Nina Luker

It’s not every day someone gives you a percentage of survival or a certain amount of time left in your life. Those conversations are unusual, they feel demoralizing and confusing, it can make you spin into despair.

But sometimes, and I would argue, most times, it brings you into a state of fully living. This conversation puts life into perspective as fast as just about any life-event could do.

When I was diagnosed at the age of 24 with stage 4 non-Hodgkin lymphoma, I was given a 66% chance of survival. Two-thirds of people with my diagnosis live … but all I could think about is 33% that didn’t survive. These are the statistics the doctor shared with me. He didn’t give me the statistics of a 24-year-old athlete, who exercised every day, ate well, and had the strongest self-will compared to most of her counterparts. Those stats did not reflect Nina Luker’s life, and yet they were still given to me — slapped across my face like I had misbehaved in school.

I remember the day vividly. I got this statistic right after my first PET scan results came back. The doctor shared my cancer was stage 4, spreading into my lungs, liver, lymph nodes, knees, etc. I was sitting in our family room, with my mom, dad and golden retriever by my side.

The words were echoing out of the phone as if the doctor was talking to the wrong patient. None of us spoke. I had my hands covering my face. I could feel my heart rate rapidly increasing, the burning sensation in my chest, the subtle shake in my hands and feet. The call ended and we all collapsed. Keeling over the couch with our bodies tightly compressed. The world stopped.

It’s in this moment, you are forced to stand face to face with death. This is the moment in time when life shifts. You are forced into a vortex of competing priorities. Who are you going to call, how are you going to spend your days, how are you going to find joy, how do you wake-up each day and find the silver linings? These are not easy topics to come to terms with, but you have no other choice. Until you are faced with death, these topics rarely come into question.

It’s crazy to write this, and even crazier to share this statement with an entire community of people who have some connection to cancer, but that day, my life shifted in the most positive way. I had to choose one of two paths, to become the victim and let the disease control me or take control of the disease and fight for my life. The moment I chose to fight was the moment life opened all its beauty.

Those days following the news, I would wake up and look out my window to find the sun shining through the trees, wildflowers popping through the earth, the sweetness of a home-grown vegetable, the feeling of cold water running through my toes, the sounds of birds chirping as if I was living in their amphitheater. Life started to slow-down and my mind became more focused on the good. The little moments each day that put a smile on my face, the small wins that began to build on one-another. The sound of a loved one’s voice through the phone, the small gestures of kindness from strangers, the soft back scratch from a parent, a calming melody echoing through the doors, or even a laughter from an immature joke. These were the moments to live for.

I made a promise to myself when I was first diagnoses that I would do two things: No. 1 journal every night and No. 2 get outside to walk or lay beneath the trees. Those two non-negotiables changed the trajectory of my treatment. It let my mind and my physical body escape into a different dimension. These two parts of my day made it so I could tackle the unknown. I could sit with my thoughts and find a space to contemplate the priorities. I was able to put myself first and really tap into whatever was needed at that moment. My world slowed, my mind began to become clear, and I started to believe that no matter the percentage I was given, that number did not stand a chance with my strength and pursuit in recovery.

Sometimes it takes something tragic to get to this point, but I wonder, what if we all started living with the understanding that we are all going to die. We understood that life is short and that we must keep things slow, find spaces of calmness and reset priorities. Now that might just be the best gift you could ever give yourself.

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“I had to choose one of two paths, to become the victim and let the disease control me or take control of the disease and fight for my life. The moment I chose to fight was the moment life opened all of its beauty,” writes a lymphoma survivor.

When Faced With Death, Live Life to the Fullest, Says a Cancer Survivor

As someone who publicly shared their cancer diagnosis, I get a lot of questions about how to care for loved ones who are also going through health-related challenges. We don’t learn this topic in school, we rarely see topics on this subject, and yet for every single diagnosis, there are at least five to ten more people who are captured into the caregiver role.

I want to start out by saying that each relationship dynamic to the patient is going to be different. This is not a conclusive or exhaustive list of ways in which to provide support. This is my version, that worked best for ME in ways that my family/friends/ strangers gave me the safe space to fight and survive.

I’ve gone ahead to bucket these communities as each have special places within our lives.

I can confidently say (as a patient), that having a family member with a diagnosis (especially if that individual is their child), is harder for the family member than it is on the patient. The parent, spouse, sister/brother, cannot do anything. They have no control over the matter. They must watch from the sidelines and hope that the end result is positive. The number of times where one of my family members murmured, “I wish I could take this diagnosis from you, so I could fight for you” was very high.

This lack of control can bring a spiraling effect into the equation. Because the family member cannot control the outcome, they get frustrated, intimidated, they might over-extend their services and is some worse cases completely shut down. There are a lot of different ways in which families react to trauma.

What are some of the common ways in which family can provide a safe and nurturing support system?

Start the day with a smile, no matter what.

 I could write a book on this topic. The power of a smile can be the simplest and most effective way to show love and security. Even on the hardest of days, when things seem to be going wrong – lead with a smile.

 It is scientifically proven that laughter lowers cortisol levels. Cortisol levels are your stress response to what is happening in your environment. With a quick laugh, those levels can be decreased, and an entire mood can be switched.

I used humor as a way to cope. I joked about my diagnosis, my bald head, the perks of being a cancer patient all the time. It allowed me a release a sense of darkness and brought humility to the equation.

 Whether it’s a note that reminds someone that you’re thinking of them, a flower you picked up and placed in a vase, a yummy smoothie that you crafted, a foot or back massage to ease the tension, reading a book aloud, etc. these simple and seemingly insignificant gestures can bring a deep sense of love and compassion into a day that doesn’t feel so positive.

 This goes for all the communities. Be a safe haven to listen and respond with curiosity. It’s not fun to talk about the diagnosis, but in the right time, in the right place it’s an opportunity to express the thoughts that are running through your mind. To allow for you to be raw and unapologetic.

You do not need to have an answer or a solution to the problem, listen, nod and make the patient feel as though every emotion they are feeling is valid.

 It’s not fun to play patient all the time. It’s refreshing to feel as though you are the same person you were prior to your diagnosis. The endless pity party helps no one and reminds the patient they are sick.

 It can be demoralizing when someone can’t do an activity they once could do in their sleep. In a gentle and empathetic way, set new standards of success. If a patient wants to cook everyone dinner, suggest if you can make it a team effort. If a patient is looking to go for a walk, suggest something that feels doable and realistic. One of the worst feelings as a patient, is feeling like you let others down. It can feel as though your entire life is one big let-down to your family, so help set realistic goals that make it feel as though everything is a success.

When you get on the phone, please do not ask “How are you doing?” Rather, ask “How are you doing 

 This small adjustment (asking how they are doing that day) completely changes how the answer is address. It can be intimidating to answer a broad question such as “How are you doing.” It is also the most common four words you’ll likely be asked as a patient. By giving a specific timeframe the patient can open up and provide real insight on how today is going vs. yesterday or the day before. This then promotes a conversation that can provide actionable steps in best supporting their needs at that time.

 It’s easy to check in during the milestone days of an individual’s treatment. Whether it be a chemo day, a surgery, scan, etc. It’s the days that don’t bare any significance where a friend could really make an impact. On those days, where routines are dull, movement feels at a standstill, check in and provide some light into their day.

. Try not to talk about the diagnosis. You may be curious and want an update, but if the patient does not voluntarily share – do not press. It was helpful for me to have a friend call to update me on something that felt ‘normal’ rather than a check-in. I wanted to hear the boy drama, the new adventures, the work gossip.

 In a patient’s world, finding exciting activities to fill up their day can be extremely challenging. In today’s world it’s even more isolating with COVID-19 and immunocompromised systems. Plan a virtual activity – whether it’s a craft, book club, learning a new skill, playing a board-game, having a fashion show, building a piece of furniture – the ideas are endless.Pick something that seems exciting and schedule a virtual date to partake in that activity together.

 One of the most memorable things a stranger did for me was slip me a post-in notes that said, “You’ve got this” written on the front. It was the smallest and most simple act of kindness, and yet it was a moment that will never forget.

In the right situation, share your own story or loved one’s story of success.

 This suggestion is a “once-every-so-often” one, but after meeting someone knew, if the patient opens up and share their health-related concern, share positivity of someone who fought and survived. This positive reinforcement can result in a wake of optimism that leaves the person hopeful in their recovery.

As I mentioned, these suggestions are small, they are actionable, but they take thought. When interacting with a patient, be mindful of two things – your body-language and your words. Listen more than speak, provide a safe place for emotions. Most importantly, make room for connection. The worst part of having a diagnosis is the feeling of being alone. If you can help change that feeling, you have made a positive impact.

A cancer survivor offers tips to family, friends and strangers on how to support those with cancer.

How to Brighten a Cancer Survivor’s Day

By way of introduction, my name is Nina Luker, I’m 25 years old and was diagnosed with stage 4 DLBCL in March 2020. This month marks a year since I found out I was in remission. There’s a lot to unpack in those two sentences. The biggest being, I was forced to have an identity shift at a time in my life that I was not mentally prepared for.

On March 10, I was a 6’1, blonde, female athlete, living in New York City, traveling the world and smiling every chance I could get. One day later, on March 11, 2020 I was the girl who had stage 4 cancer. Yikes. If that isn’t one of the biggest identity shifts you could find, then I don’t know what is.

In a matter of hours, at the young and naive age of 25, I had to come to the realization of a few things:

I would no longer live a “normal” life

Everything in my life that previously was important no longer took precedent.

These realizations made me pause and think; I only have one choice, one responsibility and one goal – to survive.

When survival became my identity, things began to shift in my life forever. My family and friends looked at me differently, my community called me a hero or a warrior, I become labeled as brave or a badass. These are not bad things – do not get me wrong, they are quite the opposite, but what no one really thinks about is that was my only choice. I did not choose to be strong or influential; I had no alternative option or else we would die.

Fast-forward a year, I walked out of my last day of chemo. The final beeps of my IV telling me I was done left tears in my eyes. For the last six months, I was the bald girl who was fighting cancer. That beeping noise ended that chapter. That was the moment I started to walk away from the identity of a cancer patient and began walking into the identity of a survivor.

There’s a lot of focus on cancer patients during their treatment. It’s the climax of the story. Everyone wants to pitch in and share their love and encouragement. But the hard thing with cancer is there is no “end of the story.” There is no happily ever after. Even if you’re deemed in-remission, the word “cancer” permeates your thoughts. It consumes your psyche with every symptom, headache, body ache, night sweat or trigger.

Being a year out from my diagnosis, I struggle with a lot of internal questions.

I’m alive, what should I do with my life?

I need to make a difference in the world because I was given a second chance to live.

How do I fit back into the normal culture of 25-year-olds after an experience like that?

What does this mean for my future? Can I live a life of normalcy?

Survivorship is challenging. It ebbs and flows in both gratitude and dismay. Becoming a survivor doesn’t mean that this part of your life has ended. It means that each day, you walk through life with a sense of presence and a slight glimmer of what once was will always be. We are all survivors of our own stories, but how do we take that experience and walk through life in a way that seems authentic to the new us. Does that mean quitting your job pre-cancer and finding a new passion? Does that mean moving to a new city, exploring a new passion, breaking off some old relationships? It can be quite intimidating to have to use your second chance wisely as if everyone has eyes on you.

I frequently struggle with the internal question, am I doing enough? Am I being a grateful survivor, and I giving back to the world? Though I keep coming back to the realization that my experience, does not define me. That is not my identity. My greatness lies in the power of how I treat myself and others, not the life events that have since happened.

Survivorship brings questions, it’s not supposed to be easy, it’s not the end of a chapter, but it’s the start of a new way in giving yourself peace and time to mold a version of you that has always been present – not matter the external factors.

“When survival became my identity, things began to shift in my life forever,” writes a blood cancer survivor.

What Does It Mean to Be a Cancer Survivor?

In March 2020, at the age of 25, I was diagnosed with stage 4 diffuse large B-cell lymphoma. I was two years out of college, a division 1 athlete at UNC-Chapel Hill, living in New York City. I had a great career, worked out every day and kept my eating as clean as possible. All of these pieces of my life had added up to grant me the feeling of being invincible. This naïve perspective was disrupted in a matter of hours.

It was on March 11, 2020, I had been feeling a few abnormal symptoms for the last three months: body aches, fatigue, two occasions of night sweats and one experience of chest pain. These symptoms did not set off an alarm in my mind, but what I could feel was that something was not right. As someone who is very attuned to their body and limitations, I was aware my body was trying to tell me something.

On Feb. 28, I called my father to express what I was feeling, and it was apparent he had a few concerns with what I was telling him. He recommended I go to the ER in NYC to get checked out. I stepped into an Uber at 8 pm and checked myself in. If I could pinpoint a night that was the most challenging, it would have been that evening. I was all alone in the ER was full of people; I had fear and pain pulsating through my body. I would eventually get a CT scan a few hours later to see if they could find anything. I would wait and wait and wait. Around 4 am the doctor came back and said my bloodwork and scans were clean. I was dumfounded. I felt like I was the kid crying wolf. I knew at this point that something had to be taken into my own hands.

This is where my tipping point came. I knew I needed to have more answers. I needed people to listen to me and understand what was going on in my body and mind. At 4 am, once my results came back clean, I called my dad again. I told him my thoughts, I expressed what had happened and the two of us took matters to the next level. He drove from Philadelphia directly to NYC Langone ER and pick me up to take me back to Philadelphia, but we did not go home. He took me straight to Penn Medicine to get a biopsy.

In this moment, no one was telling us to get one. We made a few additional calls within the oncology network and had a sarcoma doctor requested a biopsy. The last thing I wanted was to get a biopsy. I was scared I was taking this too far for nothing. I knew how expensive these were and the fear I was causing to those who were close, but I did it anyway. I received the biopsy on March 1 in the care of Penn Medicine, 20 minutes from my childhood home.

Two days later, I went back to NYC to continue working. I didn’t have much fear associated with the biopsy, because the word “cancer” never was mentioned. I knew I was taking extra precautions, but the gravity of the situation was not apparent to me. Ten days after the biopsy, I received the call, alone in my NYC apartment, staring outside the window on the 26th floor overlooking downtown Manhattan. I heard the doctor’s soft tone, “I’m so sorry Nina, the results came back. You have lymphoma, a type of blood cancer.”

My world stopped. It couldn’t be true. I couldn’t believe what was just spoken. My parents, who were patched in the phone call went mute. I could hear the cries of my mom in the background. I could hear the fear in each word that was spoken aloud. I sank to the floor, put myself on mute and went into a state of trauma.

Two days later I found out through a PET scan this cancer was not detected early on. I was stage IV, the most severe and life-threating you can get with cancer. The cancer was present in four of my organs and multiple lymph nodes. I kept thinking to myself, “how long have I had this? What if I didn’t ask for help?”

I share this story, not to scare or place irrational fear into the minds of others who have had funky symptoms, but to share the power of using your voice when you are not deemed the “expert.” During these few days, I was surrounded by some of the most reputable and intelligent individuals in health care, and yet, I wasn’t receiving the answers and priority I needed. Instead of crawling into a closet and hiding away my thoughts and fears, I spoke out. I made it clear to my family and trusted allies, that something was not right. I needed help and I pushed for it. If I had not pushed for that help, then I could very well not be here today.

If I could recommend a few ways in advocating for yourself I would share this:

Write down what you are feeling. It’s hard to express fear and pain, especially when you are experiencing it. Grab a pen and paper to help jot down simple words you can recount and use as “evidence” to what is going on.

Ask for help. Use those closest to you, to help advocate on your behalf. It could be as simple as having them on the phone calls with doctors, re-instating what you are feeling and providing more context when asked questions.

Allow yourself time to sit with what you are feeling, whether that is through meditation or another inward way of thinking. This is powerful beyond comprehension. It allows you to observe and become aware of what is happening.

Trust yourself. This is easier said than done, but at the end of the day all we have is ourselves. You have every right to make decisions that are in your best interest, even if you don’t know if they are.

Be gentle with yourself. We all deserve to feel protected, safe and loved. While trying to find your answers, give yourself extra room for compassion. What you might find is that all you need, is some inner confidence to help rewrite your story.

Nina Luker, a healthy 25 year old, felt invincible. But she says that "naïve perspective was disrupted in a matter of hours."

Nina Luker

When Faced With Death, Live Life to the Fullest, Says a Cancer Survivor

How to Brighten a Cancer Survivor’s Day

What Does It Mean to Be a Cancer Survivor?

Survivor Offers 5 Tips on Becoming Your Own Advocate

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