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Dave
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David
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Tom
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DICK FOLEY:
Hello and welcome to the American Cancer Society's Cancer Survivors Network.
My name is Dick Foley and I'll be you host today and I'll be talking with three
men from across the country. They are all 46 to 55 years old and they have all
completed their treatments for lymphoma or leukemia. As a cancer survivor myself,
I certainly understand the importance of talking about cancer issues very openly,
and the importance of what we can all do personally and publicly to help each
other. So I look forward to a wonderful conversation with these gentlemen, and
let's get started. I'm going to briefly introduce our three guests and then
we'll open up the discussion as we talk about issues such as anxiety surrounding
checkups and the possibility of recurrence; the blessings that may come from
a cancer experience; having supportive people around you as you're dealing with
cancer; coping with the long-term effects of harsh treatments, and keeping humor
in tough situations.
 One
of our guests tonight is David, from Texas. David's a survivor of acute lymphocytic
cell leukemia. David's 51, he's married, the father of three grown boys. In
1995 he was having some flu- like symptoms and had some previous minor indications,
like bruising and nosebleeds. When he mentioned this to his doctor, they started
doing blood tests and confirmed his diagnosis. He started chemotherapy, went
into remission after about a month, but ended up doing three rounds of chemotherapy.
At that time, they determined he had a hidden, Y-chromosome mutation that was
causing the repetition of recurrence of his cancer, so his only option to recovery
was a bone marrow transplant. After finding the match, he had total body radiation
and high dose chemotherapy to prepare his system for the transplant. David was
in the hospital for a month and then he had additional treatments for another
month, and medication for the following year. And now he has checkups every
four months. Welcome, David.
DAVID:
Thank you.
DICK:
Calling us from Mississippi is Tom,
who is a 49-year-old survivor of cutaneous cell
lymphoma. He'll tell us about that because it's a
rare cancer, Tom is married with two grown
children. In 1997 he had a spot that looked like a
ringworm on his left bicep, about the size of a
dime. A dermatologist took a biopsy and the
results came back determining it was cancer, and
he was sent to another specialist for treatment.
They tried the Puva light system, which didn't
really help, and then they tried mustagen for
about a year and the cancer stabilized but it
didn't take care of it entirely, so he had, again,
total body radiation. This helped the most but not
surprisingly to many, he had some pretty severe
side effects. His treatment has been completed but
he still uses the topical mustagen cream, and his
doctors now consider him 85% in remission.
Finally, our guest from Connecticut is Dave, a 51-
year-old husband and father of 2 boys and 2 girls,
all still living at home. Do I have that right,
Dave?
 DAVE:
Yes, you do, right.
DICK:
All right. Dave's symptoms were
diagnosed actually on Christmas Eve, 1996. We'll
talk about the emotional impact that might have
had for him. He had a lump in his throat, swollen
lymph glands, and he let it go for a month, as it
was really not bothering him and he didn't have
any other symptoms. And then one evening he was
over at a friend's house, the friend happened to
be a doctor, and he told him to get it checked
immediately. He was diagnosed as nonHodgkins
lymphoma, so he had the lumps removed, followed by
chemotherapy and radiation. In September of 1997
he had a CAT scan and was told that he is cancer-
free, always nice words to hear. Dave has also
been a cancer caregiver for his father and he
enjoys talking to groups about his experiences
both as a cancer survivor and as a caregiver.
Gentlemen, welcome to you all. It's nice to have
you with us on the Cancer survivors Network.
David, let me turn to you in Texas first, and
go back to something that I had an opportunity, I
worked in television for a number of years and did
interviews on the air. And people tend to have
very special, poignant, sometimes painful memories
of that moment or that day when they were given
the diagnosis of cancer. Can you remember that
time, when you were told you had acute
leukemia?
DAVID:
Yes, it was really more of a shock than a great memory. But the doctor, his
office had actually called me at work and said they needed to see me after they
had done a blood test, and I said, well, do I need to come right away, and they
said, no why don't we wait until after lunch. So, a little while later my father-in-law
called me and I was mentioning to him that the doctor wanted to see me and he
said, Well, is it serious? And I said, Well, it's probably not life or death
because they said wait until after lunch. So we kind of got a joke out of that.
So went over there and walked in and he was sitting down and he said, You know,
I think you have acute leukemia. And I said, Oh, gosh, what does that mean?
So he began to try to tell me in his limited knowledge of it, as was just a
general practitioner, so things took off from there.
DICK:
So, I suppose for any of us when we
hear those words, because we don't probably fully
understand what they mean, it takes a while for
that to sink in, doesn't it?
DAVID:
Oh, yeah. But you're, I was just in
a different world at that moment when he said
that. You just sort of, you can imagine everything
and think all kinds of strange things. But I
actually came on home from the doctor's office,
and my wife is a school counselor, and she called
me at home and said, "Are you feeling bad? And I
said, Well, yeah, not too good. I didn't want to
tell her at work and upset her that day. So I just
kind of laid here about half the day thinking
about what does that mean, in fact, that word was
kind of hard to say in the early beginning,
"cancer", just sounded like such a bad word.
DICK:
David, did you actually find some
relief when you were able to tell others about it,
beginning, I assume, with your wife, and share
this news?
DAVID
: Yes. As hard as it was, there was
some relief when you share that. There was for me,
but in fact, the more people that knew seemed to
just give me a greater support base. I was talking
to my wife earlier today, and you know, people
want to help you and do what they can so it's
really important to let them do that, I think. It
helps both sides.
DICK:
Oh, absolutely. You know, I work now here in Seattle at a medical center so
I deal with doctors almost on a daily basis. And a lot of them work in the areas
of oncology and radiology, so they treat a great many cancer patients, and I
know from talking with them that doctors face a dilemma. Since patients can
often be so different in just how much they want to know about cancer. How would
you, David, characterize the communication between you and your doctors?
DAVID:
Well, the communication was wonderful, and I was one of those people that didn't,
you know, I thought ignorance was bliss. And I was really not wanting to know
for myself a whole lot about it. My wife was empowered with knowledge, and so
she delved into everything she could find and so I trusted that she knew what
we were doing and the less I knew the better for me, that I didn't have to be
anxious about it or anything else. So I just asked the doctors that you know,
they do what they do best and I would do the best I could. So I really didn't
want to know all the information.
DICK:
I don't think that's uncommon,
though, for a spouse to jump into that role of
caregiver and to want to know want to gather all
the information so she can help you as much as she
can. What a blessing that can be.
DAVID:
Oh, gosh, that was a major
blessing, having her there the whole time.
DICK:
TOM, if we can turn to you down in
Mississippi, this all began for you with a small
lesion on your skin, something that you could have
ignored. What made you go consult a doctor about
it?
TOM:
Well, I had this little lesion and I
said, it itches quite badly, it was a bad itch,
and I decided to use the cortisone over the
counter to try to get rid of it because I felt it
had been possibly a fungus that would do it. I got
over the counter cortisone and used, and about
three weeks later, it disappeared. So about a
month later, it reappeared, and it was a little
larger inside this time so I used cortisone over
the counter, which I had been advised that it
could be by a pharmacist that it's a good over the
counter medicine, and I said, well, I tried that.
I think I need to consult a doctor.
So I went to a dermatologist here in Gulfport,
and he thought that he would try a prescribed
cortisone, Psorcon I believe the pronunciation of
it. Psorcon, and I used that and about three weeks
later, same as before, it disappeared. And about
two months later, it reappeared again, and now in
that spot but yet again in my trunk area, and I
had on my shoulders it was beginning to produce
little itchy spots, which were similar to the
beginning spot that I had.
DICK:
But interestingly enough, the
dermatologist did not spot it as cancer the first
time around, did he?
TOM:
That's correct. And so I said,
Doctor this is not getting any better. And he
said, I can see, and we need to take a biopsy. So
we had a biopsy taken and about a week later he
called me in and he said, You have cancer. And
says, I've been out of school for awhile and I
don't know how to deal with this. I have a
colleague that's just getting out of school and he
may be able to handle this a lot better than me.
So he sent me to this other dermatologist and he
said, Well, we'll try to deal with this with the
Puva which is sort of like a tanning bed but it's
a vertical position.
DICK:
Well, let me go back to when you
were told what it was. You said your doctor didn't
feel he could deal with it effectively. How about
you? How did you deal with it?
TOM:
Okay, since he had little knowledge
of it, what I was really trying to find out, he
said, it's T-cell lymphoma, that's what it's
called. And he said, it was not something that he
knew how to deal with. He didn't have much
knowledge about it and neither did I. So, we were
seeking for more knowledge and somebody that might
have some more knowledge about it, that's what I'm
saying. He sent me to his colleague and he had
some knowledge about it, he said it was a very
rare thing.
DICK:
My goodness.
TOM:
So I felt special!
DICK:
But were you told that there was somebody around within your reach who could
treat this cancer effectively?
TOM:
Yes, there was a lady in I believe
it was, Louisiana, that was dealing with patients
that had serious skin problems. And she might be
the one to take care of the problem. But we was
gonna try, he I think he had contact her and she
told him to try the Puva and all that first. And
then you know if it got worse, then send me to
her.
DICK:
And the Puva is a light system
that just, your skin is exposed to these rays?
TOM:
That's correct. You take a couple
tablets of oxyroid and that is supposed to make
the skin more sensitive to the light, which it
should, in most cases it would kill the cells by
itself, but this did not do it for me. I was
trying to learn a lot about it, I'd go online, the
internet and try to find out as much as I could,
and like I say, this is such a rare thing, I was
getting the same thing over and over, which was
very little information.
DICK:
Umhum. But you did want to
know?
TOM:
I definitely wanted to know. And it
was something that me and my wife and the rest of
my family was trying to deal with, we had no
knowledge of it.
DICK:
Now, knowing these two things, one,
that you had a rare form of cancer and two, that
the Puva light system didn't seem to be working
for you, how did you avoid getting discouraged? Or
did you?
TOM:
First of all, I have a deep faith
in God, and so does my family and my friends and
fellow church members and fellow workers, and
everybody was saying, let us pray about it? Let us
seek our counseling and seek God's help on this,
and that's what we did, and I've always been an
upbeat person. I'm the laugh of the party whenever
there's a party, you know, and that helps out. I
believe that modern technology is beginning to
learn more about different ailments and how to
treat 'em. Other people are getting well from
different types of cancer, so I may be a first
with this.
DICK:
Well, I think probably our other
two guests would agree that an optimistic attitude
certainly is an asset as we go through these
treatments. But if you were to stack up all the
things that were helpful to you as you went
through this cancer battle, Tom, would you put
faith pretty close to the top of the list?
TOM:
That would BE the top.
DICK:
The top. You'd just put your
reliance in God and that gave you peace of mind
throughout this thing?
TOM:
Yes, it did.
DICK:
I want to come back to you again in a minute and find out more about your course
of treatment, because the light didn't do it so you had to look for other things.
But I want to get our friend from Hamden, Connecticut. This is Dave, from Connecticut.
And looking back, Dave, you actually had some symptoms that you chose to ignore
for awhile. Tell us about that.
DAVE:
First of all, if I could say something I'd like to tell Tom one thing, my father,
who I was, Dick had said I was a caregiver for, had T-cell lymphoma. And it
was diagnosed in 90, and I know what you've been going through with the Puva
light. I used to be his caregiver and take him with the mustard and I used to
have to apply it to him you know to take on for him. So, I commend you.
DICK:
Well, Dave, as long as you have
begun talking about that, because that's a whole
different subject, you know, kept putting you in
the role of caregiver. Tell us more about that,
and you know, maybe we can end up by asking you
which you felt was more difficult. Was it really
tough for you to see your dad going through
this?
DAVE:
It was very tough. I know I started
out with the Puva and then he started getting sick
with the pills that they would give him to
sensitize the skin. So then they decided to do
total body radiation and I was taking him down
every day for I forget, like 45 treatments or
something. And I was watching him and I think that
years ago the generation before us, like our
fathers and our mothers, in other words, were more
so keeping things in and he wouldn't show as much.
But I started seeing him, taking care of him, was
very rewarding to me but it was draining. And I
felt so bad for him. The cracks that he had on his
skin was incredible, big cracks, and I just saw
what he was going through.
DICK:
How did he tolerate the
radiation?
DAVE:
He was incredible. After going
through radiation with myself, which I thought was
harder than my chemo, I mean, draining-wise, for
the entire, I don't know how he did it, because he
did total body. And um, now at the time I really
didn't understand cancer much cause like you say I
had four children I was very involved with them. I
was trying to take care of him, and working two
jobs and doing all that.
So I was trying to take care of him and what
was really draining was the visiting nurse would
put the mustard apply the mustard in the morning.
And I would trust my mother to take them off wash
them off at night, I'm sure you know about that,
Tom (who says, "sure"). So I would go down and
luckily a lived about a mile from him and I would
go down and he would at the time he was in his
late seventies and he just didn't want to be
bothered by it, at that time. This was about five
years he was going through different treatments.
It would go away and come back and so this was
started, it was working, but I would have to go
down and wash him down, I would have to make sure
to take it all down. Then I would help shave. It
was very draining on me as far as the time I
didn't want to show him my emotions. So between
leaving his house, the time, the mile or so coming
home, I was like maybe it would just bothering me
so much and it would come back and it was nothing.
I wanted to show like it wasn't bothering me.
DICK:
He needed your strength at the
time...
DAVE:
He needed my strength, and that was
just so hard knowing that it bothered him that I
had to do this, but he just couldn't do it and I
did it and my mother ---- I didn't want --- lest
she forgot to take it off. So, but, and I didn't
know I was a caregiver until after I became a
cancer survivor myself...
DICK:
But at the time you were just
doing what you felt was the right thing to do.
DAVE:
I had to do.
DICK:
Yeah. Do you think in the long run,
Dave, that your experience with your dad helped to
prepare you to do better with your own cancer
experience?
DAVE:
Well, I don't really know. I don't
know if you can really be prepared for that. It
definitely made me a better man, I think.
DICK:
Um hum. Let's go back then to my original question because you had a symptom
that you thought wasn't very significant, so you let it go for awhile.
DAVE:
Exactly right.
DICK:
What was the symptom?
DAVE:
I was just sitting at my table
after come home from my second job, actually, and
I was stretching and I felt my neck and there was
a lump. It didn't hurt. I said to my wife, I feel
like I have swollen glands, but I haven't had them
since I was in my twenties and had mono. At the
time, this was like, thirty years ago, and I said,
But they don't hurt. So I did the next day I woke
up and I shaved like I shave every morning. And
when I shaved over it it was such a drastic bump
there that I said, well, it came out after I
shaved that morning previous, and so there was no
pain I said, I felt great, I wasn't sick. So I
just let it go.
DICK:
So, how much further down the
line did you have this visit with your doctor friend?
DAVE:
Well, it was about a month and I
was just over at his house one night and then we
were leaving. And he came outside to my car and I
said, You know, and I asked him, and I never asked
him questions about my health, I gotta ask you
this, what do you think this is? He called me the
next day. I didn't go because then I said well it
was near Christmas, was beginning of December, and
I thought -- holidays, at the time I was really
busy working, so he called me the following night
and made sure that I went to the doctor.
DICK:
So he stayed after you to
go.
DAVE:
Right. So when he called me up the
following day and said how come you didn't go to
the doctor? I said, Paul, I said, I didn't feel
like it. He insists that I went, and then he
scared me. So I went the following day. Nine days
later I was on the operating table and I had them
removed.
DICK:
Well, tell us about the experience,
Dave, when you learned what it was. Because you'd
been through it with your father, so you'd had a
family experience with cancer. What was your own
personal experience dealing with that
diagnosis?
DAVE:
It was horrible. I, after I was
coming out of recovery of my operation, my doctor
said, we think it could be lymphoma but there's
still a chance it's not. But they had to wait for
the pathology report. So I was waiting for this
call to come. To see what it was. In the meantime,
it was Christmas Eve. I had at the time I had out
of my four children, three of them were away at
college. They were all home, everybody was home
for the holidays for the semester break, so I was
waiting for the call and the call came. And my
internist, which I think was horrible, called me
on the phone and told me he got the pathology
report back that it was nonHodgkins lymphoma and
it's an unusual kind of lymphoma and he told me it
was an unusual kind of cancer.
DICK:
So you got the word over the
phone.
DAVE:
Over the phone.
DICK:
And I assume that that didn't
feel right to you.
DAVE:
Let me tell you, I was standing up
at the time and I fell on the floor. It was like
somebody stabbed me.
DICK:
You know what I remember, Dave,
when I was told about my cancer, I remember taking
stock of my life. You know, I had two children and
I thought about them, what's gonna happen with
them. I think for a lot of people, still, even
with all the knowledge we have about cancer,
somehow that diagnosis often equates to a death
sentence. Does it feel that way to you?
DAVE:
Sure does. Even though I went through it with my father, I still didn't understand
what cancer was. I mean I'd seen it, what had happened to him, I saw everything,
but I just kept going on with my life. And you really don't feel like something,
I mean, you felt good and then, that was the biggest part, I mean, outside of
the operation, I felt great. So when he told me and then these were his words,
this is what he told me: "I have this kind of follicular - -- cell lymphoma,
Non Hodgkin's lymphoma". He said I had to call the oncologist I called the oncologist
I'm gonna refer you to cause I don't know what it is myself, he told me it was
an unusual kind." He says he wished it was Hodgkin's because we know Hodgkin's
now we know they are doing well with it, it's not so... that was it. And then
he hung up.
DICK:
Yikes.
DAVE:
So, automatically I felt unusual
meant, that's a death sentence right there. And it
was just, my whole world crumbled, right then.
DICK:
How did you go about sharing
the news with your wife and children?
DAVE:
They were there. They were in the
kitchen, they saw me on the floor, they knew what
was happening. They all knew I was waiting for
this call, anyhow. So, but I still didn't break
down or nothing until we all went to midnight
Mass. It was Christmas Eve Mass, we were all in
church, we were all in a pew, five of, my wife and
our four children. And then they shut the lights
off so you could sing Silent Night, and then it
hit me, that I'm not gonna see my children. And
that was it. So..
DICK:
Boy, those are rough moments.
Rough moments to get through.
DAVE:
Very rough. But it took me a
couple weeks to get myself through and then I'll
tell you how I did it.
DICK:
Yeah. Well, now, your treatment, as you have begun to tell us, involved surgery
initially, to remove some of these lumps that were appearing, the lymph nodes,
and then both chemo and radiation?
DAVE:
Right. I went through an aggressive chemo and then after that I went through
radiation.
DICK:
What was the roughest part for
you?
DAVE:
Well, the chemo was, for my kind,
because I had four different kinds of chemo in a
cocktail, and they all had side effects. I think
the roughest part was probably was the chemo,
because you lose all your hair. And then, even
though, first of all I should say, I will tell you
that I was very blessed and caught mine at a very
early stage and that's why I didn't get the side
effects, I mean, the symptoms like night sweats
and fatigue and loss of appetite. I caught mine
early. So, I didn't feel that sickness first. So
it was very hard to say, Jeez I'm doing through
this chemo and I don't understand it but I have
something that's very aggressive, could kill you,
you know, I'm not gonna make it if I don't go
through the treatment. But then the hardest part
was when you lose your hair, which was exactly,
they told me ten days and ten days all my hair was
gone. So it was just like that. So when you look
in the mirror, then you say, Wow, I am sick. I am
going through something. So the chemo as far as
that goes, but I think, because I was on high
doses of prednisone too, I didn't have the marked
fatigue like I did when I started radiation. I was
very fatigued.
DICK:
Let me touch on one point that I
have heard from two of you, at least, and Tom,
this may be true in your case, as well, but you
have emphasized the importance of early detection,
finding these cancers early. I guess because I'm
now twenty, almost thirty years, down the road
from my first diagnosis. I've come around to
feeling that the most important thing that cancer
survivors, that the four of us can do for others
and those around us, is to encourage them to get
the proper screenings. So that if in fact, cancer
is present, it can be found early. Would you agree
with that, all of you?
TOM:
I would definitely agree with that.
Early detection I would say would be the plus to
all of it, you know.
DICK:
You know I read just recently that
the survival rate for my kind of cancer, which was
colon, with early detection, are well up into the
ninetieth percentile. And the screening is there,
we just have to encourage more of us to get the
screening. Let me jump now, Dave, back to your
point about chemo and losing hair, because David,
you in Texas have an kind of interesting story
about preparing to lose your hair. I think most of
us know enough about the effects of chemotherapy
that we know that hair loss is part of it. But
tell us your story.
DAVID:
Well I was in Baylor in Dallas and of course that's a training hospital. And
there were some very well-equipped young doctors working with me and learning.
And I knew my hair was gonna fall out, so I asked my wife. I said, "why don't
you go ahead and shave my head so that, I was curious to see what it would look
like. Anyway, but, so it wouldn't fall out in the bed and what have you. So
we got in the bathroom and she had an electric shaver and she just went down
the middle and kind of had one side completely bald and the doctor walked in
and said, where you guys at? And we said, we're back here in the bathroom. And
as he walked through the door, he said, "Oh, no! I forgot to tell you! This
is the kind of chemo where you don't lose your hair!" He thought that was a
wonderful joke. It's good to have some humor when you're going through all the
things. So that was kind of good.
DICK:
So how do you hang on to that humor, though David, when you are going through
some pretty darn rough stuff?
DAVID:
I don't know. I think we all find strength that we were unaware of. I know in
my case I'd heard this Bible story about these footprints in the sand, where
God was walking with you and then all of a sudden there's one set of footprints
and you wonder why God left you, and he said, No, I'm carrying you. And I can
remember one moment, after so much chemotherapy and radiation that you know,
you just felt so bad at that moment, I remember saying, God, I'm ready for one
set of footprints here. I don't think I can do it any more by my, you know,
I can't do any of it anymore. I don't know, you drag up some strength that you
didn't know you had I believe.
DICK:
We in Seattle, of course, are
blessed to have the Fred Hutchinson Cancer
Research Center here, where bone marrow
transplantation was actually pioneered. But this,
finally, because of your many recurrences, David,
became the only remaining option for you. Is that
correct?
DAVID:
That is correct. And I was in
remission again, I think the third time and that's
when they said you know, this little thing, it
always looks like we've wiped it out. But for some
reason it hides and it hides very well, and when
it comes back, it will come back with a fury. And
as we went down to do the bone marrow transplant,
which we had scheduled, once I found a donor, and
by the way, he's from Chehalis, Washington, right
in your neighborhood, he's a fire captain there.
Anyway, I told my wife, I really don't think I
have cancer anymore, I feel like I'm healed,
they've taken care of it, but I guess I'll go
ahead with this because that's the protocol. So
they did come back and my wife said to the doctor,
she told them, he thinks he's cured and what have
you. And he came back in the room and assured me
that we did the right thing because as they were
doing blood work they saw a recurrence of the
blasto again. So we were very fortunate to go
ahead and have that scheduled at the moment that
we did do it. So, that was a plus.
DICK:
But that is arguably the most
rigorous treatment around for these blood-related
cancers. How did you maintain a positive attitude
as you prepared for the transplant? Because, you
go through these horrendous preparation steps.
DAVID:
You know, that's a question I can't
answer. I had a lot of support, and I was really
amazed. I've always been sort of a loner, and not
too much with groups of people, one thing and
another, and to see the neighbors and the
community, our church, you know, the support that
I had was vital to keeping that going, I think.
Like Tom said, faith is very, very important. And
I know that God and Baylor got me to this point,
but you know, the children from the school where
my wife works were sending me baskets of letters
and cards and you know, it was just an outpouring
of people that I didn't really realize was there.
I mean, it has really been an eye opener for me
and this is an odd thing to say, but I'm almost
glad that I had this opportunity to change my life
and see things from another viewpoint. You know, I
just, small things are very important now you
know?
DICK:
You know, David, that doesn't
surprise me any more. It did when I first heard
it, that people say they almost see their cancer
experience as a blessing for how it has changed
their lives. Now I understand it.
DAVID:
That's great. Yeah, it's just, you feel the reality of your blessings every
day. I mean, small things, being able to get up and watch the sunrise or the
sunset and see my grandson do things. You know, we were truly blessed when we're
here, so I am really fortunate in that fact.
DICK:
Isn't that the truth. Live each
day. Tom, let's come back to you just to explore
this whole mustagen thing. We've talked about it
with both Dave's father and then this is something
that was tried with you, too. What's it supposed
to do for you?
TOM:
Actually it is supposed to kill
those cells. I put mine on overnight and washed it
off in the morning, and that was total body. And
now I'm using it on spots that have
reappeared.
DICK:
But how long did it take you Tom, the first time you went through this routine
with the mustagen, to realize that it was not doing all you hoped it would do?
TOM:
I was kind of giving it the benefit
of the doubt. The doctors say it's within a month
I should see changes. And after a month's time,
that's what I gauged it by, that it really wasn't
doing what it was planned to do. Now, I was saying
is this the right batch? Because it is a mixture,
mustard gas with emollient something similar to
Vaseline. I said well, maybe this batch was a
little weak. And now I look, I got about fifteen
different one-pound jars. I say, well, I haven't
got the right batch yet.
DICK:
Was it an unpleasant thing to
do?
TOM:
Very. It can get that way. First of
all, you think about survival, and you say, okay
if I can get this thing to stop, to stop this
itching, the wife would tell me, You're scratching
all the time, it's got to be something that the
doctor can prescribe. I say, well, right now
nothing topical, maybe something oral. And it can
get frustrating when you haven't had you know a
mixture, you try to get it in the area, a place
because you have to have help when you're putting
it on total body. Sometimes you say, my wife may
be doing something, and you don't want to get her
away from what she's doing to help you out. I know
she don't mind, or didn't mind, but sometimes it
could to me feel a little bothersome. That was
something like I say support, when you're going
through anything, I feel that if there is support
from someone. Some group or organization that's
showing some of care and concern about your
situation, I believe that that is a motivator or
inspirator, that can really keep you going and
always have hope.
DICK:
So, when you weren't getting the
upper hand, though, on this lymphoma, what was the
next step? Was that when you turned to the total
body radiation?
TOM:
That's correct.
DICK:
And how long did that
take?
TOM:
We had approximately seven weeks 22
treatments, and it was a treatment in the morning
and a treatment in the afternoon, about fifteen
minute sessions per treatment.
DICK:
How did you tolerate it?
TOM:
Well, for the first few days it was
as if nothing was happening. I mean I felt a
little sting. I say, well, when is this gonna
start taking effect? The doctor says, well, it
will as the fifth or sixth treatment, you'll
probably notice some difference. And it did happen
that way. As far as when my skin start drying and
cracking, that was a different story, because
putting on clothes and stuff and you got this dry
skin that's cracked and still attached to your
body, and it's snagging and you got pain. So that
was really a test of my strength and endurance.
And then you know, you got immediate family,
friends and family that come by to see you and
I was off of work for three months and during
those treatments and after, and it was, I looked
in the mirror I think around the third week and it
did not look like me. I mean one morning I got up
to go to the rest room and I looked in the mirror
and I guess I was kind of still in a daze, and my
mind was saying, Who is that? It was, it was kind
of, it was a different side I'm not able to really
explain exactly how I felt.
But I always felt that I was walking and I was
getting up and I was doing things for myself in a
certain instance. But when my feet started to
swell and I could hardly walk, I had to walk on
the side of my feet, cause it's just too painful
to put my feet flat on the floor, and my body
began to swell. I got to where mucous was just
foaming constantly and my vision was kind of
getting blurred, and my hair started falling out
about the fourth treatment, I could take my hand
and it would just roll off my head. This is tough
and I need some help. Through prayer and the
support of different people, it really made a
difference.
DICK:
Did you find, though, Tom, that you
reached down inside yourself and found strength
that you might not even have known was there?
TOM:
Yes, I did. I did. Because when I
saw myself and then had to recognize, well, this
is you, it's something you can't turn back, it's
something you've got to deal with, and you say,
well, if I give up, it won't get any better. But
if I keep trying, it might.
DICK:
So it's worth keeping on fighting.
I'm wondering if all three of you could comment on
this. Do you think, as men, that you may have
reacted differently to diagnosis and treatment,
thinking that you need to be strong, maybe strong
and silent, to protect your wives and families
from what you were going through? At least
emotionally.
DAVE:
I think it was very hard, well let me tell you. I had three of my children went
back to school when I started my treatment, it was in January.
DICK:
They went back to college,
away from your hometown.
DAVE:
Away from my hometown. It was three
away at school. And I had my youngest, my little
guy, my youngest son, he was home, he was in high
school, just started high school at the time. So
that was good. At least they didn't see me go
through the treatment and so, and then, but it was
hard for me to see my wife going to work and I'm
staying home. --- where I worked, for 28 years I
was working where I worked. I'd never really been
sick. I'd been blessed where I didn't have to and
I always went to work every day. So I think it was
hard, I'm sorry, I should have said that through
my treatment I didn't work. I was like Tom, I was
home for almost four months and then I started
like half days when I went through my radiation.
But it was hard seeing that. You know, being home
during the day, my wife worked and so...I did find
that all I did used to keep in when it was my
father, being a caregiver, and how I kept
everything in and I think the stress, because at
the time, my mother was getting sick, too, had
Parkinson's', and I'm an only child, so I really
went through a lot of stress with that.
DICK:
So have you learned not to do
that? Have you learned to express yourself?
DAVE:
Right. That's the way I was B.C.
Before Cancer, I always kept everything in. Now, I
really, I'm very sensitive, I show my emotions
even with my children. I'm very involved with
support groups and all, and so I even show my
emotions there, and I'm not, and I feel that this
is manly or whatever to do that. And I like to
talk about that for the American Cancer Society, I
do talk about that.
DICK:
I know that you do and I want
to come back to that.
DAVE:
Yeah, okay, all right, I'm
sorry, I jumped ahead.
DICK:
That's okay. Tom, tell us what
is the state of your health today?
TOM:
As of today I have begun a new
treatment called accutane. And the doctor told me
that it was, we tried some of the harsh things on
the outside, let's try it from the inside. I feel
like this is an experimental thing, you know, but
I can have hope that this is something that will
work. And the accutane is kind of, I was kind of
reluctant when I saw some of the possible side
effects. But gave it some thought, and said, Well,
if I do nothing, I can look to getting worse, but
if I do something, there's a chance there would be
some changes. Good changes.
DICK:
So you're gonna remain hopeful
and positive.
TOM:
That's correct.
DICK:
Through all of this, can you point
to one lesson that you've learned that is the most
valuable?
TOM:
Yes. Never take life and some of
the things we say are small, for granted. Never
take anyone or anything for granted. Don't make
small of anything. Try to take life one day at a
time, one minute, one hour, and really think about
how we are using our time, are we using just for
ourselves or are we using it to help others? And
for support, I'm with a support group here in
Mississippi, and we have traveled to help other
institutions start support groups, because they've
come and seen what it's all about. Whenever there
is a show of love and concern to other people,
then I feel like that's part of the process. You
never feel with this illness, a disease, you
always have a better quality of life by just being
part of a support group, helping others maybe hang
on a little longer.
DICK:
I'm sure that the support you
provide others, Tom, as the courageous survivor
that you are, means a great deal to them. David,
you have been through literally an experience of a
lifetime. How has this changed you?
DAVID:
Well, I think very similar to Tom and what he was reflecting on, but I think
that I have a new awareness of human kindness and mankind at this point. I don't
want to sound like, you know, a philosopher or something, but you know it's
really made me realize every day, still five years later, that everything is
such a great blessing. You know, I'm just happy to be here, and I have some
side effects that you know I try not to talk about, and whenever I do, if I'm
speaking with someone I say, You know, I'm just glad to be here to complain.
And going back just a moment, I was just
thinking, when I was going into this thing with
the bone marrow transplant and I would go to the
clinic there and getting ready. And before I went
in for my hospital stay, seeing some people that
have been through this, that look regular again,
that looked happy again, looked healthy, was
really an inspiration, I think. And that's what I
try to do when I go back to Baylor each time. You
know you sit there and you feel like you're taking
up space because you're not sick like everyone
that's in there with you. So I try to visit with
them and let them know that there's a light at the
end of that tunnel, and it seems to really help
other people. So. You know, there's so many great
things that have changed in my life that it's hard
to pinpoint the one thing...
DICK:
It's sometimes hard to put them into words. But I know that you know one of
the really central purposes of this program is to suggest perhaps to those people
who are newly diagnosed and just beginning, they're just at the front end of
the road that you have traveled such a long distance. To help them see that
there is hope, that there could be light at the end of the tunnel, and to keep
them focused and positive and resolute like all of you have been. Dave in Connecticut,
after your cancer experience, you did one other thing you probably didn't think
you could do, and it involved 26 miles. Tell us about that.
DAVE:
Yeah. Well, I did it for the leukemia lymphoma society team in training. I decided,
I set a goal, I transferred my two or three miles away, I was gonna walk-run
a marathon. And I did it. I did it out San Diego, I raised money (Dick says,
A lot more than you thought you were gonna raise, too!) A lot more. And it was
incredible. There were 6500 of us and out of the 22,000 runners and walkers,
I think there were 6500 from the Team in Training. So out of the 6500 we raised
$4 million, for that one marathon, and I tell you it happened to be an incredible
experience.
DICK:
Tell us about the woman, Dave,
that you met at about the 17-mile mark.
DAVE:
Oh, I did, I met somebody, my
daughter had made a shirt for me to wear, I asked
her to, with all my heroes in memory of the heroes
that I had met through my support groups and
through my treatment and all that, that did not
make it. I had "In Memory of my Heroes" on the
front of my shirt and on the back, my daughter
made "In Honor of the Heroes with Leukemia and
Lymphoma and Hodgkin's who are still living or
they are survivors. And then on the top she put,
"I am a Survivor", so in the meantime my oldest
boy went out to the race with me, because he
didn't want me doing it alone. So this woman came
in the beginning of the race that she was a bone
marrow transplant survivor, she had leukemia, had
a bout with leukemia. And she had her bone marrow
transplant at Fred Hutch up in Seattle at the
medical center, and she had it done in 96 and she
was doing the marathon.
And I was, and in the meantime throughout the
race I was ahead of her and then we met and all so
at 17 miles. She thought she couldn't finish and I
told her she could finish and she told me to go on
and we went on. And in the meantime I looked for
her at the end, I didn't see her, I couldn't find
her and so I had taken up the camera with me and I
was taking pictures, we took pictures along the
way, and I happened to have a picture of her. So I
came back to Connecticut, she was from California,
I talked about her, I didn't know her first name,
and that she was another hero of mine that she did
the race as a bone marrow transplant survivor. So
two months go by, it was a weekend in August, it's
been exactly two months, the phone rings here and
she calls me. And she called me up and said, Dave,
and told me who she was, and automatically, I got
tears in my eyes that this woman would get a hold
of me.
DICK:
She tracked you down with only
a first name?
DAVE:
Only a first name. And so all she
knew was I was there with my son from Connecticut,
that's all she knew, so she called me up and she
told me that "I had to get a hold of you. I was
very touched that she was inspired by me so much
that you kept thinking about me every day since
the marathon, that she only finished because of
me. She said the words I gave her at 17 miles. I
says, I can't believe it, cause I'd have
remembered that. And so she told me that she
finished, then I remembered. And she tracked me
down. I told her that her and I have a reason to
finish and that if she, she said she'd had it, she
was gonna quit, and she was cramping and she
couldn't. So.
DICK:
You used the word, Dave it is
inspiration, but I would apply it to all of you
because that's what you show to the rest of
us.
DAVE:
It was incredible.
DICK:
You set really a heck of an
example. And David Texas, I know you've maintained
a great relationship with the fellow that donated
the marrow to you.
DAVID:
Yes, it's amazing.
DICK:
Yeah, the fella up here in
Chehalis.
DAVID:
Yes, we're best friends. We call,
we're brothers. We have identical everything. It's
incredible.
DICK:
That's a real bond, isn't
it?
DAVID:
That's a great bond.
DICK:
Well, inspiration and courage and
resolve and faith, all those things come to mind
as we sort of wrap up our program today. But our
hope is that this discussion has helped our
listeners sort through some of the issues that may
be part of their lives, especially as they begin,
if they're at the beginning of dealing with
cancer. I want to extend a huge thanks to Dave
Connecticut, to Tom own in Mississippi and David
Texas for their willingness to share their
thoughts and their feelings and part of their
lives with us today. I hope that some of these
experiences will help you think about and talk
about your own concerns in positive ways. I
encourage all of you who listen to tune in to
other discussions that we have available on the
website, or by telephone. And for the American
Cancer Society's Cancer Survivors Network, I'm
Dick Foley in Seattle, wishing each of you a great
day, every day.
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(4 minutes 21 seconds)
