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Terry's Story: The Benefits of Being Proactive and Joining the MPN Community

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Published on February 12, 2015

Transcript | Terry's Story: The Benefits of Being Proactive and Joining the MPN Community

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.

Jeff Folloder:

Terry, you were diagnosed back in 2009.  Take me through that—that trial that you went through. 

Terry Roper:

Well, it all led up actually from the first year because my employer was gracious enough to financially induce me to change insurance plans.

So I went in, and I decided, well, I've got this allergy issue.  I've got this itching issue.  So I went in to my second primary care physician sent me in to allergist, and he runs the tests and he says, Terry, you don't have allergies.  You've got hay fever, but you don't have allergies.  I think you're having TIAs. 

Jeff Folloder:

And what is a TIA? 

Terry Roper:

Oh, it's basically a mini-stroke.  I have a hard time pronouncing the—it's trans ischemic…

Dr. Di Bella: 

…transient ischemic. 

Terry Roper:

Thank you.  Thank you. 

Jeff Folloder:

There's a reason why we have the doctors up here. 

Terry Roper:

Exactly.  And so he says, no, there's—he says, you need more workup, so between starting to have more blood panels, going to the neurologist, they sent the results back to my primary care physician, and it was really odd. 

He says, “I could treat you for what you've got going on, but the way things are set up in the system I need to send you to a hematologist.”  I'm like, “ell, this is weird.”  I'm like, “Why—okay.”  So I went and saw my first hematologist, and she said, “Oh, you have essential thrombocythemia,” and gave us a little bit of information and says, “We need to put you on hydroxyurea (Hydrea®).”  I said, “Oh, so you're going to put me on chemo.”  Well, it is, but it isn't.  And that was my first sign that I knew I was probably going to have to change hematologists. 

Jeff Folloder:

So are you taking anything now? 

Terry Roper:

Yeah, so now I take hydroxyurea twice a day, and I take an aspirin to try to thin the blood down. 

Jeff Folloder:

I understand from the notes here, "Very proactive in his own care."  I get the distinct impression that that's an understatement. 

Terry Roper:

I've gotten really bad about being a little too assertive probably. But I came to the realization that if I don't advocate for myself, if I don't ask the hard questions, I'm not going to get the answers to the hard question.  And one of the things that really upset me with my first doctor was, well, you kind of have cancer but you don't. And I'm like why are you sugar—sugar-coating this because I'd already been through severe basal cell and squamous cell carcinoma on the face to the point that I had a divot here. And I used to make jokes about I got that so that if I ever go golfing, I don't need golf tees.  I can just tee off my face. 

Jeff Folloder:

Nice.  So you're a proactive patient. 

You spend a lot of time advocating for yourself.  You've been married for 40 years.  How many children do you have? 

Terry Roper:

We have eight. 

Jeff Folloder:

Wow.  So no matter what, retirement or not, you've got a full?time job, right? 

Terry Roper:

Yeah, and I'd like to be able to retire.  I probably won't for quite a few years yet, but, um, if I don't stay busy I know I'll—I'll go downhill worse than I am now.  I mean, we talk about the exercise, and on average I'll do probably 9,000 paces a day and it's probably not enough exercise for me. But I'm trying to keep—maintain myself, my physical activity and the mental activity. 

Jeff Folloder:

You are using the online community to help as one of your primary resource providers.  Is that a good place to go for backup, for this psychosocial part of what's going on? 

Terry Roper:

I think it's partial yes on that question.  I'm a member of the ET, the MPN and the MF of Facebook groups.

And I think those communities are huge to assist people in sharing feelings when they need to, sharing grief, letting off steam, and for people to—and even to ask about, well, I'm having this symptom, has anybody ever experienced that? But at the same time, I think we need to exercise wisdom and—is the information that someone is sharing, is it factual?  Does it really apply to me?  But we need to filter it. 

But I also think it's important that if we have the opportunity—particularly as men—to share our feelings with other men. 

Now, I've been really blessed that we had a couple move into our church congregation, and he still had the PICC line in his—up in here somewhere.  He had just been through I think non?Hodgkin's lymphoma. 

Jeff Folloder:

Okay.  

Terry Roper:

And we had—we had that bond of the C word.  We had the bond of the leukemia word, and so when—on Sundays we always kind of check in with each other.  We saw each other last night.  How are you doing, Terry?  Oh, I'm doing okay.  Steve, how are you doing?  Oh, I'm doing okay.  Well, we understand the “okay” word.  I can look at his face, I understand.  He looks at me, he says, “Oh, you've had a rough couple of days haven't you?”  And so I think as men that we need to develop that if we have the opportunity to.  And I think online can be a way to do it. 

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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