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Talk Shows and
Stories : Featured
Talk Shows : CareCast: Cancer Pain Issues
CareCast: Cancer Pain Issues
Recorded April 23, 2002
Welcome and Participant Introductions
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Michael Samuelson:
Hello, and welcome to CareCast, brought to you by the Cancer Survivors
Network, a free service from your American Cancer Society. I'm Michael
Samuelson, your host. Today we'll be discussing cancer pain, and joining
me by phone we have four guests, all survivors and/or family
caregivers.
Now, as a cancer survivor myself, I'm looking forward to this evening's
discussion. First let me briefly introduce our guests, and then I'll open
up the discussion as we talk about things such as barriers to pain relief;
advocating for yourself and for family members; how pain affects quality
of life. We'll also talk about the myths and the facts about pain relief
and the issue that's growing more and more, and that's the issue of
under-treatment of pain.
Our first guest is Susan, a caregiver from Connecticut. Susan is
married. She is 58 years old and has five adult children. Welcome to the
program, Susan.
Susan:
Thank you, Michael. It's great to be here.
Michael Samuelson:
Great! Susan, reading from this and taking a look at the information you
provided us, your brother was living close to your family. You were a
very, very good friend and he was diagnosed with melanoma and had surgery
for it back in 1995, and at that point the outcome was relatively
positive. However, on a check-up in 1998, he found a freckle under his
fingernail and unfortunately it was another melanoma. They amputated the
tip of the finger, but about a month later realized that the cancer had
spread to his lungs. Your brother was involved in several clinical
trials, but unfortunately they didn't work, and during this time his
biggest fear, understandably, was pain. In the fall of 1998, in Florida,
the cancer spread to his brain. He had emergency surgery and you returned
with him to a hospital in the northeast, and while he was there he began
having one pain problem after another. You continually advocated for
better pain control, but apparently the staff did not seem interested, and
unfortunately that's a story that's often told. Your sister joined you in
the hospital where you spent the last five or six weeks of your brother's
life with him. You were able, through constant advocacy, to eventually
get adequate pain control for your brother. Your brother finally seemed
relatively comfortable the last weeks of his life, and you're a nurse, an
American Cancer Society staff member, and a charter member of the Cancer
Pain Initiative, and I thank you so much for joining the program,
Susan.
Susan:
Thank you.
Michael Samuelson:
Our next guest is Yvette, a cancer survivor from Maryland. Yvette is 46
years old and single. Welcome to the program, Yvette.
Yvette:
Hello. I'm very happy to be here!
Michael Samuelson:
Great! Now, in 1982 you were experiencing some mild gastrointestinal
problems and you had some x-ray procedures, one of which ruptured a tumor.
You were rushed to the emergency room where you were diagnosed with
ovarian cancer. One of your ovaries and your fallopian tubes were removed
in surgery and you began seven months of chemotherapy. At the end of six
months the chemo wasn't working, so you had a full hysterectomy and have
been cancer-free since then. During your treatment, however, you
experienced two different kinds of pain, acute pain from the surgery--that
was easier to deal with because it had a time limit--and secondly,
chemo-related pain. It was strong, significant joint pain in your hips
and legs that affected your ability to walk. Your experience inspired you
to become a social worker and to help others who have also dealt with
pain. You are currently working at the American Pain Foundation where
your advocacy continues today. I thank you for all of your advocacy work
and certainly for joining us today, Yvette.
Yvette:
Thank you.
Michael Samuelson:
Our next guest is Lynne, a 33-year-old cancer survivor from Massachusetts,
who is married with two stepchildren. She is also vice-president of the
New England Coalition for Cancer Survivorship and works for the American
Cancer Society. Welcome, Lynne.
Lynne:
 Hi, Michael. Thank you for having
me.
Michael Samuelson:
Thanks for being here. When you were just a baby, Lynne, 16 months old,
you were treated for a form of childhood cancer called neuroblastoma, and
the treatment consisted of chemotherapy and radiation. The doctors
thought you might only have six months to live. You obviously survived
and you beat the odds. However, when you were 13 you were experiencing
pain in your right leg and kept going back to the doctors and they
couldn't seem to find anything wrong with you. Finally, after some
months, you were diagnosed with osteosarcoma, a bone cancer, and
fortunately, rather than amputate your leg, the doctors used a new
technique of bone grafting. They removed a bone called the ilium and
replaced it with a graft. You had to learn how to walk again, but you had
beat cancer once more. In your early 20s you began having problems with
chronic pain as a result of your radiation treatments. The pain has
increased over the last ten years, I'm sorry to say, and I thank you very
much for being here to share with us your experience.
Lynne:
Thanks.
Michael Samuelson:
We also have Kevin, and Kevin is a cancer survivor from Florida. Kevin is
married and 42 years old. Welcome, Kevin.
Kevin:
Well, thank you, Michael. I'm glad to be here.
Michael Samuelson:
Now, in the fall of 1988, when you were just 28 years old, you experienced
flu-like symptoms. Also your abdomen was distended and you were in
tremendous pain, so much so that you couldn't walk straight. You were
also experiencing night sweats and weight loss. Over the course of four
months you were hospitalized four times for tests and saw many doctors,
though none of them could give you a diagnosis. They kept saying that you
were too young [laughs] to have cancer, which is a very interesting
observation.
Kevin:
[laughs]
Michael Samuelson:
Finally you demanded the lumps on your neck be biopsied, so you took
control of your cancer care, and within 24 hours you were in a cancer
center, diagnosed with stage IV-B non-Hodgkin's lymphoma. You had a tumor
the size of a football in your abdomen, and you spent a month in and out
of consciousness on a Demerol drip. Your treatment consisted of three
forms of chemo administered over a course of eight months. You responded
well to the chemo and have been cancer-free since then, though you
continue to experience chronic pain as an effect of both your cancer and
your treatments. And again, Kevin, and the rest of our guests, thank you
so much for joining us.
What I'm going to do is we're going to go through oh, just a series of
questions, guests, and I'll direct some of them to you and go ahead and
respond, and if you've got something extra to add, the rest of you go
ahead and do so. Now, Susan?
Susan:
Yes?
Barriers To Getting Pain Relief
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Michael Samuelson:
You and your sister had to really work the system to get your brother
relief from his pain. What were some of the barriers that you encountered
and how did you guys get around them?
Susan:
Well, early on our first barrier was the oncologist himself. He just was
opposed to having to put my brother on a continuous morphine drip, which
he needed, and we literally just kept badgering him in every way possible
and he finally agreed to it. You know, he didn't believe that my brother
had the kind of pain he had, and it was interesting because once he
finally agreed to this treatment and my brother had pain relief, he began
to eat and the whole quality of his life improved and we had some good
days with him. It was a remarkable difference but beyond that, the
nursing staff were the biggest problem, and I think as a nurse that was my
biggest disappointment, having spent years in professional education.
They were afraid to increase his morphine, and I was actually asked by one
of the nurses if I were trying to kill him. "Are you trying to kill your
brother?" she said to me.
Michael Samuelson:
And the difficulty, Susan, you being a healthcare professional, and
assertive by nature given your profession, and knowledgeable, and the
challenges that you had in trying to get people to provide the care, so
the advocacy role is one that you didn't expect that you were going to
have to use with regard to the healthcare providers. Yvette, you were 20
years old when you were diagnosed with cancer.
Yvette:
27.
Michael Samuelson:
27, still a young woman.
Yvette:
Yes.
Michael Samuelson:
Do you feel that your age became a barrier? Did you feel any kind of
reactions from providers because you were a young woman?
Yvette:
I think so for two reasons. One was that I was diagnosed with ovarian
cancer at such an early age, and I'm not quite sure that they knew what to
do with me. They didn't have--I mean they hardly had any people at that
time, any women at that time, who were diagnosed at such an early age that
I was aware of, and I think that at the time, cancer was really thought of
as an older person's disease. When I finally started looking for support,
I didn't really come across many young adults who had had cancer either.
I was in a support group for a very long time in which I was the youngest
person in the group, and a lot of the people in the group had children my
age.
Michael Samuelson:
Yeah.
Yvette:
So, the issues that we were all dealing with were very different.
Michael Samuelson:
Then as your own advocate, what did you do to overcome this kind of
discrimination based upon your age?
Yvette:
Well, I was very lucky in that I lived in Los Angeles at the time, and I
discovered a support group organization fairly close to where I lived that
was specifically for young adults with cancer. I started going to support
groups and social events and meeting other people who were closer to my
age and really talking about all the things that we were dealing with as
young adults; trying to start our lives and our careers and finishing
college and getting on with things, and that was enormously supportive.
I think what helped me the most was really seeing how other young adults
were finding information, getting support, struggling with being able to
talk about their illness and talk to their families and keep moving
forward.
Michael Samuelson:
Yes, and of course the support of a group is so helpful. Specifically
though, dealing with your pain concerns.
Yvette:
Mm-hmm. [yes]
Michael Samuelson:
Did you have to seek out somebody to speak on your behalf? Did you find a
voice and were you able to be assertive, or did you just find that you
were bearing a lot more pain than perhaps you needed to?
Yvette:
I think that I've learned to be assertive over time. I found that a lot
of my healthcare professionals really didn't talk about pain. They didn't
educate me about pain, and I didn't know enough about pain or what I was
entitled to in terms of advocating for myself, to be able to talk to my
healthcare professionals, my doctors and nurses, about pain. So I think
that was something that really fell by the wayside for a very long
time.
Michael Samuelson:
Yes, and this is a recurring theme about being aggressive with your own
advocacy. Susan, let me go back for a second to you, because you are a
healthcare provider and you were finding barriers right there in the
system with you when you were trying to get your brother some relief.
What kinds of things did the nurses or docs say that you had to
counter?
Susan:
They said that he had enough medication and that they couldn't increase
the dose, and that his pain should have been relieved by the dose they
gave, even though he was doubled up in pain, just looking at him. And it
was one of those, you know, like everything I said, they said something
else. And then they started to avoid us, so my sister and I found
ourselves alone often in the room because they wouldn't come, wouldn't
come back. So we had to keep on going. I actually met a nurse out in the
parking lot coming in early one morning who said to me, "This is never
going to happen because half of the staff are uncomfortable with the
aggressive treatments."
Michael Samuelson:
This part of it was that you were anxious at all costs to be able to have
your brother receive the relief that you felt he needed and that he
wanted.
Susan:
Absolutely. He was so afraid of this happening, and I promised him
[laughs] months before, not to worry about the pain because that was
something I knew --
Michael Samuelson:
Yeah.
Susan:
--could be controlled. And then he--I felt like I was letting him down
the entire time.
Michael Samuelson:
Yeah. Lynne, you've been battling cancer on and off since you were a baby,
since you were just a little one.
Lynne:
Right.
Michael Samuelson:
Do you feel that there was any difference in getting your pain treated as
a child, for example, or a teenager, as opposed to now as an adult?
Lynne:
I think it was very different. When I was a child, the pain was related
more to having cancer currently, so more in treatment. And when I became
an adult, I'm in remission now; my pain is all stemming from long-term
survivor issues. I have nerve damage from radiation and surgery, and
other types of pains because of the different types of treatments and the
way my body is shaped due to a lot of surgeries. I find that growing up in
the survivorship movement, I'm one of those that they're kind of learning
because I'm living and it's wonderful, but on the other hand, there really
isn't a lot of information, and in the pediatric world while you have
cancer they're wonderful and they want to keep you out of pain, but
they're also very hesitant about giving drugs. So, a lot of my physicians
now, the oncology specialists, are still from the pediatric world, and
they have a heart attack when I tell them how much pain medicine that I
take to maintain my pain, and it took a very long time for actually me to
give myself permission to ask for help, one, and two, to get the
assistance and the help that I needed and to get my pain managed. So I
think as a survivor, and because I'm not currently sick, the pain is
looked at differently than if I was receiving chemotherapy and had a tumor
and said, "I'm in pain." I think they're more apt to try to keep you
comfortable when you have the cancer and less apt to treat the pain if
it's a long-term issue. It took a long time for the diagnosis, and I'm
still, every now and then, advocating and going back to try and improve
the treatment.
Michael Samuelson:
And so many people don't think of it in terms of a staging with pain, but
of course that's exactly what it is. You had the pain associated with the
treatment, and then you've got the pain associated in effect with being a
survivor that comes with it. When you were a little one, and I guess
particularly when you were a teenager and you had to deal with the pain
associated with the progressive nature of the cancer, who was your
advocate?
Lynne:
My mother, and I was not a big pill-taker back then. I used to think
[laughs] morphine was a wonder drug, and most of my pain was more related
to surgery and when I learned how to walk, but I didn't take a whole lot
of pain medicine when I went home, and if I did, it was more like Tylenol
type of pain. I really wasn't on pain-killers unless it was right after
surgery, and I think that's why all the problems that I had for a long
time is that I survived when I wasn't supposed to, I walked when I wasn't
supposed to, and I've always been the example that everybody looks to at
the hospital, and puts on this pedestal at how great I do. So it was very
hard for me to admit that I needed help, and ten years ago I had a hard
time. I think I'm one of the few people that needed a support group just
because I needed to go to a pain clinic [laughs]. But once I got the
help, now I have no problems at all asking for more medication or
advocating for myself, and I still don't manage my pain correctly and I
know that. I wait until it's chronic and I don't, take it throughout the
day like I'm supposed to. There's a lot of barriers, even though my
mother was an advocate for me when I was a child, there's a lot of myths
and misconceptions about pain medicine. My mother will constantly tell me
she is afraid I'm going to become addicted to drugs because she reads all
of the information on OxyContin™ and hears all the information in the
news. People will say--I don't think they even think about what they're
saying, but if someone finds out that I take Percocet®, they say things
like, "Oh, you're so lucky you get to take Percocet."
Michael Samuelson:
[laughs] Yeah.
Lynne:
They don't think about the reason I'm taking it.
Michael Samuelson:
Yeah.
Lynne:
And it's like taking aspirin for the general person. I wish it would make
me high. It doesn't do anything of that nature--
Michael Samuelson:
Well, I think what happens, of course, is pain is a whole different
field--
Lynne:
Right.
Michael Samuelson:
--when it's something that is part of your life like this. Kevin, in your
experience, do you feel that sometimes the difficulty in communicating or
describing the pain can be a barrier in itself?
Kevin:
Oh, absolutely. I mean, it's not like something you can actually see.
If you go in there for a broken arm, you can talk about the broken arm and
the pain that's associated with that, but when you have other types of
pain that you're trying to put the words to describe. In some cases it's
very difficult to properly ascribe words to that, because there's not
anything that you have ever had before that you could relate to, that you
can draw a picture for someone to give them an idea as far as how intense
these feelings are that you're experiencing from either the treatment or
the disease itself. It's definitely a big barrier. I think that for a
caregiver it can be even a bigger barrier because when they're trying to
act as an advocate for someone and they're talking to the medical team
about this, the medical team is seeing this and seeing that, wondering how
much of the concern that you have for your loved one is maybe playing this
up a little bit more so than it actually is. I think it adds some
difficult pressures for the caregiver and being able to talk to the person
who's going through the experience and then transcribing that to someone
else and again make them feel and experience what is truly going on
there.
Advocating For Yourself And Becoming An Educated Healthcare Consumer
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Michael Samuelson:
Listen, talking about advocating for yourself and also for your family
members, Yvette, how did you change the way that you advocated for
yourself now versus when you were first diagnosed? Did that whole process
change, and if so, what do you do differently now?
Yvette:
Well, I think it was a process of trial and error at the time, learning
from other people and testing it out, and also feeling confident that I
had a right to be able to advocate for myself or get more information or
more resources or a different perspective from my healthcare
professionals. It's going to be twenty years this August since I had
cancer, so I have had the benefit of having been a survivor and also
having been an oncology social worker for a very long time, learning
strategies but really having the confidence that if my doctors didn't
bring something up that I was interested in or wanted to know about, that
I had the right to be able to ask them or at least find out who I could
ask. So my experience now as a healthcare consumer is very different. I
am much more confident. I really do a lot to find out even in regular
check-ups what procedure is being done, what it means or anything that has
potentially long-term consequences, what those consequences would be. I
always try to find doctors who will work on a team with me rather than
just telling me what my healthcare will be. And I think that makes a
really, really big difference in terms of how I feel about going to see my
healthcare professionals and how I feel about being an educated healthcare
consumer. I think that it's up to me; it's up to each individual person
to become an informed healthcare consumer. We can't depend on other
people to do it for us.
Michael Samuelson:
That's what I'm hearing, that there is this relationship between the more
knowledge we have, the more accepting we are that we are in control of our
treatment, and with that comes the assertiveness necessary to get the kind
of treatment that you need. Lynne, when did you find yourself making the
transition of having your parents advocate for you to becoming your own
advocate?
Lynne:
The second I turned 18. I couldn't wait to be in charge of my own health,
and it was interesting because all of the decisions--back then they didn't
talk to teens--they just made decisions.
Michael Samuelson:
They talk about you, right?
Lynne:
So I wasn't a part of my team at all. I'm sorry?
Michael Samuelson:
They talked about you while looking at somebody else.
Lynne:
Right. [laughs]
Michael Samuelson:
Yes.
Lynne:
But I read it in my chart after.
Michael Samuelson:
[laughs]
Lynne:
But they didn't discuss anything with you, they just kind of told you
things. And I couldn't wait to be in charge of my own health, and then I
turned 18 and went off into the blue yonder and decided I was going to
take care of my own health, and found out I had no idea about how to do
it, what I was doing. My mother actually had to make a resume for me
because they'd ask me questions, "How old were you when you had cancer?"
and I'd say, "Oh, I was a freshman in high school." And my mother, I have
to say, was so far ahead of the time. My cancer when I was an infant was
in 1969, and way back most physicians were male, almost all of them were
white. My mother was a single parent from an inner city with an only
child, and I used to enjoy hearing the stories from some of the nurses and
some of the doctors that they would talk to her in this language, and she
would say, "Speak to me in English so I understand it." And she still, to
this day, has a file. All of the things we teach people now, write
questions down, write tests down. She could tell you, if I called her
right now, in 1970 I had chemotherapy, what it was, what the dose was and
what type it was.
Michael Samuelson:
That's so important to be able to have that.
Lynne:
Yeah.
Michael Samuelson:
It gives you the control with it. Kevin?
Kevin:
Yes?
Michael Samuelson:
Have you found advocating for yourself to be difficult or easy?
Kevin:
I think initially it was difficult. Prior to being diagnosed, I had never
really seen a doctor. I mean, I never had any reason to. I was always
very healthy. So I was kind of thrown into a system, and I just did not
have any understanding of how it worked. And growing up in a household
where you were taught that you do what the doctor tells you to do, it was
a difficult transition for me. I think that what kind of started it off
was that I had such a difficult diagnosis. That I became very cynical and
very suspicious as far as believing everything I was told and everything I
was supposed to be doing. So I started asking questions and asking the
other people that I know to do some research for me that were in the
medical profession, and if I didn't get the answers, not necessarily the
answers that I was looking for, but I didn't get answers that I felt were
either reasonable or that I truly understood, I'd ask for more people, ask
other people, ask the nurses, ask some of the other doctors. And then
start kind of comparing notes. What I found was after I started doing
this, and again, like the other guests have talked about, becoming much
more of an informed consumer on the matter, that it did become easier for
me. I was better prepared for each of the appointments, or better
prepared for when the doctor came into the hospital room, and then it
gradually changed to where now it is easier. Having also served as a
caregiver to both my father and my wife, I very quickly take the bull by
the horns at this point and ask those questions and be part of the
decision-making process.
Michael Samuelson:
We hear this so often, and the words of all of you are so important for
those people who are listening or who are reading, because indeed, if you
don't assume the lead position in your care team, who will? In other
words, you turn it over to somebody else. Susan, first of all, I just
have to commend what you and your sister did. I think that this is
remarkable, and so necessary and so appreciated by everyone. Did your
brother ask you to be his advocate, or did that role kind of evolve as
your brother became less able and you and your sister saw the
responsibility?
Susan:
I think that it just evolved. I had been his--kind of during the looking
for clinical trials and during all of the period that came before this
crisis at the end of his life, we spent a lot of time discussing different
treatment options, and was a very informed consumer right along and always
had a new plan. We learned quickly that we kept changing what we were
hoping for. Of course, I hoped in the early days that one of these trials
would be successful. Then when it became apparent that he was nearing the
end of his life, I was hoping then that he would have a peaceful death and
that we would be able to spend a lot of quality time together. And then
when that wasn't happening, it was just a huge area of pain for us
emotionally, because we were suffering with the loss, impending loss of
him, and then the frustration of not being able to fix it, you know?
Michael Samuelson:
Well, also you had the frustration, I think others do, too, and as I was
reading about your situation with your sister and your brother and you,
and that is where a caregiver will assume, with the best of intentions,
that they understand what the intent or the need or even the desires of
the person you're caring for, what they may be. Where in your case,
certainly you understood your brother's interests and desires and his
needs, but you had to do a little bit of battling with the healthcare
system in order for that to be realized. Is that true?
Susan:
That's true, and it was interesting because there was a certain amount of
fear of addiction that surfaced on the part of the healthcare
professionals. Even then when it was apparent that his life was coming to
an end, which really to me was mind-boggling because they were afraid of
giving him too much medication for fear of him developing an addiction,
which seemed pointless.
Michael Samuelson:
Well, Susan, in your situation you do have a nursing background and you've
been around medical centers for years and years and years, so for you at
least there was kind of the professional strength behind that. What would
be your advice or suggestion for somebody who has none?
Susan:
I would suggest that they try to get an advocate. Someone that was
informed or someone that had the strength and stamina to, stand beside
them and keep it up. I remember saying during this time, "I need someone
to take care of me."
Michael Samuelson:
Oh!
Susan:
I was feeling so overwhelmed! I had to keep taking a deep breath and
going back for more, so to speak.
Michael Samuelson:
Well, an advocate for the advocate. [laughs]
Susan:
Well, I really think that we need to create a broader acceptance of the
use of pain medication, and talk to people way before they ever become ill
about how important these things are.
Michael Samuelson:
That's very important, and we'll come to that too.
Lynne:
The other issue I wanted to bring up is, advocating with the insurance
companies. I had a very hard time--there's a lot of pain clinics and a
lot of specialists around, and for a while I was dealing with just primary
care physicians whose expertise wasn't pain and pain control. And trying
to get the insurance to pay for me to be able to go to the pain clinic and
the specialists took a lot of advocating on my part, but when I finally
got there it was worth it because immediately they knew what to do and got
my pain under control immediately. So, sometimes insurance is a barrier
as well, because they don't want to pay for extra services. "Oh, the
doctor doesn't want to refer you because they think they can handle it."
So people need to advocate in that way as well.
Maintaining Your Stamina And Quality Of Life
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Michael Samuelson:
Well, in all of your situations, for Susan and for Lynne, Yvette and for
Kevin, what you went through as a caregiver and what people often forget
is that the person who is the caregiver is also a person with cancer.
Cancer has that kind of community strength and spirit to it. What did you
guys do just to maintain your stamina? Just to deal with it?
Anybody?
Susan:
Well, I was fortunate that I have a very supportive family and that my
sister and I were able to rotate. We both stayed there for about four
weeks, but she would stay and I would come. My employer and all of my
coworkers were really awesome, too, in terms of just letting me quickly
touch base with them and being out of the office a great deal of the
time.
Michael Samuelson:
For those of you who are going through the treatment yourselves, you had to deal with your pain, but you also had to deal with being your own advocate, and you had to deal with the logistics of having cancer. So all the normal stressors along with the pain and the additional stress of going through this. How did you guys deal with it?
Kevin:
Well, this is Kevin, and I can say that probably initially I did have
thoughts that it would be a lot easier just to quit fighting this and to
let everything just run its course, but that's never been quite my style.
I'm always one of these that's going to go down fighting and the
alternative, too, to not becoming an advocate for myself or not trying to
get some systems changed; to make my own situation better just didn't fit.
I just had to do it. And it actually, to some degree, became sort of a
little bit of a purpose for me throughout, that is that I certainly was
going to try to make things better for myself.
Michael Samuelson:
Yes. Well, that brings up the whole issue of quality of life and how it
affects the quality of life. Yvette, how has your chronic pain affected
your life and your life goals?
Yvette:
I think that at the time I really thought the pain would go on forever,
and I remember--I'm very surprised to look back on it now, that I never
got any pain medication. I can't even remember if that conversation ever
came up, and I also agree with Kevin, was it, about not wanting to give
up, because that wasn't my style, and just trying to rearrange my life a
little bit to try to get through it. You know, when I was going through
chemotherapy I really didn't do a whole lot. I was lucky in that I had my
own business at the time, and so when I could work at home, I did. I was
married at the time and my husband was very supportive. My family was
very supportive. But I think that it really made an impression on me that
even when I started to be able to advocate for myself, I didn't find that
the system was very receptive to it at the time, and I think it influenced
me to try to become a voice for other people. When I was going to the
cancer support group for young adults, I was enormously influenced by the
social workers there, who did individual therapy and ran support groups
with all of the participants. After a very terrible year after
chemotherapy, trying to figure out what I was going to do with my life
during--while I had some time, decided to go back to social work school
and really wanted to work with other cancer patients, which I have done
ever since I graduated. So I think that it very much influenced me to
take that a step further because it was so difficult to find my own voice
in all of my experience that I figured if I could help somebody else, if I
could advocate for somebody else, then that would be one more person who
didn't have to suffer.
Michael Samuelson:
This is kind of a question for all of you and maybe Lynne in particular,
but the whole issue of pain and yours has pretty much been with you for
your whole life, how about in terms of your relationships with others?
Your friends, your family? How do they react, and how would you like them
to react?
Lynne:
I am very fortunate. I have a wonderful support system, and I have an
absolutely wonderful husband who actually married me knowing I had chronic
pain, and I do pretty well. I have good days and bad days, but there are
times when I could literally walk through a wall, because if all three of
my different types of pain happen at once, there is really nothing that
can touch them. So people kind of learn to help me however they can, and
I'm very lucky with my coworkers and where I work at the American Cancer
Society, that I work in an organization that's so understanding. That if
I need to work at home once in a while that I can do that. On the other
hand, I'm such a fighter and put up with it, that a lot of times I'll have
a really bad day and have severe pain, and people just expect me to go on
as normal because I'm always the one that everything's fine. My mother
has a very hard time with me taking pain medication, and every now and
then she'll say, you know, "Oh, my God. You're going to get
addicted!"
Michael Samuelson:
[laughs]
Lynne:
Or just read about something in the newspaper, or she'll send me an
article and we'll get into these arguments, and I tell her its people like
her that's a barrier for people looking for cancer pain treatment.
Michael Samuelson:
Yeah.
Lynne:
Because people are afraid of getting labeled, and I have to say if it
wasn't for where I worked at the time--I was pretty pain-free for a very
long time after treatment, and then started again in my early 20s to
experience the pain, and never expected it. Just like Kevin and Yvette,
I'm a fighter, so I lived with it and just kept pushing myself, and it
just totally took over my quality of life completely. It was before I met
my husband, but I was getting up, working, couldn't concentrate. I'd go
home and just cry because I couldn't sleep. I couldn't do anything. And
they literally put me in a cab at work one day and said, "Okay, it's time
to stop helping the whole world and time to help yourself, and you need to
recognize that, you need help." I did a lot of reading and called our 800
number, so when I was able to realize that I did need the help. So giving
myself permission to ask for help took a little bit of a push, but once I
did I found myself fighting the system, but pretty much everybody deals.
My stepchildren are unbelievable because they totally understand. They
can tell themself if I'm having a bad pain day or not, and I'll drop
something and they'll pick it up. Where my husband could probably fall
over in front of them and they'd step over him [laughs] because they know
that he's not--they'll say to my husband, "Well, Lynnie's legs hurt."
So, I'm lucky in that sense, too.
Michael Samuelson:
This is one of those questions that I think is a reflective question, and
this is for all of you. Have there been any gifts that the pain has given
you? Do you feel any special gifts that have come with having to live a
life with chronic pain?
Kevin:
Well, this is Kevin. I guess that if anything, you find yourself being
more tolerant of other people kind of complaining about some of their
aches and pains. Not all of them, but with people who do have serious
chronic issues you find yourself being far more sensitive to those than
you probably would have not going through this experience before.
Michael Samuelson:
That sensitivity issue. Susan, in terms of your brother, can you describe
for us the impact your brother's experience has had on you and your
reaction toward pain? Is there, and this would be a human reaction, do
you have any fear of pain that you might have to deal with in the future,
or have you--?
Susan:
I think my fear is for the people that are in pain today and not getting
the relief that they need, and I say that since I had been actively
involved in the Connecticut Cancer Pain Initiative for almost ten years.
When it came up on my brother's experience, and I thought that we had done
a better job of educating both public and professional, that it
recommitted my sense of needing to work harder and stronger to get the
word out. I personally have such a strong sense of urgency around this
issue.
Michael Samuelson:
You know, it sounds like for all of you that this kind of attitude and
this tenacious approach to this, of being your own advocate and advocating
for others, has become therapeutic for you.
Lynne:
This is Lynne. It sounds strange, but you know, thinking about your
question, I think, I don't know if "gift" is the right word, but being
someone that wasn't expected to live, and they were able to save my leg at
a time where it was very unusual, for the most part, I would much rather
be dealing with cancer pain than some of the alternatives that I could be
dealing with. Same with Susan, my concern is for the people now that are
dealing with pain that think that they either deserve it or it's a normal
piece of their treatment or survivorship, or don't have an advocate or a
voice to speak for themselves, and it has opened up a whole world for me
as well with sensitivity, like Kevin said earlier. You become much more
tolerant of people and realize how lucky you are. You know, pain is just
one piece--there's always someone worse off than you out there. So I've
met some amazing people where my cancer pain looks like nothing compared
to the things that they have been able to overcome. So I try to--I mean,
I do have bad days occasionally, but I try to, for the most part, look at
it that way.
Kevin:
This is Kevin, and one other point I'd like to make is that a lot of
people feel like when you're diagnosed with cancer that pain is going to
be an automatic function of the diagnosis and that there's no way around
it. You're going to suffer pain and, that's what you have to accept. I
think, going back to some of the things we talked about earlier as far as
being informed and being a good consumer, is understanding that it does
not have to be that way and that through some self-advocacy and other
ways, you can change that and not accept the fact that pain is always
associated with cancer.
Myths And Facts About Pain Relief
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Michael Samuelson:
I think you bring up a really good point, and that's this whole issue of
all these myths and facts around pain and pain relief, particularly from
individuals who sit on the outside and really don't understand because you
can't really see it. You can't measure it. Susan, as a charter member of
the Cancer Pain Initiative and as a professional caregiver and a
caregiver, obviously, with your brother, what have been some of the myths
that you have experienced, and what are the facts of proper pain
control?
Susan:
Well, one of the main myths is about addiction. People feel that they'll
be addicted. As Kevin said, they think that pain comes with the
diagnosis, and it very often does not. They feel they have to tough it
out, and they are very stoic when they don't need to be. They feel that
if they report the pain to their physician that perhaps they'll be seen as
a complaining patient and in some way that will impact the kind of care
they get.
Michael Samuelson:
Susan, do you see this as a gender issue? Is there a difference with the
old macho man who wants to bite a bullet?
Susan:
No, I actually see it kind of across the board, and I think it's
interesting that a lot of the myths are the same for the patient as they
are for the health professional. And you know, this whole idea of
addiction, there's a lack of knowledge not only by the public but by the
healthcare professionals.
Michael Samuelson:
Again, it's that issue of knowledge and education. Yvette, as a survivor
and your work with American Pain Initiative, what's been your experience
with the myths and the facts of pain relief, and is it an issue of
education?
Yvette:
I think it is. I totally agree that one of the big myths is about
addiction. That people hear about pain medication and they automatically
assume that they're going to be addicted, because they're just not
educated about how effective the medications are. They're not aware of
how much they can participate in their pain management plan. That's one
of the things that the American Pain Foundation really does a lot of work
around, is getting through those barriers. I think one of the big
barriers is lack of education about a lot of things, about myths and
misconceptions, about the rights that pain patients have to have their
pain addressed, their right to information and their right to participate
in a treatment plan.
Michael Samuelson:
This is for both--well this is actually for all of you, and that is this
whole question of addiction and pain, particularly for the healthcare
professional, and Susan, as a nurse you can reflect on this, but certainly
there are situations for people to abuse, where people will request more,
but again, it's such a subjective question. What is this whole issue?
Is there any legitimacy to the argument that we have to be careful, or we
have to provide under as opposed to over?
Susan:
Generally, no. You know, of course, there is the challenge of someone
that is addicted developing cancer and needing to have pain relief, and
that is a particular challenge, although it can be handled, but almost all
patients can be treated properly without any addiction as an
aftermath.
Michael Samuelson:
Well, Lynne, you expressed that you do have these questions, particularly
from your mother, that will come up with this. How do you handle these
concerns? Both actively, how do you handle them, and internally how do
you handle them?
Lynne:
Well, if I'm having a good day, I ignore her. [laughs]
Michael Samuelson:
[laughs]
Lynne:
And if I'm having a bad day, she gets a lecture on what's going on in the
arena. But like I mentioned earlier, there are such misconceptions. I
mean, I even have had people say to me that how rich I could be because I
could just go on the street and sell the drugs I get.
Michael Samuelson:
Yeah.
Lynne:
Which is--they don't obviously understand cancer pain, because I wouldn't
be helping myself. And there are days where I do get concerned, not so
much about addiction, but I'm so young. My doctor actually told me I was
better off taking the OxyContin or like the Percocet than the Tylenol over
a long period of time because of the implications to my liver and things
like that. So, I've tried to find some other methods to help in addition
to the pain medication, like massage therapy and some of the complementary
therapies, which do tend to help, but insurance coverage is also an issue.
And I have--you know, access to the drugs is also an issue. I for a long
time was getting the non-generic form of a particular type of pain
medication because I had my health provider convinced that I was allergic
to the generic form because I didn't think they were working as well. I
just couldn't get them at any of the drugstores, and at one point I was
going to five or six drugstores sometimes. The pharmacist told me I was
better off with the generic drugs because people are very afraid of theft
at drug stores because of all of the media, and for some reason if it's
the name brand of the drug the pharmacies tend not to carry them a lot
because they think they're going to get robbed more often. So in this
area, every time there's an OxyContin theft or whatever, it makes the
front page of the newspaper, and it just drives me crazy because I worry
about the people that might have just one pharmacy down the street that
doesn't have access that they can barely go and get their pain medication
at. And they're talking about passing laws and legislation in order for
people to even get their pain medication.
Kevin:
And this is Kevin, and I think a lot of times these myths kind of get
caught up in political and religious agendas and get misused for other
types of gain within these agendas. I think that, going back to some of
the other things that Susan had said before, that there definitely needs
to be better education, but I think that people as a whole who do suffer
from chronic pain need to kind of form a collective voice and let people
know what is truly--like Lynne is talking about, what's going on in their
community, what they are experiencing in their community.
Yvette:
And this is Yvette. I also wanted to add that because patients and
healthcare professionals don't fully understand it, what is also labeled
as drug-seeking behavior is really relief-seeking behavior. People just
want relief from their pain, and sometimes, unfortunately, they're put in
a position of having to go through extreme measures to be able to get pain
medications.
Michael Samuelson:
Well, you guys are bringing up some really, really important questions.
One of them was mentioned, I think, by Susan, or perhaps by Kevin, but
that is the introduction of complementary [pain relief] as well, and by
complementary I mean complementary, not instead of. But from those of
you, Susan, and from Yvette, who are affiliated with pain initiatives,
what kinds of recommended non-medical or noninvasive therapies have you
found to be effective for pain?
Susan:
Really the kinds of things like massage--stress management, relaxation,
imagery.
Yvette:
Biofeedback.
Susan:
Yeah. All of the kinds of things that will what you just said, complement
your medication treatment and allow you to have an improved quality of
life.
Lynne:
Acupuncture has been now proven to help with pain as well, and a lot of
patients are starting.
Susan:
Right. A lot of hospitals have certified acupuncturists on staff now that
provide treatment to patients in pain very successfully.
Michael Samuelson:
If I'm tuning in to this and I'm reading the transcript, and there are so
many places out there that I can go for information that it's confusing,
where would you recommend, two or three places that somebody could get
more information about proper pain management?
Susan:
Well, the American Cancer Society is one very good source.
Yvette:
The American Pain Foundation is another one.
Susan:
The American Pain Society is another one that has very good information.
Yvette:
Yeah.
Issues Of Addiction And Dependency In Pain Treatment
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Michael Samuelson:
This whole issue about under-treatment of pain is something that is
appearing more and more in the newspapers, and again, a lot of it, as you
folks have said, deals with education, and I think a lot of it, too, is
this confusion around addiction and dependency, and also perhaps the idea,
so what? If you're in intense pain and the risk of addiction or
dependency is there but you need relief, what is the difference between
dependency and addiction? Yvette or Susan, who are involved with those?
Is there a difference?
Susan:
Well, there is the difference where you can develop a tolerance for a
drug, where you are given a drug and then the dose has to be escalated
because your pain isn't relieved at the level it's given, so it's given
at--the dose is upped, upped, upped. And very often, as that is
happening, the patient and/or family may feel that they're becoming
addicted because their dose has to be increased so much, when actually
their body has adjusted to the drug and therefore they need to take a
higher dose to get the same amount of relief. But physiologically they
are not becoming addicted.
Michael Samuelson:
Uh-huh. And Lynne, you've been in a chronic state for a long time with
this. Are you satisfied with the way that your pain is being treated, and
have you found this phenomenon of requiring more as time goes by?
Lynne:
I've found that I do have a tolerance to the drugs where they don't work
as effectively as they could be, and I am hesitant, to be honest, to
increase the medication, and unfortunately, it sounds awful, you know,
generally push myself, and the other thing is it's almost a barrier, you
know, listening to Susan. Back when I was in the hospital and I was
treated, when they increased your pain medicine it meant the person was
not probably going to live and they didn't care, because back then the
levels would increase because they were trying to make the patient
comfortable because there wasn't a whole lot of pain management going on.
So there's also a lot of misconceptions that pain is associated only with
end of life. There's hundreds, or thousands probably, of people living
with chronic pain on a daily basis that have twenty or forty years to go.
And then on the other hand there are people dealing with end of life
issues, but I have more of a complement of medications. I was able,
finally, to get in to a neurologist that was able to complement the pain
medicine, and so I've been able to have more of a mixture of drugs rather
than increase one drug, and that was more of the problem, that is, was
that one drug was just touching one type of pain, and they finally
discovered that I have more than one type of pain, which is why one drug
isn't working. But I did think about that when Susan was talking about
increasing.
Susan:
[laughs]
Lynne:
That you can't help but wonder is it me and that I'm getting used to just
popping pills? Like I said, that old myth of the more medicine you get,
the sicker you are.
Yvette:
This is Yvette. I think language is very important, and people often mix
the description of physical dependence with addiction, and physical
dependence is something that can happen. It's just the state of
adaptation. The body gets used to a certain level of pain medication, and
at that point the patient should have a discussion with the doctor about
things that can be changed, different medications that can be tried. The
hallmark of addiction is really impaired use or compulsive use, and the
use of medication despite harm. It has been shown in the literature that
people who take pain medication for their pain are hardly at risk for
developing any kind of true addiction, but I think that people are really
afraid of that for some of the reasons that we've talked about. The old
myths that any kind of pain medication will lead to an addiction, and
everybody has terrible images of what drug addicts are supposedly like.
And there's not enough education around the differences between,
addiction, for example, and physical dependence, and helping people
understand what is natural and what is sort of biologically normal.
Michael Samuelson:
What I'm hearing from all of you, and I think that this is critically
important, is that both the presence of pain is subjective as well as the
individual's response to treatment. So the idea that there would be a
specific formula for everybody's pain seems to be absurd. That everybody
responds differently, and again, the language part of it is critical, as
you just mentioned, Yvette, to be able to express yourself and to
communicate and take control of it. These are all very, very important
parts of it. Susan, are there any things that a caregiver can say or
actions that they can take to get proper pain treatment for their loved
ones when the individual either can't or doesn't have even the
intellectual capabilities of expressing what their needs are?
Susan:
I think that a caregiver can really keep good notes, can be very observant
and report subjective as well as objective observations that they make
about their loved one to the physician, if the patient isn't able to
communicate. If they are, then they really need to be very clear as to
what kind of relief that they got from the medication and just take really
good notes and be very clear in the communication and ask a lot of
questions. We tell people to keep a journal. Write down all your
questions. All the things that you would do to participate in the care if
you could, you have to turn that over perhaps to a caregiver, friend or
family member to help you.
Michael Samuelson:
We're coming to the end of this, and what I would just like to say is,
first of all, I could go on for a long, long time with this. You have
been wonderful; all of you, in terms of sharing your heart and your
feelings and your experiences, and again, this is what the cancer
community is all about. It's the collective energy and experience and
loving and caring that we feel that allows us to reach out and help so
many people that we can't see. So, I thank you so much for your energy
and for your time and for your commitment to doing this. This brings us
to our CareCast close, and I want to remind you that the recorded audio
portion of this broadcast will be available tomorrow on the Cancer
Survivors Network, along with a link to a list of resources that may help
you with your cancer pain issues. When ready, the written transcript of
our discussion today will be posted as part of our permanent talk shows
and stories library. Also, many of our guests, along with myself, are
members of the Cancer Survivors Network, and our screen names will be
posted with the transcript of the broadcast, and by clicking on the screen
names you can see our personal web pages and send us a message. We have
many active discussion boards on the website, and we invite you to
continue this discussion and connect with each other, and again, let those
without computers know that they can listen to our entire show library,
toll-free at 1-877-333-HOPE. That's 1-877-333-HOPE. So write that down.
One more time, 1-877-333-HOPE, and all of you, Lynne, Kevin, Susan, Yvette,
I want to thank you so much for your participation, and I truly appreciate
everything that you're doing.
Lynne:
Thank you.
Kevin:
Thank you.
Susan:
Thanks very much.
Michael Samuelson:
And for the Cancer Survivors Network, this is Michael Samuelson.
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