Talk Shows &
Stories : After
Treatment and Beyond : Lymphoma/Leukemia, Male 55+, After Treatment
Lymphoma/Leukemia, Male 55+, After Treatment
Recorded February 6, 2002
Welcome and Participant Introductions
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Dick Foley:
Hello and welcome to the American Cancer Society's Cancer Survivors Network.
I'm Dick Foley, your host, and today I'll be talking to three men in their
mid-50's or older who have completed their treatments for lymphoma. As a
cancer survivor myself, I am very pleased to be your host for today's
conversation as we talk about topics such as coping with the side effects of
initial cancer treatments when you're a long-time survivor; issues of health
insurance for long-term cancer survivors; having to retire or alter your
lifestyle because of cancer-related health problems; dealing with feelings of
failure when you're unable to find ways of regaining your health; and the
importance of telling your story by letting people know just what you've been
through.
 We have
three guests today, beginning with Mitchell, who is a 54-year-old
cancer survivor. Mitchell is married and comes from the state of Georgia.
Mitchell, welcome to the show.
Mitchell:
Thank you. I appreciate it. It's great to be here, Dick.
Dick Foley:
Now, I understand that when you were in college in 1973, which by the way was
the same year as my diagnosis.
Mitchell:
[laughing] I know.
Dick Foley:
You developed a persistent sore throat, and the school nurse gave you some
medication but that didn't seem to help. You sensed that something wasn't
right with your body and so you went on to the doctor. Tests showed that you
had Hodgkin's lymphoma. Then, initially, you were treated with radiation.
The lymph nodes on your arm became very swollen and had to be removed. Then
that was followed by six rounds of chemotherapy, which at the time, was an
experimental treatment. The good news is, you've been cancer-free since then.
It's great to have you with us on today's show, Mitchell.
Mitchell:
Well, I appreciate it, and since you've been diagnosed around the same time,
certainly congratulations to you for hanging in there and surviving also.
Dick Foley:
Absolutely. And as one of our guests will perhaps say again in a moment, it
is great to be alive [laughing].
Mitchell:
It is without a doubt.
Dick Foley:
Our next guest today is Bill. Bill is 65 years old. He is a cancer survivor
from Illinois. Bill is married, has five adult children. We're glad to have
you with us today as well, Bill.
Bill:
I've got six kids.
Dick Foley:
Six kids!
Bill:
Yeah, I've got five boys and one girl.
Dick Foley:
I didn't give you quite enough credit.
Bill:
Well, that's all right.
Dick Foley:
That's a fabulous family.
Bill:
Ha-ha! Well, we think so.
Dick Foley:
Now, early in 2000 you found yourself losing weight, and thought at first that
it was due to stress. This continued over a period of some months and you
then went to a doctor, had a series of tests and were eventually diagnosed
with non-Hodgkin's lymphoma. Your treatment, as we understand it, consisted
of a surgery, a small bowel tumorectomy, along with a resection. Also, you
had a port put into your body. And then you began the first four rounds of
what is called CHOP chemotherapy, but it was delayed because it interfered
with the healing from your surgery. So once the surgery had healed, you
completed your chemo treatment and have now been in remission since February
of 2001, about a year, is that right?
Bill:
That's correct.
Dick Foley:
Great to have you with us today, Bill.
Bill:
Well, it's really good to be here, and I do enjoy the recovery process. I
heard a little earlier, and I'm kind of interested in knowing what the
positive effects were with the gentleman that was involved with the Cancer
Survivors group, because I never had that luxury. So I had to discover all
the side effects then, all the downers and all the depression and
discouragement, etc. weakness on my own. It would have been a lot easier had
I been more educated as to what to anticipate.
Dick Foley:
Well, of course it's our hope, Bill, that the program that we're doing today
and others like it will eliminate that situation for lots and lots of other
people. They can join us on the Cancer Survivors Network and discover some of
these things without having to go through this terrible, lonely learning
process along the way.
Bill:
Good!
Dick Foley:
I want to also welcome to today's show Nick, who is a 59-year-old cancer
survivor now living in the state of Florida. Nick is married with two adult
children. Did I give you enough children, Nick?
Nick:
That's enough, thank you!
[laughter]
Dick Foley:
Nice to have you with us on the program today.
Nick:
Oh, it's my pleasure certainly to be here. And being ten years out now from
the bone marrow transplant that I had, it didn't seem--time seems to distance
me from the original cancer. But being part of a support group and being part
of this program previously, it has helped me to understand and to live with
the thought of cancer that could potentially reoccur at any time. But it
helps to deal with that particular thinking, and sometimes it's difficult to
deal with it.
Dick Foley:
Yeah.
Nick:
I'm still here and enjoying life, and that's the important thing that I've
come to value, certainly.
Dick Foley:
Well, probably most of us discover that cancer is an experience that changes
our perspectives, maybe causes us to realign some of our values in life.
Nick:
Very much so.
Dick Foley:
For that reason, though it surprises some people, people look back on the
cancer experience as having some very definite positive aspects about it.
Nick:
I certainly agree with that. As has been mentioned, I was part of a cancer
support group for eight years, and the people, the heroes that I met in that
process, some who are not here today just were so significant in my life. To
see how people dealt with this particular situation under the most extreme
conditions of medicine and what happened to them with their families. Many
become separated and divorced.
Dick Foley:
Yes.
Nick:
It was just such an experience that you hate to say that cancer is a rewarding
experience. But the people I met and the rewards of being part of this
process, I can't say enough about it.
Dick Foley:
I have met some of those heroes myself, Nick, and I have been humbled by
them.
Nick:
Amazing!
Dick Foley:
Yeah.
Nick:
It's absolutely amazing how people get through this process and some of them
by themselves. Which is where the support group really came in, and was a
major part of my life and my wife's life for the many years that I lived in
Connecticut while I was going through the process.
Dick Foley:
I want to, Nick, just quickly review your cancer history so our listeners will
know exactly what you've been through. Your first symptoms were swollen lymph
nodes.
Nick:
Correct.
Dick Foley:
And even though you didn't feel too badly, you went to see your doctor.
Tests were done over a few months, but the results, at least at first, were
inconclusive.
Nick:
Correct.
Dick Foley:
And then finally, after persisting with your doctors, you had a biopsy which
showed non-Hodgkin's lymphoma and that was--was that 1989?
Nick:
Yes.
Dick Foley:
Initially, then your treatment was four courses of what we have referred to
before, the CHOP chemo, which didn't really appear to work.
Nick:
Correct.
Dick Foley:
Adriamycin® was then added, and you went into remission, but then
unfortunately, seven months later you had a recurrence.
Nick:
Correct.
Dick Foley:
Then your condition was monitored for a year, but the cancer kept advancing.
A decision was made then to give you a bone marrow transplant. Four months
after that transplant you took an experimental monoclonal antibody drug, and
thankfully you have been cancer-free ever since.
Nick:
Yes. That is correct.
Dick Foley:
There's the good news. [laughs] And welcome to today's show.
Nick:
Thank you very much. It's a pleasure to be here certainly.
Facing Long-Term Side Effects: Sterility, Fatigue and Depression
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Dick Foley:
Let's turn first, gentlemen, if we may to the subject of side effects because
I think sometimes those sneak up on cancer patients, and probably a lot of
physicians could do a better job of preparing us for that. Many times,
doctors don't discuss with their patients the potential side effects of
treatment and patients are caught by surprise when these side effects occur.
I would like for each of you to talk a little bit about some of the side
effects you yourselves have experienced, and some of the things you did to
cope with them. And Mitchell, if you wouldn't mind, let's begin with you.
 Mitchell:
Well, my diagnosis and treatment was quite a few years ago, 28 years ago.
They really didn't know a whole lot of--they didn't know the drugs, the
protocols were all experimental, the drugs they were using, the combination of
drugs, so they didn't really know some of the side effects. Certainly
probably weren't in the position to warn me. I feel they were doing the best
they could at the time. But one of the side effects that I've had, and now
they do address it, and that's from the chemotherapy treatment; I'm 54 years
old, been married 28 years and we don't have any children. And that's one of
the side effects, I don't have any sperm. The drugs sort of put a little
hindrance on that thing.
Dick Foley:
I've heard that mentioned before in connection with--what was the age when you
were being treated for cancer?
Mitchell:
I was 25.
Dick Foley:
Was there any suggestion that these chemo drugs might bring this about?
Mitchell:
No, there wasn't. I can remember, I was in college, going to a class, and I'd
feel like I had to go to the bathroom and--felt like it was a bladder
infection. Then when they did the test, they told me that you're probably not
going to be able to produce any sperm. I tried several years after getting
sperm counts done and just kept coming up zero.
Dick Foley:
Yeah.
Mitchell:
And so at this particular point in my life, well if we don't have any
children, we don't have any children. So that's probably one of the bigger
ones that I wasn't aware of, but again, you realize that you're alive.
Dick Foley:
Yes.
Mitchell:
Certainly there's other ways to have children, and we could have pursued them
if we chose to. My wife and I never really, she never pressured me to try
another alternative or--
Dick Foley:
Right.
Mitchell:
--my brother has triplet boys and he offered to supply some sperm, but I told
him to keep it! [laughs]
Dick Foley:
Yeah. [laughing]
Mitchell:
I said, "I don't need a tribe! I don't want a tribe here!"
[laughter]
Mitchell:
But again, when you really understand the big picture that, for whatever
reason God spared me, you're just happy to be here and not everybody is
supposed to have children.
Dick Foley:
Right.
Mitchell:
And we've had a very happy life. I'm sure if we would have had children it
would have been happy. I know Bill [laughing] could probably throw something
at me, but I don't know.
Dick Foley:
Yeah.
Mitchell:
Maybe there was some times that he doubted that, but overall I'm sure he's
pleased to have the children that he has.
Dick Foley:
Well, so that we don't lose the point, because I think it was a very good
point that you made earlier, and that is 28 years ago a lot less was known
about what the side effects of these drugs could or would be. You know,
cancer treatment continues to change, really almost month by month, and so the
drugs that are being used today are probably far different from what was used
back when you were ill. So one would hope that these days, doctors are better
prepared to know what these side effects are and can discuss them more
thoroughly with their patients. Bill, how about you and side effects? What
was your experience?
Bill:
 Well, as I mentioned, I was
kind of a physical fitness individual, and I enjoyed eating healthy foods and
jogging. I even had got one of those total gyms that Chuck Norris advertises,
and so I worked out. And I was a geologist, well I still am, but I had to
retire during the treatment. But I was a geologist with the Environmental
Protection Agency here in Illinois, and I really enjoyed the job and I loved
the people that I was with. I had no idea when I walked out of the building
on September 7th in the year 2000, prior to my surgery, that I would have to,
a year later resign. But as far as the side effects go, the chemotherapy
pretty well perforated my whole GI tract. I had extreme weakness and fatigue
and experienced depression and I felt that I couldn't trust my body
whatsoever. So it became psychologically damaging for me. I just felt like
there was really nothing I could trust.
I had a wonderful wife who took some time off from work, half days off
initially, when I was going through therapy just to be with me, and that
helped quite a bit. The loneliness and the isolation and the not being able
to have visitors and the embarrassment and the side effects themselves. And
not being told of the side effects, or having the doctor--quite frankly, who
is quite good and nationally known--still kind of insisting that the side
effects were more a result of my weak psyche rather than physiological
symptomatology. That kind of offended me because it was really bad, and
subsequent tests by a gastroenterologist back up the fact that my GI tract was
pretty well ulcerated all the way through.
But having said all of that, probably the psychological let down of
wondering what God was up to in this. I am a Christian and I never really
lost faith, but I was wondering where my hope and trust was, and I couldn't
figure out why. Didn't blame anybody for it. It was a whole new world and it
was what I called the chemotherapy world. And you go down to the cancer
center and all of a sudden, instead of being out with people and enjoying a
normal life, you are in the cancer chemotherapy life. And it's totally
different and it's like being in an alien world, and you just can't hardly
trust anybody or anything. And then the feeling of--I lost about forty pounds
and I went from 165 down to 112 pounds, and it was, I mean, I thought I was a
poster boy for Auschwitz.
Dick Foley:
Yeah.
Bill:
It was really that bad. So I think it basically affected me physically,
psychologically and spiritually to some extent, because you find that it's
really hard to pray when you're that sick. And I had a lot of great people
that were praying for me and there's where my trust was, I knew that God would
listen to them. I just didn't have it in me to say too many prayers.
[laughs]
Dick Foley:
You've really given us kind of a whole new definition today of the impact of
side effects, because they go far beyond the physical, don't they?
Bill:
Yes, they do.
Dick Foley:
Nick, how about in your case? Were there side effects that occurred that you
perhaps had not been prepared for, and how did you deal with them?
Nick:
Well, as previously mentioned, your side effects to me appeared to me to have
run into two categories. The physical side effects, hearing loss, chronic
fatigue, which was eventually the reason I was unable to work. I did go back
to work; I worked for six years. And in my job I was the manager for a
chemical company and traveled extensively in the United States and in France.
So it just--after six years of getting back to work, the fatigue aspect of
traveling, I was unable to do that.
Dick Foley:
And was that directly related, do you feel, to the cancer experience you'd
been through?
Nick:
Absolutely!
Dick Foley:
Yes.
Nick:
Absolutely. That was confirmed by my doctor, also. As mentioned also, every
drug that I have taken, the total body radiation that I experienced for the
bone marrow transplant, if you look at the labels on the bottles and the
waivers you sign, the side effects range from nothing to death.
Dick Foley:
Exactly.
Nick:
So I assumed that I was going to experience either nothing or death and
everything in between. And in some cases, actually, I did. I still have
ringing in my ears, fingers are tingling, but the other thing that was touched
upon was depression. That also contributed to the problem of the stopping work
and having to retire early. With the fatigue and the depression, you put that
together--nothing to do with the other physical aspects of the cancer
treatment--it really created some serious problems. The doctor recognized some
of these things, recommended a psychologist at the time. But they deal with,
the doctors in my opinion, my doctor, dealt with the issue AFTER I was having
a lot of these problems. And then he said, "Well, maybe you should go visit
somebody." And it was very helpful, but taking the drugs; Prozac, Zoloft,
they didn't help me. It was trying to get my mind back into doing something,
and this is right after I retired. The depression of not doing anything was a
problem.
Dick Foley:
So your doctor was suggesting that eventually that you would go get some
counseling?
Nick:
Yes.
Dick Foley:
For the depression?
Nick:
Exactly.
Dick Foley:
Yeah. Was that suggested for you as well, Bill?
Bill:
Yes, it was, and I did get some counseling. They had a cancer patient who had
suffered the same symptoms I did. She would come out to the house and visit
me as a friend and a counselor and was very helpful. But it was basically
time and bite the bullet is really what it kind of boils down to, because you
can't change the as is. The only comfort is to know that it's normal and that
over time you will heal, and when it takes so long to heal. I'm just now
starting to gain some weight back. I've gained twenty pounds back.
Dick Foley:
Mm-hmm.
Bill:
And then I had to enter into
the world of retirement, which I never really realized. So filling the days, I
do volunteer work and what have you, but the afternoons, I mean--I donated
my stem cells last May for a stem cell transplant, and I applaud the gentleman
[Nick] that had the stem cell transplant. [laughs] I don't know if mine came
back if I would really want to go through [it], having suffered so much the
first time through.
Dick Foley:
Yes.
Autologous Bone Marrow Transplant
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Bill:
And I'd like to ask him, having suffered the first time through, what was it
that motivated him to take the stem cell rather than a good hospice
program?
Nick:
Well, this is Nick.
Bill:
Yes, I'm sorry, Nick.
Nick:
No, no. No problem. I forget names all the time, and maybe that's all the
chemo drugs I took must have affected my brain. Or my wife says, "Oh, you're
just getting older and you forget things anyway." But to me, the original
chemotherapy put me in remission, but then when the cancer, the non-Hodgkin's
lymphoma, came back, the doctor said, "You have choices from doing nothing and
just monitoring it, to doing a bone marrow transplant." Well, I decided, my
nature is I want to do something about it. If it has to be done, I want to
know what can I do. I just don't like sitting by and watching the cancer grow
in my body. Lymphoma waxes and wanes and this is what my doctor had told me.
"You have one of the best cancers you can have." I thanked him very much for
that.
Dick Foley:
Hmm.
Nick:
But, from the standpoint I wanted to do something, my oncologist suggested
that I go talk to several different cancer centers to discuss the issue of a
bone marrow transplant as opposed to stem cells. Stem cell back in the early
'90's was developing. But for me, I wanted to do something about it. I could
not stand to go through chemotherapy again because I felt it would not be the
end all. And I approached several different facilities about the treatment
prior to getting into. I had extensive cancer involvement in my bone
marrow.
Dick Foley:
Mm-hmm.
Nick:
So I had to get that level down low enough, under 5%, before either of the
cancer centers would take me in their bone marrow program.
Dick Foley:
Did you feel, Nick, that you were able to learn all that you needed to learn
before you made the decision about the stem cell transplant?
Nick:
Yes, I did, actually. Well, my wife and I determined and studied and found
enough information that I felt comfortable making the decision. I did not
want to have a doctor or anybody else make a decision for me as far as my
treatment is concerned. I felt, and in talking with your other guests, we're
all very intelligent people. The doctor may know all the drugs and the names
of all of these, but we are capable of making the decision as to what we want
to do or not do.
Dick Foley:
Hmm.
Nick:
And I felt it was very important that I make the decision that impacted the
rest of my life, and that decision was to have a bone marrow transplant.
Dick Foley:
A very important point; where the responsibility for that decision truly
lies.
Bill:
In the bone marrow
transplant, I mean, are we talking about stem cells? Where they chemo you
down to near death and you have the sores and it's just intensive four or five
days of chemo, and get you down to zero, and then they insert the stem cells.
I mean, is that what you went through?
Nick:
Yes. Well, there's a stem cell transplant and a bone marrow transplant.
They are different from that standpoint.
Bill:
Did you have to have all the chemo in your bone marrow transplant?
Nick:
Yes.
Bill:
Okay. So you were quite sick?
Nick:
Oh, I was-- [laughs] --you were talking about losing weight. I lost 25, 30
pounds just like that.
Dick Foley:
Sure.
Nick:
I didn't eat for one month. I was in total isolation for the month while I
had no immune system. They put your bone marrow back into your system after
treating it. And I was in total isolation for a month and then after that
another five months of recuperation at home.
Dick Foley:
So you didn't have--did you have an unrelated donor or was your--?
Nick:
No, mine was autologous.
Dick Foley:
Autologous transplant.
Nick:
I used my own bone marrow.
Dick Foley:
Okay. I see.
Nick:
Yeah.
Dick Foley:
Let's go back just for one more moment to this idea of mental health as a side
effect. Maybe each of you could tell us just briefly what worked best for you
to try to maintain or support your own mental health through this process of
treatment and recovery?
Nick:
Are you asking me? Nick?
Dick Foley:
That would be great, Nick, if you want to start.
Nick:
Oh, yeah. Okay. [laughs] They started with medication. Prozac, Zoloft, and
a few others that I didn't feel was helpful to me. What seemed to help me was
to become occupied in a project to focus my mind on something.
Dick Foley:
Mm-hmm.
Nick:
And what I did is I worked on repairing and restoring an old summer cottage in
Connecticut.
Dick Foley:
Okay.
Nick:
So, my focus and attention, because I don't know about a lot of people, but
once I get my mind into a closed loop, the loop unfortunately, the way I see
these loops, spirals down and never spirals up.
Dick Foley:
Hmm.
Nick:
And without something to focus on, I think I would have continued--I could be
on drugs for the rest of my life without a focus in my life.
Dick Foley:
And it was also a project it sounds as though, where you were able to feel
productive.
Nick:
Very much so, and I could see the results of my daily efforts to fix and clean
and repair at my own pace, my own schedule, and with help from friends and
neighbors. But it was very motivating to me. This is after I was retired and
we've already discussed the issue that now I have nothing left in my life.
My job, which was of extreme importance to me and very rewarding.
Dick Foley:
Mm-hmm.
Bill:
Yeah.
Nick:
I didn't have any more, and I couldn't do it! And so, while I was detached
from my original work--I'm a chemical engineer--while I was detached from my
work, I now had something that I could look at. I could work with my hands
and my mind and look, and it was just so rewarding. That really helped
me.
Dick Foley:
Now, Bill, your cancer experience is the most recent of the three of you, so
maybe you're still kind of in the midst of this. What's working best for you
to support your mental health, to keep you out of depression and feelings of
isolation and loneliness?
Bill:
Well, I have Prozac. Of course, I had been taking Prozac because I had panic
attacks for about 37 years. So I started taking Prozac about seven, eight
years ago, anyway they asked me to double up on it. So I thought, well, I
doubled up on it for about two months, and I realized if I ever get well
again, I'll never have sex again! [laughs] So I cut back!
Dick Foley:
Mmm.
[laughter]
Bill:
I cut back to just one a day. But I would give myself little projects and I
would give myself destinations, I call them compulsions. When I was very
weak, it would be to start out, it would be just maybe to go to the store and
buy some coffee. Then to get in the car and go through the McDonald's
drive-thru and either get some bacon biscuits or some Chicken McNuggets or
something and get home.
I was very frightened when I was doing that because I was so weak. I knew
that if I ever had a flat tire or anything, I wasn't strong enough to hardly
walk around the car, no less fix the tire. But I think dealing with my own
weakness made me very depressed and it made me very nervous, and I was
uncomfortable in going out. Slowly I started--during the chemo, when they
give you all that prednisone, you have a lot of energy. I would be
walking.
Dick Foley:
Sure.
Bill:
But after the prednisone highs were gone and I was really so weak, I just
could not believe it. I would never take my own life, but there were some
mornings when I would wake up and I would be very disappointed because I knew
what a long miserable day it would be.
Bill:
But you just have to just kind of let time pass. The good Lord does something
for you. I never really felt His consolation, but I never really doubted that
at some day that I would not be well. And I would have to say this, that my
doctor had called me the recalcitrant patient because I refused to go for CHOP
therapy. I said, "You're killing me right now!"
Dick Foley:
Hmm.
Bill:
So that made me--after he told me that, this was after I was in remission, I
thought he would be in a celebrating mood, and he kind of chewed me out
because of my attitude. He wanted to give me two more rounds. [laughing]
Dick Foley:
[laughs]
Bill:
And I said, "No way! I'm in remission and that's what I want." And so I did
decide to donate my stem cells; he was very surprised. And I went from being
a bum to a hero in his eyes because it's a process.
Dick Foley:
Oh yes!
Nick:
Yeah.
Bill:
And I did it through the vein, not the port. And so having done that, and I
noticed I was walking one day and I thought, "I wonder what it would be like
to jog?" I could jog a block and I used to jog three, four miles. I finally
got back up to where I could jog two and a half miles, and this has been about
two and a half months ago that I have been able to do this. So that's helped
me, and I have a routine and I do volunteer work. I work at a soup kitchen,
and sometimes I'll eat the soup and sometimes I won't, because I do it pro
bono.
[laughter]
Bill:
And so, I have a routine in the afternoon. I like to watch "Murder, She
Wrote". It comes on the A&E channel, and even though I've seen those programs
many times, I pop popcorn and I have a little ritual. My wife still works and
she comes home about quarter to four because she goes to work at seven and
that's nice. [Also] volunteering, I joined a group of what they call, "Golden
K", older Kiwanis.
Dick Foley:
Sure.
Bill:
So I could get into a volunteer program. I did the Salvation Army ringing
the bell, and it was the longest two hours of my life.
[laughter]
Dick Foley:
[laughing] But it sounds like through all these activities and with the help
of a very supportive wife, to whom you gave credit before, you are getting
your life back. Things are getting back into focus again for you.
Bill:
Yes, and I tell you, if the Environmental Protection Agency were in Decatur
instead of Springfield, Illinois, I wouldn't have to drive and then I probably
would still want to work part-time. I do miss that, but I realize that part
of my life is over. It's like Colin Powell said, "Declare victory and quit."
And you know, you have to pass the torch, and so my job now is to try to find
something that will keep me busy, and volunteer work helps somewhat. I don't
have all the energy. I still take Procrit® shots periodically.
Dick Foley:
Mm-hmm.
Bill:
And so I feel really good about where I'm at, and I don't think ahead about
the stem cells. I just go from week to week and check-up to check-up, and I
would have to say, that it was a lot worse than I thought it would be. When
they told me I had cancer, I thought, "Well, I'll just have the surgery.
I'll be out of the hospital in ten days. I'll be back to work in three weeks.
I'll be back jogging. Life will be like it was." I never knew chemotherapy
would be so devastating mentally, physically and even spiritually, from the
depression, the loss of weight, the loss of appetite. You don't feel like
eating, and every time you go in they weigh you and then they chew you out
because you've lost weight.
Dick Foley:
Yeah. It becomes a complicated journey.
Bill:
Oh!
The Stress of Being Without Medical Insurance
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Dick Foley:
And different for each of us, but I'm glad to hear that sort of things are
getting back toward the normal platform for you. I want to turn to the
subject of health insurance, because I remember that as an issue for me
following my first diagnosis. People will say that not only did they battle
cancer, but really had to battle their insurance companies about seeing the
doctor of their choice or receiving treatments; getting the costs of their
care covered. In some ways I know this can be more frustrating for people
than dealing with the cancer itself. Mitchell, can you open for us with some
thoughts on insurance and how you were treated during your illness?
Mitchell:
Well, when I had mine--I was 25 years old when I was diagnosed--and they told
me that I needed six treatments of chemotherapy, once a month at a thousand
dollars a pop. Again, I'm 25, you can't go running home to mom and I was in
college, also. I basically said, "Look, you can't get blood out of a rock!"
And then they said, "Well, the government's got this--they're experimenting
with combinations of drugs, and if we can use you, they'll pick up the
tab."
Dick Foley:
Okay.
Mitchell:
Well, I didn't really.
Dick Foley:
Did they refer to it as a clinical trial?
Mitchell:
Yeah, as far as I know. They definitely told me this was experimental.
Which I was used as the experimental throughout the time I was in the hospital
anyway, so this wasn't anything new, basically. But of course, I said [yes]
obviously, and so that took care of the chemotherapy treatment. My oncologist
told me very recently that the protocol that they experimented with me, is the
protocol that they're using to treat Hodgkin's disease [now].
Dick Foley:
Mm-hmm.
Mitchell:
There wasn't--I still don't have medical insurance right now.
Dick Foley:
Wow.
Mitchell:
There was an instance where I had medical insurance and was paying for it, and
my wife had a car accident and we needed to take the money that we were paying
for medical insurance to put towards payment of a car--
Dick Foley:
Sure.
Mitchell:
--in that situation. So we let the policy lapse. Several months later I got
a letter in the mail from the insurance company telling me that they refunded
every penny I ever paid them. And basically they accused me of lying on my
application for the insurance because one of the questions was--and at this
point in my life, it was probably 13 years, 14 years that I was free of
cancer.
Dick Foley:
Sure.
Mitchell:
And the question was, "In the last three years, have you been treated for
cancer?" "Have you been treated?" And I said, "No, I haven't been treated."
I'm off. I haven't had any chemo. I haven't had any radiation. I'm not on
any special diets. I just go every year, two years, and I get a physical.
And matter of fact, that's how this came about, because I went to get a
physical and they sent the information to the insurance company, and it came
from an oncologist.
Dick Foley:
So that was the red flag?
Mitchell:
Bingo!
Dick Foley:
Mm-hmm.
Mitchell:
And so they said, "Wait a minute. This guy has had cancer. He lied." And
they refunded my money.
Dick Foley:
And denied you coverage.
Mitchell:
And denied me--well, we had let it lapse.
Dick Foley:
Oh, I see.
Mitchell:
In the meantime, I told them, I said, "You're lucky that the policy did
lapse." Because I was very upset. It came down to really, the question was
really their definition and deciphering the term treated.
Dick Foley:
Sounds like you answered the question truthfully.
Mitchell:
I did! And their definition was different than mine and they said, "Well, you
were treated." And I said, "No, I went and got a physical." I said, "Are you
telling me that every person that gets a physical is being treated for
cancer?" But anyway, I was very disappointed, and I actually--I don't have
medical insurance yet.
Dick Foley:
Right.
Mitchell:
And two years ago, this is also going back to the other question that we just
talked about of side effects. My radiation that I had twenty years ago was
very archaic and prehistoric and--
Dick Foley:
Mm-hmm.
Mitchell:
--whatever you want to call it. But several years ago, all of a sudden I'm
getting high cholesterol. And by the way, I have a degree in physical
education, so being brought up as a little bit of a jock mentality.
Dick Foley:
Sure.
Mitchell:
And they told me, "You have a heart murmur." And finally I went to a
cardiologist and he said, "You do have a bad aortic valve."
Dick Foley:
Mm-hmm.
Mitchell:
"Sooner or later you're going to have to get it replaced. It's not going to
get any better."
Dick Foley:
Hmm.
Mitchell:
And so you start doing your Robert DeNiro, you know. "Yeah. You talkin' to
me, Doc?" As a man, you just sort of ignore it a little bit and you go back
out on the tennis court and you start playing. And about two years ago I just
turned around and picked up a tennis ball. I just was warming up on the
tennis court, and lights out!
Dick Foley:
Wow.
Mitchell:
And so it was time.
Dick Foley:
So you had to have that valve replacement.
Mitchell:
I went and had to go to the hospital here in Atlanta, and even though I didn't
have any medical insurance they treated me like gold.
Dick Foley:
Wow.
Mitchell:
God is good! I'm so happy to tell you this, because I didn't have any medical
insurance. We had a little restaurant, we were working very hard but we
certainly weren't making any money at this restaurant.
Dick Foley:
Mm-hmm.
Mitchell:
And we, based on our financial situation, we qualified for 150% of the medical
would be taken care of.
Dick Foley:
Unbelievable! I want to quickly, just before we lose--run out of time. I
want to ask Bill or Nick if they had any particular insurance battles that
they can tell us about.
Bill:
I don't have any. When I
resigned from the state, I'm technically on disability because I still have to
take Procrit shots.
Dick Foley:
Oh, I see.
Bill:
So, I kept my state insurance as my primary insurance, and being 65 I have
Medicare as my back up. Someday it'll be reversed. But no, my insurance has
been quite good.
Nick:
Mine--this is Nick, and mine, I have to say the bone marrow transplant, in
fact, was in excess of $200,000 just for that one-month stay.
Bill:
Hmm.
Nick:
It was funny. The insurance company did approve a bone marrow transplant.
Dick Foley:
Hmmm.
Nick:
--at the University and then I chose to go in Boston. And as they're
harvesting my bone marrow my wife is in the insurance office discussing this
with them and saying, "Well, my husband is having his bone marrow harvested,"
and the insurance company says, "Oh, we approved it only for the University."
Meanwhile, I'm upstairs having all of my bone marrow harvested to have it done
in a week.
Dick Foley:
Oh my goodness!
Nick:
And they're saying, "You have no insurance!" So my poor wife is up there with
a person in the insurance department, who contacted the insurance company, and
there's a process for doing it. And after a few hours of this person
persevering with this insurance company, they finally, they said, "Well, if
you approve it for one hospital, what's the point of not approving it for the
other hospital for the same procedure?" But they were able to take care of
it. But my wife experienced a very frightening point in our progression
through the bone marrow transplant, of not having any insurance, at this
particular hospital.
Dick Foley:
Well, and how about you? You're focused on this treatment, where they're
going to make you real sick to make you better, and all of a sudden there's
this insurance loophole that you have to--
Nick:
Oh, unbelievable!
Dick Foley:
It had to be terrible!
Nick:
Oh, it was, when she told me about it. Fortunately, I didn't know this was
all going on until after they harvested the bone marrow. I came to, and she
said, [laughing] "Hey, by the way. I want to tell you a story about just what
went on while you were up here."
Dick Foley:
Wow! Mitchell, what are you doing now about future health care costs if
you're without insurance?"
Mitchell:
You know--I really don't know.
Dick Foley:
You'll just have to take it as it comes up.
Mitchell:
To be honest with you, I've listened to the other gentlemen going through
their situations and everything. For me sometimes, knowledge is great. I
just don't have the answers to everything in life. For instance, I know the
two gentlemen, they mentioned their retirement now, and I'm over here and I'm
54, and I'm going "What's that all about?"
[laughter]
Dick Foley:
Mm-hmm.
Mitchell:
I have no idea what retirement is! I don't have anything toward that. My
life is--one of the nicest things, and it goes back to one of the original
discussions that we were talking about earlier, if I never had my cancer, I
never would have met my wife.
Dick Foley:
Mm-hmm.
Mitchell:
She was a medical technologist that took my blood.
Dick Foley:
Oh, my gosh!
Mitchell:
And that's why I'm saying God is good, because, he gave me this person that
has been the sweetest and the best thing that ever happened to me in my
life.
Dick Foley:
There's a blessing.
Nick:
That's wonderful.
Bill:
Yeah!
Mitchell:
So, you know, we're going through
life and we're just really enjoying it. These setbacks and everything--I
mean, I sort of always look at--I can always look around and say, someone else
has got it a lot worse than this.
Nick:
Oh, absolutely.
Mitchell:
And I'll take what I have. I'll play the hand I'm dealt.
Adjusting to Life as an Early Retiree
|
|
Dick Foley:
So you're not going to retire, Mitchell, but let's turn to our other
gentlemen. You're both retired?
Bill:
Two retirees. You've got a guy, who's probably going crazy in retirement.
[laughs]
Dick Foley:
Yeah.
Bill:
No, I'm just teasing! [laughing]
Nick:
You're absolutely true, but activity is, I think, the key issue with any
retiree. The husband moves into the house, and now the wife, who is also
retired. Now we need things for each of us to be involved with, otherwise
it's an issue of I'm invading her space, she's invading mine.
Dick Foley:
Yeah.
Nick:
I'll take over the kitchen. You do this. So we need things and projects and
physical activities, mental activities, movies, theater. Things to keep us
each involved in life together, but so we can do--we each had our own
careers.
Dick Foley:
Sure.
Nick:
And now all of a sudden this, this motion, this dynamite action on each side
of our lives is gone, and now we're just focused on each other. [laughs]
Surprise! And that happens to people in life who don't have cancer to deal
with.
Bill:
Yeah.
Dick Foley:
But in your case, I'm wondering if the cancer or health-related issues brought
about retirement sooner than it might have come for you, and--
Nick:
Yes.
Dick Foley:
If so, how do you cope with that? That's the ultimate lifestyle change.
Nick:
Well, it certainly reduced the amount of benefits because I wasn't able to
continue working to the full capability of the retirement at this point. So,
it curtailed a lot of the activities that I was planning in my mind for what I
would be doing at the age of say 60, 62, for full retirement.
Dick Foley:
Mm-hmm.
Nick:
So it changed my focus as far as what I'm capable financially of doing in
life, and of course physically and emotionally. That part of my life has
changed, my ability to do extensive travelling or, a lot of things like that.
And sometimes depression still rears its ugly head--
Dick Foley:
Yep.
Nick:
--in my life over very foolish things, and then I need to smack myself and
say, "Wait a second. This is a hangnail versus what I've been through in
life." I'm putting too much emphasis on--. And I saw that when I first,
myself, survived cancer. I see people focus on "Oh, I scratched the side of
my car." Well, this person just had a lung removed and they're lucky they're
alive. And people are crying over a scratch or a dent on their car which is
so insignificant, or a hangnail as it was, always my favorite expression.
Dick Foley:
Yeah. Take a step back and put it in perspective.
Nick:
Exactly! That's a wonderful conclusion of all my hot air over here.
Dick Foley:
So, Nick, in your case, would you still be working had it not been for the
fatigue?
Nick:
Yes. I certainly would.
Dick Foley:
And that was brought about or was an aftereffect of the incredible treatment
regimen that you went through for your cancer?
Nick:
Yes. That is correct.
Dick Foley:
Now, do you feel any resentment over that?
Nick:
No, because I'm alive.
Dick Foley:
Yes! [laughs]
Nick:
[laughs] Whenever I get to a point where I'm kicking myself for stupidity, I
just take a deep breath and I say, "You know what? I'm still alive!"
Dick Foley:
Yeah.
Nick:
And I'd rather be where I am here alive than any other place. No matter what
big or little hardships that I've experienced, because I like to enjoy life as
much as I can.
Dick Foley:
Yeah.
Nick:
As Mitchell and Bill have indicated.
Dick Foley:
Not many great alternatives to being alive, at least that we know of.
[laughs]
Nick:
If you know of them, let me know and I'll put them on my list as I pass
through this wonderful life that we're experiencing. But life does change and
it's important for us cancer survivors, and that's one of the things that I've
learned. And I think, as I was listening to Bill, the issue of cancer support
group to me, was always so helpful because I could talk to people who knew
what I was experiencing. Consider the point; my wife had childbirth as we see
it in another case. You can explain to me as best you can what childbirth is,
but I cannot have the feeling of childbirth because I can never experience
childbirth.
Dick Foley:
Mm-hmm.
Nick:
You can relate the feeling of it to me as the thrill--I love sailing, so the
thrill of sailing, and when the boat is on a perfect keel and the wind is
blowing and you hear no noise. That experience--you can tell me it's relative
to my sailing, giving birth to a child, for example. I can relate to that,
but I cannot relate to childbirth, just as somebody cannot relate to me as
they can. When that doctor told me I had cancer, it's not like saying you have
a cold or we're going to remove a wart from your nose. This is a statement
that will live in my mind for the rest of my life.
Dick Foley:
And makes your life different from that day forward.
Nick:
Totally different than anybody else. If you have a triple bypass, you're
repaired. You're fixed. When you have cancer, with non-Hodgkin's lymphoma,
he says, I can be in remission, the doctor, my oncologist, I could be in
remission for the rest of my life, and I could be.
Dick Foley:
Mm-hmm.
Nick:
But there's no cure for what I've experienced at this point. Even with the
bone marrow transplant, with the monoclonal antibodies. I'm thrilled to be
alive.
Dick Foley:
You know, the one thing that I have learned, and it sounds as though the three
of you have as well, and that is in talking to men on this program I realize
that we're really better communicators than we are given credit for. Because
society, they say, has conditioned men not to talk about our health much or
its effects. Many men, as a result, they say, don't go to doctors on a regular
basis, or maybe they don't seek help when symptoms first appear. Do you think
the changes that have been brought about in your lives, the lifestyle changes,
are more difficult therefore for men than for women, because we're kind of
stoic and [laughing] don't deal with change well?
Nick:
This is Nick, and I do tend to agree with you that even when I went to the
cancer support group, the vast majority of people there were women expressing
their feelings, their emotions.
Dick Foley:
Mm-hmm.
Nick:
You know, men don't cry, men don't ask directions; men don't do a lot of
things because this is not the male domain to do things like that. So it's
not in our demeanor to do and to express our feelings and share our feelings
with people. I struggle sharing all my feelings with my wife, and only after
cancer was I able to. I don't know what changed, but I do express my feelings
more often.
Dick Foley:
Hmm.
Nick:
And it's the communication, when I do it, is absolutely wonderful. And I see
when I hold back or I'm a little depressed or something like that and I don't
share my feelings, I lose my ability to express where I'm coming from. Which
puts me in a very bad place, whether it's with my wife or friends or
family.
Dick Foley:
Mm-hmm.
Nick:
So I really do believe that for me it's been a positive experience from that
point of being able to express myself more clearly, and with the emotion and
the feeling that I really experience.
Recurrence: Hope for the Best and Count Your Blessings
|
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Dick Foley:
Do you have some fear, Nick, in some distant corner of your mind, about a
recurrence?
Nick:
Always.
Dick Foley:
And Bill and Mitchell, how about you two?
Bill:
Well, yeah. That's always
there. You know, you hope for the best and, you know, always leave a little
bit open in case the worst happens.
Dick Foley:
Sure.
Bill:
And that's basically the way I look at it. Hope for the best and be prepared
for the worst.
Dick Foley:
A good many years have gone by for you, Mitchell, but is that thought still
present at all?
Mitchell:
You know, it's all--I have to admit that it's always there, but I don't really
dwell on it.
Dick Foley:
Mm-hmm.
Mitchell:
You know, just to have this valve replacement thing come up, and I certainly
know that it was related to the radiation. So you know, there's a--okay, this
is what, leg two here? I mean, what's going to be coming next?
Nick:
Mm-hmm.
Mitchell:
You know, it may sound a little apathetic, but you know, I just am enjoying my
life as it is. And when the Lord tells me it's time to come home, well,
that's fine, since I'll be ready to go. But until then I really don't dwell
on it, but yes, certainly, it could happen.
Dick Foley:
That's a pretty healthy attitude, I would say, in that regard.
Dick Foley:
I'm wondering in your case, Nick, the fact of having had a recurrence may
cause that fear of another one to linger a little more strongly with you.
Nick:
It certainly could. Well, it's always the issue. Before I went through any
chemotherapy you don't know what it's going to be like.
Dick Foley:
Mm-hmm.
Nick:
But I went through it the first time with the chemotherapy, and then certainly
with the second time with the bone marrow transplant, and again more chemo and
radiation. So I know the process and I can't say that I'd be thrilled in
going through it a third time. And even at the support groups, one of the
gentlemen who was there said, "I would not be inclined to go through this
process again." And he was very serious about if it happens it won't be that
I will go through it again, and it sounded like he might do something extreme,
if you will.
Dick Foley:
Sure.
Nick:
And we've all talked about suicide and things like that, but he was very, very
serious about that point. And having been through it twice, I'm not sure I
want to go through this process again. You become resigned to certain things.
I know people who were in our cancer support group, one particular woman
refused, and she had lung cancer, refused any treatment whatsoever. And two
of us, who were surviving and struggling at the time, could not understand her
position.
Dick Foley:
Yeah.
Nick:
I've come to the point, after many discussions with her at the support groups,
she has the right to determine how she would like to spend the rest of her
life.
Dick Foley:
Mm-hmm.
Nick:
And it's not up to us who have a different opinion. We are here to support
her in whatever she wanted to do, and once I came to grips with that, we
helped her get through it. She never took any chemo, no radiation, no
surgery, nothing. She lived the rest of her life, which was very short, but
she was very happy because she could come to a place, we accepted her decision
and we supported her for the rest of her life. And she was thrilled with that
and we felt better in our own right, even though we didn't agree with her.
[laughs]
Dick Foley:
Right.
Nick:
But we supported her in her endeavor to determine how she chose to live the
rest of her life.
Dick Foley:
Well, but for some, and perhaps that would even include you, this really does
bring up a contradiction. Because on the one hand, perhaps you would not want
to go through this very rigorous treatment program again or protocol, but on
the other hand you say, "But I'm alive!" And if that can keep you alive, boy,
how do you resolve that?
Nick:
[laughing] I'm unable to-to be honest with you at this point.
Dick Foley:
Yeah.
Nick:
It's like anything. When I get to that stage in my life, if it comes back at
some point and I have to deal with it, I guess, like everybody, I will make
that decision at that time.
Dick Foley:
Mm-hmm.
Nick:
And at the point when I was told about the cancer, there was nothing that
would stop me from getting the treatment, going to the farthest corners of the
earth--
Dick Foley:
Sure.
Nick:
--to do that. Today, after having been through it twice--is experience a good
teacher? Does it help you understand what you want to do for your life? I
think it does.
Dick Foley:
Mm-hmm.
Nick:
Where I would be at that point, I don't know.
Dick Foley:
Okay.
Nick:
I would have to determine that. I think looking at it now if I was 75 or 95
and I was at that point in my life, I'm happy. I've lived a full life. I
wasn't at 48.
Dick Foley:
Right. Well you know another way that men are often characterized is as
problem solvers.
Nick:
Yup.
Dick Foley:
And maybe Bill, I'll address this to you first and then perhaps to Mitchell.
But I wonder how it felt, as a man, especially if you see yourself that way,
as a problem solver, confronting an issue like your health. And all of a
sudden here's a problem that you can't solve, at least not simply and not
without some help.
Bill:
Well, the helplessness is a
real problem, and I think that does psychological damage and that kind of
leads into the depression, I think. There really is nothing other than the
fact that you just have to be confident that some day you're going to be on
the other side. But the one thing I find that was interesting in what Nick
said, was that when he went through it the first time, as I did, I was still
working. And I thought I would kind of go back and I'd be combat-ready and
all this and that. Well, I have a different life now and it's not that my
life is any worse today than it was, but it's not as full and it's harder to
fill it up. I'm not quite back at a hundred percent; maybe ninety
percent.
I think if I were back and had enjoyed a hundred percent health for a time,
then you might say, "Well, I did it once, I probably can do it twice." But
being a little bit shy of being a hundred percent, I don't know that I would
want to go back to ground zero again and get down to 112 pounds and just be
miserable. And then still not know if after having a stem cell--which I've
been approved at two hospitals, so hopefully I won't have a problem if I
decide to have a stem cell--and pray God that it won't come back.
Dick Foley:
Mm-hmm.
Bill:
But anyway, as a problem solver, I think, yeah, it's somewhat debilitating.
But it's so new and there's so many other things that are discouraging that I
didn't so much dwell on what I'm going to do. But what probably irritated me
more than anything else, was the lack of people involved in the healing
process. The chemotherapists and what have you; while they're wonderful good
people and knowledgeable, and God love them, they don't do much to help you
solve your problems.
Dick Foley:
Mmm.
Bill:
They just kind of run you in and they run you out. Or they feed you full of
drugs and then they give you some candy, and then they all smile, and you're
not smiling.
Dick Foley:
So that other kind of support you have to find elsewhere?
Bill:
Well, I think that's true. And one of the things I want to say that--my
prayer from the very beginning, when I was feeling so bad was; I asked the
good Lord not to give me any feelings of resentment or envy to people who were
not sick--
Dick Foley:
Hmm.
Bill:
--and who had a great retirement and seemed to live the perfect life; kind of
like the Lifestyles of the Rich and the Famous. It seems like they never get
sick. It's just us guys that do. But having said that, He's been very kind
to me. I haven't had any feelings of envy or jealousy or what have you. I
just know, as was said earlier, that they have no idea, whatsoever. I thought
that birthing example was wonderful.
Dick Foley:
Yeah.
Bill:
They have no idea what it is to go through this.
Dick Foley:
Well, that's a very nice prayer that you expressed, and I think many would
say, "No wonder it was answered!" Mitchell, in your case, again it goes back
some years. But I'm wondering, when you faced your challenge and assuming
that you felt some frustration that all of a sudden things were beyond your
control to simply solve, were you able to express those feelings of
frustration, to family and friends? And if so, who could you talk to? Who
would listen?
Mitchell:
You know, I don't want to sound like I'm some kind of unfeeling or--I don't
ever recall going through that frustration. I guess maybe I can remember when
the doctor told me, he said, "You have cancer." And it sort of just went in
one ear and out the other, like it was an illness. It didn't knock me down,
like it might have knocked Bill or Nick. Of course, I was 25 and you have
this little, you still have that Superman mentality.
Dick Foley:
Sure.
Nick:
Yeah, right.
Mitchell:
That nothing's going to happen to me. And that's what I had. So my whole
thing was, "Okay, Doc, well, what do we have to do?" He said, "Well, we have
to take your spleen out, and you have to get radiation." I said, "Well, let's
get going!" You know, "I got things to do." And I think it's certainly to my
benefit that I had that attitude. Because I've never really looked back and
I've never said, "Why me?" It's easy for me to look back now, because back
then I didn't really understand what was happening. But like I said, if I
never had my cancer I'd have never met my wife.
Dick Foley:
Mm-hmm.
Mitchell:
And where did that come from? You know, it was a blessing. It was certainly
a blessing for me.
Dick Foley:
What's the old expression? When a door closes, a window opens?
Mitchell:
Well that's it, and you know, as far as some of the situations that we
have--that we probably, at least I become a real big hugger.
Dick Foley:
Ha-ha!
Mitchell:
You know, I mean, I'll hug you, and we talked about men not expressing
themselves. I don't know. It's gotten easier for me to express love, express
myself, because like I said, I don't know. I mean, am I going to be able to
come around this bend again?
Dick Foley:
Somebody said to me not long ago, Mitchell, that we should treat people as if
we were seeing them for the last time.
Mitchell:
Well, you know--
Dick Foley:
And then I stopped to think about that for a minute and realized, you know,
there's some real wisdom in that.
Mitchell:
How many times have you had someone close to you that's passed away, whether
it be a grandmother or a parent or a friend or somebody, and you go, "God!
If I only had time to say goodbye. Why didn't I take time to?" And it's
true. So I don't know how long my life is going to be, but I know that every
night I tell my wife how much I love her, and I thank God for giving me the
time and sparing me once again.
Dick Foley:
Now, to some extent do you think that your cancer experience has put you in
this place, where you do that and express yourself that way?
Mitchell:
Yeah, a lot of times when you're growing up and you're playing sports and it's
something like football, it's like, hit him before he hits you.
Dick Foley:
Mm-hmm.
Mitchell:
Do some damage before they do it to you. And I certainly can relate to some
of the things that Nick and Bill have said like, well, these people retire and
they live happily ever after. And it's like if you look at the blessings
you've got and the blessings you've been given, they certainly outweigh all
the ones that you might have missed out on.
Dick Foley:
Mm-hmm.
Mitchell:
And that's really where I am. I'm not trying to act like some martyr or
something, but I'm just very grateful for what I'm doing, the life I've had.
I don't have money. Never have. Doesn't matter.
Bill:
Sounds like you're a person
of great faith though, and--
Mitchell:
Well, you have to get faith when you go through those things.
Bill:
Oh yeah, and you know--
Mitchell:
You have to go through--I mean the doctors and all these other people can do
the best they can, but there is a Great Physician.
Bill:
Yes, there is.
Nick:
Definitely.
Finding Ways to Give Back to Others
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Dick Foley:
Let's explore, gentlemen, if we may, just one other topic before we wrap up
today. I suppose it would stem from the fact that the three of you have
agreed to share your stories on this program, and of course we are
discovering, that many people tune in to hear them and benefit from the
sharing that you do. And so that leads to the fact, I think, that many cancer
survivors talk about a need to give back to others; to somehow share their
experience, thereby perhaps giving it a purpose. And Bill, you've talked
about giving back. Did it begin with just the sharing of your experience?
Bill:
Well, when I retired I decided, there's a lot of people that go get jobs and
things like that, everything from a Wal-Mart greeter to a--you know, as a
Wal-Mart greeter, at least I could hold on to something and wouldn't fall
over.
Dick Foley:
Mm-hmm.
Bill:
But you think about that, and then I got thinking, no, I'm going to work the
soup kitchens and do volunteer work and do things like that. And try to stay
occupied and visit people that are sick in the hospital and things of that
nature. Not that I'm a Mother Theresa, but I think that when the Lord does
spare you that there is a reason. I do agree, and I thought, well, I'm 65
and, you know, I've got a wonderful wife, and we're not rich either.
And I would say that the cancer thing has taken away any desire for me to
want to accumulate any more goods. I told my wife if somebody offered us a
million dollars for this house, I wouldn't move out of it. Because I have no
desire to go through all that other worldly stuff that goes with the new
house; the new car, the scratch on the car, and all that stuff.
Dick Foley:
Mm-hmm. Mm-hmm.
Bill:
So, you know, it's just kind of--I don't know. That's my answer really. I
think I probably would be a good person as a resource for a cancer person, but
I think I haven't been called to do that. So I'd rather work in a soup
kitchen and things of that nature and not discuss the fact that I'm a cancer
patient. I do tell them sometimes that I may have to leave a little bit early
because of fatigue, but other than that.
Dick Foley:
But you're finding your ways to give back. Now, Nick, was it you who said
that you had been involved with a support group for some years?
Nick:
Yeah. And it really started off that my wife needed the support group, to
better understand what I was going through--
Dick Foley:
Sure.
Nick:
--emotionally and physically and everything like that. And she went, and then
after she went, she said, "You know, you should go because it might help you."
Well, naturally, the first thing, "No, I'm not going to a support group!
What do I need that for?" But once I got involved, I was the one who every
Wednesday when I was in town [said], "We're going to the cancer support
group."
Dick Foley:
Tell us how it helped you.
Nick:
First of all, I'm able to express myself to people who are going through the
process of cancer, whether it's the initial, "The doctor told me yesterday
that I had cancer. What do I do?" To the people who are going through the
chemotherapy process and "How do I survive chemotherapy? I can't eat. I
can't walk. I can't see. I can't sleep." The whole myriad of processes that
are associated with chemotherapy, radiation and surgery--associated with
cancer.
Dick Foley:
Mm-hmm.
Nick:
To the survivors; who anybody, after day one, in our opinion at the support
group. If you were told today that you had cancer and you were alive
tomorrow, you are a cancer survivor. You survived one day.
Dick Foley:
Yeah.
Nick:
So, it's one day or ten years. You're still a cancer survivor, and I was
there to help people. First give them hope, and then for those who had been
through the process prior to my learning that I had cancer, they could give me
hope and help to get through the process because you have no idea what is
going to happen to you! And you don't know what the chemotherapy is going to
do to you. You don't know what the surgery or the radiation is going to do to
you. And people can help you first understand what you can do to help
yourself to get through the treatment process. Secondarily; emotionally we've
been through that, we know what you're going through. I can help you because
I've walked in your shoes before.
Dick Foley:
There it is.
Nick:
And that is the key that helped me, and I felt good helping somebody
understand, you are walking now in my shoes. I've been there already.
Dick Foley:
Mm-hmm.
Nick:
And I can help you emotionally, physically. I can take you to the hospital.
I can visit you and I did many people in hospice, as they needed help there.
So it--and believe me, it was very difficult many times to see friends in
hospice--
Bill:
Mmm.
Nick:
--because we all knew what the ultimate process was and why they were in
hospice. It was very emotionally draining to have your friends, who you knew
nothing about their personal lives, what their job was or anything, just what
they were experiencing with the chemotherapy or the radiation or the struggle
with the insurance company. So we bonded with these people to a friendship
that you only build through emotional experiences in life.
Dick Foley:
Mm-hmm.
Nick:
And so, it was so beneficial to me, and I certainly hope to the people I was
with. And I know we talked about it all the time; that we helped each other
get through the cancer process.
Dick Foley:
It's always so enriching for me to have an opportunity to talk with people
like the three of you gentlemen today. I wonder if you'd just wrap things up
for us by telling us, really just in a few words, what you would like others
to take away from having listened to you today on this program. What do you
want people to take away from the sharing you have done with me today? Bill,
do you want to start?
Bill:
Anybody who has been diagnosed with cancer, educate yourself. My wife alerted
me to a lot of things on the Internet, and booklets, pamphlets. Educate
yourself so that you know that the symptomatology that you're experiencing, as
bad as it is, is normal. And I think once you understand that, half the
battle is won. And that's what I would like--and it does work out. And while
you don't feel that you'll ever get better again, you will! And how long it
lasts is immaterial.
The good Lord has all our days numbered. The World Trade Center people, I
don't know how many on those planes had cancer, but they're gone and we're
here, and so we don't know. But educate yourself and you'll be a much better
patient and you'll be a better person at home with your caregiver. I think
it's really hard on the caregiver, and the caregiver, my wife, educated
herself quite a bit, and that helped a lot, too.
Dick Foley:
Mm-hmm. Mitchell, how about you? What would you like people to take away
from the comments that you've shared with us today?
Mitchell:
Well, mine is more of a, tell your story. God has spared you for the time
that he spared you; for someone that may be going through it to hear. Just
like we're all here on the show tonight to tell our story, and to encourage
and give hope to somebody that doesn't have the slightest idea what's
happening and they're scared to death. But if we don't, if we don't see
somebody on the street and--you can tell by their hair that they're going
through chemotherapy--just because you've been through it and you know what it
looks like--
Dick Foley:
Right.
Mitchell:
--and just go up and just talk to them out of the clear blue sky. You'd be
surprised how grateful they are that you stopped and said hello to them. So
giving back is very, very important. However you do it. There's camps for
kids with cancer that I've been involved with. And like I think Nick was
saying, I go there because they encourage me; they give me hope.
Dick Foley:
Yes.
Mitchell:
You know, when I see these young kids and it's amazing. So there's so many
different ways that we can give back and sort of give hope to those that are
going through it, and I think that's very, very important and that's something
that I look forward to.
Dick Foley:
Well, I have heard, and I know that our listeners have as well, the one common
thread among all three of you tonight; and that is not just in the things
you've said, but in the way that you've said them, and that is the element of
compassion. We're grateful for that from all three of you. Nick, I'll turn
to you for some final thoughts, if I may.
Nick:
I guess, as a cancer survivor, Mitchell really defined for me the four letters
that we all look forward to when you hear the diagnosis, "You have cancer."
It's H-O-P-E.
Dick Foley:
Hmm.
Nick:
And I think the thread that we see throughout all of this is the issue that
cancer is not a death sentence. Cancer, you live with cancer, you survive
with cancer, and there is hope. As we discussed, new medical issues are
happening every day. There is hope if you have cancer to survive; whether
it's ten years, five years, a month, or for the rest of your life, and I think
that's the key. You will survive for the rest of your life. There is hope,
and you should enjoy every day of the rest of your life. That, I think, for
me--I'm enjoying life and as Bill and Mitchell both indicated, they're
enjoying life, the rest of their life. And that's where we are; enjoying the
rest of our lives.
Dick Foley:
And I will echo your words, Nick, as we close today, saying that I truly hope
that our discussion has helped you listening with some of the issues that may
be part of your life today. I want to express sincere thanks to our guests
today, Mitchell, Bill and Nick, for their willingness to share their stories,
their thoughts and feelings, and really a part of their lives with us today.
I hope that some of their experiences will help you think about and talk about
your own concerns in healing ways. I encourage you to listen to other
discussions we have available on the websites and on the phone by calling
1-877-333-HOPE, and there's that word again. Let the Cancer Survivors Network
become a resource for you. And so, for the American Cancer Society's Cancer
Survivors Network, I'm Dick Foley, wishing each of you a great day, today and
every day.
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