Adjusting to Life With an MPN: What Happens After Diagnosis?

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Topics include: Patient Stories

In this Patient Power program, Andrew Schorr is joined by patient advocate Beth Kart Probert, Dr. Laura Michaelis and Erin Blackwell, RN, to discuss how to adjust and go about life after being diagnosed with an MPN. Beth shares her personal experience adjusting to her diagnosis and how she has coped. Dr. Michaelis says she tries to help patients adjust to their diagnosis by telling them to put their worries on her instead of themselves and helping them feel more in control through developing positive habits. Erin discusses counseling patients after diagnosis and says her key to helping patients is, "understanding what life looks like to them, what they enjoy about it, what’s important to them, and how we can get them back to doing those things."

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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, Beth, you’re living with this diagnoses that you’ve had for a year or so. So how have you gotten your head on straight about it to go on with your life?

Beth Probert:    

Well, I knew right away that if I looked at my diagnosis as somewhat of a gift, and I mean that by I was running around, I had so many other priorities, I had no clue that anything was really wrong with me. And I shudder to think what might have happened had I not gone for that CBC. You know, I really had a very serious medical condition at the time. 

And so I took the attitude that I need to be gracious I was diagnosed, because looking at the alternative it could have had terrible consequences. And I realized—you know, it took me a couple of months to get my feet back on the ground, so to speak, to just be calmer.

And I really had to start doing some things that people had always said. Oh, you have to have balance in your life. Or you should exercise more; you need to take time out for yourself, or you need to meditate. And I just realized that I need to really be more balanced, mind, body and soul if I was going to go through this medical journey.

So I started doing some different things that worked for me. I wasn’t so good sitting there meditating, but I learned to meditate and walk. I started embarking on yoga. I really embraced myself in a plant-based diet for various reasons. It was working well for my daughter for her autoimmune, and I thought there was a lot of merit for helping me. And with that came learning how to cook again; with cooking came more peace and time to think.

I know that’s sort of a long-winded answer, but I had to do things differently to be able to understand that I want to live life to the fullest. And if I’m running around always worried, freaking out about this new diagnosis and my medical challenge, I wasn’t going to make it. I really had to be balanced mind, body and soul.

Andrew Schorr:

Well said; I think that’s true. So, Dr. Michaelis, you have people come in. Whether you make the diagnosis or confirm a diagnosis, they’ve come from somewhere else, and they’re pretty alarmed. The family members are alarmed as well. Yet, all of us want to take back control. We feel out of control; this disease we have never heard of. How do you help people? How do you counsel them, so they can go on with their lives? 

Dr. Michaelis:     

One of the things I do is tell people that I’m paid to worry, you’re not.

My job is the worrying job. Your job is the living job, and so let me do the worrying. You know, I’m used to worrying about these things. I know what to worry about, and that’s my job. So my job isn’t cure. I try and heal, but I’m not a curer. I try to heal the best I can. If something is curable, I’ll do that. But I am good at worrying. So that’s what I tell people to leave in the office.

The second thing is that most people have gone through episodes of their lives before where they’ve felt out of control, and things get you through that—either your family, or the people you love that are around you, sometimes exercise or meditation. Sometimes it’s venturing back into positive habits like good eating like Beth was talking about, or being outside in nature. Some people are grounded in faith, something that makes you feel bigger than yourself. Those same strategies are helpful when you face the grief of a diagnosis like this.

And it is a grief. You’re leaving behind a perception of your body that’s not true anymore, because you’ve been diagnosed with some crazy disease that you’ve never heard of. So it is a process. I would say, Beth, three months is a great time to be able to have gotten grounded again, and I think the strategies that you used in sort of learning from your daughter is incredibly positive.

But you’re right. This is a new chapter for people. Like, you thought you were traveling along in one country, and then the road took a turn, and you’re in a different country. So you just have to sort of say well, I want to drive safely, but I also have to enjoy the landscape here. So that just means you have to adjust.

Andrew Schorr:

I’m just going to make a comment as someone now living with myelofibrosis four-and-a-half years. So it was terrifying, and my spleen is somewhat enlarged, so it’s a reminder that it’s there.

I have my medicine right next to my toothbrush morning and night, so I’m reminded then. But the rest of the time, I just go about my business. And I think, and Beth you can probably relate to this, and I’ve said this a number of times. In our lives, we have people say can you go on a hike with us, or can you come over for dinner, or can you take 10 minutes, and let’s get coffee? And often the answer is no, because you’re so busy. 

I've routinely tried to make my answer yes. And, Beth, I don’t know if you, too, maybe you could say stop and smell the roses, but it’s take time out to enjoy.

Beth Probert:    

I could not agree with you more, Andrew. I realized that I was just going a mile a minute all the time and putting things off and people off.

And you do, you really do reflect on who that inner circle is that you want around you and making time for them and enjoying that time. So yes, I absolutely agree with what you just said.

Andrew Schorr:

Erin, I’m sure you’ve had patients who’ve seen Dr. Grunwald or Dr. Gerber maybe for the initial diagnosis. They’re really troubled. And then over time, how have you counseled people to help them really just go about their lives, enjoy their families, enjoy their work, travel, whatever is important to them?

Erin Blackwell: 

I think that’s the key is finding out what is important to them, and then you can really help them understand that although this is a diagnosis that affects how they live the rest of their lives, and in no way should we minimize that. But we also want them to be able to do what you do, where you take your medication and you go about your day the way that you would like to. I think a large part of the reason our patients don’t always do that is how they feel.

A lot of times they suffer from fatigue, either from anemia or secondarily or just from the disease itself.

It’s hard for them to feel up to doing those sorts of things, so I think it’s really important to find to what kind of lifestyle they lead, how we could maybe improve upon that and then involve any members of the interdisciplinary team that we need to. Sometimes patients need social support, sometimes they need—we have a social worker on campus that’s able to help patients especially with that first visit it they’re having trouble coping.

We have resources available that can help these patients. But I think the key to it is understanding what life looks like to them, what they enjoy about it, what’s important to them, and how we can get them back to doing those things.

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 June 1, 2017