Welcome, everyone, and thank you for joining us for the International Myeloma Foundation's Living Well webinar: Psychosocial Care, Common Support Needs and Coping Skills. I'm Robin Tuohy, Vice President of Support Groups.
Our speaker tonight is Dr. Elaine Wheat Dawson, who is a clinical psychologist and assistant clinical professor at City of Hope Department of Supportive Care Medicine in Duarte, California. Her interests in the field of psycho-oncology include nonpharmacological means of coping with chronic pain and psychosocial supports.
The IMF understands that health and wellness matter to everyone, but especially important for patients with myeloma and those who care for them. In this webinar, Dr. Dawson will focus on common emotions when dealing with myeloma; coping skills in living with myeloma; dealing with chronic pain; communication with family, friends, and your healthcare team; and then of course there's going to be an opportunity for questions and answers.
So before we get started, it's always my pleasure to thank our sponsors for this evening's program. And tonight that is Bristol Myers Squibb, GlaxoSmithKline, Janssen Oncology, and Sanofi.
So [inaudible 00:01:44] today's webinar we will have the speaker slides available plus the video replay on the IMF website as the webinar concludes. So you can go to myeloma.org if you'd like to listen to the replay if you need a little refresher, or to play it at your support group meetings or share it with other family and friends as you feel appropriate.
I want to make sure that all of you understand how to participate tonight. So when we get to the Q&A section, here's what you'll do. You'll open that Q&A window and then you just type in your question there and we will get to as many as we possibly can. And if you do have a question that does not get answered, please know that you can contact our info line. And there you see the number 1-800-452-CURE, or 2873, or you can also email at [email protected].
Another important thing for all of you to know is we really take your input seriously. We need to know did we hit the target? Did we answer the questions you needed? What is your feedback so we can continue to bring you these valuable programs? So at the end of the program, you're going to have this little survey pop up for you. If you don't have time tonight, that's okay because we're going to email this to you also and you can respond that way so we are sure to get your information and feedback.
So now it's my absolute pleasure to introduce our speaker. I've honestly been looking forward to this myself. So Dr. Dawson, no pressure here at all. Welcome, and you may please begin.
Dr. Elaine Wheat Dawson:
Oh, thank you so much, Robin. I'm so happy to be here. I hope I can live up to those high expectations. I certainly hope that this is helpful for all of our attendees, current and future, and thank you so much for my introduction.
My name is Elaine Wheat Dawson. I'm a clinical health psychologist here at City of Hope National Medical Center. Just really quickly, I think working with oncology became a passion of mine when I first did a neuropsychology rotation here when I was still in grad school. And personally, cancer impacted my life at a young age and I always had this intellectual curiosity about it then moving forward, including how people cope with it. So that's so interesting because it leads us to today's topic and the reason that I'm here.
So the goal of what we're about to discuss is I hope that we can review together some common experiences and support needs across the treatment trajectory, promote a better understanding of some of the available supports to patients and their loved ones, hopefully give you some tools that you can use for coping, but also maybe consider some of the stressors and support needs that are unique to care partners or caregivers of patients.
Oh, sorry. That's my welcome slide. Welcome. So happy to be here.
I first wanted to just start by really briefly talking about the fact that it helps to consider how we provide support across the continuum of treatment. So different support needs emerge at different stages or phases of treatment. So as a clinician, research is telling us more and more that our goal should be doing assessment of support needs early and often.
Let's talk about what some of these phases are in treatment. So consider the context of new diagnosis and early stages of treatment and what support needs might be emerging then. So unfortunately, many, many, many years ago, we did not have a lot of information about what the support needs were of patients who were newly diagnosed with multiple myeloma. That was minimally studied until recently. This is starting to improve. We're starting to better understand this.
What we do know from recent studies is that acceptance of help tends to be highest at earlier phases of treatment. So as a clinician, this is important for me because it means that there's this important window to receive and offer help and make people aware of what supports are available to them. At this phase, usually at new diagnosis and early treatment, informational needs are high. So information and education is particularly important, including potentially education about the diagnosis itself. I've worked with people who had never even heard of the diagnosis until they were facing it themselves. So we also know that going through the diagnostic process can be quite lengthy and stressful for some people. So it's important to consider that in terms of support needs. And anecdotally working with people who are going through this, I think there tends to be emotionally an experience of shock or overwhelm, and that can be an opportunity for support as well and I think it influences the informational needs that are present too.
Really briefly I just want to expand on this a little bit. We talked about accepting help at the beginning stages of treatment and diagnosis. And a recent study found that approximately 50% of people who were in that phase and newly diagnosed with multiple myeloma were interested in psychosocial supports. And the top three requested supports... Of this particular study, of course. Were relaxation techniques, counseling, and peer support groups, followed closely at four, five, and six by psychotherapy, support for their family members, and social service assistance, so logistical navigation of some of the social supports and documents and things. So it's interesting because the top three support needs... One is very practical. It's a tool to help yourself. The next is individual support, and the third is social support and connection with others, connection with peers.
And just as an interesting aside, the authors wondered and speculated why counseling was higher than psychotherapy. The two are similar, but they felt like maybe the term psychotherapy sounded too intense or maybe stigmatized and counseling sounded a little more open ended. But that's just an observation for me as a psychologist I find interesting.
Then another phase of care across the continuum of care is then treatment, being in the middle of treatment or maybe you've been in treatment for some time. I think it's important to consider here symptom burden of treatment particularly, including pain. So this can impact quality of life depending on what kind of symptoms you're having from your treatment itself. You may also be experiencing multiple doctor visits, unplanned doctor visits or infusions, unplanned hospital stays, or maybe longer planned hospital stays for things like transplant. So the context is important here.
And again, anecdotally, myself from working with patients, I think often emotionally there also tends to be a fear here of treatment effectiveness or treatment response starts to become more of a concern. How am I responding to the treatment? Or what's the plan moving forward?
And then another phase of treatment is remission or no evidence of disease. So Mullan originally came up back in 1985 with phases of survivorship and phases of treatment, and some people would call this extended survivorship, but more recently researchers have said it might be more appropriate to call this chronic survivorship, particularly for people who are dealing with a diagnosis that's more of a chronic disease or condition. And they would describe this as a time of celebration, uncertainty, and transition. So it can be all of these things. I think emotionally, sometimes the fear tends to focus here more on relapse or recurrence, understandably. Continued pain management is happening for some people if they have continued pain, but also late effects of treatment can be a factor here. It's something to consider. So if you're having any late effects like continued neuropathy, weight gain, I already mentioned pain, but more. It can be individual in that way, but something to consider when it comes to how we're coping and how we're feeling.
So no surprise from the psychologist. We're going to talk and pay special attention to emotional experiences that are common and maybe briefly talk about how and when to get support. So I'm opening with this silly meme and understated title, which is cancer is stressful. That goes without saying. And I know many people who feel this way. I work with many people who feel this way where this little dog is just trying to enjoy his cup of coffee, go about his daily life, and he feels like the flames are circling and he's just trying to focus on doing what he needs to do and saying, "This is fine. This is fine. I'm just going to continue on." I feel like I reference that meme a lot.
So really quickly, let's just talk about common emotional symptoms. So I want to start by saying I'm not trying to overpathologize here, but it's so normal to experience distress and to feel in some ways like you're on an emotional roller coaster when you've received a diagnosis and are going through treatment. And an increase in anxiety and depressive symptoms is common and it may not necessarily be to the degree where you meet diagnostic criteria for a mental health condition, but it certainly happens. We have more liability, more ups and downs in our emotions initially especially.
And also how we're doing emotionally can influence our unmet support needs as well. So if we're feeling more poorly, if we're feeling anxious or depressed, it can also mean that then we're going to report more needs from others, the medical team, from the people around us. And vice versa, if we feel like we're not being well supported and we need a lot more help than what we're getting, it can contribute to more anxiety and depression.
So quickly, I just want to review what those terms mean. So anxiety and depression are two of the most common emotional health symptoms for people who are diagnosed with multiple myeloma, but what is anxiety? So it can look different person to person, but some of the common presentations are persistent worry, uneasiness or tension, feeling restless, having some difficulty concentrating, racing thoughts, difficulty sleeping, muscle tension.
And conversely, depression looks more like low mood. Maybe you don't find pleasure in doing the things that you used to previously enjoy or you don't really have interest in doing things the way that you used to. Fatigue or low energy. Low motivation is another way of saying that. Difficulty concentrating, feelings of worthlessness or guilt, hopelessness. "I don't know that this is ever going to change or improve." Helplessness. "I don't think there's anything I can do in my current situation." But another symptom that's often overlooked is irritability and frustration. We tend to be more irritable if we're feeling more depressed.
So the way I like to address this is if it feels like these symptoms are interfering with your daily life or they're happening more frequently or they're around more often than they're not, it might be helpful to consult with a professional at that point. And we can talk about what kind of professional that is later when I talk about the resources that are available.
But I also wanted to just add the caveat that some of these symptoms can be so similar to some of the side effects that you might have from certain medications or treatment itself. So some of the ones that come to mind for me are difficulty sleeping, insomnia, muscle tension, low energy, low motivation. So it seems like there's some overlap there and if you ever feel like you're confused about if it might be medication versus a change in your mood or some combination of both, it can help to consult with a professional because we, they, know how to parse that out and do more assessment there.
I also wanted to add here that many of these emotional experiences can be shared and is similar between the person who is a patient and their care partner. So research though has identified some specific tendencies for caregivers. And one is that I want to just point out that care partners tend to endorse high rates of distress across the care continuum. So I know we talked about the different phases of treatment and research confirms for us that caregivers or care partners are very distressed, and for them it tends to be anxiety as the primary presenting concern followed by depression as well. So those two are still the most common, but anxiety tends to be the most common in care partners.
And another study found that unfortunately even in patients who had advanced cancer... Their caregivers still don't tend to get any mental health support or any mental health services. So clearly there are some hurdles to caregivers or care partners receiving support. And I speak for myself, but I think I speak for all clinicians working in these kinds of settings that we want to know more and better understand why that's the case.
I also want to address what is so important and something that I talk about all the time in my clinical work here with my patients is the theme of uncertainty and the emotional experience of fear of the unknown or really a theme of the unknown. So it's such a common experience across cancer care from time of diagnosis and especially... There was a recent study. I think it came out of Spain. And it was a qualitative study where they just interviewed caregivers and care partners and they found that it was a core theme across all of the people that they interviewed as well. So this is something that not only our patients experience, but also the person that's helping them. I think there certainly is a sense that diagnosis and going through treatment... Not only does it seem like there are things about the future that are uncertain, but it shakes our confidence or our sense of control over what's happening to us and what can happen in the future.
And certainly there's no quick fix for this and I don't mean to make it sound like there is, but I think one of the themes that I tend to talk about with the patients that I work with is trying to focus as much as you can on the things that you can control and breaking tasks down to smaller, more manageable steps because that can reduce some of that feeling of overwhelm, and also to seek guidance for the questions that can be answered because then it does minimize some of the unknowns that we can control for and give us a sense of direction. So I just wanted to make sure to address this because both in my anecdotal experience, but also in the research, this is really important to patients and families.
I also wanted to quickly talk about the role of grief. I don't know that this is often addressed as much as it could be. And when we go through cancer treatment, we experience grief. We have losses, sometimes big losses, and sometimes a series of multiple smaller losses. It could be something that we have to give up doing for a while or a role that we have to let go of, but it can bring about multiple reactions in us.
And I'm citing some of the research here by Dr. Kubler-Ross. It's many, many years in the making, and it just talks a little bit about some of the reactions of grief. So there's an image there on the left where they tried to draw the reactions as people, but on the right you'll see it more in text and in examples of denial, anger, and bargaining... "Maybe if I do this, then this will happen." For some people, this is also a religious or spirituality kind of bargaining. Depression, but also acceptance. And I think it's important to acknowledge these are not linear steps where you progress from one to the next in a neat and orderly way. They come in waves. They tend to come in waves, and I think we can recognize grief reactions within ourselves and also within each other and use that as information and an opportunity to communicate and seek out support when we need to. But also know that it's understandable and normal.
I wanted to talk briefly about practicing recognizing and naming your emotions and the importance of this for what we call emotional insight, or some people would say is emotional intelligence. And those are often building blocks for empathy and our ability to connect with other people too, so we can strengthen the way that we notice nuances in our emotions and make sure that we're checking in with ourselves about how we are feeling.
So I always try to revisit this idea that our emotions are data. They're like information for us. They are temporary. And I don't necessarily mean significant changes in mood that are for longer periods of time. I mean throughout the day. We may experience some changes in our emotion or flares in a certain feeling. And these are temporary and they tend to either teach us something or signal something to us. And one example I give is anger. Sometimes we feel angry because it motivates us to action and it usually means we feel wronged in some way or someone has taken advantage of us or violated something and it's like a call to action for us.
But I also wanted to pose that we don't necessarily need to react to every emotion that we have, because sometimes our emotions can be tied to an unhelpful assumption or thought or an interpretation of someone else's actions. And so I think sometimes we can notice them, practice noticing them, but also let them pass and not necessarily act on them in that moment. And really I think part of that is observing them and being able to recognize them.
So I always talk about how journaling can be really helpful for this. If you want to make sure that you're checking in with yourself and having some time to reflect on the emotions you're experiencing and explore them to a greater detail, writing is great. They have other apps too. The icon that's there on the slide... It's called My Life, and that's an app that has other resources within it like meditation and such. But it also has an emotional check-in feature where you can jot down how you're feeling at multiple points in the day and get a read for how you're doing and practice some of what we're saying here.
Quickly I want to talk about living with pain. This is going to seem so fast, but really quickly, this is an area of growing specialty for me as a clinical psychologist. Here at City of Hope we have a new chronic pain program that we're trying to implement called the Cancer Pain Rehab Program and I'm the clinical psychologist that's been working with that team. And it's been a wonderful experience, but it's such an important and relevant topic with multiple myeloma treatment and I wanted to make sure to at least briefly talk about it today because there are biopsychosocial aspects of pain that directly impact our coping and our wellbeing. And I quickly want to talk about those together.
So there's a lot of words on this slide and I won't read them all to you. You can come back and read it if you want. But the main takeaway that I want you to get from this is that pain functions as a stressor. Pain is like a stressor in the background for us. And the causes of pain can vary. I know with multiple myeloma the most common is neuropathy, steroid toxicity, bone lesions or fractures, pathological fractures, post transplant symptoms.
But what I really want you to take away is that pain or this stressor can cause a fight or flight response in our body. And there's a specific function of a part of our nervous system, the sympathetic nervous system, that initiates this and it prepares us to face a threat, prepares us to act when we feel distressed and we feel reactionary to the pain that we're experiencing. But if you have chronic pain, so that means daily pain that's maybe been around from six months or more and it's not from something acute like an injury or post surgical recovery... Those are acute reasons for pain. But if you have chronic pain, that response, that fight or flight hypervigilance, hyperreactivity, is no longer adaptive or helpful. If anything, it's just our body has less time to recover from these flares when we start to feel really distressed about the amount of pain that we're having.
So I wanted to review that the pain can cause us... It can impact our lives in other really specific ways. So we can tense our muscles for long periods of time. We can do this without realizing it and lead to more pain and hurt in other parts of the body. We can then reduce our involvement in activities because of the pain and have negative thoughts. And we'll talk a little bit more about negative thoughts in a minute.
But we know that pain and stress have a bidirectional relationship. So when we are experiencing more pain, our perception of pain is higher. It tends to lead to more distress. And when we're experiencing distress... Including symptoms of anxiety and depression, by the way. When we're experiencing more distress, we tend to report higher levels of pain. We're attending to our pain more. It doesn't mean the pain isn't real. It's absolutely real. It's just we're more likely to notice it and score it higher if we are also distressed. So that's important to know with regard to our emotional health.
Really quickly, this is just trying to give you visuals for some of the cycles and the interaction of our pain with other parts of life. So that visual on the left there is the cycle of inactivity we often get into when we are dealing with chronic pain. So it starts with we have pain, so then we stop moving as much and we get more deconditioned. Our muscles lose mass and strength. Our joints aren't as well lubricated with synovial fluid. We also feel discouraged because we're deconditioned. We may not be doing things the way that we used to. And so when we are discouraged, we're less likely to initiate activity. We're less likely to go do things because we feel like, "Oh, I just can't do that anymore. I can't do it the way I used to." So we don't get out. We see people less. We exercise less. Then not only are we more distressed, but now we're also further deconditioned because we're not initiating things the way that we used to. And then the cycle continues.
Other considerations. We also get into patterns of overactivity and underactivity when we're dealing with chronic pain. So often I work with people who are waiting for a good pain day and then when that comes, they overdo it and they try to accomplish a big project or they do everything they've been waiting to do for the good pain day and then they're paying for it for the next few days or for the next week. So it's that cycle of overactivity, underactivity and that can impact us in day to day life and emotionally and socially.
And there on the right, that visual is just showing that chronic pain directly impacts our actions, what we choose to do, how we feel, and the way that we think, even in day-to-day life. And also those things interact with each other so each one can impact the other. And you can see how pain is not just a physical issue. It impacts other areas of wellbeing.
So as a care partner or a caregiver, I know that it can be very difficult to watch a loved one live with chronic pain and try to support them through it. And I hope that maybe reviewing some of the nuances of chronic pain will help you recognize its influence in your loved one's life and support them in ways that might be helpful.
Okay. So now that we've talked about our emotions and we've talked about the role of pain and how they impact our psychosocial wellbeing and support, let's talk about how we can help ourselves and help each other.
So really quickly... Again, I know there's a lot of writing on this slide. I'm going to quickly explain. A lot of the text on here is referring to relaxation skills... Why they're helpful for things like pain. But relaxation skills are also incredibly helpful if you're feeling anxious or feeling stressed. And I think it's important to review together that just like any skill, they do need to be practiced with some regularity in order for you to see their maximum benefit. And I always try to stress this for the people I work with because they might try a relaxation skill once or twice and not necessarily notice a big difference. But with regularity you can see an improvement and we'll talk about why that is.
But also there's all kinds of ways that, if you want, you can track your use of your relaxation skills and maybe measure your distress before you start and tension or distress afterwards and see with some practice if you see any improvements. That's something that I do in the work that I do with our chronic pain program. It's one of the homework assignments that we give, is helping people track their relaxation skill use and see if they see any patterns.
So quickly, we were talking about the fight or flight response, and we can actually help the other part of our nervous system, the parasympathetic nervous system, to help calm our bodies when we're starting to get into that really anxious, hypervigilant, overworked state. We can get some control over this process by practicing some of these skills and engaging this relaxation. And there are reported benefits that have been studied in the research and they include decreased muscle tension, decreased fatigue, improved sleep, and improved energy when you use some of these skills. And we'll talk a little bit more about how and why they work.
One of the core skills that serves as a basis for the others is deep breathing. And it sounds so simple and I know that. But one thing I want to also stress is that when we are feeling distressed, particularly when we're feeling anxious, we tend to take more shallow, rapid breaths. I don't know about you, but so many people that I work with who have been dealing with a lot of intense stress or feeling really anxious will say, "Gosh, I don't know what it is. I get this sense of pressure in my chest or I feel like I'm breathing really strange." And it's because when we are really stressed and anxious, it impacts our heart rate and it impacts our respiratory rate.
So deep breathing is important because it allows our lungs to try to really expand and help you breathe into your diaphragm. So this is like belly breathing, when you try as much as you can to see your belly rise when you're inhaling rather than your chest. It can help slow your breathing right down. It can improve your oxygenation and increase your energy. It's one of the quickest ways to try to decrease tension and help with feelings of anxiety and panic and it also serves as a foundation for the other coping skills, which we'll talk about right now.
The first is meditation. So meditation itself is a practice and a training in awareness and focused attention. So it is the actual practice of being an observer to your thoughts or some people say it's like an exercise in non-doing, which is an interesting way of explaining it. But there are all kinds of meditations that you can do and guided meditations, for example, that are available to you. It is a coping skill that has been practiced in many cultures all over the world. It can be independent of any spiritual or religious beliefs. I think that's one common misconception that I encounter a lot. And like I said, there's many different types of meditation or meditations focusing on specific things.
So there are some apps there below that are really common meditation resources that you can download if you're into smartphone things. I'm also going to talk in a few slides about some of the resources that are available to you on the IMF website. And this is one, and we'll review that together. But you can also, if you're not into smartphones and apps and things... You could also just go YouTube and look up meditations and there are some really helpful ones, some for chronic pain. I know City of Hope has some if you just look those up on YouTube, for example. But it's a really great practice to try and a really wonderful relaxation skill.
Another is mindfulness. So where I understand meditation is more of a practice, mindfulness is more of a quality or a way of living. So the goal here is intentional, non-judgmental, just being in the present and awareness of the present. So I often talk about this with the patients I work with by explaining that often when we are worrying about what will happen or what lies ahead tomorrow, next week, next month, six months from now, it tends to pull our thoughts and our focus or our attention to the future and it makes us less present in the here and now. So mindfulness is a really great practice to bring you back to today, what's going on within you in this moment, how you are interacting in the world around you, and it doesn't necessarily have to be still and calm.
I know people who do mindful eating or mindful walking out in nature. And I can only speak for myself, but I even try to incorporate this in mundane activities in daily life. When I'm having a stressful day and I have to wait in a long line at the cafeteria, I try to take a moment to focus on my breath, feel the feeling of the floor beneath my feet, maybe observe the swaying of the tree branches outside. If my hands are in my pocket, what am I feeling in there? My pen is smooth. The touch to my fingertips. And I know that sounds so basic, but if you practice that fairly regularly, especially if you find that your attention or stress is pulling you away to another day or another moment, it can really bring you back to now as a good coping skill.
Imagery can be also really helpful. Guided imagery is when someone is helping you imagine a place, a mental image in your mind. You can also do this by yourself, within you. And basically all you're doing is creating a mental image to help you feel relaxed. So the only assignment here is to pick a place that helps you feel calm. So it can be a place that you actually know. It can be a place of your own design. And I always give the tip that one way to make this the most helpful is try to incorporate your senses. And I couldn't cite the research for you, but I remember reading that this helps activate a different part of your brain and give you a really immersive, more calming experience if you can do that.
So again, I'll speak for myself. I know, for example, in an MRI I imagined myself at my favorite beach. And the way that I tried to make it really immersive was I imagined my toes in the sand and actually tried to imagine what that felt like if I were doing that now and the same with the sun on my forearms and the wind on my face and what the crashing of the waves sounds like. And you'd be amazed if you tried this at a time when you're feeling really stressed or let's say you're having some difficulty falling asleep. Sometimes this can help you really feel more relaxed and calm.
I mentioned this a few slides ago. There are some really excellent resources on the Mind, Body, & Wellness page on the website, and I want to make sure to direct you there. They have a mindfulness meditation video, some yoga resources. I also watched in preparation for this a really wonderful webinar they had I think back in the height of COVID or maybe I think February of this year about building your resilience during challenging times. And these are really great resources for you as well if you want to go back and check those out.
Okay. And next, for coping skills, I'm going to talk about enjoyable activities. And I know that may seem odd as a way of coping, but it is so important to still engage in things that are meaningful and enjoyable to you as much as possible. So I know that... Let's say you're in the middle of treatment. That may seem really difficult, but it is possible. In fact, I even discuss this with some of the patients that I see who are here in the hospital in the middle of a long hospital, stay for a transplant. And doing this really has an impact on our mood, our sense of enjoyment and playfulness in day-to-day life, and also just engagement, engagement in the world around us.
And I also wanted to add here that I know the concept or the advice of taking breaks is something that's often brought up to care partners. And I don't mean to be repetitive by bringing that up again, but it is pretty vital because we don't stop having needs or needing moments of joy when we are helping another person. In fact, I would say that sometimes it's the most important time, that we need to make sure we're having moments of fun and joy.
And so I know that previously we were talking about relaxation skills and how they're particularly helpful for stress and anxiety. I think that focusing on enjoyable activities can particularly help with mood and our outlook as well, in addition to helping with stress and anxiety.
Oh, so up here... I'm sorry, I didn't even talk about what's on the screen for you. So there on the left it's a list of enjoyable activities you may not have even considered before or maybe you used to enjoy them and haven't done them in a while. The other one is just a visual of 50 ways to take a break that I like and I refer to sometimes or print out for people as a resource when they're finding it hard maybe to find enjoyable activities or maybe their functioning has changed and something that they used to be able to do they can't do for a while or they have to be careful and follow isolation precautions. And so we have to get a little creative and I think you can refer to things like this if it's helpful to you.
Really quickly, I just want to talk about cognitive coping, which is really a fancy way of talking about helping yourself cope with your thoughts and how negative thoughts can get in our way or can stop us. So I like that little image of the little brain throwing negative thoughts around like they're confetti. And it's so common that we can have automatic unhelpful thoughts that come to us. This happens often without us meaning to. It's sometimes beneath our awareness at the moment, but it can totally impact our behaviors and our emotions. And also they're so closely tied to pain. So if you're experiencing pain, including chronic pain, it puts you at a greater risk of some of these unhelpful or negative thoughts also and also we can have more of them about the pain itself.
So we all do this day in and day out. And I think my advice here is, one, to try to notice. Okay, so first step is try to notice what you're thinking about. And you can do this even backwards sometimes. If you're feeling like your mood really changed or your emotions really changed in a day, try to go back and examine, "What was I thinking about before? Or what did I interpret about my partner's behavior? What was I thinking about the way that they behaved? Was I making any assumptions there?" And if you want, you can evaluate those thoughts, maybe push them a little bit. "Is that 100% true? Is what I'm thinking based in fear? Is it just completely based in fear or is it based in fact, it's actually a factual situation?"
And another thing is what do my experts say about this? So in medical care a lot, we tend to have a lot of fears and unhelpful negative thoughts around our physical wellbeing, symptoms, side effects, treatment. And I'll often refer to your experts. "Do you have trusted experts and what do they say about this?" As a way of challenging those unhelpful thoughts.
And then lastly, maybe even if the unhelpful thoughts are true... Let's say you're worried about the results of a test or a biopsy next week and we don't know what it is and it's really bugging you. Ask yourself, "Can I proceed anyway? Can I continue my day despite this thought? Can I not let it change what I'm going to do moving forward and outlook that I have on this day if it's something I don't have control over?" And I think that's a continued process for all of us, is finding a way to continue despite some of the things, some of the stressors we might be facing, and continue to meaningfully engage in the things that matter to us day in and day out, maybe even when our unhelpful thoughts are in the way.
Peer connection and support is such a wonderful coping skill and so important. Remember back in the beginning of my presentation it's one of the highest requested resources at the start of treatment and diagnosis. We are social beings and connection to others can be so helpful and so important. So I wanted to make sure that I direct you to... Also on the IMF website, there's this section of patient stories that you can access that's within the Mind, Body & Wellness page.
They also... I checked this out myself. Have the support group locator there. I was searching Southern California zip code down there and took a screenshot for you.
But there are other resources as well. Just one that I listed there is an app-based peer matching system called Cancer Buddy if you're into app-based resources, but there's a lot more than that that exists out there if you're trying to find people to connect to, whether that's on an individual basis or group basis.
Okay. Really quickly we're going to talk about communication as a coping skill and communication across a few different formats. So first I'm talking about from the perspective of the patient to the medical team. One thing I really want to impress upon you if I can is continuing to report symptoms that you're experiencing to your physician, even if this feels repetitive. And I'm making this recommendation from studies that show that individuals tend to feel resigned or experience some resignation about their symptoms if they're poorly managed or they continue to happen and they'll stop bringing it up at medical appointments. And self management is so important when you're going through care and going through treatment.
I want to make sure to encourage you to continue to report anything you're experiencing in terms of symptoms or side effects. Taking notes of course is important with regard to questions or symptoms and bringing them with you. I feel like that's a common recommendation, but also asking a question until you understand the answer. And I often will add the until you understand the answer well enough to explain it to someone. That's usually my tip. And this is of course not an exhaustive list. There's a lot of resources for communication tips, but this is just the start of what I wanted to encourage from patient to medical team.
And this is communication with loved ones, from the perspective of a patient to friends and family. So I think it's important to remember to ask for help, which of course is what everyone says, right? But I wanted to stress that it doesn't mean that you've lost all of your independence or that it will be this way forever. Sometimes it's hard to see that even the amount of support that you can need can vary and change and people won't know unless you ask. So it's important to ask. Be specific in the type of ways that other people can help you.
I won't go into some of the details there because I know we're already crunched for time, but I have some recommendations about that. You can tell people what you can do or what's very important to you to continue doing and setting expectations with those around you. And talking about any changes in routine that you anticipate or that you're continuing to experience and how you navigate those together.
So all of the earlier tips still apply, but I want to make sure here to also add a few more from the perspective of a care partner and communication with a loved one. So like I said, all of the earlier tips still apply, but I wanted to make sure to mention that silence doesn't necessarily have to be uncomfortable in conversations. This can be about treatment or not. Sometimes silence can give space for thinking deeply, continuation of thought, or when people are feeling stressed and overwhelmed.
Talking about subjects other than cancer or treatment obviously can help with a sense of normalcy and reduce feelings of overwhelm. But in particular, I want to make sure to bring up something that I encounter a lot, which is allowing your loved one to share, even if what they're sharing feels negative or seems like it's a negative emotion, because sadness and anger and fear are all very normal parts of going through treatment and survivorship. And I know that sometimes we can mean well and well-intentioned family members will want a person to be positive when they're facing a lot of challenges, but it's impossible to be positive all the time and not necessarily realistic. And so trying to help them work through when they're not feeling positive can be very validating and comforting.
So really quickly, it's really important to know where you can find other professional supports and resources. I want to talk about those really briefly here. So I didn't even include myself and other mental health professionals, which is funny, but I think I just assumed that because I'm a psychologist that might be a given. But I want to make sure to give a shout out to other mental health resources. So psychologists, licensed marriage and family therapists, licensed clinical social workers. Those are all professions that can provide therapy and counseling. And if that's a resource you need, certainly please look for that around you.
Psychiatry if you feel like medications might be warranted. Social work is such a vital part. I really enjoy collaborating with the social workers I have here at City of Hope. We already spoke about groups and how vital those can be. Spiritual care is so important and we'll talk about that in the next slide when we summarize why it's important to consider spiritual supports as well. Financial counselors can be really helpful for financial strain, dietician and nutritionists, educational resources. Here at City of Pope, we have a department called Patient, Family, and Community Education. We talked about how important information and education are at the beginning of treatment. Patient advocacy as well.
And lastly, I left off two or three actually really wonderful disciplines and it grieves me that I did. But here at City of Hope, we have what we call Child Life where they specialize in medical education for children and consulting with you about the ways to communicate treatment-based information to kids. So important. And also physical therapy and occupational therapy. I know that might be more in the realm of physical intervention, but your exercise and activities of daily living directly impact your emotions and your social engagement so they're also really meaningful resources. And if your hospital or medical center doesn't have some of these supports, information is often there. Referrals and resources are often there. So you can find similar supports in the community or outside of your medical facility and hopefully they have someone that can point you in the right direction and help you find where you need to be.
So I just wanted to summarize the fact that we raced through all of these different aspects of psychosocial support and the emphasis is that your physical health is intertwined with your psychological wellbeing, your social engagement, and your spiritual wellbeing. And I hope, if anything, that this has given you some helpful information, maybe reinforced the importance of psychosocial supports in your life or in your loved one's life, maybe given you some ideas about where you can look for additional supports and maybe given you some tools to try on your own.
So that was my hope. I hope this has been helpful. I'm so grateful that you joined me this evening or afternoon depending on where you are. And I know that we're crunched for time, but let's do some question and answer or discussion time now.
All right. Well, thank you so much. You did cover a lot and I'm looking in the chat box and bringing up some of the key questions here. It's very interesting when you were talking earlier about emotions being tied to other things. And you talked about pain. It reminded me as a care partner thinking about exhaustion as well, whether you're a patient or a care partner, because when you're exhausted, you're not dealing with things as well and your emotions may be heightened, whether that's anger or sadness, whatever that emotion is. But also in the myeloma world, one of the treatments that is usually combined is steroids. And steroids definitely have an effect on your emotion as well, right?
Dr. Elaine Wheat Dawson:
Absolutely, yes. That's something I tend to look for also in terms of the patients I work with. If they're saying, "I feel my emotional highs are higher and my lows are lower and I'm having a lot more ups and downs..." And we call that liability. And steroid use, especially high dose steroids, could definitely contribute to that. Absolutely.
And so I see a question over here about when you were talking about meditation, does it matter how long? Is five minutes enough?
Dr. Elaine Wheat Dawson:
Great question. I would argue not necessarily, no. I think of course if you can tolerate it and feel comfortable doing it for longer periods of time, I imagine that can be helpful in terms of impact of the relaxation and a longer period of time practicing the skill. But honestly, I know that for a lot of people, especially when they start, they find sitting quietly and focusing on the meditation can be really difficult, frankly. And so I actually encourage people to start smaller. Start with one, two minutes, five minutes.
And again, it takes some practice. So don't be discouraged if you sit down and you open a five minute meditation and a minute and a half in, you're finding that your thoughts are drifting elsewhere or you're feeling antsy or you're getting the urge to get up and do something else. Try to persist if you can because I think with regular practice it does get easier. I think what I would be more... Not concerned about, but what I would recommend more is trying to implement regular practice at least twice a day to build it as a regular coping skill that you're introducing to get the maximum benefit. So I'm less concerned, especially initially, with how long you're doing it for one period of time, but more are you building it in at regular intervals and making it more of a skill that you're using on a regular basis? Especially if you're distressed.
So I know that a lot of people when they go to bed and they're trying to go to sleep and their mind just goes into overdrive and they're thinking about a million things and like you said, the anxiety, the negative thoughts... Instead of the present, you're thinking about everything you need to do in the future. I know you mentioned of course meditations and the app Calm is very helpful. I know sometimes I've used that calm app and instead of a meditation, I've listened to a story. Sometimes there's stories about far away places and travel and it just takes you to another place. What do you think of that?
Dr. Elaine Wheat Dawson:
I think that's wonderful. Yes, I know exactly what you're talking about. It's those sleep stories, where you turn it on and it's meant to calm you, give you something that's maybe a little bit interesting, but also supposed to lull you into a sleep because of the calming voice and the content. I think that's wonderful. Those sleep stories are great. And I think in many ways it is incorporating some of the imagery that we talked about.
There are even other relaxation skills I didn't get to. One is called progressive muscle relaxation, where if you're having trouble sleeping, it's one that I sometimes will refer people to. And you can ask a professional about this or look it up on your own, but very briefly, it's almost like doing a body scan from your head to your toes and checking in with the different parts of your body where you tense them and then release them and relax.
And obviously this is probably counter-indicated for someone who has a muscular pain that they don't want to flare by tensing a certain muscle in their body. You can always skip that part. If you have a wrist issue, don't do that body part. But that's called progressive muscle relaxation and that can be helpful for difficulty falling asleep too. And it's this idea that you can't be tensing your muscles and relaxing them at the same time. So if you start at your head and work all the way to your toes one body part at a time and flex or tense and then let it go, it's almost like giving your body permission and a check in to relax at the end. And some people find that really helpful.
That's great. I see a good question here. So, "How does a myeloma patient find a psychologist qualified to talk about the challenges they face?" So how would you go about recommending a local resource?
Dr. Elaine Wheat Dawson:
That is a really good question and one that I hear a lot because I know that there are lots of really qualified mental health clinicians, but that doesn't necessarily mean that they have experience with oncology or that they have experience with multiple myeloma specifically and understanding the nuances of the diagnosis.
So I can speak... Specifically from where I work, I know that if there is a patient who needs to see a clinician... And we have a wait list here. Or they live further away and they want someone in the community. We have some resources available where we know of clinicians who have worked in oncology before and we have a resource list that we will try to give people.
So one idea that I have is your medical facility or hospital might know of some referrals in the community based on professional relationships or people maybe who previously worked there. So I would at least ask and inquire. Certainly could ask about some of the organizations that are diagnosis specific. Sometimes they will have a list of resources or counseling centers or therapists that they know of. I think it's Psychology Today has a therapist search on their website. And I need to check if this is true, but you can often look at what they have as listed specialties, so you can look there as well.
So I think sometimes starting at the level of either your hospital or your medical facility, but then also if there are any community resources or foundations and checking their list of resources either on their website or any of their publications might be helpful. Otherwise, you might have to do your own homework in a therapist search engine and see if oncology is a listed specialty and do your own work there. But I know that can lead to some other hurdles whether or not they accept insurance and things like that. So I know it's a difficult question to answer succinctly, but something that I come across a lot in my clinical work.
And I think that it's important to leave people today with resources and I know you have a resource page and this entire slide deck will be available. So we could look at those resources, but we will continue to work together and also to build that wellness page that you referred to. And we think that this is part of the whole body mind experience. It's not just myeloma. It's not just the physicality of it, but it's the mental part of it too. And how can we keep ourselves in the best overall health that we can?
So I'm a little sad that we're already at the top of the hour. We have additional questions, which I knew we would have, and I feel like we could do a part two on this and maybe we'll work together for part two. And so everyone-
Dr. Elaine Wheat Dawson:
Yeah. If you have more questions, keep them coming in and let us know so we can build a chapter two of this type of a series, and maybe that's what we can call it, is a series for all of you. So here's your reference slide. So that's very helpful and maybe we will continue to add to that. But we're at that point in time now where the Q&A is concluding and just keep those questions coming.
You can also send your questions in to the IMFs info line. I had indicated before that that number is 1-800-452-CURE, which is 2873, or [email protected]. Or go to your support group meetings and put these questions out there. And then the leaders of the support groups... They know how to reach out to me and we can continue to build this program together. And here too in that survey that we talked about. Put those questions in there as well so we've got all of this accumulated information.
And as we wind down, we thank our sponsors again for this evening's program. It's Bristol Myers Squibb, GlaxoSmithKline, Janssen Oncology, and Sanofi. And of course, thank you Dr. Dawson. You met all of my expectations and I just want more now.
Dr. Elaine Wheat Dawson:
Thank you. Thank you so much.
Dr. Elaine Wheat Dawson:
Thank you so much for having me. What a pleasure. I hope that this was helpful. I encourage the questions and the feedback because if there's something more that we can do, I'm happy to help.
Absolutely. And I really want to thank everyone for joining tonight. And don't forget the replay will be available, so go back to it, refer to it, and we hope this really helps you. So thank you everyone and be well.
Dr. Elaine Wheat Dawson: