Caryn Sullivan on Living an Intentional Life

In 2004, just three months after her wedding, 31-year-old corporate giant Caryn Sullivan was diagnosed with breast cancer. Caryn’s treatment of choice was aggressive therapy; she had a bilateral mastectomy followed by chemotherapy. Physically and emotionally, she was a mess, she recalls, until she got the green light. She was cancer-free. 

She jumped back on the corporate bandwagon believing she was one and done, and nine years later, the cancer returned. Caryn was diagnosed with Stage 4 metastatic breast cancer. 

The young, corporate mother was determined to beat the odds. “It was devastating, but you don’t have to be devastated,” she reflects. Instead of trying to survive, she was going to thrive.

She changed her eating habits overnight, started taking hot yoga classes, walked away from her corporate job and started her own business dedicated to inspiring others to improve their health and happiness. She even wrote a book – Happiness through Hardship, a practical guide full of ideas for cancer patients to help them navigate their unexpected journey. To hear Caryn’s inspirational story, listen to The Breast of Everything podcast, hosted by Comprehensive Breast Care Surgeons Linsey Gold, DO, FACS, FACOS; and Ashley Richardson, DO, FACOS.

Transcript

Announcer  0:01  
Welcome to the breast of everything podcast your trusted resource for breast health information support and encouragement. Your host today are Dr. Ashley Richardson and Dr. Lindsay gold of comprehensive breast care. Welcome.

Dr. Ashley Richardson  0:15  
Welcome to the breast of everything podcast. I am Dr. Asher Richardson of comprehensive breast care and I'm joined by my partner, Dr. Lindsay gold. Today, we're happy to introduce Karen Sullivan, a two time breast cancer survivor who changed her life's focus when she learned she had stage four breast cancer. This was her wake up call. Previously, she had dedicated 20 years of her life to her career where she was working in the world of sports and entertainment, largely for Disney ESPN as well as the Minnesota Timberwolves basketball team. Her long and intense hours often were fueled by soda pop and chips. Her diagnosis was the message she needed to realize how precious life is. That's when she changed her focus and started a business called pretty wellness, a healthy lifestyle media and content creation company designed to inspire others to take small steps towards improved health and happiness. Today, she will share her story. She will talk about embracing wellness and creating an intentional life, all from the perspective of breast cancer survivor. Karen, thank you so much for joining us.

Caryn Sullivan  1:13  
I am so happy to be here and I love of the entire intro to me that you called it pop. Oh, yes. I grew up in the Midwest too. And moving now to the East Coast. Everybody calls it soda, soda soda, and I swore I was never gonna call it soda. But somehow after 20 years, but I do love my I used to love my pop.

Dr. Ashley Richardson  1:40  
Well, I have a hard time even saying soda pop, I just have to eliminate the soda part. So I'm glad you picked up on that. Well, we are certainly super happy to have you. And I think one of the things that we want to start with was just having you share your story as a two time breast cancer survivor. And, you know, how did you initially find out that you had breast cancer the first time? Well, if we

Caryn Sullivan  2:00  
had 17 years, I could share all the details. But to put it briefly in 2004, three months after my wedding. I was 31. And by the way, I had no family history. But I knew that a limp lump was bad. Right? All the awareness campaigns, all the walks that I did when my husband and I were sitting there in bed talking and we felt a lump, but decided to go get it checked out. So fast forward a few weeks later, and I find out that I have invasive ductal carcinoma which to you guys. That's your regular language. But when I first heard that I had the back and forth in the back and forth in my own head being like carcinoma. That sounds bad. But is it cancer? He didn't say cancer, but is it cancer? Could it be cancer? Well, as I learned, it was staged to a cancer. And because I was so young, and they we believed other than the cancer of course, that I was pretty healthy. We decided to go with an aggressive course of action which was 16 weeks of chemotherapy, a CT Adriamycin and Cytoxan and Taxol. We chose a bilateral mastectomy as well with reconstruction. And so as you know, that was probably about a year's worth of intense from the surgeries to the chemotherapy, the losing of the hair, the emotion of all that the ups and the downs and the fears and the scares and about a year into it. We then I guess declared me cancer free. Because my scans my tumor markers were all good. And so I went along with life. I was on letrozole. No, excuse me, I wasn't on letrozole. I'm on letrozole. Now I was on Tamoxifen. And I fared very well on that. And I jumped back into my corporate life, believing that cancer was behind me. Mind you, I still am a good patient. I was a good patient the whole time. But I believe that I was one and done. And what I often say to people is my first cancer wasn't when I had my aha moments. Yes, I was a good patient. Yes, I listened to what my doctor said, but I believed that I would just walk away from it. And for some people they can and they do, but not for everybody. And I was one of those nine years later, it came back. And this time it was metastatic breast cancer and the sternum and the spine. And so it was then that I had this aha moment because at the time when I was told I had stage four disease. All I knew was that people got stage four, they died and they died quickly. And I think At that point, I had a five year old miracle baby. I did not could not, obviously didn't want that to be my story. And I'm so incredibly blessed and lucky that here I am on this podcast chatting with you both. And it's eight years later. So I've not only beat the odds once, twice, I think I'm on the third time beating the odds, in terms of what a typical prognosis is for stage four. And so I know I'm very lucky in all of that.

Dr. Ashley Richardson  5:31  
That is, that's really tough to go through emotionally. Not only physically, but definitely, definitely emotionally.

Caryn Sullivan  5:42  
Yes, I mean, it. I think when you hear the word cancer, depending on what you know of from your past, it brings a whole range of emotions. What I learned the first time very quickly, almost within just a few months, was that yes, cancer is devastating. But you don't have to be devastated.

Dr. Ashley Richardson  6:11  
Good point. Definitely a good distinction there. Can you you know, you mentioned that when you were diagnosed the second time, it was a different mentality. First of all, how did you identify the lesions in the bone? Did you have any symptoms? Or was it routine screening,

Caryn Sullivan  6:28  
because you asked the it wasn't routine screenings, and I didn't have? Well, I didn't believe I had any side effects. I decided for my 40th birthday, because when I got married, I was 31. Nine years later, it was my 40th birthday, I wanted to do something special, because I was actually in grad school. All the parties that people were throwing or the vacations that they thought of going on. I didn't feel like I could spend that type of money. But when I heard about this place called the Princeton Longevity Center, it's one of those fold a doctor's like executive doctor's appointments, where you go in and you get various scans, you meet with a doctor who goes through your bloodwork you meet with a physical therapist, you meet with a nutritionist, I thought it was a really interesting concept. And while I had insurance and still went and saw my oncologist and things, I went there, honestly believing that I was going to be going into my 40s With this new bill of health because obviously I went into my 30s Being sick with cancer. And so it was there where they saw the suspicious suspicious lesion on my sternum. Now, I believe my tumor markers didn't show anything, which is, you know, both his oncologist, they don't always do it. I believe that at some point, my hospital would have caught it. But I hadn't been for a scan in a few years, which was typical of where I was at in terms of how many years out I was, in hindsight, I do remember, sometimes feeling some discomfort in the sternum area. But honestly, I believed that I was reconstructed. And so because of that, sometimes things is you know, you're my chest was different post surgery than it was before. And so you know, in hindsight, I would say, if you feel continual discomfort, bring it up, go to your doctor, maybe even a different doctor to find out. But lo and behold, I got to where I needed to be. And so that's actually how we figured it out.

Dr. Linsey Gold  8:43  
So Karen, that's a really good point. In summary, you're saying pay attention to your body, and advocate for yourself. So you were talking about being a good patient? Which one I'm listening to you kind of sounds like at that point in your life. It was doing what you're told, right? following directions and following rules. It sounds like after the second experience, you became a different kind of patient. Right?

Caryn Sullivan  9:14  
Oh, you know me. So that is it. That's exactly it. I was a good patient. Initially, in that I followed, I did what they said, you know, through it all through all of it. The second time, I really turned into more of a patient advocate. Yes, I still listen to what my doctor say. But I also come to the table with new knowledge and that new knowledge could come from anywhere. Yes, as much as I will say, Google is not your doctor. And I really encourage people not to go to the internet if they need to have somebody else do it for them, because they don't want to stumble upon false information. Yeah, wherever you get your information, then bring it to your medical team and talk it through with them. Yeah, I jumped into trying to be a student of my own business. I laughed because at ESPN, the President, for most of the years when I was there is a man named George Bodenheimer was brilliant and used to talk to us all about being a student of the business. So here I am, getting, you know, this cancer diagnosis at stage four, it's gloom and doom. And I decided, you know, what, I know how to be a student of the business, I'm going to be a student of my own business. And so that is when I started to do a deep dive into who was thriving with cancer and what they were doing to be well, now, because I also believe in science, and my medical team to things that, you know, you find a medical team that you trust, and put some trust in them. I did go to them. And this time, I would ask a lot of questions. And in some ways, challenge them not in a fighting kind of way, but in an inquisitive way.

Dr. Ashley Richardson  11:14  
Absolutely. I love when patients do that. I knew you're gonna say that, because Lindsey will always say, you know,

did you Google? Or did you look on the internet before coming? Because we do like patients that have questions. I think it makes the consultation and the interaction go better, because they are listening to what we're saying. And we're listening to what they're saying. So part of you kind of taking over your your new life was making some changes. And how did you start with those changes? Where did you begin?

Caryn Sullivan  11:41  
What's interesting is that I really, I really felt like there was going to be something there with diet as a girl who grew up in the 80s and 90s. And always cared, I would say about health and fitness. I knew that there was importance in terms of nutrition. But keep in mind, this was the 80s and 90s, where we ate fat free frozen yogurt and thought that was healthy. And we joke around about the bake lays in the diet soda, right? So I actually called in very lucky for me, my childhood neighbor lived overseas. And when I couldn't sleep those first few months was stage four. I called her at three o'clock in the morning, our time and I was like I can't sleep, can you help me navigate the Internet, I don't want to stumble upon an information that's going to freak me out. But I want to know, what people are doing with terminal cancer, whether it's breast cancer or not. And I stumbled upon a number of let's call it wellness trends, Whole Foods, plant based eating, walking, like upping your fitness, but not necessarily in an I need to be a gym rat sort of way, in a 30 to 60 minutes of walking each day, tapping into a mindfulness practice. Now, this conversation could go on for several days, because I'm so passionate about it. What's interesting, though, is so much of what I was reading wasn't anything that was crazy out of this world. In terms of like wellness trends, it was really about healthy living practices. And so I started I'd say little by little the plant based eating, I honestly, I changed overnight. And I will also say on the same note, you don't have to do that. I was just so I didn't know what the stage for diagnosis, diagnosis. If I was going to live or die for about four months, and my son was five, and he was my miracle baby. And I was in such a dark, scary place. That honestly I wanted to feel like I had a control of something because I felt like the cancer was controlling so much of my life. And so that's why this whole journey, at least the initial journey into wellness brought so much positivity in that day to day. And so I felt charged to find smoothies that were decent tasting that fueled my body with vegetables and some fruits. I embraced hot yoga, which by the way I had done before, but the reason I did it before was because I heard you burn 500 calories. Whereas my approach, then, post stage, you know, post the stage for cancer was I'm just gonna go and find a release. And that's when I actually listened to the yogi's who just told me to focus on my breathing. So I didn't think about cancer. I focused on breathing and it was wild. How differently I felt when I took a different approach. Doing something so very similar to what I had done in the past. But for different reasons.

Dr. Ashley Richardson  15:05  
You mentioned two things that I think we've touched on a lot in our previous podcasts. And that's control in release. I know Lindsay and I talk a lot to our patients about assuming some form of control, because with the cancer diagnosis, oftentimes patients feel that they have no control that there's nothing that they are in control of at the moment, whether it be their family, their job, their treatment course, and I spend a lot of time with him trying to get them to rework their mind around what they do have control over what they can be in control of. So just you touching on that topic, I think, is super important. And the same with release. Because a lot of the times, we will talk about what makes you happy, what, what is something that you wake up for each day, what gives you that release that outlet, and I always I actually just had this conversation with my patients today that sometimes I feel like a life coach, where we focus not even on breast cancer, you know, as a patient that was there for a year follow up. And she was worried she's put on weight throughout the pandemic, and her blood pressure was up. And we touched on her survivorship of breast cancer for a minute. And then we spent 15 minutes talking about subtle things that she could do everyday to work on her weight loss to work on getting her blood pressure better. And I said, you know, you don't become a CrossFit competitor overnight. Nobody expects you to, but get out start walking twice a week, then maybe three times a week. Those are all things that, you know, it sounds like you embraced throughout your journey.

Caryn Sullivan  16:29  
Yes, I absolutely did. And I will tell you, the fitness and the Clean Eating came so much easier to me. And maybe that was because I had more experience with it. I will tell you that the mindfulness component was the hardest thing for me. And even though there's all sorts of reasons maybe why that was in my case. But what's interesting is when you talk about little by little, when I started to dip my toe in and try it. But not just try it to sample it. Yes, I did sample but to really get in the headspace of, I am going to try this meditation or guided imagery, and see if it works. And if it doesn't work today, you know what, I'm going to come back tomorrow, or I'm going to come back in a few days. And try it again. Because you know, just like a kid, when we ask them to try broccoli, or a fruit or a vegetable that they don't want to try, they're never gonna like it on the first time. But after they've sampled it a few different times, they might find the right vegetable or fruit that works for them. And that's the way I feel about the mindfulness practices like there are many of them. And there may not be the first or second when you try. But that is a huge component that I think is incredibly helpful in terms of we're breast cancer survivors and patience. And whatever titles we're putting or heaviness or lightness we put towards it. One way that we can help ourselves is by trying to have a mindful practice. And it took me a few years to stick to something regularly, but I found it. And I even made it a part of our family lifestyle, which has now become such a near and dear part of my heart. So if you would let me share it with you, I would be so

Dr. Ashley Richardson  18:30  
honored. Oh, most definitely.

Caryn Sullivan  18:33  
So what we do in my family is something called the grateful game. Now, gratitude, as you both probably know, is really another form of mindfulness. And for on and off for years. If I was having a bad day, my best friend would say to me, like, stop. Like, I know you want to complain. But you're having a bad day. And that's okay, and you can have a bad day. But what what's something that makes you smile? What's something that you're grateful for? And so as I was embarking through my cancer journey, and then just the stress of life, I brought him a gratitude book, and I sat in bed with my son, and we tried doing it for a few weeks. But you know what? It was just kind of a lot. It was late at night, the light was on we needed the book. And so we made it work for us, which was we turned off the light we cuddled in bed, we talked about what we were grateful for, and why? Because at the time, he was a nine year old boy that was super competitive. We met it made it into a game to see who could come up with more ideas that we were great that they were grateful for in that day, and explain why. And what I didn't realize, Oh, thank you. What I didn't realize at the time was that this practice doing it most nights meant that during the day both he and I were looking And around and trying to notice the good that's around us. And so it became a habit. And you know, as he's gotten older, we don't necessarily cuddle in bed and chat about it like we do. But I carpool or I take him in drive into a lot of baseball practices. And so sometimes I'll just whip it up. But okay, let's talk about what happened at school today. What are you grateful for and why? And so it's made us both focus on the good. And by the way, most of the time, it's the little things that we focus on, because as you know, and as all these listeners, no, some days just aren't great. And it really might be that kombucha that I'm drinking, that puts a smile on my face. Or the fact that yes, I'm embarrassed to say, but there are some nights that I watch Days of Our Lives to put me to sleep. But it puts a smile on my face. When that is something that I do with my son, and on my podcast happiness through hardship, that is how I end most of my episodes, so that wherever we're talking about the hardships in life, we end up on a positive note.

Dr. Linsey Gold  21:10  
So touching upon that, if I were doing the math correctly, you were sort of embarking on your journey, maybe around 2013 ish. Does that sound right? 2000

Caryn Sullivan  21:26  
this stage journey? Yeah, exactly. Yeah, so

Dr. Linsey Gold  21:29  
that was really early in. You know, I'm gonna just call it the wellness explosion. So, um, did you have a hard time really finding information? And is that one of the things that allowed you to create? You know, what you've done now for millions of other people?

Caryn Sullivan  21:50  
Well, thank you. Yes, yes, yes. And yes, I created pretty wellness, because I felt like so many people needed to know, the information that I was, I wouldn't even say stumbling upon because I really was doing some research. And because I was in grad school, I did have some other sources that people would just Google and pop up on. However, as a mom that spent many years in corporate or before that before I was a mom, as a busy woman in life. Sometimes we just don't have time, or don't want to read things that are that heavy. And so my goal with it was to talk about to take this information about, we can call it holistic wellness. But when I say the word holistic, even now, sometimes people get a little bit woowoo, you're sitting on a mountaintop, with your legs crossed eating granola. And that's not what it's about. It's like a circle 360 degrees of wellness. And it comes from all different areas to help us be whole and healthy. And so I wanted to make it more mainstream. And yes, I think now there's a lot more out there, whether it's even just in the day to day of local restaurants and stores that sell various wellness products. But a lot of people it took a while for them to even acknowledge that. And so when I started pretty wellness in the writing and the creating content and doing events where I would speak about these topics, I wanted to do it in a way where people were taking small steps, because honestly, not everybody can do it overnight. Right? Most people don't have the fire to and even when you have the fire they don't. But if you take small steps, it begins becomes to be more of a habit. And if it becomes more of a habit and you see success, then you may want to do more of it. And in the long run, we all know if we take better care of ourselves physically and mentally, will help us heal from whatever we need to heal from in the world. You know, cancer or no cancer, there's a lot of stuff that's going on that causes stress. So taking care of yourself can really help with any of those instances. Well, that's

Dr. Ashley Richardson  24:11  
certainly also what I was going to say, especially given the current situation, you know, everybody can find it very easy to be weighed down by the bad right now, rather than find the good are things that we can embrace and be grateful for. And certainly medicine has transitioned more to health and wellness and encompassing the whole mind, body and spirits. So there's lots of factors that we bring to our practice, from a surgeon's perspective, from a physician's perspective, but also from a mom's perspective and a patient's perspective. And having all of those resources more at your fingertips in 20, approaching 2022 as opposed to back in 2013. It can make the experience more positive right from the start. Yes, can you tell us a little bit about your book I'm so interested.

Caryn Sullivan  24:59  
Well yeah. Thank you so much. And can I tell you one of the greatest compliments I got was when my oncologist told me that he read it. And he was taking parts of my book, and he was mentioning it to his patients. And my oncologist. He's a brilliant man. And I have the utmost respect for him. So the book is called happiness to hardship, which is also the name of my podcast. And it is a guide and journal for cancer survivors, their caregivers and friends during an initial diagnosis. So and when I say initial, I'm looking at, say, the first year of diagnosis, the book is a short read, because when I was first diagnosed, and the initial diagnosis was 2000, for my husband, I ran to Barnes and Noble. And every book we got was like, over 300 pages. And it was either full of dry information, and we were overwhelmed. Or it was somebody else's story, which is beautiful. It's their story. But it was not what I wanted to hear, because I was going through my own. And so I really was thoughtful about the book in that, yes, there's a story in each chapter, hopefully to connect with whoever's reading it. But there's also a ton of practical tips and resources. And then the second half of the book is a note taking guide and a journal. Because as you guys said, there's a ton of questions, which by the way, I have a few pages of questions as doctors in here. So you guys would approve. But where do you write you have all these questions? And where do you write it? So take my book, put it in your purse or in a bag and whip it open? And then you have a place to write right there in the book.

Dr. Ashley Richardson  26:46  
Excellent idea. I love Absolutely. And, you know, patients, their family members will always ask, What can I do for them, they're starting chemo, I want to get them a gift, I want them to feel that I'm thinking about them. So we love resources to be able to share with patients and especially their family members.

Caryn Sullivan  27:03  
Well, there is a post that I wrote, it was one of the very first posts that I actually wrote. And it's called 50, thoughtful gift ideas and gestures for a friend in need, where I talk about all this creativity, unique, or just usable gifts and gestures that somebody might want. And I included that in the book as well, because it's still goes, call it viral, or I get so many hits in a day. Because unfortunately, people are googling a lot, you know, gift for a friend with cancer, how can I help a friend going into surgery. And so I think, you know, you got to know your audience. So what works for me may not work for the next cancer patient. But hopefully with over 50 ideas, there's something there that will spark an idea that will help the caregiver or the friend who wants to be there for someone going through cancer.

Dr. Ashley Richardson  27:58  
I love the chapter in your book. Google is not my doctor, right? My staff got me the greatest gift ever. And it was a mug that says please do not confuse your Google search with my medical degree. I know right? So. So what is the gist of that Google is not my doctor.

Caryn Sullivan  28:22  
Well, that is truly saying that there's so much maddening and wrong information or even correct information that's scary on the internet. So if you're going to go there, go there delicately let a friend help you. Because the truth is we all are connected to our smartphones. So I know that people will want to do that. But I encourage them to let somebody else at least start the research. That way you don't stumble upon it yourself. And if you find information when you find information to go to your doctors and ask them about it, because they're the ones who have the expertise in the subject, and they're the ones that you have entrusted to help you get through your cancer journey.

Dr. Ashley Richardson  29:11  
I love the saying go there delicately. I'm totally going to steal that in the office. You shared a lot ton of information today and your story and journey has been very inspiring. For our listeners, how can they find you out on Google search?

Caryn Sullivan  29:28  
I love Instagram and I am at pretty wellness on all social media on Instagram. I'm there daily, I answer questions, I connect with people. So if anybody has any questions about this, definitely they can find me on Instagram, pretty wellness.com Or check out my podcast at happiness do hardship, the podcast wherever you find your podcasts.

Dr. Ashley Richardson  29:53  
Well thank you Karen so much for joining us today on the breast of everything and it's been a joy to have you and thank you for listening to the show. Have everything podcast I am your host, Dr. Ashley Richardson and Dr. Lindsay gold of comprehensive breast care. And as always, we want to hear from you. If you have a topic that you'd like us to talk about, we welcome your suggestions. You can send them to comp breast care.com that C OMPBREAST care.com.

Announcer  30:23  
You've been listening to the breast of everything podcast with your host and board certified breast surgeon, Dr. Ashley Richardson and Dr. Lindsay gold of comprehensive breast care. If you have a subject you would like the surgeons to discuss, please email your suggestions online at comp breast care.com. That's compbreastcare.com The doctors want to hear from you. The views thoughts and opinions shared in this podcast are intended for general education and informational purposes only and should not be substituted for medical advice, treatment or care from your physician or healthcare provider. Always consult your health care provider first.

Transcribed by https://otter.ai