Beyond Survival: Weaving a Meaningful Life after Transplant and CAR T-cell Therapy

[00:00] Moderator: Thank you again for joining us and welcome to the workshop Beyond Survival, Weaving a Meaningful Life After Transplant and CAR T.

My name is Penina Seidman and I will be your moderator for this workshop.

Before we begin, I'd like to thank Sanofi, whose support helped make this workshop possible.

It's my great pleasure to introduce today's speakers, Dr. Areej El-Jawahri and Dr. Lara Traeger.

Dr. El-Jawahri is the director of Bone Marrow Transplant Survivorship Program and the co-director of the Outcomes Research and Education Program at Mass General Brigham Cancer Institute.

Her research interests include investigating patient-reported outcomes, developing approaches to enhance patient-centered decision-making, and designing supportive and palliative care interventions to improve care for hematopoietic stem cell transplant recipients and their caregivers across the continuum of the illness.

Dr. Traeger is a clinical psychologist and associate professor of psychology at the University of Miami and assistant director of population sciences at the University of Miami Sylvester Comprehensive Cancer Center.

She conducts patient and family-centered research to enhance quality of life and quality of care among transplant recipients and other adults affected by cancer.

Her work focuses on developing and testing strategies to enhance resilience, health behaviors, and patient clinician communication. She has collaborated on several trials of supportive and palliative care interventions to improve care and quality of life for transplant recipients, including those with chronic graft-versus-host disease.

Please join me in welcoming Drs. El-Jawahri and Traeger.

[01:41] Drs. El-Jawahri and Traeger: 

Thank you so much. Thank you for having us. And hi, everybody. It's really a pleasure to speak with you today.

Dr. El-Jawahri: I wanted to start by just kind of talking through why we actually thought this is a good topic to do here. I feel like we often see talks at this symposium and others about sort of focusing on psychological distress after transplant and CAR T.

We think about the trauma related to these really difficult events. But my experience as a clinician has really made me appreciate the resilience I see in patients all around me each and every day. And that actually was the impetus for this talk.

[02:20] I have been particularly touched by watching patients make meaning and finding purpose after going through such experiences and such adversity. In some ways, the experience of going through transplant or CAR T or cancer treatment at large, helps these patients shape their priorities, define what's important to them, and cultivate their sense of identity.

Of course, we don't wish this on anyone, but in the context of seeing that clinically over and over again, and being really close friends with Dr. Traeger here, I often wondered about those folks and sort of how they were able to do that. I just found that to be so inspiring, and to me at the time, as a simple oncologist thinking about this, I really thought about it as, well, some people got it, some people don't and that's the basis.

I learned from Dr. Traeger, talking to her about this, this is something we can actually potentially cultivate and really a skill set that people can develop.

First of all, I think this is a skill set that can apply to any adversity in life, not just necessarily going through a transplant or CAR T. So I'm hoping that as we do this talk, I learned from Dr. Traeger how to do this in my everyday life.

[03:42] But really, I want to walk us through our objectives for today with the next slide.

So our learning objectives today is to learn strategies to make sense of what you've been through during and after a transplant and CAR T, and really putting meaning to the importance of those experiences.

In the process of doing so, I hope we can identify what has been true about yourself and your identity throughout these experiences and really use these insights to move beyond unhelpful expectations or assumptions that you or others hold for your life after transplant and CAR T.

Perhaps we can really work together on building that meaning-making skill set that can really help us in many ways cope better with transplant, with CAR T, and with adversity in life. And it's something that we can actually cultivate and work on.

[04:40] We are so grateful for the opportunity to talk about this topic, because honestly, meaning-making is part of basic, the basic human experience. The need to find meaning is a basic part of our humanity. And certainly profound experiences in life like dealing with cancer, undergoing stem cell transplant or CAR T can often threaten that sense of meaning and lead to loss of meaning.

So life after transplant and CAR T is really a springboard for meaning because maybe there's a loss of meaning and the need to find it and also the ability to find it and the process of finding it becomes really really important. You might be here because you're curious about this topic or you're on a journey to find meaning yourself. We hope that the strategies we can talk about today will be helpful to discussing as new things to try to validate maybe what you're already doing in your life that is making meaning. Because again, as I mentioned, a lot of our patients do this already, but also can give you practical strategies that can actually help you really cultivate that meaning-making process.

[05:52] I do want to highlight that there is an importance to meaning-making after transplant and CAR T that is supported by the literature at large.

So not only is this part of our humanity and our basic human instinct and human desire when we deal with adversity, but we also know that having a sense of meaning and purpose can improve quality of life, can reduce psychological distress, can really increase the sense of purpose and maintain hope for the future for patients.

Again, I've seen this clinically all the time as I really find patients who are able to find meaning in their transplant and CAR T experience that are able to cope with whatever is thrown at them.

[06:38] One of the things you'll hear from Dr. Traeger later on is our collective experience together, taking care of patients living, for example, with chronic graft-versus-host disease.

I've always been fascinated by the concept that there are patients living with chronic graft-versus-host disease that have very severe chronic GVHD symptoms, like a lot of skin, eye, mouth symptoms, lots of organs that are involved, yet their quality of life is maintained.

Despite a very significant symptom burden, they're able to sort of live their life with the limitations that this illness has imposed on it, and then there are others that are really burdened by the physical and psychological symptoms of illness to the point they're not able to really move forward.

To me, to some extent, what meaning-making is all about, because I do think what I see clinically is that some patients are able to make meaning and find sort of their resilience and identity despite this experience. And that makes them feel better in general and have a general sense of wellness.

So again, in the past, I used to think of this as this is you either got it or you don't, but I really have learned a lot from Dr. Traeger about how this is something that we can actually potentially cultivate.

[07:57] I hope that when we think about the importance of meaning-making, I want us to kind of think about the potential downstream effect of that on these concepts. This idea is not only about sort of really making meaning to make us feel proud of our own identity, but it really is a way to help us improve our quality of life, our sense of well-being. And there are really data and literature that backs this idea behind it.

[08:31] When we think about meaning-making, there are kind of two different ways to think about it. The most common way that I think, again, most of us start thinking about it is to apply it to a specific situation.

[08:45] So this is the idea of understanding what you went through when you went through stem cell transplant. Understanding how to make meaning out of why a particular event happened to you, like getting cancer, like undergoing CAR T.

But the other way to think about it is that meaning-making, can be an overall mindset, that you are constantly moving towards recognizing your own personal sense of meaning and purpose in life, regardless of the events that are happening.

[09:19] This idea of a global mindset of meaning-making is really appealing because you can apply that, certainly can apply it to specific situations related to cancer, related to transplant, related to chronic graft-versus-host disease.

But you could imagine if we make this into a larger global concept of a mindset, we're able to apply it to just about any stressor in life that we have to cope with.

[09:50] And so here we show a picture of Fred. Dr. Traeger told me about Fred. So Fred is the tree that grew from pure concrete on an abandoned bridge that linked the Florida coastline to the Florida Keys.

And I think the reason we put this here is because often people kind of pass by Fred and be like, why is the street here? What's going on here?

And this gets to this idea of when we think about meaning-making, we think, you know, we often think about it as you either have it or you don't have it or that meaning-making comes from outside of you.

But here's Fred standing in the middle of concrete. And so, we think of meaning-making as really a life skill that can be enhanced, almost like a dynamic process that you can strengthen like a muscle.

[10:39] This is something you can work on, just like you work on sort of working on your cognitive function, working on sort of getting your physical energy and stamina after transplant. This is actually a strategy that you can cultivate within yourself to really help you develop more than meaning-focused coping or a way to deal with adversity related to meaning-making.

[11:03] We are going to take all of our energy in this room to really focus on what those strategies are. And we're not going to give you an exhaustive list of these strategies, but some strategies and some simple tips and ways to integrate in your life to help you work on the skill set over time and really sort of cultivate that within your own sense of identity.

[11:28] Dr. Traeger: Thank you so much to Areej for jumping us off into what we're talking about today. We really appreciate it because it just sets us up for what we're doing next.

[11:39] We're going to focus now on five different strategies for cultivating meaning-making. Just like Areej said, this is not something you either have it or you don't. This is something you could actually cultivate.

I want to just emphasize that other point, which is that it's not coming from outside of you that I have meaning in my life because of all these things going on, or I don't have meaning in my life because of all these things going on, that it really comes from us.

So not only is it something that you can cultivate, but it also is something that needs to be intentional. So, it just doesn't happen on its own.

All the strategies we're going to show you today are building on that idea because they're about being intentional. It's about thinking about what you've been through in an intentional, thoughtful and reflective way.

[12:30] If any of you out there want to come along with us and try some of these exercises while we're talking about them, You may want a piece of paper or pen, something to write with, or just jot down your ideas somewhere and come along with us.

[12:41] We only get you for an hour, but we're hoping that the exercises and the strategies that we talk about here can be something that you practice forever after this. That would make us really happy if we hear that that happens.

All the strategies we're talking about, we draw them from a lot of research that's been conducted with people who've been through transplant and CAR T and other types of treatments for different cancers, and at the end of this program, we'll show you some links to learn more about what we're talking about.

[13:11] So we're going to dive in. Remember when Areej said that when we think about meaning-making, it's not just about picking something difficult that happened in our life and trying to make sense of it but really having meaning-making be a mindset that you carry with you as the lens that you see life through.

The first strategy we'll talk about is finding that meaning-making lens.

What you see on this slide here is a few sources of meaning in your whole life, not just since your diagnosis, but in your whole entire life. What you see here, we draw from meaning-centered psychotherapy, which is a program that was developed at Memorial Sloan Kettering by Dr. Bill Breitbart and his colleagues.

We're drawing from that to share with you some of their pearls of wisdom. which is that when you think about the sources of meaning in your whole life, think about your whole life history.

Since you were little, what were the things that happened in your life that were important, that had meaning to them? What are the things happening in your life now that have meaning? So draw on the fact that you have this entire life history that has been important.

[14:21] The second area to think about is your responses to challenges. None of our paths in life are smooth. And so, when you've had challenges, and not just the challenges related to your cancer diagnosis and treatment, but really, or, you know, any other disease that you have, what other challenges have you had in your life? How do you see yourself having responded to them? What tends to be your strengths in responding to challenges, your own patterns? That is part of who you are.

Areej mentioned that she's hoping that you can take these strategies and not just apply them to your challenges related to diagnosis and treatment, but to any kind of adversity that you might face.

I would imagine that in your life, you can look back and say, I got through this thing and this is how I did it, and that really is part of who you are. That is part of your identity, and that carries meaning.

[15:19] The third bullet is what you create, and I don't just mean art projects. I really mean what you've built and created and brought to this world that might not be there if you weren't here.

The relationships that you build, the things that you build, the ideas that you shared with the world, and maybe this also has to do with some art along the way, but really what have you created and what also does that say about the meaning in your life?

I would argue if anybody here is saying, I haven't created anything, I need to challenge to really think more carefully, ask around you and find out and put your finger on what it is that you've created. There is going to be something.

[15:55] Finally, that fourth bullet. How you connect with the world. How you connect with people in your life. How you connect with people you meet passing by, how you connected with people who were in the hospital with you or in the waiting room with you. That you saw once and maybe never again, but how you made connections then.

This could also be about how you connect with nature.

I was just talking with one of the other folks on BMT InfoNet, and we were joking about how we're both kind of introverts. I'm not out there, you know, being super social all the time.

But I do have a way of connecting with the world and with nature and with other things and people and parts of the earth around me. That's part of who I am.

I encourage everybody here to maybe jot down just one thing about your way of moving through the world and your patterns of connecting and creating and responding to challenges that make you who you are.

[16:51] The thing that I love about this exercise, it's deceptive, but it really helps you widen your lens to your whole being and your whole self so that we're not just our list of symptoms, right? We are a whole person. We matter and we have things about us that make us who we are.

So if anybody here feels like they have at times struggled with finding that sense of meaning, Remember Areej's words that we want to think about this as a mindset.

I just put this in as a reminder to every day when you're struggling to remember that opportunities to find meaning exist in every moment, including the one right now.

[17:29] Okay, so moving on, we can have this mindset approach and we can also take that mindset approach and we can apply it to difficult events or aspects of adversity in our lives.

What we're going to do now is talk through some questions that you can ask yourself to start to think about your specific experiences with your diagnosis, with your experiences during and after transplant or to CAR T, to try to open that box of memories, reflect on what's in there and try to possibly think about things in a different way.

[18:05] Some of the questions that I have here are designed to help us do that, to think about what you've been through in a different way. When I start this exercise, Areej and I run groups together for survivors, and I might say, let's start to think about your transplant experiences and after.

And people will say, what do you mean? I'm always thinking about it. I'm never not thinking about it. And even when I'm doing other things, it's a little bit in the back of my mind.

So I would just argue that what we're trying to do here, again, is just create a new lens for looking at this. And I'll go into a little bit more about what I mean by that. But we can start with the questions that you see here.

A lot of times people talk about how life has changed. So why don't we give some air and some space to you being able to reflect on that?

A lot of times we get, you know, maybe encouragement or pressure to move on, move along, be thankful, be grateful for what we have. But if you want to think a little bit more and take some time to do that, to think about what has changed, let's put some language to that.

Let's talk about the thoughts you have about what has changed, your feelings about that. Let's give that some airtime.

[19:16] Other things to think about is, you know, along the way, you may have had some experiences that really stand out to you. What did someone else do or say to you that has stuck with you?

So I remember one of our group members in the groups that Areej and I run talking about how difficult it was during diagnosis and then during those initial days of hospitalization during transplant. And she said that one of the care providers, I think it was one of the doctors on her team, wasn't someone she was particularly close with, but came into the room during her hospitalization. And somewhere in the conversation, he turned to her and he said, I've got your back, and she never forgot that.

And that may have been just a one-off thing that any one of you may have heard at some point, but for her in that moment, that stuck with her. And why is it important for us to think about the things that have stuck with us?

Because it also tells us a bit about who we are and what we needed and what was there for us at a time.

And she was able to take that and realize there's a meaning to that, that in that moment when I was at my, what I felt was my most vulnerable moment, I needed to know that someone had my back. That is something that she could actually recognize as a need throughout her life, that she just wanted to feel like someone had her back. And she always had other people's backs, right?

So this was so important for her to hear. And so again, for all of you here, what's the thing that you remember somebody saying to you? And why was that important? What does that say about your experience?

[20:57] Then a third question you can think about is, what about your experiences do you wish other people understood more? It's not a trick question but it is a question that helps us think, what I wish people understood more might be that thing that is really something I'm struggling with or having a challenge with because I'm not feeling necessarily understood. But there's something that I went through that is hard for other people to understand. I wonder here if any of you can relate to that, whether you went through treatment or you are a caregiver or you care for somebody who's been through this, that there's something that you've been through that is hard for people to relate to or to understand.

Maybe they aren't asking about that, but that's something that you really want to think more about and possibly share with others.

[21:46] So why are these questions important? They're just one of many that you can ask yourself to start to think about your experiences, maybe with a different lens or a different light.

I hope that there's at least one of these questions here that you want to think about more to help you start to make a different sense of what you've been through and knit that story together of what you have experienced.

[22:08] I want to focus more on why this is important, because all the things that Areej and I have talked about so far are really about giving space and air to what you've been through, to your experience as a whole person. That you are more than just a list of symptoms and issues. You're a whole person who's been through this. You have your own thoughts and feelings about what you've been through, and you need to make space for that.

[22:34] And we don't always do that. So that issue of meaning-making, meaning not just a skill you can build, but also needing to be intentional about it. That's what we're talking about here.

You want to make space for all those thoughts and feelings, because sometimes we pick and choose and we try to shut out ones we don't really want to deal with. But if you think about it, what you've been through is really complicated. It has been difficult, right?

So it's natural and normal that some of the thoughts and feelings you have are going to conflict with each other, or seem to conflict with each other.

[23:08] So how many people here have the experience of feeling grateful?

I know we can't have a raise of hands because we're all remote, but you might have a feeling of being grateful for being alive.

At the same time, you might have a feeling of being resentful or frustrated about what you're going through now. You can feel grateful and frustrated and resentful at the same time.

It can be hard because we sometimes feel like we have to pick or choose a side. But what we're saying here is think about your experiences as a whole. Every thought and feeling, no matter if it feels like it conflicts with each other, they all need their space. And by giving them space, you get to focus on what is really true for you.

[23:51] Dr. El-Jawahri: Lara, can I just add one thing here?

Dr. Traeger: Yes.

Dr. El-Jawahri: I think one of the things that I noticed in some of our groups with patients with chronic graft-versus-host disease is obviously, people have different levels of comfort reflecting on their experience and answering these questions.

At times, for those of you naysayers out there, you may think, gosh, it's kind of silly for me to really think about these questions and answer them.

I remember in particular, actually, a patient of mine who was in the group who said, no, this is not what I do. I don't go there, right? I don't process my emotions.

He was a lovely gentleman who was like seven years out. This is too emotional for me. This is too touchy feely for me.

I want you to just know I've heard this before and we've heard this before many times. And sometimes it's about going through the exercise. Once you go through the exercise a couple of times, you will see something that you haven't seen before.

So, it's really remarkable to me because this same individual who at the time was like, this is not what I do, is now embracing this and actually running one of our groups with our patients to talk about these things of how important it is.

I just want to highlight that and just talk out loud about it, because I do think at times we may feel like this is a little bit outside of our comfort zone, and that's perfectly okay.

[25:16] Dr. Traeger: It's actually a good point that you're bringing up. So I'm going to build on what Areej is saying, because it is true that we don't always feel comfortable opening up that box. Some of us just don't feel like that's typically what we do.

So what I'm showing you here is actually a picture of a messy drawer. And I don't know if anybody has a drawer that looks like this at home, but this is a metaphor that we use.

It comes from a treatment called cognitive processing therapy, which is a treatment for trauma, actually. The idea is that for many of us, when we go through something difficult like, you know, transplant or CAR T, we might just be white knuckling it through.

You white knuckle it, you get, you do what you need to do. You put the next foot in front of the other and you keep walking and you keep moving forward.

[26:04] As you go, all the experiences that you're accumulating, you're not really thinking them through. You're just kind of tossing them into your memory bin, just like you see this dresser drawer with clothes, just tossing them into the drawers; we're not really processing things.

We're not knitting our story together. We're not making sense of what we've been through. We just kind of tossing these experiences into our memory.

The issue with that is that when we do that, sometimes the way we encode things, the way we store these memories, we don't always put them with the most accurate understanding of what has happened. Because it's happening so quickly, we're just tossing it in.

[26:41] And I don't know if any of you have had that experience of the drawer popping open and something falling out.

So the analogy to that would be, let's say you're going through life and there's like a certain smell that comes up or a particular article of clothing that you remember from the hospital or you drive by your transplant center or something happens where a memory of what has happened just pops out when you least expect it and when you may not want it.

This can happen to any of us, and there's some value in opening up this drawer and taking out what we see in there, going through it and trying to understand it and make sense of it so that we can put it back in the memory bin or the dresser drawer with a better understanding of what it is.

[27:23] I just want to share one of the examples of this wonderful woman from one of our groups who, again, wasn't someone who was opening up that box and taking out her memories and making sense of them or talking about her thoughts and feelings.

But this woman in our group had told us at the end that she started off with coming into this group after her experience with transplant and the years after, always in the back of her mind, having the sense that she was weak. That the treatment weakened her and that she was now a weakened person.

Through the group, she watched all the other group members talk about their experiences and the way they handled them, and she thought to herself, these people have been through such difficult things.

Look at the strength they bring to bear on all these things they've been through. They are so strong, and then all of a sudden it kind of hit her.

Wait a minute. Why are they strong? And why why am I weak? Maybe the way that I'm thinking about myself isn't actually true. Maybe, maybe I am strong too.

That's what she pulled from this experience of talking about what she'd been through and hearing other people's stories is she realized like the way that she had stored the memories of what she'd been through had something inaccurate about it that was not helpful to her. That was that idea that she had.

She was able to reflect and store it differently, and she was able to find her strengths.

[28:49] The other piece of this is finding what's true for you, which is the strengths that you have brought to bear. What has surprised you about the way you've been able to get through this?

Everyone here, I imagine you look back and you say, how did I do that? But I would love for you to answer that question.

How did you? What did you bring to bear?

If you say, well, it was other people helping me, I would argue that that probably means that what you brought to bear was your ability to connect with people and have those relationships that then were there for you when you needed them.

Whether you had support or you felt like you had gaps in your support, something was there that helped you move through this.

[29:32] If you open up that box and look at the memories and the experiences that are inside there, you pull them out, you organize and you see what's there. You knit that story together, you put it back in those drawers in a different way that's maybe a little more accurate and a little bit more helpful. Just to add to this, this strategy

[29:54] Dr. El-Jawahri: Just to add to this, the strategies to cultivate meaning-making don't necessarily all have to only be about how we think through what we've gone through and think about our lives, but we can also take that information about who we are and what is important to us and apply it to make better well-being.

This comes from the positive psychology literature. We're going to kind of walk you through a couple of sort of concepts here and exercises that people can do that can really promote that helpful state of mind.

[30:23] The first idea in positive psychology is that the lack of physical symptoms is not the same thing as wellness. Just like having physical symptoms doesn't stop us from feeling well.

This is kind of the point I was making earlier about living with chronic GVHD. That regardless of your symptoms, you actually can foster wellness through your strengths.

What we have listed here today is several states of minds that can foster that wellness.

Gratitude, compassion, satisfaction, peace, creativity, purpose, humor, optimism. There are a lot others that you can think about, you know, joy, independence, freedom.

[31:11] Picking something that really resonates with you and thinking about sort of your state of mind today, tomorrow, the next day. Really think of ways and strategies to help you be in that state of mind. Bring that state of mind, whether it's gratitude, whether it's peace to your every day and make it part of your day.

Sometimes you're sharing it with your larger network and say, hey, I am focused on gratitude today and that's my focus and that's what I want to do.

It's remarkable how much that can really make a difference in sort of your outlook and your state of mind.

[31:46] I just want to give an example of this that I've seen done. I have a patient of mine who basically did a simple exercise. He loved gratitude. Gratitude was the state of mind that he really wanted to focus on.

He simply went through the exercise at the end of every day of writing down two things that he's grateful for at the end of the day.

They could be related to his experience with illness. They could be related to something related to life in general. But what's really, it's a very simple exercise.

[32:22] What was really remarkable about it is like he's like every morning, despite how hard the day was, the day before was, I kind of woke up feeling better.

This is the idea of leveraging these, and there are a lot of different ways to leverage these, right? It doesn't have to be journaling. It doesn't have to be writing things down. But really kind of bringing this to your day can help promote that positive state of mind and can lead to some meaning-making as well.

[32:48] Another strategy, and this is the last strategy that we can share in that same vein of positive psychology, is really to foster opportunities to be engaged in things that matter to you.

Again, this doesn't have to be this big important thing, but can be small important things like playing chess, reading a book, going on a run, going for a swim to the ocean, whatever it is that really can engage you in a way that keeps you in that activity.

This is what we call in psychology, flow, right?

That flow happens when you're engaged and immersed in something and that you kind of, everything else falls away, right?

You're not thinking about anything else. You are not being distracted by anything else.

We all have had times when we are in this idea of flow, right? We lose awareness of time. We stop caring how, what we look like or how others see us. We stop getting these thought interruptions that come into our mind and focus so much on that flow, that one thing that we're doing.

[34:04] Even in our worst of times we've had. You can imagine like being in the hospital, feeling all the physical symptoms and having a friend who comes over who never fails to make you laugh in that moment. In that particular moment, you were in the flow and and everything else went away, so find that for you.

For some people, it's knitting. For some people, it's spending time with people that they care about. But whatever that is, I think being able to engage in those type of activities can bring us a lot of meaning and be able to actually get you in a state of mind that is meaning-making in some ways.

Always ask yourself, how can you foster this type of experience? What activity could you bring that bring you new insights about who you are in the process?

[35:01] I've seen a lot of patients use this actually in the context of being hospitalized for transplant or CAR T. Those are the type of activities that can really distract us from sort of the everyday that's happening in the hospital.

But I've also seen it be used to kind of deal with, you know, the day-to-day struggles with chronic graft-versus-host disease.

[35:27] Our take-home points for today is really one, that the need to find meaning is a basic part of our humanity and being human. This is just natural.

Our sense of meaning can improve our quality of life and help us achieve a sense of wellness. I think the most important point, honestly, is that meaning-making is a life skill that you can strengthen. This is not something you're born with or not born with. This is not innate to you or your environment. 

This is something you can work on. Reflecting on your experiences allows you to be more than your symptoms and to focus on what is true.

[36:07] And lastly, in moving beyond unhelpful assumptions and expectations for life after transplant or CAR T, use helpful states of mind.

Some of these activities or strategies we shared for you may resonate with you more than others, but leverage those strategies and activities to help you engage in what matters to you most now.

[36:25] Dr. Traeger: Thank you, Areej, for sharing our take-home points. We hope you put those in your pocket for after you leave us. We wanted to end on a note from Wild Geese, which is a poem by Mary Oliver.So I'm just going to read this super briefly.

Whoever you are, no matter how lonely, the world offers itself to your imagination, calls to you like the wild geese, harsh and exciting, over and over, announcing your place in the family of things.

[36:56] Everyone here has a place in this world, in this earth, and we are excited for you to try some of the strategies that we've talked about today, or if you're already doing them to reinforce that practice.

We just wanted to give a shout out to some of the sources for this workshop. We mentioned that these are all evidence-based strategies that we're talking about. We've been talking about the workshop that we run. We're currently doing a national study of that workshop. If you're interested in participating with us, you can go to horizons-research.com to learn more.

[37:28] If you want to learn more about meaning-centered psychotherapy, we've listed a research article there that you can learn from. Logootherapy by Viktor Frankl.

That's been some of the inspiration for meaning-centered psychotherapy and is a really interesting read.

If you're interested in learning more about cognitive processing therapy, you can go to cptforptsd.com.

And then finally, all the things that Areej ended with, those positive psychology strategies, we've listed a link here to help you learn more about positive psychology.

[37:56] So we just wanted to thank you so much for being with us today and for joining us for taking your time out to be with us.

Okay, so we have some questions. Should we get started on questions?

Q&A

[38:06] Moderator: Our first question is, what do you recommend as far as sleep disturbances? Lack of sleep seems to make my physical symptoms worse and I struggle coping post-transplant. Any suggestions?

[38:20] Dr. El-Jawahri: Yeah, I can start with this.I think Dr. Traeger can also jump in. It's really important to just highlight, right, that we're talking about meaning-making is sort of a one aspect of coping.

It's really hard to meaning make and apply these strategies when you have a lack of sleep that's making you feel groggy and can't get through the day. I do think it's really important to talk about this.

Wellness can come in a lot of different forms. I've always said this, that for transplant recipients, you know, your best self, when you're not tired, when you're physically well, that's when you can apply your coping strategy the best, right?

Sometimes your best coping strategies fall out of the window when you're tired and fatigued and applying the concepts that we talk about would be really challenging.

I recently had a baby and so I feel like all of my coping skills kind of went out the window because of the sleep deprivation. I think I just want to highlight that it's important to really focus on sleep to help with energy fatigue, but also an ability to do the work that we just talked about, and think through two things.

[39:41] One is there's certainly behavioral aspects related to sleep that I will let Dr. Traeger kind of speak about in terms of seeking help with these, which I think really make a difference.

In terms of helping people both in the hospital setting, which is an impossible place to sleep, but also after the hospital setting.

Then the second piece is, I do think that early on, especially after transplant, sleep is so important that I often think it's worth a discussion with your clinician about pharmacological management of sleep, and leveraging medications to help.

A lot of patients have reservations about this because they worry they're going to get dependent on these medications.

But to be honest with you sometimes we need that especially early on in the context of an acute stress and there are strategies and ways to kind of wean those off but Lara do you want to talk a little bit about behavioral strategies that can help with sleep folks transplant

[40:34] Dr. Traeger: Yes, so just like Areej just saying I have to say our colleague Ashley Nelson also gave a talk on fatigue as part of this symposium. Her big message is always fatigue and just like sleep problems. They may be common, but that doesn't mean you have to live with them.

I wholeheartedly agree with the idea of bringing your sleep problems to your care providers and brainstorming together.

In addition to pharmacologic treatments, there is a ton of evidence supporting behavioral treatments for sleep. Cognitive behavioral therapy for insomnia is a real thing. It is really helpful.

Some of the strategies they use are behavioral, like what to do when you wake up in the middle of the night and you can't get back to sleep. Do you, you know, struggle and toss and turn? Do you get up and walk around and do something else?

It also focuses on the cognitive part of cognitive behavioral therapy, which is dealing with some of the catastrophizing thoughts that can happen when we haven't gotten a good night's sleep.

These strategies really work and I encourage you to seek them out. If you can't find a provider who's trained in this, there's a lot of self-help CBT programs that are free and available online.

[41:44] Moderator: Great, thank you so much.

Actually, from Dr. Nelson's presentation, one of the free resources she recommended was CBTI Coach, which is an app that's available for free. But you can hear more about that specifically if you listen to the recording of that session.

We have another question. Thank you for the very good referrals to other workshops and other resources.

But in particular, are there any other books that you might recommend on the topic?

[42:12] Dr. Traeger: I can suggest that some of the work that sort of the frame for meaning-centered psychotherapy comes from the work of Viktor Frankl, who was an author and he developed a therapy, but he was also a Holocaust survivor.

He wrote this book about his experiences and the experience of making meaning. His book is called Man's Search for Meaning. That's one book that tends to be helpful for people on this journey of meaning-making.

Then the work by Bill Breitbart and his team on their meaning-centered psychotherapy may also be helpful too as a place to start.

[42:47] Moderator: When you think about positive psychology and some of the important work that you presented here, something that we at BMT InfoNet hear a lot from different patients is about the burden of being expected to be positive all the time.

And could you speak a little bit to that?

[43:05] Dr. Traeger: I absolutely can.

That is absolutely true that there is a sense of burden to put on a happy face or feel positive. Or if you are going to have a negative mood, that could actually negatively impact your health. That can create a lot of stress around staying positive for all those reasons.

We really feel like what we're talking about here is making space for all the feelings. So all the thoughts and feelings you're having. I talked about being able to hold gratitude and resentment all at the same time. We can hold all different feelings.

Like right now, I can be really happy to be with you all and really afraid I'm going to mess up, right? I can actually have those two feelings at the same time. So we want to make space for all of this.

In positive psychology, this is more about finding meaningful states of mind that you enjoy being in. So this doesn't necessarily mean that you have to be happy, but it means you have to look for what are the states of mind you enjoy being in.

That could be, like Areej said, a sense of independence or a sense of peace or a sense of agency.

And so, you're going out there and using these positive psychology techniques to try to be in the states of mind that are helpful to you.

By doing that, we hope there's this bidirectional relationship between the mood that you're creating and your sense of well-being.

Areej, did you want to add anything to that?

[44:25] Dr. El-Jawahri: No, I'm so glad you asked because I do think we often see this pressure from those around patients, families, loved ones, to do that, you know, if you're positive, optimistic, you're going to beat this cancer.

Or if you are optimistic, you're going to get out of the hospital sooner. I do want to kind of highlight that that is definitely not helpful.

 So to Lara's point, I think, you know, it is hard. It creates an undue burden on patients to be in one particular space all the time. And that's challenging. Similarly for the caregivers, you know, it can go in either direction.

So certainly, I think when we think about positive psychology, that is definitely not what we're talking about here in terms of applying those skill set.

At the same time, I do think that we need to just recognize that. I don't know, how you feel about this, but some aspects of meaning-making are easier to do when also you've had a chance to process the experience.

Sometimes processing the experience is hard to do at a particular given point in time.

I don't know how you think from a psychological perspective on if you're thinking about the strategies we discussed, how you think about leveraging them through a transplant continuum or an illness course.

For example, like in my mind, the strategy around flow that we talked about, engaging in activities that kind of take you away from the world around you seems to be a really helpful strategy intuitively when you're going acutely through the transplant process and can help people really cope with those difficult things.

But might be harder when you're acutely having nausea, vomiting, diarrhea, be thinking about what has changed about my experience during transplant.

How do you think about those strategies and you apply them around the continuum?

It's more of less of a data, you know, obviously free zone, but do you feel like some strategies are better used in certain aspects related to the transplant continuum?

[46:48] Dr. Traeger: Yeah, I think like we said, every opportunity is a moment to find some meaning in it, and also we don't feel well many times.

So I always think of these positive psychology techniques as, for lack of a better word, just portable, right? You can have had so many different things happen in your day.

Just like Areej mentioned, that person that she worked with in her clinic who kept a gratitude journal, if you at the end of your day can find one thing that you were appreciated, it doesn't even have to be something you're grateful for, but just appreciation, like a bird landed on your windowsill and it was pretty or something really small that happened.

You're not rewriting that day and making it out to be a great day. You're allowing all of the experiences to still be there, but you're just also turning your lens to one thing that happened that you appreciated. By reliving that moment, you relive the feelings that you had during that moment. So, these portable experiences, they don't have to negate everything else going on.

[47:40] Moderator: We do have time for a couple more questions.

If anyone wants to put a few in the chat, or if the two doctors want to pose a question to the group for them to put in the chat for us to review.

But some really nice comments, and one that's very meaningful here about someone who wrote in that they are a few years post-transplant and have moderate chronic GVHD.

After a long, slow recovery, I felt like a boat drifting without an anchor when my transplant team told me I was cured. I was not totally cured emotionally and with the ongoing GVHD. I wish all transplant teams could work on survivorship as part of treatment.

[48:19] Dr. El-Jawahri: 

Yeah, so incredibly well said. I mean, gosh, I may take your sentence right here and put it on our survivorship website because I do think that is one of the most common things I hear from patients. 

I just want to normalize this for you, right? Like I think the idea that I think one of the hardest about transplant and to some extent CAR T is that this mismatch also between the expectation of normalcy and cure and life is getting back to where it was and the reality that happens for a lot of our patients that they may not go back to, hey, this is cured, everything is gone.

You know, in some ways in the cancer field, the focus on, well, you should be grateful that you've been cured. I mean, to Lara's point, we can hold those two things at the same time. We can feel grateful that we're cured and we can really be struggling emotionally with how hard this is.

I do think we need to do a better job in our survivorship programs, not to just address the physical and late effects, which I think we do a decent job as a field. But we do a disservice in addressing psychological well-being and psychological distress and just the emotional quality of this experience. So I appreciate your comment so much.

I'm just so grateful that you made it because I think this is exactly what we're talking about is the ability to leverage meaning-making as a way to cope with this is just one example of a way to help people move in the right direction.

Not the only way, but one way to help you get to a better emotional place with moderate chronic graft-versus-host disease and with everything that you've gone through with your illness.

[50:07] Dr. Traeger: I think I would just also add that the person who put in that comment, the bravery of being able to talk about how, what they're thinking and feeling and sharing it with all of us here.

I would say that if anyone else on this call hears that comment and can relate to that comment, consider how it makes you feel to understand that someone else out there may feel similar or same to you.

So consider whether that's an experience you want to have again, that you, you know, if you haven't ever met somebody who is a survivor of what you've been through, that it might be helpful to connect with others who've been through this or something similar.

[50:40] Moderator: What a beautiful moment to end on in just reminding everyone that we are all here for them as an organization, you two as providers, and our goal is really that no one feels alone.

So whatever resources we can offer as BMT InfoNet, We are thrilled to, and we are so grateful to both Dr. El-Jawahri and Dr. Traeger, also on behalf of our partners and Sanofi for sponsoring this talk.

We thank you to the audience for engaging and for putting in these really important questions and comments.

Thank you.