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Managing Uncertainty With Myeloma: Creating a Day-by-Day Strategy

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Published on December 18, 2017

Troubles are a guarantee in life, so how do you manage the uncertainty? Andrew Schorr and myeloma survivor and lifestyle columnist Danny Parker discuss how to manage the storms that will come, not only with myeloma, but with life in general. Watch to learn Danny’s tips for coping.

The Living Well With Myeloma series is a Patient Empowerment Network Program produced by Patient Power. We thank Celgene, Takeda, Amgen and AbbVie for their support.

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Transcript | Managing Uncertainty With Myeloma: Creating a Day-by-Day Strategy

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:

So it sounds like you have a day by day strategy, and you’ve had this for years, to knowing that there’ll be these storms, that can buffet your life. How do you do that, Danny?

Danny Parker:   

That’s right. So that’s gonna happen, so you can count on their being troubles, in your life. Not only if you have myeloma, but otherwise. So, something Laurie said, though, I want to emphasize, which is, one thing you can do is, make—learn to just make your best effort, right now. And that creates kind of a no regrets policy, in terms of how you’re doing things. Because, as we’re hearing from Robin, we don’t know exactly what’s going to be happening next. And especially with this disease, we really don’t know what’s gonna be happening in six months, much at all. But we do know what’s going on right now, and we can make our best effort, at the moment, in terms of talking to our doctors.

Trying to get very clear information, and working with our body, in terms of, what do I feel like I need right now, to be healthy? What do I need to do, knowing that I’m going to be taking dexamethasone (Decadron), which creates real problems for many, many patients, in terms of your mental well-being? So make a plan. So you make a plan now. I know I’m gonna have dexamethasone on Friday. So, okay, so on Friday night, I’m going to have a plan for some activities, in terms of what I’m going to be doing at 1:00 in the morning, when other people, more reasonably set, will be sleeping.

 

So you make your best effort now. This is a large part of what mindfulness activity is about. You make your best effort now, so that you’re not having to have regrets later, about exactly what you did. Relative to worry, worry is always about what’s going to happen in the future, which we don’t know. I think, supposedly, worry is a sign of intelligence. So if you’re worried a lot, it means you’re a human being, for one. But it also means you’re probably a pretty intelligent human being. But it’s also pretty uncomfortable.

So one of the things that you learn to do, with these activities, is not to abandon yourself. That is, if you’re making your best effort, don’t say it’s not good enough. You can say, yes, it sucks, or it’s terrible. I really don’t like it, but you don’t have to abandon yourself. You can realize, I’m making my best effort, my doctors, I think, are making my best effort, I’m trying to do the very best I can. My caregiver—I’m trying to take care of her, in my case, too. And so that she’s not being abused, relative to the system. And, when you’re taking dexamethasone, that’s a reasonable consideration to have. So, anyway one thing I do want to point out, and this is important, is, it’s not just meditation. 

It’s not just sitting on a cushion or something like that. This kind of activity works very well, if you have a daily walk, or you have a habit in the morning, where you’re going to have your coffee or tea alone, so you can actually kind of take in the day, so it’s not just sitting on a cushion, or this sort of thing. So there are other ways of doing this. 

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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