Podcast: A Conversation About Coping

Amelia: “Hello everyone and welcome to the podcast. My name is Amelia and this is how to Breast cancer at thebreastcancerguide.com.

In this episode we are covering a topic that I believe is core to the treatment journey and it is the psychological side…the mental well being side if you will…of the cancer treatment process. And it's a part that unfortunately is often overlooked or seen as secondary to the treatment itself, when in reality it is part and parcel of the healing process.

And today we're joined by one of the leading voices in coping strategies who's co-authored the book Coping with Cancer.

We're talking about how do you cope? How do you work through the emotions? How do you speak with others about the emotions that you're going through and the challenges that invariably come up when you're going through the cancer journey?

So here we go.

We have the privilege today to be joined by Elizabeth Cohn Stuntz, LCSW, who is the co-author of the book Coping with Cancer. She co-authored this book with Dr. Marsha Linehan, PhD. Elizabeth is a licensed clinical social worker, a psychotherapist in private practice in New York. She is a cancer survivor and a Zen student who after many years of involvement with services for people with cancer and their loved ones, developed a program of coping skills based on DBT which we’ll learn more about today — called dialectical behavior therapy. She serves on the faculty of the The Westchester Center for Psychoanalysis and Psychotherapy, and she's also extraordinarily generous with her time and joining us today to talk about these important topics.

Elizabeth welcome, so much, to our podcast.

Thanks for being with us today.

Elizabeth: Thanks Amelia. I'm happy to be here.

Amelia: It is our pleasure…it's our pleasure. So…I've been…as you also know…very much open with my treatment to our listeners and our subscribers. And they all know that I have included a psychologist as part of my cancer treatment path and it's a topic that is important to me to share. As well as to address just what a key element that is to the success of my treatment. Having psychology and a psychologist as part of that has been really important to me. And it's actually through my psychologist that I learned about your book, because he's always looking for tools and practices that are relatable. And that people like myself, can understand and apply without needing a degree in psychology, as both of you have.

So, one of the many things I love about your book is that the ideas and the tools, serve as a guide. And it's similar to how we build tools and practices on this platform. It's really to help people navigate their journey. And so I wanted to get right into it and talk about all the great things that are in your book.

I'll first start with kind of hearing a little bit about what inspired you to write this book? And what really moved you to pursue this purpose?

Elizabeth: I think the journey for me began when I was a very young adult and my mother was diagnosed with cancer. And then there were lots of losses of other dear ones around me. And eventually my own diagnosis with cancer.

So that first put me into it, but then I was involved in helping support that and helping start a cancer support organization in the late 90s.

And there was a report from the Institute of Medicine that said that effective ways to deal with the social and emotional sides of cancer were not keeping pace with the remarkable progress in medical treatment. And Dr. Linehan and I wanted patients and their loved ones to know that when life can feel so overwhelming and out of control, that there are still…it's still possible to find helpful ways to cope and be helpful.

So that was really my motivation for taking this on.

Amelia: And I'm so glad that you shared that because, I've also read works in the past — Dr. Jimmie Holland, who founded a lot of the psycho-oncology pieces and so much of that, to this day still is missing in a lot of the care that patients receive, their organizations and even from their own doctors. So that's why I feel this book is is so important to be connected to that kind of treatment.

One of the things…so early on…essentially the book cracks open the significance of using dialectical behavior therapy skills (DBT) as a key element of the cancer journey and the coping through that journey. Tell us a little bit about DBT skills and also how you learned about it. And importantly, the role it can play for others.

Elizabeth: So DBT was developed by my co-author Linehan. Linehan has actually been named by Time magazine as one of the geniuses and visionaries whose work has transformed our world. Because her skills are clear guidelines that haven't been studied with cancer but have been studied in lots of other challenging situations and that have been proven effective to help people become more resilient and create a meaningful life.

DBT skills include mindfulness. Now…a lot of jargon around mindfulness. But mindfulness really just means paying full attention to what's happening and one’s reactions. There are also clear skills to manage one's emotions…to communicate in important relationships and live a meaningful life. Linehan is actually a Zen master and I learned about DBT as a psychotherapist. I studied it with her and then became her Zen student. And her skills are practical translations of the wisdom of Zen. She took the age old wisdom that way and brought it into real life — how to do it. And her skills are now being validated by neuroscience. And our approach is also informed by my own psychoanalytic background.

Amelia: Yeah. And I love the fact that — I was so impressed with Dr. Linehan's background and the achievements there. And I think that…you know it's interesting…you talk about the jargon around mindfulness and I think a lot of times people tend to dismiss that or see it as something that is just theory, when in reality there is so much value to those practices and those skill sets. And how it can really help someone, especially dealing with something so significant. And that can stir so many emotions.

And so for me, one of the things that immediately struck me in the book is, you introduce us to the wise mind. This, middle ground where reason and emotion can coexist. Which I didn't think was possible…because I think so many times, right, we hear “be wise” and we really don't understand what that means and, I think how it is described in the book as this balanced middle is so important for people to understand. I'd love for you to share more about, the context around the wise mind.

Elizabeth: OK, wise mind is really a balanced middle. And I'm gonna go back to the D of DBT, which is the word: dialectics. Now that's also a big jargon word. But dialectics means that two opposite things can both be true. That it's possible to feel or act or think in more than just one way. And balancing those two seemingly opposite sides is central to the whole way we think about the book.

For example, it is easy (and I'm gonna take this into wise mind), but I wanna give you some context about the balance before I get to wise mind. So it's easy to oversimplify things and see them as one way or the other. And reducing the view. Some people say…and we can oversimplify how life looks or even ourselves. And life with cancer is not simply good or bad.

Actually, when we're diagnosed, we're neither completely healthy. And we're rarely dying immediately.

That it is possible…and we wanna see the more complex part of cancer that it is neither a total disaster or no big deal.

We're neither in control of what's happening…we're not. Things are happening in our body that we're not in control of and/or totally powerless. So the key in the whole curriculum here is balancing seemingly opposite thoughts that we might have overlooked. So that we talk about — we quote actually Desmond Tutu, saying “hope is remembering that light exists even when you can't see it that even after a dark night, the sun always rises.”

So now to get you to wise mind. Wise mind is that middle…that middle place between the two seemingly opposite extremes.

In a perfect world we respond proactively to what's happening while staying calm. And we both see the facts about it and our emotions, and we balance those extremes of those opposite perspectives.

So wise mind is that ideal balanced middle. Now, just as nobody stays in the middle of a balanced seesaw all the time…nobody stays in wise mind all the time. But wise mind is that intuitive wisdom when we look at both sides of that seesaw. When we look at both ends to come to a new understanding. When we're looking at the whole picture, going back and forth between: this is a drag and there's reason for hope. And that we go back and forth. And wise mind is that wise middle perspective that includes both of us.

Now she talks about wise mind as an intuitive innate sense of what we know to be true. And she says…and it's true…that it's part of each of us (even you). And that it's very easy to doubt our feelings or our choices and assume other folks have this capacity for that inner wisdom…and we don't always have it.

And while it's not always easy to find when we look at both sides of that extreme, we realize we can get there. Our wise mind is always there, like our breath or a beating heart that we don't always notice…but if we dig deep we can find it. And a lot of the practices in the book are teaching people how to get closer to that and ways we can get closer to that balanced middle more of the time.

Amelia: And I think it's incredible because I think what happens a lot of times, (as was the case for me when I was reading your book for the first time) is that I didn't even think about it that way, right? So it was understanding what I was actually processing…the emotions…and how I was and how my mind was actually working through it. So I think the fact that you enlightened us to this notion of the middle…right…the wise mind…the middle balance. I think it's something that, while again, intuitively, all of us…I think it requires someone to help us understand it in order for us to recognize that it exists, right?

And that's what's missing a lot of times when you get a diagnosis and you're in the thick of it, you're not even thinking about the emotions. And I think one of the things that I so appreciate about reading this is to help me identify those things. Because I think we're skilled at identifying other pains, right? This hurts. You know…my arm hurts…or that. But I don't think we are as skilled at really identifying the mental side of pain, right?

Elizabeth: And identifying how we're feeling. We have so many judgments of: I shouldn't be scared…I shouldn't be complaining…I shouldn't feel vulnerable…or I'm gonna be so overwhelmed if I let myself be sad. So we don't allow ourselves to acknowledge how we're feeling because we feel like we'll just be overwhelmed and we won't be able to cope.

And honestly, Amelia, I did that myself and I had been a therapist for 30 years when I was diagnosed. But I was like, “Oh no, I should be strong. I can't be scared.” And I wasn't gonna allow that either. Even though that's not what I said to my patients. I had this double standard for myself. But I think the value of DBT for me and I think for so many of us, is that because they’re concrete skills to teach us to manage those emotions, we're less afraid to let ourselves know how we really feel and validate them. And then when we're reacting in ways that are stronger or not in our own interest…how to rebalance how we're coping. And that there are ways to do that when we know that we can rebalance coping that's not in our interest. We’re less afraid to acknowledge how we are coping to begin with…that we can't change anything…until we first face what we're doing or not doing.

Amelia: That's exactly right. And that…I mean, for me…like, that leads me right to the to the next question. I want to talk about is, you know, Chapter 3: how to manage emotions. I spent a lot of time in this chapter and I keep going back to this chapter in your book because there are so many principles in this that I was…that again…I mean, one of the many things I love about it is you write it in such a way…you and Dr. Linehan…that anyone can really understand it really well and apply it because it's really in that personal touch. But it's such an a-ha because it's stopping to say: “how am I managing this emotion” and even the terminology that we use for an emotion.

So tell us a little bit about this…how to manage it. And I know you have a term …a phrase: “name it to tame it”, which I love. Tell us more about that please.

Elizabeth: Well so the first piece is that we can't manage or change anything until we accept that it's there.

And the very first thing we have to do is acknowledge how we're feeling.

And this is very important.

Amelia: It’s hard…it's hard to do that. 'cause it's scary.

Elizabeth: It's really scary. That's such an important point because actually emotions have a bad reputation. We have all these judgments about our emotions. And we have this idea that they're gonna overwhelm us, or that they're bad. And that we shouldn't be feeling that way. We have negative biases.

But the truth is our anxiety and fear about cancer makes sense. If there's a threat to our life, we all want to feel safe and secure. And fear and anxiety are very useful messages because they tell us we need to do something…we need to call that doctor…something is wrong. Our sadness is reasonable if we have to accept that we may not be able to take part in treasured activities or look out for our family in the same way.

And it might give us a useful message to reach out for support.

Anger…common re-action to pain…and it's understandable to be frustrated… or agitated…if our health compromises cherished activities or relationships.

And it lets us know that there's something to do. So the fact is — on research — it's neither possible nor desirable to avoid these feelings. And trying to block them…research shows us…actually makes them more intense. And attempting to control those emotions can increase stress. So what we want to do in an ideal world is to understand that first of all, our feelings are not static and they shift after 90 seconds.

Amelia: Wow…So after nine after 90 seconds, our feelings shift?

Elizabeth: Yes, now you may say to me that's not my experience, though.

Amelia: It's my experience. It's absolutely my experience.

Elizabeth: OK. Well…but for some people they're feeling…hold on…because they have all these assumptions about them and those assumptions of “Oh my goodness, I'm terrible for being so upset….people are gonna think I'm a whiner…people are gonna think I'm a complainer.” And we have all the…“I shouldn't be scared…I should be stronger.” All of those judgments and opinions keep those feelings going. So that's why we even fight letting ourselves know about emotions.

But the neuroscience research is identifying how we feel, naming that fear, anxiety, sadness, anger, whatever it is — actually helps us calm ourselves.

Labeling our emotions has been proven to rebalance the nervous system. And that research has shown that understanding and identifying emotions reduces their intensity. And there's actually been research done with cancer patients and those who could categorize and label their emotions showed improved coping, as well as, other health benefits.

Now, as you said, that's easier said than done.

So in the book we have separate chapters for some of the major emotions that you feel and a lot of words that can be used to describe them.

Descriptions of what it feels like in your body when you're frightened, and how your heart rate increases and how your muscles tighten. And giving you guidelines to help learn ways to identify some of those emotions.

Amelia: And that is so important because even, I mean, for me personally…I'll share…that even a turning point for me was at first, when I first started having my diagnosis and going through everything…I was calling it all the time…you know “my cancer,” there's “my cancer,” that “my cancer” and one day I thought to myself why am I calling it “my cancer”? I don't…I don't…it's not mine. I don't want it. I don't wanna keep it it. It's “THE cancer” and even starting to separate myself from it…to be honest…I found it soothing. I found it as: it is something that is not permanent, right? And so therefore I was able to feel better about even saying that. It almost gave me, you know, you used the word “control” earlier. And I think control sometimes has a bad connotation. But I can see it as a positive thing as well.

Elizabeth: Oh absolutely. Both sides have control.

Amelia: Exactly, right? So it gave me a sense that I had a little bit of control because it was something that I was drawing a distinction on, and that was important to me.

Elizabeth: That is such a great point, because when people say “I am angry” or “I am sad” they're letting the emotion define them. And Linehan has taught us that it's better to say: “sad feelings have arisen and then they move away.” Some, you know: “anger has come.” You know…“I'm feeling”…but not…“I am angry.”

That we don't have to let those feelings that change all the time define us.

And when we think they're gonna define us — then we're not even gonna acknowledge that we feel them. That I'm not anger. I have moments. I feel angry. I have moments. I feel frustrated. But those are moments. And those things ebb and flow constantly.

Amelia: Totally, totally. And that is…I mean…that's again…that's why this is such an important tool and important part of the healing process.

And I think it also helps with how we communicate.

And I know you dedicate (which I love), a couple of chapters to relationships, both personal as well as professional. And I found that very helpful.

That is one of the toughest terrains to us to navigate…is how do you communicate all of these pieces and all these emotions and pieces to the people closest to you. Or even those that are colleagues…not necessarily close to you…but, you know, are in your ecosystem. So what are some, give us some perspective here and some tips on how cancer patients can effectively communicate with others about the emotions and what is happening at any given point in that journey.

Elizabeth: OK, so the first thing is that in relationships we have to balance our perspective the same way we have to balance our perspective about how we're responding. We need to balance our perspective about how we and others are… where the relationship is going.

And one of the ways that DBT skills teach us to balance our perspectives, is that there's a skill that's called: “Check the facts.” What are you assuming? Are you getting yourself more panicked because you're assuming what that scan is gonna show before you even know the facts.

Amelia: Yes..that happens so much.

Elizabeth: It happens to all of us every day, right?

So similarly in relationships, we make all kinds of assumptions..like…I know what that other person is feeling or thinking about me. And so we teach people to check the relationship facts. So, some of the common assumptions that may or may not be true…are that “cancer will create more distance” and that “people won't want to be with me if I don't act, you know, in the same way.”

The fact is sometimes that's true, and sometimes cancer creates more intimacy with you and other people, right?

The idea that one is responsible for the stress of their loved ones.

If we take a more balanced perspective of that assumption: one’s cancer is not in their control. And so you can't be responsible for something that's not in your control.

The assumption that they shouldn't ask too much of a loved one because they’re already too stressed. And/or that asking is a sign of weakness.

We teach people about the distinction between needing something or someone (which is a reality of our world) and being demanding or being needy (and being needy is a judgement and just an opinion that implies someone is pathetic).

And we teach people concrete skills of ways to ask that are not selfish or demanding. That there's a difference between respectful asking and demanding. And we do still need to ask others for what we want and need. But there are ways to do that.

Amelia: And I think…you know…one thing…you also mentioned a moment ago about…what it teaches us about ourselves and how we respond to emotions.

You know, for me, one of the things that I started to realize more is even telling people that you love them, right?

I think sometimes we assume that people know that we love them. But I think sometimes if…you know…there's a lot that comes from cancer. But one of the things that it suddenly reminds us of is the impermanence of things.

And I think it helps us too, you know, identify the fact that you have that feeling, but not expressing it, right?

So that next step was was one of my takeaways of…I need to be more cognizant of that when I talk to the people that I know love me and who I love. They may not. You know…they need to hear it, too. I guess it's one of the things I’m trying to say.

Elizabeth: Yeah…well…so that's so important because when we're talking about balance, we're talking about what else might be true here and what's the other person’s perspective.

Like…does the other person need to be reassured that you love them. And what are they thinking? And that their perspective (even if you're in conflict with them) might have some validity? What could be the kernel of truth in what they are thinking and acting?

So that you want to balance what you are thinking and assuming and what could be the other persons perspective.

Amelia: And I think that's the part of just…again…expressing and understanding…kind of seeking to understand. And now I'm making those assumptions that…we think they know about us…or that we don't know about them.

Elizabeth: …or that they know they are loved and they don't need to be reassured (to use your example).

Amelia: Exactly. And I think that everyone you know needs that element.

Elizabeth: Yeah. We all do, right?

Amelia: Yeah. I mean…and I think…not only have we…I think we've experienced more than ever in the last several years…like, last couple years..I should say, over this pandemic that we've all been living with…is the vulnerability that exists at any point in time in our lives and the need to be able to let people know how you feel.

You also write about living meaningfully, being grateful. You know…we talked about mindfulness and applying mindfulness…and these are kind of all key tenets of the strategies that you give your readers.

Tell us more about this piece, please. Because I know that this can be (and I hear this, and I know you do as well from other folks) that when they're in the middle of the journey it's sometimes hard to find that meaningful side. Or to even express gratitude. And that's really tough. And I'm a big gratitude practice…I have a gratitude practice…I've done it for years. And I've reinforced it even more in the last almost three years that I've been in chemotherapy.

But tell us about those tenets of your strategy.

Elizabeth: So as you just mentioned, after a cancer diagnosis, we may have a change of perspective. Physical, emotional, maybe financial comfort and security may be more important.

We may be facing more directly uncertainty about not living as hope, as long as we hoped or plan.

And that sometimes doing that offers what Marsha calls a wise mind perspective like you had about what's meaningful. And that…maybe I want to be saying “I love you” more.

For some people, issues of faith and spirituality may be more central as people search for connection to something beyond themselves that can guide them to feel less separate or alone. Or to help find ones truth or understand a confusing world.

So here, I'm defining spirituality as a connection to something greater than oneself.

And there has been research showing that connecting to spiritually is now considered an essential element for optimal supportive care for patients with advanced cancer. Because research has shown that it links to better immune functioning, lower risk of developing cancer, greater physical and emotional health, pain tolerance, and even survival.

Now spirituality can be expressed in many different ways.

For some it's in gratitude. For some it's making a difference to others. Others may do it through causes or political views, or sharing enduring values or life lessons. For some, it's being in nature. For some it's being nourished by the wonders of science. For some it's traditional religion.

But even if others don't share your sources of comfort and spirituality it’s possible to find secular ratings and meditations that do that.

Research has shown that people focusing energy on who or what was most meaningful helped people with advanced cancer feel less hopeless and depressed.

So we work to help people focus on the people and activities that they find most significant, reaffirming their priorities. Are there, certain places that offer solace or traditions that offer hope and a sense of belonging? Or activities that give them a sense of purpose or values and ideals.

But we really think it's very important to help people remember that when they are feeling alone or disappointed in themselves….or in personal or spiritual relationships…at this point, to remember that our relationships or ourselves or even our spirituality aren't simply black or white — perfect or useless.

And to be compassionate, to remind ourselves that none of us have ideal relationships. Or always live in tune with our values. Or always live as meaningfully as we want and need. And to remember that feelings and thoughts change. Relationships evolve, and that cancer may be a time to renew or find personal, spiritual or communal relationships or connections that temporarily seemed inadequate.

Amelia: Completely, completely agree, and so well said. And I also appreciate the fact that you really expand the definition of spirituality and what that can mean. Because I think for a lot of people it is a more traditional definition. And I think the fact that you shine light on ALL of the things that means…you know…how we connect. Whether it could be nature…it could be the things that give you solace and comfort. I mean…that is…even that in and of itself…I think broadens the perspective of someone who may have…and they may find things in it that they don't today recognize as spirituality in their world. Which is so key to really balancing all of this?

So in closing, you know, we have a tradition within the the group here at how to Breast cancer that we always talk about. What's the key takeaway? If folks remembered nothing else? Remember this. So what would you want that “remember this” to be from our chat today with the listeners?

Elizabeth: I would say that there's no one right or wrong way to respond. That, however, you're responding is totally understandable. And that the goal is to really, honestly look at what's happened and how you're responding and have faith in your ability to cope. And realize that there ARE ways to rebalance responses that are not always in your interest and make some changes.

Amelia: So, well, said. Elizabeth again — thank you so much for being with us today. We appreciate your insights. This book that you and Dr. Linehan have put together has just been amazing. Coping with Cancer — it is absolutely fantastic.

You know one of the things that we also do…is we have in our monthly newsletter…we do a bookshelf sneak-peek and we will be featuring your book in our bookshelf for this month's newsletter. Because it is just amazing.

Thank you for listening everyone.

Until next time.

And be well.