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

Bookmark (0)

No account yet? Register

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. 

Myeloma and NHL Patients Discuss Their Go-to Sources of Laughter

Bookmark (0)

No account yet? Register

Myeloma and NHL Patients Discuss Their Go-to Sources of Laughter from Patient Empowerment Network on Vimeo.

Lisa, Thomas, Donna and Diana all share what keeps them laughing. From TED Talks to TikTok videos—Thomas shares it’s always best to start your day with something positive.  

See More from PEN-Powered Activity Guide 12

Transcript:

Lisa Hatfield:

I wrote down two sources of laughter right now, and just so people are watching this, something that they can look up, or a positivity or something that there’s just like having a low day go onto this activity guide or watch this thing, two sources of positivity or laughter or humor from any one of you want to start with, Diana? 

Diana:

Number one would be my book, no I’m kidding. You know what I have found? Every morning I have since retired. And every morning since I’ve retired, I get on Facebook and TikTok and I look at Penny the talking cat. I love Penny the talking cat videos, it’s just stupid, stupid humor. I also adopted a new kitten and he brings me joy, such joy on the silly stuff that he does, so I think whatever you can find that brings you humor, do it every day. And start your day with it.

Lisa Hatfield:

That’s a good tip. Start your day with it. Yeah, getting off on the right foot. Donna, how about you? 

Donna:

Well, I mentioned it a little bit earlier, one of the comedians that I really love, because he always talks about family issues, Italian Jewish issues all the time, back and forth, back and forth. That’s Sebastian Maniscalo. 

He is so funny, and I watched those videos either on Facebook on TikTok, on YouTube, whatever, and he relates to everything that you could think of, whether it’s growing up in situations that are awkward, whether it’s awkwardness at holidays, whether it’s the awkwardness to going out with his children or his wife or whatever, so it’s all family-related. And it just makes me laugh. It puts me in a different place and I laugh and I find it very relaxing, and I just say, wow, I can relate to that or whatever. But he makes me laugh all the time cause it’s his voice that says mannerism, and the subject matter is always great, and it’s never raunchy actually. Never. 

Lisa Hatfield:

That’s nice. Yeah.

Diana:

This January, I broke my foot. I had a stress factor, my foot, so I had to sit on the couch for six weeks, I couldn’t go to the gym, I couldn’t walk 12000 steps a day, which is what I typically do. I watched all 178 episodes of Seinfeld over those six weeks and it’s what kept me going.

Lisa Hatfield:

Awesome. So, Thomas, what are two sources or Donna were you done? Thomas, a couple of sources of inspiration or humor for you? 

Thomas:

We all have this in common is we all go to TikTok in the morning and just look at something to get our day going. So that’s one of the things that I do. And then the other thing is, I give calls, sometimes I call them or via text to some… My guys that I ride my bike with, one of the guys are so animated with every story that he tells, he makes you laugh even when you don’t even want to laugh because of how he animates the story. So, between him and what I see on TikTok and social media, that really brightens my day up in the morning before I start it. And it has to be something positive, anything negative, I try to scroll past that even so fast that it doesn’t even get into my brain. 

Lisa Hatfield:

That’s awesome. Yeah, avoid the negative. I like to look up every once in a while, when I’m feeling just… I need a good laugh. I look up YouTube videos of babies laughing, for some reason, you see it, there was a video with Dad Laughing, the baby with her sneezing and the baby would have this huge belly laugh that just got me laughing pretty good, and I also like… There’s a podcast just for positivity that I have listened to, the guy’s name is Shawn. I think it’s pronounced Achor, it’s like anchor without the n, but he talked about… He studied happiness, I think he taught at Harvard for a little while, and he does these experiments and I think would be really funny to watch, but when he goes in and talks to groups he tells everybody to pair up two different… Everybody’s in a pair, and then he’s okay, somebody’s number one, and the pair, somebody’s number two, it doesn’t matter who’s which number right now, and then he proceeds to tell people for the next seven seconds, I want you to control your behavior, so I’m going to tell you to do something for seven seconds, you can’t partner with somebody you’re married, you can’t be paired up with somebody that you know really well, so what he does is he says okay, all the number ones… 

I want you to go neutral, go blank. No emotion, nothing. Number two, for seven seconds, I want you to stare deeply and warmly into the eyes of number one, now mind you, these might be complete strangers and both of them are supposed to not… They’re supposed to totally control their behavior, so for seven seconds they do that to stop, and then he reverses it, so number two is now number one, and vice versa is supposed to show no emotion and not smile, not laugh, and he said, Success is by controlling your behavior failure is you did something, usually laughing or smiling when somebody’s gazing deeply in your eyes and you’re supposed to be totally neutral. He does these experiments… He said 85% to 90% of people fail because they cannot control their emotions, they can’t help, but they’ll laugh or they’ll giggle or whatever, and he said it’s universal. It really predicts nothing, but it’s universal, it happens every time, but he talks a lot about the mirror neurons that we have, you know, if somebody’s yawning, we feel like we have to, Jon, but smiling and laughter is sort of contagious because of these mirror neurons. 

So, if one person starts laughing at the partner, the other one does too, and it’s just kind of one of his funny experiments, so that would be… I guess my take away is this podcast by… Or a couple of podcasts by Sean Achor. They’re funny to listen to. He describes him, he’s just super funny to hear talking anyway, he had some TED talks out there. So those are my two go-tos. 

How Have You Maintained Positivity in Uncomfortable Situations?

Bookmark (0)

No account yet? Register

How Have You Maintained Positivity in Uncomfortable Situations? from Patient Empowerment Network on Vimeo.

Despite feeling down or just not feeling well there are time when you have to show up for others whether it be family or friends. Lisa and Thomas, living with Myeloma along with Donna and Diana living with NHL share times when they’ve had to show up for others even when not feeling like their best selves.   

See More from PEN-Powered Activity Guide 12

Transcript:

Lisa Hatfield:

Have any of you ever felt the need to be positive even when you might feel like crap, just so others don’t feel awkward, just so other people don’t feel uncomfortable? So, we’ll go around we’ll start from… I’ll start from my left, Donna, Diana and then Thomas if you have any of those… Those instances, what do you do about that, Donna? 

Donna:

My situation was, I literally felt like crap, I was sleeping 10, 14 hours a day. My kids came home for Thanksgiving and I’m like, let’s just order from Whole Foods or from Jewel, we’ll get the complete meal, and they were like, No Mom, I really want to cook Thanksgiving will help you, we’ll do everything, and you can just supervise and… So, our meal was set up, we sat down at the table, my children made the stuffing… My son made the mashed potatoes and the stuffing, and my daughter made the gravy, we cooked the turkey, everything was cold… I mean literally cold, but we all sat there with a few friends, and I just wanted to just go in the bedroom and go to sleep. But I put up a good front. I was so happy we did it, they were so proud of themselves to make the meal for me that it brings tears to my eyes now, because they just wanted to have something normal, and for me, it was very difficult, but it was wonderful just to sit there and I kept putting my hand behind my back or maybe sit up straight because I was slumping and I was ready to fall asleep, but I’m telling you that situation for me, I still remember, and we talk about it every Thanksgiving, about what a wonderful meal it was even though it was the coldest Turkey and the coldest mashed potatoes I ever ate. The gravy was already curdling because it was so cold. It was just unbelievable. 

So, it’s a great experience. And it meant a lot to all of us really. 

Lisa Hatfield:

Well, now, it kind of did turn into a positive because you can talk about it with a smile and kind of laugh about it. Yeah. Sometimes we forge ahead. It turns into that sometimes it doesn’t, but thankfully, the cold mashed potatoes turned into a positive or something to laugh about later. Exactly. Yeah. Diana, do you have any thoughts on that? 

Diana:

Honestly, I don’t… I had the opposite situation that Donna did. I felt so bad leading up to my diagnosis, not knowing what was wrong with me, that once I started my treatment, I felt better on chemo. Who does that? I don’t know, but… So, when I took advantage of short-term disability, my immune system was compromised. This was well before covid, so I was in a great place once covid came because I knew exactly what to do and I had enough sanitizer to get through it, but going through treatment, I would always just put on my positive attitude before I left the house, and it just stayed with me and I surrounded myself with positive people, including the people who are treating me. 

Lisa Hatfield:

Yeah, good to hear that. Thomas, you ever feel like I have to put on a happy face even when you don’t feel like it? 

Thomas:

I do… As I mentioned earlier, maybe off-camera, we are always being watched and being a pillar in the community. I know that when I go to the clinic or when I go out in public, I’ll run into somebody that has seen me on an interview or know I have myeloma or maybe a patient that’s going through the exact same thing, and some of those days I am at my worst, I feel bad, but they will never know because they will always see the same happy go lucky Thomas that they see on video in the clinic or on the posts that I post on my social media. Always smiling. So, it’s something that I deal with all the time, but what I do is I do have an outlet. I have you guys… Because I always feel that I can talk to somebody that has been through some of the same things I’ve been through, they get an understanding of what I’m dealing with, instead of getting the generic… I understand answer. It’s something that happens more than a lot of people like to talk about, but it happens all the time. 

Lisa Hatfield:

Would you say sometimes you do go out into the community; I just have to ask… And this is kind of personal. Do you feel like that’s sort of a burden to put on a happy face, or do you just immediately go to your outlet of connecting with others and working out to let it not feel like a burden? 

Thomas:

I won’t look at it as a burden because I know that it’s inspiration to them. You know as long as I can inspire somebody else that’s dealing with their disease, or not even a disease, I hear it all the time, I’m in the gym, and people that’s not even diagnosed with cancer or any other disease, they look at me and say, Man, I know what you’ve been through, and I see you in here smiling and laughing and talking and working out, and I’m complaining that I had to get up and come in the gym this morning. So now that I’m in the gym and I see your exercising, you’ve really changed my day, but unbeknownst them that I’m on dexamethasone, I’m wide open… I have scar tissue from some of the areas, scar tissue pain from some of the areas I’ve had radiation. But no one will ever know that. 

Has Toxic Positivity Played a Role in Your Cancer Journey?

Bookmark (0)

No account yet? Register

Has Toxic Positivity Played a Role in Your Cancer Journey? from Patient Empowerment Network on Vimeo.

Toxic positivity is a buzzword that has been thrown around lately. Lisa, Thomas, Donna and Diana all share their thoughts on toxic positivity and how it plays a role in their lives now.  

See More from PEN-Powered Activity Guide 12

Transcript:

Lisa Hatfield:

So, talking about being positive and optimistic, and I don’t know if any of you heard of the phrase, it’s kind of a trendy buzzword or buzz phrase, toxic positivity, and I’ve only heard it once, and somebody had mentioned to me that I was too Pollyanna-ish with my diagnosis, and I think we’ve all mentioned it, it’s not… We can be positive, but it doesn’t mean we don’t have days that are a little bit darker or a little… We feel a little more down… It’s just that we tend to focus more on the positives when they’re there… Which they’re there a lot of the time, I mean, post there a lot of time. So, I actually had to look this up because I didn’t know the best definition of toxic positivity, and then I had… I brought up here, I want your thoughts on this. So this is from Psychology Today, I’m not sure if that’s a legitimate source, but they describe or Psychology Today explains toxic positivity as the act of avoiding, suppressing or rejecting negative emotions or experiences, this may take the form of denying your own emotions or someone else, denying your emotions insisting on positive thinking instead, so people say things, Well, look on the bright side, you get a lot of casseroles when you have cancer, which is true, and that’s great, but sometimes you’re not in the mood to hear that. 

Toxic positivity. What are your thoughts on that? To me, it almost sounds like maybe the positivity isn’t what’s toxic, it’s just people are in denial or avoidance of a situation, which is… I think I’m not a professional, but it seems pretty natural, especially when you’re first diagnosed, have you ever experienced toxic positivity or thought about it, or know anything about it, heard about it? Diana? 

Diana:

I mean like you, I had to look it up. When it was brought to my attention. And like you, I tend to take the positive route because that’s what’s best for me, but it’s okay not to be okay also, and I do acknowledge that in my book, there are some serious excerpts and there’s some serious quotes in the book, but I just… I think each person is different, and I appreciate it when people relate it to me in a positive manner, you know, I knew they were lying when they said, you look great bald, you have a great head. I’m like I really don’t, I really don’t but I still wonder to this day, I watch football and I’m looking at these guys with this long hair underneath their helmet, I’m like, why, if you’re a man, I would shave my head every day. But I’m totally going off subject here, but I just think it’s each individual person and how you respond to being positive, I think positivity begets positivity, you know humor begets humor. And kindness begets kindness. So, I don’t know, I’m a positive person. 

Lisa Hatfield:

And we know that about you. Yeah, that’s awesome. And I think we feed off of that too, I know when we were all together in our meetings working on projects your positivity, cracking jokes and Thomas making us laugh for a variety of reasons every 10 minutes, it helped all of us feel better. I wasn’t in the best place when I arrived on that trip, having just gotten my bone marrow biopsy results, but when you were around people that feel good and act that way… You can’t help but feel like, Oh, this is awesome, this is great. It just changes your perspective and outlook. Donna, I think you were going to say something a minute ago. Do you remember? I thought you raised your hand. 

Donna:

I was going to say something. I think for me, because I tend to be a pretty serious person, but I do like humor. After being diagnosed and several other family situations that were happening simultaneously, I had to think positive and I couldn’t be around anybody that wasn’t positive. I felt like anybody that was not positive or trying to be light on the subject was just too overwhelming for me. And I think the outcome from this, like I explained to you guys for a while ago, that I used to be an A plus plus person, just completely like your typical A plus plus person. And it’s changed me. And now when I speak to people or I speak to groups, whatever, and even in my own life, positivity, really a positive outlook really helps, and I think that’s one of the things that we should all stress, if any of us speak to any cancer survivors or anybody going through it is you have to find a place where you can just kind of think about something positive because you never know, and there’s always hope, and there’s great treatments out there, so if it’s all possible, think positive, that’s really how I feel. 

And it taught me a great lesson to be honest with you. 

Lisa Hatfield:

Great comments. Yeah. 

Thomas:

Yeah, being the most tenured on the panel, I’ve had numerous… I’ve had three stem cell transplants, I’ve also relapsed numerous times afterwards, and toxic positivity is something that again, acceptance is a reason that I could answer, or I can speak on how I relate toxic positivity to myself. Some of the phrases that I use are, it’s just another test to add to my testimony, that’s the positive part about it, that I have a testimony and that I’ve relapsed, but this test is something that’s going to… I need this test to get back to add to my testimony to get to where I need to be right now.

So that’s what I took away from the toxic positivity aspect of the conversation, and then as I was speaking to one of my friends yesterday, he enlightened me in conversation, we’re talking, and then he gave a toxic positivity speech, unbeknownst that I was already talking about. I was thinking about some things that he said that his father-in-law passed away, and he said that he’s in a better place, and that’s the toxic positivity that he used to explain to his wife because his wife was struggling with it, and he had to tell her that, hey, although he’s gone, he’s in a better place. 

So, we all use toxic positivity, and we don’t even know that we’re using it, but being that I’ve relapsed so many times, I utilize toxic positivity for myself because mentally, I need that drive to say, Okay, I relapsed again. I don’t want us to come to a dark place where I can’t believe I’m back into a position where… Why me, why me, why me, why me? And I just want to stay on the why not me side of the aspect, so that’s what I utilize toxic positivity for myself. 

Lisa Hatfield:

Those are great comments, and I think you’re right, I think what is called toxic positivity is sometimes just acknowledging what is not so great, but trying to make a positive out of it because we have to… It’s part of survival mechanism sometimes, and so… Yeah. 

Diana:

We have to keep from crying. 

Thomas:

Yeah, that’s why… That one that I always say, this is just another test to add to my testimony, that’s just something that keeps me on a higher level to not be an it down in the dumps about my disease that I’ve relapsed once again.  

Lisa Hatfield:

I love that comment too. It’s a great…

Diana:

I know I wrote it down. 

Lisa Hatfield:

That’s a great mantra. Maybe you can make one for me too, I’ll put up on my wall here… Yeah, I love that. And I do think, yeah, sometimes I think people have wondered if I’m in denial about what’s going on, I have my dark days, but it’s not denial, it’s just sometimes choosing not to focus on the negative news because we have to keep propelling ourselves forward, dealing with what we have… Yeah, we have cancer. Sometimes I don’t like when people say, oh, you’re a cancer patient, well I’m a person who has cancer, but I know it’s a common thing to say as a cancer patient, so… Yes, we’re cancer patients. 

Thomas:

But just say you’re a cancer survivor. 

Lisa Hatfield:

Cancer survivor. That’s true. Yeah, that was true. 

Lisa Hatfield:

Yeah, that is very true. So yeah, I think that that’s toxic positivity, it was something that somebody brought up to me before and said When I act kind of Pollyanna-ish, that that’s what that’s called… I had no idea what it was. I think I truly believe. I think sometimes people don’t know what to say. I think, Thomas, that you said that people just don’t know what to say when they know you have cancer, they don’t know what to say when they see you again and you look pretty good. Do I say she looks great? Do I say he looks good? Do I say, oh, I’m happy you’re doing well. They don’t really know, do you still have cancer, they don’t know if they can ask that question, so I think that… I’m not sure what I was going down a path with that, but I think people, whenever they say something, even if it sounds, may come across as, oh, you’re lucky you don’t have this or that, I think that’s another state of toxic positivity. It’s well-intended, I believe. I always believe people have the best intentions, they just don’t know what to say, so… 

And for myself, I might choose toxic positivity. I’m not sure if mine’s toxic or not, but I choose positivity too, so thanks for all of those comments and then Donna? Yeah. 

Donna:

I was just going to reiterate; I agree with you. I think it’s such an uncomfortable subject for patients and family and friends that they don’t know what to say, they try to say something positive. But sometimes it doesn’t come out. And for us, we have to be on a higher ground, we just have to be because we are dealing with something that’s emotional, physical, psychological, however you want to put it. And it’s a struggle some days. But the more we stay positive, the better we are, and like Thomas, Thomas has been through a lot, you’ve been through a lot, Diana and I’ve been through our own experiences, but we try to maintain positivity and… I really believe that it’s a very difficult subject, and there will always be a difficult subject for anybody to deal with whenever they’re diagnosed, so it’s difficult, but I think that we all try to figure out a better way to deal with it. And family is supportive, and so I try to get up every day and put my wig, my make-up on, and I had my uniform when I went out the door with a big smile, even if I was like dreading it. 

But you just have to do it. And so, I think it’s important for all of us to just maintain as much as we can maintain. 

Diana:

I was going to going to say, if you’re having one of those bad days, and like you said, most people are very well-meaning when they say something to you positive, again, just respond in a positive manner and then talk to somebody else who’s been there that you can vent about, like this group for me. I could vent with you… I worked for the Alzheimer’s Association for nearly 14 years. My mother died of younger onset Alzheimer’s, there’s nothing funny about that, there really isn’t… I felt like I could maybe joke about it because I’ve been there done that, but I didn’t want people coming up to me and saying, Oh, you work for the Alzheimer’s Association, I forgot that. You know that’s not funny, but you just try and respond because it’s an awkward situation, so just to respond to it in a positive manner and then you can… Vent to somebody who’s been there, done that. 

Finding Humor in Cancer’s Awkward Moments

Bookmark (0)

No account yet? Register

Finding Humor in Cancer’s Awkward Moments from Patient Empowerment Network on Vimeo.

Sometimes people just don’t know what to say when someone has been diagnosed with cancer and unexpected side effects may arise from various drugs.  Lisa, Thomas, Donna and Diana all share how they’ve navigated these awkward moments and even found the humor in it after a while.  

See More from PEN-Powered Activity Guide 12

Transcript:

Lisa Hatfield:

So, talking about humor too… And this is getting a little bit harder, maybe harder to talk about, but cancer, we all have had or have cancer, gone through cancer journey. Cancer is pretty awkward. And Thomas, I’ll start with you to find out if you’ve ever experienced this, so I did tell a lot of people when I was diagnosed with myeloma because I wanted… Especially my kids who were in middle school and high school, I wanted people to ask me questions, not my kids, they were scared out of their mind, and I was scared too, but I would just really… Matter of fact, a multiple myeloma, it’s a blood cancer and [inaudible]. I know that a lot of people went home because I would do that and went home, looked up multiple myeloma, what does that mean? And it does show the words incurable pop-up, and when I looked it up and when I was diagnosed, the median life expectancy, overall survival, it was four years. I think that’s changing, but it still shows up when you do a Google search, which I tend to do frequently, which means that 50% of the people don’t make it to the four-year mark, so the awkward part of cancer isn’t the cancer itself, or necessarily the mortality, but I notice… 

So, I told a lot of people, and since then, twice it’s happened to me where I’ve been out in public, and once at a grocery store and somebody sees me and it’s an acquaintance that knew that when I was diagnosed, I hadn’t seen them in a couple of years, and I see them and we’re looking at each other and they’re kind of looking like Lisa? And of course, I’m super excited to see someone, I’m like, oh my gosh, it’s so great to see you. Hugs, whatever, and they’re like, Oh, Lisa, you look great. But you know, I mean, we know that what’s going through their head and they’re thinking, I thought you might be dead, so… This is awkward. To me, I think that’s funny because it is so awkward, the cancer is not funny, the death issue is not funny, but a couple of times I’ve started laughing and said, I know what you’re thinking, but I don’t say it. But how do you deal with that? Cause it’s kind of funny. How do you deal with that? Cause part of humor is the awkwardness of a situation, how do you… Have you ever had that happen, Thomas where it’s like, I know what you’re thinking, and let’s talk about this, cause it’s kind of funny, but it’s… 

How do you work through that? And have you had that happen to you before. Any of you, but we’ll start with Thomas.

Thomas:

Well, well, first I’d like to say is that people don’t know what to say to people that’s diagnosed with cancer first of all. And yes, I have had that. People come to me mostly when I was first diagnosed, and someone asks, are you going to die? And I was like, I don’t know. We’re all going to die, but I don’t know if the myeloma is going to do it. But to fast forward now, I haven’t received those topics lately, I see people all the time because once I have my mask on, they only know me from the beard, so if I have on glasses and the mask, they’re like oh Thomas. So, I was like, who are you? So that’s the only reason that they know me, but I do… I understand exactly what you’re saying, but we have these conversations and they see me, like you guys see me. They seem me all upbeat and laughing, in the gym, #alwayssmiling. And then a lot of them forget that I have cancer, sometimes I forget that I have cancer, you know but I like to utilize that, those time frames when that happens, and people come at me and to forget. But to also think about, hey, I love how you’re doing, I love how you’re handling it, I love that you’re keeping a positive attitude, and I try to do that all the time. 

Lisa Hatfield:

That’s awesome. So do you ever have situations where you laugh about your cancer or is it even… Okay, to make fun of it. You know how some people do. They are… Well, and even Diana, in her book, she talks about some of the, I guess, by-products or side effects of having cancer, she makes fun of those. I think that’s funny and I actually… And a lot of people aren’t ready for that. And that’s okay, and if people aren’t ready to hear some of this, they have to honor that and take care of themselves, and it has to be at the right time to find levity in cancer diagnosis. But Thomas, do you ever laugh about any aspect of your cancer? 

Thomas:

I do, because you know I notice what we deal with every day, and I notice some of the negatives that comes with the cancer, I.e. Dexamethasone or any type of steroid, I don’t know what the lymphoma people take for their steroids. I just sit back and laugh at some of the things that happens, and I’ll be like, Okay, this is nothing but Dex, this is nothing but chemo brain, this is nothing but whatever else that goes on, and I find it humorous to not be mad at it, and I will say this. The reason I am the way I am about my diagnosis is because I’ve accepted my diagnosis, and you mentioned that a lot of people don’t want to talk about stuff that they’re dealing with, most of them haven’t accepted that they have the disease, once I accepted I had a disease, I was able to narrate how I handle it. Narrate what happens, and I can accept the stuff that you would deem horrible. I can look at it as humor. 

Lisa Hatfield:

That’s a great point. I think a lot of times, well, especially when a person’s first diagnosed, we’re dealing with a little bit of denial and shock. We’re kind of going through the grief process, you’re losing your life as you once knew it and then you get to point where you accept it and then you can kind of make fun of some of the ridiculous things that we have to go through, so… Diana, any comments about that? Making fun? We know that you do make fun of some of the side effects of cancer because of your book. 

Diana:

It’s true. Humor and laughter are my personal coping mechanisms, and I do believe that that can be the case for a lot of people. Sometimes before people buy my book, they’ll call me or reach out to me and they’ll say, well, this is the diagnosis of my friend, do you think this is appropriate for him or her, and I’ll be honest with them at that time, it might not be the right time for that book. I had a time at one of my book signings where a woman came up to me and kind of read me the riot act, and it’s like… It’s not everybody’s way of coping for things. You know, when I was first diagnosed, I did go into that black hole for about a week, felt sorry for myself laying on the couch, crying in the dark, and then I thought, this is not doing me any good, so that’s when I decided I was going to take a more positive approach and decided that I was going to be forward with humor. 

Lisa Hatfield:

That’s great. And again, you said the same thing that I think is some people are not at the point where finding humor in any part of cancer that’s not where they’re at right then, and definitely be aware of that and acknowledge that that’s okay. There may come a time when somebody is ready for that, and if that is an outlet for them or something that will help them get through with them… Perfect, and that’s great, and there are a lot of resources for that. Donna, how about you? Have you? 

Donna:

You know, it’s interesting, I was trying to think about where I found the humor in cancer, and most of my situations stemmed around my hair to be honest with you. It was very devastating. And odor hair, when you lose your hair, you get your eyelashes, your eyebrows, and feel like you have baby skin on your face, you know you’re a cancer patient, but the funny part for me was that I have straight hair, my siblings have straight hair, my mother has that curly kinky hair. And so, after chemo, your hair starts to grow back after a period of time, and mine came in like pubic hair. I mean it came in like pubic hair, it looks like a chia pet. I told everybody, I just could not believe I had curly hair for the first time in my life, and it was so funny. So, I had to figure out as being a retired physician here, I had to figure out what was happening, cause I’ve never had curly hair before in my life, and I always wanted to have curly hair and I’m calling my mom and I’m like, Mom, you’re not going to believe this. I probably here for the first time in my life, and it’s on my head and it’s not below my waist, and she’s like, oh my God, what’s going on? And I said, Well, the pore size shrinks down, and so it happens is when the pore size shrinks down and the hair is trying to go through the follicle, it’s like a cork screw, and so I had for probably less than six months, curly hair, but I did look like a chia pet, and what I told people, it kind of took the edge off and it was humorous and they were like, Oh yeah, that’s right, they were not so nervous to be around me because now when you decide when your hair grows back or takes it’s a long process to get to this point.

It’s a very long process. And so, most of my situations were around my hair growing back, my wig falling off, or someone hugging me, and my wig was lopsided, and so we made a joke out of it. We tried to make it as funny as possible in the most embarrassing situation as you can imagine, where someone gives you a hug, they really want to embrace you, and then all of a sudden they’re tugging on your wig and you’re lopsided, and so that’s where some of the humor came for me is that the uncomfortable situations with having no hair, growing it back or my beautiful, beautiful wig where people are saying, Oh my God, I didn’t know that after chemo your hair would come back so thick and I’m like, It’s a wig. It was really funny because one of the other survivors that I speak to on a regular basis, she says the same thing, everybody goes, oh my God, your hair is always so beautiful. It’s just beautiful. It’s never out of place. It’s beautiful. And she goes, my god, you guys never get it. It’s a wig, it’s a wig. That’s where a lot of my humor starts with the wig. 

Diana:

And I never wore a wig the whole time it was summer, it was hot, and I’d have chemo beanies, but I found that people were much nicer to me when I was bald, you know, they’d come up and perfect strangers would talk to you, and so I just took advantage of that.

I’m friendly. 

Lisa Hatfield:

Yeah, awesome. 

Donna:

I do have one other cute story like Diana, sometimes I didn’t wear a wig sometimes I wore the sheitel on my head, and so one of my neighbors’ little boys came over to visit and he knew I had cancer cause they tried to explain it to him. So, I opened up the door and he has his underwear on his head like my sheitel scarf type thing and I’m like Oh, that is so nice. Well, I wanted to wear something like, you’re wearing something. Mind you, it’s his underwear. It was the cutest thing. 

Lisa Hatfield:

That’s really cute. That’s awesome. Yeah, I think like what Thomas said for myeloma patients, we don’t typically lose our hair, except during stem cell transplant with one of the chemotherapy drugs used, but definitely the most groans or laughs that I hear is from the use of high dose steroids, the things people do… For me, I started talking like a sailor and was just very out of character, my kids would be, oh my gosh, if we had a swear jar, we could buy a car by the time we’re 10, but they actually older than that when I was diagnosed, but they would always joke, joke with it. It was just part of my sentence, every other word, I just would say something, so that was, I guess, part of my coping and part of my Dexamethasone, or at least that’s what I told my family. 

Diana:

Prednisone could be good though, in short doses, because I’m very productive, I got a lot of stuff done on Prednisone, didn’t sleep for five days, but I was like, woo. 

Lisa Hatfield:

That’s true. I did a lot of my best research, where am I going to go with this, or clinical trials out there, I’d be up late at night looking through my research, and friends of mine would ask me about different things to look up and… Well, if you give me a medical thing, I can just… With the best of it, I can look up on Dr. Google and give all kinds of information, but… Yeah, on Dex, on high-dose steroids. You can get a lot done. 

Diana:

I was just the opposite of you though, I was afraid to look anything up on the internet when my husband had heart failure the year before, I looked up everything, but when it came to me, I just didn’t want to know, I waited to hear from my doctor because my mind would have gone crazy, so I just binged watched Netflix instead. 

Thomas:

That’s just as bad. 

What Are Your Go-to Coping Mechanisms While Living With Cancer?

Bookmark (0)

No account yet? Register

What Are Your Go-to Coping Mechanisms While Living With Cancer? from Patient Empowerment Network on Vimeo.

Lisa and Thomas, living with Myeloma along with Donna and Diana, living with NHL share their unconventional ways they’ve found to cope with cancer. They share times when humor has helped them through dark moments and how exercise keeps them in high spirits.

See More from PEN-Powered Activity Guide 12

Transcript:

Lisa Hatfield:  

Hi, my name is Lisa Hatfield, I’m the myeloma Empowerment Lead for Patient Empowerment Network. We are going to have a program today., I’m super excited about with some panelists who are going to a little bit lighter program, going to talk about humor in cancer and maybe laughter, happiness and cancer. Quick disclaimer that this program is solely based off of our patient experiences, and it is not intended to be a substitute for your professional medical advice. Please talk with your medical team if you have any questions about your medical condition. So we’re going to start right off with our panelists introducing themselves, and we have actually two different types of cancer that are being represented today, we have protected blood cancer, multiple myeloma, and diffuse… I remember how to say it, diffused large B-cell lymphoma. I think it’s a type of non-Hodgkins lymphoma, is that correct? Okay, yes. So, I’m one of the Multiple Myeloma patients I’ve been… I’ve had multiple myeloma for four years now, doing relatively well, my bio markers in my blood are stable, I’m not really in remission because my bone marrow biopsy has come back positive, but doing well in general. Mentally, I’m doing great. 

Feel pretty good about things. And that’s why we’re here today. So, we’re going to just go around the room, the Zoom room, and I’ll just start from my left to right around. So, with Diane, you can just give your name, type of cancer, any treatment you’ve had, where you’re at now, and anything else you want to share about yourself? 

Diana:  

Sure, Diana Bosse, and I am one of those diffused large B cell lymphoma survivors. I was diagnosed in April of 2019, so I’m about getting close to four years out, which is promising. Doing great today. And just really happy to be here. I’m the author of a book called The Perks of Having Cancer, which I wrote during my treatment, so it was what kind of motivated me and kept me going.

Lisa Hatfield:  

Thanks, Diana and going around my room here… Thomas, your next in line. 

Thomas:

Hi, I’m Tomas Goode, and I am a multiple myeloma survivor. This year, 2023 makes 18 years for me. I was diagnosed at a very young age of 34 years old, and I am now living with this disease, and I want to show everybody how to… How I utilize my time to live with this disease. 

Lisa Hatfield:

Alright, thanks, Thomas. Donna. 

Donna:

Hi, I’m Donna Landsman, I’m also a diffused large b-cell survivor. I was diagnosed in 2013. I was re-diagnosed two years ago with follicular lymphoma, which is indolent and slow-growing, and honestly, if I never have symptoms, I never have to be treated, so fingers crossed. 

Lisa Hatfield:

Alright, we’re crossing them. Thanks, Donna. So, I was going to just mention, you guys can jump in a time… How all four of us met, we came together just a few months ago, I feel like we know each other super well now because we’ve stayed in contact, but in case anybody is wondering, we were brought together by the patient advocacy segment of a biotech company on the east coast near Boston. We did not know each other prior to that, and we worked on helping this particular organization understand the patient perspective, we also did a couple of activities where we all tried to support other patients who are… Who are may be located in hope lodges or receiving treatment and staying in hope lodges around the country. So over the course of two or three days, the four of us who were complete strangers coming together, had the best time together, at least that’s my perspective, I might be projecting that on to you thinking I had the best time, but we had a great time together, and I’ve always tried to maintain a decent attitude, a pretty positive attitude about my cancer and my diagnosis after having met the three of you and working together, it really reinforced how important positivity and having a sense of humor, even if it’s about our cancer, which we’ll talk about a little bit later.  

So, we’re going to be talking about humor and cancer, and that incorporates anything about positivity and cancer humor or laughter, happiness, they’re all different, but I think pretty important in dealing or coping with our cancer diagnosis. So just wondering if any of you have anything to share about how prior to diagnosis or just in life in general. So, anybody watching this has some thoughts or tips on what do you do to create more humor in your life or to acknowledge more humor, to be more humorous or have more positive in your life? Donna, any suggestions, any thoughts on how you… 

Donna:

Well, you know, you kind of brushed upon a subject a little bit it before, and so I really do need humor in my life, I need comedy, and so for me, I try to watch whatever I can… Like you had mentioned, America’s Funniest videos, I watch comedians. You know our own personal experiences, like with Sebastian Maniscalo, I listen to a lot because I relate to that type of humor, and so that actually took some of the edge off of a lot of my uneasiness or when things were like a really dark, deep day for me, I really look for humor and I need it, and you know like you said, we can find humor of going through our cancer experiences, and some of it is relatable and some of it isn’t. For some of it we can say Ah ha, yeah, I’ve been there. And so, it’s a way to touch upon something that another person can relate to, so I thought that was… I really liked the subject because I think we need more humor, and I think it needs to be lighter, so… It’s great. Yeah, really. 

Lisa Hatfield:

And Thomas, I know both you and Donna mentioned, it doesn’t really have to be humor, but even how you cope with some of the things that you talked about, working out, exercise, so you can talk about humor or exercise or both, how you used those for coping mechanisms. 

Thomas:

You know with humor, I utilize my groups, this group that I’m in, my group of guys that I ride my bikes with, the group of guys that I exercise with, we all keep each other laughing so much just by sending us stupid stuff we find on the internet, TikTok, whatever, and that really enlightens our day. But another coping mechanism is me in the gym. All throughout my myeloma journey I’ve utilized that as a way of outlet… A way of de-stressing you realizing that as an opportunity to take out everything that I have on the exercise equipment versus me sitting in and thinking about it, so I like to cope with anything that I’m dealing with in the gym like that. 

 Lisa Hatfield:

That’s awesome. And Thomas inspires all of us by sending pictures out so we can see him in the gym, makes us get up off the couch or you guys probably are good about the other two ladies, I’ll be like, Oh, I better get moving cause Thomas just sent a picture, I’m better going to do something. So yeah, Donna go ahead. 

 Donna:

I wanted to say that actually, I tell my children, I tell everybody that exercise is my drug of choice, and I exercise all through my chemo treatments, whether I did five minutes, whether I did seven minutes, my gym was open in my building 24 hours and I just needed to get down there to do something, and it was really a way to release… We really weren’t able to drink alcohol and not that I drink a lot anyway, but I needed to do something and the physical outlet was the best for me, really. And so, I’m with Thomas. Thomas and I worked out the day of our last day in the Boston area. 

Diana:

We saw the pictures. 

Thomas:

Yes, we took a one-handed selfie. 

Diana:

I agree, I think exercise is a great release, and for me, if you… I went to yoga classes when I was going through my treatment, and if you saw me trying to do some of the yoga poses, that in itself was very humorous. I get tangled up. 

Lisa Hatfield:

I’m like you guys, I like to work out. I don’t work out as much as you do, but I go for walks and whatnot, and that definitely helps me cope, and also just being around my friends. Thomas mentioned being in groups, but being around other people… I have a friend who is Greek, and she embodies that Greek passion and exuberance, and she is the side of me that… Things that are going through my head, she says them out loud, I love being around her, and I’m just going to mention this really quick, cause it has to do with my friend who’s that with my friend who is Greek, but Diana is an author, like she mentioned, she wrote, I have this book as my prop here, The Perks of Having Cancer, and no, Diana has not paid me or bribed me, or even given me chocolate for talking about her book, I just talk about books, that I like to read, but there’s one excerpt in there about watching  reality TV, and it references Dr. Pimple Popper. Well, what I did actually right after I was diagnosed for fun, I think was I never watched reality TV, especially the really gross things, but I found it the grossness of that kind of funny. 

So, I talked, I asked my best friend one night. Let’s have a gross TV night and watch something, not Dr. Pimple Popper, but just totally disgusting called The Toe Bro. And I might add, if I’m allowed to say that we do happen to have a retired podiatrist, so talking right now, Donna. So, where she might make money off of looking at feet… I’m disgusted by feet, so we watched The Toe Bro and my friend who has no problem making she’s full of one liners, she’s ridiculously funny watching The Toe Bro. She was making comments, I was laughing my head off, watching reality TV, which is so out of character for me anyway, that’s how I found humor and laughter, I guess before and during my treatment with my myeloma… Go ahead Donna. 

Donna:

In my defense as a retired podiatrist, I just want to say that it’s better than some of other aspects of our anatomy, so toes were fine for me