Dealing with a Terminal Diagnosis: Dying Well

Recorded November 08, 2001

Greg username: gnail gnail's Web page	Jeanne username: geeknee geeknee's Web page	Vickie

Welcome and Participant Introductions

Dr. Harpham:
Hello, and welcome to the American Cancer Society's Cancer Survivors Network. I'm Dr. Wendy Harpham, your host. Today I will be talking with three cancer survivors from across the country who are dealing with cancer with a poor prognosis. First, let me briefly introduce our guests before we talk about issues such as: how to stay positive in the face of terminal illness; keeping up with the newest medical advances and treatments; making sure you are getting complete and accurate information from your doctors; preparing for death; using your time wisely when you're not sure how much time you have left; finding people you can talk with and share problems and concerns with; and how to deal with the feelings of others, like family and friends.

Our first guest is Greg, a 40-year-old single man from Missouri. In 1999, he discovered a mole that developed a covering at the bottom of it. At first he ignored it. At the same time, however, he developed a seizure disorder and a degenerative spine disorder. Greg went to see a doctor about the seizures, and the doctor noticed the mole and suggested that Greg have a biopsy. He went to a dermatologist who diagnosed it as a stage III invasive nodular melanoma. Greg was very proactive, and investigated the possibility of participating in a clinical trial. He felt strongly that he wanted to get his best shot at this tumor. Because of some spots on his lung, he was unable to enter the trial and underwent a surgery to remove the original tumor, followed by surgery to remove the affected lymph nodes. Thirteen nodes were removed in all. Hi, Greg, and welcome to the show.

Greg:
Hello, and thank you very much for asking me to be on this show.

Dr. Harpham:
Joining us now is Vickie. Vickie is 48 years old and lives in Georgia. In 1998 while showering, she discovered a lump on her breast, which was diagnosed as breast cancer. She went through chemotherapy and radiation therapy. She then took tamoxifen and then arimidex, but eventually had a recurrence of the cancer in 2001. It metastasized to her bones and her skin. Vickie is currently taking Taxotere® and aredia for bone strength and some pain medication. Vickie is married and has two adult children. Hi, Vickie.

Vickie:
Hi.

Dr. Harpham:
Welcome to the group today.

Vickie:
Thank you. I appreciate you having me on. Looking forward to the conversation.

Dr. Harpham:
Me too. Our next guest is Jeanne. In 1994 Jeanne experienced soreness of her breast, did a self-exam and discovered two dimples. A doctor thought it was an infection, so gave her antibiotics and suggested she return if it didn't clear up. She returned four months later and had a biopsy that revealed breast cancer. Jeanne underwent surgery to remove the breast and was told that that was all the treatment she needed. No chemotherapy was offered at the time. Five years later she developed visual problems and pain in both her sides. A CT Scan revealed metastatic breast cancer and other tests showed that it had spread throughout her body. It was diagnosed as a stage IV incurable breast cancer. Jeanne has been treated with bone strengtheners and she underwent radiation for her eyes, which caused the loss of part of her vision in one eye. Jeanne is 60 and married with adult children. Welcome, Jeanne, and thank you so much for joining our group today.

Jeanne:
Thank you for having me.

Having a Positive Attitude Doesn't Always Mean Being "Happy"

Dr. Harpham:
The first topic for today's discussion is "attitude". Attitude is a major topic in cancer survivor groups because many people talk about the importance of having a positive attitude, which can be a very difficult feat in the face of cancer where the prognosis is not good. Let's start with you, Jeanne. How has attitude played in survivorship?

Jeanne:
I think that it helps to have a positive attitude because it makes your days worthwhile. I'm not convinced that it will change how long I live, but it will certainly change the quality of that life.

Dr. Harpham:
What do you mean when you say, "positive attitude"?

Jeanne:
Planning ahead, finding the good in your life. Finding what I call the small miracles in your days. Making your days good rather than sitting around and thinking about the fact that there are things you can't do, that there are things that won't happen for you, that you won't be there for. That you can try, and you can't do it all the time. It's a work in process.

Dr. Harpham:
Talk about that; that you can't do it all the time.

Jeanne:
Well, it's unrealistic to expect to be happy all the time about having a terminal disease. You have to allow yourself, I think, that time when it does get to you. I like to think that if you just kind of say, "Okay, I'll give it this much and then I'm going to move on." I think that if you make a cancer patient feel that they can't live without a positive attitude, then it's very hard. Because when it does get you down, you feel like you're defeating your own body. So, you have to allow yourself the time that it does get to you, and you're not--you can't be positive, and then pull yourself back up again when you can.

Dr. Harpham:
Did the times that you had a down day or a blue day, was that a problem for your family or your friends?

Jeanne:
Of course it is. And I think I am more able to put on a happy face when people are around, particularly certain people; my children, my grandchildren. You quickly learn that if you want to have people around [laughing], you'd better have a happy face most of the time. This is a very scary disease, and you will almost find that your life is going to be more pleasant, if you don't share those bad days with others.

Dr. Harpham:
And who do you share the bad days or the bad moments with?

Jeanne:
Other people in the same situation. They are about the only ones that really understand it. And I have a few friends who have had breast cancer, who are not at my stage, but are able to talk realistic with me--let me go to the bad places once in a while.

Dr. Harpham:
How long do you usually stay there?

Jeanne:
Not that long. Not that long. Not if you can find somebody to talk about it, because you quickly start realizing that that's not how you want to spend any of your precious time.

Dr. Harpham:
Now, you talked about having a choice; about looking at the bad side or looking at what good sides there are, meaning, what you have, not what you've lost. Are there any things that seem to trigger the blue spells or the down days for you, Jeanne?

Jeanne:
How I feel. I tell my doctor to keep me feeling good.

Dr. Harpham:
Meaning physically?

Jeanne:
Right. If I'm not in pain, if I'm doing pretty well physically, then the mental part comes with it. If I'm having pain for several days in a row, when I was dealing with a lot of nausea, that kind of thing, then it's very hard to bring yourself back up. But I find that if I'm feeling good the rest of it comes with it.

Dr. Harpham:
And many times your physical condition is something you can do something about when you communicate with your physicians?

Jeanne:
Right.

Dr. Harpham:
Vickie, how about you? How has attitude played into your survivorship?

Vickie:
Well, I agree with Jeanne that it's very important to try to have a positive attitude as much as possible. But like she also said, there are times when you just can't have a positive attitude, but it's usually short periods of time. But I think, once you first deal with that initial diagnosis, that's the biggest shock. I think after that you can kind of deal with some of the things about death. You can kind of go on and start trying to live your life and be as happy as you can possibly be.

Dr. Harpham:
You know, I find one thing that helps is separating positive attitude from the word "optimistic" or "happy". A positive attitude does not necessarily mean upbeat or happy or optimistic, expecting everything to have a good outcome. It's an attitude that helps you, and for many survivors a positive attitude, for the most part means, hoping to land on the good side of bad statistics, that sort of thing. But also accepting the blue times because it allows you to move forward.

Vickie:
I agree with you. I think I had a problem with that at first, because when a lot of people kept telling me, "You need to have a positive attitude to have a good outcome of your disease," it wasn't professional people that told me that. It was a lot of family and friends, and that got me very discouraged at first. Because I thought it meant I had to be happy, try to be happy about this, and I couldn't be happy about having metastatic cancer.

Dr. Harpham:
It's a normal reaction to be sad, angry, afraid when you have metastatic cancer.

Vickie:
Yes, it is.

Dr. Harpham:
The other thing is there's an implication that you have metastatic cancer because of your attitude.

Vickie:
That's true.

Dr. Harpham:
And it puts a burden on you that somehow, not only do you have this, but it's your fault.

Vickie:
It really does, and that's very discouraging to the person who has been diagnosed with a stage IV cancer.

Dr. Harpham:
So how did you deal with that? Did you actually talk to these people about the burden they placed when they talked about positive attitude, meaning being upbeat all the time?

Vickie:
I did. A lot of people still don't understand that though. And some people, you just have to let them go on and believe what they want to believe [laughing] and just go on with your life. Because you can't get everybody to be understanding about your problems.

Jeanne:
This is Jeanne. Can I say something about that?

Dr. Harpham:
Absolutely, Jeanne.

Jeanne:
You know, I think sometimes that the positive attitude is needed by the person that's telling you that. Usually the person is a family member or friend and they need your positive attitude. I almost think part of that comes from its going to help them if you have a positive attitude, because it's so hard for them to see you down.

Dr. Harpham:
Greg, what do you think about all this?

Greg:
I was just going to jump in myself. I was going to say that basically, I agree with everything that's been said. I think that when I first found out that I was diagnosed with metastatic melanoma stage III--and initially when you find out when you have cancer--how can you be positive?

Dr. Harpham:
Well, let's use the word "optimistic" or "happy".

Greg:
How can you be happy? When I hear "positive attitude", my brain immediately thinks, "happy". So when people initially would say, "You have to have a positive attitude," I'm looking at them thinking, "You're not in my shoes and how could you be happy about having metastatic cancer?" And so initially it was hard to kind of put my arms around. I think now I too, have separated in my own mind "positive" meaning "happy" versus "optimistic". I'm very optimistic about my future, and I'm also very happy in the moment. So, for example, I think to be positive, I look for the good in everything. I try to laugh at things. I try to find, as someone had mentioned, you have limitations, but within those limitations, I think it's important to try to find the good in those things and the humor in those things or you will be very depressed.

Dr. Harpham:
Now, have you had moments or hours or days of being blue, being down, being pessimistic, Greg?

Greg:
Absolutely!

Dr. Harpham:
Tell us about those moments--

Greg:
[laughs]

Dr. Harpham:
--and how they fit into your understanding about attitude and the role of attitude in how you do that sort of thing.

Greg:
Well of course publicly, I never have those moments. [laughs] No, I think we all have those moments. I think they come and they go. Initially, when you're first told that you have cancer, I think that you have a lot of those feelings. And I think at some point then you start kind of pulling yourself by your bootstraps, and try and get out of that.

I also found, it was mentioned about trying to keep other people positive. I also found that your friends and your family members, that you have to keep them positive. And here you are, you're the patient that's got the problem, who should be the one that's sad but you've got your family and friends standing around, and they're the ones that are upset or worried about you. You have to put on this happy face to make them feel better. I think you really have to dig deep inside yourself to do that.

I have tried to do that by doing a few things initially. I found myself just dwelling on it and I knew that I couldn't do that. So, I got myself out of the house and I started to go to the comedy shops where I would hear humor and I was pretty much forced to laugh. And I tried to do things that would keep me happy or laughing.

Dr. Harpham:
So you took action. You took steps to help trigger happier feelings?

Greg:
Definitely, yes!

Dr. Harpham:
--and to get out of that blue mode.

Greg:
Yes.

Dr. Harpham:
What do you think is the healthiest attitude? We talk about melanoma as being an immune disease, and people talk about laughter and happiness boosting your immune system. So, how do you in your own mind put together; dealing with your attitude, being honest with yourself, and worrying about how your attitude is affecting your melanoma?

Greg:
I used to believe that attitude isn't going to change my outcome. You have certain medical conditions and how could your attitude affect that? I believe, since then, and I have also seen studies that would discuss attitude and better outcomes with that. I want to believe that that's the case. And even if it is or is not the case, I believe that it's very important to myself and to those around me to have a better attitude than having a negative attitude. And I do believe that affects your outcome.

Dr. Harpham:
Well, the key word is "affect". It affects but it doesn't necessarily control it, but it really does affect it.

Greg:
And it definitely affects the days that you are around and awake [laughing], because I don't think any one of us wants to sit around and feel miserable. So if you can find a way to be more optimistic or to be more happy, it's definitely a good thing in your daily life.

Dr. Harpham:
So, by choosing your attitude, you are shaping the quality of your days?

Greg:
Correct.

Dr. Harpham:
And that is within your control.

Greg:
Correct. And I think you have to make a conscious effort to do that.

Dr. Harpham:
It's work.

Greg:
It is.

Making the Best Decisions about Your Health

Dr Harpham:
Well, switching to a different topic; all three of you have dealt with cancers that required advanced treatment. How do you keep up with medical advances, new treatments? Jeanne?

Jeanne:
Most of my information has come from the Internet. I became involved with online support groups when I got a computer and got online about four years ago. I was poking through the Internet sites and in talking to other women and discussing their treatments and their outcomes. I became much more familiar, since I had not had chemo initially, with the different chemos and with the newer treatments and with the newer things that were coming out. That helped me a lot when I was diagnosed stage IV.

Dr. Harpham:
How did it help you?

Jeanne:
It helped me to make decisions. I am on Arimidex. I'm on hormonal treatment. I'm just not on chemo, which is what most people think of when they hear cancer. The hormonal treatments can be very successful if your cancer is hormone-positive. I am also HER-2 positive, so that when the day comes that these are not working, I can take herceptin, which is one of the newer treatments. I am familiar with Taxotere® which Vickie is on, and Xeloda® because friends of mine have been on those treatments.

Dr. Harpham:
So, obtaining information taught you about options available to you in the future?

Jeanne:
Right.

Dr. Harpham:
And that helped calm you and make you more hopeful?

Jeanne:
Yes. And I saw women who were surviving for long periods of time with stage IV breast cancer. Even the ones that were so scary to me; liver and brain and lung, that you think just are the end. And then you find an actual human being who is living a number of years with those situations.

Dr. Harpham:
So, those role models, again, calmed your fear--

Jeanne:
Yes.

Dr. Harpham:
--and gave you hope?

Jeanne:
Yes.

Dr. Harpham:
What about you, Vickie? How have you kept up with the medical advances?

Vickie:
Well, I joined a support group and I talk with a lot of other women that are in the same situation that I'm in. I read a lot of studies, medical studies, that are being done for stage IV cancers and especially metastatic breast cancer in particular. And, I also there is an online computer site. I think it's just a stage IV cancer board, and I go in there and talk to a lot of women and see what they're experiencing. Like Jeanne said, you get a lot of hope from that because a lot of people are given two to three years when they're first diagnosed with metastatic breast cancer. That's just with all the statistics gathered together. But they tell you at the same time, that with everything; all the medications that they're coming out with, that you can possibly have a lot longer survival time. I'm finding that out from talking to other women, just like Jeanne said. They're living a long time past what the statistics say. So that helps me a lot.

Dr. Harpham:
Greg, how about you? How have you kept up with medical advances and treatment for melanoma?

Greg:
One way, as was mentioned earlier, was the Internet. Definitely there is a lot of good information as well as poor information, but a lot of good information on the Internet.

Dr. Harpham:
How did you sort them out?

Greg:
Well, I found that you really need to go to the most reputable sources, sources that we're all pretty familiar with, and to kind of rule out the ones that are not major players in cancer.

Dr. Harpham:
Now, did you share what you learned with your oncologist?

Greg:
Yes. And as a matter of fact, let me get to that. Internet--definitely for information gathering. I also went to support groups. Actually there is a melanoma support group in Kansas City, or there was, and we shared information there. I also went to any seminar I could get. When I found out about anything, I would go to those seminars.

But I also have a good relationship with my doctor. What I would do is that, I would gather my information and I would discuss it with my doctor, and he would explain more about that particular treatment or he would explain to me what was going on with that particular trial. I'm very fortunate to have a doctor that is also a medical researcher. I'm sure oncologists just hopefully do anyway, but definitely keeps up on the latest greatest information, and we would discuss it back and forth. I'm very fortunate also that we have an e-mail relationship, so that I can pass information on to him and he will explain things.

Dr. Harpham:
And the one thing your oncologist can do that none of these other resources can do is relate the information to Greg, to your personal situation.

Greg:
Exactly. May I state one other thing?

Dr. Harpham:
Absolutely.

Greg:
That is that I think that it's important for all of us to make our own decisions when we are discussing treatment. It's very important because we are the ones that have to live with that treatment and the result of that treatment. And so, although I love my doctor, I choose not to just jump on anything that he or anyone else would say. So for me it's very calming and reassuring and helpful to research the information and discuss it with my oncologist, but ultimately to make the decision for myself.

Dr. Harpham:
So, research is essential for you, Greg, because you ultimately are the one making the decision?

Greg:
Correct.

Dr. Harpham:
Do you think obtaining information helps you any other way besides just helping you make your decision?

Greg:
For me, fear--I guess for most people--comes from lack of information. I think that if you can get information on your particular cancer and the treatments and the success of those treatments, that it can alleviate some of that lack of information and fear. For me, it's done that. And it's also allowed me to be able to discuss with other melanoma patients, options that are available which has made me feel that I have helped someone else. So it's been good, in that it explains options for me, it allows me if I am ever forced to make a decision, I don't feel like I am rushed to make an improper decision. It's also allowed me to feel good about myself by helping others.

Dr. Harpham:
Vickie, Jeanne, anything to add on this?

Jeanne:
Yes. This is Jeanne, and I was given choices when this was discovered. I went for a second opinion, and both doctors pretty much gave me choices. They said that I could try the hormonal treatment since that was a factor. The oncologist that I am with would have liked to have seen me go immediately to Taxotere® and herceptin because my system was not compromised at the time and he thought that might be the best time to get the best response.

I chose to go with the hormonal because it was made clear to me that I should consider my quality of life. Of course, I've never been on chemo, but I did not see being on chemo as great quality of life. As it turns out, it has worked extremely well for me, and my doctor is very happy with the plan. I think there is a good feeling about knowing that you have looked into it and you've decided. Then you accept that that's the one, whatever the outcome is, rather than someone else saying, "Do this," and not having a voice in it yourself. It gives you a little bit of power in the situation, I guess.

Dr. Harpham:
And not only does it give you power, you don't have this wondering, "Is there something better out there?" and "Is this really the best treatment for me?" If you know that you have limited options and you have made the best choice you can, then it's out of your hands. As you say, a little easier to accept if things don't go well.

Greg:
This is Greg. It doesn't work if it doesn't go well to point a finger at someone else for making the wrong decision. You're the one that has got the problem, and so it doesn't help to be able to say, "Well, I didn't make the decision, it was my doctor." So it's very important, I think, to be able to assess the information and feel comfortable. I think you have to feel that this is the best option that I can choose for myself.

Dr. Harpham:
Greg, for many people cancer and medicine is a whole new world. I mean, they are not doctors and nurses. This is new to them. How do you gain enough expertise to feel comfortable making those decisions?

Greg:
I agree with you totally, and I would also suggest to you that I don't have the expertise that my doctor would have. But since it has happened to myself or to someone else, I think that you have to go out and you have to gain as much information as you can, just as I, maybe would develop a new hobby. I would throw myself into that hobby and learn everything I can.

With my particular cancer I have done the same thing. I have thrown myself into it and read everything I can possibly read and gotten into online chat groups, anonymous support groups, and gone to seminars. I think that that's the thing to do is just to--If you're strong enough to be able to do that, I think it's important to throw yourself into it and learn as much as you can.

Dr. Harpham:
And as a physician and physician survivor, I've been writing books and articles for patients because I absolutely believe that most people can learn enough to make excellent decisions in their own care. So, I completely support everything you're doing.

Greg:
I'm glad you say that. I think the difficult thing is sorting out where to go to get the information and how to understand it.

Dr. Harpham:
And there are resources to help patients know what is good information and what is poor information. The National Coalition for Cancer Survivorship, which is based in Washington D.C., they have guidebooks and guidelines to help patients sort through the medical information, and it can be obtained online or through the mail. I think their website is www.cansearch.org, and it is a wonderful resource to teach people how to navigate the system. And I think your analogy of a hobby is excellent, because people can become involved in a whole new world, be it flying balloons or dealing with cancer. If you bring your resources to it, you can learn enough to be your own best advocate in your medical care.

Greg:
For me, and I think for most people, I was very frightened when I was told that I had cancer, and I wanted to learn as much as I could about it. I wanted to find other survivors with my particular cancer. But, it was difficult when I felt like I had to make a choice on treatment, because for melanoma nothing has shown success. No chemo, no radiation, immune therapy; nothing has shown success. So for myself, it was difficult to sort through all the different clinical trials where the results are really not posted.

Dr. Harpham:
Where they're not available yet.

Greg:
Yes. To be able to say, "Okay, I feel comfortable about this one." And it is very scary and overwhelming when you're trying to make a choice, and maybe you've said, "Okay, this is the one that I want to go with." And then all of a sudden there is something new, or someone tells you something, or you read about something that maybe once, you maybe want to change your mind. It's very upsetting because it's just--I don't know, it's just too much information, and you're just nervous and you need to make a decision, and it's very scary.

Dr. Harpham:
Not only are you anxious, not only are the stakes high, but it's a different type of decision than, for instance, choosing a car, because you have to base a decision often times on incomplete information. As you say, there may be a study where the longest time somebody is out from the treatment is a couple of months or a year. They don't have long-term data. So, it's hard to weigh apples against apples. These are very difficult decisions to make, but as you said, with guidance, I think you can make the best decision possible with the information available.

Jeanne:
This is Jeanne. One of the things that has happened to me because I am on Arimidex, which is an anti-hormonal thing, I do not have any of the--I don't look like I have cancer and I have my hair. And most of my friends think that if you have cancer, you have to have chemo. And of course if you have chemo, you lose your hair. And I joke that everyone would be happier if I didn't have hair. I should just shave my head.

Dr. Harpham and Greg:
[laughter]

Jeanne:
--and then they wouldn't question my treatment. [laughs] But people have set ideas and they want to see you, in my case, they want to see me fight with the biggest, nastiest weapons that medicine has to offer, no matter what I tell them about my situation. So it's kind of difficult sometimes to make your decision and then turn off all this other "Well, you've got to fight. You've got to do this." Because my hair is still on they don't think I'm fighting. That sounds funny, doesn't it? [laughs]

Dr. Harpham:
No! It's actually a very powerful observation, because the best treatment for you may not be the biggest guns.

Jeanne:
Right.

Dr. Harpham:
Bigger is not always better. And it means educating the people around you, but as you said--you used the words, "They're set." They just have this link in their mind, and it's a matter of educating other people, which is often a task that survivors face.

Jeanne:
Yes.

The Process of Preparing for Your Own Possible Death

Dr. Harpham:
Well, one thing about all three of our guests today is that they're all doing well today. They have a type of cancer that is difficult to cure or difficult to treat, and the statistics are that many people die of these types of cancer. So, at one point or another during the course of your survivorship, you have had to deal with the realization that this cancer may take your life. And I'd like to hear about what steps you've taken, if any, to prepare for the possibility that this cancer is not controlled and becomes life-threatening. Jeanne?

Jeanne:
Well, I have accepted the fact that I can't be cured. I've been told that from the beginning. That it's treatable, but it is not curable. So I have accepted the fact that barring something unforeseen, this cancer will take my life. But that has actually become just a fact for me, and I guess, it's hard to say that you've accepted it, but you do at some point.

Early on it's very difficult. I was diagnosed in August, and that first Christmas, of course, I thought was going to be my last. It was a very traumatic time. Everything, at that point I didn't know if I'd be there the next whatever. Finally, you just know that that is the case and you start living more in the day, is what has worked for me.

Planning ahead is not something that works well for me; thinking about next summer. But today I'm fine and I can deal with today. I have written my obituary. I have made notes. I have done quite a few things in preparation. I think that almost gives you a relief to have that over with; to get that out of the way.

Dr. Harpham:
Was that hard to do?

Jeanne:
Probably at times. Probably the hardest part was writing notes to my children and grandchildren. I did what I call "I Want You to Remember", and I wrote things that I remembered about them and about our times together that I want them to remember. I am trying to make memories to leave behind. At the present time I am trying to decide little things, not big item things, but little things that may mean something to different friends and people, to have of mine.

Dr. Harpham:
How does that make you feel after you do it?

Jeanne:
It makes me feel better after I do it. I've done something. I think I'm doing something about it. I can't change it, but I can do something about it. I can have some control over what people remember of me, of what my memorial service will be, of what will be done with my ashes, and then after that it's all up to everybody else. [laughs]

Dr. Harpham:
Jeanne, how did your family and friends react when you took these steps?

Jeanne:
My husband pulls away from talking about things like that. My daughter was better about it at first, but now kind of I can see an uneasiness. I don't talk directly to the grandchildren much. We've had tiny talks at the beginning, so they had some understanding. Mostly I have just done these things and told my husband where they will be and to be taken care of. But I have discussed, as far as my final arrangements and it's not going to make any difference to me really. So I've talked to everyone else about what they would be comfortable with and what would be comforting to them, because I'm not going to be there. Well, maybe I'll be looking in, kind of kibitzing [laughs].

Dr. Harpham:
[laughs]

Jeanne:
[laughing] Knowing me, I'll be kibitzing there in some way, but I want it to be what will bring them comfort.

Dr. Harpham:
Vickie, what about you? How has thinking about the end played into your survivorship?

Vickie:
Well, first thing I think I did, it was a couple of months after I was diagnosed before I was able to do it, was I made out a Living Will. Because I wanted to be in control of what was going to happen when that time did come. So once I did that, I felt better about the decisions, and who was going to be making the decisions, and what decisions would be made when that time came. And a lot of other things that Jeanne said, that I've also done, as far as writing things down, how I want things to be disposed of and different little things like that.

Dr. Harpham:
Was that hard to do, Vickie?

Vickie:
Very hard! Oh, it made me very sad, but just for a short period of time. And as far as how my family felt about it, they were kind of alarmed because they said, "Well, you don't think that you're going to die now?" And I said, "No, but I want to get these things out of the way, because I can't be happy, I can't go on with my life until I can make some of these decisions. Once this is taken care of, I can be happy in my life."

Dr. Harpham:
And what, in fact, did happen after you took these steps?

Vickie:
Well, it just made me feel better about my total situation, period. And I think once I did it, and my family kind of absorbed what was going on and what was happening, they've accepted it also, now.

Dr. Harpham:
What about you, Greg?

Greg:
I can understand exactly what she said, because I think that when I was told I had metastatic cancer, I felt the same thing. "Oh my gosh, I'm going to die, and I need to do something about that." And so, I set out to look for a plot, to even pick songs that would be played. I wrote. It took me quite a long time; I think it was weeks, to write a letter to my nephews. I don't have any children, but my brother has two little boys. I got a will, made out a will and advance directive. I think for me, it made me feel better, because now, as it was just said, I can put those things to rest. I don't have to worry about those things. My family did not react positively to that.

Dr. Harpham:
Tell us more.

Greg:
Well, I have a brother, an aunt and uncle, and my girlfriend. My aunt really was not aware that I was doing any of those things. My brother was finding out that I was doing some of those things. He is a very intelligent person and likes to solve things, and if he can't solve things, I think it probably drives him crazy. And so he is not able to solve my cancer, and so I think it's very difficult for him.

The fact that I was making plans for burial, he felt that I was dwelling on the negative and I felt that it's something that I needed to do. The way I expressed it to him was that even if you don't have cancer, you could get hit by a car tomorrow, and you might want to have these things planned out. And so he kind of accepted that, but I don't think that he liked the fact that I was making burial plans.

Dr. Harpham:
What about now?

Greg:
Now?

Dr. Harpham:
Now that these things are done and...

Greg:
It's not discussed. I think that the way that I feel about it is that I really hope and think I'm going to beat this. I don't want to be unrealistic. I didn't think that for quite a while, but I feel good now, and so I kind of want to remain in that frame of mind. So we really don't talk too much about those types of things. I think that I'm pretty much--I do feel well. I think I'm going to be fine, but I'm prepared just in case. And it makes me feel like I don't have to worry about that, and it also allows me and my family not to have to discuss those things which I think are painful, more for them.

Dr. Harpham:
And that's a key point, that taking these steps does not mean you have given up, does not mean that you are pessimistic or you think you're not going to get well. You can have complete faith in a complete recovery and still take these steps because of the possibility and as you say, not even of dying of your melanoma, but getting hit by a truck on the road.

Greg:
And I would also like to say that I think that when people hear the word "cancer", or if they're told they have cancer, they immediately think of death. And that is, I believe, what the big scare of cancer is, "Oh, my God, I'm going to die!" And I tried to try to make myself more comfortable with that concept of death. Of course, I wasn't really public about that, that I was trying to become okay with the concept of death, but I think that that helps to resolve some of the fear.

Learning How to Seize the Day!

Dr. Harpham:
Many people, philosophers, cancer survivors, state that in learning how to die they learn how to live. They live more fully. And there is a book called "Living with the End in Mind" by Erin Cramp. It's basically a checklist for living life to the fullest by embracing your mortality. She goes through a checklist of things people should do when they're perfectly healthy, let alone when they have a terminal disease, to prepare. And then by doing that, it frees them to really, really embrace fully, each day. And I'd actually like to talk about this concept of "Carpe Diem", "Seize the Day". It's a cliche that everybody uses, but I think it means something different to the cancer survivor, and certainly someone who is dealing with a type of cancer that has a poor prognosis. Jeanne, you talk about seizing the day.

Jeanne:
That's something that I work very, very hard at, because if a day goes by that I kind of haven't enjoyed every little piece of it that I could, I feel badly about that. That wouldn't have been something that I ever thought of before. There just were good days and bad days.

Dr. Harpham:
Is that a burden? I mean, if you have a fender-bender in the morning, and if your refrigerator goes out in the afternoon, and if your plumbing breaks in the late afternoon, it's kind of hard to enjoy that day.

Jeanne:
Actually, I find that those things anymore--I kind of put everything on a scale of how it compares to having what is basically, terminal cancer. And you'd be surprised how unimportant those things [laughing] actually are. And in my little concept of small miracles, the mundane things have kind of gotten lost in my life.

The birds at the feeder, I live out where I get to see the deer, pretty clouds in the sky. My making the most of each day has more to do with finding the little things and in finding times with the people I love. You find yourself--I found myself I should say--drawing this circle of things that were really important to me, where I maybe thought there were this whole mass of things that were important to me before.

Dr. Harpham:
Is this a big change for you? Where you don't sweat the little stuff and you really focus on your relationships and the birds at the feeder?

Jeanne:
Some of it was there before. It's more intense now, but I definitely used to let, okay, the refrigerator quit, or the faucet's dripping, I used to let those things bother me before now. Now I look--when someone else gets upset about those things, I think, "Don't they realize how trivial that is?" You know, I guess I compare everything to my time limitation. However, I don't know what that is, but I just know that it is.

Greg:
This is Greg. I would also like to throw in, I agree totally! I was never one to really dwell on the small problems but I, too, compare things to cancer now, and think, "Is this really as bad as this?" And you do put it on a relative scale, and I think the same way, "How can someone be upset over such a minor thing?" And I've found myself doing that, too.

Vickie:
This is Vickie. I just wanted to add, I agree with both other guests. I just try to focus in on the things that make me happy and try to do things that I enjoy doing. There are a lot of just small things that make me happy, maybe that never made me happy before. I'm trying to enjoy my life the best I can.

Dr. Harpham:
Before we close, Jeanne any last thoughts or wrap-up for you?

Jeanne:
I guess I would have to say I wouldn't be being my whole self if I didn't say that my faith has a lot to do with strengthening me at my worst times.

Dr. Harpham:
Tell us about that.

Jeanne:
I have a strong faith that God is with me. He has always taken good care of me. And that no matter where this journey takes me, and I think the other two will agree with me, that some of the process of getting to the end is a little scary, but I do believe that whatever it is or wherever this takes me, I won't be alone and I can make it. I can do it.

Dr. Harpham:
So, it gives you confidence and comfort?

Jeanne:
Right.

Dr. Harpham:
Vickie?

Vickie:
I also find a confidence and comfort, but I believe there is a life after death, and my religious beliefs are very strong. They've helped keep me on a steady pace with my diagnosis, and it's been very important to me in helping me deal with the cancer.

Dr. Harpham:
Greg?

Greg:
I have to agree. I have found that my faith has strengthened tremendously, and it makes me feel more comfortable with my situation. And laughter is really important for me, I think that makes every day better and every moment better. I try to find myself thinking throughout the day, "Is this the best I can feel at this moment?" And just when you say that, you kind of change your mental attitude of whatever was going on in that moment. And I think that having friends around is also important.

Dr. Harpham:
If you could look back, Greg, to when you were first diagnosed, is there anything you wish you knew or wish you'd been told about dealing with a cancer with a bad prognosis that would have helped you? Something that you know now that you wish you had known then?

Greg:
Oh, gosh, I don't think so. I think the thing that was difficult for me was that people would say, "Try to enjoy each day." And I found that very irritating to me in the beginning, because it was like, "Okay, fine. How do you do that? What am I supposed to do?" And so if someone could have kind of dissected that a little bit and given me some examples as to how I was supposed to enjoy each day, that would have been helpful. I have since, kind of learned in my own situation what makes me happier. And I think it would have been a lot easier of a road if someone could have outlined it a little bit better.

A Hopeful Acceptance

Dr. Harpham:
Vickie, what about you? Is there anything you wish you knew in the beginning that you know now about dealing with a type of cancer with a poor prognosis?

Vickie:
That it's not an automatic death sentence. I wish now I had known a little bit more the first time; educating myself a little bit more about the cancer. I think other things that I found out this time, would have helped me a lot more at the beginning of this diagnosis.

Dr. Harpham:
What about you, Jeanne? Anything you wish you knew then, that you know now?

Jeanne:
Well, it would have taken a crystal ball. But the wonderful thing; that would have been wonderful for me to know over two years ago, was that two years later I'd be feeling better, not worse, and still be alive. But of course, that wasn't something anyone--

Dr. Harpham:
--that you could have known. But the one thing you could have known was that it was a real possibility.

Jeanne:
I knew it was a possibility. I was afraid to even hope I would be one of those people. You see the odds and you think why would I think that I'm going to be in this really wonderful, better part of it?

Dr. Harpham:
Mm-hmm.

Jeanne:
That would have been a wonderful assurance, but, as I say, that would have taken a crystal ball. But that would have been nice. I think that it would have made life a lot easier. Now I have less of a feeling of, maybe I won't be here at Christmas or next Memorial Day, than I did two years ago.

Dr. Harpham:
And of course, there are no crystal balls.

Jeanne:
It would be nice, that and the magic wand.

Dr. Harpham:
[laughs]

Vickie:
This is Vickie. Could I just add one more thing?

Dr. Harpham:
Absolutely.

Vickie:
I just want to say that I am more optimistic now and very happy with my quality of life. I mean, yes, I do have bad days, but things just seem to be a lot better.

Jeanne:
This is Jeanne. I agree. That's very much the case for me. But a lot of that has to do with being out of pain and not being on the dreaded pain medications that kind of made me a zombie and that kind of thing.

Dr. Harpham:
Well, what we're hearing is that quality of life and sense of optimism is not directly related to how much cancer you have, but how you're dealing with your cancer.

Jeanne:
This is Jeanne. That's definitely true. My entire skeletal system, except below my elbows and below my knees, is full of cancer, plus soft tissue organs and my eyes, so--

Dr. Harpham:
And yet, you have realistic hope and you are enjoying your life.

Jeanne:
I have no reason not--I mean, I'm realistic, but there's always--I didn't think I'd be here now. So who knows what surprises are in store, what better thing will come along or what will happen?

Dr. Harpham:
And what that's called is hopeful acceptance or acceptance with hope. You accept the statistics and the likely outcome, but you have great hope for doing well.

Jeanne:
I like that.

Greg:
May I add something?

Dr. Harpham:
Go, Greg.

Greg:
This is Greg, and I'd just like to say that I too, am very happy today. As you mentioned in my introduction, I developed seizures and a spinal disease that I am about to have another surgery for, and I'm very happy. I think the thing that also allows me to be happy is I do some comparisons in my mind and I think, "Okay, fine, you've got this going on, Greg, but look at these other people. Look at that person who's sleeping underneath the bridge at night." Here I am and I am sitting in a very nice, warm, comfortable place. So I am very happy and I think that it's very, very important to try to get to the happy place.

Dr. Harpham:
Looking at what you have, not what you've lost.

Greg:
Correct.

Dr. Harpham:
Well, I hope our discussion has helped you sort through some of the issues that may be part of your life. A big thanks to our guests, Greg, Vickie and Jeanne, for their willingness to share their 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 other discussions we have available on the website or by telephone.

For the American Cancer Society's Cancer Survivors Network, I'm Dr. Wendy Harpham, wishing each of you a great day, today and every day.

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