From Confusing Symptoms to Motherhood and Advocacy: Taja’s Polycythemia Vera Story
Living with polycythemia vera, a rare myeloproliferative neoplasm, changed Taja’s path entirely. She was diagnosed in 2015 after fainting spells and abnormal lab results. For months, doctors dismissed her concerns, telling her she was too young for cancer. By tracking her own labs and bringing them to a clinical director, she finally received the correct diagnosis.
At the same time, Taja was caring for her grandmother with pancreatic cancer. Experiencing illness both as a patient and a caregiver shaped her belief that gratitude reveals hidden beauty, even during pain and uncertainty.
When told she could not safely become pregnant, Taja and her husband sought specialists and pursued IVF (in vitro fertilization) during the COVID pandemic. Their efforts succeeded and they welcomed their daughter, Miracle. Afterward, her disease accelerated and she underwent a bone marrow transplant with her father as the donor.
Though the transplant caused ongoing side effects, Taja chooses to use her voice through Miracle Circle Hands, an advocacy group that supports people with invisible illnesses. Her hope is to show that even in hardship, life can still offer light and connection.
Key Story Takeaways
Self-advocacy can be life-saving when symptoms are overlooked or dismissed.
Gratitude became Taja’s core practice, helping her find meaning through illness.
IVF gave her and her husband the chance to welcome their daughter, Miracle, despite doubts from doctors.
The bone marrow transplant brought difficult side effects but also a path forward.
Taja transformed her experience into advocacy, creating support networks for others with invisible illnesses.
Name: Taja S.
Age at Diagnosis:
23
Diagnosis:
Polycythemia Vera (PV)
Symptoms:
Chronic fatigue
Fainting
Stroke-like episodes
Elevated hemoglobin, hematocrit, and platelet count
Treatments:
Emergency surgery for ruptured cyst & bowel obstruction
Chemotherapy
Radiation
Bone marrow transplant
Thank you to PharmaEssentia for supporting our independent patient education program. The Patient Story retains full editorial control over all content.
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
Friends and family describe me as compassionate, caring, and someone with a giving heart. I am very concerned about others, often less about myself.
When My First Symptoms Started
During my junior year of college, I was working two jobs. I was feeling off and not feeling like myself. I had multiple visits to emergency room doctors, primary care doctors, and a GI specialist (gastroenterologist).
The GI doctor wasn’t concerned about any gut issues, but he pulled up some lab work and he was extremely concerned about my red blood cells, my hemoglobin, my hematocrit, and my platelet count. At that time, I was working for the bone marrow transplant unit at a children’s hospital, which was pretty amazing and is why I’m where I am today.
My numbers were extremely high and very alarming, so I went to my primary care doctor and said, “I went to my GI doctor and he was extremely concerned.” But she blew me off, said that I was too young, and that there was nothing to worry about. She said it was probably an infection, so she would put me on antibiotics and I should be fine, and everything should level out. Afterward, I went back to my daily routine of going to school and work.
Then I had a car accident where I blacked out, which was alarming and extremely concerning. It wasn’t like I was deprived of sleep or it wasn’t my routine. At that point, I took it upon myself to do some research within my chart. I pulled some labs and got a visual of exactly what I was dealing with.
I was a health unit coordinator and doing a clinical rotation for social work. I brought my labs to the doctor, and then she looked at me and said, “You need to leave right now. You need to go see my husband,” who was also a hematologist. One of my coworkers took me straight to see him. He looked over my labs and gave me an idea that something was definitely going on, but he wasn’t quite sure what. But he drew some labs, did a full work-up and a week later, on February 14, 2015, I was diagnosed with polycythemia vera.
When Life Throws Everything at You at Once
My grandmother was diagnosed with pancreatic cancer around the time that I was diagnosed. At that time, her diagnosis was considered to be a death sentence. They told her that she had six months to live. But I took it upon myself to be there for her as much as I could, even while being in my last year of college and trying to be there for my family.
I was experiencing headaches and feeling fatigued. I couldn’t figure out what was wrong with me. I felt completely off. I was having fevers here and there. I was also having itchy skin and redness. Showers would bother me. I was getting extremely frustrated. But outside of that, I was so concerned about my grandmother and being there for her. I didn’t feel as if my family was on the same page, so I found myself overextending myself to make sure that I was there for my grandmother.
She was planning on retiring soon. One day, I noticed her eyes were yellow, so I asked her, “Why are your eyes yellow? Have you been at work all day and no one told you your eyes were yellow?” We were supposed to go to a family outing and I said, “No, we’re going to the emergency room.” Within that hour or two of being in the emergency room, she was diagnosed with pancreatic cancer.
Could I Start My Own Family?
I was told that pregnancy wasn’t an option and that I shouldn’t get pregnant because it wasn’t safe for me. At the time, research studies were very limited, so I didn’t have much information on what would happen if I were to bear a child. I got a second opinion at the hospital where I was at the time and they told me the same thing.
I went to my hematologist at the time because my fiancé and I were discussing it with her. After all, we were concerned about having children and we both wanted to have children, but she was totally against it. She said, “No, I don’t advise it.” She was so concerned.
I don’t think there’s enough conversation around reproductive health when it comes to women who have either had cancer or have been through cancer treatment. There are options.
My husband and I are faith-based people and understand that God has the last say. We went and did our due diligence and research, so we went to a reproductive specialist to get a second opinion. They did share some concerns with me about having children, but it wasn’t impossible, so we went through the IVF process. They told us, “This usually doesn’t happen on the first try, so don’t be upset if it doesn’t happen for you,” and put an emphasis on that. Knowing who God is and my relationship with God and how I’ve always tried to align who I am with God’s purpose, I put it in His hands.
We started the IVF process and did it during the COVID-19 pandemic, so a lot of the things were done at home. My husband and I did the process together, which was pretty amazing. He did all my shots and went to all the appointments.
After they did the implantation of the embryo, two weeks later, I found out I was pregnant.
Navigating My Pregnancy While Having Cancer
What’s funny, which I thought was eye-opening, was that during my pregnancy, my condition became dormant. I had no symptoms of polycythemia vera. All my numbers were normalized, which was pretty cool. I would go in weekly for labs and everything was normal throughout my pregnancy. No issues at all. No signs of stroke and no headaches. All I had were the typical pregnancy symptoms.
First, they told me that I couldn’t have children. Then, I had her, but I went through a traumatic experience of having a cyst rupture while six weeks pregnant and in the midst of COVID. Then they told me that our child may not live through the procedure. Her making it to this world was the main reason we call her Miracle. And she’s every bit of her name.
My Disease Progressed After Having Our Baby
Right after having our daughter, Miracle, my disease went haywire. Weeks after giving birth, my numbers skyrocketed. My platelet count was in the 2 million range weekly. They were also doing plateletpheresis (a procedure where platelets are separated from whole blood and collected) weekly. At the start of the week, I would have plateletpheresis and I would go down to a normal range, but by the end of the week, my platelet count was back to 2 million.
At that point, life-threatening things could occur. My hematologist said, “There’s no other option outside of having a bone marrow transplant.” He wanted me to understand exactly what would happen.
They started the process of preparing me for transplant, but mentally, I thought that we should probably speed it up. They felt that as well because my platelets continued to be in the 2 million range and a high number of platelets can cause clotting. They said that my blood was like syrup. Whenever they would draw blood for my labs, it would clot in the tube, which created an issue for them as they needed to do my labs weekly and had to repeat draws over and over.
Making the Decision to Do a Stem Cell Transplant
I had no options other than a stem cell transplant. I wouldn’t wish it on anyone. Being a person of color, I had no donors. There were no matches.
I had my bone marrow transplant at 29 years old. Having a transplant at 29 came with many uncertainties, especially not knowing whether I would ever be able to have children. Thankfully, because we decided to do IVF, my eggs had already been retrieved and frozen. However, for many young women who undergo a bone marrow transplant, things move so quickly that there’s often no time to consider fertility preservation.
In my case, if I hadn’t had Miracle when I did, I wouldn’t have had the chance to freeze my eggs at all. My only choices were to proceed with the transplant or not survive. My experience taught me how crucial it is for women to take charge of their reproductive health early in life, because without that foresight, I may never have had the option to have children.
After I had my transplant, my body was thrown into menopause. My hormones are completely shot. I don’t have a sex drive whatsoever and I’m only 34, which is hard being married. Being a woman, it’s hard for your hormones to be off because you experience moodiness, hot flashes, and irregularities within your body. It’s extremely difficult. I’ve spent a lot of time researching different options, trying to understand what might work best or be most helpful for me.
I will be forever grateful that I was able to have the transplant and that I’m here, but it’s definitely stressful to be in this space now. The uncertainty I faced before the transplant — wondering whether I would survive or not — still weighs more heavily on me than where I am today. I’m extremely grateful that I did the transplant, but it has taken a toll on my mental health. I now try to raise awareness and help others understand the challenges that come with the experience.
Life After a Stem Cell Transplant
During my transplant, I had to go on disability. After a year, like many corporate organizations, they put someone else in my role. I eventually went on full disability and haven’t been able to return to work, as it’s been one challenge after another. However, following my heart and pursuing what I believe I was meant to do led me to create the organizations I now run, allowing me to give back to the community and find purpose again. While I’m a mother and a caregiver, I still feel a deep desire to do more because I believe my voice and experiences have meaning and need to be heard.
In my advocacy work, I focus on starting those uncomfortable but necessary conversations. Yes, the main goal is to save your life, but what happens after the transplant? What does life look like then? I believe those are the kinds of questions that need to be discussed from the very beginning.
From the research I’ve done, I’ve learned that many marriages end either during or after a transplant, which is partly because families and loved ones aren’t given enough information upfront about what to expect. Mental health support is so important from the very start. I truly believe it’s essential to find a therapist, counselor, or someone who can help you navigate those challenges — whether that means starting antidepressants or just having someone ready to talk about it.
During my transplant, I was on antidepressants and even then, it was very lonely. No one really prepares you for that part. You feel completely isolated because no one can truly understand what you’re going through except for another patient. But since you’re immunocompromised, you can’t even connect with them in person. I lost a lot of friends during that time; they just disappeared and no one warned me that might happen. Honestly, there should be a survey asking, “After your transplant, what did you go through? How did you feel? What could we do differently?”
Right now, I’m focusing on helping others in the community, not just myself. I previously had an organization called “Invisible to the Eye,” but I’m now in the process of creating “Miracles Circle Hands.” This new organization is all about building advocacy in the community, not only for those living with invisible illnesses, but also for seniors. I’m dedicated to speaking up for those who can’t advocate for themselves.
I named the organization after my daughter because she’s truly been our miracle. The “Circle Hands” part represents the idea of coming together — when you’re advocating for people, you’re out in the community connecting resources and joining hands to make sure patients, loved ones, or anyone in need gets the support they deserve. To make that possible, we have to create a safe space where people feel comfortable being vulnerable and sharing what they’re really going through. Unfortunately, many individuals are taken advantage of — whether because of illness or age — and I want to be someone who steps in to help. My goal is to show families, loved ones, and people in the community that they’re not alone, that someone truly cares, and that there are resources available to help them find their way.
My Message of Hope
My hope is simply to wake up each day. I hope to pour back into others and to do what My Father did for me: give someone else another chance at life, something I’ll always be grateful for. I remind myself every day that the more grateful your heart, the more beauty you see, and I truly live by that. Even though I face challenges, I’m thankful to still be here. The more gratitude I have, the bigger my heart feels, and the more I can give back to my community and serve others. I also want people to know that there is light at the end of the tunnel. Yes, there are ups and downs, but that’s part of life. And when you finally reach that mountaintop, you realize you’ve triumphed. I was told many times that I wouldn’t still be here, but I am.
Thank you to PharmaEssentia for supporting our independent patient education program. The Patient Story retains full editorial control over all content.
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
How Tabbie Faces Stage 4 Neuroendocrine Pancreatic Cancer at 25
When Tabbie first heard the words “It’s cancer,” she was just 25 years old, full of energy, and living her life in the Bay Area while working at a hospital. She didn’t think she had symptoms. After all, who wouldn’t feel tired after working long night shifts and driving an hour and a half home? But after a sudden, sharp abdominal pain that grew worse by the day, she decided to seek medical care, a decision that changed everything.
At urgent care, the pain was so severe that even a gentle touch was unbearable. After multiple scans, doctors discovered tumors in Tabbie’s pancreas and liver. Soon, the diagnosis became clear: stage 4 neuroendocrine pancreatic cancer. Hearing that news was devastating, especially since a close friend had recently died of cancer. Tabbie’s first thought was, “I’m going to die,” but she quickly realized that she didn’t want this diagnosis to define her.
What makes Tabbie’s story especially powerful is the way she leaned into humor and positivity, even in the darkest moments. She cracked jokes with her nurses, tried on wigs for fun before chemo, and kept her spirit alive by staying connected with friends and support groups.
Still, the weight of decisions was heavy, especially when her medical team talked about freezing her eggs. At 25, Tabbie never thought she’d be injecting herself with hormones to preserve her fertility, but she chose to embrace the process and hold onto hope for the future.
Preparing for her first chemotherapy treatments was overwhelming. Tabbie started with oral chemo, hoping for a gentler option, but when it didn’t work, she moved to IV chemo and eventually underwent a Whipple procedure, also known as pancreaticoduodenectomy, along with a liver resection. (Editor’s Note: A pancreaticoduodenectomy, commonly known as the Whipple procedure, is a complex surgery to remove cancerous tumors from the pancreas. It involves removing the head of the pancreas, the duodenum, part of the bile duct, and the gallbladder.)
Surgery was frightening, but she found strength in the fact that her care team was made up of trusted colleagues from her own hospital. That trust, along with support from social workers, nurses, and online communities, became her anchor.
Even after surgery, Tabbie faced challenges like digestive issues, dietary restrictions, and the emotional impact of feeling “different” from others her age who were building families or careers. Despite all this, she continues to choose joy, reminding herself and others to love their bodies, ask for support, and not let negative thoughts take control. She openly shares her experience on social media and in support groups, offering advice to others preparing for Whipple surgery or chemotherapy.
Tabbie’s story highlights not just the medical side of neuroendocrine pancreatic cancer, but the deep mental health impact of survivorship. By speaking candidly about her fears, choices, and resilience, she empowers others to take control of their care, honor their feelings, and know they’re not alone.
Watch Tabbie’s interview or read the full transcript below to find out more about her story:
How Tabbie turned fear into laughter while preparing for chemo
The surprising age when she was told to freeze her eggs
Why she trusted her medical team like family
The hardest part of recovery after her Whipple procedure
How support groups and social media gave her strength on tough days
Name: Tabbie V.
Age at Diagnosis:
25
Diagnosis:
Pancreatic Neuroendocrine Tumor (pNET)
Staging:
Stage 4
Symptoms:
Abdominal pain
Unusual organ “inflammation” feeling when walking
Fatigue
Treatments:
Chemotherapy: oral and IV
Surgeries: Whipple procedure (pancreaticoduodenectomy) and liver resection (partial hepatectomy)
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
I’m a very loving and fun person. You’ll never see me upset because I don’t have that mentality where I need to let people know that something’s bothering me. I’m usually cracking jokes.
About four years ago, I moved to the Bay Area in California and I’ve been working at a hospital ever since.
I didn’t think I had any symptoms
I didn’t have any symptoms, or at least I didn’t think I had any. I work swings, so I go into work at 3 p.m. and get out by 1:30 in the morning. At the time, I lived far from work, about an hour and a half away, so the drive was exhausting and I assumed that’s why I was tired.
But one Monday, I was on a caregiving job in LA for an older woman, which involved lifting her off the chair and putting her anywhere she wanted. She was petite, but I’m also petite. I’m only 4’11. The following day, I called in sick because I had abdominal pain. I didn’t know if I was sore or if it was actual pain, so I ignored it. It was something that I hadn’t experienced before, but I let it go until Wednesday.
I had to fly back to the Bay Area for work and my abdomen hurt a little more, but it was a weird pain because every step I took, I felt my organs were inflamed. When I arrived, I texted my boss and asked if it was okay if I went to urgent care once the following person came in and she told me to go immediately.
I decided to go to urgent care
I was physically at the hospital, but I didn’t want to go to the emergency room, so I went to urgent care. The pain was intense. When the doctor palpated my stomach, he couldn’t even touch me; that’s how painful it was. I thought the worst, like twisted or dead bowels.
He said, “You need to go to the emergency room.” I said, “Do you think it has to do with my bowels being twisted?” He said, “I don’t know, but you need to get a scan done.” The hospital was a five-minute drive, so I went back to where I worked, but to the emergency room. I felt weird because I was in my scrubs, sitting in the waiting room, so people were looking at me.
When they finally took me in, they did a series of scans and asked me questions. I didn’t have a fever, diarrhea, nor was I throwing up. They asked me if I was around livestock or if I had left the country. They were wondering what could possibly be causing my symptoms. They did an ultrasound and that’s when they saw that I had cysts. Then they asked if I had been around a sick dog. My dog has been throwing up for a day, but nothing horrible. They thought that’s what it was and that I had a tapeworm. They decided to do a scan and saw it in my pancreas and liver.
They didn’t tell me that they still thought it was a tapeworm as I got admitted into the hospital. I was speaking back and forth to a bunch of doctors and eventually, one of them came in and said, “It’s cancer.” I didn’t know what to think. It was like how you always wondered. Nonetheless, my mom and my boyfriend were there.
Thankfully, with the type of cancer that I have, I know a surgeon whom I work with and who specializes in Whipple procedures, pancreatic damage, and liver surgeries. I contacted one of the nurses whom I work with. She’s my charge nurse. She said, “This is the doctor you’re going to see.” It worked out for me in the end because I had a care team that knew me and I was able to pick out my team because I worked alongside them.
The moment everything changed
As soon as they diagnosed me and told me that I had cancer, I started crying. That’s a normal reaction for everyone. The first thing that popped into my head was, “I’m going to die.”
It’s still hard to talk about it. How do I explain it? A year before I got diagnosed, I had a friend who passed away from cancer, so that’s the first thing that popped into my head. Obviously, no one should think that way, but, unfortunately, that’s the reality of things. That’s the first thought, “I’m going to pass away.” As time went by, after I cried it out, I realized that I can’t let cancer determine who I am.
Another thing that popped into my head was the thought of losing my hair. Immediately, I got on Amazon for wigs. My boyfriend’s sister loves to wear wigs to style them, so one day, I came over to her house and she said, “This wig would look good on you.”
A whole bunch of negative thoughts popped into my head and I realized: what good is that going to do for me? I’m not that person. I’m not a sad person. I’m always the life of the party. I always like making people laugh in the most uncomfortable situations.
That’s what I did when I was in the hospital. I was waiting for a biopsy on my pancreas and they didn’t let me eat for close to 34 hours. I made a joke to the nurses, which I probably shouldn’t have in that moment. I said, “I guess hunger is going to kill me before the cancer does.” They all looked at me like, “Are you okay?” It’s just a joke. That’s how I cope.
The cancer had spread
I was still admitted to the hospital during all this. On the first night, I had CT scans, an MRI, and ultrasounds. I was in the hospital for three days. They wanted to do a biopsy on my liver, but based on the scans, they saw that the tumors were fluid-filled, so they decided not to mess with them. They went to the pancreas to look at the two tumors there.
I was waiting and wasn’t allowed anything by mouth for the whole day. Finally, they brought me down to get an EGD (esophagogastroduodenoscopy) done, where they put me to sleep, so they could put a tube down my throat and biopsy my pancreas. I got the results the following day. I don’t remember exactly what test they wanted to do, but I knew that the section where they wanted to do the test didn’t run on weekends. I said, “I work at the hospital. It’s not like I’m going anywhere. Can I just go home and be scheduled for whenever I need to do that?” They agreed and were able to discharge me.
I followed up the next week to do the test to confirm the type of cancer it was, which was neuroendocrine. But it was a series of waiting games because initially, they told me it was stage 1. Unfortunately, they could not test the liver due to the fluid-filled sacs. I remember getting that phone call and they said it was stage 4 because it metastasized to my liver. From what I remember, I had two large tumors on my pancreas and about 17 on my liver.
When I heard it was stage 4, it was a little more serious for me because they hadn’t given me any information while I was in the hospital. The most that I could do was cry because I was sick.
Immediately, I ran to Doctor Google. I searched “pancreatic cancer stage 4” and I read that pancreatic cancer is the deadliest and that people don’t find out about it or get symptoms from it until they’re at the end stage, so that scared me even more. Why am I on Google? Let me get off of this because it’s not doing me any good.
I cried more when I heard it was stage 4 than I did when I was in the hospital, mostly because I was by myself. I didn’t have a circle of doctors where I was trying to hold back my tears to be able to talk to them. But it was scary because it was just me and my best friend in the house, but she was sleeping because she had just gotten home from a shift, so I didn’t know what to do. I was going crazy. I needed to talk to someone about this and everyone’s at work. I ended up waiting until she woke up, walked into the room, and dropped the news on her.
At this time, I was doing my prerequisites to apply to the nursing program. I was also in the process of moving out of the Bay Area and into LA with my boyfriend. Everything had to be put on hold. Because my care team was in the Bay Area, I decided to stay at my job because I have my doctors right there and for insurance reasons. If I moved to LA, I didn’t know if I would find a good job that would provide good insurance. I had to put school on hold. I had to focus on myself.
There are a lot of things you don’t realize that people go through before they start chemotherapy. I was only 25 at the time. They told me about freezing my eggs. I was injecting myself three times a day. Sometimes I’d be too scared because I don’t like needles, so I would ask one of the nurses to inject me. I was constantly going back and forth between the Bay Area and LA until I started chemo. That’s when it got a little harder because I couldn’t travel as much. I felt like I was getting sicker.
Working in a hospital, I had direct contact with a great medical team
I was lucky enough not to run into any issues because I had resources. It all unfolded. I had a lot of people by my side helping me and making sure that I was on the right path. People around me in the hospital didn’t know that I had cancer. Everyone was in the dark but we made it work.
I had contact with my surgeon. He provided his cell phone number and told me that if I had any questions, I could text him. I had a social worker who gave me all the information, sent me everything through my health portal, and said, “If you have any questions, reach out to this person. If you want to know more information, here’s a link to information from different sites.”
My surgeon initially told me that the end goal would be to go through a Whipple procedure (pancreaticoduodenectomy), but he would like me to have chemotherapy first. He wanted to shrink the tumors as much as possible, so it’d be a lot easier to go in there.
But he did give me some treatment options. The first one was a clinical trial. I don’t remember if it was radiation, but he told me that one of the risks would be potentially having a different type of cancer, potentially a blood cancer, down the line. I said, “Why would I want to treat this cancer and then risk getting a different type of cancer in the future?” Then he gave me another option, which was oral chemotherapy, and see how that plays out. If that worked out, we would continue with that and if it didn’t, we would start IV infusions.
I never imagined I would have to worry about my fertility at 25 years old
When they told me that I should potentially freeze my eggs, I said, “Let’s do it.” I’m 25. I don’t have any kids. I would like to have the opportunity to have kids. I didn’t know what I was getting myself into. I didn’t know what the process was.
I had my first consultation and they explained it to me. They said I would be injecting myself. I would be coming in every other day to get a transvaginal ultrasound. They’re going to get bloodwork done every day to monitor, which was painful in itself. But the silver lining of that was when I would get my ultrasound done, the doctor would say I was very fertile. I always thought that I was infertile. I don’t know why that was in the back of my head, so hearing that made me feel a little better. I now know that I will be able to have kids in the future.
The treatment plan I chose
I chose to do oral chemo, which, when I researched, wasn’t as aggressive, so I thought I could manage it. I was on chemo for two weeks and then I had a break for a week before I started again.
Luckily enough, my boss worked with me so that I could do a hybrid schedule. I could work from home while I was on chemo and then when I was off, I could go to work. For the two weeks that I was on the oral chemo, I would work from home and then during the one-week break, I would go back to work. It was a constant back and forth, which I did for about three cycles.
After three cycles, we found that it wasn’t working. The tumors weren’t shrinking, so I got put on IV chemo for another four rounds. Again, that still wasn’t working, so that resulted in immediately going into the Whipple because they wanted to deal with the source before it got worse.
I was terrified. I’ve never had surgery. I’ve never broken a bone, sprained an ankle or wrist, nothing. I was never in the hospital until now. The idea of surgery terrified me because I didn’t know what to expect.
They told me that I would need an epidural and, obviously, the first thing you think of is a needle in your back. I didn’t want to do that, but I had no choice. I needed to choose life over whatever fear I had in my head.
He explained to me that with the Whipple, they would make an incision from the middle of my chest to my belly button. He said, “Essentially, it’s going to be like the size of your iPhone.” I thought it wasn’t so bad. I didn’t realize that on your abdomen, it’s pretty big.
He explained that they would take out my gallbladder completely, a portion of my stomach, my pancreas, and my small intestine, and group them together to make a new digestive system. Since I had tumors on my liver, he did a resection of the left side of my liver because that organ is able to regenerate after a good amount of time.
The procedure doesn’t sound fun. This is the worst surgery you can think of. He said, “It’s a very intense surgery that can take up to nine hours.” I’ve seen him do these surgeries so many times that I thought it should be a piece of cake for him. He cares about me. He trusts me and I trust him. I put myself a little more at ease.
I’ve had conversations with nurses who have also been in the operating room with him and they said he’s great and good at what he does. It put me more at ease knowing that I had my team of people who I knew cared about me and I trusted to take care of me.
I’m taking control of my treatment moving forward
After the surgery, they told me that they were going to monitor me every three months with a CT scan. Because the previous chemotherapy treatment didn’t work, there’s no point in putting me back on a treatment that is potentially not going to work.
They did want to put me on hormonal injections every month, but I opted out of that. I said, “Listen. I’m still healing from my surgery. I’m still going through the motions of finding my new normal. I also don’t want to be miserable and get an injection that you can’t prove will work. Why would I put myself through that? I want to heal on my own. I want to eat healthier rather than put myself through more pain and misery.”
I still have about 14 to 15 tumors in my liver, but I’ve been getting a scan every three months. Thankfully, the tumors have been shrinking on their own without any treatment. Essentially, he wanted to do another liver resection to try to do the right side of the liver. I asked if there’s a need to do surgery right now or if we can continue monitoring every three months and if they continue shrinking, if we could push the surgery as much as possible. He said it wasn’t a bad idea. I seem to be stable, so we’ll keep doing scans and blood work every three months, and go from there.
I’ve had to adjust my diet and workouts
Since my Whipple, there are a lot of things that I have to learn not to eat, like broccoli. I love broccoli, but I can’t eat it because, unfortunately, it makes me gassy and the gas hurts. I get bloated like a balloon quickly. I can’t eat a lot of dairy products. I used to drink milk, but I can’t do that anymore.
The other difficult part is when I wake up in the morning and I drink a cup of water, I have to run instantly to the bathroom. I have something called dumping syndrome, where anything I eat or drink, I go straight to the bathroom and it all comes out.
Since the surgery, I’ve lost 20 pounds and I haven’t gained it back. I haven’t lost more weight because everything I eat just comes out and it sucks. I like to go on vacations with my friends and I worry about going out to eat because I need to have a bathroom within two feet because I’m constantly going. It sucks. No one wants to live like that.
Aside from that, I haven’t had any moments in my life that changed drastically. I coped with the chemotherapy and didn’t let it take over me. I still functioned as normally as I could. I still lived my life. I still went back home to New York and saw my friends. I still went on trips. I went to Puerto Rico and Hawaii. I went swimming with the sharks. It was only the Whipple that made such a change in my life. But even then, I’m still very hard-headed and eat food that I’m not supposed to eat, then pay the price later, but only when I’m home. If I’m outside, I won’t do that. I’ve been eating a lot of fruits I stayed away from. Fast food doesn’t do any good and I feel disgusting after.
I feel like I haven’t had the normal lifestyle of a 25- to 27-year-old because people around me are getting married or having kids. Having to put my prerequisites on hold sucked because I was in the zone. I feel like I only had three prerequisites left until I could apply for the nursing program, but chemo got in the way. I could not stay awake long, so I unfortunately had to quit until my situation was resolved, especially going back and forth from the Bay Area to LA.
There are certain things that I can’t do. I see people doing Pilates. I have no core strength anymore and if I try, it’ll hurt me and I could possibly get a hernia. I can’t participate in that and it sucks. Yes, I can do a class for beginners, so it’s easier, but I would want to experience that. I have to be a lot more cautious than other people.
Where I find support
I love to go on TikTok. I love to do my own research. I found a support group on Facebook. While going through healing from the Whipple, that page helped a lot because if I had questions, I would pop it in there and a ton of people would give me their response, what they went through, and what worked for them. I was able to cope with that.
If I felt sad or in the dark, I’d pop a message on there because they can relate. Yes, I can run to my boyfriend and tell him I feel this, this, and this, but he wouldn’t understand. It felt a lot easier for me to speak to strangers, but they weren’t strangers to what I was going through, so that was very helpful.
Until this day, a lot of people, especially on TikTok, where I post about my experience, would message me and say, “Hey, I’m going to go through a Whipple. What do you suggest?” I’ll give them my suggestions. But I also refer them to the Facebook support group so that they can see what everyone’s going through and ask their questions.
What I want others to know
Be kind to your body. You have to love yourself. Understand and accept the fact that you’re sick and go from there. Everything is a mental game. If you constantly think the worst, you’re going to put yourself in that mental state and feel sicker because now you’re feeling depressed.
I forced myself to get up from bed every day. I forced myself to talk about it because it’s one thing to have those thoughts in your head and it’s another thing to talk about it out loud. It makes you feel better. When you let it out, you’re hearing what other people have to say. Positive feedback helps a lot.
I love the support group for Whipple Warriors. I gave an eighth-month post-Whipple update and people were saying, “Stories like yours inspire me. You’re doing great. I’m so happy to see that you’re doing amazing. Keep going. Keep fighting. You’re a warrior.” Those are better compliments than being told you’re pretty or you make it look so good because they’re coming from people who are also going through the same thing as you. I look up to older people. It’s like a warm hug and you get that warm feeling.
Emily Breaks Stigmas and Builds Awareness Around Stage 4 EGFR+ Lung Cancer
Emily never imagined that a lingering cough would lead to a diagnosis of stage 4 EGFR+ lung cancer in September 2024. As someone who is active and outdoorsy, she initially chalked her symptoms up to Austin’s notorious allergy season. But when she struggled to breathe during a familiar hike and noticed her voice changing, she knew something was off. Even then, cancer wasn’t on her radar until scans confirmed the diagnosis.
At first, Emily felt overwhelmed, thinking her life expectancy had suddenly been cut short. However, her oncologist reassured her that while stage 4 EGFR+ lung cancer is incurable, it’s treatable and treatments have come a long way. That perspective helped her move from despair to action. Emily chose both chemotherapy and targeted therapy, later adding radiation, and now she’s stable with minimal side effects. She enjoys being active again and even swims with her neighborhood team.
Throughout her experience, Emily has leaned heavily on her friends, family, and wider community. From organizing rides to appointments to surprising her with a fully cleaned and organized house, her circle showed up in ways she never expected. She emphasizes that asking for help is not a weakness; it’s a gift that allows others to love and support you.
Emily also became vocal about advocacy, especially within the Asian community, where awareness about stage 4 EGFR+ lung cancer is still limited. She shares her story and reminds others not to dismiss persistent coughs or shortness of breath. She hopes that by speaking up, more people will push for answers earlier and potentially catch cancer sooner.
Another pillar of her healing has been focusing on mental health. Emily admits that when treatment began, she was too overwhelmed to join support groups, but therapy later helped her process the uncertainty of living with advanced cancer. Practicing mindfulness and giving herself grace has been essential. She’s learning to appreciate everyday moments, like petting her dogs, spending time with her kids, and cherishing the present, without constantly worrying about the future.
Stage 4 EGFR+ lung cancer does not mean life is over. With evolving treatments and community support, it’s possible to live fully and meaningfully. Emily’s story reminds us that resilience often looks like honesty, vulnerability, and the courage to ask for help.
Hear directly from Emily in her video or keep scrolling to read the full interview:
How a “simple cough” turned into a diagnosis of stage 4 EGFR+ lung cancer
The powerful ways Emily’s friends and family rallied around her
Why Emily is raising awareness about lung cancer, specifically within the Asian community
How therapy, mindfulness, and giving herself grace helped Emily find peace
The hopeful perspective her oncologist shared that changed everything
Name: Emily N.
Age of Diagnosis:
46
Diagnosis:
Non-Small Cell Lung Cancer (NSCLC)
Staging:
Stage 4
Mutation:
EGFR
Symptoms:
Chronic cough
Persistent post-nasal drip
Shortness of breath while doing simple activities
Changes in voice
Rib pain
Treatments:
Chemotherapy
Targeted therapy: tyrosine kinase inhibitor (TKI)
Radiation therapy
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
I live in Austin, Texas, and I was diagnosed with stage 4 lung cancer with an EGFR mutation in September 2024.
I would say that I’m an ambivert, a little bit quirky, and pretty dorky. I love nature and animals. I try to love my plants, but they don’t always love me back. I love to read, swim, and trail run. I have a very large support network that I have been very blessed with.
When I first felt something was wrong
In the fall of 2023, I started developing a cough, which I didn’t think much of. I live in Austin. The allergies are insane. They’re tough, so I didn’t think much of it.
When the cough persisted into early 2024 again, I didn’t think much of it because now we’re into cedar season. There was always something on top of it. I’m pretty active and healthy, so I never considered that anything was wrong.
Around May 2024, I went to a doctor because I could feel that I had a persistent post-nasal drip, which he confirmed. I mentioned a cough, but he didn’t seem too concerned about it. He prescribed some nasal sprays and sent me on my way.
It was on August 31st when I realized that something was wrong. I went for a hike with my partner and it was hot. But as we were finishing the hike, which had a decent uphill grade, I couldn’t breathe. I was doubled over and couldn’t catch my breath. This is a hike I’ve done many times, so I was a little bit surprised, as was he. I chalked it up to the heat.
But by then, my voice had already started to change. I had no projection in my voice. It was scratchy. Sometimes it would get high-pitched; other times, it would get a little deeper. I didn’t think much of it because I thought it was because I was coughing a lot.
But when I realized I was having some difficulty breathing on a hike that I did all the time, it became my first red flag. Then I started noticing little things like getting winded going up stairs or doing a trail run and having trouble breathing. That’s when I freaked out and realized I needed to see a doctor about this.
The moment everything changed
When I went to a new primary care provider (PCP), I thought she was going to say I have asthma or bronchitis. Never in the realm of possibility did I think I was going to have lung cancer. But she took everything very seriously. She sent me to get a chest X-ray, referred me to an ENT, and ordered blood tests.
I got a chest X-ray that same week and then she called me on the day I was supposed to go with my best friends on a girls’ trip to celebrate a birthday. She said that there were concerns with my chest X-ray. There were nodules and she wanted me to get a CT scan when I returned. She mentioned the possibility of cancer, but she said it also could be nothing. So when my best friend walked in the door to pick me up to go to the airport, the first words out of my mouth were, “I might have cancer,” and we started freaking out. This is a great start to a girls’ trip.
When I got back, I got my CT scan done on a Friday and the physician assistant (PA) called me that Sunday, and it’s never good news when your PA calls on a weekend. I was out and almost didn’t pick up the call because I didn’t know who it was, but I’m glad I did.
She introduced herself and I asked, “Do I need to sit down?” She said yes. She explained that the nodules were cancerous. I had a bajillion questions and rightfully, she said, “I’m not an oncologist. I can’t talk about staging.” She did give me her personal cell phone number for support and then said, “I’m referring you out to Texas Oncology.”
At that time, I hadn’t told anybody other than my two best friends with whom I went on the girls’ trip. I called my sister on my way home, went straight to another best friend’s house, and banged on her door and said, “Let me in. I need you.” We held each other and sobbed. That was a rough day.
The cancer spread
That same best friend took me to my appointment and my oncologist explained that this was stage 4. It metastasized to other parts of my body. I found out later exactly where it all went. There were quite a few places.
One thing she indicated was that I had a spot on my eighth rib bone on my right side, which explained why, over the summer, I apparently had fractured it and had no idea. I thought it was an intercostal rib strain. I would have no reason to think I would have fractured a rib, but she explained why I was in so much pain there.
I went into the appointment saying, “How can I have lung cancer? I’m a nonsmoker. I’m 45 years old. I’m active. I’m healthy.” She explained that I perfectly fit the demographic of EGFR lung cancer. At that point, it was the end of September. I still hadn’t had any biopsies, so she had me admitted to the hospital. I was there for about five days for a bunch of tests. They did a lung biopsy, checked out my pancreas, and did another MRI. That week was a blur.
My oncologist is very well regarded within the community here. Every time I mention her name, other patients would say she’s the best. Other medical professionals I went to also say she’s the best. At one point, she explained that she was considering working at MD Anderson and decided not to. My other thought was to go to MD Anderson, but that would have been logistically very difficult. I completely trusted her judgment and my case seemed like an open-and-shut case.
How I educated myself about my diagnosis
I knew absolutely nothing because in my head, lung cancer was for smokers. When she mentioned that, of course, I started Googling everything I could about EGFR. It came down to the question: Why me? What could I have done differently? It just came down to bad luck. Had I known that a chronic cough was a symptom, I would have gone to the doctor immediately. That’s when I started speaking about this type of lung cancer because I got a sense that it wasn’t well-known, especially in the Asian community.
At the time, I didn’t join any support groups. I thought it would be too overwhelming because initially, it was all too much. A lot of the information, especially before my first appointment with my oncologist, was very grim. There was a two-week period when I had no idea what to do. I just knew I had stage 4 cancer.
At the time, my boys were 12 and 14. I wanted to be as open and honest with my kids as possible. I didn’t want to hide anything from them, so I was very real and honest. I said, “This is scary. I don’t know what’s going to happen. The worst thing that could happen is something bad happening to you guys. The second worst thing is me leaving you too soon.”
I was worried that I wouldn’t see my youngest son graduate from high school. They’re still babies. They’re not full-fledged adults. I wasn’t ready to leave them. I needed to process all the fears and worries by myself. I thought that if I joined a support group, I would spiral deeper.
For my kids, we had them go to Wonders & Worries in Austin. They went through a six-week program, which I think was helpful for them. Once I got through my hospital stay, process, and understood that this wasn’t necessarily a death sentence and it was treatable, my mindset changed. I didn’t need therapy at that time because I needed to survive. I needed to process everything. I’m in therapy now, but at that time, I was in my head too much to even talk about it over and over again.
It was absolutely sobering. My immediate reaction was I’m screwed. I’m dead in a few years. Of course, this was before my oncologist said anything. I thought, “This is it for me.” It’s probably the scariest news someone can get about their health, especially having no idea that you were sick to begin with.
The primary was my left lung. I had innumerable small nodules in my right lung. It had also spread to the rib, sacrum, and pancreas, and I also had a tiny spot on my brain.
I was given options for treatment
She mentioned targeted therapy and a particular drug that worked very well with this type of cancer. However, it’s a little bit slow-acting. She mentioned that if I wanted to be more aggressive, I could do chemotherapy. We discussed the pros and cons of both treatment options. I want to fight this as hard as I can, so I decided to take the aggressive approach and start chemotherapy, which was in November. She agreed with it. She let me drive that discussion and the decision. Afterward, she said, “That’s what I would have chosen for you as well.”
I started the targeted therapy drug and chemotherapy on the same day. I had four rounds of chemo between November 2024 and January 2025. After my PET scan in January, I received good news — she told me I wouldn’t need chemo anymore.
I went back to work and that same week, I received word that after discussing with a radiation oncologist, the two of them decided that it would be beneficial for me to also do a couple of rounds of radiation.
What life is like on targeted therapy
This particular drug that I’m on, I need to take at the same time every day. I take it between 10:00 and 10:30 every morning. I have been very lucky that I haven’t had a lot of side effects with the drug itself. I definitely felt them with chemo. The drug itself has been fine. I don’t feel much of a difference. I feel great right now. I wake up, hang out, take my drug, and go about my day. No major side effects.
The big side effect I had was joint pain. I felt it mostly in my fingers and knees, and occasionally on my hips. It varied from time to time, but mostly my knees and my fingers, which I also wondered about. Coupled with perimenopause, it was a double whammy. I talked to my oncologist about it and she recommended that I go on a supplement. Ever since then, I’ve felt great.
How I feel about being on treatment indefinitely
My oncologist said she would be open to clinical trials for me. It would just have to be the right one. We haven’t discussed it since then, which tells me she has not seen the right one come through. She would want something that has gone through a round or two before getting me in because she does not want me to be one of the first-round folks, which I appreciate.
Part of why I’m in therapy now is that the closer I got to feeling better, the more anxious I became. I’m stage 4 and I know that I’m on this drug until it stops working. Being stage 4, I expect it to come back. I’m in a very good place right now. I’m as healthy as I can be. But it will come back. It’s just a matter of time. Waiting for the other shoe to drop brought me so much anxiety.
I feel great right now. How long am I going to feel great before it creeps up again or before the drug stops working? Is it five years? Two years? 20 years? Having that loom over my head is what was so unnerving. I keep practicing mindfulness in that regard. I talk to my therapist about it and try to stay in the moment. I also tell myself every single day that tomorrow is not guaranteed for anybody, regardless of how healthy they are.
My life will never be the same again
My fitness level completely decreased, especially while going through chemotherapy and radiation. Fall is a great time in Austin to be outside, hiking, and enjoying the weather, and I couldn’t do any of that. I couldn’t trail run anymore. I was told not to hike. I was told to walk around my neighborhood, but walking on sidewalks is not as fun as walking on dirt for me, so that took a hit in terms of my physical and mental well-being.
Once the weather started getting warmer, I also found that I couldn’t be back in the pool immediately. Any sort of exercise was basically gone, other than a nice, leisurely walk, which, for someone who is a pseudo-athlete, is very difficult. Constantly going places, whether it’s the grocery store, felt like the COVID pandemic again, where I had to make sure that I did not get any illness whatsoever from anybody. Even my friends would say, “I’m not feeling well. I need to cancel plans with you.” It’s fine and I thank them, but not having the lung capacity to do basic happy things was tough.
I went through life imagining this beautiful future, growing old with my partner, and becoming a grandma, hopefully. I had to come to grips with the idea that I could get in a car crash the next day, but what I had planned for my future may not happen. I have come to accept that if I get to be 65 years old, I will be lucky. I will be lucky if I live long enough to become a grandmother because that’s all I want right now. I want to get promoted to grandma.
Before, it felt automatic that I’d be here until my kids grow old and then I’m going to help take care of their kids. I get to love my future grandchildren. I realize that may not happen for me, so I appreciate what I have now, as cheesy as it sounds, and enjoy the moment. I appreciate every single day for what it is.
I have been through other hardships recently, but being able to travel and see old friends is a blessing, even if the reason isn’t great. Being able to pet my dogs and waking up in bed are simple things that I’m still able to do. On the flip side, life is too short to put up with a bunch of crap. It’s also important to know when to say you’re not going to deal with certain things or not live in that space and let things go.
I was able to go back to work for a few months. I was laid off recently, so that’s one of the hardships I mentioned. But being on the drug has improved my life so much. I’m back in the pool. We even have a neighborhood swim team and that’s been fun. I look forward to our weekly swim practices and hanging out with the team.
When it’s not a thousand degrees here, I will go back to the trails and do some trail running. I have a sense of normalcy now and it feels different than taking the drug every day. My life feels like it was before I got diagnosed.
Those who were closest to me, my inner circles, were aware. After diagnosis, I told my immediate family, my best friends, and two other close friends, and that was it. Then it became a need-to-know basis. If I went to a party and someone asked why I was losing my voice, if it was someone I knew well enough, I would tell them.
My story slowly came out, but I didn’t go public with it until around March. I realized that I fit the demographic. Had I known that my cough was an indicator of cancer, I would have gone to the doctor immediately and said, “Tell me about lung cancer. I think I’m at risk of this. Please run all the tests.” I would have advocated for myself.
I figured there are plenty of other people like me, so that’s when I started talking about it at work. I posted about it to our Asian network and our women’s network. I posted about it on our neighborhood Facebook page. It was not just the Asian community specifically. My non-Asian friends might know somebody. I’m trying to get the word out there that this was a surprise.
The more I looked into it, the more I realized there are so many people like me who get diagnosed at a late stage because they had no idea. I slowly started putting myself out there. I joined that Facebook group to hopefully have that support system. Now, I feel better, but I’m also reaching out to as many places as possible. Over the course of a few months, I had 4 or 5 people say they had a cough or knew someone who had a cough, and someone else was diagnosed. If you have a cough, go and make that appointment.
I’m so grateful for my support system
If there’s one thing my friends know about me, it’s that I’m not shy about asking for help. My best friend Jenny created a Facebook group for me so we could keep friends and family updated in terms of my appointments, test results, etc. “I’ve got an appointment on this day. Who can take me?” “I’m coming back from chemo. Who wants to bring me food?” I’ve had no shortage of help in that regard. It was one of the greatest gifts I had during that time.
Before I started treatment, my sister took me on a vacation because I needed it. But while I was gone, one of my best friends got an army together to help clean my house. I had previously told her, “Oh, man. My parents are coming in with a one-way ticket. The one thing I’m not looking forward to is cleaning the guest room, organizing it, and organizing the garage.” I, like many people, use the guest room as a storage space. She jumped on it and said, “Oh, absolutely, I will do that for you.”
She did it while I was gone and not only that, she enlisted the help of so many other friends and they did the entire house. When I came back, I thought she was only doing the two spaces. A big group of friends, my partner, my ex-husband, and the kids all contributed to this huge gift, which she still claims is not that big of a deal. It’s a big deal to me.
What I want others to know
My oncologist told me at my first appointment that stage 4, especially with EGFR-positive lung cancer, is not an absolute death sentence. She told me repeatedly that it is incurable, but it is treatable. I do feel like I’m living proof of that. I did not expect to be in such a good place in such a short time. I thought I would still be struggling with this diagnosis, even with my treatments. I was diagnosed in September and here we are, less than a year later, and I’m basically in remission.
It’s a tough pill to swallow, but there’s hope. I was also told repeatedly that lung cancer research is always evolving. It’s a great time right now. We just need to make it to the next breakthrough. Even the drug that I’m on now didn’t exist years ago. Keep making it to the next one.
As cheesy as it sounds, try to stay positive because that mindset is everything. Could we lie in bed and cry, and feel sorry for ourselves? Absolutely. But that doesn’t help the body or the mind. Try to stay positive, enjoy the life we have now, and know that there’s still hope for a life post-diagnosis.
My life expectancy is much shorter. I thought I was only in my midlife at this point. I’m turning 47 soon. I envisioned life until I was 80-something. It undoubtedly will be cut short, but that’s okay because when I think about perspective, hopefully I can see my kids into adulthood, which not everybody can. I can enjoy the life that I have now as much as possible.
Asking for help is not a weakness. People want to do things on their own. They think they can manage or don’t want to bother family and friends. They don’t want to bother people by asking for help. What I’ve learned is your people, your tribe, want to help you. They want to be there for you in times of crisis. Why else would they be your friends? Don’t be afraid to ask for help and support.
How Faith and Family Keep Jackson Going Amid Stage 4 Colon Cancer
When Jackson was diagnosed with stage 4 colon cancer with BRAF mutation at 27 years old, life flipped upside down in ways he never saw coming. A former college athlete, outdoorsman, Brazilian jiu-jitsu practitioner, and self-proclaimed extrovert, Jackson was the last person anyone expected to face a stage 4 cancer diagnosis. But looking back, the signs were there. He just didn’t realize how serious they were.
Jackson had been experiencing stomach issues and hemorrhoids for years, so even when he noticed thinning stool and blood, he brushed it off. That changed quickly when severe stomach pain and projectile vomiting landed him in the emergency room. Scans revealed a tumor in his colon and more than 40 tumors in his liver. Later, genetic testing confirmed that he had a rare BRAF mutation, present in only about 8% of colorectal cancer patients.
Understandably, the news hit hard. Jackson recalls the mental toll in those first few weeks, including the panic attacks, the anxiety, and the numbness. But what changed everything was a spiritual experience after reading Matthew 6:34 with his wife during a moment of deep fear and uncertainty. He describes feeling what he could only call a divine embrace, a peace that replaced panic, and a clarity that gave him purpose.
That spiritual moment became a turning point. Jackson began embracing each day without obsessing over the future. His mental health improved, his faith deepened, and his perspective on life transformed. He’s started a weekly Bible study, watched close friends get baptized, and even launched The 3929 Foundation to raise awareness, fund research, and provide financial assistance for those impacted by cancer.
While stage 4 colon cancer with BRAF mutation is a daunting diagnosis, Jackson hasn’t let it define him. He continues to work full-time, train, fish, and golf. He’s even recovered from colostomy reversal surgery and is eyeing a return to jiu-jitsu. Although he’s undergone intensive chemotherapy and faces ongoing tumors, including recent ones found on his peritoneal wall, he remains hopeful. His oncologists are amazed at his positive response to treatment, with nearly 90% of liver tumors now undetectable.
Through it all, Jackson advocates for others to listen to their bodies, get multiple medical opinions, and not hesitate to push for testing. He credits his wife, family, and faith for keeping him grounded. He’s not just surviving. He’s living fully, with a mission to educate, uplift, and inspire.
Watch Jackson’s video or read the transcript of his interview to find out more about his story:
Why Jackson says being diagnosed with stage 4 colon cancer with BRAF mutation may have been the wake-up call he didn’t know he needed
The emotional moment at his kitchen table that reshaped his entire outlook on life
How his wife, family, and friends became his loudest advocates, and why that made all the difference
The surprising reason he’s grateful to be the one facing cancer, not someone he loves
What changed after Jackson focused on today instead of fearing tomorrow, including the Bible verse that grounded him
Name: Jackson L.
Age at Diagnosis:
27
Diagnosis:
Colon Cancer
Staging:
Stage 4
Mutation:
BRAF
Symptoms:
Severe stomach pain
Fatigue
Lack of motivation
Anemia
Blood in stool
Thinning stool
Treatments:
Surgeries: emergency bowel obstruction surgery with temporary colostomy (to discuss the possibility of HIPEC in 2026)
Chemotherapy
Immunotherapy
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
I’m from Kansas City. I got diagnosed on January 11, 2025, at the age of 27.
I’m a big outdoors person, so I do a lot of hunting, fishing, and farm work at my farm. I love spending time with my wife. I’m also a purple belt and trained in Brazilian jiu-jitsu, so that’s something that I’m very passionate about as well. I love spending time with my family and our three animals.
My friends would describe me as very outgoing, talkative, and energetic. Hopefully, they’d say I’m selfless. I like to do things for other people.
When I first knew something was wrong
I ignored a lot of them as they came through. I’ve always had stomach issues for a very long time, all the way back to high school and through college. I was always told that it was acid reflux or GERD (gastroesophageal reflux disease), or that I’ve got IBS (irritable bowel syndrome) or something like that.
Over the course of 2024, I started to see my stool thinning and had blood in it, but I didn’t realize it at the time. I’ve always dealt with hemorrhoids for a long time, so I thought it was just that.
The crazy thing is that my sister is an oncology nurse, so I would talk to her about it, ask her, and send her pictures to know if that was okay. She didn’t think anything of it either because I was healthy, a college athlete, and ate right. We thought it was something with my stomach.
Then I started feeling very fatigued and lethargic throughout the year. I didn’t feel motivated to go to the gym when I used to go every single morning and train in jiu-jitsu at night. That started fading away a little bit.
I would say that would probably be the anemia, which I didn’t realize at the time. I was very pale and even when I would go to the lake every week with my parents and out in the sun, I still was not getting a tan or any color. When I had to go to the hospital, I was starting to get tired all the time and grumpy. I was starting to notice the blood in my stool and that’s when I started freaking out a little bit.
At about that time, within a week, I was in the hospital from extreme stomach pain and I was projectile vomiting. They told me I needed to get a scan and go to the ER, and that’s when they told me they saw what they thought was a tumor. I officially got diagnosed the day after that, when I got transferred to the University of Kansas Hospital.
We thought it was appendicitis or some infection. Never in a million years would I have thought it was stage 4 colon cancer. What was wild is that he walked out and said, “There’s a big tumor in your colon, and we found spots all over your liver.” When I officially got diagnosed at KU, they told me that I had stage 4 colon cancer. I had a complete bowel blockage, so I couldn’t go to the bathroom and had to get emergency surgery. They stopped counting after finding 40 tumors on my liver.
I wanted a second opinion
In March 2025, I got a second opinion at MD Anderson. I also have a rare mutation, the BRAF mutation, which is only in about 8% of colon cancer patients. I asked my oncologist and he said, “We’ll never be able to tell you how long you’ve had this or when you got it.” The interesting thing is, when I went to MD Anderson, I asked the oncologist there, and he and his team said that they would be shocked if I had it longer than a year.
They told me that in their opinion, they thought that it turned on and spread like wildfire within a year, which honestly would make sense to me because I started getting those symptoms, the fatigue and the actual blood in stool, within that year, so it would make sense to me that I’ve maybe only had it a year. But I thought that it couldn’t be out of the realm of possibility, with all the stomach issues I’ve had, that maybe I’ve had it for five to 10 years and then it slowly grew.
Education is probably one of the most important things. I feel like it’s one of my callings and the reason I’m going through this is to help bring awareness and raise awareness about the signs and symptoms of colon cancer. One of the most rewarding things that has happened is that since I got diagnosed was I probably have had over 50 people who I either know or who I have never met in my life from across the country reach out to me and told me that because of my story and everything that I’ve shared, they’ve gotten checked out and have gotten colonoscopies or gotten them scheduled or gotten tests.
There was a kid a few years younger than me who I knew from high school, and he messaged me and said, “I know you don’t know me too well. I was younger than you on the baseball team, but because of your story, I was able to get a colonoscopy set up. I’ve had stomach issues forever. Luckily, nothing came back from it.” I’ve had dozens and dozens of people tell me that and share that with me, which is literally the most important thing to me. That’s why I started this foundation, partially to help people with financial assistance who are going through cancer and everything, but the main reason is to help raise awareness and provide resources for people to get education about it because it’s not talked about enough.
Now it’s going to be the number one cause of death and cancer in people under 50 in men and women, behind breast cancer, and it’s never talked about. You see more younger people getting diagnosed with it and at a late stage, and nobody can tell us why. That’s the biggest thing for me. Part of our mission is to help get people connected with educational resources and actual care teams willing and able to help provide that.
When I got the news “you have cancer”
It still feels like it was yesterday. I was sitting in the emergency room with a screen in front of me and it was in the middle of one of the biggest snowstorms we’ve had in Kansas. My wife was at home. My parents’ house was not too far from the hospital I was at, so they drove to meet me there. When he told me, I sat there and didn’t know what to say or how to respond, to be honest. I sat with a blank stare on my face.
Then I called my wife and she started freaking out. She drove to the hospital and stayed the night before I got transferred. I felt super sick to my stomach. I didn’t know how to process it. My mom had breast cancer when I was very young. She’s 17 years clear, so she’s been doing great, but she felt just as sick, knowing that she has to watch me go through this now after she had to.
At that time, I was numb. Then, when I got the surgery and was recovering, I was trying to be optimistic and not be mad at the world. But then I started having a lot of panic attacks and anxiety attacks. Through my faith and the people I have, I’ve been able to overcome that. I’m probably too optimistic at this point, when I was told I got two years to live. A lot of people tell me they would have never guessed, with my energy levels and how I act and respond, that I was diagnosed with stage 4 colon cancer. But that’s a compliment because that’s how I want to live. I know people who are in the situation that are mad at the world and pessimistic and whatnot, and that’s not how I want to live.
My sister was working on the oncology floor of the University of Kansas Hospital. She worked there for three years. At the time, she was working at Mass General Hospital because her boyfriend and my future brother-in-law was a resident doctor at Mass General. Now they’re in New York City and both working at Mount Sinai. She’s working as a clinical research coordinator in oncology, and he’s a cardiology fellow. At the time, she was not, but a lot of her friends and connections were still there, and I’m very lucky because of that.
Her boyfriend had a friend who was working in the emergency room that day and was able to pull some strings and usher me back pretty quickly. By the time I got back, I had two doctors waiting for me, which never happens. They did some tests and were talking about doing scans. They immediately took me up to that cancer unit, and I was treated with the best care I could have ever asked for.
I’m still close with all those nurses up there. I keep in touch with them all the time. I just had my colostomy reversal surgery two weeks ago and I was getting wheeled up there to hang out with them and talk to them because I care about them deeply and they are amazing people. They are the best nurses in the world, in my opinion. They’re incredible.
I first went to urgent care and by the time I went, I was projectile vomiting and they said, “You need to go to the hospital,” so I had to drive myself while throwing up to the closest hospital and went to the emergency room. They did some blood tests and took me back for a CT scan. A couple of hours later, they told me they found what they believed were tumors but didn’t give me an official diagnosis.
I stayed overnight at that hospital. Their oncologist came down and told me that she believed that I had stage 4 colon cancer. At that point, there’s no other hospital. There’s only one option for me and that’s going to KU. They’re the best around here for that and one of the best in the country.
I had surgery right after I was diagnosed
My sister made calls and I had to discharge myself because they wouldn’t approve a transfer. My mom had to drive me over to KU and into the emergency room. I got admitted through there. That would have been on the 10th and the very next day, on the 11th, they officially diagnosed me. On Sunday, the 12th, that’s when they did surgery to remove the tumors and put in a temporary colostomy bag.
The plan moving forward
Recovery was not fun. On top of that, learning how to deal with a colostomy bag was a big challenge. Luckily, I have a brother who lives here and another brother who lives in Scottsdale, so he flew into town. My sister at Mass General, they gave her all the time off and said, “Go be with your brother,” so she flew in. She was like my second nurse. Her boyfriend was with me too. I was recovering for about a week and they said, “We typically don’t do this, but you need to start on chemotherapy as soon as possible.”
I started chemo three weeks post-op and finished my first round on my 28th birthday. I got discharged from the hospital a week after surgery. I believe a week or two after that was when I met my original oncologist. I’ve since switched to a new oncologist. I was thinking that they’ll say, “We’ve got a great chemo regimen. We’ll be able to get you past this. You’ll be good.” My oncologist looked me in the eye and told me that he doesn’t think I’ll live past two years. He straight up said, “You’d be lucky to live past two years with your mutation and how advanced your disease is.” Nope, I’m not accepting that.
I was with that oncologist for a little bit. I got a second opinion at MD Anderson. Unfortunately, they kind of told me the same thing. The only option for me was a BRAF-specific regimen and your only hope at living past three years. That hurt a little bit, as well as all the negativity around me. Everybody was telling me that I’ll be dead in two years and if I can live past that, I’ll be lucky.
But with this chemo regimen, doing a holistic approach of changing the way I eat, what I’m putting into my body, other supplements, and different types of alternative medicine, my oncologist estimated that about 90% of the disease on my liver is gone. With having more than 40 tumors originally, he’s mind-blown that I’ve had this good of a response to all the treatments and everything I’m doing so far.
Unfortunately, after the colostomy reversal, they found more tumors in my peritoneal wall. The response that I’ve been having to treatments and everything I’m doing has been very good so far. I continue to be optimistic about what I’m doing and think that eventually, I can get to no evidence of disease, against all odds that I’ve been given.
I changed my diet
When I talk to my colorectal surgeon and my new oncologist at KU, who’s incredible, I’ve asked multiple times, “Why are we getting this? Why are so many people getting colon cancer so advanced at such a young age?” He said, “We don’t know yet, but in my opinion and through a lot of research, it has to be environmentally-related to either the stuff that’s in our food supply,” like the chemicals that are getting sprayed, microplastics, all the additives and preservatives, or at least they think they could be a big factor into why so many young people are getting colon cancer, and it makes a lot of sense.
Ever since we’ve been kids, everything we’ve been eating has been pumped full of crap. They used to, at fast food restaurants, cook everything in beef tallow and now it’s all these different oils and other crap. The amount of stuff that is in our food is killing us and is being so harmful. My wife and I, as soon as I got home from the hospital, threw everything out of our pantry. We only order from Thrive Marketplace. We go to Sprouts and Whole Foods. We try to do everything organic. We started a garden at our house. Our neighbors have chickens and they give us their eggs. We try to do our best to know where our food is coming from and not get stuff that’s overly processed or has a bunch of stuff added to it. We’ve changed the way we eat for the most part. My wife falls off a little bit sometimes as she can’t help herself, but I’m very conscious now about what I put into my body.
I try to avoid a lot of gluten to reduce inflammation to fight against cancer. I take a lot of supplements, like B vitamin complex, vitamin C, vitamin E, milk thistle, turmeric, probiotics, and others. I’m trying to help my body fight this and I think a lot of it is contributing, outside of the chemotherapy and also helping me feel better from my chemo.
I urge everybody, whether you’re going through cancer or not, to change how you eat. Get all that crap out and fix it. That’s another goal of mine, too, which is to try to help people eat a lot better as well.
Getting multiple opinions is by far the best thing you can do. We’re still looking at options. We’ve got a friend who gets treated at Duke, and they do a lot of things with a HAI (hepatic artery infusion) pump for the liver. One of the best surgeons in the country is either at Mount Sinai or MSK who does HIPEC. In City of Hope and the Williams Cancer Institute in California, there are a bunch of places we look at to get opinions from because everybody has a different approach to how they do it, whether it’s traditional chemotherapy, repurposed medicine, alternative medicine, or whatever it is.
I’m open to anything to save my life and to get this out of my body. I’m not going to settle for what one person thinks. What’s great is that my new oncologist says, “I want you to get opinions from other places. If you need help getting those set up, let me know.” He’s not the type of person who says whatever he says goes. He wants me to get as many opinions as possible. If we can do it and they want to suggest something else, he says, “I’ll communicate with them and if we can do it here, I would love to. If not, get it done there.”
I’m glad I made the switch to him. He’s incredible. A lot of people don’t want to step on their doctor’s toes when in reality, it does not matter. It’s your health and your life. Do what you need to do. Do not settle for one person’s opinion. You have to see multiple people and get opinions from as many people as possible and find out different approaches as possible to see what may work and what may not. There are so many different treatment options outside of what your local or primary oncologist has or says.
My wife is the best advocate for that because sometimes I’m too scared because I don’t want to be mean or say something that I think is rude, my wife will say, “Why are you doing that? We should go look at that.” I tell her, “Thank you. I didn’t want to say it, so thank you.” She’s incredible at it. She’s not afraid to say what’s on her mind and to make sure that I’m getting the care I need.
I completed chemotherapy before my colostomy reversal. I was supposed to have another round, but one of the side effects of the regimen for my drug is a very bad skin rash on pretty much my entire body. It looks like I have painful acne, which it is. It has gotten so bad to the point where they couldn’t give me chemo because I had to see a dermatologist. Hopefully, I’ll get back on it, which will be my 16th round of chemo. For now, we keep doing it until it stops working. It depends on how long it can be effective for and then, eventually, we’ll look at other treatments. But so far, this chemo and everything I’ve been doing have been working out pretty well, so we’re not going to change course until it’s time.
With my chemo regimen, I was on a drug, oxaliplatin, Vectibix (panitumumab), and 5-FU, and then I take oral chemotherapy, so four different chemos. I take Braftovi (encorafenib) every single day, four pills of those. I am now off of oxaliplatin because it’s so toxic and has given me almost permanent neuropathy in my hands and feet, so I had to stop that after 10 rounds because it got so bad. Now I just do oral chemo every single day. Every 14 days, I go in for my immunotherapy infusion, which I get through my port, and then I get my 5-FU pump that I’ll have for 46 hours. I’ll usually go in every other Tuesday, get chemo, and then have my pump until Thursday, and then get unhooked on Thursday.
Every day, I take four pills in the morning for my oral chemo. Every 14 days, I was getting three hours’ worth of infusions. Now it’s just one and a 46-hour pump.
I take like 25 pills a day, which is wild. It looks like I have an 80-year-old man living with me with my weekly pills on the counter.
At first, I didn’t have time to think about it because I had so much going on with recovery and trying to figure out if we could find out about this disease and how to treat it, types of treatments, where to go, what to look for, etc.
How my diagnosis has impacted me mentally
After I got diagnosed, the first month or two were very rough on me mentally. But since then, I’ve been doing well, mentally and physically.
The chemo is not as harsh on me anymore now that I don’t take oxaliplatin, which is good. I go to work in the office every single day. My company has been great about giving me time off whenever I need it, but I’ve worked full-time through everything. I’ve been blessed with the company that I work for. They give me a lot of grace and a lot of opportunity to go to my appointments and chemotherapy, and to take days off if I’m not feeling well. Most times, I’m in the chemotherapy chair working, in meetings and stuff like that. I’ve never stopped working. I’ve been working the entire time, which has helped me a lot mentally to try to stay as normal as possible.
The colostomy bag reversal has helped me a lot in terms of my quality of life moving forward, which is great. Outside of neuropathy, I work out and I’m able to still hunt and do the things that I love to do. Without the bag now, I’m optimistic that I can get back to Brazilian jiu-jitsu training, which is one of my favorite things to do in life and helps me a lot mentally. It’s a big release for me. I’ve been able to golf through all of it. It hasn’t been too much of a difficult change besides what I’m allowed to eat or not eat. I don’t drink alcohol anymore, so that’s a big change. I feel a lot better not drinking, so that’s a good change for me.
The worst is sitting at home. The last two weeks, while recovering from surgery, I would ask my wife to go drive me around the neighborhood because I needed to get out of the house. I hate sitting at home and doing nothing for all hours of the day. She, on the other hand, can do that every single day. I can’t. I have to be up and talking to people, going and doing stuff. I still have staples in me, but I’ve been going to work, seeing people, and going to meetings. I try to live as normally as I can without any change as much as possible.
I had my colostomy bag removed
The bag reversal went well. Funny story, I was without pain meds after surgery for about 18 hours because they misplaced an epidural in me, so that wasn’t fun. But other than that, the recovery has been good so far. I’m up and moving around. I’m getting the staples out and I have a three-week follow-up, so it’s been great. I’m very blessed to be in this position to at least have this surgery.
All my cancer markers are still looking good, even with a break from chemo and having the surgery. I’m in a pretty good spot right now. I’m excited to get back on chemo and keep hacking away at the tumors. But as far as the reversal and everything, it’s gone very well so far.
They weren’t able to see the tumors and the peritoneal wall is very hard to see on scans. They could see something before, but we couldn’t tell if they were tumors or if it was scar tissue from my colostomy bag and the initial surgery. Unfortunately, when my doctor opened me up, he found four tumors right there, so he ended up taking four of them out, biopsying a couple, and then sending some off. He said those were definitely cancer. There could be more or there may not be. We don’t know how many are left in there.
The goal is to see on some PET scans coming up in September what we can try to find and the plan of attack is to continue what I’ve been doing as far as chemo and then look at HIPEC surgery potentially in 2026 to try to get all those out if we possibly can and continue to target the liver. My oncologist believed that with my scans from July that about 90% of my disease on my liver is either gone or dormant right now. My latest Signatera test came back as negative, so that’s good, meaning they’re stable and not active and spreading, so I’m very lucky for that.
The hardest part of my journey
The hardest moment was definitely the tail end of my hospital stay and then the first week at home, which is when it started hitting me that my life was changed forever. I was in a bad headspace and having very bad anxiety attacks and panic attacks. I was struggling.
I had a wild faith moment that changed everything for me following that, which is when everything changed for me and I was able to get rid of all of that anxiety, panic, and worry. Ever since then, I’ve been able to lean into that, my friendships, my family, and my wife. I was able to stay optimistic and faithful and keep moving forward and continue to focus on every single day. I used to get anxious thinking about the future. What is two months going to look like from now? What is a year from now going to look like? That gave me a lot of anxiety and worry. I now focus on every single day and not try to look too far ahead. I just enjoy what I have in front of me and not worry about what tomorrow is going to look like, so that’s helped me a lot.
I grew in my faith
I had a couple of friends who are college teammates of mine who flew into town after I got diagnosed. One of my friends and his wife brought me a new Bible and a new daily devotional, which was perfect. I have been asking and trying to get myself to hop back into my faith for a very long time. I was not happy with the person I was. It’s not like anything was super bad. I was empty and unfulfilled. I wasn’t happy with who I was and what I did. I used that as a good opportunity.
One day, I had a very bad panic attack and anxiety attack. The next morning, I sat down at the kitchen table with my wife and we opened up the devotional, and one of the verses in the devotional was Matthew 6:34. It was Jesus talking about anxiety and worry. He talked about why worry about tomorrow when tomorrow’s going to have its own troubles and today’s trouble is enough for today, so focus on today
I don’t know how to describe it other than this. In that exact moment, sitting with my wife at the table, I quite literally felt like a massive hug wrapped around me. It was crazy. I’ve never experienced anything like this in my life. The best way I can describe it is like a lake being perfectly flat and like glass. In that moment, I literally felt everything, all of the anxiety and worry, get pushed out of me. I was shaking and crying. It was the most overwhelming experience of my life.
I texted my friends. I looked at my wife Hannah and I said, “This is the craziest feeling ever.” At that moment, I have never in my life been more sure that God and Jesus are real, and that I’m going through this for a reason. The more I continued to think about it, I kept praying every single night, saying, “God, please do something in my life to bring me closer to you. Change my life and change my faith,” and then all of this happened.
I’m almost grateful that I got diagnosed with this because without this, none of this would have ever happened in my life. I feel like there are two reasons I’m going through this. One is to talk about my faith and the gospel. With that, I’ve started a weekly Bible study where I have six of my friends and two of them got baptized this year. That is the greatest thing for me. I was on a radio show talking about my diagnosis and I was able to share this story. That’s the first reason why I’m going through this is to grow in faith.
How I’m supporting others with cancer
The second thing is to be able to talk about colon cancer and raise awareness about it and legitimately try to save lives. We started The 3929 Foundation. The number 39 is for a family friend of mine, his name is Matt Fitzmorris. His dad, Al Fitzmorris, played for the Kansas City Royals and passed away from cancer in December, a few weeks before I got diagnosed. The number 29 was my number growing up throughout my entire life, so we decided to start this foundation.
We filed for our nonprofit 501(c)(3), so we’re waiting for that, but our goal for the foundation is to be able to help people and their families who are going through cancer by helping them financially. I know from experience. My chemo treatments every other week are $81,000. That’s how much it costs for my chemo every 14 days. $81,000, twice a month. Luckily, I have phenomenal insurance where it’s all after my deductible was hit in January, so it’s 100% paid for, so I’m very lucky. Otherwise, I’d probably have millions of dollars of medical debt.
We know how difficult it can be to make a payment on your mortgage or buy something for the house when you’ve got medical bills to pay, so that’s our priority. People can go to our website to apply for financial assistance. We’re also working on surprise donations to people at the KU Cancer Center, where I get treatments, to help them out.
We want to provide education and resources specifically about colon cancer to raise awareness. We formed the foundation in March and in May, we had a pickleball tournament and raised $15,000, which is super cool. We’ve got another event that’s more my style, which is trapshooting, that we’re doing on October 5th to raise money. We’re trying to do multiple events throughout the year. We’re starting to sell our merchandise on our website. We’re getting that all up and running.
I feel lucky and grateful that I’m going through this and able to help people. It’s crazy to me because I get told all the time by my friends and family, “I wish you didn’t have to go through this. I wish I were the one who got this and not you.” Absolutely not. I am grateful and lucky that I’m the one going through this because I wouldn’t be able to stand watching somebody I care about go through this. Watching somebody I cared about going through that would kill me, so I’m very glad that I’m the one who has it, because I know that I can deal with it and I’m strong enough to withstand it. I tell them, “Don’t ever say that. I’m glad I’m the one going through it and nobody else I know.”
I hope that I can help as many people as possible. I don’t know how long I will be here for. Hopefully, for a very long time. I hope that, however long I am here, I can help and impact as many people as I possibly can, so that’s what I’m here to do.
I have a new outlook on life
My perspective on everything in life has changed. It’s very wild. In a weird way, I needed this. I tell people all the time. I feel the best, but not necessarily physically. Sometimes I do, but mentally and spiritually, living with all these tumors and stage 4 cancer and all this going on, this is the best I’ve ever felt in my life. I genuinely mean that. It’s crazy for me to say that, but it’s true. I am so grateful that I’ve gotten this opportunity. Yes, it absolutely sucks. There’s a lot of stuff I can’t do anymore. Some days, chemo makes me want to feel like death might not be so bad, but I wouldn’t change anything about this.
What I want others to know
I was scared to go to the doctor, not because I was actually scared, but because I hated it. I thought it was pointless. Listen to your body. If you notice anything, pay attention to your body and to anything going on. If anything is different, go get checked out and see somebody. I would always push it off, no matter what it was, thinking that I didn’t need to go to the doctor and that it’d go away.
I often think about 2024. What if in July, when I started, I paid attention and cared about the things going on? If I noticed I was starting to feel fatigued and my stool was thinning, changing, and looking different, if I got checked out and they found something, maybe I wouldn’t have had a complete blockage. Maybe I wouldn’t have had 40 tumors on my liver. Maybe it would have been two and it would have been a lot different story. Maybe I would have been stage 2 or 3 instead of stage 4.
Listen to your body. If you feel like anything is off or wrong, don’t neglect it. Get checked because I was the exact opposite. Obviously, I regret it a little bit by not having myself checked earlier. Be aware of that. Take your body and your health seriously. Change the way you eat. Be conscious of what you’re putting into your body and how you’re treating it. Exercise as much as possible. Try to make a change in your life in a good way.
Everything was Fine Until It Wasn’t: Shauna’s Story of a Cold, a Cough, an X-ray and Stage 4 ALK+ Lung Cancer
Shauna was living her healthiest, most active life at 51 when everything shifted. After what seemed like a simple cold in the fall of 2018, she noticed a cough that wouldn’t go away. A quick trip to urgent care during her lunch break led to an unexpected X-ray, and within days, she learned there was a mass in her lung. Not long after, a biopsy confirmed the diagnosis: stage 4 ALK-positive lung cancer.
Naturally, the news was shocking. Shauna had no family history, had never smoked, and had just sent her kids off to start their own lives. She and her husband were busy, working full-time, and looking forward to the next chapter. Instead, she had to face something that seemed impossible.
From the start, Shauna leaned into both her medical team and the online ALK-positive lung cancer community. She discovered support groups on Facebook, where people openly shared knowledge and resources. That encouragement helped her seek second opinions from specialists in Nashville and Boston, giving her confidence in her care. Although she stayed with her local oncologist for several years for convenience, she eventually transitioned to a larger hospital in Indianapolis to explore clinical trials and gain access to more advanced care.
Shauna’s treatment has centered on targeted therapies. Her first tyrosine kinase inhibitor (TKI) kept her stable for about five years, even though she had to adjust her dosage due to side effects like bradycardia and pneumonitis. She also underwent radiation for specific spots of growth along the way. (Editor’s Note: A tyrosine kinase inhibitor is a type of targeted therapy used to treat cancer. Tyrosine kinases are enzymes that may be too active or found at high levels in some types of cancer cells, and blocking them may help keep cancer cells from growing.)
By 2024, when new nodules appeared, she switched to a second TKI. Thankfully, her scans are stable again, and she feels better on this newer medication, with fewer side effects and more energy.
Through it all, Shauna has prioritized mindset and lifestyle. She focuses on staying as healthy as possible, embracing a mostly vegan diet, exercising, and paying attention to how her body responds. Though stage 4 ALK-positive lung cancer is treatable but not curable, she chooses not to live in fear. Instead, she invests in her relationships, grateful for every moment she’s been able to spend with them.
She’s also thinking ahead about clinical trials, recognizing how important they are for advancing treatment and offering patients more time. Her biggest challenge is knowing her time may be cut short, but she finds peace in her faith and purpose in encouraging others. As she puts it, life is short for all of us. She reminds people to live fully, not to waste days in worry, and to be kind.
Shauna’s story highlights the importance of support, second opinions, staying proactive, and holding onto hope while navigating life with stage 4 ALK-positive lung cancer.
Watch Shauna’s interview to find out more about her story:
How a lingering cough led to a life-changing diagnosis
Why she turned to online communities for knowledge and support
The role her husband and family play in her care and outlook
What clinical trials could mean for her and others with ALK-positive lung cancer
Her message about choosing hope and living fully each day
Scroll down to read the transcript of Shauna’s interview.
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
My name is Shauna. I live in Indiana. I was diagnosed with stage 4 lung cancer in 2018.
My family and friends would describe me as dependable and fun-loving.
When I first noticed something was wrong
Early in the fall of 2018, I had an illness, a normal cold, but my cough stayed after a couple of months. It didn’t go away. During lunch break at work, I went to an urgent care clinic where they did an X-ray and found a mass in my right lung. The person who did my X-ray talked to me about seeing the mass and told me I would need to see a pulmonologist and get scheduled.
As you can imagine, I was shocked. I scheduled with a pulmonologist and he scheduled a biopsy. I had a needle biopsy and all the scans that came after, and the biopsy came back positive for cancer.
The moment everything changed
I had just turned 51 that October and I was diagnosed in November. I was in the best shape of my life. My two kids had just flown the nest, and my husband and I were still working full-time. I was shocked. I had been eating well and exercising. I don’t have a family history of lung cancer. I have never smoked. It came out of nowhere. It was upsetting, for sure.
I searched for a different opinion
I live in a more rural area in Indiana, so we’re not close to any big hospitals. I started with a pulmonologist who was local and very good, and he was able to do what I needed done and diagnosed me. Then I found an oncologist who was local as well.
I came across a Facebook group for ALK-positive lung cancer, which helped a lot. It’s very educational, informative, and supportive. The people in that group have a lot of knowledge and that steered me to think of getting a second opinion, so I did. I went to a specialist in Nashville, Tennessee, and at Mass General in Boston, who is an ALK-positive lung cancer specialist.
I stayed with my general oncologist for about five years because I knew I was getting the standard of care. The treatment would be the same as I would get anywhere, and it was convenient being close to home. But since then, I have switched my care to a bigger hospital in Indianapolis because things are getting a little more complicated and I know I’ll have better access to clinical trials. It’s just a better facility.
It was pretty easy for them to tell, even with just the X-ray. They could see that it was in both lungs. I have innumerable little nodules in both lungs and one primary tumor in my right lung, so that made it stage 4.
How I learned about my biomarker
One of my second opinion doctors, who I see now at the Indianapolis hospital, is the one who submitted my sample to a company for biomarker testing. Everyone on my team knew what direction to go. I didn’t have that problem at all. Right off the bat, I’d say within a few weeks, I came back as ALK positive. I knew that there was a mutation and the thoracic oncologist told me that I likely had a mutation because of my age and some other things.
My treatment plan
Immediately, they started me on my first tyrosine kinase inhibitor (TKI) and at the full dose. I had some of the more serious side effects right away, like bradycardia and pneumonitis. My oncologist would lower the dose each time I experience an event like that.
At the time, that was the best and newest TKI available. We decided to stay the course and see because it had been proven with others that you could take half the dose and have it still be effective. In my case, that’s what we found. I was able to take half the dose and all the side effects went away. I was stable. I was never no evidence of disease. It probably shrank my original tumor about 40% and I’ve been stable since that time.
I was also able to scale my dose back up. By the last couple of years on that TKI, I was taking the full dose again with none of the same serious problems. I was on that first TKI for about five years until I started having some new spots in my left lung.
Then I had radiation. I don’t know what year that was exactly. They were about a year apart from each other. The radiation was targeting a certain spot where they thought they saw growth. Then I was stable and continued to stay on my first TKI.
In mid-2024, we started noticing some more growth in different spots. We were beginning to realize we had probably run out of time on my first TKI and that maybe it was time to switch because there was a newer drug out by that time. Research is so important because if I didn’t make that jump, that would have been it.
I started on my second TKI in August 2024 and that’s what I’m on right now. I have had some questionable scans, but my last scan in Indianapolis read stable.
What life is like on a targeted therapy
I haven’t had a lot of problems with side effects on either drug. I know I had a couple of serious ones off the bat because I was probably taking too big a dose for my body to adjust to it, but then I was able to go back to the full dose.
With the first TKI, I had a lot of bloating, awful constipation, and some sensitivity, but the side effects are nothing compared to the drug working. To me, that’s the most important thing.
When I was out in the sun, I learned to wear sunscreen, a rash guard, and a hat. I got used to how long I could stay out in the sun without burning. I found something to use for the constipation.
The second TKI causes a little neuropathy and tingling in the hands. I live with it, but that went away somewhat. I don’t even notice it now. I have so much more energy on this TKI as well and not as much weight gain. I’m very happy with this, as long as it’s working.
I thought that I would throw everything at it and make sure my body was in optimal position to fight what may come. As we know, it’s terminal, so I’m trying to live as long as I can. I’ve always been pretty healthy. I always exercised and took care of myself, but I’ve taken it to a whole new level now. I’m mostly vegan and eat anything that’s anti-cancer and strengthens my immunity.
I’m considering clinical trials
I came back from a conference in San Diego, where they talked a lot about clinical trials. The ALK+ Summit was there. They have a yearly conference that’s so informative because they have amazing doctors and patients who talk.
Clinical trials are the only way these new drugs will ever come into play. They have to go through trials to be approved so that everyone can benefit. I’ve spoken to my oncologist and though it’s not something we’re necessarily looking for yet, it’s definitely on my mind.
What my biggest challenge has been
My future as a grandma is gone. I have seven grandchildren and I was able to see a lot of them be born since my diagnosis. I feel for the younger moms with kids at home. I’m thankful that I was able to raise my kids.
Cancer is so prevalent everywhere you look now, in younger and younger people, and all kinds of cancers. I can’t say I was necessarily that surprised. I was surprised at what type of cancer I ended up with, but it happens everywhere.
I would love to be on treatment indefinitely if it would last that long and if this could be treated like a chronic illness.
My message of hope
I have my faith. My hope is in my eternity. I realize that life is short. It’s short for all of us. It’s but a vapor. My life here on earth may be cut short, but I live each day to the fullest and try to be kind to everyone. I’m enjoying my family and friends, and I try to have a balance in life with this diagnosis.
I have my main people: my two daughters, my sister, my husband, and my parents. Those are the people whom I feel like I could go to right at the beginning and anytime I’ve needed them.
What I want others to know
Life is short. Take each day as a new chance. Don’t be scared. Don’t live your life in fear. It took me about two years before I was able to not worry anymore. I’m not going to worry about this one more day. I’m going to live like I have all the time in the world.
Symptoms: Pelvic pain and discomfort, bladder issues related to pelvic tumors, incontinence, pain in the lower back and hip Treatments: Chemotherapy, immunotherapy, radiation therapy, targeted therapy (lorlatinib)
40 Years Living with an MPN: Jeremy’s PV and Myelofibrosis Story
Living with polycythemia vera (PV) has been a lifelong balancing act, and both Jeremy Smith and MPN expert, Dr. Angela Fleischman from the UC Irvine Chao Family Comprehensive Cancer Center bring wisdom, encouragement, and practical advice to the conversation.
Interviewed by: Taylor Scheib and Stephanie Chuang Edited by: Katrina Villareal and Jeff Forslund
Jeremy has been living with an MPN for nearly four decades, initially being diagnosed with polycythemia vera (PV) that progressed to myelofibrosis in 2012, and he is refreshingly honest about the emotional and physical challenges he’s faced along the way. His diagnosis started with what felt like a panic attack, leading to an emergency room (ER) visit and eventually a bone marrow biopsy. Like many people, he found the process confusing and overwhelming.
Today, Jeremy takes charge of his care. He calls his medical team his “board of advisors,” reminding other patients that they are the ones who ultimately make the decisions. He’s tried multiple treatments and is currently taking interferon alpha as part of a combination therapy, which works well for him despite not being a standard regimen. He stresses the value of second opinions, open communication with doctors, and writing down questions before appointments. Jeremy also highlights exercise as one of the most powerful tools he’s found for immune health and inflammation control. He even transitioned from mountain and road biking to riding a stationary bike in order to protect both his spleen and his ability to still ride.
Dr. Angela Fleischman, MD, PhD, a hematologist and passionate MPN researcher with the UC Irvine Chao Family Comprehensive Cancer Center, adds an equally empowering perspective. She focuses on patient-centered care, encouraging people with MPNs to understand their disease and actively participate in decisions. She believes that knowledge is a powerful tool and that patients should feel comfortable asking questions, seeking second opinions, and exploring clinical trials.
Together, Jeremy and Dr. Fleischman paint a hopeful picture. While polycythemia vera is complex and often unpredictable, staying engaged in care, building a team you trust, and prioritizing overall health can make a huge difference. Jeremy’s parting advice says it all: take notes, ask questions, connect with others, and embrace life one moment at a time.
Key Story Takeaways
Jeremy’s story: Living with polycythemia vera (PV) for nearly 40 years, Jeremy shares how his disease progressed to myelofibrosis (MF) and how he manages treatment, side effects, and mental health.
Treatment insights: He uses interferon alpha in combination with another drug (two separate medicines) while emphasizing second opinions, symptom tracking, and exercise to reduce inflammation.
Expert perspective: Dr. Angela G. Fleischman, MD, PhD of UC Irvine explains PV biology, the role of interferon alpha, and how patient-doctor partnerships and personalized care improve day-to-day living.
Empowerment message: Stay informed, build a trusted medical team, keep notes and questions ready, and live fully—sip life—despite PV or MF.
Name: Jeremy S.
Age at Diagnosis:
33
Diagnoses:
Polycythemia Vera (PV) that progressed to Myelofibrosis (MF) in 2012
Chronic Lymphocytic Leukemia (CLL)
Treatment:
Interferon alpha in combination with another therapy
Thank you to PharmaEssentia for supporting our independent patient education program. The Patient Story retains full editorial control over all content.
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
Never give up. There will be highs and lows, but you have to keep going and enjoy every moment. Sip life — embrace it and never give up.
Jeremy S. – Polycythemia Vera & Myelofibrosis Patient
Jeremy’s PV Story
Introducing Jeremy
My Polycythemia Vera and Myelofibrosis Patient Experience
Jeremy Smith: I was diagnosed with polycythemia vera in 1989, but they think I had it for five to eight years before that. September 2025 marks the beginning of my 37th year with polycythemia vera (PV). In 2012, [it progressed] to myelofibrosis (MF). I also have chronic lymphocytic leukemia (CLL).
How My Friends Would Describe Me
Jeremy: It depends on whom [you] ask. I would say determined. Crazy, maybe. Most people did not expect me to be around this long, including my doctors. [How] we see ourselves is often very different than how others see us and, of course, they bring their own baggage to their perspective. My best friend [is] my brother, who probably has the best understanding of me since we shared a room as kids. I would also say creative; I have done a lot of creative things in my life.
You have to look at the big picture… Every option should be considered.
Jeremy S. – Polycythemia Vera & Myelofibrosis Patient
First Symptoms and PV Diagnosis
Jeremy: Like most patients, I was originally seen by a local hematologist and my primary care physician. My symptoms masqueraded as anxiety because my hemoglobin was so high. I had what I thought was a panic attack while driving home, [so I] called 911 and ended up in the emergency room. Ultimately, a bone marrow biopsy confirmed polycythemia vera. The process was confusing and emotionally overwhelming.
Navigating Treatment Decisions
Jeremy: You have to look at the big picture. Combo drugs, often referred to as cocktails, can be the most effective way forward for many patients. We do not know what drug will work best for each person until [they] try it. I am currently on interferon alpha and [another treatment] together, which has been very effective for me, even though it was not previously tested. Every option should be considered.
You must be your own advocate and write down your questions before you go to the doctor so that you’re well prepared.
Jeremy S. – Polycythemia Vera & Myelofibrosis Patient
Adapting to New Specialists and Building Trust
Jeremy: Losing a trusted doctor was devastating. Dr. Schreier was very old school, but Dr. David Iberri, who took my case at Stanford, was open, younger, and more willing to embrace new treatments. Building trust takes time, especially when your numbers fluctuate. I manage my care directly, just as I would a business, and have assembled a team of doctors who consult with each other on my medical plan.
Living Well with an MPN
Dealing with a Chronic Cancer and Aging
Jeremy: It has been a long journey. The last five to six years have been the hardest, as my body [has] begun to break down. The longer you live with a myeloproliferative neoplasm (MPN), the more your body gives in structurally.
Twenty years ago, we did not know the impact of anemia on myelofibrosis patients, but now we know cardiovascular issues are a major risk — and I have cardiovascular issues now. The disease is complicated, but one thing doctors do not discuss is how grueling the mental journey is. It is taxing. I spend more time with my doctors than with anyone else.
I have established what I call my board of advisors — my doctors. I do not treat them like doctors; they are advisors. I make all the decisions.
Jeremy S. – Polycythemia Vera & Myelofibrosis Patient
Building a Medical Team: The Board of Advisors Approach
Jeremy: Because the disease is so complicated and manifests in many ways, you need to be prepared. I have established what I call my board of advisors — my doctors. I do not treat them like doctors; they are advisors. I make all the decisions.
I have four hematologists and oncologists, plus a cardiologist and other specialists. They all work together and I have learned to manage the egos involved. Getting everyone on a call can be [challenging], but it works well.
The Importance of Exercise in Managing MPN
Jeremy: Exercise is a big part of my life. Back in 2000, I was riding 30–75 miles on a bike. Now, because my spleen makes all my red blood cells and my doctors are worried about damaging it, I can only ride a stationary bike.
Exercise is truly the only proven method for improving your immune system and reducing inflammation, which is key to slowing disease progression. In the late 80s, there was no data that exercise or diet would help PV, but now we know it improves fatigue and overall health.
Exercise is truly the only proven method for improving your immune system — and reducing inflammation is key to slowing down disease progression.
Jeremy S. – Polycythemia Vera & Myelofibrosis Patient
Message of Hope
Jeremy: Never give up. There will be highs and lows, but you have to keep going and enjoy every moment. Sip life — embrace it and never give up. You’re going to die anyway, so what do you have to lose?
Seek out support groups, such as [my] Facebook group MPNLIFE, and gather multiple medical opinions. Be your own advocate. Write down your questions and, if possible, take someone to appointments to help with notes.
I value the opportunity to get to know my patients over the years or even decades… We should be partners in the patient’s health journey, and I intend to accompany them throughout it.
Dr. Angela Fleischman, MD, PhD, Hematologist and MPN Researcher UC Irvine Chao Family Comprehensive Cancer Center
Dr. Angela Fleischman
Introducing Dr. Angela Fleischman
Stephanie Chuang, The Patient Story: Would you [please] share your motivation for working with PV patients and anything in your background that helps you relate to them?
Dr. Angela Fleischman: I have been dedicated to caring for patients with myeloproliferative neoplasms (MPNs) from the very beginning of my medical career. My enthusiasm and dedication continue to grow daily, even after being in this field for quite a long time. What truly attracts me to this particular condition is multifaceted. Number one, I value the opportunity to get to know my patients over the years or even decades.
Number two, I appreciate that patients can do a lot for themselves. Self-management and self-empowerment are very attractive concepts to me as a physician. My goal is to guide a patient to maximize their health, rather than simply prescribe a medication. We should be partners in the patient’s health journey and I intend to accompany them throughout it.
Polycythemia Vera Symptoms
Common First PV Symptoms
Stephanie: What are the common profiles of patients with PV in terms of age or symptoms when they present to you?
Dr. Fleischman: Every patient is unique, but common themes do exist among PV patients. They can present at different stages in life; while PV tends to present in older adults, there are also young people diagnosed with polycythemia vera. We should not categorize patients strictly by age or type.
In retrospect, many PV patients have experienced itching for a long time without knowing its cause; they often tried different soaps or treatments without relief. If there is one distinctive symptom, it is likely chronic itching. Fatigue is common among PV patients, but it is also prevalent in the general population, making it less useful for distinguishing PV. Itching is truly the main unifying symptom.
The exact molecules driving PV-related itching are not well defined.
Dr. Angela Fleischman, MD, PhD, Hematologist and MPN Researcher UC Irvine Chao Family Comprehensive Cancer Center
Understanding PV-Related Itching
Stephanie: How is PV-related itching different from other dermatologic conditions, like eczema?
Dr. Fleischman: The feature that distinguishes PV-related itching is its aggressiveness after a hot shower. If you hear a patient describe sudden itching induced by heat or water, that is very common in PV. Patients often say, “I feel like I’m itching from inside; my whole body is itching from inside,” which sets it apart from localized itching, such as an itchy foot. That is not typical of PV.
The Science Behind PV Itching
Stephanie: Is there a simple way to explain the science behind why PV patients experience itching?
Dr. Fleischman: It most likely relates to increased red cell mass. When patients undergo phlebotomy to lower their hematocrit, the itching often resolves. It also likely involves abnormal cytokines or inflammatory proteins produced by immune cells, although the exact molecules driving PV-related itching are not well defined.
While these are characteristic abnormalities in polycythemia vera, having a high hemoglobin or hematocrit alone does not mean a person has PV.
Dr. Angela Fleischman, MD, PhD, Hematologist and MPN Researcher UC Irvine Chao Family Comprehensive Cancer Center
How PV Patients Get Diagnosed
Stephanie: How do PV patients get diagnosed? What do they notice and what leads to diagnosis?
Dr. Fleischman: Diagnosis occurs in many ways. Often, a patient visits their primary care physician for itching or another issue, or during a routine checkup. Abnormal labs — such as high hemoglobin, hematocrit, white count, and platelet count — raise suspicion. While these are characteristic abnormalities in polycythemia vera, having a high hemoglobin or hematocrit alone does not mean a person has PV. Other, more common reasons exist for high levels, such as sleep apnea, smoking, or certain medications like testosterone. It is important to emphasize that high hematocrit does not equal PV.
Initial Patient Conversations
Stephanie: How do you like to approach your first conversation with a new PV patient?
Dr. Fleischman: I want to understand the patient’s personal philosophy about their health and what they would like to achieve with their PV care moving forward. Physicians should not assume their values are the same as those of the patient. People are at different stages in their lives and may have different goals.
For example, an 18-year-old will have different health goals than an 80-year-old. I always ask, “What would you like to accomplish with your treatment?” PV can be managed in many ways. There is no absolute right or wrong approach; it should be personalized. Once I understand the patient’s goals, I provide all available information and then they select the best approach for themselves.
I always ask, ‘What would you like to accomplish with your treatment?’ PV can be managed in many ways. There is no absolute right or wrong approach; it should be personalized.
Dr. Angela Fleischman, MD, PhD, Hematologist and MPN Researcher UC Irvine Chao Family Comprehensive Cancer Center
Discussing Treatment Options and Patient Preferences
Stephanie: How do you discuss research and treatment options and listen for cues about patient priorities?
Dr. Fleischman: There are common themes among PV patients. Some, especially younger patients, are hesitant about medications and prefer a medication-free approach, often relying on phlebotomy and aspirin, if appropriate. Others want to be proactive, addressing the root cause and aiming to reduce their JAK2 percentage; interferon alpha is frequently discussed for this approach.
A third type of patient simply wants an easy regimen without concern for underlying issues; for them, hydroxyurea might be most appropriate. The treatment style should fit the patient’s preferences.
Latest Advances and Disease Modification Strategies
Stephanie: How do you introduce the latest advances to proactive patients, especially regarding disease modification?
Dr. Fleischman: In polycythemia vera, if the patient is interested in data and disease modification — changing their disease trajectory and possibly eliminating JAK2 mutant cells — the conversation centers on interferon alpha (IFNα). Many patients arrive specifically to discuss interferon alpha, having researched it themselves.
Not every symptom is caused by PV. Over-attributing symptoms risks overlooking other health issues.
Dr. Angela Fleischman, MD, PhD, Hematologist and MPN Researcher UC Irvine Chao Family Comprehensive Cancer Center
Simplifying the Biology: Why Do PV Patients Have Too Many Red Blood Cells?
Stephanie: Can you summarize why PV patients overproduce blood cells?
Dr. Fleischman: Our bodies need to maintain equilibrium in blood cell production. Hormones signal our bone marrow when to produce more red blood cells or platelets, and this signaling runs through JAK2. A JAK2 mutation, seen in almost all PV cases, causes blood stem cells to always receive the signal to produce more blood cells, leading to excess red cells, platelets, and white cells.
Tracking Symptoms Effectively in PV
Stephanie: How do you help patients track symptoms and understand their importance?
Dr. Fleischman: Symptoms are important and associated with PV, but not every symptom is caused by PV; over-attributing symptoms risks overlooking other health issues. For patients undergoing phlebotomy, it is crucial to track whether symptoms correlate with their blood counts or treatments.
For example, do symptoms worsen before phlebotomy and improve after? Did symptoms resolve when platelet counts dropped on hydroxyurea? Coupling objective data (like blood counts) with symptoms helps clarify what is truly related to PV.
Document symptoms in a journal or other format, noting onset, frequency, and patterns… Even more important is communicating the reason for sharing a symptom.
Dr. Angela Fleischman, MD, PhD, Hematologist and MPN Researcher UC Irvine Chao Family Comprehensive Cancer Center
Communicating with PV Specialists: Tips for Patients and Caregivers
Stephanie: What guidance do you have for patients and caregivers on communicating with their PV doctors?
Dr. Fleischman: It is valuable to document symptoms in a journal or other format, noting onset, frequency, and patterns, such as whether something happens every Friday or daily for a month. Even more important is communicating the reason for sharing a symptom. Are you reporting it because you want it resolved or simply to inform your doctor? This distinction helps me know how I can best support my patients.
Hopes for the Future: The PV Treatment Landscape
Stephanie: What are your hopes for PV patients in the coming years? What is changing?
Dr. Fleischman: The landscape is changing across several aspects: symptom management, blood count control, blood clotting, and tackling the underlying disease. New treatments target different areas, but for the core disease, interferon alpha remains our best option, as it can bring about molecular remission in some patients.
On the horizon, hepcidin agents (medications that increase hepcidin) will help prevent overproduction of red blood cells but may not address the disease’s root cause. It is important to clarify what “treatment” means, as it can refer to very different approaches. Ultimately, PV is a chronic condition and patients should be empowered to take the driver’s seat in managing their care.
Ultimately, PV is a chronic condition and patients should be empowered to take the driver’s seat in managing their care.
Dr. Angela Fleischman, MD, PhD, Hematologist and MPN Researcher UC Irvine Chao Family Comprehensive Cancer Center
Thank you to PharmaEssentia for supporting our independent patient education program. The Patient Story retains full editorial control over all content.
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
Ray Explores Earth’s Limits and His Own with Waldenström Macroglobulinemia
Ray describes himself as a professional explorer, but clearly, he’s much more than that. He’s a teacher, an advocate, and someone who sees life with rare clarity. In 2023, Ray was diagnosed with Waldenström macroglobulinemia, a rare form of non-Hodgkin lymphoma.
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
For someone who had crossed the Sahara Desert on foot, trekked unsupported to the South Pole, and endured countless extreme expeditions, noticing something was wrong with his body wasn’t easy. But when constant fatigue, dizziness, memory lapses, and the feeling of having “wool in his head” started affecting his daily life, he knew it wasn’t just because he was getting older.
After rounds of bloodwork and a bone marrow biopsy, doctors confirmed the diagnosis. Ray admits he first thought he had six months to live. Instead, he learned that while Waldenström macroglobulinemia isn’t curable, it’s treatable. His medical team immediately started chemotherapy, followed by monoclonal antibody therapy, though his allergic reaction to the latter made the process far from smooth. (Editor’s Note: A monoclonal antibody is a type of protein made in the laboratory that can bind to certain targets, such as antigens on the surface of cancer cells. Each monoclonal antibody is made so that it binds to only one antigen.)
Ray approached treatment like he approached his expeditions: with grit, discipline, and a refusal to let circumstances define him. Throughout treatment, he kept moving. Some days that meant training for another Arctic trek, other days it was walking down the road after days of being sick from infusions. He found comfort in normal family life, his wife’s encouragement, and the humor of friends who treated him like himself, not just “the guy with cancer.” For Ray, empowerment came from living fully, not waiting for life to “resume.”
What’s powerful about Ray’s story is how he reframes illness. He doesn’t call himself a “cancer survivor.” Instead, he insists he is a person who defined his own experience, someone who took back his life. Waldenström macroglobulinemia may have disrupted his path, but it also sharpened his perspective: savor the perfect espresso, enjoy the messiness of family life, laugh with friends, and say yes to adventures — whether that’s crossing Death Valley in record heat or showing up at his daughter’s ski race after chemo.
Ray wants others with Waldenström macroglobulinemia or any rare diagnosis to know that you can’t always control what comes your way, but you can choose how to live through it. And sometimes, that choice is the most empowering act of all.
Watch Ray’s video or read the transcript of his interview to find out more about:
How a world explorer went from the Sahara Desert to a rare lymphoma diagnosis
Why Waldenström macroglobulinemia didn’t stop Ray from chasing new adventures
The surprising lesson Ray learned from sitting in a chemo chair
How humor, family, and fitness helped Ray reclaim his life
What espresso taught Ray about appreciating the present moment
Name: Ray Z.
Diagnosis:
Waldenström Macroglobulinemia (WM)
Symptoms:
Constant fatigue
Excessive napping
Dizziness
Memory issues
Shortness of breath
Anemia
Frequent infections
Skin rashes
Digestive problems
Numb and white fingers
“Wool in head” sensation
Treatments:
Chemotherapy
Monoclonal antibody
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
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My name is Ray. I’m a professional explorer. I was diagnosed with a rare form of lymphoma [Waldenström macroglobulinemia] in 2023.
My family and friends were being kind, they’d say I’m full of energy, live for the moment, love to explore, and love to laugh. If I caught them in a bad moment, they would say I’m a little bit risky and take too many chances.
I have come from a prior life. I was nearing the age of 30 and was someone who had no passion in life or no drive. I had nothing to sink their teeth into on a day-to-day basis, which compelled me to want to get out there and do things instead of living a sedentary life, if you will. I wanted a different life and I found that life through my younger brother, who is my greatest inspiration.
He was a great outdoorsman and got me into trying out rock climbing, ice climbing, and mountain biking. I quit smoking and did a 180-degree turn and changed my life. I discovered a person who was within me who I never knew existed for 30 years, someone who could do these crazy feats of endurance, like run 4,500 miles across the Sahara desert or trek unsupported to the South Pole, dragging all of my supplies behind me in a giant sled.
Here I am, 45 expeditions later and I still love what I do. If anything, I’ve learned that we spend a lot of time talking ourselves out of trying new things and out of taking chances and then one day, time runs out and we say to ourselves, “What if I took that chance? What if I went after something in my life? Who knows what would have become?” That’s why I love adventure.
I crossed the hottest deserts on the planet on foot, typically during the hottest times of the year, and I’ve completed multiple winter Arctic expeditions at the coldest time of the year, so I’m in extremes and it requires a tremendous amount of fitness, training, and resilience to do these things. A few years before my diagnosis, I started feeling exhausted all the time. It got to a point where, for someone who’s very in tune with their body, I said to myself, “I’m not the same person. Something’s changed.”
My wife noticed, too. I was napping up to five times a day. Everybody loves a good afternoon nap, but I was napping constantly. I wake up at 9 o’clock, drink my coffee, and then I have to go back and take a nap. It was so strange.
I was trying to explain it to my doctor. I feel like I have wool in my head. Maybe it’s long COVID. I didn’t know what it was. My wife said, “You have to go back to the doctor and do a series of blood tests.”
Eventually, after finally meeting with a hematologist, they discovered that I had all this protein in my blood. My blood was like molasses, which explained all of the weird symptoms that I was experiencing. I couldn’t run to the end of my lane way without being completely winded, when I was used to running thousands of miles on expeditions in extreme conditions, so obviously there was something wrong. They did a bone marrow biopsy and then got a diagnosis.
There was never a grand plan. Quitting a pack-a-day smoking habit was one of the toughest things I have ever done. It took me three years because I was into a different lifestyle. I started racing mountain bikes and I was getting fitter. Running was becoming my greatest teacher. I was going around the world doing ultramarathons, meeting new people, and going to exotic places that I’d never been before.
Through running ultramarathons, I met two friends and we had the idea of running across the entire Sahara Desert from one end to the other. Through six degrees of separation and serendipity is what I’ve always said when I give these presentations. Matt Damon heard about it and wanted to make a movie out of it. A movie gets made out of the three of us running across the Sahara desert called “Running the Sahara,” which was directed by an Academy Award-winning director, with Pearl Jam and U2 contributing music to the film. It was crazy.
Through the expedition of running 4,400 miles, I learned a few key things. The world is an incredible place and we have a lot to learn from people who are living lives very differently from us. While on this adventure through the six countries across the Sahara desert, we met people and learned from people who are living in a global economy at a completely different end of the spectrum than where we are at and yet, there was so much to teach us.
Through adventure, I’m learning what I barely got out of high school. Now I have a voracious appetite for wanting to learn and it’s coming through an adventure. Do we finish the run across the Sahara Desert? We get to the Red Sea, 111 days, running 40 miles a day, every day. The three of us have our hands above the Red Sea and I look at my hand. I glance at our three hands and think to myself, “Wow, my hand looks the same as the other two guys. I’m the same as these two champion ultramarathon runners.”
At that moment, another important point dawned on me: all of us are capable of doing extraordinary things in our lives if we’re willing to go after them. When we put our hands in the Red Sea, I was instantly committed. This is my life now. This is what I want to do for the rest of my life. I want to see the parts of the world that are the furthest, remotest places that I can learn from, but also be in those places when they’re at their most extreme. I want to be in the Arctic in the winter and I want to be in the desert in the summer, and that’s how it all began.
I learned the power of storytelling from the film. The film was quite popular at the time. People were digging it and learning from it, so that precipitated me starting my own foundation called Impossible to Possible with my business partner Bob Cox and my wife Kathy. Since 2008, we have been taking young people on free, learning-based expeditions all over the world.
When I quit smoking, I’ll never forget being able to run up a set of stairs and not being winded. Climbing stairs used to be hard, but you forget because you’re living in the moment. You have a short-term memory when it comes to how you feel. I’m 56. I’m getting older. I had COVID a few times and I thought that’s what it was. You start to accept the situation that you’re in.
It was when other things started happening, like driving somewhere and forgetting where I was. That’s not right. I was anemic and the lack of oxygen getting to my brain was causing these weird symptoms where I knew there was something seriously wrong.
By the time I got my diagnosis, I was fully prepared. I was sure that I was going to die in six months. I’ve always been very in tune with my body. I can tell you my heart rate without looking at a heart rate monitor. It’s what I do as an endurance athlete. When I went to the doctor, the hematologist said, “Your blood protein is high. This is weird.” I thought to myself, “Oh my gosh, I have cancer.” I just knew.
When I went home, I talked to my wife and said, “They’re going to confirm what it is. They have to do a bone marrow biopsy. But, you know what, babe, I seriously think this is it. If it is, we have to tell our kids. We’ll wait until we have a final diagnosis.” But mentally, in some strange way, I was prepared.
I wasn’t excited about it, but I was prepared that if I had six months left, it was going to be an incredible six months. I was going to do so many things with my kids, whether they liked it or not. They were going all over the world with the old man and I was going to live life at 1,000%.
When I got the diagnosis, they said, “Do you want the good news or the bad news first?” I said, “Give me the good news.” They said, “Well, you’re not going to die.” I said, “That’s great. That’s a good start. That’s a good opener. What do you have next?” And they said, “The form of lymphoma you have, we’re going to treat it aggressively with chemotherapy and monoclonal therapy. It’s going to be six months of therapy, 25 days between the sessions. There’s no cure for what you got, but we think we can get you back to normal.” I thought I won the lottery.
It wasn’t until I went to the first rounds of chemotherapy that I found out that I had so many residual dead cancer cells, this protein circulating in my blood, that they couldn’t give me the monoclonal therapy right off the bat. The flood of dead cells that would enter my body could cause a catastrophic failure.
They said, “First, we’re going to start with the chemotherapy and then we’re going to the monoclonal antibody.” I had chemotherapy and thought it wasn’t so bad because I didn’t feel so much. They said, “Wait until you get the other stuff.”
On the first day of the second month, I was on the chemotherapy drip for eight hours. I came in the next day for the monoclonal antibody and my throat closed instantly. I was allergic. They worked it out and I had to have other medicines to counteract the effects. Every time I would go back in 25 days, I’d say, “Maybe you don’t need to give me the other therapy,” they’d say, “No, you’re getting every drop.”
I made a commitment when I went in and felt like s***. When I’d come home, I would lie down on the couch. I couldn’t even pee in a toilet other people use because if any random pee droplets were around, they could get sick from the drugs. I would lie down on the couch for a couple of days and my wife would say, “Okay, that’s enough. Get up.” That meant the clock was 23 days until the next round.
I made a choice. I was used to being on expeditions and choosing to do very difficult things. People ask me all the time, “What do you do when it gets tough out there?” I crossed Ellesmere Island in the Arctic with my teammate Kevin. It’s as far north on this planet as you can get. It’s an island with horribly difficult conditions. What do I think about when I’m out there? I think to myself, “I chose to be here and I chose to do this, so I’m going to give this everything I’ve got.”
I didn’t choose cancer. It chose me. But I wasn’t going to allow it to define me, nor was I going to allow it to tell me what I could and couldn’t do. My oncologist is one of the most awesome dudes on the planet. He’s a mountain biker, so he understands what I do. He said, “There’s nothing wrong with you, okay? Your immune system was collapsed, obviously. Do what you need to do.”
Every month, I would get off the couch and go for a walk. I would start with half a mile down my road and get going. Then I would train for something, whether it was an adventure in the Arctic or going off with one of my daughters into a desert. Every month, I train myself to get as fit as I possibly can, because I know how s***** I was going to feel after the monoclonal therapy. I said, “I’m going in the best fighting shape. I would go somewhere in the world, do something epic, then come back home, and go back on to the tubes.”
I would go home, lie down on the couch for two days, be sick as a dog, get up, start training, and go somewhere in the world. For six months, I chose to live and not let cancer own me. I was going to own my schedule and embrace the irony. Two days before this interview, I was up in the Arctic and now I’m sitting in a room.
When I would get chemotherapy, I would sit in a room where 65 people were sitting in the waiting room, most of whom were a lot older than me and may not be in great physical condition and not as fortunate to be on their feet. One day, a 20-something-year-old girl came in. When she walked past me, I saw that she was bald and emaciated. I thought to myself, “Dude, you have nothing to complain about. This is a cocktail party in comparison to what she’s going through
I was very aware that the difficult things we go through in life are relative to us as individuals. We can’t compare ourselves to someone else necessarily because we are living what we’re living. We’re feeling what we’re feeling. But I would not lie down on the couch feeling like s***. I thought, “It’s going to pass. It will go away. It is what it is.” That goes for all the people in the poorest countries on the planet that I’ve been in who don’t have food. There are a lot of people suffering much worse fates than what I had been given, so I’m going to live another day. A couple of days of feeling like s*** is nothing.
Sense of humor is super critical in life. We love to laugh. My best friend Bob, whom I started Impossible to Possible with, and I have this joke between us. I talk to him five times a day, so I have a room filled with gear that I use for all my expeditions. There’s a lot of cool stuff in there and tools of the trade. The day I got my cancer diagnosis, I texted Bob and said, “Hey, man, listen. Bad news. I got this crazy form of lymphoma.” He only texted back one word and said, “Dibs,” meaning he had dibs on all my stuff. It was funny.
Support comes in that way. It doesn’t necessarily have to be in the ways that one would anticipate that they would normally be. But for me, I didn’t want to be treated like someone who had something wrong with them. When my daughters had cross-country ski races, I would show up. When my daughters had paddling races, I would show up. When my wife had running races, I’d show up.
Sometimes I would show up a day after chemotherapy and feel like I was going to vomit. If I tried to pick up something, I would feel nauseous in my fingertips. I’d be standing there, thinking, “I know I’m not going to throw up, but every pore in my body feels like it.” It was the weirdest I’ve ever felt in my life. People around you who make you feel normal, even though you’re going through something crazy, are the most important to me.
In my household, life is normal. I’m lying down on the couch and my wife and the kids are screaming and fighting about something. It’s not like they have to be quiet because daddy’s passed out on the couch and I preferred that to anything else.
If you overcome it, it’s both the worst thing and the best thing that could happen in your life because right away, you start to appreciate the more subtle things in your day-to-day that before, you wouldn’t have even looked at before. I’m a big coffee person, made a great cup of coffee like an espresso, and it was perfect. It tastes so good. Pre-cancer, I would have been like, “All right, let’s go, I have to go. I’m busy.” I wouldn’t even pay attention. But now, I stop every day.
I say to my friends that I could be walking to the grocery store and get hit by a truck. You have to slow down to a point where you can be present in the moment, appreciate what you have, and be satisfied with where your life is at the moment. Find some satisfaction. Be able to appreciate where you’re at in your life in that moment. Even though you may have lofty goals, it’s not discounting those, but people have to be able to appreciate where they are in the moment because it can all be gone very quickly.
I was definitely like this before the diagnosis, but the cancer and going through chemotherapy in six months and then another year after that to get back to normal, all of that helped bring clarity. Before, it was like looking through a camera with a dirty filter and then you take the filter off and it’s completely clear. Now I completely understand and I’m very comfortable.
If they came to me and asked if they could check my blood every two months and my immune system’s not 100%, I wear a mask on a plane and use hand sanitizer all the time. I don’t care. People ask, “Isn’t that a pain in the a**?” No, are you kidding me? It’s nothing. It’s a minor inconvenience in my life that I don’t even notice.
If the doctor came back to me again today and said, “I have bad news. It’s come back again,” it would be an inconvenience, but that’s pretty much it. It’s taught me to truly appreciate where things are now. If I was to step off the planet tomorrow, would I be okay? Would I be happy with the day that I’ve just lived? You have to find that happiness in that day that you’re in.
During my third or fourth month of chemotherapy, my doctor said, “Look, dude. You can go and do these things. You’re ready to go, but here are the rules you have to follow. You know that your immune system’s collapsed, so don’t do this, don’t do that. Don’t eat raw food. Wear a mask and use hand sanitizer.”
I’m way up high in the Arctic with my buddies, the indigenous people from that region, and a couple of buddies of mine from home, and we’re weathering a snowstorm. It’s -50 degrees out. It’s in the middle of the night and we’re in this tiny little cabin on the side of a lake on Baffin Island. We heard two snow machines pull up and thought, “Who could possibly be out here?”
It was two young lads who were out hunting. They came into the cabin with a frozen caribou leg in a garbage bag. Caribou was one of my favorite things on the planet. They had a sharp knife, so they’re carving the caribou meat and it’s coming off like carpaccio. I’m looking at it and I wanted to eat it, but in my mind, I have the doctor saying, “Don’t eat anything raw, uncooked, or undercooked.” But I said, “Give me that caribou.” I didn’t even care. Sometimes, you have to let loose.
Every time I see my oncologist, I say, “You gave me my life back,” and he says, “But you weren’t going to die. I had your back. You’re not going to die. We may have to do this again in 10 years.” I said, “No, doc, you don’t understand. You gave me my life back. A life that I love. You gave me my job back. You gave me the ability to go and do the things, to run up a mountain, to do the things I do and do them well. It’s a gift to have this back.” Every time I see him, I tell him the same thing.
There’s something about the Mojave Desert in Southern California that I absolutely love. I keep going back. I’ve crossed x almost every large desert on the planet, but I love Death Valley in the Mojave Desert. So after chemotherapy, I trained. I said, “I want to go from the northernmost point in Death Valley National Park and go south about 100 miles, completely cross country to the Badwater Basin, and do it in July, the hottest time of year, and with limited resupplies.”
I did that two months after finishing chemotherapy and I wasn’t ready. They had an anomalous windstorm where the winds were hitting me head-on. It was world record heat. I had to stop. I did several trips around the world guiding and then decided to go back the following July, which was in 2024, and I was successful in going from the northernmost point to the Badwater Basin, the lowest point in North America, completely cross country, 53 hours of moving nonstop, over the gnarliest terrain on the planet, at 120°F.
It was so hot that I was seeing double, but I love the heat. Then I guided, did some trips, and did some Impossible to Possible youth expeditions in Chile and other places. The last big trip I did was this past winter. I crossed Ellesmere Island in 28 days with my teammate Kevin, dragging all of our supplies across 500 km, and living out of our tents. It was epic.
I said in the movie, “The greatest challenges that we face in our lives are 90% mental and the other 10% is all in our heads.” It’s 100% your choice how you’re going to take on that diagnosis. When you reach a crossroads, you can go right or left. It’s 100% your choice. And that is on every diagnosis. We have to choose to fight or give in.
Once you say you’re going to fight, that leads you down another road with another branch on it. Are you going to fight with passion or fight and then give in? It becomes a series of choices. You have to realize and accept that this is something. This is an adventure. This is a challenge. And I don’t say adventure in a way that’s romantic and happy.
This is going to be the most difficult challenge that someone will go through in their life. You are not choosing to do it. It’s being thrust upon you and it’s your time to rise to the occasion. You’re called to stand up and do everything you possibly can, not just for you, but for everyone around you, even for those who will come after you or people you’ve met in your life. You may need a game. It’s on you to make that decision. And when you choose to go into the affirmative, which I hope everybody does, and you’re going to go after this, fight with passion.
Every person, deep down inside them, has a capacity for a form of greatness. Maybe in their great dreams, they think they’re going to be a rock star, a great artist, or an incredible athlete. Rising to the challenge and being great means fighting this disease that you’re up against with no idea the kind of person you’re going to be when you come out the other end.
One thing about life that’s not mysterious is that we are in control of who we are. We define ourselves. We don’t allow things to define us. You survived that cancer. You’re not a cancer survivor. You are a person who defeated cancer.
If they caught it any later that it would turn into scar tissue and I would no longer be able to create healthy blood cells, they don’t know. There’s very little research on this type of lymphoma because there are so few diagnoses. Most of the time, old people get it. I think back to the years of obvious signs. My oncologist said, “You’ve had this thing for years for sure.” I thought back to three or four years before the diagnosis and now I could see it, but I didn’t see it then because you slip into a way of existing and think it’s normal. You forget what it feels like to feel good.
The biggest symptom was getting weird infections constantly because my system was so depleted. It still is. It wasn’t from the chemo necessarily. I was always getting something. If I walked into a room and even if someone who had a cold was in the other part of the room, I was getting that cold. I was getting weird skin rashes and infections. I had shortness of breath and dizziness. It felt like wool was packed in my head, which is why I thought I had long COVID. I had issues digesting certain foods. When I’d go for a run, all my fingers would be white and I wouldn’t be able to feel them, but I don’t experience it now.
Navigating Thyroid Cancer AND Chronic Myeloid Leukemia (CML): Jannette’s Story
Imagine recovering from thyroid cancer treatment and the road back to “normal,” when you get a second diagnosis, this time a rare blood cancer known as chronic myeloid leukemia, or CML. Jannette’s story is one of resilience and finding strength in the face of difficult circumstances.
She was first diagnosed with thyroid cancer in 2010 after experiencing recurring sore throat, trouble swallowing, and swelling. At first, she thought it was just strep throat, but when the symptoms persisted, she trusted her instincts and pushed for more testing. That decision led to her diagnosis and eventually two surgeries to remove her thyroid, along with chemotherapy and radiation treatment.
Just when she began to regain her strength, life shifted again. In 2014, Jannette started experiencing fatigue, nausea, vomiting, and even noticing blood during bowel movements. Because of her personal and family history of cancer, her doctor referred her to an oncologist. After a bone marrow biopsy and blood work, she received another life-altering diagnosis: chronic myeloid leukemia (CML).
Hearing the words a second time felt overwhelming, leading Jannette to break down. Still, she moved forward with treatment. She began taking chemotherapy in pill form, which was initially difficult to manage since swallowing pills was already a challenge due to her thyroid surgery. Eventually, her doctor found a medication that was easier to take, and today, her leukemia is in remission. She continues to be monitored closely and takes daily medication.
Jannette also lives with another challenge: she’s an amputee, having lost her left arm and leg as a child in a traumatic accident. That reality has shaped her strength, but it has also made managing cancer more complex. She is honest about the fear of recurrence, the difficulty of acceptance, and the exhaustion of living with a chronic condition.
What stands out most in Jannette’s story is her advocacy for others. She emphasizes the importance of listening to your body, seeking medical help when something feels off, and not staying silent when the emotional weight becomes too heavy. She encourages reaching out for support from social workers, counselors, or trusted loved ones, because isolation can make the experience much harder.
Her authenticity, vulnerability, and determination remind us that survivorship is about more than treatments and scans. It’s about permitting yourself to seek help, embracing support systems, and holding onto hope even in the most uncertain times.
Watch Jannette’s story to find out more:
How recurring sore throat led to her thyroid cancer diagnosis
What new symptoms revealed her chronic myeloid leukemia
How daily oral chemotherapy impacts her life today
Why living as an amputee shaped her resilience and perspective
The advice she gives others about seeking support and not staying silent
Scroll down to read the transcript of Jannette’s interview.
Name: Jannette J.
Age at Diagnosis:
29
Diagnoses:
Thyroid Cancer (2010)
Chronic Myeloid Leukemia (2014)
Symptoms:
Thyroid Cancer
Recurring sore throat
Worsening throat pain
Difficulty swallowing
Swelling in the neck
Chronic Myeloid Leukemia
Fatigue
Nausea
Vomiting
Blood with bowel movements
Treatments:
Surgery: thyroidectomy
Radiation therapy
Chemotherapy
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
I was diagnosed with two different types of cancer. The first cancer I was diagnosed with was thyroid cancer in 2010 and then I was diagnosed with chronic myeloid leukemia (CML) in 2014.
Never think that you can’t get cancer because you can. If you ever feel like something is wrong, please get checked out.
My symptoms got consistent over time
It usually started off with a sore throat. Then I noticed as time went on, the sore throats kept getting worse and worse. I would go to the ER each time and they would tell me I have strep throat, which I got a couple of times back to back. Then I noticed I started having an issue with swallowing and some swelling. That’s when I figured something was wrong, so I consulted my primary care doctor, who referred me to the ear, nose, and throat doctor (otolaryngologist). The doctor did some tests and we found out I had thyroid cancer.
The moment everything changed
I was shocked because I never would have thought that I would be told that I have cancer. I never thought that it could never happen to me because it can, but I was surprised because I have never had symptoms of cancer.
My thyroid cancer treatment plan
I did two rounds of chemotherapy. I had to quarantine. I couldn’t be around family and friends for a while, so that in itself was a whole new experience.
The side effects I experienced from that included feeling a little funny, like I was weak a little bit, but I don’t know if that was from the radiation. I kept feeling tired and a little bit down on energy. But after a while, I was okay. Once the radiation was done, I felt better.
I also ended up having two separate surgeries to have my thyroid removed. I’m not sure about the proper name for it, but they made an incision and started with the right side first and removed that side. They found large nodules or tumors. Then they waited a little while and did the left side. They had to put in a drain, which I had to wear. It was very painful. I couldn’t eat for a while.
I was diagnosed with a separate cancer
Fast forward to 2014, after the whole experience with thyroid cancer, I started to feel better again. I started gaining my energy back. Then seemingly out of nowhere, different symptoms started coming up. I started feeling tired all the time. Then I remember a couple of times, I started feeling nauseous and wanting to vomit. The nausea lasted for a little while. Then I started having days when I would vomit.
When I went to the bathroom to have a bowel movement, I noticed blood a couple of times when I would wipe. I told my doctor and she referred me to an oncologist. I said, “Isn’t that a cancer doctor?” She said, “Yes, based on the history of cancer in your family.” My grandma, who is my dad’s mom, and then an aunt, who is one of my dad’s sisters had breast cancer and they both passed away, sadly.
She scheduled an appointment and when I saw the oncologist, they got a sample of my bone marrow and did some blood work. We found out that I had leukemia.
That one was a little more difficult. I broke down and cried because for some reason, and I don’t know why, I felt like that one was a little more serious. I was very upset, especially since I had already gone through cancer once and now I had to go through it all over again.
I now take daily chemo
The doctor wanted to see me twice a month, so I was guessing it was pretty bad. He ordered a medicine right away for me to start. The first medication I was on was chemotherapy in the form of a pill, but I was having issues with that. Because of my thyroid, I can’t swallow pills, so I had to empty the pill into applesauce. I had to take it three times a day, so that was a lot to manage.
After a while, he switched me to a different one, which is what I’m currently on. It’s a lot easier to manage because I only take it once a day and it’s a little smaller. Sometimes I feel a little nauseated here and there, but I like it better because I don’t have to try to remember to take it up to three times a day. It’s a lot easier to manage. I’m not sure why my doctor didn’t want me to have chemo intravenously.
I’m being monitored. I still have to take the medication. He said that right now, he doesn’t feel like I should stop. I’m doing great. My cancer is in remission. I see him every six months, so I’m doing pretty good at this point.
I’ve had to face many challenges in my lifetime
Cancer in itself is a challenge, but the worst part was having it a second time because I had been through it before. I also have a disability. When I was a child, I was in a tragic, traumatic accident, so I’m also an amputee. I lost my left arm and leg. I was hit by a train and dragged 75 feet down the tracks. It happened in 1992. I lost my left arm below the elbow and my left leg below the knee. It’s hard, especially when you have a chronic or terminal illness and then you have a disability to deal with.
Accepting my new reality has been difficult
Even though I’m in remission, the doctor’s confirmed that I’m going to have to be on medication for the rest of my life. I also have the fear of what if. What if it comes back? There’s a part of me that I’ll never get back because of my childhood accident. I lost my arm and leg. I had to go through a lot with that experience. I had to go through occupational therapy to relearn how to do the simplest things, like eat with a fork, hold a spoon, and get dressed.
My advice to others
If you are ever diagnosed with cancer or any disease, whether it’s chronic or terminal, my advice is not to give up. I know it may be hard. There are days when you may get tired of going through this, but don’t give up.
If you feel it get to the point where it’s too much and it’s overwhelming, contact someone and get help. Contact your hospital social worker and tell them you need to talk to someone. They have resources. Maybe you need to talk to a counselor. Don’t sit in silence because if you do, that can most times lead you into a dark place. When I first found out, I was in a very dark place and I shut myself off from people. I didn’t want to talk or be around anybody. Please don’t let it get to that point.
How Stage 4 Hodgkin Lymphoma Changed Amina’s 20s, But Not Her Spirit
When Amina was diagnosed with stage 4 Hodgkin lymphoma (4B) in August 2021, her life as a 21-year-old dancer in New York City turned upside down. She had been training in school while navigating the pandemic when her health began to slip in confusing ways. At first, she thought it was stress, COVID, or exhaustion. But when she couldn’t climb stairs without feeling faint, woke up drenched in night sweats, and lost her appetite, she knew something was wrong.
Unfortunately, getting answers wasn’t easy. Without a primary care doctor and stuck between pediatric and adult care systems, her diagnosis was delayed for months. She had to advocate fiercely for herself, even paying out of pocket for scans when appointments kept falling through.
Eventually, an MRI and biopsy confirmed what doctors had been circling around: Hodgkin lymphoma. Hearing the official words was scary but also validating. For months, Amina had felt invisible in the healthcare system. Finally, someone acknowledged her pain and gave her a path forward. Her oncologist at Johns Hopkins immediately recognized the seriousness of her case, which gave her a sense of trust and relief.
Amina’s treatment lasted seven months and included intense chemotherapy. While she was grateful to receive care as an outpatient, the physical and emotional toll was heavy. She lost her hair, felt disconnected from her body as a dancer, and struggled with neuropathy in her feet. She also wrestled with body image challenges while trying to keep up with the demanding culture of dance. Still, she leaned into small joys, like having ice cream when nothing else tasted good, and gave herself space to rest when she could.
Being so young in a cancer ward was isolating, but Amina refused to stay silent. She began sharing her story on social media, connecting with other adolescents and young adults (AYA) navigating cancer and health inequities. Many reached out, saying they felt like they slipped through the cracks. What started as venting grew into a form of advocacy, helping others feel seen.
Amina’s family, friends, and community were her anchors. Friends showed up with flowers, trips, and support; her parents carried her through appointments and recovery. Later, when her father was diagnosed with acute myeloid leukemia, she was able to use her experience to help him access care quickly.
Now in remission, Amina embraces what she calls “thrivership” — living with intention, protecting her energy, and finding happiness wherever she can. She wants other young people with cancer to know that life doesn’t have to follow a strict timeline. Progress may look different than planned, but with patience, connection, and self-advocacy, it’s still possible to create a fulfilling and beautiful life.
Watch Amina’s video or read the interview transcript below to find out more about her story:
From dance rehearsals to chemo infusions, Amina shares the raw reality of being young with cancer
Why social media became her lifeline during treatment
The surprising way her cancer diagnosis helped her father
How survivorship reshaped her priorities and sense of joy
Name: Amina V.
Age at Diagnosis:
21
Diagnosis:
Hodgkin Lymphoma
Staging:
Stage 4B
Symptoms:
Severe fatigue
Shortness of breath
Night sweats
Bloating and stomach distension after eating
Abdominal pain
Little to no appetite
High fever
Lump in the pelvic area
Treatment:
Chemotherapy
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
I was diagnosed with stage 4 Hodgkin lymphoma (4B) in August 2021.
I’m originally from Washington, D.C., but I live in New York City now. I’ma professional dancer, so that’s my 9 to 5. When I’m not performing, I also work as an educator and rehearsal director for young artists and teaching dance. Dance is my number one love and my number one passion, and it’s also what I do for fun.
My friends would say that I’m a bubbly person. I’m definitely very friendly, and when I’m out with my friends, I’m very outgoing. I like to have a good time, try new things, and new experiences. Above all else, I always like to show up for my friends and the people I love and who love me. I believe in loyalty and having each other’s back.
There’s a special photo that stands out to me right now, which is a picture of me and my dad at Light the Night, which is an event by The Leukemia & Lymphoma Society, now called Blood Cancer United. Then Leukemia & Lymphoma Society would hold an event for cancer survivors and honorees, like advocates in the cancer community, and I was there with my dad and they were honoring me. But at that time, he was also about to find out that he had acute myeloid leukemia, so it was a moment that symbolizes me finishing my journey and him starting his. Looking back, it’s crazy and special.
When something first felt off
I first found out I was sick in my final semester of training. I went to The Ailey School for four years. It’s conservatory-style training, pretty much at the highest degree, preparing you for a professional career as a performer. It was also during the COVID-19 pandemic, in the fall of 2020, and everything was messed up. We were in masks. Everyone thinks that a cold could be COVID. I had been feeling off for a while, but I chalked it up to flu season. It’s COVID. I have to quarantine. But then when I went back to school and my regular routine of five classes a day, I found that I was super fatigued at the end of the day. It wasn’t the regular kind of tiredness. I couldn’t go up one flight of stairs. And in New York City, you’re walking everywhere all the time. I have to walk up the stairs in my apartment building and walk up the stairs to go to the subway. Tthere were some days where I felt like I was going to pass out. That was red flag number one.
The second red flag was night sweats. I would wake up in the middle of the night and my clothes would be drenched and my bedsheets were wet. I would always joke and say it was menopause, but I was 21, so this was not menopause. Why am I getting hot flashes in the middle of the night?
The third red flag was I had little to no appetite, and whenever I did eat, my stomach would swell and distend, so much. I would have cereal in the morning and you would think I went to an all-you-can-eat buffet. Then I would have to go to class and be in a leotard and tights with a bloated stomach. It felt awful.
I first noticed these symptoms in December 2020. I got it checked out in 2021, around early January and February. But they continued until my treatment started, which I didn’t start until August.
There was a big delay in my diagnosis
There was a lot of trial and error. I didn’t have a primary care physician. I was there for school, so I relied on minute clinics. But the one doctor I had a good relationship with was my OB-GYN. I felt a lump in my pelvis, which I thought might be a cyst, so I went to her. She recommended getting an ultrasound and doing bloodwork, and that’s when we found that my blood levels were off the charts. She passed me along and pretty much said, “This is out of my jurisdiction. However, I highly recommend you get an MRI and take this to a hematologist.” That then led to months and months of trying to get appointments because this was in 2021, so getting a doctor’s appointment was difficult in the city.
I learned that if you’re not 22, you’re still considered pediatric. I was making appointments at grown-up doctors’ places because I thought I was a grown up, and then they would get canceled because my insurance was saying I was still a kid, so I needed to go to the children’s hospital. I think that led to a lot of delays in diagnosis because I wasn’t officially diagnosed until July.
I ended up having to take matters into my own hands and get an MRI at an out-of-network clinic, and that’s when they found the inflamed lymph nodes. But from there, I had to wait another month or two for a biopsy appointment. In between that time, my symptoms got increasingly more aggressive. I ended up being hospitalized and that’s when they told me that I might have cancer.
My boyfriend was with me at that time. We were living together during this whole process. My parents had also been aware that I’d been sick and they’d seen the MRI results, which showed the inflamed lymph nodes. Everybody seemed to have a clue that I possibly had lymphoma, except for me, because I didn’t know what that was. Everyone was on high alert. I had a fever of 104℉ one night, so my partner took me to the emergency room.
I was stressed and afraid. However, it got to a point where it’s like, “Look. This is my last semester of school. I’m still dancing in a mask. We’re in boxes, social distancing. I either have to think about whether I want to finish strong so I could potentially get the job or take care of my health and set myself up for the long term.” That was the decision I ended up making. I would miss a lot of classes because I had to go to doctors appointments or I would try to be as transparent as possible with my teachers, sharing the information I have, and letting them know that I wasn’t at 100% and I don’t know why, but that I’m doing my best.
I’ll be honest, advocating for myself didn’t come easy to me. I was trying to do everything the right way, following the doctor’s orders, listening to my parents, and waiting. But when, time and time again, doing things by the book was not working in my best interest, that’s when I said, “I need to get this done. Where in this city can I get an appointment tomorrow? And if it costs a lot, then that’s just the price I have to pay, but I need to know something.” The waiting was driving me crazy.
I got treated in D.C. That came about because of all the hoops I had to jump through on my own in New York. I was young. My boyfriend was also young at the time, so it was a lot for us to manage on our own. My parents wanted me to move back home and get treated there so that they could help.
How I found my care team
It was a very fast-moving process because everything took so long that we tapped into our family and friends resources. I was very fortunate that my mom had a cousin who worked at Johns Hopkins and she helped with speeding along the process of getting an appointment and getting all of my pathology from New York passed along to the hospital in D.C. so that I can be seen and treated quicker.
When I met my oncologist, he was the first doctor who validated how I felt. They kept saying I might have lymphoma and the whole hesitancy to be transparent with me was that I was young, so they didn’t want to be negative or dampen the mood too soon without having all of the answers. I understand that perspective, but I felt like I was dying. For them to say that it might not be anything that serious sucked because what, was I going crazy? I knew I wasn’t. But he was the first one to look at me and say, “Yes, you are very sick. Yes, this is 100% lymphoma. We’re getting your pathology. However, you’re checking all the boxes and we need to get you started next week.”
I ended up trusting him 100% because he looked at me, did the exam, looked at my reports, and shared in my frustration. Even without the pathology to 100% confirm it, everything else lined up with a patient who has Hodgkin lymphoma. The outlier was how young, active, and healthy I was. Besides that, everything else made sense.
The fact that he shared that frustration and validated how I was feeling made me feel close to him and made me pretty much trust him with my life because that’s what you’re doing when you’re choosing an oncologist.
When I heard the words “you have cancer”
I was very emotional. It was a relief to have an answer. I remember having a little bit of jitters or goosebumps because it’s a tough reality to face. However, on the flip side, it was nice to have an answer to all the questions that I had swirling around in my head for months. I’m not immunocompromised. It isn’t COVID or the flu. This is exactly what it is and here’s how we’re going to treat it. Having that clarity helped me find peace, oddly enough. I know I was going into the hardest thing I was ever going to have to do in my life and that some people don’t even have to face thankfully, yet I felt calmer having that clarity.
What my treatment plan looked like
I had to do seven months of chemo. It was rough. Chemo sucks. It literally zaps you of any energy. However, in the beginning, I think after my third cycle, I was tired, but feeling better. It was the necessary evil that I had to go through in order to get cured. It’s just hard. Especially since the treatment plan that I had included a specific drug that causes bone pain and another drug that makes you lose all your hair, so it’s tough. I felt like I was losing parts of myself in a sense. I didn’t have any energy. I didn’t want to socialize with people. I wanted to be alone after my infusion days. I would get treatment once a week and then I would have a week to recover. On my off weeks, I felt a little better every time. Every off week, I was getting stronger and stronger and stronger. At the moment, it’s not fun at all, but then the results are worth it.
I was fortunate enough to be an outpatient. I would be in the hospital for a full workday, around 6 to 8 hours a day, and then my dad or my mom or whoever was there with me would take me home.
They gave me this body patch and it would administer medication at home as well.
Managing the side effects of chemotherapy
I developed neuropathy in my feet, which was a tough part of recovery, especially since I need them for my profession. After a few months, I was able to start dancing again. I was even ambitious enough to try and take classes every now and then while I was still getting treatment. It wasn’t at the level I was before I got sick — that took a lot of time — but I was fortunate enough to have a mentor who gave me a space to quite literally fumble around and reconfigure myself. I appreciate her for that because I think that allowed me to get to where I am today.
I didn’t like the way food tasted, which was a big one. I didn’t want to eat anything except Ben and Jerry’s ice cream. My parents would be so concerned, saying I couldn’t eat ice cream because it’s sugar. I said, “Mommy, I have blood cancer. It’s different. And the doctor says I need to put weight back on, so I should eat lots of ice cream.” That was the only thing that I could taste, something sweet
With the chemo, they gave antiviral medication and that made me very agitated. I appreciate my family for being patient with me during that time because I’m sure I was being a diva. Being on different medications puts you in a loopy state. There were a lot of people who visited and were with us in the house, and though I wanted to be social, at a certain point, I would get drained and shut off. Even after I finished, for a few months, I would find that still happening. It’s like this fog went over my brain. My eyes were glazed over and I completely checked out.
It was hard, honestly, because I felt like I had to fake it and make it seem like everything was okay. I didn’t have an explanation at that time as to why I felt awful or uncomfortable. As a young dancer, I was struggling with body dysmorphia. I had to stand for an hour and a half in front of the mirror and even though all I had was cereal for breakfast, I’m bloated and my clothes don’t fit right. I feel uncomfortable, but I still have to go through my day pretending like everything is okay. I have to show up and give the teacher energy.
There was even one moment when I did this photo shoot and the photographer was frustrated with me because I was very quiet and timid, and it was coming through in the photos; in reality, I was just exhausted. I felt tired and everything about being in that space was draining in the moment. It was tough because my job and what I was doing in school was so physical, so there’s no way to dial it back. I either have to push through and push myself to the limit, which often happens. That’s how I got hospitalized. Or I give up and I’m not good at giving up.
How I navigated having cancer so young
I was the only young person in the infusion ward. Whenever I would go, people always thought my dad was the patient, but he was bald by choice and I wasn’t, so that felt isolating
Beyond that, I had just finished school in New York and was building my own life. I just got my own apartment and then I had to leave it all behind and go back home. In a lot of ways, it felt like I was going back in time, like going back to square one. For a little bit, it did break my spirit. I felt defeated. I relied a lot on finding ways to entertain myself and fill my time. Being Gen Z and in my 20s, TikTok and Instagram were my coping mechanisms.
What I think was unique about me being a young person with cancer is I made the choice not to suffer in silence, so I told my friends about it and posted on social media about it. Through that, I was able to find a community of people going through similar experiences at my age. Even though they weren’t physically there with me, I found them online.
When I was in treatment, I was connecting with a lot of people who were asking about my experience and asking for advice for themselves or for loved ones. Even if they didn’t have cancer and were dealing with other health issues, they would ask, “How did you push through? The doctors keep telling you no or to come back when it was worse than it is now, instead of treating you.” By sharing my experience, it opened a can of worms on the fact that a lot of young people, regardless of a cancer diagnosis or not, have this issue where we slip through the cracks of the healthcare system, whether we’re still on our parents insurance or not, and we’re still treated as kids even though we handle all of our own finances and do things on our own. Or we just got booted off our parents’ insurance, so now what do we do?
Through that, I connected with a young woman who was in India getting treated for breast cancer. She was thanking me for sharing my story because she was 30 and she thought that she was the only person dealing with this. I also found a lot of other nonprofits for women like me or young people like me who feel isolated and connect them to each other. What I thought was just me venting turned into a form of advocacy, so when I saw that there was this interest and need for connection, I stuck with it and have met so many beautiful people because of it.
It’s important to have these conversations so that other young people can learn from my “mistakes.” I don’t want to say mistakes because I didn’t know, so by sharing, it hopefully gives others information so that they are more informed and knowledgeable, and feel empowered to speak up for themselves and not take things in blindly.
The hardest thing was accepting that everything was going to change. Not just biologically, but even around me, things were going to change, and a lot of those things would be permanent. My relationships with people, with friends whom I had in New York, and with my community would shift — some for the better, some not so much. I also felt like the world was moving on without me, which was a scary feeling. I needed to focus on getting better, but also, what does life look like outside of this? In that moment, the most frightening thing was the unknown and the change.
I was a little lucky to have had family members who had battled cancer in the past, even though it was in a different form. I have a cousin who is a breast cancer survivor and took her experience of being diagnosed in her 30s and turned it into advocacy, so I had her as a role model. This is hard. Everything is going to change. However, you will come through fortified and stronger. In the moment, it’s hard to believe when people tell you good things and they give you advice. You want to take it all in, but there’s a little voice in your head that says, “I don’t know.” Having her guidance definitely helped a lot.
I had to have trust because in that instance, there’s nothing I could control. My body literally woke up one day and said, “We’re going to shake things up,” and there was nothing I could do about it. Once that switch is flipped, I have to take the necessary steps to fight. I know sometimes that can be tough for people, but I’m comfortable with the fact that I had to battle cancer because it’s literally a war inside my body. I either make the choice to take steps against it or not. I feel like you have to fight against it, not just with how you treat it, but also with your mindset and your mentality. Hope and positivity and a little bit of delulu were all I had.
The sky isn’t even the limit anymore because I’ve been faced with my own mortality. I thought that my life was going to be cut short at 20-something. I’m 26 now and have a whole lifetime ahead of me, so I’m going to do everything I possibly can.
My support system helped get me through the hard days
I have an amazing family that came together to support me during this time, even our community in DC showed up, like my parents’ friends who supported them. I think it’s important for caregivers to also receive support. When I don’t have the energy to greet people, they were still there for my mom and my dad, which made me happy because they’re struggling with this, too. Even though I’m the one who’s actually receiving the medication, they are invested emotionally and financially, and sacrificing their time to be there for me, so I’m glad that they also received support.
Most importantly, I saw who my friends were. Being in New York, there are millions and millions of people here. I like to talk to people, make friends, and hang out. I have friends who took me to a resort while waiting for my pathology report. We had a vacation planned and I said I couldn’t go because I had cancer. She asked, “What are you doing during the week while we’re gone?” I told her I was going to cry in bed at home. She said, “No, we’re going to go,” and she took me to the Dominican Republic. The week after, I had to go to D.C. I had two other friends who would send flowers to my parents’ house and who drove from New York to visit me. It showed me, even when I can’t be there for them the way I want to, that they’re still there for me and it was so beautiful.
What survivorship means to me
Survivorship, or thrivership as I like to say, honestly looks like finding my happy. I try to find happiness and joy in any scenario, living and loving life to the fullest, not putting any limitations on myself, taking care of my health physically, mentally, and emotionally, and protecting my energy.
I found that I don’t need to please people. I don’t need to overextend myself. I don’t need to do things that I don’t want to do or that don’t serve me. Surviving cancer taught me that. A lot of people say, “Wow. I feel like you’ve grown so much.” I just got a reality check. I got a true sense of what matters and how I want to spend my time on this earth.
What I want others to know
Even when it’s hard, it does get better. You don’t necessarily have to rely on things outside of yourself to make it better. Finding what brings you joy and calm is what’s most important, even when you’re going through the hardest or scariest time of your life.
Specifically for AYA cancer patients or young people in general, setting this deadline or checklist for yourself of when and how things need to be accomplished is hindering you from going for it. I had a set plan. I was going to go to this school, graduate, get into this company, and complete these things by this time. When it doesn’t happen, you feel defeated. You feel like you’ve lost, when in reality, it could just be a few more steps away and you just have to keep going. In the arts industry, but also in life in general, I feel like we’re all in a queue. You either decide to stay in the line and see it through, or you get out right before the thing you’ve been dreaming of is about to happen. Youth is a blessing, but we also don’t need to accomplish everything right away. If we stick to it, find our happiness, and keep fighting, then you will achieve everything you put your energy into.
How often I’m monitored
I was being monitored every other month and then every three months. Now it’s every six months. Everything’s been good so far. My doctor has been conservative with the checkups because I’m not doing it with a PET scan, which I think is the traditional way. Because of how advanced my cancer was, I didn’t have the luxury of time to do any fertility preservation, so he wants to limit my exposure to radiation as much as possible.
My dad was diagnosed with cancer after me
It was shortly after I had finished chemo. He started experiencing symptoms and then he was diagnosed almost exactly a year after I finished.
He chalked it up to him getting older. I went through all the hardship I had to go through to help him. AML in your 60s could be a death sentence. Thankfully, there has been a lot of development and research into it, so that it’s treatable now. I can’t imagine what it would have been like if he had to jump through six months of hoops like I did.
In our case, he called me and told me what was going on, asking my thoughts on it, and sharing his experience. I texted my doctor and asked, “Can I send you my dad’s charts? Because it looks scarily similar to what I had. Can he come and see you?” He was able to go the following week.
Some people say, “I would be so upset. How can you stay so positive when all this is happening back to back to back?” I took it as what I went through was not in vain because it’s literally helping my father right now get the treatment he needs and what he deserves. Now he’s still here and in remission. Being in remission and being a survivor doesn’t mean everything’s all rainbows and sunshine, but we both made it through, so for that, I’m grateful.
Symptoms: Intense itching (no rash), bruising from scratching, fever, swollen lymph node near the hip, severe fatigue, back pain, pallor Treatments: Chemotherapy (A+AVD), Neulasta
Symptoms: Severe fatigue, shortness of breath, night sweats, bloating and stomach distension after eating, abdominal pain, little to no appetite, high fever, lump in the pelvic area Treatment: Chemotherapy
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Cheyenne’s Stage 3B Melanoma Taught Her the Power of Self-Advocacy
When Cheyenne was diagnosed with stage 3B melanoma in December 2024, everything in her life shifted. At first, doctors thought it was stage 2, but after surgery in January, the diagnosis became clearer. As a photographer and storyteller, she’s spent decades documenting the world around her, but suddenly she had to turn that lens inward and focus on her own health.
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
Her first warning sign was a mole on her back that itched. Even though her gut told her something was wrong, the first doctor told her it was cosmetic. Thankfully, a physician assistant took her concerns seriously and ordered a biopsy. That persistence saved her life. From that moment on, Cheyenne learned the importance of advocating for oneself and trusting one’s intuition. She emphasizes that when something doesn’t feel right, asking questions is essential.
After surgery revealed cancer in her lymph nodes, she was officially diagnosed with stage 3B melanoma. She describes the wide local excision as far more invasive than she expected. Recovery was rough, but she leaned on her husband, friends, and a strong medical team. Even though she feared asking for a second opinion, she eventually welcomed it and found reassurance knowing she had access to comprehensive care.
Immunotherapy became her next step, but it hasn’t been easy. Side effects like colitis, thyroid problems, and adrenal issues forced her to pause treatment. Despite setbacks, she has shifted her focus toward what she can control, by supporting her body with meditation, yoga, organic foods, and daily juicing. Instead of filling every day with endless work and projects, she’s learning how to slow down, listen to her body, and celebrate small victories.
Cheyenne also reflects on the emotional side of stage 3B melanoma. Losing her beloved dog BamBam, who went through treatment at the same time as her, deepened her understanding of presence and grief. She’s found comfort in rituals, from nightly tea to morning breath work, and discovered the power of community, whether through friends dropping off books or her husband sitting by her side at tough appointments.
Above all, Cheyenne stresses the importance of education. She believes that knowledge is power, and being informed about treatment options, staging, and side effects helps patients make decisions with confidence. Sharing her story makes her feel seen, and she hopes it encourages others to speak up, ask for help, and feel safe in their vulnerability.
Watch Cheyenne’s video or read her interview transcript to find out more about her story:
She learned the hard way why trusting your gut is non-negotiable
What her dog’s cancer taught her about slowing down and living fully
The unexpected ways diet and meditation became her lifeline
How she found her voice and learned to ask for a second opinion
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
I got diagnosed with stage 3B melanoma in December 2024. I was first diagnosed with stage 2 and then post-op in January, we discovered I was stage 3. I’m from Malibu, California, but currently reside in Santa Cruz.
I’m a photographer, traveler, and a lover of dogs, kids, and all things. I work in the commercial advertising space. I photograph a lot of women’s health, women’s fashion, kids, sports, recreation, and travel. I’ve been doing that for about 25 years.
I’m married to a very handsome man who is an avid surfer and a geologist. We love living in Northern California. We’re very outdoorsy people. We live in a little town just above the ocean. It’s super beautiful, and it’s been a great place for me to work on this healing journey, for sure. I left LA about five years ago. I was there my whole life. I got my diagnosis when the fires were happening.
I’m not working at the moment. I’m taking a little break to focus on treatment and doctor’s appointments, but I still go outside for little walks, hikes, and days at the beach.
My parents grew up in the film industry. They were both stunt people. I grew up in a family of stunt people, including my mom, dad, aunts, uncles, cousins, and my sister’s husband. I grew up in that industry and loved image-making. I got into stunts as well in my 20s. I did that for a while and then realized the longevity was not there for your body, so I turned to the other side of the camera.
I picked up a camera and fell in love with it. I could tell stories, travel, and make a job out of it. I studied under a photographer in New York and then started my career. I feel lucky that I had creative parents who encouraged that process and it took flight. I signed with my first agent at 28 and went down the path of shooting lifestyle. I never got heavy into fashion. That parlayed into doing a lot of campaigns with kids and athletes. It’s been an incredible career and I plan to keep going for a while.
I talk to my best friend every day, so I hope I do her justice. She would describe me as a planner, a very hard worker, sensitive, and a good friend. I work hard. I probably work too hard sometimes, but I love my job, so it’s a combination of always having creative ideas that I want to get out of my head and loving to be busy. I’m learning to slow down, so not filling every moment with something to do is my true challenge right now. I definitely get described by most people as a very hard worker, very sensitive, and someone who loves to organize and plan things.
I realize it’s become a coping mechanism for me. I’ve had a lot of loss in my life. I’ve lost my parents at a young age, a couple of friends, and a couple of ex-boyfriends. We lost our dog to cancer last month, which was the hardest thing in the world. Learning to slow down has been a gift. He got diagnosed two to three months after me. We went through treatment together for months. I would go to his and then go to mine.
I don’t often have pictures of myself. It took me a while to dig deep and find some. I have a million pictures of everybody in my life and all the things I do, just not of me. There’s a photo of my dog and my arms after treatment one day, and there’s a tattoo on my arm that says, “Love you, Daddy-O.” It was the last note my dad left me before he passed away, and I got it tattooed on my arm.
I ended up naming my dog BamBam, which was my dad’s nickname. There was a day when I was lying on the ground with BamBam, my arm was wrapped from an infusion and his arm was wrapped from an infusion, and my tattoo was in the picture.
The first red flag – my initial melanoma symptom: an itchy mole
I noticed a mole on my back, which had been there for some time. I’ve learned now that moles on the back are very hard to watch because you can’t see them, but it was something that I was concerned about. I asked my general practitioner about it, not long before we ended up getting it biopsied. Unfortunately, the first doctor I shared it with told me that she thought it was cosmetic. I pushed and said, “Are you sure?” I let her know that it itched and found out later on that it was a telltale sign. I’ve learned that when in doubt, biopsy. I didn’t know enough at the time.
About two months later, I came down with pneumonia in December 2024, so I went in for a chest X-ray. The physician’s assistant asked me about the mole and he said, “Have you had this checked out?” I said I did a couple of months ago. He asked if we had biopsied it and I said no. He said, “I can’t do it right now, but can you come back tomorrow? I’d love to shave this off.” I said absolutely because my prior doctor made me feel like it was cosmetic and it wouldn’t be covered by insurance, so thank God for him. We shaved it off.
I got a call from him two days after Christmas and he let me know the news. I truly feel that man saved my life. I ended up finding out how aggressive it was and how a few months later would have made a big difference. Everything changed on December 27th and within three days, I had a surgeon, a plastic surgeon, and dermatology. I had four or five appointments and was scheduled for wide excision surgery in two weeks. Everything got put on hold. He told me that this needed to be the most important thing to focus on and I took him very seriously. Recently, my husband also got his skin checked by him, so I got to shake his hand and thank him.
The first doctor I saw spent five minutes with me. The second physician assistant that I saw spends 20 to 30 minutes with me. He even said to me, “You can’t give good care in seven minutes,” which apparently is the average they spend with you in the room. It was a doctor I had seen for the first time, so I hoped for a bit of a longer of a visit. I was pretty upset.
I feel very in tune with my body. I trust my intuition a lot. I had a mom who erred on the side of hypochondria, so I have always erred on the opposite side and never worried about little things in medical stuff, but I truly feel when I know something’s wrong, something’s wrong. I trust my gut wholeheartedly now.
I was upset and it took me a few months, but I eventually wrote that doctor a letter and let her know my case. She wrote back a very kind letter, apologizing and thanking me for letting her know, and let me know that she would pay more attention and be more careful in the future. It felt good to get that off my chest. It felt nice and her response was nice. There were no excuses. She just apologized and I appreciate an apology that is heartfelt, so it was nice.
The moment everything changed
I will never forget it. It was a Friday and I was trying to watch a movie with my family. The phone rang and I remember thinking to myself, “Stay present. Don’t answer the phone.” Then it rang again. It was a number I didn’t know. I have a little trigger response from the losses I’ve experienced when the phone rings repeatedly. I talked myself out of answering. Then I noticed the time and day. It was a Friday at 5 o’clock, which is when doctors tend to call.
I didn’t remember the biopsy, but when it rang a third time, I decided to check the message. I paused the movie and told my husband I needed to make a phone call. Sure enough, it was the doctor. He was incredibly kind and sweet. I put him on speakerphone, so he delivered the news to my husband and me. We didn’t know any staging, but we knew that it was serious.
My brain fast-forwarded to all the things I had coming up and all the things I needed to do. “I’m leaving in 10 days for a job in Mexico. Can I go?” He said, “I don’t think so.” His exact words were, “This needs to be the most important thing for you right now.” Of course, I somehow figured out how to still do my job in Mexico, but it went from a calm two days after Christmas to we need to go home and go to the doctor every day this week. Everything changed.
I had had a basal cell carcinoma removed from my face about 10 years prior, which was treated with a little bit of chemo cream. I had learned a little bit. I knew that melanoma was the scary one, but I didn’t know how scary and serious it could be and how much it could spread.
I started a deep dive. My sister-in-law sent me a book that I immediately read. My favorite book is called Radical Remission and it was an inspiring book to read. There are a lot of scary books out there. In this book, there were a lot of positive stories and different stories, so it was a good introduction to cancer. I went down the Google rabbit hole. I wanted to educate myself, so I started listening to audiobooks and podcasts, trying to learn as much as I could.
How I found my care team
I was given a team. Friends immediately said I needed a second opinion. I felt comfortable with my team. I didn’t know any different. I’m a part of an organization in Santa Cruz that I’m happy with. It felt comprehensive and personal. It felt good, so at that time, I didn’t feel any need for a second opinion.
We’re also very close to Stanford. I felt like I was in a good teaching hospital. If and when I need to go there, I will. I have established care over there since then. I feel like I have a very good team.
How surgery went
At the time, I was T2. They explained that it was hard to tell for certain because my biopsy was done by a shave, so they didn’t know the true depth until they went in. They explained to me how the surgery would go, that they were going to do a sentinel lymph node biopsy, and remove some of my sentinel lymph nodes in my right arm. My mole was right behind my right arm.
They explained it pretty well to me and then I followed up with some research. I would say I didn’t grasp how big the excision and how intense the surgery were going to be. The year prior, I had a hysterectomy and it felt invasive. The recovery is as bad as removing an organ and I didn’t expect that. In my mind, I thought they were going to cut and dig it out. It was a good chunk. I had armpit numbness and inability to use that arm.
They ended up finding cancer in one of my lymph nodes, which they removed, and there were still some things lighting up in that area, but it was more invasive than I realized. My husband saw me post-surgery and got very lightheaded. It was more than I expected, for sure.
I heard wide excision and I knew I had a plastic surgeon and a surgeon on the case, but I didn’t realize how big a surgery it was going to be. I saw him yesterday. They had to go all the way down to my muscle and underneath my breastbone. For the lymph nodes, they were in there more so than they had hoped, so he didn’t realize that either.
The cancer spread
January 15th was a bummer. They called us to talk about it in person. We didn’t even know that the staging could go up from there at that time. They explained the depth of mine. On a scale of 1 to 4, it was a 3.5. It was about as deep as it could go. It wasn’t ulcerated, but it was the nodular type, which was the most aggressive.
Later on, when I went to Stanford, I learned of the mitotic rate. The rate at which it multiplied was 10, so I was very high risk and very advanced. They explained my treatment plan. I would start immunotherapy in March. I would do 13 rounds spaced out by about three weeks, so it was supposed to take me a year. It’s going to take me a lot longer than we had planned.
I started in March. I did about four rounds and I’ve been on pause for the last nine weeks because of side effects.
What the mole looked like
It wasn’t that big. It was dark and raised, which you would notice for sure. I have freckles everywhere and covered moles. I’m a tough case. I wasn’t staring at it because it was on my back, so it’s not like I was watching it. I have others I look at and ask about, and they are wildly different from everything else on my body for sure.
At Stanford, they have a mole mapping program. They do full-body photography at some of these hospitals. For people who have a lot of moles, they scan your entire body and simulate it next time you come in, so they can see the growth in size and keep track. How can you keep an eye on several moles? I’m grateful for that technology, for sure.
My reason behind getting a second opinion
When you first get diagnosed, everyone has a lot of ideas, opinions, and suggestions. Everybody wants you to get the best possible care. I’m in a smaller town and I wasn’t sure how great the care was here. I thought that as soon as I had a bad feeling or if I had questions or doubts, I’ll go for a second opinion.
In the beginning, I felt on track, and then my dermatologist in Santa Cruz suggested it. She said, “Your skin is hard to keep track of. You’ll be in here every three months, but it might not hurt for you to go to Stanford.” As soon as she said the words, I said, “I would love that. I’d love to go over there.”
I feared asking for a second opinion, even though I know it’s very normal. Your doctors aren’t supposed to take it offensively, but I didn’t ask outright. She referred me to their melanoma center and got me established. I’m going every six months. I’m in there so that if I need further care, I can get it from them. It feels safe. I appreciate it.
I have a dear friend who has stage 4 cancer who’s also established over there. He has been my cancer guru. He’s communicated with his doctors about my doctors. He said, “It sounds like you’re in great hands.” He’s helped me navigate some of the systems as well.
I’m still going every day. I’m not doing treatment, but that doesn’t mean I’m not doing anything. I’m currently getting steroid infusions and IV hydration for all my side effects. I feel like I go to the doctor every day, so I’m very grateful that they’re close to home. It’s only a 20-minute drive for me. Stanford’s about an hour and a half, so it’s not too bad, but I’m grateful that I’m not there as often as the cancer center in Santa Cruz.
Treatment side effects forced a break
I developed colitis from the immunotherapy right away, as well as a full-body rash, extreme fatigue, thyroid issues, adrenal issues, and pre-diabetes. I learned that I had autoimmune issues coming into this. I’ve had Hashimoto’s and thyroiditis that were underactive my whole life, so I’ve been on synthetic medication. I’ve been told that there’s a tendency for people who have autoimmune disease to develop it that once you start immunotherapy, you have a higher chance of getting other autoimmune diseases. Apparently, about 25% of people get one of these side effects from my treatment and 4% get all five. I’m in that four percent.
They all came crashing down pretty fast. It was tolerable for a moment, but the colitis got so bad that I lost a lot of weight and wasn’t able to eat or do anything. I was going to the bathroom so many times a day. We did two rounds of steroids orally, but that didn’t work. I was doing daily infusions of steroids and I was very dehydrated from that. The IV hydration has been helpful.
We’re in a holding pattern of trying to get me down to a dosage where I can resume treatment. We got a second opinion and the conversation has been about whether we can stop treatment if we need to. The general consensus is no. We’re going to try and push through, but we have to get my body to a place where I can tolerate it.
How my life has shifted
I have a great support system. I have incredible friends who have shown up and sent me messages, photos, books, and things. I have started meditating in the mornings, which has been a game-changer for me as it allows me to focus on breath-work and calming my nervous system. My nervous system is so wound up from this year and the loss of my dog, so I’m trying to be calmer so that every experience is not as jarring to my body as it has been.
My days are pretty slow. I try to do yoga every day. What I used to do before 8 a.m. is about all I can do for the entire day. Now it’s like going to yoga, the grocery store, and getting my infusion, and then going home, which is a very successful day and is hilarious. I used to do that, go to work, and do other social things. If I have an infusion and go to yoga, there’s nothing I can do after 5 p.m.
It’s been a gift. It’s been a huge learning lesson. I won’t lie, the first six months of this year, I kept working. I didn’t stop. I figured out how to work in between treatments and pretended like everything was fine. I kept operating at my highly efficient level. When they told me that I had adrenal insufficiency and borderline adrenal crisis, I finally started listening. My body’s not handling this well and is mad at me, so I need to stop.
I was proud of how much I could do. If I wore it like a badge, I was like, “Oh, I can do 100 things in a day and then come home and still do all these things.” Now I’m just like, “Why did I feel like I had to do that all the time?” So I’m slowing down, which I have truly only done in the last two months and even more so in the last couple of weeks.
It took my dog getting sick for me to realize, when they told me he had about 2 to 4 months to live, that I don’t want to miss any of those moments and that made me start turning down work and staying home. I know that was his gift to me, getting me to a place where, once he was gone, I have to do this myself and focus on this.
Navigating my diagnosis with my partner
It’s changed us a lot. He’s been incredible. I feel like he’s been there with open arms. Fortunately, he works from home, so when there are appointments that I need him to go to with me, he will take the time and come with me. He has been supportive financially. He was working part-time very comfortably and took a full-time position as soon as I decided to go on disability. He stepped up and offered to take the brunt of all the things, so I didn’t have to worry financially.
He always checks in with me after appointments and asks how they went. When it comes to going to appointments with me, I battle with that because when in the beginning, I thought I could do it by myself. Then I started to realize that some of them were hard. You don’t always know when they’re going to be hard, so I had to share that with him. He was like, “Tell me when you want me to come.” I would go to these appointments and come out of them sobbing, and he would be like, “Why didn’t you ask me to come?” I’m like, “I had no idea that was going to go that way.” That has been a lesson for us both where I pick and choose.
If I have a funny feeling, then I ask him. I felt bad about it in the beginning because he was missing a lot of work, but now I say, “This one’s important,” and that’s it. He shows up. Sometimes we get him on video if we need to or something. He’ll be there at the drop of a dime for me.
Our whole life has obviously changed in terms of travel and commitments. We had to have some big talks about what our expectations were. We try to look at some of it as short-term and some of it as long-term, like not going anywhere for the next month. For us, it was the whole year. This is the year where we stay at home and focus on this. We can do weekend getaways. We love to travel. We’re both little adrenaline junkies with sports and things, so not skiing, surfing, or doing all those things is hard for us.
But we live in a beautiful place and we’re getting to spend more time at home and with friends. The quality of our time and where we spend it are very different. We have a wedding coming up in October and almost everybody is very understanding. We say we will be there, but my schedule could change. I want to make it to my nephew’s wedding more than anything in the world and I’m sure I will, but I’m nervous because I don’t have my treatment schedule and I don’t know what’s going to happen. We have that flexibility between the two of us and allows him to do things on his own. I have a lot of girlfriends who will show up and spend time with me. If a girlfriend comes to town, I tell him to go do something.
I love to have something to look forward to. Fortunately, my husband is not a planner. He’s very go with the flow and a last-minute Larry. I joke that he’s the Zen master Buddha because he’ll just do whatever. It’s been a huge lesson for me because I don’t operate that way. Meeting somewhere in the middle is probably the healthy approach.
But the way I’ve been looking at the future has been in shorter chunks. With work, I used to look one year ahead, five years ahead, and have all these big goals and plans that I’m not doing at the moment. Now, I’m staring at my feet, trying to get one foot in front of the other. I’m readjusting my brain and learning how to take one day at a time, but still allowing myself to have little things.
We went to Tahoe this past weekend. We saw some friends and having that on the calendar for two months, I thought, “If we make it, we make it.” The day before, we almost didn’t make it because I had infusions that day and didn’t get scheduled until the day before. I thought I might feel horrible. Friends who understand have been wonderful, but we made it and I had a great time.
Now we have nothing on the calendar until the wedding in October. I still allow myself little things to look forward to, but the month of September is for me to focus. I’m probably getting a port in the next couple of weeks, so I know I have that surgery coming up. I take it day by day. I wake up and try to get to yoga.
I didn’t know how difficult I would be. They did a vein check on me, looked at me, and said, “You’re great,” even though the phlebotomist hates me. I average 3 to 5 sticks every single time. I’m covered in bruises, with the hydration and the steroids. The nurses have been telling me for months to do it and I kept thinking, “I don’t want to do another surgery.” But now that my treatments are pushed until February, I’m nowhere near done, so I might as well. I’ve asked a lot of people and they have said they were grateful. I haven’t heard anything negative about it, so I can still have my life and do all the things.
What I want people to know
What has stuck out for me is to trust your gut and your intuition. Our intuition is so spot on when you’re in tune with your body, whether you’re not feeling well or something doesn’t feel right. I’ve gotten a lot better at advocating for myself.
Knowledge is power. I know I’m not a doctor and I don’t know the specifics, but understanding your type of cancer, type of treatment, and your options is huge. We go into these appointments and get fed so much information so fast that we take it as the Holy Grail. We don’t always know what our options are. Always go in with a list of questions and write down answers to questions. Try to have a very comprehensive understanding of what’s going on.
I was told to tell my story to the doctors at Stanford, so I reiterated my case and they were like, “Wow.” Even my husband was like, “Wow, that was impressive.” They said, “You’ve done your homework.” It feels good because then I can understand when they send numbers, names, and details. Fighting for myself is something I’ve learned a lot.
How I’ve supported my body
I have radically changed my diet and focused on things at home that can help heal myself. I’m dealing with cancer, but at the same time, I feel like I’m healing my body in a way that it’s always wanted, even outside of cancer. I was trying to reduce the inflammation in my body already and this was a catalyst. Weirdly, I feel like the things I’ve been doing have been so supportive and integrative that my body’s oddly happy. I can tell my body is like, “Oh, thank you. This is the care and concern that I’ve always wanted.”
There were things I always wanted to do, but it felt so hard to make big changes in my diet. Do simple things, like getting rid of processed foods. None of us should be eating crap, but it’s so easy and accessible. I’m feeding and nourishing my body well. It has been something that has felt so good and something that I felt so proud of, that I wish we all did, regardless of cancer. Getting slapped with the C-word is a bigger incentive, but I am proud of the healthy changes I’ve made in my life, which has been the silver lining in all of this for me.
I’ve taken certain foods out of my diet. I have stopped drinking and stopped eating all processed foods. I’ve stopped eating red meat. I don’t do any cow products. I’ll do some goat and sheep, some game occasionally, because I’m pretty deficient in iron. I’ve switched to completely organic. I juice every day.
I take a lot of supplements that I’m deficient in. I’m bad at taking vitamins, so my supplements are little droppers of vitamin D, B12, iron, folate, and all those kinds of things. I put them straight in my green juice in the morning and I drink that. I’ve enjoyed juicing, as nerdy as it sounds, but it’s become meditative. It’s my thing. Every Sunday, I get all my veggies ready.
I have a garden. I don’t grow all of it, but we get vegetables from a local community supported agriculture (CSA) box and that feels great, that all my veggies are coming from close by. I try to get my food as close to home as possible. The meat and vegetables all come from local regenerative farms. I’ve decided that the money I’m saving on alcohol and all the other crap gets to go into good food, fruits, vegetables, and meat, and keeping that close to home.
I’m off sugar. I’m doing honey and maple syrup, and that was the hardest for me. Alcohol was no problem. Processed meat was hard because I loved sausages, but when I took out sugar, I felt like a crazy person. It took me months, but now I’m here. Once a month, if I go out to dinner and someone gets dessert, I’ll have a bite or two. It tastes delicious and wonderful, but it tastes too sweet.
I freeze bananas and cover them in a sugar-free non-dairy chocolate. My sweet tooth is completely gone, which is amazing. Now I have a bite of a real dessert and I’m like, “Whoa!”
Getting rid of all the artificial sweeteners and caffeine is a new one. I was doing caffeine for the first six months and when my adrenals got shot and I stopped working, I was like, “Why do I even need caffeine?” It’s a habit that I had to break. Occasionally, I’ll have a chai tea, but for the most part, I’m off caffeine.
Drinking tea every night has become an awesome ritual that I love. I was never a big tea drinker, but the practice of making it, drinking it, and going to sleep after has been nice. All those things have felt supportive. I feel like I’m helping my body through this process. It’s hard on my body and if there was anything else inflammatory going on in my body, if I was trying to fight it with all that crap, you’re adding insult to injury and making it harder on yourself.
I feel like I have this very clean vessel to soak in the medicine and help myself heal, which has been my favorite part. I got a lot of cancer-fighting and anti-inflammatory cookbooks and found new ways to make dinner for my husband and myself. I’m sure there are things he misses that I’m not making. But fortunately, we were both already gluten-free and have gone dairy-free as well. He’s been on board with that, but I still make a steak every now and then.
