LAINIE JONES: Turning her diagnosis into her purpose

I sat down with Lainie Jones to discuss how she has turned her journey with cancer into something positive.

Thank you so much for joining me Lainie. To start this off it would be great if you could just tell me what you do and what the things you care about are and why?

I currently work for ALSAC / St. Jude’s Children’s Research Hospital. I oversee galas and events in the New York city market. I actually got involved with working in nonprofit in general given my history and connection to cancer, specifically childhood cancer. 

I had Adrenal cancer at 18 months old and always knew growing up that I wanted to do something to give back. Initially I had wanted to be a nurse, but that quickly changed when I turned 24 and was about to go into nursing school when I was diagnosed with breast cancer. My journey, unfortunately, didn’t stop there. I’ve had Thyroid cancer, Melanoma Sarcoma, and then most recently I had my remaining adrenal removed, during which they caught cancer super early at stage zero. Throughout this process I wanted to turn my diagnosis into my purpose, so that really led me to my work at St. Jude’s. Formally, I used to work for The American Cancer Society also fundraising. I truly believe that life works in mysterious ways and I’m still able to save lives without a medical degree.

I was wondering if I could hear more about your work with St. Jude’s and if there’s something that you think people should know about what St. Jude’s does and your part in that. 

Yeah, definitely. So the most important thing is our mission. What I feel so lucky to attribute a small part towards is that families never receive a bill from St. Jude’s. All we want a family to worry about is helping their child live — so the second a family walks into St. Jude’s, they don’t see a billing department.; all they have to worry about is focusing on their kid getting better. 

Patients at St. Jude’s don’t pay for treatment, travel, housing, or food and I work harder because I know firsthand the impact of hospital bills, stays and traveling to treatment, as well as the impact it can have on your family.

We’re also global, so our mission has impacted the world. It’s important to note that doctors send some of their toughest cases to St. Jude’s and our [resulting] research is shared freely. You might be in New York City and a kid might come in with leukemia and they’re on a St. Jude’s protocol, which I think is so important because our impact isn’t just making an impact in Memphis where the hospital is located, it’s making an impact all over. 

I just feel so lucky because there are so many incredible stories of survival. Since we opened our doors in 1962, we’ve increased the childhood cancer survival rates from 20% to 80% today. [However,] there’s still that 20% of kids who unfortunately don’t survive and that’s why I work hard: I want to be at 100% one day.

You mentioned that you originally wanted to be a nurse; what is something you feel that you gain from your work with St. Jude’s that you don’t from being involved in the physical aspect of saving lives?

I think it all goes back to purpose, right? Every single day I wake up and [don’t consider working] a job that I do [just as] the nurses who have had an impact in my life don’t think of their job as a job. [Loving your work] is very aligned with [what] I do every day…I lead [my job, my life] with purpose.  I know I’m saving lives…If it’s one life…if it’s 10 lives. 

I get to work with incredible donors as well, which for me is that relationship aspect I was most excited about besides saving lives. I was so excited about being able to build relationships with people. St. Jude’s offers me that as well, I’m able to listen to parents who’ve had children who were treated at St. Jude’s. I get to hear their stories.  A lot of times people don’t even know I’m a cancer survivor or a cancer patient because I want to be approachable. That’s the most important thing: being able to listen. I feel like if I was a nurse, I’d have to do the same thing, so I feel like there’s a lot of transferrable things to becoming a nurse and being a fundraiser at St. Jude’s because all-in-all we are saving lives under the sun.

I was part of the St. Jude’s High School Leadership Program last year and a big thing that you spoke about during your presentation was this positive mindset that you have and how you’re able to maintain that. How are you able to remain so optimistic throughout the challenges you face?

Something for me is a lot of people hear somebody that’s diagnosed with cancer and automatically think of me. I always say, I never want to be defined as, “the cancer patient,”  so I really let that shape who I am. I think I’ve embodied positivity because I have met so many survivors along the way who are going through similar things as I am. I always tell myself that life can be so much worse and I think that that’s really what has attributed to my positivity is that I’m so grateful for the life I’ve been given and that I caught everything early because of early detection. I have an amazing team of doctors and not everybody is as fortunate as myself. Leading with that positive drive — that life could be worse — is what has got me to where I am today. I’ve always believed you’re a survivor of the day. I don’t go back and say, “oh, why did this happen to me?” Or, “why wasn’t I able to become a nurse?” I feel like everything has been perfectly planned out for me the way it was supposed to — so I don’t look back and that really helps me be positive as well.

What’s some advice that you would give to someone who’s struggling with their mental health and is finding it difficult to be positive?

I truly think it’s important to live in the moment. My motto is: I live everyday like it’s my first — and I know that sounds weird because everybody’s like, “if you lived every day like it was your first you’d be like a baby!,” and I’m like no, no, no. Every day I wake up, and every day is a gift. That is so important to lead with: that not everybody wakes up. 

I think I get that from my grandfather who lived until he was 96. He would say to my grandma every morning, “it’s nice to see you again.” To me it is a gift just to wake up because I’ve been faced with death many times — being diagnosed with cancer and not knowing what the outcome is going to be. I think, not only can life be worse, but just find a positive in every situation — and I think that’s so important to somebody who’s maybe struggling with mental illness or depression or just feeling alone. I know during these times it’s very easy to feel alone. Even though we’re really getting back to normal, some people aren’t adjusting well and I think really just finding a light in a dark situation is very important.

I know I definitely struggled with my mental health during the pandemic and was wondering if you could share some ways you were able to keep your own spirits up?

Pandemic aside, even just going through chemo I had days where it was just like, “I can’t do this.”  I never wanted to give up, but I’ve had days where I just really felt yuck and just didn’t want to move forward. Something that my mom always said to me was, “Wake up, put your makeup on, get dressed for the day, and feel good.” It’s so important. Even if I didn’t want to put my wig on, or even during the pandemic sitting at home and you’re [just] in your pajamas all day — I think it’s so important to create a daily routine. Even if you’re not leaving the house, you’re still going to work — even if you’re not on a video chat. Keeping some sense of normalcy is so important…even if it’s not normal. 

I lived for 10 years of my life with an illness and my life was not normal. So I feel like now I’m adapted in a COVID environment because I’m used to being at home, but I think really just keeping some sense of normalcy that you would do every day in a normal world during the pandemic is super important. When you get off that regimen, then sometimes you fall in the hole.

You spoke a bit about your mom and I would love to know more about the support system you’ve relied on: how are you able to maintain a good group of people surrounding you?

Funnily enough, I’ve been with my husband for 17 years. We’ve been married nine [years]. We met at Abercrombie and Fitch, which is always a really funny story. He’s really been like my rock and, you know, I always say to myself, “Oh my God, if I was him I would have left me.” It really takes a special person to stand by your side. Not everybody is as fortunate as I have been with a relationship going through breast cancer. You kind of lose your dignity — like you feel like you’re not yourself anymore. I was diagnosed at 24 and everybody always said to my husband, “When are you going to propose to her?” His response was, “I married her the day she was diagnosed and I’m never leaving her side.” He’s just a gem…one of a kind…I’m so lucky. He has been my rock. 

With my parents, it’s the same thing. I have two brothers as well. For my parents I think it’s harder of course…seeing your child sick and that’s another thing that’s so relatable for me working at St. Jude’s — [you’re around] these parents and I see my parents in these parents, what they’re going through. I think that also helps me work harder. No parent should ever have to go through that and see their child sick. My parents are actually both cancer survivors as well. It’s really interesting because they were both diagnosed after I was diagnosed. So I was on the flip side and it was hard. Like it’s hard seeing your parents sick. My mom had a bone marrow transplant in 2018 at Sloan Kettering and it was probably one of the hardest things just seeing my mom go through chemo. But then at the same time, this is what she had to deal with. 

It really put things into perspective for me. It was so interesting because people are always like, “You went through it, why are you worried?,” but it’s so different now. Being a caregiver is totally different than being the patient. I have a whole new respect and love for caregivers because I was a caregiver for my mom and I saw her at some of her lowest times…it was hard. Thank God she’s doing amazing; so is my dad. I just think the support system is so important and I have some amazing friends but something that I always like to point out is: not everybody handles a cancer diagnosis in the same way as the patient who was just diagnosed. I don’t want to say I lost a lot of friends, but I have a lot of friends who are very distant now because they don’t know how to handle it. I respect that because maybe they had a loved one who went through cancer and they just can’t deal with it and maybe every time they see me, they’re like, “Oh God, she has cancer.” People get scared because they don’t want to become too close to somebody who possibly could pass away — like, it’s a reality; you never know. 

So I’ve noticed that…but I think it’s really learning how to talk to people — and again, back to my positivity is to shed that positive light! It makes other people want to come closer…it just lets people know that you’re okay and that it’s okay to ask questions and that’s why I’ve really been so open about my journey: I never want people to be scared. I will say too, I have people in my life who I respect and I realized don’t want to be around me and that’s fine! It’s not that they don’t like me or anything– they just can’t handle it. I think you need to know your boundaries and — again, back to listening — it’s so important to understand people’s feelings.

Switching gears a bit– I was looking at your Instagram account and was wondering: how did you decide to start cataloging your journey on social media? Have you been able to form a community of people with similar struggles and create an online support system for yourself through these platforms??

I actually have a really great community of people who have a similar genetic disorder to me: Li-Fraumeni Syndrome. It’s a genetic predisposition where my body is lacking the P53 tumor suppressor gene. What that means is that my body can develop tumors and they have an 80%-chance or 90%-chance of being cancerous — that’s why I get scans every three months so-on and so-forth. There was a group on Facebook of people who have the same genetic disorder and I joined the group — it was great, but I will say there’s some grim parts to it. You have to be able to handle it, and I know when the time is right to read stories and when the time is [right] to just shut it off. 

I have been open on social media about my entire journey since day one because I thought it was so important for people to understand what I’m going through and to know that it can happen to anybody. People always kept telling me, “you should write a book.” What’s really funny is whenever I post on Facebook, cause like, who uses Facebook anymore? — you’re probably like, “oh my God, you’re so old!”  — but whenever I post on Facebook something about when I go to MD Anderson or anything like that, I get the most likes. It’s really interesting…like if I post something about the St. Jude’s walk I get like five likes; but it’s just people are…I don’t want to say invested…but they are! They’re invested in my journey and they’re inspired. They’re inspired. So when everybody else is saying, “Lainie you should write that book!” I’m like, I don’t want to write a book;and unfortunately, I’m not a big reader. 

I wish I was a reader. I’d rather read blogs and you know more real things. It was actually just after this last surgery I had — I literally felt like, “Oh my God, I’m literally the luckiest person in the world.” As weird as that sounds, it was almost like a revelation for me. You are probably thinking: “haven’t you had that revelation 50 times? You’ve beaten this many cancers and you’re just now having a revelation after your sixth cancer?!” But I went into the surgery and I was very scared — like I was so nervous — this was one surgery where I was like, “I don’t know what’s going to happen to me?” I went in. I had a huge bag of medicine. I knew I was going to have to be on medicine for the rest of my life because I was going to have no adrenals; and I’m just like, it is what it is. My doctors had full confidence that everything was going to be good and I’d be good with my medicine. 

That night, I woke up and the surgery was only four hours. They anticipated it to be eight. So I’m like, “okay, winning there!” Then the doctors told me they were going to test my steroid and cortisol levels the next day to see if I had adrenal tissue that regenerated from when I was a baby. They told me there was a very small chance that [the regeneration] could work and I may not need to be on any meds.So sure enough, they tested it and my tissue was working and I’m not on any medicine! I thought, “wow this is insane. Like insane.” The doctors said to me, “you’re definitely an anomaly.” I felt like my world  was going to be completely turned upside down.[My tissue] just stayed completely normal. I’m just so grateful — and we were going back and forth before the surgery: “should I do it? Should I not do it? Should I take the adrenal out? What if it’s nothing? What if it’s something?” Well, sure enough, it was adrenal cancer that was caught at stage zero, which is strike three. I was talking to my friend one night and I said to her, “maybe I should just create an Instagram because my life is being saved by early detection.” She responded, “you should be called the early detective…” and the rest is history! 

I’ve had such a great response. I’ve done a few Instagram lives. I’ve had people reach out to me and they’re like, “I know you just created this Instagram, but I’ve been following your journey all along and you’ve really taught me to be my own advocate.” That’s really my hope for this because you are the only person that knows your body. You live in your body….If something’s not right, you need to act on it. That is really what my message is behind my Instagram: you do you. That’s the main thing, you know yourself, you live in your skin; if something is not right: act on it — even if your doctors are saying you’re crazy, you know yourself! I was a certifiable hypochondriac and it saved my life. That really is what my Instagram has been built on; I mean, it’s what [is] saving my life.

I do agree with you. I think it is almost more authentic rather than just publishing a book or something — just to see you face-to-face interacting with these people — I love that you’re able to do that. You kind of touched on how sometimes you have to take a break and step away from social media and I know it’s easy to get absorbed and sometimes see things that you don’t want to see. How do you maintain a balance and know where to draw the line and when to take a break?

Listen, I think we all suffer with it. We look at people and we’re like, “oh my God, I wish I was there and I wish I could do that,” and I’m totally that person– it’s almost a little bit of jealousy. Especially now during COVID: I am immunocompromised and I would love to travel somewhere, I would love to go to different places! Even seeing my friends  having babies…I can’t have children so I have to do surrogacy and it’s a whole long process. It’s one of those things where you’re so happy for them, but you’re just like, “why can’t I be in that situation?” I’ve learned to just shut it off and not let it absorb me. I think you need to just be happy for those people and move on and that’s it. I always say, it’s Instagram versus reality. 

What I’m really striving for with my Instagram is normalizing influencers. You see all these influencers and they’re promoting things and they’re getting paid for things and all of that. Normalize influencers who have real life stories and are authentic. I like to follow authentic people — I like to see the people who are really living life to their fullest and even some people who are really sick. ‘Cause, you know what, I’m inspired by that: they’re documenting their journey and they’re helping save a life.

I stopped following food blogs, too, because I was gaining too much weight! It’s about prioritizing what you want to see. Do I want to see people throwing crazy parties and having fun and…I don’t even know…and…and have that fear of missing out…? No. I don’t want to see that. I just don’t need the negative energy for myself. It might not be negative to them, but certain people are suffering and– listen, everybody has their own opinions, but seeing anti-vaxxers for me is a big struggle just because I’m locked in the house, so I just hide that negativity. That’s the most important thing to do.

So I have one last question to wrap this all up. What is something that you think high schoolers / the younger generation can do to get themselves involved with organizations like St. Jude’s?

St. Jude’s Leadership Society is a perfect example. There was nothing like that when I was in high school. Even just creating a fundraiser in your committee…joining a St. Jude’s Walk-Run… volunteering at events in New York City — we have numerous events. You do have to be 18 and older, but we have so many opportunities in New York to get involved and I think it’s just making that phone call to our office and saying, “how can I help?” That’s how I got where I am today: I called the American Cancer Society and I said, “I want to help. You guys helped me. I have a connection.” I was probably an annoying volunteer because I just wanted to volunteer and give back. I think it’s important to find purpose in something to volunteer in because it really shapes who you are as a person and you do learn so much.

Thank you so much for joining me Lainie! I appreciate it so much and this was amazing!

*Editor’s Note: Elements of the interview have been edited for breadth or clarity.

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