How TikTok Helped One Survivor Discover Connection and Community

Heal, Heal Spring 2021,

CURE Ambassador Program | <b>Nina Luker</b>

Lymphoma survivor Nina Luker talks about receiving a diagnosis at age 24 and how sharing her story with nearly 200,000 supporters on social media helped her find purpose.

In early 2020, 24-year-old Nina Luker was completely blindsided when she received a diagnosis of stage 4 lymphoma. It felt like a “death sentence,” she says.

While powering through treatments in the thick of the COVID-19 pandemic, Luker turned to social media to document and share her experience in a raw and unrehearsed way — and soon gained nearly 200,000 followers on TikTok, a popular social media platform that allows users to share short videos with their followers and the public, who identified with her situation and cheered her on every step of the way.

Now officially cancer free, Luker joined us on the “CURE® Talks Cancer™” podcast to share her cancer journey, her work with the Lymphoma Research Foundation and her advice to those who may have recently received a diagnosis of their own.

CURE®: Can you start off by telling us a little bit about your cancer journey and how you came to receive a diagnosis?

Luker: So about a year ago, (on March 11), which happened to be the day the World Health Organization declared COVID-19 a pandemic, I was also diagnosed with stage 4 diffuse large B-cell lymphoma. And I was 24 years old at the time. I was a Division 1 athlete at the University of North Carolina, and health and fitness were at the forefront of my mind throughout my entire life. So to hear the word “cancer” was heartbreaking and mind numbing.

Given my history of having such a healthy lifestyle, it really shocked my family. It is not something that runs in the family; I have no extended family members or immediate family members who have ever had cancer, so (this was) news to us.

And the symptoms I was having before I was diagnosed were really unsubstantial. I had a few body aches here and there, and they were pretty severe, but nothing that alarmed me or anyone around me. And I only had two occasions of night sweats. So for me to be at stage 4 with such a limited amount of symptoms — again, massive shock to myself and my family.

I found out through a biopsy that my dad encouraged me to get. He is, ironically, in the pharmaceutical business and sells a drug for classical Hodgkin lymphoma. So I had the most knowledgeable expert closest to me, and he was the one to say things aren’t adding up. And even though my blood work and my scans came back normal, he was the one to push for a biopsy. I attribute almost my life to that moment when he said I (should) follow through with more screening and testing — because without him, I could have let this go on and it could have cost me my life.

On March 11, (2020), I received a diagnosis, and one week later I started my six treatments of R-CHOP (Rituxan or rituximab, Cytoxan or cyclophosphamide, Lipodox or doxorubicin hydrochloride, Marqibo or vincristine and Pre-Mild or prednisolone). I was having this chemotherapy regimen every three weeks, which totaled ... five months. I did not undergo any radiation. And one of the biggest hurdles I faced as a young female was the inability to freeze my eggs. I had only a week or two from the initial diagnosis to my treatment day. ... So that was really difficult, and I still don’t know how my fertility was affected. But five months later, after six rounds of treatment, I was put into remission. I have had three clear scans now and have my fourth in a week.

What went through your head when you heard the word “cancer”?

I remember the night like it was yesterday. I was walking home from work, and I had just told myself, “I’m going to stop at the grocery store.” I had forgotten that I was going to get a call from my oncologist with my biopsy results. It had been 10 days (since) my biopsy, and no one said the word cancer. People even said, “This is just you guys being extra cautious.” ... So I was by myself walking home (and) ended up missing the block (for the grocery store) and said, “I’ll just go back another time.” I walked through my apartment door. I was by myself. My roommates weren’t home. I heard the phone ringing, and I was like, “Oh my gosh, I totally forgot, I had this call.” I walked into my room, and I remember looking outside the window. And the moment I heard my doctor’s voice, I knew.

I had to patch in my family members ... because they were not with me. And he didn’t say anything other than “I have really tough news, Nina. Your biopsy came back, and you have non-Hodgkin lymphoma.” And at that moment, I sank to the floor. I put myself on mute, and I couldn’t tell you a single thing that was said after that — except for the sounds of my mom and my dad just trying to process through teary-eyed, muffled sounds. So that word “cancer” at that moment was the most shocking word.

Once you got that news, what was the next step?

The next step was finding out what stage I was at. I had to go through a PET (positron emission tomography) scan after my biopsy, and I was told that this could be really early on, given that I had nearly no symptoms. So again, I was set up to expect better results than I had. I was immediately put into an appointment for a PET scan, and that day, I would find out that I was stage 4.

Now, knowing nothing about cancer and having had no cancer in my family, stage 4 to us at that moment was a death sentence. On top of hearing “You have cancer,” it was stage 4. The news was exactly the opposite of what we had expected. So I quickly had to understand (that) stage 4 non-Hodgkin lymphoma is a different type of severity than other cancers and that this is treatable. I was given a 66% chance of surviving, and in most cancers, that’s a very good number.

But to be given a number is nothing I would ever want for another person because it feels like that number controls you. And that feeling is the worst feeling in the world.

What was treatment like? Having to go through that at the beginning of a pandemic had to affect how treatment went and even how you went about finding treatment.

I had the best resource by my side. I was set up immediately with the most incredible doctors at Penn Medicine and had an amazing support system behind me. And a week later, I would start my R-CHOP treatment.

Now I was the only person who could go into every single doctor’s appointment and every single chemo session. And as a 24-year-old who honestly (didn’t have) a single word to say because I didn’t know what was going on ... It was setting me up for not success. And this was no one’s fault, other than the timing of this being a pandemic. So I would call in my parents and have them on speakerphone with me during doctor’s meetings and appointments and during my treatment, which would typically last seven to eight hours. It was me, myself and I with my nurses.

Not having someone by my side actually was a relief to me because I didn’t feel like I had to entertain them while I was going through something that my body just couldn’t handle. I had really bad allergic reactions to all of my medications every single time. So to have someone else’s fear and worry plastered on their faces while I was going through this probably would have actually made it more difficult. So ... not having the closest people in my life by my side was extremely difficult, but at the same time, I was able to focus on the one thing I could — and that was myself.

Eventually you turned to social media to chronicle your story, and now you have more than 200,000 followers on TikTok. How would you say social media has helped you through not just the pandemic but also cancer?

I could go on and on about this. And before this, I would have said social media is kind of fluff, both Instagram and TikTok. There’s not a lot of authenticity, not a lot of vulnerability. And I can say confidently now, that is totally not the case, especially for myself.

My goal was not to become this widely known person. My goal was to document in a video setting my story so I could look back and see what I was feeling, what I was going through and kind of what I looked like through the process. It ended up being the most natural and authentic way for me to share, and people immediately gravitated to my story.

I’m someone who is always positive, and I have a demeanor that looks at life like a glass half full. So for me to bring that into my cancer journey and document it in a way that was real positivity mixed with raw emotion ... I don’t know if there’s another person who has touched that. And I was able to do this in a way that was short and sweet.

And I could reap the support from each of these strangers who gave me everything. I mean, I would get ... hundreds of messages a day from people saying, “Your story has touched me,” “I had a loved one who went through this,” and “I’ve shared your story, and it’s given them optimism and hope” or “I myself am going through this, and I’d love to lean on you for some emotional support because we’re going through the same thing.”

To know that you’re making a difference while going through something so tragic makes you feel grateful (about) what you are given.

Your post that you’re cancer free back in August has more than 350,000 views. What was it like sharing that news with all of these people? What kind of support have you gotten since then?

It’s a bit interesting. When I post on TikTok or on social media, I do it in a way that is immediate — this is how I feel. I don’t edit anything. So I just put up what I was feeling, and then I closed the app and let it sit and really focused on myself because I was just overwhelmed with emotion — excitement ... mixed with fear and happiness. And all of these messages came flooding in.

So it was a lot. I’ll be honest, it was both the most miraculous thing I had but at the same time, there were a lot of eyeballs on me. And it put a lot of pressure on. Whether you can control what’s going on or not, it’s still pressure that you want to share your life. And this was my life. This was life or death. I wasn’t sharing that I got a new job. I was sharing that my life could keep going. And that is a very powerful thing to put into the universe. So I didn’t take it lightly. And to this day, I still get messages all the time and opportunities to speak to people who need that support. I just find it to be, I think, the purpose of why I’m here and why I was given what I was given.

Now you’re working as an ambassador with the Lymphoma Research Foundation (LRF). Can you tell me little bit about that?

It was through social media that they found me, and they are a large community. Unfortunately, this is a disease that touches millions of people. But to have a community like LRF, who gave every ounce of support, encouragement, resources, mentors, workshops ... They provided me with a group of like-minded individuals who understood what I was going through. Not a single other person in my life could actually relate to what was going on in my body and my mind. And they gave me that port. They found me organically through TikTok, and I ended up becoming an ambassador thanks to the power of what I was expressing.

What kind of work are you doing with them as an ambassador?

I’m super early on. I was onboarded about a month and a half ago as an ambassador. So I’d be lying to say I’m doing all of these extravagant things. But the hope is to not only raise awareness for LRF but also to be a spokesperson on the resources and show that optimism and cancer can share the same dialogue. I see such a massive opportunity to be a spokesperson that shines light in the most vulnerable way on what cancer means. And as a young female, I hope no one my age ever has to go through this, but it’s likely they will. And to be able to turn to someone who’s gone through that journey and to have a community supporting you is my hope and ... the hope of LRF.

What advice do you have for someone who may have just received a diagnosis?

Advice is a very difficult thing. I sometimes steer clear of trying to give my opinion on how to feel because when you’re given something like that, no person is going to handle it the same. But there are a few things that I did in my life and that I changed that helped me for the better. I can share those and hope that those encourage others.

A few of them are creating a daily movement and exercise routine. And I know a lot of people might (ask), “Why are you doing that? You can barely get out of bed,” but it gave me something to look forward to that would strengthen my body.

I also created a nutrition and diet (routine) that would support my body. I took away sugars and made sure I was eating whole natural foods, which actually encouraged me to start my own vegetable garden. So, I poured my entire love into this garden that was at a community-supported agriculture (a farm operation that is supported by shareholders within the community, who share in food production) nearby. And I was able to meet new people and escape into nature and do something that really filled my heart.

And then lastly, being able to connect with people was the single most important part of my journey. And I would go on Zoom calls with my friends and bake muffins or make dinner with them. I would do arts and crafts with friends, like I was a kindergartener. And being able to have that face-to-face experience, whether it’s over a screen or in person, gives you strength and makes you feel normal again. And feeling normal as a 24-year-old was extremely important to me. And it really took all of those pieces to help me get through what I did.

How would you say cancer has changed your outlook on life?

Cancer was probably the most difficult, yet most enlightening, experience of my life. And so, I (say this) and it’s a little, not gruesome, but what I was able to experience was as if I was living in my own funeral. I was able to hear and see the support as if I had passed away, but I was alive. And not many people get to see the impact they’ve made on other people until they’ve passed. Yet I got to see that and I got to feel it for five months into present day.

So the perspective I have is a sense of gratitude. If I could go back and change my life, I would keep cancer in the mix. I would keep it because I have become a person who is more aware of what brings them joy (and) is more able to see the simple pleasures in life and to treat people with the utmost respect because you don’t know what they’re going through.

Is there anything that we haven’t touched on that you think our audience might be interested in hearing?

Well, there’s one thing. If you or a loved one has received a diagnosis of a life-threatening or not even life-threatening disease — it does not have to be cancer — there are a few things that I learned that really helped me, because not everyone knows how to help support those going through hard times. And one of those is checking in regularly (with those who receive a diagnosis) but not expecting a response. This is something that people take personally, and everyone expects the same treatment of getting all the updates, hearing how they’re (the person who has been diagnosed) doing. But when it comes to something so severe, they’re (the person who had been diagnosed) getting inundated with questions.

So to offer that love and support and say, “I’m here and I’m thinking about you, but don’t feel as though you need to call me and give me all the updates” is a huge burden lifted from the person going through this. This could be virtual. It could be in person.

Also, try not to ask every single question (about) what they’re going through, and really try to make them feel normal. They don’t want to be talking about every single hard thing that they went through that week. Even though there’s curiosity behind the scenes, there is a time and place to discuss.

And lastly, just be open and listen without trying to fix the issue. No one has the right answers, and if you can listen and be in (the present) with them, that is enough.

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