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Bill
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Annette
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Gene
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Dr. Harpham:
Hello, and welcome to the American Cancer Society's Cancer Survivors Network. I'm Dr. Wendy Harpham, your host. Today I will be talking about pain, with three cancer survivors from across the country. As a doctor of internal medicine, and also a ten-year lymphoma survivor myself, who has experienced acute and chronic pain related to my cancer, I'm keenly aware of the need to talk about pain. Studies indicate that pain is experienced by 30 to 60% of cancer patients during active therapy, and an even higher percentage of patients with advanced disease. Unrelieved pain is incapacitating, and can interfere with all spheres of life. Not only can pain make it difficult to eat, sleep, move, think, or interact with others, unrelieved pain can interfere with coping and adjusting. Simply put, pain is a physical and emotional burden for patients. The good news is that advances in pain management have made it possible to provide pain control for the vast majority of patients. The bad news is that many cancer survivors continue to suffer pain, during and after treatment.
Today's show is one of several shows on the Cancer Survivors Network that are devoted to dealing with cancer-related pain. First, let me briefly introduce our three guests. And then I'll open it up to discussion as we talk about being informed prior to treatment, about possible pain, talking about pain with your healthcare team; understanding the emotional and social toll of pain; dealing with the emotional toll of pain; both acute and chronic; making and accepting lifestyle changes to accommodate pain; overcoming the fear of pain; dealing with uncertainty about future pain.
Our first guest is Bill, a 57-year-old forklift operator and father of five, from Georgia. In 1995 Bill was diagnosed with prostate cancer and was treated with radiation seed implants, followed by 36 radiation treatments. In 1998, a bone scan confirmed that the cancer had spread to the bone. He was placed on monthly shots of Luprin, a chemo hormonal type of drug, and daily doses of Cathadex. In 2000, he was started on a newly approved drug, designed to strengthen the bones and relieve bone pain. Now, before his diagnosis, Bill was a very active man. Ever since his diagnoses, bone weakness, spine fractures, and bone pain has severely limited his physical activity. His persistent pain has required daily pain medication, which, itself, has caused a number of significant problems. During our discussion, Bill will talk about the effect of pain on his life, and how he has dealt with it. Welcome, Bill, to our discussion.
Bill:
Thanks a lot. Glad to be here.
Dr. Harpham:
Glad you're here. Joining us from Florida is Annette, a 31-year-old survivor of AML, a type of leukemia. Annette is married and the mother of a young son. In 1994, while Annette was beginning to work on her Master's degree, she noticed that she was unusually tired and short of breath. She also noticed tiny bruises on her chest. She attributed her symptoms to her weight loss regimen. After a few weeks, her family urged her to go to the Emergency room, which she did, reluctantly. Blood work revealed leukemia. After being presented with her treatment options, Annette decided to enter a clinical trial of very aggressive chemotherapy. She experienced side effects of nausea, vomiting, constant diarrhea, high fevers and chills. After 3 rounds of treatment her leukemia was in remission, but the celebration was cut short when she developed severe shingles, which made it difficult to walk for three months. It was a year after her last treatment before the painful effects of treatment subsided. She was able to resume her studies and start her family. She is now a mother and she remains in remission. Hi, Annette, and welcome to the show.
Annette:
Hi. Thanks for having me.
Dr. Harpham:
From Washington state, we say hello to Gene, a survivor of CML leukemia. Gene is a 63-year-old lawyer. He is married to a cancer survivor and is the father of three grown daughters. Gene, like Bill, had a very active lifestyle before his cancer diagnosis. In 1997, while exerting himself in recreational activities such as snowshoeing or bicycling, Gene felt unusually exhausted. Blood work revealed an abnormality that was subsequently diagnosed as leukemia. Gene was treated with daily, self injections of interferon for three years. During that time, he suffered from a constant, debilitating fatigue. As a result of the treatment, he now has chronic pain syndrome, due to nerve damage. This pain has increased since he went off the interferon, a year ago and he has to take pain medications every three hours. Gene has gone to great lengths to understand and deal with his pain. He'll have much to share with us today. Thanks for joining our show, Gene.
Gene:
It's nice to have a chance to talk with you all.
Dr. Harpham:
Let's open our discussion by talking about the issue of being forewarned about pain related to diagnostic tests or treatment. Pain is a common accompaniment for many diagnostic interventions, such as bone marrow biopsies and surgery. Pain often also accompanies many anti cancer treatments, such as the discomfort of having intravenous lines inserted, mouth irritation from chemotherapy, joint pain, headaches, and so on. When cancer treatment is complicated by infections or blockages, pain can be one of the symptoms, and of course, cancer itself can cause pain. Sometimes the pain is predictable, other times it's unexpected or unusual. Some pain is temporary, others chronic. Bill, when you were diagnosed with your original prostate cancer, which was felt to be localized and curable, how much were you told about the possibility of experiencing pain.
Bill:
Well, for me there was very little information about pain. Well, I knew that if I had the surgery, sure there's gonna be some pain following that, but there was no information from my urologist at that particular time about the pain that would follow that after the healing process had begun.
Dr. Harpham:
What kind of pain did you have, Bill?
Bill:
Well, in the area where the surgery was, there was pain, then all of a sudden in my back and my thighs and my hips.
Dr. Harpham:
So how did you deal with your pain?
Bill:
Well, uh, I began to think it was because, well, you know, I'm a little bit overweight, and I thought it was because I'd been very inactive, because I couldn't coach football anymore, you know, I couldn't even cut the grass. So I thought perhaps my inactivity was contributing because I couldn't move about and then when I did try to move about, I was experiencing all this pain. But I found out later that the pain was caused because the weakness in my bones had caused some fractures in my back, which was revealed by a scan, later on.
Dr. Harpham:
If you could start over again, Bill, what would you have wanted to be told about pain?
Bill:
Well, if pain is gonna be part of it I would like to know so I could be ready for it, you know. A little bit of pain is okay, I guess it is, but extensive, I mean minute after minute, hour after hour, even at night, turn over in the bed was painful.
Dr. Harpham:
Well, what are the advantages of knowing about pain ahead of time, Bill?
Bill:
Well, had I known that, I could have prepared myself mentally. And also maybe talk with my provider about what I could do to lessen the pain or , of course, he restricted my activities to the point where it almost became, for lack of a better word, depressing, you know. So I'm thinking had I had information from my provider, I could have been better prepared to deal with it and that caused problems in the house, I was just like a bear, and the kids were saying, should I try to talk to Daddy right now? You know, and stuff like that. But later on I learned that this was part of it and I began to feel better personally, you know, talking to the family.
Dr. Harpham:
Annette, you went through a grueling treatment with many painful side effects.
How prepared were you for the experience of pain and for dealing with pain.
 Annette:
Well, I have to admit that I'm definitely one of the wimpiest people in the
world. Before experiencing the leukemia, I was terrified of any type of injection,
shots, anything like that. And they totally did prepare me by giving me the
clinical trial protocols and having me read all of the side effects that I would
have to go through possibly. And of course, I don't know if anybody's ever read
a clinical trial, but when you read all these side effects, you go, like, "can
I have ALL of these?" And shocked by that. Because you know, there are so many,
there's like neurological damage that you can have; of course your hair loss;
the diarrhea, the vomiting; I mean, everything. You're reading this and you're
saying, "these toxins are going in my body? And this is supposed to help me?"
And you know that you're gonna be in pain. So, I was, in a sense, psyched to
the pain, but I was afraid of the pain. So that was my problem at the beginning,
was my fear.
Dr. Harpham:
Before you started treatment, Annette, did anyone talk with you about how to prepare for the pain or what would be done for the pain? Before the treatment?
Annette:
Yes, they said that they would stay on top of it and that they would and they were so good, the nurses and doctors were so good about coming to me and saying, "okay, now, where are you having the discomfort? We can give you this medication to help you." And I was very quick to ask for any type of medication that would help me feel better. So I learned very early on that it was okay to ask for shots of Demerol or to have some Ativan just to help me with the nausea that I was having or even the anxiety that I was having, just to know that. And then I could take, then they could give me a sleeping pill to help me sleep through the night, and I learned quickly that I could trust my nurses and doctors to stay on top of the pain. Even though they couldn't control it, I mean they couldn't completely control the pain. But they were very good to let me know what drugs were out there that could help me.
Dr. Harpham:
What about the pain of your shingles after treatment? Were you prepared at all for that?
Annette:
No, I wasn't prepared for that. I knew that after my third round my body had taken, I mean it had taken its toll on me, with all the chemotherapy I'd had previous, and I think my third round was definitely my worst round, because I just physically was completely exhausted and down to complete nothing. I mean, I was just a walking zombie. And to experience that, where I wasn't able to walk for three months, because I had such sciatic nerve pain on my left side. I wasn't prepared that it was gonna be that bad. And at the same time I was experiencing that, I had to make a decision as to whether or not to have a bone marrow transplant. And that was really weighing on my thoughts and in my mind a lot, too.
Dr. Harpham:
In what way?
Annette:
Well, here I was experiencing the side effects from the chemo and I was thinking, "do I want to have a bone marrow transplant?" And I knew that I wanted to be able to have children and then I knew that I might have to go through even more pain. And I just wanted to research it more and see if that was the best route for me.
Dr. Harpham:
So how do you think your concern about pain affected your decision?
Annette:
I think it was a partial part of my decision. I had been through enough. I felt like I had to set a limit for myself, and I didn't know at that time that I could go through something so quickly again, and after that third round, it got me. And I knew that I was in control of my life and I was in control of the decisions I had to make for myself. And I didn't feel physically ready to go right into something else, another treatment right away. So, it was good for me to talk with other doctors throughout the country and get advice from other doctors. And then research it and go to the library and read up about it and see what I should do if I relapsed and that type of thing, so it kind of alleviated that fear in me. So that, I said, I don't have to go through more pain, I can just get through the shingles, and hopefully go back to school and have a family and don't have to worry about this anymore.
Dr. Harpham:
Annette, if you met someone who was about to start treatment like yours for AML leukemia, what would you tell them about pain?
Annette:
Well, it's interesting that you ask that, because on a daily basis, I talk to
people about it, because I work for the Leukemia/Lymphoma Society. And by doing
that I'm a patient services manager, and when I talk to people about their fears,
I pretty much let them know and clearly state that they should talk to their
doctor. They should definitely open communications with their doctors and nurses,
and talk about the needs that they have, and also they need to state that they
might be afraid of the painful procedures and what possible medicine they could
take to alleviate the pain.
Dr. Harpham:
Very helpful. Very helpful. Gene, compared to bone marrow transplant, you received the milder of your treatment options. How prepared were you for facing pain?
Gene:
I wasn't prepared at all, because at the time that I began the treatment with interferon, there was little knowledge about neuropathy being a result of taking interferon. And in fact, it apparently only occurs in a small percentage of the patients. I've been told 5%, but I have no idea whether that figure is accurate or not. So I actually probably would have discounted anything anyone would have said, anyway, because you always figure you're gonna be in the 95% category, not the 5%, and that is what I thought at the time. Although nothing was said to me about it, at all. And I've often thought back, would it have mattered, you know, when you're fighting really for your life, almost anything seems to be acceptable. If you feel that you've got some period of time where you can still have some meaningful life, if indeed you're faced with a situation of not surviving or surviving in a condition in which you could not really say you would enjoy life, it might be different. But I think in most instances, people are gonna take the avenue, and I did take the avenue, at least, of figuring I've got to try to see if we can get this disease in control.
Dr. Harpham:
Right, so dealing with the disease was the immediate priority?
Gene:
Yes.
Dr. Harpham:
Now, when you talk to newly diagnosed patients, what do you feel that they should know ahead of time, before they start treatment, about pain?
Gene:
Well, I think, because again of the small percentage of people who have neuropathic problems as a result of taking interferon, I guess I'd have to tell them it was a possibility, but the other alternatives are not any more appetizing. I'm going through with a friend now who has CML in very late last stages, and I can tell you whatever pain I have experienced, what he's gone through in the last three months simply is, makes my pain very insignificant.
Dr. Harpham:
Well, I mentioned in the introduction that too many patients do not benefit from available measures to reduce or eliminate cancer-related pain. And studies suggest that many factors contribute to this gap, one of which is poor communication between patients and physicians. I'd like to now focus on what patients can do to encourage effective communication about their pain with their doctors and nurses. And I'm gonna start with Gene, because you've dealt with this a long time, and I think you've learned some ways of communicating well? How do you explain how did you explain, how do you explain, your pain to your physicians?
Gene:
Well, I think it's not only explaining what your pain is to your physician, but finding out how much your physician knows about dealing with pain. Because we all assume that every doctor in the world is going to know how to deal with pain, and I think the reality is that pain is something that we're just beginning, and many doctors, are just beginning to learn how to deal with. I found that the most effective thing for me was actually to go, and it was recommended by my oncologist, that I see someone who specializes in pain relief. And I went to a pain center at the University of Washington, had outstanding care, and felt that I was really dealing with someone who had dealt a great deal with pain. And knew what is likely to work and what wouldn't work and was willing to experiment and see what would work with me.
Dr. Harpham:
How did you find out about the pain center?
Gene:
From my doctor, but I also knew about it independently. But I think if your make inquiries in your medical community by calling a major local hospital, for example, they are likely to tell you where there is the closest pain center.
Dr. Harpham:
Well, before we get into treating pain, in order to begin dealing with pain, you need to be able to talk about your pain. And Gene, can you tell us specifically, how did you begin to relate your pain experience to your physician?
Gene:
Well, in the first place, I would tell them what it felt like, but they would give me a test, the kind of neuropathic illness that I have is primarily focused in my feet and my hands. And as I kept using interferon, the nerve damage and pain kept advancing up my leg, and resulted in great numbness in both my feet and the ends of my fingertips, so much so that it was hard for me to button my shirt myself.
Dr. Harpham:
So you would tell them actual activities that you could no longer do?
Gene:
I would do that, and then they would give me physical tests. They'd use a pin and they would determine how much numbness I had. And I think as you said, Dr. Harpham, in your introduction, my experience was that as my, as the nerves regenerated after I stopped taking interferon, what happened with me is that the numbness went away, largely, and so I could feel the pain better.
Dr. Harpham:
You actually bring up a very important point, you said the doctors could test they could do a pin prick and all that. Well, those are objective tests of function, but pain is a subjective experience. And there is no blood test or scan for how much pain you have, which is why communication is so important. So you mentioned actually activities you could no longer do because of pain.
Gene:
Correct.
Dr. Harpham:
Did you do anything else to calibrate your pain?
Gene:
I do know that although it remains subjective, I do know that I think at one point my doctor asked me whether or not on a scale of one to ten, where I would rate the pain.
Dr. Harpham:
And did that work for you?
Gene:
Well, I suppose it helped a little bit in subsequent visits to determine whether or not you feel the pain is getting worse or better, or more tolerable, I guess rather than worse or better. And I think that was helpful.
Dr. Harpham:
Annette, how did you explain your pain to the physicians?
Annette:
Well, I wanted to talk about what Gene just said about being more tolerable,
because I agree that you know it is so subjective when you're giving on a scale
of one to ten. And I mean, that's what they would come in and they would say,
"okay, Annette, today how do you feel on a scale of one to ten?" And yes, as
I grew more tolerating of the medication, I might say six instead of nine, because
I'm getting used to it and the pain is not as bad because I'm used to it. So,
for me, it was just the pain scale was how they introduced it to me. They would
come in and do this pain scale thing with me and they would say, okay, on a
scale of one to ten. But they were on top of it in the sense that this was a
teaching facility that I was at, and there were interns and fellows. And everybody
that would come in and the whole class would be in there, examining me, and
talking about well, what do you think it could be? And what medication would
you recommend and...
Dr. Harpham:
So how did you get over the obstacle to talking about your pain with your doctors and nurses? What did you do to make it easier for them to understand your pain?
Annette:
I don't know what I did necessarily that made it easier to explain my pain. I think just letting them know that I was afraid of the pain and wanted to do whatever it took to not do it, and then you know, please help me not to be in so much pain. I think what I look at now and almost regret, is that I did complain so much. But I was almost in a coma some of the time, that I was so tired and so fatigued and so exhausted that I just slept through so much of my experience in the hospital, because I'd have to be in the hospital a month at a time or six weeks.
Dr. Harpham:
Did you feel that your health care team empathized with your pain? That they were sensitive to the effect of your pain?
Annette:
Oh, yes. I do, and I think that I was lucky in that respect. Because I do, I had this one nurse that would come in with me and she would even do relaxation techniques with me. And she you know, would say, you're on an elevator and you're going down, deeper and deeper, and she would do almost like hypnosis with me to help me not feel the pain. So I had really caring nurses and staff that were right there. But I think what was different in my case that's different for a lot of people, is that I was in the hospital the whole time. I mean, I didn't go home. They didn't let me go home, because my counts went down. But when I did go home, any little symptom I had, I always had family members or friends who would say, okay, you know, they were advocating for me. Okay, well we need to go get that Demerol for you, or we need to tell your doctors so we can get some pain medication for you.
Dr. Harpham:
Well, that's the next topic, which is, in order to deal with pain, you need to be able to communicate well, not only with your health care team, but with the important people in your life. The people who are advocating for you such as your family, your friends, or co-workers. Annette, how did you communicate with your family and your friends about your pain?
Annette:
I'm glad that you asked that, because there was a specific thing I think we
talked about this just a couple of days ago when we were talking about the show.
And what happened with me that was a difficulty that hurt me emotionally was
the conflict that I saw between my mom, who I love dearly, and my husband, who's
my soul mate. When both of them would just agree about you know, what to do
for me to help me not be in pain. And what I mean is, my fevers would go so
high that it went up to 105. And I would have really bad rigors, and almost
be like in a convulsion, where my whole body was shaking, and I was in pain
that I thought I was dying, I really thought that that was the time that I was
just gonna die. And I was so cold my mouth was moving, my teeth were chattering,
I would say, "Please warm me, please do something to warm me." And my husband,
the loving man that he is, would take all the covers and microwave them in the
microwave and bring blankets to me and cover me up and then he laid on top of
me, and he felt that that was gonna help me. But when my mom came in, she said,
oh, no, if her fever's that high, you need to take all the covers off and put
her on ice! And this is what has to be done and blah, blah, blah.
Dr. Harpham:
And was there some tension with them having different approaches to dealing with your discomfort? And how did you work your way through that?
Annette:
Oh yes. Well, what happened was it didn't work its way through that actual round of chemo. It was after that round that we all went into family therapy, and I said, "Look, you guys, you've got to come to grips with this, because it's a struggle for me to see the two people I love the most in the world, fighting with each other. Because I'm the one going through this, and I completely see both of your sides. My mom wanted to care for me in a motherly way, doing what was right but my husband wanted to comfort me. So it was like this struggle. So it was having to have somebody intervene and mediate for us to help us with that, and I think that can be a common problem with people and their families.
Dr. Harpham:
Since you had pain for such a long time, did you work out a system for communicating with your family when you had pain? How much pain you had, when you needed it relieved? That sort of thing.
Annette:
Yeah. Definitely. I was never left alone. I was always, it was almost like even when I was out of the hospital, my mom was with me or my sisters were with me. Or my mom would have a neighbor come over, because I would live practically at my parents' house while my husband was in school. So I would just almost like ring a bell, and okay, it's time to give Annette some more medication or it's time to clean out her Hickman or do something to help alleviate some of the pain she's going through. So, yes, I think that you have to be able to be humble, to be humbled by your illness, and accept the kindness of others, because you just have to let go of the struggle for me was that I was a giver, and I had to learn to take, and..
Dr. Harpham:
The pain forced you into that position.
Annette:
It did. It did. It was having, it was my life lesson. I really believe it. Because it humbled me big time, because I could not do it by myself. I could have never done it by myself.
Dr. Harpham:
Bill, talking about communication, first, communication with your doctors. How did you explain your pain to your doctors and nurses?
Bill:
Kind of like Annette and Gene, the scale from one to ten, you know, but being this macho guy, I'm thinking, well, you know, it's not really that bad, I can put up with it, so a lot of times I must confess, I really wasn't honest. But as time went on I knew that I had to have some help, you know maybe higher doses of medication or something else, so I started confessing to my wife first, and she said, "Baby, just tell them how you feel."
Dr. Harpham:
So you were able to tell your wife about your pain before you could tell your doctors?
Bill:
Yes. Yes. Because in the beginning I did not have an oncologist, all I had was just a urologist. So somebody suggested that, but I said, Well I don't like doctors, and I was practically denying my situation in a way. Because I was healthy person for most of my life, I was doing volunteer work in hospitals, in jails and community plus my job and raising four boys, playing ball and all that stuff, I could not be a weak person.
Dr. Harpham:
It was against everything you'd always been.
Bill:
Exactly. So I'm thinking I've got this image here so I'm gonna be this real strong person, and just grit my teeth and just ride this horse no matter where it takes me. But when I went to the oncologist, it seems they were more ready to see me as a total person, and deal with this pain. And the office was so lovely, I mean, I never been to a doctor's office like that. It was light, people were laughing, I went, Am I in a doctor's office? The people that did my labs, even though I wasn't used to needles, they made it seem like, "Hey, Baby, you can do this. You know, nothing to it. If this doesn't work I'm gonna use another type thing, a butterfly, you know...
Dr. Harpham:
did that make it easier for you to reveal how much pain you were really in?
Bill:
Yes it did, because it was almost like, they said, "look, we're here to help. There's nothing that you can't share with us." and I'm saying oh, no I'm okay. But the atmosphere and everything in that office was so great, that I knew that I could just take my burdens and just turn it over to them, because they were the professionals. I would say, "Look, I'm in bad shape with this pain."
Dr. Harpham:
So, having gone through this pain, Bill, what do you think you learned about telling doctors about pain?
Bill:
I would tell them immediately, from now on and I would not try to have a picture in my mind, you know, it's because I'm carrying a little extra weight, or need to get more exercise, you know. If I'm hurting, I'm gonna just come right out and say, you know, "I'm hurting, and it's about to get to me, and this is the area where I'm hurting the most," and I'd just blab it out, you know, now.
Dr. Harpham:
What are the advantages for you of being direct and honest with your doctors?
About your pain.
Bill:
Well, like I say, I've always tried to be this strong person. So therefore I look for as my doctor has been in the beginning a stranger, until I developed a relationship with him and also with my nurses, all of a sudden I'm finding out I can share, from the deep level, even the bad times. In fact one time I went in for one of my treatments, and all of a sudden a question just came over me, and I said I feel I just can't do it. He just said, "listen, no problem, no problem", tell you what, he took me to the room and sat down and talked with me and said, "tell you what, let's reschedule. Think about it, and I don't know why, I'm sitting there, I've done it before. But this particular time a dark cloud just came over me and I can't do this much hurt, blah, blah, blah. But then after they were so nice, sat me down and talked with me, just as patient as if I were their own child, in a way, so they let me know that they're part of the team that's gonna help me get well.
Dr. Harpham:
So the whole team's encouragement really made a big difference?
Bill:
Oh, yeah.
Dr. Harpham:
Now did you have any trouble talking to any of your family or your friends about your pain?
Bill:
Yes I did.
Dr. Harpham:
Can you talk about that?
Bill:
Well, see, ah, my family have always seen me a healthy person, never complained, rip-roaring, ready to go. I'm this guy to help everybody, you know. And when I started hurting, as a matter of fact, my baby son looked at me one day with this strange look, as if he was afraid to say something to me. And all of a sudden if I just begin to sit down he'd rush over to me and try to help me sit down, try to help me get up. And I'd try to sit down and explain to him that I do have this pain and that time it's worse than others, and that there are times when I'm able to bear it, but that these other times, when it just, oh me, it just, and I would use hand signals to my boys and I would snap my fingers or something so they would know I need some help there. But I have some friends that it was extremely difficult, because prostate cancer in African American men is a no-no, you don't talk about it.
Dr. Harpham:
Why is that?
Bill:
Well, we got this image that we're this virile, strong, guys, that you know, you can't knock me down.
Dr. Harpham:
Bulletproof.
Bill:
Yeah. Superman. So therefore I'm gonna grit my teeth and just ride this thing out. And at three o'clock in the morning, oh, wow, the depression, the discouragement, and you want to talk about it in a way, but these guys are talking about the Superbowl, they're talking about the final Four, they're talking about flying above the rim, you know, and you feel all growl, growl, nobody wants to hear about my pain. But I found a way to communicate to them by just simply saying to them, "Hey Bro, if you don't get checked, if you don't watch your diet, you're gonna be sitting there just like me, watching everybody else get on the line and play. And all you can do is yell encouragement from the sidelines, and it hurts.
And also what I've done our office, doctor office, has free cancer screenings once a year, and I'm going to my community, my churches, and walk the street, and we have gotten people in once a year to get tested. The complaint I hear is what the test costs, I don't have insurance, blah, blah, blah, and I say, "every excuse has been removed. You don't want to be like me next year, or six months from now. So let's get in and get checked so we can be better people." And an opening like that, they say, I gotta go, just tell me where to go." And this pain pushed me to the point where I'm not afraid to say to a group of men, sometime I'm standing in the grocery line waiting, and there's a bunch of guys sitting there talking. And I say "hey man, you about 40-42" and they say, "yeah man, what's up" and I say" You look pretty good. Have you had a PSA?" "What is a PSA?" then I know I got to talk to this person.
Dr. Harpham:
So your pain has actually motivated you to reach out to other people.
(Bill says yes) You know you mentioned that you had a self-image before your cancer diagnosis and the pain has been very much against that self-image. How did you see yourself when you had pain, and how did you deal with that changed image of yourself?
Bill:
Well, it was extremely difficult. Because a lot of activities I couldn't do anymore. So I tried to overcompensate on other things that wouldn't show my weakness what I thought was a weakness. Like coaching football, for instance. You got to be on your feet. Running up and down the sidelines screaming at the referee. Stuff like this. So I would try to compensate by telling "hey, go talk to that guy. I'm gonna over here and get a drink of water and I'm gonna sit down for awhile." Something like that. But I found that even sitting down I was still hurting. So I had to make up my mind to deal with this thing from a real point of view, and not make up this fake stuff any longer. So I just came to grips with it, and I said it doesn't matter what anybody else thinks about I'm hurting, I've gotta be real with it, I'm tired of trying to impress people, of being this great guy...
Dr. Harpham:
And what happened with your family when you took this open, honest expression of your pain?
Bill:
Oh! They were so supportive! I mean I've got four sons and my daughter's the oldest one, and she's in the medical field, and she said "Daddy, you should have told us. We could do this, we could do that, you don't have to do this." I'm thinking, "Wow!" and I'm thinking, I was always, like Annette, the giver I was always the go-getter and here I am in a position where I needed someone to care for me and it was extremely difficult for me to accept that role. I mean I cried on many nights. I'm being honest, I cried on many nights, because I missed appointments or in my volunteering especially in the meetings -. And people would call and say how you doing? "Great baby", "miss you", "yeah, yeah, catch you next time", you know. But my family, when they found out how bad I was really hurting, they came to my rescue. And I tell you, it was very humbling because my oldest son came to live with me for a month and did the things that I could not do, and we even got to know each other a whole lot better. I thought I knew him.
Dr. Harpham:
Wow. Well, it certainly takes a lot of energy to do things that are really too hard to do, and it takes a lot of energy to keep up an appearance of something that's not really the way it is. You know, Gene, you were very active, too, so your self image, I'm sure, was tied in to all your athletics, and after your cancer...
Gene:
Actually, Wendy, unlike Bill, I've been a wimp since birth. (all laugh) so I've had a lot of years to come to terms with the fact that I am. I didn't have any trouble yelling and screaming...
Dr. Harpham:
and letting people know being very honest about how much pain your were in.
Gene:
Well, I would tell only my close family and friends about it, because, in my case I actually didn't find telling many more people about it, it was helpful. I think that others have said this beside me, but I actually have found that the more I get interested in other things and the more I don't concentrate on my pain, the more I find I can almost to some extent mentally put aside the pain. (Bill says yeah) as long as I'm concentrating on something else that's interesting.
Dr. Harpham:
So, distraction is actually like a medication, it eases the pain.
Gene:
Absolutely. It's better. It's better than any medication that I take.
Dr. Harpham:
What else do you do to take care of your pain?
Gene:
Well, of course I think unlike Annette and Bill, I went through a long period when we didn't expect this pain to occur, so when it started to occur, I went through a long period of experimenting with a variety of drugs. It took a long time to come up with a combination of medications that was of help to me, and then what I've learned, it was only of so much help that we had to do more than that. And we had to do a lot of experimenting before I got to the correct medications, the correct dosages that worked for me. I also overdosed. I had to make a choice in my medications of whether I would take enough medication so I still would be with it and could bear the pain, or whether I would step it up to the morphine level which I tried for two days, and when I couldn't complete a sentence after I got to the middle of it, I decided that wasn't what I wanted, and I put up with the pain.
Dr. Harpham:
You had to decide your tradeoff.
Gene:
So my tradeoff was, "cut off the peaks of the mountains, deal with the mountains of pain but cut off the peaks, and still be able to function at the level that you can function," which is different from what I used to be able to do.
Dr. Harpham: So it sounds like your expectations or your goals changed. No longer a hundred percent pain free existence. Talk about that a little bit, how your expectations changed.
Gene:
Well, number one, I had to change the kinds of things I could do. I used to love to do walking and other kinds of activities which I can no longer do because of the pain in my feet. I love to play golf. Essentially between the pain, my loss of sensation in the hands, and the slight imbalance I have as a result of the medication, I can't really play golf any more. So I've had to turn to other activities and the other activities have been, I can ride a stationary bicycle to that way I try to avoid what Bill confessed to over the phone about keeping my weight in line. I also got involved in other kinds of activities. I, this is my fifth quarter at the university. I'm taking adult education courses and all the kinds of things I wanted to learn about when I was in school but didn't have time for.
Dr. Harpham:
Besides changing what you actually do, Gene, how has pain changed your relationships?
Gene:
Uh, I think what it has changed my relationship at all, I'm slightly more withdrawn than I used to be. I think what it does is it makes your more circumspect, and maybe that's the aging process. You know, often it's hard to separate what relates to medication, what relates to illness, and what relates to aging. So I'm not quite sure what all has done that, but I do think I'm more circumspect than I used to be.
Dr. Harpham:
Does your pain affect your mood or your sense of hopefulness, your vision of the future at all?
Gene:
No, not my vision of the future because I am, as the lady in "South Pacific" used to say, I think I'm probably a "cockeyed optimist"...
Dr. Harpham:
Okay. But does your pain affect your mood?
Gene:
Yes. Well, it affects what I'm, yeah, absolutely, because when the pain severity is great, I really kind of have to concentrate on something very intense, and just ordinary conversation is not intense enough to overcome the pain. So, you have to kind of change your willingness to sometimes your openness as to how much you're talking about it, and you have to change sometimes what you're doing in order to just deal with a particular intensity of the pain.
Dr. Harpham:
Annette, when you were in pain from your shingles or your treatments, how did your pain affect your life, what you could do? You mentioned that you were in a wheelchair, actually, for awhile, but how else did it affect what you could do?
Annette:
Well. I mean, I had to drop out of my master's program, and that was a big change.
And my whole life changed. Because I had taken out student loans, so I couldn't
do housework, my mom had to get a cleaning lady to go into my apartment and
clean my baseboards and everything. Because my immune system was compromised
after having the chemo, and anything that I could catch, any infection that
I could get, they wanted to avoid. So I had a couple cats in my house and I
had to make sure that the house was dusted and that the air filters were changed
and everything. So that was humbling for me because I'm a clean freak and obsessive
and almost OCD, obsessive compulsive, when it comes to cleaning, and so it was
hard for me to relinquish this task.
Dr. Harpham:
What, then, could you still do despite your pain? Or did you shift your activities the way Gene did into some new activities that you wouldn't have been doing otherwise?
Annette:
Well, one thing that Gene said that I agree with 100%, is distracting myself from the pain. And the way I distracted myself and the things that I did do that I loved doing was seeing funny movies. I loved going to the movies so I still did that. You know, enjoying being with my husband, going out and having a nice dinner, even though food tasted like crap to me, (all laugh) but it was still nice to go out, even though everything tasted awful from the metallic taste in my mouth. And one thing, too, that I like to do, and I don't know about Bill and Gene, but I like to ride roller coasters. So whenever I would have a really bad experience, like if I had to have a bone marrow biopsy, I would go ride a roller coaster before my bone marrow biopsy. And just get in that state of mind like I'm a bird flying in the air, and when I was having my bone marrow biopsy, that's where I was, I was on Montoo at Busch Gardens, and I was riding the roller coaster.
Gene:
You can have my ticket!
Bill:
Mine, too! (all laugh)
Dr. Harpham:
Annette, how did pain affect your mood? If you were in pain, did that affect
your sense of hopefulness?
Annette:
I can say that I did get down and I did feel depressed and discouraged at times.
But there was an inner voice inside of me that kept telling me that I could
make it and that I was gonna conquer this. And there's more in my life for me
to do, and I knew in my life I wanted to have children, I had hope. I knew my
chances were slim for having children, I knew my chances were slim for even
surviving the acute myologic leukemia, because they gave me such sad stats when
they first diagnosed me. And they my doctor was really encouraging me to have
the bone marrow transplant. And that was definitely a maybe where I wouldn't
be able to have children, so I mean, my hope was still there, I still had that
hope, and that's what was able to distract me from it and to help me believe
that I could make it through.
Dr. Harpham:
So hopefulness helped you deal with the pain? Do you think the pain affected your hopefulness at all?
Annette:
At times. Definitely. At times it would really get me down, especially when I would have the high fevers, or when I wasn't able to walk. And I would think, is this gonna be is this the end of my life? Am I gonna live with this. Is this what I have to suffer with. But then, like I said, that inner voice kept telling me, "No, Annette, that you're gonna get through this. This is just a life lesson for you. This is just conquering your worst fear." And so that's what I kept in the back of my mind. But yes, it did, it did bring me down, and the pain was horrible.
Dr. Harpham:
When the pain was horrible, how did it affect your relationship with your husband? With your friends? With your mom?
Annette:
It was tense at times because my mood would be hormonal, almost, I would get angry and I would get upset, but then another part of me was thinking, "Okay, I can't do this to them. I have got to be nice." And sometimes I was to the point of being so nice that they couldn't believe it. And it was like I was being so sickeningly sweet that they knew something was wrong, because I was just like, laying there, "Oh, don't worry," or something, and they knew then that they needed to do something. So, yes, it affected my moods and my temper and my hormones and everything. My family got to see the worst and best sides of me, unfortunately and fortunately, at the same time.
Dr. Harpham:
Well, having gone through it, Annette, what do you think you learned about how to communicate with your family about your pain? What was your walk away lesson from that experience?
Annette:
My walk away lesson about this whole experience is, just learning to be humble. Learning to accept the kindness of others and to let my mom clean my house, or let my mom go in and redecorate a room or clean my closet or something. Something that bothered me because I wanted to be able to do it and impress her, but that was something that made her feel good and it definitely improving my house.
Dr. Harpham:
So it helped your mom deal with you pain because she was allowed or encouraged to do something?
Annette:
Exactly. It, I mean, it's also, you're right, it helps the caregiver, the caregivers feel like they're doing something, they're being proactive. Because they're seeing you in this horrible state, and I look back and I'm grateful that I was the patient, because if I had to watch my husband or my mom go through what I went through, I would be a basket case. I mean, I feel fortunate that I was the one who was the patient. Because my family handled it just beautifully, they were just my rocks, they were my foundation, they helped me. My faith in god and my family and my friends were always there for me, and that was humbling to me, but yet it taught me the lesson that I needed to learn, and that's to fill my cup up with the love of others. And to let life be about the love of others and being there for you to help you get out of the pain that you're in.
Dr. Harpham:
that's a very big lesson. It's hard to say anything after it, because it's such a big lesson. Gene, what do you think you were able to do to help your caregivers deal with your pain? I mean this idea that Annette brings up that it's almost harder for the person watching the loved one have pain than actually to have the pain.
Gene:
You know, I'm really not certain, because, unlike Annette and perhaps Bill, my pain was never really to the point where I was what I would call unable to do my usual things. And so I was always kind of, I was lucky enough that I was able to continue, and am now. And of course I base this as Bill might, and maybe Annette does, the fact that I'll have this for the rest of my life, unless some major medical breakthrough occurs. So I guess what I've tried to do is by getting involved in other things, try to make my life as normal as possible, and if I can't do something, obviously I say I'm sorry, I don't think I could do that.
Dr. Harpham:
Have your caregivers ever said to you what they need, for them to deal with your pain?
Gene:
Well, no, they're constantly asking me, they're constantly offering their help. I, too, have a wonderful family, and they're constant and my wife and my three daughters and my grandchildren are always asking me whether there's something they can do. But the reality of it is that when you have extreme pain but you're not disabled really from doing most things on your own, there's not much you can say, other than I appreciate your caring, it means a lot to me, and kind of go on with your business.
Dr. Harpham:
Gene, do you ever wish they wouldn't ask?
Gene:
No, I honestly think by asking it's showing you care. (Annette says she agrees).
Dr. Harpham:
What about you, Bill? Do you ever wish people wouldn't ask how you're doing?
Bill:
In my particular case there are times when I wish they wouldn't because I do a lot of volunteer work and a lot of church work. And there are people that I don't see on a regular basis, and when you see them, they want to know how you're doing, and you have to go through this song and dance with everybody. You know. So there are times when I see a certain person coming that I know that is long winded, I just wave, you know?
Gene:
I have this same problem and I've got another technique for you to try, and
what I do is, as I walk up I can see the words forming on their lips, how are
you doing? And , or you look very well. And that's the other killer phrase,
You look so good. So what I do is before they ever get it out, I put my hand
on their arm and I say to them, I take the offensive, I say, You look so good!
And they look at me, and first of all "Gosh does he know something I don't know,
is there something wrong with me?" And finally you see the light go on, "he
doesn't really want me to ask that, does he?" So I've cured a number of my longwinded
friends by doing that. Maybe it's nasty, but it works.
Bill:
That's great!
Dr. Harpham:
We've talked a little bit about how to deal with pain when you're having it, a big topic that came up was using distraction. I'd like for the three of you to summarize for me some of the other techniques or tactics you've used to deal with pain. One was talking with your doctors, trial and error as different cancer treatments, going to a pain center, are there any other things that the three of you have done to try to help the pain?
Annette:
With me I actually wrote down some things that I thought were really important
that I wanted to share. Definitely after having fifteen bone marrow biopsies
and aspirations, my last three were a lot easier for me because I wasn't so
tense, and it was because I learned relaxation techniques. And like I said,
I distracted myself by the roller coaster, I went into and saw a therapist who
helped me with like hypnotherapy, and she was able to do a tape for me where
I was riding Montoo during my bone marrow biopsy. So that was one thing that
helped me. So it's gotta be whatever anybody, and then you like. You have to
make your body like cotton when the needles are going in. And whatever way that
you like that can distract you; you can make a tape, you can listen to music,
those kinds of things can help you through those procedures. After having a
child, I wish I had learned this when I was going through chemo. But deep breathing
exercises, like you go through with Lamaze, can definitely help you with pain,
and then the other thing to me is, when you are given a medication for pain,
taking it the way it's prescribed. Because if you wait until you feel the pain,
you've gone too long. If you take it as prescribed, you will stay not in pain
as bad as you could be. And then last is just accepting the kindness of others
and letting them help you with your chores and things.
Bill:
Well, that's great, Annette, because you know that was one of my problems and I got this prescription bottle that says, "take as needed" for pain. It's on the bottle. I think mm hmm, that's pretty good. So what I would really do, if I felt the intensity of the pain arising, I would just go, you know, just take it and watch the clock, to see how many hours had passed by, something like that. But one of the things that helped me to distract my pain is that I do volunteer work in the streets and I deal with addicts, HIV people, and broken human beings. And there's a lot of times I've come in, I literally forget my pain. When you look into the face of a 25-year-old drug addict that has lost all his hopes, all his dreams, and possibly facing prison time, you say, Wow, man, this guy really screwed up. And in that respect you kind of forget about them and you sit down and relax for a moment and you start to get up and Woops! There it is!
But another thing I wanted, I love music, and my wife had gotten a machine as a gift that had these variations of waterfalls or running streams, thunder and lightning, stuff like that. And I found that if I put out the lights, got a little quality time by myself, put that thing on for about fifteen minutes, oh, man, that is soothing. And plus my daughter gives excellent massages! Oh, Oh, wow, man! You're laying there like, give me a few more minutes, just a few more minutes. And I mean, oh, she is great man. Sometimes she gets this oil and I'm just lying there, oh wow, I'm just eating it up, you know. So like Annette and Gene has said, distraction is great. We got to have it. Because pain would drive you to the limit, sometimes.
So the thing about pain to me is that it taught me a lesson that I'm not superman, I am vulnerable, you know, so I must allow myself to go through whatever I need to go through to get relief or release from the pain, and being an African American man in the deep south, with this image I had to uphold, I'm learning that there are people that if you be honest with them will say, "hey man, I'm sure glad you told me that, because I had this little problem myself.", and all of a sudden you get this fraternity of people that say, oh, man, I'm sure glad you told me.
And so it has really blessed me, because when I do presentations in churches, it gets so quiet, and then afterward people just lean around over the coffee pot and they want to talk to me individually, because they think they have a very unique situation, and probably it is. But it stretches a great family a grade and there are times my wife "Look, get out of the house, go see a real funny movie, laugh, you know. And she told me you know, when you laugh real heartily, it massages your internal organs, I don't know where she got it from. She said, "baby, you need to laugh." So okay, let's laugh, let's have some fun. I said, look at your last grandchild, that's funny right there. So you know, all of the distractions that Gene and Annette mention are all great, and it keeps us up so when other people look at us they will see that even though we are hurting, we're still in the race. We're still in the fight, and we're gonna do our best to make a good accounting for ourselves.
Gene:
Well, this is Gene in the urban jungles of the State of Washington, where we don't have any of the kind of problems that Bill was describing. I think the last thing I would like to add that we haven't said, and that is it often helps me because we all know of people, as bad as we feel, usually we all know some people who feel worse, for some reason, and I think it helps, it helps me at least, to keep in perspective that I know that there are other people out there who are in much worse condition than I am, that maybe I shouldn't feel so sorry for myself and maybe I should just go on with my business as I can.
Annette:
Can I interject something that I forgot to say that I feel is really important?
I think another thing that helps me that is really good is prayer and meditation.
(bill says yes) and being able to pray and believe that God was there for me
and that my life had the meaning and I was learning this lesson. And I think
that prayer definitely helps me through it, too. And that was, I mean, sometimes,
that was the biggest distraction I had during procedures, was just praying to
god to please help me right now, because this is very hard. And I would cry
into the pillow as I was having my bone marrow biopsy, and just say, God, help
me, because that was when I needed to be distracted the most.
Bill:
Annette, that's great, too, because prayer has been a big part of our lives, all of our lives. And going through this pain and the different medication and different procedures, sitting there waiting for your turn to be called, and all of this, your mind plays tricks with you, and stuff. And my faith in God has really blessed me because one of the things, another thing that has helped me that lastly, is that I read stats quite a bit and my wife tells me I read the obituaries cause I'm looking for extra work on the weekends, you know, that's not really the case, you know. (all laugh) I started reading obituaries because a lot of times they list the cause of death, and I've noticed in our area, oh, wow, almost on a daily basis there are many, many individuals that have left this world because of different type cancers. And I've lost a friend, as a matter of fact, I've lost several friends since
I was diagnosed, and people walk up to me and say, man, you've got a purpose, you're still here, and they're gone. So it makes you feel like you got some worthwhile things you got to accomplish.
Dr. Harpham:
And you've used your pain as a force to help you connect with other people. Well, I think what we've seen is that pain is something that can affect all spheres of our lives, even though it's the patient who has the pain, it affects the entire family, it affects friends and all those who care about the patient. I think we've also seen that dealing with pain occurs on many levels, communication with the doctors, communication with the families, learning about proper medications and treatment, using non medical approaches to pain, relaxation, meditation, prayer, altering activities, learning about pain, talking about pain and dealing with pain, can help make it better. I hope your discussion has helped to sort through some of the issues related to pain, that may be part of your life. A big thanks to our guests, Bill, Annette, and Gene, for their willingness to share their thoughts and feelings and a part of their lives with us today. I hope that some of their experiences and insights 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 website or by telephone. For the American Cancer Society's Cancer Survivors Network, I'm Dr. Wendy Harpham, wishing each of you a great day, today and every day.
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(5 minutes 26 seconds)
