Head and Neck Cancer

Steve A.	Bob	Steve S.

Welcome and Participant Introductions: Dick Foley, Steve A., Bob, Steve S.

Dick:
Hello and welcome to the American Cancer Society's Cancer Survivors Network. I'm your host, Dick Foley. Today I'll be talking with three people from across the country, all survivors of head and neck cancers. As a cancer survivor myself, I certainly understand the importance of talking about cancer issues openly and also talking about what all of us can do personally and publicly to help each other. I'd like to briefly introduce our guests and then we'll open up the discussion as we talk about issues today such as: dealing with anger, and then the fear of cancer recurrence; the difficulty of losing the support from your family and friends, the personal power of prayer and faith, adapting to physical changes in eating and speaking, and respecting each and every day.

Our first guest is Steve A, from New Jersey. We call him Steve A because we have two Steves with us today. This Steve is a 47-year-old gentleman, married, and has a grown daughter who is nineteen. In April of 1999, during an oral exam, his dentist first noticed a spot on his tongue that was confirmed to be cancer of the tongue. He was treated with chemotherapy and surgery and over time, he has worked to coordinate the muscles of his tongue to regain flexibility as he deals with eating and with talking. Steve, thanks for being with us today.

Steve A.:
Well, it's a pleasure to be here.

Dick:
Our next guest is Bob, from Louisiana. Bob is a 60-year-old survivor of cancer on his voice box or larynx. In 1998, he was having difficulty speaking and was very uncomfortable, so he went to the VA, where several doctors examined him. He was referred to an ear, nose and throat specialist, who diagnosed the tumor on his voice box. He had surgery followed by thirty radiation treatments, and his teeth were removed. He now speaks with the aid of a prosthesis. Bob is single, is divorced, and has a grown daughter, and he moved near her after his cancer. Hi, Bob, and glad to have you here as well.

Bob:
I'm glad to be here. If I can help anybody, I certainly will.

Dick:
Well, we appreciate that. Our third guest today is from Georgia, and we'll call him Steve S., our other Steve today. In 1999, he was having a sinus problem, and went to a doctor who put him on a prescription medication but that really didn't work. He also saw an ear, nose and throat physician but still did not get an accurate diagnosis. Finally, the third doctor, also a specialist, diagnosed the throat and neck cancer. He was treated with radiation and chemotherapy and then surgery on his neck. Steve is married and has two grown children. How are you, Steve?

Steve S.:
Very good, thank you.

Finding out you have cancer

Dick:
Nice to have all you gentlemen with us today. And Steve A, our Steve from New Jersey, let's begin with you if we may. And with the story of your diagnosis, tell us, in your dentist's words, if you can remember, what he noticed and what he told you he saw.

Steve A.:
Well, he was doing a sort of standard check where he holds your tongue with a piece of gauze and looks at it and he noticed a whitish spot on the side of it, and actually the dentist was a new graduate. I go to a practice where there's a grandfather, who's now retired, and the father, who's the head dentist, and his son, who's just out of dental school. So he was in his first year of practice and maybe not too sure about this being something. And we went around a bit on wondering what it might be, I'd just had some dental work done and we thought maybe it was rubbing against my tongue, and made some adjustments and it didn't really get any better. So eventually they sent me off for a consultation with an oral surgeon, who did a biopsy.

Dick:
So you'd been aware of this spot on the tongue. Was it causing you discomfort?

Steve A.:
No, not at all. And in fact one of the things that is surprising to me is that once I got the diagnosis that it was cancer, I could look at it and see very clearly that it was a lump. But before that, it's just a white spot to me. I had no perception of its actually bulging and it's amazing how the change of perception, knowing what it was you suddenly saw "oh, that's a lump under there".

Dick:
And I'm assuming that you had no reason to be fearful or on guard against cancer of the mouth?

Steve A.:
No, and in fact, I don't have any of the risk factors. I never smoked, never drank more than moderately, and I think there's a risk factor in being a light skinned male over 45, but none of the standard things. No high-alcohol mouthwash or anything like that. So it was quite a surprise.

Dick:
So it was the biopsy, then, Steve, that gave you finally the clear diagnosis. Can you remember what went through your mind when you heard that it was, indeed, cancer?

Steve A.:
Well, I'd seen this doctor and he left a message on my voice mail at work, not of course telling me the diagnosis, but saying that I should call him. And in fact, he did not identify himself as a doctor, he just said who he was and could I call him. And I didn't recognize the name right away, I'd only met this doctor the once the week before, and for an hour or two. I thought it was some salesman wanting me to call, and then I finally called him and his receptionist says, "Oh, yes, he wants to talk to you. Hold on." And I waited there for several minutes. And I was preparing to make a joke to him, something a long the lines of, "Gosh, it's not a good idea leaving a guy waiting like that, because he might get the idea that he has cancer." (Dick says, "Oh, my!") And in fact he came on and told me I did have cancer. So... obviously it was not a great moment. In fact it was a big surprise because even though the word "cancer" had been mentioned, at some point previously, I really did not expect that that's what it would be. I thought it would be some other benign something on my tongue.

Dick:
Sure. Were you alone at the time, Steve, when you heard the news?

Steve A.:
When I heard it, yes, but I work at home and my wife was in the house so I went down to tell her right away after I got off the phone. And the oral surgeon invited me to come over to his office, late in the afternoon, it was almost time for him to close up for the day. He said to come over and we can talk after I close down the office.

Focusing on your survival

Dick:
How were those first few hours, Steve? What were you feeling?

Steve A.:
Well, I didn't sleep at all that night. I was, well, I mean, shocked, of course. When I saw him my first questions to him were, "Am I gonna live?" and "Am I gonna lose my tongue?" And unfortunately, he said, "I don't know the answer to those questions. I'm not a specialist". You know, I had to wait until I could see some other doctors in the next several days to get better answers.

Dick:
Steve, was fear a part of what you were experiencing?

Steve A.:
You know, at the initial part there, you know, it's so overwhelming that it's hard to put a name on it. It's nothing quite so focused as fear. You just... I'm the sort of person who sort of accepts problems and tries to figure out how to go on and deal with them, at the same time, so you go from sort of your normal life to thinking, okay, what I have to do here is survive. But, it's really not until months later that you get perspective on all of this. Initially you're in this fog and the terror you don't know how bad it's gonna be and you need information but you can't get it right away, and that sort of thing.

Dick:
Why don't we go then to the next step in your sort of diagnostic process, and then we'll bring our other guests into our discussion here, Steve. But when did you see the specialist who was able to answer the questions that obviously come to anybody's mind who is newly diagnosed?

Steve A.:
Well, the next morning I was able to get in and see my normal doctor, who looked at this and said, What you need is a really good head and neck surgeon, and you're in luck, I know good one. So he gave me a referral there and I was able to get an appointment in a couple of days. Before that I was able to go and see another head and neck surgeon that the oral surgeon had recommended. I actually decided not to go with him, and so within I guess three days of the diagnosis, I had seen two cancer surgeons who gave me similar recommendations in terms of treatment and similar percentage survival rates, somewhere between 70% and 90%. And at that point I started to feel at least I was beginning to know what was going on.

Dick:
So, along with answering your questions, they were able to give you some reassurance.

Steve A.:
Yes. Of course, they hedge these things because individuals are different.

Dealing with the fear

Dick:
Bob, let's turn to you. And you had some very definite symptoms prior to your diagnosis. Can you describe what you were experiencing?

Bob:
Well yeah. It was kind of like when I was like an adolescent and my voice was changing. My voice took a definite change. And well, just a few weeks before it really got bad, a friend of mine, his voice changed, and he switched brands of cigarettes, and his voice went back to normal. So that's what I did. I switched brands of cigarettes. Well, needless to say, it persisted. And I saw two or three doctors at the Veteran's Administration in Houston and I finally got one who referred me to an ENT doctor. And there was no question in their mind. I wanted to get a second opinion and went back the following week and they had a doctor from Baylor University in there. And they put a little tube down my throat, and he said, "Oh, yeah. That's got to come out." And so I was afraid. I've never been so scared in my life. The most fearful time, I think, was when they woke me up at five o'clock in the morning and told me to get on the stretcher, buck naked, and just surrender myself. That was really very, very hard.

Dick:
Now, when you had an opportunity to discuss your case, Bob, with these physicians, did they, as Steve has described in his case, did they talk about rates of survival and how they would treat it? What did they tell you?

Bob:
Actually, she did tell me. She said, "You've got an 80% chance of it being completely gone and not recurring, and a 20% chance of it coming back on you." That was pretty good news, really. Bless her heart, I tell you, I've heard some bad talk about the VA. Don't believe a word of it. Those people are great.

Dick:
So you've got good things to say about the care you got there?

Bob:
I sure do. They saved my life.

Dick:
Tell us about the fear that you describe, you say it was maybe the most terrifying moment of your life? How did you deal with that?

Bob:
Well, I just tried to buckle under. You know, I was in the military and it was just something I told myself I had to do. Scared as I was, I knew I had to do it. And I was alone. I didn't have family with me.

Dick:
Yeah, that was my next question, if you had anybody to turn to for help or support?

Bob:
No, and I think that's probably the worst part. I didn't have any support from anybody.

Dick:
Tell us then, about how your cancer was treated. What did you have to go through?

Bob:
Well. Physically I was in pretty bad shape. I'd been drinking quite a bit in them days, and the cancer had eaten away at me and I was just down to skin and bones. I weigh 165 right now, but I was down to 114 pounds. So I've gained over fifty pounds since my operation, and well, it's like Steve from New Jersey said, it became overwhelming. But I don't think it was overwhelming to me until after it was all over, and I realized, what I am, what's happened and it was overwhelming.

Coping with the initial denial

Dick:
Well, you have traveled a very long road, obviously, in your recovery. Well, I want to come back to Bob, and talk to you about lifestyle changes, because I suspect maybe you have made some and have some comments on that. But, let's bring Steve S. now into our discussion. This is our Steve from Georgia. And your diagnosis, Steve, didn't come easily or quickly. At first, what were your symptoms, and what did you think was wrong?

Steve S.:
Well, it started, believe it or not, I just was recuperating from back surgery. I had two crushed discs taken care of and I was just getting back on my feet, and I thought my sinus was bothering me because the phlegm and everything was stuck in your throat, and you always want to swallow or try to make it go down. So I went to the doctor and she tried, we went through three different types of medications, and no, this one's not doing it, this one's not doing it, not even the slightest, you know. So she said maybe you should go to an eye ear nose throat doctor. So she set up an appointment and I went to see him, he looked at it and he says, well, if I was you I would go and see this doctor and have it done fast, because I think you may have cancer.

Dick:
Now, when he said have it done, did he mean...

Steve S.:
Make an appointment to see this doctor, to get it confirmed.

Dick:
Oh I see, for a biopsy of some kind?

Steve S.:
Right. So I said okay.

Dick:
How quickly did you do that?

Steve S.:
Next day I called up and made an appointment. I had a letter I told the nurse from my other doctor here and highly recommended this surgeon doctor to come and take a look at it and see what he thought, so he fitted me in about three or four days later. But through all this time, though, like four months had passed from the original doctor. So I went and seen him. He took that test tube or whatever you call it and put it down your throat and everything, and he seen something on the tonsil and at just about that time when I was making the appointment, a bulge in my neck started like growing. So he said we're gonna have to take a biopsy but I'm not gonna pull no bones, I'm 99% sure it's gonna be cancer. We'll call you Thursday and let you know the results, I'll call you about seven o'clock at night. I says okay.

Dick:
So what's going through you mind now, Steve? What are you thinking about?

Steve S.:
Actually, up until he called, I really didn't, I had blocked it out. I was still thinking, well, it's just the weather, or I didn't get the right medicine for my sinus. I was trying to maybe fool myself into believing it, but I really, it didn't hit me at that time yet.

Dick:
Well, none of us wants to know we have cancer. So I think that that little word called "denial" creeps right in there.

Steve S.:
Very true. (Bob says "exactly right")

Dick:
And it's very powerful.

Steve S.:
Oh yeah. And then like he said, seven o'clock Thursday night, he called and that's when he gave me the news.

Dick:
So when you got that diagnosis, what did he go on to tell you about how your cancer would be treated and how these treatments might impact your life?

Steve S.:
Well, like I say, he's a very blunt doctor. He's a specialist in his field, so he didn't pull no punches. He said I got a team of doctors I work with--a radiologist doctor for the radiation treatments, and the chemo doctor. They all work together, they reviewed my biopsy and everything like that and they already had their plans before they called me. They already knew what they were gonna do. So then he explained it to me, that I'd be needing the seven weeks of radiation and of course the six weeks of chemotherapy.

Dick:
Now are these treatments following a surgery?

Steve S.:
No no. He didn't want to do surgery first. He said he felt it was a more positive thing to go through radiation and the chemo, because he said you were gonna have to think of two things. You may never talk again, or you may never eat again, or you might not do both. You might have to use a feeding tube for the rest of your life. (Bob says "Oh, man!") He says, those are your options.

Your relationship with your physicians

Dick:
Steve, you have described this doctor, I should say you describe his manner as blunt.

Steve S.:
No, he's a very good doctor. But like I say, he doesn't try to pull any punches, and he doesn't hide things. He tells it, he's very nice, but he tells you like it is, I mean he doesn't try to disguise anything, he doesn't want to try to give you high hopes if there's no high hopes, but all this time he's assuring me, he says, "We are gonna cure you."

Dick:
Okay. So actually you appreciated his manner of communication.

Steve S.:
I was. Because I wanted to be told everything. And every time I went to his office, I took a tape recorder and he allowed me to tape our whole entire conversation, so this way I could go home and you know a lot of times you're at an office and you're dealing with cancer, you can't really understand, and you're blanking out everything that you're being told. You can't remember a half hour later. So I...

Steve A.:
Can I jump in here for a second? I just wanted to comment that is a little different than that. The surgeon I went to was I think a wonderful surgeon, he's highly recommended, and when I was in the hospital, the nurses were saying, "oh, he's the best," you know, but he very much had a surgeon's personality. And although I think you know he was fine, he was friendly, he answered questions, he did have the attitude that basically, if you have more information, it's more for you to worry about. And so he didn't volunteer anything, and for me at least, I felt this was the wrong thing. I don't know, I didn't get a chance to do it twice two different ways, but you know there were a lot of things that came up later, that when I asked him about it, he'd say, "Oh, yeah, that's perfectly normal." And my reaction was...

Steve S.:
Yeah, that's with me, he's laid everything out right there on the table. He was, the one doctor that when I went in to see him each time, my wife and I would like write down some questions and everything, and I didn't have to ask them, he had answered my questions prior to even asking the question.

Dick:
Well, when you think about it, guys, that's a dilemma for physicians, and I know oncologists and cancer surgeons, you know, have differing philosophies about how much do you tell a patient? How much does a patient want or need to know? And then of course I think as patients, we differ, too. Some of us really want it laid out, like it was for you, Steve S.

Steve S.:
Well, see, when I went to see him originally and everything, I told him, I says, you know I don't want no hanky pank stories or you tell my wife something behind my back, you know, I want to know what's going up front. And he says, very well.

How did you react to the prognosis?

Dick:
Okay. But let me ask you this. When this doctor, Steve S., told you that you might never speak again, and you might never eat normally again, how do you deal with that kind of possibility?

Steve S.:
It's very frightening. At first you think, well, ah, if I have to go with a tube, well, no big deal, you know, you're living. The talking part had me really scared. What am I gonna do if I can't talk you know? Try to learn sign language or something. It's very frightening.

Dick:
Well, Bob, was that a concern for you? That you might never have the ability to speak?

Bob:
Yes it was. They told me point blank that, uh, that's one of the things I was so scared of. I asked them, "How do you know it's malignant?" And she says, well, what we're gonna do is, when we operate we'll take a biopsy right then and there. And so you know I was on that operating table, I was wondering about, am I gonna be able to keep my voice? Because they really don't know for sure it's malignant.

Dick:
And your surgery was what they call laryngectomy?

Bob:
Right.

Dick:
And did that leave you, at least for a time, without the ability to speak?

Bob:
About eight months.

Dick:
Eight months. What was that like?

Bob:
It was awful. I stayed mad. A state of anxiety. And it was awful.

Dick:
How did you communicate when you had to?

Bob:
To write.

Dick:
Wrote notes to people.

Bob:
Right.

Dick:
Boy, that has to be terribly frustrating.

Bob:
Oh, it is. Believe me, it is. I've never been known for a short temper, but I went through a period there that, oh God, it was awful.

Dick:
The anger that you felt. Let me ask our two Steves if that was a component of their emotions as well. Steve A, did you feel angry at a particular time?

Steve A.:
Oh, absolutely. I mean I say that's a very big one. You know, you were asking before how you deal with this. And I think that I focused on, you know, what's the immediate problem? The first thing is, you want to live, and the second thing is, you want to get through this particular hospital stay. I remember my second hospital stay, which was the surgery, you know, they biopsied some lymph nodes and it would take a few days for them to get the results on those, and I remember thinking to myself that if those biopsies come back positive, and they are cancerous, then it's a whole other road and more difficulty and so forth. And then telling myself, well, don't think about that right now, just concentrate on what you're doing today and tomorrow and when that comes in, it comes in.

And at some point you sort of, you know, you don't have an immediate next thing to worry about. And you can acknowledge some of the anger more, and I remember when I was in the hospital after surgery, maybe two days after surgery, I went into the little bathroom in the hospital room and I looked in the mirror and looked at my tongue, and I almost cried, it was just so, you know. It doesn't look so terrible now, it's healed up a lot, and of course I'm used to it, but you know, but at the time, I just felt like, the most screwed guy in the world, you know. You know, I never did anything to deserve this.

Dick:
Why me?

Getting past the anger

Steve A.:
Exactly. And actually when I think about talking to other people with cancer and things like that, I think there should have been a social worker or something there that could have helped me with it. It's not something that happened immediately, but the other thing was that when I was in the hospital, for about a week, my wife was there, she was very supportive, but I really didn't want visitors. And part of that was the anger. I was really wrapped up in feeling mad about this and having people come and visit you, there's sort of an obligation that you have to, if not be cheerful, at least try to say, "Oh, I'm okay, I'm fine." And I didn't want to say that all! All I wanted to say was, "this is really terrible".

Dick:
You needed some time.

Steve A.:
And you know, some people like my father and my sister were actually really hurt because you know, I'd helped them with things when they were in the hospital or whatever and they wanted to pay me back, and you know, they were mad because I deprived them of the right to come to the hospital and comfort me. But I didn't want that. My father actually snuck in at one point and I sort of glowered at him, because you know, "You were told not to come, I didn't want to see you!" you know. I don't want to have to control my emotions and act the right way to make you think that I'm doing fine here.

Dick:
Very well spoken. Did you ever have an opportunity then to make them understand, or help them understand the feelings you were going through at that time?

Steve A.:
I did get to talk to, I mean I think my father got over it. And of course he's the one that did sneak in. My sister never did, and she was actually mad at me weeks later, you know, feeling that somehow I turned away from her, that I was supposed to lean on her and I didn't. And of course that's not what I was saying, and we did talk about it, and we got it straightened out. But you know even in that conversation, I was saying, "Hey, I didn't do anything wrong here. I was the one who was in the hospital. Why are you mad at me?" but you know. People, when peoples' loved ones are sick, they naturally worry about them, they, I mean they think, I think part of the motivation was they wanted to come to the hospital to see how bad I looked. You know, I mean, they didn't want me to be bad, they wanted to be reassured that I didn't look too bad. And in fact, when my wife was telling them, at my request, not to come and see me, and think they partly interpreted that as , "Oh, he must really be awful." "He must really look terrible." And sort of wanted to go see that to be reassured that I didn't look that terrible.

Dick:
You really have helped us to understand the emotions, though, because it's a roller coaster for awhile. (Steve A. says, "Oh yeah.") Steve S, were you angry?

Steve S.:
Yeah. I had the same, a lot of reaction that Steve A had, you figure, Why me? Why am I picked for doing this? You know. It can't be. I don't deserve it. It can't be. You know. I used to just walk up and down by the beach and just stare at the ocean and try to figure out, "Why me? Why do I have to go through all of this?" And it does play some mind games on you.

Dick:
So how do you get past that? How do you deal with that and move on?

Steve S.:
Well, three things that got me through it: my wife, my daughter, and my religion. Without those three, I don't think I could have made it. It's like I did wind up having the feeding tube put in because the radiation treatment, they had just destroyed all my saliva glands, and I wasn't even eating. And even... drinking. So in the course of a month, I dropped about fifty pounds. And they says, sorry, we're gonna have to put a feeding tube in you. So I had that in, but I don't have it no more. That was taken out, you know. But, uh. Like I say dealing with the feeding tube, then, you still say, well, "Why me?" like I was with my wife a lot and I felt like Steve A. a lot, I didn't want no company and anything like that. And at least I was respected like that, no one tried to force themselves to come and see me, and I tried to keep my own, you know.

Dick:
Tell us about your spiritual side, you say that your religion played a part for you. How were you helped by prayer?

Steve S.:
Well, it was a combination of things that really did it. Like I say, praying gave me the solitude and everything, but one of the big parts, believe it or not, what while I was going through radiation, like I said, the radiation on my neck had not only did it take care of my saliva glands inside, but it also took off all my neck skin. I mean, it was nothing but raw flesh. And they gave me this cream and everything to put on it, but the trouble was when you put it on it was fantastic, it didn't hurt no more or anything, but you had to take it off twice a day to reapply it. And taking it off, that was like murder! I mean, I was crying, it was hurting so bad. And they were trying to give me all different saline solutions, hot water, cold water, even my wife would cry when she was trying to take that salve off and everything. And one day, she just went ahead and she had a gallon jug of holy water we got from the church, she put that into a basin, took the sterile bandages, soaked them in the holy water, put them on my neck like we did with all the other stuff and like peeled it off, after wait a couple of minutes, and that cream would just blow right off. Didn't hurt or nothing. So I was using that then for the last three or three and a half weeks of the treatment, and it worked every single time.

The power of the faith

Dick:
You had another story, too, about the chemo making you sick, and you said a prayer about it.

Steve S.:
Well, that one night, even though I had the pills up that helped you with being sick and all and I was in my room and just had a big treatment of radiation and the chemo the same day, like a half hour apart, and I got in bed and just started feeling sickness coming on so bad, and I just went, "Lord, please. I can't go through another night of being sick. Not tonight. Please help me." And all of a sudden a warm feeling came over me. I felt totally relaxed, never got sick again for the rest of my treatment.

Dick:
Never once again.

Steve S.:
Never once, again.

Dick (and Bob):
That is amazing.

Dick:
Bob, the fact that we have heard from you again. Let me ask you now, you told us that you had to gain a lot of weight back and obviously now you speak with the aid of a mechanical device. Besides that, what are the challenges for you at this stage?

Bob:
At this stage, it's just one day at a time. You know, they told me that I wouldn't have my voice anymore. I thought that's all there was to it. But it's not the case. It's like Steve from Georgia just said, no saliva glands. It makes it real difficult to eat certain foods, like biscuits. They pulled out all my teeth. I didn't know they were gonna do that.

Dick:
That was a necessary part of the treatment?

Bob:
Yes. And I went in and in a hour or an hour and a half later, I came out less 24 teeth. They pulled 24 teeth. My teeth weren't bad. And okay, so I lose my taste. Not only that, I lost my ability to smell. I breathe through my throat. And therefore if you can't pull the sense across your olfactory glands, you can't smell. So I can't smell anything. And talk about being overwhelming, I don't really think it hit me that hard until, I was going to a speech therapist, and when she was trying to explain to me, you know, help me with that little electronic whatcha callit, you hold it up to your neck, and I never did get decent with that. I couldn't do it. And I was in her office one day and we were going over some words, and it just hit me like a ton of bricks. I broke down and I cried like a baby. She was very understanding, bless her heart. I don't think I'm the first one that did that.

Lifestyle changes

Dick:
Yeah. So, describe to us the way in which you're able to speak today. How do you do it?

Bob:
It's, I went in for another little operation, to uh, they put a hole in I don't know what you call that thing, it's what you swallow, your food goes down that side. And they punched a hole in it and put me a little valve in there, and I have to hold my thumb up to my throat to speak, but what it does, it forces the air out of the lungs through that little check valve, and it only passes one way. And what you hear is my voice, is the esophagus rattling. I like it a lot better than that electronic thing.

Dick:
So, what did your doctors tell you about lifestyle? Did they say no more cigarettes, no more booze?

Bob:
I asked them outright, I asked the doctor that did the surgery, I said, "Doc, what caused it? Was it my smoking? Was it my drinking? Or was it my highly seasoned foods?" She said, "Yes."

Dick:
All of the above.

Bob:
Right.

Dick:
So what have you changed?

Bob:
Well, I don't smoke anymore, I still eat my seasoned foods, as long as they don't burn my tongue, and I drink, in moderation.

Dick:
Well, good for you for leaving the tobacco habit behind.

Bob:
Yeah. That wasn't easy.

Dick:
I know it isn't. I've talked to a number of people who've struggled with that, so congratulations for doing that.

Bob:
Well, you see, I can't inhale it. My body was crying out for it, so I was smoking and smoking and smoking, and I wasn't getting any satisfaction because it wasn't in my bloodstream. So that's another twist to the whole thing. So it took me, well, really, three years before I got over the urge.

Dick:
But you made it.

Bob:
Yeah. Thank God.

Dick:
Steve A. - do you worry about a recurrence of cancer?

Steve A.:
Oh sure. I remember a few months ago I was at a meeting of a cancer support group, and someone had just come in with a new diagnosis, said to the group, "How long do you go between times when you think about cancer?" And somebody said, "Two hours." And you know, I was trying to convince myself that I could say 24 hours, but honestly, a few hours. But the difference is that the first few months after I had the surgery, I thought that and I was terrified. And of course, with surgery you get a lot of lumps that are scar tissue, and yeah, you find a lump and it's hard and you're terrified and you go the doctor and he says, well, you know, it's probably scar tissue but we don't know. We'll keep an eye on it. Of course that's not what you want to hear. You want him to say, yeah, that's absolutely the least likely recurrence that I've ever felt in my life! But you know, I think about it and in fact, there's a lymph node that's gotten bigger and my doctor's keeping an eye on, even though he doesn't really think that it's a problem, but you know, you always worry. I'm almost two and a half years out now, so my odds are pretty good.

Dick:
What's the interval now between thinking thoughts about cancer?

Steve A.:
Oh, it's still a matter of hours. But again, when I think about it, I'm not terrified. When I first... you know the first few months after the surgery, I had a lot of sort of physical issues. I mean, I speak pretty normally now, except when I'm tired, but my speech was not as clear, I had trouble with certain things, especially "s'es" at first, and I had real difficulty with eating. For weeks there I was dreaming of being able to eat a sandwich, because big things like that, I just couldn't work them around in my mouth with my tongue. And you know, those things gradually got better. In fact, probably one of the most interesting things, that you wouldn't expect, is your healing from surgery goes on for a long time. I was getting additional flexibility in my tongue a year after the surgery. And it never gets quite back to normal, but it gets back to a point where it's okay, you know, you're glad to be alive and it's you, and for me at least, there's not much about me right now that feels like a handicap. Yes, my neck is kind of tight, because of some of the things that were removed there, and yes, I have to brush after every meal because I can't clean my teeth off with my tongue, and little things like that, but as these things go, I can't really complain.

Bob:
At least you've got your teeth.

Steve A.:
Exactly. And I can speak. Which is one of the biggest blessings.

Dick:
So what did they do for you Bob and the teeth that were removed?

Bob:
I've got false teeth now. But allowing the fact that my taste buds were destroyed by the radiation, these false teeth just made it that much worse.

Dick:
So, the answer to the question, "how has cancer changed you?" would have several answers, in your case.

Bob:
Oh, yeah.

Dick:
How has it changed you inside? How has it changed your mental attitude?

Bob:
Well, I don't know any answer to that. Just like a bulldog, make it day by day. And that's pretty much what I do.

Your thoughts for the newly diagnosed

Dick:
Let me come back to you, Steve A, just for a moment, if I may, because you mentioned you're two and a half years down the road now from your treatment. Put yourself in front of the newly diagnosed patient, and they're thinking of you as the expert, because you've been through it, here you're down the road from what they're about to experience. What do you tell them?

Steve A.:
Well, you know, there's a lot of terrible things that you have to go through, but the other end of it is not so bad, and it's hard for you to conceive of that when you're starting out. I mean, if I think of myself when I got this diagnosis, think that a few years later I'd be missing part of my tongue and things like that, I would have thought, "Oh, that's terrible." Now I think I'm lucky, because I'm alive. There were a lot of discomfort and problems and things like that, and you know emotional issues and anger and so forth, but it does get better, and this head and neck support group that I go to, there's fifteen people there, many of whom have Stage Three Stage Four cancers, and are now seemingly fine. A lot of people get cured, and the people in that group sit around and talk about how dry their mouths are because they had radiation, but they're all saying, "But I'm glad I'm here."

Bob:
You got that right.

Steve A.:
So you know, you can't be exactly who you were before, but it ends up being something you get used to and it's not that bad and you're happy that you're still here.

Dick:
And how about you, Steve from Georgia? What are your thoughts. If you had the chance to sort of comfort or advise a newly diagnosed cancer patient.

Steve S.:
Probably one of the most important things I would tell them is please make sure you understand what the doctor tells you, and follow what he tells you. Because he knows what's right for you, and like I said, if you, see I had no surprises. Everything like even I felt sorry for the teeth, my surgeon said when he took the biopsy, "I'd go make an appointment with your dentist because you gotta have all, you can't have no cavities, stuff like that, they all have to be filled." He told me that even before I was really diagnosed with it, yet. There again, he laid everything out on the table. And now, no matter how bad things may happen, like you say, the dry mouth, here again, the radiation treatments and all that destroyed all my saliva glands, and still to this day like, I always got to keep a bottle of water with me. Cause otherwise I get so dried up I wouldn't be able to talk. I go to the store, I bring a bottle of water with me, I cut the grass, I gotta keep the water with me, but it's something you learn to live with and if that's the only thing you have to worry about, that's no worry.

Leaning on your family and friends for support

Dick:
So, looking back over it, then, Steve S., would you do anything differently? I mean assuming obviously that you can't change the diagnosis, but getting through the experience, is there anything you would handle differently, now that you've learned from going through it?

Steve S.:
Probably to really accept more the help you get from your immediate family. Cause they play such a big part in it, you know, and I don't think you can get through it without them.

Steve A.:
I'd like to second that, too. I found one of the things that was really helpful for me was to be able to complain to my wife. And I'm not a complainer. It's really hard for me to complain. But she let me complain and sort of encouraged me to complain. And I really needed to. That was the only way to get it out. ("Right," says Steve S.) And I had to learn that it was okay to lean on her, and complain, and there was no way to pay her back.

Steve S.:
But they have no idea, really, what you're going through. Nobody, unless they really went through it, can really understand or know how you feel.

Dick:
Just the mere fact that they're there for you and willing to listen is a huge thing.

Steve S.:
Oh, one hundred percent, no question about that.

Bob:
Yeah, I'd have given the world, to have had my family to help me.

Dick:
Yeah, now you say you were completely alone, Bob. Did you have anybody you could turn to?

Bob:
My son came to see me about three times, I think. But I'd been living in Texas for ten years and all my friends were friends I'd made in Texas when I was normal. Now when I come out of the hospital and moved here, my daughter wanted me to come here to Louisiana, you talk about making new friends, because they didn't know me when I was normal. They say what kind of a damn freak is this guy? And I've been called some pretty ugly things by ignorant people.

Dick:
How did your daughter help you? Is she a nurse?

Bob:
Yes. She's a nurse.

Dick:
Was she helpful to you during your period of recovery?

Bob:
Well, I was over there in Houston and she was here in Louisiana, so, no I didn't really have any help. Everything, I mean, I got through it by myself, really.

Dick:
Let me wrap up, gentlemen, with the same question for all of you, and that is, I know from my own experience that there is a great deal of learning and growing that comes from every cancer experience. I know I'm not the same person I was before I went through cancer, and I suspect that's true for all of you. What have you guys learned about being a friend, particularly to someone who's going through a cancer experience? You want to start, Steve A.?

Steve A.:
Huh. Interesting question. Well, for sure, given my own experience, you don't want to force yourself on them, you have to make yourself available but sort of let them talk when they feel like talking, and what they feel like talking about. One of the things I found with support groups is that really the world is divided into people who've have had cancer and people who haven't. And it's like Steve S. said, if you haven't had it, you really can't understand it. You can kind of understand it, but you don't really get it. And I've been surprised and pleased that you run into somebody in some cancer group, and they're usually very willing to talk to you about their experiences, not even people who are further along in the process, but even people who are newly diagnosed, feel that it's easier to talk to someone who has also had cancer. Maybe we're all ashamed that we got cancer, or something, you know, you feel like, well, I can talk to this person because he's like me, he has cancer or he had cancer.

Steve S.:
Knows what you're going through.

Supporting others going through a similar experience

Dick:
Yeah. There's some kind of a bond. I quite agree. You know I've had strangers, because I worked in television here in Seattle, and I've had strangers come up to me, because I've been very open about my own cancer experience, and throw their arms around me and give me a hug! Because what I said to them, as openly as I did, meant so much. And all of a sudden this stranger just felt this very strong bond. It's been most surprising on a couple of occasions. Bob, have you had an opportunity to sort of reach out or to support somebody else going through a cancer experience?

Bob:
No. No, that's one reason I agreed to be on this show. I wish I could help somebody.

Dick:
Well, you know something, you're gonna have that opportunity. It WILL come your way, I can promise you. I know it's gonna happen. Steve S, how about you?

Steve S.:
Indirectly I did. We had, after I moved to Georgia and everything, some of our friends, their son was diagnosed with throat cancer, and I talked to them and said, if he needs to speak to anybody you know, I'd be more than happy to. But I more or less told them what they might be able to expect and things to go through, and they found it very helpful.

Dick:
Yeah, we can take a little bit of the mystery out, even from the position of a lay person. We're not physicians, but we've learned a heck of a lot about illness and dealing with it.

Steve S.:
Oh yeah. And like we say, if you've gone through it, the person is more apt to listen to you, because you can relate to them. You know what it's like.

Bob:
I have them walk up to me and say, You know my granddad had one of them things. And my dad had one of those things, or a good friend of mine had the same thing. They just walk up to you out of the blue, you know.

Dick:
Well, one of the great lessons you can teach to kids, Bob, is not to smoke.

Bob:
Exactly.

Dick:
And the message is never more profound than when it comes from someone like yourself who has suffered the consequences of long term tobacco use. You know, twenty years ago, guys, and I still remember this very clearly, I don't know that this kind of a discussion might even have been possible. There was so much reluctance 20 or 25 years ago to talk about cancer, and of course there are still cultures around the country where cancer is still kept very quiet and the patient isn't told anything. So, especially in light of those changes that are happening, I want to express my gratitude to all of you on behalf of the Cancer Survivors Network, because your willingness to sort of lay your souls bare a little bit and talk about your cancer experiences is really valuable, and I think it will touch others, in some cases very deeply. So we thank you all, very, very much.

Steve S.:
Thank you. It's good to have stuff like that because I was just down in matter of fact not too long ago, in Atlanta, where the American Cancer Society for their webpage, they made a new webpage up, and everything, and they had interviews and wanted us, they asked me all kind of questions on what type of information would be good to put on their web for people and everything. And having all that stuff available, that the person gets so easily now, is more comforting to them. So the more we can help, either through these talks like this, or through the web, through the American Cancer Society, I think that people are gonna benefit 100% more.

Bob:
Do you have their web address:

Steve S.:
It's was just, it's gotta be...

Dick:
Yeah, it's www.cancer.org. And there actually are some very helpful things. And actually you can drill down to the Cancer Survivors Network, too, starting at the American Cancer Society's website. It takes a couple of clicks, but you'll get there.

Steve S.:
Yeah, a lot of information from that website and it helps the people out. Cause let's face it, when you're told the news, I mean, besides being overwhelming, you can't think straight. You know, what do I do? You're totally numb. So here you have all this help at your fingertips, and a lot of it is in plain English.

Dick:
I'm glad you made that point, Steve. And we're reaching the end of our show, so to our listeners, I want to say that I hope this discussion today has helped many of you sort through some of the issues that now may be a part of your life, and once again, I'll repeat my sincere thanks to Steve A, and to Steve S, and to Bob, all three of these gentlemen, for their willingness to share their thoughts and feelings and a real big part of their lives with us today. I hope some of their experiences will help you think about and talk about your own concerns in a positive way. I encourage you to listen for other discussions that we have available on the website or by phone. And so, for the American Cancer Society's Cancer Survivors Network, I'm Dick Foley in Seattle, wishing each of you a great day, every day.

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