Riding the Emotional Roller Coaster of BMT Survivorship

Riding the Emotional Roller Coaster of BMT Survivorship

July 12, 2020, Part of the Virtual Celebrating a Second Chance at Life Survivorship Symposium 2020

Presenter: Katie Schoeppner, MSW, LICSW, Supervisor, Counseling Services, Be The Match®

Presentation is 30 minutes with 25 minutes of Q&A.            Download Speaker Slides  

Summary: Emotional difficulties after a stem cell transplant are common for both the patient and caregiver. There are a variety of self-help techniques for dealing with emotional difficulties. Support groups, one-on-one peer support and therapists can be helpful in managing emotional challenges.

Highlights:  

• The emotional side effects of transplant can be challenging but there are many ways to address them and asking for help is the first step.
• Be The Match and BMT InfoNet host support groups for transplant survivors and caregivers. Your transplant center may also offer similar groups. Additionally, Be The Match offers counseling by phone with social workers free of charge.
• Peer support programs can connect you to other transplant patients or caregivers who understand your experience and help reduce isolation.

Key Points:  

04:08     Nearly a quarter of stem cell transplant survivors experience symposium of post-traumatic stress disorder (PTSD).

04:51     Our mind and body are connected. Feelings can affect physical wellbeing and physical health can affect emotional health.

06:05     Steroids, taken by patients for graft-versus-host disease, can cause adverse psychiatric effects

08:26     Physical signs of emotional distress include increased heart rate, muscle tension, headaches, sleep disturbances and tearfulness.

09:02     Emotional distress is unique to each individual and the it’s important to try interventions which match your needs, lifestyle and beliefs.

09:53     The first step in emotional recovery is allowing yourself space to grieve what you have lost because of getting sick and needing a transplant.

10:56     Improving communication by being open about your emotions with your medical team, as well as family and friends, can help you find the support you need.

12:29     A therapist or a counselor offers a defined space and time for processing emotions, an outside or fresh perspective, along with new tools and strategies for coping, and can identify potential mental health disorders.

14:35     Explore how you are coping and be proactive about getting help if you are isolated, using substances to cope, having extreme feelings or thoughts about self-harm.

16:04     Meditation, relaxation and self-care are ways to cope by releasing anxiety and connecting with your feelings.

22:59     Cognitive restructuring is an effective technique to reshape your thoughts to change how you feel.

31:36     Caregivers often experience emotional stress longer after a stem cell transplant than the patient

Transcript of Presentation

00:00     [Moderator] Welcome to the workshop, Riding the Emotional Roller Coaster of BMT Survivorship. My name is Marla O'Keefe and I will be your moderator for this workshop. It is my pleasure to introduce to you today's speaker, Katie Schoeppner. Ms. Schoeppner is the Supervisor of Counseling at Be The Match where she oversees a variety of support programs for BMT patients and caregivers, including counseling, support groups and the virtual survivorship program. Ms. Schoeppner is passionate about working with patients as they discover how to live a meaningful life amidst the challenges of post-transplant survivorship. Please join me in welcoming Katie Schoeppner.

00:45     [Ms. Katie Schoeppner] Good morning, everyone. Thank you so much, Marla, for that kind introduction. And thank you all for joining this presentation on Riding the Emotional Roller Coaster of Bone Marrow Transplant Survivorship. Today we're going to spend a short amount of time reviewing common emotional experiences of BMT survivors. I don't want to spend too much time there though. Rather, we're going to spend most of the time examining the connection between the mind and the body, and learning strategies for coping and survivorship and managing the emotional difficulties that often come with it. Of course, we'll have plenty of time for questions at the end.

Speaker’s background

So, I want to start by telling you just a little bit about me. First, and most importantly, I am not a transplant survivor. I say this in order to acknowledge the fact that all of you who are either patients or caregivers or family members, have the corner on your own lived experience. And for each of you, that's going to look different. I am a licensed clinical social worker. And in my current role, I provide individual and group counseling to bone marrow transplant patients and families at all points during the treatment continuum. I've worked with BMT patients since 2008, first at the University of Minnesota in their transplant program, and then for the past six years at Be The Match.

Lastly, as Marla mentioned, I am passionate about improving the quality of life for patients after transplant. Because while BMT is an incredibly miraculous treatment, it's really not all that impressive unless those who go through it can live well in survivorship. A patient that I worked with in the past sent me this cute cartoon that I wanted to share with you and I'm thinking that maybe I liked it in particular, because I'm from Minnesota, and we're currently in the heat of summer. So, I'm longing for that chilly Minnesota winter. So, as you can see in the cartoon, it's snowing. And the snow woman says to the snowman, "Look, stem cells."

Life after transplant looks different for everyone.

03:13  So life after transplant looks different for everyone. It may mean a variety of things. It may mean living with painful and uncomfortable physical symptoms, living with anxiety, living with fatigue, living with mobility issues, living with uncertainty, and for many people, living with graft-versus-host disease. In addition, at this moment in history, being a bone marrow transplant survivor intersects with living in the midst of COVID-19, likely the most complex and scary public health crisis any of us have ever experienced. And it's not just physical symptoms that make survivorship difficult, the emotional reactions, which is what we're focused on today can be extremely debilitating as well.

Common emotional reactions after a bone marrow or stem cell transplant

04:08     So, what are some of the common emotional reactions to BMT? They really broaden run the gamut from sadness, to gratitude, to grief, to anxiety, and even to joy. Even post traumatic stress syndrome or PTSD is increasingly recognized in post-transplant patients. We're learning through research that nearly one quarter of BMT patients may experience some symptoms of PTSD. Symptoms of this condition include things like flashbacks, nightmares, and intense anxiety that can sometimes lead to avoiding certain situations or places.

One of the more interesting things about emotional health is that it really isn't a separate part of recovery, even though we talk about it that way. Our minds and our bodies are connected at all levels. Our thoughts, attitudes and feelings affect the physical state of our bodies, and the physical functioning and use of our bodies affects our minds and emotions. There's a lot of research out there about how chronic stress causes physical reactions in our bodies. Things like headaches, chest pain, and sleep disturbance. There's also really interesting research demonstrating the impact in the opposite direction. For example, we're learning more about how the balance of bacteria in our guts and chemicals in our bodies such as serotonin and dopamine, are linked to mental health.

As a transplant survivor, you may see this connection in a lot of different ways. For instance, when your body strengthens, and your energy goes up post-transplant, you may start to feel happier and more connected to your friends and your family. Similarly, physical symptoms may lead to an increase in anxiety, or a bout of depression may cause an increase in fatigue.

How steroids affect mental health

06:05  I would be remiss in giving this talk about emotional impacts of BMT and not mentioning steroids, which are commonly the treatment for graft-versus-host disease. Steroids, most specifically prednisone can be an effective treatment for GVHD. Yet, this drug is a double-edged sword. Prednisone can be a lifesaving treatment that has some positive side effects, like better appetite, higher energy and relief for acute symptoms. And on the other hand, it can cause osteoporosis, swelling, weight gain, and can increase the risk of infection.

And along with these physical responses to steroids, there can be a significant impact on emotions as well. Adverse psychiatric effects while using corticosteroid therapy are actually pretty common. Mood disturbances, psychosis, lethargy, delirium, and depressive symptoms may all be caused by chronic steroid use. And it is so important to always talk to your transplant doctor if you're receiving steroid therapy to discuss potential mental health impacts of the drug.

Last year, I read a really powerful memoir that was written by Jill Stegman that details her husband's mental health struggles that resulted from prednisone use, and eventually led to his suicide. It's a powerful testimony of the need to maintain awareness of mental health symptoms and treat them quickly when taking prednisone. A story like Jill's really highlights how important it is broadly to constantly assess for emerging mental illness as you're going through transplant and into survivorship. So, let's talk about assessment.

When to Seek Help for Emotional Problems After Transplant

07:52  How do you know if you need help from an emotional perspective or if you're struggling with emotional difficulties? So, the first thing I would say, is to attend to your medical needs. Meaning, talking to your doctor about any symptoms you're having, or that others in your life might have noticed and get medical help for any physical side effects of treatment. And if you're taking corticosteroids, as I said, be sure to tell your doctor about any concerns or issues related to your mood.

Once medical needs are addressed, the next step in assessment of emotional distress is to attend to both physical and psychological signs. Physical signs of emotional distress include things like increased heart rate, muscle tension, headaches, sleep disturbance, and tearfulness. Psychological signs that are important to note are things like racing thoughts, uncontrollable worry, lack of interest in previously enjoyable activities, flashbacks, emotional vulnerability and isolation.

Once you've attended to your medical concerns, and sought treatment for them, and determined that you are noticing some signs of emotional distress, the next step is to determine the best way to get help. And there are lots of different ways to manage emotional distress and there really is not a one size fits all approach. It's important to consider what's worked for you in the past and what fits into your current lifestyle.

Allow yourself to grieve for what you have lost after transplant

09:27  So now we'll talk about some potential interventions and how to use them to feel better and feel healthier from an emotional perspective. As I said, strategies for managing the emotional roller coaster of BMT survivorship come in all different shapes and sizes. And my hope is that today you'll walk away with at least one new strategy for living well post-transplant.

First, and possibly most importantly, allow yourself space to grieve what you've lost as a result of getting sick and needing a transplant. With how life impacting this treatment is, it's really normal to feel grief. And it's important to be gentle with yourself.

Improve communication with doctors, family and friends to improve mental health.

And now getting into a little more of the nitty-gritty, one of the things that can be really important for emotional health is good communication. It's a key strategy for improving that emotional experience post-transplant. Medical appointments, it can be kind of hard, as I'm sure many of you know, to get all of your questions answered in a timely manner. So, one strategy is to prioritize your top concerns with your doctor and to tell her or him at the beginning of your appointment, “I have some questions I'd like to discuss today. Can we make sure we have enough time to answer them at the end of my appointment?”

Another helpful question to ask your provider is,” when should I be concerned about this?” If you're experiencing an emotional symptom or a physical symptom, ask specifically, “at what point do I need to follow up with you again? At what point do I need to call or consider coming into the emergency department?” And then lastly, if you ever have lingering questions that you didn't get answered during an appointment, send a message to your doctor through the online portal if you have one or call the clinic for a follow-up.

Being open with others about your emotional struggles can often lead to support from friends and family

11:32  With regard to communication in the realm of personal life and relationships, it seems really helpful when people feel like they can be open and honest about their struggles. Finding that vulnerability can open up unexpected areas of support in your life. When talking with your friends and family about what you're experiencing, it's important to be honest about your emotions, and to ask for what you need from them in terms of support. Sometimes it can feel uncomfortable and intimidating to talk with others about what you're going through. And it's important to know that the emotional impacts of transplant are real, they're common, and often they require the assistance of others in order to get better. By opening the line of communication between you and your doctor, and you and your support network, you'll feel better equipped to improve your emotional health.

How to find a counselor or therapist to help you after transplant.

12:29  While loved ones can be a really important source of support when it comes to the emotional impacts of BMT, it can also help to seek professional support. A therapist or a counselor can offer a good outlet for processing emotions, a perspective from someone who's not intimately involved in your medical journey, new tools and strategies for coping with hard emotions and identification of potential mental health disorders.

Sometimes finding the right professional can be a challenge, and there are many different elements that make therapy or counseling effective. So, it's important to take the time to find the right fit for you and to find someone that you connect with. A good place to start when looking for a therapist is to seek recommendations from a trusted provider such as a transplant doctor, a primary care doctor or a social worker that you know.

From there, it's important to verify that that provider is in your insurance network and what the cost of each session will be. If a therapist that you're interested in is in network but still has a cost associated, you can always ask about a sliding scale fee where the prices of sessions are adjusted based on your income. Additionally, it's important to make sure that your therapist is a licensed professional. And during the pandemic, when you're looking for a therapist, you'll also want to find out if they are offering teletherapy, and if so, what kind of technology is required to have to make that work. Note that some therapists may specialize in a certain type of therapy or have a certain type of focus, and you may need to try a few professionals to find the right fit for you.

So, a lot of people feel a little bit uncertain about when to seek professional help for emotional difficulties. I think sometimes it feels like more of a gray area than seeking medical help for physical symptoms. So, the best thing to do is really to tune in to a variety of experiences that may indicate that there's an issue that requires help from a mental health professional.

Feelings and behaviors that may indicate you need a mental health counselor

14:35  Ask yourself if you're using substances to cope. Are you having extreme high and low feelings or suicidal or homicidal thoughts? Be aware of any increase in difficulty you might be having and coping with life's challenges or a lack of joy or interest in things that you generally like to do. Also, pay attention to whether you're connecting with others, or are you isolating yourself from friends and family that you typically enjoy spending time with. Honestly, there's no shame in reaching out when you're struggling and it's really important to be proactive when it comes to your emotional health.

Peer support from other transplant patients and caregivers can be helpful.

15:15  Another form of social support can come from peers, people who've also been through bone marrow transplant. Connecting with other patients or caregivers can really ease that sense of isolation that often sets in as a recipient of an uncommon treatment. Talking to someone who gets it in the way that others don't can feel very healing and very validating. Also, other patients often have the best advice for coping and survivorship because they've been through it. Of course, under current conditions with the pandemic, connecting via telephone is probably the best, and fortunately, there are peer support programs offered by most of the national BMT patient support organizations and often through transplant centers as well.

Relaxation, meditation and mindfulness exercises, such as those used in yoga, can help ease emotional difficulties after a stem cell transplant

16:04  Relaxation is a simple and useful technique for easing anxiety and pain that can arise as a result of symptoms post-transplant. Mindfulness exercises often used in yoga or during meditation aim to bring your attention away from the stressor to the present moment, with an emphasis on the mind-body connection that we talked about earlier. Developing a yoga practice, probably using online videos right now, often include the focus on balance, gentle stretching, and grounding in the present moment.

Meditation practice incorporates breathing, personal reflection and grounding. You can also use mantras as a way to bring awareness to what's going on in the moment and to feel a little bit more connected and calm. And none of these practices need to be particularly complex. For Some people it is simply stopping for two minutes each day, focusing a bit on breathing and repeating a mantra which is simply a phrase that's calming or inspiring. Something like, I am healing every day.

Self-care is also a great way to relax, taking time for a long shower or a bath, spending time reading, or even just taking some quiet moments alone. Being in nature is also a great way to refocus, get some relaxation and take care of yourself. Lastly, if massage is safe for you medically, and you live with someone who can offer it, consider this as a way to relax and release anxiety or reduce pain. I mentioned this a little bit in the last slide, but a really simple way to infuse mindfulness into your everyday life is through simple breathing exercises.

Breathing exercises can be calming after a stem cell transplant

17:59  So now I'm going to pull us away from the presentation for just a minute and lead you through a breathing exercise. This is something that you can do at any time if you're feeling anxious or if you're experiencing pain in your body, or just need to relax. So, I'll guide you through what's called a calming breath. Note that if anyone doesn't want to do this, nobody's going to know, so don't worry. And also, just pay attention to your own body and make sure as we go through this that you feel good. And if you don't, you can step away and stop at any time.

So, the first thing I'd like you to do, I know you are all in a variety of places. You might be sitting down, lying down, standing up walking, but whatever you are, whatever you're doing, just take a minute to pay attention to your body and get comfortable. And then, if it feels okay to you, blink your eyes closed and draw attention to your breath. We're going to begin by exhaling all of the air out of your lungs. So, push all that air out of your lungs and then take a long slow breath in through your nose. First filling your lower lungs, then your upper lungs, and hold the breath for a count of one, two, three. And now exhale slowly through pursed lips while you relax the muscles in your face, your jaw, your shoulders, and your stomach.

Now we're going to walk through that exercise one more time. So, start by taking a long slow breath in through your nose. First, filling your lower lungs, then your upper lungs, and hold that breath for a count of one, two, three, and exhale slowly through true pursed lips while you relax the muscles in your face, your jaw, shoulders, and stomach.

And before we move on, just take a moment now that you've done a couple of those calming breaths to check in with your body. Did you feel any kind of decrease in muscle tension or do you just feel more centered and grounded? Guided breath work is really a great way to bring yourself back to the present moment and to help address anxiety. It seems like such a simple thing and maybe even a little silly at times, but it can be very powerful. So, I invite you to take that away and try to use some of those breathing techniques going forward.

Exploring ways to creatively express yourself can help improve mental health.

20:43  The next strategy that I wanted to discuss are expressive in nature. Sometimes I know that being a transplant patient starts to feel like it closes in on people and really impedes other parts of their identity. Using music, writing, art, or dance can help unlock feelings of joy and meaning that may have been dormant during treatment. Of course, I realize that not everyone thinks of themselves as an artist or a musician. However, this strategy really isn't about accomplishment in the traditional sense, but about expressing who you are in different ways.

These modes of expression can also help make meaning of the experience of transplant, drawing a picture of what it feels like to have the donor cells circulating in your body, or writing about what it's like to need steroid treatment, or even choreographing a dance representing the journey of BMT can be a powerful way to tap into and express underlying emotions.

Focus on positive aspects of the transplant survivorship experience.

21:47  Focusing on acceptance is another tool for encountering the emotional distress that comes post-transplant. The future may be uncertain and bringing your awareness back to what you have control over today can reduce feelings of being overwhelmed.

When feeling overwhelmed with how limited life may be in survivorship, practice gratitude and self-love, specifically towards your body in order to get some relief. Examples would be thanking your body for being strong enough for transplant or expressing gratitude for what your body did to get you through a difficult treatment journey.

I wanted to share these two quotes that came from patients that I've worked with who use acceptance as a form of coping. The first quote is this. "My body needs this, referring to prednisone now, but it doesn't mean it will be forever." And the second one, "You can't always control the cards you were dealt, but you can control how you play."

Cognitive restructuring can help address anxious and negative thoughts

22:59  The last technique I want to talk about today is something called cognitive restructuring. This technique is really effective because of a strong connection between our thoughts, emotions and behaviors. So, by changing your thoughts, you can, in turn, change how you feel.

My goal for the next slide is to send you away with some practical tools that you can use to improve your emotional health. Cognitive restructuring refers to the process of learning to identify and challenge irrational or maladaptive thoughts, which we refer to as cognitive distortions. And those cognitive distortions often have a pretty significant impact on emotional health.

Using a thought log to overcome “all or nothing” thinking and overgeneralizing experiences that negatively impact emotional health.

So, a few examples of different kinds of cognitive distortions include all or nothing thinking, over generalizing, and jumping to conclusions. All or nothing thinking is often irrational or exaggerated responses such as I'm either healthy or I'm not healthy. Overgeneralizing is coming to a general conclusion based on one single incident. An example of overgeneralizing is that you miss a dose of your medication, you conclude that you'll never be responsible enough to take your medications on time. Jumping to conclusions is when you decide something without having all of the facts to reach an unwarranted conclusion. An example of jumping to conclusions would be, my doctor did not call me back at the end of the day, like I expected, there must be bad news. So, these are just a few examples of cognitive distortions that are common that survivors of transplant might experience.

So, one of the tools that can be used to mitigate these cognitive distortions is a thought log to help retrain your maladaptive thinking habits. A thought log helps you become more aware of irrational thoughts, feelings and behaviors and the relationship between the three. Once you identify these irrational thoughts, you then come up with the alternative, more rational. And then, that more rational thought can ease anxiety around certain situations.

The four components of a thought log include the event, the negative thought that occurred, your physical or emotional reaction and alternative more rational thoughts. So, let's work through the example on the slide. The event could be, I woke up to yet another new rash, I'm feeling so fatigued today. The negative thoughts that results from that event is, I've been dealing with this for months. This is never going to get better. Your reaction, the emotions that come as a result of that negative thought are hopelessness, depression, lack of motivation. The alternative thought to replace the one that says this is never going to get better could be, this is really hard, I've gotten through hard things before, and I will get better.

The hope when using this tool, this thought log, is that following an anxiety-inducing situation you're able to come up with and challenge, excuse me, you're able to come up with an alternative response. So that when that particular situation occurs, you're able to challenge that negative thought with a more rational one. Again, using the example on the slide, the hope is that when you wake up with a new symptom, or you feel really tired, you're able to use rational thoughts to change your emotional reaction to that difficult situation, and that, in turn can reduce anxiety. This can be a pretty effective tool when it's used consistently and can help reduce overall anxiety and stress.

Put negative thoughts on trial and examine evidence for and against them

An additional tool to use when retraining your thought processes is by putting your cognitive distortions on trial and examine the evidence for and against this maladaptive thoughts. So, let's go through an example on the slide. Many patients have ongoing anxiety related to therapy and wonder if they will ever get better. While this is totally valid, and it's a rational concern for patients, oftentimes this anxiety is not rooted in facts. By unpacking the reasons for and against why the thought may be true, you can alleviate the anxiety around this fear. So, let's go through the example here.

Some arguments for never getting better includes simply that you've been dealing with complications for months. An additional argument might be that you just have a bad feeling, you just have a sense that you're not going to get better. Both are totally valid concerns. But now let's look at the reasons against why this statement could be true. Some fact-based reasons why it might not be true include the fact that your doctor told you to expect it to get better over time. Also, that there are new treatments you haven't tried yet for the symptoms you're experiencing, and that you've been abiding by your doctor's treatment recommendations since the beginning.

If you look at these arguments juxtaposed with one another, which is more supported by the evidence? The arguments against are rooted in fact, whereas the arguments for are more rooted in fear. By examining the facts around the concern, you can decrease anxiety. Similar to the thought log, this is a tool when used consistently can be very effective in reducing overall anxiety.

With that, I'm going to wrap up the presentation and really just want to thank each of you for attending today and putting some effort and sometime into learning about emotional health. Hopefully you'll leave knowing that even though the emotional side effects of transplant can be difficult to cope with, there are many different ways to address them. Take the help and support you need and find the tools that work best for you. And most importantly, remember there is hope. Emotional distress in the midst of survivorship is common, it's real, and it's treatable.

Resources for Emotional Support During and After Transplant

30:15   So before we go to the Q&A, I just wanted to highlight a number of resources. First, I want to point you to, of course, the BMT InfoNet which you are all familiar with. They have fantastic support and resources. And I put their website here on the screen. Also, I wanted to highlight NBMTLink, excuse me, another fantastic BMT organization that has so much to offer in terms of support for patients in survivorship and all along the treatment continuum.

And then lastly, I just wanted to give you a little bit of information about the Be The Match Patient Support Center. We have BMT patient navigators who can provide you with confidential one-on-one support, information and resources. We also offer one-on-one counseling, support groups, financial grants, and caregiver support. And all of our resources are free and available to people at any point along the transplant continuum. So, with that, I will open it up to questions. Again, I thank you so much for your attention and I look forward to continuing the discussion today.

Question and Answer Session

31:16     [Moderator] Thank you, Katie. That was an excellent presentation. We will now take questions. As a reminder, if you have a question, please type it into the chat box on the left side of your screen. Our first question is, how long do people experience these highs and lows post-transplant?

31:38     [Ms. Katie Schoeppner] Thank you. That is a fantastic question. And with many questions like that, it doesn't have an easy answer and depends on a lot of factors. One thing I will say, and this is interesting, and there's research to support it, much of the time, patients themselves find relief from emotional distress post-transplant more quickly than their caregivers. So typically, caregivers see an increase in things like anxiety and depression a little bit later in the continuum than patients do. So, I say that to call attention to emotional distress for any caregivers on the line. Sometimes people who are providing care to a patient are very focused on what they need to do and the practicalities of caring for the patient early on post-transplant, and then the emotional burden starts to hit later, even six months down the line. So, I want to point that out.

And then in terms of kind of a timeline for patients and the emotional roller coaster, it really depends. It depends in large part on what is happening medically for the patients. So, patients who are struggling with GVHD, and might be dealing with new diagnoses and new treatments well in the first time and even the second year post-transplant, it's a longer period of time where there's more ups and downs. Typically, though, it smooths out over time. So, I think as far as expectation setting, it's important to know that those ups and downs are going to continue, they're going to get less, the peaks are going to get a little lower, though, over time too. And that line is going to kind of smooth out.

And the most important thing, as I was mentioning in the presentation, is really just paying attention to the signs and symptoms of emotional difficulty, and addressing them early on, and not being afraid to step forward and say I need some help. I need some help with mental health, emotional health. I need potentially medication or counselor and addressing them early. I think that is going to change the trajectory for a lot of people by doing that assessment and reaching out for help sooner rather than later.

34:04     [Moderator] Thank you. Our next question is, are there specific support groups for transplant survivors? And if so, how do I find them?

34:16     [Ms. Katie Schoeppner] Great question. So yes, there are, and they come from a variety of different places. What I can absolutely speak to is that Be The Match through our Patient Support Center has a telephone support group for survivors offered every month at three different times. So, you can get information about that by going to the website shown on the previous screen, bethematch.org. Those groups are really peer support groups. So, they're facilitated by a professional at Be The Match, either a patient navigator or social worker, and there's always a particular topic each month relevant to survivorship. People call in and have a conversation about that topic.

So, it's being able to express what's going on with you as a patient, and share that with others, and then get support from other people who are going through the same thing. So those are called our Survivorship Chats. You can find information about them on the website. And then other organizations also offer various kinds of support groups. Some are telephone support groups like the Be The Match one, some are online. So, I would absolutely go through to the links provided.

And then the other thing I would recommend is contacting either your transplant center, if you live near it, or if you don't live near your transplant center, but live near a different one where you didn't have your transplant, maybe contact that center and see if they run any support groups. My guess is that right now there aren't any in person support groups being offered, but potentially some online options as well. I don't know if Marla or Cindy from BMT InfoNet have any further information about other groups that are available.

36:21     [Moderator] I will say, thank you, Katie. For those of you that are on this call, we are going to be having some support networking groups next week. So, if you have signed up for them, you will be getting information. So that is something that will be coming up next week.

Next question would be all the emotional aspects you spoke of were there and seemed to be much easier to deal with. But now with the quarantine due to COVID, it is harder to deal with, and it's just being put on the back burner by my medical team. What is your suggestion for handling this?

36:59     [Ms. Katie Schoeppner] That's a really good question. I know I mentioned it briefly. But I think the intersections with the pandemic and COVID-19 are making everything harder right now. Number one, the pandemic is affecting the entire population. So, it's putting stress on our family members and friends, it's putting stress on the doctors and nurses and medical system that cares for us. And so, it is really this overlay that makes everything more difficult. I think a couple of things. I think in the midst of the pandemic, it's important to kind of adjust expectations and adjust how we respond to emotional difficulties. It takes a little more creativity.

Some of the things that we maybe would have done in the past to help, we can't do anymore, such as going to see an in-person therapist. So, it's really figuring out how to get the help we need, even when we can't do it exactly the way we used to.

As far as potentially providers not having the bandwidth or attending enough to the emotional health because of concerns about physical health related to COVID, I think it is one of those opportunities to really continue to advocate. And that's hard, but it is important. It could be as simple as starting an appointment with your transplant physician or whomever is providing your care by saying, I'm really struggling emotionally right now, and I know we have a lot to cover. And I know COVID-19 is a really important topic and we might need to talk about how I'm staying safe in that way. I want to make sure we have time to address my emotional help needs. So, can we be sure to stop? Whatever. We're talking about 10 minutes sooner so we can talk about that or something like that I think can be important.

Impact of COVID 19 on stem cell transplant survivors mental health

The other thing I just want to mention regarding COVID is I've had a lot of interesting conversations with transplant patients about the impact of COVID-19. So, for some people, they feel sort of like, well, as a transplant patient, I know how to deal with isolation. I've been wearing a mask for months. None of this is new. I'm an expert, essentially, at managing because I live as an immunocompromised patient. Some people feel that it's almost helpful now that the rest of the world is living more virtually and friend groups are getting together online versus in person, so it can have that advantage in kind of an interesting way.

And then there's the other aspect, which is COVID-19 is in additional and very serious and very scary threat for BMT patients who are immunocompromised, and it affects how patients engage with the world. And it means that sometimes appointments can't happen because there's a reduction in in-person appointments and our health care centers are greatly impacted. So, there's a lot of complexity around that issue. And I think at the end of the day, it is just all that much more important to attend to emotional health in the ways that you can. And to put out there for your providers the needs that you have to address those questions and concerns.

41:03     [Moderator] Thank you for that. The next question is, I am three years out and dealing with level four GVHD of my eyes. Do you have a tool for me to refocus getting back into my life?

41:21     [Ms. Katie Schoeppner] Thank you for that question. I think GVHD of the eyes is actually one of the more complicated side effects that that people deal with because it often causes a level of disability that's pretty unexpected for patients. I will say as far as a tool, I don't necessarily have something specific, but I think not knowing how severe your particular GVHD is or how much it's affecting your vision, there are some kind of tips and tricks that I think can be helpful.

Number one, it can really become important if your vision is reduced because of GVHD of the eyes, to do everything you can to tap into other senses. So, if vision isn't as clear or as good as it once was, it can be helpful to kind of figure out other tactile ways to increase the central sensories, experiences that aren't related to vision. So, doing things like being in a warm shower or smelling something that's really pleasing, like a candle. Those are sort of simple things from a sensory perspective that can be helpful.

As far as vision, I think sometimes just making sure that adaptations are in place to help with the level of vision can be important. Also, just ensuring that you're having conversations with your physician about all types of treatment that might help with GVHD of the eyes. I'll also mention before I wrap up, the Be The Match does have some very specific GVHD factsheets, and we do have one on GVHD of the eyes and that can be a good starting point for figuring out what might help in dealing with that particular symptom.

43:46     [Moderator] Thank you. Can you recommend where to find a good telehealth counselor? I live in a smaller town where a quality counselor is hard to find and want to go to someone who doesn't know everyone that I know.

44:04     [Ms. Katie Schoeppner] That is a really good question and that's such a tricky thing, especially in small communities. So, I will mention that Be The Match has counseling services that are available to people anywhere across the country. We have licensed clinical social workers and staff who provide counseling free of charge through our Patient Support Center. And it's very similar to what you would receive if you saw an in-person counselor in your community. Our social workers have an intake process. And if they find that it seems like a good fit for you then they go through an informed consent process with you over the phone, and then set up regular weekly appointments, typically 50 minutes sessions each week.

It starts with psychosocial assessment which is just an assessment of what your needs are. And then based on that assessment, the social worker will work with you to determine goals for counseling and what things will look like in those sessions going forward. So that's a great resource that's right there in my organization and would be available to you. I think the advantage of that is that the social workers are going to be looking through the lens of bone marrow transplants and doing that work with you, Having the experience of working with many bone marrow transplant patients or caregivers.

The drawback of a service like that is that we are not diagnosing mental health disorders and treating them specifically, so if that's the kind of thing you're looking for, then a program like ours wouldn't be able to meet that need. And with that, I think I would probably go with some of the recommendations earlier in the program if you are looking for someone to diagnose and treat a mental health disorder to talk to your transplant physician or your primary care provider, and explain that you're looking for a therapist, but might not want to see anyone in your immediate area. And could they make a recommendation.

I think nowadays most people are practicing over the telephone or using video conferencing, so the geographic barrier is reduced, which is nice. But again, it's important to make sure that if you're going to be using your insurance that you look at your insurance network and what's in that. That can be the first step to go to your insurance web page or call them, indicate that you're looking for a therapist and get a list of people that you can maybe call and do some inquiries with. But I would definitely encourage you to check out the Be The Match counseling services and those are free of charge. Those don't utilize insurance. That's just a free service through our Patient Support Center.

47:04     [Moderator] Thank you. Next question is, I am 19 and a half years post-transplant and have trouble knowing how much to plan for the future as an adult. I'm 31. How do I know what's reasonable to plan for and how can I tell if anxiety is affecting my judgment about long term future plans, i.e. parenthood?

47:26     [Ms. Katie Schoeppner] Well, first of all, congratulations on 19 years post-transplant. That is incredible. I think it is a fantastic and complex question to think about planning for the future. What I would say is that there is undoubtedly uncertainty in the future, especially for BMT patients. There are a lot of unknowns in terms of could my disease come back. Could I run into a complication that would alter my life significantly or limit my life or end my life sooner? That being said, that uncertainty goes both ways. In addition to saying, could my life be shortened? Or could I have an unexpected complication arise? The flip side is, could I live to be 80? Could I be healthy for the rest of my life?

So, if you think of uncertainty in those two realms, rather than just focusing on the potential negative complications or things that could arise, I think in that there's a lot of room for hope and room for planning. So, I would say it's important to balance both of those sides and to allow yourself to think about what you want out of life. And if that's children, then I think it's absolutely reasonable to start considering what that might look like and how you would build a family, and talking to your physicians if indeed they need to be involved in that process using in vitro fertilization or adoption or a surrogate or whatever that might look like. So, I certainly would advocate for planning and dreaming and thinking about the future. I don't necessarily think that it helps from an emotional health perspective to limit planning, to limit dreaming and setting goals and even starting to move forward.

50:01     [Moderator] So the next question is, I am three years after transplant, do you think I need to worry about emotions?

50:09     [Ms. Katie Schoeppner] I don't know that I'd say you need to worry about them. I don't think I would necessarily encourage that. I do think it's important to be aware of potential emotional difficulties no matter where you are, post-transplant. So three years out or like the last question, someone who's 19 years out, I think it's always important to attend to emotional health and pay attention to if you're feeling joyful and happy and engaged and in control, or are you feeling anxious and tense and down? I think it's really important to attend to those emotions no matter what. It's not to say that it is concerning if you're not having emotional difficulty. Some people do really well from an emotional standpoint and have a high level of resilience.

So, if you're feeling good, that's something to celebrate. It's something to acknowledge and feel good about. At the same time. It's always important to continue to do that assessment because if things do change and things become difficult, then it's an opportunity to get some help to employ some strategies like the cognitive restructuring that we talked about are other methods of intervening in order to feel better. So, I would advocate that no matter how far out from transplant you are, being aware of how you're doing emotionally is only going to help.

51:58     [Moderator] Thank you very much. Our last question is going to be, what is the good way to deal with a BMT survivor spouse who has made a life of being unemotional and never likes to be vulnerable? Two years out, I am dealing with a lot of cognitive disorientation in his behavior. What do I do?

52:23     [Ms. Katie Schoeppner] Yeah, relationships are really tricky, post-transplant. If I'm understanding your situation correctly, it sounds like this is a partner who was also a caregiver. And it's complex to work together because each individual manages emotion, manages difficult situations differently. And yet, as partners or spouses, you're very much interconnected. So, I think number one, communication, trying to communicate with your partner and expressing what you're feeling and what's difficult for you in kind of interacting or trying to have conversations.

I think when it comes to partners and couples, one of the one of the best approaches to communication is to make sure you focus on using I statements to make it easy to tell people that their behavior isn't working and that they're doing something wrong. It can be a lot more powerful to say, I'm really struggling right now. I'm wanting to know how you're feeling, I'm wanting to have a conversation about emotion, and I'm wondering if you'd be willing to do that? Something to that effect, but always really starting with I statements.

It can also be helpful to ask about that person's willingness, your partner's willingness to see a counselor or a therapist. Sometimes having that outside party can really help to elicit emotions and to kind of dig in and start having those conversations. Sometimes partners just need that third-party in order to unlock some of the communication. And then the last thing I will say is, it's really helpful to make sure to focus on your own emotional health even as someone else in your life a partner or otherwise maybe isn't giving you everything you need or isn't engaging in their own emotional health in the way you want.

It's really important to continue to make sure you're doing everything you can to be as healthy and as emotionally grounded as possible. And that ultimately, hopefully will make it easier to engage in that communication and in that relationship. So, definitely care for yourself. Take care of your own emotional health first and foremost.

55:31     [Moderator] Thank you, Ms. Schoeppner. Those were wonderful answers to all the questions. On behalf of BMT InfoNet and our partners, I would like to thank Ms. Schoeppner for her very helpful remarks and thank you the audience for your excellent questions.