Lymphoma/Leukemia, Male Under 35, After Treatment

Tom	Robert	Dave

Welcome and Participant Introductions: Dick Foley, Tom, Robert, and Dave

Dick Foley:
Hello, and welcome to the American Cancer Society's Cancer Survivors Network. I'm your host, Dick Foley. Today I'm going to be talking with three men from across the country, all approximately 35 years old, or younger, who have completed their treatments for lymphoma or leukemia. As a cancer survivor myself, I understand the importance of talking about cancer issues openly, and also about talking about what we can all do personally and publicly, to help each other. I look forward to a great conversation with these gentlemen, so let's get started. I'll briefly introduce our three guests and then open up the discussion as we talk about issues such as: side effects and they come in many forms, physical, emotional and cognitive. Dealing with disabilities and work-related issues. Facing intimacy problems. Changing your lifestyle and stopping old habits, and finally, what you learned about yourself through your cancer experience, often a very profound area of discussion.

Joining us today from Texas is Tom, a 33 year old survivor of acute lymphacytic leukemia. Tom, by the way, is single, unmarried. In 1971, his family was traveling between states to a new duty station, when he developed high fever and listlessness and he was taken to the hospital, where the doctors were dismissive. But his assertive Mom took him to the Mayo Clinic, where he was correctly diagnosed. The military then medivaced him immediately to San Antonio for treatment. Only three years old at the time, he was treated with radiation to the head and spine and also with chemotherapy. Now, as a survivor, he has a host of long-term side effects that we'll be talking about today. Tom, thanks for being with us.

Tom:
Thank you very much.

Dick:
Next I'd like to introduce Robert. Robert lives in the state of Georgia with his wife, who is a breast cancer survivor. They also have two children. In November, 2000, while his wife was being treated for her cancer, he, Robert, wasn't feeling well himself, having congestion and head cold type symptoms that he couldn't shake. He finally went to the doctor who did x-rays and did some blood work, and the tests showed a mass in his chest and some blood abnormalities. A subsequent biopsy confirmed Stage I Non-Hodgkins lymphoma. Robert was treated with chemotherapy and radiation and he has been in remission since this past March. Robert, thank you very much for being with us today.

Robert:
No problem.

Dick:
Our third guest is Dave, who lives in Florida. Dave is single and a Hodgkins lymphoma survivor . One morning in 1990 he was putting on his shirt and brushed against a lump on his neck. But, it didn't hurt much, so he didn't think a whole lot about it. The lump hung around for awhile so he went to see his doctor, who suggested that he consult with a surgeon. The oncology surgeon recommended a surgical biopsy, and on the day of surgery, the surgeon noticed another lump growing behind it and he confirmed Hodgkins lymphoma to Dave while he was in the recovery room. He was referred to an oncologist for a second opinion and then was treated with many months of chemotherapy and oral medications. Hi, Dave, and thank you, also, for being with us.

Dave:
Thank you for having me.

How did you feel when you were told you had cancer?

Dick:
I want to turn back to you, Robert, if I may, only because your cancer experience is the most recent. Can you look back and remember how you felt on the day when that biopsy confirmed you had non-Hodgkins lymphoma?

Robert:
Basically I was very emotional strained when I was told. I'd been told by my surgeon, who looked at the x-rays and CT scans and everything and said he was 95% sure it was a benign growth, but when the radiologist came out with his two technicians and told me it wasn't benign growth, that sent a chill down my spine, basically.

Dick:
Had there been any cancer experience in your family? Anything that might have suggested that you could be experiencing cancer?

Robert:
After I talked it over with my mother, there is a certain gene that runs in her family and apparently I must have got it. My dad had stomach cancer in 75, he's been in remission for over 25 years now. My grandfather had some kind of a lymphomic growth in his neck in 62 or 63. They removed it but later found it around his prostate kidney area in the early 70's and he passed on in 74. And I had a lot of uncles who died of lung cancer, but they were out of World War II smoking the Lucky Strike non-filter cigarettes and all that stuff.

Dick:
Well, when we realize that cancer is touching about one in three American families, I guess it probably shouldn't come as too big a surprise to any of us, and yet it seems to do that and there's often a lot of denial, when we first are given that diagnosis. These moments when we hear that word from a physician, are probably those moments that those of us who are survivors of cancer will never forget. Dave, do you remember your reaction when you were told that you had a cancer?

Dave:
Yes, I do. To be quite honest with you, I wasn't surprised. When you introduced me you said the surgeon discovered the lump, the second lump growing in my neck? It was I that discovered it. When I felt that second lump I was like 95% sure that I had some form of lymphoma.

Dick:
Now, did you have any recent to suspect that lymphoma might visit your body in some way? Any family history or...?

Dave:
No family history of lymphomas but the women on both father and mother's side had like uterine cancer.

Dick:
So tell me about the feelings that came over you when it was confirmed?

Dave:
When it was confirmed by my surgeon, even though I wasn't surprised, I was still angry. Matter of fact, I think there's a gurney in the hospital that's got a dent in it from my hand. (laughs)

Dick:
Well, again, that's not a very uncommon emotion. And the question, Why me? Why is this happening to me?

Robert:
I had the same problem too.

In what ways do you feel the cancer has changed you?

Dick:
Tom, you were awfully young at the time of your diagnosis, but maybe you could share with us from your vantage point of somewhat, thirty years later? How has cancer changed you, do you think?

Tom:
Well, it's hard to know how cancer has changed because you know, I started from age three, so I don't know what it was like before. Everybody asked me, what do you feel like now as opposed to then. I don't know. But I can tell you that I feel like I'm being held back in some ways. Because you know back in the 70's there wasn't that much in emotional or spiritual, type cure. And it basically was like, hey, you know, you're cured, go on with on with your merry life, and prosper. Well, unfortunately when I got older, going through elementary and high school, I was having educational problems. I never failed any classes or anything, but I came close! And it wasn't till I got into my twenties that I realized that, hey, I can't seem to keep a job here. And I was having difficulties. I'd never gotten fired, but there was a pattern developing. And I ended up getting diagnosed with a condition called mixed organic brain disorder or syndrome. And basically, what happened was the type of radiation and chemo that I had in succession at that young age caused a growth development in my brain.

Dick:
And eventually you were able to link that to the treatment that you had for your cancer.

Tom:
That's correct. And of course, now I'm kind of working for myself, woodworking that I do to supplement my income. But I was one of the first who was able to qualify for Social Security with this particular type of disability. The judge told me that they had to create a whole new field of disability just for me.

Dick:
Over how long a period of time did you receive your radiation treatments?

Tom:
The radiation was within a period of several weeks, and they didn't seem to last very long. I mean, I was basically in remission quite soon, within a matter of months.

Dick:
But of course when we look back thirty years, too, we have to realize that radiation was not targeted nearly as carefully as it can be today.

Tom:
Yeah. But you could see, I mean you could look at my face and see that the top of my head, the hair is a different color than my beard. And it's where the hair fell out and came back in a different color. Most of the top of my head is slightly smaller than my jaw size, and I have some back problems as well, and that's the combination of the radiation and chemo.

Dick:
You also mentioned, Tom, and maybe you've just touched on them, but that there have been some long term side effects of the treatments. Have we covered those, or is there more to this spectrum of side effects?

Tom:
No, there are more. You know, first of all it does effect the endocrine system and I've got hypothyroidism because of the radiation chemo and I've got neurological disorder, memory and cognitive sequential problems with math and things, and I have osteoporosis and osteoarthritis. So I do have some difficulties with that, and then I guess you could call it post traumatic stress disorder, where you know it's like, when Dave and Robert got their cancer, they had the ability to get angry, and that helps in some ways in reducing that stress. Where a person like myself, I had nobody to get angry at, and the problems that I went through with school, a lot of the teachers said, "hey, you're stupid. You're not trying hard enough. You'll never amount to be anything." And if I'd known back then or if the doctors had done some research and found out that, hey, you've got some learning disabilities from this radiation and chemo, I could have gotten some tutoring. So I'm looking back on what could I possibly have been, could I have been a doctor or a lawyer or something, if I had gotten tutoring back then.

Dick:
Sure. And it might have made a difference if you had had the opportunity to express and process some of what you were feeling at the time.

Tom:
Yeah. But it also affected the family, as well. The relationship between my brother and myself and the rest of the family, you know, sibling rivalry. I was the one getting all the attention. So, cancer affects you then and now and forever.

How cancer impacts your family as well as you

Dick:
Well, and as they say often, as I have heard often, as an interviewer and broadcaster, cancer is not an individual disease, it's a family disease. It really does impact everybody.

Robert:
I know that one.

Dick:
Well tell us about that.

Tom:
It is a family disease where as far as the biological point, just about everybody in my past family has had some type of cancer or something. But as far as relationships go, it was not handled well by the doctor, because he basically told my parents, "Treat him like he's normal" like there's nothing wrong. And we were told never to tell anybody that I had cancer. Back then, because it was a blood disease, and basically there was a little bit of a worry that I would be held back or segregated because I had a blood cancer. This was back in the seventies, kind of like how the AIDS dilemma is happening today.

Dick:
Cancer carried a lot of fear with it back then. It still has some, but not like it was then. Now Dave, was that you or Robert who can relate to this family impact?

Robert:
This is Robert. Probably because of my wife having breast cancer, and then all of a sudden in the middle of her chemo treatments, I got diagnosed. So it was pretty stressful not just for us for the children and everything else and all. Plus, she wasn't in the hospital at the time because she was not allowed to go there because she was still under her chemo, and with her immune system being down, she couldn't be around any kind of medications or germs and all that stuff, especially around hospitals and all that.

Dick:
So there's the primary member of your support team and she can't be with you. Wow. I had it in my notes here to ask you how your children dealt with that, and you have mentioned them, so why don't we go there now? What was the impact on your kids? How old are they, first of all.

Robert:
I have a daughter who just turned six on March 1, I have a son who just turned two years old on March 15.

Dick:
So your son is really too young to grapple with these issues...

Robert:
My daughter was very scared, like from the time Mom was in the hospital, I'd come home by myself and she'd see the babysitter and then she'd see me and she wants to know where her Mom's at and sometimes in the middle of the night she'll basically wake up and get in bed with me while Mom was in the hospital for a week. And there were times she'd have these nightmares every once in awhile when we were together and all that, so there was intimacy and that kind of deal and all that, and used to not just having her Mom lose her hair, but her Dad, too.

Dick:
So then, for this little six year old, then five year old, are both her parents battling cancer at the same time.

Robert:
That's correct.

Dick:
What did you tell her?

Robert:
Basically what Mom told her was that she had an owwie that was removed from her right breast. My wife went through both a mastectomy and plastic surgery at the time.

Dick:
Reconstructive surgery?

Robert:
Yes. And that was basically a stressful six to eight hours there. I remember that very well, that was the week before the Fourth of July, come to think of it, of last year.

Dick:
Well, I don't want to jump too far ahead, but how are you both doing today?

Robert:
How are we both doing? We're getting along one day at a time, by the Grace of God, and that's basically one thing that's kept us strong, is basically is faith. Plus we have a good supporting family and a good supporting church family, that's helped with us.

How did you feel about yourself?

Dick:
We'll come back and address that in a little more detail later. I want to turn to Dave for a moment because I know that when you were going through treatment, Dave, you had to come to grips with some pretty powerful feelings. First of all, how did you feel about yourself, as a cancer patient?

Dave:
Well, even prior to having the cancer diagnosed, I had no self esteem whatsoever, and I'm not a very big man to begin with, 122 on a good day, and I dropped, because of the chemo and not being able to keep much food down for a little while, I dropped down to about 108 pounds, was bald headed and had a basket ball shaped head, so I didn't necessarily like to look in the mirror each morning.

Tom:
That's not a nice feeling.

Robert:
No it's not.

Dick:
So you had a flagging self-esteem anyway, and then along comes cancer, to make matters worse for you. But did you feel in a sense, a kind of a self hatred?

Dave:
Yes. I didn't recognize it as such until halfway through the chemo treatment.

Dick:
Help us understand that a little bit. Tell us why you felt that way.

Dave:
Okay. Part of the reason for that is I am a, I don't remember the fella's name who mentioned he was learning disabled? But I am, also. I am the oldest of three children, I was the one who did like be worst in school. So just like that caller mentioned, being held back, I was held back a lot. In fact I went to a school for the learning disable, while my brother and sister got to go to the same school together. So I felt like I was, I was substandard.

Tom:
I know exactly what you're talking about.

Dick:
Did you experience some of that too, Tom?

Tom:
Yeah. You feeling at the time that he has cancer while I'm feeling it after. You know, thirty years later. And it's kind of like I can't do the things that I want, you know, my mind is clear, I can think straight and everything and I've got great aspirations. But because of this cancer, I can't do what I wanna do.

Dick:
So for you, there are some pretty concrete reasons that you can identify as to why you can't do some of these things. You were really impacted negatively by the intensity of your treatment.

Tom:
Yeah. This doesn't just affect me, I'm kind of concerned about dating, for instance. Trying to go out and get myself married, I feel like I have to fill out a resume, you know, and the thing that is gonna kill me is telling that I had cancer. In that here are the list of things that I can't do, here's a list of things that I can do. It's like, I can go to college and everything and take the classes and get good grades, but just because I have the information, I can't recall the information to do the job. But yet I still have personal pride and intelligence and stuff, but also society kind of holds me back anyway, because I'm on disability income and I'm stuck on a flat income now where I'm not allowed to get a job.

Dick:
Because of the support you're receiving.

Tom:
Right. Because, you know, I can go out and do a job for awhile but I always get laid off or I get too tired, or I can't handle the stress. So it does affect you as far as - your confidence. So your self esteem gets affected big time.

Relationships and cancer

Dick:
Take us back for a moment, Tom, to this whole issue of relationships, because that obviously can impact somebody's life in a very profound way. Have you had disappointments in relationships?

Tom:
I've had some disappointments in relationships as far as dating and also with employment, do I tell these people that I have cancer and do they all of a sudden stereotype me? Or do I tell them, I have a condition called "mixed organic brain syndrome". I mean, I went to a rehab clinic one time to try to get some help, and they classified me as mentally retarded! And I'm like, I'm definitely not mentally retarded, here.

Dick:
Well that certainly isn't coming across in your conversation here.

(all say "No)

Tom:
But see, that's the problem is I come across as a very well educated man but when it comes down to push or shove and people don't understand how I do things, and they try to put their own standards on me, I just can't meet those standards. And if I do tell them the reason why, they automatically just write me of. "Well, he can't do the job." And so it's very difficult.

Dick:
And so even though your cancer was thirty years ago, in a lot of real ways, it's still dragging you down today.

Tom:
Yes, it is. And you know, it's even a drag down with my family, at times. Because I think that there's a lack of confidence in other people who know me, and I'm waiting for them to understand, its like "Hey. Why don't you give me a break? You know that I had cancer, you know what my conditions are, stop these expectations and just let me do my thing." In a way I kind of have the same problem with the government. I want to go out and do things and make some money and have a family and things, but unfortunately like - under the military care, if I get married, I lose all my benefits. And so that means I can't get married and if I go out and get you know bring somebody else into my house, that I'm on Section Eight, home, housing, because of my disability, if I get married I automatically lose my house.

Dave:
Just don't get married!

Tom:
Well, tough to say, but it's really tough being alone.

Dick:
Yeah, that's drawn some pretty firm lines around you that you seem not able to cross, which is very difficult.

Tom:
Yeah, because you know, I've got this urge that's inside of me it's like, I've got so much love to share and I think a lot of that love comes from having had cancer and going through basically "to hell and back" and I'm like, I know what people are going through. I have this ability to look at people and listen to people and understand what they're going for. I want to help people so much because I know what it's like to have a hardship. So, sometimes I step out a little bit too far or too fast and I kind of scare people away, because I want to help people so bad.

Dick:
Has it ever been suggested, Tom, that maybe you could work with a counselor, you know, in an attempt to deal with some of the issues that are causing such problems for you in your life?

Tom:
Well, I am involved in counseling.

Dick:
Oh, are you?

Tom:
Yeah. I've been involved with the neuropsychologist who originally diagnosed me with the problems of the neurological disorder. And it's been quite helpful and everything. But it gets to the point where you give them a lot of information, but they can't really tell you what to do to fix the problem. Their job basically is to listen, to help you find out what's going on, but right now I'm in a bit of a, a gridlock. I've gone basically as far as I can.

Dick:
It sounds, however, like you have a good attitude philosophically toward it and that you have a good grasp of your situation. I suspect that there's gonna come a time when you'll enjoy a breakthrough.

Tom:
I hope so. Because right now what I've done is, I joined in a group called the Relay for Life. I guess you are all familiar with that? (Dick: you bet.) And they're gonna hopefully put me on a committee and I may be of help with a fund raiser. I participated in one during the summer, and walking around the track and found my name. One of my cousins had put my name down in one of the luminaires. So, I know a lot about that information and I've got so much information to share, I think I'm gonna go there and maybe it'll pan out and I'll find somebody out there in that field, while we're walking around. We might be able to latch on to each other.

Dick:
You know, sometimes in that experience of trying to get back through volunteerism, that's exactly what happens. You'll connect with somebody who has an experience remarkably parallel to your own, and there comes that breakthrough.

Tom:
We're hoping, really really hard.

Sharing the strength

Dick:
We'll hope along with you, Tom. Robert, you have said that both you and your wife are cancer survivors. We don't want to pry into your personal relationships, but can you tell us how, having shared this cancer experience, and I'm assuming this was pretty much at the same time, when you were both ill.

Robert:
A few months in between, yeah.

Dick:
How, what has the impact been on your relationship with your wife?

Robert:
It's made me love her more than ever before. I know it's kind of hard, the intimacy is just not there yet, we're working on it, but it's just like one day at a time and all that there, and knowing that we have both been through this traumatic experience, it's just best to take one day at a time.

Dick:
So it has had an impact that you both can feel, on your sexuality.

Robert:
That's correct. We haven't really had much sexuality as you want to call it but we used to have a little cuddling, but we haven't gone the way yet. I feel like I'm still courting her.

Dick:
Does it make you feel resentful, that cancer has taken this away from the both of you?

Robert:
Part of me does that and her too, because not only did she have the situation with the cancer, two years ago she also had a partial hysterectomy when our son was born. That took a lot, so you here you already have a woman that's taken one part of her body out and two years later another part of her body taken out. So it's like, "why me, Lord?" But she's a strong woman and I'm really surprised because most women I've known would probably just give up hope.

Dick:
Well, though she may not be able to say it to you directly, I suspect, Robert, that she probably needs you now more than ever.

Robert:
She needs me more but she has a lot of ladies who are supporting her and she has a lot of people to talk to her, and we just talk more than ever before and everything like that. As a matter of fact, we had our first "date night" this past Saturday. It was our first time we had that since oh, right before the cancer.

Dick:
So you're both willing to give it time and give it the work it needs to grow back together. I think what you will find that over time, your relationship will probably deepen, as a result of what you have been through. But it requires a lot of patience, doesn't it?

Robert:
Definitely. Because the doctors and nurses and practitioners that saw us during the treatment, they can't believe what we went through, and we have a fine attitude. We know we're gonna fight this, because some couples just give up hope.

Tom:
That's one good side effect of cancer, your perseverance is just...

Robert:
Is this the Florida man I'm talking to?

Dick:
The Texas man.

Tom:
Yeah, it really really brings up your stick-to-it-iveness.

What helped you the most while going through the cancer experience?

Dick:
Well, we can hear that, Tom, in the way you express yourself. I'm gonna put you second in line for a question that I'm gonna put first to Dave, and Dave, that is, when you were going through your cancer experience, what helped you the most?

Dave:
I would say that what helped me the most was the group therapy that I was involved in. I was involved in group therapy prior to being diagnosed, was in group therapy for chemical dependency, as well as my really bad temper.

Dick:
Aha. So you were already working on some issues of your own, even before this diagnosis?

Dave:
That's correct.

Dick:
Now, did spirituality enter into it at all for you?

Dave:
Initially, no. Because at the time I was at the point in my life when I was even doubting that there was a God. Later on, of course, because of my experiences, I came to realize that yes, there was a God and that there was certainly a purpose for my having the cancer, but that's off the subject.

Dick:
Well, I was just curious. You know in many cases with patients that I have spoken to, those that didn't have much of a faith prior to their cancer, found that they really discovered that side of themselves, and those who were already spiritual found that it just increased manifestly in themselves because of this experience of cancer. Any of that occur in your case?

Dave:
For me, yes, but it took a great deal of time. First for that to happen, I had to become willing to believe that yes, there was a God, and then once I got to that point, and stopped questioning how come I had the cancer, then not only was I able to accept that yes, there was a God, but yes, there was a reason for the cancer.

Dick:
It's a process that we all go through. One of you guys, I don't recall which, mentioned feelings of anger early on after a diagnosis, and I think that's probably the first stage that many of us go through. And then you get around to resentment or self pity, and finally to acceptance. And maybe, ultimately, and I hear this in you, now Tom, okay, what can I do about it? How can I take this experience that in some ways has made me a better person, and go out and help others.

Tom:
Yeah, I'm making my lemonade, now, I guess you'd call it. (all laugh).

Dick:
Tom, look back on your cancer experience, and though you were a very young boy at the time, what helped you the most?

Tom:
Well, it's really difficult to find out what helped me the most because I really didn't know I'd had cancer till I got into junior high school.

Dick:
Oh, so it was that many years later before you realized what it had been?

Tom:
Right. And I started like thinking something isn't right, and I heard something that some kids have problems with math after they've had radiation, you know, but it wasn't until after I had graduated from high school, when I was 21, when I started doing research. And you know, it's like, all those emotions and things that I probably should have had, that you guys are having now? That's what I'm having now, thirty years later. Now, I'm angry. I am getting some help from my parents and things as far as keeping all the paperwork together, you know, applying for all the disability income and stuff like that, you know, trying to make a life for myself, but you know in a way I think I had cancer because I've got such a driving force, you know, it's like I don't take anything from anybody, you know. It's like, "don't get in my way" you know I see something, I want to go do it, I try to do my best, I usually get tired and drop out for awhile. But then I come back and I usually stick with it. It's like I'm doing wood working right now and I've gotten quite good at it and a lot of people know who I am and what I do, so I've developed some talent.

Dick:
Sure, that may be a great avenue for yourself, where you're not dependent on somebody else but can make your living based upon your own skills and creativity.

Tom:
But you know, my disability gets in the way and I get really frustrated and angry, because you know, I lose thousands of pencils, cause I can't remember where I put 'em.

Dick:
I wanted to give you an opportunity, too, Tom, to give your Mom some credit, because I know that when you were a boy going through this horrible stuff, she was really your advocate and it was probably because of her that you were properly diagnosed.

Tom:
Yeah, Mom doesn't take no for an answer, either. I know where it comes from. But it got to the point where she was there all the time. I remember at 1 o'clock, 3 o'clock and 5 o'clock in the morning, she was in there to give me my antibiotics, and whenever I had a fever or something, she always slept with the door open. I mean, she could hear a mouse run across the floor. So she was up, and she was there to help me out. They put me into programs, I mean I was baseball, soccer, and Boy Scouts, I'm an Eagle Scout, you know, I was in the Air Force for a short time so because of her stick-to-it-iveness you know, I had that and I'll try anything once, because of that. But you know, she was very instrumental in helping out and everything.

Dick:
Well, and it sounds like you have, as you say, inherited a lot of that from her, and I suspect the other thing that could be said about you is you're not gonna give up either.

Tom:
No, I'm always trying to find some way to help me emotionally. I'm trying to find my niche in life and I'm hoping this next endeavor I'm getting into, the Relay for Life, will find me a place where I'll be happy. But I'm involved in paint classes. Unfortunately, everybody in my paint class is married, so it doesn't help me any.

Dick:
Well, keep those antenna up, and I think this Relay for Life may be a nice pleasant surprise for you.

Finding comfort and support

Tom:
The only one thing that I wish I could find out there, it's been really difficult to find long term cancer survivor support groups. I mean, we're talking long time survivors, like myself, that has the same relationship. Because I went through a survivor course one time but it didn't work out with me because it was for breast cancer. And I didn't fit in. And I've gone to other survivor groups where they didn't want to hear my story about the long term side effects because some of their people in there were going through cancer research at the time, you know, being treated for cancer.

Dick:
Well, these support groups probably do need to have a focus. Maybe you should do as you've done in other situations and take the bull by the horns and start your own.

Tom:
Yeah, I've got a website that's out there, an article that I wrote, and I've got people writing to me from all over the world, asking me questions about my cancer. Unfortunately, there's not very many of us. It's to give an example, there were 40 in my study group, and only two that survived. So it's very difficult to find other people like myself.

Dick:
Life is often uphill, isn't it?

Tom:
Yeah, it is. When you go downhill, it's real fast.

Dick:
Robert, let me turn back to you for a moment. And when you were going through your experience of course, you had the added burden of supporting your wife. So you're comforting somebody else, who was comforting you?

Robert:
That's a good question. Well, basically I had some real good friends of our church who provided stuff for us like food and I have a few friends of mine who came over and took care of the household stuff like mowing the grass. But then again, it was during the winter months, so I didn't have any grass to cut.

Dick:
You probably didn't have any strength to do those kinds of things...

Robert:
No I didn't. From November to early March, I basically couldn't do any kind of lifting or anything like that. If I did that I'd be out of breath in a heartbeat because the growth around the chest area near the heart. And even five, ten minutes of exertion will make me feel mainly fatigued and drained. I basically had to just rely on other people which was pride stood in the way on some occasions, but then I just had to accept it, because I couldn't do it, and she couldn't do it either. And we had the ladies of the church provided meals for us and all that, there. Some meals were great, but there was one week we had Italian left and right. I mean we had lasagna, then we had ravioli, then spaghetti and it was like, yuk. (all laugh).

Tom:
Chemo makes everything taste like metal.

Dick:
But Robert, they were trying.

Robert:
Oh, they were, believe me.

Dick:
Now you've mentioned the church and the fact that some of your help came from there. How about faith for you and your own relationship with God?

Robert:
My wife and I are really God-fearing Christians, right now, and the faith has really grown stronger since our cancers. If I'll share with you the theme verse in the Bible has been First Peter, Chapter 4, 12-13, especially keeping us with our strength and all.

Dick:
Can you quote any of it?

Robert:
Yes. It says' "dear friends, do not be surprised if the painful trial you are suffering is through something strange that is happening to you, but rejoice that you are participating in the sufferings of Christ, that you may be overjoyed when His glory is revealed." This has been my motto since Day One.

Dick:
Pretty inspiring thoughts.

Robert:
My wife shared that with me a few days after I got back from the hospital. That was a trying experience, too, getting back from the hospital and all that there, because I had some real good caring professionals and both the oncologist and the radiologist from Day One - onto my treatments and all that.

Dick:
So did you feel that you had the kind of support you needed from the medical community?

Robert:
Yes, and they keep on top of things, too, and everything else, from the test results and the blood work and the chemo, because they, which one had the chemo back in 72 or 73... Tom? Yeah, because now they've got medications that allow you not to become too nauseated, after the chemo. Because when my granddad had chemo during the early seventies, he was sick as a dog for weeks and on in, so when Tom was sharing about his chemotherapy it sort of relates to what my Granddad went through before his last days.

Lifestyle changes

Dick:
Robert, I think you maybe also shared with us that some of the discoveries you made relating to friends were not all that positive, while you did have some friends that rallied to you, did you have others that turned away.

Robert:
We have some that just basically turned away. In the past we'll get together, hang out, do things, but because of the cancer, you know, you leave phone messages, they don't return calls, they don't even call themselves. So we have a very handful of friends we're very trusting in, loving, and what's going on.

Dick:
Do you think that those who pulled away from you, Robert, are afraid?

Robert:
I would think so. They don't understand. And from my personal experience and for what my wife is going through, they don't always, they don't have a certain person they relate to, and most people we are friends with now either have somebody a father or mother or sister brother who has cancer, so we kind of relate and know what's going on.

Dick:
Well, these stories sure do underscore the fact that cancer can bring about some incredible changes in our lives.

Robert:
Changed my diet too, because I used to be a meat and potatoes man, but I've kind of reduced that now, too.

Dick:
Tell us about that. Is that a lifestyle change that you've made consciously?

Robert:
Gradually. Eat more broccoli and cauliflower, try to eat more fruit than I used to. Besides something simple, banana and apple, going with cantaloupe and watermelon and grapes and raisins and all that stuff. And eating a lot of bran and fiber.

Dick:
You know, there's a growing school of thought that a lot of cancer could be related to diet in a very direct way, so I think you're probably on the right track there. Do either of you other guys follow different diets now than you did earlier in your lives?

Tom:
Well as far as mine, me being three, basically they told me that I was cured, our whole family, we're meat and potatoes.

Dick:
How about now?

Tom:
Now? I've gotten to a point that my cholesterol is really, really high because my thyroid's off, so we're really starting to control the amounts of foods that we'll be eating. We haven't necessarily changed what we eat, just the amounts. We're not gorging ourselves any more.

Dick:
Dave, how about you?

Dave:
Interestingly enough, prior to chemo I was also a meat and potatoes guy. During chemo I, not that I lost the taste for meat, but I just decided to stop eating meat.

Dick:
Entirely?

Dave:
Not entirely. I'm what they call an octo-lacto vegetarian--chicken and eggs.

Robert:
I eat that too.

Dick:
And how about fish?

Dave:
I do eat some fish, yeah. But bacon and stuff like that, no.

Tom:
We still eat the same things but we're what you call the avid label readers. Really look into what it is we're eating. And most of the pre prepared foods we don't go with those as often because they're full of salt.

Dick:
Sounds like Robert's gonna get on your case a little bit, Tom and tell you to step up the fruits and vegetables.

Robert:
I wouldn't do that. My wife does that to me. (all laugh)

Tom:
I need a wife, that's what I need.

The attitude of friends in times of need

Dick:
Dave, let me ask you the question about friends, because I'm interested to know if that happened in your case, if after your cancer experience you had any friends who just really backed away and it became uncomfortable for them to be around you.

Dave:
Well, going in to cancer, I didn't have any friends to begin with. And let me say that just prior to cancer, I was an active alcoholic, so alcoholics don't have friends. Since having cancer, though, strange thing, the friends I seem to gravitate to, they always seem to be cancer survivors like I am. It's not something we talk about right away, it's like "Oh, you're a cancer survivor, too? Oh, cool."

Dick:
Isn't that interesting, that you don't know that at first but you are drawn together for some reason that you then discover later? Very interesting. There's a story, Dave, that I'd like to ask you to share, if you would, and that's this unexpected bond, you know, speaking of people that we meet, but this was a bond with a nurse that you met during your treatment. Tell us about that.

Dave:
(laughing) Oh, yeah. I was wondering if you'd bring that up. Okay. I'm a musician, I'm a piano player and I'm also a singer, and the nurse that administered my chemo treatment was, herself, a professional singer on the side. As a matter of fact, she was a Barbra Streisand "sing-alike". I'm not talkin' politics. She also had a great deal of patience. I'm not an ornery patient, I'm just an extremely nervous patient.

Dick:
But the fact that you shared this music thing, did that allow you to open up do you think, a little bit more, in talking with her about your cancer experience?

Dave:
At that point in my life, I wasn't willing to open up to anyone, except if I absolutely positively had to.

Dick:
Was it out of fear or lack of trust, or do you know?

Dave:
It was primarily fear-based. My conception of what a man was meant that if I was a man, I couldn't be afraid, and if I told you I was afraid, then I couldn't be a man. Which of course, is bogus.

Dick:
Well, we hope that you know, new thinking will persuade us that it is bogus, because you know fear is a real thing, regardless of your gender.

Robert:
And men do cry, too. I can tell you all about that.

Dick:
Yeah. Well, I think all of us probably share that as part of this experience, too. There is fear involved, and uncertainty, and you know, when you look at the negative aspects that this can introduce in your life, sometimes the hill seems pretty steep. I want to get around now to when you talk to other survivors, all three of you, and Robert, maybe I can begin with you, what are the questions you like to ask of other cancer survivors.

Robert:
Good question. Pretty much how they go about their daily lives, take it one day at a time, or, give them more than you normally do, or, that's really a tough question, because everybody has different lifestyles, what they deal with. Some went back to the old lifestyles, others went to a drastic lifestyle.

Emotional experiences

Dick:
Sure. Anybody of the three of you had a very emotional experience? Talking on the telephone or face to face with another survivor?

Tom:
Yes. This is hard. Not really necessarily talking to other people I've had an emotional experience, cause one I've not been able to find anybody that was in my same boat. But I can't watch any kind of a TV show or commercial or anything that has to deal with somebody having had cancer. It's very difficult. Some people I have had contact with on the internet, I find myself not necessarily asking them questions, I'm more or less sharing information. Because I've been alone for so long and not being able to talk to anybody about it, I've done research over the internet the last ten twelve years and I've learned a great deal of information. I'm so full of information right now I'm just kind of finding people and sharing it with them and basically helping them rather than trying to find help for myself.

Dick:
I'm wondering if the other two of you experience any of that, too, Robert or Dave, if you feel now that because of this experience that you have had, you have something you can share with others that may help them.

Robert:
Yes, I have. Matter of fact, I went on my alumni directory to the internet and about a week I got an e-mail back from the lady who's in charge of it who is a breast cancer survivor who's now been rediagnosed with it. She had radiation ten years ago and now she's undergoing chemotherapy right now.

Dick:
Amazing how these connections can be drawn, isn't it, just around that experience of cancer.

Robert:
And I think it was Tom who mentioned he has a hard time watching TV whatever because my wife, her mother died of ovarian cancer so every once in a while there's a special, like for example when Gilda Radner died of ovarian cancer, they had a special on her on one of the channels out here, and she was glued to that. You couldn't hear a hearbeat, you couldn't hear a pin drop, she was just like, zoned in there. And there were tears in her eyes and she cried then. There are days you have to watch out for that, too, around her Mom's birthday, Mother's Day, and Christmas.

Tom:
Sometimes when I watch these TV programs, seeing a lot of these cancer kids, you know, they've got smiles on their faces and they're talking about how they're getting all this extra emotional support and their families are helping them, and you know, now they have chemo pumps, instead of me having to stay in there for a week to get chemo, I get jealous and angry that they've got such much better treatment now than what I did. And of course at the age of fourteen, the military kind of lost me in the crowd and completely forgot to do cancer follow ups on me.

Dick:
Well, Tom, I get a sense from you however, there was a football coach here in Seattle used to say all the time that we have to play the hand we're dealt.

Tom:
That's what I do.

Dick:
And that's what you do and that comes through very clearly. So, as much as you have a lot to overcome, it just seems to me in this conversation that you've got the strength to do it, so I wish you well as you continue your day to day.

Tom:
But you know what I'm afraid of, is when having a conversation with somebody that tells me that you're not doing good enough, and I have to go back and tell them, Hey, I'm doing the best I can with the cards that got dealt me. And they don't want to do that because I'm not like that.

How are you doing now?

Dick:
Sure. Well, it's really not anybody else's place to tell you that you're not good enough. What would you say about the state of your health today, Robert? How are you doing?

Robert:
I'm doing fine. I'm playing softball right now, been playing ever since I got off my disability on the 31st of March I started playing Spring Lake,

Dick:
You got all your strength back?

Robert:
I'm getting there, but the heat index around here just wears me out.

Dick:
Yeah, that's right, don't do too much...

Robert:
Now that Ms. Maureen Regan passed on with skin cancer, I'm hesitant to go outside and do yard work on certain days.

Dick:
Makes us more aware of a lot of things.

Robert:
But I'm drinking a lot of water and just taking one day at a time, and trying to get my strength back and doing regular exercises when I can. My wife does the same thing, too.

Dick:
How about you Dave, what are you doing to stay healthy?

Dave:
I'm involved in martial arts, I'm a long distance bicyclist, am actually in better shape now than when I was in high school.

Dick:
And are you keeping up with the music?

Dave:
Absolutely. I still play keyboard, I still sing. Matter of fact, I play keyboard at two different churches. And one church I play in is an up tempo praise service, and even though I'm in the back of the song leader and the band leader, who are both like six foot tall and I'm like five foot three, everyone seems to see me more than them. I'm in the back bopping around having fun.

Robert:
I'm six foot four myself. I know how those five foot three people are. (laughs) especially playing basketball.

Tom:
I'm a five foot one guy, so down underneath low between the legs.

Dick:
You hear groups of women all the time saying that men have a tough time talking among themselves. I think we did pretty well, today, don't you, guys?

All:
Oh yeah. I'll say.

Dick:
I'll tell ya, I do sometimes feel that I have one of the world's great jobs because I get to meet interesting people on these programs and not only do I learn a great deal from all of you, but I draw inspiration from all of you, too. So I want to end by saying thank you to all three of you for being as willing as you have been to be very open, to share your lives with us, and as we reach the end of the show, I hope this discussion has helped those listeners sort through some of the issues that may be a part of their lives. Again, a big thanks to our guests, Dave, Robert, and to Tom for their willingness to share their thoughts and feelings, and their lives with us today. Our hope is of course that these experiences will help our listeners think about and talk about their own concerns in positive ways. I want to say to everybody who's listening to tune in to other discussions we have available on our 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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