Mindfulness and MPNs: Maximizing Wellness Through Meditation, Diet and Exercise - 2 | Transcript | Myeloproliferative Neoplasms | Patient Power


Mindfulness and MPNs: Maximizing Wellness Through Meditation, Diet and Exercise

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:

You asked a great question that I think we should pose to Dr. Mesa. So, she said, where does mindfulness fit in? Let’s say you see people who are newly diagnosed, Ruben.

Dr. Mesa:  

Correct.                    

Andrew Schorr:            

And it’s like a five-alarm fire in your head. And there are clinical things to be done. And Julia mentioned bone marrow biopsy, and we’ve probably all had a few. So, this opportunity now to counsel patients worldwide, where does this fit in? Is it just something that happens later, or can it start at any time?

Dr. Mesa:                      

So, it’s a good question. I think she raised really a couple important points. I think when you’re first diagnosed with an illness, particularly if it’s the first kind of difficult or chronic illness that you face, that’s a very difficult milestone with any of our lives. I mean, and there’s a grieving process. You’re grieving the loss of good health. We all think we’re invincible. And when we get diagnosed with something, that really shatters that. And there’s a process that one has to go through.

I think at the beginning, there’s a tremendous knowledge gap. There’s anxiety. So, I think in many ways, there’s a period of really both kind of medical stabilization as well as emotional stabilization after you face something. And that could be—whether that’s breast cancer, or PV, or diabetes, there is an adjustment that occurs. But I think after that part settles done and you’re really in a stable phase – that might be a month, that might be six months—everyone is gonna be a little different – I think then when the dust is settled is where these additional parts really can really come into play. Trying to help yourself feel better by living the healthiest lifestyle you can, eating better, being active, and then all of these other pieces.

I think if I were to try to have that conversation with a newly diagnosed person, I think it would just be too much information all at the same time, and that would kind of get lost. I think these are important but complementary things after that period of adjustment, both medically as well as emotionally.

Andrew Schorr:            

Well-said. So, Samantha, maybe this was this way for you. I know when I was diagnosed—I was diagnosed with leukemia, chronic lymphocytic leukemia, way back—I was 45. Older than when you were diagnosed, but – and then later, I guess it was six years ago, with straight to myelofibrosis. And so, I’d already been living with a blood cancer, so I kinda new the drill. But it was still pretty scary. And you do go through that grieving process that Dr. Mesa mentioned.

Now, we’ve mentioned about diet a little. So, do you do anything special in your diet? We talked about walking the dog, and going to the gym, and really living in the moment. What about diet?

Samantha Trahan:         

Well, I was always a pretty healthy eater, but I would say there are some definite things that I do. I flat-out don’t eat fast food. If I’m traveling and I’m starving, I will stop at the next-door gas station and get peanuts and a bottle of water. I do not eat fast food. It’s hard for your body to process. I also generally follow a plant-based diet. I’m not perfect at it, and cheese is delicious, and sometimes, so is a sliced turkey sandwich. But I do feel like I want to give my body what’s easiest to process in terms of food that makes me feel the healthiest and makes me feel the best. 

And for me, I tried a couple of different things—Mediterranean style, just a – what is it, like a rainbow-style diet where you eat all the most colorful foods. But I find that following a pretty straightforward plant-based diet, mostly roots vegetables, beans, legumes, other sorts of plant-based proteins, I feel the best. And so, that’s what I follow. I do think it’s a very individualized course that you have to – that everybody has to find. What is it that makes you feel the healthiest? But for me, making that shift onto that type of diet made me feel the best. And, after coming off of one of the trial drugs, Momelotinib, where I gained a pretty healthy chunk of weight, it’s also been what’s helped me best moderate my weight.

Andrew Schorr:            

So, Samantha, do you think beyond feeling better, it’s also feeling more in control, that you’re doing what you can do?

Samantha Trahan:         

Yeah, Andrew, I think that’s absolutely part of it. I mean, I can’t do anything about what is going on in my bone marrow. I can’t stop the scarring. I can’t stop the random blasts that are popping out. There’s nothing that I can do to fix that problem. I can, though, fix how I approach my daily life, and treat my body as well as I can so that it’ll work harder for me. And that’s how I envision it. So, when I give my body junk, it has to work hard to overcome what I’ve just done to it, and it’s combating against this PV slide into myelofibrosis. So, if I eat well, then I’m doing my part. And now I’m counting on my body to do the rest of it. I’m 43 years old, was diagnosed 17 or so years ago, and I—which was before JAK2 was even found or published, right? So, I came into the MPN world with a complete dearth of knowledge. We’ve learned so much since then. It’s been 17 years. 

I’m hanging in there for the next 17 years. And to do that, I really do feel like this bit, I can control. I can control how well I treat my body. That’s it.

Andrew Schorr:            

Wow. Well-said. Julia, you’d probably say – echo that, right?

Julia Olff:                      

I would. I guess I would add to it, I was diagnosed in my forties when I was very thin and otherwise very healthily. Similarly, I’ve been a foodie all my life. Food is, to me—like, a day without good food is not a day worth living. So, taste drives my joy and my choices. But now that I am in my mid to late fifties, my body’s changed a little bit. I think I’ve been healthiest, and I’ve talked about this in the past, when I was following a Weight Watchers diet, because it is essentially pumping up the fruits and the vegetables and reducing the fatty foods. I, though, feel like for long-term success, I need to give myself the joyful foods.

So, that includes the croissant and the cheese. And I’m going to France again in February, and I’m going to eat and enjoy myself. But I also hope to walk a lot. So, I do think it’s like investing. And when I was diagnosed with ET initially, I couldn’t understand—very much like what Dr. Mesa was saying. I was healthy otherwise. I was one of those people that never took a sick day. Like, how did I get this illness? And it took time to even process that. But now I think that maybe I—my otherwise healthy immune system and a lifetime of my mother introducing meals that always included fruits and vegetables is paying off in the sense that it’s helping me be healthier with myelofibrosis.       

Andrew Schorr:            

Mm-hmm. Okay. And for me, same, is I feel like I’m doing what I can with the uncertainty that Dr. Mesa spoke about, not knowing what’s next, but in every day, just living as well as I can, doing what I can. One of the terms that come up sometimes under mindfulness is gratitude. And I wonder—we’ve talked about this a lot across cancer, really, is has cancer changed you? And maybe, had you get to a point after the terror of the diagnosis to try to be thankful, to have grace? Ruben, you’ve probably seen the change over the years in your patients as they’ve picked themselves off the floor and maybe gotten to a better place. I’m sure you’ve seen that many times.

Dr. Mesa:                      

Well, I think without question, I really think what you speak of is perspective.

Andrew Schorr:            

Mm-hmm.

Dr. Mesa:                      

I mean, life is a roller coaster for each of us, with challenges both health and non-health. And kind of how we walk that path clearly impacts us to a great degree.

I’ve seen patients, again, who have very advanced illness, but their perspective has brought them tremendous consolation and decreased anxiety, whether it be—the patient sometimes with the advanced disease that has participated in clinical trials that feel genuine satisfaction that even if that doesn’t help them, that it will help people that come after them. I’ve seen people that have really enjoyed altruistic activities. Even though they are ill, they’re volunteering. They’re doing things with philanthropy. They’re giving back. They’re helping other patients who are newly diagnosed to try to alleviate their anxiety and stress, because they have gone through it. Just like all of you are participating here today, this will help other individuals that are newly diagnosed and scared and uncertain—this will be a resource for them.

So, I think that is an expression of gratitude for everything that we do have, really the glass is half full sort of approach, and realizing that we always have something to share, even when we have our own struggles.

Andrew Schorr:            

And I know that Julia, you do peer-to-peer discussions with other patients for the Leukemia Society. Samantha, I’m sure you’ve talked to many patients over the years. Julia, that giving back, does that help you too?

Julia Olff:                      

Absolutely, as does participating in this kind of program. I feel like I always learn a little bit in the discussion. Every person is different. I enjoy the – hearing about someone else’s experience, not—I don’t enjoy their sadness. But yeah, there’s something about the connection, sometimes about trying to help someone else who’s really struggling that just—I don’t know. It’s an endorphin high. You feel better.

Andrew Schorr:            

Samantha, you’ve had a long time to meet other people. Is that kind of connection with other people and trying, all of us, to raise each other up, that must be helpful.

Samantha Trahan:         

It is helpful. I think it’s helpful on an individual basis, and I think it’s helpful across the entire MPN community. I tried it both ways. I started out first being very much alone and didn’t want to talk about my disease. I didn’t want to – I didn’t go to the conferences or any other events. And I felt very alone, and an anomaly outside of the system. And I didn’t know how to deal with it, and I don’t think I dealt with it all very well. Having become more open about my disease, and gone to some conferences, and participated in these events with Patient Power, I personally feel better, and I like knowing that I’m connected to a growing community of people who also care. And I think that’s—when you talk about gratitude, I am so grateful to be a part of a community that is open and wants to help one another.

Andrew Schorr:            

I’ll tell you, Esther and I are going to New Zealand. Ruben, you’ve probably been. We’re going to New Zealand.

Dr. Mesa:                      

A great spot.

Andrew Schorr:            

A great spot. And so, I’ve connected with the MPN community both in New Zealand, and we’re gonna skip over to Melbourne, and they’ve been so welcoming. And we’re gonna get together. And that means a lot to me. And I think also, as Esther meets other care partners, that will be helpful for her. And the goal of all of this is for all of us to feel more in control, support each other – and I’ll just recap some of these activities as we get near the end of our program. For some, it may be meditation. For some, it may be walking the dog, like Samantha walks Sammy, and Julia still takes walks. For some, it may be eating foods that are joyful, like that croissant. Boy, good for you, Julia. 

And it also may be, since we have Dr. Mesa with us, feeling good about open communication with a provider you’ve selected who’s knowledgeable in MPN, where that conversation can give you confidence. And that’s part of it too, Ruben. I just want to say, what’s your word for open communication with the MPN doctor you have and how that can give confidence, and that’s part of support as well?

Dr. Mesa:                      

Oh, I think without question. I think there’s tremendous anxiety if you don’t feel that you have good communication with your healthcare team. So, I think that communication is crucial. I think it’s also crucial, as I’ve heard both counselors discuss, integrative medicine specialists—I think it’s perfectly fine and appropriate to have more people on that team. Your expert hematologist is not trained in all of these other areas. And I think having others involved with that team fairly transparently along with your doctor, I think, is crucial.

I think they’re complementary resources that can be incredibly helpful. I think it’s important for them to know what you’re doing, but in the ideal world, for there to be good communication kind of between, ranging from the things we’ve discussed, but even others, such as with the acupuncture or other things like that that people have found sometimes great relief from, I think in most cases, probably safe. But again, always best, particularly new physical activity regimens—always best for your doctor to know what you’re doing. They’re there to help you. And if for whatever reason you feel that your relationship with your doctor is one that you don’t feel comfortable doing that, then I don’t think that’s a good relationship. So, although I almost never counsel folks to find another doctor, I think if you ever find yourself that you just can’t be 100 percent honest with your doctor, then something is wrong, because your doctor is there – solely there to help you. So, if you can’t be honest with them, you need a different doctor.

Dr. Mesa:                      

And that’s from the director of a major cancer center, folks, so it’s really important to hear that. So, I just want to tick off a couple of things quickly. So, first of all, on Patient Power, there are a number of other programs. We have a cancer nutritionist. We’ve done a number of programs. We have a number of other—we have a number of programs even now on yoga and meditation. Take a look at those. There was a really cool one on our Facebook page recently, a Facebook live broadcast with our yoga expert. So, take a look at that. Diet. We have somebody else showing some exercises you can do at home. 

And Julia, I know you’ve had some debilitation with myelofibrosis. Would you say, though, that whatever you do, let’s say when we talk about exercise, is to the good, even if it’s not as much as yesterday, or not as much as last week or last year?

Julia Olff:                      

Absolutely. And I think getting outside, for me, is particularly restorative. So, having that routine of getting outside, feeling the sun on you if you’re lucky enough to have some sun, looking at the sky, getting out of your space, especially if you spend more at home—I do, and I work part-time from home. So, the walls can feel—that can sort of bring your mental state down. So, having—just getting outside and into the environment, I think, even if it’s 10, 15 minutes, is just really helpful.

Andrew Schorr:            

I just want to get final comments from each of you. So, I’ll start with you, Ruben. So, what would you say then, when we talk about this mindfulness thing, you continue to do research with other colleagues around the world. Maybe it’s not specifically quantified just yet, though, and we’re all on this long cancer—hopefully very long cancer journey. What would you say to people watching just about, if they can, making this part of their life?

Dr. Mesa:                      

Well, I’d say that mindfulness, in a broader way, is saying that in addition to medicines, there is a lot more that can be done that you can do to really try to help yourself feel better and to have a better quality of life in a range of us. So, working with your doctors or others to try to find what is helpful for you. I think there a whole variety of different safe options out there. We hope to study them better, but I think to some degree, there’s even some trial and error. But clearly, it involves your engagement. And as I tell people, there is no thing from a prescription pad that is going to completely make you feel the way you want to feel.

Andrew Schorr:            

Mm-hmm. Julia, final comment from you for people watching who maybe have never done any of this before?

Julia Olff:                      

I’m listening to Dr. Mesa and just sort of shaking my head internally and externally, because I think that’s—it’s taken me a while to realize that I ca—there are other things that I can do. Even though I’ve talked about eating and exercise, thinking about other ways of making yourself feel better outside of medication has been scary because I’m, like Samantha, off medication right now, except for aspirin. But it’s also—there’s something actually empowering about that. There’s something that I didn’t realize is a sort of good thing, and now I’m starting to embrace that.

Andrew Schorr:            

Well, we wish you well…

Julia Olff:                      

Thank you.

Andrew Schorr:            

…on your journey. And Samantha, you’re not old, but you’re sort of the old-timer, in that you’ve been living with these MPNs for quite a while. So, what would be a final comment to our viewers as far as considering some of these practices to try them out?

Samantha Trahan:         

Yeah. I would say to remember that taking care of yourself is important. And it’s not selfish to set aside time for yourself to try some of these things. It’s much more than just taking whatever medication is prescribed to you, and then filling your busy life with all sorts of other things that you’re doing. Set aside time. Make a list of these other activities and try them out, whether that is taking an hour in the morning and trying out yoga, meditation—go see a therapist, a counselor, integrative medicine, exercise, research different diets and see what might suit you. But be kind to yourself and know that you are important, and your overall health is important, and be—and take that time for yourself, and just—and try it.

Andrew Schorr:            

Amen. And I do it often with my spouse of 33 years, so we do it as a team. And I think—I know it helps her as a care partner, and it helps me. Well, we’ve had a wonderful discussion. Dr. Ruben Mesa from San Antonio, thank you so much. You’re a busy guy, as the Director of the Cancer Center. Thank you, Ruben, for your devotion to all of us with MPNs and the research you continue to do. Thank you for being with us once again.

Dr. Mesa:                      

Thank you. Thank you.

Andrew Schorr:            

And Julia Olff in Westfield, New Jersey, I dream of you having a wonderful time in France…

Julia Olff:                      

Thank you.

Andrew Schorr:            

…eating croissants and other foodie kinda things, walking and managing your weight, but feeling great about it.

Julia Olff:                      

Thank you very much.

Andrew Schorr:            

Okay. And Samantha Trahan in Houston, may you have not just another 17 years, but how about like 30 years?

Samantha Trahan:   

Absolutely.      

Andrew Schorr:            

Okay. Thank you so much for being with us today. I’m Andrew Schorr. We’ve been around the country. We were in San Antonio; Westfield, New Jersey; Houston; I’m in Los Angeles. All of us as a community all rising ourselves up together, knowing we’re not alone, and knowing that we can take steps to take back some control so we can enjoy the moment, enjoy the day, and even if there’s some uncertainty, not worry about it so much, and go on with our lives. And we’ll leave it to Dr. Mesa and his medical colleagues to cure MPNs, okay, Ruben?

Dr. Mesa:                      

There we go.

Andrew Schorr:            

There we go. Okay. Andrew Schorr for Patient Power. Thank you for watching. And remember, knowledge can be the best medicine of all.

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.

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Page last updated on November 1, 2018