Managing Emotional Challenges after Transplant
Sunday, April 18, 2021
Presenter: Harold Dean, LCSW, OSW-C, University of Arkansas for Mediclal Sciences
Presentation is 36 minutes long with 20 minutes of Q & A.
Summary: A stem cell transplant can be emotionally challenging and disrupt normal life and relationships, at least for a time. Acknowledging these challenges and cultivating social and professional support can help restore emotional health. This presentation describes common emotions patients feel after transplant and some effective methods for coping with them.
- About half of all cancer patients report feeling emotional distress at some point during treatment and recovery.
- Emotional challenges can be greatest when treatment ends. Family and friends often expect everything to “get back to normal” right away. It is important to let people know about ongoing needs even after medical treatment has ended.
- There is a difference between occasional depressive feelings and ongoing clinical depression. Medication or counseling may be needed to diagnose and effectively treat clinical depression.
(03:12) Patients often describe cancer as a “whirlwind” that has ripple effects that overflow and impact many areas of our lives.
(05:29) The mind-body connection means that maintaining our physical health with good nutrition and exercise is important in managing our emotional health as well.
(09:21) Exercise has many benefits. “Spending energy to get energy” means that exercise can reduce fatigue while also reducing stress.
(13:09) There are many tips for good sleep hygiene that patients can use to improve sleep and reap its full benefits.
(17:00) Common emotions after transplant include depression, loss, grief, fear, anxiety, and guilt.
(23:14) Cancer diagnosis and treatment can alter our roles in intimate relationships and their emotional dynamics, but effective communication about them can draw people closer together and strengthen the relationship.
(26:22) Clear, open communication with one’s children is also crucial. Children are good observers but poor interpreters so explaining one’s cancer diagnosis and treatment in language they can understand is important.
(30:42) Fear of cancer recurring is common but worrying about it is debilitating and can sap our energy.
(31:22) Living one day at a time can be an effective antidote to ongoing fear and anxieties. Mindfulness, journaling, and engaging in favorite activities are good techniques for living in the present moment.
(33:48) Understanding your diagnosis, relying on supportive people and belief systems, and organized support groups can all help meet the emotional challenges of having cancer.
Transcript of Presentation:
(00:01) [Marcia Seligman] Introduction. Hello, everyone. My name is Marcia Seligman. Welcome to the workshop, Managing Emotional Challenges After Transplant.
(00:08) It is my pleasure to introduce, Mr. Harold Dean. Mr. Dean is the social work program manager at the University of Arkansas for Medical Sciences. He has worked as a social worker in adult oncology for 28 years, primarily with blood cancer patients. He has also served as the co-facilitator for the Little Rock Arkansas Blood Cancer Support Group for 10 years. Please join me in welcoming our presenter, Mr. Dean.
(00:40) [Harold Dean] Overview of talk and learning objectives. Well, thank you, Marcia. And I would just like to, before I begin, thank BMT InfoNet for the opportunity to be a part of this conference. I would also like to thank each of you for attending this presentation today. I know that you had a choice of how to spend your time this Sunday, and you've chosen to spend it with us here at BMT InfoNet. So, thank you.
(01:05) As Marcia has already mentioned, the title of this presentation is Managing Emotional Challenges After Transplant. And my hope is that wherever you may find yourself today, be it preparing for a transplant, having recently completed a transplant or maybe you're several years or even many years out from a transplant, I hope that you will find the information which is shared today to be useful.
(01:36) We have a couple of learning objectives that I want to touch base about today. What we hope that you will get out of today's presentation is that you will be able to identify some of the common emotional challenges after transplant. Also, we hope to talk about strategies for helping to manage those emotional challenges, to understand the differences between emotional distress and clinical depression, and also to identify different forms of emotional support that are available to those people who are undergoing transplant and transplant survivors.
(02:18) Okay. I love this slide. To me it symbolizes people on a journey. And while they all may be headed on the same path, the way that they perceive or interpret that journey will be different. Your cancer journey will be different and unique. A person's age, gender, ethnicity, relationships, religious beliefs, and life experiences will impact how they process and emotionally respond to the challenges that cancer and a transplant brings. So, you may find that you have some things in common with other transplant survivors, but there may be some things that are unique to your journey.
(03:12) Cancer as a whirlwind with ripple effects. When I am speaking with patients, I often ask them, "What has the experience of being diagnosed with cancer and going through a transplant been like for you?" And the response that I hear a lot is, it's been like a whirlwind. As probably each one of you can attest to, after a cancer diagnosis, things all around you can start moving pretty quickly. And that whirlwind can impact, not only your physical health, but also other parts of your life as well, your employment, your finances, your family, social relationships, and of course, your emotional health. Cancer has a ripple effect.
(04:00) And speaking of ripple, a single drop of water can be a very small thing, but that single drop of water, when it falls into a glass of water, it causes a ripple and it can cause the contents of the glass to overflow and spill out. And our attitude is like that also, it has a ripple effect that can overflow and impact all areas of our life.
(04:30) Being mindful and positive. So, it's important to be mindful of your attitude and to try to stay positive when you are dealing with the cancer, when you're approaching a transplant or even dealing with the after-effects that you may be experiencing with a transplant.
(04:50) Half of cancer patients report emotional distress. About half of all cancer patients report feeling some emotional distress at some point during cancer treatment. Certainly, the more that a patient can maintain a positive attitude, it will help them in coping with their cancer diagnosis and treatment. And in addition to having a positive attitude, I hope to touch on some other coping strategies that can impact how you process and emotionally respond to the challenges that cancer and stem cell transplant can bring.
(05:29) The need for good nutrition to fuel the mind-body connection. All right. No discussion about coping with cancer would be complete without addressing the mind, body connection. Our brain is the center of our thoughts and our emotions. And of course, our brain is part of our body. So, to keep our brain in good shape, we have to fuel our body with good things and get proper amounts of exercise and rest.
(05:55) And talking about fueling our body, I want to be clear that I'm not a dietitian, and nutrition is certainly not my area of expertise, but it is important for us to review a few of the basics of good nutrition. A healthy diet should include carbs, things like whole grains, fruits, and vegetables and beans. And we would encourage you to choose the lean proteins like fish, poultry, nuts, beans. The CDC recommends that adults eat at least one and a half to two cups of fruit per day, and two to three cups of vegetables.
(06:36) Awhile back, I saw a program on television where a gentleman was actually in his doctor's office, and the doctor was asking him about his health habits, and was assessing his health behavior. And he said to him, he said, "Okay, well, how much are you drinking? Are you staying hydrated during the day?" And the gentleman said, "Oh yeah, I drink about four or five Cokes a day. I want to keep hydrated." And the doctor was like, "No, no, no, let me explain something. Caffeine does not hydrate. Caffeine dehydrates." And so, water really is the best thing to use for us to quench our thirst. And you want to try to avoid sugary drinks. So, make sure that you're getting appropriate amounts of water as well.
(07:28) Okay. And talking about some other dietary recommendations that we want to address and talk about. Calcium is important, not just in dairy products, but also in things like green, leafy vegetables, dry fruit, almonds and canned salmon. You want to limit your salt intake because increased sodium levels are associated with hypertension, or what's commonly known as high blood pressure, kidney disease, headaches and strokes. And those are just a few of the things that we could name that are increased with high or increased sodium intake.
(08:11) Risks of alcohol use. Also, too much alcohol can cause hypertension as well and can contribute to stroke, heart disease. And it's been shown to be associated with cancers of the breast, mouth, throat, liver, and colon. And of course, we all know that with too much alcohol can also have some very detrimental effects to one's emotional, as well as to some of the psychosocial aspects related to their life.
(08:45) Consulting a dietitian. If you are interested in the possibility of maybe talking with a dietitian about your diet and maybe looking at ways to try to have a healthier diet, that is actually a service that is available free of charge through the Leukemia and Lymphoma Society. And so, if you think that that's something that you would be interested in, you may want to reach out to the Leukemia and Lymphoma Society for a little more information about that.
(09:21) The benefits of exercise. Okay. And as the slide earlier already touched on, exercise is certainly an important part of the mind, body connection. But we do want to make sure that if you are not currently in an exercise program or an exercise regimen, and you're thinking about starting one, you always want to consult your doctor before beginning any type of exercise program.
(09:51) There are many physical benefits to exercise. Our bodies were made to move. And without that, sometimes we become stiff and sore. And physical energy is a very interesting dynamic. Sometimes we have to spend some energy to be able to get some energy.
(10:10) Spending energy to get energy: exercise can reduce fatigue. And sometimes when I talk with patients and they tell me that they're tired and fatigued, oftentimes I will ask a little bit about, "Are you doing any type of exercise? Are you getting any type of movement?" And sometimes they patients may look at me a little strange and go, "But don't you understand I'm tired and fatigued." And certainly, I realize that there is a very delicate balance there to that. But we do want to be aware that there is that dynamic of having to spend energy sometimes to get energy.
(10:51) Exercise can reduce stress, anxiety and depression and improve sleep. Exercise is also very important in maintaining strength and balance, and it's good for both physically and mentally. And some of the emotional benefits of exercise are that it can help to reduce stress and anxiety.
(11:10) For some people when they exercise, they may find themselves thinking through some of the situations that they are faced with. And that is a time when they are able to mentally process things. For other people, it may be that exercise is a way for them to actually turn off their concerns for awhile to maybe get away from some of the things that are prevalent on their mind.
(11:43) Exercise also releases natural occurring chemicals in the brain, such as endorphins, to help fight off or reduce depressive feeling. And exercise can help with sleep as well by reducing the amount of time that it takes to fall asleep and to decrease the amount of time that a person lies awake in bed.
(12:09) Now, of course, a safe exercise routine should take into account your individual health concerns and limitations. And that's why it's important to consult your doctor before beginning any exercise routine. The CDC recommends 150 minutes a week of exercise. I know that that sounds like a lot, but really that's just 30 minutes, five days a week, or just slightly over 20 minutes, seven days a week. But maybe you're at a place where you think I can't even begin to think about doing some exercise for 20 minutes a day. You know what? Then that's okay too. But just remember that some physical activity is better than none. And a good goal is to move more and to sleep less.
(13:09) Tips for good sleep hygiene. Sleep, sleep is that other part of that mind, body triad that we talked about, that the slide mentioned earlier. And sleep is our body's way of restoring itself. It allows us to relax from the physical and emotional challenges of the day. And it's recommended that we get seven to eight hours of sleep a night.
(13:32) Also, we would encourage you to practice good sleep hygiene. And you may be sitting there thinking, "What in the world is good sleep hygiene? Well, I'm glad you asked. So, let's talk about that.
(13:45) So, some tips for a good night sleep, I've already mentioned exercise, but I would encourage you to try to de-stress before going to bed, maybe take a relaxing bath or reading a book, or listening to calming music. Having a set time to go to bed at night and a nighttime ritual, will also help to train your brain that it is time to wind down and to fall asleep.
(14:19) Also, you want to try to unplug from any electronic devices before getting into bed. We know that so much of our lives today is involved with cell phones and I-phones. And we have all these kinds of electronic devices that seem to be very prevalent in our lives. But actually, there's been some research that's been shown that the light from those devices, also the light from television, that those tend to have more of a stimulatory effect. And so, the more that you can try to de-plug from those and maybe set those aside for a while before you get in bed, those will help.
(15:10) And I've known a few people that when they go to bed, they think, "Okay, well, I've got some things that I need to review for work, or maybe I'll go to bed and go through my mail." Or some things that really here again, can be more stimulatory and not really put them into that relaxing mode that you want before getting into bed and trying to fall asleep. So, you want to make sure to try to reserve your bed for sleeping and for intimacy.
(15:50) And it's important, you can't pour from an empty cup. And it's important for you to take care of yourself first. You can't meet the challenges, either emotionally or whatever they might be, if it's emotional, or if you're dealing with something with your family, dealing with issues at work, you can't pour from an empty cup, you got to attend to your own physical needs. So, make sure and do that.
(16:21) Maintaining physical health helps us meet emotional challenges. Now, these health behaviors that I've just talked about, I want to be very clear, I understand that they are not the answer to all of the issues or concerns that you may have, but they will help to stabilize your physical health and to reduce or eliminate some of the physical and emotional challenges that can occur from inadequate nutrition, inadequate exercise, and also a lack of sleep.
(17:00) Common emotions after transplant include depression, loss, grief, fear, anxiety, and guilt. All right. Some common emotions that are experienced after transplant. It is certainly not uncommon for someone to have some depression. And I am going to discuss that a little bit more in a few minutes. But a cancer diagnosis and transplant can certainly bring change. And some of those changes can be very obvious, like changes in employment or lifestyle. And you may feel a sense of loss or grief associated with some of those changes, especially if those are changes that are ones that have resulted in being a situation that continues. And so, people may have a frustration over kind of what their new normal is, what their new baseline is.
(18:05) Sometimes those changes may be the changes that people may experience, may be very obvious, but they also may be more internal and emotional, like having frequent anxiety about the possibility of your cancer recurring, or feeling guilty that you survived your cancer, but a neighbor or a friend, or a relative, or maybe someone that you met at the cancer center where you've been treated did not survive there. So, you may have some guilt related to that.
(18:43) Emotions may surface more strongly when treatment ends. Sometimes, also, some patients may be so focused on doing all the things that are necessary for treatment, and they stay busy getting to the next test or maybe they have to readjust their schedule in some ways. Whatever the things are that they've got to do to be able to get to their treatment and to comply with treatment, they stay so wrapped up in that and so busy with that because medical treatment really does become the focus of their lives. And while they're doing that, a lot of times they're pushing those thoughts and feelings away and not dealing with them. And then when treatment ends and all that constant activity ends, then those thoughts and feelings that they've been pushing away can rise to the surface, and they begin processing them. So, they can have a delayed reaction to their diagnosis and treatment. And for some people that's really a strange phenomenon because they think, "I've completed treatment and I'm at a place right now where things should be going great for me. And why am I now feeling all this?" And it's because they pushed those feelings down for a long time.
(20:08) Sadness may occur when other people expect the patient to “get back to normal” right after transplant. All right. Some other common emotional problems that people may have. Folks who have gone through transplant may be experiencing sadness because maybe their friends don't understand their ongoing challenges, especially if a person has had a transplant, they're on the other side of transplant now, people may expect you to resume your normal activities once you come home. And they think, "Oh, well, the transplant's over with, they should be going back to life as it was."
(20:51) Also, once sometimes people get through a transplant and the transplant is over, you may see that people may not being so eager to help, or people may not be as forthcoming with help. And that eager wasn't really the best word, but maybe they're not so forthcoming with their help. And so, and yet you as a transplant survivor may still need some help. You may still need some assistance.
(21:30) Letting people know the help you need throughout recovery. If that's something that you're dealing with, my thought or my suggestion to you would be that, I think it's really important for you to be able to let folks know how they can help you. That that's an opportunity for you as you talk with them to let them know, "Hey, even though I am on the other side of a transplant and I'm doing a lot better, I'm still needing some help with certain types of things." And sometimes people may be reluctant to offer because maybe they don't exactly know what type of help or assistance you need. So, that's an opportunity for you to let other people know, and to express those needs and to make them aware of how they can best help you.
(22:21) Also, sometimes people may actually withdraw a little bit because they're not interested in socializing post-transplant, because maybe they want to get their energy back, and they feel like, "I'm not ready to do that just yet." So, those may be some things that may be occurring as well.
(22:51) And I would say to you that if you are having some of these feelings of sadness about not feeling that people are understanding some of the ongoing challenges from transplant, or if you feel like you need emotional support, support is available, it is out there. And we'll talk about that in a few minutes.
(23:14) Cancer diagnosis and treatment can alter our roles in intimate relationships and their emotional dynamics. One of the things that I didn't put on the slide, but I think that it is certainly very important, and I think that it does warrant me saying a few things, is that sometimes a cancer diagnosis and treatment will change the dynamics of a marriage or relationship. And if a cancer survivor has to stop working or maybe reduce the number of hours that they work, if that person was previously the primary earner in the relationship, that may mean that their spouse has to make changes to their work to offset the decrease in the family's income. Or if a transplant survivor has some physical limitations or a dramatic change in their physical energy as a result of treatment, some of the roles that people in the family may have played may need to change. And certain practical day-to-day tasks that the survivor previously did on a day-to-day basis, may now need to be reassigned to other family members. And sometimes these shifts in roles may be only during the time of treatment and are temporary, but sometimes those changes may be permanent, like I was mentioning earlier about having a new normal.
(24:40) Communication is important; not talking about a problem gives it power. And sometimes for many different reasons, there may also be changes in the emotional dynamics of relationships. And changes may occur in the way that spouses and family members relate to each other after a cancer diagnosis. And if this is something that you are dealing with in your relationships, the key to being able to make it through that situation is communication. There is no replacement for talking and listening to each other's thoughts and feelings about the changes in the relationship. When you don't talk about a problem, you give it power. And this thing, this problem that is affecting the relationship or relationships just grows bigger. And it takes on more energy, very much like the elephant in the room that nobody talks about. But if you can talk about something, you minimize that power.
(25:44) Working through emotions can make relationships stronger. Sometimes families may be able to talk through these thoughts and feelings among themselves, but sometimes it may be advisable to speak with a social worker or a counselor to help navigate through the situation. And while it may not always be easy to work through those emotions, I will tell you that many of the couples that I have seen over the years have told me that dealing with the cancer experience and working through the challenges related to transplant has actually drawn them closer to each other and made their relationship stronger.
(26:22) Clear, open communication with one’s children is also crucial. Also, for families that have children, children and grandchildren may also be affected by a family member's diagnosis of cancer. And so, it is important to watch for any emotional or behavioral changes that might occur.
(26:38) If you do have children in the family, it is important that you be open with them about the cancer diagnosis and not try to hide it. Children are good observers, but they're poor interpreters. And they will either know that something is different because of the obvious physical challenges, or they may sense that something is different. However, they may attribute that the cancer or the changes that come with the cancer may be because of something that they did. They may think that their family member's cancer diagnosis is a punishment for something bad that they did. And here again, communication is very important. It's important to talk with them about a cancer diagnosis in a language that they can understand.
(27:25) If you think that you might need some guidance on how to have these conversations, there are many different books that are out there, children's books, like When Your Mom Has Cancer or When Someone You Love Has Cancer. But there's also a wonderful book by Dr. Wendy Harpham called, When a Parent Has Cancer. That is a book for adults, and it gives guidance on how to have those conversations with children of different ages.
(27:56) Distinguishing depressive feelings from clinical depression. I touched on earlier about depression. And so, we want to talk for a few minutes about depression or depressive feelings versus clinical depression, because I think that it's important to have a good understanding of that.
(28:11) And so, with depressive feelings, most people will experience some depression at some point in their life. Whether they have cancer or not, most people are going to have some depressive feelings. But it's important to be able to differentiate those types of feelings versus a clinical depression. With depressive feelings as I said, it's very fairly common in the general population. And the duration of the feelings can be very short-lived. And it may be that someone may have some depressive feelings for a day or two, or maybe even for a week or two, but then those will subside. And typically, they don't significantly interfere with a person's normal functioning. And those feelings will either go away or certainly decrease when people use some intervention for dealing with that.
(29:11) Clinical depression has physical as well as emotional effects on people. But with a clinical depression, you can say usually clinical depression will have not only an emotional aspect, but it can also have physical consequences as well. People can have a reduced appetite and weight loss, because they're just not interested in eating. But it can also swing the other way, people can tend to eat more, to try to in some way sooth the bout, those depressive feelings. And so, they might have weight gain.
(29:40) Also, with clinical depression, usually taking any type of activity on, you have a lack of energy, and even small tasks can take effort. Oftentimes, people who are dealing with clinical depression will report slowed thinking or concentrating and difficulty making decisions. And the feelings don't let up.
(30:07) Medication or counseling can be helpful but you must seek it out. So, I would say to you that if you feel like that you have some of these symptoms, I would encourage you to talk with your doctor. It's not uncommon for cancer patients to experience depression. It's not a sign of weakness to ask for help. It's actually a sign of strength, and it shows that you're taking action to address the issue.
(30:25) Medication or counseling may also be needed to help the depression lift. And getting treatment will help you be better equipped, both physically and mentally, to do the things that you need to do for your treatment and recovery.
(30:42) Fear of cancer recurring is common but worrying about it is debilitating. Fear of recurrence is a very common emotion that people oftentimes experience. And so, the way that you deal with the fear of recurrence is you understand that you're going to have a long-term relationship with your oncologist, and you want to make sure that you are being diligent in following up with your oncologist. Also, you know your body better than anyone else. You live in your body, 24/7. So, as you experience different things, or if there are things that are of concern to you, be sure and follow up on those health issues, and be your own advocate. Don't be afraid to speak up.
(31:22) The importance of living one day at a time. Also, the other thing, and I know this sounds very, very trite, but try very hard not to worry about something, until you have something to worry about, until you know for a certain that your cancer has come back. Try not to worry about that. Because you know what? Worry is like a rocking chair, it'll keep you busy, but it won't get you anywhere. And in the meantime, what will have happened is you will have tied up all your emotional energy in that worry. And of course here, again, sounds very cliche, but really try very hard to live your life one day at a time to deal with the challenges and the things that are coming at you today, and not to live with the concerns of tomorrow.
(32:08) Mindfulness, journaling, favorite activities can all help. So, what are some of the coping techniques that you can use to try to help with some of the emotional challenges that you 're feeling? Certainly, we've talked about exercise, but also mindfulness and guided imagery. Those are really wonderful techniques.
(32:25) Mindfulness is certainly something that's very much talked about and used in so many cancer centers. And there are all kinds of opportunities to do that. There a number of different CDs, MP3, apps. There's an app called Insight Timer. There's also an organization that puts out guided imagery called Health Journey.
(32:53) Journaling and creative writing, those can also be very, very helpful ways. I had a patient one time who said, "I don't want to journal, but you asked me to do that." And she said, when she came back the following week, she said, "I started journaling and I was just amazed at how much it really helped me." So, even though that may not seem like it could be helpful, for many people, it really is.
(33:20) Also, maybe doing a favorite activity. Maybe you have had an activity in your life that you are no longer able to do because of some of the results of a transplant. But if you can do that in a different way, maybe by supporting that, or watching that, being an audience, a person who's in the audience and in cheering those people on. That's great. Maybe looking at new hobbies, also volunteering.
(33:48) Understanding your diagnosis: knowledge is power. And the other thing with coping is that knowledge is power. The more that you can understand about your diagnosis, treatment, and then some of the residual things that potentially could happen as a result of your transplants and things for you to be on the lookout, the more that you know about that, the better equipped that you are to deal with those.
(34:12) Relying on supportive people and belief systems. Also, here again, some additional strategies for coping. It's important to create your tribe. Use the skills of other people in your life to help you when you need help. For many people, prayer and spiritual support is a guiding thing for them. Prayer and spiritual support may not necessarily be related to any type of religious experience, it's just, you're meeting your own spiritual needs and feeding your spirit. But certainly sometimes for people who are involved in organized religion, that can bring great help to them as well.
(34:48) Also, there are support groups, both in-person and online, and professional counseling. Here again, I've touched on just earlier, it's a sign of strength to get that support and to get the perspective of an objective professional.
(35:04) New priorities and unfinished business. And going forward, you may see that you have a shift in your priorities as your life changes. A lot of times people tell me, they say, "After a cancer diagnosis, I really learned what was important to me." And so, you may be at a place where you're seeing some of that.
(35:23) This is also an opportunity for you to take care of any unfinished business that you might need to do, be that unfinished business, be it emotional issues with friends or family, if that's healing relationships, saying things that you need to say. Or maybe it's things like making sure that you have your financial affairs in order, and that you have all of those things taken care of. Also, every day is a gift, live in the now, and do the things that are on your bucket list and make memories.
(35:56) So, now I'm going to show you my reference slide for today. And with that, I will move forward and we have a little bit of time for some questions.
Question and Answer Session
(36:11) [Marcia Seligman] Q & A. Thank you, Mr. Dean, for this excellent presentation. We will now take questions. As a reminder, if you have a question, please type it into the chat box on the lower left hand corner of your screen.
(36:22) The first question is, how do you deal with a situation post-transplant, where there are significant side effects that severely impact the quality of life for the long-term?
(36:38) [Harold Dean] Well, I think that with that particular situation, I think you have to look at what those actual issues are. And I think you have to look at the specific issues there.
(36:56) And so, first of all, I would say that that is an opportunity where you really need to be in very close communication with your doctor about what impact the residual impacts from treatment are causing to your life. And so, you want to make sure and do that. If it's something where some of those things that have impacted or changed your life, if they're causing you some emotional issues of really dealing with that new normal, and that that's very difficult for you to do, then here again, I think that's an opportunity to look at maybe some professional counseling in terms of how that you can try to make those adjustments and to deal with those. So, I think those are a matter of seeking consultation from the healthcare professionals that are out there.
(37:56) [Marcia Seligman] Okay. Thank you for that. The next question is, clinical depression looks exactly like symptoms caused by cancer or chemotherapy, which can go on for many months, please comment.
(38:12) [Harold Dean] Yes, certainly, there is some crossover there. And I think that if you are experiencing those things, if you're experiencing those feelings, and they do not seem to change with any type of intervention that you are doing, then it is advisable to you, I would say to you that you should be talking with your physician about that, to look at maybe some antidepressant. Because if a person is depressed, the thing that we want to make sure of, is we want to make sure that the decisions that they are making in their lives, that those are decisions that are being influenced, not by the depression, that depression is not causing them to act in certain ways or make certain decisions. And so, we want to try to look at ways that we can try to support that and to make that depression, at least to try to improve that, if not to try to help make that go away.
(39:24) Having said that, there is a large number -and I don't know the exact percentage, I can't quote it off the top of my head - there's a large number of cancer patients that are actually, while they are receiving cancer treatment that are treated with an anti-depressant medication. There's certainly no dishonor in doing that. So, here again, I think that's a conversation that needs to be had with your physician about that.
(39:53) [Marcia Seligman] Okay. The next question is, "I have used cognitive behavioral therapy tools to calm my anxiety and keep it under control, but I'm finding it difficult to control my anger post-cancer and transplant. Do you have any tips for dealing with bursts of anger?"
(40:13) [Harold Dean] Well, certainly, anger is one of those emotions that can be very distressing, not only for the person that has those bursts of anger, but because oftentimes afterwards, they might feel guilty at how that came out and if it affected someone else. But it can also be, it can have an effect on the people around you, and can have an effect on if people want to be around you, if that's occurring a lot. So, I think the fact that you're recognizing that and wanting to do something about that is very good.
(40:48) I will tell you that for some of the patients that I have dealt with, going back to journaling, I have to say that journaling has been very, very helpful for them. It provides an opportunity for them to be able to get those angry feelings out on a page. And when you journal, you don't have to worry about how your sentence structure is. You don't have to worry about how you're writing it. This is, when you're journaling it's for you. It's not for anybody else.
(41:22) And so, for a number of patients that I have worked with, to be able to have that journaling, it allowed them to be able to express that anger, and the frustration about whatever the situation was that's causing that, to be able to do that in a controlled way, and then to be able to sometimes come back and look at that weeks and months later, and to see where they were and how far they've come from those particular situations. So, first of all, I would encourage you to at least think about journaling.
(41:59) Also, here again, as I've previously mentioned, I think that i if t's guided imagery or meditation helps you, that if you want to try that, that may be an opportunity for you to look at that. Mindfulness is one of those things that certainly many people, here again, can talk about, or we'll talk about to be able to learn how to be mindfulness and live currently in the moment, to be present in the moment. That that can be very, very helpful in controlling anger as well. So, those were the two things right off the top of my head that I would encourage you to at least look at.
(42:43) [Marcia Seligman] Okay. The next question is, do you have any recommendations for how to encourage patients to take the one day at a time approach? I find that many have difficulty adopting that mindset. They can tell themselves that this is what they need to do, but they have trouble implementing it.
(43:03) [Harold Dean] Sure. And I realize that sometimes that is easier said than done, especially if you're in the middle of treatment, because sometimes it becomes an issue of, "Well, I can't just live today because I've got to do the things that I need to do to get ready for treatment for tomorrow." Or that sort of thing.
(43:24) But I think when we're talking about trying to take things one day at a time, it really goes back. Or where I was coming from, and what I said, was really to go back , when you have situations that you find yourself worrying about, if you can either... and sometimes one day at a time, maybe okay for the next hour, or maybe for the next 15 minutes. So, you may even need to break it down that way to be able to actually say, "Okay, for the next 15 minutes, I'm not going to be focused on that particular issue that's causing me concern." And so, it may be not just one day at a time, but the more immediate, the next 15 minutes, the next 30 minutes.
(44:19) For some people, the one day at a time may be a matter of also making a list of the things that they hope to accomplish that day, and trying to stick to that particular list, and not to worry about the things that have to come after that, but just to be focused on that particular day. So, those are a couple of things that I would recommend related to that.
(44:48) [Marcia Seligman] Okay. The next question is, "Although I am recovering, I feel like I am grieving what I have lost. Is this normal?"
(44:57) [Harold Dean] Absolutely. And thank you for that question. Certainly, dealing with changes in life can be very, very difficult. And I had a young woman who is in my support group, and one day we were talking a little bit about the changes that come with transplant. And I happened to reference the term, I said, it's like people have a new normal. And she spoke up and she said, "No, I hate that term." She said, because actually, she said, "Nothing is normal." She said, "My life has really changed for me indefinitely." And she said, "So, this isn't really normal for me. It's not really the norm for anybody."
(45:54) And certainly while I get that, and I understood exactly what she meant when she said that, the reality is, is that oftentimes people's lives do change and things may actually change significantly, where what a person had previously, what their life was like and how their life looked, and the things that they did, that those things have changed significantly.
(46:24) And I think the way of dealing with that of trying to deal with the newness of all of that, the things that you can no longer do, I think that's a process and there is not a one size fits all approach to that. I think that is a situation where you're having to learn to navigate that and to negotiate that every day. And here again, I think the way that you do that, the way you try to deal with that grief, the way you deal with any grief is to talk about it, to get those feelings out and to express that. And hopefully, that would be, maybe, with some trusted friends or family members or maybe through, like I mentioned earlier, journaling, but it may also be that you may want to seek some professional counseling for that too. And hear again, that's certainly something that professional counselors who've worked with cancer patients would be very versed in dealing with. So, those would be my suggestions relating to dealing with that newness and dealing with the grief over the things that have changed in your life.
(48:01) [Marcia Seligman] Okay. And then the next question is, will you comment on the impact of COVID-19 on the stem cell transplant survivors' mental health?
(48:15) [Harold Dean] I think there's probably a lot there. And I'm not sure that we really know all of that right now. Because I think that we're probably still really studying the impact that COVID-19 has on the cancer patient's health and how they are dealing with that. Certainly, I think there's a fear that's associated there. I think that's very natural, that with people who might have compromised immune systems, that they're going to be reluctant, or at least that they're going to be wary of social situations.
(49:05) And here again, I think that that is a situation where you have to talk with your physician, talk with your healthcare professionals, and just be very upfront and say, "These are the concerns that I am having. What steps, what precautions do I need to take in terms of protecting myself against COVID-19?"
(49:33) But I also think that, if your concern is about being around the others and being exposed to others, there are many different things that are out there to help with that right now. You can look at online shopping, having groceries delivered. There's all kinds of digital platforms that are available for people, through meeting, through Zoom, through FaceTime, through keeping family gatherings and family contact, and going.
(50:08) And if it's an issue of being concerned about being around other family members, who may not have been vaccinated, then it may mean looking at some of the family gatherings, their social activities that normally took place, to look at those in a different way, and to do those in a different way, maybe through some form of Zoom, or here again, FaceTime. So, I think it goes back to looking at the guidelines that your physician, that your health care team would put out to try to protect your safety, and to looking at other options for ways to have in interaction with other people.
(50:52) [Marcia Seligman] Okay. "Do you recommend a virtual support group? I am struggling to find a BMT group in my area."
(51:04) [Harold Dean] So, that is a great question. And I will tell you that as Marcia introduced earlier, I've been a facilitator for a support group for over 10 years now. And that group started out being an in-person group, very lively and dynamic group. And then of course, because of the pandemic, we had to go to an online forum. And I think that it's obvious that an online support group or a virtual support group, the dynamics for that are different. The emotional interaction is not the same as if you're sitting in a room with someone.
(51:50) But having said that, I think you get support from wherever you can get support. I think that's important. And so, I think there is an emotional benefit that can be gained from online support groups, that can be gained from virtual support groups. The goals are still the same but I think you'd get your support from wherever you can. And so, I would encourage you not to necessarily be dismissive of that. But it's like anything, I think you have to give it a try and see if it works for you. So, I would encourage you to at least consider that.
(52:35) [Marcia Seligman] Okay. "So, what are some tips to transition back to the workplace after being out of work, recovering for almost two years?"
(52:46) [Harold Dean] So, a couple of things related to that, and it's hard for me to answer that without knowing the person's specific type of work that they do, and to know all of the details surrounding that, but I would encourage you, as you begin to look at that, that you may want to make sure and look at what the ADA has to say, the Americans With Disabilities Act. You may want to take a look at that and see if there are perhaps some ADA accommodations that may be made for you to be able to help with that transition.
(53:41) And the other thing that I would mention related to that, is there is an organization called Cancer and Careers. They are an excellent patient education organization, and they actually give a lot of guidance about ADA accommodations, returning to work, and even if people may be looking at trying to find employment after a cancer diagnosis or after a transplant, how they can approach to job interviews, how they can build resumes. So, it's hard for me to speak in specifics about that, but I would encourage you to take a look at Cancer and Careers, because I think that they can provide you with some really excellent education information about that.
(54:35) [Marcia Seligman] Okay. This is going to have to be our last question, we're running out of time, but this question is, "What are your thoughts on melatonin as a sleep aid? I take five milligrams a night."
(54:48) [Harold Dean] Well, here again, I want to be very clear that I am a social worker. I'm not a doctor and I'm not a nurse. So, that really is the question that I think you need to speak with your physician about. For some people, melatonin has been helpful. For others, I think they've had limited success with it. But any type of medication that you're going to look at taking, be it a prescription medication or an over the counter medication, you always want to make sure and talk with your doctor about that first.
(55:53) With regard to the question earlier, I should have mentioned that in terms of support, the BMT InfoNet has a very robust Facebook page called Stem Cell Club. And so, that may be another way for someone to look at trying to get some support and to feel like that they're not alone, and to help them manage some of the emotional challenges that they're facing.
(56:28) [Marcia Seligman] Closing. Well, thank you so much for that, Mr. Dean. On behalf of BMT InfoNet and our partners, thank you, Mr. Dean, for your very helpful remarks. And thank you, the audience for your excellent questions.This article is in these categories: