. I am your host, Dr. Shubham Pant. As a star soccer player who never smoked, Taylor Bell Duck’s lung cancer diagnosis at the age of 21 came as a shock to her and her family. After undergoing surgery, Taylor reports that she has shown no evidence of disease for the past 10 years.

Today, she juggles a lot as a wife and Physician Outreach Manager with Vidant Health. She also recently graduated with a master’s degree in public administration. She continues to tell her story through her advocacy work and as part of 

, where she joins several leading patient organizations in the cancer community to provide support and resources. Taylor joins us alongside her mother, Nancy, and CancerCare social worker, Richard Dickens, to share her incredible journey. Taylor, welcome to the program.

Taylor, I’m going to start with you first. Just tell us a little bit about your cancer journey. How did it start? When was the first time, how did you discover you had cancer?

 Absolutely. As a child I was a soccer player, as you said, and my dream was to play Division I college soccer. And I got that opportunity and got to play at East Carolina University in North Carolina. And got there for preseason and everything was going great, but I was having trouble passing a fitness test.

 Yeah, I had numbness and tingling in my toes and then winded. And you have to be able to pass the test in order to play. And so usually on the first try a few people might not pass, but then as you go through the days of preseason, eventually everybody starts to pass, but for whatever reason I wasn’t able to pass a fitness test initially during preseason. And so after multiple weeks of trying and then ultimately an entire year of playing soccer but just not feeling quite right and they couldn’t find anything that was wrong with me, I made the really difficult decision to stop playing soccer. And I also had recurring pneumonia and bronchitis several times.

So in and out of the hospital or just the emergency room?

 Just the student health center where they gave me a Z-pak or a steroid and kind of sent me on my way. And so the thing that set us into the actual initial diagnosis stage was I thought my appendix was rupturing one Saturday evening and ended up in the emergency room.

It always happens on a Saturday, huh? Friday, Saturday, or Sunday.

 Right, always on Saturday. And so they did a CT scan of my abdomen to rule out my appendix, and the physician came in and they said, so your appendix looks fine, there’s no issues. But we’re just curious, are you aware that your lung is collapsed and that you have a 4 cm mass?

 And so shocked, as a 21-year-old to hear that kind of news.

Did you make the connection saying a mass could be cancer at that time?

 I think in the back of my mind, yes, but then I also felt like surely, I don’t have lung cancer because I’m 21-years-old, I’m a never-smoking, Division I college athlete, never been around second-hand smoke. So I think that’s initially what I was thinking was, well, maybe it’s just some weird kind of spot.

Nancy, when did you first hear about? Like did Taylor call you from the emergency room or when did you first hear about it?

 So my husband and I were in a Boy Scout camp with our youngest son, and Taylor was looking for an apartment with her sister and so that’s why they ended up at the emergency room together alone. So we got a telephone call from our oldest daughter probably about 11 that night saying that there was a spot on her lung.

 Um-hmm and in a tent. We started making arrangements to break down our tent and get home. But I think in the back of my mind I was concerned because we have a really strong family history of lung cancer. My mother had recently passed away, and I just was very concerned.

Taylor, tell me, what techniques do you think you could use to better advocate for yourself? Do you think that just for any 21-year-old who may go through this, you say listen to your body because at 21 you think you’re invincible but there’s definitely something was going on because you were not that way for that year.

 Right. I think that it’s important to advocate for yourself, and you know your body better than anyone. And so if you feel like something isn’t right, push until you have answers. There’s no reason somebody shouldn’t feel their toes or train as hard as I did and not be successful. I think what’s also important is to use your support team around you, and when they’re trying to advocate for you, to listen to them as well. There was several times where Mom spoke with my provider and said, please order an additional test. We have a strong family history. And they brushed her off, and I kind of was like, oh, I’ve got the crazy mom trying to tell the doctor how to practice medicine. But I think that when you have a support team that’s able to support you, you should let them.

I think of the same thing as I’ve become a dad. Now there’s nothing known as a crazy mom or dad. They’re just very, very concerned.

Taylor Shares Her Story on Navigating Cancer and Embracing a New Normal 

Nancy, when was the first time somebody actually said the word cancer to you and to Taylor?

 It was in the surgeon’s office when we went for the pre-surgical consult, and we didn’t know, and I said I know that we have a mass but we don’t know if it’s malignant or not. When will we find out? And he looked at his physician’s assistant and he looked back at me and he said I’m not sure where you’ve gotten your information from but there’s nothing benign about this tumor. And so that was when we realized that it was cancer. And I think the inconclusive part from the bronchoscopy was maybe them waiting for the surgeon to tell us maybe. Maybe it wasn’t as inconclusive, we just didn’t know yet.

And did you have any resources to help you at that time? What did you. At that time, the air goes out of the room, right?

Everybody just pauses and there are so many things going on and I don’t know, as a 21-year-old, did you have that realization in a way?

 Thankfully, I have two parents that are involved and educated, and so they were able to do some research and spoke with a lady at our church who had also had a similar diagnosis. And they got online and researched, and that’s how we ended up at Duke was from that connection and her advocating and Mom advocating that we wanted to get to the best place that we could to get my care. But utilizing advocacy organizations.

 And family friends, yeah, absolutely made a difference in my journey of my care.

Do you think there was any information you wish you would have known at diagnosis about hey, what is this cancer? What are the resources out there? Is there any other information you wish was out there at your diagnosis that you would have known which would have helped you in your cancer journey?

 I think what would probably have been most helpful is to feel comfortable, being able to ask questions when the conversations were probably a little bit over my head. I think you get, information just comes at you so fast that you kind of sit there and try to take it all in but it’s overwhelming. And you’re also in a state of shock and then you’re also in kind of a state of survival. And then on top of all of that, you don’t feel well. So I think any time, I kind of employed different things that I thought were helpful for me, including never going to an appointment alone.

That’s a very, very, that’s a great point.

 Right. Making sure that I had a place to keep kind of all of my records, and bills, and any type of communication that was given to me. Because everybody knows when you go into a doctor’s office, you get a discharge paper and it starts to pile up.

 Right. And so you might not have a chance to look at it right then, but you might need it down the road. I had a big tote bag and I just stuck everything in there, so when bills came, we stuck it in there; paperwork, stuck it in there. Another thing that I did was that because I was in college and I lived farther away from my healthcare facility, I asked for copies of my scans. So, if I ever happened to need to present in the emergency room or somewhere for some reason, making sure that I had that information available to me was something that was important to me.

That’s very, very impressive, Taylor for a 21-year-old to do that. I wouldn’t think. What do you think, Nancy, how did you help? Taylor is obviously very accomplished in maintaining. I don’t think I could have done at 21 what Taylor did or I could maybe not do it right now.

 One of the things that happened was that she was actually diagnosed or they found the mass on fall break. And she had been to the school student health services, and they had records and we needed them, and we needed them now. So we actually got in touch with, we couldn’t get anybody at student health because the campus was closed, so we got in touch with the police who got in touch with the chancellor who went and made them unlock student health to get us the records that weekend. So, right off the bat.

 And we knew, yeah, that we didn’t want to have to go through that again.

So I think the three points, I’ll make them again, the first one was that you should never go alone or as much as you can, you should go with somebody else because you’ve got a second set of ears and eyes to go through what the doctor has said, to kind of absorb that information to talk about it, and great record-keeping.

Always keep great record-keeping and keep it all together and bring it up any time, and if you have to go to the EC or something then you can always bring it up.

Strategies for Navigating A Cancer Journey 

Tell me this, Nancy. As a mom, how is it watching Taylor take charge of her journey? I know you had sons and daughters and everything. As a mom and I’m a dad and like I said, if my 21-year-old called, I think I would fall apart. But how was it for you to see Taylor? Did you see her grow up overnight and get more? What was the change like in Taylor?

 She got sick to the point that she had to go into the hospital in a wheelchair. And for me, that was my big emotional moment. She can outrun me, she can out-everything me.

She was like so soccer player, just out there.

 I’m like the klutz of the family and so to actually be able to walk faster than her and to have to wait for her to be able to join, to walk up to us and then to actually need to get a wheelchair to get her into the hospital, that took my breath away.

We’ve talked about the teenage years are obviously not very pleasant. But do you think you made a connection, this helped make the deeper connection with Taylor? I know that’s not a great way to make that connection. But did you come together more as a family with that?

 We really did. And our faith is very important to us, and I think we really learned to rely on our faith, lean on it, lean into it. It was a very scary time, and I wanted her not to get fear from me. I wanted her to get survival and advocacy and to not pull fear from anything I was feeling.

That’s amazing, Nancy. So how were you able to empower her as an advocate, just as an advocate for herself? Did you have discussions with her saying, Taylor, this is our discussion of saying how will you go forward with this and how you can take care of your own healthcare?

 Right. And she was at that point at 21 where she was already independent but not completely independent. And so, for me, the hardest thing was letting her go back to college afterwards because we had I guess grown closer. And she’s always been very independent, but she was a little bit dependent on us. And then to go back to college, to see her drive out of that driveway and head back and knowing that she had to walk to classes, and carry books, and all of that stuff, we felt very close but it was very emotional to see her rejoin the world. I think it was said very eloquently. She used to be all about soccer, and we all kind of wondered what she would do when she wasn’t playing soccer. But she did, she found her voice.

So, Taylor, tell me this. So how was it going back and rejoining? I think Nancy put it mildly. I would just stalk my kids, that’s what I would do. What’s going on here? What’s going on there? Tell us about your just rejoining college. It’s such a big deal. And so what were the emotions that ran through your head and how did you advocate for yourself, help yourself rejoin college?

 Yeah, so that was probably the most difficult for me transition wise. I probably wasn’t quite ready to go back, but I didn’t have much of a choice because health insurance wise, I had to be a full-time student in order to keep my health insurance. So what I did was tried to utilize my support system as best I could, so my sorority sisters and my boyfriend at the time, who’s now my husband.

 So just being comfortable and okay to ask for help. So I think that sometimes can be very difficult for patients because you don’t want to feel helpless. But there are times where you literally.

 You can’t survive without it, right. So I kind of worked with the sorority to coordinate. I lived in the sorority house at the time, so I got sisters to help coordinate me in terms of when to pick me up from class and drop me off, so that I didn’t have to walk as far. And then carrying my books physically was not possible, and so I worked with my professors to be able to not bring my book to class and that sort of thing. So just finding ways to adapt was really important for me. Initially, I think people kind of choose to either be public about their diagnosis or to be very private. And I don’t think that there’s a right or a wrong way. I think that it’s up to the patient. I personally have chosen a path that is very public, outspoken about my diagnosis. And I believe that it’s really important to speak up because I am one of the few that survives lung cancer. And so I 1) want to bring hope to people to let them know that they don’t have to be a statistic and that there is hope and possibility to survive. But 2) I think the stigma that’s associated with lung cancer and that people believe that.

 Only smokers get this disease. And so I think that any time I have the opportunity to bring patients to resources or to bring awareness, that it’s really a calling for me to speak up.

That’s amazing. You just be a really proud mom now. You lived through the teenage years of my daughter’s grow up like Taylor and they grow into impressive young women. So tell me this. One was around your family and friends. What other places did you go for your information to go through a cancer journey for help? Did you go on the Internet? Did you go on specific? What were the specific resources that you used?

 I got involved with the local organization that was a lung cancer foundation, and they connected me to resources, the latest research and trials available. And then as I got more comfortable with that, I branched out even farther and got involved with larger national advocacy organizations. That’s kind of how this opportunity has come available and given me the opportunity to speak, to partner with organizations like Merck and 

 to bring patients the resources that they need. It’s a central place, a website where patients can go to learn about emotional health, communication, and then nutrition, and help them really make a plan for their cancer diagnosis.

I think you alluded to it, but tell me a little bit in detail about 

. How does that help the patient from somebody like you, let’s say? They’re young, they got a diagnosis. How can 

 was created by Merck and other leading cancer advocacy organizations to provide a website that focuses on three fundamental pillars I think that all patients go through and deal with — so communication not only with your healthcare team but your family and friends, emotional health and well-being, and then nutrition. And so I think oftentimes patients have it in their mind, like we know all those things are important, but when you’re kind of overwhelmed with the diagnosis of cancer, it can sometimes be hard to find a resource that addresses all of those things.

In a more holistical fashion, everything together in one place.

 Yeah, absolutely. So yourcancergameplan.com is a website where patients can go put together a plan, find recipes, helpful tips, suggestions and videos on communication, emotional health and well-being. So it’s just a place that kind of is one portal where people can go to get information.

Do you use it yourself just running through it?

 Yes. Yeah, and some of the recipes are fabulous.

 So there’s a macaroni and cheese muffin.

Macaroni and cheese muffin. Now I’m hungry.

 But it’s healthy for you. It’s not bad. There’s smoothie recipes, just lots of good things. And it’s nice to be able to go somewhere where you can get good, solid information.

Sources of Support for Patients 

Nancy, tell me, as a mother and now you’re a caregiver for Taylor, what was the transition like? Tell us a little bit about this new normal that you had in your life.

 Um-hmm. She’s always been very independent. So it was a huge change for her, and I think it scared her. I was kind of worried that she wouldn’t let us help or wouldn’t want the help.

Like push you away a little bit and try to be more independent.

 But she really needed it. It’s no secret that lung surgery is no walk in the park, and she needed a lot of support doing basic things like getting to the bathroom. Originally right after surgery, the chest tube and all the materials that have to go with you to walk, we had to get her up to walk in the halls. She had never experienced pain at that level. She had never had a child. She had never had any surgery.

 I think she probably thought she was close to death. And so walking up and down the hall carrying the IV pole, carrying the pump, and working through the pain, it was heartbreaking, it really was. But we were all there as cheerleaders. We have a large family, and so we would rotate in, and somebody that doesn’t have a large family, friends are always wanting to know what can we do to help. And we did use them as well a lot, mainly for food preparation. If you don’t have a large family, having people in the hospital to walk in the hall, and to carry all that equipment and stuff, and to push through that pain, and to continue to be basically cheerleaders.

Taylor, what do you think, when was the first time when you felt, saying I do need help? So, for a lot of our patients who are, they’re like, well, I can be strong through this and everything. But the thought is that however strong you may be, it’s okay to reach out for help. So when in your cancer journey, when did you feel like I’m going to reach out for help for this?

 I think a defining moment for me was the first appointment at the surgeon’s office. Dad parked in the parking deck and we were just going to walk over to the physician’s office. And I got about halfway across the cross-walk and realized there is no way that I can make it. And so that was kind of like a defining moment for me to say like, I’m really sick. And so I had to ask for a wheelchair. So it was the first kind of ask for help which was difficult. And then after the surgery, I didn’t have a choice but to ask for help. I mean, I couldn’t sit up alone. You just learn to ask for it and be gracious, and thankfully I had a support system and family and friends that were as awesome as they were.

And so how many brothers and sisters do you have?

 Yeah. I have an older sister and three younger brothers, so my sister was a huge support person for me, particularly because we’re very close. We were born two years apart to the day, so she was a good person for me to kind of lean on and be able to talk to. Obviously, she’s very close with my parents as well so she was able to relay some stuff to my parents that I necessarily either didn’t want to talk or it was easier to talk to her sometimes. And my three younger brothers are younger, so they were still in school at home, and we thankfully had friends, and family, and my grandmother who was able to care for them, so that my parents could be with me while I was in the hospital.

It’s amazing, so everybody came through and everybody.

At that time at 21, was there a time when you took a pause after, Taylor? Adrenalin is pumping, everything, you’re saying, okay, let’s get a resection, let’s get. When was a time when you took a pause and said, this is different, this is not normal? What did you learn about yourself, and Taylor, and your older daughter about coming together as a family?

 Well, I learned that we were really strong. I knew we were strong, but I don’t think I realized exactly how strong. I realized that we had a unique story. There was nobody that we were aware of that had walked this walk, and so I think from the very beginning we realized that we had a message to give that this is not a normal experience.

And you could help other people along the way. So tell me, you’re a social worker, Nancy, before?

And how did that help you, your training help you take care of Taylor?

 Because of my career, I’ve seen lots of people go through a lot of medical issues and other types of hard times. And so it gave me great hope because I knew that we could get through this. It helped me know. I knew how to network and I knew a little bit about medicine, so I wasn’t coming at it from a totally, I wasn’t from a total different area. I had worked as a medical social worker in dialysis and in some other areas, and it helped me a lot in terms of vocabulary and just familiarity. And I wasn’t afraid of a hospital.

So it’s not like all just a maze to you.

You kind of could understand it a little bit.

The Role of a Caregiver 

probably received a lot of advice from friends, family members. What do you think was some of the best advice that you received and what you could tell other caregivers to use that they’re caring for a child or somebody young with cancer?

 For us, because we had a strong faith and a strong relationship with our church, that was something that we could really lean into. And I’m aware that not everybody has that, but I guess I would tell young families that if you have a support system, it’s kind of like pay it forward a little bit because our church was an incredible resource for us, not just in their prayers but their on-the-feet action.

Doing work for you and helping you along the journey.

 Um-hmm. And the food was a huge issue. When you have five children.

 Right, right, trying to make sure that meals were prepared and nutrition is very important. So having that support system in place.

Do you have any advice? You went through this when Taylor was young. Do you have any advice for caregivers in similar situations? Let’s say somebody else who is ..... at school, or college, or something, what kind of advice would you give to caregivers when their kid calls from an emergency center and says I have a mass? What are the learning points that you’ve, and we’ve touched on these before, but just together, what were some of the learning points that you used?

 I think the main one is to ask all the questions that you have, continue to politely push. We always taught our children to respectfully question authority, and I think that’s a big part is that you’ve got to find a way to ask the questions that you want. And, if you don’t understand, to say, to be able to say that was way over my head, do you mind saying it again a little bit simpler?

I think that’s a great point. So, Taylor, tell me, how important is your self education and self advocacy in the cancer journey? How important do you think it is for you? How important do you think it is for other patients going through this?

 Oh, incredibly important. So I think that knowledge is power, and so the more educated you can make yourself about what you’re going through, and your support team about what you’re going through, the better off you’re going to be.

Wow, Nancy, you must be really proud of Taylor.

I think she’s really ..... Taylor, what else did you, resources wise, did you think about? Have you changed anything after your cancer as far as nutrition is concerned, exercise is concerned? Have you changed anything since you got diagnosed?

 So, obviously, I’ll never be a Division I college athlete again, and that’s okay. It’s been interesting to kind of find a new normal in terms of fitness for me because I used to work out a lot and really hard, and I can’t do that anymore. I still am very active and have found things that work for me. And so I’m learning to play golf. I started a running group. I love running.

5:30 in the morning, okay, I’m not joining that group.

 I like to be on the water. But, overall, I think I just make better health decisions in general. I was always health conscious, just because of being a Division I college athlete, you don’t have much of a choice. But just trying to make sure that I stay active, even if it’s just walking or taking the stairs one time, but just finding things that I know will make my life better at the end of the day.

So the running club, is it like a 5K marathon running club or is it something which other people can .....?

 So we run for an hour every morning, and it’s like a run-walk matrix. It’s in my neighborhood, and I wanted to start it for people that were not fit because I think that’s one of the most difficult things for people is they’re intimidated to walk into a gym because they’re out of shape or to get on the treadmill because it’s scary. And a lot of running clubs are people that are running 6-minute miles. And they don’t want to go to that because clearly they’re not running a 6-minute mile. And so this club was really for the people that were extremely out of shape. So we started initially where we did a 4-minute warm-up where we just walked, and then we ran for a minute, and then we walked for a minute, and then we ran for a minute.

 Yes, and so we’ve worked up and now we’re running for about 18 minutes and then walking for a minute. And then we go back to 18 minutes and then a minute.

That’s very impressive. Maybe I should move to North Carolina and do it out of shape and start running like two minutes and then walking like 10 minutes. But tell me this, Taylor, what do you think is the most important message you have for patients, caregivers who are experiencing a cancer diagnosis, especially young adults who get diagnosed with cancer? What is the most important message you have?

 I think to educate yourself as best you can about what you’re going through and to be an advocate for yourself. So the healthcare system is complex.

 Yeah, that’s an understatement. There are more and more people being diagnosed with cancer, and it is important for you to be knowledgeable about your disease and to be able to ask questions and to advocate for yourself. And if something doesn’t feel right, speak up.

So go ahead. So what you’re saying is and keep your records with you. Always keep a great record-keeping and everything with you.

 Yep. So keep your records, never go to an appointment alone, find ways to communicate with your friends and family because oftentimes..

 Yeah, ask for help. I think the communication is key because friends and family sometimes don’t know like I should ring it up? Should I not ring it up? What should I say?

 And so I think if you are comfortable kind of being open and honest about how much you want to discuss or how much you don’t want to discuss, so that your friends and family know kind of what you want.

I think that’s a really important point because sometimes people don’t want to talk about it and they’re like, they don’t want to offend you ..... be outright with their diagnosis saying, hey, we both know I have lung cancer and we can talk about it.

Health & Wellness 

Welcome to our next segment. I’m very happy to introduce Richard Dickens, MS, LCSW-R who is a social worker. Richard, tell us, you do a lot of other things. So tell us what you do.

 for 22 years. It’s a wonderful organization. I came there as an oncology social worker. It was a career change for me in midlife, and over the years I developed many programs, as well as now my title is Director of Client Advocacy. So I was responsible for and very much involved in bringing the voice of, we call our people clients who come to CancerCare because we work with patients, caregivers, and bereaved and to more the national debate with pharmaceutical companies, with stakeholders, with government and things like that, bringing the voice of the patient.

That’s amazing. And you told me also that you are yourself a cancer survivor.

 I am. I was in the midst of a career change. I was a marathon runner, and then I got diagnosed at 37 with non-Hodgkin lymphoma. And I put graduate school off for a year and eventually did finish and was hired at Cancer

 where I originally came as a patient. And I’ve been there for 22 years.

Taylor, tell me this, you’ve also. Richard out here was a marathon runner, and you were a college athlete. I try to do a 1K on and off, so I guess I’m in the same category as you guys. But tell me about how was it for you after your diagnosis. You were a college athlete, you were into soccer. I know you had to kind of hang up your cleats. But when was it that you realized that this is not something that you can do and how did you change your life around after that?

 In the initial diagnosis and treatment, you kind of go through a state of shock and then survival mode. And so you don’t have really a whole lot of time to process what’s kind of happening to you or for me it didn’t. And so I guess when I realized I kind of had a new normal, a new life was at my three-month follow up, all my girlfriends were on spring break and I was sitting in this physician’s office sulking because I was so upset that this had happened to me. And that’s kind of when my physician had a true heart to heart with me and said, Taylor, this disease affects way more people than you could imagine and it has a terrible stigma, and it’s very underfunded, and you have an opportunity to use your voice to speak. And so at that point, I kind of made it a goal of mine to really try to speak up any time I had the opportunity and then also just realize that I had a new different life than what I had before. And it wasn’t worse, it just was different.

 Emotionally and physically. And physically I think was a big challenge for me just because I was in great shape, then I got to the point where I was not in great shape. And so there was little things along the way that I used, tips to kind of help me get back into shape. And one of the things I think that kind of kick started me was my physician and PA challenged me to a 5K.

Something I will now challenge my patients to do ..... [laughter]

 And so the 5K was actually to support lung cancer research. So I thought what a great cause. It will be a year after my diagnosis. We’ll make it work. And so I trained pretty hard for that 5K race.

After your surgery, after part of your lung had been taken out.

 And so they ran the race with me. They were significantly faster. So the cool part was is that they finished way before me, but they turned back around and ran back to where I was, and then we all finished the race together which I thought was really, really cool. It was definitely awesome to see that kind of support from my healthcare team. And it really kind of put me in gear to continue to work on my fitness and be okay with the fact that I’ll probably never run a 7-minute mile again, but that’s okay as long as I get out and I’m active.

So are you still active? Do you get out now?

Tell us a little bit about, for people like me who are not very athletically inclined, what all can we do? What are you doing right now?

 Absolutely. So I think that if you can find something that you semi enjoy, it’s probably better than doing something.

 Yeah, it’s better than doing something that you hate. I always try to find things that I enjoy to do that keep me active. I’m learning to play golf, but I make it a point to walk the course as opposed

 Not ride the cart. And so that’s one of the things that I, small tip or trick that I think is helpful. So it’s good to play golf. Even if you are riding the cart, you’re at least out being active. But I think any time you can take an incremental step to do just a little bit more is better. So I have a push cart and I walk the course. It’s pretty good exercise if you’ve never done it.

A New Normal 

Richard, tell me, you work with a lot of patients, a lot of caregivers. Tell us a little bit about this Mind-Body-Spirit. Where does it come? How do we do these workshops for patients?

 Sure, and I would back up a little bit in terms of that Mind-Body-Spirit is a tool, and we’ll call them tools sometimes when you teach people new techniques. But before, you’d almost teach that to them and what Taylor said too is so indicative of almost all patients is that period of being in shock in the beginning. That could go on for weeks or months. And, as a young patient once said, sometimes there’s a healthy dose of denial about the emotional impact. But, at some point, too, in terms of dealing with confronting the emotional impact of cancer for caregivers and patients, is you’d always start out, as a social worker, with helping them identify how have they gotten through other challenges in life. And almost everybody does, even teenagers by that time have had some setbacks or some challenges. People don’t often notice those or remember them, identify them as tools, but they really are - prayer, exercise, music, talking to friends. And then after that, those are innate tools they’ve learned, then you could introduce them to other things like meditation, imagery, visualization. I also do drumming as vibration therapy which is very popular.

Like ..... hit the drums like a rock star.

 They can but not as a rock star who’s excited, usually as a cancer patient who is really ticked off.

Tell me. That’s very interesting. So tell me a little bit about imagery. What is that entail. And the mindfulness, these are kind of words, but what does it mean? What do you train them to do? When you say imagery, how do you talk to patients about that?

 Sure, and that’s a great question. They all fall under the rubric of integrative medicine in some areas where basically it is. Basically, there is many different techniques, meditation probably the most popular. Most studied right now in America is mindfulness which uses, some people have called it a 2-point meditation. It uses the breath as a point of focus and then when the mind wanders and you’re not focusing on the breath which the mind is going to do, then a non-judgmental awareness where you observe why did the mind wander, what is the mind thinking. If it’s a pain in the back or something like that, patients oftentimes can either think, oh, my cancer is back or something has gone wrong or they could think the mind-body. They could blame themselves and say I shouldn’t have lifted that box. I shouldn’t have gone for such a long run. So mindfulness kind of just helps people focus on what’s happening at that time. Visualization, I like to break it down into almost three different segments. But one of them is a very practical. When people are in treatment, chemotherapy, radiation, they could build up a profound aversion to just walking into a cancer center, the smells and things.

Did that happen to you, Taylor? Did that happen to you when you were walking in for your next scan or something, did that ever happen to you that your heart starts going fast and you’re like, oh my god, your palms are getting sweaty?

 Yeah. So it wasn’t actually walking in, I always had anxiety a little bit a few days before my scan. But, actually, I honestly felt an overwhelming peace and calmness when I walked in. And so I think every patient kind of handles it differently. Some people, it’s right as they’re sliding into that machine, some it’s days before. But I think I just had to be knowledgeable and understand that I was going to have that worry and the fear. Make sure I communicate with my loved ones that I might be a little bit on edge and this is why. But it took some time to truly understand kind of why I was feeling those feelings and ways to adapt and overcome them.

And how do you use, so you were talking about imagery. How do you use that with patients to help them adapt?

 Well if I worked with somebody like Taylor I would say, you’re already doing visualization. It’s just calling it a different word, but she was already using that technique, and that’s uncommon among athletes, definitely. But it would be, in that case for that type creative visualization would be really whether it’s 90 seconds or whether it’s a half an hour, you’d be walking the patient through the day and visualizing it the way you want to visualize it. What are you wearing? What’s the day like? It’s not necessarily going to turn out just like that, but you’re going to give them a positive view going into it before they actually go down to the hospital or treatment center or whatever it is that they’re anxious about.

Then there’s other ways of creative visual [stumbled] visualization or other visualization methods of where you take them to a safe place, whether it’s a beach, an ocean, or things like that, a path, and you just bring them to a calm place where they have control and where they could, however people individually deal with their cancer as a battle, a journey, a friend, whatever it is. Because you find ways to use those innate parts of yourself to kind of help you address and open up the healing ways within ourselves, and/or have fun with it and find ways of seeing yourself getting rid of the cancer, throwing it out of your body. So it’s kind of, it would be a little like some really strange fun videogames but not usually that violent.

But do you sit down with the patients and do you talk to them and say, okay, you visualize like mind; how long does it take to, in your experience, patients understand mindfulness or they can practice mindfulness. It’s not that easy to turn off your mind and go, okay, I’m just going to breathe, right? I mean there is a certain amount of rigor that goes into it to try to get to the point of meditation or mindfulness or that peace. How long do you think normally, in your experience, when you’re talking to patients and everything, how long do you think it takes them to achieve that state of mindfulness?

 A great question and I do a lot of presentations on mindfulness, based again under stress management and that comes up. Am I doing it right, how long will I have to do this till I get it right? And I always say, if you do it once, enjoy the one time. And even people who do it for years and years, Buddhist Monks and such, they still have wandering monkey mind. Nobody ever is perfect at that. So a lot of times, again, the suffering, mental suffering and physical suffering, is we blame ourselves for not getting it right. And I always start out with a three (3) breath exercise for people and then that could be expanded into mindfulness. But if you do it once, enjoy it. If it resonates and you continue to do it, then start, then we can work even closer into, how do you do it right that’s working for you?

Anything you think that what Taylor talked about, anything that she’s already used, some of the things that she’s already used to help cancer journey? What would you do if Taylor came to you let’s say when she just got diagnosed, after that, and had surgery and she’s trying to get better, what techniques would you use with a young adult to help them through it?

 And I do a lot with young adults definitely, and Taylor is a perfect person to work with because she has all the skills there. First of all, the best breathers in the world are singers, athletes, and people who play wind instruments. And our life, the 20% of our intake of our breath is oxygen. And oxygen is so important. So when I do those three breath exercises, ironically sometimes it’s the lung cancer patients who will come up afterwards and say, “I couldn’t do that,” and as I say to them to bring in some humor, you are doing that or you wouldn’t have gotten here today.” It is, how do we calm the mind and heal the body, and it is the breath. And when we’re in a state of constant crisis, we’re living in that fight and flight syndrome of these shallow breaths. So Taylor already knows how to do that. She’s just got to find ways, and she obviously did, of doing it with less lung capacity. So you’d start where people are, other people who really don’t know anything about it, it would be introducing them a little more. But going back to what you said, I always tell people, when they see me after they are presented they’ll say right away, “I didn’t,” or, “I’m not doing it,” or they’ll apologize. And I say, “Did you do it once?” And they say, “Yes.” Enjoy that.

A Healthy Outlook: Mind-Body-Spirit

Tell me about just mentally; you know we talked about this a little bit. But spiritually, did you change when you went through the journey; just mentally/spiritually, did you use that to kind of help you in your cancer journey?

 Yes, and my mom touched on this a little bit, that we come from a family of very strong faith. And so I really leaned into that and so thankful for that upbringing because I can’t imagine going through a diagnosis without it. And so I think if anything it strengthened my faith, and initially right after surgery recovery, getting back into the new normal, when that first scan came up I was a wreck. And it, anxiety is interesting because some people have it very severely, some people don’t. I’ve never been a person that’s been very anxious and so it was a new thing for me to kind of have to deal with. And so I leaned in to my faith and just kind of had a pow-wow with myself and the good Lord and just said, you know, you are in control and worrying about it is not going to do anything but just make me miserable.

And so over time as those scans have gotten farther away, my anxiety has lessened. But at the end of the day I just kind of have to realize that I’ve been given a beautiful life and every day is a blessing, and live it to the fullest. And when my time comes, it’s my time and I can’t control that. And so learning and accepting that has been a challenge, but definitely feel like I’ve gotten better over time.

You’re sure you’re only 31, Taylor? I mean you have the wisdom of a Buddhist Monk with you. But tell me Richard, just starting with stressors, you know, patients and families go through so much stressors. So how do you help them get over them? Are there some stressors you think are much worse like do you think patients are, you know when you’ve dealt with patient and caregivers, is it more stressful going while they’re going through therapy, or maybe once they’ve finished their therapy, once the adrenaline is gon, you end up fight mode, and then it’s gone, and then it’s worse? So where do you think are the stressor or the pressure points?

 Well, and again, that’s a great question too because as I use what my colleague Ellen Sonnet says all the time, and she’s our chief strategy and policy expert, if you’ve met one cancer patient, you’ve met one cancer patient. They’re all different. So there are different ways and different times that people go through that. And sometimes very rarely do people not even go through any of that. But in terms of communication and stress a lot of times, most people have some kind of network already. And if they’re lucky, and there are a lot of people with a big family friend network, is what I would say, and it was one of my colleagues had developed this some years ago, it’s an acronym, FDR — is you could really identify your friends, those who are feelers, those who are really people you could talk to and listen well, and those are the people you would call when you may be feeling, being distressed or anxious or such.

Then there’s doers, the “D”, and those are people who maybe don’t feel as comfortable talking, but they love to come over and help clean the house or bring you a dinner or take you to treatment. And then there’s the “R”, and I would call those researchers. And those are the people again who are really great on the computer and they know the good stuff from the bad stuff, and they’re the ones that could really do the background work in terms of .... and Taylor’s talked about this well in terms of education and resources and clinical trials and things like that.

For caregivers though there are some wonderful tools out there. When you have a big network, caregivers too get overwhelmed with well meaning people calling every day saying, “How did the scan go? And, what are you doing?” And patients and caregivers say, “I’m so tired taking care of the people that care about us.” But these programs really help identify and say, “We can use a meal tonight.” “We need transportation to treatment.” “I need to have somebody take me out to lunch.” And also, the medical team.

 And again Taylor and Nancy have both spoken about this as the medical team isn’t just the oncologist, there’s a whole team there and building relationships with each individual is a great support network.

So you’re again, Feelers, Doers, and Researchers — FDR. I think that’s an amazing acronym. So, Taylor, you had a lot of feelers, doers, and researchers?

 Thankfully, yes. I do want to touch on what he said about utilizing the medical team. I think so often people just think the physician and the nurse or the physician and the PA, there are so many people built into the oncology system that can help you. You know, lay navigators, nurse navigators, social workers, clinical trials nurses. You just have to be confident and comfortable and willing to ask for that help. And there’s incredible resources available.

So ask for help and there’s a village out there which will help you go get through your diagnosis and get through your treatment and afterwards.

Forming Your Support Team 

Tell me Taylor, you know when you get a cancer diagnosis you’ve got to have a lot of people around you to help you through the cancer diagnosis. Just tell me what impact did your support network have on your cancer journey.

 Well a huge, huge impact. So you know I think something that was really unique for me was that my friends and family still tried to do things that they knew were important to me or things that I loved. So one thing that happened was is that everybody knows that I love a type of chip.

 Cool Ranch. And, in moderation. But they would, I actually left the hospital with 17 bags of Blue Doritos because everybody, they didn’t talk or know that they were doing that, but everybody that came to visit brought that as kind of a gift. Another thing that I think was really unique is that my mom found somebody in the hospital that was offering a ministry basically to come and wash my hair. And so I had really long platinum blonde hair and it was like a bird’s nest. And so it was just matted from not being able to get up and walk and brush it. And so this man came to bedside and washed my hair for me. And that just was such a blessing for me because it made me feel better. And something as small as that that somebody in my family thought would be helpful for me was such a gift and a blessing. So I think finding small things like that that seemed like not really a big deal but really showed the patient that they care, that was important for me.

And then your sister was very important to your support network, right? So what was your kind of conversation with her? How did she help you, get you through, not that I want you to choose who’s your favorite, brother or sister necessarily?

But how did she help you, you know, walk you through your, you know, help you, support you through your cancer journey.

 Yeah. So we call her my empathy buddy. So any time I was feeling down, she felt down with me. So if I was having a bad day, she’d get in the bed with me and have a bad with me. And she had done a lot of research about patients that are going through this and one of the things that she had found was that oftentimes patients can feel very isolated and alone. And so she just made it a point to make sure that at no point in time did I ever feel alone. And so that was really incredible.

Is that, Richard, is that a normal term? What do you use? And tell me about how important is it to bring to bring the support team like this?

 Yeah, and Taylor has a lot of great tools already and empathy buddy is something I’m going to use in the future when I work with people. Building tools goes back to, or supports, goes back to communication I’m going to say. And communication almost always starts in the home. And recognizing that a healthy dose of denial is not inappropriate for many people. And there’s a time that then the emotional ramifications of what they’re going through comes to the surface. Is as a social worker a lot of times we identify right away that although one person gets cancer, their whole social and family and work network is affected by it to varying degrees?

So to the degree, and one that people always have control over who they share it with and who they don’t, and in multicultural societies I’m very sensitive to the fact that some people come from societies that you don’t share it. And there’s other reasons for not. But all the literature, all the studies for the most part suggest that opening it up, starting with your family, even young children age appropriate, five and six-year olds don’t need to know it’s cancer, but they need to know that mom or dad or sister is sick. And within that you also open the opportunity for people to be honest and ask questions, and then that extends beyond definitely with your healthcare team. You could role model that with the healthcare team. So building communication helps you really build a solid network.

So you have support groups right there, circles. First there’s your friends and family, immediate friends and family. So what other support groups can be there for patients to use, Richard? What do you help them with? Like outside the immediate friends and family, what other, you know? Do you tell them to engage with their healthcare provider, what other, you know, what do you tell your patients?

 Sure, very important. Organizations like Cancer

, and there’s a number of them out there, either have patient’s navigators or nurses or social workers are often doing patient navigating. We run online face-to-face and telephone groups and many organizations do. Especially in this day and age, one, that cancer’s become a chronic illness, so that people are often very busy, and in my patient groups the biggest complaint in the last five years has been, “Everybody I talk to doesn’t believe I have cancer because I look so normal.” So groups really give them the place to talk to people who actually understand what they’re going through.

I don’t care how loving their family is, their family can’t completely understand what it’s like to be fatigued. Even in a general patient group you all, I always say when people say well they have a worse cancer, they have a harder cancer or their treatment’s worse, I say, you all heard the words, “You have cancer,” and those three words are going to change your life and your perception on life from mortality to health to opportunities and all of those things. And across that, that’s what’s helpful.

And sometimes people don’t want to get into a group, they don’t want to hear a lot of other stories, but they want to talk to somebody else who has a similar cancer and how did they get through it.

Taylor, did you ever reach out, or would you recommend then now going through your experience, if they did not reach out, would you recommend patients to now reach out to groups?

 Yes. So I did try to connect with people, but unfortunately there wasn’t a whole lot of people my age that had been through what I’ve been through. So every time I connected it was always with somebody a little bit older. And I felt a lot of my issues were related to.....

 Right. and not necessarily unique to just my diagnosis. So I did try to connect. But I absolutely think that it’s important that patients seek out resources and education. And that’s why you know 

 is such a great kind of portal is because it gives tips of how to communicate, when to communicate, and put patients in touch with other resources that might help them along the way.

So that would be other patients, other support groups, just other online resources?

 Could I say, too, just to build on what Taylor said, we cover all cancers and all ages, and cancer still is overwhelmingly a disease of older age, over 60. And as Taylor said, and being on the edge of young adults, isolation is one of the hardest things that any of them deal with because their peers, it’s very hard to find peers who understand or go through it or even dealing with the healthcare system. So it’s a bigger issue.

A Support Network Is Key

Taylor, you went through as a patient. What advice would you give maybe caregivers you know as a patient that you know this is the tools you can use to help your young adults cope with this better, if you had to give some advice to the caregivers for these young adults?

 Yeah, I think so understanding just exactly what the patient wants and needs and that stems back to communication. So for me personally, we had very open lines of communication. So no question was not okay. I mean you could ask anything and everything your wanted to, and we answered it as best as we could.

However, I know that there are some patients and families that don’t have that kind of open communication. So I think just having a general understanding of when you want to talk about it, where you want to talk about, what you will and will not talk about is really, really important. Because I often think times caregivers are like, “Okay should I ask? Should I not ask?” Like, “What do I do?” And so I think if you can kind lay out those boundaries, it’s helpful for everyone because this diagnosis can consume you if you let it. And oftentimes I, at times I felt like you know all I ever did was talk about lung cancer. And somebody said to me it was a really great piece of advice. They said, “You know, Taylor Bell will always be a lung cancer survivor, but she doesn’t have to let lung cancer define her life.” And it was a great piece of advice for me. It will always be a part of my life, but it doesn’t have to be my life.

So what do you think, Richard, what do you talk to about caregivers about helping out, helping young adults, or anybody with cancer deal with the diagnosis? What kind of support things; you talked about — mindfulness and everything – for the patient? What about for the caregiver?

 Yeah, that’s another good question. What I’m finding over the years of being a social worker is caregivers often don’t share their own concerns with the patient. They’re really worried about the patient and in some cases they never do another case, as it’s literally years later after they know the patient’s fine. But they’re going through an awful lot themselves. They’re struggling to find people to connect to. Our caregiver groups sometimes are harder to populate simply because caregivers are so overwhelmed. They’re taking over the work of the patient oftentimes. They’re working double time at work to keep the financial income coming.

And young adults, it’s even more unique in that if they are in a relationship, they’re at the beginning of their career lives. They’re talking about children. They’re talking about moving into a house or an apartment. They’re talking about a lot of things that are forward thinking. And caregivers a lot of times don’t want to acknowledge their real, their full concerns. And the full concerns sometimes are, “What’s my life going to be like if my spouse can’t have kids? What’s my life going to be like if they’re chronically ill? What’s my life going to be like if they pass away?” And they don’t want to share that with patients. And so it’s more and more studies since in the last 22 years when I was diagnosed before that. And as a social worker there wasn’t a lot of research on caregivers and the stress. There’s been a lot more.

And the best story that I have was an older couple and he had lung cancer. And he was in one of my groups. His wife was in a caregiver group at Cancer

.  And he had said that they had at the hospital, they had a breakdown for spouses and patients. And they went to it and then after they had the educational piece they separated the walls and they had the patients on one side and the caregivers on the other side. And he said, “I never knew how painful it was for the caregivers when they opened the walls.” And on the patient side there was laughter, there was a lot of things that were shared. On the caregiver side there were only tears and eyes that were just; their life was equally challenged and so uncertain in terms of their future.

We need to communicate better, keep the open lines of communication, and we need to care for the caregiver.

Impact of Cancer on Patients and Caregivers

Welcome to our next segment. In this segment we have Taylor, Nancy, and Richard all with us, welcome all.

So first, Taylor, tell me, we’ve been discussing about communication a little bit. So how is it like communicating to your loved ones when you first kind of told your mom about the diagnosis, your loved ones about the diagnosis? Do you think you could have more resources at that time? What do you think, how did you communicate?

 So for us we’ve always been a family that has had very open communication and no topic was really off limit. And so that kind of is how my cancer diagnosis and communication was with my family. But I think that, you know, not everybody is like that and not everybody is open like we are. And so I think if you can have initial conversations with the patient and the caregiver team about what you want to talk about, what you don’t want to talk about is important because it makes everybody’s life easier moving forward. And YourCancerGamePlan.com provides tips and resources for patients that need help in, in communicating and doing it effectively.

That’s very important because the first time you heard of the diagnosis kind of everything falls apart so that’s very important. Now tell me you were in college at that time, your sorority sisters told me about that. How was your interaction with them?

 So that was actually really unique for me because as a 21-year-old you’re not fully an adult, and to grasp and understand the severity of the situation and what I was going through I think was challenging for all of us — myself included. And so for me as well, physically I didn’t change a whole lot. So I did lose a little bit of weight just from the surgery and not having as big of an appetite. But I was extremely weak and very sore from the surgery. And so sorority sisters and girlfriends once I got back to college were like, would come up and try to bear hug me, and I’m like, ‘okay’.

..... you put .... thing, ‘I love you, but don’t hug me’?

 Yes. Right. And so for them on the outside I looked fine. But emotionally and physically I was a completely different person. And so I think trying to communicate the severity of what I’d gone through was probably one of my biggest challenges.

Do you think at 21 they understand like a little bit, or did they want to make everything rosy saying, “You’re great, everything’s great.” You know?

 Yeah, I don’t think anybody at that age can truly understand that kind of diagnosis. So, you know, and I think oftentimes people don’t know what to say. And so they just try to make everything positive. And while I appreciate that, there are times where everything isn’t positive, and it can be difficult for patients because everything isn’t rosy and peachy. And so trying to…you know I think what was helpful for me was that there were certain friends that I could have more in-depth conversations, and then there were some that just could not comprehend, and that’s okay. It didn’t mean that they didn’t love me or that they didn’t care. It’s just that they couldn’t go there, and everybody kind of processes differently. But trying to understand and grasp that as a 21-year-old myself was challenging.

Amazing on that, you did an amazing job. Tell me, did you ever end up going to the spring break that you missed? Did you go on vacation with them?

 Yes, I did. I got an opportunity to go several times and we still get together on a regular basis.

So maybe the friends you had as sorority sisters, you still meet up and talk and everything?

That’s amazing. So Nancy, tell me, from a caregiver’s perspective, how important was communication?

 It was very important. It was important for us to be able to communicate with Taylor, but it was also important to be able to talk to her care team, and also to communicate with other family members and extended family members and the support system of the people within our church and our neighborhood.

So it’s very, very important you think. So do you think you had layers of communication, like different with the.

And how did you take care of all of that. That’s a lot of stuff, like a lot of people calling in the, relatives, not relatives, you know, like we talked about .... there are some researchers out there, so doers, some friends and everything. So how did you; that’s a full-time job by itself.

Navigating Lung Cancer: Embracing a New Normal | Cure Connnections