Author: Chris Sanchez

The “Luckiest Unlucky Person”: Young Mom Laurel’s Kidney Cancer Experience

Post author By Chris Sanchez
Post date February 11, 2026
No Comments on The “Luckiest Unlucky Person”: Young Mom Laurel’s Kidney Cancer Experience

February 11, 2026

The “Luckiest Unlucky Person”: Young Mom Laurel’s Kidney Cancer Experience

Clear cell renal cell carcinoma (ccRCC), the most common type of kidney cancer, can sound clinical on paper. For Laurel, however, it was anything but clinical. Her experience unfolded in the middle of new motherhood, sleepless nights, and Manitoba winters as chilly as -40°C (-40°F). At 33, Laurel was enjoying maternity leave with her baby when a sudden, excruciating gallbladder pain sent her to a rural emergency room. Imaging to confirm gallstones also revealed a tumor on her left kidney, leading to a diagnosis of early-stage clear cell renal cell carcinoma and a plan for partial nephrectomy.

Interviewed by: Carly Knowlton
Edited by: Chris Sanchez

Before the diagnosis, life felt full and ordinary in the best way. Laurel describes how she finally loved being a mom after a difficult first few postpartum months, and savoring simple joys like skating, building backyard toboggan slides, and tending her white picket-fenced garden. That everyday joy made the call confirming that she had kidney cancer, which she received on her husband’s 40th birthday, all the more surreal. Her family doctor was direct about the likelihood of cancer, and a network of advocates, including an ER physician, nurse navigator, and urology team, moved quickly to get her into surgery.

Laurel underwent a laparoscopic partial nephrectomy with the understanding that she might need to have a full nephrectomy if necessary. Pathology later showed cancer cells close to one margin, but her urologic oncologist was confident that the extensive cauterization eliminated any remaining cells. While the clear cell renal cell carcinoma was addressed surgically, Laurel required emergency gallbladder removal and an endoscopic retrograde cholangiopancreatography (ERCP) to diagnose and treat issues in her bile ducts and pancreatic ducts. She ended up spending more time in the hospital for these complications than for the kidney surgery itself.

Emotionally, Laurel describes compartmentalizing to move through crisis — delegating research to her sister in clinical research, childcare to another sister, and advocacy to a cancer nurse navigator. The most painful moment came when she realized she needed to write a will and create memory albums for her young son, in case he grew up without remembering her. Over time, therapy helped her process the experience. Hearing “no evidence of disease” on an early CT scan brought profound relief and, unexpectedly, improved mental health; she now cares far less about others’ opinions and more about being present for her child and listening closely to her body.

Watch Laurel’s video and read through the edited transcript of her interview for more about her kidney cancer story.

Listening to new, severe, or persistent symptoms, like Laurel’s gallbladder attack, can sometimes reveal serious conditions such as early-stage kidney cancer and change the course of care
Delegating both the emotional and logistical load to trusted people, like family, nurse navigators, and clinicians, can make complex treatment and recovery more manageable
Taking symptoms seriously and advocating when “something doesn’t sit right” is not overreacting; it is an essential part of your health experience
Complications from treatment and other health issues, like gallstones, cholecystitis, and pancreatitis, can be more painful than kidney cancer surgery itself, and deserve equal attention and support
Laurel describes a powerful transformation: what she expected to be a long-term mental health burden instead became an experience that clarified her priorities, reduced worrying about others’ opinions, and deepened her focus on her son and her values

Name: Laurel M.
Age at Diagnosis:
- 33
Diagnosis:
- Kidney Cancer (Clear Cell Renal Cell Carcinoma)
Staging and Grade:
- Stage 1, Grade 2
Symptom:
- Gallbladder attack resulting in extreme pain in sternum
Treatment:
- Surgery: partial nephrectomy

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.

Transcript of Laurel’s Story

My name is Laurel
Hobbies, passions, and life in Manitoba
I had a gallbladder attack that revealed I had kidney cancer
Hearing there was a tumor on my kidney
Life as a new mom before diagnosis
Getting the exact kidney cancer diagnosis
My kidney cancer treatment plan and surgery options
Going in for kidney surgery
Recovering after my partial nephrectomy and gallbladder surgery
Comparing pain: Kidney surgery vs. gallbladder complications
Processing a kidney cancer diagnosis after everything happened so fast
The hardest part emotionally: Writing a will for my son
Coping with kidney cancer as a young mom
How cancer changed my outlook on life
Seeing “No Evidence of Disease” on my scan
Mental health after cancer and the role of therapy
Advocating for myself and support from my care team
Navigating motherhood while facing cancer and my son’s illness
Hearing “It’s so rare” again and again
Advice for others facing cancer or supporting a loved one
Financial preparedness and the cost of cancer and caregiving
Listening to your body and not delaying care

My name is Laurel

I’m from Manitoba, Canada. At age 33, I was diagnosed with clear cell renal cell carcinoma. It was stage one and grade two.

This occurred in December 2024. I had my partial nephrectomy in January of 2025.

Hobbies, passions, and life in Manitoba

I really love just being outdoors any chance we get.

We get all four seasons here. It goes from plus 40 Celsius sometimes in the summer on really hot days to almost minus 50 Celsius on cold days in the winter. Any chance we get the in-between weather, we are outside, whether it’s on the skating rink or building a toboggan slide in our backyard, or we are just in the front garden. We live on a little river. I literally built a white picket fence around the garden at my house and attempt to garden when I have time. Some years are easier than others, but even when it’s weedy, I still find a little bit of joy in it.

I had a gallbladder attack that revealed I had kidney cancer

I was home alone with my son, who at the time was around nine months old, and I started getting this extreme pain in my sternum. It almost felt like a heart attack, to the point where it got so bad that I was afraid that if I called 911, they would not get to me in time. It was so extreme that I could not breathe. I live five minutes from a hospital that sometimes has an ER open. I took a chance and drove my son and myself there, basically hobbled through the door with him in one arm, and they ran to me, grabbed my baby, and immediately got me in. They did an EKG to make sure it was not a heart attack.

Thankfully, the ER doctor who was there that day had also had a gallbladder attack when she was postpartum after she had a child. It can be pretty common after pregnancy, and she recognized the symptoms right away and said, “This is a gallbladder attack.” Because I live in a rural area, that hospital did not have what they needed to do the ultrasound to confirm it. I had an appointment at a different hospital that I went to for that.

When they did the ultrasound to confirm the gallbladder attack and find the gallstones, which they did, they also found a tumor on my left kidney.

Hearing there was a tumor on my kidney

I have a really good family doctor, and he shoots it to me pretty straight. I am the kind of person who appreciates that. I do not like sugarcoating things that are not sugarcoated. If it is bitter underneath, do not try to trick me with sugar on it. So he was pretty honest with me and said that most kidney tumors end up being cancerous.

The ER doctor from our rural hospital, when she got the report, even though I was technically not a patient there anymore, gave me a call and said she was referring me for an urgent CT scan. She went above and beyond as well. Then my own doctor was looped in, and that is how the process went once I found out it was a tumor. It was actually my husband’s 40th birthday, December 5th, when I got the call saying it was cancerous. After the CT confirmed it as much as a CT scan can, they did it with dye and were basically 99.9% certain it was cancer at that point.

Life as a new mom before diagnosis

Life was really good. The first three months of postpartum were really rough, but I was finally in that stage where I was loving being a mom.

I was getting some sleep, and I was on maternity leave because in Canada, you can take up to 18 months. I had planned to take about 14 months, so I was getting close to the end of my maternity leave. I was really enjoying my time with my son, spending more time with family, and just really loving life.

Getting the exact kidney cancer diagnosis

Once I received the pathology report, they told me what type of kidney cancer it was, how aggressive it was, and were able to confirm it did not enter the vein there as well, so how likely it would be to spread. The pathology report gave those details. My family doctor got it before I even had my appointment with my urologist–oncologist. He gave me that printed-out report, which was really good.

By the time I went to see the urologist, the student there came in to try to give the report and misinformed me, telling me my margins were all clear. They actually were not, which I already knew because I had the pathology report myself. I just said, “No, they are not.” Then my oncologist came in and explained that, unfortunately, there was a little bit missed that did not look like a tumor. They had cut a really good size around it, and there were still some cancer cells found in one of the margins. He said that with the amount they had to cauterize my kidney, it is highly unlikely that any cancer cells were left. The cancer cells were still contained within the margin, so they did not hit the actual outside. He was pretty confident that, despite the margins not being clear, the cancer cells were all removed.

My kidney cancer treatment plan and surgery options

The first option was a laparoscopic partial nephrectomy. Based on the imaging they had, they said once they were in there, they might need to do a full nephrectomy and open surgery.

I signed off on all that ahead of time as well — basically, do what you need to do to get it out. The plan going in was always surgery based on the information we had.

Going in for kidney surgery

It was really an out-of-body experience because this all happened so fast, thankfully. Here, urology is really backed up. Most people have to wait months to get even cancer surgery. I had a lot of people on my team who pushed it forward more. They do not often see young moms come in with kidney cancer, so I think they were really empathetic to the fact that I am not an 80-year-old man. I am a young mom with a child at home. I had a baby in their office with me, and I think that had an impact.

There were numerous people. I had a nurse advocate who called offices, took the time to explain my situation, and really pushed forward for me to have that appointment sooner. I found out about the tumor at the end of November, got the call on December 5th about it likely being cancer, and by January 3rd, it was time for my surgery.

It all happened so fast that I think I was temporarily emotionally paralyzed and was just so excited that I did not have to wait. The worst stage of cancer is the wait between when you find out and when a solution starts to take action. I was very fortunate that I did not have to linger in that phase as long as a lot of people do.

Recovering after my partial nephrectomy and gallbladder surgery

I could not lift my baby for six weeks. That was really hard. They had not taken out my gallbladder yet because they were just kind of like, “Who cares about the gallstones? We need to get rid of this cancer.” They hoped the gallstones would not cause me trouble. Three days before my partial nephrectomy, I started projectile vomiting again and having episodes from the gallstones. Because the surgery for my kidney was on my left side and the surgery for the gallstones would be on the right side, they did not have the capacity to tackle both at the same time, and at the time, they did not think they needed to. They thought I was just having an episode and hoped I would not go through it again during recovery.

By mid-January, I started having severe gallbladder attacks, which compromised my comfort during recovery. I ended up back in the hospital needing emergency surgery to have my gallbladder removed about two weeks after my partial nephrectomy. They had wanted to wait at least three months to put me under general anesthesia again, ideally. There was no option at that point. I could not eat or drink fluids at all without getting severely ill. Because of the wait to remove my gallbladder, I developed cholecystitis, inflammation around the gallbladder. The gallstones had traveled outside of it. I developed jaundice and started turning yellow. I was like a Simpson at one point.

This was even after my gallbladder was removed. I ended up being in the hospital longer for that than I did for my partial nephrectomy, because I needed an ERCP to remove the gallstones and then developed pancreatitis. That was the month of January. The first bit of my recovery looked like a fluke situation where, wow, thank goodness this gallbladder attack helped catch my cancer, but it was very painful and compromised my recovery. I had two surgeries back-to-back and then, as I said, developed jaundice and pancreatitis because of the stent they had to put in because of the gallstones. I was not fully pain-free until about May.

Comparing pain: Kidney surgery vs. gallbladder complications

It is a tough call. The gallbladder issues were more painful in the moment than the partial nephrectomy. When I gave birth, I had to be induced without an epidural, which was highly painful. I do not recommend it. The gallbladder pain was up there with that, but for days and days and days. I would say the whole jaundice, pancreatitis, gallstone situation was a lot more painful than the partial nephrectomy.

Thankfully, they managed to do the partial nephrectomy laparoscopically. It was still very sore, and I had to regain muscle mass, deal with scar tissue, and pain from the cauterization they had to do on my kidney. I developed a bit of a hematoma from that.

Overall, the complications I had from the gallstones were more painful than the partial nephrectomy, but the pain specifically from the partial nephrectomy lasted until about May before it was fully gone. That was because of the hematoma, they said, mostly because they had to cauterize so much.

Processing a kidney cancer diagnosis after everything happened so fast

I did not process it until afterwards. When going through a crisis, I turn off the emotional side of my brain and think, “I have to think logically.” Because it was so extreme, I had moments where that would slip, and in those moments, I thought I was going to have a panic attack. Then I would collect myself and say I needed to focus on problem-solving: how can I get this fixed as fast as possible, and who can I delegate to?

I like to research a lot and know my stuff, but my sister works in research as a project coordinator, so I knew I could rely on her to read the studies and advocate for me. She came to a lot of my appointments with me. I delegated tasks to her to take care of a lot of that for me. My other sister was basically my nanny and took care of my son a lot.

The hardest part emotionally: Writing a will for my son

The hardest part emotionally, before surgery, was realizing I did not have a will and that I had to write that out for my son. I still get emotional about it, because no one wants to write that when they are faced with a really serious situation. It is something I wish I had done when life was fine. It puts you in a spot where you are thinking, “What if something does happen to me, and he will have no memories of me?”

I put together an album on my computer of a bunch of photos and memories for him. I wrote him a letter and put together a general will as well, making sure I had all my affairs in order. That was hard to do after such a serious diagnosis.

Coping with kidney cancer as a young mom

I manage by knowing what is in my control and what is not, and knowing that once I have the information, I can problem-solve and do the best I can with the cards I have been dealt. I cannot choose those cards. I am not the dealer, but I can choose what I do with them and how I manage them. I always joke that I am the luckiest unlucky person ever, because of the number of times I have heard the word “rare” the last couple of years, but then something miraculous always happens. Getting in for my surgery on January 3rd, even though I was told it would be months, is an example.

I manage by believing that it is going to work out, not just by relying on miracles, but by finding solutions to help push it along, and making sure that if there are miracles going to happen, I do everything in my power to assist that.

How cancer changed my outlook on life

I definitely look at life differently now. It is one of those “Be careful what you wish for” things. I used to think it would be nice not to care so much what other people think. I want to be the best mom I can be, and to be that, I need to make sure I am putting my son before other people’s thoughts. When you get diagnosed with cancer, it has a funny way of suddenly making you really not care what other people think, and realizing that your life is yours and that it can change rapidly, even overnight.

Imagine it being your last day and making decisions based on the thoughts of others — not even their actual thoughts, but your thoughts of what other people’s thoughts are, which are not always accurate. We always have this narrative in our head, especially as women, of what other people are going to think if we pursue this or if we do that. Often, it is a narrative we have made up ourselves. Even if it is not, who cares?

Seeing “No Evidence of Disease” on my scan

I found out I had no evidence of disease when I had a CT scan earlier than planned. My family doctor ordered it because of the pancreatic stent. Because of all the gallbladder issues, I ended up having an earlier CT in May, and it came back showing there was no cancer. There was no evidence of disease.

It was such a weight off my shoulders. It was such a good feeling. It gives you more mental freedom. I know that can change. I have my one-year follow-up coming up in January, but I am not really worried about it. The strange thing is, I thought this would impact my life in such a negative way mentally, and it has kind of had the opposite effect.

Mental health after cancer and the role of therapy

I thought I would live my life in worry and be so paranoid. There are moments of that — anytime something happens, or you get sick, you get worried, or you have pains. Nowadays, people see things on the internet and worry like that anyway. If anything, the cancer has helped my mental health in the long run. Once I went to therapy and processed a lot of it and addressed how I felt about it, that was important.

Overall, the negatives have not outweighed the positives. The negatives really do not outweigh the positives of it mentally, because it has released a lot of nonsense from my mind that did not matter.

Advocating for myself and support from my care team

I did have to advocate for myself, but I also had a lot of help. There was my doctor, my sister, myself, and then the cancer care nurse advocate. I forget the exact title, but it is a program in Manitoba for people recently diagnosed with cancer. Those nurses help bridge the gap to make sure no one slips through the cracks. Their job is to advocate for you and connect you with resources for you or your family, mental health resources, information, and someone you can reach out to with questions while you wait. She really advocated for me.

Even the receptionist at the urology office played a role in advocating for me because she was the one who talked to the nurse. Everyone played a part. My oncologist–urologist also advocated for me. When I had my initial appointment with him, he said it would probably be a couple of months until he could get me in. I said okay. A couple of hours later, when I got home, an unknown number called. I picked it up, and he said, “Laurel, it is Dr. Sharon.” I said, “Oh, hi.” He said, “How does next Friday sound?” I think it was about a week and a half from my first appointment with him to when he booked me in for surgery. A couple of hours earlier, he told me it would be months, and it ended up being days.

He and the team really played a role. I can only imagine he had to manage his schedule, call up anesthesiologists, and not overpromise in my appointment. This was right after New Year’s. For all I know, maybe he even had the day off. There were strings pulled, and they suddenly got me in within a couple of days.

Navigating motherhood while facing cancer and my son’s illness

There have been some hard times. My son had recently been sick. He is such a happy little guy. He makes being a mom so easy. He is so funny, and I truly enjoy his company. He is such a character. On October 6th, he spontaneously stopped walking out of nowhere. He went from being a super-active, typical toddler boy to not walking, irritable, having all these issues, and not eating.

I took him to the hospital five separate times. They said it was some form of post-viral illness and eventually thought it was post-viral arthritis. Something did not sit right with me. It just did not make sense. I kept advocating and took him to his pediatrician, who assessed him and agreed it did not seem like post-viral arthritis. I called rheumatology, where he was referred, talked to the nurse, and said I needed an immediate reevaluation. They got us in as soon as possible and referred him to a neurologist. There is only one pediatric neurologist who does these tests between Manitoba and Saskatchewan.

As soon as she was back in Manitoba, she saw my son, did the tests that were required, and confirmed he did not have post-viral arthritis. He had Guillain-Barré syndrome. It is a post-viral illness that attacks the nervous system. That was five weeks of him being unable to walk on his own, and he has recently started walking on his own again. He is such a trooper. She said he should have been immediately hospitalized and treated with a drug that calms down the immune system, and we are very fortunate that, miraculously, he just started recovering.

I was back at work for two weeks. I had taken time off work to process everything from the cancer and make sure mentally I was able to take that on again. I was back for two weeks when this happened, and then had to go back on unpaid leave to take care of him. I have been off since around October 6th, just caring for him at home until he is better.

Hearing “It’s so rare” again and again

They said those words again: “It is so rare.” It is so rare, especially in toddlers.

I would prefer not to hear that phrase anymore.

Advice for others facing cancer or supporting a loved one

Delegate to people you trust. Delegate the mental load and the physical load. People will hopefully step up for you and offer, and when they do, accept that help. I do not know what I would do without the people who helped me, whether emotionally or by taking care of my son. I could not hold him for six weeks, and my husband had to go to work because I was not working. We were not expecting me to be off work that long. Accept the help.

Another thing is to try to live within your means in case this happens to you. When something like this happens, it is going to be a financial burden. Having savings or making sure you are living within your means and not stretching too thin, even if you seem healthy, is important. You just do not know. That can mean life insurance or other insurance that covers you if you get cancer or need time off work. Find a way to prepare financially for emergencies like this.

Financial preparedness and the cost of cancer and caregiving

It is important. I do not know what I would do if I had to go back to work sooner than I did, or even now. I had to prioritize my health and then prioritize my son’s health. It is bad luck that all of this happened within one year, during which I could not work again. It is mind-boggling.

Had we not been in a financially safe space, the stress that finances can cause — I cannot fathom how much worse this would have been.

Listening to your body and not delaying care

Some topics feel almost too sensitive because you do not want to scare people. You hear how rare it is in young people for this to happen, but then you are also hearing how often it is happening now in young people. Do not delay if you notice serious, consistent changes in your body. Not every cancer will have signs, but sometimes whatever else is going on in your body might be trying to point you in a direction.

In my case, it was not my kidney cancer that made me go to the hospital, but I listened to my body and went to the emergency. In the past, I was not always good at that. I would go to the doctor too late for things. The timing lined up so that it helped catch something else. Even if cancer does not produce symptoms, something else might, and it can help save your life if you listen to your body.

Thank you for sharing your story, Laurel!

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“What in the World Is Wrong With Your Lung?” Taylor’s Lung Carcinoid Tumor Story

Post author By Chris Sanchez
Post date February 9, 2026
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February 9, 2026

“What in the World Is Wrong With Your Lung?” Taylor’s Lung Carcinoid Tumor Story

Taylor’s lung carcinoid tumor (lung cancer) experience began at just 21 while attending college, where she was living what many would consider the dream: playing Division 1 (D1) soccer and excelling academically. But unexplained symptoms like numbness and fatigue began to disrupt her day-to-day life and athletic goals. Despite repeated tests, her lung cancer symptoms (and her parent’s advocacy) were dismissed as minor, a common challenge younger patients face.

Interviewed by: Keshia Rice
Edited by: Chris Sanchez

Persistent recurrent pneumonia ultimately led Taylor to the emergency room, where a CT scan revealed a collapsed lung and a mass. That moment marked the turning point: both her self-image and her family’s role became central as her mom tirelessly advocated for more thorough investigation, ultimately resulting in Taylor’s diagnosis of lung cancer (specifically, a carcinoid tumor, which is a kind of neuroendocrine tumor). Their search led Taylor to a world-class surgical team at the Duke Cancer Institute, where she had surgery, including a minimally invasive lobectomy.

Navigating her lung cancer treatment was physically and emotionally demanding, but it ignited Taylor’s commitment to patient self-advocacy. She found herself at the forefront of challenging lung cancer stigma, especially the misconception that only smokers get lung cancer. Taylor’s experience highlights the importance of compassion and personalized care, regardless of background or risk factors.

Taylor’s lung cancer experience is marked by active advocacy, transparency about her IVF process, and grounded family support. Her approach encourages others facing lung cancer to seek second opinions, empower themselves with information, and never underestimate the value of dedicated care partners.

Watch Taylor’s video or read the edited transcript of her interview to find out more about her story.

Early symptoms of lung cancer can be subtle and easily overlooked, especially in younger patients
Surgery and recovery for lung cancer come with profound physical and emotional challenges
Breaking lung cancer stigma creates space for compassion, regardless of patient history
Advocacy transforms patients into empowered partners within their care teams
Every patient deserves to be seen, heard, and supported: a universal truth for anyone facing a serious health diagnosis

Name: Taylor D.
Age at Diagnosis:
- 21
Diagnosis:
- Lung Cancer (Carcinoid Tumor)
Staging:
- Stage 1B
Symptoms:
- Numbness and tingling in toes
- Fatigue and shortness of breath, leading to inability to pass fitness test required to play Division 1 soccer
Treatment:
- Surgeries: video-assisted thoracoscopic surgeries (VATS): left upper lobectomy, lingula removal

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.

Transcript of Taylor’s Interview

My name is Taylor
How my diagnosis unfolded
Being diagnosed at 21
Age bias and early advocacy
Parental advocacy and second opinions
My treatment experience
How I deal with stigma
My advocacy activities
Biomarker testing and research progress
Living with uncertainty and being in remission
Motherhood, my IVF experience, and advocacy
Family and spousal support
Challenges and opportunities in healthcare
Words for my younger self
Advice for newly diagnosed patients

My name is Taylor

My name is Taylor, and I was diagnosed with lung cancer when I was 21. In 2007, I was diagnosed with what they call a [lung] carcinoid tumor, which was about four centimeters in my left upper lobe. At the time, it would have been considered stage 1B.

How my diagnosis unfolded

My entire childhood, my dream was to play Division 1 college soccer, and I was able to achieve that dream. I was offered to play at East Carolina University in Greenville, North Carolina. I arrived in my freshman year in the best shape of my life, or so I thought. I started having issues with numbness and tingling in my toes, and I was unable to pass a fitness test required by the university to play.

We ran at 5 a.m. every Tuesday until everyone passed. As the weeks went by, I was the only one who hadn’t passed, which really didn’t make sense considering how much time I spent playing. We started doing tests, nerve conduction study, MRI, chest X-ray, several other things, but nothing was really showing up as the cause of my symptoms: numbness in my toes and being fatigued and out of breath.

Eventually, I thought that maybe I was making this up, maybe nothing was really wrong. My coach gave me some grace, and I could still play, but after my freshman year, I decided maybe I was burned out. Maybe this wasn’t right for me. I quit playing soccer, which, if you know anything about Division 1 college athletes, is pretty unusual.

My parents were concerned, even worried, since I’d dedicated my entire childhood to playing soccer. I got involved in a sorority and started living the average college life. About a year later, I kept getting recurrent pneumonia, which is actually how I got diagnosed. We had another chest X-ray. At the time, they did not tell me further follow-up was needed, but when we got my medical records, we learned it was recommended.

What ultimately led to my diagnosis was ending up in the emergency room on a Saturday at 11 p.m., thinking my appendix was rupturing. They did a CT of my abdomen and pelvis. When the doctor walked in, she said, “Your stomach, abdomen, and appendix look okay. You have a cyst or two on your ovaries, but for someone your age, that’s fairly normal. But what in the world is wrong with your lung?” My sister and I were alone; my parents were on a Boy Scout trip without cell service. The doctor said, “You have a four-centimeter mass, and your left lung is almost completely collapsed. Are you having trouble breathing?” Immediately, I thought, maybe that’s why I couldn’t pass the fitness test.

That started my diagnosis. I had a bronchoscopy and all the tests to get a confirmed diagnosis, but that’s how it happened.

Being diagnosed at 21

It was shocking. You think you’re invincible as a college kid — you’re healthy, you’re having fun, cancer shouldn’t hit you at 21.

For me, there is a family history of lung cancer. I’ve lost my grandmother, great-grandfather, and great-uncle to lung cancer. I wasn’t terribly surprised, given my family history.

As a 21-year-old, never-smoking, former Division One college athlete, I didn’t fit the typical profile of someone who gets lung cancer.

Age bias and early advocacy

I mentioned the chest X-ray done at Student Health. My mom had tried to advocate for me two hours away — she knew I kept getting sick and that we had a family history. She asked the doctor to do a CT scan and explained the symptoms and history, but the provider told my mom she was being dramatic and that 21-year-olds, especially Division 1 athletes, don’t get lung cancer. Eventually, he did a chest X-ray, told me everything was fine, gave me a Z-Pak, and sent me on my way.

Later, when my mom got my records after I was diagnosed, we learned the radiologist had recommended follow-up from that chest X-ray, but no one had told me. That could have been an opportunity for quicker diagnosis, and for many people, it could have affected their prognosis.

Parental advocacy and second opinions

Although my later diagnosis did not change my particular prognosis, with my kind of lung cancer being slow-growing, for many, a delayed diagnosis can change everything.

My parents were instrumental in getting a second opinion for me. After my confirmed diagnosis, I was seen in Wilmington, North Carolina, where no fellowship-trained cardiothoracic surgeon was available; just a general surgeon willing to remove my lung with a large incision.

Thankfully, my parents researched the best place for me, and I ended up at an NCI-designated cancer center at Duke, where I was treated by one of the world’s leading thoracic surgeons. Their advocacy was critical for my outcome.

My treatment experience

Compared to many, I had it easier.

In 2007, there weren’t systemic options for carcinoids; surgery was the only treatment. I had a left upper lobectomy and lingula removal via minimally invasive video-assisted thoracoscopic surgery (VATS). It’s a small keyhole incision on my left side between ribs, plus a 2-3 inch incision under my left breast to pull the lung out.

The recovery was difficult, both physically and emotionally. I wasn’t prepared for the pain, and healing from that was the most challenging part. After surgery, they told me, “Hopefully, we’ll get clean margins, and you’ll be scanned every three months, then less often if there’s no evidence of disease.”

I did have clean margins, so my staging was T2N0M0: no nodes positive, no metastatic disease. I didn’t need chemo or radiation. If I’d had progression or my nodes were positive, I’m not sure systemic therapy would have helped anyway. I’m definitely one of the lucky ones, especially considering my tumor’s size.

How I deal with stigma

Initially, I’d just say, “No, I wasn’t a smoker” when people asked. At 21, even if I had smoked, I would’ve had to start at two years old. It’s an unreasonable question. It doesn’t matter if you’re a smoker or not; no one, despite their lifestyle, deserves cancer. Clinically, I understand the physician’s perspective, but otherwise it’s irrelevant. I’ve worked to change the stigma — being public about my diagnosis — because the stereotype that only smokers get lung cancer is so harmful.

We don’t blame people who are obese and get breast cancer, or people who drink and get liver cancer. Why blame smokers? Many started before it was even known to be harmful; cigarettes were given out free to military personnel. Regardless of whether they smoked, people deserve compassion. Now, if someone asks, “Did you smoke?” I reply, “Does that make you care less?” Honestly, it’s irrelevant and quite rude.

My advocacy activities

I’ve been fortunate to speak publicly, especially early on after my diagnosis. My physician first suggested advocacy at my three-month follow-up after surgery, when I was emotionally low. He said, “We need your voice. Do you know the facts about lung cancer?” He explained it’s the number one cancer killer of men and women, more deadly than breast, prostate, and colon cancers combined, yet it’s the least funded major cancer.

He also stressed that only 15% of lung cancer patients survive. He invited me to speak at a conference, sharing my story, and that was my advocacy start. I’ve worked with the North Carolina Lung Cancer Alliance, Bonnie J Foundation (now the GO2 Foundation), Lungevity, and other groups, as well as industry partners. Projects like Your Cancer Game Plan help patients create action plans. I also help educate medical device sales forces about the need for quick, early diagnosis. I now work in the industry, which feels full circle.

Biomarker testing and research progress

In 2007, there were no known biomarkers for lung cancer; Tarceva for EGFR mutations came a year or two later.

At that time, it was “get your chemo, get your radiation, and pray.”

We’ve come a long way in 18 years, and I wish I’d known whether I had mutations, but it wasn’t available then.

Living with uncertainty and being in remission

Early on, I struggled with anxiety. I was scanned every three months, then every six months, then yearly after three years. A year felt like a long time. I have two small ground glass nodules in my lung from before the resection, and they’re always on my mind. My surgeon is confident they’re not cancerous, but the uncertainty is always there. I was scanned until year 13.

Now, my physician, PA, and I have decided the risk of more CT scans outweighs the benefits of continued monitoring. Some might say I’m “cured,” but I prefer “healed.” Whatever happens, I’ll be okay. My faith sustains me.

Recently, I had pain in my upper right abdomen. An ultrasound showed my liver was enlarged, possibly due to recent Tylenol use. They wanted to do a CT of my abdomen and pelvis; I insisted they also scan my chest to check my lungs, and after explaining my history, they agreed.

Such conversations remind me: you never stop living with the diagnosis, even 18 years later.

Motherhood, my IVF experience, and advocacy

My diagnosis turned me into a lifelong healthcare advocate. Some doctors probably groan when they see me; I’m persistent. I’m open about my IVF journey since speaking out helps other women. I wasn’t having trouble getting pregnant, but staying pregnant. I had two miscarriages and two D&Cs. After the second, I insisted on blood work and a semen analysis for my husband before trying again. The physician reluctantly agreed, and test results changed everything: my AMH was very low, indicating diminished ovarian reserve. We moved straight to IVF, since levels can drop quickly, and I didn’t want an only child if possible.

Advocacy made my family possible. If I’d tried a third time on my own, another miscarriage or a long pregnancy could have dropped my AMH further and made a second child impossible.

Family and spousal support

My husband, Robert, is amazing. Social media was barely a thing in 2007, so our story isn’t documented online. We met two weeks before my diagnosis, after a flag football game where I dislocated my finger; he was the opposing team’s coach. He came to check on me, then messaged me on Facebook.

His commitment is genuine love. If I’d met someone and learned two weeks later they had lung cancer, I might have walked away. He didn’t; he dived in headfirst. The first time he met my parents was at Duke Hospital, while I was in the ICU, still in his practice clothes as a high school basketball coach. He stayed overnight so my parents could rest. He’s always been supportive, especially as my advocacy work and travel increased after having children.

Challenges and opportunities in healthcare

We have come a long way, but there is still more to do. Lung cancer screening now exists — when I was diagnosed, it didn’t — but patients who qualify must get screened. This requires awareness from patients and encouragement from clinicians. Providers should recommend lung cancer screening with the same urgency as mammograms or colonoscopies.

I’d love to see everyone get screening, not just those meeting strict criteria. Targetable mutations now allow specific therapies for many patients. Data shows that if you get the right therapy for your cancer, outcomes improve. Yet it’s shocking how many patients aren’t offered biomarker testing upfront. In my view, that should be malpractice.

Not all cancer centers are NCI-designated, but good care exists at community oncologists nationwide. Get care locally, obtain a second opinion from a major center when possible, or even virtually. Advocate for yourself. The system is complex, options are numerous, and it’s easy to fall through the cracks.

Words for my younger self

If I could go back and speak to my 21-year-old self, I’d tell her to buckle up. Whatever hand you’re dealt, you can do it.

My mom always said to bloom where you’re planted and leave things better than you found them. That’s been my outlook.

I try to make a difference for others, so anyone dealt the hand I was dealt gets a shot at a better outcome.

Advice for newly diagnosed patients

I spend a lot of time talking to patients, whether through friends or direct outreach. The first thing I tell everyone is to get a second opinion and ensure they’ve had biomarker testing. Make sure you’ve seen an interventional pulmonologist for proper staging and diagnosis, and that treatment aligns with NCCN guidelines.

Prepare for surgery. I talk about the pain and what patients can do to survive it. If you’re getting a lung resection, get a recliner at home.

There are so many tips and tricks you only learn by experience, so I try to be a cheerleader and champion so patients have the best experience possible.

Thank you for sharing your story, Taylor!

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Jennifer P., Neuroendocrine Tumor, Stage 4, High-Grade

Symptom: Pain in upper back
Treatments: Chemotherapy, immunotherapy
...

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Living With Incurable Stage 4 ALK+ Lung Cancer: How Stephanie Redefines Hope

Post author By Chris Sanchez
Post date February 6, 2026
No Comments on Living With Incurable Stage 4 ALK+ Lung Cancer: How Stephanie Redefines Hope

February 6, 2026

Living With Incurable (Not Terminal) Stage 4 ALK+ Lung Cancer: How Stephanie Redefines Hope

When Stephanie was diagnosed with stage 4 ALK-positive lung cancer at 44, she was a busy mom of two teenage daughters, working full time and spending weekends skiing, traveling, and cheering from the sidelines at club sports. The first signs that something was wrong showed up as a stubborn cough after COVID and repeated “pneumonia” diagnoses. Even as she cycled through antibiotics and inhalers, she kept pushing through work and parenting — until she had a coughing spell violent enough to break a rib, which finally sent her to the emergency room.

Interviewed by: Keshia Rice
Edited by: Chris Sanchez

In the hospital, imaging revealed tumors in multiple parts of her body, and a biopsy confirmed non-small cell lung cancer that had already spread, making the diagnosis stage 4. Stephanie, a lifelong nonsmoker living outside a city, had never imagined that lung cancer could be possible for her. Like many, she had absorbed the stigma that lung cancer is an “old person’s” or “smoker’s” disease. Learning that her cancer was driven by an ALK mutation completely shifted that narrative and opened the door to targeted therapy and a very different kind of long-term experience with cancer.

While waiting on genomic testing, Stephanie started chemotherapy. She received the call confirming ALK-positive lung cancer while she was literally in the infusion chair and with an IV already in her arm. Her doctor explained that, in the world of lung cancer, being ALK-positive was considered “good news” because there were effective targeted therapies and active clinical trials. Stephanie chose to enroll in a clinical trial designed to match standard-of-care results with fewer side effects and better protection against brain metastases. She describes that decision as both an act of “paying it forward” and a way to potentially spare herself from harsher side effects.

At home, Stephanie and her husband faced the emotional logistics of sharing the news with their daughters. They first mentioned only that she had lung cancer, intentionally holding off on the stage 4 details until scans began to show real treatment response. Months later, after multiple scans showed shrinking tumors, they sat each daughter down individually to talk about what “incurable but not terminal” would mean for their family.

Today, one year into treatment, Stephanie describes her cancer as a chronic, managed disease, and herself as an advocate who now centers her time and energy on what matters most: her health, her family, and helping other people living with stage 4 ALK-positive lung cancer feel less alone.

Watch Stephanie’s video and browse the edited transcript of her interview to learn more.

Persistent or changing symptoms like a chronic cough or unexplained pain deserve follow-up and imaging, even when they are initially labeled as “just pneumonia” or a lingering infection
Lung cancer can affect younger, active nonsmokers; anyone with lungs can develop lung cancer, which is why genomic testing for mutations such as ALK is so important
Clinical trials and targeted therapies for ALK-positive lung cancer can offer effective treatment options, sometimes with fewer side effects and additional benefits, like better protection against brain metastases
Asking for help from loved ones, care teams, and communities is not a sign of weakness; it is a powerful form of self-advocacy that can make the experience more manageable for both patients and families
Stephanie’s transformation includes shifting from a fiercely independent, always-last-on-the-list mom to someone who prioritizes her physical, emotional, and mental health and channels her experience into advocacy and education

Name: Stephanie K.
Age at Diagnosis:
- 37
Diagnosis:
- Non-Small Cell Lung Cancer (NSCLC)
Staging:
- Stage 4
Mutation:
- ALK
Symptoms:
- Persistent, intense cough
- General feeling of sluggishness
Treatments:
- Chemotherapy
- Targeted therapy through a clinical trial
- 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.

Transcript of Stephanie’s Interview

I'm Stephanie
My early symptoms: coughing and feeling sluggish
I was a young nonsmoker: how risk factors were missed
I confronted lung cancer stigma as a nonsmoker
Hearing “Stage 4” at 44, and redefining terminal vs. incurable
Learning about ALK-positive lung cancer and targeted therapy
I found hope in the ALK-positive lung cancer community
Telling our teen daughters about lung cancer and the ALK mutation
Why I chose an ALK-positive lung cancer clinical trial
Hip radiation, pain, and learning to advocate for my body
Losing independence: oxygen tanks, mobility issues, and asking for help
How lung cancer changed my marriage
Mom guilt, teen sports, and white ribbons
One year after my stage 4 ALK-positive diagnosis: reflection and advocacy

I’m Stephanie

I’m from Massachusetts, and I was diagnosed with stage four ALK-positive non-small cell lung cancer in December of 2024.

My life before cancer was a life full of hope and fun. I have two teenage daughters, and I’m married to my high school sweetheart, and we have been doing all kinds of great things. We go skiing. We travel. We both work full-time, while the girls are in high school and doing their thing. Right before diagnosis, I was very sick, and we thought I had pneumonia. So the right before diagnosis was a lot of coughing and a lot of inhalers and things like that. But the before life was one of more travel, adventure, activity, things like that.

My early symptoms: coughing and feeling sluggish

As a mom, we put ourselves last. So when I was sick, I just thought it was a quick cold. I had just gotten over COVID, actually, and then I had a couple of great weeks, and then I started coughing again. So I thought it was just a little residual congestion from having COVID, and it just escalated, and the cough just wouldn’t go away. I didn’t really have other cold symptoms. I had just a terrible, hacking cough. It wouldn’t be resolved with any over-the-counter medication. Using cough drops didn’t help. I used an inhaler, like a steam inhaler, at night for some kind of relief, but nothing was doing the trick.

So I did brush it off for a while and figured, “I’ll just deal with this later because I’m working full-time.” It was a busy time for me at work, and eventually I hit up the urgent care and figured that’s good enough. We’ll just get some kind of antibiotic and move along my way. After a few more weeks with antibiotics, nothing changed. It got worse. I went through more antibiotics and had a chest X-ray. The second time, they said it was pneumonia again, and we had new antibiotics. But again, I was still going to work every day, just going through the cycle of trying to pull yourself together and get everything you need to do done.

It wasn’t until maybe eight weeks later, from my first visit to an urgent care, that I was coughing so hard that I actually broke a rib. I felt it snap as I coughed, and when that happened, the pain was actually what finally sent me to the hospital instead of an urgent care. The pain of that coughing was intense. I wasn’t going to the hospital with the concern of the cough. I was going because I needed pain medication that was stronger than ibuprofen.

When I got there, they took a look at me and were like, “Did you have imaging done recently? Because we think it’s important that we do that again.” The ER doctor came in fairly quickly and decided he was going to admit me, which I thought was strange because, again, I still just thought I had a cold. I had pneumonia. I figured he was just admitting me because of the pain from the broken rib. It was actually a couple of days before I realized he was admitting me for more than pneumonia. I think they danced delicately around what they were testing me for at first, maybe to not scare me.

On my second day in the hospital, when they told me I’d be getting a biopsy the next day, I was like, “Why would I need a biopsy for pneumonia? This is silly.” That was the reality for me of just how I pushed it aside for a long time. I mean, not very long — eight weeks maybe — that I was kind of just pushing it aside as a cold, and then it became real very suddenly for me.

I was a young nonsmoker: how risk factors were missed

Absolutely, my age played a role, especially not having a history of smoking. That really was part of the lack, I think, of pushing quicker to get the diagnosis because I didn’t have your typical risk factors. I live in a pretty wooded area. I’m not in a city, so they weren’t thinking about air pollution. I don’t use a wood-burning or coal-burning stove in my house, so they weren’t thinking about it like that. I don’t smoke, and I was, again, 44 years old and fairly healthy. So we didn’t go there very quickly.

What they saw in my lungs on the X-rays at urgent care looked like pneumonia to them. Without those other risk factors, they really didn’t say, “Well, it could be something else, so we should test just to make sure.” They said, “Hey, it’s the season. It’s September, October, November. People get sick. A lot of pneumonia is going around right now. You’re young, you’re healthy. It’s just that. Let’s treat it.”

I wasn’t diagnosied until that hospitalization. But also very randomly in November, I had a couple of blood clots in my leg. Having the DVT in my leg finally made my PCP say, “Something doesn’t sound right here,” because that shouldn’t be happening. You don’t have any other reasons for that either. She referred me to a pulmonologist and a hematologist, whom I wouldn’t be able to see until February or March because they were booked so far out. Since I didn’t have your typical risk factors, they didn’t see it as urgent.

For me, it was like, “Well, if you think something’s going on and there are some other puzzle pieces, I’m concerned.” I actually did start making calls to see if there was anybody I could meet with earlier. It was probably a two-week span between when she sent me a referral for hematology and when I actually went into the hospital and found out it was, in fact, lung cancer. I certainly wasn’t thinking lung cancer, though. I was more concerned with, like, why do you want me to see a hematologist? For whatever reason, I wanted to get there faster because, whatever you think this might be, I want to tackle it and get a solution in place quickly.

I confronted lung cancer stigma as a nonsmoker

When you tell people you have lung cancer, the first question is, “Do you smoke?” I knew nothing of lung cancer before having it myself. I didn’t have any experience with anybody who’d had it before. I also believed in the stigma of, “It’s a smoker’s or old person’s cancer. It’s not something that you can just get out of the blue.”

I’d never heard of a genomic test for any sort of cancer other than breast cancer and the BRCA gene. That’s the only time I’d ever heard of some kind of cancer test you could get to find out if you have the gene.

When I was first diagnosed in the hospital, I had tumors on each of my ovaries, lesions in my spine, on my liver, and in my lungs. All I knew, though, was my ovaries, because I had a little sensitivity on my side. When they pushed on my stomach, I’d say, “Yeah, it hurts.” When they said I needed to do a biopsy, it was like, “Oh, it’s got to be something on my ovary.“

They came back and said, “It’s cancer.” They just said, “It’s cancer.” I obviously was upset. But then my nurse was like, “Yeah, but if it’s ovarian cancer, that’s a quick and easy thing that we’ll just take out. You don’t want to have children anymore, so we can remove all of the parts that could be affected right now. I promise you, you’re going to be in great hands.” So I had this really different hope that it was just a tumor situation. We’d just remove it; we’re going to be fine.

The following day, I was told that it was actually lung cancer and that they had biopsied my liver. The liver is what showed the lung cancer on the slides. Because I didn’t have the classic risk factors, the concern was that it was probably a genomic defect, a mutation. As we were starting to figure out what this was, the doctor mentioned that there could be these genetic tests that we needed to do, and we needed to button up whether it was just straight-up non-small cell lung cancer or if there was an actual mutation that we were up against, because you treat them differently. I also didn’t know that. In my head, you have cancer, you get chemo. That’s as far as I’d been aware of it.

I was the first person in my family — my parents, my aunts, my uncles, my grandparents — to get cancer. It’s been a very healthy bloodline to date, and I was just shocked at what we’ve learned. I would say that what I learned about, “Every person with lungs can get lung cancer,” was only once I was one of those people, one of those lungs with lung cancer. That’s when I learned it really can be anyone with any risk factor. All you have to do is be breathing, basically, and you have that risk factor.

Hearing “Stage 4” at 44, and redefining terminal vs. incurable

Hearing “stage 4” was terrifying. It was shocking. I think shock was probably the first thing, because I didn’t even know I was that sick. I knew I was sick with a cold. I knew I was sick with pneumonia. But to think you’re going to tell me I have cancer and it’s stage four already — how in the world did I not know? In my mind, you must have cancer for a really long time for it to get to be at stage 4. Unchecked cancer for a really long time, for it to grow.

It was probably a matter of months, to be honest, because I was well in the summertime. To think about the fact that I started coughing in the fall and was diagnosed in early December — that was only a matter of months. It was a horrible shock at 44. When you’re not exposed to cancer with other people you know and your family members, you hear the word “stage 4,” and you immediately go to the word “terminal.” At 44, that’s a really scary thought because you just immediately think, “How long do I have? I am halfway through this existence that I thought I had. How are you telling me I’ve got a limited number of, I don’t know, months? Weeks? What are you even going to tell me?“

The best thing that my doctors did was they never gave me a date. They never said, “You have an expiration date.” When we got to the point of understanding the mutation that I do have, because I’m ALK-positive, there are so many advancements and treatments that I can have, that people are living longer and longer at the stage four level. We’ve changed our language here at my house. We do not use the term “terminal” at all. We say “incurable cancer.”

Even if I get to a point where there is no evidence of disease, I will always have this gene that’s just kind of waiting in the wings to come back out and scare me again. I recognize that I will be on medication for the rest of my life, making it more like a chronic illness. I need to keep that gene at bay. Keeping it under control, making sure it doesn’t come back and come up bigger by taking these medications, makes this something for me that I will never beat. It’s always in my system. I will never beat this cancer. That’s why it’s incurable, but not terminal. Because it’s not a timeline for me. It’s not a deadline. It’s not saying you only have so long to go. It’s just saying we’re going to work really hard to keep you as healthy as possible for as long as possible. It’s incurable, but we can manage this.

Learning about ALK-positive lung cancer and targeted therapy

Because of the timing of when I was diagnosed and how fast it had already gone to so many areas of my body, the doctors felt it would be best to have one round of chemo while I was waiting for the genetic test to come back, because it’s not always guaranteed how fast it’s going to come back for each patient. It was just coming up to Christmas time, so there was also something about not being sure of where that test would end up on a lab bench somewhere, how fast it would get there. We scheduled my first round of chemotherapy for December 23rd last year.

As I was sitting in that chair with my husband across from me, the phone rang, and I ignored it because it was some weird number from Pennsylvania. Then it rang again, and my husband was like, “That’s weird. Come on, why don’t you just pick it up? It’s probably not a telemarketer.” So he picked it up, and it was the doctor who originally diagnosed me at the hospital nearest my house, because we had gone to a cancer center at this point.

The doctor called and said, “I wanted to be the one to tell you your genetic test came back. Have you started your chemo yet?” I was literally in the chair, and the nurse had the medicine right here, ready to go — are we doing this or not? He said, “It’s an ALK mutation, which, in this general area of conversation, is the best possible news I could give you, because there’s so much treatment out there and so much research, and you’re going to be okay in the sense of, you’re not going to need to stay with chemo, which can be very hard on your body. We’re going to be on targeted therapy.”

He told me to go ahead and get that first round of chemo because they wanted to knock it down as much and as fast as they could. “Let’s do one round of chemo today, and then we’re going to see you back in the office in a week after you start to feel a little bit better post-chemo.” The way they explained it to me gave me a lot of hope, and it gave my husband a lot of hope to start to really dig in.

The IV was in my arm. I’m getting the chemo. We’re both on our phones immediately Googling, “What in the world is ALK-positive cancer?” Not knowing anything about this, we were learning about cancer itself, the word “metastasized,” understanding what that even means, what stage 4 means, what ALK-positive means, and what the different types of treatments are. I was getting chemotherapy at that moment and wondering, “What’s the prognosis for the future?” Nobody was telling me, “You have this many years,” or “You have this many months.” Neither of us was ready to Google that. That’s a scary thing to ask, and neither of us wanted to get that answer because you just don’t know what you’re going to see.

I found hope in the ALK-positive lung cancer community

We started to learn there was a great big community out there of ALK-positive patients, and they are so kind. They talk to each other about what’s going on. Sometimes the questions are, “I’m having a hard time with something — has anybody else experienced this?” But a lot of the time, it’s super positive. A lot of people are saying, “Hey, I just hit my anniversary. It’s been this many years since I’ve been diagnosed,” which was incredibly hopeful for me — to think that I could receive a stage 4 diagnosis, and here are people who are years into their stage 4 diagnosis.

It helped us really reframe how we think about it, to think about it as the “incurable” phrasing, because we’re seeing so many other people who are successful in their treatment. Unfortunately, there are a lot of people who are not as successful, and that’s super hard to see. But the majority of what I’m seeing, at least through these communities that I’m a part of now, is just people wanting to help each other, people celebrating the lives that have been through it before, and the treatments that are on the horizon.

There’s a lot of very promising activity in the space of ALK-positive lung cancer.

Telling our teen daughters about lung cancer and the ALK mutation

The poor kids. I was in the hospital for a week, so they knew I was sick, but they also knew I had pneumonia. So they thought I was dealing with pneumonia this whole time. It was a Friday that I was discharged. They both had some activities that they had to go to on Saturday that were, believe it or not, fundraising events for childhood cancer at their school that they were helping to run.

I certainly was not telling them before that. We just told them, “Mom’s better. She’s going to be okay. We’re out of the hospital. We have a plan. We’ll talk about this more later. Go have fun at your event, and we’ll talk.” We sat them down the next morning and said, “The reason I was out and what we found was that I do have cancer.” We did not tell them staging. We told them only that it was lung cancer. We didn’t tell them that it had spread anywhere. We told them just enough, I think, to make them feel included in the conversation but not to overwhelm them, because my husband and I didn’t have answers yet either.

When we told them, it was before actually meeting with my now treatment team, my oncology team. We had met with the emergency room oncology team. We didn’t have a plan. We knew we were going to get chemotherapy in a couple of weeks. That was about all we knew. So we told them just enough to let them know, because they were 13 and 15 at the time. We said, “Mom has cancer. It is lung cancer.” They were as baffled as we were. We had to explain that there are different ways people can get lung cancer, and we’re going to learn all about it together, and we’re going to figure out what it means for us as a family.

The next couple of weeks, it was a lot of cuddling, a lot of movie watching. I was sent home with an oxygen tank, so the poor kids had to see me with this thing strapped to me all the time. It was scary for them. Absolutely scary. My older daughter is very interested in becoming a nurse, so she was already tracking to be in the healthcare field prior to me being sick. She was in an anatomy and physiology class as well as a biology class that year. I didn’t want to overshare because I didn’t know quite how much she might actually understand and look up on her own, and panic, to be totally honest. So telling them just “lung cancer” without staging was very intentional.

We let them get through the school year. We also let them get through a few rounds of me getting scans, and each time I got scans, it was better and better and better. We decided to wait until the school year ended in June. I had been six months into treatment at that point. We’d all celebrated a couple of rounds where I’d had a reduction in my tumor mass. We sat them each down individually to talk about what it really was, which was the hard part. This was telling them it had actually been in all these different areas and was considered stage four.

We gave them the spiel about “incurable versus terminal.” We told my older daughter first, and she said, “I kind of knew.” She knew it was ALK-positive lung cancer and had started to do her own research, which I knew she would. She started to do a project in her anatomy class around ALK lung cancer, so she was learning a lot about it. What she learned is that one of the first things you see, and I didn’t realize this when we told them it was ALK, is that a majority of patients find out late stage that it’s ALK, because most of those patients don’t have risk factors. They are surprised by their diagnosis because of this mutation. So she sort of knew what was going on but kept it to herself for a while, and she was very strong about it throughout the year.

When we told my younger daughter, she’s a very different person. She’s the artsy, English-major type versus the sciencey type. She said, “Okay, okay, I hear you, and I am just going to believe that it’s going to be okay because I’ve seen you over the last six months, and you went from having a gray face and being on oxygen and looking sick all the time to being who you are today, which is you seem like yourself again. You seem normal. You do what you normally do. We go on our little adventures again, and everything is going to be fine.” So she basically moved on. My older daughter was like, “Okay, I’m going to think more about this and do research, and I’m going to really understand it.”

Since then, they’ve both become part of my little advocacy group because I have advocated for people to understand ALK-positive lung cancer better and to help with funding, because it’s a very unique cancer. We need to make sure that as patients, we’re part of the community that’s driving the research.

So, about testing them. Luckily, this is one of those things where it’s a gene that in me just broke. It just broke on its own and decided to become cancerous. So it’s nothing that they can inherit, nothing that they have a risk factor for — other than being a person with lungs. Thankfully, that’s what we’ve been learning more about and understanding, that it’s very different from the BRCA gene with breast cancer. Anybody can, unfortunately, just have this kind of genomic mutation where it’s not hereditary, but it’s just something in your body that goes awry.

Why I chose an ALK-positive lung cancer clinical trial

When I met with my oncology team the first time, it was overwhelming because there was so much I still didn’t really understand. I didn’t understand what my options were. I didn’t understand what ALK-positive was. I just didn’t know how to feel about it. To go in there and be presented with options, I thought, was really unique. I didn’t realize that would even be the way this conversation would go. I thought it would just be, “Let’s pick your chemotherapy regimen, and we’ll move along.”

When they presented me with the different trial versus standard-of-care options, I think my personality is that I want to pay it forward. I’m a person who wants to be a part of what makes things better for more people, coming up with this. Receiving this diagnosis is not fun, but if I can be part of a medication that makes it better for people, because it has really great effects on the cancer but has fewer side effects than some of its predecessors, I want to be part of that movement. That was part of why I decided to be in the trial.

The other part was very black and white. Part of it is that the drug that’s on market now does A, B, and C, but you’re going to have X, Y, and Z as side effects, and that’s not going to be fun. The clinical trial drug is the same drug that does A, B, and C, but it may have X, and that’s about it. You’re not quite sure; it may have none of those side effects. It felt to me like an obvious choice, almost like, why wouldn’t I take the drug that’s the same as the one on the market, but maybe has fewer problems?

They told me it is just as good as what’s on the market right now. It is not a placebo. It’s not half as effective or anything like that. It is just as good as what’s on the market today, but hopefully better because you won’t have the side effects. So, between wanting to do the right thing to help others coming after me and, selfishly, not wanting the side effects, I thought, let’s go for it. It also came with a third thing: it was hopefully going to block the ability for this cancer to reach into my brain. ALK-positive cancer very frequently travels up into the brain.

This new trial drug helps to block that, or that’s what they hope to find at the end of the trial — that it really does a good job of blocking that brain barrier. That’s what I fear every time I have scans: “Oh God, please tell me it didn’t go all the way up to my brain.” That being one of their selling points, in a sense, was worth being on the clinical trial.

One of the benefits of being on a trial is that my care team felt a lot bigger. There were clinical trial nurses also keeping track of everything I was doing, as well as my standard oncology team. I had more frequent check-ins and scans because of it, and I felt really well cared for in my first year of treatment. Being on that trial meant that I had a dedicated person, on top of my care team, that I could talk to about the drug itself, to say, “Hey, this thing came up. Do you think that’s a side effect worth reporting, or is that just normal stuff?” For me, it felt like a no-brainer.

Hip radiation, pain, and learning to advocate for my body

One of the lesions I have is at the top of my femur, called the femoral head. It’s right in the socket where you walk. That lesion was really bothering me a lot. It could never get rest because it was always being rubbed. I had been complaining of hip pain for a long time, not realizing it was because there was a lesion there. That was one of those things that was in my initial diagnosis, and I just never read that full-length report. I don’t think, at the time, I could have even digested it if I wanted to.

Having hip pain that wasn’t really being helped by any medication, I started to ask more questions about what else could be done, because it was getting to the point where it was unbearable. The doctor mentioned that radiation might help. It might; it may not. It might not work, and it might work. Hopefully, it would zap that one lesion, and it would die or shrink, and maybe it would be easier as I walked.

I found the radiation process to be less scary than I imagined. I think I was more scared going into it because I don’t understand radiation. Then it was super easy. I went for five days in a row. Luckily, the center is very close to my house, so it was about a 20-minute ride back and forth. I’d go, and I’d have the same care team every day, the same people to say hello to. They played nice music while I was in there. The lights were dimmed a little bit. It felt comfortable. They made it feel very casual, which was really helpful if you’re going somewhere every day to get this done.

The first time was maybe 20 minutes or so, and it was the longest appointment. The rest were maybe 10 minutes after that. At the end, it was a wait-and-see to see if it worked or not, because it also causes inflammation which can itself cause more pain in that area. It was unclear for about eight weeks if it had actually worked or not. Right after having radiation, I had a spike in pain, which was not typical. I was walking with a cane and called the radiation oncologist to ask if this was normal. I knew there was going to be some pain, but this felt like more than “some pain.” This felt scary, like too much.

Thankfully, she saw me right away, took an X-ray, and looked at everything. They wanted to make sure nothing was fractured, because radiation can also cause some bone brittleness. They confirmed nothing was fractured, so we were just doing the wait-and-see game again to see if maybe that was just more inflammation coming through. For me, I stopped using my leg as much because I was so nervous that maybe it was fractured, and that if I was on it a lot, I was going to suddenly break something, like osteoporosis. I was afraid it was going to just break out from under me.

What I ended up doing was a disservice to myself, because all the muscles and ligaments around it got super tight. My physical therapist mentioned it was like leather: it gets harder, like leather, and it doesn’t move as freely. I caused myself to have less mobility because I was so afraid of hurting myself more. Now I’m at a point where I’m done with my cane. I don’t have the pain as frequently, but it didn’t resolve what I was hoping it was going to resolve when I initially went for radiation.

It’s a very individual thing for every patient, how your body reacts and what it does for you. For me, it was trial and error, and I kind of wish I hadn’t done it. I don’t know if it’s the type of thing where I learned a bit about my body, too. After the fact, I asked for a physical therapy script so I could get moving again, get loose again, and that has helped me a lot. The biggest thing for me is learning how to advocate, because I advocated to do the radiation, but then I also advocated to get physical therapy to loosen myself back up.

Losing independence: oxygen tanks, mobility issues, and asking for help

That loss of independence is tough. It’s really tough to understand that at 44, I was incredibly independent. I was the type of person who, if you went to the grocery store, I’d bring every grocery bag in one haul because I don’t want to go back out and do that. Or if I decide I’m going to move the furniture, I’m just going to do it myself. I don’t want anybody’s help. I was fiercely independent before this diagnosis.

The way it sidelined me was dramatic. I was literally tethered to an oxygen tank for probably four weeks after my discharge. Talk about the opposite of independence. I was dependent on this machine following me around. I was dependent on anybody helping me carry the stupid thing if we went out and about somewhere, because it got heavy and was arduous to have with me. I wasn’t able to drive at the beginning because everybody around me was nervous that something was going to happen, and I wasn’t able to drive myself because of that.

Every time I wanted to go anywhere, it was a huge project because somebody would have to drive me. They were kind to do it, but I didn’t like being dependent on somebody else. I want to be able to just go when I want to go. I had a lot of help. I had a lot of wonderful friends and my family who helped me with everything. If there was an appointment, there were a lot of appointments in the beginning.

My oncologist said at the very beginning that this treatment, especially because it’s a clinical trial, is like a sprint. You’re just going from thing to thing to thing, and over two weeks, you’re going to be in appointments constantly. Then once that’s all done, you turn into marathon mode. You can get into a cadence, and your appointments will normalize. In the beginning, there were so many appointments. My husband also works full-time, so he was trying to juggle his job. I was out on leave from work, focused on my health.

My parents were really kind. They drove me to appointments just to keep me company and to make sure I wasn’t struggling if I needed help with something. It was nice just to have company. It’s nice to be there with somebody who you can talk to or don’t have to talk to, but they’re there, so you feel that comfort.

It was also hard because my daughters play club sports in the winter, and that’s my thing. I enjoy going to these club sports. It’s not a tax on me. I enjoy going. That would make us drive all over tarnation, going to tournaments. We’d be driving two hours away. I couldn’t do that anymore. It was disappointing to have to coordinate a ride for her or ask somebody if they’d be willing to come with us. My husband went to all of them because it’s his daughter, of course. But normally, I would just take off and go with her, and maybe he would meet us there halfway through. It was annoying to me to always have to ask for something, to ask for help. I’m not used to doing that.

Over this past year, I’ve learned it’s okay to ask for help. Nobody’s upset about doing it. People actually want to help; they just don’t know how to. If you’re able to actually ask for the help, then people will happily give you a hand. If they don’t, then those aren’t the people that maybe you need in your close circle at that time. Right now, I just need the people who are going to matter the most when I’m going through the hardest thing I’ve ever gone through. That’s what my circle is to me. They’re the people I would call no matter what.

How lung cancer changed my marriage

It’s weird to say, but I feel like this has been harder on my husband than on me. I think he internalized a lot of this pain, and I quickly tried to move into “What’s next?” mode. I don’t like to wallow in what’s happening. I’m just, what can I do next? How can I get better next? How can I get to the next thing? What’s the next landmark I can get to?

In the very beginning, my husband was emotional. I think he just looked at me and was sad. When you think about your future with someone — we’ve been together since we were 15 years old — to be 44 and still together and in love, it’s hard to look at your future and imagine it not with that person. We haven’t known a life without each other. That’s really hard.

It has probably made us closer, but we were already so close that it’s hard to say we’re closer now. There’s a difference in the kind of respect. I think he sees me as a fighter, and I see him as a fabulous caretaker. Once I started to feel better and feel like myself, we went back into our old roles, which was really nice, but with an extra layer of care. I don’t know that you really get that without having something like this in your family.

You care for each other and your spouse when they’re sick with a cold, but there’s a whole other way of caring for someone when they’re sick with a chronic illness or with cancer. That deepened the love and care between us.

Mom guilt, teen sports, and white ribbons

I’ve never put myself first, and that was a very big wake-up call for me — to put my health, my emotional health, and my mental health at the forefront. Those things all needed attention. I took nine months off work while I was battling my first year. During that time, once I started to feel better, I was prioritizing myself. It was the Stephanie Show. I was going to yoga twice a week. I was grabbing lattes with my friends. Whatever made me feel good and filled my bucket, that’s what I wanted to do.

A lot of what I wanted to do was spend time with my girls. It was amazing to be home for the summer with them. I got to say things like, “Let’s just go run to the beach today because it’s a Tuesday and we can.”

Part of my mom guilt was that I felt guilty in the beginning, which was silly because I couldn’t help it. I felt guilty that my daughter was on a new team. She didn’t really know anybody yet, and her mom was dragging around an oxygen tank to the games. Her mom was the one who maybe couldn’t be social with people, because I didn’t have it in me. I was exhausted, or I had masks on, which made me look very “don’t approach.” I did feel guilty for that.

I felt like, “I hope I’m not alienating her with these new friends because they don’t really understand what we’re going through.” I wasn’t sure if she was telling them what we were going through. I might just look weird to other kids. I had that guilt until she showed me something that makes me emotional even now. She showed me that they had all tied white ribbons to their sneakers, the whole team. The white ribbon is for lung cancer. They all tied white ribbons to their shoes, not even knowing me and barely knowing her.

That let go of that guilt because I realized she wasn’t embarrassed by it. She had told them, and they see me showing up still. So I’m okay. I’m going to be okay. She’s going to be okay, and we’re going to get through this. By the end of her club season, I was great. My tumor burden was down almost 55 percent within those first three or four months. I knew I was on track to become healthy and be myself again. I let go of a lot of that guilt because I recognized quickly that they’re going to be okay. The girls are good. They accept me for who I am, and they understand the diagnosis now. They can explain it to other people, and it doesn’t hold me back from being a good mom for them.

One year after my stage 4 ALK-positive diagnosis: reflection and advocacy

It has helped me prioritize what’s important to me. I actually had my first anniversary this week, and I spent it at the spa because that’s what I wanted to do. Again, I’m prioritizing what makes me feel good and what makes me feel whole. I took a day to relax and reflect, and unplug from work so that I could really focus on myself and my family.

At the one-year mark, I recognized that what’s important to me now is my family and myself, but also advocating. I need people to understand that people do not get cancer maliciously. When people look at you and say, “Oh, it must be because you did A, B, or C,” whatever people think a risk factor you’ve “caused” might be — nobody’s asking for cancer. We need to do a really good job of researching and continuing to advocate for those who are fighting it and for those who are living with the people who are fighting it, because those people need to be heard and seen as well.

My work is in corporate philanthropy, and I have been in that field for about 20 years. Over time, I hadn’t really found my deep connection with one particular nonprofit that I get behind. Mostly because of the kind of work I do, I tend to support whatever I need to in the moment — something I’m running for work or something I’m affiliated with because of work.

Now I am very clearly driven by my own diagnosis. This is something that I work on communicating about. I want people I know to understand ALK-positive cancer, and I want people to understand lung cancer in general, especially in younger people, more and more often. For me, it’s been an eye-opening experience to turn this into something positive. I have a real driven purpose and mission in life about ALK-positive cancer now.

My kids have been great about trying to find ways to affiliate themselves with volunteering and getting involved in things. They support a lot of groups and clubs that have to do with cancer in general. What I’m really excited about is a future where I have more time because of the research being done and the drugs and treatments being manufactured now. They will give me more time with my family and more time to advocate on behalf of those who will eventually find out that they also have ALK-positive lung cancer.

It’s important to me that people who are coming into this and who are young and just starting their families know that they have time with their families. It’s not as terrifying, perhaps, as what we all thought it was when we first got diagnosed. Rather quickly, you learn more about ALK and how you have hope.

Thank you for sharing your story, Stephanie!

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Learn about Lung Cancer Biomarkers

NSCLC Biomarkers Jill Feldman and Dr. Lovly Interview

What does “biomarker testing” actually mean in lung cancer? How can it change your treatment options? Jill Feldman and Dr. Christine Lovly explain it in plain language, including tissue vs. blood testing and questions to bring to your next appointment.

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Treatments: Radiation therapy, targeted therapy (tyrosine kinase inhibitor, osimertinib), surgery (spinal fusion surgery), chemotherapy (through a clinical trial)

Megan F., Non-Small Cell Lung Cancer, ALK+, Stage 4 (Metastatic)

Symptoms: Chest pain, anxiety, shortness of breath, arm pain and swelling, back pain

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Clara C., Non-Small Cell Lung Cancer, ALK+, Stage 4 (Metastatic)

Symptoms: Pelvic pain and discomfort, bladder issues related to pelvic tumors, incontinence, pain in the lower back and hip
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Stephanie K., Non-Small Cell Lung Cancer, ALK+, Stage 4 (Metastatic)

Symptoms: Persistent and intense cough, general feeling of sluggishness

Treatments: Chemotherapy, targeted therapy through a clinical trial, radiation therapy

Ruchira A., Non-Small Cell Lung Cancer, ALK+, Stage 4 (Metastatic)

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Treatments: Surgery (lobectomy), targeted therapy

Tags ALK+, Biomarker Testing, stage 4

Autologous stem cell transplant Chemotherapy Hodgkin Lymphoma Immunotherapy Metastatic Patient Stories Stem cell transplant Treatments

“I Knew It Was Back”: How Amanda Knew Her Hodgkin Lymphoma Was Back

Post author By Chris Sanchez
Post date February 4, 2026
No Comments on “I Knew It Was Back”: How Amanda Knew Her Hodgkin Lymphoma Was Back

February 4, 2026

“I Knew It Was Back”: How Amanda Knew Her Hodgkin Lymphoma Was Back

A cancer relapse in college was never part of Amanda’s plans, but it became the defining experience of her junior and senior year. Diagnosed with stage 4 Hodgkin lymphoma as a junior in high school, Amanda went through grueling treatment and reached remission, only to later face a relapse as a junior in college at Baylor University.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

In the months before her relapse was officially confirmed, Amanda noticed an alarming 15-pound weight loss that she couldn’t explain, and this led her to suspect that the Hodgkin lymphoma had come back, even though her bloodwork looked spotless. Although her oncologist initially reassured her, she still pushed for a scan. She later opened a MyChart notification in the middle of a college final and her heart sank. After the final, she read the words “likely relapsed disease” out loud to her mom over the phone, describing a moment of shock that quickly turned into survival mode.

Amanda’s Hodgkin lymphoma relapse also meant confronting big medical and life decisions. She chose to switch from an adult hospital to a children’s hospital where she felt more seen as a young adult, pursued second opinions at MD Anderson Cancer Center, and completed one round of egg freezing before starting more intensive treatment. Her treatment path included immunotherapy, chemotherapy, and an autologous stem cell transplant, and she now has immunotherapy maintenance every three weeks.

Recovery after her stem cell transplant was brutal — weeks of mucositis, nausea, passing out from dehydration, and readmission when a seizure-like episode raised suspicions that she was also experiencing neurologic issues. Amanda describes the first 100 days post-transplant as the longest and hardest of her life, but she celebrated small but meaningful victories like walking laps around Target and finally tasting food again.

Amanda’s Hodgkin lymphoma relapse has reshaped how she sees herself and her future. She returned to Baylor, danced at the famous Pigskin Revue just months after needing a walker, and now views exams and deadlines through a different lens: “If I can get through a stem cell transplant and fully recover from it, I can take my Spanish final on Friday.” She is committed to sharing her experience to offer other patients something priceless: hope.

Watch Amanda’s video and read the edited transcript of her interview below for more on her story, and click here to read about her first Hodgkin lymphoma experience.

Listening to your body matters: Amanda noticed rapid, unexplained weight loss and trusted her gut to ask for a scan, even when her bloodwork looked normal
Self-advocacy is essential: Her insistence on further testing led to the detection of her Hodgkin lymphoma relapse in college, and her doctors ultimately supported her choice, emphasizing her autonomy
Treatment plans can evolve: Amanda moved hospitals, pursued second opinions at MD Anderson, tried immunotherapy first, and then transitioned to chemotherapy and a stem cell transplant when needed
Community and connection — in Amanda’s case, family, friends, peers with similar diagnoses — can offer grounding and hope in a time when so much feels out of control
Meaning-making beyond treatment: Amanda now uses her experience to support others, from answering messages from patients in transplant to contributing to advocacy efforts like the Give Kids a Chance Act

Name: Amanda P.
Age at Diagnosis:
- 20
Diagnosis:
- Hodgkin Lymphoma
Staging:
- Stage 4
Symptom:
- Sudden, unexplained weight loss
Treatments:
- Immunotherapy
- Chemotherapy
- Autologous stem cell transplant

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.

Transcript of Amanda’s Interview

My name is Amanda
My cancer experience to date
Life between my diagnosis and relapse
How I knew the Hodgkin lymphoma was back
My relapse was confirmed during a college final
How much I understood about relapsing
Why self-advocacy matters so much
How my second diagnosis felt different from the first
Why I switched hospitals after relapse
Immunotherapy, second opinions, and my final treatment plan
Making fertility decisions in college (freezing my eggs)
Processing the reality of a stem cell transplant
Why going back for the fall semester mattered so much
How I mentally prepared for my stem cell transplant
Losing my hair for the second time
My community showed up for me
What my stem cell transplant was like physically
Recovering from my transplant
Reaching day 100 after my stem cell transplant
My 100-day celebration party
How day 100 felt emotionally
Adjusting back to college after transplant
What this last year taught me
What my maintenance treatment looks like now
How it felt when my first video went viral
How much it means to me to share my story

My name is Amanda

I am originally from Dallas, Texas, but currently live in Waco, Texas, and I was diagnosed with stage 4 Hodgkin lymphoma in May of 2021 and then again in December of 2024.

My cancer experience to date

I first had a bunch of different symptoms in my junior year of high school, which led to the diagnosis when I was just finishing my junior year. I went through six months of chemo and was in remission, but then, when I was a junior in college, I had a scan that showed my relapse.

Since then, I have done immunotherapy, a few rounds of chemo, a stem cell transplant, frozen my eggs, and now I am currently doing an immunotherapy maintenance treatment.

Life between my diagnosis and relapse

It is really a lot of the same, getting back to the same, and trying to just live my life as best as possible. I am still a Young Life leader at Lorena High School, and I am still a Tri Delta at Baylor. It has been a lot of super fun things during homecoming and semi-formal and different events like that, which have been a blast.

A highlight was definitely what we call Pigskin, which is a super niche Baylor thing where we sing and dance on stage. All of the sororities and fraternities do it, but it is a competition in the spring, and the top eight get to go back and then perform at homecoming, and I was able to be a part of the homecoming performance, which was super fun and super awesome. That has been a really big highlight, along with spending a lot of time with friends and family; my little sister just went to college, and I recently got to visit her, so a bunch of exciting things like that.

How I knew the Hodgkin lymphoma was back

I knew I had relapsed before any doctor, any scan, any blood work. I had noticed in early November of my junior year — so just a year ago now — that I had been losing weight, and I know my body very well. I do not lose or gain weight very easily; it takes a lot for me to be able to lose weight, and my weight just does not fluctuate.

Noticing that I had lost almost 15 pounds out of nowhere was definitely a big teller. I could tell by looking in the mirror that my clothes were not fitting right. I went to my oncologist about it and asked, because that was really just about my three-year mark. I was going in for blood work, and they said, “Let’s see how this goes,” and that came back completely normal.

He said, “If you are still a little on edge about it, if you are still a little nervous, we can schedule a scan,” and it was literally a couple of days later that I said I wanted the scan, so that was scheduled. During that whole time, I did not want to tell people that I was nervous or that I knew; I would say, “We will see what happens; we will see what the scan shows,” but deep down I had a gut feeling, and I knew it was back.

My relapse was confirmed during a college final

How I found out it had officially come back is a really funny story — not funny at all, but a little bit. I was at a final for my communications class; we were doing our final presentations. I had just finished presenting, got back to my seat, and opened up my laptop, and I saw that I had gotten a notification from MyChart. This was a Saturday, may I add.

I remember it so vividly. My heart sank, my heart was racing, but again, in class, I could not show it. My friend had driven me to class that day, a good friend but not a close friend, so I could not really tell her what was going on. I remember getting in this girl’s car and driving home, being absolutely terrified; I literally could not breathe.

When I got home, I called my mom and said, “Okay, I have the results; I am going to open those up and read them out loud to you.” I went up to my room, sat on my bed, opened up my computer with my mom on my phone, and literally just read, “Likely relapsed disease. These tumors in these places; they are four centimeters by five centimeters, and there is one here and one here and one here.”

I did not cry at first; I was in shock, and so was my mom. We were like, “Are you kidding me right now? This is what we are reading?” Eventually, I was like, “Okay, now what?” and she said, “I am on my way; I am driving there right now.” My dad was at the ranch house, or hunting lease, a little over an hour away, and my mom was in my hometown about two hours away, and both of them immediately got in their car and drove down here, which was very kind.

For those couple of hours, I was just here. I brought my laptop and walked across the hall to my roommate’s room, looked at them, and said, “It is back,” and that was when I started crying. The rest of that day was spent in my roommate’s bed, talking through what the next steps were.

I called my old nurse because she had ended up leaving at that point. I called her, and she said, “It is going to be okay; it will be okay,” and I said I needed to contact my doctor and that I did not have his personal cell phone number. She said she did, and she would call him. Then he called me and said he was so sorry, that I was not supposed to find out like this, but it was back, I did have cancer again, and we were going to do this chemo regimen.

He said it was probably December 14th, so we were ten days from Christmas. He said, “I will let you have Christmas, but on December 26th, you are coming in for a biopsy, and we are starting chemo before New Year’s.”

The rest of that day, my parents came, and it was really hard to see them. The rest of the day, I was in survival mode. I booked a hair appointment and said I was bleaching my hair and going platinum blond because I did not care how damaged my hair would be anymore. I had spent the last three years growing it out to the length it was, probably here-ish, and I did not care anymore; I was going to bleach it.

I booked a hair appointment for, I think, either the next day or the day after that. I had a Christmas party that night, and I thought, if I am not coming back to Baylor next semester, I am going to this Christmas party. I went to the Christmas party hours later, which, looking back, is kind of crazy, but I do remember pretty much every single hour of that day very vividly. That is how I found out; there were a lot of tears, but after the initial shock wore off, I think I bounced into survival mode so fast.

How much I understood about relapsing

It had always been a thought in my mind. I had a really bad habit of saying, “When my cancer comes back,” instead of, “If my cancer comes back.” That was a “me problem,” not anyone else’s problem. My doctor had told me that if it was going to come back, it would happen within the first two years, and after I hit the two-year mark, I thought I was home free.

I thought I was chilling and we were good. When it came to the three-year mark, seeing my doctor and all those things, and me having to ask for the scan for my own well-being, they really did not expect it at all. They were just as shocked as I was, maybe even more, because of how well I had done over the last three years.

My blood work was spotless. The first time I was diagnosed, my blood work was a mess, and my blood work being in pristine condition this time also made them not really think that relapse was a possibility. When it came to telling me about the diagnosis, I read it through MyChart and then was able to get a phone call after telling my nurse I had found out. She did not even work there anymore, and I said, “Hey girl, this is what is going on; I need you to contact my doctor right now.”

Finally, he called me and walked me through what he would consider the next steps, which ended up not even being what we did. He was very much like, “This is what we are going to do; this is when we are going to do it,” and walked me through the whole thing within hours of getting the diagnosis.

Why self-advocacy matters so much

Every person knows their body best. Nobody can tell you how you feel; you know how you feel. I could tell my doctor all day that my body does not fluctuate in weight, but they could sit there and say everyone’s weight fluctuates, that I was fine, that ten pounds is nothing, and that I should be happy or thrilled that I was losing weight without trying.

In reality, most girls my age would probably be jumping up and down at that, but I was literally terrified. Not even because weight loss was the first symptom for me in the beginning, but because I knew a lot about my kind of cancer. With Hodgkin, a really big first symptom is weight loss — unintentional, within a couple of months, losing somewhere in the double digits.

My doctor was really great in letting me choose what I did in order to have reassurance. He said, “If you want a scan, we can get you a scan. I can tell you that you do not need one, but it is ultimately your choice. You are the adult in this situation; it is your body.” His giving me that autonomy was really kind.

How my second diagnosis felt different from the first

They were very different feelings. The first time I was diagnosed, I was naive; I did not know what the future held. I did not know what I was going to go through or how it was going to affect me. I did not know how chemo felt, I did not know how I would look bald, and I just did not know.

Because I was so unaware, I got to live in this bubble of, “I do not know, but we will see.” That is not the case for everyone; a lot of people hear “cancer” and are immediately scared, but my doctors at the time did a really good job of reassuring me that I would be okay, that I would be fine, and that we would get through it. I was very naive and unaware of what I would go through the first time.

The second time, I knew exactly what was going to happen. I know how much chemo sucks, I know how painful the grow-out hair phase is, I know what it feels like to not have an appetite and how awful mouth sores are. Because I already knew, I was filled with more dread and fear, especially with the stem cell transplant looming over my head.

I had been told pretty much since day one that if it ever came back, I would get a stem cell transplant, and having that looming over me brought a lot more dread and fear the second time around.

Why I switched hospitals after relapse

Originally, they had told me I was going to start chemo pretty much immediately, and then as soon as I hit remission, I would have a BEAM auto stem cell transplant. They said I would get a biopsy to confirm it was, in fact, the same type of cancer, get my port placed, be admitted, and do chemo.

I had been saying for a long time, as a 17, 18, 19-year-old going to the adult hospital, that I hated it. I despised that place; there are lots of bad memories there. Everyone there is generations older than me, and I did not really feel seen or understood. There were a lot of things my doctor would not really think about, like how the chemo would affect my pulmonary function 40 years down the line, because most of their patients are already 60, 70, 80 years old and are not going to live another 40 years, so that is not where their head goes.

I had said from very early on, especially after meeting so many friends online at children’s hospitals, that if I ever relapsed, I would move hospitals, go to the children’s hospital if I still could, and start from scratch. A mix of bad memories, PTSD, anxiety surrounding my old hospital, and wanting a different perspective this time around led me to switch to the children’s hospital.

I got a whole new care team, a whole new hospital, and a whole new set of nurses. A lot of my care team from the previous time had left, so it was really just my doctor still there, and I was already going to have new nurses and a new PA. Switching was not the biggest change, and looking back, I am so glad that I did.

Immunotherapy, second opinions, and my final treatment plan

Those doctors said, “No, slow down. You have time. Hodgkin is thankfully a very slow-growing disease.” I was able to do two rounds of egg freezing and now have 12 eggs in a freezer, which is super great and something I am really thankful I had the opportunity to do.

They said, “Let’s not jump to chemo if we do not have to yet; let’s start with something that might work first,” so we started with immunotherapy. I did a couple of rounds of that and ended up getting secondary opinions at MD Anderson, bouncing between the children’s hospital and MD Anderson.

Unfortunately, at MD Anderson, I was in the adult wing, and I was bouncing between the two — doing hometown treatments at children’s, going to MD Anderson, which made the final call on all treatment protocols. I did immunotherapy for a bit; it worked, but not as well as we wanted, and that scan was really hard.

We immediately jumped into the chemo regimen that my doctor had wanted to do previously, but luckily, I only had to do two rounds of that. Then I was in remission and able to go into my stem cell transplant, which I had done at MD Anderson because they had a slightly different regimen. Now I am back at the children’s hospital, doing my immunotherapy.

It has been a lot of bouncing around, different decisions, and different opinions; we went back and forth on what treatment to start with about a million times, but that is what we ended up doing.

Making fertility decisions in college (freezing my eggs)

I was very grateful that I had the time and that option. I know that is not an option for everyone and that I am definitely in the lucky few who can do this. It was really a no-brainer to do it at least once.

I did the first round of freezing to see how many we could get. I knew my egg supply was not at 100% because of my previous treatment, but we knew it was still there. After the first round, we got seven eggs, and I was told the “magic number” was ten, meaning ten would “guarantee” you one child.

That was really hard and involved going back and forth between me, my parents, my doctors, and all the people involved in deciding whether to do a second round. They said the second round would probably yield fewer eggs, but it would probably bring that number up to ten and could almost guarantee a child rather than just seven.

We had to decide whether to start treatment right away to get rid of the cancer or do another round of freezing, which would postpone treatment by about two to three weeks. I found out about the relapse in mid-December and did not start treatment until mid-February. Giving it all that time to grow and spread was not comfortable, but looking back, I am really glad I did it.

The decision to actually do egg freezing was a no-brainer, but the decision of whether or not to do it twice was harder.

Processing the reality of a stem cell transplant

I was terrified. I was fully, fully terrified. I had never been in the hospital for that long before, and the decision of whether to do it at MD Anderson or at home in Dallas was really hard; we went back and forth on that forever.

I was terrified because of how many risks it would bring. Pretty much the only word I can think of is “absolutely terrified.” I talked a lot about it with my therapist and how terrifying it was going to be. There were a lot of unknowns — I did not know what was going to happen or how I was going to react.

My doctor or a nurse told me, “We are pretty much going to bring you as close to death as possible and then save you,” and that was terrifying. I think my stem cell transplant doctor did a decent job preparing me for what to expect. He said I was going to lose probably upwards of 30 pounds, would not eat for a long time, my taste would be messed up, I would have horrific mouth sores, lose all my muscle, and be empty.

I thought, “Okay, this is real, and this is coming up.” I wanted to get it done as soon as possible because the sooner I could get it done, the more time I would have to recover until the fall semester. The goal, from the second I was diagnosed through treatment, chemo, and the stem cell transplant, was getting back to school in August. I thought, “I just need to be able to get back to school in August, and everything will be okay,” and having that goal helped.

Why going back for the fall semester mattered so much

The “decision,” which was not really a decision at all, was that I was forced to stay home that spring semester. That was really hard; I did not realize how hard it was going to be. I drove back and forth as much as possible, and every time I went into the clinic, they would ask if I was going to Waco that weekend, and I would say yes.

I just wanted to be back. It was my senior year, and having my independence stripped away from me after not having it for that long — and stripped away without any choice — was really hard. It gave me a good goal and something to look forward to through such a difficult time.

I really wanted to be back with my friends and get back on track with classes and everything to continue moving forward in my life.

How I mentally prepared for my stem cell transplant

In the weeks and months leading up to the transplant, there was a lot of impulsivity and trying to enjoy everything as much as possible. My biggest fear was that the transplant was going to kill me, and that thought loomed in the back of my mind.

Leading up to it, my doctor would warn me that going to my sorority formal with hundreds of people was not the best idea when I was neutropenic, and I would say I did not care and that I would be there. I put my N95 on and went to the sorority formal.

I did not go on big vacations; we did a spring break trip, and I had a New York trip planned that ended up getting canceled. I focused on seeing my friends as much as possible, hanging out with them, going shopping, going line dancing, going to all of the sorority events, and doing everything I could possibly do.

I did my very best to do as much as possible because I have bad FOMO, and I had that thought in the back of my mind — what if this is my last shot or my last time? Doing as much as possible was the priority; some of it was probably dangerous, but here we are.

Losing my hair for the second time

The second time around, losing my hair was almost the same as the first time, but not quite. Again, I went platinum blond for a couple of months. I did not lose my hair until the end of March, right before I started chemo, after a little bit of immunotherapy and a couple of rounds of chemo.

Before that was when I shaved my head. I had a scan at MD Anderson that showed the immunotherapy did not work as well as we wanted and that we would have to do chemo. I immediately texted all my friends and said I was on my way to Waco and that we were going to have a buzz party that night because I was getting chemo the next day.

This all happened within 48 hours, and every single person I texted was there, which was awesome — that they were all able to drop everything and be there for me. It was a really kind and really awesome memory for a not-so-awesome occasion.

My friends and I went to get bleach, hair ties, and scissors, and we also got a cake. The cake said “In My Britney Era” to commemorate my buzzcut.

There is a super cool organization based out of Florida that makes halo wigs out of your hair. One person’s full head of hair is not enough to make a full wig, but you can make a halo wig where the hair is sewn on a track that goes from your temples all the way around, with a sock cap on top. I could wear that, put my hat on, and you would never know it was a wig — and it was my real hair.

We sectioned off my hair into tiny ponytails and cut those off, then shipped them off. It was important to shave my head before starting chemo so I could send them as much hair as possible. All of my friends took turns cutting a ponytail, and eventually I had a really messy buzzcut. Then we took clippers, evened it up, and bleached it to go platinum buzzcut, which was pretty epic.

I loved the look. Again, I had a buzz party complete with cake and everyone taking turns cutting a piece; some of the same people as last time, but mostly different because it was in my college town, with all my college friends and my siblings coming down for it.

My community showed up for me

They are literally some of the best people ever.

The people I have met at Baylor are some of the best people I have ever met.

My community, my friends, and my family are probably the most important things in my life.

What my stem cell transplant was like physically

The transplant itself was pretty successful. I got a central line, did a bunch of chemo to knock out everything, and then got my stem cells, and that whole process was not that bad. The chemo did not feel super terrible in the moment, and the G-CSF shots leading up to it were not the most painful.

There were a couple of instances where I was left in a lot of pain, especially when I got my port removed and my central line placed at the same time, which left me in a lot of pain and landed me in the ER for pain minutes after. That was really rough.

So much of it is a blur; I think my brain has tried to block out a lot. There were a lot of tears, and I remember having sores in the corners of my eyes from crying so much. I was really just in and out of sleep, talking nonsense according to my parents, not keeping much down, not eating a lot, and not moving a lot.

I did my best; I loved the PT people — they were lovely humans — but I hated when they came to my room and made me do laps around the hallway. MD Anderson had a really cool system where you would do laps and collect little paper stickers, and when you had 12 (equaling a mile), you would get a bandana to tie around your IV pole.

We would say, “Okay, today we are going to walk two laps around the floor.”

Recovering from my transplant

Staying on the floor for so long and not being able to leave was really hard, especially at first; I was so antsy and kept asking them to let me leave. Later, it got to the point where I was so out of it that I did not realize I had not breathed fresh air for three weeks.

The recovery was the hardest part. From about day +3 or +4 up to around day +30 were the hardest and were unbearable. It was a lot of my parents saying, “Okay, Amanda, let’s walk to the couch today.”

It was a mix of feeling very depressed and hopeless, feeling like I would never gain my strength back, and also feeling so exhausted and broken down that I said no. My parents could ask me to walk down the hallway as many times as they wanted, but it was up to me and what I decided to do.

I had a very scary moment about five or six days after I got out of the hospital. I had gotten out on day +13, which was really early compared to a lot of people, and I should not have gotten out that early, because I just landed myself right back in.

I had such bad mucositis, lost all my taste buds, and could not taste anything. I was still incredibly nauseous from all the chemo. I was eating and drinking almost nothing; I had about eight ounces of chicken broth once a day, maybe a little water to take my meds, and even half the time that would not stay down.

I was back at the doctor’s office for blood work a couple of times a week post-transplant while living in Houston, but not inpatient. I was sitting there with my mom and sister, and I said I felt really hot. I was wearing a sweater, so my mom came over to help me take it off, and I passed out.

I went unconscious. I do not remember it, but according to my mom, I was having a seizure-like episode. My doctor immediately said I was back on the floor, and I got readmitted that night. The same thing happened two more times.

It was a really scary couple of days trying to figure out if it was a seizure or something else. We had a scan that showed a weird thing in the back of my brain, and they did not know what was going on. We still are not fully sure, but we think it was due to a sodium imbalance from my not eating or drinking at all.

Throughout this whole year, I had passed out a handful of times, mostly from dehydration and not being able to keep things down or wanting to eat or drink. Passing out was not new to me, but whatever else had been going on was new.

That was a big setback in recovery. After that, I just felt like I needed to get home; I could not be in the city of Houston for one more second and needed out. Soon after that, they gave me the green light to go home, and I was able to go back to my family.

Getting out of there was awesome, and being back home with my siblings, parents, cats, and hometown friends (who were home because it was summer) was really great. Getting back home helped a lot and sped up recovery.

Reaching day 100 after my stem cell transplant

It was rough to get to day 100. It was the longest and hardest 100 days of my life. It was a lot of sleeping and a lot of walking; my dad and I would do laps around our living room.

We spent a lot of time trying to find foods that would sit well, foods I could taste, and that did not taste like cardboard. We started with cheese, cucumbers, and Cheerios, and were on the cucumber, cheese, and Cheerio diet for a while. I went through boxes and boxes of Cheerios.

I spent a lot of time in bed, pretty much all day, sleeping, then getting up to walk a couple of laps around the living room. A hard thing was that it was summer in Texas, so it was blazing hot outside. As someone with no energy, getting outside in that heat made it impossible to do anything.

The first time I was out of the house, we went to Target and TJ Maxx, and I thought this was my big outing, walking around the store. I was using a walker to walk most of the time and was not able to walk unassisted. Being able to go to the store and use a grocery cart as my walker gave me a sense of normalcy.

I used shopping as exercise, walking around the store, which got me out of the house and out of bed and gave me a little normalcy. That summer, everyone else I knew was studying abroad, doing internships, and traveling, and I was looking forward to going to Target for 45 minutes.

That is how I spent pretty much those 100 days of summer, since I got my transplant on May 29th and my 100-day mark was on September 6th. Getting my taste back and going back to all my favorite restaurants was really fun. I spent a lot of time shopping and with my friends and family.

My 100-day celebration party

Getting back to school was awesome. About a week and a half into school, my 100 days hit, and the party was epic. It was so fun and awesome.

There were decorations, a ton of balloons, and catered food. I want to say there were about 60 people there, a mix of hometown friends, my parents, my parents’ friends, family friends, and a couple of other cancer survivors, which was really cool.

We did a lot of talking and had a good time together. We took a lot of pictures. I got to share the speech I was going to give two weeks later in DC with all my family and friends, which was super cool. My grandparents flew in for it. It was epic and so fun.

How day 100 felt emotionally

The first 20 to 30 days post-transplant were incredibly hard, but it only got easier. Once I hit about the 45-day mark, things felt like they were plateauing, and I was getting more frustrated, feeling like I was not improving as fast as at first.

That was really hard. The closer it got to day 100, the more excited I was, as things were starting to get back to normal — going back to school, being able to eat good food, going to classes, and being able to walk on my own.

I have amazing friends who have gone through transplants before. One girl in particular, my friend Elena, also had Hodgkin twice and got a stem cell transplant the second time. She is really the only person I know who had an auto transplant for Hodgkin lymphoma.

I talked to her all the time, asking what she did when certain things happened, how she felt, and how she got through it. Having someone like her to guide me through all the different things was so great and helpful to give me hope. Her transplant had been exactly a year prior, and seeing her one year out — studying abroad, living her life, and doing great, fun things — gave me hope.

Seeing her in that state made me think that if someone else had done it, I could do it. Having her encourage me along the way was very helpful and crucial.

Adjusting back to college after transplant

There was definitely a learning curve in trying to figure out how to balance my time and recovery. I needed more sleep and naps, and sometimes I did not have the energy to do my homework or make it to class.

My professors have been wonderful in working with me and helping me in the transition, which was great. It was harder at first.

We had Pigskin, and a big goal for me was being able to dance on that stage at the end of October. When that happened, it was very emotional and bittersweet. After the last show, I thought, “Wow, I did that.”

I was not able to walk on my own five months prior, and now I was dancing on stage in front of thousands of people. That was a huge, pivotal moment for me and a big “Wow, I did that, and I am back.”

It was definitely a transition at first, but worth it. All of the help from friends, family, and professors made the process ten times easier than it would have been.

What this last year taught me

What I have learned the most is that I can literally do anything. When things come my way, I think that nothing will ever be harder than what I went through this year. Nothing will be worse or as hard.

If I can get through a stem cell transplant and fully recover from it, I can take my Spanish final on Friday. It makes everything else feel less daunting. I could be super stressed out about this Spanish final — should I be more stressed? Yes, but it does not affect me as much as it might affect my peers.

A lot of my peers are super stressed; they say they need certain dates for events, or that they need hours to study for an exam, and cannot go to social things because they need to study. I think, “I did not survive that, live through that, and work my butt off the last six months to get here and cancel plans.“

I am not doing that. I am doing as much as possible because I can. I am grateful and honored to be able to do things, go to social events, hang out with my friends, and do fun things; I am not canceling.

I am not letting things stress me out on so many fronts. That is one of the biggest things I have learned.

I have also learned how amazing my friends and my community are. I have grown closer and spent so much time with my sister, parents, and brothers.

Someone else said this, not me, but it was an awful circumstance to have to move home, rely on my parents so much, and lose so much independence, but how many normal 21-year-olds can say they got that much one-on-one undivided attention from their parents?

As much as I hated the circumstance I was in, I was also really grateful to have that time with my parents that most people my age are not getting. I have also learned how amazing and “freaking” awesome all of my friends and family are, and have seen everyone show up, which has been cool to watch.

I have met even more people online through all of this and have been able to speak to people about my experience and get legislation changed. As of right now, the Give Kids a Chance Act has been passed in the House of Representatives and is about to be voted on in the Senate, and being a part of that has been really cool.

There have been a bunch of different opportunities that I would not have had otherwise, so there are a lot of things to be grateful for.

What my maintenance treatment looks like now

Right now, I am doing maintenance treatments of immunotherapy every three weeks. I go into the children’s hospital and get that infusion. I am going back to MD Anderson for scans every six months.

In between those six-month scans, I am doing blood work and maybe scans at the children’s hospital. Again, it is a lot of going back and forth.

I have three more infusions of immunotherapy. I should hopefully ring the bell for all of my treatment for the relapse at the beginning of February 2026, and finally be done with all treatment.

After that, I will have scans every six months and checkups in between.

How it felt when my first video went viral

I was just blown away. I was honored that so many people wanted to listen to me talk and that many people cared about what I had been through and wanted to hear my perspective.

One of the coolest things I have been able to do with my diagnosis is share my story, and seeing that in a quantified way was really cool. I felt honored.

When I was first getting diagnosed, I was trying to look for other people having the same symptoms that I was, and that is when I found The Patient Story. I thought, “This girl on this random blog five years ago was having the same symptoms that I am. Yes, she has cancer; I do not want cancer, but if that is the answer, that is the answer; there is nothing I can do about it.”

Being able to share my story and hopefully help people in a similar way that The Patient Story helped me in that moment was full-circle and really cool.

It means so much. It has truly been such an honor. The text messages I get from people saying, “I am about to go through this stem cell transplant,” or, “I just had a stem cell transplant, I am on day +10, and I am having a really hard time, but seeing that you got through that has helped me so much and given me so much faith and hope,” mean a lot.

If I can do one thing on this earth, it is to give people hope. If I can do that, I feel like I won a million dollars. It is so much bigger than anything else I could do in my life.

It is such an honor, and I am very glad and humbled that I have been able to do really cool things like this.

Thank you for sharing your story, Amanda!

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16 Years in Remission: Tristan’s Hodgkin Lymphoma Story

Post author By Chris Sanchez
Post date January 28, 2026
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January 28, 2026

From “Get Your Affairs in Order” to 16 Years in Remission: Tristan’s Hodgkin Lymphoma Story

Tristan’s Hodgkin lymphoma experience began just as he was stepping into adulthood, leaving his small hometown of Huntsville, Alabama, for college in Indianapolis and dreaming of a future working on diesel engines and railroads. In late 2006, what started as relentless itching quickly escalated. One night, after developing an unusually severe headache, Tristan noticed a lymph node on his neck that had swollen to the size of half an orange. Within hours, he was in a hospital room hearing the devastating words that would change everything: he had stage 4 Hodgkin lymphoma, and his life and plans were no longer on the path he imagined.

Interviewed by: Keshia Rice
Edited by: Chris Sanchez

Alone in a different state and terrified, Tristan describes an experience that shifted his perspective for the better. In the middle of that night, while he was in the hospital, a traveling pastor appeared at his door with a Bible verse that shifted Tristan’s focus from “Why me?” to “How do I protect my parents and family from this pain?” That moment of spiritual grounding, along with his father’s unwavering presence and support, became a turning point in how he viewed his Hodgkin lymphoma experience and his role within his family.

Back home in Alabama, Tristan started chemotherapy and radiation at the Clearview Cancer Institute. Initial remission came quickly, but so did relapse. More aggressive disease led to a harsher chemotherapy regimen, then an autologous stem cell transplant, followed by an allogeneic transplant after miraculously discovering a 99% donor match. Each time he heard, “Get your affairs in order,” Tristan refused to let the disease define him, even if it meant doing things his doctors hated, like skydiving and drag racing, just to live his life and feel in control.

Years later, Tristan is more than 16 years in remission and living with the long-term effects and financial weight of his treatments, including ongoing scans, specialist visits, and significant out-of-pocket costs. He speaks openly about feeling “less than a man” when his wife was the primary earner and he stayed home with the kids, and how therapy, perspective, and fatherhood helped reshape his sense of purpose. Today, Tristan is building a career, planning a new business, celebrating his “second birthday” every May 8th, and preparing to become a grandfather. His experience reveals not only the challenges of treatment for Hodgkin lymphoma, but also how faith, community, and self-compassion can help people rebuild a life they never thought they’d get to live.

Watch Tristan’s video or browse his transcript below to find out more.

Faith, spirituality, or a grounding belief can radically shift focus from self‑fear to caring for family and making meaning from a difficult diagnosis
Honest communication and strong support from loved ones, like Tristan’s father and wife, complements the chemotherapy itself in getting through a cancer experience
The financial impact of cancer and long‑term maintenance care can last for decades, shaping work choices, housing, and family plans even after remission
Resilience one has often becomes clear only in hindsight, especially when facing serious illness.
Tristan’s transformation runs from angry, impulsive teenager to intentional husband, father, and soon‑to‑be grandfather who plans ahead, builds community, and uses his experience to advocate for others

Name: Tristan C.
Age at Diagnosis:
- 19
Diagnosis:
- Hodgkin Lymphoma
Staging:
- Stage 4
Symptoms:
- Severe, persistent itching
- Appearance of large nodule in neck
Treatments:
- Surgeries (port installation, catheter placements)
- Chemotherapy
- Radiation therapy
- Stem cell transplants (autologous and allogeneic)

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.

Transcript of Tristan’s Interview

My name is Tristan
My early Hodgkin lymphoma symptoms
My emotional reaction to my stage 4 Hodgkin leukemia diagnosis
A visit from a traveling pastor changed my life
My father’s strength and the power of support
I started Hodgkin lymphoma treatment back home in Alabama
Chemotherapy and radiation, and the side effects I experienced
I relapsed and went on a harsh chemo regimen
We decided to undergo an autologous stem cell transplant
How my first transplant went and the life-threatening complications I faced
I had an allogeneic transplant: the miracle of a 99% match
My second allogeneic transplant and achieving remission
When the gravity of a stage 4 Hodgkin lymphoma diagnosis really hit me
Surviving cancer and dealing with crushing medical debt
Building a new career, moving, and still paying for my cancer treatments
Ongoing maintenance: scans, bloodwork, and specialist visits
Rebuilding masculinity and purpose after cancer
Survivor identity and accepting long-term risks
How cancer in college changed my 20s and 30s
I would still choose this life over my old one
Thinking about the future: 26 and 36 years out
Becoming a grandfather and living a life I never expected to have
My final reflections and advice for other patients

My name is Tristan

I’m in Huntsville, Alabama. I’m 38 and was diagnosed with Hodgkin lymphoma, stage four, in January of 2007.

You know, as every kid does, I had those grandiose dreams of getting out of the small town and going on to do bigger and brighter things. I left from a small town — well, it was a small town, Huntsville — to go to Indianapolis to start college. I always wanted to work with tractors and diesel engines and stuff. I grew up, as every kid does, seeing the big truck go down the road, trying to honk the horn and stuff. I wanted to work for the railroad and had envisioned myself being a single guy and just riding the railroad and seeing new places, and getting to live a life unlike anybody in my family had ever done.

I had the chance to break out, and it came crashing down so fast.

My early Hodgkin lymphoma symptoms

That was the one that almost put my nail in the coffin. I began college about mid‑August of 2006, and about a month into it, I got an injury. I’d cut myself pretty badly and had to have some stitches. About two days after I got those stitches, I started itching relentlessly. I mean, to the point where, even whenever I would try to sleep, I’d be in the fetal position, just steadily clawing myself. It was bad. The skin was coming off my legs, and it was not just isolated. It was widespread all over my body, but my legs were the worst.

To the point where I would take off my socks, and pieces of skin would come off with it. I’d gone to little walk‑in clinics, and I was told it was a laundry allergy, it was just anxiety, it was this, that, and the third. I was misdiagnosed five different times before the actual diagnosis came in. I was in school one night. I had to go to night school so I could work during the day, but I’d gone into class, and I got a headache, which was for me just the most bizarre thing. I’ve had like ten in my entire life. I’ve been so fortunate with that, but it was a sign that something was definitely wrong.

So I told my professor I’d go to the washroom real quick and wash my face. I’ll be back. When I went and I looked in the mirror, I saw a lymph node that popped up on my neck about the size of half of an orange, and immediate panic set in. I ran to the dean of the school and said, “Look, man, I am so far away from my family. I don’t know what to do. Please give me some help.” They called the paramedics, and I went to Saint Vincent Hospital in Indianapolis. They did some blood work. Within a couple of hours, a doctor walked in with a pack of papers and the most sour look on his face. Here comes the devastation. He explained it to me and put the brakes on hard, really, really quickly. I started to freak out. This was on January 7th,

My emotional reaction to my stage 4 Hodgkin leukemia diagnosis

The very first thing I’ll tell you is that if the window on the 11th floor of the Saint Vincent Hospital had been opened, I would have jumped out of it. I can tell you that it wasn’t, because I checked. I was instantly terrified. Not only was I the only one of my dad’s kids to be able to go to college, but now I have to tell or call and figure out a way to explain, “Hey man, I’m not going to finish school, but I potentially might not survive what’s about to happen.”

This is a part of the story that always gets me. I grew up in a family where religion wasn’t always at the forefront. We didn’t talk about God a lot. It had never been a subject I really even cared about. I was 18, 19 years old. I couldn’t see past Friday night at the time. But a doctor comes in; he’s really rushed in the way that he went about it. He’s like, “You’ve got Hodgkin. It’s very survivable, this, that, and the third, but I’ve got to do something. I’ll be back in a little while to explain a little further to you.”

I lay in the bed. This is about 1 a.m. I was laying in the bed and just going over every single thing in my mind, trying to figure out, to the best of my ability, what I was going to do next, who I was going to tell, how I was going to tell them, if I was going to tell anybody, if I was just going to disappear into the ether and go and do whatever or live through whatever may come.

A visit from a traveling pastor changed my life

A nurse knocked on the door. It’s about 3 a.m., and she said, “Man, there’s a guy out here that really wants to talk to you. Would you mind if I send him in?” “Please. I have no idea who he is, but please send him. I’ll talk to anybody right now.” This guy walks in, and he’s holding a Bible in his hand. I still have the Bible in my room here. He’s just flipping through it. We’re introducing one another. He said, “Hey, man, I’m a traveling pastor in Chicago. Something tells me you really need to talk to me tonight, and you have no idea what kind of hornet’s nest you just walked into.”

After a few moments, he stopped. When people say the expression “He was grinning ear to ear,” I saw it once with my own eyes. This guy looked at this book, and all you could see were teeth. He’s like, “Does this mean anything to you?” He turned it around and showed me Jeremiah 21:17: “You have been cast away and you’ve been called Zion, and I will take away all of your pain and heal your wounds for you, my child, and you will suffer no more.”

In that instant, it allowed me to pivot from “Oh, me! Oh, what do I do, what do I do?” to “How do I prepare my parents? How do I prepare my family? How do I give them the strength to watch what’s about to happen?” From that point, I didn’t worry about myself. It was more about them. I made the phone call to my dad that night—well, it was the morning. It was about 4:30 in the morning. I called and said, “I’ve got the craziest news you didn’t expect to hear, and this is what’s happening.” Being the rock of my life, my dad said, “What do we do next? How do we begin?”

“I don’t know. Just come. Come be with me.” It’s about a six‑hour drive from Huntsville to Indianapolis. It seemed like he was there in three. They put the wheels in motion. I had the support group that, from the moment I said, “I need help,” I had help, and I had God’s strength to help me along. That’s the part that always kind of trips me up a little bit.

My father’s strength and the power of support

I can understand where he’s coming from in my adult years. But at the time, I had never seen my dad shed a tear. I’d never seen him show any moment of weakness. It was several months into it before I actually started to see the stress take effect on him. He didn’t know anything about me. None of us did. Who is even supposed to know about cancer whenever you’re in a small town, or you’re a young person? Why should you know anything about cancer?

None of us was educated on the subject. Anytime I made a decision, or if I needed somebody to help make a decision, all I had to do was reach out and say, “Hey, guys, this is beyond me. What do I do?” Whether it was right or wrong, they supported everything I did through it. Support is one of the biggest facets of treatment that you can have. You have to have people to back you up, whether it’s family, friends, or you call a support line. There’s always somebody out there to give you that shove that you need, but you can’t do it all alone. You have to have somebody to lean on from time to time.

I started Hodgkin lymphoma treatment back home in Alabama

Thinking about school really didn’t bother me at the time. I was so absolutely concentrated and focused on the direct objective. I had an incredible team. I was diagnosed on January 7th of 2007. I got biopsied that night. They got the results on January 8th. On January 9th, I was back in Huntsville, Alabama. On January 10th, I was at Clearview Cancer Institute in Huntsville.

I met my oncology team for the first time — Dr. Jeremy Hahn and all of his incredible support staff. They had the plan right away. They knew exactly which treatment to use. Hodgkin is largely a very treatable illness, so they already knew what needed to happen. It was just trying to get my mindset right, to say, “All right, man, you have to listen to this. You have to buckle down. You don’t know everything,” because every 18‑, 19‑year‑old, we already know everything. Nobody can tell us anything.

I had to really be receptive to whatever news was going to come, whether it was bad or good. I had to learn how to listen and have a perspective other than, “Hey, nobody can touch me.” Within a week, I had a port put in, and we started treatment. My oncologist was second to none.

Sugar-coating is the worst thing. I can’t stand for somebody to try to give me the best possible scenario. Tell me the truth. Give me facts. Let me process how I need to, but give me whatever facts I need to be able to process. He was very straightforward with me. He said, “This is what we’re going to do. This is what kind of sickness you’re looking at. You’re going to be in bad shape for a little while, but the overall prognosis is looking really good.” We went from there. I was very blessed to have the team that I had, for sure.

Chemotherapy and radiation, and the side effects I experienced

Right off the bat, I started with my chemo regimen. The wildest drug I took was what nobody wants to hear, they’re about to get put into them. It turns your skin into a fluorescent red shade. Funny enough, that’s how my dad found out that I had a tattoo. “Well, you’re red. Let me see if the rest of you is like that.” He lifted my shirt and found out I had a tattoo, which was totally taboo at that time.

I think it was eight cycles of chemo. I went three days a week for eight weeks, and then right after that, I jumped straight into radiation. Radiation was pretty rough. They do the tattoos to get you lined up and everything. They forewent the little mesh mask because I’m so incredibly claustrophobic. I promised them, “I will not move if you just don’t put this thing on my face.” So someone went through that setup with me.

I didn’t lose any hair. I wasn’t really losing much weight. It was mainly trying to keep my sanity through all of it and trying to still wrap my head around the things that were happening. I achieved remission in July of 2007. I achieved my first remission.

I relapsed and went on a harsh chemo regimen

It was short‑lived. By October, I was right back in stage three, and it was more aggressive this time. It moved from just the neck and chest area to where I had 17 nodules in my chest. I had four in the groin, a couple more in my neck, and we were trying to decide what to do next.

He moved on to the next chemo treatment. This is where I really started getting sick, and I could really feel the weight of everything crashing in. I was not responding well at all. They kept saying, “You might want to start getting your affairs in order. You might want to get a living will.” “What are you talking about? I feel fine. What are you talking about?” I didn’t realize at the time, but I was still wearing clothes that I was wearing in college, but now they’re falling off of me. I’m having to cinch my belt up even tighter, and shirts are looking like nightgowns on me. So it really started to weigh in.

We decided to undergo an autologous stem cell transplant

I went through that from about September 2007 through about February or March 2008. With the limited response I was having to the chemo, doctors moved on and said it was time to try an autologous transplant, an autologous stem cell transplant.

At the time, I couldn’t hear that news. I was so emotional about everything. Again, my dad comes into play: “Tell this guy, if this guy says that it’s okay, then I’ll follow his lead. I’m going to believe and trust in him.” My oncology team was so incredible. The transplant staff at Clearview Cancer Institute — they were amazing. They laid out step by step what would happen. They put me through every part of it. I got set up for apheresis.

I was sitting in an apheresis lab every day with the phlebotomist. I was doing my lab draws every day. He’s coaching me on. He’s like, “You got it, man. You’re the strongest.” They really set me up for success. They gave me all the support staff. Different people came into my life at the time that really helped build me up and gave me the strength I needed to do that.

How my first transplant went and the life-threatening complications I faced

May 8th of 2008, I went into Huntsville Hospital to do my first transplant — it’s autologous. I spent 17 days in there. It starts with high‑dose chemotherapy. They take all of your bone marrow and all of your blood counts and everything to absolute zero. They kind of dangle you right there at death’s door, and whenever everything hits zero, then they give you your stem cells back, and then you wait for the graft.

You’re waiting on those stem cells to graft, and your blood counts start to rebound and stuff. Almost instantly, I’m starting to feel better. Kind of a side note: they told me right off the bat, “You’re going to lose your hair. Whatever you do, do not shave. Don’t use a number two pencil or anything that might puncture your skin. It’ll be a dangerous situation.”

So what did I do right off the bat? I got out of bed, and I shaved my head in the middle of the night while none of the doctors were there, and I nicked the back of my head and nearly bled to death over this. They had me wrapped like a mummy from here all the way around to keep me from bleeding out. I had to do transfusions and stuff.

Again, a 20‑year‑old kid not listening to anybody—“I’m going to do what I want to do.” Mistake. Mistake so bad. I got out of there in the middle of June. I walked out under my own power. That was my determination: I’m going to walk into this hospital, and I’m going to walk out of this hospital. I’m not going to be in a wheelchair. I’m not going to be carted out. I can do this. And I did.

The hardest part of any of that was actually coming off the pain medications. They overwhelmed me with the amount of pain medications. Largely, it wasn’t a physical pain I was dealing with. It was the mental anguish that I was going through: the inevitability of time running out and things left unsaid and things left undone.

I moved forward from there. It was June. By September, I had relapsed again. Now everybody’s backpedaling, trying to figure out the next treatment — what do we do now, and how do we get to the next step? I was given the treatment again. This time, I was responding a little better, but it still wasn’t a viable long‑term solution.

I had an allogeneic transplant: the miracle of a 99% match

Then we moved on to, “Now it’s time to do the allogeneic transplant.” I went in March of 2007 to get typed and matched — Dad, brother, mom, and any family that was available to go. We all went to Vanderbilt, which is in Nashville, Tennessee, to get typed and matched. I recall the doctor walking in and saying, “Nobody’s matched. You have very limited time.” This was the second time I was told to go home and get my affairs in order because time was very limited.

This goes back to God’s will and God’s power. I think it was March 21st of 2007 — the dates stick with you whenever stuff happens. March 21st, I’m told nobody’s a match. March 22nd, I wake up, and I have a voicemail on my phone. It’s Vanderbilt saying, “Hey, you have a 93% viable match. You can go ahead and start making arrangements to get back up here, and we’ll get this transplant underway.”

While I was on the phone, Vanderbilt beeps in again, and the lady is almost hysterical on the other side: “We have a 99% viable match. This almost never happens. We’ve never seen it here at this clinic. When can you be back?” My dad’s listening to it on speakerphone, and he’s grabbing me the whole time like, “We’re going now.” He starts moving me toward the vehicle, and we start making our way back to Vanderbilt.

My second allogeneic transplant and achieving remission

I get to Vanderbilt. They do the initial assessment. They have to restage me and see where I’m at at this point. Then we move on to what’s next. We have to wait on the donor to do apheresis and for his cells to get there. In the meantime, they’re keeping me on a therapeutic level of chemotherapy to try to keep me in place where I’m at.

May 8th of 2009, 365 days to the day from my first transplant, was my day zero for my second transplant. They say life begins at day zero. That’s whenever they give you all the high‑dose chemo, and they knock you down to absolute zero and dangle you again right there at death’s door and hope that the graft takes. I achieved full graft. Counts started rising.

I was still incredibly sick at this point. The amount of immunosuppressants and medications that they had me taking — some days it would be upwards of 150‑plus pills. By the time I swallowed everything, I immediately regurgitated everything because you have nothing in your stomach with these prescriptions. It took a little while.

Again, very diligent parents, very strong‑minded parents. Not a whole lot of people, I imagine, could sit and watch their child go through that. They had their poker faces on. If they were worried, I didn’t see it firsthand. Through conversations after the fact, they absolutely had their worries and their doubts.

I went through that entire summer, this is the summer of 2009, to the best of my ability, staying active. We had a gym there at Vanderbilt, so I would go down and try to lift weights or just get on a treadmill or just try to be social with somebody, somebody other than the medical staff. I got so sick of being sick. I couldn’t talk to these people anymore.

August 14th of 2009, I walked out of the building under my own power again. I got a PET scan a couple of months later — still in remission. Six months later — remission. A year later — remission. I just celebrated 16 years this past May 8th. 16 years in remission. January 7th of this coming year will be 19 years since I was diagnosed. Still in incredible health, in my opinion, having had a couple of transplants and all the things. It was a hell of a journey for a little while.

When the gravity of a stage 4 Hodgkin lymphoma diagnosis really hit me

The seriousness of the whole thing didn’t really hit me until it was all over. They told me to get my affairs in order, and like a typical child, I put the pedal down. I started partying with friends. I was, against my compromised immune system, going to parties and going to bonfires. I lived life to whatever ability I had.

All my doctors were furious with me more often than not. “This kid will not listen. Somebody say something.” What are you going to say? I have cancer. What are you going to tell me? That was my excuse; terrible excuse, by the way. But also, that’s what kept my mental health together: not allowing cancer to identify me. I’m not cancer. This is just a stepping stone to bigger and greater things.

As soon as they told me that, I bought a motorcycle. I started going to meets. I started drag racing, doing all the typical things that doctors are mortified of, jumping out of airplanes, going skydiving, all of those things. “Oh, I’m sick. Okay. I’m going to die anyway. So I’m going to do something crazy and reckless because it makes me feel better. It makes me feel like I’m still in control,” because that was literally the only thing I had control of.

During the treatment in the fall of 2007, they kept telling me over and over; I’m watching the scale go down every single day. I’m getting on the scale and seeing a couple of pounds come off. I’m starting to realize the gravity, but at the same time, it was pushing me further: “Hey man, you better go live while you have a chance.” So I absolutely did that.

It wasn’t until I was probably in my mid‑20s, and I got married in 2011, and I’m starting to raise my own kids, that I’m like, “Whew, boy, you were foolish. What were you doing?” It took a little while for it. I had to be a parent to see the nonsense I was doing.

Surviving cancer and dealing with crushing medical debt

I was absolutely financially devastated. That was probably the hardest part of it. There are different types of challenges, but this, being the least life‑threatening of any of them, was definitely the most difficult. Whenever you get a bill, and you see six zeros behind what your bill is, you think — “How am I going to achieve this?“

I was on Social Security and SSI at the time and am potentially going to be on disability for the rest of my life. I can’t do anything. I was really kind of hindered for a long time. My wife has always been an incredibly hard worker. She did what she could throughout the time. But back to the mental health part of it: I couldn’t see myself sitting on the couch the rest of my life.

I knew that I had to make a plan, and it had to be sustainable for my health. I couldn’t be in the sun. Certain things put you at risk for graft‑versus‑host disease. I had to make sure that I limited whatever exposure I had to protect myself the best I could.

I tried — Lord, there were some years I had four or five W‑2s — because I would try a job and, a couple of weeks in, I would be so incredibly sick that I couldn’t go on, or I saw it just wasn’t a good fit long term.

Building a new career, moving, and still paying for my cancer treatments

It was 2011, 2012. I moved my wife and me to Gatlinburg, Tennessee. Back up — I got married in 2011. That winter, I moved my wife and me to Gatlinburg. We started our own business. It was just her and I, so I didn’t really have a lot of exposure, and who knows me better than my wife? She was able to help me through whatever medical needs I had at the time. She’s always been my biggest advocate post‑treatment.

I had to learn how to do things for myself and find a niche that I could specifically exploit to benefit myself. That lasted for a little while, but when you’re looking at post‑care, you’re looking for the most beneficial and sustainable long‑term care you can get, and I couldn’t find that anywhere but in either Vanderbilt or other major centers. The Southeast has a lot of great medical facilities — there’s Atlanta, and Birmingham has one of the best long‑term care facilities in the U.S. — but Knoxville and Gatlinburg, Tennessee, just don’t have them. So I ended up having to move back home, and I got involved with Toyota.

They have lots of great manufacturing plants there, and I was able to find a career that really fits me. I’ve always been a brains‑not‑brawn sort of guy. If I had the ability and I was able to get into something where I could just type and be able to coach and teach others, it would have worked out great. But I still have not fully financially recovered from treatments. Every time you get something paid off, now you have another scan to do. Now you need these blood draws or whatever it may be. There are so many setbacks that come along post‑treatment that are involved with cancer that I just really don’t think people are prepared for.

My family was not incredibly wealthy. I had a hell of a hard‑working dad. My mom was always just the same as he was. But unless you’re one of the 1% up there, cancer is devastating. The financial responsibility that comes along with it is huge. I’ve seen several people that I’ve tried to mentor and coach who have turned down treatment that was going to be life‑saving because they couldn’t afford it, and they didn’t want to put that financial responsibility on their family if something happened. That was the really hard part of it, for sure.

Ongoing maintenance: scans, bloodwork, and specialist visits

My particular plan was: you need a PET scan every six months, you need lab draws every two months, sometimes even sooner than that, depending on whether I had a cold or something like that. I had infusions to do. I had to do plasma and blood transfusions several times.

My responsibility with my insurance is 20%. So you’re talking about a $15,000 PET scan every six months, and you have to come out of pocket 20% for that before they’ll even allow you to get the scan, and you’ve got to do that twice a year. It’s a challenge. The amount of payment plans I had — it was almost my entire check every year going toward that.

My maintenance these days is about 15,000 dollars a year — what it takes me to make sure that I’m healthy and to look for any upcoming things. I’m 17 years now from treatment, so the secondary effects are starting to show their head. I have to see a cardiologist. I have a pulmonologist. I have an endocrinologist. I have an oncologist and my primary care physician. Those bills are astronomical. If it weren’t for payment plans, it’s not sustainable, at least not in my situation.

It definitely takes some serious planning and diligence to be able to stay on top of it and find the correct facility that can work with you in those instances. There are grants out there available and stuff. There are lots of ways to pay for them, but those are very limited. It’s a hassle. It’s a huge hassle. But just the same, it’s a necessary evil. You have to stay up on that care, or it was all for naught. What did I go through that for if I’m not going to take care of myself now?

Rebuilding masculinity and purpose after cancer

To be sitting at home taking care of the kids at 22, 23, 24 years old while your wife gets up at 4 a.m. to go to work — that hurts. That is a serious thing for me. Just the same, my wife’s incredibly understanding, and we knew it wasn’t going to be a forever thing. Well, we had hoped it wasn’t going to be a forever thing.

As we started, we had to play it by ear. I still had a very low immune system, so little things got me sick, and there was no way around that. I was still in protection mode. Before I’d even gotten married, I tried to push everybody away so that nobody could be mad at me for not spending time with them or whatever. I tried to make people just leave my life. My wife wouldn’t allow that to happen. She’s as hard‑headed as I ever was, so we were a perfect match.

It took a toll on me mentally. It was the first time in my life that I had approached therapy sessions and stuff like that. “Who do I talk to about this? I can’t tell my wife that I feel, you know, less than a man right now. She just doesn’t understand. Obviously, she doesn’t have that chromosome.”

I had to fall back on perspective. One of the most valuable things that having a catastrophic illness taught me was perspective. I have to look at it through the eyes of everybody else. If I were my wife, what would I be telling me? “You need to sit yourself down. You need to take care of yourself. This is what you need to do.” That’s exactly what she was doing.

I understood to a point, but at the same time, I had to protect myself. I had to protect my identity. How do I contribute? How do I be needed? What is my purpose? What’s my role in this? The crazy thing about kids is that they give you purpose whether you want it or not. They’re going to give you something to do.

It was a serious time for reflection and a time for growth. It was a time when I leaned into my family hard. If I can’t do anything but be a dad, then I’m going to be a dad. This is what I’m going to do. It’s paid off tenfold to take that break and to be able to do that.

It’s something that you don’t really realize is happening until it’s already over. It took a while for me to understand. Once I got a job and was able to be the breadwinner again, not that that was ever a goal, and there’s nothing wrong with my wife being the breadwinner, I just wanted to feel like I was needed or like I was contributing my fair share to the relationship.

It took a long time for me to realize, “Man, you went from that to this. Look at how good you’re doing.” It was kind of my pat‑on‑the‑back situation. “You did all that, but here you are. Maybe you deserve to take that couple of years off. Maybe you deserve that break.” In hindsight, I probably should have taken a little bit longer for myself, but I was in such a hurry to get life back on track instead of just saying, “I’ve had cancer, I’ve had this, I’ve had that.” I had to stop using that as a crutch and get my mind back together and do what I knew I was capable of doing.

Survivor identity and accepting long-term risks

It’s always going to be something. You have so many risk factors that come along. All of the chemos are cardiotoxic. The radiation is incredibly harmful. So you do have stuff to be wary of.

But at the same time, whenever you’re told several times to get your affairs in order, and you haven’t even hit your second decade on this planet yet, to be sitting here talking to you now at 38 years old — yes, I’m a survivor. I’m more capable than I know. I’m more capable than I’m even aware of, if that makes sense.

Even if I don’t know I can do it now, posed with any challenge, I can do it. It may take some patience. It may take a few tears and a couple of hard conversations, but I’m capable. I’m a survivor, for sure.

How cancer in college changed my 20s and 30s

In my head, I was still certainly a baby at that time. It was way too early. “What’s happening?”

I’m on the cusp of starting my own business now, and it’s potentially going to give me that passive income that helps me better afford long‑term aftercare. It really made me more open to opportunities. It made me say yes to a lot of things that I previously probably would have stayed in my own lane on — “No, that’s not for me. I don’t even want to give that a shot.”

I’ve done jobs that people would have never imagined I would. I did everything from buying and selling scrap gold and working at a smelter to operating heavy equipment. I worked on power lines. I did everything I could do just for the sake of doing it — to say I’d done that and give myself a better view of the world around me.

I’m much more intentional now. I plan a year ahead for something that I’m going to do. For this business I have coming up, I’ve been working for the last year and working with places two states away from me, trying to understand what the market’s like in their area, and if this is going to be a viable business in their area — setting myself up for success.

Previously, it was about survival. It was about surviving the next rent payment. It was about surviving the next medical bill. It was all about survival. I did whatever job came along that was going to give me a paycheck that month or that week, and that I wasn’t going to get sick from. There was really nothing intentional about my 20s, other than loving my wife, loving my kids, and living.

It was trying to get myself from the state of mind of doctor‑doctor‑doctor to father‑father‑father, if that makes sense. So that was more of a time for a transitioning period — to understand what it was like to be an adult and not be a sick person or a burden on somebody.

It was teaching me how to have that strong work ethic and being able to say, “I’m getting up and going to work even though I don’t feel good.” You don’t feel good for years after the fact. It took me so long to get over the fatigue from the radiation and everything. There were many days when I was just, “I’m throwing in the towel. I don’t want to do this.”

But it was a time that I needed to say, “All right, this is where you’re at. We’re going to keep building on this. You did better this time. We’re going to do even better the next time.” It’s a wild story. My dad often says, “Man, you should really settle down and think about the long term.” “I don’t know if long-term is going to be here, man. I’m going to do whatever makes me happy for the moment.” It took a long time to get into the mindset of, “We have to buckle down. We need a plan.”

Now we plan for things. Again, my wife is a huge part of that. She likes to sit down and pick my brain: “What are you thinking about right now?” “I’m thinking about next March, whenever I’ve got this going on.” “That’s what I like to hear. Make that plan. Quit doing the crazy stuff.”

I would still choose this life over my old one

I’ve thought about that before, and I’ve been asked that several times. I was still in school when I was diagnosed. I had already been given a job with a railroad, and I already had my future laid out. That was the only time that I had a plan previous to illness, by the way. I had a plan.

I just don’t think I would have ever been happy doing that. I think it would have led me to a life of loneliness and isolation, and being away from people. Also, I just wasn’t the best person at the time. I was largely an angry person for no particular reason other than just — I was angry. I was a very hurtful person at the time. I even sold drugs when I was a kid.

It was a chance to wash that past away and say, “This is not who I am. This is who I choose to be.” Whether I live like a monk and have to eat rice for the rest of my life, I would choose to do this over whoever that alternative person could have ever been.

The incredible thing about having a catastrophic illness — you learn to love, whether you love yourself or you learn to love somebody else. It gave me all the tools at a very early age to have genuine connections and genuine relationships with people and to be able to see past just instant gratification.

Yeah, it would have been fun to work for the railroad, but even then, I don’t think it would have ever given me the amount of happiness that I’ve achieved today, or the quality of life that I’ve achieved today.

Thinking about the future: 26 and 36 years out

You know, I’ve never actually gone that far out, but I’m always looking forward to my second birthday. Every year on May 8th, we do a birthday cake and a small birthday party. That’s my time for celebration.

That’s a good question. I’ve never actually posed myself with 10, 20, 30 years post. But you look at survival among transplant survivors — largely, there’s not a lot of data out there for persons like me. I think the most recent I’d seen was 15 years, something to that effect, and there’s not a lot of survivorship outside of that.

It is time to really be diligent about my aftercare and to start looking for the future. What does 26 years post‑treatment look like? Those are things that do come across my mind. I’ve never actually put a time frame on it, but 26 years to me looks much brighter than today.

This is my first start with actually talking about my illness and putting it on a public platform and telling people that there is hope. Regardless of what happens, there’s always hope.

I really don’t mind whatever happens, whether my business is successful or not. It’s something that I tried, and if I fail, and I learned how not to start a business, I’m going to do it better the next time I do it. Same thing with my care or my aftercare. If there is a potential for a secondary cancer, or if heart disease comes along from any of the treatments I received, I have a plan for that, too.

I’ve already spoken with doctors about it. I do have a plan in place for all of those. At least now I have the maturity about myself and the previous experience that I’ll approach that whenever it comes along. But until then, I can’t worry about that because I have too many days in front of me to say, “In ten years, I might have heart failure.” I’ve got thousands of days in between now and then to worry about that.

Becoming a grandfather and living a life I never expected to have

I have my first grandchild on the way in March. I’m incredibly proud of my daughter. I’ve got a 25‑ and a 20‑year‑old, but my daughter’s having her first child in March. We learned about it back in September.

I’m actually in Biloxi, Mississippi, right now, which was always a bucket list item. I wanted to come and live by the beach and say that I lived by the beach, and I’ve done that. The prospect of having a family once was incredibly dim. I was told again, “Get your affairs in order.” I never thought I would even get a chance to be married.

To sit here on the other side now, being married since 2011 and being with my wife for almost 19 years — I met her about four months after I was diagnosed. She was with me through all the treatments. I met my stepchildren — by all accounts, they’re my kids. I met them at the time, and there was a time when I didn’t think I would ever see them again.

To see what they’ve become and see the incredible young adults they’ve become; both of them are so hard‑working, really hard‑headed like me. It’s like looking through a keyhole. You get a very small view of things, but you get a very important view of things.

That, to me, is all my future consists of: taking care of my family and being a part of my family. Hopefully, my kids look at me like I look at my dad. He’s the glowing figure in the distance, but he’s there.

I told my daughter this morning, “I am so nervous to do this interview. I’m going to bring up stuff that’s really going to hurt my feelings. But at the same time, it’s my responsibility to tell the story, to put it out there.”

To have your kids tell you how proud they are of you — that’s incredible. I’m so fortunate to be a part of a family that adores me as much as I adore them. I can’t wait for the future. Nobody wants to rush past all the todays because you have to be present here. But every day I can put in between myself and a diagnosis or anything that deals with cancer in general: that’s a victory.

I can’t wait to see what the future brings — curveballs or straight‑up strikeouts. I’m here for it all.

My final reflections and advice for other patients

Have a sense of humor whenever you’re going through it. It’s incredibly valuable. You will understand things that your body can do that you never would have realized. You, at some point, will lose all dignity. People will see you at your absolute worst, but they’re trained for those situations.

Have a sense of humor about it. Don’t be too hard on yourself. I was incredibly vain as a teenager. Hair was everything for me. I had mohawks and colored hair, and I would spend an hour in the mirror fixing myself up. Do you see this? It’s a rough time of year for bald people, I’m just going to tell you that.

Have a sense of humor. The people around you would much rather make you laugh than see you cry. But also be responsible. In retrospect, if I could have changed something, I wish I had listened more closely to my doctors and taken some of that advice. But also, you have to live your life, right?

I’ve always had a knack for making people laugh. That’s just who I am. If I can brighten someone’s day, it makes me feel a little bit better. So have that sense of humor, because there are going to be times where you’re going to be like, “Oh my God, I can’t do this.” You can. It’s going to be unpleasant, but you absolutely can.

Thank you for sharing your story, Tristan!

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Stage 4 Stomach Cancer: Lisa Balances Cancer and Being a Mom

Post author By Chris Sanchez
Post date January 26, 2026
No Comments on Stage 4 Stomach Cancer: Lisa Balances Cancer and Being a Mom

January 26, 2026

Living With Stage 4 Stomach Cancer: How Lisa Balances Cancer and Life as a Mother

When Lisa had trouble swallowing a hamburger on her 35th birthday, she had no idea it would be the beginning of a stage 4 stomach cancer experience that would touch every part of her life. What started as difficulty swallowing and severe acid reflux quickly escalated to an endoscopy that revealed two tumors and a biopsy report labeled malignant. In January 2021, at age 35, Lisa was told she had stage 4 stomach cancer, with disease in distant lymph nodes, and suddenly the milestones she imagined, like visits to children’s museums, kindergarten drop-offs, and 10th‑anniversary trips, felt painfully out of reach.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

From the start, Lisa trusted her intuition and insisted that something was wrong. With the support of a proactive primary care clinician, a responsive GI specialist, and an oncology team willing to think outside the box, she pursued aggressive stomach cancer treatment: chemotherapy, immunotherapy, radiation, and, eventually, a total gastrectomy. She describes trying to prepare mentally for losing her stomach as “a crazy thing,” especially the moment surgery was initially cancelled just three days before it was supposed to happen, because imaging showed progression. Still, she and her husband weighed the pros and cons and fought to reach the point where stomach removal became possible.

For Lisa, living without a stomach has meant relearning how to eat: tiny, frequent meals and careful pacing, knowing that overeating or too much sugar can bring her to the point that she needs to lie down. Her first year after surgery was especially hard, yet she emphasizes that it is possible to live without a stomach and that she now eats and drinks almost anything in moderation. Maintenance immunotherapy every five weeks, ongoing scans, and Signatera blood tests are part of her “new normal” as she focuses on staying stable rather than chasing the word “cured.”

Five years into her stage 4 stomach cancer experience, Lisa has transformed from a terrified young mom who doubted she’d see her son start kindergarten into a powerful advocate. She co‑founded the Strides Against Stomach Cancer Walk in Wisconsin, travels to Capitol Hill for Advocacy Day, and proudly wears periwinkle, the stomach cancer awareness color, with her family. She urges others to trust your body, find your support system, ask for second opinions when needed, and keep living: one milestone, one walk, one day at a time.

Lisa’s video and the transcript of her interview below provide more details about her story.

Trusting your own body and speaking up when something feels “off” can be lifesaving, especially when early stomach cancer symptoms look like common reflux or indigestion
Patients deserve to ask questions, get second opinions, and seek care teams that truly listen. No one should feel guilty for advocating for their own health
Aggressive treatment plans, including total gastrectomy, can sometimes open options even in stage 4 stomach cancer, but they require weighing risks and benefits based on each person’s goals
Life without a stomach is challenging but possible; with time, support, and trial and error, many people, like Lisa, learn to enjoy food again in smaller portions and more mindful ways
Lisa’s transformation from “just trying to survive” to leading fundraising walks and traveling to Advocacy Day shows how living with stage 4 stomach cancer can evolve into purpose‑driven advocacy

Name: Lisa B.
Age at Diagnosis:
- 35
Diagnosis:
- Stomach Cancer
Staging:
- Stage 4
Symptoms:
- Trouble swallowing
- Acid reflux
Treatments:
- Chemotherapy
- Immunotherapy
- Surgery: total gastrectomy
- 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’m Lisa

I was diagnosed in January 2021 with stage 4 stomach cancer, and I am from Milwaukee, Wisconsin.

A few of my passions: Our family really likes to stay really busy. We really like to travel. We like to see a lot of different new states. We have a state map that we scratch off when we go to a state together, which is really fun, just to help us go to new and exciting places.

We definitely like to travel. We’re the type of people who, when we’re on vacation, we are running. We’re seeing all the sights because we don’t know if we’re going to get back there. We really try to cram in as much stuff as possible. We’re not a huge lounging-around-vacation type of family.

In everyday life, it’s kind of the same thing. My son is seven right now, and we stay very busy with that. He’s really into sports. Then we each have extracurricular activities as well, so just managing all of that. I’m really into reading books and my book club, and just doing a lot of stuff together as a family and with friends.

Parenting with stage 4 stomach cancer

My son was two when I was originally diagnosed, so he’s kind of not known anything else. From the get‑go, a two‑year‑old doesn’t really understand what’s happening, but we really try to be as open as possible with him.

We’ve now done two fundraising walks, and I feel like that’s kind of a nice reminder. Even if I look okay all the time, it’s a reminder that we’re doing this because Mama still has stomach cancer. He knows when I go to the doctor — I go to the doctor about every five weeks at this point. So it’s just kind of a constant reminder of, nope, I still have stomach cancer. I am still sick. I’m still fighting this.

It’s something he’s just grown up with. To him, it’s very common. Also, just funny things: he’ll tell people, “Oh, yeah, my mom doesn’t have a stomach.” People are like, “Wait, what are you talking about?” They think he’s just saying crazy kid stuff, but he knows. He knows a lot of different things about stomach cancer that a seven‑year‑old really shouldn’t have to know.

I think when I was originally diagnosed with stage 4, it was really shocking and not what we expected. We have always been open with our son because we didn’t think we would be here at this point. We thought we’d only have a few years together.

January will be five years since I was diagnosed. We never thought I’d make it there, so I think it was really important from the start that we had to be open with him. We had to share that, just to be realistic.

Every once in a while, he gets really nervous. He’ll just say, “Well, I don’t want to die.” And I’m like, “Oh, honey, you don’t have to worry about that.” I think it has really forced him, as a young child, to have to think about those things.

He’s been really sweet, even through treatment. Every treatment has been kind of different in how it affects me, but there are some days I really can’t get out of bed. I’m just lying there, and he’ll be really sweet and come in. He’ll be like, “Good night, Mama,” and he just knows he needs to be quiet, and I’m not able to help with things and stuff.

So for him to pick up on that is awesome.

My first symptoms

In 2020, I was trying to get healthy, lose weight. I was working out a lot. I was eating healthier. Then it was on my 35th birthday in October 2020. I was eating a hamburger, and I had trouble swallowing it, which I had never experienced before. It got really stuck in my throat, and I was like, “Oh, that’s very weird.”

After that, I had about a week of really bad acid reflux, and I went to the doctor right away because, again, that’s not something I had ever had before. My primary care doctor really jumped on it right away, which was awesome. She got a lot of testing done. I started on Prilosec to try and see if that would help. It did help a little bit, but after two weeks, it still wasn’t back to normal.

I knew what my body normally was, and it wasn’t back to that yet. So we kept pushing for more testing. I did a swallow test. They thought I might have an ulcer. Ultimately, it was New Year’s Eve 2020. I had an endoscopy done.

The endoscopy changed everything

My husband didn’t come in with me or anything because this was in the height of COVID, but they called him and said, “We actually do need you to come in.” Then they told us they found two tumors in my stomach and that they had biopsied those.

It was not the news we were expecting to hear. It was not a routine endoscopy but something way worse than what we thought it would be.

After that, it felt like so long — it felt like weeks — but it was truly, I think, four days. We waited to get a call, and I received a call from the GI doctor that said the biopsies came back and they were malignant, which just kind of shattered us.

We were lucky enough to be working from home at that time because it was during COVID. That was one benefit — that we were there, my husband and I, to get the news together, process it together, have time to step away, which was helpful.

Everything moved really quickly after that: additional testing, meeting with doctors and oncologists, and setting me up for what the next steps were.

The importance of advocating for yourself

I feel like I’ve been really lucky along the way that all of my doctors have really taken anything I’ve said seriously. But I think it comes back to, you know your body the best. I knew this was something that was not right, because they easily could have brushed this off and just said, “Oh, that’s just getting older. That’s just being a woman.”

I knew it wasn’t that because I had never experienced it before. I was very lucky to have doctors who really did support me along the way. My primary care doctor and even my GI doctor really got me hooked up with an oncologist right away because it’s a scary thing, getting a cancer diagnosis. We wanted to jump on it.

He suggested one person. It really wasn’t a right fit for me. I did find a different oncologist. But even his saying, “I know someone who can get you in right away,” was very helpful from the start, and I’ve been really blessed with my care team at the cancer center I go to.

They have been so forward‑thinking the entire time because I was young. I was 35 when I was diagnosed. Basically, they were like, “You’re young and otherwise healthy. What can we do that’s maybe outside the box and give you the greatest chance?”

Processing the diagnosis as a mom

That’s definitely the toughest part — thinking back to the beginning and looking through old pictures. It reminds you because it becomes your new norm, just living with cancer. Looking back at pictures, I’m like, “Oh, wow, he was so young.”

The biggest thing we always laugh about is that I always said, “I’m never even going to be able to take my son to a children’s museum.” This was January 2021. Things were starting to open back up, but very slowly. Then we got hit with this diagnosis, and we didn’t want to put me at risk either. So I was like, “I’m never going to experience going to a children’s museum, going on vacation, seeing him get into kindergarten” — things like that.

So it was really tough from the start.

What we were told about my prognosis

They actually didn’t put a number on it. On the back end, my husband and I were definitely looking at statistics. Back in the day, five years ago, for stage 4, it was only about 4%. That has changed since then, but seeing that number, we could read that ourselves: okay, this is not a good chance.

Basically, they said, “You need to be prepared, but also don’t stop living either. There are a lot of different treatments out there and different things we can try.”

Research is always changing, which I feel I’ve really benefited from in the last five years. Things have advanced so much that I’ve been lucky to be able to do some of those treatments.

How we kept living

We did it in all the ways that we could, for sure. We try to — even now, whenever I’m feeling good, which is more often than not now compared to when I started. Whenever I’d be feeling up to it, we were always trying to do things together as a family, going to different things.

It’s nice that COVID kind of went away, and we could go and do more things. I was able to go to the children’s museum with my son. One of the big things when my husband and I got married was that we always wanted to go to Hawaii for our 10th anniversary. That was almost three years ago now, two and a half years ago, and we were able to do that.

When I was diagnosed, we never thought there was any way we’d be able to do that. We’ve gone on a family Disney trip. We’ve traveled all over and gotten to see a lot of great milestones with friends and family that we never thought would be possible.

We don’t stop, for sure. We are living it up as much as we possibly can because we truly don’t know. Things can change in an instant. A treatment can stop working, and I might be running out of options. We take that wholeheartedly, and we try and make the most of it.

How I balance everything

I rarely sleep. I feel like we were always a couple that burned it at both ends. Especially when we had our son, we wanted time after he went to bed to do things together or watch TV, play video games — things like that. That really has not changed.

We push it at both ends to get the most out of the time we have together, for sure. It’s still not enough time in the day. It’s very hard to balance.

I work full-time. My husband works full-time. Our son is in every sport imaginable, so we’re always running between something. Somehow, we just make it work, and we prioritize the things that are really important to us.

What my treatment looked like

When I was first diagnosed, they found out that I also had a pulmonary embolism, and I was anemic right from the start. To start my treatment journey, I got my port placed really quickly. I received a blood transfusion. I received an iron transfusion. Then I started on a three‑drug chemo.

I did nine rounds of that. Our ultimate goal, even though I was stage 4, was to get a total gastrectomy, because my oncologist thought it would give me the best chance. After nine rounds, I had a great response. Everything was going well.

Then I did a CT scan or PET scan right before, and it showed that the cancer had progressed because we had to take a break from chemo. It was three days before my total gastrectomy surgery, and they had to cancel it, which was honestly one of the most difficult things.

Trying to prepare yourself to get a total gastrectomy is a crazy thing, because I didn’t know you could live without a stomach. I was getting excited, like, “This is going to be really good for me to survive.” Then, for that to be taken off the table was really tough. That was about July 2021. They said, “Okay, we’re taking that off the table for now.”

We started back on a two‑drug chemo with immunotherapy as well. They saw really great success with that. I did eight additional rounds. In November 2021, I was able to get my stomach removed because I had a really good response. That was in November.

After that, I started just immunotherapy, which I was on for about a year and a half. That treatment was keeping me stable. I was never cancer‑free, but I was always looking to stay stable. That worked for a long time.

I had to get off of that and took a little break. I did a full course of radiation to the abdominal area because they saw a few things they didn’t like cancer‑wise. I did a full course of radiation. Then I think it was the current treatment I’m on now.

Just before Thanksgiving, I received my 19th round of a new immunotherapy. It’s different from the one I was originally on, and that has been keeping me stable for almost two years now, which has been going really well.

Why we decided on an aggressive treatment

Yeah, it’s kind of funny because I feel like sometimes I can just name off, “Oh, yeah, I did chemo and immunotherapy and radiation,” and it kind of loses how actually crazy that is and how many rounds I did. It has become common knowledge to me now. It is crazy when I name off all the things I’ve been through.

It was really important to me from the start to have an oncology team that was in my corner and really wanted me to get the best results possible. A lot of stage 4 stomach cancer patients are not able to get their stomach removed because it has already spread, and it’s just not possible.

I’m stage 4 because it spread to my distant lymph nodes. Their thought process was: let’s get the majority of the cancer out that’s in that stomach/abdomen region, and then work on treating those distant lymph nodes. You can’t really go in and hunt and peck and take out all of the lymph nodes because, one, they’re all over your body, and lymph nodes fluctuate even for normal people when they’re sick. That’s not possible either.

So the plan from the start was to keep those in check. My husband and I were all for it. We wanted to give me the best chance possible.

I think the hardest thing to come to terms with was the total gastrectomy. It’s such a shocking thing. You don’t know: is this going to work for me? It’s a huge surgery, a big recovery. Maybe it knocks me down too much, and I’m not able to recover enough to receive treatment after that.

But the pros outweighed the cons when we were looking at it, and that’s why we really were trying to push for that as well.

Preparing for my stomach removal surgery

The biggest way I prepared for my total gastrectomy was connecting with other people who had gone through this. I’ve been lucky enough to connect with a lot of people through a few advocacy groups. I needed to know: What did you bring to the hospital? What do I need to bring? What do I need to prepare for? How is this going to go while I’m in the hospital? What tactical things are going to happen?

I’m such a planner, and I needed that. I talked with a lot of different people and got great feedback. They were like, “Here’s a list of things to try,” like slowly eating afterward and what worked for them.

Right afterward, I received a feeding tube when I got my total gastrectomy done. Some patients do, some don’t. While I hated having it every single minute, it was a really nice safety net, just in case I wasn’t eating enough. The sheer volume of calories I could consume was so much less.

I had to constantly be eating, like every hour — “Okay, I’ve got to take two bites of yogurt, and I’ve got to drink my protein water,” things like that. So again, while I hated my feeding tube because it was such an annoyance, it was a really nice safety net to ease me back into it and not have me push it and maybe have complications.

Living without a stomach

The easiest way is that they cut out your stomach, and your esophagus is basically attached to your intestines. I really just don’t have that pouch where your food digests and sits for a bit. Things move more quickly through me, and I don’t absorb nutrients the same way. There are additional supplements you have to take when you don’t have a stomach.

Honestly, for me, the first year was really tough — learning to eat again and the amount. For me, going out and having food with friends has always been a big part of my life. I’ll go out and start eating and talking and forget about it, and then I overeat. It was something I probably did before, too, but now it’s even worse when I don’t have room for that. I know right away: “Oh, I really did push it.” Then I kind of have to go take a break or lie down a little bit, which is difficult.

It is possible to live without a stomach, which, again, I didn’t know before this whole experience. That first year was really tough, but now I’m really back to, I can eat and drink anything I want in moderation, I would say. Sugar is probably the number one thing that’s really hard on a lot of people. I love sweets, so I try and push it sometimes, but I know sometimes I’m going to have to pay the price for that.

Everything in moderation, just like everyone else, but just a little bit smaller.

Why this surgery mattered even at Stage 4

It was really big because, as I said, a lot of stage 4 stomach cancer patients are not able to get their stomachs removed. For me to have this opportunity felt like something I really needed to try and get to.

We didn’t know if it was going to work, if there would be complications, or if the recovery would be too hard and my body would be too weak to receive treatment after that.

We didn’t know those things, but we took an educated chance and weighed our pros and cons to determine that this was really the right decision.

Helping people understand my diagnosis

I think at the beginning, there was so much support around my diagnosis and helping with things. After a while, people kind of forget. They just assume that you look great and you’re doing well, and they assume you’re cancer‑free, which is something I deal with all the time.

Especially in my job, new people will start, and you never know the right time to drop that bomb on people because it’s not the first thing I want them to know. There were people I had worked with for quite some time, and this past November, I stood up in front of everyone to let them know I had this walk happening and that I was a stage 4 stomach cancer patient. Some people were shocked. They were like, “I had no clue, and I work with you daily. I don’t understand.”

I think it’s encouraging and good that people don’t notice it, but also, you want people to understand that it is still a hardship, and going through treatment is really tough. I’m lucky I don’t have a ton of side effects, but I honestly probably have more side effects from not having a stomach — overeating, not eating enough, eating too fast — things that will put me down for the count.

It’s hard when people don’t realize it’s a daily thing. There’s not one day that goes by that I don’t remember I have stage 4 stomach cancer because of some random symptom or pain that rears its ugly head.

What I’m currently doing

I’m on immunotherapy right now, and I go every five weeks to receive that, which is nice. It’s not very disruptive to my schedule. It’s just one Wednesday every five weeks, and then I’m back to work the next day, which is great. I’m pretty lucky that I don’t have a lot of side effects at this point, and the ones I do have are really manageable.

It’s a full day that I spend at the cancer center. I go in, I get labs. They check all of my levels to make sure it’s okay for me to receive this treatment. It’s a good double check to see where things are. I go to that, I meet with the doctor, and he reviews everything. If there’s a CT scan — I get those every three months — we talk through anything new that popped up.

I also get a Signatera test, just to see where my levels are. A lot of people get Signatera, and they want their number to be zero. Mine has never been zero because I’ve always had cancer in my body, but we make sure it’s still a lower number. If that number starts to spike, we want to jump on it.

I’m lucky that I have a port, thank goodness, because my veins are so tired and small from being poked so many times. I got a port right away when I was diagnosed. This is actually my second port; I had to get it changed out. I go to the hospital and receive immunotherapy for over an hour. It’s pretty short, the treatment itself. Then I’m pretty much back to normal after that. You would never know that I received treatment that day.

I’m currently on maintenance immunotherapy. Our goal is really just to keep me stable for as long as possible. I’ll continue to do that until either the side effects don’t work for me or the cancer progresses and we need to look at other options.

Balancing a “normal” life

There’s not a lot of balance when you’re a mom, for sure. I’ve got to jump back in, and I need to parent right away — picking up my son, doing bedtime, doing laundry, doing the dishes, doing all those things. It never stops.

It gets exhausting, for sure. My husband and I would agree: our house is never in the state that we once would want it to be and have always wanted it to be. But it’s the trade‑offs. You do have to have balance, and the dishes can wait till tomorrow, and my house can look messy for a day, and it’s fine.

Sometimes it gets a little too overwhelming. Between treatment and family life and work and everything, sometimes it’s too much. We’ve kind of — as much as we don’t like it — said, “You know what? The house can wait, or that other thing can wait, and it’s fine.”

How much I’ve learned in these last five years

Oh, I’ve learned so much over the last five years. It’s crazy. So much about cancer in general — just all the jargon and language you need to learn when you’re in the cancer world — has been a lot.

Also, I had so many mentors when I first started this experience, looking to them as inspirational stories because I thought there was no way I was going to get through this. Talking to some of those people, who have become some of my closest friends, was so inspiring. I was like, “Well, they can do it. They live without a stomach. It can be done.”

Now I’ve shifted to really wanting to give back and pay it forward.

Starting the Strides Against Stomach Cancer Walk in Wisconsin

I plan events in my job. So in 2024, one of my friends — she’s always wanted to do some kind of walk to raise money for stomach cancer because there’s really not anything local in the area. It’s a lesser-talked-about form of cancer, so we don’t have anything already set up. She said, “Let’s just start a walk,” and I was like, “I don’t think you know exactly what that means, but sure, let’s do it.”

In 2024, we started the Strides Against Stomach Cancer walk in Wisconsin. We had a pretty minimal goal. We wanted to get 100 people — everyone bring your friends and family — and raise $10,000 to support stomach cancer patients. We were blown away. We had 200 people come that first year and raised over $20,000.

We learned so much along the way, even with that. While I do events at a university, this is very different from doing a big fundraising walk, which I had never really done. We learned a lot along the way.

This past year, in 2025, we had our second year, and again, I was blown away. We had over 300 people and raised over $30,000. The support and awareness we’re bringing to stomach cancer in the local area has been so important to me.

One exciting thing this year: last year, five stomach cancer survivors came to the walk, and I knew every single one. I had talked to them all before. This year, we actually had three new‑to‑me stomach cancer patients register, which was awesome.

It’s really important to me. I want to connect with people and share my story and help them along the way if I can — just to share that not every treatment will work for everyone, but maybe there’s another option someone hasn’t thought about. I’m looking to connect with other stomach cancer patients locally and across the country.

It’s been really special to start some of those relationships and find the weird coincidences of, “Oh, yeah, my aunt passed away from stomach cancer.” Finding those little connections has been really special. When someone says they know someone with stomach cancer, I’m like, “Tell me everything.” I don’t know many people who have it.

I feel like I’ve switched gears now, and I really want to pay it forward and keep advocating, obviously for myself, but for the full stomach cancer community as well.

Why raising awareness matters to me

It’s really important to me, especially for current patients — sharing my story with them — but also bringing awareness to stomach cancer. It’s one of the most deadly cancers and definitely one of the most underfunded.

We go to Advocacy Day with an organization. We go to the Hill every year to ask for more funding for research, just to keep pushing that. I feel like treatment options are getting better and better, but they really need those research funds.

I don’t think people know about that because stomach cancer is a less talked‑about cancer. Just bringing awareness to it is definitely something that I’m looking to do.

It’s definitely a family effort, for sure. This past year, my husband was lucky enough to get a media spot to talk about the walk, and he’s so passionate about it and being such a champion for me as well.

It has become our personality, I would say. Every single day, you’ll probably catch one of us in a periwinkle color, because that’s the color for stomach cancer. One of us is wearing a walk shirt or periwinkle, or we’re talking about it. It is our lives, for sure, and we’re very passionate about it because it is so personal.

I truly never thought when I was diagnosed that I would be where I am right now. Honestly, from the beginning, my husband found an organization online and was like, “Hey, you can get a mentor through them.” At the beginning, I was not interested. I was just trying to survive. That was really what I was trying to do.

It was a slow process for me — reaching out to people and connecting with them. Then it was, okay, I’m going to participate in an online forum or an online support group. Then we decided we were going to go to D.C. and participate in Advocacy Day. It has been a slow build. I was really hesitant at first.

Now, as I said, it has become our personality. That is just what we are always talking about or doing because we are so passionate about it. I never once would have thought I would be where I am right now, five years later.

What I want others to know

I think a message I would leave with people is that cancer is a tough, tough experience. You need to find your support system, whether that be family, friends, or online. I’ve found some really deep, amazing connections with friends online. We’re always like, this is the best group to be in, but the worst group to be in because we all are affected by cancer.

Find your support system. Reach out. Make sure you’re talking to people. Make sure you’re advocating for yourself — that’s probably the biggest one. If you don’t like what your oncologist is saying or you don’t agree with them, get a second opinion. No one’s going to be offended if you get a second opinion on this because it is a rare cancer.

So definitely push for some of those things and find your support system.

I think the biggest thing for me — there were so many milestones I never thought I would reach. I uploaded a lot of photos that reflect it as well.

I talked about it at the walk this year. I never thought I would see my son going to kindergarten. He’s in first grade now. My sister told me, I think it was a year after I was diagnosed, she got engaged. They were going to have a long engagement, and I was like, “That is not good for me. I want to see you get married.” I was able to see her get married last year, which was super special.

This past October, I celebrated my 40th birthday with a bunch of friends in Las Vegas, which was so much fun. In January, it will be five years since I was diagnosed. All those big milestones are very meaningful for our family, for sure.

Thank you for sharing your story, Lisa!

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Finding Strength: Sarah’s Rectal Cancer Diagnosis

Post author By Chris Sanchez
Post date January 24, 2026
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January 24, 2026

From Shock to Strength: Sarah’s Stage 2A Rectal Cancer Diagnosis and Recovery

Sarah, a 39-year-old mother of two from Boca Raton, Florida, was blindsided by a rectal cancer diagnosis in early 2025. Because of her active lifestyle and commitment to health and fitness, Sarah’s symptom, occasional bleeding, was easy to dismiss. She had always been athletic, competitive, and deeply involved in her children’s lives, making the diagnosis feel surreal. When a colonoscopy revealed a large tumor, Sarah was initially told she had stage 1 rectal cancer. However, after surgery in April, her diagnosis was updated to stage 2A, reflecting the tumor’s aggressive characteristics.

Interviewed by: Carly Knowlton
Edited by: Chris Sanchez

Sarah’s rectal cancer experience highlights the importance of listening to your body, even when symptoms seem minor. Her story began with uncertainty and disbelief, but she quickly found strength in her support system and proactive medical team. After surgery, she faced a challenging six months of chemotherapy, balancing treatment with parenting and maintaining her identity.

Throughout her treatment, Sarah remained open about her struggles and triumphs, from managing side effects to helping her children understand her diagnosis. She shares practical advice for patients, including the importance of undergoing colonoscopies, managing side effects effectively, and finding joy in everyday moments. Sarah’s experience is a reminder that rectal cancer can affect anyone, regardless of age or health status, and that early detection and a strong support network are crucial for recovery.

Watch Sarah’s video and read through her edited interview transcript below to learn more about her story.

Listen to your body. Even minor symptoms, such as bleeding or constipation, can signal something serious. Don’t dismiss persistent changes
Seek expert care. Sarah’s proactive medical team, including a tumor board, ensured she received the best possible treatment plan
Self-advocacy matters. Sarah encourages patients to trust their instincts and ask questions, even if they feel healthy or young
Support systems are vital. Family, friends, and medical professionals played a crucial role in Sarah’s recovery
Stay positive and resilient. A positive mindset helped Sarah navigate the emotional and physical challenges of treatment

Name: Sarah G.
Age at Diagnosis:
- 38
Diagnosis:
- Rectal Cancer
Staging:
- Stage 2A
Mutation:
- PIK3CA
Symptom:
- Minor and inconsistent rectal bleeding
Treatments:
- Surgery: low anterior resection (LAR) surgery
- Chemotherapy: FOLFOX

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.

Transcript of Briana’s Interview

My name is Sarah
About me and my passions
My initial symptoms
How I discovered that I had rectal cancer
Initial diagnosis to surgery planning
My surgery experience and recovery
Follow-up and pathology
My emotional response to my treatment plan
Telling my kids
Chemo: my plan and experience
Chemo delivery and my daily life
My hardest moments
Balancing parenting and cancer
Ringing the bell and finishing treatment
My life after chemo
My advice to viewers

My name is Sarah

I am now 39 years old. I live in Boca Raton, Florida, and on January 31st of this year, 2025, I had a colonoscopy where a tumor was discovered. I was officially diagnosed in February with what was believed to be stage 1 rectal cancer. But after surgery in April, it was stage 2 rectal cancer.

About me and my passions

My husband and I have two kids. My oldest is ten. My youngest is five. We’re big into just going out, exploring, having fun, traveling. My daughter and I do a lot of 5Ks together. She’s so into it now. We don’t quite run them because I have shin splints and she’s not a runner, but she’s starting to run them, and it’s really cute to see.

My initial symptoms

My symptoms started — well, at least started enough for me to pay attention — when I was pregnant with my son. He’s five now, so this was five and a half years ago. Towards the end of my pregnancy, I had what I chalked up to just basic pregnancy constipation and hemorrhoids. I didn’t really think much of it, but I remember distinctly towards the very end — like, two weeks before my scheduled C-section — I had an episode of bleeding.

At the time, I didn’t really know where the blood was coming from, and I automatically assumed it was coming from the baby. So I went to the ER, and they did a full workup, and the doctor said, “Oh no, it’s just hemorrhoids or whatever.” I just kind of left it at that, had the baby, and went on with life. I never really had a recurrence of those symptoms to be consistent or to be fearful of anything.

That was the craziest thing for me — I didn’t have any symptoms, really. When I did, when I had episodes of bleeding, it would come with constipation and would happen maybe once every two weeks, then once a month, then once every two months. It wasn’t consistent, so it wasn’t troublesome or scary for me at the time.

How I discovered that I had rectal cancer

So the symptoms actually did pick up in 2024. They weren’t scary. I didn’t have any other symptoms other than what felt like constipation with bleeding. I did have a little pain on the right side when I would digest food sometimes. I thought, “What is that?” I didn’t have an appendix, so I knew it wasn’t that.

I thought, “I have really good insurance. Let me just make an appointment with a GI and see what he has to say — maybe it’s fiber supplements or something else.” My friend is a physician and recommended a good GI. I got in with his physician’s assistant, who’s actually my age and very proactive. She said, “It sounds to me like it’s just a little constipation, but I’m not okay with not sending you away with a colonoscopy script.”

My appointment with her was in November. I had my colonoscopy in January.

Initial diagnosis to surgery planning

At the colonoscopy, there was a polyp described at the time, but it was 40mm, or four centimeters, like a grape. That’s what was protruding into my colon and causing the bleeding. After the official pathology, it was carcinoma. Then I met with the oncologist. Before surgery, based on the scope and initial CT scans, they said it was a stage one tumor, but after surgery, it was updated to stage two.

My pathology took two weeks to come back because my doctor sent it off to the Cleveland Clinic for testing. He kept in touch with me the whole time, which was so nice. Dr. Stern — shout out to him — was very proactive. The second he got the results, he called me at 8 p.m. and immediately got me in with a colorectal surgeon and an oncologist. The next morning, both called to set up appointments. The oncologist ended up taking my case to the tumor board, which was great — they all evaluate the best course of treatment.

Thanks to a friend who was a radiologic technician, I got in right away for scans. The best course of treatment was determined to be removing the tumor first, not chemo or radiation right away.

My surgery experience and recovery

After the initial tumor board meeting, my oncologist called regarding lung nodules found during my CT scan. With colon cancer, the lungs or liver are usual sites for spread. The nodules were small, so I saw a pulmonologist (also a friend), who got me in immediately and spent two hours exploring and taking biopsies. The pathology came back benign.

Once cleared, I proceeded with surgery scheduled for April 1st, 2025. Meeting my surgeon for the first time, I felt overwhelmed. The only previous surgeries I had were an emergency appendectomy and my C-sections. This was going to be an eight-hour surgery with multiple specialists involved, including urology for stents. I would need a temporary ileostomy. Processing all this was hard; my husband and I sat in silence for hours afterward. Initially, I hoped to avoid such extensive surgery, but less invasive options carried the risk of microscopic spread. Surgery was the safest choice.

I packed a full suitcase for the hospital, expecting a 5–7 day stay. I was fully prepared, but thanks to my active and healthy lifestyle, my surgeon discharged me the day after my surgery, which is not typical. I was up and walking; the ileostomy was manageable with the nurse’s help.

Follow-up and pathology

My surgery was on April 1st, a Tuesday; I was discharged on Wednesday. By Friday, my surgeon got the pathology back: Stage 2, no lymph nodes involved (24 taken).

The tumor had high-risk characteristics: high tumor budding, lymphovascular invasion, and perineural involvement. It was staged as a T3 tumor.

Due to these factors and my age (38), my oncologist recommended aggressive treatment. Chemo was the next step.

My emotional response to my treatment plan

I remember going to that oncologist appointment — I call him the Grim Reaper, because I always go in happy, expecting good news, and he brings new challenges. I went in not thinking I would need chemo, and left devastated.

I called work and said, “I can’t come in today,” and cried for hours. Afterward, I accepted it — I had to get through six months of chemo.

Telling my kids

The little one didn’t understand much — he thought skeletons and X-rays were cool. My daughter, older, was upset because I wouldn’t be home the same day as with other surgeries. When she saw me home, well, she was okay.

We had a “cancer” talk; for my daughter, I called it “bad cells” and explained we had to get rid of them. I still have a hard time saying the word “cancer,” even on medical forms.

Chemo: my plan and experience

After meeting the oncologist, I was set to do 12 rounds of FOLFOX. The tumor board did not see the need for radiation, thankfully. Radiation can be brutal. I received oxaliplatin and 5-FU, which was administered via a pump I brought home for 48 hours. My kids put googly eyes on the pump and called it a pineapple (it looked like a lemon).

I functioned at about 80% of my full capacity. Side effects included facial flushing, hair thinning (lost about 80% of my thickness), fatigue, mild nausea, and neuropathy. The oxaliplatin caused cold sensitivity in my throat and lingering neuropathy in my hands and feet. My tear duct in one eye constantly produced tears and mucus. Oxaliplatin was stopped after the seventh round due to a good response.

Chemo began in May, right after surgery and chest port placement April 23rd, continuing until October 13th for a total of six months.

Chemo delivery and my daily life

I’m part of the Baptist Health network in Boca Raton. The cancer institute has a chemo infusion floor where I received treatment. With oxaliplatin, I sat for 4–5 hours, then wore the pump home for 48 hours. All of my treatments were outpatient.

I was in the gym with my pump on (being careful not to lift or raise my heart rate too much). The nurse advised that if you elevate your heart rate too much, the drug can pump too quickly and cause side effects.

My hardest moments

Honestly, the beginning — before pathology, staging, or surgery — was the hardest. Not knowing was awful. So many opinions and messages from friends and family made things more stressful. Too many people were getting involved, many with unrelated advice.

My husband tried to be supportive by talking to others, but it resulted in unhelpful feedback and pressure.

Balancing parenting and cancer

I think the hardest thing was being a parent with young kids during diagnosis. You start picturing them growing up without you — it’s terrifying.

My life did not stop; everyone was shocked by my ability to maintain normalcy for my kids and myself. I was still social, still wore a bikini with my ostomy.

Ringing the bell and finishing treatment

I wasn’t expecting to get so emotional when ringing the bell. At the end, it hit me that I had beaten cancer. That relief—it was one of the top five moments of my life.

We have such a great support system. My husband’s friends showed up with flowers and gifts, and the medical staff were all genuinely happy for me.

My life after chemo

Things are slowly returning to normal. Little hairs are growing back, and I finally had my port removed, a huge milestone — my oncologist trusted this part was over. I had my ileostomy reversed and had a few weeks with no medical care. Technically, though, I still had follow-up procedures.

I’m still recovering, but looking forward to real normalcy: beautiful hair, simple pleasures like facials and getting nails done. I’ll never complain about my hair again.

I look at life differently now. Before, we were always going and doing and never stopping to enjoy things. Now, every day feels special — like a treat.

My advice to viewers

My biggest advice is: feel all the feelings. Allow yourself to be upset, grieve, but then push forward. A positive mindset really helps your outcome.

Do your own research — Google may show you the worst-case scenarios, but it helps to be educated for your doctor’s appointments. Block out the noise from everyone else, go with your gut, and find a care team you trust. Be your own advocate.

I fortunately had good medical advocates, but many people get gaslit by doctors. For me, I gaslit myself, thinking, “It can’t be colon cancer, I’m too healthy.”

Don’t dismiss your thoughts. Go get checked if something feels wrong.

I was terrified of colonoscopies, but honestly, it wasn’t a big deal. My advice: follow a bland diet five days prior — chicken, rice, applesauce. Stick to the clear diet and don’t panic about the prep: it does end. I looked at it like a detox, starting fresh. Now, I’ll do a colonoscopy every year if I need to, and I’m okay with that.

If you can get a Signatera test (by Natera), I highly recommend it. It’s a diagnostic tool for cancer recurrence. I had it done during surgery; if it’s positive after surgery, you may still have microscopic disease. I was negative each time, which is a good sign. Ask your doctor; it can also sometimes be done at the time of a colonoscopy biopsy.

Thank you for sharing your story, Sarah!

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From Nursing Student to Hodgkin Lymphoma Patient

Post author By Chris Sanchez
Post date January 23, 2026
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January 23, 2026

From Nursing Student to Hodgkin Lymphoma Patient: How Sarah Rebuilt Her Life

When Sarah first noticed a lump in her neck during nursing school, she had her suspicions it was cancer. She was 29, working night shifts, preparing for finals, and doing everything “right” — waking up at 4 a.m. to go to the gym, pouring herself into her accelerated nursing program, and building the life she’d envisioned for herself. The swelling in her neck, initially dismissed as a possible infection, slowly became impossible to ignore. As test results came back mentioning “abnormal lymph nodes” and her questions went unanswered, she pushed harder for clarity and learned firsthand how exhausting it can be to advocate for yourself in the health care system.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

When a biopsy finally confirmed that she had Hodgkin lymphoma, Sarah read the word “malignant” in her patient portal before any phone call came. The diagnosis collided with her dreams: if it were lymphoma, she would have to leave nursing school because treatment would make her immunocompromised. She describes this season as a grieving process; mourning the life she thought she’d have, the graduation date she’d targeted, and the sense of control she realized she’d never truly held in the first place.

Chemotherapy for her Hodgkin lymphoma brought on nausea, sleepless nights from steroids, and unexpected abdominal pain. Sarah had to take a harsh anti-nausea medication that made her feel worse than the chemo itself. Her treatment also came with deep emotional impacts: hair loss that felt like losing a shield and part of her femininity, weight gain that would not budge, and survivor’s guilt that still surfaces when she thinks about others facing terminal outcomes. Through it all, she leaned on online support groups, telehealth therapy, her parents, her “soul dog” Willow, and the stories she found on The Patient Story to feel less alone.

Today, Sarah is a registered nurse, a profession she has always believed she was meant for. Her Hodgkin lymphoma experience continues to shape how she shows up for patients: validating their feelings, rejecting toxic positivity, and reminding them it’s okay to say that something simply “sucks.” She lives by a simple but hard-earned motto: take it one day at a time.

Watch Sarah’s video and read the edited transcript of her interview to find out more:

It matters to listen to your body and continue to advocate for yourself
A cancer diagnosis can trigger real grief for the life you expected, including school plans, career timelines, and body image — and that grief deserves validation, not minimization
It’s not the patients’ fault that they’re sick; the disease and its treatments drive so much of what happens, and blame has no place in healing
Support from family, pets, peer communities, and mental health care can transform an isolating experience into one that still holds connection, perspective, and meaning
Sarah’s transformation from overwhelmed nursing student to registered nurse illustrates how lived experience with Hodgkin lymphoma can deepen empathy, advocacy, and a commitment to telling patients, “It’s okay to say this is hard.”

Name: Sarah K.
Age at Diagnosis:
- 29
Diagnosis:
- Hodgkin Lymphoma
Staging:
- Stage 2
Symptom:
- Swollen lymph node in the neck and collarbone
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.

Transcript of Sarah’s Interview

My name is Sarah
My first symptoms
Balancing school while trying to find answers
How I pushed for answers
The moment everything changed
I had to drop out of nursing school
Dealing with chemotherapy & survivorship mode
How my physical appearance impacted me
I decided to go back to nursing school
Starting my life again
The survivor’s guilt I feel
How The Patient Story helped me feel less alone
What I want others to know

My name is Sarah

My name is Sarah. I’m from Michigan, born and raised. I was diagnosed in September 2020 with stage 2 Hodgkin’s lymphoma.

I’m very family-oriented. I’ve been in the healthcare field for more than ten years. I’m a registered nurse now. I love dogs. I’m obsessed with dogs. It’s an issue, but it’s also a coping mechanism. I love not taking life too seriously. I like to laugh.

I’ve always kind of said that I was an old soul, but cancer changes you in ways that you just take it a little bit more seriously, because you know how short life is. So I feel like it changed me in a lot of ways, but also I’ve kind of always been like that.

This probably sounds so stupid, but when I was young, I had my grandma. We called her Nanny, and she always told me that I had this very calming spirit to be around. So I always thought in the back of my mind, and I don’t think I’ve ever actually told anybody this, that a big reason why I’m part of the healthcare field is because of that calming spirit. Now, do I believe it in myself? Not necessarily, but I’ve been told that again and again since then, and it just kind of reaffirms that it’s a gift to be in the healthcare field. It’s a challenging gift, but it’s also a really big blessing. I get a lot from it.

My first symptoms

I was working night shift. It was just about to be finals for my second semester of nursing school. I woke up in the middle of the night, and I heard this sound. It sounded so disturbing, but it really was like a spring, like something bounced. I was so tired from working nights that I just went back to sleep.

Then I woke up the next morning, and I started feeling around, and I was like, “There’s a lump there.” I kind of blew it off. I had a little bug bite on my arm, and I took a thousand pictures because I’m so overdramatic that I was like, “It’s cancer.” But I thought maybe it was an infection, and that’s why that lymph node was swollen, even though it wasn’t even that lymph node that would have popped up. It would have been my armpit lymph node. So I kind of let it roll for a little bit, and then after finals, I went to the doctor for the first time.

Super dramatic. My heart rate was so high, my blood pressure was so high, because I just had a feeling. I remember at clinicals a couple of weeks prior, I was walking down the hallway, and I kind of felt odd, but I blew it off because I thought, “My body is not my own right now.” Then I sat down, and I was like, “Sarah, you’re so dramatic. Stop it.” And then two weeks later, that’s when it popped up.

That was my only real symptom. I didn’t have night sweats. I didn’t have unexplained fevers. I didn’t have unexplained weight loss, which I was dramatic about, not because that would have been a good one, but at the time, I was working really hard to lose weight, and there was nothing. I was still getting up at 4 a.m., going to the gym before clinicals. I had my energy. It just threw me for a loop for sure.

Balancing school while trying to find answers

There’s this saying that busy hands make an absent mind, or something like that. I’m probably butchering it. I tried to throw myself into work and school and tried not to think about it. But of course, the more you try not to think about something, the second that you have a quiet moment, you’re spiraling.

I remember having that swollen lymph node and Googling and finding The Patient Story and just binging on it. By the time I was actually diagnosed, I knew what my treatment would be. I knew it all. When she was telling me about the chemotherapy that I would be on, I was already familiar with it because I was already binging and spiraling. I was spiraling a little bit.

At my first doctor’s appointment, they prescribed me an antibiotic just in case, because I had that weird bug bite. Nothing happened. It kept growing. Then I went back because we had gone on vacation up north in Michigan. I was putting ice on it because it was uncomfortable. It was uncomfortably swollen, and I don’t know if that was because I was aware of it at that point or if it was growing.

So I went back to my doctor, and she was like, “Oh, that is a little bit bigger,” but she was never concerned. I had to really push for it. She ordered an ultrasound. I think I got the ultrasound done on a Saturday. The results were posted, and it said abnormal lymph nodes. They didn’t scan my thyroid, and I wanted my thyroid scanned too because I didn’t know. I knew it was cancer; I had a feeling. I just didn’t know what kind.

I was being proactive. I went to my professors and said, “Hey, this is what’s going on.” They told me that if it were a thyroid cancer, I could stay in my nursing school program, but if it was anything else, if it was lymphoma, which it was, spoiler alert, I would have to drop out of the program because I would be immunocompromised.

I remember praying, and it sounds so disturbing, that it was thyroid cancer, so I could stay in the program. I was doing really well. I felt like I was finding my niche. I was getting really good grades. I was in such a good flow that it felt like I was going from 0 to 100. It was so heartbreaking even thinking about dropping out of the program.

That was the beginning. That was the first phase. I was in an accelerated nursing program, so that all happened in about a three‑week time span. After my abnormal lymph node ultrasound came back, they recommended either a fine needle aspiration or a surgical removal.

How I pushed for answers

I don’t recommend this, but I was the patient who was looking in her chart and seeing some of those messages you can clearly tell weren’t for the patient. I was freaking out, and I needed to know because I was either going to drop out of the program or stay in the program. They kind of took their sweet time getting back to me.

I sent a lot of messages, like, a lot, trying to get them to schedule something, because I wanted the lymph node removed. It was uncomfortable. I had to book an appointment, and of course, the surgeon is a week out. Everything is hurry up and wait.

I showed up, and my heart rate was so high. They were like, “Are you okay?” and I said, “Yeah, I’m just freaking out.” They were very gracious in that office. For a surgeon to tell me this (it meant a lot because she wouldn’t cut; she said, “I don’t know what it is.”

I remember the medical assistant who brought me back. He hugged me, and I’m going to tear up, and this is another thing that has carried me through as a nurse, too. He just said, “I’ve got you. We’ve got you.” That felt so good because I felt like I was spiraling and nobody would believe me, which I think is really common for women in healthcare, unfortunately.

She scheduled a thyroid ultrasound. I think it was the next day. I went after school because I just wanted it done. I ended up having nodules on my thyroid. Of course. I had like six. So I was like, okay, for sure, this is thyroid cancer. I can stay in the program.

I remember being so relieved. I remember where I was. I was at a lab at school and thinking, this sounds so disturbing: “Oh, thank God I can stay in the program.”

We did the excisional biopsy, fine needle aspiration, on a Friday. My mom took me, and we were getting everything ready because, of course, you’re scared. You’re having a needle in your neck. The radiologist scanned beforehand, and he just said, “Oh, yeah,” and I was like, “Okay, cancer for sure.”

I was trying not to freak out. The needle biopsy ended up not being as terrible as I thought it would be. It wasn’t painful. They numb it pretty well. But everyone just kind of looked at me with sympathy in their eyes, and I already kind of knew it was something malignant. I knew for sure after that.

The week after was completely agonizing, waiting for those pathology results. Everyone was like, “It’s probably nothing. Everything’s great. It’s going to be nothing. You’re going to be fine.” I remember where I was when I read it in my chart again. It’s a blessing and a curse. It’s a good thing and a bad thing. Anything you can take to the nth degree can be harmful in a way, but in another way, I’m…

It was hard reading that because it said malignant. Malignant in all caps. But I already kind of knew. Patient portals really give you power in your hands. My doctor didn’t call me until the following Monday, after I had already called to transfer my care to an oncologist. All she said was, “I know you know. I got a referral request. If you need anything in the future, let me know.” And what was she supposed to say? It is what it is. But it was hard getting “malignant” and not knowing anything about it at that time.

They got my samples from the fine needle and confirmed lymphoma: Hodgkin’s lymphoma.

The moment everything changed

That Monday, I called my oncologist, and the appointment wasn’t for another month. Hurry up and wait. I scheduled a PET scan and had all of my samples transferred so they could review them.

The day of my PET scan, I was getting ready, and my oncologist called. My phone was dead, charging in my room. She called me, nobody answered, and then she called my mom. My mom answered, and the oncologist said, “Hey, we have a cancellation. Do you want to come in today?” That was unheard of. She didn’t even have anybody else call; it was literally her calling. That was such a blessing.

We went that day before my PET scan, and she already knew everything we were dealing with. The first thing you go through, and it’s not talked about enough, is the guilt you feel about having cancer. Society doesn’t help that because there’s so much of “Oh, sugar causes this,” and the reality is that so much in our environment and culture has the potential to cause cancer. That’s an unfortunate truth. But you would never say that to a kid who got diagnosed with cancer, so why would you say that to yourself?

The first thing she said to me (she got down on eye level) was, “I just want you to know this is not your fault.” I was instantly tearing up. Another thing that has carried me through: “It’s just bad luck.” That’s what she said to me. It was really affirming to hear, and you need to hear that, especially at that time.

She went through everything to expect: hair loss. They can be kind of careless about hair loss, but it’s a big hit for women, especially. I was 29 when I was diagnosed, so at that time, it was devastating to lose my hair. I’m still dealing with it. That’s my biggest thing right now. Two years later, my hair is still not where I want it to be. I’m still not confident in it. And these are extensions. Spoiler alert.

She wrote down on a piece of paper: if I were stage 1 or stage 2, I would have X; if I were stage 3 or stage 4, I would have Y. I went to do my PET scan. I had that lovely drink, and they put a little umbrella in it for me, which I thought was really sweet.

I ended up having stage 2. It was like a cluster of grapes in my left neck, and then I had one spot in my chest, which made me stage 2. All of my labs were normal; well, normal‑ish. My sed rate, which is an inflammation marker, was high but not crazy high. It was just elevated.

I had to drop out of nursing school

I was immediately angry; angry that I would have to drop out, and I didn’t feel like I needed to at that time. I felt like I could have kept going, and that would have been good for me in a way, because it would have distracted me from chemo. Chemo was every other week. I would have chemo treatment day, then two weeks off. I did that for eight rounds.

Towards the very end, the last two months, it’s a cumulative effect. It really took me out. I look back at those pictures, and I looked and felt ill. It was really isolating because, of course, you’re immunocompromised, so you’re isolating from the world. I didn’t want my treatment delayed, so I took that to the nth degree. I didn’t want to risk it.

It was really hard, especially watching people move on and keep going with the program, because I had formed such a bond with those people. They had my back, and I didn’t want to lose that. But it was out of my hands, and I just had to trust God that it would, for whatever reason, make sense in some aspect. I’m never going to understand it this side of heaven, but I tried to trust in that.

I was in online therapy for most of my treatments. I would do telehealth visits on the off weeks when I felt not good, but decent. That helped me a lot, because it’s a grieving process. You’re grieving. I was 29 at the time, and I really wanted to have my degree by the time I was 30. Did a year make a difference? No. But I really wanted to. That was my goal. To have that taken away from me, out of my hands, because you’re just at everybody else’s whim and it’s completely out of your control; that’s hard.

So yeah, I was angry at first, but in the end, I was thankful. I lost my dad in January, very suddenly. I remember, I think it was Alexandra B.’s or something on YouTube. I was watching her videos, and she asked, “What about this time am I most thankful for?” Sort of checking your perspective.

I was with my parents at the time. I’m still living with my mom, but I’m so thankful I had that time with my dad. My mom and dad were there for me, just providers. I would watch sports with my dad to feel that life was still happening outside my little bubble. It was hard, but I’m thankful for it in the end because I got that time with my dad, and I don’t know what I would have done without that.

Dealing with chemotherapy & survivorship mode

I didn’t think treatment would be easy. In some ways, it was easier than I thought it would be, and in other ways, it was harder. When you’re going through treatment, you have this survivor mentality; you’re just in it. You’re in war mode. After treatment is when it all really hit me personally.

I joined a support group online on Facebook, and that really helped me. I know it’s a common trend: after treatment, you’re like, “What did I just go through?” In my first couple of rounds, I did decently physically. The first couple of days were nausea, no appetite, and no energy. I slept a lot.

After those first couple, when I started losing my hair, that was really hard. It was a slow trickle. I didn’t actually shave my head until a couple of weeks after I was done with treatment because I felt like I needed a new start.

The first couple of days of each cycle were hard physically: sleeping, nausea, discomfort. The steroids they give you mean you can’t sleep. You need sleep, but you can’t sleep, so you’re jittery. During treatments, they gave me Cinvanti, a long‑acting anti‑nausea medication. That made me so sick. It made me sicker than the chemo. It was like having cement poured in the back of your throat, that gross feeling.

I complained about it from the first infusion on. They tried tips like sucking on a mint, sucking on a Jolly Rancher, pushing it really slow, and diluting it a lot. Nothing worked. I was dry heaving every time they pushed it. It was horrible, and then I would be super nauseous the rest of the time. Infusions were three hours.

I made it through all of my infusions. I remember my second‑to‑last infusion was really bad. I was dry heaving the whole time. I had a nurse, an angel from heaven, who advocated heavily for me, saying, “She can barely tolerate her treatment. Can we do anything else?” They ended up switching my drugs to Emend, and my last infusion was better. I didn’t have that Cinvanti pushing. Cinvanti was not my friend, which is weird because that wasn’t even the chemo.

Then there was the chemotherapy. After the chemo, it was almost like a heat in your chest that progressed into nausea as time went on. My mom was always with me at my infusions — another angel from heaven. It was hard to watch her watch me. You try to be strong because it’s heartbreaking to watch your kid go through chemo.

I remember when I was diagnosed, my dad never cried, but he had tears in his eyes, and he said, “It should be me.” I said, “I’m thankful it’s me because I know I can handle it.” That memory has stuck with me, especially living with me; I knew it was hard for them to watch.

Treatment was tough. You go into survivor mode and tell yourself it’s not that bad when you’re going through it. Even now, I say, it was what it was. I’m not going to say it was impossible to get through, because you get through it. You lean on people, and you take it day by day. Even now, my motto is one day at a time.

I had a friend from the support group who also had Hodgkin’s and had just gone into remission. Her motto was “Faithful God, strong body, powerful mind,” and she would say, “You’re one day closer.” I had that posted on my mirror. It was my go‑to for everything, and I still find myself living day to day.

How my physical appearance impacted me

I’m an introvert, and I find myself — I didn’t know this at the time — hiding behind my hair. Losing my hair almost felt like losing a shield, losing my femininity. At the time it happened, I felt kind of numb because I was losing my hair anyway. It’s uncomfortable to lose your hair. Your scalp is sore. You can’t do anything with it. Even washing it, you lose heaps. I could put it in a half pony, and the next day, when I took out the pony, half my hair would be gone because it was dry and brittle and dead.

I felt like I was ready to shave it after treatment because I was still losing my hair, but I was supposed to be done with treatment. It felt like the next step to regrow from the start. I didn’t fully know how long it would take, and that really hits you. I still think, what if I had kept the dead hair and just let it grow — would I be better off now? Would I have longer hair?

It’s awkward growing out. The hair grows at the same rate, but it shows up differently on your head, so it’s a bunch of choppy layers. I’m never getting layers after this.

It took a lot, and I still feel like part of my confidence and femininity was stripped from me, and I still struggle to get that back. I also gained weight during and after treatment, and it’s been really hard to get off. In fact, it’s not coming off.

When I was younger, I lost 60 pounds and kept it off for almost six or seven years. Then I got diagnosed and gained 20 back during treatment, and then 10 after. I didn’t fully understand why, and I still don’t. I don’t know if it was steroids or my body being in shock, but it will not come off. I’m really struggling with that.

Two parts of my confidence were taken away from me against my will. When I spiral about it now, which still happens, I get really mad because it was completely out of my hands. It still feels out of my hands. I’m just at the whim of time. I try not to dwell on it. I tell myself, you can be angry for a minute or two, but it is what it is, and you’re just going to move forward. But it’s hard, especially as a young female.

I decided to go back to nursing school

I always knew I was going to go back. I had to reapply to get back into the program, wait for a spot, and then restart from there. Even going through treatment, I kept saying, “This is going to make me a better nurse. This is going to change my mentality. I’m going to learn from this. It’s all going to be great.”

It did change me in a lot of ways. I had nurses advocate heavily for me. I didn’t start with a port. I have really crappy veins. I don’t understand why more people don’t go straight for the port because a lot of those chemotherapy drugs are heavy-duty. If they leak into your skin, it’s not a fun time. I saw nurses advocate. I saw how they handled things, and I thought, “Okay, I’m going to use this and move forward in how I care for my patients.” Advocating is something I really learned going through it.

I went back to school after reapplying to the program. I also had my dog. Her name was Willow. She actually got diagnosed with osteosarcoma right before I got diagnosed with Hodgkin’s lymphoma. She was my what I call my soul dog. Ruthie’s okay, but she’s still learning. I love Ruthie too, but Willow was my soul dog.

That was really hard. Willow was limping on one leg. She was only supposed to make it a couple of months, and she made it another year before we went in. The day we went to the vet to put her down, because it was time and she was clearly in too much pain, I got back into the program with her snuggled into my lap. That was hard, but it almost felt like she was an angel in another way. She carried me through. She got me through that year, and then it was her time.

It was difficult to reset because I had dropped out halfway through the program, so all those friendships were already formed. I’m an introvert and take a while to warm up to people. It was hard to start in the middle of someone else’s program.

Starting my life again

Restarting was hard, but everyone I started with was super nice. They kind of gravitated toward me and got me through. They were really there for me when my dad died, too. I got to meet people I would have never met in another world, and I try to keep that perspective.

When I was supposed to graduate, which was May of that year, my best friend from nursing school asked me to pin her. I went and did that. It was so hard. I remember getting through it and then going home and sobbing. I felt like I was grieving the life I should have had.

I remember hugging my dad, and he gave me a big hug and wouldn’t let go. I let myself be sad and then reminded myself, it is what it is. You can’t change it. Being sad or mad doesn’t change the outcome. Then I tried to move forward.

That was the peak of it. I started angry, then I got sad. You get through the program, and in a lot of ways, my treatment helped me through the program. The cancer units were a breeze for me.

Now that I’m out of it, I don’t really feel any emotion toward it, because I’m done with it. It’s over. But going through it is hard. You hype it up in your mind, like most things.

The survivor’s guilt I feel

It feels almost surreal. I talk about it all the time, but it almost feels like it happened to someone else because I’m so disconnected from it. I remember reading that in my support group while I was going through treatment and thinking, “That’s never going to happen to me,” because when you’re so in it, you don’t see anything outside of it.

Now that I’m two years out and life has happened — I lost my dad; someone close to me was diagnosed with melanoma — that was harder for me to watch than going through it myself. I wanted to be the one to take it. Survivor’s guilt is very real. I still struggle with that: why am I okay now, and someone else is terminal?

Even with nursing, being exposed to it so often and having to check yourself, you really have to get good at compartmentalizing while trying to be gracious. That’s been hard. Two years out, it feels like it happened to someone else. I try not to dwell on it. It always creeps up when I’m trying to get dressed or dress up and feel pretty again. I haven’t felt pretty in three years. That’s when the anger creeps up.

I spin out about it, and then I’m okay. That’s when it hits. Other than that, I try to think about how I felt in all those phases, especially during the diagnostic phase, which is grueling. Of all phases, that’s the one I would never relive. The anxiety ate me alive, not knowing what was wrong and having to really fight, which you shouldn’t have to do, but it is what it is.

That carries through to how I handle my patients. I try to keep that in mind. I never take anything too personally because I know what that was like. It’s not personal; it’s people coping however they cope, and there’s no right or wrong way.

I was reading on a cancer site about how to empathize with patients through hard stuff. One line I screenshotted and wanted to keep in my back pocket was: this isn’t an easy thing, you’re handling it with grace, but it’s okay if you don’t. I try to tell that to my patients when they say, “I’m sorry for complaining.” I tell them, this isn’t complaining. You can complain to me all you want. I’m not going to tell you that you have to be positive. Toxic positivity is a real thing. You can say something sucks. You don’t have to dwell on it, but if something sucks, say it sucks.

It’s changed me in a lot of ways; mostly good, some bad, but mostly good.

How The Patient Story helped me feel less alone

I found The Patient Story right after everything started happening. Google is your friend, but also your foe. I found The Patient Story and started binging videos. I remember I was still in school at that point, and our first unit, ironically, was on cancer, so I felt like in a way I was still kind of studying.

I was reading about it, watching a lot of videos, not reading my book at all, just watching videos. Seeing everybody go through it and knowing they were okay made me think, okay, maybe it’s not the end of the world. You do feel less alone because it’s so isolating. People can’t really understand it until they go through it themselves, and it’s not something you’d wish on someone.

That’s another thing with survivorship. You feel alone because no one truly understands you, other than other survivors. I found The Patient Story for that, and even going through treatment, I watched videos because I feel less alone. The steroids kept me up doomscrolling. I also had abdominal pain a lot through chemo, and I wasn’t prepared for that. It would creep up at night, so I was up a lot, watching videos and feeling less alone.

Even now, I still watch the videos. There’s such a community behind it, and you really don’t get it until you’ve gone through it, especially as a young adult. It is what it is.

I have a friend who was diagnosed a year before me. We went to high school together. She had Hodgkin’s, too, stage 2, so we were like twinsies. We message each other all the time, usually going off about our hair. It’s curly, different than what we’re used to, so we complain about our hair. It’s nice to have someone who understands, instead of someone trying to say, “Oh, it’s okay, it’s not that bad.” You can acknowledge it sucks. You don’t have to dwell on it.

That’s my mentality a lot with cancer: you don’t have to say “yay,” but you can be honest. It took a while for us to reach out after I was diagnosed and build that camaraderie, but in the meantime, The Patient Story was like having a friend.

What I want others to know

My biggest advice is to take it one day at a time. It seems so cliché, and I probably rolled my eyes at it in a past life, but when you’re in it, it really is one day at a time. Don’t skip ahead. So much of it is out of your control.

It deepened my faith a lot — leaning into others, leaning into God, knowing it’s out of my hands. Part of the grief you feel is that you think you’re losing control of your life, and realistically, you never had control. That was big for me: one day at a time, leaning into my faith and others.

Another thing: acknowledge it sucks. Don’t dwell on it. I’ve said that a thousand times, but I really harp on it. People can take that and only think about it — “My life sucks” — but then you’re doing yourself a disservice by dwelling. If you dig deep, there are lessons, perspective shifts, a lot in it.

I remember reading that people moved on from cancer and thinking in my support group, “That’s never going to be me,” because when you’re in it, you’re so in it. But it really does start to drift off, which is beautiful.

I still go for blood work every six months now that I’m almost at the two‑year mark, and I go for visits. It’s never gone; it’s always in the back of my head, but it’s less prominent, which is awesome. Right after treatment, I remember being at a family wedding. I started having a panic attack because I had a rash on my hand. When I got diagnosed, I had a rash and unexplained itching with Hodgkin’s, so I spiraled. The rash came back; it turns out I just had psoriasis, and it was irritated, but I spiraled. There’s a picture of me mid‑cry. It could be a meme. It’s objectively funny now. It wasn’t funny at the moment.

Those emotions creep up. Acknowledge that it’s okay. Cancer is always going to be in the back of your mind, but it doesn’t have to take over. Compartmentalizing is a big thing, and that’s something I learned in therapy. I recommend telehealth. It helped me say, “Okay, this is what I’m thinking, these are the facts, and what else might be true?” That framework, especially with cancer, has helped me a lot.

Thank you for sharing your story, Sarah!

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Kina’s Stage 4 Colorectal Cancer Experience Highlights Fierce Self-Advocacy

Post author By Chris Sanchez
Post date January 19, 2026
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January 19, 2026

Kina’s Stage 4 Colorectal Cancer Experience Highlights Fierce Self-Advocacy

Living in Canada, Kina always thought her intermittent IBS symptoms were just another part of her daily life, especially after becoming a mother. It was only when she noticed a flare-up in her IBS symptoms and, more ominously, blood in her stool that her doctor finally scheduled a colonoscopy, revealing a mass and launching her into a world she never expected as a stage 4 colorectal cancer patient. For months, doctors assumed it was an early-stage disease. But pneumonia-clouded scans hid cancer that had spread to her lungs, and only through persistence and a PET scan was the correct, advanced staging determined.

Interviewed by: Carly Knowlton
Edited by: Chris Sanchez

Self-advocacy became her focus. When an Ottawa surgeon offered limited surgical intervention, Kina joined patient groups, found others who also had colorectal cancer, and connected with a Toronto surgeon willing to attempt a more extensive procedure. Chemotherapy was followed by lung surgeries and a highly specialized procedure known as a chemoperfusion. Kina endured side effects like debilitating fatigue, neuropathy, and nausea, but the greatest burden was not being the present mother and partner she wanted to be. But her advocacy, networking, and relentless pursuit of the best treatment shifted her colorectal cancer experience from “incurable” to “no evidence of disease.”

Kina’s colorectal cancer experience deepened her gratitude and reshaped her worldview. Instead of regret over “Why me?” she reflected on why she deserved a second chance when others did not. She now encourages others to value every moment and says, “You just appreciate the beauty of nature, the wind in your face, the beauty of life, the little moments.” Kina’s transformation is profound: she shifted from a busy, overextended mom and professional to a fierce self-advocate and champion of preventive care. As she says, “The most difficult patients are the ones that survive: the ones that fight back, the ones that challenge the status quo.”

Watch Kina’s video and read through her interview transcript below. You’ll learn more about how:

Early symptoms of colorectal cancer can easily be missed or mistaken for IBS. Advocate for yourself if symptoms change or worsen
Getting a second opinion and connecting with others facing similar diagnoses can help make more treatment options available
Peer support groups, research, and information-seeking are critical allies in complex or advanced cancer cases
Kina’s cancer experience made her more grateful, present, and empowered to help others prioritize health and demand the best care
The most stubborn patients are most often the ones who survive

Name: Kina L.
Diagnosis:
- Colorectal Cancer
Staging:
- Stage 4
Age at Diagnosis:
- 39
Symptoms:
- Flare-up of IBS symptoms
- Appearance of blood in stool
Treatments:
- Surgeries (through a clinical trial): double thoracotomy, lung resection
- Chemotherapy, including chemoperfusion (through a clinical trial)

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.

Transcript of Kina’s Interview

My name is Kina
My long history with IBS
How I advocated for myself before diagnosis
My hardest moments leading up to my diagnosis
My initial diagnosis and staging surprises
I researched, found better options, and had surgery
I’m now NED
My thoughts on clinical trials
My mental and emotional journey
What I want others to know

My name is Kina

I’m from Ottawa, Canada. I was diagnosed with colorectal cancer that had spread to my lungs.

I’m passionate about my family more than anything else. I love being outdoors: hiking, running, biking, camping, and just being among the trees. Reading and the written word are also big passions for me.

My long history with IBS

I’ve had IBS symptoms on and off for my whole life. They would come and go, so they became normalized, which was unfortunate because that can happen with colorectal cancer.

After I gave birth to my kids, my IBS symptoms disappeared for quite some time. I chalked it up to hormonal changes in my body, and I was no longer intolerant to some foods I had been before.

About six months before my diagnosis, my IBS symptoms started flaring up again. I cut dairy and coffee, and I saw some mild improvements. But then, at the end of summer and beginning of fall, I started having blood in my stool. That’s when I thought something was definitely wrong.

I booked an appointment with my doctor, who was already aware of my IBS symptoms. As a woman in my late 30s, I’m always dealing with symptoms and hormone stuff, so we didn’t look into it further at first. She booked me for a colonoscopy at the end of December, and that’s when they found the mass in my colon.

How I advocated for myself before diagnosis

My doctor is very good, so she booked the colonoscopy right away.

At the time, I had a new gig at work that I was excited about, so I was transitioning and initially put off the colonoscopy a bit. As a mom with two kids and two stepkids, plus a busy job, the last thing I was doing was taking care of myself. I had booked it for the end of January, but my partner pushed me to get it done sooner.

I called back and asked for the earliest appointment, so we did it on December 23rd. Christmas wasn’t fun, but at least I got the surgery at the end of January because of the quicker appointment.

My hardest moments leading up to my diagnosis

The hardest moments extend beyond just cancer for women my age; we’re very busy and overextended.

A lot of my girlfriends are dealing with different things, like one working on a PCOS diagnosis and another suspecting endometriosis. We push off getting checked because we’re constantly getting sick from our kids’ colds, and our immune systems are shot down.

I never felt healthy for maybe 6 to 10 months before diagnosis, but it was normalized. My immune system wasn’t working well, and I was getting all the illnesses, which impacted my family.

It wasn’t the cancer symptoms themselves, but my body not working right that was toughest.

My initial diagnosis and staging surprises

When I got the results back, they thought I was early-stage. The mass was pretty small, just four centimeters, and intact in the colon, not going through the wall.

My surgeon, GI doctor, and everyone had a good feeling about it. They removed 47 lymph nodes during surgery on January 31st.

But when I talked to my surgeon about the pathology afterward, he said eight of the nodes were cancerous, and I’d need preventative chemo. That was the first shock — I really thought it was early-stage and I’d go back to work.

Two weeks later, a CT scan showed the lung nodules had grown. I had a bad feeling it was cancer there too, but after the lymph nodes news, I already knew my journey would be long.

For four months, it was shifting from early stage to stage three with chemo, then to stage four and inoperable. I got diagnosed in December, and March was when they officially said stage four.

Colorectal cancer didn’t click for me

I didn’t know much about colorectal cancer at the time. The narrative is that older people get it, so even when I Googled my symptoms, it was worded as risks for people aged 50-plus.

I had a colleague, a bit older than me, who was diagnosed and unfortunately passed away, but because of how people viewed colorectal cancer, it just didn’t click that I could be facing the same situation. The early onset affecting younger people wasn’t discussed much back then. Even with a bad IBS night, googling symptoms didn’t point me to cancer.

Now I’m adamant: even if you have one symptom, get checked, because if I’d gone before the blood showed up, I might have caught it earlier. By then, it was already advanced, very focused on chemotherapy.

Initial treatment options, and my chemotherapy experience

My oncologist described therapy and chemotherapy options. She referred me to the Ottawa surgeon, but she’s not a surgeon, so discussions were limited to chemo and hoping for the best.

I wasn’t eligible for immunotherapy, and clinical trials were more like something down the line. There’s a gap there; I understand standards of care and protocols, but my doctor likely didn’t know about other options like the Toronto surgeon.

If I hadn’t researched and advocated, I’d still be on chemo with the nodules grown and inoperable. They basically put me on chemotherapy for life until I found the surgical option.

The only reason we stopped chemo was for the Toronto surgery. I did six rounds in three-week cycles, about 4 or 5 months.

Chemotherapy is not fun at all. I was lucky to tolerate it well compared to others, but I had neuropathy, fatigue, a kind of metallic mouth where everything tastes like metal (it’s disgusting), and nausea. It was hard to do day-to-day stuff, especially near the end when I was on the max dose.

It was tough being the mom, partner, and friend I usually am. It impacted everything, but I have good people around me: a present partner, my mom always helping, and good co-parenting with my ex-husband. They picked up the slack when I couldn’t.

I rested the first few days after treatment, then tried to be there as much as I could. Sometimes I’d crash or overdo it and feel like garbage the next day on the couch. I forced myself to stay active; a short walk around the block helped manage symptoms. If I felt okay, we’d bike to school, go for a run, or hike to keep that outdoor connection.

I researched, found better options, and had surgery

I did a lot of research right away; I joined virtual conferences and exposed myself to everything I could. At first, it was difficult hearing tough things on a weekend, like attending two online conferences, but now it’s part of my reality.

I started researching to help myself immediately. That’s how I found the Toronto surgeon through Facebook groups.

My doctor accepted the referral, and he was removing nodules via a clinical trial.

After CT scans confirmed eligibility, we stopped chemo, and six weeks later, I had my first surgery on September 25th, a double thoracotomy on both lungs.

They then resected three nodules on my right lung and five on my left, plus a suspicious lymph node that turned out not to be cancerous, which was, of course, great news. The surgeon performed chemoperfusion on my left lung as part of the trial.

I was supposed to be in the hospital for a week, then stay in Toronto another week for a total of two weeks. But I had complications: blood transfusions, atrial fibrillation, lung collapse, and pneumonitis from the chemo inflammation. It was the highest dose they’d done, 40mg, and previous patients didn’t inflame, but I did.

Two weeks in, pneumonitis set in; I was on high oxygen, steroids, and antibiotics. I stayed a month and came home on October 22nd.

Improvements are slow, but happening. I’m still on oxygen when walking or talking; short of breath after almost two months. Recovery from that takes time.

I’m now NED

Technically, I have no cancer in my body right now, and I’m hoping for the best.

We haven’t confirmed with a CT scan yet, but before surgery, the removed lung nodules were the only ones left.

I stopped chemo for the surgery, so no bell-ringing yet, but my friends and family talk about it. I think I should ring it to recognize everything I’ve been through, no matter what comes next in the next year.

When I came home, my mom stayed for five days to help. We were lucky; people took good care of us. My girls are seven and ten, my stepkids are six and eight, so it’s busy and awesome.

Having me away for a full month was hard, but we made it through. They’re so happy to have me back emotionally.

My thoughts on clinical trials

Clinical trials are great for advancements, but they come with risks, and I’m a great example. I found a couple of people who’d gone through this trial before and spoke with them via the Facebook group.

The early-onset stage four colorectal under-50 community is small but growing. Do your research, talk to people if you can, and know the risks because side effects are real.

Sometimes it’s worth it, not just for you but for others who could benefit later. As I mentioned earlier, I’m still recovering; not at full capacity, walking slowly with oxygen.

My mental and emotional journey

I don’t think “why me?” It’s the opposite, like imposter syndrome: why would I deserve to be cured when others aren’t?

The hardest part is knowing that if I’d found it earlier, I wouldn’t be here now. There’s regret for not paying more attention.

I encourage my girlfriends: don’t delay, a colonoscopy is the gold standard for colorectal cancer. So just do it. Many around me took it seriously, got colonoscopies, and had polyps removed; that’s when you want to catch it, not too late.

If there had been more advocacy for early-onset colorectal, it would have clicked sooner, and I’d have acted differently, 100%.

It’s not a gift, but it gives perspective. Right after stage 4 diagnosis, I went for a walk and appreciated everything: the beauty of nature, wind in my face, and little moments. Before, I was busy, saying yes to everything, always on the go with work. No matter what, I won’t operate that way again—life’s too short, take care of yourself.

What I want others to know

Work as hard as you can to advocate for yourself. Make sure the option presented is the best for you.

There are so many treatments, clinical trials, and other things out there. Don’t take the first answer; challenge your doctors. Books say difficult patients, namely the ones who ask questions, fight back, and challenge the status quo, are the ones who survive. Don’t be afraid. You have to take care of yourself.

I think my self-advocacy may have saved my life. If I hadn’t, I’d be in a very different situation.

I was lucky to be positive and resilient; it carried me through. I focus on gratitude because it could be worse. I responded to treatment, found a surgeon, and have people around me.

I have so much to be grateful for. It’s ingrained in me to keep a positive mindset. Colorectal cancer in young people is rising. If you’re experiencing just one symptom, look it up, go for a colonoscopy.

Getting the appointment is tough, but don’t ignore the symptoms, and advocate for yourself.

Thank you for sharing your story, Kina!

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From Life with a Newborn to Stage 4 DLBCL: Anna’s Story

Post author By Chris Sanchez
Post date January 17, 2026
No Comments on From Life with a Newborn to Stage 4 DLBCL: Anna’s Story

January 17, 2026

From Life with a Newborn to Stage 4 DLBCL: Anna Navigates Her Diagnosis Through Positivity

Anna was just settling into the sweet spot of life, running a coffee business with her husband, enjoying her new home, and parenting her toddler and newborn, when she found an unusual lump while breastfeeding. Though it was initially dismissed as a common milk cyst by her OB and even after an ultrasound, Anna’s persistence led to a biopsy that revealed a shocking diagnosis: diffuse large B-cell lymphoma (DLBCL). It was stage 4, an advanced presentation that initially terrified her family and friends, but was quickly clarified by her oncologist as a highly treatable blood cancer.

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Facing aggressive chemotherapy and hair loss while caring for an infant and a toddler presented immense emotional challenges. Anna had to stop breastfeeding abruptly and navigate the physical changes of treatment, including shaving her head, a moment she feared would scare her children. Instead, her two-and-a-half-year-old son’s reaction was pure love: “Oh, mommy, you look cute.” This moment, along with seeing a contestant rock alopecia with confidence on The Great British Baking Show, helped Anna embrace her new look and focus on the present joys of motherhood rather than the fears of the future.

Throughout her DLBCL experience, Anna has leaned into her natural optimism, reframing her diagnosis not as a tragedy, but as a challenge she is uniquely equipped to handle. By taking life one day at a time and refusing to wish away her baby’s first year to get to the end of treatment, she has found profound strength. Her story underscores the power of a supportive “village,” the resilience of young mothers, and the importance of advocating for yourself when your body tells you something isn’t right.

Learn more about Anna’s story by watching her video or scrolling down to read her edited interview transcript.

Trust your instincts. Even when medical professionals suspect a common issue like a breastfeeding cyst, push for answers if something feels wrong in your body
Stage 4 isn’t always the end. In blood cancers like DLBCL, a kind of non-Hodgkin lymphoma, stage 4 indicates where the cancer is located, not necessarily a poor prognosis; it remains highly treatable
The “candle” analogy. Chemotherapy treats systemic blood cancer (multiple candles) just as effectively as it treats a single spot (one candle); the “water” extinguishes them all
Children can be resilient anchors. As Anna’s kids show, young kids often accept physical changes like hair loss with surprising ease, and can keep you grounded in the present moment
You are stronger than you think. Adversity often reveals a depth of resilience and toughness you didn’t know you possessed until it was tested

Name: Anna M.
Age at Diagnosis:
- 31
Diagnosis:
- Diffuse Large B-Cell Lymphoma (DLBCL)
Staging:
- Stage 4
Symptom:
- A rapidly growing, painless lump on the breast
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.

Transcript of Anna’s Story

I’m Anna
Life before my diagnosis: new motherhood and business
Discovery: finding a lump postpartum
Diagnosis: from breast cyst to non-Hodgkin lymphoma
My initial reaction and the silver linings
Sharing the news with my family and friends
Understanding stage 4 DLBCL: the candle analogy
Coping with hair loss and finding confidence
Parenting through cancer: navigating my diagnosis with my kids
Finding silver linings in adversity
Looking to the future: one day at a time
Advice for patients and loved ones

I’m Anna

I have diffuse large B-cell non-Hodgkin’s lymphoma, stage 4. I was diagnosed this year in October, and I am from Arkansas.

At this point, my biggest passion, purpose, and what I’m doing every single day is I’m a mom. I have two small boys. I have a two-and-a-half-year-old and an eight-month-old. I worked full-time before having children, but once I did, they were obviously the most important priority. Being able to spend time with them has become my life’s work, now that they exist and are alive. Before that, I worked in journalism, in storytelling, in instructional design. That was my career before children.

My husband and I also own a coffee company. We do events. We take coffee catering to events like weddings, corporate events, and birthday parties. We basically get to be at people’s greatest times, serving coffee and talking to people in the community. It’s really fun. It’s been a really good way to stay connected while I am a stay-at-home mom. I would say my number one passions are my children and then being in the community in some aspect, getting to be involved with people, especially on people’s wedding days. That’s just the most fun thing ever because it’s their happiest day, and getting to witness that, even if I’m just serving coffee, is really cool.

I have kind of always been this way, smiling. I actually had to learn in my adult years how to be angry and how to deal with negative feelings because I had some. At times, it might be toxic positivity, just always being so positive and kind of ignoring and shoving those other feelings to the wayside. But I think as I’ve grown, and especially as I’ve dealt with adversity, I’ve learned that you can have both at the same time. You could recognize the bad and still feel the good and the joy and the positive, which I think has been really important to learn. Cancer has been another thing that has taught me that.

My mom instilled in us when we were little to be able to laugh at ourselves and not to take ourselves too seriously. I think that has just made me always find the silver lining or the brighter side, or to help other people feel that. If it’s kind of like — I’m sure you saw some of my videos making fun of my no hair or bringing light to my baldness — I will make myself not the butt of the joke, but I will make a joke out of something if it means somebody else is going to laugh. If it can bring some positivity and some joy to someone else. I think I can turn situations into that for myself. It’s just always kind of been ingrained in me since I was little.

Life before my diagnosis: new motherhood and business

Right before diagnosis, I had a baby, this April. We were just in the sweet spot of postpartum. We have the happiest baby. He is just the smallest little guy. So we were just really soaking up being second-time parents. We kind of know a little bit more about what we’re doing. We’re not as terrified because we’ve already done it once. Our older child was really excited to be a big brother.

Our coffee business is doing really well. We ordered a coffee roaster so that we could spread our reach; we wanted to be able to sell coffee to people, to be able to ship it, and spread the people that we’re able to serve, rather than just locally. We were kind of just in the groove. We were flowing. Being parents, being business owners — my husband’s also a teacher. So we were balancing all of these different things. Really getting into the groove of being new parents again and just enjoying life. My children and I were going out on adventures in town and playing outside, and just getting ready. I think whenever we found out about cancer, we were prepping for Halloween and getting the costumes ready.

Life just seemed like we were in a really good, sweet spot, which we were. A new baby brings so much joy and positivity. And as I said, he’s a really happy baby, too. We’ve owned this business for four years. So we were really in the flow of that. We were doing some renovations to our home as well because we’ve lived there for four years now. Everything was just kind of in a really sweet spot in life. We were thinking about when we’re going to do some camping trips and traveling because we’ve got the hang of being second-time parents. We weren’t as scared to take our baby out. Everything just seemed like life is good. Nothing’s really wrong. I was getting into the groove of working out again and just starting to feel like my normal self after having a baby. And then everything kind of changed. There’s still a lot of goodness, like I said. But that was life before, just a few months ago.

Discovery: finding a lump postpartum

The main symptoms of the cancer that I have are fatigue, night sweats, a fast-growing, painless lump in one of the lymph node areas (or outside of, in my case), and unexplained weight loss. For me, I was postpartum. Obviously, I was fatigued. I’m not sleeping through the night yet. I had lost weight because I had just had a baby. So that kind of explained it. Nursing and having a new baby and hormone changes — sometimes you do have the occasional hot flash, night sweat, whatever. So any symptom that I was having, I was unaware of because they were all kind of masked as just being a new mom, postpartum, and hormonal changes.

There was one night when I came back to go to bed after putting my son down, and I told my husband I felt a lump. I said, “Does this feel weird to you?” I found a lump in my breast. He was like, “Yeah, that definitely seems like kind of a big lump. Maybe you should call your doctor and get that checked out.”

I called my OB, and she was like, “Oh, we’ll get you in. It’s probably just breastfeeding-related because that happens a lot of the time.” She expected it just to be a cyst of sorts. Then she sent me to just get it double-checked. She was like, “I’m pretty sure it’s just a cyst from breastfeeding. But let’s go ahead and get somebody else who specializes in this to look at it.”

She sent me to get an ultrasound and a mammogram. They said the same thing: “It looks like it’s probably just a cyst from breastfeeding.” I think looking back now, that was probably because it wasn’t breast cancer, so it didn’t present as a typical breast cancer would. Anytime they looked at it, they were like, “Yeah, I don’t know. It’s kind of in the gray area, but most likely a milk cyst.”

Diagnosis: from breast cyst to non-Hodgkin lymphoma

They ended up deciding on a biopsy. Then once the biopsy came back, of course, this all happened in two weeks from when I first discovered it to finding out. They called me. The doctor who did the biopsy called me, and he said, “Your results came back, and they’re very interesting, a little unexpected.” I was like, “Okay, go ahead.” And he said, “Well, you don’t have breast cancer.” I was like, “That’s great news. Thank you. I’m so thrilled.” And he was like, “But you do have cancer.”

I just felt chills and the wave of… I think I started trembling, just thinking, You just told me I had cancer. Did I hear that right? He said, “You have non-Hodgkin’s lymphoma. It’s called Diffuse Large B-Cell Lymphoma. Do you have any questions?” I was like, “Well, yes, but I can’t think of any of them right now.” I think I asked a question that was just the first question that came to my mind, and he was like, “Actually, this is not my area of expertise. I’ve already sent this over to an oncologist. They’ll reach out, and they’ll be able to answer more questions.”

Really, truly, I didn’t notice any symptoms. Even when my blood work was drawn, it was relatively normal. There was no indication that there was cancer. It was really just that fast-growing, painless lump that I felt. Thank goodness I didn’t brush it off or just think, Oh, we’ll see what it does in a few weeks or anything like that. I’m really glad that people took me seriously when I showed, “Hey, I think this is a little abnormal,” because I know sometimes people will do that, and they’ll say, “Let’s just watch it for a little bit and see.”

My initial reaction and the silver linings

In a way, I thought our life was derailed at first. I was talking with a good friend from college the other day, and he was asking me all of these questions and really getting me to think about things I hadn’t thought about yet. I gave him back an answer, and then he said, “I’m not glad that you have cancer by any means. But I am so glad that you are you if this was going to happen to you.” I think what he meant is really just the way I have always just kind of been able to turn something into that silver lining to look for it.

Looking back, I’m just seeing all of these things that set us up for this diagnosis. Yes, we were in a sweet spot, but we were also so set up for this to happen. I bought a house right next door to my mom four years ago, so I have help right next door. I just had a baby, which is like the most joyful thing you can see every day. It reminds you that there is good even when bad is happening. As I said, I have the happiest baby. Anytime I would feel sadness or start to think about what was going on, I would look over, and he’s just smiling at me. It’s like, Okay, this sweet spot that we’re in, this place that we’re at, really sets us up for this to happen.

I also think in my family, not that I would ever want anybody to have cancer, but if somebody in my family was going to have to have it, I’m glad it was me. I feel like that sounds so weird to say, but it definitely feels like if it had happened to anybody else, it would have been harder emotionally for me. I’m looking at my family members and I’m like, I’m so sorry that you have to feel this because I know watching someone you love go through something like this is really hard. Being a mom now, I look at my mom and she’s been so positive and so helpful and so encouraging, but I know that there are times when it’s just really hard to watch your kid go through something like that. I can’t even imagine. My kid has a fever, and I’m like, The world is ending. So it’s definitely been a 180 from the sweet spot. But I know that it set us up to have the best experience that we could if something like this was going to happen.

Telling people was really hard because I kept trying to find a convenient time. When I found out, I immediately went and told my mom and sister because they work close by. So I was able to get my kids in the car and drive to where they were. I waited until my husband got home that day because I didn’t want him to hear that news while he was in charge of other people’s kids. That is not a good time for that.

I definitely felt a lot of vulnerability and a lot of emotions and a lot of fear right away. You hear the words, and then you don’t know. I didn’t even know what lymphoma was before I was diagnosed. I didn’t know staging yet, or treatment, or what anything was going to look like. That was hardest for me: to not know what was going to happen and to just have so many questions. That’s when I think I showed a lot of my vulnerability and a lot of fear and anxiety. Everybody else kind of met me with their emotions, too, which I think was probably the best response to know. A lot of times, certain medical revelations or diagnoses can almost make you feel like you’re overreacting. When my emotions of fear and anxiety were met with the same, I was like, Okay, this makes me feel validated and like we’re ready to fight together. It was good to be met with that in the beginning. Once I started to know that there was a plan and it’s very treatable, I started to feel more positive, and then in turn, my family felt the same way.

As far as telling friends and other people, I was really nervous. I just didn’t want to inconvenience anybody or cause them to have a bad day. I was looking at people’s locations, like, Okay, are they at work? Are they at a friend’s house? I would text people and be like, “Hey, what are you doing?” And they’re like, “I’m just working. Why? What’s going on?” And I was like, “Oh, nothing. Just, you know, I have a funny story to tell you, but just let me know what you’re doing later.”

No one tells you how to break bad news to somebody else. I tried to make light in a lot of the ways that I told people. I’d be like, “Turns out I have cancer.” And my friends are like, “What? Wait, what did you just say?” And I’m like, “Yeah, I know, crazy, right?” Probably not the best way to do it, looking back, but you don’t know what to do. I had never had anybody personally break that news to me about them. I just really had no way to know how I should go about it. So, typical me, I tried to make it a lighthearted thing. Telling people was hard for sure. But once I started to, I felt like it really just helped me know how many people were on my team. And it was even further reinforced. Okay, I can do this. Like, there is nothing that I can’t handle with this village backing me.

It makes people feel better, too, if they have some facts, some information they can kind of hold on to. I had people who I knew were going to start Googling, and they’d end up on WebMD. I’m like, “This is what I know. Don’t Google it because it sounds scarier on Google than what the doctors told me. If you have questions, ask me, and I’ll make sure we address any concerns. Don’t go on Google.”

Understanding stage 4 DLBCL: the candle analogy

Initially, when I told my husband, he was terrified. The word cancer — he was like, “You’re going to die. This is the end of everything. This is the worst news.” I was like, “Okay, wait, let’s get some more information. We don’t know anything yet.”

We met with the doctor. Initially, it was before the PET scan. He did blood work and an initial exam, and he was like, “You’re not symptomatic. Your blood work looks really good. I think it’s probably stage 1 or stage 2. We’ll get your PET scan next Friday, and then you’ll come back and meet with me again, and we’ll get a plan.” He told me that he would not call me unless it was bad news.

I was the only one who knew that if he called, it was going to be bad news. Nobody else knew that. I was by myself that day because I had a PET scan, so I couldn’t be around my children. My husband’s taking them out to keep them away from my radioactive self. I get a call while I’m in the shower. I miss it, of course. It’s my doctor. He leaves me a voicemail, and he’s like, “Hey, give me a call back. I want to talk to you about your PET scan results.” I was like, Oh, crap. I immediately called back, and it was after 5:00. I don’t get him. I’m like, Oh my gosh, I’m gonna have to wait till Monday to know. I was trying to talk myself into… maybe he just wanted to tell me, “Stage 1, like you’re good.” But I knew he had said, “If I call, it’s probably just because it’s a little bit more serious.”

On Monday, a scheduler called me first, and they were like, “We’re going to move your appointment from Tuesday to Thursday.” I was like, “Why?” She said, “Well, insurance hasn’t approved your treatment yet.” I was like, “My treatment? I’m just supposed to meet with the doctor.” She was like, “No, no, no, you’re starting infusions on Thursday.” I was like, “Wait, what? What are you talking about?” She was like, “I think Dr. Lopez is going to call you soon.”

He called me shortly after, and he was like, “Hey, I just want to let you know. The PET scan came back. It is stage 4.” And he was like, “But blood cancer is different from tumor cancer.” He immediately told me that information. For anyone that doesn’t know, when you hear stage 4 lung cancer, that’s very different from lymphoma stage 4. That just means that there are lymph nodes that have the active cancer in them on both sides of the diaphragm. That’s stage 3. Stage 4 is also in somewhere other than a lymph node. I had a spot on my mediastinum and also a spot in my breast, which were not lymph nodes, and then a spot behind my abdomen.

He told me that, and he said, “The treatment changes only slightly. There’s one different chemo that we use from 1 and 2 to 3 and 4. The prognosis is still really good, almost the same. It hardly changes.” I had that information right away. I was like, “Okay, so this is different.” I tell my family, and they’re all still like, “Stage 4…” And I’m like, “No, no, no, listen.”

I tried to give the analogy — I just made this analogy up — and then I told my doctor, and he was like, “That’s actually really good. I’m going to use that.” I told my husband, “Think about a candle on a table, and you pour a bucket of water on the candle. The candle is going to go out. Now you fill the whole table with candles, and you pour the same bucket onto the table with multiple candles. All those candles are still going to go out. That’s kind of how the treatment is working. The chemo is going to go to all of the cancer just as efficiently as it would to one spot, stage 1, stage 2.”

He was like, “Okay, it makes me feel a little bit better.” Being super informed right away did kind of make that feel better. But it still did feel like, Oof, it’s kind of a little bit scarier than what we thought it was going to be. It just kind of felt like things kept happening like that, where we were like, Okay, we think it might just be this. And then it was like, Actually, it’s this. But we are still positive. We’re still hopeful. Treatment’s still going to be really good. I’m thankful that my doctor has the personality that he does. I told him from the get-go, “I am a hypochondriac and medically anxious, so you’re gonna have to give me all the information. You’re going to have to give it to me straight. No beating around the bush. No softening things. I want to know everything.” He was like, “Okay, sounds good.” And he has done that throughout.

Coping with hair loss and finding confidence

If you had told me, probably a year ago, that I was going to lose all my hair, I probably would have absolutely lost it, freaked out, just because it’s all I’ve always had. The long blond hair. It’s kind of been like, if someone didn’t know me, they would say, “Oh, the girl over there with the long blond hair.” You see me in a supermarket, you know it’s me for sure.

The doctor told me the first time we met that chemo was the treatment for lymphoma, no matter what stage, and that I would lose my hair because of one of the chemos. That’s just what it does. The “Red Devil” — I can’t remember the proper name for it at the moment. “That’s one of your chemos, and you will for sure lose your hair.” I asked him about cold capping, and he said, “You can do it. It’s not super successful. It’s not super great for lymphoma, especially with the breast presentation.” I had a higher likelihood of central nervous system involvement. So there was a treatment that needed to go all the way through, the whole body. He said it extends treatment, and it’s really expensive, not covered by insurance. I was like, “Okay, that’s fine, no worries.”

I was prepping myself from the very beginning, but something that actually helped me be okay with the fact that I was going to lose my hair — a lot more so than I thought I would have been — I watched The Great British Baking Show. Have you ever watched that? This season, the winner had alopecia, and she was open about that throughout the show. So she’s bald as well, doesn’t wear wigs or anything. She talked about that early on in the season. She said she used to wear wigs, and she doesn’t anymore. She’s really found her own style, confidence, and beauty. She was a med student on this baking show. Really successful, really good. I was just like, Okay, she has found the confidence to do this, and she looks wonderful. She’s unique, and she’s rocking it. Watching her prepped me. I was like, “If Jasmine can do it, I can do it.”

I was still a little emotional when I cut my hair because it’s always been really long. It’s really short. I don’t think it’s been that short since I was a little kid, and it was growing from my head for the first time. Shaving it obviously was a little emotional. My husband was shaving it, and he was like, “I’ve never seen your scalp.” And I was like, “I’ve never seen my scalp.” I was born with more hair than this. So it definitely was shocking and emotional. Sometimes I still forget that I don’t have hair, and I’ll see myself, and I’m like, Whoa, that’s me. I’m bald.

People are really kind about it and tell me, “You have a smooth head, like that looks pretty good.” Sometimes little kids will look at me, and I can tell they’re like, What’s going on there? And I just smile at them. I know that they just don’t know any different. It doesn’t bother me. It is a reminder for sure that I don’t have hair anymore. Making jokes out of it as well helps. I don’t know if you saw that video, just me being silly. But it definitely has helped me process losing it. I have a wig too, which I can wear sometimes. That was gifted to me by a really good friend. I’m thankful to have been prepped and to have different ways to make me feel best in my body, how it is right now, and to feel confident if I need them.

Parenting through cancer: navigating my diagnosis with my kids

My two-and-a-half-year-old would always play with my hair when I would hold him. He does the same thing with his own hair. He’ll play with it as he falls asleep. It’s always how we know that he’s getting tired. But when I would hold him, he would play with my hair and just kind of pull it and take the really long piece. He loved to brush it. He thought that was the most fun thing ever. So we were really nervous that he was going to look at me like, Oh my gosh, who is that?

We let him watch. He was with my parents. Both my kids were there when my husband shaved it. And when I cut it too, I thought, Oh no, he’s not gonna like that. Big change. And I think his response was, “Oh, mommy, you look cute.” He’s just the sweetest thing ever. Everyone was there. He got to see it being cut. I think that helped him to be like, Okay, I see it actually falling off. Mom’s getting a haircut. It put things in place for him.

When we actually shaved it, he was with my parents, and I put a hat on after it was done. So when he saw me for the first time, it wasn’t just a stark difference. Then he kind of noticed. He was like, “Mommy, where’s your hair?” I said, “Oh, well, buddy, I’m taking some medicine. And it made it all fall out.” He was like, “What? Where is it?” And I said, “It’s in the trash.” And he was like, “Oh, is it going to come back?” I was like, “Someday. Yes.” He said, “Can I see?” I was like, “Okay, sure.” I took the hat off, and I said, “Do you want to touch my head?” He was like, “Yeah.” And he just kind of rubbed. I was like, “Isn’t that so silly?” He was like, “Yeah.” And then that was it.

He didn’t talk about it anymore until I got a wig. I came home with a wig on, and he goes, “Are you a different mommy?” I was like, “No, the same mommy, just different hair.” He was like, “Your hair came back.” I said, “No, buddy, it’s a wig.” I took it off and showed him, and he said, “Oh, so pretty.” Anytime I put the wig on and come out, “Oh, mommy, you look so cute.” He has handled it beautifully. Better than I could have ever imagined. We were really nervous about that. One of my friends is a child life specialist, and she was like, “I need to talk to him. If there’s anything you want me to explain to him or talk to him about, let me know.” I was like, “Yeah, we might need to do that, especially with this big physical change that he can see because he can’t tell otherwise that something’s going on with me.” But no, he handled that great.

My youngest… I think he looked at me kind of funny the first time. Then I smiled at him, and it was like, Okay, that’s it. We’re good. Same mom. My wig is a little darker than my natural hair, so I’m sure he was like, Oh, there you are. That’s what I think when I smile, they’re like, Those are my mom’s teeth. All right. Cool.

There is some sweetness to it because it is a good distraction all the time. Anytime I’m feeling down about what’s going on, I have a great reminder of happiness and joy and lightness. Kids keep things so upbeat, and they kind of keep you busy enough that a lot of times you’re not really thinking about it anyway. But there have been some moments where I have just compared my experience with my youngest this time to my experience with my oldest. I didn’t have anything taking me away from being a mom to a newborn or to an infant before. Now I’ve stayed away from them longer than I ever have before. I had to stop my breastfeeding experience because of chemo. I’ve had to do bottles, and that’s been really different.

My husband has been really great about taking things on. He said, “I hate that this is why we’re doing this. But I’m really thankful that I’ve gotten an attachment to our youngest, Shepherd, so much earlier than Harrison, our older son. He was so much more attached to you for so much longer.” I’ve kind of had a different experience with him, which has been really cool for me. And then my experience has given me some independence sooner than I would have had with my oldest. So there’s been some goodness to the hard as well.

I had to stop thinking, Oh, I’ll be so glad when treatment is over. I’ll be so glad when I’m on the other side of this. If I can just get to being cancer-free, then I can start enjoying life again. I was thinking about that. I was like, Okay, so that’ll be next May or June if we stay on track with everything. I have a one-year-old and a three-year-old. I will have wished away the whole first year of my youngest son’s life. So again, they are really keeping me in that mindset of I still need to enjoy every single day, despite the hard stuff.

There are days when I’m tired and anxious, and I need to just kind of step away and take a moment. Luckily, I have a support system to be able to do so. But most of the time it’s a reframe. It’s just this constant flipping in my mind of feeling the anxiety, feeling the sadness from it, but then remembering, Look what you have right in front of you. Don’t let these other things that are going on take over the good parts of life that are happening right now, too. My husband even said at one point, “I hate that this is happening, but why did it have to happen when we have small children?” I was thinking the same. Why couldn’t it have happened before we had kids? And then I was like, Well, you know, now that I say that though, they make every day so much better, no matter how I’m feeling. Maybe if this was going to happen — of course, again, thank God it’s happening at this time because I do have these constant little smiles at me all the time. You can’t be upset when these little faces are smiling back at you. It’s been different, but so good to be able to have this experience and to be able to treasure them even more. Once you hear those words, cancer, you’re looking at things so differently.

Finding silver linings in adversity

For sure, getting out of the house with both of them helps. Even when I am feeling really tired, leaving the house helps with that a lot. Having family so close is really helpful, even just to get in a different space with another person, with the kids. It’s like, Okay, I’m remembering that we can be normal while these things are happening, too. My husband can be home anytime I am not feeling well. That’s really helpful too, to be able to know that I have certain days where if I need extra rest, I can take it. But for the most part, it’s like, Okay, this is my sweet spot to be with them.

I think prepping for the holidays, whether it be Halloween, Thanksgiving, or Christmas, has really helped as well to have those moments. I want to make this really magical for them. I want to make things exciting and happy for them. Filming my experience and sharing that has been really helpful, too, to just kind of talk about it to make it less scary for other people. I know it can be really daunting. Before I had my first PET scan, I was like, Oh, that sounds terrifying. I’m going to be in one of those little tubes and being enclosed. Things just seem so much more daunting when you don’t know anything about them. So that’s been really helpful too, to have that outlet. I’ve had so many people say things back to me like encouragement and say that, “I was just diagnosed and watching your videos, I hope that I can stay positive as well. Thank you for sharing. You gave me the courage to go and get something checked out.” Even though I have little kids, just things like that… just little reminders that when I am feeling positive and happy and absorbing those moments, it really is making a difference.

I think I gave you the little phrase, “There’s nothing that I can’t handle.” I think that I have learned that over this amount of time because I think I downplay who I am and what I do a lot of the time. Oh, I’m just a mom. Oh, I don’t work. I just stay home. Or I just help my husband with his business. I think dealing with something like this and just thinking, Okay, this is what happened. I’m going to face it head-on and keep being positive. I didn’t realize that I was doing something kind of different here or that I was taking such a positive take on it. When I first heard about cancer and realized what kind it was and how treatable it was, I was like, Okay, there are so many people dealing with heavier things. Things could be so much worse. I think I try to always look at things like that anyway.

Even after my first chemo, I didn’t feel super bad afterward. I was tired, but I was thinking, Okay, that was pretty smooth. I can do this for sure. But then I had friends and family members being like, “You have cancer. Like, this is a big deal.” Not everyone will experience that. I remember my husband telling me that after I had a C-section, he was like, “You are a lot tougher than you give yourself credit for, mentally, physically.” I’m a small, petite woman. I’m not super muscular or strong or anything like that. I don’t think of myself as tough. But I have realized, especially in the past few months, that I am pretty tough and there is a lot that I can take and a lot that I can handle. If I can go through this, there’s absolutely nothing that I can’t handle past that, which is a good reminder.

Sometimes it’s the little things in life that get to you, and then a big thing happens and kind of gives you perspective on, Okay, why did I get so upset in traffic? Or why did I let that sleepless night with my kids make me have a bad day the next day? That’s nothing. I faced this, now everything else seems so small. I’m really grateful to have that perspective now. I’m more resilient than I thought. I hate for anybody to have that tested with adversity, but I feel like that’s the only way you really know how strong you are, is for your strength to be put to the test.

I’ve learned how much people care about me, which is a really unique thing to get to actually hear from people. Once I was diagnosed and started sharing my experience, people reached out. I had a teacher that I had in high school reach out and tell me, “You were always one of the most positive students that I’ve had.” It’s really cool to be able to hear what people think about you. It’s kind of reminded me to do the same for others. If you feel like you want to tell somebody something about what they mean to you, do it, because you never know how it will make them feel.

Looking to the future: one day at a time

That was hard for me, and I felt that was going to be the hardest part: to think about things a few months out or even to think about life after cancer. I feel like I’m always going to be thinking, Is it back? Is something else going on? But I’ve heard a lot of people who have also had cancer or dealt with a large adversity: take it a day at a time. And I think that is the best advice that you could receive. Take it a day at a time, and when you take it a day at a time, it allows you to be more present in that day because you’re not thinking about the future.

So that’s really just a day at a time — sometimes a week at a time, if I know what’s going to happen a week from now. But I try not to push too far forward because I feel like I can kind of get a little bit too in my head if I think about the hospital days that are coming up, or if I try to just digest everything that’s going to happen. But if I take it a day at a time, I mean, I can handle that for sure. One, just one little day at a time. No big deal.

Advice for patients and loved ones

For anyone going through something similar or anyone loving someone who is going through something similar, there are no dumb questions. Getting a second opinion is great. Lean on people who love you and whom you trust. And if you are someone loving someone else going through something like that, show up and be present and show people that you care, even if you feel awkward or if you don’t know what to say. You don’t have to say anything. Just being there is so special and helps people know that they can do anything and they can handle anything.

Thank you for sharing your story, Anna!

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