MPN Patient and Care Partner Share Tips for Communicating With Your Care Team

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MPN Patient and Care Partner Share Tips for Communicating With Your Care Team from Patient Empowerment Network on Vimeo.

MPN Care Partner, Jeff ,and Summer, who is living with myelofibrosis, share how they communicate with Summer’s care team. Jeff shares how important it is to develop a relationship with your care team and find what communication method works best for you.  

See More from PEN-Powered Activity Guide 12

Transcript:

Summer:

Oh, Jeff. I’m almost out of my Jakafi. I have to get some more.  

Jeff:

Well, I guess we’ll have to give Dr. Tanaka a call, right? 

Summer:

Hi, I’m Summer. 

Jeff:

And I’m Jeff and we’re here to talk to you today about communicating with your health care team, and it’s very important to develop that relationship. Tell folks about our health care team, Summer. 

Summer:

Yeah, we’ve got a great one. We have my doctor, Dr. Tanaka, the nurses and the specialty pharmacy that takes care of my Jakafi. Should I explain about that? 

Jeff:

Yeah. 

Summer:

Okay. The pharmacy lets me know when I need new medication. It tells me when it comes in. I’ll let them know when I’m going to pick it up. They even offer to deliver it but I don’t think it’s a good idea to have expensive drugs delivered to your porch. So of course, I pick up. It’s no big deal. 

Jeff:

And why do we have to use a specialty pharmacy instead of going down to the local pharmacy? 

Summer:

Because they have more time and they really keep track of everything. They let me know if there’s a change, they have a question, everything. I really trust them. And they always tell me when the medicine comes in. And if it seems a little late, they call and let me know. 

Jeff:

The way we communicate these needs is great for us. Every one of you who has a health care team is going to have a different way of communicating and you really need to learn to use it. We’re very fortunate. We use the University of Southern California health care system here and they have a portal online. They call it the patient portal. It’s called My Chart. And you can send messages to the doctor and your health care team, they can send you messages, you can request refills on your prescriptions there, and you could also make appointments and you can view your test results. Summer, you get a test often, right? 

Summer:

Once a month. 

Jeff:

And so, we go in and get that, and within the afternoon they usually have our test results and we can look at them. So, we’re very fortunate. If you have one, if your health care organization has such a system, learn to use it. That is your prime communication way of communicating with your health care team. You may be in a location where you can’t do that, they don’t have such a fancy thing, or your cancer may not require that kind of communication, but whatever way you develop learn to use it. It’s really important to develop a way to communicate with your team. And that’s pretty much it for our subject this month. Till next time. I’m Jeff. 

Summer:

I’m Summer. Bye. 

Jeff:

Bye. 

Managing MPN Fatigue During the Holiday

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Managing MPN Fatigue During the Holiday from Patient Empowerment Network on Vimeo.

MPN Care Partner and Patient, Jeff and Summer discuss how to manage fatigue during the holiday season. Summer tracks her and ensures she’s walking daily. Jeff shares to never overschedule yourself and make sure you prioritize your rest.

Transcript

Jeff:

Hi I’m Jeff. 

Summer:

Hi I’m Summer and this is Zelda. Say hi. Say hi, Zelda. 

Jeff:

And we’re your Patient Empowerment Network Leads for the myelofibrosis blood cancer, myeloproliferative neoplasms. And we’re here to talk to you today about fatigue. Oh my gosh, Summer, we’ve got improv in half an hour. 

Summer:

We’ve got two Starlighters parties. 

Jeff:

And we’ve got a Christmas party on the 11th. 

Summer:

And we’re going to go to a concert and the Nutcracker Ballet. 

Jeff:

All of those things happening during the holiday season. 

Summer:

And Christmas shopping. 

Jeff:

Oh, Christmas shopping, I forgot. That’s exhausting. Are you going to be able to handle it? I know fatigue is a real symptom of it, of myelofibrosis. 

Summer:

Well, it’s a symptom of it as long as you handle it. But I always get eight hours sleep and on my phone, my Apple Watch records my sleep. And I get a 100 sleep score. And it makes a huge difference. Plus I go to the gym and I do exercise and walking for one hour every day to get my 10,000 steps. 

Jeff:

And the exercise helps with your fatigue? 

Summer:

Yeah, it makes me tireder. Of course. 

Jeff:

So, you sleep well and you track it so well. She’s even got me tracking my sleep and I don’t have myelofibrosis. But we check in with each other to see that we get enough sleep. And we’ve also adjusted our schedule, haven’t we? 

 Summer:

Yeah, we have our performances at our theater a lot more matinees which is good because older people, no matter what, like to do things earlier anyway. 

Jeff:

So, we’ve made significant adjustments in our life to deal with the fatigue portion of myelofibrosis. And we’ve made even more in this holiday season by scheduling things correctly and doing what you’ve just described. 

Summer:

I mean, at 1:15 we’ve got a rehearsal, improv rehearsal. Then we have people that want to check our theater. Then I have another comedy rehearsal and Jeff has a guitar singing rehearsal. 

Jeff:

We would encourage you folks to do the same thing in this holiday season. Don’t over schedule yourself. Get enough rest and have a happy holiday. Bye from Jeff. 

Summer:

Bye from Summer. Bye from Zyada. Say bye bye. 

Jeff:

We’ll see you next time. 

MPN Patient and Care Partner Share Clinical Trial Experience

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MPN Patient and Care Partner Share Clinical Trial Experience from Patient Empowerment Network on Vimeo.

MPN Empowerment Leads Jeff and Summer share their experience participating in a COVID-19 clinical trial. Jeff believes that if you get an opportunity to participate in a clinical trial, you should take it. There are so many new medications in the pipeline for MPNs and you can help change the standard of care for future patients.  

See More from Jeff & Summer

Transcript

Jeff:

Hi, I’m Jeff. 

Summer:

Hi, I’m Summer and hi, I’m Zelda. 

Jeff: And we’re your Network Empowerment Leads for the Patient Empowerment Network and we’re the leads for the myelofibrosis section, which Summer is a myelofibrosis patient. And we’re here today to talk to you about clinical trials. And we’ve had some experience, but what we’re going to tell you about today is not a trial that deals with myelofibrosis. But our experience in the COVID-19 vaccine trial for Moderna at University of California San Diego. And tell us about how it started, Summer. 

Summer: Well, I’ve never been in a trial test before, and neither have Jeff. We went to UCSD, to where it’s conducted, and they were very friendly, very nice, very encouraging. But the strange thing, one of the things is I thought there’d be a huge waiting room. And they took us right in, and the whole time we were there, I didn’t see anyone other than the staff. So, I went in one of the rooms, and various doctors and nurses and assistants came in to take blood, to take my temperature, to ask me medical questions, things like that. The whole thing took probably about an hour and a half, and they were very encouraging. And then the last person that came in said, well, I’ll be back in a few minutes, and I’ll bring the vaccine in. So, I thought, oh, I guess I made it. But then when they came in, he said, no, you consulted with another doctor, because I have myelofibrosis that could slant the test. So, I wasn’t able to sign up and help people. But I do remember another thing about COVID. I was in the first group, because I’m older and have a disease, to get the vaccine. And I remember it was at Petco Park in San Diego, and there were so many people there that people had to park blocks from there. And that’s fine. Walking is no big deal. There were a lot of really old people that could barely walk, and they were going, I’ll never forget that. 

And there was one woman that was very overweight. She was in a walker. The poor old thing could hardly walk. So, I remember I walked behind her the whole time, because I thought I can call for help if anything happens. But I still have that picture. And here’s Jeff’s view. 

 Jeff:

So, I went up with Summer to sign up for the vaccine test as well with UCSD. We thought we could make a difference and help. So, I went through the same, they gave everybody the same thing. Different doctors and nurses and assistants came in. They took your blood. They took your medical history and so forth. And then they went out of the room and left me there. And they came back in, just like Summer. And for me, they came back in with a hypodermic needle filled with vaccine or placebo. And they gave me the shot. And of course, they don’t tell you whether you had the placebo or the vaccine. And they sent me home. But before I went home, they had me load this little app onto my phone. And I have to fill it out every Sunday. I’ve been doing that now for about two and a half years, I guess. Whether you just got a couple of questions and you submit it. It’s part of their program. And they also periodically… I have to come back for other appointments. And they actually, of course, made a second appointment. So, I got the second shot in the Moderna combination. And they kept, each time I came back, they’d take blood. They wanted to see how the blood was forming antibodies, I guess. And so, I kept coming back. And they didn’t tell you what was happening until finally, I got an email that said the doctor was going to have a Zoom presentation or a web presentation. And basically, he came on and he gave the statistics that they had collected and said that the vaccine seemed to be working very well which was really nice to see. But we stayed in the… We would still stay with them because they wanted to see how long it lasted. And whether your antibodies would last. 

 So, I’ve been still going regularly. Eventually they gave us the third shot, the booster shot. And I haven’t had any word whether I’m supposed to have the next booster shot. I have an appointment with them in about two weeks to go. They call you back so they can check your blood. And presumably I might get another vaccine. So, it was a very interesting experience. And like Summer mentioned, I didn’t hardly ever see any people there except the staff. The place was clean. They were very, very friendly. It seemed to be well organized and run. And we felt happy. I felt happy to be part of the solution for COVID anyway. And that’s my experience. 

So, our thought to you all was if you get an opportunity to participate in a trial, take it. Especially for those of you with myelofibrosis, there’s a lot of medicines coming down the pipe. They may need some people to be in trials. If you meet the requirements, go ahead and take it. It’s a worthwhile experience. And you can maybe be helping medicine. That’s it for this week. I’m Jeff. 

Summer:

I’m Summer. I’m Zelda. 

Jeff:

See you next time. 

Summer:

Bye. 

Importance of Music for an MPN Patient and Care Partner

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Importance of Music for MPN Patient and Care Partner from Patient Empowerment Network on Vimeo.

 MPN Empowerment Leads Jeff and Summer discuss the role music has played in both of their lives and how it has specifically helped amid Summer’s myelofibrosis diagnosis. Watch now to hear how music has influenced their lives.

Transcript

Jeff:

Hi, I’m Jeff.

Summer:

I’m Summer and this is Zelda.

Jeff:

And we’re your Patient Empowerment Network Leads for the myelofibrosis portion of the Patient Empowerment Network. Here to talk to you today about music. How music affects you when you have cancer. Is it good, bad, or what? And what do you think, Summer?

Summer:

I think it has a very positive effect because, for example, I just finished doing an hour of Zumba dancing and I love Zumba music, and I now have 5,00o steps on my Apple Watch. I think it can really raise your endorphins and be very good for the immune system.

Jeff:

Well, research proves Summer absolutely right. There’s been a lot of research into how music affects the body. Music is a tremendous de-stresser, it helps people relax, and all of those things affect your physical body. Summer has talked at length about how the mind and body connection works.

For me as a caregiver, it’s a little bit different. I’m a musician. I play the piano. I play in a band and I love to listen to music. It takes me to other places and it relaxes me. And it takes my away from, similarly, it takes me away from the stresses that caregiving can sometimes provide. Now we don’t have too many, but it does. So really that’s how we would feel about music. We have two different approaches to it. Music is definitely a positive in dealing with your myelofibrosis.

Until next time, I’m Jeff.

Summer:

Summer. I’m Zelda.

Jeff:

We’ll see you later.

Patient and Care Partner Discuss Value in MPN Care

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Patient and Care Partner Discuss Value in MPN Care from Patient Empowerment Network on Vimeo.

 MPN Empowerment Leads Jeff and Summer talk about how they define value in Summer’s care. For instance, one important thing that brings value to them is how accessible their healthcare team is. Watch now to hear more about what they value on Summer’s journey with myelofibrosis.

Transcript

Jeff:

Alright Summer, I’m just looking at the bill for your last doctor’s appointment.

Summer:

Wow.

Jeff:

Do you think we get good value for our money? Oh. Hi, I’m Jeff.

Summer:

HI, I’m Summer.

Jeff:

And we’re your Patient Empowerment Network Network Leads for myelofibrosis. And we’re here to talk to you today about how do you define value for your healthcare dollar. What do you think is important for healthcare dollars, Summer?

Summer:

Well, really important is that the doctor and all the medical staff really listen to the patient and really aware of how the patient is doing everything. Also, that they need to explain because my doctor will come up with little charts with funny little numbers on them and something about blasts which doesn’t have anything to do with blasting like having fun. So, she’ll come out with that and explain all that.

Also, to let you know what’s going on with your medication. Where I get my medication is Walgreens Specialty Pharmacy and they’re very good. They always call me about any changes. They let me know when the order’s in. They always offer to delivery it, but I don’t think that’s a very good idea so I do pick it up.

Also, that they see the patient as an individual and respect their individuality. For example, I’m big on mind-body connection. I think there’s a huge connection doing exercise daily, eating pretty good, but I do like my sweet treats too. I don’t give that up. And Zelda, she just likes to lay around, and that’s what she enjoys. Don’t you, baby?

Jeff:

Well, a couple of things that I think are important for your value for your healthcare dollar, one is accessibility. Is your doctor easily accessible? And with the UCSD system that we’re on, we have great accessibility. They have a wonderful patient portal on the web that you can go and find out all of your results. I don’t have to keep a book of past blood test results because it’s all on the web and I can see it. And if we want to get in touch with them, there’s a way to send them a message and  they get in touch with us within the day for sure. And we can make an appointment that way. It’s really, really a good system. So, accessibility is one thing that’s really important.

Another thing is availability of specialists. Myelofibrosis is a very, very rare and unusual disease and there aren’t a lot of specialists in the whole country. We’re truly blessed to have Dr. Tanaka who is a researcher and a specialist is myelofibrosis and myeloid diseases be on call when Summer showed up at the hospital with her first incidence that led to this diagnosis. And UCSD has a number of doctors that are specialists, so we are fortunate. But you need to find a healthcare system where you have enough specialists.

And the final thing that I can think of is, you need to be your own advocate. The doctor is doing the best they can, he or she can, to solve your problem and to work within what they think is normal standard, normal practice, but they’re not mind readers. They can’t understand what is concerning you. You need to speak up, ask questions, and let the doctor know your concerns so they can address them. That’s the patient’s job as opposed to the healthcare system or the doctor’s job. Speak up.

So those are some of the ways we define value in our healthcare ‘Til next time, I’m Jeff.

Summer:

Summer. Zelda.

MPN Patient and Care Partner Breakdown Terminology

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MPN Patient and Care Partner Breakdown Terminology from Patient Empowerment Network on Vimeo.

MPN Empowerment Leads Jeff and Summer share how overwhelming medical terminology can be. Jeff encourages everyone to ask your healthcare team questions whenever you need to. He shares that asking the right questions is part of becoming an empowered patient.

Other Videos Featuring Jeff and Summer:

Roles Reversed: Taking Care of Your Care Partner

 Patient and Care Partner Address the Mental Aspects of an MPN

 How Can Care Partners Combat Burnout

Transcript:

Jeff:

Hi, I’m Jeff.

Summer:

I’m Summer and this little darlin’ is Zelda.

Jeff:

And we’re your MPN Network Managers (Editor’s Note: Network Managers are now referred to as Empowerment Leads) for the Patient Empowerment Network. Here to talk to you today about medical terminology, which often is very confusing. Isn’t it, Summer?

Summer:

Yes, I would say very confusing. And Dr. Tanaka told me oh, you need to take a bone marrow test to determine what kind of myelo, I’m writing this down, myeloproliferative neoplasm. Anyway, Jeff can explain all that to you. To determine all that and I thought, oh my god this is so confusing. She said – she kind of set me straight and made me realize that this is really important.

Jeff:

And, so, we didn’t know, neither of us, what these things meant originally. Dr. Tanaka explained some of it to us pretty well, but then I went home and I’m interested in this, so I became, I’m Summer’s caregiver. And I started doing research, and that’s what I’m going to give you some pointers that I found.

First of all, specific words you can probably Google and find on the web and they’ll tell you want it means. There are a number of organizations that specialize, in our case myeloproliferative neoplasms and blood diseases. The LLS, Leukemia and Lymphoma Society is one of them, and the MPN Research Foundation is another. And there is plenty of information here on Patient Empowerment Network about these diseases.

So, you need to find out the answers to the questions that you have. And you will probably do some of this on your own because you’ll have, when you have your appointments with your doctor you need to ask the questions. There’s no question that should not be asked, and your doctor will be able to tell you. If  you are blessed with a good care team, they’re going to have the ability to explain to you what’s going on with your disease in simple terms and terms that mean something to you. And we are truly blessed to have Dr. Tanaka who is able to do this wonderfully.

So, ask those questions, do your own research, you need to become an empowered patient. That’s what we had to be here at Patient Empowerment Network. So the more you know about this unusual disease, in our case – in Summer’s case, myelofibrosis, or other myeloproliferative neoplasms, which by the way that means cancers of the blood produced by the bone marrow, and we found that out. So, you need to become an expert on this kind of stuff yourself because you need to become an empowered patient. That’s our advice to you.

Until next time, I’m Jeff.

Summer:

Summer and I have another bit of advice. Being married or involved with someone who, like Jeff, had all this interest, if you’re not into medical things, helps a lot because I never really think about it very much. I depend on Jeff who does a great job.

Jeff:

Thank you very much, dear.

It’s part of our concept that we’ve told you about before. You’re really apart of a team. You have the caregiver, the patient, and your healthcare provider. So, become a strong team and you’ll be an empowered team.

Until next time, I’m Jeff.

Summer:

I’m Summer and this is Zelda.

What Healthcare Trends Are Observed in MPNs?

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What Healthcare Trends Are Observed in MPNs? from Patient Empowerment Network on Vimeo.

MPN Empowerment Leads Jeff and Summer share trends they’ve observed since Summer’s initial diagnosis of myelofibrosis a few years ago. They share recent studies they’ve viewed and are following. Jeff gives a charge to viewers to be your own empowered patient and keep up with research when you can. “Be your own advocate.”

Videos Featuring Jeff and Summer:

Roles Reversed: Taking Care of Your Care Partner

 Patient and Care Partner Address the Mental Aspects of an MPN

 How Can Care Partners Combat Burnout

Transcript:

Jeff:

Hi, I’m Jeff.

Summer:

And I’m Summer.

Jeff:

And we’re your Network Managers (Editor’s Note: Now referred to as Empowerment Leads) for Myeloproliferative Neoplasms for the Patient Empowerment Network. And, we’re here today to talk to you about healthcare trends in MPN medicine, basically.

Summer:

I was diagnosed with myelofibrosis over three years ago. And at the time, they could only offer me one medication, Jakafi (ruxolitinib), which for me work but doesn’t work for everybody. So, I’ve had good luck with it and I haven’t really had any other symptoms.

Jeff:

But this is an exciting time in the MPN medicine because since that time, there have been two more medications released to control myelofibrosis. One called fedratinib. And just last month, pacritinib was released and approved by the FDA. So now there are three medications that can be used to treat the symptoms of myelofibrosis.

There are currently no medications that can cure a person of myelofibrosis. The only cure, currently, is a stem-cell transplant. But some exciting developments are happening that may even be able to cure it.

I just read an article that some scientists have found that the medication used in breast care – breast cancer treatment causes remission in bone marrow fibrosis in mice. So they’re working along the way to see if that will be effective in humans, eventually. And that might be, potentially, a cure for myelofibrosis. Those are exciting trends in the MPN research and medicine world.

Summer has other information that’s useful though.

Summer:

Yeah, that’s really exciting about the new medication. I was looking up what the Mayo Clinical has to say and being happy and having a good attitude really enhances the immune system. There is a chemical that you get that comes from being happy that really, really keeps the disease from being more serious.

So anyway, that’s what I believe in because I’m an actor and so I don’t get into the medical thing, but I know Jeff is brilliant for it. So, that’s exciting all along having a good attitude and the new developments in medication.

Jeff:

So, keep those in mind, consult with your healthcare provider, and you need to be your own empowered patient and keep up with the research by yourself. It’s all available online, no problems at all, just Google it and you’ll be able to keep up yourself. You have to be your own advocate.

Until next time, I’m Jeff.

Summer:

I’m Summer and, wait a minute, this is our little baby, Zelda.

Roles Reversed: Taking Care of Your Care Partner

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Roles Reversed: Taking Care of Your Care Partner from Patient Empowerment Network on Vimeo.

MPN Empowerment Leads Summer and Jeff are experiencing a bit of a change. Jeff is Summer’s care partner, however the roles have been reversed. Jeff recently had a knee replacement and is unable to do many tasks he was before. Summer has jumped in taking care of Jeff, but admits it’s harder than it looks. Watch and hear Summer’s comedic take on switching roles and stepping into the care partner role.  

Want to connect with Jeff and Summer? Email them at question@powerfulpatients.org or text EMPOWER to (833) 213-6657. 

Transcript:

Jeff:

Summer! Bring me a snack.

Summer:

Yes, I’m bringing you a chocolate bonbon.

Jeff:

I don’t want a Ghirardelli, I want a Walker’s shortbread.

Summer:

Ugh, yes sir.

Being a caregiver is not a day in the park.

Jeff:

Hi, I’m Jeff.

Summer:

I’m Summer, hi.

Jeff:

We’re your MPN Network Managers for the Patient Empowerment Network. We’re here today to continue talking about caregiving. In the last video, we talked about me being Summer’s caregiver and or different roles and what I bring to that and so on. We had a chance in the last month to actually turn the tables.

In mid-December I had a knee replacement and since then, Summer has been acting as my caregiver. Tell us how it’s been, Summer.

Summer:

Ugh, it’s been exhausting. I’m driving, I’m doing dishes, I’m emptying the garbage, I’m cooking all the meals, I’m getting everything exactly the way you want. You’re lot more of a perfectionist than I am…

Jeff:

Yup, I should be able to drive in another week or so and Summer hates driving, so I really appreciated that. And pretty soon I’ll get back to my role of doing the driving anyway. She’s done a wonderful job, really been very helpful and I’ve been extremely appreciative of it. What’s been the hardest thing for you, Summer?

Summer:

Thinking about all the little things you take for granted that you couldn’t do, like mailing your letters and emptying your garbage. That’s everything, you really have to be on the ball and think of what the needs of the other person really are.

Jeff:

Very true. We stressed that in the last video. Needs of the patient. We have a real supportive relationship in our normal marriage in general, so for us it’s not difficult, but some people may have a difficult time adjusting to being a caregiver or even being a patient.

Summer:

Right.

Jeff:

One thing you have to remember, give the caregiver time for themselves. I think I did a pretty good job trying to give you time for yourself.

Summer:

Yeah, I did my aerobics, I visited friends, I rehearsed for the play, I did my stand-up comedy, yeah, I did.

Jeff:

So, it’s worked well for us. So, as you enter into this relationship of patient and caregiver, be aware of each person’s needs. And, you should have a good experience with it.

Summer:

Darling, I have an urge for a chocolate cookie. Could you bring me one? I gotta take a nap.

Jeff:

Certainly. I’ll get it after we say goodbye to the people. Goodbye, ’til next time.

Summer:

Bye, ’til next time.

Patient and Care Partner Address the Mental Aspects of an MPN

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Patient and Care Partner Address the Mental Aspects of an MPN from Patient Empowerment Network on Vimeo.

MPN patient Summer emphasizes how important it is to have goals. One of her personal goals is to walk 10,000 steps each day! As a care partner, Jeff shares his main goal is to do whatever he can to help Summer achieve her goals. Some of their shared goals are to live life to the fullest, always live in the moment and don’t let the disease you have control your life.  

Want to connect with Jeff and Summer? Email them at question@powerfulpatients.org or text EMPOWER to (833)213-6657. 

Transcript:

Jeff:

Hi, I’m Jeff.

Summer:

Hi, I’m Summer. And hi, I’m Zelda.

Jeff:

And we’re your MPN Network Managers for the Patient Empowerment Network. Here to talk to you today about emotional and metal aspects of dealing with a severe or very serious disease. Summer has some real strong thoughts about that, so I’m going to let her tell you about it.

Summer:

Well, I think it’s really important to always have goals. And one of my first goals, this is my Apple Watch right here to keep track of my steps so I can get 10,000 steps a day. That’s really important. Of course, I’m still teaching my classes. That’s very inspiring. We’re putting on a show pretty soon. And my goal right now too is I’m getting ready for my next comedy show. I’m going to talk about the cloud and about those little people that are in the traffic signs that tell you when to stop or go. And of course I’ve got Zelda and I don’t know what her goal is, just to be a good dog. So, that’s what my goals are. To stay positive.

Jeff:

And Summer has those goals, but one serious and important thing that we decided when she got this disease was we were going to live every life, every moment of our lives to the fullest, in the moment. And that took some adjusting because I’m a real planner. We pay attention to enjoying everything that we do, each day that we do it. And, we decided early on not to change our lifestyle, not to let the disease control us, and just to keep going. And, that alone plus Summer’s fantastic exercise regimen has really done a lot to keep her in good shape and to keep her strong.

As a caregiver, my goals are do whatever I can to help her achieve her goals. So, it’s really important to live life in the moment and keep a positive attitude. Don’t let the disease control you. That’s our advice.

‘Til next time, I’m Jeff.

Summer:

I’m Summer and I’m Zelda.

How Can Care Partners Combat Burnout?

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How Can Care Partners Combat Burnout? from Patient Empowerment Network on Vimeo.

Care partners Diahanna, Sherea, and Patricia discuss how they have learned to overcome burnout. Often times when caring for a loved one, we don’t even realize the burnout until after the fact. As care partners, you have to know when to step away and take time for yourself, so you can effectively care for and support your loved one. 

Transcript

Diahanna:

Hello, we’re going to talk about care partner burnout. So the question I would like to pose is, how would you describe caregiver burnout? And how do you feel it coming on? And how can you counteract it? And Patricia or Sherea, either one of you can answer those questions, it would be great to hear from you.

Patricia:

Let me just start with, I have been a caregiver. Although I am right now experiencing multiple myeloma, my father had multiple myeloma and passed in 1990 and I was his caregiver. At that time, a very young person. So, he actually had to have part of his breast bone removed and they left the wound open, and it had to be pack everyday, twice a day with gauze and an iodine thing. And so, my mom could just not do it and my though was, well she can’t, I have to. So every morning before work, I would go and take care of him in that way. Every evening when I came home from work, before he went to bed, I would go over and do the same thing. And that went on for several months. Because I was young and because I really did not have any understanding of what as going on with my father. I mean multiple myeloma, what is that? Not like today. Today there is information. You know you go online, you can find the information. It worked out anyway that I was able to take care of him. I didn’t know that I even had a burnout cause I just continued to do what I was doing. I worked everyday, I had three kids, you jut do what you have to do and I think that’s what most caregivers get to a point of saying to themselves, “I’ll do what I have to do”. And whether they know they have burnout or not, they just do it.

Diahanna:

You know, I think that is very interesting, Patricia, because I think women have a tendency to do that more so than man because we are already maternal. We’re caregivers.

Patricia:

Yeah.

Diahanna:

And we, if someone else drops the ball, and you know we are used to being on call 24 hours a day, 7 days a week, vacation or not. And so, we do always step in and tack up the slack and put ourselves on the back burner. A lot of the time we don’t realize we’re burnout until after the fact.

Patricia:

Way after.

Diahanna:

And we have no more energy. We have nothing else to give ourselves. So Sherea, how would you describe it? How would you look at this?

Sherea:

I would describe…I was a caregiver for my father, now I’m doing some caregiving for my mother who is having some memory issues. And what I can tell you about the feeling is, the feeling of being overwhelmed, the feeling of pressure, and what I notice with is that I have a short fuse. When I’m feeling burnout, things that normally would just not be a problem become an issue. And so, what I try to do is recognize that I’m having a moment and that I’m going to need to step away for a little bit and get recentered. And I do understand that yes, as women, we just do what we have to do, but there does come a point where you have just had it. You’re at the end of the rope. And I’m starting to recognize that more. So it is a feeling of pressure and just being overwhelmed. And the moment I start feeling it, it used to be I kind of just keep pushing, but now the moment I start feeling it, ok let’s work on that now so it doesn’t become an issue later.

Diahanna:

Mhmm. I can appreciate that. When I was taking care of my husband, I probably put myself in a position where I was taking care of him at times when he didn’t need to be taken care of. It was that thing as I felt I could do better or more for him that he probably didn’t know about or I thought he didn’t know about. And I was mistaken on that. It got to the point where I wasn’t sleeping, there was a lot of anxiety, a lot of stress, I wasn’t eating well, and I was getting colds all the time, which I normally wouldn’t get. So my immune system, everything, was messed up as a result of what I was doing. And I remember coming home from work thinking I can’t do this anymore. If I’m going to be a partner to him, I have to step aside. And I called because I was going to every appointment, I was looking at everything, I was doing all the research because he thought he didn’t have to research as long as he felt good, everything was ok. He said, “I’m going to let you be the person that worries because I know you worry enough for the both of us.” And I did. I worried enough for everybody in the household and it was taking me down a path of being mentally, physically, emotionally stressed. And I had to step away and say, “Honey, I don’t need to go to all your appointments. I don’t need to continue to do this.” And that’s how I realized that I was doing way too much and that I was going to be doing a disservice to him – to everybody in my household.

How an MPN Care Partner Handles Burnout

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How an MPN Care Partner Handles Burnout from Patient Empowerment Network on Vimeo.

MPN Empowerment Leads Summer and Jeff discuss care partner burnout. Jeff is the caregiver of Summer who is living with myelofibrosis. Jeff admits to doing majority of the research so he can properly advocate for Summer’s care. In this video, Jeff talks about various outlets he uses to counteract burnout such as photography, music and improv theater.

Want to connect with Jeff and Summer? Email them at question@powerfulpatient.org or text EMPOWER to (833)213-6657.

 

Transcript

Summer:

Wake up. I’ve finished making your bonbons, Jeff. You said you wanted these.

Jeff:

Thank you, Summer. Mmm.

Summer:

Is it delicious?

Jeff:

It’s delicious. Just what I needed.

Summer:

Well, I’m glad I could please you.

Jeff:

Well, I’m Jeff.

Summer:

I’m Summer.

Jeff:

And we’re your MPN Network Managers for the Patient Empowerment Network. We’re here to talk to you today about…

Summer:

What caregivers do, and sometimes caregivers might get burned out. So, we’re talking about what you can do periodically to not get burned out, to keep going, and being great like you are. What are some of the main things you do, Jeff?

Jeff:

Well, I…one of the main things I do is try to remove myself from worrying about myelofibrosis and Summer’s disease. And I go out into nature and I take a lot of nature pictures. I go to National Parks, and take pictures of scenery, beautiful scenery, and big mammals and stuff, which I really really enjoy doing. It sort of clears my head and really refreshes me. I recently took a trip, as a matter of fact, to Yosemite. That’s one of the things I do.

Summer:

And another thing has to do with music.

Jeff:

Yes, I love music and I play in a band. I play the keyboard and the guitar, and I do that once a week at my church and I really really…again it requires quite a bit of focus and it puts my mind in a completely different place. So I remove myself from the worries, is one of the things I do. I’m very fortunate because Summer is doing quite well and doesn’t need huge amounts of physical care.

Summer:

Right, but you do all of the medical stuff because I can’t stand to hear about medical stuff, it’s boring.

Jeff:

That’s right. I do do a lot of the research and keep up with what’s going on in the myelofibrosis area and that’s kind of what my portion of the caregiving is. We’ve talked before about working with, dealing with these disease requires a team approach: the patient, the caregiver, and the medical team.

Summer:

Right.

Jeff:

It’s very important.

Summer:

And we also do improv. That really helps.

Jeff:

That’s correct. We’ve mentioned before that we run a small theater, and one of the things we do in the theater is improvisational theater. We make things up, now you’ve got to be in the moment, so your head can’t be disclouded and worrying about other things. It takes your mind off of the disease, and in my case, worrying about Summer’s disease and the caregiving responsibilities. So that helps us. It actually helps both of us a lot.

Summer:

Right. So do you want any more bonbons or is that a no?

Jeff:

I’ll just take another bite. You know, if we keep going like this, you could become the caregiver and I’ll be the patient. So until next time, I’m Jeff.

Summer:

I’m Summer.

Jeff:

Bye!

Summer:

Bye!

MPN Hero: Jeff Bushnell

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The Patient Empowerment Network (PEN) is proud to congratulate and honor our dedicated and passionate Network Manager Jeff Bushnell, who is being recognized as an outstanding patient advocate. Jeff’s passion and enthusiasm for helping patients and caregivers navigate their cancer journeys exemplifies PEN’s mission of fortifying cancer patients and care partners with the knowledge and tools to boost their confidence, put them in control of their healthcare journey, and assist them in receiving the best, most personalized care available to ensure they have the best possible outcomes. We are proud of our growing team of Network Managers and grateful for their engagement in the PEN community.

 Jeff Bushnell, recognized for his advocacy through the PEN Network Manager program, has been named a Voices of MPN 2021 MPN Hero. The MPN Hero award is given to those who have demonstrated a strong commitment to making a difference in the lives of people with myeloproliferative neoplasms (MPNs). Jeff, whose wife Summer is living with myelofibrosis (MF), has accompanied and supported Summer on her MPN journey and has helped thousands of patients through the Network Manager Program. Jeff and Summer  serve as a duo of Network Managers who reach out to patients in the MPN community through e-newsletters, program development, and support groups. Jeff makes connections to others through advocacy and humor presented via videos.

“My goal is to help the caregiver and the patient understand that the caregiver’s a significant portion of the team. We thought we’d try to tell our story to anybody who was listening. We make videos every month about different things. We try to make them informative and humorous and little stories, telling about the challenges that myelofibrosis presents. I’m trying to get the word across that it’s important to support these folks that have myelofibrosis. You have to listen to your patient. What does that person need? Some need significant physical help. Others just need reassurance, emotional reassurance. But at the same time the patient needs to ensure that the caregiver is taken care of and has their time. Summer gives me the time to pursue my photography interests. She understands that I’m recharged when I go to these natural places. I never thought of what I was doing as anything other than what needed to be done. Because I think if you’re involved with somebody you care about that you should do the best you can to support them.” – Quoted from  Jeff’s Voices of MPN Hero Award. See full video here:

 The PEN Network Manager program is a volunteer group of patient empowerment ambassadors from around the U.S. Designed to further enhance health literacy, the program was launched in March 2020 and has grown exponentially. The volunteers engage with PEN’s network of cancer patients and families with the goal of providing support and navigation on their path to empowerment. Learn how you can get involved here.

 

How an MPN Patient Resumes Exercise After Time-off

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How an MPN Patient Resumes Exercise After Time-off from Patient Empowerment Network on Vimeo.

MPN Network Managers Summer and Jeff talk about Summer’s journey to resuming exercise after a shingles diagnosis.

Summer believes exercise is important and strongly helps with her myelofibrosis. She currently does a daily Zumba session and is working her way back up to 10,000 daily steps.

We would encourage you to continue and be as active as your disease allows you to be.

Want to connect with Jeff and Summer? Email them at question@powerfulpatient.org or text EMPOWER to (833)213-6657.

Transcript:

Jeff:

Hi, I’m Jeff.

Summer:

Hi, I’m Summer.

Jeff:

And we’re your MPN Network Managers for the Patient Empowerment Network, here to talk to you about…

Summer:

Resuming activity after you’ve been laid up and haven’t been active for a while.

Jeff:

How many steps did you get, Summer?

Summer:

8,000. Only 2,000 more to go, so yay!

Jeff:

That’ll be great. Summer’s always been really an exercise addict. She really, truly, she’s tries to get 10,000 steps a day. She does Zoomba for an hour and she really tries to get a lot of exercise. She believes that’s really helped her with her myelofibrosis, but then something happened.

Summer:

Yeah, about the middle of June I got shingles even though I had the vaccine and shingles really made me exhausted. Really affects the nerves, it was horrible. So, I got really out of shape. I was just doing exercises laying down, mainly. So now that I am recovered, I’m trying to get back in shape.

Jeff:

And how are you doing that?

Summer:

Well I started out trying to do 30 minutes of Zoomba on my exercise tape, and that was only a couple of days ago, so I’ve gotten up to 50 minutes today. And I’m trying to get a total of 10,000 steps. When I get that goal, I’ll be back where I was before.

Jeff:

And how do…what are you working your way up to it, dear? What’s happening?

Summer:

Yeah, so many steps a day and today I got 8,000. But part of it, this helps your exercise a lot. I hadn’t been clothes shopping in those two months, so we went shopping today and I bought something to wear to a birthday party. So, that kind of renewed me and gave me energy to walk through the mall.

Jeff:

So how many steps did you get in the mall, do you think?

Summer:

I don’t know. I have now, like I said, I have 8,000 total, so I don’t know maybe I got 2 or 3 thousand in the mall.

Jeff:

So, we would encourage you to continue and be as active as your disease allows you to be. It’s sometimes a struggle. You may only be able to walk just around the block, but it’s really important and Summer knows how important it is. And, it’s been a real struggle getting back to where you were. Is that correct?

Summer:

You’re correct. That was the worst thing in my life.

Jeff:

So, that’s our advice to you for this short bit of advice is stay active to the very best of your ability.

Summer:

Right. Well, we better get back to walking.

Jeff:

We have 2,000 more steps to go. Yep. Well that’s our advice for today. Till next time, I’m Jeff.

Summer:

I’m Summer.

Jeff:

Bye.

Summer:

Bye.

How Stress Can Play a Role at the Time of a Cancer Diagnosis

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How Stress Can Play a Role at the Time of a Cancer Diagnosis from Patient Empowerment Network on Vimeo.

MPN Network Managers Jeff and Summer share how they’ve overcome and continue to overcome the stresses that follow a cancer diagnosis. 

Although, surprised at the time of her diagnosis Summer remained positive. As a care partner at the time of diagnosis, Jeff was fearful because he knew very little about myelofibrosis. To counteract this stress, he armored hisself with knowledge from various resources. Both Jeff and Summer use their hobbies as an outlet whether it’s nature photography or teaching improv classes to further relieve stress. 

Want to connect with Jeff and Summer? Email them at question@powerfulpatient.org or text EMPOWER to (833)213-6657. 

A Guide to Caring for Each Other: An MPN Patient and Care Partner

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A Guide to Caring for Each Other: An MPN Patient and Care Partner from Patient Empowerment Network on Vimeo.

MPN Network Managers Jeff and Summer dive into how they care for one another. Although, Jeff is the sole care partner for Summer who is living with myelofibrosis admits to still having to care for him as well. Hear how our MPN Network Managers prioritize care for one another.

“Listen to each other really strongly and help give each other what you need.” — Jeff