The Scars You Can’t See Are the Hardest to Heal: Coping with the Impact of Graft versus Host Disease

Learn how Acceptance and Commitment Therapy can improve mental well-being.

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The Scars You Can’t See are the Hardest to Heal

Wednesday, August 25, 2021

Presenters: Hillary Howrey, PhD and Megan McMahon, PsyD

Presentation is 43 minutes long with 29 minutes of Q & A.

Support provided by Pharmacyclics, an AbbVie company and Janssen Biotech; Syndax; Kadmon Corporation; and Incyte.

Summary:  Anxiety and depression are common among cancer patients and survivors. Acceptance and commitment therapy is an effective tool for these problems. This presentation discusses the mental health challenges of transplant and GVHD patients and how this therapy can help them.


  • Anxiety or depression over lingering symptoms, cancer recurrence, and graft-versus-host-disease (GVHD) can persist or even increase long after a transplant. The lack of regular contact with medical providers can make these issues even more troubling.
  • Transplant recipients with post-transplant distress may not seek mental health care for a variety of reasons. They may feel stigmatized, minimize their own anxiety, or not wish to be a burden on others.
  • Acceptance and commitment therapy (ACT) can make our thoughts, emotions, and behaviors more flexible and improve our quality of life even with ongoing medical challenges like GVHD.

Key Points:

(00:06:09) The mind and body are intimately connected and interactive. Our physical experiences affect our emotional responses and vice versa.

(00:10:24) Caregivers and transplant recipients face similar issues with anxiety and depression. The frequency of these issues is sometimes greater in caregivers than in patients.

(00:11:09) Proactive coping skills can prevent the long-term impacts of anxiety and depression.

(00:16:29) Fighting our thoughts and feelings can make them stronger. Accepting what cannot be changed and flexibly moving on is a healthier response.

(00:19:21) Actively choosing to accept unpleasant experiences is healthier than passive avoidance.

(00:20:28) Cognitive diffusion creates distance from our thoughts and promotes more flexible responses to them.

(00:27:16) Mindful awareness of the moment is difficult in a multitasking world, but focusing on the here and now can free us from our anxieties.

(00:33:31) Following our core values rather other people’s expectations is a core principle of ACT.

(00:34:59) Psychologically flexible people return to their values despite setbacks and distractions. Being inflexible can create hopelessness, demoralization and grief.

(00:38:55) Actions that are aligned with our values make us more flexible in meeting our needs; flexibility is at the heart of healthy, emotional functioning.

Transcription of Presentation:

(00:00:00) [Sue Stewart]               Introduction and acknowledgement of sponsors. Hello. My name is Sue Stewart. I'm the executive director of Blood & Marrow Transplant Information Network. Our organization is designed to help patients before, during and after transplant, and this webinar is part of our series of helpful programs to help you deal with some of the stress that you deal with before, during and after transplant.

I'd like to thank the following companies whose support in part made this webinar possible: Pharmacyclics, an AbbVie company and Janssen Biotech; Syndax; Kadmon Corporation; and Incyte. Thank you all for making this possible.

(00:00:41) [Sue Stewart]               Introduction of speakers.  And it's now my pleasure to introduce to you today's speakers, Dr. Hillary Howrey and Dr. Megan McMahon. Dr. Howrey is a licensed clinical psychologist at Helen F. Graham Cancer Center and Research Institute in Newark, Delaware. She's experienced in using a variety of evidence-based treatments that are tailored to meet the needs of individuals impacted by cancer, such as acceptance and commitment therapy, cognitive behavioral therapy, meaning centered and existential therapy, motivational interviewing and biofeedback.

Dr. Howrey specializes in hematologic oncology and she's a member of the CAR T and bone marrow/stem cell transplant interdisciplinary team at the Helen F. Graham Cancer Center and Research Institute. There she collaborates with patients and families before, during and after transplant or CAR T-cell therapy to improve health outcomes and quality of life. Her research interests include stress, coping, resilience, and the impact of social support on wellbeing and patients with chronic health conditions.

She's involved in training students, residents and fellows in psycho-oncology, is an active member of the American Psychological Association and serves on the executive board of the Delaware Psychological Association.

Dr. Megan McMahon has a breadth of experience in working with cancer patients and their caregivers, including inpatient and outpatient work with transplant patients impacted by GVHD. She also has experience with dialectical behavior therapy, addiction medicine, and providing psychological services to children and families. She's involved in psychological oncology research and the training of psychology and psychiatry trainees.

Dr. McMahon completed her doctoral training La Salle University in Philadelphia where she gained extensive training in trauma, health psychology and psycho-oncology. Her previous clinical work includes psycho-oncology at the Helen F. Graham Cancer Center at Christiana Care Hospital, consultant and liaison psychology at Cooper University Hospital, and a psychology internship at Christiana Care in psycho-oncology and behavioral health consultation in primary care. Please join me in welcoming doctors Howrey and Dr. McMahon. Dr. Howrey?

(00:03:13) [Dr. Hillary Howrey]      Background of speakers. Thank you, Sue. Hi. I'm Hillary Howrey. And as you said, I'm a cancer psychologist working at the Helen F. Graham Cancer Center and Research Institute in Newark, Delaware. Today I have one of my colleagues, Megan with me and we're going to discuss some strategies for coping with the emotional impact of graft-versus-host disease. All of the strategies that we discuss today are also applicable to other challenging life events or caregiving for a loved one who's experiencing health challenges. So I want to make sure that all of you can keep that in mind as we move forward.

We would also like to thank BMT InfoNet for arranging this opportunity to speak with everyone today about this important topic.

Megan and I belong to a large interdisciplinary team here at Helen Graham and each of the members bring a slightly different expertise and perspective. In general, psychosocial oncology is the study of emotional reactions to cancer diagnosis, treatment, and survivorship. Our team, and other teams like ours, that exist at other cancer centers often focus on various factors that can improve overall health and coping with cancer or transplant.

Some of the areas that we can assist with are improving communication with the healthcare team or personal caregivers in the context of cancer, providing guidance and skills to improve health behaviors, and cancer prevention, or assisting patients in coping with emotional reactions or normal distress related to different health conditions. We can also provide guidance and education to patients and caregivers about how to manage behaviors or symptoms that might interfere with treatment or recovery from treatment.

(00:05:13) [Dr. Hillary Howrey]  Overview of talk. Today, we're going to discuss some of the skills that can be used to manage the emotional impact of graft-versus-host disease. While we'll focus many of the examples that we have on graft-versus-host disease, all of the strategies that we discussed today can also be applied to distress related to other challenging life situations or events. We hope that by the end of today's talk you'll understand the key features of acceptance and commitment therapy and how it differs from other approaches to managing distress.

We'll also be providing a few opportunities for you to apply some of these acceptance and commitment therapy skills to your own personal situation or experience. And at the end of the talk, we'll also provide some additional psychosocial resources that are available to help manage the emotional impact of cancer, cancer caregiving, and transplant.

(00:06:09) [Dr. Hillary Howrey] The mind and body are intimately connected and interactive. Since you're here for this particular talk, you may already recognize that your mind and body are intricately connected. Each of our experiences can impact us differently depending on how our mind and body are interacting. That is to say that our physical experiences often impact our emotional experiences just as our emotional frame of mind or frame of reference can impact how we experience our physical experiences or symptoms.

For example, you might've noticed that if you've had an intensely stressful situation at work or school, that this has impacted your physical health and made you more susceptible to illness. However, when we tend to do a better job of managing stress, we seem to have a more robust defense system against illness.

Another example that many of us may be familiar with is when children go to the dentist, and watch their favorite movie or TV show before having their appointments, they're often more able to tolerate physical discomfort or new situations because watching the movie puts them in a good mood or a better frame of mind. So today we're going to explore this relationship a bit further with the goal of you being able to use this relationship to your advantage in managing unpleasant side effects or symptoms.

(00:07:30) [Dr. Hillary Howrey] Cancer and its treatment pose physical and emotional challenges. Great. So I'm going to dive in here and before we get to interventions and experiential activities, which we hope to spend the majority of our time doing, wanted to talk about this connection with psychosocial burden throughout this cancer journey and this transplant journey. So just taking a moment to recognize that starting with the diagnosis of cancer, moving to treatment planning, going through transplant, also having other side effects that can happen at any point here, poor sleep, fatigue, maybe questions about our sexuality or fertility, adjusting to a new body or a new normal and seeming to have to continually do that, this can lead to distress like depression and anxiety.

(00:08:21) [Dr. Hillary Howrey] Worry, anxiety and depression are common among cancer patients. Also want to normalize that having moments of low mood and worry and anxiety are very common. If we see them persist for a long time, though, and they impact our day to day [life], that's where things like major depressive disorder or an anxiety disorder like health illness anxiety, or generalized anxiety can come into play.

So the rates vary for transplant patients and the rates of depression and anxiety, but overall, we're seeing ranges of depression up to about a third of patients. So depression ranging from 5 to 30% and anxiety, 10 to 30%. And some studies suggest that depression rates tend to increase over time after transplant, whereas anxiety can trend downward after transplant.

(00:09:08) [Dr. Hillary Howrey] Anxiety or depression over symptoms, cancer recurrence, and graft-vs.-host-disease (GVHD) can persist long after transplant. In some ways, this makes sense, right? We get over this big hurdle of transplant and sometimes our anxiety can lessen at that point, but it's very variable, extremely variable. We can see shortly about the fear of cancer recurrence, of course, increasing our worry and concern. Also finding this new normal and managing symptoms of GVHD, for example, increasing our anxiety.

We just know that it's very prevalent with transplant patients even after active treatment. So all these things culminate and impact our quality of life. Also our ability to function physically and overall survivorship concerns, again, highlighting that connection between mind and body that Hillary talked about.

(00:09:54) And for this slide in summary, we see depression and anxiety rates continuing way past active treatment or just after transplant. So, there's not a lot of great studies or an abundance of studies anyway about depression and anxiety rates for transplant patients more long-term. But in this study, for example, cancer survivors versus people who do not have cancer were still seeing a fair gap in anxiety and depression two years out.

(00:10:24) [Dr. Hillary Howrey]  Caregivers face similar issues with anxiety and depression. And also I wanted to take a nod here to caregivers. So many studies find that there's not actually much difference between patient and caregiver distress. Those depression and anxiety rates are pretty similar and some suggest even exceed distress for caregivers over patients.

So this can be due to a lot of different reasons. There's a trend towards more outpatient treatment shortly post-transplant so that can add some logistical burden to caregivers like transportation, but also the day to day. So again, want to highlight that this presentation and this information is for patients, but also caregivers, as I'm sure some of you are on the call, because there is impact that goes beyond just the patients and more the whole family or caregivers as well.

(00:11:09) [Dr. Hillary Howrey]  Proactive coping skills can prevent long-term impacts. Also the reason that we're talking about the importance of this connection between mind and body and the impact of depression and anxiety is the importance of actively coping as opposed to waiting. As we're seeing, the depression and anxiety rates, and I'm sure there are other studies that we could do now and for the future, that could point out even more of a discrepancy between transplant patients and maybe non cancer patients and what two years out looks like. So we want to be proactive in protecting our mental health because we know that there are long-term impacts, if not.

(00:11:48) [Dr. Hillary Howrey] Fears and anxiety may actually increase after active treatment ends. So, also, as this image on the bottom right suggests, fear of cancer recurrence can be the elephant in the room for many patients and families. And here we're talking about this fear or worry that cancer can return or progress even if we've already gone through active treatment. It's common for patients to feel a sense of control when they're in active treatment, maybe seeing their providers more often, feel like they're being monitored more closely, and as time goes on, we can maybe see these providers less, and even symptoms of GVHD, for example, can be triggers for this fear.

So we might often worry that these small aches and pains or these larger chronic physical concerns with GVHD could be indicative of disease progression or relapse. So, this is going to impact our mental health, right? It can spike our depression and anxiety, understandably, and also have an impact beyond just quality of life, which is a huge piece here. But having less satisfaction with our healthcare overall and even utilizing our healthcare more. So in an emergency or urgent situation because we're maybe wanting to get a scan and confirm that this is not a progression of disease, for example.

(00:13:06) [Dr. Hillary Howrey]  Patients with post-transplant distress may not seek mental health care or recognize the need for it. And also despite these high rates of distress that we're talking about here, less than half of individuals with distress seek mental health care. And this can be for a lot of reasons. We know that there is a stigma with mental health that has been around and continues to stay around. Also minimizing our own distress, let's not burden those around us with our problems. Often we hear that with caregivers, right? Not wanting to add burden to the cancer patient or cancer survivor. There are a lot of possibilities here.

Also let's take a moment to realize too, throughout the transplant process, we're focused on these milestones, but once we make it through transplant, I should be done then I'm going to focus on the 90 days after and not even think necessarily about how I'm doing emotionally. I'm just trying to get through these milestones. And I think we're not focusing so much attention on our mental health and how this is impacting us.

And unfortunately, as healthcare providers, as well, maybe we're not checking in as much as we should or could be as well. So of course this is playing a role. And in general, we don't tend to care for our mental health the way we do for our physical health, but we know that this comes at a cost.

So I want to take a minute and kind of give an overview of some of those potential common concerns that might come up in the context of recovery from any type of traumatic illness, but especially major things like transplant. Obviously everyone brings their own history and life experience to transplant, but some of the reactions to increased stress of a major medical procedure like transplant or graft-versus-host disease can cause kind of a new onset or worsening of symptoms like anxiety or panic, also depressive symptoms, post-traumatic symptoms or a new or worsening substance use disorder.

(00:15:07) [Dr. Hillary Howrey]  Medications and various psychotherapies can improve our mental health. There' are a number of different treatments that can be used to treat these symptoms either individually or in combination with other approaches. Certainly medications that can help to manage anxiety or improve mood are one option. These can also be used in combination with different psychotherapies or counseling approaches. Just as an example, cognitive behavioral therapy focuses primarily on changing thoughts and behaviors to improve symptoms.

There are also other approaches such as mindfulness-based skills, narrative therapies that focus on one story and group support interventions that focus on peer support or learning new strategies from and with others who have shared similar experiences.

(00:15:55) [Dr. Hillary Howrey]  Acceptance and commitment therapy (ACT) helps make our thoughts, emotions and behaviors more flexible and fulfilling. Acceptance and commitment therapy, what we're here to talk about today, is a somewhat newer approach that focuses less on specific disorders or symptoms, and, instead, on helping individuals have as fulfilling a life as possible under whatever circumstances they might find themselves in. ACT is really more of a framework for thinking about the relationship between our thoughts, emotions, and behaviors, with the goal of making our responses to life events more flexible.

(00:16:29) [Dr. Hillary Howrey]  Fighting our thoughts and feelings can make them stronger. As an exercise for the next 10 seconds, try not to think of a pink elephant. [10 second pause] So ,I'm curious if when I said that, the first thing that came to mind was a pink elephant. It really, this exercise illustrates the theoretical basis underlying ACT, which is that pain and discomfort are a natural part of the human condition and the more we fight our thoughts and feelings, the more that they can chase and control us. So as you did that, it seems, as you focused on the pink elephant, it seems likely that the more you tried to avoid thinking about it, the more you actually thought of it.

(00:17:32) [Dr. Hillary Howrey]  Accepting what cannot be changed and flexibly moving on is a healthier response. When we're confronted with a variety of different symptoms and life experiences, it's important that we're able to move from one to the next without spending too much time on any one experience that's not helping us to move forward. ACT assumes that this type of psychological flexibility, or flexibility in responding, is at the heart of healthy, emotional functioning. Working towards greater psychological flexibility is an active process in which we accept that which is, and what cannot be changed, commit to moving forward in a manner that is in accordance with our personal values and continually take action. The overall goal is to be fully present and open to our experiences so that we can take actions that are guided by our values.

According to ACT, the way that we can work towards increasing flexibility is through these principles. We're going to review each of these principles in more detail for the remainder of the presentation. While we do that, we're also going to provide some experiential exercises to illustrate how these might be applied to your own experience.

(00:18:54) [Dr. Megan McMahon]      The importance of acceptance. Great. So first we're going to start with the left hand side here with acceptance. And again, the goal of these core principles is to increase this flexibility that ACT discusses and also remembering that this is a framework and perspective, right? The goal of today is hopefully we're going to get a few nuggets of information or a few exercises that we think we can carry out in our own lives that might be helpful for us. That's the goal.

(00:19:21) [Dr. Megan McMahon]      Actively choosing to accept unpleasant experiences is healthier than passive avoidance. So if we just focus on acceptance first, the key point here is that it's an active choice to allow unpleasant experiences to exist. So naturally as humans, we want to avoid distress and not allow ourselves to feel these uncomfortable emotions. So maybe using phrases like it is what it is", or "it could be so much worse", "Mary Beth down the street had this kind of cancer and this treatment, and it was just really bad". And these are more passive and self-defeating in nature, which is not what this core principle is talking about.

That would be more inflexibility that ACT refers to, pushing off our emotions or trying to quickly move to a more feel good emotion because, of course, we want to feel good, right? It's hard to be in these uncomfortable emotions. And as Hillary mentioned before, we know that avoiding pain is ineffective and ACT says that this often leads to more suffering and also invalidation of our lived experience. So acceptance here means sitting in the feelings, whether it is good, bad, or neutral.

(00:20:28) [Dr. Megan McMahon]      Cognitive diffusion creates distance from our thoughts and promotes more flexible responses to them. Now we're focusing on the right hand side here for cognitive diffusion. This is a big phrase in ACT. What it boils down to is creating some distance from our thoughts. I'm sure we've all had moments of "being in our own heads", or having people in our lives reflect that we're in our own heads if we express our thoughts and feelings at times. And this idea of diffusion is creating distance from our thoughts so we're not so closely tied to them.

So maybe we'd have the thought, "I'm going to live in this fear or discomfort forever." And these are tough thoughts. And often if we tell ourselves this over and over again, it becomes more fused, all right? And we start to believe it more and more, it becomes the bigger elephant in the room. So we believe this is likely, of course, if we keep thinking about it so much, we believe it to be true and it's going to impact our emotions. For a lot of us, that can make us feel more hopeful.

And cognitive diffusion, this principle is recognizing and noticing that the thoughts are different from actually living with this pain or discomfort forever. So it allows some flexibility for other options or considerations if we allow a little bit of space. And as the last bullet points out, thoughts do not necessarily equal truth. And if we create that distance, we can move towards believing that more and more.

(00:21:56) [Dr. Megan McMahon]      Visual and sensory imagery can help us accept but then let go of thoughts and feelings. So these are some hard concepts to understand, especially because they're probably new to many of you. And that's why sometimes engaging in a visual imagery exercise can help us understand them in a deeper way. So visual imagery, in short, involves the sense of having pictures in our mind. It can also help us focus on one thing at a time, which we'll talk about in more detail with the next principle.

So let's ignore what's on the screen for a second, and if you feel comfortable, close your eyes for a moment and just imagine your favorite vacation or destination you've ever been to. Imagine the colors that you see, or what you see around you in this setting. Maybe the noises that you hear, how your body feels in this place and soak it in for a moment. This, in and of itself, is visual imagery. It's creating these pictures in our mind of this beach vacation or middle of a field or in the mountains, wherever that is for you. I know for me I would love to get back to Europe after COVID happens, right? So my mind goes there, so that's my visual imagery when I think of this.

(00:23:22) [Dr. Megan McMahon]      An experiential exercise illustrates this process. So to bring us back here to this slide, we're going to do another experiential exercise if you'd be willing to give this a go. So just for a minute now, you can either focus on the image on the screen or close your eyes, if you feel comfortable, and imagine a stream or creek that's familiar to you. Imagine this in your head. Imagine being there and feeling the ground beneath you, the sounds of the water flowing past and the way that the stream looks as you watch it.

Imagine that there are leaves from trees of all different shapes, sizes and colors floating past on the stream and you're just watching these float on the stream. This is all you need to do for the time being. Start to become aware of your thoughts, your feelings, or other sensations. And each time you notice the thought, feeling or sensation, imagine placing it on a leaf and letting it float down the stream.

Do this regardless of whether the thoughts, feelings or sensations are positive or negative, pleasurable or painful. Even if they're the most wonderful thoughts, place them on a leaf and let them float by. If your thoughts stop, just watch the stream, sooner or later, your thoughts will start up again. Allow the stream to flow at its own rate and notice any urges to speed up or slow down the stream and let these be on leaves as well. Let the stream flow how it will.

(00:25:32) [Dr. Megan McMahon]      The “leaves on the stream” exercise trains us to let thoughts and feelings simply float by. exercise So if you can join me back in this virtual space here. So this is an exercise called leaves on the stream. And in short, we're creating the diffusion from our thoughts, right? By placing them on the leaves. An acceptance in the sense that we're putting these thoughts down regardless of if they're positive, right? Even the most wonderful thoughts, or if they're more negative or painful or just neutral.

(00:26:09) [Dr. Megan McMahon]      Gaining this distance from our thoughts give us a sense of control. So this exercise can give us a sense of control, right? And creating this distance from our thoughts and finding a way to picture this diffusion in our minds. And a way that we can use this, just as a quick example, maybe if we think of yesterday, we had a tough day. Maybe we went to an appointment or two, maybe we found ourselves being pulled in different directions by different roles and responsibilities or being overwhelmed by the symptoms we're experiencing, maybe all of the above.

When we're getting ready to wind down for bed, for example, that could be a helpful time to pull this out and use it. I know some of us have had the experience of our mind racing or feeling like there's all these thoughts in our head that like to just come out and swarm at night. So this can be a way to help create that diffusion from our thoughts and hopefully give us that space that we need in order to go to bed, right? And unwind for the day and create that distance from our thoughts.

(00:27:16) [Dr. Megan McMahon]      Such mindful awareness of the moment is difficult in a multitasking world. So moving on to the next principle, if you had a difficult time engaging with that last exercise, you are definitely human. It is really hard to be present and mindful because as humans, we're multitaskers. Let's also acknowledge that living in a virtual world, it's easy to fall into patterns of being mindless in a work meeting or a call for example. I'm sure some of you are also multitasking right now on this call. Maybe you're eating lunch and looking at this presentation or you're balancing a lot of other things while trying to keep your mind focused on here from time to time. And that's normal, right? This principle of being present and mindful is focusing on this present moment. So not focusing on events before or after this, what you're having for dinner later or the work meeting you had before this.

(00:28:07) [Dr. Megan McMahon]      Focusing on the here and now can free us from our anxieties. And again, this is hard because we have fear about the next set of maybe lab work or lab work numbers or different things that are coming up with our treatment or our monitoring, and we're worried about the future, right? So flexibility here is finding ways to engage in the here and now and continually practicing this and bringing ourselves back to it because our mind wanders as humans. Even something as seemingly simple as focusing on our breaths, for example, can be hard to do. We often don't slow down enough to allow ourselves to do this.

(00:28:42) [Dr. Megan McMahon]      “Triangle breathing” is another useful exercise to stay in the present moment. So I'm hoping you'll engage with me virtually here in this next experiential exercise just for the next under a minute and try to fully engage in this moment and follow the prompts that I'll help walk you through. So as you can see here on the right, there's a triangle. So we call this triangle breathing. If you can read the slide, it says to breathe in for three, hold for three and breathe out for three. So I'll help us walk through this a couple of times.

So if you want to close your eyes, you can feel free to. So breathing in any way that feels comfortable for you for 1, 2, 3, hold it, 2, 3, and breathe out, 2, 3. Let's try that a few more times. So breathe in 2, 3, hold it, 2, 3, breathe out, 2, 3. Let's do this twice more. So breathe in, 2, 3, hold it, 2, 3, breathe out, 2, 3. So again, if you notice your thoughts wandering, congratulations, you are human, it's going to happen.

(00:29:55) [Dr. Megan McMahon]      Being mindful can reduce distress and actually bring joy. And the goal is that we continually try to stay in the present moment and bring our mind back to the task at hand when it drifts. The goal here is not just to maybe limit distress that we're feeling as a whole, but it also can bring more joy to our lives. Maybe we've had times where we've been to a positive event or had a good experience with a friend but we feel like we couldn't be in the moment because our mind was wandering to all these things we had later in the day, what happened before then. So it takes us out of that joy maybe we could experience in the here and now. So this is not just for limiting distress, right? But sometimes even noticing that distress and, or finding more joy than we would otherwise.

(00:30:36) [Dr. Megan McMahon]      Mindfulness is the antithesis of distraction; balancing the need for each is important.  And also sometimes this idea of being mindful, that is the antithesis, if you will, of distraction. So maybe we've been encouraged throughout the treatment journey, during transplant, post-transplant to distract ourselves, right? And that's been encouraged. And this is really helpful for intense emotions and to lessen the intensity of usually negative emotion. But we don't want to overuse it, right? We want to pick and choose when we're using distraction in moments of intense emotion and when we're going to focus on mindfulness and even noticing more distressing thoughts that we're having, right? So it's kind of trying to find the balance between the two, which can be really hard at times.

(00:31:21) [Dr. Megan McMahon]      Another principle involves seeing details in the broader context of our life so the details don’t dominate our experience.  So moving on to this next core principle, hopefully you're all following along with me. If not, maybe the sports fans in the virtual room will enjoy this metaphor that I have. So for this principle, I'm going to start with a metaphor because sometimes it's easier to understand it in that way. So this is a bird's eye view of Lincoln Financial Stadium in Philadelphia. So pun intended there for all you Eagles football fans near or far from Philadelphia. The stadium's in the backyard for me and for Hillary, Dr. Howrey.

So this is the stadium as a whole, nearly a whole, you can almost see the whole thing. So sometimes on game day, it's easy to get caught up in the details. So maybe it's the field, the people in the stands and the players on the field to the smaller details like the souvenir cups or the peanut shells on the ground. So similarly, for this context here is the sum of who we are as humans. So we can very easily get caught up in the self as content as ACT discusses, meaning that we focus on our current skin rash, diarrhea, other side effects or lab numbers from our appointment this morning.

This is a reminder that total context is what matters. So looking at your whole life with a bird's eye view, not just the disease, the GVHD, the symptoms that we're currently struggling with as part of GVHD or otherwise, and it's easy to get caught up in the day-to-day or the content, but more flexibility here is taking a moment to consider the "arena of your life" for a fuller picture. And in doing this, it can also decrease the intensity maybe of our emotions or distress.

As the last bullet point says here, the self is the experiencer of life versus the stories we tell about our lives. Sometimes we can get really caught up in those smaller details in the stories and that can impact our mental health as well. So just taking more of a bird's eye view.

(00:33:31) [Dr. Hillary Howrey]      Following our core values rather other people’s expectations is another core principle of ACT. than So I'm going to review the next couple of core principles. The next one is values, which are the core components of ourselves that help to give meaning and direction to our lives. They often function like a map for determining which path we choose.

Values are personal to you and they're freely chosen, they're something that can change over time. They're something that we're always in pursuit of and they're not permanently achieved as an end goal or an end point. A good question to ask yourself about whether something is a core value of yours is "if no one knew I was doing this, would it still be important to me"?

So often I think we get caught up in doing the things that we're expected to do, doing the things that others want us to do or want for us. But if we step back and actually think about "would I still feel passionately about doing this thing if no one else on the planet knew that I was doing it" and the answer to that question is yes, then it's probably something that's worth pursuing.

(00:34:43) [Dr. Hillary Howrey]      Committed action means aligning one’s values and behaviors. Committed action is looking at your values and making a commitment to change your behaviors in order to align with your values. So this is really about walking the walk and bringing your values to life.

(00:34:59) [Dr. Hillary Howrey]      Psychologically flexible people return to their values despite setbacks and distractions. It's really pretty rare that everyone can live according to a values committed framework all the time, but the key is that a psychologically flexible individual or someone who can use these core components will be able to return to these values, despite setbacks, and that the process of continually returning to and refining values will be in and of itself intrinsically reinforcing. Because at the end of the day, if you're getting the things that are most meaningful to you, often that is the reward.

(00:35:34) [Dr. Hillary Howrey]      Being inflexible can create hopelessness, demoralization and grief. Some of the things are warning signs that can occur when we're being psychologically inflexible can include a loss of hope and meaning or demoralization. If there's values that have given us meaning in the past, we can work to find ways to act in service to values within our current limitations. Sometimes that requires us to be rather creative but there's often a way to achieve pretty much any value given a limitation. Another thing that can occur if we're being inflexible is a sense of grief. That's the price of living a values driven life because avoidance of that particular pain would require that we don't have anything in our life that's worth losing.

But then again, not taking that risk means that you're not necessarily getting the rewards of living a values driven life. Particularly in the context of medical illness, there's often avoidance of activities in order to avoid negative consequences. Though in that avoidance, we may also miss out on the positive activities and experiences that we used to get as a result.

(00:37:05) [Dr. Hillary Howrey]      A “values compass” can help us identify and clarify our values. This figure is a values compass, which is one of the tools that we commonly use in ACT to help explore personal values.

Some of the questions that we might ask when we're exploring our values are what really matters to you deep in your heart? What do you want to do with your time on this planet? What sort of person do you want to be and what personal strengths or qualities do you want to develop?

(00:37:32) [Dr. Hillary Howrey]      The weight or priority of our values can also vary over time. In the context of ACT, we also explore the weight or the priority of those values. For example, you may notice when you look at this compass that you more heavily relate to one value or set of values than the other values shown here.

It's pretty common for us to be more heavily invested in one side of the compass than the other. And in fact if you think about someone who focuses very heavily on relationships, you may very well be heavily weighted on the right side of the compass as opposed to those things that are across from it.

(00:38:06) [Dr. Hillary Howrey]      Medical illness or transplant can shift our priorities; recovery may involve reestablishing previously valued activities. Often in the context of medical illness or transplant, you may have had to prioritize certain values over others because of physical or practical limitations. Often, individuals who have gone through transplant can find themselves having to actively work at pursuing previously valued activities during their recovery period to compensate for this.

(00:38:31) [Dr. Hillary Howrey]      COVID has also shifted our value priorities. Another example is that in the context of COVID, a lot of our valued behaviors may have shifted because of things that we haven't been able to do. This is a pretty common experience because the world has had to shift how we connect with our values, given the limitations of our current environment.

(00:38:55) [Dr. Hillary Howrey]      Thinking about actions that are aligned with our values and then pursuing those actions makes us more flexible in meeting our needs. that After looking at the compass on the last slide, take a minute and think about one discreet action that you could take to move a little bit closer to a value that you identified as an area for growth. This could be taking a minute just to write something down on your calendar, make sure you get to the gym this week, or make sure you call your aunt or talk to your best friend who's been asking about you but you haven't had a chance to respond to. Making time and finding opportunities to connect with our values more regularly can help us to be more flexible and more responsive to our own needs.

(00:39:40) [Dr. Hillary Howrey]      Flexibility is at the heart of healthy, emotional functioning. In summary, flexibly applying these principles to your own experience can help to improve our ability to better cope with the situations that life throws at us. This flexibility is really at the heart of healthy, emotional functioning. Often the intense, physical and emotional experiences that we experience during transplant or other significant medical conditions can grab our attention, distract us from the things that are most important to us at our core and lead us to rigidly responding in ways that are not necessarily as helpful as being able to be flexible and use all of these different components that we've discussed today when we're responding to really intense situations.

(00:40:34) [Dr. Hillary Howrey]      A variety of support resources are available to help in implementing these principles. So as we discussed before, I have a list of different support resources here. And I'm going to preface all of this with, if you have a treatment team that you're already connected with, you probably want to check with them and see if they have someone on staff. It could be a psychologist, a social worker, a nurse practitioner or someone who has some training in working with the emotional responses of people who have gone through transplant or cancer more generally.

They may also have some community referral options or different treatment options available elsewhere in your medical center. But these are some general support resources that are available on the internet and by phone that can help different people cope with different things related to both transplant, cancer or cancer caregiving.

(00:41:28) So obviously BMT InfoNet has a great wealth of resources. I've listed them out here but you can certainly explore them, take a few minutes and explore them more on BMT InfoNet's website. One thing I'd like to highlight is the new mental health provider directory which is, to my understanding, continuously updated and has a lot of great resources for connecting with a provider in your area.

(00:41:57) Be The Match obviously is a good resource. They also offer free counseling services. Leukemia Lymphoma Society is another.

(00:42:06) Imerman Angels is maybe a slightly lesser known group, but they do provide peer and caregiver one-on-one support and mentorship programs. So you can go to their website, get signed up to either become a peer support person or to receive peer support from someone who has gone through something that is very similar to your own experience. They also have a great, pretty comprehensive list of support resources on their website that's worth checking out.

(00:42:36) And lastly, if you're not familiar with Cancer Support Community, Gilda's Club or the Wellness Community, it's called Different Things in Different Places. They also have a support helpline. They often are offering virtual or in-person support groups and you can get more information about what's available near you by going to their website.

(00:43:03) [Sue Stewart]               Q & A. So thank you so much, Dr. Howrey and Dr. McMahon, that was a great presentation. It has generated a lot of questions and so we will get to those in a moment. Just as a reminder, if you do have a question that you want to pose to either of the doctors, please type it in the chat box and we'll get to as many as possible.

And I'll note that we have a couple of questions in there that are questions about medical treatments for various aspects of GVHD. These are not the speakers to address those questions to, but if you want to email us at, we can connect you with some resources that would be helpful for that.

(00:43:49) [Sue Stewart]               So the first question is what is the best way to answer the question, "so how are you doing when someone asks? You want to shout you're struggling with GVHD, but really all they want to know is how your cancer journey is going. GVHD is harder than treatment and transplant itself in my opinion."

(00:44:15) [Dr. Hillary Howrey]       So I can take that. I think one of the challenging things about this is there's probably no one blanket response. I think it depends heavily on your own personal boundaries as well as what your relationship with that person is and how helpful you think it would be to share what you're experiencing currently with that person. So for example, if it's just an acquaintance or someone that you don't know that well, probably simply sharing that you're kind of through one phase of treatment, but you're in the next or something along those lines, sort of equally vague might be the best approach if you want to share that basically you're through the active part of your cancer treatment, but you continue onwards in dealing with other issues.

If it's someone that you know better and you feel like you could be more open and honest with and have kind of a good conversation, I think it's okay to be honest and to be authentic and to reflect your own personal set of values in your response. So it's highly dependent on the context and the situation, but I think in general authenticity is often a good response if you feel comfortable doing that.

(00:45:36) [Sue Stewart]       So the next question is a little more general, but I think it probably is something we've all experienced. What causes nightmares and how do you prevent having them from time to time? Dr. Howrey?

(00:45:58) [Dr. Hillary Howrey]     So again, there's probably no one... there's no one response to that question. Just some of the medications that are given to folks that are either going through transplant or still within the initial 3 to 6 to 12 months after transplant can actually kind of rev up nightmares, That's a pretty commonly known thing, particularly for some of the antifungal medications or some of the anti-rejection medications. Some people are more sensitive to those than others. And so sometimes that can take people by surprise, but it's a pretty common response.

Now, if we're talking about someone who is many months or well beyond their active treatment following transplant, that could be something totally different and certainly it's highly dependent on what's going on in that person's life, their personal background. But if it's distressing, I would certainly suggest getting that evaluated by a mental health professional, or even talking to your primary care doctor about it because I think certainly it could represent some trauma, there could be increased stress or sometimes nightmares have absolutely no meaning at all and they're just kind of ridiculous.

But there are treatments available from mental health professionals that can help to mitigate, or reduce the intensity of unpleasant nightmares. Again, it depends why you're having them, but someone who's trained in that can really help to better understand that and get a better handle on it.

Certainly you could talk to your medical oncologist about it. If it's possible, it might be a medication that you're taking or a new medication that's been added. A psychologist or most mental health professionals have some training in being able to identify whether something is related to trauma or whether it's maybe more of an acute stressor. And then also there are specific mental health interventions, psychotherapies like the one that we discussed today that can be used in a targeted way to help address the nightmares.

(00:48:28) [Sue Stewart]      All right. The next question is from someone who actually hasn't gotten the transplant and I think from the gist of the question, she's sort of asking me how to deal with this experience. She said, "I was supposed to have transplant last month and they canceled it as my blasts were too low. That caused my first anxiety. I had extra chemo and chemo pills. My platelets went from 34,000 to 269,000 and I'm on the way to see if they will do the transplant on the 4th. The cancellation really blew me away. Do you have any suggestion on how to manage that anxiety?"

(00:49:12) [Dr. Megan McMahon]      Sure. Well, first of all, I'm sorry that you went through that experience and I imagine you might not be alone in kind of the bumps in the road in this journey. I'm reminded of the acceptance we were discussing today of allowing these unpleasant experiences to exist, to acknowledge, I mean, even just bringing awareness here of this is painful, right? And I think sometimes we also, if we have anxiety, it can be because we have a lack of control of a situation. And it sounds like in this case, that's what happened, right?

Things didn't go the way we had planned, a little bit out of our control. And I think sometimes moving to a more emotion focused coping, maybe there's nothing you can do and problem-solve logistically, right? To move up your date or get things rolling. But moving to a more emotion focused coping. So whether that is trying to engage in some more mindfulness. For that intense emotion though, those distraction techniques of making yourself busy with things that you enjoy, right? Until we get to that transplant date can be something that's helpful and helps us get through the day to day.

(00:50:24) [Sue Stewart]      All right. Thanks for that. This question was from someone who's actually at the far end of that last question that we talked about. She wants to know what your experiences are with very long-term BMT survivors who have GVHD. Her transplant was 43 years ago, is that correct? She's still feeling anxiety, some depression, mostly due to body images that resulted from GVHD complications and has quality of life issues today. She would have thought these feelings would have subsided by now. What can you suggest to help her get on a better track?

(00:51:04) [Dr. Megan McMahon]     I can take this one Dr. Howrey. So I would say reaching out to other support resources. I mean, being here today is one step and that's great. I think if there hasn't been a contact with an individual provider for support on depression and anxiety and body image concerns, all of them are extremely important and definitely something that an individual therapist can help with. Especially because you've been navigating this for a long time. And I think to the point, so maybe some folks that are only six months out or two weeks out or two years, varying time points, and maybe we've all had those feelings of, "I don't know why I'm feeling this way, everything's coming back good." Right?

But that fear of recurrence and these other factors of how we're living in survivorship after transplant are really important and that's why these providers like ourselves are here and all these other resources. I also want to mention too, we were just told by the BMT InfoNet team that there's going to be some support groups coming this fall for folks who have GVHD and also for caregivers. So engaging in a group setting, if that's comfortable for you, but definitely reaching out for more specific support maybe from either a group or individual I would recommend.

(00:52:22) [Sue Stewart]      Thank you. And yes, you're correct. We are going to have some support groups starting in the Fall. There will be an email going out tomorrow about that. So if you're interested, I would encourage you to sign up early because space is limited and the groups are going to have to be a manageable size.

(00:52:39) All right. This is a timely question. This person wants to know what advice would you give somebody who has anxiety about going to public places where COVID cases are high within the state?

(00:52:53) [Dr. Hillary Howrey]      Ooh, that's a pretty tough... that's a tough question. And I think dealing with the lack of control around having all of the COVID related concerns is really challenging because at the end of the day, we can only control our responses and what we do and not necessarily the environment or what other people are choosing to do. And I think some folks don't necessarily know, too, how impactful that is for people who have immunosuppression concerns because really, then, people that are immunosuppressed have to stay home, have to really take a lot more precautions than everyone else.

I'd say that if that is something that you are doing or experiencing with that anxiety, I'd say really trying to use some of the mindfulness exercises that Megan shared today, really trying to diffuse yourself as well from just because you're feeling a certain way doesn't mean either that it's permanent. It doesn't mean that it's necessarily always that way because I think there are situations that are certainly high risk, but sometimes when we get very anxious, we tend to allow that to color all of our future choices. And that's one of the ways that we can get stuck.

And so I think trying to really be mindful, be present in the moment and perhaps use some of those breathing exercises that Dr. McMahon pointed out today as well as depend on others for support. If there's ways that you can make accommodation so that you do feel safer, I'd encourage you to be assertive and seek what you need from those situations. And I also try to identify other ways to connect with people, connect with those things that are most important to you that are not necessarily as high risk.

(00:55:11) [Sue Stewart]      All right. The next question is how do I access ACT therapy on a regular basis?

(00:55:22) [Dr. Hillary Howrey]      I think certainly connecting with, depending on your situation, connecting with your treatment team. So I'm going to click back to the support resources slide here. Connecting with your treatment teams certainly could be a good first step because if they do have someone that focuses in psychosocial oncology or psycho-oncology or cancer psychology, any of those specialties, they may have specific training in dealing with these issues as they relate to cancer or cancer recovery or transplant recovery.

If that's not the case or you don't currently have a treatment team you're connected with, these support resources on this slide might be a good first step. I certainly think Be The Match probably could be a good first call or first point of contact because they have that counseling program. Leukemia Lymphoma Society also offers support groups and peer support and you could also use the BMT InfoNet mental health provider directory to take a look at what might be available to you for individual providers in your area.

(00:56:41) [Sue Stewart]     All right. The next question is from a caregiver. She says, "It's sometimes hard to know whether to be encouraging or to be empathetic with someone's distress. It can be seen as not understanding if I'm encouraging, but I'm not sure it's always helpful to be with someone in their daily suffering. Do you have any tips?"

(00:57:08) [Dr. Megan McMahon]      Sure. And if you have anything else to add, obviously do that. I think that sometimes a step that we skip over or underestimate is asking maybe the patient, whether it's a spouse or a family member that we're caregiving for, "What do you need in this moment?" I think also making sure that we're surrounding the patient or the survivor with resources, not just ourselves, right? But other people, maybe it's other family members or friends that can also help provide that support. But I think asking some times, "What do you need in this moment? Do we want to vent? Do you want me to encourage you?"

I think sometimes with patients too, it's finding out who the people are in our lives that are going to help lift us up or just let us vent and sit there with us while we're crying. But I think choosing the support people is really important. I think as caregivers, it's really hard because I imagine sometimes you feel like if you're doing one, again, you're missing out on the other. Maybe they really need to vent, but you're just trying to build them up and remind them of all the positive things going on in their life, for example. And I think sometimes asking the question if you feel unsure is a good step.

(00:58:25) [Dr. Hillary Howrey]     I think the only thing that I would add is that it's important to keep in mind too, that even though a positive attitude can be really helpful as you're going through treatment, it's not essential. It's not going to change any outcomes medically and certainly everyone is entitled to have up and down days. So I think asking that question sort of, "Do you need a solution or do you just need someone to listen?" Is really probably helpful because I think sometimes when patients hear, "You got to stay positive," and you're trying to provide that encouragement, it can be perceived as being dismissive of whatever pain or unpleasant experience that person's experiencing right now.

(00:59:11) [Sue Stewart]      Well, thank you for that. And the next question is, "How can I best deal with my impatience to get through post-transplant and back to my pre-leukemia life?"

(00:59:23) [Dr. Hillary Howrey]     Oh, that's a tough one. I think there's so much as Meg was talking about before, there's so much focus often on these milestones. So getting the transplant, going through the pre-transplant workup, getting discharged, going home, making it through the first 90 days. And then beyond that, I think it's pretty tough to stay focused on being okay and being present in the current moment rather than on where you want to be 6 months, 9 months, 12 months into the future or just being back where you were before transplant.

So I think it's important to set small goals that are achievable on a more day to day or week to week basis that can help you to see progress more quickly and might help to kind of loosen up some of that impatience, some of that longing to be somewhere different. And I think kind of taking that opportunity too to reconnect with maybe some of the values that you haven't been as committed to in the period following transplant or during transplant.

Those experiences of reconnecting with family or friends, or really working on your physical wellbeing or different aspects of you, as a person, may help you to kind of reinforce your progress and stay motivated, stay engaged in where you're at right now instead of where you are in an ideal future. And so I think that can be pretty motivating also to continue on a day-to-day basis really working at those goals.

(01:01:10) [Sue Stewart]      All right, the next question is from a mother whose child has GVHD. And she says, "A close friend recently turned on me for seeking emotional support with my son's GVHD. Especially during COVID, a lot of people don't have any capacity support and there is often pressure on the mothers of very small children to be strong and inspiring. The GVHD is long and unpredictable, and it can be very alienating. How do we invest in relationships when we're dealing, not just with chronic illness, with chronic and cumulative mental health issues?"

(01:01:56) [Dr. Megan McMahon]      Sure, sure. And this is really tough, especially as this person pointed out in the world of COVID. I'm reminded of this idea of post-traumatic growth and it's this growth that can come after going through a traumatic experience. And when we're talking about transplant, talking about GVHD, we're continuing to live in that maybe mini trauma, right? Or those more negative or distressing factors here.

Part of post-traumatic growth is also this realizing of relationship with others. And I think a lot of times we look to the relationships we already have built like maybe this friend that you're talking about or other people in our lives. And sometimes we're seeing how people can really step up and be that person for us, but also unfortunately how maybe someone wasn't there or are not there the way that we would hope they would be.

And I think part of it is not being afraid to make more connections even if it's in a virtual space. So even if it's joining this caregiver group through BMT InfoNet or a caregiver group in your community and building up other resources. Maybe this person is not someone who even lives in our state, right? We don't know. Maybe with these caregiver groups, for example, who can maybe understand our experience in a way that those more directly around us really have a hard time, especially given the chronic nature of GVHD and how lengthy this process can be. Anything you would add as Dr. Howrey?

(01:03:32) [Sue Stewart]      All right. The next question is this person missed the beginning of the talk, but wanted to know whether ACT works better with certain age groups, for example, for pediatric patients.

(01:03:52) [Dr. Hillary Howrey]      Well, certainly if we're talking about a pediatric patient, I think it depends on the developmental age of that child. There are ways to apply ACT based interventions to children, but they have to be appropriately tailored because we're not going to talk to children about committed action because they're not necessarily going to grasp what that means unless we make it more concrete and more specific to their day-to-day life. So it will look a bit different, but yes, certainly ACT can be applied, different ACT interventions can be applied to populations of all different ages as long as they're appropriately tailored to that individual's needs.

(01:04:37) [Sue Stewart]      All right. And then a question thanking you for talking about values. She says she's having a hard time identifying things that she still values that she valued in her life before, mainly relationships with husband and family, but also her commitment to exercise, physical health and her passion for gardening. Do you have any suggestions for moving closer to those values at this stage? She's day 50 after transplant.

(01:05:06) [Dr. Hillary Howrey]      Yeah, I think certainly it's normal, as I said before for a lot of those values to shift. And I think sometimes even that shift and taking a step back and recognizing that those values have shifted can be pretty de-centering and kind of unexpected if you're not looking for it. And so I think really using your mindfulness, using your day-to-day awareness about what are the things that you do when you experience the most joy? Or how is it that you most notice yourself feeling alive and happy? Or what are the things that even just you find yourself looking forward to?

And so if you can kind of, as you go through your day, jot those things down, make a note of them and then over time kind of notice the patterns about, "Wow, it looks like I was actually really looking forward to a phone call with X, Y, and Z," or, "I was really looking forward to having dinner with someone that I haven't seen in a while." Those kinds of recognitions can help you to better understand what values you are feeling most connected to here and now because they might not necessarily be the same that they were before.

But there might be new relationships in your life or old relationships that maybe you were less connected to before that suddenly you feel more revitalized around and can get excited about. So I would take some time to pay attention to the things that you find yourself looking forward to.

(01:06:53) [Dr. Megan McMahon]      I was going to add that no action is too small. If we go back to the values and the committed action discussion, that even if we think about COVID in general, right? Our way of committing to our values has had to look different, right? Maybe we're engaging with people on Zoom, for example, as opposed to in-person. In this example, maybe gardening is something that's really important to this person who's 50 days out from transplant, but getting out there right now is too much.

So even if we have Pinterest and looking at things for gardening on Pinterest, if we watch a show that's related to gardening or a YouTube video. So we're engaging with these values in a different way. Just like exercise, maybe we were a hardcore runner or spinner and that's different now. That maybe engaging in activity is making that walk to the mailbox and back. There's no action that's too small. And all those small things also are working towards values, so just keeping that in mind as well.

(01:07:52) [Sue Stewart]      All right. Thank you. The next question is "my husband has GVHD and has huge mood swings because of the medicine, but he doesn't recognize it. I'm trying to get him to see a therapist, but he says he doesn't need one. What do you suggest? "

(01:08:12) [Dr. Hillary Howrey]      I mean, certainly that can be a challenging situation because I'm sure that living with this person or caregiving for this person, you're also experiencing those mood swings with that person. I would suggest bringing this up if you're able or you feel comfortable, bringing this up at a medical oncology or a hematology meeting, whatever type of medical doctor that you see. Because often sometimes the medications that we give folks post-transplant can really impact mood.

And some of those medications may be imperative, but some of them may be able to be adjusted a bit or changed if they are really interfering with quality of life. There's also the possibility of starting a new medication that might better help to regulate mood in this time period where there's this biochemical thing that's happening with the medications for the transplant itself. So it might not be something that he has to be on forever, but it could be a helpful tool in the meantime.

So those are all things worth considering. I think also just on a day-to-day basis, trying to really come at that with some compassion and trying to work with him to identify how that's impacting both of you and how life might be better or help both of you to live a better quality of life that is better managed. And obviously not doing that in a way that feels punitive or like you're trying to point out a flaw, but rather, approaching it from a place of like, "This is a really challenging thing that we're dealing with and we want to make it the best that it possibly can be."

So I think a lot of that is in how you frame it, but also making sure that he knows that it's not necessarily you blaming or telling him that he's the problem. Because I think that can often backfire and lead to avoidance of wanting to tackle that issue.

(01:10:40) [Sue Stewart]      All right. Next question is, "I find that as a survivor, I'm all in to try new things to help me through this time, but I sometimes get eye-rolling from my family and support people. What is a good way to deal with their skeptical attitude?"

(01:11:08) [Dr. Megan McMahon]      Sure. I'm trying to understand this question or this content a little bit more. I think what it sounds like is that this person is living according to their values, maybe trying new things, engaging in things during survivorship I think can maybe bring a sense of joy and the others around them are giving them negative feedback. So maybe it's even communicating if these things are in accordance with their values.

Again, I'm not sure some examples of what this could look like for this person, but communicating with the people around us that this is an important part of my cancer journey and my treatment post-transplant. I think if it is in line with your values and it's not necessarily impacting somebody else negatively that maybe you're on the right track. That's kind of what I'm gathering from this question. And I think just communicating the benefit and the value it's bringing you directly, if you think again, it's worth having that conversation with this individual, especially if they're close to you.

(01:12:18) [Sue Stewart]      Closing. Alrighty, with that I think we'll need to wrap up the webinar. I'd like to thank our speakers for joining us today and I'd like to thank the audience also for participating with some really excellent questions. This session was recorded and it will be available on the BMT InfoNet website sometime next week, complete with a transcript and a copy of the slides.

We will send you an email when it is available for viewing and you will also be added to BMT InfoNet's mailing list and get updates on other programs that we'll be offering. If you have any issues, any problems you'd like to have help with, please don't hesitate to reach out to BMT InfoNet. You can email us at, or you can phone (888) 597-7674. And with that, I wish everyone a good afternoon and please let us know if we can help.


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