Beating the odds: Survivors of a poor prognosis

Dan	Sally	JoAnn

Welcome and Introduction of Participants: Dr. Harpham, Dan, Sally, JoAnn

Dr. Harpham:
Hello, and welcome to the American Cancer Society's Cancer Survivors Network. I'm Dr. Wendy Harpham, your host. Today I will be talking to three survivors from across the country, all of whom were given a poor prognosis when diagnosed with their cancers, have gone through treatment, and are doing well now. Today we'll talk with them about beating the odds. As a doctor of internal medicine, and also a ten-year lymphoma survivor myself, I'm looking forward to hearing what our guests have to say today, about going through the personal stages of denial; anger, and acceptance. Dealing with the mental and physical aspects of a long treatment plan. The realization of what is important to you. Being treated as a statistic, and having faith in hard times.

Before we open up the discussion, I will briefly introduce our guests. Our first guest is Dan, and he is a 55 year old survivor of Stage Four colon cancer. In 1994, after months of rectal bleeding, he was evaluated and found to have colon cancer, which had spread to the liver. Dan underwent surgical removal of the rectum and the area of his liver which contained cancer, followed by seven weeks of radiation, and a year of chemotherapy. Dan is married and lives in New Jersey. Hi, Dan. Thanks for being part of our show today.

Dan:
My pleasure. Thank you.

Dr. Harpham:
Next I'd like to introduce Sally, from Arkansas. Sally is 53 years old, with a grown son. In 1993 she lost her husband to cancer. In October of 2000, after a month of intermittent abdominal pain, and a number of tests that didn't reveal the cause of her symptoms, she underwent colonoscopy, a look at the colon, that revealed a large Stage Four colon cancer. Further evaluation showed that it had spread. She was told that without treatment, she wouldn't last a year. Sally took chemotherapy, with many of her scheduled doses delayed by infection. She's now nearing the end of her chemotherapy, and her cancer is in remission. Welcome, Sally.

Sally:
Hi! Wendy. I'm glad to be here, all the way around.

Dr. Harpham:
And our third guest, from Pennsylvania, is Jo Ann, a 67 year old cancer survivor. In 1965, after a year of symptoms and repeated evaluations by one doctor, she sought a second opinion from another doctor, and was diagnosed with advanced cervical cancer. She underwent extensive cobalt and radium treatments, and the cancer went into remission. 27 years later, in late 1992, she began having problems again. She was found to have significant damage from her past surgeries and treatments, as well as a new carcinoma of the bladder, with extensive abdominal invasion. She underwent highly experimental and aggressive surgery, to remove her entire bladder and much of her remaining colon, followed by a week in the intensive care unit, and then many, many months of rehabilitation. Jo Ann is here to tell us about what helped her deal with her cancers. Welcome, Jo Ann.

Jo Ann:
Hi, Wendy. This is Jo Ann. I'm very happy to be here today.

Dealing with a poor prognosis

Dr. Harpham:
Well, all of you have such compelling stories. I'm really glad to have you here to talk through how to deal with a poor prognosis on today's show of Cancer Survivors Network. Let's start at the beginning. Any time someone hears those words, "I'm sorry, you have cancer." Fear rises to the surface. Thanks to advances in diagnosis and treatment, this fear is easily calmed for some, when the diagnosis is of an early, curable cancer, or the fear is tamed when it's a type of cancer that can be cured with today's treatments. For the three of you, your prognosis was grim. The statistics indicated that, although it might be possible to survive, it was likely that you wouldn't even given the best of available cancer treatment. So, let's talk about the experience of learning the diagnosis, when the prognosis is poor, and how to deal with this terrifying news. Dan, you were diagnosed with metastatic colon cancer. What were you told about this diagnosis and your chance of surviving?

Dan:
Actually, I wasn't told a lot about it. I actually had to find out most of it myself by going on to the Internet and finding out what the exact prognosis would be.

Dr. Harpham:
Well, what had your doctors told you about that, and then what did you read?

Dan:
My doctors told me very little. For example, I found out myself that it was Stage Four and I found out myself what Stage Four actually meant. Also, it was very interesting and I think that one of the things that maybe oncologists do is they're uncomfortable in certain circumstances telling people exactly what it means, so you get really small doses of information, up until the point where finally it occurs to you that this really is as bad as it gets.

Dr. Harpham:
What was that experience like, reading on the internet about your prognosis?

Dan:
Well. It was very difficult, particularly the statistics that showed that the prognosis was so poor. But a very interesting thing happened, that in my case and this might be the case with the others; I said, "I don't know if I'm going to be able to beat this. But I do know that even if I don't, I've gotta feel like I've tried everything." So I wanted to do everything medically, oncologically, emotionally, spiritually, that I could, so that I would feel like if I did lose the battle, that I did my best. That as a human being I had an obligation to try to beat the thing. And so, that was what was in my mind. I had to try everything, within reason. So that's where I was coming from, pretty much right out of the box.

Dr. Harpham:
How did you share your knowledge of your prognosis with your doctors?

Dan:
Well, I remember telling my oncologist, this was after the surgery, in fact, in chemotherapy, so this was after the surgery and after the radiation, I was actually in chemotherapy, and I said to my doctor, "Do I have Stage Four?" And at that point, he told me, yes. So this is probably five months after the diagnosis, no one had told me that I had in fact, had Stage Four or that the prognosis was as poor as it was.

Dr. Harpham:
Well, how do you think your thoughts and feelings about your prognosis have changed over time?

Dan:
Well, I'm gonna have to ask you to maybe explain your question a little better.

Dr. Harpham:
Okay, you know you have that initial shock when you saw on the internet that your prognosis was terrible, and then you had that mind shift, where you said, well, I may not be able to control the outcome, but I sure can control everything I do to try to affect the outcome. And that seemed to have empowered you and calmed you.

Dan:
Yeah, it really did, as a matter of fact. I was diagnosed in September of 1994 and one of the things that I experienced, and again, maybe the others have, is regardless of what human endeavor you seem to be involved with, when you have this kind of a diagnosis, it's always right in your face. So, regardless of what you do, if you're out driving a car, if you go to an event, you go shopping, whatever it is, your mind always comes back to the fact that you have cancer and that it's Stage Four. But very interestingly, in February, which is five months after the diagnosis and right after the oncologist told me that, yes it was Stage Four, something very interesting happened to me. It was like someone had just flipped a switch in my brain, and I stopped thinking about it, and since that time, and that's a long time ago now, the only time I think about it is when I'm going for a treatment for you know, a CT scan or a checkup. So it was very interesting...

Dr. Harpham:
Do you think that conversation with the doctor had something to do with flipping the switch?

Dan:
I think it's entirely possible.

Dr. Harpham:
What are your feelings about talking about a prognosis with a physician?

Dan:
Well, I feel that everyone should do it but I don't feel that in all cases, the physician is going to be honest with you, based on maybe that physician's evaluation of what he or she may think that you want to hear.

Dr. Harpham:
Well, looking back just for you, Dan, do you wish things were done differently at the outset regarding talking about your prognosis?

Dan:
Yeah, I think I should have had more information about how poor the prognosis was. I have no complaints, everything worked out so well for me. But I think that somehow I was entitled to have that information earlier and without having to dig it out myself.

Talking to the doctor about your prognosis

Dr. Harpham:
Well, Sally, you also had an advanced colon cancer. What were you told by your physicians about your prognosis?

Sally:
Well, at first when they said I had colon cancer Stage Four, I didn't know what Stage Four was. I was like Dan. But I found that most of the physicians, because I'm known locally, you know, this is a small town, 90,000 people, that you know, it was information they didn't say that concerned me. You know they said well Stage Four and I said, well, what is Stage Four and they said metastatic cancer. And I said well what are you talking about here? And they said well you've got to take chemotherapy to survive, and I said, well what are we talking her timewise? And they said, well, less than a year, you know. So, I'm like Dan. I get on the internet, I start looking around and hear like three to six months and all this kind of stuff comes up, you know?

Dr. Harpham:
And how did that affect you when you read those initial reports?

Sally:
Well, you know, it seems like I can deal with anything as long as I know what's facing me, it's the fear of the unknown, just like when I found out well I went from one state to another trying to find out for sure if this was really Stage Four, and I was gonna do like Dan, all I could medically to keep myself going, and spiritually and emotionally, and hey, if I lose the battle it was because I was supposed to lose it, you know? That was my attitude from the onset, to just do everything medically I knew, get the best information I could, get the best care I could and just keep on truckin' you know?

Dr. Harpham:
Well, Dan described the first five months of his poor prognosis always being in a state he almost couldn't forget about it during the day. What about you?

Sally:
Well, I tried to keep my mind off of it but it's almost impossible to do. I'm thinking, well, what if I die? I mean, you know. What if, I mean when I go for the treatment I get real depressed because I see people in wheel chairs and stretchers, you know, skeletons, and no hair and all this. It's just a terrifying experience that you be well, one of those people, you know? But I just try to not focus on it. I try to focus on, well, I'm not gonna be one of those people.

Dr. Harpham:
And has your ability to do that changed over the months of your chemotherapy?

Sally:
Well, you mean thinking that I can beat it?

Dr. Harpham:
Yes.

Sally:
Well, the only thing is, I have a lot of respect for doctors and the medical profession, but there's only one person that really determines a person's life, and that's Jesus Christ. When I get depressed or down, I'm gonna look at Ecclesiastes 16 about man doesn't know everything. That I just have to keep on because I feel that once I've given up, I won't make it. And I'm a survivor!

Dr. Harpham:
And we are gonna talk about how faith plays a role in dealing with a poor prognosis. And Jo Ann, how about you? After surviving a first cancer for almost thirty years, you were diagnosed with an advanced bladder cancer with a poor prognosis. What were you told?

Jo Ann:
Hi. Actually, my doctor told me everything. Once I was diagnosed. Prior to an official diagnosis, I had been sent by another doctor for one test after another, and what it finally came down to was that they suspected I had cancer, but because of the previous radiation and cobalt. It's only very recently that they will even attempt surgery into that type an area. So they were just kind of, actually, I don't know what they were doing. And finally I took the bull by the horns and said, Listen, I'm going to Johns Hopkins. I instructed my primary physician to make arrangements, which they did. I was diagnosed there within three days, and my surgeon told me everything. Told me that it was Stage Four, told me that they would like to operate for experimental purposes. They made it very clear that my chances of coming off the operating table after this experimental surgery were "slim to none", was exactly the way he put it. So it was my choice. However, I had no other choice. That was my only, only shot at survival. And my attitude was that, of course, it's the only chance you have, I'm going to take it. And if it didn't work out, since this was for experimental purposes, that perhaps it would help some other individual in the future. Or they would learn some things about operating in radiated areas.

Facing your own mortality

Dr. Harpham:
That is a lot of emotion for a short amount of time. First you had the uncertainty of the abdominal pain that's not explained, and then in one short time you're told that you have a life-threatening cancer, it's very advanced, and the only treatment that might save your life, itself is very, very risky. How does it feel it to be facing your mortality, facing those sorts of situations?

Jo Ann:
Well, of course, it isn't anything that you would face if you didn't have to. However, I have a very, very strong faith, I always have. I've always felt that whatever happens is for some reason, some purpose and it isn't up to me to question it. I'm a very strong individual, and as a matter of fact, I told the surgeon, (laughing) my best friend had taken me to my appointment because it was 85 miles, I was at Johns Hopkins in Baltimore and I live in Pennsylvania. So this is an 85-mile one way trip. So my best friend had taken me for my appointment, my daughter was working, as was my son. And she went in with me to the doctor's office for the conference, and he said it was their decision whether or not they were even going to operate on me. They did not have to, since operating in a radiated area was very risky. I was Number Four at Johns Hopkins. And obviously, I've had the best result, considering that I had the worst prognosis.

Dr. Harpham:
And that brings us to the point that there is hope. Even when they say the prognosis is very, very bad. I mean. I'm talking to three people...

Jo Ann:
Oh, this is more than hope! I mean, I'm a walking miracle!

Telling people about your condition

Dr. Harpham:
Well, Jo Ann, you talk about your friend coming with you and I want to talk about sharing the bad news with friends. What things help, what things hurt. Dan, who did you share the news about your prognosis with?

Dan:
Well, it's very interesting because when I was first diagnosed before we knew it was Stage Four, and I had just had a colonoscopy and I was still pretty groggy from the experience and I had just gotten dressed and I was waiting for the sedatives to wear off and my wife was gonna come pick me up, the doctor told me that I had a malignancy, and he said, although we're sending you for a biopsy, he had been doing it long enough that he could tell me that it wasn't benign, that he was almost positive that it was malignant, and I was all by myself when I received that, so when my wife arrived a few minutes later and I told her, she was obviously extremely shocked. In terms of telling other people, the most difficult thing was to tell my parents, obviously, and to kind of break the news to them how serious it was when we found out.

Jo Ann:
My most difficult thing was telling my children. They are all grown, of course, but it was very, very difficult to, it's very difficult to tell children that their mother is probably going to die.

Dr. Harpham:
How did you tell them?

Jo Ann:
Well, I got two of them together, the other one lives in Florida, and he's the one that can't handle anything, anyway. He just, he shuts down, and tries to ignore the fact that this bad news exists. And I'm well aware of that with him. The other two, who happen to be the oldest, who's my daughter, and the youngest, who's a son, they expect things a little more realistically, so I got the two of them together at the same time, my and my daughter-in-law, my son's wife, and sat down and told them that this was what...they knew I'd been going to the doctor a lot and I think they believed it was something related to my earlier cancer, which was before they remembered anything. They knew about it, but...

Dr. Harpham:
But you just told them the truth.

Jo Ann:
I just told them right out.

Dr. Harpham:
And how do you think that helped them? How do you think it helped you?

Jo Ann:
Well, it helped me because, I just could not see the point in trying to hide it from them, and then all of a sudden they go with me for surgery and they're given the news that their mother died. No, I wanted them to be at least, you're never prepared for a parent dying or a child or whatever, but at least to have some foreknowledge that this was probably going to happen. Of course they were very upset but they kind of managed to work through it.

Dr. Harpham:
Sally, what about you? How did you share the news?

Sally:
I was unfortunate because I had the only son and my husband had died in 93 from colon cancer. I mean, when I told my son, it was horrible! He came to the hospital, I mean I thought I was in there just for gastritis, had the colonoscopy, found out I had Stage Four colon cancer, and he immediately, he thought I was gonna go out just like his father did. It was horrible.

Dr. Harpham:
How did he deal with that?

Sally:
I just said, now, I'm not dead yet, and I have to beat the odds and the statistics of this. I'm gonna do everything medically I can to stay alive. And you know, it still bothers him because he thinks if I feel bad one day, it means this is gonna be it. She's gonna be just like my dad, you know. But I explained to him that as long as there's life there's hope, and I'm just gonna keep on truckin'.

Dr. Harpham:
It sounds like all three of you actually were the cheerleaders for your support team. That you had to share with them about how you were gonna face it and move forward and nourish hope.

Jo Ann:
Well, I had raised my children as a single parent, in the days before very many people did that. And they know how stubborn and contrary I am! So when I told them, I said, you know, they said well, what did you tell the doctor? And I said, I told the doctor that, okay, so my chances are slim to none. I have a chance, right? And he said, yes, you do have A chance. So I said, okay, that's all I need. I said, you'll find out how contrary and stubborn people can be. And here I am, living proof of that.

Dr. Harpham:
Were there any things that family or friends said that made it harder to deal with a poor prognosis?

Dan:
I don't know there was anything that anyone said, but I remember one of the hardest things for me, going through this, was watching. It was harder, I think for my wife than it was for me. And it was hard for me to watch her as the care giver during this entire process. So that was real difficult because I actually I was in the hospital I guess for eleven days, and I used to tell her not to come there, because when she came to the hospital, just looking in her eyes, she was just so sad. It was harder for me to watch her. So I think very often it's harder for the caregiver than it is for the patient.

Jo Ann:
I had the exact same thought, that it was harder on my family than it was on me. Because you're absolutely right. I told the children since it was this far away, 190 mile round trip to get to the hospital, I was there for five and a half weeks. I said, don't take your life in your hands after you've worked all day trying to run down to visit me. Of course you know how kids are, they don't listen! But it really, it was harder on them, or just as hard, as it was on me.

Dr. Harpham:
Or harder in a different way. And what about you, Sally?

Sally:
Well, it was real hard on me. As far as the caregiver, I was the caregiver. I didn't have anybody to take care of me. I have an identical twin sister and it bothered me that if something did happen to me, the reaction that she would have, and also, what would happen to my son? That was may major concern. I mean, such a grim prognosis, you know. It was horrible. Emotionally I just well, I guess I'm really stronger than I thought, because I'd always thought of myself as a weak person. But when I had to face Stage Four colon cancer, I just took the bull by the horns and said hey, I'm gonna do all I can and like Dan, -the same experience. But of course they're much further down the road. I've only been in treatment ten months.

Dealing with long-term treatment

Dr. Harpham:
All three of you chose to do whatever you could do to try to be cured of your cancers. You all underwent extensive and often risky treatment, for months. You were sick or debilitated from these treatments. That did ultimately save your life. You know it's one thing to say you want to go for a cure; it's another thing to actually undergo grueling treatments for months and months on end. And I'd like to discuss what it's like to deal with the mental and physical aspects of long treatment regimens. Dan, you had a year of treatment, and I understand you had a lot of pain during the treatment. (Dan says, "I still do".) Can you tell us what got you through?

Dan:
Maybe I'll back track just a little bit, because I know that everybody seems to think that you go through these stages of denial and then anger and then acceptance. But I think that one of the things that all three of us are saying here, it sounds like, if there was one common thread here, is that we got to the acceptance point pretty quickly. And so really, early on, we all said, okay, wait a minute. We have an obligation to beat this thing, or at least try to beat it, and it seems like we all did that in pretty short order. So I don't know that we spent a lot of time in denial or anger. And that's just a point I'd like to make.

Sally:
I feel the same way. I expected mine, as a matter of fact, one of the doctors wrote in a letter that I had handled it with "maturity". I mean I accepted mine at first because I mean, I knew I had to, because, when you get it like a death prognosis, that's the worst it gets. So I accepted it and decided that I had to do all I could to make it better.

Dr. Harpham:
The other theme I'm hearing from all three of you, is that with this acceptance comes an internal strength that maybe you weren't even aware you'd had before.

Jo Ann:
I think I accepted it as when we were returning home that day, my friend was with me, she said, "you're in shock, aren't you?" And I said, "No, I'm not." And she said, "How can you be so calm?" And I said, "Well, what do you want me to do, cry?" I mean. It wouldn't do any good. And my doctor, as Sally said, he wrote in a letter to another physician at a later date, that "she's a remarkable person".

Dan:
To answer the question, one of the things I think you go through when you're in long term care and you're experiencing pain, etc. etc. is you try, as a human being, try to rationalize it. And I remember that in my case, I rationalized that what I'm going through is probably what every human being will go through at some point. They may go through it when they're ten years old, they may go through it when they're ninety-five years old, but the prospect of death, and in this particular case, prospect of pain associated either ultimately with death or with recovery and/or cure, it's what everyone goes through. This is all part of being a human being. There are reasons why this is happening, although with our limited intellect, we're maybe not gonna understand what those reasons are. And I think that all of that rationalization is what gets you through it.

Dr. Harpham:
So, instead of feeling singled out or punished, you felt like you were having a human experience and something that all of us at some time will experience, and therefore you can get through it.

Dan:
Yes, and not only get through it, but when you do get through it, I think that you're infinitely better, or, not better, but infinitely smarter than someone who didn't go through this.

Dr. Harpham:
Or wiser.

Dan:
Wiser. Yeah, I mean, this is just such an incredible learning experience. I mean, it's the ultimate in dignity as far as I'm concerned. So if you do get through this, you really wind up being a human being who's a cut above 99% of the other human beings that are around, and you're able to live your life in a much different fashion.

Dr. Harpham:
Were you able to hold on to those thoughts and feelings, even during the day to day, you know, the pain, the limits, the treatments, the checkups, kind of the grueling part of the treatment, when you didn't feel good?

Dan:
Yeah. Yes. For the most part. But there were times when you would lapse. There were times where you would say, is this really worth it. I always tell people the story about when I was in the middle of the chemo, I was so convinced that I was gonna die that I went home and I wanted to save my wife the trouble of throwing out my clothes after I died, so I threw all my clothes out. And then, you know, luckily I had to go out and buy a new wardrobe, three or four months later when it occurred to me that hey, I might just live long enough to actually need some clothes. So it's kind of like a humorous piece of it. But you know, it's kind of like the stock market, you know, your feelings really fluctuate, but I think over all you're able to keep them within range.

Getting through the rough patches

Dr. Harpham:
And cancer treatment is notoriously referred to as a roller coaster. And for people with an excellent prognosis, they too, have down times, but they often lift themselves up by saying, Well, today's a bad day but my prognosis is great. How do you think those down times are affected by your knowledge that the prognosis is not good. Sally?

Sally:
Well the thing of it is is before I started the chemo therapy treatments I knew nothing. I mean, my husband got through chemo, but he did not take really agressive chemo, I think he just took it to keep from getting an obstruction and just dying right, you know, he took it for pain management, really. Okay, I'm taking the 5FUleukovorin to prolong my life, to save it or whatever you want to call it. But the thing, but what were we talking about?

Dr. Harpham:
Dealing with the ups and downs, but knowing that you have a poor prognosis.

Sally:
Okay, well you know like sometimes when I go through the chemotherapy, I developed a couple of infections of hemolytic anemia and staph and they made me very weak, but I continued to go. I drove myself to the hospital for the infusions, you know, which last three and four hours, laying on a bed to do it. But I wondered at some point in time, well, you know, if this is gonna get me, well let it get me, I don't wanna go through these chemotherapy treatments for nothin, you know what I mean?

Dr. Harpham:
So how did you get through those times?

Sally:
Well, I just kept going. One thing, I did not lose my hair, I'm a very vain person, I did not lose my hair. I did not lose any weight, and I just didn't, you know most people I would see in the chemo section at the cancer center, they had no hair, they were skeletons. That was really depressing, but I just said, well, you know, I must be singled out, because a lot of people that I talk with had the same experience I had, were not even Stage Four, had lost their hair, they were so sick to their stomach they couldn't drive, they couldn't hardly get around.

Dr. Harpham:
So you found something special about yourself that made you think that, even though usually people with this type of cancer have a bad prognosis, I'm kind of special. I didn't lose my hair. And maybe I'm gonna do better than everybody else.

Sally:
Well, what I really thought, Wendy, was, you know, everybody is different. When you're born everybody's different. I mean, no one is the same when it comes to being born or dying. So this is every experience is different I think for everybody.

Dr. Harpham:
And Sally, that is such an important point! Because nobody can predict how a patient's going to do. The prognosis is based on populations of people, not based on you.

Sally:
They're just statistics, that's all they are, you know? Just like Dan said, the statistics are very poor in a Stage Four, it's almost curtains right then. But you know, hey, everybody's different in how our body reacts and how my immune system reacts and how I reacted to it, it's all different for everybody.

Dr. Harpham:
And I encourage patients to use statistics to make a treatment decision, you want to know the statistics about your disease and the different treatment options, so you pick the one that will give you the best odds. But once you're doing treatment, especially if the statistics are bad, if you can let go of them, then you can move forward. When they're not helping you any more, once you've decided on what course of treatment you want.

Dr. Harpham:
In the counseling that I do, also, I try to debunk these statistics for people that I speak with who are recently diagnosed, and I do that by explaining to them that those statistics include an awful lot of people who didn't opt to do the things that you have to do. So they include people who were diagnosed and never had an operation. It includes people who were diagnosed and didn't have radiation. Or diagnosed and didn't have any chemotherapy. Or maybe quit their chemotherapy halfway through. The statistics of raw numbers of people who haven't died include people who are pretty on in age, so I mean, just to look at the statistic and say, this is the percentage of people who survive, is really very simplistic. The statistics I'm convinced include a lot of stuff in there that has to be further defined.

Jo Ann:
Statistically I was told that if I were fortunate enough to survive the surgery, I would be bedridden the rest of my life. My doctor was totally surprised when he came into the room one day and found that two of my nurses had me in a wheelchair. So he changed his diagnosis and said, "You're gonna be one of the lucky ones. You're going to live your life out in a wheelchair." My wheelchair is in a shed, and today I work part time, I volunteer a great deal, I live alone, I can do everything for myself except cut the grass. So, statistically you have to base it on your own feelings and what you feel you can do.

Dr. Harpham:
And statistics may say that you have a 70% chance of not surviving but for you it's 100%; either you do or you don't.

Jo Ann:
Yeah. My chances of survival, from the way the doctor told me, were probably one percent. And here I am! All these years later, and doing very well, as a matter of fact.

Dr. Harpham:
And talking about getting through the months and months of treatment. Another thing survivors often say is they just focus one day at a time. They don't look at the big picture. They just try to get through this morning and then they try to get through this afternoon. How did that play...

Jo Ann:
I still do that. I still live day by day by day. Because I can't go back and change the past. I sure can't see into the future. So I do that to this day. But that is something that I taught myself to do when I was in rehabilitation for so long.

Realizing the value of life

Dr. Harpham:
What about you, Sally? The one day at a time?

Sally:
Well, you know what? I try to live one day at a time, but I've always been the type of person, I'm a whole hog or nothin' - "it's sink or swim" is my personality. What I did, Wendy, was I plan for the future. Like, I changed apartments in the last two months. You know what I'm talking about? I mean, I go on with my life like I'm gonna live forever.

Dan:
I would agree with that.

Jo Ann:
Oh yeah.

Dan:
That was really important to me, too, because I appreciate the fact that I might have a chance to live here, but I wanted to live pretty much on my own terms. So, if I was going to live, I was going to live eating cheeseburgers and if I wanted a glass of wine, I'd have a glass of wine. It was really important to me that as much as possible it would be life as normal and life as usual. And that was important and I think that kept me going. I had no interest in living if I had to have all kinds of restrictions.

Jo Ann:
I have done that, Dan, and you really can. Sally, you're still taking some of your treatments. You will find that you can do that. You can live life fully.

Sally:
You know, like a lot of people when they find out they have cancer, they change their eating habits, they change their lifestyle, okay, I continued to eat Fritos, Doritos, cupcakes in the morning. This is terrible, but when my husband passed away, I started smoking. Okay, when I found out I had cancer, no, stopping smoking? No! I smoked more! It seems like it calmed my nerves. And you know, unless I can live on my own terms and look forward to the future on my own terms, you know, who wants to eat broccoli and tofu and all that you know? So, hey, I'm gonna take my chances and continue with my Fritos like somebody suggested. When I went the to doctor I said I had cheese puffs and a Hershey bar on the way out here. And they just look at me and say I'm nuts.

Jo Ann:
Sally, that's why I'm not in a wheelchair today, because I wasn't willing to live life on those terms. I was like you to, I was gonna do what I want to, within reason, of course. I mean you learn your limitations after a while, what you can and can't do. But I basically eat and drink anything and everything that I want to. I'm limited in getting around because I have cardiovascular disease and I get short of breath very quickly, so I can't walk any distances or anything. But basically that's how I got out of the wheelchair, because I did not want to, I wanted a better quality of life.

Dan:
I agree with that 100%. I think smoking might be pushing it a little bit, but beyond that I probably agree with you.

Sally:
Yes, I know I shouldn't smoke, but if it calms my nerves, I just as soon take that than some tranquillizer, you know, and that's just how I look at it. Sally, it's 200 more times more likely to go to your lymph nodes, but I've read enough on the internet to know it will probably go to my lymph nodes anyway, and if the chemo is successful, it'll stop it, you know.

Dr. Harpham:
Well, this thing I'm hearing is that you can choose how you live your life, and after your cancer, you're all very aware of how you're choosing your life. And that's liberating, it makes your life feel richer, even if other people don't agree with your choices. Dan, how do you think your cancer experience changed your priorities? Think about your priorities before your cancer and after.

Dan:
It's very interesting because certainly I place a much higher value on every day. I'm certainly less materialistic than I was before the cancer. (Sally and Jo Ann say they agree). And certainly I have a unique appreciation for my wife that I never had before I was sick. And the level of care that she gave and the level of concern that she had, that could only have come out because of this catastrophic occurrence. And so my priorities are more around her than they ever were. And so it's a very, just generally, as I alluded to before, you just become a wiser human being.

Sally:
I agree with Dan about that. You really don't appreciate people, like, okay, like things that were important to me before I found out I had cancer are no longer important to me. I mean you know, if I forget to pay my water bill before the cutoff date, I mean, I was always very responsible before I had cancer. I mean, I really was. And all at once, I thought, well I hope they don't stop the water today, because I don't know if I paid the bill or not. Know what I mean? Do you all understand that? (all say yes)

Jo Ann:
I understand that completely. My feelings on mundane matters are, "what's the worst possible thing that can happen?" So, don't worry about it. Worrying only ages you. I guess. I don't know. I don't worry.

Sally:
I could probably get angry at a friend or my sister about something, and I'd just kind of tell her off, well, now that I've had cancer, I'm not, I don't tell her off as much as I did before, do you understand what I'm saying? (um hmm) I'm like Dan. I appreciate my sister more, my son more, my friends more.

Jo Ann:
Dan really appreciates his wife. I've tried to show my kids how much I appreciated that they were there for me. We don't dwell on this, of course, because, number one, I have a life to get on with, you know. I can't dwell on what happened, you know, some years ago. But I find that I'm more "there" for 'em, because you know, my kids are grown and have their own families and so on, but it's still I found that they still want their mother to be there for them, no matter how old they get, and so on. And the grandchildren the same way.

Keeping the faith

Dr. Harpham:
So you see your relationships very differently. For many patients, their cancer is a test of faith, especially when the prognosis is poor and the going is rough, your spiritual beliefs are tested. Dan, can you tell us a little bit about how spirituality played into your survivorship, during and after treatment?

Dan:
Sure. I was what you might call a lapsed Catholic, and as I was going through chemotherapy you had these days where you felt rather weak or nauseous or whatever, the side effects were actually relatively insignificant, I mean they were not anything really severe. I felt that my faith got me through those. I would start off every day by going to mass, and I felt that was just a great way of getting the strength to get through the day, and at the same time, kind of saying thank you that I was still around and that I had the opportunity to even be there. So I think that it helped me, it was an incredible source of strength for me, that I kind of feel bad when people have, I don't care what you believe, but when people don't have that to fall back on, I think it would be very difficult to get through this as an atheist.

Dr. Harpham:
What about after your treatments ended?

Dan:
After my treatments ended I continued to build on that and I think the way we interact with other human beings, and the superior way in which we do that, and I hear that from the entire group that's speaking here, I think that that is a direct reflection of the growth that we experience from our spiritual, I mean, that's spiritual growth, not a physical growth.

Jo Ann:
I agree with you Dan, I don't care what beliefs someone has, I just hope that they have some belief. Because I really never lost faith and I never questioned why this was happening to me. I've always just known that everything happens for a reason, and I found later, I was on so many prayer lists, no wonder I survived. But you, I agree wholeheartedly with you. I do not know how an atheist would get through something like this. I really don't, because that faith and trust, I don't know, is just really what keeps you going. I'm the type person, I mean, I'm like you too, my faith has continued throughout, pretty much throughout my entire life, as it does today, and I'm the type person that if I'm traveling, I drive back and forth to Florida several times a year to visit my son down there, and I travel alone a lot of times. I talk to the Higher Being as if they're sitting right there in the car with me.

Dr. Harpham:
It's part of your every day life. (she says, Oh, yeah.) What about you, Sally?

Sally:
Well, I'm what you call a crisis Christian. When I found out I had cancer, I'm a Catholic, also, and you know, I thought well, my priorities, I've got to get closer to God about this, because the strength is gonna come from him, and so what I did was instead of reading the Redbook or a novel or something, I started picking up the Bible so I think it has helped me to know, that whatever happens, just like I said in my life, that regardless of what happens, I mean, there's a plan for me, I don't know what it is, but obviously I'm around to fill the plan. I thought when I first had cancer that if I didn't survive, then I really wasn't supposed to. It was just in God's plan. But in the back of my mind, I just left it up to God to take care of me, I guess he takes care of idiots and fools, of which I am one of them. I mean, there's a plan for everybody, and if the plan was for me to die, then I'd have done it, with the Stage Four cancer plus the infections.

I mean when I was in the hospital, the nurse, one nurse had been off for the weekend, I was so bad, with that hemolytic anemia or the staph, I can't remember which, that the nurse thought that I had died because my name was off the door. And she told another nurse, "Well, I see Sally's gone." She says, yeah, I really hate that. And she said, hate it, what are you talking about? She said, she walked out of here with her balloons and her get-well cards and everything else just like she walked in. I mean, I was never really fearful of dying. I mean I think that's the thing, because hey, you can't keep someone from dying if their time is up, their number's up. Do you agree with that, Dan?

Jo Ann:
I do. Dan?

Dan:
Yeah, I certainly do. That's all part of acceptance, though.

Jo Ann:
My attitude is this, the people say, they still say to me, friends and acquaintances, I can't believe that you survived all of that and you're still here. And my stock answer is, "well, the good Lord wasn't done with me yet. There's something here that he wants me to do, first." I mean, I don't know why I'm still here.

Dan:
And I have a neat story about that. Because you know, after my cancer and I had to reinvent myself, and I started a new career, and the career is in staffing and recruiting, and one of my first assignments at the company that I work for now, was to staff the oncology department. And I remember sitting there and thinking, Wow, this has really gone full circle because now I'm on the other side of the desk, and I'm interviewing oncologists and clinical research people to come to work for a pharmaceutical company, and these are the actual people who, ten or fifteen years from now, the people I'm interviewing right now are the ones coming up with the cures that are going to be available ten, fifteen years from now, just like someone fifteen or twenty years ago. So, it was really interesting, and talk about maybe having a purpose, I couldn't help but believe that you know, those fifteen oncologists and clinical research people that I hired, were the result of my going full circle and there being some purpose for it.

Jo Ann:
Dan, you already had a lot of background to hire into that field, but believe it or not, considering that I'm a two-time fourth stage both time survivor, I have never had chemotherapy. But I've had friends who have, and I'm rather glad that the first time that I had cancer, that wasn't available. So it was cobalt and radium. And the second time there was nothing but surgery.

Concluding thoughts

Dr. Harpham:
Jo Ann, I hate to interrupt you, but we're gonna have to wind down soon. So, one of the things that I'm hearing is that cancer really affects all aspects of your life, it affects your physical self, your spiritual self, your thoughts, your feelings. (Jo Ann interrupts with "your financial self" and laughs) Your financial self, absolutely. And we didn't get a chance to go over that. But what I'm also hearing is that when you have a poor prognosis, there is still hope and you can make choices about how you deal with your illness. And for many of you, it's been a hard experience but it's led to some wonderful changes in your lives. What many people refer to as "silver lining".

(All agree.)

Dr. Harpham:
And before I close, I'd just like to ask each one of you to give me one last thing you might want to say about dealing with a difficult prognosis. Dan?

Dan:
I think I would say that there is always hope and there are probably a lot of people who have been able to survive regardless of the prognosis, because everyone is different, everyone reacts different, and there's more and more that's available medically, as time goes on, so there's every reason for anyone who's in this situation to have hope.

Dr. Harpham:
Jo Ann?

Jo Ann:
Well, never give up hope. And don't waste your time questioning why this is happening to me, save your strength to rebuild your life, to just to do everything you possibly can and keep a very positive state of mind. That's very important.

Dr. Harpham:
Sally?

Sally:
I agree with both Dan and Jo Ann about keeping a positive attitude, and what I would say to anybody that has fourth Stage colon cancer. Of course if they get any kind of cancer, hey, as long as there's life, there's hope. And the only losers are the ones that give up. You feel like that too, Dan?

Dan: Sure.

Sally: I mean, as long as there's, I'm gonna keep on trying, I don't care what the,how bad the prognosis is.

Dr. Harpham: And I believe you!

Jo Ann: When you look at my prognosis, you know, keep that in mind. Here I am.

Sally:
I beat the statistics with other things, and I'm gonna beat this one. I feel just like Dan and Jo Ann, I think it comes from the inner strength of courage. But I've always been like I said, a person that would, it's feast or famine for me, you know. I'm a very obsessive personality so I was almost obsessed with getting rid of it or finding a cure or doing the best I could with what was available medically out there for me.

Dr. Harpham:
Well, Sally, Dan and Jo Ann, I really want to thank you for your willingness to share your stories, your thoughts, your feelings and a part of your life with us today. I hope our discussion has helped to sort through some of the issues that may be part of your life, and I hope that their experiences will help you think about and talk about your own concerns in healing ways. I encourage you to listen to other discussions we have available on the website or by telephone. For the American Cancer Society's Cancer Survivors Network, I'm Dr. Wendy Harpham, wishing each of you a great day, today and every day.

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