ANDREW:
Hello, and welcome to the American Cancer Society's Cancer Survivors' Network, the service created by and for cancer survivors. In Seattle, I'm your discussion leader, Andrew Schorr. Today's topic: caring for a friend with cancer. On the phone with us are three people, one man and two women, who have helped a friend deal with the day-to-day struggles as well as the life-and-death issues of cancer. Over the next few minutes we'll discuss issues such as: being a friend to the whole family and not just the patient; witnessing and learning what some have called "the art of dying"; and the new friendships that come with support groups and changing lives. We'll also hear some heroic personal stories about supporting others living with, and dying from, cancer.

Now let's begin. I'm glad to be able to introduce Dick, from Seattle. Dick, you had a close friend who was initially diagnosed with a benign brain tumor. He was treated, but then that tumor came roaring back malignant, and that caused his demise. Am I right?

DICK:
Yeah, that's correct, Andrew. There was about a year and a half or two year interval after the first episode that he had, for which he was treated with radiation therapy. Then he went into a kind of remission, though the tumor had initially been diagnosed as nonmalignant. But when it came back if was of the very dangerous variety and, in fact, it turned out to be the lethal variety.

ANDREW:
And your friend, his name was...?

DICK:
Ed.

ANDREW:
And at the time of his death, how old was he?

DICK:
Ed was 61 when he died. He had married, however, later in life to his second wife. They had produced a child together who, at the time of Ed's death was only about 17 at the time. So he left a young son.

ANDREW:
Being a cancer survivor, did this give you any insight into how to help your friend?

DICK:
Well, I think so. Of course, they were very different situations. Mine resulted in successful treatment. And at that time, of course, I went through all of the emotional adjustments that one does when you're faced with that kind of a life-threatening illness. But in Ed's case, once we heard the diagnosis and began to observe how quickly he was slipping, it became apparent, I think, to those outside of his family... Perhaps even more so than to his family, who was trying very, very hard to deny that they were losing him. I think we were aware of it. Though for the most part it remained unspoken, and it was just a matter of trying to help him maintain as good a quality of life for as long as he could. Though we knew kind of quietly and secretly that he probably wasn't going to survive this.

ANDREW:
You say quietly and secretly... tell us about that. You were trying to support him, but yet the issue of dying was not discussed publicly?

DICK:
Well, we got a sense. Occasionally, his wife would discuss with my wife her fears that Ed would not survive. Families choose their own way to deal with cancer, and some are able to be very open and honest about it and face up to the issue of the end of life. I think they probably did do some planning, but I think between the two of them, there was a fair amount of denial. So their planning was just in case, I think. It was given that kind of heading. And so, as supportive as his friends were trying to be, we had to tiptoe around the issue a little bit. Around the fact that Ed's illness may very well be terminal.

ANDREW:
So how did you keep Ed positive, and make his quality of life as good as it could be? As a friend. What role did you play in that?

DICK:
Once Ed became homebound it was more difficult because he was far less active and certainly unable to leave his home. So what I would try, as my working schedule permitted, was to visit with him whenever I could. Stop by of an evening. Or if the need arose and there was nobody else available, I would make myself available to transport Ed to a therapy appointment or something like that. I have to give a lot of credit to my wife, too. Because we recognized that cancer was an illness that certainly didn't just affect Ed but it was affecting his entire family. So Mary was very solicitous of Ed's wife and tried to spend a great deal of time with her, comforting and supporting her.

ANDREW:
What kinds of things would you do? And what would you recommend to others in a situation where somebody is terminally ill?

DICK:
Well, I think, particularly in the case of the caregiver, that gets very intense. Particularly as the end comes nearer. Ed was hospitalized for the last couple of weeks. Then, of course, when he was receiving constant care, it was possible for his wife Barbara to have a little bit of respite. But when he was at home, and his son was in school, it was entirely on Barbara's shoulders to care for him. And it became increasingly difficult as his condition worsened. So what Mary would try to do, and I as well... When Barbara simply needed to get out, to shop or whatever, we would try to spell her at home with Ed. We'd try to spend some time with him so that she could do the sort of everyday things that she needed to do to keep up with her life.

ANDREW:
There's a heavy emotional overlay both in interacting with her and interacting with him. Talk a little bit about that. What kinds of things do you say in that situation?

DICK:
Well, that's the toughest part and I think that becomes very individual. I think it depends entirely upon the attitude of the patient. In Ed's case he maintained a good game face right to the end and felt, until very close to his death, that he was going to find a way to beat this thing. So it was difficult to do anything except support that. I didn't see it as our place as nonmembers of the family to encourage a change of attitude or a different way of dealing with the possibility that Ed may not survive. It was just a matter of trying to stay chipper, and find things to talk about. It became difficult for Ed to communicate at the end, so it got to the point where there was some note writing. It became very difficult to understand him. Toward the end he was having difficulty breathing. Finally, he was hospitalized because he could no longer take food by mouth. So it was a tough one to go through. And, I think, tougher by the fact that we couldn't have these discussions about setting the stage for his no longer being there.

ANDREW:
It's not fair to generalize, but I would say that we men don't always speak about our fears and our feelings as much as women do. Did you feel the need, or try, to talk to Ed at all about his feelings about what he was going through? Or were you taking your cues from him?

DICK:
Well, I tried to. And occasionally, I tried to elicit some expression of feelings. But you're right. They were more typical male-to-male kinds of conversations. We didn't get into those areas where we don't do as well as our female counterparts. In sharing feelings and really trying to work through and process those things. There wasn't a high level of emotional content in our discussions. I suppose, in retrospect, it's a little bit regrettable that we weren't able to plow some of that ground.

ANDREW:
Not that you'd ever want to be in this situation again...But for someone listening who might be in that situation, is there any kind of a suggested strategy? If there's the possibility of communicating with a friend on that level, that emotional level, is there a way to do it?

DICK:
Well, had I taken it upon myself to do it, it might have begun with a question along the lines of, "Do you ever find yourself thinking about what happens if I don't make it through this? And, in fact, have you discussed that with your spouse? Are you making any plans, and how do you feel about that?" It would be a kind of one-step-at-a-time thing, I suppose, to determine if your friend was willing to open up and make those conversational areas fair game.

ANDREW:
Dick, if that's something to try, what would you say is a place you don't want to go? The kind of thing that is not helpful either to the person, your friend who is terminally ill, or their wife, or their teenager. What would be something you think just doesn't help?

DICK:
Well, I guess I was perhaps more sensitive to this than I should have been, because it kept the door closed to what might have been some useful conversational areas. But I think it certainly would be a tragic mistake to ever write the patient off before they are ready to be written off. To conclude, and to have your remarks colored by your conclusion, that your friend is not going to survive.

ANDREW:
Taking away their hope?

DICK:
Exactly. For a lot of cancer patients that really becomes all they have and, of course, that's a cornerstone for the American Cancer Society. That we should, in fact, be talking about hope. This could lead to a whole other discussion, but hope for me boils down to responsibility. And taking some of those steps that each of us can take to keep our own selves healthy.

ANDREW:
Now, Dick, we discussed about you being a cancer survivor. You lost a dear friend like this, and you now continue as friends with that family as you go on with your own life. Has this experience of losing someone like that changed you at all? Or, being a cancer survivor yourself, were you already there?

DICK:
I think I was already there. But you know what it has done, Andrew? I think you know this because of our previous conversations, but I've been a volunteer for the American Cancer Society since shortly after my first bout with cancer, which was in the mid-1970s. I had begun to drift a little bit, and hadn't been as active with ACS as I had been. We have lost a couple of other friends in the last two or three years to cancer. I think those things, and Ed's death particularly, have galvanized in me the fact that I really don't have time not to be exercising my commitment, my deep commitment, to the American Cancer Society. So I've once again stepped up my volunteer activities, and I'm doing more work on behalf of cancer prevention. I'm speaking a great deal at Cancer Society events, and concluding that those are things that are within my grasp. They're within my power to do and I'd be remiss not to do them.

ANDREW:
And while we can't control whether cancer intervenes in our lives, or what road it takes us down, we can make this personal commitment. You do have control over that.

DICK:
Absolutely. Both to your own health and to spreading the word to others.

ANDREW:
Well, Dick, I know we appreciate your commitment.

Let me bring into our discussion Linda, from Lawrenceville, Georgia. Linda, I know you're a breast cancer survivor yourself and you're involved with an organization called Bosom Buddies, a support group and information service. I'm sure along the way you've helped a lot of people. And I understand that you've also had some friends that you've been involved with who you've lost to breast cancer. I understand this has taught you what you call "the art of dying." What does this mean?

LINDA:
Well, we as a species have a fear of death, and don't really understand the process. We don't really know the shutting down process of the body, and are so afraid of pain and of just not being here. I've worked with my friends closely, helping them plan their memorial service, or their celebration of life, which we usually have. One friend, especially, said "I've lived life consciously and I want to die consciously". She taught us, through meditation and some various books that we read, the art of dying. Dying with consciousness. Not dying in pain, but being alert, and having a part in the final say so of the next phase of life. And that's taken a lot of fear away, in many of us, of dying. We're not afraid to die. We don't want to die in pain, but we're not afraid to die.

ANDREW:
Let me learn a little bit about your personal situation, and let's talk a bit about one of your friends who succumbed to breast cancer. You're a breast cancer survivor. How long ago were you diagnosed?

LINDA:
I was diagnosed in November of 1992, so I'm almost seven years.

ANDREW:
With no recurrence.

LINDA:
No, thankfully.

ANDREW:
Okay. And I understand there's one particular friend who died of breast cancer, you were very close with Sandy. Tell us a little bit about Sandy's situation.

LINDA:
Well, Sandy wasn't much younger than me. She had been a nun for 17 years, and after much thoughtfulness she left the community, returned to Atlanta, and married an older man who was a professor in one of our colleges. They had no children, so they had no extended, no close family in the city nearby. Even though they were both very active in the city of Atlanta. Different groups, from working with the homeless, to the League of Women Voters, etc. And the last few years before she died, they belonged to the Quaker Meeting House in the area.

There was a nurse there who had read a book called "Share the Care." When Sandy started it was known she'd had her second recurrence after a bone marrow transplant. We felt it was time to form an extended family around Sandy and John, which we called Share the Care, and we went by the guidelines and parameters of the book that had been written. Sandy and John hand-selected 24 close friends that they knew either separately or together. We met in a large group and learned the guidelines of the Share the Care group. We learned from Sandy's dialog with us about her fears of dying and her thoughts on the subject. And of her decision that no more invasive painful procedures would be done to her. And we learned what she wanted from us. So, after filling out specified forms of what our talents were and what we felt comfortable doing, teams were formed.

Every week there were two teams, two people on a team. We would check in on Sunday night and see what was needed for the week. Sometimes they just needed a driver, sometimes they needed a dinner brought in. For the first year and a half we mainly took them dinners, or had them out to dinner, or interacted with them and then came together as a group. But the last two months of her life went as smooth as we had hoped it could be. It was very rewarding. There was always a team member at the house with Sandy. We all knew how to administer the morphine drops, and to attend to her needs, and attend to the home, whatever was going on. So if John went to bed, Sandy had somebody sitting and meditating with her. And she had guidelines of how, when she died, she wanted that particular moment to go. Whichever group was on duty, whether it was after work, late at night, early in the morning, or whatever, we did the meditations that she wanted, and waited for 30 minutes before we called the hospice nurse. Then two weeks later we had a beautiful memorial service for her. It was a situation you don't want to be in, but it's one that when you're in, you gain so much. Your life is so enriched by the process that it helps you with your own decision.

ANDREW:
Linda, tell us, how old was Sandy at the time of her death?

LINDA:
She was 55.

ANDREW:
And she'd been dealing with breast cancer over many years?

LINDA:
I'd say four and a half years.

ANDREW:
And you mentioned that this group formed a year and a half before her death. Was it clear at that time that this was terminal and that she would not be living a long time?

LINDA:
Yes, it was.

ANDREW:
I wonder if you'd mind sharing something, if you don't feel it's inappropriate. You mentioned that many of us, I would include myself, have this fear of dying. When I think about the moment of death, or the minutes leading up to that, it seems very scary. I think I have to come to my own peace with that. Were you there yourself when she died?

LINDA:
Actually, she died soon after I left.

ANDREW:
What are you aware of, from what others told you, of what those last moments were like? And are there some teachings in there for others?

LINDA:
Well, there are. I'm not sure I have all the processes down, but there is a cycle of shutting down that the body does go through for a period of days before it actually succumbs. You have shallow breathing, called apnea. You lose the ability to eat or digest food, even if it's liquid. The lack of urination and elimination of food products...some pain can build up in the abdominal wall from that, if not swelling and bloating. The liver will shut down, the kidneys will shut down.

ANDREW:
So, during this process, what can you do that's helpful in knowing the wishes of this person who's slipping away? What interaction do you have with them? What's positive? You said a couple of minutes ago that it was a positive experience?

LINDA:
Yes, it was. Well, I have to say...We have to back up here. Each of us went through a learning experience with Sandy, and we used Dr. Stephen Levine's book of meditations for the dying, and "The Tibetan Book of Living and Dying." We did that, and met with Sandy once a week and meditated with her. She actually taught us some meditations that made her feel comfortable. Your hearing is the last sense to go, so we were always talking to her in a quiet voice, never saying anything threatening or scary. Just communicating with her. She'd be real quiet, and then you'd think she didn't hear. And then all of a sudden she'd kind of laugh or smile and say, "Now why did you do that?" You know, out of the blue.

But I do think you need to be aware of when the death struggle can take place. The shallow breathing, and the change of the skin tone, and temperature. But what's very important when the person is near death, and you know that they're not going to recover...At some point in time each family member needs to give that person permission to die. You need to verbalize that. Hold their hand and let them know they were loved, that they will be missed and always remembered. Let them know how they affected your life in a positive way. Whatever their religious background is, you speak to them on that level as far as, you know, "We know you're going to heaven." Sometimes we'd tease Sandy and say, "Oh, you're just going to be a feisty little angel up there," and she'd smile. But we did talk openly about that and I think that's important. Keep the secrecy away.

ANDREW:
But Linda, as much as it worked out in that experience with Sandy, you heard Dick a few of minutes ago talking about his friend who didn't operate that way. There are probably people like that, and people like your friend, and in between. You have a feeling that it is a better way to go. But for the patient dealing with cancer who doesn't feel comfortable facing the end, what do you do as a friend?

LINDA:
Well, for one thing, you don't say platitudes to them. You don't say, "Oh, you're such a trooper ," or "I'm so proud of you," or "You're really strong." They don't want to hear that. You let them know that you're there to listen, that you're there to let them cry. You're there to laugh with them. At moments when they feel like they can do some activity, you participate in it with them. You have to feel out the person's mood. And the family's wishes.

We've had the other side of the coin in our groups, too. I had one friend that died a year ago who was 44 years old, and her daughter, who was 16 at the time, didn't know her mother was going to die until 30 minutes before she died. And this is a woman that had been dealing with serious recurrence from brain to stomach to abdominal wall to bones, for four years. Actually, eight years. But the family did not tell the children that she was not going to make it. And afterwards the young girl talked to me on the phone and said, "How did you know Mommy was going to die?" They have had a very hard time. And I find fault with the family not preparing them that this could happen. So you keep upbeat, but I don't think you can candy coat the situation.

ANDREW:
So you feel that the child was not well served there?

LINDA:
No, oh no. Oh no. See, I'm helping with them now, the young boy and young girl. Sort of as a surrogate mother, because the father has emotionally and physically, in a way, abandoned the children. So they lost their mother and their father.

ANDREW:
I know of situations. My dad has dealt with it. My mother died of colon cancer years ago, and now my father's second wife is dealing with pancreatic cancer. I'm sure that there are people like this, older people, and this was the case with my dad...Where the feeling is that his wife would be better not to know the facts of even the diagnosis, or how terminal the condition was. From your experience as a friend, it seems like you're suggesting that there should be an openness and acceptance of what the real facts are.

LINDA:
Well, I definitely agree with that. Even with young children, you deal with it. Each person according to how you understand their personality, and their age, and what they're able to understand. I think when we hide information, either from ourselves or our family, it creates even more fear or more uncertainty as to what's happening to me. I think when you deal with realities and facts, you get a chance to make the most of your life. We really work hard with quality of life. Not so much with quantity of life. And I think if you don't tell the patient what their prognosis is, you're cheating them out of maybe some very happy, good times with their friends and their family, or their grandchildren, or whoever. I don't think that's fair. I think in some cases that's done to protect the caregiver, not necessarily the patient.

ANDREW:
So being protective, you're really not doing anybody any favors?

LINDA:
I don't believe so, no. But you have to understand, you have to know the patient. I mean if the patient's always been somebody who couldn't deal with realities and facts and hard core situations in any other walk of life, then they're not going to deal with it now. So you kind of have to lay back. But I could say almost everyone that I've worked with, over the last seven years, has wanted to know more. And wanted to have the knowledge of what was happening to their body, and why, and make the most of their time.

ANDREW:
Linda, there's one last thing I wanted to ask you before we meet our other member of our group. You had this team of people supporting Sandy. Yet what did you do to support each other? Because it's definitely very trying on you.

LINDA:
As far as the other members of the support group that Sandy was in, there were several of us here in the city. We met together on a weekly basis and we've always helped each other through recurrence, bone marrow transplants, pregnancy, in between treatments. You know, we've always been there for each other, we've had a strong bond. So we filled each other's cup up by listening, or crying together, and by reading and sharing of information. That's just how we've all been. Some of us have moved away from the city but we still keep in touch. We have another member now that's not doing well, but sharing, talking about it really helps. Dr. David Spiegel's written a book called "Living Beyond Limits." He has statistically proven that women who belong to support groups, breast cancer support groups, live 85% longer than women that don't. Because we do stuff, talking and sharing information. And Dick kind of touched on the differences, men versus women. I really find it sad men don't do that, because it does help so much. You learn more from each other, and you laugh together, and you cry together, and you share in the little bit of joys and the little bit of sadness. And once you share all that, it's not such a hard burden on yourself.

ANDREW:
Well fortunately in our conversations for the American Cancer Society, particularly with men with prostate cancer and now with other cancers as well, those types of conversations among men are happening.

LINDA:
I realize that. And you know, in the Atlanta area the prostate groups have come to us to model their group after what we've been doing. So it's kind of fun to see that interaction. But you know we could never get spouses to come. We tried to have spouses come and talk and share their emotions and they don't want to do it. The men did not want to do it.

ANDREW:
Well, hopefully that can change over time, and it seems like you're ready to play a role.

ANDREW:
Let me bring in the third member of our discussion, Kate, who's with us from Palmyra, New York. Kate, your story is not such a sad one. Although I would say Linda did not really portray hers as sad. You have someone in your life very dear to you-Michelle. She was very, very sick with cancer but is with us today. You certainly had to confront those issues of being at death's door, and all the worries that go with it. Tell us a little bit about Michelle's illness, how you two communicated, and how you were a help to her.

KATE:
Well, I have an update for you. She was diagnosed with leukemia in 1994, had a bone marrow transplant in December of 1994. Then the year after was the whole recovery, going into remission, sailing through to good health. However, four years later, this March of '99, she had a relapse. All the doctors that she was conferring with conferred with other doctors, and they had not found a case anywhere else in the country with her specific kind of leukemia where anyone relapsed four years out after transplant. So it was "here we go again," but this time it seems almost worse because we thought she was cured the first time and now it's back. That brought a whole new set of emotions and duties for me as the caregiver in her family.

ANDREW:
What's the prognosis now?

KATE:
Well, now she's in remission. She was possibly going to have to go through more treatment. She was going to go to an experimental treatment, as opposed to the chemotherapy that she had been doing. But she had some advanced tests done that came back negative for leukemia so now they're just going to monitor her very closely, And do some more tests more frequently than they had been over the past four years.

ANDREW:
And Michelle is how old?

KATE:
33.

ANDREW:
So, you've been through this once and now a little bit again. So tell us how you support Michelle as she worries about whether this is a death sentence. Though so often now, cancer is not. And, let's talk about the transplant and the very aggressive treatment. How did you support Michelle through that?

KATE:
A lot of it was daily visits. It took a toll on me, for sure. But at that point nobody knew what to expect or what was going to happen day to day. So it was important for me and other members of her family who could get there to be there every day. And it was just sitting there talking with her if she wanted to talk, which a lot of times she didn't. You know, we talked, we laughed, sometimes she'd just try to sleep. She'd want to listen to stories. Whatever she needed. One of the hospitals she was in before the transplant was short on nursing staff, unfortunately. So a lot of it was just running to the nurses' station, telling them what she needed, relaying what she was going through to them, serving as a go-between. After the transplant it was just being there, waiting, waiting, waiting. She was in actually very good spirits, so I think that was easier on all of us.

ANDREW:
Did you discuss at all what if the transplant didn't take? Or if the procedure of the transplant was so wearing on her that she couldn't withstand it? Did you confront any of those issues?

KATE:
As I remember today, I don't really think we did. But this time in March when she went back in, in '99, it was so bad. Those issues came up. She actually asked me to sit down with her and draw up a will. And we did touch on this issue of making it through. I think, as opposed to the transplant, we were in a state of "this can't be happening, this really isn't what we're going through."

ANDREW:
And I should mention that you're an attorney. So when you drew up the will for somebody who's so close to you, and you went through the "what if" details, how did you deal with that?

KATE:
I think I almost switched into a mode of, "Okay, this is what she's going to need if she does die," as opposed to the emotion of, "Oh my goodness, I can't believe she just asked me for a will. That's so sad." No way I would even think about it. It was, "Well yeah, she will need one in place, and she'll do it now just in case." It wasn't like this is a road map for what's going to happen because she will need it. It was let's have it in place, leave it on the desk for now, and file it. So I just sat there with her and went through and listened to what she wanted.

ANDREW:
Now, Kate, if I'm correct, you've had a job with the State of New Jersey's Attorney General's office. A pretty demanding job. Then Michelle gets so sick, and you want to be there for her. And then, years later, sick again. How do you handle this with the rest of your life, both emotionally and logistically?

KATE:
And to top that off I had just changed jobs in December, so it was very new. And a very busy time in the unit that I was in. I would call in and say, "I'm at the hospital, I can't make it into work." Kind of whatever is going to happen to me at work is going to happen. Setting my priorities, of course, I had to be out of work. I was very fortunate to have an understanding supervisor who said, "Don't even worry about calling in. Call me at home Sunday if you'll be in Monday." So I went in the first week just to clear my desk and to check in. It was overwhelming, the amount of loose ends I was leaving hanging at work. But I was able to just say, "I can't get to these projects. These are what are left open. I have other things to worry about." And I was out of work for a solid week the first week she was diagnosed. I just dealt with that. I didn't even go in to work or think about it.

ANDREW:
And they understood that you were really her key caregiver and you felt that this was a very prime responsibility for you.

KATE:
Yes, absolutely.

ANDREW:
Let me ask Dick and Linda, too. How do you balance your other relationships when you have someone close to you who you're supporting? Your other friendships, the rest of your life? Linda, you're in this support group, and Dick, you said you've had a pretty demanding job. Yet you've lost your friend, and others, too. How do you compartmentalize things? How do you do that? Dick, you want to start?

DICK:
Sure. I would agree with Kate's observation that when these circumstances arise in people's lives, with some exceptions certainly, but I think most employers are pretty understanding about that. They're willing to be somewhat flexible. If you state the case openly and honestly and tell them what you're trying to do. And that a family is really in crisis. Particularly if there isn't anybody else, if you're kind of in a position of primary or first secondary caregiver. I think you can find time or make time to make it happen. Give up some other things, because that priority rises to the top.

ANDREW:
Dick, just emotionally, though. None of us are clergy. Clergymen are more experienced at visiting the sick. And also in their duties in performing a wedding or helping after a new baby has been born. All the ends of the life cycle that come up as we deal with illness or with great joy. But we don't have that training. So for you, you'd visit your friend and then have other, hopefully brighter things going on in your life. How do you separate them? It would seem like it could be an emotional roller coaster.

DICK:
Oh, I think it can be. It's certainly important. I'm very fortunate in that my wife and I were very much in this together. We were friends as a couple with Ed and his wife. So when either Mary or myself or both of us would spend time with them, as the end of his life drew near, we could then separate. We could come home and have each other to process this with, and talk about it, and do our crying together at home, and share the sad moments. Then get ourselves braced for going back and helping out some more the next time around.

ANDREW:
And also being totally there for other aspects of your life. I know you and Mary are grandparents. You were still able to enjoy that.

DICK:
Well, that actually helped, Andrew. I think that because we had this new life in our lives we could see the bigger picture a little bit better. That lives do indeed begin, and they do indeed end. So we were seeing the marvel of that transition. And as Ed's life was coming to an end, there was a great deal, really, to celebrate about his life. He had had a good life, he made others happy, and he will be remembered very, very warmly. But at the same time as his physical presence is leaving us, along comes this brand new person. My grandson was really not very old when I lost my mother, too. Not to cancer, but I lost my mom last year. I saw this same thing repeated again because my little grandson had gone to see her. Seeing the two of them together, you know, cemented that even more for me.

ANDREW:
Linda, what about for you? You have this support group, and you've dealt with breast cancer yourself. You have other friends who've been affected by it. How do you draw strength and celebrate the good times, even when you have a friend who may be terminally ill? And despite the fact that you talk about the celebration of life, and it being positive, it still is not upbeat, I don't think.

LINDA:
No, no, it's not. You do have your down times, but you have to have in your life a sense of balance. I also have a grandson that has been a great joy to me as far as interacting with him. I concentrate when he's here solely on what he wants to do, and we do things together. I have another interest that has nothing to do with cancer that brings me a lot of creativity and joy. You can't always keep giving and giving and giving, I found after a while. You have to take care of your own health, and get rest, and be strong.

ANDREW:
Kate, I imagine all these trips to the hospital during the bone marrow transplant, and the worry that goes with it...and you said that you were sort of a junior nurse a bit. How would you take care of yourself?

KATE:
Well, one of the first weeks I did get a little sick. I got too run down. So I listened to my body and I just tried to sleep more, eat regularly, but it was almost like autopilot. I just knew I couldn't get sick again and I did whatever I could. After the transplant, when we knew that she was in the recovery mode, I would take a scheduled day or evening off. I needed to go running, which is what I do for recreation.

ANDREW:
Is that something that you would advise others who are caregivers? That you've got to find time to take care of yourself? That otherwise you're diminished in your ability to support your friend?

KATE:
Oh, I would strongly recommend it. I like the analogy to the well. You have to have something there to fill your cup, absolutely. It keeps you sane, it keeps you healthy, it gives perspective. Absolutely, you have to think about yourself and take care of yourself. Otherwise you can't give.

ANDREW:
We talked about communication with the person who's sick, and wondered what your view is. Michelle had cancer, dealt with it one time, and then had an apparent recurrence. You said she asked you to draw up a will. Beyond that, what kind of image do you have of the future? Have you discussed those kinds of things very frankly, and just how have you dealt with it?

KATE:
I think we have discussed them because she was more scared this time. She really thought she was going to die, and I think she was being more practical about it. We put a lot of things in joint names so just in case something did happen, there were legal rights of survivorship, that kind of stuff. I didn't really like talking about it with her. For instance, we have a house. I wouldn't say, "Oh, I'll sell the house," or "I'll live there or get someone else to move in." I didn't bring that kind of thing up. I would just let her talk and she would say she's so sick she doesn't think she's going to make it. I think we just dealt with what we needed to do up until that point. You know, like I said, with putting things in joint names. I could say, "Don't worry, everything will be taken care of."

ANDREW:
And how do you continue to give Michelle hope?

KATE:
That's kind of easy because she's now so optimistic and upbeat. Doctors and nurses didn't think she was going to make it. And to see the turnaround, and the hair is coming back. She's going back to work part time now. Those kinds of physical signs. And she's feeling so good, she's just really upbeat about it.

ANDREW:
You've seen her come back before, and let's acknowledge the belief that she's coming back again, and you can put this behind you.

KATE:
Yeah, yeah, definitely. But I saw the symptoms in March when she was relapsing, when the cancer was coming back, and it didn't even cross my mind that it would be cancer. She has a high fever, well it's...she was starting to get rheumatoid arthritis. It's all these new things that I don't know anything about. But I never thought of leukemia until she was actually in the emergency room and moved up to intensive care. One young resident was there that night and said, "Well, it looks like leukemia." I just broke down right there and said, "What are you talking about? You're just some young resident. You don't know what you're talking about. She doesn't have leukemia, she's cured."

ANDREW:
Well, that goes back to what Linda was saying earlier. No matter what any of us have, it's not quantity of life but quality of life. It seems like now you and Michelle are really working on that again.

KATE:
Oh, definitely. Vacations and planning and just everything.

ANDREW:
Well, Kate, what advice would you give as we look for final thoughts from each of you? What advice would you give to someone who has a very dear friend, somebody very close to them, who's dealing with cancer? Whether it's a cancer that is going to shorten their life, according to medical opinion, or not. So that they can be as supportive as they can and also get through it themselves.

KATE:
I think visiting and spending time with someone in the hospital or home who is ill is very important. And remain upbeat in their presence. To take care of themselves. What happened to me, I had to take a day or two off a week and let them know that I'll be back on a certain day. Maintain yourself, keep happy for yourself, but just be there for that person, for whatever their needs are. And be encouraging. Whenever she would say, "I'm not going to make it," I would never say, "No, you're not." Of course, that sounds silly, but I would never say, "I don't think you are." Whether or not I was feeling it. Just stay upbeat and say, "You know, you'll get through this. We'll deal with it."

ANDREW:
But it doesn't mean sugarcoating the experience they're having.

KATE:
Absolutely not. Right. Absolutely not.

ANDREW:
Dick, what about some final thoughts from you. You were dealing with your friend, his wife, and their child. What advice would you give in supporting the person who's the patient, and also the family?

DICK:
Well, I would certainly echo what both Linda and Kate have said. That's good advice from both of them. But we have to acknowledge that all of us have busy lives, and there are choices that we have to make. I think that when you do have a friend in crisis, if you're waffling between that decision to go play golf, or go spend some time with your friend, I would advise people to make the choice your friend. And to make that commitment in time. For the time being, put on the shelf some of those other activities that you can do anytime. Because, particularly in the cases of terminal cancer, these are once-in-a-lifetime opportunities. I would also say that, as difficult as it sometimes can be emotionally to try to be part of a support system for someone who is in fact dying...We all, and Kate may have said this best, we all come away from these experiences having gained something and having grown and found our own lives enriched in some way. Even in the dying process. And perhaps going through that process with someone else takes some of that fear and mystery and sting out of the end of life.

ANDREW:
And this goes for supporting the person with the cancer, as well as their loved ones in their family, too.

DICK:
Sure. Then, of course, the support of the loved one goes on afterwards. And we were very much involved, in Ed's case, in the funeral arrangements, and then trying to stay close to Barbara after she'd lost him.

ANDREW:
And Linda, some final thoughts from you that you would like to leave with other friends of people dealing with cancer, or families dealing with cancer.

LINDA:
Well, I think if you are the caregiver or one of the caretakers, you need to learn to prioritize the daily duties in your life, or reprioritize them. And I stress the sense of balance in your life. For instance, I would work and then we'd go and spend time in the early evening shift with Sandy, and someone would relieve me at midnight or so. Then I would go home, and I would still get my rest and be ready to face the next day. Also, you need to take a break now and then. Even if it's just a half a day off to go window-shopping or go to the park or just...

ANDREW:
Like Kate, going running.

LINDA:
Right. You need to do "being," and the person who is ill would want you to do that, too. Because, you know, you come back with a different perspective and good feelings. And I really emphasize the quality of life. Make the best of the moments where they're lucid and can communicate. Have dialog with them. Because you don't want any "what ifs." I think the main thing to think about is, how would you want someone to treat you or talk to you if you were in that position? You know, do unto others as you would have others do unto you.

It's a great gift you give yourself when you take care of someone and give back to the community, if you're a survivor of cancer or any other terminal disease. If you are a survivor, you want to give back. You have reprioritized your life and you have a whole new set of values. You're never the same as you were before cancer. You're a better person afterward. As negative as the cancer experience is, I truly believe that in most cases, it's been a positive force in each of us, in our lives.

ANDREW:
And one you've used to help others.

LINDA:
Right. And that's a good way to work through your grief. To turn around and help others and give back. Learn from the lessons and share it with others. There are so many scenarios I've been involved with that I almost feel like no one person has a smooth life. If somebody tells you that they've had no ups and downs in their life they're lying to you. So having the cancer experience and caring for others teaches you how to handle other aspects in your life. I truly think it's a growth process.

ANDREW:
Well, Linda in Georgia, and Dick here in Seattle, and Kate in New Jersey, I want to thank you for sharing your personal insights from dealing with someone close to you in helping them with cancer. Whether it meant a shortened life, or it meant just a part of the cancer adventure, which sometimes is negative but sometimes is not that negative at all. And Kate, I hope with Michelle it goes on to a long and happy and healthy life. We wish you that. Thank you for sharing your comments with us. For the American Cancer Society's Cancer Survivors' Network, and from our HealthTalk Interactive Studio in Seattle, I'm Andrew Schorr.