Riding the Emotional Roller Coaster of Survival

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Riding the Emotional Roller Coaster of Survival

April 30, 2024

Presenters: Patricia Fank PsyD and  Grace Melvin-Mooney LCSW, Rush University Medical Center

Presentation is 40 minutes long with 20 minutes of Q & A.

Many thanks to Sobi whose support helped make this Survivorship Symposium possible. 

Summary: This presentation discusses psychosocial challenges that can arise before, during and after a bone marrow/stem cell transplant or CAR T-cell therapy, strategies to manage them, resources that can help, and when to consult a mental health professional.

Highlights:

• Pain, mobility issues, fatigue, side effects of treatment and uncertainty about the future can lead to challenging emotions that are difficult to cope with.
• Sometimes the brain overreacts to stressful situations. We need to learn techniques to counter an exaggerated stress response.
• There’s not one type of coping style that will work well in all situations. We need a toolbox of different strategies to use in different situations

Key Points:

(05:12): Grief is a reaction to loss and is common after transplant or CAR T-cell therapy, due to the many losses patients can experience.

(07:04):  Anxiety after transplant or CAR-T therapy is common and can make it difficult to relax and enjoy health after treatment.

(10:08): Medications can cause mood changes and symptoms of anxiety.

(10:44): Major depression occurs in some patients and can cause difficulty concentrating, trouble sleeping, loss of appetite, and loss of pleasure in activities once enjoyed. It can also cause extreme sadness, guilt and hopelessness.

(17:25):  Exercise, being in nature and access to green space can lower the risk of depression and improve concentration and attention.

(19:21):  Periodically checking in with yourself to assess your emotional wellness can improve quality of life. There are apps that can help.

(24:20):  Stressful situations cause several areas of the brain to trigger a fight, flight or freeze response. If the brain overreacts to stressful situations, it’s important to know ways to moderate the response.

(28:15):  Mindfulness is the ability to be fully present, aware of where you are, what you're doing, and not be overly reactive.

(30:59):  Cognitive behavioral therapy (CBT) helps patients think and react differently to stressful situations.

(34:08):  Asking for help can be hard, but it is important.  It's also okay to set boundaries. We sometimes need to teach people how best to help us.

Transcript of Presentation:

(00:01): [Andrea Feldmar]:  Introduction of Speakers.  Welcome to the workshop, Riding the Emotional Roller Coaster of Survival. My name is Andrea Feldmar, and I will be your moderator for this workshop. I'd like to thank Sobi, whose support helped make this workshop possible.

(00:15): It's my pleasure to introduce today's speakers, Dr. Patricia Fank and Ms. Grace Mooney-Melvin. Dr. Fank is an Associate Professor in supportive oncology with a joint appointment in the Department of Psychiatry and Behavioral Sciences and Internal Medicine at Rush University Medical Center in Chicago. She has specialized in psycho-oncology for the past 12 years, joining Rush in 2020 to focus on the integration of supportive oncology into the bone marrow transplant program. 

Ms. Mooney-Melvin is a licensed clinical social worker with the Rush University Bone Marrow Transplant (BMT) team. She provides case management services to patients going through autologous and allogeneic transplants and CAR T-cell therapy.

(01:11): [Grace Melvin-Mooney]:   Overview of Talk. Hi, everybody. Thank you for joining us today as we discuss the emotional roller coaster of survival. We're thrilled to talk about this topic and discuss the emotional roller coaster that one may experience as a part of survivorship. Survivorship encompasses patients at all points in the transplant process. Survivorship starts on the date of diagnosis and throughout the transplant journey. Along that journey, it is normal to experience emotional distress and psychosocial challenges.

(01:50): Learning Objectives.  So, with that said, we hope to focus on these learning objectives. We will identify common psychosocial challenges after transplant and CAR T-cell therapy, distinguish between normal adjustment post-treatment, and determine when to seek outside support, and also to help develop strategies and resources to manage these challenges after both transplant and CAR T-cell therapy.

(02:17): Throughout our presentation today, we'll discuss and identify psychosocial challenges that may arise throughout transplant, strategies for adjustments to these challenges, when to seek outside support, and resources that can help when going through this process.

(02:39): [Dr. Patricia Fank]:   Transplant and CAR T can feel a bit like a roller coaster with ups and downs and twists and turns. Thank you, Grace, for your introduction. I'm going to start by talking about some of the psychosocial challenges. And as the title of this presentation today suggests, we know that transplant and CAR T can feel a bit like a roller coaster with ups and downs and twists and turns. And we know that for many of you there really is no aspect of life that has gone untouched. So that's where we're going to start today, by taking a look at some ... and this list is by no means exhaustive, but it's a start as we try to capture just how winding and impactful this roller coaster can be.

(03:18): Pain, mobility issues, fatigue, uncertainty and side effects of treatment can lead to challenging emotions that are difficult to cope with. For many of you, the roller coaster may mean living with painful and uncomfortable physical symptoms. It might be living with fatigue or mobility issues, living with and getting to know a new body, living with uncertainty, living with graft-versus-host disease. Maybe it's feeling burnt out from medical symptoms and from illness and side effects. It may be redefining relationships and intimacy, redefining a sense of self or who you are. And all of this, and more, can leave us living with new and challenging emotions that might be really difficult to cope with.

(04:03): There is no wrong or right way to feel after transplant or CAR T-cell therapy. Some of those emotions are listed here on this slide. And like the last slide, this is also not exhaustive. The roller coaster leads to many emotional ups and downs. There's no right or wrong way to feel during or after transplant or CAR T therapy, and there will probably be times when you're worried, times when you're scared, times when you want to cry, and that's okay. As Grace said in her introduction, this is all very normal. And sometimes it's reassuring to hear that these emotions are normal.

(04:35): So really, we're going to talk more about anxiety and depression both in the next few slides, but I want to highlight a couple of things from this specific slide. The first is that emotions occur on a continuum. And the presence of those, like I mentioned, is very normal. All survivors experience a wide range of emotions and not everyone goes through those emotions in the same order, at the same time, or the same amount of time, and these emotions, like that roller coaster, can twist and turn. But the important thing to remember is that you're not alone, your feelings are common, and there's support available for you, which we will talk more about.

(05:12): Grief is a reaction to loss and is common after transplant or CAR T-cell therapy, due to the many losses patients can experience. The second thing I really want to highlight on this slide is that feeling of grief. That's toward the bottom of this list. You may be surprised that grief is included here. Many people think of grief as only a reaction to death, but what we actually feel is grief after any type of loss. That's really important because, as you know, there are many losses that come with a diagnosis of cancer or needing to get a transplant or go through CAR T therapy.

Many survivors describe feeling that they lost a sense of who they were as a healthy, well person when they were diagnosed. Others experience grief from loss of hair or the fact that their body may have changed as a result of treatment, or the way that they feel about their body may have changed. Sometimes it's the loss of a job, the loss of independence, physical mobility, strength and stamina, loss of your immune system and your ability to go out and see other people and socialize like you could before. All of these losses can be emotionally painful and cause feelings of grief.

(06:11): Many survivors have gotten so used to coping with lots of change, big or small, that they don't always allow themselves time to deal with the natural feelings of sadness, or anger, or grief that accompanies those losses. And too often people close to survivors don't really provide themselves time or make time for those emotions either.

(06:30):  Friends and caregivers can try really hard to say only positive things or encourage you to think positively, and they may not always recognize that there are other tough emotions that are happening as well. However, experts really agree that it's helpful to let out feelings of grief, to share those, experience those, sit with those, processes those so that we can start to enjoy some of the positive feelings or experiences in life again. We'll talk more about some of the resources and the tools that you can do toward the end of the talk today.

(07:04):  Anxiety is common after transplant and CAR-T therapy and can make it difficult to relax and enjoy health after treatment. Digging a little deeper into anxiety. Anxiety is a common reaction to both the diagnosis as well as treatment itself, side effects, uncertainty, and the end of treatment, too. In its simplest definition, anxiety is a feeling of fear. Fear can be important for self-preservation because it alerts us to danger. It allows us to get ready to respond. But this anxiety can focus our energy so that our mind, and our body, and our spirit can react effectively and get us through challenges.

(07:35): Some survivors cope well. They can respond to things as needed, and they know when they need to make decisions. Sometimes, however, anxiety reactions can make it really hard to focus. It can make it hard to relax or to enjoy health after treatment. And honestly, researchers don't really know why some of us cope better or in more productive ways than others.

(08:03): Some symptoms of anxiety and fear are listed on the slide. This can include a rapid heartbeat, shortness of breath, sweaty palms, agitation, sense of panic. Some of those effects can be caused by certain kinds of medical treatments as well. Sometimes medicines that are prescribed can cause feelings of agitation or restlessness that are very similar to anxiety.

(08:26): It's also important to be aware that sometimes when we stop taking medications, or substances like nicotine, we can develop those symptoms. Caffeine is one that many of us use, and those can also cause similar restless or increased heart rates, those kinds of symptoms.

(08:43): Some transplant and CAR-T survivors experience ongoing fear of relapse and anxiety when it’s time for scans and checkups. I want to mention the topic of the fear of relapse disease and cancer recurrence or fear that cancer might be coming back. It's really tough to live with feelings of uncertainty, and it's quite common for many people to experience fear and anxiety shortly after ending treatment or ending active treatment, and living with survivorship, and trying to adjust to what life looks like once treatment is completed. If you're struggling with that, we'll talk about resources and how to utilize your medical team and leverage support that may be available both within your medical institution or in your community.

(09:24): Some survivors also find themselves getting really anxious about annual checkups or tests. They fear that cancer coming back even years after a diagnosis, and it's really understandable. Again, we will continue to talk about resources.

(09:40): Survivors often feel sadness which can be made worse by isolation after treatment, other people not understanding what you’ve been through and anger over ways that your life has changed. On this next slide is more so about depression. I often hear people say that they're feeling sad, they're feeling down, or they have the blues. Sometimes this is even made worse by feeling isolated after treatment or while you're immune suppressed. Sometimes it's because other people may not understand what you've been through. Sometimes we feel angry about our situation and about the way that life is now.

(10:08): Medications can cause mood changes. Chemotherapy and some of the medicines can also cause mood changes, just like we talked about they can induce some feelings similar to anxiety. Those mood changes and feelings of depression can get better for some people as you get further away from diagnosis or treatment, but sometimes it doesn't. Sometimes they continue or they go away only to come back again and surprise you. All of these feelings are on a continuum, and it's normal. There is no one right way to feel or to respond emotionally as you go down this journey.

(10:44): Mental health providers talk about a diagnosis that's called major depression, and that really involves some of the symptoms you see on the slide, difficulty concentrating, trouble sleeping, loss of appetite, loss of pleasure in activities that you used to enjoy. People with major depression may also have feelings of extreme sadness, guilt, hopelessness. And I think the good news is that there are many effective treatments for this kind of depression, which we'll continue to talk about.

(11:16): One of the things that I want to highlight right now is this mind-body connection. We've talked about the consequences of illness and how those can impact us physically, socially, and emotionally. However, we like to separate those from each other. And yet really, what we've learned is that all of these are very interconnected and that these changes and stressors directly impact each other. 

(11:44):  Experiment to demonstrate the mind-body connection. I want to highlight this mind-body connection, and we're going to do this as a little experiment today. I want you all to take a look at the lemon that you see here on your computer or on the slides that you're looking at, and I want you to sit comfortably and just breathe slowly for a few minutes. When you're ready, you can feel free to close your eyes or lower and soften your gaze and just breathe deeply and slowly and imagine that lemon. Imagine that you're standing in your kitchen or the kitchen of someone that you know. Choose a kitchen that you're very familiar with that's associated with some pleasurable memories.

(12:26):  As you see different kitchens that flash through your mind, just settle on one. Imagine that you're standing at the doorway of this kitchen. You may glance around. You see the walls, the cabinets, the counter tops, the floors. You see the appliances in this kitchen, the refrigerator, the stove, maybe the dishwasher. You look at the counter tops, and you notice things that are placed there. Over the sink there may be a window. Maybe the window is open and there's a soft breeze that's blowing in. There are pleasant smells in this kitchen. It's a really warm and inviting place.

(13:10):  Bring your gaze to the counter and notice a beautiful wooden cutting board that's sitting there. And on top of that board is a bright yellow lemon, this lemon from the picture. You notice its color, this vibrant yellow. You notice the shape, the size, and you reach out and you pick up the lemon. You notice how it feels to your touch, how the skin is both smooth but slightly bumpy.

(13:40):  Next to the cutting board, you see a sharp knife. Return the lemon back to the cutting board. Carefully pick up the knife in your dominant hand and hold that lemon steady with your other hand and cut that lemon in half. As you do, you feel the knife slicing through the fruit and it falls open and reveals this beautiful jewel-like pulp in neat rows. Do you see the fresh white pulp and perhaps some seeds? Drops of juice have spilled onto the cutting board.

(14:18):  Now, take one half of the lemon and cut it again, making it a quarter size slice. Put your knife down and bring the lemon quarter up to your nose. You're aware of the sharp fresh citrus scent filling your nose. Touch the lemon to your lips and notice the sensation. Now open your mouth and bite into the lemon.

(14:42):  If you've closed your eyes, feel free to open those and you'll see an image on the slide. And just think about it, did you notice any sensation? Did you notice increased saliva in your mouth? Did you start to pucker? Could you maybe even smell a little bit of that citrus? Many people are probably nodding yes. They're saying yes right now. Really, I want you to just take away how even though there's no lemon in front of us, your mind is powerful enough that it created some physical sensation within your body just through visualization, okay? Just keep that in the back of your mind. We'll continue to reflect on that as we go today.

(15:33):  I am switching gears a little bit to talk about adjustment. Because what does all this mean, right? We've talked about how our diagnosis and our treatment, all of this has a huge impact on every aspect of life, how it can create a whole bunch of emotions. How we know that our physical treatments, and our body, and our mind, and our social interactions are all deeply intertwined and we really can't take those apart and separate those. So, what does that mean for us? What do we do with that information? How do we use this to learn new ways to cope with the challenges that CAR T and transplant bring?

(16:12):  The focus of the remainder of this talk is adjustment: starting to learn or starting to work toward adjusting, or adapting, or modifying, based on our current circumstances and our current situation.

(16:36):  The strategies for psychosocial adjustment include a whole host of different things. Some of these are going to be talked about in other presentations this week, so I'm not going to delve into all of these. If you want more of that mind-body connection, there's a presentation on meditation you can listen to. There are presentations on eating well, nutrition, sleep, cognitive functioning, and so much more, so I encourage you to listen to some of those. But there are a few things that we will delve into a little bit more.

(17:10):  There is no one-size-fits-all in terms of coping, so I'd encourage you to experiment. And if something doesn't seem to work well for you, that's okay. Try a different one or continue asking for help or looking for alternative strategies.

(17:25):  Exercise, being in nature and access to green space can lower the risk of depression and improve concentration and attention. Some of the strategies I'll touch on today include exercise. Strive for at least 30 minutes of active movement, which not only promotes a healthy body, but it's really great for the mind as well. It's a great stress reliever, and we're going to talk a little bit more about stress as we go.

(17:45):  Exercise doesn't have to be training for a marathon. It can simply be walking. It can be getting up and moving a little bit more. It can also look like running, or biking, or swimming if you're able to do those things. But if not, maybe it's just moving around the house a little bit more or walking outside.

(18:07):  We know that nature is also amazing for our mental and emotional health. Nature can decrease anxiety levels, it can lessen stress, and feelings of anger. Exercise is better when we're outside. I know not all of us live in areas where we have nice weather year-round. But if you're able to get outside, I encourage you to do so.

(18:29):  Regular access to green spaces has been linked to lower risks of depression, improved concentration and attention, so take advantage of those early morning hours or evening hours when the sun's not so bright and get outside when you're able.

(18:45):  Hobbies are also really important. New hobbies, such as arts and crafts, games, gardening, volunteering, participating in clubs if you're able to do things like that, anything that involves creativity, sensory engagement, self-expression, relaxation, cognitive stimulation are all linked to good mental health and well-being. Again, some of these you may say, "Nope, that's not for me," or you may not be able to do. But hopefully as we go today you'll find one or two things that you'll be able to take away that you can try.

(19:21):  Periodically checking in with yourself to assess your emotional wellness can improve quality of life. There are apps that can help. Another strategy that can be helpful pertains to things like self-monitoring, which is an umbrella phrase that describes our ability to check in with ourselves, to monitor our emotions, our decision-making. With the ebbs and flows of life, having the ability to check in with ourselves and assess our emotional wellness can really help to improve quality of life.

(19:44):  There are apps that can set reminders or send you triggers or notifications to check in with yourself and log how you're feeling or how you're doing. Some of that is being aware of your limits, observing and recording your behavior. What are you doing? When do you do it? How long and how often?

Are there certain times of day where you have more energy or you're able to do a little bit more? Can we pace activities and divide those up with periods of rest so we can accomplish more than if we try to do everything all at once?

How do you feel when you're engaging in different activities? Some may produce more feelings of joy or may be easier to engage in and others may not be the right strategy for you, and that's okay.

(20:35):  Similarly, by prioritizing tasks and breaking things down into smaller steps can give you control. There's this thing called completion anxiety where we get anxious about trying to tackle an entire task all at once. Sometimes thinking about having to cook a full meal feels really daunting and feels really overwhelming. But is there a way to break that down?

Can I do some veggie prep earlier in the morning and then take those vegetables and sit at the kitchen table where I can rest while I'm chopping and put it all in a bowl and cover it up and put it in the fridge. Then later in the day I can grab a few more ingredients and take those to the table and do a little bit more prep and then store it in the fridge. And then in the evening I just put it all together and stick it in the oven. Those are all ways that we can break tasks into smaller segments that can feel more manageable and not feel quite so overwhelming.

(21:30):  Focusing on what you can control rather than what you can’t control is important.  The other thing is focusing on things that we can control. It's very easy to point out and to notice all the things that we used to be able to do that we can't do anymore. I'd encourage you to try to channel your thoughts to, "What can I still do?" Because I guarantee you there's more that you can do that you may just be unaware of or not focusing your attention on. Those are also things that therapy ... and we'll talk more about that as we go … but therapists can definitely help with that as well.

(22:03):  It's really helpful to think about life events and all of the situations that we encounter each day, some that are within our control, like what time we set our alarm to wake up in the morning, and some that are not, like an accident on the expressway while we're on our way to work or on our way to an appointment.

(22:25):  There’s not one type of coping style that will work well in all situations. We need a toolbox of different strategies to use in different situations. Stress reactions tend to be unique to each person, and sometimes we cope better than others. One reason could be that we're using different types of coping styles. And there's not one type of coping that's going to work well in every situation, so we need a toolbox that has a lot of different strategies that we can pull from depending on the situation.

(22:48):  We are a problem-focused-driven society. We are trained from a very young age to solve problems. If it's raining, we get an umbrella. If it's cold, we grab a jacket or we turn up the thermostat. We start teaching kids at a young age to do that. We are not very good when problems are out of our control because that requires emotion-focused coping, meaning that we have to process the emotion that that stressor brought up because we can't change the situation itself.

(23:26):  For many of you, as you've gone through treatment, through transplant, through CAR T, you can probably identify several uncontrollable stressors that continue to create strong emotion where we need to use more of that emotion-focused coping.

(23:41):  As we talk more about stress, I'd like to ask, how many of you have ever lost control of your emotions and you've done something in the heat of the moment that you've later regretted? My guess is most of you, right? Perhaps you've lost it, you've blown up at someone, a partner, a child, a work colleague, perhaps the driver of another car … to the degree that later you realize that probably was uncalled-for, a little bit unnecessary. The answer is yes for most of us, if not all of us. To that I say you've been hijacked by your amygdala.

(24:20):  Stressful situations cause several areas of the brain to work together trigger a fight, flight or freeze response. This is my little science part of this lecture. What happens is that whenever there's a stress response or a stressful environment, several areas of the brain work together to send a distress signal that triggers your fight, flight, or freeze response. I'm sure most of you have heard that before. But those signals happen so quickly in the brain, that amygdala sending those so fast that most of the time we're not even aware. The wiring can be so efficient that that amygdala, the hypothalamus, can start that cascade before your visual centers even have a chance to process. Think about somebody who jumps out of the path of an incoming car without even realizing what they're doing because the brain reacts that fast.

(25:06):  That stress response often occurs when the demands of the environment are greater than our ability to cope with them. I want to say that again. When you have that fight, flight, or freeze response, a lot of times that survival instinct is kicked into gear because your brain has perceived that it does not have the ability to otherwise manage whatever that stressful experience is.

(25:35): Sometimes the brain overreacts to stressful situations. We need to learn techniques to counter an exaggerated stress response. It is a survival mechanism. It's evolved in all of us over the years, and it's helpful. It saves many of our lives. And yet, we know that sometimes our body or our brain is overreacting to things that aren't life-threatening. That instinct can happen in traffic jams, with work pressure, with health concerns, family difficulties, and it's really hard to put the brakes on those kinds of stressors. That becomes more of a chronic stressor, right? A long-term stressor. But it's signaling the same reaction in your brain that those acute, urgent stressors do.

(26:18):  And the best way to prevent an amygdala hijack is to be more aware of our emotions, our ability to understand and manage those, check in with those, to use that information in positive ways to relieve stress.

(26:40):  Another key in amygdala hijacking is recognizing our acute stressors and becoming aware of those triggers so we can make plans for those. We can employ stress management techniques. Employing those techniques can look like breathing, which we'll touch on in a minute, as well as some of those things we mentioned earlier, like exercise, or journaling, or simply writing things down.

(27:13):  Although we can do some prevention of that amygdala hijack, it takes time. It's not easy. And there are some days where the brain just overrides us, it overrules. Despite our best efforts at prevention, if you find yourself in the middle of one of those hijacks, there's a number of things that you can do. You can name it. You can just say, "All right, brain, you've currently hijacked me."

(27:36):  You can remember this six-second rule. This is one that I personally love. Your amygdala is only overruling you for six seconds. After that, the rest of your brain catches up and you have the ability to then start to plan how you respond. You can slow down, you can take some deep breaths, you can turn off that hijack. You can draw on mindfulness and that mind-body connection to calm your nervous system. You can take a time-out if you need to. You can step away from whatever it is that's stressing you in the moment.

(28:15):  Mindfulness is the ability to be fully present, aware of where you are, what you're doing, and not be overly reactive. I know I've mentioned mindfulness already a handful of times. And like I said, there is another presentation on meditation, so I'll just touch on some of this briefly and then I'll encourage you to listen to that presentation for more information. But mindfulness is the ability to be fully present, aware of where you are, what you're doing, and not be overly reactive.

(28:43):  According to a study, mindfulness can help improve emotional intelligence in three major ways. It can help you learn how to recognize the emotions, strengthen your ability to control those, and by practicing mindfulness every day, you develop parts of your brain and make them stronger.

(29:00):  There are several mindfulness techniques one can use including deep breathing, relaxation and medication, expressive writing and journaling. There are several techniques that you can use. There's deep breathing, box breathing, wave breathing, and triangle breathing.  I encourage you to look all of these up if you're interested.

(29:19):  Relaxation and Meditation.  There are also many different relaxation and meditation techniques, like progressive muscle relaxation, which is systematically attending to the muscles and using imagery to drain tension away. There's scanning your body for stress or tension. There are meditation practices and using the breath to anchor awareness in the present moment. And there's visualization, like what we did earlier with the lemon where you're using imagery and you're visualizing peaceful and relaxing images.

(29:55):  Writing and journaling.  Writing can be beneficial for many people. There's a lot of research into the benefits of expressive writing and we found that people who write some of their deepest thoughts and feelings report the fewest symptoms and had the fewest unscheduled visits to their doctors. There are more recent studies and research that show similar benefits in reducing symptoms and improving physical functioning. There are other studies that have shown that even one 20-minute writing session can be enough to change the way that we think and feel about cancer or about our disease. And those effects actually lasted three weeks for the folks in that study.

(30:35):  There's a lot of research that's been conducted on writing and journaling. There's no one way to write. Just do it. Bullet point. Send yourself a text if you want to, shoot yourself an email. It can look like anything. Sometimes for many people it's easier writing than saying things out loud. So think about, again, "What might work best for me?"

(30:59):  Cognitive behavioral therapy (CBT) helps patients think and react differently to stressful situations. Thinking differently is taken from the concept of cognitive behavioral therapy. That's a type of therapy that is really popular. It's an effective research-based, evidence-based form of counseling or psychological treatment. The key message of cognitive behavioral therapy is that the way we think (cognition) and what we do (behaviors or actions) can both directly affect the way we feel. It also follows that if we want to change the way we feel, then we could change the way we think and the way that we act.

(31:39):  Here’s a situation that says, "I woke up feeling really fatigued."  I'm sure most of you can identify with this. We talk about unhelpful thinking because waking up feeling fatigued, that happens for many of us. But sometimes we start to think, "I'm fatigued," and then immediately I feel down. I don't have motivation. I may stay in bed because I feel really tired. I withdraw. I socially isolate. I stop eating because maybe I just feel too tired or I've lost my appetite.

(32:13):  Then we start to make connections. Feeling fatigued causes me to feel a certain way. And yet some people may feel fatigued yet still have the ability to get out of bed or to push themselves. Why is it that some of us can react differently when fatigue is how we both feel? Well, a lot of times it's the meaning that we attribute.

(32:36):  On the slide, this person said, "I've been dealing with this for months and it's never going to get better." Those thoughts start to snowball, and so that leads to feeling down. That leads to staying in bed. That leads to withdrawing because that may lead to a feeling of hopelessness.

(32:55):  What cognitive behavior therapy can start to do is it can help us to think about the way we think. "Is there a more helpful way to think about some of these things about feeling fatigued?" Because I can think really negatively about feeling fatigued or I can try to see if there any other way to think about this.

(33:19):  Maybe we say something like, "This is really hard. It's really disappointing. But I've done hard things before. I can do hard things again. I'm a strong person. I've been through a lot. I've got a great support team. Maybe I'll have to have them help me a little more today. But if they encourage me, maybe I can at least get out of bed."

(33:42):  There's no one way to describe this that's going to fit for each one of you. This is very much individualized for every person that we work with. But our minds are not our friend many times, and it's really, really important that we learn how to recognize when our mind is telling us things that aren't helpful.

(34:08):  Asking for help can be hard, but it is important.  If this speaks to you or you're interested in learning more, please follow along with some of these next couple of slides that talk about asking for help and asking for support. I know that can be really hard to do, but it's also so important.

Here are a few strategies, a few ways that you may be able talk to yourself to normalize asking for support. I know our society tells us that we should be independent, and we should be self-sufficient, and we shouldn't rely on other people, and yet we know that life doesn't always work that way. We used to live in villages. Extended families used to stay together in communities. Support was built into everyday life back in the day, and that was beneficial for many reasons. You may be giving a gift to others when you ask for help.  It’s okay to ask for help.

(35:04):  It's also okay to set boundaries. We sometimes need to teach people how best to help us. That could look like setting boundaries, like learning how to ask others for help. This is a skill that I use frequently when I'm working with folks individually. And again, I'd encourage you to read through this and take a look and reach out to a counselor if you want to learn more.

(35:29):  When to Seek Outside Support.  The last piece, before I turn this back to Grace, is knowing when to seek outside support.

• If you have concerns that are persistent, that don't seem to go away
• Maybe it's a lack of interest or pleasure
• You're feeling really low and not like your usual self
• You can't find motivation to do things, even really important tasks
• You have trouble sleeping on a regular basis
• You have a lot of negative thoughts about yourself or the world or your future
• You're unable to control your thoughts or your worries
• You're feeling more anxious than usual

If at any time you have thoughts about wanting life to end or even wanting to harm yourself, those are all times when I encourage you to reach out. We'll provide some resources on these next few slides on how you can do that.

(36:21): [Grace Melvin-Mooney]:  988 is a free hot line you can call for support if you are feeling suicidal or need to talk with someone. In response to what Dr. Fank just said, if you are at that point where you're feeling like giving up or you're starting to have thoughts that are intrusive or a bit confusing, there is the 988 lifeline, which you can call for support if you are feeling suicidal and you need someone to talk to. Keep that as a resource as needed.

(36:47):  Other resources you tap into include your transplant or CAR-T team, a therapist outside the cancer center, and support groups. Additionally, in general throughout transplant, don't forget to utilize your transplant team to help you. That can look different at every cancer center, but it's going to be your doctors, nurses, dietitians, psychologists, social workers. When you have questions, don't hesitate to ask for support when needed. Often, those providers can connect you to other resources, whether it's physical therapy, counseling, financial resources, occupational therapy. Utilize us to get through this process.

(37:26):  In addition, with everything we've been talking about and the emotional roller coaster that is transplant, some people find it very helpful to find someone to talk to outside of the cancer center. A therapist can provide a good outlet for processing emotions and could give you some of these new tools and strategies for coping during this difficult time.

(37:49):  As you can see on the slide, the different ways to find a therapist include contacting insurance. If cost is an issue, go to your cancer center social worker, see if there's a specific therapist on site or within the community. In addition, BMT InfoNet has its own directory of mental health providers.  You can narrow it down based on therapy, people who have gone through transplant, etc. 

(38:21):  In addition to that, there are resources like support groups, whether it's local or national or disease specific. They're either virtual or in person. They provide overall support for going through what you're dealing with right now.

(38:40):  Then, we list on the next few slides a number of those peer support resources that you can refer back to.  Take a look to see might be helpful to you. I know we're at about time but there are different apps for mindfulness, as Dr. Fink was talking about before. Other common things that comes up are wigs, beauty workshops, how we look physically as we go through transplant. Utilize these resources. Reflect back after you look at the presentation. Thank you.

Questions and Answers

(39:23): [Andrea Feldmar]:  Thank you, Dr. Frank and Ms. Mooney-Melvin for this excellent presentation. We'll now begin the question-and-answer session. I'm going to start it off with our first question. Why does TBI and chemo cause depression and PTSD in some patients? Why does it affect some patients and not others?

(40:00): [Dr. Patricia Fank]:   I think this is a really personal and individualized question. Everyone responds very differently. Some of it is genetics, some of it is medications that people are on, some of it is past, previous experiences.  Somebody else may have had other events in their life that caused depression or they've had prior traumas. A lot of it depends on a person's life experiences and what they're bringing to cancer that can change how folks cope with and manage their cancer diagnosis or treatment. I think if you are someone who's coming to treatment with some of those other life experiences, that does increase the risk of having a more challenging time coping with treatment and looking for some of these resources that can help.

(40:59): [Andrea Feldmar]:  Great. Thank you. We've got another question. What strategies can I use to help treat prednisone-induced mania?

(41:09): [Dr. Patricia Fank]:   That that would definitely be one to talk with your medical team about. Make sure that they're aware that is a side effect. Then, we would usually refer those folks to a psychiatry team so that they can discuss medication that can be utilized to manage those side effects.

(41:30): [Andrea Feldmar]:  Okay, great. We've got a couple of these. This is a theme that I see going. Can you please talk about the emotional impact of living with having a severely immunocompromised immune system after CAR T? I think that there are some people that are very nervous about social interactions and how to manage this.

(41:57): [Grace Melvin-Mooney]:   Yeah, we see that often, that concern of feeling isolated and knowing when it's time to be able to be back out in the world or when you feel ready. But before that, there are a lot of options. During COVID we got pretty used to virtual options, but a lot of the different organizations that are available, like Be the Match, BMT InfoNet, Bone Marrow and Cancer Foundation, all have virtual support groups that provide an outlet for patients with similar experiences.

(42:43):  Bone Marrow and Cancer Foundation has an app where you can link up with a mentor or someone else that might be experiencing these same concerns, but it gives you another social outlet within your own home. Eventually, talk to your doctor and your team about what easing back into the world looks like in a safe way and ways for you to get involved.

(43:17):  Sometimes cancer centers within their surrounding area may have a house or a center specifically for support groups and counseling for patients going through cancer treatment. They also have virtual classes as well, whether it's a cooking class or yoga. These are other ways to feel involved but in the safety of your own space.

(43:45): [Andrea Feldmar]:  Yeah. Those are some great ideas to sort of seek out some other ways of socializing if you're concerned about infections. Thank you. Here's an interesting question. Is it common to want to make drastic changes in a survivor way of life, like selling everything and living in a minimalist sort of style? Is it common to want to make some dramatic changes?

(44:16): [Dr. Patricia Fank]:   Yeah. Well, I think that being diagnosed with something like cancer or having a pretty significant life event can alter our perspective. Sometimes the things that we used to value or the things that used to be important to us, once we've gone through something like a cancer diagnosis or a transplant, it may shift and those things may feel less important. If somebody was holding onto a lot of things, after going through cancer, they realize, "No, I have more value," or, "I place more value on my relationships or my social engagements, and things and stuff is less important to me." It's not uncommon for people to talk about these types of perspective shifts.

(45:03): [Andrea Feldmar]:  Right. Great. Thank you. Does the fear of cancer returning ever go away after CAR T-cell therapy?

(45:15): [Dr. Patricia Fank]:   There are a lot of things that go into this. For some people, this fear may be stronger than others. Whether or not you have anxiety or things like that, we need to take that into account. Imagine you're holding a sheet of paper that's right in front of your face. When you're first diagnosed, that paper is up and it's right close to the end, like the tip of your nose, and that's all we can see, and that's all we feel like we can focus on.

(45:50):  Over time, we are able to slowly start to lay that paper down in front of us. Maybe it's sitting on the desk right in front of us, but, still, we have more perspective. We can see other things in life. And over the years as we get further away and we're in good health, that piece of paper gets shifted off to the side of the desk or put under a pile. It doesn't ever disappear, right? As you have scans or you have other visits, that piece of paper might become more front and center again.

(46:22):  Our goal is that over time we learn to live with or find ways of adapting, like we were talking about, to continue to focus on the positive things or the things that bring us joy in life so that our perspective isn't only that sheet of paper right in front of us.

(46:43): [Andrea Feldmar]:  Terrific. Thank you. Here's another question. Somebody is taking high-dose Dexamethasone as part of a treatment plan, and they're wondering, are there any drugs or therapies that can be used to manage personality changes? Apparently, the need to stay on the drug for GVH for the foreseeable future and the side effects are very difficult to deal with. Any suggestions on that?

(47:15): [Dr. Patricia Fank]:   Unfortunately, those high dose steroids are tough, right? They can cause a lot of that irritability and short tempers, lack of patience. I encourage you to talk with your medical team. I understand that it's necessary for your health and GVHD. And see if there's a psychiatrist within your institution, within your medical team that you could talk with about additional medications that can help manage some of those unfortunate side effects that come along with steroids.

(47:50): [Andrea Feldmar]:  Yeah. Can you speak to any way that somebody can really prepare for a stem cell transplant psychologically?

(48:04): [Dr. Patricia Fank]:   Every transplant center does that a little bit differently. I encourage anyone that's considering a stem cell transplant to discuss their medical team the option of transplant to reach out and to learn what support resources exist, both within my medical institution and within my community.

(48:28):  It's really helpful to meet with the team to talk about what this might look like, try to wrap our mind around it as much as possible to understand what life might look like after a transplant, to meet and talk with other patients that have gone through something like this and get their perspectives or tips or tricks from them. Know that there are counselors and social workers out there who are happy to help you process and learn and come to terms with what this might mean for life for you.

(49:10): [Andrea Feldmar]:  Okay. Thank you. I think we've got time for one last question. Do you see any difference between stem cell transplant versus CAR T therapy emotionally? Do you see any difference on those fronts? This will be our last question.

(49:31): [Dr. Patricia Fank]:   It's not so much about differences between types of treatments or even types of disease, it's individual differences, what we bring with us, our life history and our prior experiences. We bring all of that into whatever the new stressor is. We can apply this to a whole host of different situations. It's more individual and how we ourselves react and respond, what we're bringing with us into that new stressor.

(50:10): [Andrea Feldmar]:  Thank you so much. On behalf of BMT InfoNet and our partners, I'd like to thank Dr. Fank and Ms. Mooney-Melvin for a really helpful presentation. Thank you, the audience, for your excellent questions. Please contact BMT InfoNet if we can help you in any way.