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Feb. 9, 2022

Episode 12: Pursuing Joy When You Have Cancer

Episode 12: Pursuing Joy When You Have Cancer

   Joy Huber, a stage 4 cancer survivor,  was diagnosed with stage 4 cancer at age 33. Joy endured three years of chemotherapy suffering the complete loss of her shoulder-length hair. During her cancer journey Joy discovered, “While no one’s happy they have cancer, you can have cancer and still be happy.”
   Joy launched the “Dose of JOY” Podcast to serve as your personal guide to cancer. The podcast has a lot of helpful information and includes 'must do's and never do's' to help you on your cancer journey, or as you support a loved one on theirs. Morgan James Publishing of New York City published Joy’s book titled “Cancer with JOY.” She has blogged for The Huffington Post, and received standing ovations when speaking to cancer patients & survivors. Joy’s unique approach to her total hair loss was featured in “Coping with Cancer” magazine. Joy’s Master’s degree is in Health Communication, and she is professionally trained in coaching individuals through Coach U. “Like” the “Dose of Joy Podcast” Facebook page to receive links to the helpful resources Joy highlights on her show.

Find the Dose of Joy Podcast here.
And her book here.

Here are some resources she recommends:
American Cancer Society
American Society of Clinical Oncology (ASCO)
Imerman Angels Cancer Support Community

Support the show (https://www.buymeacoffee.com/melissaebken)
Transcript
Melissa:

Cancer. That word stops us in our tracks. If we hear it about ourselves, from our doctor, if we hear it about a friend of ours, That can stop everything. Uh, today I have a very special guest. Her name is joy. And joy faced cancer when she was 33 years old. She was diagnosed with a stage four cancer. Other organs were involved. The future did not look bright. But joy faced her cancer. She overcame that cancer. And she is here to share her story and what she has learned. A lot of do's. And don'ts, if you have been diagnosed with cancer, a lot of do's and don'ts if your friend or a family member has been diagnosed with cancer. So this podcast is a powerful show. You don't want to miss this. Tune in and listen to what you don't know, but you need to know. If you or someone you love has received this diagnosis Hi, welcome back to the pursuing uncomfortable podcast. I'm Melissa Adkin. And today I have a very special guest that I'm bringing you. Her name is joy. And as I mentioned in the intro, what an aptly named human being, she is joy. I am so glad to welcome you to the podcast this morning. How are you to.

Joy:

I'm doing great. And thank you so much for having me on just as we've connected. And that word is very true. We connected, and I really look forward to bringing these messages to all of your listeners. So thanks for having me. Absolutely.

Melissa:

And I'm not even sure where to start. Your story is so compelling. And the way you faced your cancer diagnosis and what you have to share with others who may have just received a cancer diagnosis are, or are in the midst of treatment. You have so much to share. So I'm going to quit talking and I'm going to let you get started. So to kick us off here, what would you say is the biggest deal? If you just received a cancer diagnosis.

Joy:

Yeah. So definitely I have a whole chapter in a book I'd written a years ago after my diagnosis called cancer with joy. But my number one do is, do get a second opinion and I did this and I think it's just good to go to another doctor oncologist, a medical specialist and have them. Confirm the diagnosis and have them weigh in on the proposed treatment plan. Uh, so like I said, I saw an oncologist and he actually suggested someone I could go see, um, if he hadn't have, I probably would have looked for a person that I could have gone to as well, but, you know, just getting that confirmation and just having them say, Hey, I agree with this plan of doing, in my case, it was. The six cycles of chemotherapy initially every three weeks apart. So really pretty often I know a lot of individuals though are going to radiation or chemotherapy daily, so an even more intense treatment schedule. And then once I achieved remission, we moved my chemotherapy to every other month. But yeah, definitely get that second opinion.

Melissa:

When I was a kid, I was a bookworm. I always had my nose stuck in a book. And there were so many books about, um, teenagers or preteens or kids. My age, when I was reading the book whose mom or who's dad, or whose grandma had been diagnosed with cancer. And in that day in time, that was a death sentence today. That's not necessarily the case. However, that word cancer is just devastating. How do you begin to orient yourself in the midst of that word, in that diagnosis?

Joy:

Yeah, definitely. And you know, one of my favorite quotes I ran across during my battle was cancer is a word, not a sentence. And I stopped to think about that. And that was really an inspirational quote or meaningful for me because I like you. As a child, uh, my grandpa actually passed from cancer. He was a smoker and had lung cancer and emphysema. Um, and so, you know, found out about his diagnosis, unfortunately around Christmas and, uh, had passed by the next summer, you know, so quite quick, but these days there really is a lot of hope. And so I want to inspire others because, Hey, I have. Stage four cancer and there is no stage five, you know? So it had spread, uh, major organ involvement, lymph nodes, of course, bone marrow, um, all of that. And so, but like I said today, there's just so much that can be done. Um, you know, but I, I tell people too, one of my dues is, do get. Mad or sad. I even write, do get bitter or depressed. Um, for a little bit, I did a little bit of why me and I think a lot of people might think, Hey, why me? Why is this happening to me? And that might be part of working through those stages of grief, because you really are. You're mourning the loss of your. And somewhat the loss of your life, as you know, it, it's going to change with treatment and potential hair loss. Um, you know, when I quickly moved to, well, why not me? Because it's like, Hey, there's really nothing. That's special about me that says I should get to be immune to cancer when, how many others have to face it. So I quickly said, why not me? You know, I think statistics say. Three women. And I believe it's one in two men will face cancer at some point in their life. And I'm so glad you've chosen me as a guest for your, your big show, uh, to do an episode on, because like we were saying virtually everyone, if you're not facing cancer, you know, someone who is, uh, but when you're first diagnosed, I mean, We've heard mind over matter. We hear laughter is the best medicine and I tried to get there, but you have to give yourself permission to essentially, like I said, more than the loss of your health or work through those stages of grief. Uh, and so I always tell people, feel the emotions that your natural. Feeling don't try to suppress or fight them off because how have you ever noticed when we try to suppress our emotions? They bubble back up, absolutely

Melissa:

authentic emotions, whether it's cancer or anything else, be authentic to yourself, feel what you feel do you don't necessarily want to stay there, but if you want to move past or beyond, then you have to be authentic with what you're

Joy:

feeling in the most. Exactly. Exactly. So, yeah, so, you know, I mean, like I said, I'm not going to say I got this diagnosis and I was all positive, you know? I mean, I always tell groups, I speak to, I say, Hey, you know, the idea behind this is to try to have more good times or good days than bad days, but you'll definitely have those bad or down days. Um, there will be days where you'll throw yourself a pity party. I mean, there were days when I would feel sorry for myself. I was. 33 when I was diagnosed with stage four cancer. And so again, some about why me, um, you know, you meet up with friends and, and they would say, well, my grandma had breast cancer or my uncle had lung cancer, but meeting my friends. Thirties. So many of them, you know, they hadn't had a personal cancer experience. They couldn't relate. And I remember going to see some of the specialists and sitting in the waiting room, waiting for them to call me back to consult with the doctor. And yeah, the waiting room looked a lot, like, uh, my grandparents sitting there and I would almost look for those who were like me. Oh, well that lady over in the corner, she, she looks young too. You know, you exchange a warm smile or a knowing glance of, Hey, we're awful young, but we're going through this too. Um, but like I said, initially, there's definitely a lot of hope these days where cancer's not. The death sentence that it used to be, you know, the quick, there's so much that can be done these days. And that's where I do want the listeners to feel hope and to get those second opinions and, you know, find out about different. Treatment options. One thing I do want to stress I think is really important is to get credible information these days, there can be so much misinformation flying around and, you know, instead of your friends might mean well, but if they say, well, Hey, my aunt says. That there's this supplement that you need to take and she sells them and it's like, you know what, let me do a little research. Uh, is your aunt a medical doctor or a cancer oncologist? Because like you said, that word cancer. People just take that word and their mind goes immediately to what experienced or knowledge they have. But that might be misinformation that may not be credible or good information. And we can get into some of the best sources, uh, along with the dose of joy podcast. I really try to guide people facing cancer to those credible sources will

Melissa:

joy. I want to get into that. I want folks to know that you have a book face and tell us the name of your book.

Joy:

Yeah. Yes. So the book I'd written actually about a decade ago. So after I had been diagnosed in 2010, it's called cancer with joy. And since my name is joy, it's very literally, uh, facing cancer with joy with me personally, a really guiding you, but facing cancer with. Figuratively as well. Um, and that you can grab on Amazon. Uh, it's still available as a paperback and ebook, even an audio book. Uh, and then, like I said, I developed the podcast, the dose of joy podcast, uh, started that in the fall of 2021 to really kind of give the up-to-date the current. Information, but I know a lot of people love to have a paperback that they can hold in their hands, that they can go to and reference. And I even pull from the text, uh, in some of my podcasts as I'm sharing do's and don'ts at diagnosis or inspirational stories of others. Uh, and all of that can be found in the book cancer with joy, with me,

Melissa:

and all of those links will be in the show notes and then the descriptions. So. If you are driving, or if you didn't get all of that, don't worry. Check out the description. All of those links will be there for you. One click and you can be connected with all of that. But I do want to talk about information because I am so guilty of this. When I hear of anything, if my knee hurts or my ankle hurts or my back hurts or anything, if I have some strange looking thing on my hand, I go to Google. I know that's not good for me. It is not good information necessarily. That's not great for my mental health. What do we do? What to get information when it comes to.

Joy:

Yeah, so great, great question. And Hey, I'm guilty of it too. Right? We get conditioned to Google or Hey Siri, you know, ask Siri any of our questions and have results returned to us in a fraction of a second. But, you know, as I wrote in my book, it's like, here's the problem with that? Um, the information you're getting who provided this information, what are their credentials? Where did they go to medical school? You know, when you start just Googling questions and clicking on results and reading, whatever you find without really finding out or considering the source, um, you're really opening yourself up to the possibility of receiving a lot of in accurate information. And the big problem is that could terrify you. On necessarily. Right? So, you know, if someone's good at search engine optimization and they've gotten their information to pop up there to the top, uh, so resources that I really recommend as that guide to cancer, first off cancer.org. Everyone knows about cancer.org, because that is the American cancer society's website. And you know, there, it's not just about volunteering or donating. They have such a wealth of information. And I pull from them frequently in the podcast as I'm siting things. I also share that. Specific links off of cancer.org on the dose of joy podcast, Facebook page, because Hey, I've landed@cancer.org and it can get a little overwhelming, there's so much information, and that's why you really need that guide to cancer. Who's been there, uh, to guide you to very specific areas or lengths, uh, but cancer.org. I wholeheartedly recommend, I'm going to tell you. And your listeners though. One that seems to be a secret it's like the best kept secret. And I wish it wasn't. I wish it were out there. So I want to get it out there. cancer.net. Cancer.net. That is the, yeah, it's the society of clinical oncology comes from ASCO. Like I said, the society of clinical oncology is what that stands for. And so. Essentially doctor approved information available. And again, I pull from that a lot in the podcast too. Um, so yeah, so I really do caution listeners to be careful about Googling your diagnosis, uh, cancer.org, cancer.net. Those are a couple of great resources right off the cuff

Melissa:

and cancer is a really generic. There are so many different types of cancers. So if I have colon cancer or if I have, um, pancreatic cancer, melanoma, lung cancer, are all of these addressed in these websites or are there specific places that would be more.

Joy:

They are actually all addressed. So yeah. So cancer dot organ cancer.net have where you can drill down into specific types of cancer. Uh, what I also do on the podcast is I look at, Hey, what awareness month is it for cancers? And then I'll do a show really highlighting. Uh, so you know, so for example, if you've been diagnosed with breast cancer, uh, you could go to. To joy podcast and scroll back to last October, just a few months ago, where I created a show all about breast cancer and pulling from the cancer.org, the cancer.net, but also pulling from other resources that I site, um, because you know, the one thing or two things actually that people don't have when they get diagnosed with cancer, one is tough. So all of a sudden they don't have time. And that's where I find I'm becoming more popular, uh, being that guide to cancer who's been there because people are trying to work. You know, maybe they're trying to get family medical leave. I get time away from their job, but that time is consumed with going to doctor's appointments, consultations treatment. Tests, you know, there might be CT scans, biopsies. I know all the things I went through and family. Hey, what if you're a mom, a dad, a brother, a son, you know, these days so many are in that sandwich generation. They're caring for aging parents. They may also have children in the home. And suddenly it's almost like adding a cancer diagnosis, just boils the water over the pot and they do not have time. And so, yeah, that's where I really want to guide people. The second thing they don't have as energy seems like that is gone. Um, you know, their emotions, they may not be sleeping well. They're very. Drained. And so I really serve to help, um, others, you know, in January it was cervical cancer awareness month. So if you're facing that cancer, I did a specific show and you can go and say, Hey, what's the latest on cervical cancer. Um, as far as research support communities, all of that

Melissa:

tell you what a gift you. You know, when I think of cancer along with that comes this idea of, oh, what about my hair? Did you lose

Joy:

your hair? Yes, I did. And, oh my, have some emotion here as we talk through that, because as I mentioned, I was just 33 when I was diagnosed and I actually found. My hair loss. To be the most emotionally painful thing that happened to me throughout my journey. Um, you know, not the most physically painful, of course there were some procedures or, you know, some other things that caused the physical pain. Emotionally. And I'm often asked to speak about this. You know what I'm speaking at hospitals or cancer treatment centers. I speak to a medical staff as well as groups that have just been diagnosed, a survivor groups, you know, to celebrate overcoming and one. Encouraging story that it seems virtually all the groups want to hear is my unique response to my complete hair loss. Uh, this actually was featured in a magazine called coping with cancer magazine. And those listening that are facing cancer have probably seen that magazine in their doctor's office or their hospital. It's typically sitting on the waiting room table. I was told at diagnosis at that time I had shoulder length hair and I was told, oh, you have pretty hair. You know, it's thick. They said it will start to come out in a few weeks and you know, that's another one of my dues is, do control what you can. Right, because suddenly there's just so much that's out of your control, but control what you can. And that gives you a sense of maybe calm or peace of being able to, like I said, take control or control what's within your power. Uh, so when they said your hair is going to come out, I thought, well, what can I do about this? Hey, I decided to cut my hair very short, right. That way I don't have these long chunks of hair coming out on my pillow. So I cut my hair really short. I actually loved it and thought, well, I can't love it too much because it's probably going to end up falling out completely. And it was, uh, I actually took a hair loss shower that was. Oh, there's that lump in the throat. That was extremely, um, difficult because I got in the shower and when the stream of water hit my head, you know, the hair was loose. And I actually, um, I heard, uh, a splat sound on the drain cause it was all my hair hitting the, just with that splat. And I knew what it was. And of course I turned to look. My hair was, you know, and I just began sobbing and, you know, so incredibly, incredibly difficult, um, shower. And again, I thought, you know, this is really hard. It's like, what can I do? Um, what can I control about this? You know, I can't control that my hair is going away. Um, but what I decided is. I could sit here and cry, which I did. I'll admit on the tub drain. I sat there and saw it for a little bit. And then I thought, you know, I can feel sorry for myself. And where does that get me? I'm still fighting cancer. I still have to go to chemo. I still have to go out in the world, bald, you know, I'll need a prescription or groceries at some point. So I just decided, instead of sitting there literally feeling sorry for myself, when my hair started falling out, you know what? This is the time where I could easily try out different look. You know, for a woman to change her hair, what do we have to do? Like we sit in the chair and cut it short, and then we're like, but what if I don't like it short, you know how hard it's going to be to grow it back out. The awkward stages I go through, you know, if I color my hair, what if I don't like that color? And then I'm stuck with it for a while, right before I can. Hey, you know, All of a sudden, none of that, I could easily change my look with wigs. And so I gathered a variety of wigs. I thought short hair, long hair, you know, different colors, um, I'm brunette, or maybe a little more dark blonde. And I thought let's give the red head look, you know, and, and try that out. So I'll tell you what I did. I gathered all these different wigs, different lengths, different colors, different styles had a family member. Take pictures of me essentially modeling these different looks. And we posted all these pictures to my Facebook and I had a CaringBridge site and, you know, I said, Hey, full disclosure. We've reached the part of treatment where my hair. Coming out. Um, I went and had my head shaved again, taking control of the situation, what little was left. I thought let's just get rid of it. And, uh, so we posted all these pictures and I said, Hey guys, I want everyone to get involved and react. You know, like comment, essentially vote on what your favorite new looks of mine are. I mean, I don't even know if I should say that, but it's like it transformed hair loss from something traumatic, terribly traumatic to almost something fun because all of a sudden I could go to Facebook and all my friends were chiming in and I tell you, it gave them something to do to in the moment when they were kind of going. Awkward, you know, you're 33, you're facing stage four cancer. I don't know what to say. I don't know what to do. And this gave them a way to go, oh my gosh, you're adorable in super short hair, or I love this ball cap, or I love this little plaid cap that you've attached. Um, and you know, letting them react and vote was just a wonderful way. Like I said, to get them involved and gather some much. Much needed support and encouragement for the battle that lied ahead.

Melissa:

Well, Joey, that brings me to my next question. How can you be a support to someone who is battling cancer? You have the dues, give us some, don'ts give us the, never say this and give us some ideas of what's helping.

Joy:

Yeah. Great. Great question. Because like we talked about before we started recording, if you're listening and you're not facing cancer, you probably know someone who is facing cancer and you're supporting them. It's someone you go to church with. It's a coworker, a dear friend know. Family member. So, yeah, I'd start off with a don't, you know, I wouldn't tell them about someone, you know, who had cancer and died. Um, and again, like I say, a lot of people did that to me because they're taking that word cancer and just associating it with whatever comes to mind. And so people would go, oh my gosh, you have cancer. You know, my sister-in-law had cancer. She didn't make it. Thanks. Thanks so much, you know, that's, uh, that's really encouraging right now when I'm obvious,

Melissa:

but terrified that just would naturally

Joy:

flow. Yeah. Yeah. So like, say I, you know, I think sometimes we, we speak before we think, right. We just take that word and whatever. Thinking comes out. So yeah. So definitely don't tell them about someone, you know, who had cancer, who didn't make it, uh, you know, another don't would be to just say, oh, I know exactly how you feel. Cause I had people who would say that, they'd be like, oh, I know exactly how you feel. Really cause are you, are you 33? And are you, are you diagnosed with stage four CA you know, it's like, you're not, you know, you're not facing that. You're not dealing with complete hair loss. You don't know exactly how I feel. And of course two people will face the same thing very differently. Um, so, you know, so don't say that, uh, one thing that I found that I've loved and have seen, that's been really. Well is, you know, maybe instead of saying, Hey, what do you need? You know, what do you need? If you think of anything, let me know. Hey, how about if you offer something specific instead of so open-ended or Hey, even better as a do, give them a choice. Hey, so I'm going to do something to help you. You know, you are my dear, dear friend now, would you like me to come pick up all the laundry? And I mean, all the laundry, yours, the kids hobbies, and I'm going to take it and do it and return it to you. Clean, dried, folded pressed. Oh. I don't know. Maybe you liked doing laundry friend. Maybe you hate to cook. Maybe you'd rather, I go pick up dinner any night. This week, tell you what a night of your choosing. You send me the order. I will pick it up again, deliver. And just one little thing I can do to be there for you. One less thing you have to think about. So what a great idea, instead of saying. If you need anything, let me know, you know, do something specific that says I'm doing something for you this week. Um, how about a ride to treatment? You know, people offered to come sit with me at chemotherapy. Um, so, you know, so there's a ton of things that you can offer to do. Um, I know when I've had friends go through things, I've even said, Hey, I got. No, what to say right now? Cause I think that's what a lot of people say is, I don't know what to say. This is so awkward, but I just tell people, Hey, I don't know exactly what the right words are to say right now, but I know I talk a lot, but I can be a really good listener too. So I'm just going to listen and whatever you want to talk about, whether that's. Cancer, you know, fears, anxiety, whether it's the kids and the eighth grader play in too many video games, but, you know, I'm just here to listen to what ever you want to talk about and, and just be there. So people know that they aren't alone. Um, so hopefully that's some great tips from don'ts about some dues for those supporting the person going through cancer. Joy. Thank

Melissa:

you for all of this. You've given us so many practical things that we can do. If we've been diagnosed a lot of practical things we can do and not do. If we know someone, when we know someone who has been diagnosed, what else would you like to leave us with too?

Joy:

Yeah. Yeah. So I often say, um, the three things that you need when you're diagnosed is resources. And like I said, the dose of joy podcast takes you directly to resources. We've got specific episodes on do's and don'ts when you've been diagnosed with cancer, that will go into more of my do's and don'ts that we have time to get to here today. Um, the second thing I say you need is something. Right. So you do want to find someone who's been there. That's one of my dues. Um, my friends, my friends are great. But they didn't know exactly what I was going through in that moment. So it's like, you need to find someone you can connect with. Um, I actually offer ongoing coaching where if people want to talk to me, I've been professionally trained in coaching by coach you, or they can just set up one call with me if they say, Hey, I just want to do a quick consult and tell joy my unique situation. Um, also another resource I suggest for free campus. Court is Imerman angels and you can go there and sign up. You can even get support if you're the caregiver for someone facing cancer. And I volunteered with them. Uh, the cool thing about Imerman is they try to match you up with someone just like you. Uh, so you know, so when. 33 year old woman, a Caucasian female. You know, they're going to try to find someone as close to me, same type of cancer, same age, or as close, uh, you know, same ethnicity. Um, so support is so important. So you really do have someone who understands and how do you spell Emmerman? Yeah. Great question. So Ammerman I am E R. A N. Angel's just a N G E L S. And yeah, if you, you know, we just talked about not Googling your diagnosis, but if you Google that specifically, they'll come up. I think it's Imerman angels.org or, or.net. Uh, and you can request as a, you know, a caregiver or someone to support you through cancer. The third thing I say you need is encouragement because you know what? Courage is the opposite of fear. And chances are when you're diagnosed with cancer, you may be feeling what I felt that paralyzing fear of the unknown. And you know, when I coach people, I really try to get to the root of that fear. And it's like, what are you afraid of? Well, I'm scared I'm going to die. I'm scared. I'm not going to make it. And I really get into. Well, why are you scared of dying? What you know, and that's where you surface really great actionable things. Um, you know, where maybe you see people move up holidays or move up, you know, because they want to be there for a wedding or a milestone, you know, or be able to take part in that. But yeah, if you can get that encouragement, uh, which that dosa joy podcast really provides, you know, that helps to counteract. Paralyzing fear that you may be feeling. Uh, but I didn't by saying know that you're not alone. You know, how many others are facing cancer, know that there's tremendous hope and a ton of resources out there to help you. Um, you know, so that gives a lot of comfort, I think, at a, at a difficult time. So I hear

Melissa:

you say, get resources, get some. And get encouragement.

Joy:

Exactly.

Melissa:

All the links that you've provided and have mentioned. We'll have it in the show notes. I will Google Imerman angels and I will have that link available as. Joy. Thank you so much for sharing everything about your journey while you probably didn't share everything about your journey, but you should have quite a bit. And thank you for that. And thank you for all the resources you provide and thank you for making yourself available to be that resource, to be that support, to be that encouragement for others.

Joy:

Absolutely. Yeah, that's really my goal. You know, people say, Hey, your parents named you aptly. Of course they didn't know when I was born, but, uh, a lot of times people say you really do live up to your name and yeah, that dose of joy provides that shot of encouragement, that inspiration. That helps, like I said, compliment what you're doing from a medical standpoint to treat your cancer and overcome, but thank you so much for having me on you are wonderful and I've so enjoyed connecting and getting to speak with you. And I look forward to sharing this with all of your listeners out there of your show.