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Finding a Healthy Balance: Tools for Managing CLL-Related Stress

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Published on July 3, 2019

This Partners program features a dynamic panel of chronic lymphocytic leukemia (CLL) patients and mental health professionals discussing the effects of stress on people living with CLL. Can stress affect CLL growth? The panel walks through a variety of stressors brought on by the disease and treatment, and the impact of stress on a person’s well-being and cancer risk. How can patients learn to cope? The panel also provides expert and patient perspectives on stress management techniques.

This program is sponsored by Pharmacyclics. This organization has no editorial control. It is produced solely by Patient Power.

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What a wonderful time we had! We were excited like fans at a rock concert, but our rock stars were the medical experts.

— Lynn, CLL town meeting attendee

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Transcript | Finding a Healthy Balance: Tools for Managing CLL-Related Stress

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That's how you’ll get care that's most appropriate for you.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Andrew Schorr:

Hello, and welcome to Patient Power in this Partners program. I’m Andrew Schorr. Partners is all about us working together on issues that we face in chronic lymphocytic leukemia, and joining me are some wonderful guests who are gonna be talking about stress as it relates to CLL. Does it have physical effects? Can we reduce the stress? Can that have a benefit? And, we have people who really are living it and thinking about it a lot. Me too, because I was diagnosed in 1996 with CLL. So, let’s go around the continent, if you will. I wanna start in Louisville, Kentucky with Paul Salmon, and Paul is a professor, actually, at the University of Louisville, right, Paul?

Paul Salmon:   

That’s right, yeah.

Andrew Schorr:           

What’s your field that relates to this?

Paul Salmon:   

Well, it’s kind of a blend. My primary area is clinical psychology, so I do teaching, research, and community work in that general area, with a particular focus on stress and stress management. A number of years ago, I was really fortunate to work and collaborate with Jon Kabat-Zinn, who started a program called Mindfulness-Based Stress Reduction at the University of Massachusetts Medical Center. That was back in 1995, and I was so taken, so impressed with his work and the work of their clinic, that that’s pretty much been the foundation for everything I’ve done since.

Andrew Schorr:           

Well, yeah, but we should mention there’s another connection here. About a year ago, Paul, you were told your white count was going up, and guess what? A diagnosis of CLL. So, you’re living it a little bit now.

Paul Salmon:   

Sure, yeah. I’d have to say that the meditation practice over the years really was a good preparation and a good foundation. It’s really all about facing things that, say, occur on a moment-by-moment, day-by-day basis, and I think the more present-moment-focused you can be, it really does have a powerful impact on managing stress.

Andrew Schorr:           

Well, that’s what we’re gonna talk about. Now, let’s go up to Toronto, where an old friend of ours, Mark Silverstein, has been living with CLL since 2010, and has been through it. We should mention Mark Silverstein decided along the way to be trained in psychotherapy and actually counsels people who are dealing with advanced cancer. Mark, you’ve been living with it; just an update from you—last time we spoke, after many different medicines, you had a transplant, but now you need more treatment, I understand.

Mark Silverstein:         

Correct. I have to admit it was a little disappointing that the potential for a cure was there, and right after about a year—my year anniversary after transplant, I started relapsing again. It was a very big disappointment, but thankfully, prior to transplant, I was on venetoclax (Venclexta), and I did venetoclax, rituximab (Rituxan), and I stopped it. I didn’t get a resistant to it. So, we started venetoclax, backed up again, and thankfully, it is working for me.

Andrew Schorr:           

Knock on wood. We sure hope so. And, related to your situation, here, you are counseling other people, and you’ve gotta have the stress, or however you’ve dealt with it along the way. So, we’re gonna talk about that. Let’s go to Ohio State, one of our largest leukemia centers, and there is a professor, Barbara Andersen, who actually studies all this, and Barbara, this whole connection of stress and illness in hematologic malignancies and CLL—that’s your field, right?

Dr. Andersen:  

Yes. I’ve been—I’m a professor of psychology, and like our colleague here, trained as a clinical psychologist, but have been doing research in cancer for essentially my entire career, and in that, moved into the area not just of stress, but what effect stress may have on other biologic responses such as immunity, and that’s certainly important in the context of virtually every cancer there is, it turns out.

Andrew Schorr:           

Well, I understand. As a CLL survivor, if you will, my doctor insists that I get immunoglobulin infusions to boost my immune system every month. This is expensive stuff, like $10,000 a month, so I understand the worry about your immune system, and fortunately, I’m doing okay. So, just to start with you for a minute, Barbara, do you believe there’s a connection with stress that we have that either led to a trigger of CLL or effective CLL?

Dr. Andersen:  

Well, there’s research not just on the blood cancers, but also solid tumors as well, so many studies that people have done things called a meta-analysis, and in those summaries of the literature, there is data that does not support the relationship between stress and the onset of cancer.

However, there’s very reliable findings across the years, across tumor types, that stress is indeed related to disease progression, so that we have studied breast cancer patients, currently studying those with lung cancer and CLL patients, and in all of those studies, stress has a really toxic effect in that it is not only biologically/psychologically disruptive when it is occurring at the worst periods, like cancer diagnosis, but it also predicts—portends—predicts poor quality of life, depressive symptoms, and other kinds of outcomes down the road. And so, that is part of what the toxicity of stress is.

Andrew Schorr:           

Okay. I’ll just say—we all have our own anecdotes, and I know maybe this hasn’t been rolled into a clinical study. My diagnosis in 1996—a long time ago—CLL followed a year when we’d had a lawsuit. Somebody—frivolous lawsuit, and somebody sued us, and I’d felt personally attacked for months and months. And then, I had a routine blood test, and it showed an elevated white count, and we were off to the races with this condition, CLL, I’d never heard of.

Now, whether that has any scientific validity, I don’t know, I just know that that was a tough time in my life. We’ve spoken to other people who’ve had divorce, or lost their job, or a financial situation, so I don’t know, but let’s talk more about the managing stress after diagnosis. So, Paul, you obviously have studied it, but now you’re living with it, so you’re in this one-year, watch-and-wait situation. You were told you probably have this condition you never heard of, CLL. How have you used what you know to minimize stress?

Paul Salmon:   

I think there are several parts to it. I guess in one way, the initial diagnosis, of course, came as a surprise, because after all, I had just gone in for a routine workup, and in every other respect, everything else was great; all my other numbers were fine. Then, it was kind of like, “Well, we just have this one number that seems to be out of the ordinary, and maybe we should look into it.” That was my first inkling, and maybe something that I wondered about a little bit.

And, I should mention that my father probably—may have had CLL. We don’t know, but he had an elevated white blood cell count for years. So, that’s kind of—and, there are cancers in the family. I take really good care of myself. I work out, I meditate, and do all the right things, and of course, people who are diagnosed with conditions like this often go through an initial phase where they say, “Why me? I do everything right. I follow all the rules. I eat well.”

And, in a certain way, what’s helped me is to become real curious about this and to look for interesting connections that I can make. I can see where people—you could get into a sense of blame or feeling like somehow, you’re responsible for what happens, but really, the foundation of the meditation practice of mindfulness—which is based in Buddhism—I think there’s a view of the world and of how things are that certainly helps me keep things in perspective.

Andrew Schorr:           

You seem calm. You seem pretty calm.

Paul Salmon:   

I just take great joy and pleasure in what’s happening on a moment-by-moment basis, and I think a really important element is I can find my mind—I’ve been meditating for years, but the essence for me of mindfulness is that paying attention to what’s going on in the moment, and then noticing when you’re not in the moment. That’s kind of a critical thing, because you get off wondering about things, predicting, and trying to make projections, but when I find myself doing that, I say, “Okay, back to the breath, back to the moment, and let’s just go with that.” So, that’s very helpful.

Andrew Schorr:           

Mark, you were nodding your head there a minute ago when he was talking about living in the moment. So, you’ve had a rollercoaster with CLL.

Mark Silverstein:         

Absolutely. Often, CLL is my moment to be living in, but yeah. I absolutely agree with everything Paul said. 

Andrew Schorr:           

So, how do you do it? Because you’re a man who’s lived with tremendous uncertainty. We all have uncertainty, and I’m gonna ask Barbara about this in a minute. The thing that weighs over me as a cancer patient—two blood cancers, because I have myelofibrosis as well—is uncertainty. But, what I know is the now. What about you? With this rollercoaster, you’re on new treatments now after the transplant, which you hoped could be curative. How do you manage that?

Mark Silverstein:         

It is often challenging at times. Honestly, I probably went through a bit of a grieving process after relapsing after the transplant. There was some hope that there was a cure in there. And so, I think both my wife and I actually went through a bit of a grieving process through it, and part of it is allowing yourself to go through these things and experience them as opposed to suppressing them. 

But, as Paul said, the mindfulness—I’ve taken mindfulness courses, walking—all these things help. Our emotions—I like to believe that we are not our emotions. They don’t control us. We can control them. If we understand ourselves well enough, we can make different choices. As mindfulness teaches you, something comes into your head, you put it up there for now, say, “I’ll come back to it later,” and come back to the present moment, and that’s really the most important thing.

The existential challenge of CLL especially—what I’ve gone through is 17p, and all the treatments, and all the relapsing – it is challenging, and it’s challenging to stay in the moment, and I’m not gonna lie: There are times that I’m not in the moment, I’m in the hell of CLL world, so to speak, but it’s bringing yourself back as quickly as possible to what matters. You can’t live in the future too much. You can’t live in the past, because then, you’re not in the present, and really, the present is all I have, because I don’t know what’s gonna happen next. And so, my need or my motivation to stay in the present is huge, and so, anything I can do to manage that is where I focus on.

Andrew Schorr:           

Right. I remind myself, “I don’t know about tomorrow, but right now, I know about today. I’ve got a great cup of coffee with my family on it, and that’s what I know.” So, Barbara, there you are at Ohio State. It has one of the largest leukemia clinics in the world. People come from all over, and you get people—among the patients who come—who are freaked out, and I get calls like that, and I know you have patients like that. How do you help people get grounded?

Dr. Andersen:  

There’s no, simple answer to that question, but on our end in terms of what we do, we help them process this current experience. We also teach them, help them understand that while stress is really buffeting them right now, in many respects, that’s a normal response. They have gotten very bad news, just like you would have for other kind of traumas in one’s life. 

But, we can also get ourselves back to our baseline, and we can do that by discovering how stress is—their stressful thoughts, their actions in terms of what are they doing when they are feeling at their worse, what are they not doing, and really, what are those bodily sensations that are just kind of firing off, like stress-related headaches, muscle tension, and so on.

So, part of it is dissecting, if you will, what stress is like for them because then, we can use that information as a cue to work on how I might respond differently. So, we teach them strategies for relaxation. You all have embraced mindfulness. In our work, we’ve used other strategies, like progressive muscle relaxation, to physically relax the body and do that in a way that’s portable for people to use. We’ve also – oftentimes, people are at a loss for—“I don’t know anything about this disease,” and so, oftentimes, as you all have found, I am sure, that information is helpful. 

But, another big piece that is important not only for CLL patients, but all cancer patients, is this thing we call social support, and a big focus of our work has been helping people to not only receive support from others, because that’s oftentimes very difficult to do, but also, what can they do to ask for support, because people are reluctant to ask as well?

But, it’s looking at their social relationships and helping them to understand how might I enlist the help of significant people in my life, how do I cope with the fact that people’s responses to my request for social support sometimes aren’t optimal, and how to cope with that. But, social support is a huge part of what we try to do.

Andrew Schorr:           

I just wanna comment on that one for a second. So, the other day, I was invited to have coffee with a gentleman in his 50s who was diagnosed with CLL four months ago, is on treatment, and his wife knows; nobody else knows. His teenagers don’t know. His wife has eight siblings, all in the area. Big potential support group. Nobody knows. His aging parents don’t know.

And, we spoke about this burden that he was carrying around by keeping it a secret. But, he was afraid, Barbara, of—he was worried about social report. He knew he’d get it from some people, but he knew they’d get tons of questions and misunderstanding about CLL as a cancer, and whether he was going to die tomorrow. So, he just—not only did he find it easier to just keep it a secret right now, knowing he had a lot of stress with it, but he was worried about if he told people and sought social support, there’d be a downside as well as an upside. Could you comment on that—taking that risk?

Dr. Andersen:  

Well, one of the things we help people to do when thinking about their social life is in some sense, who’s on the page for you? Who are the individuals that you see as being in your social sphere? And then also, thinking about are those individuals that are—that could provide emotional support to me? Are they individuals that are better helping me with things? 

Because not everybody’s good at everything, and so, sometimes people misconstrue when—for example, I remember a woman who said, “I have been so difficult with my dad,” and what she was realizing was she was expecting that her dad would sit down and talk with her about this experience. But, he wasn’t a person that did those kinds of things, but he would come over and do anything for her, but she was just able to see that people in my social environment—not everybody’s the same, not everybody can do all things—and be aware of that, not make negative attributions to people when there’s a mismatch.

But, your point about a person trying to control the information—oftentimes, that’s a product of them trying to control their own emotions, that is not a “CLL will be bigger if everybody knows about it” kind of thing. “I can only deal/cope with so much right now.” For some people, it’s just a strategy to, in some sense, control their stress.

Andrew Schorr:           

I respect people whatever they say, but Paul, do you tell people or your family? Do they know? How do you feel about whether it diffuses the CLL, or keeping it close controls it?

Paul Salmon:   

I think what I’d say is that I’m in an ambiguous state right now, and I’m really not—I haven’t lived through this to the extent that, for example, Mark has. I’m just really awed and impressed, Mark, by your courage and your ability to move through this, and I take a certain inspiration from that. I’m selective about how I share this with family, but I’m kind of in a situation of not yet being symptomatic, so in a way, I haven’t really lived the experience of people who are further along.

So, I guess I’m just judicious about it and don’t make a big deal about it, but if somebody asks, or if there’s an opportunity that would warrant sharing it, I will, but…So, maybe you’ll have to check back at some point in the future and see how it’s gone.

Andrew Schorr:           

Mark, you’ve been pretty public about it. Do you take strength from people? I’m sure there are people now who say, “Mark, how are you?” Obviously, you’re taking steroids now, you can see the effects of it, and there are certain symptoms you’re dealing with. How do you interact with people, and does it give you strength, or is it a downer, and how do you cope with any of that?

Mark Silverstein:         

I think it took a while to accept it and accept it as part of who I am at this point, and I went through—as ridiculous as it might sound, I was laid off from work after I came back from chemotherapy and my initial diagnosis, I had to go find another job, and I found in my interviews, I was just crashing and burning, because I couldn’t talk about why I hadn’t worked for several months, why I was off for a year, and all this other stuff. I finally came to terms with the fact that I had to accept it and actually talk about it, and once I did that, I actually ended up with a job.

The fact is, it is part of my life, it is what it is. Unfortunately, lots of people—I’m their worst nightmare. Someone with cancer is their worst nightmare. They don’t really want to know about it. What they ask is not really specific to the cancer. “How are you?” is not really a specific cancer-related question. So, I actually try to—I wear it; I don’t throw it in people’s faces, but I wear it…not proudly, but as part of my life. It’s actually part of who I am at this point. And so, I don’t shy away from it.

Andrew Schorr:           

Barbara, Mark runs support groups as well as seeing people privately as a counselor. What about support groups—whether it’s informal—I used to have a group in Seattle, where we used to live, and found ourselves on the Internet, all diagnosed with CLL, and actually used to have lunch together, not so much to talk about the CLL, but just to be people. But, what about that—getting together with others and talking?

Dr. Andersen:  

That’s very interesting because we ran groups for years—they were with breast cancer patients—and after our part ended because they were time-limited, it was oftentimes the case that women would get together there after for lunch, just like you were doing. 

People matter—numbers of people matter. Individuals that…are at great risk for their struggle with cancer are those individuals living alone, not having a partner. They’re at great risk for poor outcomes, and that’s not only from cancer, but you can see that effect across diseases. And so, having a confidant—it doesn’t have to be your spouse, but having a confidant is of great benefit in coping with this experience, as you all know. But, for those that do not, it’s a great, great loss.

 Andrew Schorr:

So, just to go back to one thing you said earlier, just clinically, these studies—all these studies you talked about that show that when somebody is internalizing a lot of stress, other physical things happen. So, it would seem like our message to everyone is having an outlet for this stress—a way to dissipate it—can help you be healthier. You may still have the CLL, but you can be healthier. Did I get that right?

 Dr. Andersen:

Yes, you did.

 Andrew Schorr:

All right. So, Paul, to you. You mentioned meditation and mindfulness. A lot of people aren’t familiar with it. I think of going like this and closing my—so, tell me what your routine is. What’s your routine?

 Paul Salmon:

When I think about a routine, I think the important thing—routines can become mindless, and I think you have to be a little bit careful about that, but I do think that there’s a value in establishing intentions that you follow up on on a regular basis. I think an important aspect of meditation is that it’s not really just a solitary activity.

In fact, one of the core elements of a mindfulness practice is connecting with other people. There’s a word for that. It’s called “sangha.” It means connecting with a group of like-minded individuals. I would say that’s one of the most vital aspects of having a meditation practice. You can do a certain amount on your own, and I think that makes sense, but it’s really connecting up with other people on the mindfulness groups that I’ve run. I think maybe Barbara or Phil mentioned that. In the aftermath of these groups, people start forming their own subgroups and start getting together, and you’ve mentioned already that there’s a very important social component.

So, for people who feel like meditation is staring at your navel and sitting in the full lotus position, that’s the Madison Avenue aspect of it, and it’s a much deeper way of connecting with other people. I really feel one of the key elements here is a sense of gratitude. You put your own experience in the context of other people, and you really can be grateful for how things are and what you have, so that, to me, is one of the most vital aspects of a meditation practice. It’s being grateful for being alive and having this moment to really treasure.

So, in regard to social support, of course, I’ve been talking a lot about meditation and mindfulness and how valuable that is, I do wanna say at a personal level, my partner/spouse Susan Matarese has just been wonderful in terms of offering support with this early stage in the process, the initial diagnosis. It certainly was stressful for both of us. She’s a university professor also, and of course, she has a very busy life, but I’ve always felt fully supported and really am not sure how I’d be handling this absent her constant reassurance and help in going through this process.

I think it’s always helpful when you have somebody to bear your burdens and share the joys of life, too. I’m approaching this both as a professional who does a lot of work with stress reduction, but also as somebody who is fully aware and acknowledges the importance of having other people with you. So, my situation is an interesting one because I’m straddling the fence of being an academician, but at the same time, going through this journey. At this point at the early stage, once again, just to emphasize the importance of sharing this journey with someone else, and I certainly wanna acknowledge Susan’s support through this process.

 Andrew Schorr:

Mark, you lead groups in Toronto. So, is this part of it?

 Mark Silverstein:

From my perspective, it’s almost like—you’re a bit of a Martian when you get diagnosed with some cancer. You’re almost cleaved off of society in some ways. Your experience becomes different in some way. So, being in a group situation where everyone’s going through the same thing—it’s very validating. You speak the same language. No matter how close the people around you—your family or everyone—is, unless they’ve gone through it, they don’t quite understand what you’re going through. As much as they may like to, they can’t quite grasp the entirety of the diagnosis and the experience.

And so, I truly believe that a group situation is idea to be able to just not feel alone, not feel like all the things that you’re experiencing and all the things that you’re feeling or thinking—they’re not different than other people.

There’s shades of it and differences, but the fact is the fears are there, the stresses are there, the social challenges are there, the sense of—our culture is very productive, very goal-oriented and being productive, and so, when you’re diagnosed with cancer, and all of a sudden, you’re in treatment, and you’re off for a year or so, and you’re not being productive, and you can’t do what you need to in the house, and you’re not bringing money in, and all that stuff, it is a very challenging thing for your sense of being.

And so, being able to talk to other people and understanding that that’s a normal sense of being within the scope of the diagnosis or treatment—I think it’s really important, and it’s very validating, and I agree: Almost every group that I’ve run, the people afterwards—the individuals—get together on their own, have lunches, and go for walks, and stuff like that. Once again, it’s like the Mickey Mouse Club. It’s a club for you, and everyone gets it within the club. I think it’s very—if you can get into a support group, I think it’s very important and beneficial.

 Andrew Schorr:

I agree. But, Barbara, I wanna turn this around for a second. So, you mentioned some people live alone, and certainly, with the average age of CLL diagnosis being 72, some people may have a spouse or partner, but they may not. But, when we do have somebody perhaps living with us, sometimes, even if we manage our stress, they’re not managing theirs, and that’s stressful for us. So, any tips for these relationships we have where we can have strength from support, and particularly if it’s somebody very close to us that we can’t push away, how we can have them see that they’re stressed out themselves and stress-producing for us?

 Dr. Andersen:

I think that the core of any couple issue is communicating, and communicating about that fact as well. It’s also the case that caregivers, partners—they can simply be burnt out, and that can happen in part if people only rely on their spouse, if there’s no additional people there to support them as well. And so, both the individual with cancer, as well as the partner, need contacts and safety valves other than each other in the system because they have their own support needs. They have their own issues to cope with along with the worries that they have about you.

And, those are potentially difficult conversations, but can come from the standpoint of how can the two of us rely on each other, but how can we also receive the support and help from others that may be helpful to us apart from each other?

Communication is the basis of couples coping with any problem, including that for cancer.

 Andrew Schorr:

Right. I think that’s true. I know it’s been true – we’ve been married 33 years, and 23 years was CLL, and I know Esther speaks with others independent of me. Just what you were saying, Mark and Paul, is I’ve gone to certain groups myself—only patients—and we can talk turkey, if you will, because we all have that purple heart of the diagnosis, and there’s a lot of stuff we get that maybe somebody else wouldn’t.

One thing about couples, though—Mark, I’ve met your wife a couple times, Nelia, and I’ve spoken to her, and we’ve talked about this. So, does she—you’ve been through the wringer with it, and she has too. Does she seek outside support herself?

 Mark Silverstein:

Absolutely, and she actually started a program for care partners herself at our local library to try to give back and help. I totally agree with everything said. It’s extremely stressful, I’m sure, for her. Even though I’m the one with the existential threat hanging over me, she has to live with watching me go through that, and watching someone you love go through that is an extremely stressful event.

After nine years and the ups and downs we’ve been through, I’m sure she’s a little burnt out from the whole thing. I know I am. I’d like to put a rest to it for a while, but I have no doubt she’d like to, too. It’s very challenging. I totally agree that whether it’s other people—I see a psychiatrist who specializes in chronic cancers. Nelia has seen other psychotherapists and talked to other people. It’s extremely important to share things, and it’s also important for the two of you to share things.

Andrew, we’ve talked about—maybe I’m afraid about something. Let’s say we’re going for a test, and I have a lot of fear built up around the results of that test, and Nelia does too, and I don’t wanna say something because I don’t wanna freak her out any more than she’s already freaked out, and vice versa. But, in the end, we end up in conflict because we have so much energy and stress built up that you end up in conflict over it.

And so, we learned the hard way at the beginning to really try and express ourselves, not being concerned with whether I’m gonna overwhelm her or she’s gonna overwhelm me with her fears or my fears. Let’s talk about it. We probably share some similar fears, and that way, it alleviates potential conflict as well, and it also puts you guys on the same page. It becomes a little more of a shared experience. I think that’s a really important part of it, too.

Andrew Schorr:

Amen. Paul, you’re a runner. I do some running, and I used to run marathons, and I certainly can’t anymore. I do some biking as well, and I try to do some exercise because I know that’s stress reduction for me, and I bet it is for you. But, if your CLL progresses—and, it doesn’t progress in everybody, we should say—but if it progresses and you can’t run 15-20 miles a week, you can run less…is that okay?

Paul Salmon:

I think my intention, really, is to be as healthy as I can, whatever circumstances I’m facing. I’ve heard people say, “Why put yourself through all of this in terms of exercising?” In the long run, something’s gonna get all of us eventually, but the fact is that the running that I do now is a source of great pleasure and enjoyment.

I don’t run as fast or as far now as I did 10 years ago, but I’m not really troubled by that because I find a lot of satisfaction in going out for a run, or doing yoga, or whatever else that I do. It really does come down to what’s happening now, and not getting caught up thinking about the future. It’s not that I don’t think about the future, but there’s a lot more pleasure and gratitude to be derived in staying with things the way they are.

Andrew Schorr:

Barbara, are we on the right track for you? You do this all the time. We’ve talked about meditation, we’ve talked about group, we’ve talked about couples, even couples’ communications, couples’ therapy. We’ve talked about exercise. We haven’t really talked about diet. I know stress can be something where people overeat. But, are we on the right track with helping us so that, first of all, we live for today and we don’t have a cascade of other health problems that may follow?

Dr. Andersen:

Right. No, you are right there in the core of what can be helpful to people—that is, choosing what works for you in terms of reducing stress, whatever way that can be, be it a 30-mile bike ride or something different. But certainly, making an intentional choice to do something to reduce your stress, and do that actively.

And, the other piece is that of social support. Hugely important to help not just your management of the disease, but really going through the experience being emotionally fulfilled and connected with other people because that gives people great joy, great fulfillment, a sense of connection, and a sense of this—this is me, too. This is not just cancer, but this is all that comes with being in a social place.

Andrew Schorr:

I wanna just—in this Internet age, just make one comment for people to be aware of, and that is in social media in particular, people are gonna post all sorts of things, and when we talk about CLL, it is very variable. Here you have me, I had a 17-year remission from my initial treatment; Mark didn’t have anything like that. Paul’s in watch-and-wait. We’re all over the place, and how we react to all the different medicines may vary greatly, and now we’re looking at what genes are active in your cancer and what’s your situation at that time.

So, you need a filter for what people are posting, even maybe in a support group, to know, “Is that my situation too? Maybe not quite. Maybe that’s not my journey. That’s their journey, but not…” Even within CLL. So, I think we may need to keep that in mind. I don’t wanna say you need a thick skin, but you need to be savvy and understand the variability of these conditions. But, that said, there’s a lot of strength you can get from people who do wanna support you, and I wanna thank you guys for being with us today.

So, Barbara, just a final comment from you, and then I wanna go around with Paul and Mark. So, stress is real, and we need to pay attention to it, right?

Dr. Andersen:

Very much so.

Andrew Schorr:

Okay. But, if we do, with some of these strategies we’ve talked about, we may not be cured, but we can do better.

Dr. Andersen:

Of course. That’s exactly the case.

Andrew Schorr:

Okay. I wanna thank you for the work you do at Ohio State. It’s a major center for what we’ve got—CLL—and I know you see lots of people there, and I wanna thank you for your devotion over your whole career to this. Thank you. And Paul, you’re in this field too, but now you’re living it, at least with a diagnosis that hopefully is very—the doctors like to say “indolent.”

Paul Salmon:

I’ve heard that word.

Andrew Schorr:

I hope so. But, I wanna thank you, and I know there’s uncertainty, but it doesn’t sound like you’re troubled by that.

Paul Salmon:

Well, I try not to get too distressed about being troubled, if that makes any sense. Stress is a part of life. It makes sense to say you can reduce it, but it’s there. There’s a quick little quote that I put on every email, attributed to Arthur Ashe, the wonderful tennis player, who eventually succumbed to HIV because of a transfusion. But, what he said: “Start where you are, use what you’ve got, and do what you can.” I just find that to be something I go back to time and time again.

Andrew Schorr:

We wish you all the best. Thank you for the work you do at the University of Louisville. So, we’ve got Ohio State, University of Louisville—let’s go up to Toronto. So, Mark, I hope we’re gonna get to talk for a long time.

Mark Silverstein:

I hope so, too. I really do.

Andrew Schorr:

Nobody knows—for you, for me, for any of us. But, I just think the way you’re approaching it and your wife Nelia is so healthy. I know it’s not always—there’ve been highs and lows, but hopefully, medical science can stay ahead of your chronic lymphocytic leukemia. But, great strength to you, Mark. We wish you all the best.

Mark Silverstein:

Thank you so much. Thanks, Andrew.

Andrew Schorr:

Okay. Well, this is our Partners program here. Barbara is in clinical practice; she’s our partner today, and for many people, and Paul in Louisville and Mark, and the three of us living with CLL, and wherever you are, follow these tips, okay? They’re some great ones, and we always appreciate your suggestions. Paul had written into us at Patient Power and said, “I wanna help,” and here he is, so, thanks so much. In California with my friends in Louisville, Kentucky, in Toronto, and up in Columbus, Ohio, I’m Andrew Schorr. Remember, knowledge can be the best medicine of all. We wish you well.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.