Interviews with Survivors about Fatigue

Rebecca username: songstress Rebecca's Web page	Gary username: grein	Liz username: pbsct0799 Liz's Web page	Cheryl username: squeaky64 Cheryl's Web page

Rebecca's Story: Tired... but Inspired

Dick Foley:
Hello, and welcome to the American Cancer Society Cancer Survivors Network. I'm your host, Dick Foley. In this program, I'll be talking one-on-one with four cancer survivors who are in remission but are still experiencing fatigue and other late effects of treatment. As a cancer survivor myself, I am very pleased to have this opportunity to speak with our guests about subjects like: coping with fatigue from day to day; finding adequate long-term follow-up care; recovering your energy and stamina after treatment; getting others to recognize the ongoing nature of recovery.

Right now I'm speaking with Rebecca, a 40-year-old African-American survivor from the state of Wisconsin. Rebecca is divorced with no children. Hi, Rebecca.

Rebecca:
Hi.

Dick Foley:
In 2001, you have told us, you were experiencing persistent fatigue and back pain. The condition worsened, and so you finally checked into an emergency room, and because you have diabetes, you suspected that maybe these symptoms were related to that. Three days later you found out you had stage III multiple myeloma. Your fatigue was found to be linked to a shortage of blood, and so you underwent blood transfusions and were given additional platelets. You also had a bone marrow biopsy, and then you underwent four months of chemo. This proved to be effective, but you experienced some complications such as renal failure and blood clotting. So, you also underwent a stem cell transplant using your own blood and additional chemo. Your condition then stabilized. At about 15 months after your diagnosis, the cancer seemed again to be growing. So, you began trying different medications to control it. Several of these proved unmanageable because of your diabetes, and you are now taking a drug called, and let's see if I can pronounce this correctly, Rebecca, dexamethasone. Is that right?

Rebecca:
Yes.

Dick Foley:
Thanks so much for joining us today. I wonder if you can go back to the original diagnosis and tell us what the first things were that you thought about when you found out that you had cancer.

Rebecca:
OK, initially when I first found out that I had cancer, I was very surprised, because that was the last thing that I expected. I was pretty much scared, because I was alone. I don't have family, so it was a difficult time, basically, in my life.

Dick Foley:
Yeah, and I think maybe made all the more difficult, as you say, because you were indeed facing it alone, without a partner, without children. Did you have siblings or other family members anywhere close by?

Rebecca:
No, actually I moved here, so I don't have any blood relatives here. I have friends, but when I was diagnosed, it was just me basically.

Dick Foley:
So how did you get through that time? Where did you find the strength, and what helped you most to cope with your cancer?

Rebecca:
Well, I got through because of my faith.

Dick Foley:
OK.

Rebecca:
Basically it was because of my faith. I am a believer in God, and I just had a lot of friends who surrounded me and prayed for me and prayed with me, and I just stayed focused, because I was determined to live. I just wouldn't give up.

Dick Foley:
So that was your baseline attitude, and that is: "I'm going to beat this thing. I'm going to live."

Rebecca:
Right.

Dick Foley:
And you turned to your faith to find the strength to make that happen.

Rebecca:
Correct.

Dick Foley:
How long into this experience, Rebecca, did you realize that you were suffering from fatigue, and I'm not talking about just feeling tired and the fatigue that any of us might experience say at the end of a long day or if we haven't slept well but that kind of, you know, bone numbing fatigue where you just feel like you're walking through heavy mud.

Rebecca:
[laughs] When did I?

Dick Foley:
Yeah, when did you experience that?

Rebecca:
I started experiencing that, I would say, at least two years before I was even diagnosed, because I remember telling people that I was tired, and I knew the way that I felt was not the normal type of tired, because when I would go to bed and get back up, I was just as tired as I was--

Dick Foley:
Yup.

Rebecca:
--when I went to bed. It just seemed as if I didn't even sleep, basically. I mean, I slept, but my body didn't rest.

Dick Foley:
Right.

Rebecca:
That's what I'm saying.

Dick Foley:
Sure. Well, so that means then that this fatigue is something that presented itself even before your diagnosis, and you experienced it first as a symptom of the disease.

Rebecca:
Right.

Dick Foley:
Now was it worsened, do you think, once you got on the chemotherapy regimen? Did the fatigue get even worse?

Rebecca:
Actually, yes, it did get worse at some point, and so my body started getting used to receiving the chemo, and the chemo started to just do what it does, which is destroy the bad cells and the good cells, of course.

Dick Foley:
Yup.

Rebecca:
[laughs] And as time went on, and I started to heal, I started to get better, but the fatigue was still there, but not as bad as it was in the beginning.

Dick Foley:
I wonder if it was the fact that you were getting better and maybe could see a light at the end of the tunnel that at least part of the emotional burden was being lifted, and maybe that was making the fatigue have less of an impact on you.

Rebecca:
Yeah, that's pretty much--yeah, that sums it up. That's well spoken, as a matter of fact.

Dick Foley:
I wonder, though, if in the early conversations with your doctor, Rebecca, if any of them or anybody on the medical team told you that you might have really significant problems with fatigue and how to identify it--how to know if it was, as you say, "way beyond normal fatigue."

Rebecca:
OK, repeat the question. I'm sorry.

Dick Foley:
Well, I'm wondering if the medical team told you to expect it and told you how to identify it.

Rebecca:
No, not exactly. I mean, I knew--I understood what fatigue was. I mean, I knew what it meant to be tired, and I knew that this tired, what I felt, was not a normal type of tired. It was beyond the natural, physical fatigue, and I knew something was wrong.

Dick Foley:
How did you get through the day, you know, if you were that tired, how do you carry on? Put one foot ahead of the other?

Rebecca:
[laughs] It's called--actually, I'm still--my doctors were trying to figure that out. They were trying to figure out how I drove to the emergency room on that particular day, because they could not believe that I made it from one point of town to the other point, getting to the emergency room. But it was difficult, and I walked very slowly when I walked. I was depressed a lot. It was difficult. It was hard. I mean, I was hanging on for dear life, basically. That pretty much sums it up. I was hanging on for dear life during--

Dick Foley:
And you were doing it all yourself.

Rebecca:
Yeah.

Dick Foley:
How'd you get through the depression?

Rebecca:
I prayed a lot. I'm a person who has been blessed with the ability to sing, so singing seemed to pick me up, you know, and it's just by the grace of God that I'm here. I'm being as honest as I possibly can.

Dick Foley:
Sure.

Rebecca:
It's by His grace that I'm still here, and I made it through such a difficult time, because no one can actually do it alone, whether they acknowledge it being God or not, you're not alone in that situation.

Dick Foley:
And that may in fact provide the answer to my next question, because it sounds as though it is your faith that has been the most effective thing in helping you cope with this fatigue and with this disease.

Rebecca:
Yeah, it is. It is my faith that has kept me going and knowing that God is with me and for me, because He proved that when I was in the hospital.

Dick Foley:
You actually had a very profound spiritual experience, did you not?

Rebecca:
Right. That is correct. I have not been the same since.

Dick Foley:
So, have others noticed the difference in you?

Rebecca:
Actually, yes. Actually, they have. I can't really explain, you know, you would have to have known me before, but it wasn't like I was this terrible person before. It's just that no one is ever the same. At least that's the way I saw it.

Dick Foley:
Yeah. Can you put into words, Rebecca, the most important change that you felt come over you after that experience? I mean, you sort of locked onto the idea that you were going to live. Did this make that goal seem reachable?

Rebecca:
Yes, because in all that I've learned about Christ, everywhere He ever went, He brought life. Whatever He did, it was about life and about living, and I knew I was not going to die. All I wanted to do was to live for Him, even more so than I had been trying to do before I had become ill.

Dick Foley:
Sure. Tell us about the role that your physician played. I mean obviously we know that they diagnosed this disease, and they chose a course of treatment, but how about in conversations with your doctor or doctors? Were they helpful to you?

Rebecca:
My first doctor was--well, he's still my doctor, but I'm still under someone else, but my first doctor that I had to go through during the beginning stages was just more so into getting the disease under control and not very, well, I guess, personable. I don't know if that's a correct word, but--

Dick Foley:
Mm-hmm.

Rebecca:
--he just wasn't--and I wanted to communicate more, basically, but he just wanted to deal with the disease. And I figured, for me, I needed to get to know my doctor and what the person was about before I could really open up, but this particular person that I'm working with now, we have become, not necessarily friends, but we work together. And I know that's why I'm doing a lot better, because she wanted to know more about me, and she felt that I had a say in what was going on with my life, too. It wasn't just about what she thought I should do.

Dick Foley:
Sure.

Rebecca:
She also thought that I had a say.

Dick Foley:
So it sounds like if you had advice for doctors, it would be don't just deal with the disease; deal with me as a person.

Rebecca:
Right.

Dick Foley:
Especially, Rebecca, when you were really dealing with this awful fatigue, I mean clearly this changed your life, and you probably had to leave work and just spend a great deal of time battling the disease and getting better, how about those who weren't very understanding about your fatigue and its effects on you? How did you deal with those people?

Rebecca:
I'm glad you asked that, because that was one of the most difficult times of my life. Because I'm a young person, and because I have been blessed to look well despite what I've been through, people don't comprehend the fatigue, and they don't understand. They really don't understand, and it was very difficult for me because there were times I would become angry about it, because I'm like, "Why aren't these people listening to me?" You know, they're going by what they see, but they really didn't understand. They couldn't understand, and they wouldn't understand, so it got difficult.

Dick Foley:
Just to look at you, I assumed you appeared reasonably healthy?

Rebecca:
Right. So I just stopped trying to explain myself, and I just dealt with it as best I could, and I avoided people who were negative. That's one thing I learned to do through this, because you don't need to be around anybody or any situation that's stressful and negative when you're going through something like that.

Dick Foley:
I hear that. Was there any one person, Rebecca, in whom you could really confide and share some of your deepest feelings?

Rebecca:
Yes.

Dick Foley:
Family member? Friend?

Rebecca:
I had two family members and two friends.

Dick Foley:
How valuable were those people to you during this ordeal?

Rebecca:
Very valuable. Very valuable. It's important to be surrounded around people who care. These people weren't right by me, because a lot of these people ended up being like you and I are right now, on the phone, because they're in distant places. But that helped me, to know that someone cared enough to make a long-distance phone call and stay on the phone with me for awhile to keep encouraging me or kept me in their prayers or something like that or sent cards or just kept encouraging me. So I had a few people who were there for me, but I can't imagine anybody going through any form of illness and not having anyone with them.

Dick Foley:
Yeah. I know when I first read your story, I thought how difficult that must have been for you, because you were, in essence, alone, but there were those who cared for you, and that came through in their actions and their words, I take it.

Rebecca:
Yes.

Dick Foley:
Yeah. Because, I too, Rebecca, am a cancer survivor, and I've heard this story many times, I know that the last couple of years have changed your life greatly, but how has cancer and the effects of this disease changed your outlook on life?

Rebecca:
It has made me more aware of how precious life is and how precious time is and how important it is for us to really take the time to take care of ourselves and to love ourselves. We can't--I had a habit of taking care of everything else and everyone else except for myself, and I've learned that I can't continue to live that way. I have to take care of me, too, in order to survive, because I won't be any good to anybody if I'm not well. And in my profession, I have to be well to do what I do.

Dick Foley:
Sure. Tell us about your profession and what you do.

Rebecca:
I am an educator. I teach elementary school.

Dick Foley:
I bet your kids have missed you.

Rebecca:
Yes, they have, and I have missed them, too.

Dick Foley:
Now, the good news is, and you told me a little while ago, it appears that you may just, after the first of the year, actually be able to go back to work.

Rebecca:
That is correct.

Dick Foley:
I'll bet you're not very excited about that. [laughs]

Rebecca:
[laughs] Actually, I am.

Dick Foley:
I can well imagine.

Rebecca:
That's kind of hard, being a young person who is willing to work, because a lot of people are not necessarily willing to work. But I am one of those people that are willing to work, and that was very hard for me, to be off a whole year and a half.

Dick Foley:
Yeah, that'll be good food for your soul, I think, to be back among the kids again.

Rebecca:
Yeah.

Dick Foley:
Tell me one last thing, and that is, if you could speak with- -sit down and have a conversation with, or even talk on the phone with somebody who was early in your experience and just beginning to feel the effects particularly of fatigue, which is really our focus today, what advice would you have for that person to get through it?

Rebecca:
With fatigue?

Dick Foley:
Mm-hmm. [yes]

Rebecca:
I would suggest that the person find the time to rest. If they're tired, don't let anyone intimidate them or tell them that they're not tired or tell them that they need to find something to do. If they're dealing with that kind of fatigue, rest is the only--it seems like you're not getting rest because you're constantly fatigued, but at some point, once you start receiving the treatments and the medications that you need, your body will start to respond like it should. But the basic thing that you need to do is rest. That's the only way that you're going to beat the fatigue, because if you try to do anything else on top of being tired already, that's just going to continue to wear you down.

Dick Foley:
And that's very consistent with what you've learned, because you've already told us that you really had to learn and change and realize that taking care of yourself was very important.

Rebecca:
Yes.

Dick Foley:
Share with us, just briefly, something else that you learned in this experience, and that had to do with the shape of your head. You remember that story when you were wearing the different wigs? People began telling you that you had a perfectly shaped head.

Rebecca:
I forgot about that. [laughs] OK, I had several different people--when I had lost all of my hair, I started wearing wigs, but as time went on, and my hair started growing back, and I liked the way it looked, and I had gotten to the point where I got tired of being ashamed of not having hair, so I just stopped wearing the wigs. And as soon as I stepped out, people started looking at me, and I was like, "Why are they looking at me like this?" They were brave enough to come and tell me, "Ahh, you have a perfect head. I wish my head would look like that."

Dick Foley:
[laughs]

Rebecca:
I just thought that was so funny. I needed that at the time in my life. I mean that was really an uplift, because woman are sensitive about their hair and their heads. And everybody is not that fortunate to have the right kind of head when they lose all of their hair, and even though I didn't have any idea about my head being that shape, because I always had a good length of hair, so I never paid any attention to my head.

Dick Foley:
Sure.

Rebecca:
That's what I was told--that I had a perfect head, so I was like, "Cool."

Dick Foley:
That's a pretty cute story.

Rebecca:
Mm-hmm.

Dick Foley:
Well, talking with you even for a short time, Rebecca, it's pretty clear to me that besides the good head, you've also got a pretty good heart.

Rebecca:
Oh, thank you.

Dick Foley:
So, I wish you all the best as your recovery continues, and I know what a treat it's going to be for those kids to have you back in the classroom after the first of the year.

Rebecca:
Well, I appreciate you saying that. I look forward to it.

Dick Foley:
Thank you so much for sharing your story with us today.

Gary's Story: Guarding the Gift of Survivorship

Dick Foley:
Right now I'm speaking with Gary, who is a 56-year-old survivor from Wisconsin. Gary is married and has two adult children. Nice to talk with you, Gary.

Gary:
Thank you.

Dick Foley:
I'll do a quick recap of your story here, so folks understand what you have been through. In 1989, you found a lump under your right arm. It was misdiagnosed a couple of times before finally being diagnosed as Hodgkin's lymphoma. You had 40 sessions of radiation and then went into remission. During this remission, you had a CAT scan every six months. You had your first recurrence in 1992, when one of your CAT scans detected cancer in and on your right lung. You had about a third of that lung removed, and you followed this with eight months of chemo. Also, you had developed blockage in your arteries, and so you had surgery to relieve this. In 1994 you had a bypass surgery, after which you had symptoms of pneumonia. A bronchoscopy revealed that the Hodgkin's had then returned to your right lung, so at this point, you chose to have a stem cell transplant. Your heart was not functioning well afterwards, so early in 1995, you had a pacemaker installed, and after this, you recovered quickly. Then in 1998 you had what you thought was a cold. An ear, nose and throat doctor discovered that you actually had a nasopharyngeal tumor that was non-Hodgkin's lymphoma. You were treated with chemo and 26 rounds of radiation, but since then you have been cancer-free, and I would have to say that you are also probably greatly relieved since then. Gary, thanks very much for joining us today.

Gary:
You are surely welcome.

Dick Foley:
You've been through a lot, my friend.

Gary:
I've had my share.

Dick Foley:
Yeah, you have. Can you think back to 1989 when you got your first diagnosis, and do you remember the emotions that played out upon hearing or being told that you had cancer?

Gary:
Yeah, I do. It was scary. It was like getting kicked in the stomach.

Dick Foley:
Mm-hmm.

Gary:
Unfortunately, or fortunately, my wife worked then and still works at the clinic where my doctor's office is, and I knew the doctor, the surgeon, who had done the biopsy on the lump. He called from his car on this way back from having the biopsy looked at and told us that it was cancer. At that point, they did not know what kind, but they did know it was cancer.

Dick Foley:
I see.

Gary:
So, we were of course scared to death.

Dick Foley:
Yeah.

Gary:
In our generation, we have grown up with the fear of that word.

Dick Foley:
Yes.

Gary:
Unlike today's generation, I think, who has grown up with the fear of AIDS. That word just shook me to my core. Knowing I had cancer, it just scared me to death.

Dick Foley:
Yeah, I remember responding exactly the same. Mine was 25 years ago when I think that fear was even greater. It still exists today.

Gary:
Oh, yes, it does.

Dick Foley:
Perhaps it's lessened somewhat, you know, as we become a little bit more enlightened about cancer, but yeah, fear is the first response. So the call from the doctor's car would indicate some since of urgency, I guess, in his mind.

Gary:
Yes, and in ours.

Dick Foley:
And in yours. Did he recommend that you get into treatment right away?

Gary:
Oh, yeah. Yeah. At the clinic--like I say, my wife works at the clinic, and it's a large clinic with multiple practices and multiple disciplines. I think it was the next day or maybe the day after that that I saw the oncologist.

Dick Foley:
Wow.

Gary:
There again, my wife working there got me in. We got started right away. I had to go through the staging process. There were several surgeries and all this kind of thing.

Dick Foley:
Were they doing biopsies?

Gary:
Well, [laughs] fortunately they don't do a lot of these things anymore. I had a staging laparotomy, and they removed my spleen.

Dick Foley:
I see.

Gary:
Oh, golly, I'm trying to remember now what all was done. [laughs] A very nice thing called a lymphangiogram--

Dick Foley:
Mm-hmm.

Gary:
--where they inject dye into your feet in the webbing between your toes.

Dick Foley:
Ouch.

Gary:
Yeah, and X-ray the dye as it travels up from your feet, up your body to follow with the path of the dye and find out where the cancer is. Fortunately, they don't do that anymore.

Dick Foley:
Right.

Gary:
They don't have to. But anyway, that was part of the staging process at the time, to find out where I was on the line.

Dick Foley:
Yes.

Gary:
I was stage II.

Dick Foley:
OK.

Gary:
Which is treatable.

Dick Foley:
Yeah, that would have to be probably the first bit of encouraging news.

Gary:
Yes.

Dick Foley:
That you were not a stage III or IV.

Gary:
Right. Which, as you start on this, you start learning these things.

Dick Foley:
Right.

Gary:
You learn more than you ever wanted to know.

Dick Foley:
[laughs] It's a school of real quick hard knocks.

Gary:
Oh, it sure is.

Dick Foley:
Yeah. How soon did your radiation treatment begin?

Gary:
Well, I was diagnosed on September 27, my daughter's 21st birthday.

Dick Foley:
Wow.

Gary:
We started radiation the week before Thanksgiving.

Dick Foley:
OK.

Gary:
I had to heal from all of the surgery and things like that.

Dick Foley:
Yes.

Gary:
I ended in March with the radiation.

Dick Foley:
Now, all of us who know anything at all about radiation therapy know that one of the symptoms that it brings on is terrible fatigue, so that's something you began to experience, I would expect, fairly early on.

Gary:
Right away. Yeah.

Dick Foley:
And, how was it for you? How did you cope with it?

Gary:
Not well.

Dick Foley:
Really?

Gary:
No. I had not been warned, or at least sufficiently warned, about what to expect. I, at that time--well, nobody had computers like they do now. There were no support groups to log onto to talk to people and get information. You had to really go to the library and let your fingers do the walking through the books.

Dick Foley:
Right.

Gary:
So, I wasn't sufficiently prepared for what happened to me. My skin was burned terribly from the radiation. The fatigue was awful. The loss of appetite. Everything I tried to eat tasted metallic, so that I couldn't eat anything. I lived until April on raw vegetables.

Dick Foley:
Oh, my goodness.

Gary:
Yeah. I couldn't stand the smell of anything from grain.

Dick Foley:
Uh-huh.

Gary:
Breads, cereals, anything like that or meat.

Dick Foley:
Or meat?

Gary:
Or meat. Any kind of meat, chicken, fish, beef, it didn't matter.

Dick Foley:
Yeah.

Gary:
The fatigue became--it wasn't a primary problem. It became the problem as time went on, as I learned to cope with the loss of appetite and things like that. The burning skin--I got stuff to put on that. The issue of the fatigue became paramount.

Dick Foley:
Can you describe it?

Gary:
Yeah. You wake up in the morning after what you think or assume has been a good night's sleep, and you wake up tired.

Dick Foley:
OK.

Gary:
You get up and stumble down the hallway, and you try to have a cup of coffee or something and read the newspaper, and you need a nap.

Dick Foley:
Wow.

Gary:
Not a long nap. Maybe 15 minutes or 20 minutes.

Dick Foley:
And this, I assume, is every day.

Gary:
Every day. More than once a day. I was able to do a lot of things that I would normally do, but for not as long a period of time. For instance, reading a book. It would be nothing for me to sit down in the evening and read a 300-page book. Now it would take me maybe two weeks because of the fatigue and concentration factor.

Dick Foley:
Sure.

Gary:
You just can't do the things that you think you can do or you thought you could do because you are so tired.

Dick Foley:
For somebody who hasn't been there, it's tough to get your mind wrapped around that concept of being so drained and having such a low energy level.

Gary:
Right, and it ebbs and flows. There are moments and sometimes extended moments where you feel almost normal, but those are very fleeting moments; and they become, the more you go into the treatment, fewer and farther between. Now, when treatment is over, the fatigue lingers. You think, well, my last treatment is going to be January 1st, for example, and you think to yourself, well, by January 5th, 6th or 7th, shoot, I'll be back skiing down Devil's Mountain. Well, it doesn't happen that way. The fatigue lingers on and on. We call it the gift that keeps on giving.

Dick Foley:
[laughs] Thank goodness for your present day perspective that you can look back and smile at it, but it had to be rough thing to go through. How was it for your family? How did they do with it?

Gary:
Well, both my kids were in college at the time, and being book rats--they went to two different schools--they went to the college library and did all the research they could on it.

Dick Foley:
Oh, they did?

Gary:
Yeah, to find out what they could, and they became instant experts, of course, as only teenagers can do. My wife, working in the medical field--she's not a nurse, but she works within the medical community, took it a little more in stride. She had access to people who had all the information, not just bits and pieces. And if I woke up one morning feeling ‘X', she could go to work and say, "What's this?" And they would tell her, and she could come home, and we could work it out.

Dick Foley:
Oh, what a nice resource.

Gary:
Absolutely.

Dick Foley:
And it sounds as though, because your kids were away at college, your wife was really your primary support system.

Gary:
Oh, yes. She was my number one caregiver.

Dick Foley:
Someone to lean on.

Gary:
She's been a rock through the whole experience.

Dick Foley:
Wow.

Gary:
I'm very fortunate to have her.

Dick Foley:
I will come back in a minute to the ongoing effect of fatigue, but I want to deal, first of all, with recurrence of cancer, because you had multiple recurrences. It's one thing to be diagnosed and to be treated successfully and feel that you've moved past cancer, only then to have a recurrence and have all of this dredged up again, including the fear. Did that happen for you?

Gary:
Yeah. When I finished radiation in 1990, I asked the radiologist what the chances were of a recurrence, because by then I had become somewhat informed, and the word recurrence was not foreign to me. He said, and I'm going to quote him, because I continue to do so, "The chances of a recurrence are so small as to not be worried about it." I said, "Wonderful, I'm out of here." Well, and everything was fine until 1992. They found it had come back, so there, again, I had no symptoms.

Dick Foley:
Right, but fortunately you were being screened.

Gary:
Every six months.

Dick Foley:
Every six months.

Gary:
My oncologist is a real dogged kind of guy about that, and I had CAT scans every six months. Well, the first two years I had them every three months, and then we had advanced to every six months, and then they found it.

Dick Foley:
Well, you know, until we find more information about causes and maybe better treatments or even, though I'm always reluctant to use the word cure, maybe cures for certain cancer, these screenings are just the best defense we have.

Gary:
Yeah, my oncologist, when he told me about my odds being very small, he used a term that I found funny and still do. He said, "We've arrested it," and I thought, "Wow, it's in jail!"

Dick Foley:
Yeah. [laughs]

Gary:
It's arrested. I'm clear. Well, that turned out not to be the case.

Dick Foley:
Unfortunately it breaks out of jail.

Gary:
Well, yeah, and the medical community does not like the word cure.

Dick Foley:
I know.

Gary:
They don't, because of recurrences.

Dick Foley:
Yes. So, you're now, what? About two years down the road from your last treatment, or is it longer?

Gary:
Well, it was in 1998.

Dick Foley:
Oh, it was in 1998. OK, so you're almost four years down the road. Are you affected at all at this point by fatigue?

Gary:
Yes.

Dick Foley:
Tell me how it is now.

Gary:
Well, I've learned to cope with it in this manner. I told you earlier that I was going to, after we finish talking, go play golf, and I'm going to do that. The weather is beautiful today, and I'm going to go play golf. Tomorrow will be a day of rest, because of my playing golf today.

Dick Foley:
Now, will you be able to play 18 holes?

Gary:
Yes, but in a cart. I can't walk it anymore.

Dick Foley:
OK.

Gary:
In a cart, but, again, tomorrow will be a day of rest. I have seven grandchildren. If they come over, and we're playing, and somehow they've gotten the idea that I'm a jungle gym, and if they come over for a couple of hours or three hours, which is about the limit that I can handle, I have to almost immediately lay down and take a nap or go to bed. Then the following day is a wasted day.

Dick Foley:
I'm curious to know what your caregivers are telling you about this fatigue and whether you can look to the day when it will ever go away.

Gary:
My oncologist is very frank with me. He said it's one of the side effects that they don't fully understand. They understand the hair loss, they understand the nausea, they understand those types of things, but they don't understand the fatigue, because it affects each individual individually in different manners and for different lengths of time, and in different severity. He said there is no way of knowing, but we do know that it will bother me the rest of my life. Considering the amount of chemo, radiation I've had, I'll be affected the rest of my life. The key is management.

Dick Foley:
Yes, and I'm assuming that for that stem cell transplant, they reduced your immune system to virtually nothing before they did the transfusion of the stem cells.

Gary:
Yes, I went through a process that kidney patients go through--dialysis--and they take your blood and clean it and give it back to you. They take your white blood count down to where it cannot be counted that low, and you're pretty sick. And then they give back your stuff, and hopefully you get well, which I did.

Dick Foley:
Right, but you've literally started over?

Gary:
Oh, yeah. I had to get all my childhood shots again.

Dick Foley:
Oh, my gosh.

Gary:
Yeah, which never even occurred to me.

Dick Foley:
It hadn't to me either.

Gary:
After that, I would say--I had the transplant December 22nd, Merry Christmas, got out of the hospital January 8th, and sometime in the early spring, I want to say March, maybe April, they started giving me the shots again. I had to have all of them. It's like as a child you start--because all my immunities had been wiped out. That's part of the fatigue.

Dick Foley:
Yeah, of course. I'm wondering, for those you may interact with, whether it's friends or business colleagues or whatever, do they understand well, or do they understand rather poorly, your fatigue, if you will?

Gary:
[laughs] My friends do now, after this period of time. What threw everybody for the loop, and not just me and my family but my friends and at the time coworkers, I've retired since, was the long remission between 1990 and 1992. I was in almost robust health to everyone who saw me, because they never saw me when I wasn't feeling well. I would stay home.

Dick Foley:
You keep that under wraps.

Gary:
It was assumed that I was doing well, and they couldn't understand sometimes when I just didn't feel like doing something. Then I had the recurrence and another, and now they understand. Now they get it, but people who haven't been there don't understand. There is no way for them to understand. It just can't be done.

Dick Foley:
I want you to share, if you will, a little bit of your life philosophy and how it may have been changed by this cancer experience or, in your case, multiple experiences. How are you different?

Gary:
I don't take myself as seriously as I used to. I used to think that I was important in the grand scheme of things and that I was an important cog in the wheel of life, but I'm not. None of us is individually. The world will continue without a bump in the road if I'm not here, so I've learned to take myself with a grain of salt. I don't take cancer that way. I take cancer very seriously because it's a very serious disease and affects people in a very serious manner. But I've learned not to take myself that seriously, and that's helped a great deal. I've been able to handle a lot of this with equanimity because I'm not afraid to die. That doesn't scare me. Death does not scare me. My manner of death scares the hell out of me, because what I fear more than death is becoming a sick, invalid burden to my family, because I've been there. I've done that already, and I don't want to do that again, and so that scares me. I treat every day, or try to treat every day, as a gift. Like going to play golf. I played golf before more or less because it was something to do, and I enjoyed the game, but now I'm thankful that I have it, because it helps. I'm thankful that I have friends that seemingly enjoy my company. My wife and I have grown, oh boy, infinitely closer. We've developed a sense of humor between us that other people would shake their heads at. I told my friends when you're first married and going together, you're not in love. You're in lust, and there's a difference. You develop a love over time. We've been married 34 years, and we think alike now. I don't mean we agree politically or socially on everything, but if I'm not feeling good, she knows that without me telling her, and she knows that I'm going to need that day or that evening to just be left alone, and she tells our children and grandchildren, "Today is not a good day for Grandpa." My children have become better people because of my being sick, which is an unanticipated gift.

Dick Foley:
But welcomed, in a way.

Gary:
Absolutely. They don't think of themselves the way they used to. They think of themselves differently. They're more aware of their own health than they ordinarily would be.

Dick Foley:
Good for them.

Gary:
They take care of their children better, I think, than they would have, health-wise. They make sure they get their shots, and they go to the dentist and all that thing.

Dick Foley:
In other words, they're doing the things that all of us should be doing.

Gary:
Exactly, but they do it with another look in their eye of not just, "Oh, well, I have to take him to the dentist," but, "Let's go to the dentist and see what's there."

Dick Foley:
Let me go to one last point with you, Gary, if I may. You used the word "gift" in our conversation, and you have said that with that "gift" comes a responsibility. Describe that for us.

Gary:
We survivors have been given a gift, and that is our survivorship. With that comes a responsibility to those who come later, behind us, either the newly diagnosed or those that haven't been diagnosed yet. You and I have been the recipients of research, techniques that have been tried on those that went before us. Some worked, some didn't. They found out trial and error. That's how medicine works: "Let's see if this treatment works, and if it does, great. We'll try it on him too. If it doesn't, well, OK." In that vein, we have the responsibility to pass it on or to give it back to those who are coming behind us. I remember so well what it was like being told that I had cancer the first time. I was 43 years old. I wasn't a kid. I cannot imagine what it's like if you're a 17--in my case, I know of a 17-year-old girl who has been told or was told that she had leukemia. At that stage of her life, that shouldn't be. Therefore, I have a responsibility because I'm still here. I have a responsibility to help her if I can in any way possible. That's just the way it works. In my estimation, that's the way it works, and from a selfish point of view, that gives me another reason to continue. I have survived, therefore, I can help others survive; therefore, I will survive even longer.

Dick Foley:
I know, Gary, that for you and for me there will be lots and lots of opportunities. Maybe not daily, but frequent opportunities to provide help and comfort to others who are following in the experiences that you and I share. I'm glad you see it that way. I certainly do, and I think that your words today and in the sharing of your story will also be of great help to members of our audience, too. I thank you very, very much for your time and for sharing your story with us.

Gary:
I hope I've been of help.

Dick Foley:
It's been wonderful talking with you, Gary.

Gary:
Thank you.

Liz's Story: Living a "New Normal" Kind of Life

Dick Foley:
Right now I'm speaking with Liz, who is a survivor from the state of Massachusetts. She is 39. She is single with no kids. It's good to have you with us, Liz. Thanks for talking to us.

Liz:
Oh, hi. Thanks. It's good to be here.

Dick Foley:
Let me just recap your story a little bit for our listeners, and you correct anything that I don't have exactly right. This began in 1999, and you experienced some unusual fatigue, some pain, bruising and swelling in your legs. So you had a blood test and visited your doctor on three different occasions. Finally, you had to go to an emergency room where you were told that you had something called MDS, and that's myelodysplastic syndrome. I'm guessing a lot of our listeners don't know what that is. Can you tell us?

Liz:
Well, it's a blood disease. It's also called pre-leukemia, because it often transforms into full-blown acute leukemia. It's basically where your marrow is not producing blood cells properly. They come out too soon and too young, and they're not delivering oxygen to your body. It causes fatigue. Also, it isn't creating enough platelets, so you start bleeding easily and bruising easily and so forth.

Dick Foley:
So, it's definitely a pre-leukemic kind of condition.

Liz:
Yeah, that's what they said it used to be called.

Dick Foley:
Right, so that explains, then, why you were treated with what they call induction chemo. And then a few months later you had a stem cell transplant, and your brother was the donor. Now, you found out just before the transplant that what they had called MDS had really become AML, which is acute myelogenous leukemia, but this change did not really affect the course of treatment. I think they would have treated you the same way regardless, would they not?

Liz:
That's right.

Dick Foley:
Now, you're currently in remission, so you're more than three years down the road from that diagnosis.

Liz:
Yes.

Dick Foley:
How long since your stem cell transplant?

Liz:
That was in July of 1999, July 22nd. Just about a month ago I had my third anniversary.

Dick Foley:
Oh, congratulations. 1999 was a busy year for you, wasn't it?

Liz:
Oh, you bet.

Dick Foley:
Can you think back, Liz, to that time when you came to the full realization of what this diagnosis meant? When they told you that indeed you did have leukemia, what went through your mind?

Liz:
Well, when first they diagnosed with me with myelodysplasia, I thought, well, I don't really have cancer, but as soon as my white count went up, which was not even a month later, they told me that it was now leukemia, and I guess it just didn't dawn on me that it was cancer. I always thought it was some sort of a blood problem, but I didn't know that it was actually cancer of the bone marrow, and it took a while to sink in. I tell people it's a lot like when those planes crashed into the World Trade Center and Pentagon on September 11. It's like shock and disbelief. It's not really happening. What am I going to do now? When is it going to be back to normal? Those kinds of questions in your mind.

Dick Foley:
And the whole range of emotions that we all experience. I hear many survivors say that they finally get to the stage of acceptance where they accept that they are indeed going to have to battle cancer, and they set themselves to fighting the fight. How did you get to that stage yourself where you realized, "OK, this is something I'm going to have to do, and I'm going to do it"?

Liz:
Well, it's kind of like listening to what the doctors are saying is going to happen and preparing yourself for all of that, and it helps that I went into a chat room where people have bone marrow transplants--it's a support group online-- and talked to people who had been through the same thing. It kind of gave me an idea of what to expect, and so that gives you a new mindset of how tough it's going to be. And I don't know--you just get the idea that you have to do this, so whatever it takes, you'll just put up with it.

Dick Foley: Did you find that you kind of had to reach down inside yourself and find some strength that you didn't even know you had?

Liz:
Yeah, I guess so. That and talking to other people and just mentally in my mind deciding--I was scared a lot.

Dick Foley:
At what point in all of this did you begin to experience the fatigue and realize it was something unlike anything you'd ever experienced before?

Liz:
Well, the chemo really knocks you down quite a bit. Your body is not functioning normally. It doesn't have all the resources to pull from, and I guess if you try to do something, and it's too much, then you don't do that.

Dick Foley:
It has to be a difficult adjustment if you're accustomed to operating at a certain level.

Liz:
I was pretty active before. I played softball, and I went cross-country skiing in the winter and went walking every day. That's pretty much how I knew that something was wrong, because I couldn't keep up walking with my friends at work at lunch time walks. One time I came back from cross-country skiing, and I nearly passed out on the way back in, when I came back. I was starting to lose my red blood count. That's really a hard thing, being able to do the same level of activities, but you find other things to do.

Dick Foley:
There you go. Did members of your medical team give you some preparation for the fact that you were going to experience this fatigue and that it was more than just feeling tired? It was really a serious kind of numbing fatigue.

Liz:
Yeah, they did. I got a book that explained the whole thing, and it talked about fatigue. I still have that book and how some days you're not going to feel like getting out of bed or anything. I don't think I ever really had any of those days where I didn't feel like getting out of bed just because of fatigue. I had other reasons, like I had so much medication that I would just sleep all the time, but I never really had a day where I just wanted to lie in bed and do nothing.

Dick Foley:
What was it like, at its worst for you, just looking at the fatigue issue? When it was really at its worst, what was it like?

Liz:
Well, you try to do something, and you might feel fine doing it, but then when you're done, you just feel like a wet rag and not having the energy to go for a walk anywhere, not even a quarter of a mile or so, and not being able to--I like to play softball, and there was no way I'd have been able to do that, although I played last year.

Dick Foley:
How about today? What's your experience with fatigue now? Is it considerably better? Is it gone? Do you still experience some of it?

Liz:
I still experience it some, like I said, if I do a lot, and it kind of catches up to you. And the more you do, the longer you'll be down. Like for example, if I'm really active, I walk around all day and move stuff around the house, and then in the evening I'm just completely wiped out. I won't want to do anything the next day either, anything really strenuous.

Dick Foley:
So you'll, in effect, lose a day if you have a very exertive day?

Liz:
Yeah.

Dick Foley:
Now, what do your doctors tell you about how long this may be true for you? Will you ever regain, do they say, your normal levels of energy?

Liz:
No, I don't' think they've ever told me that I'll ever get it back. They just kind of say it's pretty much par for the course and normal for this to happen. I think considering what could have happened, I'm not complaining.

Dick Foley:
No, I completely understand that. What have you found to be the best coping mechanisms for you now, with this fatigue? Is it just sort of tempering your activities?

Liz:
Well, yeah. I call it "energy management." For example, I went down in April to visit my brother in Washington, and he wanted to walk around the mall all over the place, and I told him, "Well, I can walk maybe the whole length of it, but I'm not going to be able to walk in and out of the museum the whole time." It's kind of like that. You have to make time for rest, but if you're going on vacation somewhere, you have to make sure that after the trip you lie down for a little bit and take naps. I call it energy management.

Dick Foley:
That's a good term for it. You just know what your limits are. What you can do and what you can't do.

Liz:
Kind of plan your schedule and day around that.

Dick Foley:
Has your physician been of help to you in this, preparing you that this will be the way you need to approach life now?

Liz:
No, my doctor hasn't really done anything like that. Like I said, I have considerably less fatigue than most people do, so he's not really concerned about it, so I just kind of deal with it myself. He's not really concerned.

Dick Foley:
Self-discovery. You just cope with it as it presents itself to you.

Liz:
Right. They're concerned when my fatigue gets to where I can't even walk up the stairs without breathing hard, because that might mean that something's wrong with my cell count, but I tell them that I can do whatever I want to do. But you know there are limits.

Dick Foley:
When you do feel extreme fatigue, do you begin to entertain the thoughts or maybe even fears that a recurrence might be happening?

Liz:
Oh, yeah.

Dick Foley:
Do you? Does that ever go away I wonder?

Liz:
No, that hasn't yet. Sometimes you don't think about it all the time, but something will happen that will remind you of how you felt before you were diagnosed, and that will put a little question mark in your head. I have bone marrow biopsies every six months, and I have blood tests every three months, and everything always seems to be the same.

Dick Foley:
Well, that's good, but it's amazing how one experience with a cancer like that will make you a believer in the importance of screenings.

Liz:
Oh, yeah.

Dick Foley:
We need to get your approach to it--and mine too, for that matter, because I'm a two-time survivor--out to more people, because if we could get more people to be screened, I think we could probably do a lot better job saving lives from cancer.

Liz:
I don't think I was diagnosed early enough. I didn't get a blood test until the third visit to the doctor. My hematocrit was 50, and I was really feeling terrible. They should do a blood test anytime a patient complains of fatigue.

Dick Foley:
Yes, certainly if it's a persistent fatigue. So you think that maybe there might have been a little bit more aggressiveness in diagnosing your case, and it might have come earlier?

Liz:
Right. I had never been sick before, so I guess the doctors thought that maybe I was just slowing down and getting a little older or something.

Dick Foley:
Now, Liz, you're not that old.

Liz:
[laughs] I was 36 at the time. I don't know. I don't know why they never took a blood test, but I was practically ready to have heart trouble if it had gotten much lower.

Dick Foley:
These cancer experiences do change us, and sometimes the changes are long-term. Have you had any experiences--now you talked about your brother, and maybe he expected you to be able to do a little bit more than you really could. Have you had others, friends or coworkers, who had difficulty understanding or accepting the fact that you have to live a little differently now?

Liz:
Well, yeah, my mom doesn't understand that I have to be careful about picking up germs and things like that. Because of my transplant, my immune system is still a baby. Things that you wouldn't give a toddler, you can't give to me. I have to be careful with germs and catching colds. She just doesn't think that anything has germs in it, I guess. That's something that's a problem, but my work is very--it's a desk job. It doesn't require much energy in the first place.

Dick Foley:
And you're back working full-time?

Liz:
Yeah. None of the rest of my friends or family is having trouble with it. They're just happy that I'm still here.

Dick Foley:
[laughs] Absolutely. Are there ever any days at work when you think the end of the day is never going to come?

Liz:
Well, it's kind of a busy job.

Dick Foley:
You don't have time to think about that.

Liz:
Right. [laughs]

Dick Foley:
Probably enough time has gone by, and I'm sure you've had a chance to think about it, but would you say that cancer and it's effect, one of them being the fatigue that we've been talking about, has it changed your outlook on life?

Liz:
Oh, definitely.

Dick Foley:
Tell us how.

Liz:
Well, most people say this sounds typical, but I feel a little more appreciation for the things I see and every day that I have; and I think about the future differently. I don't think I'm going to live forever anymore, and I'm probably not going to live as long as most people, and I have little less tolerance for people who bide their time about things. I have a little less tolerance about people getting things done. I have a new appreciation for time, so I don't want to waste my time sitting around just watching TV or going shopping or doing things like that that don't really matter. I've started volunteering as soon as I was able.

Dick Foley:
Tell us what you do in the volunteer realm.

Liz:
Well, one of the things I volunteer is that I help host the chat room that helped me get through the bone marrow transplant.

Dick Foley:
Oh, you do? So you have an opportunity now to reach out to others who are going through the cancer experience.

Liz:
Yes, that's right.

Dick Foley:
What are the rewards for you in that?

Liz:
Since I had such a good recovery, I can give people hope that they can also do well and look forward to a reasonably normal life afterwards. It's called the "new normal." So, you've heard that term?

Dick Foley:
Yeah.

Liz:
I really enjoy talking to people who have just been diagnosed or even people who are taken care of, and I tell them that not everybody dies. The other volunteer work I do is for the Red Cross in the blood donor room. You know how after you donate blood, you go get some cookies or some juice?

Dick Foley:
Yes.

Liz:
Well, I'm the lady who hands out the cookies and stuff.

Dick Foley:
Oh, that's great, Liz. Good for you.

Liz:
I'm the cookie and juice lady. I'm the only one who doesn't have blue hair.

Dick Foley:
[laughs] Well, I'm glad you're doing well. It sounds like your spirits have returned, as well, and you're back to work, and you're volunteering and reaching out to others with cancer. So I'm glad that's all behind you.

Liz:
Thank you.

Dick Foley:
We thank you very much for taking time to talk with us and share your story.

Liz:
You're welcome.

Cheryl's Story: Toughing It out as a Single Mom

Dick Foley:
I'm speaking right now with Cheryl, a survivor from the state of Missouri, who is 38 years old. Cheryl is divorced, has three sons ages 17, 13 and 11. How are you Cheryl?

Cheryl:
I'm good, thank you.

Dick Foley:
Good, thanks for joining us. In the year 2001, you had a routine Pap smear, and the results came back somewhat abnormal. The doctor did a colposcopy to test the outside of your cervix and the area around your ovaries, and that showed some pre-cancer. You then had a laparoscopy, which showed endometriosis. The doctor did a conization, and you and I talked about that. That is a procedure that I was not familiar with, but it was done to remove damaged or diseased portions of your cervix. The tissue was analyzed, and they found lymphoma, of all things. You were referred to a gynecologist who specialized in oncology, but this doctor said that he could not help you because you had a blood disease or a blood-related cancer. So you switched to a medical oncologist, and you've stayed with this doctor since. This physician decided that you should have aggressive treatments, so a month after your diagnosis, you underwent about three months of chemotherapy. Chemo, of course, hits individuals very differently, and it made you very sick.

Cheryl:
I underwent--it was more than three months.

Dick Foley:
Oh, it was?

Cheryl:
Yes, I went from August to December.

Dick Foley:
Oh, my goodness. And during that time, you had to be hospitalized several times because of the effects of the chemo?

Cheryl:
Yes. My body just reacted differently to it, I guess. My immune system would get so low.

Dick Foley:
Sure. So obviously it's an understatement to say that you were very drained through all of this, but you continued to work part-time, and you are currently in remission. I assume that's still true.

Cheryl:
Yes. I had my six-month check-up two weeks ago, and I'm still in remission.

Dick Foley:
Well, congratulations. That's kind of a nice feeling, isn't it?

Cheryl:
Yes.

Dick Foley:
It hasn't been all that long, but can you go back and remember the first thoughts that flashed through your mind and maybe the emotions you felt, too, when it was clear that the diagnosis was cancer, regardless of what kind of cancer? How did you feel?

Cheryl:
I had talked to my pastor a couple of weeks before we found out the final diagnosis, and the reason I had talked to him was because he is a lymphoma survivor. So I just went to him just to get some kind of picture of what he went through, even though I was still thinking in my heart that I wasn't sick. When the final diagnosis came in, I won't say that I was totally surprised, but I think that word is a bad word. I was in my bedroom, and I was on the phone with the doctor. It was about 10:30 at night, because he had called during the day and asked me to call, and it didn't matter what time of the day or night it was. Well, when you get those kinds of phone calls, you know that something's up. So, I called him back, and he asked me, "Are you sitting down?" I said, "No, sir," and he said, "Well, you might want to," and he said, "I don't know how to tell you this, because I have never seen a case like this, and I've been a doctor for 30 years." He used to work at a hospital where he worked with cancer patients, but he told me, "We have checked and rechecked, and we even sent the results off to two other hospitals to make sure that what we found is really what's there," and he said, "I hate to tell you this, but you have lymphoma," and I just fell. I just--"No, there's no way."

Dick Foley:
So, that was not an unfamiliar term. You knew exactly what he meant.

Cheryl:
No, I did not. I said, "OK, what's a lymphoma?" And then he said, "Well, it's a form of cancer." Of course, when you hear cancer, of course you know what that is. He'd already told me that there were precancerous cells, but he said those could be treated on a three-month basis, going back and forth, and just being on medication. But not in my wildest dreams did I think that I had a life-threatening disease. I didn't feel sick until they started doing tests on me.

Dick Foley:
Had you had symptoms? What led you to believe something was wrong?

Cheryl:
The symptoms that I was having, I was having problems with my legs. They would get really tired in the evenings. I was having problems with my cycle and just some kind of all- around things. But I still wasn't thinking anything was wrong, because all I did was go in for my annual exam to see if there was something that could be taken care of on my cycle, because I would be in bed on the second day, not being able to do anything, and so we just started out--that's how it started out, with just the annual exam, and it came back abnormal. What I can tell you is that the doctor I had from the very beginning, who is a gynecologist, I just thank God for him, because he didn't stop. Some doctors would have said, "Well, we didn't find anything," and I could have gotten a whole lot sicker, or it could have moved into more stages, but he didn't stop. He just kept saying, "There's got to be something here, and we're going to find out what it is."

Dick Foley:
When you hear the word cancer, and it scares you to death, how do you get past that?

Cheryl:
[laughs] It's very hard to get past. I have a very supportive family and a very supportive church, and God is everything in my life. But it was very hard for me, because I was the very first in our family who had been diagnosed with any type of cancer, and we have a large family. There's five kids just from my family and my parents, and my dad has a lot of brothers and sisters, and my mom has 13 brothers and sisters. So this is just quite unbelievable. And then to find out even after that--because that was when I started going to the appointments, and they were saying, "There is no case. We can't find any other cases. We don't know how to treat it. This is just going to be, not a study, but this is how we're going to have to treat it, because we don't really know what perimeters we're looking at."

Dick Foley:
Did you feel like a test case?

Cheryl:
I did. I really did. When you hear cancer, all you think of is: "Oh, I'm going to lose my hair," and "I'm going to look terrible," and all that stuff, and I did. I lost my hair within a month after the first chemo treatment.

Dick Foley:
There's a cute story about that. I know you teach youth at your church, and there was one young man who just kind of teased you in a nice way. It probably made you more accepting of your hair loss.

Cheryl:
He did. He would either take off my wig that I had on or take off my scarf that I had on and just rub my head and kiss the top of it, and he was crazy. And then also my work, where I work, they were awesome. They had a benefit for me, and they named it "Shaving for Cheryl," and 17 people ended up shaving their heads. So, that helped a lot, because you feel accepted, you feel supported. I couldn't have asked for better friends. In the process, they raised money, too, which helped pay bills--but just them offering even to shave their heads--one of them is a detective, and that would have been the last thing in the world I would have thought he would have done, because he has just the Miami Vice kind of look. So it was very shocking, very surprising when he approached me and said he wanted to do that.

Dick Foley:
Even your dad joined the bald parade.

Cheryl:
And my dad, that's right. They showed up the day of the benefit, and I had no idea. I walked into my house and said, "Where's daddy?" And he comes walking around the corner, and I went, "Oh, my goodness," and we looked liked two twins then. We looked just exactly alike.

Dick Foley:
Here you are, then, with this incredible, scary diagnosis, kind of an unfamiliar cancer, even to the professionals, so you've got to deal with all that; but still, you're a mother of three.

Cheryl:
Right.

Dick Foley:
You've got three little boys. How are they dealing with all of this?

Cheryl:
They were great. They really were, and still are. They are very supportive, because I have not had the energy that I had before. Chemo takes a lot out of you, to where just getting up out of bed sometimes is just too much to do. My kids would play cards with me to make me forget about my legs shaking because of the medicines that I was on, or they were constantly doing something to make me not think about what was happening, and they were really great. I was tired all the time. I would come to work, and I'd work until noon, and then I'd go home and sleep in the afternoons. And when they'd get home from school, I'd try to be up. But as a single mom, I have not really had that opportunity to spend with my kids anyway during the school day, because I was at work. So that was kind of a good time for us, even though it was a hard time.

Dick Foley:
Your boys, I'm sure, have been accustomed to seeing you as sort of a symbol of strength, if you will, as a parent, and suddenly you are weak. You're dependent on others for your care, and that had to be a different concept for them.

Cheryl:
It was very different. It was very hard for them to understand at first, and I started looking at fatigue everywhere so that I could try to find a way to explain it to them on their level, and my two youngest I sat down with one night, and I said, "This is what I need you to understand. Mommy says she's tired all the time, but I don't think you understand what I'm saying when I'm tired," and so I said, "Think about yourselves running one of the longest races you've ever run, and you haven't prepared yourself for it, and think of at the very end your lungs are hurting, your legs are hurting, your arms are hurting, everything is hurting, because you weren't ready for it, and the air coming in," and I said, "Just think how you would feel at the end of that race," and that kind of helped them understand a little bit better what fatigue really is. People, when you say you're tired, they're thinking, "Oh, she didn't get enough sleep. She didn't get enough rest." They don't understand what fatigue is until--I don't think anybody understands what it is until they go through it. I definitely didn't until I went through it.

Dick Foley:
So, how well did your doctors prepare you for the kind of fatigue that this chemo would bring about?

Cheryl:
They didn't. That's the sad part. I don't know if they don't know how or if they're afraid to tell you. I just don't know, but I wasn't prepared that I would not have that energy. I've always been on the go, worked two jobs if I had to just to put food on the table, run after them. They're very active in school and sports, and different things like that, active in the youth department, active in the choir, so I'm always on the go. Then all of a sudden this happened, and it was like, "I can't do all of those things. I can't do any of those things," and it really affected me for a while. It really did. I went through a depression, and I went through, "What exactly is going on with my body." And there's no really, I don't think, in the area that I live--and I don't know about other places if there are doctors to talk to--but I don't think that anybody can really explain to you or help you understand what fatigue is unless they've been through it, because they don't really know. The fact that I was on the aggressive treatments was a little bit different than for somebody who just went in for once a month or the medicines or different things like that, to actually sit there and see this medicine going into your body. Every time you went in, you're thinking, "What dummy would do something like this?" [laughs]

Dick Foley:
What's the poison you're putting in me?

Cheryl:
Yeah, this is poison I'm putting in my body. What's my problem?

Dick Foley:
Aggressive chemo is indeed just that. It's certainly very aggressive. Who, then, or what were your sources of strength, especially when the depression set in?

Cheryl:
I would have to say one of my best sources of strength was my youth pastor, who is a very good friend of mine and also my music minister. They're both very Godly men, and they would call and pray with me at different times of the day and night. They would come and visit. I had two great ladies in the church that would come over and clean the house or do the laundry or different things like that.

Dick Foley:
The really nitty-gritty, necessary stuff.

Cheryl:
Right, the necessary things. It got to the point where, "There's dust on top of that cabinet, but it can stay there." [laughs]

Dick Foley:
[laughs] You just kind of lighten up a little bit.

Cheryl:
Yeah, and if they're coming to see my house, then it's a problem, because I'm not going to get up and clean it. You know, that kind of thing. They can come to see me, but don't worry about my house.

Dick Foley:
How long since your last chemo? How many months has it been?

Cheryl:
My last chemo was the end of November.

Dick Foley:
The end of November last year?

Cheryl:
Mmm hmm [yes].

Dick Foley:
So, what's your level of energy now, or is fatigue still an issue in your life?

Cheryl:
Fatigue is still an issue, but I will say, when the doctor told me that it would be six months to a year before I'd have my energy back, I was like, "OK, this isn't fair." [laughs] "You've already taken six months out of my life, now you're going to take another." At first, I thought, I'm not going to be able to do the things that I want to do, and I still can't. My eyes get tired in the evenings. My body just kind of says, "OK, it's time to go to bed." There were problems while I was on the chemo. My sleep pattern got messed up, so there were different medications that they tried me on for that. Acid reflux was a problem, so they had me on medicine for that. I was on so many other medications besides the chemo.

Dick Foley:
Chemo brings its own complications with it.

Cheryl:
Right. The prednisone--I gained weight, mostly water weight, so that caused some problems in having to find clothes that fit. When you gain 20 pounds, it's like, "OK, this isn't fair, either," because you look at yourself in one way, and then all of a sudden you're looking at yourself in another way, and you don't feel like you're pretty. You have no hair, you've gained 20 pounds, you look as white as a ghost. But all I can say is that people around me would love on me. They would say, "Cheryl, you look so beautiful today," or, "Come and hug my neck," or just something. I think the main thing about it is your attitude. Your attitude about everything has to be: "I'm going to get through this." If they see a smile on your face, then they're not going to say, "Well, how are you feeling today?" Instead, they're going to respond with, "Hey, you look great today," and I think that was one of my main things that I had to overcome. I'm not an overt extroverted person. I was very introverted. If I came in with a sad look on my face, or if I came in very tired, there response was: "What can I do for you," or, "Oh, Cheryl, you look really--you need to go home." But if I would come in with a smile on my face, or if I would come in with a totally different demeanor, then that's the way that they would react to me. My doctor from the very beginning, she told me, "Your attitude is going to be one of your main things that's going to get you through this."

Dick Foley:
Oh, so you got that from a physician?

Cheryl:
Yes.

Dick Foley:
Oh, that's great.

Cheryl:
Yes, and different books that I picked up to read. One of them is Chicken Soup for the Cancer Survivor. That's a very good book, and one of the quips in there that I will never forget is two doctors that were seeing patients. They were in the same building and giving the same diagnoses, giving the same kind of treatment, and that kind of thing, and chemo has different acronyms, and my acronym was CHOP. Well the one doctor, his was EHOP, and so he told them, "This is what you're getting." Well, this other doctor, after about a year of them going through this, the first doctor came to him and said, "Why are your patients so different from mine? Yours just look like they want to keep on going, and mine just look like they want to drop any minute," and he said, "Well you call it EHOP, I call it HOPE."

Dick Foley:
Ah-ha.

Cheryl:
[laughs] So, I think it makes a big difference with your attitude.

Dick Foley:
But there have to be days when you might not feel like having a positive attitude. You might even be feeling sorry for yourself. How do you turn it around on those days?

Cheryl:
It's very hard. It really is. Those are the days where you really have to have a best friend. You have to have somebody that loves you no matter what.

Dick Foley:
And I assume you have that.

Cheryl:
I did here at work. I did not at home. Unfortunately I had gone through a divorce this year, and I just didn't have the supportive type of atmosphere I needed at home. With my children I did. But I had raised them on my own, prior to us getting married in 2000, anyway. But anyway, my support was just knowing that God was going to take care of me.

Dick Foley:
I've heard people say, too, and this may be just another way of God taking care of you, that cancer allows us to get in touch with inner strength--sometimes strength we didn't even know we had.

Cheryl:
Exactly.

Dick Foley:
Was that true for you?

Cheryl:
Exactly. There were instances where I just didn't think-- there's no way I can get up and go to work today, and I did. I still worked 20 to 30 hours a week. My doctor, of course, didn't want me to. She said, "My patients don't work. I tell them not to, but I can see right now that that's not going to work, telling you that, so go ahead and work." But my employers were very empathetic in the fact that if I had those days where I couldn't come in, they would know that it was not an excuse, that I'd been drinking the night before. They knew that if I wasn't here it was because I was really sick.

Dick Foley:
Were there any individuals though who had any difficulty grasping this notion that this fatigue was just knocking you down, who couldn't accept it, or didn't believe it?

Cheryl:
My husband.

Dick Foley:
OK. That had to be tough to deal with.

Cheryl:
That was very tough to deal with. He still wanted a meal on the table, the house to look good, the groceries done, all those things. So I had all that stress on top of everything else, and that's where the ladies in the church came and supported me and took care of things, because they knew I couldn't. I think you really have to have a great support system in any crisis, and cancer especially. I've talked to people since I've been a survivor, and I've told them, "If you ever get a chance, just go to a chemo ward and sit with somebody or just go in and take something to somebody," because I would go into that ward and there would be 20 of us sitting there getting our medicine, and you could look around and see the ones that really wanted to go on, or you could see the ones that were just saying, "Just give it to me." There were times I would go in there with a wig on with the different colored green and gold, just to see if I could get them to laugh just a little bit, because it was the most depressing place I've ever been in my entire life.

Dick Foley:
Isn't it interesting how we survivors develop this need to give back and to help others?

Cheryl:
Yeah.

Dick Foley:
It is quite remarkable, really. Are you feeling now, in your recovery, that you're making progress, you're making gains, your energy is improving over time?

Cheryl:
I can honestly say now, it's been almost seven months, that I have energy. I can't say that I have all of my energy, because I'm not used to going to bed at 9:00 at night, but when your eyes get so tired that you can't keep them open, you say, "OK, I give up."

Dick Foley:
Can't fight it anymore.

Cheryl:
I just came back this past weekend from a mission trip, and we went to Montana, and I was in the outskirts. I was in this itty bitty town of 83 people, one road in and one road out and mountains all around us, and I actually climbed mountains and had a great time.

Dick Foley:
That must have felt so good.

Cheryl:
Oh, it did. It just felt so invigorating compared to what I had before, and so I think it has a lot to do with: "Do I want to get up and go, or do I want to just stay here in this bed and let life pass me by?"

Dick Foley:
Kind of sounds like the old "attitude" word again, doesn't it?

Cheryl:
Right, but I had an absolutely wonderful time. Now, I can say I've honestly been tired since I've gotten back, because it was a long trip, but I am gaining my strength, which I didn't think three months ago. If you'd have asked me if I was gaining my strength, I would have said, "No. I don't understand it. I want to be." And that's one of the things that I have talked to my doctor about numerous times, because I go back in for check-ups, and before, I was seeing her a lot, and that was one of the things that I would ask her. In fact, after my first chemo, I went in and said, "Why am I so tired? What is going on?" That is when she finally said, "Some people go through what's called fatigue," and so then from that point on, I tried to find anything that I could on fatigue so that I could understand what my body was going through.

Dick Foley:
So, having learned what you have learned, what would you say to others who might be earlier on in the curve here, who are just beginning to deal with fatigue and wondering if they can cope with it?

Cheryl:
Oh, man. I don't honestly know, because I really didn't think I could cope with it. But the one thing that I would really tell them, especially if they're in their first parts of chemo or whatever, is write down all of your questions, and don't let your doctor leave the room until he or she has answered every one. If it sounds dumb, don't worry. Ask it anyway. Find out how much your doctor really knows about what you're going to go through, and if you're not happy with what they tell you, then find someone who really understands. I believe in my heart that the ones that really understand are the ones that have been there. You can treat a lot of patients, but it's just like my doctor said, my symptoms may be something totally different from someone else, and if I don't say something about it, then the doctor never knows what's going on. I was having problems with sores in my mouth. I was having problems breathing, and I would say, "Is this happening to anyone else?" And she would come back with: "Different things happen to different people." She could never say or would never say, "Yes this happens to all of my lymphoma patients."

Dick Foley:
But ask the questions that pertain to what you are going through.

Cheryl:
Exactly. Exactly.

Dick Foley:
You've already given us an inkling of this already, but tell us, if you can put it into words, how cancer and its effects have changed your outlook on life.

Cheryl:
I have a second chance, and I'm going to enjoy it. I really am. I never thought a year ago I would be climbing a mountain. [laughs]

Dick Foley:
I bet those boys of yours are glad to have their mom back, too.

Cheryl:
Yes, they are, and my employer and fellow employees are glad to have me back. too. [laughs]

Dick Foley:
Well, Cheryl, you've had quite an experience over the last year or so of your life, and we're really grateful that you would share it with us. I think that, just as you say, when people hear from others who have been there, I think somehow it's more meaningful than hearing from a professional, even though we need the professionals in their role. But the sharing of these stories is really helpful to others who are going through or may go through what you've been through.

Cheryl:
Right, and one thing that I want to tell you is that I'm very thankful for the [Leukemia] Lymphoma Society. But one thing that I looked for in my search was articles on fatigue, or people going through it, and there was nothing there. At the time, I was thinking, "Is this just me? Am I the only one going through this? I can't be. There's just no way."

Dick Foley:
Did you ever find anything?

Cheryl:
I did. I just kept looking, but it was patients that had already been in remission for two or three years or whatever, but they could still relate to me what they had gone through. Like I said, fatigue is a part of the cancer. And that's what each patient needs to realize, because it's not you going crazy, or it's not you thinking that something's wrong with your body--because fatigue is just one of those symptoms, and it's one of the main symptoms. It affects every part of your being, whether it be picking up your hands or washing a dish or dusting the furniture or putting a load of clothes in the laundry, whatever--driving to work. It affects everything, and people need to realize that.

Dick Foley:
And maybe stay focused on the fact that, like you, one day they'll be able to talk bout fatigue in the past tense.

Cheryl:
Amen. [laughs] I think it helps to share, because I think sometimes as patients we are afraid that if we say anything, we'll be looked at like, "OK, you big dummy," or "OK, so what?" or something like that. I think caregivers of cancer patients really need to know that fatigue is a total tiredness of the whole body, and it's not an excuse to get out of doing something. It's total loss of energy. And the caregiver, if you have a great caregiver which I did, one of the ladies in the church was great for me. If you have a great caregiver, and they can see that change in you and then they know how to take care of you instead of still expecting all those other things that you did before, it makes it a whole lot easier to go though.

Dick Foley:
Well, we appreciate your helping us better understand it.

Cheryl:
Thank you so much.

Dick Foley:
Best of luck to you as your recovery continues, and may you remain cancer-free.

Cheryl:
Thank you very much, and I pray the same for you.

Dick Foley:
Thank you, Cheryl. Each time I enter into one of these conversations, I am always blown away and surprised by what I learn from survivors, especially recent survivors. Having been there myself, I am very close to the issues, but still it's always inspirational for me to talk to someone like you, so thank you very much.

Cheryl:
Thank you.

Dick Foley:
I hope these personal interviews help you with some of the concerns that may be part of your life. I want to thank our guests for their willingness to share their experiences and thoughts with us. I encourage you to listen to other recorded programs we have available on the Web site at www.cancer.org and on the phone by calling 1-877-333-HOPE. For the American Cancer Society Cancer Survivors Network, I'm Dick Foley, wishing each of you a great day, today and every day.

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