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Lymphoma/Leukemia, Females Age 34-45, In Recurrence: Show # 51


Talk Shows & Stories :  In Recurrence  :  Lymphoma/Leukemia, F 34-45

Lymphoma/Leukemia, Females Age 34-45, In Recurrence

Contents

1

Welcome and participant introductions

2

Limitations and struggles

3

Dealing with stress

4

Recurrence anxiety and what you can do to decrease it

5

Emotional growth

6

Getting past the anger

7

Help your doctor learn from you

8

Changed perspectives

9

Looking at the funny side

10

The will to live

11

Role of spirituality in survivorship


Susan Mary Louise
Susan
Mary
Louise

Welcome and Participant Introductions: Dr. Harpham, Susan, Mary, Louise

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Dr. Harpham: Hello, and welcome to American Cancer Society's Cancer Survivors Network. I'm Dr. Wendy Harpham, your host. Today we'll be talking with three women from across the country, all between 35 and 46 years old, who have experienced or are now experiencing, a recurrence of lymphoma or leukemia. As a doctor of internal medicine, and also a ten-year lymphoma survivor myself, I'm ready to have a great conversation with these women. First, let me introduce briefly our guests. And then I'll open up the discussion as we talk about issues such as: keeping your energy up during and after treatment, dealing with fear of recurrence, long-term or permanent side effects of treatment, how your emotional responses to life situations change over time, the role of will power in healing, and the role of humor in healing. Our first guest is Susan, a 42-year-old woman from Dallas, Texas, who went in for gall bladder surgery in 1992, and was discovered to have Non-Hodgkin's lymphoma. She was married and had a two-year-old daughter and a five-year-old son at home at the time.

SusanSusan was treated with CHOP chemotherapy and her lymphoma went into remission. Three years later, in 1995, she had her first recurrence, which was treated with a different chemotherapy, Fluderabine. She then went into four years of remission. In 1999, her cancer returned, and she was treated with Rutoxin, the new monoclonal antibody, but it didn't work well enough, so her lymphoma has been kept under control with low dose oral chemotherapy, Leukeran . Susan, thanks for joining our show today.

Susan: Thank you. Glad to be here.

MaryDr. Harpham: Our second guest is Mary. Mary is also from Dallas, and is now forty years old and the mother of an 11-year-old boy and 8-year-old girl. In 1994, after months of unexplained itching and multiple misdiagnoses a chest x-ray was done and revealed a mass which biopsy showed was Hodgkin's lymphoma. Mary underwent six months of radiation and chemotherapy, at the end of which her cancer was in remission. She had an uneventful recovery and was doing well, when in 1997 at a routine checkup, she was discovered to have recurrent disease. She then underwent stem cell transplant and has been in remission since. Mary, I'm looking forward to hearing what you have to say about today's topics. Welcome to the show.

Mary: Thank you, Wendy.

LouiseDr. Harpham: Louise is our third guest. Louise is a 13-year survivor of AML leukemia. In 1987 she was just 33 years old, and suffering from repeated infections and some bone pain. Despite multiple doctor reviewuations, her leukemia was not discovered for many months until a bone marrow biopsy was done and the leukemia was discovered. She was treated with chemotherapy, during which she had to have her gall bladder removed. In 1988, after a short remission, she had a recurrence and was treated with a bone marrow transplant. Louise's course was complicated by infection, such as CMV pneumonia. Back then, this complication was usually fatal, but Louise received what was then experimental antiviral therapy and she pulled through. This therapy is now part of the standard treatment for stem cell transplant patients. Although her leukemia has stayed in remission since, Louise has had to tackle many medical problems related to her treatment: shingles, a mini-stroke, osteoporosis, diabetes and cataracts. One year ago, she had to have a lung transplant because of treatment-related lung disease. It's been a long hall. We really appreciate Louise taking the time and energy to join us today and share her insights and experiences. Welcome, Louise.

Louise: Thank you. It's wonderful to be here.

Limitations and struggles

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Dr. Harpham: Well, let's start with you, Louise. With all your illness and your debilitating treatments, I'm sure you've had to deal with energy limitations. Can you share with us how you handled the change in energy, what you've done to try to keep your energy up at various times?

LouiseLouise: Yes. On the day that I really felt the worst were the days that I tried to push myself a little harder, and always made sure that I would get up and get out of bed and get active, even if it for that day it was doing laundry. That was my activity for the day, and I always took a positive attitude, and knew that every day was going to be better and better. And I would try, I did some walking, I did some actually took physical therapy at a rehab hospital in order to get prepared for my lung transplant, and that helped a great deal. I did a lot of walking, even pulling my oxygen tank, that kept me going and I was very active and productive in the Leukemia Society and I would look forward to different functions and stay involved and attend meetings...

Dr. Harpham: Did people ever make you worry that you were doing too much?

Louise: No, in fact I was always encouraged to do as much as I could. The only time they ever told me to be careful was around flu season, not to go to crowded malls, or if I was going to go to a theater or shopping, try to go at off peak times when there were not a lot of people around..

Dr. Harpham: But that was more an issue of catching an infection as opposed to pushing yourself too hard energy wise...

Louise: There were a couple of times when family members said, you've got to slow down, you can't be doing all this. And I just said, I'm gonna do whatever I can do as long as I can do it.

Dr. Harpham: So being busy and staying as active as possible was very positive for you in terms of your energy.

Louise: Exactly. And it made me feel very vital and like I was in control and as long as I was able to control my physical being, then I could keep the disease away. I mean I had a lot of affirmations with positive thinking and visualization of a healthy Louise, and I always kept that in mind. I'm not always gonna be like this, there's gonna be a day when I am gonna be better, and I'm gonna work towards that every day.

Dr. Harpham: And that's something we're going to go into in more detail later on. Mary, you've had chemo, radiation and a transplant, and you have two young children. You also have a job. Can you share with us how energy has played into your survivorship?

MaryMary: Well, I feel like I've been pretty lucky overall but it has been an ongoing struggle to kind of figure out a way to balance, like Louise said, the vitality you get from staying busy and being engaged in life and at the same time, not overdoing it. And I've sort of been, I've had to tinker with things for a couple of years. I really didn't feel like I got my energy back for a good two and a half or three years after the stem cell transplant and I did different things, I tried to be very careful about drinking water every day. That's sort of a small thing but it can make a big difference. I'm very careful about getting my sleep, I uh...

Dr. Harpham: Did your sleep requirements change after your transplant?

Mary: Yes. Although, it's been pretty manageable, I really must have eight hours every night, and I used to be able to get by on five or seven. And now seven hours feels like two. But as long as I get my eight hours, I'm really pretty energetic most of the day, able to exercise, able to do my routine and keep up with my work, but come nine or ten o'clock, I don't work anymore, even if I have a deadline. I just go to bed.

Dr. Harpham: So you draw limits?

Mary: Yeah, I have to draw limits.

Dr. Harpham: You drink a lot of fluids but you draw limits and make sure you get the sleep that you need. Do you think your energy is continuing to change?

Mary: Yes, it seems like just six months ago it took a big jump,. And I'm not really sure why. Maybe some dietary changes. I do a little changeup of my hormone therapy. So you know, maybe some combination. Maybe I had just reached the point where I was recovered enough that it was better. But...

Dr. Harpham: Which brings up the point that many different things contribute to energy? And even though you've had a transplant, you could say, well, I'm gonna be tired because I've had a transplant. Looking at other things such as your hormone balance and all, and taking care of things that can be effective, may be helping your energy.

Mary: You know, I actually went so far as to keep an energy diary for a few months. I kept a diary of everything I ate, how much I slept, when I took my medications, I mean, everything I could think of; whether I exercised, how much water I drank. I tried to keep track of everything I could think of that could possibly affect my energy.

Dr. Harpham: And what did you learn from your diary?

Mary: Water. Water was a BIG thing.

Dr. Harpham: When you had enough fluids it really helped.

Mary: Yes. And it was not like I was not ever drinking, but if I didn't get that good six to eight glasses a day, it just really made a big difference. I was surprised.

Dr. Harpham: Did you deal at all with other people telling you to take it easy, slow down when you were trying to do things?

Mary: You know, I grew up in a family that thinks you were given a certain amount of energy when you were born and once you use it up, you die. So, (laughing) I got a lot of that from my parents, and even now I exercise really regularly and they say, You're gonna die! You're pushing yourself too hard, you're sweating! Oh, my gosh! So yeah, I dealt with that, but not too much in my immediate family.

Dr. Harpham: How did you deal with that personally, though? Did you just blow it off, you didn't worry about it, or did it make you nervous at all that maybe you were pushing yourself too much?

Mary: Well, you know, I've gone back and forth. Sometimes I've felt that maybe I was pushing myself too much, but I've also had days when I've thought, you know, I'm really cutting myself too much slack! I'm not afraid to do that.

Dr. Harpham: No vacuuming, right?

Mary: Well, not even so much that, the other thing actually I get really, I'm very sort of anal about it, I don't let myself get stressed out. Cause I feel like being tired physically at the end of the day is not nearly as hard on my body as being tense all day. So, and I don't let things bother me, and people have commented on that. They say, Wow, you're really calm. You know, the deadline is coming or something's going wrong with a project at work, and you know I say, Hey, look, nobody's gonna die! Nobody's gonna lose their job. Put it in perspective.

Dealing with stress

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Dr. Harpham: So it's not even the physical energy demands so much as the emotional and practical stresses. And you've actually relearned how to deal with those things since your cancer diagnosis.

MaryMary: Yes. Yes. Cause I really feel like it's very rare that I physically wear myself out. And that's one way I've been lucky. I mean, I have a pretty good amount, especially now, of physical energy, but I just, you can get tired really quickly when you're anxious over something or..

Dr. Harpham: How DO you combat stress?

Mary: Well, I've cut back. I don't do nearly as much as I used to. I'm very, very protective of my time and if something looks like a waste of time, I just get away from it really quickly. So mostly I make sure I do things that nourish me, and I have some freedom financially, I don't absolutely have to work full time by any means, so that's been a real luxury, I've been really lucky in that way.

Dr. Harpham: What about, I mean, you have two kids at home. I know they're perfect, but...

Mary: Laughs raucously.

Dr. Harpham: But when you're having trouble with the kids. Or when something comes up. I mean, cars break, and faucets leak. What do you do with those unavoidable stresses?'

Mary: Well, I do tend to get angry and frustrated by I kind of, you know I just let it blow off.

Dr. Harpham: Meaning you express it and let it go?

Mary: Yeah, let it go. And I feel like dealing with my kids is what I want to do. It's not like, How did I get myself in this situation where I'm dealing with the stress and I didn't even want this job, or I didn't want to be on this committee or that kind of situation, so I really feel committed to the work with my kids, so that takes a lot of the stress out of it right there.

Dr. Harpham: I understand. Excellent. Susan, you've been on chemo the past year, and I'm guessing it's affected your energy to some degree. Can you share with us a little bit about your experiences with fatigue and cancer therapy?

SusanSusan: Well, I think I've been pretty lucky. There have been times, certainly where I go do, times I have less energy than others, but most times I do feel I have pretty good energy. But like Mary, I really do try to take care of myself. I exercise also, I take vitamins, I try to eat right and I try to get at least eight hours sleep. And that helps, too. I'm gonna add the water to my curriculum and see if that helps, too.

Dr. Harpham: Now the vitamins. Did you just do that on your own or under your doctor's supervision?

Susan: Well, a lot of reading, and then I would check with my doctor and make sure I wasn't doing anything that would be detrimental.

Dr. Harpham: Good. So you really kept your doctor informed of everything you were doing.

Susan: Yes. Usually, though, they'd just say, yeah, fine. I mean, neither doctor that I've had encouraged me to take certain kinds of vitamins, but I would read through books, cancer books and stuff, which vitamins would be beneficial and just ask him, is this okay? And they always said, sure that's fine. So. I wish sometimes that they were more nutrition oriented, nobody's given me, oh, you need to do this, or, unfortunately I haven't had that, but they say, if you want to take those, that's great. So, to me, I feel like it has helped me. I think vitamins have made a difference.

Dr. Harpham: I want to go back to Mary. You know, we talked about controlling stresses, and one stress that cancer survivors deal with is checkup anxiety. Most every cancer survivor has at least some degree of checkup anxiety, namely, fear or worry in the days or weeks preceding a checkup, that are generated by the possibility that something may be found. And for you this is a real possibility, because you've had that experience. Why don't you tell us about your fear of recurrence after your first bout of cancer and then after being treated for your recurrence, which was picked up at a routine checkup?

MaryMary: Well, I actually find the recurrence anxiety is worse, now, because with Hodgkin's you have such a high cure rate and we did go after it quite aggressively the first time, so I really thought I was probably cured. And so I'm more anxious now about checkups, although, as time goes on, it's been three years that I've been in remission, as time goes on it gets a little bit less every time.

Dr. Harpham: When it was at its worst, what was it like. Meaning, can you describe for us what checkup anxiety feels like? What it made you do or think or feel, how it makes you different than when you don't have it.

Mary: One thing I notice some funny things that happen. I'll get angry about something totally unrelated. and I'll get unreasonably angry and I notice I've fired three or four sort of baby sitter type helpers all at checkup times, and something went wrong. There was always sort of an explanation, but I just noticed this pattern and I felt normally I would have just dealt with the problem. It's almost like its negative energy that just has to come out somewhere, comes out in unexpected places.

Dr. Harpham: Do you have any other symptoms? Either...

Mary: Well, you know, itching was my main symptoms, and if you think about itching, you're gonna itch. Oh, it's a very mental sort of symptoms. So I tell people I wish I would do something much more obvious, like break down in green spots because the itching, you know, your skin gets dry or you can itch for any number of reasons, and I've always had sensitive skin.

Dr. Harpham: Have you had any checkups when you've been itching and the checkups turned out fine?

Mary: I itch before every checkup. I literally do. My skin gets itchy. It's just, it's like, if I'm not waiting for a checkup, if I get itchy, I don't even notice it.

Dr. Harpham: So since you've had the experience of itching but also having a good checkup, does the itching cause less fear now than it did before?

Mary: Well, it's almost like, no, I guess it's kind of like it sit there and listen to it almost and go is this Hodgkin's itching or is this dry skin itching? Or some other form of itching. So, no I mean, yes, the fear in general has lessened, but I'm itching right now! Let's move on. (laughs)

Dr. Harpham: What about changing your sleep before checkups.

Mary: I sleep. I sleep every night. I do not lose sleep over it. It's amazing. I just. I literally say, I'm gonna worry about that when I get to the office. And I walk in the office and cold sweat and shaking and my heart rate's always really high.

Recurrence anxiety and what you can do to decrease it

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Dr. Harpham: Is there anything that makes it worse? Meaning the anxiety before a checkup? Is there anything that you have found if you do or hear or see it tends seems to make it worse, and also are there any specific tricks that help you get through it?

MaryMary: Well, I noticed I'm almost superstitious. Like, one of my big stresses was my two year checkup and the reason was because my recurrence showed up two years after the first treatment. So I had a little story in my head which was it takes two years for my cancer to grow big enough to be seen. So I just have. You know, it's like, I won't wear the dress that I wore, I just have all these

Dr. Harpham: Sort of magical things, superstitious...

Mary: Yeah. And you know I kind of recognize them for that, but they just keep coming up. I guess that's the way human beings are wired.

Dr. Harpham: Well, I think it's partly wanting to have control. If you had your recurrence wearing the pink dress, then if you don't wear the pink dress, it feels like it decreases the chance of having another recurrence. Which you know rationally there's no relation to at all between pink dresses and recurrent Hodgkin's.

Mary: Exactly. But it's just you know, ball players all have these things. It works!

Dr. Harpham: Susan, how about fear of recurrence in your survivorship?

SusanSusan: Oh, I really do experience that. I get very nervous. Like you're heart's pounding, and it's like waiting for a death sentence or something. I mean, just waiting to hear if you've got another three or four months of just, yeah go, or you've got to deal with it all over again. Once I leave an office with a good report, then I'm fine until a couple weeks before, and then it just hits this quick decline of anxiety until I go back again. I do think thought, after, I worried about it more after I got the very first remission, and now that I've dealt with the recurrence and survived, and we got back in remission, I think it was easier for me to deal with now. I mean, I still get very anxious but I'm not as anxious as then...

Dr. Harpham: So it was actually worse before you ever had a recurrence?

Susan: Well, I lived in so..

Dr. Harpham: So you survived a recurrence and you see that it is not a death sentence, it's just another illness.

Susan: Exactly. Almost like a chronic disease, sometimes you're gonna be dealing with it and other times not. You know, that's just the roller coaster ride of life with cancer.

Dr. Harpham: What about you, Louise? As you've dealt with all your ongoing medical problems, which many patients consider reminders of their disease, how does fear of recurrence affect your days, if at all?

LouiseLouise: Well, actually I did just have a scare in September, my lymphocytes kept coming back abnormally high and we had three options, rejection of the lung; relapse of the leukemia, or an infection of unknown origin. And I had to have my first bone marrow biopsy in six or seven years, and that really got me anxious again, because I hadn't had one in so long.

Dr. Harpham: So what sort of things were you thinking or feeling when you knew you needed that bone marrow biopsy?

Louise: I thought, if the leukemia is back I don't think I have the will in me any longer to go through chemotherapy again. After going through the chemo, the bone marrow transplant, the C&D pneumonia, the lung transplant, and all the chronic problems. I just thought, you know, I think I might really have to toss in my chips this time. I just don't know where I would find that will to fight again, and I hoped that my spirit would come out, that I would be able to face the challenge. Fortunately, there were no lymphs or no blasts or anything in the cells and everything looked fine and the lung was fine and it turned out I had pneumonia. But that fear, and when I get that fear, I clam up and I will not discuss it with anyone, I won't tell any members of my family, I won't discuss it with anyone until it's just right down to the last minute.

Dr. Harpham: Tell us why.

Louise: I think I'm more afraid for them having to go through it again as well. Because it's been thirteen years that we've been dealing with this for thirteen years. And I just thought, Jeez, I don't want to put them through it again either. I think, one of my sisters was my bone marrow donor and she's been basically my primary caregiver, my parents are both deceased, and it's just been real tough. I've always felt like I almost had to deal with this whole thing by myself as it was, not having parents, and having family members that worked or lived out of the city that weren't here, and most of the time I was driving myself to my doctor appointments.

Dr. Harpham: Cancer is very inconvenient, isn't it?

Louise: It IS, inconvenient. And I'm so independent because of that that I don't want anybody else of course to be a burden on them.

Emotional growth

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Dr. Harpham: So you were thinking about all these things when you had that scare. Now, was your sleep affected?

LouiseLouise: Yes, it was, until I had the bone marrow operation and the bronchoscopy.

Dr. Harpham: How long a wait was there between your getting the hint that something might be wrong that you might have recurrent disease and your actual test that showed you did not?

Louise: It was about three weeks. I started having a real bad cough the beginning of September and kept on coughing. And I couldn't quite, but my lung x-ray was clear, they couldn't figure out where the cough was coming from, and then that was when the leukocytes were showing 53% and they said, well we think if might be rejection of the lung. That was the first thing, I thought, Oh, NO, after it had been a year everything would have been fine and then they said, well, of course, it could be your leukemia coming back. Of course that would be even worse. And then I had the bone marrow biopsy on Wednesday and had the bronchoscopy on a Friday and both came back negative. So then on Sunday I was in the hospital with pneumonia.

Dr. Harpham: How did getting the good news affect you?

Louise: Oh, it can just make you do an about face so quickly. It's just amazing what one little ounce of good news you just grasp onto it and it just elates you. And I got all positive attitude again, and I think okay, that's not so bad, just a small little bump in the road, ..

Dr. Harpham: How did you feel about the fact that you'd been so scared, or had all those thoughts about, what would I do, and I couldn't do it again.

Louise: I thought, How silly of me to act like that. I mean, I've got to keep this positive attitude. But then I think, "Gosh! You're human." You're allowed to kind of get some dark thoughts every once in awhile, because I've been so positive throughout the whole treatment. I mean, even when I was on a respirator with C and V pneumonia with both lungs whited out, my doctor standing over me, telling me, You're going to be okay. I believed him. And nobody had ever survived C and V pneumonia before on a respirator. And I just shook my head and said okay, and, and, I lived. And got that "you're gonna be okay" attitude around my illness.

And when I was on the operating table with my lung transplant, at one point I woke up during surgery, right after surgery and heard the doctors say, "She's crashing. Her blood pressure is over forty." And I literally felt the life going out of me. And I heard him say, "Give her some dopamine" and they did and it was kind of like being plugged back in again. I've relayed that story to my doctors three days after surgery and they said, "who told you that?" And I said, "No, I was awake. I woke up. I heard that and I felt that, and I thought I was going to die, and I came back. And I thought, I keep thinking all this time, "I'm gonna stay" I'm supposed to be here. I'm going to make it. I'm gonna beat whatever comes my way.

Dr. Harpham: You told us about having negative type thoughts but you kept them to yourself. After you got the good news, did you ever share what you'd been thinking or feeling with your family or your close friends?

Louise: Yes I did. Afterwards. Usually after the fact I can talk about it but beforehand it's just something I always just keep to myself and then I'll tell them, boy, that was a pretty good challenge there, I wasn't sure which way it was gonna go. And eventually right like the day before the bone marrow biopsy I told everybody just to keep me in their prayers, it was a big day and I needed a lot of positive thoughts and it seemed to work.

Dr. Harpham: Well, though you are not dealing with cancer right now, you are dealing with the challenge of chronic and late effects of cancer treatment. And chronic effects are medical problems that persist, they continue after completion of treatment, and late effects are medical problems or changes that first occur months or years following completion of treatment. Can you share with us about dealing with your, how it's been to deal with chronic after effects of your treatment?

Louise: Well, my sister, who was my bone marrow donor, she tells me since I'm usually at the medical center, at least once a week or you know, two or three times a month for sure. She tells me, you know, that's your job, it is your job to stay well, and that's really kind of how I deal with it. I mean it's a daily routine, it's taking care of yourself, making sure you take your meds. I have three huge pill-boxes that I have to sort my twenty odd pills that I take three times a day. Remember to take them and which pills go at what time. And it's a job, you really have to stay alert and mentally focused on the various things that can go wrong, the various meds that they give you. Because they change quite often especially with the solid organ transplant, getting the right amounts adjusted, the anti rejection drugs--I've been on three different anti rejection drugs in a year. And getting that fine tuned is a big ordeal.

Dr. Harpham: Can you share with us some of the emotions you have felt about dealing with these other non -cancer medical problems? Some survivors feel angry. I mean I had to deal with cancer and now I have to deal with diabetes or and other people feel overwhelmed, other people feel a tremendous sense of it being unfair, or just having to keep pulling it up and doing more. Other people want to escape the patient role, and though they're not a cancer patient, if you're going to doctors for diabetes or minor surgeries or whatever it is, you can't escape the patient role. I would like to hear more about the emotions that have accompanied this series of medical complications and chronic problems that you've faced.

Louise: Well, it's a big thing to face. I know that when I first started having the breathing problems, I was very upset about that because I had two good years after my bone marrow transplant of feeling wonderful, feeling very healthy and active and then just one day woke up and couldn't breathe. And that was alarming to me, it was very frightening because I didn't know what was going on and what was changing and why my lungs were like that.

Dr. Harpham: How did you feel when you found out you had a really serious medical problem and it was related to your cancer treatment? This lifesaving treatment gave you a new medical problem.

Louise: I know. Actually I was pretty angry about that and I was pretty angry about the fact that basically the doctors know that this is gonna happen somewhere down the line and they kind of leave that part out when they're telling you about a bone marrow transplant. They know that you're gonna have graft vs. host disease 75% of the time and they kind of left that part out. I think that's what bothered me more was the fact that my sister that was my donor was more upset, because she said the one thing that I thought I was doing to save her life, is now killing her. And she felt a lot more guilt about that than I was angry. I mean, I wasn't angry at her. I was just angry that this was something I was gonna have to deal with forever.

Getting past the anger

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Dr. Harpham: What got you through that anger, and how did you help your sister? Who helped your sister?

Louise: Well, I always hope that I helped her because I said, Sue, if you hadn't given me the bone marrow transplant, the bone marrow, then I wouldn't be here to gripe about it.

Dr. Harpham: Exactly.

LouiseLouise: So we dealt with it with a lot of humor and love and compassion, and just the fact that I told her I would do anything to keep going. If I had to have the lung transplant, I will. And now there's a possibility I may have to have a kidney transplant. And she's already stepping up to the plate and saying, Okay, I'll be your donor! So, I mean, it's just something that every day I have to deal with. It's something I don't like, I don't like sticking my finger every day to check my blood and I don't like giving myself insulin shots, and but I don't want to suffer the consequences, either. And knowing what the outcome could be if I didn't take care of myself, that far outweighs what I have to go through. And yet I still keep an active life going. One of my friends told me I could be the poster babe for just about every disease there is no. Leukemia, diabetes, osteoporosis, lung transplant, pick a day, pick a calendar, I could be it.

Dr. Harpham: You sound as vibrant as anybody I've ever spoken with.

Louise: Like tomorrow night I have a meeting with the Leukemia Society for a concert that we're doing in January and looking forward to that, in fact, I'm calling them saying, we haven't had enough meetings lately, what's going on? Let's get going.

Dr. Harpham: So illness does not define you, it's just part of your life.

Louise: It is. It's just secondary to my life. You know, I'm gonna live my life first and do as much as I can. I've got weddings to attend, I've got babies to see born, I've got children graduating, nieces and nephews and I just have...

Dr. Harpham: So you give the illnesses their very proper attention, but you work them in with your life so they don't define you. Mary, what about after effects or chronic effects for you? Have you had any chronic problems related to your cancer therapies?

MaryMary: Really pretty minor ones, and I, listening to Louise's story, I really admire her courage.... because I get angry about relatively minor things.

Dr. Harpham: You've had asthma at some point.

Mary: Yes and it's been pretty mild. In fact I've not even thought about it for the last six months or so, and it hasn't really slowed me down. It doesn't seem to be set off by exercise, it seems to be just allergy related or if I get a cold, so that's been pretty minor to deal with. I went in, the stem cell put me into early menopause, so I have to take medication for that, but I mean, really...

Dr. Harpham: How did you feel about that?

Mary: Well, I wasn't really seriously planning on additional children, so it wasn't a huge thing. But it does sometimes just make me feel like, I kind of got aged about ten years in the course of one month, and I've put on some weight and you always wonder, well, do I have a 50-year-old metabolism instead of a 40-year-old metabolism, but you know, ...

LouiseLouise: Mary, can I add something to that? Because I was 34 when I went through my bone marrow transplant, and actually at the time they were giving me a choice of whether to do more chemotherapy or do a bone marrow transplant, which was still pretty much experimental in 88, and very risky to begin with. But the total body radiation, I knew I was not going to be able to have children. And that was one of the reasons why it took me, I was relapsed in June, it took me until August to make up my mind what I was gonna do, because of the very fact that I couldn't have children. And my doctor and I were talking about it and he was asking me, Why are you having such a tough time making this decision? And I said, Because I can't have children. And he said, Well, what does that have to do with it? And I said, Well, I'm in mourning. I'm mourning for the Louise that I'll never know, as a mother or a grandmother, and that's such a difficult thing to go through and I just can't picture myself not having children. And that was, THAT was the toughest thing, after my relapse.

Dr. Harpham: To whom did you turn for help to deal with that powerful mourning?

Louise: I kept it in. Unfortunately, I kept a lot of that in, and I didn't talk about it.

Dr. Harpham: It's a very hard, hard loss. Even if rationally you know it's the best choice for you. It's a very painful, hard loss for a lot of people.

Louise: That was one of the hardest decisions I made, was having to give that up.

Dr. Harpham: Did you ever talk to your physician about it?

Louise: I did. He of course being male, said, that never occurred to me. I never thought of it in those terms. So I hope he does now to his other patients seeing how devastating this is to a young woman of childbearing age that wanted to have children.

Help your doctor learn from you

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Dr. Harpham: Which brings us to the idea that when you share with your physicians, you hopefully change how your physicians deal with their other patients.

LouiseLouise: That's what I have always hoped.

Dr. Harpham: That patients are physicians' teachers?

Louise: Yes.

Dr. Harpham: Susan, what about you? Have you dealt with any chronic problems or late effects of your treatment.

SusanSusan: I haven't had to deal with too many of those. It did change what Louise was saying the childbearing. We had planned on three children and my youngest was two. When I was diagnosed, that changed the plans. Not that I, the chemo that I did not put me into menopause but just health issues. Pregnancy was hard on me and I just felt like it wouldn't be a good choice all the way around to put myself through that. But you do mourn that loss, because it changes your whole family image. And it was hard to deal with. But health-wise, sure there've been times when I have less energy than others, but I seem to bounce back. You know, being 42, it seems like I've got plenty of energy, but I know I don't have near what I had in my thirties. So it's hard to tell whether it's cancer-related lack of energy of if it's just being in your forties.

Dr. Harpham: And that's often a problem for patients. Is this related to my treatment, or would this have happened anyway?

Dr. Harpham: I'm gonna shift gears just a little bit, and talk about something that Mary touched on a bit ago, and that was changes in your reactions to life situations as a result of having gone through the cancer experience. Many patients find cancer a life-altering experience, reshaping how they see their world, changing how they feel about every day events. Susan, can you describe for you some ways in which your outlook or your approach to life, your philosophies of life, have changed as a result of going through cancer?

Susan: Oh I think that they have changed immensely. You know we were talking about stresses earlier. I really, of course I get stressed out. But the things that cause me to get stressed out have to be really large. Just because I seem to, I really enjoy each day and I'm grateful for each day and I'm so glad I'm here for my kids, and that's just been my wish through this whole thing. They were so young, just to be here to raise my kids. And I'm so grateful that I've seen the advances they've been through and the changes they've made and now they're 13 and 10, and it's been wonderful. And also, just, I've had so many things...My religion has, my religious beliefs have really increased. Just things that have happened to me that just seemed like God was speaking directly to me. And I do feel like things are going to be okay and that he's there with me, and that has been remarkable for me.

Dr. Harpham: So your faith has strengthened?

Susan: Very much so.

Changed perspectives

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Dr. Harpham: Going back to the practical things. Do you deal any differently with people who are rude or just everyday frustrations like we mentioned, the faucet leaking, or a flat tire? Have any of those every day frustrations changed in your life?

SusanSusan: Again, I do get frustrated. But it takes more to set me off I think than before dealing with cancer. And people that are rude are something I try to be nicer to them, because who knows what they're going through? They may have a checkup in a week for their cancer, you know, to find out how they're doing. So I give people more the benefit of the doubt, I think.

Dr. Harpham: Has it changed how you feel about money?

Susan: Well, it just doesn't mean as much, I would say. I don't think any of the material possessions mean as much as your health. I mean you've always heard that, if you have your health, you have everything, and you really don't understand that until your health is threatened.

Dr. Harpham: It's amazing how many of those corny sayings sound different after you've been sick.

What about your relationships with your family members? Or friends?

Susan: Oh I think it brought my family and my friends much closer. Here's the amazing thing. I had so many friends that were so just there for me in so many ways, but to me it was incredible. The people that I just sort of knew on the outskirts, didn't really know that well, that stepped up and were just amazing people and that through cancer I got to know them. And I might not ever have had that opportunity if this wouldn't have happened. But it's always so amazing when someone you just barely know, or a friend of a friend, comes and does something incredible for you, just because they heard you were sick and needed help. And that to me was very uplifting. And I had a lot of instances like that that really meant a lot to me.

Dr. Harpham: Mary, how has your outlook or approach to life changed?

MaryMary: You know when I was in the hospital with the stem cell, I remember going through a magazine and finding a picture of a family eating spaghetti at a table and I just cried over that picture. I just wanted to enjoy my family life, just kind of a normal, every day family life, and I missed that when I was in the hospital. I think I was kind of more ambitious, frankly, and all that ambition seemed kind of useless up against the thought of not being there for my kids. So I think I simplified my life and just focused more on my family because there's nothing I can do or accomplish career wise that would really be the least bit significant against the possibility of not being with the kids.

Dr. Harpham: What about the daily frustrations of life? Has that changed or has your sense of time changed? Do you feel like time is moving faster or slower?

Mary: I feel like I take time every day to just really appreciate just being here and being, you know, every day I sit down and do my prayers and write out my thanks, and every day I write: Thank you for another day of feeling good. I'm so grateful for just that. Which is something that I of course like everybody else, just took for granted before I got sick. So..

Dr. Harpham: You actually went and made a thank you journal.

Mary: Well, I have a sort of a little prayer notebook and it has a section for thanks.

Dr. Harpham: When did you start that, Mary?

Mary: Probably about a year and a half ago. And I've just really begun to appreciate how important it is to be grateful. When I was sick one of the things I was grateful for were the people that kind of like what Susan said that came out of, not out of nowhere, the people you didn't necessarily know, and even your doctors. I mean it occurred to me one day that you know, here I have this disease and here's somebody two miles from my house who has spent his life preparing to treat someone with this disease. And I just feel so grateful.

Dr. Harpham: Louise, how about you?

LouiseLouise: Well, I always was an upbeat person and very positive in all my daily life. So when I got my very first diagnosis and my sister was Sue was with me and she said, Lou, do you think you're gonna be okay? No, she said, Do you think you're gonna die? And I said, No, I don't think I'm gonna die. I think it's gonna be tough, but I think I'm gonna get through it. And that was basically day one of diagnosis and I kept that attitude the whole time. And as far as everyday stresses, they just don't seem to matter any more. People that are rude, I won't be rude to them, I'll be just as nice, just as Susan said. I'll go out of my way to be even nicer. You don't know what their problem is. And I used to have this wonderful, glorious, natural curly thick hair, and of course, I've got this straight mess now that I'm cursed with, and I remember once seeing a young woman walking down the street with very, very short hair and thinking, Oh, that poor thing. Gollee, uck, why would anybody wear their hair that short?

And inwardly said that, and then of course, that was me a few years later. And being grateful for that very short hair! So everybody's got their own story, and everybody has their own little world that they live in. And sometimes you might be a part of it and I'll let them have their space and I'll be just as kind to a stranger, because you never know when you might be entertaining an angel.

MaryMary: If I could jump in Wendy, kind of echoing what Louise just said. I had a chat group that I was part of that, cancer survivors. And I got involved with this chat group in 94, and that was about when the Internet was really getting popular. And I would also just sort of tool around and look at some of the other chat groups, and I just found a lot of the chat groups, and I hate to make generalizations, but you've got a lot of, people are sort of, oh what are you doing? Oh, not much. You know, kind of bored, cynical, angry, cause who knows, fighting over things, and I just found that the chat group for the cancer survivors was the most upbeat, happy, engaged group. I thought there was a lesson here.

Looking at the funny side

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Dr. Harpham: And actually that would lead me right into what I wanted to bring up, which is that anyone with or without cancer deals with frustrations and setbacks and complications in life, and one tool that many people use is humor. And I'd like to talk about how humor helps people get through the cancer experience. Mary, you brought it up. You said that humor on the Internet was really most striking in the cancer groups as opposed to the non-cancer groups.

MaryMary: Yes. Well, it's hard to, I'm not sure how to shed any light onto it other than I think it gets back to the fact that you are so grateful for what you have just for this day, then you want to put whatever energy or humor you can in it, to make it more enjoyable. One of the stories I tell people is, my cousin went through breast cancer and did a stem cell transplant a couple of years before I did, and right before I went into the hospital, I called her and I said, Pat, tell me exactly what this involves. Just tell me the words and help me to like kind of mentally prepare for this. And we talked for about two hours, and we laughed the entire time! I'm not really sure I can recreate it and explain why, other than Pat is a funny person, and the way she retold all of her experiences, you know, a lot of potty humor about the diarrhea she had to deal with. Like I said, I don't know if I can, you had to be there. But it was one of the funniest conversations I ever had in my life.

Dr. Harpham: Why do you think it was so helpful to her and to you?

Mary: Because,

Dr. Harpham: Well, laughing which feels great.

Mary: I think there's a sense of power, which is, if you can laugh about something, it can't quite overtake you. You know, you're always a step ahead if you're still laughing. That's what we did. I can't think of a more gruesome subject and we were laughing our heads off.

Dr. Harpham: And Susan, I understand you had some pretty funny situations arise during otherwise grim times yourself.

SusanSusan: Yeah, definitely. And I think that Mary's right. If you can laugh about it. And they say laughter releases endorphins and I did try to keep a sense of humor about it. But I mean probably Wendy you're thinking of a story I told when they called about the interview, that my wig. You know I got my wig and within a couple weeks had a friend over for dinner. And I had my wig on and you feel self conscious anyway with that on and I was reaching into the oven to get out the casserole or something, and my synthetic wig, the bangs just ZIP! And went all the way up to the top of my head and they just melted! So I had no bangs. I had to get through the rest of the night with this no bangs, fringed, singed bangs. It was so funny.

Dr. Harpham: Did you have a camera?

Susan: You know, we did not get a picture. But I laughed about it then sort of, but then we laughed so hard. My mother was in town and we laugh about it now so much. You know, the doorbell rings and you run and take your turban off and put your wig on and answer the door. I mean you can't help but see the humor in some of the instances that you have to go through.

Dr. Harpham: And it also lightens up your memories. Your memories of very difficult times are not pure hardship and suffering, but they have these funny interludes.

Susan: And well, probably the funny times, when I think back of the wig and all that, it's more the funny times that come out of my mind than the worst times.

Dr. Harpham: Louise, what about you? How did humor play into your survivorship?

LouiseLouise: Oh, big time with humor. In fact, I majored in drama when I was in college and have a lot of good acting buddies that I still hang around with. And one particular girl that I went to school with I think is just, she never went into professional acting but she should have, she's just the funniest person I know. And I would call her to come up and visit me on day before I was gonna have a bone marrow aspiration. And knowing that I had to have good blood counts and wanted to get my white blood cells up, and I knew that laughing was the best exercise I could do, and she'd come up and spend a couple hours with me and we would literally laugh the entire time! And I probably couldn't even tell you what we laughed about but I've chosen to always see the humor in things rather than the negative in things. And even think sometimes when you have this great, nasty stuff, and would want to puke and you couldn't, to me that was funny. And any other kind of... I remember one time I was so sick that I couldn't get up and go to the bathroom. And one of my doctors was in the room and I said, I really need to go to the bathroom, and he said, well, what do you want me to do about it? And I said, well, do you think you could help me? And he says, Well, okay. And so he helped me and I said, I think I'm gonna faint, he goes, Aah! What do I do now?

I said, My lord, you don't know? Then what are we gonna do? So I just choose to see the lighter side, and the funny side and I've had, when I had my graft vs. host disease and I was just red all over and bald headed as could be, I didn't wear a wig, and I got some pretty funny looks, though.

Dr. Harpham: So it's really okay to share the humor and share this side of what's happening with you with your caregivers?

Louise: right. You can always share the humorous side, but the dark side I kind of chose to keep to myself.

The will to live

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Dr. Harpham: Well, humor obviously has been an important element for all of you.

Another element in healing that's difficult to quantitate is will power, the will to live. The will to overcome challenge. As a doctor myself I see patients with terrible medical conditions, they seem to will themselves better, or at least, they seem to live longer than expected. What do you think this is all about? How do you see will power playing into your survivorship. Louise, you've mentioned that you had a near death experience. I've seen patients who seem to will themselves better or at least to live longer than expected. What is this about? How do you see will power playing into your survivorship? Louise, you once had a near death experience you shared with us and the doctors more than once did not expect you to live. How do you think willpower played into your beating the odds?

LouiseLouise: Well, one of the things that I did was a lot of affirmation and I've always had a good positive attitude, but a lot of imagining that I was going to be well, imagery played a good part. One of the things that I did was I made my white blood cells killer, great while killer sharks, and would line them up at the top of my head and tell them to go attack. I'd seen a slide of what leukemia cells looked like and they were purple. And I would tell them, go attack anything purple in my body. And I just kept that will to live, I had at the time, my oldest niece was 13 years old and when I heard her voice on the phone, when I told them that I had leukemia and I heard her little voice say, "Hello." That gave me so much will to live, knowing that I wanted to see her grow up, and she turns 28 tomorrow! And it's just been one of those. Just a desire inside that's so strong, you keep on going.

Dr. Harpham: And it was a desire that was fueled by your connection to people and your picturing goals or picturing future events that you wanted to experience.

Louise: I had a niece and a nephew graduate this past May, and I kept thinking, gosh, you know, the year 2000. Laurie and Michael will be graduating that year, I mean, this was 1988. And I'm thinking, I'm gonna be here in the year 2000. And I had to keep that positive goal and go for it! I remember at one point, after the bone marrow transplant, in 88 and I had gotten an appointment, some doctor wanted to see me in 1989. And at first that kind of alarmed me and it kind of shocked me and surprised me and I thought Gee, somebody thinks I'm really gonna be alive in 1989! Wow! I mean, gosh, they put that much faith that I'm gonna be at this appointment in 1989! And you know, then to reach the year 2000, it was just a big milestone. And every anniversary of the bone marrow transplant, and now the lung transplant. It's amazing to me, but I've never lost that will to live.

Dr. Harpham: So unlike people who are afraid to grow older, you celebrate milestones that mark the passage of time.

Louise: I announce my birthday with pleasure. I'll say, I'm 46 years old and happy to be here!

Dr. Harpham: Susan, what about you? What about will power and your survival?

SusanSusan: Well, I think being diagnosed with two young children, the will to be there for them and for my husband was so strong. And I did imagine things like my daughter, who is my youngest child, I would imagine being at her wedding or something. Just set a goal like that that you want to accomplish, and like I say, I'm just so grateful for each day that I am there. For with each problem that comes up I think, Oh, I'm here to help them through this. And to help solve it. And I'm just so glad that I'm able to do that.

Dr. Harpham: Did you ever feel a weakening of your will power?

Susan: No I really haven't. You know you get frightened and you get anxious and you feel like the wind's been knocked out of you, but the will stays there. For me it has never weakened. In fact, sometimes when I've had a recurrence it almost strengthens the will.

Dr. Harpham: The bigger the enemy the bigger the will.

Susan: Exactly.

Dr. Harpham: What about you, Mary?

MaryMary: You know, I think I have mixed feelings about will power. I guess it's because I'm a person without a lot of will power, or I seem to have it in some ways and in other ways I don't. so I have some mixed feelings about it. I think sometimes, I've known people I felt like were much stronger than I was spiritually and mentally who didn't do as well as I did, medically. And I felt, you know I also feel like, I didn't really beat the odds, I actually sort of the opposite. So I have mixed feelings about it. But I do feel like if I can keep my spirits up and kind of always have something to look forward to, that just physically I feel better. So it must have some impact. But, I have different thoughts about it different days. But..

Dr. Harpham: Well, was there ever a sense of guilt when things went wrong, when you had your recurrence, that sort of a sense of, if my will power was really good, it wouldn't have happened? That people connect will power with a successful medical outcome?

Mary: Right. Or like having a certain attitude.

Dr. Harpham: How did you deal with that? How did you find a sense of peace about that?

Mary: As I said, I know people who had, who had attitudes as good as you could humanly possibly have and who didn't do well, and you know, we all know people too mean to die. So I just, I guess sometimes I feel like I wish we had more control than we do. And sometimes that's what seems....

Dr. Harpham: Well, did that experience affect your sense of will power when you went into your transplant? Knowing that will power does not control all? Did that affect how easy or difficult or easy it was for you to strengthen your will to live when you went into this frightening transplant?

Mary: I think so. Because I was more passive the second time around. Not that it made any big difference. But I think I was more sort of a fighter the first time around. And something didn't work the way I wanted it, even if it was just sort of a matter like comfort, I would be more likely to speak up or try to get things changed. And I just felt like the second time around I was kind of going through the paces. So. I don't know. On the other hand I feel like sometimes the whole idea of will power almost puts an extra burden on cancer patients? You know, like I must never, ever let my positive attitude go down, or I'll get sick. And some days you just feel crummy, and you just give up.

I know, there were days when I'd say, You know, I'm just gonna go to bed. And I don't think that's so bad. I find even now at the end of the day, I'll feel just discouraged, or resentful and I'll say, you know what? You need to go to bed. It's just fatigue. I think it's unfair for people who don't have cancer, to say, "you've gotta have a positive attitude", that's what's gonna save you." Well, you go through that and see if YOU have a positive attitude. It's an expectation that I don't think is always helpful. Yes, it's good to have a positive attitude. Having one helps you to stay with your treatment, it helps you to get through it more easily, but on the other hand, you've got to cut yourself some slack sometimes and just, when you're feeling bad, you're feeling discouraged, rest. Maybe it's your body's way of telling you to just rest.

Role of spirituality in survivorship

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Dr. Harpham: Well, we're dealing with stress and uncertainty and risk, faith, spirituality, is another area of survivorship, and it's an area that can't be measured with a blood test or a scan. Like willpower. Mary, what role did spirituality or faith play for you? Do you feel like your faith has changed as a result of having cancer?

MaryMary: Interesting. It's hard to pin down for me. I feel like in some ways I was impressed by almost the randomness of life. You know, things just aren't fair. And I'm a Christian personally and the teachings of the bible are that things aren't fair, but we still have that expectation, that somehow if you do the right things in this life, you'll get your reward. And but I realize that things aren't fair, sometimes, and it's not for us to know to understand that. So in some ways things seem more random but I also find myself more consistent and more in my prayers and more close to God. So it's kind of a mixed bag.

Dr. Harpham: What about you, Susan? How did spirituality or faith play into your survivorship?

SusanSusan: Well, I think my faith has definitely increased over the years. Quite a bit right a first. I had two people that entered my life that I did not know very well that I just felt like were angels from God, and they kept telling me I was gonna be okay. And I truly felt like god was speaking to me through them. And just things that happened. It would be too long to go into, but it was wonderful. And it really helped me in those first few months of CHOP chemotherapy and the shock of this diagnosis and just getting through everything. It was an incredible help to me. I don't know that I could have gotten through it without that. And still it made me want to look for more answers, I guess. I attend more Bible studies now and I'm just more active in the church as the result of all this. I just want to be there, I want to help other people and so it's just a good place for me to be.

Dr. Harpham: What about you, Louise?

LouiseLouise: Well, I felt like my faith has increased, also, and I felt many times that because of some of the choices I made, were not made by me alone. At the time that I was trying to decide to have the bone marrow transplant, the decision I had come up with on the day of my deadline was to not make a decision that day. And those weren't acceptable answers, but that was all I could come up with because I just didn't feel right about it. And it was one of those times that you just have to let go and let God help you.

And so then the burden was lifted off of me and I was so relieved that I didn't have to come up with that choice, and I was just, that eventually I was going to get an answer. I mean it's just like being spoken to by God, was I was in the shower, taking a shower, washing my hair, and I just got this overwhelming voice that said, DO IT, YOU'LL BE OKAY. And quick as I could get out of the shower I called my doctor and told him I was ready, I was ready to fight and let's do it, and called my sister to tell her, you know, get ready, you're gonna be the donor. And it was so overpowering and so uplifting that I felt like I wasn't alone when I made the decision or that the decision was made for me.

Dr. Harpham: So faith helped you make your decision and also get in a frame of mind to undergo the challenge.

Louise: Right, that it was gonna be okay. That's always, that's the message that I got. And the same thing happened to me with my lung transplant. I mean, I had no idea when it was gonna take place, and I was listed on July 12, last year, and the night of the 15th of September, I was here, alone at the house. My brother was in the hospital, just having had open-heart surgery the week prior. And again, I got this overwhelming sound and this voice, clear as could be, that said, GO GET READY. I'm thinking, it's 11:15 at night, what am I gonna get ready for? And of course I was on oxygen and everything was an ordeal to do because I was so slow so I went and took a shower and got ready for bed basically, but the next morning at 5:30 a.m.

I heard on the news about the killings at that Fort Worth church in Wedgwood Baptist Church, and one of the family members was going to have their daughter's organs preserved for donation, and I said, out loud, I'm gonna get a lung today. And then at 3:15 that afternoon I got my page, and I had gotten the message at 11:15 the night before to go get ready, otherwise it would have taken me a good two hours to get down there to the hospital to shower and just preparation time was enormous being on oxygen means being run down so I was sitting there with makeup on and hair fixed and ready to go when the pager went off.

Dr. Harpham: Louise, that's an amazing story.

Louise: Well, and even more amazing is the fact that a book was written about these killings, and my donor got lost, out of four hospitals, her parents couldn't track her down, and it wasn't until 11:15 that night that she was identified. What a connection. I mean more than once have I been blessed, I've had my faith enter into it that I think god has directly spoken to me.

Dr. Harpham: Well, we've talked about a lot, from energy to fear of recurrence, to side effects of treatment, to will power and humor and spirituality and faith. Cancer can affect every sphere of life. I hope our discussion has helped you sort through some of the issues that may be a part of your life. A big thanks to our guests, Mary, Susan, and Louise, for their willingness to share their thoughts, feelings, and parts of their lives with us today. I hope that some of their experiences will help you think about and talk about your own concerns in healing ways. I encourage you to listen to our discussions we have available on the web-site, or by telephone. For the American Cancer Society's Cancer Survivors Network, I'm Wendy Harpham, wishing each of you a great day, today and every day.

             

 

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