Peppy Chernoff, Living with Metastatic Breast Cancer 1

Dr. von Gunten: This will be a little different than some of the other things that we’ve done. I want to introduce you to Mrs. Peppy Chernoff who has been a patient of mine for about a year and a half.
About two.

Dr. von Gunten: Going on two years, and what you need to know, Peppy, about these people. These are doctors and nurse practitioners who are learning how to be doctors like me. The reason to have this interview is to give them a bit of an insight into a kind of a patient that they don’t see very often where they are studying and working, and in some ways represents where this field is going, where the need is.

One of the other things that was true of doctor education is that when patients talk, they listen more than they listen to me or any book; they learn from patients. So, what I want to do is you and I to have a conversation that they’ll listen in on, and then towards the end, we’ll let them ask questions. Is that alright with you?
Perfect.

Dr. von Gunten: This is being done just for educational purposes. We’re not selling this. We’ll ask you to sign a form to give your permission. But I also want to get it on film that you’re not coerced to be here. You’re here for your own free will, and this is for education.
Absolutely and I’m happy to do it.

Dr von Gunten: Well, thank you. Do you remember when I first saw you?
I certainly do.

Dr. von Gunten: Tell me a bit about your cancer that lead to that time when I was seeing you.
I was originally diagnosed with Stage 4 Metastatic Breast Cancer. From the get-go, do not pass go, do not collect $200, just go to the top of the class. I thought it was a death sentence and I took very, very, very aggressive chemo that practically killed me, but I was getting over it.

Anyway, I get a call from Cindy saying that you would like to come and see me, and I’m thinking, “A doctor that makes house calls.” This is very interesting, but I was sort of skeptical because then I figured, “Oh God, I’m in worse condition than I thought.” I knew it was bad, but I didn’t know it was that bad.

And when I first met you, I remember the first thing I said to you, “Do not mention two words to me. Do not mention palliative care, and do not mention hospice,” because those words scared me. I figured, then I knew that I was in bad shape. I’ve learned a lot more. But that’s basically when you first came and I listened to everything you had to say. But I thought it was a wonderful thing.

So, I was a little skeptical but then I fell in love. (laughter) No, really. Everybody should have a Charles. You know that I keep saying, “He needs to be cloned.” You have to make a dolly. “Dolly the Goat Charles.” You are an amazing… I can’t even say enough and I don’t want you to get swelled head, so I won’t.

Dr. von Gunten: I remember the reason your doctor, and it was your primary care doctor that asked me to see you, was about your pain management. She was concerned that she wasn’t doing it right or there were issues, and so that was fundamentally why I was there. Do you remember, did I do what you asked? Did I not use the H word and the palliative care word?
You did not use either one. Nope, we didn’t talk about that. We just talked about a lot of things. My husband and daughters would sit sometimes with us, because everybody felt this was a disease for all of us and everybody had to have a real part of it.

Dr. von Gunten: For the benefit of the group here, tell me what you understand about your cancer now.
I understand that I am a miracle. They never thought that I would see 2015. I can never go into remission. But I have had—you name the treatment, I have had allergic reactions to a number of the drugs, but I have been on chemo almost constantly, and I’m on it now. I took a break, then I was on two months’ worth of radiation and then I went back to chemo. So that’s where I basically…

Dr. von Gunten: You said you’re a miracle. What do you mean by you’re a miracle?
Nobody thought that I could, you know, I was in such bad shape. They never thought that I would make it to December. That I would ever see 2015. Then 2015 came along, and my husband had not been feeling that great. We couldn’t get to the bottom of it, and then my husband was diagnosed with Stage 4 Lung Cancer. And so, here we were dealing with my husband and myself. Then the word “hospice” came into our lives.

Dr. von Gunten: You’ve talked about the cancer and that you know that it’s spread, and that the chemotherapy has been working to keep it under control, although it can’t cure it.
Exactly. But now I’m taking a new drug and that I’m also willing to try anything. I’m trying integrative medicine and I have to tell you, that is helping me tremendously. Well, I have my chemo. I’m getting massage therapy on my legs which are a mess. Lately, I have no feeling in my feet, I have pooling, I got all kinds of issues. But I try not to let any of this bother me. There’s so many other things that you can do.

Dr. von Gunten: I remember you telling that when you go to the Infusion Center, it’s something you’d look forward to.
I do. I have never met such unbelievably devoted people in one place. I’m not just talking about the nurses, I’m talking about everybody from the fellow who does the valet, Mohammed who does the valet parking; everybody is just so… amazing. They’re just, each person is just—They’re all a part of a greater thing. And I almost forgot the question. Could you repeat it?

Dr. von Gunten: You’re doing great. I’m remembering that period when your oncologist stopped the chemotherapy, and you weren’t going to the Infusion Center. What was that like for you?
I was worried, I had to be aggressive. I felt I needed to have the treatments because I was worried that if I didn’t take treatment, maybe things would start to grow. But I had to get over all the side-effects that I was having and that was a big issue: getting over the different problems that I had. I’ve had a couple of shots of an EpiPen so I have to be off of it but not only did I miss the people there, but I was just worried. I felt that I really needed to have the cancer drugs because otherwise, things would come back.

When I did discover something that came back, we took care of it and I did the radiation, and then when that was over, they found another tumor on my liver, which is one of the metastasis places. And so, then, dealing with a new drug now, “Kadcyla”… I’m not getting the best CAT scan in the world but anything that’s plus, even if it’s a little bit, is better than going backwards.

Dr. von Gunten: Say more about how this has affected you emotionally.
It’s a roller coaster, just like everybody else. I have good days, I have bad days. But I’m really trying to get myself involved in a lot of activities. I love to read, I joined Day Book discussion group at the library, and I’m trying to do stuff for myself. I’m trying to have my kids not all over me. Because in this process… I mentioned my husband was diagnosed with Stage 4, and he was here, but he also passed away six weeks after he was diagnosed.

Just to let people know that you can also have a life. My daughter got married at Kobacker. My older daughter who knew my husband was dying, Charles was nice enough to set up this particular room where we had a little reception with a very small, last minute wedding, but my husband promised that he would see her married, and he did. He also died an hour later. But he was here.

This whole ride for me is a roller coaster because you can’t even imagine… and then a couple of weeks ago, two months ago, my brother-in-law passed away from lung cancer and he never smoked. We’ve had everything. Anything that could go wrong has gone wrong, but the one good thing is, I’m still here and that’s been the most amazing.

Dr. von Gunten: I was thinking, so for a woman that didn’t want to ever hear the hospice word, didn’t want to hear the palliative care word, only wanted to hear about aggressive care, and then has a husband die of cancer, has a brother-in-law die of cancer, has to come to a hospice in-patient unit for her husband’s care, and then her daughter gets married in the chapel of a hospice in-patient unit, and you have the reception, and your husband dies an hour later, how do you cope with that?
It’s not easy. I was always commuting from here to the Bing and back. I was going for chemo, I was sleeping here, and then going back and forth. How do you cope? Fortunately, I had a very loving husband. We were married for 45 years. Everybody should have a husband. You knew him so you know. I have two very, very, very loving and caring daughters who smother me a little more than I would like to be smothered so I’m glad I got to go up by myself.

Dr. von Gunten: That’s right, you don’t have either of your daughters with you today.
I do not.

Dr. von Gunten: So, are you out? Is this like Girls’ Night Out or something?
I have my book group later today, so yeah. I wish it was Girls’ Night Out (laughing). I got all dressed up but nowhere to go. But I try to do other things because if you stop… I can’t feel sorry for myself because every time you talk to somebody, somebody’s got something worse. You don’t know what’s going through other people.

Dr. von Gunten: The picture you paint is living on a couple of levels simultaneously. You’re very hopeful about your cancer, you’re very hopeful about its treatment. You find some words about it very frightening, and on the other hand, you had to deal with more than most, the death of your husband, the death of your brother-in-law of cancer. Do you notice that in yourself that you’re living on several levels simultaneously?
I try not to think about it.

Dr. von Gunten: You try not to?
Yeah. Because if you start focusing on the negative, you forget there’s still time to go out and smell the roses. I mean, I think that’s what everybody has to remember. There are other things in life that you can look forward to, you know, just even going at a brunch or just doing stuff, and being with people that you like or love.

Dr. von Gunten: Is that new for you, focusing on the positive?
No. I always focus on the positive. It’s not new. Everybody who knows me will tell you that I was always a very up person.

Dr. von Gunten: That leads me to how this affected your family life, your family system, your illness.
I think it’s very, very tough for my daughters. Sometimes I don’t like to think about it. They know that I’m sick but they don’t like to put it in their face, and I think that’s very important because I don’t want anybody feeling sorry for me. I really don’t. I want people to treat me like they always treated me. I think that’s the most important thing: let me struggle a little bit. It won’t hurt. Even if I know that I can’t get around the way I would like to. Sure, I would love to get in a car and drive away, but I can’t. The thing that I love… one day I’m going to get in the car and go, if my feet ever let me. That’s the thing I miss the most, believe it or not. It’s just getting away by myself and not being dependent. But I’ve even learned how to… my New York mentality, so I just call a yellow cab and just get a ride and go.

Dr. von Gunten: Well, you bring up that you’re a New Yorker.
Yes, and happy.

Dr. von Gunten: And you’re also Jewish.
Yes.

Dr. von Gunten: And being a Jewish New Yorker ̶ that’s a certain kind of person. Say more about what that means to you being a New York Jew?
The need to have good bagels, and good Chinese food. It’s a little bit different here than it is there. I had a lot of get used to with that but I’m managing it. Do I miss New York and my friends? Absolutely. But they’re very supportive too. I still talk to the girls in my stock group, I talk to the girls in my investment group. That’s the same thing as a stock group, and my book group. I gain an honorary seat when we talk about a book, but I miss them terribly.

Dr. von Gunten: In some ways, you’re an immigrant to the Midwest.
Yes. But I’ve been coming here since 1993.

Dr. von Gunten: And my memory is that you moved here because your daughters had moved here.
Yes. Don’t send your kids away to college because they might move to that state. My older daughter, Hollind, came here to go to her school, graduated, came back to New York to work for Estée Lauder. You can’t afford to live in Manhattan unless it’s three girls living in a one-bedroom of walls. She came back here, and the cost of living and everything was so much easier. Her friends could not believe her apartment here and what they have in New York. And she’s been here ever since.

Dr. von Gunten: I’m remembering your life in New York. I think of you as a strong, powerful woman. I remember you being… you were president of ADASA?
You name the organization, I was probably president. I was very involved with the school board when my kids were in school. I was PTA president, and I was president of several Jewish organizations. I was a trustee of the synagogue we belonged to. I was very involved in community activities.

It’s hard when you move to a place and you’re older. It was a lot easier when my husband and I were together because we had each other when we went some place. We can go as a couple. Now, it’s a little bit more challenging going someplace by yourself because you don’t want people to feel sorry for you but you know that it’s not the same and it’s not the same people that I knew before so they don’t know my history with a lot of stuff. But anybody looking for a volunteer, I was always the one volunteering to run something or do something.

Dr. von Gunten: When I hear about someone who has been that involved, that in charge, that in control, and then they get a disease like cancer that they can’t control in quite the same way they’ve controlled everything else, it is particularly challenging. Is that true for you?
Sure, because I’m a control-freak. Anybody that knows me knows that I like to be in charge. So, it’s very difficult when you can’t run the show on your own, it’s your body and you’re at everybody else’s mercy, and then the mercy of all the different pharmaceuticals that you take. That’s the hardest part, not being the one who says, “Body, listen to me, I don’t want this,” and you try to be as positive as you can.

Dr. von Gunten: Well, I’m remembering the reason your primary care doctor wanted me to see you was because you were taking your medicines ̶ the way you wanted.
Oh, yeah. I’m not good with the stuff. (laughing)

Dr. von Gunten: Say more about that, you’re not good with the stuff.
I’m not very good. I always feel less is definitely more. And maybe I really don’t need it, and I didn’t know the difference. What is cancer pain as opposed to… I had my rotator cuff repaired a lot of years ago, and that pain, will the same drug help the rotator cuff? How does it know where to go? In other words, I did take morphine, and then I had some allergic reactions so I stopped, then I went on Methadone, I only knew Methadone for one thing. I didn’t know that it was the best pain medicine for breast cancer. So when I took the medicine I was taking, I never took it correctly. When I was in horrific pain, that’s when I took it and I never really took the right amount; I always took less. And then I have my own way of figuring it out, and I still do.

But I’ve also learned a lot more now. I learned that you got to take it before you’re really in horrid pain because then it really doesn’t help you at all. So I’m getting a lot better but I still have my own method. I mean, I know I can take two Methadone tablets three times a day. But I could take… if I feel okay, I just take one in the morning as a preventative, if I really, really feel bad, then I take Oxycodone. I have my own way but it’s working. I got it down to a science, I got to say that I just feel that I got it.

Dr. von Gunten: Right. What I remember is that your doctor was uncomfortable with you doing it the Chernoff way, and you enjoy controlling that and you do that with all your medicines.
I do that with everything in my life. I like to control everything if I can.

Dr. von Gunten: Yeah. And one of the features I think I brought to your care is that’s okay with me. The more you understand, then the more I’m willing to be flexible along with you. It is your life, it is…you’re experiencing the illness, not me.
Let me tell you that I really appreciate it. I still can’t figure out, and you know how I feel, how does the medicine know where it should go? In other words, how does it know what breast cancer pain is? And I actually can’t figure it out and I’m not exactly sure if I know what it is. I know when I hurt, and then it makes it feel better. But I don’t know if it also helps my rotator cuff? Will it help my sinus infection? Will it help a bad headache? Will it help my knees? I would like to be able to have more control in directing where it goes, but I can’t.

It’s frustrating because you know you have—oh, the worst, the lower back pain and you just— I like to call it “tushy back” because it’s like where your rear end meets your back and the pain…

Dr. von Gunten: These are good Midwesterners; they may not know the word “tush.”
“Tush” is rear end, derrière, butt.

Dr. von Gunten: It’s a good Yiddish word.
Yes, absolutely.

Dr. von Gunten: Now you said you’re Jewish. Most people who have cancer like yours, have a spiritual dimension to it, if sometimes through religion, sometimes not. What’s true for you?
Well, I believe in every God that will help me. We had a wonderful chaplain here in Kobacker who really helped my husband tremendously, and when we donated a paver outside, we had John do a little service for us. I prefer dealing with a rabbi but I will take everybody’s support from every religion. I feel that no matter where you are, if you’re in a church—when my husband passed away they had a memorial service at a church in Worthington, and it was such a lovely ecumenical service. I think you get a wonderful spiritual feeling in some of the places that you least expect to find it.

Dr. von Gunten: It sounds like that spiritual feeling is important to you?
Yes.

Dr. von Gunten: Good. What I want to do now is open this for questions from people in the room. What questions do you have for Peppy?
I’m so good. Nobody wants to ask me a question.

(man1) What’s going to happen when you have to go into hospice and you don’t want to hear that word?
I knew somebody would ask that.

Dr. von Gunten: And I’m just repeating it. What are you going to do when you do have to go into hospice?
I’ll cross that bridge when I get to it and see how I really feel. I saw a hospice do some wonderful things, and for my husband, it was amazing. He was all right with it. He was very graceful in the way he took to everything.

Me, I’m a control… I don’t know, I haven’t—and hopefully, I won’t get to that point, something will happen to me before that, and I’ll forego this step. I try not to think about that. I’m being very honest. I try to put that out of my mind, even the word palliative care, and I know palliative care is a whole different field of medicine than I understood it to be. Because to me, hospice and palliative care are married and they were the same thing, but I know that they’re not. Hopefully, I can just continue going on like this, and never have to come here.

Dr. von Gunten: You proved your oncologist wrong, right?
Absolutely.

Dr. von Gunten: What do you remember your oncologist saying to you about your prognosis?
It was not good. It was kind of grim. I had my original chemo was really, really extremely aggressive and I think that that chemo in itself was going to kill me. I had every reaction, it was horrible. I was constantly sick, it was terrible. But I know that they had to— the only way that I could get to the next point is to have that chemo. I did have to go off of it because I was going almost to the other side.

Dr. von Gunten: I’m remembering a conversation you had recently with Dr. Blair. Looking back, what did he tell you?
He said to me, and my daughters were there, he said to me he never thought that I would see 2015.

Dr. von Gunten: So, he thought you had about six months when he first saw you.
From my original diagnosis, they wrote me off by the end of the year, that was going to be it, but I proved them wrong.

Dr. von Gunten: Because I understand that the diagnosis was Inflammatory Breast Cancer. And yet here you are, two years later. So, what do they know?
Exactly and I plan on being here for a lot more. Now he tells me I’d probably outlive everybody. (laughing). It changed his mind.

Dr. von Gunten: Yeah. What other questions you have for Peppy? Yes?

(woman 1) Thank you so much for speaking with us today. I know you didn’t want the “P” word said to you, initially. How has your perspective of palliative care changed and what recommendations would you make for us as palliative care providers?
I think people have to be educated on really “what is palliative care” and that it doesn’t mean that you’re going to die tomorrow or you’re going to die next week, and it doesn’t mean “hospice”. It means the whole system of care. It means pain management. It means having somebody as wonderful as Charles coming to your house once a month and talking to you, and give you a lot of courage and a lot of moral support, and listening to you—I hate to say “bitch”, but complain about things or tell him happy things, or show him pictures of my family because I want him to. Because so many people here really don’t know or didn’t know my husband Charles, they just happened to have seen him at his probably worst part of his life. He was dying, and even when you met him, he had lost a lot of weight. I think just really explain to people what palliative care is because I think most people are scared. I think they’re really afraid of the word because it’s what we’ve been taught to think that palliative care, hospice, same thing.

But everybody, I can’t reiterate this enough. Everybody, this program is incredible. The more people that go into this, coming to the house it is just—for the person whose house you’re coming to, you don’t even know what you’re doing, but whatever you’re doing, it’s right.

Dr. von Gunten: Are there other questions? Yes?

(woman 2) What’s the most important thing, right here right now? What’s the most important thing?
Enjoy life and make everybody happy. Just enjoy every day, go out and smell the roses. And just remember that just when you think that your life stinks, that for somebody, it’s worse. So just smile at the next person you see and just remember, you don’t know what a smile can do to somebody else because you don’t know what somebody else is going through in their lives.

Dr. von Gunten: I was thinking in regard to the earlier question about palliative care and you said, “teach everybody.” Was that what I did with you?
I don’t know. Whatever you did worked so… Whatever you did worked!

Dr. von Gunten: The way I think of that is, labels are one thing but it’s what you do that counts. So. I remember you told me, no hospice word, no palliative care word.
But you never mentioned the words.

Dr. von Gunten: So, I took my orders: no hospice no palliative care. Who is Peppy Chernoff and what does she need today?
Right.

And then who is Peppy Chernoff is not just her cancer, and not just she’s a powerful Jewish woman from New York who is now a transplant to the Midwest where everything is strange compared to New York. And she has two daughters, who are very unique individuals, and a husband who was clearly ill from his heart disease. But then the shock of finding he had cancer, and then you focus on that, and it doesn’t really matter what your label is… did it help? Because I don’t think you’d see me if I wasn’t helping.
No. I would’ve… but you got me right away. You got me right away. How could I not fall in love with you right away? You know that I tell you this, I don’t want you to get a swelled head.

But if we can try and unpack that because that’s what each of these doctors that are here and the nurse practitioners, they want to capture that for themselves. What are the key things that you need, Peppy Chernoff, in all of her complexity, and in all of her wonderful drama, what does she need from a doctor like me in case I wasn’t here and one of them were stepping in. What would you know most need?
A feeling of genuine interest that the person that you’re talking to is really interested in you and they’re not looking at the watch because they have to get some place else. It’s just a bond that you know it right away. So just smile, have a conversation with the person, see what their interests are, what they’re feeling, and just be a good listener. As I said, I told you, they have to clone you. Take lessons from Charles, really, take lessons, watch him.

Are there other questions before we end? Peppy, thank you so much. You told me that this conversation today came out of something you said just a week ago when I saw you for a routine visit. Do you remember what was behind you saying, “I would really like to talk to anyone you want me to talk to.”
My reason was, first of all, I want to be able to do something, to give back for all the help that I got. I really felt people in my situation… I think that they’re lost. And anything I can do to make somebody have a positive feel for the disease. I just wanted to do something where I could talk to people… what’s palliative care. It doesn’t have to scare you. You can have a life. You don’t have to be just sitting, doing nothing. You can go back to regular business. Sure, you have bad days, and you want to stay in bed. You can do that every once in a while, we’re all human. I just wanted to do something for somebody else, because I thought it was important. Because I know my concerns from myself from the beginning and I think I want other people to know that you can be okay. You can have a daughter, get married at a hospice, you can lose your husband at that hospice. All these things, everything, the worse things in your life, but you can get through with the love and support of good people like yourself.

And I should say, I can’t say it enough, I have not met one bad person in this entire OhioHealth Riverside operation. Each person from the guy that parks the cars, to the gal that gives me the massage, to the doctors and nurses; the dedication. And my brother and sister-in-law saw it, my husband’s sister and my brother-in-law that passed away, they saw it. They could not believe the care my husband’s got. In the hospice and at Riverside, and the care that I’m getting. You know how I feel about the New York medical system that no other place is Sloan Kettering, but I found a home here at the Bing and OhioHealth has been incredible, and have not met one bad apple in the whole bunch.

Dr. von Gunten: I think in closing here, what I said to you, which I firmly believe based on what I’ve seen, when I first met you, you were so anxious that you would be overwhelmed by this. And yet, think of all that has happened, the courage that you demonstrate, overcoming the things that you’re afraid of, and you have coped with things that would seem that no normal human being can cope with. And you haven’t just coped with it, here you are talking about it and want to share that that’s possible to others. I think that’s pretty impressive.
Thank you. Me too. If I may do say so myself.

Dr. von Gunten: Alright. Thanks very much.
Thanks.