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“Never Give Up, Never Surrender”: How Cora Finds Hope After Six Colorectal Cancer Relapses

“Never Give Up, Never Surrender”: How Cora Finds Hope After Six Colorectal Cancer Relapses

Cora was a therapist who supported kids and families. During graduate school, she started feeling fatigued. She initially assumed it was burnout from years in trauma-heavy environments. In 2018, after blood and mucus appeared in her stool, a colonoscopy revealed colorectal cancer.

Interviewed by: Ali Wolf
Edited by: Katrina Villareal

At first, Cora was told it was stage 2 colon cancer. She built a mental picture in which cancer would be just a blip in an otherwise thriving life and career. She completed chemotherapy, chemoradiation, and major surgery with a temporary ileostomy over the course of a year and rang the bell in celebration. She felt better than she had in years.

Cora V. stage 4 colorectal cancer

But later, imaging confirmed the disease had spread, and a stage 4 colorectal cancer diagnosis upended her plans. Once again, Cora stepped away from a career she loved and navigated multiple recurrences. She moved her care to MD Anderson for liver surgeries and ongoing treatment.

Cora’s background in mental health deeply colors how she copes with stage 4 colorectal cancer. She understands shock, delayed processing of trauma, and the way patients often cannot fully process what is happening while still in crisis. During her relapses, Cora focused on finding the best treatment plan and surviving each step. Isolation during the COVID pandemic while on second-line chemotherapy triggered some of Cora’s hardest mental health moments.

Cora’s cancer has come back six times, but she remains hopeful. She says her dogs have helped her get outside for sunlight and movement. Also, a group called the Project Athena Foundation opened her to a community of people who understood medical trauma, and even invited her back into marathon training after a devastating immunotherapy setback. She completed 10 miles while still sick and swollen from steroids, deciding that was “good enough” for someone living with cancer.

Cora says cancer slowed her down, but has helped her prioritize relationships and memories over career milestones. She’s guided by her mother’s mantra of “one foot in front of the other” and her late uncle’s advice of “never give up, never surrender.” She continues to move through uncertainty, but remains hopeful because of evolving treatments, such as ctDNA testing.

Watch Cora’s video or read the interview transcript below to know more about her story:

  • Cora’s long-standing love for kids and work as a children’s therapist shaped how she understood mental health, trauma, and eventually her own cancer experience
  • Early symptoms like fatigue and later blood and mucus in her stool were initially attributed to burnout or IBS
  •  Her perspective shifted from seeing cancer as a brief interruption to recognizing the reality of recurrent stage 4 disease and re-centering life around treatment, support, and presence
  •  Isolation during harsh second-line chemotherapy in the COVID  pandemic underscored how essential meaningful support systems are, whether through family, pets, or communities like Project Athena
  •  Over time, Cora transformed from a career-focused professional into someone who actively prioritizes memories, relationships, and legacy, taking “one foot in front of the other” as a daily practice
  • Patients often need time, tools, and community to process trauma; survival is not just physical but emotional, and no one should feel they have to carry it alone

  • Name: Cora V.
  • Age at Diagnosis:
    • 37
  • Diagnosis:
    • Colorectal Cancer
  • Staging:
    • Stage 4
  • Symptoms:
    • Fatigue
    • Unintentional weight loss
    • Blood and mucus in stool
  • Treatments:
    • Chemotherapy
    • Chemoradiation
    • Surgeries: temporary ileostomy and reversal, liver surgeries and ablation
Cora V. stage 4 colorectal cancer
Cora V. stage 4 colorectal cancer
Cora V. stage 4 colorectal cancer
Cora V. stage 4 colorectal cancer
Cora V. stage 4 colorectal cancer
Cora V. stage 4 colorectal cancer

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.



Introduction and Identity as an Aunt and Therapist

My name is Cora, and I have stage 4 colorectal cancer, and I live in Oklahoma City, Oklahoma.

I am, gosh, it is a hard thing to kind of start. I think first of all, I would identify myself as an auntie. That has been my role that I’ve loved the most in my life. I have been somebody whose primary focus in life has been my career and my family, but not starting my own family. So I didn’t get married and have my own kids. Rather, I worked with kids, and I have all of these siblings that I love.

I think that my love for kids has really directed my life a lot in a lot of ways, and that’s what keeps me going, even in this journey with cancer. I worked all kinds of different jobs, and I went through undergrad, and ultimately, I ended up working in a child support court doing mediation hearings. That led me on a path toward more social work and getting into being a therapist, and I was a children’s therapist. I’m still licensed as a therapist; I just have not been practicing for a couple of years because of my health issues and wanting to focus on that. So I think most of my life is directed towards helping kids and focusing on, I hope, building a little bit of a better future for kids.

Family Mental Health History and Early Exposure

Mental health was something that I hadn’t necessarily struggled with personally prior to my diagnosis, but I had seen my father struggle with it. He was diagnosed with PTSD while I was in grad school, and we were able to talk some about that and his experience with PTSD. I think, in general, seeing different people in my family struggle with mental health, but not necessarily get any resources or have that language as I was growing up, was impactful.

Honoring Patients and Reframing the Therapist Role

I think that one of the things about mental health and being in that field is that people often come to you thinking that you’re the one who’s going to give them the answers or that you are in some way doing them a favor. As a therapist, one of the things that I focused on was trying to bridge that into just a communal relationship and working together. Really, as a therapist, their sharing these kinds of things with me has been one of the greatest honors of my life.

Even going into my diagnosis, prior to that, I had worked with kids with chronic illness and some adults with chronic illness. You have this intellectual idea of what it looks like to have a chronic illness, or what it looks like to experience depression or anxiety, and then it’s very different when you’re in it. I think I’m so thankful for all of the different people who have exposed themselves to mental health, who have processed their lives and their griefs.

How Mental Health Training Prepared Her for Cancer

All of that study prepared me in some ways to be able to survive this diagnosis mentally and emotionally. I think that’s what I took from those kids as well. I worked with kids who had a lot of trauma for the most part, and you just see them survive, and there’s nothing better than that. Seeing them survive and make it through that kind of thing means that they’re a big part of that story for me now, even though I don’t work with them anymore.

Early Fatigue and First Symptoms in Grad School

It really started — and it ties in a little bit to the mental health stories — when I was in graduate school. I had always been somebody who worked more than 40 hours a week, had gone to school and worked, and suddenly I was so tired that I was coming home and not eating and going to sleep. I was losing weight unintentionally because of that, because I was just sleeping rather than eating. So my fatigue was really the first thing that I noticed. I thought it was probably burnout because I had been in this heavy trauma environment for years. As I switched to different jobs, that fatigue kept following me, and that’s what I noticed first.

Ongoing Medical Workup and December 2018 Colonoscopy

It was years, and I went through a process with my doctor of trying different things, even treatment for depression, even though I didn’t have any of the other symptoms besides fatigue. I had thyroid testing constantly, just different things, and everything came back normal. Then, in December of 2018, I had blood and mucus that I was passing, and that was a big worry immediately.

We all thought it was probably IBS (irritable bowel syndrome) or something like that. I ended up getting scheduled for a colonoscopy. When they woke me up from the colonoscopy, my mom was there with me, and the doctor walked in and said he was really surprised, but it looked like I had cancer. He gave us a picture of the tumor and said they couldn’t say 100% that it was cancer until the biopsy came back. That was a Thursday. By Monday, I was in for a different procedure to test staging, looking at things, talking to an oncologist, and the biopsy was back, confirming it was what we thought at that time was stage 2 colon cancer.

Shock of Initial Cancer Diagnosis

I think for the most part, it was just shock. I don’t even think I cried. My mom, I don’t think, cried right then. I think we were all in a lot of shock. My stepdad picked us up from the hospital, and when we got in the car, he asked how things went, and I said, “I have cancer.” He thought I was joking because we were very calm and in shock in that moment.

But then, when I got home, I cried for probably about 24 hours.

Waiting for Staging and Facing Anxiety About Stage 4

A couple of days later, the oncologist confirmed it was cancer. I had an ultrasound that day that confirmed it hadn’t broken through the colon wall yet, which is part of the staging. We were still waiting on CT scans to see if it had spread or not. I knew at that point that because of my age and that kind of thing, it was more likely I was going to be diagnosed as a stage 4 patient.

Typically, when you’re getting symptoms, a lot of times you’re already at that stage of having metastasized. I was just a mess of anxiety. I was supposed to start private practice the day after my diagnosis. I had left the hospital where I was working, and I had keys to my new office. I was going to start on Thursday, and on Friday, I was signing into my new office space. Instead, it was a morning of texting people. I couldn’t call anybody, and I feel bad about that. It’s hard to break that kind of news by text, but I couldn’t even say it for probably a long time afterwards.

TikTok, Trauma Processing, and Protecting Her Mom

Sometimes, the reason I started a TikTok channel was to analyze my own grief from that psychology perspective. I haven’t wanted to release that because it is painful for people like my family members. As you probably know, as a mom seeing your little kid go through it, my mom is the person I want to protect most in that. I started making these TikToks, analyzing some of that stuff.

That initial phase is the same kind of thing I talk to people about with trauma. We don’t go to somebody immediately and start processing trauma right when it’s happening or as it’s happening. We don’t send therapists into the battlefield to say, “You just saw your friend get shot. Is that hard?” We wait because it’s unsafe. Our bodies are unsafe. Our minds are unsafe. One of my aunts who had cancer told me it’s like you’re walking around with an octopus on your face all the time, and you have to peel back a leg every once in a while to peek out. You’re in that space of trauma psychologically, and it just takes time to move to a different step of processing that for most people.

From Stage 2 Mindset to Stage 4 Reality

No, actually, I got diagnosed initially as stage 2. My mindset then was like, this isn’t — I have a career I love. Cancer is going to be this little blip in my life. My whole goal was to put it behind me. It wasn’t until I got diagnosed with stage 4 cancer that I started posting on TikTok and recording some of my grief.

Really, that whole time I was stage 2, to a certain extent, people would say, “Well, it’s always cancer,” and I would say, “No.” I had a year-long treatment plan. That plan was supposed to be over, and I was supposed to have an 8% chance of recurrence or something. My mindset was on the future at that point. Later on, the diagnosis of stage 4 cancer changed that perspective.

Missed Liver Spots and Transition to Stage 4

It wasn’t that my cancer was clearly gone. In my first whole treatment cycle, that first year, we thought I was stage 2. There are always these little spots on people’s scans that are small, and radiologists sometimes note them, and sometimes they don’t. About halfway through my first treatment plan, a radiologist noted a spot on my liver for the first time, but my oncologist said it had been there before. None of those spots grew, and we really thought they were just incidental.

After I had been cleared of treatment and we thought I was good, we were monitoring me really closely because of those spots on my liver and lungs. I had started a new job at a treatment facility and was really excited. Within a couple of weeks, the oncologist was calling me saying, “Now these spots are growing,” and that they really had thought it wasn’t cancer — and it was.

First Treatment Plan: Chemo, Radiation, and Ileostomy

I had chemo and then radiation with an oral chemo pill for a month. Then I had a major open surgery with a temporary ileostomy. I had that for three months and then had it reversed. It was almost exactly a year from the time I was diagnosed, going through all of those steps, to the time that I had my ileostomy reversed.

Ringing the Bell and Brief Time Cancer-Free

I rang the bell, and we celebrated. I had no evidence of disease (NED). I really felt good again. I felt better than I had in years right about that summer. It was the summer that I finished everything.

By the end of summer and early fall, I was feeling bad again and fatigued again. It was about six months after we celebrated me being cancer-free and my ileostomy reversal and all that stuff before the stage 4 cancer came up.

Facing Stage 4 Statistics and Focusing on Treatment

With the stage 4 cancer, one of the situations I knew was that there were some bad statistics about stage 4 colorectal cancer out there. I didn’t want to hear any statistics. I just wanted to focus on the best treatment plan and do the best I could to survive that treatment plan.

It was a really dark time. It was a lot of crying. It was a lot of friends and family around, talking to my boss, having to say goodbye to all these kids at work again and leaving that. It was a time of grief. But still, at that point, my mind was set on living and this still being temporary. It was almost like that shock all over again — I’m shocked, and now I’m going to cry a lot, but my mind is going to be focused on the future and not the potential that I won’t recover from this.

Second-Line Chemo During COVID and Isolation

Second-line chemo was really difficult compared to the first line, and I got very, very sick from it. I don’t think I was nervous about doing chemo again. I did have a lot of weird side effects on my first round of chemo, but out of all the things I went through, it was the most manageable of the three-pronged treatment. I would rather have had the chemo again over the radiation or surgery from that first time.

I went into the chemo thinking, “Okay, I did this once before; it’s a different type of chemo. I’m going to be annoyed with having to keep this bag on me for a couple of days, but I’m going to survive it.” And I did, but it definitely took a much harder toll on me.

We were in the middle of COVID at that time, and I had to go to chemo by myself, which was not something I had ever done before. I always had a whole group of people around me. Then I had to come home and be by myself because everybody was scared of getting me sick, because I was so sick on that particular chemo. I think that’s where I started struggling with actual mental health.

We think we can build ourselves up and hold ourselves up through this kind of thing, especially if you’ve been independent your whole life and you’re in your mid-30s. You think, “I’m going to be fine,” and then all of a sudden, I was entirely isolated. I had people on the phone and different things, but it just wasn’t the same, and that second round of chemo was really difficult.

Dogs as Emotional and Physical Support

Yes, I actually had two dogs through all of my chemo and treatment. We lost one about a year ago. My dogs were always the ones who kept me going, not just emotionally, giving me some of what I needed, but also physically. I have to walk them every day. I have to go out and get sunshine every day. They keep me interested in the world. Even when I’m having a very bad physical day, I can force myself to do the things I need to be doing for myself because of them. I’ve really enjoyed having them, and during COVID, they were a very nice blessing to have.

Multiple Recurrences and Care at MD Anderson

I am on my fifth recurrence currently. This will be my sixth time having the tumor come back, having a recurrence, and asking, “What’s our treatment plan?” I switched over to MD Anderson when I became stage 4 to have surgery, instead of going to my local hospital for the liver surgeries. I’ve been treated there ever since.

I go there next week to find out what we’ll do next. Overall, I’ve made it through needing treatment five times, and now I’m at my sixth recurrence.

ctDNA Testing and Invisible Tumors

Some of the things that keep me hopeful are new discoveries. Most recently, I found out that they have ctDNA tests for colorectal cancer. I got a positive ctDNA test in October, but my CT scan was clear; they can’t find a tumor.

What the ctDNA does, from what I understand, is it looks for cells that match the genetic DNA of my original tumor. They can tell that a tumor is setting up somewhere in my body; they just can’t find it yet. Right now, I don’t know where it is. That’s the second time I’ve had a positive ctDNA test. The first time, it ended up showing up in my liver at my next CT scan — or maybe it was the third time; it’s hard to remember — but it ended up showing on my CT scan at my next appointment, and I had another liver surgery and ablation.

Six Years of Stage 4 and Hope from New Treatments

I think one of the things is that I’ve been lucky to have all of these ups and downs, but I’ve been lucky to have lived through six years of this. I had an ex and friend — the same person, somebody I had dated briefly — who also got diagnosed with stage 4 colorectal cancer about a year after I did. He ended up passing away from that cancer. I’ve been really lucky to have made it through six years of colon cancer.

Through those six years, many things have been developed in the medical field. The ctDNA test has been developed. When I was originally stage 4, the plan was for me to be on chemo for the rest of my life. I took a break from that because I didn’t know if I was going to make that choice to be on chemo for life. Just in that time period of taking a break, new data came out, new studies came out, and my oncologists changed their minds and said I didn’t need chemo for life. We could wait and do surgery sometimes or other types of treatment.

Staying Focused on Forward Motion

I know there are people out there working toward this goal. They don’t necessarily have me individually in mind, but they’re doing so much good work. I keep myself focused on all of these things that people are doing and try to hold myself to that standard in my own life. My mom says “one foot in front of the other” a lot when we talk about my story, so I’m just going to keep putting the next step in front of me. I’m here, and I feel like that’s part of my obligation as a human and part of this community.

Building Support Systems and Project Athena

For me, one of my takeaways in mental health and dealing with really hard parts of life is that you have to reach out and find a support system. I was lucky enough to already have a really great support system, but I also had to keep looking for new resources as things progressed.

My family and loved ones have their own grief and denial and things that they process. As much as I would love to drag them through that, they have to go through it on their own. I can’t do it for them. Another really helpful thing I found was signing up for a group called the Project Athena Foundation. They do outdoor training for people who have survived medical trauma. There is this group of people — trainers and different people — who have been through all kinds of things. That’s who I turned to this summer.

I got kicked off an immunotherapy trial because my body couldn’t handle it. It was really devastating because we were hopeful it might give me some time cancer-free. The first person I texted was the coach of that group: “Can you just send me some crappy athletic story about going forward through loss? Even if it’s cheesy, even if it’s stupid, that’s what I need this morning, because I know you all have gone through that kind of thing.”

Marathon Training, Immunotherapy Setback, and Ten Miles

Rather than a cheesy line or poster, what they sent me was that I was going to be signed back up to rejoin them on the marathon I couldn’t join because of the immunotherapy trial. Instead, it was an invitation to California to go on the marathon I had been pulled from because of my medical condition. I thought, “Wait, I need a minute to process the possibility of that right now.” But it was still that mindset of, “Okay, you got kicked off that yesterday. Today, you can go back to marathon training.”

I had trained twice for this marathon, and both years, my cancer came back right at the end. I went to California super sick. I’m still swollen from steroids because my kidneys and liver kind of went into failure from the immunotherapy. I went with my team. I did 10 miles before I started vomiting everywhere, and they had to take me back to the hotel for a couple of hours. Then I was able to rejoin them at the finish line. Honestly, 10 miles is good enough for somebody dealing with cancer at that point.

Shifts in Priorities, Memories, and Legacy

I do notice a change in myself. One of the biggest changes is that the career-driven, forward-thinking mindset I had prior to my cancer diagnosis, as much as it was a good thing, might have shortchanged some of my relationships. Cancer has slowed me down in ways that have been helpful when it comes to making memories.

I have so many pictures. My friends and family now know that if they go somewhere with me, I’m going to make them do something really silly for a photo shoot. I do that for me, but also for them. I never thought about leaving them behind and them having to grieve me. Now I think about what I’m going to leave them, and that’s been impactful in a really wonderful way in my life.

“Never Give Up, Never Surrender” and Facing Mortality

I think one of the ways I deal with my own death sometimes is by thinking about fun questions I would ask my loved ones on the other side. I have this really weird, quirky uncle who gave me a book right before he passed away about us being aliens or something. It was this very quirky little book, out of nowhere. He would always say, “Never give up, never surrender.”

That quote sticks with me because of him and because of his giving me that book at a difficult time. I think that’s really the mindset you have to take with cancer. It’s a lot of different choices and different kinds of things, but you just can’t give up and you can’t surrender to it.


Cora V. stage 4 colorectal cancer
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Stage 4 Bowel Cancer to No Evidence of Disease: Nina’s Honest Experience

Stage 4 Bowel Cancer to No Evidence of Disease: Nina’s Honest Experience

When Nina first began noticing changes in her body, she never imagined they would lead to a stage 4 bowel cancer experience. A busy mom of three in Leeds, Yorkshire, England, and a longtime hairdresser, Nina had always seen herself as “the healthy one.” She was active, into Pilates, and focused on holistic wellness. For years, her digestive issues were labeled as irritable bowel syndrome (IBS), even as her discomfort escalated and new symptoms appeared, including skin flare-ups and blood and mucus in her stool. In the middle of the COVID lockdown, she pushed through the pain, assuming it was just another rough patch.

Interviewed by: Carly Knowlton

Everything changed around Mother’s Day 2021, when severe, localized pain and dark stool led to an urgent trip to the accident and emergency (A&E) department. Imaging revealed a mass in her bowel that had spread to her ovaries and suspicious spots elsewhere, leading to a stage 4 bowel cancer diagnosis. Nina underwent major surgery to remove part of her bowel, both ovaries, and a section of her bladder. She was placed on chemotherapy as “mop-up” treatment, but the treatment regimen hit her hard. She lost a significant amount of weight, needed total parenteral nutrition (TPN) and fluids, and scans then showed new liver spots. One doctor told her the liver disease was inoperable and brought up palliative care.

Nina H. stage 4 bowel cancer

Nina refused to accept that as the end of her stage 4 bowel cancer story. Anchored by her three children and her belief that it wasn’t her time, she focused on everything within her control — nutrition, movement, supplements, prayer, and making keepsakes for her kids in case she couldn’t be there in the future. Her oncologist adjusted her chemotherapy schedule, and follow-up scans showed the liver lesions shrinking. Surgery later revealed those lesions had turned into dead tissue, with no active cancer remaining, leading to a discussion of having no evidence of disease that felt surreal and almost too fragile to celebrate.

Today, Nina’s experience is about more than clear scans. She talks openly about the anxiety, hypervigilance, and survivor’s guilt that followed treatment, including becoming more of a hermit, fearing certain foods and products, and feeling like she has to make every moment count as a parent. Meditation, Pilates, daily movement, and making her own skincare have become part of her ongoing healing. Nina’s stage 4 bowel cancer experience may be uniquely her own, but her message is universal: hold on to hope, listen to your gut, and remember that you are not a number.

Watch Nina’s video or read the edited transcript below to find out more about her experience:

  • Early symptoms of bowel cancer can be mistaken for IBS, so persistent red flags like blood and mucus in stool or severe new pain should be taken seriously and re-evaluated
  • A “no” from one clinician, including talk of palliative care only, doesn’t have to be the end of the story, seek a second opinion
  • Asking questions and revisiting treatment options can sometimes open new paths
  • Nina describes a meaningful transformation from constantly rushing and “pushing herself” to slowing down, honoring her limits, and prioritizing peace, presence, and time with her children
  • Survivorship brings complex emotions, including anxiety and survivor’s guilt; getting support, sharing honestly, and finding a community of people who understand can make that phase more manageable
  • Every person and every cancer experience is different; you are not a statistic, and there is value in focusing on hopeful stories as well as medical care.

  • Name: Nina H.
  • Age at Diagnosis:
    • 38
  • Diagnosis:
    • Bowel Cancer
  • Staging:
    • Stage 4 (Metastatic)
  • Symptoms:
    • Longstanding IBS-like symptoms
    • Skin flare-ups
    • Blood and mucus in stool
    • Dark stool
  • Treatments:
    • Surgeries: bowel surgery, removal of both ovaries, partial bladder resection, liver surgery with removal of two liver sections
    • Chemotherapy​​
Nina H. stage 4 bowel cancer
Nina H. stage 4 bowel cancer
Nina H. stage 4 bowel cancer
Nina H. stage 4 bowel cancer
Nina H. stage 4 bowel cancer
Nina H. stage 4 bowel cancer

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.



Meet Nina: An Active Mom, Hairdresser, Pilates Lover

I’m Nina. I live in Leeds in England. I was diagnosed with stage 4 bowel cancer in 2021.

I have three kids, so they take up a lot of my time. I’m very passionate about my family time and all those kinds of things. I’m very into my Pilates and holistic side of things. I am a hairdresser by trade as well, so that’s what I did before. I’m back doing that part-time.

First Red Flags Before Diagnosis

I suffered with IBS for years, or what they thought was IBS. It was during the COVID lockdown where things progressively got worse, to the point where the discomfort was becoming more and more. I was having skin flare-ups and everything. Then I started having blood and mucus in my stools.

I contacted the doctors and they were like, “Come in.” It was lockdown, so it was difficult to get an appointment. I got in for some tests, but I never asked what they were testing me for or what tests they were doing. When the results came back and everything was fine, they were just very much like, “Oh, it’s just IBS. Maybe cut out certain foods and see yourself what things are bothering you,” so not much help at that point.

Then things got a little bit better. I started cutting stuff out of my diet. I did the York Test to find out what I was allergic to and what I might be intolerant to, and I cut a load of stuff out of my diet. That was in the summer of 2020, mid-lockdown. By Christmas, things did get worse.

I woke up the day before Mother’s Day 2021 in severe pain, but I got myself through the day. I thought, “It’s just a bad spout; ignore it.” But the following morning, I was very concerned, because my stool was dark. The pain was horrendous. It was down one side.

Trip to A&E and Getting the Stage 4 Bowel Cancer Diagnosis

We thought it was best to phone 111 and see what they recommended. They told us to go to A&E, and that’s where it all started. While I was in, I thought I’d be out later on and that it’s fine and it’ll be nothing.

They scanned me and everything, and the doctors came to see me and they were like, “We think it’s a twisted ovary or something like that. We’re going to keep you overnight and do a few more tests in the morning.” That was fine. The following morning is when the doctors came to see me and said, “We’ve had a better look at your scan and you’ve got a mass on your bowel that’s spread. It looks like it’s gone to your ovaries, and you’ve got two other spots that we’re concerned about,” one on your liver and one in my chest.

They said, “We think it’s cancer and we need to get looking now and get you in.” Basically, they kept me in while they did all the other tests to see what everything was. It was confirmed that what was in the bowel was cancer, and they were certain that it had gone to my ovaries. The scans on my liver and chest all came back clear at that time.

They sent me in for an operation six weeks later. I went in for my operation. They removed part of my bowel. Luckily, they were able to put it back together and I didn’t have to have a bag. Then they took both ovaries just to make sure. While they were in, they did notice something on my bladder, so they had to take a little bit of my bladder too. But they felt like they did quite a good mop-up job and thought that was it.

First Chemotherapy Plan and Sudden Liver Metastases

They decided to put me on six sessions of chemo, three weeks apart, as a bit of a mop-up just in case. But that didn’t go to plan. I fell ill on the chemo, to a point where again I ended up being taken in. I’d lost a lot of weight, and they thought I had an obstruction.

They scanned me for that and had to keep me in. I was put on TPN and fluids because I couldn’t eat or drink. The scan revealed that I had two spots on my liver.

At this point, when the guy came to see me when I was in — again, it was COVID, so we didn’t have many people that were allowed to come in — the doctor came to see me and asked if my husband could come the next day to discuss the results. So you kind of know that there’s something.

The next day, he came and the doctor told us they’d seen these two spots that, in his eyes, weren’t operable. He basically just said that he’d get the palliative care team to come and see me.

Refusing to Accept Palliative-Only Care

From that point on, it was like, “Right, I’m not taking that as an answer. I’ve got three kids. I don’t think it’s my time. I’m a healthy eater. I’m going to up my game. I looked into every bit of food that I could possibly think of that would help me heal my body and fight the cancer.”

That was my aim: to get out of the hospital and just crack on with that. I was busy making things for the kids while I was in the hospital so they had something of mine. You sit there and think about things you might say to your kids at different stages of life. I was preparing myself for things to write down, to be able to give them if I wasn’t around. I’d probably say that was the darkest point of my journey, really.

After, when I did get out, when I put a bit of weight back on and was allowed back out, they were ready to decide whether to do the chemo again. They decided that my oncologist, who didn’t see me in hospital because it was somebody else, still thought the chemo was working. But he did change how he was administering it.

Adjusting Chemotherapy Regimen and Shrinking the Liver Tumors

Rather than just going in and having the drip and then having tablets for a week, I’d go in every two weeks for a drip and then I’d come home with another little drip on. Then we’d see how I went halfway through and scan me.

The liver bits had actually shrunk, so he was happy with that. They kept me on for the rest of the program, and they were hoping that if they’d shrunk enough, they’d be able to operate. At the end of it in the October, they left me for a few months just to heal, and then they scanned me and they were right — the lesions had shrunk and they were happy to operate. There didn’t seem to be any more spread anywhere else.

It was February 22nd when they decided to remove the bits from my liver. They were very shocked by what they found when they tested it. It was all dead tissue. There was no active cancer there. It had completely died. They were basically like, “Whatever you’re doing, keep on doing it.”

That’s what I’ve been doing since and all my scans have been clear. I’ve been very lucky. I do put it down to what they did, and I put it down to my diet and all my praying and crying. I did say at the very beginning, it wasn’t my time. It will be five years next year, but it does feel like it was only last week. I don’t think it will ever fully go.

Life Before Cancer: Extremely Active and “Didn’t Fit the Box”

I was a busy mum of three. I worked in hairdressing full-time. Because it happened after lockdown but before things were fully back to normal, I was a busy mum with three kids. I trained. I did silly winning competitions, like the mud races and all that. I loved all that. I weight trained. I was very active and very healthy but probably pushed myself a little bit too much.

It was a bit of a shock because I was a healthy eater, I trained, I worked out, and I was very active. I had three kids, so I was constantly running around after them. It was a shock because I didn’t put myself in that bracket. I think that’s what the doctors didn’t do at first. They thought, “She’s healthy. She eats well. She trains.” I never went on about being tired because I’m a mum of three. I’m always going to be tired.

I was a very active person. I was always quite a positive person beforehand, but I do think I took life a little bit for granted. One of the positives that has come out of this is it has made me look at life a bit better and slow down and appreciate the little things.

Telling the Kids and Parenting Through Chemo

We didn’t want to name it because I’d had some problems for years. We didn’t tell them it was anything. We didn’t say cancer. We didn’t want them to hear that word and be scared, so we kept it quiet. After my operation, I lived with my parents for six weeks while I healed, but the kids could come and see me. We tried to keep everything as normal as we could.

When chemo started and I fell poorly, I think it was because I was hiding it. Every time I felt bad, I didn’t want them to see me like that, so I was dealing with it on my own. Trying to feed myself and all that was hard. When palliative care came into it, we had to tell them the truth.

They’re quite strong characters, so they never asked us the worst. You don’t want them to ever go, “Are you going to die?” They didn’t ask that. I think that’s because my husband and I are quite positive people. We don’t look for the negative. We always look for that little silver lining, and I think that helped.

With it being lockdown, they never saw me in the hospital. They never saw me poorly in a hospital bed with tubes or anything like that, so I think that helped them. I have a good team around me. The family is great.

Side Effects of Chemotherapy

I think I did two or three the first time around, and then they changed it. It was either six or eight the second time around. I think it was six. My husband thinks it was eight. I can’t quite remember. I didn’t lose my hair, and again, I think that helped with the kids because my youngest one doesn’t think I had chemo. He’s like, “You didn’t lose your hair, Mummy.” I was like, “Mummy did.”

The sickness and the tiredness got worse with each round. But I think because I had such a healthy diet, I was always in the mindset of, after every chemo, I need to heal myself for the next one. I juiced. I did everything I possibly could so that the chemo would have another good go at doing what it needed to do.

I never want to feel like that again. I dealt with it, and I do feel like I dealt with it well, but I’d never want to go back there. I had this weird cold thing. I couldn’t touch certain things. I couldn’t touch knives and forks. I don’t know what the name of that is. I couldn’t drink anything below my body temperature; otherwise it would feel like it was locking my throat. Apart from those side effects, I was quite lucky.

Anxiety, Hypervigilance, and Becoming More of a Hermit

I’ve become a little bit of a hermit. I do lock myself away a bit because a lot of things do scare me now. I felt like I was so healthy beforehand and I would not have expected anything like that, so I don’t socialize as much as I used to.

I’m too scared to drink, even though I didn’t drink before. Going out and being in that social environment, I get quite anxious. Same with the kids: whatever they eat, whatever they drink, I’m very conscious. I make all my own skincare range because I’m too scared to put anything on my skin that I don’t know what’s in it, so I have become a little bit of a nervous wreck.

Each year, I have gotten better, and every time I get a clear result, it gets a little bit easier. I’m working a bit more now, so that’s helping. But I think getting over the mental side has been the hardest. The physical side, I’m more or less back to the way I was, but the mental side is taking a bit longer. I meditate. I also don’t read or look up things too much now. I’ve cut that down a bit and just try to be a bit more present.

Finding a New Mental Balance and Avoiding Doom-Scrolling

I know I’m healthy. I’m doing everything right and just stick to the positives. We’re in a world where you can overlook stuff. The more you look up stuff, the more you see the negative than the positive.

Doing something like this is trying to put that positive out there. I’ve got a positive story. I had a positive outcome, to say how stage 4 bowel cancer had gone so many places. I’m lucky to be where I am, because we did have a neighbor who was also diagnosed at the same time as me who didn’t get through it, so it does make you count your lucky stars a little bit that I’m still here.

As much as I lock myself away, I’ve been given that chance to live again. I drive the kids potty because I want to make every second count, every memory count, and they’re like, “I just want to be a teenager.”

What I’ve found on this journey is that when you’re in the treatment and your surgeries, you’re fighting the fight. Then when you’re finished and the doctors go, “Yep, fine, see you in a year,” you feel very much left and quite vulnerable. Any little twinge or anything, I feel like I have to phone them and go, “Just please check it. Just make sure that it’s nothing.” They are understanding of that. They know that they told me I was fine before, so I don’t always take their word for it. But again, that is getting better.

Hearing “No Evidence of Disease”

I was with my mum. She came with me to the meeting to see the oncologist, for him to say, “There’s no evidence of disease and we’re just going to put you on monthly checkups.” That was it.

I didn’t want to celebrate it. I didn’t know what to do because we walked out of the meeting, and then my mum looked at me and went, “Are you happy? Are you happy?” I went, “Yeah, but I don’t feel like I can enjoy it. I feel like if I laugh in its face, it might come back,” so it was a bit of a surreal moment.

I didn’t want to go out and start screaming, “It’s gone! I’m free from it,” because there’s always that what if. I always have to mentally have it there and prepare myself to hear those words again, so I didn’t feel like I could just jump for joy.

Major Surgeries and Surgical Menopause

They removed part of my lower bowel, both my ovaries, and a section of my bladder where there seemed to be some disease. That was the first surgery. They did all that and “had a good rummage,” they said, and looked at everything else. They didn’t see it anywhere else, just those things.

They did put me into surgical menopause with that. That’s probably been another battle in itself, just getting over the surgical menopause. I thought it was going to be moods and hot sweats. I wasn’t expecting the joint problems, brain fog, and all that, because my brain does not work like it used to either. That’s another thing, but I won’t put that down to the chemo; I’ll put that down to my hormones.

The second surgery was just my liver. They took two sections of my liver, but at the same time found scar tissue that had caused the bowel obstruction. They did all that at the same time. It was a good six weeks, maybe a bit longer with the second. I don’t know why, but physically, it took a lot longer. Six weeks until I felt more like myself.

Recovery and How Long It Took to Feel Like Herself

I don’t think you realize how much you use your core. The taking of the organs didn’t seem to bother me. Everything worked fine. I was lucky because I didn’t have to have a bag, so I think that was a big help.

I heal pretty well. I do bounce back pretty quickly. The first surgery, I was six weeks and straight into chemo, so we never really knew what was causing problems — whether it was the chemo, still getting over the surgery, or going through the menopause. A lot of things at that point were masked.

The second surgery, again because it was the same kind of surgery, it was another six weeks until I could physically do the basics. I was just happy to be here, to be honest. I just took my time. I’ve got an army of people around me, so I just took my time and didn’t push myself, because they all know what I’m like. I can try and jump in too soon, hence my mum keeping me for six weeks every time.

What Survivorship Feels Like Now

It’s a strange one because you don’t want to take anything for granted. You want to live your life to the full, but at the same time, you’re scared. You’re scared of hearing those words ever again. Then you get the guilt. There’s a bit of guilt there, going, “I shouldn’t be scared. I should be going for it.”

Then there’s this survivor’s guilt. The amount of people who I knew that didn’t make it through, you do question, “Why me? Am I not doing enough? Am I not living my life? Are they going to think I’m not living my life to the fullest?” It’s a strange one. People think you should be jumping up in the air and celebrating it, but you’re just scared to hear those words again.

From the beginning, when we found out it was stage 4 bowel cancer, it was, “I’m not going to be here for my kids.” You sit and plan all the things that you might say through each milestone of their life. You never forget that feeling, and you don’t ever want to feel that feeling. So surviving it, you do want to make the most of life, but it’s hard. It’s hard.

Being “The Strong One” and Finding Community

I have a very good unit, and I am the positive person everyone comes to. They’re like, “You’re not the one who’s supposed to break. You’re the one who’s supposed to hold everyone together.” As a family, we all saw it as: if anyone’s going to get through it, it’s Nina. She doesn’t go without a fight. That’s kind of how it was.

Survivorship is one of those things you don’t understand unless you’ve had those words. I was very open on my Instagram about my story and what I was going through, just in case it reached anybody else that was fighting. I have met some lovely people and made some close friends who are either going through it now or went through it at the same time as me.

You have that little community where you’ve got a little secret wink of, “I know how you’re feeling,” kind of thing — and you need that. As much as your family love and care for you, they don’t quite understand. There needs to be support for them as well, because they don’t quite understand that being scared of what’s coming, especially when you think that that is it.

It feels like it’s just a matter of weeks or months or something. I can’t even explain that feeling. I’m not saying it’s any easier when you haven’t got kids, but when you have kids, you think you’re never going to see them do certain things in their life. You have kids because you want to see all that.

Making Keepsakes for Her Kids

I made some little knitted mice. I think one of my sisters must have bought me a kit. I made one for each of my kids. I think I did some for my mum as well. When I was in the hospital the second time round, when I was poorly in between my chemo, I made them all little bookmarks — something that I’d made and touched so they could have something.

I wanted them to have something that would remind them of me if I wasn’t there. I just wanted them to have something that I’d made. I’m not very good at knitting. They’ve still got them.

Meditation, Movement, and Lifestyle Changes After Cancer

I meditate. I’ve got better at it because I was not very good at it at first. I have a very busy head. I do lymph drainage, a body tap. I have a trampoline in my back garden that I bounce on every day.

I do Pilates. I don’t lift weights like I used to. I don’t put my body under that much stress because I believe stress was a big cause of my cancer. I do meditation, Pilates, moving my body in general without pushing myself, and walking. We have a dog now. Once I knew that I was okay, just being outside in the fresh air has helped.

I eat extremely healthily. I eat more of a vegan diet, but I just think as long as you’re eating good food, not processed, stick to that. I do supplements, but I think in general it’s just reading your body. If I’m tired, what can I do to help my body? Meditation has been great for my head because that is one thing I do struggle with.

Everything I use on my body, I make, like my own creams and stuff. My kids aren’t the biggest fans; they’re getting used to it. Pilates and meditation have been the main thing for me right now.

Advice to Others

I think all cancers kind of come to the same thing. You’ve just got to hold on to hope, no matter what the diagnosis is. We are not a number. Everyone’s unique. I always say: don’t Google.

Look for the positive stories. I was never one to go and look at negative stories. There are some great books out there. “Radical Remission” was one of the books that I read that was just a game changer for me, because it had so many positive stories and outcomes in it.

You’re not saying you look for the negative, but the negative stuff comes up pretty easily, so don’t look for that. What I tell the people that have contacted me is: everyone’s journey is different. I’m not saying the younger ones or the older ones are any different, but don’t put yourself in any kind of box.

I just had hope. I told my oncologist, I’m here till I’m 96, so I’m not that easy to get rid of. You do have to take it into your own hands a little bit. The doctors can do what they can do, but don’t just leave it to them. There are so many things that you can do for yourself, whether it’s healthy eating, meditating, or moving.

Moving is a big one. Don’t just crumble, as much as it’s so hard. Speak. Tell people how you feel. Even if you think they don’t want to hear it or they’re too scared to hear it, it’s better out than in. If you can’t speak to the loved ones about it, there are people out there that will talk to you. Macmillan is amazing.

You’re not alone, because it is a very lonely place. It is a very, very, very lonely place. That’s what I told my father-in-law, actually. He was diagnosed this year. He’s a big guy, very proud. I just remember holding his hand and saying, “You’re not alone.” I said to my husband, “I want him to know that he’s not alone, because as much as you put a brave face on, it was a very dark and lonely place, especially when you feel that people don’t understand.” You’re not alone.

Let’s have hope and just find your little community to talk to.

Final Reflections and Listening to Your Gut

It’s tricky because, like I said, we aren’t a textbook, so everyone’s different. As I’ve said to anybody who’s spoken to me about what I did or things I might have taken, you’ve got to find your own path. You can take advice from everybody, but don’t do anything that doesn’t feel right.

I always went with my gut. If something in my gut took me in that direction, I would follow that. But if people were advising all sorts and I had a doubt, I wouldn’t go down that route. Tune into yourself and figure out what’s right for you.

Do what you can do for yourself and not just leave it to the doctors, because the doctors can only do what they can do. They are amazing. I had some amazing people at the hospital. I’ll never forget their faces and their names. But at the same time, I did take control of it myself for certain things. Everyone’s journey is different.


Nina H. stage 4 bowel cancer
Thank you for sharing your story, Nina!

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Categories
ALK Chemotherapy Lung Cancer Metastatic Non-Small Cell Lung Cancer Patient Stories Radiation Therapy Targeted Therapy Treatments

Ruchira’s Stage 4 ALK+ Lung Cancer Experience, Biomarker Testing, and Breaking the Stigma

Ruchira’s Stage 4 ALK+ Lung Cancer Experience, Biomarker Testing, and Breaking the Stigma

When a mild, on-and-off cough first appeared in 2021, Ruchira never imagined it would lead to a diagnosis of stage 4 ALK-positive lung cancer. Healthy, active, and a lifelong nonsmoker, she was juggling work, travel, and time outdoors in Vancouver, British Columbia, when her dad urged her to get the cough checked. An X-ray, CT scan, and ultimately a PET scan and biopsy revealed adenocarcinoma in her left lung, shattering her assumption about lung cancer.

Interviewed by: Taylor Scheib
Edited by: Katrina Villareal

The road to that first diagnosis was long and emotionally draining. In Canada’s system, it took about eight months from the initial imaging to confirm lung cancer, as Ruchira cycled through scans, bronchoscopy, and biopsies, while hoping it might be something like tuberculosis instead. “It’s not only me, but also my family that’s along this ride,” she says, recalling how her father even suggested she return to India for faster care. Surgery offered early hope; margins were clear after a lobectomy, and everyone believed the cancer had been removed.​

Ruchira A. ALK+ stage 4 lung cancer

Within months, though, new symptoms surfaced. A low-grade fever, relentless coughing, and eventually coughing up blood led to more tests, the discovery of a collapsed left lung, and the news that her cancer had not only returned but had progressed to stage 4. Ruchira describes this second diagnosis as “mind-boggling,” coming before she had processed the first. She felt exhausted, scared, and deeply aware of how little control she had, even while self-advocating and staying on top of appointments.​

Biomarker testing changed the direction of her experience. Learning she was ALK positive opened the door to targeted therapy, and Ruchira began a once-daily pill that she calls a “miracle drug.” Within a week, her many symptoms eased, and within three months, she was told there was no evidence of disease.

Today, Ruchira frames her stage 4 ALK-positive lung cancer as a serious but treatable condition, one she manages while rebuilding her career, planning future travel, and investing in stress management and spirituality. She now speaks openly about biomarkers, stigma, and the importance of sharing stories so others feel less alone and know that advanced lung cancer is not always a death sentence.​​

Watch Ruchira’s interview or read the edited transcript below to find out more about her experience:

  • How listening to subtle symptoms, like a mild intermittent cough, can lead to earlier testing and answers, even when you feel otherwise healthy​
  • Why long diagnostic wait times can compound fear and uncertainty for both patients and families, making self-advocacy and persistence especially important​
  • How biomarker testing can dramatically change treatment options, opening doors to targeted therapies that may control stage 4 ALK-positive lung cancer with fewer side effects than chemotherapy
  • How a targeted therapy pill transformed Ruchira’s experience from escalating symptoms to no evidence of disease, allowing her to return to many of the activities she loved and to rethink what life with stage 4 cancer can look like
  • Every person’s cancer experience is unique, but no one should feel blamed or shamed​

  • Name: Ruchira A.​
  • Age at Diagnosis:
    • 53
  • Diagnosis:
    • Non-Small Cell Lung Cancer (NSCLC)
  • Staging:
    • Stage 4 (Metastatic)​
  • Mutation:
    • ALK
  • Symptoms:
    • Mild intermittent cough while talking
    • Low-grade fever
    • Severe nonstop cough
    • Coughing up blood
    • Collapsed left lung​​
  • Treatments:
    • Surgery: lobectomy
    • Targeted therapy
Ruchira A. ALK+ stage 4 lung cancer
Ruchira A. ALK+ stage 4 lung cancer
Ruchira A. ALK+ stage 4 lung cancer
Ruchira A. ALK+ stage 4 lung cancer
Ruchira A. ALK+ stage 4 lung cancer
Ruchira A. ALK+ stage 4 lung cancer
Ruchira A. ALK+ stage 4 lung cancer

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.



Who I Am

My name is Ruchira. I was diagnosed with lung cancer. I’m a two-time survivor of ALK+ lung cancer. My first diagnosis was in May 2023, and my second diagnosis came the same year in October. I currently live in Vancouver, BC. I have been in North America for almost 26 to 27 years. I first lived in California and then moved to BC.

I enjoy many things. I enjoy the outdoors, nature, walking, hiking, and photography. I got into photography during the COVID pandemic. I started with food photography, then moved to landscape photography.

Traveling is about experiencing new cultures, new places, and new people. My parents were that way, and I think the love of traveling comes from them. I have traveled to quite a few places before cancer happened.

What My Symptoms Were

I was leading a normal life, a good life. I was working, traveling, and doing all of the regular things. In 2021, I started coughing a little bit when I would talk on the phone. My dad was the first person who noticed. He said maybe I should go to the doctor and have it checked.

I didn’t pay any attention to it because I was healthy. I had no health conditions. I didn’t feel any other symptoms either. The cough was very mild and intermittent. It wasn’t persistent. I thought maybe it was just a bug that I picked up and that it was going to resolve itself. A year went by and sometime in the middle of that year, the cough went away.

Another year went by and I got COVID, which is what made me go to the doctor. I told her that I had this cough and she promptly ordered an X-ray. The X-ray showed something, so the radiologist recommended that I get a CT scan done. She ordered a CT scan and they found a 3.5-centimeter mass on the lower lobe of my left lung.

After that, I was given a referral to a thoracic surgeon. I asked him if this mass was something to be concerned about. He asked me a bunch of questions and based on my responses, he thought that it was benign. I was living in the hope that maybe it wasn’t going to be anything. He ordered some pulmonary tests, a PET scan, a bronchoscopy, and a biopsy. My bronchoscopy and pulmonary tests were fine, but my PET scan and biopsy gave us the confirmation that it was adenocarcinoma and primary lung cancer.

The Shock of My Diagnosis

It was shocking. It was a long diagnostic process, but all throughout, I was hoping that it was a mistake. Maybe there was some confusion. I was traveling to India a lot, so maybe it could be tuberculosis or something else. I was hoping that. When you’re a nonsmoker, young, and healthy, you don’t think that it could be something as serious as lung cancer.

It was shocking. My first reaction was, “Oh my gosh, what do I need to do next? How do we move forward and handle this and solve this problem basically?”

The Agony of Wait Times

There is a big issue here. It took me six months to get my PET scan and another two months to get my bronchoscopy and biopsy. It was eight months in all. A lot of time went by because I was hoping that it would not be lung cancer. By the time the PET scan happened and we found out that there was this spiculated mass, we knew that it was moving in the direction of lung cancer.

It was difficult. It’s not only me, but also my family that’s along this ride. My dad even started to say that maybe I needed to go back to India and get the ball rolling there. It was very difficult.

I Didn’t Know Much About Lung Cancer

I had very little knowledge of lung cancer. We don’t have any family history of cancer. My knowledge was very limited. I had a lot to get up to speed on, not only about the disease but also about biomarker testing and available treatment options.

My original understanding was that lung cancer is one disease and it is treated by surgery and traditional treatments, like chemotherapy and radiation. As I went along the journey, I found that there is biomarker testing and the implications of that on treatment.

The Cancer Came Back

At that point, I didn’t even know about a recurrence. I had gotten my lobectomy done and was getting out of the hospital. My brother was with me and I was coughing again. He jokingly said, “This is why we went and got this surgery done in the first place, and here you are, coughing again.” I didn’t think it was anything because I was just getting out of the hospital.

When I had my follow-up with my surgeon, I told him about this. He responded that it’s something that some patients face after a lobectomy, that I should give it time and it would get better. I started focusing on my recovery and didn’t think anything of it.

In July, the symptoms, even the cough, settled down. August is when new symptoms began to emerge. I had a low-grade fever. The cough then became nonstop from morning to night. It was so bad that I couldn’t even talk to anybody. WhatsApp and emailing were my ways of communicating with people. There was also blood in my cough. I called my surgeon, of course, who began ordering tests again.

By October, I was back in the hospital. We did a bronchoscopy again and found out that I had a collapsed left lung and it would not stay inflated. We also found out that there was another tumor and the cancer was back. We did a PET scan and found out that it was stage 4.

Processing the Second Diagnosis So Soon After The First

It was so mind-boggling that it could come back so soon. You wonder what happened. I had just had the surgery. My margins were clear. The surgery was successful, so you wouldn’t think that it would come back so soon.

I hadn’t even begun to digest the shock of my first diagnosis, yet here I was dealing with a second one.

It was very scary to see blood. I was so mentally and physically exhausted by then, after having the surgery, nonstop coughing, and then seeing blood in it. It’s a lot to handle. The symptoms were the most difficult part of my journey.

I also felt that things weren’t in my control. You’re trying to do your best. You’re self-advocating. You’re on top of things as a patient. Yet the disease is progressing from stage 1 to stage 4. You think you’re curable. One minute, everything has gone fine and the cancer is out. The next minute, you find out that it’s incurable. It’s a lot to deal with mentally and emotionally.

Continued Waiting During the Second Diagnosis

The second time around still took about four to five weeks. As a patient, I was thinking that every day, something must be happening for this to be progressing that quickly, so every day matters. Four or five weeks is still a long time, so it probably contributed.

Discovering ALK-Positive and Biomarker Testing

After I got my first diagnosis, I started to read about the disease. I came across the ALK Positive group on Facebook. I was learning everything and reading everything that I could about this disease. Once I had my lobectomy and went for my follow-up, my surgeon had already ordered a FISH test, which is how I found out that I was ALK positive.

It was good that I found all this information from that Facebook group. I was reading people’s stories there as well. That is where I realized that two people can have lung cancer, but how their cancer behaves is dependent on biomarkers. I also learned how finding out about what gene mutation or fusion you have is so important because it has implications for finding the correct treatment for you.

Targeted Therapy: My “Miracle Drug” 

I am currently on targeted therapy, and it’s amazing. It has been a miracle drug for me. I had so many symptoms by the time my treatment started, but within a week of taking this drug, they all went away. In three months, I was declared to have no evidence of disease (NED).

It’s pretty easy. I take one pill a day, which feels like managing some type of chronic disease. There are fewer side effects than there would have been if I had chemotherapy. It has extended my life. It’s easy to manage. Yes, there are side effects, but there are fewer, so that’s good.

Redefining Stage 4 and Finding a New Normal

When I was going through my cancer year and all these events were happening, it was scary. I didn’t know what my life was going to be. In some ways, things have changed. But in many ways, I have been able to get back to the things in my life from before. That has been remarkable.

I feel so grateful and blessed that a targeted therapy drug exists for me. It’s amazing.

Cancer changes you. You have to go through the process and experience it. You want to get back to your old life, but in many ways, you’re not going to get it back. The changes are so subtle and so deep.

As I’m rebuilding my life after cancer, I’m focusing on stress management. I took some courses on stress management and spent more time on spirituality. I took some courses in breathwork, things that I had not done before. I started to do that. You listen to yourself a little bit more. You try to live fully. The things that used to hold you back before, you don’t allow them to hold you back anymore.

Becoming an Advocate and Sharing My Story

It has taken me some time. Once I found out that I was NED, I wanted to move on. I didn’t want to talk about cancer. I was so mentally and physically exhausted. I had a lot to process, which is what I did.

Around August 2025 or so, I felt like this was an experience that happened in my life and I needed to do something about it. I wasn’t on social media before, so I started an Instagram account and started sharing my experience, what worked for me, and what did not work for me.

Now I am thinking that the least I can do is share my story and educate others. I’m sure some people were like me, who carried a lot of stereotypes about lung cancer. Things like it’s a smoker’s disease or that it’s one disease and you do not know about these gene mutations that cause cancer. You think it is a lifestyle. You think, “Did I do something wrong? How did this come about?” It’s important to realize that there are many risk factors.

Breaking the Stigma Around Lung Cancer

There shouldn’t be any stigma to begin with. It’s not a moral failure. Lung cancer is a biological disease. It can happen to anyone. There are risk factors. Smoking is the number one risk factor, but there are other risk factors, too. Sometimes it could just be a random cell change that makes this cancer happen. For example, for me, ALK-positive is a gene rearrangement that caused this.

Sometimes you don’t have to do anything at all and this can still happen. There shouldn’t be stigma. People should feel comfortable getting themselves checked and getting help. They should not feel that they need to take any blame or shame for it.

Looking “Well” While Living with Stage 4

Strangers look at me and don’t realize that I’m a stage 4 cancer patient. I’m alone all the time.

I had that thought when I got diagnosed. “Is my life over?” But that’s not the truth. It’s not always a death sentence. With all these advances that are being made in treatment options, people are living longer lives. There is nothing to fear, I would say.

Now I’m starting to live my life. The past couple of years have been about adjusting to the side effects, managing them, and getting to grips with everything that has happened. Now I feel like I want to get out there. I want to do some work around this as well.

I’m focusing on building my career and moving forward. I’m looking forward to traveling again.

What I Want Others To Know

Even if you’re a nonsmoker and healthy, listen to your body. If there’s any little sign or change, go to the doctor and have yourself checked. Do not put it off, as I did.

You need to explore your treatment options and not fear lung cancer being a death sentence.

People should also go out and share their stories. I don’t know how many people do. I read somewhere that for lung cancer, people don’t share as much or it’s not mainstream. Recognizing the importance of why every story matters is key. It gives hope to patients and makes them feel less alone. It gives data to the medical community, to researchers, and it’s important for funding. People should share their story, like I am right now.


Ruchira A. ALK+ stage 4 lung cancer
Thank you for sharing your story, Ruchira!

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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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Categories
Allogeneic stem cell transplant Autologous stem cell transplant Catheter placement Chemotherapy Chemotherapy port installation Hodgkin Lymphoma Patient Stories Radiation Therapy Stem cell transplant Surgery Treatments

16 Years in Remission: Tristan’s Hodgkin Lymphoma Story

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.

Tristan C. Hodgkin lymphoma

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)
Tristan C. Hodgkin lymphoma
Tristan C. Hodgkin lymphoma
Tristan C. Hodgkin lymphoma
Tristan C. Hodgkin lymphoma
Tristan C. Hodgkin lymphoma
Tristan C. Hodgkin lymphoma
Tristan C. Hodgkin lymphoma

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.



My name is 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.


Tristan C. Hodgkin lymphoma
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Categories
Cancers Chemotherapy Immunotherapy Metastatic Metastatic Patient Stories Radiation Therapy Stomach Cancer Surgery Total Gastrectomy Treatments

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

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.

Lisa B. stomach cancer

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
Lisa B. stomach cancer
Lisa B. stomach cancer
Lisa B. stomach cancer
Lisa B. stomach cancer
Lisa B. stomach cancer
Lisa B. stomach cancer
Lisa B. stomach cancer

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.


Lisa B. stomach cancer
Thank you for sharing your story, Lisa!

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Categories
Chemoperfusion Chemotherapy Clinical Trials Colorectal Lung Resection Metastatic Patient Stories Surgery Thoracotomy Treatments

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

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 L. colorectal cancer

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)
Kina L. colorectal cancer
Kina L. colorectal cancer
Kina L. colorectal cancer
Kina L. colorectal cancer
Kina L. colorectal cancer
Kina L. colorectal cancer
Kina L. colorectal cancer
Kina L. colorectal cancer
Kina L. colorectal cancer

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.



My name is 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.


Kina L. colorectal cancer
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Lindsay

Lindsay D., Colon Cancer, Stage 4



Symptoms: Lump in pelvic area, funny-smelling food, weight loss
Treatment: Chemotherapy, colectomy (surgery)

Categories
Chemotherapy Diffuse Large B-Cell (DLBCL) Metastatic Non-Hodgkin Lymphoma Patient Stories Treatments

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

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.

Anna M. DLBCL

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
Anna M. DLBCL
Anna M. DLBCL
Anna M. DLBCL
Anna M. DLBCL
Anna M. DLBCL
Anna M. DLBCL
Anna M. DLBCL
Anna M. DLBCL
Anna M. DLBCL
Anna M. DLBCL
Anna M. DLBCL

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 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.

Sharing the news with my family and friends

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.


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Stage 4 Colon Cancer, Faith, and Family: Kristie’s Story

Stage 4 Colon Cancer, Faith, and Family: Kristie’s Story of Redefining Life

Kristie went in for a routine screening colonoscopy she’d scheduled on her husband’s birthday, a date she now remembers for both celebration and shock. She went in for her first colonoscopy only after her OB-GYN insisted a second time, following a missed referral during the pandemic. Waking from anesthesia, she heard the words no one wants to hear: the doctor had found cancer in her sigmoid colon, later staged as stage 4 colon cancer when they found spots in her liver. Her surgeon spoke plainly about metastatic disease and palliative care, but also emphasized that treatments and outcomes are changing quickly and that her attitude and support system would matter.

Interviewed by: Keshia Rice
Edited by: Chris Sanchez

Before her colorectal cancer diagnosis, Kristie was an active high school English teacher, department chair, Ph.D. student, and devoted member of her church and community. She was athletic, too; she ran 5Ks, hiked and went camping with her husband, and spent weekends traveling to watch one son pitch college baseball and the other teach and coach. Looking back, she realizes that chronic constipation and pencil-thin stools were possible warning signs of colon cancer, but she attributed them to lifelong constipation and perimenopause. Now she uses her platform to urge others to “pay attention to your poop” and to keep up with colonoscopy screening.

Kristie C. colon cancer

Kristie’s experience has included multiple rounds of chemotherapy, radiation, a colon resection with temporary ileostomy, liver ablations, and a planned liver resection. Chemo has brought cumulative side effects like diarrhea, neuropathy, cold sensitivity, severe skin reactions, and deep fatigue that she describes as akin to trying to walk against ocean waves. But she also talks about the infusion nurses who treat her with deep compassion, friends who drive her to chemo so her husband can keep working, and sons who quietly carry their own fear while trying to let her rest.

Over time, Kristie C. has shifted from seeing herself primarily as a full-time teacher to embracing a new identity as a writer and researcher who lives with chronic illness. Her faith, family, and love of nature shape how she uses whatever time she has: investing in relationships, advocating for public education and more just health care, and speaking honestly so others feel less alone.

Watch Kristie’s video or read her interview transcript below to know more about her story:

  • Kristie’s first colonoscopy at age 51 led to an unexpected stage 4 colorectal cancer diagnosis on her husband’s birthday, reshaping how she thinks about time, work, and legacy
  • Her experience with multiple treatment regimens has been physically and emotionally intense, but she emphasizes that, “There is beauty to be found… There is hope, and there are lessons to be learned.”
  • Kristie shifted from being a constantly producing teacher to a writer and researcher, focusing on presence, purpose, and connection
  • Her story highlights how serious illness is as mental as it is physical; it demands feeling hard emotions without staying stuck in despair, and choosing where to place hope each day
  • Kristie’s marriage, faith, and friendships have deepened as she and her husband both live with cancer diagnoses, learning to let others help, protect space for caregivers, and hold on to joy alongside uncertainty

  • Name: Kristie C.
  • Diagnosis:
    • Colon Cancer
  • Age at Diagnosis:
    • 51
  • Staging:
    • Stage 4
  • Symptoms:
    • pencil-thin stools
    • constipation (had always been chronic and she attributed to perimenopause)
  • Treatments:
    • Chemotherapy, including adjuvant chemotherapy
    • Radiation therapy
    • Ablation therapy: liver ablation
    • Surgeries: colectomy, temporary ileostomy, ileostomy reversal, liver resection (scheduled)
Kristie C. colon cancer
Kristie C. colon cancer
Kristie C. colon cancer
Kristie C. colon cancer
Kristie C. colon cancer

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.



My name is Kristie

I am from South Carolina, and I was diagnosed with stage 4 colorectal cancer. My cancer is technically colon cancer, but it is in the sigmoid part of my colon, which is so low that they go back and forth as to how they treat it, whether it is just straight colon or rectal, but it is technically colon cancer.

I was diagnosed with colon cancer on my husband’s birthday

I was diagnosed on July 12th, 2023, and I remember the date because it was my husband’s 58th birthday. 

I had recently visited my OB-GYN. I saw her at 50. She told me I needed to have a colonoscopy, and I said, “Yeah, it is time.” I had watched my husband go through one at 50 and did not think anything about it, but it was not long after we had just started going back, opening up after COVID, and so I did not get a call from them. So when I went back at 51, she said, “Did you not get a colonoscopy?” And I said, “No, they never called me.” And she said, “No, no, we are going to take care of this right away,” and she had her nurse call an office in town, and they got me in within a couple of weeks.

When the nurse called, she said, “We have an opening on July 12th,” and I was hesitant. My husband happened to be there, and I said, “It’s your birthday.” And he was like, “No, no, no. Go get it done. Get it done in the morning, and then we will go do something fun for the rest of the day for my birthday.” And I said okay but it was my very first colonoscopy ever.

I woke up from the medicine, and the doctor said, “We found cancer.” That was the first thing he said. I was really silly about it. I was like, “How much is this going to disrupt my life?” And he said, “Oh, this is definitely going to disrupt your life.” He said, “I have already tattooed it and biopsied it, or I have taken some to be sent for a biopsy. I referred you to a surgeon. You should get a call from them within a couple of days.” So it was obviously big enough for him to tell that it was going to be a problem.

My life before my colon cancer diagnosis

I was one of those people. Some people would call me an overachiever. I was definitely one of those people who felt like a moment could not be wasted in a day. I was busy all the time. I taught secondary English. Most of the time, 11th graders. I would have a couple of 10th graders, and I would have a couple of seniors, but the majority were 11th grade. I was the department chair.

I was working on my PhD, which I did finish. So I was teaching during the day. I was writing a couple hours at least once a week, sometimes twice a week for my classes, conducting action research, very much active in church and community, and with friends, and so there was hardly ever a day when I just came home. I have two grown sons. They are now 27 and 22. When I was diagnosed — well, my younger one is still in college. He is working on a graduate degree, but my younger son was playing college baseball. My older son teaches. He teaches high school as well, high school social studies, and coaches football and baseball. So we were traveling to see my younger son play, and we were going to see my older son’s teams play. We were just very active. I did not slow down at all.

Teaching, faith, and identity as an educator

It is an immense factor in my identity. I would say, first and foremost, my identity is as a follower of Jesus, but then second, I am a wife and mom, third, an English teacher, and every one of those other identities has been shaped by my role as a teacher, my husband as a teacher, my older son as a teacher. We are a family of educators.

I have advocated at the state and national level for public education, for the National Writing Project, and for National Board Certified Teachers. I am a National Board Certified Teacher. I do not know how to look at the world outside of being a teacher. In fact, I was talking about children and my need to protect children. I said, I am a Christian, a mom, and a teacher. My entire existence is focused on protecting and educating children. The high school where I teach — or I did teach — was the high school my husband graduated from and both of my sons graduated from, and my husband taught in the same school district. I used to tell people it would be really hard to find somebody more invested in our local school system than me. Both of my sons played sports there. My husband did too. He coached. Our worlds center on school activity.

Subtle colon cancer symptoms and “Pay attention to your poop”

I tell everybody there were no signs, none that I would have been aware of recognizing. I did battle constipation. However, I have battled constipation most of my life. It was nothing new, and I was reaching the age of perimenopause, and I knew that that was also a time when digestive issues go along with perimenopause, and so I thought constipation was just part of my life. I had no idea that it could have been indicating colon cancer.

Later on, I found out that smaller, they call it pencil-sized stools, are an indication of colon cancer, I guess because the tumor takes up part of your colon and makes the stool smaller. When I look back, I can say, ‘well, yeah, I did notice some of that,’ but I was not aware that that was an indication of colon cancer. So when I was first diagnosed, I was just absolutely blindsided because I had no idea how to look for it. I had no hereditary expectations of it. Nobody in my family had ever been diagnosed with colon cancer. I was clueless. Maybe, had I been aware a little more of the idea of a pencil-sized stool, I might have been alerted. But I also was so busy and, as I said, had hit a point in my life of perimenopause, I probably would have attributed it to something else.

I have also tried to make it one of my goals when March comes around, and Colon Cancer Awareness Month, I try to make sure people know to get their colonoscopies. But I have adopted this hashtag on my Instagram. Whenever I talk about my colon cancer, I do hashtag “pay attention to your poop,” because I did not know that there was even the idea that there was a pencil-sized stool. So I really want to make people aware of this. It is gross, and people do not like to talk about it, but we need to pay attention to our poop.

Sharing a cancer diagnosis on my husband’s birthday, and his own cancer experiences

I have tried to make a conscious effort not to bring it up on social media on his birthday. I want it to still be his birthday, you know, but we are aware of it, and we make jokes about it between the two of us. I am very open on social media about my battle with cancer, but on his birthday, it is all about him. I try to make sure that he gets the spotlight and not, oh, yeah, this is my diagnosis anniversary. It is there. It is real. I am not ashamed of it or anything, but I do not want to take away from him.

He is also a prostate cancer survivor. He was diagnosed with prostate cancer in the spring, right before I was diagnosed. He had had his prostate removed the month before I was diagnosed, and in his prostate cancer journey, you know, the different MRIs and PET scans and things that we do, they found a meningioma in his brain, and so he had to have that removed. That was benign, though, but he had that removed the week before Thanksgiving, as I was in the middle of my first few rounds of chemo. So we have had our encounters with cancer.

Marriage, caregiving, and being in the “C-Word Club” together

It is absolutely huge. I tell everybody there is no way I do not think I would have done as well as I have done had he not been supportive. When major events like this happen, it does one of two things to a couple: it either brings them closer or it separates them. While he was with me in childbirth and stuff, prostate cancer meant that he came home from his prostate surgery with a catheter, and all the gross things that happened with colon cancer — when I had my colon resection, I had a temporary ileostomy.

He has seen me in a lot of really yucky situations, where my poop was hanging out of my stomach in a bag, and now, after the colon resection, I battle what is called LARS, low anterior resection syndrome, which means that I do not have a lot of wait time to go to the bathroom. He has been nothing but supportive and has seen me in lots of really gross situations, and I am so grateful that it has brought us closer, that it has made us a stronger team, and it has really made us understand that we do not want to go through life without each other.

We have seen each other in new lights and in some gross situations, but at the same time, it has really put the focus on our friendship, our partnership, our companionship, and our dependence on each other. I always thought I was quite the independent person, and cancer will not let you be too independent, especially when you are recovering from surgeries and have things like ileostomies. So it has made me appreciate him as someone I can depend on.

Hearing “stage 4 metastatic” for the first time

I want to tell you that when I met with the surgeon the first time — and he was wonderful to me — but the first time I met him and sat in his office, he was the one who had to deliver the news that I had already seen, which was stage 4. I had already seen the CT scan results because we get those online on MyChart, and I can read them, which I am very grateful for. The CT report showed everything was clear except for my liver; there were spots in my liver. So I knew that it was in my liver.

But when I sat in the office with him across from me, with my husband beside me, and he said, “It is stage 4 metastatic cancer. We do not talk about cures in stage 4. We will talk about palliative care,” he unloaded on me first and foremost, from the very beginning, before he said anything else, the worst case scenario. I did not understand that that was what he was doing at first.

My association with palliative care was when my father-in-law died when he was placed in a palliative section of the hospital, and they just gave him pain medicines as he died. So that was my first image of what he meant by palliative care. I started crying, and he said, “I know this is upsetting. I would be worried about you if you were not upset about this.”

Then he gave me the worst case scenario first, but then he sort of framed it for me —“Now that I have given you the worst case scenario, let me walk you back.” He said, “First of all, be very careful of what you read on the internet. A study that was current even just five years ago is out of date now. There are so many new treatments being created every single year. So the numbers from five years ago do not hold anymore. Secondly, even if we are not able to cure it, there are lots of treatments. It does not mean that you will die within two years. That may be what the numbers say right now, but we have lots of options.”

He said, “You clearly have a good support system,” with my husband being there. “What happens from here on out depends on your attitude and the approach you take. There are lots of supports available to you. If you keep a positive outlook, if you do what you are told in terms of taking care of yourself, still trying to eat and exercise, it does not have to be an immediate death sentence.” But he scared me pretty good to begin with.

Immediately, I thought about things like, I do not want to die in my 50s. My mother, who had some chronic illnesses — never cancer, but some chronic illnesses — died in her 60s, and I thought, “I am not even going to make it as long as my mom did.” Then my next thought was, “I am not going to get to be a grandma. I am not going to know what that feels like,” because I want to enjoy being a grandma. I immediately started thinking about all the things I was not going to get to do, and that upset me tremendously. I did a lot of crying. I did a lot of questioning, like, why? How did this happen?

I was so concerned about my health before I found out I had cancer. I am going to grab a Kleenex because my nose is running, and that is part of chemo stuff. Literally less than two months — it was probably closer to a month — before I was diagnosed, at the end of May, six weeks before I was diagnosed, I ran a 5K. I ran 5Ks probably three or four times a year, competitively. I would run for practice at least a mile, two, or three times a week, probably a 5K at least once a week. I used to be an active member of a cardio kickboxing group. It closed as a result of COVID, but I did yoga twice a week. I was in great shape. I was really particular about what I ate. My husband and I hiked all the time. That was our favorite thing.

We would hike and tent camp. Literally, the summer before, within a couple of weeks before I was diagnosed, when we would go see my younger son play in summer ball in North Carolina, we would tent camp. We would find a national forest or a campground close to the ball field, and we would bring our tent, and we would tent camp and then get up and hike, go get something good to eat, and then go see my son play ball. That was how we intended to spend all summer long. So I was wrestling with this: you have done so much to take care of your health, and it did not stop colon cancer.

Then I went on a thing of, well, where is this coming from? It is not hereditary — some people’s are, but mine was not. When they did the tests, they determined that it was not hereditary. It was environmental. So I went through this whole thing about processed foods. My area of research is adolescent literacy in the outdoor classroom, so I am quite the advocate for environmental concern and protection. I went through this thing like, these are environmental conditions that we have brought in, and so then I get angry. I went through a whole lot of trying to find what gave me this, despite trying to take care of myself, and I struggled a lot with questions of why and how this happened to me.

Telling our adult sons about stage 4 colon cancer

My husband and I, we have — I do not know if you call it a policy — we have just agreed that no matter what happens, whatever news we get medically, we do not do anything until we talk in person to Jordan and Joel, our sons. They hear first directly from us. My younger son happened to be playing ball in Virginia when I got this news. My older son, I came home and had him come to the house, and I told him, sitting on the couch.

My older son is the one who stuffs his emotions. So he listened really quietly and just said, “Yeah, okay,” and did not let me know how he was feeling at all. When we told my younger son, when we went to see him play ball in Virginia, the first night, we were like, we are not going to tell him before he throws. He is a pitcher, because I did not want this on his mind to affect his performance when he was on the mound. He came in — he is a relief pitcher, a left-handed relief pitcher — he came in for just two innings. After the game, we were cheering him on, had a really good two innings, and he said, “Coach said because I did not do but two innings, I am probably going to be in the bullpen again tomorrow night.” So we went, well, we cannot tell him now. He played an away game the next night.

So we went to see the away game, and it started raining. He had a really rough outing that time, but we had to tell him because we were going back home and, like I said, I was not going to tell anybody else — I was not even going to tell my dad — until I had told him. So we had to tell him after the game, before he got on the bus to go back, and it was awful. I hated telling them because I wished we had had more time to talk it through, but I said, “Joel, I have to tell you what the test results said.” We tried to reassure him. It was like, “It is okay. I am probably going to start chemo. We want you to stay and keep playing. There is no reason for you to have to come home because your dad will take me to treatments.” It was in the summer, so we were out of school. I was like, “You keep doing you. We want you to focus on your future,” which I realize now that was really how we felt, but that was impossible for him.

The summer leagues only go through the end of July anyway, so we only had a couple of weeks left, and when he came home before he went back to school, he was like, “Mom, you know I could not think of anything else. It was on my mind,” and I was like, “I know, but there was nothing you could do.”

Later on, when the chemo got really rough, and they were planning for the colon resection surgery, he would talk to my husband on the phone without me, and my husband would tell me later. He would say things like, “Do I need to come home?” My husband said that he would tell him, “I will let you know when it is time to come home. If I thought she was in that bad of shape, I would have told you to transfer to a school down here. But she would be so upset if you gave up baseball to come back home.” So what we ended up doing was, when he played his college games, my husband would — we had a Jeep Wrangler and a Subaru Outback — whichever vehicle we took, he would clear out the back and lay blankets and pillows down, and I would lay in the back until our son came in to pitch, and he would text me, “He is in the pen.” Then I would get out, go sit in the stadium, watch him throw, and then I would go back to the car. We made it work.

I am going to tell you one other quick story. After my colon resection — that was on January 29th, 2024 — they ran more tests. They do CT scans and things like that to see if the surgery worked. When I went back to my oncologist, he told me, he said, “You look clear now.” He said, “Come here,” and he pulled me up to the screen. I have to say this about all of my oncologists and surgeons: they have been wonderful about this. Whenever they pull up the records on the screen, they would have me come sit beside them, and they would show me exactly what they saw. He said, “I want you to look,” and he had changed my diagnosis from palliative to curative.

Now we are back at palliative because it has recurred in my liver — that is another story — but when he told me that, when he showed me that he moved it to curative, my friend Vicky, who takes me to several treatments — I have been so blessed with friends who have taken me to treatment: Vicky, Evelyn, and Sherry. They have taken me to my chemo treatments so my husband can continue to work during the chemo treatments. That way, he saves up his days so that he can be there with me in surgeries. His current employers have been wonderful about letting him get comp time so that he can be with me during the surgeries, but for regular everyday chemo, my friends would take me.

So my friend Vicky was there. My husband met us there. After that meeting, I came out and told them first. We got in the car, and I called Joel first in West Virginia and told him that they had moved it to curative, and I could hear him crying, and I am going to cry thinking about it. Then we got home, and I waited for my older son to come in from work and got him in the living room, and told him that it had been moved to curative. He said, “Good,” and he went to the bathroom, and I heard him break down. As I said, he is the one who stuffs his feelings.

That day, it was clear to me how much effect it had had on them when it was like they could finally relax. They handled it pretty well in front of me, but when I was able to give them the good news, that was when it really became clear to me the effect it had had on them. Honestly, my older son moved home. At first, he moved home to stay. He never said outright that it was because I was in chemo, but for the first year of my chemo and surgeries, he lived at home. That next summer, after I had had the surgery and it looked much better, he moved back out. As I said, he will not say it out loud, and the other one says it to my husband, not to me. I think they do not want to upset me either.

What chemotherapy and radiation really felt like

I despise chemo. I am on a chemo break right now because I am scheduled for a liver resection on December 23rd. Today, the day that I am recording this, would have been my next chemo treatment, and I am so grateful that I am not in that infusion center. Let me say, my infusion nurses have been nothing but good to me. They are so compassionate and caring.

I only had five days of radiation. They did radiation right before my colon resection because they said that would improve my chances of not having a recurrence, but because I had radiation, that is what required me to have the ileostomy. They said it did so much damage that they did not want me to try to pass stool through that damaged area. That is why they had to do the temporary ileostomy, and I am very fortunate and grateful that my ileostomy was able to be reversed.

As far as chemotherapy, I have been through three series now. The first one: seven treatments, seven treatments of this drug combo, and I had an eighth treatment before my colon resection without one of the drugs because they needed to stop that earlier than regular chemo before I had the surgery. What the pump means is — this series, I would go on a Tuesday and get probably five hours’ worth of infusion in my port, and then they connect me to a pump. Then I wear the pump home for two days, for 48 hours, and then I go back on a Thursday, and they disconnect the pump.

In my experience, chemo side effects are cumulative. The first couple of times that I had chemo treatment, it was not horrible. I got a little sick to my stomach. I did have diarrhea. One of the side effects of every chemo version I have had has been diarrhea. I have to run to the bathroom, but at that point, to begin with, it was before I had my colon resection, so it was manageable. In the first two series, I had to go to the hospital a couple of different times. They discovered through all the scans that I have diverticulosis, and the first time I had that one chemo drug, it irritated that, and it turned into diverticulitis, which caused fever. One of the things they tell chemo patients is that the minute you get to 100.4, you have to go to the emergency room immediately. That is where we discovered the diverticulitis, which was painful and caused a fever. A couple of times, I have gotten dehydrated, especially with the ileostomy.

The side effects are rough, no lie. I did not have much neuropathy at first. The worst of the first set was diarrhea and nausea, and dehydration. While I had the ileostomy, I went through my second series. They called it adjuvant chemo. They were hoping just to prevent recurrence, and it has worked for the colon — praise God, I have not had any recurrence in the colon. It did not prevent recurrence in my liver. For the adjuvant chemo, they moved me to another chemo drug. That has some really yucky side effects.

I now have neuropathy. My feet, especially — I have some in my fingertips but mostly in my feet — which is numbing and painful at times. I have really sensitive feet. This new chemo drug also causes cold sensitivity. You cannot drink cold drinks. It literally sends electric shock waves in your mouth when you go to drink something. I will never forget the first time I felt it in my fingertips. I thought I was putting sour cream on a baked potato or something, and we had the squeezable sour cream. I picked it up and dropped it and screamed; it was like electric shock waves through my fingertips. It is just massive cold sensitivity.

Of course, I have lost some of my hair. I have not lost all of it, thank goodness, and I am very appreciative of that. I can try to rock a pixie cut. With the new chemo drug, the cold sensitivity got so bad that we tried to do oral chemo. I forgot what it was called, but I tried the pill because I had read on several support groups online that people did not experience the side effects with the oral chemo as they did with the infusion chemo.

So I tried that. Well, then I had what they call hand-foot syndrome, and I got to the point, after a few weeks of oral chemo, where I could barely walk. I would go see my son play baseball. I would stay in the car, and then my husband would drive me to the front and help me walk to the seat. My feet were in such pain and so tender, and they were peeling, the skin was peeling, that it was just horrible. It was just painful, and the skin on my hands was peeling. So then the doctor said, “Okay, we need to stop this for a while,” and so we went on watch and wait until it showed back up in my liver.

I have had two liver ablations, where they have gone in and done lasers to try to cut those out. After the second one, when it showed up again, my new oncologist — my prior oncologist moved away — said, “We are going to have to go back on chemo.” This time, I was on the first combo I tried again, but instead of one drug, they did another. Again, the worst parts of that have been the diarrhea, but the new drug caused what they call “chemo rash.” That has been on my face and neck, but they cheer when you get the chemo rash because that is an indication that the chemo is working, and it has.

I tell everybody, and it is such a cliché, but chemo is a literal and a metaphorical toxic relationship. It is literally putting toxins in your body to kill the cancer, but you have to be grateful for the toxicity because it is killing the cancer. It is the definition of a toxic relationship. I watch my face break out and flake; then it dries out. If my face looks shiny right now, it is because I am constantly putting Aquaphor or baby oil on it to counter the dryness that comes from the new drug. Here is the funny part about it: my hair is coming out because of the regimen, but the new drug is turning my face into werewolf world because my eyebrows are not normally black (they are normally brown), and my cosmetologist said I look like Bert and Ernie. She trims up the eyebrows, but the eyelashes, boy, they are on point. They are just thick. I am getting little hairs all over my face like I never had before in my life.

It is just such an emotional roller coaster: you are throwing up one minute, you are pooping another, your hair is falling out, but it is growing on your face, and there is the fatigue. That is the word they use, but I say it is more like weakness. I told somebody it feels like what it feels like when you are in the ocean, and you are trying to walk against the waves, and you are having to push so much harder on your legs. That is what chemo fatigue feels like. My friends have learned. I am like, this is chemo week. I am in the house this weekend. Then, on my off week, I start feeling stronger, and I can go do things again.

It is a whirlwind, a storm of symptoms and emotions and ups and downs mentally and physically. People told me over and over again, all my nurses and doctors said, the cancer battle is as much mental as it is physical. It is. You have to learn to accept when you cannot do things and then take advantage of the moments you can, and you must learn to deal with the uncertainty. Anyway, I would not wish chemo on anybody except for the fact that it kills the cancer. Now, because of the chemo, I can have a liver resection, but I never thought I would say, “Please cut on me.” I would rather you cut on me than go through another chemo treatment.

My original diagnosis vs. recurrence and living with chronic cancer

I think the original diagnosis was worse, and I will tell you why, but my reaction to the relapse is a different one. The original diagnosis threw such a curve in my life. My husband would probably say a U-turn. It was so unexpected. It derailed my expectations for my life in such a way. I honestly thought I was going to be back at work after a semester.

I remember the first time insurance people started telling me to apply for disability. I thought, “They think I am going to die.” I planned to go get chemo, get surgery, and be back. I struggled for months with that initial diagnosis before I came to be at peace with the idea that I may never go back to work full-time, that I am going to have to fulfill my destiny differently, and it is not going to be full-time teaching anymore. So I wrapped my mind around, well, you have always wanted to write. Here is your chance to write. You can write from the bed. So that is what I have tried to embrace. I have tried to embrace a new academic purpose in my life.

The relapse has a different reckoning. When I went back on chemo this third time and we started the Signatera test, those are the blood tests that indicate whether, even if the scans show clear, there is still cancer in your blood somewhere, that it is still there, that there are cells they just cannot see yet — my Signatera, ever since the first one I have had, has been positive. That means I am not rid of the cancer, regardless of what the scans show. Then I saw the numbers increase. So I had to reckon with, “Okay, what am I going to do with this time that I have, and how am I going to negotiate having a chronic illness?”

It goes from thinking you are going to be cured to dealing with chronic illness and dealing with how you navigate life that way. Then I had to confront the idea: Am I okay with chemo for the rest of my life? Because that is where it was leaning. Probably less than two months ago, my oncologist said I would most likely be on chemo for the rest of my life. I might qualify for a liver transplant, which was a whole other scary option, because that is a huge major surgery. That is when I started thinking about second opinions.

I have been blessed with wonderful insurance, and that is truly a blessing. My insurance has a medical nurse and a mental health nurse who call me once a month, and I have fully taken advantage of that service. They have been so helpful and supportive in helping me talk through my thoughts on what is happening. My medical nurse asked me if I had thought about a second opinion, and I said I had not before now, but I am now. I need to see if there are other options out there. She said, “If they are in network, we cover it,” and I was like, “This is wonderful news.”

So I started doing some research and reached out to MD Anderson in Houston, and I was amazed at how quickly they responded. They were like, “Yes, come here, let us see what we can do.” When I met with my oncologist there, she said that I had received excellent care, which I knew I had. I have received nothing but top-notch care, excellent doctors. She said, “I am not sure that there will be other options,” and she was honest with me at the beginning, too. “But let us do some really high-powered tests and see what we can find.”

When I got the first results from those high-powered tests, they showed some things in my abdomen and lungs. My immediate reaction was, “It has spread even further,” and I really had a breakdown moment then. I went through that again: “I do not want to die in my 50s,” and I thought, if it has spread, it is going to go quickly. Then, when I talked to my oncologist again, she relieved me of those fears. She said, “No, that is not cancer there,” and when I met with my surgeon, he said the same thing. “The spots in your lungs are most likely scars.” I have had COVID three times. They could be scars from COVID or from some type of lung infection as a child or something. She said their machines were just so powerful that they were going to pick up any abnormality, but those are not cancer. I was so relieved.

I had a moment of confronting that my death may be far more imminent than I had pretended before. I faced a moment then, and my husband was so positive. He was like, “You do not know that yet. Do not buy trouble before you know.” I did, though. I honestly thought at that point that I needed to give specifics of the funeral I wanted. Honestly, before I had my colon resection, my husband and I did go visit an attorney and have all the paperwork drawn up for wills and living wills, and powers of attorney, and those kinds of things, because it made it real. I had to confront the reality of what may happen, and that is not pleasant at all.

The good news is that when my oncologist called me, she said she had presented the scans to the tumor board, and an amazing surgeon has agreed to do a liver resection. They actually think that I may not have to have chemo afterwards. So I am holding on. I am holding on to faith that that is what is going to happen. As I said, my liver resection is on December 23rd. But now, because I have been through these ups and downs, it is never out of my mind that this is what we are going to try now. I am not banking ever on it being over. I am praying hard that I will not have to do chemo again, and my oncologist is certain that we have lots of options later on if it recurs again.

The idea of recurrence is always there now. I will die, whenever that is — when I die, I will die expecting a recurrence. It is part of my life now.

Living with stage 4: hope, faith, and not choosing despair

I have to hold on to my faith. I have to believe that God will turn this into something good. He already has, and He will continue to turn what is yucky in human terms into something beautiful. I have seen it happen. I have seen it happen multiple times. It does not change the reality that death is close, but the fact that death is close has made me reckon with how I want to spend the time that I have.

I had a friend ask me, “How can you be so hopeful? How are you holding on to your faith?” I am like, “What is my alternative? If my alternative is despair, do I want to spend the time I have left in despair? No.” I do not want to spend a moment in despair. It has really made clear to me that, if before my diagnosis I was conscious of making every moment count, it was in a different way of making every moment count. I was very driven by this idea that I had to produce. I had to produce professionally. I had to produce in terms of service. I had to be working toward something good.

It is the same now, but it is a different good. It is not necessarily a production that is valued in the professional world. It is: how am I going to make every moment count for when I am gone, that I will have left a positive legacy, that I will have invested in the people that I love, that I will have invested in what I want to say to the world in terms of my writing, and what I want to leave for others?

It has made me hyper-aware of my privilege. I can stay at home and focus on my health and doing what I want to for the rest of my life because I was a public school teacher who built up retirement funds and has really good insurance. It has made me hyper-aware of that, and so I am driven to shout about the injustices that exist in our health care system, that people who do not have the insurance that I have are trying to work and have chemo. Some people lose their homes because they cannot afford treatments and have to choose between medicine and essential elements of life. As I said, this has made me hyper-aware of my privilege, so I feel like God is telling me, “You need to use this time to advocate for others. You need to use this time to raise awareness and to show others that there can be hope in a desperate situation.”

It all comes down to, I have to choose how I am going to spend whatever time I am given, and I do not want to spend it in despair. So where do I find my hope? I find my hope in God. I find my hope in the love of my family. I find my hope in spending time in the beauty that is nature, finding healing in nature, and sharing literature, because that is why I became an English teacher: to share stories. That is why I was interested in this. Our lives are composed of stories, and I want my story to be a good one, one of hope.

It has made me far more dependent. I mean, I did daily devotions before I was diagnosed, but my conversations with God are so much more real now, and I thought I understood what depending on God was when it came to my children growing up, when I could not protect them anymore. It has just intensified now. I have seen marriages break up. I have seen people get angry at God, but for me, if God and my family are what matter most, I want to use this time to draw closer to them, and they are what bring me happiness.

Redefining my identity after cancer as a writer, researcher, and outdoor person with chronic illness

Part of me takes pride now in calling myself a writer/researcher. That is what I call myself now, not necessarily a teacher. I am teaching one class adjunct at a local college, and I love that, but my body is not going to allow me to be a full-time teacher anymore. So I am trying to embrace it, and I take some pride in saying that I am a writer and researcher.

But gosh, my friends in my PhD program are headed to Las Vegas this week to the Literacy Research Association conference, and I am not going with them. That still sticks in my craw. That is not completely out of the picture in the future, but sometimes I get a little anxious, thinking that I am losing ground professionally. And then I have to readjust. I have to readjust.

Last spring, May of 2025, the school where I taught had a large AVID program. AVID is a particular program to help students get college-ready, and every year I taught a group of AVID students English 101 and 102. These are early college students who graduate with an associate’s degree with their high school diploma. The AVID director would invite me to a graduation celebration of those AVID students.

This past May, I was invited, and that was my last group. That was my last group of students to graduate from the school where I taught. The kids that are at the high school where I taught now, the kids that are there now, I do not know them. I did not teach any of them, and that hurts my feelings when I think about it. Then I have to readjust my thoughts: you are not teaching that group of students anymore. You are reaching a different group of students now, and you are reaching a different audience. You have a different purpose now.

My husband has said that I might not have pursued this part of my career had cancer not happened. I would have held on to those high school students so long. He was like, “This is giving you a chance to see what else you can do,” and that is what I have to think of it as.

My identity as an outdoors person — sometimes I wonder if others will view me as a fraud because, as I said, my research is adolescent literacy in the outdoor classroom, and I can still do small lessons outdoors. But the person who used to hike 7 to 10 miles and then come back to a tent, I cannot do that anymore because I have to be close to a bathroom. I can do short walks, and I try to as often as I can, but I really miss that part of my identity. I always have to be conscious of where the bathroom is and whether I have taken Lomotil so that I can go out in the woods.

That part of my identity, I am struggling with losing that part, and I have to reshape it. I cannot run right now, one, because of chemo, and two, because of neuropathy. So I am like, well, when I can start training again, when I have the energy to start training again, maybe I can start doing race walking instead of running. Then I see, well, this is okay. You can be an example, a spokesperson for what it means to be outdoors with a chronic illness. As I said, it is constantly readjusting my thinking.

My message to newly diagnosed cancer patients and caregivers

First message is for caretakers: caretakers have to be taken care of, too. I have seen my husband. We have recently had to help his mother move into assisted living as she is getting older, so he is taking care of an elderly parent and me, and he has worn thin, just frazzled. He needs time where he can relax, where he can do what he wants to do. Sometimes that means away from all humans. Sometimes he needs to be by himself, and sometimes asking him, “What would you like to do?” is even too much for him. He is just like, “No, you just decide and let me chill.” So I definitely want to say caretakers need to be taken care of, too.

In terms of being diagnosed, it is okay to feel what you feel. It is okay to feel it and acknowledge it. One of the things I try to do is say, “Okay, this is fear that I am feeling right now,” or, “This is jealousy that I am feeling right now.” It is okay to feel what you feel. Know that people are not going to understand unless they have been through it. They are not going to understand. Some of them will want to understand. Some of them will be afraid and step back.

Some people will say things that are hurtful and they do not intend to be hurtful, and it is okay to say, “That was hurtful” — even if you do not say it in front of them — to acknowledge it again, to say, “that hurt my feelings.” Process your feelings. Acknowledge them, and when you are feeling down, say, “It is okay to feel down now,” but know that it is not good to stay there. It is not good to stay down.

There is hope. We can keep going. Our lives may not look the same, but there is beauty there, too. There is beauty in learning what your body can do, even as it is battling chemo side effects. There is beauty in learning that you are more than what your face says. The women’s issues — losing hair and things like that — I have really had to reckon with my vanity, and that is what it is. It is vanity. Beauty truly is more than what is on your face.

The friendships that last while you are battling cancer are the real friendships. Those are the ones with the people who truly care about you, and those are the ones worth holding on to. Those are the ones that will see you through it, whether it is the friendship with my husband and my friends that carry me to treatments, the ones who pray with me, or the ones who send me sweet messages. Those are what carry me through.

it is okay to feel down, but try your best not to stay there. Try to change your thinking to see where the beauty is. What is the message God is sending you? What is there to see that you did not understand before? Maybe think of it as a new quest, a new challenge in life. As an English teacher, I used to say, “This is a plot twist in my story. Where is this going to take me, and what new things am I going to discover?”

It does not mean that you are not going to be in pain, both physical and emotional, but again, what is there to learn from the pain? What is there to see in the pain? How does that make you more sympathetic to others’ pain? Where is this journey going to take me now? I have learned things about teaching from my experience as a patient. So there is beauty to be found. There is hope, and there are lessons to be learned.

Kristie C. colon cancer
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Categories
Cardia Cancer Esophagectomy Metastatic Partial gastrectomy Patient Stories Stomach Cancer Surgery Treatments

Stage 4 Cardia Cancer Transformed Luwen’s Life and Perspective

Stage 4 Cardia Cancer Transformed Luwen’s Life and Perspective

Cardia cancer, a rare and aggressive cancer at the junction of the stomach and esophagus, fundamentally changed Luwen’s day-to-day life, career aspirations, and connection to her body and community. Diagnosed in Paris in December 2024 after months of misattributed symptoms, her experience reveals the often-overlooked complexity and adversity surrounding late-stage cancer diagnosis.

Interviewed by: Keshia Rice
Edited by: Chris Sanchez

Immediately preceding her diagnosis, Luwen balanced the challenge of beginning her career in theater with daunting physical symptoms, including persistent back pain, chest burning, and a profound sense of unease. As her symptoms intensified, she underwent multiple consultations and procedures. The French healthcare system posed its own hurdles, involving both public and private pathways, and required out-of-pocket payments until her diagnosis of cardia cancer, a kind of stomach cancer, categorized her illness as a long-term condition eligible for government coverage.

Luwen S. cardia cancer

The emotional toll of stage 4 cardia cancer was magnified by isolation, as Luwen navigated both the diagnostic process and her mother’s concurrent battle with breast cancer, while extended family remained abroad. Self-advocacy proved essential; despite repeated dismissals from medical professionals and friends attributing her symptoms to stress, she persisted, ultimately insisting on crucial tests that revealed the true nature of her illness.

Treatment transformed every aspect of Luwen’s life. Eight months of chemotherapy and immunotherapy followed by a major surgical resection altered her physical relationship with food and her body, requiring new dietary habits and a lasting regimen of medication. The physical challenges were matched by emotional transformation; what mattered shifted from professional achievement to peace and well-being.

For others living through stage 4 cardia cancer, Luwen’s story offers important lessons: trust in oneself as the expert of one’s body, the necessity of persistence within medical systems, and the possibility of redefining one’s priorities after illness. Her experience is a testament to the power of self-advocacy and adaptability, and to the meaningful changes that can result from even the most difficult diagnoses.

Watch Luwen’s video above and read through her edited interview transcript below. Both will provide insights into why and how:

  • Advocacy matters: being persistent to get the correct diagnosis is vital, especially when symptoms are minimized
  • You are the real expert on symptoms; trust yourself when you know something’s wrong
  • Major illness like cancer often forces patients to reconsider what matters most in life
  • Support networks such as family, friends, and therapists, help patients endure treatment and uncertainty
  • Transformation is possible: Luwen’s priorities shifted toward peace, self-care, and authentic living

  • Name: Luwen S.
  • Diagnosis:
    • Cardia Cancer
  • Age at Diagnosis:
    • 25
  • Staging:
    • Stage 4
  • Symptoms:
    • Backaches
    • Heartburn and acid reflux resulting in vomiting bile
    • Fainting spell after eating
    • Fatigue
    • Inability to swallow
  • Treatments:
    • Chemotherapy
    • Immunotherapy
    • Surgeries: esophagectomy, partial gastrectomy
Luwen S. cardia cancer
Luwen S. cardia cancer
Luwen S. cardia cancer
Luwen S. cardia cancer
Luwen S. cardia cancer
Luwen S. cardia cancer
Luwen S. cardia cancer
Luwen S. cardia cancer
Luwen S. cardia cancer
Luwen S. cardia cancer
Luwen S. cardia cancer
Luwen S. cardia cancer
Luwen S. cardia cancer

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.



My name is Luwen

I was diagnosed in December 2024 with stage 4 cardia cancer. The cardia is basically the junction between the esophagus and the stomach. I was diagnosed in Paris, and I live in Paris.

I had just finished university and was getting my first job in theater. I’ve always had an interest in theater, and I was really happy because I was working on this big production. I remember it because my cancer basically started to grow at the same time that I got my job. So, during the summer of 2024, I was very stressed. I was trying to find a job after my internship and couldn’t find one. As I interviewed for many positions and eventually got the job I wanted, my symptoms worsened.

Alongside this, my family lived in China, and my mother was diagnosed with breast cancer in November, a month before my own diagnosis. I did a lot of back-and-forth travel between China and France, while my grandparents lived in America, so I was used to traveling. But, yeah, that was pretty much my life before I got cancer.

My initial symptoms

It was really strange because I started with back pain. Basically, I had metastasis along the spine, and those were my first symptoms in the summer of 2024. It started in June. I remember this because I was at a Buddhist retreat, sitting cross-legged all day for a week, so I thought it was the retreat that had caused the pain. I started to take ibuprofen and paracetamol, hoping to ease the pain, but it didn’t help.

In August, I developed chest burn, which I didn’t know was acid reflux at the time, and which I later learned to name. That was my mistake: I called it acid reflux, so the doctors just stuck with that diagnosis, saying there was nothing else wrong. I was misdiagnosed for six months, going from doctor to doctor, always being told I had nothing. All the while, my back pain and chest burn continued to worsen.

I remember once in September, it was the first real alarm in my head. I woke from a dream where I was on a sterilized hospital table, doctors trying to get something out of my stomach, and they couldn’t. I woke up to realize the pain wasn’t a dream; it was very real. That’s when I realized I really needed to see a gastroenterologist, but the first one I saw was really bad and misdiagnosed me.

Navigating the French healthcare system

In France, you typically have a primary physician. I saw mine at the end of August, after I’d started my new job and when my symptoms had worsened. One night, I had a really bad hunger pain in my stomach, and I knew that eating would ease it. So, I went to eat, then fainted, which had never happened to me before. I was lucky I didn’t hurt myself.

After that, I saw my primary care doctor, who said I needed a physiotherapist for my back, and that the chest burn (acid reflux) could wait until November for a gastroenterologist appointment. So, I started physiotherapy, which didn’t help. In September, after continuing to wake in pain, I realized I couldn’t wait any longer.

France has an app for scheduling doctor appointments, but it’s hard to know which doctors are good; you have to check reviews online or hear about them through friends. No one around me knew a reputable gastroenterologist, so I chose from the limited, less-recommended options available on short notice. Appointments with specialists are particularly hard to get.

There’s public healthcare, where you don’t pay out of pocket, and private practitioners, who set their own rates. I paid my private gastroenterologist €80 per visit, three times total during this process. I also returned to my primary care doctor about ten times in three or four months, but he couldn’t figure out what was wrong. I underwent many scans and imaging, some of which I had to pay for, depending on whether it was public or private healthcare.

I was really lucky that after my diagnosis, everything switched to 100% public healthcare. I didn’t have to pay for my treatment. But during the diagnosis period, I spent about €2,000 to €3,000 on doctors and scans. In France, once you’re categorized as having a long-term disease, anything related to it is covered by the government. So, after diagnosis, cancer care was paid for.

I processed everything while I was alone

You have to keep in mind that I was alone in Paris. My parents were in China, and my grandparents were in America. 

I was navigating all of this by myself, getting more stressed with my job, when I got the news that my mother was also sick. It was a lot to process alone.

It was weird, trying to get an answer while everyone around me kept saying, “You’re insane, you’re making this up, it’s just stress.” I heard that so many times that eventually, I began to believe it myself, despite knowing deep down it was more than stress. 

I even started doubting my own symptoms because of all the repeated dismissals from those around me.

My body broke down, and I doubted myself

At work, my boss was running a show and an exhibition, and I was supposed to go to Marseille for two weeks for my job. I stayed for just two days before my body gave out. 

I had driven myself to the breaking point. Everything happened so quickly that, only in January, right before starting treatment and after returning from Christmas holidays, did I realize just how hard this all had been to take on alone.

I don’t think I trust the health system. Even though I am cured, thankfully, it’s hard for me to see a doctor and believe they are telling me the whole truth or getting to the root cause. In my case, my gastroenterologist just treated the symptoms (acid reflux) with omeprazole, which masked the symptoms and delayed realizing the underlying (cancer) problem.

My persistence led to second opinions and the key endoscopy

When my body finally broke down, I was sent back to Paris and put on sick leave. That week, I saw about four gastroenterologists, but for some reason, none wanted to give me an endoscopy. I had known since October that I needed one, but I wasn’t taken seriously.

I finally texted a friend, who knew a really good private gastroenterologist. I emailed him all my symptoms on a Sunday night and was lucky; he let me come in the next day. I decided I wouldn’t leave without an endoscopy scheduled. I had to exaggerate my symptoms, saying I couldn’t swallow water or eat (even though I could still drink), just to be taken seriously.

At my endoscopy, the doctor said, “Don’t worry, it’s probably nothing; we’ll just give you more omeprazole.” I insisted that omeprazole hadn’t helped me. He told me he’d call after the procedure to say everything was fine, but when I woke up, he was there in person. He said, “Do you have a minute? I have bad news for you.”

Later, he returned to my room and told me, “You have a lesion; it also has an ulcer, and it might be cancerous.” That was the first time I heard the word cancer regarding myself. I felt so relieved: “Oh my God, I’m not crazy. I’m not making things up.”

From there, everything moved very quickly. Doctors aren’t technically allowed to tell you outright that you have cancer, so he just said, “It might be cancerous.” But he made sure all tests happened within a week, which is rare for the French system. My endoscopy was on December 5th; my first meeting with my oncologist was on December 16th. The weekend before that, my friend from the UK came to stay with me because I was so stressed.

When I was finally able to process information, I realized how serious this was: scans, blood tests, a glowing spot in my stomach. I didn’t even know what cardia was until I looked it up. Everything fell into place piece by piece.

My treatment experience

It got quite bad before I began treatment. I was in constant pain, couldn’t eat or drink, and was losing weight week by week. I don’t like to say I stared death in the face, but it did feel close. During this time, after my diagnosis and before starting treatment, I returned to China to be with my mother, who had just started her own breast cancer treatment.

Having my mother go through chemo ahead of me meant I had someone who understood each step. I knew how to pack a chemo bag, what to expect, and how symptoms might develop. I was relieved to learn I wouldn’t lose my hair.

My first chemo was the worst. I was so sick I could barely get out of bed; I was overcome with nausea. Fortunately, my body responded well to immunotherapy. By the second chemo, I could almost eat normally again. By the third, I had regained some strength; by the fourth, scans showed the metastasis in my spine was completely gone. I had chemo and immunotherapy for eight months, and the cancer was gone in six months.

I had surgery, and how I recovered from it

After eight months of chemo, I was cancer-free, but we weren’t sure it was totally gone. Surgery (esophagectomy) was needed to remove the cardia and ensure there were negative margins. This meant removing most of my esophagus and a third of my stomach. 

Now, my stomach is higher, and I don’t have an esophagus. Food falls directly into my stomach and then into my intestines.

Learning how to eat after that is difficult. I had surgery on September 8th, and as of now, I’m still recovering. I’ve lost about 10 kilos (~22 lbs). Eating requires extra care; monitoring oil, sugar, and food quantities to avoid dumping syndrome, which causes stomach pain, nausea, and diarrhea when food moves too fast into the small intestine.

Despite losing weight and always having had a sweet tooth, I have to be careful now. The way my body processes food has changed, requiring lifelong meds for acid reflux. It’s challenging, but it pushes me to adopt healthier habits. My life, needs, and desires have all changed.

Moving forward, and my new priorities

Cancer has taken away a lot, but weirdly, it has given me a lot too. 

I used to work as a theater producer, but lost the desire to continue due to the stress and ego management. What I want now is to be happy, peaceful, and healthy. It’s no longer about pleasing others; it’s about making myself feel good and putting myself first.

I am not on maintenance therapy; all treatment ended before my surgery. Now, I just get regular scans every three months, then every five, then yearly. 

It is behind me in the sense that I don’t want to think about it, but surveillance and the reality of stage 4 cancer mean you never quite feel “cured.” 

My biggest fear today is that what comes back could be worse: pancreatic, stomach, or lung cancer. The word “cancer” will always be a part of my life now.

How I coped with the hardest moments

During treatment, I often lost my mind. My mother came back to France to care for me while she was ill, and I cared for her too. Once, she had a kidney failure episode, and I rushed her to the emergency room; if I’d been 20 minutes later, she could have died. That was on Mother’s Day.

What got me through was calling my best friend to cry and having therapy. I was surrounded by personal and healthcare therapists. 

Ultimately, it was the mentality of, “I don’t get a choice; I just have to keep going. You can cry all you want, but you have to do the next round of chemo.” 

I was lucky that my treatment worked, which made it a little easier to endure.

Lessons for young cancer patients

I was 25 when diagnosed. Having cancer at a young age is often dismissed; people expect youth and health to go together. Being young and female, women’s pain is often minimized, so I had to exaggerate symptoms to be taken seriously. My oncologist told me, “You’re lucky; apart from the cancer, you are otherwise very healthy because you are young.”

Most patients I saw during chemo were in their forties or older. But statistics show more young people getting cancer, even if it’s still rare. The main thing I would tell other young people: you know your body best. If you know something is wrong, trust yourself. 

Cancer taught me how to advocate for myself, how to say, “No, you are wrong; I am in pain.” If a doctor doesn’t listen, see someone else until you get an answer that satisfies you.

I didn’t really connect with any other young people with cancer at the same time. I mostly navigated it by myself, though I had friends, family, and a lot of therapists in my life. Illness sheds false friendships, but it also brings new, real ones closer.

Healing, recovery, and looking forward

Words like “recovery” and “healing” have new meaning for me now; they exist where before they didn’t. 

When you’re young, you’re focused on chasing the next thing; when you fall off that hamster wheel, you realize you must learn a new way forward, and it isn’t just about health. It’s about building a life again after illness.

I hope I get to do the job I want; publishing and writing, maybe publishing a book someday. I pay more attention now to health, food, and exercise. It’s scary to start over, but exciting. There are so many new opportunities and people to meet.

Statistics were not on my side. My oncologist told me that if immunotherapy hadn’t been available, I would have had only 4-6 months to live. That made me realize how far medicine has come. I really did beat the odds. 

Still, I feel I’m on borrowed time and need to enjoy it fully while I have it.

My final reflections

I survived; long story short, I survived. It was not easy, and I’m very tired. 

I tell my best friend that if cancer does return, I’m not sure I want to fight it again, but we’ll see when we get there. 

Hopefully, I will never have cancer again.


Luwen S. cardia cancer
Thank you for sharing your story, Luwen!

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Maria C. stage 4 stomach cancer

Maria C., Stomach Cancer, Stage 4 (Metastatic)



Symptoms: Rapid weight loss, fatigue, inability to hold food down

Treatments: Chemotherapy, surgery (robotic distal gastrectomy), radiation therapy
...
Jeff S. feature profile

Jeff S., Stomach Cancer, Stage 4 (Metastatic)



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

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



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

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

Amy M., Stomach Cancer (Gastric Adenocarcinoma), Stage 3B



Symptoms: Unexplained weight loss, fatigue, blood in stool, stomachache, trouble swallowing

Treatments: Chemotherapy, radiation therapy, surgeries (gastrectomy, partial pancreatectomy), immunotherapy
...
Graham L. stomach cancer

Graham L., Stomach Cancer (Diffuse Gastric Adenocarcinoma with Signet Ring Cell Features, Poorly Differentiated), Stage T1bN0



Symptoms: None; a stomach polyp discovered during his annual screening tested positive for cancer

Treatments: Surgeries (total gastrectomy, lymphadenectomy)
...
Mary Jane B. stage 4 stomach cancer

Mary Jane B., Stomach Cancer, Stage 4 (Metastatic)



Symptoms: Fatigue, night sweats, sharp back pain, bloody stool, unexplained weight gain, nausea and vomiting, chest pain, shortness of breath, severe anemia, loss of appetite and early satiety, sudden and intermittent dry cough, persistent stomachache, distended abdomen, frequent headache, forgetfulness
Treatments: Chemotherapy, targeted therapy (anti-HER2 receptor monoclonal antibody), immunotherapy (PD-1 inhibitor)
...

Categories
Antibody-drug conjugate Cancers Chemotherapy Chemotherapy port installation Gastrectomy Gastric Adenocarcinoma Immunotherapy Metastatic Metastatic Patient Stories Stomach Cancer Surgery Targeted Therapy Treatments

Stage 4 Stomach Cancer Surgery at 28-Weeks Pregnant: Arelly’s Surprising Story

Stage 4 Stomach Cancer Surgery at 28-Weeks Pregnant: Arelly’s Surprising Story

When Arelly received her stomach cancer diagnosis, a look back at her experience revealed just how critical awareness and advocacy are for patients navigating troubling symptoms. Her life as a mother and wife was upended in early 2024, moments after surgery exposed a malignant tumor. Her case underscores the urgent need for better screening and listening to every patient’s voice, particularly for symptoms like fatigue and persistent pain in individuals who are often told they’re “too young.”

Interviewed by: Taylor Scheib
Edited by: Chris Sanchez

Initially overlooked by medical providers, Arelly’s symptoms, including pain after gallbladder removal and unusual exhaustion, were attributed to routine postpartum changes. Yet, a growing mass during her third pregnancy drove multiple ER visits and eventually life-saving surgery. The path to her stomach cancer diagnosis was marked by self-advocacy, perseverance, and partnership with her husband, who documented her symptoms and supported her emotionally through critical hospital stays.

Arelly R. stomach cancer

Family remains Arelly’s anchor and inspiration. Her experience balancing motherhood and cancer treatment highlights the unique challenges facing patients with young children. She describes learning to cherish “sunshine hour” visits, communicate openly with her kids, and plan family time around her treatment cycles, showing that quality of life is built on routine moments together. Online communities and peer support have helped her process grief and find solidarity with other patients.

Arelly now advocates for early screening and self-kindness, urging others to use their time well and embrace lessons learned. Her words, “Time is your biggest asset,” aim to empower those facing gastric cancer to prioritize courage, connection, and compassion in redefining their experience.

Watch Arelly’s video above and read through the edited version of her interview transcript below for more on how:

  • Listening to one’s body and advocating for answers is vital when symptoms are overlooked or dismissed
  • Family support, routine, and open communication are crucial in balancing treatment and parenting
  • Community connections with other patients provide essential emotional support and solidarity
  • Time spent with loved ones is the most valuable asset for any patient
  • The experience transformed Arelly into a stronger advocate, teaching her to value mindfulness and kindness in daily life

  • Name: Arelly R.
  • Diagnosis:
    • Stomach Cancer (Gastric Adenocarcinoma)
  • Age at Diagnosis:
    • 38
  • Staging:
    • Stage 4
  • Symptoms:
    • Nausea
    • Blood in stool
    • Side pain
    • Extreme fatigue
    • Excessive burping
  • Treatments:
    • Surgeries: gastrectomy, port placement
    • Chemotherapy
    • Immunotherapy
    • Targeted therapy: antibody-drug conjugate
Arelly R. stomach cancer
Arelly R. stomach cancer
Arelly R. stomach cancer
Arelly R. stomach cancer
Arelly R. stomach cancer
Arelly R. stomach cancer
Arelly R. stomach cancer

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.

The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.



My name is Arelly

I was diagnosed in late February of 2024 with gastric adenocarcinoma.

I grew up in Orange County and had a pretty happy childhood. My parents made it a point to go on vacation to Mexico every year, which is where my family is from, so I have really good, embedded roots there. I have three kids, and I am married. We just had our fourth anniversary last week.

I love to scrapbook. We love nature and visiting national parks. That is kind of our hobby, or was our hobby before I got diagnosed. We love music and going to concerts, and we spend a lot of time doing that as a family. Family is really important to me, and so is spending time doing things that I love, like music and the arts.

We saw Bruno Mars, and that was an amazing experience. We have seen Alicia Keys, Coldplay, and others. That was all pre‑diagnosis, and post‑diagnosis, I am like, okay, we have to see this person and that person. Bruno Mars is the number one.

I love shows that don’t allow recording because they make you be in the moment. We are on our phones all the time.

First red flags during my pregnancy and postpartum

The beginning for me really starts with my middle child’s pregnancy, my toddler, who is going to be four in May. I had a CT scan that was normal, and that pregnancy looked normal on paper. I had a lot of pain during it, but overall, everything was considered fine.

After I gave birth, I went through all the postpartum things. I ended up having my gallbladder removed about a year after he was born. It was via C‑section, and I was having a lot of pain on my right side. They removed my gallbladder, but after the removal, I was still having pain. I kept saying, “I am still having pain on the right side,” over and over. They would answer, “That is normal because you just had surgery.” Anytime I brought up a concern, it was, “That is normal.” Stomach issues were explained away as part of learning to function again without that organ.

My husband and I wanted to grow our family, so we decided to try for another baby. I had a miscarriage and then got pregnant again. Everything seemed to be flowing. I was not feeling anything out of the ordinary, just tired. I had a toddler, and I was pregnant. Then, out of nowhere, I had a mass protruding out of my umbilical area.

I kept bringing it up at my OB appointments. They said it might be a hernia, but they were not sure. They would just check it and send me on my way. As my stomach continued to grow, the growth pushed the tumor out more, to the point where I had two ER visits. On the last ER visit, there was leakage from the mass. That leakage concerned the surgeon enough to say, “We have to take this mass out. We do not know what it is. Your baby is going to be fine, but we need to remove it.” I was about 28 weeks pregnant in 2024.

The next day, they removed around a 15 cm mass. They told us it was a malignant tumor. That was when my OB recommended transferring my care to another hospital that could handle both the high‑risk pregnancy and the new cancer diagnosis. Hearing the word “cancer” and then “stage four,” and then phrases like “three to six months to live,” was devastating. I had pregnancy, postpartum, symptoms that mimicked postpartum, and a recent gallbladder surgery, all happening around the same time. It is all masked within everything you are already going through. It felt like we hit a wall, everything slowed down for a second, and then everything picked back up again. We have just been running with it since.

Symptoms that were overlooked or misattributed

The most prominent symptom was fatigue — extreme, extreme fatigue. There was one time when I had blood in my stool. I assumed it was hemorrhoids because I was pregnant, so that is what I told myself. Besides that, I cannot pinpoint anything dramatic. I did not have constant headaches, and if I did, I would think it was something like high blood pressure from pregnancy.

Mostly, I was just always exhausted, physically and mentally. Later, the symptoms became more visual. I could feel and see something strange in my belly. Looking back, I would also include the right‑sided pain, which I had treated as “normal” because I had been told it was normal after gallbladder removal. Now, when I talk about it, I can see that pain is a symptom too.

Feeling dismissed by doctors, and taking the H. pylori test

I do feel like I was dismissed at times, although there were also moments that made me think, “Why are they ordering this?” After my gallbladder removal, I kept going back to my regular doctor, saying, “I am feeling these things again. What is going on?” After I complained three or four times, he finally said, “Let me give you this H. pylori test.” I did the test before I got pregnant with my third, and it came back negative.

I know H. pylori can be a cause of some gastric cancers, but I do not really sit and wonder what caused mine or what I could have done differently. I do not ponder that because there is no point. That is the one thing he did, ordering that test.

Around the same time, my best friend had just gone through her own journey with breast cancer while pregnant, so I was very cancer‑aware. She is a survivor now, but back then, it was very fresh. I told my doctor, “My friend just had breast cancer. When should I get checked?” Instead of something like, “You should start at this age,” he said, “You know cancer is not contagious, right?” I remember freezing and thinking, “That is not what you are supposed to say to me.” I do not know if he realized he said it like that.

It was during COVID, and many appointments were by phone or in rushed in‑person visits. I do not want to say I lost trust in doctors, because there are amazing care teams out there, like the team I have now; but they are human, and sometimes they just do not see things or think about them. That comment and the repeated dismissal of my symptoms made me step back and lose trust in some of the medical staff at that time.

Why early screening and advocacy matter so much

That whole experience ties into how I feel about screenings, especially for gastric cancers. Screenings are so important. Right now, I am very passionate about advocating for earlier screening, because we are seeing cancer in younger people so often. That is one reason I do things like this: to create awareness that you are never too young to get cancer. Children get cancer. So why do we have these strict age protocols telling us when we “qualify” for colonoscopies, endoscopies, mammograms, and so on?

We need to take into account people’s histories and symptoms and what patients are actually saying. If someone keeps saying, “This does not feel right. I feel this and this,” that should matter. Doctors have the expertise; we do not. We are the patients. They are there to help us and to listen.

Advocating for myself in the emergency room

By the time I was going to the ER repeatedly, my advocacy became very simple and direct. It was like, “I am here now. I was here two days ago. You sent me home. I cannot be sent home today. Please, what is going on? Please take a look at this.”

It is important to be able to say, “I know my body. I know what is normal and what is not. Please listen.” The sad part is, I have heard many stories from people I have met in the stomach cancer community who said all those things and still were not heard.

So a lot of it becomes repetition: “This is not right. This is not right. Please look into this. What tests can I take? This is not my normal.” At one point, I was literally saying, “Look at this. This is not normal,” because sometimes they would not even physically examine me, just listen and move on. It was crazy.

My husband’s support and documenting the tumor

My husband has been such a key part of this. In the beginning, he took a lot of pictures of the tumor. It is funny because we have different sets of photos. I have certain pictures in my phone, and he has others in his. He took pictures of the tumor as it progressed. I did not want to look at them; I did not want to even see my own belly button with the tumor pushing out.

He did it so that when we went to the ER and doctors needed context, he could say, “This is what it looked like a week ago, and this is what it looks like now.” That helped us show that things were not improving; they were getting worse.

The last time we were at the hospital before they removed the 15 cm mass, the mass looked red. In the report I read later, they said it was infected. It had gotten to the point where the surgeon on call around 7 p.m. was worried about sepsis. He said, “Whatever it is, we have to take it out, because you can die of sepsis.” Hearing “sepsis” before hearing “cancer” out loud was very scary.

My husband has always been there, especially when I could not articulate or face certain realities. When I had blood clots, he would take pictures to track whether they were getting better or worse. He tried not to panic, because if he panics, I panic. He is the calm, and I am the “That does not look right” person. We really balance each other out in that way.

Hearing “cancer” while pregnant

By the time I officially heard “This is cancer,” I had already had major abdominal surgery while pregnant. I was barely moving and barely conscious in a small hospital room. I already had a feeling it was cancer. My OB called me because he was not at the hospital. He said he needed to come talk to me. I said, “I already know. Can you just tell me?” He did not want to tell me over the phone, but I insisted, and he finally said it looked like cancer and that he wanted to transfer me to UCI.

Once I was transferred, it became a night‑and‑day difference in care. They monitored me around the clock because they had two lives to keep stable: me and the baby. At UCI, there was a team of about ten people involved: baby specialists, oncology teams, and people focused on post‑surgery recovery. They were constantly checking me and checking the baby, trying to figure out exactly what type of cancer it was.

It was overwhelming. Sometimes there would be ten to fifteen people in the room in white coats talking to me at once. Even now, my husband and I sometimes sit in the quiet when the kids are asleep and ask, “Is this life even real?” It still does not feel real sometimes. I can picture myself in that hospital bed, in pain, with everyone talking, and I am half-listening, half-tuning them out because it is too much to process.

How I knew something was wrong before I got diagnosed

I had a sense that something was going on with me even before the big tumor showed up. Because I am over 35, I had NIPT testing during my pregnancies. It is genetic testing for the baby, and everyone thinks of it as a gender test, but it looks at more than that. With my third son, Benjamin, I had to do the test twice, and both times it came back inconclusive.

When I spoke with the genetic counselor and looked back at the report, there was a note at the bottom saying they could not get genetic information for the baby because something in the mother’s DNA was impeding it. Of course, I went online and started researching why other people’s NIPT results were inconclusive. I went down that rabbit hole and started wondering if something was going on with me.

I was also dealing with a lot postpartum with my middle child and was already in counseling. A lot of my biggest fears centered around not being able to take care of my children and something happening to me so that I would not be there for them. Looking back, I feel like my subconscious was preparing me, telling me this might be my reality.

The fact that the NIPT had been normal for my toddler but not for the baby also gives me a rough timeline. I know that in one year, I likely did not have cancer, and by the next, I did. That shows how quickly this type of cancer can progress. The type I have is rare and spreads like fire.

Motherhood, hospitalization, and protecting my kids emotionally

When I first got my diagnosis, I did not worry about my unborn son’s safety as much as you might expect. I felt deep down that he would be okay. I did not even focus much on myself. I just had this feeling, pregnancy‑wise, that he would be fine.

What crushed me more was being away from my older two kids for those two weeks in the hospital. My oldest was around seven, and my son was about one and about to be two. They did not really know what was going on. All they knew was that Mommy and Daddy had disappeared to the hospital for a long time. My parents and family stepped in and cared for them.

There were lots of video calls. We would tell them, “Mommy is at the hospital,” but I did not say, “Mommy has cancer.” They do not know what that is. We just tried to reassure them that I would come home soon.

When I started feeling better, the hospital had a “sunshine hour” where I could go outside for an hour, even while hospitalized. I would be hooked up to my IV while my husband wheeled me outside in a wheelchair. The kids would visit, and we would sit together and have something like a little picnic or cafeteria time as a family. I was still pregnant and recovering from surgery, but those visits meant a lot.

Eventually, I came home, and we focused on spending as much time together as we could before chemotherapy started while I was pregnant. I had a port placed, went through endoscopies, colonoscopies, and other testing. I got to be with my kids before Arthur was born.

After that, life became chaotic. There is the cancer itself and being a cancer patient; there is also being a mom of three, with two of them being two and under. That balance is what has kept me going. They are my motivation. I still deal with a lot of mental battles, but they keep me grounded.

How cancer affected my identity and personality

Cancer does not just attack your body; it attacks your personality and who you thought you were. I am in the middle of figuring out who I am now, accepting that I am a mother of three and also a terminally ill person who has to think about leaving all these things behind. That is something no one prepares you for. Almost as soon as you get a serious diagnosis, people start asking about your “dying wishes.” I have not confronted all of that. I process it in small pieces.

People who are not in this situation will say, “Take lots of videos. Take lots of pictures. Live your best life.” And I do try to do those things, but I am also so tired. So I focus on quality time. I want my kids to remember that when I felt okay, I was present with them. I know there are many days when I am knocked out after treatment and just have to rest, but when I do feel okay, I make an effort to say to my husband, “Let’s do something with the kids this weekend,” even if it is just the zoo or the aquarium.

I also had to tell my oldest daughter the truth at some point. She is going to be ten, and she is very aware. I was diagnosed in late February, but I waited until school was out around May or June. I wanted her to finish the school year without that weight. Over the summer, I told her, “Mommy has cancer,” so we had time to talk and for her to process it. Just yesterday she said, “Mom, I wish you did not have cancer,” and I told her, “Me too, baby.” I am glad she knows. I do not want her to feel, later on, that I hid it from her. With the little ones, it is different. My three‑year‑old just knows I am sick and that I go to the doctor, and that I have a port he can touch. He does not understand cancer.

Quality of life, treatment cycles, and everyday joys

Quality of life has become central to how I navigate treatment. Over time, you become an expert in your own body. I know my regimen: I get treatment every three weeks. The first week tends to be okay, the second is usually the worst, and then I get a few better days. We plan our lives, and especially family outings, around those better days.

On days when I am present, I try not to overthink it. We just do normal things: read a book together, work on my son’s preschool projects, or scrapbook with my daughter. I have always loved scrapbooking, and now I am teaching her how. Communication with my husband is key. I will say, “These are the days I think I’ll feel okay; let’s try to do something then.” Sometimes it does not work out, and the day is worse than expected. In those cases, I try to give myself grace and accept that it is okay not to feel well.

My husband has also been a 100% caregiver through this, and I admire him so much. He potty‑trained our toddler, handles diaper changes, and takes care of both the kids and his wife with a terminal illness. I try to remember to ask him, “How are you feeling?” because he rarely gets a break. When he does get a break, I am thinking, “Who takes care of the kids then?” Our parents help as much as they can, but they are older, and we try to save that help for when it is really necessary.

We also try to carve out time for our marriage, not just parenting. On good days, we might go to a concert or try to do something just for us. When I am feeling okay, I will say, “You take a break,” and I will be the supervising adult once the kids are asleep, hoping my body cooperates and there are no emergencies.

Hair loss, body changes, and rediscovering myself

My first year of treatment was strange in that I did not lose any hair. I did not look like what people imagine a cancer patient looks like. There is no one “look,” but society tends to picture someone thin, frail, and bald. I am a heavyset woman, and I still had my hair then, so I did not fit that picture. Then I started a new treatment, and with the very first infusion, I lost all my hair. That was when it really hit me.

Hair is wrapped up with identity. You think you will not care that much, but you do. Chemo also makes you exhausted and changes your skin. I will look back at a picture of me when I was pregnant and see this glow. Then I look at myself now, and I look different. I often put on makeup, and my husband will ask why. I tell him, “I do not want to feel like I am dead.”

It is not just physical. A heavy diagnosis brings heavy thoughts. You have to confront things like death and how it might happen. I was preoccupied with that in the beginning. Now I try to avoid overly dwelling on it. When I feel myself going down a bad spiral, I let myself feel it fully for a day. I ask, “What else have I been holding back? What else do I need to feel?” I let it all out. The next day, I say, “That was yesterday. Today is not going to be that day,” and I try to start over with better energy.

Holding on to small happy moments

Happy moments now are usually small things that might be easy to miss. I used to love cooking. That was my love language. If my husband liked noodles, I would think, “Let me make this noodle dish,” and it made me happy. Earlier this year, I had ascites so badly that I needed to be drained twice a week. I could not walk or even shower on my own sometimes, let alone cook. Cooking was just not possible.

When I do have a day where I can cook, it feels huge. I notice it, and my daughter notices it. She will say, “Mom, thank you for this food,” and I recognize that I did something important just by making a meal. Those are the happy moments now: sitting at a table, eating together, and being able to participate.

Sometimes our evenings are staggered. My daughter comes home from school, and we are immediately in night‑routine mode with the younger ones. We do not all sit and eat together. On the days we do manage to eat at the same time, we notice it. We say, “We are all here together,” and that becomes the memory we hold onto.

Finding stomach cancer community and online support

At first, having this diagnosis is very isolating. You do not know where to go. My best friend was my first lifeline because she had gone through breast cancer. We talked almost every day. Outside of her, I started finding online support in stomach cancer‑specific groups and foundations. I joined groups where people have gastric cancer like me, including younger parents.

We have lost many people from those groups, and it hurts because they become like family. It is powerful, though, to connect with people who share similar circumstances; not just the same cancer, but also being young parents, dealing with caregiving, finances, fear, and all of it. Sometimes we talk about cancer; other times we talk about normal things just to feel human.

November is a heavy month in the stomach cancer world because it is Stomach Cancer Awareness Month, and also when we tend to remember and lose many friends. There was a woman named Rita whose situation really resonated with me. My kids are half Cantonese, and her kids were half Cantonese too. She left behind very young children. Those similarities hit you hard.

We also have regular support calls every couple of weeks. Recently, we found out that one of our sisters is going into hospice because there is no more treatment left. Knowing I am headed to that reality, too, at some point, makes it all feel very close. We cry together, pray for each other, and try to lift each other up while still respecting that no two people experience this the same way.

Time, identity, and redefining what matters

One big lesson from all of this is about time. Time is your biggest asset. I am very careful with where I give mine now. Texting someone back takes time. Taking a call takes time. If I am giving you my time, it means you matter to me. I tell my friends and support sisters that, and they understand, because they are living it too.

I also realized how easy it is to let cancer become your entire identity. In the beginning, I think I fell into that. You are searching for information and community, and everything in your life becomes about cancer. Recently, I have been trying to pull away from that mindset and remind myself that I was more than cancer before this, and I still am. I am funny, I am creative, I am a mom, a wife, a daughter, a friend. I am not just a patient.

When I am in the hospital three times a week, I allow myself to be “the patient” in that space. But when I go home, I sometimes tell my sister or my friends, “I do not want to talk about cancer today,” and that is okay. I step back from social media if it gets too triggering. I try to read, do something small that feels normal, or just rest.

Ultimately, it is about redefining who I am and what I want the rest of my life to look like, however long that is. That is true for anyone, with or without cancer. If you are not happy with your life, you can ask yourself why and start taking small steps. Things do not change overnight, but small wins matter. I celebrate the small wins.

My final message: forgiveness, kindness, and changing the world

If there is one thing that sums up what cancer has taught me, it is that you have one life to live and time is precious. Spend it on what and who truly matters. Try to be forgiving of yourself. When I look back at my life, I do not see mistakes as just mistakes; I see them as learning. I learned, I grew, I changed. Holding onto self‑blame does not help.

The most beautiful thing you can do is be kind and spread love. That starts with being kind to yourself. Many people are not kind to themselves, and that makes it hard to be kind to others. You do not have to change the whole world with some huge gesture or have millions of dollars. If you work on yourself and try to be a good person, that is how you change the world: one small act at a time.


Arelly R. stomach cancer
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