the best pieces of advice I had. And--
Dick Foley:
As you provided both care and support for Matt,
what were the toughest challenges in that? What was the hardest
part?
Carol:
The hardest part--well, I did have a younger son at
the same time. And he was in sixth grade, and of course he was
left with friends and neighbors and relatives, and I had a
concern there that I was gone so much, because I did stay at the
hospital with Matthew while he was there. Then I'd come home,
but then if I'd come home for a few hours, then I felt like I
needed to be back there. So it was just really easier for me to
stay there.
Dick Foley:
Mm-hmm.
Carol:
And I also had a strong faith and a large church
family who we had a lot of prayer support through, a lot of help
with our younger son. And I would come home and there would be
a meal here ready for us and somebody had brought a meal over,
and those kind of little things that, you know, helped an awful
lot.
Dick Foley:
Sure.
Carol:
I just think we were just a very close family, and we
all just--we tried to stay focused on what was important, you
know.
Dick Foley:
Let's talk about that family closeness and how it
was impacted over the years. Matt, is he 27 now?
Carol:
He's 27.
Dick Foley:
And he's graduated from college.
Carol:
Right, and he just--he is legally blind.
Dick Foley:
Yeah.
Carol:
And he has some other--few, physically weaknesses, but
that being the major one.
Dick Foley:
Yeah.
Carol:
But he just started this week as an elementary school
teacher at the Missouri School for the Blind.
Dick Foley:
Oh, my gosh! Good for him!
Carol:
So he is teaching other blind students.
Dick Foley:
How would you say Matt's cancer experience has
changed your life outlook?
Carol:
Well, and I probably am speaking for myself, but I
probably would--everybody else on this line would probably say
the same thing, is that it does help you prioritize better and
think about not planning so far. Not worrying so much about, you
know, five years down the road or ten years down the road.
Dick Foley:
Somehow I knew you'd come back to that theme.
Carol:
Yeah.
Dick Foley:
So you've gotten better at taking one day at a
time.
Carol:
Oh, yes. Yes.
Dick Foley:
Yeah.
Carol:
Matter of fact, every day--you know, of course we all
have our challenges every day.
Dick Foley:
Yeah.
Carol:
It's just like, well, OK, I made it through this day,
and I'll get up and make it through tomorrow, you know?
Dick Foley:
There you go.
Carol:
And worry about tomorrow when I get up, you know?
Dick Foley:
Well congratulations to Matthew for his wonderful
new job.
Carol:
Yeah. He's really doing well.
Dick Foley:
That is great!
When a Doctor Becomes a Caregiver
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Dick Foley:
Ken, you are in a unique experience, because as
an oncologist, you are treating cancer patients every day, and
then one day you have to deal with the reality that your wife
has been diagnosed. How was that for you?
 Ken:
Well, it was surreal! You know, I kept thinking, it's got to be a mistake. Maybe
it's a virus. Maybe--all the things I think everybody thinks. Maybe the lab
made a mistake. But it was, you know, it was pretty clear that there was something
really wrong. I guess it was a reminder to me how quickly life changes, one
minute everything is sort of the way it's always been, and then the next minute,
life is radically different. So it was a tremendous shock for all of us.
Dick Foley:
How did you then adjust to the dual role of
oncologist and caregiver? What kind of challenges did that
create for you?
Ken:
Well, it's a difficult situation for anyone, and it was
for me, too, because on one hand, I do know a lot about the
disease of leukemia, and yet I was afraid in a sense to ask
questions---would the doctors, who are people that I know, would
they be mad? Would they feel like I'm being pushy? Would they
feel like I'm butting in? Would they take it out on Joan?
Dick Foley:
Sure.
Ken:
You know, all that whole set of emotions.
Dick Foley:
Now, you had some difficulty, or Joan, I should
say, did, in coming up with that diagnosis, and I read that you
went from doctor to doctor to doctor. Was that terribly
frustrating for you, too?
Ken:
Well, the first--I mean, Joan had, in a sense, two
separate illnesses. She had a fever of unknown origin that went
on for four months, and it was very frightening, like we were
hearing before, but not knowing what's wrong, and you start to
imagine the worst, which in fact was the case. And then she
actually got better. And then even when we found out that Joan
had the leukemia, there was a lot of debate. What kind was it?
And what Joan and I did was we were in two separate places
emotionally. I sort of focused on getting the medical
information, and I have to say Joan is a teacher and really
focused very much so on the kids.
Dick Foley:
Mm-hmm.
Ken:
How do we tell them? How do we support them? And so we
sort of complemented each other.
Dick Foley:
How did your kids deal with it?
Ken:
At the time they were 15, 11 and seven. And each one sort of coped with it differently.
Our youngest one, who was seven at the time, just needed very direct information.
Dick Foley:
Right.
Ken:
And the middle one was very much aware of what was going
on and had a lot more questions and was really upset. And our
oldest daughter I think sort of distanced herself a little bit
from it.
Dick Foley:
Mm-hmm.
Ken:
And that was her way of coping.
Dick Foley:
Yeah. Found it difficult to deal with it.
Ken:
Yes.
Dick Foley:
Yeah. I don't know whether you agree with this or
if this is the approach you take in your work as an oncologist,
but some professionals in your field may try to keep their
feelings out of a physician-patient relationship, and now of
course with your wife and in a caregiver role, your feelings are
all bound up in that.
Ken:
Yeah.
Dick Foley:
That must have been really confusing.
Ken:
You know, it was, and I saw with my colleagues, too. I
mean, on one hand, these are people who know me, and some of who
knew Joan, and I think it very much put themselves in our shoes,
because it could--you know, we're them and they're us! And yet
on the other hand, I could see them keeping a distance, too.
Dick Foley:
Right.
Ken:
And it was very confusing for everyone. I finally--in
fact, I would kid with the nurses. They'd say, "Oh, Dr. Miller.
How are you doing?" And I'd say, "No. Just call me Mr. Miller,"
because it was really very confusing who I was.
Dick Foley:
What helped you most, Ken, do you think, in
dealing with the fears and feelings you may have been
experiencing as Joan was ill?
Ken:
Sure. There were a few things. One is the social workers
at the hospital were fantastic!
Dick Foley:
Ahh.
Ken:
And I think one of them really directly role-modeled for
me how to very directly deal with some issues regarding Joan. I
mean, literally led me through a role modeling on how to do it.
And I mean, we needed more support emotionally, and he basically
taught me that you got to go to the doctor and say, "I need you
to look in Joan's eyes and tell her she is going to be OK."
Dick Foley:
Ahh!
Ken:
So the social worker helped. Friends were a big help,
and family, and I will say, for me, spirituality was a big
support for me.
Dick Foley:
Mm-hmm. Was it you, Ken, in whose notes I read
something about the word "hope", that it's free and has very few
side effects?
Ken:
[laughing] Yeah!
Dick Foley:
I think that was very nice.
Ken:
Well, thank you. You know, I actually--when I talk to
people, because sometimes people ask about statistics and
survival data, and you know, when I talk about Joan's illness, I
show a slide that looks at survival data in leukemia, and at the
very bottom of it, in big letters, is: "Hope is free!"
Dick Foley:
Yes.
Ken:
With a big exclamation point.
Dick Foley:
That's great! What do you think you may have
learned from the caregiving experience, Ken, that is impacting
the way you practice medicine these days?
Ken:
Well, some of the things are real just sort of practical
issues. I make a real point now, when I'm seeing a patient, of
turning my head and saying "hello" to the spouse, and saying,
"How are you doing?"
Dick Foley:
Mm-hmm.
Ken:
Because I know even that, you know--and then dialoging
with them, and getting to know sort of the family a little bit
better, because I know it made a big difference when people
tried to see how I was doing. I think we did something again
practical; our practice hired a nurse psychologist, and we pay
for her services so that people have that support available. So
these are some practical things, but really learning to
communicate more with the spouse.
Dick Foley:
Yeah.
Ken:
And I do tell people about my experience. I think it
allows them to feel like we have some stuff in common.
Dick Foley:
You bet! Those are great points. My wife really
appreciated that when I was going through my situation and the
doctors would inquire about her and her well-being and how she
was getting along through this.
Playing a Role in Decision-Making
|
|
Dick Foley:
Many times in the caregiver role we have to take
active roles in decision-making, or at least assist our loved
ones in making decisions, sometimes very tough decisions.
Leonard, what role did you play in helping Donna make these
decisions on her treatment or her care?
Leonard:
We talked about each decision after we had talked to the doctor, and then we
spent a lot of time talking about it, and then she usually turned the final
decision over to me to make.
Dick Foley:
Uh-huh.
Leonard:
There were a lot of decisions that she was not able
to make on her own. She simply just said, "I'm sorry. I can't
make that decision. Will you make it for me?"
Dick Foley:
Wow.
Leonard:
And that's where it took a lot of strength and a lot
of prayer and a lot of just--to be able to make that
decision.
Dick Foley:
Well in some cases, that had to be just an
awesome responsibility!
Leonard:
Yes, it was. It was a great responsibility, because
it's a lot greater responsibility when you're having to make a
decision for somebody else--
Dick Foley:
Yes.
Leonard:
--than having to make that decision for
yourself.
Dick Foley:
I can certainly see how you would rely on your
faith in an episode like that. Beckie, you've touched on this
because of the fact that, in fact your daughter was an adult
when she went through all of this, but did you and your husband
have roles to play, clear roles as decision-makers?
Beckie:
Actually my role did become the "looking into the education" portion of it.
Dick Foley:
Mm-hmm.
Beckie:
Not only from a medical standpoint, but we had to
have someone, again, look into Social Security, Disability,
Medicare, Medicaid.
Dick Foley:
Yes.
Beckie:
And Katrina was left with all of these bills
initially for having no insurance, and I tried to deal with
that. That, on top of the getting over the surgery and
recuperating initially, it was just more than any one person
could do. So I did become the advocate, if you will, for trying
to educate all of us on all of those different issues, and it
took all of us.
Dick Foley:
At a certain point in Katrina's illness, when the
deficits began to take their toll, then you were pushed into a
decision-making role, I would assume.
Beckie:
Well, no. Actually there were more decisions, I
guess, earlier on.
Dick Foley:
I see.
Beckie:
And it was a year, a good year after her brain
treatments that the deficits started showing up. She, too, she
is not legally blind, but she has lost all of her left
peripheral vision.
Dick Foley:
I see.
Beckie:
She cannot use her left hand, her left arm, her whole
left side. She has weakness similar to a stroke victim.
Dick Foley:
Mm-hmm.
Beckie:
So, once the chemotherapy, the illness, the every-day
radiation treatments and the various--the biopsies, the
surgeries--once that was behind us, and it has been now for like
a couple of years, the deficits began to take their toll, so it
took on a whole different thing.
Dick Foley:
Right.
Beckie:
Trina can't cut her food. She can't always dress
herself.
Dick Foley:
I see.
Beckie:
She is subject to seizures. She doesn't need someone
with her every minute of the day, but we don't leave her alone
for hours, OK?
Dick Foley:
Mm-hmm.
Beckie:
And the decisions we have had to make most recently
have concerned medications rather than anything else.
Dick Foley:
I see.
Beckie:
There are side effects of so many of the medications
that they have sort of wanted her to try, and so forth. We read
about them, and she is in better control of those decisions
right now than she was when everything was so new.
Dick Foley:
Mm-hmm.
Beckie:
But without any insurance and questionable things
along that line, it was her decision to be willing to be a
guinea pig, to go for the clinical trials.
Dick Foley:
Right.
Beckie:
But as I said, they were presented to us in a way
that gave us hope. [laughs]
Dick Foley:
Mm-hmm. Well, and obviously she had--and has--
great courage.
Beckie:
She does. She has been remarkable. She doesn't sit
and cry. She is not even on an antidepressant now.
Dick Foley:
Wow.
Beckie:
She was at one point. But she is trying to see about
getting prism glasses to see if she can get her driver's license
back [laughs], which I'm not real happy about, but you know.
Dick Foley:
Yeah. I hear you. Carol, let me turn to you for a
minute, because it's been a good number of years since Matthew's
diagnosis, and he's been through a lot, but the years have
passed. Has your role as decision-maker changed, and has it been
difficult for you to give up some of the responsibility for
making those decisions?
Carol:
Well, I am still very active with Matthew as far as any of his decision-making.
You know, he has been--it's been over 12 years now. But yet, like Beckie's daughter,
Katrina, he does rely on us a lot. And something that Beckie said earlier that
I can relate to, and that is: you never stop being a parent.
Dick Foley:
Yes.
Carol:
It doesn't matter how old they are. And I'm sure like
Beckie would be willing to do whatever to make things easier for
them.
Dick Foley:
Mm-hmm.
Carol:
But now Matthew, as far as his career choices--because
I knew that what he was going to do was going to be difficult
because of his visual impairment.
Dick Foley:
Yes.
Carol:
But he is a determined young man [laughs] and made it
in spite of me.
[laughter]
Carol:
Sometimes not thinking, you know, not having enough
confidence and faith in him.
Dick Foley:
Yeah.
Carol:
That he would be able to accomplish this, and you hate
to see him struggle.
Dick Foley:
Right.
Carol:
But that has built his character. I trust that God has
put him where he is supposed to be right now in his career
choice, and because many of his students will be in the same
position that he has been in.
Dick Foley:
Sure.
Carol:
They've lost their vision due to illness or brain
tumors or head injuries, and so he can really relate to those
kids.
Dick Foley:
You must be very proud of him.
Carol:
Oh, I am. I am. I just sometimes look at him and
think, Oh! You know, I don't know if I could have done as well,
had it been me, you know?
Dick Foley:
Yep.
Carol:
But he has been a remarkable young man. And one thing
I would like to add, and I know we're running out of time here,
is what Dr. Miller said is hope--that that's so important.
Dick Foley:
Mm-hmm.
Carol:
Just even a little. It only takes a little.
Dick Foley:
Yeah.
Carol:
There's always that little chance, and so, whereas
doctors always have to be honest and have to present the facts
and give you the worst case scenario. It's important that they
give you the best case scenario, too.
Dick Foley:
Sure. And mix in a little hope.
Carol:
Absolutely!
Dick Foley:
You bet. Ken, your role is different. It wasn't
that of a parent, it was that of a spouse. But there were these
decisions to be made in Joan's care, and of course she was being
treated, I assume, by other doctors and not by yourself. How did
you sort through all of that in this decision-making?
Ken:
Well, our relationship has been a pretty equal one for years and years and years,
and then suddenly a lot of the--and I'll say both the medical and non-medical
decisions had to be, you know--the way that we balanced our decision-making
changed dramatically. Most of the medical decisions, I mean, were made by her
doctors, but I really did have an input, which at one point was a somewhat major
one in terms of deciding about a bone marrow transplant.
Dick Foley:
Mm-hmm.
Ken:
And Joan really did sort of turn it over to me. And
then, after she got through all the treatment, then it's time
for life to go back to the way it was, and that's a rocky
transition. Well, it was a rough transition, because for a while
I was making--and needed to make--the decisions. But it goes for
the non-medical stuff, too. Typically Joan had really been the
person who organized a lot of things for the kids and made
decisions, and I was very involved, but really she took the
lead, and so that changed when she was sick, and then again had
to go back to its baseline.
Dick Foley:
Right.
Ken:
So, it's been a lot of transition.
Communicating with Doctors and
Confronting Tough Questions
|
|
Dick Foley:
Very interesting. I want to talk about, now, some
of these hard questions and problems, and some of them are
indeed very hard. As caregivers we have to confront issues that
are exceedingly difficult. On the one hand, we want to be
sensitive to what our loved ones are going through. On the other
hand, we know we may have to push them sometimes or do something
that they may not be crazy about, just to be able to help them.
Beckie, how about you? Did you have trouble asking difficult
questions, and what have you done to make that easier?
Beckie:
I still have a difficult time. Katrina still has been seen every two months.
Dick Foley:
Mm-hmm.
Beckie:
For MRIs, PET scans and work-ups. We just stretched
it out to four months for the first time in six years. So when
we go to the doctor, I still have a difficult time asking some
of the really hard questions in front of her.
Dick Foley:
Oh.
Beckie:
I wait sometimes, not so much right this minute, but
for instance, "How long before you think she'll be in a
wheelchair?"
Dick Foley:
Yes.
Beckie:
Or the vision. Losing more vision.
Dick Foley:
Right.
Beckie:
I find I cannot ask some questions in front of her. I
wait, and we may have discussed this here at home, or we may
have, you know, hit on the changes that we're seeing in her, and
I wait. I just wonder if I ask these certain questions, and
she's not ready to hear the answer, I feel like I will be
robbing something, taking something from her that you can never
go back.
Dick Foley:
Of course.
Beckie:
And I have spoken with her doctors. Ken may tell me
this is unethical. I don't know, but a couple of her doctors
have been willing to talk with me by myself.
Dick Foley:
I see.
Beckie:
And answer some of those questions. She always tells
me, when we go, that every time we go for a visit--like I said,
it's her dad, it's me, her brother goes. It's all of us! "Mom,
ask whatever you want to ask. Don't wait for me." I mean, she's
given me that carte blanche all along.
Dick Foley:
Yes.
Beckie:
But I have a very hard time still, with some of those
really, really hard questions.
Dick Foley:
Yes. I understand.
Beckie:
I just have to take her lead again and still do it
that way.
Dick Foley:
Sure. Now Leonard, in your case, if I can jump
back to you, you provided end-of-life care in your wife Donna's
life. What were the most difficult questions or problems for
you, and how did you face them?
Leonard:
One of the problems we had, it seemed like we came to the point with the chemotherapy
that the doctors were simply at a loss of which direction to go. They had tried
just about everything. They just seemed to be at a wall, so to speak. So I started
doing some research on my own, and I would--whether it was at a bookstore or
the Internet or whatever, then I would take this information to them and discuss
that with them, and sometimes they would ask if--you know, they'd say, "Well,
sounds reasonable. We hadn't seen that one yet." And they would give that a
try.
Dick Foley:
Mm-hmm.
Leonard:
And they'd ask our permission to do that. The other
difficult situation in that was my wife was not really able to
handle some of the decisions. She couldn't handle hearing them
discuss what they might be trying chemo-wise or something like
that.
Dick Foley:
Sure.
Leonard:
So it was kind of like Beckie was just saying. The
doctors were pretty good about talking to me, and we could
pretty much talk in private and make some of those decisions.
Then I could go back to my wife and explain to her what we had
discussed and talked about, and she took it a lot better like
that. It was much easier for her.
Dick Foley:
Did she find peace at the end, Leonard, in your
discussions and, you know, come to accept the fact that probably
her life would not be saved?
Leonard:
Yes, she did toward the end. She had a real struggle
until the very last.
Dick Foley:
Yeah.
Leonard:
She had a real hard struggle, and we stayed up many
nights just being with her and praying with her, talking to her,
whatever we could do to try to help her have a little bit of
that peace. But I do think at the very end she did finally find
that peace, and then she just slowly slipped away, and that's
kind of how it ended.
Dick Foley:
Right. We want to talk a little bit, in the time
that remains, about communication with doctors, because that's
something that, as we have been hearing, sometimes falls on the
shoulders not only of the patient but on the shoulders of the
caregiver, as well. Carol, what's your experience overall in
communicating with the doctors about Matthew, and would you
characterize it as good, productive, easy, or difficult and
challenging?
Carol:
I found it, especially in the beginning, very difficult because he was transferred
from one hospital to another and had to kind of start over when he was transferred
to the university. I think probably one of the most frustrating things was because
Matthew's diagnosis was so difficult that I couldn't quite get the doctors to
listen to me sometimes, when I'd say, "Don't waste time." They'd want to test
him for HIV, you know, and I'd say, "Wait a minute. Don't waste your time, and
don't waste precious resources testing him for drugs and for these sort of things,"
because, you know, I knew my son better than anybody. And I remember one of
the doctors had said to me, "Well, the parents are always the last to know if
their kids are in trouble." And I said, "But I do know in this case," that I
knew that my son couldn't have HIV. He was not sexually active. He was only
14.
Dick Foley:
Yeah.
Carol:
He did not have a drug problem. That's not what was
causing his mood swings and his headaches and his crankiness,
and I knew that, and that was very hard to get them to listen to
me, and not look at me as a meddling mother--
Dick Foley:
Yeah.
Carol:
--but someone who really did know their kid.
Dick Foley:
Were you ever able to make any breakthroughs in
that area?
Carol:
Yes. I finally did, and I had to do it in a way that I
don't normally like to do it. I finally had to raise my voice.
[laughs]
[laughter]
Dick Foley:
Carol, I'd like to turn to Ken and get his
response to the difficulties that you experienced in
communicating with physicians, and then also find out, too, from
you, Ken, how it went for you, especially as a physician
yourself.
Ken:
Well, what I encourage my patients to do now, and while I'm thinking about this,
I always tell people to bring themselves to the appointment. And by that, what
I mean, a lot of people--let me tell you this--everything that you described
we experienced also. So, I mean, I had the same kind of frustrations, though
I think probably not to the degree that you had, but the same kind of frustrations.
And I now sort of think to myself, we all need to bring ourselves. What that
means is, you know, doctors are people, too, and I think if someone brings just
a list of questions and they're sort of just looking down at the list and reading
me questions, that's different than someone who sort of says, "Here's who I
am. Here's the kind of person I've been, and I plan on getting better."
Dick Foley:
Yeah.
Ken:
Where, when someone sort of brings themselves and their
gusto and who they are to the appointment, it really does a
lot.
Dick Foley:
Absolutely.
Survivors and Caregivers Facing Reality,
Together
|
|
Dick Foley:
Let's move on to the real world challenges that
those we are caring for face. Leonard, can you look at one thing
in your relationship with Donna before she passed away that you
feel may have helped her face the issue that her time was
limited?
Leonard:
I guess probably the biggest that I saw that helped her face that part was one
of the things--when she had to sign the living will.
Dick Foley:
Oh, yes.
Leonard:
That was number one. And the other two, when she was
just slowly getting weaker and weaker and she would require more
help. There was a time she fought as hard as she could, even for
a simple thing, just to sit up for a drink of water or something
like that.
Dick Foley:
Yeah.
Leonard:
And once she started slowly getting weaker and
weaker, she started talking to me more and more and asking me if
she was going to die or not.
Dick Foley:
I see.
Leonard:
And that was extremely difficult, but it did seem to
help her start accepting that.
Dick Foley:
Where did you get your strength, Leonard, as you
faced this ultimate challenge with Donna?
Leonard:
Strength came from friends.
Dick Foley:
Mm-hmm.
Leonard:
It came from family and it came from faith, prayers
from the church. And you've just got to have that to be able to
get through it. You need all of it together.
Dick Foley:
Yeah. Beckie, you've told us about Katrina's
courage, and so I think we can maybe suspect what the answer may
be, but do you feel that she has brought most of the strength to
the table in terms of facing her cancer and also the effect it
has had on her, or have you been able to contribute?
Beckie:
I think I have contributed a great deal, but I think the fact that she knew
she could relinquish some of the worrying and some of the stresses, and that
I truly would give my all to all of these other issues that are every bit a
part of this whole episode, yes. I helped her there, and I know it did, but
at the same time I see her strength waning a bit. You said that about having
to hurt them to get to help them, each time she has an episode or a little bit
of a setback, I see her not coming back up with quite the gusto, and I think
emotionally right now she is very fragile, you know, of taking that step to
really actually get on with her life. She hasn't done that quite as well as
I would like her to. Now what she can do, I can't answer you. [laughs]
Dick Foley:
Right.
Beckie:
[laughs] But it's been a very mutual thing--
Dick Foley:
Sure.
Beckie:
--with the strength. It truly has. She would not have
done as well without me and her immediate family, but yet she
has led the way for us. There's just no doubt about it.
Dick Foley:
OK.
Beckie:
And I do think her education and her understanding of
the brain and knowing what might be besetting her before we know
it, because she does hide new deficits from us until she
absolutely--it's usually each time we go to the doctor, every
two months.
Dick Foley:
Oh, I see.
Beckie:
We hear, then, some things that she has experienced
that she has covered. We're all protecting each other, living in
a house together. We live that way.
Dick Foley:
Sure.
Beckie:
And I don't think we can change that, you know, at
this point.
Dick Foley:
Well, to repeat myself, cancer becomes a family
disease. It impacts everyone, and it impacts the relationships
between the people in a household. Carol, we didn't touch on
this, but I'm wondering, you mentioned your younger son who may
have gotten short shift during Matt's illness. How did that
impact the relationship between the two boys?
Carol:
Oh. Well, they are only two years apart, and they were, you know, best buddies
and so, fortunately, my youngest son was just really a trooper and really stuck
by his brother and encouraged him, and he also became part of his treatment.
He would visit the hospital as often as he could, and when he was home, he just
wanted to help. Matt would go for a treatment and Mark would want to be part
of it, and plus the fact that Mark is blessed with a wonderful sense of humor.
[laughs]
Dick Foley:
Right.
Carol:
They both are, and so they've just been best buddies.
And Mark has, I don't believe, ever had an ounce of resentment,
and I just think it's because we were a close-knit family to
begin with, and what affects one affects all of us.
Dick Foley:
Sure. And Ken, in your house with, is it three
children?
Ken:
Yeah.
Dick Foley:
How have relationships changed or evolved,
especially when you were cast into the role of caregiver for a
time, during Joan's illness?
Ken:
Well, I think in many ways we tried to keep the kids' schedules as normal as
possible, but it is a very abnormal situation. I think each one of them at their
own time has had struggles that you can't directly relate to it, and some of
it is just growing up. But some of it I'm sure is from this whole experience
that we went through as a family. I think we've all grown in some ways. The
kids probably have more empathy and more understanding, and probably are bigger
people because of it, in some ways.
Dick Foley:
Mm-hmm.
Carol:
Oh, I agree!
Dick Foley:
Beckie, a question to you, and I know that a lot
of people listening may be waiting for this kind of a response,
but in the role of caregiver, how do you care for yourself?
Beckie:
Oh, I wish I had an answer. [laughs]
Dick Foley:
Mm-hmm.
Beckie:
I find that very difficult to do. I find I have lost
the ability to just sit and do nothing. As you know, all of the
constant going and arranging all these things and scheduling and
doing. As I said earlier, I think I am still working, that is my
outlet, even though it has a little stress of its own. And
certainly it is not an out-of-sight, out-of-mind thing, but I
think Katrina is stronger, and I think she tries to do more with
her disabilities. I just cannot sit and watch her attempt to tie
her shoes but once or twice, and then I reach down and do
it.
Dick Foley:
Yes.
Beckie:
My work is what's best for me and best for her right
now, and all of our family does live right here together. All of
her college friends are here constantly visiting, and that
support just cannot be minimized for anybody.
Dick Foley:
Sure.
Beckie:
Not anywhere.
Dick Foley:
You've provided a great segue to another question
that I'd like to ask, and really any of you can respond to this,
and that is, what do you need from others? Whether it's family
members or friends or church friends, work colleagues, what do
you need from others that would help you in your role as a
caregiver. Anybody?
Leonard:
Yeah, this is Leonard.
Beckie:
Letting me talk about it.
Dick Foley:
OK. Letting you talk about it.
Beckie:
Mm-hmm.
Dick Foley:
Leonard, a comment from you?
Leonard:
Yes. Exactly right. Needing to talk about it, but also just knowing those people
are there if you need them. I just want them to say, "You know, if you need
me, give me a call." Sometimes that can do a world of good right there, just
knowing that they are there.
Dick Foley:
Absolutely.
Carol:
And I have to agree with Beckie. Letting me talk about it and share.
Beckie:
Yeah, the hard treatment may be over, but Katrina's
life will never progress very much.
Carol:
It's forever changed.
Beckie:
OK? And to think that we don't see that every day, there is a grieving process,
in my opinion, that goes with this type of cancer diagnosis, because the life
she knew and had planned for will never be.
Carol:
Oh, sure.
Ken:
Yeah.
Leonard:
Right.
Dick Foley:
Right.
Carol:
Absolutely.
Beckie:
That's not to say that there won't be life--there certainly is, and whatever--but
it is an extremely long, drawn- out grieving process, and I don't see a mother
ever getting over it. Carol, do you? [laughing]
Carol:
No. Not for what could have been.
Dick Foley:
Yeah, I understand.
Carol:
And what you'd hoped for.
Beckie:
Yeah.
Ken:
Yeah.
Dick Foley:
Let me just quickly address the other side of
that question, and then we're going to have to wrap up, but from
these others that we've just been talking about and what they
may bring to you in your role as a caregiver, what don't you
need from other people? What would you rather people not do or
say?
Beckie:
Don't tell me that: "Hey, you should be glad she's alive."
Carol:
Oh, yeah. Oh, yeah.
Dick Foley:
Hmm.
Beckie:
You know, you just got to deal with it. [laughs]
Carol:
Yeah. Or I have had people say, "Well, you know, we know Matthew is--has this
disability, but you don't have to look very far to see someone who's worse off
than you."
Dick Foley:
Right.
Carol:
Well, you don't need someone to tell you that. You
know it, but that doesn't mean you don't grieve for that
loss.
Dick Foley:
Sure.
Carol:
That I don't grieve for the fact that Matthew can't
see and that he's never been able to drive and all this, and he
couldn't play ball anymore, and all those things that you
lose.
Dick Foley:
Mm-hmm.
Carol:
And not that you haven't been rewarded in other
avenues. And you know, there's been a lot of blessings that came
out of it, and the people that you've had the opportunity to
meet that you would not have had that opportunity had this not
happened, and also I believe that it makes you better able to
help others.
Beckie:
And I've been told that, Carol, and I bet you have.
Carol:
Oh, yeah.
Beckie:
I've had friends tell me I've been a bigger help to
them than anyone else as they went through various cancers.
Carol:
Absolutely.
Beckie:
But in my eyes, is it worth me being that little bit
of a better person? No way!
Carol:
No, no.
Dick Foley:
Right.
Beckie:
I haven't found the good yet, out of this situation.
Carol:
Well, I have to say that I have, and that I have had
people that have called me and said, you know--especially
families that have not been affected and this is new to them,
and you know where they're at and you know that terrible fear
that they're feeling. And had this never happened to me or to
Matthew and our family, would I have been able to be around
people that were fighting cancer? Would I have been able to sit-
-I mean, I have had the opportunity since Matthew was diagnosed
and the years that have passed, to help other families and to be
able to talk to them and encourage, and I don't know if I could
have done that.
Dick Foley:
So maybe that's the gift--
Carol:
That's the gift.
Dick Foley:
--that we gain that ability to reach out and
provide comfort to others.
Carol:
And to encourage.
Leonard:
Absolutely.
Dick Foley:
Ken, maybe a last comment from you. Any advice
for the caregiver that we may have missed in our discussion
here?
Ken:
No, you know, what Beckie and Carol were saying: doing things for yourself is
important and working and doing other activities that are important, because
we truly, all of us, do have to take care of ourselves to be able to take care
of the people that we love.
Beckie:
I just pray that I don't look back and regret that I haven't spent all of this
time right with Trina.
Dick Foley:
Hmm.
Beckie:
That is the one thing, my fear. I do think I'm doing
the best thing for her and there, in turn, for myself--
Ken:
Yes.
Beckie:
--which again is best for her.
Ken:
Yep.
Beckie:
But you know, God forbid that I look back and say, "I should have been with
her all of these days." But then someone pointed out to me, when you lose someone
you love, no matter what you've done--
Ken:
Mm-hmm.
Beckie:
--you're going to have some regrets. You can't undo
all those regrets, no matter what you do. So I am just hoping
that it isn't a regret that I have.
Ken:
Well, I have to say, it sounds like you're doing an amazing job.
Beckie:
Well--
Dick Foley:
Absolutely. I would agree with that.
Beckie:
[laughs] Well, thank you.
Dick Foley:
I would also have to comment, as I thank each and
every one of you, this is one of those discussions that we could
continue probably for a long time, but you've all been just
marvelous contributors to this program. We are very grateful
that you would give us your time and share your experience with
us. For our listeners, I would say that if this is your first
experience with the Cancer Survivors Network, I would encourage
you to register as a member, and registration is free. You'll
find a link in the left-hand part of your screen there, and it
appears on every page of the Web site, and do register. This is
bringing our CareCast to a close. I want to remind you that the
recorded portion of this broadcast will be available tomorrow on
the Cancer Survivors Network Web site. In a few weeks, the
written transcript will also be posted as part of our permanent
talk shows and stories library. Also, many of our guests, along
with myself, are members of the Cancer Survivors Network, and
our screen names will be posted with the transcript of the
broadcast. By clicking on the screen names, you can see our
personal Web page and actually send us a message. You, too, can
post a Web page and send and receive messages, participate in
other online activities, and most importantly, connect with each
other when you join the Cancer Survivors Network through our
free organization. We have many active discussion boards on the
Web site, and we invite you to continue this discussion and
connect with each other. And again, let those without computers
know that they can listen to our entire show library toll-free
at 1-877-333-HOPE. Write that number down. There's that word
"hope" again. The number is 1-877-333-HOPE.
As I thank our guests once again, I hope this discussion has
helped you to sort through some of the issues that may be part
of your life as cancer survivors. Huge thanks to all of our
guests--to Leonard, to Beckie, to Ken and to Carol, for their
willingness to share their thoughts and feelings and part of
their lives with us today. I hope some of their experiences will
help you think about and talk about your own concerns in healing
ways. For the American Cancer Society Cancer Survivors Network,
I'm Dick Foley, wishing each of you a great day, today and every
day.
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