Author: Chris Sanchez

Directing My Life with Polycythemia Vera: A Filmmaker’s Story

Post author By Chris Sanchez
Post date June 30, 2025
No Comments on Directing My Life with Polycythemia Vera: A Filmmaker’s Story

June 30, 2025

Directing My Life with Polycythemia Vera: Filmmaker Todd Strauss-Schulson’s 17-Year Story

Polycythemia vera (PV) changed everything for film director Todd Strauss-Schulson when he received his diagnosis at just 28 years old. This rare blood cancer, affecting fewer than 200,000 Americans, didn’t stop Todd from building a successful directing career or living life to the fullest. His 17 years of experience with polycythemia vera offers hope, practical insights, and inspiration for anyone navigating life with this myeloproliferative neoplasm. Todd’s experience is an example of how managing symptoms with regular phlebotomies and building a strong relationship with your care team means a PV diagnosis doesn’t have to define your future.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Todd’s health awareness started early, shaped by witnessing his father’s health challenges. A routine physical in L.A. flagged abnormally high blood counts, setting Todd on a path filled with uncertainty. A bone marrow biopsy confirmed PV and the presence of a JAK2 mutation or Janus kinase 2 mutation (a gene mutation found in about 95% of PV patients that provides instructions for creating a protein that promotes the growth and division of cells). These terms were initially foreign, but soon became part of his reality.

Navigating polycythemia vera wasn’t easy. Todd faced anxiety, fear, and countless questions. But a pivotal encounter with his doctor, Dr. John Mascarenhas at The Tisch Cancer Center at Mount Sinai in New York, transformed his outlook. Dr. Mascarenhas didn’t just provide medical care; he offered reassurance: “I got you.” This phrase became a comforting anchor and set the scene for the establishment of a strong doctor-patient relationship.

Living with PV for 17 years, Todd manages his condition with regular phlebotomies or blood extractions, aspirin, a health-conscious lifestyle, and working closely with his care team to track his symptoms. Yet, it’s not just about treatments. Todd openly discusses the invisible anxiety that lingers, how something as simple as a bruise can trigger worry, and how humor-filled texts with his doctor ease his mind.

What stands out is Todd’s proactive approach. He doesn’t let PV define him. He embraces life passionately, advocates for himself, and shares his story to inspire others.

Read the story and watch Todd’s video to uncover more about his experience, including:

His unexpected diagnosis at 28 that changed everything. Find out how he copes.
What living with polycythemia vera really looks like — Todd shares it all.
From anxiety to advocacy: his emotional PV transformation.
How Todd leverages his creativity and experience to manage his rare blood condition.
How he transforms life’s challenges with PV into empowering lessons.

Name:
- Todd S.
Age at Diagnosis:
- 28
Diagnosis:
- Polycythemia Vera
Symptoms:
- None: discovered during a routine physical that uncovered extremely high blood counts
Treatments:
- Phlebotomy
- Aspirin

Thank you to Incyte for supporting our 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 for treatment decisions.

Table of Contents

About Me
How I Found Out I Had Polycythemia Vera (PV)
Putting My PV Diagnosis in Perspective
Managing My Disease — and Anxiety — for 17 Years
My Father’s Diagnosis Helped Me Navigate My Own
Tracking My Symptoms and Integrating PV Into My Life
Building a Relationship With My Care Team
I’m Living My Life
Why I Share My Story
My Advice for Those with PV or Another MPN

I am not PV. I have it.
It’s part of me. It’s not the whole me.

About Me

Hi, I’m Todd. I’m a film director and writer, and I live between New York and Los Angeles. I was diagnosed with a rare blood cancer, polycythemia vera (PV), in 2008, when I was 28 years old.

The specter of health, doctors, and medicine hung over my life in invisible ways. My father was sick when I was growing up. He had hepatitis C, and he had had two liver transplants, one when I was 13 and one when I was in my late 20s.

I probably didn’t realize it back then, but I was always very concerned about my health. I believed in hospitals and doctors because I saw them save my dad’s life when I was young. I would get physicals, and I liked going to the doctor.

How I Found Out I Had Polycythemia Vera (PV)

I got myself a routine physical in L.A. when I was 26 or 27. My blood counts came back insanely high. I didn’t know what that meant.

I was alone here in L.A. My family was back east. They told me to see a specialist.

I went to a hematologist. She performed a bone marrow biopsy. She tapped into the base of my spine, into my hip.

I gritted my teeth while they went in there and sucked the marrow out of the bone. It hurt so bad, and it felt like they sucked the soul out of my body. The whole thing was just chaotic and scary, and I didn’t know what to make of it.

The diagnosis came back. I had PV and a JAK2 mutation, too. I didn’t know what any of that meant, but I knew who to consult.

I had this relationship with the hospital that saved my dad’s life. As a matter of fact, my whole family had a relationship with this angel of a coordinator in the transplant department.

Her name was Claudette. I emailed her and said, “This weird thing is happening to me. Which doctor can I trust in your hospital?” She said, “We have the best,” and introduced me to Dr. John Mascarenhas.

The diagnosis came back. I had PV and a JAK2 mutation, too. I didn’t know what any of that meant, but I knew who to consult.

Putting My PV Diagnosis in Perspective

My diagnosis made me anxious and nervous. But Dr. Mascarenhas made me feel confident and contained. He made me feel like there was a team behind me. He literally said, “I got you, I got you.” That made me feel cared for.

I think the idea of having a slow-moving blood disease that may or may not progress is more about living with uncertainty and the anxiety it produces. My diagnosis was like a bomb that goes off under the ocean and touches off all of these ripples.

Throughout the 17 years of my life after my PV diagnosis, I felt anxiety and uncertainty and experienced highs and lows that were mostly beneath the surface. But for the first few years, I was almost able to pretend I didn’t have PV. I just had to do my treatments: phlebotomies or blood draws, and aspirin.

Later on, more significant things took place that revealed themselves slowly, as opposed to an acute, huge reaction. But Dr. Mascarenhas saying those things really helped me at the outset.

He said, “PV is a blood cancer, but don’t freak out about that word. It’s a myeloproliferative [neoplasm] — it’s characterized by excess production of blood cells.”

“PV is something you die with, not from. You’re young, and most people get PV when they’re older. So, you’re talking about 20 years of quality of life, but you’re 27 years old, so you’ve got a lot of life to live.”

“We’ll manage this and stay on top of this together. You’re going to get phlebotomies every six weeks, and you’re going to take baby aspirin.”

Managing My Disease — and Anxiety — for 17 Years

I’ve gotten used to those treatments for polycythemia vera. I do phlebotomies every few weeks and continue to take aspirin.

That being said, I carry around an invisible anxiety. Whenever I feel uncomfortable or fatigued, or if I get, say, a bad bruise on my leg, my anxiety spikes. I’d think, “Oh my God, is it progressing?”

But Dr. Mascarenhas helps me deal with that anxiety, too. I would text him, “Something’s happening!” and he would reply funnily, “Shut up. You’re fine, you know.” Something that would immediately diffuse the panic, anxiety, or fear.

I’d say, “Hey, John, I have a big bruise on my leg.” He’d reply, “Yeah, it’s because you’re taking baby aspirin and it’s no big deal.”

If I say, “Hey, John, I’m pretty tired,” he’d go, “Describe your life to me,” and I’d do so. He’d respond with, “Yeah, that would make anyone tired.” And I go, “Could it be the PV?” He’d go, “Yeah, could be.”

So, there’s nothing acute. I think you just learn to live with it.

I certainly do try to take care of myself. I don’t smoke, I go to the gym, and I try to eat decently. I try not to get overweight. I try to drink enough water. My health is at the forefront of my mind.

I’ve basically been stable these 17 years. The numbers may be elevated, but they’ve stayed exactly the same all this time. There’s wear and tear as this disease goes on unmitigated, but at least it’s not getting worse. So thank God for that. I’ve basically been doing what I’ve always done.

Dr. Mascarenhas is the tip of the spear with research and stuff. Every so often, we’ll try a new intervention to see if it’s useful.

I’ve basically been stable these 17 years. The numbers may be elevated, but they’ve stayed exactly the same all this time.

My Father’s Diagnosis Helped Me Navigate My Own

Aside from my polycythemia vera treatments, I’ve also been able to leverage what I’ve learned from my dad’s and family’s experiences to help with my own. Watching them from shore, so to speak, enabled me to navigate this system.

I’ve watched my father and family get by. I’ve seen my mother be a sort of squeaky wheel, with her not-taking-no-for-an-answer attitude. She taught me not to be overwhelmed by doctors and leap into action.

I learned to go, “Alright, something’s going on — so I need to resolve this as fast as possible. Everyone out of my way. I’m not going to wait around. I’m calling everyone I know. I’ll find the best doctor. I’ll double-check all of this. I’ll get in there and befriend all the doctors and nurses.”

It’s the opposite of being overwhelmed by scary information that you’d rather not know. I’m not like that. I’d like to know everything and take it on, so I don’t have to think about it anymore.

Todd-Strauss-Schulson-straussschulson and living with PV

Tracking My Symptoms and Integrating PV Into My Life

I don’t particularly track my polycythemia vera symptoms, but I’m quite aware of when something’s wrong, and I go, “John, what’s this?”

I don’t write my symptoms down. But I do have a list or litany of things my team helps me keep abreast of. Night sweats, nausea, headaches, fatigue, and so on. I usually say “No” to most, and sometimes “Yes” to others.

I am not PV. I have it. It’s part of me. It’s not the whole me. Finding that balance is really important.

The more you talk about something or say something, it’s as if you’re casting a spell. I don’t want to talk about PV all the time, as if it’s my whole identity now. I’d rather integrate it into my life by finding that balance between keeping it part of me and making it my entire identity.

I think both of those things are too extreme. Integrating it, I think, is a useful way to navigate your world.

I don’t want to talk about PV all the time… I’d rather integrate it into my life by finding that balance between keeping it part of me and making it my entire identity.

Building a Relationship With My Care Team

Being a great doctor is a lot like being a director in terms of how they coordinate and communicate.

As a director, I have to shape-shift all the time. Every actor needs to be spoken to differently. Some like to rehearse a lot while others like to improvise. Some actors like to be really serious while others like to joke. Some like a lot of attention while others want to be left alone, and they don’t tell you that. You have to intuit it.

So if you’re on a shoot day and you have eight actors and each has a different way of working, one of the big parts of your job is to be able to bounce around and know how to deal with them all, while you’re doing a thousand other things.

It’s difficult. The best doctors work like directors, working seamlessly with people. It’s not a one-size-fits-all thing, and I guess if you feel like your doctor’s not doing that, you could say something.

The hardest part of the job is that many patients are a handful. They’re in terrible moods. They’re angry. They’re grouchy. Of course, they’re in pain. They’re really scared.

You can’t expect consistency and elegance when someone is in fear and pain. But as a patient, if you meet a new doctor, you’re trying to get diagnosed, but you’re also trying to forge a relationship. So you can also show up in a way that makes them want to work with you.

When I met Dr. Mascarenhas for the first time, I wanted to be his and the nurses’ favorite patient. I wanted them to be relieved when I’m on the schedule. That’s partly my nature; I joke around, and I try to keep it light and funny.

But it’s also because being easy to deal with helps foster a stronger relationship with someone than if you show up yelling and acting as if you know what to do. It goes both ways, even though the doctor’s got all the power in that situation. But a patient can also do a lot.

I’m Living My Life

One of the great things that Dr. Mascarenhas said to me when we first met was, “Managing polycythemia vera is all about quality of life, but it’s your life, so get out there and live it. Don’t sit around and panic all the time.”

I feel very viscerally about that. Seeing my father progress through his illness might have had something to do with it — as well as having my own issues.

I feel very strongly that you only get a certain amount of time here. And even if your health is compromised, you’ve still got that finite amount of time.

We can see it as straddling the line between the healthy and the sick. Every six weeks, I go to an infusion center that’s full of people getting treatments. Then I come back into this other world where health isn’t a concern and everyone’s focusing on making money and having families instead.

It makes you live with more gusto. You never know when things could worsen. I could learn that my PV is progressing, that it’s getting worse, that I need a bone marrow transplant, or something like that.

And so, for as long as I’ve got this body and this energy, I want to throw myself into the world, because it’s so clear that things won’t last forever.

Weirdly, I feel this is the blessing of having a disease like this. It makes it obvious that your life is not forever — which can be all too easy to ignore when you’re healthy, and then you can just take things for granted.

I had to learn to manage my anxiety in my mind and body. The gym, meditation, therapy, acupuncture, and attending long silent retreats are all helpful. Those are a whole scaffolding of things that help manage fear.

I feel very strongly that you only get a certain amount of time here. And even if your health is compromised, you’ve still got that finite amount of time.

Dr. Mascarenhas asked me if I would want to speak at this blood cancer gala in New York. “It’s kind of a big deal,” he said. “Bradley Cooper was going to speak, but he had to back out. Would you want to do it?”

I accepted the invitation. I wrote a funny speech that was as honest and vulnerable as I could muster. I don’t think I realized how profound it was going to be until after I had delivered it. It felt a little lonely, though; no one was with me as I did it.

Having polycythemia vera was never something that I kept a secret. I thought that having it as a shameful secret actually felt like a whole other kind of cancer. Just some other thing that you’re burying down that’s only going to start to curdle.

I made videos that were kind of an extension of that speech. They were unique opportunities to process all of this stuff through my art form. I thought it would be great to gather a crew and be on camera, and tell my story.

The premise of the videos was that Dr. Mascarenhas and my care team are fighting for my quality of life. And so the videos would involve Dr. Mascarenhas going on a date with me, basically, for a crazy day in New York, and actually see the life he’s saving. He wouldn’t know what I had planned for that day — a trapeze class, or diving, or driving a convertible, or taking a tango lesson. I see him at his job when I consult him — and this would allow him to experience my life firsthand.

Dr. Mascarenhas was quite eager to do it. Getting to have that time with him was pretty important for our relationship, and was certainly unique. Of course, a lot of patients wouldn’t be able to do anything like that with their doctors, but our banter is really quite evident in the video.

Part 1: “Get Out There and Live It”: A Doctor-Patient MPN Story

Part 2: Join an MPN Patient and his Doctor on an NYC Adventure

I’m hoping the video can serve as a model for other patients and doctors, too.

My Advice for Those with PV or Another MPN

Everyone’s MPN is different. You have to get a great team of doctors together to help you somehow, because you can’t do it alone. It also makes you feel so much more at ease when you feel like someone’s got you.

I think being aware of your body is important, but having a disease makes you pretty aware of your body already.

When you learn that you have a disease like polycythemia vera or another MPN, you can buckle under the strain and complain, “Why me?”, pull away from the world, and become a hermit. Of course, I sometimes do that, and wish I didn’t have to deal with this and that I could just be carefree.

But, you see, PV can be viewed as a gift. You can use it as a way to be as present in your life as possible. Because you can be hyper-aware of how fragile your life really is.

And so that would be my advice: to see PV or another MPN as a gift — and to figure out that there’s a gift within every experience, even terrible ones.

It’s your job to figure out precisely what that gift is. What’s that experience giving you? What’s it teaching you? How can you make something good from it?

Not to be a Pollyanna about it. To be honest, it’s not all roses. It doesn’t feel good to get phlebotomies all the time, to have to go to the doctor frequently, or to be unable to go on vacation for longer than a few weeks at a time because of my phlebotomy regimen.

It’s a pain and it’s lonely. But it sets you apart and makes you unique. It gives you a unique access point to life.

That would be my advice: to see polycythemia vera or another MPN as a gift — and to figure out that there’s a gift within every experience, even terrible ones… Not to be a Pollyanna about it. To be honest, it’s not all roses.

Special thanks again to Incyte for supporting our patient education program. The Patient Story retains full editorial control over all content.

Thank you for sharing your story, Todd!

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From Athlete to Advocate: Bryon’s Experience with Multiple Myeloma

Post author By Chris Sanchez
Post date June 30, 2025
No Comments on From Athlete to Advocate: Bryon’s Experience with Multiple Myeloma

June 30, 2025

From Athlete to Advocate: Bryon’s Experience with Multiple Myeloma

Bryon found out he had multiple myeloma in 2018 at the age of 54. He was active, health-conscious, and had no family history of cancer. However, he started experiencing suspicious symptoms: elevated protein levels during routine check-ups and a lingering finger fracture from basketball.

Bryon’s primary care physician pieced these issues together and referred him to specialists. Ultimately, an oncologist confirmed that he had multiple myeloma. Initially confused about the nature of multiple myeloma, Bryon soon started taking proactive steps. He sought out second opinions, researched treatment options, and, most importantly, advocated for himself and asked his doctors questions.

Bryon’s treatment plan involved six months of chemotherapy, followed by a high-dose chemo regimen and, finally, an autologous bone marrow transplant. Luckily, his genetic makeup made the standard treatment particularly effective. He initially refused to consider clinical trials, but his experience later convinced him that they could be worth joining. He now encourages others to consider participating in such trials.

Physical activity played a major role in helping Bryon recover from multiple myeloma. He made it a point to remain as active as he could, which eased tough side effects like “chemo brain” and helped him stay mentally strong and emotionally resilient. His insurance and business ventures provided financial stability, allowing him to focus on his health and reduce the stress he felt.

After his multiple myeloma treatment regimen ended, Bryon’s life took on new meaning. He now works with The Leukemia & Lymphoma Society, where he focuses on community outreach and supports patients and families affected by multiple myeloma. Through his work, he emphasizes the importance of getting diagnosed early, understanding one’s body, and pushing for answers when something feels wrong.

Through his story, Bryon wants to stress that multiple myeloma is often characterized by vague symptoms — making awareness and early diagnosis vital. He wants to encourage people to stay informed, have regular check-ups, and never underestimate the power of self-advocacy.

Read Bryon’s story and watch his video for more:

What an unhealed finger injury revealed about his health
The role of self-advocacy in Bryon’s multiple myeloma diagnosis
How staying active helped him cope with chemotherapy
Bryon’s surprising and inspiring reaction to his cancer diagnosis
Lessons from Bryon’s experience with multiple myeloma

Name:
- Bryon D.
Age at Diagnosis:
- 54
Diagnosis:
- Multiple Myeloma
Symptoms:
- Elevated protein levels in urine and blood
- Finger bone fracture that refused to heal
Treatments:
- Chemotherapy
- Autologous bone marrow transplant

Thank you to The Leukemia & Lymphoma Society for supporting our 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 for treatment decisions.

Table of Contents

About Me
How I Found Out I Had Multiple Myeloma
My Reaction to My Diagnosis
My Multiple Myeloma Treatment Plan
- My Story Continues Below
Program Highlight: Multiple Myeloma: Creating Diverse Treatment Options through Clinical Trials
For the rest of this interview, watch our program replay ON DEMAND.
- Back to My Story
How I Handled My Multiple Myeloma Treatment
How My Experience Has Changed Me
What Survivorship Means to Me
What People Need to Know About Multiple Myeloma
My Advice to Others

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

I know, you can’t just turn on a dime. But it’s so important to do what you need to do, and change what you need to change, as quickly and early as you can. It can extend your life.

About Me

My name is Bryon. I’m a multiple myeloma survivor. I was diagnosed in 2018 at the age of 54. I’m the only person I know in my family who’s had cancer.

I was an athlete in my youth, and I continue to try to live and stay healthy. I’ve been married for 33 years. My wife and I have three kids.

When we discovered that I had cancer, it was life-changing, to say the least. So, like many other patients, we have our own story. And my journey led me to the role I have now. I’m the national community outreach manager for the Myeloma Initiative at The Leukemia & Lymphoma Society.

How I Found Out I Had Multiple Myeloma

I have good major medical insurance. My primary care physician would diligently check me out. And my multiple myeloma story started when he found suspiciously elevated protein levels in my urine and blood. Over the succeeding months, he began to suspect that this elevation might not be related to my lifestyle.

One day, I was out playing basketball with some 20- and 30-year-old guys. I tried to catch a ball, and I bent my finger back. Now, I’ve had this kind of injury many times before, but this particular one just refused to heal, which was ominous.

I had a doctor check it out, and they found a fracture. I went back to my PCP and told him what happened. He put two and two together and said, “This is an unusual scenario. Let’s check this out alongside your elevated protein levels.”

I found out that I was experiencing kidney dysfunction. My PCP referred me to a specialist. I ended up going to a nephrologist, a hematologist, and, finally, an oncologist.

The oncologist recommended that I undergo an immediate biopsy. I had it done after the day we met.

Two days later, the results came back. The diagnosis was multiple myeloma.

… when things were straightened out, I hunkered down. I said, “Okay, we’re going to figure out how we can beat this.”

My Reaction to My Diagnosis

When I heard the doctor say, “You have multiple myeloma,” I got confused initially. I actually thought I had melanoma. It turns out that I’m not alone in this and that the two are often confused.

But when things were straightened out, I hunkered down. I said, “Okay, we’re going to figure out how we can beat this.”

I was preparing for the worst-case scenario after the battery of tests I’d gone through. But didn’t sink in until I started getting chemotherapy. This is life-threatening, and I may not have much control over it.

Multiple myeloma isn’t a type of cancer where you can focus and pinpoint one particular area or organ. It doesn’t manifest as a solid tumor. It’s in the blood, and it runs throughout your entire system.

My Multiple Myeloma Treatment Plan

My oncologist suggested that I consider a clinical trial. I thought about it and declined. I wanted to understand the standard treatment for multiple myeloma for a patient like me.

I ended up doing chemotherapy for six months; a higher-dose regimen of chemotherapy to flush out any remaining traces of myeloma; and then an autologous bone marrow transplant, which means that my own body was the source of the T-cells that were reintroduced.

I was fortunate to have been able to undergo the autologous transplant. The doctors were able to harvest enough T-cells to make my treatment possible. Not everyone who needs stem cells can get the cells they need from their bodies. Most people have to look for a donor.

Later on, I also learned that something about my genetic makeup made the standard treatment favorable for me. I can’t give you the scientific or medical term for it, but there it is. So the choice of standard treatment turned out to be optimal for me.

I did learn more about clinical trials after that — of course, I did start working in this role. Patients should always check with their doctors to see if clinical trials are a possibility for them and to learn more about what these trials can do for them. And if they need to get a second opinion, they should do so too.

My Story Continues Below

Program Highlight: Multiple Myeloma: Creating Diverse Treatment Options through Clinical Trials

I spoke with Dr. Ajai Chari of the University of California San Francisco (UCSF) about the latest breakthroughs in multiple myeloma treatment, including CAR-T cell therapy, bispecifics, and why clinical trials are critical for expanding options for all patients. Here’s an overview of our discussion.

Dr. Ajai Chari: This is my passion, the personalization of therapy. There are no two patients alike. And you can read about a clinical trial, you can go to a patient support group, you can talk to a friend, but that doesn’t mean that’s the right treatment for you.

Dr. Chari: We’ve had hospice conversations with some people. “Let’s try this study.” And those patients are now in their deepest and durable remissions in their entire myeloma journey, despite having had all those drugs. And I think that’s a clear example. If you’ve run out of options, then you should be looking for new strategies, right?”

Dr. Chari: Myeloma is not one of the most common cancers, which are usually breast, colon, prostate, and lung. I bring that up because if you’re a patient that’s diagnosed in the community, chances are your oncologist is very experienced with those cancers, but maybe not as much with myeloma. And studies show that outcomes for patients who are affiliated in some way with an academic center do better.

Dr. Chari: Fifty percent of that information in a first cancer visit goes in one ear and out the other because you’re dealing not only with the diagnosis of the cancer and the intellectual questions, but the emotional part. So I think it’s always good to have a friend or family member to listen in on all of your conversations, so that they can help catch some of the things you might have missed.

Dr. Chari: The number one thing patients are looking for is hope. I think they want to know that they’re going to be able to live as long as they want to live — and with a good quality of life.

For the rest of this interview, watch our program replay ON DEMAND.

Learn what’s changing, how it impacts treatment decisions, and what it all means for patients today.

Webinar: CLL Treatment Advances: Moving From Research to Reality

Hosted by The Patient Story

The world of CLL treatment is evolving fast, with new breakthroughs offering more options. This program breaks down the most important updates from recent research and clinical trials.

Back to My Story

How I Handled My Multiple Myeloma Treatment

It really helped that I’ve remained physically active as I’ve gotten older.

We all know that as we age, it’s important to take care of our bodies. They heal a lot slower than they used to, and so we may not be able to do what we used to do when we were in our 20s and 30s.

It’s more than just a physical thing. Being active also helped with my mental and emotional state. Exercise helps our bodies secrete hormones and endorphins, those substances that give us a positive sense of being.

Exercise also helps counter some of the side effects of treatment. There’s a mental component to chemotherapy that’s called “chemo brain.” A heavy dose of chemo can definitely impact behavior. It can cause depression and can be debilitating overall. And exercise can help deal with that.

Secondly, in a financial sense, the stars were also lined up in my favor. I was a business owner — I owned an insurance agency and a web hosting business — which generated income without me getting too involved. Because of that, I didn’t have to worry so much about what I needed to do about income while I was undergoing treatment.

I also had good major medical insurance, too, as I mentioned earlier. And we had bought an athletic policy back in 2007, which handled a lot of the cancer debt.

Cancer can be expensive, and if you’re not prepared, it can lead to catastrophe. I’ve seen how it affects others who’ve had to leave work to care for ill family members, whose kids have had to leave school, who’ve had to get mortgages, and so on. It motivated me to find out what I can do to help solve that problem when I could be a productive citizen again.

Lastly, I also leaned on my faith quite a bit to help me get through my treatment.

I consider myself blessed. I got out there and did the work when I could do it again. It was a purpose-driven mission for me.

I consider myself blessed. I got out there and did the work when I could do it again. It was a purpose-driven mission for me.

How My Experience Has Changed Me

People I’ve spoken to who’ve also been diagnosed with a life-threatening malignancy and have been successfully treated for it, come out the other side a little bit different. If they took things for granted before, they don’t anymore. They come away with a higher sense of appreciation for things.

My multiple myeloma experience has made me more vulnerable, and I’ve been able to tell my story without feeling like I’m exposing myself. And it’s to help people get something out of it. My job is to inspire them, help amplify their passion, and elevate them, and also to consider that I reach people I don’t know I’m touching. When you get out on stage and tell your story, you don’t know who might be listening.

I watch other folks who are great at storytelling and try to learn from them. Some days, when I go out there, it’s hit or miss. I feel like I didn’t hit a target, and that I failed at getting across to my audience. But, hey, that’s par for the course, right?

It’s just like in sports. I recall this Michael Jordan quote where he talked about how many times he tried to make a game-winning shot and missed. But he still did become the best in basketball — because he kept trying and never gave up.

So I take inspiration from him. When you’re in this position and have a voice, you just get out there and don’t worry about not getting across. It’s about getting out there to people who need to hear what you have to say. You never know who’s listening to you. They may never get back to you and say, “Hey, I got a lot out of your talk.”

Sometimes they do, though. And when they do, that’s gratifying.

Health-wise, I’m good. I do get aches and pains, but nothing related to the myeloma. A lot of people come out with lesions on their bones. I was diagnosed early, so I didn’t experience any of those symptoms.

I’m 60 years old and I don’t look my age. That’s what people say, at least. I do feel great. I can still go out and run a few laps around a track. I can still lift weights. And, most importantly, mentally and emotionally, I’m intact. That’s the most important thing.

What Survivorship Means to Me

Survivorship is an interesting word and concept.

Some people have trouble with that term. They’d rather be called “thrivers.” And that’s their personal choice. For me, it’s about coming out on the other end better than I was before. Not just physically, but also mentally and emotionally.

I read some books while I was still going through my journey to help me make sense of what was happening, both to myself and others. It’s an existential experience that makes you question your existence and also makes you want to know what it’s all for.

I would encourage people to focus on their mental and emotional stability. First and foremost, because that’s what’s going to drive you to keep yourself physically healthy. There are ways to do so, even for patients who may not be able to do strenuous physical activity.

For example, I play games on the PlayStation 5 with my son. I was a huge gamer while I was going through multiple myeloma. Because the chemo disrupted my sleep patterns, when I would be struggling to sleep, I would sometimes just turn the PS5 on and start playing games like Spider-Man, The Last of Us, and open world games in general.

Of course, I love those kinds of games, but they were also good for me because they helped me maintain my hand-eye coordination.

If I didn’t exercise, it would have been a challenge to get back into shape when I was better. It might even have been hard to navigate my new bodily reality after my experience.

If I didn’t exercise, it would have been a challenge to get back into shape when I was better. It might even have been hard to navigate my new bodily reality after my experience.

What People Need to Know About Multiple Myeloma

Multiple myeloma is a stealthy disease. There’s no single symptom that you can pinpoint and identify as myeloma. The criteria help narrow the symptoms down, but that said, for instance, you can have bone pain or renal failure from any number of other diseases and conditions. It can be hit or miss.

But what we try to promote more than anything else is how important it is to be aware of one’s own body. Be more conscious of your state of health. Eat right. Stop drinking, stop smoking. I know, it’s easier said than done for most people. Some come from families of smokers or drinkers, or can’t access healthy food.

There are a lot of things that you can tell people that may not resonate with them, because they might just not be able to access the solutions you’re talking about. But you still have to continue to share what you know.

Talk to your physician or whoever you go to for medical care, maybe someone at a clinic if you don’t have a primary care physician. Be curious, ask questions. Self-advocate. Seek other opinions, be open to the possibility that the first answer you receive might not be the right one.

And get good insurance.

My Advice to Others

You have to be your best self-advocate, and you have to ask questions that may make you feel uncomfortable. It’s for your well-being.

Self-advocacy isn’t really a term that many people are familiar with, but it needs to be something that more people do.

You want to catch whatever it is as early as you can. Early diagnosis is key to recovery.

Don’t be satisfied with a non-answer or be dissuaded when you know you have to see a specialist. I know it’s difficult if and when an insurance company denies you treatment. But you really have to find a way to push through that.

I know, you can’t just turn on a dime. But it’s so important to do what you need to do, and change what you need to change, as quickly and early as you can. It can extend your life.

You want to catch whatever it is as early as you can. Early diagnosis is key to recovery.

Special thanks again to The Leukemia & Lymphoma Society for supporting our patient education program. The Patient Story retains full editorial control over all content.

Thank you for sharing your story, Bryon!

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Samantha’s EGFR+ Stage 2 Lung Cancer Story

Post author By Chris Sanchez
Post date June 26, 2025
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June 26, 2025

Samantha’s EGFR+ Grade 3, Stage 2 Lung Cancer Story

When Samantha was diagnosed with stage 2 lung cancer in 2022, it changed her life dramatically. She says it feels like she’s living two separate lives — one before her diagnosis and the one she’s experiencing now.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

Samantha’s stage 2 lung cancer story started after she recovered from COVID-19 in October 2022. She kept experiencing breathlessness, hoarseness, sinus infections, and fatigue. Doctors said it was long COVID, but she thought it might be something else. She spent the next few months seeing plenty of doctors and trying a barrage of cures such as inhalers, steroids, and antibiotics. But nothing worked. In May 2023, she had an X-ray that revealed a lesion on her right lung. She wasn’t familiar with medical terms and thought a lesion was just a minor injury.

When her follow-ups were delayed, Samantha took matters into her own hands and had a private CT scan. Thanks to this proactive step, doctors discovered a tumor. A quick series of referrals took her to a hospital in Cork, Ireland, for a biopsy. Complications during this biopsy revealed that the tumor was located dangerously close to a major artery. Eventually, she had surgery during which the top and middle lobes of her right lung were removed, as were surrounding lymph nodes and an afflicted airway.

After this surgery, Samantha was diagnosed with grade 3, stage 2 lung cancer with an EGFR mutation. The diagnosis overwhelmed her — especially since she was a non-smoker. But she faced it squarely. Radiation and chemotherapy weren’t viable options for her, and so she joined a clinical trial focusing on a particular targeted therapy. She was both hopeful and honored to be the first post-operative patient in Ireland to try this treatment, which is typically reserved for stage 4 cases.

Samantha struggles with side effects from the treatment for her stage 2 lung cancer, including mouth ulcers, fatigue, brain fog, joint pain, and digestive issues. But she remains grateful, as she knows full well how fortunate she is to be able to access this treatment. Her medical team monitors her regularly and tracks her progress, including by conducting blood tests every few months and scans every six months.

Samantha admits that mentally, coping with the loss of her old self is tough. To process these emotions, she attends counseling sessions, where she finds solace in speaking openly and honestly about the emotional impact of her experience without burdening her loved ones.

Samantha’s experience has taught her the importance of early detection. She also urges others to trust their instincts and to insist on having thorough medical evaluations, even when it feels uncomfortable to do so. Her message is clear: you need to be your own health advocate.

Check out Samantha’s video to learn about:

How her intuition led to a life-saving lung cancer diagnosis.
Samantha’s powerful journey from COVID symptoms to stage 2 lung cancer.
Why she says mental health is key in her cancer experience.
The unexpected symptoms and signs that heralded stage 2 lung cancer.
Samantha’s message: Trust your instincts and advocate for your health.

Name:
- Samantha V.
Age at Diagnosis:
- 47
Diagnosis:
- Lung Cancer
Mutation:
- EGFR
Staging:
- Stage 2
Grade:
- Grade 3
Symptoms:
- Breathlessness
- Hoarseness
- Sinus infections
- Fatigue
- Pain in left side
Treatments:
- Clinical trial: targeted 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.

Thank you for sharing your story, Samantha!

Inspired by Samantha's story?

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More EGFR+ Lung Cancer Stories

Samantha V., EGFR+ Lung Cancer, Stage 2, Grade 3

Symptoms: Breathlessness, hoarseness, sinus infections, fatigue, pain in left side

Treatments: Clinical trial (targeted therapy)

Natasha L., Lung Cancer, EGFR+, Stage 4

Symptoms: Hoarse voice, squeaky breathing, cough, weight loss, fatigue

Treatment: Targeted therapy

Jeff S., Non-Small Cell Lung Cancer with EGFR exon 19 Deletion, Stage 4

Symptom: Slight cough

Treatments: Surgery, radiation, chemotherapy, targeted therapy

Jill F., Non-Small Cell Lung Cancer with EGFR Exon 19 Deletion, Stage 1A

Symptom: Nodule found during periodic scan

Treatments: Surgery, targeted therapy, radiation

Filipe P., Non-Small Cell, EGFR 19del, Stage 4 (Metastatic)

Symptom: Headache
Treatments: Surgery (to remove brain metastasis), cryoablation (to remove kidney metastasis), targeted therapy, SBRT, bispecific antibody

Chemotherapy Colorectal Patient Stories Proctocolectomy Surgery Treatments

This is What Stage 3 Colorectal Cancer Looks Like at 24

Post author By Chris Sanchez
Post date June 24, 2025
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June 24, 2025

Active, Determined, Empowered: Paige’s Life with Stage 3 Colorectal Cancer

Paige was diagnosed with stage 3 colorectal cancer in January 2025. Her experience began in September 2024, when she noticed blood in her stool — a symptom she initially shrugged off, but took more seriously when it persisted. She consulted a couple of doctors, neither of whom were very concerned due to her youth and health status. But Paige continued to push and finally got a colonoscopy. The result? A cancer diagnosis that shocked her to the core.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

Hearing the phrase “colorectal cancer” was terrifying. Paige had always seen herself as healthy: she enjoyed daily exercise, ate a balanced diet, and had no family history of cancer. The diagnosis was surreal, but her partner, family, and friends rallied around her. Her mom was by her side during the procedure and offered welcome comfort when the reality of her diagnosis hit. Paige was reeling and gladly leaned into her support system.

Paige met with her oncologist, and this welcome visit brought some clarity. They agreed on her stage 3 colorectal cancer treatment plan, which was straightforward: six rounds of chemotherapy, followed by surgery to remove part of her colon and rectum. Paige struggled with the side effects of chemo, including exhaustion, nausea, and feeling unlike herself. However, determined to reclaim her life, she powered through and continued working full-time as an engineer. She had an initial six chemo rounds, after which her doctors recommended two more to ensure the best possible outcome before surgery.

Paige’s upcoming surgery will involve the removal of parts of her colon and rectum. Her doctors have told her that she may need to have an ostomy bag, and she’s steeling herself for this possibility. But Paige is focusing on healing rather than the fear of lifestyle changes. She’s expecting her recovery to take about six weeks, with a hospital stay of 2-3 days post-surgery.

Throughout her stage 3 colorectal cancer experience, Paige has drawn strength from her active lifestyle. Inspired by a pro athlete who stayed active during cancer treatment, she’s continued to enjoy her favorite sports — mountain biking, rock climbing, and skiing — when she can. By doing so, she’s felt empowered and less defined by her diagnosis.

Paige’s advice? Never allow a diagnosis to dictate how you live. Stay engaged in activities you love. Keep your spirits high. Paige believes wholeheartedly that sticking to her lifestyle, despite the pain and discomfort she’s experiencing, is key to being resilient. She’s confident that overcoming stage 3 colorectal cancer will make future obstacles feel manageable.

Make sure to watch Paige’s video for more about:

How she stayed active during chemo, and why this is crucial
The symptom she almost ignored: Paige’s early warning sign
Facing cancer at age 24: her unexpected diagnosis
Why maintaining normalcy is Paige’s secret weapon
From diagnosis to determination: her heartfelt reflections

Name:
- Paige S.
Age at Diagnosis:
- 24
Diagnosis:
- Colorectal Cancer
Staging:
- Stage 3
Symptom:
- Blood in stool
Treatments:
- Chemotherapy
- Surgery (upcoming): proctocolectomy

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.

Thank you for sharing your story, Paige!

Inspired by Paige's story?

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Kim’s Stage 2 Ovarian Cancer (2B Clear Cell Carcinoma) Story

Post author By Chris Sanchez
Post date June 23, 2025
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June 23, 2025

How Asking for Help Can Lead to Healing: Kim’s Stage 2 Ovarian Cancer Story

When Kim was diagnosed with stage 2 ovarian cancer (2B clear cell carcinoma) at 46, it opened up a new chapter in her life. Although it was full of medical challenges, it also offered her opportunities for personal growth.

Kim’s health concerns began in September 2020 with pain on her right side, which she chalked up to gas. She started to experience other symptoms over the next months, such as persistent coughing, incontinence, bloating, and night-time pain. These she attributed to asthma, potential menopause, and lifestyle habits.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

But things took an ominous turn in May 2021. Overwhelming pain forced Kim to return to the ER, where a doctor ordered a CA 125 blood test and scans. These uncovered a cantaloupe-sized tumor on her right ovary. The diagnosis was stage 2B ovarian cancer (clear cell carcinoma), an aggressive and rare form.

Kim’s treatment involved a radical hysterectomy, removal of 28 lymph nodes, and six intense rounds of chemotherapy. She experienced harsh side effects, including hair loss. But she took everything in stride, thanks to the strength she found in her faith, her wife Jennifer and her family, and her community.

Kim’s doctors found no evidence of disease in 2022. But Kim’s stage 2B ovarian cancer returned, manifesting as swollen lymph nodes. She underwent more treatments and struggled with the mental toll of recurrent cancer. Kim acknowledged the strain and leaned heavily on her faith and strong support network.

Kim stresses that it’s vital to accept help, as she’s found community support to be profoundly healing.

She urges others to be vigilant about their health, listen to their body, and advocate for thorough medical evaluations. She continues to meet the health challenges brought about by her stage 2B ovarian cancer head-on with hope and a deep appreciation for life’s small yet meaningful joys.

View Kim’s video and learn more about:

How her escalating symptoms led to a diagnosis that changed her life
The crucial role that community support played in Kim’s health journey
How she embraced hair loss with positivity and strength
The mental health challenges of living with stage 2B ovarian cancer
Kim’s advice regarding accepting help and finding hope

Name:
- Kim C.
Age at Diagnosis:
- 46
Diagnosis:
- Ovarian Cancer (Clear Cell Carcinoma)
Staging:
- Stage 2B
Symptoms:
- Coughing
- Incontinence
- Severe bloating
- Nighttime pain
- Hard lump on right side
Treatments:
- Surgeries: radical hysterectomy, lymphadenectomy
- Chemotherapy
- Radiation therapy
- 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.

Thank you for sharing your story, Kim!

Inspired by Kim's story?

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Stage 3 Esophageal Cancer: Daily Habits That Can Bring Meaning

Post author By Chris Sanchez
Post date June 22, 2025
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June 22, 2025

Stage 3 Esophageal Cancer and the Daily Habits That Bring Him Meaning

Dan was 53 when he was diagnosed with stage 3 esophageal cancer (esophageal adenocarcinoma). He led an active lifestyle, ate healthy, and went to the gym regularly. But in June 2022, during a family dinner, he started having chest pains and numbness in his left arm. Thinking it was a heart issue, he rushed to the ER, but the tests they did there were inconclusive.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

Months passed. Dan kept on experiencing chest pain and struggled to swallow. Doctors thought he had heartburn and gastroesophageal reflux disease, and treated him with over-the-counter medications that didn’t help. His symptoms got worse, and by early 2023, Dan could no longer swallow solid food and survived on homemade protein shakes. Frustrated and alarmed, he pushed for an endoscopy, which revealed a 10-cm mass — half the length of his esophagus. The diagnosis: stage 3 esophageal cancer.

Dan’s treatment included five chemotherapy cycles, surgery to remove part of his stomach and esophagus as well as afflicted lymph nodes, and three more chemo sessions. Before surgery, he gained 12 pounds, since he felt that recovering from the procedure would be tough. After surgery, he was told, “We got all the cancer,” which was a profound relief.

Even though Dan’s stage 3 esophageal cancer surgery was successful, his life afterwards isn’t without challenges. He manages physical restrictions, eats smaller meals due to his changed digestive system, and copes with significant side effects like brain fog and memory lapses. But he remains physically active, journals for mental clarity and to ensure he doesn’t forget important things, and advocates for esophageal cancer awareness through support groups and fundraising efforts.

And most of all, Dan stays positive and feels blessed. He says, “Whatever I lost through this experience, I’ve gained in so many other areas of my life.”

Dan’s story highlights his faith and resilience and how it’s been shaped by his gratitude and sense of purpose. He encourages others to cherish every moment of their lives, get screened for cancer, advocate for themselves, and support cancer research. He urges others to understand that health setbacks don’t define us — just as his own did for him, they can inspire growth and lead to new beginnings, too.

Watch Dan’s video and discover:

How the chest pains he experienced led him to uncover stage 3 esophageal cancer.
What finally revealed Dan’s true health issue.
How he stayed strong through chemo, surgery, and life after cancer.
Why Dan advocates for esophageal cancer awareness and early screenings.
The small but significant daily habits that help Dan live fully after his cancer treatment.

Name:
- Dan R.
Age at Diagnosis:
- 53
Diagnosis:
- Esophageal Cancer (Esophageal Adenocarcinoma)
Staging:
- Stage 3
Symptoms:
- Trouble swallowing food
- Fatigue
- Daily chest pains
Treatments:
- Chemotherapy
- Surgeries: esophagectomy, partial gastrectomy, lymphadenectomy

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.

Thank you for sharing your story, Dan!

Inspired by Dan's story?

Share your story, too!

Louis D., Gastrointestinal Stromal Tumor (GIST)

Symptom: Feeling the need for constant urination
Treatments: Surgery to take out the tumor, maintenance chemotherapy (3 years)
...

Lauren C., Stomach Cancer, Stage 1, CDH1+

Symptoms: Irregular bowel movement (stomach bile), extreme pain eating certain foods or drinking alcohol

Treatment: Total gastrectomy (surgery to remove whole stomach)
...

Viola K., Stomach Cancer, Stage 4

Symptoms: Persistent fatigue, weight loss, occasional pain, persistent weakness

Treatments: Chemotherapy (FLOT), HIPEC (Surgery + Hot Chemotherapy), 2nd intestinal surgery
...

Alyssa B., Stomach Cancer, Stage 4

Symptoms: Fatigue, elevated resting heart rate, heartburn, difficulty swallowing, weight loss
Treatments: Chemotherapy, surgery (gastrectomy & oophorectomy)
...

Jeff S., Stomach Cancer, Stage 4

Symptoms: None; found during the evaluation process for kidney donation
Treatments: Surgery (partial gastrectomy & nephrectomy), chemotherapy (oxaliplatin & capecitabine), radiation
...

Brittany D., Stomach Cancer, Stage T1b

Symptoms: Choking suddenly while eating and attempting to speak; neck and right shoulder pain; neck tightness; trouble swallowing certain food items

Treatments: Surgery (subtotal gastrectomy, D1 lymphadenectomy, gastric bypass)
...

Chemotherapy Lung Cancer Lung resection Patient Stories Rare Surgery Treatments

How Vigilant Screening (For a Different Disease) Found Alexis’s Stage 3 Lung Cancer

Post author By Chris Sanchez
Post date June 18, 2025
No Comments on How Vigilant Screening (For a Different Disease) Found Alexis’s Stage 3 Lung Cancer

June 18, 2025

How Vigilant Screening (For a Different Disease) Found Alexis’s Stage 3 Lung Cancer

Alexis was only 29 when life threw her an unexpected twist, and she was diagnosed with stage 3 lung cancer (specifically, a stage 3A neuroendocrine tumor) in July 2022. Before her diagnosis, she experienced symptoms like shortness of breath and a strange need for deep yawns, which she attributed to anxiety. Looking back, she realized that these signs had been quietly lingering since her college days.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

Alexis’s diagnosis came almost by accident. Concerned about a potential genetic heart condition her father had, she underwent a series of tests. An echocardiogram revealed an abnormality, leading to a CT scan that unveiled enlarged lymph nodes. Despite initial reassurances from her doctor, further tests at the University of California San Francisco (UCSF) confirmed the presence of a spot on her lung. A biopsy later confirmed the truth: it was stage 3A rare lung cancer, a neuroendocrine tumor — quite rare and not the usual kind found in the lungs.

Interestingly, since 2019, Alexis had known that she had a BRCA2 gene mutation and had stayed vigilant with screenings for breast and ovarian cancers. The shock, therefore, came from an unexpected corner: her lungs. Despite not having a history of smoking, she fit the profile of rising lung cancer cases among young women. Her assumption leaned towards non-small cell lung cancer, but reality painted a different picture.

Alexis experienced a rollercoaster of emotions when navigating her diagnosis. Initially relieved when told her tumor was a typical carcinoid, she soon faced the complexity of her condition. Her tumor was atypical, sitting on the edge between two classifications. This distinction influenced her treatment options. Surgery was the cornerstone, and despite hopes of lung-sparing measures, she ultimately lost her entire left lung.

Alexis’s recovery from stage 3A rare lung cancer was painful but illuminating. Her breathing improved post-surgery, highlighting symptoms she hadn’t realized were problematic. Facing chemotherapy decisions, she chose a pill regimen over IV treatments, managing side effects like nausea with the support of medication.

Her follow-up scans brought relief: clear results signifying no evidence of disease. But the shadow of uncertainty lingers. Alexis grapples with the fragility of life plans once taken for granted, such as marriage, children, and simple joys like walking and baking. Remarkably, she met her now-husband just five months before her diagnosis, and his unwavering support became a beacon during her darkest days.

Alexis’s story isn’t just about facing stage 3A rare lung cancer; it’s about confronting vulnerability, redefining what a fulfilling life looks like, and relishing the unexpected depths of support from friends and loved ones. Her experience challenges stereotypes about caregiving and emphasizes the importance of knowing oneself amidst life’s unpredictability.

Watch Alexis’s video and learn more about:

How a routine heart check led her to an unexpected lung cancer diagnosis
Alexis thought she just had anxiety — until she discovered it was stage 3A rare lung cancer
What losing a lung taught Alexis about life, love, and breathing easier
From hypochondria to rare cancer: her surprising health journey
How Alexis is rewriting her story after her rare lung cancer experience

Name:
- Alexis C.
Age at Diagnosis:
- 29
Diagnosis:
- Rare Lung Cancer (Atypical Lung Neuroendocrine Tumor)
Staging:
- Stage 3A
Symptoms:
- Intermittent shortness of breath
Treatments:
- Surgery: lung resection
- 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.

Thank you for sharing your story, Alexis!

Inspired by Alexis's story?

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Nevin Isn’t Letting Stage 4 Hodgkin Lymphoma Define Him

Post author By Chris Sanchez
Post date June 17, 2025
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June 17, 2025

Nevin Isn’t Letting Stage 4 Hodgkin Lymphoma Define Him

Nevin’s story is one of resilience, self-advocacy, and navigating life’s unexpected turns having been diagnosed with stage 4 Hodgkin lymphoma. His experience underscores the importance of trusting your instincts when it comes to your health.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

It all began with a relentless cough that didn’t improve even after Nevin quit smoking. Then came the intense itchiness, feeling like bugs crawling under his skin, and a persistent fatigue that made simple tasks overwhelming. Doctors thought he had asthma and eczema, but Nevin knew something was off. It wasn’t until he discovered a hard lump on his neck before his best friend’s wedding that everything changed. An urgent care doctor quickly connected the dots, leading to tests and a biopsy confirming stage 4 Hodgkin lymphoma.

Through all the hospital visits, treatments, and life adjustments, like having to leave his job in Los Angeles and move back home, Nevin remained grounded. He found strength in self-advocacy, pushing for answers when the initial diagnoses didn’t sit right. Mental health became a priority, as did surrounding himself with supportive people. Even on tough days, he focused on staying active and cherishing his good days.

Nevin emphasizes not letting cancer define who you are. The activities you love, the dreams you chase — they’re still part of you. Although his treatments brought significant side effects like nausea, dizziness, and even red-colored urine, Nevin’s mindset stayed strong. He capitalized on his good weeks, maintained strong connections with loved ones, and kept hope alive.

Nevin also confronted tough topics like financial concerns, survivorship, and fertility, grappling with the possibility of not being able to have biological children post-chemo. It was a reminder of life’s unpredictability, but also of the privilege of choice, even when options are limited.

Nevin’s stage 4 Hodgkin lymphoma story is a testament to the power of hope, self-advocacy, and community. It’s about facing life head-on, even when the cards you’re dealt aren’t ideal. His experiences resonate with anyone navigating serious health challenges, highlighting the universal need to listen to your body, speak up, and hold on to what makes you you.

Watch Nevin’s video to find out more about:

How a simple cough led to his life-changing stage 4 Hodgkin lymphoma experience.
Why trust in your gut can be your best medical advocate.
How cancer doesn’t have to affect one’s self-identity.
The emotional challenges of putting your dreams on pause for health.
Nevin’s candid reflections on fertility, mental health, and hope.

Name:
- Nevin S.
Age at Diagnosis:
- 28
Diagnosis:
- Hodgkin Lymphoma
Staging:
- Stage 4
Symptoms:
- Bad cough
- Severe skin itch, especially on the legs
- Extreme fatigue and dizziness
- Night sweats
- Lumps in the neck and armpit
Treatments:
- Surgery: lymphadenectomy
- 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.

Thank you for sharing your story, Nevin!

Inspired by Nevin's story?

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How to Support Someone with Cancer: Karina & Jesse’s Myelofibrosis Story

Post author By Chris Sanchez
Post date June 12, 2025
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June 12, 2025

Supporting Someone with Cancer: Karina & Jesse’s Myelofibrosis Care Partner Story

When Karina was diagnosed with myelofibrosis during pregnancy, her husband became her anchor, learning how to support someone with cancer. This is their story of how he navigated the uncertainty, advocated for her care, and found strength in the face of the unknown. Together, they faced each new challenge, showing the vital role care partners play in the cancer journey.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Karina’s symptoms included excruciating abdominal pain, fatigue, anemia, and neuropathy. But she was determined to get on with her life. She balanced her health challenges with pursuing a nursing career, caring for her family, and maintaining a positive outlook thanks to her spirituality. Jesse’s role as her myelofibrosis care partner was crucial. He didn’t just provide emotional support, but also became her advocate, researcher, and biggest cheerleader.

As Karina’s condition progressed, it became evident that she needed to have a stem cell transplant. She and Jesse struggled to find a match until their son, David, turned out to be her perfect donor. When they discovered this, they were filled with profound gratitude and hope.

Post-transplant life brought its own set of challenges. Accepting the new version of herself wasn’t easy for Karina, but her strength lay in accepting change with grace. Together, Karina and Jesse advocate for the power of mindset in dealing with life’s toughest hurdles, the importance of supportive care partnerships, and the urgent need for minority representation in stem cell donor registries.

Read Karina and Jesse’s story and watch the video for more on:

How her faith helped turn her cancer diagnosis into a story of hope.
The life-saving hero who was living under Karina’s roof all along.
How Jesse’s role as Karina’s myelofibrosis care partner redefined love and support.
Why increasing diversity in bone marrow registries can save more lives — Karina’s heartfelt plea.
Her courageous acceptance of change after her transplant.

Name:
- Karina H.
Age at Diagnosis:
- 34
Diagnosis:
- Myelofibrosis (MF)
Mutation:
- Janus kinase 2 (JAK2) gene
Symptoms:
- Severe abdominal pain in left quadrant
- Abnormal blood work
Treatments:
- Chemotherapy
- Stem cell transplant

Thank you to Karyopharm Therapeutics for supporting our 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 treatment decisions.

Table of Contents

About Us
How Our Myelofibrosis Care Partner Story Began
Karina’s Myelofibrosis Diagnosis and How We Took It
Karina’s Symptoms Progressed
How We Took Back Control After the Diagnosis
Hope Helped Us Build Up to Karina’s Stem Cell Transplant
Preparing for Karina’s Transplant
Our Son David Was Karina’s Stem Cell Donor
Life After Karina’s Transplant
What We Want Other MPN Patients to Know
Our Advice for Other Caregivers and Care Partners

I underwent a lot of sadness, hardship, and difficulty, and all that entails. But I pressed forward in hope for sure.
There was a lot of hope that just kept me going all those years.

About Us

Karina: Hi, I’m Karina. My friends and family describe me as very constant. I’m very faithful, very devout, and also very resilient. I’ve always been able to rise above what I’ve been facing.

Jesse: Hey, I’m Jesse. Most people would describe me as loyal. If anyone needed anything from me, I would drop everything and help them out. That’s me in a nutshell.

Jesse and Karina H. myelofibrosis care partner

How Our Myelofibrosis Care Partner Story Began

Karina: In December 2016, I had an unexpected miscarriage. I went through the process of losing my child, and then started to move on with my life.

I went back to school. At the time, I was doing clinical rotations as part of the licensed vocational nurse (LVN) program. In April, I was on one rotation. I suddenly started having an excruciating left upper quadrant abdominal pain that wouldn’t go away.

The pain kept me up that night. It felt like I had a bowling ball inside my abdomen. I had to go to urgent care, where they did my bloodwork. They determined that my bloodwork was abnormal, alarmingly so — but they also found that I was pregnant again.

They told me, “These aren’t good numbers. We need to do a bone marrow biopsy right away.” But they also said, “We don’t know if you’re going to be able to carry this baby.”

I asked the doctor, “Are you sure we can’t wait until I have the baby? Is there anything else that we can do?” And he said, “No, this needs to happen immediately.” When I heard that, it was like I went into a fog.

Jesse: The baby was our biggest concern. Karina had miscarried some months before, as she mentioned. And of course, never in a thousand years did we think that she was going to get diagnosed with something as serious as this.

They told me, “These aren’t good numbers. We need to do a bone marrow biopsy right away.”
But they also said, “We don’t know if you’re going to be able to carry this baby.”

Karina’s Myelofibrosis Diagnosis and How We Took It

Jesse: The first doctor went straight to the point. She told Karina, “I’m not going to sugarcoat this. You’ve got myelofibrosis. It’s a rare kind of cancer. You’ve got ten years to live.”

The second doctor, though, went, “Whoa, we don’t know if it’s ten just yet. It might be, considering your age and where you are right now in its progression.”

But it didn’t matter at that point. I think I spaced out when the first doctor mentioned ten years. I don’t think we got anything out of the rest of the conversation.

We left the hospital without saying a word, and when we got back to our car, we just looked at each other and started bawling. And then we went, “Oh, we have so many questions about the baby and the cancer.”

Karina: I really couldn’t believe what the doctors were telling us. I mean, it was definitive, we knew that — I did have a bone marrow biopsy after all. But like in the movies where things go radio silent, after I heard the diagnosis, I couldn’t process things any longer.

I was hearing about donors and transplants and being told, “We’re just going to have to see how this pregnancy goes,” but it was all in little bits and pieces. I couldn’t gather myself.

Karina’s Symptoms Progressed

Karina: We found that the majority of the pain I was experiencing was because of my spleen. It would put tremendous pressure on my left and touch off persistent pain that would radiate to my back and shoulder. Because of it, I had to sleep on my right side for years.

I also discovered that I was anemic and began to feel significant fatigue. So I needed to undergo blood transfusions. And then, of course, the mental impact of discovering my pregnancy and being diagnosed with cancer amplified my fatigue.

I also began to experience neuropathy. I suffered from a burning feeling in my fingers and toes. It felt like someone had taken a torch to them. I remember being in a store and having to step outside it and remove my shoes because I thought I might have ants in them that were biting me.

Jesse looked up and researched all these things I was experiencing. He told me, “We’re going to get a second opinion at MD Anderson in Houston.”

Jesse: As a husband, I got into this fight-or-flight mode. I thought, “I don’t want to lose her. What do I do, what can I do? I’m not a doctor, I don’t know what we’re dealing with, and neither does she.” So we needed to educate ourselves.

The one thing that we kept hearing over and over was “We know what myelofibrosis is, but we’ve never dealt with a pregnant myelofibrosis patient.” Hearing that from a doctor didn’t sit well with me.

Karina: The doctors orchestrated my plan of care. I ended up having a local doctor, but at the same time, I also had someone in Houston who monitored my care.

Jesse: In Houston, they told us, “You’re going to be able to have the baby,” which was wonderful to hear. They said, “We’re going to enter a watch and wait phase,” meaning they would closely monitor Karina without treatment until any symptoms arise.

They added, “You’ll be able to nurse the baby, too. Once symptoms start manifesting themselves and we’re ready, we’re going to aggressively treat this cancer.”

… they told us, “You’re going to be able to have the baby,” which was wonderful to hear.

How We Took Back Control After the Diagnosis

Karina: We learned more about myelofibrosis. We found out that it’s a kind of chronic leukemia and it also is a kind of cancer called a myeloproliferative neoplasm (MPN).

Patients are literally in a state where they’re watching and waiting for symptoms to manifest. They don’t have control over when they stop taking certain treatments, like oral chemotherapy and blood transfusions, and certainly not when they start experiencing symptoms, such as night sweats and bone and spleen pain.

After I was diagnosed, I waited two years before I shared what I had with people. Firstly, because I didn’t look sick, and unfortunately, too many people stereotype cancer patients as being without hair, looking frail and sick, and so on.

I had all my hair, looked healthy, and acted healthy, too. From day one, I wanted my kids to see me as a strong mom who could still get up and get things done, continue to work, take them to and fetch them from school, and so on.

I not only managed that with the help of Jesse my myelofibrosis care partner, but also ensured that my spirit wasn’t shaken and that I had control of how my mindset was going to be. Because in the watch and wait phase, I was determined to stay in sync with my faith and my conviction that I was going to smile during the storm.

Being in that watch-and-wait phase helped me build a lot of resilience. I needed to be patient with how long my treatment was going to take. At the time, I had no idea that it would be six long years later that I would have my transplant.

Hope Helped Us Build Up to Karina’s Stem Cell Transplant

Karina: That six-year period was long and heavy, and brought me to my knees. But I can summarize it as praising in the storm and staying so focused on that.

This was not going to be my forever. I was determined to do whatever I had to do to get through it.

I learned so much through trial and error. I suffered greatly from gastrointestinal tract issues and had to be in the restroom all the time. I was challenged emotionally, mentally, and physically — but never spiritually.

I continued going to MD Anderson, monthly or however often they asked me to come over. I pushed through my education to graduation, to being an LVN, to becoming a registered nurse, to finishing my Bachelor of Science in Nursing. I even managed to start my family nurse practitioner program before I had my stem cell transplant.

It was just so important to keep going. I underwent a lot of sadness, hardship, and difficulty, and all that entails. But I pressed forward in hope for sure.

There was a lot of hope that just kept me going all those years.

Jesse: I think over those six years, as Karina’s myelofibrosis care partner, it was important for me to constantly remind family, friends, and coworkers that Karina was sick. She mentioned earlier that she didn’t look sick. Of course, she was sick and on chemo — some pretty aggressive oral medicines to boot. But yes, she powered through. She was a trooper, a mom, a student, a wife who was herself so supportive of her family.

It was rough seeing her, because there were times when she wasn’t the same Karina. She was tired, and I had to accept that. And so my role for six years was to be her little battle buddy. Just to make sure that she was okay.

This was not going to be my forever.
I was determined to do whatever I had to do to get through it.

Preparing for Karina’s Transplant

Karina: I remember having a bone marrow biopsy again, locally this time. This is something that you need to do regularly as a myelofibrosis patient. When my bloodwork came in, the doctor flagged it and said that the results were bad and that I would need to be admitted immediately.

I was found to have internal bleeding. Moreover, they also determined that I had developed new mutations aside from the JAK2 mutation — mutations that could lead to me developing acute myeloid leukemia, which only a handful of myelofibrosis patients do.

That was when my doctors at MD Anderson stepped in and said, “It’s time for your stem cell transplant.” I was 39 years old, not getting any younger, but I still had a lot of fight in me. The doctor added, “We’ll still need to do this no matter what, but why wait until everything shuts down? Right now, you have what you need to get you through a transplant.”

My local doctor agreed, and so we started looking for a stem cell donor.

Our Son David Was Karina’s Stem Cell Donor

Karina: I found out the hard way how difficult it could be for a Latina like me, or for most other people from a minority group, for that matter, to be matched with a potential stem cell donor through the registry.

MD Anderson had me on a huge list, but Jesse said, “We can also advocate and go out there ourselves,” And he started orchestrating this big effort. Despite all these efforts, we still couldn’t find a donor.

MD Anderson came to us and said, “How about seeing if your son David is a match while we continue to search?” We asked David if he would be willing to undergo bloodwork to see if he could be my match. It was a no-brainer for him, and he underwent the bloodwork.

I got a phone call a little while afterwards. “We found your match. It’s David.”

I could never put into words what that phone call did for me. I had prayed so hard for this, and my prayer was answered. My donor was under my roof this whole time.

I remember telling him, “I’m so proud of you. Thank you so much. Whether this works or not, you’re my hero. I feel that you’re gifting me life.”

I did a graft of David’s cells. I’m in remission as a result.

I’m a living, breathing miracle because my son gifted me life.

I did a graft of David’s cells. I’m in remission as a result.
I’m a living, breathing miracle because my son gifted me life.

Life After Karina’s Transplant

Jesse: We’re going to grow old together, and we’re going to see our kids while we do so. We’re going to be grandparents.

We said that from the very beginning, when we went into transplant, our focus and mindset were: we’re going to get through this, we’ll be grandparents one day.

Karina: It was just tough because I always wanted to put my game face on, and it was really important for me not to worry you. I wanted to let you know: we’ve got this. I’m good.

There were many times I did feel that this was so difficult, and I didn’t know what was going to happen. And I knew that we were going to have to push through this as best we could.

Jesse: You’re my hero. I think that through all of this, I have a profound respect for everything that you’ve done through the entire cancer experience. I don’t think I’ve told you that enough. How proud I am of you and how you’ve powered through — continuing with your studies and with being a mom and with being a wife to a guy in the military who leaves all the time, and so I’m just so proud.

Karina: I would say that cancer and your experience being my myelofibrosis care partner amplified your good heart. I know you know this and that you’ve been so constant since day one. You’ve made all the promises you’ve kept. You’ve never failed me in any way. You’re God-centered. Even after all the changes I underwent due to my experience, including my appearance changing radically, you’ve been right with me.

I realized that we’re a divine orchestration that God set for us. I was so blessed and continue to be so blessed to have found this genuine love.

There were many times I did feel that this was so difficult, and I didn’t know what was going to happen. And I knew that we were going to have to push through this as best we could.

What We Want Other MPN Patients to Know

Karina: The most important thing that got me through is the power of the mindset. When we can’t control what our body is doing or what’s to come, when we’re uncertain of many things, the one thing we can control is our outlook about all of it.

And be easy on yourself. You’re going through so much. Love yourself during this time. Know how to facilitate a healthy mindset. It’s beneficial from beginning to end.

Our Advice for Other Caregivers and Care Partners

Jesse: Have a supportive mindset, but take care of yourself as well.

As a myelofibrosis care partner, or a care partner in general, you can sometimes feel that the world is on your shoulders. Seeing your significant other struggle and hurt isn’t easy. Not having all the answers is extremely difficult.

Education is one thing, but above all, have that positive mindset, and be supportive of the person that you love who is ill.

The most important thing that got me through is the power of the mindset…
… when we’re uncertain of many things, the one thing we can control is our outlook about all of it.

Special thanks again to Karyopharm Therapeutics for its support of our independent patient education content. The Patient Story retains full editorial control.

Thank you for sharing your story, Jesse and Karina!

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Self-Advocacy and Stage 4 Colon Cancer: Jay’s Story

Post author By Chris Sanchez
Post date June 10, 2025
No Comments on Self-Advocacy and Stage 4 Colon Cancer: Jay’s Story

June 10, 2025

Jay’s Path to Self-Advocacy and Healing Beyond Stage 4 Colon Cancer

Jay, an ex-athlete and father of three, was diagnosed with stage 4 colon cancer when he was 43. It all started with a symptom many might overlook: intermittent blood in his stool. But rather than dismiss it, Jay consulted his doctor. This touched off a series of medical tests. A CT scan and colonoscopy revealed a mass, marking the beginning of his life-altering experience.

Interviewed by: Nikki Murphy
Edited by: Chris Sanchez

Despite the shock, Jay embraced the process with resilience, navigating surgeries, chemotherapy, and countless medical procedures. His ordeal wasn’t just physical. The mental toll of living with stage 4 colon cancer reshaped his identity. He describes feeling like the sole survivor of a plane crash, grappling with survivor’s guilt as he watched fellow patients succumb to the disease.

This emotional weight prompted Jay to seek mental health support, helping him process not just survival but the loss and changes around him. He discovered that PTSD doesn’t only follow traumatic events like war — it can also stem from enduring a significant illness.

Throughout his treatment for stage 4 colon cancer, Jay focused on self-advocacy. He actively participated in treatment decisions and opted for advanced tests like the KRAS test to personalize his care. This approach to self-advocacy also meant embracing help from family and friends, acknowledging that support isn’t a sign of weakness but an integral part of healing. Jay noted that in his view, his wife and close family bore emotional burdens just as heavy as his own.

Physically, the long-term side effects of treatment linger. Jay describes his fatigue, altered taste sensations, and sensitivity to cold drinks— all reminders of what his body has been through. Yet, his mindset remains empowered. He stresses the importance of being active and cherishes the people who walked beside him, whether offering physical or emotional support.

Jay’s story isn’t just about surviving stage 4 colon cancer — it’s about what he did starting at his diagnosis. From the moment he received the news, Jay became a fierce advocate for his own care. He asked questions, sought out advanced testing, and made sure his voice was part of every treatment decision.

Watch Jay’s story and discover:

The importance of listening to your body
The role of self-advocacy in shaping a treatment path
The unexpected mental hurdles that can come from beating stage 4 colon cancer
Why accepting help is one of the strongest things you can do
How it might be possible to turn an unsettling diagnosis into a life of gratitude and self-awareness

Name:
- Jay W.
Age at Diagnosis:
- 43
Diagnosis:
- Colon Cancer
Staging:
- Stage 4
Symptom:
- Occasional presence of blood in stool
Treatments:
- Chemotherapy
- Surgery: installation of port and liver infusion pump, colectomy, hepatectomy, liver ablation, removal of liver infusion pump

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.

Thank you for sharing your story, Jay!

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Supporting Someone with Cancer: Karina & Jesse’s Myelofibrosis Care Partner Story

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How Our Myelofibrosis Care Partner Story Began

Karina’s Myelofibrosis Diagnosis and How We Took It

Karina’s Symptoms Progressed

How We Took Back Control After the Diagnosis

Hope Helped Us Build Up to Karina’s Stem Cell Transplant

Preparing for Karina’s Transplant

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Our Advice for Other Caregivers and Care Partners

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