Riding the Emotional Roller Coaster of Survival

Presenter:   ​Sameet Kumar PhD, Clinical Psychologist at the Moffitt Malignant Hematology and Cellular Therapy Program at Memorial Healthcare System

This is a recording of a workshop presented at the 2019 Celebrating a Second Chance at Life Survivorship Symposium, Orlando FL

Presentation is 47 minutes followed by 13 minutes of Q&A

Summary:

• Blood disorders and transplant involve intense psychological challenges that can persist for months or years
• The biggest psychological challenge is coping with uncertainty
• Diaphragmatic breathing and mindfulness can help calm distress

Transcript of Presentation

 00:00  Blood cancers are unique in the cancer landscape: I've been working in oncology for about 20 years, and it started when I was five, so it's not that long ago, I was working in a cancer center. I'm in South Florida, in Dade and Broward Counties. My first 10 years or so were mostly with solid tumors. For just about the past 10 years, I've been working more with the hematological malignancies.

There are some overlaps in there, but one thing that I learned very quickly, is that it's a very unique landscape. There just doesn't seem to be a whole lot in our culture about it. Nothing very supportive at least. Nothing that's really very terribly supportive emotionally about what it's like to go through a hematological malignancy, as a patient or a caregiver.

How many of you are... when they do cancer on TV or in the movies, it's done so badly. I don't even know if they've even tried to do anything, with the hematological malignancies on TV. This is kind of... it feeds into this general sense of just not knowing.

01:10  Coping with uncertainty is a challenge: There's a general theme that I've seen from the first day I set foot in a hospital, where people who had cancer were being taken care of. That's really the first thing that kind of screamed at me, as a psychologist in training back then - this was back in the '90s- the uncertainty is really the most important thing to cope with.

The uncertainty is the number one thing. It doesn't matter if it happens on the day of diagnosis, or if it's been 30 years since transplant, 30 years since treatment. The uncertainty becomes the main kind of uninvited house guest that refuses to leave and doesn't pay any bills. It becomes the main thing in people's lives. This emotional roller coaster of survival, it's really fueled by uncertainty.

I flew in last night and I was thinking, “God, Orlando, it's all theme parks.” I was thinking, “Oh, that's why they named it roller coaster."

Right, but I mean, there's this sort of, I think, uncharted territory, is the best way to put it, that most people find themselves in emotionally. As patient, as caregiver also and also as a family member, there're certain aspects of it which do become familiar, but what I've observed and what the research kind of supports, is that there's so much of it which is so personal, that I'm going to try to speak in terms of specific aspects of this; but there are going to be also very broad strokes which we're going to brush all these things with.

Now, one of the things that I have to inoculate everybody, when I speak about this kind of stuff, I don't want to be yet another speaker or yet another person who's going to pile on top of everything that you're hearing, what you should be doing

03:00  Telling people what they should and shouldn't do when they have cancer makes patients feel more isolated: Right, years and years ago, when I was in training in psychology, I became acquainted with a psychologist through his work - he had passed away long before - his name was Fritz Perls. One of the wonderful things that he said, one of my favorite sayings of his, is that you have to stop "shoulding" all over yourself. 

Right, sounds like something else, but because what happens is that, people are diagnosed with an illness. Bad things happen to us, not just necessarily cancer. I think people mean well, but they tell us all this stuff we should be doing, “Oh, you shouldn't be eating that. Oh, you should be doing this. Oh, you hould be thinking about this thing, you should be...” It just becomes like this overwhelming tidal wave of... I don't even know if it's advice. It's mostly suggestion, but a lot of it is really just defensive. Like, “If you do this, then I don't have to worry about you.” Right, like, “You're going to be okay.”

A lot of times what winds up happening, is that people wind up feeling more isolated, because thy don't want to do all that stuff, or they can't do all that stuff. Most of the time it's not really going to be as helpful, as people would like to believe it would be. That's the first thing I want to kind of present. Is that anything that I'm suggesting here, I don't want it to go on top of that pile of, “Oh, if you're having a hard time, it's a shortcoming on your part, or it's your fault somehow, because you didn't listen to my advice or you did it wrong," or something like that. It's so easy to kind of hit that switch, and I don't want to be the one hitting that switch.

These are all suggestions; and I think realistically when I'm talking to people in session or at the bedside, I don't expect them to pay attention to everything I'm doing. Well, this is a little different so please pay attention. Speaking of which, I'm going to turn my phone off, so it helps me pay attention.

I don't want this to be piled up on top of this list of ‘’you should do that,’’ “You have to be doing this.’’ If you don't do it, then that's why you're having a hard time.” I wish it was that easy. This is kind of the first thing that I want to emphasize. There are no magical silver bullets that, you do this one thing and it's going to be great. It doesn't really work that way.

 I think what we can all sort of try to have, as realistic goals, is this stuff can help. It doesn't help everybody all the time, but it can help a lot of people some at the time. By help, I don't mean it turns the distress from 100 to 0. Even if it goes from 100 to 95 or from 90 to 80, I consider that successful. Like there's no off switch for some of this stuff.

05:44  Fatigue after transplant is a complication people don't expect and have trouble coping with: There's a lot of unique things that happen in this kind of terrain. The issues that are related to survival from bone marrow transplant, be it allo or auto, the fatigue I think is the main one that people, don't expect the kind of fatigue that oftentimes accompanies transplant.

If you're months or years out, you know that some days it still kind of hits you, and it's kind of hard to explain it to people. This thing becomes part of your life and it changes things. I mean, there's plenty of people that I've met with, who've gotten transplants who are into athletics. They were doing marathons or half marathons. They were doing races and all this good stuff before, and they kind of go, “Oh yeah, I already signed up for this race at the end of the 100 days or something.” It's like, “Maybe, is it refundable?” Some of them will do it. They might get the bus at the end of the race that picks people up, if they're going too slow.

The fatigue is really, really hard to describe, but what's really hard to describe, is that even months or years later, it can just sort of hit as a wave for no apparent reason. Like you didn't really overdo it before. You didn't do something wrong. It's not your fault, so the fatigue is one part of it.

07:15  Issues that come up after transplant, like chemobrain, are not well researched: All of this stuff that we're describing, you hardly will find a whole lot of research on it. I mean, if you want to get into molecular genetics and chemotherapies, there's volumes and volumes. You could probably fill up this whole room with the publications that are on there.

When it comes to everything that's listed here, the research on it, is really, after me doing this for 20 years, it's still in its infancy. Chemobrain is something I heard about for 10 years before I found a decent paper on it. Patients know, human beings know what they're going through. It's a... no pun intended, it's a no brainer. The oncologists used to say, “Yeah, it should have worn off by now. It's not chemo brain anymore. It's aging.” Oncologists get cancer too sometimes. Then they start to find out that, a lot of this stuff is not just... you're not just making it up and it's not just aging.

There are these kinds of elements, these chemical or physical elements to survivorship that a lot of people haven't really focused a whole lot on, in terms of the research world, but people know. Unfortunately, what winds up happening when you have a gap in the research versus lived experience, is it can be kind of isolating.

We have places like this, where do we have patients who are coming together, and you don't have to say a whole lot. Like if you... for instance, just as an example. If you forgot your key in your room and you're talking to another patient, and you go, “I've spaced out left my key,” they're not going to think twice. Whereas, if you speak to a family member or a friend going to be like, “How could you leave your key in your room?” Over here you're among friends, “Of course, you did. Do you remember what your room is?” It's a good day. It's a good day.

09:09  It can be surprising who “shows up” to support you through transplant and who does not:  One thing that I think the speaker this morning alluded to, I've found that a diagnosis oftentimes is the best definition I can give it, in terms of its psychosocial impact. It's a nonspecific amplifier. It tends to amplify our relationships. It doesn't always transform them in positive ways. I'm sure a lot of you know that. 

How many of you here, when you started going through this experience, were surprised at the people who showed up and surprised at the people who didn't show up? Right, it just becomes part of the terrain. Hopefully, some of you have had the experience where people that you thought were on your team, became even more so on your team. Like they became more of themselves. A lot of times this is what happens. People become more of themselves. There're so many conversations I've had, where people who... they have surface friendships that stay surface, and they just don't talk to these people for a year or two sometimes.

There are some people who are surface friendships, who are there every single day. That spouse or that adult child, or that member from church, or whoever it was they thought was going to be there, “Yeah, call if you need anything.” Those are famous last words of many friendships.

A lot of times what winds up happening is that, as you're going through survivorship, who you're counting on, is not who you pictured it to be in your life anymore. That adds to the sense of kind of strangeness that we have sometimes. Frailty- this is a concept that's now coming up in the research- is that people who go through transplant, tend to have the sense of frailty more so than other people. It's true, and I don't think any of these things are steady states. There are flashes years afterwards, where people do feel more frail, or they do feel kind of foggy upstairs. Or they do kind of have changes in their relationships.

Sometimes it's not a steady state. There are all these ups and downs that can happen with it. You could be having a day, or an afternoon or morning, a week or a month where it's just, you're not quite your old self again. Or it could be several years. It could be permanent, but it's hard to convey to people the sense sometimes that, “I don't know how I'm going to be feeling in a week. Let's make some plans and maybe we'll get to it. Maybe we won't. Let's see how it goes.”

11:42  Recovery is not linear:  What we'd like to think is that, sometimes that gets better, the more time goes on. Oftentimes it's not that linear. I think one of the things that I'm constantly conveying to people in my practice, is that There are not that many straight lines here. It's a lot of ups and downs. It's a lot of curves and spirals. There is not this necessarily predictable trajectory of what things are going to look like. The elephant in the room is the uncertainty, the fear of recurrence or progression.

12:13  Worry about cancer coming back:  I think that most people who've had any type of cancer diagnosis, have probably gone through self-diagnosed 10 or 12 recurrences or other cancer diagnoses, by the time they get to their first follow-up appointment afterwards, and that first three-month window, sometimes. Headaches, “Oh my God, it must have spread.”

Any sort of aches and pains, “Was that a bone pain or was that muscle? Was that soreness or is that... There is something going on in my marrow right now?” There's a hyper-vigilance that comes up with that. 

Graft versus host disease. This is with the people who've gone through donor transplants or allogenic transplants. This is the thing that they talked to you about a lot. A lot of times, some doctors don't talk to you a whole lot about it, and it's kind of the surprise at the end of the transplant process. There're sort of this buildup about what we know, but when you get to this other stuff that I just talked about, this is sort of not talked about a whole lot. I find that as time goes on, this is the stuff that people are wrestling with more so than anything else.

Just as a show of hands, how many of you are over one year out? How many of you are under one year? Just kind of as a pivot point for how you think about this stuff.

I find the stuff that I'm talking about here in terms of the fatigue, the chemo brain, the relationships, a lot of that stuff becomes more and more central after about a year. Before that one-year mark, a lot of times people are more so focused on the physical aspects of transplant. As we get into one year or three years and so forth, it starts to feel I should say, it starts to feel a bit more uncharted for a lot of people. Not for everybody, but for a lot of people, it has a lot to do with what's going on in our relationships and, really in our inner world or inner process.

14:26  Survivor feels like an odd title for some patients:  Sometimes what people are describing in terms of survivorship, seems to be... the word itself survivorship, sometimes it doesn't really quite feel right. You're kind of just doing what you're doing, right? You're kind of just doing what you're doing. There's not normally a word for just being alive, aside from just being alive. There areall these different aspects to it, that I'm glad are being paid attention to now, more recently in the last three to five years than before. The research is still in its infancy, and so a lot of what we're going by is what people have been telling us. There are some things though that I think are worth paying attention to.

15:14  For a lot of people after transplant, life doesn't quite get back to what it was before. In many instances, that's a desired goal. People don't want to go back to their same old life. What I find is that what people really want more than anything else, is a sense of ordinariness.

Like just all this stuff that we do every day that we take for granted, that we don't think twice about. That's kind of the goal for many, many people that I've talked to over time. It's hard to kind of... I think the challenge has been always, how to convey when that's going to happen, to somebody who's not quite sure when it's going to happen.

It's something that oftentimes you figure out in retrospect that, “Oh yeah, that happened.” When you're under that one-year mark, it's sometimes very difficult to kind of have a sense of goalpost. One of the hallmarks of going through this whole experience, I talked about the uncertainty.

16:20  We are all wired for certainty:  What I found over the years is that most of us... I think it's fair to say all of us, were really wired for certainty. This is something that is just such a core human value, stability, certainty, knowing what's going to happen today or tomorrow. I've written this book about rumination, so I'm very well acquainted with that.

That ruminative mind that we all have, that chatterbox upstairs that's constantly painting our picture of reality. That helps to sort of construct a world full of certainty. When we go through something very big in our lives, whether it's pleasant or unpleasant... and especially after something like a transplant.

It takes most people many, many years to get that sense of certainty back. Sometimes it happens faster than others. It's not always the case. Again, I don't want to be like the guy who's telling you, “You're not doing it right.” A lot of this has to do with who you are going into transplant, as much as it does what you do after transplant.

This is part of what the research is showing, is that people who are going through the transplant, are not the same as the general population. There are good parts to that, and there are less desirable parts to that also. A lot of this stuff when we speak about it in psychology, or when psychiatrists talk about it, it comes with a lot of baggage.

17:49  Roughly a third of people who go through transplant develop post traumatic stress disorder (PTSD):  A lot of this stuff that we talk about like post-traumatic stress disorder, a lot of times people will focus on the disorder part. Like, “Oh my God, there's something wrong with me. I'm broken. I need to get fixed.” What we're starting to figure out, is that we have to get away from this kind of language that says, “There's something wrong with you for that.”

A lot of us are starting to think of post-traumatic stress, as an adaptive strategy. Like how do people go through very difficult things, and continue to live after those very difficult things? The model for post-traumatic stress. Let's go back a little bit for post-traumatic stress, and why is it important to talk about it?

It's because about roughly a third of the people who go through a bone marrow transplant, develop post-traumatic stress. That's significantly higher than the general population, which is like 3% in the general population, versus around 30% for the bone marrow transplant population. It's worth paying attention to.

Not because it's like this heavy baggage that you're going to carry around, but I think that a lot of times when I'm talking to people about post-traumatic stress, they find it somewhat liberating. Like, “Oh, I'm not just like incapable of coping with this thing or I'm not... yeah, there's not something that is wrong with me personally. It's part of this condition,”

What we find out, is that when people have these kinds of conditions, there's clusters of symptoms that come together. If you understand these, it's easier to kind of factor them into your experience. It's easier to start factoring in what you can and can't do. I want this to be kind of a little liberating, rather than oppressive... this kind of knowledge.

With post-traumatic stress, the textbook cases that we know about or happened in the Vietnam War, took about 20 years after the Vietnam War, before people really became okay with calling it post-traumatic stress. Veterans knew they had it, they knew they weren't the same people that went into Vietnam. People in all wars have had post-traumatic stress. It wasn't really until the 1990s before it was, okay to start talking about it. It wasn't until the 1990s where it was okay to start researching about it. This hasn't quite hit oncology yet. It's starting to, but it hasn't quite hit it just yet. What are the... need to jump ahead a little bit. Yeah, what are the hallmarks of post-traumatic stress? I'm going to get to those a little bit, in a little bit of time.

20:25  Approximately 43% of people who go through transplant meet the diagnostic criteria for depression:  Depression is the other one. About 43% of people who go through a transplant, meet the diagnostic criteria for depression after transplant, versus about 25% in the general population. If you can think of it, in bone marrow transplant, the rates of post-traumatic stress are 10 times the general population. The rates of depression are about double.

Again, this isn't like a... I hope this isn't coming across like bad news. I want this to be kind of liberating and empowering, because if we know these kinds of things that are potentially going on, we can do something about them. We can manage them. We may not be able to cure them, but at least we can manage them. Then we can figure out what the most effective tools are to live with them. Distress is kind of where a lot of these conditions converge, and there's a lot more to post-transplant survival than distress. I do want to pay attention to this, because this is the riskiest one. Distress in psychology, is not quite the same as what most people think of distress being.

21:32  There are three pillars of distress: sadness, anxiety and anger:  In psychology, we think of distress as having three equally valid outlets for expression. The one that most people find a very easy time getting along with is sadness. If you're sad, if you're feeling upset, if you're crying, people will say, “Oh, you're really distressed. I understand. Is there something I can do for you?”

When people are really anxious or stressed out, aside from tossing Xanax at you, at least that's what they do in South Florida. I don't know what it's like in other parts of the country. It's something between PEZ and Tic Tac it seems, but it manages it, it doesn't cure it.

22:12  People can get annoyed with someone who is anxious, while being sympathetic to someone who is sad:  A lot of times what people... people will approach anxiety very differently than they'll approach somebody who's crying. A lot of people get very annoyed at anxious people. A lot of times people will move away from sad people, or they'll move close in and they'll see what it is, and they'll try to offer support. A lot of times people run away from anxious people.

They're just, “It's too stressful.” This includes the healthcare team. This also includes the family. A lot of times people will say, “Well, we'll just knock it off.” “Oh yeah, yeah, I should have thought of that.” Right, like that's the... a good way to end a marriage is when your spouse is really stressed out, tell them to relax. Right, has that ever worked? It's never worked for me.

23:03  The third pillar of distress, that people really have a hard time with is the anger, right? It's really hard to move closer to somebody who's angry. It's really hard to see that as the same emotional energy, as somebody who's in a dark room crying into a pillow, right? Anger is really awful to be around.

A lot of the traditional psychological ways of thinking, anger is a manifestation of powerlessness. When people feel powerless, they tend to get angry. It's part of our survival instincts. A lot of times when people who are very angry, you start talking to them and start tunneling in. A lot of times what you find is that emotionally, there's a sense of, “I am no longer in control of my life, and this sucks. The only thing I can do, the only way I can feel, the only way I feel I can feel, is to be very angry about it. I'll get very angry about it.”

It's the same emotional energy behind panic attacks, between crying, between doing all of those other things that we would see as distress. A lot of times people who are angry after transplant, and it does happen, they start alienating people. I think it's up to us to educate everybody. Anger is the same emotional energy as feeling sad, as feeling anxious.

24:27  Not feeling anything can be a sign of depression: A lot of times, what I find is that when I'm asking people, “Do you feel depressed?” It's been many months or years after transplant, people go, “No, no, no, I'm not sad at all.” “Okay, so it's not sadness.” Sadness is just one symptom of depression. A lot of times depression is also just not feeling anything. Just blah.

You're in this sort of unfeeling kind of void. I think a lot of people who've had depression, will describe it as just you're in this kind of vacuum almost, or just time seems to go on and there's not a whole lot of energy going on in there. There's not a whole lot of thought, or a whole lot of feeling. It can be just as potent.

The symptoms can be just as potent as sadness, if they involve a lack of motivation. “I just don't feel like doing anything anymore. I don't have anything to look forward to. I don't feel like I have anything to look forward to. People ask me to go out to stuff, I keep saying, “No, I don't want to do it. People will ask me if they can come over and bring me stuff, “No, I don't want to deal with any of them.” 

A lot of times that's physical. A lot of times that's chemically-induced. If you're having a rough day, medically, sometimes it's healthy to be left alone. A lot of times what happens is that, people are just, “No, I don't feel like it.” If you do it, they're kind of like, “Yeah, that felt okay. It wasn't bad. It wasn't good, but it wasn't bad.” Not bad as is pretty good too. I think it is important to distinguish that depression sometimes is just blah, also. Not just boo-hoo, but also blah. These are very scientific terms.

26:20  The parts of chronic post-traumatic stress that I think it's important to be sensitive to, is hyper-vigilance, isolation and re-experiencing. I'm going to break those things down a little bit. Hyper-vigilance is being on edge. Feeling like an emotional trigger finger, trigger finger, trigger happy. The smallest thing can irritate people.

I know sometimes it can be in unexpected ways. Like if you go to a party or if you go to visit somebody, or if you have small kids at home and they're being really loud, and you just can't handle it. You don't know why, because you've always liked kids. Or your dog is barking, and you can't handle it, and you like your dog, but it's just too much right... it's just too overwhelming. That's hyper-vigilance. That doesn't necessarily mean it's post-traumatic stress, but that's just like you're overloaded.

Part of the hyper-vigilance is also isolating. Not wanting to be around other people, not wanting to be in places where other people are. Just preferring to be left alone. Re-experiencing, I think many of you after transplant this is... re-experiencing is really tricky because it's adaptive. This is how we integrate things into our identity. This is how we integrate things into our personality.

A lot of times after transplant, people are kind of zoned out. They're having some sort of ruminative memory, about being in the hospital. About maybe, there're certain smells associated with transplant. They may be smelling those things again. They may be just kind of not really there sometimes when you talk to them, and they're reflecting back on somebody they met or some conversations they had, or the nurse or something like that. It can also come up in dreams, and people oftentimes will have dreams about being in the hospital. They'll have dreams about being in the transplant situation.

If that's happening, if all three of these things happen in a way, all these things happening in and of itself, isn't necessarily post-traumatic stress. If all of these things that are happening regularly, in a way that they kind of are preventing normal function, they're getting in the way of you doing things that you want to do.

If they're getting in the way of just life, then it may be important to talk to somebody about it. Unfortunately, one thing that I found about this though, is that a lot of the post-traumatic stress therapies are geared towards one single event. This is something I wrestled with. I'm not trained to deal with PTSD.

When I refer people out, half of them come back and they say... they kept wanting to talk about the traumatic event. "Well, my traumatic event lasted six months." How do you kind of unpack that?

The treatments for chronic PTSD, instead of just one event, like a car accident or a battle, a combat situation, healthcare PTSD is still in its infancy in terms of treatment. I do think that for a lot of people talking about it, is better than not talking about it. A lot of this is what we call edge states.

29:40  Edge states are the boundary between the known and the unknown: The previous speaker, Dr. Abernathy [inaudible 00:29:42] on a lot of things, that I want to kind of unpack and build on a bit more. Edge states are something that are defined as the boundary between the known and the unknown.

There're so many of these that we come across through... an edge state for me was this morning when I spilled coffee all over my pants and I thought, “Oh, now I don't know what it's going to be like, to present with coffee all over my pants," right? That's an edge state. An edge state is what opened up when you were diagnosed, that 30 seconds before those words, you had a life that changed within 30 seconds after those words. That's the edge. 

A lot of times these are stressful. They're not always unpleasant. Edge states are not always unpleasant, like you're about to open a present, right? That's an edge state right there. That's a pleasant one, right? A lot of times our body experiences stress and excitement with the same machinery, with the same mechanisms. Excitement and anxiety are physically the same. Our mind, our brains encode them differently, which is kind of a tricky thing to think about.

A lot of times people will say, “Oh my birthday's coming up and I'm really anxious about it.” Like, “Are you anxious or excited?” “Oh yeah, I'm actually excited about it.” “All right, well, let's use excitement then,” because they feel the same, but traumatic events are always edge states. Edge states aren't always stressful, but traumatic events are always edge states.

They're meant to be temporary, but cancer survivorship and transplant survivorship are chronic. It's a chronic edge state. A lot of times especially in the beginning, I think of it sometimes as a tree ring, where when you get to the core of the tree rings, the rings are really close together, right?

Those are those markers of time. As you get further along in the tree ring, the tree is bigger and those rings are getting more and more spaced apart. Please don't cut down a tree to check this out. One of the core functions of the human mind is to keep a stable in an unstable world. We thrive on certainty.

32:01  We thrive on knowing what our future's going to look like. When you're going through transplant survivorship, the goalpost keep changing. Like first, they say, “Day 0, day 10, day 20, 30, 100, 6 months, 1 year.” There's plenty of people I've been with, who find those post one-year goalpost to be way more stressful, than the day 30, day 100 goalpost.

The constant monitoring, it absolutely sucks, but it can be reassuring. As you move further along, it becomes this sort of strangeness to it. Like, “How do you really know I'm okay?” This is a big part of this roller coaster, is you're kind of more and more on your own as time goes on and in more ways than one. Day 0, day 100, 1 year, 3 years, 5 years, it's learning how to navigate those changing goalposts, and those changing time markers. The certainty and the uncertainty become folded into each other, such that the uncertainty becomes more of a sure thing, for a lot of people as time goes on. How do we navigate this roller coaster?

I think one of the main questions that is being asked is, “When is it safe? Am I safe right now?” “Yeah, I think so. I think right now is okay.” “All right, what about now?” Something that we talk about often, is that the buildup to a bone marrow biopsy or the buildup to the scan, when one is the anxiety clock start on that? I don't know.

I think as soon as you know that you're about to have one. How long does the relief last? Right, it doesn't last as long as the buildup does. It never does. A lot of times what happens is that, we'll keep asking this question, “When is it going to be safe? When is it going to be okay?”

34:00  What psychology research has taught us is that, we encode stressful events with three times the energy as non-stressful events. We have to deliberately count positive information, three times more than negative information. What does that mean? 

If I talked to you about something like a fender bender, Florida, this is kind of a daily thing, right? You'll notice there's a lot of dents in the cars in the parking lot. People here don't drive very well. I like to think they're looking at the sunshine, but I think they're looking at their phones. You'll remember that car accident forever, the time that you got a dent. You won't remember all the commutes that you had, or all the drives that you had that went well. Like completely forgotten, completely forgotten. We're better at remembering bad stuff, then we are at remembering good stuff. It takes a lot of deliberate effort on our part, to remember the good stuff. I do want to talk a little bit about this stress response, oops. Why this happens is, because our survival depends on us being able to become stressed out.

35:17  Our survival depends on being able to become stressed out:  It sounds really weird because, like stress is the enemy, right? No, it kept us alive. It's kept us alive for thousands and thousands of years. We've maybe lost the equipment. We've lost the skill set to manage the stress in healthy ways. Think about it, our ancestors did not live in places like this. They lived out in nature like distant, distant ancestors.

Most of our history, we were hunter gatherers. This whole farming thing is a pretty recent experiment in human development. In that kind of environment where we were shaped, we were confronted by physical threats to our survival. Our bodies learned how to adapt to that kind of stuff. When we're faced with stress, human beings do very predictable things. We start breathing rapidly. We start ruminating. We start scanning our environment internally. We have changes in our GI function. We start getting either nauseous or may be irritable bowel or something like that. There are all of these different cascades that start to happen. 

36:28  Empty your mind and relax to manage stress: What a lot of times... what I find is that in order to sort of neutralize the stress of events, neutralize the stress of this emotional roller coaster that we're on, this is really helpful to do in waiting rooms, in doctor's waiting rooms. I recommend everybody do this. If you wait less than five minutes to see your oncologist, you do. Well-

Oh, okay. Okay, there you go. Excellent spokesperson. How many of you, if I tell you to just empty your mind and relax right now, can do that? A few of you, okay. You guys empty your mind and just relaxed right now, and don't pay attention to anything else I'm saying. Most people can't do that.

37:15  Mindfulness helps manage stress:  A lot of times what I tell people is that, you can't think your way out of stress. The best thing to do is use your body to trick your mind, into forgetting about stress for a moment. This is where these mindfulness skills come in. It's really just awareness of the breath.

37:28  Diaphragmatic or yogic breathing: The most effective one that I found, is the diaphragmatic or yogic breathing, which is breathing through the belly. If you want to imagine there's a balloon in your belly, you inflate the balloon to inhale, hold it for a second and then deflate the balloon to exhale, and feel free to try it out right now.

This diaphragmatic belly breathing, this is what we do in deep sleep. When you do it when you're awake, when you do it deliberately, the body gets tricked into turning off the stress response that it has. When the body is relaxed, the mind kind of starts to settle in a bit. This to me is the most effective tool for navigating this emotional roller coaster. It's allowing the mind to travel, but if the breath is regulated, if you have awareness of the breath, the mind is going to start traveling a little bit less. Maybe not right away, maybe doing this 5, 10, 15 minutes a day. 

It may take several days to kick in, but it does seem to have a very positive effect on how active the mind is during stressful times. As the mind travels, just bring the awareness back to the breath. What the research says is to do this for 20 to 40 minutes, just spending time with your breath. Just spending time with awareness of your breath, of the belly breath.

I think that for a lot of people, the expectation is that, you're going to just sort of blank out in your mind completely. That's not really what happens. What we're trying to do is build the machinery in your body, that handles the stress in different ways than it was before. A couple of you work with me, and you know by now that I do talk about the breath quite a bit.

The initial reaction is that, "I'm breathing anyway; like, how is this going to do it?" But people are actually very surprised. Your breath is very portable. You can take it with you anywhere you go, I hope. What I've found is that, just working with the breath oftentimes, it bypasses all the mental wilderness, the mental jungle. Yeah.[inaudible 00:39:38] Okay, continue.

What I find is that a lot of times the ruminative mind, what we're having up in our minds, all the stress that's in the mind, you can't disentangle that. It's too dense of a wilderness up there, but using the body is really almost more effective than any of that. A lot of times what happens is that, when people are more settled in their breath and their body, the mind starts to open up into other things. This is kind of the meat of it. This is what the other speaker was talking about, is this meaning-making capacity that we have. It's moment to moment, to find meaning in things. That's really the key to survival.

40:25  Making meaning in life is a very personal thing:  It's personal. It's a very personal process, how to make meaning of things. I think this is the same quote that you pulled up. It's like, “Still my good stuff.” “Those who have a “why” to live, can bear with almost any how. Viktor Frankl like he said was a... he was a psychoanalyst actually that went through concentration camps in the 40s. Not by choice. I think he has a wonderful book, which I've recommended to a lot of people, Man's Search for Meaning. I really recommend people read it. It's a tough read. He does talk about life in a concentration camp, which is not pleasant, and he doesn't hide it.

One thing that he found being in the camps, is that people who had a sense of meaning and purpose were able to survive. People who lost meaning and purpose, died very quickly. I think that extends out into every circumstance, any circumstance that's difficult for human beings. If we have a meaning, if we have a sense of purpose as to why we're doing it, but whether it's for a relationship, for an aspect of our identity, a life goal that we have, an experience that we want to share. Something that we can tether our minds to on our darkest days, it tends to help us, it tends to help pull us out.

For Viktor Frankl, one of the most meaningful aspects of his whole time there, was seeing something that we're all going to be able to see tonight, unless there's a lightning storm again. He talks about being present for a sunset, doing this one night in the concentration camps as they were coming back from a work detail, and just grasping the beauty of the sunset for him. In later lectures, he talked about how being present, and being able to absorb the beauty of the sunset. That he describes that that was the day he was liberated from the camps, because they hadn't taken away his capacity to appreciate beauty. They hadn't taken away his capacity to be fully present.

42:32  It’s ordinary moments that can be life-changing:  One thing that I find is that, when I'm talking to people about survivorship, about this emotional roller coaster, working with the breath to train the body to create conditions for the mind, allows the mind to make meaning of ordinary things. It's not these big grand goals sometimes that are life changing. It's these ordinary moments. I think many of you, when you spent a lot of time in the hospital, may have fantasized about going to the grocery store. About going to Starbucks and overpaying for coffee. About being stuck in traffic and not having any of this nonsense, any of this garbage to deal with and how easy everything seemed before then.

Well, a lot of times what happens is that, as we go through life and you go through the transplant and time goes on, and you're on this emotional roller coaster, we forget that it was those ordinary things that we really longed for. The stress of survival replaces an appreciation for those ordinary things. My goal, my wish is that we can all spend some time with our breath, so we can open up our capacity to find great joy in ordinary things again. It sounds kind of counterintuitive like, "Shouldn't the emotional roller coaster of survivorship, shouldn't there be something grand?" No, I think it's just being ordinary about things again.

44:00  Being able to be present for ordinary moments. That's where the real joy is. The good news about that, is that it's pretty cheap, right? It's the stuff that you're doing anyway. It's this ordinary stuff that you were doing before. This ordinary stuff that we all do day after day, but it's bringing that sense of awe and reverence to it, that makes it so much more meaningful. I think those are like little vitamin packs. Little zip packs or little doses that we take every day of ordinary moments, that become meaningful.

For me, that's been the key that's helped people navigate survivorship the best. A lot of times, we have to create these conditions that make that possible. Structured routines that facilitate resilience, spending time with your breath. Mindfulness-based activities, doing the dishes mindfully. Turning the TV off is a wonderful way to get back into being present for ordinary days. Especially if you're watching news, turn it off. There's nothing good happening. They just yell at each other.

Exercise, what we find from the research is that, just doing something simple like walking, especially walking in nature. If you can do that for 20 or 30 minutes, can be as effective as an antidepressant. It takes longer to kick in, but it can be just as effective, and the side effects are so much better.

 Meaning-making "accidents" a lot of time. If we're cultivating this kind of lifestyle day after day, all of the sudden you'll have, like Viktor Frankl did, this moment, where you're just seeing something, and you're like completely absorbed by the beauty of something so ordinary. There're so many people that I've talked to, who found that they had completely life-affirming moments, doing stuff that was so mundane, like sweeping the floor or being in a restaurant and just having this flash: all of the sudden, "I'm here. I'm really here. I'm really, really here. This is really, really cool;" and it's hard to convey that sometimes, by doing something so ordinary. It can be so amazing. I think for me, that's been the key to emotional survivorship, is being present for ordinary moments.

46:16  Recommend Viktor Frankl book Man’s Search for Meaning:  I’ll close by this quote, another quote from Viktor Frankl. I really do recommend everybody, try to read Man's Search for Meaning if you can. It is a really, really good book, about how somebody who made it through something extremely difficult, came out of it with some tools for all of us. "What is to give light, must endure burning." I think I made it just under the wire in terms of time. We do have time for questions, and I do encourage questions. Yes, and please come up to the mic.

Question and Answer Session

47:09  [audience] All right, so what do you tell your patients about dealing with stress and the family members?

[Kumar]  What do I tell patients about dealing with stress and family members? There are two answers to that. One is that, family therapy is really, really interesting, and that's long-term. That's a long-term process within the setting of... within the cancer center setting, we're not really equipped to do that a whole lot.

Family therapy sessions usually have to be about an hour and a half longer. Or an hour and a half to two hours, and we just don't have the... we're not equipped for that. There's family by choice, and family by birth. For some people quite honestly, family by choice is much more preferable. Those are your close friends. The community you've built up.

Families do tend to go through the amplifier of a cancer diagnosis. They do become more of themselves generally, not always. Sometimes with benefit and sometimes with not so benefit. I do encourage people to have switchboards, meaning you designate one person to relay information and updates.

Be it through social media or email, or group text or WhatsApp or something like that, so that the burden of constant updates isn't on the "patient." I do think healthy boundaries are healthy, and there are some people who... they don't respond well to that, too bad. I'm not sure I answered it completely, but family... we all have our families. Yes, next question please.

49:02  [audience] Question about whether PTSD after transplant in under-diagnosed: There's a question, and also, I just want to thank you for the validation on the PTSD, because that is something that I struggled with a lot. My husband's family is military, so there's always a military aspect. It's like driven. When I went through all this, we started with breast cancer.

Three years later I was pregnant with my miracle baby, got leukemia and then made it through that. Three years later I relapsed. I've been fighting multiple things, so for me, this will never end. I never realized I had PTSD, and I really have that anger component. It does drive some distances. Thank goodness I recognized it and got me some happy pills for a little bit.

It was something that... you're saying that the medical side is still unknown. This is 10 years later, and I'm finally just realizing, "I had PTSD." Thank you for that validation, because it does mean a lot.

I wish my husband was here, because I think he just thinks I'm crazy half the time. The other part, since this is such unknown new field, do you feel that that 28% is maybe even on the low side?

[Yeah, and in your studies... I was an accountant, so I love the statistical analysis. Do you have any studies on the military side? What is the military component of PTSD just as comparison?

[Kumar]  Off the top of my head, I don't.

[audience]  Okay, I'm just curious because coming from that... and I'm not downplaying what they go through, but it's like, it's always in my family that it's okay for them, but it's not okay for me.

[Kumar] Right, one of the things that makes it really tricky is that, we've gotten better at assessing PTSD in the military. The rates seem like they're climbing when, actually we're just getting better tools.

The other thing is that, in the military, PTSD tends to be very focused on one experience.

There was one IED, there was one firefight, there was one crashed or a hard landing or something like that. With medical PTSD, the stuff can last for months through years.

Like so, "What gave you PTSD?" It's like, "Well, the last 10 years did." "What about them?" "Well, where do I start?" It becomes very... I don't think we have the language yet.

[audience]  Yeah. Okay, I just want to thank you and also just ask these questions.

[Kumar]  Okay, sure.

[audience}  You've been through hell and back, God. How do you deal with waiting for the next shoe to drop? You're diagnosed with leukemia, and mucositis and then ITP. Just like when does it ever end? When can I stop counting? Yeah.

52:10  [Kumar] The question is, when can you stop counting? How do you deal with always waiting for the next shoe to drop? There's a horrible saying in the Tibetan Buddhist world. You'll understand why it's horrible after I say it. That, "If you can change something, go ahead and change it. If you can't, then there's no sense of worrying about it." I hate that saying so much, because like it doesn't work that way," but that's kind of the underlying assumption. I'm not sure that there's a switch in there, that's going to turn it off, that waiting for the next shoe to drop.

I find that experiencing moments with greater depth, it allows it to go from kind of staring at your nose to nose, to moving into the periphery from time to time. If we can move awareness of that next shoe to the periphery more of the time, I think that's really successful.

We don't really know aside from pharmacology, how really turn that stuff off. The thing is, is that if you turn it off completely, you also kind of lose the ability to have other kind of moments of deep emotional satisfaction too. Kind of getting into that middle zone, you lose the extremes on either end. I mean, realistically there's just periods of time where it is going to be more stressful than others. I think this is part of educating caregivers also, is that, I'm not sure it really does get easier as the years go by. Those bone marrow biopsies, I'm not sure it really like, "Oh, so you're used to it by now?" "No, not really?"

I think maybe just planning around it, is sometimes the most realistic thing to do. I do think though, I have these conversations so often that you do go from living life with a connect-the-dots, from test to test. You're kind of connecting the dots from one test to another. I think it does get to be a bit much. The key is that, you have moments of life in between those dots. Moments of living as fully as you can, in between the dots. I'm not sure that those shoes and those follow-ups, are ever going to really go away. I don't like to plan that, once everything mellows out then we can start living. You have to start living with those things going on still. Yes.

55:12  [audience] How to communicate with counselors that you need help dealing with transplant, not some other issue in your life?  I had a question about seeking help post-transplant, dealing with the emotional roller coaster as you will. We've noticed some difficulty with finding... when you do seek counseling or something like that, what verbiage would you suggest or is there a way you would suggest getting across two accounts or when you meet them? Yes, I have a lot of other stuff that's happened in my life, when either I was a kid, or I was an adult. This is what I need help with right now. We've had some issues where they still kind of want to go through... I can see kind of wanting to get an overview of where you're coming from. How do you, without kind of alienating them, their professionalism, kind of tell them that, "This is what I want to focus on, and this is what I need help with?"

[Kumar]  I think the first question to ask is, have you worked with people who've had a transplant, well, bone marrow transplant? Have you worked with people? Have you worked with medical populations? It's really, really important to ask those kinds of questions going in.

I've heard so many horror stories from patients who for whatever reason, they go outside and the therapist wants to talk about their funeral. It's like, "What? No, that's not why I'm here." Like, "Oh, but I thought," Yeah, you learned that 35 years ago. It's no longer relevant.

[audience]  Yeah, do you have any suggestions, or are there any resources for seeking out people who kind of are more... other than calling every counselor in your plan book-

[Kumar]  The first thing I would do is, go to the facility that treated you and see who they refer to. If they have psychologists or social workers who they refer to regularly, that would be probably the best place to start. I don't know if Leukemia & Lymphoma Society keeps track of, practitioners who are well-versed in this kind of landscape, I would ask them also.

57:24  [audience] Question about relationship of PTSD to OCD: Right, a lot of times there are a lot of counselors who offer telehealth, so Skype sessions, which are kind of strange at first, but it's better than bad therapy. My question is, what if the PTS or the depression turns into OCD? Because sometimes I find myself doing things repetitively

[Kumar]  Oh, when does PTSD or depression turn into OCD? Those are separate things, but I think there's an underlying distress that's... it's the same emotional energy deep down inside. OCD is a bit different. I have not seen a whole lot of research on that, because I think a lot of times it's like, "You should be washing your hands."

[audience]  No, I'll wash my hands, but 9 times out of 10, if I'm sitting somewhere or if I go out, if I have a bracelet on, I'll play with the beads on my bracelet, or either I'll rub my thumb and my index finger together.

[Kumar]  Okay, so OCD, Obsessive Compulsive Disorder is a repetitive behavior or an obsessive thought, that interferes with a person's ability to do normal things and achieve their daily goals. It's maladaptive. We all have some stuff that we do. If you're spending say 15, 20 minutes... if you're late to stuff because you're rubbing your thumb... and are you like not able to have conversations with people because you're doing that or?

I would choke that up to nervous energy, and not obsessive compulsive disorder. Okay, so people with obsessive compulsive disorder for instance... they'll spend 15, 20 minutes washing their hands and they're late to appointments, because they have to get up earlier, because they know they're going to be washing their hands or checking door knobs. Yeah, very common one is they feel like they ran over something. They'll drive around the block repeatedly, to track and they're late to things. That's nervous energy, and I think that's just part of the landscape, okay? All right.