One on One Interviews: Caregivers

Char	Val username: valerie42068 Val's Web page	Dick username: dickl Dick's Web page	Scott username: sbischke Scott's Web page

Char's Story: Caring for a Close Friend

Wendy Harpham:
Hi. Welcome to the American Cancer Society Cancer Survivors Network®. I'm Dr. Wendy Harpham, your host. In this program, I'll be talking one-on-one with four cancer caregivers. As a cancer survivor myself, who has cared for family members with cancer, I'm pleased to speak with our guests about: finding moments of joy while dealing with the challenges; playing a proactive role in treatment and recovery; creating goals that are realistic and rewarding; and offering reassurance in spite of a tough reality.

I'm speaking with Char, a caregiver from Iowa who is 56 years old. Char is married and has two adult daughters. Hi, Char.

Char:
Hello.

Wendy Harpham:
Thanks for talking with me today.

Char:
You're welcome.

Wendy Harpham:
You took care of Jo, a longtime family friend, when she had a second bout of lymphoma. Jo had lost her husband just soon after her diagnosis of recurrent lymphoma, and since she lived alone in the country, she was quite isolated.

Char:
That's right.

Wendy Harpham:
You took her to doctors' appointments and sometimes stayed with her during her hospitalization. You prepared her meals and provided good listening support. And you also talked with her about nutrition when she wasn't eating as well as she needed to. How's Jo's health today?

Char:
It appears to be good.

Wendy Harpham:
So she's stable?

Char:
Yes.

Wendy Harpham:
And I understand she's working full-time.

Char:
Correct.

Wendy Harpham:
But you still go with her to her doctors' visits?

Char:
Yes.

Wendy Harpham:
Now you have more than the average experience in caregiving, because you work as a parish nurse.

Char:
That's right.

Wendy Harpham:
Offering spiritual support to people in your church.

Char:
Correct.

Wendy Harpham:
Can you share with us what it was like when you first learned that Jo's cancer had come back?

Char:
It was a shock, and I was saddened. And I felt badly for her, because I knew she went to her check-up--it was her year check- up--by herself, feeling that there was no problem. She was feeling well and had no indication that her cancer had returned. So she was by herself when the physician gave her the diagnosis.

Wendy Harpham:
So she was shocked, totally shocked, and you were shocked. You were just not prepared to get bad news.

Char:
Right. Absolutely. Because she had, like I said, she had no indication. She felt very well, looked very well. So there was no indication that there was a problem.

Wendy Harpham:
Do you remember what thoughts went through your mind and what feelings you experienced?

Char:
I felt fearful for her, recognizing that a recurrence was not a good thing. Recognized that she had a tough road ahead. And wondering what the treatment would be this time, and what the prognosis and outcome would be for her. And concern for her and her feelings, and her children and her family in general.

Wendy Harpham:
Was there anything in particular that helped you accept the reality of her recurrence and deal with what was happening to your good friend?

Char:
I'm a person who usually, in my lifetime, accepts things as they come. Sometimes it takes me a little while to think about it and pray about it. But usually I accept what I know is happening, and then think about how we're going to deal with it and what are we going to do.

Wendy Harpham:
So, you're a very reality-based person?

Char:
I think so. I try to be, yes.

Wendy Harpham:
Was there anything different about it being such a good, close friend and such bad news?

Char:
I think always, when it's someone close to you, that I felt more fearful and more concerned than if it was just an acquaintance. Because also, being a nurse, I knew what she was facing. How difficult it must be to have gone through the original diagnosis, gone through the treatment, feeling that you've had a cure or at least a remission at that point, and to feel comfortable and relaxed about that, and to unknowingly be faced with a recurrence that you had no idea was coming.

Wendy Harpham:
And if the recurrent cancer wasn't traumatic enough, your friend Jo had just lost her husband unexpectedly.

Char:
Right.

Wendy Harpham:
How do you think that affected your emotions when thinking about your friend?

Char:
I think when that happened, my first emotion after the shock and the sadness of the situation was: how could all this happen to one person? It's not fair. And questioning, you know, was God there? And why did this happen to Jo when she had enough to deal with, with the recurrence, without now having to deal with the death of her husband, who was very, very supportive of her during her diagnosis and treatment and was always there. Jo never went to treatment alone; Myron always went with her. So she really lost a rock. And they had an excellent relationship, were not only husband and wife but were friends. And so she had really lost a strong support person with his death.

Wendy Harpham:
How did that make you feel about your role in her illness?

Char:
I had recently retired, in fact, just the week before her CAT scan. I retired from my hospital nursing job. And so I felt thankful that I was going to be able to spend time with her and be available for her, because previous to that, I worked full- time and would not have been able to spend the time that I hoped I would be able to spend with her, now that I was retired.

Wendy Harpham:
Now, as your friend went through her treatment, the ups and downs. And she had a bone marrow transplant, is that right? Or a--?

Char:
Stem cell transplant.

Wendy Harpham:
You know that's pretty grueling, and it must have stirred up a variety of emotions in you to watch her go through the baldness or, if she had nausea and vomiting, or just weakness. Share with us some of the emotions that you had caring for your friend.

Char:
Before she went for the transplant, I was fearful of whether she would have the stamina to get through just the physical grueling part of it. I'm a nurse in a small community, and so I had not experienced stem cell transplants. Wasn't sure what that meant, except that I knew they would blast her with massive chemotherapy and kill everything in her body, hopefully the cancer, and then try to bring her back from that. And so I was fearful for her of how she would tolerate the symptoms and the side effects that would go on. And then of course I was--had some concern about whether I could be supportive enough and be there for her when she went through that situation.

Wendy Harpham:
So, even though you were a nurse, you still had doubts about your ability to support her through intensive treatment?

Char:
Yes. And I know that she looked to me, being a nurse, to have the answers, to understand what was going on, to be able to explain to her what was happening and why it was happening, from both kinds of things, too. And I wasn't sure that I would have that knowledge, because that is an area that I was unfamiliar with.

Wendy Harpham:
So how did you get the confidence to help her?

Char:
Well, the thing that was amazing to me is, in the treatment, they really treat the patient for their side effects. And so the side effects are at minimum as much as they can be. And so it wasn't the horrible, terrible experience that I envisioned that it would be. I mean, it wasn't pleasant and wasn't enjoyable. But they were able to keep the nausea and the sores in the mouth and the fatigue, and those kind of symptoms at the bare minimum so that she wasn't suffering as much as I thought she might.

Wendy Harpham:
And that helped you?

Char:
Yes, yes.

Wendy Harpham:
You mentioned fear a lot. Were there any other emotions?

Char:
I think the anger--the anger that I felt was when Myron died. After knowing she had the diagnosis. And then with the death of her husband. That was when I really was upset and was saying, "God, why are you doing this to her?" You know, she has enough. And she needed Myron so badly and depended on him so much. I just couldn't understand, why did that happen? You know, why was that allowed to happen? So I think questioning: why? I don't know if it was absolute anger--but not understanding, and wondering, why would this happen to someone?

Wendy Harpham:
Did you ever work your way toward an answer you could live with?

Char:
Yes. Again, I do a lot of thinking and working through things. And my belief is that my God is a loving God, and that God doesn't make bad things happen to good people, necessarily. And so I have to talk to myself and work myself through that, and recognizing that people die suddenly, people get cancer. And not necessarily--my belief is that God gave that to someone, or that God said, "OK, time for Myron to die. I'm taking him away from Jo." And so that's how I worked through that, that it was part of life.

Wendy Harpham:
What was God's role for you in Jo's illness?

Char:
For me, it was just the strength to know that God is there, God did love us, would be there and give us what we needed to get through that situation. Whether it was strength, whether it was belief that he was there, whatever. That God was with Jo and with me as we went through that, and gave me the strength and sometimes the words that I needed to help Jo.

Wendy Harpham:
You describe yourself as being the caregiver to Jo. You were there to support her. Who supported you?

Char:
Most of the time, I think when I saw the strength that Jo had and the ability for her to deal with whatever was going on, on whatever particular day, it gave me the strength that I needed. And I was doing something that I really wanted to do. I felt like I was helping her through that situation, and that was enough return for me. And, of course, my husband is very supportive. Helping Jo, I drove to Iowa City every week and stayed there three days with her, and drove home. And it was in the winter in Iowa. I remember the first--the very first night I was to go, they were forecasting an ice storm for the next day. And I was afraid I wasn't going to be able to make it. And so I said to my husband, "I really would like to go tonight. I'm afraid if I wait until morning, I'll be driving in an ice storm." And I said, "But I really don't want to travel to Iowa City by myself." And so he went with me, and we drove down that night. So he was always very supportive of what I was doing, even though it interfered with the time that I had to spend at home, because I was going down there and spending two nights and three days away from home for the duration of her hospital days.

Wendy Harpham:
Did you share your fears about Jo with your husband?

Char:
Some. Actually, I felt pretty comfortable during the time that she had the transplant, and didn't have a lot of concerns, because things were really going better than I ever anticipated that they would.

Wendy Harpham:
The anticipation was worse than the actual event.

Char:
Right. Exactly, exactly. I was actually amazed at how well she did through that experience. And so, what I had envisioned was going to be going on didn't, and so the situation was easier for me to deal with.

Wendy Harpham:
What about after it was over? You know, people like to think, "OK, less treatment. I'm discharged from the hospital. Cancer's over. Cancer's behind me." But, as I'm sure you learned, recovery is an ordeal also.

Char:
That was probably more of an ordeal for me than the actual transplant.

Wendy Harpham:
Tell us why.

Char:
Because Jo had a lot of emotional concerns, fears, and those were things, those are harder to deal with sometimes than physical things. I mean, they were giving her medications for the nausea and for the sore mouth and for the diarrhea and those kinds of things that went on. And those were helping her. But the emotional fears and concerns aren't always easy to take away.

Wendy Harpham:
And I think people are more prepared for having physical problems.

Char:
Mm-hmm.

Wendy Harpham:
But people don't talk quite as much about the anxieties, the fear, sleep interruption, that sort of thing.

Char:
Jo has always told me that she really feels comfortable with me to share how she truly feels. And so there was lots of stuff that she was telling me that were hard for me to deal with. And it was harder for me to see her fearful and scared and hurting and wondering about the future than it was to see the physical aspects of--

Wendy Harpham:
Because you couldn't fix it.

Char:
Right. And that, being a nurse, and the personality that I am anyway--I'm a fixer.

Wendy Harpham:
So how did you feel with her suffering that was not easy to fix?

Char:
I felt sad. And that probably--those were the--that was the time that I was more emotional than the actual physical things. That I cried because of her fear and her concern and my wonderment: am I helping her, and am I supporting her? Can we get through this period of time?

Wendy Harpham:
How did you deal with your emotions--the sadness or the sense of inadequacy for these sorts of problems?

Char:
Well, sometimes, again, I did a lot of praying. I did cry if that's what I felt like doing. And I would ask Jo when we were talking and visiting, you know, "Have I helped you? Is this helping you? How do you feel about this?"

Wendy Harpham:
And what did she say?

Char:
She would say "yes." But I could tell that I wasn't always able to alleviate her fears. I knew that talking through that was helpful for her and that she needed someone to talk to, because she would say to me, "I don't know what I'd do if I couldn't tell you how I feel, if I couldn't talk to you." And I felt very intuitive to her. If we were talking on the phone--I know one afternoon, she called me, and usually I wouldn't say, "How are you? How do you feel?" because I think they get tired of that. People saying, "Oh, how are you?" I'd just say, "Well, what's going on?" or "Oh, nothing." And I could always tell by her voice if something's bothering her.

Wendy Harpham:
Did you or Jo turn to any professional help in dealing with the emotional issues of treatment and recovery?

Char:
I didn't have professional help. I did visit with my pastor about some of the feelings and some of the discussions that we were having, and looking for reinforcement and support from him.

Wendy Harpham:
How helpful was that for you?

Char:
That was very helpful to me. To have someone say, "Yes. That sounds good. That's probably what I would say." Jo did a couple of counseling kinds of things, but not a lot. She did some.

Wendy Harpham:
Char, what do you think the experience of caring for your good friend taught you about yourself? Because, again, it's different to be a nurse as a professional and to care for a loved one.

Char:
Well, one of the things I learned about myself, that I kind of knew already, was that I am a fixer. And it was hard for me not to be able to fix everything for her and make her life happy and get her feeling some encouragement. And that part was hard for me, because I am a fixer. I wanted it to be OK. And I wanted that part to go away. And I learned that it wasn't going to go away, that we had to look at it and talk about it and live through that part.

Wendy Harpham:
What did you learn about your friend, and about your friendship?

Char:
Well, I learned that she's a very strong, strong person. A very positive person. Unbelievable strength, I guess, is the biggest thing. I looked at what she went through, and some of the things that she talked about with her emotions, like wondering, would she live to see her son graduate? Would she live to see her daughter's wedding? And thinking, how could you? How could you? All the things she went through. I just couldn't believe the strength she had. Because I thought, there's no way that I could deal with what she's dealing with and be able to have the strength that she has. And I guess that's the biggest thing. And then since, doing well and being back to work. To watch her truly enjoy life and live life to the fullest, even though we still talk about wondering, will I be here next year? Will I be here two years from now? You know that those concerns are still there, but I see the incredible strength that she had.

Wendy Harpham:
And what about your friendship? How do you think going through such a trial shaped your friendship?

Char:
It grew. We had--through the years as we got busy, and she had children, and I had children. And our friendship, as far as being together and doing things together, kind of separated a little bit and wasn't as strong as it had been. And it was strengthened again through going through this together as friends, and physically being together. And we've done fun things, too. You know, we try to celebrate when there's something to celebrate and have a good time, and get away and not think about cancer.

Wendy Harpham:
So just a tremendous appreciation of life.

Char:
Right. Exactly, exactly.

Wendy Harpham:
Being the caregiver, what did that teach you about life?

Char:
It taught me that we need to enjoy each and every day, and each and every moment of our life. And that life is very precious and very short. With her husband dying, you never know when you're going to have someone. So I guess I learned to live each day to the fullest, and appreciate it and enjoy it, and take everything I can get from it.

Wendy Harpham:
Char, do you think there are any special difficulties that one faces when being a caregiver to a friend, as opposed to a spouse or a child or a parent?

Char:
I don't know that it's different, but I think the thing that was, because she was my friend, sometimes I didn't know how this friendship would weather if I had to tell her something that maybe she didn't want to hear. But I tried to do that and tried not to sugar-coat what was going on. You know, if she would say, "I'm afraid I'm going to die. I'm afraid I'm not going to see my son graduate." And I would try to be very open, very honest, and say, "You may not. But none of us knows whether we will be here." So I think being the friend sometimes made it more difficult. I was lucky, I guess, that things went well and we never had particularly bad news that we had to deal with after the original recurrence and treatment kinds of things, as we've gone to physicians' visits and follow-up treatments and CAT scans and those kinds of things. Of course, every time that we go for a CAT scan, she's very nervous, very anxious. I try to be very positive and supportive, but in my mind I'm thinking, what am I going to do if they come in and say, "It's back."?

Wendy Harpham:
How do you feel about your confidence in being a caregiver, should more medical problems arise in the future?

Char:
I'll be there and I think I can manage that. I hope I don't have to. I hope things are going well, but I also have the concerns and fears: is it really gone? What's going to happen when she has a CAT scan? If she's having some kind of physical symptoms, wondering, is something going on?

Wendy Harpham:
I'm curious if caring for her through her trials has made you more or less fearful for yourself or for your husband?

Char:
Probably not. I tend to think that I sometimes am a person who is overly fearful of cancer, just because of my profession and my observations--and my observation of life, you know, of other people that it has touched. But I don't think the situation has made me any more fearful. I don't think I'm cancer-phobic because of it, or I just know that that's a possibility.

Wendy Harpham:
You know when you talked about recovery actually being more difficult in certain ways than going through the rigors of treatment, I wrote a book called After Cancer: A Guide to Your New Life, that covers the medical, practical and emotional issues of recovery and long-term survivorship that you might find helpful, because it talks about all these things. Before we close, any last thoughts about being a caregiver for a friend?

Char:
I guess the thought that I would have is that I did try to take care of myself during that time, so that I could be there. And recognizing that you can't fix it. And sometimes not having any words to say, but just being there. And not being afraid to be physical with that person, to give them a hug, to hold their hand, just to be there. Your presence sometimes is all that's needed. I am thankful that I was able to be here. It's not an experience that I would like to live through again, but I am thankful that I was there, I was able to do it. I think I was helpful to Jo and made the whole situation and experience for her somewhat easier to tolerate and deal with.

Wendy Harpham:
Oh, your words are so helpful.

Char:
I tell Jo that I'm honored to have been able to do it. And I really am. I mean, I think that's an honor to be able to have someone there at all, and be totally open to you and surrender their thoughts, their feelings, their fears to you. To trust you enough, trust me enough to do that. So it's been an honor for me to do that for her.

Wendy Harpham:
Char, thank you so much.

Char:
Thank you.

Val's Story: Taking Care of Her Dear Father

Wendy Harpham:
I'm speaking with Val, a 32-year-old caregiver from New York State. Val is single, with no children. She's engaged to be married. Hi, Val.

Val:
Hello. How are you doing?

Wendy Harpham:
Val, your 57-year-old father, Robert, was diagnosed with cancer of the larynx in 2001. Apparently his voice had been hoarse, so he went to an ear, nose and throat doctor and had some tests done. The evaluation led to a biopsy that showed cancer of the larynx, or the voice box. He was referred to a radiation and chemotherapy doctor, both of whom recommended removing the voice box, but instead he chose to be treated with radiation therapy. It sounds like that was pretty rough.

Val:
Yes, it was. We were torn between what we could, what we should do. When you are in a position like this, you do not know what to do. So you try to get help that's out there, but it's not much. And time is of the essence.

Wendy Harpham:
You wanted to save his voice, so you were hoping that radiation would cure the cancer and preserve his voice. And his treatment was complicated. He got dehydrated. He had trouble eating and swallowing, and at one point actually had trouble breathing because of all of the swelling in the throat.

Val:
Yes.

Wendy Harpham:
They had to place a trach tube. I understand that his cancer did not go into remission from the radiation. And again, removal of the voice box was recommended?

Val:
Yes, after several months. It was eight weeks of radiation and then towards the end, he did great until the end. And that's when things started having a lot of problems. Last episode was the breathing, on top of the not eating, the losing a tremendous amount of weight.

Wendy Harpham:
So it was about nine months after that initial diagnosis that he actually had his voice box removed?

Val:
Yes, it was August--this month--a year ago, this month.

Wendy Harpham:
And he was sent home, and basically you were his caregiver.

Val:
Yes. Unfortunately, it was a very--he went on a Monday to have the operation. I think it was like a holiday weekend. Six days later on a Saturday, no less, I was told that--I was going for my normal routine visit, and I was told that he would be coming home that day. On a Saturday, holiday weekend. Not knowing what to do. And prior to having somebody come home with this type of operation, you needed nurses to come in, just to check my job, which I didn't know nothing about taking care of a patient who had to be fed through the stomach.

Wendy Harpham:
Well, you know what? We're going to get into that when we get along with our discussion. Why don't we start at the beginning?

Val:
OK.

Wendy Harpham:
Val, could you share with us what it was like when you first learned that your father's cancer--that your father had cancer?

Val:
Well, when we noticed that his voice was changing, and you don't think that it could be cancer. That was the last thing we thought. Sore throat, you know, you think of everything else but the word "cancer." And to find out that it was cancer, it just, it was like life stopped. And then it was to be--I had to be strong, not only for myself; to take care of my father I had to be strong. We had a tough battle ahead of us. But it was emotionally draining from beginning to end.

Wendy Harpham:
And you had some shock. Did you have any other emotions like fear, anxiety, anger, depression?

Val:
All of it. [laughs] I had a lot of fear.

Wendy Harpham:
Fear of?

Val:
Fear of losing him. Fear of every operation that was taken or biopsy was taken, if, God forbid, there was more--

Wendy Harpham:
The fear that they couldn't get a handle on the cancer?

Val:
Exactly. Every time they would go in, you know, you have to be afraid if there is more. To this day, you always have to be-- you're always scared.

Wendy Harpham:
But, going back to the beginning, when it was a brand new diagnosis, you had fear.

Val:
I was very depressed and very fearful of what was going to happen to him.

Wendy Harpham:
Tell me about the sadness.

Val:
The sadness. I am very close with my father. Like I said, we were more like best friends, and my closeness with him was not an average daughter and father relationship. We were truly best friends. And it hurt me deeply because you--especially with this type of cancer, you don't know what to expect. So every day it was a different battle of what's going to happen next?

Wendy Harpham:
Over those first few days and weeks, was there anything in particular that helped you accept his diagnosis and actually deal with what was happening?

Val:
I think the only thing that made me have a little bit--feel a little bit better was his attitude towards it. I believe that I- -I think he showed me not to be scared, even though I'm sure he was scared in his own ways.

Wendy Harpham:
How did he do that?

Val:
I still to this day don't know. In 57 years, he never had a problem, never been in the hospital, never had a cold. So this was tough on all of us, myself also.

Wendy Harpham:
Was it his behavior or his mannerisms, or did he--

Val:
Mannerisms--

Wendy Harpham:
--or did he articulate in words that he was hopeful or that he could deal with it?

Val:
I think he was being more hopeful and that he could deal with it for me to help. I think we helped each other, each other's feelings and remorse of what was happening. We helped each other. That's the only thing I could think of at this time.

Wendy Harpham:
Did you have anything else that helped you accept what was happening and deal with what was happening to your dad?

Val:
Did I know anything then?

Wendy Harpham:
Right.

Val:
No. Absolutely, not a thing. Not--nothing about cancer itself, this type of cancer.

Wendy Harpham:
How do you think your lack of knowledge about the caregiving needs affected your emotions? You know, you mentioned in the introduction that he was sent home from the hospital with all these medical needs, and you were responsible for him, but you felt like you didn't know how to do all those things. How did that affect your emotions about being the caregiver?

Val:
My emotions were--strong. I knew I had to be strong. I knew this had to be done. I knew I was the only one that was able to help him the way he needed the help. I knew I had to be strong for him so he could keep going.

Wendy Harpham:
Well, in a way it was easy, because to you there was no choice. You were the one who had to do it.

Val:
Yeah. I went in. I kind of went in there full force, like ready to go, like, "Let's do this!" And I'm surprised today I did what I did. But I just went in and did it. [laughs]

Wendy Harpham:
You know, though, some people are caregivers for a spouse or for a child. Do you think there's anything special or difficult about being a caregiver to a parent?

Val:
I don't know, because I'm not--I don't have a spouse or children. I'm sure if I have children I'd be the same way. But as far as the parents, the love is I guess a lot different than a spouse would be. I can't answer that fully. [laughs] It's just something you had to do. I took it from there.

Wendy Harpham:
You mentioned that he had quite a rocky course during much of his treatment, with dehydration and pain and swelling and difficulty eating and swallowing. How did seeing him suffer affect you?

Val:
It was very hard due to the fact that when your body and your mind tells you something, and doctors and other people tell you other things, you learn a lot. But at the same token, I was grasping for help anywhere, calling up people, saying, "I know things aren't right. Something's not right."

Wendy Harpham:
Who did you call, Val?

Val:
Like the nurses and the doctors after radiation. Like I said, he was fine through the radiation up until the last week. And I noticed a difference in him, a change in him that I hadn't seen in the course of his treatment. He was getting very tired, very incoherent.

Wendy Harpham:
What was the difficulty for you as the caregiver?

Val:
It was terrible to watch him go through that, and at the same token, he was scared. So he was so scared to go to the hospital and the doctors. So me begging for him to try to go get some help, and him being scared really brought things a lot harder.

Wendy Harpham:
How did you deal with that tension?

Val:
Well, in front of him I tried to be as strong as I could. When I went in the next room I cried my eyes out. it's very hard to watch a parent go through the pain and being scared themselves. Very emotionally draining on me, I'd have to say.

Wendy Harpham:
Did you turn to any other people to support you?

Val:
I tried to, at the beginning. I didn't know about the Internet at the time; I was just learning about the computer and stuff like that. I wish I would have known what I've known now. What I've tried to learn about--

Wendy Harpham:
What would you have done different, Val?

Val:
Well, time was of the essence, also. We were kind of rushed into having the operation done. I felt we were rushed from the beginning to the end. There was no time. I wish I would have found out more about cancer of the voice box and of the larynx. Maybe went to second and third opinions. I did go for a second opinion, but I wished I would have learned a lot more.

Wendy Harpham:
Now, did you ever have times where you thought your dad should call the doctor or go in to the doctor, and he didn't want to?

Val:
All of the time.

Wendy Harpham:
How did you deal with that?

Val:
If he was, like I said before--because he was so scared. And, as much as I begged and pleaded with him at times to please go to the doctor, and he didn't want to, and I understood. And I respected him, because he was scared, and I understood it due to the fact that I have my own health issues. I respect his wishes, and I told him from the beginning, "I will respect whatever you wanted. If you wanted to give up, I will respect that, but let's keep going." So I guess my being as strong as I was with him, he did listen. But a lot of times he didn't. And it made things 10 times worse.

Wendy Harpham:
But it sounds like you made the common ground that this was his illness, it was his body and his life, and he was ultimately in charge.

Val:
Yes.

Wendy Harpham:
Do you think that helped you?

Val:
Well, he really wasn't. I'd have to say he wasn't that much in charge. I feel that I was mostly in charge about everything.

Wendy Harpham:
Was that good or bad for you?

Val:
Boy, I'd have to say "good" because I think if it was up to him, and he didn't have me, I don't feel he would be alive right now. I think he would have gave up. I don't think he would have went to the doctors' appointments like he should, and stuff like that. I believe that I was a big push in his healthcare.

Wendy Harpham:
What is your role as caregiver, now that his treatments are completed now?

Val:
They've slowed down a little. I had to let him learn. At the beginning he was very scared. You know, I had to sleep in the same room. God forbid, something would have happened to him. At first, I think I did a lot for him, too much. But now I feel that I've given him the time to start learning on his own, to be independent on his own with his disability.

Wendy Harpham:
Is that working for him?

Val:
Well, after several months, I believe so. Yes, now. But he is still scared. He comes over and, you know, maybe this don't look right and that don't look right. That was another big issue with this. Every time--being the caregiver and not having known all of the things I should know with his type of cancer, it was constantly things happening. "Is this right? Is that right? Is this the way this is supposed to be? Is the stoma supposed to look like that?"

Wendy Harpham:
How'd you deal with that?

Val:
It was terrible. I don't know how I really dealt with it other than knowing in my heart, saying, "This is wrong."

Wendy Harpham:
Did you go for training or teaching, or did you look to any professionals to be able to help you answer these questions when your dad asked them?

Val:
No. I was pretty much on my own. Like I said, we did have a nurse come in, but it was just to maintain what I did. When he was released from the hospital, I was left--I think the nurses there taught me one day, and said, "OK, this is what you have to do for cleaning the--this is what you have to do for feeding him through the stomach.

Wendy Harpham:
Now, if you had to do something you didn't feel able to do, or your dad asked you a question you didn't know the answer to, what did you do?

Val:
Well, I would, if it came down to it where I really didn't know, I would have to call up other doctors' offices to find out what do I need to do from here? What do I need to do with this type of situation?

Wendy Harpham:
And did that help your problem?

Val:
Yes. Calling up, yes. But getting the doctors on the phone-- they're very rushed and they don't really answer this question fully. I just think I had to just get my mind together and think, what has to be done? Let's just do it.

Wendy Harpham:
So you tried to be methodical and logical and just basically defend your dad.

Val:
Exactly.

Wendy Harpham:
You know, you and your dad have been through a lot in the past year. Val, what do you think this experience of caring for your father has taught you about yourself?

Val:
I'm a lot stronger than I think I ever thought I was. I'm more-- I look at life a lot differently. I take things--I don't take things for granted like I used to. You start to take things a lot differently, like just life itself--going out and taking the time with the people that you love, family gatherings, enjoying life, what it has to offer.

Wendy Harpham:
You mentioned that you have some medical issues yourself. Has caring for your dad affected, in any way, the way you think about your own medical issues?

Val:
Being your caretaker for a lot of things, myself, I blocked out for the whole time my own issues. He was my main priority.

Wendy Harpham:
Looking back, do you think that's the best way to care for someone else?

Val:
No. I would do a couple things differently.

Wendy Harpham:
Like what?

Val:
Take care of my own self. Get the rest that you need, to be more sufficient. [laughs] I believe I've learned that you--I have to take care of myself also. So I would think that I done everything OK. [laughs]

Wendy Harpham:
Yeah.

Val:
But I would take care of myself a little bit more.

Wendy Harpham:
Val, how has going through this experience changed how you think about your dad or your relationship with your father?

Val:
I think it--like I said, we had a very good relationship. I didn't think it could get any better than it was, but it really has.

Wendy Harpham:
In what way?

Val:
Because I'm scared of losing him, I feel that we have grown a lot more. We do things a lot more, we spend a lot more time together. I try to, at least. And I think he has a different way of life, also. He looks at life a lot different, because he almost died. Life is a lot different and goes on a different way. I would have to say that's a big, big change for both of us.

Wendy Harpham:
What about your fiancee?

Val:
He was a great help with this. Through the beginning and the end he was good help to take--radiation with every single day. He's still taking him every day. He was good help with that. He was great emotionally for me, through my depression and being there for me to keep me somewhat insane. [laughs]

Wendy Harpham:
Was there ever a sense of resentment or anger that--here you're engaged to be married, this is supposed to be your wonderful, romantic time where you're the center of attention and now your dad is sick and needs you?

Val:
Yes, I believe there was some, you know--he was kind of torn. But I believe in the beginning I was honest with him and told him straight from the beginning that this is something that I had to do for myself and for my father. And he respected that. And I give him a 100 percent for respecting what I had to do.

Wendy Harpham:
How do you think the experience affected your relationship with your fiancee?

Val:
Like I said, it did take its toll. I spent a lot, you know-- too much time taking care of my dad. It did affect my relationship just a little. My relationship with my dad, he always, my fiancee always knew was very sincere. My dad and my fiancee are very close as friends, also. So, I have to say, my fiancee was very good with it all, but I'm sure, and I do know that there was times that he felt maybe he needed me just a little bit more than I really was there for and I'm trying to make up for lost time. More time with him now that things are starting to--my father's health is pretty much stable at this time. That he's able to start doing things on his own. I still do the caregiving of watching over him and making sure everything still looks good and so on, at least every day. We just had a little bit of a scare three weeks ago. We found a lump on his neck. But luckily that was just a little cyst of some kind. But I got scared all over again. I felt like my world was just starting to get back to normal. My relationship with my fiancee was getting back to normal. And I feel like for the rest of my life that maybe, God forbid, something could change. So, like I said before, looking at life differently, you take what today is and you enjoy it, because you don't know what tomorrow's going to bring.

Wendy Harpham:
Val, you've been so wonderful about sharing these personal thoughts and personal experiences. I know that they're going to help people who are listening or who read your story on the Web at the Cancer Survivors Network. Thank you so much.

Val:
Oh, I hope I'm a help to somebody. I know what it's like to be in a situation like this. And if I could help somebody, I'd be more than happy.

Wendy Harpham:
And we wish you and your dad the very best.

Dick's Story: Caring for a Son

Wendy Harpham:
I'm speaking with Dick, a 53-year-old caregiver from Ohio. Dick is married and has a son Richard, 14, who lives with him. Hi, Dick.

Dick:
Good morning. How are you?

Wendy Harpham:
I'm good. I'm glad you're here today.

Dick:
Well, thank you. It's my pleasure.

Wendy Harpham:
Now, when your son was seven years old, he developed some cold symptoms that progressed into fevers and then weight loss. His pediatrician prescribed antibiotics, but these didn't work, so you ended up switching doctors.

Dick:
That's correct.

Wendy Harpham:
A couple of months later he got really weak and developed chronic infections. And when blood work was done, it revealed what?

Dick:
It revealed that he had blast cells in his blood. His mother and I, at that time, did not know what the terminology actually meant, and the doctor informed us that these were leukemic cells.

Wendy Harpham:
So that was when you found out that he had acute myelogenous leukemia [AML]?

Dick:
That's correct. We went on down to Children's Hospital. And after a bone marrow aspiration, they could actually specify what type of leukemia and sub-class it was.

Wendy Harpham:
And over the next couple of months he had surgeries on his sinuses for chronic infections. And they just kind of watched him, until actually in February of the next year, his leukemia progressed, and he developed what's called "blast crisis"?

Dick:
That's correct. Blast cells reached the state he required chemotherapy.

Wendy Harpham:
Ultimately, in June of 1996, he underwent a bone marrow transplant with your wife Sarah as a donor.

Dick:
That's correct.

Wendy Harpham:
OK. Now, I heard that you were given the option of treating him with either an experimental drug known for very serious side effects, or a less toxic medication associated with a poorer prognosis. So what did you do?

Dick:
That's correct. And it was a very difficult decision, because going into this, we did not understand the disease of cancer and how complicated and different each cancer is, let alone the treatments. And we had friends who had access to the Internet. And fortunately my wife had a cousin who had done his fellowship in oncology at the hospital we were at. And we just used every resource we could to find out, but in the end the decision still fell upon us to decide which we wanted to do. And we chose that--since we were in a dicey situation with a prognosis of about 30 to 40 percent of a five-year survival of the disease--that we wanted to choose the longer survival rate and gamble on the toxicity of the treatment.

Wendy Harpham:
Very difficult decision.

Dick:
Yes, it was.

Wendy Harpham:
He also got injections of Ara-C into his spinal fluid during the course of his chemotherapy.

Dick:
That's right.

Wendy Harpham:
And you knew when you signed on that dotted line, you knew that the treatment was associated with the development of cognitive learning problems and gross memory loss in some cases.

Dick:
Yeah.

Wendy Harpham:
Well, Richard is now 14.

Dick:
That's correct.

Wendy Harpham:
Happily, his cancer did go into remission, and he's been in remission since. But he has developed severe memory loss and learning disabilities. And I understand he's had behavioral problems--frustration, anger, violence--that are suspected to be related to his treatments. So in your case, being a survivor, he was cured of his cancer, but that does not mean that his illness is over. During Richard's time in the hospital, when he was seven and eight years old, you did everything you could to keep him comfortable, along with camping out in his room. You brought him toys and games that he asked for. You tried to keep the atmosphere upbeat. And you were determined never to give up. Well, now that Richard's a teenager, keeping him active in school, managing his particular challenges, both medical and behavioral, remains your top priority. We're going to talk about all these things, so thanks for joining me today, Dick.

Dick:
That's quite all right.

Wendy Harpham:
Let's go back. You know, you have been through a lot. You, your wife Sarah, Richard have been through a lot. Let's go back to when Richard was seven years old and you learned that he had leukemia. Think back, and tell us what you and your wife felt and thought as you dealt with a child cancer diagnosis.

Dick:
Initially, it was probably the most crushing moment of our lives. And our doctor's office was a short drive away from the children's hospital we received treatment at. And I do remember that drive was just a tearful drive and not many words were spoken. Of course, my son at seven had no realization, really, of what he was facing at that point. Nor did we, practically.

Wendy Harpham:
What went through your mind?

Dick:
That we would lose our son. That there was a very good chance he would die. And fortunately, the doctors that met us, the oncologists that met us at the children's hospital stayed with us well into the night and explained the disease. And explained that there was great hope. And there was great hope, especially in the pediatric community, for treatment and the great strides that had been made. And that, you know, there was no sense in giving up. And, they also asked of our faith, which is a question not commonly asked in the medical community. And we were just very impressed by their caring after our outcome. And in the ensuing weeks and months, and when we did enter treatment, we made the decision. Fortunately, where I work I had a leave program where my fellow employees donated leave from all over the State of Ohio, so I actually could continue to be paid, even while we lived at the hospital. And we chose not to stay at the Ronald McDonald House, because our child needed minute-to-minute care, he was so ill. And we decided that, you know, we could do that better than the nursing staff, who was excellent, but like most facilities, they were undermanned for what they had. And we camped in his room. And we decided that our family would live together, would live through this together. And we would meet his every need. And each day we tried to make it just the best day, thinking that we didn't know if there was going to be a tomorrow for our son and our family.

Wendy Harpham:
It sounds like your goals were very defined, and you were very determined. Can you recall what thoughts and feelings you experienced during those days and nights and weeks that turned into months of seeing him have needle sticks and lumbar punctures, or bone marrow biopsies and procedures?

Dick:
I just found it incredible that as a child--and I can't speak for other children--he put up with this and really tolerated punishing treatment and very rarely complained. And actually, as we lived up there, we got to know so many families in the oncology ward and so many children that it was very common of them. But the fears were there at each time, as your child might take a turn for the worse, that, you know, this was going to be it. Because many times, they were so ill that you just didn't imagine they could really make it a few more days, but they--

Wendy Harpham:
So it was really a life and death fear?

Dick:
Yes, off and on the entire time. But my son also proclaimed, as a lot of children were transferred to ICU [intensive care unit] with various problems, that he was not going to ICU, he was going out the front door of the hospital. And he did.

Wendy Harpham:
And that gave you a lot of hope.

Dick:
Oh, yeah.

Wendy Harpham:
What were some of the difficult emotions you felt? Did you feel anger, frustration, or alienation? Or, I mean, were there any difficult emotions?

Dick:
A lot, especially from family and friends. And still to this day, people cannot understand, nor, I hope, will they ever have to understand, what we've been through. But you find that with other survivors, and especially with parents of children who've gone through that, because that's an entirely different feeling when you're making decisions for somebody else's life and not your own. That's a whole other tier of responsibility. I never particularly experienced any anger over what had happened. I think my son has at times questioned, "Why me?" And that question is not answerable. But we just tried to have faith in both higher powers and the people who were being directed to treat us and handle us, and they did with great respect. It was very frustrating, experiencing so closely so many families and the different ways things were handled. And it was very difficult watching a lot of children lose their battle--children that you came to know very well. You never forget them.

Wendy Harpham:
Did you have any difficulty thinking about all the things that you couldn't do and weren't doing because you were in the hospital caring for a very ill child?

Dick:
Not particularly. I mean, we focused so much on what we had at hand. We shut out the world we meet and what was. Those were no longer important. Our son's survival was, and we knew the only way we could get through this was to focus on that, focus on his treatment, focus on his care. And we were great advocates. We questioned all that was done and tried to do it in a polite, professional manner, not be rude to the people who we were working with. But we knew that we knew best for him, and that we were the people to make the best decisions for him from day to day. So no, I didn't feel that I was being cheated a bit from being shut out of the world. I actually--we tried to look at it even as a new experience. We made new friends. We were where we're at, and we could not change that. So it was a matter of trying to make the best out of the worst situation. And, as I said, we tried to, every day, somewhat have a laugh, try to get some enjoyment out of it, to entertain my son and hopefully have him think of something fun. I mean, we sometimes acted quite foolish as parents--

Wendy Harpham:
[laughs]

Dick:
--to entertain the children. Another father and I played dress-up, or actually dressed up in women's clothing just to entertain the children, not that we do that regularly, but--

Wendy Harpham:
Dick, you just described tremendous acceptance. You know, we think of children as having their whole future to look forward to, and your son's life was threatened. His future was most uncertain. I suspect that you didn't accept it like the flick of a light switch, you know, a minute after you were told the diagnosis. What helped you accept and cope with what was happening to your son?

Dick:
I guess I'm not a terribly religious person, but I do have faith that the God individuals believe in will direct them the way they need to go. And at that point there was nothing else left but to have faith that we would be taken on a path that we were destined to go to. And in the hopes that, if my son survived, that we could perhaps help others, maybe even be a decent example to others as to how to behave while under fire. And today's interview is an example--I just continue to try to do what I can, when I can, to help others with information, and to let them know that other people who have experienced these things. You may live far away, but you're not alone. And I think that's why the [Cancer] Survivors Network is very important, because it allows people to have some contact, and to make--to share their stories. And to realize that it's very difficult, that your neighbors around you aren't going to understand, but others need the same contact, who have shared similar experiences.

Wendy Harpham:
I couldn't agree more. And what it does do is it makes something good come out of your bad experience.

Dick:
Yeah.

Wendy Harpham:
And it also allows people to learn from mistakes that happened or problems that happened. A lot of times caregivers look back and said, "I wish I knew then what I know now." Looking back, is there anything you would have done differently in those first days, weeks and months of Richard's illness?

Dick:
Yes, I and my wife, probably as we returned home, we made a probably false assumption, just from being naive, that things would probably like to return to normal and fairly quickly. But we returned home with a child who was still terribly weak and ill, and required tremendous amounts of medical care. And I had to return to work. And it really left my wife at home carrying the majority of the burden of caring for him. And although we had some home nurse services provided, so much of the burden fell on my wife that, as I look back, I wish I had sought out extra help for her. Because family and friends were intimidated by the situation, because there was such a high level of care needed that it wasn't like somebody was going to offer to administer IV drugs and do these kinds of things that we had to do.

Wendy Harpham:
Where did you go for help and guidance?

Dick:
Nowhere. There wasn't, I mean, there was nothing. We are a 70- mile one-way drive from our children's hospital. If we actually needed true medical help, our local hospital is very cooperative. But as for day-to-day help, there was none. It has been my wife and I, basically, all these years. Our parents are very elderly and ill. They were not available. Most of our siblings were too intimidated to deal with it. And we really did not have too many people step forward to say, "Hey, why don't you go out for the evening and eat dinner and go to a movie?" That didn't happen. And not that I begrudge that not happening, because we have had a more important thing to do in caring for our son. Matt is the primary thing. He did not ask to come into this world. He did not ask to have cancer, and as his parents, it was our responsibility to take care of him. And I, in looking back, I wish I'd searched longer and harder for people who were compassionate and who could have helped maybe as he got a little bit better, be a caregiver. And actually, in the last year or two, we have had somebody that has done that some for us.

Wendy Harpham:
You know, the other thing you talk about is, when he came home from the hospital, as he recuperated from his transplant, he had tremendous physical needs and all. But the other thing is, it's seven years later and he still has difficulties and problems and medical issues. And when he was diagnosed, you shifted into crisis mode. And it was a life-and-death thing. And now it's like, he didn't die, but he didn't get cured and go back to his normal life, or go back to growing up. It's almost like he landed on the side of the coin. That he still is a patient; still has medical issues. Dick, what helped you accept and cope with the fact that it wasn't over, that he had ongoing problems even though his cancer was cured?

Dick:
Because of his needs, I mean, we still have a lot of dealings with our children's hospital. And we have had necessities to go to other departments other than oncology, due to the late- term effects and complications. And there were periods-- actually a short time after he was transplanted, as he regained his health and his strength, that we almost had an illusion that we were on the brink of normalcy. And actually the late effects, as the term says, they somewhat popped up some months afterwards, slowly but surely, until it became quite evident there were very serious issues. But as we would return to our hospital, it's the old saying that you don't have to look too far to see somebody really that even has it worse than you. And I knew, deep in our hearts, we knew that with the proper attention and the proper help and guidance, that there was hope for our son. And that he could get better, and that he could be a functional part of society, and he could have a life.

Wendy Harpham:
What helped, what else helps you find hope? And nourish hope?

Dick:
Just different people I know. I mean, we have a young man who is severely handicapped, has never walked and never will, who has the most tremendous attitude about life you could ever find. And I look at that young man, and I think, if he has the heart and the guts to approach life with a smile on his face and to enjoy life, then there's no reason we can't, because we're certainly luckier than he. And as I said, at the hospital, you see children that have tremendous, severe problems that are never going to get better. So that bolsters when you know there--you can see incremental improvements in your child. Then, even though there are still serious problems, it does give you hope. And you just know that your choice is to give up or go on. Well, that's not much of a choice if you're a parent.

Wendy Harpham:
You know, the last thing you expected when you had a baby was to have a child who developed cancer. What do you think you've learned about yourself for having gone through this caregiving experience?

Dick:
You learn that life is fragile, and nothing's guaranteed. Yes, our child was the cutest--of course being prejudiced parents, we would say that--was the cutest, happiest child. We tried to provide him with a very spoiled, little idyllic life, and he was the healthiest child you could ever imagine, for years. And material things, you learn really they're nice. And everybody should, I would hope, enjoy having comforts of life, but in the bottom line, they're not important. We used to come up with a joking little phrase saying, "Well, if it wasn't going to cause us to have surgery or we weren't going to die today, then, hey, it's been a good day." So, you know, we just learn that life is too fragile and too short. And you just need to make the best of each day you can, and make the best of each person that you meet. I mean, I'm not perfect, and I have my bad days and grump at people. And we all do, but still we have learned that you just cannot take things for granted and we all have an end in life, so you must enjoy it to the fullest.

Wendy Harpham:
These are really powerful life lessons. Do you think you've learned anything about yourself, about Dick, that you didn't know before your son got sick?

Dick:
Yeah. I really came to have, I think, a great deal of compassion. I came to almost look at myself as a great advocate and actually, if my son still didn't require a lot of day-to-day care, I would hope that I could even be more active in helping people who suffer and caregivers of cancer patients. And I try to do that at least by the phone and through Internet and email as much as I can, as I have time to. And that's something I never saw myself doing. I was just a common kind of blue-collar guy, really. And I've learned that compassion and trying to at least give a kind word whenever you can to somebody and a word of encouragement and probably especially to kids, because our experience was so much in a pediatric community. As I come out into the world, and I see kids every day, I just try to talk to them and befriend them and encourage them, because all children need it. It's a rough world out there for kids these days.

Wendy Harpham:
Before we close, I realize he was only 7 when he was diagnosed, but what do you think you've learned about your son for having gone through these years of illness and difficulties?

Dick:
He is amazingly tough, amazingly resilient. He certainly has a capacity to--he enjoys people tremendously. As serious as his illness was, it taught him how even to communicate with all levels of age groups and all walks of people. And to this day, he just enjoys going up to adults and sitting down and talking with them. I have great admiration for him. I can never understand what he must have thought. Even if you're 7, you still have a sense of yourself, a sense of "ID". And certainly, as he had all these horrible things done to him, he was not--I'm sure he was aware how close to death he was many times. And I have no idea, to this day, exactly what he thought about all of that. Unfortunately he has memory loss, but part of the fortune of that is he doesn't remember all of it real well, but actually bits and pieces come out as time goes by, and we talk. So you know--

Wendy Harpham:
So life is not what you expected. Life is hard, but life is good.

Dick:
Yes. And I think everybody has hard times in their life and good times in their life, so you cannot just say, "Woe is me. My family has just all the problems in the world." Because that's not true. But my family also has a great blessing and great kindness shown to it from lots of people. And so life is worth living and you must live it, not just watch it.

Wendy Harpham:
Dick, I know that your story and your insights are going to inspire many parents and relatives caring for a child with cancer. We can't thank you enough for being so personal and honest and helpful.

Dick:
Thank you very much.

Wendy Harpham:
I really wish you the best.

Scott's Story: A Couple Who Tackled Cancer as a Team

Wendy Harpham:
I'm speaking with Scott, a 43-year-old author who cared for his wife throughout her long illness. Hi, Scott.

Scott:
Hello. How are you, Wendy?

Wendy Harpham:
I'm good. I'm glad you're here.

Scott:
Thank you.

Wendy Harpham:
In 1992, your wife, Kate, who was then about 30 years old, had a routine gynecologic exam. The doctor found an abnormal mass, and the biopsy showed papillary adenocarcinoma of the cervix. Well, needless to say, you were both shocked. Kate had a cone biopsy, which did not remove all the cancer. It took about six weeks before you could get beyond the disbelief and just the immobility and become proactive, at which time you said, "Well, what are we going to do about this?" You didn't have children, so I imagine it was a very big decision for Kate to proceed with the hysterectomy?

Scott:
It was, but we also had already talked about not having kids, so it wasn't as big as it might be for other folks.

Wendy Harpham:
OK. And I understand you were confident that this hysterectomy would take care of the cancer, for good.

Scott:
We thought it would. Based on the doctor's statistics and information, that seemed like it was the best path forward for her.

Wendy Harpham:
Life returned to some sense of normal for a year or so, and you had really to do no caregiving. And then the two of you ran a marathon, and rejoiced.

Scott:
Right, right, that's true. That was a big part of our life, which was running, and we felt like the cancer was gone. And then, you know, we were in an effort to return to as much normalcy as possible. Running was one of those things, doing a bike tour was another. Just things that we did in our life before cancer, we wanted to keep doing after cancer.

Wendy Harpham:
But then that tumor came back, and it was, I guess, in the same area. And the doctor said that removing it completely was impossible, and your wife was told she had two years to live. And it was at this point that you stepped into the caregiver role, helping Kate recover from her surgery. And then you took 11 months off work to care for her, during which time you did a lot of research on her disease and treatment options. She began a series of treatments including chemotherapy, internal and external radiation therapy, and three operations. She stayed in the hospital for at least two months of her six months of treatments. And you spent most of the time with her there. She's recovered from her surgery and treatments, but she now has, is it lymphedema, the swelling of the legs?

Scott:
That's correct. She has lymphedema of the legs.

Wendy Harpham:
Which limits the types of activities she can do, which is a very big issue for you, because you and your wife are very athletic.

Scott:
That's right.

Wendy Harpham:
Instead of running, the two of you took up long-distance hiking. And, Scott, you've published a book that weaves the story of your cancer experience with the story of your 810- mile hike. The book is titled Crossing Divides: A Couple's Story of Cancer, Hope, and Hiking Montana's Continental Divide. Well, thanks for joining me today, Scott.

Scott:
You're welcome. I'm happy to be here.

Wendy Harpham:
You were both in your early 30s, athletic, healthy. Share with us some of the things that went through your mind. Go back when you were first told that your wife had cancer.

Scott:
Wow. Well, I think like a lot of people, we were filled with disbelief, and me as much as Kate. I think the really shocking thing was to be, even when we were out in the library or doing as much searching as we could for what papillary adenocarcinoma was and what the doctor had just told us could take Kate's life. And to be looking at Kate, walking through the library stacks, for instance, when we were searching for information and just going, "How could this possibly be? She's the same person she was an hour before the doctor told us that. It doesn't look like anything has changed." You know, we had just run to work that morning. We were already planning and buying stuff for going to Tasmania on a six-week bicycle tour. And nothing that you could see physically said that anything was any different than two minutes before the doctor told her she had cancer, that it was a very serious type of cancer, and that she might die from it. So, I think the shock and disbelief probably comes to everybody, but it was definitely true for us. We just could not believe what we were being told. And there was this point, of course, for many days, until we got back the second pathology reports, where we thought, OK, they must have got Kate's slides mixed up with somebody else. This couldn't be her. In fact, we went to five different pathologists just to be absolutely certain. That's what directed what the future treatment--and thoughts about what the future held--was with the pathology slides from the biopsy.

Wendy Harpham:
Now, as the shock started to fade, what emotions arose?

Scott:
Anger, I guess, is one that you want to say. But I don't know that that was as much as sadness, and I think a real prevalent one for us, at least certainly for me, was the concept of loss of innocence. It's this feeling that all of a sudden the world was not this vast, open playground with an endless set of opportunities for us, but all of a sudden there was this huge potential limiter. And that felt really hard for people who always felt like we could do anything we wanted, anytime we wanted--incredible freedom. I can remember that one of our pathologists, who was a friend of a friend, calling and telling us, "Yes. It is truly papillary adenocarcinoma and it does look like it may already be invasive," and so on and so forth. And having him say specifically, "You know, one thing you won't be doing is you won't be living in a cabin in Montana and far away from medical treatment for the rest of your life." And I remember that feeling just like I had been stabbed in the stomach, because that was kind of a concept.

Wendy Harpham:
So it was a great loss.

Scott:
Yeah, yeah. So I think, more than being angry and mad and all those kinds of things, I think it was the sense of loss, regardless of what happened. Somehow it was taken away by that medical hysterectomy and everything. It was suddenly this sense that everything wasn't just open and available to us. It's kind of a concept of growing up. People don't have to have cancer to hit that realization, it's just that when you find out, when we found out we had cancer, it was like hitting a brick wall of that variety, rather than kind of growing into the idea that you're getting older and probably aren't going to do everything in the world.

Wendy Harpham:
Right, because it happened so suddenly. And it isn't just the loss of the tangible, physical things, like she lost her uterus. People lose other organs or body functions, but you lost dreams. You lost potential future things.

Scott:
Yes. That's very true.

Wendy Harpham:
How was your reaction to the recurrence? The same or different than the reaction to the first diagnosis?

Scott:
Well, it was definitely different in some ways, because 18 months roughly after the radical hysterectomy, the cancer came back and was about a tennis ball-sized tumor on Kate's cervical wall. And I think the reaction was different, because we knew some of the things, just the logistics, would entail as far as going to the hospital, probably having surgery. The idea that kind of the big three weapons of surgery, chemotherapy, and radiation, and we'd only had surgery to that point. Mentally, there was this real anguish over the fact that, well, if you've had surgery and now you go to chemotherapy, that's kind of like one more step toward there's nothing else to try. And--

Wendy Harpham:
Using up your cards.

Scott:
Yes, thank you very much. Using up your cards. And so it always felt to us like if we had to go to radiation or chemotherapy, and of course they then said to us that we should do radiation and chemotherapy. And it almost felt like, "Oh, my God. If this doesn't work, what's going to happen?" So it was still in some ways maybe even a heightened sadness, anguish because of the fact that we already knew by being in the hospital and seeing other people who were very ill with cancer meant--and how our life was disrupted the previous time just by Kate not working for five weeks, and me not working for a week when she was in the hospital. So we knew that this was like this big interruption of our normal life.

Wendy Harpham:
How was your role as caregiver different the second time around?

Scott:
I think that on the first time around there really was caregiving, even though it was very short. But the big difference, I think, the first time around, it was much more tough. Both instances it was mental. The first time around because Kate had a completely healthy body and she had the first surgery she'd ever had. She recovered very quickly. Physically we were back eight weeks later, I think. We did a bicycle--no, three, four months later, we did a six-week bicycle trip. So physically the first time there wasn't as much taking care of her. But mentally it was definitely, we were back and forth talking and supporting and, you know the truth, supporting each other because I was in anguish and she was physically and mentally in anguish, and so that was very much part of the first surgery. And then the recurrence was very much the same, because we used to spend lots and lots of time talking about: "What if you die? And what are we going to do?" And so we would talk about that. And so there was some real support to be said about, you know: "If that happens, we'll do this." And "I'll be here every moment with you," and all those kind of things. But then, aside from all the mental aspects, there also was a big physical aspect the second time. Because between the chemotherapy, radiation, and in the end, Kate would have three more surgeries after the recurrence-- well, three surgeries, including the one for trying to remove the recurring cancer. For about six months the person who was a marathon runner and incredibly active was eventually laid out on the bed with just some logistical things. We were giving her shots for pain medication, hooking her up to her TPN [total parenteral nutrition] feeder. She couldn't eat for about, I think, about three months she couldn't eat at all. It was all tube feeding. So every night I would hook her up to that.

Wendy Harpham:
What feelings did you have? What thoughts went through your mind when you saw your beloved wife in that condition?

Scott:
Just tremendous sadness. Here's a person that I run with and backpack with and bicycle with. And I kept thinking, for instance, when I would go bicycling and look in my rear view mirror on my helmet, there would be nobody there. It would make me incredibly sad. And we would always run together, and we like to run on the back country trails and stuff. And you know, it seems trite, but it's really true, I would be running and thinking, "You know, I don't hear anybody."

Wendy Harpham:
So you were sad for you, at your loss?

Scott:
Well, I was thinking of the fact that--yeah, some of that was very much true--of what would I do after Kate was gone, because they had told us she would not be alive in six to eight months. And then I was also very sad for her because of her physical state was so deteriorating. And some ways so-- this is the place where I was angry for her--was that so much of that was because of the cancer treatment. At that point, the cancer itself was not actually dragging her down, it was all of the effort to remove the cancer. And I just felt so sad that she came to be wilting away, and she felt so helpless sometimes. And it made it so horrible for her that she had this sense that at some places, at some times in some of her very low moments, where she couldn't pull herself back up, she told me once that, "I feel like I'm being--I'm in the ocean and the waves are pulling me back out, and you're standing on the shore, and I can't get back there."

Wendy Harpham:
What helped you deal with your sadness and fear?

Scott:
[laughs] You know, a couple--I guess a number of things. I won't--I can't think of quickly in order, but prayer was one big thing. Knowing that other people were praying for me was a good thing--for us, don't get me wrong, they were praying for Kate. The support of my family was important, because they were supporting Kate. And then, you know, there's a lot of need for privacy, at least for us there was. We weren't really--we didn't really have a support group. Some people, I think that's what they really needed, and for us we were a bit more private, maybe. But having family and friends support Kate directly, and then in a lot of instances, support me so I would be stronger to support Kate, I think is a really big deal.

Wendy Harpham:
How did they support you, Scott?

Scott:
Oh, just calls, going on runs with my sister. My sister and I live in--Kate and I and my sister and brother-in-law all lived in the same town at that time. Being not afraid to--and this is not just me, this is Kate and I--being not afraid for friends to come and say, "Let's go do something fun."

Wendy Harpham:
Who would stay with Kate while you did that?

Scott:
In some instances, we both would go together. In other instances, like for instance going on runs with my sister, Kate was never in a state where she couldn't be by herself for a couple--

Wendy Harpham:
OK.

Scott:
--so that wasn't an issue.

Wendy Harpham:
That wasn't emotional for you, to leave her and know she couldn't run while you were out running?

Scott:
Oh, absolutely.

Wendy Harpham:
In what way, Scott?

Scott:
Oh, just the idea. I mean, we went through this many times, where she'd say, "Go run. You'll feel better." And I'd say, "Well, that's not fair. I can't go if you can't go." And that point brings up something really important, I think, which is one of the people who was important in helping me be strong for Kate was Kate. She's a very strong person and would often tell me, "It's hard. I can tell that it's hard for you to take care of me." And would say, "Go do something. Go do something fun." And that's really hard for a supporter, because you think that you just want to be there and if she rolled over in the hospital and moaned or something, I would run and get the nurse and stuff.

Wendy Harpham:
So it was a mixture of fear that something might happen while you were out or feeling guilty that you could have a good time while she couldn't?

Scott:
You know, I think it's both. But I think really that latter point is--it sounds weird, but it's true. To see your partner suddenly be so debilitated--like, for instance, in this two months in the hospital where we're getting up to go for a walk down the hall might be the most we could do, and that might be once in the entire day. There is, for me, there was some guilt to say, "Oh, I'm going to go do that neat run that we did the week before we started the radiation, when you were still feeling OK."

Wendy Harpham:
How did you work through those feelings? Did you get to a place where you didn't feel guilty or sad when you went out for a run?

Scott:
Yeah, definitely. I think part of that was because I realized that the best I could be for Kate was if I was operating at full speed. And one of the things that I could do was coming back to running, because that was just the thing that we do. And it really would help me to clear my mind. It might be yoga for somebody else or whatever, but to be my best for her, I had to be at my best. And I think that goes back to something that friends can help with, is pointing that out, "God, you don't look like you've taken a shower in three days!"

Wendy Harpham:
[laughs]

Scott:
"Come on. You're not going to be any good to her if she's worried about you. How can she get well for herself?" And that's important--you have to be at your top level to help somebody else.

Wendy Harpham:
Taking care of yourself helps take care of your loved one. You obviously are very close, and were very close to Kate, even before the diagnosis.

Scott:
Oh, yeah.

Wendy Harpham:
How has the experience of caring for her affected your relationship with her?

Scott:
Oh, well what you said is true. We were extremely close beforehand. I think that we lived through something that was so terrible certainly has to make us tighter. One of the ways, I guess, is when we talk with other people about it. You know, we have lots of friends now that we didn't even have when Kate had cancer or finished with her treatment seven and a half years ago. And there is this realization when we talk to them that they don't really know what we went through. [laughs] And I think that the bond between the two of us, knowing that, is enough. We're not maudlin. We don't want to go through all of the gory details with people unless they're interested, because of their experience or whatever. But the fact that we know together that we came through something so incredibly difficult makes a lot of the day-to-day challenges of life seem pretty trivial. And I think that that part has made us even stronger together as a couple.

Wendy Harpham:
So actually some good things came out of the bad experience?

Scott:
Oh, yeah. Yeah, I think so. I don't think that we have done this thing that people so often talk of: "Oh, cancer really changed our outlook on life." And I think maybe, to a small level, yes, because you were at a point where death was right next-door. And we realized that the cancer could someday come back. And, you know, a brick could fall on her head and kill us, too. So some of that is--there is certainly some reality in the statement that cancer has changed our lives. But on the other hand, we were living the life that we wanted to, and this was a huge interruption. And we are now trying to reclaim a life that we want to live, and we don't want to be afraid to live it because of cancer or because of the future potential of cancer. So, in some ways, it's not so easy just to take the huge brush and say, "Oh, my God, everything has changed since cancer." Oh, yeah, some things have changed, but we still have a lot of the same beliefs.

Wendy Harpham:
Do you feel like you've learned anything about yourself by caring for her? Things that you didn't know about yourself before her diagnosis?

Scott:
I think maybe just--the depth of my love for her has quadrupled in my knowledge of it, if you will, because I'm so happy to be with her. And so, 10 times stronger in the fact that she is the most incredible person to have the strength she has. And I think maybe this being such a trying time for a caregiver might have shown me that I also have strength inside of me that I didn't know that I had. Because there's a lot of times when you get to this spot where you think everything is hopeless. And you learn that if you keep fighting, keeping thinking, you know, keep your hope. I mean, that's trite but true. Who was it? There's a book we read that they said, "In the face of uncertainty, there's nothing wrong with hope." That's, I think, a really important statement.

Wendy Harpham:
So these things you knew before, you understand in a whole new way?

Scott:
Yeah.

Wendy Harpham:
You know, you talk about your life not suddenly being opened, because you were happy and you did embrace life before the cancer diagnosis.

Scott:
Uh-huh. [yes]

Wendy Harpham:
But you also said, Scott, that you have a heightened appreciation of the fragility of life.

Scott:
Absolutely.

Wendy Harpham:
An appreciation that you truly didn't have before. So how do you feel caring for your wife through this grueling treatment and after her treatment, how do feel that being aware of the uncertainty of her future affects your understanding of life?

Scott:
I have to think about that for a second.

Wendy Harpham:
What do you know about life now that you didn't really know before her life was so threatened? How to live life, how to love life?

Scott:
Yeah, that's one of the points that I think that we were never greatly tied into the great American dream idea of big cars and all that kind of stuff. We were always very much more enlivened by experience rather than possessions. And I think that one thing about life that I Iearned from Kate's and our cancer experience is that we were on the right path. I think that going through cancer and being in the hospital for us, there was no point of comfort in looking back and thinking that we had a Mercedes-Benz waiting back in the driveway, which we don't.

Wendy Harpham:
[laughs]

Scott:
There was a huge amount of comfort over and over and over again, thinking about the fact that we had been just two weeks before Kate's cancer--we learned that it recurred--we had spent two weeks in a kayak in a river in Alaska. And we spent lots of time. Kate would say to me when we found out about her cancer and she came out of anesthesia, and I had to tell her. That next morning after the anesthesia was more gone--I said, "Do you remember what I told you?" And she simply said, "Yes, but we can't talk about that, it's too bad. Tell me about Alaska. Tell me about--tell me about something happy." And so I think that's something maybe we learned that we do that was 10 times strengthened. Is that the experiences in life and the people--I haven't mentioned yet, but the people and the people that you love--that's the part that comes back to you. Not the things you've collected or all of those kinds of things that seem to be the things that we get caught up too often in life. And maybe again, along with that getting caught up with that, also, is the concept of releasing some of the petty things. I think we also--I think we realized that, and again we doubled that thought. We spend a lot of time every day worrying about things that really aren't important.

Wendy Harpham:
Is that at all related to the fact that you were an engineer when she was diagnosed and now you're a full-time author?

Scott:
A little bit. Because part of what we realized is that we were not in our best place, if you will, to live. And that spot--we were married in Montana, I'm from Montana. We spent all kinds of summers coming up here for our two-week, three-week vacation or whatever. So part of our experience when Kate was in the hospital or at home during about--she was out for about 11 months' work, and I was, too. We were lucky enough that we had disability that allowed us to do that. Similarly, because of that, I was able to spend every night with her that she was in the hospital in the hospital room. But during those times we talked--one thing we did, we talked earlier in this conversation about losing dreams. But the fact that you lose your dream does not mean that you have no dream. What we did is we created new dreams. And one of those was, when this is all over we need to move to Montana. That's where we want to live. We don't want to move there when we're 60. We might not make it to 60. And so we moved to Montana fairly shortly after. I think we worked two more years. And about three years after Kate's last treatment, we moved back to where we wanted to be. And I have, since then--to answer your question--been writing both creatively and as a technical writer. And part of that is economic reality, because I haven't yet searched out a job here. It's much less market here than on the coast. But Kate has been able to do something that she was dreaming about all along, which was get out of a corporation and become a consultant. And, so, yeah, those things are all tied together. If the cancer hadn't happened, we would have moved to Montana, but I'll bet it would have been 15 years from now or something like that.

Wendy Harpham:
Well, I think it's wonderful that you've shared your insights and your experience in your book, Crossing Divides: A Couple's Story of Cancer, Hope, and Hiking Montana's Continental Divide. Thanks for joining us, Scott.

[Editor's note: For more information on Scott's book go to his CSN Personal Webpage]

Scott:
You're welcome. I appreciate being here.

Wendy Harpham:
I hope these personal interviews that focus on caregiving issues help you with some of the concerns that may be part of your life. I want to thank our guests, Dick, Scott, Val and Char, 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 at www.cancer.org and on the phone by calling 1-877-333-HOPE. For the American Cancer Society Cancer Survivors Network, I'm Dr. Wendy Harpham, wishing each of you a great day, today and every day.

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