Peppy Chernoff, Living with Metastatic Breast Cancer 2

Dr. von Gunten: Peppy, tell me what you understand about your health now.
Hmm, interesting question. I understand that I am at a pivotal point, I guess, I am at some juncture. And it is necessary for me to join hospice. And so I am starting a new journey. And it’s scary, it’s… hmm… it’s just downright scary for everybody, because all of a sudden there are whole new things that you think about putting in place that you haven’t done before. You think about the urgency of a lot of things. Like I wanted to take a trip, and I didn’t think I was going to be able to, but I did it. I myself and my daughters, Hollind and Danielle, went to New York— I didn’t know if we were going to make it, I didn’t know how I will do in the car. I called it my Victory 2017 Tour because I am victorious, and so we decided that this is how we would start this new chapter in my cancer.

I think everybody needs to do a trip like this. It was so uplifting, I don’t even know how to explain it. But we made the trip, everybody looked the same, and I hadn’t seen a lot of people in a long time.

Dr. von Gunten: How long?
I would say most of the people, say, seven years. And so it was wonderful, and we spent time, with at lot at one-on-one, and it was loving, it was at high that you can’t even imagine. It was just… I guess I don’t know what my expectations were, but I know for me, expectations went pretty high. And so mine were very high but I couldn’t have even dreamed of the expectations that were reached. It was just amazing, and we did this a month ago. And I’m still living all of that excitement. It was just… anybody who is at this juncture, really, think about doing this, because it’s just so life nourishing.

Dr. von Gunten: Do you associate the decision to enroll in the hospice program with the sense of urgency to connect with family and friends?
Yes, I would certainly rather do everything now than wait for people to come to a funeral. I want people to see me looking well, feeling good, doing normal things. I think I want everybody to know that, that you can really do a lot more than you think you can. And I know, for myself that’s true. And I’m hoping everybody try it, even a small step in doing something.

Dr. von Gunten: I’m hearing you say that the sense of urgency, knowing that life is shorter and then this need to connect were really powerful for you, those two things together are what enabled or led to this trip that was so meaningful.
Absolutely. I think my motto always was: Live, love, laugh. And I think this even made that more intense.

Dr. von Gunten: When you and I first met, you told me, “Don’t use the ho:spice” word, don’t use the “palliative” word.” Now you’re enrolled in a hospice program. What’s changed for you about that word?
I guess I’ve learned a lot over three and a half years. I learned a lot more about palliative care. I learned a lot more about hospice. I learned a lot more about terminal illness. And all terms that… I still don’t like them, but I’m accepting them, and I see that you can live a very good life being in a hospice program, and it also gives you time in advance, honestly, to get a lot of things in… when I say order, I mean you can have your family members, talk to bereavement people in advance. You can learn about a lot of things in advance. And I think that’s important; it’s important for myself. Because…

I know everybody hates to talk about this, you fear death, and it’s very scary. It’s scary, but it’s not only scary for your family members, It’s scary for the patient, and I would really love to find a way to connect with other hospice patients and talk to them about the fear of the unknown and the fear of the uncertainty because I think this is the scariest part of this for me, this is the scariest part of this journey.

Dr. von Gunten: You and I both laughed before about your need to control things.
Absolutely.

Dr. von Gunten: And this is something that, no matter how hard you try, you cannot entirely control what’s to come.
Exactly.

Dr. von Gunten: Is that the scariest part?
I think so. It’s scary because you don’t know… you can’t call somebody up and say, “Hello, I’d like to know about this next step, what it’s like,” because nobody has been there and nobody can tell you about it. But I think just speaking out loud about it gives you kind of a peace.

Dr. von Gunten: You laughed the other day because your husband died a couple of years ago now of cancer. And you sort of joked about telephoning him and finding out.
I would love to, but I’m not getting signals from him. A lot of the people told me that when people pass away, they get a signal, they see something. I have not gotten any signal, so Norman, if you hear me, I would like a signal about this, so I have some preparation. I need a preparation for that.

Dr. von Gunten: Yeah, that preparation stuff. Given how afraid you were of the “hospice” word and then the events of the last month, how would you compare and contrast, what you’re afraid of versus what you’ve actually experienced?
Well, I tried to put the afraid stuff to the background, I’m trying to not think about that until… you know, put a scary head out, and I guess I’m coming to a place of acceptance. I have no other choice. So rather than stop living I’m focusing on that, I try a focus on things that I can do to make my life better, my family life better, and the lives of other people. I find that I have this need to connect with people that are in my same situation to help them because I find that it’s helping me.

Dr. von Gunten: By helping others, you help yourself.
Absolutely.

Dr. von Gunten: As you said, the support group you’ve been in the Cancer Center has been helpful to you. Say more about that.
I have been doing a wonderful cancer stress group, at the Bing, and it has been wonderful. We have a facilitator that we talk with, and you have to be in cancer treatment or have been a cancer patient. And it’s really interesting the hunger for knowledge. Everybody wants to know about what everybody is going through because I think it makes it easier for them and people—if you talk to people who have been through it, it’s so much easier for you to handle something. So it’s wonderful. I think everybody should try to get into some kind of support group with other people in the same situation. Because it’s easier to talk to people who are going through it. I mean your family is wonderful with support and stuff, but I think it’s easier to talk to people who really understand what you’re going through.

Dr. von Gunten: Say more about your daughters and their reaction to this.
It was not a pretty sight. The day that you came over and said to me, “I think we need to talk about hospice.” It was major hysteria, because nobody wants to hear that. So it was very, very, very difficult. And you came to my house how many times in a week to talk to both of them, and it was a very, very tough time because all of a sudden, that fear is now right in their face, I mean it’s staring at them, and we’re putting it sort of on a back-burner some place. It’s now… this is really real. And so, I think they handled it a way most families handle it, but…

Dr. von Gunten: Tell me about that. How did they handle it?
Hysteria, tears, just not believing that the end could be so close, and yet you look at me, and I certainly don’t look like somebody that’s on the last leg, but I don’t consider myself on the last leg. I feel for almost the first time that I’m actually living and trying to do things because I’ve got a lot of unfinished business, and so I have to stay around. And who knows, these doctors do make mistakes.

Dr. von Gunten: They do.
So, it’s very possible that I’ll be around a lot longer.

Dr. von Gunten: That’s right, it is possible, but you’ve just articulated a paradox that you’re enrolled in a hospice program, which acknowledges that death is close, and you said, “And yet I’m living more than I was before.” Say more about that.
Before I was, first of all, I was very, very tired, and I was sleeping a lot. And then, through the magic of chemistry—I am taking steroids, and they are keeping me awake, maybe too awake a lot of times, but I’m able to do more things than when I was sleeping a lot, and I wasn’t feeling that great. So I am exchanging one thing for another. I am exchanging sleep to be able to do things that I want to.

Yes, it’s very difficult to do a lot of the stuff that I want to do. But I’m really trying to push myself to do it because I feel that I have some unfinished business with cancer and with the things that I would like to do, like finding a hospice support group for people who are facing death so that we can all talk to each other and just talk about how we feel. And where it’s hard to do with your family members, it’s so much easier to do with other people who are living it and who can look at you, and cry with you, and laugh with you, and love, and live with you, so I have to finish this process.

Dr. von Gunten: Yeah, someone remarked that when time is short, it becomes more precious. I wonder if your experience doesn’t illustrate that.
Oh, it does, absolutely. Because you want to do all the things that you haven’t done, and I guess it’s not that you’re doing the sense of urgency but you’re just sort of doing it because you want to. I mean, I’m not running a race, but I would do things that I want to do. I don’t know if I’ll ever write a book. I always wanted to write a book, and maybe one of these days I will do it. But that’s part of my plan, so…

Dr. von Gunten: Turning back to your daughters, what help… when you think about them, what do they most need now? What do you most want for them now?
I want them to live their lives, I want them to go on with what they’re doing, I want them to get the help for bereavement in advance because I think it’s important to put alive those… you know, in a row. I think the more you talk about it… it’s not going to make it any easier when the time comes, it’s not going to make it any easier, but I think getting the tools in advance and getting familiar with the people that they will be dealing with in bereavement.

And I also think it’s different, losing a first parent and then a second parent. When you lose, it’s a horrible loss. My husband was a tremendous loss in their lives and in my life, but losing that second parent, it even makes it more scary, having gone through that myself with my mother and father. It’s harder when you lose the second parent. And so I just would like them to have as much all their Indians in a row as they can in advance. But I know it’s going to be a very tough time, but I want them to at least have the tools that they need to go on.

Dr. von Gunten: I hear you’re wishing for them the best lives possible, even when you are not around.
Absolutely.

Dr. von Gunten: And the more you can prepare for that now, the better you like it.
Yes. I’d like to have some control in the afterlife, as it’s coming forward.

Dr. von Gunten: Yeah, and I think it’s… I appreciate you making that sort of visible and out loud because I think it’s more people than just you feel that way.
But I think people don’t know how to approach it, I think the important thing is approach. I wish more people would be out there and say, “Let’s organize something, let’s do something, because I think there is… everybody, I’m sure, thinks about all of this, but nobody knows how to go ahead with it. I think… I feel it’s up to me. If nobody else is going to do it, then I’m going to have to take the ball and go with it.

Dr. von Gunten: That’s why I’m grateful to you for being willing to be interviewed like this, because it does make it visible out loud in a way that many people might not have an opportunity, and I’m also struck by the… again, the paradox. It’s scary, so let’s not talk about it because that makes it scary. And yet, you’re saying you want to talk about it.

Exactly. It’s like a double-edged sword, I don’t know what to do, but I think preparation is important, and I think we need to talk about it because these problems are going to be around after I’m gone, so why not get the ball rolling before that?

Dr. von Gunten: Now, one of the big barriers to this of course is who talks about it first. So, you’re remembering back to when you and I decided, I needed to mention to you, that in my judgement enrolling in the hospice was the right thing to do. Now that you’ve been through that, including the effect on you and your daughters, what advice do you have to other doctors? Who through every one of their minds go, “I know I need to bring this up, but it will make my patient and her daughters—you said “hysterical”. Uh, I think I’ll put that off for a little while.” What advice do you have?
I think when the time comes, you have to just do it. You have to say it. When you were approaching me for that, I will tell you, I thought you had something wonderful in store for me, I thought we’re going to go on a speaking tour through the United States for the American Cancer Society, and I was going to be doing a doctor-patient approach. When you said it was for hospice, I was deflated, I figured, “Okay, so there goes one dream, I’m not going on this wonderful…” This is even the worst… I didn’t even think…It never even crossed my mind that I was ready for this next step in this journey. I still can’t believe it, and yet nothing really changed in my life, except it fine-tuned a lot of things, it’s putting things in a better place and a better perspective.

Dr. von Gunten: I remember saying to you, “Peppy, I think the cancer is worse.” And your reply was, “I knew it, I knew it. The scans didn’t show it, but I knew it.” Do you remember that?
Yeah, I do.

Dr. von Gunten: Without putting words in your mouth because my experience of most people with most diseases, when the doctor brings up enough courage to bring it up, on some level it’s not news that the person can recognize or see the things and there’s like, “Oh, right, you’re confirming my worst nightmare,” but it’s not like it never occurred to you at all.
Well, you know it’s going to happen, none of us is getting out of here alive, so no matter what, we’re all going to reach this point, some of us sooner or later, but I think it’s important to know it and this way, you can just go on that trip or do things that you want to do with a little more urgency instead of just keep going and do the other things that you want to do, if there’s something that you like.

Dr. von Gunten: So, what you’re describing is by… even though was emotional and difficult, and because of it some good things came out of it—this trip that you found.
Absolutely.

Dr. von Gunten: Spiritually fulfilling in a way that’s hard to articulate it.
It’s so hard, because it was on one level, it was the three of us going and being in a car for an extended period of time and laughing, and yelling and, you know, doing all the things you do on this kind of a trip, but we went into it with a whole different approach. And for me it was just a joyous experience and then just getting a chance to be with people one-on-one for a couple of hours a person… it was just so life fulfilling. I just… I can’t say enough about it, it was just…

Dr. von Gunten: Well, my reason for asking about this is… because you just glow when you talk about it—at least from where I sit—you’ve been thinking about going to New York for a while. And I remember one of your daughters saying to me, “Alright, well, she should go, should we do it in a month or two?” And I said, “No, I really think you should do it in a week or two.” Soon rather than… don’t put it off because we can’t predict the future. If you feel up to it now, go now. And you did it, which I think is also an important message of… because human beings wait. We wait for things, and then I’ve seen so many patients where they waited too long.
Great, I wasn’t going to let that happen. I guess I saw a life when my husband passed away, and his happened so fast, so that you don’t know what the next day is going to bring. So I felt, like you said, do it, and do it now, and, boy, we rushed, we did it, and now it’s just a joyous memory, so…

Dr. von Gunten: Which you said it’s still going on in your mind.
Oh, I still have it going on in my head, you know… But I think, for my family and friends that I saw, I think they got a lot out of it also. My sister-in-law had a chance to spend time with my daughters and cooking with them, and teaching them all kinds of stuff, and they also, when they were sitting with her, would look at her and they said to me, “Didn’t you realize how aunt Sandy is so much like dad, that she looks like him?” And I never noticed it. I still don’t, but I guess they looked through their own eyes at her, and I looked at my husband when he was 30… and that’s it.

Dr. von Gunten: Yeah, well, and I would summarize it, you all look through the eyes of love. This is love right in front of you, you can feel it, taste it…
Oh, actually, in this family, love is at its real core and it’s just— And that’s what I think people sometimes forget… it’s just such a loving, warm… Please, everybody, do it, do it, do it. That’s all I could say.

Dr. von Gunten: Yeah. Before we close, think more about advice you would give to doctors broadly. We’re taking care of people with terminal illnesses, because they need to bring it up—patients generally don’t bring it up. The doctors need to bring it up. You said it’s hard, but you need to do it. What else, what other advice?
Patients can tell if a doctor is sincere, and I think they have to think a moment and think about the sincerity. Even if you practice in front of a mirror, but you practice it on a patient, a person that doesn’t have cancer or a person who does, who’s not in a terminal part of their time, but I think sincerity is very important. I think… People want to know what the truth is. I mean, you can rose-colored it however you want to but I think it’s very important for physicians to just be sincere, that’s the only thing I can think of for them, and maybe, if I want to talk to a family member beforehand, and just toss it around with them how to approach it, but I think the way that you approached it was sincere, it was not going to be easy no matter what, and yes, somewhere deep down, I knew, it was going to come to that.

I didn’t expect it that day, I had this wonderful thing going on for myself, which probably you blew but I got over it, but I think doctors should just be themselves and take that time, because I think it’s very important, and your patients will really appreciate it.

Dr. von Gunten: Well, there is sadness in the doctor, I mean, for me telling you or for any doctor telling the patient that they’re coming to that point in their illness, there is sadness, so you’re saying they should be honest and sincere, including about their sadness?
Absolutely. I think people want to know that doctors are human beings and they have feelings too, and for a physician, it’s important for them to show a patient that they do have feelings. I think it makes it more tolerable to the person that you’re telling it to.

Dr. von Gunten: What you’re advocating flies absolutely in the face of the way doctors are trained in this country, which is, “Do not show emotion, stay neutral, neutral, even-keeled, not too happy, not too sad, just stay clinical.” And you’re saying, for something like this seeing a little more…
I think it’s important… everybody’s approach is different but even a regular doctor, I would rather go to somebody that has that human side of them. I mean, I hate when you go in there, and you’re given ten minutes and you feel like an automaton has come in, taking the information, and walked out. This program is wonderful because you have time to spend with somebody and get to know them, and you know how interested they really are in you as a patient. And that gives you a…

It’s very important, that’s all I can say. It’s just… I think it is a necessity. I think everybody goes to everything so fast. Take the time. I think you’d become a better person for it.

Dr. von Gunten: I think that should be the last word.
Okay.

Dr. von Gunten: Anything else you want to say before we stop the tape rolling?
Just thank you, Charles, for all that you’ve done for me and, of course, thanks to my daughters, Hollind and Danielle, who have been really wonderful, wonderful, wonderful throughout this, and I know it was really difficult for them, but may you all have daughters like mine, that’s all I can say.

Dr. von Gunten: That sounds like a nice sort of traditional blessing.
Yes.

Dr. von Gunten: Alright. So I think we should move on to coffee, tea, and cake.
Perfect. Thank you.