Being a cancer survivor is not just about enduring treatments—it's about transforming adversity into advocacy. Through early detection and relentless self-advocacy, we can not only survive but thrive, using our experiences to empower others.
When life throws its harshest challenges, like a cancer diagnosis, how we respond can shape our future and the futures of countless others. I recently had the profound opportunity to interview Lainie Jones on my podcast Life Intended, where she shared her extraordinary journey as a six-time cancer survivor. Lainie's story is not just one of survival; it’s a testament to the power of advocacy and the impact of living every day with purpose and intention.
One of the key takeaways from Lainie’s story is the critical role of early detection. Lainie’s proactive approach to her health, even when faced with a daunting diagnosis like glioblastoma, underscores a simple truth: early detection saves lives. As Lainie pointed out, if her cancer had gone undetected for just six more months, her story could have been drastically different. This highlights the importance of being vigilant about our health and seeking regular screenings, especially when we have a family history of cancer.
Advocacy is a recurring theme in Lainie’s life. From her initial diagnosis at just 18 months old to her ongoing battle with glioblastoma, Lainie has consistently advocated for herself and others. She emphasizes the importance of being your own advocate in the medical system—asking questions, seeking second opinions, and not settling until you are comfortable with your care team. Lainie’s creation of "The Early Detective," her platform for raising awareness about early detection and genetic testing, is a powerful example of how advocacy can extend beyond personal survival to making a difference in the lives of others.
Despite facing multiple cancers, Lainie has chosen to live each day as if it were her first. This mindset is more than just a coping mechanism; it’s a deliberate choice to live with intention. By focusing on the present and finding purpose in each day, Lainie has turned her experience with cancer into a positive force, inspiring others to do the same. Her story is a powerful reminder that living with intention doesn’t mean ignoring the harsh realities of life but rather facing them head-on with purpose and determination.
No one goes through a cancer journey alone, and Lainie’s story is a testament to the importance of a strong support system. From her husband, who ensures she stays on top of her health, to the social workers and therapists who provide emotional support, Lainie’s journey underscores the need for comprehensive care that addresses both physical and mental health. As she points out, advocacy is not just about speaking up for yourself; it’s also about ensuring that those who care for you have the resources and support they need to help you through your journey.
Lainie Jones’ story is one of incredible resilience, but it’s also a call to action. Being a cancer survivor is not just about enduring treatments—it’s about transforming adversity into advocacy. Through early detection, relentless self-advocacy, and living each day with intention, we can not only survive but thrive, using our experiences to empower others. Lainie’s journey reminds us that life is not just about the challenges we face, but how we choose to respond to them.
Links:
Ready to live a more Life Intended? Get my Life Intended Journal to start your journey to a more purposeful and intentional life. For more inspiring stories and resources, visit Life Intended's official website. Subscribe to my weekly newsletter to get episode updates, announcements and inspiring content. You can also follow along on Instagram @lifeintendedpodcast for content, updates, and more!
Kelly Berry (00:00) Hi friends and welcome to Life Intended. I'm your host, Kelly Berry. Life Intended is a podcast that explores what it means to be true to yourself and live an authentic and purposeful life. Each episode explores my guest version of personal growth, self -discovery, and the pursuit of becoming the best version of themselves, as well as how to find the joy in the journey. I have an incredibly special guest here today and I'm so excited to talk with her and share her story with you all.
Her name is Lainie Jones and I guarantee you'll never forget listening to her story and listening to her talk about how she approaches each day. She is the epitome of living an intentional life one day at a time. Here's a little bit more about Lainie and then I'll let her tell you her story. In 2008, just before Lainie was about to attend nursing school, she was diagnosed with breast cancer at the age of 24. Unable to attend nursing school, Lainie shifted her focus from becoming the nurse she always dreamed of being to becoming the patient she never imagined. Since her breast cancer diagnosis, she has had multiple other primary cancers. She has turned her journey with cancer in a positive direction, vowing to stay true to her motto, to live every day as it's your first. Lainie has also taken her own battle to others who are combating the disease, helping them turn their fights into positive experiences.
Lainie was married in March 2012 and her wedding was featured on the NBC Today show website as the cancer fighting bride, bringing a message of hope to countless young Not only does Lainie face her own journey with cancer, she is devoted to finishing the fight against cancer and currently works for American Cancer Society. Lainie has taken her diagnosis and has not let it define who she is, but rather empower her to help others. Every morning she wakes up and leads her life with purpose. So before I introduce or let Lainie tell you a little bit more about herself, I wanted to kind of give you the background on how Lainie and I met. We met about, I'll say a month ago, might be a little bit more, when we were both in a women's virtual mastermind meeting and we were put into a small breakout group together. And during her introduction, she mentioned that she was a cancer survivor and worked for American Cancer Society.
And so I made a mental note to look her up and connect with her. but later that day, Lainie actually had messaged me to connect and just to let me know she'd love to be a guest on the podcast. And it was only then that I really had the chance to look into her story, her background and what she's been through. And I will tell you after I read it and kind of put all the pieces together, I was literally shaking. Lainie's not just a cancer survivor and I put cancer survivor in quotations.
She is a six time primary cancer survivor, which means she has had six different primary cancers. She is currently undergoing treatment for glioblastoma. And if you've followed my story or kind of my why for starting the podcast, you know that glioblastoma is the cancer that my best friend, Lori, passed away from last year. And so it all felt like the most meant to be chance encounter. And I've just loved learning more about Lainie and her story. and really just can't wait to let you all learn more about her too. So welcome to the podcast, Lainie. is so great to have you here.
Lainie Jones (03:26) Thank you so much, Kelly, for the wonderful introduction. And I'm telling you, like, the day we met, I just felt like it was kismet, and we were in each other's lives. So I'm so happy you shared that because honestly, like, I mean, first of all, thank you for sharing, you know, your personal connection to cancer. And I always like to tell people, like, I come with a disclaimer because I never want to go right into my story because it's a lot to, like, you know, digest. But, you know, I love just kind of sharing my intention of everything and my why. So I'm so excited that our paths have crossed.
Kelly Berry (04:00) Yeah, me too. it felt surreal, felt slash feels But you you're incredible. yeah, I'm just excited to kind of dive into this conversation. I know that you do so much for the community, for American Cancer Society. are, you know, I know that you mentioned even you're always reaching out to people who have cancer and kind of encouraging them. And everybody's always like, you know, how are you doing this when you're walking your own fight every single day? And so, you know, I just think it's so inspiring and everybody can really just, you know, take one thing away, I think that will help them in their lives, whether their experiences with cancer or other illness or just, you know, everyday trials and struggles. I think that you have just a lot of good to share, so I'm excited.
Lainie Jones (04:54) Yeah, so and I think for me it's always crazy because my first cancer diagnosis was at 18 months old, right? So I was a baby. I didn't remember what happened. I'm so grateful for my parents every single day because they were also diligent as I'm very diligent with my health as well. And of course it's obviously not easy for parents to watch their child go through cancer. And fortunately for me at a young age of 18 months old, my tumor was just resected. I had adrenal cortical carcinoma. And I say just because I don't remember any of it. So I'm sure it was a very, a lot for my parents to really cope with. But I always had the memory of a large scar stomach because this was in 1985. growing up, I obviously always knew I was a cancer survivor. And I think times are so different nowadays with social media and just talking about it. And I never really wanted to talk about my cancer when I was a child. And I think just because it wasn't as prevalent in conversations and people really didn't talk about a cancer hypnosis or anything. So I used to ask my mom, like, what do I tell people? Like, I never wanted to wear a bikini. I never wanted to go to a swimming party because like I was embarrassed. Like I hate even saying that because now like I look at my scars and like, hell yeah, like I have lot of scars and I'm proud of them. But my mom used to tell me, she's like, just just tell people you swallowed a penny or you got bit by a shark. We'd always make up like fun stories because she never wanted me to feel uncomfortable. But you know, it really wasn't until I was about 15 and I was at an American Cancer Society event and you know, I got a survivor shirt and I walked the track with other survivors and like people were just like shocked that I had cancer as a baby. And now I'm just like, wow, it's like so many people are facing this. And you know, I always say there's a good side to social media and it's this space, right? And I think for me, you know, just growing up from like 15 to like my adult life, I always wanted to be a nurse. I just, felt like, you know, as a pediatric cancer survivor, was just like, my nurses, like I didn't remember them, but I just feel like they always impacted my life, even when I went back for checkups. So was like, that's my way of giving back, right? Like I felt like that was so important. And I feel my whole life, like I've just felt that I want to be proud and help others, you know going through a cancer diagnosis. And that started after 15 years old. So as you shared, I was going into a nursing school and I volunteered in the pediatric oncology unit right here in Fort Lauderdale. just seeing the resilience of children facing any kind of diagnosis, right? Not just cancer. They were always smiling. They always just were so strong. And I was like, wow, that to me just gave me so much hope.
And little did I know, you know, going into nursing school and a couple weeks later, I myself was going to be diagnosed with cancer. And like, I just like, I just always thought of those kids faces and still do to this day that like, if they can have so much resilience, so can we, right? And it's not because they don't know what's going on. It's just because they, they just, it's life, right? So it's, it's just living life with a smile. So I always attribute some of my positivity to that because it's, you why can't we all just have the mentality like a child and just do things with a smile? Sometimes there are tears, of course, but it just never fazed them. So I'm really fortunate that I had that experience. And no, I didn't become a nurse because I guess God had other plans for me to become the patient, right? And I look back and I shout out to every single medical professional, because that is a job that is tough.
And I'm like, every time I'm in a situation, I'm like, God bless you guys, because I could never do this. So yes, so I had breast cancer when I was 24. besides the children kind of shaping my journey, my quote is, is I live every day like it's my first, right? And that's because I'm so fortunate that the life I get to live every single day because I caught my cancer early -ish. I say early -ish, right? Because I was 24 and I always thought I could never get cancer again because I already had it once. What a shitty way to think, right? But seriously, always thought, little did I know, this was always my theory. I already had cancer once and I never wanted fake boobs. I just, I like...
Kelly Berry (09:25) Little did you know, right?
Lainie Jones (09:36) The two things I said, I'm like, here I am, I have fake boobs and I cancer again and multiple times later. sometimes you don't always wish for what you want. So I was going into nursing school and that kind of turned me in a little bit of a hypochondriac. mean, not to say I wasn't one as a child, but really just more diligent. And I always say everyone should be diligent, just going into nursing school, but doing yourself breast exams and just setting those reminders just because it can really happen to anyone, right? So July of 2008, I felt a lump and my doctor gave me a prescription for an ultrasound because I was 24 years old and had a family history of breast cancer. And I neglected to do it. And I neglected to do it and I said, I'm 24 years old. There is no way I can get breast cancer. This is like an old person disease.
I ignored it. And then six months later, I was turning 25 and was going to have to be off of my parents' health insurance. And my mom's like, go get all your tests done. And I was like, in the back of my mind, I'm like, that lump feels like it got bigger. So I told my OBGYN and he's like, I think it feels bigger. And he's like, you never did the ultrasound. And I'm like, no. And sure enough, two days later, I went from, well, the next day I went from mammogram and
I was diagnosed with stage two breast cancer. And I'm like, it could have been stage one if I would have done it in July or the year before if I was doing my self breast exam routinely, which I wasn't. And I'm just grateful. I caught it and I had a double mastectomy, went through chemotherapy and it was tough. And like I said, I never became the nurse and I just became the patient. And...
Kelly Berry (11:26) Mm
Lainie Jones (11:28) It wasn't until about 2009 where I was kind of just really like comfortable with everything I went through, right? I mean, I was very open about my story. My therapy was Facebook. I shared my journey on Facebook, which is like crazy to think that this was 2009. And just really my goal was to help inspire others to get screened, right? And do their self -press exams because I said, if it happened to me at 24, it can happen to somebody else. And there weren't a lot of young people at the time. So from that moment,
Kelly Berry (11:54) Mm -hmm.
Lainie Jones (11:58) I truly just wanted to be vocal about my diagnosis because I'm like, I just can't keep this. I was one of the youngest patients a lot of my doctors have seen. trust me, I'm not the youngest person that has had breast cancer. I mean, I always say could break records and other things, but not necessarily this. I do deserve medals for all my cancers, but it just really kind of paved the way for what I was about to endure you know, it made me really realize that like everything happens for a reason. And I've been given this gift of, you know, catching it quote unquote early, right? But I need to, I need to help others and be very vocal about this. And, know, mind you, I was genetically tested for the BRCA gene and I didn't have it. So I thought, okay, this is the only cancer I was going to get and, move on. So, you know, I think it's just,
Kelly Berry (12:42) Mm Mm -hmm. Yeah.
Lainie Jones (12:55) It was not what I expected because then following that, I was diagnosed with melanoma on my back. And that was thanks to my mom's friend who saw a mole and was like, she needs to get that checked out. And thankfully I did and it was localized. So they were able to just resect it, but I've had five more melanomas since then. And of course my journey doesn't stop there, but you know, I think for me, it all kind of paved the way for my future and just the outpouring of love not only that I received, but the lives I helped impact by being vocal. And that to me is priceless. So priceless.
Kelly Berry (13:23) Mm -hmm. Yeah. So where did, from the time, I guess, that you were diagnosed with breast cancer, what was the time from then until you found out that you had, it's Li–Fraumeni right? Yes. So tell us about kind of genetic testing process and what had happened in between the breast cancer diagnosis until that point.
Lainie Jones (13:47) Yes, yes. Yes, that was actually so crazy. again, like I said, you know, I was a young, I was young, I had the BRCA testing. That was like the time where it was very, you know, prevalent for people to get tested for BRCA. And I thought, okay, I don't have a genetic disorder. So it wasn't actually until my fourth cancer, because remember, I had a cancer as a baby, that I had asked my doctor about getting tested for Li–Fraumeni , because my mom and I heard about it on doctor radio on SiriusXM. adrenal cancer a signal to this genetic predisposition called Li–Fraumeni syndrome. And Li–Fraumeni syndrome is a rare, I like to say rare, but more and more people I'm learning have it. And again, I think that's because more and more people are getting genetically tested, but it's a rare genetic predisposition that your body's lacking the P53 tumor suppressor gene and by no means am I a doctor or a geneticist here. So I'm not gonna go two down the weeds down that hole, but Basically, I'm lacking a gene that helps suppress tumors from developing. So when they develop, they have a higher chance of being cancer. for me, I am a spontaneous mutation. So a lot of this comes from your parents. So people usually know that they have this and that their children get tested. me, my parents don't have it. They are both cancer survivors, but they don't have this gene, neither do my siblings. So I'm what's called a spontaneous mutation. And when I was diagnosed with my fourth cancer, as I shared, I was tested here locally, but because of the rarity of the right test wasn't done. So I was told I was negative everybody's like, well, you could have sued your doctor. I don't work like that, right? As they say, karma is your boyfriend, right? So fast forward to, I want to say March of 2020, 10, or my dates could be off.
Kelly Berry (15:37) Mm -hmm.
Lainie Jones (15:46) I had thyroid cancer that spread to my chest and I was sent to a facility called MD Anderson in Houston. And they asked me if I was tested for a leaf rhamenicin during given this being my fourth cancer because melanoma obviously is a cancer. So I had breast thyroid melanoma. And I said, yeah, I'm negative. And they looked at me with like 17 eyes. Okay, we don't think you are, but we're gonna test you anyways, retest you. Cause there was only one place actually that tested for it at the time sure enough, it came back positive. so what that meant for me is that, you know, I could develop more cancers in my lifetime. And, you know, I like to always put this plug. A lot of people are really scared to be genetically tested and genetic testing saved my life. Because if I didn't know I had this genetic disorder, my protocols would have been a lot different through scans, treatment, et cetera. So Now that they know I have Li–Fraumeni syndrome, I am treated a completely different way where I don't, my x -rays are very reduced, CAT scans, PET scans, where I was getting PET scans all the time, I get MRIs. Because radiation makes you more susceptible to developing a cancer in my case. So I need to reduce my radiation amount. So, you know, and my doctors are very diligent. They catch everything early. get my scans every three months. And again, disclaimer right here, everybody's different. So there could be someone listening that has Lefra Amini syndrome and says, why am I not getting scans every three months? Everybody's different. So that's like always to, even in your cancer journey, right? It's great to meet others that are going through a cancer journey, but just take bits and pieces of people's inspiration and stories but everybody's their own, right? Just because that person got nauseous doesn't mean you're gonna get nauseous. So here I am with Li–Fraumeni syndrome, as they call me Li–Fraumeni -Lainie. And it's definitely been wild. I'm always that person, like that 5 % chance something's gonna come about it. I get it. Like for instance, I had radiation from my breast cancer that returned and I got sarcoma five, three years later, as they told me. So they're watching me consistently. And I think for me, that has really helped me and early detection just really remain vigilant and my team remain vigilant in my journey and why I'm here because it's all about early detection, right? what it's about. And I think for me, that's what I preach about and share and how
Kelly Berry (18:23) Mm
Lainie Jones (18:31) Every single day I'm so grateful given, yes, I've had six cancers, but it could be worse. Life could be so much worse. And I feel I'm here for a reason and that's to share my story and live life with an intention. It's so important and just to help others. It's really genetic testing has saved my life, like I said, and it has also helped me inspire others to get genetically tested.
Kelly Berry (18:51)Mm -hmm. Yeah, so Lainie has her Instagram is called the early detective and that handle is in the show notes. I encourage you to check her out, give her a follow. She does. It's a really fun follow, especially for the type, you know, of awareness that she's bringing about. But she, when, she's telling you that she wakes up and lives every day with an intention and purpose and keeps such an amazing attitude like she does. it comes through in every conversation with her, every social media post that she makes. It's truly, in my opinion, lemonade out of lemons. But yeah.
Lainie Jones (19:42) Thank you. listen, it's like, everybody's like, how do you do this? How do you deal with this? And for me, what else do I have to do? What else can I do? This is life. I always tell people my motto is that, besides living every day like it's my first, you can't live in fear. Because if you live in fear, you're not living. And for me, yeah, it's scary. Trust me, every time. Well, but it's like, I'm not scared because I feel that I have a world behind me. I have amazing doctors. And you know, again, I catch everything early. And I think for me, that helps me every single day. you know, I've met so many people as I was just sharing with you a little bit ago, like I've met so many people who have been so diligent about their health and you know, the early detective, as I say, this is my reason for doing what I do is a girl I was speaking to yesterday, she's like, I feel like I have imposter syndrome with breast cancer. And I was like, my God, I've never heard that before. And it's because she didn't have to go through chemo, she didn't have to do radiation, but she did do a double mastectomy because of her cancer. And she only had to do the double mastectomy and the reconstruction. And I say only, but that's not only that, that is hard, right? Like that is probably one of my hardest surgeries. And she was telling me she has imposter syndrome because she didn't go through like the radiation, the chemo. And you know what? Nobody should ever feel that way because you should be proud that you were diligent and you caught your cancer early. That to me is the ultimate cure, right? It's staying on top of your health and catching things early and being your own advocate. Because I go back to when I got genetically tested and I didn't ask the Dr. more questions when he told me I was negative for my genetic disorder, right? And sometimes I think, what if I would have asked this or what if I would have asked that? And you know, now you have to speak up and you have to be your own advocate because if you feel something is not right, you need to speak up. Because for me, yes, I was 24 years old.
And yes, I ignored that lump. And it's not my doctor's fault that I ignored it, right? But on the flip side, shouldn't have there been a follow up? Like, did you get that ultrasound or did you know what mean? Those things. So both sides, you need to advocate for yourself. And if something's not right, demand the test or move on to another doctor. you you know your body best, I always say, and you live in the skin that you're in, right? So nobody knows your body better than you. So, you know, and the reason I created the early detective is because everybody kept telling me to write a book. Everybody kept telling me to do this. Everybody kept telling me to write a pod, do a podcast. And I just said, you know, for me, I'm like, why? Like I have cancer and I'm positive about it. And everybody's like, but your story is so inspiring and you can help others. And you know, what you've been going through is really a testimony to early detection. And it wasn't until I had my remaining adrenal gland removed in 2021 that the early detective was born because they found a mass on my remaining adrenal gland and they took it out. And not only did my adrenal gland regenerate from when I was a baby, my left one, but my remaining adrenal gland, the tumor that they caught was a stage zero adrenal cancer. And that is like unheard of. adrenal cancer is normally detected later and
I just felt so lucky that again, it was caught early, it was stage zero and there we are, the early detective. Everything was caught, you know, I'm staying on top of my health and that for me was so important and just again, to remind people to be their own advocate because anything can happen and stage zero is what we want, right?
Kelly Berry (23:28)
Mm
Mm -hmm.
Yeah, so advocacy is something that I really want to dig into for this conversation because, you and I have talked a little bit about this already, with my experiences so far, I've had several relatives and with cancers, but specifically to my best friend, Lori, who had glioblastoma, her husband, and I've said this before, I think is one of the best examples of advocacy.
for Lori because their experience both on the insurance side and on the doctor's side just felt like no one was really looking out for what was best for her. Were they recommending the standard protocol? Yes, but were they looking for every possible solution? Were they looking for angle, every clinical trial? Where should she be? Where could she go? What could they do?
And the answer was no. They didn't really feel like, it's not that they didn't feel like no one had her best interest in mind. was just, nobody is looking out for her. Like she's the most important person in their lives, like she and her husband. since then, I've mentioned my brother -in -law was diagnosed with stage four colorectal cancer. And same thing, I'm trying to demonstrate the importance of advocacy because I think so many people
I think we're conditioned to think that doctors know everything, that they are looking out for our best interests, that they don't make mistakes, that the list goes on and on. But the truth is, we're the only ones who know how we feel, what we think is right, if we have a feeling that more could be done, and more people need to understand how to, number one, advocate for themselves.
Lainie Jones (25:23)
Thanks.
Kelly Berry (25:32)
And number two, advocate for the people that they love in a way that is gonna get the best result. So talk a little bit about that.
Lainie Jones (25:38)
Exactly. Yeah, it's, I mean, it's so exhausting, right? Not only are you dealing with a cancer diagnosis, but then you have to kind of figure it out, right? And it's, I've been very fortunate and you know, it's funny. When I was diagnosed with glioblastoma this past November, 2023, I actually utilized services, which I never utilized previously at my cancer center and
Kelly Berry (25:44)
Mm -hmm.
Lainie Jones (26:06)
Not only do I work for the American Cancer Society, which I'm going to definitely put a plug for because there's amazing resources that can help you navigate. they have a 24 -7 -365 phone number, 1 -800 -227 -2345. And there's so many resources there as I actually utilized when I was first diagnosed and attribute a lot of my positivity to another breast cancer survivor who...
shared her positive journey with me and really helped me shape that positivity in my journey. Like I was 24, she was 60 and was so energetic and I said if she can do this, I can do this. But back to advocacy, I mean really, always like to say a lot of people don't know that you even have a social worker, right, in a hospital. And that is the first thing, right? Ask who your social worker is because
Kelly Berry (26:50)
Mm
Lainie Jones (26:56)
it unfortunately it's not the doctor's job, right? To help find those different things. Like yes, the clinical trials it is, but you know, I really think your social worker helps kind of navigate those things. Even down to like financial assistance, right? There's so many resources out there and I mean, you could search them till you're blue in the face. So a social worker really helps you kind of navigate those things.
and outlines them, which I think is a really great thing to have. like, listen, I never had a social worker. And I finally asked when I was diagnosed with glioblastoma, I'm like, okay, I think I need a social worker at this time. Even like any, every cancer center has a social worker. You know, another thing too, like that I just started doing is working a therapist. And like, she's my social worker at my cancer center, but she also does therapy sessions. And you know, there's a lot of great resources there.
Kelly Berry (27:34)
Mm -hmm.
Lainie Jones (27:51)
So I think number one is a social worker. Number two is leaning on friends who are in the cancer space, caregivers. Caregivers too. I think those are our number one individuals that we lean on. I think for myself, I would not be where I am today if it wasn't for my And I think also making sure, the cancer patient too, yeah, make sure your caregiver is okay.
And ask your social worker, is there resources for my caregiver? Right? Because that's something too, to make sure that they're also well established in the cancer space and understand what's going on and just, you you guys able to have conversations. just to, you know, I think the craziest thing is, is, you know, as I said early on, like social media wasn't a huge thing, but, you know, there's a lot of great tools on social media and really, yes, there's also a lot of misinformation. So, you know, take that with a grain of salt.
Kelly Berry (28:25)
Mm -hmm.
Lainie Jones (28:48)
But I really think just, know, me, number one, being an advocate in the cancer space in all different kinds of cancers. And I by no means am a professional in this space. But I think as somebody who's been through it, know, I kind of know the ins and outs, but just there's so many resources. So I always say, like, start with your social worker and then, you know, kind of navigate that way. But even just financially. Right. I mean, cancer is
detrimental I mean, it's a lot of people think like, my God, I don't know how I'm going to do this. There are so many resources out there and there are places to help guide you. So you should never feel alone it comes to cancer because there are things out there that will help everyone get through it. And from a standpoint of trials, right, and just
anything that's out there that you don't feel that maybe you're not getting the best of care. That's where you turn to your doctor and say, what else is there? Right? Don't be scared to say, you know, I'm not comfortable with this. I want to get a second opinion. Right? I think that sometimes you're like, I need to go with this doctor. If your gut is telling you, you want a second opinion, get that second opinion. Right? But then on the other side, too, don't get too many opinions. That's just my personal opinion. You don't want to too many opinions because you'll drive yourself crazy. Right? Like I think two is a great
Kelly Berry (29:50)
Mm -hmm.
Yeah.
Lainie Jones (30:08)
great number and again, that's my own personal opinion. But I definitely just think, know, for me being able to be a small part of advocacy in the cancer space is so important. And I always say to now is a good time to have cancer. I hate to say that, but there's so much out there, so many things, and it's just amazing how far we've come in the cancer space.
And I think it is, you listen, I think it's not only thanks to research, but also thanks to social media of people really opening up and sharing their journey, right? Like myself, I can't hide this. There is no reason to hide it. And yes, I think sometimes it defines who I am, but I don't want it to define who I am. I want it to help others. That is the only reason I created the early detective. I am by no means an influencer, right?
Kelly Berry (30:45)
Mm -hmm. Mm -hmm.
Lainie Jones (31:04)
only want to just help people. I always say, I don't care if I have one follower or one million followers, as long as I'm making a difference in people's lives, my job is complete. That's how I feel. And it's just so important. And just being your own advocate is the most important thing ever. I mean, you cannot feel internally that, should I ask that question? Should I not ask that question? And trust me,
Kelly Berry (31:17)
Yeah.
Lainie Jones (31:33)
I do that sometimes. Like I get scared and I've turned the corner where I'm just like, I need to speak up. Like for instance, when I was diagnosed with glioblastoma, I, first of I was a shock. It's probably one of the hardest cancers I've been through, but I never asked like what type of cancer it was because I was just like, I was scared number one to know. And number two, I just like was kind of like, they'll tell me.
Kelly Berry (31:34)
Mm -hmm.
Lainie Jones (32:02)
Well, they never told me. They told me it was brain cancer. I knew it was an astrocytoma high grade. So somebody said, do you have glioma or glioblastoma? I was like, I honestly don't even know. And I think it was just a mental way to cope with it. I didn't want to know I had glioblastoma. But then I just asked. And I felt like, internally, was like, do they think I'm stupid that I'm asking this question now, like five months later? But no.
Kelly Berry (32:05)
Mm -hmm.
Okay.
Lainie Jones (32:29)
they're like, you have glioblastoma. was like, okay, I just wanted to confirm. Doctors want to be asked questions, right? Like you should never go into an appointment and not ask any questions, right? And maybe just absorb things when you're in the doctor's office and then ask the questions later. That's okay too. But I always encourage people, if you are going to an appointment, come with a list of questions. Always have a second person in the room with you, right? Because I never, I mean,
Kelly Berry (32:36)
Mm -hmm.
Mm
Yeah.
Lainie Jones (32:55)
Now I have brain cancer, so that's my excuse, but I never digest what people are saying when I'm in a room. There always has to be someone else there because no matter what type of cancer, no matter what you're going through, cancer or not, you're not going to digest everything someone is telling you. So it's always good to have a second person in there to help be your advocate. Right. We can't do this alone. Right. Having a cancer diagnosis is a team effort and
Kelly Berry (32:58)
I'm
Lainie Jones (33:23)
And just in general, like always form that team, right? That circle of trust and people who are there to help advocate for you because it's only going to make things better for your journey along, like along the way.
Kelly Berry (33:35)
Yeah, yeah, I love the coming with a list of questions. think, you know, it's so easy to feel like you know all of the questions in your head that you want to ask and then you get in the room and the conversation goes a different direction or something and then you leave and you're like, you know, crap, I didn't ask any of these questions that had before I went. And I don't think that really there's anything that feels worse than that, you know, that you didn't get any of the information that you were looking for.
Lainie Jones (33:59)
Right.
Kelly Berry (34:03)
I love that having a second person with you because I think not only does that help you digest, but then you can have somebody to talk to about the appointment or the conversation afterwards and make sure, is this what you understood from that conversation? And then if not, you know, okay, well, here's something that we need to get some more clarity on. Yeah.
Lainie Jones (34:13)
Exactly.
Absolutely. And even too, something I wanted to just mention as well is like, don't Google things. Like I always say, if I Googled my syndrome, my diagnosis, I'd be dead. Like that's just like, Google would like be like, okay, are you even alive? So like, don't Google things. Let's the doctor, like for instance, yesterday, my pathology had come back at like late at night and I saw it and my husband and saw it and we told her stuff, you know what?
Kelly Berry (34:31)
Okay.
you
Lainie Jones (34:54)
let's just let the doctor tell us what it is, right? Like let them talk to us, let us, and you know, really it's so important to just leave it to the medical professionals to tell you your diagnosis and to tell you, you know, what everything means. honestly, yes, Google is a wonderful resource, but when it comes to a diagnosis, everybody's different, right? Everything is different. And I think you just have to leave that to the medical professionals and just not drive yourself crazy.
Kelly Berry (34:56)
Mm
Lainie Jones (35:23)
And yes, I definitely have Googled things, right? Like I'm not saying I never do that, but really like for resources, I think you have to leave things up to medical professionals in all illnesses, right? Don't just Google something, a symptom that you're having and say, and then brush it off, right? Call your doctor. Like that is, it's just, you don't know. And like now like things come up, you type in something and it literally can like...
Kelly Berry (35:26)
Thank you.
Lainie Jones (35:51)
write you a dissertation of like, what is happening to you? Like I tried it the other day and I was just like, my God, people must be diagnosing themselves and thinking they're medical professionals. So I think too, and like I said early on, everybody is different. Everybody's journey is different, right? Everybody, if I would say, if we were all the same, we'd have a cure for cancer, right? Everybody is made up genetically different. So you may handle something one way and that person may handle something the other way.
Kelly Berry (36:00)
Mm -hmm.
Lainie Jones (36:20)
I think just listen and then offer suggestions and that's it. Like that's what I do. always, people are always like, well, how did you go through this and how did you feel about this? And like, even with my glioblastoma, I was talking to a friend and I said, did you get this symptom? And she's like, no. And then I was like, I'm very forgetful. Did you have, no. So like, you know what? Then I said, okay, that's fine. I'm just having different, different symptoms and that's it. So don't work yourself up over those things. But you know, I think that those are just things, you know, just to make sure that
Kelly Berry (36:45)
Mm -hmm.
Lainie Jones (36:49)
you when you face any type of diagnosis, right? Just digest it and then ask your medical professional or your social worker.
Kelly Berry (36:57)
Mm -hmm. Yeah. So how would you like advise somebody or coach somebody if they're feeling like I'm not really jiving with my doctor? how do you get into a really good relationship with your doctor where there's a lot of trust? And what would you tell somebody if they're just not getting there?
Lainie Jones (37:20)
So, actually, I'm so happy to ask this question because I actually had a similar situation, which I've never had before, right? I've always jived with my doctor. I'm a very positive person. And my first meeting with my neuro -oncologist, I left there in tears. And that's never happened to me before because she said to me the words, do you want to know your prognosis?
and was very just kind of by the book, right? Very textbook. And again, there was nothing she was doing wrong. It was just very like cotton dry. Like I'm reading the textbook and this is what I'm gonna tell you. And I was like, I didn't even know what to say. And then my light switched on and I was like, okay, we need to stop right there, right? And again, you need to be your own advocate and be comfortable with your doctor.
That is the most important thing. So I said to her, I said, so you see in here, it says 100 % resected, which are my tumors, and they got it all out. said, I have had six, well, that was six cancers. I've had six cancers now and multiple reoccurrences. And I said, I am an extremely positive person. I said, the words prognosis are not in my vocabulary. I said, from here on out, we need to...
remain positive and hopeful and take every day as if it's a new day. And yes, I recognize that I'm dealing with a very aggressive form of cancer here, but what I'm living by right now is that we got it all out and I'm going to get all my treatments and I'm going to finish it and move on. Right? Like I, like I know that, right? Like, so I kind of just have to level set, right? I think it's really important, you know, for you to level set with your doctors and, and let me tell you something.
Kelly Berry (39:03)
Mm -hmm.
Lainie Jones (39:09)
from that conversation on, we have been best friends, right? Like she knows how I am and like she understands. I'm like, she will be real with me. She's always real with me, but she will tell me if something's not right. And I told her, I don't want any bullshit. Just tell me how it is, but you cannot put a price tag on my life is basically what I said to her. And I think for me and just for anybody out there dealing with a doctor that maybe they're not really driving.
Kelly Berry (39:13)
Mm -hmm.
Lainie Jones (39:37)
I would give it a chance, Like give it one or two chances and really see how they listen to you, right? And if it just doesn't work, then you move on because I honestly think there is nothing more important than loving your care team. I just think if you, even the first visit, if you're like, I don't like this person and you have a bad feeling, same thing with your body, right? If you have a bad feeling, act on it.
Kelly Berry (40:03)
Mm -hmm.
Lainie Jones (40:06)
And I think, you know, I've been very fortunate. Yes, I have an extensive medical team, but I think for myself in my current situation, I have an amazing medical team who everyone understands me. Right. And I think your doctor needs to understand who you are and how this is going to go. Right. This is your health. This is your life. And I think if, if, if you are not feeling comfortable with that person or you're just getting a bad vibe, you don't like their bedside manner.
you need to see somebody else. Because those are the people that are gonna save your life and you need to have a really great understanding and be able to ask questions. You have to have a great relationship. Like this person is along for the ride with you. So it's very important that you like that person. Like I always say, if somebody's a bad driver, you don't wanna get in a car with them.
Kelly Berry (40:37)
Mm -hmm.
Mm -hmm.
Lainie Jones (40:56)
Right? So just remember that. Right. I think it's so important. I think for me now here and out with like my neuro -oncologist, I love her to death. I liked her the first day I met her. I just didn't like the delivery of things. Right. And we had to just level set. I never had to do that before. It was really hard for me. And it was the second visit. Sorry that we had to level set. But I never have walked out of a doctor's appointment crying. And I think it was just that's where I'm like.
Kelly Berry (40:56)
Right.
Mm -hmm.
Mm -hmm.
Lainie Jones (41:21)
screw this, I'm speaking up, I just never was in that situation. And I think now our relationship has been so wonderful. And you want that with a doctor. You want them to know who you are as a person and not just as a patient, right? Like I think that that's where I always kind of like to balance is like, they need to know you, right? Yes, they know your medical, but they need to know you as a person and as a patient.
Kelly Berry (41:26)
Mm -hmm.
Right.
Mm -hmm.
Lainie Jones (41:48)
And I think that that's something really important to remember. And it's okay to tell them, you know what, I don't think this relationship is gonna work out. And that's fine. And also don't let someone tell you that you can't see another doctor in the practice too. I had a situation where I wanted a female doctor and they assigned me to a male doctor. This was a while back. And then they told me I couldn't see a female doctor. And I was like, bye.
Kelly Berry (41:55)
Yeah.
Mhm.
Lainie Jones (42:13)
I was assigned to that doctor and I couldn't switch doctors. So that's another thing too. Just make sure you are advocating for yourself in that space. If you want to see a female doctor, you see that female doctor, right? Nobody can stop you from those things. And that just could be your sign too. Like this might not be the right place. And same thing like with your treatment plan. As I said before, right? Don't wait too long, but if you're not comfortable with this plan and you feel that there's something out there, then go to get a second opinion.
Kelly Berry (42:30)
Mm -hmm.
Mm -hmm.
Mm -hmm. Yeah.
Lainie Jones (42:43)
You know, this is your life and you need to do what's best for you.
Kelly Berry (42:47)
Yeah, I love all of that, I do think, you know, what I'm hearing is like the underlying tone of everything that you're talking about is kind of protecting your mental state and making sure that you stay in a positive mindset. And the way that you ensure that is to make sure that you've got a team that you're confident in, to make sure that you're advocating for yourself and you've got loved ones who are doing that so that you feel
confident in the treatment plan, that you're utilizing the resources. And I'm absolutely amazed. I know this came up in another conversation that we had that you have just now started therapy because I think with your outlook on things and with everything that you have, your lived experiences, as well as what you're currently experiencing, it's just to me, it's mind boggling that you've been able to kind of remain so positive on your own.
Lainie Jones (43:14)
Exactly.
Yeah, it's, it's so crazy because so I went to a support my so I love my social worker. She's amazing. And I always say I'm like, she kind of lured me in right? When I was diagnosed with brain cancer, and she used to work very heavily in the brain cancer space prior to her current role. And went to a support group for breast cancer. And you know, it's funny, I always
Kelly Berry (43:48)
Yeah.
Lainie Jones (44:02)
shied away from going to support groups, especially like for breast cancer specific, because I never wanted anybody to be scared, right? Listening to my story and thinking like it's gonna happen to them. Like I'm always looking out for others. That's like something I always do is like I always look out for the wellbeing of others because that's just who I am, right? So I went to the support group and I was the only one that cried. I was like, I'm like, this is so embarrassing.
I wish, but you know what? I think it was also just crying because I never knew I needed it, right? I was like, my God, sitting in a room with amazing young women and this isn't your typical support group where everybody's doom and gloom, but it just helped me so much. And then the next day I talked to her and I didn't realize I just had so many things I needed to speak about and talk about. sometimes it's just like, we're just talking about everyday life, right? But it feels so good.
Kelly Berry (44:34)
Mm -hmm.
Lainie Jones (44:56)
And a lot of times there's like a stigmatism about like a stigma of like therapy is like, it's, you don't need therapy. And like, it's like shy to, it's frowned upon to go to therapy, but honestly, it's been the greatest thing that's happened to me. And really just like, it's a friend to talk to that isn't in your everyday life, right? And you share your everyday life and they help you get through those situations. And I just never knew I needed it. And you know,
Kelly Berry (45:14)
Mm -hmm. Mm -hmm.
Lainie Jones (45:23)
Brain cancer has been probably one of the hardest things I've gone through just because I have a lot of short -term memory loss. I always don't feel like I'm giving 120%. It's a lot. You just don't feel like yourself anymore. It's almost like a constant fog. And just talking to somebody about that really kind of helps you feel that, okay, it's normal. These are things. And every day I always say, I take...
five steps forward and four steps back, right? Like it's just, I'm getting there. It's really a lot to go through and you know, it was the right time to start seeing someone, right? It just really, I just never felt the need to. And I think for me, you I just love helping others too. So I always just felt like, you know, is this gonna kind of mess up me helping other, but it doesn't. It's really been the greatest gift ever.
Kelly Berry (45:57)
Mm -hmm.
Mm -hmm.
Mm -hmm. Mm -hmm. Yeah. So your experience with brain cancer, you had initial surgery to remove, and you mentioned 100 % resected, which is amazing. And then you had, was it 30 rounds of radiation?
Lainie Jones (46:33)
Yeah, so I was called the Halloween seizure. I had a seizure on October 31st. I had no idea I had a seizure. I was home by myself. my doctor ended up ordering a brain MRI. And sure enough, they found two or three spots on my brain. And I had a craniotomy, fully resected.
Kelly Berry (46:38)
Yeah.
Lainie Jones (46:58)
did 30 rounds of Brady radiation for my 40th birthday. was actually wonderful. And then now I'm on chemotherapy for a year and I get brain MRIs every eight weeks just to make sure everything is working. have five more rounds to go. you know, it's honestly, it could have been a lot worse. I really am very grateful. I think the worst part.
Kelly Berry (47:03)
You
Lainie Jones (47:23)
of the entire thing probably was not being able to drive for six months. But, you know, other than that, you know, it's just been definitely interesting and just also interesting the amount of people I've met that have had glioblastoma, right? And who have had a loved one who has glioblastoma, but, you know, it's definitely probably the scariest, right? Because it's very aggressive. There's a lot. There's not that many treatments out there for it that, you know, kind of system.
Kelly Berry (47:27)
Mm -hmm.
Lainie Jones (47:52)
sustained things, but again, it was caught early. For me, I was having brain MRIs every year because of my genetic disorder. you know, I think the scariest thing they ever told me is that if my body didn't have that seizure and it was six months later, it would have been a completely different story. So back to my reason of getting screened and early detection saves lives. And like, I think for me, I really didn't have any symptoms. I always had headaches just
Kelly Berry (47:55)
Mm -hmm.
Mm -hmm.
Mm
Lainie Jones (48:21)
from like Florida weather and sinuses and just, so I never kind of never thought anything was wrong. I was having more frequent ones, but again, I just thought maybe I had a bad pillow or whatever. So, you I think for myself, you know, maybe I should have done something more, but you know, what can you do? Right. But I think at the same time too, you are experienced things like that, that, you know, more frequent headaches, you know, speak up. And that's really, it's so important.
Kelly Berry (48:37)
Mm -hmm.
Yeah. Do you have any idea how many total like rounds of chemo or radiation you've been through?
Lainie Jones (48:53)
my God, it's funny you asked that because honestly, like I was thinking about that the other day. I had chemo for breast cancer. That was six months. I had chemo for when I was diagnosed initially. Then I had thyroid cancer and I did, I think I've had probably 30 surgeries. So surgeries is, that's one thing. I think I've had about 30 surgeries. I've like,
Kelly Berry (49:18)
Okay. Yeah.
Lainie Jones (49:22)
the only the organs that you actually need to live right now left. So we're good. Like I have the right organs right now. So like I'm maintaining that. I did chemo, then I did radioactive iodine for thyroid cancer, which came back twice. My breast cancer has come back three times. I did radiation for the breast cancer. And yes, I know they said that my body can't really have a lot of radiation, but this actually
Kelly Berry (49:26)
You
Okay.
Lainie Jones (49:50)
the negative outweighed the positive, the radiation. So then I got sarcoma from that breast cancer radiation. I did chemo for breast cancer three times. I've lost my hair three times. I did chemo for sarcoma. I've done, like if you wanna know the cocktails of chemo, just call me because like I've probably done them all. And then I'm doing chemo now for brain cancer. I did 30 rounds of radiation.
Kelly Berry (50:13)
Mm -hmm. Mm -hmm.
Lainie Jones (50:20)
brain cancer. Melanoma, thankfully, everything's just been respected. And that's come back like five times, but they're just like moles. So I think that that's about, I probably said I think I've done chemo five times maybe, and radiation twice. But yeah, you know, I've had it all. It's like, just give me whatever you need to give me to get me better.
Kelly Berry (50:28)
Mm -hmm.
Mm -hmm.
Mm -hmm.
Yeah, yeah. you, how would you say you tolerate chemo? Does you tolerate it pretty well or does it depend?
Lainie Jones (50:51)
Yeah, I would say so like the current chemo I'm on now, I always say it's kind of like, I hate to say walk in the park because it's definitely not physically, it's definitely the chemo now is harder, I would say on this tail end. it's a little more frustrating because I never had issues with my blood counts. Like my blood has always, like I always say, people will test me for things and you would never know I was going through chemo. Where currently,
My counts are very low and my platelets are low. I've had delays in chemo. I just, think for me, that's probably the hardest thing I deal with right now is that like I get very frustrated when my numbers aren't good. And I've also, I haven't stopped working. I worked through radiation. worked through, I took two weeks off for my craniotomy and then I was back to work for my craniotomy like two weeks later. So.
Maybe three weeks, but I think for me, I just try to keep working and something I've been focusing on too is working is not my sense of, it's not normal. It's not a normal thing, right? You need to take care of yourself first. So I've been really trying to do that. I just took a leave of absence, which has been really good for me because that also affects your blood counts, right? So that's been the the hardest thing. And I also couldn't get to the max dose that I wanted to get to.
Kelly Berry (51:57)
Mm -hmm.
Mm
Lainie Jones (52:11)
because it just was really taxing on my body because of all the chemo's I've had. So those are the little things that kind of keep me up at night as I like to say is, you I don't think too much of what if, but I just want to kind of figure out how can I tackle these things and get ahead of them. And thank God my husband, my caregiver is like so on top of vitamins and exercise and really just kind of, you know, keeps me on the course. So it's just super important to kind of.
Kelly Berry (52:26)
Mm -hmm.
Mm
Lainie Jones (52:38)
I would say Eastern and Western medicine combined is probably the best thing.
Kelly Berry (52:42)
Yeah, yeah, awesome. Well, we're just about out time. I feel like I could listen to you talk about all of those things for a long time. I just think you truly are inspirational, even far beyond probably the impact that you made and are making every day. So thank you so much.
Lainie Jones (53:01)
Thank you. No, thank you. And I honestly think, first of all, I love your podcast and just living life with intention. And I don't even think I mentioned what I do, but as I shared, I work for American Cancer Society. And I started working there because of my cancer diagnosis and being on a drug that they funded the research for that's saving my life. I think for me, yes, I didn't become the nurse I wanted to become, but I'm saving lives in a different way.
I think without a medical degree. And I think it's just so important to live your life with intention, even if it's not how it was planned out to be, right? We don't write the pages of our book. It's every day is a new day. And like I say, you live every day like it's your first.
Kelly Berry (53:39)
Mm -hmm.
Mm -hmm, you the the biggest gift that we all have is that we get to choose We get to choose how what we want to do how we want to do it The choices that we make, know indicate or kind of like dictate how hard the path will be To get there but we we can all choose and we can all make our lives exactly what we want and Be doing the things that we want and I think it's important that no matter
Lainie Jones (53:52)
Exactly.
Kelly Berry (54:14)
what you're walking, that you keep that intention and that purpose at the forefront. Because I think that that is, it gives you like the mental fortitude to face whatever comes your way. And if your story is not like next to that in the dictionary, I don't really know what is.
Lainie Jones (54:31)
You're so sweet. You are so sweet. And you know, it's funny. I first of all thank you because I honestly like we need more of this in our life. People need to understand that every day is intentional. And you know, I saw a quote yesterday and it says, the world needs who you were made to be. And that I think just sums it all up, right? And that's so important.
Kelly Berry (54:49)
Mm -hmm. Mm -hmm. Yeah, I agree. I think, you know, that's one of the biggest goals for me with the podcast is for people to, you know, stop to like pause and think about who am I meant to be? Like, what do I want to do? What, who am I authentically and what do I care about? And then...
Lainie Jones (55:08)
Yep.
Kelly Berry (55:15)
figure out how you can go after those things, stop living on autopilot, all of those things. So I love that.
Lainie Jones (55:21)
And authentic, authenticity is the most important thing. And like I said, like on my Instagram, I am that person. I'm silly, I'm quirky. I'm like, some days I'm like, I don't even know what to do, but like, I don't think so much about it anymore, right? I think for me, making a difference in people's lives is my purpose. And I think that that is so important for me and my intention in life and why I'm here, right? So everybody should remember that is, you we're all here for a reason and just,
Kelly Berry (55:24)
Mm -hmm.
Mm -hmm.
Mm -hmm.
Lainie Jones (55:51)
keep on keeping on.
Kelly Berry (55:53)
Yep. Yeah. In all of Lainie's links, she's done a number of interviews that I think are really great to get to know more of her story, her social. Please follow her. She's a great, a great follow, both entertaining and inspiring. And you never know. She, she may end up helping you, helping you help a loved But I think follow her so we can help her increase her impact in this world because you're doing just great work, Lainie.
Lainie Jones (56:19)
Okay.
Thank you so much, Kelly.
Kelly Berry (56:24)
Thank you for being here and for sharing.
