Parenthood, Persistence, and Rare Cancer: Ali’s Adenoid Cystic Carcinoma Experience
Ali shares her adenoid cystic carcinoma story, a rare head and neck cancer. Her experience includes noticing a small lump under her jaw after childbirth to specialized surgery, radiation therapy, and learning to advocate for care with a rare cancer.
Ali was adjusting to life with a newborn in the Twin Cities, learning the rhythms of early parenthood while her body slowly recovered from pregnancy. Around that time, she noticed a small lump under her jaw. It didn’t hurt, and nothing else felt obviously wrong. Like many new parents, she assumed her body was still recalibrating.
At her six-week postpartum appointment, Ali mentioned the lump. She was reassured it was likely a swollen lymph node, something common for breastfeeding mothers. “Your body’s doing weird things right now, so I’m sure it’s fine,” she was told. Still, the lump didn’t go away. Over time, a quiet instinct stayed with her that something wasn’t quite right.
A year later, her instinct told her something was still not right. As a dental hygienist, Ali knew her anatomy well, finally prompting her provider to check again, leading to referral and a needle biopsy. “I brought it up to my doctor again. She palpated it and referred me to an ENT… They saw that it was not normal. It was cancerous.”
The diagnosis was adenoid cystic carcinoma, a rare head and neck cancer best managed by a specialized team. Ali’s aunt performed her surgery and coordinated care with an expert oncologist. Decision-making wasn’t straightforward: guidelines for this rare cancer are sparse. Surgery was followed by 30 sessions of targeted radiation therapy. The toughest side effects, like painful, sunburned skin and a sore mouth and throat, were often harder than surgery itself.
Ali’s adenoid cystic carcinoma experience forced daily adaptations as a mother. When treatment left her exhausted, her extended family cared for her children, then ages one and three. Her youngest’s separation anxiety and the family’s emotional toll were the price of vigilance and perseverance. Advocacy became a driving theme: “Always listen to your gut, seek a second opinion if needed, and don’t hesitate or feel guilty for asking for another doctor to look into it.”
Inspired to embrace life’s small joys and contribute to rare cancer research, Ali now runs, creates in her home pottery studio, and values each moment of wellness. “Take it one day, one hour at a time… See the good in everything and the magic in small things.” Her adenoid cystic carcinoma experience, shaped by intuition, advocacy, and community, is now a message of resilience for others facing rare diagnoses.
Watch the video of Ali’s interview or read the transcript below to find out more about her story:
Early persistence and trusting personal instincts can lead to critical early detection
Rare cancers require extra self-advocacy and aren’t always recognized by general doctors
Always listen to your gut, seek a second opinion if needed, and don’t hesitate or feel guilty for asking for another doctor to look into it
Transformation included learning not to take life or “shoulds” so seriously, and to prioritize joy, self-expression, and family
Support networks, appointments, and daily routines change for patients and their families. Acknowledge the full impact
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
I live in the Twin Cities area of Minnesota and Wisconsin. I was diagnosed with adenoid cystic carcinoma in 2023. It has been a couple of years. I was in my salivary gland. Right under my jaw is where they found it.
I love traveling. There are so many places on my bucket list. The most recent one coming up is Hawaii, where none of us have been before, so I’m excited for that. Other than that, I love getting together with family. I love doing pottery on the wheel, just using my hands and creating something from basically nothing. I also like photography. I haven’t done it in a while, but I do enjoy it.
First Symptoms That Were Early Red Flags
Really, it was just feeling something there. It was kind of tricky because I noticed it right after having a baby, so it was hard to tell. Was this postpartum stuff? Maybe I lost a little weight in my face, and that’s why I could feel it better. I don’t know. There wasn’t anything blatantly wrong, other than a small lump under my jaw.
I brought it up at my six-week appointment after having the baby. Because I noticed it, it was on my mind. The doctor asked if I had any concerns or anything new. I brought up the lump, and she didn’t pay much mind to it. She didn’t even feel for it. She just said, “Your body’s suggesting you’re breastfeeding. I’m sure it’s just a lymph node. Your body’s doing weird things right now, so I’m sure it’s fine.”
Confirming Something Was Wrong
A year later from that initial appointment, I said, “Yeah, I think something is going on.” Again, there weren’t any other symptoms, but it never went away. As a dental hygienist, that probably helped me notice, “Yeah, this isn’t right.”
I brought it up to my doctor again. She palpated it and referred me to an ENT. At the ENT, the first thing they did was a needle biopsy, which is not pleasant. They took a portion of that tissue, and from there saw that it was not normal — it was cancerous. We scheduled surgery, and that gave them a more detailed look at what exactly it was.
Receiving My Adenoid Cystic Carcinoma Diagnosis
I had heard of adenoid cystic carcinoma; it’s a very rare type of cancer. Years ago, I was in Waco at Magnolia, the silos with Chip and Joanna. They talked about someone who trained them for a marathon, a woman from the Twin Cities, like me, who had this type of cancer. When I was researching after my diagnosis, I found her account. She created a huge organization and raised a lot of money for rare cancer research, which is amazing. It’s so bizarre that I learned about such a rare cancer, and then years later, I ended up with the same type, from the same area.
Finding My Care Team and Evaluating Treatment Options
Through my aunt. She is amazing. I love her. She is extremely intelligent. She was the surgeon who did my surgery. She gave me a couple of options with my location and was concerned about how far I was willing to drive. I ended up picking an area that had a more dense population of cancer patients, rather than somewhere more convenient but less specialized. From there, she worked hand in hand with my oncologist. They are an amazing team, coordinating before each of my appointments, and it has been great so far.
With rare types of cancer, there’s not a lot of research, so they don’t know exactly how to plan treatment. There is a wide range of guidelines. The most typical treatment for this cancer is radiation therapy; it is chemo-resistant, so we didn’t pursue chemotherapy. After surgery, we decided on 30 rounds of radiation — Monday through Friday, with weekends off. Near the holidays, I had to do a couple of days of double doses, which completely zapped my energy. By the end, I was so, so exhausted.
Side Effects of Radiation
Since it was head and neck radiation, it was very targeted. My mouth and throat were very sore. Toward the end, I had to blend up my food because I couldn’t swallow without pain. We had a lot of people bringing us meals, which was very helpful. My voice still gets scratchy if I talk a lot. My skin felt like a sunburn times a hundred, oozing and requiring dressings. The bandages made me feel secure. The worst part was the water from showering — so painful.
Moving my neck wasn’t difficult during radiation, but after 30 doses, the muscles in my neck got really tight. Even after treatment, the radiation kept working for weeks. I saw a physical therapist for stretches and to improve my range of motion, which still isn’t what it once was.
I spent more time in the car than at the hospital. Daily appointments lasted only 15 to 20 minutes. I’d listen to a podcast on the drive to avoid thinking too much, do my session, then return home, continuing my day. Even now, I do the same routine for check-ups.
Surgery Experience and Recovery
For surgery, they took out the tumor and about eight lymph nodes to check for spread. I don’t know how long the surgery lasted, but it was a same-day procedure, and I could go home. I had a drainage tube, which was a first for me, even though I’d had surgeries before. The recovery was more tolerable than the treatment; the treatment was far worse than surgery.
The Hardest Parts: Uncertainty, Anxiety, and Parenting
The hardest part was not knowing what they’d find in surgery or biopsies, if it had spread to lymph nodes, or what the future holds. My mind went to dark places, especially when thinking of my kids and “what ifs.” I knew I could handle pain, but not knowing outcomes was hardest.
Homeschooling came after the fact, but during treatment, my kids were one and three. Grandparents were amazing, and toward the very end, when I was sleeping most of the day, the kids stayed with my in-laws. My one-year-old experienced a lot of separation anxiety. Even after returning home, he would throw himself over baby gates or out of his crib trying to get to me. The whole family was traumatized, even if the kids didn’t understand why.
Self-Advocacy and Second Opinions
The biggest issue is that the first person you go to is your general doctor. You often take your doctor’s word as final. If I had done that, the cancer would have progressed further, and my outcome would have been worse. Always listen to your gut, seek a second opinion if needed, and don’t hesitate or feel guilty for asking for another doctor to look into it.
Giving Back: Advocacy, Awareness, and the Adenoid Cystic Carcinoma Community
Having a rare cancer [like adenoid cystic carcinoma] and connecting back to that person and her organization, Brave Like Gabe, has been powerful. I ran a 5K with their team, have raised money for rare cancer research, and I’ll be running a 10K this spring. We need the research because everyone’s treatment ends up different without clear guidelines.
I’ve found people through Instagram and Brave Like Gabe. It’s helpful to meet others with the same rare cancer. You can share everything with people, but only those who’ve actually gone through it truly understand.
Advice for Cancer Patients and Survivors
I don’t take life as seriously as I once did. Work and other “shoulds” don’t matter the way people think they do. There’s so much you don’t do in life because it seems like you shouldn’t, or “You’re 35, you shouldn’t be doing that.” Before radiation, I never had a tattoo; it felt like a “no-no.” But for radiation alignment, I got tattooed for the process, so afterward I decided to get my first real tattoo — one that says “magical” — as a reminder that life is magical.
Take it one day, one hour at a time. Some days are better than others, even now. The mind is powerful — good or bad. See the good in everything and the magic in small things.
I had two babies and cancer in three years, so I felt lost. It took a year or more after finishing treatment to feel like myself again. It’s crucial to do things for yourself, whatever brings joy, especially after long periods of illness or caring for young children. I set up a pottery studio at home so I can create whenever it works. Doing what makes you happy makes your family happier, too.
Symptoms: Sore on the tongue, which caused pain during eating and speaking; changes in the color and texture of the tissue where the sore was located Treatments: Surgery (partial glossectomy, radical neck dissection, reconstruction), radiation ...
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.
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
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
I was diagnosed 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.
Symptoms: Issues swallowing, swollen gland in the neck
Treatments: Palliative chemotherapy was offered but declined, nutritional changes to support her comfort and energy, meditation and mindfulness practices, self-directed healing methods
Alicia on Motherhood, Advocacy, and Spreading Joy Through Flowers After Her Bile Duct Cancer Diagnosis
In the months after her daughter was born, Alicia tried to push through symptoms that felt inconvenient but familiar, including nausea, fatigue, headaches, and a growing pain in her upper abdomen. Like many new parents, she put herself second. It wasn’t until just before her daughter’s first birthday that Alicia learned she was living with stage 4 cholangiocarcinoma, also known as bile duct cancer, a diagnosis that reshaped how she approached time, family, and purpose.
Interviewed by: Keshia Rice Edited by: Chris Sanchez
Alicia emphasizes how quickly her diagnosis moved from initial emergency room visit to confirmed bile duct cancer, largely thanks to attentive physicians who did not dismiss her symptoms. She describes the emotional weight of being a young parent with a life-threatening disease, noting the compounding anxiety of wanting to protect her child from negative impacts while managing her own health. Amid appointments, chemotherapy infusions, and the adjustment to new routines, Alicia found unexpected gratitude in each day.
Taking an active role in her treatment, Alicia sought multiple second opinions, advocated for Y-90 radioembolization (highly targeted radiation treatment), and joined a tightly knit group of young mothers with cholangiocarcinoma. Her openness to clinical trials and collaboration with leading specialists highlights her practical approach and willingness to explore advances in care. Alicia’s experience extends beyond medical treatment into self-discovery. She speaks candidly about the evolving sense of identity that accompanies visible side effects like hair loss.
Purpose remains central throughout Alicia’s story. She channels energy into her Growing Kindness flower project, giving bouquets to oncology centers, neighbors, and strangers, and shares seed packets during winter. The joy and community she creates are gifts she hopes her daughter will carry forward, living with intention, spreading kindness, and noticing how a single act can create positive ripples. Alicia aims to help empower patients, families, and care partners to seek connection, advocate for themselves, and embrace each day’s value alongside their challenges.
Watch Alicia’s video, and read her edited interview transcript below. You’ll learn more about how:
Self-advocacy is essential. Alicia pursued multiple opinions, researched treatment options, and credits her persistence for receiving life-prolonging therapies
The disease, not the patient, determines treatment response; Alicia highlights the importance of compassionate care and patient effort
Meaning and purpose are possible even after drastic life changes. Her involvement in the Growing Kindness project illustrates transformation and hope
Community matters: Alicia found critical support in a Facebook group for young mothers with cholangiocarcinoma
Living with intent and kindness impacts others, especially children observing their parents’ experiences
Name: Alicia P.
Diagnosis:
Bile Duct Cancer (Cholangiocarcinoma)
Age at Diagnosis:
33
Staging:
Stage 4 (Metastatic)
Mutations:
ARID1A, CDKN2A, CDKN2B
Symptoms:
Nausea
Persistent diarrhea
Extreme upper abdominal pain (right side)
Treatments:
Chemotherapy
Immunotherapy
Radiation therapy: Y-90 radioembolization
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
I was diagnosed with stage 4 bile duct cancer or cholangiocarcinoma in October of 2022, about two weeks shy of my daughter’s first birthday. I have innumerable lung lesions, and I have a grapefruit-sized tumor on my liver.
How I discovered that I have cancer
I had experienced postpartum body changes, which are absolutely normal. However, I noticed an increase in feeling nauseous, headaches, lack of appetite, even though I was nauseous, and I was trying to manage that fatigue and upper abdominal pain in the right upper quadrant. I believed these changes were due to hormonal shifts from being in a postpartum realm or increased stress from my career. I had recently taken a new job, and all those things together led me to believe it was just stress. My right upper quadrant pain increased over a couple of months before diagnosis. One day, my husband finally said, “I think it’s time for you to go to the ER and get checked out. This just doesn’t seem right.” But as most people do, especially parents, we tend to put ourselves last, and I kept pushing off my symptoms, chalking them up to stress and hormones.
One Monday morning, I worked from home until about noon, drove myself to the ER, went in, and was immediately guided into scans by physicians who believed me and didn’t dismiss my symptoms. I am really grateful for that. That’s a story we hear a lot: young, healthy individuals go to the hospital, and their symptoms are just shoved off to the side. They immediately sent me in for scans after palpating my abdominal region, and you could actually see almost a raised area over the liver. Scans led to additional scans in different types of machinery, and I could tell by how quickly things were moving and that I was being shuffled around that there was something gravely wrong. When the physician came into the room, I could tell he was really trying to keep it together.
Before he shared the information with me, he asked, “Do you want to call somebody, have them on the phone? Do you want to wait for someone to be here?” I just said, “Lay it on me. What’s going on?” Unfortunately, they had to tell me they could see three masses on my liver: one the size of a grapefruit, two smaller ones the size of golf balls, and many, many small nodules in my lungs. I drove myself home, calling my husband and my mother frantically to meet me at my house and pick up my daughter from daycare.
I’ll never forget sitting in the backyard at about 5:00, as my husband held me and we just broke down on the ground and cried.
The next few days and weeks were a whirlwind of tests, appointments, and phone calls to insurance, employers, daycare, all of the above.
Very quickly, I was given the news that I had stage 4 cholangiocarcinoma, an extremely rare and extremely aggressive cancer of the bile duct. It is considered a liver cancer, even though it comes from the bile ducts. Mine is intrahepatic, meaning it came from inside the bile duct attached to my liver and metastasized to my lungs as well. It is considered stage 4 when it has shifted to other organs, and I am considered in palliative care. They consider that I will never be cured.
I started chemotherapy within a few weeks and have been receiving chemo infusions for three years as of early October this year.
Parenting with cancer: the emotions and challenges I faced as a new mom
As a parent, I think how you handle things, especially stress, changes with experience over time. It is a learned skill, not something taught, and it takes a very long time. I don’t think you’re ever done being a parent, and I don’t think you’re ever done learning as a parent.
Learning about my diagnosis as a very new mom and new parent was detrimental. The stress, anxiety, and worry were exponential. It’s very hard to put into words. You’re not only worried about yourself anymore; you’re worried about this little human and your family, and the impacts on everyone.
With the aggressive nature of my cancer, everyone immediately goes to “Doctor Google” when diagnosed and starts reading as much as possible. It was very grim out there. Cholangiocarcinoma has historically been considered an older person’s cancer; it is usually diagnosed in people aged 50 or 60. There is a big increase in young patients, which is very scary, and hopefully, with more exposure, it will help increase funding.
Having people shed light on bile duct cancer will help increase funding and start to help younger people diagnosed with it. As a young parent, you’re so terrified of everything out there for your child; the last thing you want to do is add any negative impacts to their life.
How I managed my fears and planned for the future
Given the rarity and aggressive nature of my cancer, I did not think I would still be here today. My mental state when I was diagnosed was very bad as a parent. I immediately thought, “I’m not going to be here in a couple of years. I need to get everything settled, like wills, accounts, estates, and trusts, just to make sure that she’s all set.” Three years down the line, I’m able to tell you that tomorrow is promised to no one, and I am still here and so grateful for that. Every day is a blessing.
I live in a much different capacity, living for today. In the moment, I still have worries, and I still do a lot of planning as a bit of a Type A person. But we find joy in every day and take issues as they come, navigating them together as a family.
I am a much better parent having been diagnosed with cancer: more patient, more kind, and more giving. I honestly think the positive aspects of the way it will change my daughter’s life will outweigh the negative ones someday. Having someone in your life who has cancer, illness, or hardship makes you a kinder individual, and I hope that’s the type of person she becomes.
From my ER visit to my diagnosis
My diagnosis came very quickly. Doctors were amazing in moving swiftly. I live in a very rural area, but close to Boston, Massachusetts, a hub of medical activity. I believe being young alarmed the doctors. Why does this seemingly healthy 32-year-old, who just had a healthy singleton birth, immediately have cancer? Everyone feels for you and wants to move quickly. With the aggressive nature of cancer, they wanted me to start chemotherapy as soon as possible.
From my ER visit to diagnosis, it was about ten days. We saw scans and large masses, so we knew there was cancer, just not exactly which kind or what chemotherapy to use. At first, I thought it was liver cancer, and then it was revealed to be cholangiocarcinoma. All of my blood, liver, and kidney functions were completely within the normal range. If I had only received blood tests in the ER, there would have been no way to tell I actually had cancer, and my symptoms would have been brushed off. The scans, ultrasound and then CT were crucial.
My first symptoms started around June 2022, and I didn’t go to the ER until September.
Learning about an uncommon cancer
As is common for many cancer patients, I went straight to the internet after diagnosis; I’m a Type A person. I did as much research as I could and was up day and night reading about every aspect of the cancer, every possible treatment. I keep a running notes list in my phone of every potential treatment, chemotherapy, or alternative, that I see. There may be a treatment for kidney or pancreatic cancer not yet approved or known for bile duct cancer, but it could benefit me, so I keep those ideas in mind.
I was also reading the negative side, online and on social media, especially Facebook and Instagram, groups of people with bile duct cancer; there’s a lot of doom and gloom. Unfortunately, those diagnosed who are older may not be as healthy and may have other bad habits; they may already be in poor health when diagnosed.
From the outside, I was a perfectly healthy individual, working out, taking vitamins, no other medications, never broken a bone, never had a stitch. Online, all you read is cases where people are gone within weeks, months, or less than a year. The grave statistic: the five-year survival rate for stage four is 2%, which is very low. Most patients have other health issues and are older, but that’s not clear when you’re Googling at two in the morning after a diagnosis. Where I am today is a much different position. I see myself hopefully beating that statistic.
There’s so much fear among Facebook groups, and sometimes misinformation gets shared, but I salute the cholangiocarcinoma group on Facebook. There’s a patients-only group that promotes factual information and less emotional sharing. You’re not reading posts from someone’s distant relative grieving, but sharing direct patient experiences only.
We even created a subgroup shortly after my diagnosis for young mothers with cholangiocarcinoma; mothers with children 18 and under. There are only about 40 of us. That camaraderie has been instrumental in getting me through tough days. Most cholangiocarcinoma patients are stage 3 or 4 at diagnosis, considered palliative or terminal. Being able to share not only the motherhood journey, but also the cancer journey alongside that, has been so helpful. We’re all there for each other.
My day-to-day life with cancer and how I maintain normalcy
For me, three years in, I have a flow for day-to-day life. I am, again, a unicorn. I am on the same line of care treatment as I was at the beginning. I’ve had only one small change, and that is unheard of in most people’s cancer journeys with cholangiocarcinoma. Most cancers, especially this one, mutate quickly, and people run out of options. Everybody I knew in my support groups who was alive before is no longer with us. I am extremely blessed.
Day-to-day normalcy is possible for now. At home, we know my nadir, the periods when chemo side effects are worst, and plan accordingly. I still receive chemo infusions every two weeks, and the same kind. Three years in, I have my routine down for chemo week and the week after. In between, I am again extremely lucky. This is not normal for any cancer, especially cholangiocarcinoma; most treatments fail quickly for others.
I am on an aggressive chemotherapy regimen and have had a dose reduction, now going every other week instead of a 21-day cycle. However, I have physically managed side effects and stayed clinically stable. We utilize daycare for days when I am not well enough to care for my daughter, prepare food in advance, and make sure prescriptions and necessities are ready. Three years into this, I know my body well. Life looks very different. I was very career-oriented and had to retire a year into my diagnosis. Now I spend my days managing symptoms, trying to get things done at home, and being a mom.
I am so lucky for that. I never thought I’d have as much time with my daughter. Cancer affects me in many ways, and I am not lucky to have it, but it has also blessed me, giving me so much time with my daughter, far more than I ever could have had working full-time.
Another part of my life now is continuing my passion for flowers and gardening. My family did this out of necessity for generations, and I grew up gardening. I am part of a project foundation, a nonprofit called Growing with Kindness, growing and giving away flowers. I started doing this before cancer, the pandemic, and motherhood. It has given me the most purpose in my life.
Growing Kindness: how we spread joy through flowers
Gardening and the Growing with Kindness project have given me so much purpose in a time when I felt lost. Being career-oriented was my life’s purpose, aside from being a mom, and I had to find my way back to myself when I stopped working. I did this by growing as much as possible, which helps keep me fit mentally and physically, and it’s a whole family project.
There are times when I can’t get into the garden or cut or weed. My family steps in and helps when I am not well enough. The primary purpose is that I primarily give flowers away, including at my oncology infusion center. They welcomed me with open arms and let me put up a little station by the front desk. Each year, I put up a sign: “Growing Kindness flowers from patient Alicia.” I put out little bouquets, and patients or staff take them home. So, I can spread not just my passion, but joy, and this project has created ripples in my life and community.
We also give flowers at the grocery store, post office, and farmers’ market, and to our neighbors and friends. My four-year-old daughter will say, “I think we should give so-and-so flowers; they’re really sad.” That makes me so proud. If you don’t see joy, spread joy; be the joy. I truly believe these are ways to make an impact in your community; it can be as simple as giving someone a flower.
In winter, we put together seed packets from seeds saved from our garden and hand them out. If someone doesn’t have a green thumb, I tell them to throw the seeds on the side of the road. These seeds are noninvasive, okay for the climate.
Make the world a place you want to live in, and spread beauty. That’s what I do with my days now.
How my life has changed after my diagnosis
Being diagnosed with cancer has changed my life in many ways. I have more patience and more appreciation for slowing down. I am lucky to live in a small, kind community where people care about each other. Everyone’s business is known, and people are always generous. Out in the world, I have more patience. I try to make conversation at the grocery store, hold the door, make time for small connections, making ripples and an impact.
If we don’t make the world a better place ourselves, no one will. If we all look at our phones and never connect, we become robotic, never making connections.
To me, human connection and love are what the human experience is about. So I try to take time to jump into those experiences in real time and really spread joy when I can.
My body image and identity
I have always been extremely confident. Bile duct cancer has changed so much about my life: how I saw my future as a mother, wife, friend, daughter, and community member. It changed my appearance; I lost all my hair. It actually still falls out with every chemo infusion, so I am not completely bald, but I do lose hair. A little bit has grown back, but I don’t really have any eyebrows.
Especially in a society where looks are important, I lean into myself and my confidence. Beauty is in the eye of the beholder, and when you exude confidence and self-love, people gravitate to you and feel your energy. I truly believe in authenticity, being yourself, wearing your heart on your sleeve, and letting your soul shine. People love you for you and not just your appearance.
It is hard to walk around without hair or eyebrows, as a woman, wearing turbans and hats. People can tell you have cancer, and for me, the hardest part was not wanting to be seen as weak and sick. Recently, someone said to my mom at an event, “Is that your daughter? You would never guess she has cancer.” That’s the world I want to live in; cancer is a part of me, but not my whole identity. I am proud to be a cancer fighter, and I am still strong, just in many different ways.
The physical and emotional impact of chemotherapy
As of October this year, at my third anniversary, I have had over 80 chemotherapy infusions of three very strong chemotherapy drugs. I go every two weeks, and we have adjusted treatment, removed immunotherapy, and lowered dosage to help manage side effects. They are still very strong chemo agents.
On chemotherapy day, I am at my infusion from 8:00 AM to about 2:30–3:00 PM. My mom drops me off on her way to work, and my husband picks me up. We pick up my daughter from daycare, go home, and I go straight to bed. Symptoms start during the day, and I have a predictable flow: days one, two, and three are symptomatic.
We have strategies to manage this: anti-nausea medications, drinking tea, staying hydrated to flush out the drugs, and using every available tool. If I feel off, I’m knowledgeable enough now to know when to go to the hospital. I am confident in my body, treatment, and plan, which is a good place to be. The unknown is scary; not knowing what to expect, each chemo would be awful.
We know what symptoms are coming, and prepare for them. My nadir, periods of low immunity, usually come on days seven and eight. Steroids give a false sense of wellness, but after my nadir hits, there’s a low. I prepare by making sure the house is in order, laundry is done, meal plans are made, and arranging for my daughter’s daycare rides. I rely on my family. Sometimes, I’m not well enough for chemotherapy, and that’s a sign my body needs a break — I take a two-week break rather than just skipping a week. These breaks allow me to feel the best I’ve felt in months.
My symptoms include nausea, extreme lethargy, bone aches, and severe neuropathy in my hands, feet, arms, and legs. I have many tools for managing these. I still experience upper right quadrant pain by my liver, which is chalked up to internal neuropathy or permanent nerve damage from liver radiation. My greatest tool is my heating pad; I use it at all times, even in summer, when I sleep, and have portable ones for driving, thanks to my husband. It helps me manage these nerve pain symptoms.
How I’ve advocated for myself
Faced with a scary bile duct cancer diagnosis, I became a huge advocate for myself: asking tough questions, seeking information, and not settling for answers that didn’t sit well with me. I am a strong proponent of getting second, third, and fourth opinions; if insurance approves it, everyone should see a new specialist annually.
Everybody is different, so even if one treatment is standard, you need to question what’s happening. If you’re not involved in your care, you’re not doing yourself any justice. There are never too many opinions. I have met with four cholangiocarcinoma specialists in New England and New York, and all have agreed to keep me on standard care.
The more opinions I can gain, the better. At this point, I don’t question whether I’m on the right treatment or if I need more genetic testing. I have had many eyes on my case. I keep notes on potential treatments for the future.
Advocating for myself helped me receive Y-90 radioembolization, a strong dose of radiation beads delivered through the femoral artery, directly into the tumor. It helped kill the grapefruit-sized tumor on my liver, most of which is now necrotic, though some cells remain. By the grace of God, I have answered three years on one line of chemo, which is extremely rare.
Clinical trials and research: considering new treatments
With aggressive cancers, many patients progress quickly and have only clinical trials as an option. This is vitally important for the cancer community and for the future. There’s always hope that a clinical trial may be the “golden egg,” a cure, especially for palliative patients.
I have not removed clinical trials as an option. Every oncologist I’ve met asks, “Is now the time?” Every single one has said, “Given your stability, stay on your current treatment.” That makes it easier for me, and I’m lucky to be in this position; it’s not every patient’s outcome.
Each time I have a scan, my local oncology team consults with my team in Boston — Dr. Haley Ellis, a Harvard researcher and leading bile duct cancer expert. If it came to needing a clinical trial, I know she could send me anywhere for one. Keeping communication open as a patient keeps you at the forefront of your doctor’s mind. Being young and relatively healthy makes me a good candidate; if a drug arises that would help, I believe I’d be called.
Understanding palliative care
In cancer, you learn many definitions and acronyms: palliative care, terminal illness, hospice. Many people confuse these as interchangeable, but they have very different meanings. Palliative care typically means you are not curable; it’s hard to hear, but doctors must be honest.
Doctors told me, “You will not be cured, but we’ll manage your cancer.” I’m not in hospice or considered terminal today. I’m not actively dying. These are difficult terms, but palliative care only means it can’t be cured; it opens resources and therapies that help manage treatment.
It’s medical coding, setting tone, but it does not mean you’re dying tomorrow.
How I keep going
One thing I often say, and many people do about challenges, “I don’t really have a choice.” Early in my diagnosis, a nurse told me, “You do have a choice. You can get up every day and fight to the best of your abilities or not.” There is a difference.
That realization really stayed with me. The fact that I show up every day through hard days is my way of moving forward. Everyone’s journey is different, and I recommend being gentle with yourself.
Some days, I am the warrior. Other days, I am defeated, emotional, crying, feeling lost. It can change day to day, hour to hour, moment to moment.
Allowing yourself grace and not always being at the top of your game is key to moving forward, physically and emotionally.
What I want others to know
If I could go back and say anything to myself before diagnosis, I would say to stop taking myself so seriously. Life is to be enjoyed. Your career is not everything. Just enjoy living in the moment and take things slowly.
What I want my daughter to take most from this experience as she grows is to live with intent and spread joy and kindness. The waves we make in our village and community by being kind are important. I don’t ever want her to forget that one small action can change the world.
It’s not all doom and gloom with bile duct cancer or cancer as a whole; there are horrible days, but there are wonderful days. I hope she takes the feeling of joy from me and pushes it forward in the kindness she spreads throughout her life.
Finding Peace in Hospice: Alyssa’s Stage 4 Stomach Cancer Experience
If you have ever been to our YouTube channel, chances are you have seen Alyssa and her stomach cancer video on the home page. Millions of people have watched her story. Thousands have left messages of support or started conversations under the video to share their own experiences, ask questions, and talk honestly about cancer. Alyssa isn’t just telling her story. She’s helping create a community of people who could see themselves in her, who maybe felt more empowered and less alone because she was willing to be so open.
Most of the stories we share focus on diagnosis, treatment decisions, and what it looks like to live throughout care. Alyssa has invited us into a different chapter, one that many people are afraid to talk about.
Interviewed by: Taylor Scheib Edited by: Katrina Villareal & Jeff Forslund
Since her original interview, Alyssa has gone through 38 rounds of chemotherapy, three rounds of immunotherapy, a total gastrectomy with part of her esophagus removed, and surgery to remove both ovaries and fallopian tubes. After exhausting all available treatment options and seeing her stage 4 stomach cancer continue to progress, Alyssa made the decision with her care team and family to begin hospice care at home.
In this new video, she talks honestly about what hospice means to her, how she is focusing on comfort, connection, and memories with her family, and why she still feels called to use her voice for others.
From the beginning, Alyssa and her care team were honest that the treatments were not curative, only meant to slow the cancer and buy time. As scans eventually showed further spread, she faced the reality that the treatments were no longer working for her stage 4 stomach cancer. Hospice became a way to prioritize symptom management, reduce pain, and focus on comfort and presence with the people she loves. Even as a young woman, she navigated the strange, often stigmatizing process of calling hospice agencies for herself and not for a grandparent, and she found a program that respected her and took her needs seriously.
In hospice, Alyssa centers self-care, connection, and meaning. She talks openly about planning her funeral arrangements to ease the burden on her family, recording videos and writing cards for her son’s future milestones, and savoring the little things, like skincare, makeup, and feeling the grass under her feet. She describes each new day as a blessing, often reflecting at night on how precious life feels now that time is so limited. Her hospice experience is not just about decline; it’s also about redefining strength as accepting support, asking for honest communication from her care team, and embracing the love that surrounds her.
Alyssa also uses her voice to advocate for more awareness and research in the stomach cancer community. By sharing her symptoms, treatment side effects, and hospice experience, she hopes to encourage earlier diagnoses, better options for future patients, and a culture where people with advanced disease are seen, heard, and honored.
Watch Alyssa’s video or read the transcript of her interview below to get an update on her story:
The importance of honest communication with the care team to help understand treatment options
Why hospice is not “giving up” but choosing comfort, pain relief, and presence with family after exhausting all available treatment options
How small acts of self-care become powerful tools
Why it’s okay to feel scared, sad, or guilty, and to seek support so you do not stay stuck in those feelings for too long
Name: Alyssa B.
Diagnosis:
Stomach (Gastric) Cancer
Staging:
Stage 4
Symptoms:
Fatigue
Elevated resting heart rate
Heartburn
Difficulty swallowing
Weight loss
Treatment:
Chemotherapy
Immunotherapy
Surgeries: total gastrectomy; partial esophagus removal; bilateral oophorectomy and fallopian tube removal
Clinical trial
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
My name is Alyssa. I was diagnosed with stage 4 stomach cancer in May 2023. Since being diagnosed, I have gone through 38 rounds of chemo and three rounds of immunotherapy. I have had my entire stomach, part of my esophagus, and both my ovaries and fallopian tubes removed. I have done a clinical trial.
I have also lost my ability to eat or drink anything. I have a complete blockage due to the cancer, so I was on total parenteral nutrition (TPN) for three months and then transitioned to a feeding tube, which I have had since March 2025 and is how I receive all my nutrition and hydration.
I have exhausted all lines of treatment that are available to me and with the cancer continuing to progress, we have decided to start hospice. I am now in at-home hospice care, which brings me to today.
How I Transitioned to Hospice Care
From the beginning, we knew that there weren’t any curative treatment options available and at a certain point, we would switch to hospice care. We just didn’t know how long we had. We knew how many lines of treatment we had available. My care team and I had the conversation that once we exhausted these options, hospice would be something to consider.
As we got closer and I transitioned to the final line of treatment, we asked, “What does this line of treatment look like? How long do we expect this to slow down the cancer?” Of course, we didn’t know exactly, but we wanted an estimate. Then we asked, “Once we realize that the cancer is continuing to progress, will we be switching to hospice?” They said yes, if that is what I want.
With hospice, the goal is to manage symptoms and make me as comfortable as possible as I prepare for my final transition. For me, that was a no-brainer. I want to be comfortable; there are no other options available.
I had some extreme pain in my abdomen that I had never experienced before. It was so severe that I went to the emergency room. When I was there, they did their workup, blood work, and scans. The scans came back showing that the cancer had continued to progress to other organs. We concluded that the chemo I was on was not working. Then we had to make the decision: What do we want to do next?
We weren’t going to continue with treatment that wasn’t working and since there were no other options available, I could just continue with life and let things happen naturally. Or I could utilize this great resource of hospice, where they focus on making me comfortable. They explained what that looks like. I definitely want to be comfortable. I’m in a lot of pain, so I’m ready for that.
They shared some hospice facilities that I could utilize. I was told to interview them, which was overwhelming because I thought, “How do you even begin to interview? I had no idea what I needed, what I wanted, or what I would need in the future.” The good thing is that my cancer center sent me a resource with some questions that might be important to me.
I called different companies, asked questions, and then chose the company that I felt best met my needs. That process was a little weird because I am so young. Calling these companies, I would tell them I wanted to set up hospice care for myself and explain where I am at. A lot of them would say, “Okay, so for your grandma, we are going to do this,” and I kept saying, “No, this is for me.” It brought me back to the realization that, yes, I know I sound very young, but unfortunately, this is where we are. It’s a weird process, but I feel at peace with it, knowing that it will make me as comfortable as possible.
Because I have had these conversations with my family, it has helped them be more comfortable and prepared them along the way. I would say, “Once we get to this point, it is hospice,” and now that we’re here, of course, it still feels heavy. It feels like this is the final chapter and that we’re down to the last days or weeks, if we’re lucky. It definitely feels heavy, but I’m grateful for my care team, my family, and my friends. Without all that support, I don’t think I would be handling it as well.
Why Open Communication with My Care Team Matters
Keeping the line of communication open is very important to me because I need to know that my care team is being transparent with me. I need to know that they are aware of what I want and what’s important to me, and that we are constantly on the same page. Things may change; I may start to feel differently, or things may change with my health, and we may need to discuss that. So open communication is very important.
I go into appointments with questions and they know I am going to circle back on what is important to me. They are often prepared and will say, “I went ahead and did this beforehand because I know you’re going to ask about this.” That makes me feel better as a patient, knowing that I’m not just a patient to them and that they care about me and what matters to me.
Coping with My Final Line of Treatment
Being on the last line of treatment available, I knew this was the final shot. This was the last thing we had to slow this down and buy me more time, which is heavy. I know that once you switch to hospice, that turn is very quick — from being up, moving, and talking to not talking, being in bed, and not being able to communicate with my loved ones. That makes me sad because I carry a lot of guilt with that.
I focused on self-care, self-love, and self-soothing during my last line of treatment. On chemo weeks, if I went in on Wednesday, starting Monday, I did all the things to help my mind prepare for the next round. Each round was so intense. It was painful and emotionally draining. I would choose some of my favorite foods. I’m not able to eat, but I would chew them and spit them out to get the flavor. I knew my taste buds would change once I was on chemo, so I wanted to get that in beforehand.
I made sure not to take on too many tasks or stress about cleaning and all the things that needed to be done. Those would be pushed to next week because chemo week is so intense. I know what I’m facing and I want to be in the best frame of mind that I can be. I focused on skincare, meditating, journaling, and lots of grounding. I love to stop on the way to get the mail and put my feet in the grass, put my arms up, feel the breeze, listen to the sounds of nature, and connect with what’s going on in the world.
Being present in those moments helped soothe my soul and ground me because there is so much out of our control. If I can do these little things here and there, it helps me feel better about the situation.
My Mindset Now That I’m in Hospice
It’s heavy being in hospice because I know we’re no longer doing anything to slow this down. There’s nothing available. I know my days are numbered even more than ever before and I feel like there is so much I want to do to help my family and friends. I want to leave videos and letters behind. I want to write cards for my son.
I’m going to be missing out on a lot of things, so I have cards for his 18th birthday and his high school graduation. I have so many things to fill out and write, but I don’t know how much time I have, so it’s a lot. It’s heavy, but I try not to allow that to stress me out too much because I don’t want to stress so much that I miss the moments. I am down to my final moments. I want to create memories with my family and enjoy every moment that I have.
Every day that I wake up, I think, “I saw another day. This is amazing. What am I going to do today? Who am I going to spend time with?” I have been very blessed. I have had a visitor every single day since I started hospice, whether that’s a friend, coworker, or classmate. People from different parts of my life have been visiting me every day. I feel covered in love and I am enjoying those moments.
It’s a lot, balancing what I want to do and not knowing how much time I have. I know it’s going to be a quick turn once I’m no longer able to do these things. Day to day, I try to take it one moment at a time. Nighttime is heavy because I reflect and think, “I just got another day,” and every night it hits me that life is precious. You feel the weight of that when going through something like this.
Creating Special Memories with My Son in Japan
From the time my son turned seven, he told me that he no longer wanted birthday parties and just wanted to travel places with me. At that time, I was a single mom, and I thought, “What do you mean no more birthday parties? You’re only seven.” I thought it was so sweet that he wanted that, so that year, we went on a little trip.
That was also the year I met my spouse and our dynamic changed. Now we were a family doing family trips, but we didn’t get to do a lot because life was crazy. It was one thing after another, and we wanted to save money and were struggling financially. We didn’t travel much, but we had a few trips. Traveling was always important to me and something I didn’t get to achieve.
When I was faced with cancer, it felt like it wasn’t going to happen. Then someone reached out to me and said he wanted to gift me something. He asked me to rank 10 places from where I would most want to go to least. He asked who I would want to meet and what was on my bucket list.
We met up and he surprised me with a trip for my son and me to go to Japan for a week. That meant everything to me, to have the opportunity to go out, live life, and step away from everything that was going on. We had been living with this diagnosis for so long. Even though we tried to enjoy our time together, there was no escaping it; it was always there. In that moment, I got to escape. I was able to go to another country, something I thought I would never get to do, and I did that with my son.
We got to see the beauty of Japan. It was so peaceful. We rode a helicopter over Tokyo and had so many great experiences. I had been struggling with bone pain and fatigue with everything going on, but while I was there, I didn’t experience any of that. I was pain-free. I was so happy. We embraced the trip and each other and made beautiful memories. I didn’t think about cancer or how much time I had left. I got to live and be in the moment with my son, which is something we will cherish forever.
What I Hope People Remember About Me
There are so many moments. There are big moments in my life that are important to me: my son being born, getting married, and our recent vow renewal. But as far as what I hope others remember, something that has been important to me throughout my life is leaving a positive impact on others, in whatever way that may be.
Whether it’s inspiring people to go after their dreams or encouraging them to advocate for themselves, I wanted to be someone who left some type of positive impact, even in the smallest ways. I hope that when people think of me, they remember that.
How Online Support and Kind Words Have Helped Me Keep Going
I cannot express enough how much kind words have meant to me. They have lifted me during some of my deepest struggles. I try to stay positive every day, but oftentimes, I feel weak and tired. There were times when I was scared and felt like my body was failing and there was nothing I could do.
Then I had people reminding me: You are strong. You are doing this. Even though you are struggling, you are still in it and that makes you strong. They would say that coming out and sharing this with the world makes me strong. Some people reminded me that making a video takes energy. I had to pause and think about that because it does take energy. I have to prepare and afterwards, I’m exhausted.
For me, it felt like something I was called to do, so I didn’t think about the energy cost. Having people remind me and lift me, telling me that I am strong and inspiring, helped me to continue to be strong, to fight, and to stay positive. That was important.
It’s okay not to be okay and to struggle. But I never wanted to allow myself to stay in that struggle too long because I knew that would be additional stress on my body, which weakens the immune system. My goal was to try to be as strong as I could be because that could buy me more time.
I’m incredibly grateful for all the support and love I have received over these years.
What I Have Learned About People and the World
I have learned that there are so many amazing people in the world who are very selfless. The way they have given their time, energy, and resources, and taken moments to share kind words with me, is something they didn’t have to do. There are so many people willing to do that simply because they care.
My vow renewal was especially eye-opening because it was completely gifted to us. Over 20 vendors gifted their time and resources. We had food, a DJ, photographers, and so many amazing people who made it a dream come true. None of them had to do that, but they chose to make that day special for my spouse and me. That restored my faith in humanity and showed me how selfless people can be. These businesses need money to operate, but for them to give like that to a complete stranger warmed my heart.
Tomorrow is not promised. We never know when our time is going to be up, so it’s important to prioritize what’s important to you.
Family has always been a priority. I always wanted to take trips with my family, but I kept saying I wanted more savings built up or to pay down debt first. I feel like I lost out on a lot of time when I could have made many more memories. I don’t want to say I regret it, but it is eye-opening.
Book the trip. Do what you want. Don’t wait until some “perfect” time. Things can be figured out. Prioritize what’s important to you. If it’s important to make these memories, you will find a way. Don’t miss out because you think you need a little more saved. Go after it. You will be grateful you made those memories.
Why I Started Sharing My Story Online
I was diagnosed after two years of going to the doctor and not having answers. During those two years, I was trying to research what was going on and what it could be, but I wasn’t finding anything. After being diagnosed, I wanted to know what to expect next, but I still wasn’t getting many answers. It’s a complex question, but even with research, I couldn’t find much information about stomach cancer or the treatments.
I felt called to share my symptoms because I thought, “This is an unfortunate situation, but how many other people are having these vague symptoms and not getting answers? Maybe by sharing my symptoms, I could encourage someone to push a little harder, ask for a second opinion, or ask for additional testing. Even if it doesn’t lead to a cancer diagnosis and they find out it is something completely different, if I can help one person, it will make this all worth it. As much as it sucks, I do not want this to happen to anyone else.” That was my “why” in the beginning. I wanted to help anyone I could.
After my videos took off, I started updating people about what it looked like going through chemo and what happens when the unexpected happens, like when my liver enzymes spiked. What do you do when that happens? I don’t know everything, but by sharing what I experienced, I share what I have learned in my particular case, which could help others.
I kept feeling called to keep sharing, piece by piece. I received great feedback from people thanking me and telling me how it impacted them, along with people asking additional questions and wanting to know more. That is why I continued.
Looking back, I never thought it would become this, but I’m grateful that I have been able to reach so many people and hopefully help many throughout all of this. I cannot change my situation or circumstances, but if I can help one person, that will make this all worth it.
A Message to the Stomach Cancer Community
I would tell the stomach cancer community that we are the future. Stomach cancer is so underfunded, which is why we cannot get the necessary research. It’s insane that there aren’t more treatment options. It’s crazy that some stomach cancers cannot be seen on imaging. Many people have never heard that before.
If we cannot observe this through imaging, why haven’t we come up with a better way to follow this? Without that, how do we know how bad things are getting and how fast they’re progressing? For the stomach cancer community, the more we speak up and share, the more we can fight for a better future, not only for ourselves but for anyone else who may be impacted.
We can use our voices to push for more research and more funding. A lot of people don’t know this information, but when we share it, it might land on the right person who says, “I want to invest in this. I want to look into this further.” We hold so much power that we do not realize we have. It shows in how many people I have been able to reach and help simply by posting and sharing. There is power in numbers. If we all continue, we can hopefully see a better future for those impacted by stomach cancer.
What My Days in Hospice Look Like
As of now, I still have quite a bit of independence compared to others who may have entered hospice. I’m very lucky that my mind is still alert and that I can express what I want.
I have a nurse and an aide who both come weekly. The aide helps with bathing and things like that, while the nurse stays on top of my medications and asks how I’m feeling. As things continue to progress, those visits will increase in frequency.
My son is with me every day. He is homeschooled and we made that decision so we could have more time together, which has been great. My spouse is here, too, but he works long hours five days a week, so we try to make the most of the time we get together.
I have a visitor every single day. At least one family member, friend, coworker, or classmate comes to spend time with me. I see different people every day and I enjoy reconnecting with them. We take pictures and create more memories.
A lot of what I do depends on my pain. I’m in a lot of pain. I’m in pain 24/7 now. I cannot remember the last time I was without pain. It’s at a tolerable level most of the time. It spikes at times, but I have medications to help. Regardless, I’m constantly in pain and have to plan my days around it because I never know how I will feel. I might start the day feeling great and then suddenly feel horrible and be unable to do anything else for the rest of the day.
Recently, I have been trying to keep the house tidy and slowly set up my Christmas décor because I love Christmas. My son and I set up the Christmas tree. I did most of it, but didn’t put the star on top, and then needed a break. I make sure to take breaks. Family and friends offer to get me out of the house to do things I want to do. If I need a few things from the store, my mom offers to pick me up and take me, even if it’s a long drive, because she wants to support me.
I’m not doing a lot of moving around, but I’m enjoying the time and memories I’m making with my friends and family.
How Makeup, Self-Care, and Community Help Me Feel Like Myself
I still do my makeup. I love makeup and feel like it is a form of self-care, just like skincare. If I’m able to do it, I like to. Recently, I have been getting on TikTok Live and doing my makeup while chatting with my friends and supporters.
As I get ready, everyone joins and says things like, “We love you! How are you feeling?” It’s so nice to have all of that while I’m also pouring love into myself by doing my makeup. They ask me about the products, so I feel like I’m in my influencer era. I always wanted to be a makeup artist, so I feel like a little makeup artist, even if I am not officially one.
Being able to do anything for yourself — taking a shower, doing skincare, doing your makeup, fixing your hair — makes a huge difference. Kind words from others can make someone’s day. If you see someone and tell them that you love their hair, they might have been having a horrible day, but now you’ve made them feel better because you took the time to say something you didn’t have to say.
Living with Guilt and Trying to Ease My Family’s Burden
I have come to terms with the fact that guilt is something I will always carry, but I also know deep down that I did not cause this. I know it’s not in my control. I still carry guilt because it’s happening to me and I see my family watching me and hurting because it is happening to me. I feel like I’m putting them through it, even though I know that I’m not. I try to remind myself that it’s not in my control. There’s nothing I did to cause this and there’s nothing I can do to undo it. I try to do little things to make myself feel better.
One thing I’m doing now is planning my funeral arrangements. If I can take that off their plate, I feel like that is the greatest gift I can give them right now. When the time comes, it will be heavy. If they can focus on grieving and being there for each other instead of answering a million questions about what I would have wanted, I think that would be amazing. I try to do things like that to bring them peace and comfort. It doesn’t erase my guilt, but it makes me feel a little better. Anything I can leave behind for them — videos, letters, or anything to make this easier — helps ease that feeling a bit.
How My Faith Shapes the Way I Think About Death
A lot of my perspective comes from my faith. I have known from a very early age that the only thing we are promised in this life is death. This was always going to happen; I just didn’t know when or how. I still don’t know exactly how it will happen because anything can happen in the next few days.
Death is a very normal thing and something that will happen to all of us. It’s heavy, but if I can talk to my family about how I feel about it, it helps. I’m at peace because, as much as this will hurt and be heavy for them, I also believe I will be in a better place. I know it sounds cliché, but I truly believe I will be without pain. I will have beaten cancer. I will be done with it. My family will no longer have to watch me suffer. Those are things I look forward to.
I don’t know what the next life looks like, but I believe it will be more beautiful than I can imagine and that I will be at peace. By sharing that with my family, I feel I have brought them peace and comfort. Sharing this with others who have family members going through something similar or who are in hospice for whatever reason might help them consider that their loved one might feel similarly. We often struggle with hurting for the person going through this transition, but a lot of it, for me, is faith and acknowledging that, as much as it sucks and as heavy as it is, there is still beauty within it.
Why Having Platforms and a Voice Matters to Me
I’m very grateful that I have a voice and that I’m able to share this. I have thought about how meaningful it is that I was able to be on this platform and share my symptoms. Then, share a follow-up after we did the trial that we hoped would find a cure, but it did not. And now share about transitioning into hospice and preparing for my final transition.
I’m grateful that I still have the opportunity to be here and share this because that’s not always the case. My initial prognosis was 2 to 11 months, which is not a lot of time, but here we are, 2 ½ years later. I am grateful for that extra time and the opportunity to share what I have been going through.
Sharing is how I show my gratitude. I did not live quietly. I decided I was going to do something meaningful with my time and try to help others. Now, as I get close to my final transition, people ask if I am scared; I’m not. Being able to share what I am feeling is amazing and I hope it continues to help others.
I’m grateful for all the platforms, including The Patient Story, for giving me the opportunity and the space to share this. We touched on so much — living life to the fullest, advocating for yourself, and how precious life is. Those are the main messages I wanted to get across. I cannot think of anything else to add.
Alyssa’s First Video
Alyssa’s story starts in 2023. Learn more about her symptoms, diagnosis, and treatments as she learned she had stage 4 stomach cancer.
Symptoms: Issues swallowing, swollen gland in the neck
Treatments: Palliative chemotherapy was offered but declined, nutritional changes to support her comfort and energy, meditation and mindfulness practices, self-directed healing methods
Finding Light Through Advocacy in Stage 3 Synovial Sarcoma: Sorcha’s Experience
Before cancer entered her world, Sorcha’s life in El Paso, Texas, was full of family, engineering work, and hands-on creativity. She spent her days as a mechanical engineer in the oil and gas industry and her evenings quilting, crocheting, or making friendship bracelets with her young daughter. Their bond showed up in bright, memorable moments, like planning a Taylor Swift concert trip together and crafting bracelets in anticipation. It was within this full and grounded life that Sorcha first began navigating what would become a diagnosis of stage 3 synovial sarcoma.
Before her stage 3 synovial sarcoma diagnosis, Sorcha’s days were defined by work, parenting her daughter and son, and finding joy in movement and learning. She went to New Orleans for a Taylor Swift concert, which she remembers as a safe, joy-filled space, especially for girls, women, and families. She, her daughter, and her sister immersed themselves in the music, traded hundreds of handmade bracelets, and created memories that would later stand out as a “protected, beautiful time” just before everything changed.
Soon after, Sorcha began noticing symptoms: right-sided abdominal pain, changes in her breast, and a frightening episode of vision loss in her right eye. Despite seeing multiple doctors and being told the symptoms were likely stress or migraine-related, she continued to push for answers. Her stage 3 synovial sarcoma experience quickly became one of self‑advocacy as she tracked patterns, returned to primary care, and insisted that seemingly “unrelated” symptoms might, in fact, be connected. Eventually, severe pain, nausea, and vomiting led her to the emergency room, where a chest CT revealed a large mass.
From there, Sorcha moved into an intense treatment path that included chemotherapy and protective medications to shield her kidneys and bladder. She describes the shock of sudden hair loss, shaving her head with her kids at a local salon, and the mounting fatigue and cognitive effects that linger even now. Yet she also highlights support from friends who flew in before surgery, an employer who offered housing during treatment, and a tight “village” of long‑time friends who celebrated “No Mo’ Chemo” with a beach photo shoot. Through it all, her stage 3 synovial sarcoma experience is defined not just by medicine, but by motherhood, community, and a fierce commitment to self‑advocacy.
Watch Sorcha’s video or read her interview transcript to find out more about her story:
Strong self‑advocacy helped Sorcha push past initial “it’s probably stress” responses and eventually get imaging that revealed her synovial sarcoma
How small, joy‑filled experiences became powerful emotional anchors once symptoms and treatment began
Maintaining a “village” of long‑time friends across multiple moves created a support system that showed up in tangible ways
Learning that patients often need to trust their own sense that “something is wrong” and keep asking questions until their concerns are fully addressed
How Sorcha’s perspective shifted from simply enduring treatment to intentionally using her time and health to be present with her children and to share her experience to help others
Name: Sorcha B.
Age at Diagnosis:
36
Diagnosis:
Synovial Sarcoma
Staging:
Stage 3
Symptoms:
Right upper quadrant pain
Changes in the right breast
Temporary vision loss in the right eye
Nausea
Vomiting
Treatments:
Chemotherapy
Cytoprotective therapy: mesna
Surgery: lobectomy of the middle lobe of the right lung and associated ribs and soft tissue
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 Sorcha. I was diagnosed with stage 3 synovial sarcoma at the beginning of 2025, and I live in Texas, in El Paso.
I am a mechanical engineer by degree, and I work in oil and gas. I have worked at the same company my whole career. I’m passionate about learning. I’m curious about the world and the people around me. I think the stereotype of mechanical engineers is that they do stuff with cars. I don’t do anything with cars. I like to make stuff with my hands, though, so I enjoy crafting, arts and crafts. I quilt, crochet, knit, and make friendship bracelets. I’m a big Taylor Swift fan and so is my daughter. I am married with two kids. I have a daughter who is six and a son who is four. I also like to read and lift weights.
Taylor Swift Trip to New Orleans
That trip was on Halloween weekend, which, if you’ve ever been to New Orleans around that time of year, it’s like festival season but spooky. There are a lot of locals, music, and artistic expression. It’s such a cool city for a ton of reasons, but also very cool to be there the week of Halloween, and the concert was that weekend. I went with my daughter and we got the tickets a year beforehand, so we had made our costumes. It took about a year for me to make my costume. It was very intricate, and my daughter went from knowing the songs to knowing all the lyrics to all the songs because she’s developing and growing up, so it was so cool. It was a fun mother-daughter time.
We handmade hundreds of bracelets together, and then we got to hand them out and trade them with people in New Orleans. We have a little memory box with all of our bracelets. She has a whole bunch in her room, but those are the ones that I have little memories about.
My sister came down. It was a cool experience. That whole concert vibe is very girlhood. It’s safe. Everyone’s so positive and kind, and it was a great experience for my daughter. It was a whole bunch of moms and sisters and kids and women of all ages, also some men, too, but just a very safe place for her to experience the city for the first time. It was a beautiful experience.
I went to the emergency room for the first time a little less than a month later, so it stands out for me as this gem of this protected, beautiful time before I became ill.
Girls’ Beach Trip and No Mo’ Chemo
As part of my career that I’ve chosen, I’ve moved a lot. I’ve probably moved, I want to say, seven times. It becomes important not to rely on an external village. You need to make your village. I think part of that is making sure you maintain strong, connected, intimate friendships even as you move. That takes work and effort, and it has to be reciprocated.
This group of girls, not all of them are there in that picture, but that group represents that village of adult friends I’ve had now for, I mean, a couple of the girls since I was two or three, and I think the newest friend I have is maybe 12 years ago. They’ve been extremely supportive through this whole experience. We wanted to celebrate the end of chemo, so we did a “No Mo’ Chemo” photo shoot and had my family come in right after. We actually had a photographer take pictures and memorialize that experience of being done with being sick and turning the page towards surgery and recovery.
Wigs and Hair Choices
Everyone thought I would wear wigs, I think, so it was a little bit like, hey, wigs are cool, wigs are in. But I never did. No shade or hate to anybody; I just found them a little bit itchy. So it was kind of fun to wear them for the first time and then be neon, you know.
Early Sarcoma Symptoms and Dismissed Concerns
I would say in the summertime, maybe July, I had some right-quadrant pain. It was dull, aching pain over the course of a few days, with some sharp stabbing pains. It lasted for a couple of days and I thought, “That’s kind of weird. Maybe I hurt myself. Maybe something happened.”
A few weeks later, I had the pain again, except it was bad enough that I couldn’t sleep. It affected my sleep, and the sharp pains were really sharp. I was on Google asking what it could possibly be and came up with it’s probably gallstones. I had lost weight. I’d finished nursing my kids and was coming back to my normal weight, so maybe that’s what it was. That was around July, and then I had the pain again.
Along with that, I had had a couple of other symptoms and I thought they were unrelated. I thought I felt something in my right breast. Something seemed different. Something seemed off. I went and saw a gynecologist to check me. He said he didn’t feel anything. Everything felt normal. I was like, “Well, one of these feels different. My right one feels like something’s off with it. I can’t really explain why; it feels higher or something.”
Around then, within those weeks, I lost vision in my right eye while I was getting ready for work. It was as if you stared into a light and you can’t see for a while, except it didn’t recover and my eye looked normal. My pupils were equal and reactive. I saw several doctors. I saw the gynecologist, an optometrist, and an ophthalmologist about my eye. They said I was probably having a migraine. I didn’t have a headache, but they said an aura around a migraine can result in that vision loss. After seeing a few doctors with all these unconnected things, it came down to I was probably stressed out.
Primary Care, Tests, and ER Referral
Then I had the pain again in August, and I went to a primary care doctor and said, “Hey, look, I’m having A, B, C, X, Y, Z. I know I’ve been told by other doctors that [they] are unrelated. I think they’re related. I think there’s something wrong.” She took me very seriously. She ordered a whole bunch of tests. She ordered a head CT. She ordered an ultrasound of my gallbladder area, just checking on that. I also saw a gastroenterologist.
All my tests came back normal. All my blood work was normal. My head CT looked normal. Although my doctor was very supportive and said, “I agree, if you say there’s something wrong, there’s something wrong, maybe it’s something hormonal. Let’s meet back again in six months and see if anything has changed. But in the interim, if you experience this pain again, immediately go to the emergency room because they may be able to image and see if there’s some intermittent thing happening. They may be able to see it while it’s happening.”
Emergency Room Visit and Mass Discovery
That was in August. September, October: Taylor Swift concert. Towards the end of November was the next time I had the pain. I had discomfort, pain, and nausea at work after eating a meal, which again sounded consistent with gallstones. I went to see our LPN, and whenever he was probing around to see if everything was okay, I started vomiting and I couldn’t stop. Concerned that this might be something cardiac or more complex or serious, I went to the emergency room. At the emergency room, I was triaged and waited several hours to be seen.
Once I was seen, again, scans were showing nothing. I said, “Hey, I really think something’s wrong over here. Can you please look over here, see if you see anything?” They went back and consulted and said, “Okay, we might see something. If you’re saying you’re having pain there, we see a little, it might be a blood clot. We can’t really tell. We’ll do a chest CT.”
Once the chest CT was done, everyone’s mood changed. I wasn’t given the results immediately. I have an idea of how long the results should take. They said, “We’re going to wait. We’re going to put you in a room.” I had just been behind a curtain before then, so I thought a room opened up. They put me in the room. I think they were trying to be very considerate of my feelings and my experience, but they put me in the room privately so that they could tell me that they found a large mass and it didn’t look good.
Timeline to Official Diagnosis
I had an emergency room visit where they found the mass, and then we drained the fluid, re-inflated my lung, biopsied the mass, and then they tested the biopsied tissue. I was diagnosed on January 2nd. My ER visit was around Thanksgiving, and my diagnosis was in New Year’s.
Hearing the Diagnosis and Treatment Plan
What’s crazy is I knew what it possibly could be, and I had self-referred to the sarcoma group at MD Anderson before even having the FISH result that confirms sarcoma. So I knew that this was a significant chance, but I hadn’t done any research into what the treatment protocol would be because it’s so different based on your individual case. It basically went, “Hey, yes, we have this result, you have synovial sarcoma, you have this high-grade malignant mass that makes you stage 3, we need to start chemo immediately, it’s going to be really bad, you’re going to get really sick, and you’re going to be rendered infertile. So, are you done having kids?”
In their defense, they’re not saying this stuff boom, boom, boom, but the experience of it is like, “Oh, that’s a lot of information,” trying to take it in. She said, “If you want to have more kids, we need to freeze these eggs now, and we need to get you in here next week to start chemo. You’re going to be out of work for six months, and then you’re going to have surgery, and it’s going to be this significant surgery.”
I was clinical in my response. I was like, “Yep, I’m done having kids, that’s perfect. I’m young, I can handle difficult chemo, but I’m old enough that I already have my children. Okay, perfect. We live close to MD Anderson.” I was responding in a very unemotional way, but I think that I just wasn’t able to experience the emotions in the moment.
Telling My Husband, Parents, and Friends
My husband was with me in the room the first time. At first, we were amongst ourselves, like, “It has to be benign, it has to be benign. I’ve never smoked. I work out. I eat healthy. I’m a healthy person. Of course, I don’t have cancer.”
When I found out that they had ruled out a benign mass, I came in and woke him up and told him it was cancer. I think we were both surprised, asking the same questions over and over again, like, “Well, why? You don’t do any of this stuff that makes a risk factor.” But that was his biggest shift, realizing that it was cancer.
The actual diagnosis of the sarcoma and the treatment protocols were more intense than I expected, but we didn’t know that much about what cancer patients go through. Most of my friends who had had cancer had had skin or breast cancer that was mild enough not to affect their life or their appearance significantly during the treatment, just because of the type of cancer they had.
I called my boss on the way home and said, “Hey, I have to be out of work for six months. I need to leave immediately.” He said yes and even offered his home to me. They had an apartment that his wife and daughter were using while she was in her last year of high school, and they offered to let me stay there while I was going through treatment. That was generous and helped support me a lot.
Then I called my dad. He was distracted and packing and said, “Hey, can you call your mom? I’ve got to get this done.” I said, “No, it’s serious. Can you sit down for a second?” I told him, and I asked him to call my mom first so that she could have a reaction to it and not feel like she had to not react to protect me or something.
My dad’s an engineer. My mom’s more like a biologist-artist type. That just felt like the right way to do it. Then, everybody else, I sent a text message that said, “Hey, I have cancer, and here’s this three-paragraph-long thing of all your questions answered. I pre-wrote it with everything and put it in my notes.” Everyone got the same message. This is what I’m comfortable with you sharing with others and this is what I’d like you to wait to share. So I guess being my friend is kind of a wild ride. You might get that text one day, I don’t know.
Researching Care Teams and Protocols
I reached out to a few places. One place in the Northeast, I’m blanking on what it’s called, and I self-referred to Mayo Clinic and MD Anderson. I called a few people I knew and trusted. I reached out to my family and said, “Who do you know that works in oncology? Who do you know that knows about clinical trials or knows about this type of cancer that I believe I have?”
I wanted to understand who is most respected. I did a lot of research going into it before I had that January 2nd meeting, not so much about what protocol they would prescribe, but which care teams are respected and have the most options and the most robust systems for support.
The care team came in and said, “This is what it is. In general, sarcoma is resistant to chemo; you’re going to have to have an intense chemo regimen. Our goal is to prevent or reduce the chance of recurrence.” They were transparent that this is not going to solve my cancer. This is going to make it less likely to recur. It probably will come back, but this is going to hopefully make that further away or less likely.
They were direct with me and clear about the chances and the intent behind each portion of the protocol and the surgery. They recommended that I reach out to other people. They said, “Here are your scans. Here’s your information. You can send it to these people or whoever you choose and see what they recommend.”
I had also seen a local oncology team in El Paso, and they said, “Full disclosure: we see certain types of cancer, and this is a really rare one. This is really aggressive. You need to go to the best in the country, and we’re not them. But here are different people to talk to.”
Everybody recommended pretty much the same protocol. All of what the best people in the industry recommended was consistent, so I didn’t have concerns around that. I felt like all my questions were answered. When it came to deciding whether or not to do portions of treatment, I decided to do every step that would increase my chance of success and decrease recurrence, and I had the benefit of having no risk factors that would preclude me from doing those things.
Chemo Before Surgery
I got my PICC line put in on January 13th, which was great, and started chemo around January 15th. I was on a pretty heavy dose. I think it’s called doxorubicin; it’s called Red Devil as a slang term. I had that on Mondays. Then I had four days of what’s called AIM treatment, basically a chemo that’s formulated for your size, spread out over however many days they need to give you your dose.
Then I had a Mesna bag, which is a continuously pumping bag that provides protection for my kidneys and bladder. The Red Devil is cardiotoxic and can be, I guess, brain toxic, so there’s medicine for that, and then I had the bag the rest of the time to continually flush my kidneys and bladder to help protect those. That would be a week of that, a week of feeling like crap, having all my levels go down — my red blood cells, white blood cells, and platelets — and then a week of trying to get back up into a range where I would qualify for chemo again.
It was that three-week cycle. I think I had six of those for 18 weeks. It ended up taking around 20 weeks because I wasn’t always able to qualify back towards the end of my treatment.
Hair Loss and Shaving My Head
It was crazy how fast my hair fell out. I thought weeks in, I was going to start having hair fall out, and it was not like that. I think it’s that Red Devil; I think that’s what most people experience. It came out in clumps. I had long, thick hair, so I’m used to being able to play with my hair, pull on it, braid it, and it keeps on ticking. But I would run my hands through my hair and hair would be falling out everywhere, even my body hair falling out, which was weird.
When I was having all the clumps fall out, I was getting big bald spots and my part was super wide. There were big sections with no hair. I’d already cut my hair short coming into this, and I decided that the next time I was home — because I was trying to see my kids on my recovery week for the two days before I went back to restart chemo — I would like to shave my head since it looked like it was all going to fall out. That was after my first cycle.
I had my kids shave my head at a chain place that does free haircuts for cancer patients who are transitioning, so that was free of charge. They let my kids hold the clippers. My son didn’t want to, but he watched. I just wanted it to feel not scary, not for me to come back and look completely different. The hair was the first thing. I didn’t feel so bad at first, but each successive chemo cycle, each time I did chemo for a week and then recovered, it got worse.
Chemo Side Effects and Lasting Impacts
I was more sick. I had cognitive impacts from the Red Devil, like I didn’t know where I was or couldn’t think. I still have that. I have memory issues now, short-term memory problems, and it feels like a lot of my memory during that time was wiped. Almost all the stuff they list — fatigue, nausea, weight loss, weight gain, bloating, sensitive skin, hair falling out — you have at least some of it.
The thing that I didn’t experience, which I’m grateful for, is pain from the shot to stimulate T cell growth from my bone marrow. Bone marrow reproduces rapidly and is disproportionately impacted by chemo, hence your white blood cell, red blood cell, and platelet counts go down. You get this shot to stimulate T cells to get you some white blood cells. A lot of people have a lot of pain with that — acute pain — but I didn’t have any, so I was grateful for that.
Anticipation and Strategy for Surgery
I was excited; I was so excited for surgery. I knew there was potential for a negative outcome, but it felt like no matter what, it was probably going to be better after surgery in some way. Two of my best friends came in town — one I’ve known since I was two, and one I’ve known since sixth grade — and they stayed with me before surgery so I could say whatever I was feeling, just be honest, just experience it and not be performative.
On the day of surgery, I felt like I was informed about what the doctors were going to do. I felt supported by the care team. I asked a lot of questions and all my questions were answered beforehand. I was concerned they could go in and decide they needed to remove my whole right lung, which would have reduced my lung capacity and put strain on my heart, which was already affected by my chemo. That affects how you move around through the world and what other illnesses down the road may do to you. I knew there was this domino effect of how bad it was going to be when they got in there.
They were going to remove it en bloc, basically take everything out that it touches, plus a range around it. I knew it could affect my pec muscle and my breast — my pec muscle is function, and my breast is form, aesthetics, ego, and self-image. I knew I’d be waking up bald with no lashes, so I was like, “Okay, hopefully it’s the least scope possible.”
Surgical Outcome and Sharing Tumor Photos
When I woke up and they said they’d only taken one lobe of my lung and we thought they had clear margins, I was so thrilled. I was so excited. I felt so happy. The first thing I told my mom was, “Okay, now I can sign up for a marathon next year and do that. We’ll see.” It might be a walking marathon because I’m actually not that into running; I don’t know why I said that.
The reason I chose to share [tumor photos] is that I’d be super curious if someone said, “I had this tumor removed and it was this big.” I’d be like, “How big? How vascular was it? Where was it?” I have those questions, so I felt comfortable showing someone. I also thought it was cool that two ribs were involved. I thought it was cool that we have technology to still help me be fine with that.
Sharing on TikTok and Helping Others
After sharing my story on TikTok, I had a couple of people reach out and say, “What you’re describing, I experienced that, and I went to a doctor, they said it was fine. They ran my blood tests and they said it was fine. What should I do? What do you think?” I said, “I’m not a medical professional. I don’t have any medical training at all. But if you feel like your questions aren’t being answered by the doctor you saw, I think you should go see someone else and write down what you’re going to say and the questions you’re going to ask before you go in, so you feel less confused and more confident. This is what I asked for in your situation, but, obviously, yours might be different.”
Two people got back to me, saying that they had found out they had cancer. I’m sure thousands of people saw that video, but that was moving to me. It felt like even if there is a little bit of discomfort, I’d rather share my experience and hopefully one person gets a diagnosis a little bit earlier, so they have more options and treatment. That first video was before surgery, and that was part of what drove me to do my video after.
NED Status and Upcoming Surgery
I don’t think I’m in remission yet. Maybe I don’t know the right words, but I was allowed to go back to work. I went back four weeks after my surgery. I had scans after three months and my scans were all clear. I’m NED, or no evidence of disease. I have surgery scheduled next weekend on November 1st. I think after five years of being NED, I’m considered in remission, but I think that’s how the words work.
The surgery I’m having is a reconstruction. Not cancer-related. Just repairing and helping, hopefully, maybe some scar tissue adjustments.
My Biggest Emotional Challenge
I think the biggest challenge is the mortality aspect of it, the knowledge that no matter how this goes, I’m less likely to survive as long. I’m more likely to have a more complex health outcome if I live to an older age and have something else that’s just normal that happens to older people. It’s going to be more complicated because of my history.
There’s a chance it comes back and next time, it’s not something that can be surgically removed. I’ve already had the lifetime maximum dose of the Red Devil chemo, so I can’t have that again, and that’s one of the more effective treatments.
The thing that I struggle with is that my children didn’t do anything. They didn’t do anything to deserve to have a mom with cancer. I hate that they’ll be negatively impacted by my diagnosis. I don’t want them to wonder if their mom will be at their wedding, their high school graduation, or hold their first child. It’s not as much about me and what I may or may not experience, because I don’t worry about that. I just don’t want them to miss out on something or not have the support that they deserve.
Parenting Through Treatment
To a pretty significant extent, it’s been a huge blessing to have children because it made all of this so easy, all the decisions so easy. I was going to do the hardest chemo. I was going to do the surgery. I was going to do all of it because there was no other option. After all, I needed to be there for my kids.
Maybe if I didn’t have those motivators, I would have thought longer or taken a little bit of time, or maybe I wouldn’t have gone back and asked for answers as many times as I did. But my health was more than just myself; it was for my kids. They responded in different ways to the stress of my being gone and being sick, but I don’t think they ever worried that I would be there. They were just sad at how long it was between seeing me. In that way, I was successful as a parent in protecting them from a lot of the worst parts, the uncertainty. I don’t think they felt that much. They were a very important part of my ability to move through the treatment.
Meaning of Survivorship
I guess technically it means living, right? I think it means using the time that I have and the health that I have in the best ways that I can, and never forgetting or letting go of that sense of vulnerability that allows me to appreciate my life and my kids as much as I do now. I think I took a lot for granted. I was hard on myself in ways I didn’t need to be. So I think, it sounds perverse, but I desperately want to hold on to some of the realizations that this experience has given me.
Hopes, Dreams, and Everyday Goals
I don’t think I have huge new dreams. I want to be a better friend. I want to be a better mom. I’m starting to think about giving myself a year from the date of my surgery to push myself in certain ways. I do want to do a marathon; I think I want to do it walking. I want to travel. I want to do an international trip. I have it planned a little bit. Between work and kids and everything, I want to do that. I want to be more in the moment and less in my own head, thinking about what the next thing is. I think I robbed myself of a lot of joy in fellowship with other people or being with my kids by thinking about the next thing I needed to do. That’s what I want to hold on to.
My Advice and Message to Others
My biggest message I would want people to take away is that of advocacy, self-advocacy, and trusting yourself. If you think something is wrong, you don’t think you’re getting the answers you need, or you don’t understand what you’re being told, ask again. Advocacy is not about being a pain. There’s nothing inconvenient about needing answers when you have something suspicious going on in your body.
I think that’s so important, especially in women’s health, because there are so many things going on between hormones and changes in life stages that can affect the way that you experience your own body. Those things don’t have to be mysteries. There could be something else going on. In my case, several of the doctors I saw were looking for horses. I joked with my mom: they were looking for horses, but it was a zebra. You have to keep asking questions and keep advocating for yourself.
My Thoughts on Mental Health and Hope
I don’t know that this is part of my story necessarily. It feels like it’s part of everybody’s story. Just the importance of mental health hand in hand with physical health, and not toxically positive, but a positively-oriented attitude. Visualizing success, making sure that you’re using resources that are available to you, and setting goals that are external and outside of your cancer treatment and diagnosis. Choose a concert you want to go to eight months after your diagnosis and start making plans and outfits. Whenever you feel bad, don’t feel like you have to hide it. Make sure you’re asking for help.
Symptoms: Pain behind left knee, needle-like sensation in left foot Treatments: Surgery to remove what was thought to be benign tumor, chemotherapy, final surgery, radiation (36 sessions) ...
Non-Hodgkin Lymphoma at 29: How Ashley Navigated Motherhood and DLBCL
Ashley’s experience with diffuse large B-cell lymphoma (DLBCL), a type of non-Hodgkin lymphoma, began during a period that should have been filled with new beginnings and joy – the arrival of a new baby into her life. Instead, Ashley, now a mother of three, confronted a growing list of symptoms shortly after her pregnancy when dizziness, cardiac complications, and difficulties breastfeeding all led up to an unexpected, and life-altering cancer diagnosis.
Being diagnosed with DLBCL weeks before her 30th birthday set Ashley apart from the typical patient profile, as most individuals face this diagnosis later in life. Her youth contributed to challenges in being heard by her medical team, intensifying her frustration as treatments like chemotherapy caused debilitating side effects. Emotional struggles compounded Ashley’s physical battles: fear of leaving her children, grief over lost moments with her newborn, and the continual responsibilities of motherhood that do not pause for illness.
Despite assurances from leading cancer doctors regarding advances in treatment options, Ashley’s cancer responded poorly to initial therapy, necessitating additional interventions, including CAR T-cell therapy, which required extended separation from her family. The transition from hope to uncertainty was difficult, but new developments with bispecific antibodies and ongoing research provide Ashley and other patients reasons to hold onto hope for recovery and better outcomes even amid refractory disease.
Ashley’s experience is marked by transformation, not just physically but emotionally and spiritually. She learned to lean on her family and faith for support, grappled with feelings of guilt and anger, and emerged with the conviction to advocate for herself and encourage others to trust their intuition. Her story is a testament to the unseen emotional dialogue cancer patients navigate, and to the importance of self-advocacy, community, and accessible innovations in cancer care.
Key Story Takeaways:
Trust and advocate for your own body; patients know their symptoms best and should persist until they are heard.
Emotional struggles, like fear, guilt, and anger, are often invisible but just as challenging as the physical aspects of disease.
Family support and faith provided critical anchors for Ashley, helping her endure even the most difficult days.
DLBCL can affect patients of any age, and younger individuals may face unique challenges in being taken seriously by the medical team.
New therapies, including CAR T-cell therapy and bispecific antibodies, offer hope even in refractory cases.
Advocacy and self-acceptance are vital; patients experiencing life-altering conditions deserve compassionate care and respect for their experience.
Name: Ashley P.
Age at Diagnosis:
29
Diagnosis:
Diffuse Large B-Cell Lymphoma (DLBCL)
Staging:
Stage 4
Symptoms:
Feeling like holding breath when bending down or picking up objects from the floor
Waking abruptly at night, feeling “off”
One episode of fainting (syncope)
Presence of a large mass in the breast
Treatments:
Chemotherapy
Bridge therapy of chemotherapy and radiation
CAR T-cell therapy
Thank you to Genmab and AbbVie for their support of our independent patient education program. The Patient Story retains full editorial control over all content.
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
I didn’t realize how big the lump was. It was literally the size of a baseball. But it didn’t raise any red flags.
Ashley P., Stage 4 DLBCL Patient
Facing the Unexpected: Early Signs and Diagnosis
Ashley P.: I’m not afraid to die by any means. I would say I fear leaving my children and leaving them without a mom.
What should have been one of the happiest times in her life became filled with worry when Ashley was diagnosed with a cancer she hadn’t heard of before: non-Hodgkin lymphoma, specifically diffuse large B-cell lymphoma or DLBCL.
Ashley: I started having symptoms while I was pregnant. I had our baby in December 2023 and at the end of my pregnancy, I was having a lot of complications with my heart rate. In February 2024, I started to feel super lightheaded, as if I was hanging upside down for a very long time. It reached a point where I was getting concerned about being alone with the baby. I felt like I was going to pass out. What if I’m holding him and something happens?
Dizziness wasn’t her only concern. Ashley also started to have trouble breastfeeding. A trip to see her midwife helped lead to the diagnosis.
Ashley: I went to nurse him one day and I couldn’t extend my nipple. It was completely caved in. I tried everything to get it unclogged, like hot showers and massages, but they didn’t work, so I reached out to my midwife.
I didn’t realize how big the lump was. It was literally the size of a baseball. But it didn’t raise any red flags. When I saw my midwife, she looked at it and said, “Ashley, this is very, very large. You need to go to the breast cancer center,” which was wild to me.
I went in and they did biopsies on both breasts and the lymph nodes in my armpits, and that’s how I found out.
We have more FDA-approved medicines for lymphoma than for any other cancer… It’s awesome because it means we have more options for patients
Dr. Joshua Brody, Hematologist-Oncologist
A Young Mother and a Rare Diagnosis
The average age for a DLBCL diagnosis is in the mid- to late-60s. Ashley says being diagnosed at a much younger age made the treatment process even more frustrating.
Ashley: I found out I had cancer literally two weeks before my 30th birthday. They said that I was so young and that everybody they usually see with this cancer is in their late 70s. They told me that it was going to be an absolute breeze.
I had a very hard time being heard because I was so young. Chemotherapy rocked my world. I was extremely sick. I barely had time to recover between rounds. I kept telling my oncologist that I was so sick and miserable, and the response that I kept getting was, “You’re young. You shouldn’t be.”
DLBCL can be a devastating diagnosis. But top cancer doctors, Dr. Amir Steinberg from Westchester Medical Center and Dr. Joshua Brody from Mount Sinai, want people to know that there’s a lot of hope.Watch their discussion.
Dr. Joshua Brody: We’re very lucky because, even though lymphoma is technically the fifth most common cancer in America, we have more FDA-approved medicines for lymphoma than for any other cancer, even more than for breast cancer, which is so incredibly common. It’s awesome because it means we have more options for patients
Dr. Amir Steinberg: There’s so much that’s changed in the last 20 to 30 years, most especially in the last five years. Things are changing for the better so rapidly for patients. As doctors, we have so much to catch up on and stay up on in terms of the knowledge out there, but it’s totally worth it because it will make patients’ lives better and more fulfilling.
Despite assurances from doctors, treatment was daunting.
Ashley: I don’t think people understand that you can see all the physical changes. You can see the hair loss, the bloating, the puking, and even the literal color draining from their face. But you cannot see their inner dialogue. You can’t see them fighting for their lives. You can’t see the anger or the conversations with God about why. Questions of, “Did I do something wrong to deserve this?”
The world doesn’t stop… You still have to show up and be a mom and a wife… and that is such a hard challenge.
Ashley P., Stage 4 DLBCL Patient
The Unseen Struggle: Emotions Behind the Experience
As a mom of three, Ashley dealt with mixed emotions of guilt, stress, and sadness over the experiences she lost.
Ashley: I honestly think I got robbed of the joy. He’s my last baby and I had this huge goal of nursing. It was easy with him. I had all these plans, but I was in so much pain from my cancer.
Then I have a nine-year-old and an almost five-year-old, so it was difficult juggling that and trying to figure out the best way to tell them what I was going through. That was probably the roughest part.
The world doesn’t stop and that thought came into my head so many times while I had cancer. You still have to show up and be a mom and a wife. You still have to be all of these things while battling the biggest physical challenge that you’ll ever go through and the biggest emotional and mental struggle that you’ll ever have to battle. You still have to show up for everybody around you and that is such a hard challenge.
One of the hardest emotions Ashley had to deal with was anger.
Ashley: I knew that I was mad and not the best version of myself. Then you have this feeling of complete guilt. What if you die and this is who you showed up as and who you left as? This is how you treated your fiancé and your kids? Don’t you value life? Didn’t you say that you wanted to show up differently? Didn’t you say that you were going to be a completely different person because now you know the value of life and how it can be taken away? Now, you have this complete guilt trip of who you’re showing up as. But at the same time, you’re so mad. You’re so mad.
I thought, ‘What if I go through all of this and then I still have cancer?’ That was something that I didn’t want to face.
Ashley P., Stage 4 DLBCL Patient
During those moments, Ashley leaned into her family and her faith.
Ashley: I’ve seen other people talk about it, but there is a sense of peace and knowing that I have not experienced in my life. Definitely not the peace that carried me through. I had to be here for my kids. There were so many times when I thought that if I were doing this for myself, I wouldn’t have gone through it. It was too much. It was so hard that I truly don’t know if I would have shown up in the same capacity.
CAR T-cell Therapy and Next Steps
After six rounds of chemo, Ashley thought the hardest part was over. But her DLBCL was refractory, meaning it did not respond well to initial treatment.
Ashley: When I did my chemo, they didn’t even talk to me about the steps and what they would do. Again, age was a huge factor. We did have conversations about other things out there. It went from a 70% chance of beating this and the odds are good of going to Mayo, to my odds going down to 10%. The biggest concern was waiting for the CAR T-cell therapy. But after, they told me, “This is your last option. If this doesn’t work, there isn’t anything more out there for you to do.”
CAR T-cell therapy came with new challenges.
Ashley: When you go through CAR T-cell therapy, you have to be gone and by the hospital for 47 days, away from your family. I thought, “What if I go through all of this and then I still have cancer?” That was something that I didn’t want to face. I didn’t even want to have that be a possibility. I just wanted to be done.
Whenever possible, we try to offer trials because that’s how we advance the science and get higher cure rates. They’re essential.
Dr. Amir Steinberg, Hematologist-Oncologist
Ashley’s experience reflects the complexity of DLBCL treatment. It’s one of the reasons why doctors are constantly looking to new research in clinical trials for answers. One of the answers is a newer option in immunotherapy called bispecific antibodies.
Dr. Brody: Even for people who relapse in the first year or in their third line, there is great evidence for bispecific antibody plus chemotherapy. Overall, it certainly seems to be a bit safer than transplant, maybe even safer than CAR T-cell therapy, and it’s a lot more accessible to folks who are being treated in the community when they don’t have a CAR T-cell therapy center nearby. If you’re getting more options, then that can only be a good thing. People would rather have a clear answer. But they would rather have better therapies and better options.
Dr. Steinberg: Whenever possible, we try to offer trials because that’s how we advance the science and get higher cure rates. They’re essential.
Advocacy and Self-Empowerment: Lessons Learned
While Ashley eventually found a great and supportive medical team, she wishes she had advocated for herself more from the beginning.
Ashley: That is one thing I regret and one thing I always tell somebody. You have to advocate for yourself. I’m not that person. I’m very shy. I don’t want to make people upset. I want to make everybody happy. I struggled very much with advocating for myself.
Advocate for yourself. If something doesn’t feel right, if you know something’s wrong, or if you feel sick or in pain, talk about it until you’re blue in the face and somebody listens to you.
Ashley P., Stage 4 DLBCL Patient
Advice for Others: Faith, Family, and Resilience
Ashley’s advice to others? Advocate for yourself, lean into your faith, and learn to accept the changes.
Ashley: Be honest with how you feel. Have those hard conversations. Lean into God as much as you possibly can because at times, that’s literally all you have. You would be very surprised at what you’re willing to go through and what you’re willing to overcome for the people that you love. It’s almost like an adrenaline rush to make it through.
Advocate for yourself. If something doesn’t feel right, if you know something’s wrong, or if you feel sick or in pain, talk about it until you’re blue in the face and somebody listens to you. You know your own body. You have that intuition for a reason and you know when something is wrong.
Moving Forward: Transformation and Community
Ashley: You make it. You make it out alive. You will never be this version of yourself again and that is completely okay. Sometimes we have to go through something completely terrifying and life-changing to figure out who we want to show up as and what’s important to us. It’s going to suck so badly. But you find out who your people are. So many people love you. And you make it.
Looking to the Future: Treatment Paths for Relapsed/Refractory DLBCL
Hosted by The Patient Story Team | 1h 9m 30s
Hear Dr. Joshua Brody and Dr. Amir Steinberg discuss new treatments for relapsed/refractory DLBCL and how academic–community collaboration helps patients access the best care. Moderated by DLBCL Advocate Stephanie Chuang.
Webinars in this series must be completed in order.
Pick up where you left off →
Thank you to Genmab and AbbVie for their support of our independent patient education program. The Patient Story retains full editorial control over all content.
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
Symptoms: Feeling like holding breath when bending down or picking up objects from the floor, waking abruptly at night feeling “off,” one episode of fainting (syncope), presence of a large mass in the breast
Treatments: Chemotherapy, bridge therapy of chemotherapy and radiation, CAR T-cell therapy
Live with Hope for Yourself: Deb’s Multiple Breast Cancer Diagnoses
Deb has lived with metastatic breast cancer for seven years, originally diagnosed stage 4 triple-positive breast cancer in 2018 while raising her young daughter. Five years later, in 2023, she discovered a new lump and learned she had developed a second, unrelated breast cancer that was early stage and had a different profile.
Her life today is a blend of motherhood, advocacy, and strength. A longtime activist and English–Spanish interpreter, Deb has used her voice to push for understanding, empathy, and better support for people living with breast cancer. What began as two life-altering diagnoses has become a commitment to helping others feel seen, supported, and less alone.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Deb’s story began in 2016, when she found a lump while she was breastfeeding her daughter, but it was dismissed as a clogged milk duct. Two years later, the lump had not only persisted but had also grown, leading to a de novo metastatic breast cancer diagnosis. The “de novo” distinction means the initial diagnosis was already at stage 4 or metastatic. “I didn’t know what metastatic meant,” Deb recalls. Once biomarker testing was complete, she learned it was HER2-positive, hormone receptor-positive breast cancer, or “triple positive breast cancer.” The early months were filled with fear, tests, and treatments, but also immense love from her community, who helped her care for her young daughter. When she reached no evidence of disease in 2018, her optimism clashed with the reality that metastatic breast cancer is often managed, not cured.
Living with both bipolar disorder and cancer, Deb describes her reality as one of constant adjustment. “Some days, the mental illness is harder on me than the breast cancer,” she says. Her transparent advocacy helps others balance emotional health with ongoing treatment.
In 2023, Deb faced a new, separate early-stage breast cancer diagnosis. Treating both simultaneously tested her physically and emotionally, but her resilience remained unshaken.
Deb’s breast cancer experience continues to evolve. Today, her scans again show no evidence of active disease, yet she acknowledges the uncertainty that remains including being on active treatment. What keeps her grounded, she says, is hope: hope for herself, for her daughter, and for a better understanding of metastatic disease. “Do it for you,” she tells others living with this diagnosis. “You deserve to have hope for yourself.”
Watch Deb’s video above and scroll down to read the edited transcript of her interview for more on how:
Metastatic breast cancer is lifelong and demands ongoing adaptation
Hope can evolve, from doing it for others to valuing one’s own life and wellbeing
Mental health challenges can be as significant as physical ones
Support networks and advocacy communities provide essential strength
Parenthood can coexist with cancer care when boundaries and love guide the balance
Name: Deb O.
First Diagnosis:
First Diagnosis: De Novo Triple-Positive Breast Cancer
Second Diagnosis: ER-Positive, HER-Negative Breast Cancer
Staging:
First Diagnosis: Stage 4
Second Diagnosis: Early-stage
Age at Diagnosis:
First Diagnosis: 37
Second Diagnosis: 42
Symptoms:
First Diagnosis: Appearance of lump that later on increased in size, orange peel-like skin around inverted nipple, persistent ache under right arm
Second Diagnosis: appearance of lump
Treatments:
First Diagnosis: Chemotherapy, targeted therapy, hormone therapy
Second Diagnosis: Surgery (mastectomy), chemotherapy, radiation therapy, CDK 4/6 inhibitor
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
I live with metastatic breast cancer, HER2-positive, hormone receptor-positive. I’ve been living with it for seven years. I also have an early-stage breast cancer diagnosis from 2023. I’m living in southern Utah right now.
I’m a mom to a beautiful 11-year-old daughter. Before motherhood, I was an activist for over 20 years. I’m also an English–Spanish translator and interpreter, with much of my time spent volunteering.
Originally from California, when I moved to Salt Lake City, I found activist groups that interested me and poured my heart into community involvement. Everything changed when I had my daughter, but I continue to do advocacy now, with my focus shifting towards breast cancer.
Advocacy is incredibly important to me; I’ve moved my background in mental health advocacy into the breast cancer world, because it’s the life I’m living now.
My daughter Estelar—her name means “stellar”—is the biggest-hearted, kindest kid you’d ever meet. She’s in sixth grade and was only four when I was diagnosed, so this is all she’s ever known: mom living with cancer. She’s very mature about it, and I take her to therapy so she has ways to cope. Estelar is a creative kid; she loves Roblox and graphic art, and she’s an artist, though she didn’t get that from me. She’s always trying to bring a smile to everyone she knows and is very protective of me. Sometimes, she takes on a caregiver role, and I have to remind her that I’m the mom and she’s the daughter. She’s incredibly sweet. Sometimes she offers, “Mom, you don’t have to walk me this morning if you’re not feeling well.” But I cherish our walks to school and always try to be there, unless I really can’t. Estelar has adjusted remarkably, though I do worry about her falling into caregiver habits. “I don’t want her to think that’s her job in any way”.
Therapy has helped a lot. When I was diagnosed, a hospital social worker took Estelar around the hospital and explained things in child-friendly terms, even using a doll. She’s always been aware that things are changing. She struggles sometimes, feels sad, but overall has been processing it very well. She’s able to talk to me about her worries, and she calls my infusion days “port medicine day.” It’s super cute. She knows I’ll feel a little worse the next day, but she’s so supportive.
My diagnosis and how my family and I handled it
The story of my diagnosis actually begins before 2018. In 2016, while breastfeeding, I felt a lump in my right breast. At an appointment, my provider told me it was probably just a clogged milk duct, saying I was too young for breast cancer and had no family history, so I let it go.
Life got busy as a single mom of a two-year-old, and, as is common in Latino families, mothers often put their medical needs aside. But two years later, the lump had grown. In 2018, after encouragement from a new partner, I scheduled an appointment, and things moved quickly.
I was seen at a clinic; the second provider, a female physician, took things seriously. Within a day, I was scheduled for a mammogram and a biopsy at the Huntsman Cancer Institute. I was alone during the biopsy, which was incredibly painful and frightening.
Soon after, I received the diagnosis call while boarding a train with my four-year-old daughter en route to preschool. I shared the news matter-of-factly with a friend on the train, holding back emotion for my daughter’s sake: “I’m a mom, and the day still had to go on. I would deal with this later.”
Later that day, reality hit as I was walking home, tears streaming down my face, carrying my daughter. It was a slow realization that everything would change. Nothing was ever going to be the same again.
Navigating urgency and my first treatments
That first month after diagnosis was a whirlwind. The hospital scheduled endless tests: PET/CT scans, a bronchoscopy, and port placement for chemotherapy.
I hadn’t even decided what I wanted to do yet, but there was a sense of urgency. My oncologist reminded me, “You have a four-year-old, and this is aggressive cancer.” Therapy helped, and my top priority was doing whatever it took to be there for my daughter. Three weeks later, I was told my cancer was stage 4, metastatic, throughout the mediastinum and lymph nodes.
It was a lot of uncomfortable first-time experiences, and honestly, I’m not really sure how I got through that, but I do know that I had a lot of community with me. Community support was invaluable; friends and community members helped with my child, appointments, and rides.
By June 1st, I started my first chemo. My sister-in-law Jenny left her job to help, especially with my daughter. That summer, despite treatment and illness, we tried to have fun: concerts, dating, and staying active in the community. Through it all, I didn’t know what “metastatic” truly meant and thought I might beat cancer.
After chemo, my first PET scan showed “No Evidence of Disease” (NED). I celebrated, believing I had beaten cancer, but my doctor explained I’d need treatment indefinitely.
I didn’t have time to feel angry because everyone was so excited by the clear PET scan news. The word ‘indefinitely’ just weighed on me.
Advocating, community, and mental health
Reaching NED was both joyous and sobering.
For two years, I didn’t seek out other women with metastatic breast cancer; I didn’t want to know. But the pandemic changed things, and I found a strong online community. Treatment, scans, and appointments have become normal over the past seven and a half years.
I also live with bipolar disorder, which complicates everything. Some days, mental illness is harder than cancer. Abigail, an advocate friend, helps lift my spirits, shares memes, and trains me as a mentor for other patients.
My second diagnosis: finding out I had a new cancer
In 2023, I was ready to celebrate five years of living “NED” with metastatic breast cancer. But a month before my scheduled scans, I found a new lump while doing a monthly self-check.
Scan day came just as Metastatic Breast Cancer Awareness Day arrived. I was hopeful, but my scan wasn’t clear. The whirlwind began again.
This time, I was older, without my in-person community, and faced a changing body from years of medication. After a painful biopsy, my partner by my side, the results showed it was a completely different breast cancer: hormone receptor-positive, HER2-negative. I got a second opinion from my first oncologist, who confirmed that it was a new cancer, not progression.
Treatment required chemo again, a pause in my metastatic regimen, and surgery, which I hadn’t been eligible for during my initial stage IV diagnosis. I had a mastectomy, another course of chemo, and suffered through radiation and new side effects like lung scarring. This time, my daughter had more questions, and could see I wasn’t as strong as the first time. You have to keep adapting, keep adjusting. That’s what it is like, living with multiple breast cancer diagnoses.
Months later, a clear scan brought relief. I could return to my regular treatment schedule for metastatic disease.
Living with metastatic breast cancer
Metastatic breast cancer never really goes away.
There’s worry; will the earlier-stage cancer come back and metastasize? Will progression happen?
Doctor appointments and scans consume my time, and sometimes it’s hard to find the fun I used to have.
Advocacy and support organizations
Any type of community you have is so beneficial when you’re going through a diagnosis.
Three organizations have been especially supportive. The first is Project Life, an online wellness house for women with metastatic breast cancer, with programs like journaling, yoga, and support sessions.
The second, Living Beyond Breast Cancer, holds advocacy training and mentorship programs, especially for young women diagnosed under 45.
The third organization, For the Rest of Us, is an online empowering community for women of color, focused on community education and fundraising.
Meeting others with breast cancer, in-person and online, brings joy and helps fight isolation, even though it’s tough losing friends to this disease.
My advice for others
There are many misconceptions about metastatic breast cancer. People need to know it is lifelong and incurable, and we need research for a cure.
More people are living longer, thanks to medication advances, but also remember we are more than our diagnosis. We are mothers, daughters, partners, and community members.
Hope can be elusive, especially at low moments, even before cancer. But it’s vital. Don’t just have hope for your children or family. Have hope for you, because you matter, exactly as you are.
You’re not alone. Educate yourself, take care of your mental health, and seek counseling or support groups. Don’t wait too long to meet other people who get it.
Cancer Details: ER positive = estrogen receptor positive 1st Symptoms: Dimpling/lump found on breast Treatment: Mastectomy, AC/T chemotherapy, hysterectomy, reconstruction
Sam Chooses Hope in the Face of Grade 2 Brain Cancer
Sam is a passionate photographer and a proud mom to a six-year-old boy named Felix. Her life took a terrifying turn when a series of seemingly minor symptoms led to a diagnosis of grade 2 brain cancer (astrocytoma with IDH1 mutation).
Interviewed by: Nikki Murphy Edited by: Chris Sanchez
Sam’s experience began subtly, with feelings of being “off.” She attributed this feeling to holiday stress and the hustle of running her business. She also experienced occasional fatigue and what she thought was food poisoning. But little did she know that things would soon escalate.
One night, Sam collapsed in her bathroom and suffered what would be the first of many seizures. Her husband acted swiftly, calling 911. She woke up in the ER to the shocking news that they had found a mass in her brain that was causing her seizures. An MRI confirmed the diagnosis, and Sam had to undergo emergency brain surgery.
Grade 2 brain cancer (astrocytoma with IDH1 mutation) had more than just physical effects; it also deeply impacted Sam and her family’s mental well-being. (Editor’s Note: An astrocytoma is a tumor that develops in the brain or spinal cord and grows from star-shaped or astrocyte cells. An IDH1 mutation is a mutation in the enzyme-making IDH1 gene, which can result in cancer.) Sam spoke with her son Felix honestly, aiming to teach him about what was happening to her instead of making him afraid. Her husband was overwhelmed by the sudden shift in their family dynamics. Sam realized the importance of open and honest dialogue, emotional check-ins, and seeking professional support in helping her family maintain its mental health.
After her surgery, Sam had to have radiation treatments and chemotherapy. She found the treatments grueling, given the lifestyle adjustments, dietary restrictions, and emotional hurdles she had to deal with as a result. But through it all, she was still able to find light in the darkest moments, whether through joking with medical staff or cherishing time with her son and husband.
Sam’s message is clear: seek medical advice when something feels off, prioritize self-care, and embrace support from those around you. Watch her video and find out more about:
How a seizure led to a completely unexpected diagnosis.
The subtle symptoms Sam thought were due to holiday and work stress.
How she prepared her young son Felix for really tough news.
The surprising realities of being awake during brain surgery.
Why mental health is so vital in cancer care.
Scroll below to read the full transcript from Sam’s interview!
Name: Sam D.
Age at Diagnosis:
37
Diagnosis:
Brain Cancer (Astrocytoma with IDH1 Mutation)
Grade:
Grade 2
Symptoms:
Consistently feeling overwhelmed
Seizures
Treatments:
Surgery: awake craniotomy
Radiation therapy
Chemotherapy
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
I am a mom to an amazing six-year-old boy. He is the light of my life. I own a photography business that brings me so much joy.
I remember going into the bathroom and brushing my teeth afterward. And I remember setting my toothbrush down, and I very vaguely remember falling backwards. But I don’t remember anything beyond that.
I was so stunned at the entire event. And I think, knowing that when you hear you have a mass in your brain, I don’t think I registered immediately that that meant I have a brain tumor.
When I first noticed something was wrong
I started feeling a bit off. The weekend before I was admitted to the hospital, I started just feeling off, and I thought it was compounding stress. We were in the closing window to Christmas, and we hosted Christmas. My initial thought was that I was just stressed to get to the end of the year. And I had said something to my husband, we were snowboarding that day, and I said, I just don’t feel 100%. I don’t feel like myself. I feel like I’m just too stressed to make commitments. And I think he brushed it off like, yeah, we’ve got a lot going on. And as did I. And then we went back to Denver and stayed. We’re getting ready for the week, the weekend to end into the beginning of the week.
And on Sunday night into Monday we I ended up experiencing what I thought was food poisoning. And I was experiencing that every once in a while for the last few years, and I just assumed that I was maybe developing an allergy to something or developing a food intolerance. But what led me to be sick for a solid four hours? The last time I got up, I fell in my bathroom and fell into a seizure. Thankfully, my husband was home and caught it immediately and called 911 when he realized I was seizing. And that it was a very short time, I think, in the grand scheme of things. And I don’t know if I would have ever assumed that food poisoning like symptoms, and maybe not being able to bear the weight of stress was causing me to, or showing me that I had something going on internally.
What happened next
I got admitted to the hospital. The newest and greatest one, actually, which was really lucky timing for me. I had my seizures around 4:30 in the morning, and I came to between 730 and eight in the morning. And by that time, I was in an emergency room. I was admitted into an emergency room, an actual room. And my husband and son were sitting on the waiting room chair there. And when I woke up, my husband said, Sam, you had several seizures this morning. They did a CT scan when you got here. They found a mass in your brain. They’re prepping you for an MRI, and a neurosurgeon is coming to talk to you.
So that was the first thing I heard when I woke up. And I believe, or I feel like I asked him to repeat that because I was so not only out of it, but extraordinarily confused that I was in an emergency room and had zero recollection of how I got there and the events that led up to it. I went in for my MRI. Very shortly after, the neurosurgeon was in the office or in the emergency room with me. And he said, You have a mass in your frontal right lobe. It is putting pressure on your brain, which is now causing these seizures. You need to have surgery immediately in order to survive.
The moment everything changed
I was so stunned at the entire event. And I think knowing that when you hear you have a mass in your brain, I don’t think I registered immediately that that meant I have a brain tumor. It did take me a little bit of time to become more cognitively aware later that day, and just really sit with the fact that I have a brain tumor and they’re just going to remove it and everything’s going to be fine. And that’s really where my head and positivity came from. And that’s far from the reality of what having a brain tumor really is. And it was a little bit disheartening knowing that reality later.
And as things went on, I think it took me a while to really process what it meant to have a brain tumor and to hear that you have a brain tumor. I had just turned 37 the month prior, so I was just recently I was hitting my late, late 30s and making jokes about getting older. But I believe that getting older is a blessing, and I wasn’t quite prepared to be the youngest person in a treatment center for the condition that I have.
How I prepared for surgery
It was an emergency call to my lawyer to make sure my will and my living will were up to date. And that was really where my stress was. I was making sure that my son Felix was just taken care of if something were to happen to me. His dad’s passing when he was two is incredibly tough. And just him having to go through all that, and him and I together, and then now getting married again last year, just a few months before I found out I had a brain tumor.
I wanted to protect Felix. Even while being in the hospital and being tended to by the nurses and doctors, Felix was there too. I really wanted to make it positive and that being in the hospital wasn’t always scary, and that they are there to help fix the problem, and that that’s what they went to school for. So I’m trying to use that with him to be positive. But I was terrified for him. And later, we had those conversations too. He’s pretty in touch with his emotions and seemed pretty scared. My husband also did. And I think just the burden and weight.
I hate to say burden, but the burden of taking on our entire household and our life all of a sudden at four in the morning, I was suddenly not in the home. I wasn’t able to drive for months and everything, and we had no idea going into it that that was it. But I felt the fear in his voice when he told me, and I can just tell I had felt it over the last few months as we’ve digested and talked about the initial moments and being in the hospital and how much stress that and a burden that he took on himself to go ahead. Just taking it in stride together has been the most positive part.
I was awake during my brain surgery
They admitted me to the ICU and monitored me. And he said that very kindly and humbled me in the thought that I was I could leave and come back. I spent the first part of the week in the ICU taking various medications to make sure I didn’t have any more seizures and doing all the bloodwork, etc. to make sure I had I was properly set up for the procedure. And one thing that came up, because it’s on my right side and I’m left-handed, was that I had to be awake for the craniotomy as well. So I spent he prepped myself that it was going to be two hours for the surgery, that I would be in and awake for the entire surgery for two hours, and then I would be done and on my way. The surgery ended up being about 5.5 hours, and I was awake for the entire surgery.
I was a bit surprised to have surgery awake, as I mentioned. But I also was a bit surprised that I was sitting up the whole time, too. They have your head in a vise, and they kept me sitting upright. And what I remember was the anesthesiologist. I was sedated on my right hand side, and the surgeon was on my left hand side. I’m assuming he was kind of coming this way directionally. If I remember correctly, barely. Thankfully, there was enough sedation that I was lucid in that way. So sitting up, and I could hear everybody talking and you know, reacting to things and their interactions as well in terms of the frustration that I could. I could hear the initial grabbing of the tumor. And that’s why it took a little bit longer. They were hoping to also have initial pathology results back during surgery, and make sure they got as much of the tumor as they could. Generally, you can’t, because it does. If they go too far into the brain matter, they can certainly hurt you more than they can help you at that point, too. And that’s where people end up having dysfunction. I do remember him getting frustrated, and maybe he said that I got a little anxious because I reminded him that the Broncos were still playing every hour.
And they did call my husband and told him. Sam’s still saying that the Broncos are on tonight, so she’s in good spirits and really looking forward to this game. But the surgery itself was a bit shocking to be in and awake and alert for the actual procedure. The most jarring part was actually getting the incision of the bone out, like you’re sawing the bone, because I was awake for that. And there’s no way you can really make that not painful. So that was the most painful part. And my incision goes all the way. I have hair now. All the way around. I have some great pictures of my incision. But it was much larger than I expected. And the picture I took the night before. They did little shaved spots around where they mapped, where the vise was going to hold my head together. Really lovely photos of that, too. I wish I could capture how sad I felt about losing little tiny bits of hair there, where I did lose a large chunk of hair. With it, they shaved this the during surgery, and I lost more with treatment later.
I got my results five weeks later
A little bit of relief came when the doctor came in and he said, You have a grade two astrocytoma and a few mutations with it, one of them being IDH1. And that can be hereditary or it can be environmental. I found out after thinking that I had the hereditary one, that I actually have the environmental one. It can be stress or exposure to toxins and things like that. And there’s no way of knowing when or what toxins or what you can do to avoid that exposure. And the other mutation I have is that it has a very slow-growing brain tumor. I’ve had the actual tumor for years, if not decades. And the astrocytoma, at one point, mutated into that grade of tumor. And that’s likely what the stress and the IDH1 mutation are.
I was in shock. Yeah. And I felt like at that point, especially along the way, and the months following and the weeks before that, I had zero alone time. I most frequently hear that nobody wanted me to be alone if I did fall into a seizure or something happened, or I needed something that I was not able to do yet because I wasn’t able to, like, lift anything heavy or, you know, do a lot of normal, functioning things within the day. So I think the shock was a bit of biggest part of it for me was that I just was like, okay, I do have cancer. Like what’s next? And that I was really more focused on what the path forward is. Like, am I going to die, or is this like what is going to happen? And that is a very hard thing to hear, regardless. I found myself. Later on, any moment that I would be alone, especially in those first few weeks of really processing, I would find my little times to just like, have a little cry, or just shed a few tears just to feel like just to feel. But I didn’t want to. I didn’t feel like I was the doom and gloom, and I didn’t want people to feel sorry for me in that way. I did try to hold it to be a little bit more of a private grieving on that side.
I told my son a few days after I found out that I wanted to make sure it was an educational opportunity for us. I don’t think that when I was six years old that I understood or knew what cancer was or understood the impacts on the close circle. I kind of prepped everybody, and I said, Please don’t cry like I have cancer and have brain cancer. And encapsulated what my treatment plan was going to look like. And the positive side of extending my life and the quality of life. But the hopes that this doesn’t come back. And my husband. That’s a good question. But we were together, and I think he just really held a lot of space for me and just really wanted me to kind of lead with what emotions we wanted. We’ve had some cries. It’s been a hard year. First year of marriage. That’s been compounded on that.
What my treatment options were
One option that I did not get in the hospital before the surgery was you do nothing. Because I believe that before the surgery. And they did believe, too, that if I did nothing, my chances of surviving within days were probably a little to nothing. So, thankfully, my oncologist did say you can do nothing. And live with post-surgery and the chances of recurrence for the brain tumor to grow back, and to be more aggressive, and to ultimately take over. My chances of survival for five years were under 20%. Statistically, and for astrocytoma specifically, they generally have two types of chemo treatments along with radiation. So they do one that’s one, a single pill, and a radiation combination. And the other one is a cocktail of three different types of chemo and a radiation combination. The one with the three different chemos that you take has been around a little bit longer, and they’ve seen a lot of people live into multiple decades. And that one has a lot of research and positive results because it’s been around longer. The other new chemo, like single chemo and radiation, has not been around as long. And that one doesn’t have as much in terms of longevity that they know about yet, because it hasn’t been around long enough that they’ve used it on brain cancer patients.
But the other one seemed a little bit more positive. And I’ve since joined a bunch of brain tumor support groups and specifically for astrocytoma. And several people have lived for multiple decades with astrocytoma and have had the same treatment. So it made me feel much more comfortable going with that route. The oncologist did recommend the chemo route, which I went over the other one, just due to research, but he said both he felt very comfortable saying and hearing your life expectancy going up to 70 percent for over ten years. I measure the time with my son. If I were to pass in under five years, he would lose both of his biological parents before he’s 11 years old. And how was that fair to him? And that’s really what was making me most emotional. Was that fight for him and not putting him in a place in his life that he deserves? Hearing that and just mentally preparing to go through radiation and chemo was a big lift. I did call and make that decision about a week after I found out. And it moved pretty quickly. I was a week later getting fitted with my mask that they put on your face for radiation. And I was in radiation very shortly after. And chemo followed.
My treatment plan
I did kick off my treatment plan with 27 rounds of radiation. It was supposed to be 30, but the doctor had said that that was the higher end of treatment for me. But the way my resection for the brain tumor went and the way my scan looked right before, they felt comfortable reducing the session. I went five days a week, Monday through Friday, into these sessions, which were relatively easy for what they sound like. I enjoyed the nurses and the staff there. We had a good time, and I was coming in with funny jokes instead of saying my birthday every day because we all knew it. We were all friends there. Now that I would say, oh, did you know on my birthday this happened or that this happened that year? Or what was the top song in America? It was a fun way to bring things together in that way.
And about four weeks post, I started chemo. They did break that up. And I do a mixture of three different medications. Day one, it’s four cycles, and each cycle is 42 days long. And within those 42 days, I take three different medications.
One is an IV into our oral pills that I’m able to take at home. Day one is a single medication that I take. And it makes you kind of sick for a few days after. And I experienced quite a bit of nausea. I do manage through nausea, medication, and things that make it a little bit easier. And then I go in and do an IV infusion, and I start another medication for two weeks. And that one’s the most aggressive. I am not allowed to eat cured meats, aged cheeses. Most sauces or soy sauces. Anything that has any alcohol or soy, like any source. In general, I can’t touch rubbing alcohol. So there are a lot of restrictions, and it’s very difficult to eat out. I’ve utilized AI to upload different menus at restaurants and asked, “What can I eat at this restaurant with this medication that I’m taking?”
The plan moving forward
I’ve not had any clinical trial discussions. And my plan moving forward after this, for my understanding, is just to monitor. I’ll be getting MRIs every three months. My last one was in May and had positive signs of progress from the radiation treatment. My next one in three months should be this month in August. And I’ll have one more at the end of the year. So every three months for the foreseeable future, I’ve heard anywhere from 5 to 10 years. So that’s going to be a big stretch of that. But I’m hopeful that is something, and being patient with going every three months, that if anything does happen or anything does recur, we’re able to find it quickly, and maybe mitigate it from being too invasive. I would love not to have brain surgery again. But another fun fact that I found out is that once you find out you have a brain tumor, the chances of recurrence are high. No matter what you do. So I’m hoping that if that does happen, I’m 105 years old and it will be okay. But my other hope is that it just doesn’t. And this is maybe a one-time blip in my earlier life than expected.
The challenges of my diagnosis
My biggest challenge has been being able to live with it comfortably. I have had a full head of hair my whole life, and I think it just changed my appearance so much, especially at the beginning when I was missing all my hair. And I had a very noticeable scar that I couldn’t cover. That I had to really become comfortable with that, or who I was. I found myself very often justifying, like I have brain cancer, or just telling that to somebody. My son even said it to people at school. They’re like, You look so different. Felix’s mom, what’s different about you? And he would even say it. She has brain cancer. Leave her alone. So, whether I want this to be a traumatic event for everybody, it kind of is. I think it’s been hard to come to terms with and hard to keep private, as it’s so physically obvious in my appearance. But I’ve gotten a little bit better, and I’m trying to own it now.
I feel like initially, maybe it’s going to take a little bit of time in this drastic change in my life. Is it just being treated a little bit differently? People started treating me differently or acting as if I were more delicate or needed extra padding around me. I’m very much independent, but I’m also going to push myself in every way I can, and I think the bubble around me, or people hoping to give me the ability or to protect me, has become a big change in my life. Improving that has been a little bit challenging as well. Just being like, I can do this. I’m good. I’m. They said I can do my normal activities. I’m not trying to be extreme by any means. I only got one day of snowboarding in last year, and I’m hopeful that that is not the end of it for me. They promise that I can do all that, but it’s a little bit hard to overcome that aspect as well. Just hearing that somebody had brain surgery. Even my mom, when I called her, said, Wow, I can’t believe how well you’re talking. I just assumed you wouldn’t be able to talk if you had your brain operated on, which I can see is a very valid deduction, but I don’t know if it’s something that we know enough about.
My message of hope
We all go through extraordinarily hard times in life, and if we want to live in or ruminate in the negative and live in that, and it can make us sick, we can go under and live in the stress and the the disheartening feeling of being like, I have a brain tumor, I’m going to die, and this is what’s going to kill me, and it’s the end of the world and living in that is so toxic and so bad for you that living within the positive side of things, or feeling positive and optimistic that you can overpower this and that it’s mind over matter everywhere. And I try to be as mindful of that for myself all the time, losing my husband and becoming an only parent, and then finding out I have brain cancer four years later. I cannot let the burdens and the hurdles in my life take over. What is more positive? And seeing the joy on my son’s face and giving him the best experience in life together, and making memories that last.
I would say if I had one piece of advice for anybody, it would be to take care of yourself. Know that if you’re feeling overwhelmed or stressed, or if something’s not right, it’s okay to just go and get a checkup and look. And maybe that stress can be something else. What most often do we hear? Don’t give yourself an ulcer. Don’t get so stressed. You get an ulcer. But in my world, I’m wondering if I got so stressed that I gave myself a brain tumor. I made my existing brain tumor worse. So. Self-care. Taking care of yourself in every way you can. And that would be my best advice. And finding out and being preventative.
Facing Cancer as a Young Mom: Melanie’s Stage 4 Nasal Squamous Cell Carcinoma Story
Despite the excitement of expecting her first child, Melanie faced a life-altering diagnosis at 30 weeks pregnant: nasal squamous cell carcinoma. Her symptoms began subtly, with nosebleeds, sinus pressure, and congestion, all of which she attributed to pregnancy. However, when Melanie’s left eye started to protrude, she sought medical attention. An ENT attempted to examine her nasal cavity but found a mass blocking the scope. Urged to seek emergency care, she underwent an MRI and biopsy, confirming the presence of cancer.
The stage 4 nasal squamous cell carcinoma diagnosis brought overwhelming fear and uncertainty. Melanie worried about being there for her child and the possibility of someone else raising her. She had to make treatment decisions quickly. Because the tumor had grown into critical areas, immediate surgery was not an option. Instead, doctors recommended chemotherapy, which she would begin after giving birth. Melanie’s hopes for a natural birth shifted when complications led to an emergency C-section. The moment her daughter was born brought a mix of relief and profound love. She held her baby for a day before beginning chemotherapy in the hospital.
Chemotherapy provided initial success, shrinking the tumor in her nasal cavity and allowing Melanie to breathe more easily. However, the tumor in her eye orbit remained unchanged due to poor blood flow in that area. With no clear margins for radiation, doctors advised surgical removal of her left eye and surrounding structures before proceeding with further treatment. The first surgery replaced lost tissue using a skin flap from her arm, followed by radiation therapy. Radiation, unexpectedly, was more physically challenging than chemotherapy, leaving her exhausted and struggling to eat. Despite this, she avoided a feeding tube and completed treatment.
Beyond the physical toll, cancer reshaped Melanie’s mental and emotional well-being. The loss of breastfeeding and the shift in parental roles meant that her husband had to take on responsibilities that they hadn’t anticipated. He became the primary caregiver, ensuring she had the rest needed for recovery. Melanie found solace in therapy, initially struggling to connect with traditional therapists who lacked medical experience. A hospital-based therapist and support groups provided better understanding, though finding peers in similar circumstances proved difficult due to her young age.
Motherhood took an unexpected form, but Melanie embraced every moment with gratitude. Nasal squamous cell carcinoma altered her body, but she is focused on regaining strength and adjusting to her new normal. Regular check-ups and hyperbaric oxygen therapy support her ongoing healing. Though life will be different, Melanie remains hopeful, emphasizing that even in the darkest moments, happiness can be found. Her experience underscores the importance of mental health support, a strong community, and finding purpose beyond the diagnosis.
Name: Melanie S.
Diagnosis:
Nasal Squamous Cell Carcinoma
Staging:
Stage 4
Mutation:
p16 positive (HPV-related)
Symptoms:
Nosebleeds
Sinus pressure
Congestion
Eye protrusion
Treatments:
Chemotherapy
Surgeries: orbital exenteration (left eye removal) & reconstructive flap surgery
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.
Symptoms: Sore on the tongue, which caused pain during eating and speaking; changes in the color and texture of the tissue where the sore was located Treatments: Surgery (partial glossectomy, radical neck dissection, reconstruction), radiation ...
Krystal’s Stage 4 IgM kappa Multiple Myeloma Story
Krystal, a 42-year-old mother from Georgia, shares her journey after being diagnosed with Stage 4 IgM kappamultiple myeloma in June 2022. Before her diagnosis, she experienced troubling symptoms like tachycardia, shoulder pain, and shortness of breath, but initially dismissed them as effects of aging, weight gain, and other factors. A critical moment arose when she felt a severe pain in her back, leading to an urgent care visit, where she learned it might be cancer. Her 2 daughters were present during the devastating diagnosis.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Krystal emphasizes the importance of self-advocacy in navigating cancer treatment. Initially overwhelmed, she grew to actively participate in her care, seeking multiple opinions and eventually finding a team that communicated effectively and monitored her condition closely. She initially underwent chemotherapy and a bone marrow transplant, which provided temporary relief. However, persistent relapses led her to pursue CAR T-cell therapy, a promising avenue that has since improved her condition.
The journey has strengthened Krystal’s bond with her daughters, who have been her caretakers and constant support. She highlights the mental health challenges accompanying cancer, advocating for therapy and open communication. Despite the physical and emotional toll, she leans on her faith and resilience to maintain a hopeful outlook.
Community support plays a pivotal role in Krystal’s coping mechanism. Family, friends, colleagues, and online connections have provided essential emotional and practical support, allowing her to manage daily life and medical responsibilities. While acknowledging she is no longer the person she once was, she embraces her new reality and encourages others facing similar challenges to advocate for themselves, accept help, and stay encouraged. Her story is one of perseverance, faith, and the transformative power of love and community.
Name:
Krystal S.
Diagnosis:
IgM kappa multiple myeloma
Staging:
Stage 4
Initial Symptoms:
Back and shoulder pain
Tachycardia
Heart palpitations
Shortness of breath
Loss of appetite
Fatigue
Malaise
Treatments:
Chemotherapy
Bone marrow transplant
CAR T-cell therapy
Thank you to Johnson & Johnson for their support of our patient education program! The Patient Story retains full editorial control over all content.
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
… as hard as myeloma is, you can still come out of it and still rock it.
Introduction
Hi, my name is Krystal. I currently reside in Georgia. I am 42 years old. I was diagnosed with IgM kappa Multiple Myeloma in June 2022.
I am a mother of two beautiful young adult daughters. I am an accountant. I love light hiking, walking on trails, parks, painting, and just spending time with family when I can.
Pre-diagnosis
Before I got diagnosed with multiple myeloma, I was having tachycardia, shoulder pains, heart palpitations, shortness of breath, nausea, loss of appetite, and back pain. My resting heart rate was at 130 beats per minute, which is not normal at all. And these things were not getting better with over-the-counter medicine.
I was also experiencing some weird pop-like sensations. After I felt the first pop, which was on the right side of my chest area, I went to the doctor and they told me that I had probably pulled a muscle. They did do a chest x ray, but that was clear. And after that, the shortness of breath progressively got worse, as well as the heart palpitations.
I went to the doctor again in probably the second week of June 2022, and I got an EKG done. It was normal sinus. And then the next day, I felt another pop, this time on the left side of my chest area. I didn’t go to the doctor because of the diagnosis last time.
About a week after that, I felt and heard a really loud pop in my back and fell to the ground in excruciating pain. Later on that evening, I ended up going to urgent care and they did a bunch of tests and scans. That’s when they told me that it looked like cancer. I was finally diagnosed with multiple myeloma in June 2022.
I just couldn’t put my finger on what was happening to me. I would blame it on things like my age, the fact that I had gained weight, and so on. It was just extremely frustrating because I didn’t have any answers and I couldn’t figure it out. But never in a million years would I have thought it was cancer.
Reaction to the diagnosis
When I heard that, looking back, the first word that comes to mind is devastation. We cried so hard that day. It was just unbelievable. And it really felt surreal — this can’t be happening. There is no way that I have cancer.
My daughters were with me at that time. We were just heartbroken. I think I blanked out at that point, and I don’t really remember anything else until one of the days I was in the hospital.
There was so much I had to learn. I have extensive bone damage, including lesions literally all over my body from the skull, all the way down. So I was confused — how is it a blood cancer? You’re talking about my bones all the time. They did explain it, but there was just a lot going on.
But the doctors really did educate me. And then I was overly consumed with trying to learn about multiple myeloma and read and do my own research.
Finding the best care
I saw a doctor while I was in the hospital, and she is still currently my oncologist. I did also see a multiple myeloma specialist, which is something that other multiple myeloma patients should also consider doing. So I had that team of doctors to support me.
However, that team was not the best. I just feel like the communication wasn’t there, and I really feel like they dropped the ball with me. I also don’t think they were monitoring me as closely as I needed them to.
So now I see another specialist, and this team is awesome. They are really on top of things. I’m getting blood work, bone marrow biopsies, and bone surveys, which are X-rays.
Also, the communication is great. They have different numbers that I can call anytime and I can ask them as many questions as I want. They will call me back. I’m always going to get an answer. If they don’t know something, they’re going to figure it out.
They’re also making sure to monitor me. Right now, it’s not as often as before, when it was as often as every day, even on weekends and holidays.
The importance of self-advocacy
I think self-advocacy is one of the most important things that you can have when you’re dealing with cancer. In the beginning, I was so scared. I didn’t know what was going on. And so I was just going with the flow. But I’ve been in the game for a couple of years now, and so I’m asking all the questions.
You just have to speak up. I mean, let the doctors know how you feel. If you don’t want to do something, let them know and discuss it with them. And maybe there are other options. They should be talking to you about those things.
It’s your body and it’s your life, and you deserve the best. I mean, it is so hard going through this, and you need to have a team that you feel like is for you, and who’s going to support you no matter what.
I’ve talked to my specialist about getting the vaccines again. I’m on the fence about that. And she said, that’s okay. If you don’t want to, you don’t have to. She explained to me, it’s about exposure and you might have to do some lifestyle changes, but if you don’t want to, you don’t have to. And I love that.
Definitely speak up. I know, sometimes it can be intimidating, but you just have to. You’ll get used to it.
I keep going and fighting because I love life and I want to be here.
Treatment plan for IgM kappa multiple myeloma
Chemotherapy
I first started intravenous chemotherapy in August 2022. Initially, I would have to go twice a week for that IV chemo, and each session took about 4 hours or so. I wasn’t doing well in the beginning, so I did pills as well, daily for 21 days and then off for a week.
I didn’t feel really bad. I mean, I was sleepy because I had pre meds. And then after the second treatment, I was starting to feel better. And so then after that, I just got better and better.
However, I ended up relapsing at least 2 or 3 times. And usually when I relapse, I know something’s going on. My body just feels prickly and I get a little achy. And the fatigue gets a lot worse. That’s how I know — oh, something’s happening.
Bone marrow transplant
I had my bone marrow transplant on February 28th, 2023. I would say that the procedure itself is simple; everything before the transplant, as well as the recovery, is all the work.
So beforehand, I got a large dose of chemo and that made me really fatigued. I also experienced nausea, mild vomiting, and diarrhea. And then I got my transplant, which took just 10 minutes and I felt fine immediately afterwards.
After the procedure, you just build up strength. You go through a basement period where you really, really feel bad, where your immune system plummets down to nothing. And then it ramps up.
It took me about 2 weeks before I felt better. And then that’s how long you’re usually in the hospital, or at least it was for me.
But after my bone marrow transplant, I quickly relapsed. The bone marrow transplant ended up lasting me maybe 2 or 3 months at the most. And the old specialist that I had didn’t have a plan, and so my oncologist was trying to figure out what to do next. That’s where I feel they dropped the ball. The myeloma had gotten out of control, and then finally I started another chemo regimen.
And that is when I started seeing the new specialist, and she told me, since the bone marrow transplant did not work for you, you need to do CAR T if you relapse again. And so we had a plan. So when I was in the hospital for that month, it was so I would stabilize in order to get CAR T.
CAR T-cell therapy
Just like with a bone marrow transplant, there’s a lot of stuff that you have to do prior to getting CAR T. There are so many appointments and so many tests. And then finally you get to the CAR T procedure itself.
I had my CAR T procedure on September 3, 2024. It took me maybe only 15 minutes. As an aside, it tasted and smelled like tomatoes to me, and they say it can taste like tomatoes or creamed corn for some people.
After CAR T, my body would feel sore, but other than that I would be feeling fine.
I’m done now with CAR T and I’m feeling good.
It’s not my time to go yet. I am too young.
So I have to fight and get through it.
Her motivation
I keep going and fighting because I love life and I want to be here.
I have 2 beautiful daughters that I want to be here with. It’s not my time to go yet. I am too young. So I have to fight and get through it.
People probably wouldn’t believe me if I were I tell them all the things that have happened. But yeah, I’ve gone through them. I’m a resilient person, and I’m truly blessed. And I’m thankful that I’m here and I’m going to keep fighting.
My daughters are amazing. They have taken care of me throughout this whole time. They literally stopped their lives to take care of me, and I just appreciate them so much. We’ve gotten a lot closer, and we were already close. But, you know, this brings a better bond. Because they are with me every step of the way. And they’re my cheerleaders.
My girls have gone through a lot. It’s [a parent’s IgM kappa Multiple Myeloma diagnosis] mentally draining on them as well. But they handle it well. They rely and lean on each other a lot. We definitely keep the communication going. I’ve had them in therapy. We just keep praying and just try to keep positive.
Her mindset
I haven’t been diagnosed with multiple myeloma that long, I’m going on 3 years. Having relapses as often as I have had is tough, but I have to keep going.
Mental health, I think, is a huge factor. I don’t think it gets discussed enough. I think anybody that has a cancer diagnosis, and maybe their family too, would need to speak with somebody. I will be honest. I haven’t talked to a therapist as much as I would like to, but I have seen one, and it absolutely helps.
I also try not to stay in a negative mindset. I mean, I allow myself to feel all the feelings. They are valid. I’m frustrated, angry, sad, and I do get depressed sometimes. Though I allow myself to be in those feelings, I try not to stay there that long. You have to come up out of it and just get through it. And, really, it’s a day by day thing.
I’m never going to be the same person I was before all this happened. Not ever again.
But it’s okay.
Creating community
Community is so important. You need to have a support system, or you would just be a mess.
I have lots of support from my daughters, my mother, my friends, my family, my coworkers. Without that support system, I don’t know how I would have survived.
People want to help, and there are a lot of good people out there in the world. The little things count so much and are so helpful. I’ve had people bring us groceries or just bring us a meal, come down to visit and clean the house or whatever. That is super helpful.
Coworkers have given me leave donations, and that has been such a blessing, to be able to still pay the bills even though I’ve been in and out of work.
I’ve done online chats and connected with people on Tiktok. That helps. Because just meeting people living with the same thing as you is just really heartening. It really has been almost therapeutic. Because it felt like I found my people.
Her life right now
I’m never going to be the same person I was before all this happened. Not ever again. But it’s okay.
It is hard. You know, you think back sometimes — oh, man, I used to be able to do this or that, or, I used to be so lively — that’s no longer the case. It’s hard and it’s definitely challenging. It takes time to get used to.
But I feel like you’ll be fine once you get to that point where you realize and accept that you’re no longer that person you used to be, but you’re just a different version of that person. I’m still the old Krystal, but I’ve just had to tweak some things.
It did take me a while, though, you know? And even now, I’m kind of hard on myself, so just giving myself grace, learning how to do that.
My biggest piece of advice is to stay encouraged.
What Krystal wants to share
I always feel like multiple myeloma has taken literally everything from me.
It’s taken my vision. At one point, I couldn’t walk. I was using a wheelchair. I was in excruciating pain. I’ve had strokes. I’ve had everything. But I’ve come out of it like nothing ever happened.
Hope is a good word. Yes, I hope for the best. And I think I go more towards faith. My faith has gotten stronger during all of this. And that is really what I hold on to.
My biggest piece of advice is to stay encouraged. It is going to be so rough at times. You’re going to feel waves of emotions. It will be like a rollercoaster. But just stay encouraged. Speak up and ask all the questions. Be your own advocate. Accept help. You’re going to need that support from others, and you will be surprised at how many people really want to help you and will support you throughout all of this.
So as hard as IgM kappa multiple myeloma is, you can still come out of it and still rock it.
Special thanks again to Johnson & Johnson for their support of our patient education program! The Patient Story retains full editorial control over all content.
