End of Life

Recorded July 17, 2002

Ric username: ricblake Ric's Story	Catherine username: wavescb	Karen username: lovelyinla Karen's Web page

Welcome and Participant Introductions

Michael Samuelson:
Hello and welcome to the American Cancer Society's Cancer Survivors Network. I'm Michael Samuelson, your host. Today I will be talking to three survivors of cancer with terminal diagnoses. As a breast cancer survivor myself, I am pleased and I am honored to be your host for today's conversation as we talk about: working with your doctors to stay on top of the disease, coping with multiple types of cancer, raising teens while living with cancer, maintaining relationships with partners and children while living with terminal cancer, making the decision to stop treatment, and giving importance to the end of your life.

Our first guest is Ric, a 57-year-old survivor of thyroid cancer from New Hampshire. Ric is married and does not have any children. Welcome to the show, Ric.

Ric:
Thank you, Michael.

Michael Samuelson:
Now, Ric, according to my notes, you were diagnosed with thyroid cancer in 1995 after a routine physical where you showed a doctor a lump in your throat. Tests and surgery confirmed that you had poorly differentiated follicular carcinoma with Hurthle cell variant--a relatively serious type of thyroid cancer. Your tumor, which was eight by ten centimeters in size, had grown into your jugular vein. So the doctors resected the vein during a long, complicated operation that left you with bilateral vocal cord paralysis. Shortly after, you had an emergency tracheotomy in the spot where your thyroid had been resected. You lived with a breathing tube in your neck for three or four months, during which time your pharyngeal nerves healed. The tube was removed and you regained your ability to speak. You also underwent radio iodine therapy, a particularly difficult treatment. And again, thanks for joining us today, Ric.

Ric:
You're welcome.

Michael Samuelson:
Also joining us is Catherine, a 52-year-old cancer survivor from Ohio. Catherine is married and has two children at home, a son who is 17 years old and a daughter, 16. Welcome, Catherine.

Catherine:
Thank you. It's good to be here.

Michael Samuelson:
And Catherine, according again to my notes, you were diagnosed with three types of cancer, beginning in 1995 when you were diagnosed with GIST (a gastrointestinal stromal tumor). The tumor was considered benign at the time and was removed from your small intestine. Then, in 1997 doctors found a tiny spot in your right lung. They did a chest CT scan and were unable to identify the problem. They watched the chest lesions grow over time and determined that you had leiomyocarcinoma, and in December of 2000--

Catherine:
They watched the lung, and in '97 they actually--they thought it was something benign, and in '97 they diagnosed me with leiomyosarcoma, which is primarily in the adrenal gland.

Michael Samuelson:
Oh, all right. And then again in December of 2000 you had a VATS, a video-assisted--oh, and you're going to have to help me with this-- a thoracotomy?

Catherine:
That's when they were continuing to monitor the lung spots. They started to grow in 2000, and they did the video-assisted thoracic surgery.

Michael Samuelson:
OK, and at that time three wedge sections were removed from your right lung. Is that right?

Catherine:
Yes. It was an adenocarcinoma of the lungs.

Michael Samuelson:
And you had--and you still have--many tiny tumors throughout your lung.

Catherine:
Yes.

Michael Samuelson:
I understand the condition is considered untreatable.

Catherine:
Yes.

Michael Samuelson:
Meanwhile the carcinoma is now in stage III and the GIST is cured. You believe that having three types of cancer might be related to having Cowden's disease or Cowden's syndrome?

Catherine:
Cowden's syndrome.

Michael Samuelson:
This is a genetic disease that results in cell overgrowth and is linked to certain types of cancer such as breast cancer, and you undergo frequent breast exams because of this. Again, I thank you so much for joining our group, Catherine.

Catherine:
You're welcome.

Michael Samuelson:
Our final guest is Karen. Karen is 49 years old, and she is a cancer survivor from California. Karen is divorced and has a 25- year-old daughter. Welcome to the program, Karen.

Karen:
Thank you very much, Michael.

Michael Samuelson:
You were diagnosed with anal cancer in October of 1999, four years after the cancerous tumor was misdiagnosed as a hemorrhoid. You underwent three months of intense chemotherapy and radiation. About a year later, in January of 2000, doctors removed an enlarged lymph node and determined that you had metastatic squamous cell carcinoma. You debated whether or not to have chemo, which would possibly add four months to your two- to four-month life expectancy, and you opted to have two rounds, which was really all your body could endure. It has now been two years since treatment. There is cancer in your liver, your kidney and elsewhere. Meanwhile, you are focusing on living in the present, and bless you for that. Thanks for joining us today, Karen.

Karen:
Thank you.

The Importance of Making Informed Decisions

Michael Samuelson:
Ric, let me go ahead and ask you a question. How important is it to make an informed decision about your care?

Ric:
Well, I can't speak for anybody else, but for me it makes all the difference in the world. I'm the kind of person who wants all the information that I can get. I want to be able to make a decision as an equal partner with my providers. If I don't have the information then I feel very uncertain and not reassured.

Michael Samuelson:
And the rest of you, how do you feel about that? Catherine, you had three different cancers. How do you use medical information to your advantage in facing these cancers?

Catherine:
In my case, it's been absolutely critical. All three types of cancer including the very unusual sub-type of lung cancer that I have are very rare. Fortunately, I take an academic approach to a lot of things, and that has served me well with the cancer. There is very little known about treatment and so forth of the different types of cancer that I have and have had. I really don't think I'd be here today if I was not deeply involved in understanding my disease and understanding what treatments are available and how things do work.

Michael Samuelson:
You know--and we hear this so often and it can't be underscored enough--the importance of being part of your own treatment team, in fact being the head of your treatment plan, if you will, or your treatment team. Karen, in terms of support people, do you feel that having information for your family and friends improves the support you get from them with regard to your decisions?

Karen:
I think yes, it does improve the support. However, I mean, one of the things that I'm facing currently is that everyone knows what my diagnosis is, and as I become more affected by it, with having more pain and as things develop, I see people wanting to fix me.

Michael Samuelson:
Ahh.

Karen:
Some friends and family get into this role of trying to fix me when I'm unfixable, instead of just being with me, and I think that's where I'm going at this moment. It's like, "You need to calm down. I'm not afraid of this."

Michael Samuelson:
Yeah.

Karen:
And just be there.

Michael Samuelson:
How does it make you feel when people are constantly saying, "Have you tried this? Have you tried that?" or "I've got some new information for you," or "You shouldn't believe this; you should believe that," and they try to enter into the decision process?

Karen:
I just stop them. I mean, I just stop. You know, I've done all the research that I want to do. I've applied for clinical trials in the beginning when I found out I had metastatic squamous cell carcinoma. From that point on, once I had determined that there was really nothing to do but chemotherapies, there was nothing that positively would change my DNA, which is--the cancer has changed my DNA. So, there wasn't a one that was like a finite chemo that could particularly go after this particular type of cancer. And then I had refused a number of clinical trials, and also an alternative medicine program had refused me. So at that point I just said, "This is it." You know, I don't want to go back. I don't want to be rejected anymore. And I had to now work on the idea of dying.

Michael Samuelson:
The fact that you had exhausted what you felt was available was important to you. I have a question for anybody who wants to grab it. There is so much information out there. Where do you guys look for reliable and accurate information? Anybody? Ric, how about you? Where do you go for reliable information?

Ric:
Well, I'm fortunate in that I am a patient at two research institutions, and everything about my treatment, certainly for the last couple years--once we got to the point where the standard treatment for thyroid cancer was no longer working. Everything that has been done since then is really experimental, and I made a decision to go and stick with western medicine because I'm the kind of person who wants to see the research to back it up. So I need concrete data. Show me the data and then I can go along with that. I get bombarded all the--well, this gets back to one of your earlier questions, too, Michael. I get bombarded all the time with people who want me to look at complementary programs and alternative programs, and my response is always, "I'm involved in two great research institutions and I'm not going to second-guess what we're doing." And once I agree and I have all the information this is what I'm going to do, that's what I do and I stick with it. I don't have time to go through and research every alternative that there is in the world. I don't have time to do that.

Michael Samuelson:
Yeah.

Ric:
It infuriates me, actually, that people are constantly bombarding me with their ideas, and it's because they can't deal with the fact that I'm dying.

Michael Samuelson:
Yeah. I think it's probably a couple of things. It's one, that they can't deal with the reality of it. They want to help, and for you guys, it must be difficult at times to have to say to them, "You know, you just really do need to stay with me on this and let me be the one who makes these decisions." Catherine or Karen, do you find it difficult when people want to help and you really would just as soon that they simply let you make the decisions? Is it difficult to tell them?

Karen:
I don't find it difficult at all, and matter of fact, it's pretty much stopped. It's been really easy for me to tell people not to get involved in this, and then what kind of involvement I do want, and expect from them, especially among family and friends and then outsiders who now meet me. Recently I leased a horse because this is how I wanted to spend the last months of my life, and the trainer that I work with, one of the students, the other students says, "How can you work with Karen when you know she's dying?" And Chris said, "Karen is the most alive person I know."

Michael Samuelson:
Yeah.

Karen:
And that's the thing, I guess, that sometimes your family and your friends don't see how much alive you are. It's the outsiders who see it.

Catherine:
Karen, I agree with you. One of the notes that I wrote down was that I am living while I am here. I'm not dying. I try to spend my life, how much or how little might be left, living it. And I want other people to look at me that way, as well, and I want them to live with me. Going back to the issues on people's good intentions, as much as possible from the very beginning, it was hard for me to say, "Yes, I need help." And it was equally as hard to say, "No, this is a place where I don't need your help or don't want your help. Thank you very much." That's pretty much the path that I've learned to take. Everybody has a story about complementary medicine where they know someone who was saved by something out of the ordinary, and you just have to get across to people to respect what you've learned and what you think is right for you to do. And that can be hard to do. The other thing that I've recently talked to a lot of people about is people trying to protect me from things because I'm dying, or because I'm ill. They don't want to tell me things--bad news. So you're kind of left out of the circle of information from your family or friends. And I don't know if anybody's experienced that.

Michael Samuelson:
Do the others--do you feel that kind of isolation, that people are trying to keep you in a bubble and try to protect you because you have enough to be concerned about?

Ric:
Catherine, let me ask you a question. What do you mean, keep information away from you?

Catherine:
I had a friend whose husband was hospitalized, and they didn't want to tell me that.

Ric:
Oh.

Catherine:
Another friend whose daughter's husband committed suicide, but they didn't want me to worry about that, and somebody else called me to ask me for the name of a doctor because their friend had found a lump. Well, in actuality, it was the friend who called me but they didn't want me to worry. So--

Ric:
[laughs] They're protecting you.

Catherine:
So those are the kind of informational things that I have found that people are trying to keep from me, as well.

Michael Samuelson:
Well, Catherine, in fact anybody who has heard the words, "You have cancer," it has an impact on you. But Catherine, how are you able--

Catherine:
I hear it over and over! [laughs]

Michael Samuelson:
You hear it continually! What do those words do to you?

Catherine:
The very first time I heard them, one before that, I always imagined my feeling about hearing those words would be that I would just shrivel up and die on the spot, and I didn't. I immediately said, "What is this, and tell me about it, and where can I get information?" And that was my immediate response, and I think having--at the time my children were really young, I just--I never- -I heard the words and said, "OK. What do I do now?" Period. That was it. I'm going forward, what do I need to do? And each time I hear it, I base it on my past experience. I'm still here. Everybody said I wouldn't be, and I'm still here. And when a year and a half ago they told me I had nine months to live, now I say, "Gee, I've heard that before." [laughs]

Working with Doctors to Stay On Top of Your Disease

Michael Samuelson:
Yeah. Well, it sounds--Catherine, and Karen and Ric also--all of you are very active in terms of gathering information, and what I'm also hearing is that the information has power in terms of your ability to control this or feel that you are part of the control. How do your docs feel about this when you have all this information? Do they view it as being helpful or negative? How does it affect your relationship with your physicians? Karen?

Karen:
Well, my doctor, I mean we work as a partnership. I do not have an oncologist any longer. I basically fired my oncologist over a year ago and have not gone back. Whereas my regular general internist that I see every two weeks, we work in a very, very close partnership. He's very supportive of the information that I bring in. Matter of fact, because my cancer is HPV-related, human papilloma virus-related--his practice sees a lot of HPV virus- related cancers, and he looks to me for information. I'm the authority.

Michael Samuelson:
Yeah.

Karen:
--and that's how we work together.

Catherine:
This is Catherine. One of the things--my doctors have always been extremely willing to work with me. One, because they're not experts in the rare cancers that I've had, and I've learned where those experts are, and they will work with them. They have referred me to specialists themselves, and I have a very strong feeling that if you are trying to work with a doctor who doesn't want you involved with anyone else or isn't willing to listen to what you've discovered, then you need to hike yourself to a new doctor. [laughs] That's my feeling.

Karen:
This is Karen, and I absolutely agree. I mean, that's like such a key thing.

Catherine:
I don't have time for egos.

Ric:
I don't either. This is Ric. My doctor has to be willing to be a partner with me and work as a team, and if he or she doesn't, that's somebody I don't want to work with.

Michael Samuelson:
Again, this is so important, and I'm hearing if from all of you in terms of the control part of it. Ric, in your situation you've had so many problems associated with your thyroid cancer. What's been the most difficult for you, the most difficult time for you in dealing with this?

Ric:
The most difficult time was when my cancer had spread last year, and I had a lot of bone mets [metastases] and I had to do external beam radiation and chemo, which meant also that I had to go work with local radiation oncologists and a whole new medical team. [laughs] That meant that I had to very quickly try to develop a relationship with those medical folks, and I didn't really have time to do that. That was hard actually.

Michael Samuelson:
Yeah.

Ric:
So, I mean, I'm sick from the radiation and chemo, and then I'm also frustrated and exhausted from having to establish new relationships and basically train the doctors [laughs] on how to be a partner with me, and that was really tough. And now I'm started-- this spring I started going through the new monthly chemo that I'll keep on doing for the rest of my life, and I'm having to do the same thing all over again at another hospital. That's really frustrating. The doctors that I have that I've worked with for years, they're great. I have no problem. They're really easy.

Michael Samuelson:
But it is a chronic condition for you guys. These are conditions that you have had to learn and adapt to. Karen and Catherine, both, how about for you guys? All of the things that you've got to deal with the normal parts of life and living, plus you've got all this additional emotional and physical burden. Karen, what do you do? How do you handle it?

Karen:
Well, for me, actually it's been quite an adventure. I mean the first initial diagnosis of cancer, they felt that it was highly curable and they very aggressively went after it. So in that, that initial thing, it was like, OK, I have cancer. And I lost a lot of things: I lost my sense of myself, I lost my body, I lost my job, I lost my income, I lost my car--I mean, lots of things. So now I fundamentally have nothing, and there is something inside of you that's intrinsically there, and that's the part that I found in myself, that there's another part of me. It has nothing to do with the body. So it was building on that faith that I didn't need all the things of life, the possessions. Even my body was, you know, it was pretty much kind of destroyed by the chemo and radiation, the initial round. So in going into the second round of cancer, when the recurrence happened--the chances of a recurrence happening in my particular case were 99 percent not [against recurrence]. And if it did recur, it would recur in the original site. So for it to recur in the pelvic area where the radiation had--I had such high- dose radiation, I mean, everyone was stumped by that. They just couldn't believe it. So now it was about: I didn't want to pursue treatment. I wanted to live a life. So that's what I've been able to do. So I just kind of put that behind me. I didn't really pursue anything else and worked up until--I stopped work in November of 2001, and I've been on disability since. And in that time I set up the Web site. I've gone around the country and lectured on HPV. I've worked with some of the biggest universities and medical centers, with other doctors going on the road, so to speak, to talk about anal cancer, cervical cancer. So in a way I have a job to do.

Michael Samuelson:
Yeah.

Karen:
And then there's been the other things now since I've become sicker or, you know, the cancer is more progressed now. Now it's about-- like I said, I went out and leased a horse. It's like I was so physically active. I can't be that active, but I can have that relationship develop where it's--where people demand so many things from you, or they bring their own emotions and their own stuff into it. The horse doesn't. He just accepts.

Michael Samuelson:
And the horse doesn't tell you the latest treatment and--

Karen:
[laughs] Exactly!

[laughter]

Michael Samuelson:
--and feel sorry for you all the time.

Karen:
“You don't know how stupid you are for making this decision.” It's like, “Well, you know, you should try anything. How can you sit there and just die?”

Michael Samuelson:
Yeah.

Maintaining Relationships with Partners and Children

Michael Samuelson:
And you've got a daughter, too, Karen. How has this affected her?

Karen:
Well, when she first heard, her immediate reaction was--she was just getting married and they had only given me like four months to live. [laughs] She said, "You won't see my babies." And I said, "Michaela, I can't go there." I said, "I really can't go there." I mean, she was so upset that--

Michael Samuelson:
Yeah.

Karen:
--you know, the thought of me not being able to see her children, and then also the fact that I wasn't going to be a part of her life ongoing. And I said, "We just have to stay here in the present moment. We have to be able to live our life right now, day by day by day, and not worry about things in the future, because the future may not be there."

Michael Samuelson:
Well, in your situation, just as I'm sure with Catherine and Ric and others, is that very often we end up as cancer patients giving care to those who are supposedly the caregivers to us, and it has that reciprocal connection to it that we end up taking care of their emotional needs, too. Catherine, you've got two teenage kids- -

Catherine:
Yeah.

Michael Samuelson:
--and my children, actually I have three children, and two of mine were teenagers at the time, and they had their own set of issues to deal with. How about your relationship with your kids?

Catherine:
It's been a challenge. I think the biggest challenge is discerning how much of what goes on is due to my situation, my health condition, and how much is just every day adolescent behaviors and feelings and moods and so forth. So that's something that we struggle with. But in general my kids have had a very positive attitude, and I think they take their cue from their dad and I. We present a positive attitude that we really feel. When the last diagnosis came, my son's reaction was, "Well, gee Mom, you're not going to die in nine months, because they've told you that before and you're still here and you're going to be fine. You've always been fine." So a lot of that is their reaction. And it's hard now. My son has graduated from high school, and he's going off to college in the fall. Again, when I find myself teary-eyed, is it because this is the normal first child leaving the nest, or is it because I'm not sure when I'll see him again--if I'll see him again, when, you know, when he goes? And I try not to go there a lot.

Michael Samuelson:
Yeah.

Catherine:
As Karen said, because you have to live in the moment. But some of the other things I do to get me through--I spend a lot of time with friends. I have my children's milestones to get me through chunks of time. You know, my son graduated from high school, and now my daughter will be graduating from high school in two years, and then it will be my son's turn to graduate from college, and so on. Those kind of things have gotten me through. I belong to a couple of online support groups, particularly for the leiomyosarcoma and the GI stromal tumor, because it's so rare. That's also been one of my big sources of information. So little is known that we take a very, very concerted effort in working with the doctors. There are a few doctors in the world who are the specialists, and so I have a lot of support through those groups. I belong to the--we're lucky enough in Columbus to have a Wellness Community, and I belong to a support group there. All during the years that I've been diagnosed, I've never felt the need for a support group until I got the third diagnosis. [laughs] And that was when I felt that I needed more than my family and friends. I needed people around me at times who really are there and can say, "I know what you mean." And, you know, they really know.

Michael Samuelson:
And staying with children just for a second--with Catherine and with Karen--and your children are older children and, I mean, they're not small elementary school kids. Is there anything you don't tell them with regard to your diagnosis that you would share with, say, your spouse or with friends your age?

Karen:
This is Karen, and with Michaela, with my daughter, I tell her more than I tell anyone else. She has just come through like unbelievable for me and is one of the people that I absolutely trust in telling everything to. The support I get back from her and the love--our relationship has grown exponentially because of my diagnosis. I mean, we've had to literally cram a lifetime--

Michael Samuelson:
Yeah.

Karen:
--into, you know, just into each moment. So, I couldn't be more pleased with how our relationship has grown and where it's gone to.

Michael Samuelson:
Catherine, how about you?

Catherine:
My children were just elementary school age when I was initially diagnosed, and we didn't tell them the depth of things at the time, because nobody really knew either, initially. And as time has gone by and they have matured and grown up, we've told them more factual information. But over time, as they mature and we think that they are able to handle things, we talk more about fears a little bit more, about statistics, because I think they need to know the reality of things. Because I don't want them to feel cheated that they didn't know things when they might have, and they might have changed their actions. You know, one never knows what goes on in teens' minds, but we've tempered things, because they are teens and teens have an awful lot on their minds.

Michael Samuelson:
Yeah. And, you know, kind of keeping with that theme just for a second--and this may be a difficult question, but it's one that I think we always think about as we get older, naturally get older, and our children, of course, hopefully will outlive us, and that is--have you thought in terms of putting anything down in a journal or something such as when your child has their own children, and something you would like them to ponder, to think about? You know how often we'll sit back and we'll say, "Gosh, I wish I had asked my dad this when my dad was alive." And, "I wonder how my dad felt about this or that?" And you have a uniquely both beautiful and horrific opportunity to reflect on, "Gosh, when I was at this stage, I had these thoughts, and I wish I could have asked that of my parents." Have you thought of anything like that, any of you, of capturing this information for a later time, perhaps for them to open on a certain birthday or a certain occasion?

Catherine:
This is Catherine. I'll just jump in here. I've written in a journal, since I was pregnant with both of my children, to them. So, yes, I've kept some of those thoughts in a journal for them, but I do talk to them and share things from my life that I might not have shared things otherwise, and I talk to them about things that I think they might see or experience if I'm not here. So I do talking, and I do writing.

Michael Samuelson:
I would imagine that it's therapeutic for you, as well as being very meaningful for your kids. Ric, I want to get you back into this, and we've been talking about relationships with children--and this is kind of for everybody to think about. But Ric, if you'd jump in with this. How about spouses? What's the relationship that you have in terms of dealing with adult friends and dealing with people closest to you?

Ric:
Well, I'm really lucky. My wife and I have been married over 35 years, so this is a partnership, and we're going through this disease as a partnership. Family, originally, was really tough because they didn't want to hear "cancer." They were in denial, I think, and a lot of friends. Now it's not a problem. My friends are--I've gotten rid of all my friends that were difficult. [laughs] And the friends that are in my life now are wonderful and supportive. There's something I want to go back and say, Michael.

Michael Samuelson:
Sure. Please.

Finding Palliative Care

Ric:

Michael Samuelson:
Mm-hmm.

Ric:
Then when I realized that this is a terminal illness and I now have end-of-life issues, there weren't a lot of resources around. Hospice is an extraordinary gift that we have in our society for people with terminal illness, but hospice comes late in the process. From the time you're diagnosed with a terminal illness until you're ready for hospice, there's a long period of time, hopefully, and our resources are few and far between. It took me a long time to find a group for advanced cancer, because most of the groups were breast cancer or prostate cancer or lung cancer, and the people there didn't want to hear about somebody with a terminal illness. [laughs] They want to live forever.

Michael Samuelson:
But you did find a group?

Ric:
Well, actually, a friend of mine, who is an oncology social worker up there, started the group just so that I would have a group to go to, and it's the only one that I know in this area. So, at every single stage that I've gone through, whether it was going from cancer at the time when it's curable, to suddenly to a cancer that's very aggressive, to needing palliative care, to facing end- of-life issues. At every one of these stages there was not much around, and I had to be the advocate to go out and help start them and to create them and to go to the medical community, and then had to say, "OK. This is not good enough." That's really been the hardest thing. That's been tough.

Michael Samuelson:
I think you've brought up a very important issue. There are people newly diagnosed or people who are recovering; those individuals who are dealing with the possibility of recurrence, but you guys are in a particular area. And I'll ask Ric, but I'll ask both Karen and Catherine, as well. For you, what are the kinds of resources, the kinds of information, the kinds of specific support that you need? Because it's not at a hospice situation, and it's not with how do you deal with being told you have cancer. You are facing every single day with the fact that you need to put as much life as you can in every moment that you possibly can. But other than just the philosophical issues, what pragmatic issues do you need help with? Karen?

Karen:
I agree. We live in a culture, in western culture, that does not want to talk about death and doesn't have anything to support those of us who are dying at younger ages, or even for the elderly who are dying. You know that you just want to shove it away. Everything is about youth and looking great until you're 900 years old! So, for someone that's 49 or 56, how young all three of us are--

Michael Samuelson:
Mm-hmm.

Karen:
--we're facing death, and yet there's nothing. Not even within a Wellness Community. The Wellness Community is all about fighting cancer. That's their logo--Wellness Community, you know, fighting cancer. So what happens when you decide not to fight it anymore, and you just decide to accept the fact that you're dying and there's no real resources out there except for like hospice, but that's at end of stage life. You know, when they're coming in and you're bedridden and that kind of thing. In the interim you're trying to live, yet there's factors that come in. Emotions, fears, you know, just things that you'd like to talk about, to share with other people that maybe--and you don't know other people that are dying. There's no resources out there that link you together. And it doesn't even have to be about cancer. One of the hospice homes-- I'm looking at hospice homes right now to go live in, and one of the hospice homes that I'm looking at is an HIV and AIDS hospice home, because in that environment I would be with other people my age--

Michael Samuelson:
Mm-hmm.

Karen:
--rather than going to an old age home or a hospice home where everyone's elderly. And where I went to look at those, one of them said to me, "You don't belong here. You're too young."

Michael Samuelson:
Yeah.

Karen:
You know, "You can't come in. It's against the law for you to come in here."

Michael Samuelson:
Yeah.

Karen:
"You're way too young. I could be your mother."

Michael Samuelson:
[laughs]

Ric:
You know, really, what it comes down to is we're educated in school, we're trained in our jobs, our parents train us in living, but you know, nobody trains us to die, and real basic nuts and bolts issues like financial planning--developing your advance directives. What do you do with your body after you're dead? Making decisions about what kind of ceremony, ritual, if you want anything, and talking about that with your family. Who trains us to do that? Nobody.

[Editor’s Note: ACS I Can Cope program has a workshop entitled “Taking Charge of Money Matters” that addresses money issues that arise during or after a person's cancer treatment. To find out if Taking Charge of Money Matters is available in your community, call us toll-free at 1-800-ACS-2345 or online http://www.cancer.org]

Michael Samuelson:
I think that what you guys have done is brought up a very, very important issue, and this is that whole period of time and how did you plan for it and where do you go for resources? But Catherine, have you found any resources?

Catherine:
I have found some, and I guess it's like how do you live while you die--

Michael Samuelson:
Yeah.

Catherine:
--is the question, and in regards to the Wellness Community, I think that perhaps experiences are different. I was fortunate--or unfortunate, I guess is really the word--to fall into a participant group in which everyone was in a long dying period.

Michael Samuelson:
Yeah.

Catherine:
And we were all learning how to die while we're living, and we ranged in age from very early forties to seventies, and it was very hard for somebody to try to come in who was a newly diagnosed person [laughs] and didn't fall into our criteria. So that has been for me, as I said, I was lucky or unlucky to be in a group that just happened to work for me in this stage. But because I'm involved in that group and we have been searching and asking and talking about the same issue, we have discovered some resources. Some things are the online support group. We found--I found a wonderful book that actually is like a book on a checklist for living or for life, and it really is a kind of how to arrange a funeral, how to tell people where your papers are and all those practical things that you can put in this book and then walk away from it and do those things with your daughter or with your wife or your husband. And so, no, there aren't any real guidelines out there, but there are some helps.

Michael Samuelson:
Let me move on and ask you guys another question that deals with support systems. I'm sure you've experienced--and I've already heard that there are some people who provide wonderful support, and there are others who really don't know what to do, and there are still others who kind of bumble and stumble along. Have people been supportive in general, or have people kind of disappeared?

Catherine:
I've experienced, in fact I've had people--and like Ric says, I've just gotten rid of those people out of my life and said, "I can't worry about them or their inability to handle my disease or my diseases, and I need to go." And yet I've had experiences that have been so wonderful that I just can't imagine where people have all this hidden--this goodness in people. When I went through my leiomyosarcoma diagnosis and had surgery and radiation and one of the worst chemo regimens a person can have, I was in the hospital ten times in six months. People from my daughter's dance school and my employer got together, and for nine months brought meals, full meals, to our door five days a week.

Michael Samuelson:
Wow.

Catherine:
For nine months!

Michael Samuelson:
That's wonderful, and those are the stories that we like to hear about. For the other guys, have you had people who were around all the time and then when the diagnosis became terminal and that word along with cancer, kind of, they didn't show up anymore?

Ric:
You know, except for some people through work who were not friends. I mean, they were work friends, work colleagues. Some of those people have disappeared, but the people that I have always considered friends, everybody is still there. I mean, they've all been extraordinary. The difficult thing for me has been learning to ask for help or learning to accept help when people offer, and they're always there. I mean, anything that they can do every week, but they also--they're not pushy.

Michael Samuelson:
Well, fortunately, that's what we hear most of the time, and then for a lot of people who don't know, who do disappear, it tends to be because they're uncomfortable--

Ric:
Right.

Michael Samuelson:
--and they don't know what to do.

Making the Decision to End Treatment

Michael Samuelson:
I want to ask you a question. Is there a point in time where you feel that you just might say, "That's it"? No more searching for that new cure." You don't want to be the miracle man anymore.

Ric:
That's the question. For me the question is, "When am I going to know enough is enough?" And I don't know. I have no answer for that. But what I think is, as long as today is a good day and my doctor has come up with some new six-month chemotherapy that they want to try, I'll probably do it. If they ask me on a bad day, I probably won't. I don't know. My doctor says that I'm going to know when I'm tired and I don't want to do anymore. I hope he's right, but I don't know. I don't worry about it. I mean, my goal is living well every day, and whether it happens six months from now, well, I'll deal with it then.

Michael Samuelson:
You know, when we think about the process of living and we think about the process of dying, we also either believe ourselves or someone tells us that it isn't just about us. It involves family, as well, and friends. Catherine, what role will your family play in any decisions that you make with regard to stopping, and what do you want from them in terms of helping you along those lines?

Catherine:
The biggest player in my life is my spouse and then my children, and those are the most important people that I will look to for input. But I have found in my group at the Wellness Community, as I said, that the make-up was such that I have lost some of those people and they have known and they have been in communication with their family all along, and when they were ready to stop, when they knew that the road was at an end for them, it came to them. They knew, and it wasn't a surprise to their family, and I hope that that's the way that it will be for me. The hardest thing I have had to deal with is when they said for this type of lung cancer there is no treatment. And I'm ready to go!

Ric:
Hmm.

Catherine:
Give me whatever you've got!

Ric:
Yeah.

Catherine:
I'll take it! And when they say whatever I've got is palliative, and, "Right now you're asymptomatic. I've got nothing for you." That was hard for me to deal with

Michael Samuelson:
Karen, you've reached a decision to stop treatment. How did you respond to your family when they thought that perhaps you were giving up or you had made that decision?

Karen:
Oh, they absolutely thought I was giving up when I decided that I did not want to do chemo again. And I knew that if I did chemo that--I mean, I did two rounds and in that two rounds, I know absolutely if I had gone for a third round--I was scheduled for eight--if I had gone for a third, I was going to die on the third round. The first two were so horrendous that I had lost so much body weight in two rounds that the third would absolutely kill me, and I knew that. So at that point I went and told everyone that I wasn't going to do it anymore, and I would just let whatever happened happen. And you know, the oncologist would fight with me and say, "No, you have to keep this up. You have to go through your eight rounds," even though the oncologist I had at the time didn't think that I would live through the eight rounds. That treatment would kill me first. But she still insisted that I at least give it a try. But my friends and family thought that I had given up--that I just was going to go home and lie down and die. And I said, "No, that's not it at all!" I said, "I know who I am. I don't believe that I'm going to die within the four to six months. I think that I'll live. I feel well." I felt fine. I mean, without the chemo I felt fine. So once the chemo was out of my body again, my energy level picked up. I went back to work and I worked for another year and then went off on disability leave, and even that was--my company was one of those dot-coms and they were in financial difficulty. So what they did for me was they turned around, the CEO, and said to me, "Karen, go out on disability, because we have a really good disability override. And that way you'll be taken care of financially. If we go out of business, the disability insurance will disappear, and so will your benefits. And so we want you to go out now, and that way you're covered. You know, you start your disability and you're taken care of."

Michael Samuelson:
Yeah.

Karen:
So that was like a really intrinsic part for me was the support of the company that I was working for, and then as my family and friends saw what was happening, they came on board. And then, now it's been--I mean the recurrence was diagnosed in December 2001 and here I am almost two years out [laughs], you know, from a four- to six-month--

Michael Samuelson:
Yep, right.

Karen:
--you know, terminal.

Michael Samuelson:
Well, you know, you brought up--that's a very important point and one that we could actually spend a whole show on, the whole insurance issue. Catherine, I think you mentioned a book earlier. What was the name of that book?

Catherine:
I tried to find it real quick. It's called--it's either Checklist for Living or Checklist for Life.

Michael Samuelson:
OK.

Catherine:
And it was actually written by a young woman whose father died, and it was brought on by not knowing where anything was.

Michael Samuelson:
Yeah.

Catherine:
And you know, what was wanted, what was needed to do, and so forth, and so she wrote the book.

Ric:
I'd love to get the title of this book.

Catherine:
And I will get it to you.

[Editor’s Note: IN THE CHECKLIST OF LIFE: A Working Book To Help You Live and Leave This Life by Lynn McPhelimy]

Michael Samuelson:
Yes. I think that's an incredibly valuable--just the thing that Karen brought up about the insurance.

Catherine:
Yes.

Michael Samuelson:
And the idea of kicking in on disability when you've got a precarious kind of situation with an organization, where it might collapse. Those kinds of things are worth their weight in gold.

Finding What is Important at the End of Life

Michael Samuelson:
Let me move to this question, or this discussion point. All three of you have brought it forward beautifully, and that is the whole idea, that life is a process of moments. It's not years. It's the magic, and it's what we choose to do in terms of the living part of life as opposed to the dying part of life. Karen, is it difficult for you in any way to reflect back on your life leading up to your first cancer diagnosis? Does it bring you comfort, or does it make you sad?

Karen:
No! Actually, I don't know if we're supposed to talk about, like, I think that when you're facing a terminal diagnosis, I can’t imagine that you can't find some spiritual relief. So in my particular case what sounded right to me was Buddhism, and that has been like a constant source of comfort and also exploration for me spiritually in the dying process. So, no, when I look back at my life I don't have any regrets. I've lived a good life. I mean, and I continue to live a good life. It's rich and it's full, and there's not one thing I would change. Not even the diagnosis that I have would I change, because in having cancer it opened up all kinds of new adventures and new doors for me and new ways of looking at myself and looking at life and living. It's like with having the diagnosis of being terminal, I finally awoke to my life and I began to live life instead of just going through the motions.

Michael Samuelson:
Catherine, how about you? What is your reaction when you think back in terms of what life was like before?

Catherine:
I think that it's--[sighs] I spent this past weekend, several days actually, looking back on a lot of aspects of my life due to a trip I made, and I think if nothing else, this whole experience of having cancer has forced me to examine things in my life and to deal with issues that I may not have dealt with as a younger person or at the time, or that I might not have dealt with for ten more years. And I have looked at those issues and worked on things and let them go, and they no longer--bad things, dark things--no longer cloud up my life. And I can look back on just absolutely wonderful times and wonderful memories, and any dark things don't hurt me anymore. So that's been a thing that's caused me to examine and deal with and move forward, and it helps me in my philosophy of determining what's important: make your choices and don't look back.

Michael Samuelson:
You know, all of you have a unique--and you'll understand when I use the word "gift," and I don't mean it in a frivolous sense. I mean it in a unique, unexpected peek. There is obviously some irony associated with this term, gift, associated with the diagnosis of being terminal. When you think about your kids, Catherine, what do you want your children to remember about you and your life and your struggles with this cancer?

Catherine:
That I faced it head-on. That I wasn't afraid to ask for help when I needed it. That I could recognize that I needed it. That I fought for what was important to me. That I had things that were of value to me, and I'm not talking at all about material things, as all of you know. That I made my decisions based on my values and always moving forward. Always moving forward.

Michael Samuelson:
Ric, what about the vividness, if you will, of the every-day aspects of your life, what is important to you? What do you try to hold onto most, of what there is here for you?

Ric:
Paying attention. I mean really paying attention and truly living in the moment. You know, diagnosis of cancer really has not changed anything about what my life is about. It didn't change my values. It didn't change my beliefs. You know, you hear people that they suddenly got their priorities straight, and they were enlightened-- and, you know, none of that happened for me. Cancer was just--oh well, yesterday I didn't have cancer, and now today I have cancer. And then, you know--oh, wake up one morning, and oh, now it's terminal cancer. Who I am and my values hasn't changed at all. Except now I really understand why it's important to live every moment, every day. I believed that before, but I didn't really understand why. Now I understand why.

Michael Samuelson:
Well, I think what you just said about paying attention, and it sounds so--those are just a couple of words that we string together, but it really means everything, doesn't it?

Ric:
It does.

Michael Samuelson:
It's being totally aware of where you are at any given moment. I'm going to ask you a question, and I'd like each of you to kind of think about it for a second and respond to it. The value of these shows, there's a lot of value. Hopefully you're getting value. I know that I am, and people who come and they'll listen to the archive or they'll read a transcript. I'd like you to think for a second and answer this question: what would you say to someone who was just told that they were terminal? That they had X amount of time to live. Catherine?

Catherine:
I think that I would tell them to live and that nobody can tell you how much time you have, for the very first thing. No one can determine how long you have to live--and that however long you are here, to live your life as fully as you want to and as you should and as you are able to.

Michael Samuelson:
Karen, how about you?

Karen:
I think that when someone's first told that they're terminal, there is a huge visceral reaction to that, and so in that case I wouldn't say anything. Simply I would just be there for them and hold as much compassion in my heart as I am capable of having, because at that moment I don't think that anyone is capable of feeling anything. They have to go through whatever physical and emotional trauma that diagnosis is going to put on them at that moment, and then afterwards to be available to talk. I just know, like when I was first told that I was terminal, it was like bullets hitting me. I mean, at that point I couldn't have heard a thing that anybody was saying.

Michael Samuelson:
Ric, how about you?

Ric:
That one's hard. I mean, Karen's right, but I think the most important thing I would say to somebody is to really understand what your diagnosis means, and at every step of the way keep asking your doctors how this disease will impact your ability to live well until the end of your life. To have a dialog about that, because we need to understand that our cancer and our treatment is going to make us tired. It's going to make us sick. But that doesn't mean that life is over, just because your diagnosis is terminal. You need to be able to play. You need to be able to enjoy time with the people that we love most, and the only way that we're going to be able to do that is to really understand what's ahead for us.

Michael Samuelson:
And so, I'm hearing from you guys just a vast amount of valuable information around this. Everything from say nothing and listen and let the person absorb it, to recognize that there's value in every minute and to celebrate the value of the moments in your life, to also, and part of what you're saying, Ric, is get information. Make sure that you stay on top of this so that you've got as much information as you can. I want to ask you the other side of that question, and that is, if I came up to you and I said, "Listen. A loved one or a spouse or a dear friend of mine was just told that they're terminal. That they're dying of cancer and that they need to start thinking in terms of weeks, months, or whatever it may be, but it's coming soon, what can I do as a support person? How should I respond? What should I do?" Catherine, what should I do?

Catherine:
I think you need to take your cue from that person. I think you need to do what they ask you to do when they're ready for it. I think you have to learn to anticipate some of their needs, and you need to educate yourself, as Ric said, as much about their disease as they need to. And to have information available when they ask for it. I think some of the things I've heard in some of my groups are that people don't anticipate, you know, support people can anticipate our needs, but they can't always anticipate them. So sometimes it's asking, simply asking, "What do you need right now. What can I do for you right now?"

Michael Samuelson:
And Karen?

Karen:
I agree with what Catherine just said, but also the ability to just be there. And when I say just be there, it's sometimes, you know, now I don't feel well all the time. You know, the cancer's definitely having an effect on me now, and a lot of times I need to lie down. And it doesn't mean that I don't want company around me or people around me, but it's like if I'm lying down it doesn't mean you need to go out grocery shopping or go and fix something or, you know--it means that you could sit there on the bed with me or just lie on the bed with me and be there, and sometimes to me that would be the most comforting thing, and it's one of those things I don't get. People have a tendency to, you know, like, "Oh, she's not feeling well. Let me go do something. Let me go cook dinner." Even though they know I won't eat it. Or, "Let me go this place or that place," or, "Let me fix this." And it's like, "No! You don't have any idea how much comfort it would give just for you to just be in the room with me."

Michael Samuelson:
Yeah. And Ric, the same thing. I'm a close buddy of yours. What can I do?

Ric:
You know what, Michael? I can't really answer that for anybody else, but I can tell you what I wish I could have told all my friends two years ago when my diagnosis became terminal, and it was, "Please tell me the truth about how you feel every time we're together."

Michael Samuelson:
Yeah.

Ric:
And what's been difficult is that I have friends who dance around the issue of the fact that I'm terminal. I was walking through my garden the other day and I was looking at a Japanese maple that I planted last fall, and I said to this friend of mine who's a gardener, I said, "You know. I love this tree. I'm not going to live long enough to see it mature, but it's a beautiful tree." And she got really angry with me. [laughs] And this was just recently, too. And I was surprised, and she got angry and she said, "You know, you're always talking about dying. It's always in your conversations." And I'm like, "Yeah, it is in all my conversations, because I want all my friends to know that I want you to talk about how you feel. That we have to do that all the time." And later she got back to me and said, "You know, my problem is my denial. It's just hard. I'm grieving." Well, I wish I could go back to every one of my friends two years ago and have the conversation, "I need you to be truthful with me about how you feel all the time, and every time we're together ask me how I feel, emotionally, psychologically and physically. "How are you?" and really be there to listen.

Michael Samuelson:
Well, I think the value of this has been phenomenal. We've kept you guys a little bit longer because it has been so important and valuable. I'm going to keep you longer just a second, and I'm going to ask you a question. I'm not--please understand where this question is coming from. There are all kinds of ways to approach life issues and death issues, and I'm hearing a lot of very positive things coming from you guys, and it is indeed wonderful to hear. I also appreciate the pain, and I know that there are the moments where you either scream inside or you want to scream out loud, and I bless and I understand those moments. If there is a gift associated with knowing that you're going to die and it's coming relatively soon, what is the gift? Catherine, is there a gift, and if so, what is it?

Catherine:
I think it's the gift of awareness of every moment and the preciousness of your time and your family and your friends and those who are important to you. It's, to me, it's awareness. It's much more constant than it was before all this began.

Michael Samuelson:
Karen, how about you?

Karen:
It's the same thing. I mean, in dying, it's like you really begin to live, and it's awareness but it's also--I mean it's really about living. I mean really living very presently in your life and letting in--it's also being able to very clearly see [laughing] what's bullshit and what's not anymore.

Michael Samuelson:
Yeah.

Karen:
And going away from the common, mundane kind of things in life and saying, "Oh, that might have affected me in such and such a way in the past, but now it's so petty and insignificant. Let's go to this thing which is much more, you know, full of life and full of living and wonderful than the other types of experiences are."

Michael Samuelson:
Yeah. Ric, is there a gift?

Ric:
There is. In addition to what Catherine and Karen said. For me, the gift is often time. I have time to clean my closets. I have time to say to people the things that I need and want to say. I have time to take care of my photography. I have time to do all the things I want to do before I die. And the newspaper every day teaches us most people don't get that gift, and it's the best gift that I have.

Michael Samuelson:
Well, I tell you, we're going to go ahead and wrap this up. I could go forever with this. The inspiration and the strength and the knowledge that you guys have and that you're imparting for all of us is--

Karen:
Michael?

Michael Samuelson:
Yeah?

Karen:
There's one other thing I'd just like to say real quickly. I mean, it's two books that have been really instrumental. It's going back to what Catherine was saying earlier.

Michael Samuelson:
Uh-huh?

Karen:
One of the books is called, Talking About Death Won't Kill You. It's a new book.

Michael Samuelson:
Oh, I like the title.

Ric:
I love the title!

Karen:
I love that, too.

Ric:
That's great.

Karen:
And then the author is Virginia Morris. It's just been published this year, and it talks about all kinds of deaths, but it talks a lot of cancer. But it talks about insurance issues, talking to your family, writing an advance directive, you know, all of those things.

Michael Samuelson:
Oh, good. And the other book?

Karen:
The other book is Steven Levine, Who Dies?

Michael Samuelson:
It's called Who Dies?

Karen:
Yeah. Who Dies?

Catherine:
And he has written a couple of other books, also, that are really good.

Ric:
Terrific books.

Karen:
Yeah.

Michael Samuelson:
Well, listen. I hope that our discussion has helped you with some of the issues that may be part of your life, and I want to thank our guests, Ric, Catherine and Karen, for their willingness to share their stories, thoughts, feelings, and a part of their lives with us today. I hope that some of their experiences will help you think about and talk about your own concerns in healing ways. I encourage you to listen to others and other discussions we have available on the Web site. The Web site is www.cancer.org, and on the phone by calling 1-877-333-HOPE. For the American Cancer Society's Cancer Survivors Network, I'm Michael Samuelson, wishing you a great day, today and every day. And guys, I thank you so much for all of your energy, for your sharing, and bless you all.

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